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Scene Magazine - June 2021 | WWW.GSCENE.COM
TEAM WORK
Lunch Positive founder Gary Pargeter talks to Jaq Bayles about the continuing battle to remove the stigma around HIV, and the way forward as lockdown restrictions lift
Despite the horror myths around HIV having been long debunked, there remains a fear for many that revealing a positive diagnosis will prompt negative reactions, even among close friends and even within the LGBTQ+ community.
As Lunch Positive, the peer-led voluntary HIV support organisation, prepared to reopen fully following the harsh lockdown months, founder Gary Pargeter was looking forward to seeing people once again sitting down to shared meals at Dorset Gardens Methodist Church and reiterated the importance of having a safe space for those diagnosed with HIV.
Brighton & Hove is at the forefront of the drive to meet the national target of ending new cases of HIV by 2030, but while that target looks eminently attainable, wiping out the stigma and prejudice around HIV is another matter.
The fear – whether real or imagined – of facing prejudice after getting an HIV+ diagnosis is problematic for many. “It definitely still happens,” says Gary. “People are sometimes really fearful that others are going to react in negative and unhelpful ways, and very often those fears are based around a sense of social or relationship rejection and a lack of acceptance within the community, and that people who previously have felt comfortable with them might not do so any more.”
Gary Pargeter
Against a backdrop of increasing fluidity and diversity around “identities and our ability to define who we are”, there are still many people who are unable to relate to anything that is outside their own sphere of experiences, and this is one of the traits Gary believes is perceived as holding back acceptance.
“[There is a fear] you might suddenly find yourself with people who you felt might be understanding and insightful and supportive, and who you reach out to for all those things, but they are not accustomed to thinking beyond what they already know and there’s an immediate sense of rejection, powerlessness and often hopelessness. “
Which is why a peer-led environment is such a successful tool in helping people come to terms with a diagnosis.
“It’s not just a diagnosis, not just a disease, it’s many, many things,” says Gary, who regularly hears from service users that just by virtue of being with other positive people in a safe but structured environment they feel their spirits lifted. “People come along and see first hand that people can be HIV+ and have many other identities and characteristics, can also be happy and able to socialise and talk with new people and also can appear to be well and coping and living life happily.
“It’s all about acclimatising yourself and meeting and interacting with other people, which doesn’t easily necessarily happen in pubs or environments where there’s another purpose for being there.”
In common with some other targets of prejudice, HIV is not necessarily visible, so prejudice could be avoided by not ‘coming out’ – but of course that in itself comes with issues.
Gary gives an example of a volunteer working with Lunch Positive over the summer, who was “relatively comfortable” about a fairly recent HIV diagnosis. “They just came along, didn’t really talk about it, but then had the opportunity in their private life to talk about volunteering for us and had to make that decision about whether they told somebody they were volunteering for an HIV organisation.
“That then provoked the thought ‘why am I even considering whether it’s important to mention this or not?’
“It took some thought as to what the reaction would be, but the outcome was entirely positive and led to them talking to their friends for the first time about their own HIV diagnosis. They now say they are feeling much more fulfilled and liberated as a result. There are all those knock-on incremental benefits.”
As the government’s ‘roadmap’ out of lockdown unfolds, the importance of grassroots organisations like Lunch Positive is likely to become even more evident, with many people traumatised by the events of the past 15 months and reluctant to re-enter without support a society from which they’ve been cut off.
“People come along and see first hand that people can be HIV+ and have many other identities and characteristics, can also be happy and able to socialise and talk with new people and also can appear to be well and coping and living life happily”
“The biggest focus is just re-engaging with people who have become more isolated than they were before,” says Gary. “I know it’s going to be a really long haul venturing out and certainly to become part of friendship groups again.”
Playing a vital role here is likely to be the befriending scheme for people living with HIV in Brighton & Hove that was set up by Lunch Positive with charity Together Co in April. The scheme had been in the pipeline since 2019 but was interrupted by the onset of the pandemic.
Later, the need for such a service became driven by the pandemic and going forward it will be needed more than ever, especially in more rural areas as, while cities can be isolating, social opportunities tend to diminish the further away from them you go.
“So many people have shown interest who live in surrounding areas and are very fearful of talking about their HIV status and making friends, even within their own peer groups,” says Gary.
And if there’s been any kind of positive to the pandemic, it’s been the strengthening of ties between voluntary organisations and the people they support.
“It’s given us opportunities. We’ve engaged with more people over the last year through the Lawson Unit HIV clinic, for example, and because of that have stronger links with the community. That represents opportunities to grow our work and reach people in more ways than before. It’s a silver lining I suppose.”
