Ari Ne'eman: American Disability Rights Activist /Professor at Department of Health Policy and Management, Harvard University Discusses Vast Career

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, this is Joyce Bender. Welcome to the show today. I hope you're all having a great day. Thank you for tuning in again. 22 years. I've been on the air 22 years. And the only reason I've been able to be on all that time is because of you. And every time I talk to someone and they say, oh, I just listened to the show today, or I listen to your shows all the time, I'm always so honored, excited. So thank you. Thank you all. And you know, if you ever have a suggestion about a show, Just shoot me an email, joybender@benderconsult.com. I would be delighted to hear from you because I always want to know what, what in the world of disability do you think is important and needs to be talked about? I mean, we're so lucky that, oh my goodness, that we have Jennifer Mathis doing our newsbreak. She is so fantastic. But any, anything else that you think is important, let me know. So thank you, all of you listeners through the Americas. Thank you so much. And to all my listeners around the world. Wow. Another week goes by where Singapore is in second place to the United States for most listeners. Wow. I mean, that is really Wonderful. So now you know what I always say. We have over 130 countries with listeners. What I always say is, if it's only one, if you're the only one in that country, one person, one can make a difference because you can share this with other people with disabilities in your country and everyone needs hope. But they need to know that they are valued. They are important. So thank you. I always give a shout out to one of the countries. So today is going to be Botswana. Thank you. Thank you for listening to the show, you know, and for being, being just wonderful. Make sure you get other people on board there in Botswana. Oh, and we got to have two. The second one, Brunei. Do you know I always went and spoke there this past year during the Biden administration? The embassy had called the State Department and they wanted me to go, but like it would be that I'd be there like 2 days and, you know, State Department, we couldn't do that. Takes so much time just to get there. I'd barely be speaking and turn around and come back, but someday in the future, I'm going to be there. And look how great you are. You listen to the show. Thank you so much. So now here comes my special shout out to Yoshiko Dart. Yoshiko, how are you? You know I love you. I mean, Ari, I have been doing this shout out to Yoshiko for years. On every show for years. And that is because we've got to keep the spirit of Yoshiko and the late, great Justin Dart alive. So I know you love Ari, so you're going to like this show a lot. I know you listen to all the shows, but just a special shout out to you.

And thank you. Hello.

Wait, wait, wait, wait. Go ahead, Ari.

Well, I just wanted to say hi to Yoshiko because I'm a big Yoshiko fan as well, and I totally agree with you about keeping her spirit and that of the late, great Justin Dart alive and carrying it forward from generation to generation.

Thank you. That will mean so much to Yoshiko. And I know Yoshiko, I know you, you're saying Oh, lead on, lead on, Ari. I know you, I know you. But we all feel like that also.

Actually, I've actually got my silver cup from Yoshiko right here. Just happened to be sitting next to me when you brought her name up. So that's a heck of a coincidence.

Wow. That is amazing.

I keep it on my desk.

How about that, Yoshiko? How about that? Well, we all treasure you. We do. And I would be remiss to not thank Highmark, who is the sponsor of this show. And you know, Highmark CEO David Holmberg, President Karen Hanlon, all of them. Third largest insurer in the United States now. And they hire people. They hire people. I remember when Ari, who I'll be introducing here, said to me once about a conference that was going on, yeah, it's great to go, but do these companies hire people? And yes, Highmark does hire people. So thank you and thank you for sponsoring the show. And I have to tell you, you are all in for a big treat with someone I've known for a long time. Ari Ne'eman, who is an assistant professor at Harvard in Health Policy and Management and is on the board of AAPD and just, you know, a great disability rights leader and brilliant. And Ari Ne'eman, do you remember how I met you?

Well, it feels like we've known each other forever, Joyce. Why don't you tell me?

You were Chris Griffin's intern.

That sounds right.

I remember that. Yeah. And you came to meet her for lunch and she said to me, I want you to meet my intern, Ari Ne'eman. Boy, he is so smart. That's when I met you.

Oh, Chris, Chris has been a great friend and mentor for many years.

Yeah, she is the best. No doubt about it. Well, Ari, it is truly a pleasure to have you. On here today. So you all know he is a national, well-known, well-respected disability rights leader in this country, and I'm sure people around the world know of Ari. So thank you for being with us, Ari. But I wanted you to start with your journey. You know, where did you grow up? And then become a disability rights leader, you know, and move on to what you're doing today?

