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Past, present, future; an advocate's perspective.


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. This cycle of expectation and fulfillment puts incredible pressure upon various systems -- education, health care, human service -- to meet and exceed these expectations. This evolution has been generally empowering to children with disabilities, leading to expanding horizons of challenges and opportunities. What some of us were able to do 20 or more years ago, through persuasion, guile, trickery, innocence, fraud, humor or just plain stubbornness, should be commonplace for the next generation.

Through technology, societal understanding and civil rights protections, the next generation of persons with disabilities should have every right to succeed and to fail, rights our fellow able-bodied citizens take for granted.

Today, we find ourselves immersed in issues and not just focused on individuals. While the media still tend to sensationalize about some persons with disabilities as good "human interest" stories, we have shifted their attention and attitude ever so subtly to the understanding of empathy with issues like inaccessible, insufficient public transportation and totally inadequate housing which force thousands of Americans with disabilities to live, as Allan Bergman of United Cerebral Palsy Associations describes them, as "domestic hostages," living in nursing homes or socially segregated living arrangements unbefitting their situation in life. The more we discuss these issues and explain them to the public, the more we will succeed in public policy debates, for no well-informed American, with or without disabilities, will accept the substandard life now offered to many persons with disabilities today.

Unemployment rates of 70 percent are intolerable in America, but that's precisely where we find nearly 20 million adults with disabilities: unemployed and dependent on the American taxpayer for a minimal satisfaction of only their most basic needs, with little attention given to their desires or their dignity.

High school graduation rates of 62 percent for adults with disabilities, as compared with rates of 82 percent for adults without disabilities, illustrate another major barrier to employment and economic independence which will take several generations to correct. Remember, it's only been 12 years since the Education for All Handicapped Children Act took effect.

Poverty rates for adults with disabilities, fully two and a half times that of adults without disabilities, tell us we have major challenges ahead in breaking the disability-poverty cycle. At present, if you are poor, you stand a high chance of acquiring a disability; and, if you have a disability, you stand a high chance of becoming and remaining poor.

How long will America tolerate these disparities? As we re-examine our priorities and as the politics of disability mature, I predict that the 1990's will see the amelioration of the quality of life for persons with disabilities at a far more rapid rate than in the 70's and 80's.

Our concerns for the 90's will focus on coordinating and streamlining the huge service funding and delivery system for persons with disabilities, including programs such as Medicaid, Social Security and Vocational Rehabilitation; providing health insurance and care to all Americans; eliminating the notoriously exclusive "pre-existing condition" clause from health insurance coverage; and seeking real empowerment of persons with disabilities.

For service providers, the real challenges will be to evolve quickly into a customer-service orientation. Service providers must recognize the consumer with a disability as a customer and continually meet or exceed his/her expectations or face going out of business.

Finally, the opportunities presented by assistive technology must be made affordable and available to persons with disabilities so they can take advantage of its brightest promises for independent living, education and employment.

Personally, I feel I have grown spiritually, emotionally and, I hope, intellectually since the tapings in 1972. To experience life in the 70's and 80's with a disability was to see first hand the very face of America changing. Over the next 20 years, with the power of ADA behind us, the landscape of America will change further.

I practiced law for nearly 10 of the past 18 years, as an environmental lawyer and then as a disability rights lawyer. I've been president of a consulting firm specializing in disability and employment programs for Fortune 1000 companies, General Counsel and Vice President of the National Easter Seal Society, and now, Chief Executive Officer of United Cerebral Palsy Associations. Each job has presented expanded responsibilities in a disability rights and services career. Ny disability has simply been an asset, a positive characteristic, allowing me slightly more insight than my friends and professional colleagues without disabilities.

And, I have been deeply involved in the disability rights and independent living movements, from board service with independent living centers in Kansas City and Chicago, Operation Real Rights and the League of Disabled Voters, to participation in a leadership role in a presidential candidate's unsuccessful primary election campaign. I have been privileged to meet and know true disability rights pioneers like Dr. Frank Bowe, Dr. Ed Roberts, Judy Heumann, Marca Bristo, Lex Frieden, Justin Dart, Evan Kemp, Jay Rochlin, Paul Hearne, Robert Williams, Debbie McFaddent, Dr. Susan Daniels, Dick Sheppard, and hundreds of others. Many times I really can't believe how fortunate I am.

I am married to a beautiful photographer, and I have helped her raise her daughter, who made us grandparents in August of 1989. I'm too young for this, I plead, but it still won't change history or the facts.

I will always be deeply involved in disability issues. I work for UCPA, a nationally respected service provider and advocate for persons with disabilities, with an excellent staff and volunteer leadership committed to rendering to persons with disabilities control over and choices in their lives. In the words of another UCPA staff member, Jim Hollahan, "Persons with disabilities have the right to live, learn, work and play in their communities." With such deeply empowering values, I feel very comfortable working in this environment.

Eighteen years later, the beard is gone but the moustache remains, the hair is thinning slightly on top and greying at the temples, weight has been added slowly around the middle, but the dignity of having a disability in America remains high. I am proud of myself, my fellow Americans with disabilities, United Cerebral Palsy Associations and America, for the successes we've had over the past 18 years.

Now, I'm ready for the challenges of implementing the ADA, empowering persons with disabilities and full societal integration. Can we really accomplish this by the year 2000? Let's try.
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Author:Kemp. John D.
Publication:The Exceptional Parent
Date:Jan 1, 1991
Previous Article:Inclusion: a new reality.
Next Article:Augmentative communication 1991.

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