Imogen Callaway. YouTube Legend. #InterView

Hi Imogen! Tell us a little about yourself.

I am Imogen. I am now 25, I work in an office, I love stationery, love planning and organising! My favourite animal is a squirrel and love to go and photograph them in the wild at weekends!

What is your Intersex variation?

I have complete androgen insensitivity syndrome or CAIS.

How did you feel after you were diagnosed?

I don't really remember how I felt, I just remember as the doctor told me the doctors head kept shrinking and growing, I don't know how to explain it, but it was growing and shrinking.

I think I felt a bit numb at first it took a while for it to properly hit me.

How do you feel now?

I feel fine now, it doesn't affect me much in my day to day life, the only real affect is the injections as they hurt but that's 8 weekly.

What is your proudest achievement?

Speaking at the conference in Oklahoma as I am a very shy and nervous person but I managed to get up in front of lots of people and speak and tell them about everything I have done!

What is your happiest experience since being diagnosed?

Going to the USA to the orchids in Oklahoma meet up! It was amazing!!

And making so many amazing friends! Including one I met for the first time at hospital in London!

What is has been your biggest challenge in relation to your Intersex variation?

Too many trips to the doctors!!!!!!!!!!

How, if at all, have you found your Intersex variation interacts with your experiences of dating or relationships?

I have found it hasn't mattered, I have always gone with the theory that if they care that I am intersex I don't care about them! I would rather then love me for who I am than anything else!

What is one dream you have for Intersex people in the future?

That they don't feel ashamed and are able to be honest and open about who they are, and for everyone to be fully educated and know about interesex.

If you could give a piece of advice for someone newly diagnosed, what would it be?

Don't feel like you have to hide! Being intersex makes you a super hero of a sort as you are different! Never let anyone make you feel anything other than amazing for being different! And if you ever do feel sad just talk to someone! Talking does really help everything!!!

QUICK FIRE:

Favourite food: Pizza

Favourite film: The Lego Movie, 27 Dresses, Taking Care of Business and The Intern

Favourite hobby: Photography

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Favourite TV show: Once Upon a Time or Lost Girl

Favourite book: The life-chancing magic of tidying up and Alice in Wonderland

Favourite role model: I don't know it used to be Gala Darling or Gwen Stefani, it might not of changed? I don't ever think about it

Name an Intersex role model: Alice Alvarez who was on Buzzfeed, she is amazing and is such a lovely person


Largest Ever Survey Of Intersex Australians Shows High Rates Of Suicide, Poverty

Originally published on BuzzFeed Australia 

A groundbreaking survey into intersex Australians has shown high rates of suicide and poverty, along with a lack of information around invasive surgeries intended to “fix” ambiguous sex characteristics.

 

Open Book Publishers

Intersex is an umbrella term for people born with sex characteristics outside of typical understandings of male and female bodies. It is estimated that between 0.5% and 1.7% of the population are born with intersex traits, which can include atypical genitals, gonads and chromosomes.

The survey of 272 people, from the University of New England, is the largest survey of intersex people ever conducted in Australia.

Co-chair of Organisation Intersex International Australia Morgan Carpenter told BuzzFeed News that most people find out they have intersex traits when they are children. Many undergo coercive medical and psychological treatment as a result.

According to Carpenter, medical intervention is too often about “fixing” bodies to fit typical notions of male and female, rather than focusing on medical need.

“The medical model is broken,” he said. “Medical intervention has been about constructing heterosexual men and women who are capable of performing sexually in ways that are seen as appropriate for heterosexual men and women.”

Alarmingly, the survey found a majority of intersex people who had undergone medical treatment received no information on the option of declining and deferring treatment, while one fifth said they were given “no information at all”.

One participant, known as James, was born with elements of male genitalia and raised as a girl. He underwent two genital surgeries in his youth, but wasn’t told that he had male genitalia to begin with or that they were being removed.

James was left sterilised by the procedure. “I had felt insane because I dreamed I was a boy for so long and it was actually real and I went through it all for no reason,” he said.

This coercive treatment eats away at mental health, with 19% of survey respondents indicating they had attempted suicide.

However, Carpenter said, this alarming statistic was paired with a majority of participants rating their mental health as “good” or “better”, indicating a high level of resilience in the intersex community.

The survey also found intersex Australians have an astonishingly high rate of leaving high school early, with 18% dropping out compared to 2% of the general population.

The survey suggests this enormous disparity stems from bullying and the impact of medical interventions during puberty.

“I nearly died of septicemia as a teenager, due to my genital surgery,” reported one survey participant. “I missed so much school I actually had to drop out entirely. It changed my whole life.”

Another person reported being bullied by a PE teacher, who accused them of being a drug addict after seeing needle bruise marks from medical treatment.

“The lack of any discussion of human diversity in sex education, in biology, in other parts of the curriculum has a negative impact on people,” Carpenter said. “There are consequences for the rest of people’s lives with unemployment.”

Poverty is also a stressor on the intersex community, with 63% of participants earning a yearly salary of under $41,000, and 41% earning less that $20,000.

“There is a lot of trauma, but we are capable of leading happy, resilient lives,” Carpenter said.

The survey found that peer support is crucial for the intersex community. “Meeting happy, healthy intersex people online caused a complete and radical shift in my thinking and wellbeing,” wrote one person.

Carpenter also pointed to the diversity of intersex people when it comes to sexuality, with almost half of respondents identifying as heterosexual, 22% as bisexual, 18% as lesbian or gay, and other labels including queer, asexual and no label. Over a third selected multiple labels.

“We are so diverse, and it’s wonderful to see that in print,” he said.

