Jonathan Young: Disability Advocate and Pharmaceutical Industry Leader Shares Commitment to Empower Patients and People with Disabilities to Achieve Life Goals

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

Hi everyone, welcome to the show. You know, this is National Disability Employment Month. I don't call it National Disability Employment Awareness Month because we've had more than enough awareness. We need employment. That's what we need. And it also is Disability Mentoring Day Month, which is this Wednesday coming up. And amazing, our guest today worked with me to start disability mentoring. Actually, he had the idea. He called me and said, we'll never get a month. What about a day? And this is while he was in President Clinton's administration at the White House. And there you go. Because of Jonathan Young, look what's happened. Look what's happened all around the world. We have disability Mentoring Day. And I can't imagine even how that feels, Jonathan, knowing that one idea, one idea, look what that has done. Look at the lives that that has changed, which we can talk about later in the show. But I also want to thank my listeners around the world, 143 countries. So yes, Singapore, you still are In second place, right under the United States, for most listeners. Amazing. And you keep getting bigger, by the way. You're just so awesome. And we have all the countries I just told you about, but I always like to single out— here we go. We will single out Angola. Angola. Angola. You know how many listeners they have? One. One listener. But as you can see by the story I just told you, one person can make a difference. One. So just tell everyone about this show and how important quality of life is for people living with disabilities, no matter where they live. You all know I live with epilepsy. And guess what? A seizure is a seizure, no matter where you are. So, you know, we're all connected. Just remember that. And also, hi, Mark, for being the sponsor, the lead sponsor for many years of this show. And do you know we've been on 22 years with over 1,000 episodes? And do you know why? Because of all of you. All of you, without you, there wouldn't be a show. So thank you so much for everything that you're doing to help us spread the word. And now, last but not least, shout out to Yoshiko Dart. Yoshiko, the show today is about someone that I know was close to you. That we lost 2 days ago, Becky Ogle. And I know how she loved you and Justin. So wait till you hear this show with someone else you really, really love, Jonathan Young. We all do. We all love Jonathan Young. And he was one of the closest people to Becky Ogle. And we changed the whole schedule of what we were going to talk about, which was only Disability Mentoring Day. So to all of our listeners, if you're listening to the show, I know many people with disabilities are listening to the show that are advocates. Please tell everyone they can Listen on demand, go to Spotify, Amazon, Apple, any of those shows, or as you see right now, we're on YouTube. But I want to get right into this. And Jonathan, before we start, since we have listeners everywhere, maybe you could start first by telling them what you do now.

Sure. Well, first of all, thank you, Joyce. It's wonderful to join you. Congratulations on crossing 1,000 shows. That's an extraordinary achievement. I think this is the first one that I've done with you on video. So in addition to the sheer number, broadening out into a new medium, I think all of that speaks to the extraordinary success that you've had with this program. So thank you for inviting me to be part of the show. We'll talk about Becky. Just really pleased to have an opportunity to help pay tribute to the extraordinary life she lived, the contributions she made, and just the person she was. As for me, I am currently CEO of Acura Therapeutics, a Novo company. This is a biotechnology company that I co-founded just about 10 years ago. In 2018, we in-licensed a compound from Amgen and went public, are now in the midst of a global 4,000-person global Phase 3 program. And last December, we were acquired by Novo Nordisk, now Novo. And I am remaining as CEO of the wholly owned subsidiary of Akiro as we continue to progress our trials and move toward a marketing application to hopefully bring this drug to patients around the world.

Wow. What does that drug do, Jonathan?

It's for treatment of liver disease. So it's a condition called MASH. It used to be called NASH. And one of the things that we had shown in a recent phase 2 study, or not too recent, a couple of years back, was we had reversed— there's staging of fibrosis. So the most advanced stage of liver disease is cirrhosis. And we were able to show in the condition of NASH reversing patients from stage 4 cirrhosis back to stage 3 fibrosis. And it's something that we're also now going to develop with Novo's support for treatment of alcohol-related liver disease. So potentially hugely impactful for a disease that's affecting people all around the world and rapidly becoming the leading cause of liver transplant.

And what is the name again of your company?

Akerotherapeutics, A-K-E-R-O Therapeutics.

And I'm sure if anyone's interested, they can just go to the website.

Absolutely. AkiraTX.com if you're curious.

