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For many years, I have wracked mybrains trying to find the best wayto discuss the cultural and ethical

aspects of new developments in medi-cine and biotechnology. My favorite ex-ample is the cosmetic surgery “boom”and the endless proliferation of newtechniques for surgically altering the ap-pearance of the body. I have discoveredthat my audiences (students, colleagues,the general public) tend to respond tothe expansion of cosmetic surgery inone of two ways. One group, while ex-pressing some uneasiness about the cul-tural aspects of surgically reshaping thehuman body, tends to frame the ethicsof cosmetic surgery as a matter of choiceand informed consent. As long as the in-dividual has sufficient information, sheshould be free to make her own deci-sion. A second group takes a much lesssanguine approach, arguing that cos-metic surgery is dangerous, costly, anddemeaning to the individual and reflectsa pernicious transformation of ordinarybodies into objects for medical interven-tion. For this group, the only ethical re-sponse to cosmetic surgery is to “just sayno.”

While I see the merits of both ap-proaches, I am also constantly frustratedby what I see as a stubborn desire to set-tle the issue of cosmetic surgery onceand for all. Not only does cosmeticsurgery seem far too complex for easysolutions, but—and more important-ly—I suspect that part of this desire fora speedy resolution is born of our dis-comfort and unease with some of the

troubling normative issues that itevokes. This is why I welcomed the op-portunity to review three recent booksthat attempt to initiate a broader discus-sion of the cultural and ethical aspects ofmedical developments intended to en-hance the appearance and capacities ofthe human body.

All three books contain essays writtenby experts from different fields (medi-cine, philosophy, social sciences, hu-manities, law), as well as policy-makers,community activists, and patients. Theydeal with controversial medical inter-ventions: psychotropic drugs for chil-dren suffering from depression or hyper-activity (ADHD) and surgeries for nor-malizing bodies, particularly the bodiesof children (for example, conjoinedtwins, individuals with dwarfism, andchildren with ambiguous genitals orcraniofacial deformities). Each book ar-gues against viewing these interventionsin strictly medical terms—as when weask whether they achieve the desiredoutcome with a minimum of harm. In-stead, these books raise questions con-cerning what constitutes a “normal”body, as well as the social pressures toeliminate physical and mental markersof difference. They explore the unin-tended consequences of medical tech-nologies for normalizing different bod-ies. And they ask how we might engagein ethical discussions about embodieddifference and the role of medicine innormalizing the human body.

No Child Left Different takes a criticallook at the ubiquitous drugging of chil-

dren in the United States today. Pre-scriptions for psychotropic drugs forchildren have skyrocketed in the past fif-teen years. Currently one in ten white,middle-class, school-age U.S. boys takesthe stimulant Ritalin for attentiondeficit disorders (ADHD), and antide-pressants (Prozac, Paxil, Zoloft, and oth-ers) are being prescribed to 2.4 percentof all U.S. children, making them morefrequently prescribed than any other pe-diatric medication, including antibi-otics. These statistics are alarming, andthe authors of this volume—most ofwhom are child psychologists, psychia-trists, or pediatricians—are unanimous-ly concerned that drugs that were for-merly a treatment of last resort are nowbecoming the treatment of preference.

The desire for a “quick fix” for chil-dren’s behavioral problems not onlyleaves the social context in which theproblems emerged unaddressed, but itunderplays the side effects of the drugs,including children’s increased suscepti-bility to substance abuse later in life.The use of psychotropic drugs also at-tests to a widespread wish within theUnited States to eliminate quirky or ec-centric behaviors in children, homoge-nize different kinds of minds and per-sonalities, and shape children to fit thedemands of a society obsessed with per-formance at any cost. As one concernedpediatrician notes, we are in danger oflosing the “Pippi Longstockings” and“Tom Sawyers” who embody “the diver-

Rethinking “Normal”

by Kathy Davis

review

No Child Left Different. Ed. Sharon Olfman. Praeger Publishers, 2006.256 pages. Hardcover, $39.95.

Cutting to the Core: Exploring theEthics of Contested Surgeries. Ed.David Benatar. Rowman & Littlefield, 2006. 246 pages. Paperback, $24.95.

