This letter was sent from Cheryl Chase, Exec. Dir., Intersex Society of North America to a judge in Columbia, South America.
7 February 1998
Mr. Rodrigo Uprimny
Corte Constitucional
Calle 72 No 7-96
Bogotá
COLOMBIA SOUTH AMERICA
Dear Mr. Uprimny,
Thank you for providing the opportunity to comment on this case. As I understand the case, physicians have asked for the Court to either approve performing genital surgery on a six year old intersexed child, or to wait and allow the child to make any decisions about surgery herself, when she is old enough to evaluate risks and benefits. Apparently the surgery contemplated is clitoral reduction, vaginoplasty (to create or deepen a vagina), or both. In a previous case regarding an emasculated boy, the Court determined that all choices involving sexual identity must be made directly by the person, and not by the parents.
We argue, in keeping with the Court's previous determination, that only the child has the right to make decisions regarding her sexual identity and cosmetic genital surgery. To impose surgery on her would subject her to an unnecessary risk of irreversible harm and violate her human rights.
During the past several years, there has been an explosion of new scholarly work which considers medical management of intersex children, and the surrounding psychosocial issues. Based upon that work, a growing consensus of surgeons, psychologists, psychiatrists, and ethicists argue against early genital surgery on intersex children (Diamond 1996; Diamond and Sigmundson 1997b; Dreger 1997a; Dreger 1998 forthcoming-a; Drescher 1997; Kessler 1998 forthcoming; Schober 1998). It would be a pity for the Court to create a precedent insulating doctors from any liability for harm caused by performing non-consensual genital surgery on children precisely at the moment when scholarly opinion is changing. It would be even more ironic for the Court at this moment to reverse its previous opinion, and negate the right of a child to make for herself all decisions regarding her sexual identity.
Given the fact that genital surgery is not medically necessary, that it is irreversible and potentially harmful, that there is growing controversy among medical intersex specialists, and that the child can always choose surgery if she wishes when she is old enough to give informed consent, to impose surgery now would violate the first principle of medicine: "Primum, non nocerum" (First, do no harm).
Please refer also to enclosed Declarations from Cheryl Chase (Director of the Intersex Society), Justine Schober M.D. (pediatric urological surgeon), Alice Dreger Ph.D. (narrative ethicist), and Lisset Barcellos Cardenas (a Peruvian woman subjected to nonconsensual genital surgery at age 12). All of these argue that cosmetic genital surgery should never be performed without the express informed consent of the patient. Also enclosed is a letter in the original Spanish from Ms. Barcellos to her doctor in Lima, insisting that this practice is harmful, unethical, and must be stopped.
1. There is no medical reason to reduce the size of a large clitoris. Large clitorises do not cause illness or pain. The sole motivation for the surgery is the unproven belief that it may enhance psychological well-being. There is no medical reason to create or deepen a vagina in a pre-pubescent child. The sole motivation for such surgery is the unproven belief that it may ease parental discomfort now or that the decision would be traumatic for the patient to make later, so the surgery should be performed before she is able to participate in the decision.
2. The surgery is irreversible. Tissue removed from the clitoris can never be restored; scarring produced by surgery can never be undone. Setting potential and speculative "psychological" benefits aside, there no medical advantage or benefit to performing surgery now as opposed to later, when the child can make her own choice and when her gender identity is clearly established. "Surgery makes parents and doctors comfortable, but counseling makes people comfortable too, and it is not irreversible" (Schober 1998, p20).
There are, in fact, clear medical benefits to delaying the surgery. When she is grown, her genitals will be larger and thus easier for a surgeon to work on. One reason for poor surgical outcomes may be that scar tissue is negatively affected by the changes in size and shape that accompany normal growth and pubertal development; surgery performed after puberty would avoid that risk. It is likely that surgical techniques will have improved by the time she has grown; waiting will allow her to benefit from advances in technology.
There are many documented cases of people with her history who lived as adult women and were happy to keep their large clitoris intact, in some cases actually refusing surgery when it was offered (Fausto-Sterling 1993; Young 1937).
There is clear documentation that a significant fraction of children with her specific medical condition and history develop a male gender identity, and live as men during adulthood. If she lives as a man, she will be grateful that surgery was not performed without her consent.
Physicians in this case have asserted that the child can never live as a man, because her penis is never going to be sexually functional. But sexual function may mean different things to different people. The boy in the previous case, who was accidentally emasculated, chose to live as a man even though he had lost his penis. The men investigated in (Reilly and Woodhouse 1989) were able to have satisfying lives as men, with no impairment of sexual function, with small penises that would be judged "inadequate" according to the medical protocols used on intersex children. A small penis is capable of providing sexual arousal, genital pleasure, and orgasm. The video tape "I Am What I Feel To Be" (Fama Film A.G. 1997) presents interviews in Spanish with a number of people who were born as male pseudo hermaphrodites, raised female, and later changed to live as men. Both they and their partners describe their lives as sexually fulfilling, in spite of penises so small that they lived as girls until puberty (Fama Film A.G. 1997).
3. There is considerable evidence that genital surgery can cause harm, including such physical harm as scarring, chronic pain, chronic irritation, reduction of sexual sensation, and psychological harm. Indeed, apart from the harm specific to genital surgery, surgery is never without risk.
4. No significant data has been collected on long term outcomes. The belief that these surgeries provide any benefit at all is speculative and unexamined. Given the clear risk of harm, the Court is obligated to protect the child's human rights by declining to approve the surgery.
5. The very fact that the physicians in this case hesitate to perform surgery before operating indicates that they are aware that the surgery is risky and may cause immediate or future harm.
6. Surgeons argue that genital surgeries must be performed on intersex children in order to save them from feeling different from other children, or being marginalized by society. But many children grow up with physical differences which may cause them to be marginalized by society, yet we do not advocate using plastic surgery to eliminate all physical differences. For instance, children of racial minorities are often marginalized, teased, and even subject to violence. Yet few would condone using non-consensual plastic surgery during infancy to eliminate racial characteristics.
Prejudice against people with unusual genitals is culturally determined. Some cultures have high regard for people with intersex genitals (Herdt 1994; Roscoe 1987). As even Dr. Maria New, a pediatric endocrinologist who advocates early genital surgery, concedes, our own culture was much less prejudiced before medical intervention began. [During the European Middle Ages and Renaissance,] "Hermaphrodites were integrated quite forthrightly into the social fabric" (New and Kitzinger 1993, p10).
But some surgeons who advocate early genital surgery for intersex infants might consider surgical elimination of racial characteristics potentially acceptable. Dr. Kenneth Glassberg, a surgeon who heads the Urology Section of the American Academy of Pediatrics, was interviewed on the national television news show NBC Dateline. He said that it was unrealistic to ask people to be accepting of genital difference, because many people are unaccepting of racial difference (Dateline 1997). Yet the law addresses the problem of racism by trying to mitigate the power of racists to harm members of racial minorities, rather than by trying to eliminate the physical characteristics which mark members of racial minorities.
Likewise, in this case, if there is intolerance of physical difference, then the intolerance should not be addressed by using medically unnecessary, irreversible, potentially harmful plastic surgery to try to hide the physical difference without the patient's consent. This is particularly true for a physical difference that is not visible to others in the course of normal social interaction.
7. There is good evidence that adults would not choose clitoral surgery for themselves. Psychologist Dr. Suzanne Kessler has documented this by surveying college students (Kessler 1997). There are many adult intersex women who express regret and anger that genital surgery was imposed on them as children.
8. Worldwide medical thinking about surgical management of intersexuality has been strongly influenced by a case in which a boy whose penis was accidentally destroyed during circumcision, and who after being surgically reassigned and raised female, was reported to have had a successful adjustment. However, it is now known that, like the previous case of accidental emasculation which the Court is considering, the female reassignment was a disaster (Diamond and Sigmundson 1997a). The patient now lives once again as a man, and reconsideration of this case is causing experts to assert that early genital surgery requires the informed consent of the patient (1997b; Diamond and Sigmundson 1997b; Dreger 1998 forthcoming-a). "I recommend that genital reconstruction be delayed until the individual is competent to decide for himself or herself how this should best be fashioned" (Diamond 1996). "This damage [due to surgery] may be something a patient is willing to risk, but that is a choice he/she should be able to make for him/herself" (Fausto-Sterling and Laurent 1994, p10).
9. A safer alternative is clearly available, and is endorsed by credible experts.
Sex researcher Milton Diamond of the University of Hawaii Medical School and psychiatrist Keith Sigmundson of the University of British Columbia, based upon their research of intersex management, provide clear recommendations for how doctors can best serve intersex children. They recommend that the parents' emotional difficulties about their child's intersexuality be treated by providing counseling for the parents, that ongoing counseling and honest information be provided to the intersex child in age-appropriate fashion as she grows, and that early genital surgery be avoided because it is irreversible and potentially harmful. "[The parents] desire as to sex of assignment is secondary. The child remains the patient." "Most intersex conditions can remain without any surgery at all. A woman with a phallus can enjoy her hypertrophied clitoris and so can her partner. Women with [intersex conditions] who have smaller-than-usual vaginas can be advised to use pressure dilation to fashion one to facilitate coitus; a woman with [an intersex condition] likewise can enjoy a large clitoris." "As the child matures there must be opportunity for private counseling sessions ... the counseling should ideally be done by those trained in sexual/gender/intersex matters" (Diamond and Sigmundson 1997b) .
Pediatric urology surgeon Dr. Justine Schober, in her review of clitoral reduction and vaginoplasty, concludes that "Surgery must be based on truthful disclosure and support decision-making by parents and patient. . . . Our ethical duty as surgeons is to do no harm and to serve the best interests of the patient" (Schober 1998).
Narrative ethicist Dr. Alice Dreger recommends that intersex patients be allowed to choose surgery only with full informed consent of the patient, and that counseling and peer support be made available to parents, family, and patient (Dreger 1997b).
10. Given the fact that genital surgery is not medically necessary, that it is irreversible and potentially harmful, that there is growing controversy among medical intersex specialists, and that the child can always choose surgery later if she wishes, to impose surgery now would violate the first principle of medicine: "Primum, non nocerum" (First, do no harm).
11. Many of the factors which determined the Court's decision in the case of the emasculated boy apply in exactly the same way in the present case. Just as in that case, there is no urgency to perform the surgery as evidenced by the fact that three years have now passed since the diagnosis and without surgery. Just as in that case, the child is unable to give the informed consent which is necessary before such an important and life-altering decision can be made for her. Just as in the previous case, there is no proof that this surgery would provide any benefit at all.
12. BOTH THE NUREMBERG CODE AND BASIC PRINCIPLES OF HUMAN RIGHTS LAW PROHIBIT SUBJECTING A CHILD TO INVOLUNTARY, IRREVERSIBLE, AND MEDICALLY UNNECESSARY GENITAL SURGERIES.
