Thanks to Mikayla Cahill and Georgia Andrews, and reporter Zoe Madden-Smith, for this video and news story by Re News in Aotearoa New Zealand. Mikayla:
“Growing up I knew my body was different,” she says. “But that gave me a lot of pride and a really strong sense of self.”
Over time she grew to not only accept, but love the idea that she could both be a woman and an intersex person with testes.
“I learned to be proud of who I am. I worked relentlessly to celebrate my body for its difference. Because what’s the point in not loving yourself? Especially when you’ve been told you are different your whole life, you kind of have to, otherwise no one else will.”
She then experienced pressure to have surgery. Her story is important not only for it’s discussion of disclosure and unwanted surgeries in a jurisdiction that shares clinical institutions with Australia. The story also evidences the simplistic analysis of even senior clinicians – and an idea that is is not possible to be female or male with a body that is a little different – and the ways that they contribute to the isolation we first face as people with intersex variations.
“Doctors usually tell us not to tell anyone because they won’t understand because everyone in school is taught there is only female and male, XX or XY,” Mikayla says. “They don’t want us to be ridiculed.” […]
Aware of the impact peer support could have had when she needed it most, Georgia compiled a list of intersex peer support groups and handed it to her doctors, hoping they would pass it on to other intersex patients. But she says her doctor told her “I am not going to share these because I can’t trust the information that people are going to be given.”
The story also remarks on contested data on cancer risks associated with retaining gonads in people with complete AIS, citing a contribution we made to a 2013 Senate inquiry on involuntary or coercive sterilisation under our former name. Weidler, Linnaus, Baratz and others (2019) have since published a management protocol for preservation of gonads in people with AIS. The recommendations of the inquiry have, however, not been implemented by any Australian government. This is a matter of grave concern.
Carpenter, Morgan, and Organisation Intersex International Australia. 2013. ‘August Submission to the Senate Inquiry on the Involuntary or Coerced Sterilisation of People with Disabilities’. https://ihra.org.au/23387/august-submission-senate-inquiry-sterilisation.
Senate of Australia Community Affairs References Committee. 2013. Involuntary or Coerced Sterilisation of Intersex People in Australia. http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/index.
Weidler, Erica M., Maria E. Linnaus, Arlene B. Baratz, Luis F. Goncalves, Smita Bailey, S. Janett Hernandez, Veronica Gomez-Lobo, and Kathleen van Leeuwen. 2019. ‘A Management Protocol for Gonad Preservation in Patients with Androgen Insensitivity Syndrome’. Journal of Pediatric and Adolescent Gynecology 32 (6): 605–11. doi:10.1016/j.jpag.2019.06.005.