One "minority", prized by the left, erasing another for political purposes while using them for political capital. Typical.
"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...
I am critical of using intersex to describe babies and children, who do not have a choice.
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.
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...
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)...
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.
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...
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...
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...
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...
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 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
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...
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...
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...
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...
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.
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.”...
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”
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...
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"
Ironically, they support trans dilation
