The Invention of Intersex

The below essay is very quickly written and still very much a work in progress, but I felt it was important to share some of this information as part of Intersex Awareness Day. 

As someone born with Complete Androgen Insensitivity Syndrome, I had until recently felt fairly neutral about the term Intersex as I could see its value as a political label and as a way of understanding the bodies of those of us living with complex variations of sex development – and I have found it amazing to see young activists embracing and celebrating their bodily differences under an intersex flag. 

However, the recent appropriation, misrepresentation and even fetishizing of ‘intersex’ has led to me increasingly believing that the term is doing more harm than good.

I am also increasingly contacted by young people, adults and new parents that have never met anyone else with the same variation of sex development, possibly as they do not feel represented by current activism that focuses only on those who identify as intersex.  Peer support can be hugely valuable – and I would like this to be available for all, regardless of how they identify. 

I do not mean this essay to be a criticism of people using the term intersex to describe themselves, however, I am critical of using intersex to describe babies and children, who do not have a choice.

Does the I need to be more Inclusive?

On Intersex Awareness Day, I want to start with what has sadly become a controversial statement. 

I want to support ALL people born with variations or differences of sex development (DSD) and not only those who choose to identify as intersex.  I want to ensure that all children born with differences in their sex or reproductive development, get the family, psychological and peer support they need, to make informed choices about their healthcare.  Most importantly, I want them to have access to accurate and precise information about their bodies and to have the opportunity to meet other young people who share their experience. 

For this to be possible, there needs to be activism, advocacy and academic research that is truly inclusive and centres the children and families most in need of support – and listens to a diverse range of voices and not only to adults who identify as intersex. 

What even is Intersex?

Even the definition of intersex is contentious, poorly understood and defined – and although the lack of a clear definition is often explained as being ‘inclusive’, this is frequently leading to the children most in need of support, being lost in a sea of debates about gender identities or whether or not sex is a binary, bimodal or a spectrum.  Every single part of the body can vary in shape, size, and function – and this can vary from slight cosmetic difference to life threatening complications.  This is no different when considering variations in the development of the reproductive system – and yet differences associated with this part of the body are increasingly politicised and presented as an identity, that you can choose even without any anatomical difference.  

Prior to the 2006 Chicago Consensus Meeting/Statement, the term intersex usually only applied to the 0.02% of the population, living with the most complex variations of sex development, as detailed in the figure below. 

The term Disorders or Differences of Sex Development (DSD) was proposed to replace the previous umbrella terms that included, True Hermaphrodite, Male Pseudo-hermaphrodite, Female Pseudo-hermaphrodite and Intersex – as many parents and patients had criticised the terms as being stigmatising and out of date, as well as the automatic associations with being “between the two sexes”.  The term DSD also allowed the inclusion of conditions such as MRKH, that share many common features.  Using the word disorder was criticised, including by the representatives of the AIS Support Group in the UK http://web.archive.org/web/20170117130415/http://www.aissg.org/15_ANNOUNCE.HTM#16%20Aug%202006 and they suggested that difference, diverse or variation of sex development may have been better options and difference or diverse has increasingly replaced disorder in research and patient information.

Although the term DSD is frequently used within medical research, most healthcare providers use condition specific language when talking to patients and their families – and this is usually preferred by people living with variations of sex development, possibly as this is the most useful way for them to describe and understand their bodily differences. 

Although some adults reject any medicalisation of variant sex development, especially when this is described as a disorder, many others living with variations of sex development, as well as their parents and health professionals, feel that the term intersex is also inappropriate and increases a sense of stigma and isolation. https://www.europeanurology.com/article/S0302-2838(16)30179-8/fulltext This is illustrated by only 5% of women with classical CAH feeling like they are part of the intersex community https://www.jpurol.com/article/S1477-5131(20)30536-2/pdf – and recent research showing that only 10% of young people either like or use the term. https://www.tandfonline.com/doi/full/10.1080/13691058.2021.1899529 Research from DSD-life also found intersex to be the most problematic term when patients were offered a choice between intersex, disorders of sex development and differences of sex development. https://www.dsd-life.eu/fileadmin/websites/dsd-life/images/Flyer/lay_abstract_terminology_Final.pdf   

More recent research, again found that intersex was the most problematic term and that the preferred umbrella term was variations of sex development. https://www.auajournals.org/doi/10.1097/JU.0000000000001076

However, although the term intersex is not used by most people born with a variation of sex development, many activist and support groups have intersex as part of their name – and can be critical or even hostile to anyone using DSD terminology.   Although I can understand that some adults strongly identify as intersex, not creating a space for people who view things differently, for example seeing themselves as someone with a medical condition, can result in many people feeling excluded from the groups that are supposed to support and centre their needs.

