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?


bacpro620 said...

You may feel that way. But my life has been pretty good. I am light so many can still pick me up. Why are you so down on life?

cynthia said...

Hello bacpro,
I'm happy to hear that your life has been pretty good. My life is good now and getting better every day.

What I am down on is the idea of physically altering people with disabilities for the convenience of their caregivers. I am also down on the attitudes and physical barriers that marginalize adults with disabilities who can't or won't be carried by other people.

Which part of my post sounded to you like I am down on life? How do you feel about Ashley's surgery?

Philip. said...

I have only read a small amount about the case here in the UK but it certainly seems to be a complicated one.

I doubt very much if there is a wrong or right answer to it.

All I can say is how much anguish the parents must have gone through.


cynthia said...

Hi Philip,

I agree there is no easy answer. I mean, if I still weighed eighty pounds? Some things in my life would be much easier than they are.

But if some surgeon showed up and offered to make that happen? *shudders* no thanks, I like my body the way it is.

Just my opinion of course. I'm glad to find your comment. Welcome! I'll be stopping by your blog soon.