Kat passed along this story from CNN that brings up all kinds of disturbing questions about bodily autonomy and disability and medical interventions:
LONDON, England — A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.
Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.
But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a “disturbing precedent.”
Andy Rickell, executive director of disability charity Scope, told the Press Association: “It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie’s best interests.
Painful, invasive surgery on a disabled teenage girl to spare her from the “pain and discomfort of menstruation.” That, to me, sets a terrible precedent. There’s not much in the article that indicates that her periods are unusually heavy or painful, or that she’s got fibroids, or that she’s unable to take any sort of hormonal birth control. In any event, there are nonsurgical alternatives, or even less-invasive surgical interventions, like uterine cauterization.
I’m not really sure, in fact, what’s going on here. The mother swears it’s not about her:
Katie’s mother Alison Thorpe, who lives in Billericay, southern England, said the operation was in her daughter’s best interests.
“First of all, this is not about me. If it was about me, I would have given up caring for Katie a long, long while ago,” she told GMTV.
“It is about quality of life and for Katie to not have the associated problems of menstruation adds to her quality of life. It means she can continue with the quality of life we can give her now.
“Katie wouldn’t understand menstruation at all. She has no comprehension about what will be happening to her body. All she would feel is the discomfort, the stomach cramps and the headaches, the mood swings, the tears, and wonder what is going on.”
Thorpe said an operation would be best for Katie, despite the initial pain it would cause.
She added: “The short-term pain and discomfort we can manage with painkillers. We will be able to manage that pain much better than menstruation once a month, when Katie cannot tell us ‘I’m in pain.'”
So the solution is to put her through severe pain now to spare her cramping later? Can’t you give her painkillers once a month later, or Depo shots, or what have you? Something just seems sort of off to me with this whole thing.
I don’t want to minimize the burden that Allison Thorpe will have in caring for Katie over a lifetime, nor her awareness of Katie’s limited ability to comprehend and communicate that she’s in pain. However, given a range of alternatives, I can’t help but think that there’s a pretty big factor of not wanting to deal with the mess every month here.
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).
Thoughts?