Okay. Well, Jonathan, this show today is in honor of Becky. And so many of your friends are so excited that we're doing this and my friends, of course. But I think we could start Just because there are so many people that don't know her, if you could just give a little background on like, what did she do? You know, what was her life's work?

Well, maybe I'll introduce it by sharing with everybody how I first met Becky, which was as part of my research for writing a history of the Americans with Disabilities Act. And happy to talk a little bit more about this, but I was doing oral histories with people in the disability community. This is back in '96, '97. And one of the things that I'd written about was this extraordinary coalition across the disability community, different types of organizations representing all types of disabilities. And one of the major aspects of the enactment of the ADA was a grassroots effort to mobilize activity from the community all around the country. And Becky was sort of the leading, one of the leading grassroots organizers. Justin Dart, you know, a dear friend that we know and love, described Becky as the General Patton of the community during passage of the ADA. So to me, first and foremost, she was a person that just was on the road, on the trail, trying to drum up enthusiasm for the ADA. And that's how I first encountered her. But grassroots advocacy. And as a broader background, she is a person with spina bifida. So she was sort of leading grassroots advocacy overall, but also representing the spina bifida organization. And then from the ADA forward, kind of the ADA was never the arrival point, the endpoint, the culminating point. The ADA was just a foundation to build on. And so then she built on her work getting the ADA passed to focusing on how we could actually make it mean something in the lives of people. And so she was very active politically, very active in grassroots organizing for the DNC, very active in the Clinton administration, particularly around promoting employment issues. But I think the thing that I would say more than anything else about Becky, just the, like, extraordinary spirit unlike anybody I've ever encountered. You know, she's sort of a small person in terms of like physical presence, but her emotional, spiritual presence was just loud and boisterous and in your face. We had a group of us that were with her over the weekend talking about this idea, like a lot of people come into a room and take their place. Becky came into the room and like it was her room. Toe to toe with presidents, speaking truth to power, not accepting anything in terms of being satisfied for what was given. She was there to advocate day in, day out to make this world a better place for people with disabilities.

Yeah. Yeah. You described her well. Did she ever work for anyone? I mean, did she have employment through all of this?

Yeah. So when she was the executive director of the Presidential Task Force on Employment of People with Disabilities. So we kind of overlapped. I had worked in the Clinton White House from '98 to the end of 2001, and just before I had joined the White House, this task force had been set up, and she was executive director. And then from the executive director role, one of the recommendations was to form a permanent embodiment focused on employment in the Department of Labor, which was the Office of Disability Employment Policy. And she was named the first Assistant Secretary at the end of the Clinton administration. And then, you know, thereafter, you know, she did a variety of consulting work. But I think her advocacy work was less about being employed in a sort of single steady job and more about finding places that she could advocate for people with disabilities, particularly grassroots political activism.

Yeah. That's right. That's how I would describe Becky also. I know there's a story about Becky going protesting and them taking her out of her wheelchair. I don't know if it was on a stretcher or what it was. But what is that story? Do you know what I'm talking about? She— go ahead.

I'm actually not familiar with that story. But Do you know what point in time?

I think this was maybe even pre the ADA.

Okay.

So anyway, I heard someone talking about that she went in and she was protesting wherever it was, and that they took her out, the police. And as soon as she got out, she went back again. You know, but that's sort of how Becky was. Yep.

Absolutely.

You know what I mean?

Oh yeah. No. And I do want to just pause and take one moment. Here on this show, we're very much focusing on the sort of contributions that she made to our community, you know, passage of the ADA, focus on employment. I want to give a shout out for the moment to Claire Orgel, Becky's sister, I think 3 years younger than Becky. And I don't want to lose sight of just sort of the human side. It was interesting, as I was talking to Claire over the last few days, she was describing that she had no awareness of what Becky was doing nationally around disability issues. Becky just didn't talk about it. She was joking that when she'd call Becky and be like, oh, what are you up to? She's like, oh, I'm just playing Wordle and so forth. As consequential of a person as Becky was in the community. For Claire, her sister, and my heart goes out to Claire for losing her dear sister. The two of them are so close, and in the end, the one person that Becky really wanted to focus on and say thank you to was all the love that Claire showed Becky throughout her life. So Claire, We've lost a community leader. You've lost your sister. And I just wanted to say thank you for sharing her with us. And I'm so terribly sorry for your loss.