Possibly as a way to feel that they are being inclusive, intersex groups, academics and policy makers have changed the definition of intersex to include an ever widening group of people – and increasingly imply that intersex is an identity that is open to everyone, even based on an internal feeling.

The most common statistic used in the media, is the 1.7% from Anne Fausto-Sterling, https://onlinelibrary.wiley.com/doi/abs/10.1002/%28SICI%291520-6300%28200003/04%2912%3A2%3C151%3A%3AAID-AJHB1%3E3.0.CO%3B2-F which frequently leads to the statement that being intersex is as common as having red hair  However, this does not clarify that the majority of the 1.7% have late onset CAH, which does not present with atypical sex development, but presents most commonly in adulthood in a similar way to Polycystic Ovary Syndrome (PCOS). 

However Polycystic Ovaries has also been brought under the intersex umbrella and was the most common intersex condition in the Australian Research “Intersex Stories and Statistics”, which is frequently quoted in academic journals about intersex. https://ihra.org.au/30313/intersex-stories-statistics-australia/

The ILGA-Europe have gone one step further and define intersex as:

“Intersex individuals are born with physical sex characteristics that don’t fit medical or social norms for female or male bodies. The variations in sex characteristics may manifest themselves in primary characteristics such as the inner and outer genitalia, the chromosomal and hormonal structure) and /or secondary characteristics such as muscle mass, hair distribution and stature” https://www.ilga-europe.org/sites/default/files/Attachments/intersex_final_position.pdf  

If intersex is referring to a variation in secondary sex characteristics, does this not make almost everyone in the world intersex at some level as detailed in the figure below?  This may all sound lovely and inclusive, but it is likely to prevent the children and families most in need, from getting support and funding. 

As well as intersex having no clear definition, the term is also frequently misunderstood to refer to gender identities.  This was highlighted in the recent paper by Peter Hegarty https://psycnet.apa.org/record/2020-57692-001 that found the term intersex was frequently understood as referring to social or gender identities.  Emi Koyama also noted that it was more common for people without a DSD to identify as intersex, than those with a DSD, who mainly see themselves as men and women with a medical condition. http://www.ipdx.org/articles/letter-outsidein.html

An essay by Traci O’Keefe https://ihra.org.au/13651/isgd-and-the-appropriation-of-intersex/ even encouraged people to identify as intersex as a way to ‘mess with the system’ – and even stated that ‘intersex’ people who objected to this were transphobic. 

Research

Self-identifying as intersex, without a DSD, is not uncommon https://www.tandfonline.com/doi/abs/10.1080/19317611.2011.629287?journalCode=wijs20 and this has a big impact on representation and research.  The European Union for Fundamental Rights (FRA) recently ran a large survey asking people to self-identify as intersex. https://fra.europa.eu/en/publication/2020/eu-lgbti-survey-results The results from this survey, illustrated that only one third had a DSD diagnosis, one third had seen a doctor but given no diagnosis and one third had decided for themselves.  Of this group, almost half of them had a diverse gender identity, including cross dresser, polygender and genderfluid. 

