Shining the light on activism

Jay Ruderman:
As a parent of four kids, I want to know will them playing youth football or other contact sports lead to a disability?

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

‍Jay Ruderman: Thank you for joining me for another episode of All Inclusive. If you enjoyed this podcast, please subscribe, rate, and review us wherever you’re listening.

‍Jay Ruderman: Joining me today to discuss this extremely interesting topic of football and disability is assistant professor of neurology at the Boston University School of Medicine, who works at the Boston University CTE Research Center and is the coauthor of multiple papers on this topic. Dr. Michael Alosco, welcome to the show.

Michael Alosco: Thank you for having me.

‍Jay Ruderman: So let’s start off by telling our listeners what is CTE.

‍Michael Alosco: Sure, so CTE stands for chronic traumatic encephalopathy. It’s actually a progressive brain disease that’s associated with repeated hits to the head. These repeated hits to the head are such as those that you see in American football or other contact sports. But it’s a disease that’s similar to Alzheimer’s disease, but distinct in many ways.

‍Jay Ruderman: At what age do people develop this disease?

‍Michael Alosco: That’s a great question. The disease really develops across a wide range of ages. We’ve seen it as young as in 20s and going all the way up to the lifespan.

‍Jay Ruderman: What are the symptoms or what are the implications on their daily lives?

‍Michael Alosco: It’s very similar to these other neurodegenerative disease where you get these progressively worsening symptoms of memory problems, forgetfulness, problems with executive function or these higher-order problems like multitasking, problem solving, as well as disturbances in behavior and mood. So often, what we see is kind of the short fuse or aggressive, explosive behaviors, depression. These are some of the symptoms that we’ve been seeing in CTE. They seem to worsen and worsen over time, worsen with age, and eventually reach to the point where they lead to dementia. Dementia is a … It’s a clinical syndrome where these cognitive and these behavior and these mood problems reach the point where it starts to interfere with a person’s life. So it starts to interfere with their ability to drive, pay bills, take care of themselves.

‍Jay Ruderman: Okay, and how was the connection between contact sports and CTE first discovered?

‍Michael Alosco: Actually, despite what it may seem, it’s not actually a new disease. Really, it can actually be dated back to 1928 when Dr. Harrison Martland described this syndrome of clinical symptoms in boxers or fighters. And really, from 1928 and on, there’s other terms like dementia pugilistica. That’s really describing these progressively worsening, thinking memory motor problems that were found in boxers. And actually, the neuropathology of CTE was observed in the 1940s in boxers.

‍Michael Alosco: But really when this issue came to the forefront of society, scientific attention, and so forth, was in 2005 when pathological changes of CTE were first described in a former NFL player. Since then it’s really taken off in terms of coming to everyone’s attention.

‍Jay Ruderman: For all those parents out there, does playing youth contact sports mean that your child will inevitably develop CTE?

‍Michael Alosco: No. Playing youth contact sports on its own, we do not think will lead to this progressive brain disease. We’ve done some research on looking at the association between when you start to play tackle football, playing at a youth levels before the age of 12. These have all been in people who have gone on to play football to a much greater level, so people have gone on to play high school, college and mostly professional football as well.

‍Michael Alosco: We see an association where the younger you start to play, it seems to increase your vulnerability to later life symptoms and cognitive and behavior, mood problems. But playing youth football or playing youth contact sports on its own is unlikely to be sufficient to result in CTE.

‍Jay Ruderman: Let’s talk a little bit about, since this is your field of study, the diverging opinions. I’m sure you have colleagues who are like, “Absolutely not. This is a danger to our youth and others who are like, ‘It’s fine.'” So can you talk about the debate within your science?

‍Michael Alosco: One of the issues is that … I described being around since 1928. But really, we are in the beginning stages of characterizing and defining the long-term consequences participating in contact sport. So it’s a relatively emerging field. As a result, I think we don’t yet fully know. Does contact sports directly lead to these long-term problems? That’s something we’re still trying to figure out through longitudinal studies.

‍Michael Alosco: Right now, there are some people who are not sure yet about the association between contact sports and long-term consequences. However, our data does really raise the possibility and really suggest that there is a link, and this is something that we’re going to further explore in the future.

‍Jay Ruderman: Okay, so since research on CTE has become more public, what shifts have you seen in the decisions of parents to let their children play football and other contact sports? And what changes have you seen in these sports themselves and the people that are running them?

‍Michael Alosco: In terms of the first part of the question, I think we do know that there’s a decline in participation rates and in things like youth football or even high school football. I think that the research on CTE, the research on the long-term consequence of contact sports has led to quite a bit of awareness to the potential risk associated with participating in contact sports. But at the same time, we also … This goes back to your question on diverging opinions.

‍Michael Alosco: At the same time, we also like to advocate that there’s a lot of benefits associated with playing sports. You know, leadership, psychosocial, psychological benefits, and it’s kind of bringing that risk benefit relationship. So that’s something that’s always important to keep in mind. In terms of your other question about what have we seen at the organizational level, so again, there’s been a ton of awareness. There certainly have adopted protocols to better improve detection and management of concussion.

‍Michael Alosco: But perhaps this disease isn’t really about concussion, and that’s one of the things we’re always trying to educate the public on is that CTE is associated with repeated head trauma. So these are subconcussive hits. When I say subconcussive, those are the tiny hits to the head that don’t result in immediate symptoms we think result in some type of injury to the brain. So if you think about linemen on every down and every play, they’re hitting their head. No symptoms right away, but we think that there is some type of injury going on to the brain.

‍Michael Alosco: Those are the types of hits that football players can have hundreds, if not thousands per season. So really, how you prevent those types of hits in the game of football is a complicated question, and I don’t know if they can be prevented. They can certainly be limited. Other contact sports like soccer and so on could certainly be modified because the repetitive hits aren’t as inherent to the game.

‍Jay Ruderman: So is there a number associated, like a certain number of hits means that you’re all that more likely to develop CTE in your life?

‍Michael Alosco: Yes, so that’s what we’re looking at. Is there a threshold in terms of years of play or in terms of number of hits you hit your head? I don’t think we know that answer yet, but I think that has very important public health implications by getting at that exact question.