“It really does show what we have in common. We don’t share a common sex classification, we don’t share a common gender identity. But we do share a common experience of stigma and discrimination.”

http://www.buzzfeed.com/lanesainty/largest-ever-survey-of-intersex-australians-shows-high-rates

 

 

Georgiann Davis. Total Boss. #InterViews

Hello, Thank you so much for taking the time to answer these. First off, tell us a bit about yourself. 

I’m an assistant professor of sociology at the University of Nevada, Las Vegas. I’m also the former president of the AIS-DSD Support Group (2014-2015), and a current board member for InterACT. I’ve written numerous articles on intersex in various venues ranging from Ms. Magazine to the American Journal of Bioethics. In my book, Contesting Intersex: The Dubious Diagnosis (2015, NYU Press), I explore how intersex is defined, experienced, and contested in contemporary U.S. society. You can read more about my work at www.georgianndavis.com

 

What is your Intersex variation? 

I have complete androgen insensitivity syndrome. It was discovered when I was a young teenager, but I wasn’t told the truth about my diagnosis. Several years later, when I was 17 years old, my internal testes were removed.

 

How did you feel immediately after you were diagnosed, and how do you feel now?

I didn’t learn I was intersex until years after I was diagnosed. Instructed by doctors, my parents kept the diagnosis from me. When I learned the truth, I was confused and deeply ashamed. I was mortified, not because I was intersex, but because I didn’t understand why people lied to me.

 

Today I feel fortunate to be intersex. I couldn’t imagine my life without it. I’ve met so many amazing people in the intersex community from all around the world, and I’m pretty damn lucky to have a career in a reasonably accepting workplace. While colleges and universities are far from perfect, they are, in my opinion, some of the safest and most accepting places in our sexist, racist, ableist, classist, and homophobic society for marginalized folks to work.

  

What has been your biggest challenge in relation to your Intersex variation? 

I’m 35 years old and I very much want to be a parent, but I can’t have biological children. While I realize adoption and/or surrogacy are options for those who can’t have biological children, I’m also well aware that those routes require an incredible amount of resources, financial and otherwise. However, in the grand scheme of things, when I consider my career, overall health, and the like, it seems selfish to dwell on the fact that I’m unable to have biological children. There are others ways to parent.

 

But, an even bigger challenge that I deal with on a day-to-day basis is finding high quality healthcare. Doctors are ignorant when it comes to intersex. They want to make everything about intersex, when they know little about it. They also can be very offensive and voyeuristic in the questions they ask about my experiences and my body.

 

Your research is focused on a feminist sociology of diagnosis. Tell us more about that.

Mainstream medical sociology is really white, masculine, and heterosexual. Many, although certainly not all, medical sociologists don’t critically engage race, feminist, or queer theories, when they ought to in order to more fully understand medical processes and practices.

In my work, I try to bring feminist theories, especially those centered on gender, to mainstream medical sociology.

  

How do you reconcile intersectionality within your research on Intersex traits? 

This is a great question. In my thinking and writing about intersex, I attempt to examine how race, class, gender, sexuality, and the like intersect to shape each intersex person’s experience in unique ways. For example, I’m currently thinking about how whiteness and middle class resources and ideologies shape U.S. intersex advocacy. To assume intersex is experienced the same by all people is dangerous. One concern I have is that many studies on intersex rely on the experiences of those involved in peer support or advocacy. The problem here is that these spaces are very white and middle class. I’m not sure why this is, but I suspect it has to do with the fact that people of color don’t feel welcome in such spaces, and/or perhaps intersex is not so central in the lives of people of color who are forced to face social problems they feel are more dire including police brutality, educational inequalities, and more.

 

In your book ‘Contesting Intersex’ you talk about relationships between language, binary understanding of sex, gender, and sexuality, and unnecessary medical intervention. What impact do you think language has on understanding Intersex?

Words have power, and I strongly feel this power can be used to control people’s actions or, more specifically, how people respond to the intersex diagnosis. If you present intersex as a medical problem known as a disorder of sex development, you’re likely to warrant a medical response that’s medically unnecessary but also irreversible. As one of my participants shared with me, “I’m not disordered.”

 

As an academic, what kind of role do you see academia playing in furthering Intersex education and equality, particularly in Intersex activism?

Academics who study intersex should play a supportive, rather than lead, role in our fight for intersex rights. Academics should ask intersex activists what data we need, what research questions we want explored, etc. This is our fight because it is our bodies. We need you cheering us on in a background role, not standing in the spotlight for your own academic gain. When journalists reach out to academics, I’d hope they redirect the journalists to activists who vulnerably put themselves out there on a day-to-day basis not to build a CV but to change the world. As an intersex academic, I’m trying to be more mindful of my position as well. All academics, myself included, need to share the spotlight, step back, and let others voice their concerns.


If you could give a piece of advice for someone newly ‘diagnosed’, what would it be?
I encourage you to connect with other intersex people. Feeling alone while you navigate the intersex diagnosis and medical recommendations can be intimidating.

 

QUICK FIRE: 

Favourite food: Miso Ramen, Gyros, and Chocolate Ice Cream

Favourite film: The Shawshank Redemption

Favourite TV show: Big Brother

Favourite book: C. Wright Mills’ The Sociological Imagination

Favourite Intersex role model: Intersex activists near and far. They’ve taught me that we are in this together.

