John D. Kemp: Disability Rights Leader Discusses Mission of Lakeshore Foundation and Years of Dedication to Disability Rights

At Highmark Health, we believe what makes us unique makes us better. Our differences broaden our perspectives and foster a variety of skills to complement each other, creating a stronger and more vibrant workforce. It's this belief that earned us recognition as the Best Place to Work for the 10th year for individuals with disabilities in a survey by the American Association of People with Disabilities and Disability:IN. We'll continue to celebrate and benefit from the inclusion of all people. To find out more, visit highmarkhealth.org. 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, how are you? So nice to be with you. I love being with you. I look forward to this show. Every week, and I so appreciate all of you listeners. 22 years. Can you imagine that? I've been on the air 22 years, and last year was my 1,000th episode. So, um, couldn't do it without you. I mean, if I didn't have you, and you all care, you care about people with disabilities, Let me just make this clear to you. The more people you can get to listen to this show, the more opportunity they'll hear about. About once a year, we have a show from Bender just talking about open positions, and that's going to be next— no, wait. Yeah, June 2nd. So tell everyone about that. You know how many people don't have jobs? We got to help those people. So tell everyone. And a special shout out to Yoshiko Dart. Every show I do this. I love Yoshiko, but I want everyone to remember who Justin Dart is. She is the widow. Of Justin Dart. But I want everyone to remember how he was the great disability advocate and did so much, you know, on the ground, feet on the ground, to get this signed, the ADA. So that's why I do that on every show for years. I've done this every show for years. And A special shout out to those 133 countries listening to the show. You know, every show I have to focus on a company— country. I do want to tell you though, guess who is second on this broadcast? Listeners right beneath the United States. And of course, I announce this every week and it hasn't changed. Singapura. Singapura has the most listeners after the United States. And it keeps getting larger. I don't know what you're all doing there in Singapore, but keep spreading that news. You know, you are being a country that wants to make a difference. I applaud you. And then right after that is Brazil. So, well, you know what, I'm just going to tell you the top 10. After the United States, Singapore, Brazil, Spain, China, India, Taiwan, Canada, Japan, and the United Kingdom. And today our special shout out is to Ghana. Now, As I always say, there only may be a couple people in Ghana listening to this show, but one person can make a difference. One, one person. If you get this news out, if you tell people to go to the American Embassy and tell them you need a place, you want to be able to hear this show, one person, one, can make a difference. So, so great. So great. Every week I have a shout out to a country. And thank goodness, I have a long way to go. So I have to also give a shout out to Highmark. Highmark is the lead sponsor of this radio show, this podcast, and has been That's it. They're the lead sponsor. They are the lead sponsor. Thank you, Highmark. Thank you, David Holmberg and Karen Hanlon, the top two people at Highmark, third largest insurance company in the United States. How about that? So thank you. Thank you. And I have to tell you, I really look forward to this show. Now, I don't want you to think I don't look forward to other shows, but this one is special to me because John Kemp— I don't know very many people in the disability community that you could say, "John Kemp," and they would not say, "Oh yes, I know John Kemp. Yes, wow, he did so much for the disability community." I mean, so you know, This man is like a legend, and I am not kidding you. He's won so many numerous awards, but he has done so much for all of us. You all know I'm living with epilepsy, and anyone that helps people with disabilities is a champion to me, but he already is known. He already is a champion. He doesn't need me to tell you that. So, John, Welcome to the show.

Thank you very much, Joyce Bender. It's an honor to be with you, and I have always admired you. Always, always. Our friendship goes way back.

Way back. I'm going to tell you how far back I know you. You didn't know me, but how far back. It was at Procter Gamble. You were the speaker. And you did that thing about hair. You know what I'm talking about? About hair? About, yeah.

Being a hair amputee?

Back and forth about being bald, about being this. It's something you did. It was so funny. But that's how long. So that's really long. But then I had the pleasure of getting to know you. That was the best part. And we have been friends. Ever since. But you know, when I read your background or your book right here, everyone, it is Disability Friendly: How to Move from Clueless to Inclusive. You can get this book on Amazon or Barnes Noble, but you should get this book It is a great book. I'll be reminding you, but just so you don't forget, there it is. You can see it.

Okay.

So, John, as I said, as you, as our listeners would read in this book, you have done so much with your life. I mean, wow. It's amazing what you did with a significant disability. And, you know, to people with disabilities and to companies listening to the show, stop labeling people saying, "Oh, they wouldn't be able to do it." So John, how about if you give a brief background of your journey from, you know, finding out you had this disability to your journey on to law school. I know at a very young age your mother died, so you had, to me, one thing after another that you had to deal with, barriers. So I want our listeners all around the world to hear your story, so take it away.

Well, thank you for the opportunity, and, uh, it's just delightful to be with you. And when you say Singapore is your second largest country audience. It makes me smile because I've had the privilege of being in Singapore with the disability rights folks there and speaking with them, and they are very interested in doing the right things for people with disabilities. They want our full participation, and they see aging and disability collectively and treat seniors and people with disabilities with a great deal of respect. So it's, it's not surprising that they are very tuned in and very appreciative of what information you bring. But to your question and request about my, my mother and my dad, I grew up and was born into, born into a family that didn't know they were going to experience some adversity. As you never know how straight a line your plans are, and sometimes they really aren't. But I was the second of 3 children born. I was born, gosh, 4 months, 4 years after my older sister was born. And within 3 months, my little sister, my mother was pregnant with my little sister, and she said, I don't feel well, something's not right. And they went in for surgery just to do exploratory surgery and found out that she had ovarian cancer. While carrying my little sister. And so it has just been kind of devastating for my dad. We were too little to really appreciate it. My older sister, then 4, 4 and a half, 5 when my, when my mother gave birth to my little sister, has one glimpse that she can recall talking to her and seeing her standing in the kitchen. She was 36 years old and dies of ovarian cancer on December 31, 1950. And my dad is 32 years old and he's got 3 kids, and the middle child is born without arms or legs, off at the elbows and the knees, and that's me. So somehow he, he happened to have 3 sisters, and he gave each one of us to his 3 sisters to just take care of them for a couple of months until he got his act together. And he— we have no idea what he did. He will— he never talked about it. A very devout guy, very religious, very, very Catholic. Um, and he came back around, picked us all up, and said, we're going to be a family forever. Done. That— not— we're gonna, we're gonna, we're gonna get through this. And he figured out that he would hire housekeepers and people that would live in our home. And he was a middle manager federal government employee for 30 years. So we weren't rolling in dough, and he had no money. And I, I slept in the same room as my dad, and my two sisters shared the only other bedroom, and we all shared one bathroom. And then our housekeeper lived downstairs so that my dad could travel a little bit in this job with the, with the Federal Highway Department, Federal Highway Administration. So he was in the U.S. Department of Transportation, and so he was always been a career federal, federal and state employee and did very, very well as a government employee. But my point is, he had the foresight to look down the road and say, what are the options for Johnny? And He saw too many kids being isolated and not participating in society and possibly not even working, and he just could not imagine that I would ever be in that path, that I would never work and I would never participate. So on my mother's deathbed, they had a little talk about what they would do for each of the kids, and for me, he promised her that he would do everything he could to get me into regular schools and make it— make certain that I would ultimately get a good education and would work wherever I could and do whatever I could, and that I would become self-sufficient. So as we all do, and I'm sure you did this as well, Joyce Bender, we all try to live up to the expectations of our parents, for no matter how old we get, and we still, after they have moved on to heaven and, and where— wherever else they could possibly be, I think we still hear their voices and we still think, I gotta, I gotta do what's right. I've got to fulfill this vision and this commitment that my dad made to my mother. So my dad is— my dad's my hero. My dad's my guardian angel. He is everything I could possibly have ever asked for. He went to the school systems and fought to get me in, in the regular public school system in Bismarck, North Dakota, where I grew up, and then later in Frankfort, Kentucky, where I went to high school. I was in a Catholic school, and then to Georgetown University, and then to law school out in Kansas. But my dad set the trajectory of me being independent and getting as much education as I possibly could. I thought I was going to be a baseball player because he would play catch with me. And I was 8 years old and I knew all the teams and all the players. And I was the smartest 8-year-old on baseball ever. And I said, I'm going to be like Mickey Mantle. I'm going to be like Mickey Mantle. That's who I'm going to be. Or Hank Aaron. Hank Aaron is actually my hero as a baseball player. And so he never popped my balloon. He never discouraged me, ever. He didn't say, get real, you'll never do it, you don't have arms and legs, you can, you run really slowly, you can't bat, you can't throw the ball very far. Never said any of those things to me ever, ever. He just let me go and find out, like the real world will teach you, you're good at this and you're not good at other things. And so I, I owe a lot to him. That's, that was my childhood and it was a really beautiful childhood and we didn't, have any idea whether we had a lot of money or no money. We had no idea. Made no difference. Never talked about it. Went to regular schools, had a, had a just a magnificent life. And my sisters to this day are my just best friends. We were just really tight. And I think not having a mom and having a really wonderful dad and kept us close together all the time, um, it was really valuable. I had a, I had a great life. So I was sort of destined to be in the community working and earning my, earning my way. But he was so smart and so talented that I was like trying to live up to his expectations for myself and not let myself fail.

