National Disability Rights Leader, Jonathan Young

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.

Hey everyone, welcome to the show, to those in the United States and around the world. Hey, a special shout out to my great friend Richard Roberts, who I first met with the the State Department when I was in South Korea, and in South Korea, Gangneung, Gangneung, I love you so much, to Cheryl Harris in Tunisia, such a wonderful, wonderful person, Veniamin in Kazakhstan, and now the people I've been meeting at, will be meeting at Nigeria and Austria, these are all people So you all know that work for the State Department and that are working in their country to help people with disabilities have quality of life. So, you know, I love them all. And also to all the countries, China, it keeps building up your listening audience. Thank you so much. Yoshiko, I know you're going to love the show today. Yoshiko. Jonathan is on. I know you're gonna love it. Uh, Yoshiko Dart, for years now, and I mean years, when I get on the radio, I give a special shout out to Yoshiko. And why I do that, in addition to the fact that I love her, is because I want everyone to remember her husband, Justin Dart, and what he did for this country, for what he did for all of us with disabilities, what he did for the world, actually. And that's why I do that. And to our sponsor, Highmark. Highmark sets the high mark for other companies to follow. I mean, this company is unbelievable. And by the way, the CEO, David Holmberg, will be winning the Champion CEO Award at the AAPD Gala. So what a thrill it is for me today, and I am not kidding, to have Jonathan Young, the Chief Operating Officer and co-founder of Acara Therapeutics, on the show. But that's not why— not, not just because he's an extremely bright and successful business person, but because he is one of the very first disability rights people I met So, keep in mind now that I've known him since 1999, and I'll be talking more about the great things he's done, but he is just the most wonderful person. Jonathan, welcome to the show.

Joyce, thank you so very much, and what a wonderful welcome. It really is wonderful to connect with you, and it's hard to believe it's been 22 years now. That's just phenomenal. To have had the chance to work with you and see the great work that you've continued to do, including with this radio show. Delighted to join you.

Well, I'm delighted to have you. And you know, since yes, we have a large listening audience in so many different countries now, 17, 18, 18 countries with listeners, I want them to know about you, because if you don't know Jonathan Young, you're missing out. And by the way, Remember, if you're thinking, oh my God, I'm listening to Jonathan Young, so-and-so would want to hear this, Spotify. Go to Spotify and subscribe to Disability Matters with Joyce Bender on voiceamerica.com. You'll be able to hear all of the shows, but this show is on demand, so don't forget that. But Jonathan, I want everyone to know about you because you have achieved so much, but I thought you could begin by just telling the Jonathan story, like how did you get involved in the world of disability? You know, where did you grow up? How did you end up getting a law degree? You know, could you tell everyone a little bit about you, including, of course, that you were at the White House and worked with President Clinton? I just want everyone to know you and what you've done.

Sure. Thanks, Joyce Bender. Before I do that, though, I do want to just take a moment to pause and pay tribute to Mary Brower. Just such a tragic loss this summer. And there have been so many extraordinary people in our community. When I think about Mary, one of those people that just every time I was around her just felt better for having done so. Just so extraordinarily positive and affirming. I don't know, it's kind of hard to find the right words. Just My hat's off to the incredible impact that she's had in our community. So my story, maybe I'll start by focusing on the disability piece. By way of growing up, I grew up in upstate New York outside of Rochester. And my sophomore year in high school, moved to Bethesda, Maryland. And my lead focus at that point in my life was wrestling. I had grand aspirations of being a college wrestler and being a competitive wrestler. And that was really my focus, much more so than schoolwork. And in December of 1986, my senior year in high school, I broke my neck in a wrestling match and was initially paralyzed from the neck down. I had an incomplete spinal cord injury, so I was able to have enough of a recovery where I was able to walk, but not a full recovery. So there is still residual paralysis, principally on the left side. I'd like to point out the distinction, though, between acquiring a disability and becoming a person with a disability. So, for me, I acquired my disability in that wrestling match. But honestly, Joyce, for many years, disability was the enemy. I wanted really nothing to do with disability. I wanted to defeat the injury and pass for being as "normal" as I could in terms of my gait to try to not make it appear that I had any kind of physical impairment. And it was really a process of embracing disability as part of myself, not something to be sort of embarrassed about or ashamed of, but really to be proud of as a core part of my identity. And the way I got there, I, you know, after high school went on to college, started out as kind of a physics and engineering major until I met Tony Coelho and maybe I'll come back to that later, who invited me to have an internship in the Majority Whip office in the United States House of Representatives. And then went back and kind of became a political science major and then a history major. And I went on to a PhD program in history. And it was about 10 years after my injury in 1996 where I basically hit a brick wall and just fell into a period of deep depression. And I think in a way I'd been running so hard and fast from my experience as a— having acquired a disability. And it just kind of— that course kind of ran out. And as I worked my way through my experience with depression, I think I realized that part of that was kind of denying a critical part of who I was. To make a long story short, I had an opportunity to write A History of the Americans with Disabilities Act on a contract with the National Council on Disability, working for, uh, Gerben de Jong, who was then the head of a research center at the National Rehab Hospital. And in the course of writing this history of the ADA, I did a bunch of oral histories of people in the disability community. And reading and writing about the passage of the Americans with Disabilities Act, it completely upended my view of disability. So, far from this stigmatizing notion that I had kind of internalized just growing up, I encountered all these just extraordinarily strong, powerful people who were advocating in the greatest halls of power in the United States to pass this extraordinary law, the ADA. And that was really the path to me sort of embracing disability as sort of part of who I was. To make a long story short again, you know, coming out of that experience, I met a guy named Justin Dart, who you alluded to, and he had extended to me the opportunity to work in the Clinton White House to work on disability matters. So I had taken a leave of absence from my PhD program and went into the last few years of the Clinton White House. And then went off to law school with an aspiration of getting into politics. Found my way to a law firm and then a boutique firm working on food and drug type work. Maybe I'll pause there. There's certainly lots of different facets. I think maybe a unifying thread has just been following sort of the next best opportunity in front of me, not really planning things out. So my life has kind of unfolded in organic ways.

Wow. I mean, that is an amazing story. You know, so when would that have been then that you were doing that oral history? When would that have been?

Yes, that was 1996 and 1997.

And is that when you met Tony?

So I met Tony actually in, uh, in 1987. So after my spinal cord injury in December of '86, I'd gone off to college of that following fall. And the National Rehabilitation Hospital had hosted this award program called the Victory of the Human Spirit Awards. And I'd been a patient at the National Rehab Hospital. And I get this call one day from the president of the hospital saying that they wanted to include me in this award. And here I am, this young 18-year-old, and my fellow recipients were Tony Coelho, Ray Charles, José Feliciano, Ann-Margaret, James Brady, you know, just an incredible set of people. And I met Tony during that awards program, and during kind of, I do not know, the intermission or on the way from the ceremony to a reception, he just came up to me and said, "Jonathan, you know, I am really impressed with your story. I would love for you to come and work for me." He said, "Write me a letter." And I'm thinking, geez, this is like, you know, a powerful politician. You know, he can't honestly mean what he's saying here. You know, he's just kind of, you know, being polite and saying nice things. But I figured, you know, what the heck, nothing ventured, nothing gained. So I write him a letter, you know, "Dear Tony, following up on our meeting, you know, I'd love to come and work for you." And lo and behold, he writes back and extends an opportunity to be an intern in the majority whip office, and he just let me be a fly on the wall in Congress. So he took me to all of the then-Speaker Jim Wright press conferences, to all of the Democratic caucus meetings, to all the majority whip meetings, and just exposed me to this world of politics that I'd never really encountered. And coming off of that experience, you know, left kind of my physics engineering major and switched to political science.

Wow. Hey, you know what, though? That is just like Tony, isn't it? That just so reminds me of Tony. Write me a letter. I mean, that just so reminds me of him doing that. But so you were an appointee in the White House. That's when I met you. I met— hey, I got to tell one funny story just so I don't forget.

Sure.

When you were in the White House, do you remember this day you told me, oh, we're having— I don't know if this was celebrating the 10th anniversary. No, I don't know what it was, but you said we're having a basketball game, the White House staff versus the wheelchair basketball team. Yeah, do you, you know, do you want to join us? I said, you know what, okay, so I'll watch. I'm standing in there, out comes the White House staffers like with ties on and, you know, all dressed. Then here comes these wheelchair basketball players with, you know, arms ripped, and I'm thinking, uh-oh. And sure enough, it was like what I thought would happen. But I, I have never forgot that. I remember that, uh, I remember that day. The world of White House staffers meet wheelchair basketball players. Quite a reckoning that was that day. But that is when I met you is when you were at the White House, and of course that's when I won the President's Award. But then NCD also, you were appointed to NCD head. So what was it like? What was it like for a young person when, by the way, people, there weren't like, oh, Maria Town, you know, all these people that we now know that had that role at the White House. There wasn't. I mean, this was new. You know, what was that like for you, representing the disability community and working with President Clinton?

