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[Clinical Notes] Identifying as intersex

Dear Angela: 

Thank you very much for your letter. I have divided your letter into two parts and will answer the first part today, about your self-description as an “intersex person  (partial androgen insensitivity syndrome).”  That is because with that description alone, so many other issues come into play.

Forgive me, dear other readers who are what I call quadruple-ly removed from Androgen Disorders. This includes people who 1. Do not have androgen insensitivity disorders (AIS), be it complete (CAIS), partial like Angela’s (PAIS) or mild (MAIS); 2. People who do not know anyone who has AIS; 3. People who do not know anyone who knows anyone with AIS; 4. People who do not study/teach research AIS.  

All those not belonging to any of the four groups above may find this an itty bitty boring, but I have tried to make it less so by explaining scientific terms as simply as I can, and providing links for anyone who may want to read more about the topic. But these realities cannot be ignored – nor can they be trivialized by touchy-feely airhead sentiments such as “If you truly love someone, none of this matters.”

Issue 1, Your self-description. If we take out your age, the first sentence of your letter would read: “Iam an intersex person (with Partial Androgen Insensitivity Syndrome) masquerading as a lesbian to avoid more confusion.” 

You are as much a woman as a cisgender or a trans woman is. Thus, you are not “masquerading” as a lesbian. You are a lesbian who, by its very definition, is a woman who prefers women as lovers. 

Unlike a biological reality like PAIS, the word “Intersex" is a socially constructed category that reflects real (that is, objective and measurable)  biological variation.   

Humans decide (Italics mine). Humans (usually meaning doctors) decide how small a penis has to be, or how unusual a combination of parts has to be, before it counts as intersex. 

Since it is humans who decide, and since the professionals who study this phenomenon cannot even agree among themselves when exactly a person becomes intersex (what do his genitals have to look like before the person who has it can be deemed a woman with a large clitoris, a man with a small penis, or, indeed, intersexed), then you, as a human being have every right to view your atypical genitals and/or chromosomal makeup as male or female (as you have). But with no apologies, no sense of inferiority  which you have yet to achieve.

Issue 2, Intersex vis-à-vis SDS: In truth, many professionals and advocates for people with AIS (androgen insensitivity syndrome – be it complete AIS, partial IAS like yours, or mild AIS) - encourage describing oneself as a “person with DSD (disorders of sex development)” rather than “an intersexed person.” 

It may seem a minor change merely to come across as politically correct, but it is much, much more than that.

Why SDS instead of intersex? 

In the Arch Dis Child. 2006 Jul; 91(7): 554–563, authors of the article “Consensus statement on management of intersex disorders" clearly state that intersex is one of the terms “perceived as potentially pejorative by patients, and can be confusing to practitioners and parents alike.” (Read here)

The term ‘disorders of sex development’ (DSD) however, is clear, denotative and encourages no biased thinking (unless one is the sort person for whom prejudice is the default setting when dealing with minorities be it race, sexual orientation, etc.) All that the term DSD means it that there are congenital conditions resulting in atypical development.

Issue 3, Describing person as "with DSD/an intersex condition” vis-à-vis a DSDed or Intersexed person? To quote clinical psychologist and University of Hong Kong professor Dr Brenda Alegre, “Because her personhood is not only constituted by the intersex condition but she too has gender identity, gender expression and sexual orientation.”   

Issue 4, which to me is far more important than the 3 previous issues: the meaning you attribute to your having PAIS (or better yet, DSD), how you feel having a DSD has affected your life so far and more important than anything else, how you will allow it to continue affecting the rest of your life. 

You are not merely a DSD’d person, you are a person who has goals, plans, earns money, makes choices (both excellent and some not so – more on that later) fell in love, most probably will fall in love again, etc. In other words, you are like me and many others. Some have DSD, some, like myself, have BD (bipolar disorder) and some have other disorders.

Being a minority (you with DSD, me with BD) makes life difficult on so many levels, but hey! That’s the luck of the draw and even more importantly, we have so many other good things going for us. 

One of the many good things going for you was what you said in your letter: “I am a type of person who won't easily put my foot forward maybe because I always put it on my head that I need to conceal my genetic condition.”

This ability to try and think things through rather than merely rushing into things will serve you in good stead, as I will explain in Part 2.  

In the meantime, dearest Angela, hang in there. Hindi tayo nagiisa.

(We are not alone). Plus, part 2 is coming within the week. Promise.  

All the best,

MG Holmes 

P.S. For those who want to know more about DSD, please read this in its entirety. Among other things, it has an excellent explanation of the necessity of accurate terms (inclusive and yet able to differentiate from other categories, no matter how similar they may seem). 

Other links worth reading – but merely as starters, mind you – are the following:  

 

Although both links below consider PAIS as a disease, still they provide some important information:

– Rappler.com