- BIOETHICS FORUM ESSAY
Ashley and Me
When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched.
The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require?
There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal and the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation, but the end result was an illegal sterilization.
State laws vary with regard to sterilization, and they are contentious and contradictory. Virginia, for instance, has the most protections, and extensive due process steps must be undertaken before a court may give permission for surgery on someone unable to give informed consent. What the state laws all hold in common is that the greatest controversies over sterilization pertain to people who, like Ashley, are unable to consent.
I am not suggesting that sterilization of people with profound cognitive disabilities is wrong – in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process.” These are the words of Douglas Diekema, Ashley’s physician and the main proponent of the Ashley treatment.
What ethics committees need to focus on are the facts, and foremost among them is that growth attenuation and the Ashley treatment involve sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history reveals the inherent dangers of overlooking the sordid experience of sterilization.
For example, 63,678 people were victims of compulsory sterilization in America between 1907 and 1964. Some had mental illnesses, and others had perceived cognitive or physical deficits. This history highlights the profound discrimination people with disabilities have experienced, but I feel that it also reflects my own marginalization from American society.
Exclusion has remained a constant for “idiots,” “imbeciles,” and “incompetents.” While the words we use have changed significantly since the early 1900s and the notorious Buck v. Bell Supreme Court decision in 1927, which upheld the forced sterilization of an institutionalized woman, the deprivation of basic human rights has remained constant. Many states retain laws that deny basic rights to those deemed “mentally incompetent,” and even those individuals with adequate support often spend their adult life in poorly supported institutions. In short, I am talking about a group of American citizens, Ashley included, whose civil rights and now bodily integrity are open to question.
In the last 100 years, many justifications have been used to deny civil rights to people with intellectual disabilities. In much the same way, those that promote the Ashley treatment or growth attenuation have proposed many reasons why such a radical intervention is ethically acceptable. The parallels between Buck v. Bell and the Ashley treatment are striking.
In the majority opinion, Oliver Wendell Holmes Jr. determined people with intellectual disabilities to be “manifestly unfit” to exercise their rights. For Holmes, the core issues were rationality, independence, economic productivity, and morality. Those who lacked the ability to meet these American norms and, most importantly, did not possess the ability to care for themselves became lesser citizens. These “lesser citizens” forfeited their civil rights in exchange for care.
Those who provided care, whether state employees or family members, held great power. They alone made the decisions that were deemed to be in the best interests of their dependents. This sort of power over a human being is fraught with the potential for abuse.
What are the larger implications of the Ashley treatment? The answer to this question is clear to me: the Ashley treatment is about more than one girl in Seattle – it is about all people with disabilities. We are the Other, a pervasive and important concept in the social sciences. The Other are strangers, outcasts if you will, people who do not belong. The Other often have fewer civil rights and experience gross violation of those rights.
Thus at a fundamental level there is an us-and-them – those with a disability and those without. This is a false dichotomy, but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important, nor is the type of disability. We people with a perceived disability are the other.
Given this, I do not consider myself one iota different from Ashley, in spite of the great difference in our cognitive ability. In developing the Ashley treatment, doctors have not only overreached the bounds of ethics in medicine but also sent a shot across the bow of every disabled person in American society.
The message is very clear: disabled people are not human – they are profoundly flawed beings, and extreme measures will be taken to transform their bodies. Consent is not necessary. Modern science has come to the rescue, and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley did not need to be saved.
William J. Peace is an independent scholar. This essay was adapted from a talk he gave on April 28, 2010 at “Disability, Health Care and Ethics: What Really Matters,” a conference sponsored by the Maryland Health Care Ethics Committee Network and the Law and Health Care Program at the University of Maryland Law School.