Well, in short, it was kind of the time of my life. It was an extraordinary experience. I, I sort of chuckle when I look back at how I got into it. So I mentioned I did this year-long project taking a leave of absence from my PhD program writing about the history of the Americans with Disabilities Act. My prior dissertation focus had been 19th century American intellectual and cultural history. I'd been writing about the slavery debates. So very far afield from disability. And I'd been then spending some time after that initial ADA history writing about the history of the disability rights movement in the context of other civil rights movements. And then in the midst of all of this in 1998, I just get this call one day from Justin Dart, who I didn't really know at all well. I had interviewed him for the ADA history, but, you know, wouldn't have imagined that he could have, you know, identified me from a group of anybody. And just in this short conversation late in the day, it was like 5 o'clock, he calls me at the research center. And I won't try to imitate the cadence of his voice, but you can kind of imagine the way Justin laid this out. He said, well, you know, Jonathan, There's this job at the White House, and I need to know today the answer to two very important questions. Number one, uh, will you let me nominate you for this position? And number two, if you're offered the position, will you take it? And I need to know the answer to those questions this afternoon. And he didn't really know what the position was. It was— the only thing that I kind of remember was disability and White House. And kind of something PR in my mind because it was the Office of Public Liaison. And, you know, I'm thinking I'm in the middle of a PhD program, like, does this make sense? And, you know, I kind of hung up with Justin and picked up the phone and spoke with my father for a few minutes. And we basically just decided, well, geez, disability, White House, like, what else do you need to know? So I called back and I was like, well, yes to both. And, you know, sure enough, a few weeks went by and You know, it's extended the opportunity. And I remember being exceedingly nervous, right? You know, here I'm kind of this guy that hadn't been a, you know, a great student early on, had a bunch of struggles in a variety of ways. And, you know, here I was kind of in the middle of the White House. I'm grateful to Judy Heumann, who offered me one piece of advice early on, who had made the comment of like, just kind of listen and observe. And so I tried to do that a little bit just to figure out how the way things work. I think what was exciting about the Clinton White House was just the extraordinary group of people that President Clinton had assembled in the White House, just some of the brightest and most capable and passionate people I had met. And one of the fun things too was once you were inside the White House, it kind of didn't matter what your position was. It was kind of what you made. Of the opportunity for being there. And so I kind of found my way to just insert myself in everything related to disability. So I'd work with the, you know, Domestic Policy Council, you know, the National Economic Council, the press writers, you know, I'm sorry, the, you know, the speechwriters, just really across all aspects of the White House. And I think the way I approached the role is I, was responsible for every type of disability, whether it was a physical or sensory or psychiatric disability and every conceivable disability-related issue, whether it was employment or transportation or healthcare. And I wasn't an expert in really any of these things. I had mentioned kind of for a long time I just wanted nothing to do with disability. It was only kind of recently that I had just come to this sort of embracing of my identity. And so the way I approached the role was really kind of trying to be the matchmaker. And so I would try to find out where was President Clinton's agenda moving. Because by the time you heard about the president's agenda publicly, so much had gone beyond— behind the scenes to get to that point. So it was really hard to kind of detour the president into another direction. But if you could find the points of commonality between priorities within the disability community and where that was synergistic with what was going on in the White House, that's really where I tried to put my energy. And so then I tried to find who are the experts on the outside in the community or in the other parts of the government that I could put together in a room together with the right people inside the White House and others in the administration to try to sort of move agendas forward. So it's kind of that matchmaker role of Joyce Bender. You know, being in the midst of President Clinton, who was truly extraordinary in the way that he got disability. And yeah, it was just a phenomenal experience, pretty much around the clock for 2 and a half years, but a true highlight of my life.

Well, yeah, I mean, it was a time, like Judy Heumann was, you know, at Education, and there were like all these things happening. It was just an amazing time. It really was. And you certainly represented everyone well, Jonathan. You really did. You seemed as if you'd done this forever. And as you know, there's a photo of us in the office on that day. And, you know, I'm so honored and blessed to have known you and continue to know you, you know, all these years on. But I think we have a caller on the line. Scott, are you on hold?

I am. Hi, Joyce, can you hear me?

I hear you, Scott.

Well, thank you for having me, and hi, Jonathan. This is Scott Hammerson. I've been working for Joyce Bender for over 15 years, and first off, I want to thank you for starting Disability Mentoring Day back in 1999, and I've been coordinating the efforts for Disability Mentoring Day in Pittsburgh for the last 15 years, and we just had our big kickoff reception last night, which was incredible. And then we have over 500 high school students with disabilities attending tomorrow all over Western Pennsylvania to about 29 different businesses. And we're very excited about that. And that all happened because of your efforts back in the day.

Well, thank you so much, Scott. And, you know, it's So awesome to hear stories like that of the impact. You know, here we are 22 years later, and when I look back at my time in the White House, you know, I had the opportunity to work with so many extraordinary people inside the government and outside the government and able to make a lot of progress on a number of issues. One of the discouraging things after I left the White House was just the realization politically how fast things can be undone. Which can be really discouraging. And so when I think about of all the things that I was able to have the opportunity to work on, Disability Mentoring Day is probably the single one that had the greatest enduring impact because it is something that has now taken root from a very much ground, you know, grounds-up, grassroots level, not just in, you know, all across the United States, but in many countries around the world. To think that that first year where, I don't know, Joyce, between you and the White House, we had maybe, you know, 20 people to now, you know, thousands and thousands of people participating every year. It's truly extraordinary.

It is. It is extraordinary because this is just— this is just Pittsburgh we're talking about or southwestern Pennsylvania, but that one decision you made Jonathan, think of the impact you've had with all of those students. I mean, it is, it is, you've just impacted so many lives you didn't even know that you would and have and will continue to just from that one decision you made.

Yeah, no, it's humbling to think about it. And I know, you know, we had discussions back sort of, you know, what to call it, what the approach should be. And I remember, I think at the time, Groundhog Job Shadow Day had just gotten off the ground. And I mentioned kind of looking for these points of commonality. And one of the things that struck me is there were often mainstream initiatives that could so align well with issues of concern for people with disabilities, like access to technology or, you know, other types of things. But it was often hard to kind of get disability to be recognized as part of the conversation. And it struck me at the time that in the face of longstanding high unemployment for people with disabilities, that, you know, if we could get more encounters between potential employers and potential employees just to meet each other and break down some of the attitudinal barriers that it could lead to opportunities of various kinds. I kind of think back to my experience with Tony Coelho. Just a chance encounter at an awards ceremony led to a complete change in my career, just that one particular moment. And focusing on Disability Mentoring Day, I think there was a realization that much as we want to focus on integration, as a disability community priority, sometimes it's just hard to get the attention if you're kind of a minority in a mainstream program. And by sort of calling it out as Disability Mentoring Day, it kind of really put a focus on trying to put the priority on people with disabilities. And there was also this whole idea of, well, how can you really have mentoring be in a day? And the nugget of the idea was never for it to be limited to a day, but just a day is where a dialogue and relationships and opportunities can start. And so I know a number of programs around the country really, you know, build up to and build out of the actual, you know, kickoff in October to really make it a year-round effort to try to, you know, find more opportunities to get people with disabilities in front of employers where they can make a positive impact. And hopefully lead to, you know, to actual internship and other job opportunities.

Well, and it has. And Scott, how excited not just are the students but the companies to be part of this?

Yeah, organically in the last few years, the companies are even doing more than just that day. They have committees going on. They want to meet the students prior to Disability Mentor Day. They're driving to give them different gift bags, and then even they're following up after Disability Mentoring Day with the students, and a lot of the businesses request the same schools each year. So it's not just one day or for a few hours. A lot of the companies are continuing on those relationships, which is, like you said, it's more than just one day.

Yeah. That's so fantastic to hear.

It is. It is fantastic. Well, Scott, thanks so much for calling in.

Oh, you're quite welcome. Thank you, Jonathan, and have a great rest of your day.

Thank you, Scott, and likewise.

