Far From the Tree

by Solomon, Andrew

  AM and AD had to persuade the hospital ethics committee that this was a viable set of procedures, and AD put together a PowerPoint presentation for that purpose. The ethics committee devoted a great deal of time to the question. “There were two main aspects to the parents’ requests,” said Dr. Douglas Diekema, who led the ethics panel. “We looked at whether we should permit growth attenuation to occur and whether we should permit a hysterectomy. The first issue was, do these things have the potential to improve this little girl’s quality of life? The second issue was, what’s the potential for harm here and is it significant enough that even with the prospect of some benefit we shouldn’t allow it to move forward? The ethics committee struggled with trying to understand what potential troubles might come to a little girl from this sort of thing. Would someone in Ashley’s position ever really care if they were twelve inches shorter? The conclusion was, in Ashley’s circumstances height had very little value.” Gunther said, “In the end it was the obvious bond and love that exists between Ashley and her parents that convinced them this was the right thing to do.”

  In 2004, Seattle Children’s Hospital doctors performed a hysterectomy and a bilateral mastectomy on Ashley, who was then six and a half. While Ashley’s abdomen was opened for the hysterectomy, they also removed her appendix, anticipating that she would not be able to communicate the symptoms of appendicitis should she ever develop it. Ashley’s adult height is four feet five inches, her weight is sixty-three pounds, and she will never menstruate, grow breasts, or have the breast cancer that runs in her family. “It has been successful in every expected way,” her parents wrote.

  AD encouraged Drs. Gunther and Diekema to publish the protocol, which appeared in October of that year in the Archives of Pediatrics & Adolescent Medicine. A firestorm ensued. Arthur Caplan, of the University of Pennsylvania Center for Bioethics, characterized it as “a pharmacological solution for a social failure—the fact that American society does not do what it should to help severely disabled children and their families.” He suggested that with better support services, Ashley’s parents wouldn’t have been driven to their radical act. Feminist and disability activists protested at the American Medical Association’s headquarters, asking them to issue an official condemnation. One blogger wrote, “If ‘Ashley’ were a ‘normal’ child and the parents decided to have her surgically mutilated, the parents would be thrown in prison where they rightly belong. The ‘doctors’ involved in this case should have their licenses revoked.” Another wrote, “They might as well kill her as cut pieces off at a time. Much more convenient, I’d say.” FRIDA (Feminist Response in Disability Activism) wrote that they were “not surprised that the initial recipient of the ‘Ashley Treatment’ was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.” The Toronto Star complained about “designer cripples.”

  Parents of other disabled children joined the fray. Julia Epstein, communications director for the Disability Rights Education and Defense Fund and the mother of a disabled child, called the term pillow angel “terminally infantilizing.” Another wrote, “My son is eleven, doesn’t walk, doesn’t talk, etc., etc. He’s not going to get easier to carry. And still, I don’t understand removing healthy tissue and functioning organs.” Yet another parent wrote, “Caring for a five feet something, 110-plus pound adult with physical disabilities is no walk in the park. I’ve got the trashed lumbar discs to prove that. But I am truly just sick to my stomach to imagine that it’s acceptable medical practice to surgically stunt a child’s growth. Using their logic, why not just perform quadruple amputations? I mean, really, she’s not going to use her arms and legs.” These comments about growth attenuation echo in some way attitudes toward limb-lengthening for people with dwarfism.

  The backlash shocked the hospital administrators, as it did AD and AM. “It was so extreme, and violent,” AD said. “There were threats in e-mails.” Washington Protection & Advocacy System, a federally mandated watchdog agency, ruled that involuntary sterilization requires a court order, and that the hospital was therefore in violation of the law. Following their report, Seattle Children’s has agreed to appoint a disinterested party to advocate for the interests of any disabled individual for whom growth-limiting treatment is proposed. The debate has gone on ever since, with many commentators opining that the whole question is beyond the scope of medical ethics. In late 2010, the Seattle Growth Attenuation and Ethics Working Group issued new guidelines based on an uneasy compromise: “Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree. But clinicians and institutions should not provide growth attenuation simply because parents request it. It is important to have safeguards in place, such as eligibility criteria, a thorough decision-making process, and the involvement of ethics consultants or committees.”

  Writing in the Hastings Center Report, one member of the Working Group complained of the assault on the Ashley treatment, saying, “This remarkable intrusion into private medical decisions lacks any plausible claim of harm to third parties other than emotional distress on becoming aware that one’s moral or political views are not shared by everyone. By this criterion, parents seeking cochlear implants for a deaf child, surgical correction of club feet or scoliosis, or a do-not-resuscitate order for a terminally ill child should be reminded that their decisions may be offensive to others.” But in the same issue, another author argued, “If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.”

