Being positive about being positive

Often when we talk about HIV today we forget that for many people and communities, stigma is real. It’s still affecting people and their communities. Moreover, stigma is a tricky little beast; good at hiding.

Throughout the many years that we’ve been challenging these acts of disability-related hate crimes, it seems that many people have not been educated or exposed to the 21st century facts about living with HIV.

This is where stigma gets its mojo – when people perpetrate unkind acts that negatively affect others.

The global management of HIV is one reason people have told me why they haven’t felt able to take a test to find out their status. Their fear of a positive diagnosis, even within the UK where we have the Equalities Act and a strong evidence-based community, stems from personal fear.

Among the many labels out there, we now have another label for people –‘undetectable’. But for me, positive is positive and I ignore the medical narratives of infectious and undetectable.

Labels don’t help anyone manage the challenges of living with HIV – the label fuels the stigma. So, my view is that I’m being positive about being positive.

Too many of our brothers and sisters have poor health as well as psychological and mental ill-health issues related to that stigma.

Stigma is real and tangible to many of us, and I’m fed up with people feeding stigma with its trite treats of denial and apathy. Saying “times have changed” is a main course to stigma.

Walk in my shoes for a day and you would see things haven’t really changed. Intersectionality, the overlapping of discrimination, has an unpleasantly close relationship with HIV.

You could serve a smor- gasbord of HIV + poverty + BME + women + LGBTQ + groups that are so under the radar they are barely mentioned by the system.  These groups are stigmatised and living with stigma on a daily basis.

How can we really make a difference? It’s been over 30 years since the epidemic started affecting so many communities. I want to say to the world that we need to eradicate stigma with kindness and openness.

To mark last year’s World AIDS Day 2016, I set out to take steps towards reaching this goal. I went to Trafalgar Square to ask strangers to give me a hug with the tantalising invitation ‘Hug me, I’m HIV positive.’

I truly believe what a real grass-roots activist once told me – “Stigma kills, not the virus.” The late Elizabeth Taylor said, “It’s bad enough people are dying of AIDS, but nobody should die of ignorance.”

That’s why I’m positive about being positive. Maybe the global route won’t reach enough people so we need to make this battle against stigma and ignorance personal. So let’s tackle it, one person at a time, and leave a very nasty taste in stigma’s mouth by spreading knowledge, experience, hope and hugs.

This year has been all about supporting people to access the facts about HIV, to break the myths, and on Saturday December 2nd my Forest Gate Pride Committee took part in a community initiative to do just that and also to share a few hugs.

 

Isaac Samuels, member of Think Local Act Personal’s National Co-production Advisory Group (NCAG)

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