By Judith O'Toole
EpilepsyUSA staff
Posted: June 17, 2002

The following article is the second in a two-part series. The first part appeared in the March/April 2002 issue of EpilepsyUSA.

When the Americans with Disabilities Act was enacted in 1990, Tony Coelho was there. He stood on the South Lawn of the White House and watched as President George H.W. Bush signed it into law. For Coelho, it was an emotional moment.

"I cried, because I knew what was happening," Coelho said. "I knew that no matter what happened from that point, people with disabilities would now at least have the right to go to court."

But more important to Coelho was the fact that the President of the United States was on the South Lawn of the White House publicly saying at a huge ceremony that people with disabilities had abilities and that those abilities needed to be recognized.

The signing of the ADA was also significant because it was the culmination of a very long effort by Coelho and many other people.

Coelho, who has had epilepsy since his late teens, was elected to the U.S. House of Representatives in 1978. It wasn't long before he emerged as a leader of his party. He served as Chairman of the Democratic Congressional Campaign Committee from 1981 to 1986 and then as Majority Whip in the House from 1987 to 1989.

He also served in senior positions on the Agriculture, Interior and Administration Committees during his years in Congress.

Public Service Always

"I knew that no matter what happened from that point, people with disabilities would now at least have the right to go to court."

Coelho left office in 1989 to pursue a career in business but has never stopped promoting awareness of epilepsy and the rights of people with disabilities.

That year, he joined the New York-based investment firm of Wertheim Schroder & Company, Inc. as a managing director. He was also appointed as president and chief executive officer of Wertheim Schroder Investment Services.

Public service has always been a top priority for Coelho and throughout the 90s, he continued his commitment to public service as an Epilepsy Foundation board member and is currently senior vice chair of the Foundation. In 1994, he was appointed by President Bill Clinton as Chairman of the President's Committee on Employment of People with Disabilities. Coelho became Vice Chair of the National Task Force on Employment of Adults with Disabilities in 1998.

It All Comes Back to the ADA

However, the most significant event in his legacy of contributions to public life was Coelho's authoring of the Americans with Disabilities Act, recognized as one of the most important pieces of civil rights legislation in the last 30 years. Despite some erosion due to court rulings, it retains its promise to this day.

"The Civil Rights Act was enacted in the 1960's," Coelho said. "Do we still have discrimination against people of color? Yes. The ADA was passed in 1990. Do we still have discrimination against people with disabilities? Yes. But are we better off? Yes, definitely better. Will we get better in the future? Yes. Will we have setbacks? Yes.

"But, we're in the process. We're not outsiders looking in. We're in the game. And we can participate and get involved and we can go to court and we can make issues."

Lives have been changed by the ADA - and not only the lives of people in the United States. About 15 countries have since adopted the law, or one very like it.

Coelho is the first to agree that the mere signing of a law doesn't guarantee change, but does offer opportunities. Some of those opportunities have been narrowed for people with epilepsy - an irony that is all too clear to the ADA's chief author.

"For the Supreme Court to say that the intent of Congress was such, did they ask anyone in Congress? They don't know what the intent of the Congress was; they're just interpreting it the way they want to. "

"I'm disgusted with what the Supreme Court has done recently," he acknowledged. "For the Supreme Court to say that the intent of the Congress was for people with epilepsy not to be covered by the ADA is despicable.

"Why would I write a law that in effect eliminates the very people who I represent and am part of? It's ridiculous. For the Supreme Court to say that the intent of Congress was such, did they ask anyone in Congress? They don't know what the intent of the Congress was; they're just interpreting it the way they want to."

Are the recent Supreme Court rulings a setback? Coelho said they are but doesn't think they'll be permanent. "We'll prevail. Because we're right and because I believe in our system so strongly that we'll get the law amended and reversed and we'll move on. But, it is a setback."

What People Think

"I think to a great extent, people with epilepsy are out of the closet," Coelho said. "Am I happy where we are? No.

"We have entertainers and comedians who make fun of us and that is very heartbreaking," he continued.