Read more about Georgiann and her work:

www.georgianndavis.com

BUY HER BOOK! Contesting Intersex: The Dubious Diagnosis http://nyupress.org/books/9781479887040/

 

ASOS Likes - What’s it like to grow up intersex? Suz Temko tells us

By Lotte Williams

While 2015 was a pretty great year for increased awareness and acceptance towards the transgender community, there is another ‘term’ that 2016 is definitely not so familiar with. So we caught up Susannah Temko, a 24-year-old political strategist, intersex advocate and total boss  who lives in London to tell us all we need to know about the intersex community.

What does intersex mean?
Intersex is an umbrella term describing people born with variations of internal and/or external sex anatomy resulting in bodies that can’t be classified as the typical male or female. We’re usually taught that sex is merely black and white, ‘male’ or ‘female,’ but that’s not true. Intersex-bodied people make up approximately 1.7% of the world’s population (about as common as red hair or twins).

sophiegreenphotography.com

How do we know the gender of a child with an intersex condition?
Intersex individuals will identify as female, male, man, woman, or a multitude of other identities, just as non-intersex individuals do. Some examples include genderqueer, non-binary, agender, third gender, and it definitely doesn’t stop there. We really don’t know a child’s gender until they are old enough to tell us, so generally we say to assign the child a gender based on the best prediction and allow the child to work it out for themselves once they are old enough to do so. Essentially, pick a gender at your best guess, but realise that you might be wrong!

How do you identify yourself?
I identify as an intersex woman. On the side, I also identify as a peanut butter/red wine Fan, and Tina Fey admirer.

What are the human rights issues surrounding the intersex community?
The keys issues right now are the right to one’s body, to give informed consent, to have the same civil rights and equality as everyone else. In addition, intersex people face discrimination and prejudice, challenges in civil equality (like the right to marriage and ability to correct one’s birth certificate and identity documents later in life). But the international community is gradually rallying around intersex people and intersex activists work incredibly hard to make themselves heard.

What can I do to help raise awareness?
Be an intersex ally! First off, listen and and be an active friend. Much of the problem for intersex people is coping with shame and stigma, though be mindful that someone may want to maintain their privacy. Educate yourself: there are some great resources and inspiring intersex advocates out there. Be intersex inclusive: use the LGBTI and LGBTIA acronyms when you can. Increase the visibility of intersex: like and follow intersex organisations, like IntersexUK and XYSuZ; share articles, blogs, and videos about intersex people.

Find out even more about Suz and the intersex community by watching her video, above, or at her website, www.xysuz.com.


Originally published at https://likes.asos.com/29431/intersex/  

St Petersburg, Russia.

The post I write today is not about Intersex, at least not specifically. Though I would be most grateful if you would stay and read it.

 

I want to write about so much that has happened in relation to Intersex, and what I’ve learnt from some incredible people in the last few months. My life has been forever changed recently, working with some bold and whip-smart women at IntersexUK and connecting with Intersex advocates around the world. Intersex friends and websites told me that meeting other Intersex people would be helpful, but my god, the joy and relief I have felt in the last year is un-paralleled.

 

I can’t start there though. Thankfully this is a blog, so I get to go off-track.

 

This post isn’t linear. It doesn’t follow where I left off some time ago. But I can’t seem to write anything else until I write this. It is the post I have wanted to write since I started this blog. It’s difficult to pinpoint why exactly, but I will try to nail it down here.

 

I don’t talk about this very often.

 

Nearly a year after my first surgery I ended up in a clinic in St Petersburg, Russia alone and relatively certain that I was about to die. I had my Russian teacher, all of twenty-seven, standing next to me, translating what the doctors were shouting at me in staccato Russian. I had just learnt the verb ‘to die’.

 

For a while after chemo ended, especially when I started school, a new school, I was completely lost. I kept having flashbacks in lessons. I was told later in the year that I had PTSD. I would go to the toilet and cry and sweat because I would relive the worst of the last year. I was a few months into remission, I didn’t know how to adjust to my 16 year old life, and I was petrified of the cancer coming back.

 

I couldn’t put pieces together in order to fit in with people around me, my people, who I thought I knew and connected with. I thought I was just like them, but I wasn’t anymore. It was like being monochrome in a colour photo. Life around me seemed bright and promising for everyone else and yet, for me, it was completely grey. I drifted through the day, barely speaking, trying to rely on autopilot.

 

Fatigue from chemo was still severe, and I took regular naps throughout the day, not telling anyone where I went. I took advantage of the school’s kindness and understanding, sometimes going to bed because I couldn’t sit at another lunch with my friends, not saying a word.

 

At the same time, I began to experience stabbing stomach pains. They would come suddenly and would last for an hour or two before passing. It was the kind of pain that instantly made you forget what it was like to feel well. I said nothing about them, but would miss school and lie foetal on my bed. Descriptions of medical maladies are clichéd but all the same these pains were like knives. Or what I think knives might feel like.

 

The pains came and went for nearly six months, at which point I found myself in Russia. I chose to study Russian because I thought it would be awesome. I loved learning a new alphabet, where every composite word was a puzzle to solve, and I wanted to connect to my Slavic roots. The teacher, Mr. Drury, was inspiring and enthusiastic.

 

We got to go to Russia, Moscow and then St Petersburg, and stay with an exchange. My exchange partner was Dasha. She was independent, lively, and beautiful. She made me watch ‘The Fountain’, my ‘deepest’ film to date. She was complex and confident. She took me out of my comfort zone, taking me to a backstreet off licenses and drinking vodka late with her friends.

 

Leaving her, we took the Siberian Express to St Petersburg. We were out of the train barely an hour and the stabbing started, walking down the Nevsky Prospekt. I realised I didn’t have the drugs my GP had prescribed for the pain. For some reason I thought it could be a hunger problem and I went to KFC. Moronic.

