A Growing Movement
Self-advocacy evolved out of a recreation program run by parents in Sweden that encouraged their mentally retarded, or "developmentally disabled," sons and daughters to draw up a list of what they wanted from staff.
The notion of individuals getting involved in their own services spread to England, and then to Canada, where people with mental retardation from Oregon picked up on the idea and organized a conference of their own in 1973. Organizers decided to call their movement "People First" to emphasize that their disabilities come second, according to Bonnie Shoultz, a self-advocacy adviser who has written a short history of the movement.
This was a novel concept at a time when the ARC, a national organization that provides services for the developmentally disabled, then known as the Association for Retarded Children, saw itself as an official representative with the motto "We speak for them," Shoultz said. "The idea was that these people didn't know how to speak for themselves."
Now some state ARC offices host self-advocacy coordinators, and the organization has officially changed its name to just the initials at the request of self-advocates offended by the "retarded" label.
Self-advocates have created their own organizations in more than 30 states, Shoultz said, and formed the national organization Self-Advocates Becoming Empowered (SABE) in 1992.
SABE has launched a campaign to close all the institutions that house the developmentally disabled and has developed supportive materials for self-advocacy groups around the country. At the urging of a member who had been on death row for a murder he later was found to have not committed, SABE also is taking a look at the criminal justice system's dealings with people who cannot read and may be easily persuaded to make false confessions.
Self-advocacy organizations, originally created by people with developmental disabilities, also are beginning to include people with other disabilities.
"We're breaking the barriers between physical and cognitive disabilities," said Theresa Moore, coordinator of People First of Arizona. "Oppression is something we all experience."
Moore has cerebral palsy and debilitating arthritis that sometimes requires her to use a wheelchair. She is urging People First members to support independent living centers for the physically disabled, to push for wheelchair-accessible public transportation and to seek funding for moving physically disabled people out of nursing homes and into community residences.
Posted November 4, 1997