Title:
The Future We Choose: Tony Coelho, the ADA, and America’s Next Chapter

Subtitle:
A Living Lesson from the ADA’s Principal Author

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.

Let’s go.

Welcome back to Pushing Forward with Alycia. I am Alycia and I am honored today to welcome the Honorable Tony Coelhoretired US Congressman from California, Democratic Congressional Campaign Committee Chairman, and you’re not gonna believe this people, the principal author of the landmark Americans with Disabilities Act. Yep. I said it. The principal author.

Wow. We are making history today. It’s incredible. Tony has literally spent his life championing the rights, opportunities, and inclusion of people with disabilities. He calls this work his ministry, and the disabled community knows him as the voice and the champion for so many legislation and opportunity that we enjoyed today.

His legacy continues with the Tony Coelho Center of Disability Law, Policy and Innovation at Loyola Marymount University. And it has been my privilege to bump into him in the elevator at an event that he received an award. The Impact Award at WAWABILITY 2025. You’re just a powerful, amazing, influential person in our movement, and I’ve been doing a lot of homework on just past videos and your advocacy within legislation and law, building up to the ADA And I watched this video in 1988, and it was from the Joint House Senate hearing on discrimination on the basis of disability, and you had this quote that I wrote down that I wanted to start the show with. “It is time for our government to recognize our abilities and give us the dignity to do what we can.”

And that is the heartbeat of the A DA. It’s a heartbeat of this movement. Tony, thank you so much for giving me time and space today. It’s my honor to meet you. Welcome to the show.

Hon. Tony Coelho: Thank you, Alycia. Appreciate it very much being on your program. Look forward to our discussion.

Alycia Anderson: Me too. I have so many questions. You call the Disability Rights Movement your ministry.

What do you mean by that? What does it mean to you personally and even on a spiritual level?

Hon. Tony Coelho: When I was 16, I had my first seizure. I was in a dairy barn milking cows for the family. I woke up and I was in the house, in the bed. And my brother had carried me from the barn to the house, and my parents were there and a doctor was there, and they checked me out and then they talked and he told them that he thought that I had epilepsy.

I had just had a seizure. My parents being Portuguese and Catholic culturally felt that if you had epilepsy, it meant that you’re possessed by the devil.

Now. I always say at this point, Alycia, that my republican friends know I’m possessed. But to have your family feel that it’s a little different. So what happened is during a period of my life, I grew more and more removed from my family. When my mother died and the body’s going into the ground, a voice came over me and said, “You gotta decide if you love her or respect her. It can’t be both.” And, because of all she put me through I didn’t respect her. She was my mother and she did a lot of things out of love, not to hurt me, but I did develop scar tissue. But she did it out of love, not out of hate or vindictiveness or anything else.

So once I said that, I immediately had a grand mal seizure right there in the cemetery. I tell you that story only for you to understand, and you do, is just how impactful things can happen to you, as someone with a disability, when people don’t really understand who we are, what we can do, and so forth. So my whole passion, after I went to college, I decided, instead of being a trial lawyer, I wanted to be a Catholic priest. I then, go to my medical exam and the doctor says, “You ever heard the word epilepsy?” I said, no. He says, “Lemme give you some good news and bad news. The good news is your 4-F, which militarily means you can’t serve in the military, and the bad news is Canon law established, amended in 400 AD by the Catholic church, said that if epilepsy or possessed by the devil, you can’t be a priest.” So, I was rejected, but I left there feeling good because, all of a sudden, I knew what these passing-out spells were. So I knew I wasn’t possessed, that it was passing-out spells, which meant it was epilepsy. And so I could take medication, wouldn’t cure it, but it would help me with the degree of the seizure and so forth. But just knowing what it is important, and so I was excited. I left the doctor’s office, called my parents and said, ” have an answer. Doctor says I have epilepsy.” Without hesitation, my mother said, ” Son of ours has epilepsy. What I didn’t know is that in certain cultures, God punishes a family for some major sin that some family member committed. And that having these seizures is basically telling folks that this family screwed up somewhere. And so I didn’t have an appreciation of any of that, but, culturally, I could understand as devout Catholics, what they were probably going through. Didn’t make me feel any better, but now I understand that. But then, what happens is that, I go back to the fraternity house and now I’ve got all kinds of job offers ’cause I was student body president. I start calling, and then I get the application to fill it out. On every application in those days, 1964, had the word epilepsy, so I checked it. I never got an interview. I got lots of offers, but I never got an interview. So all of a sudden, I realized that God had turned against me. My church had turned against me. My family had turned against me, I couldn’t get a job. And I’m an A-1 personality, and that was devastating to me. So, I started drinking, I was drunk by two or three o’clock in the afternoon, on a mountain top, Griffith Park in Los Angeles. Now, there are no mountains there, there are hills, but if you’re drunk, it’s a mountain. And the day that I’m gonna do the dirty deed and commit suicide, all of a sudden, on this bottom of this hill, is a merry-go-round. And all of a sudden, a voice came over me, and I can hear it today. Said, “You’re gonna be just like those little kids getting on and off that merry-go-round. You’re never gonna let anybody or anything stop you from doing what you want to do.” Whoa. I got my mojo back. I’ve never been depressed since. I drink, but I don’t get drunk. All of a sudden, I was ready to go again. In two weeks, a priest friend of mine got me an opportunity to live with Bob Hope and his family, and I lived with him for a year. It was a tremendous experience for somebody from a poor family and who’d watched the Bob Hope Christ hour and everything else.