This survey was not shared with any patient groups or healthcare professionals working within this field – and in the UK it was only shared with the groups below:

Birmingham LGBT	UKPON
Intersex UK	LGBT Consortium
Kaleidoscope Trust	PinkNews
Galop	G3 magazine
Mosaic	Rainbow Project
LGBT History Month	Scottish Trans Alliance
The Proud Trust	Fyne Times
LGBT Youth Scotland	The F Word
LGBTI Solidarity for Peoples of Turkey	Diva Magazine
Stonewall	EDF – Equality and Diversity Forum
Stonewall Scotland	Gay Star News
One Body One faith	Lancashire LGBT
UK Black Pride	TMSA UK
Imaan	LGBT Foundation
UK Lesbian and Gay Immigration Group	LGBT Youth Scotland
National LGBT Police Network	myGwork LGBT+ Business Community
Scottish LGBTI Police Association	Lesbians and Gays Support the Migrants
Mermaids	Equality Network
Gendered Intelligence	Bicon – conference about bisexuality
Switchboard	Student Pride
GIRES	Mind Out
Press For Change

And was not shared with dsdfamilies, Living with CAH, Turner Syndrome Support Group, Klinefelter’s Syndrome Association UK, MRKH UK Support – or any other UK patient support or advocacy groups or their European equivalents – or any healthcare teams.  Although it is also vital to research the needs of gender diverse populations, this should not be at the expense of people with DSD. 

Representatives from dsdfamilies met with the Cabinet Intersex Expert for the EU Commissioner for Equality, to discuss the exclusion of patient and family groups who used DSD terminology, from the research. We expressed our concern about the research not being representative of the needs of the people they claim to support and yet still being used to direct policy. For example, focusing on legal gender recognition above the need for good medical & psychological care – our concerns were dismissed as transphobia. 

The above Intersex Expert had also produced this paper in 2015 https://book.coe.int/en/commissioner-for-human-rights/6683-pdf-human-rights-and-intersex-people.html that highlighted legal gender recognition as a priority issue for intersex people.  There was little recognition of medical needs and the only reference to psychological care, seemed to conflate this with conversion therapy.  This paper was criticised by people living with variations of sex development as well as experts working in this area https://www.europeanurology.com/article/S0302-2838(16)30179-8/fulltext but little seems to have changed – and similar self-selecting surveys are currently being used in many other areas.

This includes the LGBT report produced by the UK Government in 2017, that also relied on an online survey that asked people from LGBT groups to self-identify as intersex.  This resulted in a response of 2000 people identifying as intersex (2% of respondents) – and the analysis acknowledged that this was likely not to be representative and that people were using the term “intersex” to mean something non-medical, possibly conflating with non-binary identities.   https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/721704/LGBT-survey-research-report.pdf

In contrast, when a dedicated Call for Evidence, open to all people with intersex/DSD and designed to ensure that responses were included from people with a diagnosed DSD, along with their families and professionals working with them, there were only around 300 responses – and the analysis of this information has still not been published. 

The LGBT Survey led to a request by the Women and Equalities committee, ministers and some individuals and organisations, to find a way for people to use the Census to state that they were intersex.  Following discussions with stakeholder and likely due to the Call for Evidence on ‘Intersex/DSD/VCS’ by the same Government Equality Office from 2019 only receiving 300-350 responses, the Sexual Orientation and Gender Identity department of ONS, supported by the National Statistician’s Data Ethics Advisory Committee, recommended against referencing ‘intersex’ in the Guidance of the Census.

Following our discussions with ONS we believe that this decision was made as there is no definition that allows a clear understanding of what/who is being measured, there is ‘no strong data user need’ and mixed views about ‘respondents need’, and a very clear understanding that data gathered will not be reliable and will not have any usability/value in terms of informing policy.  At dsdfamilies, we are keen for ONS to go further and to commit to find other routes of gathering data around variations of sex development through the health department of ONS. This remains under discussion.

Currently, the Intersex Mapping Study in Ireland https://www.dcu.ie/intersex is also using a study design based on an online survey that asks people to self-identify as intersex.  This is also likely to produce inaccurate and unreliable results – as the most important first step when designing any research project, is to accurately define the population you want to study.  This is rarely done by academics working on intersex issues, which raises the concern that the work they produce, is misleading and does not represent the people most in need of support.   

Choice of terminology

Academics from the social sciences, overwhelmingly use the term intersex, even though it has the potential to exclude many people born with variations of sex development, who only use DSD or condition specific language.  The choice of language is often justified by the preference of activists – although sometimes misleading statistics are also used.    

From the recent special edition “Intersex: Cultural and Social Perspectives” https://www.tandfonline.com/doi/full/10.1080/13691058.2021.1899529 there was no mention of condition specific terms and their choice of terminology was decided as below:

“In the nascent field of interdisciplinary intersex studies, terminology, and consequently definitions, have raised a number of difficulties. Whilst most activists and scholars prefer the term ‘intersex’, others, particularly medical professionals and those working in close partnership with them, have preferred the term ‘disorders of sex development’ (DSD – coined in 2006) or ‘differences of sex development (dsd)’.1 In 2015, Malta gave legal protection on the basis of ‘sex characteristics’, building traction for the use of the terminology ‘variations of sex characteristics’ (VSC) in legal and human rights discussion. However, it is worth reflecting on the fact that in her work in the UK and Sweden, Lundberg found that only a minority of young people with variations of sex characteristics had heard of the term ‘intersex’ (Lundberg, Hegarty and Roen 2018). Due to the pathologising connotations of the term DSD both for intersex people (Davis 2015) and for lay audiences (Hegarty et al. 2020), and the potential for VSC to be understood as both innate and acquired, this editorial will use the more common term intersex”

However, from looking at the references they provided to make this decision. 

1. Lundberg – although only a minority of young people with variations of sex development had heard of the term ‘intersex’ – the above authors left out that only 10% of young people either liked the term or thought that they could use it.  https://www.tandfonline.com/doi/full/10.1080/19419899.2018.1453862
2. Davis – although a good overview of the opinions of intersex activists –the views on terminology seem to be mainly based on the authors preference.  https://nyupress.org/9781479887040/contesting-intersex/
3. Hegarty – in contrast to what is written above, the paper found that DSD was considered less stigmatising than intersex. https://psycnet.apa.org/record/2020-57692-001

Intersex surgeries

Currently, the main issue discussed by intersex activists and academics, is the banning of early genital surgery.  However, this has not been accompanied by a call for expert psychosocial services to offer family and peer support.  Surgical interventions are also frequently discussed in the most crass and inaccurate ways, which has led to an increasingly simplistic and potentially stigmatising understanding of the complex issues involved, as highlighted by the recent comments by Eric Weinstein, that stated:

“intersex babies unfairly subjected to white coated physicians playing god with random irreversible sex changing surgeries without a scientific basis”.

A similar narrative is frequently presented in intersex academia – giving the lay person the impression that up to 1.7% of the population have their gender forcibly assigned by surgery and that doctors randomly assign a sex and that this is frequently wrong.  This narrative possibly goes back to GIRES and their attempts to speak for the AIS support group in the UK http://web.archive.org/web/20170117130415/http://www.aissg.org/15_ANNOUNCE.HTM#14%20May%202000 – and their wish for the AIS support group to be involved with a documentary that was possibly going to use genital surgeries to address wider issues of ‘gender identity’.  At this time, the AIS support group advised that they were against unnecessary surgeries on ethical, social and philosophical grounds, but that they didn’t have the experience as most of their members did not have genital surgery and that their priority issues were concerned with issues of truth disclosure, lack of emotional support, childhood gonadectomy without informed consent, osteoporosis, poor treatments for vaginal hypoplasia.  However, these issues are now rarely discussed by academics or activists, who instead only talk about genital surgery – and often as a way to centre gender identities and gender recognition, even using inaccurate statistics to promote this narrative. 

In the 2015 paper referenced above https://book.coe.int/en/commissioner-for-human-rights/6683-pdf-human-rights-and-intersex-people.html the author states:

“In the case of intersex people, estimates of assigning the wrong sex to them vary between 8.5% and 40%. These children end up rejecting the sex they were assigned at birth demonstrating the major infringements of their psychological integrity”.

To back up this statement, the paper https://www.nature.com/articles/nrurol.2012.182 is referenced.  However, the results from this paper say something very different. 

Firstly, the children in this study were not rejecting the sex they were assigned a birth and the study was only looking at whether they experienced any degree of gender dysphoria.  Dysphoria may be understandable in the context of young people with atypical sex and reproductive development, especially if their body develops in unexpected ways during puberty – and should not be used to suggest a rejection of the sex they were assigned at birth. 

