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Op. Ed.For the Sake of Convenience: A Regrettable DecisionBy Penny Reeder I have a friend whose eyes were removed when he was a newborn, a day or so after doctors told his mother that he would never be able to see. "The doctor told my mom that my eyes were useless," my friend explains. "So, the doctor said they should just remove them, because they would cause me nothing but trouble. My mom didn't know what to think, or what to do, so she agreed to the surgery I never remember having eyes." "It doesn't bother me," my friend says. "Mom did the best she could do." But, my friend has never experienced a day without feeling the weight of sunglasses pressing on his nose and his cheekbones. Back in the '50s, no one knew anything about sclera shells or prosthetic eyes, or even whether retinas that were prodded by mysterious membranes might, in fact, be able to process light. My friend doesn’t think about whether his mom’s decision on his behalf was right or wrong. He says, “She did the best she could do.” I have heard about children whose parents decided when they were infants that they needed surgery to be given cochlear implants so that they would hear more “normally.” Some people who are deaf think that such forced surgery in the absence of the patients’ consent is synonymous with child abuse. We have all heard horror stories about children with cognitive disabilities kept in the back bedroom, or terribly abused or neglected inside institutions that kept them out of sight and far from “normal” family life. On the other hand, many of us know families for whom children with Down’s syndrome or other developmental disabilities are the lights of their lives. These parents are willing to go many extra parenting miles for the sake of their children, to spend untold hours searching out the best programs and the best opportunities for their differently abled sons and daughters, and to think, earlier than most of us who are parents, about planning effectively for their children’s futures. Many of us with disabilities know other people who are blind, or deaf, or who have cerebral palsy, or who cope with impaired mobility whose first doctors recommended that their parents “forget about them” and place them in institutions where people who “knew how to care for such children” would do a better job than their parents could. Often the adults who recount these stories shake their heads in wonder and tell us how grateful they are that their own parents didn’t listen to the so-called “experts.” And now, the new year brings us the online story of “Ashley,” the Pillow Angel,” whose parents have set out to stunt their daughter’s growth with mega doses of estrogen and surgeries to remove her uterus and the buds in her chest that would have become her grown-up breasts, so that she can be more easily “cared for,” presumably into perpetuity, by the parents who love her. These parents obviously cherish their daughter whom they call “angel;” they have been willing to take extraordinary steps to protect her and to provide for her future comfort and care – and their own, and they claim to have started their blog, (1) to share information about Ashley’s treatment with other care-givers of severely disabled children, and (2) to set the media straight: We didn’t do this, they say in so many words, for our own convenience, but rather to make our little “pillow angel” more comfortable. But the decisions they have made on their daughter’s behalf make many of us with and without disabilities, with and without children of our own, cringe. And, what makes me cringe even more than my response to the invasive strategies these parents have employed to manage their daughter’s growth and to maximize their convenience as her care-givers is that a board of 40 ethicists – one that advises the Seattle medical facility where little Ashley’s surgeries were performed and her medical interventions managed – has approved these invasive treatments for a child who cannot speak for herself. What ethical system deprives a human being of sovereignty over her own body? Do considerations of parental convenience and distaste toward the processes of development, sexuality, and growing older in a child whose cognitive ability will never progress beyond that of infancy outweigh the considerations we associate with basic human rights and personal dignity? I sympathize with Ashley’s parents. I believe that most parents, including Ashley’s, love their children and do the best they can do. I know that it’s even harder to know what to do if your child is more vulnerable than she will ever be capable, if you are overwhelmed by fear about what her future may bring and the terrible knowledge that your life circumstances cannot guarantee the safety and caring that your child deserves should you no longer be able to be there for her. I wish that Ashley’s parents had received different advice about what might be “best” for their daughter, and I wish that the possibilities they envisioned for their daughter’s future and their role in that future had seemed more affirmative than constraining. I do not approve of the choices they made for their child, but then, who am I to approve or disapprove? Neither my status as a parent, or a person with a significant disability gives me any more moral authority than that granted to Ashley’s parents simply by virtue of their being her parents and caregivers. I know that Ashley’s parents did what they thought was the right thing to do, just as my friend’s mom so many years ago did what she thought was the right thing to do when she allowed doctors to remove his eyes when he was only a few days old. But, I wonder how that board of ethicists can justify the approval they gave Ashley’s parents and her doctors. How can these arbiters of what is right and what is wrong have agreed to rob the child of her essential humanity? Is it not among the basic rights granted to each of us – no matter what our “mental age,” or our level of ability or disability – to grow, and to develop, and to experience the life changes that occur with the passage of time? Was it Ashley’s parents pet name for their daughter, “pillow angel,” that made it easier for the ethicists to deny the child’s basic humanity and to grant permission to doctors and surgeons to provide medical interventions that will keep her forever small, forever sterile, forever a diminutive treasure positioned on the family pillow: loved, yes! – but not quite a “real” little girl. Although the specifics of what they did to their daughter make me shudder, there are plenty of parents in the big cyber world who, according to the blog, agree with, and even applaud the medical interventions that Ashley’s mom and dad chose for their child three years ago when she was six. If another similar family, having read Ashley’s parents’ blog, were to come to me for advice, however, I would tell them that medical invasions are not acceptable ways to cope with a child’s disability, and that even the most severely disabled among us share a basic humanity that should not be violated, for the sake of anyone’s – even what others might consider our own – convenience. My quarrel is with the ethicists, men and women who are so focused on the child’s disabilities that they would approve sacrificing her humanity on an alter of medical treatment and a concept – an adult’s concept – of convenience. Such a sacrifice is a dangerous sacrifice; such a denial of humanity is neither ethically right nor morally justifiable. Ashley’s parents, who were scared and overwhelmed and worried, and who probably share a basic American faith in the “promise” of science and the curative powers of medical intervention, –like my friend’s mom, likely did the best they could do. But the ethicists upon whom they relied for advice and judgments about the morality of their proposed course of action, did not. They disregarded the rights of another human being, and for that decision and for their misjudgments, we may all pay too dear a price in the future. Ashley already has. |
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