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What We're Reading
by Alice Domurat Dreger
Republished with kind permission from The Hastings Center Report May/Jun 1998, Volume 28, Issue 3 Pages 24-35.
Subject terms: “Medical ethics,” Surgery, Sexes, Reproductive system, Child development, Babies
Ethical issues in the treatment of intersexuality are examined. It is not at all clear if all or even most of the intersex surgeries done today involve what would legally and ethically constitute informed consent.
Copyright © The Hastings Center May/Jun 1998
What makes us “female” or “male,” “girls” or “boys,” “women” or “men”—our chromosomes, our genitalia, how we (and others) are brought up to think about ourselves, or all of the above? One of the first responses to the birth of a child of ambiguous sex by clinicians, and parents, is to seek to “disambiguate” the situation: to assign the newborn’s identity as either female or male, surgically modify the child’s genitalia to conform believably to that sex identity, and provide other medical treatment (such as hormones) to reinforce the gender decided upon. The assumptions that underly efforts to “normalize” intersexual individuals and the ethics of “treatment” for intersexuality merit closer examination than they generally receive.
2000 John W. Duckett, Jr., M.D. Pediatric Urology Lectureship
Friday, July 21st, 2000
8:30 a.m.-12:00 p.m.
Dow Auditorium, Towsley Center
University of Michigan Health System
Ann Arbor, Michigan
Each year, the University of Michigan’s Pediatric Urology Department hosts a lectureship in honor of the late John Duckett (a prominent surgeon well known for his hypospadias surgeries). In 2000, the lectures focused on a single topic: the increasingly evident paradigm shift in medical thinking about intersex.
Douglas A. Canning, M.D.
Associate Professor, Urology, Children’s Hospital of Philadelphia
60 minutes (australia) breaking the silence: Sexual reassignment (antoinette briffa), 2000. Directed by Anon. . Sydney. June 25. Available from: http://sixtyminutes.ninemsn.com.au/01_stories/2000_06_25/story_185.asp.
Anon. . 2000, Fall. Letters (intersex). Whole Earth, 100-101. Available from: http://www.findarticles.com/cf_0/m0GER/2000_Fall/66240481/print.jhtml.
Anon. . 2000, August. Frau und mann - alte mythen nuen rollen. Geo Wissen (special issue on intersex), 26. Available from: http://www.geo.de/magazin/wissen/2000/02.html.
Anon. . 1980, July. Letter to the editor. Ms., 9, 12.
Geraldo: Hermaphrodites, 1989. Directed by Anon. . New York: The Investigative News Group. July 27.
I'm not a man; i'm not a woman (sally), 1989. Directed by Anon. . New York. September 29.
Anon. . 1994, 26 September. Dr. Elders’ medical history. New Yorker, 70, 45-46.
Anon. . 1994, Oct/Nov. The intersexed--who are they? What do they want? Genderflex, IV, 13.
Anon. . 1995. Intersex society. The Society Newsletter (Society for the Scientific Study of Sexuality), Spring p. 3.
Meyer-Bahlburg, H. F. L., in press. Gender assignment and reassignment in intersexuality: Controversies, data, and guidelines for research. In: Zderic, S. A., Canning, D. A., Synder Iii, H. M., and Carr, M. C. eds. Pediatric gender reassignment: A critical reappraisal. New York: Plenum.
Rosin, M., forthcoming 2005 April. Intersexuality and universal marriage. In: Law and sexuality: A review of lesbian, gay, bisexual, and transgender legal issues: Tulane University Law School.
Anon. . forthcoming. Colombia constitutional court decisions regarding intersex. In: Minter, S., Currah, P., and Juang, R. eds. Transgender rights: History, politics, and law. Minneapolis: University of Minnesota.
Sallie Foley, ACSW
Senior Clinical Social Worker
Department of Social Work
University of Michigan Medical Center/Ann Arbor
George W. Morley, MD
Norman E Miller Professor of Gynecology
Department of Obstetrics and Gynecology
University of Michigan Medical Center Ann Arbor
Originally published as Foley, Sallie, and George W. Morley. 1992. Care and Counseling of the Patient with Vaginal Agenesis. The Female Patient 17 (October):73-80. Republished with kind permission from The Female Patient.
What is hypospadias?
