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maria-marsden · 3 years

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“No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed by all the members thereof”. – William James, (1890),The Principles of Psychology.

“I is for Intersex, not Invisible!” – a popular LGBTQIA+ Pride slogan.

I am intersex, but I have not always identified as such. An intersex person is someone who is born with variations in their biological sex characteristics that do not conform to what is biologically or culturally considered typically male or female.

Sex characteristics are genitals, reproductive organs, chromosomes and hormone patterns.

In my case I was born with Mullerian Aplasia (aka MRKH or Mayer Rokitansky Kuster Hauser Syndrome) and unilateral gonadal agenesis. MRKH affects about 1 in 9000 of the world population. Intersex people as a whole number >1.7%. We are more common than autistic people. We are more common than people born with natural red hair.

Like many intersex people, l was born with more than one intersex variation. My uterus was not formed properly, I was born without a cervix and 3/4 of my vagina canal has been absent since birth. I ovulate and have very bad period pains, but have never “started my periods” in the typical understanding of the term.

At birth, I was presumed to be female. I had a vulva that appeared typically female. At puberty, I developed breast tissue, pubic hair ET cetera. However, by the age of 18, l had still not started my periods. I was very thin then and at first, doctors thought this was due to me being underweight.

In 1989, I had a laparoscopy. The female doctor informed me that I was born without a uterus and with a very short vagina [ about 2 centimetres ]. She said that I would never be able to have sex without surgery and also suggested that I might find it very difficult to find a partner who would accept me.

“But there are a few nice men out there,” she said. I was told that I should come back and have surgery when I was about to get married. The surgery would involve cutting skin off my arm and grafting it into a vagina. It’s a lot to take in when you are 18.

I was actually just about turn 18 at the time....traditionally the age of reaching adulthood. I reached a state of something, but I couldn’t articulate what it was. I couldn’t articulate what I was.

Of course, there was a part of me that really wanted to challenge the doctors. I wanted to say things like, “what do you mean I can’t have sex? I can already have orgasms.” I wanted to say, “How do you know that I am heterosexual? I might be a lesbian for all you know.” (I hadn’t answered the question of my sexuality then. This medical trauma always intruded on my attraction to women.) I wanted to shout, “How do you even know that I want to be a female? I might want to have a penis!” [ I didn’t, but l certainly considered this option] I wanted to ask, “but what about anal?” But I didn’t dare. [ I was a shy, withdrawn 18 year old. ]

I did have sex and healthy relationships, including penetrative sex without dilation or surgery. I’m happily married, but for a long time I thought that by having sex without medical treatment, I was doing something wrong. This is one of the perils being diagnosed a malformed female.

Whatever you do misdiagnosed as a malformed female, you're always going to think that you're doing something wrong... that you are wrong or inadequate in some way.

When I tell people that I am intersex, a lot of folk assume that being intersex is a term that medics diagnosed me with. The truth is that since the beginning of gynaecological medicine, doctors and surgeons have hardly ever diagnosed anyone as intersex.

When medics first became interested in what they termed “hermaphroditism” or “people of doubtful sex”, their interest was not in diagnosing intersex, but just the opposite. Medics were then (and still are) only interested in finding intersex patients so that they can diagnose our true sex as female or male and force treatments or surgery that will make us less queer in the minds of those around us. Politically and throughout Western history, this is to maintain white cis heteronormative male privilege.

At the age of nearly 18, I wasn’t diagnosed as being intersex. I was diagnosed as a malformed female who hadn’t formed properly and would never do so without intersex genital mutilation [surgery] or prescribed self harm [ dilation with a glass dildo/test tube].

Medics suggested that as much as possible I keep what little information they have given me about my body to myself. For the most part I did. I spent the next 30 years of my life living in shame and secrecy. This shame and secrecy was compounded when my female friends talked about their periods or sex life. I was different. I didn’t have a language for describing my experiences.

I didn’t have the exact same experiences in terms of rights of passage assumed to be common to all women. I felt included in the category of female, only in as much as I was excluded by a body that didn’t conform and the lack of language for my experiences. I felt invalid as a female and invisible.

I didn’t have intersex genital mutilation. I was almost persuaded to, but I became traumatised by the pre op dilation and the thought of having to continue to do this.

Being diagnosed a malformed female destroyed all sense of my personal and body integrity. The only way that I could keep myself together, was to tear myself apart. I was ending up in A and E every other day with severe self harm. The only way to make myself visible, was to visibly disappear. I became anorexic. I had been starved of the opportunity to grow up knowing other intersex people. I was in my own prison of shame and secrecy and on a hunger strike.

I ended up spending two years as an inpatient in various institutions in the psychiatric system. I was further pathologized and invalidated by the psychiatric system in the UK . In addition to my diagnosis as malformed female, I was diagnosed with borderline personality disorder.

