Post-cute | Front Porch | Indy Week
Pin It


"Piss On Pity." So sang Johnny Creshendo, disabled English troubadour, in his 1992 American tour of the same name. He came to sing the disability community's dreams of freedom and justice.

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 or www.cripcom

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 ( and

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.

Latest in Front Porch

More by Joy Weeber


Subscribe to this thread:

Add a comment

INDY Week publishes all kinds of comments, but we don't publish everything.

  • Comments that are not contributing to the conversation will be removed.
  • Comments that include ad hominem attacks will also be removed.
  • Please do not copy and paste the full text of a press release.

Permitted HTML:
  • To create paragraphs in your comment, type <p> at the start of a paragraph and </p> at the end of each paragraph.
  • To create bold text, type <b>bolded text</b> (please note the closing tag, </b>).
  • To create italicized text, type <i>italicized text</i> (please note the closing tag, </i>).
  • Proper web addresses will automatically become links.

Latest in Front Porch

  • One vote

    • Nov 12, 2014
  • Box of one

    Was I paying to be helped or to feel important, a bona fide expert on only myself?
    • Sep 24, 2014
  • The Old South (Hills)

    The Old South (Hills)

    • Sep 17, 2014
  • More »

Twitter Activity


'Anna Lee' is a truly beautiful song, Ms Dossett. And I love Levon Helm's rendition. You are blessed with a …

by Byron Miller on A song for Levon (Front Porch)

Just now seeing this....Liz and I were super close friends in the early 80s. She was so special. I had …

by RoBert 1 on In memoriam: Liz Holm, 1959–2013 (Front Porch)

Most Read

© 2016 Indy Week • 201 W. Main St., Suite 101, Durham, NC 27701 • phone 919-286-1972 • fax 919-286-4274
RSS Feeds | Powered by Foundation