‍Jay Ruderman: So football is a huge part of the American culture. The NFL owns a day of the week. College football is the biggest thing in many communities and states around the country. You as a scientist, and in the field of medicine, what’s the pushback? I mean, it must be tremendous when it’s such an ingrained part of our culture.

‍Michael Alosco: That’s a good point, especially when you’re trying to adopt change in a game like football. It can be really hard because it is so part of our culture. So the more research that has come out I think has really started to resonate with a lot of people in the country. But it is a difficult thing. I think change in any type of behavior is hard, and at the end of the day, people are always going to engage in risky behaviors. How long have we known about the long-term consequences of smoking? People still smoke.

‍Michael Alosco: Certainly, there’s a lot of awareness to that, and I think we’ve gotten better, but people still smoke. We’re also not advocating for things like removing contact sports or removing tackle football. I think that’s ridiculous. I think what we’re trying to do is conduct science and conduct research to look at the long-term effects or look at the risk and then figure out a way is how can we minimize that risk? How can we benefit from all these benefits that team sports have but at the same time minimize someone’s risk?

‍Jay Ruderman: So our professional sports, college sports, even youth sport, are they in contact with you and others in your field to take your research seriously and try to think about modifications to the sport?

‍Michael Alosco: One of the organizations, Concussion Legacy Foundation is a non-profit who works with a lot of these organizations to figure out a way to minimize this risk. In fact, one of the things that CLF or Concussion Legacy Foundation has done is they recently got heading in soccer to not be allowed until after the age of 10, I believe. They’re right now running a campaign where they’re looking at flag football under the age of 14, so not playing tackle football until high school.

‍Michael Alosco: So yeah, we work closely with them through outreach, but they’re interacting with the different leagues, kind of push this change along.

‍Jay Ruderman: Some of the high-profile suicides and deaths of football players, how does that impact what you’re doing or the public discussion?

‍Michael Alosco: I think it raises awareness, certainly. I think suicide in particular is very complicated though. I think sometimes in the setting when a suicide happens, and there’s evidence of CTE, people are quick to link the two, but it should be noted that suicide is a very complicated construct that’s never caused by one thing. So we really don’t know the relationship between suicide and CTE.

‍Jay Ruderman: Okay, let’s talk a little bit about your research. Where are you at this point? If you can divulge, what are some of your main findings and which direction are you heading?

‍Michael Alosco: I mean, most relevant to what we’ve been talking to today is about youth football. We’ve had a series of papers come out. One in 2017 looked at the relationship between the age you start to play football and long-term cognitive behavior and mood consequences in 214 former, amateur and professional football players. We found that the younger you started to play, the more problems with things like depression, apathy, reported executive function emerged later in life.

‍Michael Alosco: Then most recently, we also looked at the relationship between when you start to play and the onset of symptoms and CTE in deceased football players who were diagnosed with CTE after death. So CTE right now can only be diagnosed through an evaluation of the brain after death. So, post-mortem examination. It included 246 deceased football players. 211 had CTE. We actually did not find a relationship between when you start to play football and disease severity. But the younger you started to play did in fact correlate with earlier onset of cognitive and behavioral symptoms, and that’s a really complicated set of findings.

‍Michael Alosco: But it suggests to us that in the context of individuals who play football for a long time, the younger you start may increase your vulnerability to the symptoms. But it could also extend to Alzheimer’s disease. It might be a modifying variable where your vulnerability becomes increased. So in the research that we’ve done, we’ve actually found that the younger you start to play football has been associated with earlier onset of cognitive behavior and mood symptoms in diseased football players diagnosed with CTE.

‍Michael Alosco: In fact, those who started playing before the age of 12 on average had onset of symptoms 13 years earlier than those who started playing football after the age of 12.

‍Jay Ruderman: So is that the cutoff? Is that a recommendation? You know, don’t let your kids play before 12? Or is it a moving target?

‍Michael Alosco: Almost all of our studies have focused on the age of 12, and the reason being is that before the age of 12 is a time of really peak neurodevelopment, so peak brain development where the brain is really rapidly growing and might be most vulnerable to injury. We focused on age 12. Is it the magic number? If you start playing at 13, is it going to make a difference or 11? We don’t think that. But it’s a number that we focused on, and we found some pretty powerful findings across several of our studies.

‍Jay Ruderman: Just out of curiosity, the helmet. Have you looked into the redesign of the helmet? I know there are several different new helmets that are coming out. Are they going to potentially impact this? Or is it a non-issue?

‍Michael Alosco: Helmets do a great job of preventing skull fractures. A concussion or even a subconcussion occurs when there’s an impact or a force applied to the head, and it causes the brain to move around within the skull and rotate and bounce around. So it’s unclear how a helmet can actually prevent the brain from stopping to move within the skull. It can definitely prevent you from getting skull fracture, but we’re not sure, and hopefully the technology will exist and will develop to do so. But it’s unclear how it can actually prevent a concussion or a subconcussive trauma.

‍Jay Ruderman: Can you talk about the scope of your study? How many people, former football players or current football players you worked with? And, what was the willingness of people who’ve devoted their lives to football to work with you on this issue?

‍Michael Alosco: Sure, so I described two studies to you, both of those looking at age of first exposure, youth football. But we have a lot of the larger ongoing studies. At the CTE Center, we have the VA-BU-CLF Brain Bank. That’s directed by Dr. Ann McKee, and that brain bank includes individuals who donated their brains either before they passed or after they passed by family members to better understand chronic traumatic encephalopathy. So everyone who donates their brain has a history of repeated head trauma. That can be from football, other contact sports, military service, domestic violence, and so on.

‍Michael Alosco: In that brain bank, there’s over 600 cases, and we’ve reported in the literature on … In 2017, there’s a JAMA paper that identified CTE in 177 out of 202 former football players. So that’s a very large study looking at the neuropathology of CTE. We also have studies looking at living subjects, and these are mostly former football players. These are being led by Dr. Robert Stern. There is one study that’s now concluded. It was funded by the NIH. It’s known as the detect study and that looked at about 100 former National Football League players and about 30 controls.

‍Michael Alosco: There’s an ongoing study right now also funded by the National Institutes of Health. It’s a seven-year multi-site study, and that’s looking at over 100 former NFL players. It’s also looking at college football players and controls. We’re looking at it both in life and also after death, and we have quite a bit of people who are participating. To get at your second question, the willingness is actually very high. A lot of these people who are participating in research, they are individuals who are eager to participate, to learn and to understand what are the long-term consequences of playing football.

