It’s become pretty apparent that while many people living with HIV are blessed with an undetectable viral load, how we process that information strays all over the map.  It’s a classic case of 'your experience may vary'.  For some, it’s clearly business as usual,  with nothing really changing, while others are in awe of what’s happened to them.

I like that we don’t all think alike on this one.  I like that we all process things at different speeds.  I like that our community includes idealists and pragmatists.  I like our diversity of opinion. I like that out three articles this week will likely reflect that diversity – and then some.

As the first of the three writers giving their take on this topic this week, let me set the scene. Undetectable viral load has been all over the news this month, even in our national press, which rarely covers HIV issues at all, let alone this rather technical, highly nuanced one. The reason, of course, has been the story unfolding in our nation’s highest court, as our side’s  top legal experts, backed by a who’s who of ASOs and NGOs, argue that undetectable load equates to no/minor/virtually insignificant risk of transmission. Take your pick. So by that measure, undetectable potentially changes everything – the legal need for disclosure of one’s HIV status, being viewed as criminals, being scapegoats of the popular press.  It’s one step closer to acceptance if we win, one brick loosened in the wall of stigma. Score one for undetectable.

Confusingly, it’s also being argued away from the courtroom, often by the same organizations, that nothing has changed – that we are still as infectious as ever, that nothing needs to change to our approach to HIV prevention, that risk guidelines remain the same and, from a service delivery perspective, that the same infrastructures that served the dying in the 80s are appropriate today.

The apparent discrepancy in prevention messaging has left some high-profile HIV+ people in our movement, like Sean Strub for instance,  suggesting  that the prevention community isn’t coming clean with us.  Those HIVers are saying that the state of being undetectable is, in effect,  safer than condoms.  Respected scientist Dr Julio Montaner in a phone interview with me last month, said much the same thing. 

My take though?  We can highlight the legal angle, we can highlight the HIV prevention  angle. The BIG story is in fact neither.  It’s the impact of undetectable on our health and on our psyche.  Or not.  That latter impact is clearly not universal, and I must admit I find that  fact a bit strange – more on that later.  I argue that the feeling of being someone who is highly infectious, who could die soon, is much different from someone whose immune system and blood functions much as anyone else’s, who would be hard pressed to infect anyone, and whose potential life span now rivals the next person's.  Not to acknowledge that fact, but to pretend instead that it’s business as usual, seems kind of weird.  It seems bordering on the perverse, in fact, to acknowledge the importance of undetectable only in the legal sense – only in the Supreme Court of Canada – and not in our daily lives, where it has the potential to change everything. If we want it to.

I’ve said before we should be celebrating undetectable, not arguing about it in the courts.

I think often about those who went before us, including my friends, who never made it to undetectable, and who didn’t have the incredible luck I’ve had to live to see this sea-change in the epidemic happen. Coming back from the abyss as I have has been difficult to process at times, but ultimately an exhilarating ride in the front seat of one of THE stories of the twenty-first century.

So yes, I do think undetectable is a big deal, not just a legal thing, or a condom thing, as seems regrettably to be the focus in 2012 - but a “state of mind” thing.  This is my litmus test: blood spilled from my finger in public in pre-undetectable times used to be positively traumatic.  Blood spilled in public now seems not a big deal at all, because in my mind,  it’s “safe”  blood, not a killing agent.

I wrote in a March 29, 2011 article about Post-AIDS titled “Are We Over It? “ that “It's true that we're likely better off health-wise than we have been in a long time.  We don’t always acknowledge that, for reasons that are quite complex.”  I said too in that article – and I’m sure I made no friends with it - that “reluctance to admit the crisis is less devastating than in the old days stems from the fact there is SO MUCH invested - in jobs, dollars, lives - in pretending that nothing has changed.”  I think that remains the case.

In any event, let's see what the others have to say on what undetectable viral load really means to those of us who live with it.  If we all agree, I’ll be mighty surprised.