Secondly, the study was a review of the literature and looked at 18 studies.  8 studies found no gender dysphoria present – and of the remaining studies, the range of dysphoria was between 8 and 20%, as the authors dismissed the one study that indicated a rate of 38%, as this included mainly patients with severe conditions such as cloacal exstrophy and penile agenesis, where significant confusion or distress about their body could be expected, regardless of sex of rearing. 

More recent research has indicated a figure closer to 5%, although only 1% had changed sex after puberty.  https://www.dsd-life.eu/fileadmin/websites/dsd-life/images/Flyer/Gender_dysphoria_and_gender_change_Final.pdf

Erasing CAH and Hypospadias

It is also rarely acknowledged, that when people are talking about intersex surgeries, they are overwhelmingly referring to surgery for hypospadias https://www.hypospadiasuk.co.uk/ and CAH https://www.livingwithcah.com/about/

For both CAH and hypospadias, there are good evidence-based reasons for taking a watch and wait approach, until a young person can decide for themselves, if there is no medical need – and at dsdfamilies we support many parents who have made the decision to raise their child without surgery.  However, by using the term ‘intersex surgeries’, there is little attempt to engage with patient groups for either CAH or hypospadias, who rarely use and frequently reject this terminology.  Describing these surgeries as ‘intersex surgeries’ has also allowed hospitals to announce they are stopping intersex surgeries, whilst claiming that hypospadias and CAH have nothing to do with intersex. 

Malta is frequently described as the country that has banned intersex surgeries.  However, due to the small size of the country, they only banned surgeries that they didn’t perform and excluded hypospadias, resulting in no change to their practice. 

This highlights the importance of precise language and clearly defining your population, if you want policy change to be anything more than words. 

Why does this matter?

This all comes back to needs – and the needs of the 0.05% being misrepresented or even erased. The most complex and rare cases from the 0.02% are presented as if applicable to the 1.7% or even 4% – but then the lowest need cases from the 4% are presented as if applying to the 0.02%. 

For example, in the 2020 paper by Fae Garland and Mitch Travis https://onlinelibrary.wiley.com/doi/10.1111/jols.12223 intersex variations are described as “predominantly benign”.  This was also voiced at a talk given by David Griffiths for the Wellcome Trust https://wellcomecollection.org/events/YJPWAhEAACIA7VJE – and  highlights the lack of recognition or understanding of the needs of people living with variations of sex development. 

As someone born with Complete Androgen Insensitivity Syndrome, there is nothing benign about finding out as a young teen that you were born without a uterus, cervix and upper third of the vagina – and the impact this has on fertility, sexual function and psychological wellbeing.  This should be no barrier to a great life – but it is never ‘benign’.  I would also ask whether the episodes of life-threatening adrenal crisis associated with CAH are also considered benign – or the heart problems associated with Turner Syndrome?  Even infertility is recognised as a disease by the American Medical Association https://www.the-scientist.com/editorial/a-new-view-of-my-own-past-69024 and the grief associated with infertility is well documented. 

Presenting intersex as just benign variations, erases the very real medical and psychological needs that should be at the heart of any activism, policy, or research.  It also does not allow young people the space to grieve the losses frequently associated with being born with a different body, which is essential if people are to accept their bodies and make a meaningful life.  This very much feels like a form of ‘toxic positivity’ – and gives the impression that a bit of flag waving and visibility is all that we need.  Being proud of your differences and celebrating diversity can be empowering and hugely rewarding, however, this should be alongside ensuring that medical and psychological needs are also met.  Maybe the “benign variation” description is especially loved by policy makers, as it is far cheaper to provide a few flags or to add an I to the end of LGBTQ+, than providing the funding for family, psychological and peer support.  Even when the I is added, funding received is limited and less than 1% of overall funding for LGBTI issues. https://lgbtfunders.org/wp-content/uploads/2018/04/2015-2016_Global_Resources_Report.pdf  

Increased stigma

Treatment options are also frequently described in the most stigmatising ways, for example in the article linked above by Fae Garland and Mitch Travis, they describe vaginal dilation as “the stretching of the vaginal canal to accommodate a ‘normal’ penis, during childhood either by parents, carers of healthcare professionals”.  A similar definition was used in the Intersex Mapping Project Survey, which described dilation as “being made to insert objects into your vagina or front whole” – and a presentation by Celeste Orr during the 2021 Intersex Conference, A Vision for the Future, even presented the idea that mothers were usually the ones to force their children to dilate and were involved in ritualistic and institutionalised sexual abuse of their children. 

