"May God have mercy upon her parents' souls."

 

We have already taken the first steps, in recent years, into a new era where science and ethics will clash, culturally and politically, with an intensity and public speculation we haven't seen for quite some time. Whenever society takes new steps in technology and medicine, this is the case; the social evolution from the beginnings of psychiatric treatment (lobotomies, shock treatment, etc) to contemporary care was essentially an ethical narrative, as was the introduction of the pill. Today, most notably, we have the stem-cell research debate; and furthermore, we have a society increasingly concerned with morality and ethics (which are not really the same thing) - the growth of the religious right imposing a moral perspective on social directions (the "right to life" fight pre-existed the stem-cell controversy, but is a much more volatile affair, and will continue to be so), and the progressive left increasingly desperate to return ethical, one could even say humanist, perspectives to the agenda. All in all, the stage (and ring) is set. The political and military struggles may ultimately define our time, but the relationship between the medical world and the human conscience may very well end up usurping the spotlight. There is no better prelude to this, currently, than the global interest in the story of a little girl known as Ashley X.

If the story of Ashley echoes anything in recent times, it would be the furore over Terri Schiavo, the woman at the centre of the religious protesters (and political sympathisers to the protest - such as Bush) who objected to the effective euthanasia of removing the liquid tubes keeping the woman, in a total vegetative state, alive. But even so, this issue was, although by no means easy to resolve, a fairly clear-cut case in terms of the religious values that pushed the protests (where life - simply being alive - is valued over quality of life). 

 

Like Teri Schiavo, Ashley X is effectively what we commonly refer to as a "vegetable" (the term alone conceptually born from the idea that such a state effectively fails to meet the criteria of what it is to be human). However, unlike Schiavo, Ashley X is still in the beginning of her life, at just nine years of age, and this story does not involve the question of death. Ashley was born with one of the most severe forms of brain damage known to mankind, "static encephalopathy" (which is essentially an extreme kind of cerebral palsy). This means that Ashley will never mentally develop beyond the capacity of a three-month old baby; she will never utter a single word of speech; she will be mostly unable to perhaps even recognise those close to her; and worst of all, Ashley's case is so severe, she cannot even hold her head up, let alone walk or physically interact (unlike a three-month old baby, for example, she couldn't hit - phsycially speaking, but nor would she "think" about doing so - a mobile hanging over her head). If ever the term "vegetable" was an appropriate analogy, sadly, this is it. Ashley's parents have nicknamed her "the pillow angel", because she spends most of her life being delicately placed on a pillow, where she cannot move or respond in any fashion (sometimes - not often - they feel, perhaps hope, that Ashley's eyes have focused on them for a moment; such is the severity of Ashley's disorder, it's a miracle if she even registers the outside world in any form).

Fortunately for Ashley (but this is where some of us will start to disagree), Ashley's parents are both determined, dedicated, wealthy and (most importantly) loving. They enlisted a team of A grade doctors, who eventually came up with a series of operations and procedures that together has now been dubbed, "The Ashley Treatment". In line with the legal requirements of the medical industry, these operations passed the board of ethics, the Chairman publicly responding by stating that the only thing "grotesque" would be "the prospect of having a full-grown and fertile woman endowed with the mind of a baby". This green-light by the medical profession has now become the centre of a "moral" outrage across America ("grotesque", "despicable", "against the will of God", etc, etc), and will no doubt hit this country, any second now. Not too surprisingly, a great portion of the media have run with this in the sensationalist direction, and by the time any real debate enters these articles, readers have already been deliberately shocked by superficial concepts and dubious moral provocation (but the more intellectual and ethical of the journalism industry are now starting to write - albeit in papers the mainstream will never read). So, we're going to have a proper look at The Ashley Treatment. There's no denying the shock in some of what you are about to hear - even Ashley's own parents concede this. But let's also take a look at the ethical reasoning behind these procedures, and begin to consider a life very few of us will ever experience for ourselves.

 

