>From the web page
http://www.ilru.org/ilnet/files/bookshelf/freedom.txt

April 17, 2000


Announcing the new ILRU Bookshelf Series!

Dear Friends:

ILRU is proud to present the first issue in the ILRU Bookshelf
Series, Freedom of Movement, by Steve Brown. Freedom of
Movement is a history of the independent living movement,
beginning with FDR and continuing to the present day.

Historian Steve Brown, co-founder of the Institute on Disability
Culture, based his account on the extensive research he has done
on the history of independent living, as well as his personal
experiences and the experiences of others who shaped the
movement.

We hope that you will keep Freedom of Movement and upcoming
issues in this series on your bookshelf and refer to them as you plan
advocacy training programs, prepare board member orientation
materials, or write grant proposals.

This first issue in the ILRU Bookshelf Series is a joint production
of the IL NET and the ILRU Rehabilitation Research and Training
Center on Management of Centers for Independent Living.

The IL NET is a collaborative project of Independent Living
Research Utilization (ILRU) and the National Council on
Independent Living (NCIL), with funding from the Rehabilitation
Services Administration.  The IL NET offers training and technical
assistance on operating, managing and evaluating CILs and SILCs.

Funded by the National Institute on Disability and Rehabilitation
Research, the RRTC is designed to assist CILs in developing
management strategies and service approaches which promote the
philosophy of independent living. We are grateful to RSA and
NIDRR for recognizing the importance of research, training, and
knowledge utilization in the field of independent living, and for
providing the resources necessary for us to conduct our work.

Sincerely yours,



Lex Frieden
Director, ILRU
enc.







Freedom of Movement
by Steve Brown, Institute on Disability Culture



 2000 ILRU
2323 S. Shepherd, Suite 1000
Houston, Texas 77019
713-520-0232 (V)
713-520-5136 (TTY)
713-520-5785 (Fax)
[log in to unmask]


ILRU Publications Team:
Carri George, Dawn Heinsohn and Rose Shepard
Substantial support for development of this publication was
provided by the U.S. Department of Education.  The content is the
responsibility of ILRU and no official endorsement of the
Department of Education should be inferred.

The IL NET is a collaborative project of Independent Living
Research Utilization (ILRU) and the National Council on
Independent Living (NCIL), with funding from the Rehabilitation
Services Administration.

ILRU is a program of The Institute for Rehabilitation and
Research (TIRR), a nationally recognized, freestanding medical
rehabilitation facility for persons with physical and cognitive
disabilities.  TIRR is part of TIRR Systems, which is a not-for-
profit corporation dedicated to providing a continuum of services
to individuals with disabilities.



INTRODUCTION

Can Independent Living (IL) history be separated from IL
philosophy?

When I began to write this monograph I thought I would start with
the students at the University of Illinois. But as I learned more
about that program I realized it may not have existed without
World War II veterans who needed an education. How, I then
wondered, does one distinguish the impact of World War II on
disability history from Franklin Delano Roosevelt (FDR), a
President who used a wheelchair and served as commander-in-
chief for most of that war? So I chose to begin the history with
FDR.

If someone thinks that the disability rights movement began in
1990 with the passage of the Americans with Disabilities Act or
the 1970s with the first centers for independent living, how would I
explain why I chose to begin with someone who predates those
events by several decades. The solution seemed to be using a
general explanation of IL philosophy as a preface to a beginning
discussion of the history.

One of the difficulties, as well as one of the pleasures of writing
this monograph, is that our history is so fragmented. I know of
nowhere else where all the information in this monograph is tied
together. As a historian assembling this monograph, I'm excited.
But as an advocate with a disability, it is frustrating to realize how
scattered our historical information remains.

Much more work needs to be done before we have even the
beginnings of a coherent, let alone comprehensive, history of our
movement. But as always, we must begin somewhere, and
therefore I choose to begin with a description of IL philosophy I
wrote several years ago that still seems appropriate.



INDEPENDENT LIVING PHILOSOPHY

Several fundamental beliefs have been combined to establish the
foundation on which to construct an independent living
philosophy. These premises include the notion that each individual
is different and unique; that people with disabilities are the most
knowledgeable experts about our own needs and issues; and that
programs serving disabled people should be designed to serve all
disability groups.

Just as every person is different from each other, so too are
disabling conditions. This applies not only to the differences
between differing disabilities, such as deafness and mental illness
and paralysis, but also to individual differences within each
disability category.

For example, each person with a disability who uses a wheelchair
is unique. Some people using wheelchairs are paralyzed, others are
not. Some use their feet, but not their arms; others their arms, but
not feet. Some wheelchair users use their breath to move their
chair, others their head.

The point is that just as each wheelchair must be designed to fit the
individual needs of the person using that mobility aid, so too must
every other adaptation be adjusted to the individual. To make this
equation just a little more complicated, disabling conditions, like
people, are often dynamic, not static. So the results of the disabling
condition itself are often changing and, to return to the example of
wheelchairs, an individual who uses a certain kind of wheelchair
one year may need a different kind the next so that there is a
constant adjustment to the changing conditions of the disability or,
even more salient, to the changing conditions of life.

Every individual and every disability condition is different,
therefore every individual with a disabling condition is unique.
People who are most familiar with disabilities, that is, those who
have them, are best-suited to discuss the needs and issues of people
with disabilities. This is not to say that a person without a disability=

is incapable of knowing, understanding, or empathizing with what
it is like to have a disability. But it is to say that it's much more
likely for a person with a disability to possess these characteristics.

The notion of one person with a disability having some
understanding of another person with a disability forms a primary
underpinning of independent living philosophy, which is the
concept of peer support. In independent living terms, a peer is
someone with a disability who is a role model and/or support
person for another person with a disability.  Translated to other
movements, it is the same concept that drives Alcoholics
Anonymous and all the other anonymous self-help programs. It
drives the concept of groups as institutionalized as the YW and
MCAs and of groups as historically radical as the Black Panthers.

The ideas of peer support and people with disabilities knowing
what is best for ourselves leads directly into the concept of people
with disabilities running our own programs. That is why many
independent living programs require boards of directors to have at
least a majority of their members be people with disabilities.

But there is another very important reason for people with
disabilities managing their own programs. This is the whole issue
of empowerment. For someone who is not empowered, and as a
group people with disabilities are not, it is of utmost importance
that power positions, such as boards of directors, can be perceived
as role models.

A useful analogy is that of Women's Resource Centers.  Few
people would argue that men should run programs for women.
Men are not women and no matter how hard we may try there are
just some things that men will never be able to have in common
with women. So it makes sense for women to be the primary
participants in running programs designed for women. Now just
plug in the phrase "people with disabilities" for women in the
preceding three sentences.

Substitute "nondisabled people" for men in the same sentences. See
if it makes sense. If it does, then one has just agreed with one of
the basic philosophies known in independent living jargon as
"consumer control," that is people with disabilities as the
consumers of programs designed for them also ought to be the
principal players involved in their direction and management.

The final philosophical framework of independent living programs
is that they should be designed to serve all disability groups. This
may be the most controversial of the independent living beliefs.
Many population groups--including people with hearing
impairments, visual impairments, brain injuries, mental retardation,
psychiatric disabilities, and probably any other disability
demographic population identified--have stated at one time or
another that separate services are necessary for their specific
conditions.

Proponents of the independent living philosophy known as cross-
disability counter that all people with disabilities are oppressed and
that there is little difference in the big picture of the discrimination=

against people with disabilities. To paraphrase a well-known quote:
oppression is oppression is oppression.

Cross-disability advocates will agree that there may be different
tools to use toward the overarching goal of independence.  For
example, a deaf person may need sign language for communication
and a person with a head injury may need a tape recorded reminder
to do a task and a person whose legs don't work well may need a
wheelchair.  But beyond the necessity of different tools is the
common goal of an opportunity for full participation in the
cultural, social, economic and political aspects of our society.

The driving beliefs of independent living philosophy are a
recognition that each person with a disability, like each person, is
unique; that because of this uniqueness people with disabilities are
in the best position to guide, direct, and control their own
programs; and that because all people with disabilities are
oppressed, independent living programs need to be designed to
ensure equal social, cultural, economic, and political opportunities
for all disability groups. (Brown, Independent Living 2-5)

In the next section, we'll look at the life of FDR to consider if he
might be called a predecessor of the disability rights movement.
To put it another way, could FDR have been considered, "a peer. . .
someone with a disability who is a role model and/or support
person for another person with a disability."


WAS HE OR WASN'T HE?

FDR grew up in a wealthy, civic-minded family in New York state.
A personable and vigorous young man, he followed the path of his
cousin, President Theodore Roosevelt, first in joining the Navy,
then in quickly becoming a successful politician. Unlike his older
cousin, FDR's first Presidential election was a losing one as the
Vice-Presidential candidate of the 1920 Democratic slate.

Shortly thereafter, his political future unclear, he contracted polio.
Both his legs became permanently paralyzed and he became a
wheelchair-user.

FDR's wealth and contacts enabled him to pursue physical
rehabilitation anywhere he chose.  He selected Warm Springs,
Georgia.  He poured much of his energy and wealth into building a
modern rehabilitation facility there.

For many years, historical accounts of FDR's polio treated it as a
brief and isolated incident in his life which probably proved to his
political benefit. These narratives contend that voters felt distanced
from the healthy and wealthy FDR. But polio became a great
equalizer. It demonstrated that even someone with FDR's breeding
and riches could be brought down a notch or two and in so doing
would become more appealing to the voters who would elect him.
In addition, FDR turned to his wife Eleanor, whose compassion is
now legendary, to keep him in touch with everyday issues and the
average citizen. Finally, his long recovery enabled him to write
many letters, entertain visitors, and make numerous contacts in a
concerted effort to reenter the political scene. He did so with great
success. FDR was elected governor of New York in the latter part
of the 1920s, setting the stage for his quest to become President.

Hugh Gregory Gallagher eloquently opposes this traditional
narrative in his groundbreaking study FDR's Splendid Deception.
He argues that this typical portrayal of a short bout with polio
contains little understanding of disability and its long-range effects. =


FDR took great pains to hide the extent of his disability from the
public. While the polio virus itself had disappeared and the
consequent impairments did not technically make FDR "sick," that
was how both he and the American public viewed disability. FDR
fit the classic description of an invalid.

The word invalid describes someone who is incapable of caring for
themselves. Although illness or sickness is not necessarily a
permanent aspect of disability, it is an inherent concept of
invalidism. Since no distinction was made between an invalid and
a disabled person, that individual was considered to be sick.

FDR refused to let that mistaken perception prevent him from
resuming his political career.  The course he chose was to convince
the American public that he was neither sick nor in-valid, and
therefore not disabled in its classic sense. If he could persuade the
American public that he was still healthy and vigorous, then they
would believe that FDR could fulfill the duties of public office. To
fool the American public into believing that polio had only done
minimal physical damage required elaborate, conscious planning,
massive assistance, and--from today's vantage-- unbelievable
media corroboration.