This is so far removed from anything that is currently happening in the UK and only adds to the stigma associated with being born with a variation of sex development.  Describing the worst examples of care and presenting them as happening now, could also significantly impact on the relationship between young people and their healthcare providers. 

Many young people with Androgen Insensitivity Syndrome or MRKH, choose to use dilators – and they frequently need significant care, support and sensitivity – and discussing treatment options in this way shows a lack of empathy and understanding, especially when the above talk seems to also suggest that a young person wanting to have a vagina or to have sex with her boyfriend, is all part of a “harmful status quo belief of the medical establishment”.  It feels like the very real loss of the young people at the heart of this discussion, are considered as too ‘cis-heteronormative’ to count, especially as it is rare to see similar criticism of dilators when used as part of sex affirming surgeries for trans young people. 

Increased risk of surgical interventions

There is also the risk that referring to babies as intersex, especially with the common misunderstanding that this means neither male or female, a third sex or even having both sets of genitals, could result in parents consenting to surgical intervention that may not be needed.  This was highlighted in the paper by Annette Smith & Peter Hegarty https://www.tandfonline.com/doi/abs/10.1080/13691058.2020.1788164?journalCode=tchs20 that found that people were more likely to justify clitorectomies, if a baby was described as intersex as compared to describing as female. 

This was also discussed by Alice Dreger on her website:

“I learned that, for some of these folks, using the term “disorder of sex development” meant in their minds that you could afford to do less medical intervention on affected children. “Intersex” had a way of feeling totalizing, because it had come to represent an identity (thanks to the intersex rights movement). The people who were uncomfortable with intersex wanted to make it go away in children—they didn’t want their defenceless babies being drafted into a political identity movement. If their children just had a DSD, well, then they just had something that went funny in development, but it didn’t mean their whole bodies and identities were taken over by this thing. It was manageable; they could manage with less medical intervention” http://alicedreger.com/dsd

Loss of privacy

Regardless of how frequently the 1.7% statistic is used, there are only a tiny number of children (far less than the 0.02%) that present at birth with genital difference of a degree that would make sex assignment difficult without further investigations.  However, is it fair to label such a tiny number of children as intersex, even if this is only on a social and not a legal basis, as this would result in a significant loss of privacy about their body and medical history.  Many parents have to make the difficult balance between ensuring their child understands that nothing about their body is a secret, whilst also respecting that their child has the right to privacy about personal information.  Far better for a child to be raised as a boy or girl with a different body, whilst providing the support they need to feel confident about their difference – and whilst keeping an open mind that they may identify in a different way as an adult, and that is also fine.

Funding

The misrepresentation of people born with variations of sex development, has led to significant public confusion, with many people believing that intersex is an identity, possibly a gender identity. 

This likely has an impact on funding, which is clearly demonstrated by the difference in funding given to groups that support gender diverse identities, as compared to funding received by groups who support children and young people born with variations of sex development. 

Intersex research based on online surveys that ask people to self-identify as intersex, have also been used to justify giving funding for intersex projects, to groups such as Scottish Equality Network, who have little experience in this area – and have still not produced any project or service that could improve the lives and wellbeing of people with DSD.  This is highlighted in the Freedom of Information request detailed below:

Finding accurate information about your body and health needs

One of the most important aspects of the care and support of people born with variations of sex development, is finding accurate and precise information about your body.  This allows you to make informed choices about any healthcare options that are offered – and it also helps you to meet other people who share a similar experience.  Sadly, intersex terminology now seems to be doing more harm than good.  Many young people and even new parents use social media to find sources of information and to develop relationships with other people with similar experiences or medical histories.  However, when searching for #intersex on Instagram, there is very little in the way of accurate information and even activist and support groups rarely discuss the condition specific names that are most frequently known and used. 

