'Male voices still shout the loudest' - Edinburgh woman tells of life with HIV

Edinburgh-based academic and chair of HIV Scotland Dr Nicoletta Policek has told of her experience as a woman living with HIV to mark World AIDS Day on December 1.

The discourse around living with HIV in Scotland is dominated by male voices, Dr Policek said, as well as other voices which are “good-looking”.

"It’s very difficult for those who are homeless or migrants, or less pretty communities, they are not as well represented,” she said, adding that there are many people living with HIV who are not acknowledged in the public eye.

“It is still male voices which shout the loudest, as much as we have achieved incredible milestones, there is still quite a lot of work to do,” she said.

Dr Nicoletta Policek has lived with HIV almost all her adult life.

Dr Policek, now in her fifties, has lived with HIV almost her entire adult life. She migrated to Edinburgh to study criminology in the 1990s.

“If I introduce myself as a professor you will have a different interaction with me than if I introduce myself as an Italian migrant who came to Scotland and has been living with HIV for almost all her adult life… as humans we put people into different boxes,” she said.

“A professor is worth much more than a woman living with HIV. Who would you want to invite to a party, someone who is a professor or someone with HIV?"

Dr Policek said she still experiences stigma associated with living with HIV, and that it has become "slightly more subtle and much more detrimental” since the 1980s.

Dr Nicoletta Policek.

“Medical treatment has allowed us to live a longer and much healthier life by all means, but there are still those preconceived ideas about prejudging who we are, and that’s much more subtle. Before there was a sense of ‘let’s help those AIDS victims because they are dying’, it was almost an exercise in empathy,” she said.

“Talking from personal experience, before there was a sense that we had to do something because we were alone. In the 80s we didn’t know what it was, there was a big force of despair and fear that motivated us.

“Now, paradoxically, there is a kind of HIV fatigue [...] the white, middle class, good-looking, younger person is still ok, but the communities of homeless people, those at the margins of society, are much more disenfranchised now than they were before because there is no one who is willing to advocate on their behalf.”

Dr Policek added that those with HIV often face a “language of stigma”, with people asking how they became infected.

"I wonder whether those admitted into hospital because of Covid-19 infection are ever asked ‘how did you get it?’ and faced with the indignant subtext which reads: it was your fault because you did not wear a protective mask,” she said.

"Would it not be similar to thinking you contracted HIV because you didn’t wear condoms or didn’t have access to clean injecting equipment?”

There is hope for HIV-related stigma to reduce in future, said Dr Policek.

"It seems to me that Scotland is open to embracing radical changes and HIV could be the opportunity to look at communities which are under-represented or not represented at all.”

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