© 1994 Intersex Society of North America
This is the presentation made by Joan Whelan in January, 2002 at the Intersex Panel for Sex Week at the Robert Wood Johnson Medical School. Sex Week, a required part of the curriculum for second year medical students, is a yearly series of lectures, workshops and discussion groups on a wide range of topics concerning human sexuality. The Intersex Panel was arranged by psychologist Nina Williams and consisted of Betsy Driver, Debbie Hartman, Dandara Hill, Kelly Leight, William Reiner M.D., Nina Williams Ph.D., and Joan Whelan (patient advocates, parents, surgeons, psychiatrists, and psychologists).
San Francisco, 1 de enero de 1998
Estimada doctora Eva Klein:
Hace mucho tiempo que deseo comunicarme con usted. Pero no es sino después de haber leído y reflexionado sobre el escueto informe que usted envió a mi madre el día 13 de octubre que me he decidido a hacerlo. Debo confesarle que creo que, quizá con la mejor de las voluntades, usted no me está diciendo claramente la verdad.
El informe dice que tengo "INSENSIBILIDAD A LOS ANDRÓGENOS, un cuadro genético ligado al cromosoma X". Ahora bien, de acuerdo a mis investigaciones en literatura médica especializada aquí en San Francisco, éste es un síndrome que corresponde a una serie de características que usted no menciona explícitamente en su informe: presencia de cromosoma XY (lo cual quiere decir que genéticamente soy un hombre), presencia de testículos internos (que corresponderían a las "hernias" que usted señala, y que me fueron extraídas), presencia de próstata (que fue confirmada por una ecografía realizada por un endocrinólogo en julio del 97 en Lima, que ha sido dejada intacta), y presencia de un clítoris más largo que el promedio (que me habría sido cortado en una clitorectomía parcial).
Escrita en el Cuerpo - Archivo y Biblioteca de Lesbianas, Mujeres Bisexuales y Diferentes
ISNA's general Recommendations for treatment of intersexed children
"'Ambiguous sex'--or ambivalent medicine?" Alice Domurat Dreger 1998, from The Hastings Center Report.
Most of the history of medicalization of intersexuality has yet to be investigated. This is pretty close to a complete list of the sources available as of July, 2000.
Some of these books are out of print; if not available at your library, you can often find them available for purchase via ABE Books.
Late Victorian Period
- Dreger, Alice Domurat. 1998. Hermaphrodites and the Medical Invention of Sex. Cambridge: Harvard University Press. Focusing on events in France and Britain in the late 19th century, Dreger takes us inside doctors’ chambers to see how and why medical and scientific men construed sex, gender, and sexuality as they did, and especially how intersexed bodies—when combined with social exigencies—forced peculiar constructions.
Midwest Pediatric Endocrine Society
La Rabida Children's Hospital
E. 65th Street @ Lake Michigan
Chicago IL 60649
301 EAST NORTH WATER STREET
por Cheryl Chase
Discurso pronunciado en la Quinta Conferencia Anual de Orientación Sexual y la Ley (5th Annual Sexual Orientation and the Law Conference)
Traducción: Mauro Cabral y Javier Leimgruber
Esta es mi primera presentación frente a una audiencia legal. Yo estaba un poco preocupada sobre esto, por lo que llamé a Shannon Minter, un abogado del equipo del Centro Nacional por los derechos lésbicos, para pedirle algún consejo. "No te preocupes por eso", me dijo él. "Las intervenciones en una conferencia legal son mortalmente aburridas. Ellos van a estar electrizados al escucharte". Espero espero ser capaz de mantener su atención con mi presentación. Pienso que el trabajo que ISNA está haciendo es muy excitante. Solo para estar del lado seguro, voy a condimentar esto con algunas diapositivas y video.
Morris, G. (2003). Is
it a boy or a girl? Just Out. Portland.
Some people who are intersexed need assistance with transitioning gender roles, and some people who are transitioning gender roles visit ISNA's web site looking for resources. There are many resources for this available on the web; below are some of the important links. ISNA does not have the resources or expertise to help people with this, and we have no plans to duplicate the services provided by existing transgender support and advocacy groups.
