Intersex Surgeries Hurt Everyone

On April 5th, 2019, the Intersex Justice Project (IJP) and Voices4 came together to protest the CARES Foundation and its support of deeply harmful, medically unnecessary surgical “normalization” of intersex infants and children. Here are the players: the Intersex Justice Project works for a world in which intersex children are free from medical harm and are able to make their own decisions about their bodies in partnership with their parents and doctors. Voices4 is a committed group of queer people who, through direct action, fight for the “freedom and dignity of LGBTQ people all over the world.” The CARES Foundation claims to “improve the lives of people affected by CAH” but still continue to refer to this intersex trait as a disorder or a disease.

People with intersex traits are not disordered or diseased.

We are a normal part of human variation.

We protested the CARES annual gala which was held at 230 Fifth Avenue in New York City, at which CARES gave a lifetime achievement award to a researcher, Dr. Maria New who has tried to medically erase queer identities. Despite the cold and rain, people came out to support our event. We chanted. Intersex people and allies shared their stories. The people who attended the gala actively tried to avoid our protest except for one woman. She interjected herself into the protest, unlike other people who asked questions from the sidelines. She clearly had some skin in the game. She is the mother of a woman with CAH who identifies as a lesbian. She said that we didn’t know what we were talking about. She was adamant that CAH is not an intersex trait. At first, she thought I was a medical professional, but when I shared that I was a patient with Partial Androgen Insensitivity Syndrome who was subject to medically unnecessary intervention when I was younger, she expressed no compassion and flatly said, “That’s not the same!” At that point, I realized she had internalized all of the rhetoric doctors had shared with her over the years. On some level, that rhetoric eases her shame about what she allowed to happen to her daughter. Her denial of my experience as a patient allows her to justify the actions of doctors as well as her own.

Just having a light conversation with a parent of a CAH patient

Medicine, like many other institutions in the United States, is anchored in pathology, patriarchy and white supremacy. For many years, J. Marion Sims was heralded as the “father of modern gynecology” who perfected his techniques on enslaved Black women in Alabama and poor Irish women in New York City. Advances in Western medicine have addressed diseases that once killed and disabled people such as polio and tuberculosis. If HIV treatment was where it is now, a whole generation of people, like myself, would not have been devastated by the loss of loved ones. Despite the achievements of western medicine, I do not agree with protocols that continue to mutilate the bodies of intersex infants and children to align biological sex with gender. Eventually, these young people become adults who live with the consequences of these arbitrary decisions by medical providers and parents.

As the title says, intersex surgeries hurt everyone involved. The most immediate impact is on the body of the child. There is an assumption, similar to male circumcision, that if these surgeries are done early enough, that the child “won’t remember” and somehow the child will be fixed. This line of thinking is deeply troubling because intersex children are not problems to be fixed similar to how ‘corrective rape’ does not cure homosexuality. This only reinforces dominance and oppression on the bodies of the most vulnerable in our society. In addition, trauma always leaves deep imprints on our bodies no matter how much we try to bury our experiences. As someone who was castrated at 13 by New York-Presbyterian Hospital in New York City, I remember feeling my testicles in my groin area before they were removed. Before surgery, I also remember asking my mother if they could give me both estrogen and testosterone after surgery because I liked the way my body was masculinizing. Intersex surgeries, without thorough informed consent, cause emotional, physical and psychological harm. Intersex activism recognizes that we have been harmed by an institution whose supposed goal is care and wellness but increasingly (at least in the United States) is increasingly motivated by money rather than humanity.

For mothers who give birth to intersex children, I have noticed that there can be immense guilt and shame. All of my accolades as an intersex activist could not address my mother’s guilt about having three intersex children. She felt that something was genetically wrong with her and although she loved and protected us, she desperately wanted to give my father a child whom she saw as “normal.” The surgeries that parents “consent” to take place in a web of lies and fear — parents are not told what they are consenting to is a form of torture according to the UN. Parents who know intersex people and have heard our stories, who are educated on the topic and have support from other parents might be less likely to make urgent decisions about surgery. Similar to other patterns of abuse, secrecy thrives in isolation.

As urologists and endocrinologists continue to uphold this system, they continue to suffer as well. Maintaining oppression requires oppressors to “turn a blind eye” to systemic injustice. Doctors do this by trying to isolate intersex people from each other by saying to patients and families that “your case is extremely rare” or “this medical information should not be shared with others.” In a public sphere, they try to re-classify intersex variations such as hypospadias and Congenital Adrenal Hyperplasia as something which is “not intersex” to quiet the protest of intersex activists and again make it seem as if intersex is something that is rare and uncommon. Some of these doctors have very fractured egos and cannot tolerate any criticism of their surgical techniques or ideologies even when patients have literally cried out. By denying our humanity, they are denying their own humanity as well. By not speaking up and holding their peers accountable, doctors are contributing to the existing trauma that so many intersex people live with and are ignoring the first principle of the Hippocratic Oath, “Do No Harm.”

Although I don’t know this woman, I am glad that she stepped up. As the many well-to-do attendees of the CARES gala streamed in, they nervously moved around our protest trying to escape notice. A few people stopped to look and listen. Overall, our protest was very successful. Perhaps her action is an indication of what is to come, where some parents will publicly justify these medically unnecessary surgeries, or perhaps it is an opening to heal some of the shared pain that we all experience because of these interventions.