I can’t get my head around this.
Essentially, Ashley X is a three-month old child mentally, despite her physical age of nine years, thanks to brain damage of some sort.
Her parents and the medical team at Seattle Children’s Hospital decided, when Ashley was six, to pursue a course of treatment to ensure that her body remained essentially childlike for the rest of her life. According to The Gaurdian this involved removing her “uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones”.
This was done for various reasons.
The parents insist that the treatment, carried out in 2004, was conceived for Ashley’s benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. “As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long,” they write.
As I’m sure regular readers are aware, I’m pro-choice and mostly pro-legal-euthanasia. But I’m also deeply and personally interested in the rights of disabled people, and this course of treatment deeply unsettles me. I don’t agree with the treatment, in short, but I have a hard time elaborating beyond my visceral reaction.
While I have nothing but utmost sympathy for Ashley’s parents and I understand completely their reasons, at the same time I find these medical treatments unnecessary and crossing a major line in the bodily integrity of the disabled person. I keep wondering — what if amputating her arms made her easier to care for? Would that be an acceptable way to reduce the burdens on this family? Would a medical ethics team agree to it? I don’t know, but I doubt it. Yet a hysterectomy is an acceptable treatment? As is stunting her growth via hormones?
Where’s the line here? What is acceptable treatment of the disabled, especially when they cannot give consent, and what is not? This treatment may well increase Ashley and her family’s quality of life. But at what cost? Clearly the family saw the benefits as far out-weighing the negatives. And I can’t even really articulate what the negatives are, apart from vague slippery slop assertions and again, my feeling that this unnecessary treatment violates the bodily integrity of the disabled person.
And as one of my LP comrades said in an email exchange earlier in the day, there’s something going on here about the dignity of women’s bodies as well, as this story in the Times makes very clear:
Because Ashley was expected to have a large chest size, her parents say that removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer.
They also feared that large breasts could put Ashley at risk of sexual assault.
A child’s body is so much more ‘appropriate’ for a disabled person. Disabled adults, especially fully-grown women with obvious ’sexual’ characteristics like breasts, are embarrassing, they are hard to deal with, their bodies trouble us. As children they are easier to cope with, not just physically, but mentally as well.
This is a hard issue. There is no cut and dried easy answer here, just a struggling family and their attempts to make their lives work. I am sure they feel they did the right thing for their daughter and their lives — and not out of selfishness, out of love. I don’t agree, but I wish the family all the best for Ashley and I hope the treatment does give them more time and resources to care for their daughter.
Elsewhere: Audrey has a different perspective.
A friend of mine who used to work in disability support told me that one of the hardest things for a lot of families of severely mentally impaired people to deal with was their teenage or adult children’s sexuality - ie things like they masturbated or exhibited “inappropriate behaviours”. She was firmly of the opinion that this part of her clients’ personality had to be treated with respect - they’re people not problems even if their behaviour can be problematic to others.
I wonder if this could be a factor in this decision.
I find it quite extraordinary, and scarily reminiscent of eugenics.
This is true. I wonder if it has something to do with bodily emissions. On a sexual level we associate liquid, goo, spit and so on with intercourse. On a non-sexual level, we associate these things with children. To look at a disabled child with no control over their bodily emissions is only to associate it with childhood and disability. To look at an adult doing the same is, to an extent, to make an unconcious connection with sexuality while making a concious connection with childhood (lack of functioning). I’m not at all drawing a pedophilic link here, moreso a link between the natural innappropriateness of sexual activity with the severely disabled and the unconcious sexual connection between the liquids that surround them. I haven’t thought further on this, but it seems to me an interesting connection.
I do support the parents’ actions because I think that there is a distinction between interefering with a reasonably functioning disabled person and a severely disabled one. To limit Ashley’s sexual development won’t impact upon her at all because, mentally, she’s a baby. As I understand it, there was great concern that experiencing the pains associated with menstrual cramps and puberty would distress Ashley beyond reasonable measure because she would have no ability to understand them. It’s not similar to amputating her arms for ease of care, because in the parents’ minds they are doing this for the comfort of Ashley.
I do, however, have to raise the point that if caring for the severely disabled is extreme enough to necessitate infantilising them forever to enable comfort for both the carer and disabled person then an obvious question must be discussed as to the benefit of continuing to care for them at all.
Please don’t misunderstand - I’m not talking about the mildly disabled, or those with cerebal palsy or those with Downs Syndrome. I mean the severely disabled people that need 24 hour supervision for basic functions and who lack the capacity to communicate with themselves let alone the world. It seems to me that quality of life and dignity are severely lacking in this equation.