  The moral questions enmeshed in cases such as Ashley’s have become steadily more complex in the last fifty years. It’s problematic to resolve identity conditions, and it’s problematic to neglect medical or social imperatives. AD set up a webpage to tell his side of the story; it has since had nearly three million hits, and at the time we spoke, AD told me he spent about ten hours a week blogging. Describing the protesters as a loud minority, he said that about 95 percent of the e-mail he and AM received was supportive. An MSNBC survey with more than seven thousand respondents showed 59 percent in support of the treatment. “More than 1,100 caregivers and family members with direct experience with pillow angels took the time to e-mail us with their support,” Ashley’s parents wrote. “If parents of children like Ashley believe that this treatment will improve their children’s quality of life, then they should be diligent and tenacious in providing it for them.” In the wake of the controversy, however, the procedure is unavailable.

  Gunther said, “The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope. If we did not use available therapies because they could be misused, we would be practicing very little medicine.” Writing in the New York Times, the Princeton ethicist Peter Singer said, “What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.”

  My conversations with AD made it clear to me that he loved Ashley, and that he believed fervently in the Ashley treatment. While writing this book, I met family after family who didn’t know what to do as their children grew up and became too big to handle. Disability activists often referred to Ashley’s loss of dignity, but having seen a number of similarly disabled people lifted up in pulleys with chains to be removed from bed, put in metal standers to preserve muscle tone, conveyed on rope systems into showers, I cannot see much dignity there. Arthur Caplan and others referred to the need for better social supports for families of people with di
sabilities, but AD and AM undertook the treatment not because they didn’t have resources to get ropes and pulleys and even nurses, but because they felt a different intimacy in carrying their child themselves. Most human beings—children or adults, physically impaired or able-bodied—prefer human touch to mechanical support. Whether that intimacy warrants surgical intervention is open to discussion, but to discount the intimacy and say all that is needed is more access to assistive devices is to miss the point.

  Some activists said that the procedure was not for Ashley’s benefit but to make her parents’ lives less stressful. These things cannot be separated. If the lives of Ashley’s parents are made easier, then they will be able to devote more calm and positive attention to her, and her life will be better. If she is in less pain, her parents’ lives will be improved. They are yin and yang, those lives, and far more important than the choice to undertake a procedure is that AD and AM have not separated from Ashley, nor indicated any wish to do so. Ashley likes rides in the car, and the sound of voices; she likes to be lifted and held; and this treatment appears to mean that she can have many years of these experiences instead of going to a group home. Parental care, which so often outclasses other forms of care, will also probably increase her longevity.

  It is not true that “love is not love which alters when it alteration finds.” Love alters all the time; it is fluid, in perpetual flux, an evolving business across a lifetime. We commit to love our children without knowing them, and knowing them changes how we love them, if not that we love them. Activists are outraged at the things Ashley has lost: being tall, being sexually mature. These attainments are all part of the natural life cycle, but they are not exalted simply because they happen to most people. It’s a subtle moral calculus to weigh out what is lost and what is gained by growth and sexual maturity, what is lost and what is gained by growth attenuation and hysterectomy. No one has said that the Ashley treatment is appropriate for people with significant cognition.

  The calculus is very much complicated, however, by stories such as Anne McDonald’s. She, too, was a pillow angel, permanently unable to walk, talk, feed, or care for herself; she remained small because she was malnourished in the Australian hospital where she was placed in the 1960s. “Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, ‘Been there. Done that. Didn’t like it. Preferred to grow,’” she wrote in a column for the Seattle Post-Intelligencer. “My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I’d lived for 14 years.” Anne McDonald eventually graduated from a university with majors in philosophy of science and fine arts. She traveled around the world. “Ashley’s condemned to be a Peter Pan and never grow, but it’s not too late for her to learn to communicate,” McDonald continued. “It’s profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.”

  McDonald’s story and writing point to the inscrutability of people who cannot express themselves. Nonetheless, her growth attenuation was caused by horrible neglect in the institution where her parents had abandoned her, while Ashley’s was brought about by parents who love her, to keep her with them. McDonald’s intelligence had no chance to emerge; Ashley’s has been given every encouragement. “I hope she does not understand what has happened to her; but I’m afraid she probably does,” McDonald wrote. AD is mistaken in suggesting that Ashley is definitively incapable of mental development; the plasticity of even the most basic parts of the brain means that most people develop with the simple passage of time. A letter in Pediatrics protested, “The idea that we can be certain about prognosis for ‘nuanced’ communication in a three-year-old is simply wrong; too much depends on how the child is raised and cared for and at three years many parents are still too confused and sad to grapple with the future.” In commenting on the Ashley story, Alice Domurat Dreger wrote touchingly of her own mother’s polishing her grandfather’s glasses as he neared the end of his life—“just in case he could still see.”