When FDR appeared in public he did not use his wheelchair. He
rose from a seated position using braces and crutches. He was not
stable or graceful. Aides held him up creating an illusion that FDR
walked without assistance. Crowds "witnessed" FDR walking from
his seat to a podium or some other device that he could stand and
lean against. Rather than appearing as a sickly invalid, FDR gave
the appearance of a healthy politician.

The media supported FDR's efforts to hide the extent of his
disability. By conscious yet informal agreement, radio, newspaper
and film correspondents simply did not discuss FDR's paralysis.
Thirty-five thousand photographs were shot of FDR as President,
but only two show him seated in his wheelchair, and these were
never published (Hevey 102). This conspiracy of image makers
extended as far as political cartoonists who would never draw FDR
in his wheelchair, but always standing or walking--or running, or
flying!

Although many Americans knew on some level that FDR used a
wheelchair, the disguise was so successful that many other
Americans professed their ignorance of his disability. As recently
as the mid-1990s, this author encountered an individual working at
an independent living center who yelped with astonishment upon
learning that FDR had a disability. According to Gallagher, this
was FDR's "splendid deception" because it enabled him to rise to
the Presidency during a time in which everyone was convinced that
no one with such a disability could even aspire to that position.

What did FDR's cloaking of his paralysis and wheelchair use mean
for people with disabilities? The conclusions are diverse and
murky. For many people with disabilities, FDR was a hero, a
person who had overcome his disability and acquired the nation's
most coveted office. He developed Warm Springs into an
international rehabilitation facility. There he drove his car with
hand controls that some credit as the first ever designed. Even
some people who do not like what FDR did to gain the Presidency
believe that he had no choice: given the climate of the times he was
forced to hide his disability to succeed politically. Others bemoan
his massive coverup, suggesting this meant that FDR, too, harbored
his generation's beliefs about disability meaning illness and
invalidism. He was unable to take his own personal situation and
generalize it to others in similar circumstances. This, some argue,
not only demonstrates FDR's acceptance of disability as illness, but
it also contributed to future generations harboring those same
beliefs.  But, as we will see in the next section, FDR's ambivalence
about disability not only affected future generations, but had a
significant impact on people who might have been called his peers.
(Brown Investigating 42-45)


THE LEAGUE OF THE PHYSICALLY HANDICAPPED

The example of the New York League of the Physically
Handicapped, rediscovered by historian Paul Longmore in the late
1980s, demonstrates why many people have difficulty portraying
FDR as a champion of disability rights. Like Longmore and FDR,
most League members had contracted polio, though a few had
cerebral palsy, tuberculosis or heart conditions.  Unlike FDR, none
used wheelchairs. League members came together because they
believed they faced discrimination from private industry. They
thought that New Deal policies, the name for the programs that
FDR spearheaded to combat the Great Depression, would assist
their quest for equitable employment. Instead, New Deal programs
classified them as "unemployable."

Six League members went to a New York City agency in May of
1935 to discuss these discriminatory policies. When told the
individual they wanted to see was out of town, some League
members refused to leave. They had not planned to demonstrate,
but that is what they did. Three League members remained in the
building for nine days. Picketers with and without disabilities
supported them outside of the building. Following three weeks of
these protests, the group decided to organize formally.

Six months later, in November of 1935, they conducted a three
week picket at the New York headquarters of the Works Progress
Administration (WPA), one of the primary New Deal agencies for
employment. They demanded that, "handicapped people receive a
just share of the millions of jobs being given out by the
government." As a result, the WPA hired about forty League
members. Some skeptical League members believed this action
was taken to squash the group, but instead it gained momentum.

In May 1936, a year after their first action, League members
traveled to Washington, D.C., to meet with WPA leader Harry
Hopkins. When they were informed that he was "away," they voted
to stay until "Mr. Hopkins does see us."

Three days later Hopkins did meet with the group. He informed
them that he didn't believe there were as many employable New
Yorkers with disabilities as the League contended. He also said
that he wouldn't change his mind unless he saw an analysis that
disproved his belief. Then, he promised, he would take action
immediately to correct these conditions.

Several months later, the League presented Hopkins with its
"Thesis on Conditions of Physically Handicapped," a ten-page
document that offered a comprehensive analysis of the situation.
The "Thesis" described job discrimination in private and public
sectors and recommended preferential civil-service hiring of
disabled veterans and handicapped civilians as well. It also
criticized public and private vocational rehabilitation as being
underfunded and inadequate. Other employment programs the
League critiqued as guilty of worse crimes:  sending people to
demeaning jobs, including ones as strike-breakers. The League's
"Thesis" also accused New Deal programs of ignoring the
problems of people with physical disabilities and categorizing
people with disabilities as "unemployable."

Betraying his word, Hopkins ignored the "Thesis."  The League,
dissatisfied with its Washington experiences, renewed its
concentration on its New York activities.

In September 1936, the League joined forces with the League for
the Advancement of the Deaf to secure a promise that 7% of future
WPA jobs in New York would go to deaf and handicapped
individuals. As a result, 1500 people went to work. Unfortunately,
more than 600 lost their jobs the next spring during nationwide lay-
offs.

The League's experiences with New York's WPA was indicative of
both its successes and failures. On the positive side, the League did
get a number of people jobs and open the public sector to some
workers with disabilities. It did not, however, as it had hoped, alter
federal policies towards people with disabilities working.

In looking at the history of independent living, the League did not
establish a base for future activism. But it did bring to the limelight
in the 1930s some issues that would be addressed later in the 1970s
and 1980s. League tactics will also seem similar to some current
disability protests.  Finally, and maybe most importantly, the
League identified social problems plaguing people with disabilities
that still remain with us.

League picket signs included ones that said, "We Don't Want Tin
Cups," and "We Want Jobs." The first could be said to pre-date the
current movement against telethons. The second could still be used
to protest the current more than 70% unemployment rate of people
with disabilities (Longmore and Goldberger 94-98; Longmore,
personal communication).


WORLD WAR II VETERANS

Wars always impact disability. If nothing else, wars increase our
numbers. There is also often a parallel between war and advances
in medicine. An example from World War II (WWII) is that before
antibiotics and treatments developed during the war to prevent
decubitus ulcers, 80% of those who acquired spinal cord injuries
died during the acute phase of their medical care (DeLoach 37).

In the twentieth century, wars have also accelerated disability
policies. Both the Paralyzed Veterans of America and the
President's Committee on Employment of the Handicapped began
shortly after World War II ended. Veterans also benefited after
World War II from PL 702, housing legislation passed in 1948 to
provide veterans with service-connected disabilities a $10,000
grant in addition to a $10,000 loan to purchase, build, or modify a
house (DeLoach 37- 38).

Veterans, seeking social reintegration, had significant local
impacts. Veterans also had a profound influence on the roots of
independent living. In Los Angeles, for example, four WWII
veterans began classes at UCLA in 1946 where they were assisted
by CAL-VETS, a group of volunteers who carried the vets into
inaccessible buildings (DeLoach 37). Our story continues with
veterans in the small Midwestern towns of Kalamazoo, Michigan,
and Champaign-Urbana, Illinois.


FREEDOM OF MOVEMENT

Jack Fisher was born on September 17, 1918, in Kalamazoo. He
learned about the bombing of Pearl Harbor in December 1941
when he was nine months away from graduation at Harvard Law
School. Unwilling to continue at Harvard after the bombing, he left
school and enlisted in the army. While serving in Oklahoma, he
received injuries in a jeep accident in 1943. He was sent from
Tinker Field, a US Air Corp Base in the Oklahoma City area, about
fifty miles southwest to Borden General Hospital in Chickasha,
which housed a special orthopedic unit.  Beds there were arranged
head to toe so that no one breathed on someone else. The ward he
stayed on was for people confined to bed. He remained there from
October to February.

For more than four months he roomed with 40 non-ambulatory
patients. While lying in a full body cast and traction, he leafed
through the medical records of other patients to keep busy. This
engrossed him during the day so he could sleep at night. At his
discharge in February 1944, Fisher wore steel braces from hips to
neck and walked with a pronounced limp.

While continuing to recuperate and learning to live with his
residual physical problems, Fisher, at the age of twenty-five,
returned to Kalamazoo. He would not return to Harvard Law
School while the war waged on.  He was determined to obtain a job
in a defense industry. While trying to get a job, he kept getting told
that with his braces and spastic right leg he could not be used, not
even for the lowest possible clerkship. Companies were afraid he'd
fall and puncture a lung, risking worker's compensation  claims. He
was even rejected at Kalamazoo's biggest defense company where
he knew the personnel director.

At this point the Disabled American Veterans (DAV) contacted
Fisher.  The DAV informed Fisher that they needed his help. About
five hundred (500) disabled veterans had submitted claims to
obtain medical services, financial compensation, wheelchairs,
rehabilitation and more.  Their files were waiting to be processed.
Fisher facilitated hundreds of claims between February 1944 and
August 1944 when he finally returned to Harvard Law School.

Fisher graduated from Harvard Law School in February 1945.
Large and prestigious eastern firms generally sought Harvard
graduates. Fisher's experience was different. Although he had
graduated in the top third of his class, he encountered two forms of
discrimination. Some firms refused to hire him stating that his
disabilities and braces made him a poor risk for health and
additional injuries; others would not hire him because he was
Jewish.

He decided to begin his own practice. From the first day, disabled
veterans whom Fisher had previously assisted retained him as their
attorney. He remembers his practice looked like an emergency
room, with clients using crutches, wheelchairs and other adaptive
equipment. These disabled veterans also brought their parents,
grandparents, aunts, uncles, siblings and friends. He worked on all
kinds of problems from purchasing real estate to wills, business
ventures, leases, marital concerns and more.   Fisher was immersed
in the lives of individuals with disabilities as fellow veterans,
friends, acquaintances and clients. He learned about the problems
of access, mobility, employment, the bedroom and the bathroom.

Fisher journeyed the short distance from Kalamazoo to Percy Jones
Hospital in Battle Creek (the old Kellogg sanitorium featured in the
movie The Road to Wellville) because it was the official
government hospital to treat and rehabilitate amputees. A huge
number of both above and below the knee amputees resided in
Battle Creek. Many would travel the short distance to Kalamazoo
for the bigger city's more active social life. It was not uncommon to
see many people using prostheses. Unfortunately for those going
downtown, Kalamazoo had quite tall curbs and people would fall
on them breaking stumps and injuring themselves. Wheelchair
users were simply unable to travel downtown.

In 1945, Fisher took it upon himself to get curb cuts and side-pipe
rails. He petitioned the Kalamazoo city commission and testified
before them. The city manager, whose adult son used a wheelchair,
understood the problem firsthand. The city commission authorized
the construction of cement ramps with safety rails in the central
business district. Test ramps were constructed in 1945 and placed
at the corners of three or four blocks.

