Drop-kicking HIV/AIDS stigma to the curb

“This December I found a mass the size of a cantaloupe in my lung…I used social media to express my feelings without having to burden my family and friends.

I’d like to write a feature…that explores the way the Internet has changed the way we view illnesses, both visible and invisible, and how it’s changed our acceptance of grief and death…”

-Teresa Sarga

As I first reported on Facebook last week I had the opportunity to be interviewed by Teresa Sarga, a journalist and blogger from Syracuse, New York, about blogging as a person living with HIV/AIDS “…and more”.  The issue of stigma is being unearthed and critically examined more and more lately, which is a good thing.

I’ve decided that, so long as I am open, I am not letting stigma thwart me.

Stigma surrounding HIV/AIDS, in my case, began with me.

If anyone deserves AIDS, I told myself, long before I tested positive for the Human Immunodeficiency Virus, I do.

What a statement with which to live my life.

Fortunately I am able to unpack it:

-as if anyone deserves AIDS (or cancer or heart disease or diabetes)

-as if disease and illness discriminate


Review (and a personal retrospective) – Behind the Candelabra

With only the most scant help from Google I have been trying to remember more about my personal, professional meeting with Liberace (“Please, call me Lee.”)

It was some time in the mid-1980s, while I was working at a St. Catharines, Ontario radio station, when the subject of last night’s premiere of Behind the Candelabra was making one of his periodic appearances at Melody Fair Theater on Niagara Falls Boulevard in Tonawanda, New York – a suburb of Buffalo about a forty-five minute drive from St. Catharines.

My first impressions of Melody Fair were that it had seen better days (and it has since closed, demolished in 2010). The same could be said for Liberace who, after all, was some eight years older than my father who would have seemed “old” to anyone else in their twenties!

The meeting was what I have since learned was a very routine set-up between journalists, celebrity-chasers, and their self-important subjects. My allotted time of ten minutes or so was no more, on less than anyone else in line claiming “exclusive” access from their particular micro-market’s point-of-view.

I had come out relatively recently and took it upon myself to use my time with a slightly dressed down version of himself to tease out Woodward and Bernstein-worthy details of his private life.

What did he like to doon his days off, infrequent though they may have been?

Spend time at one of his several homes. He liked to cook for his “friends” (none of the bawdy details I would have liked to hear, of course, and portrayed in Beyond the Candelabra and Scott Thorson’s palimony-inspired book.

That’s all I remember about our conversation – riveting I know – having been derailed in my aim of making news out of what was inevitably to be a fluffy entertainment piece.

I grew up feeling a lot of antipathy towards the flamboyant, yet conflicted (a self-professed Roman Catholic) and ultimately talented pianist. This was no role model I would ever want to emulate, should I ever own my own homosexuality.

His age, I suppose, would also have been a factor in his denial of the obvious.

It was, however, his denial of what ultimately killed him that left me feeling quite angry – with him and his church. He never acknowledged dying of AIDS, swearing everyone to secrecy, which of course illustrated the stigma of the times (worse even than now) in his over-the-top way.

I couldn’t separate my feelings for him as I watched last evening, which is not to say that I couldn’t also relate to the inner struggles while recalling my annoyances with him.

Michael Douglas had a hell of a job to do which I found to be well done and credible. Matt Damon also proved himself to be a convincing actor in a gay role and a sympathetic character. In a supporting role I thought Rob Lowe stole the show.

I will watch it again, while it’s still in the HBO lineup, and while I don’t necessarily expect my feelings for Liberace to change I know I am capable of seeing him – jewel-encrusted warts and all.

For a young peoples’ video look at the history of the Tay Canal please click the link below, by which I mean…

this one!

I am so proud! Not that I had anything to do with this (and I didn’t) but because the video shows how the appreciation of Perth (Lanark County, Ontario, Canada) history is, and will continue to be, alive and well!

Congratulations to everyone, particularly the young people and their mentors, who made this possible.

AccolAIDS much appreciated!

Healthline editors recently published the final list of their favorite HIV & STD blogs and I’m pleased to let you know that this blog made the list, which can be found here (in no particular order).

I am very appreciative of this vote of confidence!

Kenn Chaplin is no defeatist; he’s brazen, energetic, gut-wrenchingly honest, and inspiring. This active blogger, political activist, traveler, and long-time AIDS veteran knows a thing or two about living with AIDS.

