Personal challenges drive UT-Houston
independent living advocate Frieden
Lex Frieden
HOUSTON—(Dec. 10, 2007)—Back in the winter of 1967, in the scant seconds it takes a car accident to occur, the life of Lex Frieden, then a freshman at Oklahoma State University, changed forever. The impact of the head-on collision in which he was a passenger broke Frieden’s neck and injured his spinal cord, leaving him partial use of his arms and depriving him of any use of his lower body He now uses a wheelchair.
That was the catalyst for his career as a disability rights activist – including a critical role in the drafting of the landmark 1990 Americans with Disabilities Act (ADA), which has been likened to a Bill of Rights for the 54 million people with disabilities in the United States.
At a Dec. 4 presentation and reception, Frieden – a new faculty member at The University of Texas Health Science Center at Houston – was introduced to the university and its supporters by Jack Smith, M.D., Ph.D., dean and professor at the UT School of Health Information Sciences at Houston (SHIS).
At UT-Houston, Frieden’s primary appointment is in SHIS as a professor of health informatics, where he will direct the school’s new Laboratory for Adaptive Technologies. He will continue building on his work at the Independent Living Research Utilization (ILRU) program at Memorial Hermann | TIRR and at Baylor College of Medicine, where he serves as an adjunct professor of physical medicine and rehabilitation and of community and family medicine. He also is a professor of physical medicine and rehabilitation at The University of Texas Medical School at Houston.
READ MORE about Lex Frieden’s research collaborations.
President George W. Bush (pictured at left) has commended
UT-Houston’s Lex Frieden for his vision, energy and
commitment in promoting independent living.
“When I was in the rehab center, they told me ‘Look, you can do just about anything you could have done before your injury if you can do it from a wheelchair,” recalled Frieden, who rehabbed at Memorial Hermann | TIRR in Houston under the direction of William A. Spencer, M.D., and R. Edward Carter, Jr., M.D. “At the time, that did not seem terribly like it was a great task. Goodness, we were sending men to the moon! Here I was on earth and my only limitation was being in a wheelchair.”
However, Frieden had a hard landing when he tried to enroll in an Oklahoma university and was turned down because of his disability. “I couldn’t believe it – I had a 4.0 grade point, excellent test scores,” he recalled. “I spent several weeks in shock – it darn sure had an impact on the way I looked at life.”
Subsequently admitted to the University of Tulsa, he would graduate three years later cum laude with a bachelor’s degree in psychology. “A dean simply said that they would hold the classes that I wanted to take in a new building which was accessible, no big deal,” Frieden said.
Returning here to obtain a master’s degree in social psychology at the University of Houston, Frieden helped develop what was then one of the nation’s first independent living centers for people with disabilities.
“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 be independent and to take responsibility. And, we did,” Frieden said. “It was different from all other residences for disabled people at the time because we were the administrators, we hired and fired assistants, we handled scheduling of the van, we set curfew times (none) instead of some social worker or nurse or other professional hired as manager.”
In 1974, Frieden’s career as a disability rights advocate began in earnest when Spencer asked Frieden to petition Congress for more independent living centers. Only 25, Frieden traveled to Washington and laid the groundwork for an amendment to the Rehabilitation Act of 1978, which included 10 grants for independent living centers.
Asked to lead the National Council on the Handicapped in 1984, Frieden helped develop a report called “On the Threshold of Independence,” which included a draft that eventually became the ADA. President George H.W. Bush signed it into law in 1990.
The ADA led to the development of ramps at public buildings for those who couldn’t negotiate stairs, television captions for deaf and hard of hearing people and buses and restrooms that can accommodate wheelchair-users, among other things, Frieden said.
“The ADA was a major breakthrough because it was one of the first times that civil rights were considered in respect to people with disabilities, rather than viewing the condition as a charity case or social condition,” he said. “Disabled people throughout the United States were given equal footing in terms of civil rights and the law helped acknowledge discrimination.”
According to President George H. W. Bush, Frieden’s contribution to the independent living movement, and his instrumental role in the development of the ADA, have made a profound difference in the lives of many. President Bush nominated Frieden for the 1998 Henry B. Betts Award for service.
“Throughout his life, he has been a champion for people with disabilities, and I can think of no one more deserving of this honor than he," the President stated. "Since his injury in 1967, Lex has dedicated his life to improving the lives of all people with disabilities. I was proud to sign the ADA into law when I was President, and I am proud to have nominated Lex for this award."
Recently, Frieden has been focused on how people with disabilities should respond during times of crisis, particularly hurricanes.
The challenge hit home during Tropical Storm Allison in 2001 when Frieden found himself stranded in waist-deep water in his living room. “Houston is a fairly flat city so I knew at some point the water was going to find its level. But, it stayed waist-deep for six hours. I felt like I was stuck in a swimming pool.”
Four years later, when Hurricanes Katrina and Rita barreled into the Gulf of Mexico within a couple of weeks of each other, Frieden took action. “The Federal Emergency Management Agency was pushed beyond capacity in working with the unprecedented number of people who had been evacuated from their homes. On top of that, they did not know how to help the thousands of evacuees who had disabilities.”
So, Frieden mobilized his ILRU staff - many of whom are disabled. “We served as an information clearinghouse, matching needs with resources. FEMA gave disabled people our number, and for over two months, we handled calls all day long. People who had lost everything called to find help and left messages overnight for us to call back,” Frieden said. “We had daily staff meetings for problem solving. We’d present an issue, relate calls we received, and share ideas and new resources. It was a phenomenal experience. Unbelievable stories. And, we determined to be prepared next time, and to assist people with disabilities as well as agencies activated in times of disasters to become prepared as well.”
To start with, Frieden developed a training documentary, taped in part in an evacuation shelter in the George R. Brown Convention Center, and an accompanying handbook containing technical assistance for disabled victims during hurricanes or other catastrophes He works with FEMA and the Department of Homeland Security to ensure that when future disasters occur, these agencies will be better prepared to assist people with disabilities. For now, if he had one wish it would be to see every small town in America have universal vehicles for transporting individuals who need accessibility. While major cities like Houston have a public transportation system capable of accommodating disabled people, according to Frieden, the same cannot be said of rural areas or many medium-size towns. “There is a great deal yet to do,” said Frieden.
Frieden started the 22-person ILRU Program in 1977 to serve as a national center for information, training, research and technical assistance in the area of independent living and disability law. It is now a program of Memorial Hermann | TIRR.
Frieden lives in Houston with his wife of 30 years, Joyce, and their grandson, Trey. “I’m able to bring my personal experiences into play because my family and I are kind of a ‘living lab.’ The key to our successful relationships is cooperation, collaboration, synergy and symbiosis. We strive to work as a unit. Like any healthy family, we are mutually supportive of each other and make compromises.”