A local DAV chapter monitored their usage. In a March 1946 letter
to the mayor, Fisher stated that the "ramps were instrumental in
allowing disabled veterans, disabled non-veterans, aged and infirm
persons and mothers with baby carriages more freedom of
movement..." and that "These cement ramps in many instances
mean the difference between disabled veterans and disabled non-
veterans having employment, as with the ramps a person confined
to a wheelchair, on crutches or wearing an artificial limb is able to
get to a place of employment unaided. The ramps thus enable many
so called unemployable persons to become employable persons,
and not only benefit the disabled person alone, but benefit the
community at large as well."

Kalamazoo's city commission responded to the experiment by
becoming the first city government known to approve a curb cut
program, appropriating $680 to install 34 additional curb cuts
(Brown, "The Curb Ramps of Kalamazoo").


BUILDING PLANKS TO ROLL ON:  THE GREAT
EXPERIMENT AT THE UNIVERSITY OF ILLINOIS

While Jack Fisher worked to implement curb cuts in Kalamazoo,
other firsts were taking place in Illinois. In the 1947-48 academic
year, a former Veterans Administration Hospital in Galesburg,
Illinois, was converted into a satellite campus of the University of
Illinois. The University took this action to accommodate the many
World War II veterans seeking to utilize the funding of the GI Bill
to earn their college degrees.

A year later, however, in 1949, it was decided that the Galesburg
campus would be closed.  The program's director, Timothy Nugent,
appealed unsuccessfully to hundreds of other universities and
colleges to adopt the program. There were no takers. Unwilling to
accept defeat, Nugent and the students loaded into several cars and
set off for the state capitol in Springfield to request that Governor
Adlai Stevenson intervene to stop the closure. They staged protests
that included building temporary ramps from wooden planks to
show how easy it would be to accommodate wheelchairs.

Their effort did not succeed. The campus closed. The students
refused to give up. They continued their self-advocacy by seeking
to move the "Rehab Program," as they called it, to Champaign-
Urbana. Support for the continuation of the program at the main
campus was minimal. Most administrators believed that
individuals with severe physical disabilities could not possibly live
"normal" lives, could not have families and could not obtain
gainful employment. Why boost their hopes with a prestigious
University of Illinois degree?

The experiment might have ended then except the same group of
students with disabilities took their show on the road to
Champaign-Urbana. Their goal in traveling to the main campus
was to demonstrate that, with minimal architectural and personal
assistance, they could successfully negotiate the campus and that
they were more than equal to the challenge of the institution's
academic programs. After a day of demonstrations, the university
begrudgingly granted provisional or "experimental" status to the
rehabilitation program at Champaign-Urbana.

Attitudes about disability at the university were vehemently
expressed.  A father of a non-disabled woman dating a post-polio
law student despaired that, "I suppose the University should
receive some credit for trying to help these poor unfortunates, but
isn't there something you can do to protect our sons and daughters
from these freaks?"  (Expanding Horizons, ii)

The university, wary about the program, limited the number of
students that could be admitted--refusing 15 students for every one
who got in.  For its first eight years the program received no
university funding. Nugent drummed up money from outside
sources. Students continued to advocate for themselves by
demonstrating their abilities through a myriad of activities,
research about disability issues and athletic exhibitions ("History of
the Division of Rehabilitation").

Campus buildings were not access-friendly. Quonset huts,
remaining from World War II, were used as dorms for the first
group of students. Campus legend says the huts were unheated with
beds in a row, just like the military. The huts were later converted
to house the rehab program's administration offices. They also
contained a physical therapy room for students who received credit
for physical education classes by participating in PT (Breslin).

After large numbers of people with mobility impairments were
admitted, the university ramped buildings and modified the World
War II Quonset huts. As new dormitories were built, a limited
number of rooms in each building were designed to accommodate
students with disabilities. The first floor of most dorms had
bathrooms with accessible shower stalls that had aluminum fold
down seats and accessible toilet stalls (in the old style--with a door
wide enough to face the toilet in the forward position and grab
bars). Alumna and contemporary disability advocate Mary Lou
Breslin recalls that these dorm rooms were identical to those on the
upper floors, which could be reached by elevator in most cases, so
the real access was to the first level itself (elevator or ramp) and
bathrooms.

The program offered disabled students medical services, physical
and occupational therapy, prosthetics, counseling, recreation and a
bus service. By the mid-1950s, the Rehabilitation-Education
Program (DRES) provided support services and had several lift-
equipped buses that made hourly trips around the campus, town
and to special university events.

In 1954, a politically savvy group of students with disabilities
succeeded in getting Illinois Governor William Stratton to serve as
the keynote speaker at the annual disabled students' awards
banquet. Although the banquet had not previously been attended by
University administrators, the Governor's appearance packed the
house. That evening, Governor Stratton gave a stirring speech on
the benefits of rehabilitation and the importance of the effort being
developed at Illinois. From that point on, although many battles
would have to be fought and won in the war for egalitarian access,
the program's legitimacy was never again seriously questioned
("History").

The Illinois program expanded to include non-veterans in the
1950s and offered accessible transportation; housing to
undergraduate, graduate and married students; peer counseling;
specialized medical care; individually designed assistive devices
and ADL training (DeLoach 41).

The folklore of the Illinois program is that it equated independence
with a physically self-reliant lifestyle. No students could live in
university housing if they could not move about campus or had to
request help from someone else in self-care activities.  Students
were required to come to campus early for a week of "functional
training." If students could not transfer in and out of bed, dress,
bathe and toilet themselves, or maneuver, in their manual
wheelchairs, up and down ramps and to the bus stops by
themselves in a reasonable amount of time, they were rejected, sent
home, invited to practice their skills and reapply. The memory of
one student contradicts this well-known folklore. "In fact, some
students who couldn't really do these things did occasionally get
admitted. One I remember vividly died of complications of
muscular dystrophy. I have always thought it was because he had to
struggle so to move about in the freezing weather" (Breslin).
Students who successfully completed this training could still be
expelled later if they were discovered receiving assistance in their
living quarters or being pushed across campus (DeLoach 41-42).

By the early to mid-60s there were about 200 students, with one or
two with communication disabilities. "When I was there [there
were] several severely disabled students, i.e. high quads or very
weak folks with MD who lived in a nearby nursing home, which
was then believed to be the only appropriate way to provide
personal care for such individuals. Several used power chairs,
though the technology was primitive. The obvious point was
nursing care was the only answer to not being able to do self care
unaided. This practice ended at some point after I graduated"
(Breslin).

Perhaps the most popular activities were sports--wheelchair
basketball and track, judo for the blind, quadriplegic rugby. Sports,
Nugent believed, boosted the athletes' self-confidence and
dispelled the notion that disabled students were frail and sickly
(Breslin).

Nugent also "was responsible for drafting the first ANSI standards,
originally created around the dimension of Everest & Jennings
standard push chairs" (Breslin).

Although not as well known in independent living circles as some
other university programs, the University of Illinois claims the
following firsts:
=FA The seminal research which led to the development of the first
architectural accessibility standards that would become the
American National Standards Institute Standards
=FAThe first wheelchair accessible fixed route bus system
=FA The first accessible university residence halls
=FA The first university service fraternity and advocacy group
comprised of students with disabilities (Delta Sigma Omicron)
=FA The first collegiate adapted sports and recreation program for
students with disabilities, which also produced the first wheelchair
athlete in the world to win an Olympic Gold Medal ("History")

With all these advances, why is it that disability advocates tend to
recall the University of California as the trailblazer for disability
programs? That is the subject of the next section.


POLIO AND THE ED ROBERTS STORY

Veterans inspired the curb cuts of Kalamazoo and the changes in
the student population at the University of Illinois. Just as medicine
increased the longevity and expanded the activities of veterans
wounded in the military, medical progress also had enormous
consequences for non-veterans.  Medical breakthroughs
dramatically affected the polio epidemics of the 1940s and 1950s.
Unlike FDR, many of these individuals contracted polio at an early
age and did not come from wealthy families.

The polio epidemics of the 1940s and 1950s left about 400 people
around the country who both used respirators and were
institutionalized. One hundred fifty eight of these individuals were
housed at Rancho Los Amigos Medical Center near Los Angeles.
The March of Dimes paid their bills, but as that organization
became increasingly strapped for funds, they turned over this
responsibility to Los Angeles County.

The County, in 1953, conducted a study about  attendant care costs.
The investigation revealed that each iron lung user would cost the
county $10 per day if they lived at home. The hospital billed the
state $37 per day for identical services. This discovery led to
beginning California's In Home Support Services (IHSS) program,
one of the nation's first personal assistance programs (Levy 4-5).

At his home in Burlingame, south of San Francisco, a teenager
named Ed Roberts, who had contracted polio and used an iron
lung, received IHSS. As he grew older he became credited with
breaking the barrier against significantly disabled people attending
universities. Roberts has been called the Martin Luther King Jr. of
the disability rights movement, the father of independent living.
Toward the end of his life, he liked to call himself the godfather.
Before Roberts passed away in 1995, he conducted many
interviews. Many people also viewed Roberts as one of the best
public relations persons in independent living. As a result, quite a
bit is known about his life. What follows is his story. It is
representative of many others.

Roberts contracted polio when he was in high school. As a result of
the virus he lost all but some movement of two fingers on his left
hand and two toes on his left foot. The rest of his body, including
his lungs, remained paralyzed, though he always retained feeling.
Unable to breathe on his own for extended periods, he became a
ventilator-dependent quadriplegic. He required a machine, such as
an iron lung or a ventilator, to assist him with breathing.

The only person in his school to contract polio, Roberts resumed
his education at Burlingame High School at the age of eighteen. He
attended via a phone hook-up. It began with a phone connected to
one room at the high school. When Ed pressed a bar on the phone
he could be heard, when he released the bar he could hear, enabling
him not only to listen but to communicate with his classmates.

Roberts graduated from high school, at the age of twenty, in 1959.
But not without a fight.  His post-polio paralysis prevented him
from taking either physical education or driver's education courses.
His high school counselor thought Ed should remain in school
another year.  Zona, Ed's mother, was determined that her boy
would be as similar to his peers as possible and was mystified by
this turn of events.

Zona contacted the principal about the inequity of the situation. He
supported his counselor.  Zona next called a friend who also
happened to be a school board member. A school representative
met with Zona and Ed at their home and asked, "Ed, you wouldn't
like a cheap diploma, would you?" A furious Zona contacted the
superintendent of schools. She also notified some of Ed's teachers.
Before they could act, the assistant superintendent of schools
announced that everyone was proud of Ed and granted the diploma.
Roberts later commented that he attained some of his own sense of
determination from watching Zona persevere about his graduation.
Ed enrolled at the nearby community College of San Mateo. To
attend classes he was placed in a corset which enabled him to sit
up. A head brace emerged from the back of the corset.  At first,
Zona brought Ed to campus. They solicited help from passers-by to
get Ed in and out of the car on campus, learning to avoid football
player types who refused supervision. Ed attended class by himself,
with assistance from fellow students to traverse the numerous
steps. Another student was eventually hired to drive Ed.

