About 6 years ago, filmmaker Ajae Clearway came to Atlanta to interview me for a intersex documentary that evolved into One in 2000. Ajae and I were first introduced at the annual Our True Colors LGBT youth conference in Connecticut that my ex and I were sent to by Bodies Like Ours to present workshops for intersex youth and their partners, a workshop for teachers on supporting and working with intersex youth and a workshop for those in the mental health field about ways they can support intersex clients.
Finally in 2007, after years of Ajae interviewing intersex individuals (and funding the film out of her own pocket,) One in 2000 was finally released. In April 2008, Ajae came to Atlanta and we did 4 screenings of the film in 3 days (At Emory, Charis, Spelman and Agnes Scott.) We estimate that between 300 and 400 people saw the film over that 3 day period, which is pretty damn exciting.
If you missed the film and live in Atlanta, you will probably have another opportunity to see it screened with little ol’ me, as I am likely to do a few more screenings locally in the future. If you work for an institution or are in school and want to have your library order it, it can be purchased here at institutional rates. And be sure to check out Ajae’s production company, Polyvinyl Pictures here and support independent, queer, feminist, filmmakers! Also, I have heard that they have been showing the film on Logo these days, so if you have the fancy cable be sure to check it out.
Below is the speech I read as an introduction to the film for your reading pleasure.
I am glad to be here today with Ajae Clearway and am proud of my involvement in ‘One in 2000’. It is extremely important to listen to the voices of those of us who are intersex. Most of the information about intersex people comes from medical professionals and academics who are NOT personally affected. It is important to remember that the true experts on intersex lives are intersex people ourselves. I appreciate that ‘One in 2000’ focuses on the voices and experiences of these true experts.
I am an intersex person who was diagnosed as a teenager. The intersex condition I have, Mayer Rokitansy Kuster Hauser Syndrome (MRKH), is rarely diagnosed until we are teenagers, because it is rarely evident until puberty occurs and menstruation does not begin. I was, like many people with MRKH, initially misdiagnosed as having an imperforate hymen, which is when the hymen is thicker than is typically found. This can have medical complications, because it can prevent menstrual blood from exiting the body. My MRKH was discovered after an attempt was made to cut my non-existent hymen and they discovered that I was in fact born without a vagina, cervix and uterus (or my uterus is smaller than common). The trauma of going through multiple genital exams, followed by an unnecessary surgery, followed by even more genital exams and discussions of how to create a vagina was quite difficult for me, especially at the always awkward age of 15. Doctors were much more concerned with my lack of a vagina and creating one, than they were with my emotional well being after receiving an intersex diagnosis. I was not informed of the potentially health threatening symptoms associated with MRKH and only learned of them through of my own research. Additionally, as all of my “options” for dealing with my MRKH were discussed, the option of continuing my life without a vagina, was never offered to me.
Fully informed consent is something that is absolutely necessary before any surgeries are performed. I feel that no non-essential medical interventions should occur until the intersex individual is old enough to make a fully informed decision. In order to make a fully informed decision, all options need to be presented, along with the pros and cons. This list absolutely must include the option to have no surgery. Doctors should stress that choosing not to have surgery is as much of an option as undergoing surgical procedures.
Additionally, I have great concerns about the current push for the identification of intersex conditions in utero, and the treatment of these conditions. Eugenics has a very real and dangerous history in this country and is still a very real threat, especially to people with disabilities and people with intersex conditions. I fear that as the causes of more and more intersex conditions are discovered, researchers will start to look for “cures”. I am concerned that this could result in preventing the birth of intersex individuals altogether. Surgery also plays a similar role (as addressed in the film). Intersex people represent one of the many variations in human bodies and surgery is being used to essentially wipe out an entire group of humans and force us to assimilate. In my case, doctors and researchers do not yet know the “cause” of MRKH. I have serious concerns about what will happen once a “cause” is discovered.
Educating the public is a large issue for intersex activists. Most people are not aware that intersex people exist, although I am sure we can all agree that 1 in 2000 births is not very rare at all. It is estimated that 5 children a day have unnecessary cosmetic surgery performed on their genitals due to a intersex condition. The medicalization of intersex bodies is a huge problem. These surgeries are seldom medically necessary and are strongly influenced by our deeply embedded ideas about gender, sex, sexuality and the idea of “right” and “wrong” bodies. It is time to put a stop to these unnecessary, traumatic and often complication-ridden surgeries without fully informed consent. It is time to start listening to the voices of intersex people and letting us make these decisions based on facts and not on the fears of a society that is terrified of difference.
I am one of the lucky ones. Because of my late diagnosis and my inability to emotionally handle this diagnosis, I did not go through with any cosmetic surgeries to create a vagina. Instead, from age 15-18, I hid this dark secret. I was ashamed and felt like a freak. I thought that no one would want to be sexually involved with me if they knew my secret. For much of those years, even when sexually involved with someone, I did not tell them that I was born without a vagina. This made sex stressful and unenjoyable most of the time. I spent all of my early sexual experiences trying to avoid penetrative sex, without revealing that I had MRKH. When I was 18, I stumbled upon a workshop at a queer conference in San Francisco, which featured 3 intersex people sharing their stories. I did not know the word intersex, nor did I have any idea that this word applied to me. Although none of the people who spoke had MRKH, the similarities of their experiences to mine was uncanny. When I returned home, I starting researching intersex and learned about the intersex activist movement. When I learned that a whole movement existed to end the shame, secrecy and non-consensual surgeries on intersex people, I finally felt a huge burden lifted from my shoulders. I learned that there is nothing wrong or shameful about my body, what is truly wrong and shameful is the way I and other intersex people are typically treated. I came out to the world as intersex. I finally felt empowered to be angry at the way I was treated and about the assumptions people make about my body based on my gender presentation. Having been involved in social justice movements for several years at the time, becoming a vocal intersex activist seemed like the logical next step. I only wish that one of the many doctors I saw as a teenager had told me the word ‘intersex’ and shared information with me about groups like the Intersex Society of North America years earlier.
Today, nearly 10 years after my diagnosis, I am living my life as an out and proud intersex person. I have elected to not have a vagina created and to instead keep my body as I was born. I have learned to love and be proud of my body, something I did not ever think was possible as a teenager. I have had wonderful, supportive partners, who love me and my body and wouldn’t change me for the world. I have given dozens of intersex presentations at colleges, universities, conferences and to community organizations both in Atlanta and around the United States. I have served on the board of directors of Bodies Like Ours, an intersex peer support and advocacy group and have pushed to get other social justice groups to include intersex issues in their work. The intersex movement has made much progress during it’s short existence. I look forward to the day when no intersex person ever feels ashamed of who they are and or the body they were born with. I look forward to the day when intersex bodies are no longer medicalized and there are no more stories to tell about painful, unwanted and unnecessary genital surgeries. I hope that ‘One in 2000,’ can play a role in making that a reality.