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HIV/AIDS Blog Central

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.


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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.


The Downside

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?

Send Bob an email.

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See Also
TheBody.com's Just Diagnosed Resource Center
Telling Others You're HIV Positive
More Personal Accounts of HIV Disclosure
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Reader Comments:

Comment by: nemo (midwestern city, usa) Thu., Feb. 28, 2013 at 3:14 pm EST
just a month after moving back to my hometown 18 years ago (presumably to die, but thank god for protease inhibitors) a man walked up to me in a bar,thumped me on the chest and said people like me ought to be run out of town because we were spreading the disease. still have no idea how he found out. later, i made the mistake of confiding to the wrong person and soon he broadcast my status and name in chat rooms several times a day. sometimes he included my address. sometimes, when drunk i suspect, he even said that i was intentionally infecting people. my picture and first name were part of my profile. i got harrassing phone calls and many threatening IM's. i was lonely and unemployed. i went to the chat rooms to pass time. every time i went in i was greeted with comments about dementia and facial wasting. i tried my best to rise above and meet their hatred with civility, but it was far from the companionship i craved. people were viciously insulting and rude. the name calling was childlike. i tried to reason, but there was no reasoning with people on a witch hunt. i was scapegoat and whipping boy. thank god chat rooms have fallen out of favor. i've been made aware of a medical professional who treats me who discloses my status. there are several others in town who love to make sure that the first thing a person knows about me is my status. in many ways, i feel i don't need to disclose, because everyone else is doing it for me. the author of the article said that he had never experienced a negative reaction, perhaps if he had walked in my shoes he'd be a little more protective of his privacty which is how i've come to see the issue of disclosure. why should i tell some random stranger online or at a bar, who i'll never sleep with, something intensely personal about my life. My health, sex life, finances and emotions are my business. i'll share when i see fit and when i feel the person is trustworthy. problem is if you share with one,you share with the village
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Comment by: MAT S. (BOSTON, MA,USA) Thu., Feb. 28, 2013 at 1:05 pm EST
We need ACT UP and other groups to shake people up. Nobody seems to care that gay men r getting infected at an alarming rate. Young gay men do not think its a big deal. It is, live with HIV/AIDS is not easy. Its time to create a cure. HIV is so under funded. Wake up and demostrate. Cause the life u save might be your own. I started ACT OUT NOW*** AIDS COMMUNITY TO go OVER UNDER THREW, NOW OUR WAY. (BOSTON)
People still die of HIV/AIDS. Does anybody care????
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Comment by: Ángel Luis Hernández (Orocovis, Puerto Rico) Mon., Feb. 25, 2013 at 5:38 pm EST
I do care to join you. Non-disclosure adds to the stress of being positive. Fear of being discriminated and stigmatized keep persons with HIV off needed treatment and care. And Community-Based organizations or AIDS Services Organizations are not likely to promote empowerment of persons with HIV. We need to raise our voices, UNITED, and fight for our rights and ourselves.
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Comment by: Dan D (Ottawa Ontario) Sat., Feb. 23, 2013 at 8:34 am EST
Clearly this article was true to the author's views but also intended to be provocative. I do think that several of the commenters here have hit the nail squarely on the head though.

It has to do with privilege -- those in positions of comparative privilege and comfort and safety pointing a finger at the rest of us whose health can be negatively impacted by HIV stigma in our personal lives and employment, perhaps far more so than the author, who makes a token reference to disclosure dangers but then seems to blithely dismiss them for most people. If only!

Yes, a minority constantly disclose and a minority never disclose -- the vast majority of us are in the middle, making decisions about disclosure that are safe, empowering and relevant to our individual circumstances. Here's another article that just came out too, offering a way more balanced take, rather than putting all the focus on poz focus and suggestion most of us have little time to consider ethics, it talks in equal measure about what the rest of people should be doing to help erase stigma that we suffer from and they benefit from. I especially like this quote: "ambda Legal's HIV Project Director Scott Schoettes told me, 'We think it is most important to focus upon creating an environment in which people feel that they can safely acknowledge this aspect of their lives if they so choose, to empower people with information regarding the risks and benefits of disclosure in various circumstances (as well as the legal protections available and the limits of those protections), and to ensure that individuals are making a fully informed and voluntary choice about if, when and to whom it is appropriate for that individual to disclose this information.'" Now, THAT'S a little bit more sane, supportive and rational from my perspective at least.