Wow, that is such a great story. And I hope if you're listening, you have a person with a disability, anyone, it's all about you. It's all about Uh, not being afraid. It's all about realizing that disability does not stop you. Disability does not define you. Yes, you have a disability. You never should be ashamed you have that disability, but that does not prevent you from working. Um, and John is one of the best examples. Uh, John, When you— what you mentioned, you went on to George Washington and law school. Did you encounter, unlike your father and family accepting everything, did you encounter stigma, uh, or barriers in school?

Yeah, that makes me think of a couple of hurtful, uh, moments in my life, but for the most part, unlike a lot of people with disabilities who I know and you know, they have really had terrible treatment. They've been called names and they've been insulted publicly and just horrible stuff happening to them. And I kind of lived in a little bubble, I guess, you know, and I look back on it and it almost jolted me out of who I was. I just thought, I guess for a while I was passing as a non-disabled individual. My dad was actually encouraging me to kind of like keep up, keep up with the other kids. You can't get behind. It's going to hurt you in your career and your education. So I was always trying to get there, and I had to walk across the Georgetown campus to this class and that class, and I didn't have a scooter wheelchair, which I have lived with for 40 years, but I never had any of that wheeled mobility, which I could have really benefited from. But I was taking a, a, a sophomore English class, and the gentleman is dead now, so I'm going to say his name— Professor Don Herdick. And Professor Herdick saw me in his class with 20 other students in this English class, and he looked at me and he said, You have a disability. You have a handicap. He was calling it a handicap. You have a handicap. And Georgetown is no place for people with handicaps. You don't belong here. And I was like so shocked and embarrassed. And my classmates were like, what is that all about? And what— why would he say something so mean-spirited? And did distasteful. Instead, like, if he had some really grudge, he'd talk to me, but quietly. But he just laid it out there, and like the first day of class, I was mortified. I had— I finally thought of— I thought about it and thought, I'm gonna go to the dean of students and just have my— to have my say. And then I went to the dean of the College of Arts and Sciences and told him how he had treated me. I said, that's just not, not appropriate. My dad taught me respect and values, and that should never happen. So that was one rude awakening. But for the most part, I learned how to drink beer through a straw. I got to all my classes. I was an average student. I, I thought socialization was as valuable as a really strong education. So I thought learning how to get along with each other was really, really important as a disabled person. And it is. It really is. They got to see the people. They got to see the human being here and not just the metal and the wheelchairs and the pink canes and hearing aids and things like that. They just— they got to see us. So my dad was like, you can do better in grades. Don't give me that nonsense. I was trying to, trying to talk a little smack with him, and he just about smacked me right back when he saw my grades. But I was having a lot of fun. And did graduate from Georgetown on time and well enough to— did well enough to be able to get admitted to Washburn University School of Law. And I had met Bob Dole, Senator Bob Dole, one of our dear friends and one of our leaders in our community, when I was a freshman at Georgetown in Washington, D.C. And I went down to the House dining room for a luncheon with him. And got to meet him thanks to the National Easter Seal Executive Director then, Jane Shover. And she introduced me to Bob Dole, and she goes, this guy is going to be huge. He's going to be really famous someday. And he's a very severely disabled wounded veteran, left for dead in the north of Italy and came through it all. And he was so brilliant. And he was— everybody in Kansas loves that, loves, loved Bob Dole. Um, so I, I went through, I went through Georgetown, and Bob Dole was very helpful in helping me get into law school where he