5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require public funding for adequate and affordable in-home supports.
It’s feels like it’s 2007 all over again, what with “growth-attenuation therapy” for severely disabled children – many of whom are girls – being back in the news. And today, just like then, people with disabilities are trying to make this all about them. But there’s no unrecognized ableism framing this “ethical debate.” It’s not as though fearful parents who really do care about their children — who really are severely disabled — are being given an absurd and brutal choice:
Nothing to see here, nothing to learn here!There’s no point in remembering all the way back to the 1970s when parents and doctors actually thought they were helping those tragically tall teenage girls by dosing them with lots and lots of estrogen to keep them of a most pleasingly small size.
Have “useless” organs and body parts removed from their child’s body through surgery, and then dose them with hormones to keep them small
OR
They’re on their own to figure it all out, using dwindling in-home services because, hey, they wanted to have that disabled kid, you play, you pay, right?
It feels really good to have this bioethical conversation. Again. It feels so good I want to provide proponents of this magnificent medical advancement for Children Like That with a handy list of reasons why it’s all good and there’s nothing behind that #ableistviolence business.
(And in case anyone is concerned about the investigation into the Washington State hospital that performed the sterilization, breast bud removal, etc., on a minor named Ashley X, and that was found to have violated her constitutional and common law rights: That was Ashley and the Ashley Treatment. At this time, we are not talking about children with disabilities named Ashley. Don’t be fooled by “disability rights” “advocates” who will try to twist a tragic medical necessity into a “eugenic” pretzel!)
The Top 10 Reasons Why Medically Stunting the Growth of Children With Severe Disabilities Continues To Be an Ethical and Well-Thought-Out Solution To the Problem of Financially Stunting Public Funding for In-Home Social Services, Which Is…Huh, How ‘Bout That.
10. Because it’s so much safer to be a physically immature person than a physically mature person when it comes to abuse and other forms of violence.
9. Because breasts provoke sexual predators.
8. Because we all know – even though it’s not “PC” – that “bodily integrity” doesn’t come with the standard package when you’re going with the disabled model.
7. Because what’s the big deal if you’re not even going to use your uterus?
6. Because why would an adult caregiver consent to an experimental treatment to, say, increase their physical strength, instead?
5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require adequate and affordable in-home supports.
4. Because even if people with disabilities have a long history of eugenics and unethical “research” being performed upon them by experts who are more Mengele than Hippocrates, how aware is a kid like that going to “suffer,” anyway?
3. Because adequate and affordable in-home services that support profoundly unsupported parents/caregivers and that don’t violate the human rights of people with disabilities are so…boring compared to 21st Century Inventions that blend inspiration porn and Tough Talk About Tough Choices, with just a splash of heartwarming faith in better living through science.
2. Because periods.
1. Because people with disabilities are tremendously helpful at pointing the way to an exciting future of addressing complicated social and economic inequality via medical experimentation on the bodies of people who lack political power. Imagine solving child hunger by providing “Preemptive Juvenile Poverty-Related Gastric Reduction”!
Tales From the Crip 
Ingrid as usual, thanks for bringing attention to an often not discussed issue. This was one thing in my volunteer circles that I tip toed around because I didn’t have words to articulate the other side of the coin so to speak on such a sensitive issue. In my communities it came up because of a genetic disorder that sometimes has a high rate of autism, behavioral issues, but also severe & intractable seizures in both children & adults. I never was quite sure how to amplify those voices to advocate for them even though I wanted to because I did understand the caregiver voice in some instances even when I didn’t fully agree, especially on topics like this. I wish I had found you somehow several years ago & perhaps I could have found words to at least bring more light to this issue then by picking someone else’s brain about it back then. Thank you for such an eloquent post.
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Thank you — your comment means a lot to me. (I’m a bit tired right now so sorry for the brief post.)
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Thanks Ingrid, for this post. I quoted it with attribution to you for a Parents.com blog. Link here: http://www.parents.com/health/special-needs-now/no-parents-of-kids-with-severe-disabilities-should-not-be-able-to-stop/
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I saw! And I was wicked stoked that words like “scathing” were used about my writing. You do nice work.
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Thank you! You do good work too, Ingrid. And your post was “scathing” indeed. And brilliant. And necessary.
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For anybody reading this who wants a more “serious” response, here’s what I sent to the NYT Magazine editor, the author, and the NYT Public Editor (contact info below for all who want to weigh in, as well):
@GenField8 @NYTmag @DREDF There was bias in the bones of the article as published. It’s premise was mistaken and there was a heavy slant toward the personal, unquestioned stories of parents who wholly or partially support medically stunting their disabled children.
The premise was that the debate is about a medical treatment. It is not. The ethical debate is about whether some human bodies have inherent integrity while others do not, and whether ability should determine social worth. You presented an economic and political matter as a fundamentally medical matter. That guarantees that the core problem — severely disabled people are at risk for abuse and a generally poor quality of life — won’t be solved.
The article doesn’t substantively discuss a central factor: That it is has long been possible for severely disabled people to live successfully and safely in the community without resorting to experimental and medically unnecessary procedures. That the parents you focused on have little knowledge of, access to, or trust in those options is precisely what should have been focused on.
UPDATE: As I mentioned elsewhere, I tweeted to the NYT Public Editor @Sulliview because my criticism goes beyond typical complaints w/ coverage. I think the paper failed in its journalistic duty to question its own biases as the story was written, edited, and published. “The public editor’s office also handles questions and comments from readers and investigates matters of journalistic integrity.” Contact info at:
http://publiceditor.blogs.nytimes.com/contact-the-public-…/…
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