Roberts spent three years at the College of San Mateo, finishing
two years of classwork. To complete assignments, Zona wrote
while Ed dictated. Ed speculated about a career as a sportswriter.
Others discussed technical writing. He eventually chose political
science as a major.

The most fortuitous development at the College of San Mateo
occurred in Roberts' second semester when he enrolled in an
English class taught by Jean Wirth. Jean, like Ed, knew about
difference. She had been six feet, five inches tall from the time she
was twelve years old.  She became his unofficial advisor.

Jean asked Ed where he wanted to continue his education after
graduating from the College of San Mateo. He responded UCLA.
Roberts knew about the veterans who had attended and he thought
that would make it fairly wheelchair-accessible. Jean dissuaded
him from this idea because UCLA was a commuter campus. He
would have to find housing, transportation, personal assistance,
and friends away from the university. She suggested he apply
instead to the University of California at Berkeley (UCB) where
there was an outstanding political science program. Ed did just that
and was accepted at UCB. The application form asked no questions
that related to disability. The only hint was that Ed weighed only
eighty-five or ninety pounds.  Zona accurately predicted that school
officials would guess Ed forgot to put a "1" before the other
numerals.

Ed also applied to the California Department of Rehabilitation
(DR) for financial assistance.  The DR counselor informed Ed that
he was too severely crippled ever to work and would therefore be
denied services. Zona, Jean, and Phil Morse, Ed's official advisor
at the College of San Mateo, then met with DR to advocate
successfully for Ed.

While this was happening, Jean, Zona, Ed and Phil visited the
UCB campus prior to the commencement of the school year. UCB
personnel were shocked to learn that Ed was a post- polio
ventilator-using quadriplegic and were at a loss about where he
might be housed. His large iron lung wouldn't fit in a dorm room.
Morse contacted the Dean of Men, who suggested they see Henry
Bruyn at Cowell Hospital, the on-campus student health center.

Bruyn, a physician, had worked with polios and commented that
they were becoming of college age and should be able to attend
college. He thought Ed could probably live at Cowell.  Successful
negotiations to do just that continued throughout the summer.

During Ed's first academic year, 1962-63, the same year that the
African-American James Meredith integrated the University of
Mississippi, Ed was the only student with a disability at Cowell,
and, as far as we know, the first student with a disability of this
significance to attend an American university. An area paper ran a
story about Ed headlined "Helpless Cripple Goes to School." It
caught the attention of a social worker in nearby Antioch whose
client, John Hessler, had broken his neck while diving. Towering
above six feet tall, he was too big to be cared for by his parents and
he lived in a Contra Costa hospital. He attended Contra Costa
College, going back and forth by taxi. His social worker spoke with
Henry Bruyn, and John joined Ed at Cowell in the 1963-64 school
year.

Bruyn began to earn a reputation for this program. Several more
students arrived in 1965-66.  Their attendance initiated a formal
program for students with disabilities. The students began
identifying with one another, calling themselves the Rolling Quads.
With a nursing supervisor, the Rolling Quads took over the entire
third floor of the hospital. Each student lived in his or her own
room. They mingled in a common room and ate together in a
dining room.

Ed's DR worker in Berkeley, unlike his geographically-appointed
counselor in Burlingame, supported his efforts. DR now paid for
tuition, books and secretarial help. This changed again in the late
1960s when DR installed a new worker. She believed it was her
responsibility to dictate behavior. She attempted to direct Ed's
thesis topic, tried to instruct other students in what classes they
could take, and strived to get two students evicted because she
didn't approve of their educational goals or lifestyles.

The students responded to this counselor with activism. They
informed the press of their frustration with her dictatorial methods
and succeeded in getting her transferred. This success led to other
actions. The Rolling Quads formally organized themselves into a
student organization, and as such they developed and taught a
university studies class called "Strategies of Independent Living,"
the main purpose of which was to conceive methods to live outside
of Cowell. They began to talk to the Berkeley city council about
building ramps in the city. The Rolling Quads got the city's
attention when they went out in the middle of the night with their
assistants and started taking sledgehammers to some of the curbs
around campus and pouring tar on them to create makeshift ramps.
Some of these still exist today. The Rolling Quads not only tested
their own limits as fledgling citizens, they also began to understand
their own power.

By the late 1960s, as the Rolling Quads' activism heated up,
Roberts prepared to leave Berkeley. He had completed both
undergraduate and graduate school, finishing all but his
dissertation. Ed accepted a temporary job at the Disabled Student
Services program in Riverside, near Los Angeles.

Before Ed moved, Jean Wirth called Zona from Washington to
share information about a bill containing a lot of money for
disadvantaged students, with ten percent of the budget earmarked
for disability programs. Jean suggested Zona come to Washington
for meetings about how to utilize the money, but Zona had a
scheduling conflict and recommended Jean call Ed.
Ed was agreeable and experienced his first airplane flight. Roberts
weathered the first of many adventures traveling as an individual
with a disability. First, no breathing apparatus was allowed on the
plane, so Ed was forced to do exhausting frog-breathing for hours
in the air. Then after landing he sat for hours while they retrieved
his manual wheelchair. Jean arrived at the hotel before Ed to
arrange for an iron lung to be delivered to the hotel. She learned
that an iron lung would not be allowed because "they blow up you
know."

Despite these hardships, Roberts loved Washington. He reveled in
interacting with Senators and Secretaries, and with time's passage
he realized that he made a lasting impression.

Since Ed was on his way to his temporary job in Riverside, he
urged John Hessler and others to submit a proposal to the old
Cabinet Department of Health Education and Welfare (HEW) for
funds to institutionalize what they had learned as the Rolling
Quads. Their first attempt did not get funded, but their second one
did. It became the Physically Disabled Students Program (PDSP).

John Hessler became director of the program. Roberts, meanwhile,
did not remain in Riverside long. His physician advised him to
leave because the area was harmful to people with breathing
problems. He moved to Woodside in the South San Francisco Bay
area and began teaching at Nairobi College in East Palo Alto. The
college attracted less traditional students than those attending UCB
or nearby Stanford.

PDSP began to attract individuals with disabilities from around the
San Francisco area.  Many callers were not students, but there was
nowhere else they could obtain the services they needed. The need
to create an organization similar to PDSP for non-students became
apparent.

Three people, all of whom had been Rolling Quads, began an
organization they called the Center for Independent Living (CIL).
A small research and development grant enabled them to rent a
small apartment to begin CIL. John Hessler, a CIL board member,
quickly became concerned that the much-needed CIL would fail
because of a lack of leadership. He contacted Roberts, who had
recently returned to Berkeley from Woodside, about his fears.

Ed and John met with their friends to discuss a CIL board take-
over. Their strategy succeeded. Roberts then became CIL director
because he did not have a job, while Hessler directed PDSP. Ed
expanded CIL rapidly and a national, then international, reputation
quickly followed.

When Jerry Brown became governor of California in 1974, three of
his former law school classmates, who also happened to be friends
of Ed's, nominated Ed to become director of the Department of
Rehabilitation (DR). Brown interviewed Ed and appointed him DR
director in late 1975. Independent living advocates rarely tire of
telling the story of Ed becoming the boss of the agency that had
once told him he was "too severely crippled" ever to work. (Brown
"Zona and Ed Roberts")

As chief of DR, Roberts soon had the opportunity to institute
independent living throughout California. In his first year,
$500,000 from the state budget set up eleven independent living
programs in the state (Kidder, 10). Shortly thereafter, in the debate
over amendments to the Rehabilitation Act in 1978, Roberts was
one of many who fought to implement independent living centers
in the federal budget.


THE INDEPENDENT LIVING MOVEMENT

Because a comprehensive history of the disability rights and
independent living movements is still to be written, the story of Ed
Roberts is often discussed as the cornerstone of the independent
living movement's origins. But just as Ed's story is a tale of many
people, so too is that of the independent living movement. Perhaps
most telling is the fact that the same year that CIL in Berkeley
began operations, so too did Threshold, an independent living
center in Helsinki, Finland. And like CIL, Threshold began first as
a student movement. When CIL began in the early 1970s, similar
organizations sprouted throughout the United States as well as
other parts of the world. For example, a group in Boston began the
Boston Center for Independent Living (BCIL). Unlike CIL, BCIL
focused on housing issues. BCIL provided housing and attendant
services to those college students housed on the fourth floor of the
theological college at Boston University, and attendants were
recruited from theological students (DeLoach 43). BCIL became
formally established in 1974. Other groups formed in Houston,
Ann Arbor and many other places across the country and around
the world.

This was indeed a movement.

In Washington, D.C., Hugh Gregory Gallagher (long before he
authored FDR's Splendid Deception) worked in a congressional
office. Gallagher became extremely frustrated in trying to use the
inaccessible Library of Congress. He authored the Architectural
Barriers Act of 1968, which became the first federal legislation to
address architectural accessibility . Unfortunately, it would be
years before that kind of thinking and legislation would be
enforced. But it's another example of the incipient movement.

How the disability rights movement evolved from "helpless
cripples" to a political force includes all of the preceding
individuals and actions. In addition, numerous policies have
affected disability issues. Perhaps the most important in a history
of the independent living movement is the story of Section 504 and
the Vocational Rehabilitation program.


"WE WILL ACCEPT NO MORE DISCUSSION OF
SEGREGATION"

SECTION 504 AND VOCATIONAL REHABILITATION

Many advocates consider Section 504 of the Rehabilitation Act of
1973 the nucleus of all ensuing progress in obtaining disability
rights. Section 504 stated:

No otherwise qualified handicapped individual in the United States
shall, solely by reason of his handicap, be excluded from the
participation in, be denied the benefits of, or be subjected to
discrimination under any program or activity receiving federal
financial assistance.

This concise paragraph guaranteed disabled individuals specific
civil rights for the first time in history. Vocational rehabilitation,
however, began in the early twentieth century? What was its
purpose? Why was Section 504 so radical? How come many
disability advocates consider Section 504 the opening salvo in the
battle for modern disability rights? This section provides a brief
history of Vocational Rehabilitation from its beginnings until the
early 1970s when the discussion shifts to the campaign to
implement Section 504.

Vocational rehabilitation, like many other government programs,
did not develop in a vacuum. In fact, it was a culmination of a
whirlwind of societal changes.

At the end of the nineteenth century, many community leaders
advocated educating all citizens to ensure that the vast numbers of
new immigrants understood the civic workings of their new
country. Colleges and universities increased in number at the same
time. But not everyone now required to obtain an education would
attend college. Teaching a manual trade to students who didn't
attend college was called vocational education.

While vocational education became part of the landscape of early
twentieth century models of education, new medical treatments
enabled people with disabling conditions to live longer. Just as
medical advances affected post World War II social movements,
this earlier medical progress stimulated social change. A new
discipline called "rehabilitation" evolved to work with these
individuals.

Rehabilitation's purpose was to find ways to alleviate disabling
conditions by keeping people with disabilities in an appropriate
social setting. Combining rehabilitation with vocational education
led to vocational rehabilitation (Brown Investigating 39).

