Wez Saunders looked after hundreds of people who died in Newcastle during the HIV-AIDS crisis and continued to support Hunter residents living with the disease up until last week.
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After more than 30 years, he has retired retired from the role. During that time he has seen huge shifts in the city's attitude towards the survivors of the virus, as well as in the medical treatment enabling their survival.
He has also experienced huge shifts within himself.
Wez was born a girl in 1954. He was raised as one of five daughters, in a family of 10 children, in the southern suburbs of Sydney. As a child, he confided in his mother his conviction that he was male.
"I remember I was four and I was starting school. I told my Mum, 'Don't forget to tell them I'm a boy', which of course she didn't," he tells Weekender.
"I told myself I was a spy and in order to learn and find out about the world I had to go to school and pretend I was a girl."
Wez said it was his active imagination and his Mum's Christian faith that got him through primary school and the early years of attending an all-girl high school, which he left early.
"My Mum sat on the end of my bed one day and said, 'You're never alone'. She gave me the belief that there was some greater power looking out for me, and whatever happened in the end I would be okay."
Even so, Wez lived as a woman until he was 55, "knowing the person I was could never be seen and could not be shown."
When Wez arrived in Newcastle in the mid-'80s, hoping to finish his schooling and earn a tertiary degree, he could not know he would go on to greatly benefit the city. In turn, Newcastle would benefit from his own journey.
As a mature-aged student at the University of Newcastle, Wez and his best friend Rosie Bristow put their hands up to volunteer for the Community Support Network. The organisation was an arm of ACON, the state's lesbian, gay, bisexual and transgender health service which continues to operate today. ACON's Hunter office opened in 1988 in response to Australia's HIV-AIDS crisis.
"What we mostly did was provide volunteers to support sufferers, and teach family members how to give palliative care in their homes," Wez says.
"The boys would be in hospital month after month because at that point there was no treatment for the disease. We'd do massages, make meals, feed people proper food. Talk to their parents.
"It eventually became a full-time position, which me and my best friend shared. In that time we cared for over 300 people who died in the Hunter. We worked with thousands of people, families, friends. "
It was a time when you could lose hope, but those guys there didn't.
Wez says that at that time, the disease was greatly stigmatised.
"If people were found out they would have their houses egged or cars scratched. There was a backlash against being homosexual, and 97 per cent of those who were HIV positive in Australia were gay men. If you had HIV or AIDS you were a bad person, and you deserved everything you got."
For that reason, he said, the few women clients he had also suffered from social isolation. "They wouldn't tell anybody." In the first decade of the crisis, the virus "was the most horrific way to die".
"There's things in your body, your brain, that have been there all the time. With a healthy immune system they're no problem," Wez explains.
"We had boys with tinea that grew around their nose and eyes, every crevice of their body. There were guys with thrush that went all the way down their throats. It stopped them from swallowing.
"The immensity of it was like living through a war. And there were only a certain amount of people willing to get into that war zone."
A significant group of those people in Newcastle were nuns. Newcastle's Sisters of Mercy established a respite home for HIV-AIDS patients in Carrington, called MacKillop House, which closed in 2000.
"We'd do 24-hour shifts there, it was fantastic. It was just a place where people learned to live again. It was a time when you could lose hope, but those guys there didn't."
Wez says he felt honoured to witness people choosing to support each other.
"It wasn't just death," he says. "We brought families together. We often met people who- the last thing they had told their parents before leaving home - was that they were gay. And then they'd come back from Sydney at 24, 25, to tell their family they were dying. And what we saw was parents really standing up and being counted."
Wez can remember the exact moment his clients stopped dying. By 1996 scientists had developed "combination therapy" - medications that were used to attack the virus in different ways and prevent its replication.
"I was going overseas with my sister. I had a friend who was a client and he was in hospital. He weighed about 43 kilograms and it was his 40th birthday. I didn't really want to believe it, but I knew he was going to die," Wez says.
"Now he works at ACON. They started combination therapy at that point. He was taking about 40 tablets a day. People who have HIV today can just take two tablets, or even one, to do the same thing."
On top of the hardship unfolding around him, Wez admits that moving to Newcastle "was probably the hardest time" of his life.
He was in a city where no one knew that he was anything other than a woman.
"I was just considered a lesbian. I had a female partner and I always told them I wasn't lesbian. But when you look like a girl, you are a girl. If you're living with a lesbian, you are a lesbian.
"The hardest thing was that I knew nothing. I had never met a transgender person until my late 30s, and by that stage I had a lot to lose.
"I had friendships, I had a job, I was going to university. And if I wanted to receive male hormones I had to move to Sydney. It was too scary."
A man grabbed me by the throat in a pub and said to me 'What the f - - - are you?'
- Wez Saunders
But then there was the other, persistent, fear that Wez had carried for his entire life: the worry that he was neither woman nor man enough for other people's expectations.
"I've always worn the same clothes as I do now, and I've always had my hair fairly short," Wez says.
"More than once I have been surrounded by blokes, saying 'what is it?'
"A man grabbed me by the throat in a pub and said to me 'What the f - - - are you?'
"It's always that terror that you'll be in the wrong place and someone will have a go at you.
"It's a feeling that gay men, women, have to put up with. The sense for transgender people is more acute and it just leads to wanting to hide and wanting to be alone."
He says, however, the acceptance shown by the men and families he worked with in the Community Support Network was a guiding light.
"They treated me the way they found me," Wez says. "They taught me that no matter what you've been through in your life, life is just about living."
Working at ACON into the 2000s exposed Wez to different pathways he could take to express the male identity he thought he would have to keep repressed.
It took the ill health of his best friend, Rosie, and his partner, to realise that time wouldn't always be on his side.
He was 55.
"I was walking home down Clyde Street and I was miserable," he says.
"I heard an awful noise and around the corner came this old, stinking Nissan Patrol wagon, leaking diesel from everywhere. Across the windscreen it had a sticker saying on it, 'One life, live it'.
"And that was it.
"I went to a staff meeting and put my hand up and said, 'I have something to say. As of today I want to be called Wez'. Everyone just clapped."
He travelled to Sydney to receive male hormones and was able to get surgery to remove his breasts that same year. A procedure, he says, he felt lucky to be able to afford.
"When I woke up and my chest was flat I felt ... 'Yes!'," he says.
"A long time after that I had no nipples and I would just walk along the beach and people would look at me like something was wrong.
"No one could cut me down."
He also found that his family was accepting.
For the past 10 years Wez has volunteered with the Hunter Gender Alliance, working with transgender people and medical professionals to increase understanding of the health needs of gender diverse patients.
He also runs a weekly support group for transgender teenage boys and their parents.
"Too many kids hurt themselves because they feel like they have no other choice," he says.
"I get calls from Tamworth, Dubbo, Armidale. It's the same issue everywhere but the families don't have the same resources."
While younger generations have access to a lot more information than Wez did as a child, he says there is still a need for role models who show young people that being transgender is not something to be ashamed of. It is something from which to draw strength.
"You know both sides of the coin, and having that combination gives you insight nobody else can have," Wez says.
"It takes years to come to terms with and years to work out how you want to represent yourself. But that's the same for everybody ... Life is for learning."
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