AIDSiversary 28 : Older than I thought I would be

This is the year I turned 65, 28 years after my HIV/AIDS diagnosis (yes, the A word, as I had very few CD4 cells and an AIDS-defining pneumonia) and, by subsequent interpretation, likely 44 years after I seroconverted. I have to say that I did not expect to be this old.

But this is the new reality of HIV. Stably controlled virus, time for me to accumulate a number of other conditions to make my life a little more difficult. At least I still have my mind, if not the body that I wanted to have when I was in my 30s.

The big things I am dealing with now are psoriasis and psoriatic arthritis, both of which can really only be effectively treated with medications that are immune suppressive (no thanks, I have that covered!), plus the effects of being very overweight : hypertension (controlled with meds), mechanical problems with my knees (won’t be doing anything about that anytime soon). I guess I just have to own the sloth and gluttony, but that for me has always been a part of being kinder and more forgiving to myself, made concrete in the form of self-indulgence.

But like I said, I really didn’t plan to live this long, so sacrificing for longevity isn’t on my to-do list.

The other thing that this age is bringing upon me is the whole retirement issue. Of course I didn’t plan for it, not expecting to be here. Earlier this year, I let go of an earlier strategy to delay my public pension claims until I could maximize the benefit (age 70), when I realized that if I die earlier I will have contributed all my life and the benefit will revert to the general funds of the government. No thanks! So I am collecting pensions and continuing to work, consigning the pension payments to tax-reducing retirement savings that I just set up this week (better late than never?). I figure that if I work to age 70 as I plan, I will be able to have a double pension from 70 to 75 and surely I won’t live longer than that!

Working until 70 also gives me the next 5 years to prepare to be replaced in my work. Like I sais in a recent reprise of my Je suis seropo video, I will leave the job, but not the work. As the fight against HIV and for the rights of people living with HIV or those the most at risk of it are too important to me to adandon.

Hey, how about my video? Here it ism in French only:

And my last lab results from 15 August (I also had a blood draw last Friday, but it’s a little early for results today).

CD4 count: 246
CD4 %: 27
And someone in the lab cleverly didn’t do a viral load test, but an HIV test instead, so I have no result for that.

This is also the evolution of HIV today: neither I nor my doctor are very worried about not having the viral load result, as I am good with taking my meds and, like I keep saying, stably treated.

I would be more upset if I were still out there “on the market” because the application of criminal law to the issue of non-disclosure of HIV status requires proof of a low (<200) viral load every 4-6 months. I would be disclosing anyway, as I don’t really have much to risk beyond rejection (job, home, solid support network…).

I might have to raise a stink if the lab repeats its error, however….

 

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.

Voting for Equality

I will confess that I felt the same sense of elation as so many others, tinged with a great deal of relief, when the Irish electorate voted decisively to enshrine marriage equality in the country’s constitution. I can’t help wondering, though, what negative effects this might have on other fights for equality, for access to the protections and services our modern societies provide for their citizens. It’s about a majority having the power to determine the level of protection it will afford to a minority. That’s a scary power.

That 62-38% result is pretty stark on the face of it, and very affirming for LGBT Irish people. I’m sure they all had their classic Sally Field at the Oscars moments after the results were announced Saturday: “You like me, you really like me!” While I’m not trying to be Debbie Downer (I guess it just comes naturally), the variations start to point to the problems. Does it mean something different to live in an area that voted over 70% “Yes” as opposed to one where the “Yes” just squeaked through? And considering the turnout of about 61%, even a county that voted 70% for the amendment didn’t actually have a majority of the eligible voters in favour (70% of 61% is less than 43%).

A single county had a “No” majority and as others in the country point an accusing finger at them, they stiffen their opposition, insisting on their democratic right to have voted the way they did. So they had a right to deny my rights?

I do recognize that the Irish situation was different from many. That they had to make a change to their constitution probably means that there was some “traditional” homophobia already enshrined there (and not knowing if that was the case is my great shame as a “researcher”). If there is a prescribed way to change a constitution, you can’t really get around that without becoming lawless, so I’ll grant the necessity of the vote in that sense.