Well, you know, I came to disability rights like a lot of people, you know, in part out of personal experience. You know, as a student in the special education system, it always frustrated me the ways in which there was an expectation that we disabled students not have access to the same things as non-disabled students. Yes, you know, I, you know, because of the fact that I'm autistic, instead of going to my neighborhood school for high school, which was down the street from my house, I went to a school that was about an hour north where there wasn't really any emphasis on academic education. There was a very strong emphasis on trying to make us look and act normal, but there wasn't really any kind of focus on things like science or reading or math. And, you know, after I fought for the chance to be included with my peers, it really seemed to me that there was a larger systemic problem, that if we could change the national conversation and international conversation on autism in such a way as to ensure that autistic people as well as other people with disabilities were included in the halls of power and were at the table when decisions were being made about us. You know, I wanted to see the next generation have an easier time of it. So I came to disability rights advocacy with that motivation, and we co— I helped co-found an organization called the Autistic Self Advocacy Network, which I served as its executive director for 10 years, from 2006 to 2016. ASAN continues to do a lot of important work under one of my successors, Colin Killick. And, you know, our focus, my focus as an advocate has always been on a few key objectives. First and foremost, I believe in inclusion. I believe fundamentally, and not everyone agrees with me about this, but I believe fundamentally that the best chance that disabled people have to have access to the American dream or the dream of whatever country you happen to reside in, because this is a show with an international audience, as you pointed out, Joyce Bender, um, is to be included in the broader community, in the same schools, in the same housing, in the same workplaces. And I think we run a tremendous risk when we create a pipeline to send disabled people to special separate programs to live, to work, to be educated. It creates a dynamic in which, A, people get substandard, you know, quality of education, substandard quality of employment benefits and things of that nature. But also where people are more at risk, where people are more at risk of isolation, where people are more at risk of abuse, because if there's one thing that the broader arc of disability history and civil rights history has taught us, it is that you face tremendous risk when you are out of sight of the mainstream of community life. I also believe very strongly, and this has been a consistent theme of my time as an advocate, and, you know, also something that I work on as an academic, too, that service provision, disability service provision, whether we're talking about the special education system, long-term services and supports, employment supports, whatever it is, it needs to be oriented towards empowering disabled people to succeed as we are, rather than to try and make something look and act like something that they are not. So one of the longstanding problems in the national conversation on autism, and it's not so dissimilar from problems that have faced other disability communities, is this heavy emphasis in many traditional autism interventions, particularly those of the behaviorist like Applied Behavioral Analysis, which is probably the most commonly used autism intervention right now, but one that I and a lot of other researchers and advocates have a lot of concerns regarding. One of the big problems with this model is this heavy emphasis on discouraging autistic traits, on trying to make autistic children and adults appear to be non-autistic. The neurodiversity movement, which really emerged to challenge these practices, really argues that it's not the job of a service provider to be pushing someone to make eye contact. It's not the job of a service provider to be telling someone not to hand flap or otherwise engage in stimming behavior. You know, the job of a service provider is to support someone to succeed as they are rather than to have to devote all of this time and energy to try and pass as non-autistic. You know, so I have really tried to orient my time as an advocate, my time in policy, and my time in research towards these values of both inclusion And, you know, really rejecting this demand that disabled people need to try and pass as normal. It's been a consistent theme throughout the last 20 years in which I've had the privilege of serving as a part of the disability rights movement.

Yes, boy, I so agree with you about trying to mold the person into the way that someone thinks they should act or behave. This is— reminds me in a way of how parents tell children with epilepsy, "Don't tell anyone." And I always say, "Don't tell anyone? You're telling them it's bad and there's something wrong with you." Well, the same thing exists here. If you go to students, young students, and you're saying, don't do that, you know, you need direct eye contact and don't do this and don't do that. Pretty soon you're taking away the person's identity and you're making them feel as if, oh, you mean those are bad things? When you do that, those are bad things? And no, they're not. And I know exactly what you're talking about. Ari, and I have to ask you, that school you went to, how long did you have to go there?

About 2 years.

How long?

