The lonely I in LGBTQIA
Daniel Scheffler unpacks the fight for intersex rights and visibility
There are the same amount of red heads as there are people who are intersex.
Let that sink as you think of all the red heads you know. Now think about what you know about the word ‘intersex’ - or what some people still call the dated and mythical term ‘hermaphrodite’ - especially if they perhaps have read Pulitzer prize winner Jeffrey Eugenides’ book, ‘Middlesex’. And today the intersex activists are bringing attention to the marginalised intersex community, their exact vernacular and all for a very good cause.
So what exactly is intersex? According to Egale Canada, an advocacy group that started in 1986, it refers to “a person whose chromosomal, hormonal or anatomical sex characteristics fall outside the conventional classifications of male or female.” Sometimes they are born this way, and other times it develops during childhood. As Emily Quinn says in her highly insightful TEDx talk, she has a vagina, but also balls. At age 10 she found out that she was intersex and was told not to tell anyone about it. And that’s one variant of so many. So, imagine it like this - it’s simply not ‘standard issue.’
The way to think about the I in LGBTQIA is to allow for a new way of thinking about the world to coincide with what one already supposedly knows about sex. “Human sex development is naturally diverse with many variations possible in genitalia, hormones, internal anatomy and/or chromosomes,” according to the Centre of American Progress’ (CAP), an independent, nonpartisan policy institute. And then also realise that even though intersex people are part of the LGBT community, they can also identify as heterosexual.
And lucky for us, Buzzfeed created a handy YouTube video explaining what intersex is, in the most concise way possible. The video starts by posing the question - “Guess which one of us has testes?” and then shares the dabbler explanation of what exactly encompasses the term, intersex. Worth watching.
And it’s high time that intersex can finally have its moment of awareness. The trans community - one could argue - has had good (and bad) coverage for the last few years, bringing to light (with the help of celebrities like Laverne Cox, and maybe less so Caitlin Jenner) the concerns and needs but also celebrations of the trans community. So this is simply the time for the intersex community to have their due. Not only did we recently find out that the 18th century Polish-American General, Casimir Pulaski, may actually have been intersex, Caster Semenya, the South African athlete, also recently released her memoir “The Race To Be Myself” as she still struggles with the World Athletics Federations to determine whether they deem her to be fit to compete as what they deem to be a ‘woman.’ She has been called ‘intersex’ by the media and various assigned gynecologists since 2009.
And then there is the Focus Features documentary, “Every Body” - inspired by David Reimer, a Canadian man whose botched circumcision led him to being castrated as a baby and raised as a girl. The film tells the story of three intersex individuals - who have “moved from childhood marked by shame, secrecy and non-consensual surgeries to adulthood” - actor and screenwriter River Gallo (they/them), PH.D student Sean Saifa Wall (he/him) and political consultant Alicia Roth Weigel (she/they). Their stories, their struggles and also their frolickings are woven together in a narrative that showcases their humanity.
Alicia Roth Weigel
And, in fact, the story that Alicia Roth Weigel shares with me over the phone is riveting. She was working for Texas politician Wendy Davis at the time when all of this happened. You remember the pink sneakers, right? Well that was Wendy Davis, and it was the year 2017 and there was a lot of work to be done in Texas. Well, whilst sitting in Davis' office Roth Weigel was quietly paging through Vogue magazine and saw this gorgeous model, Hanne Gaby Odiele.
Reading the model’s story Roth Weigel was struck by how crazy wonted it all sounded to her - hormone therapies, multiple difficult surgeries, an incredible need for secrecy around her body and everything related to it. But it wasn’t so unfamiliar to her, it didn’t read as anything utterly strange to her - it was seeming so bizarrely clued in on her. So, she made excuses at work and rushed home. And for the next six hours she spent venturing deeper and deeper down an Internet rabbit hole.