Well, me too. Doesn't that say a lot about Becky? I mean, she was a national disability rights leader and advocate. Well, for you, what are some of your Best memories of Becky.

You know, one of them that stands out: we were doing—I think this was the the tenth anniversary of the ADA—and we were doing this event at the FDR Memorial, and there was this whole complicated effort to like get enough seats for everybody that wanted to be there, and there was you know conferences going on at the time, and then so we kind of like worked. to get extra chairs, and then some of the people weren't able to come. Anyway, I was kind of terrified about sort of letting President Clinton down. And I just remember Becky just kind of, you know, wheeling up and her very kind of Becky kind of way, just providing the assurance everything was going to be okay, you know, jumping on the phone with me explaining, you know, how we were going to manage it. But the kind of person that just always, you know, had your back. And it was really like never about Becky. I think kind of like that story that I just said with Claire, she was always so quick to turn the attention back to your own life. Yeah, it's less any individual story than just the embodiment of sort of who she was. Absolutely fearless at a point when I was nervous about this, how this event was going to go. She knew everything was going to be fine, completely fearless, and sort of helped help make me feel more grounded than I was at the time.

Yeah, I I think of so many things. One thing I think of was when I was on the President's Committee on Employment of People with Disabilities. Tony Cuello is the chair. One time Becky came in as a speaker, and they had told her, okay, be calm. It was at ODEP. It was at the, well, President's Committee at that time. But members of that staff were like, you know, people that you know. And they had told her sort of like, Keep it tame. You know what I mean? But there's no keeping her tame, and she says, "Well, the one thing I want to say is, when are we going to be treated like humans to OFCCP?" She's telling them this, you know, and she's telling them, "You don't count us. We we don't matter." And I'm there dying, you know. But Tony, he loves Becky. Always loved Becky, Tony Coelho. So he didn't get upset.

No, and that's exactly it. Like, her fearlessness to speak her mind, you know, it was sort of amazingly unfiltered. But, you know, she brought this kind of Southern Tennessee kind of, you know, accent. But she just spoke her mind. And, you know, I would kind of be the person that wanted to be diplomatic and, you know, maybe not say something too severely. But yeah, she just spoke it confrontationally, directly, never sort of, you know, aggressively, like in an adversarial kind of way. But she made it clear what was wanted and expected and needed. And it wasn't about handouts or, you know, pity. It was entitlement to be treated like a human, like everybody else. There was one little thing I wrote about this in a LinkedIn post. But so Becky was very near and dear to my whole family, my wife, Nellie Wilde, our daughters Bella, Katie, and Julia. Becky was regularly with us for Thanksgiving and other holidays and attending the kids' events. So it's, you know, very near and dear to us. One of the events she attended, I was doing this fundraiser. I was playing trumpet with the Washburn Conservatory of Music, and I was an adult student performer, and I hadn't ever done like a public jazz solo. So I was, you know, kind of nervous about this anyway. So I kind of let in— started into my solo. It's to Duke Ellington's Don't Get Around Much Anymore, and I kind of ran this couple octave scale, and Becky just yelled out like, you know, go Jonathan! And this is like in a law firm, kind of this like quiet place, you know, just speaking loud. When I got done, she's like, yay, Jonathan, you know, way to go, like great and super.

Oh, I can hear that. I can hear you on that.

Becky was also the kind of person that just kind of like put you in your place and like never kind of took things too seriously. And so then at one point I was walking over to talk to the sax player and she just yelled out, Jonathan's in the way. And so I just love that about her. So it's like encouraging, supportive, but like puts you kind of in your place in a way too. So, um, yeah, it's just that spirit of being unafraid to speak out, to speak loudly, and to speak truth to power.

Yeah. When you said, like, I can't believe— I wonder if her sister knows this, but I took notes on a few things that impacted me about Becky. She was the inspiration for Mattel's 1993 Share a Smile Becky, the very first Barbie to use a hot pink wheelchair. And it was so popular that it sold out in 2 weeks. I don't know. Is it Clara?

Claire.

Claire. I don't know if you knew that, Claire, but see what I mean? That's major. Do you remember that, Jonathan?