2 years.

Wow. I'll tell you what. I can't believe it. You would think that's like 100 years ago. You know, I'm busing someone. I'm sending them an hour away.

It happens today. It happens today. And I think what's worth reinforcing here is, you know, people would argue— people argue that we send disabled children and disabled adults into segregated settings because of the severity of their impairment. And it is true that people with more severe impairment are at greater risk of being placed in segregated settings. So I do actually think it makes sense for us to place a lot of emphasis emphasis on supporting people with more severe impairment, you know, certainly more than we do today, because they are at greater risk of segregation. But it's not the case that ending up in a segregated setting, whether that's a special education school or an institution or a nursing home, is an inevitable result of disability, however severe. And, you know, I just point to the fact that there are— there's huge variation in the rates of segregated special education placement. If you could look state to state, there's huge variation in the rates of nursing home placement, the rates of institutional placement. You know, you can't tell me that people are more disabled in New Jersey, which has very high rates of educational segregation for students with disabilities, than they are in, say, Vermont. You know, which has lower rates. You can't tell me that people are more disabled in Ohio, you know, or Texas, which have high rates of institutional placement, than they are in, say, Oregon, which has very low rates of institutional placement. There's this consistent theme that things which are presented as the inevitable consequence of biology are in fact in part the result of the policy choices that we make to support people in a way that allows them to be included with support or to relegate people to segregated settings without justification.

Mm-hmm. Yeah. Oh, agree. I agree with you. So much that impacts, and we all need to think about that, the policy. So now here you are from that bizarre place you had to go to school to Harvard. Now you're a professor at Harvard. Boy, were they off with what they thought. And what are you doing now at Harvard, Ari?

Well, my research focuses on how public policy impacts people with disabilities, our families, and the people who support us. So a lot of my work of late has looked at, you know, Medicaid policy. You know, we have work underway right now looking at as states transition to managed care, increasingly states are contracting with private insurers to operate their Medicaid programs. How does that impact home and community-based services for people with disabilities? And there's a lot of reason for concern. You know, ultimately, there's real variability state by state in the level of quality control in these managed care contracts. And You know, when it's done well, you can kind of harness the profit motive of health plans to incentivize them to do a better job in serving people in the community. But that requires really carefully written contracts that really structure plan incentives in a way that, you know, avoids letting them game the system. And in many parts of the country, we're not seeing those kinds of very carefully written contracts. We're seeing, you know, a structure of incentives that really, I think, you know, does not resound to the benefit of people with disabilities and creates a risk of people losing access to services and supports that they very much need to survive and thrive. So that's been an area of my research. I've also been been doing a fair amount of work in disability measurement. So you're familiar, Joyce Bender, with the disability employment statistics that come out every month from the Current Population Survey and the Bureau of Labor Statistics. And those define disability using a 6-question sequence that asks about, you know, different functional impairments, people have? Do you have difficulty seeing, even, you know, with glasses? Do you have difficulty hearing? Do you have difficulty concentrating and remembering? And so one area that we've been looking at is who exactly is identified by those 6-question sequences? How does it correspond? Which diagnoses does this identify? And how does it correspond to different service systems? So a challenge that we sometimes see in the research community is there's this sort of an assumption that you can use these 6 questions, the 6-question sequence to study any particular group of people with disabilities. But actually, if you're focused on a question that's mainly relevant, say, to people with developmental disabilities, the 6-question sequence isn't actually very useful. We found that only about 1 in every 10 of the people identified by the cognitive disability question in the 6-question sequence has a developmental disability. So there's a whole host of other areas we're looking at, but, you know, my job is really to teach and research on disability policy, which is what I enjoy most in the world, so I'm living the dream.

You like teaching?

I love teaching. I've got a great group of students.

That's awesome. That is awesome. Well, they're lucky to, to have you, Ari.

I'm lucky to have them.

Yeah. Well, I'm worried about— I have to ask you this question first. When you were talking and you mentioned Medicaid, you know, when there were all these battles on Money Follows the Person and all that work Senator Harkin did. The nursing home had this huge, powerful lobbying group that fought to keep people in the nursing home versus coming out. What I'm thinking, how the heck are they going to survive, those nursing homes, without Medicaid?

