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The 'Ashley Treatment'

  
  

Page: 1(2)34

 
 
ONLY NICE THINGS
01:59 / 06.01.07
Which is to say, are we assuming that somebody who is disabled, but is able to write at length and with conviction on the Internet is equivalent in terms of the treatment they receive to somebody who is unable to move their limbs or communicate? Obviously, we can argue about whether or how Ashley could be induced to communicate, but at present the question of whether or not she is able to do so is ... under-researched, let's say. Should Ashley be treated as if she were able to form this kind of argument until proven otherwise, and if so for how long?
 
 
ONLY NICE THINGS
07:56 / 06.01.07
To expand a little - the list provided by Amanda Baggs and linked to by NRJ is, as far as I understand it, of people with autism who are also "aug comm" - able to communicate to a heightened degree - is that right? What I'm having some trouble getting my head around is the move from there to the position that an inability to communicate is a kind of proof in itself that not enough effort has been made to communicate, especially in a case like that of Ashley X, where it appears that there is real, you-can-point-to-it brain damage. Which damage does not necessarily preclude a miraculous achievement of communication skills, but does, as far as I understand it, make it miraculous.

As I said above:

At what point do you decide that a state is entirely static? How long does Ashley have to stick around being developmentally at a certain level before you decide that there is no likelihood of her developing into something resembling an adult human being, and that the value of a child's mind is purely located in its ability to mature into an adult's mind, and without that that there is no value to it, and that it can be shut down at will? And, frankly, if a human being without the mind of an adult or a so-great likelihood of developing one has no actual value as a human being, why stop at euthanasia? And, for that matter, why shouldn't one keep such developmentally inactive humans as something akin to pets, since they have no value-as-humans?

At the other side of that argument is Natty Ra Jah's belief that it is meaningless to talk about persistent or static states, and thus that every human life must be treated as having equivalent value to a fully "developed" adult human life, since the potential of development that gives a neonate value remains inherent. That's a secular equivalent of the Schiavo view, in essence.

And I think the gap there, for me, is the question of whether there is an inviolability under law which does not only extend to people who may at some point become communicative, cognitive entities, or to whom the wrong communicative overtures are being made by an inconsiderate care system or inconsiderate parents, but also to people who actually are, simply and according to Hoyle, not able to conceive or communicate wishes. Is every uncommunicative person, whatever the reason for that lack of communication, to be seen as somebody whose wishes have not been successfully heard, rather than somebody who has no capacity to wish, and how does that then feed into the rather odd usage of homo sacer we saw above?
 
 
Elettaria
16:06 / 06.01.07
To go back a little to the point raised by Twice Five Toes raised, at whom, despite the rant below, I'm not having a go,

And Social Model should be explored further, here, I think.

In short: society should adapt itself to accomodate disabled people, rather than demanding the adaptation of disability to suit 'society'.

It's a nice idea in some ways, but it falls completely flat in others. To begin with, it assumes that everything is some sort of social interaction. I recently sold my marimba (large percussion instrument) because I no longer have the muscle strength to wield the mallets, nor can I stand for long. Nothing social there, and nothing that can be done to accommodate it. It also appears to deny the validity of suffering from illness/injury etc., and to be against medical solutions. What is the social solution to pain or a lower life expectancy? What would be the alternative to wearing glasses to correct severe myopia? If I'm too ill to get out of bed let alone to the shops (NB: I have M.E., this example applies to this specific condition), one social solution is to get someone else to shop for me, another is to have someone take me in a wheelchair, get rid of the crowds and noise and change the lighting so that I don't get sensory overload (I presume that my wearing specialist coloured glasses and white noise generators counts as a medical solution), and so forth, and I'm going to ignore the problem that I'd still collapse afterwards. I'd rather not be ill in the first place and be able to shop unassisted and without all this fuss (most of which isn't practically possible anyway), thanks. I frequently have more trouble from standard disability accommodations than I do with the "normal" equivalents: large print is a nightmare for me to focus on, disability equipment too often assumes that bigger is better and ends up too big for me to grip, long ramps that exhaust me because there's so much further to walk and the slope makes me dizzy. You can't make universal accommodations that will suit everyone, and even with the best will in the world and bushels of funding, too many accommodations aren't possible. Most people with disabilities would far rather simply not be disabled. As for "differently abled", I admit that the phrase makes me see red. It's coy, it's begging to be mocked, and most of the time it simply isn't true. Disability is not just doing something a different way, and it rarely brings freebies with it, let alone ones that are enough to compensate fully for the original disability. Dignity, for instance, is a birthright and something people with disabilities often have to claw back, but that doesn't then mean that it's because of the disability.

As a means of pointing out society's responsibilities and helping get rid of the stigma that so often attaches to people with disabilities, the social model has its uses. Regarded alone and without the medical model, it provides a warped view. Both are needed together, but I'd still place the medical model first. Disabilities, by and large, originate with the disabled person, not with society. You can make every social accommodation you want, this child, Ashley X, has been short-changed in life. She's got a life I wouldn't wish upon anyone, she has suffered enormous loss, and so have her parents, even if she spends much of her life contented enough, even if they have still managed to find joy in their daughter.

...Which is a slight side-track, because the problem here is that Ashley's disability raises both social and medical problems, and the solution that has been tried is a medical one, whilst most of the particular problems it is purporting to treat are social (and it's hardly of proven benefit for the few medical ones, indeed may turn out to make them worse). Inappropriate medical treatment in one case doesn't mean that medical treatment of any sort is always inferior to social solutions for disabilities in general.

Why are some people trying to split disability into social or medical, when it covers both areas? There's a distinct whiff of blame about the notion.
 
 
alas
17:08 / 06.01.07
I just want to say that I'm learning a whole lot from this thread; thanks so much to everyone who is contributing--I especially found the comments on my own not-fully thought-through posting generous and useful. And, Elettaria, I don't think your posting comes off as a rant--the point that disabilities are always both social and medical needs to be made; your whole posting is really stirring some things up in my head, but I need to ponder all this further.
 
 
Twice
19:28 / 06.01.07
Elettaria, I largely agree with what you say. If it appeared that I was advocating Social Model as a cure-all, I did not intend to. Its intention is to provide an alternative approach to disability, rather than direct intervention. Historically, disabled people have been cared for by professionals who make a great number of decisions on their behalf. In the UK, at least, decisions about care are beginning to be made by disabled people themselves. Where people are unable to communicate their own wishes and demands, the onus falls on parents, advocates and wider circles of support to make decisions on their behalf. In Ashley X’s case, the conundrum (and this is why it should be explored) is that her parents, who have legal responsibilities for her as her advocates, have used exactly this type of self-directed support to demand treatment, rather than have treatment imposed on their daughter by others. The conclusions her parents came to needed to be heard by an ethics committee. Personally, and from a distance, I experience moral discomfort from the conclusion that committee reached.