‍Michael Alosco: Some of them are concerned on their own, and because no treatments, or you can’t diagnose this disease during life, this is one of the only ways that they can get involved and potentially try to get some answers.

‍Jay Ruderman: We talked a little bit about coming up against the culture. You’re also coming up against a huge industry that’s worth billions of dollars. Do you feel that pressure in terms of continuing your research?

‍Michael Alosco: I don’t think so. I think there’s certainly … The industry and financial side of things in our research. But I think our research is really focused on the science and really figuring out what are the risks, what are the long-term consequences of playing contact sports. We work through peer review and rigorous scientific process to conduct our studies. So in that sense, I don’t think we feel any pressure. Our primary pressure is addressing this public health issue. From that standpoint, we want to be able to figure out this disease. We want to be able to diagnose it during life and eventually get to treatment and prevention.

‍Jay Ruderman: If one of my young children wanted to play football or another contact sport, and I asked your opinion. What would you say to me and other parents who are in a similar position to myself?

‍Michael Alosco: We do get that question a lot, particularly about youth sports. From my perspective, I would not allow my child to play football. I think it’s hard to modify that game, especially at a young age. But that said, we are very aware of the benefits. We first like to educate. We want to make you aware and make everyone aware of the risks or the potential risks and what it could potentially be associated with. So I think it’s important to know those risk. Then as a parent, you make an informed decision. I think all parents try to do what’s best for their children.

‍Michael Alosco: So then I think they have to ask themselves. I think we have to ask ourselves, “Does it make sense to bring your kid to play football where they’re repeat hitting their head over and over again? Does that intuitive intuitively makes sense?” I think those are the questions we have to ask, and I think conducting more research will help raise awareness to that.

Jay Ruderman: If you remember the history of prevention of smoking, first, people were made aware of the risks and the potential consequences, and then it began to be legislated in terms of high taxation and restrictions. So juxtaposing that to football, what do you see looking into the crystal ball about the landscape of football changing over the next, let’s say, 10 years?

‍Michael Alosco: So I’m going to get to your question, but one point I do want to make though is that we’re talking about the CTE. We’re talking about its association with contact sports. Not everyone who plays contact sports or expose repeated head trauma goes on to develop problems. There’s plenty of people, millions of people who are very successful and are doing just fine, and it’s what we’re doing now too is to look at the risk factors that interact with this head trauma to get you to the point of CTE.

‍Michael Alosco: But bringing it back a little bit to your question, I think you’re right. I think at some point there’s going to need to be a legislative effort in terms of, “Should there be no tackle football as a youth?” I’m doubtful that will happen without legislation, and I’m not sure because one of the reasons being is that there’s been studies that show just socioeconomic status. So that will influence whether or not flag football can be an alternative method.

‍Michael Alosco: Some people might not have access to such programs. To really get changed broadly across the board, I think you’re right in that it might have to go through legislation. I think you’re going to see a lot more changes. You’ve seen a lot of changes already to the game of football. But I think there’s going to be more changes to make it safer, hopefully. So I think with more research, there’s going to be more awareness, and there’s going to be more changes to the game. Potentially, some of those changes through legislation.

‍Jay Ruderman: Is there anything that we haven’t covered that you really want the public to understand about this issue that’s really maybe not well understood?

‍Michael Alosco: I think the most important piece of information that we’re always trying to advocate and that’s not always clear is that we don’t think that CTE is a consequence of a single or even multiple concussions or traumatic brain injuries. We really think it’s related to years and years of exposure to this repeated head trauma. The type of head trauma where you can have hundreds of thousands of hits per season every year for 20 years or more. I think that’s really important because I think there’s concerns that if I have a concussion, “I hit my head today, or I had a concussion yesterday, and then am I going to get CTE?” We don’t think that’s the case, and we want to make sure people are aware of that.

‍Michael Alosco: The other thing too is that just because you play contact sports or just because you play football doesn’t mean you are going to get CTE. We think that this is a disease that might start with some exposure to these repeated hits to the head and then interact with a bunch of different other risk factors, genetics, lifestyle, a host of different risk factors that interact to lead to this disease. So it’s just not one pathway or one thing.

‍Jay Ruderman: Well, I want to thank you, Dr. Alosco for joining me today. This was a fascinating discussion, and I think it’s food for thought for millions of people across America and in other parts of the world, and we look forward to following your research.

‍Michael Alosco: Thank you for having me.

Jay Ruderman: Welcome to All Inclusive. I’m your host Jay Ruderman and on today’s show we will address self-driving cars. We all think of self-driving cars as a thing of the future. Maybe it came to The Jetsons, but they are reality. They are being developed and they will become a reality in the next coming years. We know that the American with Disabilities Act prohibits discrimination against people with disabilities, and yet we know that six million people with disability, according to a recent survey, have difficulty getting access to transportation. And we know that transportation is the key to employment in this country.

‍Jay Ruderman: Self-driving cars can provide an unprecedented mobility so that many people with various disabilities can enter the workforce. In order to talk about transportation and sort of broaden the issue of why it’s so important for employment and inclusion and preventing segregation of people with disabilities, I’m joined by my guest. A program officer at the Ruderman Family Foundation, who has received her PhD in Applied Developmental and Educational Psychology from Boston College. I welcome Dr. Miriam Heyman. And thank you for joining us today.

Miriam Heyman: Thank you for having me.

‍Jay Ruderman: So Miriam, let’s talk about the big picture. Why is transportation such a big deal for people with disabilities?

‍Miriam Heyman: Well, I think you hit the nail right on the head when you said that this is an issue of civil rights and social justice. Mitchell Ross who was a transportation expert at New York University has been quoted as saying that, “In New York, it is far more important to have a MetroCard than a college degree for economic mobility.” Because as you pointed out, transportation is key to people’s ability to get to work. And almost two million people with disabilities in this country report never leaving their home. So this is an issue, transportation is an issue about basic dignity and independence.