For those of you listening, um, I mean, I just want to make sure you understand that the third Wednesday of every October, which would be tomorrow— that's why, Jonathan, isn't it like amazing I have you on the day before— uh, Disability Mentoring Day is the third Wednesday of every October, and that is one of the reasons I was so excited to have Jonathan on this week to commemorate that. So on that day, high school students with disabilities, and in some places college students, go to a company, we'll say from like 9 in the morning to 1 o'clock, for a day of job shadowing. So they are matched up with people at the company, whether it's in IT, accounting, security, any area that that student has shown interest. They're all matched up, and the whole idea here is that with a manager, they're seeing this young person with a disability, and I think many times they're saying, "Wait a minute, like, why was I so weird about this? Why did I think there would be a problem hiring someone with a disability, look how awesome this student is. And then for the student, there's this, wow, I can do this. There's something like this, I can do this, this is an opportunity for me. And getting a little bit better understanding of the business world, which means it works both ways. And as I tell companies here, if they're an intern every year, Here's your future person that you can bring in for summer internships when they're in college and hopefully, you know, be able to hire them. And that has happened with us. And Jonathan called me just as he said, and he said, I still remember him saying, we probably won't get a month. But we can have a day. And if we have a day, that day has to be connected to employment. And so came Disability Mentoring Day. All Jonathan. You know, I just want everyone to know, all Jonathan Young. So, Jonathan, isn't it amazing what that one— I have this article I wrote about the CEO of Highmark Bill Lowry, who passed away several years ago. That's who I met with when I wanted to, you know, start the company. And I told him what I wanted to do and that I wanted him to bring on subcontract 6 people with disabilities and keep them on contract for 3 years. You know, you pay me the hourly rate and I will pay the salary and the benefits. And you know what? And it only took him one day to say yes. So when I write about him, I always write about, you'll get a chance in your life to make one decision. You know, when I'm in Kazakhstan speaking, I'm always thinking, Bill Lowry would never think that. You're that person, Jonathan. You made that one decision and you probably don't think about the thousands and thousands of lives that have been impacted from that one decision you made.

Well, again, you know, I'm— it's probably the thing I'm most proud of from my time in the White House of all the things I had an opportunity to work on. I will say, though, you know, it's very much a team effort. And, you know, I think I'm very glad that I had the foresight to recognize that to the extent that that program depended upon the White House for its future, that political administrations come and go, that the future of the program really depended upon it being taken up by communities around the country. And so by you coming to the table that first year, you know, with Pennsylvania, we were then able to build on that. I think there were like a dozen states the following year, and then within a couple of years, you know, almost all 50 states. But it was really, you know, leveraging the, you know, the bully pulpit, you know, the profile, so to speak, of the White House to draw attention to it. But then really empowering people in communities throughout the country and the world to run with the program and to tailor it to the needs of their individual communities. But yes, just truly awesome to hear the stories as I've had over the years of all the different people that have been impacted by it.

And continue to, just right here, 500 tomorrow. Thank you. But I mean, that is something, Jonathan, that will always be there, that your one decision made, you know, all the time. So I just— and I want everyone to know because, you know, people are getting hired, lives are being changed and sometimes saved because kids with disabilities are so bullied and it's work, opportunity that give us dignity and they give people with disabilities dignity. But now you have another job too, I see here, Jonathan. Chief Operating Officer and co-founder of Akero Therapeutics. What is Akero Therapeutics?

Sure. So, it's a biotechnology company developing an investigational drug for treatment of a form of liver disease called NASH, which stands for nonalcoholic steatohepatitis. Basically think of a trend line that can lead to cirrhosis of the liver, which can lead to liver failure, you know, liver cancer. And we're developing a drug that can help prevent that progression. We're evaluating the drug now in Phase 2b clinical trials. I had the opportunity to join a venture capital firm, which seems so far far afield from my days in the Clinton White House, but to be a venture partner to build a new company. And this had built off some prior work at a law firm where I was at, where I had a client's company that was another portfolio company of this venture fund, and they recruited me to join the venture group. And I think what was exciting to me, I mentioned this kind of matchmaker role in the White House, I think what was appealing to me about the opportunity was the idea of building a new company. I'm not a scientist. I don't have a big industry background or a background in drug development, but I love the idea of finding an asset, by which we mean a drug product that you could progress through clinical trials and hopefully get approved, and building the team that could make all of that happen. So we negotiated a deal with Amgen to in-license a product that they had developed for diabetes. And they had, for management, the management level just kind of decided to leave that therapeutic area. And we were able to negotiate a deal to take over that program and pivot to develop it for this condition of NASH. So we now have, you know, 30+ employees, you know, around the country. And it's been a super fun process.

And how, what is the website for Akiro Therapeutics?

AkiroTX.com. So, A-K-I-R-O-T-X.com.

Wow, that seems so exciting, Jonathan. I'll bet you never dreamt you would be doing this, this type of job, huh?

