On July 16, 2015, Janni Lehrer-Stein interviewed Tony Coelho with the StoryCorps app for the Disability Visibility Project. Below are some condensed excerpts from their conversation. To listen to the entire interview (captions unavailable): https://storycorps.me/interviews/interview-with-tony-coelho-and-janni-lehrer-stein/
On becoming disabled and the stigma of epilepsy
Tony: I was 16 years old and I had an automobile accident. I hit my head on the windshield of a pick-up truck. I lived on a dairy farm and I flipped over in the canal. When I got out, I had a sore head… I didn’t think there was anything wrong. My dad got upset because I totaled the pickup but nothing happened for about a year.
A year later I was in a barn milking cows and I all of a sudden woke up and I was in bed in the house and the doctor was sitting on me. I couldn’t speak, I could hear and I didn’t know what happened. The doctors said, it’s all right, it’s alright, calm down. After it was over they said you had some type of spell but we’re not sure what it is. We’ll do some more work and find out what’s going on. I then went to several doctors. That particular doctor told my family it was epilepsy but my family wouldn’t tell me. I then went to two or three different doctors. They basically concluded the same thing and told my family but not me.
At that point I was about 17. They didn’t tell me, I didn’t know this until many years later, because they’re Portuguese and very Catholic. With their culture if you have epilepsy and you have seizures, you’re possessed by the devil and that God is trying to punish your family for something that somebody in the family did something wrong. My parent’s point of view is they were concerned about me but they were also concerned about themselves that if they had a child that was having seizures that meant that somebody did something wrong and that God was punishing our family. It wasn’t me that God was punishing, He was punishing me because of the family. My parents reacted to this. When the doctors all kept saying epilepsy then they took me to witch doctors. I went through three different witch doctors. Finally at the end it was a scary little thing because you would go into this room and they would turn off all the lights and put chains on the windows and burn candles, I didn’t have any trouble with that. It’s not the thing that as a 17 year old I was interested in so for the third one I finally said, “No. I don’t want to go anymore”. My mother was very upset with me. I said, “I just don’t believe and I’m not going to participate in this stuff.”
At that point I was in my senior year and I was student body president, class president, and very active. I was very close to my high school superintendent. I’d not been told about my epilepsy, just that I had passing out spells. My high school superintendent says to me, “You’ve got to get yourself out of town. You’ve got to get yourself away from this small rural community. You’ve got to get yourself out of town and you’ve got to go to Los Angeles, or someplace like that. Get away.” He pushed me hard. I kept having seizures not knowing they were seizures. I went to Loyola Marymount University. I continued to have my seizures but didn’t go to doctors or anything because I thought they were “normal”.
Then Kennedy got assassinated and I decided that I wanted to give up my life to public service of some kind…. In that whole decision making process I decided I wanted to become a Catholic priest… I decided to be a priest, sworn in by the president. It was a big thing. Everybody’s all excited and they announced it at the graduation ceremonies. Then I go to get my physical. The doctor says to me, “Have you ever had any passing out spells or headaches or something?” I said, “Yes, all the time for the past five years.” The doctor asked, “Has anyone ever told you you have epilepsy?” I said, “No, I don’t even know what the word is.” He explained to me what epilepsy was and he says you have it. I was thrilled because now I knew what I had, what was going on when I was having these spells. He gave me medication.
I called my parents and said, “I’m excited! I know what my problem is”. My mother’s response to me was, “No son of ours is going to have epilepsy. You are down there with a bunch of crazy people.” Immediately I knew there was problems with my family on epilepsy. I just said no. I struggled for a period of time. Got kicked out of seminary. My family rejected me when I was 20. I couldn’t get a job. I had all kinds of job offers because I was student body president but I couldn’t get a job with any of those people. I started drinking. I was drunk by noon everyday… I was on this hill and drinking everyday. One day I heard music. It was merry-go-round music. I had never heard it before. It was always there but I hadn’t heard it before…I looked at these kids and they were laughing and joyful. At that very moment something struck me. I said you’re going to be just like little kids. “You’re never going to amount to anything. Stop here.” I never plotted suicide since then. I’ve never let anybody get in my way of what I believe and myself and that’s what it’s all about. That experience became the reason why I got so involved in the disability program. With that experience and my family and the discrimination that took place, my church, and everything else.
On the global impact of the Americans with Disabilities Act and the UN Disabilities Treaty (a.k.a. Convention on the Rights of Persons with Disabilities)
Janni: With this incredible population around the world. Some people estimate that it is a billion strong of people with disabilities around the world and the incredible potential that is being offered through the International Disabilities Treaty and the ability to spread the spirit and the letter of the Americans with Disabilities Act around the world. What message do you have now to the American public and to our government in terms of how we can best make progress on this treaty?
Tony: We export a lot of things. We export some good things and some bad things. One of the things we’ve exported is our passion on disabilities and our leadership on disabilities. We’ve got the world in regards to recognition of what we as a disabled community can bring to the table. We’ve done that aggressively and openly… ADA was extremely humble to making other countries realize that we were really committed to making a difference.
When we then had to redo the ADA in regards to the Supreme Court decision, everybody realized that we as a government, we as a country, we as a people were committed to encourage people to participate and to provide the access and the opportunity for the people to participate. When we first offered the treaty and it came to within two votes of getting it. That was a very … I didn’t know what to do. I didn’t know if I should break down and cry. It was a very, very emotional negative thing for me. Bob Dole was on the house floor, great friend, and it was devastating to him. Basically, it was a slap in his face that the republican senators would vote against him. To me, I’m not a republican so I didn’t have that particular impact. I just was furious that Bob Dole would be insulted, that we as a community would be insulted. That it would do such damage to our reputation of a country and our commitment to people with disabilities. It has had a negative impact… I think the symbolism of that and our ability to help people that really need help in all parts of the world and we’re not willing to stand up and say so, it’s really one of the saddest moments I’ve had in my whole disability work. I think that we as Americans have got to tell the Senate that we want to do it and we have to understand as disabled Americans that we have a government that enforces more so now than we’ve ever had. There are people all over the world who don’t have those and they’re women, children who suffer tremendously because they don’t have any protection and we ignore them. It really disturbs me tremendously.
Janni: One future goal, then, for the disability community in America, the general community and something we can impress on our government is the need to ratify the International Disabilities Treaty and all those positive reasons that you’ve spoken about to do so.
Tony: Yeah. It doesn’t cost us any money. That isn’t what it’s all about. It’s aspiration, basically if we sign it we’re basically signalling to the rest of the world that we really are committing to it. We’re willing to help and everybody around the world in regards to it. Right now, because we haven’t signed the treaty, we can’t be in official delegations in the UN in regards to spreading the word on disabilities. It’s really a huge negative. We do need to get our people committed. What we really need is people of the disability community in the United States or wherever we are to aggressively go after our elected officials and say we want this. We want to make a difference not just the United States.
From Bender Consulting:
In 1978, Tony Coelho was elected to the U.S. House of Representatives from California’s Central Valley. He advanced quickly through the House Leadership ranks and served as Chairperson of the Democratic Congressional Campaign Committee from 1981 through 1986. Later Coelho became the first-ever elected Majority Whip from 1987 to 1989. As Majority Whip, Coelho secured the votes needed to pass the Democratic legislative agenda.
Mr. Coelho authored the Americans with Disabilities Act (ADA) during his time in the House of Representatives. This legislation provides people with disabilities equal access to employment, public facilities, and transportation and makes it possible for them to become a full participating member of society. The ADA is considered the most important piece of civil rights legislation in the past 30 years. During his ten years in the House, Coelho also served on the Agriculture, Interior and Administration Committees.
