The self I will never know: Esther Morris, born with an intersex condition, writes about the scandal of 'corrective surgery' whereby thousands of children are mutilated without consent - Sexual & Gender Diversity

New Internationalist, Jan-Feb, 2004 by Esther Morris

Many people believe that corrective treatment created problems they didn't have before. Others believe that the foundation of their discontent is the treatment itself; and the values that overlook medical needs in the rush to correct intimate anatomy. Although doctors have produced a number of studies that support the current protocols, the reports contain limited definitions of physical normalcy. There is currently no data collected that includes quality of life for intersex outcomes. The intimate nature of intersex is complicated by the stigma around genital anatomy. We are not so quick to judge other parts of anatomy. We teach our children to respect diversity, yet adults create a 'state of emergency' over the size and shape of genitals. The real phenomenon is that the prevalence of genital and reproductive variation is kept such a secret. Intersex variations are so quickly 'disappeared' that we don't get a chance to know about them, or how they might mature.

Break the cycle

The panic of discovery is real, and based in a perpetual cycle of ignorance. Discovery invites panic because intersex is unheard of. Panic invites correction to make it go away. Correction invites a conclusion that out of sight is out of mind. Doctors will admit to the wide range of variation, but the standard for what is acceptable has been determined by social and medical values rather than human nature. Removing intersex variation tips the scale to override diversity. By normalizing genital and reproductive anatomy, we lose awareness. With each altered child, another will be born into the panic of ignorance.

The truth is that we need to move intersex away from the medical context and into our social consciousness. I think of intersex as a civil rights movement still in the stage of breaking the silence. I compare intersex awareness to other movements that have earned their place in the world. You cannot remove our existence by removing our anatomy. The panic that people feel at discovery comes from silence and isolation. Inclusion of diversity could prevent emotional trauma without physical or emotional scars. Educating families would provide time for children to decide what they want for themselves.

When I talk to people about intersex they are stunned by what they did not know. Their ignorance is genuine and their concerns hopeful. They see the benefit that intersex awareness can liberate everyone from rigid standards. History reminds us that social values can change with awareness. Just like homosexuality, which has finally been removed from the Diagnostic and Statistical Manual for mental disorders, intersex cannot be cured. Corrective treatment will never change who we really are: it only prevents others from knowing us.

The invasion I feel now is the need to feel my past and the fallen hope that I would find my 'self' in a medical diagnosis. Nary a day goes by that something doesn't remind me that I am a misfit in a normal world. When I am strong, I revel at being a misfit, and know that normal is no-one's reality. When I am strong I challenge ignorance and educate those who care to know. But I feel invaded when my strength dwindles, and I return to a solitary world. I feel invaded by pain and health concerns that never were addressed during treatment. I feel invaded by the ignorance of experts. I feel invaded by depression that takes too long to wane. I feel invaded by the theft of my former self whom I will never get to know.