He fills his blog with jokes, personal stories, tributes to friends who have lost the fight, and lovely photos of anything he wants. Along the way, he educates his readers about life with AIDS. Kenn knows (and shows) it’s not always easy, but hopefully he also knows how important his strong, steady voice about life with AIDS is for the rest of the HIV/AIDS community. Go, Kenn!

Pig Penn – warped perspectives in the Penn State scandal

Very puzzling, but markedly less infuriating than the sexual abuse and cover-up scandal shrouding Penn State University, is the thoughtless, pigskin-headed response last night by student mobs to the sackings of the university president and, much more of an issue, the football coach.

Now that’s an improvement!

Watching a news conference held by the university’s board of trustees vice-chair, John Surma Jr., there was an audible gasp of indignation from assembled media and students alike as the forced resignations were announced. In the questions that followed it was easy to distinguish between journalists who had a bit of perspective on the tragedy of the abuse scandal and its victims and those muscle-heads who were apparently thinking only of the fabled football program, its storied coach and the team’s next game on Saturday.

How and when was the coach advised of the board decision? Was it in person or over the phone?

Objection: relevance?

I wish I had a transcript of the whole press conference.

From the board’s perspective, while voicing concern for the victims and their families, it clearly had a larger agenda: salvaging or re-building Penn State’s reputation among prospective students, staff, alumni and funders.

And while there were a few compassionate questions at the presser concerning the board’s relationship to the victims I couldn’t help feeling that most of the concern among those assembled was for the octogenarian coach, Joe Paterno, who seems to be among those who either engaged in an exercise of plausible deniability or unconscionable cover-up which led to the victimization of even more boys.

My skin was crawling (and burning and peeling a la this week’s episode of  “Michael Tuesdays and Thursdays” ).

This scandal combines unforgettable parts of my past – the bullying by a teacher in elementary school, further bullying by high school students and sexual abuse by men unknown to me in my adolescence.

While I am able to think and feel my way through these triggers, the now fifty-two-year-old man doing so feels tearful empathy for these Pennsylvania victims.

UPDATE: It was a relief to talk about all of this with a group of peers this afternoon. Triggers like this do not surprise me. It is helpful to hear my feelings reflected back to me.

Awesome task (or perhaps not): bridging the perspective gap

Excerpts from my tweets (and a RT) from early this afternoon:

Death by daily repression and near-starvation or death by desperate martyrdom via the State responsible? Your choice? #Bahrain #Libya #Yemen

MD from #Bahrain: “Pls, pls, where is the #UN; we need the world; ppl are being killed in the streets!”

Ambu’s BLOCKED frm #PearlRoundabout as security shoots and kills thru haze of tear gas; MDs plead to world, “Where are you?”#Bahrain

Photo: Protesters prayed for injured comrades outside Salmaniya hospital in #Manama late on Thursday

CBCNN adverts walk-in baths ad naus, Aljazeera Eng (#176 in T-O w free prevws) covers Bah’rain & Libya crises wall-to-wall w ppl on phn .

I’m hungry. Why? Because the late start to my day began only with coffee, HIV meds, Al Jazeera,Twitter and Facebook. Such an embarrassment of riches!

I wasn’t winding up days of mourning for someone today when my country’s security forces opened fire with tear gas and live ammunition.

Am I still pissed with Bev Oda and my government’s dismissive handling of the KAIROS scandal? Sure. Rightly so.

Do I believe that I owe someone an apology, undeliverable until next Thursday, due to a slight delivered his way yesterday? Yes.

Should I surrender my gay card for again postponing a hair-cut, so desperately needed? Honey, do I really need to ask?

Am I pre-occupied with one leg in yesterday, given what has happened to me in the past, and the other in tomorrow, worried about what I’ll have to do in the future – meanwhile, as the off-colour saying goes, “pissing all over today”? (As Cenk, on The Young Turks would say, “Of COOOOURSE!”)

Engaging more in my mental health care

The mass shootings in Tucson, and the evolving picture of the mentally deranged man being held responsible, continue to both intrigue and inform me.

I eagerly watched three of the Sunday morning news shows: NBC’s “Meet the Press”, ABC’s “This Week” and last, only because I wanted to highlight it, CNN’s “State of the Union” with Candy Crowley.