Surgically Shaping Children: Technology, Ethics, and the Pursuit ofNormality. Ed. Erik Parens. JohnsHopkins University Press, 2006. 274 pages. Hardcover, $50.00.

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sity of human nature that has made ourculture rich” (p. 161).

The authors of No Child Left Differ-ent differ in opinion as to whether U.S.children are really more likely to sufferfrom mental illness (due to toxins in theenvironment, a breakdown of caregivingrelations, or the destructive influence ofthe media), or whether children withbehavioral problems are more likely tobe labeled mentally ill by professionalsobsessed with the medical model. And,indeed, it was shocking to find that U.S.psychiatry has “discovered” (or manu-factured) more than four hundred newcategories of mental illness since the firstedition of the American Psychiatric As-sociation’s Diagnostic and StatisticalManual (DSM) was published in 1952.All authors are critical of the pharma-ceutical industry’s role in the rise of psy-chotropic drugs for children. The lack ofindependent drug research, the weaken-ing of the FDA’s role as watchdog, andthe emergence of managed care with itspreference for “quick fix” treatmentshave combined to make pills the treat-ment of choice for troubled children.Perhaps not surprisingly, many of theauthors who are themselves psycholo-gists lament the undermining of psy-chotherapy, which is much betterequipped in their view to help troubledchildren and their families.

Here I found No Child Left Differentdisappointing. While the book succeedsadmirably in alerting the reader to theproblems of psychotropic drugs for chil-dren, it focuses primarily on middle-class families who want their children toperform well in school and to displaythe cognitive and social skills that willallow them to lead successful lives. I donot see how a call for more “uncondi-tional love” and “consistent care” (p. 17)or family therapy might apply to themyriad behavior-disordered children liv-ing in poverty, single-parent homes, andviolent environments. Shouldn’t thedrugging of children refer not only tothe legal drugs, but also to the ubiqui-tous use of the illegal ones, such as crackand heroine, as well? While this bookraises many potentially relevant ethicalissues, the conversation ultimately seemsdirected at helping affluent parents and

practitioners discover new ways to helptheir children with behavior problems.The normative problem of difference,the role of medicine in normalizing be-havior, inequities in the distribution ofmedical care, and a cultural mentality ofperfection at all costs do not receive theattention that they deserve.

Cutting to the Core also takes a criticalstance toward the development of newmedical technologies—in this case, con-troversial surgeries. It contains a series ofessays, mostly written by philosophersand directed at surgeons, inviting themto critically reflect on their practices—or, as the editor puts it, the “practicesthat they have been avoiding” (p. x).The surgeries include genital circumci-sion (for boys and girls), sex reassign-ment surgery, the surgical separation ofconjoined twins, limb and face trans-plants, cosmetic surgery, and sham orplacebo surgery.

These surgeries are indeed controver-sial. For starters, most are unnecessary ina strict medical sense of the word andmay carry substantial risks for the healthand well-being of the patient. A sur-geon’s primary responsibility is to mini-mize harm to the patient, so risky proce-dures whose benefit is questionable pro-duce an ethical dilemma. The surgeriesdescribed in this volume are also contro-versial because they complicate the issueof consent. For example, children whoare conjoined, have ambiguous genitals,or suffer from dwarfism may be subject-ed to surgery before they are old enoughto make an informed decision. For surg-eries that are extremely painful and cancause serious problems later in life (forexample, genital surgery results in loss ofsensation, while leg lengthening resultsin decreased mobility), this is an issue ofethical significance.

But perhaps most importantly, thesesurgeries are controversial because theyinvolve altering differently embodied in-dividuals who are not troubled by theirbodies in order to make them more ac-ceptable to others or to “fit” norms ofappearance that are themselves problem-atic. Why, for example, should a shortperson who is perfectly capable of mov-ing around in the world be required toendure years of pain and discomfort in

order to add a few inches to her height?Or why should an individual sacrificehis or her capacity for sexual pleasure inorder to have genitals that are unam-biguously male or female? And whyshould conjoined twins be required tobe separate (become “autonomous indi-viduals”), when they, in fact, most oftenprefer to remain together?