I thought people might get a chuckle out of the video below.

I actually met my partner in a bar.  It was in San Juan, Puerto Rico of all places, thirty one years ago.  It was a dark and seedy place, with a go-go dancer on a raised stage with red velvet curtains, and a dark backroom off in one corner. I felt totally at home there.

Which is probably why I was quite comfortable when my future partner left the friends he was with to chat up little ole me, standing by myself, probably doing a lot of the things shown in this  video.

By the way, we show a lot of stuff here that’s gay, reflecting that at least in our local market, most people living with HIV are  - well, you know.  But we are not a gay site.  PositiveLite.Com welcomes writers of all persuasions.  If you feel you are under-represented here and would like to change that, drop me a line at This email address is being protected from spambots. You need JavaScript enabled to view it. .

They say that travel broadens the mind.  It certainly fattens other parts of the  body, at least on the basis of  our ten day trip to South Carolina, just completed.  We had decided to drive down – so with two days there and two days back, that’s a lot of sitting – and broadening.

Once there, it was nice - very nice, in  fact – and I’ll talk about that in a minute. But writing about vacations, and vacations for people living with HIV in particular, almost feels awkward.  It shouldn’t do, but it does. I guess it’s because so many people in the poz community don’t take them – it’s a luxury that a meagre government disability doesn’t even come close to covering – so we don’t hear much vacation talk. (How’s lack of vacation for one’s health, by the way?) And to be frank, when we do hear some lucky soul has managed to get away somewhere, it tends to grate. People living with HIV are not supposed to have a little luxury, here and there, right?

But here's the thing. There is a myth  - or at least a mis-statement - that HIV attacks the disadvantaged in our society.  How many times have you heard that, as if the privileged are immune?  In truth, HIV disproportionally affects the disadvantaged. I sometimes think that the focus on vulnerable populations – a key pillar of HIV prevention which largely reflects economics/economies of scale - leaves many people out in the cold.  The results are everywhere.  The roster of poz PositiveLite.com writers, for instance, includes two lawyers, a banker, a public servant.  So many of the people I know who have sero-converted are not, in fact, in “vulnerable populations” at all.

So we acknowledge our privilege and move on.

Back to our journey through middle-America to the south, an area of this continent which aside from Florida – and I never think of Florida as the south – I wasn’t all that familiar with.  We think of the south as antebellum mansions, Spanish moss, quaint manners, a broadly endearing accent  - and mint juleps.  I experienced all but the latter.  Which is a shame, because I don’t even know what a mint julep is, but I wanted one.  Passed on the grits too (do people really eat that stuff?)  and  I should have passed on the chicken and biscuits, a gloppy concoction foreign to our northern palates, and deservedly so.  The hush puppies were OK though.  More than OK too were the regional specialties of the Lowcountry of South Carolina, in particular the Gullah food we became addicted to, a remnant of the black slave culture of the south.

Loved Charleston by the way. If there is a prettier, more civilized-looking  city in North America, I have yet to find it. I could live there. Savannah, which I had high hopes for, even reading up (again) on The Garden Of Good and Evil so that I could really get in to the groove of the city, was a bit of a disappointment.

But perhaps one of the highlights was in fact seeing middle-America and just how interesting that can be.  True, the landscape can look much like our Southern Ontario one - believe it or not, Canada is not all lakes and mountains – but there is an unmistakable foreignness to the United States. It’s hard not to be conscious of the right-wing element, and of the high visibility of religion.  Mostly that’s not a problem when one is travelling through – in fact it’s easy to ignore it.  Only once did it become obtrusive.

On the journey north, we had stopped at a place off the highway somewhere in North Carolina.  It was called Stormin’ Norman’s Barbecue.  Partner Meirion alerted me to the sign outside. ”Do you want to go in or not?’ he said.  “Christian Owned and Operated. May God Bless You as You Travel” he read.  I have no problems with being blessed. So we went in.