The sole purpose of these surgeries is to enhance the long-term psychological well-being of the patient. Yet there is no evidence that they do enhance the long-term psychological well-being of the patient, there is no data which assures that they preserve sexual sensitivity and orgasmic function, and considerable data implies that they may actually harm the long-term psychological well-being of the patient. Therefore, although these surgeries have been performed for many years, with numerous refinements of technique, and are considered by many surgeons to be standard practice, in pragmatic terms they should be considered experimental techniques which must not be imposed without the patient's full informed consent.
The Charter and the Judgment of the International Military Tribunal (IMT), collectively titled the Nuremberg Code, carry the weight of binding international law. See History of the United Nations War Crimes Commission and the Development of the Laws of War (1948) and Affirmation of the Principles of International Law Recognized by the Charter of the Nuremberg Tribunal, 1946-1947 U.N.Y.B. 54, U.N. Sales No. 1947.I.18. The very first trials held by the IMT at Nuremberg concerned the use of medical practices on unwilling subjects. The medical trials at Nuremberg in 1947 deeply impressed upon the world that medical intervention on unconsenting human subjects is morally and legally repugnant.
The Tribunal classified the commission of experimental medical practices without the consent of the patient both as war crimes and as crimes against humanity. See History of the United Nations War Crimes Commission and the Development of the Laws of War 333-334 (1948). The first principle of the Nuremberg Code provides the patient/subject with the right of informed consent: "The voluntary consent of the human subject is absolutely essential. This means that the peson involved should have legal capacity to give consent; should be so situtated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint of coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision." 2 Trials of War Criminals Before the Nuremberg Military Tribunals under Control Council Law No. 10, at 181-82 (1949). See also the Helsinki Declaration, adopted by the World Medical Association in 1964 (recognizing the principle of informed consent and the right to be free from involuntary medical intervention.)
The prohibition on involuntary medical intervention and the requirement of informed consent are absolute; the Nuremberg Code governs therapeutic research that is intended to directly benefit or provide effective medical therapy for the research subjects, as well as nontherapeutic research concerned with the discovery of data. (See previous citation.)
The Nuremberg Code prohibits involuntary surgical procedures designed to alter the genitals of a six year old child for purely esthetic as opposed to medically necessary reasons. As discussed in more detail in the preceding sections, these surgeries are plainly experimental: (1) They are not medically necessary to alleviate pain or any physiological dysfunction. (2) There is no medical consensus that these procedures are advisable or beneficial. On the contrary, there is growing concern over the efficacy and ethics of these procedures among medical experts in many fields. (3) There are no outcome studies to support the hypothesis that these painful, invasive, and irreversible surgical procedures result in any psychosocial benefit to the child or enhance the child's well-being in any way. Conversely, an increasing number of adults who were forced to undergo these procedures as children are coming forward to report profound physical and psychological harm, including pain, scarring, urological problems, loss of sexual sensation and functioning, and severe emotional trauma. (See Declaration of Lisset Barcellos Cardenas.)
The fundamental human right to be free of involuntary medical experimentation is especially clear and compelling under the circumstances of this case, which involves a six year old child who is incapable of providing informed consent. Although parents have the right to consent to medical treatments on behalf of a minor child under ordinary circumstances, this right does not apply (1) when the medical treatment is not necessary to alleviate illness or pain; (2) when the only rationale for the treatment is speculative and purely psychosocial, i.e., to alleviate the possibility of social stigma by physically altering a child's genitals to more closely conform to a cultural stereotype or ideal; (3) when the procedures involved are irreversible, painful, and may result in profound physical and/or emotional harm; and (4) where the irreversible outcome of the procedures will deprive the child of her right to determine her own sexual identity when she is old enough to choose.
It is repugnant and contrary to a child's basic human rights to allow a parent to consent to medically unnecessary genital surgery for the purpose of dictating the child's future gender identity or of altering the child's body to conform to an idealized cultural notion of "normal" genital appearance. This principle has been established in the analogous context of female genital mutilation, where a wide variety of human rights authorities and organizations have determined that involuntary genital surgery performed on female children violates basic human rights to bodily integrity and personal dignity and autonomy. See Amnesty International, Women's Rights are Human Rights (1995).
Many human rights bodies have condemned female genital mutilation, defined as the removal of all or part of the clitoris, inner labia, or outer labia. "Feminizing genital surgery" reduces the size of the clitoris by removing parts of the clitoris. (An earlier surgical technique which buried the clitoris has been abandoned because it results in pain upon genital arousal.) Clitoral reduction surgery is thus clearly covered by the definition of female genital mutilation. Female genital mutilation has been condemned by the United Nations Commission on Human Rights, UNICEF, the World Medical Association, the World Health Organization, the 1993 United Nations World Conference on Human Rights, and numerous non-governmental organizations. See especially the Minority Rights Group International, Female Genital Mutilation: Proposals for Change (1992): "While an adult woman is quite free to submit herself to a ritual or tradition, a child has no formed judgment and does not consent, but simply undergoes the operation while she is totally vulnerable."
There is no guarantee that the child will have a female gender identity as an adult. As discussed above, a significant fraction of children with her specific medical condition and history have a male gender identity as adults. If the child grows up to have a male gender identity, then the surgeries that the doctors seek to perform will have been a terrible mistake. Moreover, even if her adult gender identity is female, there is no guarantee that she will not regret any genital surgeries that were performed without her consent as a child especially given the uncertain outcome of current surgical techniques. Given the deeply personal and irreversible nature of genital surgeries, the child herself is the only person who has the right to weigh the risks and to decide what kind of genital alterations, if any, she would like to undergo.