 

The pain got deeper and sharper and then twistier. I lay like a feral wounded animal on my hospital bed. I had failed to mime laxative to the Russian pharmacist, a game of charades that will go down in history. I started to cry. I hadn’t cried from pain in a long time. Fear, yes, but not pain.

 

The decision was made to take me to the nearest Russian clinic, which had a better reputation than the hospital. I limped down the hotel stairs, eyes black from mascara stains, in front of my Russian class. When we arrived at the clinic I was given an ultrasound and told them my history. They quickly deduced that the pain was being caused by abdominal adhesions, from the abdominal surgery the year before, and they were advanced. The adhesions had been pulling or kinking the small intestine and was preventing the flow of content through the digestive tract, and was likely to have caused necrotic bowel tissue.

 

You feel it in your bones when you are being told bad news. I knew what I was about to hear when the phone rang and my grandpa died on the morning we were supposed say goodbye. And when I got cancer. And when my grandma who built her life up after my grandpa’s death had suffered a stroke, and then another one. When the cancer spread to my lungs and I had to tell my parents. When the son of the family who looked after my dad and sister during my illness was diagnosed with cancer. I knew it when the doctor came into my hospital room in St. Petersburg.

 

My only request, and it was desperate, was to be airlifted home. But I was told with all the sensitivity of a missile, that I would not survive the flight and if I didn’t have surgery in the next twenty minutes that I would die.

 

I felt a sheer panic that comes over you when you believe you’re going to die. The streams of tears, like to some child in a grocery store sobbing about cereal, they just kept coming. I cried so violently that it was difficult to speak. The first thought that I was able to get out was ‘tell everyone that you love them, get them on the phone and if you can’t do that then make sure that Mr Drury knows what to tell them’. I listed off about six or seven names for him to tell that I love them. I outlined why I loved them and I think he wrote it down but I’m not sure.

 

A separate and un-vocalised thought was ‘Suz, you will be dying a virgin’.

 

I cannot express the abject pain and deep heartbeak I felt when I said goodbye to my parents over the phone in that Russian hospital. I thought about how my Dad used to say that crying is good because it cleaned your eyes. I knew that Mum and I thought this was it, because she told me that Grandpa would be with me. Juliet ran upstairs and cradled my hospital blanket. I felt so much heartache and grief for my parents. I saw my body as a black hole, sucking them in without hope or chance of escape.

 

The truth, which is frightening to so many, about death is that there is no plan for it, most of the time. You don’t get to plan or anticipate death like you count down the days till the end of the week. I just kept thinking “Not like this. Please, not like this.”

 

In my infinite wisdom I had decided to watch ‘Awake’ right before boarding the plane to Moscow. For those who haven’t had the pleasure, ‘Awake’ tells the story of a young man whose general anaesthetic fails to anaesthetise him and he wakes up during surgery, feeling everything whilst incapable of any movement or ability to give a signal to his condition.

 

The Russian anaesthetist came into my room with the casual gait of someone either very sleepy or incredibly high. “Vat eez your weight?” he asked. I had no clue. My last weight was taken over a year ago during chemo. I gave him a weight that I hoped was a solid ten pounds over the truth. We couldn’t weigh me because the pain was too much for me to get out of bed.

 

I have never felt more relief or immediate shock at being awake.

 

I really don’t know how to put into words how unbelievable it was to wake up the next day. Though that lasted about four seconds, before I realised I had three small holes in my stomach and no observable pain relief.

 

I joked a bit with Mr. Drury but was largely silent for the next few days. The truth was Mr Drury was considered the ‘hot teacher’ of the school and his constant attention, going well beyond what he ever expected to provide as a teacher, made me feel stronger and kind of awesome at first. Mr Drury found English copies of his favourite books to give me High Fidelity and Fever Pitch. When I got back to school some people were genuinely jealous. Though in truth, Mr Drury seeing me limp to the toilet in an open robe tempered the eroticism.

 

It was a tough but swift recovery. Russian pain relief was….lax to say the least. 

 

When my parents arrived, after getting an emergency visa, Mr Drury was finally able to go back to the school group. Though not before my parents and him went out for dinner. They toasted to friendship with vodka, my parents so grateful that he had cared for me so well in their absence.

 

I sat in the room, fresh out of the ICU, the loneliest that I have ever been. I gradually began to experience more emotions that I had apparently put off. I suddenly understood how claustrophobic people feel in lifts and alleys. I started rocking back and forth. I repeated in my head and then out suddenly aloud “I want to go home. I want to go home. I want to go home.” For hours I shook, and rocked, and chanted the same thing until I was sedated and awoke in a different room.

 

We didn’t speak about what had happened, how close we got, how scary it was. Dad bought Blades of Glory and Dodgeball DVDs with English subtitles, and we just played them both in sequence until we got on the plane home several days later.

 

It is such an unbelievable gift that I get to be alive and I get to live. There is a crucial difference. Though I am denied precious few things because of the body I was born into, and they are precious few, I still get to run and laugh and speak and love. Those are luxuries.

 

Every year, in the United States alone around 2,000 people die from obstructions due to adhesions. Once the complications reach a certain stage, it is incredibly difficult to fix. I am a very lucky person. I am so lucky that I still have my life. I think about that when things get or seem bad. It does seem oddly cruel that the surgery intended to save your life can cause the thing that may kill you. Writing about this, it is important not to make an idol out of suffering or illness, and to think about those who do experience a sudden death and do not get to recover and live. I try to honour those people as best I can, and I don’t always do a great job and I’m not always sure how.

