Rise of the Intersex Activism

Fixing Sex by Katrina Karkazis

Chapter 8: Intersex, Medical Authority, and Lived Experience

Katrina Karkazis dedicates this particular chapter of her book, Fixing Sex, to illustrating the clashes between the conventional medical authority and practice and intersexual individuals. She also vividly portrays the hardships that intersexual people go through and how activism arisen from it brings about a transformation in the medical field concerning intersex bodies and psychology.

Karkazis says that the social and medical development of the idea and treatment of intersex individuals arose from the broader social movement of and changes in the attitudes toward gender and sexuality. The successful emergence of intersex to public attention partially owes to other diverse movements such as “the feminist and women’s health movements, gay and transgender movements, and patient health movements” which according to Karkazis, “influenced the development of challenges to the traditional treatment paradigm for intersexuality.” In fact, gay rights and transgender movements, such as those that can be seen in incidents like the Stonewall riot as well as the riot at Compton’s Cafeteria, sought to broaden the understanding and acceptance of non-normative gender roles and sexual desire. The Stonewall riot was exceptionally a significant movement as it advocated for “legal and social reforms such as stopping police harassment, ending the criminalization of homosexuality, and protecting the civil rights of lesbians, gays, bisexuals, and transgender individuals.” These numerous social and legal movements were further supported by scholarly works especially in the feminist theory which provided an analytical and theoretical basis for the critique of the traditional treatment paradigm for intersexuality. These works across various disciplines raised questions and challenges to the existing conventional scientific and medical knowledge for gender bias and destroyed the ‘cultural presuppositions’ about gender. Eventually, the authority of the medical personnel deteriorated and the power over medical decisions shifted to those of the individuals concerned.

As the intersex movement sprung with the help of other similar preceding movements, intersex support groups began to emerge with the help of the Internet. These support groups that varied from official organizations and foundations to small personal groups were not created for any radical or dramatic social change for intersexuality but to help intersexual individuals to alleviate their pain and live more peacefully, sharing their experience and mutually supporting each other. For example, ks&a, (Klinefelter Syndrome and Associates) described itself as an organization “to educate, encourage research, and foster treatment and cures for symptoms of sex chromosome variations”, focused on and dedicated to addressing one condition as many other organizations are structured. Even though these groups helped a considerable number of intersex people to alleviate their daily pain and live their life as a minority, some individuals have found them inadequate for addressing questions and problems related to their conditions/diagnoses. These are the individuals that sought to actively protest and oppose the conventional medical knowledge and practice.

The intersex activism started off by aiming to address the conventional medical model of intersexuality and treatment. In a way, they were fundamentally rooted in antimedicalization movement. The conventional medical system viewed the intersex body as an abnormality and something that has to be corrected through surgery in early childhood to conform to one of the binary sex categories, male or female. It was this fundamentally flawed idea that the intersex groups and activists tried to address and rectify by claiming that individualized physical rectification does not eradicate an intersex individual’s discomfort and “illness experience”. However, it is the change in the fundamental idea that intersexuality and intersex bodies are absolutely normal, as normal as heterosexual bodies. 

The End.