The Intersex Rights Movement

- Episode 13- Transcript

Georgie Williams, in voiceover: The following episode contains trigger warnings for the discussion of castration and non-consensual surgeries. Please proceed with caution.

There are five countries in the world where intersex people have a right to bodily autonomy. Can you name them? Uruguay, India, Albania, Malta and Portugal are the only safe havens on the planet for intersex individuals- individuals born with a hormonal, chromosomal, gonadal or genital variation which is considered outside of the male and female norms. These natural variations occur in 1.7% of the global population- more than 1 in 100 of us, which is the same incidence rate as redheads. If you’ve met a ginger person before, you’ve just as likely met an intersex person. 

Intersex is profoundly misunderstood. Incorrectly labelled as a gender identity or sexuality, the rights movement surrounding this subject is hampered by a lack of public understanding. So the question we're asking today is, what does it mean to be intersex? And how do we turn the tides on intersex rights? Welcome to Episode 13 of /Queer. You’re here with me, your host, Georgie Williams.

If you are unfamiliar with the topic of intersex, it is with good reason. The stigmatisation of intersex finds its roots in oppression, and the history of the medicalisation of intersex is a long and fraught one. Anxieties over sex, gender and race in the 19th Century sparked a frenzy of pseudo-scientific work which sought to identify biological differentiations between races and between genders, often as a means of justifying patriarchal and white superiority. Indeed, gender distinction has a history of being implemented with the intention of upholding primarily white standards of physicality as the norm. Scholar Anne McClintock, in her book Imperial Leather: Race, Gender and Sexuality in the Colonial Conquest states that physical anatomy, including genitalia, became areas of supposed research and investigation to determine these aforementioned gendered and racial differences- and that conclusions drawn about said differences inferred inferiority and even a lack of civility in those whose bodies defied the established norm. Throughout this podcast, we have often discussed the concept of one’s body as a site of regulation and intervention based on matters of gender, sexuality, race and physical ability- but the intersex body is perhaps one of the greatest sites of conflict in this regard.

When we mentioned bodily autonomy for intersex people at the start of this episode, what we were talking about was the right to decline surgery. It is still standard practice in the United Kingdom and in the majority of countries around the globe for intersex children to be operated on without their consent- with these unnecessary surgeries ranging from cosmetic procedures on genitalia to medical castration. Cheryl Chase, a prominent activist for intersex rights and for the banning of non-consensual surgeries on intersex children, has often spoken of her own experiences with intersex surgery and its detrimental effects. Chase points out that often doctors justify their interventions by pointing to the supposedly likely social harm and stigmatisation caused by deviation from sex norms, and often fail to acknowledge the irony that in doing so, these same doctors perpetuate such stigmatisation. Chase is keen to show that intersex bodies experience more concrete harm at the hands of medical professionals than they do socially. Chase states “the harm begins when the birth is treated as a medical crisis, and the consequences of that initial treatment ripple out ever afterward”.

Although the subject of intersex is a growing field of academic research, there is undeniably ground to be covered in regards to bringing the subject of intersex welfare into the mainstream- and to do so, you have to start with the platforming of intersex voices.

Sean Saifa Wall, in interview : My name is Sean Saifa Wall, I’m originally from the Bronx but moved around the US like I went to school in Massachusetts, I lived in California for like 9-10 years and I lived Atlanta, Georgia for almost 8 years before moving to here, Manchester, England, where I am pursuing a PHD looking at the erasure of Intersex people from social policy in the republic of Ireland and England. More than anything else I am an intersex activist, I am queer, I am the youngest of 5, now 4, children, and I am living during a pandemic. Who knows what my story will be, how it will end but yeah I am grateful for the experiences I have had, that have brought me to this place right now.

