As I write this – 22 December 2012 – I am marking the fifteenth anniversary of my diagnosis.
This anniversary thing is funny. It may be that the event itself is so marking of our lives that it will always stick with us, the moment when I went from "us" to "them" (or, more accurately from my current perspective, from "them" to "us"). It may also be that telling our stories is such an integral part of living with HIV that it would be unthinkable not to have a well-developed beginning to our stories.
22 December 1997 is the beginning of mine, the date when I went gasping to my doctor appointment and then with his note to the emergency up the hill. The date when I started discovering the solidity of my support network of friends and family, however geographically near or far. The date when I started to be dependent on the pharmaceutical industry for my life and health (and I must say they have done an excellent job so far).
The little new life that was born that day is now fifteen years old – who would have believed that? Now it is her time to come out and take her place, just like little fifteen year-old girls all over Latin America do when they take part in their quinceañera celebrations. So let me, with some concern for the cultural misappropriation and no small amount of irreverence, compare my experience of HIV to a fifteen year-old girl from somewhere south of here…
For many, the celebration begins with a mass. Okay, here I am going to have to diverge from the tradition right away: there won't be any role for the organization that just welcomed with open arms the Speaker of the Ugandan parliament who is pushing for the adoption of the latest incarnation of their new homophobic law. My celebration will have to begin, most appropriately, with gas. Yes, you would think I have been eating nothing but beans for the last fifteen years, as my intestinal fuel factory has been most productive since I started taking those meds.
At this celebration, we do find something with which I can get on board. The chambelanes, who accompany the debutante, put me in mind of those original four CD4+ cells I had when I was diagnosed. Yes, four, so you can understand why I might have doubted getting to this day all these years later. But my faithful chambelanes have stayed with me and multiplied, and I am all the better and more grateful for it.
Now the Quinceañera (the girl IS the event) receives some gifts to mark this occasion. A tiara! Handily, I already have one of those – bought years ago to attend a hat party in another city (surely a tale worth telling separately), so my adoring friends and family can steer clear of Swarovski this time around. A doll – my last doll as I enter into my adulthood? Not so sure about this one, either, as I tend to prefer my humanoids living and breathing. Maybe something to look forward to as I progress into my later teens? Any dolls out there willing to make the sacrifice?
The dress! If you have seen representations of this phenomenon in the movies, it really is all about the dress! Try this movie, which I am looking forward to watching as part of my celebration this year. I'm afraid I will be like the heroine and be forced to wear a hand-me-down dress and give up on my dreams of travelling in a Hummer limo. Unlike the heroine, I am not pregnant (just wanted to put that out there to squelch any rumours), but I am probably a little less chaste as well (sorry Dad: see above notes on dolls).
The other thing I have been told of is the cake. The cake! Apparently as tall and as overdecorated as it can be, but this is really not my style either. I tend to go for complexity in the flavour, but not in the look. And I don't want to be too cake-focused, either, given those pregnancy rumours I referred to above. So it's a simple looking, complex tasting work of culinary art for me, and you may also partake if you are kind to me.
This is also apparently a time of firsts: first make-up in public, first high heels…all those things that one might associate with a grown up woman. The Wikipedia entry on this notes that many of these "firsts" are no longer firsts in a world in which we all grow up so fast. It should be no surprise, then, that this fifty-two-year-old Quinceañera doesn't have a lot of undiscovered or unexperienced things left in life either. Are your visions of my purity dashed on the rocks of reality? Mine too.
All in all, I'm looking a little less like a the picture of purity and innocence on the cusp of adulthood and a little more like a drunken and gassy drag queen stumbling out of a taxi at 5 am. At least I have my dignity!
So raise a glass to me this week to celebrate my diagnosis' coming of age. And we'll see if we can't wring another Quinceañera out of the prequel – one doesn't arrive at 4 CD4+ cells without a back story – and yet another out of the sequel, as I show no signs of fading just yet.
Today was the beginning of a trial in a case brought by voters from six federal ridings and supported by the Council of Canadians. The case is asking the Federal Court to set aside the election results because of widespread allegations of fraudulent automatic calls misinforming voters that their polling places had been moved.
