Who is the decider of the good life?

By Razib Khan | March 18, 2012 2:21 pm

‘Ashley treatment’ on the rise amid concerns from disability rights groups:

A controversial procedure to limit the growth of severely disabled children to keep them forever small – which ignited a fiery debate about the limits of medical intervention when it was first revealed five years ago – has begun to spread among families in America, Europe and beyond.

Five years ago details first emerged of Ashley, a nine-year-old girl living near Seattle. She was born with developmental disabilities that meant she was unable to talk or walk, and continues to have the cognitive ability of an infant.

The core of the treatment was hormone therapy: high estrogen doses to bring forward the closure of the growth plates in her bones, which would in turn stop her growing. In addition, surgical interventions included removal of her nascent breast buds to avoid the discomfort of fully-formed breasts later in life, and a hysterectomy to avoid menstruation.

..

Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund that is run jointly by disabled people themselves and parents of children with disabilities, said: “This is what we were fearing. It is becoming just one more choice on the menu of possibilities – a medical operation that will change a person’s life. Who has the right to decide to change an individual into a different entity?


There are two dimensions of evaluation here. The positive, and the normative. As alluded to above the menu of possibilities are going to expand radically in the foreseeable future. So there’s no point in putting our heads in the sand on this. You start out with preimplanation genetic screening, and move all the way to irreversible physical changes as outlined in the story at the link. In the specific case the rationale for these changes is pretty straightforward; humans with the minds of infants or toddlers but the bodies of adults can be extremely difficult to control. I have a little personal experience in this area, as I worked with a mentally handicapped young man as his “minder” for a term in secondary school. His cognitive profile was probably similar in many ways to a one to two year old, but he was of average height and somewhat above average weight. One of the major issues with this young man is that he needed to be kept under surveillance, as he had a tendency throw fits and assault random people. Conventional moral reasoning simply did not work with him, because as I said he was barely a toddler mentally (he has a very minimal comprehension of language). Now expand this to the problem which parents and relatives have in caring for an individual with the physical capacities of an adult, but the mental aptitudes of a very young child. Imagine the temper tantrums of a two year old in the body of a thirty year old. This is a reality for many.

But let’s move to the normative dimension: who makes these decisions, and who decides who and what an individual becomes? The former is to a great extent a prosaic matter of power politics. Parents and institutions, civil and governmental, have long battled over children. But the latter is a deeper philosophical issue. What makes you you? There are many individuals for whom their religious identity is simply an essential part of who they are, but usually that identity is conferred upon them by their parents. Do the parents have the right to create such an individual, with a particular sense of self? My point is that when you moot the issue of identity in a deep fundamental manner you open up a huge can of worms, and broader issues which go back to David Hume and further deep into the mists of antiquity.

Finally, as a new parent these sorts of stories have a heightened salience for me. They are usually presented in a narrative style which strips away the substance of lived experience, and pits several actors and agents against each other. Here you have the parents and a group of activists, along with the governments and hospitals. But the organic reality of living decades as a caregiver for a profoundly disabled individual is removed from the picture. The impact that it might have on other children, or on your social relations more generally are not present in the narrative. We live in a world where many parents neglect their children, or enter into the stage of life of being a parent with relative casual interest or focus. But these particular parents, who are put in a position of extreme difficult emotionally and materially, are monitored with great care, and have a whole cadre of public interest lawyers devoted to making sure they do the right thing (the “right thing” being what others determine).

The root problem we have as a society about discussing these issues is that we don’t have a fully fleshed out explicit model for what the good life is. There are some activists in the disability rights movement who deny that the lives of people we generally classify as disabled lacking in anything. This is a complex question, because to some extent we are all imperfect. But is a world without children in wheelchairs or children with Down syndrome a lesser world? Too often the arguments in favor of allowing for nature to take its course in these matters are reminiscent to me of the arguments of Leibniz. I lean against the idea that we need the physical and mentally disabled, at least more than the suffering which these disabilities impose upon individuals who are the subjects of the suffering, or the families around them. I do not believe that we must evaluate all questions as matters of individual utility, but that is certainly where we should start.

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  • omar

    The intervention of distant “interest groups” is so regularly beset by problems (mostly of the type you can imagine if you think closely of your close friend who is a very vigorous left wing activist or right wing activist and then imagine him or her applying the same “logical thinking” to a real person’s very difficult personal problem, instead of harmlessly going on about Obama and Romney, you will get the picture) that one aspect needing attention my be just that: how to limit the distance over which strangers interfere in people’s lives. I dont see any practical way to do this in our society (and we are probably headed further down that road, not away from it) but I just wanted to throw that out there. Like most dilemmas, its not straightforward (otherwise it would not be a dilemma) and there are more than two sides to every story, but if anything, the balance in modern society seems to have shifted too far in favor of strangers and away from the people actually involved in any given situation.
    And yes, I know that “strangers” organized against slavery. Yes. They did, probably even did a lot of good.
    So, its a dilemma.