Georgie Williams, in voiceover: Saifa’s incredible work on the Intersex Justice Project is changing the conversation surrounding the welfare of black and intersex people of colour. It was Sociologist Zine Magubane who argued that historically, black gender distinction through the body was not seen to be important enough to warrant surgery, while white gender distinction was vital for the maintenance of white superiority. In not surgically altering Black intersex bodies, white doctors were able to maintain the imagined inferiority of Black bodies through their lack of gender distinction, and through their supposedly ‘abnormal’ bodies. This is not to suggest that enforced surgery on all intersex bodies would be appropriate or in any way acceptable, but rather that the subject of intersex is a fraught with racial tensions that need to be addressed. The Intersex Justice Project, through the raising of awareness and the celebration of black and intersex people of colour, is opening up the intersex conversation at the intersection of sex, gender and race.

Georgie Williams, in interview: What are some common misconceptions about lived experiences of intersex that you would like to address? 

Sean Saifa Wall, in interview: I think just to start off, people don’t know what intersex is. Like when I have a conversation with people I’ll be like “oh, I’m intersex,” They’ll be like “huh?!” and I’m like “well, it’s kind-of like what people think of when they think of hermaphrodite” and they’re like “oh yeah yeah yeah! I know what that is, you have both sets of- you’ve got male and female, you’ve got a penis and a vagina!” and I’m like “oh nah, that’s not what’s happening, but, ok”. You know? So, I think our understanding of intersex is very limited and I think that we don’t know about the lived experiences of intersex people because of the erasure of intersex people by medical practitioners. Just to concretise that more, it’s like literally the physical erasure like when a child is born there’s a sort of social emergency that’s created, and whether its doctors or parents, parents and doctors, like that child – if they’re physically intersex at birth, they’re subject to (often) permanent, damaging, harmful medical interventions.

I remember in 2013 when me and other activists sort of convened in Malta and I think that was one of the first times I’d met other intersex activists in person, cos I think a large part of our movement has been made possible because of social media and the internet, and I remember sort of hearing people’s experiences and if you can, imagine what it must be like to have multiple surgeries done on your genitals, it’s traumatising. And this is part of the lengths that medical practitioners will go to and when I say ‘medical practitioners’ I’m talking about paediatric urologists, endocrinologists, paediatricians everyone who is involved in the decision making of this child. It’s literally sort of reinforcing the gender binary on the bodies of intersex people, children, who become intersex adults. So, for me, I think it’s communicating the lived experiences of intersex people. But also, opening the conversation about what intersex is. 

So, just to start off, intersex is a set of sex characteristics, like hormonal, chromosomal, gonadal, genital, that are a-typical for male and female. And because of that a-typicality, often is why, children are subject to harm. So, I think in having the conversation about intersex, I think it’s communicating to people that the most visible are harmed. Similar to the trans community, it’s like the most visible who are gender non-conforming in the trans community are more subject to harm, so violation to violence, right? And also, kind of expanding this conversation, because when we look at the definition of intersex it can literally be anyone, it doesn’t necessarily have to be people who have ambiguous genitals because I often talk to people who tell me ‘oh, I have ovarian failure’ or ‘I have this’ or ‘I have PCOS’ and I’m like, oh, don’t you think that could be an intersex variation? And they look at me and they’re like ‘but I didn’t have that surgery’ or ‘I don’t have ambiguous genitals’ and I’m like, “that’s not what makes someone intersex”. So, I think in short, there’s so much education that needs to be done, to actually inform the populist about what intersex is and what it could be.

Georgie Williams, in interview: What are your hopes for legislative reform and social awareness, particularly in the UK pertaining to intersex, so, what do you feel needs to change? In particular, what are your hopes to change within medicine?

