Have any of you heard this? Two parents elected to have their daughter's breast and ovarian tissue removed so she won't reach puberty or full size. They claim it will make care for her easier, since she is easier to include in activities and "touch and cuddle" when she is small. Thoughts?
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Parents Stunt Disabled Daughter's Growth
- Thread starter FourBear
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Hah, it is just too bad that I've discussed this elsewhere so I don't feel like repeating myself...but I'll sum up the result (as well as post the link):
http://www.timesonline.co.uk/article/0,,3-2530561,00.html
The link provided is not a very good one...it has too many loopholes and fails to allow the reader to actually form any kind of informed judgment. To me, the issues are centered on what kind of potential this child has (what is the cause of this static encepalopathy?), as well as her cognitive awareness and sense of personhood.
Otherwise, that parents would wish to impair somebody further in order to make "care" easier for themselves kind of detracts from the argument that the parents are entitled to care for their daughter as it implies what kind of attachment they have to her.
http://www.timesonline.co.uk/article/0,,3-2530561,00.html
The link provided is not a very good one...it has too many loopholes and fails to allow the reader to actually form any kind of informed judgment. To me, the issues are centered on what kind of potential this child has (what is the cause of this static encepalopathy?), as well as her cognitive awareness and sense of personhood.
Otherwise, that parents would wish to impair somebody further in order to make "care" easier for themselves kind of detracts from the argument that the parents are entitled to care for their daughter as it implies what kind of attachment they have to her.
O.k this is definently a new one for me. I never even realized you could opt to do something like this. I added the parents weblog to my favorites. I would like to get a little more perspective on the parents point of view before I comment on how I feel on this whole matter.
mtatum4496
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I tend to agree, Fourbear. Personally, I cannot think of any set of circumstances where I would go this route with my own child.
At the same time, I find myself hoping there is more to this situation than meets the eye and that convenience is a secondary result of this situation and not the primary motivation. I'll see what else I can dig up before I allow myself to get too emotionally involved in this.
At the same time, I find myself hoping there is more to this situation than meets the eye and that convenience is a secondary result of this situation and not the primary motivation. I'll see what else I can dig up before I allow myself to get too emotionally involved in this.
mamab
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Wow, that's kind of drastic, don't you think? I can understand how they might want to make things easier for her, but I personally think it's too drastic. Why didn't they just cut her brain open and take out her pituitary gland? That's what determines growth more so that breast and ovarian tissue.
harleysneak
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I would have to say I'm in agreement with the majority here. When I first saw this I couldn't believe it was something people were actually doing. I, myself, feel very sorry for the girl. But I guess you can never judge anyone unless you are in their exact same situation.
Interesting article. I think I've got to side with the parents.
I saw a TV show documenting the growth of a particular retarded kid. He was loved by all while he was still cute and cuddly, making his trips to the doctors office a reasonable experience with tons of people willing to help. After he grew up physically no one but the parents were willing anymore to lend a hand, which the parents needed to reasonably care for him. In that case, his quality of life definitely deteriorated despite his parents continued support. Most of it I think was that his "cuteness" as a child allowed caregivers to respond his behavioral/physical problems with some sympathy instead of "ugh, get me out of here". Given that I could see staying a child as a huge boon to a retarded person's quality of life.
Putting aside the whole eugenics argument for a second (though wow why haven't we had a thread on that?) If sex with a particular person is 100% always considered statutory rape because of their mental condition, its hard to make the argument that they have any conceivable need or benefit to developing fully.
I see value to the "hmm, the treatment is so permanent. what if you do it, and 10 years later they cure her" argument. I went to google what she had though and this is the definition I found: Static Encephalopathy as defined by Easter Seals: "Permanent or unchanging brain damage." That suggests to me the odds of a "spontaneous recovery" were pretty darn low.
I saw a TV show documenting the growth of a particular retarded kid. He was loved by all while he was still cute and cuddly, making his trips to the doctors office a reasonable experience with tons of people willing to help. After he grew up physically no one but the parents were willing anymore to lend a hand, which the parents needed to reasonably care for him. In that case, his quality of life definitely deteriorated despite his parents continued support. Most of it I think was that his "cuteness" as a child allowed caregivers to respond his behavioral/physical problems with some sympathy instead of "ugh, get me out of here". Given that I could see staying a child as a huge boon to a retarded person's quality of life.
Putting aside the whole eugenics argument for a second (though wow why haven't we had a thread on that?) If sex with a particular person is 100% always considered statutory rape because of their mental condition, its hard to make the argument that they have any conceivable need or benefit to developing fully.
I see value to the "hmm, the treatment is so permanent. what if you do it, and 10 years later they cure her" argument. I went to google what she had though and this is the definition I found: Static Encephalopathy as defined by Easter Seals: "Permanent or unchanging brain damage." That suggests to me the odds of a "spontaneous recovery" were pretty darn low.
That's the first thing I thought of when I read the article. It's hard to deal with adults with severe mental retardation because we respond to the fact that they look like adults and we have to remember to adjust our expectations accordingly. With this child, expectations of her are going to be in line with her capabilities, throughout her life. Plus, physically it will be easier to care for her, which will likely result in better care. I think it's easy to be morally outraged when you have no experience of anything similar so I try to exercise some empathy when the situation is outside of my experience. Since the procedures passed through the hospital's Ethics Committee, I don't see a lot of grounds for moral objection.
mtatum4496
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You know, I really had not given this part of the picture the attention it deserves. Is it really more humane to allow a person in this condition to develop, with the attendant physical and at least to some degree emotional changes (in whatever form the hormonal changes would impact the emotional in this case)? The more I attempt look at this from a vantage point outside my own experience, the more I am able to understand the reasoning.