‍Miriam Heyman: Google is developing technology for self-driving cars now and they offered a man in California with a disability a ride in a self-driving car and the Google team was prepared for an exotic request, but yet this person requested to go to the dry cleaners and to go to Taco Bell. So really this is about people’s basic ability to get to work, to live their life and to interact with the public.

‍Jay Ruderman: You mentioned like cities. So in Boston or New York or San Francisco or other cities that have major public transportation networks, some of them are more accessible for people with disabilities, some of them are less accessible, but those are in the cities. What about people in the suburbs and the rural part of America and other parts of the world, who don’t have access to public transportation and in essence are segregated?

‍Jay Ruderman: You mentioned like cities. So in Boston or New York or San Francisco or other cities that have major public transportation networks, some of them are more accessible for people with disabilities, some of them are less accessible, but those are in the cities. What about people in the suburbs and the rural part of America and other parts of the world, who don’t have access to public transportation and in essence are segregated?

‍Miriam Heyman: Yes. Absolutely. But first I think it’s important to question that assumption that in big cities where there are these major transportation networks, that these transportation systems are actually accessible. But in New York City the transit agency reported that within a three-month time period in 2014, there were 2,646 elevator outages and more than 6,000 escalator outages. So even when there are these networks, we know that the public transportation systems are not living to that potential. And you’re right, that’s exacerbated in rural areas, where these public transportation systems are non-existence.

‍Miriam Heyman: Paratransit services are operated by cities and states and they provide door-to-door transportation for people with disabilities, in both urban and rural locations, but they don’t give people the basic freedom to come and go as they please. You have to call and reserve a ride at least 24 hours in advance in many places. So people can’t run out to the grocery store to buy a carton of milk. We’re talking about basic dignity and independence and freedom to come and go as you please.

‍Jay Ruderman: So do you see self-driving cars as something that’s inevitable?

‍Miriam Heyman: So I think it’s very possible that we’ll get there, but I think it is not inevitable. It’s that the disability community will be included in the design to reach that point. Currently, the cost of retrofitting any car to make it accessible cost between $20,000 and $80,000. Meanwhile, people with disabilities are more likely to have lower incomes and live in poverty than people without disabilities. So when cars are designed from the beginning, from an accessibility standpoint, that cost, that $20,000 and $80,000 is much, much smaller. And so the time to consider including a ramp or a lift system or including an auditory system for users who are blind is now.

‍Miriam Heyman: Local governments have considered laws which will require a licensed driver to be in self-driving cars at all times, when the vehicle is in use. That would prohibit people who are blind, people who have epilepsy from ever benefiting from a self-driving car. Luckily, the United States Department of Transportation has issued policy guidelines stating the view that we should not require a licensed driver to be in the car, but this policy guidelines is not binding. So we encourage the federal government to solidify its stance on this issue, but also the government needs to hear from the disability community. So we need to organize around this legislative issues and also to organize around our priorities for the design of self-driving cars, to make sure that they are being designed with users with disabilities in mind.

‍Jay Ruderman: It’s a big issue. It’s an issue that’s coming, that could be a real game-changer. Miriam, thank you so much for laying out the importance of transportation in terms of full inclusion and employment for people with disabilities. I think this made it much more clear to everyone listening as to why this is so important and why the disability community should be fully engaged as this technology develops and is rolled out. So thank you very much for your time today.

‍Miriam Heyman: Thank you for having me.

‍Jay Ruderman: So I’m going to welcome our second guest today, who is the vice president of Autonomous Vehicle and Mobility Innovation at Securing America’s Future Energy. He’s one of the experts behind and the co-author of the Ruderman Family Foundation White Paper – Self-Driving Cars: The Impact on People with Disabilities. He is joining us today from Washington DC, where he’s working with government officials to address these challenges. Amitai Bin-Nun, thank you for joining me today.

Amitai Bin-Nun: Good afternoon Jay. It’s a pleasure to be here. Thank you for having me.

‍Jay Ruderman: So let’s get into an issue that maybe a little bit confusing and futuristic for some people, but first let’s talk about self-driving cars. Let’s back up before the self-driving cars. What are the obstacles to transportation for people with disabilities?

‍Amitai Bin-Nun: We’re in a very exciting time now in transportation because new technologies, whether it’s self-driving cars or innovations like Uber and Lyft have created new options for people to get access to transportation and whether we’re talking about people with disabilities or the rest of the population, the change is happening very rapidly and this offers the potential to address some of the obstacles with transportation that have impact with people with disabilities.

‍Amitai Bin-Nun: And the disabilities community are very diverse, that encompasses many sub communities. Each of which have different obstacles due to transportation. So if you talk to members of the blind community, they will tell you that they don’t have the ability to drive because they cannot see the ride. For many wheelchair users, they may not have the ability … They may be able to use modified controls to drive or retrofit a vehicle, but those are very expensive, but then they also need to retrofit the vehicles to be able to store their wheelchairs easily.

‍Amitai Bin-Nun: And when it comes to non-driving modes of transportation, like public transportation or Paratransit, their obstacle’s there as well. Whether it is the accessibility of subway stations or bus stops or the infrequency and inflexibility of Paratransit services. We’re finding that across the board, people with disabilities travel less. It’s more expensive when they travel and this has a ripple effect on their ability to work, their ability to socialize, their ability to vote. So it’s really exciting that transportation now has the ability to address some of those negative outcomes.

‍Jay Ruderman: And this is a huge drag on our economy, participation in our electoral process. The buying power of people disabilities. I mean I think we’re aware of the major limitations of some of the public transportation systems in our country. Elevators that don’t work, subways that are inaccessible, buses that don’t stop for people with disabilities or don’t have the right technology to bring them into the buses. But let’s talk about technology and your focus and how technology is developing to overcome these obstacles to make transportation more accessible for people with disabilities.

‍Amitai Bin-Nun: I mean let’s talk about some of the lower hanging fruit and some of the innovations that are already on the road today, and then a little bit about some of the innovations that are hopefully coming in the near future, both of whom could use the engagement of advocates for the disability community with policy makers, to make sure that these innovations come as quickly as possible and also come in a way that benefits the community and as inclusive as possible to the community.