No, I do. But there was another funny part of that story. So, you know, you have the regular sort of size Barbie, and they made a wheelchair that fit the Barbie doll. But then it turned out that— I forget what the name of the house was, but whatever, like, the houses were for the Barbie dolls, the wheelchair wouldn't fit through the door. And so it was kind of like this nice little embodiment of the reality of the world and inaccessibility, that an effort to sort of acknowledge a wheelchair user as a Barbie actually didn't fit with the rest of the Barbie line.

That says it all, doesn't it?

Yeah, but it was—

well, she still did that. She still did that much. But yeah.

Yeah, but it also shows—

I'm sure that didn't make her happy, that part.

Right. But for a company to sort of pick a person to be the model, yeah, Becky Ogil was A natural person, but it speaks to her stature within the community that she would be singled out for that.

Yeah, that's what I mean. Also, so that everyone knows, I know that— I wrote these notes down. Yes, AAPD is honoring her longtime commitment to community activism, and they are organizing the friends and family of Becky Ogle With the Becky Ogle Grassroots Leadership Scholarship, you know, training young people, the people—

Maybe there's a way to share the link. So we've teamed up with the Midwest Academy, which is a very longstanding grassroots organization, not disability-specific, but for grassroots political activism. And when we were thinking over the weekend about what best way to sort of honor Becky's life. We thought sort of institutionalizing, in the best sense of the word of an institution, a permanent sort of scholarship that would support training in doing political advocacy, the kind of thing that Becky dedicated her life to. And so we certainly encourage people to direct any kind of donations to that scholarship fund so that it will in turn enable We haven't quite worked out all the details yet, but there'll be a process for selection of people to be the recipients of this scholarship and participate in the Midwest Academy's training.

Boy, that would be so great. You will have to keep me up to date on that so we can share that. Yeah, that would be wonderful. When do you think that could happen?

Well, we got the link set up and then the mechanism for making donations.

What is the link?

Uh, I, uh, uh, if you give me a moment, um, I know we're live here, but let me pull

up— That's

okay. Um, and, uh, I don't know if there's a chat here or how this works, but, um, let me grab, uh, a link. Uh,

while you're doing that, Justin Dart used to call her part of the SWAT team, right, when it came to military advocacy.

Tell you what, I'm putting it in the chat. I don't know if you can grab it out of the Zoom chat.

Yeah, secure.actblue.com/donatebeckyoglescholarship. Here's what I'll do, everyone. I'll get that out on Voice America's site.

Perfect.

You know, and also I'm Jay Bender at benderconsult.com. If you need to, you could reach out to me, but we've got to get that known far and wide, Jonathan. That is awesome. That's great.

Yeah, we'll figure out the mechanics of when we actually start the, uh, the application process or the nomination process. Um, uh, but we wanted to act quickly to get something in place.

Okay. Yeah, Becky was very close to the Clintons. Uh, I know her and Hillary Clinton were very close, and she worked, uh, in that campaign. Was she always close to President Clinton, or when did that happen?

Certainly by the time that I came into the picture in the summer of '98, you know, again, she was established there as executive director of the task force and was very close to Secretary of Labor Alexis Herman. And one thing I might share with you also, Becky and I had worked together with all of the appointees across the Clinton administration to document accomplishments over the course of the Clinton-Gore administration. And I was just looking over that before the show, pretty proud of the work that was undertaken across the entire administration, across agencies. But yeah, you know, a lot of the work that we did there, you know, around employment, Becky was right there at the heart of it and very much, you know, able to grab the ear of the Clintons and some of their senior leaders and Alexis Herman as well. And, you know, again, I think all of them would probably tell you on one level they couldn't stand Becky because she just pushed so hard and so aggressively. But at the same time, you know, personal affection for who she was and what she was able to accomplish. But, You know, she never made you feel particularly comfortable. I mean, she was not going to back down. So, you know, she took it to the Clintons and took it to the Secretary. But I think they're proud of the work that together with her advocacy we were able to accomplish.

Yeah. Senator Harkin had that hearing. This is maybe 15 years ago. I'm not sure exact. About the farm in Iowa. Were they in Iowa? No, they were in Texas, but somehow were connected with Iowa. Anyway, it was a terrible, terrible, terrible sheltered workshop. I mean, they stole money from these people, you know, from their Social Security. It was just terrible. Anyway, they were talking about sheltered workshop. And Becky was sitting behind me. And she yells out right in the middle of this proceeding, Senator, I don't call this sheltered workshop. I call that prison. Except she yelled that.

Yes, exactly.