This book does not provide easy an-swers. In fact, rather than look for an-swers, the reader is compelled to askquestions. For example, why is male cir-cumcision—a practice familiar to mostin the United States—almost universallycondoned, while female circumcision isroundly condemned as belonging to aset of “bizarre practices brought toAmerica by strange people practicingstrange customs” (p. 70)? The authorsdo not ignore the differences betweenthe two (genital circumcision of girlsoften does more damage and has morenegative repercussions than male cir-cumcision), but they caution us to ex-amine our own cultural blind spots andtake them into consideration whenmaking decisions about surgically alter-ing our children’s genitals. In a similarvein, they ask us to consider why and forwhom ambiguous genitals are a problembefore placing an intersexed child underthe surgeon’s knife. They also raise ques-tions about the use of “placebo surgery”in medical research. Is it acceptable tosacrifice the individual patient’s interestsfor the greater good to increase medicalknowledge? Or should we be looking forways to accept the limitations of medi-cine and to come to terms with thebody’s vulnerabilities?

What I liked most about this book isthat the authors consistently avoid tak-ing a stance for or against these contro-versial surgeries. They recognize the veryreal problems of stigmatization andsurgery’s promise to alleviate it, but theyalso consider that individuals who aredifferently embodied do not necessarilysee their difference as a problem. Theydeal sympathetically—but also critical-ly—with parents’ concerns for theirchild’s future. And, while none of theauthors rejects surgery out of hand, theyall agree that patients should make deci-sions about their own bodies whenever

46 H A S T I N G S C E N T E R R E P O R T May- June 2007

possible. Taken together, the essays inthis volume compel us to take surgeryoff its pedestal and realize its limitations.It cannot alleviate all the problems asso-ciated with differences in embodiment.It frequently causes considerable “collat-eral damage,” leaving the patient inworse shape than he was to begin with.And finally, it allows no space for indi-viduals who are differently embodied.

Although the book was written pri-marily with surgeons in mind and is ide-ally suited to help them reflect on theirown practices, its accessibility and open-ness to the contradictory realities of em-bodiment invite us all to think morecritically about what we expect surgeryto do for us and what the surgical elimi-nation of embodied differences wouldmean for our sense of who we are, ourinteractions with one another, and thequality of our social lives.

Surgically Shaping Children brings to-gether the themes of the other twobooks. It explores the ethical questionsthat arise when surgery is used to makechildren look more normal. In particu-lar, it deals with surgery for craniofacialabnormalities (cleft lip and palate), shortlimbs (achondroplasia or dwarfism), andfor ambiguous genitals (intersex condi-tions). The book is the outcome of oneof The Hastings Center’s projects, whichare well known for bringing together awide range of professionals, philoso-phers, and academics from the social sci-ences and humanities, consumer ac-tivists, policy-makers, and people whoare personally affected to converse aboutthe ethical aspects of various controver-sial subjects in the field of bioethics.These conversations—as anyone whohas had the privilege to participate canattest—are not intended to develop eth-ical guidelines (“logarithms”) for med-ical practice, but rather to stake outwhat needs to be talked about and startthe conversation (“beginning of the dayreflection”).

This particular project was a spin-offof several earlier projects on the ethics ofenhancement technologies and disabili-ty, and it continues the conversationsthat those earlier projects initiated. Sur-gically Shaping Children addresses thedisability community’s concerns about

the drawbacks of medical interventionsto normalize appearance. It looks forways to affirm differences rather thanpursue normality at any price. While theauthors in the volume all worry aboutequating differences with abnormalitiesor deformities, they do not propose astraightforward rejection of technologiesfor normalizing appearance, preferringinstead to consider the ramifications ofsocietal pressures to look “normal” uponindividuals’ identities, their interactionswith others, and their opportunities fora “good life.”

While the authors unanimously ad-vocate involving children in decisionsabout their own bodies, they generallyframe it as respecting the child’s bodilyintegrity, rather than as autonomy. Theydo not treat surgery as a personal choice,nor do they regard informed consent asthe primary ethical concern. Insteadthey explore ways in which interestedparties might be given an opportunity toreflect upon what is at stake with thesesurgeries. They also try to identify therequirements of a dialogue that wouldenable both children and parents to un-derstand children’s bodily differences;that would unravel the tension betweenparents’ obligations to shape their chil-dren and to allow their children to un-fold in their own way; and that wouldgive parents and children more resiliencyin negotiating social pressures to “fix”embodied differences through surgery.

