Huh. Another interesting medical ethical dilemma. Last month, there was a NYT article about parents with disabilities using fertility technology to intentionally select embryos with the same disability. Now there's this AP article at msnbc.com about the parents of a severely mentally and physically disabled 9yo girl. The parents chose for the girl to have surgery and receive hormone treatment to stunt her growth. The parents have a website where they present the case: reasons, procedures, results, etc. An excerpt:
We want to avoid sensationalism or philosophical debates about what we did and why we did it. We’d rather care for and enjoy Ashley than get into endless debates. In our opinion, only parents with special-needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers. Furthermore, in the case of the female aspects of the treatment, women are in a better position to relate to these aspects and the benefits for which they are intended.
Yay for avoiding sensationalism. I'm all for discussing the philosophical issues involved here, but I have no desire to hold the parents to any conclusions. I was a bit shocked when I first read the article, but that was mostly due to the fact that I'd never heard of such treatment, i.e., that it was new and fangled. (Apparently, some aspects of the treatment are not new, just not well-known. The website mentions something about growth-stunting treatments of the 60's and 70's when it was undesirable for girls to be tall. Ack. Maybe that's what happened to me. I want my homones back!)
Anyway, so it's sort of new and it's a bit startling. Drastic. Permanent. It brings up some of the same concerns as the disability selection article, e.g., making permanent choices for people who are in no position to state or have no ability to have an opinion on their own treatment. Of course, there's the major difference of choosing to have a disabled child versus having a disabled child naturally (naturally? accidentally? in the normal course of things?).
What to think about the 'Ashley Treatment'? This guy weighs in that it's wrong:
I understand the parents’ logic. And I can even understand how a medical team might come to agree that a person who cannot move will have a better life small than big. But I think the Peter Pan option is morally wrong.
I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families.
True, it may be better if Ashley does not become sexually developed in terms of protecting her from attack. But that can be said of any woman. To surgically remove her breasts is simply to maim her in a way that ought not be done. She needs a safe environment at home and if the day comes, a safe environment in an institution. Lopping off her breasts to keep her safe cannot be the right or the only answer.
There are many parents and families who deal with severely disturbed children and adolescents. More than once a parent of a child with severe autism has told me they do not know if they can physically manage their child. Others worry about their children harming themselves or others due to their mental illnesses or disorders.
The problems Ashley and her parents face are terribly real. But permanently freezing a person into childhood is not the solution. Families like Ashley’s need more help, more resources, more breaks from the relentless pressure of providing care and some hope that their daughter can be somewhere safe and caring after they are gone.
America has not yet made that promise to Ashley or her parents or the many other parents and kids who face severely disabling mental illness and impairment. We should.
The msnbc.com message board on the topic currently has approximately 1,400 posts. I've only read a few bc I get pissed off at the comments that clearly indicate that the authors haven't read past the one article. Those would be the comments along the lines of 'I would never do this to any child of mine!' Now you can probably guess where my opinion falls.
Back to the Caplan dude. Check out the first quoted paragraph. He can understand the parents' logic. Okay. He can understand how medical types would agree that a severely disabled person's quality of life would be better as a smaller-sized person. But it's still morally wrong. Why is that? It's bc there are other options that (he thinks) should be available, but aren't. The options that should be are the ones the parents should take. I know this is going to sound terribly Rumsfeldian, but such parents make their decisions based on what is, not what should be (whatever that might be and whoever might be determining it). I don't mean that at all as callously as Rumsfeld's comment sounded. I just wonder how can it be morally wrong to not take an option that doesn't exist. The treatment in question is time-sensitive. If they're going to do it all, do they wait until a decent society provides what Caplan thinks it should? I'm usually an optimistic person, but I wouldn't be surprised if anyone reading this were dead by the time all that good stuff happens (if it happens at all). So the context in which the parents are making this decision is not a context in which certain desirable options actually exist. I would think that actual options are an important part of the moral calculation.
