On Keeping a Disabled Girl "Small"
I have had several requests from readers to comment on the story of the cognitively disabled girl named Ashley, whose parents subjected her to hormone treatments and invasive surgeries (hysterectomy, mastectomy) to keep her "small." The point of these "treatments" was to ensure that by remaining at about 75 pounds, Ashley's care could still be provided by her parents. I did not comment immediately because I wanted to think about it, and part of me hoped avoiding opining at all because it is a very unusual case involving good people. But now media are calling, and so it is time to take a thankless step into the void.
I certainly don't question the parents' motive. They thought this was the best way to continue to be able to care for their daughter at home. Still, the core questions as I see them, are whether these interventions supported Ashley's intrinsic worth and whether they were therapeutic and therefore ethical for a doctor to perform.
The answer to both questions, I think, is no. The treatment involved invasive surgery requiring full anesthesia, the potential for infection and significant pain, perhaps even death. The purpose was to prevent healthy and natural development, not treat an illness or ameliorate an injury. The motive was love, I agree. But, in the end, I think it was wrong.
Think about it: If Ashley were not profoundly disabled, the parents would be brought up on charges of child abuse for forcing her to have unnecessary and untherapeutic surgery. Or consider this somewhat crude analogy (which I don't intend as a cruelty and I know is inexact); parents who give their daughters female circumcision motivated solely by love in the firm belief that the procedure is the only way to guarantee their daughter a future husband and the security of marriage. Their motives might be utterly virtuous, but most of us would still call it a mutilation. Or what if the only way to keep her small were to amputate her legs? Would that be acceptable?
Cases like this are very tough. The parents, I believe, genuinely wanted to do what was right by their daughter. But in the end, actions matter more than the motive. I believe the doctor should have refused to perform the surgeries and probably not have agreed to prescribe unnecessary hormonal therapies. As for the parents, I honor their love and devotion to Ashley, but this was a step too far.
I hate to say it, but I think any such future cases should be decided beforehand in a court of law, with full arguments made on both sides of the question. I can't think of another way to protect the profoundly disabled from well meaning but potentially dangerous and unneccessary medical procedures.
Post Script: How's this for an irony. Ashley requires a feeding tube. If her parents had wanted her to receive "death with dignity" by removing tube-supplied sustenance, there undoubtedly would have been less of a ruckus and cluck-clucking.
Post Post Script: What if Ashely were a boy and rather than a hysterectomy, he were given a castration. Would this change people's thinking about the issue?
posted by Wesley J. Smith @ 10:28 AM
6 Comments
6 Comments:
I noted this out of the article:
"The case arose when Ashley, at 6 ½, began to show unusually early signs of pre-pubescence, including pubic hair and the initial stages of breast growth."
I am very conflicted about this because I have a profoundly retarded sister and I also represent providers of care for the mentally retarded.
Had my sister not gotten so big, she might have remained at home for much longer.
Also, some of my clients' clients have severe behavioral problems which are exacerbated because of size. They become extremely dangerous as they grow and the hormones kick in.
I believe that sterilization of the mentally retarded in institutions still happens because of things that go on there (at least it was still happening when my sister reached puberty)--which is also surgery with risks.
I think that this is a hard ethical issue to consider.
I have to agree with Wesley on this one: Cutting off the girl's breasts and preventing her normal development to average height and weight are mutilation, not treatment. I do think we can tell whether development is normal. A woman who has unusually huge breasts that cause her back pain and spinal problems is not mutilating herself if she has surgery to have her breast size reduced somewhat. But cutting off a little girl's healthy breast buds (it's not like she had breast cancer) altogether is inhumane, despite good motives.
"What if Ashely were a boy and rather than a hysterectomy, he were given a castration. Would this change people's thinking about the issue?"
That is another difficult question. I have had to help clients because of incidents of rape in institutions and group homes. It is the goal of the providers to give their charges the "least restrictive environments" possible. If a client is incorrigible because of his disability and hormones, would it be more humane to castrate him--rather than putting him in lock down?
In such an instance, I favor protection of the innocent against the incorrigible (even if the incorrigible happens to be mentally disabled)
In Ashley's case, I really wonder if she was developing "normally". It sounds like something was going on that may have made the doctors believe that they were acting ethically. For instance, if she was entering puberty at the age of 6, did that incur risks such as cancer or other conditions?
Even if a child is entering the pre-pubescent stage (which isn't the same as entering puberty) unusually early, I cannot see that this justifies the extremeness of the methods taken--cutting off the breasts, for example. If you had a mentally normal child, the child entered pre-pubescence or even puberty early, and you were worried about such things (the _possibility_ that this could increase cancer risk, though the child presently had no cancer), you _certainly_ wouldn't start cutting off breasts and performing hysterectomy on the mere chance. No one would do this to the child if it weren't for the mental disability issue which connects to her care. The parents are very clear about this. They by their own admission weren't just trying to delay puberty, which even if advisable could probably could have been done in a less drastic fashion, but to *keep the girl small*. There's no ambiguity about this, and as far as I'm concerned, no excuse for the level of invasive and mutilative measures taken.
I've followed the news articles on this girl, and it seems to me that the key point is that she has the mental age of a 3 month old. This is a disabled girl who will never have any awareness of who she is in place and time, would never, if she continued to grow, be aware of being an adult. The description of her place in family life very much reminded me of my own sons when they were infants -- couldn't do a lot of much, but laughed and smiled and enjoyed being held.
I'm reminded of, in contrast, the teenager who was a foster son of my former day-care provider. He had a mental age of 6, I was told, but he understood in some way that he wasn't six -- he played with the children as one of them, but he knew that he couldn't roughhouse with his full strength.
I'm also reminded of former neighbors with a severly disabled son -- I think in terms of physical ability no better off than Ashley, and he did live in an institution (he spent afternoons in the family but nights at the institution), which the parents said was because they knew that as he got bigger they wouldn't be able to care for him at home anyway. He was still quite young when we lived there, and they believed that he potential in his mental capacity.
Anyway, Ashley's case just seems in another category, to the point where medical treatments appropriate for her may be different than for even most disabled people. It reminds me of something I once read about a blind person whose eye became diseased in some way or another and had to be removed -- my memory is vague, so just as a thought experiment, in a sighted-person clearly much more effort would be made to save the eye; the decision to "mutilate" the person by removing the diseased eye becomes appropriate for a blind person.
Where to draw the line? I would be more comfortable if the treatments had the effect of ensuring that she would simply be a very small woman, and am not really clear on what the impact is/will be ultimately (my mother is 4' 9" which isn't much different). I don't know about a treatment that ensures a boy will never physically mature into a man, as opposed to becoming a very small man. But in either case, the point is that when a person is simply never capable of mental or physical development beyond that of an infant, the parameters of appropriate medical treatment -- while still respecting her humanity -- have simply got to be different.
(By the way, I saw Peter Singer on a "serious" TV talk show, and he is a creepy man -- after featuring a Down's girl left to die after a late abortion, but ultimately adopted by another family dispite disabilities made worse by the premature birth without initial medical treatment, he basically in front of the parents told the moderator that the child indeed should have been killed to respect the birth mother's wishes because "ein Kleinkind hat kein recht zu leben" -- "a toddler has no right to life.")
Hi, Betsy. Thanks for commenting. The context is obviously an important aspect of this story. If Ashley were not so profoundly disabled, it would clearly be child abuse. Still, it risked her life for a non therapeutic reason as to her.
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