A few years ago, I spent a summer working in a centre for the disabled (teaching them a number from the Sound of Music to perform at a disability week concert), and even my attitudes were changed after this experience. I'm glad this has reached media, in one way, because the disabled of this world are the forgotten minority, and while we get to rant about gay rights, women's rights, racial rights, etc, etc, the plight of the disabled (and their families - it's impossible to separate the impact from that on the family, too) goes pretty much ignored. I considered a career in this field, but after a short summer with one class, to be perfectly honest with you, I found it too distressing, and I couldn't shake a hopelessness that I felt impaired my ability to work in the field (I stood and watched "carers" yelling at kids sitting in their own urine, in classrooms that had broken windows nobody had the money to fix). I would come home every day, sit down, and sob for them - and all I did was spend a few weeks with them. It had never really occured to me, before - or at very least, I'd never really seen it and considered it - the way in which having a disabled child completely alters your life, and sends you down the hardest of roads. It's a truly heart-breaking thing; and with the abominable down-sizing of governmental funding and attention (because, quite frankly, there's no PR value in it to translate into votes, so they really just don't care), it really angers me to see the right-wing fuckers pull out their placards and grab their microphones on something they have not one inch of empathy or understanding toward. Are they ever out there, campaigning for the conditions and programmes available (hardly any) for the disabled in this society, and the costs for decent care? No. It's so good of them to take a break from their campaigning for a war that has killed not only 600,000 in another country, but 3000 of their own, to victimise the families of the disabled and scream to the hilltops about the "right to life", and abiding by God's sacred laws of not taking the decision of someone's life into our own hands. Even if they were going to put Ashley X to sleep, then ok, there'd be a debate to be had. But they're not. This is what they're doing...

1. Hormonal treatment

This treatment is as simple as putting patches on her skin (much like nicotine patches), and essentially fuses Ashley's bones, so that they are unable to grow, meaning she will remain the same size she is now, forever. Her parents explain; "As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, back yard, swing, walks, bathtub, etc) instead of lying down in her bed staring at TV (or the ceiling) all day long."

If you need some convincing of this, have a grown adult lay on the floor and not only remain perfectly still, but somewhat tensed up (why cerebral palsy patients need constant physio), and completely unable to respond to - even register - any requests, such as "just move your arm this way", etc. Then, imagine having to move and carry this person around, everywhere, for the rest of your (and their - whoever's ends first) life. Parents and carers of physically disabled children in such a state, often ironically end up having medical conditions of their own (you've heard about the women getting breast reductions because a lifetime of carrying the weight actually injures them? Well, imagine this). And while there was a small push in the late 80's to equip various public centers with mobilisation facilities, that era is long gone. Her parents are right; in the end, it becomes physically impossible to give the child (once fully grown as an adult) the same life and experiences of stimulation provided by being the size and weight of a child. Most end up, in true millennial fashion, in front of a television (even though they can't actually absorb what's happening on the television beyond the basic stimulation of moving colours and sounds that make no particular sense), with exhausted, often emotionally shattered parents. This also leads to (but every factor in this leads to this) these children being placed more quickly, and for longer amounts of time, in disabled care (which, I can assure you, is mostly in a woeful state, if it is available to them, at all).

2. Blocking breast growth (removing breast "buds")

Clearly, since she will not grow beyond this size, her breasts also need to be adhered to (and as it is, Ashley comes from a family of genetically large-breasted women). If Ashley were to grow breasts, the results and impending problems are fairly obvious.

3. Removing her appendix and uterus

This is the one that has caused the most outrage, for obvious reasons (the Christians, in particular, have called this "sterilisation" and have equated it with the abortion issue). This has two main desired results: she won't be able to conceive, and she won't be able to menstruate. There are a variety of problems associated with both of these.

Foremost, menstruation is a messy and timely (for something that has no purpose for someone in a vegetative state) affair. The maintenance that is required for going to the toilet is enough as it is, but imagine dealing with menstruation with someone who lays in one spot, and cannot move or communicate. Again, this also means that during her period, she is unable to be moved around or taken on outings, restricting her experience and quality of life (and it should be noted that any small improvement in her mental capacity that could be hoped for - and I emphasise small - can only come from sensory stimulation).

The other problems with this is that their bodies (because their growth is deformed) cannot always cope and deal with this in the same way ordinary women can. Add this to period pain, adding unnecessary discomfort that the disabled person has no mental concept to even understand.

And here's the harsh reality of the lives of disabled people, too. The instances of sexual molestation in disabled communities eclipses that of any other. The reasons for this are clear - they are easily manipulated, they have a sexual development that has all sorts of problems psychologically (although this is not applicable to Ashley's case), and (this is applicable) they are physically defenseless. There is a whole other (most saddening) article to be had on this matter, with a range of issues that relate to this (such as the underfunding of disabled care resulting in no checks or even qualifications needed in order to mind them - some even are taken, these days, from the work for the dole programme); but the fact is, regardless of how safe we like to think these people are, and regardless of what care is given by parents to make sure this doesn't happen, it does. And the resulting pregnancy (which means abortion, becauase some of them - Ashley would be in this group - cannot physcially carry and give birth to a child, let alone psychologically be a parent).