You will hear right wingers in the United States shout for measures like marriage equality to be put to a popular vote, and that is precisely because they have a certain confidence that they can sway the majority to vote their way. Heck, if it can happen in hippie-dippie California, how would the vote turn out in Texas, or Alabama? I think we know the answer to that. In California, it took the courts to undo the discrimination and to tell the population and the legislators that they aren’t allowed to discriminate against that minority. When the legislators lack the courage or principles to protect the basic rights of the few from the will of the many, it becomes the role of the courts to make them do it.

Human rights legislation generally is meant to protect a despised minority from the will of the majority. That might sound a little extreme, especially in this context where the minority doesn’t seem to be all that despised after all, but it truly is the measure of the success of such protections. If an unpopular minority cannot be discriminated against because of the intercession of human rights protections, those protections are working.

If those protections are to be decided upon by the majority, they risk ending up meaningless.

L’INjustice à sa pire

The English version of this article is published on PositiveLite.

Il est possible que mon fil de nouvelles sur Facebook ne se ressemble pas au vôtre, mais vous avez peut-être vu au cours de la dernière semaine l’histoire d’un jeune athlète universitaire dans l’état de Missouri — gai et noir — trouvé coupable de deux chefs de transmission du VIH et de quelques autres d’exposition au risque de transmission du VIH. La peine? 60 ans, mais son équipe de défense essaie de faire purger les deux peines de 30 ans de façon concurrente au lieu de consécutive. Pour avoir omis de dire quelque chose. Si je ne le nomme pas et si je n’utilise pas son image, c’est un choix de ma part : je refuse de participer à la stigmatisation de ce jeune homme en republiant son nom et son image.

C’est le pire cauchemar d’une personne vivant avec le VIH (PVVIH), être accusée par un ancien partenaire de ne pas avoir divulgué son statut avant d’avoir des relations sexuelles, relations qu’il n’aurait jamais eu si seulement il le savait d’avance. Le cauchemar devient encore plus grotesque dans ce cas, un jeune homme gai noir à une université plutôt blanche dans un état avec une histoire difficile au niveau du racisme. Ajoutons que cet état s’est donné des lois criminelles spécifiques au VIH qui ont peu de liens avec la science et qui transforment des fournisseurs de soins en témoins pour la poursuite.

La loi au Missouri

C’est une crime au Missouri pour une PVVIH d’être ou de tenter d’être donateur de sang, produits sanguins, organes, sperme ou tissus (sauf dans le cadre de la recherche), ou d’agir d’une manière insouciante en exposant une autre personne au VIH sans conscience et consentement de cette personne. La loi précise que les expositions défendues comprennent le sexe oral, anal ou vaginal, le partage de seringues ou la morsure d’une manière qui permet le liquide séminal ou vaginal ou le sang de la PVVIH d’entrer en contact avec les muqueuses ou la peau
« non intact » de l’autre personne.

On permet comme preuve que la PVVIH connaissait son statut avant un acte sexuel ou de partage de seringues, un diagnostic de syphilis, gonorrhée ou chlamydia après le diagnostic du VIH ou la preuve d’une autre personne d’un contact sexuel avec la PVVIH après son diagnostic de séropositivité. Et quand on est diagnostiqué au Missouri, il est obligatoire de signer une déclaration reconnaissant le diagnostic, un formulaire qu’ils gardent dans les archives comme preuve de la date de diagnostic. Vous n’aurez pas du counseling sur les conséquences de cette signature, ni accès à un avocat avant de signer.

Qu’est-ce qui n’est pas permis? La preuve d’utilisation du condom lors de la relation sexuelle ne sert pas de défense. Même si on met à côté le fait que plusieurs situations décrites dans la loi ne mèneraient pas à une transmission du VIH, il est clair que le but de la loi est de punir des personnes plutôt que de freiner la transmission du VIH. (Ils veulent décourager les PVVIH de se faire dépister pour les ITSS? Vraiment?!!)

Vous pouvez consulter la loi de Missouri (en anglais) ici si vous souhaitez le faire. La peine maximale est de 30 ans s’il y a transmission et de 10 ans s’il n’y en a pas.

L’autre chose qui me paraît étrange de ma perspective confortable au Canada est que les jurés ont été appelés à déterminer la peine. C’est probablement la rêve de notre gouvernement fédéral actuel, qui cherche depuis des années à réduire les pouvoirs discrétionnaires des juges professionnels et bien formés (mais je ne défendrais pas le bilan de nos juges par rapport à la criminalisation du VIH). Ses « pairs » les jurés? 11 blancs et un seul noir.