Like, see how I'm talking right now? Becky never talked like this.

No, 100%.

Her volume was always there. So what I was going to tell you is that Tony Coelho, who loves Becky so much, like as you, he loves you. But Tony called me because Tony was the chair of the President's Committee. That's when I met Tony. And he said, hey, I want you to call this disability rights leader, Becky Ogil. I want you to call her and introduce yourself. So I called her and I said, Becky, I was referred to you by Tony Coelho. Do you have a second? She said, time's up. My second! She didn't really go. She just was being humorous when she said this. And that's just how she was with every— oh, I loved her. I mean, she And she loved Mary Brocker also. I can remember being at events where they had dancing, you know, whether it was AAPD or DREDF or someone to put it on. And she would— and Mary would be out there dancing like maniacs. They sort of fit each other's personality. Full of energy.

And I was just thinking, we worked over the weekend, credit to Liz Savage for the idea. There's an AI assist here, but we worked up a poem about Becky, and I thought it kind of goes a little bit with that story, but I'd be happy to share that if you're interested.

Yes, let's hear it.

All right. The title here— and let me just say, I'm glad that we were able to sort of write this in her presence and then share it with her. Obviously, we're working on planning a celebration of her life. And I'm often mindful, like, we say all these wonderful things about people and they're not there, at least on this earth, to hear it. And so this was something that we were able to share with her before she departed. The title is Make Some Trouble. Some people enter a room and take their place. You enter a room and shake things up. A Tennessee voice, a razor-sharp mind, a wicked sense of humor, and precious little patience for fools. You've never mistaken politeness for progress or good intentions for getting shit done, and Lord knows you get shit done. You've taken on Congress, presidents and politicians, bureaucrats and blowhards, and anyone else who thought they could tell you what wasn't possible. You've rolled through protests, blocked the streets, stared down the powerful, and helped change the law of the land. Not by asking nicely, not by waiting your turn, but by knowing what was right and refusing to back down. You've traveled this country with a book close at hand, a cause worth fighting for, and somewhere inevitably a little trouble to stir up. But you've never been all work and no play. There's the convertible, the top down, the wind in your hair, the open road ahead, the thrill of speed, the laughter of friends, the occasional wild idea that somehow becomes everyone's next adventure. A familiar face in downtown Bethesda, always ready for a good conversation, a spirited debate, or a book so good you simply have to tell someone about it. You have an appetite for life itself, for its pleasures, its possibilities, its surprises, and its sheer absurdity. Because what good is fighting for a better world if you don't take time to enjoy the one you're in? And those of us who love you know something else. The woman who can make a politician squirm can make a friend feel 10 feet tall. You don't just make friends, you become family. You show up for the recitals, the graduations, the performances, the games. Year after year, flowers in hand, a smile on your face, and a voice that makes sure everyone knows who you're cheering for. You're there for the triumphs and there for the tears, a confidante to our children, a friend as they grow, someone they know will always be in their corner. And heaven help anyone who threatens someone you love. When Maria had a bully, you were ready to take him on yourself. We suspect the bully had no idea how lucky he was that you didn't. You've been our fiercest protector, our most relentless advocate. No mountain too high, no fight too hard, no friend left to face it alone. Some people look at you and imagine someone who needs looking after. They have it exactly backward. You're the one who picks us up, the one we lean on, the one who stands between us and whatever the world has decided to throw our way. And there's no one better to have in your corner. And then there are the animals— the dogs, the cats, the horses, all creatures great and small, and all apparently convinced that Becky belongs to them. There was Lemon Twist, the Palomino of your youth, and Gremlin the cat who went to the pool on a leash. Because why on earth should a cat miss out on the fun? And Oliver, who lived to 19 but never outgrew his devotion— Claire might have been his person on paper, but the moment you appeared, there was no one else in the room. You've always had a way of making creatures feel they found their favorite human, and judging by Oliver, they were probably right. You don't fool— don't surrender ground, and don't hesitate to give a friend a piece of your mind or a piece of your heart. You've never needed permission to speak, to fight, to laugh, or to love. And you've taught us that justice doesn't arrive because the powerful suddenly grow a conscience. It arrives because people like you made it impossible to look at— to look away. So here's to you, Becky, to every battle, every laugh, every friendship, every door you've opened, and every door you've kicked down. To the open road, the unexpected adventure, the joy of being alive, and the sheer pleasure of raising a little hell. And to the lesson you've spent a lifetime teaching us: when the world tells you to sit quietly and be grateful, make some trouble.

That is beautiful. That is— you know what? That says it all right there. That is the best. That says it all. That's—

I thought I'd share it. I was kind of fumbling for words earlier. I kind of know what I want to say, but, uh, yeah, I, I felt like this is a good capture of the spirit, the political power, but that tender, gentle, loyal friend in your corner. Um, those 2 pieces.

That is beautiful. Would you be able to send me that?

Absolutely.

Wow. Well, we have another person coming on here right now with the news that I also know. New Becky Mathis on the mic. Jennifer Mathis, welcome to the show.

Thank you.

Well, as you could hear, we're honoring Becky Ogle. And I know you knew Becky Ogle. Do you have any comments about her?

Yes. I mean, it just, it is hard to imagine this world and this country and the disability community without Becky Ogle in it. And, you know, I think that she really will be her, her, um, spirit, her personality will live on. And I feel like she's gonna be a part of all of us moving us forward because, you know, we all can't help but hearing Becky in our head, you know, Becky with the comeback on everything, Becky with the, you know, I'm not gonna apologize for, you know, Something I don't need to apologize for. I am gonna, you know, what I'm gonna demand, what I should demand, and, you know, what our rights are. And, um, you know, we need leaders like that. We so desperately need leaders like that. She was so good. She was so effective, and she was so much fun, um, at the same time. Um, so yeah, I miss Becky terribly. But I think that, yeah, a piece of her will live on in all of us.

Yeah. You, when you said about the world without Becky, that's true because there isn't anyone that was like Becky. There isn't anyone. You can't recreate Becky. She, You know, she could make you laugh hysterically. But when she was coming, if there was something going on, you'd think, uh-oh, uh-oh.

Watch out. Look

out, Senator. Look out, whoever it was. Look out, she's coming. And boy, do we need that in the disability community today. Because, you know, people used to say to me, Choice, the advocacy, it's different today. You know, like when Judy Heumann and Becky and Mark and Justin and all the, Pat Wright were fighting the fight, that was for the ADA. That was, and they'll list all these things. Well, guess what, folks? That day is here again where we need disability rights advocates. Did you have news for us today?

I do. So I just wanted to highlight our voter guide, which just came out, our updated version of the voter guide that the Bazelon Center and the National Disability Rights Network have put out. We've been putting out a version of this guide since About 2000. So it's been about 25 years, and it really is an important guide for people with psychiatric disabilities, intellectual disabilities, cognitive disabilities, autism, any type of mental disability, because it really brings together a lot of resources. that you will not find in other places. So it talks about voter competence laws and practices that election officials, service providers like nursing homes, hospitals often engage in, and what your rights are. Voter competence requirements are where either a state might have in a law or A provider might just decide that, you know, they think that you aren't competent to vote. And some of the laws say if you're under guardianship, you can't vote, or if you're under guardianship, you can only vote if you understand— if you have the competence to vote, or you understand the act of voting, or some version of that. These laws, I think, are pretty concerning, pretty troubling. I think they often will violate the ADA, Section 504, the Constitution. Some of them have been challenged. It is often hard for people to challenge these laws in a timely way, so there haven't been that many challenges brought, but it is important that people know what their rights are. We also talk about a little bit in this This guide, what you can do, even if you're not going to bring some class action case or lawsuit challenging these laws, what you can do even in a guardianship proceeding to make sure that you can safeguard your right to vote or to get it back if you've lost it because you were placed under guardianship. It also talks about voter assistance laws because they're now, in the past few years, a whole lot more state restrictions on voter assistance, but people still have rights under both the ADA as well as under the Voting Rights Act, Section 208 of the Voting Rights Act. And so you are entitled to assistance from pretty much anybody you want. It can't be your employer or your union, but anybody else can assist you in any part of the voting process, registering, voting, that is important. It catalogs voter ID laws and what your rights are there, talks about voter challenge laws. It has lists, it has a state-by-state chart of all the states' laws on voter competence so you can find out what the law is in your state. Also links to a couple of other state-by-state charts on absentee balloting and On voter challenges. And so there's a lot of stuff there that really, I think, is put together in a way that is unique and isn't available anyplace else like that. So it has— it's now broken into a part of it is for lawyers and a part for people with disabilities and the families and their advocates. And so it's a little bit easier to use. We revamped it this year. So that is Something that you can find on our website. It's on bazelon.org, B-A-Z-E-L-O-N dot org. It's right on the homepage right now if you want to look for it. It's also on our voting page.