Parents have considerable legal control over their children, but they do not have the right to disregard the child's intrinsic human rights to privacy, dignity, autonomy, and physical integrity by altering a child's genitals through irreversible surgeries based on an unproven and controversial psychosocial rationale. See, for example, the American Convention on Human Rights, Article 1 (stating that "every human being" is entitled to the rights and freedoms recognized in the Convention); Article 5 (recognizing the right to "physical, mental, and moral integrity"); Article 11 (recognizing the right to privacy); and Article 19 (stating that "every minor child has the right to the measures of protection required by his condition as a minor on the part of his family, society, and the state"). See, for example, United Nations Convention on the Rights of the Child (signed by Colombia 26 January 1990, ratified 28 January 1991), Article 19 (requiring all states "to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation . . . while in the care of parent(s), legal guardian(s) or any other person who has the care of the child"); and Article 37 (requiring all states to ensure that "no child shall be subjected to torture or other cruel, inhuman or degrading treatment").
Summary
Therefore, we urge the Court not to approve the surgery, as a violation of the child's human rights as previously ruled by this Court and as guaranteed by international law, and specifically not to indemnify physicians against liability for what they obviously regard as a questionable procedure with a significant likelihood of resulting in regret, anger, and motivation to seek legal redress as the patient grows up and is able to take legal action on her own behalf.
Yours Truly,
Cheryl Chase
Executive Director, ISNA
PS: You specifically asked for a copy of the article "The Five Sexes," by Dr. Anne Fausto-Sterling. I have enclosed that article, but I would like to emphasize that, though the article is titled "Five Sexes," neither Dr. Fausto-Sterling nor I nor ISNA is suggesting that there are actually five sexes. Dr. Fausto-Sterling and ISNA support the recommendations of (Diamond and Sigmundson 1997b). In the current case, those recommendations indicate that the child should continue to be raised as a girl, but that no genital surgery be done unless at her own initiative and with her informed consent.
Appendix A
Feminizing Genital Surgery is Medically Unnecessary
"Our needs and the needs of the parents to have a presentable child can be satisfied. We argue that surgery in an infant maximizes a child's social adjustment and acceptance by the family. But do we truly realize and promote the best interest of the adult patient in terms of psychosocial outcomes? This knowledge is still obscure and much remains to be discovered" (Schober 1998, p19).
"The only indication for performing this surgery [clitoral reduction] has been to improve the body image of these children so that they feel 'more normal'" (Edgerton 1993).
"Scientific dogma has held fast to the assumption that without medical care hermaphrodites are doomed to a life of misery. Yet there are few empirical studies to back up that assumption, and some of the same research gathered to build a case for medical treatment contradicts it" (Fausto-Sterling 1993).
"The major justification for early surgery is the belief that children will suffer terrible psychological damage if they and those around them are not crystal clear about which sex they belong to. Surgically altering ambiguous genitalia is seen as an important component of clarifying the situation initially for family and friends, and as the child becomes conscious of his or her surroundings, for the child as well" (Fausto-Sterling and Laurent 1994, p8).
Hopkins surgeons justify early genital surgery because it "relieves parental anxiety about the child with relatives and friends" (Oesterling, Gearhart, and Jeffs 1987, p1081).
"For a small infant, the initial objective is to feminize the baby to make it acceptable to the parents and family" (Hendren and Atala 1995, p94).
"Although gender assignment by genital surgery reassures adults, it does not necessarily require surgery, based on anecdotal reports of untreated patients" (Drescher 1997).
<hrdata-mce-alt="Page 5" class="system-pagebreak" title="Feminizing Genital Surgery" />
Appendix B
Long Term Outcomes of Feminizing Genital Surgery are Unknown
These surgeries have been widely practiced since the late 1950s. During that time there has been a disturbing lack of follow-up. Because it is not known whether these surgeries enhance psychological well-being, which is their sole legitimate purpose, these surgeries must be considered experimental.
In her forthcoming review of feminizing genital surgeries, pediatric urological surgeon Dr. Justine Schober notes that, "The psychosocial long-term outcomes represent the most necessary information to determine if we are successful in treating intersexual patients. However, in conditions other than congenital adrenal hyperplasia, outcomes are generally unavailable" (Schober 1998, p20).
In a forthcoming book, Dr. Suzanne Kessler, professor of Psychology at the State University of New York at Purchase, presents results from her ten year investigation of medical management of intersexuality. She notes that "Surprisingly, in spite of the thousands of genital operations performed every year, there are no meta-analyses from within the medical community on levels of success." "Even recent reports are susceptible to a criticism about vagueness: The clitoroplasty is a `relatively simple procedure that gave very good cosmetic results . . . and quite satisfactory results.' The reader searches in vain for any assessment by which that was determined." "In none of the follow-up studies is there any indication that a criterion for success includes the intersexed adult's reflection on his or her surgery" (Kessler 1998 forthcoming, p106-7).
Dr. William Reiner, who switched in mid-career from urological surgeon to pediatric psychiatrist, notes that "Past decisions about gender identity and sex reassignment when genitalia are greatly abnormal have by necessity occurred in a relative vacuum because of inadequate scientific data" (Reiner 1997a, p224).
Brown University Professor of Medicine Dr. Anne Fausto-Sterling, in her review of every case study located (in English, French, and German) on feminizing genital surgeries from the 1950s through 1994, concludes that "these standard treatment procedures are not based in careful clinical analysis"(Fausto-Sterling and Laurent 1994, p1).
"Long term results of operations that eliminate erectile tissue [that is, clitoral reduction surgery] are yet to be systematically evaluated" (Newman, Randolph, and Parson 1992).
Pediatric urologist Dr. David Thomas of the University of Leeds, addressing the American Academy of Pediatrics in late 1996, noted that very few studies have been done to gauge the long-term results of early feminizing surgery, and the psychological issues "are poorly researched and understood" (1997a).
