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Meet the Brighton faces of HIV, fighting to dispel its stigma
5:12pm Monday 24th February 2014 in News
Rachel was 40 when she was diagnosed with HIV. She was recently separated from her partner of 20 years and had teenage children.
When she was diagnosed HIV positive eight years ago she said it was “like running into a brick wall”.
She never thought she could have HIV. She was terrified, ashamed and suffered panic attacks.
As a heterosexual, middle-aged woman, Rachel does not fit any common misconceptions or stereotypes about HIV sufferers.
She is just one of 30 people who are speaking out in an attempt to demonstrate that HIV is an illness that does not discriminate against age or sexuality.
The subjects of the Stand Tall – Get Snapped exhibition range from 22 to 79 years old. They are gay, straight, old, young, black and white. Some manage their conditions with just two pills a day – some take more than 40.
But they have all suffered some kind of stigma after being diagnosed with the disease.
For the 30 subjects who photographer Edo Zollo managed to convince to pose for his frank photographs, hundreds more refused.
Even of those brave enough to stand in front of the camera lens, and the world, as being HIV positive to highlight the continuing discrimination against people with the disease, two have since regretted their decision after facing a backlash.
Mikey, 24, had been HIV positive for two years. He died before the exhibition began – but his family have allowed Mr Zollo to continue to use his image and carry out Mikey’s wish to raise awareness.
Mr Zollo was inspired to complete the project after being exposed to the HIV virus and having to take post-exposure prophylaxis medicines. Whilst suffering the side effects of the drugs he started to think about how his life would change if he was HIV positive.
He said: “Through those 28 days I thought about the impact on my family and friends and about the massive stigma.
“Of the 30 people involved the youngest was 22, the oldest 79. One had only been diagnosed three months before, another had been HIV positive 28 years.
“It was quite a difficult thing for them to do. It was quite different for each of them – for the younger ones it was more about telling their friends on Facebook and social media and for older ones it was more if they had children or elderly family.
“I explained to them very clearly what was going to happen and they signed a disclosure form saying they understood what I was doing.
“One guy decided to do the project and invited his family to the exhibition without telling them he had HIV. They found out that way.
“A couple of the others found that afterwards they faced a backlash for taking part – which shows exactly why we need to dispel this stigma.”
Mr Zollo asked the charity Sussex Beacon to help him find people to take part and the Brighton-based centre which cares for people with HIV is supporting the exhibition which launches at Brighton Dome today.
Brighton and Hove has the highest proportion of people living with HIV outside London.
Elly Hargreave from Sussex Beacon said the charity is immensely proud of the project and its efforts to dispel myths about HIV.
She said: “It is a very unusual and unique project. It is the first time there has been a collection of people from all over the country.
“It is very brave. The reality is depending on the age of your children and whether you have still got older family the stigma is very much still there.
“It is a widely held misconception that this is a predominantly gay disease, but that is very much not the case. In fact it affects roughly 50% heterosexuals.
“It is also no longer a certain death sentence, but it is a condition where people respond very differently to the treatment. One person may only have to take one or two tablets a day, another 46 tablets.
“It is a daily reminder because you have to take that daily medication to keep you well. It can have very serious effects on mental health as well.
“It has been 30 years and we have discovered some very good treatments. But there has become complacency. Particularly older heterosexual people don’t think about HIV, don’t realise they should have regular tests.
“More and more we are seeing people from across such a broad range of social demographics.
“There is still a stigma about HIV and we need to have more open discussion about sex.”