It’s a tricky subject. I’m not a believer in eugenics or selective breeding. But I do tend to believe that if, as a carer, your life has been reduced to essentially ensuring the medical survival of another person, then this is no life at all.
I disagree with this, audrey. For a start, babies and children have sexuality - it doesn’t spring into being at the time of puberty, it doesn’t change. Who is to make the judgement about Ashley X’s emotional states? I’ll go back to what I was suggesting before - any human being requires respect for the totality of their personality, even if that requirement is sometimes difficult to meet.
I also disagree with this. That’s where the state should fund care in order to facilitate the carers’ own autonomy and enjoyment of life.
I’m very trouble by the idea of drawing lines between what is and isn’t a “severe (enough) disability” to warrant this highly intrusive surgical intervention.
But they’re not effectively castrating her, they’re just removing the ability to produce breasts, periods and puberty hormones. Surely this means she’ll retain any kind of sexuality that would be expressed in babies or children anyway?
I should have clarified that my last comment about carers’ lives should have included reference to the support systems in place for said carers. Clearly because most of the care is done by only a few immediate family members, it makes the situation different to if we had a proper system in place. I also see where you’re coming from with the thin end of the wedge style argument, but this has been used to criticise euthenasia and I believe it falls down there too; that being the question of where we draw the line when it comes to killing the elderly etc.
My first reaction was craaaaazzzyyyy. However, on further reflection I think that there is no problem here. Certainly there was transparency in the process.
The elderly take the other measures in extending and easing life. The girls family used the technology and medicine available to attempt to ease a life, not least of which was that of the carer.
I think I would do the same, maybe that says something about me.
Not to put too fine a point on it, I don’t see how anyone can purport to make a judgement in this case without immediate knowledge of the medical and familial facts, especially not on the basis of a report from a journal that is notorious both for its bias and its propensity for stage-managing its own stories.
Like others, my initial reaction was disbelief and not a small measure of disgust. However, after reading and watching several reports, I find myself with not a little sympathy for the situation the parents found themselves in.
A couple I used to know had a girl who was born with an incredibly rare chromosome disorder that meant she would never develop beyond the mentality of a 6-month-old. When I first met her, she was nine years old. She could just about sit up by herself, and was on the living room floor playing with some toys. She wore a nappy and T-shirt and looked very happy, her tongue lolling out in unselfconscious delight at the bright colours and clattering sounds.
Even at that young age, her parents were finding it very difficult to handle her. She couldn’t walk, not even really crawl. She needed 24/7 care to feed, clothe, carry, bathe and clean her. Even just changing a nappy was harder than it ever could be with a little baby - if she decided to kick or struggle or roll around, she had to be held down forceably. For her baby boomer parents, it was already physically and emotionally exhausting, and they weren’t getting any younger. The point at which their daughter would have to be sent away to a home was looming on the horizon even then.
So for Ashley’s parents to want to be with their child for as long as possible, to give as much love as possible, I can understand why they went to such drastic lengths. I also think they did not take anything of value from Ashley - any ‘adulthood’ would have been meaningless.
I too had the same aesthetic reaction, but decided on reflection that the parents probably made a reasonable choice. But even if they hadn’t we shouldn’t be too hard on them - “there but for the grace of god …”.
I’m with Peter Singer - very severely disabled babies who we are quite sure have no prospect of a conscious mental life should be allowed to die. What is valuable, sacred even, is human consciousness, not human flesh.
But they’re not effectively castrating her, they’re just removing the ability to produce breasts, periods and puberty hormones. Surely this means she’ll retain any kind of sexuality that would be expressed in babies or children anyway?
I don’t think that’s quite right, Audrey. According to this article:
Now, I’m not suggesting that people who have had hysterectomies no longer have a sexuality, but it will not be “expressed in babies”.
As Mark pointed out, there is a strong whiff of eugenics about this.
(On preview…)
But on re-reading your comments, I think you meant that she will “retain any kind of sexuality that would be expressed by babies or children anyway”. If so, then that’s kind of the point — her normal sexuality (whatever that might have been, given her condition) will not be able to develop. People’s concerns about the procedures stem from the fact that she will be artificially frozen as a “pillow angel” purely for the convenience of her parents.
And I think you’re wrong to suggest that we are talking about the “medical survival” of this girl, as if she was being kept alive by a life support machine. My (admittedly limited) reading on this case is that she has the mental capacity of a baby. That is clearly not the same thing as someone in, say, a persistent vegetative state.