Coelho believes it's important for people with epilepsy and for the Epilepsy Foundation to keep up the fight for recognition and respect. "We have to let the public know that we feel strongly about epilepsy and don't think it's something to be made fun of," he said.

That's one of the reasons Coelho thinks 'NSYNC's participation in the Epilepsy Foundation's Epilepsy Month campaign last year was so important.

"Kids are our future. Kids are our greatest resource. Kids are our everything," he said. "Young people with epilepsy need to know that they can succeed at whatever they want to do if they have a real desire. That the American dream includes them."

But, Coelho added, it's also important to get young people who do not have epilepsy to understand what it is - and what it's not.

"The problem is, epilepsy isn't what they assume it is. The way to get teenagers to understand that is by using media they understand and 'NSYNC is a great vehicle to educate," he said.

Working with young people, he believes, takes time, but is a great investment. "Our money should be spent working on kids. Kids with epilepsy and kids in general about the perception of epilepsy," he said.

Perceptions Start With Us

Sen. Tom Harkin (D-Iowa) with Coelho

Coelho also thinks people with epilepsy can do a lot to improve people's attitudes about the disorder by not being negative.

"When you talk to people, don't be defensive, there's no reason to be. You are what you are," he said. "If you treat epilepsy negatively, you pass that on to the people you talk to.

"It's also important to be involved in helping others. I think the way we resolve our problems is to reach out and help other people with epilepsy or other disabilities," Coelho continued.

"Now, I've come to terms with my epilepsy, so this is easy for me to say. It wasn't always easy," he said. "But, it's easy for me now and that can be the case for everyone - you just have to come to terms with it."

The critical part, Coelho believes, is loving yourself and knowing who you are. And sometimes, it's a matter of finding strength in unexpected places.

"I have to say - and this might sound a little out there - the greatest gift God gave me was my epilepsy because, in effect, it forced me to know myself. It forced me to know what I was all about. I know myself and I deal with who I am," he said.

"Sometimes people say I'm arrogant about it," Coelho confided. "What I am, is very comfortable with who I am and very comfortable with what I believe in."

When Coelho speaks to young people, he always tells them to look into a mirror. "If you think you're too short, you can't do anything about it. But, if you don't like the color of your hair, you can change it," he says to them.

"But look at who you are and accept who you are. If there's something about you that you can change, change it. If there's something about you that you can't change, accept it.

"Once you find acceptance in yourself, it's wonderful. You have tremendous freedom and then you have tremendous ability to help others," Coelho said.

The former Congressman has spent much of his adult life helping people with

'Yes, I Can'

"Once you find acceptance in yourself, it's wonderful. You have tremendous freedom and then you have tremendous ability to help others. "Epilepsy. In addition to giving generously of his time, Coelho has been even more generous with financial contributions to the epilepsy movement.

In the late 1980s, his 'Yes, I Can' Foundation raised close to $1.5 million to fund Epilepsy Foundation programs. The money was earmarked for three major projects: expansion of employment programs; development of a program to help young people with epilepsy make a successful transition from high school to the workplace; and distribution of Kids on the Block puppet sets to Epilepsy Foundation affiliates for use in epilepsy education. In addition to these large donations, Coelho also made a $1 million gift to the University of California at Los Angeles Epilepsy Center to establish an epilepsy chair at the university.

In January, Coelho also endowed a chair in public policy at the University of California at Merced, in the community which he represented in Congress for many years.

"For our campus to have a faculty chair bearing the name of Tony Coelho is indeed a privilege," said UC Merced Chancellor Carol Tomlinson-Keasey. "He is a visionary leader whose work to promote education, disability awareness, agriculture and many other important issues has improved the lives of millions of Americans."

Passionate About Employment

Coelho is also active with Bender Consulting Services in Pittsburgh. The company hires people with disabilities, trains them and then places them with a company for six months. During that six-month period, Bender Consulting pays the individual. Then, after that initial six-month period, the company has the opportunity to hire the person.

Joyce Bender, who has epilepsy and is also a member of the Epilepsy Foundation board of directors, is the president of Bender Consulting Services.