Dr. Fred Frese was on, a psychologist for 40 years, and the former president of the National Mental Health Consumers’ Association, who was diagnosed with paranoid schizophrenia as a young adult.

He also plays a role in an amazing PBS program “Minds on the Edge”.  (It’s just under an hour long but compelling to watch, I assure you)

Everything I viewed and read today helped me to resolve to make more deliberate efforts to look after my mental illness: things like trying to go to bed at roughly the same time each night, avoiding caffeine in the evening (duh!), and to try harder to keep things in order so that I’ll recognize something may be wrong when they are not.

Check my extensive links under Bipolar/Manic Depression for further reading.

Sarah Palin incites stupidity, why not worse?

“If a Muslim put a map on web w/crosshairs on 20 pols, then 1 of them got shot, where would he b sitting right now? Just asking.” (tweet from Michael Moore)

I have nothing but best wishes for the victims and families of today’s gun madness in Tucson. Speaking from family experience, the first brain surgery on Gabrielle Giffords (D-AZ) was probably more about relieving the swelling than about making pronouncements on her prognosis. She does have youth and a ‘through-and-through’ bullet wound in her favour, however.

When Sarah Palin – this one – was reminded today of having put a “target” on Congresswoman Giffords, and others, someone on her staff quietly removed the campaign ad/map from her website.

Remember how many of us shook our heads in disbelief a couple of years ago when guns were found at Barack “Hussein” Obama election rallies and when gun sales increased after he was elected President?

Many Democrats can’t hide their excitement over the prospect of taking on Sarah Palin in 2012 but just how much more of the “Don’t retreat…reload” crap can we tolerate in our political discourse?

But, “Oh no,” gunners always protest, “guns don’t kill people, people kill people.”

Well just suppose Sarah Palin and Ann Coulter and Rush Limbaugh and Glenn Beck (and on and on, ad infinitum)…suppose these people of influence, however dubious, actually had more bricks in their load than we usually give them credit for? (It’s their ideas I actually find crazy not their marketing ingenuity!) Their followers, however, are not all (dare I say not at all) equipped to filter through incendiary rhetoric; and some may be set off, as it were, swept up en masse, yet often acting alone. We must use guns, they attempt to reason, when we have so much to fear.

Politicians are fanning out to reassure themselves that they are all, regardless of political affiliation or beliefs, elected to serve. It’s a comon bond. If we were to base everything we think about politics on what we hear on talk radio, cable news or in “gotcha” sound-bites we would not know that many people we elect, and of opposing political views, actually get along quite well with another.

But, alas, as Keith Olbermann attempts to point out we’d never know that.

Next year will mark 200 years since the start of the War of 1812, when the British, and Canadians loyal to the Crown, defeated the U.S. A. at historic sites along our shared border Re-enactment ceremonies are bound to be part of the commemorations. Do we need to remind people that no live ammunition will be tolerated?

The re-activation of an AIDS activist

While no one could say that I had ever completely stopped my AIDS activism I have, I would suggest, limited myself in recent years to writing or speaking about it on a smaller scale.

It was consistent, determined protests – some of which I was a part of – that led to government speeding up access to HIV/AIDS medicines still in development here for those of us desperate to try them out (these were the days before what became known as the “cocktail” of treatment drugs). I remember picketing the Ontario Ministry of Health for access to the now-primitive AZT medication and that was before I knew my own sero-status. Then, post-cocktail release, I protested with others who could not afford the thousands of dollars per month these drugs cost – leading to the Trillium Drug Program in Ontario (and similar ones in other provinces) which helps not just people with HIV/AIDS but anyone else whose prescription drug costs are prohibitive.

Then in 2006, during a workshop at the national NDP convention on Canada’s role in the world, I almost tearfully spoke of the need for Canada to assist countries of the south who were dealing with HIV/AIDS on a scale we cannot fathom here, and with precious little hope of doing so with treatments as expensive as our own. In what has become my mantra, of sorts, on this issue I asked, “What makes me any more deserving of these treatments than anyone else, anywhere else in the world?” It was around this time, and in the context of a non-partisan debate, that our federal Parliament passed legislation making it possible to ease patent restrictions on these medicines so that generic versions could be made available at drastically reduced costs.

Not one pill has made it out of Canada
, so the sad story goes, although I have also heard of one shipment. This is obviously outrageous, whichever is correct. A bill before Parliament this week, Bill C-393, aims to change this.