All of a sudden, I’m living with he and his family. He’s the one who’s said, after many talks, he’s the one who said, “Look at me, you think you have a ministry and only can be practiced in a church and you’re struggling. A true ministry, respected in sports, entertainment, business, government, but you belong in politics. Alycia, I never had thought of that. But all of a sudden, I wrote a letter to my congressman, who I didn’t know. I got the job. I was a staffer for 13 years. He decided to retire. I ran and took his place. And when I was working for him, I realized I couldn’t suggest amendments to help people with disability and housing, transportation, whatever.

‘Cause we didn’t have our civil rights. So when I got elected, then that was the thing I started worrying about working on, helping with. And I worked with the Reagan administration to begin with, put together legislation. That hearing that you talked about was my legislation before Ted Kennedy’s committee. We put that in, and then the next year, we worked with grassroots, and so forth, and came up with the other piece of legislation that we then moved through the Congress.

Alycia Anderson: Wow. I’m a little bit, there’s so much to unpack there, because I think a lot of us with disabilities, especially growing up in our youth. I know for me too, I come from a Catholic family. There was people in my family that said, “Wow, you must have done something really bad in your past life.”

Hon. Tony Coelho: Right.

Alycia Anderson: Yeah. And I’m connecting with you because I was born in the seventies, before ADA. So there’s a lot of similarities of just my youth, with your youth in the depression, and then having aha moments and claiming it as power instead of the bias.

I have chills. That whole story was so incredible. Wow. And then the part that I think is so amazing about you, there’s a lot that’s so amazing about you. But as I was studying you, what really inspired me was your advocacy during this time when advocating, public self-identifying with disabilities during an era that it wasn’t accepted, that it was looked at as taboo more than ever.

That it was looked at as being possessed. And you still showed up with strength and power to advocate for us. It’s beautiful. How was that during that time?

Hon. Tony Coelho: I’m very spiritual, and so I believe when I got my power that was part of it.

And I’m not afraid to talk to anybody. I’ve talked to every president about disabilities. I can tell you a story about my conversation with the Pope about epilepsy, and so forth. And so I’m not afraid to be rejected, but the only way I can force acceptance is to go after it, and educate and push and so forth. And eventually, you can get there if you’re willing to suffer the arrows that come your way. And I’ve gotten a lot of them over the years, but I don’t worry about it. I just feel strongly committed, and it is my ministry. I say all the time that, when I was in the Congress, and I was the whip, my job was to count the votes, right? I just needed to get 218. But that’s a lot to get. My staff would call the chair that was next to my desk, the confessional. And the reason they did is that members of Congress would come in and they would tell me personal stories, political stories, whatever, about their life, and so on and so forth and I would help them. Now I did that with my collar, right? That’s the role that I played there. And I still do my collar a lot because I feel if you can help out a single individual, you’re doing God’s work. So it’s important to help whenever you can. So those folks that I helped, when I needed a vote, I’d go to ’em and say, “Hey, Alycia, I need your vote on this bill, and so forth.”

And, nine out 10 times, they would give it to me. So that whole time I was the whip, we never lost an amendment, or a vote, or a rule on the house floor. And I counted it, my whole group counted them to the nth degree. Some of ’em we won only by one vote, but we pushed hard to get that. But that is my ministry.

I feel strongly like I’m 83. I feel as strong today, when I was 25 and started pushing.

Alycia Anderson: Wow.

Hon. Tony Coelho: And I feel it’s critically important to make a difference. Now, some people tell me, “Tony, you’re 83. Why don’t you slow down?” I don’t feel like slowing down. I still think there’s a lot to be done and I keep at it all the time. And that’s exciting to me. Now, lemme tell you the Pope story real quickly.

Alycia Anderson: Oh, please.

Hon. Tony Coelho: So I am now in the Congress, I’m whip so I’m the third highest ranking person in Congress. And so I get to take a trip and take a group of members with me, so a CODEL they call it, and so we get to go to three different countries. The first country I want to go to is Portugal. I’m Portuguese, so it would be red carpet, state dinner, all that other stuff. But it’s my ancestry, and so I wanted to go there. I hadn’t been there before. Second, the State Department got to pick the second country was Morocco. And I’d meet with a king, about some issues that he was working on with the Portuguese government, in regards to the Middle East. So I did that. There’s another story there, which is interesting, but then the third leg was to meet with a Pope. And so we fly into the Vatican. It’s a different country. As we fly into the Vatican, we’re in the room.

The door opens. Pope John Paul II walks in. We stand up. He goes to the chair, sits down. Everybody sits down, and I go to the podium. My whole view is that whenever you have a captive audience, its a podium. So it can be nothing at all. It can be steel, it can be wood, it can be whatever. But if you have control of an audience, that’s your podium. And so, I got up and I read the very boring pre-approved speech by the State Department, my office, and the Vatican. I read it, and when I got through, I said, “Your Holiness, I cannot live with myself if I didn’t tell you something personal.” And his minions around the room, you could hear it’s a violation. You’re not supposed to do that. My delegation looked at me as I was crazy. So I said, “As a young man, I decided I wanted to become a Catholic priest. However, when it was determined that I had epilepsy, canon law, established in 400 AD, said that if the epilepsy or possessed by the devil, you can’t be a priest. I think that is very un-Christian of our church, and I wish you’d look into it.” And I sat down. He then gives the very boring, pre-approved speech from his side. Then we do a lot of photographs, and so on. We got lots of them. And, then he gets ready to leave. He takes my wife’s hand and walks her to the door.

I’m walking with him, gets to the door. He turns to her and blesses her. He turns to me and does not bless me. And as a Catholic, if a Pope doesn’t bless you, you got trouble. And so, he doesn’t bless me. Then he says to me, he said, “Young man, I heard your comments,” and t urned around and walked away. I never talked about this before because I was embarrassed he didn’t bless me. Two years later, I find out that Canon law was changed to permit people with epilepsy to become priests, men, I should say, to become priests. Now, I’m very clear. I don’t know if it was my comments to the Pope that did it. All I know is I did make the comments to the Pope. And I think that’s what’s important is that you’re willing to speak up about something you feel strongly about and not worry about who it is. And that, I think, symbolizes for you and for your listeners about the commitment. You’ve gotta be committed. You can’t let a pope, or president, or so forth stop you from pushing to get something done.

Alycia Anderson: Wow. That is an incredible story, and I absolutely believe that you had a heavy hand in that. And that just shows how change can be made. That’s incredible. And the social capital, the equity, the trust that you’re building among the people around you in these stories. Your relationship building is incredible too.

I’m absolutely blown away. I am. I’m literally blown away. This is incredible. Can we talk about the ADA for a minute? We just celebrated the 35th anniversary of the ADA. Congratulations. Can we talk about the beginning of the crafting of that, your inspiration, your vision, and just the path?

Can you just give us a little look back on that, what your journey was like?