Well, I'll tell you what I really worry about, because I, I share that concern. Um, I worry about the fact that over the next 10 years, thanks to the Medicaid cuts that Congress has passed recently in HR1, you know, and that the Trump administration is in the process of implementing, we're going to see about $1 trillion, close to $1 trillion. That's not just a number that I'm throwing out because it's a big number. That's actually the number from the Congressional Budget Office., in fewer— about $1 trillion fewer federal— excuse me, we're going to see Medicaid cuts equaling to approximately $1 trillion over the next 10 years. That's going to put a lot of pressure on state budgets, and states are going to be looking for places to make cuts. And as you said, the nursing home lobby is very politically influential. They're going to do everything they can to say, don't cut the nursing homes. Well, what's left? Home and community-based services, the services and supports that assist people with disabilities to remain in the community, to survive and thrive on our own terms. Those are the things that are going to be really under the gun, especially because the way Medicaid law is structured, home and community-based services are what's called optional services in the Medicaid program. Now, they're not optional for the people who need them. But when you look at what states are allowed to roll back, HCBS is going to be one of the more, you know, costly things that they're allowed to cut back on. So I think we're seeing, and we're seeing this already, we're seeing this conversation happening in state capitals across the country. I've heard from advocates, I've heard from state policymakers. We're going to be seeing seeing a lot of scrutiny placed on home and community-based services and a lot of efforts to salami tactic style start slicing away at them. It is deeply concerning. And I think the nursing home lobby, you know, does play a role in this conversation because they have proven disturbingly effective at repulsing not just cuts, but even basic regulatory oversight. You look at the fact that after COVID, you know, the Biden administration and a number of state governments tried to put in place common sense reforms regarding staffing ratios, you know, regarding a whole host of other areas of accountability to try and address basic safety concerns in American nursing homes. The industry fought it, you know, tooth and nail. And it reflects both a disturbing amount of political power and a, in my opinion, reckless disregard for the people that are under their control.

Yeah, I know. It's so scary. Like, I don't even know what the heck is going to happen. What will happen to people with disabilities? What will happen to people in poverty? What will happen to hospitals? What about that? You know, there are hospitals that aren't going to make it, you know, that are in rural areas. If you have all people that were on Medicaid without coverage just going into the ER saying, I need help, you know what I mean?

Absolutely. Absolutely. Well, there's a lot of advocacy that's going to be needed over the coming decade. Both at the state level where these decisions are going to be made and potentially in the future in Washington to try and influence the conversation to bring back some of these federal Medicaid dollars.

Yes. Yeah, I remember when someone said to me, oh, you know, during the time of Judy and Marca and Justin and all these, Pat Wright, all these advocates, Back then, now, there was a lot to fight against.

There's still a lot to fight against.

Well, guess what? It's back. And it's back hard.

It never went away. It never went away. We are fortunate that we have the foundation that Judy and Justin and so many others built for us. You know, but, you know, they understood it better than anyone. You know, you've got to fight to keep what you have, let alone in order to try and keep moving the ball forward.

Yeah. Yeah, one thing I had talked about years ago to Senator Kennedy and Tony Coelho and different people is that we— I wish we would have had some type of training with a not-for-profit that would train young people, you know, that want to be disability advocates. We need— I'm glad you're teaching because we need more and more young people becoming advocates for the disability community. You know, it's It's just, I mean, even what's happening with the legislation on websites being accessible was just delayed now for big companies a year, 2027. And all of these things, it's just, you know, got to do something about it. Well, with that, we're going to take a quick break and then we'll be back with our news report. Mathis on the mic, but right now we've been talking to Ari Ne'eman, Assistant Professor of Health Policy and Management at Harvard, and a really well-known, highly thought of, brilliant disability rights leader, Ari Ne'eman. Don't go away, we'll be right back with Ari.

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You're listening to Disability Matters. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

And welcome back, everyone. If you just joined, we're talking to Ari Ne'eman, assistant professor at Harvard and national, international disability rights leader with a lot of work in the area of autism, as he is autistic. But it is time first for our on-the-half-hour news break. With Mathis on the mic. Here she is, Jennifer Mathis, um, ready for our news break, our news report. Jennifer, how are you?

I'm good, thank you.

Good, good. So what do you have for us today?

