Tuesday, March 27, 2007

Group Home Hero: The Enduring Bond Between Huey Lewis and the Mentally Retarded

I am conflicted about the article Katy St. Clair that was reprinted in the April 2007 edition of The Utne Reader.

I take that back.

I'm not conflicted. I have trouble with the R-word, although she claims she is taking back the word "retarded." If I can break that internal block, I love this article. It talks about how all of the people she works with love Huey and tells her adventures at a Huey Lewis concert with a woman with Down Syndrome.

(Note: my experiences have not been musical, but with movies. I swear, almost single adult I work with loves Steven Martin and Tim Allen movies. There are only so many times one can watch the Santa Clause in July and still stay sane.)

At first, the articles got my hackles up. I am suspicious. It's still really cool to make fun of people with disabilities. I was afraid that the mocking undertones might be aimed at "the rest of the world" -- people who would get a good chuckle at the mentally retarded dancing to Huey. (I still hesitate to type the R word. What, do I think it will destroy a whole population of people I love with its awesome power?)

But by the end, I loved the author. There is something very touching about the end of the piece when she is helping her friend stand on a chair and Huey Lewis acknowledges them. There is a very poignant moment when the author realizes that's what it's about -- to be seen. to be acknowledged. To NOT be invisible or politely looked away from. to have a rock star mug it up for you on stage.

I have my bands that I've stood on chairs and waved frantically to get noticed by. (I'm waiting for Queensryche's Mindcrime at the Moore DVD release to see if I can pick myself out of the crowd. It won't be hard -- I'm waving a homemade flag of the band's logo and standing behind a woman dressed as a nun.) What seems to start as a joke ("see how silly these people are?") ends in a moment of really amazing shared humanity. I realize that even in the beginning, when the author seems to be a bit snide, she's speaking from love of her friends and not derision.

I've tried to find a full text of this article that I can link to, but no luck. I've seen it mentioned on countless myspace pages, and I haven't stopped to really look at what context it's mentioned in. I hope it's in a good light. The down side to not being invisible is that smart-asses on the web can decide that your whole existence is funny to them.

Edit: an earlier form of the article appears here: http://www.sfweekly.com/2005-08-03/news/a-very-special-concert/

So, here I am

I don't claim to be an expert in politics.

I don't claim to be an expert in all aspects of disability. I don't even know for sure which of these blogging templates will be most web accessible for people using screen readers, magnification, or other adaptions. Suggestions are welcome.

I work with people with so-called cognitive disabilities. I've have watched, over and over, how each person's learning process differs from what I'm supposed to think is "the norm." For lack of funding, effort, understanding, time, or whatever reason, I see so many gifted people with disabilities sitting at home without community contacts or meaningful employment. (My idea of meaningful employment is something that is fulfilling to the individual -- not what society thinks of as a "real job"). I see people slip through the cracks all the time because of inefficient supports.

I am also a person with a disability. I am 31 and have had rheumatoid arthritis since I was 16. Recently, this has been complicated by a diagnosis of narcolepsy.

I have a blog elsewhere on the web where I vent, scream, rage, etc., but that is fairly anonymous and more personal, and really boring. I intend this to be a spot for more detailed discussion about ability/disability politics and why I so often find myself banging my head against a wall.

Also, right now I am working on reading and writing with an 18 year old who is mostly non-verbal. I've wanted to do this for a long time, and with her mom's permission, I'll try to blog how things are going, what programs we're using, etc.

So, hello world, here I am, trying to make my own small dent in this ridiculous world.