Intersex Genital Mutilation Testimony: Living Beyond the Binary
Adeline’s story exposes the harm and the emotional pain done to intersex people in the name of conformity. In a world where it is still hard to accept bodies outside the binary, she now speaks out about the harm of non-consensual surgeries and the power of reclaiming identity, in the light of affirming intersex lives.
Discover more testimonies like this one in our publication “The Time is Now: End Female Genital Mutilation/Cutting (FGM/C)”.
My name is Addy, short for Adeline. That name has been with me my whole life, though not always openly. It’s a name with history, a name given to me by my mother, who thought I’d be born a girl after taking a drug called diethylstilbestrol (DES), which doctors guaranteed would ensure a healthy pregnancy. My mother believed I’d be named after my aunt Adeline, who had died tragically in the 1920s. But I was assigned male at birth, and my name was taken from me.
For years, my parents hid the reality of my body, a reality they were ashamed of, a reality they didn’t understand. Eventually, I took back the name that was always mine, Adeline. I was born in England to Irish parents: my father, a construction worker, and my mother, a nurse. They both carried their own heavy histories, especially my mother, who had survived an abusive upbringing.
When I was born, I was assigned male at birth. With a body that didn’t fit the medical norms, the doctors told my parents to keep it a secret. They said to move away, to avoid talking about it. My mother resented this and carried a bitterness she never quite let go of. We moved back to Ireland, where my childhood was a mix of shame, confusion, and constant punishment for being ‘different.
Growing up, I didn’t understand why I was treated as I was. I was effeminate, and in a world where masculinity was rigidly defined, I was constantly told I didn’t measure up. My father believed that forcing me into manual labor in his construction business would ‘toughen me up.’ It didn’t work. I wasn’t a ‘proper boy,’ and that was treated like a failure. I spent my childhood isolated, reading and drawing, hiding away in libraries. I was bullied and relentlessly beaten both at home and at school.
By fourteen, I had broken nearly every bone in my body. I survived, but at what cost? I moved to the United States to study and, for the first time, encountered people who were like me, people who didn’t f it neatly into the male or female boxes. It was eye-opening and deeply validating. I had spent years struggling with my identity, not even knowing the word ‘intersex’ until I was an adult. Growing up, I had no language for what I was, only shame. When I finally learned the words intersex and transgender, I found a way to define myself, a way to understand my own existence.
Despite the challenges, I went on to earn a PhD. My research focuses on the experiences of older intersex people across Europe, people who, like me, have lived in silence and shame, their medical histories hidden from them. I conducted interviews with people who had lived through the same kinds of secrecy and the same dismissive treatment by doctors, regardless of wealth or status. It’s astonishing how similar our stories are. Whether our families were wealthy or not, our bodies were altered without consent, and we were left to navigate the fallout alone.
I live with the physical and emotional scars of surgeries performed on me without my consent. When I seek help for the medical issues that these surgeries caused, I’m often dismissed or told that my experiences are ‘impossible.’ The medical community rarely understands, and worse, they often don’t want to understand. They are trapped in a system that maintains a strict binary view of bodies, a system that values conformity over the well-being of people like me. As I’ve grown, so has my activism. I am vocal about the harm done to intersex people, whether it’s in medical settings, in research, or in casual conversations.
I wrote letters to politicians, met with human rights officials, and even sat down with Queen Máxima of the Netherlands to talk about mental health for intersex children. People often don’t know what intersex means until they have an intersex child. By then, they’re left grappling with fear and confusion because society hasn’t prepared them for the existence of bodies that don’t fit the norms.
In my advocacy, I’ve seen how people who don’t fit into the binary are dismissed, devalued, and silenced. Medical professionals still perform unnecessary surgeries on intersex infants, justifying it with the same social reasons that fuel female genital mutilation (FGM) in certain communities. These surgeries, like FGM, are about control, about forcing people into narrow categories. The United Nations classifies these surgeries as torture, yet they persist, cloaked in the authority of medicine.
Living as an intersex person means living with constant stigma and isolation, compounded by a healthcare system that fails to see us. I’ve had to learn to find my own strength. Art has been one of my survival tools. Drawing gave me an outlet, a way to process the pain and turn it into something tangible. Without art, I’m not sure I would have survived. Many intersex people I know turn to creative expression as a lifeline, a way to tell their stories when words fall short
I’m not hopeful about the future. The rise of fascism and regressive ideologies makes it hard to believe that acceptance is on the horizon. But I keep fighting, not because I believe I’ll see the world change in my lifetime, but because I owe it to the people who come after me. I want them to know that there were those of us who fought for them, who spoke out, who refused to be erased.
My story is not unique. It’s the story of countless intersex people who were born into a world that didn’t know how to love or accept them. I hope that by sharing my story by pushing for change, I can make even a small difference. Because, in the end, it’s not just about intersex rights. It’s about humanity, dignity, and the right to exist as we are.