A place to call my own

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Post by James May20 May 2013

When I found out I was HIV-positive 13 years ago, I left my home in Sydney and spent the next year coming to terms with the virus in San Francisco.

The rental market was twice as expensive as Sydney and I no longer had a network of friends to fall back on. I discovered many people living in what were known as ‘flophouses’ — a last resort in a skyrocketing rental market. I found a place that was gay-owned and operated and offered tiny rooms for US$200 a week. It was share bath and shower with no kitchen facilities.

Most of the residents were gay men and many were living with HIV. Some were clearly disabled by the virus and had shocking deformities from early drug treatments. I was surprised to see PLHIV living in this type of accommodation; however, when I returned to Australia and moved to Melbourne a year later, I noticed similar places popping up all over the city.

I was physically and emotionally frail and felt too vulnerable to disclose my HIV status to anyone, let alone share accommodation with them. I was unemployed and in no position to apply for private rental through a real estate agent, so I had little choice but to try the rooming houses. The first place I called home was like a medieval castle on the outside and a rabbit warren of gloomy rooms with musty carpet and shabby beds on the inside. There was a communal kitchen for up to 50 residents — nigh impossible to prepare nutritious meals without some drongo with a ciggie and a UDL breathing down your neck.

There were two bathrooms with a handful of showers, so very little privacy even when you could get one. The main problem was the residents — mostly men, often aggressive, intimidating and ‘straight’ — though you wouldn’t know it when they staggered home from the pub and gave you a sexy wink. It’s hard to be gay in such a place, let alone HIV-positive. You have to hide it when you’re unwell. You have to put on a brave face and fit in with the boys.

I tried various places around town — often run-down with poor facilities, crook landlords and dodgy residents. I recall one joint above a restaurant. No one was assigned to do the cleaning. The bathroom was caked in mould, the kitchen thick with grease. Some rooms had no ventilation or windows and there were no leases or rent receipts.

They had regular karaoke gigs downstairs and our floors throbbed all night from drunk women singing Cher and Shania Twain songs. Thankfully, Club 80 was just around the corner and offered a welcome respite. The owner of the restaurant sold up one day and we barely had time to leave. I moved to a swanky place above a laundrette where dryers churned day and night and the rooms sweltered like sauna cubicles — without the benefits.

Six years after the diagnosis, I decided I wanted out of rooming houses. I wanted a real home. I was studying full-time and my health was strong. I thought I’d keep my HIV status a secret and try my luck in a sharehouse. It turned to shit pretty quickly. I had a personality clash with one of the housemates. I developed insomnia and chronic fatigue. Our clashes became more hostile.

I lost weight and developed a dry, hacking cough. I stayed with a friend for a short time before getting rushed to emergency with MAC (mycobacterium avium complex) and PJP (pneumocystis juroveci pneumonia).

After being in hospital for a month and climbing the walls to get out, I realised I had nowhere to go. Thankfully, I was given a room in a supported accommodation service through The Alfred Hospital, but there was always pressure to move on. Six months later I was placed in transitional housing and two years after that the Department of Housing offered me a permanent place.

My health improved out of sight with my own space to navigate the challenges of living with HIV.

I finished my uni course, made some good friends and got my life back on track.

Many people living with HIV face similar struggles in their efforts to find safe and affordable housing. According to the 2009 HIV Futures Survey Six, 13.4% of PLHIV were living in public housing and 3.3% were in community housing. Almost a quarter (23%) had changed their accommodation as a result of HIV and 7.9% had experienced less favourable treatment in relation to accommodation. Some 42% said their main source of income was some form of government benefit or pension and the report also found almost a third (31%) were living below the poverty line.

Liz Crock is an HIV Clinical Nurse Consultant with the Royal District Nursing Service (RDNS) in Melbourne. The service works in partnership with the Victorian AIDS Council (VAC) to provide community care and support to PLHIV in their homes. According to Liz, around 95% of their client group lives in some form of public housing. She says there are more and more PLHIV in private rental who can’t afford to stay there. They are on long waiting lists for public housing and are being pushed further and further out to the fringe suburbs, where access to public transport and medical and HIV services is poor.

"We have one client, a refugee and single mother living in private rental. Her pension was recently cut under the government’s new rules for single parents. She has to find work but can barely speak English. She’s still recovering from various comorbidities including TB and HBV-related liver damage, and trying to pay $300-400 a week for a two-bedroom house with three kids."

The staff at RDNS often see PLHIV whose circumstances have changed because of sudden illness. They also see many who are newly diagnosed and very sick; they weren’t even aware of their HIV status because they’d never been tested, says Liz. As well, some PLHIV may have been in paid work, but had fallen ill with an AIDS-defining illness.