‍Amitai Bin-Nun: Certainly, we recognize that Uber and Lyft are far from perfect and have not put in stringent accessibility requirements for their vehicle fleets, but most of those platforms have accessible services that increase the access of accessible vehicles for people with disabilities and also for many members of the community. For example, many members of the blind community have told us that Uber and Lyft are godsend for them because as long as they can use an interface to summon the cars, their able to get in them and go where they want to go. Now, this doesn’t work for everyone. If you need a wheelchair accessible vehicles, those are harder to come by in the platform, but those have certainly made progress and now there are more options and more accessible option.

‍Amitai Bin-Nun: Some of the innovation in how we dispatch vehicles to where and when people will need it are beginning to filter in to the Paratransit community. Lyft is working with some transit agencies to get some of those software onto Paratransit scheduling so instead of having to schedule Paratransit 24 hours in advance and having a one hour window in which the ride may come, in some of these pilots, the lead in times for requesting a ride and the windows in which they might come are narrower.

Jay Ruderman: So that’s good news that the private sector, with Uber and Lyft are making transportation more accessible for people with disabilities, but let’s transition and talk about autonomous vehicles. Many people think of autonomous vehicles … I mean they know that they’re in the process. They hear about vehicles being developed, but it seems very futuristic. When are they coming?

‍Amitai Bin-Nun: I think we’re already seeing pilot deployments of vehicles with no drivers in limited areas. Now some of them are used as shuttles to get people from one location on their campus to another. So you could see that being very useful in the senior community or in a hospital campus or in military base. And those are actually already in pilot use. And in terms of getting their broader use, so where you could think about taking them from one place to another, we’re seeing the very earliest pilot deployments right now in Phoenix, Arizona. And my sense is that, that is going to roll out and expand in cities across the U.S. over the next 5 to 10 years.

‍Jay Ruderman: And what about some of the legislation that has been sort of detrimental to people with disabilities and as self-driving cars become more reality? Saying for example, someone is blind and does not have a license is prohibited from using an autonomous vehicle by themselves. How do you get around that type of legislation to make these vehicles more beneficial for people with disabilities who can really benefit from them?

‍Amitai Bin-Nun: This is not a process that happens by itself. Legislation regulation don’t write themselves and the creation of laws and their impact on autonomous vehicles and on people with disabilities is going to be shaped by the groups that show up and make the case and argue for how did the regulation should impact people and their lives. And so we’ve seen … Actually have seen here in Washington D.C. a lot of engagement by the disability community around self-driving cars. There’s that many advocacy groups that represent disability and just from the National Federation of the Blind to the California Foundation for Independent Living Centers.

‍Amitai Bin-Nun: I’ve been really at the forefront of talking to legislators, talking to regulators about the promise of autonomous vehicles, both generally and then specifically talking about what measures in regulation or legislation would make sure that as many of the benefits as possible for people with disabilities will be preserved as these vehicles become a reality.

‍Jay Ruderman: So do you feel the governments are listening to the disability community, understanding the real need that these vehicles can transform the lives and the economics of the disability community?

‍Amitai Bin-Nun: I think there’s certainly a recognition of that in important policy circles. The Department of Labor, for example has a fairly robust initiative, where they’re looking at how they can use autonomous vehicles to help people with disabilities. Safe co-hosting online dialog with them which welcome members of the public to suggest ideas for policies and initiatives that can help autonomous vehicles benefit the disability community. And we took in ideas from dozens of people and put them before a panel of experts to comment and presented it to the leadership of the department. Will states continue to require licenses in a driverless vehicles and might that prevent people who can’t get driver’s licenses from getting into these vehicles? Well, in response to some of these concerns that were raised by advocates, there is actually a provision in legislation before the Senate that would say that states cannot discriminate against people with disabilities in the issuance of driver’s license. That’s in explicitly aligned in legislation that being considered in the Senate. And the reason why that’s there is because advocates showed up and said, “This is something that’s important. This is something that should be in the legislation.” And that’s what they are.

‍Jay Ruderman: So let’s talk about some of these high profile accidents. Advocates of self-driving vehicles who’ve been out in the road and have been killed or hurt and the media has put a lot of tension on these. How does that help the movement to move forward with self-driving cars, especially with people disabilities? Does this set us back? Are these bumps on the road? How do you see it?

‍Amitai Bin-Nun: We absolutely believe that companies are developing self-driving cars, need to test them responsibly on public roads and need to take steps to ensure that they’re not subject in the public to undue risk by developing the technology. And from what we’ve seen, most companies in the space are responsible and are taking reasonable precautions and are being very thoughtful in their approach to putting the technology on the roads.

‍Amitai Bin-Nun: That doesn’t mean it’s going to be perfect and I think we needed to be prepared for autonomous vehicles not to be perfect. They still can be much, much safer than today’s vehicles, where we lost 40,000 people last year to vehicle crashes. We think of autonomous vehicles have huge opportunity to really reduce that number. And I think what we need to do is keep in mind the long game. What we’re trying to aim for? We’re trying to build a transportation system that’s safer, that’s more accessible for people with disabilities, more accessible for people who are kind of unlikely disadvantage and that’s a goal we’re investing in. And I think at the same time, we can do that at the same time as testing responsibly. And I don’t see any reason why we shouldn’t do both. And I think advocates to see this technology should say that we should push forward on the autonomous vehicle while at the same time testing responsibly.

‍Jay Ruderman: Obviously, the benefits to people with disabilities who do not have access to transportation especially if they are living in rural or suburban areas can be life-changing. What more can the disability community do to ensure that autonomous vehicles are as beneficial as possible to people disabilities?

‍Amitai Bin-Nun: That’s a great question. In the repost that we did together with Ruderman Foundation, we outlined three areas of action. One, for the disability community to take a more proactive role and then we also offer a specific recommendations to governments, both federal and state and to industry. But I think for the community I would say, it’s really important to advocate for yourselves. It’s really important to express the importance of seeing the technology come about and express that it’s going to be helpful too in your everyday lives. I think that is convincing to law makers. And I think there should also be, maybe you should try to be as specific as possible in identifying policies that might be helpful to make sure that these vehicles are beneficial as possible for the community, whether there was our special pilots designed to see how autonomous vehicles can help with accessibility or are working to push back on states that might not allow these vehicles to operate without a licensed driver in them. I think the more input we got I think the more effective it’s going to be in changing the minds of legislators and decision makers.

