AIDSiversary #20

So, I have now survived my AIDS diagnosis by 20 years and I will mark the occasion by venting about language in relation to this epidemic.

Some will balk at the use of the term AIDS at all, and I can understand that to some degree. As the — uh — proud (?!) owner of a diagnosis of AIDS, I have to recognize that it just doesn’t mean the same thing that it did decades ago. In the beginning, it was as much a prognosis as a diagnosis, an indication of where one was on the one-way trip to disease and death. Not anymore. “AIDS” as a term is still useful to diagnoses someone who has waited too long to get tested for HIV or for whom treatment hasn’t been working, but one can now expect to recover from those things. Even I, with my very late diagnosis at a point where I was basically without an immune system, have survived 20 years in pretty good health with treatment.

So I’ll concede that it is not always appropriate to speak of AIDS and most times more appropriate to refer to HIV.

Now we seem to also be dealing with the disappearance of the acceptability of using HIV as a term. I’m not talking about our governments’ tendency toward convergence in their funding and strategies, bringing all sexually transmitted and blood borne infections together — that makes sense all the time for prevention, although it is still useful to pull out the HIV to recognize some of the social effects and stigmatization that are less evident with the other STBBIs. No, I’m talking about addressing HIV stigma by not saying its name out loud, by changing organization names to omit all reference to HIV or AIDS, by speaking strangely about “lived experience” as code for living with HIV instead of naming it. (We all have lived experience of something, right?)

Hiding HIV and hiding AIDS will do nothing to address the stigma that is associated with this epidemic. If anything it will make it worse.

In that vein, let me turn to another practice in our movement, marked as it is by what I like to call the culture of secrecy. I understand confidentiality and the need for it for people the most likely to suffer negative effects of stigma. What I don’t understand is the special brand of zealousness that would impose that secrecy on my own speaking of my own experiences. Let me illustrate with a few examples.

I was recently at the hospital testing centre for my regular blood tests. As the clerk at the desk shuffled through the too-many papers that my doctor had given me to identify which tests to do, she began handing papers back to me. One was for my HIV viral load, and I pointed that out to her: “If I’m not getting an HIV viral load, why am I even wasting my time here?” She fell all over herself trying to keep my voice down, so as not to compromise the confidentiality that I guess I was too thick to protect for myself.

On another occasion, years ago, I was at a gathering of HIV-positive people and proposed a resolution to change the way the minutes of the meetings would be reported. There was in place a practice of blacking out the names of the proposers and seconders of motions to protect the confidentiality of those participating actively at the meetings. My proposal was to allow us to choose whether or not our names would appear as a part of the official record. My motion passed quite easily. When we returned to the same meeting the following year, the most egregious example of this culture of secrecy sprang forth, as the minutes of the previous year’s meeting were presented to us, my motion clear on the page, but my name and the name of the seconder blacked out. (We objected!)

Finally, when my friend Doug died in 2014, the organization with which we had both identified in our pasts proceeded with its annual ritual at its general meeting, naming those we had lost during the year while lighting candles and inviting the crowd to observe a moment of silence. The person reading out the names made an error, diverging from the organization’s usual practice of pronouncing the first name and the initial of the family name, and actually read out whole names. Doug would have approved heartily, as did I. I got up at the end of the meeting and congratulated them on the move, expressing my hope that it was a change of policy and they would not be returning to the other practice.

I understand that not everyone is in my position — I am living my experience of HIV with a lot of privilege. I have supportive friends and family members, it would be much more of a scandal for me to lose my job for being HIV-positive than to keep it (I work for an AIDS organization) and I go about freely identifying myself as a person living with HIV. After all this effort, I will not tolerate my experience of living with HIV being scrubbed from the record, as that would go against everything I stand for.

I would rather be forgotten entirely than anonymized posthumously by some misguided notion of protecting my confidentiality.

La Cenerentola: Come for the music, Stay for the rats!

Over the years that I have been going to the productions of the Opéra de Montréal, I don’t think I have ever had such a crazy, funny, over-the-top experience as I had last night at their production of La Cenerentola. It had everything I love and expect with a healthy dose of some very entertaining surprises.

The audience was in a very good mood, and there really is nothing like Rossini to make you feel upbeat and enthusiastic. I think my favourite operas have this Italian flavour — light, lifting music, wonderful songs intertwining and underlining the voices of the singers. This is the first time that I remember the overture (that music that begins and ends before the curtain goes up) getting a sustained ovation and this before a single not was sung. Totally beautiful.

When the curtain does go up, a lovely simple set that later proves to adapt well to all of the locales it is to portray. For me, yet another set I want to have as an apartment, as I kid myself that I could ever maintain something so stark and beautiful while also living in it. But the best treat of last night was also revealed as the curtain went up for the first time: the rats!