So, um, some not so great news, which seems to be a common theme these days, um, but, um, Yesterday, the Justice Department published an interim final rule that delays the ADA Title II web accessibility rule. So that rule was issued in the last administration in April of 2024, 2 years ago. It took many, many years to get to the point where the Justice Department issued web accessibility standards. It was for website content and mobile apps, and it was specifically for public entities, state and local government services, so court systems, public schools, election websites, tax documents, all kinds of really critical core public services. And, um, what has happened, as many people know, over the years, as more and more of life has moved online, um, that people with disabilities, and particularly certain types of disabilities. I think this most impacts people who are blind or low vision, people who are deaf or hard of hearing, people who have manual dexterity issues and can't use a mouse. There are also some impacts on people with intellectual cognitive disabilities, but this has really— this shift to online services and activities has really left many people with disabilities behind as those services are not always accessible when they move online. And this has been something that the Justice Department is very aware of. The ADA, of course, requires accessibility, but when there have been no government standards explaining what exactly that means, of course, they still have to comply. Entities that are covered by the ADA still have to comply,, but what's tended to happen is without government standards, they've said, "Well, I don't know what to do," and they don't do much of anything. And so as the years have passed and more and more services have gone online, people with disabilities have been more and more impacted and more and more left behind. And so the Justice Department had begun a rulemaking process actually 16 years ago on 20th anniversary of the ADA in 2010, and they announced an advanced notice of proposed rulemaking saying to the public, we intend to do a rule setting standards for website accessibility. And then that rulemaking eventually was withdrawn, took many years back and forth between OMB and the Justice Department and Eventually that rule was pulled. And then in the last administration, they started again. I was involved with that because I was at the Justice Department Civil Rights Division at that time. And that was one of my highest priorities in going over there because it was such a huge disability community priority. And so we, issued a Web Accessibility Rule for state and local government services. And that came out, as I said, in April 2024. It was a very, very extensive rulemaking process, took into account all stakeholders' comments, the many, many comments from the disability community talking about how critically important this was, but also the many, many comments from regulated entities about, you know, whatever challenges they experienced and were concerned about. And because of the various concerns that were raised, I mean, DOJ did many things. They created a number of exceptions in the rule to ease burdens in many circumstances. They gave a long runway to regulated entities to come into compliance. Hence, public entities that were larger, jurisdictions that have a population of 50,000 or more, had 2 years, 2 full years to come into compliance with these rules. And smaller public entities in jurisdictions that had a population of less than 50,000 had 3 full years to come into compliance with the rules. And that's a lot in the world of technology that evolves quickly. But in the name of, you know, trying to account for all the concerns that were raised about all the things that public entities had to do, they had a lot of time. And then we see that the current Justice Department at the 11th hour days before the web rule was to become effective for those larger entities, wipes out the standards for a year and says, we are not going to hold anybody to compliance for another year until April 24th, 2027 for the larger entities and 2028 for the smaller entities. So, um, that is not great because that means that we have yet another year. And to do this at the last minute through not even a notice and comment process, but through this interim final rule process, which this administration has been using a lot to, um, issue rules without taking into account the public comments, um, is pretty disruptive to, you know, after entities have spent 2 years bringing themselves into compliance and people with disabilities have planned for being able to access things, to say at the last second, never mind, you know, we're giving people another year, is truly disruptive. But in addition to that, the Interim Final Rule says that they will consider during that extra year whether they will issue a new proposed rule that may change the substance of the rulemaking. Now, this rule, it took 14 years to get to that final rule and then another 2 years to get to the point where it was going to become effective. So then after all of that time to say, oh, Never mind, now maybe we're gonna change the standards again. Just cruel, mindless, cruel, and unnecessary. And it just sends the message that there is no certainty. And so whatever the rule is today, it might be different tomorrow. And the whole point of that rule was certainty. That was the whole point. And it helps people with disabilities. Frankly, it helps regulated entities. Most regulated entities wanted a set of standards because otherwise they have a very broad accessibility obligation, and without standards, they might be held to higher standards even. So this way they know what they have to do, and if they are meeting those standards, they will be fine. So those standards give clarity and certainty to everybody. And I certainly hope that— I mean, it's bad enough that they are talking about delaying those standards by a year, that they did delay those standards by a year, but that they are talking about changing those standards really is unacceptable. And so there is a comment period. It is 60 days that they have given the public to submit comments on this rule. So I think it is important for people to submit comments, not only talking about the impact of the delay of those standards, but also saying, please do not change the standards after all this time. And here's why. That, you know, it took many, many years to get to this point. We can't have a rule that changes every year and have no certainty. And we know what it feels like to have uncertainty about government standards, um, that even though the ADA applies, even though there's an accessibility obligation, that we have seen that people don't follow it, um, unless there are a set of clear standards.