  • Karl Zimmerman

    This is an example of why I think rights need to be limited to those who could testify in some minimal fashion as to their own wishes. Allowing for a wider definition of rights – for example, allowing the severely disabled, the unborn, or animals to have them – is problematic as in 100% of cases instead of the actual aggrieved party forming the movement, it’s an “advocate” whose own interpretation, even if not blinded by ideology, is otherwise based upon subjective experience and preconceived notions. Allowing such people to advocate is only marginally better than allowing clergy to advocate for the wishes of God in court, as at least they are intervening for something which is known to exist, even if the actual wishes are impenetrable. Not much better though.

    Of course, I also don’t believe in rights in a classic sense anyway. As a non-theist, I don’t believe any rights are inherent. Human feelings of suffering and oppression, however, are essentially universal, and I see no reason why society should not, in a utilitarian fashion, try to minimize these. It seems like the procedures outlined do this.

    The one disturbing thing from the article you linked to, however, was the newsgroup for these children’s parents called them “pillow angels.” It makes me wonder if part of the desire isn’t simple ease of care, but to infantalize their child to an even greater degree. Perhaps, even if the desire is in part rooted in self delusion it’s not all bad though, as a more childlike appearance may make other subconsciously provide better care, similar to how infants tend to be offered better levels of care than the very old.

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    #2, i bet the issue re: infantilization is pretty simple: less troublesome to change the diaper of a smaller person than a larger person. as a semi-pro infant diaper changer i can’t imagine what it would be like to have to change your adult child’s diapers for decades on end.

  • http://sacrilicio.us Matunos

    Who is the decider of the good life? That would be Conan: “To crush your enemies, see them driven before you, and to hear the lamentation of their women.”

  • http://sacrilicio.us Matunos

    #3: Don’t forget physical strength.

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    #5, right. this is a big issue when you have adult males, and their caregivers are smaller females, or older parents who are no longer physically robust.

  • Karl Zimmerman

    Razib –

    I understand your point entirely, although as a parent of an older child, let me tell you once they start eating solid food, the diapers are far more awful to change. Heh.

    More generally, however, I think infantilization is much more deeply rooted than you think. I’ve noticed many people get deeply disturbed, for example, when even mildly developmentally disabled people show signs they are hormonally adult. This is the case even if their sexualized behaviors aren’t really particularly disruptive. It’s almost as if the human mind needs to slot everyone in a “conceptual age” – and experiences cognitive dissonance when someone shows a mosaic of childlike and adult traits.

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    I’ve noticed many people get deeply disturbed, for example, when even mildly developmentally disabled people show signs they are hormonally adult.

    there’s a major reason that parents of these people get disturbed by their maturing: they are often targets of sexual abuse by weirdos and the like. additionally, many of them are not sterile, so there’s the issue of them having children. there was a case years ago where the parents of one such teenager wanted to get her sterilized because she was being targeted by sexual predators, but it became a big court case (a public advocate intervened to block this).

  • Sandgroper

    I got on my high horse and got very outraged recently because a disability advocate in Australia recounted the story of a 4 year old mentally normal girl who was subjected to a hysterectomy, only to be calmed down by my own sister, who tells me that it happens a lot less frequently there these days than it used to – the example being given was well outdated (as the mother of a 39 year old physically and mentally disabled son, she knows more than a little about the subject at close quarters).

    The context of the story was that disabled girls are the most targetted group for sexual abuse, and the debate was about whether they should be de-sexed to avoid pregnancy from that abuse, or whether that is just blatantly the wrong approach.

    But on a different note, the reality there is that many families of the more profoundly disabled put them into government funded care. The other thing that hit me is that 20% of the total population of Australia is classified as ‘disabled’ and therefore entitled to some form of government-funded allowance. (If this seems as impossible as it first seemed to me – then, for example, all children with chronic asthma are classified as disabled, as no doubt are many older people with problems from arthritis, and also associated with obesity.) The dilemma for the disability advocates is that having more people classified as disabled gives them more political push, but means there are more people sharing in the tax-payer funded benefits that derive from that.

    So, the practical reality is that there are constraints to how many disabled people society can afford to carry, as distasteful as that may be.

  • Charles Nydorf

    Pardon my naive faith in scientific progress, but shouldn’t we take into account the possibility that medical breakthroughs may, some day, correct apparently intractable disabilities.

