"Strength does not come from physical capacity.
It comes from an indomitable will."
~ Mahatma Gandhi
I had rather be blind than to have sight with no vision.
~Helen Keller
"Every step toward the goal of justice requires sacrifice, suffering, and struggle;
the tireless exertions of dedicated individuals."
- Rev. Martin Luther King, Jr.
INDEPENDENT LIVING PHILOSOPHY
Several fundamental beliefs have been combined to establish the foundation on which to construct an independent living philosophy. These premises include the notion that each individual is different and unique; that people with disabilities are the most knowledgeable experts about our own needs and issues; and that programs serving disabled people should be designed to serve all disability groups.
Just as every person is different from each other, so too are disabling conditions. This applies not only to the differences between differing disabilities, such as deafness and mental illness and paralysis, but also to individual differences within each disability category.
For example, each person with a disability who uses a wheelchair is unique. Some people using wheelchairs are paralyzed, others are not. Some use their feet, but not their arms; others their arms, but not feet. Some wheelchair users use their breath to move their chair, others their head.
The point is that just as each wheelchair must be designed to fit the individual needs of the person using that mobility aid, so too must every other adaptation be adjusted to the individual. To make this equation just a little more complicated, disabling conditions, like people, are often dynamic, not static. So the results of the disabling condition itself are often changing and, to return to the example of wheelchairs, an individual who uses a certain kind of wheelchair one year may need a different kind the next so that there is a constant adjustment to the changing conditions of the disability or, even more salient, to the changing conditions of life.
Every individual and every disability condition is different, therefore every individual with a disabling condition is unique. People who are most familiar with disabilities, that is, those who have them, are best-suited to discuss the needs and issues of people with disabilities. This is not to say that a person without a disability is incapable of knowing, understanding, or empathizing with what it is like to have a disability. But it is to say that it's much more likely for a person with a disability to possess these characteristics.
The notion of one person with a disability having some understanding of another person with a disability forms a primary underpinning of independent living philosophy, which is the concept of peer support. In independent living terms, a peer is someone with a disability who is a role model and/or support person for another person with a disability. Translated to other movements, it is the same concept that drives Alcoholics Anonymous and all the other anonymous self-help programs. It drives the concept of groups as institutionalized as the YW and MCAs and of groups as historically radical as the Black Panthers.
The ideas of peer support and people with disabilities knowing what is best for ourselves leads directly into the concept of people with disabilities running our own programs. That is why many independent living programs require boards of directors to have at least a majority of their members be people with disabilities.
But there is another very important reason for people with disabilities managing their own programs. This is the whole issue of empowerment. For someone who is not empowered, and as a group people with disabilities are not, it is of utmost importance that power positions, such as boards of directors, can be perceived as role models.
A useful analogy is that of Women's Resource Centers. Few people would argue that men should run programs for women. Men are not women and no matter how hard we may try there are just some things that men will never be able to have in common with women. So it makes sense for women to be the primary participants in running programs designed for women. Now just plug in the phrase "people with disabilities" for women in the preceding three sentences.
Substitute "nondisabled people" for men in the same sentences. See if it makes sense. If it does, then one has just agreed with one of the basic philosophies known in independent living jargon as "consumer control," that is people with disabilities as the consumers of programs designed for them also ought to be the principal players involved in their direction and management.
The final philosophical framework of independent living programs is that they should be designed to serve all disability groups. This may be the most controversial of the independent living beliefs. Many population groups--including people with hearing impairments, visual impairments, brain injuries, mental retardation, psychiatric disabilities, and probably any other disability demographic population identified--have stated at one time or another that separate services are necessary for their specific conditions.
Proponents of the independent living philosophy known as cross-disability counter that all people with disabilities are oppressed and that there is little difference in the big picture of the discrimination against people with disabilities. To paraphrase a well-known quote: oppression is oppression is oppression.
Cross-disability advocates will agree that there may be different tools to use toward the overarching goal of independence. For example, a deaf person may need sign language for communication and a person with a head injury may need a tape recorded reminder to do a task and a person whose legs don't work well may need a wheelchair. But beyond the necessity of different tools is the common goal of an opportunity for full participation in the cultural, social, economic and political aspects of our society.
The driving beliefs of independent living philosophy are a recognition that each person with a disability, like each person, is unique; that because of this uniqueness people with disabilities are in the best position to guide, direct, and control their own programs; and that because all people with disabilities are oppressed, independent living programs need to be designed to ensure equal social, cultural, economic, and political opportunities for all disability groups. (Brown, Independent Living 2-5)
In the next section, we'll look at the life of FDR to consider if he might be called a predecessor of the disability rights movement. To put it another way, could FDR have been considered, "a peer. . . someone with a disability who is a role model and/or support person for another person with a disability."
WAS HE OR WASN'T HE?
FDR grew up in a wealthy, civic-minded family in New York State. A personable and vigorous young man, he followed the path of his cousin, President Theodore Roosevelt, first in joining the Navy, then in quickly becoming a successful politician. Unlike his older cousin, FDR's first Presidential election was a losing one as the Vice-Presidential candidate of the 1920 Democratic slate. Shortly thereafter, his political future unclear, he contracted polio. Both his legs became permanently paralyzed and he became a wheelchair-user. FDR's wealth and contacts enabled him to pursue physical rehabilitation anywhere he chose. He selected Warm Springs, Georgia. He poured much of his energy and wealth into building a modern rehabilitation facility there.
For many years, historical accounts of FDR's polio treated it as a brief and isolated incident in his life which probably proved to his political benefit. These narratives contend that voters felt distanced from the healthy and wealthy FDR. But polio became a great equalizer. It demonstrated that even someone with FDR's breeding and riches could be brought down a notch or two and in so doing would become more appealing to the voters who would elect him. In addition, FDR turned to his wife Eleanor, whose compassion is now legendary, to keep him in touch with everyday issues and the average citizen. Finally, his long recovery enabled him to write many
letters, entertain visitors, and make numerous contacts in a concerted effort to reenter the political scene. He did so with great success. FDR was elected governor of New York in the latter part of the 1920s, setting the stage for his quest to become President.
Hugh Gregory Gallagher eloquently opposes this traditional narrative in his groundbreaking study FDR's Splendid Deception. He argues that this typical portrayal of a short bout with polio contains little understanding of disability and its long-range effects.
FDR took great pains to hide the extent of his disability from the public. While the polio virus itself had disappeared and the consequent impairments did not technically make FDR "sick," that was how both he and the American public viewed disability. FDR fit the classic description of an invalid.
The word invalid describes someone who is incapable of caring for themselves. Although illness or sickness is not necessarily a permanent aspect of disability, it is an inherent concept of invalidism. Since no distinction was made between an invalid and a disabled person, that individual was considered to be sick.
FDR refused to let that mistaken perception prevent him from resuming his political career. The course he chose was to convince the American public that he was neither sick nor in-valid, and therefore not disabled in its classic sense. If he could persuade the American public that he was still healthy and vigorous, then they would believe that FDR could fulfill the duties of public office. To fool the American public into believing that polio had only done minimal physical damage required elaborate, conscious planning, massive assistance, and--from today's vantage-- unbelievable media corroboration.
When FDR appeared in public he did not use his wheelchair. He rose from a seated position using braces and crutches. He was not stable or graceful. Aides held him up creating an illusion that FDR walked without assistance. Crowds "witnessed" FDR walking from his seat to a podium or some other device that he could stand and lean against. Rather than appearing as a sickly invalid, FDR gave the appearance of a healthy politician.
The media supported FDR's efforts to hide the extent of his disability. By conscious yet informal agreement, radio, newspaper and film correspondents simply did not discuss FDR's paralysis. Thirty-five thousand photographs were shot of FDR as President, but only two show him seated in his wheelchair, and these were never published (Hevey 102). This conspiracy of image makers extended as far as political cartoonists who would never draw FDR in his wheelchair, but always standing or walking--or running, or flying!
Although many Americans knew on some level that FDR used a wheelchair, the disguise was so successful that many other Americans professed their ignorance of his disability. As recently as the mid-1990s, this author encountered an individual working at an independent living center who yelped with astonishment upon learning that FDR had a disability. According to Gallagher, this was FDR's "splendid deception" because it enabled him to rise to the Presidency during a time in which everyone was convinced that no one with such a disability could even aspire to that position.
What did FDR's cloaking of his paralysis and wheelchair use mean for people with disabilities? The conclusions are diverse and murky. For many people with disabilities, FDR was a hero, a person who had overcome his disability and acquired the nation's most coveted office. He developed Warm Springs into an international rehabilitation facility. There he drove his car with hand controls that some credit as the first ever designed. Even some people who do not like what FDR did to gain the Presidency believe that he had no choice: given the climate of the times he was forced to hide his disability to succeed politically. Others bemoan his massive cover-up, suggesting this meant that FDR, too, harbored his generation's beliefs about disability meaning illness and invalidism. He was unable to take his own personal situation and generalize it to others in similar circumstances. This, some argue, not only demonstrates FDR's acceptance of disability as illness, but it also contributed to future generations harboring those same beliefs. But, as we will see in the next section, FDR's ambivalence about disability not only affected future generations, but had a significant impact on people who might have been called his peers. (Brown Investigating 42-45)
THE LEAGUE OF THE PHYSICALLY HANDICAPPED
The example of the New York League of the Physically Handicapped, rediscovered by historian Paul Longmore in the late 1980s, demonstrates why many people have difficulty portraying FDR as a champion of disability rights. Like Longmore and FDR, most League members had contracted polio, though a few had cerebral palsy, tuberculosis or heart conditions. Unlike FDR, none used wheelchairs. League members came together because they believed they faced discrimination from private industry. They thought that New Deal policies, the name for the programs that FDR spearheaded to combat the Great Depression, would assist their quest for equitable employment. Instead, New Deal programs classified them as "unemployable."
Six League members went to a New York City agency in May of 1935 to discuss these discriminatory policies. When told the individual they wanted to see was out of town, some League members refused to leave. They had not planned to demonstrate, but that is what they did. Three League members remained in the building for nine days. Picketers with and without disabilities supported them outside of the building. Following three weeks of these protests, the group decided to organize formally.
Six months later, in November of 1935, they conducted a three week picket at the New York headquarters of the Works Progress Administration (WPA), one of the primary New Deal agencies for employment. They demanded that, "handicapped people receive a just share of the millions of jobs being given out by the government." As a result, the WPA hired about forty League members. Some skeptical League members believed this action was taken to squash the group, but instead it gained momentum.
