Caught in the middle

Although I am always meaning to write something about my experience as a woman with Androgen Insensitivity Syndrome, I am also a terrible procrastinator and with work and kids to juggle, a few tweets are usually the limit of my attention span.  Before starting this piece, I was also worrying about the best terminology to use to define myself, as even this has become a minefield.  Should I call myself intersex, or am I better defined as someone with a difference in sex development (DSD) or variation in sex characteristics (VSC)?  However, over the last few weeks I’ve felt that it has become increasingly important to write something, even if I use these terms interchangeably. 

Intersex lives have again been thrown into the many debates raging on Twitter about what it means to be a woman and my thoughts and position seem to be constantly misrepresented or vilified.  I have even seen my biology used to accuse JK Rowling of supporting the mutilation of intersex baby’s genitals and to compare her to Jimmy Saville and to validate the most horrific abuse as recorded here https://medium.com/@rebeccarc/j-k-rowling-and-the-trans-activists-a-story-in-screenshots-78e01dca68d.  Her crime has been to write the below tweet and an essay on her experiences as a woman. https://www.jkrowling.com/answers/

The toxicity of this debate has resulted in even well-respected academics who write about intersex issues, endorsing the belief that it is acceptable to refer to people like me in the most dehumanising ways.  This has even included calling the only charity in the UK working with children with different sex development, ‘trash’.  This has been deeply upsetting for those of us who work with children and families who are facing these incredibly complex issues. 

As a woman born with Complete Androgen Insensitivity Syndrome, Twitter is a difficult place.  There are now frequent arguments about what it means to have an intersex body.  On one side there are the debates about intersex women competing in sports and frequent comments such as “women’s sport is only for XX women” and even wanting to remove me from the sex classification I was given at birth.  On the other side, I am referred to as a hermaphrodite or described as a third sex or neither male or female – and my body is used to validate the most horrific abuse of women or to prevent women from talking about their own biological experiences.  I have witnessed my intersex body being used to validate rape and death threats being directed at women who want to discuss their sex based rights.  This has even included using my history to validate the homophobic abuse of lesbians who define themselves as exclusively attracted to women.  When I have asked for my biology not to be used in this way, I have been called ‘trash’, a freak and even a TERF, a term that has now become the easiest way to dehumanise a woman for her opinions. 

I have repeatedly been called transphobic for asking that intersex people are not conflated with trans identities, as this silences our voices, causes public confusion about our needs and concerns and even leads to the groups that support us losing out on desperately needed funding.  I have been told that I am a right-wing authoritarian in league with white supremacists, mainly because I think it is important to listen to the voices of mostly left-wing women in the UK, with long histories of social justice activism and working with vulnerable people.  These are absurd accusations and are similarly used to silence many women and their groups. 

I believe that anyone who identifies as trans should be supported and free to live without stigma and discrimination – and I fully support any adult who chooses to transition, if this allows them to live in the way that is best for them.  However, I also believe that I deserve my voice to be heard and my own story to be told.

The persistent online othering of intersex people

There is now a narrative that is continually repeated on social media, that states intersex people are neither male or female or a third, fourth or even fifth sex.  This is frequently repeated by people with no experience of intersex issues and these messages often include inaccurate information about our lives and bodies and frequently include discussions of our genitals, even referring to us as having “both sets of genitals”.  When trying to correct these misrepresentations, I am frequently dismissed, blocked or called transphobic.  It frequently feels that I have become nothing more than an interesting anecdote someone has learned about in a gender studies lecture – and they have not considered that people like me really exist & should be offered the same respect as everyone else.  We should not have our lives weaponised and used as part of a thesis, especially by people who have no interest in listening to our voices and will immediately block us on social media, if we do not agree with their analysis of our bodies. 