Read more: http://www.towleroad.com/2013/02/comingouthiv.html
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Comment by: Anthony Clinton (Oshawa ON) Fri., Feb. 22, 2013 at 10:19 am EST
Thanks for a provocative article. Mr Leahy! Sure, you can make an ethical argument for disclosure. One can also argue that disclosure is not an ethical requirement. The problem with asserting that people who consistently disclose are ethical and brave is that you are de facto inferring that those who don't consistently disclose are unethical and cowardly. Which is both insulting and untrue. This article is saying pretty clearly, "Disclosure is the right thing to do and not disclosing is the wrong thing to do." This talk about privilege is also a bit problematic because in this context with little further explanation, it becomes a bit meaningless. To posit "People of privilege who could ride out any repercussions with ease" without saying who you actually mean is a little bit presumptuous and subjective. (Yes, we all experience degrees of privilege, some more than others based on identity factors. But most people with HIV are from marginalized groups, and being poz is marginalizing in and of itself. And I hate to say this, but some of the people who are the strongest advocates of absolute disclosure are those who don't have jobs or whose jobs are in the ASO bubble which is far more supporting than in the rest of the world.) I make decisions about disclosure all the time, and because of the realities of my life, they are pretty careful ones. I'm also a person who is deeply concerned with ethics, even if my positions are not the same as Mr Leahy's and also not defined by the inappropriate anxieties of negative folks. I feel most ethical and empowered when I am supported in self-determination around disclosure decisions, rather than made to feel that the times I disclose are not enough and the times I don't indicate that I'm a bad person. This doesn't encourage me to disclose more often. Thanks, but no thanks, for the added stigma there. Stigma placed on poz folks by other poz folks is more common than we want to admit, and probably some of the hardest to accept.
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Comment by: Evan Hughes (Ls Angeles, CA) Fri., Feb. 22, 2013 at 1:40 am EST
Hey Bob,
I don't necessarily disagree with you but to anyone reading this article please speak with an HIV advocate who has your best interests at heart and not a political agenda before choosing to disclose.It take you are retired and as a former banker have a well developed retirement or other income, which would explain why you completely ignored one of the more serious disclosure downsides, employment discrimination. Not only regarding getting a job but being past over for promotions, raises and general advancement right up to a hostile work place and being wrongly terminated. Even the best of employers need to make smart choices as they are not running a charity. Bosses will look for those who will shine and have their performance reflect well on them for their choice. If someone is seen to be mentally, emotionally or physical compromised they will be taking a risk in advancing them into situation where they could fail (because they were aware of the possibility). Regardless of what you might promise no law will protect any of us, we need to protect ourselves.
As for sexual issues, with only one minor slip up over the last 6 years I have always disclosed to my sexual partners, both online and offline. Of course my doctor and dentist know, even my martial arts teacher and some of the students are aware, beyond that I refuse to have some HIV evangelist preach to me the gospel of disclosure, I say to you walk a mile in my shoes before casting judgment. None of my family members are aware and having them know only spends my burden needlessly to those who can't help me and I get the joy of dealing with their madness as well, what a brilliant solution that only a Western educated mind could love.
Only in the HIV community is there this need to disclose, I don't hear people with Hep B and Hep C having such disclose discussion. You get paid to educate the public so do it stop depending on those already infected to risk everything to make your job easier!
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Comment by: James (UK) Thu., Feb. 21, 2013 at 8:02 pm EST
I'm glad you have had not a single bad reaction. But I've had half bad experiences and a quarter mad but bad consequences for me.

I started telling partners if I had minor STDs after a check-up. Guys were then blaming me for putting them at risk (and more usually their partner whom they perceived I put at risk indirectly, even though I honestly did not know I had anything when I was negative.) I wondered how often these guys went for a check-up themselves but the bad reaction made me more cautious.

I told guys I had just cleared something minor and then they cooled off. Gee the number of late evenings they suddenly had at work, changes of plans, not being in the mood when 5 mins earlier they wanted my address and d*ck up them! (Of course they stayed online checking out alternative d*ck options!)

The worst reaction when I gave them the really bad poz news was to threaten me, harass me (even though often I had not met them), spread my news to friends and barstaff. Truly shocking behaviour from them.

Sorry but I now have to protect myself and my sanity. I dropped out of the scene for 2-3 years with just about no sex before dipping my toe in when everyone had forgotten about me. That was a dreadfully lonely time but I was strong enough to find other things to do. Now I hook up for random anonymous encounters with very little discussed apart from the common use of bb sites.

Rightly or wrongly I have some sexual activity again. Please don't have a go at me. I have just found an approach that now works for me. It's rubbish to say you have to disclose if you get that hassle. It's 10 times worse than coming out as wanting sex with other men.
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Comment by: Alejandro Santiago (San Juan, PR) Thu., Feb. 21, 2013 at 5:01 pm EST
Thank you for your article, I've been poz also for 20 yrs. and I have chosen the disclosure path for the last 15, it has made my life so much easier. It is the right thing to do for me.
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Comment by: Michael Sole (Mexico) Thu., Feb. 21, 2013 at 4:03 pm EST
Kudos!

I am HIV positive and I also don't care who knows it. What others think of me is none of my business.

Just having this exact conversation with another poz yesterday.

Lets end this stigma also.

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Comment by: Brooke Davidoff (Seattle, WA) Thu., Feb. 21, 2013 at 3:19 pm EST
I tell everyone. Not the checker at the grocery store but within months of being diagnosed I realized how little I heard about HIV and women anywhere. I told all my single friends, the CDC never talked to me to find out where I got. Eventually I emailed my exes via Facebook to let them know to get tested for their own sake and to let me know where and when I got it.

I've told co workers & family members. I was told by Drs and support group speakers NOT to and don't see how that helps. If no one talks about it the straight world thinks they are in a huge safety bubble, someone needs to tell them otherwise.
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Bob Leahy

Bob Leahy

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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