Le cas actuel

Mon désavantage en analysant ce cas est que je dois me fier sur les reportages des autres, et plusieurs d’entre eux manquent d’expertise en la matière (soit le droit, soit le VIH). La meilleure chose que j’ai lue en termes de détails est l’article de Stephen Thrasher sur Buzzfeed (encore en anglais). Il ne fait aucune référence aux traitements ni à la charge virale, donc on va laisser ces questions à côté.

Il semble que le jeune accusé, suite à son diagnostic de séropositivité au VIH, a contacté un ancien partenaire pour partager la nouvelle avec lui. On dirait comportement exemplaire de sa part, mais son partenaire a réagi en l’accusant d’un crime, ce qui a vite mené à son arrestation (devant les autres étudiants à son cours), expulsion de l’université et, bien sûr, la une du journal local avec nom, photo et statut. On connait trop bien ce qui suivait — la recherche d’autres « victimes » par un appel au public et par la fouille de son ordinateur et son téléphone. Je soupçonne que la police ne cherchait que des noms de possibles « victimes » et non pas des preuves de divulgation (en chats et échanges de courriel, par exemple).

C’était quand la dernière fois que la police a lancé un appel public avec nom et photo à la recherche d’autres victimes de la brutalité policière? De la conduite dangereuse au volant? De la fraude? Non, il semble que ces actions se limitent à ce qui nous fait le plus peur, peu importe la validité de la science derrière cette peur.

Notons dans l’article sur Buzzfeed quelques déclarations de la « victime » #1. Il a déjà eu des relations sans condom avec d’autres dans le passé, mais c’était avec des amis ou des connaissances, ou bien des gens qui paraissaient « clean ». Voilà celui qui fait sa part pour mettre fin à la transmission du VIH. Bien que je ne souhaite jamais que quelqu’un soit infecté, j’ai de la misère à tolérer une personne qui blâme les autres tout en se reposant sur ses propres « stratégies » inutiles et mal conçues pour éviter une infection. Je lui dirais en bon anglais « Bite me! », mais ça pourrait lui exposer à une poursuite au Missouri, donc je m’abstiens.

S’il y avait des bonnes nouvelles dans toute cette histoire sordide, c’est que plusieurs des « victimes » ont refusé de porter plainte, mais je n’explore pas de près leurs raisons par peur d’éteindre cette lueur d’espoir. Même avec ces refus, la poursuite s’est permis de se prévaloir du fait que l’accusé a filmé plusieurs de ses rencontres (on me dit que c’est pas si rare que je penserais) pour informer les jurés que ses rencontres étaient beaucoup plus nombreuses que les accusations devant eux. Je présume que le but de cet exercice était de faire peur du
« monstre » devant eux avant qu’ils prononcent la peine.

Les problèmes du dévoilement

Ma parole contre la vôtre. C’est ça, le problème de base avec la divulgation ou la non divulgation dans un cas de criminalisation. Même si un juge ou les jurés ont l’obligation de chercher une doute raisonnable, il me paraît que la tendance est toujours de trouver l’accusé peu crédible parce qu’il cherche à s’exonérer. On ne pense jamais que les « victimes » cherchent à s’exonérer de leurs propres rôles, ou de leur honte, en insistant qu’il n’y avait pas de divulgation?

Donc comment prouver la divulgation? On suggère de l’enregistrer sur caméra (ou téléphone) ou bien de faire signer une attestation de divulgation et consentement par son partenaire. Personne ne fera ça, à défaut d’avoir vécu personnellement ce cauchemar.

Les tribunaux ne semblent pas comprendre l’autre côté de la divulgation du statut de séropositivité au VIH. Quand je divulgue, je m’expose à la discrimination et au non-respect de mon droit à une vie privée — tout dépend de la volonté de la personne de garder mes informations confidentielles. On voit des cas d’emplois perdus ou refusés, du non-respect de la confidentialité des personnes et de leurs informations médicales — suffisant pour dire que la discrimination relié au VIH est un gros problème dans notre société. Si mes droits ne sont pas respectés, si on me discrimine, ça revient à moi de poursuivre et de chercher le dédommagement ; si je ne divulgue pas mon statut sérologique à un partenaire, l’état se montre plus que prêt à me poursuivre afin de satisfaire chez la « victime » l’esprit de vengeance, de peur, ou de honte de ne pas avoir demandé mon statut, ou de ne pas avoir déployé ses propres mesures préventives.