I agree that we have complex biological variations that do not sit neatly into binary boxes – and this can be incredibly distressing and isolating for newly diagnosed children and families.  People talk about intersex people being as common as red hair, but in reality, it is only a tiny number of children and families who are facing these really complex issues.  In the UK, only around 150 children are diagnosed with a difference in their sex development each year, which means there is unlikely to be another parent in your NCT group experiencing the same issues – and there is unlikely to be another child in your school or sometimes even in your town.  Parents frequently feel terrified and alone – and the othering language that is persistently used to describe their children, is likely to only increase their feelings of isolation.  If children with different sex development are to grow up without stigma, secrecy and shame, we need to ensure that their parents are well supported and treated with compassion and sensitivity.  By supporting parents, we are giving them the best chance to be positive advocates for their children. 

There are now numerous guides for schools that talk about the best practice for supporting transgender young people.  These all talk about the trauma of being misgendered or the pain that can be caused by not respecting pronouns.  We are told that not affirming someone’s gender is an act of violence and can lead to young people attempting suicide.  The latest advice from Stonewall also talks about “listening to the child or young person and following their lead and preferences”.  The Trans Inclusion Toolkit from Allsorts states “Follow the lead of the child, young person and if appropriate their family”.

It is hard to understand why people promoting these guides on how to best support trans young people, do not share the same empathy for children & young people with different sex development.  One recent comment stated that those of us arguing that it is wrong to force a third sex narrative onto all intersex people, have a “fear of being othered away from our female safety nets”.  This seemed to dismiss any of the trauma & real loss that many intersex women have experienced.  Born and raised as girls and then finding out as young teens that they could not have children & could have difficulty having sex due to lack of vaginal depth – as well as finding out about your chromosomes and internal testes.  You do feel ripped away from everything you thought was true about yourself.  It takes time to process this and grieve for these very real losses, before being able to put yourself back together again in a way that you can feel positive about living with a different body.  This can take time and patience and it is essential that anyone working with children and families facing these issues, is able to be compassionate and sensitive to their needs.  The current trend to other intersex people as a third sex or neither male or female, offers newly diagnosed children & families, none of the same empathy and understanding that is considered vitally important when supporting young people with gender dysphoria.  Information sent to schools, often includes the Genderbread Person or Gender Unicorn, which has intersex listed as a third sex, alongside ‘other’.  The Allsorts Toolkit references intersex, although the information they provide is misleading and even inaccurately implies that many intersex people transition as they have been misdiagnosed in infancy. 

I want people with differences in their sex development to have the freedom to define themselves in the way that is best for them – & to talk about their own experiences in the way that feels most authentic.  For some, this may be defining themselves as having a medical condition and believing that they shouldn’t feel stigmatised by this, any more than they should feel stigmatised for having diabetes or asthma.  They may want to work with health professionals to try and improve care for children and young people.  For others, especially people who have experienced traumatic & non-consensual surgery, any dealing with health professionals is difficult.  I can also understand that an intersex identity can be an important way for some people to reclaim ownership of their lives and body – and I fully support any intersex person to talk about themselves in this way.  It is also amazing to see young intersex activists proudly talking about their bodies and experiences and trying to form connections and support networks with other young people.  This is so inspiring for young people growing up with different bodies and can show them that they don’t have to feel ashamed or alone.  Our bodies do not need to be fixed and are usually healthy and fine to be left alone. 

What I don’t support is trying to force the third sex narrative onto all of us born with different bodies – and I am now seeing even women with PCOS and men with mild hypospadias having their biological sex questioned & debated.  It is important to recognise that we may need different narratives and perspectives at different times of our lives and that we are allowed the space to work this out for ourselves.  Most important for me is that we speak out against the constant debates about the nature of ‘what we are’ and instead concentrate on ‘what we need’. 

What do we need?

Intersex people are a diverse group and this is represented in our needs.  However, most us have a sex easily identified at birth and learn to live with our different body & are happy to stay in the sex in which we grew up.  Although a few intersex people may choose to identify in different ways, this is not a priority for most – and although sensitive and inclusive language is vital, pronouns and third sex markers are rarely a priority issue.  There are rare occasions when it is extremely difficult to determine the sex of an infant or when a difference in sex characteristics can be associated with an underlying life threatening medical condition.  These children and their families should not have their complex histories used or weaponised, without any consideration to the significant trauma they will possibly have experienced. 

