Ashley Treatment requires fuller understanding
It seems to me that there are two general schools of thought: those who believe that no-one apart from Ashley X’s parents themselves are in a position to judge their actions, and those who think that they should be condemned for eternity. Only a few can appreciate how deep and complex the issue is. When you think about it, it has to be complex—how could such an extreme situation not imply complexity? But just as the critics too often refuse to think the treatment through thoroughly because of their gut reaction, the “understanding” too often refuse to do the same on the grounds that only they are in a position to understand.
As much as we would like to think this as their business and theirs alone, the fact of the matter is that this is a world-first and it will set a precedent, whether we like it or not. It might be their lives, but if things carry on it’ll be everyone’s treatment. People have every right to treat such a radical treatment with scepticism. They have every right to question and scrutinise the processes that led to its acceptance. What they don’t have the right to do, though, is dismiss the treatment as unnatural, immoral, or undignifying, without first understanding what it involves and why.
The biggest criticism is that to stunt her growth removes Ashley’s right to have a “normal life”. As it happens, Ashley was never going to have a normal life. The extent of her disabilties—and the inability for her brain to develop past that of a three-month-old—mean that her life was destined for abnormality. So, we can have eased abnormality (treatment), or troublesome abnormality (no treatment). Hmm. Tough call.
When it becomes a disability rights issue though—and this was always going to happen—it becomes a matter of human dignity, and the issue of other similarly disabled persons undergoing the same treatment without choice. How anyone could manage to conclude that a full-sized adult needing constant care, with having to heave her to change her position (a two-man job) and dealing with her periods, and the like, has more dignity than a child-sized adult (or however you want to look at it) that’s lighter, easier to involve in activities, and doesn’t have menstrual cycles for other people to deal with, is beyond me. Yes, it means the girl is easier to take care of. Ashley’s parents claim that it was more about her quality of life than taking care of her, but the way I see it, they go hand in hand. Someone in her condition that is easier to take care of will, by consequence, have a better quality of life, which in turn implies a more healthy dignity (and the more moral option).
And even though I did acknowledge that this would set a precedent, the treatment for children with “static encephalopathy” would not set a precedent for patients with mild cerebral palsy or other lesser neurological disabilities. It would set a precedent only for those in equally demanding situations. Ashley’s parents report of many e-mails from parents in similar situations that wish they had the treatment. Clearly, Ashley’s parents and the ethics committee that approved the treatment are not alone in their view.
Is it fair and reasonable, then, to say that Ashley X’s mind is limited to that of a three-month-old? It would be wise, perhaps, for Ashley’s parents to explain along with their detailed rationale what led the doctors to that conclusion. But doctors are smart, trained people who, I am sure, have conducted more tests than “her motor skills are lacking”. There do exist other tests for encephalopathy (or at least, Wikipedia reckons so). If critics want to argue that we can’t truly know whether or not her brain’s working, well, we can’t truly know anything about anything, we only ever just have evidence to believe. Is questioning the medical profession really the best argument?
In fact, in their wild attempts to launch attacks on Ashley’s parents, people often quote the contents of their blog out of proportion and out of context. The removal of breasts, for example, was not to reduce risk of breast cancer or to reduce risk of rape: it was to avoid them being a pain for Ashley, both in their largeness which apparently runs in the family, and the fact that she has to be strapped into her wheelchair across the chest. The removal of her uterus was not to avoid infection, but to avoid the menstrual cycle which—let’s face it—for someone in her position (of all people), will be hard, to say the least. In all honesty, there is a part of me that thinks Ashley’s parents made such secondary justifications—which are, to be fair, rather weak—just to give them a peace of mind that they were doing the right thing, and that they probably could have exercised more care in expressing such rationales. But ultimately, the primary justifications were rational and it is these, not the secondary implications, that should be considered.
The “Ashley Treatment” is radical and it does deserve critique and attention, but on balance, I still conclude that Ashley’s parents are taking the right steps. As parents, they are obliged to make such a decision on their child’s behalf, and they are not only doing it in good faith, but they’ve discussed it with countless professionals and thought it through clearly to make sure it’s the best option. This shouldn’t be taken for granted, and its controversy means that society is aware of what it is doing to itself—which is a good thing. But reading about it, and weighing up the pros and cons, it seems to me that the Ashley Treatment was the right thing to do.
- NZ Herald: Your views: The Ashley X debate
- NZ Herald: Ashley X and the perils of morality (9 January)
- Wikipedia: Encephalopathy
- The “Ashley Treatment” (Ashley’s parents’ blog)
- Existence is Wonderful: “Ashley X – Avoiding Oversimplification” (blog)
- Sentient Developments: “Helping families care for the helpless” (blog)
- SilverSpiral.net: “Ashley X” (blog)
- My View from the Center: “The Frozen Child and the Pointless Debate” (blog)
- Did I Miss Something?: “It begins with Ashley.” (blog)