Hopkins Pediatric urological surgeon Robert Jeffs, reacting to picketers demonstrating against early genital surgeries at a 1996 Boston meeting of the American Academy of Pediatrics, conceded to a journalist that he has no way of knowing what happens to patients after he performs surgery on them. "Whether they are silent and happy or silent and unhappy, I don't know" (Barry 1996).
"Although these procedures have been performed for decades, no controlled studies have compared the adaptations of children who had surgery to those who did not. Anecdotal reports [that is, reports of former patients including intersex activists] carry much weight in an area in which data on long-term outcomes are sparse" (Drescher 1997).
The very fact that, in the current case, physicians hesitate to proceed without the approval of the Court, is evidence that they consider the procedure risky and likely to motivate the patient to later litigation.
Appendix C
Feminizing Genital Surgery Can Cause Harm
There is a wealth of evidence that these surgeries can cause profound physical and emotional harm.
See the attached Declaration of Lisset Barcellos Cardenas, which describes reduced sexual sensation, chronic irritation and bleeding, and abnormal appearance after cosmetic genital surgery imposed without her consent in Lima Peru in approximately 1981. Ms. Barcellos would be happy to address the Court, in her native Spanish, on the ways in which surgery has decreased her quality of life and her belief that these surgeries should never be imposed on unconsenting children.
Dr. Anne Fausto-Sterling documents scarring, pain, multiple surgeries, and patient or parental refusal of additional surgeries as evidence that surgery does actual harm (Fausto-Sterling and Laurent 1994,p5).
In a recent review of a dozen girls aged 11 to 15 who had undergone clitoroplasty and vaginoplasty, Dr. David Thomas concluded "The results are indifferent and, frankly, disappointing" with reconstructions showing visibly different appearance from the original cosmetic result, clitorises withered and obviously nonfunctional, and "every girl required some additional vaginal surgery"(1997a).
Angela Moreno, who was subjected to modern clitoroplasty by experienced surgeons in 1985, recounts that the surgery destroyed her orgasmic function (Chase 1997, p12).
"Surgical reduction of an enlarged clitoris can at times damage sensation and thus reduce orgasmic potential and genital pleasure and, like ablation of the testes, is irreversible" (Reiner 1997b, p1045).
"Aside from reducing potential adult genital sensitivity, [clitoral reductions] neglect the significance of any behavioral or psychological predisposition toward the individual's own preferred sexual identity or gender roles" (Diamond 1996, p143).
Sex therapist Dr. H. Martin Malin discusses patients who had been subjected to early genital surgeries. "[their conditions, such as micropenis or clitoral hypertrophy] were not life-threatening or seriously debilitating. . . . [T]hey were told that they had vaginoplasties or clitorectomies because of the serious psychological consequences they would have suffered if surgery had not been done. But the surgeries had been performed and they were reporting long-standing psychological distress" quoted in (Schober 1998).
"[S]urgery not only risked problems in psychological adjustment, but also can permanently damage the individual's ability to achieve orgasmic sexual function. This damage may be something a patient is willing to risk, but that is a choice he/she should be able to make for him/herself" (Fausto-Sterling and Laurent 1994, p10).
Hopkins surgeons Oesterling, Gearhart, et al have recently acknowledged in the Journal of Urology that the most modern clitoral surgery "does not guarantee normal adult sexual function" (Chase 1996).
<hrdata-mce-alt="Page 6" class="system-pagebreak" title="Genital Surgery" />
Appendix D
Women can be well adjusted with large clitorises
There is no evidence that these surgeries are required for healthy psychosocial development. Indeed, there are many counterexamples, of people who lived or are living happily without surgery.
Historian Alice Dreger has documented many male pseudo hermaphrodites who lived happily as women during the 19th century with atypical genitals intact (Dreger 1998 forthcoming-b).
Anne Fausto-Sterling documents 70 cases of children who grew up with ambiguous genitalia, most of whom seem to have developed ways of coping with their anatomical difference (Fausto-Sterling and Laurent 1994).
Hopkins surgeon Hugh Hampton Young documents a number of women with large clitorises who were sexually active and who rejected his offers of surgical correction (Fausto-Sterling 1993; Young 1937).
The video, Hermaphrodites Speak!, contains an interview (at 24:35 on the tape) with Hida Viloria, a young woman who discusses in a video interview how happy she is to have been able to keep her large clitoris intact (ISNA 1997).
Eli Nevada also discusses her relief at having escaped genital surgery (Nevada 1995).
"Despite a large clitoris [this patient] does not wish any [surgical] modifications to be made" (Patil and Hixson 1992).
Appendix E
Some male intersexuals raised female switch to male sex role
There is evidence that some male pseudo-hermaphrodites, even if raised female, even if subjected to genital surgery, and in spite of having an "inadequate" penis, will change sex role during adolescence or early adulthood, living as men rather than as women.
Money found that three (10%) of 23 patients who were male pseudo- hermaphrodites raised female switched to living as men as adults (Money, Devore, and Norman 1986). Dr. Howard Devore, a co-author of this study, is a clinical psychotherapist with extensive experience in assisting intersexual patients and parents of intersexual children. Dr. Devore is an outspoken opponent of early genital surgery and a member of ISNA's advisory board.
