Shining the light on activism

Jay Ruderman (00:05):July 26, 2020 marks the 30th anniversary of the Americans with Disabilities Act. What many people may not know is that the groundwork for the historic legislation began many years earlier.Speaker 2 (00:24):All Inclusive, a podcast on inclusion, innovation and social justice with Jay Ruderman.Jay Ruderman (00:35):Hi, I’m Jay Ruderman and this is all inclusive. My guest today is Judy Heumann, a pioneer and leading activist who helped begin the journey to the legislation many years earlier. Judy, thanks for joining us today. We are living now in the midst of the COVID-19 pandemic, which we’ve been isolated for several months, and there have been protests that have broken out across the United States and around the world as reaction to the murder of George Floyd. You have a lot of experience with protests and demonstrations, what are your thoughts about what’s happening in our world today?Judy Heumann (01:12):So, first of all, Jay, thanks so much for asking me to be on your show. And it’s a very complicated question because there’s so many things that are happening simultaneously. There are many ways to look at what’s happening. One of which the atrocity that was committed against George Floyd in broad daylight with obviously no sense of wrongdoing from any of the police officers, I think really clearly shows the disregard that some people have towards the lives of black men and others. And that I think really has shaken myself and millions of people in the United States and around the world to see this.Judy Heumann (01:53):And I think one of the important parts of what is happening as result is, for those of us who may not experience the stories that I’ve heard from many black men over the years, and from one of our rabbis, actually, who came from LA and moved to Florida. And when he was in his early 20s, there was an altercation where he was picked up by a police officer and brought home to his family. And he said in synagogue, “If I was black, I would not have been brought home to my family. I would have been arrested.”Jay Ruderman (02:31):I’d like you to talk a little bit about what it was like growing up. I read what you wrote about your parents and being immigrants from Germany and their families being victims of the Holocaust. And what it would be like as a young disabled person in Germany, and the fact that people with disabilities were among the first victims of the Nazis and extermination and how that impacted you as a child. Also someone that had polio, how your parents reacted, how your neighborhood reacted, your friends, what was your childhood like?Judy Heumann (03:03):So, I mean, I had a great childhood, I always felt accepted and loved by my parents. And in the neighborhood that we lived in, I grew up in Brooklyn. And so we lived in an area where there were no apartment buildings on our block or on a number of other blocks. So it was middle class, not upper middle class, middle, middle, middle, lower class. And we had an author, a police man, a teacher, a firefighter, a very kind of typical community. And because my parents moved in there when I was three months old and it was a neighborhood of a lot of young families who had children a little older than me, the same age, younger, it was a pretty tight knit community.Judy Heumann (03:47):My brother was born, and I was in the hospital because I had polio in 1949, August, my brother was born in September 1949 and the neighbors really helped out a lot. So I think as I mentioned in the book, I knew that I was different. I used a wheelchair, the steps really adversely affected me, the synagogue that we went to was a building that had lots of steps. The synagogue itself was up two flights of steps and where we studied on Sundays was also up two flights of steps. And my father would carry me up and down the steps. My uncle lived in a house, all of our relatives lived in places that were not accessible. And my uncle lived in a place where there was one very steep flight of steps, and my dad would carry me up and down. I was in Brownies, it was in the church up the block. My mother pulled my wheelchair up and down the steps. The Jewish program that I went to when I started studying, also had steps.Judy Heumann (04:48):So steps were everywhere. And my father was very interesting, Jay, because when I had polio, they had just bought this house. And I guess when I was like, I don’t know, five or six years old, they built a ramp and they built an extension to the house, so that I’d be able, when I got too big for my mother to carry me up and down the stairs because my father had a butcher store and he left for work between 3:30 and 5:00 in the morning, so I could start sleeping downstairs. So they were pretty observant to looking ahead at what that needed to happen. And that was all very important. I think, as you mentioned earlier, I was denied the right to go to school when I was five because the principal deemed me a fire hazard, even though my mother would have walked me to and from school and pulled me up and down the steps of the school and helped me go to the bathroom and everything.Judy Heumann (05:39):At that point, they didn’t know any other families that had disabled kids. And my mom came over when she was 12, she was an only child, her parents died in the camps. My father had a couple of brothers, they all made it all over, but his parents also died in the concentration camps. And so they were just trying to move ahead, creating their life. They weren’t looking at becoming advocates. They weren’t not looking at it, it was just not… They got married, they wanted to have children. My father and my uncles started a store and everybody was busy with moving the family forward. So they really had to make some important adjustment, really, which I think was my mother’s inquisitiveness and my mother’s ability to kind of dig more deeply into trying to get me into school.Judy Heumann (06:26):We had a couple of incidents, there was a Jewish day school that my mother tried to get me into for the first grade. And the principal of the school said, I didn’t know enough Hebrew. So the physical therapist that I had, his wife was from Israel. So my mother took me over to their place a number of times a week to learn Hebrew. And she called the principal of this school, in August and said that she was sure I knew enough Hebrew to begin to go to the school, but the principal never intended on my coming to this school. I think he just thought that he would say, I couldn’t speak enough Hebrew, and my mother and father would do nothing about it. We began to see, even when you do did things that people said, “If you do this, we’ll do that.” But that wasn’t true that we’re beginning to get a better understanding that if one had a disability, the world was not like for Franklin Roosevelt, and that they needed to be able to continue to become advocates.Judy Heumann (07:25):When I finally was able to get into a program, which was called Health Conservation 21, the kids in the classes, the regular school building went up to the sixth grade, but the special ed classes, like in my class, there were kids who are 18, 19 years old, they’d stay till they’re 21. And then they would go to sheltered workshops. There were no kids that had gone to high school who were from our program. And my mom and other mothers worked with the board of Ed in New York to get them to open up some high schools. So, they were doing all kinds of things, not just my mother, but other mothers, really learning the role of advocacy and not accepting no.Judy Heumann (08:07):I remember my mom telling me this story of, so she used to do volunteer work for the March of Dimes, because remember the vaccine didn’t come out until ’55. And when she, and these other mothers were working on trying to get the board of Ed to make some high schools accessible. She went to the March of Dimes and asked for their support and they told her they didn’t get involved in political things. So my mother stopped collecting money in the neighborhood.Judy Heumann (08:33):And I have to say it wasn’t just work that she did with me as I had moved out of the neighborhood, gone to California. She was very active in the neighborhood association, working against the banks that were red zoning the neighborhoods so that whites would move out and blacks would come in. They were trying not to allow people to buy homes in the neighborhood, but do rentals and so she was very involved in helping that not occur in the area that we lived. So, I mean, I really learned a lot from my parents and learned that there’s a time when we have to take on our own lives and then our own responsibility.Jay Ruderman (09:14):Your parents sound like they were extraordinary people-Judy Heumann (09:17):In a very ordinary way.Jay Ruderman (09:18):Right, but it came very naturally to them, that when they were, I believe you wrote about a doctor suggesting that you be institutionalized and they just could not have imagined that possibility. However, at that time, I’m sure a lot of children with disabilities were institutionalized.Judy Heumann (09:36):Yeah, they didn’t tell me. I was 35 or 36 before I heard about it, I never knew that. My father told me I was visiting, and I said, “I told him he was wrong.” I was running up the steps, calling my mother, “Ilsa, Ilsa, isn’t this true?” And she said, “Yes.” And that was the end of the entire discussion. The Holocaust played an important role in our life, on some level, the synagogue that we went to was all German Jewish, many of them had lost family members. And it was started by one of my great uncles and some other people, and so that was always a part of our upbringing. Even though on some level people didn’t discuss it a lot, it was always something that was there. And very important, I think it did in its own right inspire my parents who really want to ensure that we were, I in particular, was not adversely affected by having a disability.Jay Ruderman (10:36):Recently, you’ve published your memoir called, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, and it’s received really great reviews. Maybe you can talk a little bit about what, at this point in your life led you to write it, and what was the experience like of writing it?Judy Heumann (10:54):What led me to write it was lots of people telling me for many years that I should write a book. And my thing, I was never going to be able to write a book by myself. And it was just fortuitous that someone who was a friend of mine and had a disability, knew a company that was interested in working with me on trying to get this book written. And so we were able to get an agent and I found a writer, Kristen Joiner. And that has been a very important experience in my life. Working with someone else who doesn’t know you, for me was difficult. And it really made me have to be more forthright, and I don’t like being… I’m happy being critical about certain things, but when it comes to me, I tend not to be my own strongest advocate in certain ways.Judy Heumann (11:46):And so the experience was important for me because Kristin is a really good writer, but she didn’t know my story. And it was really important for me, for this story not only to be literally accurate, but it needed to have a certain tone that had to be my tone. And so she is a writer, and one of the things that we would frequently engage with is she would write something, I would be working on it and trying to explain how this wasn’t really my voice yet. And working on getting the language, the rhythm of the writing to be one, which I felt was representative of me.Judy Heumann (12:29):And when she started, she was… When we started working together, she was in California, working in DC, traveling back and forth. And then she left this job and she moved to New Zealand. So that in and of itself was a big challenge because New Zealand is the next day and their night and our day are different. But we made it work and we each worked huge amount of hours on the book, and I feel happy about it.Speaker 2 (13:02):You’re listening to All Inclusive with Jay Ruderman, you can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive.Jay Ruderman (13:13):Please remember to subscribe, rate and review us wherever you are listening.Jay Ruderman (13:19):Joseph Califano, who was the United States Secretary of Health, Education and Welfare under President Carter refused to sign meaningful regulations for section 504 of the Rehabilitation Act of 1973. In response, you helped organize the 504 sit-in in 1977, the lasted 28 days in San Francisco. What do you remember about that time?Judy Heumann (13:44):There’s an organization that had been started in 1975 called The American Coalition of Citizens with Disabilities. And one of the reasons why ACCB was started was because of the 504 regulations, because we were concerned that the process that was going on in developing the regulations needed to be followed through, and we needed to make sure that we were going to be able to get the regulations signed in a way that was meaningful. And so when Gerald Ford left office, he refused to sign the draft regulations. And when Carter was running for office, he said that he would sign the regulations, or he would have them signed.Judy Heumann (14:26):And then when he came into office and Joe Califano came in, we ACCD and the member organizations were becoming very concerned because we were hearing from staff who worked within the department that although the secretary was saying they were going to do a review, which they had a right to do, because you were switching from the Republicans to the Democrats, we were afraid based on his background of being a lobbyist for universities and healthcare facilities that he was going to try to change the Act. And we were also hearing internally about a growing list of issues that he was looking at considering to make changes. So the demonstration in San Francisco was in some way, similar to what happened to the demonstrations of in Manhattan.Judy Heumann (15:13):By that, when I sat through the demonstrations in Manhattan, we did not have a plan that we were going to sit on Madison Avenue. When we went for the demonstrations in San Francisco at the Health, Education and Welfare building, we had intended by and large to have a big rally outside. We had talked to the staff of the regional secretary and said we wanted to have a meeting with him. And we had a planning committee that worked with his office because we were going to have people from the rally outside, come into the building, and all of that had been set up.Judy Heumann (15:47):So when a group of us went into the building, into his office, Joe Maldonado, I mean, I fully expected that he was going to have been briefed. I had worked in Washington DC for a year and a half with a senior senator of the Labor and Public Welfare Committee. And I knew that he never went anywhere without getting a briefing. And so I was just following that model, he wouldn’t have. I couldn’t believe that you would have a regional director in the largest federal region in the country, going into a meeting where they knew that they were going to be discussing the 504 regulations being unprepared, but the man was totally and completely unprepared. He didn’t know what 504 was, you can see in the film and in the book that I asked him to bring his staff in, because I assumed, “Okay, maybe they wrote him a briefing memo and he didn’t read the briefing memo.”Judy Heumann (16:37):I mean, I had all these thoughts going through my mind really based on my experiences working in Washington, and his staff came in, nobody knew anything about what was going on in Washington. And they kept deflecting to, “This is being handled by so and so in Washington.” And I think that really made those of us in the room decide we couldn’t leave that building. A couple of us a day or two before had started talking about, “Well, what if we wanted to stay in the building? What if we needed to stay in the building?” But I think only a couple of us came in… Like I came in with the toothbrush and an extra pair of underpants. And that’s how I was ready to stay. And a couple of other people had brought toothbrushes in but really seriously, we weren’t looking at it.Judy Heumann (17:21):When Joe Maldonado didn’t know what 504 was, when his staff didn’t know what was going on, and we knew that the Bay area was the most well organized. Ed Roberts was the director of the Department of Rehabilitation, he had used some of their rehab money to help set up CILs. There were 10 CIS in California-Jay Ruderman (17:39):Which is, centers for independent living?Judy Heumann (17:43):Centers for independent living. But not the Berkeley Center, but the other centers that were started in California, numbers of them were started with rehabilitation dollars before the Rehab Act was amended in ’78 to set up 10 national centers for independent living. So California had more CILs, we’d been more involved with labor unions, more involved with other progressive groups. So we felt that, well, because for the rallies, we had been working with quite a number of organizations before the actual day that we went into the federal building.Judy Heumann (18:17):So you could see the rally that we had, the day that we moved into the building, we had letters of support from Cesar Chavez. We had support from many of the leaders, not just the disability leaders. That was another very important thing, and because the disability community was active, we were also known by the mayors of San Francisco. So Mayor Moscone, who was unfortunately was later killed, as was council member Milk, but he was very supportive.Judy Heumann (18:49):And was in Sacramento, and so we were able to get… The Secretary of the Department of Health sent down mattresses to the building so that people wouldn’t have to sleep on the floor. We were well organized and we decided that we were not going to leave because all the other demonstrations that had taken place in the other eight regions and one or two other cities, people were beginning to have to leave, within a day or two, and we were the one group that was able to hold out.Jay Ruderman (19:17):So just to back up a little bit, 504, which was a precursor to the ADA, why was that so important? By him not signing that, was that like him saying, “I’m not recognizing the rights of people with disabilities.”Judy Heumann (19:32):By him saying, what Secretary Califano was saying that he was going to review major provisions in the proposed regulations, meant that we really had to be concerned that whether the intent of nondiscrimination against disabled people in programs receiving money from the federal government was going to be worth any. And there’ve been years of discussions where staff at HEW had been traveling around the country, getting a better understanding of both the type of discrimination that people were facing. And looking at, coming up with proposals that would meet the intent of addressing discrimination against disabled individuals. But, like with the ADA, could not come out saying that all buildings that were built with federal money were going to have to be retrofitted.Judy Heumann (20:22):Because remember the issue with 504 regulations, unlike the ADA, the 504… Sorry, the 504 statute, unlike the ADA statute, the 504 statute was like 42 words. You couldn’t discriminate against one based on disability if you were a recipient of federal financial assistance. It didn’t define disability, it didn’t define discrimination, it didn’t define remedy, It didn’t do anything. And so really what John Modache, who was one of the leaders from the government side of developing these regulations, had to do is really begin to get a better understanding of who was the population that was being discussed, what was discrimination and what remedies could be required, both to prevent discrimination in the future, i.e. building a new building with government money would have to be accessible or renovating a building with government money would have to be accessible. If we would have in any way caved in and not really held our ground, the regulations would have been much weaker than they are now. And I think we felt that with the proposed regulations that did get signed, that we could live with those regulations.Jay Ruderman (21:32):Comedy Central has a show called Drunk History, and they did an episode on the 504 sit in and Tony award winning actress, Ali Stroker played you, have you seen it? What was your feeling about seeing yourself made into a cartoon and played in this show?Judy Heumann (21:47):Well, I love the piece and I had to step back after I saw it just to say, this inaccuracy here and that inaccuracy there really didn’t matter because what was important, I think about Drunk History, 504, is that it showed on the Drunk History program. And so the day that it showed when they have their episodes, they have three episodes. And so the particular day that it showed, it was an episode about a woman who was a suffragette and an episode about the Selma walkout from high school, where a couple of black, young teenagers walked out of the schools because of the terrible education they were receiving, and then there was the issue of the 504 demonstrations.Judy Heumann (22:30):And people watched it, I remember my niece calling me who, I had no idea, she regularly watched Drunk History, I think a hundred thousand people saw Drunk History that night. And so a hundred thousand people got to learn about a piece of history that they knew nothing about. So I think it was amazing. And I think, Candace Cable, who was the one whose sister worked in a costume at Drunk History, she was the one who was able to persuade the program to do a piece. And she helped them select the piece that they were going to do. I actually didn’t meet Ali until the night after the Drunk History piece showed, and we’ve been friends ever since. And she actually is the person who read my book, so she’s done the audio.Jay Ruderman (23:17):Interesting. You were named one of Time Magazine’s 100 Women for the Century. How did that make you feel?Judy Heumann (23:24):I knew nothing about it. It was very funny. I was going on at Trevor Noah’s show on March 4th and I was in New York and I was taking some time out to kind of get my mind in order to be able to do the show. And I was looking over emails and there was an email that said, “Tomorrow, you’re going to be one of a hundred women in Time Magazine.” I knew nothing at all about it. They sent me the piece so I could read it, but you couldn’t give any comments. And I was very honored by it. I mean, how could it be anything else? I don’t know who nominated me. I don’t know how it happened. And I think for me, they picked 1977 because of the 504 demonstration. And my name, I think represents the thousands, millions of other disabled people who have done and will continue to do so much work to continue to fight for our right.Jay Ruderman (24:18):Well Judy, you’re very humble. You are one of the foremost leaders of the disability movement and you’ve personally, in conjunction with other colleagues and other groups but you’ve really changed the landscape for people with disabilities in the United States and around the world. So I urge everyone listening to this show to pick up a copy of, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judy Heumann. It’s a fabulous book about the disability rights movement and your history. And I thank you for writing it, and I thank you for, for joining us on this show. It’s been a pleasure.Judy Heumann (24:54):Thank you very much, it’s a privilege to be with you.Jay Ruderman (24:56):Thank you, and be well.Speaker 2 (25:02):All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast, be sure to tweet @JayRuderman.

Jay Ruderman (00:00):The COVID-19 pandemic has put a spotlight on our frontline healthcare workers. Many of them have worked hard to take care of people close to you and me. One of the renowned hospitals leading the charge against the pandemic, is Massachusetts General Hospital in Boston.Speaker 2 (00:28):All Inclusive, a podcast on inclusion, innovation and social justice, with Jay Ruderman.Jay Ruderman (00:39):Hi, I’m Jay Ruderman and this is All Inclusive. Today, we have the President of Mass General, Dr. Peter Slavin joining us. Dr. Slavin, thanks for joining us on All Inclusive. I want to begin by thanking you and the first responders who worked hard during this past year and continue to do so during the pandemic, and for your dedication and advising leadership from all over the world on the best ways to tackle this terrible illness. Tell us how has MGH reacted initially to the pandemic? And are there any procedures that you will continue to implement, especially with the potential for a second wave?Peter Slavin (01:19):Well, thanks Jay. It’s a pleasure to have a chance to talk with you. I could go on for a long time about the different ways in which we responded to this unprecedented situation, but I guess I’ll focus on three. One is the care itself. I mean, we had to turn the hospital inside out and upside down, to respond to the demands that we saw beginning in March that peaked in April. At our peak, we had 450 COVID positive patients in the hospital, that represents about half of our hospital beds. We normally have one medical intensive care unit for medically ill people. At that point, we had 12 intensive care units requiring us to redeploy staff, both doctors and nurses from around the hospital. And we normally have about 40 patients in the hospital on ventilators. I think at our peak, we had about 150. So the effort involved in just responding to that initial surge, was amazing.Peter Slavin (02:14):On the outpatient side, our outpatient activity fell by about 50%, but almost 85% of it was now being delivered via telemedicine, something that we did very infrequently in the past. Less than 1% of our outpatient care was telemedicine prior to February or March. It went up to 85% and continues to run at about half of our overall outpatient activities. So that’s one area.Peter Slavin (02:38):Second area that I would just focus on, is the research effort. We have the largest research program of any hospital in the country. And both the fundamental as well as the clinical research effort that we launched, has been remarkable to see. We’re involved in multiple trials and possible therapies for COVID-19. We were involved in the one that showed that Remdesivir was somewhat effective in shortening that illness. And we have two vaccine candidates that are in the works in various stages of development. So the research has been very exciting.Peter Slavin (03:10):And then the third area I’d comment on, is just the incredibly dramatic connection that we’ve seen between what’s happening in the hospital and what’s happening in the community. At baseline, about 10 to 15% of our inpatients at Mass General, are our Spanish speaking people. And we noticed pretty early on, that when it came to our COVID-19 patients, almost half of them were Spanish speaking, which made it very clear that they were coming from Revere, Chelsea and East Boston. And so we unleashed a major community health effort in partnership with the leaders of those communities to try to stem the illness, mitigate the disease as quickly as possible. And so it was a real demonstration of the power of the social determinants of health to result in this virus, so disproportionately affecting disadvantaged communities like those.Jay Ruderman (03:59):So I wanted to maybe delve into a couple of those issues a little bit more deeply. Probably what most people want to know, is how far away are we from a vaccine? And I’m sure there are institutions all over the world that are working on vaccines. How much coordination is there between hospitals and private enterprise in trying to find a vaccine?Peter Slavin (04:21):I believe there are over 100 vaccine candidates at various stages of testing around the world. As I said, we were involved actively in two of them. I think the more the merrier, because coming up with an effective vaccine is part science and part luck. As using a sports analogy, the more shots on goals we take with vaccines, the more likely it is that we’re going to develop or more that are safe and effective.Peter Slavin (04:46):And in addition to just coming up with a vaccine, there’s no company, no organization that can individually produce all the vaccine necessary to vaccinate everyone around the world. And so we’re going to need multiple candidates and multiple manufacturing facilities to be able to meet the demand. So I’m hopeful. If we get lucky, we could have a vaccine that’s shown to be safe and effective by the end of this year, it may be in production or early next year, but I think we’re going to have to get lucky for that to happen.Jay Ruderman (05:17):And if we do get lucky, the production of that vaccine will take some time. It won’t happen overnight.Peter Slavin (05:23):It won’t happen overnight, but because of the unprecedented investments that are being made, it’ll have to happen a lot sooner than usual. For example, in the case of one of our vaccine candidates, that’s actually the work of a investigator who’s based at the Beth Israel Deaconess, but that vaccine has been picked up by Johnson & Johnson and the federal government. While the clinical trials are ongoing, related to this vaccine, the production facility is already being built and fitted out. And so the federal government and J & J are investing a huge amount of money, so that if indeed the clinical trials are favorable, they can swing into production almost immediately.Jay Ruderman (05:57):Another issue that you talked about is telemedicine, which I myself have been involved with, with my doctor and it’s been very successful. Is that the future of medicine?Peter Slavin (06:08):In terms of telemedicine, I don’t think it will completely replace a medical care as we know it, but I think it can replace a fair amount on the outpatient side. I mean, you can’t really do an adequate physical exam by telemedicine. You can’t do procedures on people by telemedicine. You can’t do fancy radiology images like MRIs by telemedicine. But there’s a lot of visits that can be done remotely. I mean, there are a lot of, for example, cancer patients who see their oncologist on a regular basis, basically go over the results of the scans that have been done. Scans will still have to be done in person, but there’s no reason why that visit couldn’t potentially be done remotely.Jay Ruderman (06:47):You talked about minority populations being overly affected by COVID-19 and the amount of Spanish speaking patients in the hospital. I know you’ve talked about this in the past, but do you know why that is the case?Peter Slavin (07:00):I mean, I think it all comes down to the, historically have referred to as the social determinants of health. People in those communities have more crowded housing conditions, which makes it more likely that the disease is going to be spread if one person gets it. People in those communities are essential workers, and therefore have to go to work, and so that puts them at higher risk.Peter Slavin (07:23):I think there was a study that was published in the New York Times about two months ago, which compared using cell phone GPS technology movement of people in affluent communities in this country, as opposed to a lower income communities. And it was quite clear that in the affluent communities, people were basically sheltering at home, and in the lower income communities, they were going to work and leaving the house much more frequently. So I think that put people at risk.Jay Ruderman (07:50):Can you talk a little bit about the financial impact on Mass General Hospital, which I’m sure is taking place at hospitals all over the country, people putting off elective surgeries and other procedures, that would bring income into the hospitals. What’s been the financial impact on hospital?Peter Slavin (08:08):Yeah. Just to clarify, we instituted a salary freeze, so we’re not increasing people’s salaries for the time being, except for people whose incomes are less than $55,000 a year. This pandemic has had a very significant impact on our finances for several months. Our outpatient activity was about half of what it normally is. That took a big toll on our revenue where during that same period of time where expenses didn’t really change much at all.Peter Slavin (08:36):And on the inpatient side, we also saw a temporary downturn, but that sort of bounced back more quickly. And we obviously had lots of very sick COVID patients in the hospital. We have received some support from the federal government. And so that has helped us offset some of the losses, but we’re still lost significantly as a result of this pandemic.Jay Ruderman (08:56):I want to talk a little bit about the mental health of first responders, doctors, and nurses, other people working at the hospital and coming to the hospital as first responders. We, our foundation was proud to partner with MGH, to support the hospital and healthcare workers, regarding mental health. Can you talk a little bit about the programs that are being offered to frontline hospital workers, and how they’re dealing with issues of mental health?Peter Slavin (09:25):I mean, I think the psychology of this for the staff has been complicated. I think on the one hand, our staff have the privilege of caring for people and being involved in our society’s biggest challenge in our lifetime. Our staff is very used to caring for complicated sick patients, and so I think that played to their strength as well.Peter Slavin (09:44):But I think the sheer magnitude of it was overwhelming. The suffering that people witnessed was overwhelming. Having to care for patients without their loved ones around, I think was very difficult, not only on the patients and their loved ones, but the staff themselves.Peter Slavin (09:58):And finally, the fear associated with caring for these patients, not knowing if you were going to get sick, not knowing if you were going to bring the disease home to your family. I think the combination of emotions, feelings is complicated. And so it definitely took a toll.Peter Slavin (10:13):I mean, we’ve bent over backwards to try to support our staff during this period of time. I mean, we have a very active employee assistance program that has made itself available to our entire staff. And some of the units that were caring for lots of COVID patients, we had these regular sessions where people could talk about the experience that they were going through and I think they found those comforting.Peter Slavin (10:34):We also were overwhelmed with support coming from outside the organization, which I think our staff greatly appreciated. I don’t think there was ever any period in the history of our hospital, where our staff was better fed than they were during the last few months. We just had countless donations and meals. I mean, it was pretty overwhelming to see the amount of external support, and I think our staff really appreciated this.Peter Slavin (10:56):I don’t think we’re really going to know the full toll that this has taken for months or years. In some ways I think it may be similar to what we’ve seen with soldiers returning or veterans returning from Iraq and Afghanistan; suffering from the invisible wounds of war. I think there will be some people who are permanently scarred by this; what they’ve been through over the last few months.Peter Slavin (11:19):And we have this program in collaboration with the Red Sox called the Home Base Program for veterans suffering from post traumatic stress. And we’re in active discussions with that program about whether they could potentially broaden their services to make themselves available to healthcare workers as well.Speaker 2 (11:39):You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at Rudermanfoundation.org/all-inclusive.Jay Ruderman (11:51):Please remember to subscribe, rate and review us wherever you are listening.Jay Ruderman (11:57):As a society, what have we learned and what has the government learned from this pandemic, in the event that there’s a spike that there’s a second wave or a different pandemic presents itself and we have to go through this all over again?Peter Slavin (12:10):I hope our government is educable, obviously the response around the country has been highly variable and uneven quality. I’m particularly pleased with what’s happened here in Massachusetts. I think the Baker administration has done a very good job working with the health care community, working with people throughout the state to try to balance dealing with this pandemic, with trying to sustain our economy in some way, and I think understand that you can’t really sustain the economy without first and foremost controlling the virus. So if we’re proud of the fact that at least at the moment, Massachusetts has the lowest rate of transmission in the country. The number of cases that we’re seeing on a daily basis is quite small.Peter Slavin (12:52):I think one thing that we’ve learned is that previously in healthcare, we were focused on just-in-time inventories of supplies; that was all supplies, drugs, personal protective equipment, et cetera. And I think that approach to inventory management didn’t serve as well during this academic. So I think individual providers are going to have created more inventory for needed supplies. I hope the state government has done the same, and I hope the federal government has done the same as well.Peter Slavin (13:20):So if indeed there’s another surge, and we’re certainly seeing it in substantial parts of the rest of our country, hopefully we’ll be ready from an equipment standpoint than before. And we certainly know how to dial up our capacity if needed.Jay Ruderman (13:35):So other states that we see the COVID pandemic surging right now, like Florida, Arizona, Texas, what can they learn from Massachusetts, that Massachusetts has sort of gotten over the first surge and the numbers have calmed down?Peter Slavin (13:50):It’s not really very complicated. I don’t think you can really reopen society and until the transmission rate is at a very manageable level. To do otherwise is just playing with fire. And I think unfortunately, that fire is at the moment, out of control in certain parts of our country, and I certainly hope they can get it back under control.Peter Slavin (14:10):But when you see, I believe it was in, I don’t remember if it was Florida or Texas, that 20 or 30% of the tests that are being done are positive for COVID-19. In Massachusets, that number’s about 1 or 2%. So it’s quite clear that some of the states in this country just reopened the economy, allowed people to mingle with one another far before they should have. To the extent that there are rules in those states about social distancing and wearing masks. There are too many people who aren’t paying attention to that and violating those rules; putting themselves and others at some degree of peril.Jay Ruderman (14:47):It’s unfortunate that it seems to be a common way to deal healthcare by asking people to wear masks has, in some ways become somewhat political, which is unfortunate. I hope that people will realize that they can save lives, their own or others by wearing a mask.Jay Ruderman (15:03):But we’re an open country. People travel from place to place. People are still able to travel either by airplane or in a car. What happens if people from other states where the virus is surging, come here?Peter Slavin (15:18):I think it’s potentially trouble. And we own the hospitals on Martha’s Vineyard, Nantucket. They, about a month ago, more or less had no cases on those islands. And now there are a couple of new cases appearing almost every day from other states; people who weren’t aware that they had the disease, but developed symptoms and are positive. So I think we’re seeing before our eyes that this disease will be introduced to a greater degree into our state, by interstate travel. I just hope those other states will really clamp down hard on social distancing and mask wearing, and not only for their own sake, but for the sake of places like this as well.Jay Ruderman (15:59):Every state is different, the governance is different. I particularly noticed that in Israel, with a similar size population, they’ve been able to keep their deaths down to under 400. Whereas in Massachusetts, we’ve reached over 8,000. Any idea why that happened here in a state that took it very seriously and had very strong leadership in addressing this?Peter Slavin (16:22):I haven’t seen any good comparative data between us and Israel. I would point out that probably more than half of those deaths occurred in people living in nursing homes. And I’m not meaning to trivialize those deaths in any way, but I believe here in Massachusetts, 95% of the deaths occurred in people 70 or older; only 5% of people 69 or are younger. So this is clearly a disease that disproportionally affects older and sicker folks, and particularly those in nursing homes where this can spread like wildfire. But I don’t know enough about what we did compared to what Israel did, to know what resulted in the difference in the outcomes.Jay Ruderman (17:03):They swiftly locked down all foreign travel and sort of isolated the country very quickly.Peter Slavin (17:09):And I think one of the reasons that Massachusetts, New York, became hotspots early on, is because of the amount of travel from Europe, from Asia that comes here, which in most times, most cases is a good thing, but certainly may have hurt us this past spring.Jay Ruderman (17:24):So we released a white paper with a bioethicist out of University of Pennsylvania, Dominic Sisti, that looked at the allocation of resources during a pandemic with regard to people with disabilities, as well as others with underlying illnesses. It’s my understanding that MGH never ran out of ventilators, but did the hospital leadership discuss what was going to happen and who was going to decide who would one and what criteria would be followed if there was a limited number of ventilators, and more patients that needed them than you had?Peter Slavin (17:58):Yes, we did have an active debate about that issue. We had it not only at the hospital, but at the health system, as well as at the state level. And I mean, I found it to be one of the most interesting and challenging debates that occurred during this pandemic. Fortunately, we never had to implement what are referred to as these crisis standards of care, but we did make significant progress in developing them.Peter Slavin (18:20):I guess, at one extreme, you could think the ventilators should be allocated based on who needed it first, and just do it by the order in which patients come in. I guess another approach would be to make some judgment about how likely it was that people were going to survive this illness and what their quality and length of life was likely to be once the illness was over.Peter Slavin (18:44):And I, at least personally, was initially very attracted to the latter approach. It seemed like that would be the most utilitarian way to allocate the ventilators. But you realize as you head down that path, that since certain people in our society with comorbidities, which tend to be more prevalent in minority communities, that you can quickly find yourself in a situation where you could potentially be allocating these resources in a way that was racist or discriminating to certain groups.Peter Slavin (19:15):So it’s a very challenging issue. I think at the state level, after some initial approaches that were more along the lines of the latter approach, I think the state’s sort of backed up a notch or two, and tried to, again, put in place criteria that would allocate these resources to people who would benefit from them. But at the same time, try to avoid discriminating by any categories that would be objectionable, based on disability, based on race, based on age, based on ethnicity, et cetera. But it is a very challenging and obviously critically important issue. And I hope we never have to implement these crisis standards of care during my lifetime.Jay Ruderman (19:59):But again, these crisis standards are being developed state by state. There’s no federal guidelines as to how to handle these types of situations.Peter Slavin (20:08):That is correct. There were guidelines that were issued by the state of Massachusetts, but there were guidelines to hospitals and providers. And we had some experts in this field that were very actively involved in the development of those guidelines, but I think we all breathed a sigh of relief when the numbers started heading in the right direction and we never were forced to implement them.Jay Ruderman (20:33):My sense is that the public really wants desperately to get things back to normal. Do you think there’s a point when you would feel comfortable not wearing a mask, not social distancing at a big event, where people would be able to go back restaurants, bars, and concerts and ball games; sort of like being over it. Are we ever going to reach the other side, or is our life permanently going to be changed?Peter Slavin (20:57):Well, I don’t think it will be permanently changed, but I think it’s going to be changed in all likelihood, until we have a vaccine that is where vaccines that are widely distributed and through a vaccine, we’ve achieved a herd immunity. And until that time, unless you know you’ve been exposed to the disease and have protective antibodies, I wouldn’t advise the kind of activity that you’re describing.Peter Slavin (21:20):So, I think we are in a holding pattern. I mean, clearly now that we have serology testing, some people do know that they’ve been exposed. We’re not sure yet whether that be exposure confers immunity. So it’s probably wisest for everyone to be careful until they’re certain that either an individual or a population basis were protected.Peter Slavin (21:42):This is a very nasty virus; 10 or 20 times more lethal than an influenza. Although most of the deaths occur in older folks, certainly not all of them. And if you look at how frequently people get hospitalized, and I think at our hospital and around the country, about 40% of the hospital beds utilized by patients with COVID-19 were among people younger than 60. So young people can get very sick, they tend to survive, but they’re in for a pretty serious illness in some cases.Jay Ruderman (22:15):When we had the last major pandemic, I mean, there’s been several, but the big one in 1918. I’m not sure, I don’t know if you know that if there was a vaccine that was produced at that time, but it seemed like after a period of time, after several waves and many deaths, that it went away. Is there something about a virus that sort of runs its course?Peter Slavin (22:42):I believe that that happened before vaccines were available, so it did have to run its course, and obviously there were no viral therapies available back in the early 20th century. Viruses and infections in general, do tend to Peter out when about 60, 70% of the population has been infected and is immune. It’s just, it’s harder for the virus to find somebody at that point that is uninfected.Peter Slavin (23:07):In epidemiology, there’s this transmission rate factor of R. And if R is greater than one, the virus or the infection will grow exponentially. If it’s less than one, it will decay and eventually disappear. Here in Massachusetts, we’re just right at about one. In other states, they’re significantly over it, and we’re seeing exponential growth of the infection. So the key is to get R below one, and then you see decay in the number of cases over time. And that’s what’s required for it to eventually disappear.Peter Slavin (23:43):I mean, we’ve been through one significant wave in this region and places like New York, but the best estimates are that only about 10, 15% of the population has been exposed. So there are a ton of people who have had no exposure to this virus. And if those people were to get exposed all at once, there’s no doubt that it would overwhelm our healthcare system.Peter Slavin (24:04):The key between now and when a vaccine is available, is to just make sure that ongoing spread happens slowly. We can’t eradicate it, but we can hopefully keep it under control so it progresses slowly. Hopefully primarily in younger people who are less likely to die, and just not in a rate that overwhelms the healthcare systems.Peter Slavin (24:24):And again, here in Massachusetts at this moment in time, we’re doing that. And hopefully that will continue as we move through the various phases of reopening and as other parts of the country get their problem under better control.Jay Ruderman (24:38):Yeah. I want to thank you for your leadership. There have been cases where there’s been lack of leadership on various levels of society. And I think that that contributes to the fact that people are not taking the precautions that they need to protect themselves and others. But I wanted to ask you, you run a major institution, healthcare institution at the forefront. This has been going on for many, many months. You must be dealing with a lot of personal stress. How do you handle this personally? And how do you take care of yourself and your family during this time, in order to continue to lead such an important institution?Peter Slavin (25:17):Yeah, no, that’s a good question. I don’t want to dwell on myself. I don’t want anybody to feel sorry for me, but certainly during the height of this, it was sort of nonstop, seven days a week. Life has returned to more normal now that the number of cases are under control and we’re providing lots of other care as well.Peter Slavin (25:39):But I’m working, as you can see right now, a fair amount from home. And because most of my day is rather than being in person to person meetings, is in Zoom sessions and conference calls and phone calls, and so not a whole lot of sense for me to sort of go into the hospital and sit in my office by myself when I can do that from home. So I’m practicing what I’m trying to preach about remote work.Peter Slavin (26:04):And this has been a stressful time. I mean, we are now, as I said to several groups in the hospital via Zoom, dealing with three epic issues. Any one ever on its own would be enough to keep us occupied, but we’re dealing with three simultaneously. One is the virus and the pandemic, and to continue to care for patients with it while we expand the number of other patients that we’re caring for. Second is dealing with the financial consequences of COVID-19 and steadying the financial ship of Mass General. And then lastly, this issue of racism and social justice, which has emerged so significantly in our society at this time.Peter Slavin (26:42):And so we’re just thinking about how can we, within our walls and more broadly, take dramatic steps to combat racism and advance social justice. And I think this is a unique opportunity in our history to bend the arc of the moral universe toward justice. And we’re committed to doing that as well.Jay Ruderman (27:02):Has Mass General begun to delve into the issue of racial inequality? From my own experience, my mother had a very serious heart issue, was hospitalized for a while at Mass General last summer. She had excellent care, and the doctors and nurses were of all different ethnicities, races, religions, from all different parts of the world and just top notch.Jay Ruderman (27:27):So in my opinion, I think Mass General was in a good place to start with, but I’m sure you’ve done extra work, seeing the national discussion of racial injustice that’s happening throughout all sectors of society.Peter Slavin (27:40):No, I think it’s something that we’ve been focused on. I think we’ve certainly made progress over the years, but I think we recognize that there’s a lot more progress that we need to make. I’m delighted to hear that your mother’s experience was a positive one. We do benefit from a very talented workforce that comes from all over the world. And I worry a lot about our current immigration policies and the impact that’s going to have on the quality of what we do in the longterm.Peter Slavin (28:05):But there’s a lot more that we can do on the racial and social justice front, so we’re finalizing a set of initiatives that we will launch. We’re going to be reviewing them with our board later this month. And we want to again, use this unique opportunity in our history and our lifetimes to significantly advance the issue of equity within our organization. And I think there are lots of ways that we can do it.Jay Ruderman (28:32):Well, Dr. Slavin, thank you so much for joining us today. This was extremely informative. Again, I want to thank you for all the work that you and your staff has done to keep our community safe and to help the world in general. So I know you have a lot of hard work ahead of you, but thank you for taking the time and joining us today.Peter Slavin (28:52):Well, it’s an honor to do that work and pleasure here, spending some time with you.Jay Ruderman (28:55):Be well.Peter Slavin (28:56):Take care.Speaker 2 (29:01):All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to Rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman.

Jay Ruderman (00:05):Many of us watch the news every day, we have a favorite show or host that we like to watch. Hi, I’m Jay Ruderman and this is All Inclusive.‍

Speaker 2 (00:21):All Inclusive, a podcast on inclusion, innovation and social justice with Jay Ruderman.

‍Jay Ruderman (00:32):Our guest today is one of the most recognized and respected journalists in America, Judy Woodruff, who is currently the Anchor and Managing Editor for the PBS NewsHour. Judy, thanks for joining us on All Inclusive today. How are you and your family doing during this time of pandemic?

‍Judy Woodruff (00:50):Thank you, Jay. As we sit here in the last days of the month of May, I have to say, we are thankfully doing well. We’re split up a little bit. Al and I, my husband, Allen and I are living in our home in Washington and thankfully we’ve been able to stay healthy and safe. One of our children, Ben, has been living with us and he’s healthy. Our son, Jeff, our older son, child, who has a number of disabilities and who lives with a program and actually lives in a group home of three adults and a supportive staff, they have all stayed healthy, the program is doing really well. So we have a lot to be grateful for and everybody’s healthy, and I hope you are too.

‍Jay Ruderman (01:30):Well, thank you. First of all, I want to start by sending you my condolences on some of your colleagues who have passed recently over the past few years, Gwen Ifill and Jim Lehrer, I know how much of a personal loss that was for you and a professional loss for PBS NewsHour, so please accept my condolences on their passing.

‍Judy Woodruff (01:51):Thank you very much.

‍Jay Ruderman (01:51):So what is it like for a leading journalist to cover the news of Washington and the world during a time of pandemic?

‍Judy Woodruff (02:02):Well, it’s been overwhelming. We were taken by surprise, just like everyone else, and we had to adjust very quickly when it became clear that we would need to work remotely. It’s not something we’re used to doing, we are used to broadcasting the NewsHour Monday through Friday from our studio in Arlington, Virginia, but we had to, on a dime, begin to put the apparatus in place for people to report remotely.

‍Judy Woodruff (02:30):I continued to anchor from the studio from about the middle of March till the middle of April, during which time I had these remarkable colleagues set up a studio, in essence, well it’s a studio here in my home, just about 15 feet from where I’m sitting, maybe 20. We put up a camera, television monitors, computer screens, lights, wires, more computer screens, it’s really quite something. And I went on the air from home starting on April the 20th, have been anchoring from here every night since then. It’s a reminder of just what we’re capable of doing these days. So it’s been both an incredibly sobering time, but it’s also been a time of learning and expanded understanding of what we are capable of doing, and frankly, what the American people are capable of doing.

‍Jay Ruderman (03:17):So, you have had a very interesting background growing up, you were an army brat, you moved around a lot. Can you tell us what that experience was like and how it led you into journalism?

‍Judy Woodruff (03:31):Well, it’s interesting because I didn’t know for the longest time what I wanted to do. You’re right, I grew up as an army brat, I was born in Tulsa, Oklahoma, father in the military and the army. We lived in Germany, we lived back in the U.S. for a while in Missouri and New Jersey, eventually went and moved to Augusta, Georgia where I finished high school. I knew I wanted a career, my mother had not even been able to finish high school herself, neither one of my parents had gone to college. And my mother in particular urged me to get an education to… Her mantra was, “Diapers and dishes can wait.” I started out studying math because I really liked math. And then ran into a couple of professors who didn’t think women should be taking advanced math, and simultaneously was studying political science, fell in love with politics and government, and so ended up majoring in political science.

‍Judy Woodruff (04:20):Thought I would work in Washington, worked here for a couple of summers for my congressmen. Really wanted to work in Washington, but it was at the late 1960’s at a time when women were, again, not very welcomed in politics or government and I was advised by others not to come back to D.C. So my senior year in college, I went to a professor for advice and he said, “Well, did you ever think about covering politics?” So it was almost as serendipitous as that. I thought, “Wow, covering politics,” and I started looking for a job, as I graduated and was hired as a newsroom secretary for an ABC affiliate in Atlanta. And that was my first job out of college and did that for a year and a half, ended up doing the weekend weather while I was a secretary at the station in their newsroom because the news director told me, “If you don’t apply for a job doing weekend weather, we won’t know whether you can ever be a reporter.” And I was persuaded, I needed to do it, so it was like Cinderella, Jay.

‍Judy Woodruff (05:19):During the week I was a secretary and on the weekends, I put on an appropriate dress and wore that on Sunday nights to do the weather at 11:00 PM. But then back to the, answering the phone and cleaning the film Monday through Friday. It was a way to learn, and whenever I would pester the news director to let me go out and cover a story, or learn to cover a story, his answer was, “Why would you want to do that? We already have a woman reporter.” I eventually was hired by another station in Atlanta, the CBS affiliate was hired to cover the Georgia state legislature. And that’s where I really, I truly cut my teeth as a reporter and learned to, fell in love with covering politics and covering politicians and understanding how to report on legislation and policy. But it was a long climb because it was the ’60s… By then it was the ’70s and women were being given more opportunities, thankfully, but it was a long climb.

‍Jay Ruderman (06:12):And how did your family, your parents, feel about you going into journalism? Were they happy with that career path?

‍Judy Woodruff (06:19):They really were just, I would say my mother in particular just wanted me to find a career that made me happy, where I could put my abilities to use and advance. She really wanted me to figure out what I wanted to do and then to pursue that, so she was glad with whatever. I think they were proud.

‍Jay Ruderman (06:38):I’m sure they were. Your interests in politics, I know that at that time there were few women in politics. Do you ever think about getting into politics yourself?

‍Judy Woodruff (06:50):No. When I worked on Capitol Hill, I was young, I was in college, I was just beginning to understand, frankly, the world around me. My parents, they were not people who followed the news very much. We didn’t subscribe to a newspaper, I think we subscribed to the Augusta Chronicle, but we were not a news consuming family. So that was something that I learned as I grew up, and I would say that as I followed politics, fell in love with it, I really never thought of myself as running for office.

‍Jay Ruderman (07:19):So throughout your career, you’ve covered many, many administrations, thousands of members of Congress, I got to know you before the 2016 election, but over these past three years, Washington and the national politics has changed. How has that affected you in your job and covering politics and just the atmosphere in Washington?

‍Judy Woodruff (07:43):It’s become, it was already a polarized place. And in fact, I mean, I’ve been covering national politics going back to the 1970’s. I covered Jimmy Carter’s campaign for president against Gerald Ford, I was a brand new reporter then, but sure, the parties fight it out, they have their ideas, it can get really rough and ugly at times. But I think we have gotten to the point now, and even before 2016, where you saw the kind of attack campaigns, if you will. I mean, I remember the birther campaign against President Obama, the kinds of… And it does go both ways, but it just has gotten uglier and uglier. And then in the last three and a half years, I would say since 2016, it’s even more so. We are in a completely polarized environment, and people often ask me, “How do you make it better?” I think perhaps the great silent majority rise up and say, “I can’t stand this anymore,” and, “We need to find ways to work together.” But right now you don’t see anything like that.

‍Jay Ruderman (08:45):So heading into the 2020 election, how do you see this unfolding, especially with COVID-19, with the pandemic upon us, it doesn’t seem to be ending any time soon. How will that change our politics?

‍Judy Woodruff (08:59):I think handling the pandemic, handling COVID-19, is almost certainly going to be the defining issue of this election. President Trump’s handling of this, his administration handling of it, is going to become a central feature of the campaign. It’s not the only thing, people feel that their jobs are coming back. Do they feel their retirement income is secure? How worried are they about taxes? And I think all of those things are going to be discussed. It’s going to be ugly, hopefully there’ll be some substance as well.

‍Jay Ruderman (09:34):Is there any concern on your part that we could reach an election in November of 2020, and either not have a clear result or not have either of the party accept the election for various reasons? Because of COVID-19 showing up at the polls, mail in ballots, and everything that’s being discussed right now.

‍Judy Woodruff (09:57):I think all of those are very serious concerns. As you know, there’s a push on the part of many Democrats right now to ensure that mail in ballots are available in November, you’re already seeing that with primary elections coming up. But at this point, President Trump is himself, is arguing against mail in, he’s warning that it holds the potential for great fraud, despite the fact that there’s been no evidence of fraud on any measurable scale anywhere in the country. So I think that’s going to be an issue and I think questioning election results, we American people now know that one candidate can win the popular vote, but the other candidate can win the electoral vote. So just a matter of a few thousand votes in a few states as we saw in 2016, can make all the difference.

‍Jay Ruderman (10:44):Do you think that the level of discourse in our country, which may be shaped by our political discourse and has reached sort of a very low level of attacking individuals for various things, from their physical appearance to all sorts of other things, will we ever return as a society to a more balanced, respectful public discourse? Or do you think that what we’ve experienced over the last three plus years will affect us going forward?

‍Judy Woodruff (11:16):I think, because so much of this depends on the example set by our leaders, if we have leaders who model respectful discourse and who model respectful conversation and exchange, if we have leaders who model that, kind of a respectful demeanor, I think that could go a long way toward effecting the American people. But without that, I don’t see how we turn it. So, unless we take it upon ourselves to say, “That’s not acceptable,” and I think we do that inside our families, we try to teach our children to have the values that we think are the most important values of compassion and respect and honesty and integrity. And my hope is that those will override some of these other more negative values that we see being demonstrated in public life.

‍Jay Ruderman (12:06):So is it that much harder to be a journalist today? I mean, I watch many of the press conferences that either go on in Congress or in the administration, and often there is attacks on journalists themselves for simply asking questions. To me, it seems like it’s a very difficult position these days to be in.

‍Judy Woodruff (12:25):And actually repeated attacks on my colleague, Yamiche Alcindor who covers the White House for the NewsHour. She’s been personally criticized, the president has called her questions, “Dumb,” he’s used various adjectives to describe her questions and to describe her, and many other journalists as well. It is the case that it is tougher to be a reporter today, no matter whether you work in television or print, because the very essence of what you do is being challenged by people in charge. They are challenging your line of questioning, your right to ask challenging probing questions, and now I think much of the American public, if you look at the public opinion polls, now has accepted that. They don’t agree with the press. They don’t like the fact that the press is asking tough questions.

‍Judy Woodruff (13:16):It’s not the role of the press to be liked, it’s the role of the press to cover what’s going on and to do it in a fair way, not a cynical way, but to be skeptical, to always look for the facts. That’s what our job is. And to be held accountable ourselves, and when we make mistakes, we should be called to account for that. We shouldn’t be excused for getting it wrong ever, and we shouldn’t ever make mistakes. My message, Jay, to my colleagues has been and continues to be, our job is to cover the news, keep our head down, but to be the eyes and ears to the American people. That’s what we’re here to do to, to ask the questions they would ask, to do the kind of deep reporting they would want us to do, and to hold public officials accountable.

‍Jay Ruderman (13:57):What do you think about this whole thing of fake news? I mean, this is something that’s sort of emerged, I mean, a little bit with Nixon, rallying against different news sources, but we hear a lot about fake news. You’re fake news. How does that impact the whole role of journalism and people accepting journalism as non partial?

‍Judy Woodruff (14:19):I think we have to be careful about the term because I mean, President Trump uses the term fake news for news that he hasn’t liked in particular, news that he thinks is unfairly critical of him. I mean, I think we have to be careful about that term, which he uses and then what may be legitimately a false story. I mean, some news organization got hold of something that couldn’t be born out by facts and they’ve run with it. False news, who would ever support false news? Of course not. Our job is to tell the truth, to try to get the facts. Truth is a much more elusive thing, you may not know on any given day what the ultimate truth is, but you could keep working at getting at the facts.

‍Judy Woodruff (15:01):But I think, so we fight against anything that’s false, but fake as a label, I think we have to be careful. I certainly don’t ascribe to what either the president or some others have said when they just blanket, in a blanket way, labeled an entire news organization, fake news. We just have to keep on keeping on and remind ourselves what really matters here, and that is the American people.

‍Speaker 2 (15:30):You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive. Please remember to subscribe, rate and review us wherever you are listening.

‍Jay Ruderman (15:47):You’ve covered many national debates, are there any particular incidents that stick out in your mind as particularly memorable?