‍Jay Ruderman: So one last question Amitai, in reality, how long is it going to take before you see autonomous vehicles driving on the road?

‍Amitai Bin-Nun: I think it’s going to depend on where you are and what it’s used for. I don’t think there’s a simple answer like, “In two years, they’re going to be out there.” It’s not like they’re going to like suddenly drop out of the sky. I think already today, there are low-speed shuttles. So there’s basically like think about like monorails with wheels that can drive around without a driver in it. And I think part of the work that needs to be done is thinking about creative ways to use the technology that’s already available to be useful to people who don’t have full access to transportation. The ability for cars to drive themselves will come little by little, area by area. And I think the more proactive communities are about bringing that to them, I think the quicker it will come.

‍Jay Ruderman: Okay. Well, thank you for being with us today Amitai. It’s been very informative. Your insights and the important work you’re doing are going to be crucial, not only for the disability community but transportation itself in the United States and beyond. We all know that self-driving cars have the potential to revolutionize lives of so many. So we’ll keep following your progress and thank you. Thanks for joining us today.

‍Amitai Bin-Nun: Well, thank you Jay. It’s a pleasure to speak with you. I’m looking forward to continuing to work together on this fascinating topic.

‍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.

Jay Ruderman: The question we hope to get to the bottom of is this: why is banning straws so controversial?

Voice Over: [Music plays] 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 will address one of the most hotly debated topics across the world. From Scotland to Taiwan, environmentalists are fighting to ban single-use plastic straws in countries around the world to protect the environment. In the United States alone, cities like Seattle and New York City have banned plastic straws. States including California, New Jersey, Washington, Florida and Hawaii are considering the ban as we speak. The question we hope to get to the bottom of is this: why is banning straws so controversial?

‍Jay Ruderman: Today I’d like to welcome our guest to this podcast. She’s an attorney, a PhD candidate for social policy and management at Brandeis University, a writer, who wrote the first major article on the straw ban, ‘I Need Plastic Straws to Drink: I Also Wanna Save the Environment.’ Welcome Robyn Powell, and thank you for joining me today.

Robyn Powell: Thank you for having me.

‍Jay Ruderman: So our environment is in dire straights, plastics are a big part of the environmental crisis, and it seems like an easy fix to say, “Okay, plastic straws are a problem.” Why is it an issue? What concerns you about the ban on plastic straws?

‍Robyn Powell: So first of all, I completely agree. We need to give much more attention to our environment. It is definitely long overdue. But as a woman with a disability who depends on straws to drink, I am very concerned about the straw bans. The straw ban has really demonstrated the extent to which people with disabilities are often excluded from conversations that directly impact them.

‍Robyn Powell: Drinking is something that you need to do in order to live, and in order for me to be able to drink, I actually need to have a straw. And that is what is concerning to me right now. Myself and most people with disabilities, we rely on straws, it’s an accommodation when you’re out in public, I see it as. It’s not a luxury, it’s a necessity. And again, I agree that we need to be addressing the waste of plastic. I think there are many ways that we can be doing so without taking away straws from people with disabilities.

‍Jay Ruderman: So let’s break this down a little bit. First of all, some of the solutions that have been offered: paper straws, metal straws, a person with a disability can carry their own straws. Why are these not ideal solutions? And maybe you could talk a little bit about your own personal experience. Why is a straw… Not to get too personal, but why is a plastic straw so important to you?


‍Robyn Powell: Absolutely. So personally, I have arthrogryposis, which is a physical disability that affects my muscles and joints. I have limited use of my hands and legs, and I use a power wheelchair. I am physically unable to pick up a cup. So for me this, again, is really a personal issue. Now you’ve mentioned there are a number of alternatives, and some of them are paper straws and the metal straws. And for me, personally, both of those straws actually would work for me. I actually use those personally at my house. But what the issue is, is those don’t work for a lot of people with disabilities.

‍Robyn Powell: Paper straws dissolve very quickly, which becomes a choking hazard. You also can’t use them with hot beverages, so I can’t use them if I have a hot beverage. The metal straws are really problematic for people who have Parkinson’s or other involuntary movements. If they clench down while they’re drinking on a metal straw, they’re going to break a tooth, to be frank. So that is why it’s such an issue.

‍Robyn Powell: And then carrying straws around has been proposed. And that comes with its own slew of problems. First of all, we’re putting the onus on people with disabilities to now provide their own accommodations, which I see as fundamentally wrong, if not also illegal. We wouldn’t as a non-disabled person to bring their own silverware, is that something we’re gonna start doing next?

‍Robyn Powell: Not only is this putting the onus on you have to bring your own straw, but it overlooks the fact that people with disabilities are historically living below poverty level, so now we’re asking them to go out and purchase these reusable straws, which are more expensive than plastic straws. We’re also assuming, then, that people with disabilities will be able to carry their own straws. They’ll have to go home and have someone who can help them clean the straws. We’re just putting all these responsibilities on people with disabilities just to be able to drink, and I just think that that is unacceptable.

‍Robyn Powell: I agree, again, we need to be coming up with an alternative. I’m not at all disputing that. What I think is that we need to be working with the disability community and the environmental rights groups to try to come up with a solution that works for everyone. And just doing a flat out ban without engaging with the disability community is going to be harmful.

‍Jay Ruderman: So has that not happened, have these major corporations, municipalities, states who’ve taken this action, have they not consulted with the disability community?

‍Robyn Powell: Not until recently. Now that there’s been a lot more media attention I do see some engagement occurring. But it’s still disability rights activists having to push their way into the conversation, which is so common with so many things in this world. It was an afterthought. It was these unintended consequences that people with disabilities would be harmed. I’m really not sure that it was ever on anyone’s radar. I think that was a glaring omission probably. So at this point, people with disabilities are tying to push their way to the table. Again, it’s not that we are at all against the environment. We need the environment just like everyone else, but we also need to be able to drink, and that’s where I think the solution really is for disability rights activists and manufacturers to work together to come up with a solution that will work for all people that are affected by straw bans. And really the people that use straws the most. Those that rely on straws.

‍Jay Ruderman: So any examples of that? Anything that has popped up over the last few weeks where companies or municipalities have come to the disability community saying, “Let’s sit down and work on this?”

