It is only recently that I have discovered the term “Intersex” and how it relates to my body. I like this term because I prefer more choices than male or female, I think there’s a continuum of Male———-to———–Female just like shades of grey from black to white. It wasn’t until I was twenty-nine years old that a label was placed on my physical differences, differences I never quite understood. I had large nipples on smallish breasts, peanut sized testicles and cellulite type hairless fatty tissue over most of my body. I was told at a fertility clinic that I had an extra X chromosome and a Karyotype of 47XXY. I was informed that I was genetically sterile and that my sex glands produced only 10% of what was considered normal testosterone levels for a male. I was advised to immediately begin testosterone replacement therapy. I was told my libido would increase, I would gain weight and my shoulders would broaden and that I would have to do this every two weeks for the rest of my life.
Genetically speaking, my development as a human being was delayed, or perhaps better written, different than my peers. My body doesn’t produce testosterone. Now I know this is a very individualised point, which doesn’t effect and affect many human beings, so bear with me. I have a very vivid memory of sitting on the bathroom sink counter at my friend’s house watching him shave his peach fuzz and looking in the mirror at myself wondering why I didn’t have any? Now, this is the early ‘70’s, so we all had long hair a leftover cultural attribute from the sixties, and I looked way more like a girl than a boy. And it probably didn’t stand out too much to the world, but it sure stood out to me.
I was born 47XXY and diagnosed when I was 15 years old by a paediatrician whom I was seeing for treatment of ADHD. Even before receiving a diagnosis I always knew I was different from my peers. Key moments of realisation of being different were around the onset of puberty or lack of puberty for that matter. During this time I felt confused about my sexuality and didn’t feel the same as other boys.
Have you ever wondered what it would be like to be a mythical being? As a hermaphrodite, I exist in a culture that sees only male or female. Those of us who don’t fit into the rigid sex binary are left out of many of the protections offered to our cousins who more neatly fit the two categories. This leaves an enormous gap in cultural definitions and societal acceptance of my fundamental being.
My journey has three main threads: 1) My personal and often rocky self–development, as I have come to understand and accept what it means to be a hermaphrodite, and finding others of my tribe; 2) recognizing the harm done by my medical treatment and actively seeking to change how the medical system treats hermaphrodites, starting from birth onwards; and 3) identifying what was done to me as a human rights violation.
With my son, I believe his essence is rooted in his genetic uniqueness. I truly believe that having an extra X chromosome gives him some real challenges but he continually faces these challenges with great resilience. He learned to recognize the impact of XXY and to use the attributes associated with the variance to his benefit.
Upon diagnoses, the Endocrinologist informed me ‘Testosterone would make me a man and bring meaning to my life” naturally I jumped at the opportunity as all I had ever wanted was to fit in and I knew it was not something I had ever experienced to that point. Being told I was sterile did not faze me in the slightest, not least because I still felt like a child myself albeit a 37-year-old one, and thus felt incapable of looking after another when I could barely look after myself. Without any counselling to gauge if Testosterone injections were right for me, they were initiated at 200mg every fortnight and within a matter of months, I had begun to feel very uncomfortable about what the Endocrinologist had said. In place of “meaning” my phallus had overtaken my brain and the thoughts of sex and masturbation were constant consuming my every waking moment, my thoughts on sexuality firmly centred on me being a woman in a heterosexual relationship, I was for all intent and purposes, losing my mind.
I have always considered myself highly atypical of Klinefelter’s. I hit puberty in the second half of the 4th grade. By the time I was in 7th grade, I was shaving weekly. Aside from a slight learning disability with Math, I have never had any learning deficits. In fact, I was reading on a University level in the 6th grade. I also grew up with and around music. I began by playing the Alto saxophone in the 3rd grade. In 4th grade, I switched to the Trumpet. In 5th grade, I began playing the piano, and by the end of 5th grade, I added guitar to my repertoire. The other instruments were a great base of technicality and musical theory, but the guitar really spoke to me. I played every day, for as many hours as I could. I would listen to records and learn all the guitar parts by ear. An ear that was previously trained by the other instruments!
