By Chris Leary
The case of the severely disabled girl, known only as Ashley, who has undergone surgery to remove her womb and breasts, and will receive other treatments to keep her anatomically at a stage before puberty raised profound questions, not just for socialists, but for all people who care about human society. Those question — about consent, personal autonomy and medical interventions with profoundly disabled people — cannot be done justice within a single article. But some immediately stand out.
Medical technology has made massive advances in the past fifty years, improving the quality of life for billions of people across the globe. It has been a good thing. For some disabled people it has meant the chance to take an active part in society and to live an independent and fulfilling life.
Some say her parents did not have a right to intervene with medical technology. A fair enough point of view, but it ignores the fact that Ashley has the mental capabilities of a three month old baby. When I was a child I didn’t have further hearing tests performed on me, even though several doctors said that there was something wrong with my hearing. Turns out the doctors were right and I’m now undergoing the tests I should have had when I was two or three.
Am I bitter about it? I was, but I’ve moved on, I guess, and I’ve learned to live with my disability to the point where I don’t know if I could cope with normal hearing. But I’m now a 21 year old, fully developed, with regular decision making capabilities and personal autonomy. In short, I am my own man, and I can make my own decisions. Ashley, however, can’t.
So perhaps it is acceptable for Ashley’s parents to make her undergo a surgical intervention and hormone therapy?
There does appear to be a method in what some perceive to be the parents’ “madness”. Her parents claim that a smaller body and an absence of breasts mean that it is less likely that Ashley will develop bed sores. Ashley’s parents also claim that, by removing her uterus and womb, the massive risk of cancer in her reproductive system — especially cervical cancer — is reduced. This heightened risk isn’t obvious, the parents just seem to be taking no chances., although they also they have received medical advice from the team of physicians who looking after Ashley.
These surgical procedures as well as an intensive course of oestrogen therapy are intended to lengthen the life expectancy of Ashley, and no doubt they will. However some aspects of the treatment seem to me to be less than altruistic. Ashley’s father was interviewed in the Guardian on 4 January. He said, “But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old.” He is, quite clearly here, imposing his values on his daughter.
But just because the father’s reasoning leaves a lot to be desired, it doesn’t mean that the effects of his reasoning - i.e. the surgery performed on Ashley — won’t have the positive side effects they claim for it. She will live to a natural age in relative comfort.
Radical? Sure. But desperate people take desperate measures and it won’t have been undertaken by her parents without a serious amount of soul-searching; on one level, we have to conclude just this, “who are we to judge.”
However more needs to be said.
1. Socialists abide by the principle of informed consent — that people of sound judgement, armed with the facts, should be able to make their own choices. The question of how you deem someone to be informed and capable is a tricky one, and it may only be resolved on a case-by-case basis. But what if a person cannot consent?
Again, it may depend upon the circumstances. Having sexual intercourse with a person who is incapable of giving their consent is rape. However, life is not a series of binary choices; not everything is black and white, it is grey scale. Say, for example, a person was run over by a bus and they were critically ill in hospital, hooked up to a life support machine. Could you say that they are capable of giving their consent to either switch off the life support machine or keep it going?
The Hippocratic oath has, as one of it’s most fundamental pledges, “do no harm”. The assumption is that people don’t want to die, so doctors, naturally, do everything to treat the sick.
This is the logic, I presume, of the physicians who are treating Ashley. They are doing everything they can to ensure she can live a relatively healthy and long life.
This is why, on balance I personally am in favour for the surgery because I believe it will help Ashley in the long term. Technological advance might mean that the surgery Ashley is undertaking might be totally unnecessary at some point in the future, but to believe that and withhold treatment now would be like taking an armful of chips and placing them all on lucky red seven at the roulette table. You can’t second guess progress and you can’t predict it.
2. Socialists fight for the right to life. We want people born with disabilities, even profound disabilities to lead a fulfilling, dignified life. We insist that society will provide them with the tools, the facilities, the help and medical treatment in order for them to take their place in society.
But the level of provision for disabled people are still woefully low, even in the 21st century in rich countries like Britain. This country is still chronically gripped by disability discrimination.
I’m only hard of hearing, and trying to interact with a society for which good hearing is a prerequisite for participation is a frustrating and depressing experience. And I think I’m lucky. What must it be like for someone with cerebral palsy, or other complex disabilities? I can’t imagine.
The bottom line is that, in this able-bodied biased, profit driven society, treatment and care is still dependent upon financing. In the United States, it’s all dependent upon what kind of health insurance you have. Ashley’s “college-educated professional” parents have good insurance and can afford (or rather, their insurers can afford) to have the best care possible treatment for Ashley. However, for working class parents with disabled children, the story is quite often different. The NHS apparently will not countenance this sort of treatment. Is it because of ethical considerations, or is it because of cost?
Ashley’s surgery is also an alternative to the highly complex nursing care someone in her position would need when older. An alternative to regular respite care for parents. These things are simply not available in Britain or the US. It seems that, if you’re going to be born disabled, then at least be born disabled into a rich family.
Ultimately I don’t think there is such a thing as the “right” answer in cases like this, nor can their be a “socialist” position on it, either. But there are still very important issues which need more discussion.