I figure it was the six dancers, who all seem to hail from Montréal, under the direction of choreographer Xevi Dorca from Spain, who so expertly played the rats. They are worth naming: Aymen Benkeira, Dominic Caron, Gama Fonseca, Geosmany Perez-Pulido, Pascal Lalancette and Mathieu Rainville. They sat in the shadows, scurried to avoid the people they knew wouldn’t like them, scratched themselves, scratched at the air and frankly moved like rats. Memories of my own brush with the creature flooded back, this time with much pleasure. And then they did things rats don’t do, but with the same rat movements: moved furniture, conducted a silhouette carriage carrying the prince across the top of the set, then a toy one across the front, with resultant loss of wheel that leads the prince to seek refuge in the wicked stepfather’s house, and they made the sounds of a wind- and thunderstorm with classic soundmaking implements. When in the background, they scurried and his, and yet were visible in their mirroring of the choreography of the rest of the cast. When in the foreground, they rolled and gambolled about in perfect complementarity to the music. Every movement was a joy and a chuckle. Total scene-stealers!

Costumes! A crazy surreal interpretation of renaissance style. The evil step-sisters wandered about in their underclothes for quite a long time, showing us the various structural elements that would give them exaggerated hips under their gowns, balancing towering neon pink and yellow wigs (one pink, the other yellow). The prince’s retinue looked like the Oompa Loompa, but with bright blue wigs, and in true operatic style simple costume changes could disguise a prince as his servant and vice-versa.

Yes, a Cinderella story, but with a few differences. Wicked stepfather, who wastes the fortune that should have belonged to Angelina (La Cenerentola) on his own spoiled daughters, Angelina is sent to the party by a philosopher (not a fairy godmother), who arrives as a beggar (how better to separate the truly good from the evil, but by playing beggar?), and the clue she leaves behind for the prince is her bracelet, one of a pair for which he can search if he really desires her. I saw an interview with Patrick Corrigan, the Opéra de Montréal’s General Director, in which he explained the slipper-bracelet difference. At the time of the debut of this opera 200 years ago, it was considered unseemly to expose a woman’s ankles on stage. The solution was to switch out the slipper for a bracelet, which we all know goes on the much less provocative wrist of its wearer. A pair of them so they could be matched for a positive ID, of course.

So let’s see…music, sets, dancers, costumes, story… Oh! Singing!

I remember seeing another version of Cinderella years ago with a crazy surreal 1950’s-type kitchen in which I felt like the male singers’ voices were totally swallowed by the set. No so this time. I particularly loved Vito Priante in the role of Dandini (the prince’s servant who pretends to be the prince for much of the opera). The wicked stepsisters Clorinda and Tisbe (why aren’t people naming their children such delightful names these days?!), played expertly by Lauren Margison and Rose Naggar-Tremblay, respectively, have some delightful songs to sing and do it with gusto and force. By comparison, Julie Boulianne in the role of Angelina (La Cenerentola) seems a bit quieter (maybe it’s the nature of the songs she has to sing?), but really bursts forth in her solos. The best of it is the duets and the many instances in which the whole cast seems to be singing sometimes competing parts of the same songs. That really brings the whole thing to life.

I keep pointing out that I am no expert on music or opera, and I’m sure that those who are will have figured that out long before this point in my review. But let me just say that if you aren’t an expert and always wanted to know why people would find opera so entertaining, this production of La Cenerentola should be your gateway drug. It continues playing this week, with performances on the 14th, 16th and 18th. Go see it!

Hostage Comedy, part 5: A Hermit with a Modest Proposal or Three

As it turns out, the race days themselves were not so disruptive. Yes, we had crazy loudspeaker radio broadcasts from 8 am that you could hardly ignore (although as we speak, with the windows closed and the air conditioning on, it’s a low rumble in the background), but the cars themselves make a funny whiny sound that one friend compared to something out of Star Wars. Way quieter at this proximity than the Formula 1 cars were at a distance before they built all those condos to absorb the sound.

There’s a certain amount of crowd noise — mostly some annoying whistles that they must have been giving out (stop that!) — but nothing unbearable. A little helicopter noise that I could do without as well. As a whole, however, I stayed in my apartment (not the first weekend I have given over to sloth) and the inconvenience of being walled in slipped by almost without notice. While I didn’t go out to watch, I did watch the main races on TV — and I’m loving that my corner was dubbed “the bus stop chicane”. I may call it that going forward.

But that’s the two days of the race. The three weeks plus all around it is the annoying bit that the city needs to fix if it wants to get me on side.

“On side” might be a bit of an exaggeration. I will likely never see the point of driving around in circles, or believe in the “athleticism” of driving any kind of car. I’m much more sold on the human-powered sporting events, like the marathon and the Tour de l’Île cycling events. They often come past my house, and I find those part-day interruptions of my regular life to be soothing and welcome. Replacing car traffic with runners and cyclists is always a plus, even if it makes crossing the street a bit of a game of Frogger.

