Why do I use ‘Intersex’ and not ‘DSD’?
The short answer is that ‘intersex’ is an accurate, non-technical and non-pathologising description of those of us who are biologically different from contemporary cultural stereotypes of ‘male’ and ‘female’.
What I’ve written here isn’t a statement on behalf of any official body or agency. It is a clarification of my personal stance on terminology, followed by descriptions and analysis of some contested terms and my impressions on why some groups prefer different terms.
One thing I wish to make extremely clear, is that I extend solidarity to all people personally involved with and affected by this topic and respect their wishes to identify with whatever terms they feel comfortable with.
Who am I?
I’m Meryl and I was born with a condition called 5α-reductase 2 deficiency (pronounced five alpha and 5αR2D or 5ard for short). You don’t really need to know the specifics of how it works or what it does, but what it means for me is that when I was born, I had no externally visible genitalia and it was apparently a challenge to determine my sex without invasive procedures.
The doctors and nurses eventually decided to assigned me as male and I was luckily spared any medical intervention. Eventually I grew more prominent genitalia (my mum says my body shape was still quite ambiguous until the age of about 5 or 6), but I had a lot of shame about my body growing up, and I never really knew why, since nobody ever explained my condition to me. I only actually properly found out a few years ago.
What my condition means for me currently is that my genitals are slightly differently shaped than a typical male (no, I’m not going to describe my dick in detail for you, at least not for free) and I’m infertile. The infertility doesn’t really bother me at all, since I’m attracted to men and have been all my life, and have never had any interest in having or raising children.
Why intersex?
I believe that ‘intersex’ is a casual and recognisable term that clearly, describes people who’s body or bodily functions differ from contemporary cultural stereotypes of ‘male’ and ‘female’. It’s a term with international recognition and is in widespread use by many campaigning and activist bodies campaigning for intersex justice such as:
Organisation Intersex International: http://oiiinternational.com
OII Europe: http://oiieurope.org
Intersex Initiative: http://intersexinitiative.org
InterACT: https://interactadvocates.org/
Intersex Human Rights Australia: http://ihra.org.au
The term ‘intersex’ doesn’t come totally free of misconceptions or other cultural baggage, but in my opinion it’s useful as a casual, colloquial and international term that carries less stigma and pathologisation in most people’s minds.
So, why don’t I use DSD? The origin of the term ‘DSD’ is ‘disorders of sexual development’ and I don’t think I need to explain how unnecessarily pathologising that term is. The shape of my body isn’t a ‘disorder’ and I reject terminology that casts me as broken, damaged or deviant. Recently it’s been re-branded to ‘differences of sexual development’ but in my view this is simply a nonsense phrase. If sex as a concept has any meaning at all, it’s that there are ‘different’ types of sexual development. The primary thing that the terms ‘male’ and ‘female’ might describe (in the context of biology) is two different types/pathways of sexual development, and so calling something a ‘difference of sexual development’ doesn’t actually describe intersex conditions specifically. The more recent rebranding as ‘variations of sexual development’ (VSD) is slightly better but still a bit awkward for the same reasons in my opinion.
Further, the term DSD is mostly used in a medical context — a setting where intersex conditions are mostly commonly regarded as problems or issues to be managed rather than natural variations in human development. I know that medical terminology is slow to change (and often resistant to it!) but I see no reason as to why the medical community should be referred to as an authority on how individuals are allowed or expected to talk about their own bodies.
I’m well aware of disagreements over these terms, and before somebody tries to simply dismiss me or argue that I’m an ideologue, I want to point out that I think there are good arguments for the use of DSD as a term!! In particular, I’m sympathetic to the reasoning in Emi Koyama’s essay on the terms for Intersex Initiative and think that’s good foundation for debate around the terms that doesn’t cast them as an either-or choice we have to make and then never think about or discuss.
However, the majority of people I see attacking ‘intersex’ and promoting ‘DSD’ aren’t making the same arguments as Koyama. Koyama notes that ‘intersex’ as a term still has some utility and respects people’s rights to identify the way they choose. Whereas, the majority of people I’ve seen promoting DSD appear to have a lot of overlap or sympathy with the anti-trans ‘gender critical’ (GC) movement, if not openly identifying as ‘gender critical’ themselves.
Many of these people claim to be offended or outraged by the term ‘intersex’, claiming it’s offensive, harmful or outdated. Personally, I’m yet to hear a clear explanation or robust articulation of any way in which ‘intersex’ is an offensive or harmful term to use in non-technical, non-medical settings. I’ve only really been met with insistence that it is, coupled with repetitive assertions that sex is a binary, effectively erasing or denying the existence and experiences of people like me, who have bodies that challenge or complicate rigid sexual classification.