went to law school. And my family had settled in Kansas, and he went to Washburn University School of Law in Topeka, Kansas. So I had a couple of bishops and Bob Dole writing me letters of recommendation, and then I had my grades, which are, uh, You know, okay. And I got in and I did fine. And so the second event that was kind of a slap across my face that I wasn't expecting, I asked this girl, this young woman, to go out on a date. And we went out on a date and I walked her home and I thanked her and I said, maybe we can do this again. And she said, I don't think so. She goes, I, I'm having a hard time accepting the fact that you have so, so such disabilities, some, so many handicaps. I was like, what, really? I mean, does that make a difference to you? And I was just stunned. I had never had that other than that professor at Georgetown. No, no peer, no other student had ever said anything. Trashing. Maybe they thought it, I don't know. Nobody ever told me that. But then a young student who I was dating, trying to date, gave me the kick. And it was like, wasn't my personality, it was my physical disability. And I was like, geez. And so I remember talking to my dad about it, and he gave me, as usual, excellent advice. And it was like, he said, in those situations, you have to ask yourself, Who has a handicap and who has a disability? And it was like, gosh, I'd never thought about it that way. And he had never talked to me like that. And he said, you know, a disability is something kind of permanent or for a long period of time that really limits you physically, cognitively, emotionally, something in some way. But, you know, it's there. A handicap is something like a shiny round doorknob that you can't open because you use prosthesis, or it's somebody's negative stereotype and they're thinking about you that presumes you can't do something. Those are external to you and your body and your mind, and, and those are handicaps to you. I was like, so she has a handicap? And he was like, that's, that's how you should distinguish it. All you can do is feel sorry for her and try to help her understand who you are, and that's the way you should go through life. I was like, God bless. I really appreciated that advice, and I— it stuck with me my whole life. Joyce, I got to tell you, when I talk to people and I can tell they're uncomfortable for a couple of minutes, but it only takes a couple of minutes for us to connect. And that's— I'm talking about for all of us. I mean, people with hidden disabilities like yourself, people don't get it at all. And they have a hard time understanding and even believing that you have some kind of a limitation, a disability, or in some way. So it's, it's just something that you and I have figured out how to work around and how we talk around and how we get people to connect with us. And it is something on us, and it shouldn't be. And I think part of our civil rights movement is we want to be independent, we want to be respected, we want to be— we want to have dignity as we live our lives. But sometimes it takes a little more than that to help people get through the looking glass.

Okay, John, please don't get upset with me, but I have to say something. I don't like those two people.

I don't either. I don't either.

I don't like them. I don't like them at all. Well, you know, look at it this way. You wouldn't have possibly met Sam. Exactly.

Exactly.

John has an absolutely beautiful wife. She is awesome. I like her so much. Uh, Sam is fantastic.

She's a beautiful soul, and she's very pretty and beautiful too, but she has this incredible personality that just listens and asks and inspires people. And just people get so excited. I swear, we, we go to a party and Somebody says, hey, John, it's nice to see you. Is your wife here? They're done with me already. They want to talk to Sam. That makes me very proud. And I love her, and, and she's, she's allowed me to have a family. I did not have children of my own. She has two beautiful children from her first marriage, and they're in their early 50s, and we've got 5 grandsons. 17-year-old today is the youngest, all the way up to 24. And that young man is working at PWC in Charlotte, North Carolina, and getting, getting his master's in business administration.

Oh, how impressive.

That's great. We got beautiful—

what about the one in Pittsburgh?