Sean Saifa Wall, in interview: hmm, yeah I think coming from the US and living in the UK I haven’t really experienced the UK as of yet, because this is like my 2nd lockdown, the 2nd lockdown of 3 national lockdowns! *laughs* so I can’t speak on the landscape as far as what it means for intersex people here, but what I can share in the time that I have been here is that we’re in a really interesting moment, where the NHS opened a consultation on intersex. And they invited people from around the world to weigh in on this issue of surgery because they’re contemplating whether they should continue funding these surgeries. And I think that’s huge, right? Because if the NHS decides to take a stand… and mind you, we are in a conservative state *laughs* it will probably be related to money and wanting to cut expenditures, so I’m not going to sort of fool myself around that, but I think it could be a really positive step because it will stop some of the harm. And I think for me as an activist, stopping the harm is like, the most important. Because, what becomes possible when we allow intersex variations to exist?! I think it really could expand our awareness beyond male and female but also kind of allow just natural variations to just re-emerge. Because human beings are like plants, we’re so diverse you know? And our attempts to box people in to just 2 genders just doesn’t make sense because our bodies are so complex and so I think for me, I would want… and I think because the NHS is part of the stake, I think I would want for medicine to sort of remove itself – I would want intersex to exist outside of medicine. I would want intersex to become a social category again. Because at one time in England’s history, during the 17th century, sir Edward Coke… referred to them as ‘hermaphrodites’ which was problematic, but that’s the language they had at the time, and they were named in law. Now, mind you, they had to pick a gender. It was still a binary gender system, but there was a recognition of intersex people in England. And I would want intersex people almost rise again, I would want the categories – just like we’re starting to recognising that gender can look like all these different ways, I would want it that biological sex, and sex, can also look different. It doesn’t have to be male and female. And I think that’s what the trans community reminds us of, and I think that’s what the intersex community reminds us of. It reminds us that biological sex doesn’t exist, its made up! You know, It’s a fabrication. 

Yeah, and I think more than anything else, I want the opportunity for intersex people to heal. Because you know as co-founder of the intersex justice project, one, it’s about stopping the harm, getting practitioners to apologise for the harm that they’ve done and also offering reparations and repair for the harm that has been done. Because, I was in a call with some people from my cohort today, half of whom are intersex, right? And, basically, it doesn’t stop with one surgery, it’s never just one surgery. And that one surgery leads to other surgeries. And that one surgery, affects future moments in that person’s life. 

So for me, I was castrated at 13, I was put on feminising hormones, I took myself off feminising hormones, I started taking testosterone, testosterone doesn’t do the same for me as my testis did, I have had periods where I had health insurance coming from the US, there are periods where I have had health insurance and there are periods where I have not had health insurance. As a result of being castrated at 13, I developed osteopenia which is a precursor to osteoporosis. So that one surgery, when I was 13 years old, has affected all of these other things in my life. Similarly, with people who have had genital surgery, which I fortunately had been spared from, is not only this one event, right, it’s PTSD from having your body violated in this way. It’s lack of sensation, it’s scarring, you know? And so, I think I would want healing for intersex people because what we have experienced is not normal. We are normal, but what happens to us, is not normal. And I think that for me, is what needs to change. It’s addressing the harm, and it’s shifting the society around us to actually accommodate intersex people and accommodate intersex identities so that we can prevent future harm.

Georgie Williams, in voiceover: As you may expect, Saifa’s experiences are not unique or outside of the norm for an intersex child. As previously mentioned, Cheryl Chase has highlighted the very real psychological effects of these interventions in discussions of her own experiences as an intersex child. Chase was born with ambiguous genitals and, after medical examination, it was decided by her doctors and her parents that she was a boy and would be raised as such. Then, when she was just a year old, her doctors re-evaluated her genitals and decided that her ‘penis’ was too underdeveloped to be male and that it was in fact an enlarged clitoris, consequently advising her parents to start raising her as a girl and to erase all trace of Chase ever being a boy. This meant destroying all photographs of her before the age of one, moving cities, changing her name and birth certificate, and uprooting every part of their lives to perpetuate the fact of Chase’s femaleness. As a child, Chase underwent multiple invasive examinations and procedures, the details of which I have chosen to omit from this episode due to their graphic and overtly abusive nature. It was only when in her 20s, after issues with sexual dysfunction as a consequence of her surgeries, that she sought her medical records and found out this history, which lead to what Chase described as a deep “emotional agony” over her womanhood and her identity. Chase’s story, like Saifa’s, evidences the psychological and emotional trauma that medical interventions often generate in intersex bodies. While being careful not to generalise all intersex experiences, for each is clearly unique, this right to autonomy and agency over one’s own body is undeniably a right many intersex individuals have been denied.