I’m given to believe that the real reason these people don’t like the term ‘intersex’ is because it contradicts a binary model of sex by implying that there’s a spectrum of sexual expression and that some people are intermediate between the two, since the sex binary is a core dogma of GC and broader anti-transgender ideology.
Both the GC and wider anti-transgender movement used to assert that, since intersex people are such a ‘rare’ occurrence, we’re not worth considering in discussions about how sex and gender are defined (despite being obvious stakeholders in that discussion). This has now evolved into fully denying that intersex people even really exist. They assert that we are all either male or female and simply have deformities, mutations or disorders that can be detected and analysed to sort us easily into 1 of 2 sex categories, which is merely a denial of the lived experiences and wishes of many intersex people.
And that’s really all there is to it in my view. Almost every single person I’ve encountered online arguing against intersex and for DSD has presented to me as extremely hostile to transgender topics and refuses to respect or even acknowledge anybody’s right to choose what labels and terms they use to describe themselves. Personally, I’m happy to use whatever labels people deem appropriate for themselves, but I have to make a note of how one-sided that respect often appears to be; why are my language choices not afforded the same respect?
I also want to point out that, for the simple act of criticising or disagreeing with gender critical ideologues, I’ve been targeted for harassment, and my opinions on intersex issues are no exception to that. The only difference is that, whenever I dare to disagree with GC dogma on intersex topics, I get asked invasive questions about what condition I have and told that I have to describe or name my condition or else be branded a ‘liar’ or a ‘faker’. I shouldn’t need to describe how damaging that attitude is to the rights and dignity of intersex people, effectively trying to silence us unless we volunteer information about our bodies that we have every right to keep private.
Data
Lastly, a claim I see a lot is that I want to debunk is:
“actually, nobody likes the term intersex, they prefer DSD”
or
“if you actually spoke to somebody with DSD you’d know they all hate the term intersex”
I want to expose what an outright lie this is. As far as I can tell there is no clear consensus in the intersex community on what term is preferred, and anybody claiming otherwise is trying to appeal to a majority that they just straight up invented. There are international campaign groups that use both terms, but as for intersex individuals ourselves, I haven’t seen any conclusive evidence that demonstrates any clear or significant preference for either.
This study of language around intersex and DSD found that not a single one of the young intersex people in their sample preferred the term ‘DSD’, and that the non-intersex focus groups who were interviewed had a far more positive impression of the term ‘intersex’ than ‘DSD’.
This Australian report on intersex issues shows a poll of preferred terms that people with intersex conditions used to describe themselves. 48% responded ‘intersex’, 20% responsed ‘intersex variation’, 18% ‘intersex condition’, 7% said ‘difference of sex development’, and only 3% said they use ‘disorder of sex development’.
And finally this study examining the attitudes of people with DSDs to different terms showed that 31% felt negatively about the term DSD, 24% neutral and 45% positive. The term DSD is clearly not totally rejected, but it’s dishonest to suggest it’s uncontroversial or even preferred by a significant majority given these results.
Again, I want to state; there is no clear consensus on what term is preferred by the intersex community as a whole, and while I personally use intersex for the reasons outlined above, I think it’s respectful to acknowledge and use the terms that people use for themselves. Yes this makes it difficult to refer to the whole population when there is no agreed upon collective term (and some GC insistence that the intersex community doesn’t even exist as a community at all), but I would expect everybody to be mature enough to acknowledge and compassionately navigate that issue in discussion, centering and listening to the voices of intersex people on the topic, rather than shouting down anybody who thinks differently.
Conclusion
- I personally oppose any terminology that pathologises people born with intersex traits or imposes unwanted value judgements on those traits themselves.
- I have personally committed to avoiding direct use of “disorder of sex development” in my discussions, as I view it to be unnecessarily pathologising.
- On occasion, I use “differences of sexual development” or “variations of sexual development” when somebody expresses a preference for that terms or when it seems necessary and appropriate for communication.
- I believe that people born with intersex traits have a right to autonomy in using whatever term, or terms, they prefer when speaking about their own bodies and experiences. It is not my position, nor my wish to prohibit others from using terms that they feel comfortable with.
For more in-depth resources, including legal toolkits and resources for allies and parents, the Organisation Intersex International, and in particular the European branch, OII Europe, have many resources including published articles, policies and guidelines to the needs of intersex people and effective implementations of those policies and practices. InterACT have a list of Intersex organisations based around the world if you want to find out more about intersex issues and campaigning in your country or region.