From my own perspective, our main priorities are as follows:

1. Good psychological support for children & their families.  This is vital if parents are to be supported to be the best advocates for their children.  They need support to ask questions about any intervention that is recommended & to know that surgery isn’t necessary unless there is an urgent clinical need.  It is vital that they know it is OK to wait and to be offered the psychological support to help them discuss what is happening with friends and family.   
2. Any medical or surgical intervention offered should have robust evidence and consider the long-term risks and complications.  As with all types of surgery, this should be considered only when there is clinical need.  Do no harm should be prioritised for any intervention. 
3. Age appropriate information, stories & narratives should be available to support young people to describe their experiences in the way that is best for them.  These may need to be culturally sensitive and presented without judgement. 
4. Peer support for young people, so that they understand it is OK to grow up with a different body and that it is OK to ask questions.  They also need to be given honest and accurate information about their body. 
5. Allowing children & families to talk about their experiences in their own words and feeling that there are supportive places where their voices can be heard. 
6. Good medical care to support the very real medical complications that people with differences in their sex development can commonly experience.  This can include hormone levels, HRT, bone density, lack of vaginal depth, infertility and even hearing problems. 
7. Support for young people as they go through puberty & start to explore the possibility of sex and relationships.  This may include the use of dilators to increase vaginal depth & can require significant emotional support. 
8. We need more tolerance of different views amongst intersex people, so that we can feel comfortable to discuss our lives, helping to reduce stigma by not alienating the people that are in the most need of support. 

For more information about the needs of intersex people, see the 2019 report from dsdfamilies https://www.dsdfamilies.org/application/files/8015/5447/3715/reportdsdf-2019.pdf as this involved consulting with children, young people and adults living with different sex development and their families.   

What we don’t need

What we really don’t need is to be used, appropriated and even fetishised in debates about gender.  This results in our own humanity being lost in endless discussions about ‘what we are’ or ‘how we are classified’, with very little concern about ‘how we are treated’.  We should not be used as ‘gotchas’ in debates about gender identities and used to validate threats and abuse of women.  We should not be forced to describe our experiences according to beliefs in gender identities, especially as not all of us experience this and feel we are as much a complex mix of masculine & feminine traits as any other human. 

We should also not be used to validate the medicalisation of gender dysphoria in children.  I believe that my body was surgically altered as a teenager, based on the ideological belief that my body must match my gender or gender identity, which correlates with the many stories I read today of children born in the wrong body and needing ever earlier intervention.  My parents were even told that if I was given accurate information about my body, I would be suicidal – and therefore consented to all interventions suggested.  I am not arrogant enough to claim that I have all the answers and it is likely that transition is in the best interests of some children and young people. From my understanding of what is currently happening in the UK, the Gender Identity Service (GIDS), still has many sensible voices that are calling for robust evidence and want to ensure careful assessment and psychological support.  However, I am concerned about any groups that are trying to prevent open debate and are aiming to prioritise their ideological beliefs over the evidence.  This has the potential for significant harm, very similar to the harm experienced by many intersex people. 

Do these views, which I would not consider extreme, hateful, violent or intolerant – mean that I should be dismissed as transphobic & dehumanised as ‘trash’ or a TERF?  Have people become so intolerant, that even asking to have our own voice can lead to this abuse?  Has this debate become so toxic, that even discussing the very real ethical considerations involved with medical interventions in children, including sterilisation, can result in you being treated in this way?  It has been especially distressing to see people who claim to speak and work with intersex people, endorsing this language – and treating some of us as if we are ‘the wrong sort of intersex people’.

Most importantly, we need to remember that there are children and families experiencing these very real and complex issues – and it is vital that their wellbeing and needs are not lost in this never ending and increasingly toxic debate.