Hon. Tony Coelho: Sure. I met with President Reagan’s disability consult, the chair and the vice chair, both women.The vice chair, I was very close to her father, and both of them have a child with a disability. And so, they were very concerned about developing something. And I teamed up with them to go ahead and develop some legislation that staff prepared, which you would think staff prepared.

And we then put it in. And Senator Weicker from Connecticut was the Republican, and I believe that it should be the House and Senate, Democrat, Republican, so that it’s bipartisan, bicameral, and so forth. So we put it in. The interesting thing that happened is that you send out a dear colleague letter and saying, “I’m introducing X, and I appreciate your support, blah, blah, blah.”

We called it robo letter in those days, but it just a form letter that goes out to everybody, and you get some responses. I’d go on the House floor. I’d have people come up to me and say, “Tony, I read your letter. I want to co-sponsor your bill with you. I don’t like the way my wife, my father, my mother, my brother, my next door neighbor is treated because of their disability, and I want to work with you to do something about it.” Now, they never read the letter really that much. They didn’t know anything about the bill. All they knew is that we, in the disability community, were being mistreated. That we didn’t get the rights everybody else had, and they wanna be part of it. So when I introduced that first bill, we had something like 150 different people. And Democrats, Republicans, liberal, conservatives, didn’t make any difference. Everybody was concerned. We then finished that Congress, then you have to reintroduce it to the next Congress. And in that time, then I found out that there was this whole grassroots effort, and I had that testimony that you were talking about at the end of the first Congress. But then I found out that this grassroots effort was taking place. Justin Dart, a Republican and a chair from Texas, wonderful human being. And he would been going around the country and developing support. And so, from January, instead of putting in a bill, I put it in October. So from October through June, we worked on legislation. We didn’t put it back in, in January, when the new Congress started. We tried to work together, and so forth.

Worked with the White House. It was President George H.W. Bush, and he had a daughter with a disability, who died at a young age. So, he and Barbara were very committed to what I was working on. And, then in the Senate, you had Bob Dole, wounded veteran with a disability. You had Ted Kennedy, probably the most dominant Democrat in the Congress.

He had a son, and a sister, and so forth, all with disabilities. You had Tom Harkin, who had a brother with hearing impaired, and then you had Orrin Hatch, a very conservative Republican from Utah, who was a Mormon. And at that hearing that you saw, Ted turned to him and said, “Why don’t you go ahead and question Tony.” And his comments to me, he said, ” Congressman, I just want you to know that in my church, we consider you a child of God. I will do anything you want to help you get this through. And he did. He’s a conservative Republican. He was part of the whole effort and so on. And so then, we put it in and we got it through quickly. It was unusual. The most significant civil rights bill in the last 40 years. But we got it through. It was tough to get it through the house. There was opposition. Greyhound Bus was the most aggressive one, saying they can’t put people on in their bus that are in wheelchairs or whatever. And my position with him, I said, “Look it. When this becomes law, you’re gonna get people developing a technology where your bus can dance and swing and sway and everything.” And so now, the buses bow down to pick up somebody in a wheelchair. But we gave them, I can’t remember Alycia for sure, but it was 15 years or something like that, to develop the technology that they did not have, to comply with the ADA for that period of time while the technology was developed. So we got it through the House and the Senate after a lot of work. And Steny Hoyer of Maryland deserves credit to get it through the House. And on the Senate side, you had those four individuals I talked about. The combination there is tremendous. So we got it through there. Tom Harkin played a big roll in ushering that through the Senate. And then of course, the President signs it on the south lawn of the White House, and thousands of people with disabilities showed up on the lawn. It was hot, but we didn’t care. We had people passing-out, and we’d give them water and so forth, but we didn’t care. This was the most significant thing that happened to our community. So that was it. It was tough. It wasn’t easy, but the emotional impact of the potential of it was so great. People couldn’t stop us. And go back what you said earlier, I really was aggressive and self-identified. I felt very strongly that you had to get out there and say you had a disability.

