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July 2, 2003
Dear ISNA Board Members,
First of all, thank you for your past and ongoing work on behalf of intersex children, adults, and family members. Over the past decade, Intersex Society of North America has drastically and positively impacted many lives, including mine.
I am writing this letter to you as a fellow intersex activist and a former ISNA employee/staffer who is concerned about the current direction of the organization, in particular the recently announced collaboration between ISNA and Birth Defects Research for Children, Inc.
Looking over BDRC's web site, I cannot help but notice that the basic ideologies of BDRC are incompatible with the goals and missions of the intersex movement, which is to end shame, secrecy, and unwanted genital surgeries on children born with intersex conditions.
Like many other disability-related organizations that are NOT run by disabled people, BDRC is geared toward prevention and cure--thus, elimination--of disabled bodies. The contemporary disability movement, on the other hand, believes in challenging and transforming social structures and institutions that "disable" bodies that the society deems "abnormal."
There is a historic conflict between disability-rights organizations that seek to liberate disabled people, and disability-control organizations that promote elimination and assimilation of the disabled body. The former is run by disabled people themselves who demand autonomy, empowerment, and equal access; the latter is run by parents and doctors of disabled people, and can be traced back to the eugenics movement.
The efforts of the latter movement frequently run contrary to the interests of the disabled people. For example, there is an organizaiton that claims to support people with mental illness but are in reality made up of parents and professionals, which has extensively lobbied State legislatures to promote forced medication and forced institutionalization of mentally ill people under the guise of caring for them.
ISNA that I used to work many hours for belonged to the former group: it sought social change, not the "cause" or "cure" of intersexuality. It was surgeons and endocrinologists who want to rescue us by surgically eliminating our difference that belonged to the latter. Today, I fear that ISNA is now slipping into the latter group.
As an intersex activist, I am concerned about the eugenicist impulse behind BDRC's desire to prevent "birth defects"--a phrase that came from the long tradition of eugenics movement, fueled by the hijacking of lived experiences of disabled people by the parents and doctors who manage and control their lives. While I have no reason to oppose removal of harmful toxins from the environment, that is not the kind of social change that intersex activists have been working for.
I question the notion that the scientific research on the environmental causes of intersexuality (which itself is a valid area to research) would reduce stigma or improve quality of life for people born with intersex conditions; I believe it is systemic social change and education that will. I question that the collaboration with disability-control organizations such as BDRC would actually contribute to the ISNA's long-term goal of ending shame, secrecy, and unwanted genital surgeries. I feel that supporters and constituents of ISNA deserve an explanation as to its rationales for its association with this particular project, and how it would ensure that ISNA remains an activist organization dedicated to social change.
Even though I find BDRC's underlying ideology problematic, I feel that there is still some room to work with them on some of its projects. For example, we can help BDRC improve the kind of information it provides to parents of intersex children, which will benefit both parents and intersex children. I also understand that sometimes we are forced to compromise our core principles to meet immediate needs. However, as an organization devoted to the patient-centered (and not biomedical, eugenicist, or parent-centered) model of medical treatment, ISNA needs to carefully evaluate the dangers of co-optation by those who view our queerly different bodies as defective or aberrant.
Back in the late 1990s, when I was finally putting together my thoughts around what had been done to my body, Cheryl Chase and others taught me through their words and actions that my body was just fine as I was born, that the doctors were wrong when they decided otherwise. We need to keep sending the same message until it becomes so obvious that nobody would question it.
Emi Koyama
Director, Intersex Initiative
http://www.intersexinitiative.org/