Georgie Williams, in interview: I can’t speak from an intersex standpoint  but I have lectured on the subject before and what I’ve said before is specifically to nursing students is, it is so important that parents, in particular, of intersex children know that their child is one in a hundred more likely, than one in a million. That this is not some great anomaly per say, this is just a sex and that there doesn’t have to be anything [Georgie sighs] inherently… what’s the word I’m looking for? Deviant, I guess? About being an intersex individual and that you can do more for the quality of life of your child by accepting and supporting them exactly as they are, than in a state of panic, trying to have your child to present in a way that aligns more with a sex binary which ultimately is a fallacy.

Sean Saifa Wall, in interview: Right.

Georgie Williams, in voiceover: Beyond bodily autonomy, the second front on which the intersex movement focuses its attention is the fight against the simultaneous stigmatisation and invisibility of being intersex. As Saifa stated, most people would be familiar with the outdated term "hermaphrodite" than "intersex". As it stands, intersex is not a legally recognised group of people in the same way men and women are in the United Kingdom. This legal status creates many complications, not least in allowing doctors to surgically direct intersex bodies into aligning with the at-times reductive standard of what constitutes a man or a woman. As Saifa mentions, there are overlaps with the intersex and trans experiences, both binary transgender and nonbinary. Legal recognition and visibility are paramount when it comes to securing the rights, freedoms, safety, security and quality of life of transgender, nonbinary and intersex communities.


Georgie Williams, in interview: So, my final question, and you touched on this already a wee bit, is what is the ideal future for an intersex person?

Sean Saifa Wall, in interview: I feel like the intersex movement, and of course within a movement there is different opinions, right I think different people have different pathways to liberation and self-realisation. I know for me, what feels important as an activist, is to honour consent because I feel like a lot of people who have been subjected to these surgeries have not been able to consent, like, the consent has been taken away from us. The consent was given to parents and if the child did not have parents the consent was given to state workers who made these decisions on behalf of these children. So, I think for me, a future for intersex people would involve making informed choices about their body. because here’s the thing, intersex people, like non-intersex people want to have surgeries, gender affirming surgeries, or just cosmetic surgeries, you know, like intersex people are not exempt from that. Intersex people want to have procedures, not all, but people should be able to consent to surgeries that they want and not surgeries they don’t want. And I think it all falls under the category of bodily autonomy. Intersex people deserve bodily autonomy, everyone deserves bodily autonomy. And I think a future of intersex people would look like having sovereignty about their bodies and existing in a world that does not stigmatise intersex people. Because there’s SO many intersex people, there’s so many intersex people in the world – there’s so many intersex people who are taught to live in shame, and in silence, because of who they are. 

But if anyone is listening to this, I want you to know there’s nothing to be ashamed of and the shame you carry is not yours. This is shame that was bestowed upon you by medical practitioners, by your family unit, and it doesn’t belong to you. So, I want a world in which being intersex is just as regular as being, I don’t know…having brown hair, having brown eyes, or having any kind of eyes. Where people just not trippin’, where people are just like you know, oh this is just another intersex person. And I want intersex people to find love, and have families and yeah, just know that it’s the society that needs to change and that society probably will change to accommodate intersex identities, I think that’s what we deserve. That’s what we deserve. That is what is owed to us, especially those of us who have unjustly suffered.

Georgie, in interview: Amazing, that’s great and so eye-opening as well. Especially talking about not just ensuring that people don’t have to, aren’t forced into surgeries they don’t consent to but also having access to surgeries they do want as well.

Sean, in interview: Totally!

