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Last Updated: July 25, 2003
Removed board members' names on July 29, 2003
On June 16, Intersex Society of North America (ISNA) announced its research collaboration with Birth Defects Research for Children, Inc. (BDRC), an Orlando, Florida non-profit organization that provides information to parents of children with "birth defects." The goal of the collaboration was to find the link between the presence of synthetic chemicals in the environment and the rate of intersex births. The announcement surprised many intersex activists and supporters, because in the past ISNA had always advocated for the social acceptance of intersex bodies, not the "cause" or "cure/prevention" to eliminate them. Has ISNA changed its mission or lost focus?
After speaking with our core volunteers, advisors and supporters, Intersex Initiative (ipdx) director Emi Koyama wrote a letter to ISNA board members on July 2 expressing her and ipdx supporters' concern over the announcement. ISNA board members responded on July 12 defending the collaboration. After reading ISNA's response, we are still not comfortable with the project, and at this point we felt that it was the time to make this discussion public--so that intersex activists and supporters outside of ISNA/ipdx will be able to join in and voice opinions.
One thing we want to make clear is that we are not trying to attack ISNA or urging other intersex activists and allies to withdraw their support for ISNA; in fact, Emi Koyama is planning to perform in a benefit show for ISNA planned this November, just as she did last October. Instead, we are hoping for a greater dialogues within intersex activist communities and among our allies from disability, queer, and feminist activist communities. In the end, we hope that the discussions will help lead our intersex movement into better directions.
In the following sections, we broke down our concerns into three categories: what/why, how, and with whom. In each section, we discuss what part of the announced collaboration we find problematic, and propose alternatives or ways ISNA could improve the situation.
In this collaboration, ISNA and BDRC are working to find out the extent to which synthetic environmental chemicals increase the rate of certain intersex conditions. If there is a connection between synthetic chemicals and physically debilitating medical conditions, it would add support to the argument for a better regulation of synthetic chemicals.
However, intersex conditions are not what debilitate intersex people; it is the society's preocupation with the concept of normalcy that does. While it is true that some intersex conditions are associated with physically debilitating medical conditions (and researches on prevention and cure for these conditions are completely valid), studying the causes of intersex with an organization that studies "birth defects" gives the wrong impression that intersex itself is limiting or undesirable.
British disability theorist Michael Oliver distinguished impairment, which is the limitation directly caused by the lack of limb or function in a body, and disability, which is the limitation placed on people with impairments by social structures and institutions. ISNA has traditionally focused on challenging the social structures and institutions that "disable" intersex bodies--those medical and social systems that deem intersex bodies unacceptable and freakish. The new announcement from ISNA shifts the focus away from this core mission, and fails to make this important distinction between impairment and disability clear.
Worse, when any relationship between the rate of intersex births and the exposure to synthetic chemicals is reported, we fear that it is not the concern for people living with debilitating medical conditions, but the society's perception of intersex as freakish and monstrous that will persuade the public that environmental toxins must be controlled. Rather than breaking down myths and stigmas associated with intersexuality, we fear that the process will inevitably benefit the environmental health movement at the expense of intersex people.
We also fear that people accessing ISNA's web site today--which includes intersex people and parents of newly diagnosed intersex children--will get a message that is the opposite of what many of us did when we first found ISNA in the past. With the announcement of ISNA's collaboration with BDRC prominently posted on the top page, we are afraid that ISNA is now sending the message that intersex bodies are undesirable and aberrant, however unintentionally.
In England, the research team led by Sarah Creighton and Catherine Minto have been working extensively with British CAH and AIS support groups for the last several years to produce amazing scholarship regarding the real-life impacts of early surgical treatment on intersex. As part of their cooperation with patient advocacy groups, they developed an intersex clinic, where patients receive intersex-related medical care from experts who are not only knowledgeable about intersex conditions, but are also supportive of their different bodies and respectful of their right to dignity and self-determination. Research models such as these are clearly beneficial to the intersex movement as well as to individual participants.
