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MatterWhy I Burned My Book and Other Essays on DisabilityWhy Not Kill Them All?Why Punish? How Much?Why Some Things Should Not Be for SaleWisdom, Intuition and EthicsWithout ConscienceWomen and Borderline Personality DisorderWomen and MadnessWondergenesWould You Kill the Fat Man?Wrestling with Behavioral GeneticsWriting About PatientsYou Must Be DreamingYour Genetic DestinyYour Inner FishYouth Offending and Youth Justice Yuck!
Surgically Shaping Children collects sixteen essays inspired by the Hastings Center's Surgically Shaping Children (hereafter, SSC) project. Erik Parens directed the project and edited the collection. The SSC project brought together social scientists, medical professionals, and medical ethicists to study cultural, medical, legal, and ethical issues arising from appearance-normalizing surgeries performed on children: surgery to make ambiguously appearing genitalia appear more like that of one sex; limb-lengthening for achondroplasia; and craniofacial surgery for children with cleft lips and palates.
Some of the issues arising from these surgical procedures include:
- the age and capacity for consent, the criteria for competence to consent; whether SSC's require different criteria for consent than other childhood medical procedures;
- stereotypical beliefs about sexuality, beauty, and the self-esteem of someone affected by a condition resulting in non-normal appearance;
- the value of appearance and normal appearance; the relationship between appearance and psychological identity;
- the quality, style, and method of ethical reflection on practical ethical issues that involve social, psychological, medical, and cultural elements;
- the pervasiveness of technological solutions in contemporary medicine and the influence of technologically inspired beliefs on the desire for surgical 'fixes' to non-normal appearance;
- parental responsibility for children's' well-being;
- the patient-surgeon relationship's difference from the general patient-physician relationship;
- medical and social conceptions of disability;
- children's 'rights' to influence decisions about the medical treatment they should undergo;
- the relation between surgically altered appearance and psychological, economic, and social benefit to the person whose appearance is altered;
- the sources of information, opinion, and evaluative advice for parents and children who deliberate about appearance-normalizing surgery;
Surgically Shaping Children takes up all these topics, though the collection does a better job of raising issues than resolving them. That may be inevitable given the heterogeneity of the issues and the unsettled state of theory, value, and politics regarding disability, consumerist movements in medicine, and sexuality. The collection includes first-person narratives, third-person studies by scholars not affected by conditions resulting in non-normal appearance, and writing that combines first-person narrative and third-person study. I shall refer to all contributions to the collection as 'essays.'
Of the standard concepts of Western philosophical ethics, the ones that make a significant appearance on the stage of Surgically Shaping Children are well-being, consent, and legal and moral rights, and autonomous control of one's life. No contributor discussed the response of utilitarian, Kantian rationalist, virtue, or natural law ethics for the questions arising from SSC's. There is less of a role stoic acceptance than I would expect, given that these essays deal with involuntary conditions that deprive affected persons of what are commonly thought to be goods of life or influence the affected person's ability to attain the goods of life.
Significant roles go to relative newcomers in Western philosophical ethics: feminism; liberatory movements of patients, minors, the 'disabled,' or different; the importance of the body, family, and relationships; the wisdom of marginalized persons, those affected by conditions resulting in non-normal appearance. Understanding and incorporating these relative newcomers holds promise that future decisions about surgery to alter appearances will be more subtle and less influenced by assumptions and stereotypes. Sherri G. Morris describes the liberating effects of supports groups for intersexed people; James Edwards explores the possibility that religiously-inspired acceptance is similar to Heidegger's appeal to a perspective other than the technological relegation of person's to the role of standing reserve; Priscilla Alderson and Hilde Lindemann advocate greatly increasing the authority given to children in deliberation about medical treatment; many essays discuss the psychological processes by which parents decisions for their children's SSC's reflect the parental wishes, culturally influenced beliefs, and attempts to atone for the guilt of bringing a child into the world who does not satisfy criteria for normality.
I had the impression the medical professionals who contributed to this collection were trying to incorporate the uncertain psychological and social outcomes of SSC's, advocacy by affected persons, and the diverse evaluations normal appearance with their medical authority and relative confidence about biological and physiological outcomes. This is no simple task. Particularly touching are the consecutive chapters in which Wendy E. Mouradian describes her dependence and vulnerability on her surgeon and frankly states the difficulties obtaining sufficient data to accurately predict quality of life for those who undergo surgery for craniofacial conditions.
