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"Rewriting the Myths, Redefining the Realities"

 

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From Where I Stand:

America's Hidden Disability Community

by Homer Page

 I began school in the fall of 1947 in Troy, Missouri, a small rural community north of St. Louis. As nearly as I could determine I was the only child in the class of 50 who was a person with a disability. I have been blind since birth. In the next several years a few children with disabilities joined the student body at my school. There was a girl who used a wheelchair, two children who we would now recognize as having developmental disabilities, a boy with a heart condition, and a girl with juvenile diabetes. In the half century since I was a child, the educational and societal understanding of what constitutes a person with a disability has changed dramatically. Persons with disabilities have made great progress toward full acceptance and participation in our schools, economy, and political institutions, but this progress has brought a greater awareness of how large the disability community is. Many who were not identified as persons with disabilities are, in today's world, clearly defined as a person with a disabling condition, and many of them are struggling.

A half century ago many persons with disabilities were institutionalized. My grandmother spoke of a neighbor who "went crazy." She was taken to the State Mental Hospital in Fulton, where she lived out the rest of her life. An adolescent who could not read committed petty crimes and was sentenced to the Youth Reformatory in Booneville. A foster child who was raised by my grandmother was a drifter. Occasionally he came to visit. He called himself a "bum" and we felt sorry for him. We now understand all of these individuals to be persons with disabilities. In the past they were hidden in our institutions, prisons, or among the more honorable class of the homeless created by the Great Depression, but now they are less hidden and present us with a practical and moral challenge.

Estimates suggest that from one-third to one-half of the current homeless population are persons with disabilities. Professionals working in the criminal justice system have told me that from 10% to 80% of today's inmates have disabilities. As we age, we develop a variety of disabilities. Medical science is saving the lives of newborn children, persons who are traumatically injured, and older persons who previously would have died. In many cases these individuals live with serious disabling conditions. There are new or previously undiagnosed people living with disabilities including crack babies, those born with fetal alcohol syndrome, and persons with AIDS. We are just learning about Attention Deficit Disorder, (ADD). Approximately ten percent of our children are diagnosed with a disability, but only two to three percent of them have traditional disabling conditions. Another group of persons suffer severe reactions to chemicals in the environment. How do we respond to this wide array of conditions that until recently were not even known? They place strains on our human services network, financial resources, and capacity to accept and understand the limitations with which others must live their lives.

The response that is needed is difficult. In many cases it will be expensive. We are being asked to consider and have compassion for persons who may be hard to understand and harder still to care about. Yet it may be costly to ignore them. People with mental illness can be dangerous to themselves and occasionally to others, when they live on the streets without adequate support services. We need community programs that are adequately funded to provide the support that these suffering persons require. The medications that keep persons with AIDS alive are expensive, but should they be left to die? Elders need care to remain independent. Children with learning disabilities, behavioral disorders and attention disorders need skilled teachers to help them develop to their full potential. Persons with developmental disabilities need the support that will permit them to live a meaningful life. Providing for all these needs is difficult, especially now when our economy is doing poorly and our government sector is in crisis; yet we trust that things will improve, and we need to be prepared to face-up to the challenge presented by the millions of Americans who need our help.

A few years ago a young man went on a shooting binge in Denver. Before he took his own life, he killed a policeman with a young family. As the story emerged, we learned that this destructive man grew up in a high achieving family. High expectations were placed on him, but he could not meet them. He could not learn to read. A well-meaning adult relative tried to help him learn. The relative spent a year working with this boy, but he did not learn to read. He became progressively more frustrated and alienated, until he destroyed his own and another man's life.

The pain that exists in the world inhabited by this new disability community amazes me. They are not the successful blind man or the accomplished deaf woman. They do not work, or serve on a committee. They are among the most impoverished and alienated in our society and they are our parents, brothers and sisters, and children. They are not strangers. They are our family.

 

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