Quoting “Too Late to Die Young: Nearly True Tales from a Life” by Harriet McBryde Johnson

Harriet McBryde Johnson (1957 – 2008) was an American author, attorney, and disability rights activist with muscular dystrophy and a wicked sense of humor.

hjohnson

Harriet McBryde Johnson sits in her power wheelchair with one hand under her chin. She is behind a desk with neatly organized papers and books. There is a computer next to her side.

I’ve had a lifetime against saying “They mean well” of telethons and the people who love them. In my childhood, telethons were ubiquitous. Easter Seals sponsored the separate-and-unequal crip school I attended. United Cerebral Palsy bought equipment for some of my friends. March of Dimes declared it would “Stamp Out Birth Defects!”—a slogan that made us defectives nervous. They all wallowed in pity, depicted disability—“crippling” they called it—as the worst fate imaginable. They all assumed the only answers were prevention and cure. In most ways, one thon was like the next. But in one way, MDA stood out from the pack. Its pitch had added a punch of urgency; find a cure before they die!


Are you a Jerry’s kid or Jerry’s orphan?

jerrys kid

People with disabilities protesting against the MDA telethon.  An older woman who is in a power wheelchair holds up a yellow sign, saying “I’M A FORMER ‘JERRY’S KID’ STOP THE PITY PARTY.”

Here’s a video to elaborate on the Jerry’s kid/orphan analogy: https://www.youtube.com/watch?v=5tM4tTUMwGE  Jerry refers Jerry Lewis, the MDA telethon’s former longtime spokesperson.


I wonder if the post-ADA generation of people with disabilities, including myself, are becoming too complacent.  For instance, as someone with a “preexisting condition,” I am very concerned about the pending changes to healthcare.  Yet, I am not protesting or calling my legislatures.  I know how bad this sounds, especially for someone who has interned at political offices.

I respect those who are on the front lines protesting and calling.  But perhaps I am too jaded to think that we can change our pending doom or even that our governmental system actually works.  Any thoughts?

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