Living rural - and positive


I got a spate of comments on my last entry as a result of people who read my other journal coming over here to take a gander at this site.  Good for them. My other journal is here, if you’re interested: http://ruralrob.livejournal.com/ It’s an almost daily chronicle of living in the country, sometimes touching on HIV stuff, but mostly not.   It’s my life.  And tons of photos I’ve taken in and around my little community of 700 people, located in the wilds of Eastern Ontario.

How rural am I? This is the view from my front porch .  .  .

I mention all this partly because it shows, I hope, that we are multidimensional, rather than just people living with HIV. I’m also (I think) the only rural guy on our panel of facilitators, and so I’m very conscious of whether this campaign will make sense to everyone, wherever they live My take is that the look of the site is urban and edgy, which is smart, given that Toronto is the centre of the gay universe, and where much of our target audience is surely located. But not all will live in big towns. So that reference to deciding what to wear to a Madonna concert won’t resonate as much here in the boondocks, where we are more concerned with what brand of rubber boots are best for winter - and fashion be damned

It’s my experience, though, that those of us gays who live away from large urban centres have many similarities with big city guys - and we sometimes share your recreational spaces - but we often lead quite different lives.   Some of us, I know, have isolation issues Toronto folks could only guess at, which fact impacts heavily on our ability or willingness to disclose our status to strangers, for example. Even outing oneself by going to a local AIDS Service Organization for help is a huge step for many. I know, I’ve volunteered at one such organization for years. So I understand these things, even though my own status is one of someone who is out about both my sexual orientation and my HIV status.

I’d love to hear from other folks who live away from large urban centres.   What’s your take on HIV and stigma?  Is it better where you live, or worse?  Harder to disclose, or not?   And do you feel this website speaks to you, or are you feeling left out? I’ll reply to all comments.

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  347. Bob:

    Zac. You say “I got the impression that this site was devoted to reducing stigma, as a prevention mechanism, whereas I think you’re specific blog tries to take on the wider implications of stigma. If the scope is primarily prevention, then I would say that the important message is to drive home any stigma that prevents disclosure prior to sexual intercourse” . Youre on the right lines, except not all of us here are necessarily advocates of dislcosure before sex, when there may be other means of containing risk.

    All of our (edited) video segments tackle stigma in slightly different ways and yes, mine tended to focus on the big picture, i.e societal stigma, in the belief that this had something to say about stigma in the gay community and its impact on HIV transmision. (I’m a big picture kind of guy.) But perhaps that original post didn’t adequately explain my belief that gay men experience stigma differently, and in different circumstances to others, notably of course when having sex. I agree that taking on “big picture” stigma is extremely challenging, although personally I can’t resist a few swipes at it. Stigma in the gay community though, and how it affects the sex we have, lends itself to targetted campaigns like this, I believe, and that’s our focus.

    Does this help in removing the greyness?

  348. Zac:

    “But as I’ve said before, sex and relationships are probably the leaast rational aspects of human behaviour.”

    We’re in absolute agreement here. :)

    I got the impression that this site was devoted to reducing stigma, as a prevention mechanism, whereas I think you’re specific blog tries to take on the wider implications of stigma.

    If the scope is primarily prevention, then I would say that the important message is to drive home any stigma that prevents disclosure prior to sexual intercourse.

    If the scope is larger, then like many complex holistic systems, it might become very easy to bite off more than one can chew.

    Forgive me, I’m a rather black and white kind of guy, and I struggle with concepts that are too grey. Just drop me a note on LJ if my comments are too over the top. ;-)

  349. Bob:

    Zac. I think you’re on the right lines re societal stigma. I wish I could re-do my video post to be more specific, because it’s clear that in some limited ways, things are getting better. I think more folks understand that they are not in danger of contracting HIV except in a limited range of circumstances, so this has helped. Nevertheless, it’s the fear of disapproval, of rejection, of being treated as damaged goods, that causes us poz guys to be reticent about talking about our status. And those fears can be quite real, we know that - they are based on life experiences, after all. So that kind of stigma is alive and well, I think, particularly in the gay community.

    As you say, HIV can easily become one more “disqualifier” for someone wanting to have sex with you or start a relationship, whether that’s a rational judgement or not. But as I’ve said before, sex and relationships are probably the leaast rational aspects of human behaviour.

