Intersexuality, a.k.a. Disorders of Sexual Development (DSD)
Historical background of Intersex/DSDs
In the late 19th century, as sexual orientation was just beginning to be understood by the medical community, individuals were rigidly assigned either a male or female sex. Doctors developed a classification system in which intersex individuals whose bodies did not conform to the usual male or female forms were declared "truly male" or "truly female" according to a simple rule:
- If the person had testes, he was considered a "male pseudo-hermaphrodite."
- If the person had ovaries, she was considered a "female pseudo-hermaphrodite."
Stability was preserved: only two sexes were recognized by the medical community and by the rest of society. 1 Back in those days, males and females were restricted to very different roles. Their position in society was rigidly determined. Any sexual ambiguity could not be tolerated by faith groups and by the rest of society.
During the 1920's, intersex specialists began to develop the concept of gender as a social role which might be different from one's biologically defined sex. Also at that time, surgical interventions became common to bring individual's genitalia into harmony with their assigned sex. The goal was to maintain the total number of sexes at two: if a person genitals did not meet the standard male design, then they were often surgically corrected to resemble the standard female design, and, less commonly: vice versa.
During the 1950's. Johns Hopkins University's medical center created a team dedicated to intersexuality. Their goal was to align intersex children's' bodies, their upbringing, and their mind into alignment with the gender chosen chosen for them at birth. Success was defined as an intersex patient who was stable in their assigned sex and who was sexually attracted during adulthood to members of the opposite sex. (Homosexual orientation was regarded by physicians and therapists at the time as a mental illness; that belief continued until the early 1970's.) Because of limitations in surgical techniques, which partly remain today, intersex newborns with ambiguous genitalia were most commonly surgically modified to resemble the typical female form, rather than male. It was common to keep the surgery secret from the child even into adulthood.
The team leader, psychologist John Money (1922-2006), promoted a feminist understanding that gender identity was easily changed early in a child's life. His obituary notice by the New York Times commented that Dr. Money:
"... argued that social and environmental cues interacted with a [young] child’s genes and hormones to shape whether the person identified themselves as male or female." 2
Major support for this belief came from a case involving two male identical twins born in Winnipeg, MB, Canada during 1965. The circumcision for one twin went terribly wrong. David Reimer's penis was accidentally burned off. His parents were told to raise the child as a female heterosexual. Followup reports said that the child had accepted being fully female. In reality, during his early teens, when Reimer found out the what had happened to him during his infancy, he immediately assumed a male gender identity.
Sex reassignment surgery on infants with ambiguous genitalia -- and/or have suffered genital injury -- became widespread.
In 1993, feminist biologist Anne Fausto-Sterling published a series of articles in The Sciences magazine and in the New York Times describing tragedies experienced by many intersex individuals who had been surgically altered early in life. This prompted Cheryl Chase to found the Intersexual Society of North America (ISNA). 9 It was initially a support group, but later evolved into an advocacy organization promoting openness and reform within the medical community.
As an adult, David Reimer participated in a study by an intersex specialist Dr. Milton Diamond. This resulted in a paper published in the Archives of Pediatrics and Adolescent Medicine for 1997-MAR, which was co-authored by Dr. Keith Sigmundson. It revealed the dreadful experiences of many intersex adults who had been surgically altered as newborns or infants.
Reimer twice attempted suicide in this early 20s and completed suicide in 2004 at the age of 38.
3 John Colapinto wrote a book about Reimer titled: "As nature made him: The boy who was raised as a girl." 4
The ISNA web site stated that since 1993 when their group was formed:
"... due to increased public education, tens of millions of people have learned about intersex. Thanks to the Internet, thousands of people with intersex have met others like them, in spite of having been told by their doctors they would never be able to do that [because] their conditions were supposedly so rare.
ISNA members have gone from picket lines to having a seat at the table in medical conferences. We give grand rounds presentations, help with medical school curricular development, and receive emails from physicians asking for our advice on how to handle intersex cases. Our web site is recognized as the definitive source for all things intersex, and for being a life-saving porthold for thousands of people desperate for answers and directions to 'their tribe'. We have convinced hospitals around the world to examine their practices, to find out what has happened to former patients, and to be accountable for the sometimes poor effects of good intentions.