Si je dis que la divulgation est difficile ou que les moyens de la prouver sont irréalistes dans un contexte où je viens de rencontrer la personne, je sais que je vais recevoir plein de commentaires que je qualifierais d’anti-sexe à l’effet qu’on peut attendre le mariage ou le passage de toute période fenêtre pour se faire dépister ensemble. Je ne reconnais pas la planète d’origine de tels commentaires. Chez moi, il arrive d’avoir des relations sexuelles à la première rencontre et cela n’implique pas la transmission du VIH.

Je me permets de penser que ma séropositivité fait notoriété — je l’affiche sur tous mes profils, mon blogue, mon Tumblr, etc. — mais je sais que cela ne suffirait pas comme défense d’une accusation de non divulgation de mon statut. Je ne divulgue pas toujours, mais j’insiste à ajouter que je ne prends pas de chances de transmission non plus. Souvent, je me trouve dans la position de divulguer mon statut afin d’arrêter quelqu’un dans son désir de faire quelque chose qui comporterait un risque et que je ne voulais pas faire en tout cas.

J’ai partagé dans le passé sur ces pages l’expérience que j’ai eu avec un homme qui m’a posé la question après notre activité sexuelle — j’ai dû jouer au travailleur social pendant une demi-heure pour le calmer (nous n’avions rien fait de risqué et ma charge virale était indétectable). Ma deuxième ligne de défense dans ce cas-là allait être son honte : sa réticence d’admettre et de décrire comment nous nous sommes rencontrés. (Pas de honte de ma part!) C’est probablement une bonne chose que je n’ai pas eu à tester cette approche devant les tribunaux.

Oui, la vie serait beaucoup plus simple si on pouvait tous et toutes divulguer son statut. Mais le monde qu’on habite en est un qui punit la divulgation socialement ou par discrimination et qui punit la non divulgation au criminel. C’est tout un choix à devoir faire.

Singing Night

Okay, let’s get one thing out of the way from the start: I really don’t like military-themed things, least of all a story about World War I, the most stupid and useless war ever. So a little bit of trepidation going to see the Opéra de Montréal’s production of Silent Night (music by Kevin Puts, libretto by Mark Campbell). Of course, this is supposed to be the anti-war story, when the soldiers from the opposing sides (here the Germans, French and British…well, Scots) declared their own truce for Christmas Eve. I probably ought to add that I’m not a big fan of religion, either.

But read on…I still appreciated my evening.

The first striking element was as we took our seats. Projections of the French, British and German flags from the time (okay, only one of those has actually changed since then), fluttering on the curtain up front (first photo above). I don’t know if my photo does it justice, but it was quite striking. It also set us up for another experience of the dynamic projected backdrop, the use of which is a real credit to the Opéra de Montréal. Apart from the war aspects — flashes and smoke — things as simple as the clouds drifting slowly past the moon really added to the texture of the production.

Something you will know about my opera experiences if you have read any of my previous reviews is that I do love a good set. This one was quite good: a round dais in the centre with a sloped top that rotated with great regularity, and split open to reveal the wainscoting of an elegant room for the Crown Prince’s birthday party (a door, a chandelier and a Christmas tree descended to complete the look); an outer ring that had spaced along it the bunkers of the British (Scottish) and German troops and the bombed-out church from which the French were fighting. The extras here got a real workout, as they were constantly pressed into service to rotate this outer ring, often in the opposite direction of the inner one. Constant motion, but we always knew where we were, and we were always focused on the action.

The other thing you will know about my opera experiences is that I know nothing about music, only what I like. And I tend to like light Italian songs with plenty of repetition of the catchy parts and often with many voices singing competing parts that crescendo together. Is that too much to ask? Well, they can’t all be like that, and I fought my impulses to really not like the things that seemed to have been spoken more than sung (especially in English or French, which just seem too common for me, living in Montréal). I seem to have surprised myself by liking the encore that Anna Sørensen (soprano Marianne Fiset) and Nikolaus Sprink (tenor Joseph Kaiser) sing for the Crown Prince. I normally don’t find German, except extreme forms of Swiss German, all that pleasant to listen to (remember by biases, above), but this encore was lovely and remained my favourite song all the way to the end. Of course, it also served to divert the attention of the Crown Prince from the cheekiness of Mr. Kaiser, who had snapped that he had been conscripted like everyone else, when the Crown Prince tried to congratulate him for volunteering to join the army.

