In which I shoot my mouth off about ethics

[moon_custafer]

I've been thinking about the Ashley X furor all weekend, and I think I finally have a comment worth making, but it's not directly about the case. Just to set up the situation - Ashley is a nine-year old with a really, really severely disabling condition - basically she's got the mind of a three-month old infant, and slightly less mobility than said infant, and that's not going to change ever. Her parents have been caring for her at home since she was born, but at fifty pounds, she's getting to the upper end of what they can lift, and they're not getting any younger; so with the approval of the local medical ethics commitee, they've been using hormone treatments to arrest her growth, so they can keep caring for her at home; thay've also had most of her reproductive organs removed so she doesn't have to go through the pain of menstruation, etc, with no idea why she hurts.

For the record, I think it sounds like the parents and their advising doctors are genuinely trying to make the best of an awful, and very rare and specific, situation. I've been reading a lot of the arguments people have been posting online against the procedure, and my reaction to each one, as I've thought it over, has been - that's a very good point (society should have given the parents other options by improving wheelchair accessibility, etc), but I'm not sure it applies in a case this extreme (Ashley would still have to be lifted in or out of her chair several times a day, and because of her near-total lack of mobility, she'd have to be moved as a dead weight - also, according to the parents, she freaks out if strapped into a wheelchair).

This point I want to bring up, I guess, is that "disabled" is a huge category - a deaf, ASL-literate teenager with a social network of other deaf people, an adult in a wheelchair following a spinal injury, a legally-blind woman who needs a powerful magnifying glass to read, a kid with Down's attending public school, a kid with severe classic Autism, a guy with debilitating depression, a woman with no higher-brain functions, etc, are all human and have rights, but they've got wildly different needs, and I think it's important to take that into account when arguing the right, or at least the less-wrong, thing to do.

Comments

[agincourtgirl.livejournal.com]

My mom is partially disabled as she lost 90% of her hearing while pregnant with me - she was offered an operation years later to fix it, but declined as she was used to it & didn't want to risk messing up her motor facial nerves. I am sorry she had this condition (obviously) but glad she was given the option, and was able to make up her own mind. In the case of Ashley, it is a terrible thing and making things as bearable and good for her and themselves is all they can do. It is a huge category and yes, I agree totally, different situations call for different needs.

[moon-custafer.livejournal.com]

Thanks for telling me that. I suspect I'm pretty much preaching to the converted with most issues*, given the people who read this lj, but this had been rattling around my head for a while and I wanted to get it out in pixels :)

If I may ask, how exactly did pregnancy cause a hearing loss? I know childbearing is potentially risky but I'd never heard of that effect before.

*And my atheist readers and I have a polite understanding :)

[agincourtgirl.livejournal.com]

When my mom questioned her doctor he said "It just sometimes happens." This was 40 years ago, when doctors were kindly and said things like that and young women were accepting. The damage is to the inner ear, same as when people have diving accidents. I don't think it's a very common side effect...

...and you're welcome!

Wheel chairs

[(Anonymous)]

This point I want to bring up, I guess, is that "disabled" is a huge category - a deaf, ASL-literate teenager with a social network of other deaf people, an adult in a wheelchair following a spinal injury, a legally-blind woman who needs a powerful magnifying glass to read, a kid with Down's attending public school, a kid with severe classic Autism, a guy with debilitating depression, a woman with no higher-brain functions, etc, are all human and have rights, but they've got wildly different needs, and I think it's important to take that into account when arguing the right, or at least the less-wrong, thing to do.
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