"What she provides is a bridge," Coelho continued. "She takes an unemployed person, provides them training and then employs them. I love that."

Last summer, some of Bender's staff called Coelho and insisted he come to Pittsburgh for a company picnic.

"All I could think of was 'A picnic in Pittsburgh? I've got a lot of other things I could be doing,'" he admitted. "But, they insisted, so I went."

What he didn't know was that a young woman with epilepsy and cerebral palsy, whom he had met at a job fair in New Orleans, would be there. She had also met Joyce at the job fair. She was a college graduate and hadn't been able to find a job, so she went through the training program at Bender Consulting and wound up getting a job with Computer Sciences Corporation. With the young woman was a young man who was sight impaired. He had also been trained by Bender Consulting and was employed by CSC as well.

"So, they're at the picnic and they come up to me and tell me that they're dating. And of course I'm just thrilled to death since I know and like both of them," Coelho said. "And then the young lady tells me she's pregnant.

"And I said, in my typical, old-fashioned way, 'So when are you going to get married?' Fifteen minutes later Joyce comes up to me and shows me this small box and tells me to look inside," he continued. " So I open the box and there are two wedding bands inside. "The reason they wanted Joyce and me there was because they wanted to get married at this picnic. They wanted Joyce to be the matron of honor and me to be the best man at their wedding."

The wedding took place right there with everyone in their picnic clothes. All of the people involved with the Bender group were like family. And their example inspired others - including a Justice of the Peace.

After the ceremony, Coelho was talking with him. He told Coelho he never performed Saturday marriages.

"But, he told me that his secretary came into his office and told him he was doing this one and explained that both of the participants were disabled, told him the circumstances about how they met and he said yes," Coelho said.

As it turned out, the justice has a 16-year-old son who is disabled and he wanted to be able to go home and tell his son that he has an opportunity to meet somebody and to enjoy life just like everyone else.

The young couple now has a baby boy who has Coelho and Bender as godparents.

"To me, that's what it's all about. That's why it's so exciting," he said. "You have two people who couldn't get a job who now have a job, who are paying taxes, have a house and a child; and they have disabilities. This is no joke. They have serious problems, but they're positive about life."

Coelho is committed to Bender's organization because of its mission in helping people with disabilities become employed. And the Bender group has expressed its admiration by naming a special award in his honor.

Russ Owen, president of the Chemical Group of Computer Sciences Corporation has just received the first Tony Coelho Award from Bender Consulting Services because of his commitment to hire people with disabilities.

The award will be presented annually to a CEO, president, or government leader who has demonstrated a significant commitment to employ people with disabilities in competitive positions, and who has worked to influence other business and/or government leaders. The award honors Coelho's leadership in the area of promoting the civil rights of people with disabilities - just as the ADA was designed to do. To Coelho, it's all linked together.

"I love the ADA because it's created the opportunities for the Computer Sciences Corporation to do what they're doing," Coelho said. "Maybe at first they felt they had to, now they love it because the people they hire with disabilities turn out to be such great employees."

What's Next?

"Jobs are the great equalizer in our society," Coelho said.

"Without a job, it's hard to participate in the joys of life," he continued. "I think with a job that gives you the opportunity to fail, as well as succeed, people with disabilities will succeed because they want that job and they will be loyal to that job and to their employers."

Coelho also said he plans to spend more time with his family.

"I love my kids and love for them to have opportunities to do things," he continued. "And I want to provide them with the means to do as much as they want to do. If we have grandkids, I want to make sure they'll have the opportunity to do what they want to do." Both of his daughters are young adults now, having benefited over the years from their father's emphasis on the importance of public service and giving back to the community. "Now they're out there starting to make a difference in the world and I'm so proud of them," Coelho said.

"One of the reasons I felt so strongly about establishing a chair for public policy at the University of California at Merced is because I'm so committed to it," Coelho said, adding that it's essential for everyone in the country to "talk about issues facing our nation. "I still think I can make a difference. I can do it from a different pulpit," Coelho concluded. "I still have a podium, because I demand it. What I want to do is devote more time to making life better for people with disabilities."