The one in Pittsburgh is the oldest of our daughter's 3 boys. We have 5 boys, so there are no tiaras and tea parties ever in our raising our guys. But Sam is a guy named after my wife named Sam, Samita. And Sam Hoff is working this summer in Pittsburgh, in your hometown, for a logistics company. And he got an apartment right next to the Pittsburgh baseball stadium so he can go to the baseball games as often as he possibly can and drive out 30 minutes to a suburban job in a log— with a logistics company. So that's—

first of all, he's in the best city in America, as I know our newscaster will tell us, tell everyone. And when he comes here, my whole wall, all Pirates, Pirates pictures with— I know Is it Willie Mays you said is your favorite?

Hank Aaron.

Hank Aaron. Okay. Well, on my wall is the great Roberto Clemente.

Oh my gosh. Yeah. Legend, legend of Pittsburgh. Yes. Died just in a horrible airplane crash doing humanitarian work. Yes. What an incredible, that's, that's so great to hear.

Yeah. Well, it's time for Mathis on the Mic, and Jennifer Mathis could not be with us. So superstar Holly O'Donnell, CEO of Basilon, is with us. Holly, did you hear where Sam goes to? He's in Pittsburgh.

My grandson.

And you know how great Pittsburgh is, you know.

I do. I do. I haven't, I haven't been there since, um, I was there for the Bender Leadership Dinner.

And you were awesome as our keynote speaker. You were fantastic, Holly. And Holly, as I said, is the CEO of the Baselon Center for Mental Health. Law. I'm very honored to be a trustee on that board, uh, and I love this group so much that I am a sponsor, and yet I can't be there. Why? How could it be that my niece would pick that time to get married? Imagine that. Um, but if You don't know about it. Holly, before we start with the news, when is the gala? And of course, I know they can go to bazelon, B-A-Z-E-L-O-N, dot org.

Yes. So this year we are thrilled to have our annual awards gala on September 16th. It's a Wednesday. We are having it at the National Press Club here in Washington, D.C. It is, I mean, it's a wonderful event. And, you know, I would say for a Washington event, it's inspiring and fun. And it's a great mix of people who work on the Hill and lawyers and advocates. Um, really, like, over the past, I don't know, almost 10 years, we've created a, a really special night where we give awards to people who, um, care about people with disabilities, particularly mental health disabilities. And it is a way that we are able to raise money and raise general operating funds, which is really important for us through sponsors, um, like Bender. So thank you. And you can learn everything. We even put tickets on sale early this year, so you can get your ticket now, um, and at www.bazon.org.

And it is fantastic. It's killing me that I'm not there. I know, but I do have guests coming. I do have guests coming. So, um, well, Holly, do you have news for us today?

I appreciate you letting me, um, stand in for Jennifer Mathis on Mathis on the Mic. So yes, um, the news that we are sharing, uh, with you and with your listeners today is that last week we saw a continuation in the administration's anti-fraud efforts targeting Medicaid services for people with disabilities and older adults. The Centers for Medicare and Medicaid Services, known as CMS, Anti-Fraud Task Force, which is led by Vice President Pence, to withhold $1.3 billion. That's billion with a B. In Medicaid dollars from California. Um, and the majority of these funds, $1.1 billion, again, billion with a B, are specifically for in-home supportive services, which, um, it's known as IHSS. This program serves 900,000 older adults and people with disabilities in California. California itself described IHSS as a cornerstone of their efforts to keep people safe at home and out of costly institutions and keep people in the most integrated settings as required under the Americans with Disabilities Act.

Act.

So Joyce Bender, you might ask why CMS is deferring this money, and they claimed that California has a higher rate of growth in home care. And I want to be clear that they did not, they did not provide examples of documented fraud. And so I got a little curious about this myself and did a little more research in terms of what type of growth CMS was saying. And it was— they said there was a 17.5% increase, and California appropriately pushed back explaining that there was an increase in the number of people served. There was an increase to the cost per hour, and that's based on increases of minimum wage and also county wages requirements, and also an increase in the number of IHSS per hour costs due to the need of individuals. And I mean, these are services that help people get out of bed, you know, bathe, critical for people being able to stay at home and live in their communities. So I thought you would probably— and oh, the other thing is that CMS was saying that this was an increase in comparison to other states. So that it was a statistical outlier. And so I know, Joyce, you often ask, well, what can people do? What can your listeners do? And I think being aware of it for most of the folks is important and being knowledgeable about what's going on, but particularly for your listeners in California, those of you listening today, or if you listen to the podcast later, to call your representatives. And for your— for House members, the number is 202-225-1111. 3121. Uh, for your senators, 202-224-3121.

