HIV Australia | Vol. 9 No. 2 | July 2011

JAMES MAY speaks with three HIV-positive people from culturally and linguistically diverse (CALD) backgrounds about their countries of origin, their HIV status and their experience of HIV service providers in Australia.

Emily

Emily came to Australia from Zimbabwe in 2009 on a student visa. She now studies social work in Melbourne and has been given permanent residency. She says that Australian citizenship was not difficult to obtain, despite her HIV status. Emily wanted to come to Australia to find a better life and the chance to build a career. She now has a partner and a daughter as well as two siblings in Melbourne.

Living with HIV in Zimbabwe is very challenging, according to Emily. Most people have no access to medication, while some only have access to basic treatment which cannot be tailored to suit the individual. Many people don’t have access to clean water or good nutrition, especially in the rural areas where Emily is from. Also, there are very few HIV services available across Zimbabwe, aside from a few non-government organisations (NGOs) that are not equipped to deal with the scale of the problem.

Emily says many people in Zimbabwe still lack basic education about what HIV is and how it’s transmitted. As a result, there is a great deal of stigma and prejudice about HIV and AIDS. ‘It’s rarely spoken about unless it affects you personally, and there’s a lot of fear and shame. [If you are HIV-positive] people think you’re promiscuous.’

Emily had no idea what her HIV diagnosis meant in the beginning. It was only when she came to Australia and met her current partner that she disclosed her status and made contact with medical services. Her CD4 count was then deemed to be low enough to commence antiretroviral therapy.

Emily says that keeping busy and active in the community takes the focus away from her health – although there have been times when she felt in need of support. That led her to contact Positive Women Victoria. She says it’s been a big help to discuss things with other women who understand what she’s going through. Emily says she also gained a lot of strength from her experience in Zimbabwe where she saw many people sick and dying. ‘It drove me to keep going,’ she says.

Emily hopes to play a role in HIV service provision in Africa one day. She says the virus has hit women and children the hardest. ‘Women in Zimbabwe have very little power and are resigned to life at home. They often have no idea they’re carrying the virus because they’re infected by men who won’t disclose their status or seek treatment.’

Wei

Wei Zhang is a Chinese artist. He came to Australia from Shanghai in 1996 and found out he was HIV positive in 2000. He says it’s very hard to be openly gay in China and he wanted to travel abroad to see what it was like to live in a democracy.

According to Wei, there’s a lot of pressure to marry in China and he’s never told his parents about his sexuality. ‘They still tell me there’s time to marry when I visit them.’ Wei was able to secure permanent residency as a political refugee and also as an HIV-positive gay man.

Although Wei doesn’t spend a great deal of time in China anymore he understands that people are talking a lot more openly about HIV/AIDS these days. He believes that condoms and HIV treatments are now more widely available and that Chinese governments will actually subsidise antiviral therapy in some cases.

Wei says he did not trust HIV treatments for a long time because of the side effects he witnessed in others, although he is now taking combination therapy. He lived in Sydney for a long time and did not feel adequately supported by some HIV services there, but he now has a great support network at the Positive Living Centre (PLC) in Melbourne. He attends a peer support group where he can share his experience with other HIV-positive men and he can also access meals and exercise groups. ‘It feels like a second home,’ he says.

In addition to being HIV-positive, Wei is also living with hepatitis C. He underwent antiviral therapy to eradicate the hepatitis C virus and says it was extremely debilitating and caused severe side effects such as depression, fatigue and low motivation. The virus was cleared after twelve months but it reappeared on blood tests seven months later. He is now considering his options.

Wei says his English was quite poor when he arrived in Australia and it was a barrier to learning more about his HIV and hepatitis C status. He’d like to see more language-specific material made available in HIV support services, although he says that people who work in the sector do a very good job. ‘It’s the individual’s responsibility to learn English but more language-specific information could assist with HIV prevention,’ he says.

Wei says he feels very fortunate to be HIV-positive in Australia, where there is good access to medication, support and information. ‘I can’t imagine how hard it must be in China.’

Kathy

Kathy is an eighteen year old student from Papua New Guinea (PNG). She now lives in Victoria with her parents. She was diagnosed HIV-positive when she was fifteen and was seriously ill at the time. Kathy is still struggling to come to terms with her HIV status and says it occupies her mind a lot. She was very angry and scared when she found out and her parents were sick with worry. ‘I had no idea there was medicine. I just thought I was gonna die.’ Kathy says it still causes her a great deal of anxiety and she has been suicidal at times. She also says that she was very annoyed with her doctor for informing her parents about her HIV status without her consent.

Kathy would love to have her own family one day and she’d prefer to have got HIV I thought this wouldn’t be possible.’ She finds it very difficult to disclose her HIV status to friends or potential partners. ‘Guys my age are too immature,’ she says. Although many people are HIV-positive in PNG, Kathy says there is little education and people tend to gossip about private matters. ‘If people knew I had HIV they wouldn’t sit near me. They’d think I was sleeping around,’ she says. ‘No one discloses their HIV status in PNG. They don’t care about others.’

Kathy started antiretroviral therapy three months ago and although it’s working she hates the thought of taking pills every day for the rest of her life. While her current medical service is adequate, Kathy says she didn’t feel cared for when she began attending a major hospital service in Victoria.

She also says that counselling has not improved her emotional wellbeing. ‘They just tell me things I already know. It doesn’t help. Sometimes I feel sick from thinking so much.’ She prefers talking to people who are living with HIV as they understand her experience and she has found some good mentors through Positive Women Victoria. However, as a young woman, she doesn’t feel comfortable with other HIV services that are predominantly used by gay men.

Kathy is glad to be living in Australia. ‘Women have more freedom here. They’re stuck at home in PNG and there’s a lot of violence against women.’ She hopes to do a photography course at TAFE and would love to work in the media as a photographer one day.

Summary

Some people from CALD backgrounds wish to come to Australia to take control of their health, build careers and find a better life – and perhaps contribute to the health and wellbeing of HIV-positive people in their countries of origin. Living with HIV in many countries is still tough due to widespread poverty, poor sanitation, lack of access to HIV services and medication, as well as poor education. The participants in these interviews each had vivid recollections of HIV positive people from their home countries being gravely ill and dying in recent years.

A lack of education, cultural beliefs and gender inequality means that stigma and discrimination is deeply entrenched. People don’t understand what the HIV virus means or how it’s transmitted. There is a lack of open communication about sex and safe sex messages, leaving people vulnerable to infection. Women are particularly at risk and HIV-positive women are viewed as ‘promiscuous’, according to the women I spoke with.

Support groups are important for people from CALD backgrounds. The respondents take solace in the company of other people living with HIV who share their experience. However, it is essential that more women-specific groups are made available, as women do not always feel comfortable attending HIV services that are predominantly used by gay men.

While the participants agree that effective information and diverse staff representation is widely available in the HIV sector, there were examples  where people felt unsupported by particular services. Perhaps this is due to an inability of some staff to engage effectively with CALD groups. A knowledge of basic English makes it easier to navigate these services while poor language skills can be a barrier to understanding one’s HIV and hepatitis C status and related issues around treatment access and adherence.

All respondents are very pleased to be living with HIV in Australia. This is largely due to the availability of better treatment, care and support. They would also be at a greater risk of stigma and discrimination in their countries of origin due to the ignorance surrounding the virus. The people I spoke to recall the suffering of people living with HIV in their birth countries with deep sorrow. As HIV-positive citizens of Australia, they now have a renewed sense of freedom and power over their future.

James May is a writer of short fiction, theatre and freelance journalism. His work has been published in various magazines and anthologies.

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