While many of us recognise the “I” in LGBTI+, it seems fewer know what being intersex actually means, writes Cherie Moselen.
FROM THE AGE of eight, intersex male Paul Byrne-Moroney realised his body was different from that of his brothers and other boys his age.
For years, a cruel nightmare cursed his sleep — an intruder would enter his bedroom, pull back the blankets, look at his body and laugh.
Now 54, Paul tells Independent Australia of the distress he endured, living as a stranger to himself:
Swimming with the family was hard. I would leave the pool and change, ahead of my father and brothers. I dreaded them seeing me naked. I dreaded anyone seeing me naked. I avoided sport, because it meant undressing in locker rooms.
As a teenager, the stress of comparing myself to the masculine boys around me was excruciating. It only reinforced my difference — frankly, my ‘deformity’, as I saw it.
Growing up, because of his pear-shaped build and underdeveloped testicles, Paul kept his body hidden. He internalised his painful secret until days became months and then decades had passed. He was almost 30 before he found the courage to ask a doctor why he looked and felt so different.
Paul learned that he had an extra “X” sex chromosome — one of at least 40 known intersex variations. It renders him infertile. He will need testosterone replacement therapy for the rest of his life.
Just six years ago, Paul heard the word “intersex” for the first time. Since then, he has become a national intersex advocate. Most importantly, he has found a community of people who accept, support and understand him.
Paul is a “heterosexual male intersex person”.
As a public speaker, he emphasises the words “heterosexual” and “male”, because intersex is incorrectly but commonly linked with other sexualities and nonbinary gender identities.
While many of us recognise the “I” in LGBTI+, it seems fewer know what being intersex actually means. It is one of several reasons why intersex people feel misunderstood. Simply put — intersex is not an additional sexual or gender identity. Intersex people are as sexually and gender diverse as the broader community.
Typically, humans are born with 46 chromosomes in 23 pairs. The X and Y chromosomes determine a person’s biological sex — most women are 46XX and most men, 46XY. Intersex people are born with naturally occurring chromosomal, hormonal and/or anatomical variations of their sex characteristics.
Paul’s particular intersex variation means he has Klinefelter Syndrome.
Klinefelter Syndrome results when a male child (typically XY) retains an extra “X” sex chromosome at conception, becoming XXY. It is the most prevalent sex chromosome variation and can occur as often as one in 448 births.
The XXY intersex variation causes low testosterone levels, underdeveloped musculature, possible increased breast tissue, hypogonadism (or small testicles) and infertility.
Having XXY sex chromosomes increases the risk of developing some chronic health conditions, learning difficulties and mental health issues, including depression and low self-esteem.
“Being intersex accounted for years of struggle at school, fear, anguish and depression. But with knowledge, I’ve slowly grown to accept and embrace what makes me different. I’ve built self-confidence and developed strategies to transcend my limitations.”
At 35, Paul went to university, got a degree with honours and now works in a state government department. He has also become an advocate for others like him.
He speaks at conferences, health services and other organisations to increase understanding of the lives of intersex people — their nature, diversity, challenges and strengths. He is a member of the Victorian Government Intersex Expert Advisory Group, the Victorian Pride Centre LGBTI community reference group and his local council LGBTI+ community working group.
While being misunderstood rates highly on the scale of prejudice felt by the intersex community, some intersex people also endure physical and emotional torture due to needless and arguably unlawful surgical interventions.
With some doctors still fashionably asserting the gold standard of appearance — looking more female or male – some intersex people are being denied their human rights from the cradle. Like everybody, intersex children may experience health issues that require a medical solution. But, appearance-motivated surgical interventions designed to “normalise” genitalia are happening before patients can give personal consent. And they happen far too often.
Malta is the only country to ban such surgeries. However, last year the Tasmania Law Reform Institute put a proposal to the State Government which calls for criminalising medical intervention that changes the sex characteristics of a non-consenting child.
It is estimated that 1.7 per cent of the world’s population is born with physical or chromosomal sex characteristics not considered “typical” by the medical community. To put this in perspective — the prevalence of people born intersex is similar to that of people born with red hair.
Paul believes no intersex child should inherit the stigma of being pronounced “abnormal” at birth:
Imagine a doctor telling you that because most children have blonde or brown hair and your son has red hair – meaning he may be teased later on – you’ll need to fix his ‘abnormality’.
When doctors can give our children hormones and operate on their genitalia because we don’t fit societal norms, we lose the right to be who we are. These wrongful attitudes need to change.
That’s supposing your intersex baby wasn’t prenatally terminated. Had Paul not been conceived prior to preimplantation genetic diagnosis (PGD) testing, he might not be here today.
‘… It is important to acknowledge that using PGD to select against culturally devalued bodies, like those of people with disabilities or who are intersex, is simply a contemporary example of eugenics.’
Historically – and some countries are still dragging the chain – school sex education classes have taught biology almost solely using the terms “male” and “female”. There has been little in the way of support for gender diversity, intersex or sexual diversity.
That is changing. However, not just in education, but in healthcare, sport and work settings, intersex people are experiencing discrimination. And it will continue, as long as society wrongly believes that dealing with “only” sexual and gender-diverse issues is addressing the needs of the intersex community.
Intersex Human Rights Australia (IHRA) are campaigning for:
‘… access to the same rights as endosex (non-intersex) people: bodily autonomy… the right to a life without stigma and discrimination... LGBT and LGBTI are not synonyms, and we encourage the deliberate use of specific terms appropriate to each situation.’
Released in 2017, the 'Darlington Statement’ parts the cobweb of misconceptions shrouding intersex lives. Offering more than simply understanding the textbook definition of intersex, it asks us to consider: ‘Who are intersex people and what are their experiences?’
"If I could go back and talk to that scared little boy I was, I would tell him, 'You’re not a monster...'"
Intersex Awareness Day – marked annually on 26 October – is an internationally observed awareness day designed to highlight the human rights issues faced by intersex people.
As Australian Human Rights Commissioner Edward Santow said in a media statement:
'… It has become increasingly clear that we need to do more to protect the human rights of people with intersex variations in Australia.'
Discovering the truth about his intersex makeup was massive for Paul Byrne-Moroney — self-awareness empowered him; self-acceptance set him free.
Being mindfully aware of the diversity of our human community encourages respect for each and every one of us. That sets us all free.
While people with sex chromosome variations continue to feel misrepresented, Paul says he will work to keep the intersex conversation alive:
“Although some childhood memories are painful, I’ve learned that when you talk from the head you teach, but when you speak from the heart, you touch.
If I could go back and talk to that scared little boy I was, I would tell him: ‘You’re not a monster. It’s okay to be different — your vulnerability is your strength. You were born to make a difference.’”
For more information or support on intersex issues, you may contact Intersex Peer Support Australia (IPSA).
Cherie Moselen is an Independent Australia assistant editor and a freelance writer.
Support independent journalism Subscribe to IA.