Emma does a great job at summing up the horribleness of this. NPR also reported on this yesterday. Emma posts the UK article here. I totally agree with Emma's thoughts on this only to add that this is also a feminist issue. I feel strongly about this being the mother of a nonverbal girl with Cerebral Palsy. I had period pains too when I was young - really really bad ones. And you know what, I got a hot water bottle and Tylenol but was allowed to keep my uterus. I haven't heard of any growth attenuation "interventions" being performed on the boys (which would be equally awful). If this were not a feminist issue I think you would be hearing about that too as men are on average larger than women in terms of weight as an issue for the seemingly allmighty care-giver / management paradigm.
Part of me was also very saddened to see that doctors in the UK sanctioned this. I always think of the UK as being so far ahead in social issues. Maybe it's because they are a much older country than the US. Or maybe it's because when we go there we see people protesting in the streets not to irradiate their food and for more organics. People seem so conscious there. I am now disabused of this abberration. What were those doctors thinking? I hate the precedent this is setting. Is there no safe place for the nonverbal PERSON with Cerebral Palsy?
When did a person who can't speak for themselves suddenly become a nonperson whose organs are up for grabs? Didn't Hitler round up a good many disabled people and let his mad scientists perform experiments and eugenics / sterilization on them? How is this any different? Did no one read Dr. Zeus? " A person is a person, no matter how small" or no matter how different for crying out loud! Why isn't this a given people?!
It's an incredibly awful, misguided, misdirected answer to huge problem of lack of support, medical equipment, etc. for people with gross motor issues and their carers.
It's just so wrong. There has to be a better answer than this. What kind of world is this creating?
Slam me if you will. But have a think about how you would feel if you were trapped in a body and had someone make this decision for you.
10 comments:
Oh my gosh, I am so damn appalled right now. That's an aspect of CP I hadn't even considered. Granted, I have a boy, but I seriously had never even thought of this.
I have a cousin who is autistic, with the mentality of a 4-year-old (she's 25). If she can understand her period, I like to think most people could.
Grrrr - makes me angry. Thanks for posting this and the link to the original blog/article.
We recently had a mini-version of this discussion with a doctor following our 3 1/2 year old daughter's bout with an ovarian tumor, so I blogged about it & linked back to your blog. Hope that's okay.
Thanks again for the post & perspective.
You are so completely right about this also being a feminist issue. You make a very good point about boys. If a boy were (castrated? I guess) to keep him small and not have nocturnal emmissions (all for the sake of the caregiver's convenience) I really wonder what the outcry would be. I don't think men and male doctors would stand for it, even if the male child was nonverbal and cognitively impaired.
The whole thing is just disgusting and I can't believe after Hitler's eugenics and forced sterilizations in the early part of the century that this is coming up again.
Thanks Kathryn for the link. I'm so disgusted. It seems sometimes that the world has gone nuts. And you are right, it is a feminist issue.
This article is disturbing on so many levels.
Since when is menstruation an indignity!???
Agree.
I think that this is corollary to the debate about whether unborn children with disabilities should be allowed to live or be aborted. I imagine that I won't find agreement with this in alot of circles but when the culture devalues human life as it has in the ashley treatment it can be seen as part of the slippery slope. imho
This is so disturbing. I would think that in our advanced society we would be beyond this archaic thinking! Just because a young woman can't speak for herself, her parents have no right to be able to make these kinds of changes!
Maureen
To leave this a first comment is weird, so let me say that I've been reading your blog for a while, and I think Ellie is lovely and amazing.
I'm in Seattle, so I've been following the Ashley treatment stories since it happened. And, it looks like the doctor who spearheaded that treatment here has killed himself. Huh. It must have been very hard on his career when they found that Children's had performed the procedure illegally. I feel sorry for him, even if I don't agree with what he did. A Seattle P-I article is here:
http://seattlepi.nwsource.com/local/
335019_gunther11.html
Thanks for the post.
Kathryn I've tagged you to write about your favourite books...
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