TITLE:NO PITY 1994

Kathy’s Note: The book is very, very difficult to read emotionally. It shows how far we have come and yet how far we have to go both as disabled people and individually. I highly recommend the book.

Chapter 1- Tiny Tims, Supercrips and the End of Pity: The evolution of the image of people with disabilities. Since the Old Testament times people with disabilities have been seen as having done something that displeased God. Fictional characters, such as Tiny Tim in the Christmas Carol always needed a cure or care from an able-bodied adult. These characters became more violent as a staple in horror movies, like Freddy Krueger, who couldn’t deal with his disfigurement; so he became a killer.

In 1966, Jerry Lewis began his MDA telethons. The telethons used pictures of children with disabilities side by side with able- bodied children, with the caption reading ‘this, not this, to raise money for causes such as MDA. Adults with disabilities were never shown, only children, because it was only tolerable when disability happened to children where an adult could protect them. The problem came when children grew up and did not get ‘cured.’ Adults were damaged goods who needed to try harder to deserve charity.

The belief that a disability could be overcome led to the image of the inspirational disabled person. The "supercrip" is the flipside of pity because it implies that a person is presumed to be deserving of pity, instead of respect, until he or she proves capable of overcoming a physical or mental limitation through extraordinary feats. Disabled people are trying to change this thinking. Disability in and of itself is not tragic or pitiable. People have been using this thinking to fight discrimination wherever they find it, deriving unexpected power by playing off the stereotypes they seek to destroy.

Evan Kemp, Jr., one of the original kids for Jerry Lewis became an adviser for George Bush and was credited for making disability civil rights a priority. Work is the biggest form of discrimination. Only one-third of people with disabilities work and seventy-nine percent of the remainder want to work.

The perception of disability is slowly changing. There are more people with disabilities on T.V, but for the most part they are still sugary sweet. T.V advertisers have begun to use positive portrayals of people with disabilities showing that people with disabilities have money and spend, and are a profitable market.

Chapter 2- From Charity to Independence: Ed Roberts and Judy Huemann began the Independent Living Movement. Roberts attended the University of California at Berkeley, living in the only accessible place, the third floor of the infirmary. As other students with disabilities were admitted to the university, they lived together, forming the "Rolling Quads." In 1968, the dormitory became a formal program run by the state department of rehabilitation. When a counselor evicted two men from the dormitory for low grades, disabled and able-bodied students protested forcing the counselor to resign. The group expanded their power forcing the city in build curb cuts.

Roberts came to Washington, D.C. to extend an anti-dropout program to people with disabilities. The Rolling Quads received the grant of $81,000 from the Department of Health, Education and Welfare, the university put in another $2,000 and the Physically Disabled Students’ Program (PDSP) began. PDSP found accessible apartments and personal attendants guiding new students through the bureaucracy that came with attendant care funding. In 1972, Roberts and his colleagues incorporated the Center for Independent Living for non-students. In 1975, Governor Jerry Brown appointed Roberts the director of the state Department of Rehabilitation.

Judy Huemann, who was denied a teaching certificate because of her inability to get children out of the building in an emergency, sued the Board of Education. After she received media attention the Board gave her a teaching certificate. Huemann started Disabled in Action (DIA), an explicitly political group that provided direct services. In 1972, DIA demonstrated at the Lincoln Memorial after Nixon vetoed a spending bill funding disability programs. Huemann joined a group of disabled Vietnam vets to take over Nixon’s reelection headquarters in New York to demand an on-camera debate with the president.

It took a 25-day protest to get the Secretary of Health, Education and Welfare to write regulations for Section 504. Protesters took over HEW offices in Washington, D.C. overnight. In San Francisco the sit-in lasted 25 days and endangered the lives of the protesters because of the lack of catheters and attendants. Roberts, now the state director of rehabilitation gave his support to the protesters and the people became more cohesive and felt more powerful. Unlike the black civil rights movement, Section 504 would cost money to make buildings accessible. In 1978, Congress gave the Rehabilitation Services Commissioner discretionary power to award money to the states to operate independent living centers, assuring steady money but limiting their political activism. By the 1980s and 90’s, the children, who were guaranteed education with IDEA, were graduating from high school and had a new sense of independent living.