    Anyway, good thoughts again, Zac. Keep dropping by. I’ve just added a post here on condom use which feel free to add your two-cents worth to.

  350. Zac:

    I wanted to repeat some of the info I posted on your other blog. :-)

    What I have found is that the bulk of educated people look at HIV like many other chronic diseases. Saying “I have HIV”, has far less general “societal” stigma than I ever thought it would. Not saying there is no stigma, but I find that a person’s comfort level, and thus the resulting stigma works via a pretty simple “formula”:

    1) People are “uncomfortable” with a disease or infection when there is a possibility that “your” infection could infect “them”.

    2)The flip side to that coin, is that if your disease or infection isn’t going to kill you in six months to a year[tops], then not only is there little or no discomfort, people are generally apathetic to your plight, as they can only perceive it in a very abstract kind of way. This is just basic human nature when it comes to how we all cope with the one inalienable fact: we all die…

    So to me stigma is directly proportional to the possibility of personal impact, and education.

    We can definitely do a lot around education. With education, people understand that in general day-to-day interactions, “my” disease, doesn’t directly impact “them”, and that goes a long long way towards reducing overall stigma.

    But when it comes to reducing the stigma around “the possibility of personal impact” this one is going to be tough, as it goes against human nature in a lot of way. When it comes to more personal and intimate relationships (ranging from friends, lovers, life-partners) the stigma is rooted in forcing the other person to think about your death, but more importantly it forces them to think about their OWN death.

    Even if the other person knows that they can “technically” protect themselves from infection, there is still the unknown in that we just don’t know how long we’re going to live when infected with HIV. Until we have more science that shows that our length and quality of life, isn’t directly affected by our HIV, then we will face the simple fact that anyone with whom we ask to share our lives, will have to come to terms with this unknown.

    It’s so completely irrational because we never look at someone new and wonder if their genetic propensity for a given disease or condition will inform our choice of whether we will share a part of ourselves with that person; yet this will often have a far greater impact on the quantity and quality of life together than will HIV.

    There is also this kind of delusion among gay men that even the most casual sex can form the basis for a lasting relationship. Combine this with just how easy it is to “meet new people” [hookup] online, and as a result how easy it becomes to “disqualify” people for a variety of reasons; then HIV status gets lumped in with other dis-qualifiers like age, and physical fitness; which are easily “fixed” by using an outdated photo, lying about physical attributes, and thus not revealing your HIV status.

    Until our society drops its dependency on “Sound Bite” information processing and learns to look at complex, multidimensional, holistic systems, then the best we can do is use science to distill these complex systems to their lowest common denominator, and then create a sound bite around it.

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  351. Bob:

    Owen. Thank you. Yours is a valued voice here and I hope you’ll continue to contrrbute to the discussion, either here on the blogs of my fellow-facilitators.

    That discssion with the newly diagnzed young man resonates with me too. You know how out I am, but did you know that I go to Toronto for all my HIV-related health care, even to pick up my meds? At the beginning it was all about the desire for confidentiality etc,, mixed with the realizatioon that supports services for poz guys in the boonies can be a bit meagre. So I even used to travel to Toronto for weekly supoprt group meeetings at ACT - a two hour journey each way. I’m over that stage now, of course, but I still go to Toronto for all HIV health care because although I’m over the confidentiality issues, frankly, I think I get better quaility of care there.

    But being gay and newly diagnozed and living in the country - or even in a small town. Jeez, that’s hard!

  352. Owen:

    Thank you for you blog posts and thoughts on HIV Stigma and the reality for people living outside of large urban spaces. As someone who works in HIV prevention in a small city and large rural catchement area it is refreshing to have your voice as part of the campaign focus.

    Two years ago I was approached by a young gay man at a local event where I was doing some prevention work. He told me that he had found out he was HIV +. The resources he wanted to know about weren’t those locally. Instead he decided that he was going to wait to talk to anybody until he was able to access resources in Toronto. It can be difficult to be out as a gay man in our area let alone adding being HIV+ to the mix. We have so much work to do to improve our society’s attitudes and this campaign, the stories you are all sharing, and the work done by so many will hopefully make a difference.

    Thanks!

  353. Bob:

    Rodger, I hear you. And I honestly think that if I was diagnozed in 2008 instead of 1993, I would be thinking twice about being open about my status too.

