Being born with an intersex body
By Laura Inter
*If you find some errors in the English translation and want to collaborate, please write to firstname.lastname@example.org
*Personal testimony during a talk about intersex to public officials in CONAPRED on October 23, 2018.
When I was born, the doctors didn’t know if I was a boy or a girl. I was born with genital differences. They made me a karyotype (chromosomal test) and this resulted in having XX chromosomes. Later I was diagnosed with no salt-wasting Congenital Adrenal Hyperplasia (CAH). I was assigned a girl. I was born in the 1980s in a private hospital. Fortunately, I was not subjected to genital surgeries. I don’t know if this was because the doctor was unaware of the current medical protocols, or to experiment with some type of medication to prevent the so-called “virilization” in girls with CAH, or simply for some personal or ethical reason.
What I did experience were repeated genital exams from one year old to adolescence. Being a small girl, for me it was very difficult to be there, to undress in front of the doctor and that he touched me. My mother was there, and although I felt a little safer because of that, it also caused me conflict that she consented to those exams. I always felt that those genital exams where not ok. I always was afraid, and these exams made me feel helpless and vulnerable. The doctor talked about my body with words that I didn’t understand at all, but I understood that something was wrong with me. That moments were very complicated for my little girl’s mind and left deep psychological scars that cost me a lot to heal.
Thus, as a child I suspected that something was ‘wrong’ with me. Why did I have to go to the doctor frequently? Although I didn’t know exactly what was wrong, because I felt good and mostly healthy. No one told me about my body differences, nobody told me I had CAH, nobody explained to me what the purpose of blood exams or genital examinations was. My mother (possibly just as confused as me, because of the little information provided by the doctors) just gave me a vague explanation, she told me that the studies were to check if I was growing up properly, that the medicine was like vitamins that helped me to grow up, and that the physical checkup were only to see that everything was fine.
In sex education classes I realized what was “wrong” with me. The teacher put two drawings, one of the male genitalia and one of the female genitalia. I didn’t look like any of them. “I’m deformed!” I thought with anguish. It couldn’t be, why happened this to me? My mother had explained to me how sexuality worked [heterosexual of course] but I hadn’t wanted to see exactly how my genitals looked like. I don’t know if that was because of lack of interest, or because of the dissociation with my body that I had practiced for so many years to be able to cope with the experiences that I lived with the doctor. Arriving home, I took a mirror and when I saw my genitals, I felt distress, they were so different … I couldn’t “function” as a man or as a woman in sexuality. I became very depressed, nobody had told me about that … I searched all over my house until I discovered my medical files and, along with them, the words “female pseudo-hermaphroditism” and “congenital adrenal hyperplasia”. I searched the terms on the internet and, as expected, only medical pages appeared to me. That information made me enter in a depression that lasted years. That information made me believe that I was sick, that my body had a malformation, and that my body had to be modified to be “normal”.
I questioned my mother about the surgeries. She told me the doctor never told her about them. I returned to hospitals when I was 16. Many eyes saw my naked body, they told me that I could never have a normal life or a fulfilling sexuality. They told me that I couldn’t even have sex, that my body was not suitable for sexuality, that I had a clitoris that was somewhat larger than “normal”, that my vaginal canal and my urethra were in the same canal, and that I could never experience sexuality with a body like that and that I also will have infections because of my genital configuration (which never happened). All agreed on the need of genital surgery so that I could lead a “normal” life, which for doctors meant a heterosexual sex life.
In one of the genital exams I suffered the most humiliating experience I have had in my life. Was a doctor, she had my mother waiting outside the office because she said she wanted to talk to me first. My mother agreed, thinking that later she would be present at the genital exam. The doctor asked me questions, some of which made me very uncomfortable: “Do you feel good being a woman? Have you ever felt like a man? Why don’t you dress more girly? Why don’t you put on makeup? Are you a lesbian? Have you had sex?” Then he told me that I she had to check my genitals. I felt bad and I wanted my mother to be present, but I also wanted everything to end quickly, I was afraid, and I felt vulnerable like when I was a child. I didn’t say anything. In the genital exam, the doctor said that she couldn’t find her gloves, and she asked me to show her my genitals with my hands according to her instructions: “touch there …”, “stretch there …”, I felt totally humiliated. While this was happening, the doctor said that my genitals weren’t “suitable to have sex”, that “I need some surgeries”. Another thing that bothered me was that in the office there were five doctors at first, one of them asked me if it bothered me that they were there, to which I answered yes, and four left, but one stayed there watching me and taking notes despite my refusal. After they checked my genitals, the doctor told me that she needed me to undress completely. The truth is that I wanted to say no, but I felt helpless and vulnerable, and I was used to obeying doctors’ instructions since I was a child, so I agreed – For a long time I reproached myself for having agreed to such humiliation. She checked my body and told me that treatment with cortisol (a hormone needed to treat CAH) had made me accumulate fat and that I had some stretch marks, that I had to take better care of myself, that I also had more body hair than “normal” and I would have to take hormones (estrogens) to “solve” it. In his eyes I felt contempt. When I heard her and saw her expressions, I started crying and then she told me to dress. When I left the office, I pretended that everything was fine with my mother. I just wanted to go home and for a long time I didn’t want to talk about this experience with anyone. When I finally talk about this with my mother, she wanted to present a complaint to the hospital, but in the end we didn’t. We didn’t go back to that hospital never again.
I researched the surgeries they proposed. I even found videos on YouTube and they were brutal. I didn’t understand how something like that could solve my life, and the results of the surgeries weren’t very good. I thought that after something like that the person would be left without genital sensation.
It took me years of research to find the term “intersex” and reliable and non-pathologizing information related to intersex, information that was written by other intersex people like me. When I found it, usually, it was in English language. I read the articles with a dictionary in hand, it was very complicated because at that time I didn’t speak the language, but each article helped me to heal. I found stories of intersex people and I totally identified with them. I felt that I wasn’t alone.
Thanks to that information I understood that there was nothing wrong with my body and that I wasn’t sick just for being different. Over time I began to deconstruct the point of view I had of my body and replace it with a healthier point of view.
To date, I have never suffered the recurrent infections that doctors said, and my body is quite healthy. Contrary to what doctors told me, I have a good sex life and a very good relationship with my partner. As Gabriel J. Martín, an intersex activist from Spain, said: “there are more things in sexuality than penetration.” Now I like my body the way it is, I even like it more than being born with a typical body. I would only wish that doctors didn’t instill so many fears and prejudices towards myself.
So, thanks to the information produced by global intersex activism and the intersex stories shared by other people like me, I healed in many ways, and I wanted that this valuable information to be available and accessible to all Spanish-speaking intersex people, to help them to heal.
This is how the Brújula Intersexual project began, which curiously started a day after “Intersex Awareness Day”, on October 27, 2013. I started by sharing the little information I had found in Spanish and some Spanish translations, but soon the project start growing when Spanish-speaking intersex people – especially from Mexico- began to approach. They appreciated having articles and intersex stories in Spanish, and information that spoke about intersex without pathologizing it. Over time they shared their stories, even I shared mine. There were also scholars who offered their help and I started to have contact with other intersex activists from different parts of the world. This is how Brújula Intersexual grew more and more, thanks to the support of many people, especially other intersex people who have trusted me, many of whom are now great friends.
If you want to read my full story go to this link: My body [Spanish]
Also see the wonderful text of Hana Aoi: “Make visible the ignored” (Text read during the presentation of testimonies of intersex people in a talk about intersex given to public officials in CONAPRED on October 23, 2018).