In May 1936, a year after their first action, League members traveled to Washington, D.C., to meet with WPA leader Harry Hopkins. When they were informed that he was "away," they voted to stay until "Mr. Hopkins does see us."
Three days later Hopkins did meet with the group. He informed them that he didn't believe there were as many employable New Yorkers with disabilities as the League contended. He also said that he wouldn't change his mind unless he saw an analysis that disproved his belief. Then, he promised, he would take action immediately to correct these conditions.
Several months later, the League presented Hopkins with its "Thesis on Conditions of Physically Handicapped," a ten-page document that offered a comprehensive analysis of the situation. The "Thesis" described job discrimination in private and public sectors and recommended preferential civil-service hiring of disabled veterans and handicapped civilians as well. It also criticized public and private vocational rehabilitation as being underfunded and inadequate. Other employment programs the League critiqued as guilty of worse crimes: sending people to demeaning jobs, including ones as strike-breakers. The League's "Thesis" also accused New Deal programs of ignoring the problems of people with physical disabilities and categorizing people with disabilities as "unemployable."
Betraying his word, Hopkins ignored the "Thesis." The League, dissatisfied with its Washington experiences, renewed its concentration on its New York activities.
In September 1936, the League joined forces with the League for the Advancement of the Deaf to secure a promise that 7% of future WPA jobs in New York would go to deaf and handicapped individuals. As a result, 1500 people went to work. Unfortunately, more than 600 lost their jobs the next spring during nationwide lay-offs.
The League's experiences with New York's WPA was indicative of both its successes and failures. On the positive side, the League did get a number of people jobs and open the public sector to some workers with disabilities. It did not, however, as it had hoped, alter federal policies towards people with disabilities working.
In looking at the history of independent living, the League did not establish a base for future activism. But it did bring to the limelight in the 1930s some issues that would be addressed later in the 1970s and 1980s. League tactics will also seem similar to some current disability protests. Finally, and maybe most importantly, the League identified social problems plaguing people with disabilities that still remain with us.
League picket signs included ones that said, "We Don't Want Tin Cups," and "We Want Jobs." The first could be said to pre-date the current movement against telethons. The second could still be used to protest the current more than 70% unemployment rate of people with disabilities (Longmore and Goldberger 94-98; Longmore, personal communication).
WORLD WAR II VETERANS
Wars always impact disability. If nothing else, wars increase our numbers. There is also often a parallel between war and advances in medicine. An example from World War II (WWII) is that before antibiotics and treatments developed during the war to prevent decubitus ulcers, 80% of those who acquired spinal cord injuries died during the acute phase of their medical care (DeLoach 37).
In the twentieth century, wars have also accelerated disability policies. Both the Paralyzed Veterans of America and the President’s Committee on Employment of the Handicapped began shortly after World War II ended. Veterans also benefited after World War II from PL 702, housing legislation passed in 1948 to provide veterans with service-connected disabilities a $10,000 grant in addition to a $10,000 loan to purchase, build, or modify a house (DeLoach 37-38).
Veterans, seeking social reintegration, had significant local impacts. Veterans also had a profound influence on the roots of independent living. In Los Angeles, for example, four WWII veterans began classes at UCLA in 1946 where they were assisted by CAL-VETS, a group of volunteers who carried the vets into inaccessible buildings (DeLoach 37). Our story continues with veterans in the small Midwestern towns of Kalamazoo, Michigan, and Champaign-Urbana, Illinois.
FREEDOM OF MOVEMENT
Jack Fisher was born on September 17, 1918, in Kalamazoo. He learned about the bombing of Pearl Harbor in December 1941 when he was nine months away from graduation at Harvard Law School. Unwilling to continue at Harvard after the bombing, he left school and enlisted in the army. While serving in Oklahoma, he received injuries in a jeep accident in 1943. He was sent from Tinker Field, a US Air Corp Base in the Oklahoma City area, about fifty miles southwest to Borden General Hospital in Chickasha, which housed a special orthopedic unit. Beds there were arranged head to toe so that no one breathed on someone else. The ward he stayed on was for people confined to bed. He remained there from October to February.
For more than four months he roomed with 40 non-ambulatory patients. While lying in a full body cast and traction, he leafed through the medical records of other patients to keep busy. This engrossed him during the day so he could sleep at night. At his discharge in February 1944, Fisher wore steel braces from hips to neck and walked with a pronounced limp.
While continuing to recuperate and learning to live with his residual physical problems, Fisher, at the age of twenty-five, returned to Kalamazoo. He would not return to Harvard Law School while the war waged on. He was determined to obtain a job in a defense industry. While trying to get a job, he kept getting told that with his braces and spastic right leg he could not be used, not even for the lowest possible clerkship. Companies were afraid he'd fall and puncture a lung, risking worker's compensation claims. He was even rejected at Kalamazoo's biggest defense company where he knew the personnel director.
At this point the Disabled American Veterans (DAV) contacted Fisher. The DAV informed Fisher that they needed his help. About five hundred (500) disabled veterans had submitted claims to
obtain medical services, financial compensation, wheelchairs, rehabilitation and more. Their files were waiting to be processed. Fisher facilitated hundreds of claims between February 1944 and August 1944 when he finally returned to Harvard Law School.
Fisher graduated from Harvard Law School in February 1945. Large and prestigious eastern firms generally sought Harvard graduates. Fisher's experience was different. Although he had graduated in the top third of his class, he encountered two forms of discrimination. Some firms refused to hire him stating that his disabilities and braces made him a poor risk for health and additional injuries; others would not hire him because he was Jewish.
He decided to begin his own practice. From the first day, disabled veterans whom Fisher had previously assisted retained him as their attorney. He remembers his practice looked like an emergency room, with clients using crutches, wheelchairs and other adaptive equipment. These disabled veterans also brought their parents, grandparents, aunts, uncles, siblings and friends. He worked on all kinds of problems from purchasing real estate to wills, business ventures, leases, marital concerns and more. Fisher was immersed in the lives of individuals with disabilities as fellow veterans, friends, acquaintances and clients. He learned about the problems of access, mobility, employment, the bedroom and the bathroom.
Fisher journeyed the short distance from Kalamazoo to Percy Jones Hospital in Battle Creek (the old Kellogg sanitorium featured in the movie The Road to Wellville) because it was the official government hospital to treat and rehabilitate amputees. A huge number of both above and below the knee amputees resided in Battle Creek. Many would travel the short distance to Kalamazoo for the bigger city's more active social life. It was not uncommon to see many people using prostheses. Unfortunately for those going downtown, Kalamazoo had quite tall curbs and people would fall on them breaking stumps and injuring themselves. Wheelchair users were simply unable to travel downtown.
In 1945, Fisher took it upon himself to get curb cuts and side-pipe rails. He petitioned the Kalamazoo city commission and testified before them. The city manager, whose adult son used a wheelchair, understood the problem firsthand. The city commission authorized the construction of cement ramps with safety rails in the central business district. Test ramps were constructed in 1945 and placed at the corners of three or four blocks.
A local DAV chapter monitored their usage. In a March 1946 letter to the mayor, Fisher stated that the "ramps were instrumental in allowing disabled veterans, disabled non-veterans, aged and infirm persons and mothers with baby carriages more freedom of movement..." and that "These cement ramps in many instances mean the difference between disabled veterans and disabled
non-veterans having employment, as with the ramps a person confined to a wheelchair, on crutches or wearing an artificial limb is able to get to a place of employment unaided. The ramps thus enable many so called unemployable persons to become employable persons, and not only benefit the disabled person alone, but benefit the community at large as well."
Kalamazoo's city commission responded to the experiment by becoming the first city government known to approve a curb cut program, appropriating $680 to install 34 additional curb cuts (Brown, "The Curb Ramps of Kalamazoo").
BUILDING PLANKS TO ROLL ON:
THE GREAT EXPERIMENT AT THE UNIVERSITY OF ILLINOIS
While Jack Fisher worked to implement curb cuts in Kalamazoo, other firsts were taking place in Illinois. In the 1947-48 academic year, a former Veterans Administration Hospital in Galesburg, Illinois, was converted into a satellite campus of the University of Illinois. The University took this action to accommodate the many World War II veterans seeking to utilize the funding of the GI Bill to earn their college degrees.
A year later, however, in 1949, it was decided that the Galesburg campus would be closed. The program's director, Timothy Nugent, appealed unsuccessfully to hundreds of other universities and colleges to adopt the program. There were no takers. Unwilling to accept defeat, Nugent and the students loaded into several cars and set off for the state capitol in Springfield to request that Governor Adlai Stevenson intervene to stop the closure. They staged protests that included building temporary ramps from wooden planks to show how easy it would be to accommodate wheelchairs.
Their effort did not succeed. The campus closed. The students refused to give up. They continued their self-advocacy by seeking to move the "Rehab Program," as they called it, to Champaign-Urbana. Support for the continuation of the program at the main campus was minimal. Most administrators believed that individuals with severe physical disabilities could not possibly live "normal" lives, could not have families and could not obtain gainful employment. Why boost their hopes with a prestigious University of Illinois degree?
The experiment might have ended then except the same group of students with disabilities took their show on the road to Champaign-Urbana. Their goal in traveling to the main campus was to demonstrate that, with minimal architectural and personal assistance, they could successfully negotiate the campus and that they were more than equal to the challenge of the institution's academic programs. After a day of demonstrations, the university begrudgingly granted provisional or "experimental" status to the rehabilitation program at Champaign-Urbana. Attitudes about disability at the university were vehemently expressed. A father of a non-disabled woman dating a post-polio law student despaired that, "I suppose the University should receive some credit for trying to help these poor unfortunates, but isn't there something you can do to protect our sons and daughters from these freaks?" (Expanding Horizons, ii)
The university, wary about the program, limited the number of students that could be admitted--refusing 15 students for every one who got in. For its first eight years the program received no university funding. Nugent drummed up money from outside sources. Students continued to advocate for themselves by demonstrating their abilities through a myriad of activities, research about disability issues and athletic exhibitions ("History of the Division of Rehabilitation").
Campus buildings were not access-friendly. Quonset huts, remaining from World War II, were used as dorms for the first group of students. Campus legend says the huts were unheated with beds in a row, just like the military. The huts were later converted to house the rehab program's administration offices. They also contained a physical therapy room for students who received credit for physical education classes by participating in PT (Breslin).
