Ashley Wannabes
The Telegraph has the story of a single mother of a 14-year-old with cerebral palsy who wants her daughter to have a hysterectomy. She is fully supportive of Ashley's parents, who appear to have set off the debate that they wanted.
We are in danger of emotionalism overtaking sound medical judgments and ethical reasoning. We all empathize with parents caring for disabled children. I have cared for a developmentally disabled man with grand mal epilepsy (the best human being I have ever met), so I am well aware of some of the issues involved. But does a non therapeutic surgery suddenly become therapeutic if the patient is disabled? Is it ever really right to risk life by taking out healthy organs for non medical reasons? And I repeat the question: Should disabled boys be castrated to keep them from maturing sexually if it will make them easier to care for?
And if it's okay for cognitively and developmentally disabled children, what about the elderly who lose their capacities? Should we also perform non therapeutic procedures to give them a "better quality of life?" I mean, should we break the legs of Alzheimer's patients to keep them from wandering?
This situation needs cooler heads.
posted by Wesley J. Smith @ 6:40 PM
11 Comments
11 Comments:
One thing that this article doesn't say is what the girl's mental ability is, which is troubling, since as I understand it, cerebal palsy doesn't affect a person's mental capacity at all. So this girl, while unable to communicate, is presumably able to understand the world around her. I said "troubling" beause the article above didn't seem to consider it as important that she would one day be an adult.
(I also found it odd that the mother was more concerned about the side effects of period-eliminating contraception than the risk, as in any surgery, of a hysterectomy.)
But the interesting issue is that there are accepted ways that non-disabled people undergo "mutilating" surgery at the present -- the key ones which come to mind are a tubal ligation or vasectomy, sex-change surgery (which I don't particularly agree wtih, but never mind), and women with high breast cancer risk who undergo "preventative" masectomies. So I'd be interested in where you draw the line.
I think the example of people with Alzheimer's is a good one.
This stuff is a giant step backwards.
Besides, I thought forced sterlization of the disabled was illegal in this country, or at least in many parts of this country.
The only "quality of life" which seems to be important is the "quality of life" of self-centered parents.
It strikes me that there is a lot going on. Sure, there is a desire to be able to properly care for one's children, which is easier when they are smaller. But underneath this, and I could be wrong, I detect a heavy desire to control, to keep the disabled person sweet and innocent looking, to stop the clock. Frankly, I would be interested in what mental health professionals thought about this.
Deep Toad:
Having had five women in my family die painfully from breast cancer (apparently my father's side is prone to a more volital version of the disease), I think a preventative mastectomy might be a good thing - I really DON'T want to die before my time is up.
Now then.
This is another hair-pull. I HAVE severely disabled children in my family - my middle sister's oldest son is so severely autistic he will never talk, and after he hit puberty he became so violent that she had to put him in a group home because he was a physical threat to his little brother (she is a single mother and cannot afford nursing care for him). I honestly cannot say whether I would out-and-out have opposed him being castrated if I was told that it would prevent him from becoming so violent that he would be forced to leave his mother, who loves him very much and misses him terribly. His little brother is also upset by the separation - when not moody, Mark (the autistic boy) is an angel and he and his little brother got on very well, with the little one playing "big brother" most of the time.
Their entire family was split up! They don't even live in the same state anymore - she is still in New Jersey but Mark had to move to Pennsylvania.
Now this is a very different case, of course, because the girls are highly unlikely to ever become violent, and even if they did they don't have the motor capability to physically harm someone. But does that make it worse?
Is it possible that a hysterectomy might increase the length of the child's life? Might improve the quality of care she receives?
And is that any justification for what she's going through?
I think my head is going to explode.
"Now this is a very different case, of course, because the girls are highly unlikely to ever become violent, and even if they did they don't have the motor capability to physically harm someone."
I've had to help clients because of such girls getting violent. Some of them have plenty of motor capability to hurt others. One of them yanked my sister down to the ground (she's big and tall--and very gentle) and broke her femur years ago. She continues to have circulation problems from this.
See my comment about breast cancer on the previous thread. There's apparently no special reason to fear that in this girl's case. This isn't being done for reasons specific to the case but for reasons that could apply to any severely mentally disabled child.