Alycia Anderson: So basically, I take the view that you need to be proud of who you are. And I always say to people, with a disability, “First off, you gotta love yourself. You gotta look in a full-length mirror and said, ‘I love you.'” Now, if there’s something about you that you don’t like, you don’t like the color of your hair, change it. If you don’t like the color of your eyes, get contacts. You can change it. If you don’t like how fat you are, how skinny you You can work on that. If you don’t like how tall you are or how short you are, not much you can do there. But the point is, get to a point where you can say, I love you. And if you can do that, you’re powerful,

Yeah.

Hon. Tony Coelho: Because you then know that you’re right and you can push to make a difference. One time in the epilepsy community, somebody had a great, brilliant idea on the epilepsy board. That epilepsy is a negative word. We should change our name, instead of the National Epilepsy Foundation, we should change it to the national seizure foundation. I said, “No way.” I said, “You’re caving into the negatives when you change the word of who you are.” You keep pushing for the word, who you are.

That’s the way we break through. We don’t break through by giving in to prejudice. And so I stopped that. But that’s my attitude about things. Take what you have and make something out of it. And if you’re committed and willing to take the arrows, you can make a difference. One of my quotes that I love to give all the time, I know you ask for ’em at the end, but I’m gonna tell you now,

Alycia Anderson: Okay.

Hon. Tony Coelho: Is that, I believe this strongly. ” Give me the opportunity to fail, and if you do that, then I may be able to succeed.” And the reason is so many people won’t even give us that opportunity to fail.

Alycia Anderson: Yeah.

Hon. Tony Coelho: How do you know if I can do the job? You think because the way I look or whatever, I can’t do it. Give me an opportunity to fail, just like you would anybody else. I don’t believe that we have a right not to be fired. I believe we have an obligation to be fired if we can’t do the job, and that’s the message that I give to business all the time. I want you to give us a chance to succeed, but fire us if we don’t. I have no reservations about that.

Alycia Anderson: Amazing, and I totally agree with you. And that word epilepsy is like the same word with just disability and how people are constantly trying to reframe it. And I’m in the same mindset. Why? Can we just commit? This is who we are and be proud of it, and shift the narrative behind this word.

So I love that’s part of your advocacy too. And what a beautiful story of coming together, in our politics, in leadership from all different backgrounds, and everybody came together with personal stories of disability, which that is the thing of disability. It’s our common ground, not the thing that separates us. Even though our general society puts it in this other category when it really is not.

Hon. Tony Coelho: We talked about our disability. I’d like to say we talked about who we are.

It’s not a negative. We talk about who we are. Look it, I’ve had seizures for 65 years. Still have ’em. I have a seizure. That’s okay. I’m much better off than a lot of other people with disabilities, but I have a seizure. I don’t mind telling people I have a seizure. I don’t mind admitting having a seizure, because you know what? There are a lot of things I do better than other people.

There’s some things I can’t do. I can’t drive an ambulance. I can’t drive a police car, can’t carry a gun. I know all that stuff. I don’t care. But there’s some things that I can do much better than other people, able-bodied people. The other thing I would say when I talk about the ADA, and I’m so excited about talking about it, you can tell. But the other thing that I do when I talk about the ADA I said, “Look it, you’re you’re able-bodied, right? I just want you to know that the ADA is there for you. Because at some point in your life, you’re gonna have a disability, and this is a

Alycia Anderson: life

Hon. Tony Coelho: insurance policy for you to have.”

Alycia Anderson: It’s beautiful and it’s so true. And I say that all the time, on the many stages that I’m on, too, because I think that it’s just one part of our civil rights and history that so many people still don’t know.

Hon. Tony Coelho: But, I think that piece of our history isn’t taught enough, isn’t discussed enough, isn’t known enough in our country, as one of the most significant pieces of civil rights that’s ever literally been passed in our country. It’s so important, and it’s incredible the work that you’ve done.

Alycia Anderson: And you talk about bipartisanship, you talk about all of this being our common ground. How do we do better today? How do we do better? How do we advance this? Where do we need to go? What are we doing good? How do we bring lawmakers and politicians together in this movement today?

Hon. Tony Coelho: I think it’s important for those of us with disabilities to recognize that other communities have been through their struggles. People of color got their rights in the sixties. Women got their rights in the seventies. The gays got their rights in the nineties. But you look at all the communities that became part of this trial of ours called America. It’s exciting to be included in that family of America. So instead of worrying about the discrimination I went through, I’m just excited about what I can do now and what more I can do is I keep moving along. I’m President, I’m chairman of a bank in New York. I’m on several corporate boards. I do a lot of speaking and so forth. I have my own family business. It’s exciting, but I have seizures. Doesn’t stop me.