Roth Weigel always knew she was different, she was told so by her parents and by her doctors. But there was no word for it, no vernacular. Just a very big shhhhhhh don’t tell. She was told she had a complete androgen sensitivity and that she was born with testes (which they had to surgically remove to avoid cancer - a made up lie, by the way). But suddenly the article and her research gave her what she never had - a language for her difference, and her intersex identity was revealed. But so, where does she belong now? She’s on the fringe as she shares…not fitting neatly in a box. And thus she’s channeled it into a valid political cause - she came out in a Texas Senate hearing to the world for the first time, and discusses all of this and more in her book, “Inverse Cowgirl” plus now is an intersex activist who speaks out against surgical procedures performed on intersex children without their consent. And, of course, she credits Vogue as part-helping her to discover just who she is.
So what exactly is the essential cause of the intersex community? And what is their central issue? In the UK, according to Holly Greenberry, founder of Intersex UK, it is very simple: intersex people want bodily autonomy and not be repressed by a barbaric binary assumption of gender. “The NHS is still performing non medically necessary socially confirming binary focused surgeries without the child’s fully informed consent - with taxpayer money no less,” Greenberry adds.
Greenberry, who is intersex, has spoken all over the world, appeared extensively in the media, advised government and now been welcomed and supported to run as a Parliamentary candidate and is also a borough councilor, emphasizes that intersex is about biology. “The situation in the UK is dire, the patriarchal model around medicine plus all the scaremongering to parents mean that irreversible surgeries are being performed; which is a human rights abuse. We need serious funding, and grant managers, more community groups and local government policies, because the UK government has ignored us for too long.”
“I often say to people - stop, think about your genitalia. Literally just think what they look like, how they feel and work. Would you want someone cutting them? Reducing your sensitivities, diapering you and monumentally impacting on your mental and emotional health to a point of such challenge that it scars many daily aspects of your sense of self and life? That still happens in the UK” - Holly Greenberry, Intersex Activist
She explains intersex simply: “people are different, and their bodies are different, some have freckles, some are tall, and the same with genitals - we’re all unique.” And in the UK, at a school level for instance, kids are taught, this is a boy with a penis and this is a girl with a vagina, regardless of accuracy. But even before that, when people are pregnant the first question is: “is it a boy or a girl?” And thus the pigeonholing starts.
Holly Greenberry, founder of Intersex UK
And Greenberry is not alone, across the pond, according to Janik Bastien Charlebois (a Canadian sociologist, professor at Université du Québec à Montréal, advocate for intersex rights and someone who is intersex) it is also simple: “The most important issue for us is bodily autonomy. It's the protection of our physical Integrity.” And that is what everyone wants - a self-determination if you will. And that will mean the possibility to decide to do with our bodies what we want. And that includes very young intersex kids not having to lay on a doctor’s table and be prodded and poked without a real understanding by the parents or the medical world of what is actually necessary.
“At the age of seven, I endured things that no young person should have to when I was forced to undergo surgery because my body didn’t fit what doctors deemed to be normal,” said Morgan Holmes, intersex activist, professor and writer in a statement released by Egale. “The pain I endured, both physically and mentally, has lasted a lifetime - it’s something that no child should have to experience, yet today it is still legally sanctioned practice in Canada.”
Hence in Canada, the priority number one goal is to stop non-consensual interventions, shares Bastien Charlebois. And there have been rumors that they are trying to pass some legislation for exactly that - with the help of Egale Canada. For Egale, their focus has been on 2SLGBTQI people and issues, and it is in that spirit that they in 2019 sent a letter titled “65 Reasons: The Rights Of Intersex People in Canada'' to various lawmakers including the Honourable David Lametti, P.C., M.P., who was then the Minister of Justice and Attorney General of Canada. But he has since left that position and their entreaty might need new ears and eyes.