The first laws funding vocational rehabilitation were passed as
World War I ended. Congress first passed the Smith-Hughes Law
(Vocational Education Act) of 1917, establishing a Federal Board
for Vocational Education (FBVE) to work with men with
disabilities in hospitals and encampments. The following year
Congress  unanimously ratified the Soldier's Rehabilitation Act to
assist returning World War I veterans to join the labor pool
(Lenihan 51; M. L. Walker 25).

Two years after the Soldier's Rehabilitation Act, President
Woodrow Wilson signed the first federal act providing vocational
rehabilitation services to civilians with disabilities. The program
gave states a choice about participating in it. Most states chose to
do so. Just four years after the 1920 passage of the Vocational
Rehabilitation Act, thirty-six of the forty-eight states belonged to
the program (M. L. Walker 33).

The FBVE, the umbrella agency to which vocational rehabilitation
belonged, consisted of the cabinet secretaries of commerce,
agriculture and labor as ex-officio members and three salaried
members responsible for its operations. John Kratz, vocational
rehabilitation (VR) chief in 1924, convinced the FBVE and
Congress to renew VR for six years.

Early statistics maintained by VR indicated a modest expenditure
of $12,000,000 had rehabilitated 45,000 people between 1921 and
1930. This averaged out to a cost of about $300 per person. By
1930, nine more states participated in the program. A total of 143
rehabilitation workers were employed in 44 states. VR's apparent
efficiency led to its renewal in both 1930 and 1932 with increased
levels of funding support. Vocational  rehabilitation became a
permanent program in 1935 (M. L. Walker 39, 58).

In the early thirties, VR transferred to the Office of Education in
the Department of the Interior. It did not thrive in this setting.
Rehabilitation workers felt their role in placing people with
disabilities in the workforce differed from a narrow focus on
education. They longed to be housed in another agency. It moved
to the Federal Security Agency, created in 1939, along with the
Office of Education, but VR continued to be dissatisfied with its
place in the hierarchy (M. L. Walker 102-103).

A year later, in 1940, Congress extended vocational rehabilitation
services to people with disabilities working in sheltered
workshops, those who were homebound, and those in the
workforce who required services to remain employed. This
significant increase in responsibility set the stage for a decade of
greater funding and responsibility. VR grants increased 75% in
1940 and continued to increase throughout the 1940s. In July of
1943, services were broadened to include physical restoration and
people with mental illness as clients (Scotch 21; Shapiro 143: M.
L. Walker 103).

Vocational Rehabilitation continued to amass larger budgets and
greater prestige throughout World War II and the post-war years.
Mary Switzer, a career bureaucrat, became director of the agency in
1950. A long-time advocate of vocational rehabilitation's mission,
Switzer spent the next two decades zealously expanding its role
and power (M. L. Walker 125- 26, passim).

Switzer guided a comprehensive legislative package through
congressional appropriations in 1954. State vocational
rehabilitation grants rose to a budget of $30,000,000. Additional
monies for training medical and rehabilitation professionals
established long range agency precedents.  Switzer persuaded
Congress to fund research and development in medicine and
rehabilitation engineering, in-service training programs,
rehabilitation centers and sheltered workshops.  Switzer also
obtained permission to create separate vocational rehabilitation
agencies outside of state education agencies (Scotch, 1984, 22).

In the following decade, rehabilitation became a soldier in
President Lyndon Johnson's "War on Poverty." Funding levels
continued to increase, greater numbers of individuals became
eligible to receive services, and state matching fund requirements
decreased (M. L. Walker 23).

Mary Switzer reluctantly retired in 1970 when she reached the
then-compulsory retirement age of 70 (M. L. Walker 253). Her
impact has remained legendary within the rehabilitation
community. But she might not recognize the evolution of disability
rights that occurred after her death a year later.

During Switzer's last years directing VR, organizations like centers
for independent living were in their formative stages. Activists
with disabilities, like the founders of CIL, empathetic rehabilitation
workers, and progressive Congressional colleagues worked
together in the early 1970s to implement an agenda for the
vocational rehabilitation agency that recognized disability rights.
This led to the writing of Section 504.

Sociologist Richard Scotch documented the genesis of Section 504
in his book From Goodwill to Civil Rights. He contended that
government bureaucrats developed Section 504.  But the late John
Hessler, who followed Ed Roberts at Cowell and went on to be a
founder of PDSP and CIL, disagreed with Scotch's narrative in a
letter published in the Disability Rag.  Hessler remembered a
number of activists participating in the concepts and language
proposed in the Rehabilitation Act of 1972. According to Hessler's
letter, Fred Collignon, a Berkeley community planner who worked
with then Rehabilitation Agency Commissioner Ed Newman,
actively involved many Berkeley activists in the planning of the
early 1970s act. Hessler wrote that he, along with other disability
advocates, worked on language that appeared in the eventual act,
including the controversial Section 504 (3).

In the Rehabilitation Act of 1972, Hessler and his colleagues
across the country thought they had devised a progressive piece of
legislation. It included concepts of independent living, client
advocacy programs and some prohibitions of discrimination. But
President Richard Nixon vetoed the legislation. He predicted that
no one had thoroughly assessed the ramifications of the legislation.
His own forecast was that parts of the act, like independent living
and Section 504, would be extremely costly and become an
administrative nightmare.

Nixon's 1972 veto sparked demonstrations across the country. Judy
Heumann, who  organized disability rights protests in New York
City and who had successfully fought being denied a teaching job
because she used a wheelchair and who later became the United
States Department of Education Assistant Secretary of the Office
of Special Education and Rehabilitative Services, recalled in a
1980 conversation that New York's Disabled In Action organized a
demonstration of sixty to eighty people to go to Manhattan's
federal building to protest Nixon's 1972 veto. When they arrived,
they discovered the building was in an isolated section of the city.
The demonstrators piled back into their vans and other vehicles,
drove to Madison Avenue and stopped traffic on up to four blocks,
effectively publicizing their demands (Heumann in "We Won't Go
Away...").

In 1973, Congress passed another version of the Rehabilitation
Act. This one contained changes Nixon approved, including
eliminating independent living and client advocacy programs. But
Section 504 remained in the compromise bill. President Nixon
signed the Rehabilitation Act of 1973 in September. But more
struggles remained (Scotch 56-57).

Section 504, still viewed by disability advocates as the linchpin of
change, became bogged down in the Nixon cabinet.  HEW
expressed the same concerns about costs and administrative
headaches that had caused Nixon to veto the earlier bill. The
cabinet department simply refused to issue regulations to
implement the law.

Frustrated by this federal inaction, James Cherry and the Action
League for Physically Handicapped Adults sued the government in
1975 for issuance of 504 regulations. The next year, disabled
leaders demonstrated in HEW Secretary David Matthews' office
and threatened to picket the 1976 Republican Convention. A
federal notice of intent to publish proposed rules materialized in
the May 17, 1976 Federal Register. In July of the same year, the
courts ruled 504 regulations should be promulgated but did not set
a deadline.  A second federal notice of intent to publish proposed
rules was published in mid-July with little change from the earlier
edition (Scotch 93-96; Brown Investigating 55-57).

During the 1976 presidential campaign, the Philadelphia contingent
of Disabled in Action invited representatives from both major
parties to a press conference. The Carter campaign emissary was so
totally unaware of disability issues that DIA practically ran her out
of the room. She returned to local Carter campaign headquarters
and reported how tough DIA had been on her. She then educated
herself and convinced the local Carter staff that this was important.

The campaign staff sent her back to talk to the group. Out of that
meeting came an effort to organize nationwide for Jimmy Carter.
The American Coalition of Citizens with Disabilities (ACCD),
which had formed the previous year and with which DIA in
Pennsylvania was associated, became the national disability focus
of organizing for Carter (Pfeiffer).

Passage of 504 regulations became a battle cry of disability
activists throughout the country.  Two days after President Jimmy
Carter's inauguration in January 1977, about fifteen people met
with new HEW Secretary Joseph Califano to advocate for rapid
distribution of regulations. The administration received a deadline
of April 4, 1977, to issue regulations or disability advocates would
pursue an alternative course. Califano resisted for some of the
same reasons that Nixon originally vetoed the entire act. He feared
that both actual and administrative costs would be more far
reaching than anyone imagined (Eunice Fiorito in "We Won't Go
Away . . ."; Scotch 104).

Disability advocates scheduled a series of demonstrations to follow
the April 4 deadline. Ten cities across the country were targeted.
The most successful action occurred in San Francisco.  More than
150 people took over the federal building there and remained for
twenty-eight days. Judy Heumann, who had moved to Berkeley to
work at CIL in 1973, was one of the event's planners and a leader
of the takeover. Ed Roberts, in his new position as director of the
California Department of Rehabilitation, did not officially engage
in planning the protest but left his Sacramento office to join the
protest.  Early in the action, Heumann, in a statement reminiscent
of freedom fighters of all ages, declared, ". . .we will no longer
allow the government to oppress disabled individuals...we will
accept no more discussion of segregation" ("We Won't Go Away . .
.").

The protest in San Francisco worked because many in the
community supported it. The city's mayor ordered law enforcement
personnel to leave the protesters alone. The Black Panthers and the
Gray Panthers brought in food donated by Safeway and assisted
with personal care needs. Attendants were allowed to go back and
forth from the building to bring necessities.  This also enabled a
communication network with those outside the building to be
established (Shapiro 67-68).

Local news stations aired the story. Evan White filed the most
comprehensive reports, though he was so new to the field that he
did not yet have credentials to file national news stories. But
White's luck was good.

Heumann left San Francisco during the occupation to lead a
delegation to Washington to talk personally with Califano. He
refused to meet with them. They decided to camp on his front lawn
until he changed his mind. Evan White traveled from San
Francisco to Washington with the group to report the story. A
media strike left a void in national news stories, and uncredentialed
stringers filed stories. White's coverage of the demonstrations
made national news networks and both the story and his career
took off (Walker, personal communication).

After twenty-five days of protests, sitting in, and having
demonstrators camped on his lawn, Califano signed the 504
regulations. Victorious protesters emerged from the federal
building chanting "We Shall Overcome." The siege remains the
longest takeover of a federal building by any group in American
history (Brown Investigating 57-58; Shapiro 69).

A White House Conference on Handicapped Individuals was
scheduled to occur May 23-27, 1977. Some speculated one reason
Califano signed the regulations was because he knew that 3,000
persons with disabilities and their supporters were on their way to
Washington. If he had not signed the regulations by the time they
arrived, then many demonstrations would have occurred to the
embarrassment of the Carter administration (Pfeiffer).

The successful protests to implement 504 could be considered the
first battle of an ongoing war disability advocates have waged to
change vocational rehabilitation. Although hardly the only program
affecting disability issues, VR has for many years been perceived
as one of the most important influences on disability politics.