I just want to say a couple of things. First, Holly's right. If you're in California, you have to take action. You know very well that Jennifer has asked you before to make calls, send emails, and there has been an impact. So you have to do this. Don't, don't say, oh, that's terrible, and not do something. You have to take time to get in touch with your representatives and say, I don't want this to happen. I am opposed. Because you know what else, Holly? It will prevent people with significant disabilities from working. Yes. Because they won't, you know, I have someone that people thought, oh my God, he's so significantly disabled from cerebral palsy. You know, how would he ever work? And he has someone that comes to the house, you know, Medicaid comes to the house, gets him up, helps dress him. Bathe him, all of this. Without that person, he would not be able to work.

Yeah, I think the other important thing that I, um, want to note is it also employs so many people, this program, um, and also that California is— I don't know exactly the right term, but I mean, they're covering this disruption so that people in funding, which is like a reimbursement, so that services haven't stopped now. I don't know, and, you know, Jennifer could talk about it next week more about how long California can cover this., with, with their own money.

Are you saying they targeted California?

I'm saying that this happened in California and that it happened, and, um, you'll remember, your listeners will remember that it happened in Minnesota, I think in March.

Hmm. Think about that. Minnesota and California. Yep, I can see what happened there. Uh, John, I see you shaking your head, and I know you think this is horrifying. Uh, Holly, he was telling me he's in Alabama, that there's a reason it's not a big impact there. Do you want to share that?

Sure. Alabama didn't take the Medicaid expansion, is one of the 10 states or so. So there's— now that they're cutting back, it's not going to affect Alabama. It's always been poorly funded. And, and a lot of people do without here that have been enjoying it in other states. This is targeted. This is political. And I had the privilege of serving on the 2006 Medicaid Commission that was chaired by Secretary Tommy Thompson from Wisconsin, who was the HHS secretary. Jeb Bush was on there, a couple numerous luminaries, and then somehow I got on. The issue of fraud came up. And so they had a consulting firm go back over the history of the Medicaid program back into the '60s. And track it forward. And what was the representation or the percentage of fraud found each year? And it never varied more than a quarter of a percent, and the average was 1.5% of all of their outlay was possibly fraud— not proven fraud, possibly fraud. And so it's never been a huge number, but when you're in the billions, it's a lot of money. And, you know, we should not tolerate fraud, but this is playing to an audience that is looking for any reason they can to cut back on services. And we're the victims as people with disabilities who are getting picked on. But there's no greater fraud today, in my opinion, than there was when the program started and when I was on the Medicaid Commission. This is a smokescreen.

A smokescreen, but we can make calls and do something about it. And Holly, I thank you so much for bringing this to our attention. Um, and I'm sure that Jennifer will continue, uh, next week. Don't forget everyone, basilon.org. Check out that gala.

Yeah, and John, thanks. It was nice to see you.

Nice to see you too, Holly, and I just have immense respect for your work and for the Bazelon Center and for Jennifer as well.

Um, thank you.

Thank you. Very close and doing lots of good work, but you all—

yeah, she was saying that it was, it was nice, um, to connect with her before seeing you.

Please give her my best and Keep raising that money because you, you're going to need it and you do great work. And thank you, Joyce, for supporting them.

Thank you.

Thank you.

Bye-bye, Holly.

Bye. John, I had a call from some people with disabilities and they said to me, oh my God, so many terrible things are happening, um, since this DEI thing. What can we do? I said, well, I'm going to tell you two things you have to do. Number one, you have to move forward. You can't just stop. You have to keep moving, whether you're an advocate, you know, a citizen, an employee, you've got to keep moving forward. But number 2 is we all need to communicate because the only way we can all help each other is if we're talking to each other. But I am wearing today, and this is only because it's Pittsburgh, this is like a little slang here. It says, I voted in that. In that.

Amen.

In that. Yeah, I voted in that. Pittsburghese. Um, but I want to say, you do have a voice, and we try to use it.

