Disability rights: The fight to stay alive
Chicago—The U.S. disability rights movement has a rich and diverse history. It is the only class of people that you can suddenly become a member of at any time or place. It does not discriminate by color, sex, income level, age, ethnicity or sexual preference. But for those who have had no experiences with disabled people, there is often no knowledge of the movement’s history and sometimes lots of misunderstandings.
One of the heroes of the movement was Ed Roberts, who had polio as a child and was mostly paralyzed.
Fortunately, his mother was a good advocate. Ed got into the University of Calif. Berkeley in 1962 but the university had no place to put him as he slept with an iron lung. They put him in the infirmary. The other students formed a group called the Rolling Quads and started making demands: curb cuts, accessible buildings, lifts on buses. They had a huge impact on the university, then on the city of Berkeley. As they graduated, they formed the first center for independent living in the country.
The Rehabilitation Act of 1973 stated that any facility receiving federal money had to be accessible. The Health Education and Welfare (HEW) Secretary at that time, Joseph Califano, blocked its enforcement. In response, people with disabilities sat in at the ten regional HEW centers. In San Francisco they took over the HEW office and did a 25-day occupation. The Black Panthers smuggled in food for them. This was the longest occupation of a federal building.
ADAPT was founded in Colorado in the 1980s. Leader Wade Blank had been involved in the civil rights and anti-war movements. ADAPT has chapters all over the country. Chicago ADAPT demanded lifts on buses and shouted down Chicago Transit Authority (CTA) officials at board meetings. They won in the courts about a year before The Americans with Disabilities Act (ADA) was passed in 1990, with a mandate that the CTA would have to become accessible over time.
ADA did not signal the end of our struggle but a new beginning. ADAPT fights to keep people out of nursing homes and in the community. We fight for community and home supports so the disabled can live independently. We fight to have abusive institutions closed and have won the closing of several of them.
The ADA has been under attack since it passed. Its protections have eroded. In one case, Chevron is claiming that a man would be doing harm to himself by taking a specific position. The ADA provides that an employer cannot discriminate against someone with a disability, which is exactly what Chevron is trying to do. If Chevron wins, it will weaken the ADA by allowing employers, not employees, to decide health issues. In the sections of the ADA related to employment, the scope of the act has been so drastically narrowed that only a small amount of the estimated 54 million disabled Americans remain covered.
Among the most serious problems that the disabled face are the cuts in Medicaid that went into effect July 1, 2012. Medicaid was bad before the cuts, now this vital lifeline has been cut even more, affecting those who need the services the most. Many people have been cut from the program; dental care has been cut altogether except for emergencies; medical supplies have been cut and/or quantities limited; special permission is mandated to get more than four prescriptions; people are being thrown out of vital home care programs because they are no longer “disabled enough”; the hours of personal assistants have been cut, leaving many disabled without the help they desperately need. Tragically, the waiver program for technology-dependent and medically fragile children has been gutted, meaning some children can no longer live at home. To have to give up your child to an institution is a horrible price to pay for the government’s inhumane decisions.
Movements for social change contain seeds for a new society—the positive in the negative. The disability rights movement, for example, shares much with other movements, including the civil rights and women’s movements. Disability activists are inspired by these movements.
The disability rights movement gives us a glimpse into what a new society could look like and an idea of what it means to be human, to have new human relations. It makes me think of a quote from Karl Marx: “from each according to his ability, to each according to his needs.” People with disabilities show more than anyone how this is true. You can’t apply equal standards to people because they are not equal. People can’t compete on an equal basis. The disability rights movement shows how ridiculous this idea is and, in doing so, points to what a new society could be.
—Disability rights activists