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Ken Monteith

Ken Monteith

Ken Monteith was diagnosed with AIDS and 4 CD4 cells in 1997. Ken is a recovering lawyer (it's a process!) living in Montréal, where he obsessively counts his CD4s with equal fluency in English and French, pausing only to glare at those who dare to taunt him with their higher numbers.

Feb03

The stigma: it’s coming from INSIDE the house!

Tuesday, 03 February 2015 Written by // Ken Monteith - Montreal Correspondent Categories // Living with HIV, Opinion Pieces, Ken Monteith

Ken Monteith with a personal view on HIV stigma: “how much of it is real and how much is anticipated and built up in our heads?”

The stigma: it’s coming from INSIDE the house!

My headline probably isn’t going to win me any friends. It’s conventional wisdom that stigma is one of the biggest problems we face in the fight against HIV — stigma related to HIV itself, and stigma related to the ways that HIV is commonly transmitted (we still can’t talk openly about sex and drugs after all this time and all these ruined lives). Stigma is the thing that keeps us from being able to communicate prevention messages to those who need to hear them, and stigma is the thing that leads to discrimination against people with HIV that plays out in criminal charges, denied jobs, rejection by those around us. 

But I have to ask how much of that is real and how much is anticipated and built up in our heads. Oh, I have no doubt that there are experiences of discrimination and that people have to live through bad experiences because of the unfounded fears and ignorance of others. But do we all? 

Let me be the first to point out the privileged positions from which I can issue such speculation — I’m an educated, fully employed white man in a society built for educated and employed white men. Oh yes, and my employer being an AIDS organization, it won’t be my status that gets me sidelined from there.

I have still had some experiences of “outsiderness” based on being gay and then based on having HIV and they haven’t been pleasant to endure, but I’m not sure how much focusing on the negative experiences might be skewing my assessment of my overall experience. 

I had a conversation at work the other day that brought this home in a broader way. In our society, we have support groups for people who have had bad experiences — botched operations, difficult medical conditions, mistreatment by authorities of one sort or another. What we don’t have is a focus on what goes well or smoothly. We’re really set up to bask in the bad things and let the good ones pass us by. So, in that sense, let me re-examine my own experiences of HIV, always bearing in mind all those pesky advantages I have on my side. 

When I came out as gay to my family, I put myself through hell getting there. My sisters were the easiest for me, so they were the first, and I pretty much got acceptance and not much surprise from them. I’ll leave out the one thing one of my sisters said that wasn’t the best, because she is horribly embarrassed to have said it at all. That didn’t really help me to tell my parents, and I went through years more of agony and hand-wringing, tinged with depression, before finally writing a letter from afar. Their reaction was immediate and very positive. My hell was for nothing, and what a relief that was. When it came to telling them about my HIV diagnosis many years later, I had no hesitation, and I had all of their support again. 

Thinking on the parallels between the two comings out, I have to say that when I consider most of the people I know who are gay, lesbian, or anywhere else on the queer continuum, I know very few who have been rejected. I’m aware of the horror stories of some unfortunate individuals, but the positive ones and the neutral ones are far and away the majority of the stories I’ve heard out there. I don’t think that’s because I am insulted or sheltered from them, or that I travel only in privileged circles. I think it’s that most of the stories out there are positive, or at least not negative. That doesn’t make the negative ones any more acceptable, but it ought to help us put them into perspective, and hold up the good experiences as models to follow and learn from. 

Coming back to HIV, I have to say my experiences have been similar. A lot of anticipation of rejection and hostility going on in my head, but it doesn’t play out that way most of the time. I can’t bring myself to attach much value to the fears or judgements of people whose own attitudes will deprive them of the opportunity to get to know more about me than my HIV status, and the people whose opinions and reactions matter the most in my life — family, friends, colleagues — have been very supportive. When I overcome the anticipation of rejection to actually share, it tends to turn out just fine. 

I know that stigma and discrimination exist because I do see them at work every day. I just wonder how much we are immobilizing ourselves with the fear of something that is not as pervasive as it may appear.

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