    That document you referenced is fascinating, by the way, I hadn’t read it before, so thank you. It’s interesting in that the approach to prevention it centres around - prevention framed in the context of a holistic approach to gay mens sexual heath - is very much the one that Ontario is going in now. I like to think that approach might just be more effective than pushing condoms, condoms, condoms and nothing else.

    Anyway, can I ask you a favour? Your perspective is valuable here, and I for one want to hear how relatively newly-diagnzoed folks think, including particularly the impact of stigma on your life. I’d love you to stick around, visit the other faciltators’ blogs too, and jump in to the dicsussions as often as you feel comfortable.

  354. Bob:

    Brian You make an important point. When I talk about “rural”, it brings to mind folks who live in the middle of nowhere, I suppose, like I do, BUT small town Ontario gay guys frequently share the same issues. And, as you point out, you can get a taste of some of those challenges even in larger centres where support and specialist heallh care services are iffy

    It’s a funny thing but if you live the true rural experience, there is a perception that you will encounter the worst kind of stigma imaginable. In actual fact, country folks are often good folk - kind and understanding to a fault - and if you make the effort to come clean with them, you will likely get nothing but support.= and respect But for many rural poz guys, that step is so intimidating because of the perceived reacton, the percceived stigam, that they dont take it. Thus HIV is largely an underground affair here. And that’s not good.

  355. Rodger:

    The part about how newly infected people are demonized, and how this is getting worse not better, really struck a chord with me, and it’s why, despite being very responsible sexually with others, I do not tell people my status.

    Here is a resource that I think has some smart things to say about why people have unprotected sex beyond being “irresponsible” or “making a mistake”:
    http://www.ericrofes.com/pdf/THRIVING

  356. Brian F.:

    It looks quite beautiful where you are Bob, there are some days, as I live downtown Toronto, that I yearn for the serenity I can see in that photo. Living in rural areas are often experiences the most difficult to address as the resources tend to be focused on the major urban centres. Even living in Regina, a city, I felt unable to access the quality of information and care that I’d see in the three big cities. We only one doctor who was a general GP who took on HIV, and issues of confidentiality and discrimination were huge. Although technically an urban experience, it helps me relate to what it must be like in very small communities.

  357. Bob:

    Ed. Thank you so much for contributing your thoughts here.

    You know, we have a leadership training course for people living with HIV here that is organized by the Ontario AIDS Network - which course I can personally recommend to others, by the way - which uses the history of our movement as its starting place. It’s so important, I think, for everyone who is involved with this struggle to know where we started from. It informs the decisions we make now and inspires us, I think, to continue to try to do better.

    It’s also a very emotional history for some of us who were there, if not for Stonewall, at least for when the first cases of AIDS starting cropping up in our community. And there were the bathhouse raids here in Toronto too which helped galvanize folks to really organize. Again, very emotional times to live through.

    Always there was stigma. Now it has the added attribute of contributing to new HIV infections - something we just can’t sit back and watch any more. This site is trying hard to influence gay mens’ opinions and personal decision-making, by generating thought and discussion on the topic. You’ve added an important piece of the puzzle. Again, thank you

    Please continue to visit the rest of the site, Ed, as it evolves, and feel free to jump in to our discussions as often as you like. How do you like the look of it so far?

  358. Ed in Austin, Texas:

    I can’t begin to describe how moving this site is for me. It’s about a reality - living life under the cloud of a stigma - that every gay person is aware of, but seldom talks about, and every straight person is either unaware of or unable to fully comprehend what it’s like to live with that reality.

    I wish you well with this project. It raises the discussion above even a hint of “poor us” and brings to the surface an honesty that is essential. I’m sure it will push lots of buttons and generate a wide variety of reactions. I’m also sure that a lot of people (even some living with HIV) will echo the Archie Bunker approach of “Can’t you people just keep quiet about this stuff?” But it’s a gutsy and vital approach that confronts the choices involved in moving toward a full, open life or sliding back into the silent obscurity of life in an even darker closet created by the current stigma about HIV.

    I came out in 1959, at the age of 20 - 10 years before the Stonewall riots in NYC. Then life in the closet was mostly about the awareness of being gay and keeping that a secret. It was a life issue, more than a life-and-death issue (except maybe here in Texas where being homosexual carried the death penalty until just a few years ago). There was always an unspoken threat of violence and rejection, but one could still find a social outlet in the gay community. Now there is the possibility of being isolated from that community as well.