 

It has given me a lot of courage and nerve. Confucius said that we have two lives, and the second begins when we realise that we only have one. Though there is a difference of six years between the two events, living after Russia was crucial for me to realise that living in secret and denying my Intersex body was not living at all. My time in Russia pushes me to remember that living in fear, or crippled by redundant shame, would be a disservice to those who don’t get to live. It is important to show people that they matter and to realise that you are equal to everyone.

 

There have been a few times in my life where I wished I wasn’t Intersex. There were times in life where I begged for a lighter burden from my sickly body, for relief for my parents and my sister and my friends. Relief for the inner core of friends whose friendship and love has been tried, tested and then met through chemo and surgeries and scares.

 

Sometimes it feels necessary to justify one's motivation for writing. I write this to express my gratitude for this life, to give testimony to a dark time that many reading this will face, and to show a modicum of respect for those who are not as lucky as I was.

PRESS: "We Are Intersex"

Article originally published in the Times Magazine - 12th December 2015

By Nicola Gill

They look like women, feel like women and have relationships with men – but their chromosomes are male. Until now their lives have been shrouded in secrecy. But that’s all about to change. 

 

Suz Temko, a glorious arrangement of blonde hair, long legs and feline blue eyes, was a typical teenage girl the night she got drunk on vodka at a party and subsequently discovered she was intersex.

 

“I was trying to impress my friend’s boyfriend by drinking a bottle of vodka. Not cool. My dad had to pick me up and he was, you know, not angry but most definitely disappointed.” But when Temko’s hangover seemed to drag on long after her vodka shame had faded, it was her mum she turned to. “I still felt blueuggh days later, and I also found a weird lump in my abdomen. I was 15; I hadn’t had a period. I asked my mum if feeling rubbish and having lumps was some peculiar puberty thing no one had mentioned.”

 

It wasn’t, and several tests later it turned out the lump was actually several lumps of very aggressive cancer. Surgeons operated quickly, but while she was still waking up from the anaesthetic her anxious parents had another bombshell to deal with.

 

What had been presumed to be cancerous ovaries were actually gonads that hadn’t developed into fully formed testes, and instead of possessing a matching pair of female XX chromosomes Temko’s were male XY ones. “My parents were told all this along with the news I’d need several months of hardcore chemo. Understandably, when I came round, they decided to not tell me I had gonads and XY chromosomes, figuring we’d deal with that, somehow, later.” Later came when she was 16, after an all-clear from what Temko still thought was ovarian cancer – pretty much unheard of in a 15-year-old – when her parents took her to see consultant gynaecologist Professor Sarah Creighton at University College Hospital in London.

 

“She sat me down and basically said, ‘You know how you’ve been wondering how a 15-year-old girl could get ovarian cancer?’ And I said, ‘Yes! How the hell did that happen?’ She drew me a diagram and explained, ‘Boys are usually like this; girl are usually like that. But you are different.’ She went on to say that what the surgeons had removed were not ovaries but internal gonads, which had not developed into testes. And the reason I had them was that my body was supposed to develop typically male but for various reasons hadn’t. My initial reaction was, ‘That’s a fascinating biology lesson. Thank you very much.’ I left the room with my parents and that’s when it hit me. I took two steps and crumpled.”

 

Temko, now 24, a political strategist and also campaign manager for advocacy and awareness, has Frasier syndrome. She feels female, dates men, certainly looks every inch a woman – but has male chromosomes. It is one of a wide range of conditions that used to be called hermaphroditism, but are now called intersex variations (or sometimes differences of sexual development). This isn’t about feeling you are one gender when you were born another, or your sexual preferences; it’s basic biology. Some people with intersex variations say they feel truly “in between” the sexes; others identify strongly as male or female no matter what their chromosomes and genitalia might suggest. “We make up not a third sex, as some people have called us, but something more like a constellation of sexes,” says Temko.

 

But the most surprising thing about intersex people isn’t that they are a cocktail of what we traditionally see as “male” or “female”, but that there are so many of them. According to figures, 1 in 2,000 people is born with genitalia considered atypical enough to prompt medical investigation.

 

It’s hard to grasp at first. For a start, where are all these people supposedly in plain sight who are defying our neat notions of gender? This is where a tale of seemingly simple if curious biology turns more sinister. Holly Greenberry, 38, is co-founder of Intersex UK. “I was born with a healthy intersex body and diagnosed with partial androgen insensitivity syndrome (PAIS), meaning my body was partly unresponsive to male hormones, and my anatomy was atypical. My family were offered no support and I was raised as a little boy until it became painfully apparent growing up that I was a girl. But my internal and biological differences were never properly explained to me or my family. I was incredibly fortunate to be raised in a loving, supportive environment, but if I’d had any sort of professional emotional support, it would have made life significantly easier.”

 

She doesn’t want to go into details, but the stream of operations through her childhood, twenties and into her thirties, some trying to reverse earlier surgeries, some to repair procedures that deteriorated as she grew up, have left her physically scarred, led to enormous complications and a cycle of further hospital admissions.

 

“I felt I was unique and alone,” says Greenberry. “I turned down many opportunities early in life and struggled educationally. I walked away from a great modelling contract in my late teens because I couldn’t handle anything about my scarred body, and my emotional life was a train wreck. Taking artificial female hormones to replace the natural hormones which my body can’t make has also left me experiencing difficult HRT-related symptoms.” She has since pursued successful careers in both television and property, but current legislation and her wrongly assigned sex at birth means she cannot legally marry as a woman and cannot change her birth certificate.

 

Our pigeonholing of sex wasn’t always so concrete, and in many cultures it still isn’t. Some Native American cultures, for example, are perfectly at home with “two spirits”, those who fall between our ideas of gender. They are left to mature happily into intersex adults. In Samoa the Fa’afafine are neither male nor female and are an integrated part of society.

