Intersex and OK

When one Wisconsin parent learned his child was born intersex, it set him and his entire family on a crash course with medical professionals, and toward an even greater fight for acceptance and support.

Not long ago, I received an email from Eric Lohman, a professor of gender and media at the University of Wisconsin-Milwaukee. He identified himself as the parent of an intersex daughter and a board member of InterACT, a non-profit that advocates for delaying surgery in children born with intersex bodies. 

He reached out after hearing about and seeing our Colors in Bloom Campaign that Diverse & Resilient kicked off in February with a song and music video by Lex Allen, and now with billboards and ads that run through the month of June. The campaign is dedicated to reminding LGBTQ youth they are beautiful, loved, worthy just as they are. This is the message that he is trying to send his child, too. 

I receive a lot of emails from parents, often those with trans kids, who are looking for resources. However, this was an email asking to meet to help educate me about the Intersex community and the struggles of intersex youth and parents. I eagerly set up a time. 

Upon meeting with Eric, I was instantly drawn into his deep knowledge sharing and passion for his child and other children who are born intersex. I knew that children born with intersex bodies are typically subjected to cosmetic gender surgeries before they are old enough to consent. However, I was unaware of the resistance that parents and advocates met when trying to learn about other options besides surgery. Despite massive resistance from the Intersex community, these violent surgeries happen every single day throughout the world, including at Milwaukee’s Children’s Hospital. Seeing an ally in Diverse & Resilient, Eric sat down with me in April to implore us to listen to and partner with InterACT. 

When Eric was pursuing his PhD in Ontario, Canada, he took a graduate class on queer theories and methodologies. In that class, he learned about intersex issues and he learned about queer bodies and gender. One of the topics discussed was intersex issues, including nonconsensual gender surgery. At that time, he swore that if he ever had children, he would never allow that to happen. At that time, he barely understood just how common the surgery was in the United States and around the world. 

In 2012 Eric and his wife Stephani gave birth to their daughter, Rosie, named after Rosie the Riveter. Since birth, Rosie has confirmed her gender with her parents. Eric had a full view of the birth while his wife’s view was partially obscured because of her inability to sit up soon after an epidural. As soon as their child was born, Stephani slapped Eric on the arm and said, “See! Ultrasounds are often wrong! We have a boy!” She thought it was funny but Eric noticed the doctors all looking around the room and none of them were laughing. They looked concerned. 

Upon looking down at this beautiful new baby, Eric thought that his newborn baby may be intersex. All the things he had studied earlier were still fresh in his brain and it seemed hard to believe that this was going to be the reality for his family. He went to cut the umbilical cord and confirmed that Rosie was, in fact, intersex. 

About 10 minutes after Rosie was born a doctor came in to tell them that their child was “not quite a boy and not quite a girl,” and that their child showed signs of a very serious condition that would require close monitoring. At that point, they were told, it was too early to know, but Eric could tell they were tiptoeing around the issue. 

Three days later, they had a meeting with a medical team. Rosie’s condition had deteriorated. She was treated for Congenital Adrenal Hyperplasia (CAH). Rosie’s body was not producing the much-needed cortisol that most bodies produce, instead producing dangerous levels of testosterone, which caused the in-utero development of ambiguous genitalia. The team that the hospital assembled included endocrine physicians, social workers, surgeons, pediatric specialists, and more. A pediatric urologist recommended surgery at about six months to cosmetically change Rosie’s genitalia. 

At the same time, Eric and Stephani were pleased to learn that their daughter’s body was otherwise functioning fine so they didn’t feel that immediate surgery was necessary. Not having surgery was never presented as an option, and Eric says that he got hostile with the team because he felt their wishes as parents were going unheard. The surgeon was quite insistent on his own theory, and Eric felt unable to get through to him. Eric wondered what happens to parents who have not had access to the research.  

They felt misled and bullied. The meeting ended but a few days later when the CAH was confirmed, the pressure resumed. It appeared that this surgeon thought they were questioning his skills as a surgeon and presented pictures of other genital surgeries he’d successfully completed. This was upsetting and traumatizing to Eric and Stephani. After two more meetings, Eric felt that this surgeon was turning belligerent in his insistence that they consent to surgery on their child. 

After Eric and Stephani’s experience, they found InterACT, an organization that uses innovative legal and other strategies to advocate for the human rights of children born with intersex traits. One of their main goals is to end non-consensual cosmetic genital surgeries on children and let these children decide about their bodies when they are adults. You can learn more about InterACT at interactadvocates.org.

Through all of his research and advocacy, Eric learned that urological surgeons estimate that 75–85% of intersex children have nonconsensual surgery before the age of one due to pressure on parents. Eric, Stephani, and InterACT believe that the pushing of these nonconsensual surgeries is a human rights violation. 

The day I sat down to write this story, news broke that has Intersex advocates rejoicing. A paper released by three former U.S. Surgeons General—Dr. Joycelyn Elders, Dr. David Satcher, and Dr. Richard Carmona—called for an end to forced medical surgeries on young intersex people. 

“I really hope for a world that has a growing understanding and respect for intersex bodies and that intersex children can grow up and love their bodies for how they are and meet partners who do as well,” Eric told me, voice full of emotion and pride for his child and this work. “It won’t happen as long as nonconsensual surgeries are happening. We cannot have intersex people who love themselves if the medical community continues not to listen. We want intersex children to know that there is a community and society that loves and accepts them for how they were born. This is why I felt an instant connection to the Colors in Bloom campaign.”

Eric and Stephani have been featured on Katie Couric’s documentary, “Gender Revolution: A Journey with Katie Couric,” and they have a book coming out in July titled Raising Rosie: Our Story of Parenting an Intersex Child. They plan to hold an awareness fundraiser for InterACT on November 3 in partnership with 88Nine Radio Milwaukee.

Join the authors for their book release event on July 27 at Boswell Book Company in Milwaukee! More here.

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