Actually, now that I think about it more, I don’t think the sexuality aspect is such a big deal. She will apparently spend the rest of her life with the mental capacity of a 3yo, and without being able to move. So I don’t know that I’m too concerned by the treatment, except for the “ick” factor involved with making major long-term medical decisions on behalf of a young child who will never be able to make those decisions for themselves.
But it does raise “slippery slope” concerns.
(Of relevance…)
Oh, and while I’m hogging the thread, I’ll add that I think I got my back up initially because of the “pillow angel” nickname — it’s creepy, and it made it sound like a weird and selfish decision.
They obviously should have plugged her into a hyper-futuristic mechanised combat exoskeleton and sent her to Iraq. That’s ethical, right?
Oh, and here’s a piece from that horribly biased* journal, for Rob’s benefit.
* “Biased” because it reported on a public figure’s membership of a fascist party… whatever that has to do with Ashley’s treatment.
I don’t understand Rob’s point. Kate didn’t link to a report from the Brussels Journal, whatever that may be. I’ve never heard of it and could care less. I don’t think it has any pertinence to the issues under discussion.
Oh I see. It’s an attack on the Guardian for shock, horror, “depict(ing) the BNP members as negatively as possible”.
There’s an LP thread about the Guardian’s article. Let’s keep discussion of that there, please.
http://larvatusprodeo.net/2006/12/22/guardian-goes-under-cover-to-investigate-bnp/
The parents themselves and the doctors have spoken about the decision. Even if Rob has some belief that the Guardian is unreliable, that’s irrelevant to this thread, as obviously quite a number of sources have reported on the case of Ashley X.
Mark and Robert,
You are jumping in half-cocked. This child, Ashley, can’t move let alone masturbate.
The parents want to keep their daughter rather than put her in an institution. Manually moving a full grown adult is back destroying and now banned in most hospitals. The parents realise this means the standard of care they will be able to offer will diminish as they age.
Since the girl has a mental capacity of a three year old the results of the surgical procedures are immaterial to her. Or rather they are material in only one way: the fact that she will be of a lesser weight will reduce the aches and risk of bed sores that accompany immobility.
I see no grounds for to second guessing the parents, doctors and the ethics committee that approved the procedures.
I find it sad that people are so eager to condemn the parents and throw around unpleasant buzzwords like eugenics. How about showing a little empathy, guys?
I was reminded of a point I made to an earlier post by Kate that holding people publicly responsible for private choices was an essential ingredient of fascism (I said that, Kate didn’t — just to be clear). The Guardian’s campaign against Simone Clarke struck me in that light. This case did as well, so I drew a connection. Only the parents and their medical advisers are in a position to know what is really going on. Their judgment, their consciences. Journalists in search of sensation (and when are they not?) — piss off.
My bad.
Sorry, Mark, I missed that earlier post on the BNP undercover job.
It is quite an amazing story, isn’t it. Given the complexity of the situation I don’t think anyone here has particularly gone off half-cocked. I felt similar to Robert and Phil in that my initial reaction was strong but on reflection at least partly that was caused by the language used in the parents’ statement (which is a fairly amazing piece of writing, IMO, and a very interesting use of web 2.0 by a person who is the subject of a big news story to wrest back some control over how that story’s told.
The big question for me is unanswerable at the moment; I think it remains entirely to be seen whether this treatment is successful in giving Ashley and her family a more manageable and better life, and whether there are other health implications down the track for her. From this point of view she is basically being experimented on, as far as I can gather. The uterine and breast surgery are fairly standard procedures, aren’t they; but does anyone know anything about using hormones to slow or stop the growth of a normally developing person?
Laura, apparently hormone treatment of this kind has long been used: see the last section of the Guardian article Kate linked.
Anyone reading this, I mean - not “anyone at all”.
steve, I wasn’t suggesting she could. I was referring to a broader issue that Kate raised in her post about fear of the sexuality of disabled people and my friend’s experience in her occupation that this was in fact something that happened.
Rob, I’m afraid I can’t really follow the parallel.
Rob says:
“holding people publicly responsible for private choices was an essential ingredient of fascism …”
That’s just empty rhetoric. The treatment of the disabled is a legitimate topic of discussion.
I just happen to think it unfair that we condemn Ashley’s parents and not the parents who simply wack their disabled kid in an institution.