Tanya Ni Mhuirthile, a law lecturer at Dublin City University specialising in the law and the body, explains how we, too, used to be happy with a more fluid idea of sex.

 

“As far back as the 1200s the law recognised the existence of intersex people. In the 1600s the Chief Justice Lord Coke wrote about intersex people and referred to their right to be recognised as male or female of their choosing by law. But over time that visibility and the rights of intersex people in society slowly vanished.”

 

She explains that once people moved from the countryside into cities in the industrial era, this change accelerated. “People were linked to nature. They knew that sexual variation occurs everywhere. Women were the only ones in the delivery room and no one was judging or counting. But that all changed once power shifted from the land to the gentry – and with the birth of factories, the labour force needed to be quantified. It became compulsory to register births, and there was a space for the baby’s sex.

 

“Suddenly, there was no room for ambiguity. Our natural differences in genitalia became medicalised, an aberration to be ‘normalised’, and sex assignment became the norm. That’s the point at which everything intersex went underground.”

 

And it’s remained there ever since, with children lied to about their true intersex birthright – their own medical histories kept hidden from them – or left to flounder through their adolescence, avoiding changing rooms, mortified by their own bodies, mystified by their apparent non-conformity. At least, that was the state of affairs until Greenberry co-founded Intersex UK (with the slogan “No Body Is Shameful”).

 

“The procedures intersex babies and children are subjected to often result in permanent infertility, pain, incontinence, loss of sexual sensation and lifelong emotional suffering,” says Greenberry. “The incredible thing is that whenever I tell anyone my story they react with utter horror and astonishment. They ask how this can be happening without them knowing, still going on in hospitals around the UK.”

 

 

Greenberry has recently become the first intersex person to address the United Nations, which is now calling on all countries to “repeal any law allowing intrusive and irreversible treatments, including forced genital-normalising surgery, involuntary sterilisation, unethical experimentation, medical display, ‘reparative therapies’ or ‘conversion therapies’, when enforced or administered without the free and informed consent of the person concerned”.

At a recent two-day UN conference in Geneva to look at intersex rights, the high commissioner for human rights, Zeid Ra’ad Al Hussein, admitted he himself had known little beforehand. “Too many people assume, without really thinking about it, that everyone can be fitted into two distinct and mutually exclusive categories,” he said. “But in fact human beings – like most living beings – are more diverse and complex than that.”

 

So far Malta has led the way. As of April this year, intersex babies no longer undergo a clitoridectomy at birth on a clitoris deemed too large and penis-like, or are force-fed hormones to “turn them into a boy” despite having ovaries, or are castrated (90 per cent of intersex babies leave the operating theatre as girls after “normalising” surgery, on the grounds that it’s much easier to take away than it is to add).

 

In 2013 Germany became the first European country to pass a law allowing a birth certificate to be marked with an X “to take the pressure off parents to commit themselves to gender immediately after birth”, according to the interior ministry.

 

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So far the UK shows no signs of following suit. The Home Office says there are “no plans” to consider a gender neutral symbol on passports or birth certificates or for the latter to be left blank until a later date. There is one lone parliamentary voice calling for change – Lord Stevenson, who was born with hypospadias, in which the urinary opening is not in the usual location, a condition affecting some 1 in 300 boys (and some girls, but less noticeably and obviously), and a figure that, according to Great Ormond Street Hospital, is increasing for reasons not yet understood.

 

While hypospadias is often not included under the intersex umbrella of conditions (although many who have it do identify as intersex), Lord Stevenson understands only too well the shame and stigma that come from being differently formed. “There are resonances between my condition and intersex variations. For my whole adolescence and early adulthood I had to conceal my difference, the fact I wasn’t the same as others. And it wasn’t until I was in my thirties I realised I was not alone, that there were others like me and they also had difficulty forming relationships, doing normal things like getting undressed in a public changing room in case they are exposed. There are a lot more people around with intersex conditions than people realise – and there is a role for legislation. For instance, in debating the same-sex marriage bill, there wasn’t a space for those yet to declare which sex they wish to be considered. It’s also wrong that we operate on babies first and consider how that operation has affected them later. What sort of normality is it when a surgeon ‘corrects’ a penis because he has some sort of idea of what a perfect penis looks like? We are feeding intersex teens hormones and subjecting them to constant surgery. It’s terrible. I’ve had letters with stories that have made me literally weep at what intersex people have been through.”

 

This saddens Intersex UK co-founder Dawn Vago, who, like Greenberry, has fought hard to be proud of who she is. Vago, 35, lives in Warrington with her husband of ten years and works as a programme director and singer. She has complete androgen insensitivity syndrome, which meant that although she was born with apparently typical-looking female genitalia, she lacked the internal reproductive system of fallopian tubes, a womb and ovaries, and had internal testes. “I was told from a very early age I was ‘different’. My parents agreed to my testes being removed because they were told that, if they didn’t, I would develop cancer. This isn’t true – the risk of cancer is lower than other female cancers in typical bodies, and with check-ups my body would in all likelihood have remained healthy. What we also weren’t told was if they had left my testes inside me the testosterone would later convert to oestrogen. Poor medical advice led to osteoporosis and 11 broken bones due to the mismanagement of synthetic hormones I was given.”

 

Vago was told no one else in the country had anything like this. “There were no support groups; there was no one that I could identify with. More importantly, there was no one for my parents to speak to.

