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Seven takeaways from NCDJ’s interview with Tony Coelho, the primary author of the Americans with Disabilities Act

Disability rights advocate Tony Coelho speaks at a disability caucus event at this year's Democratic National Convention. (Lily Altavena/NCDJ)
Disability rights advocate Tony Coelho speaks at a disability council event at this year’s Democratic National Convention. (Lily Altavena/NCDJ)

Tony Coelho is a former congressman from California who is the primary author of the Americans with Disabilities Act of 1990, which sought to end discrimination against those with disabilities. He has advocated for disability rights for almost three decades. Coelho has served as a judge for the National Center on Disability and Journalism’s annual contest recognizing the best reporting on disability around the world.

1. Coelho has had epilepsy since he was a teenager. The stigma it carried dashed his dream of becoming a Catholic priest.

“(When) John F. Kennedy got assassinated, it really hit me really, really hard. … I decided that I wanted to devote my life to helping people and not become a lawyer and gave up my plans. And so at the end of my senior year, to the shock of my girlfriend of five years and my fraternity brothers, I decided I wanted to become a priest…”

“(But my family is) Portuguese and devout Catholics, and they believed, as part of the culture, that if I had epilepsy I was possessed by the devil. Because the Catholic church in 400 A.D. amended Canon law to say if you have epilepsy you’re possessed by the devil; you can’t be a Catholic priest. So the association between epilepsy and possession has been going on for hundreds of years, and it’s true in a lot of cultures.”

2. A young Coelho seeks a job … and a purpose

“(In college) I was student body president and had great grades, and I had all of these job (prospects after graduating). But when I filled out the job applications, I never got a call back because on every application, was the word epilepsy, and I marked it…”

“I finally got a job at a liquor store selling liquor, and little old ladies on social security would come in and get their half-pint of liquor, and I just couldn’t take it. I quit, but I couldn’t get another job, so I started really entering depression, feeling sorry for myself and I started drinking a lot. I would go to a hill in Griffith Park, which is a big park in Los Angeles, and I’d go to this hill and I’d get drunk every day by 2 o’clock on this hilltop. I became suicidal, and on the one day where I was really in bad shape … I heard a voice. … There was a merry-go-round, which I had never seen before. I turned around, the merry-go-round was there, music playing, little kids getting off and on the merry-go-round (and) the voice said to me, ‘You’ll be just like those little kids. You’re never going to let anybody or anything ever stop you from doing what you want to do.’ I was very relieved. I’ve never been depressed again. I’ve never been suicidal again. I drink, but I don’t drink to comfort my sorrows.”

3. Comedian Bob Hope, whom he met through a friend, changes the course of his life.

“I got to be very close with Mr. Hope, and he said — one day we were in a car traveling — and he says, ‘Look, you know what your problem is? You feel you have a ministry, and you think a ministry can only be practiced in a church. A true ministry is practiced in sports, entertainment, in business, in government. And where you belong is in politics, not government. You belong in politics; that’s where you belong.’ I had never thought about it. I wrote a letter to my congressman, who I didn’t know, and got a staff job and worked for my congressman for about 14 years (eventually being promoted to chief of staff). Bob Hope … he’s the one who guided me into my future…

It (politics) became my ministry. I loved to have an impact. And so when (the congressman) retired, he wanted me to take his place. I ran, got elected and decided that’s what I wanted to do. … I was committed to making a difference in that district.”

4. After getting elected to Congress, Coelho makes disability policy a priority.

“My passion was going to be disabilities — and primarily epilepsy. And what I thought of is that with all I’ve been through. I wanted to make sure that other young people didn’t have to go through (the same). So what I would do is, I would amend a housing bill or I would amend a transportation bill (to try to help people with disabilities). But then I realized that wasn’t really doing any good because the real issue was that those of us with disabilities didn’t have our basic civil rights. We had no right to sue anybody, to challenge anybody who discriminated against us. If you went to a restaurant and you were sight-impaired, couldn’t read the menu, and you asked for help, they had a right legally to kick you out with no recourse. If you went to a movie theater and you were in a wheelchair, they had a right to kick you out legally because you could be a fire hazard. If you went for a job, an interview, and they knew that you had a disability they could see or suspect, they had a right to openly deny you employment and say it was because of your disability. So that’s when I started thinking of the ADA (the Americans with Disabilities Act).”

5. Coelho believes the 2016 presidential election could be a turning point for Americans with disabilities.

“For us (Americans with disabilities), this is a critical, critical election. Obamacare provides a requirement that the insurance companies can’t consider pre-existing conditions. That’s a huge issue for people like me, with my epilepsy, and millions of others with disabilities who were denied insurance because of their pre-existing conditions. And now that’s illegal. … We’ve made great advancements in disabilities, and this could all be reversed…

My biggest concern about (Republican presidential candidate Donald) Trump is that he has brought hate back. Mocking the New York Times reporter. Making fun of the contributor on Fox News. Implying that Hillary, because she jerked back from the microphone, was having seizures. He has, in effect, said it’s OK to make fun of those of us with disabilities…

When Hillary had her convention, every night the speakers talked about disabilities. Bill Clinton, (Barack) Obama, Michelle (Obama), (Joe) Biden — all talked about disabilities, in every one of their speeches. In the past, if disabilities were mentioned once at a speech in a convention, we’d get all excited. If we got mentioned once in the platform, we were excited. And it was generally a milk-toast thing about protecting people with disabilities. This platform had us mentioned 35 times in 19 different sections. It’s unheard of.”

6. Building a political movement for people with disabilities goes beyond this year’s presidential election.

“We’re a huge community and we’ve been ignored politically and, as a result of being ignored, we’ve not had the political influence in order to argue our cases in regard to legislation, regulations and so forth. And so, all of a sudden, this year we have gotten together money, participated in policy development, participated in social media, gotten aggressively involved in every aspect of the presidential campaign. So my whole goal in trying to get this started is to get us at the table politically. … And I also feel that because we’ve been so engaged, so involved, disabilities are front-and-center every day now, that people running for governor, running for Senate, running for the presidency next time around will all talk about disabilities.

(Coelho serves on the board of RespectAbility, a disability advocacy organization that queried the 2016 presidential candidates on their positions on disability.)

“RespectAbility had its questionnaire sent out to presidential candidates … and the response from both parties has been tremendous. Everybody feels they have to fill it out. That’s a huge change. Four years ago, they would have ignored it. But because we’ve come into the political game and we have credibility in the political game, the press is paying attention. I would like to see the press acknowledge just the impact that the disability community can have.”

7. Coelho’s goal is to make people look at disability differently.

“What I went through as a youngster — that scar tissue is still there. It is a passion with me to try to help others who have disabilities to not be mistreated — to be given the opportunity to go with their God-given abilities as opposed to people looking at their disability and in effect dissing them because of it…

All my life, I’ve devoted at least 50 to 60 percent of my time trying to make a difference in the lives of those with disabilities. And I feel very blessed, and I thank God for my epilepsy because it made me kind of who I am and (showed me) how I could make a difference.”