No, not at all. And, you know, it's funny in a way because I was, I was first approached by the managing partner of this venture group back in 2013 to leave my law firm and become a venture partner. And I thought it was a great opportunity because it's not the kind of opportunity that comes around every day. But the request was to relocate from, you know, D.C. to Brooklyn, to move my family. My daughters were, I think, 6, 8, and 10 at the time. And basically, I'd have a 1-year chance to succeed or fail at building a new company. And at the time, it just seemed a bigger lift than I was willing to take. So I actually said no. But then I followed that other portfolio company, Braeburn Pharmaceuticals, in-house as general counsel to get more experience inside a pharmaceutical company. And then when my first product was approved at that company, they recruited me again to become a venture partner, and this time I said yes. But what made a difference is I teamed up with this extraordinary scientist named Tim Rolf, who among other things was Chief Scientific Officer for Pfizer's cardiovascular and metabolic unit. And basically, the two of us teamed together. He was everything science, and I was everything around the science. And, uh, yeah, I was just probably the most exciting and stressful experience of my life. I would describe that there were times where I felt absolutely on top of the world and other times just crushed by it because, you know, basically at the time we raised, we did a $45 million Series A funding round to support this deal with Amgen. And at the time that we did that, we had basically run out of all of our seed money. I really couldn't make the next payroll. Wasn't sure what I was going to do next, but everything kind of came together. It was truly phenomenal.

Yes, people don't realize how much goes into this, but, you know, when you are the founder of a company or you're an entrepreneur such as myself, it is not like 9-to-5 job. I mean, you live it, and so I know what you mean. Now, Jonathan, do you— Where do you live now?

So, I'm still in Bethesda, Maryland, just outside of D.C., and, you know, our company is very much virtual now. We were virtual even before, you know, COVID hit. So, probably, you know, the company is headquartered in California, but the company is probably about 50/50, you know, in California and then, you know, scattered around the country. We've taken the position of really hiring the best people for any individual job. Recognizing that, you know, particularly in this day and age and proved by COVID, you know, you don't necessarily need to be sitting in an office, you know, 9 to 5 to do your best work. So we're focusing on getting the best people for the job and letting people sort of run with their responsibilities.

Well, I'll tell you, that is awesome because in this world today, right, there you can work from anywhere. So I'm glad that you didn't have to move, and I'm sure that Nellie and your children also were happy.

For sure. Yeah, yeah, you know, you start to form roots in life, and certainly moving can be exciting, but, you know, with the kids in particular, you don't really appreciate how many roots you've grown until you, you know, have left them behind. So I'm glad that we were able to stay local here.

Right. Hey, Jonathan, Last night, Senator Harkin spoke at our kickoff VIP, or virtual kickoff event for DMD, and he said how upset he is that today, you know, we have double the unemployment rate and only 23% of people with disabilities counted now in the workforce. As a matter of fact, He is absolutely appalled, as I'm sure you are, and shocked at the same time, being that the ADA was written 31 years ago. What are your thoughts on this? How can we be in this situation? I mean, how is that possible? I'm sure neither one of us would have believed this would happen.

I share the outrage. When you think back to the impetus behind the ADA, you know, a huge piece of it really was the focus on unemployment, that people were being left out of the workplace. And part of the way that the ADA was able to garner the Republican support that it did, candidly, was this idea that you were going to reduce discrimination and enable more people to be sort of contributing members of society and not sort of dependent upon programs. So it was like a lot of the Democrats came to it from a traditional civil rights kind of nondiscrimination perspective. And a lot of Republicans got comfortable thinking that this is a way to— individually and minimize demands on resources. I would argue that those are not usually exclusive, but that's a longer topic. But, you know, I think I would join everybody in thinking that with the ADA, we would move beyond that. And, you know, the numbers bounce around year to year, but, you know, it seems largely like we're in this sort of state of stuck. So why is that? I think on issues of employment, it's hard to legislate. This is part of why I think programs like Disability Mentoring Day can make such an impact. If a handful of people apply for a job and one person gets the job who didn't have a person with a disability, and a person with a disability was passed over, you know, it's tough to prove that there was discriminatory intent. Obviously, there are cases that are able to succeed, but it's tough. And so I think at the core, it's really a lot of it is attitudinal. And this is why I think your points earlier about disability mentoring, they are so spot on. I think a lot of employers are just afraid. You know, they're not sure what's going to happen. They're not sure what they're going to have to Do I have accommodations? You know, they're just, they're not sure. I mean, you know, I remember talking to people and they're just not even sure how to interact or talk to people with disabilities. And I think on the side of people with disabilities, you mentioned earlier sort of how transformative it can be for participants in Disability Mentoring Day. I remember writing about the ADA history and talking to people like Judy Heumann and Fred Fay that their extraordinary leadership roles really were inspired in large measure by their parents who held high expectations for them and didn't think that they should have anything less than their non-disabled peers. And so I think attitudinally, as long as employers are afraid and fearful, and to the extent that people with disabilities, you know, as I did, can kind of internalize sort of stigma around disability. You know, no law is going to fully right that. And so I think we need to have more encounters that can try to break down some of these attitudinal barriers. The reality though, I don't think there's any quick fix, Joyce. I mean, you know this probably better than anybody, but your sustained efforts in forging relationships with employers and demonstrating, as a lot of data shows, that people with disabilities are really awesome, capable, you know, loyal, dedicated employees. You kind of build on that from the ground up in communities, you know, one by one. But it— there's no kind of magical fix. The ADA kind of helps there to sort of support things, but the work is really day-to-day, community by community.