So I’m not going to go on any more about the singing, except to say there were some lovely voices on stage and I won’t be insulting the composer or the librettist (who were there, if I am not mistaken in my observation of the curtain calls) by applying any of my uninformed opinions to the quality of their work. Hey — I didn’t walk out, despite all my pre-existing resistance to the storyline, and that is heartier praise than it seems.

At the very least, we all come away having seen a wondrous set, having listened to some delightful singing and having witnessed a thorough denunciation of the utter ridiculousness of war, in particular the stupidest war ever. The punishment of the soldiers who were going to have trouble killing each other after learning that their enemies were just like they were is the exclamation point at the end of that denunciation.

Maybe if we had more peace, we would have more of that light Italian opera fare that I like so much!

Oh, one last note about the sponsors: the US Consulate and Veterans Affairs Canada. I do like seeing support for the arts from all quarters, but I would prefer for the federal government to properly fund the arts and not dip into its savings from closing Veterans Affairs offices and being cheap with support for returning, traumatized soldiers to pay only for something war-related. But that’s my own little rant and slant.

Encore une campagne pharma dans la rue

(The English version of this item is published on PositiveLite.)

Il y a des choses qui ne vieillissent pas, et d’autres dont la « peau neuve » ressemble trop à l’ancienne.

Ce qui ne vieillisse pas, c’est la Déclaration de principes publiée en 1999 par le Conseil canadien de surveillance et accès aux traitements (CCSAT) sur la question de la publicité directe aux consommateurs (PDC). Parmi les conclusions de la déclaration, on trouve :

• Il y a une absence de preuve d’un lien entre la PDC et les meilleurs résultats de santé.
• Il y a une absence de preuve par rapport aux coûts de la PDC. Attendu les sommes énormes dépensées en publicité, il serait raisonnable de nous inquiéter que ces coûts vont faire partie du prix des médicaments sur le marché.
• Les données probantes démontrent un effet négatif de la PDC sur les pratiques de prescription des médecins et sur leurs relations avec leurs patients. Les médecins sentent une pression de la publicité et de leurs patients pour prescrire des médicaments particuliers, que ceux-ci soient les plus appropriés pour leurs patients ou non.
• Il n’y a pas de preuve que la PDC mène à des consommateurs bien informés. La nature de la publicité est de promouvoir un produit, et non pas de fournir de l’information par rapport au produit d’un concourant qui serait peut-être un meilleur choix pour le patient.

Je n’ai nommé que quelques-unes des conclusions de cette déclaration. Je vous recommande de la lire au complet.

Avant de discuter la campagne courante, permettez-moi de citer l’expérience d’une autre, qui date de quelques années. Des personnes qui avait des problèmes à tolérer un certain inhibiteur non-nucléosidique de la transcriptase inverse (INNTI) se présentaient chez leur médecin pour insister sur une ordonnance pour le traitement « une pilule, une fois par jour » dont un des composants était le même INNTI qu’elles ne toléraient pas. Qui a profité de ça?

Et la nouvelle campagne?

Au premier regard, cette campagne fait bien plusieurs choses : une grande variété de personnes représentées dans les images, une emphase sur la préparation pour le rendez-vous avec le médecin avec une liste de questions à poser.

Mais elle n’est pas vraiment nouvelle, cette campagne. Elle essaie quand même d’influencer le choix de traitement avec peu de mots (c’est vrai qu’on ne lit pas des annonces avec beaucoup de mots en tout cas) et sans information équilibrée sur les alternatives ni référence à une source d’information plus complète et neutre. En fait, j’étais étonné de découvrir que, sur le site associé à la campagne, on peut bien choisir les questions qu’on veut inclure sur notre liste de questions pour le médecin et on peut même ajouter ses propres questions, mais la liste s’enregistre sur l’ordinateur avec un nom de dossier préétabli de « demandez à votre médecin si [nom du produit] est approprié pour vous » et ce message est imprimé tout en haut de la liste en format PDF.

