Conversations about HIV and being South Asian

By Dan Singh. Dan is the lead facilitator for South Asian HangOuts, a peer support and social group for South Asian gay, bisexual and trans men. Information, stories and anecdotes are based on discussion and feedback for the South Asian HangOuts group.

Empowering each can take many forms in terms of advocacy, being those smaller safe conversations with each other about issues which concern us and through this making our voices be heard. Further to this having South Asian GBT+ men living with HIV on poster and video campaigns, television and cinema gives reassurance for the most isolated in society.

For some people and heterosexual families and friends it can still be a surprise, but yes HIV is a manageable condition. Again, these conversations are important in community and give an opportunity to ask questions that we are too afraid to ask. 

Open conversations

In the past, listening to South Asian GBT+ men’s experiences of living with HIV often evoked feelings of trauma for me, of not been accepted from childhood experiences, education and then internalising this shame, which meant stigma and fear often surfaced. In the current climate there are more open conversations around U=U, PrEP and getting tested regularly. Demystifying certain beliefs and myths that are out there about what is safer sex today, PrEP and living with HIV are still very much needed at a community level, with families, faith leaders and beyond.

We need to take a more detailed look into why are people still living in fear of HIV in communities that may feel excluded from the mainstream. Why is the language used around HIV often negative and is this from our own cultural perspective? Why do we feel judged and who is doing this judging? Why are some South Asian GBT+ men sceptical about PrEP and reluctant to test regularly? How do we reduce shame and stigma? These are questions and conversations we need to continue to have.

Support for South Asian people living with HIV

From my work with South Asian LGBTQIA+ people in sexual health testing and wellbeing support since 2000, there is still a clear and real issue with a large proportion of modern-day families not accepting or understanding sexuality or gender identities. So, disclosing a recently diagnosed HIV status is often a step too far for some of people. Thankfully, having safe spaces to talk in social support groups helps, including Naz Project currently offering a one-to-one peer support, group support, counselling and welfare advocacy across five groups: NAZ Latina, NAZ Africa, NAZ South Asia and NAZ Vidas. Naz also offers PEEPAL their new social peer support group space for people of South Asian heritage living with HIV. We also have, Positively UK who provides peer-led support, advocacy and information to everyone living with HIV to effectively manage any aspect of their diagnosis, care and life with HIV.  I am impressed seeing their ‘LIVING WELL WITH HIV: OUR WORKSHOP’. We also have Positive East who offer a comprehensive and holistic range of HIV support and prevention services. They are also starting a new lunch group for Positive Over 50, a new social and support lunch group for people living with HIV aged 50 and above, running on the first Thursday afternoon of each month.

The above are just few of the projects out there doing some great things. Also, for us South Asian GBT+ men, to see the Me.Him.Us campaign from LGBT HERO was great. Me.Him.Us. was a groundbreaking HIV testing campaign from GMFA - the gay men's health project, created by, led by and starring Black, Asian global majority men. These are the kind of activism and campaigning we need to see more of.

We now have a greater choice where to be tested for HIV, how we are tested and where we want to be treated. However, what about those South Asian GBT+ men who are not out and not accepted by families, culture and religion? Where can they go safely? Home testing is one-way forward, and the test does not need to arrive at your address but to an allocated safe address. You can even pick up these home testing kits and post them back. 

Shame and stigma

Our upbringing and culture (which we love or loved or reframing) that has not supported us well enough can have a negative effect. Yes, there is more acceptance in South Asian families, but we still have a long way to go. The South Asian diaspora is varied and rich. From my own experiences and listening to other South Asian GBT+ men, there is this sometimes-inherent localised village mentality and an inner voice; What will others think, or how will this affect your siblings and this blame culture of respect and pressures to look after our families' heteronormative lives.  Understandably fear of being excluded from culture, religion, family, love and acceptance drives this. This fear then drives us to self-exclude or perform a side to us that is drenched in silence and secrecy, and we carry this shame with us.

Brene Brown, an American researcher has spent two decades studying courage, vulnerability, shame, and empathy. She says: