The Stigma of Being HIV+

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Oliver Hall speaks to HIV+ New Zealanders and the heads of our leading HIV support services to learn about modern HIV stigma and how it can be overcome.

The theme of this year’s World AIDS Day (WAD) on 1 December is HIV Stigma. “HIV stigma is one of the most devastating parts of the virus,” say the New Zealand AIDS Foundation’s Executive Director Shaun Robinson.

“There are no medications that can ease the effects of social isolation, or being avoided by family or friends or treated as someone to be feared. The impact of depression on self-esteem can affect how people look after themselves; it can make people avoid testing for HIV as they would rather not know their status. The best way to combat stigma is to show people as people, not defined by the virus.”

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Bruce Kilmister – CEO of HIV support group Body Positive, welcome’s this year’s WAD theme, because the stigma of having HIV has not improved in recent years.                 

“I measure this by today’s newly diagnosed young men. They seriously hide their HIV status and do not disclose to friends for fear of rejection and ridicule,” he tells us.

Positive Women’s National Coordinator Jane Bruning says HIV related stigma is a very obscure phenomenon.

“Rather than getting better or worse, it has changed. Most people know you can’t get HIV from hugging or touching… many people nowadays know someone who has HIV and are accepting, yet ask people how many of them would like to be in a sexual relationship with someone who has HIV and they won’t be so accepting. HIV related stigma is still around and is still just as challenging and hurtful for those who experience it as it ever was.”

HIV related stigma takes many forms. Wellingtonian Lance Kedzlie has been positive for 14 years. He believes the most import issue is positive people self-stigmatizing.

“We feel guilty, we feel dirty; there’s this whole horrible issue about being openly HIV positive and feeling stigmatized by our own community.

” He tells us, adding: “just look at the local dating sites to see the stigma out there. People questioning if you have any other STI’s by asking if you are clean or unclean… It’s a horrible label.” Kilmister too, notes ‘casual jokes’ and ‘put downs’ as equally damaging expressions of stigmas that exist in our community and lead back to positive people labeling themselves the same way.

Recent research presented by Auckland-based social worker Susan Mundt concluded that nearly half (47%) of the 213 positive people she surveyed in NZ, reported experiencing discrimination in the healthcare system due to their HIV status.

Bruning and Kedzlie both concur, and gave us examples of insensitive treatment they had experienced within the medical practice. “I have had a health professional drop what they were holding and physically withdraw from me when I suggested she might want to wear some gloves before she took my blood as I have HIV,” says Bruning.

“I choose to have some elective surgery done recently at a private hospital in Wellington,” Kedzlie tells us. “I had a big HIV sticker slapped around my arm for people to see as I was transported around the hospital. It made me feel like a complete leper.”

Even more disturbing are reports of discrimination due to HIV stigma in the workplace. Jewel Grimshaw, now in her thirties, contracted HIV at age 17. She describes to us a time she was offered a job and disclosed her status to her employer in case she involved in an accident at work. “I was later told that the board had decided that I could no longer be offered the job because I was HIV+.” She says she later took the company to the Human Rights Commission, who ruled in her favour.

Everybody express spoke to drew the same conclusion that the only way to improve HIV stigma in NZ is through education.

“It still distresses me today to hear people ask what it means to be HIV and can they contract it from a coffee cup. People are very naïve. More conversation needs to be had,” says Kedzlie.

“More about the disease needs to be taught in schools.” Agrees Grimshaw, “Heterosexuals don’t think it’s going to happen to them.”

“One of the most powerful tools I have witnessed in HIV destigmatisation is by people living with HIV, putting a face to it and speaking as educators,” Bruning tells us. “Once HIV is personalised it is not so scary.”

For those who are suffering from the affects of HIV stigma, the recommendations from those who have experienced the same, was again unanimous. As Kedzlie puts it, “Don’t sit there on your own. There are organisations and people out there that will love and support you through this process… Never be frightened to go out and ask for some support because it’s there.”

If you would like to volunteer to help with bucket collecting this World AIDS Day, sign up here!

 Article | Oliver Hall. Photo | Official opening of Rose House (Positive Women premises). Attended by Helen Clark, Michel Sidebe, Executive Director of UNAIDS. Positive Women Inc. Judith Acryod (Left), Jane Bruning (Centre) Suzie Morrison (Right).

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