Vote. Absolutely. And today, I'm— I haven't voted yet, but I am not going home until I vote. And I'm going to vote even though I may get outvoted. That's pretty likely being in the South. But a lot of my friends, my new friends here in the South with disabilities are suffering and they're going to suffer more. And I can't sit still and let that happen. So I am going to speak up too. And I'll speak up on the national issues and on the state issues, but Medicaid and Medicare are so intertwined with services at the local level that I've got to say something about the policy. Some, you know, the state adopts Medicaid rules and has the right to reject them unless they're mandatory services. And one of the big ones that we're working on is oral health and disability, and that's Mandatory until Medicaid recipients turn 18, and then it becomes an optional service for a state to offer oral healthcare. And it's such a critical need for having a clean mouth and it's well cared for, and a lot of diseases will stop and, and sicknesses will stop by having better oral healthcare. And we're working with our, our state dental association. I worked with UPenn, University of Pennsylvania Dental School, College of Dental Medicine, on this very issue for the last— I'm still on their advisory council. But we are looking for accessible local dentists' offices and culturally competent people who are trained to meet with a variety of people with disabilities, and they can get good oral healthcare at their local destination. They should not have to go cross down to a hospital, God forbid, be put under general anesthesia, have teeth pulled instead of treated and cavities filled. And, you know, it's just still inhumane. Too many people with disabilities are poorly treated in oral healthcare. So all the, all your wonderful listeners who are dentists and oral healthcare providers, this is a really important issue to us and we're going to keep on raising it too. But gosh, that was a good report by Holly.

Yeah. Uh, John, I don't want to end this show today without talking about your book. So first of all, what caused you to write this book? You know, what gave you the inspiration to write this book? And you also talked about disability support benefits, how they factor. So first of all, why did you start? Why did you decide to write it? And what did you want it to do? What did you want to convey?

I'll bet that you and I have given close to the same number of speeches in our working lives. And that's probably thousands, right? I know you, and I, I've given about that many.

I'd say you've given more than I have, John. You, you're like celebrity material.

No, you're a celebrity.

Yeah, go ahead, go ahead.

I, I, I just kept giving different viewpoints out there and people would say, have you written a book? Have you ever gotten this down on paper? And after about 5 to 10 years of hearing this, I thought, oh gosh, it's not that impossible. I guess I, I could think about it. So I started thinking about it, and while I was at Piscardy on Long Island, I contacted a— or was contacted by a literary agent and said that I would like to see if a publisher would be willing to publish your book. And sure enough, Wiley agreed to publish my book, and, um, I started on my way. And it took about a year to— a year to finish it, and it was a lot of work. And I did my CEO job while writing this book, um, and it's really in 3 parts. You know, the first part is very autobiographical And it made me very happy about what my life has been, and we talked a little bit about that today. The second part was really about how people with disabilities live their lives and what is disability culture, and really going deep into understanding what do we want and how do we get it? And how do we get and earn the trust and respect of others and give the same to others as well? How do we be good citizens of this world when we are in need sometimes and take sometimes more than we can possibly give back? And so the second part of it is a real deep dive on disability culture and disability identity. What does my disability, because it's apparent, What does it present to people, and how do they perceive me because I have an apparent disability? People with non-apparent disabilities have a bigger challenge in this area and to gain the understanding and the trust and respect. So that's the second part. And the third part is a blueprint for employers who want to know how they go about finding people, qualified individuals with disabilities, recruiting them, training them, selecting them, giving them on-the-job supports and services, and then having the courage to terminate them if they're not able to do the job. And I think one of our barriers in this process— and this is— I say this in my book— is that people are so afraid of being identified as the the jerk who fired the disabled person. How could you possibly ever do that? That they never get started with that person as an employee. So they say, I'll find out, I'll come up with every other excuse I can to not hire this individual with a disability, because God forbid, I don't want to be the person labeled as I fired a disabled person. That is bad, bad, bad, bad, bad thinking, bad judgment. We need to be treated like everybody else, and if we're not doing a job well, then we need to be guided, supported, trained. And if we still can't get it together, then we got to be terminated. So that's— that was really what I wrote the book on. It's like 3 little books in one, and it's a pretty good read and a fast read, but it's, it's interesting. I hope, I hope people find it interesting.