And that's it. Cast stones, as you see fit; but I urge you to have a good, long think about what your life would be like with a vegetative child, before doing so. Thankfully, many have now come out in support of the family - mostly from the scientific community - such as the American Scientist organisation, who released this statement;

"These parents feed and bathe Ashley, clothe and carry her--just as they would an infant. Recognizing she would never improve, they decided to start controversial treatments... Who are any of us to second-guess their motives--or to judge what they have done? Unless parents of children with similar ills, we can imagine but cannot possibly know what goes into dealing with a child in such circumstances, a child who will never grow emotionally or intellectually, never be able to learn or to play... who will be forever dependent on us or on someone else for her care.

It is hard enough to raise a healthy child--let alone one with a condition like Ashley's. Clearly, these parents did not reach their decision lightly or on their own: They sought the input and the approval of a panel of ethics experts at the University of Washington in Seattle--and the treatment was only started after its OK. The board debated and thoroughly explored all of the ethical questions involved, such as whether these parents have the right to tamper with nature and to prevent this child from growing physically or to ever have children of her own.

Ashley has the mental ability of a three-month old infant and physicians have said there is no hope of her ever improving. She cannot walk or talk, she cannot care for herself now and there is no chance that she will ever be able to care for herself.

And therein lies the heart of the matter. It is very easy to judge from afar, but the bottom line is that these parents are doing what many others have chosen not to do or cannot do, perhaps because of a lack of federal and state support: They are caring for their severely disabled child, while others in their situation may have (and have) thrown in the towel long ago and turned over her care to someone else, perhaps even institutionalized her. They deserve credit not criticism. These parents have given us no indication that they are self-motivated, that they are driven by their own needs or greed. If they were, they would have washed their hands of the whole matter the moment they realized the hopelessness of Ashley's situation and the emotional and physical toll her care would take on them.

They also deserve credit for publicly revealing their plight--and opening the debate on such a volatile subject so that others might benefit from the discussion."

Indeed, the parents have responded, publicly. On New Years Day, they began to blog their thoughts on the matter. It is currently the most viewed blog in the world. In it, they endeavour to humanise the debate and their story, and to bring awareness and understanding to those now part of the attack against their decision, such as the sentiment offered by the Progressive U ;

 

"God created human beings in His image and likeness.  We are supposed to respect His creations and not alter them.  These parents are acting like God.  I do not believe that they have the right to stop Ashley's growth, remove her breast buds and, sterilize her.

How can this really be a 2006 medical procedure?  It's sterilization, for goodness sake!!!  The doctors say that he condition is so bad that she'll never have a hope for reproduction, so it isn't considered sterilization.  Well, she now has absolutely 0% of reproduction.  This seems like sterilization to me.  And I didn't think sterilization was permitted in the 21st century.

The parents seem to have no hope for their child.  They think that she's stuck in the place she's currently at forever.  But miracles happen."

 

Don't know about you, but I think we're bombing the wrong country (okay, okay, it's just a joke, before you start bashing me). Thankfully, Ashley's parents have used their blog to address this new Christian war of morals;

 

"Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains he endowed them with) to maximise her quality of life.

Knowingly allowing avoidable suffering for a helpless and disabled child can't be a good thing in the eyes of God."

The blog also gives a personal and in-depth look at the lives of parents caring for a severely disabled child, and is well worth a read. If anything, it undersells the real difficulties, because these parents are at least reasonably wealthy (it all gets harder for those who are not - but granted, one of the most unrecognised problems is that even wealthy families, once faced with a disabled child, are subsequently drained, not just emotionally, but financially).

I do understand the "Where will it end?" debate; but there's a difference between those who understand the premise of this question, and those who respond with it out of misinformed emotion with a pre-disposed agenda. This is not one of those times where this question is applicable, because the approval of Ashley's procedure was very clearly based around the severity of her disability, in so much as that she has no mental capacity for things that would otherwise create problems, like self-perception, social identity, etc. Those disabled kids who do have enough capacity to interact and essentially "think", would be ineligible for these procedures, for these kids, like other normal children, want to grow old and be adults, and have the same sense of "when I grow up" (something that would be potentially damaging if it was toyed with). All these discussed physical problems still arise for these disabled children, once they are adults (some of the elements are much worse, if anything, for those who can mentally understand what's going wrong), but because these kids have a self-perception and schemas of social placement and constructs, etc, the ethical scales would become unstable and the procedure unsuitable. Ashley X is so disabled, it will be a miracle if she follows her father across the room with her eyes; "Sometimes, we think she recognises us, but we can't be sure", he admits in their blog. Ashley's condition is 100% irreversible, the chance for improvement described by her doctors as "non-existent".

That her family have taken the time, effort and money to take such an unprecedented step to secure their child's quality of life (and so too is the quality of the carer's life a part of the quality of life for the individual they care for) should be applauded, not condemned.

 

The Ashley Treatment blog: ashleytreatment.spaces.live.com

And another wonderful article on the uproar by Angela Phillips from London's The Guardian