"The parents of a severely disabled young girl have turned to the internet to defend their decision to approve growth-stunting medical treatments that will ensure she has a child's body for the rest of her life." (The Age, 5/1/7)
According to this article, Ashley X is a nine year old girl with the mentality of a three month old baby. She cannot walk, talk, stand or even sit. It's unsure whether or not she recognises her parents (although they like to think she does). Ashley's parents have pioneered a new kind of treatment which involves medically infantilising her body to avoid puberty and adult development.
Of course there are the expected nay sayers who've condemned the parents for intering with 'god's great plan' or some such rubbish. Frankly, I find it difficult to understand how one could possible disagree with this kind of treament given the overwhelming financial and physical burden that caring for a disabled family member entails. I gather that some of the criticism they've received has accused them of behaving selfishly to lessen their burden; that they are 'using eugenics' to aid themselves. The parents have taken pains to point out that the treatment was undertaken for the comfort of Ashley and not for their own convenience.
However, I'd like to know exactly why it would be offensive if the primary motivation in this case *was* the convenience of the parents. Mentally speaking, Ashley will never graduated beyond a three month old baby. In fact, one might argue in a utilitarian sense that she is less than a three month old because she lacks the capacity for growth and learning. I realise this is a delicate point, but I have to ask what purpose it serves to enable life to continue for a body that has no chance of mental development, but that will (according to her medical team) face no medical obstacles to living a long and physically healthy life.
I don't advocate selective breeding or eugenics. I don't believe that people with disabilities should be taken outside of the villages and left in the snow. But at what point does it become less 'helpful' to keep a person alive that cannot, in terms of how we understood human beings as being intellectual creatures with the capacity for thought and action, function as such?
Consider this excerpt from her parents blog, The Ashley Treatment:
"Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."
Is the drive to save human life at all costs greater here than the utilitarian approach? How do people feel about the concept of letting someone go to enable a better life for the family involved?
Consider this comment on The Ashley Treatment:
“50+ yrs ago, my sister was forceps born with her brain damaged and with a mind stopped at an older infant stage child. She grew to a woman far bigger, stronger and heavier than most of the rest of us. And into monthly periods that terrified her. I wonder if this technique might have helped our family? Back then you locked such people away in attics or "homes" because only the more affluent could get outside help. Sister was kept with us and we all loved her during the decades until her untimely death. Would it have been so terrible to lighten all our burden, including hers? I just don't know.”
Clearly, Ashley's parents feel like they are blessed to have her. I'm sure many people who care for severely disabled children feel love for them. But is there a point when the emotional cost of caring for the severely disabled becomes too great?
Peace out (even to the Pillow Angels)
Friday, January 05, 2007
Pillow Angels
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22 apples:
It's interesting how you'll get all these people whinging about 'God's plan' but they're usually totally against the provision of a working social support network. If they really gave a shit about this stuff they'd be paying for 24 hour carers and relief services. It's the same with the Christian right wing objection to abortion. If they actually wanted to lessen the number of abortions they wouldn't object to functional sex ed in schools or making childcare accessible and affordable.
I don't agree with what her parents did. I empathise with them, and I know having a severely disabled daughter is very tough on them, and I am sure they feel they made the 'right call' for them -- but I don't like their decision. It isn't because of eugenics, but because I feel there is a line they have crossed in regards to the bodily integrity of their daughter by giving her non-essential medical treatments of this kind.
For instance, if they said that amputating their daughter's arms would make her easier to care for as well, would we all agree to that? She'd certainly be smaller and easier to manage and it would reduce the parts of her body which could get bedsores and so on. Yet it's different when they give her a hysterectomy and limit her growth?
I'm not religious and I am pro-choice and pro-legal-euthanasia. However, I just can't sit here and say I agree with what they did. Even though I am sure they did it for all the right reasons.
Full disclosure: it reminds me of people telling my parents that my disabled brother should be sterilised to make sure he'd never inadvertantly father a child he couldn't care for. It wasn't that they were worried about him passing on his autistic bloodlines or anything, it's that it was 'unseemly' for him to go through puberty and have any sort of sexual inclinations.