The only way we can make a difference is if we get out there and vote. That's it. You got to vote. You can't talk about it. You can't sit back and talk about it. You've got to get out there and vote. Becky Ogle would be at first at the front line voting, and Becky Ogle would have a ton of people behind her voting. She was also the cheerleader.

Yes.

Of others. Well, you said that like when you were playing the trumpet. Yay, Jonathan! She was a cheerleader. And you know, I don't know what you think about this, but like, we've got so many between going into an institution, Medicaid cuts, what you just talked about, the 7% aspirational goal gone. I mean, we can go on and on here. We need a Becky Ogle. We need a lot of them. But, you know, see, the difference is Becky did not go in and say, We're very upset in the disability community.

Could I please? Right.

I really need you to hear me out. Oh, you heard Becky out from the minute she walked in that door and she said whatever she thought. That's what we need.

I would also channel Justin Dart's phrase, get into life— I'm sorry, get into politics as if your life depends upon it. Because it does. And I'll share with you also, Joyce, the Clinton-Gore accomplishments. It's sad actually to look back at how dedicated and aggressive that administration was for people with disabilities and whatever faults people might have rightly had about what we weren't getting done at the time. It's a stunning contrast to some of the things that you just recited here and many others. None of that effort happens without people across the community, you know, at the grassroots level demanding for that kind of attention. So hopefully we'll get that back. But I love, Jennifer, your emphasis here on the voting guide. We could make it a little bit more particular, get it, vote as if your life depends upon it, because it does. So I'm proud to say I've already submitted my Maryland mail-in ballot, but for those of you who haven't, of you who've not— in the United States and not yet registered, uh, please get out there and vote. Whatever your affiliation, uh, please make your voice heard.

Yes.

Becky would tell you to vote.

Yes. And, and listen, I heard some, uh, politician— uh, not a politician, an anchor person— saying— was maybe on Morning Joe, I can't remember where— but he said, Well, what's going to tell the tale at the midterms is there's one group of people that I assure you, they're going to be out there voting. We need to be that group. You know, it's not going to help to sit back. And you know what? Have a plan B. If you don't know how you're going to get there, have a plan B. Or call your independent living center. Or do you have any other suggestions, either of you, for people that epilepsy, you can't drive? You know, there are different disabilities, you're not going to be able to get there. What do you usually recommend to people?

Yeah, I mean, depending on the issue, sometimes also in addition to the independent living center, sometimes It makes sense to call the P&A.

That's it.

Depends what kind of issue you're having.

Yeah, that's it. The Protection and Advocacy Group. How you find that is just go— is it ndrn.org? .org. Okay, go to that. I'm sorry, what's the full website?

It's ndrn.org. You're right.

Yeah, okay. Go to that website. You can look up who is the protection and advocacy group in my city or my state. Is it state or— State. State, in my state, because I know that I worked with them and they said, listen, we're going to put together like people in our community, whether it's Philadelphia or Pittsburgh, disability rights advocates that will get there with cars to get people You know, accessible vehicles to get them where they have to be. So you've got to get Plan B though. You can't miss this. You have to be there. You heard the things I just said, right? 7% aspirational goal gone. So what does that mean? I talked to this company just last week. I am not working with them. Yet. I don't know if I ever will be after my comment to human resources. So Becky, you'd be proud of me. You know what they said? Just so you know, we can't hire people who are deaf. And I said to myself—

That's shocking.

This is a violation of the ADA to human resources. You've got to do something. But you know what? I think some of these people are thinking, what's it matter?

Yep. The message that they have gotten in the current environment with the current administration is there are no civil rights anymore.

Yeah. I mean, what— is there even an OFCCP? Are they still there?

I'm not sure they— I, I, I— well, they were supposed to have been disappeared and collapsed into, in part, into the EEOC. The 503 enforcement's supposed to go to the EEOC. I think there may still be, at this time, still some shell of OFCCP that continues to exist, but effectively their functions have been off-boarded onto other places.