There are other alleged shenanigans out there, too. The eventual winning candidate in Labrador supposedly overspent in his election expenses by many thousands of dollars. The Conservative Party settled a previous case out of court, paying a fine with respect to allegations of a large accounting scheme (the "In and Out" scandal) designed to charge certain national campaign expenses through local level campaigns, thereby allowing the national campaign to overspend.
In the current case, the court might decide to set aside the election results and call for by-elections in those ridings. The overspending case might end up in a fine being paid like the "In and Out" scandal. I'm wondering if we don't need to have some more serious penalties if we are to stem the proliferation of these infractions.
If you overspend, there should be a fine, but how about also reducing the spending limit of the candidate and the party by the same amount in that jurisdiction (riding or national level) for the next election? The advantage in one election could be compensated by the disadvantage in the next.
Or how about if you can't follow the rules, you get disqualified from running the next time around? If there's widespread abuse by a party that spreads beyond a single candidate's election race, order the party to be disbanded and its assets seized. Nothing to stop them from forming a new party, but they would have to do that from scratch.
In the spirit of how we are being governed these days, how about making some of these measures mandatory minimum sentences?
Or maybe law and order only applies to the things you're not doing yourself.
On Thursday, 29 November, COCQ-SIDA (the Québec coalition of AIDS organizations) and its member groups held press conferences in Québec City, Trois Rivières, Montréal and Gatineau to launch a new campaign attacking the stigmatization of people living with HIV/AIDS. You will forgive my inordinate pride in this one: this is my organization, but I am not responsible for the campaign itself. I think that my staff and the volunteers who worked to bring this together did an amazing job.
Two previous campaigns, adapted from campaigns from the French organization AIDES, had recruited celebrities to encourage the population to reflect on whether the things they take for granted in their lives would still be there if they were seropositive. Thousands of Quebeckers joined the campaign through a Facebook application that made it possible for them to make their own posters with their images and their own reflective statements. Last year's campaign was covered here.
This year the focus shifted slightly, turning the spotlight on five Quebeckers living with HIV, talking about their lives not only in terms of HIV, but also highlighting the work they do, their leisure-time activities and the things they enjoy in life.
We get to learn that Bruno, very involved in the student strike this year by organizing a conference on the history of the student movement and participating in the "Pink Bloc" of LGBT activists, has committed to his studies for the next six years to obtain his doctorate and makes excellent desserts.
Jacques, who thought he was going to die, has committed himself to working with and for people living with HIV, shares his experiences and knowledge of HIV with people from many age groups and backgrounds through testimonials and is looking forward to watching his grandchildren and even his great grandchildren grow up.
Donald once worked in a government job, but was made to feel unwelcome to return to it after an absence of two years. He enjoys the good things in life: travel, food, humour and — he says with an obvious twinkle in his eye — even a good wine.
Emelyne works in prevention of substance abuse with youth and takes good care of her health so that illness won't interfere with her work or with her pursuit of her many dreams for the future. She has always been committed to destigmatizing HIV, in Canada and in her country of origin.
Yves lost his vision to an opportunistic infection, but he tells us that he is not blind to the rest of the world. He listens to two books a week, is committed to HIV/AIDS work at a national and a local level and has celebrated his 21st anniversary with his seronegative husband.
All of these spokespeople are contributing to the fight against HIV stigma by being themselves, only a little more publicly this time around. You can see their differences, but you can see in each their love of life and their commitment to making society a better place, with respect to HIV, yes, but in many other ways too. The approach of this campaign is to show some real faces, to show the humanity and the diversity of people living with HIV so as to sweep away the caricatures and the fear. These — and many others — are people who have something to contribute to our society and all of society loses when we exclude them.
The campaign is once again using classic paper-based materials like posters, print ads and bookmarks, but is also making extensive use of social media, with YouTube videos, a blog dedicated to the campaign and the issues of HIV stigma and the COCQ-SIDA Facebook page. The launch was very well received and covered by the media all over Québec.
The overarching message is clear and simple. HIV/AIDS is the problem, not the people living with it.