After large numbers of people with mobility impairments were admitted, the university ramped buildings and modified the World War II Quonset huts. As new dormitories were built, a limited number of rooms in each building were designed to accommodate students with disabilities. The first floor of most dorms had bathrooms with accessible shower stalls that had aluminum fold down seats and accessible toilet stalls (in the old style--with a door wide enough to face the toilet in the forward position and grab bars). Alumna and contemporary disability advocate Mary Lou
Breslin recalls that these dorm rooms were identical to those on the upper floors, which could be reached by elevator in most cases, so the real access was to the first level itself (elevator or ramp) and bathrooms.
The program offered disabled students medical services, physical and occupational therapy, prosthetics, counseling, recreation and a bus service. By the mid-1950s, the Rehabilitation-Education Program (DRES) provided support services and had several lift-equipped buses that made hourly trips around the campus, town and to special university events.
In 1954, a politically savvy group of students with disabilities succeeded in getting Illinois Governor William Stratton to serve as the keynote speaker at the annual disabled students' awards banquet. Although the banquet had not previously been attended by University administrators, the Governor's appearance packed the house. That evening, Governor Stratton gave a stirring speech on the benefits of rehabilitation and the importance of the effort being developed at Illinois. From that point on, although many battles would have to be fought and won in the war for egalitarian access, the program's legitimacy was never again seriously questioned ("History").
The Illinois program expanded to include non-veterans in the 1950s and offered accessible transportation; housing to undergraduate, graduate and married students; peer counseling; specialized medical care; individually designed assistive devices and ADL training (DeLoach 41).
The folklore of the Illinois program is that it equated independence with a physically self-reliant lifestyle. No students could live in university housing if they could not move about campus or had to request help from someone else in self-care activities. Students were required to come to campus early for a week of "functional training." If students could not transfer in and out of bed, dress, bathe and toilet themselves, or maneuver, in their manual wheelchairs, up and down ramps and to the bus stops by themselves in a reasonable amount of time, they were rejected, sent home, invited to practice their skills and reapply. The memory of one student contradicts this well-known folklore. "In fact, some students who couldn't really do these things did occasionally get admitted. One I remember vividly died of complications of muscular dystrophy. I have always thought it was because he had to struggle so to move about in the freezing weather" (Breslin). Students who successfully completed this training could still be expelled later if they were discovered receiving assistance in their living quarters or being pushed across campus (DeLoach 41-42).
By the early to mid-60s there were about 200 students, with one or two with communication disabilities. "When I was there [there were] several severely disabled students, i.e. high quads or very weak folks with MD who lived in a nearby nursing home, which was then believed to be the only appropriate way to provide personal care for such individuals. Several used power chairs, though the technology was primitive. The obvious point was nursing care was the only answer to not being able to do self care unaided. This practice ended at some point after I graduated" (Breslin).
Perhaps the most popular activities were sports--wheelchair basketball and track, judo for the blind, quadriplegic rugby. Sports, Nugent believed, boosted the athletes' self-confidence and dispelled the notion that disabled students were frail and sickly (Breslin).
Nugent also "was responsible for drafting the first ANSI standards, originally created around the dimension of Everest & Jennings standard push chairs" (Breslin).
Although not as well known in independent living circles as some other university programs, the University of Illinois claims the following firsts:
· 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 ("History")
With all these advances, why is it that disability advocates tend to recall the University of California as the trailblazer for disability programs? That is the subject of the next section.
POLIO AND THE ED ROBERTS STORY
Veterans inspired the curb cuts of Kalamazoo and the changes in the student population at the University of Illinois. Just as medicine increased the longevity and expanded the activities of veterans wounded in the military, medical progress also had enormous consequences for non-veterans. Medical breakthroughs dramatically affected the polio epidemics of the 1940s and 1950s. Unlike FDR, many of these individuals contracted polio at an early age and did not come from wealthy families.
The polio epidemics of the 1940s and 1950s left about 400 people around the country who both used respirators and were institutionalized. One hundred fifty eight of these individuals were housed at Rancho Los Amigos Medical Center near Los Angeles. The March of Dimes paid their bills, but as that organization became increasingly strapped for funds, they turned over this responsibility to Los Angeles County.
The County, in 1953, conducted a study about attendant care costs. The investigation revealed that each iron lung user would cost the county $10 per day if they lived at home. The hospital billed the state $37 per day for identical services. This discovery led to beginning California's In Home Support Services (IHSS) program, one of the nation's first personal assistance programs (Levy 4-5).
At his home in Burlingame, south of San Francisco, a teenager named Ed Roberts, who had contracted polio and used an iron lung, received IHSS. As he grew older he became credited with breaking the barrier against significantly disabled people attending universities. Roberts has been called the Martin Luther King Jr. of the disability rights movement, the father of independent living. Toward the end of his life, he liked to call himself the godfather. Before Roberts passed away in 1995, he conducted many interviews. Many people also viewed Roberts as one of the best public relations persons in independent living. As a result, quite a bit is known about his life. What follows is his story. It is representative of many others.
Roberts contracted polio when he was in high school. As a result of the virus he lost all but some movement of two fingers on his left hand and two toes on his left foot. The rest of his body, including his lungs, remained paralyzed, though he always retained feeling. Unable to breathe on his own for extended periods, he became a ventilator-dependent quadriplegic. He required a machine, such as an iron lung or a ventilator, to assist him with breathing.
The only person in his school to contract polio, Roberts resumed his education at Burlingame High School at the age of eighteen. He attended via a phone hook-up. It began with a phone connected to one room at the high school. When Ed pressed a bar on the phone he could be
heard, when he released the bar he could hear, enabling him not only to listen but to communicate with his classmates.
Roberts graduated from high school, at the age of twenty, in 1959. But not without a fight. His post-polio paralysis prevented him from taking either physical education or driver's education courses. His high school counselor thought Ed should remain in school another year. Zona, Ed's mother, was determined that her boy would be as similar to his peers as possible and was mystified by this turn of events.
Zona contacted the principal about the inequity of the situation. He supported his counselor. Zona next called a friend who also happened to be a school board member. A school representative met with Zona and Ed at their home and asked, "Ed, you wouldn't like a cheap diploma, would you?" A furious Zona contacted the superintendent of schools. She also notified some of Ed's teachers. Before they could act, the assistant superintendent of schools announced that everyone was proud of Ed and granted the diploma. Roberts later commented that he attained some of his own sense of determination from watching Zona persevere about his graduation.
Ed enrolled at the nearby community College of San Mateo. To attend classes he was placed in a corset which enabled him to sit up. A head brace emerged from the back of the corset. At first, Zona brought Ed to campus. They solicited help from passers-by to get Ed in and out of the car on campus, learning to avoid football player types who refused supervision. Ed attended class by himself, with assistance from fellow students to traverse the numerous steps. Another student was eventually hired to drive Ed.
Roberts spent three years at the College of San Mateo, finishing two years of classwork. To complete assignments, Zona wrote while Ed dictated. Ed speculated about a career as a sportswriter. Others discussed technical writing. He eventually chose political science as a major.
The most fortuitous development at the College of San Mateo occurred in Roberts' second semester when he enrolled in an English class taught by Jean Wirth. Jean, like Ed, knew about difference. She had been six feet, five inches tall from the time she was twelve years old. She became his unofficial advisor.
Jean asked Ed where he wanted to continue his education after graduating from the College of San Mateo. He responded UCLA. Roberts knew about the veterans who had attended and he thought that would make it fairly wheelchair-accessible. Jean dissuaded him from this idea because UCLA was a commuter campus. He would have to find housing, transportation, personal assistance, and friends away from the university. She suggested he apply instead to the University of California at Berkeley (UCB) where there was an outstanding political science program. Ed did just that and was accepted at UCB. The application form asked no questions that related to disability. The only hint was that Ed weighed only eighty-five or ninety pounds. Zona accurately predicted that school officials would guess Ed forgot to put a "1" before the other numerals. Ed also applied to the California Department of Rehabilitation (DR) for financial assistance. The DR counselor informed Ed that he was too severely crippled ever to work and would therefore be denied services. Zona, Jean, and Phil Morse, Ed's official advisor at the College of San Mateo, then met with DR to advocate successfully for Ed.
While this was happening, Jean, Zona, Ed and Phil visited the UCB campus prior to the commencement of the school year. UCB personnel were shocked to learn that Ed was a post- polio ventilator-using quadriplegic and were at a loss about where he might be housed. His large iron lung wouldn't fit in a dorm room. Morse contacted the Dean of Men, who suggested they see Henry Bruyn at Cowell Hospital, the on-campus student health center.
Bruyn, a physician, had worked with polios and commented that they were becoming of college age and should be able to attend college. He thought Ed could probably live at Cowell. Successful negotiations to do just that continued throughout the summer.
During Ed's first academic year, 1962-63, the same year that the African-American James Meredith integrated the University of Mississippi, Ed was the only student with a disability at Cowell, and, as far as we know, the first student with a disability of this significance to attend an American university. An area paper ran a story about Ed headlined "Helpless Cripple Goes to School." It caught the attention of a social worker in nearby Antioch whose client, John Hessler, had broken his neck while diving. Towering above six feet tall, he was too big to be cared for by his parents and he lived in a Contra Costa hospital. He attended Contra Costa College, going back and forth by taxi. His social worker spoke with Henry Bruyn, and John joined Ed at Cowell in the 1963-64 school year.
Bruyn began to earn a reputation for this program. Several more students arrived in 1965-66. Their attendance initiated a formal program for students with disabilities. The students began identifying with one another, calling themselves the Rolling Quads. With a nursing supervisor, the Rolling Quads took over the entire third floor of the hospital. Each student lived in his or her own room. They mingled in a common room and ate together in a dining room.
Ed's DR worker in Berkeley, unlike his geographically-appointed counselor in Burlingame, supported his efforts. DR now paid for tuition, books and secretarial help. This changed again in the late 1960s when DR installed a new worker. She believed it was her responsibility to dictate behavior. She attempted to direct Ed's thesis topic, tried to instruct other students in what classes they could take, and strived to get two students evicted because she didn't approve of their educational goals or lifestyles.
