October 26th is Intersex Awareness Day – marking the 20th anniversary of intersex protests outside the annual American Academy of Pediatrics (AAP) conference in Boston. That protest is considered the beginning of intersex activism in the U.S. and the beginning of a movement.
Intersex – the “I” in LGBTQIA – is an umbrella term for people born with a biological sex characteristics that are not strictly ‘male’ or ‘female’. As common as red hair, nearly two percent of the population is born with reproductive or sexual anatomy and/or a chromosomal pattern that does not seem to fit the typical male/female binary notion of sex.
For example an intersex person could be born with XY, or typically “male” sex chromosomes, internal testes, and no uterus but have typically female genitals and secondary sex characteristics. A trait referred to as “androgen insensitivity”. Or a person may have typically “female” XX chromosomes and internal reproductive organs but have external genitals that are perceived to be atypical such as an enlarged clitoris. Intersex people are not really that rare; they have just been mostly invisible due to stigma and shame imposed on them by society and specifically some in the medical community.
Many have not even heard of intersex traits because until recently it has not been widely discussed. Doctors have attempted to surgically erase variations of sex anatomy attempting to make intersex bodies “normal”. Since the 1950s, intersex children have been routinely subjected to irreversible, harmful, and unnecessary surgeries and other medical interventions in an attempt to ‘normalize’ or ‘fix’ their bodies. But intersex bodies aren’t broken. In fact, in the overwhelming majority of cases there is no medically necessity associated with these irreversible and unconsented “treatments”.
These so-called “normalization” surgeries are simply cosmetic, and can result in loss of genital sensation and sexual function, sterility, scarring, ongoing pain, incontinence, loss of reproductive capacity, depression, and PTSD. Families are often told to keep these experiences a secret, sometimes even from the children themselves. Sometimes doctors did not fully inform the parents or the children about the procedures that they performed.
Since the 1990s, intersex people around the world have been stepping forward to speak out against the medical treatment they received in childhood. Many have disclosed that the secrecy surrounding their experiences led to traumatizing feelings of shame and stigma and had a profound negative impact on their lives. Leaders of the intersex community started calling for an end to unnecessary surgeries, and for children with intersex traits to have a voice in in the treatment of their own bodies!
Today, interACT, a national organization based in the Greater Boston area, is the only organization fighting to promote legal and human rights of intersex youth, as well as working to raise awareness of intersex issues in the media and empowering intersex youth advocates. Some of interACT Youth’s recent projects include a viral Buzzfeed Video entitled, “What it’s like to be intersex,” as well as consulting with MTV to create the first intersex main character on the popular teen show Faking it! interACT also uses innovative advocacy strategies on the state, federal and international levels to impact law and policy in favor of intersex rights.
The LGBTQA community and the intersex movement are fighting some of the same societal constraints associated with not fitting into narrow understandings about bodies and identities. Most intersex people share the common experiences of discrimination, stigma and shame based on non-binary notions of sex, gender, and sexual orientation. Although intersex is not a sexual orientation, it can be an important identity that some have reclaimed and celebrated in the face of medical providers who’ve felt intersex is shameful and should be kept hidden.
This intersex awareness day, please consider sharing this information with a friend who many not yet understand what the “I” in the alphabet soup stands for. For more information, go to www.interACTadvovates.org.
Kimberly Zieselman, JD, is an intersex activist and Executive Director of interACT: Advocates for Intersex Youth, and lives in Sudbury, Massachusetts.