Chapter 3- The Deaf Celebration of Separate Culture: In 1988, the student body and alumni of Gallaudet University, an university for the deaf, protested and ultimately shut the school down, after the search committee announced that they were going to select the only hearing candidate as the next university president. The other issue of importance was the university’s unwillingness to support businesses owned by the deaf. Presidential candidates, George Bush and Bob Dole both argued for a deaf president. Finally, the woman step down and the board of trustees appointed a deaf president and a deaf chairman of the board.

In the 19th Century, deaf people were taught to speak and in 1880 oralism was named the universal teaching method of the deaf, but deaf people could not master it, speaking or lip reading. Deaf people in the 1850s who were taught American Sign Language (ASL) at the American Asylum for the Deaf were as equally literate as their peers. As educators insisted on teaching oralism, deaf students’ academic achievement decreased.

ASL is not English, but has its own syntax and grammar. ASL is a separate innate language that belongs to people who become deaf at birth or before they learn to speak. The brain of a deaf child is structured to pick up ASL. Deaf babies with deaf parents use ASL like hearing babies, first babbling then signing five thousand words by the age of five, about the same as speaking children. But deaf children with hearing parents only have a vocabulary of fifty words by the time they are five. The argument was deaf people need to know the dominant language to get along in the hearing world. Alexander Graham Bell, who married a deaf woman, was a strong proponent of keeping deaf people separated from each other and mainstreamed them into the hearing world. He felt a separate language and culture should be eliminated at all costs. At first Bell’s feelings were seen as compassionate, but disabled people would instinctively understand that prejudice cut deepest when it came from the charitable not from the most bigoted. Deaf people began to take back ASL and the culture. Some deaf people say they should make their own world, and have their own schools with their own teachers and language.

California’s legislature passed a law requiring deaf students to be educated with groups of deaf peers taught by teachers "proficient" in sign. The governor vetoed the bill, which would have largely resegregated deaf students and separated schools or isolated classes. Judy Heumann says a lot could be learned from the deaf culture by the disability movement. As they overcome segregation, disabled people need to remember their sense of identity and the history of the struggle.

Chapter 4- A Hidden Army for Civil Rights: Pamela Wright came to Washington as Judy Huemann’s attendant. After two years of learning about the disability movement, she joined the Berkeley-based Disability Rights and Education Fund (DREDF), the first Washington lobbying office managed by people with disabilities. The ADA, rewritten by Wright and Senators Kennedy and Harkin, was narrowed in scope of accommodations, applying it only to new buildings and those being renovated; and dropping the punitive damages, unlike existing civil rights laws it would cost businesses money. Although the ADA received bipartisan support, it did not have a central figure or a pivotal moment for the press or the public to cling to. It did however, have a hidden army, many people had a disability or had a family member with a disability. President Bush, Sr. had three children with disabilities.

In 1988 when Evan Kemp and other advocates divided up the presidential campaigns, Kemp took the Bush campaign. Three months later at the Republican Convention Bush pledged, "I’m going to do whatever it takes to make sure the disabled are included in the mainstream." After the election, pollsters found that disabled voters who had switched to Bush had constituted up to one-half of the four million-vote difference of popular votes between Bush and Dukakis.

From 1983 to 1991, several hundred American Disabled for Accessible Public Transit (ADAPT) members were arrested for civil obedience protests. Wade Blank, the founder of ADAPT, was a friend of Evan Kemp, so Kemp could advise on the timing of the ADAPT’s marches so they would have the maximum impact to pressure Congress and the White House.

In March 1990, 475 people protested across the White House lawn and another 250 protested at the Capitol, but the Washington Post didn’t cover the protest even though there never been so many people coming together to protest disabilities’ rights. Speakers include Justin Dart, Evan Kemp, and former press secretary James Brady. After the ADAPT leader spoke, about three dozen protesters crawled up the capitol steps. The next day ADAPT demonstrators were planning to take over the Capitol, but Wright asked House Speaker Tom Foley and House Minority Leader Robert Michel to hear ADAPT demands at the beginning of the protests. Michel said, "I understand that you’re frustrated." An activist said, "We’re not frustrated, we pissed off." On July 6, 1990 the ADA was signed into law with 3,000 members "of the hidden army" were present. Bush kissed Evan Kemp on the forehead (Would George W Bush kiss Donald Rumsfield on the forehead?).

Chapter 5 -Integration: Out of the Shadowland: Autism affects 200,000 people in America. In 1979, a group of parents started Community Services for Autistic Adults and Children (CSAAC) to help their children live at home or on their own. CSAAC grew to sponsor fifty-two autistic adults working in 28 businesses. By 1990, workers in supported employment earned a mean wage of $3.81/hour and 81% worked 10 hours per week. Sixty percent had mild or moderate retardation. Although these workers decreased their dependency on entitlements, a savings of $11.7 billion, the federal government and states spent only $62.5 million on community-supported employment. The Behavior Research Institute, another approach for teaching people with autism, relied on punishments from slapping to Self-Injurious Behavior Inhibiting System, which is a band of electronic sensors wrapped around someone’s head giving them a sensation of a hard slap. This severe punishment became used more and more. To be effective the shock needs to get more and more severe.

In facilitated communication, a facilitator lightly holds the person’s hand and follows it over the keyboard. In time, the support moves from the hand to the arm, to the shoulder, to the back. The practice is controversial because there is no scientific proof. These successes led to the belief that autism is a physical, not a mental isability. School districts say this system is too expensive when they already spend $6,335 per disabled student annually, as opposed to $2,686 for non-disabled students.

Today families get support such as respite care and they believe their child’s protection is their ability to be self-reliant. By the time these children get out of high school they have inherited the same assumption that they have a right to integration and opportunity.

In 1973, 750,000 children between seven and thirteen were not in school; many had disabilities. The Education of All Handicapped Children Act (Individuals with Disabilities Education Act) passed in 1979 and requires teaching disabled students in the least restrictive environment possible. The Supreme Court acknowledged the right to an education, regardless of cost or severity of the disability. Parents began to speak the language of a civil rights movement and demanded the end of segregation. "Mainstreaming," placing students with disabilities in regular schools in separate classrooms came first, but today parent insist on "integration" and "full-inclusion." Studies show disabled children master social skills far more easily when they go to school with non-disabled children. Some argue if less money was spent on separate buildings and testing, spending could decrease. Nearly ten percent of all students are enrolled in Special Education with half categorized as having learning disabilities.

Chapter 6- People First: In 1994 10,000 self-advocates were members of 374 People First chapters and similar groups. In the first People First of Connecticut in 1990, resolutions were passed concerning the closing of state institutions, giving sick and vacation leave to people working on job sites and sheltered workshops and avoiding using the word "retardation" as much as possible, if it must be used say, " a person with mental retardation." In 1991 the Association for Retarded Citizens changed its name to the ARC, but it began as the National Association of Parents and Friends of the Mentally Retarded.

Self-advocacy is the new rights movement; both a part of the overall disability movement and a separate version focusing on people with MR. Self-advocates picketed state capitols protesting cuts in social services, struck sheltered workshops because they were being paid by the piece and started voter registration and education programs. The underpinning philosophy of People First is that, "anyone can be taught to make good choices and you might need some help, but you can talk for yourself." Some chapters are mainly places to socialize but others are dominated by political activism. Self-Advocacy comes down to the issue of "how much protection do people really need and is protection necessarily good, compassionate and progressive."

Self-advocacy began in Sweden in 1968 when the director of the Swedish Parent Association for Mentally Retarded Children had a conversation with a group of young adults and decided people with mental retardation can and should have a role in their own choices. Normalization, promoted in the U.S. at an influential White House conference, would lead to closing institutions and mainstreaming in every aspect of life. The first state People First convention was in 1974 where 560 people showed up. But self-advocacy progressed slowly; it was too new for people with disabilities and too scary for parents. As late as 1980, 33 states still prohibited marriage of people with mental retardation.

In 1992 the federal government began training two People First members to join teams of doctors and university researchers to do on-site reviews of federally funded programs that provide services to people with mental retardation. The Department of Health and Human Service provided $1.8 million between 1993 and 1996 to state advocacy programs to teach either self-advocates or their parents to fight for services. There have been some attempts to combine People First and other groups such as ADAPT. This union is slow; but both groups learn much from each other.

