[Congressional Record Volume 141, Number 81 (Tuesday, May 16, 1995)]
[Senate]
[Pages S6748-S6749]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


                 CELEBRATION OF THE LIFE OF ED ROBERTS

  Mr. HARKIN. Mr. President, it was with profound sadness that I 
learned of Ed's death. On March 14, 1995, not only did the world lose 
one of our most dynamic and forceful advocates for the rights and 
empowerment of people with disabilities; on that day, I lost a friend 
and confidant.
  Ed Roberts was a kid who lived for baseball when he contracted polio 
at age 14. He became severely disabled almost overnight, needing large 
equipment and assistance simply to breathe. Ed overheard the doctor 
tell his mother that it would be better if he died because he was going 
to be a vegetable. He decided right then that if he was going to be a 
vegetable, he would be an artichoke: prickly on the outside with a 
tender heart.
  A lot of people told Ed there were a lot of things he could not do.
  They told him he could not graduate from high school because he could 
not pass PE or driver's education, so he 
[[Page S6749]] had to argue with and convince his principal to change 
these requirements because they were not fair.
  They told Ed he could not attend the University of California at 
Berkeley because they had never had a student in a wheelchair, one who 
used a respirator, or one who slept in an iron lung. Ed fought all that 
too, and convinced the university to admit him. ``Helpless Cripple Goes 
to College'' was one of the headlines marking Ed's entrance to college.
  They made him live in the infirmary. But Ed was not helpless. By the 
time Ed left UC Berkeley, he and fellow student activists who called 
themselves the Rolling Quads had organized funding to begin 
transforming the campus into a model of physical accessibility for 
students with disabilities.
  As Ed said, ``We realized that we could change some things, and the 
first thing we can do is change our own attitudes toward ourselves, be 
proud of who we were and what we were and go out and change it for 
others and for ourselves * * * that liberated me when I realized that I 
can help others. It made me a lot freer to help myself.''
  Ed went on to graduate school in political science and taught at UC 
Berkeley for several years. One of Ed's deans once told him, ``Oh, 
you'll finish your Ph.D and they you'll live in a nursing home.'' But 
Ed knew otherwise. He told that dean, ``No, that's not the plan. We're 
here to change that whole idea.'' And at his memorial service, a 
representative from the university described him as ``bringing the 
honor of being the right kind of troublemaker here at Cal.'' Today, 
over 800 students with many
 kinds of disabilities attend UC-Berkeley where there are scholarships 
in his name for undergraduate, graduate, and postdoctoral students with 
disabilities.

  After his university years, Ed went on to establish the first Center 
for Independent Living in the country. Where was it was located? Where 
else? Berkeley. Today there are over 300 independent living centers all 
across the country. Independent living is a philosophy which defines 
independence as full inclusion of people with disabilities in all 
aspects of community life. Ed lived this philosophy, and he helped 
others live it as well. His colleague Doug Martin, ADA and 504 
compliance officer for UCLA, recently described Ed during the CIL years 
when he said, ``He believed in us before we believed in ourselves.''
  Ed's philosophy of independent living, and his ability to get the 
money and the people behind it changed our lives. It changed the lives 
of millions of people in this country and abroad--people with 
disabilities, their families, their friends and many others who began 
to see the universality of his approach. As Ed put it, ``I'm paralyzed 
from the neck down, but I'm completely in control of my own life. I can 
make decisions about what I want.''
  Early on, they told Ed he was unable to be rehabilitated. However, 
this rehab failure went on to become director of the California State 
Department of Vocational Rehabilitation. You see, Ed loved to turn 
barriers upside down, rendering each one a challenge in his own slalom 
course toward empowerment and independence. And by the end of his 
tenure in Sacramento, Ed knew he wanted to be a full-time rabble-
rouser. Ed told his friend Stephen Hofman, ``I don't want to work. It 
prevents you from raising hell, and I like to raise a lot of hell * * * 
After all, if raising hell doesn't work, the only solution is to raise 
even more hell, and then, they give up!''
  As Joe Shapiro wrote in U.S. News & World Report the week after Ed 
died, ``He knew that it was the paternalism of others, more than his 
own disability that held him back.''
  In 1984, Ed was awarded a MacArthur Genius Fellowship, which he used 
to live on as he started The World Institute on Disability, a 
disability policy think tank located in Oakland, CA. Ed testified 
before committees in Congress numerous times, and many of us grew to 
know him well. But Ed was not content to be a solo rabble-rouser. He 
wanted to join forces, debate the issues, hammer out policy and see it 
implemented in his lifetime. WID was the crucible Ed fashioned with his 
colleagues for stoking fires and building community.
  Ed's vision was exemplified in the way he lived his own life, but he 
also very much believed in empowering others. As one of his colleagues 
at WID said, ``Part of his star quality was that he always talked about 
`we'. He always would come up and say
 `we've got to do that,' `we need people,' `we need to work on this 
together,' `we can make this happen.''' Ed blew people's minds when he 
took to the streets of Moscow in his motorized chair in 1993. There, he 
has become a symbol of freedom, a household word to millions of people 
with disabilities.

  But Ed was more than a civil rights hero. He was a man with heart, a 
man whose love and sense of humor were tools just as powerful as his 
keen mind and his passion for justice. Ed always took the time to find 
out how you were doing.
  He took the time to encourage young students with disabilities to 
study public policy.
  He took time to talk with personal assistants about the powerlessness 
of being underpaid.
  He took the time to visit other respirator users in the hospital when 
they were despairing over living independent lives.
  He took the time to stop on the street and talk with homeless people, 
people with disabilities that the ``system'' has forsaken.
  He took the time to laugh, to have an adventure, and always to eat a 
good meal!
  Ed did just about everything a person could dream of doing. He got 
married. He fathered a son--his absolute pride and joy. Ed swam with 
the dolphins, practiced karate, was almost eaten by a shark, threw 
tremendous dinner parties, and travelled all over the world. As WID 
vice president and one of Ed's former proteges, Debby Kaplan said 
recently, ``He had a determined exuberance for life.''
  We are all fortunate to live in this world which Ed so deeply 
touched, so richly celebrated.
  Mr. President, I yield the floor.
  

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