Alycia Anderson: Beautiful. What is your greatest hope for the future and the next chapter in the disability rights movement in our country?

Hon. Tony Coelho: There are two things. I’m very concerned about the Civil Rights Act being negated in some way by the Supreme Court or politically. The ADA would be impacted, and I think we’d be set back for years. So it’s my biggest concern today, that the political atmosphere is there to make some changes. I think it’s wrong. And I don’t think that people, in total, are in support of going back on civil rights and pulling back on the ADA, but it’s something that bothers me. It really troubles me and I’m very concerned about it. In regards to what is more important for us, that’s important obviously.

But what is important to us is jobs, more and jobs. The ADA does not require a job. The ADA says you can’t discriminate from employing somebody with a disability, but we don’t say you have to hire somebody or there’s a number that you have to have or whatever. But I got through with President Obama, an amendment to the federal contractors and subcontractors act that says that women, people of color, and the disabled have to be hired by these federal contractor. There was never a definition for disability. There was no numbers as where we lived or anything else, so I got all that done with a lot of people. I got all that done, and then went to Obama and convinced him to issue the rule. 434,000 people with disabilities were hired. And what it means is that, if you were pushing pencils, or water, or airplanes, or whatever to the federal government. That’s massive, as you can see what the federal government purchases. You then had to comply with the law, and as long as we have enforcement. Now, I’m gonna just dwell on that a minute. Whoever you support for President, make sure that you know that they’re gonna appoint an Attorney General, who then is gonna appoint somebody Head of the Civil Rights Division, who will enforce the law, in regards to civil rights, which means enforce the ADA. If it is not enforced, it’s just a piece of paper.

That’s one of my concerns, why I am so aggressive out there all the time, is to say that, “Look it, we have to make sure that the ADA is enforced. It’s the law, but if it’s not enforced, it makes no difference.”

That’s one of my biggest concerns as we move along, is not to have 35 years go to waste. I just feel strongly that there are generations, that were born in the last 35 years, that don’t know what it was like before 35 years.

And I don’t want them to have to experience it.

I want them to experience the progress that we’ve made.

Alycia Anderson: Me too. Thank you. I agree, and I think all of us as a disabled community right now, many of us, are very fearful of that too. And many of us, like you’re saying, don’t know a day without the ADAI remember those days. I wanna thank you personally for the freedoms that you have given, not only our country, but really the legislation that you created. And the work that you’ve done has been a guidepost for the world to follow, and what an incredible gift to our world. All the work that you’ve done in your ministry, your beautiful ministry of creating change, and opportunity, and equality, and all of those things for our community.

Hon. Tony Coelho: Let me just say one thing. The exciting thing about the ADA is that over 50 different countries have adopted their own ADA. So that means ADA now has impacted the world community, and people throughout the world recognize that those of us with disabilities have tremendous ability. And so that’s a wonderful export that we have made.

Alycia Anderson: A wonderful export and what a amazing and impactful life you’ve gifted our world. It’s so beautiful. I’m gonna ask you a Pushing Forward moment to just see if you have one more. I know you already said it, but maybe there’s a little gift you can give away once more to leave our community with your power and inspiration as they leave this episode today.

Hon. Tony Coelho: I would say to all of us in the disability community, not to be afraid to speak up to power. That is the only way we can make a difference. And all they can do is say no, but just think they might say yes, and that’s what’s important.

Alycia Anderson: Yes. I love it. Tony, it has been my pleasure. I will never forget meeting you as long as I live. Thank you so much for gracing this show with your amazing presence, and for all the work that you’ve done in our world. You’re an absolutely incredible man, and I’m so honored to know you now, and just thank you very much for your time today.

Hon. Tony Coelho: Thank you Alycia. I love you and appreciate all you do.

Alycia Anderson: I love you too. And this has been, let me wrap up real quick. This has been Pushing Forward with Alycia, and that is literally how Tony and I roll. We will see you next time.