"They’ve lost their job and can’t sustain private rental so they wind up in a rooming house or with family who don’t know about their sexuality or HIV status," she adds.

The RDNS also gets referrals through the RDNS Homeless Persons’ Program and visits PLHIV in rooming houses and crisis accommodation services.

Another RDNS caseworker spoke of one client who was hospitalised with an AIDS-defining illness for a month and has now been living in crisis accommodation for six months.

"He needs stable accommodation. His health is deteriorating. It’s hard for us to get access to him and hard for him to take medication. There are many unstable people and a lot of drugs and alcohol in crisis accommodation."

Heather Morgan is the Team Leader of Community Care and Support services at the Positive Living Centre (PLC) in Melbourne and says she meets clients who face a housing crisis all the time.

"Now people are living longer with the virus they are put on regular waiting lists with everyone else in the community. Some people are placed in boarding houses, which can have terrible conditions. We know one guy who went to a boarding house and was bashed. He got out of hospital and was put up in a motel where his things were stolen. Some people are living out of their cars," Heather says.

People feel lost without secure housing, says Heather. Housing is a major safety net that helps people move on in life.

"Once people get a home and feel safe they can get on with other things," she says. "Having privacy makes a big difference."

Deidre Byrne is a Client Care and Support Officer and In-Home Support Caseworker at the PLC. She says she used to see PLHIV in need of housing once or twice a month; now it can be up to three a week.

"Life changes dramatically when people get their own space," Deidre says. "They can finally settle and everything else falls into place."

Housing Plus is the main organisation that staff at the PLC liaise with to find suitable accommodation for clients.

"They are fantastic. They’re transparent and communicate with us regularly," says Deidre. "They’ve provided transitional housing to many of our clients without long delays. They respond to our requests swiftly and consider clients’ needs carefully."

Housing Plus offers statewide assistance to PLHIV to find housing in Victoria. This includes providing information and referral, advocacy in dealing with other agencies, help with making applications and also case management where necessary.

Naomi Gidon is the case manager and says the service is available to all PLHIV who need it.

"We place people on a priority housing list and also get them placed on waiting lists with other housing agencies in the region. We help clients find long-term housing and refer clients onto crisis accommodation services, if need be. We continue to advocate for them until they are given funds for temporary accommodation," she says.

According to Naomi, Housing Plus has been consistently busy in the last twelve months and there is no sign of that letting up.

"The increase in private rental costs is increasing the demand on our services," she says.

Many PLHIV find it hard to find housing because of physical and mental health problems, unemployment and a lack of personal support. Relationship breakdowns can often lead to a person winding up on their own and finding it tough to cover the cost of private rental.

"Some PLHIV don’t feel comfortable sharing because of discrimination and issues around taking medications and side effects," she says.

Naomi says Housing Plus has had a number of successes for some of the most vulnerable people.

I’ve now been living in public housing for five years. I’m very grateful for the space but it’s had its own challenges, such as neighbours with chronic drug, alcohol and mental health issues.

"Their outlook on life and overall health has improved. They have more social contact. They have peace of mind and security. It especially makes a difference for people with kids," she says.

Naomi mostly sees gay men but also some women and families, including people from CALD backgrounds.

"There seems to be more young clients coming through," she says. "We also have older clients who were diagnosed late and are now very sick and experiencing a housing crisis."

Naomi argues there is not enough government funding for housing agencies nor enough community awareness.

"We need to put more policy proposals to the government for more funding. People who are at risk of homelessness are not always visible. More people should be made aware of the situation."

For many of us, living with HIV means that physical and mental health will be compromised at times. Many of us don’t feel comfortable sharing a home with strangers and we can’t always disclose our HIV status without fear of prejudice.

Some people are diagnosed with HIV when they don’t have the financial means to pay for private rental, nor do they have friends or family to fall back on. Some PLHIV are chronically ill and will always find it difficult to cover the cost of private rental.

Living well with HIV requires decent living conditions, which means it has to be low-cost and with adequate facilities so we can care for ourselves. We need space and comfort to deal with the physical and emotional challenges that living with HIV brings. A stable home is the foundation for strong health and a good quality of life. It’s not something we should have to struggle or compete for. It’s a basic human right.

Despite this, my own health and quality of life have reached levels that were unthinkable when I was moving from one rooming house to the next. It’s simply impossible to establish friendships, work and study routines and care for your health in these circumstances. I do hope to leave public housing one day. For me, the next step would be a house with a garden, maybe a partner — or a pet.