‍Judy Woodruff (15:55):I have to say, looking back historically Jay, the debate that I moderated in 1988 when I was just a child, I was actually with the NewsHour and I was asked to moderate a vice presidential debate between Lloyd Bentsen and Dan Quayle. So it was Michael Dukakis’ vice presidential running mate, Bentsen and George H.W. Bush’s vice presidential running mate, Senator Dan Quayle. And the famous line, of course, from that debate was when Dan Quayle looked at Senator Bentsen and answering the question and said, “Senator, I’m like John Kennedy because,” trying to say, “he was young, I’m young, and he knew a lot and I know a lot,” and Bentsen’s answer was, “Senator, I knew Jack Kennedy, you’re no Jack.”

‍Jay Ruderman (16:40):I remember that well.

‍Judy Woodruff (16:41):Yeah, but of course what happened after that, that we all thought at that debate that Bentsen had knocked it out of the park, but of course he and Dukakis lost to Bush and Quayle. You never know whether what happens in a debate is going to decide an election and often it hasn’t.

‍Jay Ruderman (16:56):Sure. What about some of the major news events that you’ve covered over your long career, whether it be 9/11 or the wars in Afghanistan and Iraq or presidential elections, is there a particular story that sticks out to you that you just carry with you? Is something that’s very poignant to you?

‍Judy Woodruff (17:17):The moment that was the most searing, I guess, was I was there as part of the press pool the day John Hinckley shot President Reagan. I was there at the Washington Hilton Hotel, just a few feet away on the other side of the president’s car, and we didn’t know at that moment that President Reagan had been hit. And this was 1981, so there were no cell phones then and we all had to run to a telephone to report. But that’s, no question, that was the most searing for me because I was right there as an attempt was made on the life of a president.

‍Judy Woodruff (17:49):But I have to say, covering 9/11, I was with CNN then, and I was anchoring our coverage out of Washington at the same time it was being anchored out of New York. And just watching the towers come down and knowing what it represented, I think that was the closest I ever came to falling apart on the air. I’ve covered a lot of tragedy on the air, everything from the happiest moments to certainly the worst moments in people’s lives, but knowing what that meant and knowing just the fright that we all still felt, because we didn’t know what had happened or why it had happened. That was very difficult. It was hard. I mean, it was a horror. It was awful.

‍Judy Woodruff (18:29):Having said all that, Jay, right now is just unspeakable. I mean, night after night, after night, since the beginning of this pandemic we’ve been covering heart-breaking stories about people losing their lives, about nursing homes, about healthcare workers unprotected. I mean, today we’re airing a story, you won’t be airing this interview today, but tonight on the news, our plan is to air a story about what caregivers are going through right now. People who are at home taking care of either ailing parents or grandparents, and these are individuals who don’t have any relief. We’ve interviewed a number of them, and tonight we’re going to interview someone from a caregivers group, just talking about what these individuals are going through.

‍Judy Woodruff (19:11):So, we’re seeing how this pandemic has affected people of every background, but in particular, those who are least able to fight it. And we have a window into the lives of people, like these caregivers, who they already were dealing with a challenging situation and now it’s almost unimaginable. And at the same time, Jay, we’re covering these uplifting stories of people who are working on the front lines, the sanitation workers, the food delivery people, the people who are going to work every day in these hospitals and taking care of folks, putting themselves at risk. I mean, we’re seeing real heroes. So, I’ve never covered anything like this story and it’s what motivates me every day to get up and keep going, because the American people need to know what their fellow Americans are doing right now.

‍Jay Ruderman (19:59):I didn’t realize that you were so close to the attempted assassination of President Reagan or the towers of 9/11, and especially the pandemic. How do you set it aside at night? And the other thing that I would just couple that with is social media, which is 24 hours a day. What impact does that have on journalism? Is that something that you’ve encountered, where that makes your job either easier or more difficult? But it seems like we’re at a case now where it’s very difficult to put this aside and to have a life outside of your professional life.

‍Judy Woodruff (20:35):How do you set it aside is you just really don’t. I mean, I carry this around with me all the time. I am able to relate to my family and we try to find a moment on the weekends to watch something to take our minds off of it. Al is rewatching Curb Your Enthusiasm with Larry David to take his mind off of what we’re going through, and I’ve been watching just anything to take your mind off of this. But in the end, we’re swimming it, it’s everywhere, and we know that, and every waking moment is covering this pandemic. And so, you just accept it and you keep going because that’s what we’re dedicated to do.

‍Judy Woodruff (21:10):Social media is both something that’s great fun but it’s also, I think, very painful. I mean, I see people saying things in social media, I try to stay moderately active on Twitter. So I see the good of it and I see the fact that we now can share information. I mean, it’s become a haven for journalists, it’s where we go to find out what’s going on in the world. But it also can be very mean and just painful.

‍Jay Ruderman (21:34):We’re coming up on the 30th anniversary of the American Disabilities Act, which is the landmark legislation, civil rights legislation, for people with disabilities. What do you remember about this specific event that was signed into law by President George Bush?

‍Judy Woodruff (21:48):Jay, I was covering the White House, covering Washington then. I remember we covered it, it was an important story, but it didn’t, I would say the ADA didn’t become real to me until after our son, Jeff, who was born with spina bifida. But at the age of 16 in 1998, he was injured and in way that left him profoundly disabled. And that’s when I began to have some understanding of what it is to have a disability, what it is to be part of a family, to understand that when one member of a family has a disability, the entire family is affected. And frankly, to understand that this is something that affects many more Americans than we realize.

‍Judy Woodruff (22:31):I always thought I was understanding and sympathetic, but I didn’t really understand how invisible people with disabilities can be, how people just look past them or through them or around them or over them, because for whatever reason, they don’t want to deal with it or they don’t know what to say. They don’t know how to handle it. And of course, that’s only one aspect of life with a disability, but I think our society needs to do a much better job of incorporating people disabilities into life and to give them the same opportunity the rest of us want to have in life, and that is to be a contributing member of society. I think that, that is all I know my son wants. I’m committed to doing whatever I can to get that message out.

‍Jay Ruderman (23:18):Yeah Judy, one in five Americans have some form of a disability and they’re the largest minority in our country, yet inclusion is a nonstop battle as you mentioned. The unemployment rate for people disabilities is much higher, and if you look at the most recent events surrounding the COVID-19 pandemic, there’s a real fear that people with disabilities will not receive the same care, such as receiving a ventilator and that a person without a disability would receive. Why do you think that in the year 2020, there’s such a disparity? And what do you think needs to happen to make our society a more equal society for people with disabilities?

‍Judy Woodruff (23:57):I think there’s disparity because people with disabilities are still a minority. Their voice is not in the room when these decisions are made in terms of how to write legislation and who’s affected by that legislation. They are not there sufficiently in the halls of Congress or in the halls of the White House or governor’s offices, and those voices have to be in the room when those decisions get made, when legislation is drawn up. We need to elect more people to office with disability. We need to see more people with disability holding positions of influence in government. And we need to keep fighting the good fight from the public standpoint, from the standpoint of nonprofits, foundations, like the Ruderman Foundation, and making these arguments and holding officials accountable. It’s a never ending battle. I mean, I think of the Civil Rights movement, I think of the women’s movement to a degree, I think we have to think of the fight for disability rights in the same way.

‍Jay Ruderman (24:55):You’ve interviewed so many people, thousands of people, over your career. Is there anyone that you had wished to interview, but you were never able to-

‍Judy Woodruff (25:01):You mean in connection with disability or-?

‍Jay Ruderman (25:04):No, just in general, in your career, was there one person that you’re like, “I really wish I had been able to interview that person.”

‍Judy Woodruff (25:11):Well, there’s so many. I’ve been very lucky to interview every president since Jimmy Carter, so that, not the sitting president, not President Trump, but every president from President Carter through President Obama, and even was able to interview President Ford after he left office. There are some major figures, I mean I would love to have interviewed Pope John Paul. I mean, I have… There are figures in American life. I wish I had been around in the time of Eleanor Roosevelt to interview her, and I’m trying to think of others who changed American life or changed our understanding of the world, and frankly have made us appreciate what’s important. There are so many, I did have a chance once to interview Mother Teresa, so that was a treat from a distance, was able to talk to her.

‍Judy Woodruff (25:54):And I will say this, Jay, that some of the most illuminating interviews for me have been ordinary Americans. In covering political campaigns over all these years, I found that sometimes there’s great wisdom that lies with real people, people who live normal lives and go about those lives and overcome a lot because they have to, they don’t have any choice. And so, those have turned out to me to be some of the most meaningful interviews I’ve ever conducted.

‍Jay Ruderman (26:20):Yeah, my final question to you is looking into your crystal ball, there’s so many journalists throughout our nation who look up to you and you’re a mentor to them, and they aspire to your type of journalism. How do you see journalism 20 years from now?

‍Judy Woodruff (26:37):Well, thank you for that. I hope if that’s the case that I can live up to setting the example every day. When I started out my career I had a producer who told me when I worked in, covered local news in Atlanta, he said, “Woodruff, you’re only as good as your last story.” So we always feel pressure every day to make sure this story, this day, this interview, is as good as it can possibly be because you’re being judged and we should be judged. We are here for the American people. Where will we be in 20 years? I think we’re going to be much more technologically advanced than we are today. I think there will always be a need for probing questions and the kind of deep journalism, investigative journalism and reporting that we have today.

‍Judy Woodruff (27:23):To me, it’s hand in hand, you can’t have a democracy unless you’ve got great reporting going on. So, I think it may look different technically, technologically. People, we may be looking at our wristwatch to read an entire newspaper, or maybe we’ll have a chip implanted in our eyeglasses. I think that the delivery methods will change, I hope there are still newspapers around, but mainly I know that we will always need reporters because without reporters asking tough questions, holding people accountable, frankly, shining a light on the parts of our country and of our world that otherwise wouldn’t get attention, then we can’t advance as a human race and we can’t advance as a country, as a democracy.

‍Judy Woodruff (28:06):We have to know what’s going on, we have to have information, and that’s why we rely on journalists. We can’t depend on our elected officials to do that for us. I mean, they do a lot of important things, we’re always going to need a free press. The founding fathers were right about that, that’s why they put it in the first amendment. So, we all need to support good journalism because if we don’t, it is going to get weaker and we need it to stay strong.

‍Jay Ruderman (28:30):Thank you so much, Judy, it’s been a real pleasure talking to you. I really appreciate your time. I wish you and Al and the whole family to stay safe and healthy, and thank you for all you do for our nation and the world. I appreciate your time.

‍Judy Woodruff (28:45):Jay, it’s an honor to talk to you. And so, I just have to say how much I appreciate the work you and the Ruderman Foundation do every day.

‍Jay Ruderman (28:52):Thank you so much.

‍Speaker 2 (28:58):All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman.

Jay Ruderman (00:05):Journalism has changed a lot in the last decade with the boom of social media. Our guest today knows that better than anyone.

‍Speaker 2 (00:20):All Inclusive, a podcast on inclusion, innovation and social justice with Jay Ruderman.‍

Jay Ruderman (00:31):Hi, I’m Jay Ruderman. And on today’s show, we’re excited to have Emmy award winning TV host Zuri Hall. Zuri, Thanks so much for joining us today on All Inclusive. So you’ve been covering the Black Lives Matter movement and interviewed people like Dr. Melina Abdullah, the cofounder of Black Lives Matter in Los Angeles. What were your takeaways from that interview?

‍Zuri Hall (00:54):My biggest takeaway from talking with Melina is just that there’s movement happening, but there’s still so much change to be had and what’s really encouraging is the fact that so many people now are getting on board. You think about the time, maybe two, three years ago, and just the phrase, the sentence, the hashtag, right? Black Lives Matter, had such a charge for certain people who were offended by it, or couldn’t understand why someone might say something like that as if that’s such a radical statement. And I think now people are realizing the essence of the movement, the truth of it, which is all lives can’t matter until Black Lives Matter. And that’s what this movement is about. And that’s what Melina made really clear in our interview. So that was important to get across.

‍Jay Ruderman (01:39):Well, there’s obviously something happening in our country. I’ve been to a couple of protests locally, even this weekend, I was driving with my wife in rural Massachusetts, and we were stopped by a protest and this was a town that probably had almost no black residents. And there were hundreds and hundreds of people out there protesting for Black Lives Matter. So I think, in the United States, in almost every city in town and in the world, people have reacted to the injustice of the murder of George Floyd and other black people who have been killed at the hands of the police. So I think that there is something bubbling up to the country. Unfortunately, it took several really terrible murders for this to happen, but I do sense that there is a social justice change happening in our country right now.

‍Zuri Hall (02:33):A hundred percent, I totally agree. This shift is definitely happening. I hope it continues with this momentum. It definitely feels as if we’re moving forward together for the first time, it’s encouraging, it’s motivating, it’s great to see that. And I hope we see more of it, but this definitely feels like a shift that will be permanent. And I’m grateful to be a part of reporting on it.

‍Jay Ruderman (02:55):You report mostly in the entertainment industry. Do you feel that the entertainment industry is waking up? I mean, they’ve had other instances in the past with Oscars So White and there’s been, other movements. Do you feel that there is a wake up call where corporations and studios are now saying, “Okay, there’s something happening in America that we need to respond to?”

‍Zuri Hall (03:20):Yeah, I do feel like Hollywood is waking up. I mean, even though the stories that we’re telling are changing and evolving and shifting even here at Access Hollywood we’re having the conversations of how can we be a part of amplifying those black voices of sharing black stories? And not just black stories. This moment is ours. This is a moment that we need to be focusing on, but diversity and inclusion, transcends us, it transcends just black people. This is a fight that’s extremely important and there are other fights too and I think our industry is finally waking up to that and the difference is, I think the industry has known for a while, but you can be aware of a problem and still not be committed to really fixing it.

‍Zuri Hall (04:08):And these marginalized populations, black people included, but other marginalized groups I think are just really tired of the lip service, tired of the poster boy or the poster girl that says, “There’s our check mark. We hit our diversity or inclusion quota for the day, the quarter, the year.” And we’re really wanting fundamental change from the top down. And it’s been encouraging to see, vice-presidents, executives who have advocated for diversity inclusion for a while in our industry, be promoted, have talent who have fought for diverse and inclusive stories, have their voices really heard and their pitches really considered in a different way now, so the needle is definitely moving.

‍Jay Ruderman (04:55):That’s awesome. I hope it continues. Can you tell us a little bit about, where you grew up? Did you have any role models when you were younger that that sort of inspired you to take the career that you assumed?

‍Zuri Hall (05:07):Yeah, so I grew up in Toledo, Ohio. I went to The Ohio State University, go Bucks, and immediately after graduation, I jumped right into local news and kind of just climbed up the local newsletter for a few years before getting my big break. My first national gig at 25 out in New York for Fuse TV. Growing up role models, I mean, it was really my family that motivated me. I know that’s kind of a little bit cliche, but I never really had a poster on the wall of anyone that was my North star when it came to navigating through the industry that I knew I wanted to be in. It was the hard work that I saw my mother and my father put in, my mother’s father, my Papa, they just taught me the value of ambition.

‍Zuri Hall (05:54):They taught me the value of education, especially higher education and integrity, more than anything. The value system I was instilled with that’s really been the North star through this industry for me. And so I’m grateful for that. The biggest role models I’ve had are just my parents loving me and supporting me and letting me do all of the crazy things I wanted to do as a kid. I was just like, “I’m going to Hollywood, I’m packing up, I’m going to LA.” And they’re just like, okay, how do we support this girl and her dreams that are so different from maybe what they were expecting.

‍Jay Ruderman (06:32):It sounds like you had a really supportive family and you’ve entered into an industry, which is not an easy industry, as you know. Was journalism something you were always interested in? Was it a passion of yours?

‍Zuri Hall (06:44):I was always interested in the truth and in what was just, and right and fair from a very early age, I’m talking like six, seven, eight. I didn’t necessarily think that it would steer me into journalism in the sense of covering truth and really pushing for honest and real coverage of stories that are affecting us. To be honest, I kind of fell into it. I’ve always been passionate about entertainment, about being on stage. I’m a theater geek. So I grew up in theater, when I won my first position in television presenting, it kind of happened by chance. I fell into a role after competing for my first job out of college. And I got a one year deal with that local TV station. And I realized, well, this is really fun. I’ve always loved singing and acting and producing and writing, but I’ve never thought about covering people who do this also as a livelihood.

‍Zuri Hall (07:40):And it was a place for me to show my personality. I got to entertain people still, but also inform them. And then when I moved to Dallas, Texas to anchor for the Evening News down there for the CW affiliate, that was my first encounter with hard news and I wanted that experience. I wanted to be at an anchor desk. I wanted to be covering important stories and current events in a factual unbiased way. And that’s where I got to work that muscle. So I kind of went with the momentum and over time fell into journalism. And it’s been great because even now that I’ve come back to Hollywood, which was always the end goal, I see a lot of what’s happening and try to report a lot of what’s happening through that journalistic lens that I developed when I was doing hard news back in Dallas, Texas.

‍Jay Ruderman (08:27):So when you were in Dallas, were there ever any stories that you were covering where you’re like, “Oh my God, this is just really difficult to cover.” I used to be an assistant district attorney. There are cases that came into court that were just heartbreaking, or maybe it struck you in a personal way that you were just like, this is just too hard.

‍Zuri Hall (08:49):Overall I think just the general death and destruction and corrupt nature of humans at times, it was disillusioning to me there, for sure, because you’re taking those stories home with you every day and you don’t just shut off your empathy or your human emotion because it’s time to check out. So that did cause a bit of emotional exhaustion, but I would be honest in saying there was no one story that I can think of quickly I’d have to really rack my brain, that was probably about seven years ago, eight years ago that I was down in Dallas, but it was just the overall feeling of reporting on really difficult things that kind of took a toll on me.

‍Jay Ruderman (09:33):Journalism in general is a very dangerous profession. People who are out there, whether they’re foreign or where they’re local, I mean, I’ve been watching many of the protests and there’s been several journalists who’ve been detained and arrested. I mean, it can be a very dangerous profession.

‍Zuri Hall (09:51):It can be dangerous. And that’s why I feel like, the media personalities, the hard news personalities who commit to doing that work, they’re putting themselves literally on the front lines of these important stories to get us the information that we need. And I respect that so much. I was honored to be a part of it for a short amount of time, but that one year in Dallas really just made me gain an entirely new level of respect and admiration for the journalists who are committed to doing that work because it’s important. And especially in a day and age of fake news and crazy headlines and people are so quick to get things out and be the first to a story that they’re not even operating with the journalistic integrity to get the story right. And so the people who are committed to doing that are more important now than ever.

‍Jay Ruderman (10:39):How do you think that social media has changed journalism? Do journalists have to be very active in social media in order to raise their profile in order to move ahead in the industry?

‍Zuri Hall (10:52):That is a question I ask myself sometimes, it’s almost like we have to live these double lives at this point. I think we all do this transcends by the way, entertainment industry or hard news journalists, or even TV personalities. It’s like we have our day to day on the ground life. And then we have this digital paper trail that we have to curate because if it’s not on the internet, it didn’t happen. And I do sense a shift. I hesitate to say it because I wish it didn’t have to be true, but I do sense a shift towards personal branding online being really essential to showing people who you are because I’m noticing people really want to get behind people, places and things that they can believe in. If I’m going to support your business at this point, I need to know what your business stands for.

‍Zuri Hall (11:48):Who are the people in positions of power at your business? What causes, nonprofits or foundations are you supporting or working with? What value system does that corporation operate with? And so we feel the same about our public figures now. There was a time when musicians and actors and actresses, it was like, entertain us, give us the show, give us the song and that’s all we want from you. We don’t want you to get political, but in the last five years, what’s been really interesting about my work in entertainment news journalism is I was starting to cover actors, actresses, singers, who were either speaking up because they just couldn’t stay silent anymore.

‍Zuri Hall (12:27):That’s just how big this bubble of tension and political tension, social justice, etc, was becoming, or they were being pressured by their fans to be held accountable in a way that they never had before. When you are a journalist, it’s difficult because especially in hard news, your job is to report it unbiased and just give the information as it is. But we’re in such a polarizing world even with our journalists, you start to get more commentary, which I think people appreciate.

‍Speaker 2 (13:03):You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive.

‍Jay Ruderman (13:14):Please remember to subscribe, rate and review us wherever you are listening.

‍Jay Ruderman (13:20):I mean, I don’t want to put you on the spot, but have there been any interviews that you’ve had that were particularly interesting or your favorite people that you’ve interviewed in the past? Because you’ve interviewed so many people.

‍Zuri Hall (13:32):Oh my gosh. Oh gosh, there are a ton. I mean, Oprah, just Oprah, Oprah, Oprah. I love that woman I’ve loved her before I met her. I have had the pleasure and the honor of interviewing her three times now. And what I love most about her is they sometimes say, “Don’t meet your idols.” But she just lives up to everything you might expect. She has such a gift for making people feel seen. And upon meeting her, you immediately realize how she became Oprah. She’s giving you all of her Oprah energy and it’s like, you two are the only ones in the room. I’ll always appreciate any time I get to talk to her.

‍Jay Ruderman (14:11):Well, she’s certainly one of the most respected people in America and probably around the world. Where do you think journalism is going in the future? How do you think it’s going to change?

‍Zuri Hall (14:22):What I actually think when it comes to changes and journalism is I think the change will come from the consumer and the viewer. I think to my earlier point, we are getting to a point where we are appreciating true journalism and real news because we have had a lot of time where we don’t know what the truth is and because of the way social media is going, because of the way our platforms have just become algorithm fuels, echo chambers of whatever we consume, whatever we want to hear, there is even more need for personalities, anchors, reporters operating with journalistic integrity. When things get real, we’re coming out of a global pandemic, there were so many facts intertwined with myth. And we went to the people who we could trust to disseminate fact from fiction. And so the change that I see and I’m encouraged by is the fact that those people who deserve that acknowledgement and that respect are starting to get it again.

‍Jay Ruderman (15:33):Right. That’s so true. You hosted a show that was called, What’s Good with Zuri Hall, which was an E! News original series that takes bite-size deep dive look into pop culture topics that celebrities explore diversity in Hollywood, speaking of diversity and inclusion, what can the entertainment industry do to be more inclusive and more diverse?

‍Zuri Hall (15:56):A lot of times I think people see us, the talking heads if you will, or that the faces, that the hosts, the actors, the actresses, and let that be the only reflection they need to see, to decide if a company or a production or a studio is diverse or inclusive. But I think we need to do it from the top down. We need executives. We need people in positions of power. We need producers and writers who also reflect the talent who were advocating for, or talking about diversity and inclusion. If we can make that top down shift happen, that’ll be the biggest way to do it honestly. The power is behind the scenes. We need to make sure diversity and inclusion is reflected there too.

‍Jay Ruderman (16:37):You emceed a program for our foundation many months ago before COVID where we honored the Farrelly brothers for including people with disabilities in their films and really taking a leadership role. Do you see a point where our society is moving in the direction of becoming more inclusive for all different types of people in our society?

‍Zuri Hall (16:58):Whether it is people living with disabilities, whether it is indigenous populations, whether it is the LGBTQ community, we all need to be each other’s allies. There is not one cause, and then we’re done. And what’s exciting about this time is I think people are really opening themselves up to humbling themselves and learning that they have so much more to learn, myself included. That is so important for me to say, I can’t overstate it enough. The one thing I know is that I do not know much. And the blessing is we are all starting to have these conversations together and creating safe spaces to learn. So I know I’m committed to being a better ally to learning how I can advocate more for marginalized communities, whether it affects me or not, because I hope that people are doing the same for me. So yeah, I’m very hopeful.

‍Jay Ruderman (17:44):In April, you hosted the AlphaBabe Power Panel, where you had some of the leaders in the entertainment industry join you to talk about their advice and stories in the industry, and it raised thousands of dollars for COVID-19 relief. Can you talk a little bit about that and what gave you the idea to do it? And do you think you’ll do it in the future?

‍Zuri Hall (18:08):AlphaBabe was a concept that came to me many years ago, probably six or seven years ago. And it was just at the time of social media platform to empower young women especially to one, embrace their ambition, not shy away from it to embrace the quote unquote alpha in them I think traditionally women who are labeled alpha, it’s a bad thing. They try to imply, “Oh, we’ll never get a man.” As if we need one to go through life happily. If we want one that is also awesome, but there was just such a negative connotation to that world. And it was before the shift that I’ve seen in the last six or seven years. So even though we still need it I’m happy to say that in the six or seven years, since I came up with the concept, we’re seeing way more of this energy and this narrative being pushed to the forefront, but it was just a way for us to celebrate our duality.

‍Zuri Hall (19:01):You can be strong, you can be alpha and still embrace your femininity and the things that make you soft and sometimes vulnerable. And I really wanted to use the platform to cater to career eccentric women and help equip them with tools and resources, to kind of boss up to their best life and go after whatever their goals are with full speed. And when the pandemic hit, it was this bittersweet realization I think for a lot of us that, hey, we don’t have to necessarily be in person to affect change, to move the needle in the way that we’d hoped. I’d been putting off hosting an AlphaBabe event for so long to raise money for various initiatives that I was passionate about because I think, “Oh my gosh, it’s going to take so much money.” Or, “I need to get sponsors.”

‍Zuri Hall (19:50):Or, “What about a venue?” I’m working full time, two jobs sometimes, just how? How? How? And quarantine forced us all to slow down and sit down and we all wanted to help, however we could, and being in Hollywood, I have amazing relationships that I’m so grateful for. And I have young women and men who ask me all the time for career advice and I help one-on-one whenever I can, but I just thought this is a really great opportunity to reach a bunch of people because everyone’s sitting at home, if they’re lucky enough to be able to quarantine at home and we can raise money for an important cause, which is relief efforts for COVID-19. So I got together some of my industry friends, recognized media personalities, hard news journalists, etc. And we hosted a virtual event and sold tickets.

‍Zuri Hall (20:45):And we had hundreds of men and women on there soaking up our knowledge and our wisdom from decades combined in the entertainment industry. And then we donated 100% of those net proceeds to COVID-19 relief efforts across the country. So that was really encouraging for me because it made me realize doing good and helping doesn’t have to be so hard. Like with a little bit of creativity and effort, it can be easier to do the work then maybe we sometimes realize, and that was encouraging. So I’m looking forward to doing more events like that.

‍Jay Ruderman (21:25):Right. Well, congratulations on that.

‍Zuri Hall (21:27):Thank you.

‍Jay Ruderman (21:27):So many people know you from Access Hollywood covering red carpets from the Macy’s Thanksgiving Day Parade, and many other shows and events, and you were also on American Ninja warrior. Have you ever tried the course?

‍Zuri Hall (21:42):Oh my gosh. I am smart enough to not try that course. Jay, if you ever want to try the course, you let me know. When we get you up there you can let me know how it is.

‍Jay Ruderman (21:51):It looks pretty difficult.

‍Zuri Hall (21:53):Yeah, it’s massive. It’s an entirely different beast and it’s one thing on TV, but I’ll never forget the first time I walked up to it. Because I thought I might try it honestly. But the first night I walked up to the course and saw it in person. I was like, absolutely not. I value my limbs. I value my motor functions. I value the fact that right now everything is intact and with me and how clumsy I am and not athletically gifted is just probably a recipe for disaster. So I’ll stick to the sideline reporting.

‍Jay Ruderman (22:24):I think the men and women who go through that course are exceptional athletes.

‍Zuri Hall (22:29):They really are.

‍Jay Ruderman (22:29):And that’s something that most of us don’t-

‍Zuri Hall (22:32):A hundred percent agree.

‍Jay Ruderman (22:34):You have been a guest star on several shows and you also studied improv in New York City. Do you like improv and do you think it made you a better reporter? And do you think that you would ever consider going into acting?

‍Zuri Hall (22:50):I do like improv in the way that you like anything that’s extremely uncomfortable in the moment, but you feel good for having done it on the other side, it’s like working out for me because I hate working out every session is torture, but after I’m like I should do more of that, improv is the same thing and I would love to do more of it. I think it helps me in hosting and the conversations that I have that I moderate, whether on camera or on stage to just kind of be able to go off the cuff and feed off of the person, acting yes, I would like to actually, it was my first love. I minored in theater when I was at university, I’ve done a lot of stage work and a couple of guest appearances. I did an appearance on The Morning Show, Jenny Aniston’s project with Reese Witherspoon over Apple TV. And that just kind of reignited my acting bug. So maybe we’ll see some more in the future. Never say never.

‍Jay Ruderman (23:42):How long did it take you to get comfortable in front of the camera?

‍Zuri Hall (23:47):I think I was always a bit of a ham when the camera came on, even when I was really young and I think it was because I was so shy, I was painfully shy, super reserved through high school, pushing into college to the point I sometimes I would feel uncomfortable looking people in the eyes. I remember my granny always kind of gently scolding me and saying, “When you speak to someone, you look them in the eyes, it’s a sign of respect for them. It’s a sign of respect for yourself.” And that was just so hard for me to do, so the camera was always my permission to be a thing that I didn’t feel I was naturally in everyday life. So if I was on a stage acting or talking into a camera, it was like this automatic permission to just be who I knew I could be.

‍Jay Ruderman (24:32):You have been very involved and very social conscious in volunteering. What are some of the causes and organizations that are important to you?

‍Zuri Hall (24:41):I’m really passionate about inner city youth and single mothers, especially those raising underprivileged youth. I’ve done a lot of work with the Alexandria House here in Los Angeles, which is a transitional home for single mothers and their children. And what I really love about that home specifically is they let children come who are young girls and boys up to the age or through, I think about 17 years old. And so I volunteered there and help when I can. I’ve been an advocate and a part of the Know Your Girls campaign in association with the ad council, which has helped raise awareness for black women and breast cancer, which is a disease that statistically affects us at an alarmingly higher rate than it does our white female counterparts.

‍Zuri Hall (25:33):And now I’m looking for more ways, like I’m starting the work, being able to share space with everyone at your event for inclusion with the Ruderman Family Foundation was really special for me and really eye opening for me and really kind of lit a fire in me to do more work in that space also, and learn how to become a better ally in that space. So I use my platform in the ways that I can, I’m really open to people, reaching out to me and sort of presenting ideas about how I can use my platform better, because like I said, I’m still learning and there’s still so much to be open to. So that’s been a really exciting thing to commit to, especially in the last two to three years, but continuing to do that work is something that I’m really committed to.

‍Jay Ruderman (26:20):Yeah. Well, I want to thank you because at our event, we highlighted the dearth of people with disabilities in front of the camera and there are plenty of people with disabilities who are talented. And I think that people like yourself and the Farrelly brothers and other people in the audience like Larry David have the power to really raise this issue. And I think we will get to the point where it’s going to seem unnatural to have disability played by someone who does not have that disability. So I want to thank you for being interested in that. Finally, I just want to ask you- your partner, Sean Culkin, who plays for the Los Angeles Chargers and he played during college at the University of Missouri and you are a graduate of Ohio state. If the two schools were playing in a national championship game, who would you-

‍Zuri Hall (27:13):Oh way to raise the stakes Jay, I did not expect national championship title on the line here. Oh man, that’s a house divided. I know that for sure. I’m a Buckeye through and through. I got to be honest. The question would be if in some impossible world, Sean, were still playing for Missouri, who would I be cheering for? And then I might have to sleep on it. I’d have to meditate. I’d have to figure out where my loyalty lies. Oh goodness, can I plead the fifth on this one? Can I exercise my right?

‍Jay Ruderman (27:52):Sure. Yeah, I don’t want it to get you in any trouble. And he’s a wonderful guy and you’re really lucky. He’s lucky. So it was just a hypothetical I didn’t want to put you on the spot. But anyway, Zuri it’s been a pleasure speaking to you.

‍Zuri Hall (28:10):Same here.

‍Jay Ruderman (28:10):You recently had a birthday and I want to wish you a happy belated birthday. I’m sure it wasn’t easy celebrating a birthday during COVID-19. It’s not like every year, but you’re doing fantastic work in the entertainment industry. And I think you have an amazing future. And on top of that, you have a conscious, you care about your community, which not everyone in the industry does. So it’s been a pleasure getting to know you, and I really appreciate you appearing on our show today.

‍Zuri Hall (28:42):Jay, thank you so much for taking the time. The honor was all mine and this is great. So awesome to talk with you a little bit more.

‍Jay Ruderman (28:49):Thank you. Take care and be safe and be healthy.

‍Zuri Hall (28:52):You too.

‍Speaker 2 (28:58):All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.

Jay Ruderman: Well, the COVID-19 pandemic stopped many people from going on vacations, traveling for work or attending a big family event. When we do all get back to normal, many of you may stay at a Marriott Hotel.

‍Narrator: All Inclusive, a podcast on inclusion, innovation and social justice with Jay Ruderman.

‍Jay Ruderman: Hi, I’m Jay Ruderman and this is All Inclusive. Our guest today is Richard Marriott, who is the chairman of the board of Host Hotels & Resorts and also co-founder, along with his wife Nancy, of the Richard E. & Nancy P. Marriott Foundation. Thank you for joining me today on All Inclusive. So I’d like to welcome Mr. Marriott, a friend of mine who I’ve known for many years. Dick, how are you and your family doing during this time?

Richard Marriott: These are unusual times, obviously. And we have a family Zoom meeting every week. Where all the grandkids and some of the great grandkids get on and tell us what’s going on in their lives. Quite frankly, we’re having a lot more communication now than we had before we were all sheltered in. If I get a few free minutes during the day, I can jump on my bicycle and I’ve been averaging about 20 miles a day because I live close to the C&O Canal, and I can go ride down on that, and ride endlessly. It’s beautiful.

‍Jay Ruderman: I know you’re a very active person. You’re a skier, you’re a biker, you tend to keep yourself in great physical activity.

‍Richard Marriott: Trying. There’s more time to do that when you’re sheltered at home. Being outside is good for you and not against the law here. So yeah, I’ve been doing as much of it as I can.

‍Jay Ruderman: And I know that you and I are both people of faith, I know that your faith is very important to you. What role has your faith played during this time of pandemic that most of us have not faced this type of reality in our lifetimes?

‍Richard Marriott: Because of our faith, we have more of a long-term outlook on things. This life is relatively short. If you assume that this is an eternal perspective, and after this life, wherever we’re gone, we’re going to be there forever. And so we want to do during this life, what will get us to a good spot in the next life. And that’s taking care of our friends, taking care of our family, being good citizens, doing what our Heavenly Father would like us to do. We’re thinking about the long-term, not what’s happening next week or next year, that keeps you focused on really working with other people, helping others, helping your family being a good citizen.

‍Jay Ruderman: Well, I’m glad to hear that you’re well. Your family is one of the preeminent names in the hospitality industry across the world. Can you tell me how this COVID-19 pandemic has impacted the hospitality industry?

‍Richard Marriott: Well, the impact on the hospitality industry has been unprecedented. We keep hearing that term, that few industries have been affected more than the hospitality industry between restaurants and the hotels. Our business is down up to 90%. That basically means we’re closed up. We’ve been in the hotel business for 63 years, and the restaurant business for 93 years. We’ve never closed the restaurant because of a recession. We’ve never closed the hotel because of a recession. But we have over half our hotels closed right now and almost all our restaurants closed. I mean, this has never happened before. And so it’s tough. I mean, we’ve furloughed 75% of our many thousands of employees. I am very confident we’re going to come back, we’ll come back strong, but it’s going to take a while to come back. People are not going to travel before they feel safe. And they’re not going to stay in our hotels until they feel safe. So they’ve got to travel, they’ve got to feel safe, and then they will start coming back to the hotels and the restaurants. And that’s going to take a while.

‍Jay Ruderman: I know that your employees are extremely important to your company. And when you talk about furloughs, I assume that when things bounce back, these employees will be back at work. But none of us have a crystal ball. None of us know exactly when things are going to bounce back, exactly when people are going to feel comfortable traveling, does the industry and does Marriott have the ability to maintain everything until things snap back or is there a point where certain properties no longer become tenable?

‍Richard Marriott: That depends on what happens to the small business people more than any. Marriott and my company, Host Hotels & Resorts are both very liquid, we’ve got a lot of cash and a lot of liquidity. We will make it through this. But a lot of small business people own courtyards and residence inns and small hotel units, and a lot of these folks are on the verge of going out of business. And if they do go out of business that will be tough on our industry and on the people. And so a lot of these folks will need federal help in order to stay alive and hopefully that some of these programs will provide that.

‍Richard Marriott: But it’s a very difficult time for the small business people. For the hotel business we’ll be back at full strength within the next three to four years. But it’s going to take that long to get back to where we were in 2019.

‍Jay Ruderman: In terms of the restaurant business, I mean, there’s some restaurant chains and they’re very powerful and there’s some small restaurants. How do you see the future of the restaurant industry?

‍Richard Marriott: Oh, I think the restaurant industry is great and will be great. People like to get out and eat and do things. There’s going to be a much more penance on to go and carry out and delivery. People are getting used to that right now and they’re liking it. But once we can get out of our houses, they want to mix with people. Hospitality industry is a people to people business. And people want to go out and talk to people and see people and see their friends and see the people in the restaurants. That’s never going to change. I mean, that’s been around for hundreds of years and it will continue on into the future. But it’s going to take a while till people feel safe. That’s the key.

‍Jay Ruderman: You’ve had a very interesting career path and a very successful career path. Can you talk a little bit about from a young man, starting out to where you are today, how your career developed.

‍Richard Marriott: Well, I grew up in the restaurant business. When I was a kid, Marriott Corporation was called Hot Shoppes Corporation. And all they had were full service family restaurants. And I grew up visiting those restaurants with my father, when I was a little kid and working in them when I was a teenager. And when I graduated from graduate school up in Boston, I came down to run a Hot Shoppe in Maryland. And so that’s a decision I never really made, I always have been in the restaurant business. And then I worked my way up to the restaurant, part of what was then Hot Shoppes Corporation then became Marriott Corporation, then Marriott International. At one time, I was responsible for over 1000 restaurants. So we were very big in the restaurant business. And that was the foundation for what is today, Marriott International. Anybody who owns a full service hotel will be doing probably a third of their total sales in their restaurants. And so we’re still very much in the restaurant business.

‍Jay Ruderman: And so how do you move from managing one particular restaurant to a 1000 restaurants or Marriott, from dozens of hotels to thousands of hotels across the world. Obviously, your company has been more successful than most companies in the history of the world. How is that happened?

‍Richard Marriott: Well, I can remember the day when Marriott passed the $1 billion sales mark and everybody said, “How are we ever going to grow past this? This is so big.” And of course today it’s multiple billions of dollars in sales. And the way you do that is you create a strong management structure with very sharp people. And I found in the restaurant, and in the hotel business, people that rise to the top are generally the people who started at the bottom and work their way on up. And I know in the restaurant business, I am on the board, I’ve been on the board of the National Restaurant Association for many years, and was its president one time, everybody on that board, we’re all millionaires now, all started in the dish room, or waiting on tables, and they worked their way up.

‍Richard Marriott: And when you get up to a management position, if you know what everybody down the line is supposed to be doing, and you get out and talk to them and see what they’re doing and find out how they’re feeling, you’ll be successful in the business. It’s a detail-oriented business, you got to pay attention to what’s going on in all the operations and have people around you that, you’re always trying to surround myself with people a lot smarter than I am, which is easy to do. So I’ve been very blessed with a lot of great people in management and they’ve made the growth possible.

‍Jay Ruderman: Well, I think you underestimate yourself. Having known you for many years, you’re a very humble person, but extremely well qualified. But I think the message is loud and clear. It’s all about people. And how do you find those people? Is it just a trial and error, people come in and they either sink or swim? They’re either proving themselves or they’re not? I mean, it sounds like that’s what the process has been.

‍Richard Marriott: We hired off a lot of people out of the hospitality schools. And we have been a big financial supporter of hospitality schools across the country. There are some really fabulous hospitality schools, who a lot of their students, when they graduate, they want to move right into the executive office suite. And we don’t look for those kind of people. We’re looking for people who will get involved in operations, who are willing to really be trained in every level of operations. In the hotels, we will run somebody who’s been through Harvard Business School or something through the housekeeping department, the restaurants and all that, make them wait on the tables, make them make beds, make them figure out how the operation works from the bottom up. It really pays off when they get to the point where they’re supervising tens of thousands of people, they have much more empathy for the managers down there on the front line. We’re very focused on taking care of our frontline managers.

‍Jay Ruderman: Another industry which has been really very much impacted by COVID-19 is the transportation, the airline business. And I know that it’s directly connected. You need people traveling in order to come to many of your hotels and resorts. How do you see that industry moving forward in the future and bouncing back in order to help your industry?

‍Richard Marriott: I think a lot of airlines are not going to survive this. But all the major airlines will, and some of these economy airlines and so forth, in Europe are already going out of business. It’s going to whittle it down to the strong, eventually, air travel will come back. It has to come back. And if it doesn’t come back, the hotel business won’t come back. Because we depend, over 50, 60% of our business arrives by airline. And if we can’t get the airline business, we won’t have the business traffic. Because all the business people travel by air. So it will come back. But I think there will be some losers. It will be a lot of the budget airlines and a lot of the smaller carriers. It depends on how long this COVID-19 thing lasts. Anybody who can last it out, will get started again, will come back. A lot of them just can’t wait till the end of it.

‍Jay Ruderman: I think you’ve referenced this before, that you think that the government will play a large role in terms of supporting the airlines, the major airlines will not be allowed to fail and will need some government intervention in order to maintain themselves.

‍Richard Marriott: The government needs to get unemployment down. And you can’t fill the job market and get these people back to work unless they have jobs. And you can’t get the jobs unless people can travel. And you can’t travel if you don’t have an airline. So the government sees the need for strong travel industry and they’re not going to let people go under. They can’t afford it. It will really do permanent damage to the economy if they do. And they know better.

‍Jay Ruderman: And do you feel that this is the same with hotels and resorts? That the government has a role to step in and make sure these industries also are viable?

‍Richard Marriott: Most of the large hotel companies are not going after federal support. People that are trying to get loans and direct support from the federal government are the small operators who just can’t, literally, can’t last through extended depression. Marriott isn’t seeking any of these stimulus programs and I know Hilton isn’t and I don’t think any of the major hotel companies are going after the federal stimulus. If it weren’t for their employees… Our concern is that we have thousands of employees who are furloughed, they need help. And we can’t help them all. For those, the federal government has a great program. And I think it’s helping.

‍Jay Ruderman: Is there a difference between your properties inside the United States and your international properties? And do you feel that international travel will be the last part of the travel industry to recover?

‍Richard Marriott: Well, my company is Host Hotels & Resorts. We have no properties outside of North America and a couple in Brazil. The long haul travel will be the last to come back. When you say, “What’s going to happen? Who’s going to start doing business and when?” Well, the drive-in traffic, hotels, where people can drive to, lots of hotels in Florida and Los Angeles and San Diego, who have large populations around that can survive on drive-in traffic, that will be the first. Leisure traffic will be next, the last segment to come back will be the group business. That’s the associations and the big meetings that are held where almost everybody comes through the airlines. It’s driving traffic will start. We’re seeing some fairly good occupancy in these small residence inns suites and so forth. But the big hotels in the metropolitan areas really depend on the travel industry.

‍Jay Ruderman: You mentioned that you were always destined to go into the hospitality industry. Was there ever another direction that you ever thought as a young man that, “Yeah, I’d like to pursue a different direction.” Or was that not something that occurred to you?

‍Richard Marriott: Well, I get asked that a lot. And as I mentioned earlier, I started, from a little kid working in restaurants and really stuck with it. My father questioned whether or not I really wanted to be in the restaurant industry because I love to work on cars, and I love mechanical things and I love to put things together. I took all these aptitude tests that said I should be a mechanical engineer. So my dad in his all-knowing wisdom said, “Well, I’ve got a job for you this summer.” And it was working for the Hot Shoppe group. They had a project to assemble bun toasters, curb service, where you’re making hundreds of hamburgers an hour. Every bun has to be toasted perfectly. And this was a machine that had a big grill, inclined grill and all these little weights and all this stuff that come down on the hamburger buns and slide them down the grill and they popped at the bottom, they were perfectly toasted.

‍Richard Marriott: Well this thing had hundreds of parts, lots of little electrical motors and chains. And he gave me the responsibility for assembling these bun toasters. So I worked for three solid months putting together these bun toasters. I had a ball, I just loved putting stuff together. And the next summer, he said, “Well, why don’t we put you with a mechanic and go out to the stores and start working on the dish machines and the conveyor belts and all the things we’ve got in the restaurants?” So I did that and I started getting familiar with the kitchens and the people in there and started really getting more interested in that.

‍Richard Marriott: Then the next summer, he said, “Well, do you want to work in the kitchen?” I said, “Sure.” So I went to work as a grill cook on the curb service side of The Silver Spring Hot Shoppe in Maryland. And I was cooking over 1000 hamburgers a night for the grill using the bun toaster among other things. And then by the time I got out of college, I was in management training programs. And by the time I got out of graduate school, I was going to be the general manager of a small full service restaurant, about a 300-seat restaurant. And from then on, I was in the restaurant business.

‍Jay Ruderman: So I know your family has been one of the most successful entrepreneurial families in American history. Your dad, was he a strict discipline guy or what was your relationship with him? He sounds like he was a loving father but also put you through the paces.

‍Richard Marriott: My dad was a perfectionist. I would go through the restaurants with him when I was a little kid and I would just be terrified. Because anything he found was wrong, the manager got a really dressing down. I mean, he would find any dirt, any temperature in any refrigerator was off, the mashed potatoes weren’t exactly the right temperature, he would just really give it to him. I found out, this is one of the reasons we were so successful. Because everybody loved my father because he really took good care of them. They all knew he was expecting perfection. And I guess when you expect perfection, if you strive for perfection, you’ll find excellence along the way and these Hot Shoppes were really well-run restaurants. So my dad was very demanding, he knew how to take care of people and they loved him in spite of how strict he was.

‍Jay Ruderman: But your family, in addition, your siblings, your extended family, I’ve met many of your family members, you all seem to get along pretty well. You all seem to be very humble people, very based in your religious upbringing and very committed to each other. Which I think is unusual in today’s world.

‍Richard Marriott: We have been blessed as a family to be able to spend a lot of time together. We have homes up in New Hampshire, where we have gone every summer. I’ve gone up there since I was four years old. 77 years, I’ve been going up there. And all our families have, all my children have homes up there. So all their cousins get together on a regular basis up there, they all love each other. And it’s been a tremendous thing for our family. We’ve tried to take family trips in the summer, we’ll go to Europe for a week or something. And we’ve always gone skiing for a week, every winter in either Colorado or Utah. We’ve done a lot of things together. It’s really paid off. All our cousins love each other, and they talk to each other constantly and we get together often.

‍Narrator: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive.

Jay Ruderman: Please remember to subscribe, rate and review us wherever you are listening. So how did the family move from the Hot Shoppes, from essentially restaurant business to the hotel business?

‍Richard Marriott: Well, the first hotel was opened in 1957 right at the entrance to Washington DC by what was called Twin Bridges. It was on the backlot of one of our restaurants, so Hot Shoppe Restaurants. And we got there because President Eisenhower had gotten the Interstate Highway System going and there was a lot more traffic coming into Washington. There were no high class motels at the time, and you had to go down and stay at the Mayflower or one of these fancy expensive hotels in DC. And so my father’s friend said, “Hey, why don’t you, you’ve got this fabulous location right at the entrance to Washington DC on the backside of your restaurant, why don’t you put a hotel up there?”

‍Richard Marriott: So he did. He built a 300 room seven-story hotel with swimming pools and ice cleaning ranks and ballrooms and barber shops and restaurants and everything else. It was probably the first full service, large scale motor hotel in the country. And it did extremely well. So then another couple of years he was building a hotel on Key Bridge right down the road from the first one. And that was the start of the hotel business for Marriott.

Jay Ruderman: I have a question about, after a successful career, we’re seeing the graduates of 2020. And they’re graduating in a weird time where there’s no real graduations, they’re virtual graduations. But many of them want to head off into the business world, and they’re facing a new reality. What have you learned along the way that you could depart to graduates who are pursuing careers in business? What tip would you give them on how to be successful?

‍Richard Marriott: I often do a lot of business and visits down to Brigham Young University, which is owned by The Church of Jesus Christ in Provo, Utah. And their motto is, Enter to learn, go forth to serve. So get all the education you can get, but when you get it, go out and try and help others. There’s an awful lot of things you can do to help others no matter what kind of economy you’ve got or anything else. And the more you help others, the more contacts you make, the better known you get and you’ll find yourself growing in your own business or whatever it is. People will have greater respect for you and you will be able to be more successful.

‍Richard Marriott: Something that my wife has taught me down through the years is that when we meet all these, what appear to be impossible challenges, she says there’s always a second door. For her, she calls up The Kennedy Center, and wants to get a seat down there for some opera or concert and they say, “Sir, we’re sold out.” Well, within a week, she has found a second door where those tickets magically appear. We all run into impossible obstacles that we think, “I can’t overcome this.” We find somebody that can help us do that.

‍Richard Marriott: My parents were trying to open their third restaurant, and they had two poor performing little tiny restaurants. One was an A&W root beer stand and another was a Hot Shoppe and they weren’t making enough money to pay the rent. This third one was the key. And this was on Georgia Avenue, right across from Walter Reed Army Hospital. It was a great location. And it was going to be the first drive-in restaurant in the United States, east of the Mississippi. And so my dad got the building permit for that building, which is a little box with just a small kitchen and a few seats in it. But when he asked for the curb cut, The Building Department said, “We have no code for a curb cut other than for a gas station. You can’t have it.” Now without the curb cut, this was not going to be a successful venture.

‍Richard Marriott: My father went to church the next Sunday and the guy running the church service was the honorable Reed Smoot. Reed Smoot just happened to be the chairman of Herbert Hoover’s Senate Finance Committee. Senate Finance Committee controls all the payments by the government to the Washington DC area. And my father mentioned to senator Smoot, he said, “I really can’t get a curb cut for this restaurant and my future depends on getting that cut and getting that restaurant open.” Senator Smoot evidently went to work, so within a week, my father got an enthusiastic approval of his curb cut and he opened his restaurant on schedule, it was a raving success. And it was really the foundation for the future of the Hot Shoppes and what is today Marriott.

‍Richard Marriott: We all have a second door that we can find. And one of the keys to being successful in business is find somebody who’s got the keys to that second door, whether it’s a mentor or whether it’s a training class, it’s all a combination of your creativity, your curiosity and your hard work, there’s always a second door, there’s always a way to get around those insurmountable obstacles. And that’s what we do with our Bridges program. The Bridges program is a second door for these young people with disabilities.

‍Jay Ruderman: You and I have talked in the past about the power of persistence, which is essentially what you’re talking about with second opportunities just to be persistent. In our world, we see a lot of persistence combined with elitism. What’s really impressed me about you and your family, with all your success, you are persistent, but you’re humble. And I’ve never seen you or any of your family members exhibit any elitism. Which is a truly remarkable, I think, thing in today’s modern world.

‍Richard Marriott: We are from humble beginnings. My father was a sheep herder. He would have never even gotten into college if he hadn’t have had a friend who was his seventh grade teacher who became the president of a local college in Weber, Utah and he led him into college after he had got home from his mission. He was 19 years old, he had no high school diploma, he had nothing to recommend him. This guy knew he was a hard worker and he got him in. He was his mentor. We all need mentors. We all, in all the world where we are today, not because we’re fabulous people, it is because we’ve had good people working with us and helping us along the way. We can’t do it on our own.

‍Jay Ruderman: I couldn’t agree more. You mentioned the Marriott Foundation for People with Disabilities and Bridges to Work, hugely successful program that’s helped thousands of young people across the country. I know that your family had a personal connection with disability, like many leaders in our society, whether they are people with disabilities or whether they have been connected through a sibling, a parent, or a child. But can you talk a little bit about why disability really meant something to your family and how you developed the Bridges to Work program?

