Friday, January 05, 2007

Little and Cute

I spent the first twelve years of my life firmly attached to my dad's hip. He carried me a lot--to keep up with neighborhood kids, wander around the mall, or explore the woods around my summer camp. I couldn't walk or push a chair well enough to do those things, so he did them for me--for as long as he could.

In light of all that, I can understand Ashley's parents' decision to keep her small and portable. I honestly believe that their intentions are good, despite their nauseating babble. I understand that doctors are constitutionally inclined to see disabled people as "fixable." I don't condone what these people did, but I think I see the thought processes behind it.

There's one part of this growth attenuation procedure that confuses and angers me: "The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors." from the parents' blog

I'm afraid I'm not convinced that Ashley's mother thought having breasts would make Ashley uncomfortable. I assume that the woman has breasts herself, and hasn't opted to have them removed for her own comfort. So why were they removed, really?

  • To make dressing her easier?
  • To accommodate the velcro positioning straps on her stroller-style wheelchair?
  • To disappoint any passing sexual predators who might cop a feel?

Or is it designed to perfect the illusion that she is perpetually nine years old?

People love disabled kids. They donate millions of dollars to telethons, organize spaghetti dinners to buy cute pink wheelchairs, etc. etc. etc. It feels great to lavish gifts and media attention on the wounded cherubs sent to earth by God to make everyone else thankful for their able bodies.

That whole squishy pattern is screwed when adults with disabilities show up. We're not cute, we're heavy to pick up, and we look funny--our obviously mature bodies get carried around, dressed, fed, and positioned in ways that, in a perfect world, only infants would need. It seems to me that once the door was open to keeping Ashley little, it made sense to somebody to keep her cute, too.

The sad truth is, staying cute will make people more likely to engage themselves with Ashley. Minimizing the gap between her outward appearance and her intellect mitigates the deep discomfort people feel around people with mental impairments.

This little girl's life has been altered in ways that might just benefit her. But at what cost? How will a society that condones such procedures ever come to terms with the needs of disabled people who aren't little and cute?

Thursday, January 04, 2007

2007 on Wheelz

In honor of the new year, I am newly committed to Wheelz Life Notes. I liked the format and focus of the blog before, so mostly I just want to say Tally-Ho and Back At It. That being said, I have never left well enough alone in my life, so you can expect some "improvements" at some point.

I don't do resolutions anymore, but here are some goals:

a weekly essay.
a weekly news roundup.
a monthly interview.

What do you think? Suggestions go with new years like peanut butter with chocolate, so go for it.