    In the turmoil of the 1960’s, I began to realize that coming out wasn’t so much about discovering or revealing something about myself - it’s was more about the choices I made about how I was going to live with the reality of being gay or the consequences of the Big Reveal. Even before Stonewall, I knew that if someone was going to be a friend of mine, they had to know about the part of my life. I was always afraid of how they would react or use the information. But the need for connection overcame that fear - most of the time.

    The new openness that came in the 1970’s felt wonderful - some of us even thought we were home free - even when that freedom was soon colored by more open, violent hostility. But it soon became apparent that the Stonewall riots didn’t change things so much as bring the issue to the surface, and galvanize the gay community into a more cohesive whole (even though it was very fragile at best). When the reality of HIV reared its ugly head, the whole issue of coming out returned; changed in the process. Many were driven back into a more hideous closet of isolation and fear.

    Although they are mostly a distant memory now to many, the Stonewall riots in New York in 1969 brought human faces and lives to the reality of being homosexual. The advent of HIV infection and the fear that generates raises the ante on the issue of coming out and poses the danger of returning to silence, anonymity, and acquiescence.

    There is always the danger of quietly returning to the closet - silently accepting the stigma - once again learning to live in isolation - running the risk of infecting or being infected through denial or fear of the realities.

    There is a greater need now for compassion and hearing what is being said, seeing what happens when silence prevails, and doing something to change that attitude.

    I’ve lived on both sides of the rainbow - and believe me this side is better. But it’s an evolving thing that can never be taken for granted.

    Thanks to all of you involved in this project for keeping the effort live.

  359. Bob:

    Adrian. Thank you so much for adding your perspective. I think it goes along way to adressing the stereotypes that exist about rural gay guys, and shows that there is diversity in this community too. It’s clear that, against all odds perhaps, some folks have broken through the barriers that would otherwise tend to keep them in the closet.

    I don’t know how typical my experience is, probably not very, because my little community seems particularly supportive - and is even quite gay. (That certainly gives you a clue to where I live, if ever you needed one.) Here, in fact, I dont see much evidence of the pervasive kind of stigma that I associate with large cities. Its’ a bit like the movie Big Eden. Nevertheless there are real barriers in a most rural areas, whether perceived or not, to people being entirely open, enough to keep most gay guys’ poz status tightly hidden. And thats’ not a decison I would ever question.

    The dating scene sounds kind of iffy out here - a small pool, as you say, with many folks already in relationships, so it must be hard for the unattached. No wonder many folks head to Toronto to play - where of course they inevitably encounter high HIV prevelence (25% of gay men, we hear) and big city atitudes. It must be a challenge to deal with that too. Hopefully, this site will help.

    In any event, thank you for dropping by. I hope you’ve had a chance to wander around the rest of the site - and comment on the other blogs here too where they pique your interest. Come back often!.

  360. Adrian:

    I hear you loud and clear Bob. My partner and I are both HIV positive, we also live in rural eastern Ontario. We breed horses so I can totally relate to your comment about rubber boots. LOL

    Ultimately the website works for us all - because it’s addressing stigma within the gay community, it’s our own reactions that are being challenged here. The only major difference in the country is that the pool is so much smaller and there are no secrets and anonimity is not an option. The straight members in our community refer to us as “those boys” and although I am very open about my HIV status generally - I am hesitant in my home community. Once that genie is out of the bottle there’s no going back and that’s when other gay men may withdraw, not wanting to be painted with the same brush through association. Thankfully we have a strong circle of friends and very supportive families so for us isolation is not such an issue.

    Before sex with a new partner, I always disclose my status. In my everyday life I will always disclose when asked. Stubborn pride wins out over self preservation every time. I refuse to feel any shame about my status. It’s not who I am, but it colours my life is such vivid and varied ways it creeps into my everyday vocabulary. Thus any one who pays attention to my conversation can figure it out for themsleves anyway.

    I feel it’s my job to educate others when I can and don’t believe there’s any such thing as a dumb question. I’d rather dispell a really assinine myth than intimidate someone into not asking or worse still, walk away without answering at all.

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