Barbelith Underground > Head Shop > The 'Ashley Treatment'

There is a stunning lack of sympathy on display for parents who are attempting to address the needs of their severely disabled child. I think we can all agree that their methods are surprising, and very possibly badly misjudged or partially inspired by very dubious premises, but I’d suggest the level of debate in an emotive issue might be maintained by addressing the form of treatment in question, and refraining from couching discussion of it in terms of disgust and revulsion.

I think comments that focus on the smallest of supporting evidence for the alleged objectification of the child are premature. Of course it’s obvious. Of course it’s easy to assume that the parents have created attempted to create a monster and are themselves monstrous. “Pillow Angel Perverts” lends itself perfectly to the kind of reactionary tabloid headline view that is more willing to address the appearance of an issue than its substance.

If the reports are accurate, which as far as I can see is all we are all going on, “Ashley” has no or minimal possibilities of functioning in “normal society”, and has extremely limited mental and motor abilities, which (as far as current medical knowledge can predict) will leave her permanently in a state of dependence and unable to grant consent as an individual in any way. There are significant ways in which such a person must have their quality of life guarded by others, which will include actions taken without a consent they are unable to give: to expect otherwise is absurd. The fact that such a person is more likely to be treated as an object because of their incapacity to give consent means that accusations regarding the practice of objectification or bestialisation in order to undermine their status as individuals as modes of convenience or control are much more easily to hand, despite the fact that we assume a responsible person or persons must protect their quality of life whether they can give consent or no. If the elements of Ashley’s life that have been “removed”, were (again, in the best understanding of current medical knowledge) never going to be accessible to her, I would question in what sense she is harmed by their absence, particularly if it is true that there are substantial health and quality of life benefits to her by their removal (or rather the removal of specific biological disadvantages understood in the specific subjectivity of this case). I would also say that, as the parents are charged with her acting in her best interests, they would be being negligent if they did not consider courses of treatment that could improve her quality of life, even when that treatment presented them with a great deal of both personal and social pressure.

I think rather than focusing on the intentionality of the parents in this case, we should question whether the decision they made was in the best medical interests of their child, rather than cynically speculating on their supposedly deformed psychologies from our high status as Superior Moral Persons, and to question whether if in fact they were not responsible persons, why the medical establishment in question supported their treatment plans rather than dismissing them as medically unsound and/or unethical.

I think the first element of that, whether the medical treatment was sound, is likely to be contentious enough on its own without including the pop psychology, though possibly we could benefit from the opinion of anyone on the board with more experience of the medical establishment? I’ve already heard numerous reasons (off-board) why such a series of treatments were not necessarily uncomplicated or necessarily in the best interests of any patient, but I personally don’t feel qualified to make any assertion one way or another, and I’m curious as to how much other people are making judgements from a similar point of view of relative ignorance and to what degree sentiment rather than knowledge is informing their positions. Several different, less invasive courses of treatment have been suggested as alternatives, but again I don’t feel that I’m in a position to assess to their medical benefits in what is I understand quite a rare condition – one would assume that the parents also were not in a position to objectively assess different treatments, and should have been in receipt of appropriate professional counsel, although I think you could argue that they had a valid right to assess subjectively a course of treatment in terms of how they wished to include their child in their own life. The various surgeries combine to make a compelling picture of a child “denied” adulthood by freakish parents, but taken individually they appear to have tangible medical benefits, and the parents themselves do not characterise their primary motivation in terms of infant/adult but instead in improving the quality of life for their child.

As it stands, the parents specifically made the point that discomfort, even small discomfort, was especially distressing to Ashley, and as she is not in a position to relieve her own discomfort, they made decisions in order to minimise her future distress. They also made the point that her inclusion in the family unit, integral to their other main aim in keeping Ashley stimulated, would be maximised – not just made more convenient – if these treatment decisions were implemented. I have yet to see why either of these causes could be interpreted as seeking to lower her quality of life or subtract from her basic human rights.

There are three reasons given in the full blog why Ashley had surgery carried out on her breasts:
1) To prevent likely discomfort to Ashley,
2) To prevent future medical problems hereditary in the family
3) The prevent the situation where: Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.

The first two reasons, as presented by the family and as supported by their doctors, seem valid to me. I don’t know how I’d feel about making those decisions on the part of my child, but if I understood that the conditions of their illness meant that the course of action taken was in their best medical interest, I would feel it was my responsibility as a parent, rather than my legal right as a guardian, that would motivate consideration of such actions. The third reason, and the superficial infantilisation of Ashley generally, are obviously more problematic. I’m certain that the sexualisation of vulnerable individuals such as the severely disabled to their carers does happen, can happen, but I find it difficult to understand the medical justification for action on that basis, which appears paranoid in the extreme alongside the more justifiable expectation that she will suffer from medical problems as a result of non-action. At different points in the blog the parents mention several features of the treatment that they had not previously considered, but are now happy to add to the list of advantages, and whether or not that’s them being defensive under pressure, one would clearly have hoped that a greater level of discussion, and a much greater degree of certainty on the part of both the parents and those advising them. The fact that the mother in this case devised the treatment plan, rather than have it suggested by a health care professional, is what makes this appear so badly thought out, with various “selling points” being tacked on, suggesting, I agree, that the parents do have other considerations maybe not in addition to caring for their child, but influencing the way the understand what it is to care for their child in this situation. To be fair, they do themselves address the subjectivity of this treatment for other disabled children, and there’s no question that they are promoting its use for anything other than practical purposes and upon careful consideration of its merits. That understanding is likely something a lot of people will disagree with. Concepts of dignity, infantilisation, and further suppositions on the pathology of the parents may very well serve as criticisms of their own understanding of age, disability and individual rights, what I don’t see is how they help

I find the idea of an artificial, arrested childhood (or child-like adulthood) deeply disturbing, but I suspect that’s because I think I’m attributing an awareness on Ashley’s part of what adult/child means that simply isn’t there. I may find – or in this case suspect - that the intentions of the parents are disturbing, but isn’t that irrelevant if Ashley isn’t harmed by their actions, and when the unadorned medical action taken (we assume) does the opposite and benefits her quality of life? I know it’s difficult not to think of this in terms like “mutilation”, but I don’t know how terms like that can be helpful when the actions are neither done out of malice (ignorance, possibly) or restrict the subject’s participation in society. I suspect that if Ashley’s parents sincerely feel they have improved her quality of life, as was their stated intention, then they couldn’t care less whether someone disagrees with either their methods or their intentions. And I’ll quote:

“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.”

As xk says, the possibilities of future medical technologies would be a major, major argument against such extreme measures. However, I’d like to ask that if we’re so prepared to blame the parents for making the choice they did, which will directly influence the immediate present of their parenting, why aren’t we as vehement in criticism of the ethics board that agreed such treatment, who, presumably, had far greater understanding of what sort of medical advances might aid the child in the near future.

I think the crux of what I’m getting at here is: if a combination of sound medical advice and questionable intentions results in a higher quality of life for Ashley, does it essentially matter that the intentions muddied the process, if the result was beneficial? I think the more pressing questions here are whether the medical advice was indeed sound, and to what extent the interference with or persuasion of the medical position by the parents own wishes was taken – which would clearly be highly undesirable in any future cases, and if it has resulted in an overall limiting of Ashley’s future quality of life, it is a compromise on the part of those members of the medical ethics board which is utterly indefensible. I absolutely don’t think the process here (as reported) has been as transparent as it should be, and I have undeniable misgivings regarding the objectivity of the assessments made, both by the parents and by the medical authorities; all I’m attempting to do is suggest that we criticise the real rather than the illusory problems in this case.

To sensationally criticise not just the choice the parents made, but also to condemn them for the future care they are too lazy or too selfish to give, from a position completely independent from the responsibilities and expenditure of emotional and physical energy required to look after a severely disabled child, is a mark of the highest arrogance. Especially so when commenting on a journal where they repeatedly affirm both their love for the child and the fact that they are committed to caring for her no matter the difficulty. The journal need not necessarily be sincere, and I can’t see how we could prove it either way, but I really am shocked that Barbelith’s first reaction is to criticise it’s inconsistencies in order to discredit the stated unconditional love for a child in what I can only imagine are very difficult circumstances – and I didn’t at all perceive that the realities of the trials of raising a disabled child were in this case transformed into a rejection of that individual as a full human being (quite the opposite) except to bolster the arguments of those who accuse the parents of such. I’m not trying to defend the parents’ statements unreservedly, speaking on a personal level, I find statements like “We’re often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit.” difficult to connect with, I might even go so far as to think them repulsively twee, but I wouldn’t attempt to use that lack of understanding on my part to question how genuine their expression of paternal love was because of the form it had taken.

Just to make it clear, I think there are serious issues in this case that can and should be discussed. My initial reaction to the news article was probably similar to those above, but on further reading I was left with a more conflicted view of the events. I think I’ll make the point now that it could be revealed that Ashley’s parents are indeed monstrous, that I have spectacularly failed to read between the lines of their statement, and if that does prove to be the case I would be just as angry as I was initially, and I’ll apologise to you all for spending so many words in their defence worthlessly. But until the evidence for that becomes clearer, I don’t think that just because a practice is unusual or appears to disturb the individual values that we all support that we should immediately and superficially condemn it, and I find the conservatism on display above disquieting. I think criticising the actions of the parents because of their appearance or their symbolic value to schools of critical theory should not fail to address both the facts of the situation and their importance as facts which relate to living individuals, not as embodiments of abstract theory. The previous statement, should not, I hope, invalidate criticism of the potential consequences for Ashley in this case. I can sincerely only hope that the repercussions for the child, and the precedent it sets, are not as bad as is currently feared.

I’ve just spoken to my cousin, who has spent nearly half her life in a state of disability so severe that many people wouldn’t consider her quality of life to be worthwhile at all, and who is a leading disability rights campaigner in her country. She’s closer to the inside of this sort of situation than anyone I’ve ever met. She says she’s not read up on this properly yet, but that it sounds fairly insane, and when I told her some of the parents’ weirder statements, such as their presupposition that their daughter would be at high risk for rape, she said that they need therapy. For my own part, I’m certainly engaging with this topic both as a disabled person and as a woman. Overall I disapprove of the action taken from the reports I've seen of it, but I agree with Blake Head that discussion of the individual issues concerned is more useful than a gut reaction of "ick, barbaric".

There are a number of issues which worry me, both sociological and medical. Several of the sociological ones have been covered – that the child is repeatedly referred to as a “Pillow Angel”, for instance, and I notice from the parents’ blog that they are hoping that they have now set a precedent for this treatment to be applied to many other “Pillow Angels”. This does alarm me, and I think my current list of priorities for this situation is 1) the health, comfort and happiness of Ashley; 2) enabling her caregivers to look after her as best they can (primarily a social problem); 3) the repercussions on society of normalising this sort of treatment for severely disabled children.

How far do I trust parents and doctors to make this sort of decision? Not that far. It’s still the norm to carry out surgical procedures on intersex newborns which can completely wreck their lives, out of a desire to make them “normal” by fitting into one gender or the other, and I’ve seen enough medical fuck-ups in general not to regard the medical profession as a group of deities. (With all due respect to them, of course. No one’s infallible, and they have hard jobs to do.) I’ve never assumed that parents are automatically the best judge of what is best for their children, and this pair seems fairly odd (again, with all due respect for the monstrously difficult situation they are in). They appear unhealthily obsessed with wanting to keep her a little girl, if not a toy. There are plenty of pretty pictures of the child online, the sort where you squint and wonder whether they’ve put mascara onto her, but the family’s name is kept out of the press. There are some strange discrepancies in their tale, though I’m not so sure about the one where she recognises types of music but not necessarily her parents, she could just have better auditory than visual function or have problems with sensory overload. Their attitude towards caregivers is peculiar and not properly explained. I know full well how difficult it is to get suitable caregivers, but it’s definitely possible, and the assumption that caregivers will sexually assault the child is deeply disturbing – nor is sterilisation of the child the answer. (Did the parents watch, and freak out about, Almodovar’s Talk to Her, in which – SPOILERS – a young woman in a coma is raped by a nurse who thinks he’s in love with her, and carries the resultant child to term while still in a coma?) If the parents are determined never to let a caregiver near their child, their rationale for keeping her at a weight they will still be able to lift when elderly, then the problem should never arise, though I’d like to know who is going to look after her when they die. It would clearly be in the whole family’s interests, however, to find suitable caregivers to supplement the parents. If there are financial problems with hiring caregivers (does anyone know whether the treatment this child has undergone will have been costly to the parents?), there are usually better ways around that than preventative and highly invasive surgery on the child. If she currently fits best into two baby strollers rather than a wheelchair, get a special reclining wheelchair built. People around the world manage to cope with taking disabled adults out for events, it’s not necessary to stunt the child’s growth to do so. It’s difficult anyway, the size of the person isn’t the main issue, though I will admit there have been times when I’ve been out in a wheelchair and been grateful that I use a small one due to narrow spaces.

As for the child’s comfort and health, there is more to treatment this major and invasive than the month’s recuperation they describe on their blog. Do any medics here know how much is actually known for certain about the long-term effects of such treatment? I’ve certainly heard that medically interfering with children’s growth is quite a dodgy job and avoided unless completely necessary. I can’t speak for stopping puberty, though I’d be highly wary of that. Artificial amenorrhoea, for instance stopping menstruation through anorexia or through hormonal treatment such as the long-term contraceptive Depo Provera, increases the risk of early-onset osteoporosis. Hysterectomy is major surgery, not undertaken in adults without a damn good reason, and it doesn’t actually solve all hormonal problems (according to the gynaecologist Katharina Dalton, when performed for severe PMS there’s a brief improvement of symptoms, followed by resumption and worsening of the symptoms). Not even oophorectomy (removal of the ovaries i.e. castration) does, since the hormonal messages originate in the pituitary gland and are not cancelled by removal of the reproductive organs. A quick look at Wikipedia for both procedures reveals a number of serious risks for both. I suspect this child will be on HRT and could end up with a very messed up system. And I have no idea what removal of the breast buds could cause. The only case I’ve personally heard of regarding pre-emptive mastectomy, leaving aside gender reassignment, was in a family where they had such a virulent and nasty breast cancer gene that the women all underwent early double mastectomy, otherwise they died young from cancer. That’s a good reason.

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. Secondly, when it does it’s generally treatable, by far less invasive means at that, and medicine is improving all the time. I’ve got larger than average breasts and they don’t cause discomfort when I’m lying down (any strain on my back is when I’m upright); a friend with slightly larger breasts says hers occasionally do, but again this is rare. I really doubt that a chest harness would be as problematic as they describe, it sounds more like they don’t want to touch their daughter’s breasts by accident. Heaven help us if doctors and nurses decided that they didn’t want to touch any part of the body which could be perceived as sexual! Dealing with periods in terms of blood flow is not going to be more trouble than dealing with Ashley’s excretory functions, which she presumably can’t do herself. When Blake Head told me about this yesterday, at first I thought he was referring to one of those controversial cases of mentally disabled adults who are capable of engaging in consensual sexual activity but cannot handle contraception and would not be able to handle childrearing, and who are sometimes therefore given long-term contraception such as a progestogen implant so that they can’t get themselves pregnant. Such forms of contraception also tend to stop menstruation and menstrual problems, so they may be useful in this case: not perfect, there are potential side-effects, but my point is that there are methods of making the menstrual cycle less obtrusive, should it be a problem in the first place, which are shorter-term and far less invasive than surgery. Incidentally, this post is pretty much the discussion Blake Head mentioned, though he turned a bit green about the gills when I started talking about forced sterilisation and IUD insertion in developing countries and begged to be allowed to do the washing-up in peace. I’d actually be quite interested in discussing that latter subject, along with musings on pre-emptive ways of dealing with high rates of unintended pregnancy, any takers?