And I will also maintain that in the United States, there are people in HR that actually would be afraid to do anything about that because they would say DEI, they would say all these things that, I mean, the ADA is still the law. The law is the law. But I could, you know, I could hear them saying that. I mean, this gave hope to everyone, reinvigorated. You know, we're going to check to see if you have that 7%. Not now. All gone, not to be enforced any longer. And then as you talk about right now, I'm wondering what would happen if someone does go to vote with an intellectual disability? I mean, could they say to them, you can't vote?

Well, that has happened to people sometimes, or sometimes people have been told they have to take a test or something. People's ballots have been thrown out based on where they live. Mostly that is not happening as much now, but people need to be aware because these things will happen again. And so people need to know what their rights are. If you show up and you have an intellectual disability, if you're not under guardianship, then, you know, there isn't even a state law that would preclude you from voting. If you are under guardianship, there might be a state law that precludes you from voting. I think that state law would be likely unlawful under federal law. But, you know, people need to then deal with that because a lot of times what happens is people do get allowed to vote, even if they— you know, there are some states that have a blanket ban on voting by anybody under guardianship, but the way that that law is interpreted is a little different, a little narrower. And so I think, you know, you should always, if you're not sure, the bottom line is if they won't let you vote, then you can vote a provisional ballot and then you can sort it out afterwards.

See, I, I really think it's this fear that— and confusion. I mean, it was so different with When you were talking about President Clinton, I can still remember being at Vice President Gore's, what he would call— they called it a barbecue, but of course everyone's there in suits and ties or business attire. I can still remember him saying, I won't let you down with Olmstead. Well, look what's happened now. Yeah,

180 degrees.

Yeah. How many things are unwound? And I think it's an important message for all of us. We like to celebrate and should celebrate our legislative and executive accomplishments, but we can't ever take them for granted. We've seen how quickly things can get unwound. When I think back the history of the ADA and through the '90s, how many things— well, and beyond— how many things we worked so hard for and felt like we'd sort of arrived in certain And a lot of that's been unwound. And it's sad now that we don't have the Beckys and the Justins and others. So it's really incumbent upon a new generation to step up and continue that fight. Never ends.

I was with Tony Coelho when he went in and told President Obama. I was with Tony and we told Valerie Jarrett, I'm sorry. And she went in and told President Obama about the proposed rules with Section 503 of the Rehab Act. That's when the new rulemaking came out.

Yep.

Yeah, I mean, it was so different, but I have a new saying. You want to hear it? Yes. Be a Becky. That's what I'm going to be telling everyone. Be a Becky. And then when they say, what's that mean? Then I'll tell them what it means. But you need to be a Becky, be like Becky Ogle. You've got to— you can't cower. I mean, you don't have to protest where you're going into jail, but you can still make good trouble by just speaking up. Don't you agree with that?

Yes. And I would say be unafraid. If there was a single word to me about Becky, just fearless. unafraid. She said what she felt like she wanted to say. She did what she wanted to do, and she never feared repercussions. And that takes guts that I don't think many people had, but we could all learn to harness that.

Yes. Well, Jonathan, thank you for being with us today. And Jennifer, I'm glad you also shared your feelings about Becky Ogle. And I have to end the show with this quote. Which, Jonathan, you've already used, but I'm still going to use it. And that is, vote as if your life depends upon it, because it does. And boy, with what's happening today with Medicaid and everything else, truer— no truer words spoken. Vote as if your life depends upon it. And Mary Brocker, I always end with Mary's quote, choose joy, you won't be disappointed. When I think of Mary and Becky up there in heaven, when I think of them, man, they've got those angels swirling around everywhere. So remember, be unafraid. As Jonathan said, One of the words I love, unshakable. Be unshakable. So I'll talk to you all next week. Remember, Disability Mentoring Day. Jonathan Young started it this Wednesday. And Jonathan, you'll be so proud to know we have all these students coming in to the Bender office. Awesome. And we have the largest disability mentoring regime In the country, we had 700 students last year go to companies. Um, and so proud of you, proud to know you, Jonathan.

Likewise.

I'm proud I knew Becky. I'm proud I had Jennifer with me, uh, as co-hosting all these shows. And, um, fight on. Awesome. All right, everyone, this is Joyce Bender. America's Voice, where disability matters, at voiceamerica.com. Talk to everyone next week as we continue celebrating Disability Employment Month.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11:00 AM Pacific time and 2:00 PM Eastern time. 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.