 

“I was very lucky – my parents were full of love, openness, understanding and care. Unfortunately, I didn’t receive the same care and attention from the medical profession, who held quite a bit back. I think the low point was when I was in my early teens and told my doctor, with elation, that I had a crush on a boy who liked me – I wanted to tell everyone. But she very quickly and nervously looked to another doctor and I was escorted into another room, where I was then put onto the table. Something was inserted into me and I was told this would have to be done on a regular basis as I had a shallow vagina. This affected me greatly – emotionally and intimately. It wasn’t something I wanted to have done to me at the age of 14.

 

“This wasn’t the first devastating moment I’d experienced with the medical profession. My parents had previously been told, ‘No man will ever love her,’ and instructed to push me into a career. Even though I’m married to the most amazing man, those words still circle around my head and I have to consciously shake them away.”

 

ago had some dark times but found support in her early twenties. “When I met other people like myself and I realised how many of us there are, it blew my mind. I was so happy, so, so unbelievably happy, but then that turned to anger. Why was I not told? Why had that been kept from me? Why were my parents not told this? Why did I grow up in a world of shadow and shame? It shouldn’t have been like that and that’s why I’m standing tall now.”

 

However, there are some signs of intersex issues filtering into mainstream life in the same way that trans issues did before Caitlyn Jenner’s celebrity transition brought them into the limelight. An MTV teen show, Faking It, features a character who happens to be intersex and the 2015 Rainbow List of the 101 most influential LGBTI personalities in Britain, published last month, included Vago and Greenberry at No 5, along with stand-up comic and fellow intersex advocate Sarah Graham at No 2. Lady Colin Campbell, who was born intersex, brought up as a boy named George and forced by her parents to have hormone therapy to keep her “male” as a teenager, made headlines recently in I’m a Celebrity ... Get Me Out of Here!. President Obama notably hosted several prominent US intersex activists at the White House at the end of November to coincide with the US premiere of Eddie Redmayne’s Oscar-tipped The Danish Girl(although intersex advocates are keen to emphasise the distinction between transgender and intersex issues).

 

A few young intersex adults in the US have banded together to create the hashtag Intersexy. One of them, Emily Quinn, has also acted as an adviser to the producers of Faking It, and has now started a YouTube channel, Intersexperiences, to speak frankly – and at times very humorously – about life as an intersex person. “I think I’m part of a new wave,” she says. “It was a tough decision to put myself out there as openly intersex, but at the same time it was quite simple. If it helps anyone not be operated on without consent or feel less alone and confused, it’s 100 per cent worth it. I was expecting a lot more abuse than I received and most people have been pretty wonderful. I think ‘intersexy’ is a great word for us to show the world that intersex people’s bodies are sexy, too.”

 

Since 2006 the NHS guidance has been that when an intersex baby is born, a whole team of experts should be brought in to support the parents medically and emotionally. The official policy is that there should be no rush or pressure to assign a newborn to either sex while the parents are helped to understand the complexities of their individual child’s case, and that surgery is not the default option.

 

But the whole issue of intersex babies and children appears to be highly controversial. Finding someone to talk officially about it is difficult, even off the record. One willing to talk openly is Professor Sarah Creighton, who counselled Suz Temko and is one of the leading specialists pushing for change in the treatment of intersex babies and young children. She co-wrote an excoriating (by medical standards) paper in The BMJ in late September called Parental Choice on Normalising Cosmetic Genital Surgery. In it she made it clear the 2006 official NHS “no surgery” guidelines were being treated with the same respect a toddler affords the idea of table manners.

 

According to Creighton, “Paediatricians have previously stated that the determining factor in deciding to raise a child as a boy is ‘the size of the phallus’. Newborn penile size charts were used in the Sixties and any child with a penis of stretched length less than 2.5cm was likely to be assigned female regardless of the underlying diagnosis. Feminising genital surgery usually followed. Genital assignment has become less simplistic but normalising surgery remains common.” She goes on to say that “the rate of female assigned and surgically feminised children who reassign as male” later in life is “of concern”, and that, “An additional, non-surgical care protocol is required to enable parents to cope with what may feel like an insurmountable pressure to appear normal.”

 

“In the UK,” she notes, “genital surgery for children with atypical genitalia remains part of standard medical care,” adding, “Given the increasingly adversarial atmosphere in this field, more of the same is not an option.”

 

Holly Greenberry points to the case of separated parents Michelle and Kyle, in the news this month, who are in dispute as to whether their intersex son, Aubrey, who had feminising surgery but now wishes to be a boy, should be raised male or female. “This poor child has lost his genitals – these should be his for life. Why are doctors ignoring these mistakes? My own experience of offering support to parents on the front line is that ‘non-surgical’ alternatives simply aren’t what’s happening. I’ve sat with mums with tears rolling down their faces, trying to deal with what they and their child are facing from the medical profession. There is still a benchmark cut-off point where there’s an atypicality of genitalia – and scalpels are seen as the answer.”

 

She argues that there is not a single record of any infant having died as a direct result of having either a clitoris larger than 9cm or a penis smaller than 2.4cm. “Surgery is intersex genital mutilation, IGM, and no different from FGM. Scalpels don’t sculpt gender; they sever futures.”

 

But Dr Joe Brierley, chair of the ethics and law advisory committee at the Royal College of Paediatrics and Child Health, argues that it is often parents who are driving gender assignments.

 

“Sometimes it’s the child’s family who say, ‘We don’t want them going to school looking like that – what will happen in the changing rooms?’ They are the ones suggesting ‘normalising’ surgery, despite medical teams urging them to hold off, hence the need for expert multi-disciplinary support. As far as I know, this type of surgery no longer happens in infants, though I am unaware of any UK or international register of procedures.”

