With rates of HIV rising again, the support and education provided by organisations like the Brigstowe Project is more important than ever.
Photos: The Brigstowe Project
“I was stigmatizing my own self, for being positive. I would pick up a cup at home that I’d been drinking out of, wash it, and put it in the cupboard. But I’d think ‘Oh my god, I need to bleach this cup, someone with HIV had a drink from it’… I would bleach the toilet several times before using it because in my head, someone sat on it who has HIV – but that person was me.”
It’s hard to reconcile this image of someone so isolated and distressed with the charismatic, confident man sitting across from me. Hakeem* is in his thirties and Jamaican-born. He was diagnosed with HIV about eleven years ago, and suffered with his diagnosis alone for two and a half years before accessing specialist HIV support from Bristol charity, the Brigstowe Project. That support proved a lifeline.
Along with the mental distress, poor physical health including spells in hospital had left Hakeem unable to work, which lead to further problems with debt and rent arrears. He was matched with a support worker, who encouraged him to apply temporarily for benefits – something he’d been avoiding, because he didn’t feel comfortable accepting welfare – and soon he could build up his health again, adhere to his medication regime and get back to work.
Within one month of accessing support, Hakeem’s viral load became undetectable, meaning the HIV virus’ level in his blood was minimal and non-transmittable, and it’s stayed that way. Meanwhile, attending the Brigstowe React group, a social group for HIV positive people, helped break down the walls of isolation he had been struggling within which made him “not feel part of society”. It’s why Hakeem now works as a peer mentor at Brigstowe himself.
“I just want to give back so much to people. Everyday I think about newly diagnosed people, the process and how long it can take [to accept]. If me being a peer mentor can help one or two people have a smooth transition, if that makes sense, then it’s worth it.”
Hakeem’s story demonstrates the need for HIV specialist support services like Brigstowe. The charity offers a housing-related support service for 24 people at a time, which matches clients with a support worker. ‘Housing-related support’, explains manager Polly Theedom, is “based on a belief that if you have stable housing you can build on that to increase well being in a myriad of ways”. Some people are nominated for places in supported housing, others just need help to maintain their home, finances and health, perhaps after dealing with the shock of diagnosis and its ramifications.
The charity also has a small specific service for migrants and asylum seekers, and a general advice and information service. A new peer support service, Positive Voices, matches newly diagnosed people with a HIV positive mentor.
Brigstowe was founded in 1995, when Bristol Churches Housing Association (now renamed Places for People) identified a gap in provision for people living with HIV. The circumstances were quite different, remembers Elinor Harris, who was the HIV development worker recruited for the BCHA project at the time of its inception: “People were becoming very ill and often very disabled very quickly, and it was assumed that most people would die in not a great time span.”
Elinor found she struggled with how to deliver the project at first: “I realised it was because I didn’t feel I had a mandate, because there hadn’t been much consultation with people living with HIV.”
They took the project back to the drawing board, asking people what they really needed, and the results were hugely varied. The overarching request was for a small, confidential service – separate from BCHA, the size of which made people feel nervous to disclose their status. They wanted a service which could act as an intermediary between themselves and others, such as landlords, employers, or social services, and that would understand and support people’s HIV-related practical and emotional needs without judgement. The Brigstowe Project was born.
Despite the relentless tragedy that characterised the early years, there were stories which showed that the right support and the right time could turn someone’s situation around. Elinor recalls one client who presented to the organisation as homeless, penniless, very ill and separated from her children. After two years in her supported housing, Brigstowe learned that neighbours had complained that the woman was “supposed to be disabled” but, “I’ve just seen her and her kids zooming past on rollerskates, shrieking at the top of their voices”. Elinor was elated: “For me, that was like, ‘It works, it works!’ – two years ago, she could hardly stand up, never mind roller skate. I thought, ‘She’s free.’”
HIV, then and now
The Brigstowe project has now been running for over 20 years, within a changing landscape of public perception of HIV and government funding for related services. In terms of the former, the currently rising rates of HIV diagnosis have emerged in a context where continued stigma has met a certain complacency.
The AIDS crisis in the eighties and nineties led to publicity campaigns which succeeded in driving the safe sex message home, but no doubt contributed to the horrific discrimination levied at HIV positive people and which persists today. As HIV became known as a long-term health condition that could be managed through medication, everything went comparatively quiet – and rates rose again.