‍Richard Marriott: Our Bridges to Work program started 30 years ago, back in 1989, actually, when we got together and decided we needed to focus on something that would be great for business and great for people. And we looked at our own hiring practices, down through the years in our restaurants, in our hotels, and we found that we have hired a great number of people with special needs or special abilities. But we also found that everybody has an ability, the key is finding out what their ability is, and what job they can excel in. Unless somebody is severely disabled where he can’t get around on his own, these people have a place that they can be successful in, in the hotel and the restaurant industry. And that was, really, the priority that we identified when we were founding Bridges.

‍Richard Marriott: And we’ve helped 25,000 kids get jobs with over five thousand companies. In this day and age, you look at the unemployment statistics and kids, 16 to 25 years old, are massively unemployed. And the kids with disabilities are even worse. 400,000 kids a year leave special education. 70% of them are unemployed and probably will never be employed. They don’t even figure into the unemployment statistics. We just feel that we are doing, not only a favor to the economy by getting people into jobs and off of Social Security Insurance and other welfare programs, but we’re massively helping these young people. We’re transforming their lives to the power of a job and there is no question, one of the greatest things for their well being, for their mental health and for their productivity is to have a job.

‍Jay Ruderman: I think working is hugely important not only for the paycheck, but also for finding a value and a purpose in your life. And the program has been an amazing success. Do you want to talk a little bit about how disability impacted your family and how it really played a role because I know there are other prominent families in America and around the world where they’ve really taken a leadership position on equality for people with disabilities because they’ve lived it. They’ve seen firsthand the injustices.

‍Richard Marriott: We have seen in our business, the success that people with disabilities can have. We had this young guy named Stanford who lived in Chicago, he was autistic, he loved trains. He would follow all the train schedules, he’d get out and he’d ride the trains and for years, that was his hobby. He just loved it. Then he got connected with the Bridges operation there. And his employer representative said, “Hey, maybe you’d like to get involved with trains and the Transportation Authority.” And he says, “Yeah, I really like that.” And so he called up the Transportation Authority and he got a job in a department that got on the phone and received calls from people who wanted to know how to get from The Loop to Evanston or from one street to another. And the person on the phone would look it up a little book and then give him instructions on what trains to take.

‍Richard Marriott: Well, Stanford, he didn’t need the book. He knew all the train stops. He was by far and away the most productive telephone operator they had in the transit system. And pretty soon he was a celebrity. And he got his front page picture on the Chicago Tribune, calling him the train man and just finding the niche, the place where he could shine.

‍Richard Marriott: And we’ve got this young man named Tim Acton in the Maryland hotels here. He has developmental disabilities. He applied for a job in the banquet department, they put him in the job as just putting up tables and doing stuff and then he started waiting on people during banquets, and all of a sudden they started getting requests from some of the groups that said, “Hey, we really like this young Tim. I mean, he is so personable, and we would love to have him work on our job.” Eventually, today, Tim is a captain in the banquet department, and he supervises several others. And on top of that, he is actually making financial contributions to Bridges.

‍Richard Marriott: I mean, that is the full circle. Go from being helped, to helping yourself. And Tim is just a fabulous young man. But we’ve just seen success and the impact it has on these people’s lives and on our business. So it’s been very rewarding.

‍Jay Ruderman: So how do you talk to other corporate leaders, who may not have seen the same success? Who may have not taken the chance and had the experience. How do you talk to them and say, “Listen, people with disabilities are an untapped resource in our country. They have the ability,” especially now where most of us are working from home, if we are working, and there’s no difference between the CEO and anyone else in terms of being able to be productive from home. How do you talk to those people that just don’t get it yet and don’t understand the value of employing people with disabilities?

‍Richard Marriott: The Bridges group is working with over 5000 different companies throughout the United States. And the primary objective of Bridges is to educate the employer about the feasibility of using people with disabilities. And the fact that they don’t need all kinds of special needs and everything else on the workforce, that they can truly make a contribution. It’s a win-win proposition for the companies and for the young men and women that they’re hiring.

‍Richard Marriott: And then the way that they really get sold on it, is they hire their first Bridges student. And 35% of all the companies that hire their first Bridges student, hire more Bridges students because they find out how great they are. They show up, they’re positive, they have a great impact on morale. Everybody loves to be with them and be around them. They just really shine. And so it’s hard to completely convince these people until they hire their first Bridges student and then they see. And it’s been a wonderful experience.

Jay Ruderman: Do you think that there’s any role on a macro? Because the gross injustice of… I mean, before COVID-19 hit, the unemployment rate was trending below 4% in the United States, but you have for people with disabilities, it was over 70% and that just seems grossly unfair and unjust in a modern society. Is there any role for government in order to prod industry to employ more people with disabilities?

‍Richard Marriott: Well, I was under the impression that the government had actually put in some guidelines for all government contractors that they had to hire a certain percentage of their employees, people who have disabilities. I’m not sure. I am personally not in favor of having the government start telling me how to run my business and who I have to hire. Operations like Bridges, I think you have a wonderful foundation that works with the awareness about hiring people with disabilities. I mean, we’ve just got to get out and the proof is doing it. And they see how effective these young people are. We just have to keep focusing on the job. There are a lot of people who are out there training and giving them all kinds of skills and everything else but they don’t find them jobs. Bridges is completely focused on preparing these young people to apply for a job, they’ll find a job for them, go with them to the interview, get them employed. Once they’re employed, they do just fine. The whole thing is overcoming the employment process, which is very complicated in this high technology age.

‍Jay Ruderman: I mean, my personal experience based on our involvement with Bridges, and also a program that we established in Boston called Transition to Work is not only are people with disabilities, great employees, but they also tend to boost the morale of the companies in which they’re working and have a tremendous impact. And I think people who have hired people with disabilities and really made it a priority have really seen the payoff. I also think, we’re at a time now where working remotely, because transportation is often an issue with hiring people with disabilities, but there’s so much work that could be done remotely that a person with or without a disability can do. I think that there’s a silver lining, in terms of employment that may come out of this whole crisis that we may see in the future.

‍Jay Ruderman: Let me ask you, when you have some time off, I know you’re an avid skier, I know you spend a lot of time skiing in a beautiful part of the world. What else do you like to do in terms of leisure time sports and so forth, especially during this time when a lot of us are locked away?‍

Richard Marriott: When I was growing up, from the time I was 20 to 50 or 60, I did a lot of raced motocross, motorcycle racing. I played racquetball, I was a very competitive racquetball player, tennis player, golfer, and did a lot of biking and skiing. Now, in my later years, I’m now over 80 years old, I’m down to biking and skiing. My back is probably in bad condition because of all the other things that I did for so long but I can still bike and I can still ski. And I do as much of that as I possibly can. In this COVID-19 shelter in situation has basically left me with biking and I do as much of that as I can. But I spent a lot of time with my family, a lot of time with my kids. And now with the Zoom meetings and all these conference calls, I am having a lot of FaceTime with my children, my grandchildren and even my great grandchildren. So making the most of it. But I’m anxious to get back to work where I can actually go into the office and see people.

‍Jay Ruderman: I’m sure all of us would like to return to normal as soon as possible. Let me ask you, when you were growing up, was there one particular person that you looked up to and was a role model for you?

‍Richard Marriott: Well, of course, the obvious answer to that is my father. Accompanying him on visits to restaurants, to church meetings, he was a leader in the church. He was a leader in the community. He did it all. And I saw the tremendous respect people had for him, and I saw how he expected people to do their best. And anybody who wants to be a success in life has to be able to work with people so that they can perform at their maximum ability. And he could do that.

‍Richard Marriott: Another person I really always admired was president Eisenhower. I’ve been reading a lot of World War II books and a lot of them are about Eisenhower and he was a master at working together with very difficult people. In World War II he had two guys, Charles de Gaulle, and Bernard Montgomery. Montgomery headed up the British forces, de Gaulle headed up the French forces, and they were very difficult to get along with. And they both wanted to do everything their own way and didn’t want to listen to anybody, especially some American, tell them what to do. But he really formed a great coalition with these guys. And as a result, he accomplished one of the greatest military victories in history.

‍Richard Marriott: So it’s about how you deal with people. And the people that I respect the most are the people that I see how they can relate to people, how they can get the best performance out of people, and how they can get the love and respect of their fellow men.

‍Jay Ruderman: Well, thank you Dick. It was a pleasure speaking to you, I wish you, you and your family stay safe and healthy. And God bless you. And thank you for all that you’ve done for our country, especially people with disabilities and the role that you’ve really played as a leader in the corporate world on moving that issue forward. So I hope you stay well and I hope to see you soon.‍

Richard Marriott: Thank you, Jay. Listen, we appreciate all that you do to help folks with disabilities and create the awareness of the need that we have here. I mean, it’s unconscionable, we have 35 to 50 million young people and middle-aged people with disabilities who are unemployed. And we don’t even count them in the statistics. They’re just out lost in space. They really need to be helped out. So thank you for all you do.

‍Jay Ruderman: Thank you. God bless.

‍Narrator: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman.

Jay Ruderman: Curb Your Enthusiasm is one of the great comedies on television right now. The shows stars, Larry David as himself, and has an accompanying cast that is excellent.

Narrator: All Inclusive, a podcast on inclusion, innovation and social justice, with Jay Ruderman.

‍Jay: Hi, I’m Jay Ruderman and this is All Inclusive. One of those excellent co-stars on Curb Your Enthusiasm is Emmy nominated actress, Cheryl Hines, who joined us today. Cheryl, thanks so much for joining us today and I hope you and your family are doing well at this time. We’re really proud to have you as our guest. We are living in the time of the surge of COVID-19. I’m here in Massachusetts and we really are in the surge. I just wanted to understand how you and your family are dealing with this time of social isolation and quarantine and how are things at home.

‍Cheryl Hines: Hi, it’s good to be here. How are things at home. Things at home are pretty good. So far, I don’t want to jinx it, but everybody’s hanging in there and they’re pretty, dare I say respectful of each other at our house. We have a lot of people here, we have probably seven, maybe. I have a lot of kids, so we’re all hunkered down together. So far so good. I’ve done a lot of online games with my friends and I think that’s what’s keeping me sane. A lot of Zoom calls.

‍Jay: I’m also living in a house with seven adults and three dogs and thank God we have the space. I have teenagers, so it’s a whole different phase. Sometimes they’re really happy and sometimes they’re not so happy. Let me ask you, in terms of your industry, as an actress in the entertainment industry, has everything just been frozen right now in terms of filming? I noticed that a lot of shows that are live shows are now being done remotely, but are there time to read scripts? How do you take best use of this time that you have?

‍Cheryl: Well, yes, it’s a good time to read scripts and it does seem like everything is frozen. It’s starting to feel like things are lifting a little bit, that there seems to be light at the end of the tunnel. I know a lot of executives as well as the union, like SAG and AFTRA, they’re all trying to figure out how to move forward because we can’t just say stuck in time. So people are trying to come up with good plans of how we can get back to work. And I think it’s going to look different when we do go back to work. I don’t imagine there will be shows with big audiences for a while. So I think people are trying to sort of reinvent TV and film, I think for the next chapter.

‍Jay: It seems like the entertainment industry is a lot about being out and about and connecting and having the right meetings and socializing. And now that that is not going on so much, how do you keep those connections going?

‍Cheryl: You know it’s interesting, one of my friends is a producer and we were playing poker online and she was saying that they had a table read for a film that she’s trying to put together and they didn’t know what to expect because they thought it might just be a dud, like fizzle out, not the right vibe. But she said it was one of the best table reads she’s ever been to, because it was on Zoom. And usually when we do a table read, the actors sit at a long table and then producers, writers, network executives, or studio executives, they’re all sitting around watching. But she said on Zoom, the way it’s set up that people can hide their video, so they can mute themselves and hide themselves. So you can watch and hear everything that’s going on, but people can’t see you.

‍Cheryl: So the only people that were seeing were the actors that were doing the table read and she said it was amazing. She felt like she was watching the film because we’re doing it, you’re sitting there and you see closeups of everybody’s faces. And she said it was just sort of a magical experience. And she said it might change the way people do table reads because also you didn’t have to fly in actors from around the country or around the world, everybody could be there. And it was just a very sort of intimate way of doing it. So things are changing, sometimes for the best.

‍Jay: You and I met right before this pandemic really broke out. We did an event honoring Peter and Bobby Farrelly in Beverly Hills for their work for inclusion of people with disabilities in their films. And it was great event and I got to meet you and Ted Danson and Larry David. And it was probably one of the last events that was held before everything sort of closed down. You’ve had a tremendous amount of success in your career with Curb Your Enthusiasm and obviously you’ve been very connected to the show and to Larry David, but you’ve done many other things in your career. Have you moved away from being an integral part of that show and connected to Larry to really developing a very substantial career on your own?

‍Cheryl: It’s a good question because when Curb Your Enthusiasm first came out, because of the style of the show, it’s all improvised and it was supposed to look like a documentary. So it was sort of a mockumentary if you will, because Larry David is playing a version of himself and you had, and still do have Richard Lewis playing a version of himself and Ted Danson too. You have all these people that you know. And when I was cast, one of the reasons I got the job was because I was an unknown actress. So they wanted somebody everybody didn’t know so people would think, “Oh, maybe that’s actually Larry David’s wife.” Because everybody else is a real person.

‍Cheryl: So when Curb came out, people thought I was really married to Larry. So, I went to an audition and the casting director said, “Oh, you’re an actress too?” “Uh, what do you mean?” So she thought it was a reality show. I hired a publicist then to sort of separate myself from the show so people would know I’m not really Larry David’s wife and I’m an actress and it was helpful. So after that, I started getting auditions and offers as an actress instead of as Larry David’s wife.

‍Jay: So you were born in Miami and grew up in Tallahassee, when you first started getting into acting, tell us how that happened. How did you get the bug and how did you begin your acting career?

‍Cheryl: Well, it’s interesting because I can only remember wanting to be an actor. When I was little, I would write sketches with my sister and my brothers and then we’d have a show in the living room for my parents. They weren’t great shows, let’s be honest, but I mean, looking back I realize, “Oh, that’s not normal.” I mean, not every kid is writing comedy sketches when they’re eight. So that was just sort of my life growing up. And then when I was in high school, I really started taking acting seriously. And because I did grow up in Tallahassee, I got to work with some of the actors at Florida State University. So that was exciting for me and I think it really got me thinking in a more serious way about acting in a more focused way of, “Oh, I need to be disciplined about this. And I have to really approach it in a more mature way.”

‍Cheryl: So from there, I studied it in college and then at some point I just drove my Toyota Tercel from Orlando to Los Angeles. And then from there I found out about the Groundlings Theater in LA, which is all improv and sketch comedy. And I went there and I really found my home and my people, and I learned so much there. From there, I got Curb Your Enthusiasm, which is all improvised.

‍Jay: So there are thousands and thousands of actors, people from all over the country that descend on LA and try to make it. And most of them don’t make it. What do you attribute your success to? My dad used to say, first of all, 90% of life is showing up, but 25% is hard work and 75% is luck. What’s your theory on how it happened for you?

‍Cheryl: Well, I like the idea of preparedness meeting opportunity. So for me, I feel like I had spent years and years and years studying and learning. I wrote a play when I was in my twenties and I produced that and I kept writing when of course nobody’s asking me to write anything. I kept auditioning for student films. Every day I was working really hard even though nobody at all cared. But it helped me to prepare for the moment when somebody did care, when somebody did call me in for an audition, I was ready. Because I’d spent my whole life waiting for that moment in time where I could go in and actually try in front of somebody who was a decision maker or had the power to hire me for something.

‍Jay: In some ways you have to be a very strong person to deal with a lot of rejection and maybe a couple of acceptances. Mental health, anxiety, depression is so prevalent in our society and I think very prevalent in the entertainment industry. How do you deal with that? How do you push yourself forward when there’s rejection all the time?

‍Cheryl: When I was in Orlando, before I moved to LA, there was only one show that was being shot there and it was Swamp Thing, the TV show. I was dying to be on it because that was the one show. I auditioned once and I didn’t get the part. I auditioned the second time and I did not get a part. And they called me in the third time for Swamp Thing. And I’m really working on these auditions, I’m prepared, I’ve studied, I’ve done all the things that I’m supposed to do. I go in and I didn’t get the part and I really got depressed. And I talked to my sister, and I said, “Maybe I shouldn’t be in this business. Maybe I’m not good at it. And I don’t know, maybe I should just quit.” And she said, “Yeah, you should.” I said. “What?” She said, “Well, if this rejection from Swamp Thing is getting you down this much, you need to get out.” She said, “You picked a profession where it’s mostly rejection. You’re going to go through your whole life feeling badly about yourself if this is how you’re treating your Swamp Thing rejection.”

‍Cheryl: I thought about it and it made a lot of sense to me. And it really made me step back and think about the idea of rejection and auditioning and not getting the part. I really thought about it in a completely different way, whereas it doesn’t matter if you get the part or not. The success is that you got the audition and you got to go in and you got to do your best, and that should be your definition of success. Otherwise, if you’re waiting to be happy until you get cast in that thing, you might not ever be happy because like you’re saying, there’s a big component of luck that has to be there for you to get something.

‍Cheryl: So I’ve taken time to think about my self worth, if you will. That has nothing to do with, if I get a job as an actress or not. But then that being said, the fourth time I went in to audition for Swamp Thing, I got it.

‍Jay: Congratulations.

‍Cheryl:Thank you.

‍Jay: And so talk a little bit about the industry that you’re in, being a woman and the barriers that sometimes women have to face in the industry and especially, as people progress in their career, the ways that the industry may view them. And what are your opinions on that? And how do you handle that? How do you take a leadership role in that?

‍Cheryl: Well, I have a few schools of thought. It’s interesting because for me personally, I haven’t felt that barrier between women and not being able to move to the next level. And maybe because I started at the Groundlings and it’s very, I don’t know, guy/girl doesn’t matter as long as you’re funny or talented, it doesn’t really matter. But then when I started doing other things like producing, directing, then it did become more clearer to me, “Oh, it’s unusual for a woman to direct a film.” But I had never thought about it before until people started asking me like, “Wow, you are lady director. How does that feel?” “Oh, yeah, I guess I’m a lady and a director, probably feels like a guy director. But I don’t know.”

‍Cheryl: It’s interesting especially when I work with my husband and we’re trying to figure out a film or a TV show to watch, that’s when it becomes very clear to me. “Oh, it is very male dominated.” Because I don’t connect that strongly to a film that is all men and then maybe one lady that’s the nurse. I don’t really need to watch another where it’s just a bunch of guys killing each other. I don’t respond to that. And just the same as he probably doesn’t want to watch a movie that’s 99% women and one guy who comes in and brings chocolate and flowers to the girls.

‍Cheryl: But that being said, it’s mostly guys in movies. And when I was putting together this project of a film that I wrote and we were getting money, trying to raise the money for it. And there was one organization who said, “Yes, we will contribute to this as long as you can guarantee that at least 50% of the cast will be at least women and or minorities.” And I thought, “That is a weird… Of course it’s going to be 50% of the cast.” Then I realized, “Oh, that’s just me. And that’s not normal.” I mean, you watch things and it’s not usually a 50/50 mix. So, it’s a learning process.

‍Jay: I think that the entertainment industry has had a lot of stigma and you’ve seen other minority groups that have been discriminated against for decades and are now sort of making progress. The African American community, Hispanic community, Asian community have really come to the forefront. I mean, they’re not, I would say completely in positions of power, but their power is growing. I think also with women in film and you’ve not only acted, but you’ve directed. And I’m wondering if you could talk about how does it feel being an actress as opposed to directing something? And which one do you enjoy more?

‍Cheryl: Well, yes, they are completely different art forms. Although I hate to use that word because Larry David would be like, “Oh God, art forms.” But acting, there’s an ease to it. And maybe because I’ve been doing it for so long, I don’t know, I find it very, it’s just my job. But as a director, I just directed an episode of Curb Your Enthusiasm this season, so that was fun. And I’ve directed a few television projects and also an independent feature film a while ago. And directing is definitely more challenging for me. I mean, you’re the first one on the set and you’re the last one to leave and you have to know exactly what’s going on and you have to anticipate what’s going to happen in the next hour and the next two hours, tomorrow morning, what happens if it rains? What happens if one of the actors is late? What happens if, there a lot of what ifs that you have to think about as director and it’s very stressful. Does that answer the question?

‍Jay: Sure. So it sounds like you enjoy both being an actor and directing, but they’re very different art forms.

‍Cheryl: Yes.

‍Jay: And you’ve talked a lot about this in different forms, but you are a trained actress. You’re used to learning lines and knowing what you have to say and when you have to say it. How was it to adapt to playing on Curb Your Enthusiasm where there are no lines and everything is improvised?

‍Cheryl: Well, that was very easy for me only because I had just spent so many years at the Groundlings Theater doing improv in front of a live audience, which is terrifying. But it’s about listening to your scene partner and responding. So that’s what we do on Curb. You’re just listening and you can’t respond until you hear what the other person says. And then if you have a genuine response to it, then you’re doing the right thing.

‍Cheryl: So it’s actually easier for me on Curb Your Enthusiasm, because I’ve never felt a responsibility to try to be funny. I’m pretty much the straight man on Curb, which is great. Whereas like I said, when you’re doing improv in front of a live audience and they say, “Oh, where are these two people?” “They’re at Starbucks.” “Okay, go.” And then now you’re doing a scene from scratch and you have to label who you are, who your scene partner is, what’s going on, what the problem is, how are you going to solve it? And you have to do it all in two and a half minutes. So for me it was an easy transition.

‍Jay: So I only met Larry once. And it was when we did this honoring of the Farrelly brothers. And he seemed like a very genuine person, a little bit prickly, but he’s probably exactly as he is in real life as he is on the show. That’s my guess. But you probably have years of experience of knowing this.

‍Cheryl: Larry is, as you can imagine, a very smart person. And he’s so great because he knows what’s funny about himself. He knows that because he hates social rules, he knows that that’s funny to other people, although in real life he hates social rules. So it’s pretty great that he can harness it basically and do it on the show. In real life, he wouldn’t actually cross some of the lines he crosses on Curb, but he also says, that’s why he does it, that’s why he does the show. So he can because that’s how he would like to act.

‍Jay: I remember when I went to shake his hand, he’s like, “I haven’t shaken a hand in six weeks and I’m not going to start right now.” So that was my introduction to Larry David.

‍Cheryl: Yeah. But that’s what I like about him. He’ll be very honest with you. “Do you want to have lunch?” “No.” “Oh, okay. Well then I will talk to you later.” “Yeah. Or not.”

‍Jay: Let me ask you, if you hadn’t gone into acting, what do you think you’d be doing right now?

‍Cheryl: I think I would be a psychologist.

‍Jay: Interesting.

‍Cheryl: Yeah. I am very interested at people and how they approach things in life. And I think I might be helpful at listening.

‍Jay: And what advice would you give to young actors who are trying to make it into the business?

‍Cheryl: Well, like we talked about before, I think you have to find other ways to be happy in your life. I think you have to recognize your happiness when it comes. So you’re not sitting around thinking, “Oh, when I get that TV show I’ll be happy. When I get that movie I’ll be happy.” Find your little victories along the way and really celebrate them. I was just interviewing J.B. Smoove who’s on Curb Your Enthusiasm and he’s just great. He’s very smart. And he said, “Don’t let somebody else set the bar. You set the bar and then do pull ups on it.” I like that because as an actor, nobody’s going to knock on your door and say, “Hey, I heard you’re great.” They’re just not, it just doesn’t work like that.

‍Cheryl: But now we’re in a time of social media and everybody’s got a phone and everybody’s got a camera. So be creative, create projects that you like, that you think are good and you think are extraordinary and then put it out to the world and see if they respond. But you can’t sit around hoping that somebody’s going to discover you.

‍Narrator: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive.

Jay: Please remember to subscribe, rate and review us wherever you are listening.

‍Jay: So is this your new form of improv by doing sort of improv on social media? And do you still do improv?

‍Cheryl: Well, I just started a Zoom talk show called Shooting The Shit with Cheryl. That’s really fun. And yeah, I mean, I guess in a way it’s all improvised because I’m talking to people and hearing, “Oh, see, this is my life, it’s coming together.” I’m using my improv skills and my psychology skills because I like to listen to people. I like to hear their stories. I like to hear where they’re from and how they got there and what they’re doing. So yes, I’m using my improv skills there.

‍Cheryl: But I think everybody could use improv skills in life because one of the biggest rules about improv is to say yes, and. So when someone says something to you, you say yes, and then you add information. So you’re not saying no to people. You’re not saying, “I don’t like that idea. I didn’t just hear what you said. No, thank you.” You’re saying yes to everything and I think it’s a really good positive attitude to have, so yes, and. And eye contact is another, although it’s hard in our social isolation, but reading other people and really taking them in, I think is, I don’t know, it’s a great way to go through life, to listen, make eye contact and say yes.

‍Jay: And how do you deal with social media when it gets nasty? What’s your technique of dealing with that?

‍Cheryl: I usually ignore it. Sometimes you can’t ignore it. And then when you can’t, maybe you shut it off for a while. But once in a while I’ll respond. Somebody said something about my veneers being too big, my fake teeth. And I said, “Oh, I don’t have veneers, but thank you for taking the time to write that comment.” You can’t worry about it too much or you’ll go crazy.

‍Jay: Right. And I noticed that some actors are very active on social media and some of them choose not to be involved at all. So I guess it’s a personal choice in how you take it. Some people, I guess really take it to heart and it bothers them. They’re very sensitive. And some people are able to sort of just blow it off and turn it off.

Cheryl: Yeah. For me, I have been, maybe from being in this business, but it’s been years of, like I said, rejection, “Oh, she’s too old. She’s too young. She’s too bad. She’s too skinny.” She’s too this, she’s too that, whatever it is. So I think as long as you know who you are, other people can’t define you. So if somebody says, “Oh, your veneers are too big.” Well, like I said, I don’t have veneers. And even if I did and I chose them to be this big, then I don’t care what Joe in Kansas is saying, it’s fine. They’re working out for me. Don’t worry about it.

‍Jay: Right. It sounds like you have a very strong inner confidence and that’s been with you for a long time and maybe your family is a very strong basis that you can sort of turn to. I know that you do have a very strong family and that there are probably many people in the industry that don’t have that and probably lack that stability.

‍Cheryl: You’re right. I do have a strong connection to my family. And if you don’t have a strong connection to your family, and not everybody does, it’s important to have core group of people that will always be honest with you. Even if it’s just one person, you have to have somebody who will say, “Hey, reel it in, dial it down.” Either you’re not that great or you’re so much better than this, you need one honest person in your corner.

‍Jay: So America is a very diverse place. And I think that we’ve seen groups that have been ostracized from the entertainment industry. And as we talked about before, have made great strides, although they’re not quite there. The disability community has been really ostracized. In fact, I think that there’s this feeling in the entertainment industry, that great acting is playing disability. And in fact, in the last three decades, half the men that have won the best actor Oscar have won for playing a disability. And our foundation came up with a study that said that 95% of the characters that you see on TV playing a disability, don’t have that disability.

‍Jay: So that was part of why we’ve honored the Farrelly brothers because they’ve done, in their movies, a great job at giving roles for people with disabilities. And thank you for coming to that event. And thank you for signing our foundation’s letter urging studios to audition actors with disabilities. I know you have a personal connection with disability. It seems like entertainment should reflect, even though it’s entertainment, but the more that it reflects reality, I think the more impact it has on society in reducing stigma. You obviously chose to come to the event and you chose to sign the letter, what are your feelings about disability in terms of being behind and in front of the camera?

‍Cheryl: Well, you’re right. So I have a nephew who has cerebral palsy and he’s been in a wheelchair his whole life and his speech is not great, but I can understand every word. So I think there’s an interesting thing that goes on with people, especially that involves speech, some sort of disability that might impact your speech, the people around them can hear every word and understand it perfectly. And then somebody new comes in and it sounds like, “Oh, I can’t possibly hear what this person’s saying.”

‍Cheryl: But I think it’s very important for the industry to hire people with disabilities because it’s an authentic way to really see who other people are. So someone with a disability like cerebral palsy, if you hire somebody who has cerebral palsy like RJ Mitte in Breaking Bad. Here you have a great actor who’s playing somebody who has cerebral palsy who has cerebral palsy. So it’s a very authentic look at it and it’s not somebody’s interpretation of it, it’s just an actor playing a role.

‍Cheryl: Like with Shoshannah Stern in This Close, I was on that show and Shoshannah has a hearing disability and everybody on, not everybody, but most of the people, when I was there anyway, around me had different levels of, I don’t want to even say capability of hearing, oh, well, I will, I’ll say that because almost everybody on the set was signing using sign language. So it was interesting because I was the minority. So I was the one that didn’t know sign language, and they could all communicate beautifully and perfectly and telling jokes and I was the one left out because I didn’t know the language. But it was a great show because it’s about two people that can’t hear and you can see their point of view of the world and also how people perceive them.

‍Cheryl: So instead of people trying to imagine how that might look or feel or sound, you have people who can tell you exactly how it looks and feels and sounds. Same with Cole Sibus on Stumptown. So I did an episode of Stumptown and I just fell in love with Cole. Because here is an actor who has a disability, who’s doing an amazing job in his role, and he’s doing it better than somebody who would be acting like he had a disability. It’s just an authentic look at life and at people and who they are and how they perceive the world and how the world perceives them. It elevates a project to a very authentic place.

‍Jay: Right. And disability is such a large part of our society. 20% of our population has some form of a disability. And we’ve seen real leadership among people like Scott Silveri, who had a show on ABC called Speechless with Minnie Driver. And he went out and he looked for Micah Fowler who played one of the lead characters and someone who has a disability or Edgar Wright who produced, among his films, Baby Driver, and auditioned a lot of characters for the film, of Baby’s father, and then found CJ Jones who’s deaf and said the character was going to be deaf. Even John Krasinski, in A Quiet Place, wanted his daughter to be deaf and found Millicent Simmonds. So I think when you find that leadership, you have inclusion.

‍Jay: Your husband’s cousin, Tim Shriver wrote a book called Fully Alive, I don’t know if you’ve read it, but sort of goes through the history of disability in our country, how people were institutionalized and segregated. And it was actually Tim’s mother, Eunice Shriver who really began Special Olympics and really started bringing people with disabilities out of institutions and into the public view.

‍Jay: And our foundation recently did a study that we released to the studios. It was a survey saying the people really want authenticity and they’re willing to pay for authenticity. But this stigma that permeates our society about disability, I think also exists in the entertainment industry. And there’s some people that are saying, “Well, if you really want to have a character with disability played correctly, don’t hire a person with disability, hire an abled bodied actor to play that disability.”

‍Jay: So I think we’re in a transition period, but the more leaders like you and others that really say, “No, I think that people with disabilities have the right to be seen and to be heard.” The more that happens, the more stigma in our society will be reduced.

‍Cheryl: You’re absolutely right. And I think even ABC, Dancing with the Stars, I think they’ve done a very good job introducing the masses to someone who only has one leg, who’s an amazing dancer, somebody who can’t hear, who’s an amazing dancer. And it’s been fun to watch how much people around the world, around the country connect with that person. Most people haven’t had the opportunity to watch somebody who only has one leg, dance or who’s deaf, dance.

‍Cheryl: So I think it’s a good indicator to the industry that people connect with this and people want to understand it, want to see it, want to explore it. Clearly if so many actors have been winning awards for their portrayal of someone with a disability, there’s an audience out there who wants to see the story of this person with a disability. So what better way to do it than somebody with that disability. I think you’re right, I think we’re ready for it. We want to see it.

‍Jay: Yeah. Thank you. So let me just ask you some offhand questions. Are there any actors who you’ve not worked with yet that you were really dying to work with?

‍Cheryl: I mean, I should have an answer for this shouldn’t I? I don’t know, I’ve been so lucky with the people that I’ve worked with. It would be fun to do something with Glenn Close, like a thriller. A thriller with Glenn Close. Write it up you guys.

‍Jay: Yeah. I saw her in a film at Sundance with Mila Kunis. That was quite a film and I think will do fairly well. Let me ask you, your poker playing, where does that come from? And how long have you been a poker player? And is this online poker? Will you go to a casino when casinos actually become a thing again?

‍Cheryl: Well, I started playing when I was pregnant 16 years ago, because I was so bored and I was stuck at home and I started playing online and then I started playing with friends. We have trips to Vegas and stuff like that, but I have a home game. We haven’t played since the lockdown, but I have a home game with Ray Romano and Jason Alexander and Camryn Manheim, a bunch of people. And every month we go and we play till one in the morning if you’re one of the winners. During the lockdown, I’ve been playing online with my friends. Somehow somebody set it up where we’re on Zoom and we’re also playing on another device. So it’s complicated, but worth it.

‍Jay: Do you have a good poker face?

‍Cheryl: I have a great poker face. You know what I like about poker, it’s the one time that you not only should you lie, but you have to, you have to look somebody in the eye and lie to them and it’s perfectly acceptable. And I like that.

‍Jay: Interesting. Have you ever thought of joining one of these poker tournaments in Vegas that you see on TV?

‍Cheryl: Well, I have. I played the Women’s World Series of Poker. I have done a few TV poker games. One time I won. I seem to do a lot of charity poker tournaments, which is fun. I just did one for Feeding America that Ben Affleck coordinated. That was really good.

‍Jay: Are there any upcoming projects that we should be looking out for, that you’ve been involved with that you really liked and you’re excited about coming out? If you can divulge them at this time, if they’re not…

‍Cheryl: That’s what’s interesting. I don’t know if they’ve announced it yet, so I don’t think I can announce, but we shot one episode of this crazy fun show.

‍Jay: That’s as much as you can say right now.

‍Cheryl: So since they haven’t announced, I probably shouldn’t, but we did one episode the day before everything locked down. So hopefully we’re going to go back and finish shooting and then they’ll tell you all about it then.

‍Jay: All right. Well learn about it. Let me just ask you final question. Are there any shows or movies that you really like that have really caught your attention? Other than shows that you’re in.

‍Cheryl: It’d be so weird if only listed shows. Well, I really love Killing Eve, really enjoying Killing Eve. We just watched Waco, terribly sad, but interesting look on history. You know the meme, “I’ve just finished Netflix.” I kind of feel like that. I feel like I just watched everything, so now what?

‍Jay: Do you like watching yourself on TV and the movies? Or is it something that if you see something comes up, do you turn the channel or do you watch it?

‍Cheryl: Oh, no, I definitely don’t watch it. I don’t necessarily like watching myself, but like I said, I’ve been so fortunate to work with amazing people that I want to watch Curb, because I want to see what Larry and J.B. and Susie and Jeff are doing because I don’t get to see it unless it’s in the scene that I’m in. So I will watch it. I have to be in the mood. My husband will want to watch it all the time and I’m like, “I can’t tonight.”

‍Cheryl: The same with Bad Moms Christmas. I got to work with Susan Sarandon and Kristen bell. I had so much fun with them that I wouldn’t watch it by myself. But if my stepdaughter hasn’t seen it, she needs to see it, I would sit down and watch it with her with half an eye. It is weird see yourself.

‍Jay: I’m sure. Cheryl, I really appreciate your time and thank you for joining us and thanks for your leadership and being an awesome actor who I enjoy watching. Thank you so much and stay safe and stay healthy. And I hope your family stays safe and healthy throughout this whole pandemic. And we’ll see you on the other side.

‍Cheryl: Yes. Well thank you for all the work you’re doing. It’s really important, it makes such a difference in so many people’s lives. And it’s not easy work that you’re doing. I know this to be true, so I appreciate your hard work and keep it up and hope pays off and yes, you stay safe and sane.

‍Jay: Thank you so much.

‍Cheryl: Bye.

‍Narrator: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society, you can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.

Jay Ruderman: I hope you’re all doing well during this trying time around the world. For die hard sports fans and the casual fan alike, sports can be a nice distraction from everyday life. For fans of Major League Baseball, the current situation has meant a longer hot stove season than we would like, but hopefully the Boys of Summer will be playing soon again.

‍Narrator: All Inclusive, a podcast on inclusion, innovation, and social justice with Jay Ruderman.

‍Jay: Hi, I’m Jay Ruderman, host of All Inclusive, and today we have the executive director of the Boston Red Sox Foundation, Bekah Salwasser, as our guest. Bekah, thank you for joining us and hope you and your family are doing well at this time. I just want you to tell us a little bit about your background and where you grew up and how you ended up where you are right now.

‍Bekah: Sure. I grew up in Cambridge, Massachusetts, and I grew up in a very busy, chaotic, diverse family. I’m one of five children in a multiethnic racial family. My mom’s family is from Barbados, my dad’s family’s from Ireland, and so we grew up with a lot of different culture, a lot of different food, a lot of different music, and a lot of different people in our house all the time, which I look back and think of as a blessing just given the exposure I had to difference and diversity. I think that helped shape a little bit about my personal goals and personal missions which came to grow out of that experience of being part of an upbringing that was rooted in diversity.

‍Bekah: My mom and dad worked in Boston public school system for several decades each and recognize the need for good education. They worked, oftentimes, two and three jobs apiece to ensure that all five of us had access to the best education possible. For me, my pathway was through a private school in Cambridge called Buckingham Browne & Nichols. I was a lifer there from kindergarten through 12th grade. I look back at that time there as one where I was exposed to, again, a lot of diversity. Having grown up in a family with a lot of racial and ethnic diversity, again, we came from a background of low socioeconomic status, to being thrust into an environment where I was now experiencing the pathway of a minority in that situation, going to a school with such affluence.

‍Bekah: It was hard, but it was a very good experience for me because it allowed me to understand how to operate and succeed in various situations and circumstances. By that I mean, I feel like you could drop me in any group of people, whether that be differences of racial and ethnic differences, of socioeconomic differences, social differences, anything, and I feel like I could fit in. I learned very well how to adjust and assimilate to different situations and people with my experience at BB&N.

‍Bekah: The other huge asset I felt like having gone to BB&N gave me was exposure to various sports. For me, the love of athletics started very young. As I mentioned, I started at BB&N in kindergarten. That was the same year that I began Cambridge Youth Soccer, and it was an immediate love. Soccer for me is my one true passion, of course outside of my kids and my husband. It was something that I immediately gravitated towards. I often talk about soccer for me as a positive feedback loop, the more I put in, the better I got, and the more rewards and accolades I received. It just was this positivity that I really thrived on. I constantly was giving as much as I could to soccer and to sports, and through that, received a lot of recognition, particularly in high school, becoming an All-American in both soccer and lacrosse both my junior and senior year. Then that opened the doors to higher education in a way that I don’t think I would have the opportunity otherwise. Meaning if I didn’t play sports, I wouldn’t have gotten into as many colleges and universities as I did.

‍Bekah: I ended up going on to play soccer at Brown University and loved that school. It was very similar, I felt, to BB&N, in being a very liberal, laid back, hands off type of school. It also was very close to home and I grew up a homebody and oftentimes homesick, and so it was wonderful for me to have the proximity to my family that I needed. A couple of years of Brown was an amazing experience for me. I will say though, after Brown, I had no idea that I wanted to continue to play soccer because there wasn’t a professional sports team at the time. If you recall, the first professional women’s league started in 2003 with the WUSA, the Women’s United Soccer Association and I… or began in 2001, I’m sorry, 2001, because I got called down to the drafts to try out for it and I didn’t make it.

‍Bekah: I always reference that moment in my life in conversations because it was one of the toughest moments of my life. It was one of the first times that I experienced great failure. I was someone that oftentimes was the best, got the award, got the recognition. To go down to a combine thinking I was going to be the best, thinking I was going to get drafted on all these teams and then walking away being told, “Sorry you weren’t good enough, better luck next time,” was devastating for me. It was this real sliding doors moment in my life where I had to choose if I was going to continue to pursue soccer and a goal that at that moment I failed at, or if I was going to go into the real world and get a real job.

‍Bekah: I split the difference there and continued to play soccer at the semi-pro level while working. I started coaching at that time, I coached for Boston University and Boston College women’s soccer. I’m glad I stuck with soccer because two years in I got called up to play for the Boston Breakers in 2003, which was the professional women’s senior in Boston, and I had a really great season with them in 2003. Unfortunately the WUSA folded that year and if you follow them in soccer you’ll know that there’s been several iterations of the women’s pro league. My only exposure and experience with professional soccer was with that team in that year.

‍Bekah: After that league folded, I was like 23 I think at the time. I felt so old. What did I know? I decided to get a real job. That was my first experience working for a nonprofit. I worked for a small nonprofit called America SCORES, and that was a nonprofit that, for me, was the first time leverage both academics and athletics as the recipe for success. Little did I know that that recipe would follow through with almost every single job I had thereafter. After America SCORES, I went on to run Charlestown Lacrosse and Learning Center, a similar formula. I went on then, after, to run the community relations department for the Boston Celtics and running their Shamrock Foundation, their philanthropic arm. I then went on to run Scholar Athletes as an executive director, again, leveraging academics and athletics as the recipe for success. Now I am at the Boston Red Sox running the Red Sox Foundation.

‍Bekah: Again, we do run programs that try to combine, where we can, both academics than athletics as a recipe for success for young people. If you listen to that story, you’ll recognize the thread of sport throughout my entire life and I feel so privileged and lucky to be at the helm of such a great sports entity to influence change and create opportunity for young people through sport, given my experience and success through sport in my own life.

‍Jay: Let me ask you, going back to your time in school, did you experience discrimination and if you did, how did you deal with it?

‍Bekah: That’s a really good question, and the answer is yes. I would find it hard to believe that anybody that is not ‘different’ hasn’t experienced that unfortunate reality. For me, as I mentioned, I identify myself as an African American female. There were few and far between African Americans, period, at the school and even fewer African American females at the school. For me, coming into that environment and being one of the only women of color and having to represent an entire demographic is challenging when you’re 13, 14, 15, 16, 17. That’s a lot to ask of someone so young. For me, discrimination looked like someone coming up and touching my hair and saying, “Why does your hair look different? Why doesn’t your hair move like mine? Are you always that color?” Or someone coming up and saying, “Wow, nice tan,” and me saying, “I don’t have a tan, that’s my natural skin color.” Of course I heard the N-word throughout my experience at BB&N, never spoken at me directly, but in the periphery and in conversations that I was present at.

‍Bekah: It’s really hard. I mean, I look back and wish I had the coping mechanisms that I know now to be able to combat and address some of the discrimination I faced. But at the time I just internalized, I feel like, a lot of that unfortunately, and had to move forward through it without any real base to help me digest it and understand it. I do know that there were groups that I was part of that definitely helped like the Multicultural Students Alliance, the MSA was something I was part of. That was definitely a place where you could vent and talk about it. Teenagers are going through a lot and it’s really hard to process racism and discrimination and microaggressions that happen all the time, all over the place. That’s a long-winded answer to your question, which the short answer is yes.

‍Jay: When you faced this discrimination as a young African American woman, it must’ve been extremely difficult to deal with. Did you ever bring it to the authorities’ attention? I mean, what proactive actions did you feel comfortable taking at that time? I would also add, did that experience lead you to think differently about members of different minority groups that you may not have been part of, but may have seen similarities in terms of how they were also being treated?

‍Bekah: Yeah, and I’ll answer the latter first. My short answer there is absolutely. Again, not patting myself on the back, but I think if you asked anybody who I was in high school, I was very intentionally inclusive. I made it a point to talk to everyone, whether that was a brief, “Hello, how are you doing?” To actually engaging in a game or a conversation or something with those people. Meaning those people, everyone. But the cliques and the categories that you can identify across high schools, I really surfed across all of them, and I did that intentionally because I knew how it felt to be excluded, and I knew how it felt to be one of, or the only. I really tried to break down those walls of isolation and feeling solitude and exclusion, if you will.

‍Bekah: Again, I don’t know how much of a difference it made, although I do have a story to tell. A couple of years ago, I was at the aquarium with my kids and one of the ticket takers at the front desk said, “Bekah Splaine?” That’s my maiden name. I was like, “Yeah.” He’s like, “Oh, it’s Eric,” and I was like, “Oh my God, how are you?” And he was like, “I’m good. I just want you to know how much it meant to me that you were so nice to me in high school.” I was like, “Oh, okay. Yeah, no, of course. Thank you.” That has stuck with me as really meaningful because you never know what people are going through. All you know is your own lived experience. I really just remember trying to be intentionally inclusive, as often as I can, across these categories of difference, whether that be someone is classified as being the smart kids and they weren’t really the popular kids. I married one of the smart kids. I married one of the kids I graduated with in high school and people are always, “You married Zac Salwasser? Wow, I never knew you guys were even friends.” The long answer is, yes. I tried to be as inclusionary as possible given my own experience of exclusion oftentimes.

‍Jay: I think the other question was, how comfortable did you feel raising the issue to authorities at the time?

‍Bekah: I have to say, I think that’s something I wish I did better. I didn’t really raise many of those issues to the authorities. I think partly because it felt so normal and the authorities were part of the majority. It was a difficult situation to try to go to someone that looked and talked and shared many of the same similar lived experiences as the people committing the offenses to say, “Hey, this person was doing so and so.” I think the place that I went and spoke about those experiences were the MSA, Multicultural Students Alliance, and my parents, and my brothers and sisters. I wouldn’t even say really my friends because most of my friends weren’t ethnic minorities and did not experience those experiences the same way I did. In that way, it was a very isolating experience in many ways, unfortunately.

‍Jay: Let me ask you, you’re an athlete and you’ve always been an athlete and an accomplished athlete. We’re recording this during the height, or the buildup to the height, of COVID-19 in the United States. On a personal level, what do you do to keep yourself active when most of us are isolated in our homes? What type of advice would you give to people, not only to keep themselves physically active, but how to deal with issues of mental health in isolation.

‍Bekah: Absolutely, and I’m going to go out on a limb and expose myself here and say that I feel like I have had a heightened level of anxiety over this time at my house. I’ve never spent so much time indoors, I’ve never spent so much time sitting, I’ve never spent so much time online. As you know, most of the news out there is a little bit anxiety-inducing. I’ve struggled recently with some increased levels of anxiety to the point where I’ve reached out to my PCP to have some conversations about that. Certainly looking into some conversations with a therapist to make sure that I get the help and assistance I need to make sure that that doesn’t go unchecked. I would just encourage anybody that’s experiencing anything like that to reach out to the resources that are available to them to make sure they’re taking advantage of them to ensure that they get the help that they need to address any issues that they see happening in these unprecedented times.

‍Bekah: I’ll commend the Boston Red Sox, because we have daily communication coming out from our HR department telling us about opportunities to reach out around mental health to make sure that we are speaking to the right types of people at the right times around any issues that we’re having. For me, this has played out with lack of sleep. I’m experiencing insomnia. I just have not been able to sleep the way that I have been. I think, for me, it’s because I’m now carrying the weight of having three children under seven, my kids, at the house. I’ve got to keep them alive, I’ve got to keep them fed, and most importantly educated. At the same time, my husband has to maintain his full-time job and I have to maintain my full-time job. Doing all of that under the pressure and umbrella of a growing pandemic is really, really frightening. I’ve suffered recently with some insomnia and anxiety issues.

‍Bekah: Again, I say that to lessen the stigma around talking about this stuff. I feel like too many people feel they’re going to be judged for saying that. I want people to know there should not be a stigma around talking about the issues that you have because I wager to bet that more people than you recognize are suffering with these issues. I would just encourage people to get outside, obviously maintain social distancing, but even if it’s taking a walk. I went for a walk around my block and I live in the city, I live in Dorchester, in Boston, and there was still a lot to see. I still had to maintain distance around people on the sidewalk, but it’d be so much mental good to just go outside and reconnect in my community and just get some fresh air and move my legs and just get outside of my physical house was very, very helpful.

‍Bekah: Unfortunately, I have an injury right now which prevents me from running and doing any kind of real exertion in terms of exercise. But I do have an ERG in my basement, a rowing machine, and I am able to do that. That has been my personal exercise recently. An ERG is great because as much as you throw at it, it can take. You can go hard for 10 minutes and get a really great workout. That’s about the time limit I have right now given the other priorities in my life with my kids and my job. That’s all I have to give to working out every day or every other day. But for other people, I encourage you to try to disconnect from the regular priorities that you’re facing and just give yourself 10, 15 minutes to just not think about any of that and to really just be in the moment of physical activity, whether that’s walking, whether that’s jogging, whether that’s even meditating, anything outside of just sitting still. I think the disconnection is what’s really, really important.

‍Jay: Well, first of all, I think that it’s so important. We’ve set up weekly times for our staff to do yoga together and constantly talking about mental health and where we are. Some people are dealing with it better than others, but there’s no judgment and we’re really encouraging people to get the help and to take care of themselves because this is a unprecedented situation where we’re stuck at home and we don’t know how long we’re going to be stuck at home. On top of that, we’re going to be faced with really, really sad situations where, if what happens happens that the government’s talking about, we’re all going to know people who are ill and passing away from this. It’s terrible these are the times that we’re living through.

‍Jay: I really want to commend you on a really impressive sports career. Sports is not easy, whether you do it junior varsity, varsity, college, professional. But one thing I’ve always wondered about professional athletes is, at someday, sometime it comes to an end. I mean, there’s a line in the movie Moneyball, which I’m sure you’ve seen, they’re talking about baseball players and they’re saying, at one point we’re all told that we can’t play the boys game. At some point it comes in little league or high school or college or in the minor leagues. But when your professional career ended, how did you deal with that?

‍Bekah: Yeah, that’s a really good question. The short answer is, not easily. It was a very emotional time for me. I played professionally for the Breakers, like I said, in 2003 but then I went on after that league folded. I couldn’t stop playing soccer, I loved it so much. When there was no pro league, I went back to playing semi-pro. I played semi-pro from 2004 and then I officially retired in 2011. It all just actually made the decision for me. 2011 was the year I got married, so I had stepped into having to plan a wedding and I met the man of my dreams, and I was moving on. We knew we wanted to have a family so I knew I couldn’t probably play forever.

‍Bekah: I also was playing with the team that, in 2011 we won a national championship at semi-pro level. I was like, “Let me go out on top. This is the perfect time. I’m the oldest player on this team, I’m captaining this team.” The best way I felt like I could have possibly ended my career short of playing professionally, because at that time I was still working a full-time job. I needed to have a soccer career that was symbiotic or worked in concert with my professional career at my career with Scholar athletes, being the executive director there.

‍Bekah: We ended up winning the national championship. It felt right. My body was starting to not do the things that my mind wanted it to physically. I knew I wasn’t going to be able to keep pace with the 22-year-olds that I was playing with, and so it just all felt right. Now that said, I cried for days, I think, after my last game, after we won. It was a joyous cry, but it was also a real sadness that I was never going to be able to play, I was choosing to not play, at the level that I once did. There was definitely a process that I needed to get through to feel like I had the right closure I needed to move on from my career.

‍Bekah: I would think that that is somewhat normal for a lot of players, is you’ve got to come to emotional grips with the end of your career. I feel very badly for those that are ended by an injury, because it’s not on your terms. For me, I felt lucky that I was able to choose the ending of my career and go out on top, going out on a game where I played the full 90, we won in the finals, we were national champions, I captained the team. I think I was even MVP of the game and so I got everything I could have out of that last moment of my professional career. I continued to play and I still continue to play, just not at that level.

‍Bekah: I think I will continue to play. Honestly, I plan a tournament every year called the Vets Cup and the classifications for age groupings are, over thirties, over forties, over fifties, sixties and seventies, if you can believe it. There are seventy-year-olds that come out and play and I’m like, “That’s totally going to be me, I think.” I’m 41 right now and I still play with the thirties, so that’s what makes me feel great because I can still play with 30-year-olds even though I’m looking 42 in 20.

‍Narrator: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive.

‍Jay: Please remember to subscribe, rate and review us wherever you are listening.

‍Jay: Well, congratulations, again, on your career and your transition to working for the highest level of Boston professional sports teams, first working with the Celtics and now the Red Sox. Must be gratifying to have an integral part in some of the best teams around the world in professional sports. Maybe you can talk a little bit about getting involved with the Celtics and what you did there and then how that led to coming on to the Red Sox.

‍Bekah: As I mentioned, I was the community relations director and the Shamrock Foundation director for the Celtics. I’ll say that when I started, the biggest adjustment for me was actually seeing the discrepancy between how male professional athletes worked and lived and how I worked and lived. Just a sidebar, I made less than $15,000 a year as a professional soccer player. I was living with my sister, I didn’t even have my own car, literally lived paycheck to paycheck. Then juxtapose that with coming on to the Celtics and seeing male professional athletes with, I can’t even get into the numbers in terms of their contracts and the cars they drove, the houses they had, the jewelry they had, the salaries they were making. It was just night and day. I have to be honest, that was a little bit infuriating to me. Even the best paid women’s soccer player couldn’t even hold a candle to the lowest paid Celtics player.

‍Bekah: That was hard for me. It was a learning experience. I really loved my time at the Boston Celtics because if afforded me the ability to understand all that goes into making a pro team work, which I never really got having played for the Breakers. Of course my time was spent on the field, not in the office with the Breakers. Now I was at a desk behind the office. I was shocked at how many moving parts it took to actually execute a game for the Boston Celtics, let alone the season, and then the post season. It was mind-boggling how much work went into it. For me, running the foundation and the community relations department was just a dream because I essentially got to leverage the players, all the assets, all the inventory, to bring opportunity to the community.

‍Bekah: To be able to leverage a brand like the Boston Celtics for good was fun. I mean, I think that’s the best part I can give you, it was amazing. To connect the dots between the benefits and opportunity was great. By benefits, I mean what player. What type of work? He liked to go to a hospital, he liked to go to schools, he liked to work with young people, he liked to work for veterans. I’m looking in the community and saying, “Okay, let’s match you here. Let’s match you here, let’s match you here,” and then creating the programs in between to maximize the outcomes was really amazing. But it was a lot. I had to work every single home game. That was the mantra back then when I worked with the Celtics. I think they’ve since changed that.

‍Bekah: It was a lot of time spent at the TD Garden and a lot of time at the office. As I mentioned, I was looking to start a family and I knew it wasn’t something that I could sustain forever. I was approached by John Fish, who was the CEO of Suffolk Construction, to run his nonprofit that was called Scholar Athletes. That was a really exciting opportunity for me because it allowed me to get a little bit deeper into the direct service work. At the Celtics, I was a little bit removed from the direct service and more playing a connector of resources. At Scholar Athletes I was really getting my hands dirty with the work and really in the schools, in every single Boston public high schools, in Springfield public high schools, in the Everett high school, working with the administrators, working with the students to maximize their outcomes.

‍Bekah: I was there for seven years running that program and really starting it and growing it, which was a new opportunity for me as well. To understand how to start and then roll out and sustain a nonprofit was something new for me. While I was there, we ran galas every year as many nonprofits do to bring in unrestricted revenue. One of my gala co-chairs one of the years was none other than Sam Kennedy. Sam Kennedy is the CEO of the Boston Red Sox. Sam was my co-chair for one of the galas at Scholar Athletes. Given my role as executive director, I worked very closely with Sam, making sure that he had everything he needed to be a successful gala co-chair for Scholar Athlete. Little did I know that he was taking notes.

‍Bekah: Sam called me eight months later, or almost even a year after our time together, and just said, “Bekah, I recall working with you through this process at your gala and I really enjoyed working with you and your personality. It was great and work ethic and blah blah blah. Would you be interested in having a conversation about coming over to the Red Sox to run our foundation?” For me it was just, seven years at Scholar Athletes was amazing, but it was also a lot, a lot of work to get that organization up and running. I felt like, emotionally, I was ready for a change, and it was the Boston Red Sox, I mean, you can’t turn them down. I went out to lunch with Sam and Tom Warner who is the chairman for the board of directors for the Red Sox Foundation and they had a very compelling conversation with me about what the opportunity would entail at Boston Red Sox and I couldn’t say no.

‍Jay: I have four teenagers, then obviously sports fans and Bostonian’s, and athletes are really held up as role models. I have to say, in terms of disability and mental health, there’s been some real great examples. I mean, the one that I’m thinking of right now is Kevin Love in the NBA and coming out and really talking about anxiety and how he deals with it. I think if you’re a younger person and you hear that, “Hey, this is not an embarrassment, this is something to be talked about. This is real. This is like, if you pull a hamstring. This is an issue that we have to deal with in bringing it out of the closet,” I think is really important. The Red Sox are a hugely respectable organization, not just in the New England area, but across the MLB and sports in general.

‍Jay: We as a foundation have focused on the civil rights and inclusion of people with disabilities in society, which is going to be severely, severely tested during COVID-19 when the medical community has to make some very serious decisions about who gets treatment and who doesn’t. Our position is, a life is a life and everyone should be respected. But we’re working with the Boston Red Sox and Boston Red Sox Foundation on the issue of mental health. Maybe you can talk a little bit about that partnership and what it’s going to entail and what it means to the organization.

‍Bekah: Let me preface what I’m about to say with a huge thank you to the Ruderman Foundation for just bringing this to the forefront for us, for our community, for the Red Sox, for everyone. Mental health, it should be just synonymous with a muscle that you work out, you stretch, you maintain. It is part and parcel with living a healthy life. I feel like we need to recognize that and be comfortable talking about that as often as we can. To your point, leveraging the celebrity of professional athletes to do that is an incredibly impactful way to break down the barriers that, unfortunately, exist around this conversation of mental health. In partnership with the Ruderman Foundation, what we’re really excited about doing is getting more of our players to speak broadly, to speak openly, about the conversation around mental health and about the importance of mental health, and we’ve already done that.

‍Bekah: We just hope that we can start to build somewhat of a captain, if you will, for no better term, for this to say, “Can you choose to have this as your purpose and champion this cause in a way that you, more than me, more than Sam Kennedy, more than really anybody else could break down so many barriers that we need to as a country?” One thing that we’re very excited to do also. in addition to leveraging players and players celebrity around this, is to dedicate, and not only one game, but prior to, I believe, almost every day we’re going to be airing a PSA in the Park that talks about mental health and the importance of addressing these issues as a community and as individuals. But getting back to the game day, we’re really, really, really excited about allocating almost every end game resource during an entire day and the entire broadcast to building awareness around mental health.

‍Bekah: One thing I know that we’re doing at the Red Sox foundation is, we are ensuring that all of the grants that we give out through our impact, are going to be given to nonprofits that are doing groundbreaking and meaningful work in their communities around mental health and achieving mental health outcomes in their communities. We’re going to be running an online viral campaign to have Red Sox Nation select the top organizations that are doing that work. It’s a really, really unique program of ours whereby we leverage our fan base to identify the nonprofits that are doing great work. The nonprofits in each state surrounding Massachusetts that receive the most nominations will be the ones that win. Those organizations will come in to the broadcast into the game that day and be recognized on-field, which is really exciting. In addition to the recognition, obviously will be receiving a grant which will help go towards their work in mental health. I think this is just the first step of many that we hope to do in partnership with the Ruderman Foundation around the idea of lessening the stigma around mental health and growing awareness for mental health as a partnership.

‍Jay: Well, first of all I want to thank you because, I mean, it’s been an honor to work with the Red Sox. It was a privilege to meet with Sam Kennedy because I think he’s a real leader in the field. I actually have gotten to know Billy Bean who’s an executive at MLB, who is the inclusion officer under the commissioner. We’ve had some real successes working with Billy and he once made a statement to me saying, “If Sam Kennedy gets behind something, then the rest of MLB is going to pay attention.” I think mental health touches every single family, so I think there will be a lot of engagement.

‍Jay: The videos, which is a little bit of a spoiler and I’ve seen some of them with some of the players, I think will be hugely impactful. Someone who goes to a lot of games and I hope the season will happen this year and we’ll have a baseball season, but I just remember the, “No place for hate, speak up if you hear something about racial discrimination,” those videos that would run in every game and how impactful that message is to an entire fan base. I hope that it will expand beyond Boston to other ballparks across the country. It’s important to take this out, the stigma.

‍Jay: I mean, we’ve worked with police departments and stigma has a role there, unfortunately, in our society. First responders, and especially now in this crisis, suicide is a real issue. More first responders die by suicide in the line of duty, and it’s time to bring this out of the shadows and really talk about it publicly. The Red Sox Foundation does so many good things. Maybe you want to just talk a moment about the partnership with Mass General and the Run for Home Base, and tell us a little bit about what that’s about and how that helps people.

‍Bekah: The Home Base program, and really I think of them as an organization because they’ve grown so much beyond just the title of a program. Well, how that was started was back, after our championship in 2007, I hope I’m getting my years right. Now you’re testing my knowledge of Red Sox history. The team went down to the White house, obviously which is a norm, to meet the President. While they’re in the DC area, they visited Walter Reed. Tom Warner, who was our chairman, after visiting Walter Reed and talking with the folks in leadership down there, recognized the need for more support for our veterans.

‍Bekah: He actually came up with the idea of Home Base, which would be a partnership between MGH, Mass General Hospital, given they’re one of the best hospitals in the world, and leading research around what Home Base does, and I’ll get into that in a moment. But it would be a partnership between the best doctors in research at MGH and the brand and brand power and amplifier or megaphone of the Boston Red Sox. Leveraging those two assets together could really put some meaningful work behind the need of our veterans that provide so much freedom services, just our life here in the United States.

‍Bekah: That was the impetus for the creation of Home Base. Home Base now, today, 10 years later, well 11 years, it was founded in 2009, is now its own self sufficient organization that runs out of the navy yard in Charlestown that has a mission of curing the invisible wounds of war. How they talk about that is everything from anxiety and depression, to TBI, to posttraumatic stress, any and everything that you would classify as these invisible wounds. Of course, many of our veterans come home with physical wounds that you can see, but it’s the ones that you can’t see that are oftentimes the most dangerous.

‍Bekah: Home Base exists to provide the support and resources that our veterans need to be healthy because we talked about suicide. Some staggering statistic, that’s like 20 or 22 veterans a day commit suicide. We need to step up and do more in the way of services for our veterans to make sure that they have the support they needed once they leave the battlefield. Home Base sees about 3000 veterans every single year at their facility, their center of excellence in Charlestown, completely free. These services are open to veterans across the country. They fly them in and they have a two-week intensive course where the veteran and their family, and I find that very important to note. Because they recognize that for the veteran to really be well and to make the most of their treatment, their family members, the individuals with whom they live and will thereby be with after they leave the services of Home Base, their family members also need services to know how to speak, to know how to support, to know what triggers the veteran.

‍Bekah: The veteran and their family comes in for services through this intensive course over two weeks for free. It is provided by clinicians and research based out of MGH, that’s where the partnership goes back to MGH. We at the Boston Red Sox continue to help brand and make aware to veterans the services of Home Base. We also run the largest fundraiser for Home Base every single year, and that’s the, Run to Home Base. The Run to Home Base is a 9K, 5K walk and run that is done at Fenway Park and raises about $3 million every single year for Home Base. We see upwards of 2,500 runners that come in from all across the country to run the race and walk the race at Fenway Park. It’s done the morning of a game, usually in mid-July, and fingers crossed that we actually can host this year’s Run to Home Base

.Bekah: It starts bright and early in the morning we start with a ceremony right inside Fenway Park. Runners then go out and run around the City of Boston and Cambridge and they are able to come in through the backfield and run around the backstop, the outfield in Fenway Park, and then they cross home plate as their last step of the race. They’re greeted by the leadership here at the Red Sox and the Red Sox Foundation and they get a medal. Then there’s a ceremony pre-game, it happens on a game day. There’s a ceremony, pregame, with the runners and the specific cohort of veterans that we recognize every single year that we run the race. The cohort that we’ve recognized the last several years, last year was families of the fallen, the year prior were Vietnam vets, and this year I believe we’re focusing on African American veterans. We try to find a subset of veterans that we recognize every single year, a different cohort.

‍Bekah: It’s just a beautiful day to bring awareness to the needs of our veterans in this country and to raise critical funds, which all go towards the services that are provided at Home Base every single year. We’re, again, extremely hopeful that we can conduct this year’s Run to Home Base because we do not want to provide any less than what we’ve committed to Home Base for this year’s fundraising.

‍Jay: I just wanted to thank you for your time. This broadcast is called All Inclusive, which is all about including everyone including people with disabilities. Maybe you can talk about, from your own personal experience with the Red Sox and also in general, the importance of including people with different abilities and how that has changed the total atmosphere of the organization.

‍Bekah: Given that I fit into a typically excluded category, being a female and being a person of color, and being underrepresented in many walks of life right now not least of which is my professional career at the Red Sox. I, as I mentioned before, am extremely intentional of making sure that we can bring in the most diverse people into our workforce as possible. I truly believe that when you have as many different types of people, any type of category, you are going to be better for it. The broader you have in terms of your perspective… when you look at life, the broader perspective you have when it comes down to making decisions, the better decisions you’re going to have. I, oftentimes, say that I am in a position of authority and a position of power. The worst thing I could ever do is make a decision that is going to impact somebody whose voice I don’t have represented around the table. I really try to, and every decision I make around hiring and partnerships is try to have as many different types of people recognized as possible.

‍Bekah: I’ll just give you another conversation that I had recently here. This is just a sidebar and you can include this or choose not to include this, but I also coach Dorchester Youth Soccer, I coach my boys’ soccer team, and there has been conversations about inclusion. My children, sidebar, go to an inclusion school, which means that students with extreme disabilities are fully baked into the classroom, which I think is a beautiful, beautiful thing. There are nonverbal students in my kids’ classroom, there are students with a full one-on-one para in my students’ classroom. This idea of kindness and acceptance is at the core of my students’ learning every single day, which I think is so critical for that learning group to have that kind of ethos. Just messaging day in and day out of difference is acceptable and difference is normal and kindness is the expectation.

‍Bekah: Anyway, I don’t even know how I got there, but I coach Dorchester Youth Soccer and there’s been conversation around inclusion there, around whether it should or should not be an inclusion model, meaning accepting young people with disabilities. I’ve had to have tough conversations to say, “Heck yes, absolutely.” We need to make sure we’re including young people that have disabilities in these opportunities, otherwise they won’t get them. PS, sometimes this is more impactful for the kids that don’t have disabilities as it is for the young people with disabilities. I think there’s, oftentimes, unfortunately a lens where we’re looking at this through the microscope of the person that has the disability and not recognizing that this can be almost more impactful for those around them as it is for the person with. That’s also a lens that I often approach this work with is that too often we think of this in a selfish way when it’s actually mutually beneficial.

‍Jay: I really appreciate your time, especially during this very trying time that we’re going through as a country and the world. Really, thanks for joining us today. We really look forward to working with you in the coming months.

‍Bekah: Well, thank you for your partnership. We are so excited about this year one and hope that there’s future years beyond this, and that we can can continue to grow this not only within the Boston Red Sox, but as you said, MLB and with other teams. I think this could be a replicated model throughout the league.

‍Jay:Thank you. Have a great day.

‍Bekah: You too. Take care. Bye.

‍Narrator: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/all inclusive. Have an idea for a podcast, be sure to tweet @JayRuderman.

Jay Ruderman: The COVID-19 pandemic has brought about many challenges for the world. Businesses have closed, schools have closed, and they can no longer gather with family and friends. The biggest challenge has been given to hospitals and healthcare workers who must treat not only patients with COVID-19, but also the regular patient base.

Narrator: All Inclusive–a podcast on inclusion, innovation, and social justice with Jay Ruderman.

‍Jay: Hi, I’m Jay Ruderman and this is All Inclusive. Our guest today is Dr. Dominic Sisti, who recently co-authored the Ruderman white paper entitled “Fair Resource Allocation During the COVID-19 Pandemic: The Case for People with Disabilities and Equality of Consideration.” Thank you for joining us today. Maybe we can talk a little bit about your background and how you got into the position that you hold today at the University of Pennsylvania.

‍Dr. Sisti: Thanks for having me. I’m a biologist and philosopher by training. I was a biology major as an undergraduate at Villanova and a philosophy minor and I got very interested in ethical issues around the time of the Human Genome Project in the late 90s. I decided that I was super interested in bioethics while working for GlaxoSmithKline, actually, in Regulatory Affairs and decided to pursue a master’s degree in bioethics at Penn. Upon my first visit in seminar in that program, I decided that that was going to be my career.

I decided then and there to become a bioethicist to study the ethical and moral challenges that are really intrinsic to the therapeutic relationship between physicians and patients, but also between society and members of society and vulnerable populations. I then went off and did a PhD in moral philosophy and bioethics at Michigan State and finished that in 2010 and came back to Penn to direct a program on mental health care and ethics called the Scattergood Program for Applied Ethics of Behavioral Healthcare.

That’s actually funded by a small foundation here in Philadelphia called the Tom Scattergood Behavioral Health Foundation. I still direct the program and much of my research is focused on the ethical challenges that emerge from psychiatric care. I can tell you a little bit more about the projects from the Scattergood program I do as we continue here today.Everything I do is to try to expose and facilitate dialogue around social injustice is as they relate to people in most cases, psychiatric or mental disabilities, but in general vulnerable persons who don’t often get a fair shake by the health system. That’s been the driving force of my work.

I’ve done research in jails and prisons where I’ve looked at the challenges we’ve got in taking care of individuals with serious mental illnesses inside correctional facilities. These are folks that are some of the most vulnerable persons. They’re often mentally ill, they’re minorities, very low education level, very vulnerable socioeconomically and highly stigmatized. So depending on the specific issues, there’s usually an underlying theme to my work which is to try to undo some of these really large institutional and systemic forms of discrimination against vulnerable persons.

‍Jay: Your work sounds to be vitally important at this time, but it’s mainly ethical and theoretical in nature. And now when we’re facing a pandemic that’s come upon us fairly quickly, how often are you being reached out to by governmental authorities and saying “listen, there are really important medical ethical decisions that we have to make right now and we’d like your input on?”

‍Dr. Sisti: Jay, it is a great question. I mean, it’s too much. I prefer thought experiments to real questions about, you know, extubating one individual to get a ventilator to another individual, and those are the questions that I’m now getting. They’re really scary questions. I never thought, frankly, that we’d ever be in a position where this would be the kind of question I would receive on a workday and have to actually think through with real-world consequences. I mean, I’ve been involved in clinical ethics for a long time and I have consulted on very difficult cases, but this is at a magnitude and the level that I never experienced before. And I can speak for many of my colleagues who share this feeling, but it’s overwhelming. And we’re the theoreticians and the folks on the sidelines talking about the issue so I can’t imagine what it’s like to be a clinician who is charged with the responsibility to make these really impossible choices.

‍Jay: I would imagine in a triage situation there are decisions that are made very quickly and in the best capacity that they can be made, but bring someone with your background into it, I think it will provide an extra level of really thought analysis. How many people would you say are in your position around the United States who are being consulted on a daily basis?

‍Dr. Sisti: No more than a hundred. I would say folks who’re really at the highest level of pandemic response ethics are a couple of dozen at the most. My department chair for example, Zeke Emanuel. He’s involved in a lot of the highest-level conversations around the response to the pandemic. So I would point to Zeke as one of the leading voices in bioethics on this.My former boss and chair is Frandor Kaplan. He’s involved in a lot of the conversation around this and has been taking lots of calls. My interim chair Steve Joffe, you know, he’s another individual who’s been very influential. There’s a group out of Pittsburgh as well who we’ll probably talk about, who had a large influence on the way we’ve constructed in and thought about triage guidelines led by a guy named Doug White. It’s not like we’ve got hundreds of bioethicists roaming the country. It’s a small field and within the field, the population of clinical ethicist who are engaged in this is even smaller. So, you know, I put the number in that may be under a hundred for people just kind of writing and thinking about this and then dozens who are now actively involved in policy at the federal, state, or municipal level.

‍Jay: These conversations that have been happening with hospitals. Are they happening with the local and state governments, or the federal government, or even foreign governments?

‍Dr. Sisti: All of the above, depending on who we’re talking about. For example, Zeke is an advisor to the World Health Organization, so he’s involved in conversations up and down that hierarchy I just mentioned. Others are more hospital-based and working with Hospital administrators and groups of hospitals across the country to coordinate guidelines. So like my colleague Scott Halpern, for example, is a pulmonologist in critical care physician at Penn and he’s been working with Doug White and others to promulgate guidelines that the other hospitals can use the Pittsburgh model. As described in the white paper, has been taken up by dozens if not hundreds of hospitals as a model. So really, depending on the person and their contacts and their role, there’s conversations at all those levels.

I, myself, have had conversations with folks from the Philadelphia DA’s office about the decarcerating of our city jail to empty it out a bit to get to a place where it’s safer. I’ve talked with officials here in the state disability advocates about the same sort of issues that you’ve highlighted, and that we’ve highlighted in the white paper.Questions have come in from individual clinicians and stakeholders in the community who were concerned about how they should behave, whether they should isolate themselves when they go home and stay out of the house or what they should do. So, everything from individual choices and decisions that are now essentially risk-benefit analysis.

Every decision, it becomes a risk-benefit analysis when you’re a clinician involved in this, all the way up to individual, versus community, municipality, to state and federal government. At the federal government level, it’s less apparent that bioethicists are involved. There are these task forces and Dr. Fauci is the leader of I think the most legitimate expert panel that is informing the federal government. His wife happens actually to be a bioethicist named Christine Grady, she runs the NIH bioethics center, so I’m sure he’s getting lots of informal curbside advice from his spouse Christine. I would add her to the list of bioethicists who are influential at this time.

‍Jay: Without divulging any personal information about any patients, can you just give an example of maybe a call you’ve had that’s been in a real-life situation where you had to weigh in on during the pandemic?

‍Dr. Sisti: Fortunately, I haven’t consulted on any specific cases yet, but I’ve consulted on a guideline adoption and visitation policies and things like this, but I can tell you that there have been cases that I’ve heard about where individuals had to be extubated, and doctors in Italy and Spain has written papers in JAMA and issued basically warnings to us. If you don’t do what the public health experts tell you to do, you’re going to be seeing more cases and so the question then becomes how do you ethically and appropriately make that choice to say, “OK, this individual who is on the ventilator now needs to come off of it so that this other individual can have a shot.

They have a better shot and that’s why they deserve the ventilator.” And those are the kinds of cases that I would dread, frankly, being involved with. But we do have evidence-based triage guidelines that are designed to make the decision transparent and less of psychologically draining. These procedures are really well-thought-out and in the case of the Pittsburgh model, the case of the New York ventilator guidelines, things that we’ve cited in the white paper, they involve conversation with important stakeholders, like individuals from the disability community.

And so if I were to get a call that was essentially a question about removing the ventilator, choosing between two or more people for that, I would turn to these guidelines and use them as a tool because they are really thorough, and really thought out and they are ethically and philosophically coherent. At least we have those, and you know, there’s going to be potentially cases where you need to rethink aspects of the guidelines and that’s okay. But for sure I think the majority of cases that would save these guidelines offer us a reasonable and at the ethically appropriate route to – not a good decision, but to a decision that is ethically defensible.

‍Jay: We talked about it a few times and you’ve mentioned it, the University of Pittsburgh medical center triage guidelines. What they are and why they are being so widely accepted.

‍Dr. Sisti: These are guidelines that were first developed by Doug White and Bernard Lowe. I guess it would have been maybe 2007/2008 time, and they were really well-thought-out. They were initially published in the annals of internal medicine. They were criticized for various reasons, some of which I think are relevant to our conversation about individuals with disabilities – the earliest versions. Then the guidelines went through another process of community engagement and deliberation that included individuals with disabilities. And the final version was promulgated in the earliest months of the pandemic and reissued. Essentially what it does is it attempts to show or provide a framework for determining how we can decide who will get a ventilator – which is at the moment a very scarce resource – such that we can save the most lives and also save the most life years. And so those are the basic goals of the Pittsburgh model and frankly, they are the goals of many other guidelines including the New York task force that developed guidelines in 2015 in the event of an avian flu pandemic. The guidelines use a number of metrics that are empirically based and valid. These are metrics that are typically used to help critical care doctors decide and figure out treatment plans for individuals who are in the ICU, ventilator dependent, and they’re based on what’s called a SOFA score. This is about a sequential organ failure score. This is a validated method to essentially predict who will do well in the ICU and who will not on ventilator support in the ICU. And so that’s one aspect of the guidelines is to use the SOFA score as an objective marker for determining prognosis and survivability.

‍Jay: Let’s talk about the fundamental aims. When you say, ‘saving the most lives and saving the most life years,’ what does this mean, and how is this impacting people with disabilities during this latest COVID-19 pandemic.

‍Dr. Sisti: Whenever we think we think about triage, we think about essentially extracting the most value we have from the resources that are available to us. One might think about cases of organ transplantation where there’s a shortage of say kidneys or other vital organs. We would decide and there’s algorithms that have been developed that are used by the organ transplant system in the United States. And there’s multiple different algorithms depending on the organ – whether you have kidneys, lungs, or heart. But they’re evidence-based algorithms that have been developed to determine who should get these very scarce resources. The point is you wouldn’t want to give someone, say, a liver, if – this is actually controversial -they have an active alcohol addiction, that may imperil the health of that liver. It turns out it’s probably not a big deal if they start drinking again based on some of the evidence that has recently come out. But you get the point that the principal there is that you’d want somebody with a healthy quote-unquote lifestyle to take the gift of a liver and use it wisely and not damage it so that they can get the most value out of it. Likewise, you wouldn’t to have a heart go to somebody who has overcome morbidities that will essentially make it impossible for them to stay compliant with their immunosuppressant drugs, right? So if they have other things, and they can’t take immunosuppressants, it doesn’t seem wise to give them a heart knowing they’ll probably reject it or they won’t get as many years out of it when somebody who could live a full life will get the heart and be okay.That’s one example, and when you have cases of individuals with disabilities, and disability is such a such a broad term, it’s hard to generalize here. If, for example, you have an individual with an intellectual disability, you might hear folks say ‘well, you know, they don’t really deserve the ventilator over this kid that maybe doesn’t have an intellectual disability because the kid that doesn’t have an intellectual disability – and this is something you might hear – has a better quality of life or has a better shot at being socially useful in some way. To having a job, or creating economic growth or something, right? You might even create a thought experiment where it was a CEO who was an entrepreneur and can create all this wealth potentially, versus somebody who isn’t and is maybe intellectually disabled. Should it matter that the CEO creates all these jobs? Those types of questions are really difficult and disturbing, and at the end of the day we want to be able to say ‘no, those things don’t matter so much to the medical decision around the ventilator.’ We don’t want to begin to look at the value of individuals lives in the economic way. It takes us down a very dangerous path if we start to think that way and so the guidelines have checks and balances in them to try to prevent those kinds of biases from seeping in. The goal is to provide everyone with equal opportunity to the scarce resource. Now, if an individual with a disability has a comorbidity that would make it difficult for them to survive on a ventilator in a hospital, even with the accommodations that they otherwise should get, I would argue that individuals with disabilities and pre-existing conditions should get a higher level of treatment, of accommodation almost. To be able to provide them the health care they need in a way that’s ethically appropriate, they should get those resources.It turns out, a lot of folks with disabilities have limited access to healthcare, they have limited access to support. Those are all sorts of structural things that exacerbate, often times, the conditions, the comorbidities, the disabilities, so they shouldn’t be penalized for those things. They shouldn’t be penalized for society’s inability to provide accommodations and accessibility to care previously, that maybe made them sicker, or exacerbated a disability. I would argue that individuals with disabilities have, you know, we have a moral obligation to recognize individuals with disabilities as vulnerable persons who have been penalized systemically. They should get equal consideration and potentially additional accommodation. All of this should be based in empirical evidence. It shouldn’t be just ‘this individual disability gets it, or they don’t get it.’ It should be really rooted in an empirical assessment of the individuals’ prognosis and diagnosis.

‍Jay: I understand the pre-existing conditions and how they can impact these decisions based on which patients may more successfully recover based on the condition they come in with. But what about the moral issue? Let’s say you have a 20-something year-old coming to the hospital with COVID-19 and a person with a disability coming in. The person with a disability, let’s say, has a family and is a contributing member of society, and the person without the disability has a long criminal record, let’s just say. Are those decisions part of this at all, or is it purely medical, like can you survive? I’m just thinking on a moral sense – and maybe this is not part of it at all. But you might be able to save a life of someone who may be ultimately a detriment to society for a long time. As opposing to save someone in a somewhat compromised position who is a real benefit to society. How are those decisions made or if they’re made at all?

‍Dr. Sisti: Years and years ago, the earliest rationing committees – this was around the time of kidney dialysis just being invented – and there was a hospital out in Seattle that had to make some tough choices around the rationing of kidney dialysis machines. This was in the late 1960’s, and they did in fact use social benefit criteria. So, you can imagine how that went. Individuals who were really well-liked in a community -maybe they were community leaders, religious leaders, people who had some quote unquote, ‘social worth’ to the community got favored over others who didn’t. And that’s just wrong, right? We now would argue that that was just patently unethical. We don’t want to use these subjective criteria around social worth to make these life-and-death decisions.So, in a hypothetical you describe, the fact that the individual has a criminal record is irrelevant in the fact that the other individual may have a great job, and has the means to create more jobs, that’s irrelevant as well. It really does boil down to as objectives as you can be about the medical facts, and where those lead. All medical information, all science, is intrinsically value laden. We can’t really ever extract objectivity without the residue of human values, but we can try the best we can and show that we’re trying the best we can, through transparent guidelines and that’s what these do.

‍Jay: Let’s say for example, someone comes in who depends on a supply of oxygen, they are on oxygen, 24 hours per day. And they have a severely compromised respiratory system. They come in with this, are they just out of luck that this is their situation or is there a way to just say ‘we’re taking this into account, but we’re not discounting them?

’Dr. Sisti: I think that is what these guidelines would do. I think that would be the ethical thing to do. An individual who comes in -maybe they’re all on their own ventilator, and they had their own ventilator. I’ve heard some folks are worried that their ventilators will be taken from them because of the shortage of ventilators, that would be an egregious violation of individual liberty. Ventilators, oxygen, whatever kinds of interventions or supportive devices that a disabled individual use are more like part of them as a human being they become part of their body in a sense. And to remove oxygen or a ventilator from the person, whose life has and whose life has always depended on it, would be the equivalent to like taking someone’s lungs out and transplanting them into another person, that would be wrong. So, if an individual with a disability appears in the ER, they have COVID-19, they have compromised lungs, that will affect their score, of course. But recognizing that they have a disability and that’s a vulnerability, they should be given a chance. It may be the case that most of the critical care clinicians would say ‘this individual’s going to die no matter what we do. In those cases, if that’s the consensus, disability or not, then allocating a ventilator to the person simply because you think it’s a sort of a symbolic gesture or something that seems to support a principle of equality would be wrong. You would not want to do that – that would be irrational. But in cases where all things being equal, except for if someone has a disability, they should have the same chance as anyone else to receive the same ventilator and supportive care. And even a little bit more supportive care to make up for the structural imbalances that may be exacerbated their condition.

‍Jay: Let’s talk about how the guidelines are made as objective as possible and why it would be important to have a disability advocacy organization involved in helping to create the guidelines.

‍Dr. Sisti: I think a key piece here that you want to have everyone’s voice reflected in guidelines and to extent possible accommodate the values of everyone in the community. Particularly in the disability community where there is a historic legacy of negligence and even abuse by the institutions of medicine over the past century toward people with intellectual disabilities, and psychiatric disabilities and physical disabilities. It seems really important to me to have input from communities like the disability community who have suffered under injustices perpetuated by medicine. That’s really the key point is to provide a space in the dialogue and to make the dialogue open to individuals who have been marginalized or hurt by medicine so that those folks can express their values, their fears, their wishes and influence the guidelines to prevent further examples or instances of abuse or negligence.

‍Jay: One of the key takeaways of the white paper that you just coauthored with the Ruderman Family Foundation is the designation that allied healthcare providers should include experienced family members and paraprofessional caregivers of persons with disabilities. How could the treatment process of people with disabilities when they go to the hospital not just help the person with the disability receiving medical attention but how does it help the medical staff?

‍Dr. Sisti: The point there is that many individuals with disabilities depend on others throughout their day to accomplish activities of daily living, various functions that they themselves can’t do by themselves and have caregivers and partners to make those things possible. These individuals are not just friends or family members or visitors, they’re really healthcare providers. And so far, as we can provide these individuals s with proper protective equipment and in so far as these individuals themselves are not COVID carriers – that’s important to know. I think they should be allowed to spend time in the clinical setting with the folks they’re caring for. That would mean that the individual with the disability has not only their regular care giver nearby but also that they’ll have an advocate in instances where difficult choices need to be made potentially. Or just medication choices or various kind of medical choices need to be made and the individual with a disability has a communication problem or there’s not access to various kinds of facilitated communication. So having a caregiver there to be the communicator, the advocate and also as a stand-in for the clinical staff who are going to be very busy, you can have a caregiver with their loved one or with the individual sitting with them, keeping track of them, taking care of them, maybe even learning about the ventilator or the way it works or isn’t working, to be able to monitor the patient so that the actual hospital clinicians can be freed up to care for other patients. A lot of this turns on the availability of PPE, because if you don’t have PPE, you can’t really have these folks in the hospital exposing themselves and potentially others to COVID. But, if you can get them the PPE, it seems to me to be pretty clear that they do have a place within the clinical setting as a clinical caregiver and that would be beneficial to everyone involved.

‍Jay: Let’s talk a little bit about stigma because in 2020 you would think stigma or bias against people with disabilities in a medical setting wouldn’t be there, but obviously, it’s there. And individual doctors, nurses bring their own biases that they grew up with. So how does that play out in this situation and how do we avoid having those biases play a role in the treatment of people with disabilities.

‍Dr. Sisti: That’s a great question and I do agree that healthcare providers harbor stigmatizing views towards individuals with disabilities. In my own work on mental illness, many stigmatizing attitudes and beliefs that we hear about and consider to be problematic are held by healthcare professionals. Almost more frequently than the general public. So, it’s critical that we figure out ways to address this reality. In the 1980’s, when the HIV epidemic hit, we saw clinicians refusing to take care of individuals who were HIV-positive. We saw dentists refusing to take care of HIV-positive folks, and a lot of this was driven by stigma. Stigma around how HIV was contracted. I think these days with COVID we’re not seeing that as much which is fortunate. We’re seeing sort of an opposite dynamic which is really encouraging that people are just volunteering now to take care of these folks and see it as a duty, a professional duty but almost a civic duty to be on the frontlines of this thing. Somethings changed in the ether surrounding this thing – which is a good thing. I’d like to think that we’ve taught a lot of bioethics in the last 25 years in med school and maybe that helped. But with disabilities there’s still this notion of ‘quality of life’ that permeates everything in medicine and – to an extent – understanding and trying to enhance quality of life is legitimate medicine, but it needs to be done in collaboration. It can’t be done through unilateral decisions about a patient’s quality of life. So, to get beyond that set of stigmatizing views you just have to engage in a conversation of shared decision making with the individual who has the disability or their advocate if the individual is unable to advocate for themselves. I think we’re getting to a place where that is a commonsense view that we need shared decision making with the patient or their guardian. That in and of itself that clinicians can no longer make these unilateral decisions about quality of life and by the way, the Pittsburgh guidelines prohibit such subjective assessments – that to me is progress. Now, will there be moments where there still is stigma? Yes. We mention the Alabama guidelines and other states guidelines where they do have exclusionary criteria based on diagnosis so people with intellectual disabilities were being excluded from even being involved in the triage process in the Alabama guidelines that were written and finally rescinded a few weeks ago and revised. So, you see this idea of quality of life manifests still across the country in ways that seem scientific but really aren’t. They might say ‘Oh individuals with intellectual disabilities won’t do as well on a ventilator’ they might have comorbidities, and that’s fine but let’s talk about the comorbidities that matter, not the intellectual disability. Don’t exclude people based on a diagnosis. Don’t exclude people based on their age in that matter in my opinion.

‍Jay: Regarding Alabama, are the states speaking to each other? Are they following similar guidelines or are the guidelines you’re facing different depending on which state you are living in and brought to a hospital in.?

‍Dr. Sisti: they are going to differ. But many hospitals have taken the Pittsburgh model and adopted it for their own hospital and largely kept the model intact. Hospital systems are speaking to each other. I know Scott Halpern who I mentioned before has been working with Doug White to push them out and disseminate them out so that as many hospitals as possible can use them, much like the New York Task Force’s ventilator model became a model in 2015 and Doug White’s group kind of reflected each other’s models and the details of the models have been amplified across both those sets of guidelines. So, these are spreading but it does matter where you are. If you’re in a community hospital in North Dakota where there isn’t a whole lot of bioethics expertise and folks haven’t gotten the memo on the Pittsburgh guidelines, you might still be seeing decisions based on a previous diagnosis.

‍Jay: I would hope that as the virus passes the peak point in some areas that have a lot of ventilators, that those ventilators could be moved to other parts of the country. Especially in rural areas where they may have very few ventilators. We’ll see how that plays out.One of the other key takeaways form the paper is “Prioritizing the needs of patients with COVID-19 over others who are critically ill due to other illnesses or trauma is arbitrary and unjust.”Do you think it’s possible that patients with disabilities and not in hospitals, might not receive the same level of care if they didn’t have COVID19?

‍Dr. Sisti: It’s a great question. I think given the way the health system is being taxed and we have an economic shutdown I think we all are going to receive less medical attention than we would normally get. So, I think its predictable that people with disabilities will also. The problem will be, will that difference in what they get and what they normally get, if that gets to be too wide simply because of their disability, that’s a problem. We should be making extra efforts to provide individuals with disabilities a level of care that is ethically acceptable. Might not be what they usually get because we can’t do that because of the shutdown and things like this. But it should be at an ethical acceptable level that the individual can live and be healthy and be comfortable for the next several months if not year while we’re dealing with this situation. I think that will be a big issue and just access to services, transportation things like this that become much more difficult. These are things that are going to disproportionately affect individuals with disabilities and so we got to be sure we are addressing their needs while maintaining the reality, maintaining the social distancing and. the public health measures that are really important as well. So, it’s a really tough balance, but with conversation and smart thinking, I think it’s doable.

‍Jay: We’ve seen so many stories in the news about nursing facilities, homes where there are multiples of people with disabilities or the elderly or combination that COVID-19 has run through those facilities. And that has led to many deaths. Any thoughts on, in that situation, how that should be dealt with because those seem to be where a lot of the deaths are coming from.

‍Dr. Sisti: Residential facilities are tinder boxes for this thing. To the extent possible, individuals should be moved out of these facilities and placed in safer locations. If they can go home, if they can be with family, and isolated. That’s not always possible and I get that. There needs to be really strict visitation policies again, like if there’s caregivers that need to be there that are from the outside they need to self-isolate when they leave the facility and so it could be registered in some way. They can you know, essentially take an oath of some kind, to say like I’m going to come in and take care of my loved one and I’m going to socially isolate when I leave but really trying to minimize individuals in and out of the place is going to be critical. Ancillary folks going outside should not be allowed in unless they are really needed. Now, I would also say if you can distance peopleif there’s a way to create single bedrooms or single rooms if there’s residential facilities that are double rooms or suites, figuring out how to get people into a single room spaces would be ideal. I know that’s probably not possible for lots of places but some places it is. So, I guess your facilities for example here in Philadelphia, Friends Hospital have single rooms for all their patience. And that’s why it’s at 100% occupancy right now while other facilities are at 50% because they have double rooms, it’s basic math. So, if it’s possible to create single rooms and isolate folks even if it means standing up temporary rooms in cafeterias and other places where you know, you can get people distanced, then that would be ideal. But again, people with complex needs, distance is disruptive and that can be harmful disruption can be harmful, change to be harmful. And so, we have to measure that impact against the healthcare risk to those individuals.

‍Jay: You mentioned that you believe that the pandemic the COVID-19 has put a spotlight on the potential for unequal medical care for people with disabilities. And you think there may be some positives coming out of this – you see how this will lead to any concrete changes in the future?

‍Dr. Sisti: So yes, I think so everything from so it’s being residential facilities the physical plants of places like nursing homes or residential facilities are going to have to change because we have to start thinking about the next pandemic, the big one. This is not the big one I don’t think. I think was global climate change and what we’re finding in terms of this novel viruses out there. There could be a bigger one and many people predict there will be a bigger one. So, we need to be ready for it and that means creating physical plants that can be easily switched over to quarantine distancing capable physical plants. So, if we could do that would be in a good in a good way and he’s residential facilities and even in hospitals and turn to that’s just an architectural note that might make sense. Frankly I think houses are going to end up changing. There’s going to be more houses with little home offices and adaptable spaces for people in case we’re sheltering in place in the future. In terms of policy I would say that we’re going to begin a process of coming to terms with the fact that our healthcare system is utterly broken and unjust. Folks are advocating for Medicare for all and universal health care and other forms of single payer socialized healthcare, I think will win the day. I had a professor of bioethics years ago say the only way we’re going to get to universal health care is if we have a pandemic and people realize what it means to not have health care and how it affects those who do have healthcare when there’s a huge segments of population that doesn’t have health care. He, I think was very right and I still think about that point he made years and years ago. I think we’re going to see that happen. I think that the political will was already here before the pandemic and now we see the consequences of unjust, unequal, fragmented healthcare. It disproportionately affects people with disabilities, people of color, people of low economic status. So yeah, this is going to change a lot and we should be, as Rahm Emanuel says, ‘never let a crisis go.’ It’s an opportunity. So never miss the opportunity of the crisis provides. The opportunity is no here to make a very strong case for universal healthcare that’s just.

‍Jay: I think another issue that I’m seeing reported a lot is food insecurity in certain communities and how that may be leading to an exacerbation of people in poor health and more susceptible to catching COVID-19.

‍Dr. Sisti: Basic things Like food security, housing, that are fundamental to the public’s health. Access to hygienic practices; to being able to take showers, wash your hands, use disinfectants and Purell. I mean, these are basic things – these are not high-tech interventions, these are standard public health interventions that have been used since you know, the Middle Ages, since the plaque. Separating people, getting them what they need, being socially distanced, contact tracing. These are basic public health initiatives and food security is critical. We shouldn’t have to rely on schools to feed kids. Right? So, it’s as if schools closed why should that cause the hunger crisis in a community? I mean I think we now see the important roles of schools in our society is not just about taking care or teaching kids. It’s almost like they become, healthcare providers for lots of kids. It’s important that schools do provide that kind of help, but that shouldn’t be the norm. These should be things that happen emergencies or whatever. So, we’re seeing all of the I think really bizarre and disturbing injustices that maybe we’ve taken folks like me or privileged and didn’t recognize when I was growing up, can see now, just brightly that this is all just wrong. And this pandemic is shining a very bright light on that and if people aren’t seeing it, they’re looking away and they’re in denial because it’s pretty obvious.

‍Jay: So, this might be a little bit of your purview, but I’m just interested here. I think we’re going to see in the next coming weeks, a real clash between those medical experts saying ‘listen we have two social distance and we have to isolate in order to reduce the number of cases’ and those saying ‘economies have to open up because if we don’t there’s going to be all sorts of problems that are going to be exacerbated that affects people in society and their health care their well-being and psychological well-being and so forth as well as their financial future,’ so I don’t know how you see it that all playing out but I see this coming to a head pretty soon.

‍Dr. Sisti: I think it’ll depend on the state and politics. My feeling is that most Americans understand the gravity of the situation, and are willing to take you know, the sacrifices that they’re taking, that we’re taking, to make sure that we do this right because if we get it wrong, this is just going to happen over and over again for the next well – as long as there’s not a vaccine this will continue. I appeal to people’s self-interest when they argue this point and basically say it’s like the penny-wise pound-foolish notion. Where you can get some added economic bump if we open early, but guess what, you’re going to be closed down again in the months and frankly, lots of people going to be dead. You can try, but they tried it in other places, and it caused more carnage and wreckage than had they just kept it closed. Politicians are going to have to listen to the experts for once. At least in the last 3 and 4 years experts haven’t had haven’t gotten the respect that they deserve. These are people who have spent their lives figuring out how to deal with these huge public health catastrophes. Anthony Fauci – 50 years of service. The guy is a genius. He knows how to do this. He should be the one leading the pandemic response at a federal level. These are folks at that are experts for a reason. You wouldn’t take your kid to a mechanic to get their ears checked, you would take him to a doctor who has the expertise and training. That’s what these people are. They’re the experts. They are the public’s doctors who are here to take care of us. The people to listen to are the experts who have trained for decades and have worked for decades in the interest of the public health. Anthony Fauci is one of those people and there’s dozens of others, hundreds of others in the government. They need to be the ones who determine policy and they should be the one to get to really make the call on this question. Trust me they are well aware of the economic issues. They’re well aware of probably more so than any politician of the impact on health that being isolated may cause. They know all of this. They’re not idiots. They get it. That’s in their heads when they’re figuring this stuff out. And so we need to trust them and you know, that’s hard for some people but you know, I feel very confident in these folks if they can be given the power of the day the frankly deserve, and that we all would benefit from.

‍Jay: One final question. What do you think that people disabilities and disability advocacy organizations can do at this time to ensure that they receive an equal level of Medical Care in dealing with COVID-19 but also in general?

‍Dr. Sisti: It’s important that individuals with disabilities have a clear channel through which to communicate their needs and wishes. If they’re cut off, if they’re literally socially distanced, not just physically distanced but they’re cut off from communicating their needs. That’s a big problem. So, I think it’s important that we make it really clear to the public at large that one, you should be checking on your loved ones, your friends, your neighbors, who may have disabilities. And staying in touch and making sure that they’re okay. Being sure that they’re able to communicate out their needs. That to me is the most I think fundamental important thing right now is to be sure that we’re checking on people, and they know that they can reach out to people who can help them. Likewise, for their caregivers or advocates. If you have elder parents caring for a disabled child, those elder parents should be given and provided with extra care and support. Over here in in Penn Valley where I live, we created a neighborhood kind of collective where we can all email each other if anybody needs anything. In particular we’re keeping track of the elders on our block. I think that’s going to have to be the way things work at a local level. I mean, I don’t know how these large apartment buildings in New York City or other places would do it, but there needs to be sort of a really granular grassroots approach to taking care of folks who are vulnerable in the community. Checking in on them, making sure they’re okay. These are the basic things that people just should do anyway. Just to be decent human beings, right? But now I feel like we have an ethical duty to do that anymore. I don’t want to speak for the community individuals with disability here, but my first concern is if they get access to folks who can help them, and communication is so critical in that way.

‍Jay: Dr Sisti I really want to thank you for joining us today, and your expertise is vital as we move forward. Medical ethics of this situation are tremendous, and I think it deserves more coverage. So, thank you for joining us today.

‍Dr. Sisti: Thanks for having me.

‍Jay: Thank you.All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify and Stitcher. To view the show notes, transcript, or to learn more, go to RudermanFoundation.Org/allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.

Jay Ruderman: Do you think New York City will become the most accessible city in the world? Our guest today is working towards making it happen.

‍Announcer: All Inclusive, a podcast on inclusion, innovation and social justice with Jay Ruderman.

‍Jay Ruderman: Hi, and welcome to All Inclusive. I’m your host, Jay Ruderman. We are thrilled to welcome Victor Calise, Commissioner of New York City Mayor’s Office of People With Disabilities. Victor Calise has been a tireless advocate for people with disabilities, both in the Bloomberg and de Blasio Administrations. Victor is responsible for working toward the goal that New York City will be the most accessible city in the world. He advises the mayor and agency partners on accessibility issues, spearheads public-private partnerships and chairs the Accessibility Committee of the city’s building code. Welcome, Victor, and thank you for joining me.

‍Victor Calise: Great. Thanks for having me. I really appreciate this opportunity to speak with you.

‍Jay Ruderman: So tell us a little bit about your personal experience growing up in New York City.

‍Victor Calise: So growing up in New York City was magical. I grew up in an Outerborough, which was Queens and grew up a Met fan and we had an opportunity to do everything and anything. We had our bicycles and we biked around the neighborhood. We played hockey on the streets and we used the cones as our goals. We also pushed local shopping carts and went from neighborhood to neighborhood throughout Queens and played roller hockey. We also played football playing from sewer cap to sewer cap. That was our goalpost and then we would just use the streets as our playgrounds and played a lot of baseball. Stoopball, baseball, you would name it. We would do it and it was magical. It was fun to play everything in the street and see our friends and our family all together and I can’t imagine growing up anywhere else.

‍Jay Ruderman: Tell me how your personal journey has led to your professional journey.

‍Victor Calise: As I mentioned earlier, I played a lot of sports growing up. My personal journey in disability started when I was injured in 1994 in a bicycle accident. I was downhill mountain bike riding. I flew over my handlebars into a tree and at that moment I knew I was paralyzed when that happened, and I wasn’t sure what life would be like as a person with a disability. That was all upsetting. And that personal moment really shaped who I am today, and my disability allowed me to catapult into the arena that I’m in now and we’re working to make New York City the most successful city in the world.

‍Jay Ruderman: Throughout the years you’ve become a champion for disability inclusion here in New York and on a national level and for a very good reason. Tell me a little bit about the innovative actions you’ve taken in New York so far.

‍Victor Calise: So our office has been around since 1972 and we’ve never really held ourselves accountable for what we’ve done. So we were keenly aware of that and put together something called Accessible NYC. And it’s really the state of persons with disabilities in New York City and it touches on lots of different areas, but the main areas for people with disabilities, and we talk about transportation, employment, healthcare, housing, everything the city has to offer. And we really drive those initiatives and look at ways of where the city is building to make them a reality. So we, the city of New York, have expanded wheelchair accessible taxis, we are the biggest next to London. We, right now, have about 2,000 wheelchair accessible taxis on the street. When we’re talking about wheelchair accessibility in the taxi, it’s not the only thing that we’re providing. We’re looking at our cabs, ensuring that we’re installing hearing loops within those taxis.

‍Victor Calise: We also make sure that all of our payment options and screens are accessible for people with visual disabilities. And there’s training that is done with the drivers that drive these accessible vehicles and it’s to get them trained and understand that they can pick up people with service animals, how to work with someone and strap down their wheelchairs properly. So we do training around that. So we’re excited to be able to do that. And we, the city of New York, have made the For-Hire Vehicle, meaning the ride-sharing apps accessible for people with disabilities. We’ve passed rules to increase the number of it For-Hire Vehicles that are on the street. We have agreements to cut down wait times to 15 minutes or less and that’s something that’s going to happen. Central dispatch and share data with the city of New York, which no other companies have been willing to do. But we’ve been able to do that and pass some rules.

‍Victor Calise: With that though we, they keenly understood that we need to really push wheelchair accessible vehicles in that fleet. So what’s been happening is they did not ban wheelchair accessible vehicles so the companies can put as many accessible vehicles they want on the street right now. And we’ve been seeing that number increase. Is that due to the ban? Possibly. Is it due to our rules? Possibly. I think maybe it’s combination of both of them, but that’s one of the ways that we’ve been pushing for transportation. And certainly looking at our subways and how we build on the existing infrastructure and looking at people that are building over subway stations or next to subway stations and what the city is doing to invest dollars in that type of capital project. Those are things that we’re all looking at to move things forward.

‍Jay Ruderman: So let me ask you about transportation because before we started talking on the podcast, you had mentioned your experience as Paralympian in a foreign city and how no one would stop to pick you up. With Uber and Lyft and taxi service, is that still an issue? Has there been enough awareness done in the city so that you don’t have that problem where a person with disability calls a cab and the cab comes and just passes them up by?

Victor Calise: So there’s a couple of different ways that we look at that. Number one is there’s a app called Accessible Dispatch and that is direct to the person. That driver actually knows they’re picking up a person with a disability. So there really isn’t a gray area there because they automatically know that. And I haven’t heard of anybody not being picked up because of their disability. We have heard that people have tried flagging down a cab on the street and not able to get it because the cabdriver passes by. And that happens to lots of other people in the city, unfortunately. So what the TLC does is they really enforce that.

‍Victor Calise: So if someone lets us know about that and takes down that cab number and calls 311, there is a formal process that can happen and these drivers are called in and there’s a court date that they have to sit down to and they have to. They’re held accountable to that. But if we don’t know about it, we can’t fix it. So if that happens here in New York City, I encourage everyone to take down that cab number and call 311 and file that complaint and see how the process actually works. And I’ve done that myself because that has happened to me in the past and when we let people know we hold people accountable and when we hold people accountable, they’re less likely to do that.

‍Jay Ruderman: Right. So let me talk a little bit about the subway system because studies have shown that transportation is vital to the employment of people with disabilities. If you can’t access public education, you can’t get to a job, the chances are you won’t get the job. New York is having one of the oldest and most extensive subway systems in the world. The Ruderman Family Foundation in the past working with activists in the city found out, and correct me if I’m wrong, that out of the 500 so subway stations in the New York City area with all the boroughs, about a hundred of them are accessible to people disabilities. Now, I understand it’s an old system and there’re some upgrades and there’re costs and it takes time. How do you see the subway system in New York right now in terms of accessibility?

‍Victor Calise: By the year 2020, 100 Key stations will be accessible. That’s transfer stations, Key stations that people use around the city. So that’s really something that’s movement. When that lawsuit came out from Eastern Paralyzed Veterans Association back in the 70s and 80s it was held as something extraordinary, and it was because it really brought some access at that time. We have grown and people with disabilities are more vocal and wanted to be involved in everything the city has to offer. So that pressure certainly has pushed people to really think differently and we have to do a better job. The stations are not as accessible as they should and I don’t think the MTA would say the Mass Transit Authority, who runs the system, would say anything less and they have and agreed and Andy Byford, the new President of the MTA, has put together a fast forward plan and it was to make sure they engage employers for a better system.

‍Victor Calise: They cut down on wait times and one of those key initiatives is accessibility and that’s extraordinary, to actually hear it and be put out there. And he’s backed up his words because they’ve hired their first Accessibility Chief that reports directly to Andy and that’s the person called Alex Elegudin. So Alex Elegudin who is working on this accessibility is a person who uses a wheelchair himself, so he’s keenly aware of what needs to be changed in the system. And in the fast forward plan, they really talk about accessibility, making stations more accessible, making every other stop accessible and really being able to push that forward, and they need help. And the city of New York is working right now. We’re looking at different ways to include accessibility. In our Accessible NYC, we have broadly talked about incentivizing developers to include accessibility within their footprint of a subway station. What’s in the nexus of that subway station?

‍Victor Calise: Because we’ve seen people that have built over subway stations and accessibility wasn’t added. So we have, for years I’ve been pushing that and where we hear that people are more interested in doing that. Working with city planning and pulling this all together is important because we need lots of actors to make the system accessible. And when we talk about accessibility, it has to be on a broad scale. It has to be for people with visual disabilities, people with hearing disabilities. And we need to be able to talk about that and navigate that as one issue and not just a separate issue. So elevators help everybody, people with luggage, right? We need those tourists dollars, so we need them to come in. The aging population, our cities are not getting any younger, both in infrastructure and in age of the residents that are there and we need to be able to provide for them as well. So we need lots of different options to really include our diverse population of people throughout our city.

‍Jay Ruderman: And my guess is that in a city like New York, not only the subway system, but the bus system is hugely important in terms of people moving around the city. How are the buses in terms of accessibility?

‍Victor Calise: So that lawsuit that happened made buses accessible and there was a quote by Mayor Koch at that one time that said, “It would be cheaper to send people with disabilities around in limousines then it would be to make the buses accessible.” Well, 100% of those buses are accessible today. It’s a great way for people to get around. There’s a lot of training that has gone into the drivers to ensure that they properly load people with disabilities and strap them down securely so their chairs don’t slip. The MTA has a strong policy in ensuring that people with disabilities have access to those buses and if something’s not working they want to know about it so they can fix that and address it and we don’t know about it we can’t fix it.

‍Jay Ruderman: You have a powerful position in the city in order to move forward disability rights, but you’re always reliant upon the leadership of the city in general. Can you talk a little bit about your relationship with the leadership, the mayor’s office and how they have internalized this issue? Have they seen it as an important issue and how has your relationship been with your superiors?

Victor Calise: Having top-down support is integral in anything that anyone ever does and it really comes from leadership. We’ve been fortunate with Mayor de Blasio that he understands disability and he’s pushed his administration to do that, and how? Well, number one, by making sure that we have a good representative of the mayor’s office pushing that and we’ve been able to build a bigger team here under our office. We started with eight, we’re about 26 people right now when I came into office, and talking with the mayor on lots of different issues with what they are and how they can support people with disabilities.

‍Victor Calise: And my deputy mayor who I report to because I’m only one level away from the mayor, supportive of disability. Making sure that when we’re looking at the agenda that it’s across all agencies and we’ve done a really good job. There was a local law with disability service facilitators and that made sure that they, disability service facilitators, are across all agencies, meaning that someone is working on disability-specific issues and addressing that within the agency. Either it’s in capital projects or in programs and services because under title two that’s what we have to do.

‍Victor Calise: And we’ve been really successful throughout Department of Transportation, Department of Parks and Recreation, Department of Cultural Affairs, making sure that when we put out our cultural plan that it included people with disabilities. Included people with disabilities in the sense of people visiting, in the sense that people were employed and the sense that they could support artists with disabilities. And that’s written in our cultural plan. So that’s the type of leadership that we’re addressing that when we’re talking about safe streets and our vision zero initiative, that is making sure that people with disabilities are included in that, meaning that they’re accessible pedestrian signals and we’re adding more crosswalks that are accessible for people with disabilities. And those are things what a city’s supposed to do. And those are what we’re moving for. Moving towards, excuse me, and we’ve been sued on a lot of different issues and now, I don’t want to be the city that sued. We want to be the city that’s proactive and we think of different innovative ways to be proactive and tech in our cities is certainly one of them.Announcer: You’re listening to All Inclusive with Jay Ruderman. You can learn more. View the show notes and transcripts at rudermanfoundation.org/allinclusive. Please remember to subscribe, rate and review us wherever you are listening.

‍Jay Ruderman: The lawsuits sometimes will bring issues to the forefront that will often cause change and activism I think plays its role. Let me ask you, what are at the forefront of the challenges that you see on a daily basis? And I’ll also include with that, what are the big picture issues that you’re looking at at this time?

‍Victor Calise: I often say, if you’re not seeing, you’re not heard. If you’re not heard, you’re not seen and people with disabilities need to be out and about their communities. That’s the reason why we should have accessibility, right? Because we need people with disabilities to be part of everything the city has to offer. So making sure that everything’s accessible certainly moves that forward and when we’re talking about accessibility, we have to be sure that we’re including people with cognitive disabilities, people with mobility disabilities, people with vision and hearing and we need to make sure that mental health issues, all of that is part of that disability picture and we here in the office have a broad view of that because we are city government, we have to be able to provide for people. Some of the ways that we’re providing for people who are deaf that we’ve never have been able to do in the past is American Sign Language Direct.

‍Victor Calise: Someone could video-call our office through the Internet, through a video phone, get to our office and get a person who is fluent in ASL and be able to address the issues that they have in connecting them to resources here in the city. That’s never happened before. We’ve been able to look at our request for proposals when we’re building new infrastructure, specifically in our LinkNYC kiosks and install accessibility features in their height levels, talkback features, high color contrast, Braille, all of that to be included. But that started in our request for proposal process. So looking at different ways that we can include people with disabilities and getting them involved in society is what we need to do. One of our big initiatives that we have moving forward and the way that we’re really going to change the perception of people with disabilities is employment. We put together a program called NYC At Work.

‍Victor Calise: It’s the first public-private partnership to employ people with disabilities here within New York City, funded by the Kessler Foundation, funded by Nielsen Foundation, funded by ACCES-VR because we have our New York state partners involved with that. We have the Poses Family Foundation and it really drives our initiative because 79% of people with disabilities from the working age of 18 to 64 in New York City are jobless. If I said that for any other group, there’d be riots in the street, but somehow that’s okay for people with disabilities, we can’t have that anymore. We need to employ people with disabilities. Sure. There are a lot of factors why people with disabilities aren’t employed. Social Security Disability, Medicaid, all that has to be addressed. So we put together this public-private partnership and it’s business led and business driven. Usually, what’s happened in the past, there’s been a lot of people with disabilities sitting around with service providers and what’s absent from that is businesses.

‍Victor Calise: So we’ve actually included businesses in every job sector. We’re looking at finance and looking at transportation, employment, retail, healthcare, making sure that city government’s at the table with that as well. And we have big names that are involved and we put a business development council together with over 90 businesses. Right. And we asked them, “Why aren’t you hiring people with disabilities?” And the key takeaways were, “We can’t find the talent.” “HR stops them at the door.” “We’re not sure how to provide for a reasonable accommodation, and when we do hire them, we’re not sure exactly how to advance them.”

‍Victor Calise: Okay. We know that there are over 10,000 students in our city universities alone that doesn’t even count the private colleges, which are Fordham, Pace, St John’s University, Mary Mount College, Columbia, NYU is the big names. So we know that they’re out there. So we’ve connected with all of those colleges to be able to look for talent and we’re building a talent pipeline and a lot of people that have come through our office, through our initiative have come on their own because they found out about our program that they’re desperate for that.

‍Victor Calise: So we actually pull people into our office, we look at their resume, we make sure that their resumes are appropriate and make sure they have everything that they need to succeed. And we give them some tips, give them some informational interviews with our business development council, get them really ready for what they need to do. And we actually match the person with the job. We’re not matching the resume to the job. We actually match the person to the job. We make sure that we set them up for success because no one wants to hire a person with a disability just to hire a person with a disability. They want a qualified person.

Jay Ruderman: And I think that my experience working in this field for decades has been that companies that have really moved the ball forward in hiring people with disabilities at the executive level believe in it. They have a personal connection to a disability in their own family. They believe in disability inclusion, in employment. To expand beyond that, I think in our experience in Boston has been, once you get a company that hires a person with disability and they see not only did they have a good productive worker, but it also changes the culture of the entire company, and in some ways it makes people feel much better about where they are, so we have to get that. But I think what we’re up against, not just in New York, but all over the world, is a stigma that comes out of history where people with disabilities historically have been institutionalized and secluded and segregated.

‍Jay Ruderman: And to move beyond that takes a little bit of education. Someone like yourself and your department can do a lot to work on public-private partnership. So I really commend you and hope that you have future success in that. Let me throw you a question, sort of out of left field. A lot of TV shows and movies are filmed in New York. It’s a desirable location. Is there anything the city can do to promote more authentic representation of people disabilities in film and TV? Because we know from our work at the Ruderman Family Foundation that the more people with disabilities are seen authentically in entertainment, the more stigma is reduced, the more they’re part of people’s lives. Even though in a city like New York where you have millions and millions of people, it’s still a lot of people interact or see things through entertainment. The TV that’s coming into their home, movies that they’re watching, so is there any role that the city can play in order to help move that agenda forward?

‍Victor Calise: Yes, there is. And the Mayor’s Office Of Media And Entertainment has been engaging with us on lots of different issues. Right now as we speak, The ReelAbilities Film Festival is going on. That really started out of New York City and is really all around the world at this point, and it’s growing in its numbers and Mayor’s Office Of Media Entertainment has gotten behind that, and we’ve been running ads and showing positive ads of people with disabilities in our New York City taxis to really drive that home.

‍Jay Ruderman: I saw that on the way up here.

‍Victor Calise: Yeah, and we continue to do that, and we’ve been doing that for a while. We have our NYC TV and we run ads on our NYC TV and we have the LinkNYC, and we promote disability out there as well. And really encouraging that type advertisement really makes people think differently. So working with me, Mayor’s Office Of Media and Entertainment is certainly something that we’re doing and continuing to do, but we really need to drive it a little bit more and talk about and have forums to talk about the issue of the role of a person with the disability through all this filming. And I think that’s more conversation that has to happen. But these are some of the steps that we’ve taken, but there’s more.

‍Jay Ruderman: That’s great. It’s so influential on society. You think of different sectors of our society, whether it’s been the African American community, the Asian community, the LBGTQ community, and how much they progressed in entertainment and how that, in turn, has impacted our society, and the way people see people from those minority groups and New York can do a lot because a lot of things are filmed here. Let me ask you, what’s your vision? What’s the big goal out there? Where could you see New York becoming the shining city on the hill for people with disabilities?

‍Victor Calise: I think of so many different areas. We’ve done some really good stuff in our theaters working with the Theater Development Fund and the Broadway League and right now with Schubert Theatre and they’ve added accessibility features called GalaPro, and I’m pretty sure you’ve heard of it. They’re an Israeli company, and they get all of this captioning and audio description and anyone that’s interested in seeing a show two weeks after it starts can see it. They don’t have to wait for a special show anymore. I mean those are really cool and innovative ways that we’re changing theater and the experience of how you can enjoy what New York City has to offer.

‍Victor Calise: We have looked at all types of new transportation systems that have come out and the future of them. One of the things that we just added is an accessible ferry system. We just opened the ferry system that goes through all five boroughs. We’ve ensured that we were there, in the beginning, making sure that we were in that design process, adding everything that we could for accessibility in a broad scope. We’ve added wheelchair accessible bathrooms because it goes over and beyond what it needs to be able to do. But that very systems accessible. I mean those are things to look at. Really having a person that’s driving this within city government at a high level really changes that. We are looking at tech and how that actually hits our city and how we’re looking at those requests for proposal processes at the beginning and ensuring that it’s there. And what does a city look like that’s driven by tech and how does it include people with disabilities? I mean that’s a big thing that’s happening and there’s a digital infrastructure that’s being built that cannot leave people with disabilities behind.

‍Victor Calise: If that happens, we’re going to be fighting two fronts. A digital system that’s coming out that’s not accessible disabilities along with the infrastructure. So we can’t let that happen. And we’ve been driving accessible tech within our cities and seeing how the LinkNYC can be this convener, this hub within our city to be able to push information and have person to person contact, vehicle to vehicle contact, vehicle to person, vehicle to infrastructure, person to infrastructure. And our Department of Transportation is looking at this and seeing how we can do that. We’ve changed the way that people with visual disabilities cross the street now because we’ve added bike lanes and that disrupter in that bike lane has pushed the vehicles out further. Cars are getting quieter and people with visual disabilities can’t hear what’s actually happening because we’ve disconnected it from that. So how do we use tech to be able to make those bikes connected to that person?

‍Victor Calise: And what does that look like in wearables? What does that look like in haptic vibrations that happen on watches in those wearables? How do we connect that vehicle to that person? How do we drive those smart wheelchairs? Things like that. And that’s something that we’ve been pushing really hard with and talking about and looking with our Department of Information, Telecommunications Technology. We have our first ever Accessibility Chief in New York City running out of our office and working with the technology and making sure our websites are accessible, making sure our apps are accessible, including accessibility in social media. People don’t understand that your Instagram and your Twitter accounts can be accessible for people with disabilities. And just by tagging and describing photos, we do that all across our city and with all of our digital people to say, “Hey, we need to make things accessible.”

‍Jay Ruderman: Right. Well, you’re doing amazing work, and I think that technology will be transformational in moving forward inclusion in our society for people with disabilities. Well, thank you, Victor, for joining me today and for your leadership. It’s amazing to learn about all you’re doing every day for the people with disabilities in New York and around the country, and we look forward to witnessing your revolutionary plans come to life in New York and around the world. Please keep us updated and thank you for your time today.

Victor Calise: Thank you. To find out more about what New York City’s doing on accessibility, please check out our website, nyc.gov/disability.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to Tweet @jayruderman.

Jay Ruderman: With over 7 million social media subscribers, Dr. Mike is one of the most famous doctors in the world. Today he’s joining All Inclusive.

‍Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice with Jay Ruderman.

‍Jay Ruderman: Hi, and welcome to All Inclusive. I’m your host, Jay Ruderman. Dr. Mikhail Varshavski, better known as Dr. Mike, is a family medicine physician, but you most likely recognize him from social media. He’s a social media entrepreneur, TV medical expert, philanthropist, and physician. Dr. Mike, thank you for joining me today.

‍Dr. Varshavski: Thank you so much. I appreciate it and very, very excited to be here.

‍Jay Ruderman: Now, you are now taking medicine to a new audience, with a fresh message, but when you opened your first Instagram account you had a very different purpose. What was that?

‍Dr. Varshavski: Yeah, so when I started my social media career, which it’s now became my career it’s crazy to say, I initially started to prove to folks that in medical school you don’t have to give up your life to study and practice medicine. It’s a very common stigma that’s out there that I think discourages some really bright minds from entering an important field that really lacks some creativity, some unique thinking. I thought that by showing people you can have a successful social life, a good family life, still do well in school, and be involved in a myriad of activities, I thought I could be that motivational driver to get a new set of minds to enter the field. I didn’t have a well thought out plan on how to make this happen because I wasn’t well versed in the social media space, but I learned and evaluated through each one of my actions and mistakes, which there were plenty of, of how to become better and more effective as a leader as someone who is both a professional yet very popular in the social media space. It’s been a crazy, crazy journey.

‍Jay Ruderman: When you first started, let’s dissect it a little bit. What were some of the mistakes that you ran into and what did you learn from that?

‍Dr. Varshavski: I think that I was good at creating and crafting my message, but I wasn’t an effective user of social media in order to get that message out there. In order for me to have learned this message and learn how to get my message out there, I had to practice what I preached. I had to lead by example. I had to start using social media. I had to see where I could do better. I think doctors really fall to the same issue, in that they may know all the possible diagnoses, they may know all the best treatment options, but if they don’t know how to get that message to the human sitting across from them, they fail in their mission. What I didn’t want to do is I didn’t want to fail in my mission to educate people about health, to educate about the field of medicine. How amazing it is and how you don’t have to believe the stigma that you have to give up your life in order to practice medicine. Through all of these situations where I could’ve improved, I then started improving. The only way I was able to do that is by evaluating where my mistakes were.

‍Jay Ruderman: Some of those mistakes were what?

‍Dr. Varshavski: Not being an effective leader. Not using the proper hashtags. Not spreading my message through collaboration, through networking. Because I used to look at folks who network often and view that as a negative thing, as if they were trying to manipulate people or get something from them. But what I later learned, and now I use very passionately, is the idea of influence needs to be instilled in all professionals, especially doctors. Now I study the field of influence and I see how I need to be able to influence my patients just as well as a marketer does because I need them to take their medicines. I need them to change their lifestyle habits to lead healthier lives. The only way I’m able to do that is to understand how social media works, is to understand how human psychology works, and through these methods that I’ve learned and failed in. When I say fail, I really just mean the lack of knowledge in those fields. I can do a better job in being a doctor and a social media leader.

‍Jay Ruderman: What platforms do you find are most successful for you to get your message across?

‍Dr. Varshavski: Initially when I did my social media journey, I started with Instagram because that was what was in front of me. Instagram is sort of a platform that you can only use short form videos and pictures to be successful. It’s very difficult to break down or simplify the nuance of a medical topic into a 10 second video, into a picture. So, my plan of action was to get people really interested in medicine by having them look at my Instagram pictures and then push them to YouTube, which is what I’m very passionate about now. Because on YouTube, I can make longer form content that is still very enjoyable, relatable, fun, but will still educate them. Actually, we’ve coined a term for this called edutainment.

‍Dr. Varshavski: I’m very passionate about this form of education because the people that need health education the most and where it’s most valuable is in the demographic between 18 to 24. If I want to reduce heart disease in an individual from a lifestyle habit standpoint, that is the age I need to start making my influence known. By making a YouTube video where I talk about why nutrition is important, why sleep is important, why exercise is important, that message should be reaching that demographic. If I want to reach that demographic, I have to meet them where they are, speak in a way that is relatable, and keep it fun. Because as much as I want to believe that all people want to learn about their health, I know that when you’re 18 the last thing that’s on your mind is how do I have the lowest chance of having a heart attack later in life? But, if it’s packaged with something within pop culture, and then they get a little bit of learning on the side, I know they’re much more likely to listen.

‍Jay Ruderman: The medical profession is very staid and conservative. You must’ve gotten some opposition from your colleagues. Like why are you going and talking about medicine on social media? People should be coming into my office and I should be examining them. How do you deal with that criticism?

‍Dr. Varshavski: That’s very true, and I was met with a lot of resistance when I first started my social platforms. I think that what I saw was an opportunity to reach a new demographic, and there wasn’t ever a playbook created. I wasn’t following anyone’s footsteps here because no one’s ever done this. I do consider myself a trailblazer in this space. If you look at leading doctors in the media world right now, take Dr. Oz for example, and you look at his YouTube presence, I outnumber it 10 to 1, and I’m a young doctor. I’ve only been practicing medicine out of residency for two years. So, to the people that had their critiques, I heard them. Because they were valid critiques. You need to keep your medical ethics as a first priority when you’re going into media, and not all doctors do this. In fact, most doctors who are successful in media have at one point corrupted their medical ethics. So, the concerns that people had of me entering the social media space were very valid. We need to make sure that doctors don’t corrupt their information.

‍Dr. Varshavski: But I was lucky here. The reason why I got my social media fame, at least the fuel to the fire that really stoked this, was I was named People magazine’s sexiest doctor alive. It’s a funny honor to have, but what that allowed me to do was to have a scandal. The model that I use for my education platform is come for the scandal, stay for the content. If people viewed me as the scandal, if they viewed me as the entertaining portion, they were coming to see a “sexy doctor”, they were coming in to see someone well dressed, who is a funny person but yet is in a professional space, I thought that could be the hook to get them to my channel but then I can educate them on a much deeper topic without needing to corrupt that topic. Because nowadays, if you’re on television, if you’re in any sort of media and you need to present medical information and you don’t have a hook, you end up corrupting that medical information. You end up making claims like this is a miracle supplement. This is the miracle cure. Really, that misguides my patients and I see people suffer as a result of that.

Jay Ruderman: This is completely different from like a WebMD or web based services where someone is coming in and seeking to interact with a doctor. This is you providing information about a particular medical advice or medical condition that’s just consumed by a wide audience

.Dr. Varshavski: I think what differentiates what I do from WebMD is that people really like to get information from a familiar face. In fact, this is something I’ve written about for the American Academy of Family Physicians, about how celebrity advice can get quite dangerous if they don’t have a medical background. Very commonly, with good intentions, celebrities will go through a medical condition and they’ll make a statement, one that they’re very passionate about because it’s affected them, and that statement doesn’t have full medical validity or it doesn’t apply to the generalized population and they’ll mislead a lot of people as a result of this. The reason why this happens is because if you look at human psychology, folks will trust a familiar face much more than they do a stranger. As much as I want to spend hours with a patient in my exam room, there’s only about 15 minutes of interaction that happens. So, who are they more likely to listen to? Myself or the figure that they spend hours watching on television day in and day out with their families?

‍Dr. Varshavski: I took that model that marketer use, usually to sell products, but I use that model to now sell the product of good health and quality, evidence based medicine. I said now that these folks know me from social media, I’m going to drive a message home that we need to do better as a society. Our healthcare system is broken. There are changes that need to be made. There’s information that we think we know but we need to correct because it’s a myth, and that happens quite often. Now, if I’m able to do that in a fun, relatable, easy to understand way, I think I’m doing my job as a family medicine doctor.

‍Jay Ruderman: You’re sort of ahead of your time, because we do live in an age of celebrity, where people become very famous very quickly, for different reasons. Because of how they look or because of a talent that they have, but you’re using it for good, which some celebrities come around to and champion a cause, but it seems like you started with the cause and then celebrity became part of that. No doubt, with 300 billion people on social media, which is a huge new phenomenon in our lives, there’s definitely an impact that doctors can have on their patients through social media. Let’s talk a little bit about what you talk about. Specifically now, you’re here at MIT, the Ruderman Family Foundation, through its Lead20 program, which is a group made up of people with and without disabilities advocating for disability rights and promoting social justice in our digital age. Let’s talk about disabilities. What have you talked about regarding people with disabilities and getting adequate medical treatment? Because I know that that is a huge issue in the disability community.

‍Dr. Varshavski: Yeah, I think you’re absolutely right in that there’s 3 billion people on social media and they’re influencing everything from elections to business strategies. I think health professionals really need to listen to that because I think it’s the absence of quality physicians on social media that’s allowed so much information to propagate. I think that within the disabled community and those who suffer with disabilities or prosper with disabilities, they’re a group of individuals who really can use social media to benefit and champion the idea of training for physicians in this field. The reason I say that is because I myself lack training in this field. For example, I don’t have a lot of experience treating those with disabilities. I don’t have a patient population that has disabilities. In my medical school training, we had actors and actresses who are assimilated patients to help us learn how to give a proper prostate exam or a gynecological exam. What we didn’t have is to have a person come in who has a wheelchair or someone who’s blind or deaf or having autism to help us understand what etiquette should we follow? How should we be approaching these individuals? How can we do better as physicians so that we do come with a more welcoming stance?

‍Dr. Varshavski: It’s great that we may have physical accessibility, even though if you look at the medical space we don’t even do that well, but if we don’t have the human accessibility portion, we’re really failing our patients. Part of what I, after attending this conference, what I want to strive for and to get put out there into the world is doctors really should be more concerned about increasing access to a community of people that not only need healthcare but want healthcare, want to be advocates for change in healthcare. We’re not doing it simply because we’re uninformed. Something I can do on my social media platform by educating physicians how to act, educate myself so I can lead by example, because leading by example is the best thing we can do. Modeling is the way humans learn.

‍Dr. Varshavski: So, what I began to do, last week for example, and it’s going to be live at some point in the coming weeks, I interviewed a very popular YouTuber by the name of Molly Burke. She is actually blind, and she makes that a big part of her internet personality. When she was coming over to my studio to film, I did not know the best practices to make her feel comfortable. Should I be guiding her at the door? Should I not be guiding at all and her guide dog and her caretaker or assistant will help her with that? I didn’t know. So, what I did was to educate myself. I would log on to the American Academy of Family Physicians website and look at the great information that they have there. Unfortunately, that information does not disperse widely. Most doctors are completely unaware of how to handle themselves in this situation. I want it to be A, I learn what to do. B, I encourage my fellow doctors to pick up on this information. And then I put that information out there for the general public to know so we all get better and become more inclusive.

‍Announcer: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/all-inclusive. Please remember to subscribe, rate, and review us wherever you are listening.

‍Jay Ruderman: I think your service, what you’re doing could be hugely impactful for people with disabilities. I mean, we’re talking about a population that is largely segregated. Transportation. The ability to access medical treatment is a huge issue. I just came across a fact that the majority of people who are in a wheelchair when they’re examined by a doctor are not examined below the waist. So, they could be developing a medical condition that’s not even looked at. There’s a huge service that you could play in terms of getting the proper information out there so people can get treatment and preventative treatment before they develop these conditions. I think that that’s a huge thing that you could do.

‍Dr. Varshavski: I agree. I think that there’s really two parts to that situation. First being that we’re afraid of what we don’t know. Doctors that aren’t doing the exams properly may not have been educated in this. They don’t know what to do. Myself, as a person who has the ability and the reach on my social media platforms as well as my speaking engagements within the medical community, I can use this opportunity to give that education to improve these outcomes. Now, because I’m not part of a research institution I won’t be able to track how well I’m doing or how much I’m improving. The goal at the end of the day is if I give the education and people are listening, change will happen naturally because humans want to do better. Humans want to cooperate. People often refer to the Lord of the Flies myth, that if people are left on an island, kids are left on an island, they’re more likely to fight and become bad and evil. I disagree with that notion. I think when left to their own will humans are more likely to cooperate than compete. I hope by lending this education out there, putting the education out there, giving the resources to physicians, we’re going to see major change.

‍Jay Ruderman: Now that you’ve had a great deal of success, are others copying you? Are there other doctors who are now saying yeah, this is the way to reach and treat many more people than I’m able to do in my office?

‍Dr. Varshavski: Since I’ve started my platforms, what I’ve seen is not only doctors pick up and one to one copy what I’m doing in terms of the type of posts that I put out, naming their usernames identically to mine, I also see hospital systems doing exactly what I’ve been doing. The type of information I’ve been putting out. Why doctors need to be on social media. Why the absence is harmful to our patients. Mayo Clinic started a social media institute. There’s new positions being created for physicians where they are the chief social media officers of their hospitals. Like, in Cleveland Clinic they have that. I’m proud of that. I don’t take credit for it. Maybe I played a role in that revolution, but it makes me happy to see that physicians are engaging with a new technology. Instead of just vilifying it, because it’s very easy to vilify and say oh, this is going to rot our brains, this is the reason for the uptick in anxiety … It may be. There may be problems with it. But, instead of vilifying it, we focus on what it does well. It reaches billions of people. People are constantly surrounded by this type of information. There’s a lot of bad information out there and we focus on that. Target what it does well and embrace it. I’m so happy to see that not only doctors but full institutions are making use of social media.

‍Jay Ruderman: When you’re doing a broadcast, there’s so many topics that you could cover. How do you make the decision on what to talk about?

‍Dr. Varshavski: It’s a difficult condition for me to consistently make quality content because I don’t have a full team around. Most people, when they look at the scale of what I’m doing, they assume that there is a major team behind us. Writers, producers, directors. It’s myself and my videographer/editor. Two people making 150 videos within the last two years. Consistently posting at the times we promised to deliver the content. Well edited, well researched. No medical misinformation in there. And, it’s tough. Because I want to not only deliver quality content, but at the same time I want to grow. Because when I grow it yields success to the message that I’m putting out there. For example, one of my biggest drivers in the success of my YouTube channel this year was the fact that I started doing a critique or a review of popular medical dramas like Grey’s Anatomy and House. Most people would look at that, at least most professionals, and say well, that’s not really useful to the community. Well, I disagree on two fronts.

‍Dr. Varshavski: First, I’m educating the average person that’s watching those shows what’s true, what’s not. Maybe even defining some of the terms that are in these shows. The second benefit of this, that’s lesser known, is that when 16 million people watch my video on Grey’s Anatomy, a big percentage of those people then go watch my video on diversity. They watch my video about the nursing field and how we need to support our nurses better. So, when I make my videos, I think A, which of these videos are pop culture videos that we can do a little bit of learning and lure people in, and then where are my hard hitting videos of where I want to see change in society? That happens all the time. Sometimes it’s prompted by current events. A senator says something questionable that’s causing a lot of outrage. I’ll jump right on top of that story. Share both sides, share where we can come together to make a consensus. Because that’s what it’s about. It’s not about vilifying or villainizing people, because at the end of the day that’s going to be hurtful to our message. It’s about bringing people together and educating.

‍Jay Ruderman: I really want to thank you for your leadership and for being an entrepreneur and thinking of a new way to move medicine forward, because I think you’re going to serve many, many people through what you’re doing. We know that 20% of the population has some form of a disability. That they are the largest and poorest part of our population and routinely receive the least healthcare. I’m hoping after attending the course at MIT that you’ll focus on people with disabilities and helping them and really getting them the information that they’re going to need to lead healthier lives. Dr. Varshavski, I want to thank you for joining me today. You’ve built a strong social media platform, and through that you’re shattering stigma and will lead to change. I know you’ll make our society better, so thank you.

‍Dr. Varshavski: Thank you so much for the opportunity. I look forward to meeting that challenge and improving access and quality of care.

‍Jay Ruderman: Thank you.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/all-inclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman.

Jay Ruderman: One person can change the world. In today’s world this is not a cliché. When you have a mission and you want millions to join you all you have to do is connect through social media. My guest today is Chris Ulmer, who’s showing the world the true diversity in the human condition, and millions are tuning in.

‍Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

‍Jay Ruderman: Hi, and welcome to All Inclusive. I’m Jay Ruderman, your host. Chris Ulmer is the founder and CEO of the non-profit Special Books by Special Kids, which has two million followers on Facebook and 1.4 million subscribers on YouTube. What started as an idea of a small town special education teacher became one of the world’s greatest advocacy platforms. Hi Chris, and welcome to All Inclusive.

‍Chris Ulmer: Thank you for having me Jay, it’s a great honor.

‍Jay Ruderman: So Chris, you studied communication and then earner a master’s in special education, and you’re now a social media sensation, with a new Netflix series possibly coming soon.

‍Chris Ulmer: Fingers crossed.

‍Jay Ruderman: Let’s talk about the very beginning. Why special education?

‍Chris Ulmer: That is a loaded question. I don’t like to say that I fell into it because I completely love what I do and I would rather do nothing else, but I did have a bit of fortune ending up where I ended up. After I graduated from Penn State with a bachelor’s in communications I decided I wanted to coach college soccer. So I moved to a small town in Kentucky and I got a job coaching college soccer. Once I started at the university they said they would pay for my master’s degree in education. I was looking at the list of programs they offered and the only one that really stuck out was special education. At the end of the program I had to do the student teaching and just that very first week in there I completely changed the course of my life. I stopped applying for jobs coaching and I started applying for jobs teaching.

‍Chris Ulmer: As soon as I finished my student teaching I found a job in Florida, moved down, and that’s actually where the blog started a few years later. The school I taught at was only for children with disabilities. At first that was the only environment I was familiar with, so I thought this is great, I can give my individual focus to each of these students, they’re growing and they’re learning so much. But about year two or three things started to happen to where I realized that might not be the best environment. For example, I also coached what you would say is a typical soccer team. We were competitive, we went to other towns. I invited my students out to practice with my soccer team, and I noticed, when they would come out, my players didn’t know how to interact with my students and my students didn’t know how to interact with my players, because they were excluded. My students never interacted with anybody who was non-disabled or neurotypical, and my players never had that interaction either. Everybody had a level of ignorance about them because we aren’t educated about disability in society. So I sat back, and I really reflected on is this the best environment, putting my students in a school where they can’t be part of society? Where it’s just all the children with disabilities and nobody’s learning how to function together, how to interact together?

‍Chris Ulmer: For that reason we decided, as a team, we were going to create a blog where my students could communicate with our community. We all sat down, and we had a vote. The students all put a name on the board and one of the students wrote Special Books by Special Kids. We took a vote, most of the students voted for that one, so we decided that’s the name of our blog. Well, we had no clue what was to come. Six months into that we had about 10, maybe 15 000 followers, and I got a call from ABC World News. I thought it was a joke at first. The conversation was about two minutes long, and I left thinking okay, best thing that may come from this is that a little satellite branch of ABC somewhere in Florida or Kentucky might air this story, and we might gain a few more followers. After it aired on the world news across the country they put it on their Facebook page. Within 24 hours it became their most viewed video ever. 50 million people saw it in one day, and that just changed everything for me, my students, and many people around the world, because after that video aired our blog went from 15 000 followers to 100 000 in one week.

‍Chris Ulmer: I started receiving emails from people living all over Florida asking if I could come and interview them the same way I interviewed my students in the classroom, and I thought okay, this is a viral video on ABC, after a few weeks it will die down, people will stop reaching out. But it didn’t. I was getting hundreds of emails two months later, every single week. I opened the email, I typed in the name of my city, and I saw that there were hundreds of emails with that name in the topic. I opened up my email and there was a message from Matt. He had a disability I had never heard of, Dandy-Walker syndrome. He told me that he just finished his first semester of college but didn’t make a single friend. I emailed him back and asked if he wanted to interview. He sent me his address, and he lived five minutes from me. This guy with this deep, passionate story lived five minutes from me and I never even knew it.

‍Chris Ulmer: At the time I was filming with my phone, so I grabbed my phone, I jump in my car, I drive to Matt’s house. We film this interview where he talks about all he wants is a friend, or a girlfriend, to go to the bar with, to go to the arcade with. I rush home, and I swear I had this moment of just realization and catharsis where I realized that our blog could be a platform and resource, not just for the students in my class but people all over the world to share their stories. That was reinforced when I uploaded the video, and with it we included an email address we made just for the occasion, bemattsfriend@gmail.com. Within a day a million people saw it on our own platform, not ABC’s. Thousands of people messaged Matt. Ever since then we just realized the potential of social media, and we’ve been striving to tell these stories and do as much good as we can.

‍Jay Ruderman: So first of all I have to say that you have a very unique way about you. Your way of speaking, your way of communicating, your visual presentation is very attractive and you are very good at getting a message across. But to start out let’s dissect it a little bit. Even to start out with 10 or 15 000 followers, in a very short period of time, is a great deal of success. Set aside ABC and the jump that you made from there, what do you attribute that to?

‍Chris Ulmer: I am so glad you asked that because I think that is important to address. I paid for advertising. The first 10 or 15 000 followers, they weren’t all paid, and they all didn’t see the advertisement, but a large portion of that was because I was paying for the advertising. Facebook rules have changed since then, but I was heavily sharing all of our videos in groups. That combination of network and advertising is what built our first 10 to 15 000 followers. Fortunately, one of them was the woman who worked at ABC World News and reached out for the story. It’s a lot of networking and a little touch of luck in there as well.

‍Jay Ruderman: I’ve watched many of your videos and they’re very engaging. There’s many young people, or maybe not-so-young people with disabilities who are, maybe for the first time, presenting who they are to the world. Did you ever get accused or how have you dealt with people saying, “Oh this is patronizing”? You as an able-bodied person are hosting this show and people with disabilities are coming on. How do you deal with that? I know that you talked about criticism. Where does that come from? It seems like you’re doing a service to the community.

‍Chris Ulmer: I think it’s so important to make the distinction between feedback and trolling. It’s so easy to look at feedback and say, “Oh that’s just trolling,” and dismiss it. Some of it is trolling, I’ll admit that, but I like to look at everything through the lens of feedback first. For example, when I first started SBSK we would receive a lot of comments that, “This is patronizing, this is patronizing.” Then I would look at the comments and they had a common thread among them. They would say the way I laughed was patronizing. So I started to watch the way I laughed, and I really paid attention. And I did. I had an awkward laugh, and it could be perceived as patronizing. In my mind, when I’m on camera with somebody, there should be no silence. For some reason I thought that there couldn’t be silence. So whenever somebody said something funny, even if I didn’t perceive it as out-loud funny, I would force that laugh, because I thought that would give the person a feeling of comfort.

‍Chris Ulmer: Well, the audience was picking up on that, that my laugh wasn’t real and natural, and it was perceived as patronizing. So I stopped doing the awkward laugh. Now, if something is funny, but not out-loud funny, I just smile. The patronizing comments have stopped now. I mean I still get comments saying, “This is wrong, this is wrong.” That’s always going to happen when you have a big following. But you always want to look at it through the lens of feedback first, or else you’ll never get better. If you analyze it, it’s not feedback, it’s trolling, that’s when you just forget about it.

‍Jay Ruderman: What motivates you? Why are you doing this? Because this is now a life’s mission, and you’re having success at it. What gets you going every day?

‍Chris Ulmer: I wish I had some deep, philosophical answer. Number one, I just love it. I can’t really define why I love it. Number two, for a long time I didn’t know what I wanted to do with my life, so I think just having a purpose and a mission that is making the world better, I just feel so fortunate to be in that position, and I know that not everybody is able to have that meaning and that purpose while still supporting themselves. I’ll never overlook that and I’ll always take advantage of it.

‍Jay Ruderman: Tell us about some of the reactions that you’ve had interviewing different people with disabilities and having them tell the story. Because it seems like you’re really enjoying it and it seems like they’re enjoying the process, that this is a fun experience.

‍Chris Ulmer: It is, it’s so incredible to think that we have a community and I have friends from countries around the world, and the interviews, they’re a joy. I have a rule that I won’t even turn the camera on until I feel like I have a friendship with the person. Because our interviews, they’re often open and honest and raw, and that person is going to be vulnerable. I can’t expect them to do that unless they like me. When I go into an interview sometimes we start it five minutes later. Sometimes it’s an hour later. It might take a little more work when you do it that way but you always leave having a new friend. Having somebody who’s part of your community.

‍Chris Ulmer: This week I’m here in Boston for the Link20 Program, and I interviewed somebody who I met in Boston three years ago. We’re still friends, we actually play the PlayStation 4, we play Madden together. I’m the Eagles and he’s the Patriots. I always beat him though. But we establish those relationships because I don’t turn that camera on until we’re friends. That’s why I think the blog is successful, because, just like the people sense my fake laugh, they can sense a fake relationship. The audience is intelligent. I think as vloggers we have to give the audience credit.

‍Jay Ruderman: I think people understand talent and honesty, and you certainly have that. That comes across. I sense what you’re trying to do, you’re trying to expose a community that is often not exposed. Just to say this is part of humanity and I’m going to show it to you. What do you think the people you’re interviewing are getting out of it? What have they told you? What do they get out of it?

‍Chris Ulmer: This is my favorite thing. Our internet community is a huge community, but you have to remember a lot of the children, and adults now, that I interview live in small communities. Although it has a broad effect across the world it’s also their tight-knit community that’s watching. For example, I interviewed a child named Hayes who’s a wheelchair user, and he said that he just wishes other children would play with him at recess. He sits all alone, he watches the children play, and it just devastates him. He was crying, he was very upset when he shared that. His principal played that video for the whole school district so that they could understand how Hayes felt every day out at school.

‍Chris Ulmer: Well, all of a sudden, he’s the most popular kid in school, and it’s not in a contradicting way. Nobody knew he felt that way, and now that they knew they could include him. That’s why inclusion is so important. Unless we have these discussions you just don’t know. I used the word ignorance earlier. I think ignorance kind of has a negative connotation attached to it, but it shouldn’t. Ignorance just means you don’t know something. So those who are ignorant aren’t to blame, it’s the system that’s to blame.

‍Jay Ruderman: Right. We’ve found in our work at the Ruderman Family Foundation that when children are exposed at a young age to disability through different programs like Understanding Our Differences, that it influences them for the rest of their lives. I think what you’re doing will have far-reaching impact, that you probably can’t even see right now. Tell me, you must have so many requests at this point in time to interview people. How do you process them? How do you make those decisions of who to interview?

Chris Ulmer: That is probably the single toughest part of my role, because you want to tell all of these stories. The way people request an interview is through our website. They go on sbsk.org and they click on “Request an Interview,” and once they fill out our whole form it gets sent to my email. We have about 15 000 requests in there and we’re getting anywhere from 10 to 100 on any given day, so it just accumulates and accumulates.

‍Chris Ulmer: The way I choose is, number one, based on location. This week I knew I was coming here to Boston, well, a week or two ago I went to my email and I typed in the word “Boston.” There was about 100 people in the area who’d requested interviews. So then how do I base, after we’re done with the location? Number one, I look for diversity of diagnosis in disability. I make sure that if there’s a rare disability that I haven’t interviewed yet I want to include that first because I want to be as comprehensive in our catalog as possible. If they’re just disabilities I’ve covered already then I make sure I look at race, I look at age. Okay, well I’ve already interviewed this rare disability, but the last person was white. Here’s a black person requesting an interview. We just want to make it as diverse as possible so that everybody sees themselves reflected in our work.

‍Jay Ruderman: So how many different types of disability have you interviewed up to this point do you think?

‍Chris Ulmer: We started just on Facebook and on Facebook alone we have just over 1000 interviews. Now, there’s repeats, like autism, since the autism spectrum is so wide. I’ve probably done about 30, maybe 40 interviews with autism. But I also make a very strong point to include rare genetic conditions that are the only known case. Probably north of 300 different diagnoses, and many of them I didn’t even know about until I read the email. There are so many conditions that are one in ten million that you wouldn’t know unless you’ve encountered somebody with it. I think that’s important to portray in our videos too.

‍Jay Ruderman: What type of feedback are you getting? Not from your subjects or people that you’re interviewing, their families, but just in general. Feedback you’re getting to your social media.

‍Chris Ulmer: It’s changed so much over the years. At first, people were skeptical. They wondered why is he doing this? What is his purpose? But with consistency comes reputation. I haven’t changed our mission. I haven’t changed my style. With the catalog of work people now understand what we’re trying to accomplish. The feedback now is outstanding. We so rarely receive any type of negativity, and when it is I still analyze it through the lens of, first, is this feedback? And if not we dismiss it as trolling. 99% of the time it’s just trolling, and that’s only the .01% of the feedback overall. The positivity though is so much more than the negativity. To read the ways our video resonates with our audience is just so overwhelming.

‍Chris Ulmer: I just received an email this week from a man whose wife was diagnosed with a rare disability and she lost her joy. Her disability didn’t limit her mobility, but she just stopped getting out of bed. This was a whole new world to her and she couldn’t deal with it. She found our videos, went down the rabbit hole, and found her joy again. The husband said that she was signing up for classes, she was leaving the house again, and he sent us a long email and gave us credit for it. I don’t like to take credit for that because I’m not the one telling the stories, I’m just giving the platform and the people I interview, I really give them the credit, but you know, it feels a little good at the same time.

‍Chris Ulmer: My personal favorite story of the feedback: a mom emails me, and her husband had a traumatic brain injury. This is in Tijuana, Mexico. His name was Luis. Well, they had a daughter too, and after the traumatic brain injury the father’s speech and mobility changed drastically. The daughter then developed PTSD and became scared of her father. She wouldn’t go in the same room because that’s her father and she’s not used to the situation. The mom started showing our videos to introduce the daughter to the topic of neurodiversity. After a while the daughter started going in the room with her father. After a few weeks of that the father started smiling again. He had his joy back. Then they established a bond.

‍Chris Ulmer: Two years after she emailed me that we kept in contact, and I said if you ever want to tell your story let me know. I know it’s kind of overwhelming sharing your story with millions of people but I’d be so happy to come to Tijuana and interview you. She finally reached out to me two years after that initial email and she asked if I would come down and tell their story. She didn’t know this, but I read on her Facebook page that they were trying to raise the funds for a wheelchair-accessible van, because he’d been stuck in his bedroom for seven months … or seven years, I’m sorry, this is seven years since his TBI. And the roads on Tijuana, you can’t just go outside, it’s all hilly. He’s been stuck in his house for seven years.

‍Chris Ulmer: Well, we went, we filmed the interview, and then I edited it, and at the very end of it I filmed a 30-second clip just facing my camera at myself and I said, “Everybody, we have this incredible opportunity tonight. They’re raising money for a wheelchair-accessible van and we could give them access to their community.” Within one day we raised over 50 000 bucks, and they’re sending me pictures now. They got the van in January and they’re sending me selfies out at the bar, he’s having a beer, it’s the greatest thing. So not only can we make an impact socially, but through crowdfunding, we have such an amazing community, we can really make an individual impact with a lot of the families we interview.

‍Jay Ruderman: You are perhaps one of the most positive people that I’ve met. You just exude this positivity. How do you deal with … like I know when you first started this project you were thinking about turning it into a book and you were turned down by 50 publishers. How’d you deal with that? How did you take that from there and say I’m going to keep going?

‍Chris Ulmer: This might be my own foolishness, but so far it has worked out for me. Whenever somebody tells me, “That’s not a good idea,” or, “That’s wrong,” in my mind I think well, that person’s a fool. For example, when the book publishers turned me down, I couldn’t believe it. I couldn’t believe what a golden opportunity they were wasting. I didn’t understand how they didn’t see it the same way I did. Well, what happened was our videos got popular. We now have this community of 4 million people, and now we have these book publishers contacting us, and I’m not responding to the emails, because these videos … one video we do has more views than a whole book we worked on for years would have in sales. What’s the point of having a book now?

‍Chris Ulmer: I think positivity … you have to be convinced of it, and you have to work at it, but you have to almost believe that it can’t not work out for you. I know that I’m very fortunate that it has worked out for me and that’s not the case for everybody, but even when it hadn’t worked out, before everything got to the level it was, I would always say to myself would I rather go to my grave depressed and cynical about the world or would I rather go to my grave as a foolish optimist? I thought, you know, even if I’m a foolish optimist I’ll be smiling, so I decided for that.

‍Chris Ulmer: With the trajectory of our social media we’re accumulating about a million-and-a-half followers across all our platforms every year. The trajectory has been exponential. If this exponential rate of growth continues I see in two, three years we have 10 million followers across social media. Then also I have a dream, a goal, of being on network television and employing actors with disabilities for parts and not having the show be about disability. You know, there’ll be education on disability, but we’re creating a children’s show currently where it’s a show about learning and adventure and understanding how to function together as a community. When we do that we’ll introduce our youth to disability at an early age. I think that’s the most important thing. Introducing the topic of disability when children are young, so it enters their realm of normalcy and it’s not seen as something to fear.

‍Jay Ruderman: Chris, I really want to thank you for your leadership, because you took an idea, you took a lot of chances, you stayed positive, you kept with it, you’ve really had success, you’ve exposed a community that’s part of our humanity but may not have been visible to everyone, so, you’ve done a lot for inclusion in our society. I wish you to go from success to success. Chris, I consider you a leader for disability inclusion in the digital age and I hope to see more and more of your work in the future. I hope that it expands and you get your success on television and an even larger audience.

‍Chris Ulmer: Thank you Jay, that means so much to me coming from you, it’s a great honor.

‍Jay Ruderman: Like you say in your videos, although we are all very much diverse, we have so much in common. Thank you for being with me today.

‍Announcer: All-Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities, in all aspects of society. You can find All-Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to RudermanFoundation.org/AllInclusive. Have an idea for a podcast? Be sure to tweet @jruderman.

Jay Ruderman: Leader in baseball, champion for inclusion, ambassador for diversity and social responsibility, our guest today is the main advocate of the latest Major League Baseball groundbreaking change, from the disabled list to the injured list, and my personal hero, Billy Bean.

‍Announcer: All-Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

‍Jay Ruderman: Hi, and welcome to All-Inclusive. I’m your host, Jay Ruderman. It’s wonderful to be joined today by Billy Bean, the vice-president and special assistant to the commissioner for Major League Baseball, Rob Manfred. He’s also the vice-president of Social Responsibility and Inclusion at Major League Baseball.

‍Jay Ruderman: Mr. Bean handles anti-bullying efforts and continues to develop strategies with a focus on the lesbian, gay, bisexual, and transgendered community. From 1987 to 1995 Mr. Bean played for the Detroit Tigers, Los Angeles Dodgers, and the San Diego Padres. Welcome Billy and thank you for joining me today. Tell us a little bit about who you are, how you got started in Major League Baseball as a player, and your personal journey.

Billy Bean: Well it’s a pleasure to be here, and I appreciate all the work that you and your foundation do. My name is Billy Bean, and I’m currently vice-president and special assistant to Commissioner Rob Manfred of Major League Baseball. But at one time I was just a little-leaguer, seven years old, introduced to baseball, and was able to navigate my way somehow, all the way through high school, and got offers to play in college, which I thought would be the peak of my baseball career, and then got drafted a couple of times. I was in the big leagues before my 22nd birthday and played six years in the major leagues.

‍Billy Bean: And during that time, I was really struggling with an internal dialogue that I did not really understand at the time. I grew up in a very conservative military household, my dad, my stepfather, the only father I’ve ever known, was in the Marine Corps and was a police officer. I was the oldest of six kids, and I think made to be the example for my siblings, and five boys, and him wanting us to be tough, and men.

‍Billy Bean: And so every image or conversation that I heard about the subject that I was struggling with, and that was my sexual orientation, I wasn’t sure what it meant to be gay. I’d never talked to anybody that was, my parents never introduced me to someone who said that they were, I never saw anybody on TV that I could relate to, and it wasn’t until I actually met somebody, it was in my fourth year in the major leagues, that I started to understand that I was in a really difficult spot.

‍Billy Bean: The one thing that I think a lot of people who have never lived or walked through that journey of trying to understand your sexual orientation in a world that is not supportive of being LGBT, that was in the 80s and early 90s, I just thought if I never did it, it wouldn’t be true.

‍Billy Bean: What happened was I tried to live a double life, and I was living secretively, and my partner died of HIV-related causes on the night before what was to be my last season in the majors. And I was devastated by loss of my partner, my only person I ever was honest with, really in the whole world at that time, kind of alienated myself, I didn’t have the confidence to tell my family. I loved my parents, but I believed everything my dad ever said about gay people, and I thought that he would think that about me, and I did not want to ever have that look into his eyes. And I knew I would disappoint my mother, and it just seemed easier to be away from them, and to remain the golden child who played in the big leagues, and just not see them anymore.

‍Jay Ruderman: I wanted to express my condolences for the loss of your partner at the time, and also for the separation from your family, which I’m sure was an excruciating time for you, and probably for them. And the whole journey that you went through, which was so important, but I’m sure an extremely difficult journey.

‍Billy Bean: You know I held up my responsibility, I finished my last year, but I knew inside that I wasn’t going to stick around. I gave up on myself, I gave up on my family, I walked away from baseball, and I didn’t have a plan B for a career or a job. Three years later, the person that was doing a nothing story about a Miami Beach restaurant had done her homework, and she knew who I was, she knew I had started to see somebody, and she wanted to write the truth.

‍Billy Bean: And I didn’t think anybody would care, I had just recently told my parents, this was two-and-a-half years after my last game. Next thing I know it was on the front page of the New York Times, and I was on national television. And it was because baseball had never had that connection. I think, if we’re talking about diversity, what was comfortable for athletes in the sports world was people of color, and that’s it.

Billy Bean: For someone like Sandy Koufax, I remember … I was raised in a religious environment at home, but people saying, “He’s Jewish,” in a way that was enamored by his own community, because they hadn’t seen as many images of their own, you know what I mean? And he was this amazing, you know, he’s on Mount Rushmore of greatness. And so, when people started to see something that they can align in, it creates interest. And there was just no representation for people in the LGBT community, even in sports.

‍Billy Bean: I didn’t understand why people thought it was interesting, I was just afraid that I would be humiliated because I made some really bad choices. I didn’t go to my partner’s funeral, because I had a game that day, I couldn’t figure out a way to not go to the park. I felt devastated by some of those choices, I lied to my family for years. I just felt like it’d be better if I just started over somewhere.

‍Billy Bean: And so this attention about that started to bring back all of that stuff that I had sort of hidden away. I just went off the grid after being a player, where every single day they know where you are. And I learned a very quick lesson that there’s a lot of people out there that need some leadership, and I needed to stop feeling sorry for myself and get over it.

‍Billy Bean: And I met, I was introduced by someone in the LGBT community to Judy Shepard, who was Matthew Shepard’s mother, and it was just about not even a year after he was murdered in Laramie, Wyoming. She just was so influential in my life, I told her, “I don’t know even what to say, how sorry I am for what happened to you and your family, and to Matthew,” and she was like, “Matthew would’ve been so excited to meet you, you would’ve been a hero to him.” And I felt unworthy of something like that being said to me, and asked her, “What do I do?” She was thrust into the same environment kind of as a role model for people, not of her own doing. And she could’ve easily said no, and mourned the loss of her son, but she decided to get out there, and be the face of a conversation. And she’s amazing, and I was inspired by that.

‍Billy Bean:And so I just stopped lying about myself, and I started saying yes to things that I was certain I would not know anything about or be influential or an influencer in any capacity. And over time I started to find my way, and get involved, and bullying prevention really started to speak to me, that I felt I was young enough to be out there with kids and encourage them to participate. That was more sort of what I did to sort of heal my past, it wasn’t a vocation, it was just somewhere, everywhere I could get connected and worked around some people that started some foundations that were really amazing.

‍Jay Ruderman: It’s my understanding that you are one of the only professional baseball players in the MLB who has come out as being gay.

‍Billy Bean: Right.

‍Jay Ruderman: How did you go from this traumatic time of your life, where you decide you couldn’t reconcile being gay and being in the MLB, to coming back to MLB?

‍Billy Bean: Right. So exactly what you said, there’s been two players in 150 year history that have played in the major league, a player named Glen Burke and myself. Which speaks to the culture that young male athletes face in this type of situation. So, I was away from baseball for well over 10 years, I did not think, even up until 2013, that a person that was gay would ever have a place in baseball. I literally was perpetuating that, but I do think that the life experience that I had in that interim prepared me for a job that there was no definition for.

‍Billy Bean: And I wouldn’t be here today if it wasn’t for a few people that work in our labor relations department, in this office, that had the vision to say, “We have to expand this conversation, about fostering a more inclusive environment, a culture, workplace, messaging in the stadiums.” What we deem is funny, and for years and years, perpetuating stereotypes against women, perpetuating stereotypes against certain religious faiths, perpetuating stereotypes definitely against the LGBT community.

‍Billy Bean: I literally was working out on the west coast and I got a call that asked me if I would be interested in having a conversation, they wanted to ask me a few questions. And I did not know what the content of that was about, but Paul Mifsud, who’s a labor attorney who’s been here since 2000, just an amazing inspiration in my career now, when he hung up, he said, “Billy, this conversation is probably 12 or 13 years late.” Which really was like, “What does that mean?”

‍Billy Bean: Because I wrote a book in 2004, and I took the initiative and the liberty of challenging baseball, to take this opportunity to be better. And so, it’s been an interesting navigation. I have to say I think that, as a former player in this position, and understanding and taking advantage of the infrastructure that had been built by others here, long before me, I took this and ran with it, because I saw this might be the one chance my community gets, and I was going to lift up that conversation, that diversity conversation, and say the only reason we’re having this one is because of those conversations. And we’re going to take advantage of that.

‍Billy Bean: And so I tried to find that bridge with the players. The first thing I wanted them to know was this was not about me finding out who is what, or what your personal life, that’s none of my business. My job here is to help you understand the expectations, and how that is changing in the baseball world, for every stakeholder. In our clubhouse, in our front offices, for those who are pursuing for work, and the messaging for every fan that walks through that turnstile to feel connected and not alienated.

‍Jay Ruderman: What is your day today? You do a lot of traveling, you’re visiting the different major league parks around the country, you’re speaking with players, to management, what’s the core of your full-time position?

‍Billy Bean: I think Paul Mifsud came up the title Ambassador for Inclusion. Dan Halem, who is our deputy commissioner now and another amazing person to work for, because he wants baseball to be better, he sent me to speak to the general managers at the Annual GM meetings a few months into my first year here. And that really changed the game for what my job became about. It turned out that I had played with or against I think 26 or 27 of the managers in baseball at that time, in 2014, and I had deeper relationships than I remembered. There is a bond that a player that played … and I think once people started to hear that I wasn’t here to “woe is me, Billy Bean story”, it was about everyone else, a light went on, and people started to see, “this is good for us, this could be good.”

‍Billy Bean: And for the first time a former player was standing up in front of the players talking about something sensitive, but having come through the other side, that doesn’t mean everybody’s on board with inclusion and equality, and equity in the workplace, you have to work for that. And why this conversation today is important, because from 70 years ago when Jackie Robinson ran onto the field in Brooklyn, April 15, 1947, to the 60s Civil Rights Movement of Willie Mays, and Frank Robinson, and Hank Aaron, and our amazing heroes of that era, to my little conversation and expanding the conversation or our efforts to bring women into highest level positions in operations and ownership, to a conversation about being inclusive of people living with disabilities, or hiring active US Armed Forces members into high level positions, and not only presuming the diversity conversation in a limited conversation, you know?

‍Billy Bean: Pursuing the best, brightest, broadest candidates, regardless of the package that we walk into the room in, it’s about what is your skillset, and how can you be the best at this job. And that conversation, it takes time to earn those moments, and I’ve learned by being invited to all 30 clubs, in a long answer to your question, that there’s never been a mandate from this office that they have to listen to Billy Bean. I ask Commissioner Manfred to make sure that my job was about invitation, and so I feel like the onus is on me to be an example that the clubs want.

‍Announcer: You’re listening to All-Inclusive, with Jay Ruderman. You can learn more, view the show notes and transcripts at RudermanFoundation.org/All-Inclusive.

‍Jay Ruderman: Please remember to subscribe, rate, and review us wherever you’re listening.

‍Jay Ruderman: So I have to give a lot of credit to Major League Baseball. They have brought you into this position, that they have valued inclusion, and I think I remember hearing, correct me if I’m wrong, that more Americans attend a baseball game than any other sporting event in person during a year.

‍Billy Bean: Yes.

‍Jay Ruderman: So it’s a hugely impactful part of our society, and to have someone dedicated to talking about inclusion in parts of our society that it can be improved upon, and to understand the leadership role that celebrities and young athletes have is hugely important. Do you know, are other major league sports in this country, are they following the lead of Major League Baseball?

‍Billy Bean: I think every league understands the important of broadening its fan base. And sharing your values is the best way to grow your business, and because nowadays people do want to know what you stand for. You gotta be good, and I also think that the beauty of sports, and why it is starting to elevate in its important is it’s almost as if we are in public service, because consumers are willing to enjoy entertainment and stream it on their timeline, but sports, that live time, no tried and true sports fan is willing to wait to watch a World Series game on tape delay, you know what I mean? We gotta know, we gotta know now. And so, I think that is drawing more attention to us. It may not be for as long, but we have a chance to be important, and be meaningful. And I think that conversation now has gone outside the white lines and we have to show what we stand for within the community, as a national messaging with our advertising, or the companies that we choose to work with.

‍Jay Ruderman: So I want to talk about the disability community, because we know from statistics based on the United States Department of Labor, or the United Nations, US Census, that 20% of our population has some form of a disability, it makes it the largest minority group in the world, and the poorest minority group in the world. The Ruderman Family Foundation has been behind disability rights for decades, but a few years back we started to work on self-advocacy and bringing in people with and without disabilities to empower them to become better advocates for disability rights. And this group was called Link 20, to link them to the rest of the population, and that they’re 20% of the population. And I know that they reached out to Major League Baseball and to you to talk about the disabled list.

‍Jay Ruderman: For those non-baseball fans who are listening, when a player is hurt and unable to play, was put on the disabled list. And they came to you and said the correct term should be an injured list, because they’re injured, and they’re not permanently disabled. And we’re empowered as a disability community by being identified as being people with a disability. Can you just talk about that from your end, and how that happened? Because our experience as a foundation and I think the disability advocacy part of our society, usually change happens over a long period of time, and this happened really quickly.

‍Billy Bean: So the interesting part of my job is that I get a lot of correspondence for a wide range of topics that are mostly off the field. What was unique about the outreach from Link 20 was that I had been thinking about this for a long time. And baseball is under a lot of scrutiny for changes to game tempo, roster size … the reason a list like this is important is because these players are putting themselves out there as 100% every night, and when injuries happen you need to replace that player, so the team has enough people to play a game.

‍Billy Bean: And this is real life, it’s work, and it’s a job. So, the list that exemplified those who are unable to perform has always been a very important list, and so it’s referred to all the time. If we would’ve named it something else 50 years ago it would’ve been fine with the people, so it was just more of comfort, as opposed to an indictment against a certain segment of our community.

‍Billy Bean: And I think that baseball is expert at making the sport of baseball available to our fans, we are always trying to be better. And so, expecting these kinds of changes, as you mentioned they do take time. I am fortunate enough to be able to make suggestions at times to Commissioner Manfred on things that are happening in the world.

‍Billy Bean: What was interesting is that letter was written to both of us. And I think that that timing was fortuitous, because we had sort of conditioned ourselves for this desire to improve, there was no resistance, it was just timing. And part of that timing has to do with us being in good negotiation space with the players union. To me, of the five-and-a-half years I’ve been back in baseball this has been one of the most gratifying moments, because I felt like everybody was thinking clearly, and without bias. It was really about the work that we had done prior, and the logic, and the timeliness of the making a change that should’ve been made a long time ago.

‍Billy Bean: And it’s interesting how some people thought that we were being too progressive, and “why can’t you just leave things the way they are?” And those are hard, that’s hard for me to understand, and people don’t want to always try to get better.

‍Jay Ruderman: You obviously are in a very senior position, where your voice is heard, and this is a value that’s taken very seriously by Major League Baseball. So, I have to commend you and also the league for acting very quickly on this. But getting back to what you said before, because the DL has been around for so long, what type of negative feedback were you getting?

‍Billy Bean: I think it’s more about people being afraid of where we’re going to take the sport, if we start changing things that they’re just accustomed to, and not the actual understanding that we were under serving a segment of our community and our population, and it was time to change and stop doing that. And I appreciate the acknowledgement this commissioner has given me and many other people around him, an opportunity to share our opinion. And make no mistake, we better come armed with information, but I felt that I made an argument that was clear and understood by the work that we’ve been doing. We earned this moment by other work that we had been doing.

‍Billy Bean: Just the reminder of how important baseball is to people, it’s very humbling. I have a huge responsibility to the people that follow our sport. We have a chance to influence in a way that makes people feel better about themselves or might help them pick up a phone before they harm themselves. I can’t think of anything more important.

‍Billy Bean: You know last year the New York Yankees, on an off day, responded to a young girl that posted something about being bullied on Facebook, they did a beautiful little video in response to it. It provides hope.

‍Jay Ruderman: Well I really think that you have a very exciting position, at a time when things are changing very rapidly in our society. Yet we live in a time when, you mentioned mental health, and more and more players are talking about mental health, the stress to perform, not only on the field or on the stage, but with so many people providing instant feedback on social media, and criticism, has to be so difficult for a young player in their 20s or early 30s. And I know that the commissioner of the NBA has been very supportive of his players. I see this as an issue that probably will continue to grow, that players will need support.

‍Billy Bean: The Mental Health Initiative that we are working on right now is going to be included in all of our education outreach, just to, at the very onset, make sure every player knows what resources are there. And it’s up to our leaders in our operations department, the general managers and the assistant general managers, directors of player personnel, to communicate and socialize that it’s not an indictment.

‍Billy Bean: I remember, when you’re not sure you’re going to be in the starting lineup, you start to play out all these scenarios, and you create … it’s very stressful, because you want to succeed. You’re right there, and the way the players are analyzed now, with the degree of it, the scale has grown so much, there’s no other destination to go but to start to doubt or have uncertainty in your mind.

‍Billy Bean: So we need to, at the very least, talk about it. Because they want to be perfect too, you know? And every person has perfect in their hand, they can see what it is, and if we don’t measure up you start to create this situation where no one’s going to feel as good as they can be, or feel completely content, or self-assured.

‍Jay Ruderman: It’s such a pervasive issue in our society. The foundation does an award in my dad’s memory, the Morton Ruderman Award in Inclusion, this year we gave it to Michael Phelps. Michael Phelps is the most decorated Olympian of all times, and yet has talked about devastating mental health issues that he’s had to deal with.

‍Billy Bean: He will influence people to say, “If he’s okay, I’m okay too.” And just that can save a life.

‍Jay Ruderman: I really want to thank you, Billy, for joining me today. And thank you for the lead that you have played, and the Major League Baseball, towards diversity, and honoring diversity. Thank you for taking this lead on disability inclusion, and I think that you’ve played a central part, and I really want to thank you for that. I think that disability, which was often seen as a segregating issue, is now becoming empowering for a community, and people are proud of their disability and are proud of being part of society. And I think that Major League Baseball, with your leadership, and the Commissioner’s leadership, will continue to help this community become empowered and move forward, and become a very integral part of our society. So, thank you so much for your time today.

‍Billy Bean: My pleasure, thank you for all the work that you and your foundation do.

‍Jay Ruderman: Thank you.

‍Billy Bean: It’s inspiring.

‍Jay Ruderman: Thank you.

‍Announcer: All-Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities, in all aspects of society. You can find All-Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to RudermanFoundation.org/AllInclusive. Have an idea for a podcast? Be sure to tweet @jruderman.

Jay Ruderman: Perception, stigma, lack of exposure, all lead to exclusion of people with disabilities. When we change perception, shatter stigma, and enhance visibility, we can change the world.Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

‍Jay Ruderman: Hi, and welcome to All Inclusive. I’m your host, Jay Ruderman. Have you heard about the new National Disability Theatre? It’s a professional theater company aiming to change social policy and the nation’s narrative about what people with disabilities can do and can be exposed to. Today, we’re joined by its co-founder, Mickey Rowe, who is the first autistic actor to play Christopher Boone in the Tony Award-winning play, The Curious Incident of the Dog in the Night-Time, and one of the first autistic actors to play any autistic characters. He’s been featured in the New York Times, PBS, Teen Vogue, Huffington Post, and many more. These days, he’s making history as the co-founder of the National Disability Theatre. Hi, Mickey, and thank you for joining me today.

‍Mickey Rowe: Thank you so much for having me. It’s such an honor to be on the show.

‍Jay Ruderman: Welcome. So, tell me, why did you become an actor? And what have been some of your challenges in becoming an actor?

‍Mickey Rowe: Growing up and being on the spectrum, as someone who’s autistic, I had no friends, so I spent my lunch breaks and recesses really pacing the hallways not knowing who to talk to or how to talk to them, or how to make a friend. So, I was really completely alone in my own head. But, my grandmother had a subscription to Seattle Children’s Theater, a professional theater for young audiences, and whenever we’d get to go, when I was sitting in the dark theater watching a show, that was really the one place that I felt seen, and I felt silently heard. So, that is what inspired me to be an actor.

‍Mickey Rowe: All actors face challenges, but for me, specifically, in addition to being autistic, I’m legally blind. What that means for me is that I can see things and I can read 18 point font or large print, but I can’t read text that’s smaller than 18 point font. A big part of getting acting jobs, as you may know, are doing what’s called cold reads, where they hand you a script and you read it. In my experience, I found that often if I would request the accommodation of having a script enlarged to 18 point font or photocopied at 150% for me, theaters didn’t really understand what an accommodation was besides maybe a wheelchair ramp and they often were unwilling to make that accommodation, or it would fall through the cracks because they’d be busy, and so they would choose to just not reply to the email asking for a large script and not communicate again with you at all.

‍Mickey Rowe: So, that’s been a big challenge for me, and that’s part of the reason I decided to become more public about my disability, because I thought it would help me navigate those conversations.

‍Jay Ruderman: I don’t want to put you on the spot, but there’s a show on television called The Good Doctor in which the lead character plays a doctor with autism, but he himself is not autistic. How do you feel about that portrayal and what does it make you want to do as a result of it?

‍Mickey Rowe: Ideally I would love to see that role be played by a brilliant actor who had autism, and I think there are a lot of really great actors with autism out there. But I think another part of the conversation, and it’s a great show, and if you want to just be entertained watching a great TV show there’s nothing wrong with that, but I think another really important part of the conversation is that autism is so much more diverse than what we see represented on TV. When we see autism on TV, it’s almost always a genius, right? What do we call it? Someone who is a prodigy and a genius.

‍Mickey Rowe: A know lots of really smart autistic people, but no one who’s necessarily a genius to the level that it’s portrayed on TV. And it’s always portrayed as white male, as well, to be honest. I think that’s problematic, oftentimes, because when someone goes to get diagnosed with autism, you’re not necessarily going to the expert right away. You start with a pediatrician or a general practitioner, and the place that those people pick up their perceptions of what autism looks like is TV.

‍Mickey Rowe: So, I think the fact that autism is always represented the same way on TV, that’s one of the reasons, I believe, why women with autism are so under-diagnosed, because it’s not what the pediatricians and general practitioners are seeing on TV, so they’re not expecting that, and that’s not what they … They don’t think to refer you to an autism expert.

‍Jay Ruderman: Well, listen, I mean, Hollywood and popular entertainment definitely has an impact on stigma and how people with disabilities are perceived in society. And many of us in the community know that whereas people with disabilities are 20% of the population, they are not authentically portrayed on screen. And we know that in the last 30 years that half the men that have won the Best Male Oscar have won for playing a disability. So, obviously, Hollywood wants to see disability, but not necessarily by actors with disabilities.

‍Jay Ruderman: Yet, you know, there are shows, like Speechless on ABC, where the producer and showrunner, Scott Silveri, wanted a lead character with cerebral palsy and was able to find Micah Fowler, and Micah’s the star of the show. So-

‍Mickey Rowe: And one of our advisory company members, as well, Micah is.

‍Jay Ruderman: Yeah. He’s great.Mickey Rowe He’s a great guy.

‍Jay Ruderman: He’s great. So, why don’t you tell me about the process, what led you from becoming an actor to a self-advocate? How did that process begin?

‍Mickey Rowe: Well, you really have to be a self-advocate, right now, as a person with a developmental disability, because you have to go above and beyond to prove that you are professional and that you can do the job. But what really, really, really, I can’t emphasize this enough, more than anything else, gave me the confidence and the tools that I needed to become an advocate for myself were the Ruderman white papers. Really, if it hadn’t been for the Ruderman white papers, I would have never been cast in The Curious Incident of the Dog in the Night-Time, and National Disability Theatre wouldn’t exist right now. And I know that’s true for so many people my age pursuing careers in the arts and media. The Ruderman white papers are really what has inspired change, and also given me the tools that I needed to advocate for change.

‍Jay Ruderman: I want to thank you for that, because what we were looking for is to tell the story of discrimination of actors with disabilities, and we know that 95% of the actors that we see on screen playing the role of a disability, less than 5% of them have a disability.

‍Mickey Rowe: Absolutely.

‍Jay Ruderman: Are you concerned at all, by through your advocacy, being black-balled by the industry and being seen as problematic? Is that something that is a concern to you? Or is that an old-fashioned attitude that now activism is such an integral part of life that it’s just accepted?

‍Mickey Rowe: You know, that’s always a concern. There are always people who, when they receive helpful critique, and critique that’s supposed to be positive, and helping everyone move forward in a better way, there’s always going to be people who receive that by being defensive. And I think those companies just aren’t the companies, necessarily, that you would want to be working for. And also, those companies probably wouldn’t have hired you in the first place, no matter what. They would have already discriminated against you, I think, even if you hadn’t been advocated for yourself.

‍Mickey Rowe: I think what’s really important for people with disabilities to know is that if there are companies that don’t seem like they are going to be able to work there, or certain companies that don’t seem like they’re on the same brainwave with you, that’s not the end of the world, and there are just as many really wonderful companies out there who are excited about inclusion and excited about moving forward and including people with disabilities. They might just not necessarily know how to do that on their own, or have the tools to do that, or they might need someone to hold their hand and guide them and walk them through that a little bit.

‍Mickey Rowe: So, I think young people with disabilities who are trying to figure out how to navigate advocating for themselves versus being excluded for advocating for themselves, just know that you have to find the right companies and the right partners that are going to appreciate your help, and appreciate you holding their hand and guiding them in how to include people with disabilities.

‍Jay Ruderman: Having just returned from Hollywood a few days ago, and having watched the latest Oscars presentation, it’s clear that diversity is part of the overall conversation in the entertainment industry. And diversity has really propelled different minority groups to the forefront of the entertainment industry, with African-American, Asian, Hispanic, LGBTQ, and other minority groups. It still seems that disability is not being included in the diversity conversation.

Jay Ruderman: While it’s now seen as inauthentic to portray certain minority groups without actors who represent those minority groups, with disability, it’s still seen as great acting to act as someone who has a disability, even if you’re able-bodied. So, I don’t know, what are your insights into that dichotomy?

‍Mickey Rowe: I mean, that is 100% true. Everything that you said is completely accurate and is true both for Hollywood as well as for theater as well. I think one of the things is that people with disabilities are often a little more isolated. It’s a little harder. We have to go a little more out of our way to form that community with each other. We might come from families where there’s no one else in our family who has a disability. It’s a little harder for us to come together and form that community.

‍Mickey Rowe: Also, disability in itself is so diverse. There are people with mobility disabilities and limb differences, right? Cerebral palsy and Down syndrome, autism. We are all so different and we all experience the world, and our challenges, so different. So, part of the mission of National Disability Theatre is to find ways to bring together the whole disability community, bring together lots and lots of people from the disability community, together all in one room, with professional funding, professional resources, to get to create as a group together, and really form that community, and form that culture. Also, show the world what that culture can look like, and how valuable that can be to include in the diversity conversation.

‍Jay Ruderman: So, I want to get into what the National Disability Theatre’s approach is, but before I would get into that, I would say that there are-

‍Mickey Rowe: Of course.

‍Jay Ruderman: … champions out there.

‍Mickey Rowe: Absolutely.

‍Jay Ruderman: I’m thinking of people like Scott Silveri, and Glen Mazzara, and Edgar Wright, and Ava DuVernay, and Janelle Monae. There are people who understand that disability is part of diversity. And even in the studios, I think there’s an educational process being done, that they understand that this is an emerging community that’s no longer going to be silent, that they need to consider, as part of the overall diversity conversation.

‍Mickey Rowe: Your work with Yale, as well, and Jessy Yates. Jessy just invited us out the other week to speak to children and faculty at the Yale School of Drama, because of your work with her and with them. And they’re another group I would add to that, that is now really becoming a strong advocate and understanding disability is a part of diversity as well, now.

‍Jay Ruderman: Right. Well, thank you, and we at the Ruderman Family Foundation decided to partner with Yale Drama School because they were on the same page on this issue in terms of including more actors with disabilities, and they are a prestigious organization that has impact in the world of entertainment.

‍Jay Ruderman: But, let’s switch gears a little bit to the National Disability Theatre’s approach to work. What makes it different? What is the unique aspect of this theater’s approach?

‍Mickey Rowe: Beyond just only employing people with disabilities. I think often the conversation about people with disabilities ends at actors. We talk about actors with disabilities, but often the stories are actually created long before the actors are ever invited into the process. So not only do we only cast actors with disabilities, but also, we only hire directors and designers with disabilities. So, everyone from the lighting designer to the person who wrote the script, they’re all going to have disabilities.

‍Mickey Rowe: What’s been hard for us to communicate to theaters, as we partner with them, is that this isn’t an act of charity, and that because you’re including people with disabilities, it doesn’t mean that the work is going to be of a lower level. These are all professional people who do this full-time as their living, and that you’re going to get the same quality you always have.

‍Mickey Rowe: But so, really, we hope to flip the script on whose voices belong where, and who are valued. So, we’re going to into these big, famous, regional theaters, that maybe haven’t been accessible, or haven’t included people with disabilities before, and we’re convincing them to allow us to take over their stages, and to say to their audiences, by doing incredible productions, “Look how amazing and professional and capable we are. People with disabilities are. And our voices belong on this stage, too.”

‍Mickey Rowe: Some of the people in that audience will be employers, and business owners, and leaders. So, their perception of people with disabilities will be changed. We partner with regional theaters across the country. So, this is really mutually beneficial for us, because we gain access to those theaters’ administrative infrastructure, and scene shops, which adds to our organizational strength, but also, then, those theaters get our diversity and programming as well. And we hold their hands on this journey.

‍Mickey Rowe: I think, often, people can be uncomfortable at first working alongside someone with a disability. So, by putting a whole bunch of people with disabilities into an existing regional theater as directors, and designers, and actors, over the period of a few months or a year, that theater is going to get more comfortable seeing these people as their peers. So, hopefully, when we leave, the theater will be thinking more inclusively and accessibly on their own. In that way, we get to plant the seeds of inclusion in major regional theaters around the country, until hopefully, one day, they won’t need us to hold their hands any more.

‍Announcer: You’re listening to All Inclusive with Jay Ruderman. You can learn more. View the show notes and transcripts at RudermanFoundation.org/AllInclusive.

‍Jay Ruderman: Please remember to subscribe, rate and review us wherever you are listening.

‍Jay Ruderman: First of all, I get the empowerment. The theater company run solely on employed people with disabilities as an empowering aspect of entertainment. But let me push back a little bit. Where is the inclusion model? I mean, isn’t the way to become more trenched in the entertainment industry is to be included in mainstream television, film, and not be an exclusionary group?

‍Mickey Rowe: There are already companies casting in that way already. I think about ACT Theatre here in Seattle has just cast a brilliant deaf actor as Romeo. Or I was just cast in Mozart in Amadeus coming up. So, often we will see theaters where one person with a disability is cast in the lead. It doesn’t always translate to people seeing that all people with disabilities are capable.

‍Mickey Rowe: A community that has really found a voice for themselves and been more accepted in popular culture has been the deaf community. It has done a really good job articulating why they’re valuable. I think a lot of that had to do with the Deaf West Theater Company, which had a really similar model to us, producing work with only people from the deaf community. That’s been really powerful in creating that inclusion more broadly.

‍Mickey Rowe: What I hear all the time from people is I hear that they want to cast people with disabilities, but don’t think the talent is there. They don’t think there is someone with this disability who could play this role. What we want to do is we want to get as many people with disabilities as possible on stages in major theaters, getting that experience, and showing their chops, so that people don’t have that excuse any more. So that people can’t say, “There isn’t someone out there who’s talented enough.” We can point and say, “No, look, this person just played this role at this theater in our production, and they’re more than capable.” And there will be reviews and all sorts of things to back that up.

‍Jay Ruderman: So, actually, it’s a very interesting idea, and I’m glad you laid it out to us. I know that many of your partners, people that I am friendly with and that I know personally, are excellent actors. People like Maysoon Zayid, Alex Stroker, Danny Woodborough, and Micah Fowler, and many more. Maybe you can tell us about what are some of your upcoming projects?

‍Mickey Rowe: So, we are actually just about to announce that … Your listeners will be the first to hear it … We, in our first year, are partnering with two really exciting theaters. In our first year we’re going to be partnering with La Jolla Playhouse in California, and The Goodman Theatre in Chicago. And as part of this partnership, we will be creating and commissioning two new plays, both written by playwrights with disabilities, for a cast of actors with disabilities, and the productions will be directed and designed by people with disabilities.

‍Mickey Rowe: One of the productions will be created just with La Jolla Playhouse, and then the other production will be a co-production with both La Jolla Playhouse and The Goodman Theatre, specifically for those two theaters first. What’s really exciting about this partnership for us is that National Disability Theatre is going to be the artists in residence at La Jolla Playhouse for a year, and we’ll get to work really closely with their design shop to rethink audience access services.

‍Mickey Rowe: So, our goal for our theater company is that instead of audience accessibility being an add-on that comes at the end of the design process, that certain audience members have to opt-in to or ask for, that our whole production will be accessible to everyone from the start. So, captioning isn’t a separate add-on but is integrated artistically, and directly, into the projection designs and the set design. And audio description can be integrated directly into the sound design.

‍Mickey Rowe: So, not only is this more satisfying for those people who use these services, but it’s also more affordable, and we think that modeling these accommodations for all of our audience members, not just those who need it, is an important educational tool.

‍Jay Ruderman: It sounds very exciting. You’re going to start in regional theaters, and my sense is that your plan is to end up in New York, on Broadway, and really challenge the national theater culture to really take a serious look at this. Is there anyone from the entertainment industry that’s really gotten behind this yet? Or are you more at the beginning stage of this whole process?

‍Mickey Rowe: Right now, we are mostly just talking with producers at regional theaters. A big part of Talleri and my job every day is hoping on the phone and taking meetings with regional producers across the country, theater producers across the country, and understanding what their needs are, what they’re excited about, and then trying to sell inclusion to them, and sell our model to them as something that would be really exciting for their audience members, and affordable.

‍Mickey Rowe: When we were at Yale, one thing that Talleri, our co-executive director said that I thought was so interesting, is that often theaters get scared when they hear accessibility because they think that it’s going to cost a lot of money. And sometimes that can definitely be true. So, what we try to educate these theaters on is that if you’re thinking about accessibility and inclusion right from the start, then it doesn’t necessarily cost more money, because you are already using things like projectors, and microphones, and audio description, and all these things that make something accessible, you have those tools already. If we creatively think about how we use those right from the start, then all it takes is creativity, and not necessarily more money than you’re used to spending.

‍Jay Ruderman: You have this company that’s committed to these productions. I assume that at the same time, since I know many of these actors, they’re also auditioning and acting in more mainstream productions.

‍Mickey Rowe: Right. So, our advisory company members definitely get the right to first refusal for any role that they would like in our shows. But we have a huge list that we have accumulated of hundreds and hundreds of really talented professional actors with disabilities, who we don’t necessarily know well enough to have as advisory company members, but we have hundreds and hundreds of actors with disabilities at our disposal that can audition for these theaters.

‍Mickey Rowe: As well, we hope to work with really wonderful agents, like Gail Ford Williamson in LA, who can help us to cast our productions with professional actors with disabilities.

‍Jay Ruderman:Where’s the pipeline coming from? You’re a regional person some place in the United States, you’re an actor with a disability, you want to become part of this National Disability Theatre, one of the productions. How do you access this talent pool?

‍Mickey Rowe: Well, luckily for National Disability Theatre, because of our website and because of some of the press we’ve gotten, we have a lot of them reaching out directly to us. But what I would say for a company that doesn’t necessarily have that resource, if a director or a company is thinking about including people with disabilities, and doesn’t know where to find them, I would say reach out to the community. Reach out to people like National Disability Theatre who can connect you with the talent, or Gregg Mozgala who can connect you with the talent, or agents like Gail Ford Williamson. There are a lot of resources out there, and oftentimes if you’re worried about finding the talent, all you have to do is reach out to an existing company that’s a part of the community, and they can help guide you to where that talent is.

‍Mickey Rowe: I think that’s another reason why it’s really important for theaters to be able to see a whole company made up of people with disabilities, because when you go and see a show and every single person in that show has a disability, and they were all completely talented professional actors, that helps to dispel the myth that the talent isn’t there, and that there aren’t that many actors with disabilities.

‍Jay Ruderman: If our listeners want to learn more about National Disability Theatres, how do they access the website, and find out about what you’re doing?

Mickey Rowe: They can go to www.NationalDisabilityTheatre.org, is our website.

‍Jay Ruderman: Thank you, Mickey, for joining us today. I really think that this project, the National Disability Theatre’s, work will be extremely impactful in breaking down stigma about actors with disabilities by making them visible in theater productions, and also inspiring the next crop of young actors who may see themselves on stage and say, “I can do this, because I’m seeing someone just like me up on stage.”

‍Jay Ruderman: I wish you a tremendous amount of success. Look forward to seeing one of your productions, and I look forward to seeing you on Broadway or in LA.

‍Mickey Rowe: Thank you so much, Jay.

‍Jay Ruderman: Thank you very much. Thanks for taking the time to join us today.

‍Mickey Rowe: It was great chatting with you.

‍Jay Ruderman: Thanks. Be well.Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts or to learn more, go to RudermanFoundation.org/All Inclusive. Have an idea for a podcast? Be sure to Tweet @JayRuderman.

Jay Ruderman: Did your parents ever tell you, you could be anything you want as long as you’re a doctor? We all recognize the power of the white jacket, respected professionals with the power to heal. The medical community recognizes the need for diversity and doctors today come from different ethnicities, races, communities, and yet disability is often excluded it’s time. This often overlooked aspect of medicine is examined. I can’t think of a better interviewee than Dr. Cheri Blauwet to do just that.

‍Announcer: All Inclusive. A podcast on inclusion, innovation and social justice with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host, Jay Ruderman. Dr. Blauwet, welcome to the show.

‍Cheri Blauwet: Thank you Jay.

‍Jay Ruderman: Dr. Blauwet it is a person with a physical disability and she’s a wheelchair user since a young age. She’s board certified in physical medicine and rehabilitation and sports medicine. She is an assistant professor of PM&R at Harvard Medical School and an attending physician at Brigham and Women’s Hospital and the Spaulding Rehabilitation Hospital. Dr. Blauwet, thank you for joining me today.

‍Cheri Blauwet: It’s a pleasure to be here.

‍Jay Ruderman: So your career has been very impressive. But I’d like to start from the beginning. You as a young girl in Iowa had a dream of becoming a doctor. Was disability a concern in this process?

‍Cheri Blauwet: You know, it’s a great question. Really my interest in medicine evolved fairly organically. As you noted, I did acquire a disability at a very young age and as I was moving through junior high and into high school, I was always fairly intrigued by healthcare settings. My mother worked in healthcare, so I would often go visit her at work for example. And I thought the hospital was a really exciting environment.

‍Cheri Blauwet: And then because of my own experiences as a young person with a disability, I also naturally interacted with health care environments more than many of my peers. And I think those two things really came together to help to develop my interest in medicine.

‍Cheri Blauwet: When I think about my early interests and how that then played into my plans moving into undergrad and furthering my education, I look back and I honestly think that I had almost a naivety regarding the fact that disability may have been a barrier. And when I think about that, I think it’s quite interesting. I do think that it’s somewhat of a product of being from that ADA generation, where as I was moving through my education, I simply, I did feel the liberty to kind of dream big regarding what I want it to be and where I wanted my to career to go. And also because I was involved in sport, I think that that also had a role in boosting my confidence and enabling me to see that I would be probably capable of engaging in a career in health care, being a physician.

‍Cheri Blauwet: And so for all of those reasons, I really just plowed ahead. And when you’re interested in medicine, there are so many boxes that you have to check with regards to coursework and getting good grades and taking the MCAT. And that was honestly really my focus. As I progressed through, I’m sure that there were moments in which my disability probably was perceived negatively and could have created barriers. But through that phase really kept my head down and tried to focus on the task at hand.

‍Jay Ruderman: So let’s go back to when you were a young girl with a disability and first being treated by doctors and nurses. What was your experience? Was there any patronizing involved, overdue sympathy or what was your experience like with, with the medical personnel where you were?

Cheri Blauwet: I definitely recall particularly like in adolescence and then moving into young adulthood medical encounters wherein you may be coming in with a simple issue. So say for example, an upper respiratory tract infection or a cold and sometimes they would be an overemphasis on your background disability or the provider potentially feeling as though that they needed to treat you differently because there was this background of a fairly significant disability that was somewhat distracting to the issue at hand. All of those things, I certainly remember taking into account and taking note of things that I would have wanted to see them be different and would want to do it differently in my own career.

‍Jay Ruderman: And what about today? Now that you’re an established physician working in hospitals, how do your colleagues react to you? Are you one of equals or are there issues that you deal with as a person with a disability who’s also a respected physician?

‍Cheri Blauwet: A lot of it does depend on environment. So for example, I have the fortune of having my primary appointment be in the Department of Physical Medicine and Rehabilitation at Harvard, which is based at Spaulding. Spaulding is a very enlightened place and most of the professionals there and most of my colleagues there have a fairly deep experience and interacting with the disability community. So things are very fluid and I certainly feel that in that environment that it’s very easy to assimilate and simply be it natural colleague with people and to think about our tasks at hand as professionals.

‍Cheri Blauwet: There are other environments in which although certainly you don’t feel as though there’s an overt sense of discrimination, there’s still a sense of being somewhat different and that inherent feeling as though one has to sort of, I guess you’d say over perform or overcompensate to fit in and just be part of the crowd. People in the sports medicine community don’t interact as regularly with people from the disability community. So in those environments I often find that it takes a little while. There’s often a period of just a little bit of natural hesitancy where people may not know exactly how to react to me being there and sometimes may overcompensate or worry about it even a little bit too much. It just takes a little bit more work to then build those personal relationships where people feel comfortable.

‍Jay Ruderman: And what about your patients? Can you talk a little bit about your interactions with patients, especially ones who are new that you haven’t interacted with before? What’s the reaction to you?

‍Cheri Blauwet: So I find that patients who are younger, anyone really, I would say in their 60s or younger, it’s very clear that most of those individuals, most of those patients have been in an environment before, interacted with people with disabilities or have seen people with disabilities be in professional roles. And so it’s not surprising for their doctor to open a door and wheel into the room. Then there’s really no reaction at all. It’s just a typical encounter.

‍Cheri Blauwet: Conversely, there are certainly other times where that door opens and there’s a moment in which you see a look of surprise in the patient’s eye or a look of confusion. In some circumstances, fairly rare, but it does happen, the patient will say something and say oh, I hadn’t expected my doctor to use a wheelchair or as they would say, often be in a wheelchair or something like that. And/or I’ve had just a few encounters where patients may say something that’s a bit more negative, like use language that isn’t does, I guess you could say what we would consider to be culturally appropriate or what I would prefer.

‍Cheri Blauwet: And I find that most of those interactions are typically with older patients. And I think that stems from just the rapid evolution of disability culture and awareness in our communities and the presence of people in professional roles. And I think a lot of those older patients, if they do react or do say something that’s in any way skeptical or negative, it typically comes from just the lack of awareness regarding our lack of ever having been around people with disabilities in professional roles.

‍Cheri Blauwet: So most of the time I certainly don’t take it personally or think that it’s anything malicious. I think usually it’s just ignorance honestly.

‍Jay Ruderman: So a recent report found that in medicine especially many students hide their disability out of a real fear of judgment bias and a skewed perception of their ability. Why do you feel that they have a fear to disclose a disability?

‍Cheri Blauwet: We think of our prototypical doctor as a typically strong white male who is able to have an incredible amount of physical prowess. And so I think that there’s still a perception out there that demonstrating anything that could be perceived as weakness will be detrimental to one’s career in medicine or their ability to move through medical school and then advance into residency and beyond. There’s certainly been a lot of work towards thinking about issues of just diversity inclusion and medicine in general, beginning at the trainee level.

‍Cheri Blauwet: I think there has come a broader recognition of disability as an element of that diversity. But a large number of initiatives have focused on issues related to gender or race ethnicity and have really left out disability to a large extent. So we’re sort of catching up in a way.

‍Jay Ruderman: Well, it seems like disability, even though people with disabilities are the largest minority in our country and our world population, they’re often the last to be considered part of a diverse group. And it’s only in recent years that there’s been a shift in attitudes of groups like the American Association of Medical Colleges to be more inclusive toward medical students and trainees with disabilities. What do you think is driving this evolution and what do you feel are the next steps?

‍Cheri Blauwet: I think that a lot of that shift has come out of the fact that I go back again to the ADA generation and this cadre of students that are coming through high school and then undergraduate education with a vision or a goal to have a career in medicine. And those numbers increasing and there being honestly pressure from the community of students who are saying, look I’ve seen examples, I’ve seen role models, I’ve seen people who have done this. Or even if I haven’t, I think I can do it and I’m coming and I’m applying and there needs to be a good reason why I wouldn’t be admitted. And if I am admitted then I need to be accommodated.

‍Cheri Blauwet: And so a lot of it I do think has been occurring in parallel with just a cultural shift that we see more broadly. And then also an increasing number of students who are coming to the table and wanting to apply.

|Jay Ruderman: So do you see yourself as part of a growing movement of doctors with disabilities who are starting to change that narrative by saying it’s a disservice to both the medical profession and patients to exclude doctors with disabilities in the medical field? Are you part of that? Can you give us an example of maybe a way that you’ve challenged the community?

‍Cheri Blauwet: Until now it’s only been more recently that we’ve started to talk about that and actually raise that as a problem and that it’s really sort of come out of the closet. And that’s I think been the results of what we’re initially informal coalitions of advocates that have now started to formalize a bit and bring together this conversation and be allies to one another, be mentors to younger people entering the profession and really to create more of a formal network.

‍Cheri Blauwet: One group that’s doing a lot on this topic is the University of Michigan. They have several advocates both on the clinical side as well as in research that have been doing quite a lot of work to both do studies that show okay, what is the current proportion of medical students with disabilities that are currently matriculated in our schools to provide a little bit of data to backup what’s the community is saying and then also thinking about how to elevate that conversation with use of social media and so on. And so it is starting to coalesce. It’s really only been quite recent.

‍Jay Ruderman: Well, that’s awesome and thank you for your leadership on that.

‍Announcer: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at rudermanfoundation.org/allinclusive. Please remember to subscribe, rate and review us wherever you are listening.

‍Jay Ruderman: You are an athlete. You’re a former Paralympic athlete in the sport of wheelchair racing and you competed for the United States team in three Paralympic Games, bringing home a total of seven Paralympic medals, which is very impressive. So congratulations. How did you start your career in athletics?

‍Cheri Blauwet: My evolution of an athlete occurred over many years when I was a young person growing up in the Midwest. And my first exposure to adaptive sport was through the sport of wheelchair basketball. I initially didn’t necessarily latch onto it or love it or think that it was something that I would stay involved in.

‍Cheri Blauwet: So my first hook was actually when I did discover some youth adaptive sports programs that were taking place in De Moines, Iowa, which was quite a drive from our family farm. And the way I discovered it was actually that our high school track coach saw a wheelchair racing exhibition event at the Iowa State high school track meet. He came back to school and told me that he had seen this and that he had been exposed to it and he encouraged me to try out for the track team the following year.

‍Cheri Blauwet: And initially I completely blew him off and said, well that’s great coach, but I don’t play sports. I’m not really interested. But he was thankfully very persistent and being from a small community, of course everyone knows everybody and he was able to get other people in the community to also try to cajole me into going out for the team.

‍Cheri Blauwet: So the following year I joined our high school’s track and field team. Of course I was the only student with a disability. And I went to practice and got a uniform. And of course this coach worked very hard to make it an inclusive experience. He would give me drills and training programs. But the reality was that I was the only athlete competing in most of those events. So I was about, again, about ready to throw in the towel. But at the end of that season we went to the state track meet and I ran into and encountered three or four other adolescent girls who are also competing in the sport of wheelchair racing and training with a wheelchair racing team in De Moines. And I was immediately intrigued by wanting to get to know them and to be a part of their community and to have peers and other teenage girls my age who also had disabilities, that that was actually the initial hook to stay involved.

‍Cheri Blauwet: And with that I started to get to know other athletes, get to know coaches with expertise in adaptive sport. And then I started to get really hooked and began to see myself as a true athlete with potential to compete and to have talent in the sport. So as I continued through high school I very slowly but surely acquired still. I ultimately got a racing wheelchair which was appropriate and custom made for me. And with all of those experiences and with just the day to day training, eventually started to get good at the sport and then ultimately evolved into competing at the Paralympic level.

Jay Ruderman: Well first of all, congratulations. I’m in awe of your success and it just goes to show you the story of your coach. Leadership and someone that’s willing to engage in real inclusion and support an athlete with disabilities. Do you remember the name of your coach?

‍Cheri Blauwet: Of course, yeah. His name is Jim Rosenblum and he’s still coaching both track and field and football.

‍Jay Ruderman: Yeah. Well congratulations to him because he was ahead of his time.

‍Cheri Blauwet: He was.

‍Jay Ruderman: And another thing that I’m completely in awe as a Bostonian is that you were a two time winner of both the Boston and New York City Marathon. So congratulations on that. And I’ll also point out that although you’re no longer competing, you’re joining the US Paralympic team as their doctor. Can you tell me about this role?

‍Cheri Blauwet: Just because you retire from the sport doesn’t it mean that you want to detach yourself from adaptive sports generally or the Paralympic movement. So immediately I started to look for ways to stay involved, to use my other professional roles to continue to contribute to the movement.

‍Cheri Blauwet: So I had the good fortune in 2010 of being able to join the medical committee for the International Paralympic Committee. That’s been extremely fulfilling because we are the group that really works with the International Paralympic Committee to think about overall health and wellbeing of the athletes. Everything from providing sports medicine services at the Paralympic Games to thinking more broadly about things like policies that we know will help to protect athlete health year round. And that’s been really an incredible journey and really has honestly given back to me as well and helped me launch my career in medicine and being able to speak as someone with expertise in what we would call Paralympic sports medicine, which is now its own niche and developing field.

‍Jay Ruderman: A way to combat stigma is through education. One of the things that the Ruderman Family Foundation has done in partnership with Massachusetts General Hospital is to train medical professionals, doctors, nurses, orderlies, so forth, how to treat a person with a disability when they present themselves. We first started focusing on autism, but now it’s expanded into other disabilities. Can you talk a little bit about the person with the disability comes into the hospital, you see them as a patient. The entire staff within the hospital, do they know how to, not to single out your institution, but do people in the medical establishment understand how to treat a person with a disability?

‍Cheri Blauwet: I think generally that many people in medicine, and if you think about it at all levels from people at the front desk in reception in a clinic to nursing staff to physicians, still a bit of, I guess you could say a hesitancy or even a fear around treating patients with disabilities. And I think that we see that at a few different levels. I think that first off, particularly in our Boston hospitals, to be frank, there are a lot of access challenges whether one has a physical disability or a sensory disability or an intellectual disability. Our hospitals frequently have fairly old infrastructure. They weren’t designed to be universal or to be welcoming towards people with disabilities. And so that is an issue and it’s one that does create challenges. And even challenges from the standpoint of knowing that a patient with a disability it may take a little of extra effort and that then can lead to more stigma, right?

‍Cheri Blauwet: So access and overall accessibility is one issue. And the other primary issue is just an overall lack of awareness around disability or people with disabilities as part of a minority community and the whole issue of disability culture and the identity around disability culture. And I do think a lot of that goes back to our training wherein people spend probably 90% of their time thinking about what medical diagnoses cause disability and how to fix those things rather than thinking about disability as part of the human experience.

‍Cheri Blauwet: And so again, when we think about the small amount of curriculum that’s applied towards things like how to best work with underrepresented minorities and issues related to cultural competency, it’s a very tiny portion of medical training and then disability within that as either nonexistent or an even smaller portion. It’s just hasn’t been addressed systematically to a large degree. There’s still a lot more work to do in that regard.

‍Jay Ruderman: I had a minor injury in sports. I wandered into an emergency room with a cane and was put into a wheelchair. And my experience was people stopped looking at me and started looking at the wheelchair or the cane. I don’t know if you’ve experienced that, how that makes you feel.

‍Cheri Blauwet: Yeah, I mean I think there’s still, look, we come from a history of centuries of a medical model wherein people are seen from the standpoint of what is your diagnoses? What is your illness or your injury and how do we treat that? And if we can’t treat that or if we’re identifying that someone is going to move forward in life as someone with a disability, then there’s still an underlying current that we have failed or that we have not returned to someone to their ultimate state of health perfection, I guess you could say.

‍Cheri Blauwet: And so that undercurrent, although even if it’s not talked about, it’s still where we come from and it’s a deeply entrenched part of the medical culture that we have to work very hard to move beyond. And we’re certainly doing better now than 10 years ago, but there’s a lot more work to be done. And that’s by I emphasize the importance of things like curriculum and medical schools, because we need to start influencing people’s biases at a very early point in their careers to then have a cadre and a generation of healthcare providers who see disability differently.

‍Jay Ruderman: Let me finally ask you, what more do you think could be done by the medical community, our listeners by us so the inclusion of doctors with disabilities becomes more regularized in our society?

‍Cheri Blauwet: I think there are several things that are that are really important next steps. I think the first is continuing to raise awareness regarding, as we discussed earlier, disability as an element of diversity. There’s so much talk about diversity inclusion in medicine in general right now. Even making this simple change to ensure that we always talk about disability as part of those initiatives would actually make a huge impact because a lot of resources are going into that topic right now. Things like scholarships and fellowships towards diverse applicants for example.

‍Cheri Blauwet: And just really making sure that when we talk about diversity, we always remember disability and really bring that conversation out of the closet and feel comfortable talking about it. That in and of itself will make a tremendous difference. And it will also elevate the conversation to continue to push us to bring disability out of the medical model.

‍Cheri Blauwet: And the other thing that I think is a little bit more technical but equally important is reducing our barriers to entry. Because right now what happens is that so many talented young students at the undergraduate level look at the process of applying to medical school and interviewing and ultimately matriculating into medical school and see so many levels of barriers that they simply decide not to try. And there can be simple things that would be helpful with that. Things like looking at technical standards in admissions policies, things like ensuring that when we talk about that process, that we make it very clear that applicants with disabilities are welcome. And I think that would also make a tremendous difference.

‍Jay Ruderman: Well, I think that we all have to do a better job of educating more professionals in the field and persistently acknowledge and accommodate medical professionals with disabilities. I want to thank you, Dr. Blauwet for your important insights and for many groundbreaking things that you’ve done in your life and will continue to do so. Thank you for being our guest today.

‍Jay Ruderman: I think the best way to end this important conversation is with the great phrase that’s trending is that disability does not mean inability. Thank you.

‍Cheri Blauwet: Yes. Thank you Jay.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.

Jay Ruderman: Hollywood takes pride in its recent campaigns for equality and inclusion. Actors of all colors, ethnicities, and genders. So how come they still ignore 20 percent of the population? It’s time to talk about it.

Announcer: All Inclusive. A podcast on inclusion, innovation, and social justice with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host, Jay Ruderman, and today we will address one of Hollywood’s biggest mysteries, the lack of equal representation of people with disabilities, 20 percent of the US population. The Ruderman White Paper on employment of actors with disabilities in television found that 95 percent of top TV show characters with disabilities are played by non-disabled performers. We also found out that most networks don’t even audition actors with disabilities. Why is that? With us today is actor, comedian, and activist for the disability rights movement, Danny Woodburn. He played most famously Mickey Abbott on Seinfeld and he has appeared in more than 130 television shows and has made 28 film appearances to date. He’s also recognizable by his dwarfism.