So what could make this experience better for me, especially if it comes back next year and the year after? I have a few ideas.

1. Make the installation of the track more green and more friendly to the residents. Work during the day and leave the bus stops operational until the last minute. I really don’t care about the personal car traffic, and I’m sure that will set me apart from many of my neighbours, in particular the ones with cars. If you think your event is going to promote green transportation, especially electric transports, then you bend over backwards to accommodate as long as possible the single-passenger (yeah, I often notice that) combustion engines to the detriment of public transit and the sleeping time of the people who live around the track, you are doing something terribly wrong.

2. Give the residents some real advantages. Everyone in the neighbourhood, inside the track and around it, is living with some degree of inconvenience from the event and the preparations (and doubtless the dismantling to come). Many would say that my last statement is really soft-pedalling it, even though our mayor (who notably lives somewhere far away from all this) is happy to assume the inconveniences as the price of a notable event. So how? Give us all good tickets with seats, accessible from where we live. Rumour has it that many of the tickets were handed out free of charge in the days leading up to the event (can’t wait to see the final accounting on this!), so why not give those tickets to the residents first, before handing them out on the street to other people or making the residents jump through hoops to get standing room tickets? I’m not sure if I would go (didn’t go at all this time, with my stand-in-the-sun-and-get-melanoma tickets), but you never know. (I made no effort to catch Stockholm Syndrome this time around.)

3. The best change of all would be to move the thing to the Formula 1 racetrack we already have (and already have commitments to spend a bunch of money upgrading), avoiding all the inconvenience for the neighbourhood and those who pass through it daily. That’s a winner of an idea — you wouldn’t have to be giving away a bunch of tickets or saddling the public transit system with your apparent unilateral declaration of free transit for the weekend. You would avoid suspending all the parking for kilometres around the site (no parking outside my office 1.5 km away) and avoid ordering the restaurants and bars that count on their terrasses to draw customers in the nice weather to tear them up for the weekend.

So a few modest proposals to consider, while I consider looking for an apartment elsewhere, pushed out of my central neighbourhood where I have lived for 22 years because of the city’s bad planning and worse communication skills.

Oh, and yes, there IS an election coming in November. Will the mayor’s party be riding a wave, or be submerged by it?

Hostage Comedy, part 4: You Can’t Get There From Here

Sunday morning I had an interview, and it wasn’t even about this! The International AIDS Society conference in Paris was getting underway and we had requests for interviews from RDI and ICI Radio-Canada. Did I say early interviews? Not early in the broad scheme of things, but for a Sunday morning when I was expecting to laze about and take my time doing the most basic of things, it was early.

I set out to walk the three and a half blocks from my house to the Maison Radio-Canada with a few minutes to spare. It was a short trip after all, and since my apartment and my destination were both inside Gaytanamo — er, the Formula E track — I figured it would be a quick walk.

A block and a half in, clearly not so simple. I skirted around the “trottoir barré” sign and then a security guard came into view, making signs for me to stop and not to proceed any further. He started to tell me that I would have to circle around the whole area on which the CBC building sits and I cut him off. "I have an interview right there in ten minutes," I said. Subtext: I have no time for your ridiculous bureaucratic attempt to have me take a circuitous path to my clearly visible destination. Oh, and I really have no interest in stealing the bleacher parts that you seem to be guarding.

So I am here to report that bullying (not so proud, but pushed to it) works. I made it for my interview inside the building and then proceeded to interview #2 which we filmed outside (and outside the fences) in the Parc de l’Espoir, our park commemorating those we have lost to HIV/AIDS. (I was happy they agreed to the choice, as we have been trying to make sure to use the park for HIV-related activities as a means of reinforcing its purpose.)

Back to the matter at hand…I will be very interested to see how our movements are restricted within the zone on the weekend. It’s almost enough to persuade a boy to get up early and wander the perimeter!

If you’re interested, you can find the interview here.

Hostage Comedy, part 3: Antici...pation

I’ve spent some time reading the things I have received from the city about my impending imprisonment in my neighbourhood, and I am left with plenty of questions. I decided to send an e-mail with six questions to the contact address. Now I know that I sent this on a Saturday, so I don’t realistically have any expectation of an answer before Monday. Instead, I thought I might share those questions (and the incomprehensible contradictions) here.

The first of the questions was about the two « L’occasionnelle » transit tickets they gave me. There’s some degree of irony in giving me transit tickets while the transit authority has cancelled all the buses I usually take, but we won’t go there. Not again, or more than this anyway. ;-) I just wanted to know how long they are good for once used and if there is an expiry date for the first use.

