Intersex Awareness Week Talk
Recently, I had the good fortune, along with Anne Tamar-Mattis, to be able to speak at the UC Davis Intersex Awareness week. Here is my talk. It has allowed me and my sister to become closer around my intersex past, and I hope that other people find it informative. Some of my most lively remarks were ad lib, and I cannot include all of the interesting questions and answers that were included in that session:
"I would like to cover some current issues of the intersex movement which are related to the work of Anne Tamar-Mattis's organization - Advocates For Informed Choice. I have the good fortune of being on the advisory board of AIC, as well as having worked for several years with Bodies Like Ours. In this talk, I will discuss some ethical and legal issues in a general setting. Anne will be able to provide additional perspective as a lawyer working in the area of intersex rights.
Traditionally, in the United States of the twentieth century, the birth of an intersex child was considered a social and medical emergency. The frequency of births of children with ambiguous genitals is commonly accepted to be about 1 in 2000 births. There is a very good film on intersex lives, by the film-maker Ajae Clearway, which is indeed titled “1 in 2000”. There are many different intersex conditions. One figure that I have seen mentions about 75 known intersex variations, which reflect a wide variety of hormonal and genetic variations. Intersex conditions include Congenital Adrenal Hyperplasia, Androgen Insensitivity Syndrome, Klienfelter's Syndrome, Mixed Gonadal dysgenisis, 5-Alpha-Deductase Deficiency, and Turner's Syndrome among others. To find out more about the condition specific nature of various intersex conditions, I recommend visiting the Intersex Society Of North America website, and the Intersex Initiative website. It should also be kept in mind that current knowledge of intersex variations is by no means complete. For example, today there are many XY intersex conditions that cannot be genetically resolved. Also, there are intersex conditions that do not become apparent until later in life. Late Onset Congenital Adrenal Hyperplasia is an example of such a condition.
The birth of an intersex child, is often more of a social emergency than a medical emergency. The salt wasting type of Congenital Adrenal Hyperplasia can be a life threatening emergency, and hospitals routinely screen for salt wasting CAH. There are other metabolic conditions that require immediate medical attention, such as the inability to urinate properly. However, in most cases, it is the so-called social emergency nature of the child's ambiguous genitals that cause the most concern. The size of the penis or clitoris is often a factor in decisions on the surgical treatment of intersex children. If a penis was under a certain size, it was often removed, and a female sex was assigned. If the clitoris was over a certain size, it was often removed in a full clitorectomy. In its early days, ISNA developed what they called a “phallometer”, which was a teaching device used to show the range of acceptable genital size. Even though it was a effective propaganda tool in the early days of the intersex rights movement, it has recently come under increased scrutiny. The medical decisions on infant genital surgery are often the outcome of a more complex set of medical considerations, and a review of the history of infant genital surgeries at Hopkins, reveal that over 30% of infant surgeries were for a male sex assignment. The Organization Intersex International (OII) is working in the area of challenging the gender-binary in the area of intersex infant sex assignments, and working to support those intersex individuals who reject their initial sex assignment.
Clitoral reduction surgeries remain widespread in the United States. In the past few years, mostly as the result of agitation by intersex people, and studies revealing a poor social-psychological outcome for infant genital surgeries for adults later in life, some doctors are considering delaying infant genital surgeries. A basic ethical principle put forward by the intersex rights movement is that infant genital surgeries, which are not necessary to improving the underlying metabolic health of the intersex child, should be delayed until such time as the intersex person can give informed consent for treatment. We are confronted with medical practices, in the United States, which do not respect the human rights of the intersex child. The stories that doctors tell to justify their own medical practices are often clearly homophobic, trans-phobic, and reveal deep fears of sexual variation. Repeatedly, I have heard stories that show a sexual fear of intersex children. One story that is very widespread in the intersex world , was recently repeated in a New York Times article entitled “What if it's (sort of) a boy and (sort of) a girl”. A doctor told Stanford medical anthropologist Karkazis, “The little girl was masturbating, and the parents just fell apart and were back in the office the next week for surgery.”
I had the good fortune to be able to work on the San Francisco Human Rights Commissions intersex task force. We extensively documented the physical and emotional distress caused to intersex adults by past non-consensual medical treatments. Historically, the treatment of intersex children was not only on a non-consensual basis, but was dominated by what has been called the “concealment model” of treatment. Under this model, the parents of an intersex child were never supposed to discuss intersex issues with their child, because it was thought that disclosure of infant medical treatments would interfere with a child's development of a stable gender identity and be heterosexual. One of the main recommendations of the final report is that infant genital surgeries, aimed at normalizing the physical appearance of an intersex child be delayed until the child can give informed consent to treatment. We have tried to get the findings and recommendations of the SF HRC intersex report before the SF Board of Supervisors, but so far, we have been unable to get the board to take them under consideration. I am happy to report that the City of Montreal in Canada has adopted similar language concerning the rights of intersex children. DVD copies of the HRC Intersex hearing, held in May 2004, and the final San Francisco HRC Intersex Report are available on line at the San Francisco government website.
In recent years, an increasing number of medical practitioners are being educated in a newer patient-centered model of intersex treatment. This model stresses a team inter-disciplinary approach to the treatment of intersex children. There are new published parental handbooks for the parents of intersex children that try to aid parents in raising them. These handbooks include the writings of intersex adults, who relate their own experiences of growing up intersex. Of great concern to interesex people is the issue of whether the patient-centered model will truly protect the rights of intersex children to bodily integrity, or whether the patient-centered model will be be restricted to supporting the choice of parents to have infant genital surgery performed on their child. Will the intersex child be provided with the truth, and will the concerns of the intersex child be listened to in a sensitive manner?
In the area of medical records, much progress needs to be made. Under new HIPAA regulations, medical records only need to be retained for seven years of record inactivity. I have heard many stories of intersex adults, who have not been able to retrieve their medical records. This problem extends beyond the intersex world, and is of great concern to many people who have been treated early in life for a variety of medical conditions. Historically, organizations like the March of Dimes (I was March of Dimes kid), do not give adults access to medical records related to the treatment of a wide variety of so-called birth defects. Also, hospitals have sometimes been reluctant to release medical records to intersex adults, and often only eventually do so under legal pressure.
Support and educational materials are increasingly becoming available to intersex people. For instance, when I was growing up, I did not believe that there would be a time in my life when interesex issues would be taught in schools, or discussed openly as we are doing today. Condition specific support groups are a major source of support for intersex people. AIS women have established an extensive international support network. Other intersex conditions have similar support networks. Since 2002, the organization that I work with, Bodies Like Ours, has provided on-line peer support and information for intersex people, and others interested in intersex issues. Our forum is visited by hundreds of people every day. Other organizations that maintain on-line support and information websites include the Intersex Initiative, the Organization Intersex International, and the Intersex Society of North America.
Personally, I think that there will be future improvement in the medical, social, and ethical treatment of intersex people. Although the work that we do today, will cannot undo the past ill treatment of intersex people, I believe that future generations will have a better life. I appreciate the work that Anne's group – Advocates for Informed Choice is doing in the area of the legal rights of intersex children. I know that Anne, and a group of dedicated legal interns working with her organization, have been very busy over the last year doing legal research on the rights of intersex children. Advocates for Informed Choice has also been active in the area of public education, providing people with an accurate view of the legal issues facing intersex people."
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