Freedom of Movement
Independent Living History and Philosophy
Steven E. Brown, Institute on Disability Culture
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
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
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
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
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
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 contended 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-
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
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
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
BUILDING PLANKS TO ROLL ON: THE GREAT EXPERIMENT AT THE UNIVERSITY
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
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
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
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 dimensions 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
The seminal research which led to the development of the first
architectural accessibility standards that would become the
American National Standards Institute Standards
The first wheelchair accessible fixed route bus system
The first accessible university residence halls
The first university service fraternity and advocacy group
comprised of students with disabilities (Delta Sigma Omicron)
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
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
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
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
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
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
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
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.
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
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 . . .";
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;
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
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
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
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
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
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 one program" (Levy
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
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.
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
The importance of persuading the mainstream media to understand
our issues from our perspective.
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.
A comprehensive history of our movement and its importance
written by one of us!
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,
Hartman, Tari Susan. "If Heaven Isn't Accessible, God is in
Trouble," Incitement (ADAPT Newsletter) 9.1 (Jan./Feb. 1993):
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):
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.:
Pelka, Fred. The ABC-CLIO Companion to the Disability Rights Movement.
Santa Barbara, CA: ABC-CLIO Inc., 1997
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,
SELECTED SIGNIFICANT DATES IN INDEPENDENT LIVING HISTORY
(for a more comprehensive list see: http://www.sfsu.edu/~hrdpu/chron.htm)
Pelka, Fred. The ABC-CLIO Companion to the Disability Rights Movement.
Santa Barbara, CA: ABC-CLIO Inc., 1997
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
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
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
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
1945: President Harry Truman signs a joint congressional resolution
calling for the creation of an annual National Employ the Handicapped
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
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
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
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,
The Houston Cooperative Living Residential Project is established
in Houston, Texas.
1973: The first handicap parking stickers are introduced in Washington,
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
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
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
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
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
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
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
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
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
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
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
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
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
1996: Not Dead Yet is formed by disabled advocates to oppose Jack
Kevorkian and the proponents of assisted suicide for people with
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
1999: Jack Kevorkian is sentenced for murder. He has been a proponent
for and a practitioner of what is called "physician-assisted
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
2323 S. Shepherd, Suite 1000
Houston, TX 77019
IL NET Director:
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.
This guide may be reproduced for noncommercial use without
prior permission if the author and ILRU are cited.