By William G. Stothers
Over the years I have taken flack about the photograph of me that accompanies this column. Too angry, they said, too serious. We tried briefly using a smiley photo, but I hated it, and few others approved either.
Now, however, my appearance has changed and a new photo is appropriate. I did not choose this photo, but I am comfortable with it. I hope it suggests a person who is reasonably happy and yet serious, too. Because I am happy with my life. And serious about it also.
The business of my life is disability rights. And that is serious business indeed. People with disabilities have struggled for years to obtain and exercise the same rights enjoyed by other citizens. Gradually, we have acquired guarantees of those equal rights, most recently in the Americans with Disabilities Act. Yet, the provisions of the ADA are not universally observed, nor enforced, across this land.
Opposition to the law itself is active, even in the Congress of the United States. Efforts persist to weaken, roll back or eliminate protections of our rights.
The Supreme Court of the United States has upheld the constitutionality of the ADA. Now the Court is pondering another issue that poses an ominous threat to people with disabilities: physician-assisted suicide.
Last month, while hundreds of people demonstrated for life outside the Court house in Washington, the justices heard arguments for and against the so-called right to die. They will decide later this year whether states can permit doctors to help people commit suicide.
As people with disabilities, we have a crucial stake in this debate. Despite the ADA and other laws, people with disabilities live on the margin in this society. Most often invisible and ignored or shunned, we represent the worst fears of many non-disabled people.
"I could never live like that." "I would rather be dead than disabled."
It seems sometimes that our society is driven by a need to create a beautiful, healthy perfect human being. One that we all might become. A nation of people like those we see in television commercials.
And if you cannot be fixed up to fit into such a nation, then something will have to be done with you.
How often have you heard stories of doctors who told families to forget about a child with a disability. "He won't live anyway." "Put her in an institution and get on with your lives."
People with disabilities do not figure in the life view of most non-disabled people. Or the media either. Recently, the venerated New York Times published an end of 1996 look back at the sports champions of the year. Column after column of type listed champions from the Super Bowl to the national Cat Show.
Nowhere, though, was there any reference to people with disabilities. Winners of the Boston Marathon were listed, but not the wheelchair winners. And none of the winners of events at the Paralympic Games were listed.
Could the New York Times not have known about the Paralympic Games?
Perhaps they þ the New York Times and other media, other people without disabilities -- don't consider the sports activities of people with disabilities to be real sports.
Perhaps they don't consider people with disabilities to be real people. Perhaps they think we are less than fully equal, fully alive. You know, the Jerry Lewis attitude that we are half-human.
That's a scary thought when you think about the stories of doctors and other so-called health professionals who help and even encourage people to die. Sometimes they help people die without even asking.
Think about it: Government programs keep millions of people with disabilities in a state of dependency at a cost of more than $200 billion a year. And everybody complains about the cost. Oh no, they say, we're not complaining about people with disabilities. We wouldn't do that. They pat us on the head and send us to camp. (What kind of camp?)
What are we to think? People with disabilities are kept in poverty on the margins of society, still excluded and discriminated against.
We are the scapegoats for the era of scarce resources.
As I said, this is serious business. But I can still smile.
William G. Stothers is editor of MAINSTREAM.
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