So it is with considerable excitement that I look forward to tomorrow’s action at the intersection of Yonge and Dundas Streets over the lunch hour. This note on logistics went out early this afternoon:

To: Canadian HIV/AIDS Legal Network, AIDS Action Now!, and Bill C-393 Student Coalition Organizers

Thank you everyone for all your help thus far in organizing the Bill C-393 “Die-In”. The event is virtually a day away. Find the final details below!

1. Media & Targeting

-Our media representatives are Richard Elliott (relliott@aidslaw.ca), Jolene Cushman (jo.cushman@gmail.com), and Tyler Blacquiere (t.blacquiere@gmail.com), and they will be standing at the Dundas Square corner of the Yonge and Dundas intersection, beginning at 12:00 pm.

-Media Advisories were sent out Friday morning

-Press Releases and follow-ups will be sent out on Monday morning

-Our own photographer and videographer will be on site

-All Members of Parliament will be sent an email with the advisory and press release on SUNDAY

2. Roles (have been filled)

-4 Team Leaders

-4 Team Assistants

-4 Marshalls

-3 Media Reps: Jolene, Richard, Tyler

-1 Whistler, who will also be a Marshall

-2 Banner Holders – Can be identified at the event

3. Logistics of the “Die-In” Itself:

After visiting Dundas Square, we have found out that we only have 20 seconds for each “die-in”

i) There will be four teams for each corner of the intersection. Each team will have a Team Leader and Team Assistant.

ii) When the Scramble Lights go on, two people will run to the middle of the intersection and lie down. At the same time, the rest of their team will take a few steps and then sit down in a crouched position. (This is the only option since time is short!)

iii) At 7 seconds remaining, the head Marshall will whistle and everyone will return to their corner.

iv) We will continue for 30 minutes

4. Schedule for The Day

11:45 am – AAN Members, Leanne, Anda, Ahmad, Olesia, Sahar will be at King’s College Road/College at the U of T Gates. They will divide people into 4 teams.

11:50 am – Everyone starts to walk to Yonge and Dundas

12:00 pm – Media Reps (Richard, Tyler and Jolene) arrive at Dundas Square. They divide the participants who are there into the 4 teams.

12:15 pm – All participants are at Dundas Square. Sahar gives a quick brief on Bill C-393, points out Media Reps, says that we will return to the Square at 1:00 pm after the action

12:20 pm – Everyone is separated into their teams. Team leaders brief their teams.

12:30 pm – Everyone takes their places. Action begins.

1:00 pm – Action ends. Participants who wish to do so file back to the Square. De-brief and thank people. If people want, we can do Postcard Outreach.

5. Postcard Outreach

After the action around 1:00 pm, we will have an optional postcarding outreach in the area. Can HIV/AIDS Legal Network folks bring some postcards along?



Ya had to know I’d have a true John Lennon story of my own, didn’tcha?

I just wouldn’t bet on it ever making it into The Complete History of Music.

On the evening of December 8, 1980, a Monday, I had attended the regular weekly meeting of St. Catharines City Council in my capacity as a news reporter for a local radio station.

I returned to the office, housed in a locally famous old mansion built by Welland Canal baron William Hamilton Merritt, where I shared a few laughs with colleagues who were just about ready to head home.  It was the practice back then for the evening newscaster to pre-record the final report of the day, scheduled for midnight, the risk of “breaking news”, and few listeners besides, not much of a concern to us at that hour.  Peak news and sports numbers in the evening were at 11 o’clock when ten minutes of news was presented by whomever was on duty and no less than twenty minutes of sports handled by the legendary Tommy Garriock (who had an amazing following of horse-racing fans, alone, waiting for him to excitedly read the “win, place and show” results from the local Fort Erie track, as well as those from Woodbine and Greenwood.  It was a ratings delight for management!)

Setting about my work, editing tape of city politicians expounding on who-knows-what issue of the evening, and then writing copy around it, the wire service began to ring a series of bells which signalled something of some urgency.  (This was a time just after the old teletype machines were phased out, which literally typed whatever they were signalled to do remotely.  The new device was a forerunner of the laser printer, but a rudimentary ping of a bell was still part of it.)

