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A Personal Story




A Different Kind of Civil Rights- Or is it?

When I put down the words Civil Rights, what do you think of? Dr. Martin Luther King, Jr. and the struggle for black rights? Or maybe Gloria Steinem and the Equal Rights Amendment come to mind. I bet what you don't think of is people with disabilities. Historically an isolated and hidden group, disabled people have been more vocal than you might think. Like many minority groups, their struggle for civil rights sprang up in the sixties and continues today. From the independent living movement in Berkeley to student protests at Gallaudet University in D.C., check out just how active these activists have been.

It's the 60s and it's Berkeley, a time and a place known for its challenge to the status quo. This was the perfect setting for a man named Ed Roberts to challenge the living conditions of people with disabilities. Up until that time, it was relatively unheard of that a disabled person could live on his/her own. But he and a group of disabled friends got a house on the campus of U.C. Berkeley in California and started the ball rolling. Once they had this independence, they realized the need for changes in the community. In a wheelchair, it was impossible to get up onto the curbs. Getting the city to make "curb cuts" became the first symbol of accessibility in the disabled community. The fight for accessibility in all areas of public life has been the motivating force behind disabled activist groups ever since.

One of the biggest advocacy groups since the 80s for disabled people was ADAPT (American Disabled for Accessible Public Transit). If you are in a wheelchair and need to take the bus, but it has no wheelchair lift, guess what? You can't take the bus. It's that simple. By 1983, accessible transit was the number one concern for people with disabilities. The Carter Administration had mandated that all buses must have a lift. But transit companies complained it was too expensive and in the 1980's the Reagan Administration sided with the transit lobbyists, making lifts an optional service. This meant that public transport companies did not have to provide access to their public buses. But just because you are in a wheelchair does not mean that you can't fight back.

In 1983, ADAPT held a national campaign for lifts on public transportation. Members chained themselves to inaccessible buses. In San Francisco, 130 disabled activists were arrested for blocking cable cars. They equated their struggle to the civil rights of blacks in the 60s saying, "[W]e can't even get on the back of the bus." Across the nation, grassroots organizations took direct action against transit companies, and little by little, state by state, made gains for their cause. I met with Bob Kafka, a member of ADAPT in Austin, Texas. He remembers getting arrested in Washington D.C. for protesting. According to Kafka, after more than seven years of grassroots organizing and protests, 60-65% of the country's buses had lifts. The Americans with Disabilities Act would force the other 40% to comply. And the movement for disabled civil rights continued to explode.

Although ADAPT focuses many of its issues on people with wheelchairs, the movement is about preventing discrimination for all people with disabilities. An uprising at Gallaudet University, a school for deaf students, was another example of direct action for a change. In its 124 years, Gallaudet University had never had a deaf president. In 1988, it looked like that was about to change. But instead of hiring a deaf president, the Board of Trustees chose the only hearing candidate for the job. The Board sent out its message loud and clear that being deaf was a barrier to being president of a deaf university. Hmm, that doesn't make much sense. The students at Gallaudet didn't think so either.

So students led a week-long protest called Deaf President Now (DPN). Students boycotted classes and attended rallies, speeches, and marches. Again, their strategy was much like the student protests of the sixties. DPN laid out very clear objectives, which included the selection of a deaf president.

Their strategy worked and I. King Jordan, one of the original deaf candidates was selected. After the decision was made, a reporter asked the new president if he thought that being deaf would be an obstacle to his work. He responded, "Deaf people can do anything hearing people can do… except hear." Within a year of the uprising at Gallaudet University, three different acts were passed supporting the rights of people with disabilities, including the Americans with Disabilities Act.

The Americans with Disabilities Act (ADA) was created to prevent discrimination against disabled people and give them access to all public services. Before its passage, it was not illegal to discriminate against disabled people. This meant that if you were in a wheelchair, you might be asked to leave a restaurant or movie theater because people thought you were a fire hazard. And if you didn't leave, you could be arrested for trespassing! Of course, none of that would matter if there were steps leading into that movie theatre, because you wouldn't even be able to get in!

As with any major challenge to the status quo, getting the ADA passed was not an easy road. When it reached the House of Representatives, lobbyists argued that it cost too much money to make the necessary changes to public services and structures. Once again, disabled activists used the tactics of direct action and organized more than 1,000 disabled people to march in Washington, D.C. To show the need for accessibility, 70 disabled citizens crawled up the steps of the Capitol Building. 105 activists were arrested that day. Their tactics worked and within six months, the ADA was passed in 1990. It was a huge victory, and its passage showed the determination and self-empowerment of the disabled community.

Even with the passage of the ADA, there is still a long way to go. The most urgent issue facing disabled people today is long-term care. Right now Medicaid is the main funding source for the disabled community. But the policies are outdated and prevent the freedom of choice. Because of current policy, many disabled people are put into institutionalized facilities. The policies that keep people "warehoused in institutions" (a term used by ADAPT) don't seem to make any sense.

I spoke with Ray Aguilera, a 25-year-old disabled activist in California. He explained that it costs less for a person in a wheelchair to hire a personal attendant than for that person to live in a facility like a nursing home. Yet, 75% of Medicaid money goes to nursing homes and state institutions. Only 25% goes to fund at-home attendant care. This means that if a disabled person chooses a personal attendant but the state doesn't have any of that 25% funding left, the only other choice is to live in an institutionalized facility or pay for the attendant him/herself.

What does it mean to have a personal attendant? For someone with mobility difficulties, it could mean assistance with dressing, cooking, and toileting. For someone with a cognitive disorder, it could mean repeated reminders or help with daily chores. It also means independence and integration into mainstream society. If a disabled person is in an institution, they will receive care, but at the same time, all of their personal liberties and privacy will be taken away. Most importantly, disabled people are not being given a true choice to decide on their own care.

To combat these outdated policies, ADAPT has renamed itself American Disabled for Attendant Programs Today. They have drafted a bill (MiCASSA) that has already gone to Congress. If passed, this legislation would allow disabled people to choose how they want to use their Medicaid funding. The voice of the disabled community is asking to have a "real choice."

There is opposition to MiCASSA from the medical field and nursing homes because they do not want to lose the funding they receive from Medicaid. There are also some unions that oppose this change because they are afraid that care for the disabled will become privatized and people will lose jobs. But there will still be a need for care; it will just take a different form.

Ray Aguilera reminds us of the importance of civil rights in the disabled community. "It is… a group that anyone can join at any time." Approximately 50 million people have disabilities, making it the largest minority group in the country. Aguilera thinks, "It is surprising that it has taken this long for them to form a community." But now that they have, I think it is not surprising that they have joined so many other minority groups in their quest for civil rights. This quest will continue until disabled people have access to all aspects of American life.


Please email me at: jennifer@ustrek.org


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