Magazine article The Exceptional Parent

Past, Present, Future; an Advocate's Perspective

Magazine article The Exceptional Parent

Past, Present, Future; an Advocate's Perspective

Article excerpt

PAST PRESENT FUTURE

Today we have the Americans with Disabilities Act (ADA), the first comprehensive civil rights law for persons with disabilities, prohibiting discrimination in employment, transportation and public accommodations. We enjoy strong assurances that buildings will be built accessibly, schools will educate our children with disabilities, and accessible, affordable public housing will be provided to persons with disabilities without discrimination. Public institutions -- warehouses, primarily of persons with developmental disabilities -- have more or less "de-institutionalized," and now we face the final stages of community integration by "de-institutionalizing" the mini-institutions of congregate and group homes, sheltered workshops and enclaves, and by funding streams that favor congregate care over individual needs. We have much to be proud of, and a long, long way to go.

What has happened over the past 18 years to bring us these successes? The Vietnam War brought home nearly one-half million soldiers with disabilities, people who weren't about to accept second-class status for fighting in an unpopular war. Two education cases in the early 1970's, Mills vs. D.C. Board of Education and P.A.R.C. vs. Pennsylvania, granted new rights to parents seeking a free, appropriate, public education for their children with disabilities. Architectural access laws were put on the books, though not stringently enforced, prompting some to begin to design and build barrier-free environments. And, society's general sensitivities evolved through the racially exclusionary 60s and the feminist movement of the 70s to a heightened awareness and desire for fairness and equality for persons with disabilities. Most of all, through the independent living movement, founded by Dr. Ed Roberts in California, the first Center for Independent Living (CIL) was opened, with persons with disabilities making up a majority of the board and staff. This movement quickly spread across America, where today over 300 CIL's, with some federal assistance, operate programs of peer counseling and support, housing and housing referral, equipment loan and repair, independent living skills training, attendant care and personal assistance management and training, disability awareness training, and a variety of employment-related programs. The CIL's focused heavily on the empowerment of persons with disabilities. The only step left on the continuum is full community integration.

In 1991, we have transformed terminology, self-esteem, and assistive technology into tools of integration and acceptance. Eighteeen years ago, we panelists regarded ourselves as "handicapped" and others as "able-bodied." Today, we regard a "handicap" as something external and limiting to us -- an architectural barrier (like a curb without a ramp), a slippery, round doorknob, or a negative stereotype about our capabilities. It is distinct from a disability, which is a medically-provable condition which we possess. If we evolve from the "individual defect" paradigm described by Gerben DeJong, wherein the consequence of a disability is the assumption of a lesser, more dependent status, to his "technology/ecology" paradigm, wherein disability is defined as a "lack of fit" between an individual (regardless of disability) and the environment, we will have unshackled ourselves from the unfounded burdens of responsiblity for the consequences of our disabilities. I refuse to apologize for my disability any more. If I encounter, shiny, slippery round doorknobs which I can't open with my clamps, I won't say it's because of my clamps that I can't open the door. In the technology/ecology paradigm of disability, it's the lack of a lever door handle, not my use of artificial arms and clamps, that is the barrier.

Over the past 18 years, as opportunities have been created and taken advantage of, parents have grown to expect more for their children with disabilities. …

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