Geek Love and The Ashley Treatment
Have any of you read Geek Love by Katherine Dunn? If you haven't, don't read further -- I'm about to give some plot details away -- but if you have, you'll recall that a cult develops that requires followers to emulate it's founder, Arturo, who is shaped like a tadpole and has flippers for hands and feet.
Members of the cult have a series of elective surgical procedures in order to fulfill this requirement. First a thumb is removed, then more fingers, then a limb, then another limb, and so forth, until they require full-time care in a home. One of the horrific aspects of the story is how people are recruited, brainwashed, then calmly sign over their savings to the cult and voluntarily have the surgery.
How is this achieved? Via a number of strategies, but the key one, I think, is language.
The cult leader uses rhetoric that is highly sanctified and religious; through skillful use of language he is able to persuade people to join him. The language confers a degree of status to those who progress further along the path to "tadpoledom", creating a hierarchy for each stage of surgery.
This was kicking around in my head last night after I wrote this piece for BlogHer about Ashley. And now I come across a comment (sixth one down) by Sara at Women of Color Blog that resonnates with me:
"Where in the hell do they get off calling this 'medical treatment?' They're not 'treating' anything. This is dismemberment."Here are some other links to feminist and/or disabled bloggers writing about this issue.
- BrownFemiPower, Women of Color Blog: The "Ashley Treatment"
- Blue, The Gimp Parade: "Frozen girl" discussed on TV tonight
- Melinda Casino, BlogHer: The Ashley Treatment -- another Terri Schiavo case about to explode?
- Disgruntled Ladye, Everything and Nothing At All: Ashley X
- Did I Miss Something?: It begins with Ashley.
- Wheelchair Dancer: Human Rights
- Earlebecke, Definition - a Feminist Weblog: The "Ashley Treatment"
- Heart, Women's Space/The Margins: The Ashley Treatment
- Rachel's Tavern: The Ashley Treatment: A Feminist and Disability Rights Issue?
Above all, think for yourself. Otherwise you might as well join the church of Arturism. ;)
4 comments:
Thanks for this.
I have a severely cognitively impaired cousin -- more severe than Ashley in fact. He's now 20 and, no, it's not easy for his parents to care for him (it never has been at any stage), but there's no way anyone would ever have considered invasive surgery to keep his body small and manageable.
Thanks for your comment, Winter, it's good to hear from someone with firsthand experience with caring for the disabled.
I'm a little concerned that criticism of The Ashley Treatment will be perceived as a "piling on" of the parents; this shuts down discussion. So I want to make it clear: this is not about condemning the parents, it's about thinking critically about what looks to be a "test case". It *should* be thought about and discussed rigorously, because it has implications for many more disabled people.
Actually, the parents deserve EVERY bit of criticism thrown their way.
This is clearly unethical, and the "doctor(s)" who performed unnecessary surgery should have his/their licenses revoked.
To hell with the parents' fake concern about their daughter. This is all about what THEY want, all in the name of what is "best" for her.
The disability rights organizations ought to raise holy hell about this.
My first cousin Maggie is severely developmentally disabled as well; not quite as bad as Ashley, because she is not bedridden, but she cannot talk or feed herself and has minimal real cognitive function. Her parents kept her at home as long as they could, but when she was in her teens they moved her to a long-term care facility, where she will undoubtedly spend the rest of her life.
I understand why Ashley's parents made the decision they did. I don't think I would have made the same decisions that they did, but I am not going to pile onto them. And frankly, it seems to me that even being a wheelchair-bound blogger does not confer a right to insist that you know what's best.
This is a situation where all the choices are just degrees of bad.
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