FROM BUILDINGS TO STREETS: A GLANCE AT THE LATE
1970s

The disability rights movement accelerated phenomenally in the
late 1970s. The scope of this history permits only a glimpse at the
people and changes that followed the successful protests for
implementation of Section 504.

1977 was the year that Houston's Independent Living Research
Utilization (ILRU), the first research organization about
independent living, began. ILRU was led by Lex Frieden, one of
the significant leaders of that part of the country. Frieden, from
northwestern Oklahoma, had been a college freshman at Oklahoma
State University in Stillwater when he was involved in a car
accident. He became a quadriplegic. After his accident, Frieden
began to analyze the roles society had created for people with
disabilities--and rebelled against them. At ILRU, Frieden and his
colleagues developed a definition of independent living that is still
being used: "control over one's life based on the choice of
acceptable options that minimize reliance on others in making
decisions and in performing everyday activities" (Frieden et al. 3).

One year after the 504 demonstrations and ILRU's founding,
another kind of group emerged.  ADAPT developed from a radical
Denver CIL called the Atlantis Community. Atlantis began when
the late Wade Blank, a white veteran of civil rights marches
working at a Denver nursing home, rebelled against the oppression
he witnessed in that institution. A fictionalized account of Blank's
role in the disability movement was highlighted in the 1990
television movie "When You Remember Me," about the fight to
remove a young boy with muscular dystrophy from a nursing home
to a community-based residence. Blank's role in that action
awakened in him a desire to protest the pervasive discrimination
against people with disabilities.

One issue of obvious and symbolic importance was transportation.
In the 1950s, blacks protested because they had to sit in the back of
the bus; but in the 1970s, disabled people protested because they
couldn't get on the bus. People who used wheelchairs had no way
of entering a bus, even though equipment such as wheelchair lifts
was available, comparatively inexpensive and fairly easy to use. A
group of nineteen Denver activists organized with Blank to form a
group called American Disabled for Accessible Public Transit
(ADAPT).

The first ADAPT demonstrations were staged on July 5 and 6,
1978, in Denver. Soon other ADAPT chapters and similar
organizations formed throughout the country. Their methods of
protest included blocking buses or chaining oneself to a bus so it
couldn't move. The theory was that if disabled people could not use
the buses then neither could anyone else.

Police quickly arrived to arrest the protesters. But it was not such a
simple process. First, police often still thought of disabled people
as sick and vulnerable and were either cautious about injuring them
or careless about not doing so. Second, the paddy wagons, like the
buses, were frequently inaccessible, so police had no way to
transfer people to jail. And if they did find a way, the jails were
often inaccessible. The protests continued and ADAPT became the
first long- term United States grass roots movement of disability
activists (Brown Investigating 58-59).


INDEPENDENCE IN THE 1980s AND 1990s

The story of independent living in the past two decades is one of
growing pains and what some would term a stormy adolescence.
Representative examples are used to describe the history of the past
twenty years. A more detailed list of pivotal laws and activism is in
Appendix A: Selected Significant Dates in Independent Living
History.

During the late 1970s, the first group of federally funded
independent living centers feared that in debates surrounding the
next reauthorization of the Rehabilitation Act, CILs would be
eliminated. Since CILs were still categorized as demonstration
projects, not renewing them would be fairly simple. CIL advocates
discussed their situation and decided to hold a meeting of all CILs
in 1981. From this assembly developed what is now known as the
National Council on Independent Living (NCIL). The national
organization, first known as the National Council of Independent
Living Programs, elected Max Starkloff, founder of Paraquad in St.
Louis and former nursing home resident, as its first president. The
association then coalesced to ensure that its members retained
funding and that they adhered to the independent living philosophy
as described at the beginning of this history.

Adhering to this philosophy has not come without battles.  Perhaps
the most famous of the period occurred in Norman, Oklahoma,
when five of six staff members walked out of their CIL because of
continuous confrontations with their board, including arguments
over consumer control (Brown "The Walkout").

One way to put this conflict into a bigger picture is within the
context of models of viewing disability. The one that has most
often been called to task within independent living circles is the
medical model.

Medicine, like all disciplines, has its method. A physician is
trained to detect symptoms, diagnose ailments and prescribe cures.
A person with a disability is not sick. A disabled person may
become ill with a cold, or flu, or measles, or any other ailment a
nondisabled person might acquire. But having a disability is not the
same as being perpetually indisposed. There are many healthy
quadriplegics. There are also sickly quadriplegics. But the
quadriplegia itself is simply an inability to use all or part of four
limbs. It is a disability; it is not an illness.

Medical personnel are not trained to appreciate this distinction.
They are instructed to cure illnesses. When that is not possible, as
in the case of disability, medical training is inadequate.
Medical solutions to disability issues have been called a medical
model. This model is distinguished by perpetuating the notion that
someone who has a disability is broken, in disrepair, or infirm.
This perception is easily integrated into medical training. If
patients are broken, they can be fixed. If ill, they can be cured.
There is only one viable alternative to this philosophy, and that is
death.  There is no room for any intermediate position. Ongoing
disability does not enter into the equation.

In the medical model, if people can neither be fixed nor cured and
will not die, then they are no longer of medical concern, other than
easing the inevitable wait for departure from this world. The
medical model validates previous perceptions of incompetence,
deviance, and invalidism. Individuals with disabilities have no
worth in either the medical or the social hierarchy. As one might
imagine, this philosophy leads to confrontation with the notion of
capable, valuable human beings with disabilities put forth by
advocates with disabilities (Brown Investigating 52-53).
In the confrontation in Norman, the fallout from the medical model
was apparent.  People without disabilities felt a need to tell people
with disabilities how to run their organization and, by extension,
their lives. People with disabilities who were learning to rebel
against models that had invalidated their own choices responded
defiantly.

This led to a change in the last revision of the Rehabilitation Act in
the 1980s. Known as consumer control, this change requires that
more than half of the members of the board of directors in each
center for independent living must be individuals with disabilities.
In the 1990s this was expanded to include CIL management as
well.

As independent living centers not only remained in the
Rehabilitation Act but increased in numbers and funding, NCIL
gained momentum throughout the 1980s. During the latter part of
the decade, Marca Bristo, disability rights activist and executive
director of Access Living in Chicago, who in the Clinton years has
chaired the National Council on Disability, became the
organization's president. She led a fight against what some
observers saw as a Ronald Reagan supported backlash against
progress for individuals with disabilities. Reagan unsuccessfully
attempted to overturn Section 504. But Reagan is not easy to
dismiss simply as an anti-disability leader. He also appointed Lex
Frieden to direct the National Council on the Handicapped (now
National Council on Disability) and Justin Dart as commissioner of
the Rehabilitation Services Administration. Each of these
individuals became pivotal in advancing our rights. While Frieden,
Dart and others worked with the Reagan administration, Bristo's
leadership and fiery orations guided demonstrators into opposition
protest marches.

One of the most detrimental decisions of the 1980s came from the
Supreme Court, which ruled in the mid-1980s that 504 applied
only to the part of an institution that directly received federal
funds. This meant that entire universities, for example, did not
have to comply with Section 504, only that part of the school that
put federal funds in its program's budget. Disability advocates
fought for several years to negate this ruling, and in 1988 Congress
passed, over Reagan's veto, the Civil Rights Restoration Act which
ensured that "Federal anti-discrimination statutes apply to an
institution in its entirety if it accepts Federal aid for as little as o=
ne
program" (Levy 34).

While advocates fought to restore the intent of 504, Lex Frieden
led a study at the National Council on the Handicapped about the
place of people with disabilities in American society.  Published in
1986 as Toward Independence, the monograph described
discriminatory policies towards people with disabilities in housing,
employment, transportation, education and other aspects of
American life. It called for the passage of a law which would bar
such discrimination. This led advocates to draft legislation that
eventually became the 1990 Americans with Disabilities Act
(ADA).

One of the national stories that helped convince Congress to pass
the ADA occurred in 1988 at Gallaudet University--the world's
only university for students who are deaf and hard of hearing. In
1987, Gallaudet's president announced his resignation. Early the
next year, several Gallaudet students concurred that the time was
right for the university to select its first deaf president. The
Gallaudet board of trustees ignored the students and chose the only
hearing person of three candidates. The deaf student population
rebelled with what became known as the Deaf President Now
movement. Taking their issues to both the national media and to
Congress, the Deaf President Now movement quickly amassed
national support. In a matter of one week, the Gallaudet board
agreed to the student demands, hiring popular and deaf Gallaudet
dean of arts and sciences I. King Jordan as president. They also
changed the composition of the board of trustees to half deaf
(Shapiro 75-83).

The injustice of a hearing person trying to run a deaf university
struck a chord with both the American people and Congress and
helped both to understand why people with disabilities would want
a law like ADA. It was one of many stories that helped achieve
passage of what has been called the most important civil rights law
since the Civil Rights Act of 1964.

Personal stories often embrace solutions to much larger matters.
Autobiography, in fact, often plays vital roles in the passage of
laws. This situation occurred with the fight to pass the Americans
with Disabilities Act of 1990 (ADA).

Justin Dart, a longtime disability advocate, spent a considerable
amount of time and money traveling to every state in the union in
the late 1980s to collect information demonstrating the need for the
ADA. He asked people to write or relate discrimination diaries,
experiences that people with disabilities had in their everyday lives
that led to their belief in the desirability of a such a law.

Many stories were collected. Some of the more poignant
storytellers testified before Congress. One was a young woman
from the state of Washington who has cerebral palsy. She testified
that she tried to get into her hometown theater to see a movie, but
the ticket taker would not admit her because her speech was
slurred. This woman's story touched the heart of many members of
Congress and President Bush, who recounted it when greeting
celebrants at the ADA signing (Brown, Investigating 74; Shapiro
105-06, 140).

The ADA was not passed without many confrontations. ADAPT
led a march on the Capitol steps in which people abandoned their
wheelchairs and crawled up to the entryway to Congress. On the
second anniversary of the signing of the ADA in 1992, Denver
dedicated a plaque to the first ADAPT activists of the late 1970s.
Wade Blank, as a nondisabled person, didn't believe his name
belonged on the plaque, but he did visit it once a week to clean it
of bird droppings and other debris (Hartman, personal
communication).

During the remainder of the 1990s, independent living advocates
have fought to solidify their gains, expand independent living
centers, retain the intent of the ADA in court decisions, get people
who do not want to languish in nursing homes out into the
community and fight the trend toward passage of assisted suicide
legislation.


INDEPENDENT LIVING IN THE YEAR 2000

>From the institutionalization of independent living centers to the
current court cases that are redefining the meaning of ADA, the
independent living movement has been an incredibly active part of
our nation's late twentieth century history. There are now more
than 600 centers in existence in every state and many countries.
What can we expect at the dawn of the next millennium? Here are
some highlights:
=FA More and more disabling conditions will be recognized as
important to the independent living movement, such as people with
psychiatric disabilities, mental retardation, multiple chemical
sensitivities, AIDS and new conditions that arise.
=FA The recognition among more people with disabilities and the
mainstream population that there is such a thing as Disability
Culture, the movement by people with disabilities to infuse our
own experiences into all aspects of everyday life, as most easily
seen now in books, movies, music and other expressions of art.
=FA The importance of persuading the mainstream media to
understand our issues from our perspective.
=FA The national organizing for the Spirit of ADA to celebrate our
lives and victories from the last twenty-five years, culminating
with events around the country on or about July 26, 2000, the tenth
anniversary of the signing of the ADA.
=FA A comprehensive history of our movement and its importance
written by one of us!