Back to the Social Model itself. This does not claim to replace or offer alternatives to medical intervention. Where medical care is required, it should be accessed, but in the cases of many disabled people this care, or correction, is elective. Social Model tries to ensure that the subject hirself has primary control.

You ask

What is the social solution to pain or a lower life expectancy?

Both of these are in most cases largely unavoidable. A medical intervention would clearly be indicated either through treatment or pain relief or both. A social model approach to this would be to ask the patient how they want to live that life, and under what conditions. A Medical Model approach would be for health professionals to make decisions about whether the patient should be taken into residential care, how often they take medication, what time they eat, what they eat, when they have their toenails trimmed, whether they get their hair washed, how hot their bath water is, how many family members can visit at one time, who changes their continence pad, who sees them screaming in pain. At a domestic level, this means that the disabled person loses control. The Social Model approach to this situation would be for funding authorities to ask “What do you want to happen to you?” and then fund it. It is surprising how often the latter course turns out to be the cheapest.

The Social Model does not try to replace medical intervention. It allows disabled people to decide which interventions they want for themselves. Yes, both are needed together, but when you are disabled, life will always be a compromise.
 
 
Blake Head
20:33 / 06.01.07
nataraja: I appreciate that this is an issue you feel strongly about. Before I reply to your points, if you believe that there is a lack of understanding in this thread and on the board as a whole and want to make more general points about disability issues, and address any common misconceptions that are made about the disabled as individuals and as a group, perhaps after more calm reflection (you mention your distress over this issue) you could approach them in a dedicated thread. We don’t currently have a Disability 101 thread, and I’d certainly be happy to hear more from your perspective. It could also be a place to discuss whether statistical data on disability should be included in the mooted Barbelith Unoffocial Demography Project and how disability functions invisibly in an online forum unless specifically recognised, even when it will inform the experiences of those who contribute within such a forum.

With regard to "likening Blake Head to an apologist for child murder" (if you want to call pointing out that the exact same arguments he is using have also been used for the purpose of defending child murder that), i refer you to Amanda Baggs's post here. Also, my post was actually an attempt to respond to (and then move on from) the ad hominems, rather than continue them.

I am personally uncomfortable that you would link a loose synopsis of my thoughts with instances of the defence of child killing, and thereby suggest that I am unsympathetic to the rights of disabled individuals, and would request that you do not do so in future. I have read your first post, some of the many comments on the BBC website, and have followed the links to Amanda Baggs’s both when you placed them in your post on this thread, and on other topics. I would therefore also suggest that implying my ignorance in this fashion is unlikely to stop divisive arguments if that’s what you were truly attempting to do. Having read that post, I fail to see its specific relevance to what you have put forward as my arguments, if you truly feel I am acting as an apologist for child murder, I would furthermore suggest to you that you make a detailed comparison of both the arguments I’ve employed and the passages from your link that you feel are relevant in justifying your assertion, otherwise I’d be happy to just let it drop with no ill will. Needless to say, I think that taken contextually my words do not support child murder or violence towards disabled children, and I consider using disability or the strain of caring for the disabled as a pretext for violence to be indefensible.

What I was reacting to was what I perceived as an overwhelming movement in the initial posts to demonise the parents without comprehensively understanding the issues, which .trampetunia acknowledges, and that I understand because it was also my first reaction to the BBC article. One of my primary aims was to ensure that this would be an issue which could be discussed rationally and all of the interesting topics it covers explored fully. The use of polarising terms like disgust, and your own frequent emboldened links to Murder, not only closes down actual discussion, but serves to give an inaccurate picture of the situation in hand. I would, for example, hope that we could hypothetically discuss a pro-choice position without being overburdened by linkage that attests that abortion is murder, and it would be hypocritical to not extend that to a discussion of individual rights where the distinction between violence and medical treatment is similarly contested. I would similarly hope that in the example above we could respect the views of others if they were expressed appropriately, even where we disagreed with the underlying principles that inform their opinions.

When using the term “normal society” I was following Twice Five Toes use of “living ‘normally’ within society’; if there’s a reason why these phrases cannot be used synonymously it wasn’t my intention to pursue it. I don’t recall using the term “mental age”, but I did feel it was necessary to re-state that Ashley has a high level of functional impairment which mean that physically and cognitively she is unlikely to the point of it being unforeseeable to be able to interact with larger society in even a notional way, and I don’t believe it is meaningless in this specific case to speak of an individual who is unable not just to communicate her consent but is cognitively impaired such that they cannot form an autonomous model in which to give that consent, and will never have understanding of or access to several adult prerogatives . To wit, your focus on female embodiment and sexuality, while perhaps relevant in assessing the motives of the parents, would appear to be irrelevant to Ashley herself, who is unable to comprehend or appreciate such concepts. She is, incidentally, not, as described by Andy Rickell in your link, a “young woman”, and will never be able to function in society as an adult woman, in the specific sense of those privileges and responsibilities than an adult woman would have. Eletarria makes several comments above on why a social model of disability does not reflect the sole impact of disability, although I agree it is yet another factor which appears to have influenced the parents’ decision regarding her care. What is clear, to me at least, is that this is a complex issue where careful rather than sensational language may help us to comprehend and assess the factors involved in the decisions made.

Once again, how do you know it's "simply not there"?

i'd hold that the autonomy of individuals who have difficulty in being seen as autonomous especially needs upholding

Well I don’t have any privileged information on Ashley’s inner life, and I feel we’re all struggling to respond to this in an absence of information released on both the level of Ashley’s disability as well as the medical evaluation of why such procedures would be desirable or even justified.

If we accept the premise that having a disparity between physical age and comparative mental ability entails a loss of dignity, then as Haus points out, Ashley is already in a state of indignity possessing a nine year old child’s body and the mind of a three-month old baby with regards to development. If we accept the views of the medical establishment in this case that: the girl lacks the cognitive capacity to experience any sense of indignity, we might reasonably turn to the other factors that do affect her quality of life. I’m not saying, natarajah, that we have to blindly accept the views of the medical establishment in the form of specific individuals or public bodies, but in the absence of further information it is speculation to discount with the assessments they have made about Ashley’s cognitive ability.

The quote that describes “a full-grown and fertile woman endowed with the mind of a baby” being grotesque is troubling because it’s an ethical (and to a degree aesthetic) judgement guised as a medical one. What I don’t think that quote necessarily does is invalidate the earlier judgement that a having a body more suited to her cognitive level will be in health terms better for her, but I absolutely agree that it problematises the issue of the objectivity of the medical ethics representative’s judgement, in a case where the idea of possessing complementary physical and mental abilities is already problematic. Similarly, while there may be a prejudicial conception of disability, and indeed a disturbing focus on sex/reproduction, present in the views of the parents, they have not presented those factors as the primary cause for the surgery, whose medical benefits are at this point, I feel, still unclear.