The students responded to this counselor with activism. They informed the press of their frustration with her dictatorial methods and succeeded in getting her transferred. This success led to other actions. The Rolling Quads formally organized themselves into a student organization, and as such they developed and taught a university studies class called "Strategies of Independent Living," the main purpose of which was to conceive methods to live outside of Cowell. They began to talk to the Berkeley city council about building ramps in the city. The Rolling Quads got the city's attention when they went out in the middle of the night with their assistants and started taking sledgehammers to some of the curbs around campus and pouring tar on them to create makeshift ramps. Some of these still exist today. The Rolling Quads not only tested their own limits as fledgling citizens, they also began to understand their own power.
By the late 1960s, as the Rolling Quads' activism heated up, Roberts prepared to leave Berkeley. He had completed both undergraduate and graduate school, finishing all but his dissertation. Ed accepted a temporary job at the Disabled Student Services program in Riverside, near Los Angeles.
Before Ed moved, Jean Wirth called Zona from Washington to share information about a bill containing a lot of money for disadvantaged students, with ten percent of the budget earmarked for disability programs. Jean suggested Zona come to Washington for meetings about how to utilize the money, but Zona had a scheduling conflict and recommended Jean call Ed. Ed was agreeable and experienced his first airplane flight. Roberts weathered the first of many adventures traveling as an individual with a disability. First, no breathing apparatus was allowed on the plane, so Ed was forced to do exhausting frog-breathing for hours in the air. Then after landing he sat for hours while they retrieved his manual wheelchair. Jean arrived at the hotel before Ed to arrange for an iron lung to be delivered to the hotel. She learned that an iron lung would not be allowed because "they blow up you know."
Despite these hardships, Roberts loved Washington. He reveled in interacting with Senators and Secretaries, and with time's passage he realized that he made a lasting impression. Since Ed was on his way to his temporary job in Riverside, he urged John Hessler and others to submit a proposal to the old Cabinet Department of Health Education and Welfare (HEW) for funds to institutionalize what they had learned as the Rolling Quads. Their first attempt did not get funded, but their second one did. It became the Physically Disabled Students Program (PDSP).
John Hessler became director of the program. Roberts, meanwhile, did not remain in Riverside long. His physician advised him to leave because the area was harmful to people with breathing problems. He moved to Woodside in the South San Francisco Bay area and began teaching at Nairobi College in East Palo Alto. The college attracted less traditional students than those attending UCB or nearby Stanford.
PDSP began to attract individuals with disabilities from around the San Francisco area. Many callers were not students, but there was nowhere else they could obtain the services they needed. The need to create an organization similar to PDSP for non-students became apparent.
Three people, all of whom had been Rolling Quads, began an organization they called the Center for Independent Living (CIL). A small research and development grant enabled them to rent a small apartment to begin CIL. John Hessler, a CIL board member, quickly became concerned that the much-needed CIL would fail because of a lack of leadership. He contacted Roberts, who had recently returned to Berkeley from Woodside, about his fears.
Ed and John met with their friends to discuss a CIL board take-over. Their strategy succeeded. Roberts then became CIL director because he did not have a job, while Hessler directed PDSP. Ed expanded CIL rapidly and a national, then international, reputation quickly followed.
When Jerry Brown became governor of California in 1974, three of his former law school classmates, who also happened to be friends of Ed's, nominated Ed to become director of the Department of Rehabilitation (DR). Brown interviewed Ed and appointed him DR director in late 1975. Independent living advocates rarely tire of telling the story of Ed becoming the boss of the agency that had once told him he was "too severely crippled" ever to work. (Brown "Zona and Ed Roberts")
As chief of DR, Roberts soon had the opportunity to institute independent living throughout California. In his first year, $500,000 from the state budget set up eleven independent living programs in the state (Kidder, 10). Shortly thereafter, in the debate over amendments to the Rehabilitation Act in 1978, Roberts was one of many who fought to implement independent living centers in the federal budget.
THE INDEPENDENT LIVING MOVEMENT
Because a comprehensive history of the disability rights and independent living movements is still to be written, the story of Ed Roberts is often discussed as the cornerstone of the independent living movement's origins. But just as Ed's story is a tale of many people, so too is that of the independent living movement. Perhaps most telling is the fact that the same year that CIL in Berkeley began operations, so too did Threshold, an independent living center in Helsinki, Finland. And like CIL, Threshold began first as a student movement. When CIL began in the early 1970s, similar organizations sprouted throughout the United States as well as other parts of the world. For example, a group in Boston began the Boston Center for Independent Living (BCIL). Unlike CIL, BCIL focused on housing issues. BCIL provided housing and attendant services to those college students housed on the fourth floor of the theological college at Boston University, and attendants were recruited from theological students (DeLoach 43). BCIL became formally established in 1974. Other groups formed in Houston, Ann Arbor and many other places across the country and around the world.
This was indeed a movement.
In Washington, D.C., Hugh Gregory Gallagher (long before he authored FDR's Splendid Deception) worked in a congressional office. Gallagher became extremely frustrated in trying to use the inaccessible Library of Congress. He authored the Architectural Barriers Act of 1968, which became the first federal legislation to address architectural accessibility. Unfortunately, it would be years before that kind of thinking and legislation would be enforced. But it's another example of the incipient movement.
How the disability rights movement evolved from "helpless cripples" to a political force includes all of the preceding individuals and actions. In addition, numerous policies have affected disability issues. Perhaps the most important in a history of the independent living movement is the story of Section 504 and the Vocational Rehabilitation program.
“WE WILL ACCEPT NO MORE DISCUSSION OF SEGREGATION”
SECTION 504 AND VOCATIONAL REHABILITATION
Many advocates consider Section 504 of the Rehabilitation Act of 1973 the nucleus of all ensuing progress in obtaining disability rights. Section 504 stated:
No otherwise qualified handicapped individual in the United
States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination
under any program or activity receiving federal financial assistance.
This concise paragraph guaranteed disabled individuals specific civil rights for the first time in history. Vocational rehabilitation, however, began in the early twentieth century. What was its purpose? Why was Section 504 so radical? How come many disability advocates consider Section 504 the opening salvo in the battle for modern disability rights? This section provides a brief history of Vocational Rehabilitation from its beginnings until the early 1970s when the discussion shifts to the campaign to implement Section 504.
Vocational rehabilitation, like many other government programs, did not develop in a vacuum. In fact, it was a culmination of a whirlwind of societal changes.
At the end of the nineteenth century, many community leaders advocated educating all citizens to ensure that the vast numbers of new immigrants understood the civic workings of their new country. Colleges and universities increased in number at the same time. But not everyone now required to obtain an education would attend college. Teaching a manual trade to students who didn’t attend college was called vocational education.
While vocational education became part of the landscape of early twentieth century models of education, new medical treatments enabled people with disabling conditions to live longer. Just as medical advances affected post World War II social movements, this earlier medical progress stimulated social change. A new discipline called ‘rehabilitation” evolved to work with these individuals.
Rehabilitation’s purpose was to find ways to alleviate disabling conditions by keeping people with disabilities in an appropriate social setting. Combining rehabilitation with vocational education led to vocational rehabilitation (Brown Investigating 39).
The first laws funding vocational rehabilitation were passed as World War I ended. Congress first passed the Smith-Hughes Law (Vocational Education Act) of 1917, establishing a Federal Board for Vocational Education (FBVE) to work with men with disabilities in hospitals and encampments. The following year Congress unanimously ratified the Soldier’s Rehabilitation Act to assist returning World War I veterans to join the labor pool (Lenihan 51; M. L. Walker 25).
Two years after the Soldier’s Rehabilitation Act, President Woodrow Wilson signed the first federal act providing vocational rehabilitation services to civilians with disabilities. The program gave states a choice about participating in it. Most states chose to do so. Just four years after the
1920 passage of the Vocational Rehabilitation Act, thirty-six of the forty-eight states belonged to the program (M. L. Walker 33).
The FBVE, the umbrella agency to which vocational rehabilitation belonged, consisted of the cabinet secretaries of commerce, agriculture and labor as ex-officio members and three salaried members responsible for its operations. John Kratz, vocational rehabilitation (VR) chief in 1924, convinced the FBVE and Congress to renew VR for six years.
Early statistics maintained by VR indicated a modest expenditure of $12,000,000 had rehabilitated 45,000 people between 1921 and 1930. This averaged out to a cost of about $300 per person. By 1930, nine more states participated in the program. A total of 143 rehabilitation workers were employed in 44 states. VR’s apparent efficiency led to its renewal in both 1930 and 1932 with increased levels of funding support. Vocational rehabilitation became a permanent program in 1935 (M. L. Walker 39, 58).
In the early thirties, VR transferred to the Office of Education in the Department of the Interior, It did not thrive in this setting. Rehabilitation workers felt their role in placing people with disabilities in the workforce differed from a narrow focus on education. They longed to be housed in another agency. It moved to the Federal Security Agency, created in 1939, along with the Office of Education, but VR continued to be dissatisfied with its place in the hierarchy (M. L. Walker 102-103).
A year later, in 1940, Congress extended vocational rehabilitation services to people with disabilities working in sheltered workshops, those who were homebound, and those in the workforce who required services to remain employed. This significant increase in responsibility set the stage for a decade of greater funding and responsibility. VR grants increased 75% in 1940 and continued to increase throughout the 1940s. In July of 1943, services were broadened to include physical restoration and people with mental illness as clients (Scotch 21; Shapiro 143: M. L. Walker 103).
Vocational Rehabilitation continued to amass larger budgets and greater prestige throughout World War II and the post-war years. Mary Switzer, a career bureaucrat, became director of the agency in 1950. A long-time advocate of vocational rehabilitation’s mission, Switzer spent the next two decades zealously expanding its role and power (M. L. Walker 125-26, passim).
Switzer guided a comprehensive legislative package through congressional appropriations in 1954. State vocational rehabilitation grants rose to a budget of $30,000,000. Additional monies for training medical and rehabilitation professionals established long range agency precedents. Switzer persuaded Congress to fund research and development in medicine and rehabilitation engineering, in-service training programs, rehabilitation centers and sheltered workshops. Switzer also obtained permission to create separate vocational rehabilitation agencies outside of state education agencies (Scotch, 1984, 22).
In the following decade, rehabilitation became a soldier in President Lyndon Johnson’s “War on Poverty.” Funding levels continued to increase, greater numbers of individuals became eligible to receive services, and state matching fund requirements decreased (M. L. Walker 23).