Some transsexual people and their advocates argue that transsexuality is a form of intersexuality that manifests in the brain, citing preliminary researches suggesting a possible biological "cause" of transsexuality, or "gender identity disorder." However, such claim misses the point that the intersex movement is not about whether or not something is biologically rooted, but about how our bodies are treated by medical authority as we grow up and live. Some transsexual people are in fact also intersexed and some intersex people do transition genders, majority are not.
Want to help the intersex movement advance civil rights for intersex people? Get your organization to join the growing number of pro-intersex organizations by adopting resolutions in support of intersex movement!
Ending Shame, Secrecy, and Unwanted Surgery
for Intersex Children:
Download a pdf of this document that can be printed on a single sheet, double-sided.
Shifting the Paradigm of Intersex Treatment
Prepared by Alice Dreger, Ph.D., for the Intersex Society of North America
Key points of comparison
What is intersex?
Intersex is a rare anatomical abnormality which is highly likely to lead to great distress in the family and great distress for the person with an intersex condition. Intersex is pathological and requires immediate medical attention.
Intersex is a relatively common anatomical variation from the “standard” male and female types; just as skin and hair color vary along a wide spectrum, so does sexual and reproductive anatomy. Intersex is neither a medical nor a social pathology.
Is gender determined by nature or nurture?
Nurture. Virtually any child can be made into a boy or a girl if you just make the genitals look convincing. It doesn't matter what the genes, brain, hormones, and/or prenatal life are/were like.
Both, surely, but that isn't the point. The point is that people with intersex conditions ought to be treated with the same basic ethical principles as everyone else—respect for their autonomy and self-determination, truth about their bodies and their lives, and freedom from discrimination. Physicians, researchers, and gender theorists should stop using people with intersex conditions in “nature/nurture” experiments or debates.
Are intersexed genitals a medical problem?
Yes. Untreated intersex is highly likely to result in depression, suicide, and possibly homosexual orientation. Intersexed genitals must be “normalized” to whatever extent possible if these problems are to be avoided.
No. Intersexed genitals are not a medical problem. They may signal an underlying metabolic concern, but they themselves are not diseased; they just look different. Metabolic concerns should be treated medically, but intersexed genitals are not in need of medical treatment. There is no evidence for the concealment paradigm, and there is evidence to the contrary.
What should be the medical response?
The correct treatment for intersex is to “normalize” the abnormal genitals using surgical, hormonal, and other technologies. Doing so will eliminate the potential for parents’ psychological distress.
The whole family should receive psychosocial support (including referrals to peer support) and as much information as they can handle. True medical problems (like urinary infections and metabolic disorders) should be treated medically, but all non-essential treatments should wait until the person with an intersex condition can consent to them.
When should treatments designed to make a child’s genitals look “normal” be done?
As soon as possible because intersex is a psychosocial emergency. The longer you wait, the greater the trauma.
ONLY if and when the intersexed person requests them, and then only after she or he has been fully informed of the risks and likely outcomes. These surgeries carry substantial risks to life, fertility, continence, and sensation. People with intersex conditions should be able to talk to others who have had the treatments to get their views.
What is motivating this treatment protocol?
The belief that our society can't handle genital ambiguity or non-standard sexual variation. If we don't fix the genitals, the child with an intersex condition will be ostracized, ridiculed, and rejected, even by his or her own parents.
The belief that the person with an intersex condition has the right to self determination where her or his body is concerned. Doing “normalizing” surgeries early without the individual’s consent interferes with that right; many surgeries and hormone treatments are not reversible. The risks are substantial and should only be taken if the patient has consented.
Should the parents’ distress at their child’s condition be treated with surgery on the child?
Yes, absolutely. Parents can and should consent to “normalizing” surgery so that they can fully accept and bond with their child.
Psychological distress is a legitimate concern and should be addressed by properly trained professionals. However, parental distress is not a sufficient reason to risk a child’s life, fertility, continence, and sensation.
How do you decide what gender to assign a newborn with an intersex condition?
The doctors decide based on medical tests. If the child has a Y chromosome and an adequate or “reconstructable” penis, the child will be assigned a male gender. (Newborns must have penises of 1 inch or larger if they are to be assigned the male gender.) If the child has a Y chromosome and an inadequate or “unreconstructable” penis according to doctors, the child will be assigned a female gender and surgically “reconstructed” as such. If the child has no Y chromosome, it will be assigned the female gender. The genitals will be surgically altered to look more like what doctors think female genitals should look like. This may include clitoral reduction surgeries and construction of a “vagina” (a hole).