"In fact, present data is increasing that despite great care in rearing these [male pseudo hermaphrodites] as females, some, or perhaps many of them, have strong male tendencies or may even change their assigned sex when they reach 12 to 14 years of age" (Reiner 1997a, p224). Dr. Reiner is engaged in a prospective investigation of fifteen male pseudo hermaphrodites assigned and raised female, with early genital surgery. To date, two out of the seven who have reached adolescence have declared themselves male. The other eight are too young yet for any assessment (1997b). Reiner reports a similar case, without prospective investigation, in (Reiner 1996).
Even female pseudo-hermaphrodites assigned and reared female, with early genital surgery, are considerably likely to switch to living as men as adults (Meyer-Bahlburg et al. 1996).
The video tape "I Am What I Feel To Be" (Fama Film A.G. 1997) presents interviews in Spanish with a number of people who were born as male pseudo hermaphrodites, raised female, and later switched to live as men (Fama Film A.G. 1997).
Appendix F
Men can be well adjusted with small penises
Surgeons Justine Schober M.D. (neé Reilly) and C R J Woodhouse M.D. interviewed 20 patients who were diagnosed in infancy with micropenis. Twelve of these patients were adults (17 years of age or older) at the time of the interview. All had stretched penis length smaller than the 10th percentile one was only 4 cm (erect penis length cannot exceed stretched flaccid penis length). "The group appears to form close and long-lasting relationships. They often attribute partner sexual satisfaction and the stability of their relationships to their need to make extra effort including nonpenetrating techniques. . . . The small penis has not deferred them from a male sexual role. [Nine of twelve of the adult patients] are already sexually active. . . . Vaginal penetration usually is possible but adjustment of position or technique may be necessary. . . . Two main conclusions may be drawn from our series: a small penis does not preclude normal male role and a micropenis or microphallus alone should not dictate a female gender assignment in infancy" (Reilly and Woodhouse 1989).
"My own experience is that men with the smallest and most deformed penis can have a satisfying relationship with their partner" (Woodhouse 1994).
The video tape "I Am What I Feel To Be" (Fama Film A.G. 1997) presents interviews in Spanish with a number of people who were born as male pseudo hermaphrodites, raised female, and later changed to live as men. Both they and their partners describe their lives as sexually fulfilling, in spite of penises so small that until puberty they were considered to be girls (Fama Film A.G. 1997).
Appendix G
Most adult women would not choose clitoral surgery for themselves
Dr. Suzanne Kessler, professor of psychology at the State University of New York, surveyed college women on their feelings about clitoral surgery.
The women were asked: "Suppose you had been born with a larger than normal clitoris and it would remain larger than normal as you grew to adulthood. Assuming that the physicians recommended surgically reducing your clitoris, under what circumstances would you have wanted your parents to give them permission to do it?" ... All the subjects were shown a scale with the normal ranges for clitorises and penises demonstrated in actual size, and labeled in centimeters..."
"About a fourth of the women indicated they would not have wanted a clitoral reduction under any circumstance. About half would have wanted their clitoris reduced only if the larger than normal clitoris caused health problems. Size, for them, was not a factor. The remaining fourth of the sample could imagine wanting their clitoris reduced if it were larger than normal, but only if having the surgery would not have resulted in a reduction in pleasurable sensitivity. Only one woman mentioned that other people's comments about the size of her clitoris might be a factor in her decision" (Kessler 1997, p35).
There is a wealth of literature available in which adults who were subjected to non-consensual cosmetic genital surgery as children express grief over the physical and emotional suffering caused by the surgery, and anger toward doctors who performed the surgery and parents who gave permission (Chase 1997; ISNA 1997). To date, no adult has come forth to say that she was grateful for having had this surgery performed without her consent.
Appendix H
Response to Doctors' Questions
1. Our recommendations are informed by academic research.
For example, our recommendations are in concordance with those of the following respected academic researchers:
Justine Schober M.D.
Pediatric Urologist
Hamot Medical Center
Anne Fausto-Sterling Ph.D.
Professor of Medical Science
Brown University
Milton Diamond Ph.D.
Professor of Psychology
University of Hawaii School of Medicine
Kieth Sigmundson M.D.
Department of Psychiatry
University of British Columbia
Suzanne Kessler Ph.D.
Professor of Psychology
State University of New York at Purchase
Alice Dreger Ph.D.
Adjunct Professor
Center for Ethics
Michigan State University
Howard Devore Ph.D.
Life Clinical Fellow
American Academy of Clinical Sexologists
2. ISNA performs research.
We are currently engaged, with the assistance of Aron Sousa, M.D. and Justine Schober, M.D., in a project which will use the new "Evidence Based Medicine" methodology to analyze all available published outcome data on intersex medical interventions. We are also engaged in a project, with the assistance of Justine Schober, M.D., to gauge the psychological adjustment of intersex adults, using a structured survey instrument.
3. Our recommendations are not based only upon technical limitations of older surgeries.
There is no evidence that "newer" surgeries preserve sensation or function. Indeed, because the surgery involves deep dissection and removal of highly innervated and vascular tissue, it is literally impossible for sensation to be unaffected. Outcome data from surgeries using similar microsurgical techniques for reconstruction after trauma in adults (for example, facial reconstruction, or transfer of a toe to replace an amputated finger) indicate that sensation is typically greatly reduced, but may be altered in character, or even painful.
Several people have come forward, whose surgery was performed during adolescence, and who are now young adults. Thus, they provide good information about surgical outcomes of only a decade ago. They report that surgery either greatly reduced or eliminated clitoral sensation, or left them with chronic pain. In some cases the pain did not develop until many years later.
Surgery inflicts emotional harm, by legitimating the idea that the child is not lovable unless "fixed" with plastic surgery that is medically unnecessary and carries great risks. Some individuals subjected to old style clitorectomy surgery were lucky enough to retain sensation. They find themselves no less emotionally harmed by the surgery. For examples, see (Coventry 1997; Coventry 1998; Holmes 1997) and the letter from Lisset Barcellos Cardenas to her physician in Lima.