Chapter 7-The Screaming Neon Wheelchair: When a hang-glider had an accident leaving her a paraplegic, she and her hang-glider friends designed a wheelchair from aluminum tubing weighing 26 pounds, compared to the standard 50-pound or more wheelchair. This sleek, sporty wheelchair with a low-slung back, the Quickie, came in a rainbow of colors and began selling as fast as they could be made. Quickie users were neither sick nor objects of pity; they stood out in a different way and wanted maximum independence. Within ten years Quickie grew to a $40 million a year business and was sold to Sunrise Medical. Now all other wheelchair companies imitate the design. Previously Everest and Jennings had dominated the business, making the first folding wheelchair. But the company failed to respond to its consumers, entering the market for lightweight wheelchairs several years later. Quickie marketed by showing people using the chair in the office, on the basketball court and the dance floor. A power chair was developed by attaching a motor to the lightweight chair. Now companies are racing to develop a light, stylish, fast chair that is inexpensive The Ohio-based Invacare is the top-ranked wheelchair maker and the market leader of power chairs.

Machines can speak for the voiceless, see for the sightless and move and touch for people who can’t. Assistive technology is getting inexpensive and several companies are producing the hardware and software for it. Computers combined with robots can be controlled by voice, but they are very expensive Few banks give loans for assistive technology, but some groups such as UCP and Easter Seals give low-interest loans.

Tools, like the cochlear implant for the deaf and FES for people who are paraplegics, are fascinating but controversial, expensive and imperfect, while low-tech devices, like a lightweight TDD are about $100. Some argue believe a better use of money and technology would be to develop a better wheelchair instead of the FES.

The blind community is split over Braille. The American Federation of the Blind is advocating that states teach all blind students Braille. Others say Braille is inappropriate for all students because 85 % of legally blind people can read large type, but some ague some people who have low vision today may not have any tomorrow.

With new technology comes the need for new laws. Relay systems were not mandatory by all states until the passage of the ADA. Universal design, the idea of making things simple to use by disabled and nondisabled people, make things easier for everyone. Architects are including design features in houses from stairless entries to adjustable shelves, so that aging no longer threatens one’s ability to live at home.

Chapter 8- Up From the Nursing Home: In 1987, ten percent of the nursing home population (148,000 people) were between 18 and 64 years old; half as many as those living in traditional state institutions. Millions of others are one paycheck or social service check away. This threat makes a mockery of the disability rights movement’s hard fought gains of civil rights’ protections because if people are forced into nursing home, they will loose their basic rights. Most disabled people in nursing homes have developmental disabilities and the number is growing. In the early 1970’s, there were only a dozen post acute rehabilitation centers treating people with brain injuries but insurance began paying for these long stays and many of them converted to nursing homes. By 1992 there were 800 to treat people with head injuries with the average stay being fifty-one days, at an average cost of $1,069 a day. Some say people only stay until the insurance money runs out.

Nursing homes get more funding to serve fewer people than community programs though it is always cheaper to provide services in the community. Senator John Chafee (R-RI) introduced legislation to freeze funding at current levels for nursing homes with more than 15 beds. Due to strong opposition from parents and unions the bill was irreversibly stalled. Some reforms required nursing homes to focus on rehabilitation and others assured that Medicaid would subsidize institutional care for younger people. This is a double-edged sword because if a bed is designated for a younger person, it might be harder for the younger person to leave.

The word "attendant" have been changed to "personal assistant" to convey less dependency and more control. Although regulation and formal training might improve the quality of care, many people prefer an untrained assistant, because they take direction better. Abuse and neglect still exist by personal attendants and some people do not report it because they do not want to return to the nursing home. Some people are required to work at a sheltered workshop, no matter how inappropriate, to stay out of the nursing home. Some people just need a couple hours a day or less to be independent. States are reluctant to fund personal assistance because three quarters of unpaid relatives provide care giving, 70% are women, and these people would demand to be paid for this care. States that have larger programs, say these programs pay for themselves.

Assistant services are a continuum. The "Independent Living Model" where the consumer is in control is at one end and at the other; the medical model where care means the person is a sick, passive recipient. In the disability rights movement personal assistance is an item of social liberation, like a light wheel chair or a bus lift, not medical care. Advocates argue that an attendant should be a natural extension of the person with the disability.