There is a feature of these essays that I find curious. All these authors seem quite aware of the influence of surgical technology and the authority of physicians. There seems to be less awareness of managerial technology. On the one hand, essays by Emily Sullivan Sanford, Lisa Abelow Hedley, Arthur Frank, Eva Feder Kittay, and Edwards point out cultural factors influencing parents and professionals to unconsciously favor technological fixes for non-normal appearances, at the cost of physical and psychological pain and discomfort to their children for uncertain benefits. It is difficult to overestimate the power of factors such as the wish for a child who looks normal when they are bear on parental feelings of responsibility for children. Edwards, Lindemann, and Frank point out alternative cultural factors that might counteract the pressure of the technological culture. When it comes to practical suggestions for limiting the influence of such factors in our technological culture, other writers seem unaware of the powerful factors favoring technological fixes.
The result is that the most common suggestion for practical change in medical decision-making is that children themselves be given greater authority and responsibility for decisions about appearance-normalizing surgery. The curious feature is that giving children greater authority and responsibility is itself a procedural fix that does not address the cultural factors that influence us to favor technological solutions. Further, as a procedure that can be routinely incorporated in medical settings, it is managerial fix which is quite similar to the technological fix disfavored by many here. I have worked in medical settings and observed the process of obtaining consent for risky procedures become routine. I am skeptical that giving children greater authority will become routine, co-opted by the managerial technology of contemporary medicine. Alderson presents some data suggesting that children can make competent medical decisions but I find it hard to believe that children will be more resistant to the appeal of technological solutions than adults. The children and young adults I teach and observe are natives of the country of technologically altered appearances while their parents are immigrants to that country.
Paul Steven Miller suggests a practical alternative I think is less easily co-opted. He thinks affected adults should be brought into medical decision-making for affected children, so that parents would be more likely to hear the advice of people who were satisfied living without appearance-altering surgeries or were ambivalent about it. The effect of incorporating the perspectives of affected adults in medical decision-making would be that medical professionals and parents who have not experienced the condition would not be the sole providers of information and advice to parents and children deciding about appearance-normalizing surgery. Affected adults have experience of the condition that has epistemic authority.
Concepts of Disability and Effects of Surgical Intervention
One of the issues addressed throughout the collection is the uncertainty about the effectiveness of surgical intervention to influence psychological, social and economic outcomes. The uncertainty is partly due to the practical problem of lack of data. After all, these are uncommon conditions and the outcome to be studied is something close to lifetime well-being, making potential studies costly. Even for cleft lip and palate, the most common of the three conditions considered, Marsh and Mouridian report only anecdotal outcomes and report the absence of systematic studies. The uncertainty about the effectiveness of surgical intervention is also due to a deeper theoretical problem. It is not clear what criteria of effective outcomes should be. For each of the conditions studied, many who undergo appearance-normalizing surgery report significant ambivalence about pain, lost mobility, lost periods of childhood recovering from surgery, and no or reduced ability to experience sexual pleasure in cases of surgery for ambiguous genitalia.
Beyond uncertainty due to little data and uncertainty due to unclear criteria of effectiveness, the essays in this collection raise important issues about the concept of the normal and the value of normal appearance. The authors who are affected persons and advocates rather than medical professionals evince serious ambivalence of the value of normal appearance, and many go further than ambivalence, to reject normal appearance as a value at all, promoting and advocating the value of difference. These authors raise this issue forcefully and articulately. There are some slips here, as when Miller states that disability is a social construct, as if asserting a fact rather than the disputed theory that it is. But over all, the essays by Miller, Kittay, Hedley, and Franks provide material for thought about the ease with which non-affected persons assume persons affected with a condition resulting in non-normal appearance wants to look normal.
Readership and Utility
The intended readership for this book is not clear to me. On the one hand, there is more advocacy than I would want in an anthology for classroom use. It could be helpful as a secondary text in courses on medical ethics, disability studies, and for specialized courses for health care professionals.
© 2006 Robert L. Muhlnickel
Robert L. Muhlnickel, MSW, has been a clinician and teacher in the University of Rcohester Department of Psychiatry and is completing his Ph.D. dissertation in Philosophy at the University of Rochester. He also works on a grant training clinicians in evidence-based family practices for people with serious and persistent mental illness, co-sponsored by the NYS Office of Mental Health and University of Rochester Medical Center.