Issues and Challenges in US Activism

Issues and challenges in US activism


Hida Viloria, Chairperson, Organisation Intersex International – OII

Unlike most other minority groups, the most tangible discrimination which intersex people have faced has been the imposition of nonconsensual medical procedures upon our bodies. This is partly responsible for why some have viewed the discrimination intersex people face as a medical, rather than human rights, issue.  However, portraying intersex variations as “medical issues” prejudicially assumes that there is something negative or undesirable about our bodies.  

Note:  The majority of medical treatments which intersex infants and children receive are cosmetic genital surgeries and/or hormone therapy which are done in an attempt to create “normal” male or female bodies.   There are  few instances in which intersex variations pose the need for immediate medical attention for the child’s health and safety, and in these cases we, of course, support children receiving the medical care they need.

People who support our right to autonomy and object to non-consensual medical alteration of infants and children often wonder how these procedures are allowed to continue, given what we have heard from countless intersex adults who were subjected to them. The answer is simple: in today’s legal system, parents have the legal right to make these decisions for their children. Unfortunately, parents of intersex children, like all parents, often want their children to fit into sex and gender “norms.”

Just as with female genital mutilation, it is only by opening peoples’ minds to the fact that our bodies are fine as they are (again, with the exception of the minority who have health issues related to their variation), and that procedures to change them and/or control our sexuality are not helpful but harmful, that we will see their decline. However, although many advocacy groups want to help intersex people, there is often a subtle, or not so subtle, assumption that there is something wrong with us.  Rather than presenting intersex differences as the human variation that they are, they are presented as problems.  One group even talks about “finding the cure,” and some groups reject identity politics, saying that intersex differences “are not about gender, but rather, medical conditions,” or even worse, disorders of sex development (DSD).

The dynamic of distancing intersex from issues of gender and identity seems very similar to me as that of the early gay and lesbian rights’ movement in the US, in which socially conservative gays and esbians tried to distance themselves from drag queens, butches and other non-gender conforming queers – despite the fact that these were the very people who initiated the Stonewall riots which started the gay civil rights movement here. Gay/lesbian gender conservatives tried to ban gay/lesbian gender variants from Pride parades and other visible events in order to present a “respectable” – i.e. normatively gendered – image of homosexuality to the homophobic opposition. Despite their activism, they still felt that there was something wrong with gays and lesbians whose gender expression challenged the mainstream’s, and they did not fight to protect their human right to expression.

While most intersex adults today express a typical social gender identity as “men” or “women,” it must be stressed that it is difficult not to do so in a society in which other options are not available and/or are dangerous to express. Also, this is no reason to devalue the existence of  those who do not identify as men or women. That approach is not only discriminatory, but is bound to fail because it does not address the fact that you cannot escape discrimination by trying to fit yourself into your oppressors’ ideals. In the black community in the US, those who conformed in this way were called “Uncle Toms,” but their tactics didn’t work. The US did not see the rise of a black president when blacks were trying to emulate affluent white culture: it happened after hip-hop and other art forms had popularized unique aspects of black culture and made them acceptable. You can only gain equal rights as a community when you are valued with your differences and unique qualities intact.

Some intersex people ignore or deny the fact that the discrimination we face – similarly to the rest of the LGBTI community’s – is predicated by homophobia and non-traditional-genderphobia.  However, the original medical articles that promoted “normalization” of intersex bodies dis so because, to quote from an influential book on the topic of intersex medical management:

That a newborn should have a deformity… {affecting} so fundamental an issue as the very sex of the child… is a tragic event which immediately conjures up visions of a hopeless psychological misfit doomed to live always as a sexual freak in loneliness and frustration.1

Indeed, whether or not there is anything different about the social gender identity of someone with an intersex variation, most people assume that there will be when they hear about intersex variations. So why waste time avoiding that? I’ve always thought it’s more effective to confront prejudice head on, and this has proven to be true in other communities.

Today, the movement for intersex civil rights is gaining momentum, and I find it very exciting. I think enough of us have been coming out, and enough has subsequently been written and filmed about us with our own perspectives taken into account, that people are starting to not only know that we exist, but also to question the ways we have been, and still are, treated. I think many believe that the way the medical establishment and others have treated us is unethical in its denial of the simple truth that biological sex is not simply “male” or “female.” As more and more people become aware of this, it becomes clearer and clearer that our right to self-determination and self-autonomy is a human rights issue.

I believe that within five years the entire world will be aware of the intersex population, and that we will be openly regarded as just another of the many minorities within the human species. Like other minorities, we may still face prejudice from some, but I know that acceptance of our community will be continuing to increase, as it is right now. As this happens, parents and caregivers will begin to see us for the unique expressions of human diversity that we are, and allow us to make our own decisions about our bodies, and our futures.

[1] The intersexual disorders. By Christopher J. Dewhurst, M.B., F.R.C.S. (ed.), F.R.C.O.G., Professor of Obstetrics and Gynaecology, Queen Charlotte’s Maternity Hospital, and Ronald R. Gordon, M.C., M.D., M.R.C.P., Consultant Paediatrician, United Sheffield Hospitals. 10 × 7 in. pp. 162, with 64 Illustrations. 1969. London: Baillière, Tindall and Cassell.