Intersex Declared a Human Rights Issue
Today the San Francisco Human Rights Commission declared that the standard medical approach to intersex conditions leads pediatric specialists to violate their patients’ human rights.
“In issuing this report, the San Francisco Human Rights Commission has essentially declared me a human being,” said Cheryl Chase, Executive Director of ISNA. “They have agreed that I—and children born like me—deserve the same basic human rights as others.” Chase, who was born with mixed sex anatomy internally and externally, went on: “No longer should we be lied to, displayed, be injected with hormones for questionable purposes, and have our genitals cut to alleviate the anxieties of parents and doctors. Doctors’ good intentions are not enough. Practices must now change.”
Intersex conditions are those in which a person is born with sex anatomy different from the standard male or female. The phenomena have often been labeled by the misleading 19th century medical terms “hermaphroditism” and “pseudo-hermaphroditism.” Intersex conditions include Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia, 5-Alpha Reductase Deficiency (the metabolic anomaly featured in Jeffrey Eugenides’ Pulitzer Prize-winning Middlesex), gonadal dysgenesis, and dozens of others. In the U.S., approximately one in 2,000 children is born with genitalia obviously blending male and female elements. Significantly more people are born with more subtle intersex conditions.
This is the first time that any governmental body in the U.S. has addressed medical management of intersex people as a human rights issue. For over a decade, adults who were treated as children for intersex conditions have been demanding that medical care focus on the long term quality of life of the patient, rather than on alleviating parental angst by hiding the child’s intersex condition through secrecy and risky, medically unwarranted surgery and hormones. Their voices have been joined by medical ethicists and a sizable minority of the pediatric specialists.
The San Francisco Human Rights Commission’s report stems from a public hearing on May 27, 2004, at which many people with intersex came forward publicly to describe their experiences. The substantial pain and suffering related by these people motivated the Commission to launch a full-scale investigation. Their testimonies can be viewed online as streaming video or ordered in DVD or VHS format.
The Human Rights Commission specifically condemned the continued healthcare practices of performing irreversible “normalizing” genital surgeries without the patients’ consent, lying to patients about their medical histories, withholding their medical records, and repeatedly displaying intersex children’s genitals. The Commission also objected to the failure of medical institutions to adequately address parental needs for informed consent and psycho-social support.
In finding cosmetic infant genital surgeries to be medically unwarranted and risky, the Commission insisted that “‘Normalizing’ interventions done without the patient’s informed consent are an inherent human rights abuse.”
The American Academy of Pediatrics (AAP), in its 1998 Policy Statement on Female Genital Mutilation, “opposes all forms of FGM [female genital mutilation],” and cites the federal “Female Genital Mutilation Act of 1995” which prohibits the removal of “the whole or any part of the labia majora or labia minora or clitoris of another person who has not attained the age of 18 years.” Yet, in response to an inquiry from the San Francisco Human Rights Commission, the AAP forwarded its Policy Statement on Evaluation of the Newborn With Developmental Anomalies of the External Genitalia. The policy calls the birth of an intersex child “a social emergency” and calls for genital surgery, including removal of parts of the clitoris, as early as possible.
Other professional medical organizations surveyed by the Human Rights Commission either deferred to the AAP or acknowledged that field is in turmoil. For instance, The American Urological Association’s response to the Commission acknowledged that they have no official policy on the issue and that “there is a divergence of opinions among respected professionals” and “an increasing number of physicians … feel that … delaying reconstructive surgery until the individual is able to participate in the decision making process, is appropriate.”
Members of the Intersex Society of North America had pushed for the Human Rights Commission’s investigation for nearly a decade. ISNA Board member David Cameron (who has XXY chromosomes, which medicine labels “Klinefelter’s Syndrome,”) was particularly active in pressing for the investigation. “Perhaps now,” Cameron said, “we will stop being the subjects of medical experimentation, and start being the subjects of truly humane care.”
Though the medical profession is unified in its belief that intersex is first and foremost a psycho-social concern, rather than providing psycho-social support most institutions continue to address it by using surgeries and hormones to change the child’s body in ways that are medically unwarranted, risky, irreversible, and not consented by the patient.
“The approach has been to attempt a short-term ‘fix’ of the child, rather than providing the long-term honesty and psycho-social support people with intersex and their families clearly need,” said Dr. Joel Frader, Professor of Pediatrics and Bioethics at Northwestern University and Children’s Memorial Hospital in Chicago, and Chair of ISNA’s Medical Advisory Board. “Though the motivation for this approach may have been good—and we think it was in most cases—many people with intersex and their families have been irrevocably harmed. We need a return to ‘first, do no harm.’”