Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, September 6, 1993 TAG: 9309220314
SECTION: EDITORIAL PAGE: A7 EDITION: METRO
SOURCE: MIKE ERVIN
DATELINE: LENGTH: Medium
As a person with muscular dystrophy, or MD, the greatest pain I have silently suffered is the distortions about life with a disability that Jerry Lewis and the telethon sell to the world.
This distortion is more than just personally offensive: It is immeasurably harmful. It does more to make my life - and the lives of millions of people with disabilities - unnecessarily difficult than any single other factor.
Jerry Lewis has referred to having MD as a ``curse'' and to someone who has it as ``half a person.'' If you have amyotrophic lateral sclerosis (Lou Gehrig's disease), he once said on the telethon, ``you might as well put a gun in your mouth.'' The message is loud and clear: Life with muscular dystrophy (or any disability) is not worth living.
Jerry's dehumanizing stereotypes are a placebo that comforts Americans and enables us to avoid the social complexity of disabilities. How soothing it is to believe that, whatever the obstacle a disabled person faces, giving Jerry $25 will fix it.
But some telethon sponsors don't even have wheelchair-accessible facilities. One shop in my neighborhood has a coin canister for Jerry's Kids on the counter and steps at the front door. A local pizzeria took out the wheelchair ramp when it remodeled and put in stairs while its proprietor was giving the telethon big checks on camera.
This hypocrisy would escape anyone who buys the telethon premise, as millions obviously do. Why go to any lengths to accommodate someone who is cursed? Why go to any lengths to hire half a person? Why don't we just follow Jerry's advice and put guns in our mouths?
The Muscular Dystrophy Association so completely accepts these stereotypes that it will not purchase respirators - equipment many people with MD will eventually need to continue living. For those with MD, there is obviously no higher priority than this piece of equipment. But for those who set MDA policy, it's not a priority at all.
The self-serving stereotypes on which Jerry and the Muscular Dystrophy Association have built their charity empire make them the biggest hypocrites of all. How else could they purport to be the great champions of people they perennially insult and devalue?
Some say that in the final analysis, finding a cure for MD is so important that the end justifies any means. If cure and treatment are so vital, why do we allow them to hinge on the success or failure of a Vegas minstrel show? The same approach to the AIDS epidemic would be rightly viewed as horrifying. The very existence of the telethon shows how insignificant treatments and services for people with disabilities really are in our national consciousness.
I would not trade my life for anyone's, especially Jerry Lewis'. And I expect a whole lot more than a pat on the head from Jerry and a life of quiet desperation. I refuse to believe that people should grovel, sing a pretty song, or even have to explain themselves as the price for living.
When faced with death or life on a respirator, I will absolutely choose life. I will choose life - and dignity. I will never accept the telethon's proposition that I must choose one or the other.
\ Mike Ervin was a Muscular Dystrophy Association poster child in 1962. He is founder of Jerry's Orphans, a national organization of people with disabilities opposed to telethons.
Knight-Ridder/Tribune News Service
by CNB