A young American girl’s body, which would otherwise have developed normally, has been intentionally deformed at the behest of her carers. Tim Cannon explores the ethical issues in this unprecedented case which has divided medical opinion.
Readers may be familiar with the story of Ashley, a severely disabled nine-year-old girl from the US who, earlier this year, completed a series of medical procedures collectively known as “The Ashley Treatment”, at the instigation of her parents, ostensibly with the intention of improving her quality of life.
“The Ashley Treatment” involved the stunting of Ashley’s growth, and the removal of her uterus and breast buds, for reasons which included the avoidance of menstrual cramps, the minimisation of discomfort associated with breast development, and generally, the increased likelihood that, with a small body, Ashley’s family will be able to better care for her, and share with her a greater variety of activities and experiences throughout her life.
The treatment, which was approved by an ethics committee at the Seattle Children’s Hospital, and was vigorously advocated by Ashley’s doctors and parents as being in her best interests, nonetheless sparked a firestorm among ethicists, medical practitioners, and feminist and disabled persons’ advocacy groups, attracting strong vocal support from some, including ethicist Peter Singer, and outrage among others.
Ashley’s disability is indeed severe. Her intellectual development has been assessed as being equivalent to that of a three-month-old baby, and will never improve. She cannot walk, or even change her position in bed. Her neck is supported by a brace, because, on its own, it cannot support the weight of her head. In spite of her disability, Ashley has a normal life expectancy.
Supporters of the treatment typically argue that Ashley will experience greater well-being because the treatment has removed the prospect of a great deal of pain and discomfort which the natural development of her body would inevitably have brought about. It removes the risk of cervical cancer, and of pregnancy arising from rape.
Furthermore, supporters cite the improved likelihood that, with a smaller, more manageable body, Ashley will be able to participate in a far greater range of activities with her family, and with far greater frequency, because her carers will be able to assist her more ably in a petite form.
All of this seems well intentioned, and one can only assume that Ashley’s parents and doctors genuinely hold her best interests at heart.
Still, the thought that this young girl’s body, which would otherwise have developed normally, has been intentionally deformed at the behest of her carers, naturally induces a sense of moral repugnance, and it were well we should examine why.
Obviously, the doctors performing the procedure had an inkling that, well intentioned as the treatment may be, it strikes a somewhat discordant note in the medical chorale. Without such an inkling, they would have had no need to form an ethics committee to determine whether or not to proceed with such a treatment.
Indeed, Time magazine (January 7, 2007) reported that, while the decision provided no moral dilemma for Ashley’s parents, her doctors were well aware that treatment of this kind was unprecedented and highly controversial.
Those who support the committee’s ultimate decision to ignore objections of conscience and to proceed with the treatment advance the justification that Ashley’s natural development would actually be an impediment to attaining the best quality of life that can hoped for in the case of a person whose mental condition is equivalent to that of a three-month-old baby.
Furthermore, they argue, Ashley’s stunted, post-treatment body actually better reflects her mental state. As Dr Daniel Gunther, one of Ashley’s doctors, told Time: “Ashley will always have the mind of an infant, and now she will able to stay where she belongs – in the arms of the family that loves her.”
Her doctors also contend that the nature of care which Ashley may be given in a small body – which can be easily lifted, moved, and even cuddled – will be more dignified than the often awkward care which is required for fully-grown persons.
Finally, writing in The New York Times (January 26, 2007), ethicist Peter Singer rejected out of hand the notion that Ashley, and mentally disabled persons like her, command any dignity at all. He argued that their infantile mental state renders them undignified, and that any “preciousness” which we perceive in them is actually derived only from the love and care which they are given.
The crux of the debate, it would therefore seem, rests on our understanding of Ashley’s dignity as a person, and the source of such dignity, if indeed she commands any at all.
The utilitarian view of the body, to which the treatment implicitly assents, is highly problematic. On a website which they have set up to defend and promote the treatment they have championed, Ashley’s parents assert that “Ashley has no need for developed breasts since she will not breast-feed, and their presence would only be a source of discomfort to her”.
According to such reasoning, one may suggest that Ashley could also do without her arms and legs, which she will never have the ability to use.
Implicit in this rationale is a rejection of the idea that the human body might in itself command dignity, a dignity which deserves and demands preservation.
It is worthwhile noting that the history of medicine has concerned itself primarily with the preservation of the health of the body itself. The Ashley Treatment, however, treats no existing disease or condition in the patient, but rather inflicts physical disfigurement on an otherwise healthy body. This is indeed a new kind of treatment.
If Ashley’s doctors find no dignity in her physical body, but consider it a mere impediment to her sense of well-being, then they must find it in her intellect. As we have already seen, Ashley’s mental state has been determined to be equivalent to that of a three-month-old baby, and it is in this context that the treatment has been undertaken.
But how should we understand such a diagnosis of Ashley’s mental state?
In an online article, “Whose convenience? Whose truth?”, Eva and Jeffrey Kittay relate their own experience of raising and caring for a daughter who suffers from a similarly disabling condition to Ashley’s. The couple state: “We do not believe [our daughter] is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for 37 years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of ‘comparable’ capacities could have.” (Bioethics Forum, February 28, 2007).
In this light, we can reject as erroneous, or at the very least, as misleading, Dr Gunther’s assertion that “Ashley will always have the mind of an infant…”. In light of the Kittays’ testimony, Ashley’s mental state will rather progress throughout the course of her life in relation to all that she experiences. Her progression will be markedly different to that of a completely healthy person, but her mental state will not be frozen in time.
The Kittays go on to argue that Ashley’s physical development is intrinsically related to the uniquely natural development of her mental state, given that her body, like their daughter’s, is “part and parcel of that store of information and effects” which characterise her life.
Ultimately, the Kittays refute the premise that dignity derives only from mental ability, which premise is implicitly relied upon by the doctors’ decision to proceed with a disfiguring method of treatment, and which is explicitly advanced by Singer. They expose the absurdity of a yardstick of dignity which would see more intelligent humans laying claim to a greater degree of dignity than less intelligent ones, a logical conclusion of Singer’s idolatrous estimation of mental ability.
Rather, they argue, dignity reflects the intrinsic worth of the whole person – mind and body – and is thus present in all people, regardless of mental state.
In an interesting epilogue to Ashley’s story, the controversial treatment came under further scrutiny just last week, with a US federal authority, the Washington Protection and Advocacy System (WPAS), determining that, because the doctors performing the procedure did not obtain a court order of approval, the removal of Ashley’s uterus was unlawful (The Australian, May 7, 2007).
According to the authority’s executive director, “Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval.”
Although the WPAS has no plans to sue, its findings demonstrate the high degree of public concern regarding Ashley’s Treatment, and serve as a warning to doctors considering such treatment on other patients.
– Tim Cannon works as a research officer with the Thomas More Centre.