Following the points Haus raises, I think we are approaching this case from differing perspectives on how accurate it is to discuss Ashley in terms of an autonomous individual with a restricted ability to communicate her wishes, or as someone who lacks both the ability to mentally construct the desires and sense of self we would associate with an autonomous individual, and where it is appropriate for their legal rights to be protected by another party. To reiterate, what I’m most interested in this case is to question which, if any, of the other parties tasked in looking after Ashley’s rights, have acted inappropriately, and where the responsibility for her care has not been met.

While the usage of homo sacer has been used negatively to apply to groups on political and racial grounds, the basic idea of biological life without political or social significance does not immediately seem to be a misapplication in this case - as long as one is able to accept that terms and arguments may be used towards different ends.

What struck me while writing my first post was that at several points it did, as sdv points out, depend upon the consideration of a person capable of only minimal social interaction and capacity for self-reflection as having the legal rights of an individual. At what point a person gives up those rights is probably a topic to itself, so I’ll just add that I thought it was in those circumstances, where the rights and conveniences of others might legally be able to take precedence (up to and including non-voluntary euthanasia – I don’t think sdv was baiting the thread) that the isolated act in that the parents of Ashley X very clearly do consider her to be an individual, and have taken action that they consider to be in her interests rather than theirs, where there was perhaps no legal necessity to do so, is to be commended. Whether the assumption of that responsibility over another person has gone awry is harder to say.

Does anyone have any knowledge of cases where girls have not gone through puberty, in terms of what effect this has on their bodies?

Not me, although as I understand it the procedure in this case partly involves artificially initiating early puberty so as to drastically minimise its effects, which means that a post-pubescent childlike adulthood may eventually be a technically more accurate description.
 
 
Elettaria
15:26 / 08.01.07
Twice Five Toes:

If it appeared that I was advocating Social Model as a cure-all, I did not intend to.

Nope, it looked to me like you were suggesting discussing it, that's all! I should have known better than to assume that the Wikipedia article was the whole story. Thank you for your elucidation which makes so much more sense of the whole business. In general, it sounds like an excellent idea. The first snag which occurs to me is what to do with the minority of people who refuse to accept a diagnosis and end up endangering themselves through lack of needed treatment, for instance people who can't cope with knowing that they have cancer. (Alternatively, there's the problem of patients rightfully resisting medical misdiagnoses, of course.) These cases are a small minority, I believe, and even the medical model can't do much about people refusing treatment, though that may be about to change. The patient has access to a vast amount of information that other people involved in their care just don't have time to acquire, such as personal patterns of illness and response to medication, and while they may not necessarily have a 100% balanced, unclouded view of their own condition, there's a good chance it'll be better than that of others, and at least they're not prejudiced by considerations of time or cost (e.g. antidepressants being cheaper than therapy but not always the best option). On the other hand, there is plenty of specialist information that the patient won't have, particularly in the field of medicine. Sometimes little is known about the medical condition by anyone, and the patient may know more simply through lived experience

So the patient is often, but not necessarily, the best judge. This does indeed get more complicated when the patient is too young (or non-compos) to make some of the decisions and/or unable to communicate and responsibility shifts to relations and partners. If you ask me what sort of treatment I want, my first priority will be what's best for me, then what's best for those around me if it will strongly affect them (I can't think of any examples of this relevant to me except things like something like finding a method of contraception which suits both partners), and I'm not hugely fussed about what's going to cost the NHS the least. A carer might reverse the first two points, especially if they have to implement or pay for the treatment/care. A doctor or social worker will definitely be bothered about the cost factor to them, and you could get any combination of priorities for those three points, depending on whether it's the patient or a carer asking, and depending on what sort of treatment/care we're talking about. (I'm not wildly happy using "patient" and "carer" as the terms in this argument, but I can't think of others right now. You know what I mean.)

Which seems to have brought me back to what was said at the start, that it looks suspiciously like the parents are prioritising their own values and convenience over the child's welfare, and that even their considerations of the child's welfare appear, well, screwy. If that child could understand what was going on and communicate, would she want the treatment they've imposed on her? If the Social Model can be crudely summarised as an Us and Them situation, where are we placing carers? Somewhere in the middle, I suppose, and in this case rather too close to Them than I'd prefer. On the one hand, doctors following the suggestion of a patient or patient's representative, rather than the other way about, would seem to be a victory for the Social Model, promoting patient-led healthcare. On the other, this case is an obvious example of the risks of conflating the patient and the patient's representative like that.

Blake Head:

To wit, your [natarajah's] focus on female embodiment and sexuality, while perhaps relevant in assessing the motives of the parents, would appear to be irrelevant to Ashley herself, who is unable to comprehend or appreciate such concepts.

As long as Ashley is being treated as a potential sexual female, with her parents removing what would become the physical signs of normal adult female sexuality in case they provoke a (highly unlikely) sexual assault, it's relevant. She can't understand any of the concepts we're discussing here, that doesn't stop various issues from being relevant in this case. Anyway, she still has a female body and part of a female reproductive system, and the ways in which those have been treated and operated on will continue to affect her life. She's not been made sexless, she's been made into a human being who will be minus certain sexual or reproductive physical charactistics, who will be infertile and was already going to be unable to have any sort of active sexuality, who will have a different hormonal pattern to "normal" child and adult females, but she is still a female human being. Though my main concern in this area is that she has been treated as though active sexuality were an issue, her body modified to prevent something that originates in the conscious mind. Female embodiment and sexuality shouldn't have been relevant to this child, but they've been made so.

I think I need to go and eat before my concentration levels end up in the basement. I'm waffling and I keep getting stuck half-way through sentences. I'll leave this up in the hope that it's more or less making sense.
 
 
ONLY NICE THINGS
09:11 / 10.01.07
It occurs to me that Ashley's parents may not be the only people who might be sticking on the sexual aspects of physical maturity. From another discussion of the same subject, by the parents of a severely disabled child (unbolded for Elettaria's ease of reading)

****

We were overjoyed to learn about the "Ashley Treatment," or growth attenuation. […] A billion dollars could not bring as much happiness to our child in goods and services as being small and cuddled like the baby she believes she is.

Attenuating her growth would not violate the Hippocratic Oath; to the contrary, NOT attenuating her growth would knowingly cause her increasing distress and unhappiness as her "activities" became limited per her size ("activities" including cuddling and holding and carrying, given her immobility), not to mention the increasing chance of injury to her during care and transfers.