It's just, you know, Look at you. You know, look how successful that you, you are. I look at the role that you're in. And yet, if I would go to someone tomorrow and say, oh yeah, hey, there's this young man. Oh, he was in a wrestling accident. Yes, he has paraplegia, you know, or whatever you want to call it, your situation. What do you think? Oh, we'll have to see. Oh, right, or that person— poor that person. And now look at Jonathan. You know, this is, uh, I'm honestly— I, I get so upset when I think about it because, you know, when you said about you can't legislate, uh, morality or doing the right thing and attitudes. You can't. But then that means that people look at people with disabilities as inferior, with stigma, and I just don't know how long it's going— that it will take for that to change, you know, because when I go speak at a company and they say, "Oh, Joyce, we're so glad that you're here today, you know, we want to start hiring people with disabilities," I tell them, "Oh, but you already have." Yeah, they're working here right now. They have post-traumatic stress disorder, epilepsy like me, uh, MS, bipolar disorder, whatever. It's just they aren't telling you. So that alone tells us that people know. Well, look how you felt at the beginning. Sadly, that— yeah, it's hard to believe it could be like that still today. But yeah, Senator Harkin, just like you So upset.

Well, I think another sort of factor is there's an expression of gateway costs. So for many people with disabilities, it's really not an equal playing ground because the cost, say, of transportation or the importance of having access to healthcare or the needs for additional kind of, you know, assistive technology can become barriers. And I think sadly we've created, you know, a lot of disincentives in our system where hopefully will continue to build on Obamacare and move beyond some of these things. But when your access to healthcare, say, is gatewayed through income support, and income support is conditioned on pledging that you're unable to work, you know, a lot of people with disabilities, having access to healthcare isn't an option. And so you can end up being driven toward sort of preventing yourself from working to have access to healthcare. But those kinds of structural things I think have been another huge part on top of all the attitudinal kind of discriminatory pieces. Yeah, you know, I wish I could put like a great silver lining on it. Surely there are many great success stories, but when you look at the numbers, you know, it is hard not to feel that we have just, you know, not not reached the kind of heights that we had anticipated back in the '90s with the passage of the ADA. It's not to say there aren't extraordinary— like, one of the things that always makes me smile is when I see marketing campaigns that just include people with disabilities. And it might just be a fleeting image, or I remember there was one commercial, I think it was like a Kohler faucet commercial, where a blind person kind of comes into the bathroom and walks back to a colleague or a date at a dinner table and is like, "Hey, have you seen the bathroom?" But it's just like ways that we're marketing positive views of disability. Those things I think make a difference over time. And the way the ADA set up a standard of making things accessible as the world was created new or revised that has an impact over time. So, you know, I will always hold on to hope. But I think it is just going to take a lot more people like you doing the kind of work that you are doing, you know, on the ground, day in and day out, forming, you know, constructive relationships, and just making more points of contact that people can build on.

Well, we got to keep working on it together. That is so true. But I will tell you what, if you are listening to this show right now, and And you can hire someone with a disability. I don't care if it's one person, do it. Because that is where the rubber meets the road. When you have freedom to buy a car, rent an apartment, live the American dream, you can't do that without work. We've got to work together on this. We've got to work together on this. Something you mentioned, Judy Heumann, something she told me I wanted to ask you about. Is there, if we could somehow put a bigger emphasis on STEM learning for students with disabilities, now Judy was talking about like we're talking first grade or kindergarten, do you think that would, what kind of a difference do you think that would make?

Well, look, I think that's where a lot of the jobs of the future are going to be. And so if you're trying to be, you know, tactical and make an impact on employment, focusing on developing the skills, you know, where the jobs are, and that's absolutely right. And when you think a lot about a lot of our STEM-type, you know, careers, they are, you know, often the ones that, you know, can thrive, you know, virtually. You know, I've been working from home pretty much for the last 7 years. And, you know, there are certain things I miss about being in the office day to day. I certainly welcome opportunities to travel and be with my colleagues. I love the fact that I can do my job, you know, remotely through a computer. And so I think absolutely technology jobs are where we have huge needs that we can't really fill with— you know, we're struggling to fill. So yes, I absolutely think that having people with disabilities, you know, pursue STEM jobs and for the educational systems to keep high expectations that people with disabilities can and should succeed there.