Mary Switzer reluctantly retired in 1970 when she reached the then-compulsory retirement age of 70 (M L. Walker 253). Her impact has remained legendary within the rehabilitation community. But she might not recognize the evolution of disability rights that occurred after her death a year later.
During Switzer’s last years directing VR, organizations like centers for independent living were in their formative stages. Activists with disabilities, like the founders of CIL, empathetic rehabilitation workers, and progressive Congressional colleagues worked together in the early 1970s to implement an agenda for the vocational rehabilitation agency that recognized disability rights. This led to the writing of Section 504.
Sociologist Richard Scotch documented the genesis of Section 504 in his book From Goodwill to Civil Rights. He contended that government bureaucrats developed Section 504. But the late John Hessler, who followed Ed Roberts at Cowell and went on to be a founder of PDSP and CIL, disagreed with Scotch’s narrative in a letter published in the Disability Rag. Hessler remembered a number of activists participating in the concepts and language proposed in the Rehabilitation Act of 1972. According to Hessler’s letter, Fred Collignon, a Berkeley community planner who worked with then Rehabilitation Agency Commissioner Ed Newman, actively involved many Berkeley activists in the planning of the early 1970s act. Hessler wrote that he, along with other disability advocates, worked on language that appeared in the eventual act, including the controversial Section 504 (3).
In the Rehabilitation Act of 1972, Hessler and his colleagues across the country thought they had devised a progressive piece of legislation. It included concepts of independent living, client advocacy programs and some prohibitions of discrimination. But President Richard Nixon vetoed the legislation. He predicted that no one had thoroughly assessed the ramifications of the legislation. His own forecast was that parts of the act, like independent living and Section 504, would be extremely costly and become an administrative nightmare.
Nixon’s 1972 veto sparked demonstrations across the country. Judy Heumann, who organized disability rights protests in New York City and who had successfully fought being denied a teaching job because she used a wheelchair and who later became the united States Department of Education Assistant Secretary of the Office of Special Education and Rehabilitative Services, recalled in a 1980 conversation that New York’s Disabled in Action organized a demonstration of sixty to eighty people to go to Manhattan’s federal building to protest Nixon’s 1972 veto. Whey 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 NEW Secretary David Matthews’ office and threatened to picket the 1976 Republican Convention. A federal notice of intent to publish proposed rules materialized in the May 17, 1976 Federal Register. In July of the same year, the courts ruled 504 regulations should be promulgated but did not set a deadline. A second federal notice of intent to publish proposed rules was published in mid-July with little change from the earlier edition (Scotch 93-96); Brown Investigating 55-57).
During the 1976 presidential campaign, the Philadelphia contingent of Disabled in Action invited representatives from both major parties to a press conference. The Carter campaign emissary was so totally unaware of disability issues that DIA practically ran her out of the room. She returned to local Carter campaign headquarters and reported how tough DIA had been on her. She then educated herself and convinced the local Carter staff that this was important.
The campaign staff sent her back to talk to the group. Out of that meeting came an effort to organize nationwide for Jimmy Carter. The American Coalition of Citizens with Disabilities (ACCD), which had formed the previous year and with which DIA in Pennsylvania was associated, became the national disability focus of organizing for Carter (Pfeiffer).
Passage of 504 regulations became a battle cry of disability activists throughout the country. Two days after president Jimmy Carter’s inauguration in January 1977, about fifteen people met with new HEW Secretary Joseph Califano to advocate for rapid distribution of regulations. The administration received a deadline of April 4, 1977, to issue regulations or disability advocates would pursue an alternative course. Califano resisted for some of the same reasons that Nixon originally vetoed the entire act. He feared that both actual and administrative costs would be more far reaching than anyone imagined (Eunice Fiorito in “We Won’t Go Away….”, Scotch 104).
Disability advocates scheduled a series of demonstrations to follow the April 4 deadline. Ten cities across the country were targeted. The most successful action occurred in San Francisco. More than 150 people took over the federal building there and remained for twenty-eight days. Judy Heumann, who had moved to Berkeley to work at CIL in 1973, was one of the event’s planners and a leader of the takeover. Ed Roberts, in his new position as director of the California Department of Rehabilitation, did not officially engage in planning the protest but left his Sacramento office to join the protest. Early in the action, Heumann, in a statement reminiscent of freedom fighters of all ages, declared, “…we will no longer allow the government to oppress disabled individuals…we will accept no more discussion of segregation” (“We Won’t Go away…”).
The protest in San Francisco worked because many in the community supported it. The city’s mayor ordered law enforcement personnel to leave the protesters alone. The Black Panthers and the Gray Panthers brought in food donated by Safeway and assisted with personal care needs. Attendants were allowed to go back and forth from the building to bring necessities. This also enabled a communication network with those outside the building to be established (Shapiro 67-68).
Local news stations aired the story. Evan White filed the most comprehensive reports, though he was so new to the field that he did not yet have credentials to file national news stories. But White’s luck was good.
Heumann left San Francisco during the occupation to lead a delegation to Washington to talk personally with Califano. He refused to meet with them. They decided to camp on his front lawn until he changed his mind. Evan White traveled from San Francisco to Washington with the group to report the story. A media strike left a void in national news stories, and uncredentialed stringers filed stories. White’s coverage of the demonstrations made national news networks and both the story and his career took off (Walker, personal communication).
After twenty-five days of protests, sitting in, and having demonstrators camped on his lawn, Califano signed the 504 regulations. Victorious protesters emerged from the federal building chanting “We Shall Overcome.” The siege remains the longest takeover of a federal building by any group in American history (Brown Investigating 57-58; Shapiro 69).
A White House Conference on Handicapped Individuals was scheduled to occur May 23-27, 1977. Some speculated one reason Califano signed the regulations was because he knew that 3,000 persons with disabilities and their supporters were on their way to Washington. If he had not signed the regulations by the time they arrived, then many demonstrations would have occurred to the embarrassment of the Carter administration (Pfeiffer).
The successful protests to implement 504 could be considered the first battle of an ongoing war disability advocates have waged to change vocational rehabilitation. Although hardly the only program affecting disability issues, VR has for many years been perceived as one of the most important influences on disability politics.
FROM BUILDINGS TO STREETS: A GLANCE AT THE LATE 1970s
The disability rights movement accelerated phenomenally in the late 1970s. The scope of this history permits only a glimpse at the people and changes that followed the successful protests for implementation of Section 504.
1977 was the year that Houston's Independent Living Research Utilization (ILRU), the first research organization about independent living, began. ILRU was led by Lex Frieden, one of the significant leaders of that part of the country. Frieden, from northwestern Oklahoma, had been a college freshman at Oklahoma State University in Stillwater when he was involved in a car accident. He became a quadriplegic. After his accident, Frieden began to analyze the roles society had created for people with disabilities--and rebelled against them. At ILRU, Frieden and his colleagues developed a definition of independent living that is still being used: "control over one's life based on the choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities" (Frieden et al. 3).
One year after the 504 demonstrations and ILRU's founding, another kind of group emerged. ADAPT developed from a radical Denver CIL called the Atlantis Community. Atlantis began when the late Wade Blank, a white veteran of civil rights marches working at a Denver nursing home, rebelled against the oppression he witnessed in that institution. A fictionalized account of Blank's role in the disability movement was highlighted in the 1990 television movie "When You Remember Me," about the fight to remove a young boy with muscular dystrophy from a nursing home to a community-based residence. Blank's role in that action awakened in him a desire to protest the pervasive discrimination against people with disabilities.
One issue of obvious and symbolic importance was transportation. In the 1950s, blacks protested because they had to sit in the back of the bus; but in the 1970s, disabled people protested because they couldn't get on the bus. People who used wheelchairs had no way of entering a bus, even though equipment such as wheelchair lifts was available, comparatively inexpensive and fairly easy to use. A group of nineteen Denver activists organized with Blank to form a group called American Disabled for Accessible Public Transit (ADAPT).
The first ADAPT demonstrations were staged on July 5 and 6, 1978, in Denver. Soon other ADAPT chapters and similar organizations formed throughout the country. Their methods of protest included blocking buses or chaining oneself to a bus so it couldn't move. The theory was that if disabled people could not use the buses then neither could anyone else.
Police quickly arrived to arrest the protesters. But it was not such a simple process. First, police often still thought of disabled people as sick and vulnerable and were either cautious about injuring them or careless about not doing so. Second, the paddy wagons, like the buses, were frequently inaccessible, so police had no way to transfer people to jail. And if they did find a way, the jails were often inaccessible. The protests continued and ADAPT became the first long- term United States grass roots movement of disability activists (Brown Investigating 58-59)
INDEPENDENCE IN THE 1980s AND 1990s
The story of independent living in the past two decades is one of growing pains and what some would term a stormy adolescence. Representative examples are used to describe the history of the past twenty years. See “Selected Significant Dates in Independent Living History” for a more detailed list of pivotal laws and activism.
During the late 1970s, the first group of federally funded independent living centers feared that in debates surrounding the next reauthorization of the Rehabilitation Act, CILs would be eliminated. Since CILs were still categorized as demonstration projects, not renewing them would be fairly simple. CIL advocates discussed their situation and decided to hold a meeting of all CILs in 1981. From this assembly developed what is now known as the National Council on Independent Living (NCIL). The national organization, first known as the National Council of Independent Living Programs, elected Max Starkloff, founder of Paraquad in St. Louis and former nursing home resident, as its first president. The association then coalesced to ensure that its members retained funding and that they adhered to the independent living philosophy as described at the beginning of this history.
Adhering to this philosophy has not come without battles. Perhaps the most famous of the period occurred in Norman, Oklahoma, when five of six staff members walked out of their CIL because of continuous confrontations with their board, including arguments over consumer control (Brown "The Walkout").
One way to put this conflict into a bigger picture is within the context of models of viewing disability. The one that has most often been called to task within independent living circles is the medical model.
Medicine, like all disciplines, has its method. A physician is trained to detect symptoms, diagnose ailments and prescribe cures. A person with a disability is not sick. A disabled person may become ill with a cold, or flu, or measles, or any other ailment a nondisabled person might acquire. But having a disability is not the same as being perpetually indisposed. There are many healthy quadriplegics. There are also sickly quadriplegics. But the quadriplegia itself is simply an inability to use all or part of four limbs. It is a disability; it is not an illness.