Yeah, that's why 98% of websites are not accessible. Um, I guess we all have to write to our representative or go make comments. What do you want the listeners to do?

Yeah, I think for starters, certainly submitting comments. There is a 60-day comment period and people should submit comments. I think there will be templates done. I think people can look out for those from AAPD, the American Association of People with Disabilities, and from the Consortium for Constituents with Disabilities. CCD, probably from DREDF as well, dredf.org. And so, and actually I should say the blind advocacy organizations. So NFB, National Federation of the Blind, ACB, American Council for the Blind, AFB, American Foundation for the Blind.

Well, they've listened to you before on major issues. This is very, very, very sad. But you have a voice. You have to make comments. You have to look for those templates. And maybe we can check in with you again next week to see if there is any other news. But Jennifer, thank you. I'm sorry it had to be this news. But if you don't tell us about it, we can't do anything about it.

Right?

Exactly.

Yeah.

Exactly. All right. Well, hey, you have a good day and we'll talk to you again next week.

Yes. And I'm so glad you have my old friend Ari on today.

Good to see you, Jennifer.

Likewise.

This is, this is a reunion of old friends here.

Indeed.

All right.

Bye-bye. Bye-bye. So Ari, you're in policy. What do you think about this?

Well, it reflects, I think, you know, a deeply concerning trend in that, you know, so many aspects of civil rights enforcement have been gutted over the course of the last year. And it, I think, creates, as Jennifer pointed out, serious barriers for people with disabilities. But it also creates serious uncertainty for regulatory entities— regulated entities, rather. You know, I worked for a number of years as a disability advisor for the Department of Health and Human Services Office of Civil Rights. And one of the things that, you know, was very clear to me there is very frequently covered entities, the entities that are regulated under civil rights law, They benefit and actively want clear instructions about what they need to do to follow the law. And when you see regulations be pulled back, when you see delays of this nature that really create a dynamic where it's just unclear what the law is, that's not just bad for people with disabilities, it's bad for any entity that wants to, in good faith, comply with civil rights law. So I think this is a lose-lose, and we need to go back to a situation where we take enforcing our nation's disability civil rights laws and all of our civil rights laws seriously.

Yes. And everyone, you heard her. AAPD.com, Bazelon.org, DREDF.org. All of these organizations, you need to go look for those templates. You know, I always tell people, don't sit back and say, oh, this is terrible. Do something. You have a voice. You need to speak up and do something. And I know you will because you have been tremendous when called upon. Ari, before the show ends today, I wanted to take a moment to talk about two things. First, your book. Let's hear about your book so that we all know when we can buy your book.

So it'll be coming out in early 2027. I will come back on the show as soon as I have a date. And, you know, I would love to talk with your listeners about how they can preorder a copy in about 6 months or so. So, you know, to give you a little bit of a sneak preview, it is a history of American disability advocacy. Over the last 200 years. Wow. And in truth, disability history is the history of America. I mean, it's not just the history of America, you know, it's the history of many countries, but you can't talk about American history without talking about disability history as part of that. One of the things that I really enjoyed over the course of writing this book, which took me a decade, I've been working on it for about 9 and a half years now, so it'll be coming out 10 years after I started writing it, is seeing moments that are very familiar to students of American history, you know, whether it's the World Wars or the Civil War, whether it's the abolitionist movement, the civil rights movement, a whole host of other things through the eyes of the disability rights movement. And what I've realized is that disability advocacy, it's never been one thing. It's always evolved over time. In the 19th century, disability advocates were motivated primarily by, by religion and a wave of social reform that swept through the early republic. In the early 19th century, and for whom establishing disability services is very much a part of the same sensibility as fighting against slavery, or promoting temperance, or universal public education. You move forward in time to the late 19th and early 20th century, disability advocacy gets caught up in these ideas of scientific philanthropy in ways that actually become really concerning and cause the disability advocacy enterprise to be thoroughly intertwined with the eugenics movement, sends people with disabilities into institutions, eugenic sterilization. It's a very dark period in American history. You move forward in time, 1940s and '50s, disability advocates are imitating the American labor movement, and then it's really only in the '60s and '70s that the civil rights model, you know, comes onto the scene. And, you know, a decade later in the '80s, disability advocates from different groups—mental disability, physical disability, developmental disability, you know, blindness, deafness, etc.—have to come together to fight the threat of the Reagan administration's rollback of the the disability civil rights victories and the right to education. So it's a broader arc and it's one that we continue to be part of today. And I can't wait to share it with the reading public.

