Following is an opinion piece by Dr Michael Nobele XXY who was a champion advocate for XXY’s the world over, especially to those who struggled with making sense of their lives. This documented account was something that resonated with many and allowed them strength and courage to look beyond a doctor’s opinion and instead to charter their own course. As a community, we will always be grateful for such insight and as a tribute, we feel privileged to share it with you
May he rest in peace.
One Voice 47XXY
The following biography is based on a paper I presented at the Gay and Lesbian Feast Festival, Adelaide, South Australia in 2002. As much has changed for me since then, in relation to how I perceive myself and my outlook, the document has been significantly revised and updated.
Intersex is primarily not a matter of identity nor gender. Rather it’s the biological variation which exists between the polar binaries of the male and female sex. Gender and sexuality classifications have little meaning, or relevance for the intersex because they are terms derived from the concept of the binary opposites – while the intersex themselves exist beyond the binaries. Nevertheless, most intersex people identify as heterosexual males or females, while others may possess identities that exist within the spectrum of the binary genders, or they may identify as asexual, homosexual, lesbian, bisexual or transsexual.
The existence of intersex people has been concealed for many decades because they threaten the man-made laws of nature, which dictate there are two sexes: male and female. Yet, nature does not manifest in comfortable, finite boxes. Rather it exists as infinite spectra of variation. But to our modern scientific mind, this variation threatens to unleash chaos. And what drives science? The desire to control nature.
Eventually, the medical profession could no longer pretend that biological sex was confined to the polar binaries of male and female, but rather some infants presented characteristics of both sexes. Yet, instead of simply accepting that anatomical sex could exist as a spectrum of possibilities, the intersex variations were medicalized: thus requiring surgery and/or hormone reassignment therapies in order to ‘cure’ such ‘aberrations’ and ‘disorders’. In other words, the medical profession believed they could play god and determine which sex and gender a child would be reassigned to, and raised as. And they did this, not for the benefit of the ‘afflicted’ individual, but rather to make the medical community, parents, and society in general, feel better. One of the most compelling arguments made by surgeons and therapists in order to justify their therapies was that, without intervention, these ‘sad’ individuals would be subjected to severe persecution, or their lives would never amount to much. More recently, however, researchers have discovered that intersex individuals who, for whatever reason were spared infant or adolescent reassignment, actually learned to cope well with their intersex state, while many, who were reassigned, continue to suffer terrible traumas as a consequence of the reassignment therapies.
It’s no wonder therefore that few people know that we exist. The messages ingrained into intersex children and adults was, and still is, “don’t tell your friends; don’t speak of your surgery or hormone therapy; don’t rock the boat; surgery and/or hormone therapy is necessary or else your life will be worthless; you will be rejected by society; you will be a freak…” So for decades, intersex people have lived in silence, hiding their realities from the world and being programmed into believing that their lives were invalid.
Conventional males possess two sex chromosomes, one ‘X’ and the other ‘Y’. Conventional females possess two ‘X’ chromosomes. However, I possess three “sex” chromosomes: the two ‘X’ chromosomes of a female, plus the ‘Y’ chromosome of a male. 1 Thus I am XXY. Physicians call this chromosomal variation Klinefelter Syndrome, but many people with the variation prefer to identify themselves as XXYs. 2
Even though it’s evident that I possess a blend of male and female chromosomes, the medical and legal professions had proclaimed that it doesn’t matter how many X chromosomes a person may have, if they possess even one Y chromosome, they are legally classified as a male. In recent years, however, this pedantic definition has been challenged, thus enabling XXY to be legitimately recognized, in some sections of the academic world, as an intersex condition.
Anatomically, at birth, XXYs appear male. However, in their early teens, when conventional males undergo the masculinizing process of puberty, many XXY’s either do not fully mature, or they may only experience partial male puberty, and/or their bodies may undergo various degrees of feminization. Consequently, common medical thinking states that, in order to artificially induce male puberty and minimize feminization, most XXYs must undergo testosterone therapy. However, it’s becoming apparent, usually from anecdotal evidence derived from personal stories of XXYs experiences, that some XXYs suffer greatly, both physically and psychologically, if they are administered large doses of testosterone for the purpose of artificially inducing male puberty. Some XXYs are not diagnosed until adulthood and, while some benefit greatly from the late commencement of testosterone therapy, others, such as myself, found the experience quite traumatic.