Medical personnel are not trained to appreciate this distinction. They are instructed to cure illnesses. When that is not possible, as in the case of disability, medical training is inadequate. Medical solutions to disability issues have been called a medical model. This model is distinguished by perpetuating the notion that someone who has a disability is broken, in disrepair, or infirm. This perception is easily integrated into medical training. If patients are broken, they can be fixed. If ill, they can be cured. There is only one viable alternative to this philosophy, and that is death. There is no room for any intermediate position. Ongoing disability does not enter into the equation.
In the medical model, if people can neither be fixed nor cured and will not die, then they are no longer of medical concern, other than easing the inevitable wait for departure from this world. The medical model validates previous perceptions of incompetence, deviance, and invalidism. Individuals with disabilities have no worth in either the medical or the social hierarchy. As one might imagine, this philosophy leads to confrontation with the notion of capable, valuable human beings with disabilities put forth by advocates with disabilities (Brown Investigating 52-53).
In the confrontation in Norman, the fallout from the medical model was apparent. People without disabilities felt a need to tell people with disabilities how to run their organization and, by extension, their lives. People with disabilities who were learning to rebel against models that had invalidated their own choices responded defiantly.
This led to a change in the last revision of the Rehabilitation Act in the 1980s. Known as consumer control, this change requires that more than half of the members of the board of directors in each center for independent living must be individuals with disabilities. In the 1990s this was expanded to include CIL management as well.
As independent living centers not only remained in the Rehabilitation Act but increased in numbers and funding, NCIL gained momentum throughout the 1980s. During the latter part of the decade, Marca Bristo, disability rights activist and executive director of Access Living in Chicago, who in the Clinton years has chaired the National Council on Disability, became the organization's president. She led a fight against what some observers saw as a Ronald Reagan supported backlash against progress for individuals with disabilities.
Reagan unsuccessfully attempted to overturn Section 504. But Reagan is not easy to dismiss simply as an anti-disability leader. He also appointed Lex Frieden to direct the National Council on the Handicapped (now National Council on Disability) and Justin Dart as commissioner of the Rehabilitation Services Administration. Each of these individuals became pivotal in advancing our rights. While Frieden, Dart and others worked with the Reagan administration, Bristo's leadership and fiery orations guided demonstrators into opposition protest marches.
One of the most detrimental decisions of the 1980s came from the Supreme Court, which ruled in the mid-1980s that 504 applied only to the part of an institution that directly received federal funds. This meant that entire universities, for example, did not have to comply with Section 504, only that part of the school that put federal funds in its program's budget. Disability advocates fought for several years to negate this ruling, and in 1988 Congress passed, over Reagan's veto, the Civil Rights Restoration Act which ensured that "Federal anti-discrimination statutes apply to an institution in its entirety if it accepts Federal aid for as little as one program" (Levy 34).
While advocates fought to restore the intent of 504, Lex Frieden led a study at the National Council on the Handicapped about the place of people with disabilities in American society. Published in 1986 as Toward Independence, the monograph described discriminatory policies towards people with disabilities in housing, employment, transportation, education and other aspects of American life. It called for the passage of a law which would bar such discrimination. This led advocates to draft legislation that eventually became the 1990 Americans with Disabilities Act (ADA).
One of the national stories that helped convince Congress to pass the ADA occurred in 1988 at Gallaudet University--the world's only university for students who are deaf and hard of hearing. In 1987, Gallaudet's president announced his resignation. Early the next year, several Gallaudet students concurred that the time was right for the university to select its first deaf president. The Gallaudet board of trustees ignored the students and chose the only hearing person of three candidates. The deaf student population rebelled with what became known as the Deaf President Now movement. Taking their issues to both the national media and to Congress, the Deaf President Now movement quickly amassed national support. In a matter of one week, the Gallaudet board agreed to the student demands, hiring popular and deaf Gallaudet dean of arts and sciences I. King Jordan as president. They also changed the composition of the board of trustees to half deaf (Shapiro 75-83).
The injustice of a hearing person trying to run a deaf university struck a chord with both the American people and Congress and helped both to understand why people with disabilities would want a law like ADA. It was one of many stories that helped achieve passage of what has been called the most important civil rights law since the Civil Rights Act of 1964.
Personal stories often embrace solutions to much larger matters. Autobiography, in fact, often plays vital roles in the passage of laws. This situation occurred with the fight to pass the Americans with Disabilities Act of 1990 (ADA).
Justin Dart, a longtime disability advocate, spent a considerable amount of time and money traveling to every state in the union in the late 1980s to collect information demonstrating the need for the ADA. He asked people to write or relate discrimination diaries, experiences that people with disabilities had in their everyday lives that led to their belief in the desirability of such a law.
Many stories were collected. Some of the more poignant storytellers testified before Congress. One was a young woman from the state of Washington who has cerebral palsy. She testified that she tried to get into her hometown theater to see a movie, but the ticket taker would not admit her because her speech was slurred. This woman's story touched the heart of many members of Congress and President Bush, who recounted it when greeting celebrants at the ADA signing (Brown, Investigating 74; Shapiro 105-06, 140).
The ADA was not passed without many confrontations. ADAPT led a march on the Capitol steps in which people abandoned their wheelchairs and crawled up to the entryway to Congress. On the second anniversary of the signing of the ADA in 1992, Denver dedicated a plaque to the first ADAPT activists of the late 1970s. Wade Blank, as a nondisabled person, didn't believe his name belonged on the plaque, but he did visit it once a week to clean it of bird droppings and other debris (Hartman, personal communication). During the remainder of the 1990s, independent living advocates have fought to solidify their gains, expand independent living centers, retain the intent of the ADA in court decisions, get people who do not want to languish in nursing homes out into the community and fight the trend toward passage of assisted suicide legislation.
INDEPENDENT LIVING IN THE YEAR 2000
From the institutionalization of independent living centers to the current court cases that are redefining the meaning of ADA, the independent living movement has been an incredibly active part of our nation's late twentieth century history. There are now more than 600 centers in existence in every state and many countries. What can we expect at the dawn of the next millennium? Here are some highlights:
· 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 of art.
· 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!
THE REHABILITATION ACT OF 1973 AS AMENDED
Title VII of the Rehabilitation Act
The Rehabilitation Act of 1973, as Amended in 1986, included the following parts:
1. Title VII Part A funds services for independent living rehabilitation (oxymoron) to individuals determined "eligible" for such services; parallels Title I (vocational rehabilitation program); based upon the medical/rehabilitation paradigm.
2. Title VII Part B was written to establish centers which operate with the IL philosophy, basing programs on the independent living paradigm; however, Part B grants have gone to single disability organizations, state agency operated centers, rehabilitation hospitals, and developmental disability group home operators -- none of which operate under the IL philosophy or paradigm.
3. Title VII Part C funds programs of service for older blind adults -- a contradiction of the cross disability focus of the movement.
4. Title VII Part D (un-funded until 1990) provides funds for "protection and advocacy of individual rights," but denies CILs access to these funds because they are recipients of Title VII funds -- even though consumers of CIL services are already "protected" by the mandated client assistance project (CAP) for any grievances against a specific center or center service. These funds could have been used by centers to buy "protection and advocacy" (or legal) services for CIL consumers by allowing the CIL to hire an attorney on staff or to contract with a local law firm.
The Rehabilitation Act of 1992 dramatically changed the structure and flow of Title VII money to the states for centers and for services. (See chart on next page for comparison of the "old Title VII" and the new.) Included in the current draft are the following critical changes:
1. Statewide Independent Living Councils (SILC) -- There will be new statewide independent living councils which will have broader responsibilities and "real" authority, such as:
a. co-sign off authority for the state plan;
b. members will be appointed by the governor;
c. one member must be the executive director of a CIL who is selected by other center directors within the state;
d. others on the council will include representatives of appropriate state agencies, including vocational rehabilitation and blind agencies, but they will be non-voting members;
e. it will be consumer controlled, with at least 51 percent of the members being people with disabilities (not counting people who work for centers or state agency representatives, even if they have disabilities); and,
f. and last, but by no means least, it will have staff to supervise, evaluate and assist in carrying out the SILC's duties.
Systems Change -- The new Act contains a section that is considerably different than the past Title VII Part A. It is a new Part B and will be used to demonstrate new ways to expand and improve independent living services. Money to support new and innovative approaches to service delivery may be drawn from either Title VII Part B or the new Part C under Title I ("Strategic Planning: Innovation and Expansion Grants"). The state vocational rehabilitation agency and the statewide independent living council will jointly
develop a plan for such projects. For example, these projects could include demonstrations on how independent living services can be delivered in an underserved portion of the state.
Centers for Independent Living -- One significant change in the new amendments is that organizations receiving CIL funds must meet National Council on Disability (NCD) standards, slightly revised from earlier versions. Key definitions, standards and assurances are all spelled out in the new Title VII and have been altered to fit the philosophical and experiential base the movement now has. Funding for CILs comes from the Senate version's new Title VII Part C (replacing the old Part B). Centers currently receiving Title VII Part B funds who can meet the NCD standards will continue to receive funds under the new law. As long as the centers meet standards, they will continue to receive funds. If a center does not meet standards after the first year, the Feds or states can pull their funds with only 90 days notice!
Methods of Funding -- How a center gets its money depends upon the level of state funding going into center operations. If a state contributes an amount equal to or greater than its current Title VII Part B allotment, then the state could continue to receive the federal dollars for distribution to centers. If the state is not contributing an equal amount, then funding goes directly from RSA, through regional offices, to the centers in that state. Even if a state is contributing more than the Feds, it could elect to allow the CIL funding to go directly from RSA to the CILs by not applying for the money itself.
Employability -- Many independent living advocates wanted employment feasibility criteria removed from the Act altogether, but recognized that this could set up the rehabilitation system as a funding source for individuals who have no intent of pursuing a vocational goal. This could have meant that people could use its funds inconsistent with the Act's basic purpose. For example, someone with a terminal illness could apply for funds to cover surgical expenses. But significant changes were made to the "employment feasibility" issue in other ways.
One significant change involves who is responsible for proving that an individual with a disability is employable or can benefit from vocational rehabilitation services. Generally referred to as "presumption of benefit," the new law places the burden to prove that an individual cannot benefit from VR services on the VR counselor. The counselor must have "clear and convincing evidence" that a person cannot benefit -- this is the highest civil standard in law. If there is confusion or doubt about eligibility because of the severity of an individual's disability, then the consumer can receive services through an extended evaluation period for up to 18 months, with an evaluation every three months to determine progress. Also, a counselor must determine eligibility in a "reasonable amount of time" but no longer than 60 days.