The parents and extended family decide in consultation with the doctors. This approach does not advocate selecting a third or ambiguous gender.The child is assigned a female or male gender but only after tests (hormonal, genetic, diagnostic) have been done, parents have had a chance to talk with other parents and family members of children with intersex conditions, and the entire family has been offered peer support. We advocate assigning a male or female gender because intersex is not, and will never be, a discreet biological category any more than male or female is, and because assigning an “intersexed” gender would unnecessarily traumatize the child. The doctors and parents recognize, however, that gender assignment of infants with intersex conditions as male or female, as with assignment of any infant, is preliminary. Any child may decide later in life to change their gender assignment; but children with intersex conditions have significantly higher rates of gender transition than the general population, with or without treatment. That is a crucial reason why medically unnecessary surgeries should not be done without the patient’s consent; the child with an intersex condition may later want genitals (either the ones they were born with or surgically constructed anatomy) different than what the doctors would have chosen. Surgically constructed genitals are extremely difficult if not impossible to “undo,” and children altered at birth or in infancy are largely stuck with what doctors give them.
Who should counsel the parents when a child with an intersex condition is born?
Intersex is a psychosocial emergency that can be alleviated by quick sex assignment and surgery to reinforce the assignment. Professional counseling is suggested but typically not provided. Peer counseling is typically not suggested or provided.
Intersex is a community and social concern requiring understanding and support. Counseling should begin as soon as the possibility of intersex arises and/or as soon as the family needs it. Professional counselors trained in sex and gender issues, family dynamics, and unexpected birth outcomes should be present. Families should also be actively connected with peer support.
What should the person with an intersex condition be told when she or he is old enough to understand?
Very little, because telling all we know will just lead to gender confusion that all these surgeries were meant to avoid. Withhold information and records if necessary. Use vague language, like “we removed your twisted ovaries” instead of “we removed your testes” when speaking to a woman with AIS.
Everything known. The person with an intersex condition and parents have the right and responsibility to know as much about intersex conditions as their doctors do. Secrecy and lack of information lead to shame, trauma, and medical procedures that may be dangerous to the patient’s health. Conversely, some people harmed by secrecy and shame may avoid future health care. For example, women with AIS may avoid medical care including needed hormone replacement therapy.
What’s wrong with the opposing paradigm?
Parents and peers might be uncomfortable with a child with ambiguous genitalia. Social institutions and settings like locker rooms, public restrooms, daycare centers, and schools will be brutal environments for an “abnormal” child. The person with an intersex condition might later wish that her or his parents had chosen to have her or his genitals “normalized”.
The autonomy and right to self determination of the person with an intersex condition is violated by the surgery-centered model. In the concealment model, surgeries are done without truly obtaining consent; parents are often not told the failure rate of, lack of evidentiary support for, and alternatives to surgery. Social distress is a reason to change society, not the bodies of children.
What is the ideal future of intersex?
Elimination via improved scientific and medical technologies.
Social acceptance of human diversity and an end to the idea that difference equals disease.
Who are the proponents of each paradigm?
John Money and his followers, most pediatric urologists and pediatric endocrinologists, and many gynecologists and other health care practitioners.
Intersex activists and their supporters, ethicists, some legal scholars, medical historians, LGBT activists, feminists, and a growing number of clinicians.
© 1997 Tamara Alexander
Medical procedures have often been used as analogues for childhood sexual abuse (CSA) and have been seen as opportunities to observe children’s memories of these experiences in a naturalistic context (Money, 1987; Goodman, 1990; Shopper, 1995; Peterson Bell, in press). Medical traumas share many of the critical elements of childhood abuse, such as fear, pain, punishment, and loss of control, and often result in similar psychological sequelae (Nir, 1985; Kutz, 1988; Shalev, 1993; Shopper, 1995). It has been difficult, however, to find a naturally occurring trauma which incorporates aspects thought to be critical to the phenomenon of forgotten/recovered memories: namely, secrecy, misinformation, betrayal by a caregiver, and dissociative processes. There has been the added difficulty of finding medical events that directly involve genital contact and which accurately reflect the family dynamic in which abuse occurs.
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