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I am a bad cripple, one who, for the past week, has been very angry. What is a bad cripple? It is a person such as myself with an obvious disability who is well aware of their civil rights. When I am confronted with ignorance and bigotry, I do not bow down. I reject the stigma associated with disability and when my civil rights are violated I am quick to act. This does not make me popular—indeed, people often seemed stunned when I assert myself. People characterize me as angry because they fail to understand my anger does not stem from disability but the social inequities that I as a disabled person encounter. In short, disability is not a medical problem—it is a social malady. This is why I have been so upset this week. I read and heard about a story I cannot get out of my mind: it was called the “Ashley Treatment”. Ashley is a mentally and physically disabled 9-year-old girl who was subjected to surgery and hormone treatments to prevent growth and render her body child like for the rest of her life. Her parents sought out this extreme treatment because they had the best interests of their daughter in mind. If I have learned one thing in my life as a disabled person it is that when someone has my “best interests in mind” I am in very big trouble.
Let me be blunt: the so-called “Ashley Treatment” is morally reprehensible. All involved in the extreme treatment she was subjected to have been caught playing God. The “Ashley Treatment” affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond. In my opinion there is no difference between myself and Ashley despite the great disparity in our intellectual abilities. If you doubt this let me relay one story from my childhood. In 1972 I was a 7th grade student at a Catholic school in New York. The school was not unusual but I was. I had a rare neurological condition that was beginning to take its toll on my ability to walk. Shortly after school started I vividly recall homework being handed out and the nun came over to me and said, “You no longer need to do homework because you are one of God’s special children”. I was delighted and confused. When I got home I loudly announced that I had no homework in that needling tone kids use to annoy their siblings. My mother asked me why and I repeated what the nun had said. My mother looked stunned. I could also see the steam coming out of her ears. Within a few minutes she was out the door and when she returned she told me I was going to public school—the next day. How she arranged all this in one afternoon is a mystery but one thing was clear: no matter how sick I was and regardless of my ability to walk I was not one iota different from my siblings and peers. I was a Peace and in our family, my mother told us, we hold our heads up high and straight.
How does my experience relate to the Ashley Treatment? My parents perceived me to be a human being and forcefully rejected the stigma associated with disability. They considered me to be equal to my siblings and peers and protected my civil rights. In contrast, Ashley’s parents are grossly selfish and have thoughtlessly accepted dominant socio-cultural norms about disability. They have cast themselves as martyrs in the face of a heart wrenching tragedy. They alone will care for their developmentally and physically disabled child and her “healthy sister and brother”. Gee, aren’t they great? I think not. They are not content to just violate their daughter but have created two terms, the “Ashley Treatment” and “Pillow Angel, and created a blog (http://ashleytreatment.spaces.live.com/) that has shined a giant spot-light on themselves.
In choosing this course of action I consider the parents to be modern day Frankensteins or a perverse Modern Prometheus as Shelley’s 1818 classic novel was subtitled. In coining the term the Ashley Treatment and Pillow Angel doctors have not only over reached the bounds of ethics in medicine but 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 and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of disabled people, particularly those like Ashley with a profound mental disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology and know how to prevent her from becoming Frankenstein–a developmentally disabled adult.
Unlike Shelley’s Frankenstein, Ashley is human and her story is not the work of science-fiction. In the last three years Ashley’s body has been violated and transformed—pumped full of estrogen for years and subjected to elective surgery. What doctors have done to Ashley is described in detail on her parents blog and I will not discuss this at length for two reasons: first, my focus is on the social perception of disability not a medical model. Second, interest in the surgery Ashley has undergone and the way her body has been transformed into a child-like waif forever caters to prurient interests. What exactly is the Ashley Treatment? According to her parents, it is the name they gave to a “collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and associated discomfort to Ashley”. After years of hormone therapy the Ashley Treatment was completed in July 2004. At that time a combined hysterectomy, breast bud removal and appendectomy surgery was performed. Seen every three months by her doctor the result of these procedures are expected to “reduce Ashley’s untreated height by 20% and weight by 40%”. Rather than grow to an expected height of 5’6” tall and weight of 125 pound Ashley is will not grow beyond 4’5” tall and weigh 75 pounds. In a rare lapse of annoyance, the parents point out “If we started the treatment at a younger age, the benefits to Ashley would have been greater”. What are these so-called benefits and how do the parents justify subjecting their daughter to such a gross violation of her body? And more to the point, exactly what is so wrong with a developmentally disabled adult that requires such extreme measures and surgery?
According to Ashley’s parents, her reduction in size will reduce the possibility of pressure sores, pneumonia and bladder infection. The main benefit of size and weight reduction is the ease with which Ashley can be moved by her caregivers. It also negates the need for special equipment as she can fit into a standardized tub. The hysterectomy was performed to prevent Ashley from bearing children and she will “avoid the menstrual cycle and the bleeding/discomfort/pain/cramps that are so commonly associated with it”. The most controversial procedure, removal of the breast buds to prevent growth was performed because there is a history of large breasts in her family as well as breast cancer. Since Ashley cannot stand, her parents argued that large breasts would be uncomfortable and impede Ashley ability to be secured in her wheelchair and stander. Her parents were also concerned “large breasts could sexualize Ashley toward her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse”.
