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.
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