Inclusion is a wonderful thing – and we should all want a world where inclusion is valued, and everybody can be part of public life and free to live without stigma. However, inclusion should not involve erasing or misrepresenting the needs of marginalised groups of people, tokenising their existence, without trying to understand their needs – especially when their needs are diverse and complex and not easily boiled down to a single letter.
The I does not stand for Invisible!
So, I would ask all organisations adding the I, do you really understand what this stands for and are you really trying to improve the lives of people living with variations of sex development? Or are you just adding the I because you think this is the best way to look “inclusive”, whilst ignoring their actual needs?
The I also does not stand for Ignoring needs!
I have written in detail about the term intersex https://differently-normal.com/2021/10/25/the-invention-of-intersex/?preview_id=292&preview_nonce=9f62da2a5a&preview=true and probably the first thing to note, is that the majority of people who are living with differences of sex development, do not identify as intersex, may not know the term is used to describe their medical history and may even find the term difficult or even stigmatising. It is also increasingly common for people without a DSD, to identify as intersex, with even Polycystic Ovarian Syndrome being claimed as the most common intersex variation, even though most women with PCOS would never describe themselves as intersex and this is not officially recognised by any medical organisation.
So, when adding the I, who are you representing?
1) People without a DSD who choose to identify as intersex – or
2) those with a DSD, who may not use or even like the term?
By adding the I, are you erasing the needs of the most vulnerable, including newly diagnosed children and instead prioritising the needs of people who see “intersex” as an identity, for ever more spurious reasons?
So, let’s think about needs?
Surely any genuinely inclusive organisation would want to consider the needs of the most vulnerable as a priority – and when this comes to the I, surely this would prioritise the 0.2% living with complex differences of sex development. Some of these conditions are listed below:
Mixed Gonadal Dysgenesis (Mosacism)
Complete Gonadal Dysgenesis
Partial Gonadal Dysgenesis
5-alpha reductase deficiency
Complete Androgen Insensitivity Syndrome
Partial Androgen Insensitivity Syndrome
Persistent Mullerian Duct Syndrome
Congenital Adrenal Hyperplasia
Mayer-Rokitansky-Kuster Hauser (MRKH) syndrome
If your organisation does not know the names and does not understand the needs of people living with these complex conditions, are you in any way able to advocate for them?
Did you know that Turner syndrome can be associated with significant heart and kidney problems – or that Klinefelter’s can increase the risk of developing Type 2 diabetes or osteoporosis?
Does your organisation understand that girls with MRKH or Complete Androgen Insensitivity Syndrome, may find out as young teens that they were born without a uterus and with a short vagina and that this can impact on both fertility and sexual function? Can you provide information about options for vaginal hypoplasia, which can include dilators and surgery? Can you provide the psychological support needed to come to terms with this information? Are you aware that she may find her bodily difference being described as “intersex”, incredibly difficult – especially if this is done as part of “inclusivity” training and without understanding anything about her needs?
It may be especially difficult for a young teen, to be faced with their bodily difference being described as neither male or female, as is frequently suggested by lessons using the GenderBread person. Is this genuinely being “inclusive”, or is this using a vulnerable group of people without considering their needs – and without engaging with expert advice as detailed here. https://dsdfamilies.org/application/files/9116/3519/2768/July_2021_schools.pdf
Does your organisation know that every year in the UK, around 150 babies are born with complex genital difference? This can be associated with a number of life threatening and life limiting syndromes and further investigations may be needed to determine the cause and in rare cases, whether best to raise baby as a boy or a girl? Do you offer support to new parents facing these issues, so that they are able to advocate for their children? Are you aware that labelling these babies as neither male or female or a third sex, can increase the risk of unnecessary surgeries? Do you provide funding so that parents are equipped with the skills to raise confident children living with different bodies?
Does your organisation know that one of the most common causes of atypical genitalia, Congenital Adrenal Hyperplasia (CAH), is a medical emergency and associated with the possibility of a life-threatening adrenal crisis? Babies can develop arrhythmias, vomiting and dehydration shortly after birth and will need lifelong medication. What support and information do you offer to these families – and does your organisation understand that the overwhelming majority of people with CAH, reject the term intersex? Does your organisation understand that someone with CAH may be sitting in your “inclusivity” training and may be distressed by how you are describing their bodily difference?
When adding the I, without really understanding the I, are you misrepresenting the needs and bodies of people born with variations of sex developments and adding to public confusion? Are you contributing to these conditions being weaponised and turned into memes that are used to discuss issues around sex and gender, without any genuine interest in needs? Do you consider that there are likely people working in your organisation, who are living with these complex conditions and may find it traumatic to have their medical conditions misrepresented?
Most importantly, when adding the I, are you removing funding opportunities from the most at need – and are you preventing funding being available to meet the needs of those who are living with complex variations of sex development?
If by adding the I, you are genuinely wanting to improve the lives of people born with variations of sex development, we need more than just a hashtag – we need funding and services that prioritise our healthcare and psychological support. If you genuinely want to be inclusive, do not misrepresent or ignore the voices of the people you are claiming to support – and do not add the I without first listening and understanding our needs.
If you are claiming to stand against interphobia and really want to end discrimination, please start by ensuring you don’t make the I invisible by ignoring our needs.
And finally, if you are serious about inclusion and your organisation really believes that we are more than just a hashtag, consider donating to our needs https://dsdfamilies.org/donate