Chapter 9- No Less Worthy a Life: By the time, a Georgia superior court judge ruled that Larry McAfee could kill himself, he was living in an Alabama nursing home. The thirty-four-old year quadriplegic made no attempt to move back although the ruling could be overruled anytime. Activists said he didn’t really want to die; he was lashing out at the health care system. With a voice-activated computer, McAfee could return to work as an engineer. He was in and out of nursing homes, using ICUs as a last resort, until to the money ran out. When it did end and he was forced to go to a group home, protesters took over the Medicaid director’s office and the Governor’s office, demanding home care for people with severe disabilities, receiving media attention. Finally Georgia started a new program, allowing people to hire and fire their own attendants. In another case a woman, 26, married and halfway towards her Masters with CP, wanted to die when she had a miscarriage, her marriage broke up, her brother died and finances forced to withdraw from school. The judge said the hospital should help her die, given " her helpless, and to her, intolerable condition." Eight years later she was still talking of wanting to die.

Medical ethicists, courts and the American Medical Association approve passive euthanasia, the act of withholding life-sustaining technology. Even the Catholic Church didn’t opposed McAfee killing himself, comparing him to someone who was "brain-dead." The argument was that turning off his respirator, and refusing medical treatment, was legal, was not committing suicide; it was dying from an injury that happened four years earlier. Disability activists were outraged, McAffe’s decision to die, with the court’s and the church’s approval meant their lives were not worth living either. The activists felt the court ruling told disabled people that they had a duty to die rather than be a burden on their families and society. The most militant disability activists are even wary of injury prevention specialists saying "We want more disabled people, not fewer." From a disability rights perspective the decision shows how the country fails to care for severely disabled people. Many people get "disability burnout", go through periods of depression, and become frustrated at an unresponsive health care system. If McAfee were able-bodied, he would have received counseling.

The joining of the Indianapolis right-to-life and disability activists was an uneasy marriage to oppose assisted suicide. Of the 1.6 million legal abortions each year, only 1 percent of these women had been told the fetus had a defect. When told that a fetus has a serious genetic defect, just fewer than half choose abortion. In 1972 the "death with dignity" bill, which passed the Florida House, but did not become law, would allow 90% of the people living in state intuitions might qualify for elimination. Finally, after several infants were allowed to die, C Everett Koop and the Reagan Administration said the practice was involuntary euthanasia.

Chapter 10- Crossing the Luck Line: Shapiro found Jim, a man he had met twenty years earlier. The fifth of nine children, he was placed in a home for troubled children but couldn’t be controlled. He was labeled "mental deficiency, idiopathic, severe" and institutionalized. The institution was awful for people labeled ‘high profounds,’ chained to chairs and unwashed. When Shapiro found Jim again he was still living there in a bedroom with three other men. Cutting grass in the daytime, he earned enough money to buy his own TV. But there was abuse at the institution and the victims could not communicate well enough to testify.

Jim was required to keep his room and the basement where he worked on his cars immaculate, all his time was scheduled, and if he didn’t check in he would loose privileges. His work productivity was measured and was picked apart. This rigidity made Jim aggressive and threatening. All his threats involved damaging cars. Jim was blamed for problems with several of the staff people’s cars and stealing tools. But there was never any proof. There was always an excuse for not finding Jim a community placement.

The staff wouldn’t consider him for community placement. He had mechanical brilliance but he was accused of breaking cars and stealing tools. Jim was a ward of the state and his legal guardian who was employed by the Hennepin County Department of Community Services, was strongly opposed to a community placement for Jim. He wanted Jim to be reunited with his family who wanted nothing to do with him when he was young.

When he was young, Jim’s family was told he was much more disabled than he was, and didn’t want anything to do with him. When Shapiro finally found his brothers and sisters, they found they had much in common; his brother was a mechanic. With strong advocacy from Shapiro, Jim received a new caseworker. Their first personal future meeting didn’t go well; the staff was very negative and Jim responded negatively. But the family came to his next meeting and plans began to be made. It took 19 months but Jim moved into an old farmhouse with three other men. As his move-out date came closer, the staff began to say positive things about him.

As the institution downsized where Jim had lived, the building started to fill up with prison inmates. The goal was to decrease the residents with disabilities and increase the prison population but still keep them both away from the family, friends and community, and restrict their liberties and freedoms.

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