Like some children with brain damage, her head is infant-sized and will never grow. While we don't care if society is uncomfortable seeing an adult with an infant-sized head, we do care that her tiny nasal passages already labor to provide enough oxygen to a child. And what about her infant-sized feet that do not grow with the rest of her, how will they support an adult body? Given the stature of other family members, she may very well be six feet tall in adulthood.

The arguments that parents will stunt their children's growth willy-nilly are exaggerated and ignorant. Before our child's growth might ever be attenuated we will have to convince an ethics panel of dozens of medical professionals, who will be looking for every reason why not. There will not be growth-stunting clinics on every street corner.

The arguments that we should let nature take its course, that we shouldn't fix the child to compensate for society's shortcomings, or that we shouldn't take any measures for "convenience" are hypocritical. Babies are created and selected by fertilization, birth dates planned, induced, born by C-section, fed formula, and scheduled for convenience. As they grow older, their short stature is enhanced, tonsils are removed, and plastic surgery performed to correct anything nature didn't do right or to be more acceptable to society. […] No matter how utopian our society, our daughter would still be happier child-sized so that she can be close to us, as I imagine Ashley will be. […]

Thank you to Ashley's family for voluntarily subjecting themselves to worldwide public scrutiny. They have given us hope that our child may be happy and healthy in life, and that's what every parent wants.


***

I thought it was worth reproducing here precisely because it seems unconcerned with sexuality or pregnancy, seeing the various procedures (which might vary from party to party, of course) as means to a single end - a smaller child, with the benefits, as they perceive them, of greater happiness (as they have identified what-makes-child-happy as being held, carried, embraced &c) and better health.
 
 
petunia
13:12 / 10.01.07
Concerning my 'More later.' statement; i think i'll opt out for now.

I've been taking a great interest in this thread and some of the points brought up are excellent. I just think that the issue brings up too many ugly signifiers to my mind for me to speak particularly rationally and i agree that 'tabloid' anger and hyperbole don't really serve the thread.

I would definitely like to engage with many of the points made, but i will have to wait until i feel i can do so without going adrift.

I do think the fact that this surgery pushes against so many values (my values, at least) is interesting. The fact that the case involves abstract concepts such as dignity and sexuality (sexuality in its sense of 'she is a sexual being'), emotional concepts such as distress and comfort and medical concepts of health and wellbeing makes for a discussion that is important on many levels (and rather confusing for myself to get a grasp of).

There seem to be a few key questions in my mind raised by this surgery:

Should we let a concept such as dignity affect our choices in such a situation? Whose dignity are we concerned with; that of the child or of the parents?

How can we adequately estimate the future concerns of a parent? How far should we let predictions of future states-of-being affect our current actions?

At what point is ownership of one's body conferred? At what point is it taken away? ('Ownership' seen here as the option to ask for or deny a pracice/process upon one's body)

If we have no ability to communicate in a complex sense, how are we to judge what is best for a person? ('complex' as verbal communication - ability to communicate the abstract or non-emotional: We may be able to understand whether or not Ashley is uncomfortable in a given moment, but we have no way to communicate with her about future instances of discomfort) What metrics do we use for such a judgement? As the choice becomes that of the 'third party owners' of a body, how to we measure or filter our own personal feelings when making such a choice?*

I'm interested in the point where ownership of a body changes from the 'person' (a loaded term, which may need discussion - but for now can mean 'whoever is in the body') who inhabits that body to third parties? As, in cases such as Ashley's, the patient is reliant on those third parties for continued life, what rights (bizarrely, these rights would be conferred by outside authority anyway) do the patient have? Does it even make sense to speak in a political sense of a person who is not capable of political action?

Um.. yeah. Just thoughts that have been occuring to me. I hope i will be able to partake in this discussion soon, but i really want to make sure i can do so properly.

*i realise i am using 'we' in many of these sentences, and that this leads to a kind of sematic othering of the patient. I don't like this, but find it hard to express the sentence in another way. 'Patient' could be used, but i'm not sure this serves any better. My intention is to use 'we' in the sense of 'those partaking in this discussion' or 'those who would need to make such a decision'. Obviously, 'we' should always include 'the patient', but.. argh.. language... sorry!
 
 
Tabitha Tickletooth
13:24 / 10.01.07
I'm sticking on the sexual aspects as well, I'm afraid, and please forgive me if this is a bit muddled because I'm finding it challenging to articulate.

Elettaria: What about the physical discomfort from having a sexually mature body? Firstly, sexual maturity in women is not a disease, and it is rare that it causes extreme discomfort, so it shouldn’t be presupposed.

Blake Head: To wit, your [natarajah's] focus on female embodiment and sexuality, while perhaps relevant in assessing the motives of the parents, would appear to be irrelevant to Ashley herself, who is unable to comprehend or appreciate such concepts.

Elettaria [in response to Blake Head]: As long as Ashley is being treated as a potential sexual female, with her parents removing what would become the physical signs of normal adult female sexuality in case they provoke a (highly unlikely) sexual assault, it's relevant. She can't understand any of the concepts we're discussing here, that doesn't stop various issues from being relevant in this case. Anyway, she still has a female body and part of a female reproductive system, and the ways in which those have been treated and operated on will continue to affect her life. She's not been made sexless, she's been made into a human being who will be minus certain sexual or reproductive physical charactistics, who will be infertile and was already going to be unable to have any sort of active sexuality, who will have a different hormonal pattern to "normal" child and adult females, but she is still a female human being. Though my main concern in this area is that she has been treated as though active sexuality were an issue, her body modified to prevent something that originates in the conscious mind. Female embodiment and sexuality shouldn't have been relevant to this child, but they've been made so.

Elettaria's question and answer are good ones - I feel as though female sexuality in this case is being treated as an unpleasant condition which is best avoided. I understand the arguments that large breasts could prove uncomfortable and that menstruation could prove distressing/uncomfortable. However - first, as Elettaria discusses above, it's difficult to establish to what extent removing certain organs related to physical sexuality are 'de-sexing', for want of a better word, a person. Second, and I hope this doesn't sound like lunacy, but I find myself fundamentally disagreeing with the assumption that there could be nothing good about adult sexuality for this person.

I understand that Ashley would never be a physically sexually active adult, but I don't think that necessarily means that there is no aspect of physical adult sexuality that she might not enjoy experiencing. Can we definitely conclude that just having the parts of her body (that are being removed) might not be pleasurable for her? As there is so great a difficulty understanding and communicating in this case, how can we know what sensations Ashley experiences. Her parents are adamant that she loves being cuddled so she obviously does experience pleasurable physical sensations.

