Tell All: Fresh Thoughts on Disclosure
By Bob Leahy
February 15, 2013
This article first appeared on PositiveLite.com, Canada's Online HIV Magazine.
The Need for Talk
In these times when the conversation is all about NON-disclosure, I'm becoming increasingly a fan of the very opposite. In short, I think many more people need to disclose.
Here's the thing. It's unfashionable to say so, I know, but I think we should disclose, when we can do so safely, in almost all sexual and nonsexual situations where it makes sense. So the mailman doesn't need to know but our family needs to know, our friends and our health care professionals too. And perhaps the world. Because there is a hell of a lot of merit in doing so and very little in not doing so.
I'm tired of conversations with timid souls who worry whether they should tell their dentist or their hairdresser or their (fill in the blank). I'm tired of men who won't tell their sex partners that they are positive before they fuck them without a condom. (And if poz guys fucking strangers without a condom without disclosure sounds a bit wild here, remember that activity is exactly what we've recently argued in the Supreme Court of Canada is perfectly OK, if we have an undetectable viral load. (We lost, by the way.)
Ask our sex partners. They EXPECT us to disclose our status. They think it is the moral and ethical thing to do. I learned that early on in the epidemic from those negative men and women with whom I argued that non-disclosure is OK where the partner is not at risk. "No," they said. "If I am negative and contemplating having sex with someone who is positive, I want them to tell me." And rightly or wrongly the neg partner will then make the decision whether or not to continue the action. That, however hurtful the outcome, is an undeniably reasonable exercise of their civil rights to do with their body as they see fit.
What the Research Says
Canadian Barry Adam's research on the impact of criminalization on people with HIV sheds some light too on whether people living with HIV agree with neg people who think poz people should disclose. In fact 78% of Ontario Cohort Study participants said that disclosure is the right thing to happen, even if their viral load is undetectable. Said one heterosexual participant: "I'm guided by my morals. I don't want to put someone in danger." Another: "I had to come up with principles and ethics, a code of ethics for myself -- and that hasn't changed, given the public climate."
So the research indicates that many (most?) poz men and women disclose not because the law scares them to do so -- the law is in fact an ineffectual ass -- but because they believe it's the right thing to do. They are smart. The right thing to do should be at the heart of all these discussions.
The path to disclosure isn't always easy. Read, for instance, Positively Dating's recent PoitiveLite.com article on what happened when he disclosed to a potential mate. It didn't go well. He experienced rejection. Disappointment. Angst. Feelings of unworthiness. Not nice, but, it happens. It's one of the perils of disclosing, of doing what feels right. Because not disclosing, Positively Dating knows, just doesn't feel right for him.
We desperately need community discussions that deal with ethics, with morality, with subjects we seldom go to in our closed circles. And, let's be clear, there are dangers inherent in going there. Morals and ethics can't be dictated, but they CAN be discussed amongst ourselves. They are not. Ever. It's the territory of the other side, the haters, the ones who comment, often hatefully, on stories in the gay press and elsewhere about sex without condoms and such. The haters, in fact, rule the moral/ethical argument.
That needs to change. We poz folks need to talk ethics too.
In twenty years of being HIV-positive I have participated in dozens and dozens and dozens of workshops dealing with the legality (or not) of non-disclosure. I have never participated in ONE discussion which touched on the ethics of disclosure.
(As an aside, in twenty years of living HIV-positive I have disclosed to dozens and dozens of people. Make that tens of thousands if you include my online activities. In those twenty years , I have never received one bad reaction.)
I think we worry too much about what might happen when we disclose, when more often than not disclosure is met with support, with caring, with admiration -- or with indifference, which is OK too.
Now I recognize that not all people have the luxury of disclosing without considerable harm -- and I am not talking hurt feelings here. Threats, violence, hate-filled rejection -- these can be the very real consequences, particularly for the more vulnerable in our midst. Women often fall into this category, or people in a relationship of dependency, says Barry Adam. That's why disclosure is not an equal-opportunity affair. We can't all get away with it and being marginalized makes it harder. But there are many in our midst who can -- but don't. Scared that they won't get a mate, scared they won't get fucked, scared that people won't like them, scared that the word will get around that they are -- horrors -- poz. Just scared.
