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Thursday 10 November 2016

We're more than HIV-positive

Posted in: HIV
By Vaughan Meneses - 19th November 2015

Please don’t ask me if I’m HIV-Positive because I am not a virus.

My name is Vaughan Meneses, I have a partner, a son, a couple of dogs, a cat, a house in a perpetual state of renovation, more external community projects than I care to count, a half-edited novel, a great job and a habit of spending money before I earn it. I’m a Board member of the NZAF and have been involved in HIV related activities since 1986.

My dream is to grow old in our little house and grow lots of veggies and participate in a community garden project to help put food on the tables of local low income families. I plan on standing for the local City Council in next year’s elections and want to help build healthy communities in the wider Porirua area. I like to sing and participate in theatre and like many others already have my Oscar speech ready.

Oh yeah, and I was diagnosed with HIV in 2004 after a random condom-free drunken romp with a stranger in my own bed, so I also happen to be a person living with HIV.

If anyone should have a problem with that last bit it’s me, not you. You will not contract the virus from me, I’m the only one that will have to live with my virus. When I’m dead this little bugger will die with me.

SILENCE = DEATH was one of the most powerful slogans of ACT-UP (AIDS Coalition To Unleash Power) which was the leading HIV activism organisation that lead to better access to treatment and a paradigm shift in the ways that the western world thought about and responded to the AIDS crisis. People were dying, there was uncertainty about how it was transmitted and people lived in fear.

A diagnosis of HIV in 1986 meant that your life would change, others would treat you differently, people would blame you for your lifestyle choices, you became defined by you infection, you were likely to get depression, and then you would get sick and die. The GLBTI community was different because they fought tooth and nail to get access to treatment, they set up support groups and made sure that people with HIV lived and died with dignity.

Fast forward to 2015 and what has changed? Let’s see: my life has changed, others treat me differently, people blame me for my lifestyle choices, people ask me if I’m HIV positive before they even know my name, I get depression, I got sick. Hmmm. I guess I’m not dead yet so that’s something. But now when it comes to People Living with HIV the GLBTI community doesn't really seem to care. They erode our dignity by defining us by the virus, or asking us if we are ‘clean’. They assume that one pill fixes everything.

Not only do PLHIV get to experience all of the fear, stigma, discrimination, depression, isolation and ongoing complications of medication, we now also get to enjoy the bigotry of our own community and we get to live with it for a very, very long time because HIV will not kill us anymore. I will die of something else entirely, probably frustration.

On a global scale 40,000,000 people have already died from the virus. Right now 36,900,000 are living with the virus. Many of them will still die because they don’t get access to the same drugs available to us lucky ones. 1,200,000 people died from AIDS-related causes in 2014.

New Zealand is a magic bubble in terms of the way our epidemic has played out. Many people would be surprised to discover that NZ is a world leader in terms of the prevention of the spread of HIV as we have kept the number of infections low. But no one talks about it anymore and because no one talks about it we no longer have a supportive community for people living with HIV.That may also surprise some people.

HIV is only talked about in the media when there is public outrage or some titillating scandal. For example a young boy being banned from his kindergarten, or a train driver deliberately infecting people up and down the country, or when an out of control celebrity actor with a history of alcohol and drug abuse is forced to come out.

The good old ordinary day-to-day events and bigotry go unnoticed. Probably because as grown ups are not ‘innocent victims’ because most of us got it through sex. We have become ‘unclean’, ‘unworthy’, and the ‘architects of our own demise’ because of our own ‘lifestyle choices’. If we have HIV the chances are we ‘had it coming and probably deserve it’.

It’s sad that many people from our community still actually think that - although many will never admit it. Indeed, lots of us living with the virus believe those same things because we have been told them so many times. Imagine a world like ours where your mistake was being human. We fucked up and didn’t always use condoms 100% of the time. But then again who does? Research shows that the majority of men who have sex with men use condoms about 80% of the time.How many gay men have that sense of relief associated with a near-miss? How many don't even test because they don't want to become one of 'them' - one of 'us'?

HIV is still an issue for our community so let’s start talking about it again. What do your friends think about HIV? What do they know about living with the virus? What are the medications for treatment? What does PrEP mean? What is an undetectable viral load? How do you actually contract HIV? What will prevent you from getting HIV?

As a community the more we talk about it the more supportive our community will become and maybe, just maybe, those of us with HIV may be able to turn to you for support and you will be able to ask questions. We will no longer feel alone and you will no longer be part of the problem. We didn’t ask for this virus. Don’t fear us, don’t judge us.

Given the impact that HIV has had on our community over the last thirty years, what hope do you think we have if we can’t even get our own communities to accept us? This thing is big and the whole world out there needs to do better and we can’t fix it on our own.

Please don’t let your silence be the thing that kills our spirit. SILENCE = DEATH

Vaughan Meneses - 19th November 2015

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