The first bulletin was that John Lennon had been shot outside his apartment in New York City.  That was all I needed to break in to the overnight show with a bulletin.  I recall the night announcer on duty was someone whose radio name initials were B.S. (not a reflection on him!)

Reading what little was available I told listeners that I would return with further news.  I then commiserated with B.S. briefly, keeping the door ajar so I could hear the next set of bells.  It wasn’t long after that confirmation of John Lennon’s death went around the world and, in my case, around the listening area of the “golden horseshoe”.

This was as close as I ever came to a Walter-Cronkite-announces-the-death-of-JFK-moment.  Yet here we are, thirty years on, and my memories of that night are still quite lucid.

Several years later, after I no longer worked in radio (nor anywhere at all for that matter due to my illness), a film student from Niagara College – my alma mater – asked me to re-create a short scene from that evening.  I took a bus down from home here in Toronto and, after making the rounds to see old faces on faculty, we used a radio studio where I’d cut my teeth from 1977 to 1980.  The film shoot was, frankly, not terribly dramatic – the focus not on my running around from wire service to announce booth but just a medium side shot of me reading a dramatized version of the 1980 wire copy.

In May of 2001, on my first trip to New York City (as an adult), I visited the Dakota Building and crossed over to Central Park’s Strawberry Fields – a pilgrimage millions of fans have made now for thirty years.

Celebs with $900 sunglasses and Mama’s medicine chest in their undies can be silent today if they want, not me!

I’m all for vaccuous celebrities shutting their yaps today, especially as a fundraiser, but if I don’t tweet or “poke” or “like” it won’t be because I’ve gone silent for World AIDS Day. How many years passed before those in power, like Reagan for example, even mentioned AIDS? And Canada continues to sell out on pacts made for cheap meds in poor countries. Don’t be silent without at least listening!

Town Crier silenced

‘The voice of Valleyfield’ has died and, while I hadn’t given him any thought for many, many years happening on to this story in The Gazette brought back great memories.

Anyone of a certain age from Salaberry-de-Valleyfield, Québec will remember this man’s voice as he drove around town making paid announcements via loudspeakers on the roof of his truck (or van, as I recall). We’d think he would never stop talking as he passed our quiet street along two slightly more heavily travelled routes, making his announcement and then, after a beat, starting all over again. This would have been in the 1960s and ’70s, that I remember, although apparently it lasted longer than that. In fact he outlasted home delivery of eggs, bread and milk from three different men – all of which I remember, despite the rigormortis I’m sure any young bucks reading this think must be setting in to my typing fingers.

Now it’s not like Valleyfield didn’t have other forms of media. There was an AM radio station (it’s now FM), although I’m not sure how many would have listened to it (or perhaps so many did that its advertising rates were through the roof – not likely). There was a weekly community newspaper (and now there are two!) with most people subscribing to Montréal’s dailies and watching television from the city as well.

His first year on the job, 1946, was auspicious to say the least. He was hired by Montreal Cottons to bellow at picketing workers in Valleyfield during what was a violent strike, which I wrote about here a few years ago.

Suffice it to say that Antonin (Tony) Guevremont had a good gig for a whopping sixty years! I didn’t know he was thought of as town crier. (I would only become familiar with that term later in Niagara-on-the-lake and Perth, Ontario, but these were/are of the “jolly ol’ England” variety.)

While, according to The Gazette story, he made announcements for quite a variety of causes I vividly remember a few key words that I could pick out with my then very limited French-speaking abilities:

“Attention, attention, s’il vous plait. Bingo bourse ce soir à huit heures à l’église Saint-Eugène…” and I don’t recall what followed. Nevertheless I had all the information I needed, had I wished it: there was to be an evening of bingo at 8 p.m. at St. Eugene Church (a very modern structure which appeared, at least, to have stained glass from steps to steeple – which someone familiar with such things might have mistaken for broken bottles from the nearby Schenley’s distillery).

Completely coincidentally, that building turned up on the police blotter of one of the aforementioned weeklies last week after a suspicious fire. I gleaned from the article that the Roman Catholic archdiocese had unloaded the real estate and plans were afoot to convert it into a seniors’ centre. How’s that for irony? A Catholic church, used more for bingo than anything else since even I was a kid, now being turned into a place where seniors can (still) play bingo!

I think Tony would get a chuckle out of that. In light of the fire, were he still alive (and working) he might have needed to announce the postponement, or outright cancellation, of bingo!