Apr. 14th, 2009

capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
The world at large keeps giving me (un)shiny new things to rant about, lately.

Here's another entry I just posted to [livejournal.com profile] gimp_vent. It may show up tommorrow, or the day after:

...

Did anyone else see this report (April 13, 2009), about a new effective surgery for SOME kinds of CP (on American television, broadcast network: NBC)? ...I could not find a simple, dial-up friendly, link to this report online. Maybe someone whose Google powers are greater than mine is, today, could help out.

In this news story, they explained that this is a new surgical technique for some forms of CP, wherein a vertibra is removed from the spine, and the rootlets of certain nerves are cut in order to reduce the severe muscle spasticity that is strong enough to intervere with bone growth in toddlers. And it was reported that for the cases where this surgery is used, there is improvement in 100% of patients.

I have mixed feelings about this.

On the one hand, I'm glad there's a new treatment available that can, apparently, prevent future problems with one surgery, instead of subjecting the child to multiple fix-it surgeries throughout her childhood.

I'm also glad that writer of the news copy called cerebral palsy a "condition," rather than a "disease," and that the point was made that there are many kinds of CP, and this treatment will not work for everybody.

BUT:

It really bothered me that they interviewed the tearful mother who started to sob and get choked up, when she talked about how she watched "normal" children run and play, and how sad she was when she knew that her "precious little girl" couldn't keep up. And, now that she's been treated with this surgery, she'll be able to have friends and play with other children.

I'm sorry. But this just hits me as a heaping serving of wrong with fail sauce.

I grew up with a more severe version of CP than the little girl highlighted in this news story, and I had plenty of friends in school and in my neighborhood.

The kids who really, truly, cared about me, and wanted to be my friend because of who I was as a person, adapted their games so I could join in, and they never made a big deal about it. They wanted to play with me, so we played games I could play. I had a blast growing up, even though I couldn't walk at all.

The difference, was, I think, that my mother invited the other kids in my neighborhood over to our house, and gave us room to play together. And when she took me to the local playground, she helped me get into the center of the action, where I could get on the see-saw, and the swings, and the merry-go-round (round-about, for the Brits).

She did not, as the mother in this story seemed to do, sit with me on her lap on the park bench, getting all teary because I couldn't run after the the other kids when they're racing about playing tag, or whatever.

And I just wonder about how that attitude is effecting her precious daughter's self-esteem.

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capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
Ann

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