Very interesting article about past uses of estrogen to make tall girls shorter here: http://archpedi.ama-assn.org/cgi/content/full/160/10/1035?ijkey=f1da47bd9ee7f45b7c6035ec87299a272b4d074a#SEC5
Another part of this article says that this practice faded out partly thanks to the feminist movement, and partly because research suggested that estrogen therapy for height could lead to breast and uterine cancers in postmenopausal women, which throws another sidelight on Ashley’s treatments.
Personal tragedies, personal traumas, personal decisions. Debate them in the broad, sure (like abortion), but leave these poor fucking people alone.
Her mental age is 3 *months* old, people, not even 3 years old. 3 *months*. I can’t condemn the parents. They’ve done far, far more than what I would as a policymaker would have expected parents put in such a situation to do. I agree with derrida derider’s comment (and Peter Singer) which I see no one else has commented on.
Rob, they have been actively feeding the media. Here is the parents’ blog about Ashley’s procedures, which they are actively seeking to publicise for hte information of other people in the same situation: http://ashleytreatment.spaces.live.com/blog/
In the statement this explanation is given:
“We call it “Ashley Treatmentâ€? because:
1- As far as we know Ashley is the first child to receive this treatment,
2- We wanted a name that is easy to remember and search for,
3- The name applies to a collection of procedures that together have the purpose of improving Ashley’s quality of life and well-being. Growth attenuation is only one aspect of the treatment.”
But only because of the initial media firestorm, right? They are trying to defend themselves.
I think that’s part of it, yes. But not the whole story.
Laura says:
“…could lead to breast and uterine cancers in postmenopausal women, which throws another sidelight on Ashley’s treatments.”
I would think a (possible) statistically increased risk of developing cancer, given the gravity of her disabilities, is the least of her worries. Not that she can have such a worry, given her limited mental capacity.
In any event, I imagine outliving her parents and being dumped in an institution would be a curse rather than a blessing.
‘To abort or not to abort’ : when I asked myself this question some years ago my answer depended on whether the foetus I was carrying was or was likely to be moderately to severely disabled. I suspect the case of Ashley is somewhat sensational because there are so few Ashleys and most have been aborted before they got here.
In the case of a person profoundly disabled from birth and therefore dependent on particular others for survival and quality of life, I cannot agree that the event of being born affords ‘rights’ which prevail over any ‘rights’ of the birth parents.
I once supported a young woman (maybe 19) who had been revived from cot death as a baby. Unfortunately, the resultant brain damage from the lack of oxygen left her totally unable to function. As far as I could tell she was totally unaware of her environment.
Contrast that to a mildly intellectually disabled woman I also supported. She required some assistance with money, but was otherwise totally self-sufficient. Her parents confided in me that when she was a girl she had her appendix removed. Except it wasn’t just her appendix, it was also her womb. You see, they just didn’t want her to ‘get herself into trouble.’
It’s not purely defensive, Rob. The initial coverage was about the procedure (based on an article written by the family’s doctors in a medical journal), but the child or her family were not identified. The parents decided to name the child, in order to influence the debate.
Peter Singer has some interesting things to say about that.
Steve, I meant that the possible link between estrogen height therapy and breast & uterine cancer might have contributed to the pre-emptive removal of Ashley’s breast buds and uterus. Perhaps. Just thinking aloud.
Sorry, I was not trying to be provocative. It is a big issue and it has a lot to do with medical technology now being able to reverse decisions that in an earlier time were reserved for nature (or God, whatever).
I have dear friends who had a severely disabled baby who would have died at birth but for medical intervention; he was nursed through the critical phase, but could never have lived for long. His parents went through literal screaming hell for five years before he finally died of his ailments. The only point I’d really make is let’s not any of us who’ve not been there sit in judgement on those who have to go through these things and make such terrible and agonising decisions.
Rob, the parents themselves have been saying the decision wasn’t difficult for them.
“You see, they just didn’t want her to ‘get herself into trouble.’ ”
Probably very sensible, especially as the parents would most probably end up with the offspring of their daughter “getting into trouble”.
Good for them then if they could reach their decision with a clear conscience and professional and moral support.
Sorry again. No intention to derail the thread.
“medical technology now being able to reverse decisions that in an earlier time were reserved for nature (or God, whatever).”
Like very premature babies, another thorny issue.
