(Editor’s note: We are participating in the “blog against the telethon,” organized by Miss Crip Chick and Kara Sheridan. For a comprehensive list of links to others blogging against the telethon, please check out Kara Sheridan’s site – she’ll be adding links as the notifications come into her. While you’re at it, you can also check out the Washington Post website and read Ben Mattlin’s No Longer One of ‘Jerry’s Kids.’ The entry below is written by Diane Coleman, founder and president of Not Dead Yet.)
When Mike Ervin co-founded Jerry’s Orphans in 1991, I was living in the country outside Nashville, and organized local disability activists to picket the TV station that carried the Telethon. Protest is viewed as especially impolite in southern communities, but I always felt that preventing the Telethon from harming young people with disabilities should trump other arguments and discomforts. Thank you to the many disability rights leaders who have written so persuasively about the harms caused by the Telethon’s message of pity.
One form of Telethon-related harm that many of us with neuromuscular disabilities have experienced is the incorrect prediction of an early death, along with the failure to mention a wide array of options for breathing support to extend life. My friends who use bipap machines at night due to post polio syndrome taught me about my options. But I’ve lost at least two younger friends to respiratory crises who never pursued breathing support. One said she feared it would be burdensome.
Even with breathing support, some children with neuromuscular disabilities will die young, and that’s tragic. It’s difficult to fault Jerry Lewis for mentioning that during the Telethon, even though I thought he should also say something positive about breathing supports.
But during the 2001 Telethon, Lewis crossed a line in a way that continues to shock and anger me. He told the story of a 15-year-old with muscular dystrophy who was on a vent. Lewis was contacted because the young man said he wanted to go off the vent and die. Lewis reported to the Telethon audience that when he telephoned this young man, he apologized to Lewis for not beating the “disease.” He’d told his parents that he was sorry for having brought them down and being a burden. He took himself off the vent (which could not have been done without the permission of his parents). This, said Lewis, is why we have to beat this disease. Lewis said not a word about assuring him that he was not a burden, or arguing that this was a bad reason to decide to die, or suggesting that he wait-and-see, not even to wait for the cure the Telethon has been promising all these years.
Lewis gave no sign that he fought for the life of this 15-year-old young man during that phone call. By the time of the 2001 Telethon, he had already died. The worst part of Lewis’ account is that he was then speaking to all the other young people watching the Telethon – from nondisabled fundraising scout troops to teens with neuromuscular disabilities on ventilators. And what they heard was that Lewis did not express one word of disagreement that this young man was a burden to his parents, nor did Lewis disagree with his decision to die for their sake. His silence on these issues was a profound abandonment of those who look upon him with trust. It is an unforgivable harm. –Diane Coleman