Topic: Science & Technology

“Ick!” versus Ethics, Part 1: The Infantilization of Ashley

Many people, and even some ethicists, will react emotionally to what is new and strange and label it unethical, a tendency that has been dubbed “the Ick Factor.” Airplane flight was initially regarded by many as not just dangerous but wrong: if God had wanted man to fly, He would have given him wings. In vitro fertilization was at first condemned as “playing God,” and some saw gene-splicing to create useful bacteria as the infernal invention of a modern Dr. Frankenstein, until they got used to the idea. Today the process of cloning seems wrong to much of the public; a recent survey revealed that a majority of us wouldn’t even eat a cloned vegetable because, well, we just wouldn’t trust the stuff. But eventually gut feelings that something must be unethical have to yield to substantive ethical analysis. Does something feel wrong because it is unfamiliar and disturbs our view of the world, or does it feel wrong because it is wrong?

This is also the contentious point where morality and ethics diverge. Just a few decades ago, the majority of Americans regarded homosexuality as wrong. The moral part of this conclusion was based on religious teaching: the Bible, Koran and other holy texts condemn homosexuality as sinful. The ethical part, however, had to rely on facts. If homosexuality was unethical, then it had to violate ethical principles—it had to harm society or individuals. Since homosexuals were generally closeted well into the 1970s, the average American based his unethical verdict on rumor and conventional wisdom. Homosexuals were vile people who chose to be sinful; they preyed on children and enticed the young into perverted practices; they spread disease. Over time, as gays became visible and prominent in many fields and understanding overtook ignorance, the ethical arguments against homosexuality collapsed even as the moral condemnation remained unshakable among those who regard the teachings of the Bible as infallible. Here, as in many other instances through the centuries, the Ick Factor led the public to confuse personal revulsion with ethical judgement until what seemed new and frightening became commonplace.

Today the Ick Factor is particularly active in the fields of medical and bioethics. Perhaps the most startling of the recently reported ethical dilemmas is the story of Ashley, a brain-damaged girl of nine who cannot walk, talk, sit up or eat and who has an infant’s level of consciousness. It was revealed that in 2004 her parents authorized a series of surgical measures that will keep their daughter physically nine for the rest of her life. The operations included a hysterectomy and breast surgery, and she is receiving hormone prescriptions will prematurely fuse her skeleton’s growth plates. She will never exceed 4 feet 5 inches rather than her predicted adult height of 5’6,” and her weight, which would have been about 125 pounds if she had been permitted to grow naturally, will stay at 75 pounds.

Ashley’s parents say this is all for her benefit. They argue that their surgically infantilized daughter will suffer from fewer bed sores and be more comfortable with a smaller body and no breasts. Her parents will always be able to transport the streamlined girl like a baby. “We will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long,” her parents have written. But some advocates for the disabled see the so-called “Ashley Treatment,” now being considered for other patients, as an outrageous violation of human dignity. They argue that such measures would be clearly unethical if applied to an able-bodied patient with the same mental limitations. Her hysterectomy is particularly controversial, evoking as it does the deplorable eugenics procedures forced on mentally disabled patients during the first third of the 20th Century.

Jeffrey Brosco of Miami University wrote an editorial in the Archives of Pediatrics & Adolescent Medicine in which he criticized the procedure as an unethical experiment without proper research controls. “This is a technological solution to a social problem,” he wrote. “I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly.” That is a fine sentiment, say advocates of the Ashley Treatment, but Ashley’s parents, who are not wealthy, can’t wait for federal funding that may never come.

There are certainly some red flags in Ashley’s treatment. The suspicion lingers that her parents are being driven by aesthetic considerations as much as by practical ones. Rather than watching the grotesque spectacle of a fully grown woman with the cognitive abilities of a baby, they will have their little girl to hold and comfort. If their only concerns are bedsores and ease of care, why stop at stunting Ashley’s growth? Why not lop off her arms and legs, and carry her around in a big snuggly? Why is it more important to avoid the extra weight of breasts than to eliminate the greater burden of her useless limbs? And as soon as the technology is available, surely Ashley’s parents should consider discarding her body entirely to maintain her living head in a jar like the immortal celebrity noggins preserved on Matt Groening’s satirical animated show, “Futurama.” Talk about making it easier to transport Ashley! According to her parents, she attends a “school for the disabled”—why, she could be carried there in a bowling ball case!