J’ai parlé aux représentants de plusieurs compagnies pharmaceutiques à propos de leurs campagnes. Je demande toujours s’ils ont prévu de faire une évaluation de leurs campagnes et la réponse est toujours négative. Une évaluation coûterait presque aussi cher que la campagne, ils disent. Donc ils continuent avec leurs pratiques publicitaires et demandent aux payeurs de rembourser leurs produits à des prix de plus en plus élevés pour couvrir les frais de développement du produit. À la fin, nous payons tous et toutes.

J’ai porté des modifications aux images que j’affiche de la campagne : j’ai couvert le nom de la compagnie et du produit et j’ai substitué mon propre code QR. Le mien vous mènera à la déclaration du CCSAT et non pas au site de la campagne. Je ne voulais pas promouvoir le produit ou la campagne par ma critique. Et, pour m’amuser, j’ai inclus la photo d’à travers la station du métro qui démontre que les annonces illuminés ne peuvent pas être captées en photo…comme un vampire!

Quels sont les règlements aux Canada?
 
Ce serait facile à croire que les annonces pharmaceutiques sont généralement permises ici, car les États-Unis est un des deux pays dans le monde à permettre la libre publicité de médicaments d’ordonnance et les médias américaines traversent facilement la frontière.

La règle au Canada est que la publicité peut mentionner le nom de la compagnie et celui du produit ou la condition que le produit traite, mais jamais les deux ensemble ni en parallèle d’une manière qui permettrait aux personnes de voir le lien. Une compagnie souhaitant annoncer son produit pharmaceutique cherche une pré approbation de ses annonces auprès d’un de deux agences privées qui semblent avoir été mandaté par Santé Canada pour jouer ce rôle.

En 2014, l’absurdité de cette règle est claire : je peux trouver à l’intérieur de quelques secondes la condition traitée par le produit en utilisant mon téléphone et ses fonctions internet. La fiction que le règlement canadien nous protège de la publicité pharmaceutique sans contrainte est, en effet, une fiction.

Nous devons mettre fin maintenant à cette pratique qui coute cher et qui ne sert à rien.

Disingenuous

Another tragedy of significant enough proportion to merit comments from our federal politicians, and I am left cringing and rolling my eyes.

I am not without empathy. The shooting deaths of three RCMP officers and the wounding of two others in Moncton New Brunswick are unspeakable tragedies. I feel awful for their families and outraged that some guy seems to be wandering around armed and not afraid to shoot people. I am no less and no more affected by the untimely death of any person…well, more affected when it is someone I know, for sure.

What outrages me is the automatic glib response of politicians large and small. It usually goes something like this: “Our thoughts and prayers go out to their families.” I don’t for a second think that any of these people saying this actually spend any time thinking about those families, apart from the preparation of their comments, and I don’t know if they spend any time praying for them. As an atheist I don’t really think that prayer stuff means anything, but to each his or her own, I guess.

The transgression is in the automatism. “Thoughts and prayers” fall from the lips like leaves from trees in a windstorm in the fall. Meaningless in its repetition. I can see it getting shortened further, just to take up less time in the busy days of the politicians.

T and P, man.

*Like*

What might be meaningful is some sort of practical contribution to alleviate the ill effects of the tragedy. Support for those who have lost the principal salary-earner? Trauma counseling? But our politicians seem to be all show and no substance, seizing opportunities to bask in the public attention while taking away the supports that might, say, help returning veterans actually get over their terrible war experiences and return to civilian life. We get war memorials with impressive fly-pasts balanced against pension cuts, inadequate lump sum one-time payments and billing families for funeral costs.

What do I have for those politicians? T and P, man, T and P. In my case, however, T and P means Truth and Plausibility, but I have no confidence that my targets will know what to do with them.

Hot comme l’hiver

It had to happen eventually. The third of circus experiences left us feeling like we had strayed away from the circus festival and into a parallel zone with experimental theatre on the bill. My friend went so far as to call it this year’s Ro-Pu (see my roundup from last year’s festival for that Finnish winner).

It might be a little mean to drag them through the mud again this year, only to make a point about someone else. After all, what did they do to deserve this? Oh yeah. Horizontal rope tricks…clinging to a rope…on the floor. At least Voyage d’hiver went vertical every now and then, I’ll give them that.

