Lessons From My Mom About Body Autonomy

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January will mark two years that my mother suddenly passed away in her bed at home. Her birthday is on November 30th and I thought that it would be fitting to honor her memory/legacy/life.

When I came back to New York in December of 2016, I found my mother in a near death state. I begged her for three days to go the hospital, especially when I saw the lesion on her breast where the cancer literally ate through the skin.

We are both stubborn people, so I knew that my mother wouldn’t go easy.  

She wanted to die at home, but she didn’t tell me that because she knew that I would have done everything to save her. Our journey together as mother and child came full circle when her body deteriorated after years of untreated hyperthyroidism. After she passed, I spoke with her oncologist at New York-Presbyterian, the same hospital that castrated me, and she mentioned that my mother’s heart was beating as if she was running a marathon every day, even when she was doing something as mundane as watching television. The combination of her untreated hyperthyroidism and breast cancer diagnosis that she ignored for years left her despondent and she saw death as the only way out.

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After three days of my being there, her body started to shut down and she lost all bowel function. That scared her. She eventually conceded to going to the hospital, but only New York-Presbyterian Hospital. Also known as Columbia-Presbyterian Hospital, New York-Presbyterian comprises a complex of hospitals and medical schools. Their medical care is top notch, except when it comes to intersex infants and children.  I was born there in 1978 when my mother was 36 and was the last of three intersex children my mother would conceive.

When my mother was in the hospital this time, she was assigned a team of doctors who were dedicated to her physical and emotional health and wellbeing. They came from oncology, geriatric care, and psychology. One of the oncology doctors on her team asked, “Mrs. Wall, when was the last time you were in the hospital?” and she replied, “The last time I was pregnant with him.”   

Although she had two other intersex children that she raised as girls, she felt that my birth would be different. We were all born with an intersex trait known as Androgen Insensitivity Syndrome (AIS) where XY fetuses are completely or partially responsive to testosterone. AIS is one of at least 30 documented intersex traits that touch 1.7% of the human population. Historically, we have thought about intersex people as “hermaphrodites,” but that is biologically not possible for humans.

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Intersex bodies remind us of the beautiful possibilities that exist in nature.

My mother knew that she had a son. She would touch her belly when she was pregnant, acknowledging the baby boy growing inside of her. When I was born with ambiguous genitalia, doctors made the arbitrary decision to raise me as a girl since my phallus was not large enough according to their standards. They wanted to castrate me soon after birth, but my mother wanted my small infant body to be left alone. According to her, the pediatric endocrinology department hounded her for weeks, but the increased pressure only made my mom double down on her commitment to my body being left alone. Even though I was socially a girl, I was my mom’s right-hand man. Our relationship was complicated by her anxiety and narcissism, but I loved her nonetheless and was committed to her. So when she was in the hospital, I did everything within my power to fight for her.

She saved me from castration for 13 years, but the doctors, seeing that I was developing as male, told my mom that my testes, which they referred to as gonads, were cancerous and had to be removed. Because of my mom’s dreaded fear of cancer, she consented to the procedure without all of the information. Doctors knew then as they know now that the likelihood of cancer in internal testes for people with AIS is less than 5%. To be honest, I was surprised by the changes taking place in my adolescent body such as a deeper voice, face and body hair and lean muscle, but I was accepting my body’s destiny.

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These doctors robbed me of both my reproductive potential and my right to make decisions about what I wanted to do with my body.

After castrating me, they started a feminizing hormonal regimen that forever changed my face and body. Soon after castration, they wanted to do harmful genital mutilation surgery, but when we met with the surgeon, the graphic details of what he wanted to do scared me. He mentioned that he wanted to “shave down the clitoris and create a cavity inside of me so that I could have sex with my future husband.” Hearing that as a 13 year-old child was horrific and my mom accepted my decision to not go forward with that surgery. That one moment saved my life.

Intersex people, regardless of where they are in the world and what intersex trait they have, speak of similar and more gruesome horrors that have taken place in hospitals across the world. As for intersex activists, we are fighting for a world where intersex people can live with dignity and body autonomy.

A few weeks before my mom passed while she was still in the hospital, we got into a heated argument about whether she would go through with chemo. Exhaustion coupled with long days of patient advocacy broke me down into tears.  She had decided against it and all I wanted for her was to live.

My codependency was alive and well.

At that moment, my mother saw me in all of my years of intersex activism and said, “You are out here fighting for body autonomy as an intersex activist, let me have my autonomy!” In the end, she did. She died in a way that felt good to her. She had seen all of her children, grandchildren, and great-grandchildren before she passed. She died in the apartment where she lived for almost 45 years across from the bedroom where she brought me home from the hospital.

Although I was devastated and heartbroken by her death, I thought later, what a beautiful way for our journey to end. Through her advocacy as a parent of an intersex child, she created a way for me to be free and in return, I created a path for her spirit to be free as well.



Sean Saifa Wall is an intersex activist, artist and public health researcher living in Atlanta GA. You can learn more about him on IG @saifaemerges.