Surgeons claiming to be developing the newest techniques concede that they have no proof that surgery does not damage sexual function. The published response of authors Oesterling, Gearhart, and Jeffs to (Chase 1996) concedes that their technique "does not guarantee normal adult sexual function."
There is even some evidence that the newer surgeries may be more harmful than the older ones. All of the cases of chronic genital pain that we are aware of are in patients who were subjected to "modern clitoroplasty" rather than older style clitorectomy.
4. Our recommendations represent the views of a large number of intersex people and the growing consensus of professionals in many disciplines.
ISNA maintains a mailing list currently numbering 1000 people. Of those, approximately 250 have told us that they, or a child, or a spouse is intersexed.
In the past several years there has been a world-wide explosion of intersex activism, with groups representing both intersex people and parents of intersex patients in many countries. See the Fall 1997 issue of the newsletter Hermaphrodites with Attitude for news from intersex patient-advocacy movements in New Zealand and Japan. The following are among the intersex patient-advocacy groups which criticize current medical protocols:
Intersex Society of North America
Ambiguous Genitalia Support Network (USA)
Hermaphrodite Education and Listening Post (USA)
Middlesex Group (USA)
Androgen Insensitivity Support Group (USA, UK, Canada, Germany, Holland, Australia)
Congenital Adrenal Hyperplasia Support Network (USA)
Intersex Society of Canada
Intersex Society of New Zealand
Peer Support for Intersexuals PESFIS (Japan)
Genital Mutilation Survivor's Support Network (Germany)
Workgroup on Violence in Pediatrics and Gynecology (Germany)
5. To date, no intersex person who was subjected to early surgery has come forth to say that the views expressed by these intersex patient advocacy groups are not representative, or to say that they believe genital surgery should be performed on intersex children.
6. Surgery cannot prevent psychological problems.
Indeed, in many cases it is clear that surgery itself is the cause of psychological problems. However, even if there were some former patients who felt that they were helped by early genital surgery, we would still argue that non-consensual genital surgery on infants is unethical, because so many people are harmed.
7. Surgery does not provide "normal" looking genitals.
In a recent review of a dozen girls aged 11 to 15 who had undergone clitoroplasty and vaginoplasty, Dr. David Thomas concluded "The results are indifferent and, frankly, disappointing" with reconstructions showing visibly different appearance from the original cosmetic result, clitorises withered and obviously nonfunctional, and "every girl required some additional vaginal surgery." (1997a; Scheck 1997). Even surgeries performed by leading experts had poor outcomes: "Dr. Thomas pointed out that 70% of the original surgeries had been performed by full-time pediatric urologists in three specialist centers" (1997a).
8. Surgery does not prevent emotional suffering.
In fact, there is evidence that it causes emotional suffering. "Many intersexuals report that the very treatments designed to prevent them from feeling like shameful freaks are in fact causing them to feel that way" (Dreger 1997a). "Children born as intersexes face psychological difficulties no matter what treatment choice is made, and sophisticated on-going counseling for both parent and child must certainly become, where it is not already, the central component of the treatment process" (Fausto-Sterling and Laurent 1994, p 8).
next:Trauma
References
1997a. Is early vaginal reconstruction wrong for some intersex girls? Urology Times (International Medical News), February, 10-12. (Enclosed: See Tab D)
1997b. The Pediatric Forum (letters). Archives of Pediatric and Adolescent Medicine 151:1062-64. (Enclosed: See Tab E)
Barry, Ellen. 1996. United States of Ambiguity. The Boston Phoenix (Styles section), 22 November, 6-8. (Enclosed: See Tab F)
Chase, Cheryl. 1996. Re: Measurement of Evoked Potentials during Feminizing Genitoplasty: Techniques and Applications (letter). Journal of Urology 156 (3):1139-1140. (Enclosed: See Tab G)
Chase, Cheryl. 1997. Special issue on intersexuality. Chrysalis: The Journal of Transgressive Gender Identities, fall. (Enclosed: See Tab H)
Coventry, Martha. 1997. Finding the words. Chrysalis: The Journal of Transgressive Gender Identities. (Enclosed: See Tab H)
Coventry, Martha. 1998. On Early Surgery. (Enclosed: See Tab I)
Dateline. 1997. NBC Dateline: Gender Limbo. New York: NBC. national broadcast television show. 17 June.
Diamond, Milton. 1996. Prenatal disposition and the clinical management of some pediatric conditions. Journal of sex and marital therapy 22 (3):139-147. (Enclosed: See Tab J)
Diamond, Milton, and HK Sigmundson. 1997a. Sex Reassignment at Birth: A Long Term Review and Clinical Implications. Archives of Pediatric and Adolescent Medicine 150:298-304.