One important point about the sexuality of people with social or behavioural disorders, and of people with a young mental age (this doesn’t apply to Ashley specifically, with a 3mo mental age, I am thinking more of teenagers and adults with the mental age of 3–8yo) is that its effects can include actual harm to others, rather than simply the embarrassment of seeing them being aroused or masturbating in an inappropriate place (well, perhaps some people would find that psychologically harmful, rather than moderately or intensely embarrassing, but I wouldn’t). I was sexually abused at age 7 by a fifteen year old who probably had a mental age roughly the same as mine at the time. I believe he was institutionalised afterwards — this wasn’t the first time he had abused a much younger child, but apparently his family had been trying to care for him and this event made them decide they couldn’t.
Others have noted that the weight and strength of such teenagers and adults can make them hard to care for (and potentially dangerous to their carers and others), so in some ways this is something of a variation on an existing point. But the existing discussion seemed to portray the sexuality of a disabled person as existing in something of a vacuum, consisting entirely of the person’s arousal and pleasure, and their carer’s embarrassment. It can involve a consensual partner as well, but it can also involve a victim. (Actually, in vastly more cases of abuse, the victimisation probably goes the other way around. But we fear for ourselves more than them. Ouch.)
I think politically I’m not much different from many commenters here: better funded care, rather than the denial of sexuality, is probably the best solution to this problem. This will, in some cases, involve paying carers to be the object of at least sexual attention on the part of those they care for.
On the question of letting severely disabled babies die: easy in theory, not so much in practice. Imagine: You have a baby, the doctors tell you that he’s expected to live for a couple of months at most. Might live longer but will be severely mentally disabled. Almost certainly, though not necessarily. But they can’t tell you much about it because no-one knows much and you know there are people who’ve lived till their 20s and 30s (at least) with this problem, and seem to have an OK life. You could probably ‘let the baby die’ in the first couple of days of life (when you’re completely distraught about the diagnosis and unable to actually think at all), by not helping the baby to feed, though since you’re in a hospital and don’t have an accurate diagnosis yet, it’s not that easy. After that, there might be other occasions to let the baby die or there might not.
That’s what it’s like, in the event that whatever it is is picked up early, which in this case it wasn’t, according to the parents’ weblog. There’s no certainty, you have no idea what’s going to happen in the short run, let alone the long run, and there’s no-one who does either. These parents and a whole lot more are facing an impossible situation as well as they know how. Whether, on the basis of the limited information you have about the circumstances here, you are personally creeped out by their decisions is completely bloody irrelevant.
Sorry, but this is a tad personal at the moment.
Tad, no very taddishly uncomfortable with an earlier remark that Audrey will not be able to express her sexuality because of the hysterectomy, in that she wont be bearing children. And the further implication that her expression of herself will be in some way compromised.
Two big problems with that - no woman is more or less lacking in sexual or personal expression by her status as a biological bearer of children or not. Audrey’s ability to express her ’self’ resides in the totality of her maturation of her intellectual, physical and consiousness of self. Not whether she would simply bear children. I know I’m overdrawing the point, but to focus only on the reproductive serves the mindset that females have some overriding biological destiny that must be expressed.
Secondly, the consequences of anyone this physically and intellectually disabled, falling pregnant are not in any manner positive. Audrey would have no ability to understand the experience, her immobility would surely compromise the foetus and her own health, and the child? A child (if born without her own set of medical problems) who postparnum by 13 weeks, would be already more maturated than her birth mother.
Yes we should as a society provide much better care to disbaled people than we do, but the stark reality is that most of it is still provided by families. Particularly anyone as disabled as Audrey. Her alternative to home care is a medical model, where the level of care that would be given to a say 65-80kg teenager or adult would, arguely be a far less quality of life than Audrey post-procedure will experience.
The best decision? The right decision? the ethical decision? But horribly the only logical decision. To call it eugenic misrepresents both eugenics and the reality that lead to the decision.
Katz wrote
Precocious puberty is an increasing problem in the western world, and much research has been undertaken to establish the causal and correlating factors. (its a facinating area - google if interested)
Eligard is one of the drugs frequently prescribed by Endocrinologists at the Royal Childrens Hosp in Bris to suppress hormones and prevent the premature (and consequently height stunting) fusing of growth plates in the bones in cases of precocious (premature) puberty. It is delived by monthly or quarterly injection.
YOu may not realise, but the earlier you start puberty , the shorter you will likely be, as the hormones produced by the process also fuses the growth plates between the bones and effectevely reduces the rate of possible growth. (Ever noticed those tall flat chested girls at school in late high school? They very probably hadn’t yet experienced menses, and the hormones hadn’t kicked in and fused those growth plates yet).