As to violence, *even if* surgery were justified on violent children who cannot otherwise be controlled, this child is not violent. Once again, and again, and again, this is all entirely "what if" and in that case could be used for anyone. Shall we prevent puberty by these sorts of incredibly drastic measures in all mentally disabled boys and girls because puberty _might_ make them violent and uncontrollable? That's crazy. You can't justify something like this on the pure off chance.
wesley says, "I detect a heavy desire to control, to keep the disabled person sweet and innocent looking, to stop the clock." -- That's startling, and an insight that I haven't read anywhere in discussions I've seen yet. There are so many facets to this debate, and the practical issues of making it more likely that the disabled will get appropriate care and be able remain in a family environment is an important one, but it is definitely true that people feel much more comfortable with disabled children than disabled adults, and if decisions are being influenced by this, it's not a good thing.
(Of course, my reaction to the growth-stunting treatment is influenced by being in a family of very short women -- I'm 5' 3" and tower over my mother -- so the situation doesn't seem as extreme to me. But I guess the question is, will she be thought of as a "short woman" or a "child"? And castration for a disabled boy would result in a permanent "boy" rather than just a short man, so I tend to think of a difference here.)
And more questions I'm pondering:
- what "shortcuts" are acceptable in caring for the disabled? A vision in which every disabled person is provided a stimulating environment for every moment he/she's awake is utopian. (I would imagine that an adult female quadraplegic woman might well want one of the new contraceptives that are being marketed as eliminating/reducing menstrual periods, just to make life easier for her caregivers, whether family members or nurses -- who, as I understand it, are hard to find.)
- Is it all just about consent? If a severely physically disabled young woman had asked for a hysterectomy, would this be acceptable? And, if so, what about the parents' right to make medical decisions for their children? (Also note that the arguement the parents make is, in part, also a medical one, that a small woman, with small breasts, faces fewer bedsore problems.)
- Is it appropriate to make a distinction between someone with complete mental capacities (and there, whether they can communicate their thoughts effectively), some self-awareness of their situation, and someone at Ashley's level of functioning? (I don't mean in terms of their right to care, but in these sort of medical decisions.)
- It doesn't seem to be about forced sterilization in the same way as in the past -- the motivation for the hysterectomy is not to prevent the birth of a "defective" child, nor does it deny the rights of someone who could someday wish to have children.
- Incidentally, nowhere in this discussion should the parents be called "self-centered." A parent of a disabled child who cares for that child at home (whether part- or full-time)make so many sacrifices, in comparison with the way they could live their lives if they'd given up custody of the child, that to accuse them of selfishness for wanting to make their lives modestly easier is mean-spirited.
Betsy, they have been very explicit that the intent is to prevent her from maturing physically. That isn't really just a conjecture on Wesley's part. It is openly admitted. Note on the earlier thread (Gregory Ford pointed this out), it is the parents who quote approvingly a man who says it is "grotesque" that a person with the mind of an infant should have a mature, fertile, woman's body. That is telling and is pretty unequivocal. The idea is _precisely_ to keep her physically from developing the characteristics of a physically matured woman.
Note, too, that her breasts have been completely removed. The buds were removed, like dehorning a calf, so they won't grow. It wasn't a matter of waiting until they matured in the first place and reducing their size spmewhat because they had grown too large for her comfort.
P.S. I'm probably about the size of your mom--very short. But I don't take it that a short person is per se maimed or deformed nor that anyone who criticizes Ashley's parents is saying anything against shortness. But you and I are naturally small, not small because someone deliberately stunted our growth with large doses of hormones. _That_ is in my opinion an entirely unwarranted intervention. Growth is a natural process, and they didn't want hers to continue even until she reached average height.
Remember, Betsy: Before the sentence you quoted, I said I could be wrong. I have no facts upon which to base my concern. I am just getting weird vibes, and that could all be me. But wanting there to be other "pillow angels" created through untherapuetic and deeply invasive surgeries, requiring intubation and etc, seems odd. PLUS, they say they had no trouble making the decision. But given the potential risks and discomfort, it strikes me that such a choice would take much pondering and contemplation. Seems odd, that's all.
OF COURSE there is nothing wrong with being diminutive. My mother is 4'10", and her mother was shorter than her. I am 6'1", although in my dotage, I may have shrunk a bit, so go figure.
The issue here is removing healthy organs. The hysterectomy was to keep her from having periods, etc. The breast removals served absolutely no therapeutic purpose other than to prevent possible future discomfort! Did they not want to see her as more than a small child? ??? The hormones were to keep her from growing tall.
And now the parents are urging that other caregivers/parents of profoundly disabled children consider "Ashley's treatment."
THEY are making this an advocacy issue. This means we need much more information than what they have chosen to publish on their blog.
This isn't really a "hard" question at all.
Parents who resort to this should be brought on child abuse charges. Doctors who perform unnecessary surgeries and hormone treatments should have their medical licenses revoked.
One is either for the civil rights of ALL people or they are not. Period.
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