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August 28, 2005

Jerry's Kids

Susan writes, in a comment to my Telethon Time Coming blog entry, that

When I was 17 I had a job writing thank-you notes for the MDA. The idea behind this was that people are more likely to open a letter that is handwritten. So we would send people thank you notes (with about 1000 signatures from the same woman!) and use all these tiny stamps for the return envelopes, because they thought that people would think we were so pathetic that we couldn't afford one big stamp! It was a horrible job ...

How many tales people like Susan can tell! That oughta be a book -- if we could collect enough of them, I betcha The Advocado Press would publish it. In the March 1989 Disability Rag, longtime Rag contributing writer Lisa Blumberg wrote a wonderful story about her experiences as an exhibit on an Easter Seal telethon.
Speaking of first-person accounts, I want to welcome Susan's blog, The Angry Gimp. In her first few posts she really "tells it like it is" -- too-high threshholds, too-high credit card readers at checkout lanes...
She writes, in her launching post,
I don't intend to share this blog with the people in my life who aren't disabled - which is most of them. I feel they know enough and help enough and I don't want to burden them with my daily anger. I'd rather make some connections with people, vent, and maybe get a hallelujah choir going. As in "Amen, that pisses me off too!" Hallelujah!"

I love it! A "Hallelujah" chorus! The movement today seems to be sorely lacking just that thing.
Susan writes that she has "a very rare form of muscular dystrophy -- and when I say rare I mean doctors have offered to name it after me!" So she's one of the folks who get to watch her woes paraded across the screen next weekend. Must be Great Fun.
The term "Jerry's Kids" has become such a definer of The Pitiable that nondisabled people use it as a kind of shorthand -- I was reminded of that by the 8/13 post in Katja Stokley's Broken Clay blog: "It could be worse, you could be one of Jerry's kids" makes her list of "Phrases I don't ever need to hear/read again." She has MS, not MD. Most folks don't see any distinction. "Whatever," they think. A disease. Sad.
But not to end on a sad note: when you have a minute, wander over to the Advocado Press's Ragged Edge Anthology page, where, just till after the 'Thon, we've made Anne Finger's classic "And the Greatest of These Is Charity" available online. Read it now -- it will disappear in a few weeks and then you'll have to buy the book.

COMMENT-BODY:Thank you for the glowing review!

The funny thing about that job I wrote about was that nobody there ever knew I had MD. It was a job anyone could get. I didn't feel like sharing my affiliation.

It was a temporary job, and at one point they were really slavedriving us, telling us that we weren't working fast enough. So we worked faster - and were fired earlier when we finished ahead of time. :-(

Posted by mjohnson at August 28, 2005 04:12 PM