‍Robyn Powell: So I’m not aware necessarily of anything to that level. I think that what a lot of companies such as Starbucks have come out and said is, “Oh no, we’re still going to have straws available, you’re gonna just need to ask if you need one,” and that on itself is a great idea, I think, but I’m curious and slightly concerned about how it’s implemented. There is Starbucks all over across the country, and across the world, so I’m concerned about how all Starbucks locations are going to implement this and carry it out.

‍Robyn Powell: I could go into one Starbucks and I ask for a straw, and I get a very lovely response and a straw handed to me. I go to another Starbucks and I’m worried that I’m gonna get some questioning. “Do you really need a straw?” I don’t need to feel bad about myself, and I feel like there are people out there that are getting shamed at this point for needing straws, and I think that that’s what my concern is. So if we can come up with some sort of on-demand system where it really is truly on-demand, no questions asked, then I think that that would be an alternative for now.

‍Jay Ruderman: So we’ve had many cases with airlines where people have said to people with disabilities who are entering the process of getting on an airline, “Prove to me that you have a disability, what is your disability.” So is that your concern, like if you walk into a Starbucks or any other location that you may be encountered with someone, or people with disabilities may be encountered, and said, “Prove to me why you need a straw.”

‍Robyn Powell: So yeah, that’s my concern. I think that too often people with disabilities are forced to prove that they have a disability. I think that that is really problematic. Myself, I have a very physical and visible disability, so I’m not concerned that I would encounter any of that, although I have been shamed even by some people I know personally, so I could see it as something. “Robyn, why can’t you just drink with a reusable straw? Really, is this this big of a deal? Why are you so upset?” And these are people that I know personally, so, if people I know personally have some concerns or some negative feelings towards this, I worry that folks that have no connection to people with disabilities will also feel very strongly.

‍Jay Ruderman: So we’re trying to really take two different interest groups that are not at odds and focus on the rights of people with disabilities to be able to be included and part of society and to be able to go into an establishment and enjoy a drink and also the environmental who’s saying this is the worst of the worst in terms of affecting the environment and it needs to be done away with. So, are you aware of any links between the disability community and environmental groups that are trying to work this out, or are we just sorta like talking past each other?

‍Robyn Powell: I think that because of all the attention that’s gotten to this issue in the past month or two, there are starting to become some linkages between the groups. I think that historically they haven’t necessarily worked together pretty clearly on this issue, so I do see a lot of opportunities at this point. I know that personally, I have been reached out by a few groups since writing this article who have expressed an interest in really wanting to work with the disability rights community and come up with an alternative solution. I don’t think that any of this was done with any sort of malice. I just honestly think that this was an oversight, and I think that at this point, we really need to just try to correct it, again because this has many unintended consequences that just weren’t considered.

‍Jay Ruderman: And maybe to talk a little bit about the landmark civil rights legislation, the Americans with Disabilities Act, and the need for accommodations and public places being able to-the onus on them to provide accommodations. So you mentioned at the beginning as people may say, “Why don’t you carry some straws with you, and then you buy your drink and you can use your own straw?” Why is that not a great solution?

‍Robyn Powell: Right so the Americans with Disabilities Act was passed in 1990 so we’re almost approaching the 30th anniversary at this point. Part of the ADA is that public accommodations have to provide reasonable accommodations, so that’s things like restaurants and hotels and movie theaters and sporting events-anything that’s really open to the public does need to provide a reasonable accommodation. I would argue that straws are a reasonable accommodation.

‍Robyn Powell: The other part of the ADA that’s important to remember is when the ADA Amendments Act was passed in 2008. The focus was really to shift it away from people with disabilities having to prove that they have a disability. We should really believe it. If someone requests an accommodation, of if they say that there’s been any sort of discrimination, we shouldn’t focus our attention on, “Well does this person actually have a disability” but instead, “Is there an accommodation needed” or “Was there discrimination happening?” So again, I think this may violate both the spirit of the law and possibly the letter of the law.

‍Jay Ruderman: Okay, so this is sort of bubbling up and over the summer it’s become a hot topic because of companies like Starbucks and major municipalities and states taking action. Has the government gotten involved at all?

‍Robyn Powell: I don’t know that anyone has taken that much of a step back. I do know that some cities have gone and said, “You know, this is not going to affect people with disabilities. Of course, straws should still be available for people with disabilities.” And again, that just goes to my concern: are they really going to be available and how do we ensure that they are actually available?

‍Jay Ruderman: So let’s back up a little bit about the issue of segregation. People with disabilities are roughly 20% of our society and one of the largest minority groups in our country and around the world, but yet, this society tends to be very fractured. People come in at it from different angles, so is that an issue? Do you see a lack of unification on the disability community hindering this push to have equal access to drinks in public places?

‍Robyn Powell: Well you know, you mentioned that people with disabilities are one of the largest minorities and actually, last week the CDC came out with new numbers that said now it’s 1 in 4 people in the United States have a disability so we’re a growing group, it seems. Within the disability community, there of course are a variety of different experiences and needs, and so I do think that we in the disability community need to come together more on this issue. It doesn’t affect one type of disability. People with neurological disabilities are affected by straw bans, physical disabilities, people with developmental disabilities are affected. It really does cut across a lot of disability groups, and I think that we as a community really need to unite on this issue.

‍Robyn Powell: I think that it speaks to a larger issue, the fact that this wasn’t considered when plastic bans were put in place. People with disabilities, we exist in substantial numbers, and yet, I don’t think it was considered at all. I find that pretty ironic because people with disabilities, I assume, are the biggest consumers of plastic straws. I think that just goes to the fact that society continues to really overlook the disability community despite us existing in large numbers.

‍Jay Ruderman: So, how do you work to become not enemy number one to the environmental community? I mean, what’s the strategy on that?

‍Robyn Powell: Well, I personally think that what we need to do first of all, and I said that in the title of my article, I need plastic straws to drink but I also wanna save the environment and that completely true for myself and I assume most people with disabilities. I’m very much into protecting the environment. Personally, I don’t use plastic bags and I go and recycle everything I can; I’m very into it. I think that what we need to do is realize this is not people with disabilities being against the environment, and also it’s not environmental rights groups being against people with disabilities. Once we can get through that and realize it’s not this false dichotomy, I think then we can actually come up with a solution. It doesn’t have to be either/or, and I think that that is where we seem to be stuck, in some ways. In some ways it feels like disability rights is being pitted against environmental rights, and this is something that is happened historically: social justice is always being pitted against environmental justice, and can they be connected, and can you get both social justice and environmental justice? I think the answer is yes. I think we just need to be inclusive of both perspectives.