I know they will. Here it is, folks, right here on my desk. And says, yeah, Disability Friendly: How to Move from Clueless to Inclusive. Great book.

Get this book, Joyce Bender. My wife, my wife Sam asked me, do you know you're calling people clueless in the title? And I said, well, some people are clueless, honey. I am sorry to say that, but there are clueless people, and I'm saying This book is for people who don't have a clue how to handle issues of disability that are presented to them every day. They may not even realize it, all the way to getting comfortable and being friends with and chums with and getting along. So they're inclusive.

Oh, they are. You are right. I'll never forget this businesswoman that came up to me after I spoke, and she wanted to ask me a question, and then she says, well, what Wait a minute. Wait. Are you okay right now? Because she didn't want me to have a seizure. I said, yes, I am. I am okay right now. But these are the— and then I've had people say to me, oh, you have epilepsy? You don't look sick. And I always want to say, oh, where's that flashing E badge I wear? I mean, you're right. People say all kinds of things. They do. And so that's why they need to read this. And what you said about getting fired, everyone knows my big saying, paycheck's not pity. Good. Everyone with disabilities, equal treatment. They do a good job, they get moved up. They don't do a good job, they don't have a job. That is how it must be. So one last question. Well, I don't have to ask you this question. Who is your role model? We already know it's your father from everything you said before. But John, as you well know, disability advocacy has changed. You know, remember, I mean, when you and I were in the movement, how there was Justin and all of these people. But I wanted to ask you about one in particular, Paul Hearn.

Oh, I love Paul. Oh my gosh, it almost brings tears to my eyes. He and I were as close of buddies as anybody, you know. It's like my, my best friend, my very best friend. And We would hang out 4 or 5 times a week in Washington, D.C., after work or on weekends. Sometimes we would travel to various places. We did— I was counting them up— 30 trips to various cities. Wow. For fun. For fun. It wasn't necessarily that he had a speech or I had a speech to give. We just would go and, and we went everywhere. Santa Fe, New Mexico. Love it. Miami, Chicago. We, we, we loved it. But Paul Hearne, a guy with spina bifida, a fellow with, and I'm sorry, osteogenesis imperfecta, OI. And he was a short guy, a small guy, and used a power chair and a manual chair at various times. Brilliant, became a lawyer. Had trouble finding a job because law firms wouldn't hire him. So he started a public interest and joined a public interest law firm— sorry— in New York City and really, really was so insightful of people and policy. He understood how he could talk to somebody and they would forget he had a disability. They'd get so enraptured with his personality and his style and his sassiness and his fun. And he knew maybe 2,000 jokes, and he had them categorized in his mind by— man walks into a bar, you know, on and on and on. Blind guy goes there. He just had jokes, and he entertained everybody. But down deep in his soul, he wanted to help everybody have a better life. And this country misses a Paul Herren. I miss him terribly. And I'm so glad that AAPD— he and I dreamed up AAPD. ADD and American Association of People with Disabilities. And it took us 2 or 3 years to finally get it together. Peter Thomas, our mutual friend, was the attorney who incorporated it. And today, with Maria Town as the CEO, it is doing just great. So I, I just want to say thank you for raising Paul Hearne, but I put you in that same category as a, a dear friend. And the fact that you've done this show for 22 years says, says a lot about you are a credible and an incredible advocate and a friend. So congratulations and thank you. I love you.

I love you too. I do. I love you too. And I'm going to ask you, listening to the show, here's what you need to do now. Share it with someone. Share this show. Very easy to do. And you know, we're on YouTube. And you can share this show. And if you can only listen to it on demand, that's okay. Go to Spotify, Amazon, Apple, almost every social media platform. This show is on. John Kemp, my friend, thank you for being with us today.

Thank you very much, Joyce Bender.

Great honor. Here's the quote. Every show. There's a saying that if you are poor, you stand a higher chance of becoming disabled, and if you are disabled, you stand a higher chance of becoming and remaining poor, said the great John Kemp. And in the words of Mary Brooker, when you get up tomorrow, remember, Choose joy. You won't be disappointed. Talk to everyone 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.