Wheelz on Hiatus

I'm sad to announce that WLN is on hiatus indefinitely. I want to come back to it someday, but only if I have something important to say and the time to say it.

Thank you to everyone who has read, and especially those who commented.

Ow.

From the comments on this CNN story, by way of the fantastic Kay at The Gimp Parade blog:

My son was born 9 weeks early. At 6 months, his pediatirican indicated that he was not progressing as he should. This statement started the long journey to the diagnose of cerebral palsy, the endless hours of therapy and multiple procedures and surgeries. In a couple of weeks, my son will be turning 8 years old. We never made any allowances for his disability. We treated him like any other child. We worked with him constantly to learn the activities that come so easy for other children: feeding themselves, dressing themselves, walking, running, climbing stairs and riding a bike. Today after everything he has been through, you would never know that he was different. Has the hard work ended? Definitely not! It will always be a little harder for him to do certain activities. But he faces each new challenge with gusto and an outrageous sense of humor.
[Emphasis mine, comment edited for length, not editorial slant. please do go read it--the whole thread is well-written and thought-provoking]

Ow. Ow ow ow. From what this mom has written over at CNN, it's clear she is devoted to her son, thoughtful, and intelligent. I am so tempted to point out that her son will not always have an eight-year-old's resilient body and boundless energy. To caution her that many people with CP need more and more mobility aids and/or adaptations as they reach adulthood, and that her understandable pride in his passing as able-bodied(ow) might be better downplayed a little. To pose a question: Why does it feel like such a victory to avoid providing kids with CP "any allowances for [their] disability"?

I have decided to refrain from replying to this mom directly, because my own pain is too tied up with her story for me to be effective. I was an eight-year-old with CP once, full of gusto and tackling so many challenges. Her glowing pride and hopefulness is a perfect reflection of my father's, who once looked down at me as I walked beside him aided only by holding his hand--"You know, I bet people can hardly tell that you're handicapped."

I use a power chair these days. When I was thirteen, I finally told my dad the awful truth I had always known but had been afraid to articulate: I was a fraud--I didn't so much walk as fall forward in slow motion, sometimes interrupted by collapsing gratefully into a chair. I worried about falling down all the time. Besides, *gulp* walking wasn't really important to me anyway --I'd rather be able to go farther, to stop and start and "stand around" like able bodied people do.

I thought he'd be furious, or worse, heartbroken. He said something like, "Oh really? I had no idea." We got hold of a wheelchair pretty soon after that, but I was married, a mother, and divorced before I got my first ramp more than a decade later. I can see in hindsight how many social, educational and other opportunities I missed in my walking days, limited to the tiny territory I could cover on my feet. I don't hold it against my parents, but it does make me sad to realize how much more confident and independent I could have been, with accommodations.

If I had my way, I'd sit down with every parent of a newly-diagnosed kid with CP and draw them a picture--a neighborhood map marked with two circles--distance from home I can walk, and the distance from home I can go in my chair. Maybe it wouldn't mean anything to them, but I deeply, desperately want them to understand that appropriate adaptation is not defeat--it's freedom.

Transported back to Special Ed. by a poem

Poem: "How to Tell If You're a Participant or a Staff (A Handy Guide for Day Programs)" by David Moreau from You Can Still Go to Hell and Other Truths About Being a Helping Professional. © Moon Pie Press. Via Writer's Almanac

How to Tell If You're a Participant or a Staff (A Handy Guide for Day Programs)

If you have a bowel movement at work and no one records it in a
communication book — you're a staff person.

If someone shouts at you from the other side of the room, Did you
wash your hands? every time you come out of the bathroom — you're a participant.

If your feet don't quite touch the ground when you're sitting in one of
the cafeteria chairs — you're a participant.

If you know where the candy is in Jolene's office — you're a staff
person.

If you can run out to Subway or Burger King for your lunch — you're a staff person.

If you're in a wheelchair — you're a participant.

If you get a buzz cut every staff day — you're a participant.

If you've never ridden in the back seat of the van — you're a staff
person.

If you can walk in the office without being asked, Where are you
supposed to be? — you're a staff person.

If the soap dispenser is on the side of the sink opposite your one good
hand and you can't reach high enough to keep the automatic faucet
from getting your sleeve wet — you're a participant.

If you can give a hug without someone telling you, Remember circles —
you're a staff person.

If you go out for cigarette breaks — you're a staff person.

If your paycheck is for $1.82 — you're a participant.

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?

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.