I have speculated in the past that what seems to make circus interesting, at least to me, is the element of danger, and I might also add grace and beauty to that list. There was a bit of danger here that the company would depart from their soundtrack and that seems to have happened a couple of times (to my ears, anyway). The guy “playing” the whistling kettles almost had me convinced that he was manipulating the sound of the escaping steam with those tiny spoons and the lifting of the kettles. The second pass at that, however, his timing was a bit off and it became clear that it was all soundtrack.

The other slightly off element was a song near the end. Against a very spare background, I found myself very focused on the face and lips of the singer, soon exposed as a lip-syncher, albeit a very good one. It only takes a couple of off-expressions to expose the act, and the focusing of our attention so utterly didn’t help conceal it.

There was some darned wacky stuff that I would qualify as experimental theatre rather than circus. A rolling start (players in action even as the audience members made their way to their seats), nutty animal parts as costumes, a gathering of voyeuristic animals around the woman bathing in a tub of water, props aplenty, songs and speaking parts. Yes, a little acrobatics thrown in, but this was really not enough of a focus and there was little interaction around those parts. They seemed almost gratuitous. But hey, I’m no expert, as I always say.

A taste? You sure?

Making Facebook Meaner

When I first opened my Facebook account, about 689 format changes ago, there was something very polite about some of the interactions. If someone declined your friend request, you didn't necessarily find out unless you checked up on it, and if you turned down an invitation to an event, your name would show up on the "no" list, but that is all.

Imagine my surprise recently when, after sending an invitation to a couple hundred of my closest personal friends, I started getting notifications that this friend or that had refused my invitation! It sounds so cold and nasty! It made me realize that I could no longer just click the "no" button without consequence. I now actually find myself not responding to these requests in order to not offend the person or organization that has invited me. At worst, if my inviter or other invitees get chatty on the event page, I have to say "maybe" just so I can turn off the notifications. I even had to say "maybe" to an event that was already over recently because someone started posting a lot of comments on the event page and it was giving me too many notifications!

Now I'm worried that if I defriend someone or refuse a friend request from someone I only marginally know or don't personally know that the person will get a notification that mean old me has taken this action. I wonder how many friend requests I can accumulate without responding to them. I may be about to find out!

And while we're ranting about the site that occupies so much of my time (talk about voting with your feet — must not be so terrible after all!), I am getting quite tired of having my preferences reset when new changes come about, or having the site decide that I might no longer wish to see all of my friends' posts and switching me back to a select few it has decided I am more likely to want to see. Once I've made my choice, please leave it to me to change my mind: I don't need to be challenged to reaffirm my choices from time to time by undoing something the site does surreptitiously.

Still the best place to share photos and brief news, however, so I'm still sold, or at least rented, on it.

Don't Ask, Just Tell

There's something terribly disappointing about a new tendency to bet on apathy.

Last week, Google (and its alarming array of subsidiaries) consolidated its many privacy policies and announced its intention to begin collecting information from the internet usage habits of its service users in order to tailor marketing to their habits and interests. I might see this as helpful and timesaving if it were not for the fact that these preferences also shape information searches and the like (two people with different browsing histories searching the same terms on Google will end up with different results).

The way out is to wade through the various menus to get to the place where you can turn off the retention of your history. Most people won't do that, so apathy wins for Google.

A similar story is unfolding here on the electronic health records front. Québec is instituting a system of electronic health records which will eventually enable a defined list of health care providers to access records that include prescriptions filled in pharmacies, diagnostic tests and scans. This can be a useful tool, especially for those who might arrive unconscious at the emergency room, but the approach to instituting this is following the same sad path of counting on our short attention spans and inertia.

'Signing up' for this new system is presumed: you have to take action if you don't want to have a file opened in your name. On top of that, the information about withdrawing from the system was sent out in a rather nondescript brown envelope, one per household. This could have been easily missed by an individual living alone. Live with others? Your roommate or family member might have discarded it for you. Your inaction will ensure that the system is broadly applied.

For all the criticism that Facebook gets each time it changes formats, it often starts with a period where the choice is offered. Early adopters choose the new format a few weeks before it is imposed on the rest of the users. Not perfect, for sure, but not putting all the chips on the inaction square either.

I understand that counting on people to take action in order to make your product or service work or sell would be difficult, if not impossible. The growing trend to reinforce our inaction by imposing changes and making action to counter them more difficult than just going along with them is doing nothing to snap us out of our collective torpor.