If ISNA were to begin taking greater part in researches involving intersex people, it needs to establish a clear guideline that would be used to determine which research projects ISNA needs to get involved, and with whom. It would ensure that any research it participates in would directly address concerns of people living with intersex conditions (rather than those of doctors, scientists or parents), and that finding out the result would directly benefit the intersex movement.
Studies by Minto, Creighton, and colleagues meet both of these criteria; it is questionable if BDRC's meets either. As ISNA engages in more research projects, it needs to stress firmly that patient-centered research does not simply mean that researchers focus on the patient, but it means, more importantly, patients have the power to set priorities for and monitor the designs of any research in which they participate.
BDRC describes itself as a non-profit organization that "provides parents and expectant parents with information about birth defects and support services for their children." So, three weeks after ISNA's collaboration with ISNA had been announced, we placed a request for the information about congenital adrenal hyperplasia (CAH) and "ambiguous genitalia" from BDRC in order to find out how exactly they assist parents of intersex children. The result was hugely disappointing: we received a BDRC brochure, a cover letter, and two short print-outs from the MEDLINE, a free online scientific database maintained by the National Library of Medicine.
For example, the information sheet BDRC has sent us lists "abnormal female external genitalia" as one of the "complications" of CAH, and states that "reconstructive surgery for girls with masculine external genitalia is usually performed between the age of 1 and 3 months," without mentioning any potential physical, emotional or sexual harm we feel are caused by the childhood genital constructive surgeries. The information sheet on "ambiguous genitalia" includes the following passage: "It is often easier to treat (and therefore raise) the child as a female (it is easier for a surgeon to make female genitalia than it is to make male genitalia)..." Nowhere in the entire packet does BDRC include materials from ISNA, or even mention the existence of the patients' movement against cosmetic genital surgeries and the medical professionals who question the current protocol of the treatment.
If BDRC is indeed a partner of ISNA, and had been so for at least three weeks before putting together this packet, shouldn't we expect more? This is one of things that make us question whether or not ISNA actually took the time to educate BDRC about our missions and goals to ensure that we are on the same page before jumping in a research project with them.
We were disappointed by the content of the packet we received from BDRC, but we did not find it shocking. Based on our reading of BDRC's web site, we knew that it was an organization by and for parents and doctors who "manage" disabled people, rather than the one dedicated to empowering people with disabilities. Disability activists have historically criticized organizations like BDRC for failing to challenge social structures and institutions that "disable" their bodies by focusing on finding causes or cure of their impairments, and for lacking critical awareness of their historical root in the eugenics movement.
Assuming that ISNA has not yet budged its commitment to social change, the core ideology of BDRC is incompatible with the mission statement of ISNA. BDRC may be able to improve the information packet it sends to parents of intersex children, and we should definitely help them do so before they send out another packet like the one they sent us, but fundamentally they do not share our movement's radical critique of social and medical institutions that shape our queer bodies and lives. By affiliating ourselves with BDRC and other groups like them, we fear that ISNA is turning its back on our ideologically more compatible allies and supporters from disability, queer and feminist movements, each of which have challenged the pathologization and biomedical control of our bodies in unique ways, paving the way for the intersex movement to come along.
We feel that ISNA entered into the collaboration with BDRC prematurely, but we believe it can be made better. First, ISNA needs to have a serious discussion with BDRC about the information it distributes to parents of intersex children and provide materials. Second, ISNA can make concerted effort to address the distinction between the "intersex" genitals that are merely "socially problematic" and the medically debilitating conditions in all communications, especially in relation to this project. Third, ISNA can institute a more rigorous protocol by which it evaluates which research projects it should participate in the future and with whom. Lastly, the intersex movement needs to firmly align itself with disability activists and others who wholeheartedly understand that intersex bodies are not freakish or monstrous, than with those groups that come from the opposite point of view. Within the environmental health movement, we should seek out new allies that are more compatible with our missions.