‍Jay Ruderman: Danny, thank you for joining us today on All Inclusive.

‍Danny Woodburn: Thank you, Jay. Thanks for having me.

‍Jay Ruderman: So let’s start from the beginning. Tell us a little bit about your journey in Hollywood, how you got started and where you are today.

‍Danny Woodburn: We’re going back now almost 30 years…I’m in my 30th year in Los Angeles. Hollywood, I guess you can say. You know, when I was in college, I did a number of plays. I did regional theater. I did some off-Broadway stuff. I think when I was in college I felt like a big fish because I had time to establish myself. People got to know me, they got to know what I was capable of doing on stage and so I never felt like my dwarfism was an issue in terms of my casting, in college. So I come to Hollywood and I knew it was going to be some kind of an issue, but I didn’t really necessarily know to what degree. I did a lot of pounding on the pavement and I finally ended up with an agent who represented a lot of little people. Her name was Cora Lee Junior.

‍Danny Woodburn: Cora Lee was very old school. Every year in Variety she would put a big picture of all of her little people clients in order of height. It is a picture that I never participated in, but you know, that was sort of the way she sold everybody. I got a couple of jobs through her and then moved on to other things because I knew the kind of career she wanted me to have was not the kind of career I wanted to have. It was not. I didn’t want to be a sight gag. I didn’t want to mocked onscreen or laughed at. I wanted to be in on the joke as an actor. I wanted my characters to be three dimensional and not just there as a prop. As so many types of little people roles had been.

‍Danny Woodburn: So I think after about three years in town, I landed the Seinfeld gig and that jump-started my career as an actor. And not so much as a prop or costumed character or extra. With that success, I was able to give voice to my concerns when I got in the room. And a lot of times it was quite useful to say, “Yeah, I don’t want to do that, I don’t want to be called that. I don’t want to appear in that fashion.” I would say 70 percent of the time it was met with a positive response because I had been able to show what I could do on Seinfeld, and of course, I had been asked back. And so I was starting to get respect from my peers and not just as an actor with dwarfism, but as an actor.

‍Danny Woodburn: That for me was the pinnacle moment of change.

‍Jay Ruderman: So do you feel like your disability has been an obstacle in the entertainment business or do you think it’s benefited you?

‍Danny Woodburn: Well, I’m a character actor. So I have friends that are character actors who I know are given more opportunities than I am because I’m still seen as a particular type. I still get feedback, like I could never be a doctor. I could never be this. I could never be that. And I played every kind of role there is from lawmen to aide to the State Department to dad to truck drivers. I’ve run the gamut on as many possible different types of roles. But that is a struggle to get to those spots where I can secure those roles.

‍Danny Woodburn: So my audition opportunities are definitely not the same as another actor of my experience and my resume. That actor will receive I think far more opportunities to audition than I do. So I do think it’s a hindrance, but I also think it helped in terms of my recognizability factor.

‍Jay Ruderman: One of the things I’ve always been really impressed about you, Danny, is that you have been really outspoken in your advocacy for disability inclusion in Hollywood and wrote some pretty strong pieces. Some op-eds and some research. Were you ever afraid of being blackballed or pushed out of the entertainment industry because of your activism?

‍Danny Woodburn: Well, you know, I haven’t heard anything in terms of feedback yet, as far as the possibility of being turned down because I might be considered problematic in that sense. But I know it hasn’t helped with certain things. Back in 1999, I had seen a breakdown. A breakdown is when the roles come out for a project and they explain what the role is and you know, they get into the specifics of the role. And then agents see these roles and then submit their clients on these roles. So a breakdown came down, the Lord of the Rings, Peter Jackson’s Lord of the Rings trilogy. And the breakdown specifically described how tall each actor should be. And at the end of the breakdown, there was a statement saying no little people. And that really kind of bothered me because I feel like this mythology about those kinds of stories is born out of the actual interaction with actual little people in our history.

‍Danny Woodburn: So I made a bit of a stink. I wrote a letter to Peter Jackson back in ’99 and he wrote me back and he explained that they didn’t have a no little people policy, but they were doing a certain kind of technical thing. Anyways, as you can see, it didn’t come to fruition that any little people got any roles on screen, were recognized as little people in those roles. And as a result of my letter, I, Billy Barty and one other actor whose name escapes me were brought in to audition for that casting director because of that letter. So I don’t know if it helped me or hurt me back then. Peter Jackson’s never offered me a job in 20 years. So not to say that he would or wouldn’t have, but I feel like he owes it to the little people community to put little people on screen in a project since Lord of the Rings. I feel like he should make up for that lack of diversity within those three films.

‍Jay Ruderman: I know many actors with disabilities who are commercially successful and they’re activists also, but their activism is tempered by the fact that they have to work, they don’t want to get blackballed. And you seem to be a little bit more courageous in your activism. So for that, I want to just give you some credit. Because I think your voice is heard within the entertainment industry.

‍Danny Woodburn: Well, thank you. I need that. I try hard not to single anybody out necessarily, although I might single out of production, but I don’t necessarily attack the actor ever, that I can think of. Because I’m going to come across people all the time and as you and I know, the recent controversy around Bryan Cranston and his portrayal in The Upside of a person in a wheelchair, is something I’ve commented on and I would comment on it and I’ve argued against the argument that was made. And I’ve worked with Bryan and I know Bryan. I even had asked Bryan to do a video for our campaign, disability as diversity, a year and a half ago. So it was sort of odd to me that that relationship was still with those events and yet this particular decision was made and it wasn’t investigated enough in my view to understand the idea behind their argument. That it was a business decision.

‍Jay Ruderman: So let’s talk a little bit about the movie, The Upside in which Bryan Cranston plays a quadriplegic. And Bryan’s been interviewed and brought up some real concerns about playing a disability, about where is the line. I’m paraphrasing, but as a wealthy, straight, white person, what does that mean? He can’t play someone that’s gay or someone that’s poor? And he says that he’s all in favor of increased inclusion of people with disabilities in the entertainment field, but he’s sort of questioning what is acting and where is the line. And so I want to talk to you a little bit about that because it seems to me that in the overall popular entertainment industry, there are lines.

‍Jay Ruderman: You’re not going to see a white actor play a character of Martin Luther King. Or you’ve seen the emergence of a more powerful African-American community in Hollywood and the Asian community. Where is the disability and how do you see this issue? You know, should all roles depicting disability be played by actors with disabilities? What are your thoughts on this?

‍Danny Woodburn: We have to look at whether or not all things are equal. And currently they are not. As you had mentioned earlier, 95 percent of the roles depicting disability are not going to people with disability. So I think I would be okay with the argument that I’ve heard many times, that it’s acting. If there was not a business aspect to it. And there is a business aspect to it. There is a disparity for certain groups in trying to get employment and in trying to get an opportunity and in trying to even get an education in their field because of that disparity. So all things being equal, I would agree with Bryan. But we don’t live in that society yet and so until we do, we have to balance the playing field at least to the point of equality. I’m not saying we need to make X, Y and Z happen, but we do need to create an arena that is completely equal for all persons to have opportunity. And that does not exist.

‍Danny Woodburn: And my 30 years of experience in this business tells me that does not exist. I have seen it time and time again. I have heard quotes, I have experienced personal things with regard to that disparity, so I know it doesn’t exist and if you are going to take a role … I think if Hollywood would have said, “Okay, we’re going to take this role, this lead role from a person with a disability, but in return, we’re going to get five others back, a role that maybe didn’t necessarily have a disabled character in mind.” Or there’s no focus on the disability. Or we’re going to give those roles back because we know there’s a disparity. But that doesn’t happen. I can’t get on board with his argument at this point.

‍Jay Ruderman: I think that as a society, we’ve progressed in a place where it would be socially unacceptable for a Caucasian actor to play a role that was specifically for a black character or an Asian character, Hispanic character. Even at the Golden Globe recently, Sandra Oh, who was presenting was sort of mocking a few recent films in which a white actress had played an Asian character. And Emma Stone who was one of those actresses screamed out from the audience, “I’m sorry.” So I think there’s a realization of the power of authentic representation for African-American, Asian, Hispanic actors. I don’t see that yet with actors with disabilities. I don’t know if societies are there yet in terms of seeing people with disabilities as a distinct class. There just doesn’t seem to be equality there.

‍Jay Ruderman: I would side with you. I think it’s an issue of authentic representation when you have 20 percent of the population with some form of a disability, yet less than three percent of the roles in entertainment have an actor with disability. There’s something wrong in the industry. Maybe you can talk a little bit about from your own experience, what are some of the obstacles that you see that actors with disabilities face when auditioning for roles in film and TV?

‍Danny Woodburn: Let’s start with the very basic. Physical access to a possible place of employment or an interview. You know, Hollywood casting houses are oftentimes in older buildings on lots that are historic. The Columbia Pictures lot which is now the Sony lot. Buildings there from the early 1900s still standing. And sometimes those auditions are held up on the second story of one of these two story buildings and it’s all stairs. And this is not uncommon even outside the studio, you’re buying temporary places to audition people and they might just be in an old Hollywood bungalow, which I’ve gone to before or some other unique little office that’s above another establishment. But it’s on the second floor and the third floor, and you have to go up stairs. I’ve seen specifically written down, “There is no elevator access, don’t use the elevator. You have to go up in the building and up the stairs.” Or whatever it is, but I’ve seen this still and I see it a lot. And so right away we’re closing that door to anybody with a mobility disability who can’t necessarily use the stairs in quite the same way.

‍Danny Woodburn: And this came very true for me after I had a knee surgery that was corrective and I had an audition, oh, maybe a week or two later. But I wasn’t ready for stairs at the time and so I had to single myself out by calling the entire passing team down to the first floor into another room with all the video equipment and producers to come to an audition. And so that has separated me from the path and has made me some other. And you had mentioned earlier about recognizing disability in the same way that, let’s say color is recognized. And I’ve come up against this in the discussion of inclusion, which is when I question organizations about their inclusion initiatives being exclusive to people with disabilities. That becomes the rhetoric about what inclusion is. And when I asked some of these organizations, “Why aren’t you including people with disability?” they said, “We’re just focusing on the cultural aspects right now.”

Danny Woodburn: That tells me that they really don’t have an understanding of disability because there is a culture around disability and they’re just not aware of it. It might not have to do with skin color but it does have to do with a bond that is ingrained in people with disabilities who see each other and come across each other. There is a distinct connection. I have felt it in the people that I have worked with and met because we all have a joint understanding of what each of us is up against in society. And that rhetoric of inclusion, “inclusion,” that kind of talk gets moved into programs.

‍Danny Woodburn: It’s moved into benefiting those particular groups and continue to be exclusive. I’ve seen laws in the state of New York, a program that benefits contractors that are people of color or women and I called on this and I said, “Why isn’t there any kind of extension of that benefit to people with disability?” And the response is, “Well, if that person with a disability is a woman or is a person of color, then yes, it’s extended.” And I said, “Well, that does not have the inclusion aspect of this work.” And they’re in disagreement with me. And that becomes a whole other fight and they say to me, “There are no disparity studies.” And I say, “All you have to do is to open your eyes and that’s your study.”

‍Speaker 2: You’re listening to All Inclusive with Jay Ruderman. You can learn more. View the show notes and transcripts at Rudermanfoundation.org/allinclusive.

‍Jay Ruderman: Please remember to subscribe, rate, and review us wherever you are listening.

‍Jay Ruderman: Danny, I know that they’re in the past three decades, half of the men that have won the best actor Oscar have won for playing a disability. The mere fact is that Hollywood, the entertainment industry, the general public sees the portrayal of disability by an able-bodied actor as great acting. It wouldn’t be the same if a white actor put on a black face or dressed up as an Asian or Hispanic character. There’s something fundamental in our society that I think Hollywood is reflecting.

‍Jay Ruderman: The stories of disability are interesting, but we don’t want to see characters or actors with those disabilities portraying it. That’s a huge challenge to move beyond and I’m just curious as to your thoughts of how we can move beyond that. I mean, I know you’ve been engaged in this advocacy for quite a long time. You know a lot of people in the industry. You’ve talked to them. How do you overcome that hurdle?

‍Danny Woodburn: Well, you said it’s three decades. If you’re looking at the past three decades and if you go back to three decades ago and you look at the Marlee Matlin’s win for the Academy Award and how much flack she got because she happens to be deaf, playing a deaf character and the premise was that she should not have received that award. So not only do we award or reward those actors without disability portraying disability, but the ones that actually have the disability that portray it, we punish. So until we have an understanding that that’s not acceptable, that’s going to be part of the hurdle. That’s going to be part of the pushback and I think Marlee’s done a fine job of bringing attention to that over the years.

‍Danny Woodburn: As you were talking, I was thinking about some of the reasons that it’s not looked at in the same way as playing another ethnicity. It’s because I, Danny Woodburn, will never be black. I can never be a black person. However, I, Danny Woodburn, can lose my hearing. I can go blind. All these things can happen to me that put me in that percentage of people with disabilities, so I think that’s part of the obstacle there. That these are relatable things that actors could possibly experience. But we still have to just come back to the basics of opportunity and employment and the access to education and employment.

‍Danny Woodburn: If we come back to that and only that and stop making the argument about acting, and what acting is, that’s what we can get past this because it’s not about, yeah, I’m in agreement with you. It is acting. And you can act these characteristics. However, you are pushing out and not helping to move forward opportunities for those that are actually these people who you are portraying. So I don’t think we can argue about the acting aspect of it because I think that the argument will continue. Actors are very passionate about that.

‍Jay Ruderman: I think the issue of stigma is a huge issue also. When you have, especially on the small screen, but also on film, when you have a personal interaction through entertainment of a culture that you may not come in contact with, whether it’s African-American or Hispanic or Asian or disability. It tends to reduce the stigma, tends to change attitudes. And it makes a difference and I think that that’s why the entertainment business more than almost any other business has a responsibility to consider representation. Because they do really have an impact on societal attitudes.

‍Jay Ruderman: So as we enter into 2019, what’s the push? How can we as advocates begin to change this industry?

‍Danny Woodburn: Well, I think the real thing too, and you do this in spades, Jay, is to talk about it. To make sure that the disability community and advocates are present at every turn when these things occur. So you know, I’m watching the changes happen. I’m watching things start to move and watching the needle start to move. The SAG Actor performance disabilities committee just had a meeting yesterday and we do an annual watchdog report that basically tells us, through our own reporting what roles came out for people with disability and who was cast in those roles. So if we look at television, the disparity is tipping in our favor. There are more roles now in television that are cast as people with disability. More people with disability being cast in roles that are specific to the disability. Even though the other thing still exists.

‍Danny Woodburn: Film, on the other hand, is not moving as much. If at all. Still, it’s a larger number of portrayals of people with disability by able-bodied actors. But I just know the pages are longer, so that’s good. But at the same time, there are more than three networks of the jobs now. There’s endless amounts of platforms popping up and that’s creating opportunity. We talked about this very prominent aspect of location scouting. Talking to members of the Location Scouting Union or whoever that group is and educating them about how easy it is to create more access for actors with disability in their location scouting.

‍Danny Woodburn: So we have to sort of break out each possible obstacle individually and address it. That’s part of the thing. But you know, we’re also in the process of discovering too, even after 30 years, how do we address this? How do we address that? And so things like location scouting all of a sudden pop up. We’re always working on casting and producers and all of that sort of thing. But if we can create a fully accessible place of employment and not without much effort, then that’s part of the [inaudible 00:21:37].

‍Jay Ruderman: Well, Danny, I want to tell you, I do think that the takeaway here is authentic representation. And it’s an issue of representation and not exclusion. I want to thank you for all of your important work and advocacy and thank you for joining me today for this important discussion. You’re really one of my heroes and I think you’ve had tremendous impact on our society, especially in the entertainment industry.

‍Jay Ruderman: We all know that the entertainment industry has a responsibility to tell inclusive stories, to present all people, all parts of society. And I hope it will finally take steps towards auditioning and casting actors with disabilities to play characters both with and without disabilities. In this year of 2019, there’s no room for excuses. And we, you and I and others will make sure of that. So thank you for joining me today, Danny.

‍Danny Woodburn: And thank you for having me, Jay. I just wanted to add this because it speaks to your point. We get really excited about those authentic portrayals. If we look at a film like Crazy Rich Asians or Black Panther we get really excited about that kind of inclusivity. And so I think the more you and I get together and push the needle further, we can create that same excitement about that kind of inclusivity as well.

‍Jay Ruderman: Thank you.

Speaker 2: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to Rudermanfoundation.org/allinclusive.

Speaker 2: Have an idea for a podcast? Be sure to Tweet @JayRuderman.

Jay Ruderman: Experts in the field of mental health have announced that a college mental health crisis is plaguing the United States. Why it exists, and what should be done about it?

Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host, Jay Ruderman, and today I’m joined by Dr. Miriam Heyman, a senior program officer at the Ruderman Family Foundation, and author of our latest white paper, Mental Health in the Ivy League. Today we’ll be discussing college mental health. Popular notions of college depict these four years as the best times of our lives. College students are living away from home for the first time, and they gain an incredible amount of freedom and independence. They develop new friendships, new romances, many of which last a lifetime.

‍Jay Ruderman: And yet, experts in the field of mental health have announced that a college mental health crisis is plaguing the United States. Miriam and I will talk about this crisis, who it is impacting, why it exists, and what should be done about it. Miriam, welcome.

‍Dr. Miriam Heyman: Thank you.

‍Jay Ruderman: So, let’s start from the beginning. What is the college mental health crisis and why is it here now?

‍Dr. Miriam Heyman: We are seeing an epidemic of mental illness on college campuses across the country. According to national data, 40% of undergraduate students have felt so depressed within the past year that it’s been difficult for them to function, 10% have seriously considered suicide, and these numbers are higher than the numbers for kids and young adults of the same age who are not attending college.

‍Dr. Miriam Heyman: We’re seeing this for several reasons. First of all, anxiety overall is increasing throughout all age brackets and demographics in our country, and on college campuses in particular, more students are arriving to college with pre-existing conditions because we as a society are doing better at supporting students with mental illness in high school, so more of them are successfully completing high school and enrolling in college. But they’re coming to campus in need of support, and we are failing at providing that support.

‍Jay Ruderman: So, these statistics are really astounding. It sounds like college today is a real pressure cooker, and mental health is being impacted by the experience on college campuses. How are colleges and universities reacting to this crisis? What are they doing?

‍Dr. Miriam Heyman: So, the short answer to how are colleges reacting is that, not well. There is not an infrastructure on college campuses to support students with mental illness. The best-equipped colleges have about one clinician for every 1,000 students, and on larger schools, we’re seeing one clinician for every 2,000-4,000 students. So, there is not the infrastructure of support that students desperately need.

‍Dr. Miriam Heyman: The majority of college students who meet diagnostic criteria for mental illness, like depression or anxiety, do not receive any treatment. Virtually every college reports that there is a wait period before college students can access counseling services, and this has catastrophic consequences. 86% of college students who die by suicide never receive treatment for mental illness.

‍Jay Ruderman: One of the focuses on the white paper that you recently authored was the issue of a leave of absence. Talk a little bit about what is a leave of absence, and why is it relevant to this issue?

‍Dr. Miriam Heyman: So, the Americans with Disabilities Act prohibits discrimination on the basis of disability, and that includes physical and invisible disabilities like depression, anxiety, post-traumatic stress disorder, and others. And this makes it illegal for colleges to discriminate on the basis of mental illness or any other disability, and it also requires colleges to provide reasonable accommodations to students with disabilities, including mental illness.

‍Jay Ruderman: In other words, they don’t want to deal with the issue. They’d rather it be off the college campus and away from them, and not deal with the liability that the mental illness may bring to light. Can you talk about, without naming names, or … Any specific instances where this has really had very detrimental impacts on students who have been asked to take a leave?

Dr. Miriam Heyman: I think you’re right, that colleges are scared of the repercussions of potentially allowing students to stay on-campus. Specifically, they want to avoid suicide on campus and the liability that might come with that, or perhaps more relevantly, the negative PR that would accompany a suicide on campus. While that is understandable, a leave of absence has been implemented in a way that has resembled exclusion and discrimination.

‍Dr. Miriam Heyman: For example, colleges are imposing reentry criteria on students who take a leave of absence, and this criteria is often vague or impossible to accomplish. For example, colleges will require that a student demonstrate stability before returning by taking classes in another academic institution, and many students’ financial aid won’t transfer from the original school to the second academic institution. So, financially they are not able to meet that criteria, and thus they are prevented from ever coming back.

Dr. Miriam Heyman: Many leave of absence policies also include prohibitions against visiting campus while a student is on leave, meaning that if a student goes home to their families for a semester, and if that home is near the school, that that student cannot come, even to have a coffee or attend a sports game with their friends. So in those situations, they are compounding social isolation with existing mental health disability.

‍Jay Ruderman: Do you know of examples, through your studies, of students who have been asked to leave, that in your opinion this leave has led to suicide?

‍Dr. Miriam Heyman: There is a story from one of the Ivy League schools where a student, she died by suicide before taking a leave, and in her suicide note, she actually mentioned the restrictive leave of absence policies of that school. Her note said, “I don’t want to take a leave,” and I’m paraphrasing here, but, “I don’t want to take a leave because I don’t want to be forced to stay away from school in this type of restrictive way.” What she was referring to in particular was that that school, their policy specified a minimum length of time for a leave.

‍Dr. Miriam Heyman: This is problematic because trajectories of mental illness, and recovery, vary from one person to the next. A student, for example, who has a breakdown in November, and needs to go home, take the rest of the semester off, adjust their medication, that student might be healthy and ready to return in January, but then that school might say the minimum length for a leave of absence is one full semester, or perhaps even two. And in that case, the student would be forbidden from coming back until the following September. So, they’re at home without a sense of purpose, and also likely socially isolated.

‍Dr. Miriam Heyman: Yes, there are stories in the news where fears of this type of exclusion imposed in these umbrella ways through these policies that do not look at cases on a case-by-case basis have led to suicide.

‍Jay Ruderman: So let me put myself in the shoes of a university president or a dean. I want to keep the school safe, and I don’t want any of the other students who I’m responsible for to be hurt. How do you respond to those type of concerns?

‍Dr. Miriam Heyman: I would respond by saying I absolutely agree. Keeping students safe should and is the first priority of the school. But actually many of these restrictive or exclusionary policies, I think, decrease campus safety, and I’ll give you an example of that. Some schools, their policies state that community disruption is grounds for an involuntary leave. Community disruption is a very vague term that can be very broadly applied.

‍Dr. Miriam Heyman: An example of community disruption that actually has been brought to light in some of these high-profile cases is a student saying to his roommates, “I’m having suicidal thoughts. Please accompany me to the campus counseling center.” That is a help-seeking behavior. We want students to speak up when they need help and to not fear that that speaking up will be construed as community disruption and could result in unnecessary exclusion.

‍Dr. Miriam Heyman: We hear this a lot, anecdotally, that students are not seeking counseling services because they fear that they might be placed on a leave of absence if they go to the counseling center and get the help that they need.

‍Announcer: You’re listening to All Inclusive with Jay Ruderman. You can learn more, view the show notes and transcripts at RudermanFoundation.org/AllInclusive.

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‍Jay Ruderman: In a recent paper you authored, the Ruderman White Paper, you focused on Ivy League schools and their leave of absence policies. Why the Ivy League schools?

‍Dr. Miriam Heyman: Why the Ivy League schools? I think that this is a problem that is confronting the entire nation, the entire sector of higher education. Schools around the country are struggling with the mental health needs of their students, and basically they are failing to support their students. I think that the sector of higher education desperately needs some leadership, and the Ivy League schools are role models for the other schools in the country. So, I think that if the Ivy League schools take this criticism to heart, and reexamine their policies and rephrase them to communicate institutional commitment to supporting students with mental health disabilities, I think that other schools will follow.

‍Jay Ruderman: What would be your recommendations of policies that the schools could change to make the situation better?

‍Dr. Miriam Heyman: In the Ruderman White Paper on Mental Health in the Ivy League, we examined 15 indicators, or 15 characteristics of policies that, for better or for worse, communicate either a commitment to support or exclude students with mental health disabilities. None of the Ivy League schools received a score higher than a D+, so there is a lot of room for improvement here.

‍Dr. Miriam Heyman: Again, I would frame this as an opportunity for leadership. I would encourage the Ivy League schools to seize this opportunity and lead the entire nation in improvement. And I do recommend very specific changes. For example, out of the eight Ivy League schools, three of the policies currently prohibit students on leave from visiting campus. I would recommend removing that prohibition, enabling students to stay connected with their peers while they’re on leave.

‍Dr. Miriam Heyman: Four of the eight Ivy League schools specify minimum lengths of time for the leave. I would recommend eliminating this minimum length of time and encouraging students to come back when they are ready, and when they have documentation from a healthcare provider that supports their readiness to return, even if it’s not one full semester.

‍Dr. Miriam Heyman: Four of the policies do not communicate that students are entitled to accommodations that might reduce or eliminate the need for a leave. If a student is suffering from anxiety, things like a reduced course load might alleviate that anxiety, and that might be an option to explore first before putting a student on leave. But the policy should communicate that. I think that transparency is an essential buffer against discrimination, and schools should be very upfront about the support that students are entitled to receive.

‍Dr. Miriam Heyman: A fourth recommendation is a low-hanging piece of fruit. Most of the leave of absence policies do not identify someone on campus who can support students reentry. I mentioned, I think, that in a lot of case, the reentry criteria are very vague or ambiguous, and it’s important for students to know that there’s someone on campus they can contact who can help them answer questions they might have, and facilitate that process. What that does more broadly is to communicate that even though you’re at home for the semester, you are still a student of this school, and you’re still entitled to school-based supports. And I think it’s pretty straightforward for colleges to add the name or title of a liaison person for students who are on leave, and yet something so small will still go a long way in communicating their commitment to supporting their students.

‍Jay Ruderman: Let’s talk about the grading. Why give the schools grades? What impact does that have?

‍Dr. Miriam Heyman: I mentioned that no school scored higher than a D+. I think there was not so much variability in the grades. They were all in the D or F range. I think what I hope is that that communicates that this is a problem across the board. That this is something that schools, I think, are obligated to address from the perspective of social justice, civil rights, inclusion, and really every single school in the Ivy League, and I would venture to say every school outside of the Ivy League, has room for improvement here.

‍Jay Ruderman: What is the incentive of colleges and universities to make these changes? How does it benefit them?

‍Dr. Miriam Heyman: I’m delighted to say that the majority of the school newspapers have covered this research in their student paper, so I think that is very important to context for this national conversation. I absolutely think that schools have an incentive to make these changes. Schools benefit financially when their graduation rates increase, and supporting students is a, I think, foolproof way to increase your graduation rate.

‍Jay Ruderman: But it seems, at this point, that there’s been a defensive reaction by the schools, instead of a embracing, “We can do better on addressing mental health on college campuses.”

‍Dr. Miriam Heyman: I would agree with that. In all of the articles that have come out, the schools have either failed to provide an official comment, or have been critical of some element of the analysis of the paper. I would encourage them to step away from the defensive and work with us as partners. We would be happy to partner with the schools to suggest smaller and easier to implement changes, that they can make immediately, and then perhaps, over time, tackle some of the larger changes that we’d like to see, as well.

‍Jay Ruderman: Since the publication of the Ruderman White Paper on Mental Health in the Ivy League, have you had any contact from students and what has been their reaction to it?

‍Dr. Miriam Heyman: I’ve spoken with students who have been writing the articles for their school papers, and they are eager to bring this issue to the attention of their administrators. I know that the newspaper staff, and also student body presidents, have brought these findings to their administrators, have not yet heard what the reaction of the administrators has been, but I do hope that this research motivates college students to get involved and to speak out, and to also continue to speak up when they need help.

‍Dr. Miriam Heyman: I mean, I think part of our mission at the Foundation is to destigmatize mental illness and to make all people, college students and not, feel comfortable accessing help when they need it, and I hope that this contributes to that conversation as well.

‍Jay Ruderman: I hope so. In addition to the leave of absence policies that we’ve covered, what else do you think that schools … What steps should they take to improve the mental health crisis in the schools?

‍Dr. Miriam Heyman: Schools clearly need to build their infrastructure of support, expand the availibility of counseling services. I think all schools recognize that and are starting to take steps, but that will be a long process, because there is not nearly enough available counselors on campuses for students. And then, I think schools also should educate the entire school community about mental health.

Dr. Miriam Heyman: One event that we co-hosted, former governor Dukakis who’s now faculty member at a college, spoke about how he responds to struggling students with empathy. So, if a student sleeps late or fails to turn in an assignment, Governor Dukakis will approach that student and say, “Are you okay? Are you struggling? Do you need a referral for counseling or any other service?” As opposed to, I think, the traditional reaction from a professor would be, “That student is lazy. If you don’t come to a class, you’re going to fail.”

‍Dr. Miriam Heyman: I think that Governor Dukakis is perhaps a rare leader in that way, and I think that schools should train all students, resident advisors, and other students as well, and faculty members, to recognize the signs of mental illness, things like sleeping through class, not turning in assignments, and to not provide counseling services, it’s not the professor’s responsibility to do that, or the RA’s responsibility to do that, but they should be prepared to refer students to services.

‍Jay Ruderman: I think that it’s important to say that Governor, or now Professor Dukakis and his wife, Kitty, have been leaders on the issue of mental health and have been very outspoken about the importance of being open in addressing issues of mental health.

‍Dr. Miriam Heyman: Absolutely.

‍Jay Ruderman: Thank you, Miriam, for joining me today.

‍Dr. Miriam Heyman: Thank you.

‍Jay Ruderman: I hope that this podcast will encourage schools to prioritize mental health and wellbeing. Clearly there’s a lot of work that needs to happen, and bringing these issues to light is a critical first step.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman

Jay Ruderman: What if I told you that each week in America, a person is murdered in cold blood? What if I told you the murders are barely covered by the media? What if I told you that when covered, the media, general public and the law consistently makes excuses for these murders?

‍Announcer: All Inclusive. A podcast on inclusion, innovation and social justice with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host, Jay Ruderman, and on today’s show, we’ll address why the media, court system and the general public ignores the fact that approximately once a week, a person with a disability is murdered by their caregiver. Joining me for this discussion is the author of our recent white paper on this very subject, David Perry, who authored the Ruderman white paper on Media Coverage of the Murder of People with Disabilities by Their Caregivers. David is a senior academic advisor to the Department of History at the University of Minnesota. He is a widely distributed reporter covering disability rights at outlets like CNN, the Atlantic, the Washington Post and the Pacific Standard.

‍Jay Ruderman: He joined the Ruderman Family Foundation writing this alarming white paper and has been following this issue closely. David, thank you for joining us here today.

‍David Perry: Thank you so much for having me on.

‍Jay Ruderman: Let me ask you the first elephant in the room question. If this is such a widespread problem in America, if there’s so many people with disabilities that are being murdered by their caregivers, why is this given scant coverage by the media?

‍David Perry: I think there are two real answers to that and one of them is big and about bias about disability and not understanding disability as connecting, so in one case, the victim has autism and is a child. In another case, the victim could be elderly with any number of health conditions. In yet another case, it could be an adult who is still murdered by their caregiver, maybe even their parent. Maybe with cerebral palsy, maybe with physical disabilities. If you see disability as a collection of medical diagnoses, it’s easy for a reporter to not connect these stories and see them as part of a pattern. That’s obviously not how the Ruderman Family Foundation approaches disability or how the disability rights community approaches disability where we talk about identity, where we talk about connection. We talk about inclusion where these stories clearly come together.

‍David Perry: So that’s one problem is fundamental misunderstandings in the media about what disability is. The second problem, though, is that when these stories happen, the focus immediately, in almost every case, shifts towards hardship and empathy with the parents, empathy with the killers. It is horrific when a parent kills their child and the first question the media likes to answer is, “What could have driven them to this?” And that takes the reporter into a pathway to talk about hardship and pressure and stress and lack of support rather than really looking at the victim. So I think those two factors are what pulls each of these stories in their own direction rather than seeing this as a consistent national problem or even an international problem.

‍Jay Ruderman: So I experienced this a little bit different way, but my dad was sick with a disease called Alpha-1 antitrypsin for many, many years and it’s a disease that attacks the lungs and the liver and as time went on, he became more and more incapacitated and then he passed away and we were all very upset and it was traumatic, but there was also a sense of like, okay, well, the burden is now lifted on my mother. What factor does that play where people are identifying with the survivors and saying, “Well, they had to care for someone that was really not going to have much of a life. Maybe things are better off this way.” Do you think there’s a sense, in society, that that feeling exists?

‍David Perry: I do think so, but again, I think that when we start to dig into these stories, often it turns out that there’s enormous value in lives that don’t look like what we imagine a typical life to be, so that when you talk to people with cerebral palsy or when you talk to people with autism, they don’t say, “My life is a misery.” You know, my son is nonverbal, he has Down syndrome. When we communicate with him, you have to do a different kind of work to communicate with him, but it’s clear that there is immense joy in his life and in my life. There’s a whole … This will take us into a different topic, but there’s a whole conversation around assisted suicide and who gets advised, “Well your life is meaningless now,” and who gets lots of resources to support them as long as possible.

David Perry: These are difficult and important conversations about disability and value in life and we should absolutely have them, but in the context of murder, when we start to look at these stories, it’s pretty clear that we’re too quick to jump on this narrative of burden. We’re too quick to identify it with terminal illness. Autism is not a terminal condition. Cerebral palsy is not a terminal condition. Old age on itself is not a terminal condition and so we have to be very careful about that.

‍David Perry: Just as an example, the first story that I got involved with covering was the horrific murder of London McCabe, a young boy, autistic, whose mother threw him off the bridge in, I think 2014, in Oregon. Immediately the story was about, oh, that, that must have been such a burden on her. You know, how could a mother do this? She must have been terrible. But when you actually read about London McCabe, he liked to play with hats. He liked stuffed animals. He liked watching his parents kiss. There was a whole sort of narrative of him as a real, whole person, and that to me, as a journalist myself and also as a parent, I wanted to make sure we’re telling those stories. I want to make sure that we start by saying whatever was going on in the murderer’s head, and you know, we need to get there and the court system needs to get there, but we have to start by telling the story as best as we can of the victim themselves and not just erase them from their own narrative.

‍Jay Ruderman: Let’s back up for a second. What are the main findings? How are the police, the law enforcement authorities, the court system, handling these murders? Are they looking at them like a murder that’s a premeditated murder or are they looking at it as a sympathy killing?

‍David Perry: They’re much more likely to go into it with the assumption, in a disability case, that there’s sort of a justifiable explanation. And that doesn’t mean that they just say, “Oh, you killed your child. Go back home.” There is a court process it goes through, but people are likely to serve less time. They’re likely to be treated with sympathy by reporters, by police, by judges, by juries. Defense lawyers, I mean, their job is to represent their client in the best way possible and so defense lawyers immediately go for this kind of narrative. But journalists, it is not the job to simply regurgitate what defense lawyers tell them. Journalists have to dig in and every defense lawyer says exculpatory things about their client.

‍David Perry: A journalist is not supposed to do that, but often it’s very striking when you read the court transcripts or when you read reporting on these cases such as there was a Chicago killing of Alex Spourdalakis, autistic teenager. The defense lawyers and the prosecutors are kind of saying the same thing. “Oh, well, this must have been really hard on the mother,” on the killer, rather than starting from the idea that Alex Spourdalakis had a life and his life had value and whatever happens after that, whether it involves long prison terms or whether it involves treatment or any number of other kinds of ways in which any given case might play out, we have to start from the assumption that the victim’s life had value. That’s just not happening in the courts.

‍David Perry: I’m a journalist, so I’m not a criminologist and I do think one of my calls is for more criminologists to do kind of systematic study of these cases, but as a journalist I can just say I am not seeing journalists connect one killing to another to say there’s a pattern and I’m not seeing journalists talk to anyone who is disabled or even anyone who is not disabled, but somehow has expertise in disability issues. We just don’t see those kinds of voices put into these stories and that, to me, is just a basic kind of journalism 101 thing that we can and must fix.

Jay Ruderman: Right. So it seems like the overall statistic is pretty alarming. That every week in America, there is a person with disabilities get killed by their caretaker, but if I juxtapose this to a recent white paper that the Foundation did that came out with the statistics that first responders, police and fire fighters, EMTs, that they’re more likely to die by suicide than in the line of duty and that caught like wildfire and the media picked it up all over the country. Now, maybe there’s a difference between the identification that society has with first responders than they do with people with disabilities who are in the care of their loved ones, but just help me delve into this and why is this not catching on with journalists or law enforcement, why are they not seeing the trend here even though it’s been put to them very straightforward in the white paper?

‍David Perry: Most journalists are only going to cover one or two of these stories in their career and this is something that I think often the disability community is not sort of thinking about professional journalism issues, but these stories get covered by crime reporters in local communities. So they have certain kinds of ways in which they’ve been trained in the way that they cover these cases. They’re mostly going to cover one or two of them a year and they have not come into it, and this goes back to my first point about how we as a society understand disability. They do not come into these cases thinking of disabled people as an identity, as a constituency, as people who have voice, who talk for themselves instead of being talked over.

‍David Perry: If there’s a string of murders in a community of color or if there’s a string of murders, I was recently in Toronto, where there was a string of murders in the LGBT community in Toronto. A reporter is going to have the idea right from the beginning, “Oh, I should speak to community leaders and get their perspective on this.” Again, not as the only voice, but as a voice in the story, and that’s just not happening with disability. It really speaks to a fundamental issue in how journalists are or really are not trained to think about disability in their story. Every journalist in every beat might encounter disability somewhere along the way. So this points me towards kind of core issues of journalistic training that then become really crucial when we deal with what is literally a life and death story.

‍Jay Ruderman: Not so long ago, people with disabilities were institutionalized and segregated into separate housing and schooling and different workforces where they were being paid subminimum wage. Does all of that shape a society’s view of how people with disabilities should be, quote unquote, cared for as opposed to their right to be a full fledged member of society even though there are obvious visible differences? And I mean, I’m talking a big sort of stigma related question that I’m sure you’ve struggled with in terms of all of your reporting, but does it add up? Sometimes it feels like it’s not.

‍David Perry: Yeah. I mean, I’m also a historian, as you know, and I do think that everything in our kind of dominant culture pushes towards the objectification of people with disabilities in different ways. Whether it’s because of physical differences or like my son, because he doesn’t speak in typical ways, although he sure does communicate a lot in a lot of different ways or whether it’s because of people who have different kinds of mental illnesses as I’m recently discovering about my own brain and have been sort of closeted from, even from myself for a long time, because we’re worried about stigma. Everything in society pushes us as a dominant culture, to objectify. Sometimes very kindly, “Aw, he’s so cute, he’s so sweet,” even though it’s a 35 year old man with Down syndrome treated like a child, or sometimes very cruelly, through institutionalization or eugenics or violence or incarceration, but everything pushes us to focus on the caregiver rather than the person with disability themselves.

‍David Perry: Certainly in these murders, we see that constantly. The perspective shifts at once to the killer rather than to what we know about the victim

.Jay Ruderman: Your focus on this white paper and much of your other work has been on journalists and educating other journalists about reporting on disability. Maybe you could just talk for a second about what type of success you’ve found in that. How do you reach out to other journalists? How do you impact them? Are they paying attention to what you’re putting out there? What are your thoughts?

David Perry: I think we are in a great moment in the shift in terms of journalism and awareness of disability as identity. I certainly don’t take any credit for that, but I have observed it. I know you recently did a podcast on the straw ban and I think that was a great example of a place where the disability community surged forward and demanded to be part of this conversation and rapidly had pieces published by disabled folks across the media landscape. I’ve been publishing on it for a couple of years, but as this surge took over, I just stepped back and started sharing pieces, because I was so happy to see what was happening.

‍David Perry: I think that editors are increasingly aware that there are lots and lots of amazing disabled writers out there and are going to them to talk about these disability issues and so I’m very happy about that. I can tell you that when I talk to journalism students about disability, writing issues, they are very receptive to the message. I get almost no pushback when I say, “Hey, if you’re talking about a story about disability, because you’re a sports broadcaster or a weather broadcaster or a holiday feature broadcaster, whatever, maybe you should talk to disabled people if you’re writing about disability.” They say, “Oh, yeah, that makes sense.” That’s journalism 101.

‍David Perry: If I say don’t assume that people don’t have a voice just because they don’t talk in the way that you talk, they say, “Oh, yeah, that makes sense. I’m excited to hear that.” But someone has to tell them that message. Someone has to tell them that message in undergraduate and graduate journalism classes across the country and that effort hasn’t really started yet.

‍Jay Ruderman: Let’s get back to the subject matter of the white paper, about caregiver murders and now that we’re a year plus from the publication of the paper, has there been any progress made? And what’s the answer? How do we make progress on this issue and how do we get something that is really endemic in our country to really get more coverage and more sensitivity by the general public?

‍David Perry: I do think there has been some progress that’s been made. Often the first reporting on cases still continues to follow the old tropes, but then as the second day story or the second week story follows, I certainly get a reasonable number of queries from other reporters. I tend to refer them to the Autistic Self Advocacy Network. They have a great media team and they’re the voices that I want to see, but I see people reaching out for me. I track these stories very carefully and I see things getting better. I just was part of a big process in Australia where there was a mass murder. There was a terrible situation, which again, kind of the first coverage of the reporting followed the same pattern, but then the national media, the ABC, their Australian Broadcasting Corporation, said, “Wait a minute, we have to do better,” and again, they reached out to Australian disability advocates, Disabled Australians, and then also to me to sort of try to talk about this case and to put it in context and to do that kind of context work.

‍David Perry: That’s reassuring, not that these murders keep happening, that’s not reassuring, but that the coverage is better. We know something about how media around violence can cause contagion. Suicide contagion is very well documented that when a famous person commits suicide, more people kill themselves. We’re learning more and more, sadly, in this country about mass murder contagion where someone does a mass murder in a high school and other people think about doing that in their high school too.

‍David Perry: I think we have to be concerned about caregiver murder contagion. That when someone commits a murder and they get treated as a sympathetic victim rather than their victim as the victim, we know from court transcripts from other cases that other caregivers see those stories and think about them. So the stakes here are quite literally life and death and I’m glad we’re beginning to see a little bit of progress.

‍Jay Ruderman: Right. And thank you for your leadership and scholarship on this issue and your dedication to making it an issue and the Foundation’s partnership with you has been really important and impactful for us. I think you, David, for bringing such an important problem to the public’s attention and for joining me today. It’s important to mention that most caregivers do not kill people with disabilities, so I don’t want to throw all caregivers under the bus. That’s not the purpose of this broadcast or the white paper. If you would end with sort of a call to action, what would that be?

‍David Perry: I want every journalist who reports on anything related to disability, but especially in cases of violence, to talk to disabled leaders in their community as just a basic practice. In murder, in education, in everything. If you’re writing about disability, talk to your disabled leaders in your community.

‍Jay Ruderman: Good advice. Thank you, David Perry. It’s been a pleasure talking to you.

‍David Perry: You too, Jay. Thanks a lot.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman

Jay Ruderman: Suicide claims the lives of more than 120 Americans each day.‍

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Announcer: All Inclusive. A podcast on inclusion, innovation and social justice, with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host, Jay Ruderman and today we’re going to address the serious issue of suicide and mental health, specifically first responders, meaning police, firefighters, EMTs, people that help us in times of need. This is coming on the heels of many celebrities who are coming out about issues of mental health, anxiety, depression and so forth and we commend their leadership. People like Kevin Love from the NBA, Michael Phelps, Arianna Grande, Dove Cameron, Selena Gomez, Kristen Bell, Ryan Reynolds, Mariah Carey and even Prince Harry, to name a few. And also, over the summer, we’ve unfortunately had some very high-profile suicides, Kate Spade, Anthony Bourdain, who was a favorite of mine and most recently, a young woman, Ellie Soutter, 18 years old who was a member of Britain’s Olympic Snowboard Team.

‍Jay Ruderman: Just some facts before we get into the discussion, some relevant statistics about suicide. Suicide claims the lives of more than 120 Americans each day according to the Center for Disease Control. And over the past two decades, suicide rates have increased nearly in every state in the United States. Half of the states have seen suicide rates increase by more than 30% and today’s topic on mental health and suicide are first responders, which is including again, police and firefighters and EMTs. The Ruderman Family Foundation recent White Paper has found that more first responders die by suicide than in the line of duty.

‍Jay Ruderman: My guest today is a Program Officer at the Ruderman Family Foundation, Miriam Heyman. She received her PhD in Applied Developmental and Educational Psychology from Boston College. She’s the authors of the latest Ruderman White Paper on mental health and suicide of first responders. Dr. Heyman, thank you for joining me today.

‍Miriam Heyman: Thank you for having me.

‍Jay Ruderman: So let’s talk a little bit about this very heavy issue, but an issue that impacts millions of Americans, millions of people around the world and seems to be a growing phenomenon in our society. Why this White Paper? What led you to write a White Paper focusing on first responder mental health?

‍Miriam Heyman: So, we noticed that the bravery of first responders is brought to the public’s attention in the aftermath of the most huge and horrific tragic events. Things like the recent incidents of terror in Parkland, Las Vegas, Sandy Hook, and more. But the public discourse very rarely acknowledges that first responders witness death and destruction regularly, if not daily.

‍Miriam Heyman: A conversation that I had with Commissioner Evans of the Boston Police Department, he was telling me about a murder victim that he encountered and early in the conversation I assumed that he was telling me about an important turning point in his life or his career. And then a few moments later, I realized he was describing just the day before, maybe 12 hours before the conversation that he and I were having. And that was a turning point for me and us at the foundation, because we realized that, given the regular exposure to death and destruction and horror, we should expect this to exert a toll on our first responders and it’s important to pay attention to that.

‍Jay Ruderman: I think all of us have an appreciation for first responders. In our time of need, and in medical emergency, something happens in our home, fire, we depend on the police, fire-fighters, EMTs, to save our lives, save our property, to keep order in our society. I think that most people hold first responders in very high esteem, but maybe you could talk about what the most pressing issues are, facing first responders’ mental health.

Miriam Heyman: Yes, absolutely. So, we know that first responders have elevated risk of post-traumatic stress disorder, depression and substance use. One study found that almost 50% of Fire-fighters surveyed had thought about suicide at some point in their lives, and another study found that the depression rate among Police officers is five time higher than the rate among the general population. And what’s important to point out, is that before you can enter the Police force, you have to pass a qualifying mental health exam. So when you enter the Police force, you do meet a baseline level of mental health, so these rates of depression, of PTSD, of anxiety that we’re seeing really represent deterioration of mental health after joining the Police force. And that’s because first responders … yes, their bravery is unparalleled, but they’re also human. So when they witness this death and destruction, this exerts a toll on them. We should expect it to.

Miriam Heyman: One survey from Police officers from around the country found that, on average, Police officers encounter 188 critical incidents throughout their career. And these critical incidents include things like death, child abuse, domestic violence, things like that. And so without access to mental health services, this exerts a toll on their mental health. And the results of our White Paper show that, in 2017, there were 103 Fire-fighters that died by suicide, and 93 Fire-fighters died in the line of duty, so more Fire-fighters died by suicide than the line of duty, and this 103 is likely a vast underestimation of the actual number. This is the number of reported and validated suicides. Experts estimate that the actual number of Fire-fighters who die by suicide every year is closer to 200, which would be twice the number of line of duty deaths. Also in 2017, there were 140 Police Officer suicides and 129 line of duty deaths.

‍Jay Ruderman: So, there was recent coverage of the White Paper in the Boston Globe a few days ago, which focused on a retired Fire-fighter, and some of the things he experienced were things that I think any human being would have a hard time adjusting to. Holding a baby as the baby is dying in front of his parents, or showing up to a fatal auto accident where the person is still alive and holding your hand, and their life slips away right in front of you.

‍Jay Ruderman: So, let me ask you, we’ve seen this abundance of celebrities talking about mental health and how that’s affecting them. Some of them have talked about suicide, some of them haven’t. Have spoken more about the mental health that they deal with, and they’ve really become leaders on this issue. In the first responders community, with police and Fire-fighters, EMTs, there are some great leaders who are speaking out and many of them you’ve met, and you’ve interviewed. And Commissioner Evans of the Boston Police Department has been a leader and speaking out about the importance of the mental health of his officers, but historically, why do you think there’s been a dearth of raising this issue publicly within the departments or the press in general?

‍Miriam Heyman: So, that’s a great question. I think, first of all, there’s a lot of stigma around mental health and mental wellness in our society at large. We know that children and adolescents who experience symptoms of mental illness, it takes them about 10 years to access services after they start experiencing symptoms, and it’s because our society at large doesn’t talk about mental health and mental illness, so these kids are ashamed to speak up, or they don’t know what they’re experiencing and they don’t know how to ask for help. And the Police and Fire departments around the country are a microcosm of this larger phenomenon. These are professional who explicitly prioritize bravery and toughness, and putting others before themselves, so there’s this perception within these departments that to speak out about your own struggles is selfish and is contrary to your job description.

‍Miriam Heyman: And there’s also the perception that speaking openly about your own struggles will injure career advancement or development. Mental health is a pre-requisite for becoming a Police officer, and folks fear that if they speak openly about anxiety or depression, they might lose their weapon, they might be told that they have to retire, and that’s not entirely fictitious. That has happened. People have been discriminated against after speaking out about mental health and mental illness.

‍Jay Ruderman: And yet, we hear so many stories of police and Fire-fighters who, because of stresses and mental health issues, have not only turned on themselves, but an increase of domestic violence against their partners, an increase in alcoholism or drug use: these are all factors that will affect their performance and affect the performance of public safety in the departments, so where are departments in addressing this issue in order to keep a healthy-

‍Jay Ruderman: departments in addressing this issue in order to keep a healthy department who is available to respond to the public needs?

‍Miriam Heyman: Before I answer that I want to elaborate on your point because I think it’s an important one. We depend on our first responders to be as physically and mentally fit as they can possibly be. We know that mental health or mental illness when untreated can interfere in decision making in a crisis situation. The symptoms of PTSD include flashbacks. When you’re experiencing a flashback, your cognitive capacities are not as strong as they could be. Studies have shown in emergency situations that have been recreated in a laboratory setting that emergency workers who experience flashbacks, that diminishes their ability to assess risk or to plan a multi-step response or to divide attention between a victim and perpetrator. There are also links between physical and mental health. Mental illness is associated with higher levels or cortisol which leads to higher levels of cholesterol and obesity. You’re absolutely right that when we ignore the mental health, our entire society is at risk because our first responders are not as capable as they would otherwise be if we were acknowledging this issue.

‍Jay Ruderman: We talked a little bit about domestic violence. What is the toll not just on the first responders themselves but also on those who depend on them, their families?

‍Miriam Heyman: We know that divorce rates are higher when first responders experience mental illness, domestic violence. Then, in terms of how departments are beginning to address this issue, they are. We’re seeing progress in this area but we need to see a lot more. There are about 18,000 law enforcement agencies in the United States and less than 10% of them have suicide prevention training programs. But we know that when leadership of these departments do speak openly about these issues and encourage their professional members to seek and access treatment, that’s when we see real change.

‍Jay Ruderman: Why is that? Why are many departments not sort of getting with the program and realizing that this is a real crisis facing them and not addressing it? Why are they ignoring it?

‍Miriam Heyman: I think what we really need to see is cultural change and we’re there yet. We’re starting to. The president of the International Association of the Chiefs of Police has said officer mental health is an issue of officer safety. But we’re see waiting to see that, that message from leadership trickle down into individual departments. I think why we’re not there yet is there is a tremendous amount of stigma in our society at large and also within smaller departments and also within families. Family members often hide the suicide of a loved one so in some cases the department leaders might not know of suicide within their own departments. I think there’s a real fear of a vulnerability and to some extent for leadership to speak openly about this issue they have to show their own vulnerability and within these professions that prioritize bravery and courage. That’s something that many people aren’t yet comfortable doing.