Second, their delightful booklet says that those accessing Gaytanamo (okay, that’s my name for the ‘hood soon to be fenced in, not theirs) will not have access to the residential zone. I’m trying to figure out how that can be, unless we can look forward to having yet more fences keeping the spectators away from the inmates. And doing that, will they be blocking our views of the event, in case we get curious, or our Stockholm syndrome develops more than it seems likely to at the moment?

In case of said Stockholm syndrome, they did give us tickets for the two days of the event, but specifying a particular spectator entrance. This is not the residents’ entrance. Does this mean that if I want to use these tickets — generous standing room only places — that I will have to leave through the resident access, go back in through the spectators’ access and then repeat in reverse when I want to go back home?

Is the ticket supposed to also serve as my proof of residence? If so, what will stop the probably zealous security person hired at minimum wage to police the residents’ entrance from redirecting me to the spectators’ entrance indicated on the ticket? Do I need to carry other ID with me to prove I am a resident to get back in?

Now those tickets also say no backpacks and obligatory search. Does this mean I must have transported any groceries, drinks, etc. that I might need for the weekend before the walls close? If I try to come home with 4 litres of milk and they try to seize it or disallow it at the gate, I may just throw it on the track. Okay, I didn’t say that last part, and I probably wouldn’t do that. But I do wonder if we can expect some common sense at the access and worry that we can’t.

And my final question is about the time of the ultimate closure of the wall. I have a habit of going to see a movie on Friday night and I want to be sure that I will be able to get home as usual afterward, or will I have to plan ahead to have ID/tickets/etc. and direct myself to the access bridge?

So many questions. I hope I get answers in time!

Hostage Comedy, part 2: Building Gaytanamo

I have the great fortune to be in the middle of the Formula E track and not on the edge of it. Great fortune because I have been spared the noisy work of erecting a multi-layer enclosure on both sides of the eventual “track”, work that the city has decided is best carried out in the middle of the night, so as to most perturb the neighbours. Oh no, so as NOT to perturb the daytime traffic. I may feel differently about my fortune when the walls close around me, isolating me from the rest of the city.

Multi-layer enclosure, you ask? Well, it starts with the custom-made cement blocks at ground level. Not just any block would do — for an event like this, you really need your cement blocks to have an embossed version of the city’s logo on them. On each of them. On both sides. Atop the blocks, metal cage fences with the prison-type angle at the top, although I should not complain about that, as it seems designed to deflect any flying car parts back onto the track and there is not yet any razor wire attached to it.

On the outside of that structure, yet another metal fence erected the whole length of the route. And — I see from friends on Facebook — this will also include opaque plastic sheeting, just to make sure that ground-level apartments will be sheltered from any sun. Or air.

Good thing they are installing all this now, because the two-day race is only a week and a half away. You want to have people confined to their sunless, airless cells — er, apartments — for at least a week before the paying guests arrive. Or will there actually be paying guests?

More updates to come as the walls close in around my neighbourhood. Gaytanamo or bust!

Hostage Comedy, part 1

It started months ago, a ring of my doorbell and a good-looking young man probably taken aback by my rather hostile reception. He was gathering contact information from residents who would be affected by the city’s plans to hold an electric car race (Formula E) around our neighbourhood. The kicker: we were referred to as “special guests” of the event.

I am not a guest. I am a hostage. My apartment is in the middle of the track and the city is currently erecting walls around us. The race is still eleven days away.

I grudgingly shared my e-mail address only with him and each time I received an e-mail from the organizers, I replied with questions about things they had not yet told us. There would be four access points to the “special guest” area. Would they be accessible, I asked? In the next e-mail, it was noted that one of the access points would be accessible. Somewhere along the way the residents (er, special guests) access points became two, not four, and there are three other points for those who are coming for the event.

My questions may have had some impact, I suppose. At one point, I got an answer asking me to specify my address, just to make sure that I was indeed living in the hostage area. I guess I was not communicating enough enthusiasm for the delightful event that would be gracing our neighbourhood.

The inconveniences started early, as the city felt the need to scrape the pavement and repave in anticipation of the race. They worked on that 24 hours a day, much to the delight of some of the residents on the other side of the coming wall, on the north side of René-Lévesque Boulevard. (I am fortunate enough to live on a street perpendicular to that one, and the cars will not be driving right past my house, so no new pavement for us. We did’ however, get to benefit from the interruption of our bus services for much of the repaving process. All without warning or details.

Imagine my delight this morning to discover that the event, still (as I said) eleven days away, has put an end to bus service both north-south and east-west for the next three weeks (see signs in the photo above). I was expecting a day or two, not three weeks more of disruption.

I wanted to make sure that I wasn’t just being a horrible curmudgeon, and I resolved to try to poke fun at all the foibles instead of just whining. Hence “Hostage Comedy” rather than “Hostage Drama”. Looking forward from today, however, I’m at pains to figure out how I will keep a smile on my face while mocking this event.

Stockholm (with its namesake syndrome) has never seemed so far away.