“We have a really big discrepancy in the support that people have available to them when living in a city or urban area compared to somewhere rural. People don’t necessarily have access to travel for support. When we equally pay tax, whether in an urban area or a rural area, we should expect the same standards when it comes to basic things like health and support. There is a prime opportunity in technology to address all of this, but there are very few organisations grabbing hold of modern technology and using it as a way to support their services”. Andrew Goyvaerts is the founder of not-for-profit Positive, Moving On and Positive Hugs, a social support app for people living with HIV. Originally from West Cork, he now lives in Portadown, County Armagh.
Although Positive Hugs received a broadly warm reception upon arrival, Andrew faced questions around the extent to which the app would serve to segregate the community and, by extension, isolate and further stigmatise the HIV positive community. "I see it more as community building. Traditionally, the HIV community has been very displaced over the years – because of stigma – and there hasn't really been much to bring people together", he says.
In speaking with Andrew, it becomes clear that this sense of displacement stems from a prevailing attitude towards HIV as one of, "let's keep this quiet if you have it". Describing such an attitude as "overprotective", he sees it as playing into the hands of stigma and perpetuating prejudgement and asks, "how much are we actually compounding the situation and putting this perception forward that people should be anonymous [in their status] rather than speaking openly about it?"
To illustrate the pervasive and systemic nature of HIV stigma – permeating even healthcare settings – Andrew recounts the time around his own diagnosis: "I had been in hospital a couple of times [for tests] but nobody was getting to the underlying issue. I went back to my G.P and he asked if I would be offended if he suggested I go for a HIV test. I didn’t really think about it at the time but that is stigmatising language – why would or should someone be offended by that, especially coming from a doctor?" He goes on: "After being diagnosed, I was told by my doctor that I didn't have to tell anyone. Another underlying health condition had me in hospital at the time so I told my mother. The following week I was asked if I regretted telling my mother". He is rightly unconvinced that any other health condition would invite such a question.
All of this said, having visited Positive Hugs, I am surprised by the not insignificant number of faceless profiles on the platform and am keen to know how Andrew reconciles this with everything he has just said about anonymity and openness: "What’s trying to be achieved here is not going to be achieved over night or over the course of a couple of years. My hope is that in the future people will feel confident enough to put their picture up". For sure, it may be a big deal for a person to sign up in the first place. This takes on added meaning given Positive Hugs' international scope, with many users existing in far more regressive regimes. Andrew points to a particular case in China, in which a HIV positive eight-year-old was the subject of a letter signed by 200 residents – including the boy's own grandfather – who demanded he leave his village on account of his status to demonstrate this.
Back in Ireland, I am keen to gain more insight into the reality of life on the ground for someone living with HIV. In particular, I am interested in the differences between the North and South of Ireland, given Andrew's experience of both. And there are differences: "Religion has hung on up in the North for much longer than it has down here – that is definitely a factor [in terms of attitudes]. From an organisational perspective, what with the collapse of Stormont, we now have no government to go to, we have no health budget. We also had that issue the year before last where the DUP kept resigning their seats for whatever issue they had at that time". Put plainly, trying to make progress around HIV in the North is proving hugely difficult, be that in terms of attitudes or policy. The same can be said for issues intimately connected to HIV such as responses to chemsex or drug liberalisation.
Returning to Positive Hugs, conversation inevitably turns to similar geo-social apps. Are Grindr et al. doing enough to address HIV? "I think they're doing a good job at showing that they’re trying", Andrew replies, tellingly. Arguably, real change needs to happen at the level of the user. Drawing on his own experience of the app, he highlights the lengths that the community still needs to travel. Putting it mildly, he says, “somebody can have a real go at you about having HIV and before you get the chance to do anything for proof of that they block you and that message is gone". This example, borne out of an absence of effective checks and balances, is not surprising, as the use of the offensive and anachronistic framing of one's negative status as 'clean' persists across profiles. Andrew goes on to wonder aloud how much structural change in these apps is sincere, how much is for show and how much they really give back to the community, particularly when many charge monthly fees.
Turning to what good allyship looks like, Andrew looks first at the role of organisations: "Collaboration. I have never seen such competition as what I have since entering the charity sector. Organisations are there to benefit the community and there has to be a point where they put competition aside and work together for the people they are actually mandated to represent". On that note, Andrew is developing Positive Now's website to allow organisations [who may not have a budget to pay for developers] provide online peer support through Positive, Moving On for free. At an individual level, empathy and an open mind are needed the most: "While some of us might not experience too much stigma in our day-to-day lives, a lot of people do. What I perceive as being not very stigmatising could very well be to somebody else. We need to understand that. It does good to stand back and be mindful of the perspectives of other people".