May 16, 1995 CONGRESSIONAL RECORD — SENATE 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.

At 11:58 a.m., a message from the

MESSAGES FROM THE HOUSE

fHouse of Representatives, delivered by

Ms. Goetz, one of its reading clerks, announced that the House has passed the

following bills, in which it requests the

concurrence of the Senate:

H.R. 1045. An act to amend the Goals 2000:

Educate America Act to eliminate the National Education Standards and Improvement Council, and for other purposes.

H.R. 1266. An act to provide for the exchange of lands within Admiralty Island National Monument, and for other purposes.

The following bill was read the first

MEASURES REFERRED

fand second times by unanimous consent and referred as indicated:

H.R. 1266. An act to provide for the exchange of lands within Admiralty Island National Monument, and for other purposes; to

the Committee on Energy and Natural Resources.

MEASURES READ THE FIRST TIME

The following measure was read the

ffirst time:

H.R. 1045. An act to amend the Goals 2000:

Educate America Act to eliminate the National Education Standards and Improvement Council, and for other purposes.

The following reports of committees

REPORTS OF COMMITTEES

fwere submitted:

By Mrs. KASSEBAUM, from the Committee on Labor and Human Resources, with an

amendment in the nature of a substitute:

S. 454. A bill to reform the health care liability system and improve health care quality through the establishment of quality assurance programs, and for other purposes

(Rept. No. 104–83).

INTRODUCTION OF BILLS AND

JOINT RESOLUTIONS

fThe following bills and joint resolutions were introduced, read the first

and second time by unanimous consent, and referred as indicated:

By Mr. HATFIELD:

S. 806. A bill to amend the Public Health

Service Act to provide grants to entities in

rural areas that design and implement innovative approaches to improve the availability and quality of health care in such rural

areas, and for other purposes; to the Committee on Finance.

By Mr. LIEBERMAN: