PERSONAL PERSPECTIVE : An Open Letter to Jerry Lewis: The Disabled Need Dignity, Not Pity

Dear Jerry Lewis:

I was born with a muscular-dystrophy-related disease, and your Labor Day telethons have always turned my stomach. I actually appeared on one in the late 1960s, as the Muscular Dystrophy Assn. poster child for the New York metropolitan area.

Now I am 28, a Harvard graduate, a self-employed writer, married, still in a wheelchair. I can finally formulate what I felt as a child: Despite your undoubtedly honorable intentions, you are sadly misinformed about disabilities. Moreover, you are misleading the able-bodied population while offending the rest of us.

You and your organization have done much good, to be sure, and I myself have benefited from your financial resources. But people with disabilities do not need or want to be characterized as objects of pity. Last year’s Americans With Disabilities Act mandates our equal participation in society, including employment. What we need is to stress competence--not outmoded notions of charity.

Speaking of “the dystrophic child’s plight,� or calling disability a “curse� reinforces the offensive stereotype that we are victims. Wheelchairs are not “steel imprisonment,� nor are we who use them “confined� or “bound�; they are liberating aluminum and vinyl vehicles. Similarly, phrases like “dealt a bad hand� and “got in the wrong line� are unfair. Disability is not “bad� or “wrong.�

Other examples abound: Being dressed or fed by others is a hassle, but not an “indignity.� There is no shame in needing others, no loss of dignity. Our needs are more personal and continuing than other people’s--nothing to be ashamed of.

Saying that they are is to say our lives are somehow inferior. Is this how you feel? You have said our lives are “half�--we must learn to “do things halfway,� be good at being “half a person.� Even slaves in the Old South counted for three-fifths of a person.

Perhaps more disturbing is your use of the archaic word “cripple.� While some of us have recently taken it on as a kind of hip slang among ourselves or for political purposes--much like the gay-rights group Queer Nation--this does not mean you should.

Worse still may be your ubiquitous “Jerry’s Kids�--never more absurd than when followed by “of all ages.� Yes, a lot of MDA’s clients (not necessarily “patients�) are kids, but do you know how hard it is to become, and be treated as, a self-respecting disabled adult in this society? You may argue it is a term of affection, but you wouldn’t refer to your late friend Sammy Davis Jr. as your “boy.�

What’s really surprising are your inaccuracies. Your tales of disabled kids being taunted by other kids, for example, do not ring true. Most able-bodied kids whom I knew growing up couldn’t wait to push my chair. They would even compete to be “chief wheeler.�

You further allege that wheelchairs don’t fit under restaurant tables, when for years they have come with “desk armrests.� And what’s this about their not going through metal detectors at airports? Big deal--they’re metal! They go around them and are searched separately.

At times, you seem to understand. You talk about our right to live with dignity. What that means is access to schools and jobs, equipment like computers and vans, attendants and respect. The MDA can’t be responsible for all this. But misleading people--potential employers, potential spouses, and even newly disabled people who don’t know any better--only works against these goals.

When I was about 6 years old, I was in a full-page magazine ad for the MDA: big blue eyes peeking through blond curls. The caption read, “If I grow up, I want to be a fireman.� I didn’t want to be a fireman, and knew then my diagnosis called for a normal life expectancy. Confused, I decided that I wasn’t really one of “them� and denied a part of my identity, my connection to the only community where I could learn to feel good about my disability. I didn’t know the word “exploitation� yet.

I realize pity works--last year’s telethon raised more money than ever before. And I know some folks think you’re a saint. But I also know there were protests at last year’s telethon--and will be more--asking why it has taken so long to find a cure and demanding a financial accounting.

Perhaps people would not be so upset if the association spoke less about finding a cure and did more to improve our lives as they are. I know MDA does buy wheelchairs and such. But what does it do to make our world more accessible and to promote employment? How many people with disabilities are employed by the organization and its corporate sponsors?

Don’t get me wrong. Muscular dystrophy can be a killer, and we mourn our brothers and sisters who have died. Yet, despite the impression that one may get watching the telethon, we are not all terminal. And even if you whip MD, you will not end disability. It is here to stay; so are we.

Why not, this year, present active, well-adjusted disabled people--not superheroes but normal people--who nonetheless have used or could use financial assistance to achieve their goals of independent living?

The harm being done is considerable. A dynamic, young, educated, professional woman I know, who grew up with a disability similar to mine, says she cannot watch your telethon because it makes her want to kill herself. “Is that what people think of us?� she asks.

Your pity campaign is so dispiriting, so destructive, that no matter how many millions you raise, the ends do not justify the means. Why not wield your sizable influence to fight our real enemies? What truly handicaps us most are the obstacles--architectural, financial and attitudinal--erected by others.