Disabled adults seem to be very very distressing to people, in a way that disabled children are not. Disabled kids are often 'cute' but once you've got a fully-grown adult needing to wear nappies all of a sudden people's sympathy seems to evaporate.
Sorry, this is a mish-mash of a comment, but I really found this story immensely distressing. But I did want to point out that not everyone who doesn't like what Ashley's parents did is motivated by conservative religious views.
ianto - I agree. I once saw the most distressing episode of "Four Corners" that highlighted Australia's shocking support system for carers. The two situations operate entirely separately that it's little wonder people would go to extreme measures to ease the 'burden'.
kate - I want you to know I thought of you when I posted this. I was concerned you'd take it the wrong way, because I certainly don't want you to think I'm advocating for people like your brother to be...taken care of (that sounds so ominous but I didn't know how else to write it.)
Obviously I read the original article from the perspective of someone who's never had to deal with disability. It's interesting to get your take on it. On the other hand, it does seem that having the body of a woman with the mind of a child would be extremely distressing for both parties. I don't agree with sterilisation of the mentally disabled because the idea of it makes me uncomfortable. I do think though that the practice of it and other methods to 'control' this section of the population is indicative of the relatively recent act of keeping the disabled alive (as opposed to being 'quietly taken from the mother and pretending it had died in birth') and not knowing exactly how to properly support them within the whole of society.
I also think there are degrees - some people care for more than one disabled child in single parent families while others have the support of a wide network. Does there come a point (and Kate, I really, really hope you aren't offended by this because I have the utmost respect for you) when the sacrifices made to care for the disabled lessen the value of your own standard of living to the extent that three people, rather than two, are only just functioning?
I'm not offended by this discussion, and I certainly wouldn't want my views to be taken as 'gospel for all people who have family members who are disabled'. My brother is very high functioning and so I can really only imagine and empathise as best I can the difficulty in caring, full-time, for a person who will never walk, never talk, never laugh. It is different for different people with different disabilities and their families as well.
And of course I think the care for disabled people is a huge issue everywhere in the world. There just isn't the money in most families to do it any other way but with extreme difficulty. And public health care systems do not provide adequate care. So it's incredibly difficult, and I agree with ianto ware about the hypocrisy of many on the religious right esp. when it comes to health care.
And I have seen first hand exactly what even dealing with a relatively mild disability can do for parents, their relationship, and not to mention siblings. So again, I have nothing by sympathy for Ashley's family and I understand their decision was made under these circumstances.
But I still don't agree with their decision. I'm not going to villify them for it, but as I said, I think it crosses a line and it makes me hugely uncomfortable.
In the end, Ashley's family made a choice and I hope it is the best one for her and her family. But I also hope it's not a choice many other people in their position make.
I think this is a really hard call. I know heaps of parents who really struggle with raising children with disabilities.
What I find offensive is the implication by some that any underlying motivation regarding the actions taken by parents has to be devoid of love or compassion, and all about the selfishness of parents.
On a slightly different note, as a parent myself (and at times, a pretty annoying offspring to my own parents) I know that there are times when even the healthiest, most lovable kids drive you nuts.
If you want to add to that the exhaustion of caring 24 hours a day for some one who needs your help to do everything (and here I include not just children but also ageing relatives) then it's not surprising that frustration bubbles over. Which again, is not what I'm suggesting is the motivation here, but I think people's constant banging on about how "brave" people are puts an unrealistic expectation on them to behave in a way that is nothing short of angelic, while undergoing some really serious trauma and stress in their own lives.
Who cares for the carers, indeed.
It seems to me that this child is loved by parents who wish to be able to include her in their family life. If she matured into a woman physically, while remaining with the abilities and needs of an infant, then they may no longer have been able to do so. I think the medical procedures that were undertaken to allow her to remain with a loving family are justified. But what a heartbreaking decision for them to make.