The presence of the additional X chromosome was not identified until my early twenties: several years after I had developed the physical characteristics associated with Klinefelter Syndrome. Rather than developing any degree of muscular definition, the lack of adequate levels of natural testosterone caused my hips to become noticeably rounded and I presented some breast development. My face and body remained virtually hairless, which resulted in me appearing prepubescent, rather than an adult male. These days, I would be called androgynous. Then I was called a freak.
Puberty virtually passed me by. I did not develop a strong libido or interest in sexual interaction. I remained essentially impotent and largely unaware of what sex was all about. Instead, I developed a nurturing quality, which subsequently became an important and essential aspect of my identity. Fortunately, my sense of who I was, or my ego, was moulded during these difficult teenage years. It was a process that occurred independently of mind and body altering drugs: a basic human right denied to any infant or adolescent who has experienced reassignment therapies.
During these difficult school years, sexual identity became a constant topic of discussion and speculation. In the 1970s you had two choices: gay or straight. My androgynous physique and uninterest in girls marked me as gay, even though I never displayed effeminate behaviours commonly thought ‘proof’ of one’s ‘gayness’. It was a lack of interest in sex that marked me. “Michael doesn’t have a girlfriend, so he must be gay”, the gossips claimed. The fact that, during my school years, I was not engaging in homosexual sex was ignored! 3 Sadly, the consensus amongst my peers was so overwhelming, I accepted their labels and thought myself gay, subsequently suffering all the shame, alienation and guilt associated with such an identity at the time.
As a consequence of peer pressure, I explored homosexual sex. These activities only compounded my confusions and realizations that I was very different to other males. In my late teens, I still couldn’t sustain an erection. And orgasm, what was that? Looking back, I realize now my strong attraction to males was not the same as a gay man’s. My attraction to males was due to them being so different to me, rather than an attraction based on sameness. Men were strong, they had muscular hairy bodies. They could do things with their penis, which was alien to me. I was fascinated by watching men jerk off and experience their orgasms. It was all alien territory for me.
Yet, on the downside, I found sexual functions distasteful. Not able to produce sperm myself, the smell, texture and, god forbid, the taste made me feel sick. I also learned the hard way that a man’s sex drive could be unpredictable and dangerous. To sum up, my later teenage years were a period of deep confusion. Apparently, I was gay, but I didn’t know what it was like to function as a male, gay or straight, and I didn’t like sexual contact at all.
Around the age of 23, an endocrinologist discovered that my body had never produced enough testosterone for me to undergo full puberty. He, therefore, suggested I commence testosterone therapy. Initially, I resisted the pressures placed on me to commence therapy. Yet, eventually, I crumbled under the constant onslaught of threats and horror stories of what my future would be like if I didn’t undergo therapy, which the doctors claimed would turn me into a ‘real man’. It was insinuated, even blatantly stated on occasions, that my life would be worthless; that I would be a freak; that I would never achieve my potential, and that I would never have any self-esteem (apparently the self-esteem I already had was invalid as it existed outside of the predefined paradigm of being a real man). So, eventually, from the age of 28, after about 6 years of constant threats and ‘counselling’ by my medical specialists, I began testosterone therapy. And I found it to be a horrifying experience.
Testosterone therapy generated profound and traumatic changes in me. I lost contact with who I was and thus my sense of self. I was mortified when I began to grow large amounts of hair, where hair had never been. My voice dropped. I developed a very strong libido but found the feelings unwelcome. I lost contact with my heart and the ability to relate to people in a non-sexual manner. Yet, most frustratingly, while I developed a sex drive and ability to sustain an erection, orgasms eluded me. I just couldn’t function as a ‘normal’ male, and this caused me significant psychological and physical distress.
Worst of all, however, was that the therapy turned me into someone I was not. And, because these changes were artificial, I became a very fearful, aggressive and insecure person. For, on the one hand, I was trying to convince myself that life would be better on the hormones. Yet, I was also fearful that if I ceased the therapy I would, once again, become a freak who has no value or worthwhile place in society.
