THIS MAN HAS MOVED
MOUNTAINS

Meet Lex Frieden, Senior Vice President of The Institute for
Rehabilitation and Research (TIRR)

Lex Frieden grew up in a small,
wheat-farming community in northwestern Oklahoma, “the perfect, homogeneous
Midwestern town where you went to the city twice a year to buy school clothes
and only old people used wheelchairs.” His mother was a homemaker, his father
the civic-minded president of the local natural gas company. In 1967, Frieden
was high school valedictorian, captain of the golf team, an Eagle Scout, a radio
talk show host and the boy his peers voted “most likely to succeed.”

Having won a President’s scholarship,
he enrolled in Oklahoma State University. A few days before winter break, a car
in which he was riding had a head-on collision. After the impact, he found he
couldn’t move. In fact, he couldn’t feel a thing. His neck was broken and his
spinal cord seriously injured.

“A neurologist pulled my mother aside
and asked, ‘Do you want your son to live?’ She said, ‘I don’t understand that
question.’ He said, ‘Well, you know he’s likely to be a vegetable. He might not
ever get out of bed again.’”

Even today, some Americans have a
hard time believing that disabled people can be high-functioning, highly
productive members of their community. For Frieden, fighting this attitude is
the toughest part of being disabled.

“The first time I experienced
discrimination I was devastated. After my accident, I couldn’t go back to the
State University because its very old buildings didn’t have elevators.”

“I was shocked when despite my 4.0
average, my exceptional test scores and my superlative recommendations, a
brand-new university in Tulsa turned down my application. When I called the
admissions office, certain there had been a mistake, I was told my application
had been denied on the basis of my disability, that I would be ‘too much of an
imposition on other students. What if I had to ask their help getting into the
few buildings with stairs?’”

After that conversation, Frieden
didn’t move or speak for three days. “I was practically catatonic. I couldn’t
even tell my parents. But this punch in the face strengthened my resolve. A few
weeks later, I enrolled in Tulsa University, where they simply scheduled classes
I chose to take in buildings that were accessible.”

Frieden graduated Tulsa University
with a degree in psychology and got his master’s in social psychology at the
University of Houston. In Texas, he moved into one of America’s first
independent living communities. “It was the only place I could live on my own.
We residents had the power to hire - and fire - the people who were assisting
us. And we were able to build one of the first non-medical, non-patronizing
models for physical assistance.”

After completing additional graduate
work, Frieden joined the faculty at the Baylor College of Medicine in Houston,
where he now serves as Professor. He is now the Senior Vice President of The
Institute for Rehabilitation and Research (TIRR)-a comprehensive medical
rehabilitation center which provides a continuum of clinical, educational and
research programs relating to spinal cord and head injuries and other disabling
conditions.

“One of my missions in life is to
spread the word about independent living. The idea is so simple. Disabled people
don’t need medical professionals to pull up their pants in the morning or
visiting nurses to help them sip their orange juice. Btu that’s exactly where
this overmedicalized economy has driven us. By reimbursing high-cost medical
services (and refusing to pay for less costly but more critical ones) we’ve been
forced to become the kind of people that drive health care costs up - instead of
bringing them down.”

“When we’re well,” he adds, “we need
non-medical assistance - help getting dressed, eating, traveling and getting in
and out of bed. When we’re sick, we need the attention of rehabilitation
specialists who understand our particular disabilities.”

Frieden wants those who are planning
the health care system of the future to understand that “a better mousetrap”
already exists. It’s just a matter of implementing a national system of
independent living and personal assistant services.

“At first, with the Americans with
Disabilities Act, people were afraid that making buildings accessible would
break the bank. Of course, this didn’t prove to be the case. It just made it
possible for that many more Americans to go to work. Providing personal
assistance and independent living centers to disabled Americans is the next
logical step.”

Frieden should know. He was a key
player in the passage of the Americans with Disabilities Act - the most sweeping
civil rights legislation since the Civil Rights Act of 1964.

In 1984, Frieden was asked to direct
the National Council on the Handicapped, a newly-created, independent federal
agency in Washington, D.C. He knew that Congress had given the agency a specific
mandate - to prepare a report that would lay out the nation’s public policy
towards people with disabilities.

Frieden moved to Washington and
directed the drafting of a document that became the bedrock of the Americans
with Disabilities Act. In 1990, only two years after the bill was formally
introduced, it was passed by Congress and signed into law by President George
Bush.

“Now we must ask ourselves the same
question that the neurologist asked my mother, ‘Do we want to let people with
head and neck and other traumatic injuries die?’”

“If we don’t, it’s our moral
obligation to make sure they don’t live the rest of their lives as vegetables -
dependent on overstressed families for their care or wasting away in nursing
homes. We have to give them what they need to lead productive lives.”

RWJF - May,
1994

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