|Vol. 20, No. 21||November 15, 1998|
Lex Frieden: "Champion for People with Disabilities"
by ROGER WIDMEYER
Texas Medical Center News
Lex Frieden is on a conference call. He is all business. Assembled via the telephone lines, the group is discussing a draft of a report. Add a sentence here, Frieden says. Strengthen the introduction. He adds some sentences to the conclusion.
Frieden and his colleagues are drafting a report to be delivered to President Clinton on Nov.15 regarding a national policy of employment for disabled people.
Lex Frieden, 49, has been active in legislation affecting disabled people for more than 20 years. He has been almost completely paralyzed for 31 years.
Frieden has just returned from Washington D.C., where he received the 1998 Henry B. Betts Award, an honor given to one person each year who has made contributions toward improving the quality of life for people with disabilities. The award carries a $50,000 non-restricted cash award with it. In nominating Lex Frieden for the award, former President George Bush wrote, "Throughout his life, Lex has been a champion for people with disabilities."
As the major architect of the Americans With Disabilities Act - passed in 1990 - Frieden may know more about the difficulties a person with disabilities faces than anyone else in America.
"There have been several important laws," says Frieden. "The Rehabilitation Act of 1973 was very important, and it's been amended and improved since then. The 1975 Education for Handicapped Children Act was critical because it meant that kids with disabilities would receive their education in 'normal' schools, integrated with the rest of their peers."
In 1967, Lex Frieden was an honor student looking forward to his first year of college at Oklahoma State University. But his dreams of college were shattered, just as his neck was, in an auto accident; he was a passenger in the car.
His father visited rehabilitation facilities in New York, Chicago, Los Angeles and Houston. "He said there was no choice, really: TIRR was the place for me," says Frieden. "Dr. Ed Carter was my doctor. He's still here." Following rehabilitation, Lex applied to a university in Oklahoma, an architecturally modern group of buildings. He was denied admission because of his wheelchair.
"I couldn't believe it," he recalls. "I had a 4.0 grade point, excellent test scores and recommendations. I spent several weeks in shock.
"It darn sure had an impact on the way I looked at life."
At another school, the University of Tulsa, the dean had a simple solution. "He said they would simply hold the classes I wanted to take in a new building which was accessible. No big deal. But it gave me the idea of 'reasonable accommodation,' a concept which we have incorporated into the Americans With Disabilities Act."
Back in Houston in 1972 to pursue a master's degree in social psychology at the University of Houston, Lex met Mac Brodie, a Vietnam veteran who had suffered a severe brain injury. "He was living in a halfway house but he was also volunteering at the assisted living dormitory in which I was living," says Frieden. "This was a dorm actually begun by a bunch of former TIRR patients who were now going to school, and Dr. Spencer encouraged us to hire assistants and arrange our own transportation.
"Anyway, Mac and I started a partnership - and friendship - that has benefited us both."
Mac lives with the Friedens - Lex, his wife, Joyce, and their grandson Trey. Joyce is paraplegic because of disease which struck her brain and spinal cord. Mac helps Lex with physical tasks, and Lex helps Mac compensate for deficits in his memory and ability to reason.
"We have 20 years of data that indicates 99 percent of people with disabilities would greatly prefer community living to institutional care," says Frieden. "No surprise there. What is surprising is that we continue to pour millions of dollars into nursing homes and institutions - when community living is cheaper and certainly provides a more independent feeling to that person."
Frieden describes a model of assisted living that is a kind of hybrid nursing home. The assisted living quarters are outfitted with adaptive devices, and a caregiver comes in two or three times a day for meals and to help with dressing. "We don't need physicians and nurses to help us pull up our pants," he says.
Frieden, now a senior vice president at TIRR and mastermind of TIRR's grants program, is also the founder and director of TIRR's Independent Living Research Utilization Program, a national center of research and training about independent living. "It is one of my missions to spread the word about independent living," he says.
Frieden was asked to come to Washington in 1984 to serve as executive director of the National Council on Disability, a 16-member board appointed by the President. "The council had been given an ultimatum by Congress: produce a report with meaningful recommendations, or pack your bags," says Frieden. Under his leadership, the council produced "Toward Independence," a landmark document which for the first time clearly articulated the needs of disabled people. "It was really hard work, partly due to the political environment in Washington, but we did produce some reports that were respected." The reports that came out of Frieden's four-year term as director of the National Council on Disability have influenced international standards on civil rights for people with disabilities and helped generate new policies at the Centers for Disease Control and Prevention (CDC) and the U.S. Department of Education.
Most importantly, Frieden's work produced the original draft of the Americans With Disabilities Act, the most important piece of legislation affecting people with disabilities. Essentially, the ADA is a civil rights law, guaranteeing people with disabilities rights to access, employment, and all the opportunities every American has.
"Look, a whole lot of people come out of rehabilitation programs," says Frieden, "but they are lost once they finish because the community they are going to lacks a support system for them. That's why I work so hard to focus public policy on two fronts: ensuring an opportunity to work and an opportunity to live independently. There are still too many employers who look at a disabled person and simply fail to see the qualifications of that person. In 1990, when the ADA was passed, 68 percent of people with disabilities were unemployed. Today, 68 percent are still unemployed. And there are still too many people who spend a lot of time and energy convincing the government that they are indeed disabled so they can collect benefits - and they come to see themselves as dependent.
"We - our community and our society - have to do better."
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