The epidemiology of HIV/AIDS in Australia has meant that positive heterosexuals have often felt like a minority within a minority and, with a community response often driven by the gay community, it has not always been easy to get their needs acknowledged and met. Two people who have played a major role in raising awareness of the positive heterosexual perspective have been David Barton, who helped set up PozHets in NSW and Michael Rogerson who helped set up Straight Arrows in Victoria.

Poz het

David Barton seems a remarkably calm and centred person but his story reveals some turbulent times in the past. When he was diagnosed in 1985, his doctor provided no counselling, there was just a curt message from the receptionist: “You’ve come in contact with the virus; come in and see the doctor in three months.”

“I was like a walking ghost during that period,” said David. “I detached myself from all normal relationships, I was completely lacking in any feeling. I could see others on a kind of treadmill and realised I was on it, too. I was using drugs to try to cope with daily life. I was very worried that someone would find out about my status at my workplace. Eventually I told one person at work, a woman I trusted, and we were to become partners and have remained so, ever since. She was the start of my journey back to feeling in control again.

“When I finally decided to seek out a counsellor at the Albion Street Centre in the early nineties, I asked about where my support group was. ‘You’re it’, was the answer. There was still nothing for heterosexuals in 1992. ACON had set up a Positive Women’s group with Vivienne Munro and Kath Vallentine running it. But it looked as if I wanted a support group, I would have to work at setting it up myself.”

In 1993, David established PozHets NSW, which worked as a peer support group until 1996. Attempts to get funding for the organisation remained illusory until 1998 when Inner Sydney Area Health Service responded to a pitch about a series of programs that were put to them for positive heterosexuals and their partners.

“Whether it be handling disclosure, meeting negative partners, learning all the complexities about treatments or just getting your head together after diagnosis, [living well with HIV] involved a level of education and orientation,” David said. “I was helped by the fact that a couple of others in our group had a background in education like I do. We decided to move a step beyond the peer support approach and actually offer a program of learning about being positive.”

PozHets now runs over 36 events a year for their members, often attracting several hundred attendees who may travel from around the state or even from interstate. Events include retreats, workshops and their well-known ‘Open Houses’. “We are conscious that it is often not easy for newly diagnosed people to come to an event where they will be openly declaring their status,” said David. “So we have developed these inclusive monthly social gatherings where partners, family members or friends are welcome. We will often have a theme for the night, such as an African or Asian theme to allow the increasing number of positive people coming from those countries to share something of their culture with us. No one has to know who is positive unless they share that information.”

The organisation has always been for men and women and I asked David whether this has presented any tensions given the reality that some women (and men) might feel angry that they have been infected through sex. “We are sensitive to this issue and have tried to take the emphasis off how people have acquired HIV in the language we use with members and in our publications. We know that some people have got it through injecting drug use, some men from sexual experimentation with other men and so on. It’s not important to dwell on the route of transmission, so we just to refer to everyone as ‘living heterosexually with HIV/AIDS’,” he said.

There was a demand a few years ago for gender-specific groups “where men and women could debrief in their own spaces,” but this changed with the arrival of combination therapy and the improved outlook for people with HIV.

“There has been much more willingness for the women to want to mix with the guys in all aspects of our work. We have had a number of seroconcordant weddings in recent times. That said though, the majority of our members in relationships, have a negative partner and issues around transmission, condom use and pregnancy have been popular topics for workshops,” said David.

What do his members feel about their place in this epidemic, given that the great majority of positive people in the state are gay men?

“Many of the men have experienced homophobia — and the inference that we must secretly be gay — and I suppose there has been a disappointment that organisations like ACON have not helped us to set up earlier in the piece,” he said. “But I don’t hear anti-gay comments at our meetings — indeed we regularly have gay men and women presenting at our workshops and they have a great time!”

David believes the HIV sector needs to change its language. “We are not ‘others’ in the scheme of things. People have to learn to say ‘positive heterosexual’ and not to marginalise us. I was very pleased when ACON first mentioned us as heterosexuals in the mid-nineties — which was a first.”

I left my interview with David with the feeling that life at PozHets was something of a party. They have such an impressive calendar of events — published a year ahead to allow people to lock in their diaries and the activities have an emphasis on having a good time as well as learning. The high numbers that attend attest to the success of this approach and support David’s description of PozHets as the ‘largest HIV peer support organisation in the country.’

Straight arrow

Michael Rogerson set up Straight Arrows in Victoria in 1995 because “the Victorian AIDS Council and PLWHA Vic were not providing specific enough services for our needs and at that time, there were a couple of guys with enough skills to do it.”

Initially Straight Arrows was for men only, as Positive Women Victoria had already been established for several years.

“We struggled to get support at first,” Michael explained. The group was given a small office at Jesuit Social Services in Collingwood, then in an abandoned maternity wing at the Alfred Hospital, before being funded by the Victorian health department to provide peer support for heterosexual men.

Over time, this evolved to include social activities, financial relief, advice and referral to agencies and providing relief from isolation (particularly through a 1800 phone line which takes calls from rural areas and interstate).

“In 1999 there was a growing number of women (both positive and negative) accessing the service through their partners and often they would bring children to our social activities,” Michael said. “So we decided we needed to extend our brief to cover the families of positive heterosexuals. This has lead to our involvement in Camp Seaside where our families go down to the beach for a few days, the children are looked after and the parents have time to socialise and have a break.”

Straight Arrows has had to come to terms with some of the cultural tensions around HIV which exist in some African and Asian communities, where a significant number of new infections have been diagnosed. “We are very lucky to have a staff member who speaks Swahili,” Michael said. “But few people from these communities want to out themselves as positive in any public way. They are very suspicious of government and immigration authorities watching their every move, too. They don’t tend to come to our social events but they will drop in to our office for one-on-one support about HIV issues or we visit them in their homes.”

Another area which Straight Arrows focuses on is prisons. While Michael acknowledged that the privatisation of prisons in Victoria has made a coordinated approach to prisoners with blood-borne viruses difficult, there is an infectious disease clinic at Port Phillip Prison and HIV-positive prisoners from around the state have their appointments facilitated through it. “We have been allowed to provide peer support to the prisoners who are mainly straight,” said Michael. “We’ve also helped to provide prison authorities with an understanding of some of the positive guy’s dietary needs by arranging for an HIV-experienced dietitian to talk to the prison caterer.”

Michael thinks that heterosexuals have a particular problem with the stigma that exists around HIV/AIDS. “For instance a lot of our members won’t go to the Alfred Hospital because they think it is where gay men and injecting drug users go. They often prefer to go to the more anonymous Royal Melbourne Hospital or Monash Medical Centre. They are often resentful that people think that because they have HIV they must be gay or an IDU. A number of our members for instance have become infected having sex overseas, particularly in Asia for men and Africa for women.

“Our members don’t belong to a community like the gay community where most people understand the high risk of catching HIV. For straight men to disclose their HIV status to a new partner is incredibly traumatic, often because there is not the understanding in hetero-land that a straight man might have HIV. Men are usually the ones who ask women out in our society and if the woman is already on contraception it raises questions for the female about why condoms need to be used. Disclosing details about HIV status is one of the major topics we help people through.

*David Menadue* is the President of NAPWA; the views expressed in this article are his own and do not necessarily represent the views of NAPWA.

|_. Positive Heterosexuals| |PozHet (NSW)
1800 812 404| |Straight Arrows (Vic)
1800 027 697
www.straightarrows.org.au | |Positive Women Victoria
03 9276 6918
www.positivewomen.org.au |