What This Group Has Meant To Me
A disclosure story for Intersex Awareness Day:
by Mary Mihevic
I write this because I stand with my intersex siblings together to say, we exist, we are not tokens, and we will no longer let the medical community violate our basic human rights and mutilate us or lie to us! Here’s why: it is 2017 and we STILL have Intersex Genital Mutilation, IN THIS COUNTRY.
WE HAVE DOCTORS IGNORING THE INFORMED CONSENT OF THE INDIVIDUAL. We have fear and shame based thinking that is taking away self-determination. We have doctors influencing parents to alter babies genitals, to ‘assign’ them a biological sex when there is some visible ambiguity. We also have cancer “risk” being used as a scare tactic, without any real evidence of increased risk.
I AM A WOMAN, I AM A HUMAN, I HAVE AN INTERSEX CONDITION.
When I was diagnosed, my story was told to some of those that I thought were friends that would be there for me and show me love. Yet, my story was taken away from me, twisted, and used to mock me.
I’M TAKING BACK MY STORY BY TELLING IT! IT IS MINE, AND HERE IT IS:
I was born with CAIS, Complete Androgen Insensitivity Syndrome. I was diagnosed at age 17. Until then, I had absolutely no idea that there was anything non-typical about my body. I was born without any visible genital ambiguity. BUT, WHAT IF I HAD BEEN BORN WITH AMBIGUITY?
Just like everyone, when I was a fetus, my body was flooded with hormones responsible for determining the biological sex of a baby. However in my case (which is all I can speak to), I could not respond to my chromosomes. I have a recessive gene that lead to this condition. My body is completely insensitive to, can’t use or process androgens like testosterone.
Okay, no biggie, right? But what was also discovered upon being diagnosed at age 17, because I was late on getting a menstrual cycle, was that I have XY chromosomes. I was supposed to be a boy.
Everyone has the X chromosome, and the genetic human default is female. So apparently, when I couldn’t respond to my own chromosomes, that’s what my body did, defaulted. In my case, with my condition, I defaulted to the typical female outward anatomy. I grew like a typical female, I grew breasts and I’d always had a vagina. It was discovered at 17, that I had no uterus, or Fallopian tubes, but I did have rudimentary gonads internally where my ovaries would be located. Apparently my body was producing testosterone, which again, my body couldn’t use…at all. I was then told that my brain (hypothalamus/pituitary) was chemically altering this to estrogen for me, naturally.
So, at age 17 I was told point blank: “if you don’t have surgery to remove the gonads, you will be dead from cancer by age 24.” Terrified, suicidal, and attempting to make sense of any of this… Of course, I agreed to surgery because, who wanted to be dead at 24? Note: there was no real medical evidence that in my case this was true, it was based in assumption.
After going through medical hell: being poked, prodded, ultrasounds, trans-vaginal ultrasounds, being stripped, being spoken about as if I wasn’t present and having parts of my body being discussed in front of me, being urged to allow residents to come into the room and gawk at me, feeling treated like a guinea pig, and being misinformed or under informed, and possibly being given conflicting information; I had surgery to remove the internal gonads.
I was told it would be a laproscopic procedure. I awoke and found that I was in the worst pain of my life, unable to use my abdominal muscles for weeks, and had undergone much more significant surgery. My abdomen was never the same. Essentially I was gutted like a Cesarean section, as my 18th birthday present. I was simultaneously forced into menopause. I was given synthetic estrogen pills, and experienced hot flashes with form of emotional hell that I don’t wish upon any of you.
Now we have arrived at my point. BIOLOGICAL SEX IS DIFFERENT FROM GENDER. Gender is a social construct and it is coupled with factors that include experience, conditioning, and biology.
For me, I have never questioned my gender. I was born female, I am female, and I’ve never wanted to be, or felt like I should be male. But that is MY experience. With my condition I could not become typically masculine, physically. My body would never virilize through male hormones, since I can’t use them. So I feel fortunate that I’ve never felt like a man trapped.
I’m not trans. I have respect for trans folks…BUT INTERSEX IS NOT TRANS. There are intersex folks that have become trans, but this is NOT MUTUALLY EXCLUSIVE. I am not a hermaphrodite. That is not my condition. I personally know some folks that embrace or celebrate that terminology, which is fine. It is not my choice, however, because it is rooted in myth, and not an accurate description of what is possible in the human body. I feel the term misinforms.
I share my story BECAUSE INTERSEX GENITAL MUTILATION NEEDS TO END, AND BECAUSE I NEVER WANT ANOTHER CHILD TO HAVE TO WALK THE ROAD I WALKED! Make no mistake about it, I know that my story is TAME in comparison to the experiences that many of my intersex siblings have endured. REALLY TAME! I was told I was a genetic anomaly and would probably NEVER meet anyone like myself in my lifetime. The loneliness, isolation and the self hatred nearly ended my life.
YET THIS IS UNTRUE!
In 2004, because of the internet, my world became small again. I discovered the AIS-DSD support group online, for women with my condition or variations of Androgen Insensitivity. Now, in 2017, I couldn’t be more proud that it has grown to include anyone of any gender expression, with any of the over 30 different intersex conditions or traits.
A year ago I was awarded the ABSOLUTE HONOR of the position of Communications Coordinator for the support group called AIS-DSD. I now work to support the Board of Directors throughout the year. I help plan and carry out annual conferences and fund raising. But, the major honor that I have is to answer correspondence from folks reaching out for support, from those that have just discovered that they are not alone! Messages from parents hoping to make sense of what they are being told about their child and how to process it and to move forward.
I am a part of an AMAZING team of folks that have truly become family. I never thought I needed to plant a flag and declare that I was intersex to the world. I felt it was something that only those that had earned the right to know, should. I had already told most people in my life, and anyone that mattered to me. Yet, by not having shared this openly and not being visible, I have come to realize that my silence was privileged, and I was latently complicit with permitting shame and misinformation to continue. Well, no more! I am not ashamed! No one ever OWES anyone their openness, but for me it was definitely time. That’s my story. It is a part of me, not all of me, but it has informed my journey...
May it now inform yours.
Mary Mihevic, BA, MSW