‍Jay Ruderman: Right. I do think that there’s a solution here, and with corporations and governments that can work these issues out, one of the issues that I’m concerned about is that the disability community is often seen as a community that is deserving of charity and not of rights. That’s a stigma that’s really hard to break through. Where a lot of people historically see people with disabilities as like, “Oh, well we have to take care of them because they’re less fortunate” instead of “They’re human beings who’re part of our society who need accommodations in order to be fully integrated into part of our society.” So, along with the fight to have your ability or people with disabilities ability to have access to straws, is there an overall issue here that you’re combating against?

‍Robyn Powell: No, you’re absolutely right. So, historically, we have seen people with disabilities as deserving of charity and that has really led to this really unfortunate view of people with disabilities, honestly. I think that people don’t see the ADA difference as a civil right, but more as a charitable thing, you know, “Oh, we need to make the buildings accessible so those poor people with disabilities can come into our business” and not, “Oh! If we make our business accessible, then we’ll get more business.” How we shift that conversation is what really needs to happen at this point. I think that the problem is disability is seen as a medical perspective instead of a social construct and I think that if we can see this as another marginalized community we can really start to shift the conversation and make it more about civil rights. That’s what it is. Disability rights are civil rights, at the end of the day. How we get there is really changing how we perceive disability. We can pass as many laws as we want but until we can change that conversation and those perceptions, this is gonna continue to happen.

‍Jay Ruderman: So how do you see, if you go look into your crystal ball, how is this going to develop? I mean, since you wrote this article, which is sort of the first one out there, have you been contacted by companies and municipalities and governments that said, “What can we do better?” Are you becoming an expert on this issue, or is it more like, “Okay, well I said what I had to say, which was important, and it was sort of a drop in the bucket?”

‍Robyn Powell: Yeah, no, so I did write one of the first articles and I’ve been thrilled to see that there’ve been dozens since then. I think that’s great that we’re getting out there and really increasing awareness of these issues. I have heard from some plastic straw companies who have said “We’re working on making alternatives, will you try this one out?” I know that advocates are working with their local municipalities on this issue. I know that folks out in California are doing a lot of work now on this issue because there are a number of straw bans being considered in cities across California, and that’s where the civil rights movement began, so I think that’s important that people with disabilities out there get really involved. I think that there is a growing awareness of this, and I think that that is what is necessary.

‍Robyn Powell: There’s still a need for more people to understand these issues, I mean, when I first wrote the article I was emailed by all kinds of people, and tweets saying, “You don’t get it” or “Why don’t you use reusable straws” and I said, “Did you read the article” or “We can’t worry about this, we have to worry about the environment.” Again, I think that it doesn’t have to be an either/or. I think that that is where the issue lies. This is not people with disabilities being against the environment, and it’s just, how can we do that by also making sure that we have our ability to live in the community? That involves needing to be able to drink.

‍Jay Ruderman: So what’s your closing sort of argument to someone who says, “Listen, I really care about the environment. Our world is being inundated by trash and plastic that doesn’t break down, that’s gonna be in landfills, and is gonna destroy our environment. You’re proposing a solution that sort of doesn’t help us reach that goal immediately.” How do you interact with people who just don’t implicitly get your message, at this point?

‍Robyn Powell: Right now I think that we have two ways we should be approaching this. First, we need to look at how we can implement appropriately on-demand of straws, so that if I go to a business, I ask for a straw, it’s given to me, no questions asked. That doesn’t mean that every person gets a straw, but if they ask for one, they get one. That will absolutely decrease the use of straws. Secondly, manufacturers, environmental right groups and disability rights activists really need to get together and try to come up with an alternative solution that will work for all people. I am certain that there is a solution out there. I don’t see why there wouldn’t be.

‍Robyn Powell: The other thing I just wanna point out is: straws aren’t great for the environment, and that is absolutely true, but research has shown that straw bans aren’t necessarily that effective. I recently read a study that showed that plastic bag bans are far more effective at protecting the environment, so why are we so focused on these straws when there are so many other ways we can be working on this issue? I don’t think that it has to necessarily be straws, straws, straws. While I agree that we need to be thinking about that, we should also be thinking about ways we can reduce our use of plastic, cause we use plastic everyday for far too many things. I think we can be reducing it.

‍Jay Ruderman: Well it may have to do with the fact there are major companies who are serving beverages all over the country and all over the world who may have seen this as a quick fix, as a way to do their part to make the environment more healthy. As you said earlier, it was probably an oversight, that they probably didn’t really consult with the disability community. One of the things that I’m concerned about is fractionalization of the disability community is that we’re not all sort of together saying the same thing at the same time with a powerful voice, and a company may look at it and say, “Okay well there’s a dozen different people saying the same things.” Has there been any movement to bring the disability community together on this issue and to release one statement that sort of encompasses many different disability organizations?

‍Robyn Powell: I think that that is something that is needed, but I’m not aware that there has been any sort of concerted effort toward that at this point. I think that the arguments are pretty consistent. I think we’re all kind of saying the same arguments but we’re not saying them from the same voice and I think that is an issue that needs to be addressed, and there needs to be some unification around the issue, I agree. It’s absolutely something that’s overdue at this point.

‍Jay Ruderman: Well I’m very impressed by the fact that the disability community has jumped on this very quickly. It made it an issue in the press and gotten the attention of companies, municipalities and gotten them to rethink, and I think if that messaging and advocacy is consistent, I think it will have real results. So, I commend you for what you’re doing because I think advocacy is the way to influence society and move it forward, so, Robyn, I appreciate your time and your scholarship and your advocacy and your life’s work in trying to make our society better for people with disabilities and more inclusive, and at the same time, being cognizant of issues of environmental rights, so, I really see you as a leader and I wanna really appreciate you for joining us today on All Inclusive. Thank you for your input; it was really helpful.

‍Robyn Powell: Thank you for having me.Voice Over2: [Music plays] 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.