How does all this surgery change the way she feels - what impact on hormones and all the workings of physical sexuality that can't be removed? I don't know. I remember really grim bits of puberty, feeling very low, but I also vividly remember feeling very very high as well. I don't know how much of the experience of puberty is physically governed and I don't know what the experience of it would be like for Ashley. But I'm not absolutely certain it would be all bad, which seems to be the assumption underneath this decision.

I don't pretend to even come close to understanding the complexities of how adult sexuality - male or female - works, and I think it would be terrible if Ashley was being denied something in her life that might actually be nice.

I realise I'm skating close to very difficult issues around disability and sexuality and I genuinely do not mean to offend anyone. I hope it's clear that I am not suggesting that Ashley would be involved in physical sex acts, just that there are a lot of very pleasant sensations involved with having an adult body and I think she may be denied them. I can't know for sure that all aspects of physical sexuality are irrelevant to Ashley. Being a girl (or indeed boy) ain't all bad.
 
 
Blake Head
13:51 / 10.01.07
I think you worded it very well Tabitha. Unquestionably, female sexual maturity and sexuality should not be considered as illnesses. It’s possible I was focusing on more abstract ideas of active female sexuality, rather than female sexual identity, in response to natarajah, and posing the question (again in an abstract fashion) of how a practice that from my understanding Ashley herself (rather than in the attitudes of those around her) will never have access to or have an adult understanding of could be “removed” or avoided. Sort of how can you remove the property for something if the potential for it developing isn’t there – if that is a valid way of looking at this case. I genuinely hadn’t thought at all of the larger (peripheral?) aspects of adult sexuality and how they would operate in this case, and I think it makes the case even more complex. Whether the parents considered it or not, you may well be correct in making the point that a decision or evaluation about comfort/pleasure has been made that prioritises a desexualised rather than sexually limited model of experience, with clear consequences for the infantilisation argument.
 
 
alas
15:09 / 26.01.07
Pete Singer, weighs in on the Ashley case in today's NYTimes, "A Convenient Truth." I think I've made that a permalink so it should work for anyone, although it may require some kind of registration. Let me know if you have trouble accessing it, and I'll send the full text to you as a PM.

Singer is, as many of you know, an ethicist and probably most famous for his arguments in favor of animal rights.

Here's his conclusion: "We are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more advanced mental level than human infants. Just making that comparison provokes outrage in some quarters. But why should dignity always go together with species membership, no matter what the characteristics of the individual may be?

What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."
 
 
Ticker
18:28 / 26.01.07
thank you for the link, alas.

Singer's reference to exposing unwanted children as a natural option in the past seemed to me to be positioning euthanasia as a somehow barbaric practice compared with the more civilized one of altering the body of a child.

I'm not comfortable with automatically revving the comparison up to death = natural and altering = unnatural. Rather the issue for me is firmly grounded in the issue of consent.

Can we as a society ethically alter the bodies of others in ways not to sustain their life but to modify how they live? We have made the decision that we can for some dependents such as animals and I believe we do try to adhere to making these alterations with the goal of improving the way they live among us by changing their sexual states and form. Many parents already alter the genitals of their male infants for reasons of claimed convenience, cleanliness, and prevention of later in life health issues.

It seems to me that we have precedents in our society for altering the bodies of those that cannot consent without pressing immediate threats to their continued living.

What is the dividing line between an infant, a person we assume cannot consent, and animals we cannot communicate with if we do as Singer suggests and dismiss the issue of dignity? With animals our culture has a sort of problematic White Man's Burden history. We wish to do well by our charges but that's exactly the core of the problem as we inherently elevate our superiority over them. We know best, the standard we envision for them is better than that which they would achieve on their own.

When I examine how the Ashley treatment makes me uncomfortable it's not because of the surgeries themselves which I would support in an adult person electing on their own for no pressing health reasons but rather solely for comfort in residing in the body. So for myself I remove the natural/unnatural conflict and dig a bit deeper. I think for me my issue is with overstepping any change in another's body without their consent unless the change is clearly done for reasons of saving their life or intense suffering. Again, it seems to me that by doing so implicitly implies the being is not a full human at all. I'm not comfortable removing this set of rights from someone simply because they do not function or communicate the same way I do.
 
 
Hydra vs Leviathan
17:08 / 27.01.07
Just a quick note to say that i am getting back to this thread, and replying to the previous replies to me, it's just taking me a lot longer than i thought/hoped it would to feel up to doing so. Expect me to get back to it properly in a week or so, maybe...
 
 
diz
21:05 / 27.01.07
I think for me my issue is with overstepping any change in another's body without their consent unless the change is clearly done for reasons of saving their life or intense suffering. Again, it seems to me that by doing so implicitly implies the being is not a full human at all.

Personally, I'm not implying anything. I don't think Ashley is a full human person.
 
 
HCE
22:31 / 27.01.07
As regards her sexual development, please bear in mind that they are not taking steps to prevent her from reaching puberty, strictly speaking, as it appears that she began showing signs of puberty at age six and a half. The estrogen treatments were meant to accelerate the process and thus halt her growth early. I personally would find it a matter of concern if I had a pubescent daughter with milk teeth, even if she had no brain damage, and while I do not think that children of that age are or should be asexual, neither do I think the parents are creepily obsessed with her sexuality for being concerned about it.

I think for me my issue is with overstepping any change in another's body without their consent unless the change is clearly done for reasons of saving their life or intense suffering. Again, it seems to me that by doing so implicitly implies the being is not a full human at all. I'm not comfortable removing this set of rights from someone simply because they do not function or communicate the same way I do.

How does something like orthodontic treatment fit in with this model? Is it something you find objectionable, but just not to the same degree, because the change it produces are less radical? The suffering caused by cracked teeth is not generally life-threatening, and while having a poorly-aligned bite can cause jaw problems, headaches, and so forth, a child can often easily make it to adulthood before suffering intensely painful consequences, and then decide for himself if he wants to undergo the pain (and expense) of braces. I think it may be more practical to consider each case individually than to try to assert a principle that would group together both somebody with severe brain damage and somebody with crooked teeth.

I don't quite understand what you and diz mean by 'not fully human' -- I'm assuming you don't mean she's part mineral or something -- do you mean not sentient in the same way as people without encephalopathy? I am not familiar with the specifics of Ashley's problems, but it seems to me that either her brain cannot be determined to function (a brain that is not clearly either functional or non-functional) or her brain is distinctly damaged. If in fact her brain is so clearly damaged, as was Terry Schiavo's, that there is no biological foundation for sentience, then it is not a question of her communicating in a different way -- perhaps with the aid of mechanical or technological substitutes for controlled gestures or vocalizations she cannot produce. Without sentience, there is no mind in the usual sense with something to communicate.

