Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of 'crackpot' than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost.
"Present fears are less than horrible imaginings."
William Shakespeare Macbeth
This will rile a few people. We are neither immune from stigma nor are we the victims of it. The fear and loathing of others is not my internalized fear. My internalized fear is what keeps me from uttering the words “I’m HIV positive” to a potential sex partner – until we’re going to “do it”. My internalized fear of what others think is what allows me to live in shame of my sero-status. I can blame myself and be miserable.
Inasmuch as Depew is talking about ideas, I think there is space here to talk about HIV and how we are, or are not, open about our status. In the early days of gay liberation, gay men and lesbians were stigmatized – clubs were raided and people were arrested. Did that stigmatization stop them from opening their mouths and railing against the inequity?
And so here we are: HIV-positive and often fearful and silent. I wonder sometimes if we safely hide behind the wall of “stigma”. Stigma is a buzz word in the lexicon of well-meaning social workers and others in the AIDS industry and we’ve latched onto it as a community. We surround ourselves with stigma like a comfy blanket and use it to remain hidden; blending into the bland and worn wood panelling of society.
I think that Shakespeare has it right. He talks about how our fears, our present fears, are really less frightening than what we create in our imaginations. This is at least accurate in my personal life: I’m fully capable of creating an imaginary apocalyptic world of devastation where none exists.
Are we labelled? Yes. Are we loathed and rejected by some? Yes. Do we turn that on ourselves and see our “infection” as a thing that disgusts even us at our core? Yes. We are “dirty”, “unclean” and perhaps, as in the caste system “untouchable”. And none of that is true. It’s a fabrication, a story within which we have decided to dwell.
Stigma comes from a Greek word meaning “tattoo”. I wonder if we sometimes see the scourge of HIV as the mark of Cain – a big blotch etched on our foreheads for the entire world to see. We may have no outward marks or blemishes and yet we are certain that somehow everyone knows.
I’ve decided to be out about my status for many years now. This little blog has a readership that is supportive of people living with HIV. But in my own community, I’ve done interviews and had my picture published as a gay man living with HIV. Reactions have mostly been supportive, although I’ve had to do a fair amount of education with people about what my experience means to me. Hopefully, I can transform the puppy dog looks into smiles when I display a sense of humour about living with HIV and my plans to be a cranky old man pushing his way to the front of the line at the bus stop. Hopefully, I can be a Sacred Clown, and like the activists who came before me, open the eyes of those that are blind to life and show them a new way to look at the world. Hopefully…
Many will disagree with me, but I believe that the more we say the word “stigma”, the more we encourage stigmatization and the more we engage internalized stigma. The longer we hide in the shadows and remain fearful the longer society will continue to be afraid of us. The Supreme Court and those people who decide to put themselves at risk for contracting HIV (or any other STI) will blame us for their own personal sexual and substance using decisions. We will continue to be viewed as the vectors of disease, no matter how safe we make our partners and no matter how well-crafted our arguments are about personal responsibility and the need for safe behaviours.
But what if…? What if more and more of us emerged from the constricting gloom of HIV and “came out” about our status? What might happen? I think that there would be backlash, just as in the early days of the black or gay rights movements – but I think there would also be a slow and gradual understanding that we are just people living with an illness. Fear and ignorance would dissolve the more we became human and ceased being monsters.
I’ve decided that I’m not a monster – I’m Michael. What others think becomes less important to me from that frame of mind. That doesn’t rule out that I will be rejected, but I refuse to reject myself. I refuse to buy into the stigma that I’m told by others I’m experiencing.
In the words of Emil Zola “I am here to live out loud.”