Precocious puberty can in some syndromes, appear in toddlers. No one denies that their are very real physiological and psychological problems faced by 5 year olds who have to manage periods, buy they also face compromised stature, which can also have significant implications in ther adult life.
I really empathise with the family, and think they made an extrememly difficult but wise choice motivated by love.
One of the reports suggested that the parents of Audrey X wanted a hysterectomy to guard against one of the consequences of sexual molestation. Bleak.
Would a male Audrey be castrated?
This decision of Audrey X’s parents seems to be quite consonant with the current social realities and the realities of institutionalisation of severely handicapped persons.
1. The supportive network of the extended family has dwindled away. Can the parents expect someone to look afer Audrey X after they cease to be able to do so?
2. Owing to effective medical care that prolongs morbidity, Audrey X can reasonably expect to outlive both her parents.
3. Audrey X’s parents are themselves subject to enormous emotional and physical pressures. They clearly want to look after AX for as long as they can before they die. A fully-grown woman is more difficult to tend than a child-sized person. It is therefore reasonable to predict that at some time in the nearer future a full-grown AX would have to be turned over to institutionalised care.
4. AX’s parents’ fears and concerns about AX’s fate in institutionalised care (see my first point above) are not unreasonable.
AX’s parents have made an informed choice in a very difficult situation.
Precocious puberty for those who want a more academic perspective
Precocious Puberty associated with Spina Bifida
a help sheet for parents
They probably would, but that wasn’t the point of my comment. It was to illustrate the ethics of performing a hysterectomy on someone without their knowledge and about informed consent. Audrey X, with an intellectual age of 3 months, would have no concept of what a hysterectomy is. Additionally, because of the severity of her disability, her parents no doubt hold a power of attorney.
The lady I made mention of was fully aware of what a hysterectomy is, and the consequences of having one - she just didn’t she had undergone the procedure. She also wasn’t the subject of any power of attorney or mental health order.
Just to clarify her name is Ashley X not Audrey (Audrey is a person who commented earlier in the thread.)
Alex said
Katz said
Audreys gonna get you bigtime ALex.
Quick, run!
The child will have a mental age of 3 months for the rest of her life. She’s a plant or a puppy at best. she’s never going to be capable of giving consent no longer how long you wait. The issue of consent for a procedure is a moot point.
No, she’s a human with a mental age of 3 months.
Just sayin.
Sorry to be contrary Jason
I just think it needs to be kept in mind that it is exactly because she is human, that its a vexed issue.
If she was a puupy or a plant, it wouldnt make for very interesting debate, or sell papers would it?
Alright, she has a *human* mental age of 3 months rather than a canine mental age of 3 months. Still the point is she’s going to be stuck in it forever and is therefore effectively going to be a ward of her parents for the rest of her life. We should be concerned that her parents as her wards do not treat her cruelly but usual notions of medical consent do not apply.
It may be natural for us, instinctively, as humans, to want to set a lower threshold (compared to other animals) for treating beings which happen to have human genes as if they had all the full sets of attributes we attribute to ourselves if they manifest some sentience, no matter how basic. That doesn’t mean it’s rational.
On postcript’s point, I was aware of that, and so was my friend who worked as a carer. I still maintain my opinion on the general issue, and agree with the sentiments expressed in postscript’s last para. A lot of unpleasant and difficult situations do arise with regard to severely disabled people, but I think that they need to be managed and dealt with, not the person altered. Obviously Ashley X is in a different category, but my initial comment went to whether there was some commonality with the fear of disabled people’s sexuality that I think is fairly common - as Kate was saying in the post. And I do see some overtones of eugenics in it. I’m not judgeing her parents, or seeking to second guess their decision, but I am also troubled by the assimilation of people with a disability to lifelong children or “pillow angels”.
Sublime Cowgirl, twice in this thread you’ve quoted comments I made and attributed them to Katz - it’s no biggie, but I’m freaking out slightly - is my name somehow showing up on your screen as Katz?
x x Laura
If only Ashley’s parents’ medical consultants had not let them down in scanning for this problem.
If ever there were a case for post-parum retrospective abortion, this would be it.
As Jason Soon says, it’s a “planty or puppy at best”.
When can we get some enlightened right to choose legislation in this country, so that parents don’t have to go through years of torment like Ashley X’s?
Oh my bad! somehow in my head i’ve morphed you two together. It must be something to do with the wonderful articulate feminist hive mind phenomenon that infects this place
xxx
Thanks for having a civil discussion, everyone.
I just want to say I see nothing that connects this with eugenics at all.
