Today, as part of the #DisableTheLabel campaign, we are launching “Faces of Disability”: a series of guest blogs written by our students to provide visibility to the broad range of disabilities.
In today’s society, disability still carries a huge amount of stigma. HIV carries an arguably even higher amount of stigma. Following last week’s world HIV day, and Saturday’s International Day of Persons with Disabilities, our LGBT+ Officer Tiarnán Heaney writes about how much of this stigma prevails in our society. Not only do we have to fight for access to healthcare, but we also have to #DisableTheLabel surrounding HIV. The blog also features an anonymous submission from a HIV+ person about the shame and isolation directed towards once diagnosed.
Dear guys, gals, and non-binary pals,
We all know that word, quite a substantial number of people use it, it permeates our everyday language and has become quite a familiar concept to us. It is then dumbfounding, that in this day and age, elected politicians can walk the hallways of power, with as much biological knowledge as a primary school child and perpetuate this stigma. The stigma that polarises and victimises individuals living with HIV is thriving in our society; with no community unaffected by its warped hatred.
The misinformation and calculated campaign of hatred and homophobia that has infiltrated and putrefied our society since the 1980’s, still rears its ugly head today. Myths about the causes of HIV and AIDs echoes down through the decades, perpetuated by mainstream society; in our education, politics and even in our media. I would argue that this has led to the internalisation of the stigma of HIV by the LGBT+ Community, degrading and shaming our people. I dare say that if I began to stop people on the streets and ask them what they know about HIV, it wouldn’t be long until I got responses like “some people can’t keep their legs closed”, and “drug addicts or heroin addicts with their needles get HIV”. As a society, we have the phenomenal capacity to blame the victim for something that is beyond their control. We stigmatise them, ignore them and joke about them.
The stigma in our society affects us all, myself included. Before I began to educate myself on HIV in our society, I believed myself to be a progressive; open to all people, non-prejudiced and educated enough not to be affected by this internalised stigma. I thought, “Oh I give to charities – I wear my red ribbon – It will never affect me anyway – I’m doing all I can do – it’s not really my problem.” How wrong I was.
I am 21 years of age; I have been exposed to HIV, and the stigma embodied itself in my subsequent cruel and despicable actions.
The best way to describe it is utter panic; your friends tell you everything will be ok, that you’re probably just over reacting, and that you’ll be fine. You hear what they are saying, but you do not even listen.
I did not contract HIV, and I remain HIV Negative; yet the stigma and misinformation that surrounds the virus drowned me beneath an ocean of panic, desperation and utter helplessness.
What ensued, as a result of selfishness and the effect of the stigma, was a rollercoaster of emotions that threatened to de-rail at any moment. At first I felt like the world disappeared under my feet, free falling into an abyss. I felt nothing. Then the cold hand of panic gripped me. A flurry of phone calls ensued, picking up the phone, ringing the GUM, put on hold, I hang up. This happened a few times, with a mind that had been shattered by fatigue and shock. I attempted of course to pick up the shattered pieces in a panic, dropping pieces as I gathered them, cutting myself on my own thoughts, stepping on pieces and grinding them to dust. The more I attempted to take control, the worse it got. Eventually I stayed on the phone long enough to get an appointment, and I put down the phone. Then the anger roared.
I was furious at the individual; “how dare they do this to me?!” was my mantra. Whilst I could not see it at the time, this was perhaps the darkest moment of my life. In a rage that unlocked the embedded stigma, I blamed the victim in all this. That somehow it was completely their fault, that I was now paying for their mistakes. I was so wrong. I had allowed myself to be chained and ruled by the stigma, I became a product of it, and aided in its perpetuation.
As unlikely as it is that the individual in question is reading this I would like to say I am sorry for how I reacted, and how I victimised you.
Due to misinformation, poor education on sexual health coupled with my own blind ignorance, I could not be reasoned with, or calmed, despite the fact that scientifically, the risk of transmission to me was virtually zero. The viral load of the individual, (that is the level of HIV in their blood), was undetectable due to regular dosages of antiretroviral medication; meaning that the chance of transmission from a positive to negative individual was close to zero.
There are many people out there that are like me in this story who are ignorant of the fact that the stigma of HIV affects them, lying dormant in their minds. I was never really at any risk, yet the effect of my own ignorance led me to act in a way in which I degraded another human being.
I leave you with this thought. If ever someone tells you that they are HIV Positive, be it a partner, friend, child, relative or even parent- do not become the bad guy and blame the victim as I did. If someone opens their heart to you, and tells you that they are HIV Positive, in this society of stigma, it tells you one important thing about that individual. It tells you that this human being trusts. They place themselves at your feet to do as you will; it takes tremendous courage to tell anyone that; to risk all and confront the dormant stigma in us all.
Depending on who you are to that person, your reaction will of course be framed differently; and within this everyone will have a range of responses. But remember one thing. This is the same person you knew before. They are no more and no less than that- show love and compassion. Hug them, cry with them, laugh with them and never, ever, let the stigma win.
We have a capacity to show love; it’s time we started showing it. Let’s call out the stigma.
As LGBT+ people, the majority of us have experienced shame, isolation and stigma in the past – be it a warped view of ourselves spurred on by societal pressures or negative reactions to our sexuality from other people.
Some of us were fortunate enough to receive love and acceptance when we accepted this part of ourselves, but many of us experienced profound shame, isolation and stigma. We would hope that within the LGBT+ community, we would not subject each other to the same pain inflicted upon us in the wider world. HIV is still discussed with fear and panic, and for HIV+ LGBT+ men and women, the isolation they feel and the stigma they are exposed to can be compounded enormously. In Northern Ireland especially, the level of detachment and view of HIV as an alien concern is staggering – ultimately leading to skyrocketing infection rates as people either don’t get tested, or can’t face the stigma of telling a partner they are HIV+. The tragic legacy of the AIDS crisis and its place in our collective psyche can cause a knee jerk reaction in many people, especially if they aren’t part of the LGBT+ community.
I myself have been guilty of that prejudice – AIDS was so closely associated with gay men, and it was presented as my primary concern for many of those I had confided in after coming out. After leaving NI, however, I was surprised and impressed by the openness of many of those who were HIV+, and there was a greater culture of education and acceptance – it was difficult to reconcile this with the confusion and fear that had dominated conversation back home. Admittedly, non-NI government initiatives have helped spread awareness, and the systemic homophobia in the NI political system (recent DUP-related incidents need not be repeated) has relegated HIV to a ‘gay disease’ and therefore not a priority – so we need to work even harder to educate each other.
The creation of anti-retroviral drugs, PEP and PrEP has allowed HIV+ people to lead normal lives with virtually zero risk of transmission and, with, proper medical treatment, no future health consequences.
The only way to combat the cycle of stigma and pain is by educating ourselves, and educating others. Please get tested, know your status. Let’s #EndTheStigma