We can't wait either. So I will have you back on so we can preorder it and you will send me a signed copy.

You got it. Absolutely.

And we listen, I have all of you, you're getting to hear them now, you're going to get that pre-order opportunity. And I, there is no book like this. There is no book like this. This will be so exciting and wonderful. So you make sure, Ari, I get that book signed and we'll have you back on for all of our listeners. Uh, It'll be awesome. And I do have a last question for you, Ari. You are brilliant and you are kind. You're a good man. Someone influenced you, whether it's family or in history or whatever. So my final question is, who is your role model?

Wow. Well, thank you for the kind words. You know, I've benefited from a lot of role models. Judy Heumann, I would say, is the name that comes to mind when it comes to advocacy. I really believe that Judy Heumann invented the cross-disability rights movement. And I say that both as someone who has studied the history, but also someone who knew Judy very well. And the amazing thing about Judy is that she devoted her whole life to connecting the different threads of our movement. You know, I remember I was brought to meet her, you know, as a young 20-year-old new advocate, and first thing she wanted to know about was, you know, tell me about the autistic community, what are you trying to accomplish? And then, you know, throughout the coming years, she would always be connecting me with people because she wanted to see autistic people working with blind people, working with wheelchair users, working with people with mental illness, working with people with intellectual disabilities, you name it. She believed, she lived throughout her entire life this idea that we are stronger when we come together. So, you know, I don't know how we can be worthy of the great gifts that Judy And so many others like John Wodatch and Madeline Will and Justin Dart and so many others have left us in this cross-disability rights movement. But it is truly something historically new and of tremendous import. And I think every day about how I can fulfill my part of this ethical responsibility to move it forward. Pirkei Avot, which was a Jewish religious text, has this phrase: "It is not for you to complete the task, yet neither are you free to abstain from it." Judy, you know, who I spent a lot of time going to synagogue with Judy, Judy lived that principle. She really, every day of her life, she worked to build a better world. I try every day to live up to the task and the opportunity that she laid before us to contribute to that holy mission.

Yes, she did. And I'll tell you, when her book came out, Being Human, And I'm looking in the back, oh, look at all these great disability rights leaders. And right in the middle of it, I see Joyce Bender. Oh my God, I could not believe it. I was so overwhelmed that she had included me. And so I called her, we're good friends the way, you know, a lot of us were with Judy. But I called her and she said, Why wouldn't I? You're part of us and you help us get jobs. But Judy just had that impact on everyone that she— she is definitely the real deal. She, she is. And never forget her. And she— I agree with you, she set the standard. For disability rights. She really did. Well, Ari, thank you so much for being with us. I just want to mention to you, if you want to share this show with someone, you can easily do that. And if you want to go see it on YouTube, have a friend go see it on YouTube, they can. And if you want to, you can also download this show on and hear it on almost every social media platform like Spotify, Apple, Amazon, all of them. Make sure you share it. Keep this going. You may know someone with autistic that would really enjoy hearing this show. So remember, you can share it. Ari, thank you for sharing with us today. Thank you. Well, we end every show with a quote, and today that quote is, "There are enough people in this world who are going to write you off. You don't need to do it to yourself," said Susan Boyle. And in the words of Mary Brooker, when you get up tomorrow, remember, Choose joy. You won't be disappointed. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific Time and 2 PM Eastern Time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet Talk Radio. VoiceAmerica.com.