And to clarify, I don’t think her sexuality is actually being ‘repressed’ — she can’t move, speak, or arguably even ‘think’, let alone express sexual feelings or capacity of any kind. But her case does raise the wider issue of how the sexual development of disabled adults is treated across a whole spectrum of disability. Sexual development is not the same as sexuality, and I think this needs to be kept in mind.
Postscript, thank you for your comment, I am sorry for what happened to you.
My family had quite a lot of trouble with my brother around puberty, which I don’t want to discuss in too much detail, but it was very hard to make him understand the limits of appropriate behaviour. He was never abusive but he did go through a phase where he didn’t realise he was transgressing other people’s boundaries. Anyway, he does ‘get it’ now and that’s a very good thing, but many disabled adults don’t ever understand either their own sexual feelings or how to relate to others.
At one point it was suggested to my parents (this was when he was quite a young child, way before puberty) that they have him sterilised, tho not castrated, to make sure he never impregnated anyone. This comment (said in front of me, also a child) has stayed with me a long time and still makes me quite angry, again in ways I can’t articulate.
Anyone, I am still very troubled by this, and thought about it all night. But I want to make it clear I do not condemn the family for what they did, not at all.
Alex said:
Laura said:
sublime cowgirl said:
Audrey says:
I have to agree with derrida derider and jason soon here. If a person lacks the capacity for intellectual growth beyond a three month stage - if they can’t walk, talk, stand, sit or even raise their head - then to me they’re disability is so severe that they’re supported life is questionable. Sublime Cowgirl makes an excellent point when she says that the crux is her ‘humanity’ - we euthanase animals for extreme pain or similar circumstances and label it kindness. Why is it different for humans? I can’t help but consider it an enormous act of arrogance that we consider human life so precious that it can never, even in the cases of similar ‘kindness’, be taken away. Ashley’s parents will spend the rest of their lives looking after what is essentially just a living organism at the detriment of their own lives and that of their two other children’s. If we believe in dignity for the dying, we must also believe in dignity for the living. Ashley’s life is no life as we would wish it, nor are her parents.
Kaboom says:
Absolutely. I know it’s considered the ‘thin end of the wedge’, but surely there must be some kind of solution that considers the circumstance properly.
We say we value life but I don’t think we properly value it at all. There’s a great difference between valuing keeping people alive and valueing what we consider to be a life worth living.
In many ways, this calls to mind the case of Terri Schiavo. I believed firmly that she should have been allowed to die and I’m glad that her husband’s wishes were carried out. A life spent languising in a vegetative state is no life at all.
Earlier, Robert said:
Ashley X can’t swallow and has to be fed via a feeding tube. To me, this seems to be keeping her medically alive as an alternative to starvation.
And I still disagree regarding the eugenics. I think this is a world away from practising eugenics. Besides, I find it really difficult to equate the rights of ‘expression of personality’ within a vegetative child to those of her carers. If, given we live in a world where Ashley’s parents aren’t allowed to privately, quietly and compassionately let her go via a cocktail of drugs, then they have to be entitled to making the circumstances in which THEY can care for her as easy as possible for everyone concerned.
It’s an amazing story and one that seems like it could only come from our own time. Use state of the art medical procedures to ensure she stays in a child like easier to care for state? Sure, why not. Make sure there are appropriate places and people to care for her so as not to isolate her parents and leave them alone with this burden? Er……no, too expensive. Help her to die with dignity, sparing the parents years of this agony? Unthinkable! Morally reprehensible!
For the record, I support the parents, cautiously. I’m a parent myself, and there but for the grace of god and all that…….anyway, I don’t think it has much to do with fear of the sexuality of the disabled in this case, more fear of not being able to care for her and what happens then? My heart goes out to those people and any judging seems inappropriate. That poor girl is at the extreme end of disability, I believe it is al ot more difficult to secure a hysterectomy for more moderately disabled girls these days.
I’ve seen the care needed for such children and I support the parents. This is a dificult case but Majikthise has a good post (link below) that outlines some of reasons why this course of action is beneficial to Ashley X.
The references to eugenics are a little puzzling as well. This is a tragic exception and should be dealt on its own.
http://majikthise.typepad.com/majikthise_/2007/01/parents_stunt_g.html
Apologies for the name mix-up earlier. A wee senior’s moment. Seems that most agree its not appropriate to label this eugenic & that it should be treated strictly on its own particularities. BUT I do wonder about the parents reference to it as a new procedure offering a new set of procedures for dealing with children in this position. And as has been stated here, this is where it gets very very murky. As we haven’t resolved debates about euthanasia, we certainly haven’t even begun to have debates about intervening or boundaries for intervention in cases of severely disabled people.
