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Disturbing Precedents October 10, 2007

Posted by Winter in body politics, disability rights, reproductive rights.
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You may remember the case of Ashley at the beginning of the year, the young American girl given radical treatment and surgery to stunt her growth and prevent sexual development. This case generated an enormous amount of debate.

Now Feministe alert us to a similar case here in the UK.

From the BBC:

The mother of a severely disabled teenager has asked doctors to give her daughter a hysterectomy to stop her from starting menstruation.

Alison Thorpe, 45, from Essex, says 15-year-old Katie, who has cerebral palsy, would be confused by periods and they would cause her indignity.

Doctors are now seeking legal approval before carrying out the surgery.

The disabled charity Scope said the operation would set a “disturbing” precedent for other disabled girls.

If approved, it will be the first time in the UK a hysterectomy is carried out without it being medically needed.

Zuzu at Feministe comments:

The question, of course, is whether this decision will be for Katie’s benefit. And I just can’t say for sure, with such limited information. But I can say for sure that this case raises a lot of red flags for me. There’s also the issue of bodily autonomy, which is a particularly fraught subject in the disability-rights context, one that was argued with a great deal of intensity in the case of Ashley, a Seattle girl referred to as a “pillow angel,” whose growth was stunted surgically (which included the removal of her uterus and breast tissue so that they would not interfere with the hormone therapy or cause her discomfort) so that she could remain a size that would allow her parents to care for her at home and be able to transport her easily so she could be included in family activities. (For some perspectives on the ethics of this choice, see Blue and Planet of the Blind and Lindsay Beyerstein).

As with the Ashley treatment I’m sure this case will result in a chorus of “You can’t criticise the parent’s!” which is odd, because people seem very happy to criticise parents on almost every score, but when they want to give unnecessary surgery to a disabled child who can’t consent, then it seems to become improper to criticise their actions.

Katie’s mother makes it clear that she’s not advocating the treatment, it’s entirely a personal decision, but the problem is that if it goes ahead it does set a disturbing precedent. How will it be possible to say “no” to the parents of other disabled young women? Where do you draw the line?

There have always been disabled women like Katie, and presumably the majority of them have menstruated and reached sexual maturity. Are we seriously suggesting that their lives are rendered unbearable by this experience? On what real evidence of misery is this very serious decision being considered? There’s also the concept of menstruation as something nasty, traumatic, painful and undignified which underlies the case and which I think is very problematic. Not all women experience menstruation as something that seriously damages the quality of their life and why should we assume it would be so terrible for Kate? Also, the point is made in the BBC article that, if it is a problem, there are other ways of preventing menstruation which are not as painful, invasive or traumatic as major surgery, so I do wonder what this is really all about.

Further reading:

A couple more posts from Miss Crip Chick and Brownfemipower.

See also:
UK Disabled People’s Council.
Scope.

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Comments»

1. Amber - October 11, 2007

Hi! Would’ve sent an email but I couldn’t find an address; feel free to delete this comment. Could you please update your link to my blog to point to beingamberrhea.com? Thanks!

2. Debs - October 12, 2007

I was going to blog about this story, but was so furious about it I was barely articulate (I think ‘spitting mad’ would be a good phrase).

There are so many things about the story to take exception to, not least the assertion that this would be the first time a hysterectomy had been performed when it wasn’t medically necessary! My jaw actually dropped when I read that. Unnecessary hysterectomies are performed all the time where other treatments would be far more appropriate. It’s not so long ago they used to perform hysterectomies to ‘cure’ mental illness!

And the poor girl can’t consent to the operation. I really think it’s more a case of the parents trying to make life easier for themselves, and disregarding what would be best for their daughter. There does seem to be an unhealthy desire to keep her their ‘little girl’.

I can’t tell you how much I hope they don’t do the hysterectomy. A disturbing precedent indeed – more than disturbing, downright horrifying. The consequences for other disabled girls if they do do this (unnecessary) operation don’t really bear thinking about. I dare hardly say it, but there is perhaps a possiblity of a ‘make sure she doesn’t have any kids in case they turn out like her’ attitude.

3. Winter - October 12, 2007

It’s horrifying that there seems increasing acceptance of the idea that disabled people should be maimed, rather than that their carers should be given adaquate support to care for them.

4. Winter - October 12, 2007

amber, done. I think I need to go through the blogroll.

5. Debs - October 13, 2007

I’ve just read this article about this case:

http://society.guardian.co.uk/socialcare/story/0,,2190233,00.html

The parents want the operation because of the pain and inconvenience the onset of menstruation would cause their daughter. But they have to attend to her many times a night anyway, and change her nappy and the sheets. What difference does it really make if she has her period, in these circumstances?

The pain and inconvenience of periods is nothing to the pain and recovery from a hysterectomy, which is major abdominal surgery that it takes 3 months to recover from. Not many women have to take morphine for their period pains, which Katie will have to have high doses of after her operation.


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