As far as utilitarianism, in many ways I admire this philosophy. But I don't think I could sacrifice one individual in order to increase the quality of life experienced by two or more others. I've never been faced with such a choice, and for that I am very grateful.
Kate - This is part of what I posted to you over at LP I'm reproducing it here for the benefit of context and for others.
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.
gigglewick - Yeah, I think this is at the crux of this debate. Who does care for the carers? Until there's a greater support system for these people, it's impossible not to consider the worth of effort required to sustain many severely disabled people - not to mention the impact on other family members ie children who never feel they have their parents' attention because it is focussed solely on the more needy of the family.
Oh, how terribly sad. Ashley will never know just how much her parents love her and want to keep her with them. I can't even imagine how heart-breaking it must be to have a child who will never develop past a mental age of three months. The poor parents. Whatever they do for her is so much more compassionate than putting her in a home.
It is hard for me to comment on this because I have never been in the situation, nor do I know how I would react if I was. However if it meant the difference between allowing the child to stay with their family instead of going into care then I think the parents did not only what they thought was best for them but what was best for the child.
I am sure her parents thought long and hard about the decision before making it. I guess I do not feel it is the right of others to critizise them because they have technically done no harm to their daughter. All they have done is care for her the best way they know how.
meva - In many ways, it's like choosing whether or not to carry through a pregnancy. People can wax lyrical all they like about stances, but until you experience living with disability in the family, it's difficult to make a judgement. Having said that, my intellectual philosophy is one along the lines of Peter Singer - human 'life' equals the ability to develop conciousness. Personally, I feel if a body is just functioning with the capacity for intellectual growth or reasoning, then it is basically a shell. I understand this isn't a popular opinion, but it mainly stems from feeling that I would hate to be living that kind of existance - not to mention that I know I would (perhaps selfisly) resent having to care for one like that. Again, I clarify that I'm referring only to severe disabilities; ones where thought processes and actions are basically null and void. But yes, it would be a terrible situation to be in.
redcap and lulu - I'll address you both because your points are similar. I agree with you. The parents have done the only thing they feel is best for their daughter. I'd go further though to suggest that in this case 'Ashley' doens't really exist as a person, but as a living organism that is trapped in a permant state of infancy. For me, the greatest pain I feel is that the parents should be able to say goodbye to their daughter because she clearly is never going to develop mentally. Of course, in our society they aren't able to do this, even if they wanted to (which I doubt they would ever admit to counciously). For me, it comes down to the fact that I consider it kinder to let people go rather than continue a farce of a life that will have an intense ripple effect on all those around them. We put down animals similar things and claim it is 'the kindest thing' - what makes us so arrogant as humans that we consider such actions insulting to the notion of 'life'?
I was a little taken aback when I first read this article but on reflection I think the parents have been brave and foward thinking.
If Ashley grew as a normal human would,at some time in the future she may have had to go to a nursing home -either for respite or permanately.Not many nursing homes cater for people under 50,the system is open to abuse in many ways,residents become faceless numbers,the list goes on.
Not only are they removing the stress of menstration but also the,God forbid,possiblity she could be impregnated and having to deal with the extreme stress of either a pregnacy and birth or an abortion.
There are bugger all systems in place for us carers,which is a slap in the face considering the millions of $ we save many different Govts around the world and the hard,sometimes heart breaking,work we family carers cope with on a daily basis.
I'm sure Ashley's parents thought long and hard about both their daughter's quality of life and their ability to continue to give her that quality,for as long as she is with them.
I don't think this course of action is for every disabled child but if this decision has no harmful impact on Ashley's existence now or in the future,then I wish her parents well.
bugs "Not many nursing homes cater for people under 50,the system is open to abuse in many ways,residents become faceless numbers,the list goes on."
And this is the great problem with the system - that we have a number of people to care for, but no actual support for the system of support. There has to be a better way, and I for one think it lies in the direction of considering the 'kindest' course of action...