Over a decade into the work of ISNA, medical professionals are less inclined to lie to patients and parents in intersex cases, are less likely to make openly homophobic or sexist remarks, and are more likely to admit uncertainty about the right course of action. A number of teams are engaged in active outcomes research, though opinions still differ about what outcomes should be sought; some think stable gender identity and heterosexuality are the objective; others suggest it should be lack of depression. What type of care an individual or family will receive now varies dramatically; what happens to a child with intersex today appears to depend not only on where she or he is born, but who happens to be on call when she or he is born." 4
During 2005, fifty international experts and representatives of patient advocacy groups participated in the International Consensus Conference on Intersex. They issued a group statement recommending that the intersex and other terms be replaced by the acronym "DSD" which can stand for "Disorders of Sex Development," "Disorders of Sex Differentiation," or "Differences of Sex Development." 5 The first meaning appears to be the one used by most specialists.
Eric Vilain reported that a consensus was reached that:
"... gender labeling in the diagnosis should be avoided, and use of the words “hermaphrodite,” “pseudohermaphrodite,” and “intersex” should be abandoned, as they either are confusing or have a negative social connotation that may be perceived as harmful by some patients and parents.
The term 'disorders of sex development' (DSD) was proposed and was defined as 'congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.' Many changes in terminology were also suggested, which were consistent with our nomenclature principles. The change of nomenclature was unanimously accepted by the large panel of experts present at the consensus conference, who were from very diverse backgrounds (Europe, the Americas, Australia, Asia) and perspectives (surgeons, endocrinologists, psychologists, geneticists, pediatricians).
This change has practical, scientific, and symbolic consequences.
Most importantly, patients will not be labeled with confusing names. But this change will go far beyond the doctor's office. Instead of being pervasively labeled with an all-encompassing term, such as “pseudohermaphrodite,” individuals with DSD, just like any patient, will be human beings with a diagnosis. 6
During 2006, ISNA released a document titled "Clinical Guidelines for the Management of Disorders of Sex Development in Childhood" which they recommended for use by the medical community. 7
Having raised the consciousness of physicians and others involved with intersexual persons, the Intersex Society of North America closed its offices during mid-2008. Their activist past had triggered some resistance among the medical community that had reduced ISNA's effectiveness in advocating on behalf of persons with DSD. ISNA's founder, Cheryl Chase, founded Accord Alliance during the same year:
"... to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by intersex (disorders of sex development), by promoting collaboration and shared decision-making between patients, families, clinicians, and researchers interested in improving care and health outcomes." 8
The following information sources were used to prepare and update the above
essay. The hyperlinks are not necessarily still active today.
- "What's the history behind the intersex rights movement?" Intersex Society of North America, 2008, at: http://www.isna.org/faq/history
- Benedict Carey, "John William Money, 84, Sexual Identity Researcher, Dies," New York Time, 2006-JUL-11, at: http://www.nytimes.com/
- John Colapinto, "Gender Gap: What were the real reasons behind David Reimer's suicide?," Slate, 2004-JUN-03, at: http://www.slate.com/
- John Colapinto, "As Nature Made Him: The Boy Who Was Raised as a Girl, Harper Perennial, (2006). Available in hardcover, paperback, audio cassette and Kindle formats. Read reviews or order this book safely from Amazon.com online book store
- Peter A. Lee et al., "Consensus Statement on Management of Intersex Disorders," Pediatrics, V. 118, # 2, 2006-AUG-01, at: http://pediatrics.aappublications.org/
- E. Vilain et al., "We used to call them hermaphrodites," Genetics in Medicine 9 (2) Pages 65 - 66, at: http://www.nature.com/
- "Clinical Guidelines for the Management of Disorders of Sex Development in Childhood," ISNA, 2006-MAR-25, at: http://www.dsdguidelines.org/
- "Intersex Society of North America," Wikipedia, as on 2012-DEC-02, at: http://en.wikipedia.org/
- The Intersex Society of North America ended operations in 2008. A new non-profit organization, Accord Alliance, composed of health care and advocacy professionals, opened its doors in 2008-MAR. It will "continue to lead natoional efforts to improve health care and outcomes for intersexual persons.
Copyright © 2013 by Ontario Consultants on
Originally posted: 2013-AUG-22
Last updated on 2013-AUG-22
Author: Bruce A Robinson