Hey Framed, something about the broader significance of this example just crossed my mind: The parents' decision in this specific context may be justifiable in light of the current prevalence of stigma, but I do not think it ought to serve as a precedent for future cases presuming the perpetuation of the stigma associated with cognitively impaired persons. The positive step would be to address that instead of letting cultural bias implement what is effectively a form of eugenics.
I don't think its a stigma issue, unless I'm misunderstanding you. Its fact that mentally disabled people sometimes require inordinately amounts of care, and sometimes do things that are fantastically frustrating. At least if the person is a small child the care is physically easier to provide, and since humans have a much higher threshold for taking crap from small cute faces they're likely to get better care for a longer period of time.
I have a few different opinions about your eugenics comment.
First I would think that if the person is so mentally disabled that no one can legally have sex with them, the law already provides the eugenic effect. The procedure just has a side effect of preventing a pregnancy if someone breaks the law. If the law defines people who cannot give consent, its already doing the eugenics job, the procedure is redundant from that standpoint.
Second, I think eugenics got a bum rap because of how people extrapolated it. At a basic level its not racist to say "definitively bad genes should be discouraged, and definitively good genes should be encouraged" The trouble is in defining definitively good and bad. Eugenics followers got themselves in trouble by (poorly and unscientifically) defining good and bad genes to include things like "minorities & immigrants = bad, white & rich = good".
Strip the racist crap off, and you're left with something that fundamentally makes sense. Some people have genetic problems so severe that they should not reproduce. They couldn't take care of their kids even if they had healthy ones, and their kids have a higher likelihood to have the same defects, creating a generational burden on society.
I have a few different opinions about your eugenics comment.
First I would think that if the person is so mentally disabled that no one can legally have sex with them, the law already provides the eugenic effect. The procedure just has a side effect of preventing a pregnancy if someone breaks the law. If the law defines people who cannot give consent, its already doing the eugenics job, the procedure is redundant from that standpoint.
Second, I think eugenics got a bum rap because of how people extrapolated it. At a basic level its not racist to say "definitively bad genes should be discouraged, and definitively good genes should be encouraged" The trouble is in defining definitively good and bad. Eugenics followers got themselves in trouble by (poorly and unscientifically) defining good and bad genes to include things like "minorities & immigrants = bad, white & rich = good".
Strip the racist crap off, and you're left with something that fundamentally makes sense. Some people have genetic problems so severe that they should not reproduce. They couldn't take care of their kids even if they had healthy ones, and their kids have a higher likelihood to have the same defects, creating a generational burden on society.
Alright, I made reference to stigma because of what I thought "Most of it I think was that his "cuteness" as a child allowed caregivers to respond his behavioral/physical problems with some sympathy instead of "ugh, get me out of here" implied. Upon further reflection it's not entirely a stigma issue per se anyway, but perceptions inevitably play a part, as they do in every such issue.
I've been keeping the personhood aspect of this case on the backburner as I haven't looked any further than the original article, but assuming that she has none then most any objections along these lines are moot anyway. I however did think that whilst the law can be changed, the procedures undertaken here are irreversible, so I nonetheless still make a distinction, however slight (and inconsequential) that might be.
We could probably make a more detailed thread specifically on eugenics later, but for now, my concerns are not so much about the value-laden racial bias, but along a more recent trend of exploration typified by experiments on homosexual rams (the agenda allegedly being to find causation and therefore cure). Without wading in too far just yet, I do think some fine lines have to be drawn between balancing fixing the disability effect from some genetic conditions and a generalised institution of eugenics as the latter will simply tend to incest (it has a negative impact on genetic variability and thus species survivability).
For starters, where the condition would make it largely impossible (from a primarily biological standpoint) to reproduce, then it would be reasonable to take into account other factors and implement screening processes. But as of present this remains a huge ethically grey area.
I've been keeping the personhood aspect of this case on the backburner as I haven't looked any further than the original article, but assuming that she has none then most any objections along these lines are moot anyway. I however did think that whilst the law can be changed, the procedures undertaken here are irreversible, so I nonetheless still make a distinction, however slight (and inconsequential) that might be.
We could probably make a more detailed thread specifically on eugenics later, but for now, my concerns are not so much about the value-laden racial bias, but along a more recent trend of exploration typified by experiments on homosexual rams (the agenda allegedly being to find causation and therefore cure). Without wading in too far just yet, I do think some fine lines have to be drawn between balancing fixing the disability effect from some genetic conditions and a generalised institution of eugenics as the latter will simply tend to incest (it has a negative impact on genetic variability and thus species survivability).
For starters, where the condition would make it largely impossible (from a primarily biological standpoint) to reproduce, then it would be reasonable to take into account other factors and implement screening processes. But as of present this remains a huge ethically grey area.
Well I have read over the blog. After reading all the investigating that the family did with doctors and the ethics committee at the hospital I think that they did something that as parents they felt would be the best for their daughter in the long run. I would have to agree.
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mtatum4496
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Did anyone see the write up in Time Magazine? I think it pretty much covered the same ground as the blog. I have to admit this was not something that was done in haste. A lot of thought, sweat, research, and soul searching went into this decision.
I hope I never find myself in a similar position.
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