IWRP -- The new law requires that the "individualized written rehabilitation plan" (IWRP) be "jointly developed, agreed upon and signed" by the counselor and the consumer. An innovation here -- the IWRP must include a statement by the consumer, in his or her own words (or the words of a legal parent or guardian), describing how he or she was informed of options and how goals and objectives for the plan were selected. And there must be "consumer choice" over vocational rehabilitation options and services, including the use of vendors not previously authorized or used by the state vocational rehabilitation agency.
State Rehabilitation Advisory Councils -- This is new. A consumer advisory council is established to be involved in the decision-making process, including helping to select impartial hearing officers. The council will be appointed by the governor and composed of a designated representative of the statewide independent living council (SILC) as well as others from public and private organizations involved in rehabilitation.
The Rehabilitation Act needs radical reform if the IL paradigm is to be retained and reinforced in pursuit of equal access and equal opportunity. The Act of 1992 is a major beginning. It says, in law that CILs must:
1. Establish themselves as private, not-for-profit organizations governed by an independent board of directors;
2. Be community-based and community responsive;
3. Maintain a majority of people with disabilities on their boards of directors and on their staff;
4. Truly represent different disability groups; be cross-disability in approach and composition;
5. Provide services, including the "core services" of information and referral, individual and systems, advocacy, independent living skills training, and peer counseling, which are directed by "consumers" themselves; and
6. Advocate for systems change, laws, regulations, policies and procedures which create and maintain equal access for people with disabilities who want to live Independently in the communities of their choice.
The modern history of civil rights for people with disabilities is three decades old. A key piece of this decades-long process is the story of how the Rehabilitation Act of 1973 was finally passed and then implemented. It is the story of the first organized disability rights protest.
The Rehabilitation Act of 1973
In 1972, Congress passed a rehabilitation bill that independent living activists cheered. President Richard Nixon's veto prevented this bill from becoming law. During the era of political activity at the end of the Vietnam War, Nixon's veto was taken lying down by disability activists who launched fierce protests across the country. In New York City, an early leader for disability rights, Judy Heumann, staged a sit-in on Madison Avenue with eighty other activists. Traffic was stopped. After floods of angry letters and protests, in September 1973, Congress overrode Nixon's veto and the Rehabilitation Act of 1973 finally became law. Passage of this pivotal law was the beginning of the ongoing fight for implementation and revision of the law according to the vision of independent living advocates and disability rights activists.
Key language of the Rehabilitation Act, found in Section 504 of Title V, states that:
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.
Advocates realized that this new law would need regulations in order to be implemented and enforced. By 1977, Presidents Nixon and Ford had come and gone. Jimmy Carter had become president and had appointed Joseph Califano his Secretary of Health, Education and Welfare (HEW). Califano refused to issue regulations and was given an ultimatum and deadline of April 4, 1977. April 4 went by with no regulations and no word from Califano.
On April 5, demonstrations by people with disabilities took place in ten cities across the country. By the end of the day, demonstrations in nine cities were over. In one city - San Francisco - protesters refused to disband.
Demonstrators, more than 150 people with disabilities, had taken over the federal office building and refused to lease. They stayed until May 1. Califano had issued regulations by April 28, but the protesters stayed until they had reviewed the regulations and approved of them.
The lesson is a fairly simple one. As Martin Luther King said,
It is a historical fact that the privileged groups seldom give up their privileges voluntarily. Individuals may see the moral light & voluntarily give up their unjust posture, but, as we are reminded, groups tend to be more immoral than individuals. We know, through painful experience that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed.
Leaders In The Independent Living Movement
The history of the independent living movement is not complete without mention of some of the other leaders who continue to make substantial contributions to the movement and to the rights and empowerment of people with disabilities.
- Max Starkloff, Charlie Carr, and Marca Bristo founded the National Council on Independent Living (NCIL) in 1983. NCIL is one of the only national organizations that is consumer-controlled and promotes the rights and empowerment of people with disabilities.
- Justin Dart played a prominent role in the fight for passage of the Americans with Disabilities Act, and is seen by many as the spiritual leader of the movement today.
- Lex Frieden is co-founder of ILRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction in Congress.
- Liz Savage and Pat Wright are considered to be the "mothers of the ADA". They led the consumer fight for the passage of the ADA.
There are countless other people who have and continue to make substantial contributions to the independent living movement.
HISTORY OF INDEPENDENT LIVING
by Gina McDonald and Mike Oxford
This account of the history of independent living stems from a philosophy, which states that people with disabilities should have the same civil rights, options, and control over choices in their own lives as do people without disabilities.
The history of independent living is closely tied to the civil rights struggles of the 1950s and 1960s among African Americans. Basic issues - disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation, and employment - and the strategies and tactics are very similar. This history and its driving philosophy also have much in common with other political and social movements of the country in the late 1960s and early 1970s. There were at least five movements that influenced the disability rights movement.
Social Movements
The first was deinstitutionalization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement was led by providers and parents of people with developmental disabilities and was based on the principle of "normalization" developed by Wolf Wolfensberger, a sociologist from Canada. His theory said that people with developmental disabilities should live in the most "normal" setting possible if they were expected to be have "normally." Other changes occurred in nursing homes where young people with many types of disabilities were warehoused for lack of "better" alternatives (Wolfensberger, 1972).
The next movement to influence disability rights was the civil rights movement. Although people with disabilities were not included as a protected class under the Civil Rights Act, it was a reality that people could achieve rights, at least in law, as a class. Watching the courage of Rosa Parks as she defiantly rode in the front of a public bus, people with disabilities realized the more immediate challenge of even getting on the bus.
The "self-help" movement, which really began in the 1950s with the founding of Alcoholics Anonymous, came into its own in the 1970s. Many self-help books were published and support groups flourished. Self-help and peer support are recognized as key points in independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and to understand each other than individuals who do not share experience with similar disabilities.
Demedicalization was a movement that began to look at more holistic approaches to health care. There was a move toward "demystification" of the medical community. Thus, another cornerstone of independent living philosophy became the shift away from the authoritarian medical model to a paradigm of individual empowerment and responsibility for defining the meeting one's own needs.
Consumerism, the last movement to be described here, was one in which consumers began to question product reliability and price. Ralph Nader was the most outspoken advocate for this movement, and his staff and followers came to be known as "Nader's Raiders." Perhaps most fundamental to independent living philosophy today is the idea of control by consumers of goods and services over the choices and options available to them.
The independent living paradigm, developed by Gerben DeJong in the late 1970s (DeJong, 1979), proposed a shift from the medical model to the independent living model. As with the movements described above, this theory located problems or "deficiencies" in the society, not the individual. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as social and attitudinal barriers were the real problems facing people with disabilities. The answers were to be found in changing and "fixing" society, not people with disabilities. Most important, decisions must be made by the medical or rehabilitation professional.
Using these principles, people began to view themselves as powerful and self-directed, as opposed to passive victims, objects of charity, cripples, or not-whole. Disability began to be seen as a natural, not uncommon experience in life; not a tragedy.
Independent Living
Ed Roberts is considered to be the "father of independent living". Ed became disabled at the age of fourteen as a result of polio. After a period of denial in which he almost starved himself to death, Ed returned to, school and received his high school diploma. He then wanted to go to college. The California Department of Rehabilitation initially rejected Ed's application for financial assistance because it was decided that he was "too disabled to work." He went public with his fight and within one w eek of doing so, was approved for financial aid by the state. Fifteen years after Ed's initial rejection by the State of California as an individual, who was "too" disabled, he became head of the Department of Rehabilitation - the agency that had once written him off.
After Ed earned his associates degree at the College of San Mateo, he applied for admission to the University of California at Berkeley. After initial resistance on the part of the university, Ed was accepted. The university let him use the campus hospital as his dormitory because there was no accessible student housing (none of the residential buildings could support the weight of Ed's 800 lb. iron lung). He received attendant services through a state program called "Aid to the Totally Disabled." This is a very important note because his was consumer-controlled personal assistance services. The attendants were hired, trained, and fired by Ed.
In 1970, Ed and other students with disabilities founded a disabled students' program on the Berkeley campus. His group was called the "Rolling Quads." Upon graduation, the "Quads" set their sights on the need for access beyond the university's walls.
Ed contacted Judy Heumann, another disability activist, in New York. He encouraged her to come to California and along with other advocates; they started the first center for independent living in Berkeley. Although it started out as a "modest" apartment, it became the model for every such center in the country today. This new program rejected the medical model and focused on consumerism, peer support, advocacy for change, and independent living skills training.
In 1983, Ed, Judy, and Joan Leon, co-founded the World Institute on Disability (WID), and advocacy and research center promoting the rights of people with disabilities around the world. Ed Roberts died unexpectedly on March 14, 1995.
The early 1970s was a time of awakening for the disability rights movement in a related, but different way. As Ed Roberts and others were fighting for the rights of people with disabilities presumed to be forever "homebound" and were working to assure that participation in society, in school, in work, and at play was realistic, proper, and achievable goal, others were coming to see how destructive and wrong the systematic institutionalization of people with disabilities could be. Inhuman and degrading treatment of people in state hospitals, schools, and other residential institutions such as nursing facilities were coming to light and the financial and social costs were beginning to be considered unacceptable. This awakening within the independent living movement was exemplified by another leading disability rights activist, Wade Blank.
ADAPT
Wade began his lifelong struggle in civil rights activism traveling with Dr. Martin Luther King, Jr. to Selman, Alabama. It was during this period that he learned about the stark oppression which occurred against people considered outside the "mainstream " of our "civilized" society. By 1971, Wade was working in a nursing facility, Heritage House, trying to improve the quality of life of some of the younger residents. These efforts, including taking some of the residents to a Grateful Dead concert, ultimately failed. Institutional services and living arrangements were at odds with the pursuit of personal liberties and life with dignity.
In 1974, Wade founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. The Atlantis Community provided personal assistance services primarily under the control of the consumer within a community setting. The first consumers of the Atlantis Community were some of the young residents "freed" from Heritage House by Wade (after he had been fired). Initially, Wade provided personal assistance services to nine people by himself for no pay so that these individuals could integrate into society and live lives of liberty and dignity.