In 1999, Mr. Coelho returned to politics when Vice President Al Gore asked him to join his campaign as the General Chairman. Mr. Coelho was instrumental in refocusing the campaign, including relocating its headquarters to Nashville, Tennessee. Mr. Coelho’s leadership helped Vice President Gore get the Democratic nomination while winning every state primary and caucus. In June of 2000, Mr. Coelho resigned his position due to health concerns, but he continues to be a valuable advisor to the Vice President.
After leaving Congress in 1989, Mr. Coelho joined Wertheim Schroder & Company, Inc., an investment banking firm in New York. He served as Managing Director from 1989 to 1995, and from 1990 to 1995 he also served as President and CEO of Wertheim Schroder Investment Services. In 1995, Mr. Coelho formed ETC w/ TCI, an education and training technology company in Washington, DC, where he served as Chairman and Chief Executive Officer until it was sold in late 1997.
Mr. Coelho’s former and current business affiliations include service on a number corporate boards. He served as chairman and a director of ICF Kaiser International, Inc., and a director of AutoLend Group; Kaleidoscope Network, Inc.; LoanNet, LLC; and Pinnacle Global Group, Inc. He currently serves on the boards of Cadiz, Inc.; Cyberonics Inc.; DeFrancesco & Sons, Inc.; Kistler Aerospace Corporation; Ripplewood Holdings, LLC; and Service Corporation International. He also serves on the International Advisory Board of Fleishman Hillard, Inc. Today, Coelho serves on the Business Advisory Board of Bender Consulting Services, Inc. (Bender Consulting ). Bender Consulting is a firm that provides technology consulting services to its customers, and competitive employment opportunities for individuals with disabilities who are trained in the technology, finance/accounting and general business fields.
In addition to his work in the private sector, Mr. Coelho continues to devote much of his time to public service. He has served as Chairman of the President’s Committee on Employment of People with Disabilities from 1994 -2000. In 1995, he was a member of the Presidential Commission on the Roles and Capabilities of the United States Intelligence Community. In 1998, he was appointed as Vice Chair to the Presidential Task Force on Employment of Adults with Disabilities and as Co-Chair to the U.S. Census Monitoring Board. Mr. Coelho was also the U.S. Commissioner General to the 1998 World Exposition in Lisbon, Portugal.
In January 2004, Tony Coelho was elected to the Board of Directors of the American Board of Registration of Electroencephalographic and Evoked Potential Technologists. ABRET is a not-for-profit credentialing board for EEG, EP and Neurophysiologic Intraoperative Monitoring Technologists, and has been serving the neurology community and patients for more than 40 years. In addition to epilepsy, EEG and EP Technologists provide test data on disorders and conditions such as stroke, head trauma, infections and congenital defects.
A native of California, Mr. Coelho earned a Bachelor of Arts degree in Political Science in 1964 from Loyola Marymount University, where he served as Student Body President during his senior year. He began his career in 1965 as a Legislative Assistant to Congressman Bernie Sisk and served as Mr. Sisk’s Chief of Staff from 1971 to 1977 before being elected to the House upon Mr. Sisk’s retirement.
Janice ‘Janni’ Lehrer-Stein is a member of the Board of Directors of Medical Research Charities — a national federation of research focused non-profits, which solicits and directs employee donations to the Combined Federal and State Campaigns. She is a National Trustee of the Foundation Fighting Blindness and was Chair of the 2010 and 2011 Dining in the Dark dinner in San Francisco, which increased awareness about people with blindness and low vision. A board member of Disability Rights Advocates, a non-profit law firm working to improve access and secure the civil rights of individuals with disabilities, Lehrer-Stein holds a Juris Doctor degree from University of Toronto and a Bachelor of Arts degree from Yale. She was diagnosed with retinitis pigmentosa in 1982 and is legally blind. In her personal capacity she is involved with the DNC and Ready for Hillary!
For an interview with Janni Lehrer-Stein by Alice Wong for the Disability Visibility Project: http://disabilityvisibilityproject.com/2014/11/21/disability-visibility-project-janni-lehrer-stein-san-francisco-ca/