REFERENCES

Berkowitz, E. D. Disabled Policy: America's Programs for the
Handicapped New York:  Twentieth Century Fund, 1987.

Breslin, Mary Lou. Personal communication.10 July 1999.

Brown, S. E. "The Curb Ramps of Kalamazoo: Discovering Our
Unrecorded History."  Disability Studies Quarterly, 19 (3),
(Summer 1999), 203-05.

- - -. Independent Living: Theory and Practice. Las Cruces, NM:
Institute on Disability Culture, 1994.

- - -. Investigating a Culture of Disability: Final Report. Las
Cruces, NM: Institute on Disability Culture, 1994.

- - -."The Walkout." Disability Rag September 1985: 39-40.

- - -. "Zona and Ed Roberts: Twentieth Century Pioneers."
Disability Studies Quarterly forthcoming.

DeLoach, Charlene. "The Independent Living Movement." Region
V Rehabilitation Continuing Education Program ADA Train the
Trainer Program. Carbondale, IL: Southern Illinois University at
Carbondale Rehabilitation Institute, 1992.

Fisher, Jack. Letter to Mayor Henry Ford, Jr. 7 March 1946.

Frieden, Lex, Laurel Richards, Jean Cole and David Bailey. ILRU
Source Book: Technical Assistance Manual on Independent Living.
Houston, TX: Independent Living Research Utilization, 1979.

Gallagher, H. G. FDR's Splendid Deception. New York: Dodd,
Mead, 1985.

Hartman, Tari Susan. "If Heaven Isn't Accessible, God is in
Trouble," Incitement (ADAPT Newsletter) 9.1 (Jan./Feb. 1993): 1-
2, 8-9.

Hartman, Tari Susan. Personal communication. 18 August 1999.

Hessler, John. Letter. Disability Rag Sept. 1985: 3.

Hevey, David. The Creatures Time Forgot: Photography and
Disability Imagery. London: Routledge, 1992.

"History of the Division of Rehabilitation-Education Services."
Division of Rehabilitation Education Services, College of Applied
Life Studies, University of Illinois at Champaign-Urbana.
<http://www.rehab.uiuc.edu/history.html>

Kidder, Lynn. "They Fought Disabilities and Won." Antioch Daily
Ledger, 1 10-12.

Lenihan, J. Performance: Disabled Americans: a History.
Washington, D.C.:  President's Committee on Employment of the
Handicapped, 1976-77.

Levy, C. W. A People's History of the Independent Living
Movement. Lawrence, KS: University of Kansas Research and
Training Center on Independent Living, 1988.

Longmore, P. K. Personal communication. 14 July 1999.

Longmore, P. K., and David Goldberger. "Political Movements of
People with Disabilities: The League of the Physically
Handicapped, 1945-38." Disability Studies Quarterly 17.2 (Spring
1997): 94-98.

National Council on the Handicapped. Appendix. Toward
Independence: an Assessment of Federal Laws and Programs
Affecting Persons with Disabilities With Legislative
Recommendations. Washington, D.C.: GPO, 1986.

Pfeiffer, D. Personal communication. 20 July 1999.

Rehabilitation Act of 1973.  Pub. L. 93-112. 29 USC Sec. 794.

Scotch, R. K. From Good Will to Civil Rights: Transforming
Federal Disability Policy.  Philadelphia: Temple, 1984.

Shapiro, J. P. No Pity: People with Disabilities Forging a New
Civil Rights Movement.  New York: Times Books, 1993.

University of Illinois at Champaign-Urbana, Division of
Rehabilitation-Education Services. Expanding Horizons: a History
of the First 50 Years of the Division of Rehabilitation-Education
Services at the University of Illinois. Champaign, IL:  Roxford DT
Publishing, 1998.

Walker, M. L. Beyond Bureaucracy: Mary Elizabeth Switzer and
Rehabilitation. Lanham, MD: University Press, 1985.

Walker, P. Personal communication. 29 Sept. 1993.

We Won't Go Away.... Prod. Patricia Ingram. Videocassette. 1981.
Available from World Institute on Disability, 510 16th St.,
Oakland, CA 94612


APPENDIX A

SELECTED SIGNIFICANT DATES IN INDEPENDENT LIVING
HISTORY
(for a more comprehensive list see:
http://www.sfsu.edu/~hrdpu/chron.htm)

1918: The Smith-Sears Veterans Vocational Rehabilitation Act
establishes a federal vocational rehabilitation program for disabled
soldiers.

1920: The Fess-Smith Civilian Vocational Rehabilitation Act is
passed, creating a vocational rehabilitation program for disabled
civilians.

1921: The American Foundation for the Blind is founded.

1927: Franklin Roosevelt co-founds the Warm Springs Foundation
at Warm Springs, Georgia.
     The U.S. Supreme Court, in Buck v. Bell, rules that the forced
sterilization of people with disabilities is not a violation of their
constitutional rights.

1929: Seeing Eye establishes the first dog guide school for blind
people in the United States.

1932: Disabled American Veterans is chartered by Congress to
represent disabled veterans in their dealings with the federal
government.

1933: Franklin Delano Roosevelt, the first seriously physically
disabled person ever to be elected as a head of government, is
sworn into office as president of the United States.

1936: Passage of the Randolph Sheppard Act establishes a federal
program for employing blind vendors at stands in the lobbies of
federal office buildings.

1937: Herbert A. Everest and Harry C. Jennings patent a design for
a folding wheelchair with an X-frame that can be packed into a car
trunk.

1940: The National Federation of the Blind is formed in Wilkes-
Barre, Pennsylvania, by Jacobus tenBroek and other blind
advocates.
     The American Federation of the Physically Handicapped is
founded by Paul Strachan as the nation's first cross-disability,
national political organization.

1944: Howard Rusk is assigned to the U.S. Army Air Force
Convalescent Center in Pawling, New York, where he begins a
rehabilitation program for disabled airmen. First dubbed "Rusk's
Folly" by the medical establishment, rehabilitation medicine
becomes a new medical specialty.

1945: President Harry Truman signs a joint congressional
resolution calling for the creation of an annual National Employ
the Handicapped Week.

1956: Accent on Living begins publication.

1958: Gini Laurie becomes editor of the Toomeyville Gazette at
the Toomey Pavilion Polio Rehabilitation Center. Eventually
renamed the Rehabilitation Gazette, this grassroots publication
becomes an early voice for disability rights.

1960: The first Paralympic Games, under the auspices of the
International Paralympic Committee (IPC), are held in Rome, Italy.

1961: The American Council of the Blind is formally organized.
The American National Standards Institute, Inc. (ANSI) publishes
American Standard Specifications for Making Buildings
Accessible to, and Usable by, the Physically Handicapped.

1962: Edward V. Roberts becomes the first severely disabled
student at the University of California at Berkeley.

1963: South Carolina passes the first statewide architectural access
code.

1964: Robert H. Weitbrecht invents the "acoustic coupler,"
enabling teletypewriter messages to be sent via standard telephone
lines. This invention makes possible the widespread use of
teletypewriters for the deaf.

1968: The Architectural Barriers Act is passed, mandating that
federally constructed buildings and facilities be accessible to
people with physical disabilities. This act is generally considered to
be the first ever federal disability rights legislation.

1970: Nursing home resident Max Starkloff founds Paraquad in St
Louis.
     Disabled in Action is founded in New York City by Judith
Heumann, after her successful employment discrimination suit
against the city's public school system.
     The Physically Disabled Students Program (PDSP) is founded
by Ed Roberts, John Hessler, Hale Zukas and others at the
University of California at Berkeley.
     Congress passes the Urban Mass Transportation Assistance Act,
declaring it a "national policy that elderly and handicapped persons
have the same right as other persons to utilize mass transportation
facilities and services." The law contains no provision for
enforcement.

1971: The National Center for Law and the Handicapped is
founded at the University of Notre Dame in South Bend, Indiana,
becoming the first legal advocacy center for people with
disabilities in the United States.

1972: The Center for Independent Living (CIL) is founded in
Berkeley, California.

The Houston Cooperative Living Residential Project is established
in Houston, Texas.

1973: The first handicap parking stickers are introduced in
Washington, D.C.
The Architectural and Transportation Barriers Compliance Board
is established under the Rehabilitation Act of 1973 to enforce the
Architectural Barriers Act of 1968.

1974: Halderman v. Pennhurst is filed in Pennsylvania on behalf
of the residents of the Pennhurst State School Hospital. The case,
highlighting the horrific conditions at state "schools" for people
with mental retardation, becomes an important precedent in the
battle for deinstitutionalization, establishing a right to community
services for people with developmental disabilities.
     The first convention of People First is held in Salem, Oregon.
People First becomes the largest U.S. organization composed of
and led by people with cognitive disabilities.
     North Carolina passes a statewide building code with stringent
access requirements drafted by access advocate Ronald Mace. This
code becomes a model for effective architectural access legislation
in other states. Mace founds Barrier Free Environments to advocate
for accessibility in buildings and products.

1975: Congress passes the Developmentally Disabled Assistance
and Bill of Rights Act, providing federal funds to programs serving
people with developmental disabilities and outlining a series of
rights for those who are institutionalized. The lack of an
enforcement mechanism within the bill and subsequent court
decisions will, however, render this portion of the act virtually
useless to disability rights advocates.
     The Education for All Handicapped Children Act (Pub. Law 94-
142) is passed, establishing the right of children with disabilities to
a public school education in an integrated environment. The act is a
cornerstone of federal disability rights legislation. In the next two
decades, millions of disabled children will be educated under its
provisions, radically changing the lives of people in the disability
community.
     The American Coalition of Citizens with Disabilities is
founded. It becomes the preeminent national cross-disability rights
organization of the 1970s.
     The Association of Persons with Severe Handicaps (TASH) is
founded by special education professionals responding to PARC v.
Pennsylvania (1972) and subsequent right-to-education cases. The
organization will eventually call for the end of aversive behavior
modification and the closing of all residential institutions for
people with disabilities.
     The Atlantis Community is founded in Denver as a group
housing program for severely disabled adults who, until that time,
had been forced to live in nursing homes.
     Mainstream: Magazine of the Able-Disabled begins publication
in San Diego.
     Edward Roberts becomes the director of the California
Department of Rehabilitation. He moves to establish nine
independent living centers across that state, based on the model of
the original Center for Independent Living in Berkeley. The
success of these centers demonstrates that independent living can
be replicated and eventually results in the founding of hundreds of
independent living centers all over the world.