Rather than trying to investigate as to why my body was not responding as expected to the artificial hormones, the answer was to increase the doses. Firstly, the increased frequency of injections. Even after experiencing a massive nervous breakdown, a subsequent suicide attempt and a two-week holiday in a psychiatric institution, I was persuaded to persist with the therapy. However, after the doctor accidentally stabbed me in the sciatic nerve, thus permanently damaging the nerves and muscles in my left leg, I rebelled and ceased injections.
Still not having the self-confidence to stand up for myself, I was persuaded to try testosterone implants. They bled, caused bruising and nothing changed for me physically or emotionally. I was still an impotent basket case. Two implants became three. Three became four. Four became five. Eventually, my entire leg became painful. I admitted myself to the hospital, the one where my endocrinologist worked. He visited me and said, “the mind can play tricks on us and cause pain when there isn’t any reason behind that pain. But to make you feel better, we will take some tests…”
After a barrage of tests, all hell broke loose. I was transferred directly to intensive care. It turned out my phantom pain was caused by a deep vein thrombosis, centred at the site of the implants, down my right leg and was creeping into my abdomen! Two days later, my endo visited me with a gaggle of interns at his heels. I had the great pleasure of telling him very loudly that, “you can take my implants, use them as suppositories and shove them up your arse…” That was pretty much the last time I ever saw him.
I went cold-turkey and refused any more medical interventions after that life-threatening episode. Later, I stumbled across an excellent medical practice here in Adelaide, which specialized in treating people who fell through the cracks of the heterosexual, binary based medical profession. By then, I was getting sick again. So, I agreed to commence very small doses of testosterone therapy, to alleviate the medical problems the absence of testosterone was generating. Yet, this time my new doctor respected my wish to take only small doses, even though I was reverting back to my prepubescent state.
While it seems that most XXYs receive some degree of benefit from testosterone therapy, my traumatic experience is not unique. Some XXYs who found the attempts to turn them into ‘real men’ psychologically devastating have also either ceased or drastically reduced their testosterone intake. A few reports they feel they are more female than male and have sought female sex reassignment. Some, like me, just didn’t respond to the artificial hormones, as expected. Some identify as male but are content with living as nature had made them, rather than living according to the dictates of doctors and society about how they should live.
I discovered these facts when I began to explore the internet for information on Klinefelter Syndrome. I discovered internet chat sites where I ‘met’ online people with similar life experiences to myself. It was during these interactions that I discovered the term intersex. Thus, for the first time, I found a label which suited both my physical self, but most of all my sense of self. I had found my place in the natural world.
I soon embarked on a journey of self-discovery. I had already radically reduced my levels of testosterone therapy, which was causing my body to revert back to its prepubescent state. The discovery of the term intersex, and corresponding with people who were intersex enabled me to also reject the culturally constructed concept of what it is to be male. I adopted this term and chose to live as an intersex person.
Sadly though, most intersex people cannot completely revert back to their pretherapy states. I only reverted back to about 75% of what I was prior to commencing therapy. While my true self quickly re-emerged after the overwhelming and oppressive weight of the drugs had dissipated, testosterone therapy has irreversibly damaged my body. Therefore, gone are the days when I looked like a teenager, and gone is the slim build and smooth face. These days, fully dressed, I appear very much like a male. I have a deep male voice; my physique generally appears like a slightly overweight male; and I walk, talk and, for the most part, conduct myself as a male.
Yet I am more than a male. I am XXY and I have always known that I have a complex blend of male and female within my being, which has always manifested in my sense of self and also in my physical appearance. Nevertheless, I have absolutely no interest in displaying my female attributes, either in behaviour or appearance. I do not have to prove anything to anyone. I know who I am and that is all that matters.
Having chosen to identify as being intersex, I began to seek out people like me. I soon discovered there were no intersex help services or groups here in Adelaide. I soon learned that in other parts of the world, intersex people had allied themselves with GLBT communities. As stated before, while I ‘identified’ as gay, I hadn’t had any involvement with the Adelaide GLBT community. So I joined my local university gay and lesbian club and entered into the GLBT community as an intersex person.