  • anon

    If they have the intellectual capabilities of a toddler, is it crueller for them to keep the body of a toddler or for them to develop into hormonally charged body of a teenage then adult?

  • Ria

    Let me ask. For those who advocate denying personhood (ie: rights…since if you deny rights, you are denying recognition of personhood) to the disabled…you appear to be defining the disabled (whether mental or physical) as defective because they differ from “the norm” in some respect, so how certain can you be that you or someone you love wouldn’t also be labeled defective because of some other difference from “the norm”? This is a sliding scale. And every single time civilizations start down this road by claiming that “this time it’ll be different”, someone gets into power who defines “different” in a new way that marginalizes a new group that results in some new atrocity. As if the initial experiments in eugenics weren’t atrocious enough. The only way that all human beings will be given the liberty to live their lives free of the fear of unreasoning legally-sanctioned murder because they belong to a particular group is if all human beings are respected simply for being human beings. That means that we need to carefully consider the issue of personhood in a legal context. I realize that we all have a gut impulse to marginalize those who exhibit traits that are not desirable (for whatever reason) in the next generation…and that makes sense from a biological perspective, but it’s not civilized.

    I have family members with either mental or physical disabilities, and both family members have contributed in significant ways to both my family and to society. In neither case did the doctors predict that this would be possible. Is it harder to care for someone with either a mental or physical disability? Yes. Does it require sacrifice on the part of the family? Yes. Can it cause strife? Yes. But it can also bring a family together, teach the family members to care for someone else as much as they care for themselves, and to learn how to function as a unit, not as just an individual. When you remove those who need this extra help from society, you remove the mortar from society that helps to keep us together as a society. People become more self-centered, too insulated, and have too difficult a time seeing outside of their own interests to understand the needs of the society as a whole. We are seeing some of this now in our political discourse (the inability to compromise on anything for the betterment of America). And lest people focus solely on the cost of caring for those who need the extra help…if we’re going to focus on cost, then why would anyone ever have children? After all, children are extremely expensive, and while there’s a possibility that they may come to live up to the parents’ expectations for a better livelihood than the parents have, there is no guarantee….there is not even a high probability. Caring for the disabled basically gives a double-dose of the lessons that being a parent gives in terms of selflessness, giving, love and sacrifice.

  • Geack

    @12.,

    “When you remove those who need this extra help from society…” You have your timeframe backward. The long-term care of people so profoundly incapacitated is an essentially modern phenomenon; in the past such care was simply untenable, and the sufferers either were killed or left to die, or died despite their caregivers’ best efforts. The question at hand is actually how to deal with the relatively recent lifelong inclusion of such people in society.

    Acknowlegment of incapacity in some does not equate with, or lead to, arbitrary discrimination toward others. There are countless reasonable and workable means by which a society could determine under what circumstances and to what extent one person’s rights might be ceded to others. One good example – the ability to in some way express one’s preferences – has been proposed in an earlier post above.

    Your implication (that the current discussion regarding the rights of caregivers to lessen the burden of caring for the profoundly disabled represents a coarsening of society and an increase in selfishness) is completely off base. Broadly speaking, the disabled are better cared-for today than at any prior time in human history, and they face far less isolation and discrimination than in the past. People of good faith and good intentions hold differing opinions as to how best to accomodate the lives of those who would have been unsupportable in previous eras, and the discussions continue. To imply that one side of this many-sided discussion would lead to social decay is thoughtless and unproductive.

  • Karl Zimmerman

    12 –

    To give some background, I’m not talking out of my ass here. My father had Multiple Sclerosis growing up, and was unfortunate to be in the minority which gained a form of early onset dementia. He was incapable of an intelligent conversation by the time I was in high school, and broke his hip and became essentially bedridden while I was in college. The last few years of his life he was essentially non-responsive. It became very clear to all of us that there was, in his case, no “there there” – his mind was really slowly vanishing. We made the best decisions that we could, including ending treatment when he had no quality of life. The last thing that any of us needed was some “advocate” who had no idea of the circumstances butting in the middle of family decisions, and making their own determinations, separate from the family, on what would be right for them.

    More broadly, I don’t think it’s a slippery slope, because the standard of limiting rights to those who can voice their desires is pretty clear-cut. Arguably, more than few great apes have passed this threshold. There’s a clear slippery slope on the other side of your argument however – as it’s a clear pro-life argument as well regarding fetuses, since it’s another case of human life which is essentially not self-aware (I think the pro-choice movement made a major blunder trying to argue a fetus isn’t alive – it clearly is, it’s just not a person). Although, if you’re coming from the pro-life perspective, viewing “humanity” as central is understandable.

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This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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