‍Jay Ruderman: I think this may be an issue for another show but maybe there could be an analogy to how soldiers who are returning from combat and the way society treats them and the real issues that they might be facing with mental health issues and post-traumatic stress and how the stigma may be exasperating the issues that they’re facing and there is corollary between that and first responders.

‍Miriam Heyman: Absolutely. That’s also important to point out that many first responders do have military experience and that impact of trauma is cumulative. Many of horrors that first responders witness are piled onto a personal history that’s already pretty ripe with drama.

‍Jay Ruderman: Within the first responders community there’s a lot of diversity. Race, sexual orientation, sex of the officer. How is this relevant? How does this play a role, the diversity in the population?

‍Miriam Heyman: Across cultures there are differences in terms of openness around mental health and mental illness so some cultures are more likely to access services than others. Those differences exist within first responder departments as well. I think it’s also to point out that some of the barriers to receiving treatment and help are pragmatic and not necessarily related to culture or stigma. In some areas of the country it’s easier to access mental health service. There are more available qualified people who can offer that support. We see differences across urban various rural areas. We also see differences across paid volunteer firefighters. Paid firefights have access to the resources that their department provides whereas volunteer firefighters often do not. I think it’s an important distinction between these pragmatic barriers and these more cultural barriers. I think many departments do a very good job of providing qualified professionals who can deliver mental health services and yet the firefighter and police officers don’t access those services. While I think there’s variation in cultural barriers, there’s variation in pragmatic barriers as well, the extent to which the services are available.

‍Jay Ruderman: The Ruderman White Paper on Mental Health and Suicide of First Responders has gotten a lot of media attention, especially the statistic that jumps out that more first responders die by suicide than in the line of the duty. That’s been a key pull-out statistic. Why is this not getting more attention? It seems like as an American society we’re more responsive to the latest attack in issued tragedy and then society tends to take action. Why don’t you see more action occurring now?

‍Miriam Heyman: I think the field has been very reactive in this area as well as opposed to proactive. Boston has made great strides in the area of first responder mental health. All of the leaders that I have spoken to here has said it was a really an aftermath of the Boston Marathon bombing of 2013 which was a time when many first witnessed horrific tragedy and it was a very public event. After that, the city of Boston saw the need to do something. They’ve made great strides. There’s now a program at McQueen’s hospital which specializes in mental health for first responders and people with military experience. Many police officers and firefighters are able to access those services through the insurance provided by the city of Boston. I think to answer your question of why aren’t people doing more and paying attention to this, I think, unfortunately, we’ve seen us taking these big, horrible tragedies to spur action in this area.

‍Jay Ruderman: In writing the paper I’m sure you’ve had many conversations and met people and there’s so many different stories but what are some of the stories that sort of jump out at you that you’re just like this is something that really had a personal impact on me?

‍Miriam Heyman: The stories about children I think are the most difficult to hear and absorb. I spoke with a detective from the New York City Police Department who was telling me about a four year old who had just been horrifically abused. When he arrived at the scene, she had died. Stories about fires in which entire families pass away. It’s starting to change but the norm has been for decades that after these really life changing, horrendous events you go get a beer with your colleague and then you go back to work the next day. Even when there is access to a mental professional or a mental health check up so to speak, the culture has not been to take that step. The culture has been to have a beer, suck it up, go to work.

‍Jay Ruderman: More toughing it up and this is part of the job and whether you’re a solider of a first responder, this is what you deal with and just deal with it on your own and go on with your life which some people may able to do but a lot may not and may be repressed and it comes out in other ways. What do you think needs to happen in order to see real change?

‍Miriam Heyman: When I spoke to a psychiatrist here in Boston, she suggested referring to mental illness amongst first responders as an occupational hazard. It is absolutely normal and given what these men and women go through on a daily basis it really isn’t an illness it’s normal and normative and we should expect to see this happening. The question is then how we do we address it?

‍Miriam Heyman: I think first and foremost we have to acknowledge that this issue is very complicated. The majority of police officers who die by suicide use a gun and of course there’s no way to limit access to weapons. There are also pragmatic barriers. As I mentioned before, in rural areas you might have to drive an hour and a half to see a qualified mental health professional. This is complicated. At the same time, first responders work very long and perhaps very odd hours. Putting all of that aside for now, the answer really is conversation. When people aren’t talking about this, first responders who are struggling with depression or anxiety feel ashamed and therefore they feel alone and it seems as though getting help is not an option. The conversation can start at the top and the national news outlets or the department chiefs in fire and police departments to encourage regularly their subordinates to access care, to have posters within offices that have phone numbers of who people can turn if they need help. I think that conversation has to start at the very beginning and has to extend throughout the career of firefighters and police officers. In some academies, they’re learn-

‍Miriam Heyman: fighters and police officers. In some academies, they’re learning about the importance of maintaining mental health along with physical health, and that’s great. It should start as early as the academy, but we have to make sure that these … that our police officers and firefighters continue to receive these messages throughout the entire course of their career. First responders who die by suicide, their lives should be celebrated, and they should be remembered as heroes just as we celebrate and remember the lives of first responders who die in the line of duty.

‍Miriam Heyman: I think it’s also important to point out that the National Law Enforcement Memorial in Washington, D.C., currently first responders who die by suicide are not allowed to be included in that memorial, so we need to change that. We need to celebrate those lives, and that, in turn, will bring this issue to light so that people don’t feel ashamed, they don’t feel alone. And then, I think we should do more to encourage first responders to access those services that are available within their departments. Others have suggested instituting mandatory mental health checkups, perhaps annually, or perhaps after a critical incident. And I think we need to prioritize mental health, as a society, the way that we prioritize physical health.

‍Jay Ruderman: So, in the age of social media, and where news is happening 24/7, this issue of mental health is getting a lot of attention, but it can also reinforce stigma. I think that stigma of society, that people with issues of mental health are weaker, is something that we need to combat. It can happen from the ground level. It can happen from leadership like Commissioner Evans, other leaders in the first responder community across the United States, and across the world, political figures.

‍Jay Ruderman: I do think that there is a growing trend in entertainment. I don’t know if you have any … It’s a little bit off-topic, but it’s on-topic of being why is that happening, in your opinion, that entertainers are coming out and talking very publicly about their mental health, and it’s not really happening in the first responder community.

‍Miriam Heyman: I hope, I mean, I think the optimistic view to that is that entertainers see their power and their potential to have a tremendous impact, because you’re right, mental illness is seen as weakness, and yet, when the idols of our society speak openly about their own experiences and struggles, that shatters the view that mental illness is a sign of weakness. So, when we hear people like Dwayne Johnson, The Rock, speaking about his experience with depression, I think that forces us to rethink how we view mental illness, in a very good way.

Jay Ruderman: But, I think you also brought up an important point where for celebrities to bring up issues of mental health doesn’t necessarily adversely impact their career. In fact, sometimes it might help their career, whereas a first responder addressing it, in a very bureaucratic structure, may actually harm their career.

‍Jay Ruderman: So, I think that’s an issue that needs to be addressed by the overall first responder community head-on.

Miriam Heyman: Yes. And I think it’s important to acknowledge that for some people with serious struggles, it might be the right answer for them to take some time off or to retire. People are afraid that that will be the answer they receive, and that’s a real fear, however, the more that we institute regular mental health checkups, and regular access to mental health services, we can prevent people from getting to that point, so that people will receive treatment for more minor or subtle mental health struggles before it gets to the point where they are told, “Yes, please go home. Take a week, take a month, whatever.”

‍Jay Ruderman: Right. And I know that this is a heavy issue, and it’s not comfortable. I mean, none of us like to think of suicide, as I said in the beginning, the suicide of Anthony Bourdain really hit me and millions of people around the world very heavily, because we were attached to him. He was on our TV every week, and he was full of life and experiencing wonderful things around the globe, and we often don’t see the signs but we really have to shine a light and put this out in the open so that we can have a more fulfilling life and a more secure life, and watch out over those that we love, and our kids, and our people that we depend on.

‍Miriam Heyman: Yeah, I absolutely agree. I mean, I think Anthony Bourdain seemed to have the perfect life. I think it’s a great example of how this issue can impact anyone and loved ones might not necessarily see the signs. The best we can do today is talk about it and hopefully reach someone who is having a hard time, and encouraging all of you out there to access services if that would be helpful.

‍Jay Ruderman: So, I think we have to be very cognizant of the fact that popular media has a huge impact, especially among younger people, of how they look at issues of mental health and suicide. So many people who are celebrities, younger celebrities, have come out very courageously and talked about mental health, which I think will impact a lot of younger people to look at their mental health and to take it seriously. You know, we, as a foundation, have commended them for this. But, we also have to be careful that we don’t glorify suicide, especially when it’s on the rise. Recent show, 13 Reasons Why, I know from my own kids who are young, who watched the show because it was popular in their school and a lot of people were watching it, it’s a very disturbing show in terms of dealing directly with suicide and some very disturbing scenes, and what you don’t want to happen … I mean, the entertainment industry is hugely influential, and you don’t want to see these copycat issues where people take action based on messages that they’re receiving.

‍Jay Ruderman: So, I think that’s important. I think on the one hand, we’re dealing with stigma. On the other hand, we’re dealing with a really serious issue, and we want to save our kids. Life has a lot of pressures now. It has a lot more pressures with kids being on social media, and bullying, and so many things that they’re facing that the entertainment industry, public in general, public figures, have to be very careful about how they talk about this, and that we don’t do things that might encourage people to take actions that are irreversible.

‍Miriam Heyman: I agree. I think that conversation such as the one that you and I are having today is a very key piece to the puzzle of ending this epidemic. There are really effective mental health services and treatments out there, but without conversation, people don’t know about those services, or they don’t feel comfortable accessing them. So, ending the silence around this issue I think is key to seeing change, and as you said, ending unnecessary tragedy.

‍Jay Ruderman: So, first of all, I want to say to anyone who’s listening to this, if you need help, if you want to talk to someone, there is the National Suicide Prevention Lifeline, and their number is 1-800-273-8255. There’s someone there to speak to you 24 hours a day, seven days a week. If you’re having any feelings of suicide, acute depression, I suggest that you reach out to this number. I mean, we really need to, as a society, make this a national priority. We don’t want people that are coming to our aid to be in a situation where they are unhealthy and unable to help the general public. I think we need to turn to our public leaders to really address this issue. I want to commend you, Miriam, for taking the lead in writing a white paper, A Mental Health and Suicide of First Responders, that I think is having a tremendous impact on our national culture, and it’s getting a lot of media attention and hopefully will get more media attention.

‍Jay Ruderman: One thing that I’ve noticed is that this white paper is getting picked up all over the country, and whether it’s in North Dakota, Louisiana, any other state around the country, every police department has a story where they’re dealing with the mental health of an officer or an EMT or firefighter. It’s so important to continue to get this story out there. You know, we, at the Ruderman Family Foundation, support first responders in every possible way. We realize the importance that they have on society, and we want to make sure they feel welcome and able to access lifesaving mental healthcare.

Jay Ruderman: I think that’s a wrap, and I appreciate everyone for joining us today to listen to this podcast. I want to especially thank Dr. Miriam Heyman for joining me and discussing this important issue.

‍Miriam Heyman: Thank you, Jay. It was great being here.

‍Jay Ruderman: Thank you.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman

Jay Ruderman: The disability rights movement is a civil rights movement, but is often not seen that way. Today we’re going to hear from an expert as to where that community stands, and how it could be more impactful.Announcer: All Inclusive, a podcast on inclusion, innovation, and social justice, with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive. I’m your host Jay Ruderman. With me today is Andy Imparato executive director of The Association of the University Centers on Disabilities. As a disability rights lawyer, and policy professional with more than two decades of experience in government and advocacy roles, he has worked with bipartisan policy makers to advance disability policy at the national level in the areas of civil rights, workforce development, and disability benefits. Andy, welcome to the podcast.

‍Andy Imparato: Thanks Jay, great to be here.

‍Jay Ruderman: I had an incident where I put out a tweet that was pretty innocuous, but I missed a word, and a bunch of people jumped on me and said, “You’re an ableist,” which sort of caught me by surprise. I come from a background in advocacy in the pro-Israel movement, where our mantra was, we have friends and potential friends. Sometimes in the disability community, and this may be in all advocacy communities, so I don’t want to just single out the disability community, but there’s a tendency to get deep into the weeds, and fight amongst yourselves. How do you deal with that in the disability community where people are throwing around very hurtful terms, and sort of attacking their own fellow advocates?

‍Andy Imparato: Well I guess for me it starts with what is the kind of leadership that we’re looking for as a civil rights movement? I believe Cornell West said, “In order to lead people you have to love people. In order to save people, you have to serve people.” To me, the best case scenario in a leader is somebody who’s going to lead with love, with authenticity, is going to see the good in people, and lift up the good in people, and is really going to be very careful about attacking people individually. It’s one thing to attack somebody’s ideas, it’s another thing to attack them as a person. If you attack people as a person, I would argue it’s generally not very effective advocacy.

Jay Ruderman: Let’s talk about this term ableism. Seems like a strong term to me, it’s like calling someone a racist. I’ve heard it bandied about in the community. How would you describe the term? What are your feelings about it?

‍Andy Imparato: Ableism is a word that connects us with other movements that are trying to push back against oppression. Yeah, I mean, it doesn’t feel good to be called sexist, or racist, or homophobic, or whatever, but sometimes being able to name something, even if it’s harsh, it can be empowering for the person that’s in the group that has been oppressed.

Jay Ruderman: Do you think that general society understands the term ableism? I mean racism, or sexism is generally well-understood. When you call someone an ableist, do people even know what you’re talking about?

Andy Imparato: I think it’s insider language. I don’t think the average American knows what ableism is. There’s probably some generational differences there. I think people in our children’s generation may have been exposed to the term and the concept of disability as a civil rights issue more than people in our parents’ generation. But no, I certainly don’t think it’s as well-known of a term as sexism, or racism.

‍Jay Ruderman: During your career, can you describe steps that you’ve taken to fight against ableism?

‍Andy Imparato: Sure, I mean, I’m a disability civil rights lawyer, so I feel like part of my job is to help people understand what discrimination looks like in the area of disability. One of the stories that I tell a lot when I give a keynote talk, is an experience I had early in my career where I applied for a job with an organization that did advocacy for people with mental disabilities, and I self-identified as a mental health consumer in my cover letter. The lawyer that was screening the resumes talked to one of my references and said, “You know, Andy says he’s a mental health consumer, what can you tell me about that?” That was an illegal question under the ADA, and he was training other people around the country in how to comply with the ADA, and he violated it.

‍Andy Imparato: I was in DC interviewing for other jobs. I asked them if they wanted to talk to me. They had me come in, and we went through the whole interview. They never asked about me being a mental health consumer. So at the end, I said, “I just want to take this opportunity to answer any questions. I know you talked to one of my references. Is there any questions you have for me?” The lawyer that had violated the ADA didn’t say anything. The other lawyer looked nervous, and she said, “Well is there anything you want to tell us?” I started telling them about my experience with bipolar disorder. I tried to link it to the mission of the organization. The other lawyer said, “Oh come on Andy. We all see a therapist. Why is that relevant?”

‍Andy Imparato: I saw that as a challenge that my disability wasn’t real, or significant. So I talked about aspects of it that I wouldn’t normally talk about in a job interview to try to get over that hurdle. Then it was like a light bulb went off, and she saw I really was bipolar, and she talked about a staff person they had had who was bipolar who was inappropriate at staff meetings. So in her mind, I either wasn’t really disabled, or I was so disabled that I was no longer qualified or desirable for the job.

‍Andy Imparato: So that’s one form of ableism where we make people get over one hurdle, and then immediately go into the category of unqualified. You forget the fact that I went to Stanford Law School. You forget that I did a prestigious clerkship and fellowship, but now I’m just the bipolar person who’s going to be inappropriate at staff meetings. That’s an example of the kind of fears, myths, and stereotypes connected to a diagnosis that you could call that ableism.

‍Jay Ruderman: There’ve been more, and more artists who’ve come out about mental health issues, whether they be athletes, or entertainers, singers, actors, there seems to have been a parade of well-known celebrities in our society coming out and talking about their own mental health, and the challenges. How do you see this as a mental health advocate? Is it a positive thing? Is it reducing stigma in our society?

Andy Imparato: I think it is. When you have prominent in people that have achieved success in their careers, talking about their mental health disabilities, it helps people understand that it’s possible to have a lot of success professionally, and live with a mental health disability. It makes it easier for the next person to be open, including people that aren’t celebrities.

‍Jay Ruderman: Let’s talk a little bit about the disability community, because the figures that I’ve seen is that universally 20% of our population has some form of a disability. Yet, there’s a lot of fractionalization within the disability community, people tend to identify by their disability. Talk a little bit about your experience working, especially in Washington, with a very fractured disability community. I guess, my follow-up question is how can we reach our potential? How can the disability community be more powerful?

‍Andy Imparato: When I worked for Senator Harkin the first time in the early ’90s, when he was the chair of the Disability Policies Sub-Committee in the senate, and again, Massachusetts Senator Ted Kennedy was the chair of the full committee, his staff director Bobby Silverstein said to me, “We have three goals in this sub-committee, keep the disability community together, keep the disability community together, and keep the disability together.” From his perspective, and chairman Harkin’s perspective, the only way we were going to be effective in doing disability policy is if we found ways to keep the disability community from fighting with each other.

‍Andy Imparato: We tried to pick issues that could bring people together. We tried to resolve conflict, and bring people around a table, and find ways forward that everybody could live with. We did not want open conflict to be playing out on the hill, because we knew it would get in the way of legislative accomplishments. In some ways, I feel like the Americans with Disabilities Act was a highpoint in terms of the community coming together, and staying together around a pretty complicated bill that had a lot of compromises built into it. I think that was a testament to Senator Harkin, Bobby Silverstein, Tony Coelho, the people that worked on that bill found a way, Pat Wright, you know, from the outside, was working for the Disability Rights Education Defense Fund, they found a way to resolve conflicts within the community for the most part. The community was pretty supportive of the legislation, certainly when it passed.

‍Andy Imparato: Again, for me this comes back to leadership. I think we need leadership in the disability movement that knows how to bring people together, but I feel like every civil rights group has fights within the group. I don’t think it’s unique to disability. We are very diverse. Sometimes the issues for one part of the community create issues for another part of the community. I think a good example of that is curb cuts. When we put in curb cuts for people in wheelchairs, there were blind people that were put at risk because they were using the curb with their cane to know when they were about to walk into the street. We had to figure out a workaround. Now we have curb cuts that have bumps in the curb cuts so the blind person will know.

‍Andy Imparato: I think generally if people trust each other, and love, and respect each other, you can work out differences. It does require taking the time to build relationships.

‍Jay Ruderman: Let me ask you a question about another division I see in the community. When I’ve met with members of congress in general talked about the disability community, and they will relate to me that some activists will come and ask about benefits, and some activists will come and ask about rights. They’re both important, I mean, people need benefits in order to survive, but they need rights in order to prosper in society. How do you see that division? How could we bridge the gaps there?

‍Andy Imparato: I think the ADA has a vision that people with disabilities should be able to participate fully in all aspects of life. I think the healthiest way to think about benefits is what are the supports that people need to be able to participate fully in all aspects of life? The benefit system that we have now, which dates back … the definition of Disability and Social Security Act dates back to 1956. It has this bizarre notion that the only people who should get supports from the government are people who can’t work. Most people with disabilities want to work, but we have a benefit system that was designed to support people who can’t work.

‍Andy Imparato: The whole concept of not being able to work because of your disability is 1950s thinking. Our field has evolved. The real question is what are we willing to do to support somebody to work in a competitive environment? Are we willing to provide a job coach if that’s what the person needs? Are we willing to provide assistive technology? Are we willing to provide carving out a job around the abilities and skills, and interests of the employee? I think I’ve spent a lot of time and energy trying to change the definition of disability in Social Security Act, because I do think that creates a serious problem in terms of people not being able to work to their full potential.

‍Jay Ruderman: Do we still have organizations within the disability community that are supporting a sub-minimum wage for people with disabilities who are working, and others who are fighting against a sub-minimum wage?

‍Andy Imparato: Yeah, I mean, the way that I would frame that is there are, depending on whose numbers you believe, about 400,000 people working in environments that are segregated where their employer has a certificate, where they can pay them less than minimum wage if their productivity justifies being paid less than minimum wage. The people that are advocating to move away from sub-minimum wage in my organization, AUCD is one of them, we feel that sub-minimum wage is inherently wrong, and that the whole concept of a minimum wage is that everybody who works should be paid a federally guaranteed minimum wage, which is what we’ve established is the least amount that you could pay somebody and not exploit them.

‍Andy Imparato: The folks that are advocating that we’re not ready to move away from sub-minimum wage, in my experience, they don’t necessarily love sub-minimum wage, they’re worried that if you take away that option, that those people that are working in those environments, a good number of them are not going to move into a competitive job, they’re going to move into adult daycare, or day-habilitation, or whatever the terminology you want to use. But they’re basically not going to have any work.

‍Jay Ruderman: Are they advocating for more gradual approach?

‍Andy Imparato: Yeah. I think people that I have a lot of respect for, like Senator Casey, are advocating for a gradual approach. They want to have a process for moving people out of segregated settings where they’re paid less than minimum wage into competitive jobs, and the right supports around them so that they can be successful.

‍Jay Ruderman: There’s a lot of talk about intersectionality in our society. How does the disability rights movement fit into intersectionality? Are we an effective part of the conversation?

‍Andy Imparato: Well, as I understand that term, it was originally developed by an African American woman who was talking about being a woman, and a racial minority, and some of the unique challenges that come from those two marginalized, or discriminated against groups. As a white male with a disability, I don’t know that I’m an expert on intersectionality, but the way that I think of it, in terms of our modern disability movement is there are more activists of color with disabilities who have a stronger voice, in part because of social media. People like Alice Wong, or Valisa Thompson, or other folks that have used these platforms to really shine a spotlight on issues that weren’t getting the level of attention without social media.

‍Andy Imparato: Like one area where I see it playing out is in the autism community. There are a lot of autistic activists who are also transgender, or members of the LGBT community. I’m seeing a stronger alliance between our movement and the LGBT movement in part because there are so many autistic people who are engaged actively in both movements. That to me feels healthy. I think there’s still room for improvement in terms of civil rights groups affirmatively recruiting people with disabilities who are part of their group to work for their organizations, and reflect that perspective. I feel like there’s an opportunity in the broader civil rights community to embrace disability, and there’s an opportunity for the disability community to be more intentional about embracing people from diverse backgrounds.

‍Jay Ruderman: In social justice, often disability is left out, is the onus on the overall social justice movement? Or is the onus on the disability community to be more included in that movement?

‍Andy Imparato: I mean, my feeling is that we as disability activists need to be present and heard from in every social justice movement. We exist in every social justice movement, we need to assert our place and draw connections between whatever the issue is, and the organizations that we work for that we’re part of, and disability issues. Immigration’s a good example, there are lots of immigrants with disabilities who are going to be affected by this public charge rule that the White House has supported. It’s a rule that’s basically designed to exclude people with disabilities from coming into the country if there’s a chance that you’re going to be on benefits, we don’t want you as a citizen. That’s a disability issue, and an immigration issue. I think there’s a real opportunity for the disability community to work with immigrants’ rights communities to make sure that we don’t have this kind of discrimination in our immigration policy.

‍Jay Ruderman: Andy, one last question about the political power of the disability community. We know that special interest groups and minority groups carry a lot of influence in our political system, and I’m not talking about democrats and republicans, but just overall influencing our country. If 20% of our country has some form of a disability, how do you see the community coming together and really elevating its political impact?

Andy Imparato: Well, I think some of it has to do with what do we mean when we say the disability community? If you mean people who are protected by the Americans with Disabilities Act, and their families, it’s a huge population. Most of the people protected by the ADA don’t self-identify as a person with a disability and don’t have a strong disability identity. I feel like one of the things we have to do is come up with language that brings people together around that identity. One of the things I did when I was at APD, is I started talking about people with disabilities and chronic health conditions, because most people with chronic health conditions were protected by the ADA, but they were more comfortable calling their thing a chronic health condition, then they were calling it a disability.

‍Andy Imparato: I mean, this is a communications issue, it’s a marketing issue. We have to come up with a way of talking about the population that we mean when we say disability community, so that they think that they’re part of the population, and they’re willing to connect with each other around the issues. The Affordable Care Act could be an opportunity. There are pre-existing conditions, people with pre-existing conditions are protected by the Americans with Disabilities Act, but they may be more comfortable calling themselves people with pre-existing conditions than they are people with disabilities. There may be an opportunity if you look at the midterms, health care was the big issue for a lot of democratic candidates who won. If we can organize this pre-existing condition population as a political force that may become an opportunity to get a lot more people engaged on disability than we’ve been able to so far.

Jay Ruderman: I think supporting disability rights is something that everyone can get behind, not just because of self-interest, but because it’s the right thing to do, and people with disabilities are a large segment of our population, but I’ve heard it been said many times, that the disability community is the one community that most of us, if we live long enough, will join. There’s also a self-interest in supporting disability rights because as we age, or at any moment, anyone of us can develop a disability.

‍Andy Imparato: Yeah, that’s right. I mean, if you think about how we sold the health care bill when President Obama was working on it, he talked about covering the uninsured, and he talked about bending the cost-curve that we were spending too much money on health care, and this would help us rein in the cost. What I think would have been more effective is to say we need a health care system that’s there for you when you need it the most.

Andy Imparato: Elizabeth Warren, when she was a law professor at Harvard called me once when I was AAPD just to make sure that I knew that one half of personal bankruptcies were people that couldn’t afford their health care bills. We can say you’re all going to become a person with a disability at some point, but I think a lot of people are going to have a hard time understanding that. But we can say we need policies in place so that if you do find yourself in a situation where you have $100,000 health care bills, you’re not going to have to declare bankruptcy to get the health care that you need to survive.

‍Andy Imparato: That’s a disability issue, but it’s also a human issue. I think that’s what you’re getting at. We’re all human. We’re all going to find ourselves benefiting from accessibility whether we call ourselves people with disabilities or not. So let’s create a human-friendly policy so that everybody can participate no matter what happens to them.

‍Jay Ruderman: Well thank you Andy Imparato. You’re a wise man. I appreciate you coming on the podcast, and disseminating some of your advice and experience. Look forward to working with you in the future.

‍Andy Imparato: Thank you Jay. It’s my pleasure.Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman

Jay Ruderman: Singer songwriter Mandy Harvey lost her hearing at 18 and since then she’s gone on to become a successful musician. Today, she joins us for a special interview.

Announcer: All Inclusive, a podcast on inclusion, innovation and social justice, with Jay Ruderman.

‍Jay Ruderman: Welcome to All Inclusive, a podcast on inclusion, innovation and social justice. I’m Jay Ruderman your host. An award winning singer songwriter and ukulele player, Mandy Harvey has released three jazz albums, receives the VSA’s 2011 international young soloist award, and was a finalist on the 12th season of America’s Got Talent. We’re proud to have her with us here today to discuss her journey as a successful deaf musician.

‍Jay Ruderman: Mandy, thank you for joining us.

‍Mandy Harvey: Thank you for having me, I’m really happy to be here.

‍Jay Ruderman: So, let’s talk about how and when your musical journey began.

‍Mandy Harvey: I started as part of choir. My mom put me in a choir class, pretty sure for daycare needs. And I fell in love with it. I was always a hard of hearing child, so for me it was a way to be a part of a community and a part of the conversation and it kind of became addictive as my form of expressing myself.

‍Jay Ruderman: It’s my understanding that your path was already set and then at age 18 you completely lost your hearing while majoring in vocal music education at Colorado State University. Can you tell us your story?

Mandy Harvey: I went to school for education, I never in my wildest dreams wanted to be a performer. But I wanted to give other people the opportunity to express themselves and to be able to be a part of that community factor that I fell in love with and so I went to school for vocal music education and I was just happy. My dream and my reality met beautifully and after a months of being at Colorado State University, I started to have extreme difficulty understanding anybody and I couldn’t understand my teachers talking anymore. And over a course of nine months I went from being slightly hard of hearing to being profoundly deaf, 110 decibels down in both ears.

‍Mandy Harvey: And later we found out it’s because I have Ehlers-Danlos syndrome, or EDS, and my nerves were deteriorating, and that was the cause of my hearing loss but at the moment I was just a music major watching her dreams and her future being ripped out of her hands and I had no ambition or no understanding that I would ever come back to music. I thought that once you lost your hearing that was the end. But I was extraordinarily wrong. And I’ve been influenced by so many amazing deaf musicians.

‍Jay Ruderman: So I should tell our audience that we’re conducting this interview with a sign language interpreter who’s interpreting what I’m saying to you and then you’re telling your story but you sound as if you are a hearing person, your language sounds perfectly clear. Do you receive any criticism from people in the deaf community who may have maybe deaf from birth? And just tell me how you fit into that community.

‍Mandy Harvey: I think it’s a little difficult. I work on speech therapy and have been ever since I was a child because I was hard of hearing and speaking clearly in this manner is not easy for me at all. It’s very laborious, and when I’m tired I have a very thick deaf accent that comes out. But I think everybody struggles with feeling like they belong.

‍Mandy Harvey: When I first lost my hearing obviously there’s people who were born deaf and have a very deep rooted community system in place and I felt as if I really didn’t belong in either world, you know, the deaf word or the hearing world. I was in kind of limbo as I had lived 18 years mostly in the hearing world and now I was being transitioning in.

‍Mandy Harvey: But I have to tell you, as soon as I moved back home from school, I started taking sign language classes and it has become a huge door opening for communication for me and getting involved with the deaf community and having friends who understand just the barriers that you face on a daily basis has been instrumental to me with accepting my life the way that it is now instead of trying to chase a life that I just don’t have anymore.

‍Mandy Harvey: And of course you’re gonna get people who are critical of anything that you do, but you can’t allow other people to dictate your actions. As an adult, I care less about appeasing every single person and instead try to make communication as easy as possible, try to express myself as much as possible and try to encourage as many people as possible.

‍Jay Ruderman: It sounds like a very strong positive attitude that you’ve spent a lot of time developing, so I commend you for that. Let me take you back to when you lost your hearing and I know that initially you left school and decided to give up on music. Can you talk about that period in your life?

‍Mandy Harvey: Well you know, I had fed into all of the voices that were around me which were saying that if you can’t hear you can’t do music and I allowed them to convince me that that was true and so I gave up on music I didn’t even sing in the shower for a year and a half. And it was as if a part of my soul died because music has always been so connected with who I am and so I kind of call that my zombie period of time, I just got up, I did small things, I went to sleep, I got up, I did small things, I went to sleep.

‍Jay Ruderman: What made you get back to music?

Mandy Harvey: Eventually my dad encouraged me to pick up the guitar again and play with him because we had been playing guitar my whole childhood together. And so I was watching the chord patterns and watching the strumming and I was playing the chords with him and in rhythm with him as I was watching and I was feeling the vibrations from the instrument on my fingers and down my arm and against my stomach and my chest as I was holding onto this guitar.

‍Mandy Harvey: And from there I was encouraged to do something even more ridiculous which was try to learn a song to sing and the process of using visual tuners and feeling I’m putting my hand on my throat finding where the vibration was the strongest for each note and marking it off on my throat, doing an inordinate amount of scales and running through patterns again and again and again and again and every time making a mistake, starting the entire process over.

‍Mandy Harvey:Even though I’m sure it sounds nothing the way that it used to be, it’s me. And I’ve found an incredible freedom with singing without being able to hear myself, I can’t judge myself. And I’m not scared to sing anymore. Once I could figure out how to get a song out, I was encouraged by other people to perform at a jazz club just an open mic night in Fort Collins, and that was my old vocal coach. And you know, that started from a simple conversation. She said hey, what do you want to sing? And now that I can pick, I said well I want to sing jazz.

‍Mandy Harvey: And so she’s like great, sing a song in front of a live audience. And you know, I’m a very shy person, I’ve never wanted to be a performer, and this was way outside my comfort zone. But I said yes, I’m committed to it. And so I showed up, I sang in front of seven people, most terrifying performance I ever did in my life, one song. And then from there they asked me to come back and then I did it again, and again and pretty soon I was touring and pretty soon I was making albums, all because other people kept asking me to do it. Not because it was my idea.

Mandy Harvey: I kind of got pushed down a stream, and it led me all the way to doing something ridiculous like America’s Got Talent.

‍Jay Ruderman: Tell us more about your life touring as a musician, and specifically let’s talk about America’s Got Talent. What was it like for someone who’s shy, to be on such a major stage.

‍Mandy Harvey: Touring was a big change for me and I really wanted to motivate and encourage other people that was always the driving force behind touring. It wasn’t self-glorification or getting any kind of acknowledgement for what I was doing. I just wanted to say that it’s okay to fail, and to brush your knees off and stand back up and try again.

‍Mandy Harvey: But I just wanted to make people smile and so when people were like, well can you come sing here? I was like sure. And then soon it was not just me and a pianist and it was me and a full band and you build and you grow and people keep asking you to come back. And then I was offered an opportunity to audition for America’s Got Talent.

‍Mandy Harvey: For a very long time I said no. And that was because I was too afraid to do it. But I was talking to those people who are closest to me, and they asked me a very simple question. What do you want to do with your life? I want to encourage people. I want to say that it’s okay to fail, that you can get back up. I want to make people smile, I want to show a different side of what a disability looks like and say that there’s a bunch of invisible ones. I want to say that we can lift and encourage people instead of pushing them down. That’s what I want to do with my life.

‍Mandy Harvey: And they said well why not do it on a big scale? And I was like, because it’s terrifying! But you know, what I wanted to do and encourage people was so much more important than my fear. So I showed up.

‍Mandy Harvey: I had not seen the show before, I didn’t know what a golden buzzer was. I assumed I would get axed off. And when the golden confetti came down and Simon Cowell was like you’re not gonna need a translator for this, no way in my wildest dreams would I have imagined that happening. And then from that to go onto being seen collectively over five hundred million times just that audition video is bizarre. It’s … That’s not real to me. But you can see millions of conversations of people encouraging each other, and no matter what happens it was the best decision I could have made just to start those conversations.

‍Jay Ruderman: Well it was an awesome performance and for anyone who hasn’t seen it, I would definitely encourage them to check it out. Let me just ask you about something that I’ve been thinking about a lot and has actually been in the news, that many artists have come out very vocally and talked about mental health. And challenges that they have in the industry, can you talk about the mental health challenges that you see in the industry and the benefits of people who are public figures speaking openly about their mental health challenges?

‍Mandy Harvey: There is a lot of frustration, there’s a lot of hopelessness, there’s a lot of depression, there’s a lot of anxiety that is rampant right now. And it’s not just the performers, it’s everyone. But now you’re in a public situation where you’re always supposed to be smiling and you’re always supposed to be giving of your time and I mean, I’m home maybe a few days a month. And so to never be able to be home, to sleep in my own bed, and to just be able to relax and recharge my brain, it just doesn’t happen as much as it should.

‍Mandy Harvey: And so I think that there’s just so much pressure for people with any job to do their best and I think that it’s great that we’re talking about it. Mental health is something that we don’t put a lot of effort into, and we don’t talk about as much. And it needs to be expressed more.

‍Jay Ruderman: Thank you. When I last saw you perform, which was at the Ruderman Inclusion Summit in Boston, you perform without shoes. Can you just talk about why you do that?

‍Mandy Harvey: I’ve started really developing feeling the floor through my feet. When it’s just me and a ukulele, I could probably wear shoes if I wanted to because I’m holding the instrument against my skin. But it’s so I can feel different things through the floor. It’s a lot of work, but I’m happy to do the work.

‍Jay Ruderman: You’ve been accused of promoting oralism. And as a result you received death threats from within the deaf community, for what they describe as promoting hearing activity. First of all what is oralism? And can you describe what this is all about.

‍Mandy Harvey: I can give you my take of it. You know, the deaf community has been so oppressed for such a long time. And it hasn’t been until recently that we’ve even acknowledged that sign language is a language. In fact, I’m pretty sure only 44 states even accept it as a foreign language, which is ridiculous. But, to have a language, to be proud of your culture, it’s survival. And it’s important.

Mandy Harvey: So there’s part of it that I very much understand, you know. You’re trying to break kind of a culture norm. But, there’s so many different forms of being deaf. You know, being deaf doesn’t mean that you can’t speak, being deaf doesn’t mean that you don’t like music. Being deaf doesn’t mean that you have to live in one small bubble. And so I think in my situation with oralism which is saying that I talk, and I sing, and so I’m doing hearing activities and in some perspectives it would be as if I am shunning the deaf community and saying that they’re broken and need to be fixed and I want to live in the hearing world.

Mandy Harvey: In my situation, it’s a very small group of loud voices that are critical. And the general population of most the deaf people that I’ve met love what I’m doing, because there’s a huge culture shift that’s been going on in the last 15 years called Deaf Can. And it’s saying that deaf can do anything that they want to do, they can do any job. They can do any activity, they can sing, they can paint, they can climb mountains, they can have kids, they can be teachers, they can be CEOs of major companies. It doesn’t matter.

‍Mandy Harvey: And so this movement is taking over and those voices who are staunch we have to keep things exactly the same or else our culture will not be the same, it’s starting to fade a bit. You can’t stop change. And you can’t stop growth.

‍Jay Ruderman: So you’re very involved in social media. And how do you deal with people who are overly critical, trolling you on social media? What’s your technique for dealing with that?

‍Mandy Harvey: Ignore them. People are gonna be so critical about everything, you know. I have people who tear me down because my eyelids are kind of swollen looking. I have EDS, it’s one of the problems with having it is (that) my skin is overly hypermobile, and stretches and so the skin swells and it’s movable. And so I’ve had people who criticize my face, I have people who criticize my legs and the fact that they’re swollen all the time. I don’t care. And I am trying to encourage and lift up as many people as possible. And I know that I’m not gonna make everybody happy.

‍Mandy Harvey: And people if they want to have an honest conversation with me? Happy to have a conversation. If they’re just going to say hey, you’re a fat slob. Delete. You know? Ignore them. It’s an anonymous thing to get a rise, to get a reaction so that maybe they are seen. And maybe that’s their own pain that’s being leaked out.

‍Jay Ruderman: Very wise. So today you are an ambassador for a non-profit organization called No Barriers that helps people with disabilities overcome obstacles. Can you tell us about your role and work at No Barriers?

‍Mandy Harvey:Their goal is to help people with and without disabilities or different abilities to overcome those obstacles. And so you have beautiful and amazing people who have founded this organization, one of which is Erik Weihenmayer. He’s the first blind man to climb Mount Everest, and has since done the seven summits and kayaked the Grand Canyon and he is a co-founder of this group and their motto is what’s within you is stronger than what’s in your way. And it’s really just a community of people who acknowledge that barriers exist, smack into those walls on a daily basis, and say hey, let’s cheer each other on, let’s find solutions, sometimes creative technology solutions, to be able to accomplish our goals and our dreams as a team.

‍Mandy Harvey: I’ve seen some amazing people in this group. Kyle Maynard was born without arms or legs and he crab walked up Mount Kilimanjaro. And I think he’s done three of the seven summits now. And he worked with a group of people to design technology of his own special shoes and that gets them up ice. It’s incredible how much can be changed if people work together.

‍Mandy Harvey: And so my role in it as an ambassador is just mostly to encourage people. Which is an amazing job. I get to encourage people, I get to help improve certain aspects of inclusivity and make sure that things are a little bit more inclusive and smooth and that technology is being used where it should be used and interpreters are being provided and show up and volunteer my time and go do outreaches and hang out with kids. It’s a beautiful part of my life.

‍Jay Ruderman: Thank you for your leadership there. I just wanted to end with talking about your new book. You’re the co-author of a book called Sensing the Rhythm, Finding My Voice in a world without sound. What will people learn from your book?

‍Mandy Harvey: This book is a collection of life lesson that I have painfully learned and they’re all connected with stories about my life. I have been through a trauma, and my life has changed dramatically. And I dealt with depression, and I’ve dealt with barriers and walls and you know, finding out about things that I can’t control and surgeries and so my goal for the book was to just be very honest. These are the things that are happening. These are the things that I’m choosing to learn from and how it’s made me stronger.

‍Mandy Harvey: And to be an encouragement to other people who are going through their own journeys and who are struggling on their own sides, or who just want to, you know, read something a little bit encouraging for the day.

‍Jay Ruderman: Well thank you Mandy Harvey. You are a beautiful soul and a beautiful person and I look forward to hearing more of your music and your story and I want to thank you for joining us today. This was really great.

‍Mandy Harvey: It’s beautiful to know that you guys are working so hard to help make the world a much better more inclusive place and the efforts that you guys are doing are just astronomical and they’re amazing, so thank you I’m honored to have been able to chat with you today.

‍Announcer: All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple podcast, Google Play, Spotify and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast? Be sure to tweet @JayRuderman

Jay Ruderman:
On today’s show, why, until just a few weeks ago, did Paralympic athletes earn only 1/5th the amount of money for winning a medal, compared to their Team USA counterparts?

Announcer: ALL INCLUSIVE. A podcast on inclusion, innovation and social justice, with Jay Ruderman.

Jay Ruderman: Welcome to ALL INCLUSIVE, a podcast on inclusion, innovation and social justice. I’m Jay Ruderman, your host. A few weeks ago, the US Olympic committee board finally voted to pay Olympians and Paralympian’s equally. On today’s show, we’ll go behind the scenes on what led to this historic decision. Joining me today, is Jenny Sichel. She’s a Paralympic silver medalist, a four time world silver medalist. Welcome to the show Jenny.

‍Jenny Sichel: Thank you.

‍Jay Ruderman: How did you make the transition to becoming a member of the Paralympic team?

Jenny Sichel: That was actually a little, bit random, but a little, bit of dedication and hard work. I was at a race, and happened to accost the National team coach at the time. After the race, she was like, “Wow. That was really good.” No clue who she was. It ended up a couple weeks later, I got a call from her saying, “Hey. You should come try out for the team.” This was in 2010. That was when I made my first national team Para National team.

‍Jay Ruderman: Michael Phelps, the most successful Olympian athlete of all time, told CNN that he practices every single day in the pool for three to six hours. In addition, he spends four to five days working out, every week out of the pool. Maybe you can tell the audience a little, bit about what is involved in your daily schedule, in terms of training for the Paralympics.

‍Jenny Sichel: Yeah. Depending on the time of year … We have our on seasons and our off seasons. Generally, we train two to three times a day, six days a week with the seventh day being more of an active recovery. Those two to three times a day, will include going out on the water once or twice, for about two hours or so. The third time is generally an indoor weight session, which encompasses about an hour and a half.

‍Jay Ruderman: Do you ever encounter a stigma that Paralympic athletes are not athletes on the same level as Olympic athletes?

‍Jenny Sichel: Absolutely. I think every day, we think about that. We think about, sort of, the view that others have of Paralympic athletes, as in, they’re a charity, or they’re inspirational for even getting up off their couch, because they have some type of disability. In reality, Paralympic athletes are athletes.

‍Jay Ruderman: Can you explain to the audience this issue of equal medal payout.

‍Jenny Sichel: Basically, what was happening was, for every medal, gold, silver or bronze, that an athlete would earn at the Olympics or Paralympics, the athlete would get some type of medal payout. What I found out, when I made the team in 2016, and I was talking with my teammates that Paralympians only were getting 1/5th of the amount that the Olympians were getting. I believe the Olympians were getting 37,500 for a gold medal, whereas the Paralympians were getting 7,500.

‍Jay Ruderman: How did you first find out about the disparity of payout for medals?

‍Jenny Sichel: The first time I found out about it was back in 2010, when I first made the team. Some of the athletes were talking. There were murmurs about, “Oh, no, we don’t get an equal payout,” because we were talking about 2012 and upcoming Paralympics at the time. I was like, “I don’t believe that.” The US is so good with kind of equality amongst all different branches of diversity. This can’t be a thing. And then, come 2016, we win the silver medal and I find out, I’m only getting 3500.

‍Jay Ruderman: What would an Olympian, who won the silver medal in rowing get?

‍Jenny Sichel: I believe they got 15,000.

‍Jay Ruderman: Okay. When you found that out, what was your initial reaction? What was the reaction of your teammates?

‍Jenny Sichel: I think the pretty obvious answer to that is, we need to equalize the payout for the medals. You go from and you try to figure out how are we going to accomplish this? For me, what I tried to do, was talk to a lot of people about it, and really try to raise awareness. I went to an employee of the Ruderman Family Foundation, which I had been associated with prior to, because of a group called, Link 20. Together, we took this issue to this Link 20 group, which is a group of younger advocates for the disability community to make sure that people with disabilities are getting their issues answered, and having a say in things. We brought this issue to them and said, “Is this something that we should address?”

‍Jay Ruderman: What steps were taken at that point?

Jenny Sichel: At that point, a letter was sent to the US Olympic Committee, signed by the Link 20 members. We were also able to put out a promotional video on social media, through Link 20, that got over 200,000 views.

‍Jay Ruderman: What response did you get from the US Olympic Committee?Jenny Sichel: Initially, we were told that they heard our voices, and that this equal medal payout would take a while. There were going to be steps taken, as in levels of payout, increasing the Paralympic payout slowly, to eventually equal the Olympic payout. And then, I would say a couple weeks ago, we got the news that all of, the payouts were gonna be the same. I believe I was actually at a World Championship’s at the time. I got the news over email.

‍Jay Ruderman: Did you talk to your fellow teammates or other Paralympians?Jenny Sichel: We were all were kind of taken aback that it happened so suddenly. We went to the other athletes that we were training with at the world championships and said, “Hey. We’re equal on this front.”

‍Jay Ruderman: Let’s talk about the impact that this huge win, which happened very quickly … How does that impact society’s view of people with disabilities?Jenny Sichel: The Olympics is such a huge part of US culture, that when something shifts, with the US Olympic committee, people take notice. By having the public know about this disparity that occurred, and then having the US Olympic committee, fix the disparity, it sends a huge message to the population.

‍Jay Ruderman: What about any issues that still need to be tackled?Jenny Sichel: I think, right now it’s one step at a time. I’m really excited about the equal medal payout. I think the next issue that needs to be tackled is the equal media coverage for the Paralympics.

‍Jay Ruderman: Is there … Since you’re a member of Link 20, is there a plan to grow this?Jenny Sichel: There’s definitely a plan to grow it and make it this independent entity.

‍Jay Ruderman: How does someone … Let’s say someone listening to the show, wants to become an advocate, how do they connect with Link 20?Jenny Sichel: You can go onto the Facebook page, which is a huge part of Link 20. @Link20USA, or you can go on email and email, advocacy@link20.org. I encourage everybody to come be a part of Link 20, and work together to create a change. I want everybody to know that if you have any questions about the Paralympic community, about the Olympic community, about disability advocacy or rights, please feel free to reach out and feel free to ask on Twitter, Instagram. My handle is @JSICHROCKIN.

‍Jay Ruderman: I commend you on this huge victory.Jenny Sichel: Thank you very much Jay.Announcer: You’re listening to ALL INCLUSIVE with Jay Ruderman. You can learn more, view the show notes, and transcripts at Rudermanfoundation.org/allinclusive.

‍Jay Ruderman: Please remember to subscribe, rate, and review us wherever you are listening. Joining us now, is Meir Zimmerman, the advocacy coordinator at the Ruderman Family Foundation. First of all Meir, what is Link 20? What does it stand for?Meir Zimmerman: Link 20 was a project started by the Ruderman Family Foundation. Link 20 came from the idea of linking the 20% of the population with disabilities to the rest of the population and vice versa. The idea behind Link 20 is really to create a, grassroots, social justice movement around disability inclusion. Link 20 is made up of hundreds of young advocates with and without disabilities that are passionate about social justice, they’re passionate about disability inclusion. They’re looking to create change within their community on a national scale and on a global scale.

‍Jay Ruderman: Meir, what were your first thoughts, when Jenny brought this issue of the disparity in medal payouts to Link 20?
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‍Meir Zimmerman: I couldn’t believe it. It was such a disparity. It really speaks akin to the value that, I think, even the government sees people with disability, how they value them. We initially saw this as a major issue. We didn’t wanna decide whether, or not it was a project for Link 20 without asking Link 20’s network. We sent, an email to the entire Link 20 network, to several hundred advocates around the US and we wrote, “This is the issue. What do you guys think about it?” There was an outpouring of support for Jenny and other Paralympic athletes. People really thought that this issue didn’t just speak to the pay disparity, but it also spoke to a lack of value of people with disabilities in general.

‍Meir Zimmerman: The Paralympics is the third most watched sporting event in the world, after the FIFA World Cup and after the Olympics. It is globally one of the largest sporting events, yet, we don’t value Team USA athletes as much as the other athletes. We organize together as a group of advocates in writing a letter to the United States Olympic Committee. We addressed it to the chair of that committee, Larry Proust. We sent that letter to him. We actually created two videos and we pushed it out on social media.

‍Meir Zimmerman: In the first week, we had over 250,000 views on the video. It was shared widely, and really helped create awareness around this issue. We then, continued to follow up with the US OC, the United States Olympic Committee. As Jenny said, it was around the time of World’s that we got new through the grapevine. It wasn’t official yet, but they were coming up for a vote. They didn’t just change it. They retroactively went back to the last Paralympic games in South Korea. They’re gonna be giving equal pay to all those athletes. I think it’s over 1.2 million dollars that’s being added to the payout to those athletes.

‍Jay Ruderman: What are other similar advocacy responses that are in the making, that Link 20s looking at right now?

‍Meir Zimmerman: The most recent thing that we’re working on is … There was recently a story that was brought to our attention. Justin Gallo, an athlete with Cerebral Palsy. He’s a runner for the Oregon Ducks, a college team. He was signed by Nike as their first athlete with Cerebral Palsy to be signed by Nike to a promotional deal. In the video they released, they wrote that Justin suffers from Cerebral Palsy. This story was one of the most widely reported stories in the past couple of days, in the entire US. It’s got that inspiration vibe.

‍Meir Zimmerman: What we really feel was needs to change here and what the Link 20 members rallied around, this is the biggest response we’ve ever had from Link 20 advocates on trying to change things, is they wanted to change the wording in that video from, suffers from, to has. Justin has Cerebral Palsy. He doesn’t suffer from Cerebral Palsy.

‍Meir Zimmerman: I think it’s really important to understand that I don’t think it’s just about changing it in this one story. I think we’re hoping that by making noise and creating awareness around this issue, that in the future, whenever a news publication, or whenever a production company, or whenever a media outlet is reporting on a person with a disability, that they check and they make sure to use the right language.

‍Meir Zimmerman: Link 20 as a whole is creating a video and we’re also writing a letter directly, that we’re giving to the production of Nike. We’re asking them to create change and to change the language in the video currently, and to also consider having a conversation with us about language in general. The impact of this is that, in the future, when Nike and other companies like Nike are looking to create media around people with disabilities, that they really talk to the disability community, cause that’s the missing piece.

‍Jay Ruderman: It’s so important. I just recently gave an interview to Forbes about the same issue. Members of the media are just the general, public. Historically, people with disabilities are looked at as inferior and suffering, or deserving pity. It’s a whole education process that has to be down with the media, in addition to the general, public. What’s the next thing for Link 20?

‍Meir Zimmerman: Link 20 is working to be able to rally behind somebody who brings us an issue that we all agree is an issue, working on how we can respond to that in a concise and in an impactful way, so that we can hopefully create change, in the public perception. One of our big projects coming up is the MIT leadership course. It’s called, Leadership in the Digital Age. We partnered with MIT. The ultimate goal of that is to create influencers, people with disabilities that can on social media, helping create change, change public perception, and they’re part of Link 20, so that they can use the platform and resources we have to create change. That’s ultimately what’s next, hopefully creating a difference.

‍Jay Ruderman: Thanks Meir. I appreciate your passion and your dedication and your desire to be a change agent. Thanks for joining us.

‍Meir Zimmerman: Thank you for having me. Thank you for supporting Link 20.Announcer: All Inclusive, is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find ALL INCLUSIVE on Apple podcast, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org/allinclusive. Have an idea for a podcast, be sure to Tweet @JayRuderman.