 

Ieuan Hughes, a paediatrics professor at the University of Cambridge, offers a different perspective. “Is it really desirable, and indeed practical, to ignore the accepted practice of mankind’s binary sex and raise an infant born with indeterminate sex, aka intersex, as a third sex?” he argues. “How would the parents of such an infant cope with that idea? To my knowledge, nobody in the UK has followed that practice and it certainly is not recommended by specialist clinics that care for families who find themselves in this challenging situation. It is recommended that intersex infants should be gender assigned (female or male), although the decision may take a number of weeks pending the results of investigations, some of which may be complex. But delaying an assignment so that the sex remains indeterminate until the child has sufficient cognitive development to engage in the decision-making is not on the agenda. What is paramount is the importance of teamwork among professionals when supporting a family with an intersex child.”

 

In October, Greenberry, Vago and Temko went to Plymouth University to give a talk to the medical students and staff. A no-holds-barred Q&A session took place afterwards. “Basically, the students’ jaws dropped,” says Greenberry. “They couldn’t believe we’d stood everything they thought they knew about biological sex and gender and ‘abnormalities’ on its head.”

Dr Siobhan Moyes, the lead for anatomy teaching at the university, says she has changed the way she lectures as a result.

 

“The students were incredibly receptive and it was an epiphany for me, a major shift in my mentality. I’ve stopped talking about ‘abnormalities’ and talk about ‘differences’. I now tell students it’s perfectly normal to have different genitalia, different courses of nerves or different-sized sex organs. Everyone is unique. I could probably count on a very small abacus the number of completely average people in the population.”

 

Intersex UK now plans to hold further talks with other medical schools to teach the next generation of doctors that there are many healthy, natural shades between pink and blue. “Something is changing,” says Temko, who now has a policy of being open about herself with work colleagues, boyfriends and friends, and also blogs about all things intersex at XYSuZ. “Gender fluidity, more open attitudes and open minds – the conversation has changed so much, and the idea that ‘no body is shameful’ actually seems to be becoming real. It’s exciting.”

Diagnosis or 'You Can't Do This Here'.

"Would you like to know why you got cancer?"

This question haunts me now. Dr Creighton, sitting opposite me at a large wooden desk, looks at me from behind her glasses. Her eyes are warm but serious. She's clearly on her game and I think that I would like to be like her one day. I am completely oblivious to what she is about to tell me. I look at her with enthusiasm and delight. No one ever gets to really know, how lucky am I? Why did a fifteen year old get ovarian cancer? This whole ordeal is going to be wrapped up and put away. This is going to be closure.

She starts to draw a diagram. She explains how babies come to be, and what chromosomes boys and girls normally have. She says boys are normally XY, and girls are normally XX. She says that these chromosomes determine the development of gonads into testes or ovaries. She say in this case, in my case, I have XY chromosomes but they didn't do what they were supposed to and so I reverted to phenotypic female. She explains the difference between phenotype and genotype. I am fascinated. She says that because my gonads never developed that they became cancerous. The wrapping is finished. Here is your box. 

The conversation ends with a handshake. I walk a dozen steps out of the hospital and into a bright June day in London. It's hot. I start to shake. I feel faint. There is a ringing in my ears, distinctly different from the tinitis leftover from chemo. She was talking about me. That was no biology lesson. She was talking about me. 

I can't breathe. I can't look anywhere. I know my mum is next to me but I feel like the pavement is jerking around like an earthquake. Suddenly, she's miles away and I'm alone and I don't know anything anymore. Nothing makes sense. What the fuck is happening?

I snap back into London. I can hear sirens. I can hear cars. I can hear my mum. 

"Are you alright? Do you need to go back inside?"

"No." I feel tears well up to my eyelashes, my lids keep them back like dams about to break. I feel hot like menopause. I feel my hands swell and sweat. I become acutely aware that we are in the middle of London. I'm having a panic attack and I realise that I can't do this here.

"Did you know?" I make myself look at my mum.

"Yes. Are you angry?" She looks at me with eyes full of apology and worry, and I instantly understand. They couldn't have told me during chemo. We didn't know which way it was going to go. Why tell a bald, sick, fifteen year-old, grappling with stage four cancer, that she has XY chromosomes and her ovaries were not really ovaries. She explains that back in November Dr Townsend came out of surgery white as a sheet and told them his suspicions. The other ovary didn't look like it was 'supposed' to and he suspected that there was something else afoot. 

The train home is near silent. I decide not to go to the fifth form prom. I think about the Kate Moss inspired, off-the-shoulder, yellow chiffon dress from ASOS. I was so excited about it. I finally have a wig that looks like real hair. But I don't feel like wearing a dress tonight. I watch a movie and wait for it to go dark outside. 

I stare blankly at the screen. My dad comes home. He's had a couple drinks with work friends. He cries and says he's sorry. He's worried about me and he wants to make it better. The Krispy Kremes and comedy DVDs that distracted me from cancer won't do here. He's Ashkenazi. He feels responsible, even though he isn't. It's no-one's 'fault' because there is nothing wrong with my body or who I am. But I don't know that yet. He loves me and he is proud of me, he supports me but he doesn't realise this makes me feel my first ounce of shame. Why would he be crying if this wasn't a 'bad' thing? Why would he say 'sorry' if he hadn't inflicted harm? At twenty four I know this is because the year has been terrible for him, he's had to watch his first child go through surgeries and chemotherapy with no certainty of the outcome. He thought he would lose his daughter to cancer. He's trying to show me he loves me. But at fifteen, I think that this means that I am wrong.