1976: Passage of an amendment to Higher Education Act of 1972
provides services to physically disabled students entering college.
The Disability Rights Center is founded in Washington, D.C.
Sponsored by Ralph Nader's Center for the Study of Responsive
Law, it specializes in consumer protection for people with
disabilities.

1977: President Jimmy Carter appoints Max Cleland to head the
U.S. Veterans Administration, making Cleland the first severely
disabled (as well as the youngest) person to fill that position.
The White House Conference on Handicapped Individuals brings
together 3,000 disabled people to discuss federal policy toward
people with disabilities. This first ever gathering of its kind results
in numerous recommendations and acts as a catalyst for grassroots
disability rights organizing.
     Passage of the Legal Services Corporation Act Amendments
adds financially needy people with disabilities to the list of those
eligible for publicly funded legal services.

1978: Disability rights activists in Denver stage a sit-in
demonstration, blocking several Denver Regional Transit Authority
buses to protest the complete inaccessibility of that city's mass
transit system.
     Title VII of the Rehabilitation Act Amendments of 1978
establishes the first federal funding for independent living and
creates the National Council of the Handicapped under the U.S.
Department of Education.
     On Our Own: Patient Controlled Alternatives to the Mental
Health System is published. Written by Judi Chamberlin, it
becomes a standard text of the psychiatric survivor movement.

1979: Funding of the first ten independent living centers funded
through the Rehabilitation Act.
     The U.S. Supreme Court, in Southeastern Community College
v. Davis, rules that, under Section 504 of the Rehabilitation Act of
1973, programs receiving federal funds must make "reasonable
modifications" to enable the participation of otherwise qualified
disabled individuals. This decision is the Court's first ruling on
Section 504, and it establishes reasonable modification as an
important principle in disability rights law.
     Marilyn Hamilton, Jim Okamoto and Don Helman produce
their "Quickie" lightweight folding wheelchair, revolutionizing
manual wheelchair design.
     The Disability Rights Education and Defense Fund (DREDF) is
founded in Berkeley, California, becoming the nation's preeminent
disability rights legal advocacy center and participating in much of
the landmark litigation and lobbying of the 1980s and 1990s.
     Self Help for Hard of Hearing People, Inc., is founded in
Bethesda, Maryland, by Howard "Rocky" Stone.

1980: The first issue of the Disability Rag (now Ragged Edge) is
published in Louisville, Kentucky.
     Disabled Peoples' International is founded in Singapore, with
the participation of advocates from Canada and the United States.

1981: The International Year of Disabled Persons begins with
speeches before the United Nations General Assembly. During the
year, governments are encouraged to sponsor programs bringing
people with disabilities into the mainstream of their societies.
In an editorial in the New York Times, Evan Kemp, Jr., attacks the
Jerry Lewis National Muscular Dystrophy Association Telethon,
writing that "the very human desire for cures can never justify a
television show that reinforces a stigma against disabled people."

1981-1984: The parents of "Baby Doe" in Bloomington, Indiana,
are advised by their doctors to deny a surgical procedure to
unblock their newborn's esophagus because the baby has Down
syndrome. Although disability rights activists try to intervene,
Baby Doe starves to death before legal action can be taken. The
case prompts the Reagan administration to issue regulations calling
for the creation of "Baby Doe squads" to safeguard the civil rights
of disabled newborns.
     The Telecommunications for the Disabled Act mandates
telephone access for deaf and hard-of-hearing people at important
public places, such as hospitals and police stations, and that all
coin-operated phones be hearing aid-compatible by January 1985.
It also calls for state subsidies for production and distribution of
TDDs (telecommunications devices for the deaf), more commonly
referred to as TTYs.
     The National Council on Independent Living is formed to
advocate on behalf of independent living centers and the
independent living movement.

1983: The Disabled Children's Computer Group (DCCG) is
founded in Berkeley, California.
     Ed Roberts, Judy Heumann and Joan Leon found the World
Institute on Disability in Oakland, California.
     American Disabled for Accessible Public Transit (ADAPT) is
organized at the Atlantis Community headquarters in Denver,
Colorado. For the next seven years ADAPT conducts a civil
disobedience campaign against the American Public Transit
Association (APTA) and various local public transit authorities to
protest the lack of accessible public transportation.
     The United Nations expands the International Year of Disabled
Persons into the International Decade of Disabled Persons, to last
from 1983 to 1992.

1984: George Murray becomes the first wheelchair athlete to be
featured on the Wheaties cereal box.
     The Voting Accessibility for the Elderly and Handicapped Act
mandates that polling places be accessible or that ways be found to
enable elderly and disabled people to exercise their right to vote.
Advocates find that the act is difficult, if not impossible, to
enforce.

1985: Wry Crips, a radical disability theatre group, is founded in
California.
     The U.S. Supreme Court rules, in City of Cleburne v. Cleburne
Living Center, that localities cannot use zoning laws to prohibit
group homes for people with developmental disabilities from
opening in a residential area solely because its residents are
disabled.
     The National Association of Psychiatric Survivors is founded.
Mental Illness Bill of Rights Act is passed.

1986: The Air Carrier Access Act is passed, prohibiting airlines
from refusing to serve people simply because they are disabled and
from charging them more for airfare than non-disabled travelers.
     The National Council on the Handicapped issues Toward
Independence, a report outlining the legal status of Americans with
disabilities, documenting the existence of discrimination and citing
the need for federal civil rights legislation (what will eventually be
passed as the Americans with Disabilities Act of 1990).
     Concrete Change, a grassroots organization advocating for
accessible housing, is organized in Atlanta, Georgia.
The Protection and Advocacy for Mentally Ill Individuals Act is
passed, setting up protection and advocacy agencies for people who
are in-patients or residents of mental health facilities.
     The Society for Disability Studies is founded.
     The Rehabilitation Act Amendments of 1986 define supported
employment as a "legitimate rehabilitation outcome."

1987: Marlee Matlin wins an Oscar for her performance in
Children of a Lesser God.
     The AXIS Dance Troupe is founded in Oakland, California.
     The US. Supreme Court, in School Board of Nassau County,
Fla. v. Arline, outlines the rights of people with contagious
diseases under Title V of the Rehabilitation Act of 1973. It
establishes that people with infectious diseases cannot be fired
from their jobs "because of prejudiced attitude or ignorance of
others."

1988: Students at Gallaudet University in Washington, D.C.,
organize a week-long shut-down and occupation of their campus to
demand selection of a deaf president after the Gallaudet board of
trustees appoints a non-deaf person as president of the university.
On March 13, the Gallaudet administration announces that I. King
Jordan will be the university's first deaf president.
     The Technology-Related Assistance Act for Individuals with
Disabilities is passed, authorizing federal funding to state projects
designed to facilitate access to assistive technology.
     The Fair Housing Amendments Act adds people with
disabilities to those groups protected by federal fair housing
legislation and establishes minimum standards of adaptability for
newly constructed multiple-dwelling housing.
     Congress overturns President Ronald Reagan's veto of the Civil
Rights Restoration Act of 1987. The act undoes the Supreme Court
decision in Grove City v. Bell and other decisions limiting the
scope of federal civil rights law, including Section 504 of the
Rehabilitation Act of 1973.

1989: The Center for Universal Design (originally the Center for
Accessible Housing) is founded by Ronald Mace in Raleigh, North
Carolina.
     Mouth: The Voice of Disability Rights begins publication in
Rochester, New York.

1990: The Americans with Disabilities Act is signed by President
George Bush on July 26 in a ceremony on the White House lawn
witnessed by thousands of disability rights activists. The law is the
most sweeping disability rights legislation in history, for the first
time bringing full legal citizenship to Americans with disabilities.
It mandates that local, state, and federal governments and programs
be accessible, that businesses with more than 15 employees make
"reasonable accommodations" for disabled workers, that public
accommodations such as restaurants and stores make "reasonable
modifications" to ensure access for disabled members of the
public.  The act also mandates access in public transportation,
communication and other areas of public life.
     The Ryan White Comprehensive AIDS Resources Emergency
Act is passed to help localities cope with the burgeoning
HIV/AIDS epidemic.
     With passage of the Americans with Disabilities Act, American
Disabled for Accessible Public Transit (ADAPT) changes its focus
to advocating for personal assistance services and changes its name
to American Disabled for Attendant Programs Today.
     The Education for All Handicapped Children Act is amended
and renamed the Individuals with Disabilities Education Act
(IDEA).

1991: Jerry's Orphans stages its first annual picket of the Jerry
Lewis Muscular Dystrophy Association Telethon.

1993: Robert Williams becomes commissioner of the
Administration on Developmental Disabilities, the first
developmentally disabled person to hold that post.

1995: Justice for All is founded in Washington, D.C.
When Billy Broke His Head... and Other Tale of Wonder premiers
on PBS. The film is, for many, an introduction to the concept of
disability rights and the disability rights movement.
     The American Association of People with Disabilities is
founded in Washington, D.C.
     The U.S. Court of Appeals for the Third Circuit, in Helen L. v.
Snider, rules that the continued publicly funded institutionalization
of a disabled Pennsylvania woman in a nursing home, when not
medically necessary and where the state of Pennsylvania could
offer her the option of home care, is a violation of her rights under
the Americans with Disabilities Act of 1990.
     Sandra Jensen, a member of People First, is denied a heart-lung
transplant by the Stanford University School of Medicine because
she has Down syndrome. After pressure from disability rights
activists, administrators there reverse their decision, and, in
January 1996, Jensen becomes the first person with Down
syndrome to receive a heart-lung transplant.

1996: Not Dead Yet is formed by disabled advocates to oppose
Jack Kevorkian and the proponents of assisted suicide for people
with disabilities.
     Sen. Robert Dole becomes the first person with a visible
disability since Franklin Roosevelt to run for president of the
United States. Unlike Roosevelt, he publicly acknowledges the
extent of his disability. He is defeated by incumbent Bill Clinton.
Disabled Persons' Independence Movement--Oral History of the
Berkeley Movement is funded by the National Institute on
Disability Research and Rehabilitation.

1999: Jack Kevorkian is sentenced for murder. He has been a
proponent for and a practitioner of what is called "physician-
assisted suicide."
     About 50 disability advocates gathered in Louisville, KY, to
discuss methods to bring disability issues more effectively to the
media at the 1999 May Media Meeting.
     Very Special Arts changes its name to VSA Arts.
     Groups from all over the United States are planning Spirit of
ADA, to celebrate the 10th anniversary of the signing of the ADA,
25th anniversary of IDEA, 25th anniversary of the American
Coalition of Citizens with Disabilities (ACCD) and the 50th
anniversary of Arc.

----------
End of Document


VICUG-L is the Visually Impaired Computer User Group List.
To join or leave the list, send a message to
[log in to unmask]  In the body of the message, simply type
"subscribe vicug-l" or "unsubscribe vicug-l" without the quotations.
 VICUG-L is archived on the World Wide Web at
http://maelstrom.stjohns.edu/archives/vicug-l.html