We were greeted by a cavernous space, somewhere between a school gymnasium and a real restaurant, with a slightly unpleasant smell and zero charm.  It was packed. The service was cafeteria style.  There was a long list of options available hand-written over the counter, all variations on Sunday-dinner-style food.  The line was moving real fast, so we each grabbed a tray and went for it.

Everything looked like your mother would make  - on a bad day.  Wanting to play safe and because I’d had some excellent southern fried chicken on our trip already, I ordered that, with a side of baked beans and green beans.  The portions were enormous, however, unappetizing looking. I turned down dessert, some gloppy looking stuff scooped out of a large tray.  Trifle perhaps? In any event, the whole ball of wax didn’t cost much. And I had in front of me a piece of chicken breast bigger than the average whole turkey. This can’t be bad, I thought.

We sat down with our trays at one of the booths that lined one wall and looked around at our fellow patrons.  They were all wearing suits, the men that is.  The women, many of a certain age, had on those overly prissy outfits not usually seen outside reruns of The Mary Tyler Moore Show.  I should have mentioned this was about noontime on a Sunday; all these folks had clearly just emerged from church and Stormin Norman’s was where they went next. And did I mention that the busboy had a cross emblazoned on the front of his white t-shirt?

We felt conspicuous.  Nobody seemed to be actually looking at us, but as two oddly dressed strangers in town we would have expected to be looked at.  Nope – they were doing their darndest NOT to look at us, I could tell that. It felt awkward. Plus the food wasn’t tasting all that good – probably the worst, chewiest, least flavourful fried chicken I’ve ever had, in fact.  Colonels Sanders had nothing to worry about here at Stormin' Norman's.

The upshot was we left our food all but untouched, and left pretty quickly.  It just didn’t feel comfortable being in that space, quite aside from the rotten food.  But it left me thinking what a hostile environment places like this would be for same sex couples living in that area, yet alone people living with HIV brave enough to want to disclose, and how political and religious climate does shape our existence, even if we aren’t of the faith.

Let’s be clear, not all the places we visited were anything like this.  We loved West Virginia for instance – what a beautiful state that is – and felt instantly comfortable there.

In any event, the south is nice overall. Today’s  post is illustrated with iPhone photos from the road, a quirky place at times, plus below, one other I liked from my little Lumix which gives  a flavour, perhaps, of the considerable quiet beauty of the south that endears whatever its politics.

Last night the significant other and I went to the opera, which is not quite as la-de-da as it sounds. The opera crowd is far more diverse than it used to be. True, there are plenty of middle-aged frumps, and older, but there are also gays aplenty and yes - last night at least, tons of twenty-somethings in tight jeans and black everything. People don’t dress up for it anymore, or a lot don’t, and that’s good, I think. 

Could be the crowd make-up was a reflection of the fact that the big attraction was Tosca.  It’s one of the most approachable operas you’ll find.  Some will say shows like Carmen or La Boheme or Madame Butterfly are the ones to get your opera feet wet. I say nah -  all three border on the tedious. Tosca, on the other hand, has it all.

Want love, lust, jealousy, attempted rape? How about political intrigue, desperate rebels, evil villains, heroic patriots?  Or murder, executions, suicide? In Tosca, they are all here.  And the soprano dies at the end.  So does the hero, and, earlier,  the villain, bloodily too. And because it’s Puccini, all this is conducted against incredibly lush melodies, lovely set pieces for the soprano (before she jumps to her death) and a powerful orchestral score that might just have you humming on the way out.

It’s all hugely melodramatic, of course, which is an operatic convention of sorts that one has to swallow, along with, in this case, a stylized, traditional acting style that may grate.  But Tosca is nevertheless exciting theatre. Act Two in particular will have you on the edge of your seat – a classic battle of good and evil that is written as taut as a drum and sung to the hilt.  That’s in part why I recommend Tosca as a starting point for those new to opera.  Simply put, you won’t be bored. Everything is larger than life, but rooted in human emotions stretched to the breaking point.