When news of the “Ashley Treatment” surfaced in the mainstream news my thoughts returned to two aspects of Ashley’s case: first, did a medical ethics board approve the treatment and, second, why did her parents refuse to identify themselves yet create a blog about their “pillow angel”. When I heard about the Ashley Treatment I was stunned—not by the parents decision or the creation of their blog but rather because her treatment was discussed and approved by a medical board of ethics at Seattle Children’s Hospital, a highly respected teaching institution. According to the parents the committee was comprised of 40 individuals and chaired by Douglas Diekema, director of Education at the Treuman Katz Center for Pediatric Bioethics in Seattle. In an interview by Amy Burkholder for CNN Dr. Diekema recalled that the “ethics committee struggled with trying to understand what potential troubles might come to a little girl from this sort of thing [growth attenuation, hysterectomy, and breast bud removal]. Would someone in Ashley position for example, ever really care if they were 12 inches shorter? The conclusion was in Ashley’s circumstances where she would never walk or talk, that height had very little value. We needed to look at the different meaning of these sort of things might have to a little girl who is as profoundly disabled as Ashley was”. When asked if he was not concerned that Ashley will never grow Diekema responded that it would if Ashley “was running around a play ground” but that it made “less of a difference when she’s in a chair”.
Ethical panels such as the one led by Diekema are supposed to insure ethically flawed procedures are not undertaken. When I finished reading the Diekema interview my first thought was of a book I read—Nothing About Us Without Us by James Charlton. This book was among the first to study the global oppression of people with disabilities and the emergence of the disability rights movement to resist it. This book proved to me that I as a disabled person was no different than any other disenfranchised minority group. Charlton’s title Nothing About Us Without Us was perfectly titled for I wondered if there was a disabled person on the ethics panel in Seattle. Has a disabled person been present I wonder if the outcome would have been different. I also wanted to know if Ashley been “normal”—that is not disabled—would this treatment have even been considered? The obvious answer is of course not—but the unspoken corollary to this is what does this say about the social perception of all disabled people.
Controversy sells and makes for dramatic sound bites and catchy headlines. In the last week hundred of articles have been written and more than a million people have searched the internet for information about Ashley. I have tried to read as much as possible about the Ashley Treatment and am shocked that virtually no media outlet or well-known person has stated what is painfully obvious: why has society utterly failed those like Ashley who are unable to care for themselves? Why is it so exceptionally difficult to accept disabled people for who they are? Why are developmentally disabled people abandoned, abused, and institutionalized? The solution to these questions are not to be found in hospitals or mutilating developmentally disabled children with the “Ashley Treatment”. Thirty years have passed between the time a nun called me one of God’s Special Children” and the use of the “Ashley Treatment”. Sadly, this has led me to conclude little progress has been made with regard to the social perception of disability and disability rights. The terms used are a pejorative excuse to justify an anti-social a-humanistic evaluation of disability.
I understand the gritty logic of the “Ashley Treatment”. The parents describe their daughter as being a “Pillow Angel” because “she is so sweet and stays right where we place her—usually on a pillow”. Although they are unsure whether she recognizes them, Ashley “brings a lot of love to our family”. Aside from the fact it is obvious the parents have infantilized their daughter, they know better than I that it is one thing to care for a mentally disabled child and something entirely different to care for the same person as an adult. Developmentally disabled adults are among the most shunned and stigmatized members of society. Thus in my view Ashley’s parents have succumbed to society’s basest prejudice against disabled people. They have failed not only their daughter who they love but all other “Pillow Angels” they seek to help. The “Ashley Treatment” is not and was never about one disabled child. Toward the end of the blog about Ashley, her parents wrote:
We want to avoid sensationalism or philosophical debates about what we did and why we did it. We’d rather care for and enjoy Ashley than get into endless debates. In our opinion, only parents with special-needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or the care giver. Furthermore, in the case of the female aspects of the treatment, women are in a better position to relate to these aspects and the benefits for which they are intended”
On the parents blog they write about being overwhelmed and gratified by the response the blog generated. They have also added many laudatory pages from people who sent them email since the story of Ashley received such notoriety. A critical or disheartening word is not to be found. This leads me to conclude that the parents are so wrapped up in their own experience with Ashley that they are unable or unwilling to accept the fact their actions have never been just about their daughter or the medical procedures she underwent. They may have endorsed and created the term the “Ashley Treatment” and “Pillow Angle” but the implications, one’s that must be considered, go far beyond estrogen therapy, hysterectomies, and breast bud removal. Individually those are medical procedures that have been available and perfected long ago. I am less concerned with medicine as a science but rather with the social decision that went into the application of the Ashley Treatment. The problem Ashley’s parents encounter is not within the walls of the hospital where such extreme measures were taken but in the social construction of disability in the eyes of American society.
William J. Peace is an independent scholar. He is the author of Leslie A. White: Evolution and Revolution in Anthropology. He has contributed articles about disability in the Ragged Edge and scholarly publications such as Disability Studies Quarterly. He can be reached at firstname.lastname@example.org