None of this, in my opinion, reduces Ashley's value as a person in the sense of 'a being that is loved,' which she quite clearly is, very strongly, by her family. I do not think that parents who love their children always need to be able to communicate with them; some parents love their children quite deeply just because.

If, however, it is simply not possible to determine whether extensive brain damage has occurred, then we have a different matter, and looking at her photos, boy, does this kid look like she's smiling. It's very hard for me to see her pictures and read about her response to music and not be tempted to think of her as merely needing some help getting around. However, I think that this is because there is a sort of folk myth that says there's a hierarchy in which somebody who looks like he's smiling is also aware of himself as a human being and thinks and feels the same sorts of things that other human beings think and feel that cause them to smile, which conflicts with my understanding of what has happened to her brain.

I should clarify that my intention here is not to tell you or anybody else in this discussion what to think, and indeed if I am mistaken about any of the medical processes here I would appreciate a correction so that I can correct my thinking accordingly.
 
 
diz
18:42 / 30.01.07
I don't quite understand what you and diz mean by 'not fully human' -- I'm assuming you don't mean she's part mineral or something -- do you mean not sentient in the same way as people without encephalopathy?

Basically. When I say that "I don't think Ashley is a full human person," the key word for me is "person," and for me the concept of "personhood" bundles together sentience with the full package of legal, social, and moral rights and responsibilities we normally expect to grant a person. I don't think Ashley qualifies, because I don't think she's truly fully sentient. I don't think babies are either, but we sort of give them the personhood package (or, rather, we give it to their parents in trust) with the presumption that they will eventually be ready for them. Unfortunately, that doesn't seem to apply here.

It's very hard for me to see her pictures and read about her response to music and not be tempted to think of her as merely needing some help getting around. However, I think that this is because there is a sort of folk myth that says there's a hierarchy in which somebody who looks like he's smiling is also aware of himself as a human being and thinks and feels the same sorts of things that other human beings think and feel that cause them to smile, which conflicts with my understanding of what has happened to her brain.

That's not a folk myth so much as an evolutionary response. Human infants are incredibly dependent and fragile, moreso than virtually any other creature and for a much longer time. The chance of an individual baby surviving is in many ways directly proportional to the amount of attention and affection they are able to get, and thus the ability of parents to pass on their genes is directly proportional to how strongly they react to their baby's attempts to get attention. As a result, we are programmed to respond very strongly on an emotional level to babies and baby-like things, especially their emotional displays, and similarly babies are programmed to push those buttons by making the appropriate facial and sound cues, even though they are essentially without "content."

Babies make a face, we deal with the emotional response this prompts in us by hypothesizing about the baby's inner state, even though it's not really accurate.
 
 
*
05:15 / 31.01.07
I don't think Ashley qualifies, because I don't think she's truly fully sentient.

As a potential guideline for medical decisionmaking, I think this is horrifying. It's a statement of philosophy that one can entirely escape the consequences of, because one can redefine sentience however they like, so its presence or absence can never be proven or disproven. Some other people*, however, cannot avoid the consequences of this belief, because some of them lack the ability to dispute it in terms that most of the rest of society will recognize. They may even lack the ability to understand the premise of the question. To me this does not make them not sentient. Given that sentience, in all its many and varied definitions, is not objectively verifiable at this time, we're left with an unprovable belief and some ugly consequences if it is wrong. I have a hard time knowing what I ought to do with that.

I think there's something quite different between the Schiavo case, with medically established brain death and persistent vegetative state, and this case, where it seems doctors have been able to establish only that Ashley "functions on the same level as a 3 month old" (and what exactly that means is still unclear to me, as well as how they determine that).

for me the concept of "personhood" bundles together sentience with the full package of legal, social, and moral rights and responsibilities we normally expect to grant a person.

I can agree that some people with severe mental disabilities may not have the same responsibilities legally, socially, and morally as we have assigned to people who function the way we in our wisdom expect people to function. I can agree that without many of these responsibilities, certain of the rights may become inaccessible. This to me is not due to a lack of sentience, it's due to differing abilities of sentient beings to appreciate consequences and weigh possibilities.

*people here defined as "humans, regardless of perceived mental capacity or incapacity."
 
 
HCE
21:47 / 31.01.07
What makes this case difficult for me is that Ashley seems to me to be really testing my certainty about what is and is not a disability.

I don't think we can look at any one trait or behavior and declare a person disabled. If we have somebody like Terry Schiavo at one extreme, how close or far to Terry do we place Ashley? Where on the scale do we place various rights? The question of responsibilities is an interesting one. Who do we allow to vote, for example? I don't actually know what the rules are. If a person is blind, that's one kind of disability, and presumably there are some arrangements made that enable a blind person to vote. What about other kinds of disabilities? I have no idea, actually, how it works. Does anybody know?
 
 
calgodot
15:39 / 05.02.07
Who do we allow to vote, for example?

By law, accommodations must be made at the voting poll locations for the physically disabled, allowing them access to the voting mechanism while also providing the privacy due the voting booth.

In my experience (I've worked polls in a half-dozen states), most disabled people vote via absentee ballot, but some choose to go to the voting booth. They often bring a relative or assistant to help them. Generally, it is not lawful for anyone other than the voter and one election official (i.e. poll worker) to enter the voting booth together. The law may differ with each state; poll workers may be allowed to make the judgment call in some case. I've assisted blind people in voting, and have also stood by while they and their spouse or aide did the voting. There is the chance that the person assisting the disabled voter will commit fraud. But until 2000, I had never seen or heard of anyone trying to commit vote fraud in this manner. (In 2000 and 2004 there were a few reported cases of relatives and even healthcare workers attempting to dishonestly manipulate the votes of disabled, particularly vision-impaired, voters.)

With the mentally disabled, things are a bit tricky. Technically, in the US, you are pretty much born with the right to vote, though you are not eligible to exercise this right until you are 18 years old. Nothing can take away your right to vote (except, in some states, a felony conviction). Those whose mental disability is so severe as to require a caretaker still have the right to vote. Even those who are wards of their family or other caretakers have the right to vote. (I can't speak for certain, but Terry Schiavo probably still had a right to vote.)

There is no mental test or other "competence" requirement that a citizen must pass in order to vote. If you are a US citizen over 18 years of age, and not saddled with a prior felony conviction, you have the right to vote. If you are 25 but with the "mental age" of a 10 year old, you have the right to vote. I've helped severely mentally disabled citizens vote, which has led to some interesting situations and some really good stories.

There have been cases of voter fraud where absentee ballots sent to disabled citizens have been used by others, but as such occasions are relatively rare and minor there is no compelling need to withdraw the voting rights of the disabled in order to prevent further fraud.
 
 
Crestmere
07:38 / 28.02.07
See, I saw Josef Mengele type vibes when I first heard about this story. But the more I thought about it, the more of a gray area it really became. Sure the treatment is radical but I'm not entirely sure its all that horrible.