I've worked extensively with people who've suffered various forms of profound brain injury. Sending these human beings to 'institutions' is really a thing of the past. Following the passing of the Disability Services Act, you'll find that they are living in group house situations. The United States has similar legislation.
Ashley would have every opportunity to live in her own home supported by carers 24 hours a day. It's really her parent’s choice to keep her at home.
Over 6,500 young people are in aged care facilities across Australia,due to the lack of suitable or available accommodation.
http://www.ypinh.org.au/
That's a shocking statistic, Bugs.
The thing that bugs me is...
Doctors are so often wrong. I've worked with and been around people with many different disabilities. One girl in particular who has severe brain damage and was never supposed to be able to speak, or even walk, yet now can do both, and even has a part time job is just one tiny example of nature defying science.
What if Ashley might have defied the odds? What if she ended up able to communicate? to walk? to interact?
What if she couldn't do any of those things, but she grew able to understand the world around her?
She'll spend her entire life seeing the world from a baby's point of view. What about the quality of life she could possibly have grown into, given the chance, even if it was only inside her own head?
The choice her parents made seems well intentioned enough, but what if limiting Ashley physically has limited her mentally as well?
Nobody will ever know.
What I do know is that physically modifying somebody to make caring for them easier is wrong, no matter what the circumstance.
Let me offer a question similar to one already asked:
If your child was born a quadriplegic, would you have their arms and legs removed to make it easier to care for them? They would never have use of them anyway, and surely a torso with just a head is much simpler to maneuver in and out of bed. Easier to bathe. Lighter to carry.
Of course you wouldn't.
I don't blame her parents, but I hope to God (or the higher power of your choice) that karma takes care of the doctor(s) involved in Ashley's "modification".
One of my mothers best friends is raising an autistic daughter that is also handicapped physically.
Having seen what they go through on a daily basis with Breanna, I would not judge ANY parent for taking whatever steps they deem necessary to enable their child to have a decent quality of life, and also do whatever they need to, to enable them to provide a good quality of life, both for her, and for themselves and her other carers.
I guess it's a case of judge not, unless you've walked in their shoes and faced the challenges and hardships they face every single day.
Alex - On a side note, isn't there a huge problem at the moment for young people requiring care? Aren't they being placed in facilities that cater mostly for old people? This is just one sign it seems that our care system is basically up shit creek.
bugs and alex - Again, up shit creek.
byron - I think one of the most natural human inclinations would be to hope that the doctors were wrong, and to hold on as long as possible waiting for that event. For some extremely blessed people it turns out that waiting was the right choice. For others, it can be more painful to wait and wait when, sadly, the doctors were right. Consider the cases of people like Terri Schiavo and that dude in Adelaide last year whose brother was fighting the mother to keep him alive (he was braindead after a motorcycle accident). In both cases the family involved believed that they must be kept alive because there *could* be a change in the situation. Could this not be argued to be painfully holding on? Living in limbo with that person, against all odds? It's fine if it sincerely only affects the one choosing to believe - it's their life and all - but that's never the case. Sometimes unwavering faith in hopeless cases can be damaging to many people. Letting people go isn't just about helping them move on, but about allowing their family and carers to move on also.
Even if someone like Schiavo had defied doctors and revealed a glimmer of personality within, she would still be trapped in a vegetative physical state. That's not the kind of life I would choose to lead, nor would I wish the care of me onto people I loved.
You might be interested in this argument from Pantagon:
"In terms of disability rights activism, the compelling case for it is the idea that having a disability doesn’t mean that your life isn’t worth living and therefore you should be accomodated and given as many opportunities as anyone else for the joys of life that other people who are considered more able-bodied have. With that in mind, I think it’s quite possible the parents of this girl are living up to that standard, if in a way that’s startlingly out of the norm. They’ve identified their daughter’s needs and pleasures—basically, those of an infant—and are looking for ways to fight social structures and even biology that would erode their daughter’s ability to have those things. It’s weird, but it makes sense. From that perspective, they are taking activism into a new dimension, seeking not a cure, but a radical rethinking of how far we’re willing to go to accomodate the disabled as they are. I might be wrong, but it’s worth considering it from that angle."