Currently, the top 100 posts for #intersex are as below:

Someone waving a pride flag	Gender creative parenting
Anime trans account talking about finding blue and pink confusing	Bisexual Olympic athlete – assault
Alok Vaid-Menon (non-binary)	Trans memes
Kinky fairy picture	Trans poster
Genderqueer & ceramics with pictures of mild hypospadias	Pride wine glass
Queer sexuality	Queer shop merch
Gay culture	Something about baby yoda being a LGBT icon
LGBT	Trans person being adopted by dad of her BFF
Man in bondage gear waving pride flag	Trans
Drag night	Queer shopping
Pride week in Prague	LGBT
Guardian article about non-binary warrior	Caster Semenya being used to claim no scientific distinction between men and women
LGBT group and article about pope saying god made gay people	Queer community vocab
Someone coming out as intersex and asking to be called hermaphrodite (no diagnosis given)	Kings Lynn Pride
Queer-owned inclusive book box	Trans meme about misgendering
Munroe Bergdorf and 20 thing not to do this year – one of these was don’t erase intersex	LGBT and Romeo and Juliet being gay
LGBT	Trans artist drawing picture of hairy creature with caption “Intersex people shouldn’t feel forced to alter their souls”
LGBT	Post by CEO of cuddlemonstr
Queer t-shirt shops	Someone dancing in pants with hashtags including crossdresser sissy and pantyfetish
Long Beach Trans Pride	Shop queer gear
Queer spaces	Ella festival for queer and non-binary people
Celebrities with tans children	Shop queer gear
EndIntersexSurgery	Seeing Mike Pence swear in a democrat senator while a bisexual woman in a purple wig and zebra print coat holds the bible
Pride hearts knitting	Stop sexualising women and girls for literally just existing
Intersex person	Rainbow crafts
LGBT	LGBTgroup and something about an art teacher being gay
Gender identity and sexualities – pansexual, non-binary	Rainbow family and gay marriage
Folx Sexual Healthcare	The smell of bisexuality in a candle
Queer spaces	Being Asexual
Trans	Rainbow crate book box and Cinderella is dead book
LGBT	Transgender actress joining charmed
Genderless and dissociation	Trans post from tinder
How to be a better trans ally	LGBTQ artwork
Trans and non-binary health and hormones	Queer garden gnomes
Rainbow craft box	Trans parents
Mercy bell cat t-shirt	Gay kissing meme
Trans woman with kids	Trans anime meme
Story about an intersex twin forced to live as a boy and is really a girl inside	How to come out as asexual to friends
Gender elephant	Wearing binders
Cencus	Intersex jusitice is trans justice meme
Possible intersex person	Trans poster
Glitter beards	Gay meme
joke about asexuals	Demi-sexuality
Transcending the binary	LGBT
Queerness and letter to cis-heterosexual parents	Cologne Pride
Trans anime account posting about Caster Semenya also with hashtag trans	Trans memes about on-binary
LGBTQIA+ asexual	Intersexuales Chile
LGBT memes	LGBT memes
Anti trans sports ban	Asking for pronouns
Drag show pride ball	Using emojis for pronouns

Panty fetish man aside (my eyes my eyes) there is possibly a lot of great content in the above posts, however, none of this provides any accurate information that would support young people to find out about their bodily difference or even to develop peer relationships with other young people with a similar diagnosis. 

Becoming a meme

When intersex is mentioned on social media, the information is frequently inaccurate and the different bodies of children and young people are described as being ‘neither male or female’ or as third, fourth, fifth or even sixth sexes – and frequent memes are produced that use our bodies, as a way to validate diverse gender identities.  Whilst mis-gendering is considered profoundly offensive, the same respect is not given to people with DSD.  Even worse, the term has become associated with types of porn and ‘Not Safe For Work (NSFW)’ #intersex posts are becoming increasingly common.  This possibly stems from the misunderstanding that intersex means both sets of genitals – and even academics like Anne Fausto-Sterling have subtly presented this narrative, as indicated in the quote below about intersex children (from her book ‘Sexing the Body: Gender Politics and the Construction of Sexuality’):

“It is not so far-fetched to think that some [intersex] can become the most desirable of all possible mates, able to pleasure their partners in a variety of ways.”