I honestly don't know.

But it seems like the kind of situation where its easy to criticize someone that isn't you. Who knows what a lot of us would do in this situation if we had a child that was that severely disabled and this option were presented to us.
 
 
Spaniel
09:13 / 02.03.07
Nolan, getting right back to brass tacks, and without wanting to push any particular line, just because someone feels compelled to act in a certain manner, and just because we may understand, empathise, or even agree with their compulsion, doesn't necessarily make the act itself acceptable, ethical or moral.
 
 
Crestmere
09:29 / 05.03.07
Boboss, I'm not so sure that I can understand or agree with them. I empathize with trying to do what is best for their daughter and this is the form its taken.

I hate to not take a stand for something like this but I have no idea what the right thing to do is. I'm not the parent of a child with the brain functions of a turnip so I really don't know what a drain it would be on my family. This wasn't a child that has severe brain damage from getting hit in the head with a rock so there weren't eleven years of bonding.

This sounds extreme but, honestly, I'm not so sure that the crazy thing isn't throwing your life away to take care of her. I mean this is the crazy old aunt where everyone wants her dead while she's alive and then they mourn her when she dies.

On the other hand, there are all the issues regarding the ethics around this. This does sound like something out of Auschwitz.

I probably have a little more understanding for the parents then a lot of people but I'm hardly in their camp. There are far too many things that make me uneasy. This is like something out of a really creepy science fiction story.

In terms of the thread summary question, this won't be Terri Schiavo. There isn't enough public press about this and, frankly, the Christian Right doesn't get pissed off over mistreatment of people who have already been conceived and born but who aren't quite ready to die.
 
 
Blake Head
16:59 / 06.03.07
Nolan, with the best will in the world, your empathy in this case would be better conveyed by language whose sensitivity excluded use of the phrase “brain functions of a turnip” and repeated indirect association between the parents and agents of Nazi Germany. Whatever your stance on the matter, this would be a good first step in addressing the particulars of the matter in hand and maintaining a moderate-to-high standard of Head Shop discussion.
 
 
Scarlett_156
01:19 / 15.03.07
This is one of those issues like abortion on demand, cloning, or stem cell research that people will argue and argue about-- and meanwhile there's no stopping it, it will continue regardless of what anyone thinks.

I would rather not sit in judgment against parents who are doing their best to take care of a sick child that will never get well, and I certainly can't presume to define the terms "humanity" "suffering" or "worth" to the unfortunate little girl-- who may not be all that unfortunate, since she has at least two parents who love her dearly, and a whole world full of people who are committed (in one way or another) to her cause.

Here are a few thoughts I have on the matter, take em or leave em:

* As a child I was subjected to all kinds of ridicule and cruel treatment from my peers, teachers at school (who meanly claimed they were "pushing me to do better"), and also my mom and dad. A lot of this was dehumanizing, I feel, to a very great degree. I forgive my parents and get along with them relatively well these days. I avoid encounters with my former peers. In all this time not a single person that I know of stood up for me or helped me at all. Eventually I just got over it, as do many people. If I had been disabled in some way, either physically or mentally, likely I would not have suffered so much-- and the first time this thought crossed my mind, as I recall, was when I was about seven or eight years old. No, I don't wish to be disabled today, and am glad I'm not-- but those were my thoughts when I was small and less capable of reasoning things through.

* When I was in my late teens/early twenties I was friends with a girl who was a couple of years younger than me, who had had a very troubled youth. She was a prostitute and a drug addict. Her sin was that she was very beautiful; she liked me because I treated her like my fellow human being, encouraged her to write and do other creative things, and I wasn't jealous of her because she was better looking than me. At the time I met her, she was living with a boyfriend who was abusive to her. She became pregnant; she was very excited, and wanted to have a baby. Her boyfriend treated her even worse, and after one particularly bad beating she knew she had to leave him. She couldn't move in with me because I lived right down the street from them; she was forced to move back in with her parents. She was six months pregnant at that point, and 17 years old. Her mother, who claimed to be religious, stipulated that she would have to abort her child in order to be allowed back in the family home. My friend was truly caught between a rock and a hard place, and so eventually allowed herself to be pressured into an abortion-- which nearly killed her. Her mother drove her to the doctor's office where this was performed and sat outside the door to make sure that she didn't escape. Later my friend told me with a mournful look on her face: "After he came out, I looked at him, and it was a boy..."

* A guy who was up until about a year ago one of my boyfriends had been raised by a mother who was one of those extremely unprincipled and weak individuals who make us all wish that there was such a thing as a "license to reproduce". She abandoned my friend and his two brothers and two sisters several times, leaving them with unhappy babysitters or family members while she took off partying; when she was around the household was chaotic, and eventually Social Services intervened. The kids all got sent to foster homes or group homes. I asked my friend which was more preferable, a foster home or a group home; his answer was "in a foster home you get beaten, in a group home you get raped"-- so the group home was better in the long run because you could manipulate those who had sexually abused you, and make them buy you off with presents and so on.

What these anecdotes have to do with the "pillow angel" issue: It's easy to get polarized by news items and stories of publicity. What's perhaps more difficult is to recognize the worth of ALL of one's fellow human and non-human creatures, and to extend if not kindness and support then at least tolerance toward them.
 
 
HCE
02:22 / 15.03.07
I don't see what those anecdotes have to do with being polarized by news items, much less with the topic of this thread. Your point is that we should all be kind to each other? Can you explain how that relates to Ashley? Would recognizing the worth of ALL human beings manifest itself as allowing the parents to give Ashley the suggested treatments, or preventing them from doing so?
 
 
Tuna Ghost: Pratt knot hero
05:05 / 15.03.07
Yes, please elaborate if you don't mind.
 
 
Disco is My Class War
14:08 / 15.03.07
It seems to me that those anecdotes actually have very little to do with the Ashley case.

But with elaboration, I may be proved wrong. Here's hoping.
 
 
Scarlett_156
05:24 / 16.03.07
They (my anecdotes) have everything to do with it.

Society at large has nothing to do with the eventual fate of Ashley-- her parents and doctors will decide that. Let's all wish them well.

You as an individual can decide how to treat other people who, regardless of how disabled or abled you may see them, may need your good will and tolerance.

And I know that you, a poster on this board, are not so disabled (whoops, I almost said "stupid") that you can't see that. Perhaps you are just so used to tricking people into saying the wrong things or being antagonistic/defensive by asking mock-stupid questions that it has become a habit that you can't break. I hope that's not the case.
 
 
ONLY NICE THINGS
06:12 / 16.03.07
Scarlett, if you find being asked questions this onerous, I very strongly suggest that you stay out of the Head Shop.
 