In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently in the community. This was the year that American Disabled for Accessible Public Transit (ADAPT) was founded. On July 5-6, 1978, Wade and nineteen disabled activists held a public transit bus "hostage" on the corner of Broadway and Colfax in Denver, Colorado. ADAPT eventually mushroomed into the nation's first grassroots, disability rights, activist organization .
In the spring of 1990, the Secretary of Transportation, Sam Skinner, finally issued the regulations mandating lifts on buses. These regulations implemented a law passed in 1970 - the Urban Mass Transit Act - which required lifts on new buses. The transit industry had successfully blocked implementation of this part of the law for twenty years, until ADAPT changed their minds and the minds of the nation.
In 1990, after passage of the Americans With Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community-based personal assistance services and the end of the apartheid-type system of segregating people with disabilities by imprisoning them into institutions against their will. The acronym, ADAPT, became "American Disabled for Attendant Programs Today." The fight for a national policy of attendant services and the end of institutionalization continues to this day.
Wade Blank died on February 15, 1993, while unsuccessfully attempting to rescue his son from drowning in the ocean. Wade and Ed Roberts live on in many hearts and in the continuing struggle for the rights of people with disabilities.
The lives of these two leaders in the disability rights movement, Ed Roberts and Wade Blank, provide poignant examples of the modern history, philosophy, and evolution of independent living in the United States. To complete this rough sketch of the history of independent living, a look must be taken at the various pieces of legislation concerning the rights of people with disabilities, with a particular emphasis on the original "bible" of civil rights for people with disabilities, the Rehabilitation Act of 1973.
The Role of Independent Living Centers in
Promoting Civil Rights for Persons with Disabilities
In an ILRU project conducted during the past year to examine the roles and responsibilities of board members of independent living centers, we obtained information on the extent to which centers have an obligation to advocate for the civil rights of their constituencies–people with disabilities. This project on center boards took the form of structured telephone interviews, conducted separately, with the executive director and board president of six centers–a total of 12 interviews. The centers were chosen to represent different sizes, geographical regions, and urban/rural settings. A question on appropriate civil rights orientation for centers was included in each interview.
We learned that these individuals who hold the most influential positions in centers believe unequivocally in the importance of centers advocating for civil rights. We were told repeatedly that one of the most important distinctions between centers and other agencies and benefit programs is this orientation to civil rights.
While these individuals interviewed said that civil rights orientation should characterize everything that centers do, they expressed deep reservations about this actually being the case. Many believed that when substantial funding for service delivery became available to centers, some forgot that the primary mission of the independent living movement has been to lead the fight for the civil rights of persons with disabilities. They saw a tendency, if not in their own centers then in others, to approach service delivery in a manner similar to the approaches taken by public benefit programs with rigid and often demeaning eligibility requirements or by charity agencies designed to serve the “needy.”
They warn that centers need to be constantly on guard against drifting into such inappropriate approaches. They saw that if you have people on your board and staff who are committed to “helping those less fortunate,” then you are probably going to end up with a center that delivers a lot of services but appears to be very much like charity organizations that are in the business of helping the “needy.”
The people we spoke with want to see centers with board and staff members whose paramount commitment is to equal rights for all, because, they say, then you still have a center that is working hard to make changes in the community and sees itself as promoting equal access in all areas of living. The people whom we spoke with realize, however, that the civil rights orientation of the independent living movement is extremely subtle and can be easily overlooked in the day-to-day effort to deliver services.
They see training as the solution: centers must develop ways to provide both new staff members and new board members with a firm grounding in the civil rights orientation of the independent living movement, and centers must make sure that ongoing training is provided to staff and board members so that they will be kept mindful of the reasons why centers are unique. Boards of independent living centers need to be constantly asking the question, “Are we in the business of making changes that lead to a better community, or are we in the business of counting units of service?”
For those of you who would like a mini-refresher course on disability and civil rights, we recommend the follow readings: In The Unexpected Minority: Handicapped Children in America, John Gliedman and William Roth talk about adults with disabilities beginning to address their problems from the perspective of civil rights rather than from more traditional perspectives; in Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research, Gerben DeJong notes that the civil rights movement for racial minorities made us aware of how civil rights continue to be denied to persons with disabilities. Also: Although the Rehabilitation Act of 1973 is often referred to as the civil rights act for people with disabilities, current efforts underway to promote passage of the ADA remind us that there continues to be a long way to go in eliminating discrimination toward persons with disabilities in all aspects of living. In the Spring 1989 issue of the NCIL Newsletter, Bonnie O’Day points out that the ADA was introduced to Congress for the purpose of establishing a “. . . clear and comprehensive mandate for the elimination of discrimination against persons with disabilities.
Disability Meets The Boom
by Frank Bowe
These are hard times for disability advocates. The nation, and most states, have other priorities. Hurricanes Rita and Katrina have dominated the news and our attention in recent weeks. Even without those urgent concerns, Washington, DC, has federal budget deficits in the hundreds of billions of dollars. This translates into cuts in programs affecting people with disabilities. It also means that there is almost no interest in expanding services -- for anyone. On other fronts, our leaders are preoccupied with Iraq and Afghanistan. Congress is bitterly divided by partisan rancor. If anything positive is going on for people with disabilities in Washington, DC, it's news to me.
In the states, meanwhile, rising costs of public pensions for state workers, of Medicaid, and, in many areas, of supporting the huge influx of undocumented persons are similarly crowding out any sparks of interest in disability services and rights. Helping the many people who were displaced by Rita and/or Katrina, as urgent and needed as it is, has a similar effect.
What's an advocate to do? These are large societal forces. They seem to be too big for our small movement to fight. Not surprisingly, many advocates are lying low. Some are busy raising funds, preparing for the day when we can once again make ourselves heard. Others are rediscovering long-neglected personal needs and interests.
It's my belief that they haven't noticed that there's something not just big, but humongous, going on underneath the surface. The disability community is about to become a lot more central in American life.
The Graying of Baby Boomers Advocates know, but may not realize the significance of, this fact: the 76 million-member baby boom generation is rapidly aging. This year the leading edge turns 59. In just a few years, millions will reach retirement age. Between 2010 and 2020, the number of people aged 65-84 will go up 39 percent (by 13 million people). By 2010, there will be 34 million persons 65-84; ten years later, in 2020, there will be 47 million.
So what, you say? Bear with me. In what follows, I am drawing upon data from the Centers for Disease Control and Prevention (CDC) and the National Center for Health Statistics (NCHS). I'll cite the sources later. First, the numbers:
As people get into their 60s and 70s, they become increasingly likely to develop heath conditions. Take hearing. There was a Newsweek cover story this summer (the cover, no less!) about this. In the U.S. today, about 31 million people report some level of "trouble" with their hearing. That's 15 percent of all Americans. Now, because hearing loss is most frequent among older persons, this group is set to explode. Today, among persons aged 65-74, 30 percent have a hearing loss. Of those 75 years of age or older, 46 percent have a hearing impairment.
What is happening is that the number of people in these age ranges is surging, simply because the 76 million baby boom generation is beginning to move through those age spans. By 2020, if those percentages hold (which they very likely will), there will be 40 percent more persons with
hearing impairments in these age groups. It's simple math.
The same thing is occurring with respect to vision impairments. Today, 19 million Americans of all ages report "trouble" with their sight. That's 9 percent of the population. Among those aged 65-74, though, the proportion jumps to 15 percent. Of those 75 years of age or older, 21 percent have a vision loss. By 2020, you will see 40 percent more in each age range having impairments of vision.
Or take mobility. Today, 14 percent of American adults report "moderate mobility difficulty". A total of 28 million of us have physical conditions of one kind or another. That's about one in every ten. Of them, 13 million Americans find it very difficult or impossible to walk a quarter mile. That's 6
percent of the population. Yet again, as the saying has it ("The legs are first to go"), these numbers rise as people age.
The sources for all this: "Summary Health Statistics for U.S. Adults, National Health Interview Survey, 2002" (on the current numbers) -- available online as a PDF file -- and "Projections (2010-2020)" at the Census Bureau's website.
Implications
The fact that over the next several years tens of millions of older Americans will begin to have sensory and/or physical conditions is significant for a number of reasons. While not a lot will actually have disabilities, they will experience limitations. Accessibility issues will be, for these people, no longer "someone else's problems" but rather "our concern". Suddenly, they will have a
personal interest in many of the same things we do.
And it's well-known that seniors vote at a much higher rate than do people who are younger. It all adds up to a steadily growing presence.
To appreciate the power of this presence, think back to the history of the baby boom generation. In the 1950s, these people -- all by themselves -- created what we later learned to recognize as the market for children's products. It started with Davy Crocket coonskin caps, and then went on to the Mouseketeeers, and hula hoops. Later, when the boomers became teens and young adults, they gave us rock-n-roll, Woodstock, and the anti-war movement protesting American involvement in Vietnam. This same generation went on to change the norms of the workplace, as tens of millions of women entered the work force. Those are the kinds of social upheavals that occur when you have a "pig in a python" 76-million-strong cohort moving through different age spans.
What's different now is that, for the first time, this huge social force is about to boost the disability movement. Our challenge is to recognize their emerging needs and interests, and to align those with ours.
Telling the Story
With numbers this large, the story changes. Especially with respect to hearing, vision, and mobility, issues of accessibility become general, rather than special, interests.
Our job is going to be to convince the mass media of this. The statistics above will help. Then, working with editors and reporters, we need to point out the needs those of us with disabilities share with baby boomers who have health conditions that fall short of being disabilities. Writers among us need to be submitting stories to mass media outlets, tolerating as we do the inevitable rejection slips. Our goal: as boomers watch television, surf the Web, read newspapers and magazines, listen to the radio, they are made aware of those shared concerns.
Think, for example, about cell phones. An astonishing 160 million Americans now use wireless phones every day. The phones are so small already that older people have difficulty with the controls and even with the buttons. Much easier is to just say the number and have the phone dial it. This feature is available on a couple of cell phones. We need to make ita regular feature. Or think about GPS. Today, if you want global positioning satellite location service on your cell phone, it's only available on a few models, and then at some $20 extra a month. It should be standard and free. Many people with disabilities would be much safer if their 9-1-1 calls automatically told dispatchers where they were.
Medicare's durable medical equipment policies and Medicaid's personal care attendant policies are about to affect millions more people. This means that our complaints are going to be echoed by a lot more people -- and finally get policy makers' attention -- if and only if aging baby boomers become aware of our issues and align themsel