Intersex and the City

12/22/2015 02:40 pm ET Updated Dec 06, 2017

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Miriam van der Have is a married lesbian and mother of two. She came out publicly about being intersex on a television show in the Netherlands in 2003. Inspired by an openly transgender participant on Big Brother she told me with a laugh, "If she can do it, I can do it too!"

I met with Miriam in midtown Manhattan after a press briefing on transgender and intersex rights organized by OutRight Action International (OutRight), part of its 2015 U.N. Advocacy Week.

Co-Chair of Organisation Intersex International Europe, Miriam was among the 39 lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) human rights defenders from twenty-eight countries gathered by OutRight for Advocacy Week, which overlaps with Human Rights Day on December 10 -- the day in 1948 when the U.N. General Assembly adopted the Universal Declaration of Human Rights.

Miriam holds a Ph.D. in Mathematics, a fact she seemed shy to acknowledge even though she so easily shared more personal information. "If I had not had surgery when I was young," she told me, "I would probably not need hormones now. Medical interventions later in life are to make up for problems caused by doctors when we are young."

Morgan Carpenter, President of Organization Intersex International Australia also sat with us after the press briefing. His concerns contextualized Miriam's personal story.

"The pathologization of intersex characteristics is extremely problematic," he told me. "In places where medical systems are accessible, interventions are intended to make our bodies conform to social norms for a certain sex or gender. Doctors emphasize forcing people to adhere to social norms over quality of life."

"Doctors do what society asks them," Miriam interjected. "We have to change society to make it possible for doctors to change. I don't expect doctors to stop if intersex is not accepted by society."

Earlier during Advocacy Week, I met with Miriam and Morgan to learn the basics about intersex people. Though my professional career has always focused on advocating for the health, safety and well-being of LGBTIQ populations, Morgan and Miriam were the first people I ever met who came out to me about being Intersex.

Miriam explained that even though intersex is not rare, shame and stigma prevents visibility. "You have probably met intersex people, but they have not dared to tell you." As a result, compared to the growing awareness and understanding of LGBT people around the world, comparatively little is understood about those who are intersex, particularly in the West.

"Intersex people are born with sex characteristics that don't meet expected norms for male or female bodies," explained Morgan. "Our bodies don't meet the social expectation of what males and females look like."

"Intersex is about our lives, not about our bodies," interjected Miriam. "It's about our experiences because of what other people's expectations are about our bodies."

While asking a follow-up question about people who "identify as intersex," Miriam gently corrected me. "People do not 'choose' to be intersex, they are intersex."

They referred me to a U.N. intersex fact sheet that not only includes key definitions and prevalence data, but also summarizes the human rights violations experienced by intersex people around the world, including violations of their rights to health and physical integrity, to be free from torture and ill-treatment and to equality and non-discrimination.

As OutRight's Executive Director Jessica Stern said at the press briefing, "The human rights violations experienced by intersex people are from a category that could only exist in science fiction, yet they are a reality around the world."

This is why, when asked about the most important goals of advocates, Miriam and Morgan focused on the right to life and bodily integrity. In regions without accessible medical systems, child abandonment, infanticide and violence against mothers of intersex children are common. Where medical care is more available, infants and children who are born intersex are still being mutilated, whether through surgery, hormone treatment and/or psychiatric care.

"Because intersex is framed as a disorder within the medical model," Morgan told me, "the medical community is using the tools it has to make people fit into the definitions of 'sex' and 'gender' created by society."

He also emphasized that the need for change includes progressive communities. "The LGBT movement still falsely views intersex as a gender identity issue. Why do we think biological determinism is good for intersex people but bad for transgender people?"

In September 2015, U.N. High Commissioner for Human Rights Zeid Ra'ad Al Hussein brought unprecedented attention to intersex people at the first-ever Expert Meeting on Ending Human Rights Violations Against Intersex Persons.

When I started as High Commissioner a year ago, I knew little about intersex people. I don't think I was alone in this: it reflects a general lack of awareness. Too many people assume, without really thinking about it, that everyone can be fitted into two distinct and mutually exclusive categories: male or female.

But in fact, human beings -- like most living beings -- are more diverse and complex than that. Our diversity -- the differences between our experiences and perspectives, as well as the shapes of our bodies -- is something that we should celebrate and protect, in all its forms.

All human beings are born equal in dignity and rights. Those foundational, bedrock principles of universality and equality mean that all of us, without exception, and regardless of our sex characteristics, are equally entitled to the protections of international human rights law.

Morgan and Miriam emphasized repeatedly how critical it is for the recognition of intersex people to be rooted in fundamental human rights, beyond identity-based frameworks. As explained by Jessica Stern, changing her organization's name after 25 years from the International Gay and Lesbian Human Rights Commission to Outright Action International exemplifies this fundamental shift.

"We changed our name because rendering bisexual, transgender, intersex and queer realities invisible was unacceptable. We wanted to make clear in word and deed that our commitment is to the full spectrum of our community."

For Miriam and Morgan, this human rights framework is critical to moving society beyond the complex intersections of sex, gender and sexual orientation. Their advocacy is fundamentally about letting people be themselves and make their own decisions about their bodies.

"This is not a complex issue," concluded Morgan. "It's about our fundamental human right to life and to the integrity of our bodies."