The highest rate of new diagnoses remains in young gay men, where the recent upswing is in part attributed to changes in sexual behaviour facilitated by dating apps and the growing popularity of the drug-and-sex party ‘chemsex’ scene. Surprisingly, the fastest growing demographic is heterosexual people over the age of 50. As a society, it seems, we’re yet to strike the balance between being terrified and being reckless.
Hakeem finds the increasingly popular ‘you can take one pill and be fine’-themed rhetoric misguided, given that the condition can be devastating and the effects of ageing with HIV are still unknown. “I don’t want that message to hit the younger generation,” he says. However, other positive people who recently contributed their testimonies for a Brigstowe project, didn’t feel floored by the diagnosis and felt emphasising the manageability of the condition was important, even immediately disclosing their diagnosis on social media in an effort to tackle stigma head-on.
One client accessing the migrant and asylum seeker service, Betty*, expressed her surprise at the lack of public awareness of HIV she’d seen since arriving in the UK. In her home country, the UN and the Ministry of Health have staged concerted public health campaigns and instigated testing during certain routine hospital visits. Where are the billboards here, she asks, and why is the condition shrouded in silence?
The stigma is particularly entrenched in certain black communities and faith communities, notably evangelical and pentecostal denominations. Hakeem belongs to both the Jamaican and faith communities, and has not disclosed his status to either his family or at church. “Once you disclose, you realise you are segregated,” he says, adding, “I’ve seen what can happen”. He is working with faith leaders behind the scenes to try and break down the barriers, but he says with many, “There’s even a fight to get the conversation going”. He thinks wider societal acceptance and openness with regard to the condition will eventually lead them to “wake up to reality”.
What next for HIV?
The answer to both rising rates of infection and to end the stigma is education, something which Brigstowe and Hakeem as an HIV advocate are keen to expand. They organisation’s been getting “a lot louder”, says Polly Theedom, seeing the need for more activism and public engagement around HIV. The shift occurred after many conversations at the organisation, “about whether we were colluding with some stigma by being that quiet, and actually we could keep the confidentiality and safety of our clients whilst tackling some of the public issues”.
People with HIV still suffer hate crimes and discrimination, whether it’s being fired from a job (HIV is counted as a disability under the Equalities Act, but in less regulated trades this overt discrimination still occurs) or having your status maliciously disclosed to others. One Brigstowe client had people shouting ‘positive whore’ at her house when her status became common knowledge. Now awareness workshops are taking place in prisons, care homes, pubs, housing associations and the universities.
Despite the work yet to be done, in support, education and prevention, Brigstowe has had turbulent times in recent years under austerity. The local authority’s charity funding is decided year by year, making forward planning impossible and the service is under constant threat that next year could see HIV services subsumed into general supported housing budgets.
A threat of having funding cut in 2011 prompted the organisation to employ a solicitor to make a case against the council’s proposals on the basis that they hadn’t completed an adequate Equalities Impact Assessment. The council conceded before the case was heard. The advice and information service also deals with helping people know their rights, negotiate welfare system changes and the housing crisis, and it’s this ‘access to justice’ arm of the organisation which feels the most pressure from the austerity agenda.
Nationwide, a 2016 study from the University of Sunderland, ‘Cutting the ribbon’, found in just the previous year two fifths of HIV organisations had suffered a loss of income, while two thirds experienced greater demand for their services.
Along with the practical and emotional support offered by services like Brigstowe, there is a wider question about public health when it comes to the funding of HIV organisations. With the advent of new prevention treatments – PreP and PEP – and medications available for positive people to maintain ‘undetectable’ viral loads as long their life circumstances allow them to adhere to the regime, it is perfectly possible to imagine a time when new transmissions of HIV could almost completely stop. Eradicating new transmissions is a battle that other countries such as Denmark seem to be winning. “I think if HIV specific services were funded better, we would be seeing that,” says Polly.
But for this to happen, we need to stop being so squeamish about talking about HIV, and sexual health. “What I would love to see society get to is where people can talk about HIV freely,” says Hakeem. “It’s a lot of work to be done, and I’m looking forward to the day, hopefully in my generation, when there’s a cure…But first and foremost is the awareness and the training”.
For now, Brigstowe continues working to get people back on their rollerskates when life knocks them down.
*Names have been changed.
‘Don’t Tell Your Mother’ club night is having a Brigstowe fundraiser night on Saturday 3rd December.
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