They then followed up by filing an application to the Ontario Superior Court to “challenge the constitutionality of exemptions in the Criminal Code that permit ‘normalizing’ aesthetic surgeries on intersex infants and children, prior to these individuals being old enough to themselves consent to such surgeries.” Amended in 1997 to explicitly prohibit female genital mutilation, the provision on aggravated assault exempts from criminal liability certain surgeries performed on intersex children for the purpose of normalizing their sexual appearance. Egale seeks to show that the exemption “violates these children’s rights to liberty, security of person, equality, and freedom from cruel and unusual treatment under the Canadian Charter of Rights and Freedoms.” The current law, they argue, “deprives children from criminal law protections against the mutilation of their bodies, and instead functions to normalize surgical interventions based on intersexist and binary assumptions about ‘correct’ or ‘normal’ bodies.”
“The way we treat intersex people in Canada is shameful,” says Helen Kennedy, the Executive Director at Egale Canada. “The surgeries we allow to take place on intersex children are on all counts a violation of basic human rights and considered torture by the United Nations - we expect better from our government.”
But not only the official channels, also the general public is sometimes treating intersex people badly. According to CAP’s nationally representative 2020 survey data of LGBTQI+ adults, “LGBTQ+ intersex individuals, when compared with their LGBTQ+ peers who are not intersex, experience higher rates of stigma and discrimination and high rates of engaging in behavior to avoid exposure to discriminatory treatment, such as avoiding going to the doctor.” And because intersex traits do not conform to binary sex and gender norms, stigma and discrimination when accessing health care is often an outcome, according to CAP’s data.
But besides for shame and bigotry one of the other issues that Roth Weigel shares is that there is not enough of a database of intersex people - and thus she is spearheading one of the first ever Mandated Reports by the U.S. Government which is now waiting for President Biden. Will he pick this up in an election year? We hope so. According to CAP, “the lack of available data on people with intersex traits and their experiences is a significant concern. Stigma around intersex traits also makes many intersex individuals unwilling to disclose their intersex status.”
And back in Canada the fight is to “bring policy in line with international standards on intersex rights'' according to Kennedy. And Egale is slowly making progress with their pleas. In 2018, Egale organized Canada’s first national intersex conference bringing together academics, researchers, intersex children, youth, and parents to identify the needs of the intersex community in Canada. And in the same year, they also put forward a submission to the United Nations Committee Against Torture “urging them to hold Canada accountable for its failure to comply with human rights law.” And their most recent effort is a public awareness campaign called ‘Fix Hearts, Not Parts’ - which according to Egale is to “raise awareness for human rights violations faced by intersex people and encourage everyone to take a stand against intersex surgery.”
Fix Hearts Not Parts campaign logo
But besides having the public and government on the side of progress for intersex people we also need the medical community to fully come to the party - and that will take legislation. “We have to find the right wording,” adds Bastien Charlebois. “My essays and articles are all highly critical of medical professionals' claim of authority on intersex management and I would never cater to it. The medical self-regulation prerogative is a fundamental tool of the violence they subject us to, because it allows them to do as they wish with impunity. They have no accountability to us or any other institution, only to their peers in the same specialties and practice.” There is simply not a standard set for the intersex community that can translate to medical care if necessary, but also perhaps they need a marketing campaign so that a broader spectrum of people can fully understand their wants, desires, fears, loves and lives.
But so much of this all starts with the need to not use pathologizing language in these clinical settings. Moreover, a study from researchers at Boston University Chobanian & Avedisian School of Medicine, shows that it actually harms intersex patients. In the study various researchers detail how often parents of intersex children are only given one option by doctors - cosmetic surgery. And as they detail in this study, instead of referring to intersex as a “natural variation” doctors often use medicalized terms which may make “parents more likely to opt for surgical interventions.” And thus the problem, a whole system that’s not supporting the root cause. Doctors and parents making decisions about human bodies without having all the information.
This road seems long, and there are no quick solutions to any of these important issues. Egale, Intersex UK and a few others, are raising issues that the government should be mindful of, and should address for the sake of equality.
Because without intersex equality, we’re simply not equal.