Are we horrified yet? Still, these hypothetical mutilations may not be any more unethical than what was actually done to Ashley, only more “icky.” If there is an ethical violation here, we should be able to find it by applying classic ethical tests to the Ashley Treatment.

  • Does the Ashley Treatment violate Reciprocity, or the Golden Rule?

    Obviously none of us would want to be sterilized, stunted and kept from adulthood, but it is unreasonable to apply the Golden Rule this way when the circumstances of the individual in question are so unusual. The real question should be, “Would Ashley want the Ashley treatment in her special circumstances, if she had the mental capacity to consider it?” One can easily imagine that she would approve of the surgical changes to her body if it meant trading the uterus she would never need and an adult body that she couldn’t control for less pain, more comfort and mobility, and less of a burden on her parents. On the other hand, the hypothetical Ashley might reason that if growing is the only thing her disabled body can do, nobody should take that away from her. Because the real Ashley can’t consider the trade-offs, the Golden Rule doesn’t provide useful ethical guidance to Ashley’s situation.

  • Would we be willing to approve the Ashley Treatment in all similar circumstances, applying Kant’s classic test of universality?

    Answering this question requires reaching a consensus on what constitutes human dignity for an individual who doesn’t have the capacity to seek it, recognize it, or experience it. Harm to the individual isn’t really the proper focus of the inquiry; Ashley wouldn’t feel denigrated or humiliated if she were used as second base at Yankees stadium or as a centerpiece, any more than Terri Schiavo felt embarrassed by having photos of her frozen open-mouthed stare on the front page of every newspaper in America. We know the benefits that her treatment supposedly confers on Ashley, but where is the harm? If there is harm, it must be harm to us, and our respect for humanity. If we treat the human body with so little reverence that we are willing to mutilate and distort it for convenience, will this coarsen our culture and diminish our respect for all human life? If so, is that a fair price for us to pay to save Ashley from her bedsores? Do we want to live in a society that is not repulsed by the Ashley Treatment? What other attitudes would such a society embrace? The Scoreboard can speculate just as you can, but definitive answers to these questions are elusive. Kant too fails to solve the Ashley conundrum.

  • Will the long-term consequences of accepting the Ashley Treatment result in more pleasure than pain? Will the end justify these means?

    Utilitarian analysis of problems like this inevitably must deal with the “slippery slope” objection. If we are willing to push the ethical limits to include surgical stunting of a brain-damaged individual, what will stop us from pushing them further? Ashley has been locked into the body of a nine year-old forever. Why not freeze a future Ashley at the physical development of a five year-old? A six month-old? All severely retarded and brain damaged children become harder to care for as they get older and enter puberty; doesn’t the Ashley Treatment make as much sense (or more) for them, whether they have her physical limitations or not? But ethicists have to differentiate between “slippery slopes” that are inevitable and those that can be controlled. The fact that a natural extension of an ethical practice may be unethical does not make the ethical practice wrong, unless it must lead to the unethical. A prime example is cloning. There are many potential applications of cloning that are unethical, such as making clones to serve as captive organ donors for the original individuals; this was the premise of the film “The Island.” But society does not have to permit such a practice. Cloning itself is not unethical. Similarly, we cannot judge the Ashley Treatment by its future unethical offspring. We can prohibit those that are truly unethical; that slope does not have to slip. It is impossible to predict whether the Ashley Treatment will lead to more good results than bad.

And thus we find ourselves back at where we started, it seems: repulsed by the pragmatic mutilation of a young disabled girl, but unable to show that our objections are based on ethical principles rather than a visceral reflex. In the absence of a convincing argument that the Ashley Treatment is wrong as well as grotesque, the Scoreboard’s verdict—reluctant and sheepish though it may be—is that the infantilization of Ashley cannot be condemned as unethical.

Related Commentary: "Ick!" versus Ethics, Part 2: Designer Disabilities

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