I wish I could recommend this particular production more.  The Canadian Opera Company is a reliable source of good opera, often adventurously staged, and this show, at the Four Seasons Centre for the Preforming Arts until February 25, isn’t the latter. It’s very traditionally staged, in fact.  If you’ve ever seen Tosca before, there are no new touches here. That’s not to say it isn’t gorgeous to look at, beautifully sounding  - both vocally and orchestrally - and that the drama quotient is in any way impacted by the lack of directorial risk-taking.  It’s just not one of those departures from standard staging that some love and infuriate others.

Those non-standard interpretations, by the way, are often popular with younger audiences.  I like them too. They can be quite bizarre.  Instead of legions of spear carriers, for instance, you could see these transformed in the director’s vision to packs of Nazi storm-troopers. Sopranos might be sloshing around in knee deep water rather than singing away on the battlements with a horned helmet on their head.  Or  - and we've seen this in Toronto -  swimming in pools of blood.

Back to Tosca. Despite my disappointment that this production does nothing new, it does what it does well.  You’ll likely love the music, be awed by the big scene at the end of Act One which features a cast of thousands and spectacle for days. You’ll be biting your nails wondering whether Tosca will survive the menacing advances of the uber-villain Scarpia   And  - because Puccini’s material is so strong, and it’s difficult to produce a bad production of Tosca, and this one certainly isn’t – you’ll have a good time.

Going to the opera house is a nice experience too.  It’s circa 2006, with a striking minimalist but grand lobby, all blonde woods, glass staircases and big vistas. The hall itself has a classic horseshoe layout that delivers excellent sightlines and great sound.

One thing I didn’t mention that while opera tickets can be pricy, there are incredible deals for those 30 and under. The opera company wants you.  Give them a try.

I’ve written this report for opera newbies. But will more experienced opera-goers like this show? Probably. The production has garnered generally good reviews, though, sometimes with the same kind of reservations I’ve voiced here too.

Tosca runs until February 25 at the Four Seasons Centre for the Performing Arts, Toronto. Buy tickets here. 

If you are an organization with AIDS in its name, there are probably a few reasons NOT to change one’s name,  No matter if that name relates to a disease scarcely anybody has in North America, or that name scares people away from  the services  that are offered by that “AIDS” service organization.  Life is complicated and so is delivering HIV-erlated services. Sometimes living with an anachronism is more attractive than responding to the changing times. 

But it’s becoming increasingly hard to rationalize why we cling to the name “AIDS” over the door and exclude, in name anyway, all those people living with HIV who make up the vast majority of every organization’s client base. It’s hard to rationalize when that "AIDS" name does not even reflect what our causes are all about - HIV criminalization, HIV stigma, HIV treatment and the like. It’s hard to rationalize when that name keeps newly infected from stepping through the door, keeps people from walking in to get tested.

I am living proof. When I was diagnosed with HIV in 1993 I wanted nothing to do with an “AIDS” organization and even if I did, I would be too scared to be seen walking  in to that building.

Guelph's Megan DePutter did a good job writing about this issue in PositiveLite.com last year and essentially came to the conclusion that AIDS-named organizations are an anachronism. So did the former BC Persons with AIDS Society which changed its name to Positive Living BC. The AIDS Committee of London changed too, so did AIDS Network of Edmonton, progressive agencies all.

Megan DePutter put the case for name changes quite succinctly. “There is so much stigma associated with the word “AIDS” that many individuals choose not to associate themselves with anything or anyone related to it. We know that many people avoid walking in the door of an AIDS Service Organization for fear of what other people think. By changing the names, ASOs are probably hoping to become more accessible and also helping to decrease some of the stigma in general around HIV. The other good reason is that by referring to HIV and not AIDS, the organizations provide a better representation of the realities of people who access the services. “

Personally I think ASOs need to adapt to the times.  We have transitioned from a place where we needed to consider a name change to one where it has become universally and urgently needed.