Lack of cultural sensitivity

Children with variations of sex development can be born in all geographical areas and to parents from all social, cultural, ethnic, and economic backgrounds – and this includes to socially conservative and religious families.  To ensure that as many children as possible get the support they need to grow up feeling positive about their bodies, language and support groups need to be inclusive of diverse communities.  Only using intersex terminology and placing the complex issues faced by children with atypical reproductive development, alongside adult sexualities is not always the best way to engage parents of young children. Labelling babies with what some people consider to be a queer or political identity, or even describing intersex as ‘queer bodied’ https://en.wikipedia.org/wiki/Intersex_and_LGBT may confuse and even alienate many parents, preventing children getting vital support.  This was discussed by Alice Dreger in the chapter “Twenty Years of Working Towards Intersex Rights”

Misinformation within schools

Presenting intersex as an identity term, is also increasingly being introduced into schools, with little consideration that a child or young person living with a variation of sex development, may not like, use or even know the term applies to them.  From discussions with psychologists working in this area, they have stories of young people developing anxiety and depression after realising that the term intersex was being used to describe them – and psychologists will always follow the lead of the young person and will not force language on them, that prevents them from being able to discuss their variation or to share information with friends.  A recent example of this was highlighted in the school information provided by Shout Out Ireland https://www.shoutout.ie/blog/attitudes-of-secondary-school-students-in-ireland-towards-intersex-issues who presented ‘intersex’ alongside identities including queer, pansexual and non-binary – with little reference to the very different issues faced by young people.

 

Misinformation within institutions

Inaccurate information is now frequently shared within organisations, often as part of their Equality and Diversity Training.  This has even led to a woman in the UK with Partial Androgen Insensitivity Syndrome, being threatened with disciplinary action at work, after she criticised the information that was shared about intersex – and was left in a difficult position about whether she would need to discuss her medical history. 

Even in the NHS, inaccurate information about ‘intersex’ is shared https://www.northdownshospital.co.uk/-/media/files/microsite/northdowns/january-2020–ima-willo—slide-pack-25–half-day-lgbtq-awareness-training–jamie-willo.pdf?la=en&hash=1401109BB6054E1A9A086D90693F1C7064FD8D28 including a video that describes intersex as a gender where people have both male and female parts and usually XXY chromosomes.  Gender and Sexuality Animation – YouTube

Failure to prioritise the needs of the most marginalised and vulnerable

In DSD/intersex advocacy, the most vulnerable and marginalised are always going to include babies and children, who have no voice and cannot advocate for themselves.  It is essential that parent advocacy should be prioritised if the next generation of children are to grow up and feel confident about their bodily differences. 

If intersex terminology is not embraced by the majority of parents, how can any advocacy or activist organisation truly define themselves as inclusive of the needs of all children born with variations of sex development.  If receiving peer support depends on parents describing their child as intersex, how inclusive is the support offered?

Hopes for the future. 

I want to see a future where ALL children, young people, and adults with variations of sex development, have the family, psychological and peer support they need to live full and meaningful lives.  Being born with a different body should not be a barrier to a great life, but support is needed – and this support should not depend on how you choose to identify.  We need to recognise that most people use condition specific terms – and that many reject the term intersex and see themselves as someone with a medical condition – and do not feel stigmatised by having a medical condition as this makes them like everyone else in the world. 

We need to ensure that the names of our medical conditions are frequently referenced on websites or social media, by any groups working in this area, to ensure that young people and their families can find accurate information about their body and meet others with similar experiences.  We need to include language options that allow people to easily share information with their friends and family, at their pace. We need to reclaim the names of our medical conditions #ReclaimOurNames if we are to understand our bodies and make informed choices about our healthcare.

Advocacy, activism and research should try to engage with as many people as possible – to ensure that a diverse range of voices are heard and that people are provided with the support they need, regardless of the terminology they use to describe their body.  Possibly the best option is to have support groups with a neutral name, whilst accepting that members may have different thoughts and feelings and may use different terms at different times – and that this it is OK for our opinions to be as diverse as our bodies. Hopefully the future will be more inclusive than adding an I, which far too frequently results in the needs of people with variations of sex development becoming invisible

And for one final thought, maybe the IAD from Intersex Awareness Day, could also stand for Inclusive of ALL people with Different sex development.  Maybe not as catchy, but definitely more inclusive.