BPD is basically the mark of Cain of the DSM. When a BPD diagnosis is put on a person, whole heap of assumptions are made about that persons personality. These assumptions include, manipulative, attention seeking, passive aggressive, incapable of healthy personal relationships, emotionally immature, unable to grow up, promiscuous, reckless, impulsive ET cetera

Indeed a number of studies and critiques have shown that sexual minorities, trans, non binary and gender non conforming people are more likely to be diagnosed with BPD. Some psychologists and mental health professionals even have the audacity to suggest that what psychiatrists now term “gender dysphoria” is caused by having a borderline personality disorder. One psychiatrist had me fill out a questionnaire to see how much my gender conformed to what is considered typical for women. (To this day, l don’t know why).

I certainly did not come out to psychiatrists as being agender/non binary. I did acknowledge identifying as a lesbian and experienced some psychiatrists trying to tell me otherwise. Despite never having had surgery, one psychiatrist felt it necessary to put in my medical notes that l had a vaginoplasty (even though l had no such thing)! He even asked me if l hung around dark alley ways late at night so that l could get raped. (WTF??????)

Not all the psychiatrists l saw agreed that l had “borderline personality disorder”. The psychiatrist whom l did get along with and who was my main psychiatrist diagnosed PTSD and depression. He said that “borderline personality disorder” was just psychiatric speak for “bugger off and die!”

At that time under the 1983 mental health act in the UK, BPD was deemed “untreatable”. This meant that if a psychiatrist diagnosed a patient with BPD and they committed suicide, the psychiatric team would not legally be held accountable. Indeed, in one hospital a psychiatrist who had insisted that l had BPD said that if l were to leave the hospital and jump off a multi storey car park, he wouldn’t try and stop me!

I did not have a borderline personality disorder. If l was guilty of anything, it was a kind of “trauma re-enactment”. Traumatised by medical violence and psychic mutilation at age 18, I turned to mutilating myself and seeking help from the very same people who had traumatised me in the first place, [the medical system].

Self mutilation led to more psychic mutilation at the hands of the psychiatric system. Now, not only was my body and sex malformed, I was told that my personality was malformed too.

With the help of some good friends who were also psychiatric survivors, I eventually managed to recover and distance myself from the psychiatric profession, challenging their assumptions about me. It took me a long time after that to feel brave enough to reach out and find other intersex people like me.

In 2020 during the first Covid 19 lockdown, I reached out to MRKH groups and found others with the same variations in sex characteristics as myself. I wasn’t alone anymore but I was still a female with missing pieces.

I found the missing pieces in Esther Leidolf’s “The Missing Vagina Monologue and Beyond”, the documentary “InterseXion”and Hida Valoria’s book “The Spectrum of Sex”.

I learned that I wasn’t a female with missing pieces, but an intersex person who had been mistreated, misunderstood and misdiagnosed as a malformed female. I found my community, my anger, my grief and I found myself.

I admit, that when l first learned that MRKH is considered an intersex variation by intersex activists, l had a huge fear of reaching out to those communities. In many ways, l was afraid to become the person that l am today. I was afraid of being someone who could talk just as easily about being intersex as l could about being autistic.

I was also afraid that if l were to come out as intersex, people might make assumptions about my genitals. To be honest, l got so much support from the intersex community that l very quickly realised that other people’s assumptions were not my problem.

It’s much easier now that l am comfortable being intersex to chat with my female friends when they talk about their periods or sex life. As an intersex person, l am not incomplete, invalid or inadequate, l am just different from the majority.

The main benefit of connecting mostly with intersex groups (as opposed to MRKH “syndrome”) groups is that l no longer have to focus on what is supposedly “wrong with me”. I don’t have to see myself as broken. I have had trauma certainly, but I am no longer broken.

I still connect with the MRKH community. As an intersex activist, it’s important that l understand the issues faced by those who identify MRKH as a female variation or condition. I certainly would not have found my way to the intersex community had it not have been for some of my MRKH Sisters and Siblings.

I spent the first thirty years after my laparoscopy, diagnosed as a malformed female, forced into a space where I would be alone with my difference, silenced and invisible and unable to grow.

Finally, having found the intersex community, I feel like I have found an environment to nourish me, to enable me to grow my way and become my myself. I am unlearning and learning continuously about myself. I have some new language and l am beginning to create my own words and terms.

I am nearly 50 now and have come to the conclusion that life is too short not to be myself and l don't give a shit about what other people might think or gossip about me.

I use identity first language. The natural variations in my body and mind are not disorders. I am an autistic intersex person, rather than a person born with autism and an intersex variation. I mean how many people say that they were born with maleness or femaleness?

And just because l describe myself this way l am not saying that being intersex and autistic are the only things about me. Yet to me, they are important things about me because l would much rather have been born with a very fertile mind than a fertile reproductive system.

Many intersex people are autistic or neuro diverse. I feel that l am "inter" in many ways other than just biological sex characteristics. I travel between worlds and have had visitations since childhood from other worlds. The indigenous people of America understood this. Intersex autistic people were seen as the "bridges between worlds" and had important roles in the healing of their communities and as peacemakers. Perhaps this is why l have developmental topographical disorientation. (l can read physical maps well, but get lost in familiar places). I am not broken, just different. Where l lack development in one area, l excel and am evolved in others. Nature does not make mistakes.

XOXY

#Intersex #MRKH #Psychiatric Survivor #Pride 2021 #30 Days of intersex Education #Autism #Neuro diversity #SoundCloud

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