Since reducing artificial hormone therapy to a level where the drugs no longer affect my appearance and self-identity, my feathers have regrown. Now I soar in the freedom of living and being who I am, rather than existing according to the dictates of others. My confidence and self-esteem are the greatest they have ever been. I know who and what I am, simply because I have had the rare opportunity to establish a point of reference in my life. I have experienced a period when I lived an artificially generated existence; a reality based on illusion and deception; a reality that had little substance, and a foundation based on dependency on drugs. Now I live free of those dependencies, free of those artificially constructed illusions; free of the self deceptions and, most of all, I have freed myself from a medical profession that tried to demand I live according to their man-made concepts of what it is to be male, or what they considered to be a valid and worthy human existence.
I now live as nature made me. I am me and I am O.K.
Initially, I met some wonderful people in the Adelaide GLBT community, who assisted and encouraged me. I began to speak publicly about intersex and my own personal experiences. Nevertheless, while accepted by some, I soon discovered a dark underbelly in this community, which I have been told is peculiar to a small city like Adelaide but is not evident in GLBT communities in larger cities, both here in Australia, or elsewhere.
The standard mantra in the GLBT community was the acceptance of difference and diversity. This was not my experience. I found an overwhelming demand for sameness and stereotypes. I sought acceptance, solidarity, community and support from the various groups within the queer community. Yet, overwhelmingly, I found only loneliness, invisibility and rejection.
After years of being subjected to violent physical and verbal abuse, simply because I appeared physically different, or fighting a medical community who was pressuring me into being other than what I was, I was hoping the GLBT community would be a haven where I would finally be accepted as I am. How naive was I!
I had lost the fight, even before I started. No matter how much I tried to educate, I was hitting a brick wall of misconception and ignorance. I soon realized that binary thinking is so ingrained in our society, people just cannot perceive reality beyond the binaries. I also realised, too late, that intersex is not an issue of identity, but one of biology. As most people in the GLBT community take their biology for granted, their preoccupation is either with their sexual and/or gender identity.
So here am I, on a podium speaking about intersex issues. I am just an ordinary bloke who looks male; speaks like a male; is not effeminate or feminine in behaviour; dresses like an ordinary male — quite boringly actually: jeans, hiking boots, shirts and jackets—yet is claiming to be and live as an intersex person. What was wrong with that picture? Everything it seems!
It soon became apparent that unless I either conformed to certain gay stereotyped ideas, or presented myself as some kind of mythical exotic hermaphrodite, or androgynous stage performing Diva, I had no credibility and so was ignored. I was not male or masculine enough to be welcomed into the gay male community, but neither was I feminine enough to be thought credible as a ‘trans person’, which I wasn’t anyway. So alone in the wider community and now alone in the queer community.
The lowest I have ever felt in my life is to walk into a room full of gay men and be totally and utterly invisible. At least in the heterosexual male community, I was judged by who I was and not what I looked like! 4
Thus, in my experience, as I refused to satisfy fantasies and conform to unrealistic ideals, I was therefore rendered invisible and silenced in the very community which claims it is founded upon acceptance of difference and diversity!
My self-esteem plummeting, my soul being eaten away simply because of feeling invisible and worthless, I retired from intersex activism and walked away from the Adelaide GLBT community. It took a great deal of resilience and independence of spirit. I would rather live a solitary life than to endure a life of invisibility and rejection. I have maintained some GLBT friends and still attend bi-Adelaide functions, but generally, I have found life outside that community far more enriching and rewarding. I am doing other things with my life, which have nothing to do with intersex, identity or sexuality.
Lastly, several years ago I also dropped the ‘intersex’ label. I realize that taking on this label was extremely important in the evolution of my sense of self. I had been wrongly labelled by my peers in my teens, and subsequently failed to live as a gay man. Finding the label which did fit was important. It enabled me to explore and accept myself as I am. But one thing I learned in the GLBT community is how labels can come to dominate people’s lives and restrict other possibilities.
I fully accept I am intersex. I was born XXY. The additional chromosome has had a profound effect on my life, both physically, psychologically, and psycho-socially. I cannot and do not wish to change this. But it isn’t the sum total of who I am. Thus, I dropped the identity of ‘intersex’. If push comes to shove, I will say I am an asexual variant male. But these labels are not the sum total of who I am: they are only facets of a multidimensional being that is me.
Having let go of these labels and people’s expectations of me, I live a happy, centred and rewarding life. And I wouldn’t change that for anything.