Fight Back for Independence
People once referred to as "mentally retarded" are in rebellion, not only against the label but against the perception that they are incapable of making independent decisions and living on their own.
As individuals, they're demanding to move into their own homes and take decent-paying jobs. Collectively, they're calling for the closing of institutions created to house them and have formed "self-advocacy" groups across the country.
They are also influencing the way other people regard and refer to them.
For Nancy Ward, who was labeled mentally retarded as a child, an early victory came in the mid-1980s when she and other advocates persuaded the Nebraska state legislature to eliminate words like moron and idiot from state regulations.
Terminology is very important to people trying to change perceptions. Ward is a national leader of "self-advocacy," a term adopted to reflect the desire of people with a variety of disabilities to have their voices heard in decisions affecting their lives. Self-advocates don't like any labels but prefer "developmentally disabled" over "mentally retarded," which they view as pejorative.
Clinically, "developmental disability" refers to any lifetime handicapping condition that occurs before age 18 that significantly impairs learning, language skills, mobility and the ability to live independently. It includes mental retardation but also autism, cerebral palsy, epilepsy and neurological impairments.
The self-advocates' agenda, however, is not without controversy.
While some parents and professional caregivers still use the term "mentally retarded," their contention with self-advocates goes far beyond language. Some take issue with the self-advocates' national goal of closing institutions for the mentally retarded and placing the residents in small group homes and other community settings.
A group of parents in Connecticut is fighting an attempt by a self-advocacy group called People First to close a facility there. "What we find most offensive about People First is it strives to speak for all people with disabilities without taking into consideration their needs," said Tamie Hopp, executive director of Voice of the Retarded, a national group of professionals, parents and other family members based in a suburb of Chicago.
"We simply realize there are some people best cared for in a congregate setting," she said. Some people, for instance, require feeding tubes or have other physical conditions that require the constant medical supervision available in an institution but not in a community residence, she said.
Parents are the best judges of the needs of individuals who are not able to communicate their own wishes, Hopp said.
Self-advocates maintain that far more people deemed developmentally disabled can assume a level of responsibility for decisions than is generally believed. Even individuals who are unable to talk can express their wishes with spelling boards or nods of the head, they say.
"There are some people who say their son or daughter could never do what I do," said Ward, recalling her childhood years. "That's really hard for me to hear because they don't know how I struggled to get where I am."
After being labeled mentally retarded, Ward attended special-education classes throughout school. She later lived in a group home and worked at a sheltered workshop, a highly supervised vocational setting that gives routine tasks to people thought to be unable to compete in the open marketplace.
It was her angry response to a well-meaning television appeal that prompted Ward, an early self-advocate, to join a People First chapter in Lincoln, Neb., in the late 1970s. She was irked at a television commercial that showcased children participating in the Special Olympics. "It was like, 'Give us money because you feel sorry for us,'" she said of the ad.
Ward learned how to write a petition, which she mailed off to a foundation sponsoring the commercial and to then-president Jimmy Carter. The commercial was later pulled.
Self-advocates also managed to convince the state senate to reduce proposed cuts in services from $50,000 to $5,000, she said.
Since then Ward has testified before state legislatures and taught others how to lobby and speak up for themselves. She was founding chair of the national group Self-Advocates Becoming Empowered (SABE), which was formed in 1992, and she now heads People First of Oklahoma.
Self-advocates claim they are making a significant impact on the way society treats and regards them, from forcing the closure of three institutions in Tennessee to creating an instructional card in Nebraska that individuals can carry with them to assert their rights if ever confronted by police. Throughout the country, self-advocates are helping form policies as members of boards of agencies that serve them.
Attitudes among parents, professionals and policy makers are shifting gradually, say Ward and others in the self-advocacy movement.
"When you see people with disabilities who've never spoken out for themselves tell you what they like and don't like, your attitude toward them changes and their view of themselves changes," said Steve Holmes, a nondisabled person working as administrative coordinator of the Self-Advocacy Association of New York State.
He once worked at an institution for the mentally retarded and then headed a local chapter of the ARC, a national organization that provides housing, employment, advocacy and other services for the developmentally disabled. The ARC was originally founded as the Association for Retarded Children (then Citizens) but now uses only the acronym. Now Holmes works for a board of directors made up of self-advocates.
Holmes already is looking to the next stage of empowerment for people with disabilities, what he calls "self-determination." This goes beyond individuals speaking up for themselves to controlling what happens in their lives, from choosing where they live and work to hiring the people who care for them, he explained.
In this model, agencies would build services around individual needs and desires instead of around available buildings and programs. "People are challenging some of the basic tenets of the system," he said.
The range of possibilities keeps expanding for James Meadours, who attended his first self-advocacy meeting in Tulsa, Okla., about eight years ago.
He had been living in a community residence with nine other developmentally disabled people and caring for greenhouse plants at a sheltered workshop that paid 50 cents to $2.83 per hour. "I started asking people what my other choices were," he recalled.
Meadours applied for competitive employment in the community with
the help of a job coach and began earning $5 per hour as a dishwasher. He
later moved into his own apartment. "I wanted to be known as a person
first, not a disability," Meadours said.
For background on Self-Advocacy see this related article.
Posted November 4, 1997