Steph - Hey girl x Absolutely agreed.
Let's pose this question - can any of you afford to have mechanical overhead lifts installed in the ceilings of every room of your home ?
Or doorways widened,showers modified,ramps installed,etc?
How about paying for AU$450,000+ entry fee into a care facility(most likely aged) that MIGHT have a vacancy?
Can you lift,transfer or basically roll a 100+kgs person every 2 hours overnight,while tending to their hygiene(changing the sheets,underwear,clothing without lifting the person from the bed) ?
How about transferring that same person in and out of bed every day ?
And feed them,change their nappies,change their clothing,shower them,move their position every 2 hours or less,apply ointments every 1 hour,massage their extremities(feet and hands) every 4 hours,perform physio every 3 hours,give medication,empty cathetar or colostomy bags(wee and poo respectively)every 2 hours....
THAT is what is involved in caring for a totally incapacited person in your own home.
Your daily life revolves around the needs of the patient,without end.
THAT is what Ashleys' parents were faced with,everyday,without the surgery.
Until you're prepared to do the hard yards without a weekly paycheck and time out,you cannot comprehend the magnitude of their struggle.
bugs - I think Steph had it right - you really can't know the situation or how you'd deal with it unless you're in it. I sympathise with all people that have to deal with the pressures of this, not to mention the difficulty of being unable to interact with a family member in a traditional manner.
bugs and alex - Again, up shit creek.
Agreed.
But to what extent appears to depend on where you live. I'm in the bush now, but was previously in Canberra, where people would move to from all corners of the Country just to access the ACT Disability Program - A pretty dysfunctional mob I must say, but apparently better than the rest of the country.
Hi Audrey,
I have found this story troubling, and counfounding, but i can't possibly agree with what these parents have done. I wholeheartedly agree with you that the parents' motivations were honourable, and that if this helps their relationship with their child, then this would be a good thing. These seemingly noble motives make it hard to disagree with what they have done.
But the thing is, Ashley is a person, an individual with thoughts, feelings and a personality. She is said to have a mental age of three months, but this is a really, really misleading thing to say. She may have the mental capacity or learning capacity of a three month old, but at present she is a nine year old, with nine years of accumulated life experience, created identity, developed personality. In ten years time she will be a nineteen year old with all of these things even further advanced. She may not be able to go to school, but she is a person, and she has a personality which must be respected. Looking at the photographs which have appeared online and in the papers, this is not a young woman in a vegetative state, this is a person who smiles, laughs, enjoys life. To inflict such intrusive, damaging medical intervention on another person, without consulting with her, is a horrible, horrible thing to have done, and a violation of her rights.
What if all media outlets had chosen to report this story from Ashley's point of view, without discussion of the parents' position on the matter? It would be a story of very very serious assault.
Of course, I am aware that i am prioritising ideals over practicality, and i am aware of the fact that support for people with disabilities and families caring for those with disabilities is woefully unavailable, but surely this means that we should be demanding better support, rather than conducting entirely unnecessary medical procedures on healthy people.
i am worried that this debate is all about where we draw the line, only 10-20 years ago healthy women with mobility impairments were forcibly sterilised, and even young women from conservative cultures, living in australia, were injected against their will with depo-provera to "regulate" their fertility until they were thought "old enough" by their parents. these things are now considered unacceptable, but because ashley can't speak for herself, her parents' actions are deemed acceptable? In fact, forced sterilisation is still conducted regularly in Australia on women who have an intellectual disability, many of whom go on to have healthy, adult relationships. why is it acceptable to do this to some people and not others? who gets to say where the line should be drawn? personally, i would prefer to err on the side of caution and not operate on a healthy child unless it was medically necessary.
just my two cents, and in saying this, i would like to point out that i do respect others' point of view on this matter, and can see both sides of the argument.
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