I had always been a sickly child, suffering more than my fair share of childhood ailments: asthma, chest infections and flu. Other kids called me a “weaky” because I was skinny and hopeless at sport. I hated rough-and-tumble boys’ games and preferred knitting, but I had no idea my feminine leanings were down to genetics.
Then, when I was 13, I collapsed while riding my bike. My immune system was run down and I underwent a series of tests. They diagnosed Klinefelter’s Syndrome (47 XXY), which means I have three sex chromosomes, XXY, instead of the normal XY for a male, or XX for a female. The condition affects up to one in 1,000 boys – physically I’m male, but genetically I’m male and female.
I was born in 1983 and I grew up in Des Moines a small city in Iowa. From the outside, I appeared to be a quiet young man, soft-spoken, artistic and shy. From a young age, I had crushes on older boys and men. When I was twelve I understood that when kids called someone a fag on the playground they were describing me. I was a fag, I was gay.
I kept my secret the best I could, and admittedly not as well as those before me. When I was in eighth grade I took a bunch of pills in the medicine cabinet and tried to kill myself. I was put under psychiatric care, not for the first time in my life. I grew up in talk-therapy starting when I was four years old. I am not sure what behaviour I had that caused my mom to put me into therapy, but therapy continued my whole life up to my suicide attempt. I had always felt anxious, depressed and alone but not sure as to the reason.
When I was in junior high and took gym, we all showered together. I didn’t notice, but all the other boys always teased me about how small my genitals were. In gym class itself, I could not do as well as others at anything. The teacher graded on a curve, so the lowest part of the curve was me. I passed, but only because he didn’t want me back the next year. I attended a boarding school in India for two years; the boys asked me about the personal parts in the shower there, but no one teased me. All through my teen years, I had very little interest in girls or anyone for that matter. Dances would come and go, without me. Guys would have girlfriends, but I chose to ride around with my best buddy. When I was taking a physical for college, the doctor said my testicles were pretty small and wanted to know if they worked.. I said, as far as I know, they do. (this was in 1965) But he had me go to Indiana University and go thru a battery of tests. Blood sample, Urine sample, Semen sample… No one had an answer.
We were born with an extra X chromosome on the twenty-third pair. (How this happens is of little import save that the extra X comes from one or the other parent.) We are XXY. Our mother had had numerous, between five and 10, spontaneous abortions and miscarriages from ’29 on, and in 1939 was given diethylstilbesterol to prevent them. I was conceived in or around mid-September of that year and born normally in May of 1940. (Telling us of the losses she explained about DES when we were 13. Needless to say, her explanation meant nothing to us at the time, 1953. Our childhood was fraught with our slender sickliness. We were susceptible to infections, bronchitis, and at age five allergies to cat dander and walnuts. We were circumcised at three years of age. The physical trauma healed in six weeks along with German measles. The psychic trauma may never fade completely. (Doctors at the time assured parents that children up to five do not feel pain.)
l grew up in a family on the wrong side of the tracks, we never had much to spare. I was the youngest of three. My brother 5 years older and my sister 18 months older. Life was hard, my father was in a lot of ways like a fourth child, my mother was tough and long-suffering. My father had become mentally ill and suffered from multiple personality disorder. My mother worked two jobs just to keep the wolves from the door and we saw little of her from day to day. My father was in and out of hospitals (mental institutions) and in and out of work. I was always a sickly child and therefore demanding of attention. My mother in the little time she had spent much time on a diagnostic odyssey with me and my ailments.
Like any boy, my older brother was a hero to me when I was little. I wanted to be like him, but while he was really good at sport, I was useless and could not kick a ball straight. I understand now why he did not want me around. He saw me as the annoying little brother who was just a shy gawky kid. School life was awful and I hated it. My school years were the worst time of my life. I just didn’t get it.