We are developing the social individualist meta-context for the future. From the very serious to the extremely frivolous... lets see what is on the mind of the Samizdata people.

Samizdata, derived from Samizdat /n. - a system of clandestine publication of banned literature in the USSR [Russ.,= self-publishing house]


I used to know a little girl with severe mental and physical disabilities. She had to be lifted and moved dozens of times a day as she was unable to walk or crawl. It was a source of great worry to her parents how they would cope when she grew up and could no longer be lifted easily. More distant, but greater, was their fear concerning how she would be cared for when they died. Their fears did not come to pass for the saddest of reasons; she herself died when she was still quite small.

I thought of that family when I read about Ashley. Ashley is another little girl with severe mental and physical disabilities; even more deeply disabled than the child I once knew. Ashley is fourteen, but is described as having the cognitive abilities of a three month old baby – in truth, if the description of what she can and cannot do is correct, a three month old baby is better able to communicate than she is. Her parents share the same fears as those of the parents of the girl I knew. They have taken drastic action: they have had her treated surgically and with hormones so as to ensure, within the limits of the technology, that she remains a child for the remainder of her life.

“It was carried out in the belief that her quality of life would improve as it would save her from physical discomfort and pain”, reports the Telegraph. The Guardian, which ran opposing comment articles on Ashley’s case, suggests that another motive was to reduce the effort of lifting her and hence extend the time for which her parents could care for her. I wonder if an unmentioned further reason – one that sounds ghastly but might make sense given human nature – was to try to ensure better care for Ashley when her parents are gone by keeping her cuter. It is a sad fact that many people will find their protective instincts aroused by the sight of a mentally disabled child (or apparent child), yet flinch at the sight of a mentally disabled adult.

Ashley cannot consent and cannot withold consent. This procedure might help – no, it very likely will help to give her the best quality of life possible, for as long as possible in the care of those who love her. Yet the potential for abuse is horrible. Her body is being irrevocably altered for the convenience of those who care for her (but that convenience is no small thing, and convenience is too weak a word; whether they can cope is a major determinant of her quality of life.) If we can do this to Ashley, what else can we do to future Ashleys? More severe modifications to more severely disabled people? To less severely disabled people? To any people?

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9 comments to Ashley

  • Stephen Willmer

    There but for the grace of God…

    On a less evasive note, the parents’ behaviour strikes me as decent, properly hard-headed and at the opposite end of the spectrum to the moral poseur brigade. And yet, what if advances in medical science were to mean that in 20 years the underlying condition was remediable but the parentally-directed enforced juvenilism was irreversible?

  • David Crawford


    And what, exactly, are Ashley’s parents depriving her of?

  • David Crawford,

    Her – nothing. She can’t “use” adulthood. But I don’t share the common perception that “slippery slope” arguments are invalid. Where next? A situation could be envisaged where some mentally disabled person’s useless limbs were causing them pain – do we chop them off? If not, why not?

    However I wrote this piece with no conclusion in mind, either regarding Ashley herself or the precedent she might set. I don’t know. That’s why I am asking what others who share some of my beliefs might think about it.

  • Alisa

    Why think of it in terms of precedents and slopes – rather than discuss each potential or existing case on its own terms?

  • Alisa,

    Because each case discussed opens the possibility (likelihood) that similar but less extreme cases will become open to discussion.

    Each case WILL be used as a precedent for expanding action, that is the way things work. Once an absolute principle is breached then everything subsequent becomes relative. You know that.

  • veryretired

    I have had several discussions about issues similar to this with each of my children at various times.

    My basic point with them, and in this instance also, is that we are entering a vastly complex era of advances in many areas which will be as morally and culturally challenging as any in human history.

    No generation has ever faced the questions that will become commonplace over the next few decades.

    What shall we do with millions of people whom we can keep alive indefinitely, but who can no longer fulfill any functional role in society?

    What shall we do with large numbers of severely damaged people whom we can keep alive indefinitely, but who can never live anything resembling a normal life?

    Where should we draw the line as we develop the capability to tailor the genomes of embryos?

    We are on the doorstep of an era of science-fiction-like advances in biological sciences and medical treatments.

    The traditional moral guidelines of western society will be mightily strained trying to devise rules for these unique situations.

    It is all very well to say that everyone should have everything they need or want, or that we think they need, but this answer demands that the productive elements in society would have to shoulder an enormous burden, far above the normal burden of caring for their own families, and helping the less fortunate.

    My children, and grandchildren, will have to deal with issues never seen before, and find answers unknowable to those of us even now approaching our twilight.

    We live in a culture in the throes of a great moral crisis, one that is rarely mentioned amongst the litany of real or invented crises that dominate our societal conversation, but one that is more fundamental than any of them.

    Is the individual a means, or an end?

    It is from the answer to that basic question that the flow of humanity’s future will be channelled into one path or another.

    One path leads to the sunlit uplands a great man once spoke of, while the other most certainly leads to the abyss.

    In the darkness of a society in which each person is only a means to some greater end, I fear there lie monsters the likes of which even this past century of monsters galore could not imagine.

    I believe we must needs be children of the light.

  • RRS

    We live in a culture in the throes of a great moral crisis, one that is rarely mentioned amongst the litany of real or invented crises that dominate our societal conversation, but one that is more fundamental than any of them.


    Perhaps we are not quite yet at the “crisis” point. But there are more and more instances and events that bring larger numbers of individuals to think in terms of “ought and ought not” rather than purely utilitarian terms of social “consequences.” Despite David Hume’s ought can not be recociled with is, we have to learn over again that ought can, and often does, determine what is.

  • Alisa

    Cats: but that’s my actual point, that more often than not the issues are not really similar, not in principle. See for example the question posed to Natalie and her answer – the latter being a logical non sequiter. Of course precedence is important, but we first need to make sure that we are not comparing apples to oranges, and the only way to do that is to thoroughly analyze each and every case, before even beginning to think about past cases – let alone future ones. This is even more important when we find ourselves in “uncharted territory” such as described by VR above.

  • Alisa

    …’non sequitur’…Bad phone!