"I would like to see a world where no one identifies as either male or female, but that we just acknowledge each other as human beings."

Recent estimates suggest that as many as 1.7 per cent of people are born with attributes that don't fit the typical definitions of male and female.

But for many intersex people, the challenges arise not from their bodies, but from a world that struggles to tolerate difference.

Alice Springs-based musician Shon Klose is an intersex advocate who is speaking out for a better understanding of this vastly misunderstood syndrome.

This is Shon's story:

My name is Shon and I was born in Brisbane in 1966. I first realised I was intersex when I was 16 years old.

I'd finished school and applied for nursing and as part of that process I had to have a medical examination. During the examination the doctor asked me about my menstrual cycle and I'd never had a menstrual cycle.

My mother is a nurse and she was quite concerned but I had a strange intuitive inkling that something wasn't quite right with me, I didn't know what it was, but I knew there was something a bit different, it's hard to explain.

After four months I still hadn't had a menstrual cycle so I was sent to a specialist. I was alone, my parents weren't with me, I think everyone was expecting something really simple.

During the examination it was apparent that I was actually quite different. I have a variation known as Mayer-Rokitansky-Kter-Hauser syndrome, or vaginal agenesis. I was born with no internal reproductive system.

It was a huge shock. I think I became quite atrophied, and I think that was mainly because of the specialist's reaction to me. He didn't really know what to say, he had not come across someone like me before.

When he did the examination his response was 'Oh my god, you don't have a vagina'.

He took me into another room and did an ultrasound and said 'Oh my god, you haven't got a uterus, I can't see any ovaries and you've only got one kidney by the look of it, you'll have to have surgery, you'll have to have this corrected'.

It was the mid 80s; people didn't know a lot about these conditions, it wasn't well documented and I was told I was one in a million.

There was pressure from the doctors and pressure from my family to have surgery and that surgery was basically a vaginoplasty.

I went through a huge amount of trauma. I wasn't offered any counselling, there was no support, no information.

I was coming into that place where I would have liked to explore my sexuality. I was realising that I was same sex attracted, but I was also attracted to males. So I was deeply confused. I shut down effectively and I shut off from my family.

In their eyes I wasn't the Shon that they knew anymore. It's strange. It was almost as though they were looking at me with such pity and they didn't quite know how to relate to me anymore.

There was never an option of living with my body and of other ways to be intimate. I guess it was all about penetration and if I had that surgery then I would be able to be a successfully heterosexual person and live a heterosexual life, so I was basically forced to have this surgery. Not forced, pressured, to have the surgery.

A vaginoplasty is an incision...there was no opening there at all, it was just solid muscle, so I had to have a glass tube sewn inside me for 14 days. I had a catheter and I couldn't sit or stand, it was so extremely painful. I had 75mg of pethidine every four hours for two weeks.

One day I was lying there and the surgeon came around with a whole lot of interns and drew the curtain. He asked me to spread my legs so he could show them the success of the surgery. He hadn't talked to me, hadn't discussed it with me, hadn't given me any heads up that he would be coming around.

I remember being so angry and luckily I'd been a nurse and I knew what my rights were and I refused. He became quite angry with me because I wouldn't allow them to look at my body in that way.

I got two and a half years through nursing and I was still struggling.

I was supposed to dilate with a glass tube every day for the rest of my life to keep the opening big enough for penetration, but I came out of hospital and tried to do this and it was so excruciatingly painful that I took the glass tube and I smashed it on the ground and I've never dilated again since.

The pressure from the doctors and my family was very, very strong to have corrective surgery. It's not something I would have chosen to do if I had not been forced or highly pressured to be assigned a gender I was not born with.

Unfortunately this is still happening today.

There are a lot of people out there who are experiencing trauma and mental health issues because of the way they've been treated in a pathologised kind of way around their natural born bodies.

When I was diagnosed I was wrong, my body was wrong, my body was not allowed to be my body. There's a wrongness about you that has be adjusted and corrected and we're not given the space to understand that our differences are normal.

Intersex people have been part of society since the birth of human beings. It's a naturally occurring biological condition. There are 40 different variations and they can be chromosomal, hormonal, genetic or physical - it can be one or a combination of these.

In fact intersex conditions are as common as red hair and yet here we are in 2014 and most people do not understand what intersex means.

Intersex people are often given medical intervention when they are babies, or small children, so I guess I urge people, surgeons and families to address their own phobias about difference, to get to the bottom of it, to unpack those thoughts.

Not to force, or make a choice for someone to have corrective surgery unless that person feels as though they are ready to do that, a decision they've made themselves because they have a clear understanding of all the choices.

Shon Klose is an intersex advocate for Sisters and Brothers NT, a support service for people of diverse gender, sex and sexuality based in the Northern Territory. They can be contacted via their website.

(Many thanks to Alice Springs musician Ben Allen for composing and mixing the music for the radio interviews.)