Approximately one out of every 1,500 to 2,000 people in the United States are born intersex, according to the Intersex Society of North America (ISNA). Despite the presence of intersexuality in our country, the topic remains surrounded by misconceptions that activist Sean Saifa Wall is on a mission to combat. He was a guest speaker at Eastern Connecticut State University on Nov. 15.
Intersexuality is a condition in which individuals have both male and female gonadal tissue (ovary or testis), or have the gonads of one sex and the external genitalia of the other sex. A prominent voice for intersex rights, Wall has partial androgen insensitivity syndrome (PAIS), a form of intersexuality. The ISNA reports that 1 in 20,000 intersex people are born with AIS.
From the start of his presentation, Wall exhibited confidence and an easygoing sense of humor, which served him well in addressing serious concepts. He informed the audience that advocating for intersex people is his life’s work, particularly regarding societal pressure to make them fit in and the execution of invasive surgeries to do so.
“As a gender non-conforming intersex person, I’m a threat,” Wall said. “This body was never meant to exist.” Nonetheless, the activist emphasized the prevalence of the intersex population, comparing the chance of knowing someone who is intersex to knowing someone with red hair.
Born in the Bronx in the late ’70s with a father who drank, abused drugs and cheated on his wife, Wall said, doctors assigned him a gender regardless of his intersexuality – girl. “I came into the world healthy and strong, but the doctors were confused,” he stated. Given the first name of “Susanne,” Wall grew up with undescended testes and ambiguous genitalia that his mother nicknamed his “torpedo.”
With the loss of his father to prison, and eventually death from AIDS, Wall’s mother was his primary caretaker. She reinforced his then-female gender identity with dresses and dolls, but he always felt more like a boy. For Wall, puberty included the expected development of breasts, but also incorporated certain male characteristics like substantial body hair growth. Then, something alarming happened: he began experiencing severe groin pain.
When Wall and his mother arrived at a New York City hospital, she was scolded by a doctor, who argued that she had waited too long to confront Wall’s undescended testes. From there, they met two doctors who changed Wall’s life forever: Dr. Terry Hensle and Dr. Anke Ehrhardt. The doctors decided he needed a gonadectomy, telling his mother that her then-daughter’s “gonads” were to be taken out – a medical procedure that effectively removed Wall’s testes.
The doctors then scheduled a “vaginoplasty” and told him they were going to “create a cavity inside of him.” Wall was repulsed. Aware of his concern, his mother asked if the surgery was something he wanted. Wall said no.
It was not until age 25 that he began his medical transition from female to male with shots of testosterone. At first, constant misgendering by others took a toll on Wall, at times hindering his functioning for an entire day. This is when he connected with “Jim,” the first openly intersex person he had ever met.
Since then, Wall has become dedicated to being open and active in his advocacy. As the former president of interACT Advocates for Intersex Youth, he is well-versed in public speaking as well as utilizing visual arts as a platform. Wall uses his past as a means for fighting against surgeries performed on intersex individuals who do not explicitly consent. He campaigns for the preservation of the community’s well-being and right to be left alone by society. “I share my story because people are starting to listen,” he said. “I have the story of so many people.”
As part of his efforts, Wall will soon release a documentary titled “Letters to an Unborn Son,” which centers on him responding to 30 letters his father wrote from prison. To conclude his lecture, he encouraged attendees to join the movement towards intersex liberation by speaking out on social media, integrating Twitter hashtags like “#IntersexStories” and “EndIntersexSurgery” to raise awareness. “We can’t do this alone. We need your help.”