In contrast to the other two books,Surgically Shaping Children opens bygiving the stage to individuals who actu-ally underwent surgery as children tomake them look more normal. Thisstrategy immediately makes clear whosebodies are being put under the knife andshows how surgeries may look very dif-ferent from the perspective of the personwho undergoes them.

Children who look different do notnecessarily want to look normal. As oneindividual puts it, “My entire identitywas connected to being a dwarf. I didnot view that fact as either good or bad . . . it just was” (p. 211). Moreover, thepain of surgery—a source of torment forparents contemplating surgery for theirchildren—is not the most salient con-cern for the child. Many of the authors

remember being more seriously affectedby the feeling of being ashamed of theirbodies and the necessity of keeping theirdifferences a secret from family mem-bers and friends. Indeed, the surgery it-self may cause more harm than good be-cause it communicates to the child thatshe is unlovable as she is. However, evenindividuals who wanted to have thesurgery stress the importance of know-ing that it was their own decision. Asone author with dwarfism writes, shefound it much easier to accept the painand being confined to a wheelchairwhen she knew that “I had brought my-self there . . . the decision was my own”(p. 34-35).

The authors also challenge underly-ing assumptions in ethical discussionsabout surgery for children. The tacit be-lief in the merits of technology (“If wecan do it, we should do it”) is confrontedwith the advantages—and sometimesnecessity—of leaving things as we findthem. One author suggests questioningconsumerism, which prompts us to seemedical professionals as first and fore-most responsible salespeople who shouldleave the choice of whether to havesurgery to their patient-consumers, andreplacing that concept with a more So-cratic ethics that considers how individ-ual choices affect others and the com-munities we live in.

Like the other books being reviewedhere, Surgically Shaping Children critical-ly engages with the culturally shaped de-sire for “normalcy,” but it provides atwist, asking what this desire is aboutand whether having a specific kind ofbody is necessary to feel “normal.” Thesereflections improve the kinds of discus-sions we can have about the surgicalnormalization of the differently embod-ied.

In addition to philosophical essays,the book provides the perspectives ofdifferent disciplines. Surgeons remind usthat not every surgery is the same. Cleftpalates are much more stigmatizing thanambiguous genitals, and cleft palatesurgery has proven more successful inachieving its goal than leg lengtheningor sex reassignment surgery. Social scien-tists stress that for many of these surg-eries, the social and psychological bene-

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fits have yet to be proven, and that moreempirical research is needed. Psycholo-gists argue for waiting until a child is oldenough to decide, mobilizing evidencefor children’s decision-making capabili-ties. Parents need support in teachingtheir children how to respond to cir-cumstances beyond their control; howto deal with a world that does not alwaysbend to our will and keep one’s self fromshattering when it doesn’t; and, aboveall, how to live with what cannot befixed. The book ends with a delightfullypractical essay from a well-known writerand disability activist that advises par-ents to take a deep breath after the initialshock of discovery that “something iswrong with their child” and give them-selves time to come to terms with it sothat they can help their child.

What I most liked about SurgicallyShaping Children was the way it drewme into an ongoing conversation thatexposed, interrogated, and rearticulatedmy common sense views on normalityand the role of medicine in normalizingthe differently embodied. While thisconversation has clearly just begun, thebook also clarified that, with some ef-fort, participants can reach at least someprovisional closure about some of themost difficult issues. For example, afterreading the book, accepting surgery forchildren without involving them in thedecision is very difficult. And yet, evenon this topic, complete consensus doesnot exist. While most of the authors areprepared to make an exception in thecase of primary cleft palate surgery onnewborns, one participant argues that

parents should wait until the child is oldenough to decide. This dissident viewwas presented appreciatively for, as theeditor put it, “common sense is easy tocome by; genuinely different ways oflooking at the world are not” (p. xxix).

Taken together, these books open amuch needed conversation about thecultural and ethical implications ofmedical interventions for normalizingindividuals. They demonstrate that sucha conversation requires multiple voices(including the voices of the differentlyembodied themselves), a willingness tothink critically about one’s cultural blindspots, and a commitment to engagingwith the unease that bodily difference,as well as the surgeries that eliminate it,evoke, rather than opting for the com-fort of the easy solution.