 
Disco is My Class War
11:45 / 16.03.07
tricking people into saying the wrong things

There's rarely need to trick people into saying the wrong things. They usually do it by themselves just fine.

Scarlett, I'm really interested now. I just don't know what your anecdotes have to do with the Ashley case. Is it that you think disabled folks should just be grateful for whatever love they receive from their carers, in whatever form, and be grateful that they aren't sent to group homes and pack raped? Or are you saying that Ashley's parents are similar a 'religious' mother who forces an abortion on her daughter?
 
 
Quantum
13:34 / 16.03.07
Eventually I just got over it,

Yeah, I'm getting that. You sound totally over it.

If I had been disabled in some way, either physically or mentally, likely I would not have suffered so much

I disagree, and I think your 8-year old self had little understanding of the difficulties of having a disability. Imagine having all that trauma you experienced *and* physical or mental impairment to boot.

I'm not sure what the stories of your tragically beautiful friend or your unlucky ex are about though. Were either of them disabled? Anyhow, as suggested above, if you find getting asked questions makes you defensive or aggressive then the Headshop is not the forum for you. The Conversation forum will suffer your anecdotes no questions asked, most likely.
 
 
Princess
14:03 / 16.03.07
Maybe the anecdotes, possibly not the views expressed with them.
 
 
alas
03:12 / 19.03.07
Patricia J. Williams is brilliant as ever on this topic. Here's her recent column from The Nation Magazine.

"diary of a mad law professor"--the monthly column by Patricia J. Williams in The Nation

"Judge Not?"

[from the March 26, 2007 issue]

For the last several months, I've been fretting about the policy implications of the case of Ashley, Seattle's so-called "pillow angel." Ashley is a 9-year-old child who was born with a debilitating disorder that caused her brain to stop developing at about the age of three months. She is sensate, she smiles, she seems at times to recognize her family members and to enjoy music. But she can barely move and will never learn to speak. When she was 6, Ashley's parents subjected her body to a series of interventions ostensibly designed to keep her small, easy to lift and thus less prone to bedsores and to render her permanently childlike.

To these ends, her breast buds were removed, in part because of a family history of breast cancer but, more immediately, to accommodate the harness straps that hold her upright. According to her parents' blog, "developed breasts...would only be a source of discomfort to her." Her appendix was removed because were she to get appendicitis it was feared she would not be able to communicate her distress. She was given sufficiently high doses of estrogen to insure that her growth plates would close, limiting her height. This, despite the fact that estrogen at such doses carries other risks, most significant an increase in the incidence of blood clots; but her parents felt that being able to easily lift her outweighed that possible detriment. Her uterus, too, was removed, to spare her the pain of menstrual cramps "or pregnancy in the event of rape."

I think this course was wrong for Ashley. Who of us, with full capacity to consent, would undergo the painful invasiveness of a full hysterectomy just to prevent cramps or as a prophylactic against rape's violations? Why then should it be permitted in the case of someone who has no capacity to protest? Even assuming a life at the hands of sexual predators were so predestined a fate, why not birth control pills?

This was also very wrong as a matter of ethics and public policy. There seems to be, in the national debate about this case, a popular consensus that the parents were well motivated, so who are the rest of us to judge? That sentiment is expressed loftily, as in Peter Singer's New York Times op-ed ("she is precious not so much for what she is, but because her parents and siblings love her and care about her"), and crudely, as in an anonymous online posting to the disability rights organization FRIDA ("I think your group is a pain in the neck...if and when something happens to the caregiver, who will take care of the disabled person...your group or the state who really does not give a hoot.")

I do not question either how much Ashley's parents love their daughter or how overwhelming their responsibilities must be. I do, however, fault the hospital establishment for allowing these surgeries to happen. In essence, the hospital allowed ethical questions about Ashley's long-term care and comfort to be privatized by deferring so unquestioningly to her parents' posited love. The hospital created an extreme presumption in favor of (often cash-strapped) caretakers that is heedless of medical necessity. Given a presumption premised on "love" rather than medical imperative, why not remove all her teeth to spare her the pain of cavities? Why not excise her fingernails to spare her the pain of accidentally scratching herself? Why not remove one of her healthy spare kidneys and donate it?--that might make her and the world a little lighter. If I'm not the one who loves her, who am I to judge? That facile shrug allows us to ignore that Ashley's body was not altered to correct any physical need of her own but to address tenuous suppositions about long-term social pressures: She'd be more included in family events, she'd be less attractive to rapists (if not child molesters), she'd be more portable for the convenience of caretakers. Real medical benefits, such as lessened risks of cancers or appendicitis, were entirely speculative.

The public discourse seems to sniff at regulatory oversight as some kind of invasion of privacy. But as medical ethicist Harriet Washington's new book, Medical Apartheid, points out, the very notion of privacy is inflected by the aesthetics of gender and race and class. Ashley is--and now always will be--"cute," "little" and "a white girl," as bloggers bluntly put it. This embodiment evokes a very particular social response. It is harder to imagine doctors so compliantly agreeing to castrate a boy, say, in order to allow his wheelchair seatbelt to fit better. Similarly, I wonder if a poor black child would have been so easily romanticized as a "pillow angel."

The glib libertarianism of "Who are you to judge?" masks not only these inequalities of social response but also our failure to grapple with the woeful state of a healthcare system that leaves all Americans, even middle-class families like Ashley's, so burdened. We are the wealthiest nation on earth, yet we cannot find the resources to provide the common medical devices that would have better enabled Ashley's family to care for her, unaltered, in their home: a simple hoist, mattresses that prevent bedsores, the assistance of home healthcare workers. Ashley's parents apparently felt driven to the lengths they went to because they did not wish to institutionalize her as she grew older, bigger, more cumbersome. They feared her institutionalization with good reason, that fear reflecting but a fraction of the anxiety generated by our public health crisis.

As I write, there are hearings in Congress about conditions at Walter Reed Army Medical Center--mice, mold, overcrowding and impenetrable bureaucratic ineptitude. It is, according to commentators, an issue that has "touched a public nerve." It's about time. As tragically high numbers of soldiers return from Iraq with shattered bodies and traumatized minds, the scandalous deficiencies of our public hospital system, and the scandalous costs of our private one, have never been clearer. Unlike Ashley, these men and women cannot be surgically miniaturized or pixied up with heavenly pet-name metaphors. They are full-grown, complex, their bodies heavy with sorrow, with need. Perhaps it is they who will provoke a collective re-examination--a call to judgment--of our polity's obligations to broader notions of human dignity.
 
 
Disco is My Class War
09:15 / 19.03.07
Thanks alas, Patricia Williams is certainly on the money.
 
  

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