But, alas, here we are, nine years later, once again subjected to the annual pity party, 36 years running, called the Jerry Lewis Muscular Dystrophy Association Telethon. Ringing phones, earnest and well-meaning volunteers, well-dressed and obviously "able-bodied" newscasters droning the mantra of the tragedy of neuromuscular "diseases" and the hope of cure.
But where, I ask you, are the adults who have these neuromuscular "diseases"? I know they're out there, because they're my friends. They sure aren't answering those phones! What's wrong with them? Aren't they grateful for all the "help" they got from Jerry when they were kids?
I'll tell you where they are: laying low, avoiding the victim seekers until this annual pity storm blows over. Or they're organizing Jerry's Orphans--former, now-dissident telethon "poster children"--in protest of Lewis' portrayal of disability as a tragedy and disabled people as pitiful and helpless (see www.StopPity.org or www.cripcom mentary.com).
On the May 20, 2001 edition of CBS Sunday Morning, Lewis responded to the disability-rights community's position, saying, "I'm talking about a child in trouble. If it's pity, we'll get some money. ... You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"
Which is precisely the opposite of what the disability-rights movement has been all about for the past 36 years. It's about getting us out of the back rooms of our homes, out of nursing homes, state institutions and group homes, and into our communities, working, playing, learning and loving.
The above was just one insult in a long list Lewis has hurled at the disability community in recent years. In a 1991 Parade Magazine interview, he referred to wheelchair users as "half people." Several years later, during his telethon, he described children with neuromuscular conditions as "mistakes who came out wrong."
Lewis is the embodiment of our culture's ancient belief that disabled people are medically defective, needing to be fixed or kept out of sight. Despite civil rights laws affirming that disabled people are indeed a discriminated-against community, society still doesn't get that we want equality, not pity; we want civil rights, not charity. We want the attitudinal barriers to our full participation in society torn down.
The Jerry Lewis MDA Telethon doesn't tell us that the MDA no longer supports adults who have dared to live beyond a grateful, cute age. About 15 years ago, a friend stopped receiving support from the MDA for the $1,000-a-month medicine she must take just to stay alive. She's now facing a retirement where it may not be a choice between heat and medicine, but between life and death. Why? Because the MDA has chosen to primarily support cure research, rather than also meaningfully supporting people who are living their lives with neuromuscular conditions.
The telethon doesn't tell us about heartless state and national policies that treat disabled children and adults as second-class citizens. It doesn't tell us about well-heeled lobbyists who write laws that keep us prisoners in their nursing and group homes (www.mouthmag.com and www.freedomclearinghouse.org).
The Jerry Lewis MDA Telethon doesn't show us the disabled adults with neuromuscular conditions who run nonprofit organizations that educate people about disability rights (that would certainly be bad for business). But these individuals, along with the playwrights, columnists, activists, actresses, dancers and poets who live full creative lives with neuromuscular conditions, are the people who will get my pledge of support, because they're the ones who are changing how this society looks at living life with a disability.