Moving on. Wrt breast removal and the same business being said about any woman: Yes, all women are vulnerable to sexual assault. All people are. Ashley is so not any woman. IIRC, Ashley has and always will have the mental age of an infant. Healthy adult women can decide for themselves if and how they want to deal with the realities of sexual assault risk (and personal violence in general). A young women in NYC might carry pepper spray, live in as secure a building as she can afford, call her friend when she gets home late at night, etc. Or she can say, 'Fuck it. I'm not a victim. I'll live my life the way we should all be able to live our lives.' When she's 75yo, she might house-share with a friend, call a relative regularly, have one of those things she can press when she's fallen and can't get up, etc. Or she can continue to say, 'Fuck it....'
Ashely cannot do that. She may well outlive her parents. Her siblings, for whatever reason (and I won't go into them here bc that would be a whole 'nuther ball o' wax), may not care for her at home. She ends up in an institution. Even the loveliest and most conscientious of institutions cannot guarantee that Ashley will not ever be sexually (or otherwise) assaulted in any way. Who can guarantee that? It could happen when the most loving of parents leave her at home with a carefully screened caregiver for two hours. Perhaps 'Lopping off her breasts to keep her safe cannot be the right or the only answer.' But what is the answer then? Trusting that it won't happen? I'm not entirely comfortable with removing breast tissue so breasts don't develop. Sexual assault and 'sexualization' of Ashley in the eyes of caregivers were just two of the considerations surrounding breast tissue removal (comfort and a family history of breast cancer were others). But if Caplan doesn't like it, it's hardly helpful to say it's wrong w/o offering the parents some other option they can take.
Along with breast development comes menstruation. At first I thought, 'Well, what's the big deal about menstruation?' Admittedly, I've been lucky in that department, especially as long as I've been on bc pills. I start menstruating every fourth Tuesday between 10:20 - 11:50 am and it seems like I'm done 20 minutes later. Not really, of course, but it's been a breeze. But it is painful for some. Perhaps Ashley's parents could have waited to see how she does and, if she has problems, use drugs for cramps or those new bc pills that give you a period 4x/year or something like that. Then I read that some severely disabled adult women have actually been frightened by their menstrual fluid. Others play with it. Makes sense when you remember that some severely disabled adult women are adult in body only. Also, a pregnant Ashley would never be an involved mother. I wonder how her body could handle a pregnancy. Perhaps I need to remind myself that again, as basic as menstruation is for healthy adult women, Ashley is so not any other woman. Now that I think about it some more, this is probably the least problematic part of the treatment.
Next up: the remaining paragraphs. There are many parents and families like Ashley's. Severely disabled adult children are difficult to care for. Keeping a severely disabled child small is not the answer. These parents and families all need help. Too true, but where is this help? Where all are the good things previously mentioned - adult sized mobility and bathing devices, homecare assistance, caregiver respite programs, etc.? What should Ashley's parents do as they plan for their daughter's future care? Should they decide not to do any of the treatment bc there are possible options that they might choose if they were available, these options possibly not coming within the parents' or Ashley's lifetimes? So, as I'm sure you can see, one main beef I have with Caplan's assessment is that it treats possible options as actual options.
Another is that there's this assumption that it's best for a severely disabled child to mature into a severely disabled adult. Apparently, large breasts and breast cancer are in Ashley's lineage. Some healthy adult women with breast cancer in the family choose to have mastectomies. Some have genetic info that they carry the gene for breast cancer. Some don't, but have had enough female relatives suffer from and/or die from breast cancer that they live uneasily with the possibility. Some women with large breasts have breast reduction surgery to reduce the strain on their backs. Ashley cannot make these decisions; her parents are stepping in to make them. Maybe it is better for a severely disabled child to not develop breasts than for a severely disabled child to mature into a severely disabled adult who develops large, fibrous breasts and gets breast cancer. The fact that there are many parents and families who struggle with caring for severely disabled adult and minor children doesn't mean that one option best serves all such children.
And finally, practically speaking, saying it's morally wrong and that there should be other options available doesn't help. Ideally, maybe the Ashley Treatment isn't the right or only option, but, given un-ideal circumstances, it might be the best option.
My opinion isn't the right or only option, of course! I'd be delighted to hear why I should think otherwise.