Well, I think that's really probably what Judy was also getting to, is that the bar is lowered. Like last night, Maria Townes said— and I'll use this forever— she said, "The tyranny of low expectations." That is the world of kids with disabilities in school and, and, and, you know, later in their life. So it would be great. It is great. You know, I would encourage anyone to do, to go into these areas and to make sure you're included equally in education when you're at school. But sadly, now we have people with master's degrees in those areas that still are having a hard time gaining employment. People with significant disabilities, you know, the more significant the disability, the harder it is to gain employment. So I just think we have to keep, you know, making it clear to everyone that this is a national tragedy right now. You know, this has been going on so long. We've We've got to be incensed the way you and Senator Harkin and Tony and Judy and everyone is, you know, Ted Kennedy, Maria. I don't care who I talk to, it's always, how the heck can we still be in this position that we are in today from 31 years ago? And the only way that's going to change is if people start Opening the door to all people. Well, Jonathan, you have— you, you are just so impressive, all the things that have— that you've accomplished in your life. So that tells me someone had to have an impact on you in your life. So my question is going to be, who is your role model?

Well, look, I I feel very blessed to have had many people that have had transformative impacts on my life, including Tony Coelho, who I mentioned earlier. If I had to single out a role model, it really comes back to Justin Dart. And I think part of what I loved about Justin Dart is, you know, he never felt like he had to be the smartest person in the room or the expert in the room. But what he did was he brought people together and he saw the value in every individual person around him and worked to find common ground, and in a way that we've just not filled since he departed, really pulled together a very diverse community because he saw the value and importance of every individual role within that community. And so when I think about just the extraordinary goodness of his presence, and like you said, Yoshiko at every, every turn, it really was a team, the two of them. Just the extraordinary impact that they had in empowering everyone around them is just an extraordinary role model.

Yeah, he is. I wish I had known him more. I mean, I knew him and I met them, but it wasn't the way you knew him. And of course, he didn't live long after that. But we will never, ever forget Justin Dart. He made a good choice, Jonathan, when he called you that day and asked you to make those decisions that you made. So before we close the show— yeah, before we close the show today, Jonathan, what do you believe is your greatest accomplishment? What do you look on and say, wow, I'm so proud of that?

You know, almost more than kind of any individual accomplishment as such in the way you're probably meaning. I've alluded to this a few different times, but, you know, my spinal cord injury, my experience of depression— I didn't go into too much detail, but some very dark moments in the midst of the effort to found AKIRO. I've kind of developed this notion of kind of being at points of zero where you feel, rightly or wrongly, like all is kind of lost. And I have been able to sort of, you know, build up from a number of second chances in life. And so I think what I am really most proud of is being at moments of kind of metaphorical zero and finding a way to learn from failures, to learn from mistakes, to build relationships, to, you know, take advantage of opportunities, and just to kind of keep on plowing forward. So I really think that is what I am most proud of. Most proud of.

Well, you certainly have done that. There's no question about that, and you continue to. I just love you, Jonathan Young. I think you're just the most awesome person. So, what message would you like to leave with our listeners as we close the show?

Well, Joyce, you're very kind. It's been wonderful to be with you today. It's hard to believe that time has gone by so fast already. You know, Messages, be true to yourself and play the long game, are kind of two messages that I kind of hold dear. By being true to yourself, obviously there's a lot of pressures from loved ones and employers and friends and teachers and whomever, but I think it's really critical for all of us to kind of hold true to what our core is. Not necessarily to be like everybody else, but to kind of find your own way. You know, I like to talk about playing the long game, that sometimes the hurdles seem very high, but by staying focused on sort of the long-term trends and staying focused on where you want to go, to kind of weather some of the near-term bumps and bruises, to focus on that sort of long-term, long-term goals.

Well, those are— that is great messages. Great messages. And remember, You can tell everyone to go hear this show. Go to voiceamerica.com or Spotify, Disability Matters with Joyce Bender, and you can hear this show again with Jonathan Young. Thank you, Jonathan. I end every show with a quote, so this one is for you, Jonathan Young, and it is, "When you get a chance to take the podium, speak up," said Tony Coelho. And you listened. I must say that you listened. So I look forward to talking to all of you again next week. And until then, choose joy.

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.