Diamond, Milton, and H. Keith Sigmundson. 1997b. Commentary: Management of Intersexuality: Guidelines for dealing with persons with ambiguous genitalia. Archives of Pediatrics and Adolescent Medicine 151:1046-1050. (Enclosed: See Tab K)
Dreger, Alice Domurat. 1997a. Ethical problems in intersex treatment. Medical Humanities Report (Center for Ethics and Humanities in the Life Sciences, Michigan State University) 1:1+4-6. (Enclosed: See Tab L)
Dreger, Alice Domurat. 1997b. Listening to Hermaphrodites: Ethical Challenges to the Medical Treatment of Intersexuality. East Lansing Michigan: Center for Ethics and Humanities in the Life Sciences. (Enclosed: See Tab M)
Dreger, Alice Domurat. 1998 forthcoming-a. Ethical Issues in the Medical Treatment of Intersexuality and "Ambiguous Sex". Hastings Center Report. (Enclosed: See Tab N)
Dreger, Alice Domurat. 1998 forthcoming-b. Hermaphrodites and the Medical Invention of Sex. Cambridge: Harvard University Press. (Enclosed: See Tab O)
Drescher, Jack. 1997. Spare the knife, study the child. Ob.Gyn.News, 1 October, 14. (Enclosed: See Tab P)
Edgerton, Milton T. 1993. Discussion: Clitoroplasty for Clitoromegaly due to Adrenogenital Syndrome without Loss of Sensitivity (by Nobuyuki Sagehashi). Plastic and Reconstructive Surgery 91 (5):956.
Fama Film A.G. 1997. I am what I feel to be (Guevote). Berne Switzerland: Fama Film A.G. video. (Enclosed)
Fausto-Sterling, Anne. 1993. The Five Sexes: Why Male and Female are not Enough. The Sciences 33 (2):20-25. (Enclosed: See Tab Q)
Fausto-Sterling, Anne, and Bo Laurent. 1994. Early genital surgery on intersexual children: A re-evaluation. (Enclosed: See Tab R)
Hendren, W. Hardy, and Anthony Atala. 1995. Repair of high vagina in girls with severely masculinized anatomy from the adrenogenital syndrome. Journal of Pediatric Surgery 30 (1):91-94.
Herdt, Gilbert, ed. 1994. Third Sex, Third Gender: Beyond Sexual Dimorphism in Culture and History. New York: Zone Books.
Holmes, Morgan. 1997. Is Growing Up in Silence Better than Growing Up Different? Chrysalis, Fall, 7-9. (Enclosed: See Tab H)
ISNA. 1997. Hermaphrodites Speak! San Francisco: ISNA. video. (Enclosed)
Kessler, Suzanne. 1997. Meanings of Genital Variability. (forthcoming in) Chrysalis: The Journal of Transgressive Gender Identities 2 (5):33-38. (Enclosed: See Tab H)
Kessler, Suzanne. 1998 forthcoming. Lessons from the Intersexed: Rutgers University Press. (Chapter Four Enclosed: See Tab T)
Meyer-Bahlburg, Heino, Rhoda S. Gruen, Maria I. New, Jennifer J. Bell, Akira Morishima, Mona Shimshi, Yvette Bueno, Ileana Vargas, and Susan W. Baker. 1996. Gender change from female to male in classical congenital adrenal hyperplasia. Hormones and Behavior 30:319-322.
Money, John, Howard Devore, and B. F. Norman. 1986. Gender identity and gender transposition: Longitudinal outcome study of 32 male hermaphrodites assigned as girls. Journal of Sex and Marital Therapy 12 (3).
Nevada, Eli. 1995. Lucky to have escaped genital surgery. Hermaphrodites with Attitude, 6. (Enclosed: See Tab S)
New, Maria I., and Elizabeth Kitzinger. 1993. Pope Joan: A Recognizable Syndrome. Journal of Clinical Endocrinology and Metabolism 76 (1):3-13.
Newman, Kurt, Judson Randolph, and Shaun Parson. 1992. Functional Results in Young Women having Clitoral Reconstruction as Infants. Journal of Pediatric Surgery 27 (2):180-184.
Oesterling, Joseph E., John P. Gearhart, and Robert D. Jeffs. 1987. A Unified Approach to Early Reconstructive Surgery of the Child with Ambiguous Genitalia. Journal of Urology 138:1079-1084.
Patil, U., and F. P. Hixson. 1992. The role of tissue expanders in vaginoplasty for congenital malformations of the vagina. British Journal of Urology 70:556.
Reilly, Justine M., and C. R. J. Woodhouse. 1989. Small Penis and the Male Sexual Role. Journal of Urology 142:569-571. (Enclosed: See Tab U)
Reiner, William. 1997a. To be male or female that is the question. Archives of Pediatric and Adolescent Medicine 151:224-5. (Enclosed: See Tab V)
Reiner, William George. 1996. Case Study: Sex Reassignment in a Teenage Girl. Journal of the Academy of Child and Adolescent Psychiatry 35 (6):799-803.
Reiner, William G. 1997b. Sex Assignment in the Neonate with Intersex or Inadequate Genitalia. Archives of Pediatric and Adolescent Medicine 151:1044-5. (Enclosed: See Tab W)
Roscoe, Will. 1987. Bibliography of Berdache and Alternative Gender Roles among North American Indians. Journal of Homosexuality 14 (3-4):81-171.
Scheck, Anne. 1997. Attitudes changing toward intersex surgery, but for the better? Urology Times, August, 44-45. (Enclosed: See Tab X)
Schober, Justine M. 1998. Long Term Outcomes of Feminizing Genitoplasty for Intersex. In Pediatric Surgery and Urology: Long Term Outomes, edited by P. Mouriquant. London: (forthcoming from) W. B. Saunders. (Enclosed: See Tab Y)
Woodhouse, C. R. J. 1994. The sexual and reproductive consequences of congenital genitourinary anomalies. Journal of Urology 152 (August 1994):645-651.
Young, Hugh Hampton. 1937. Genital Abnormalities, Hermaphroditism, and Related Adrenal Diseases. Baltimore: Williams and Wilkins.
next: Trauma
~ all inside intersexuality articles
~ all articles on gender
The biology of sex is being hotly debated, as parents, doctors and researchers reevaluate what it means to be male and female.