Georgie, in interview: I think sometimes there’s a naturalism discourse that can be harmful, the idea that, you know, intersex people yes can be allowed to have bodily autonomy, but then, they should be comfortable with exactly how they are as well.

Sean, in interview: Right!

Georgie, in interview: I think that can also be harmful. I feel like I’ve learnt so much from this, so thank you so much for your time and your insight and for all the work you do in the intersex justice project as well.

Georgie Williams, in voiceover: After our interview, Saifa and I further discussed the kinds of environments that facilitate the abuse and neglect of intersex children and youth. We discussed how it is often stated that medical fields can sometimes attract individuals who seek power over others- often affording them the opportunity to abuse that power. The power wielded over intersex individuals by their medical practitioners cannot be disentangled from the presumed objectivity of these practitioners- the assumption that doctors, clinicians and other medical professionals are capable of being 'unbiased' and 'logical'. Of course, this purportedly clinical approach to care is bolstered by the fact that, at least in the West, modern medicine has long been a field dominated by white men. Like any other social group, the knowledge and insight produced by this demographic will undeniably be influenced by their biases, lived experiences and social values. Believing that intersex children require non-consensual surgery is a value- grounded in, amongst other things, what an individual perceives quality of life to be measured by. I'd like to add here that in intersex medicine, what defines a 'functional' vagina is one which is able to accommodate a penis. Forcibly changing a child's body to align with cisnormative, heteronormative and ableist perceptions of the ideal body is a decision grounded in the values of a community- values which absolutely have to change if intersex individuals are going to be granted the opportunity to heal that Saifa called for. Intersex bodies are pathologized, reduced down to a subject of medical scrutiny- so to see platforms such as the Intersex Justice Project celebrating intersex people as more than a sum of their parts is a joy to behold. In the meantime, the fight for those basic rights continue in hospitals and in courtrooms around the world.

Saifa described the hegemonic white male community of doctors as a medical fraternity- and his experiences, as well as those of many other intersex people, speak volumes about how that fraternity operates. The tides are slowly changing, and opportunities for the voices of intersex individuals to be heard are emerging. But when 1 in 100 of us is at risk of this kind of treatment, without our consent and against our will, we must go beyond the prevention of unnecessary medical intervention. If 1 in 100 babies born are intersex, our nurses should be taught about what this means. Mainstream education should integrate intersex-aware curricula and prospective parents should know not only how likely it is that their child could be intersex, but also that there is nothing to fear about raising an intersex child. Normalisation and acceptance starts with the conversations we have, our willingness to make that which is taboo something to celebrate. Saifa said that people are like plants- and that our variations, our differences, were an asset instead of a deviation to be quashed. We should be excited at what makes us unique- we should all want to encourage the acceptance of different bodies. If you're not intersex, your children could be. Your siblings, your friends, your loved ones. There is space for all of us to be exactly who we are- without intervention. The power to turn the tides on intersex rights lie with all of us. 

This episode of the /Queer Podcast was edited by Sam Clay, transcribed by Bronya Smith, co-scripted and produced by myself and Matt Thompson and hosted as always by me, Georgie Williams. A very special thanks to Sean Saifa Wall from the University of Huddersfield for his contributions to this episode. Thanks once again to our Patreon subscribers whose continued support has helped this project grow in ways we could never have imagined. If you’re not a patron and want to support the podcast, you can find the /Queer Patreon at patreon.com/slashqueer. That’s S-L-A-S-H Queer. The link is also available on our Facebook, Instagram and Twitter pages. We do still have merch available and are taking donations via Ko-fi and you can find the links to both in the description for this episode. Even if you aren’t in a position to donate, we’re so grateful for every like, listen and share, so thank you.

This episode was recorded on location in London, the United Kingdom. Music in this episode was composed by Kevin MacLeod. If you enjoyed this episode or have any feedback, please get in touch on Instagram or Twitter at @SlashQueer or email us at slashqueer@outlook.com. As is our standard- stay kind, stay radical and stay queer.