And in truth, disclosure can be scary. It requires skill, good timing and experience, knowing what words to use and when. We've been helped precious little in acquiring those skills. Our ASOs for instance are largely missing in action, spending far more energy protecting our identity than teaching us how to come out. It's the neglected art -- a health promotion and wellness tool that they have failed to deliver on, in doing so nurturing both stigma and new infections.
But if disclosure is scary -- in a sexual OR non sexual environment -- it doesn't mean it shouldn't happen. We should encourage and reward bravery, laud those who have overcome the obstacles.
Let's look at our history, the Denver Principles were the foundations of GIPA (the greater involvement of people living with HIV/AIDS). We routinely cite them as the rock, the foundation on what our approach to people living with HIV should be. But who acknowledges that the Denver Principles, contained this statement, a core belief of those early heroes.
"We feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status."
What changed? Maybe we got wiser, or maybe we just got more wimpy. Whatever, that statement, or anything like it, was dropped from the GIPA principles. I was in agreement with doing so then. I'm less in agreement with its exclusion now.
Saying this will earn me no friends, but I'll be blunt. Those who have routinely chosen NOT to disclose in both their sexual and nonsexual lives have contributed to as much stigma as negative people. Because, folks (duh), disclosing leads to a reduction in stigma. That's partly why we do it. Conversely, non-disclosing leads to stigma proliferating and remaining a menace to us all. I'll be blunter still. Every person who doesn't disclose hurts us. Worse, every person who doesn't disclose feeds the stigma that results in increased HIV infections, feeds apathy from funders, feeds the need for hateful legal interventions like those we've seen from the Supreme Court. There is in fact a huge price to pay for non-disclosure which we as people with HIV seldom acknowledge.
And, as the saying goes, if you're not part of the solution, you're part of the problem.
There are SO many people who choose not to disclose but could. People who think it doesn't matter. People of privilege who could ride out any repercussions with ease. People who could be ambassadors but instead choose to remain silent. People who could confront stigma. People who could do something that actively reduces new infections, rather than contributing to them. People who are timid, who have trouble finding the right words, the right moment. People who are brave, but not here. People who need just a little bit of encouragement to speak out but are receiving precious little encouragement -- from anyone -- to do so.
The Legal Framework
I said earlier that the legal framework in which we operate, with its incessant and escalating focus on non-disclosure, has not been helpful. Our representatives have done a good job in explaining what the consequences of non-disclosure are, because in Canada, disclosure is a requirement in an increasing array of sexual situations. But the natural progression from these legal discussions is one where we seldom go -- of the benefits of disclosing and the supporting of people who want to disclose, because it keeps them out of prison, because they feel it is right (and clearly a lot do) and because it is a helpful thing to challenge the stigma inherent in non-disclosing.
I sense there has been some movement in this direction of late, the realization that disclosure is a very valid sexual strategy, and that we need to provide supports to people who want to head in that direction in their lives. But disclosure is also a supremely valid political strategy too. Disclosure is the binding force of most of the activism done here. Organizations such as AIDS Action Now!, for instance, would not exist without openly positive gay men and women who understand the meaning of the slogan "Silence = Death."
To end the epidemic, progressive voices are saying we need to completely change the way we do things. The old ways, the old props, the old technologies, the status quo won't work. They are right. We need to pivot our conversations in entirely new ways that challenge the edicts which have resulted in HIV being a stigmatized disease that proliferates through the silence of the very people it affects. We need to work toward a situation where disclosure is the norm rather than the exception, but which recognizes the rights not to disclose and the difficulties some may have in doing so. This is a sea change from where we are now.
And if I go to one more conference where my delegate tag proclaims my name as Bob L., because some well-meaning insider feels they need to protect my identity from the world, I'll scream. My name is Bob Leahy and frankly I don't care who knows I'm HIV positive.
Care to join me?
A banker turned AIDS activist, Bob Leahy is the busy Editor of PositiveLite.com, Canada's globally read online HIV magazine by and for people living with HIV. Diagnosed with HIV in 1993, Bob has held almost every volunteer position in the HIV community imaginable, including chairing his local ASO and serving on the boards of the Ontario HIV Treatment Network and the Canadian AIDS Society. Recognized on the Ontario AIDS Network's prestigious Honour Roll, his interests lie in social media, gay men's sexual health and making HIV research intelligible for all. A long-time blogger, this ex-Torontonian lives the rural life with his three dogs and partner of thirty-one years.
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