In the 1990s, at one hospital, after a blood test, I was told casually, “by the way, you’ve got AIDS”, and then they sent a priest to see me. The priest was preaching on the evils of my so-called “lifestyle” as a gay man. I can link a lot back to that medical experience—my drug use, my criminality. I was never allowed to grieve for myself, and I thought I would drop dead in 6 months. I got into drugs, alcohol, stealing, and was on a jail trajectory. I had a good job and a seven-figure salary before my HIV diagnosis. What happened to me could happen to anyone.
When I came back out into the community, I was asked, “where’s your medical history?” or told, “we don’t deal with people who have been THERE!” It was isolating, and I was in a really bad place.
In the 2000s, I was infantilised. They didn’t offer choices. The doctor just told me what to do. I didn’t take meds for 4 years partly as a result of being treated in this way, didn’t do self-care.
I spent 14 years on the so-called “priority” housing list “because you don’t tick enough boxes”. Housing told me, “if you were still using drugs, in and out of jail, we could house you tomorrow!” I was also told that “every day you pay your rent and remain in stable accommodation, you go farther down the list.”
At another hospital, I didn’t know why weird stuff was happening like my not receiving correspondence about my medical care or not getting appointments. I discovered there was a checkbox still against my name that said “Incarcerated”. Even though that was 10 years ago, no one had unchecked a box in a computer system, back when I had surgery there in 2004.
It’s the hidden things, bureaucracy that continually causes more and more drama that continues to discriminate against people and create health access barriers.
At least if sitting inside a jail, they’re going to have that access. I’ll get fed and have a bed to sleep in. People give up. Sometimes multiple things hit on the same day. Now I can say no, “annoy me tomorrow”.
The old way was 3 years or under out the door, but they changed the rule. They can’t keep you in jail, but you have to have somewhere to go at your 1st technical release date. Because of the Dept. of Housing, I spent 1 week in horrible accommodation. People would go down to the old city office on Kent St for accommodation. Housing would ring to complain about a “non-compliant parolee” who didn’t have somewhere to go, so Housing would call the police and get them to arrest people. Because they couldn’t find housing and housing didn’t help them, Housing just got them arrested so it wouldn’t be their problem. I know people this still happens to.
I was released from jail in the past 10 months. The officer made a free appointment for me the next day with a psychologist. This was not part of the available services, but it was an example of how one person had to work outside of the system to help me get what I needed to get my life back on track. One person who ignored everything and was moving into something new.
The system is just one big gap these days. They look at you as a check sheet. This means you can’t access other things, because you don’t check the right boxes. They look at you on paper, and on paper, I’m the biggest fuckup in existence. I’ve had many chances and burned them all. But this one person ignored that and looked past it to see who I really am, to see something more to me.
75% of my pension goes to rent, that’s the amount NSW deems “reasonable”. $291 was the cut-off amount for rent. My place was $290, then it went up to $300. Housing said “you have to get evicted and move back in” in order to get the rent subsidy. I applied for 74 properties and got none, then finally got this one. Housing said, “you have to be homeless for 6 weeks”; So even though my landlord was willing to send me a eviction notice without actually kicking me out, I actually would need to be kicked out with nowhere to live in order to qualify for the subsidy. Another problem with this is that evictions show up on systems like credit checks and ruin your rental history. This is the shit that piles up on people and makes them unable to get out of bad situations and get their lives back on track. The place where I’m living now is the longest that I have ever lived anywhere since I was a child. I’ve been there for 3 years. And now have a good rental history for the first time in my life.
I was offered a job several times within NSW Health if I could apply, but all of NSW Health has a rule that you can’t work there if you have a substance use conviction, unless you are specifically working in drug and alcohol. This applies even to admin positions where I wouldn’t have any access to medications or anything, so I have no chance of getting work.
In the past year, for the 1st time in almost 20 years, I felt myself giving back to society
It was empowering. But NSW Health felt like yet another government agency that’s written me off. They look at you and your history, they ignore the things they should be looking at, they look at the things they should be ignoring.
I found out that my ex-flatmate got a place in my name without my knowledge, so there was a red flag in the system against me.
The system is designed to stop people improving. They decided what box you fit into…
for me, that’s “scumbag, drug addict, thief”. That’s where they’ll keep me. I’m not allowed to progress out of that box into a useful member of society. I choose not to let them do that to me anymore.
I’m bloody happy now. If a person, group, or government department doesn’t want to help me, then I can do it by myself. I could jump up and down, write letters, make phone calls… but I’ve got better things to do with my time. At the end of the day, I would only end up damaging my health through stress and having anxiety. I value my time now. If somebody wants my time, it has to be a worthwhile reason. It’s a big balancing act, the project has to be worth my time.
When you’re so put upon and discriminated against, you lose sight of your own value to the community. If you’re feeling like this, try to find ONE person who values you. For me it was that prison guard who went outside the system to help me change my life. They might not have any power to help you or change things, although preferably find someone who can help you to take one tiny step.
Shit flows downhill. Dig yourself out, go up above it where decisions get made and change happens. For example, the person at Centrelink in authority. If the person you’re dealing with says “I can’t help you. There’s nothing I can do”, go speak to the manager. People are so afraid if you ask, then you’ll be told no, but you have a 50% chance of getting what you want. And once you learn to speak bureaucrat, throw a bit of law or rights at them, your chances get even better. Through the last 20 years, I’ve never lost my voice.
For anyone who feels alone, isolated or powerless, you’re not. Your voice matters to someone. It might be the receptionist at your doctor’s office, it might be the pharmacist who fills your prescriptions, it might be the person you see each day while you wait for the bus.
Take a risk, speak up, be heard, and believe that you matter. You matter to me.