Nevertheless there seems to be no recent rush, although an agency in the US announced a change just this past week.  Given that the announcement by Rowan County AIDS Task Force, now Rowan Care Alliance, captures the issues quite well, I’m reprinting a condensed version of the news story below..

Rowan County AIDS Task Force changes name

  (From the Salisbury Post, North Carolina.)

The Rowan County AIDS Task Force has changed its name, but not its mission. The nonprofit, volunteer organization continues to provide services that improve the lives of individuals and families infected and affected by HIV/AIDS. It also works to prevent the spread of HIV and AIDS through education and testing. As of Jan. 1, the group is now Rowan Care Alliance.

The group decided to remove AIDS from its name because of the stigma that continues to be attached to people with HIV and AIDS. “HIV stigma is a huge deterrent to testing, education, prevention and outreach,” said Stacey Cuevas, case manager supervisor of HIV Case Management at Rowan Regional Medical Center and a Rowan Care Alliance board member. “Many people, including medical professionals believe that all people with HIV or AIDS are drug users or lead a risky lifestyle.”

The majority of case managed clients - 65 percent - are African Americans. Twenty-six percent are Caucasian, seven percent Latino, one percent Asian and one percent Native American. HIV and AIDS stigma is particularly acute in the Latino and African American communities. Shame and the fear of disapproval, rejection and exclusion keep many Latinos and African Americans from getting tested for HIV or from seeking services.

Lawrence Jones, a client of HIV Case Management, thinks that many people who are HIV positive stay away from getting help because “in Salisbury, everybody knows everybody. They are too embarrassed to come forward; the information is too personal.” Jones, who was diagnosed in 2001, finds that people are generally curious about HIV/AIDS and want to know more about it. “I use it to educate others about the disease. It is not a death sentence.”

“If one person gets tested for HIV because our new name is welcoming and non-threatening, we have succeeded,” said Dr. Gordon Senter, president of Rowan Care Alliance.

 

Sometimes I think we’ve seen every kind of HIV messaging under the sun, and then comes something completely out of left field.

This one is from India and while I like to think I know a fair bit about stigma, having blogged about it and nothing else for six months on Ontario’s HIVStigma.com campaign, must admit I hadn’t considered this take on the subject before. The video below has great production values, but the exact message, in the absence of a knowledge of Hindi, is a bit hard to figure out. It’s from NACO (National AIDS Control Organization, a department of the Ministry of Health and Family Welfare, Government of India). 

I asked PositiveLite.com blogger Devan Nambiar if he could help me translate what was being said, and a friend of his came to our assistance. The translation is below.  But look at the video first and see if you can figure out what’s  going on.

Devan tells me, by the way thatt this video was shown at  Peel HIV/AIDS Network on World AIDS Day 2011.

First guy says - The tube light here gives me allergies.

Second  person (girl) - I don’t like the “vastu” (Indian feng shui) here.

Third guy- My mother says that I’ve become too thin—the canteen here is not good and hence here are my resignation papers.

Fourth guy - The chair here is too small and hence here is my resignation.

Fifth person (driver) - Please clear my dues. I want to learn rocket science.

Sixth guy - I have got a role as a junior artist in Bollywood.

Seventh woman comes to hand in her resignation when the boss says “what is this …everyone is coming here with ridiculous/rubbish reasons for resigning”. The woman says…”you let go Mohit go because he was HIV positive …wasn’t that a ridiculous/rubbish reason?”

Voiceover says “Discriminate against those that discriminate against HIV patients”.

Boss then comes to Mohit and says “Here is my resignation because…the boss here (himself) is not good”…And then he says “Sorry”.

"Discriminate against those that discriminate against HIV patients!"  Hmmm.  I’m not sure that isn’t a bit too much “an eye for an eye" for me, but it IS a different spin on suggesting that there's fallout from HIV stigma, and what we can do about it, plus it demonstrates the unreasonableness that lies behind much HIV-related stigma.

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