As numerous people have said, sterilization is frequently? often? always? suggested to families with disabled kids. That is very close to eugenic social policy and there has been little or no debate, no ethical guidelines, and no indication that any one is particularly interested, other than advocacy groups for the disabled. As for the development of in-utero diagnosis of conditions - it is ’safer’/'easier’ to leave it as a family based medical model and keep the state and competing moral agendas out of it? To use the pro-choice model of a woman’s right to choose? And is this why it’s so morally loaded for some?
An interesting take at Pandagon:
Having been initially creeped out, I think I’ve now come down on the side of the procedure. If it makes her life easier and make the life of her carers easier, if she will never understand the procedure, nor what she’s lost, then I think that this could be an opportunity to do more for people like Ashley X.
I was discussing this with my mother last night and we agreed that, not so long ago, a situation like this would have involved the midwife taking the child away and telling the mother it had died in birth. At the time, that sort of action was considered acceptable (if unspoken of) because it was thought that the child would have no quality of life and would ultimately die anyway.
Now it’s considered Unthinkable! Morally reprehensible! because we live in the kind of world that considers the taking of human life for compassionate purposes is abhorrent while (and I’m not hijacking the thread AT ALL just making an observation) the sacrificing of human life for distant wars is ‘necessary’. All I’m saying is that I think our notion of the value of human life is skewed, and has gotten caught up in a complicated web of moralising and thin end of the wedge fears. I’m still not certain that it benefits a family to be focussed upon the complete care of one person, nor that it benefits the person in any discernable way to keep them alive in what is basically a non-existence.
Anna, that debate from Pandagon makes for a compelling argument while acknowledging the reality of Ashley’s mental condition. I think interfering with this procedure and allowing things to run their natural course on the basis of not inhibiting Ashley’s growth and personality indicates that there is hope for change in her condition. We know that that will never happen - as long as her mind remains frozen in time, why shouldn’t her body?
Audrey, what do you mean? The child appeared normal at birth. Her disability didn’t become apparent until much later.
I am also wondering why you don’t seem to appreciate that these parents love their child. Speaking of it being the best thing to let her die or whatever is missing the point, perhaps.
I was discussing this with a friend over dinner last night. She’s previously worked in the Department of Justice in Queensland on guardianship orders for children and adults without the capacity for decision making independently (which isn’t always because of disability - it can also be from illness - ie dementia).
We came up with three questions for those supporting the decision:
1. How exactly is “mental age” assessed when the person is not able to communicate verbally or move?
2. Why should the “do no harm” principle be disregarded? What risk assessments were made of the possible future consequences of this invasive surgery? And for that matter the fact that any major surgery carries with it a risk of death?
3. Given the parents’ arguments about pain and discomfort from menstruation and Ashley not being able to understand why these things are occurring, how is this weighed up against the no doubt greater post-operative pain Ashley X would suffer, particularly from the hysterectomy?
My friend told me about a woman who was living in a semi-supported environment and had frequent and heavy periods. She didn’t have the cognitive capacity to understand what was occurring. However a hysterectomy (at age 30) was the treatment of last resort after drug based attempts to meliorate her menstrual cycle and sedation during it had failed to have the impact desired.
In Australia under the Family Law Act the types of procedures which were applied to Ashley X would require approval from the Family Court. Here is a link to an article by, among others, Alistair Nicholson, then Chief Justice of the Family Court, discussing the legal and ethical issues that the Court confronts in considering such applications. http://www.austlii.org/au/journals/AJHR/1996/7.html
For me cases such as those of Ashley are heart-breakingly difficult.
Don’t get me wrong, I do appreciate that they love their child. That’s why I’m not suspicious of their decision to carry through with this procedure. I’m arguing though in broader terms of what this procedure means - ie, that if being able to properly care for a severely disabled child with love requires such a course of action, then what is the purpose of that care? Surely it becomes about making a person as comfortable as they can be until they die.
I have no doubt that Ashley’s parents would defend her right to life with all the strength they had, and I’m not suggesting that at this point she be euthanased. I just wonder at the current legislation not to mention moralising that denies any form of euthanasia in situations such as these (and to a lesser extent cases such as Terri Schiavo).
I’m also admittedly coming from a perspective that has had very little exposure to disability. I freely acknowledge that. It’s been interesting