  Higher-functioning disabled people of necessity speak for lower-functioning disabled people, and the insights of higher-functioning disabled people are precious; their situation is, after all, closer to that of low-functioning disabled people than is that of the general population. A higher-functioning person who used to be lower-functioning—such as Anne McDonald—has particular authority. Nonetheless, claims to common cause are often muddied by projection. McDonald seems to be retelling her own history rather than responding to Ashley’s. Ashley is essentially unknowable both to her parents and to the vocal advocates who believe they have spoken on her behalf. Disability rights advocates complain of a world that refuses to accommodate their reality, but AD makes a similar complaint: that a tyrannical group of empowered people prevents accommodation of an individual and her specific needs.

  “A collective agenda/ideology is being shoved down the throat of all individuals with disabilities, whether it serves them as individuals or not,” AD wrote. “This is disturbing in a society that believes strongly in the well-being of children and in individual rights. We feel the benefits to Ashley on a daily basis. We care about how this might help other kids in her situation. A lot of the criticism came from people who themselves have disabilities and was based on their feeling about how inappropriate the treatment would be for them. Clearly Ashley is in a vastly different category of disability than someone who is able to blog and write e-mails and make decisions for themselves. A chasm separates the two, not a slippery slope like some fear or claim. Newtonian physics works well in most cases, but not in extreme cases. As Einstein pointed out, it fails at high speeds. Relativity explains that very well. So, this ideology of the disability community works well. We support it. In this extreme case, however, it fails miserably.”

  Our understanding of brain science is so advanced and yet so primitive. We still have much to learn about brain plasticity and neurogenesis, and the nature of anyone’s silence is always a matter of speculation. We make mistakes both in doing too much and in doing too little. Norman Kunc, who was born with cerebral palsy and is now a consultant and speaker on disability issues, has described how much of a gap there can be between the benign intention and problematic consequences of treatment for people with disabilities. He characterized his own early experiences with physiotherapy as akin to rape. “From the age of three until the age of twelve, three times a week,” he said, “women who were older than I was, who were more powerful than I was, who had more authority than I had, brought me into their room, their space, their turf. They took off some of my clothes. They invaded my personal space. They gripped me and touched me, manipulating my body in ways that were painful. I didn’t know I had any other choice than to go along with it. To me it’s a form of sexual assault even though it was completely asexual. It’s the power and domination that is part of the abuse. Obviously the therapist does not have the same intent as a rapist, but there is a difference between caring and competence. Many human service professionals assume that, because they care for people, their actions are inevitably competent. As soon as you challenge the competence of their actions, you’re seen as questioning their caring for the person.”

  Kunc argues that doing something with love does not necessarily make it good. Even outside the world of disability, we all perpetrate and are subject to loving yet damaging acts within our families. That damage is likely to be greater and more frequent with horizontal identities because the good intentions are less informed. Because I am gay, my parents hurt me in ways they wouldn’t have if I’d been like them—not because they wanted to hurt me, but because they lacked sufficient insight into what it was like to be gay. Their essentially good intentions, though, are crucial to my adult identity. I can’t be sure whether AD harmed his daughter or helped her, but I
believe that he acted in good faith. Parents are broken and full of error. Intention does not obliterate that error, but I think, contrary to Kunc, that it does at least mitigate it. Being hurt by those you love is awful, but it’s less awful if you know they meant to help.

  • • •

  The word genocide gets thrown around a lot in identity movements. Deaf people speak of a genocide because so many deaf children receive cochlear implants; people with Down syndrome and their families speak of a genocide achieved through selective termination of pregnancies. Few people, however, would propose that people who are deaf or who have DS should be killed or left to die. Though some parents murder their autistic children, the practice is commonly held to be shocking and wrong. In cases of multiple severe disability, however, far more people feel comfortable with such a solution. This is in part because these children often live only by way of extreme medical intervention; they are a modern invention, and the idea of letting them die can be held up as “letting nature take its course.”

  In Rethinking Life and Death, Peter Singer quotes an Australian pediatrician, Frank Shann, who described two children in his care. One had had massive bleeding in his brain and therefore had no cerebral cortex; he was capable only of automatic function. In the next bed was a child who was healthy except for a damaged heart, and who would die without a heart transplant. The vegetative boy was a blood-type match, and his heart could have saved the other child, but this would have required that his organs be harvested before he was legally dead. Since this was impossible, both children died within weeks. Shann said, “If the cortex of the brain is dead, the person is dead. I suggest it should be legal to use the organs from the body of the dead person for transplantation.” Singer does not agree that obliteration of the cortex is equivalent to death, but he nonetheless feels that the death of both children was a tragic waste. Disability advocates would say it is as unthinkable to kill a severely disabled child to save a nondisabled child as it would be to kill one nondisabled child to save another. Dead people clearly have fewer rights than living people, and Shann held that the first child in his scenario was exempt from the rights of the living. There may be science in this, but it feels weird to describe as dead someone who is breathing, sneezing, yawning, even producing some form of reflex smile.