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


Another important day for self-acceptance




If I have learned nothing else about my bipolar II today, it is that I am certainly not the only one in similar circumstances who has found photography to be a healing past-time. Facebook is teeming today with some of the creative works of the bipolar support community.

Scrolling through various blogs and web sites I have also seen confirmed that we face many of the same risks to ourselves as my fellow survivors of childhood abuse, sexual and otherwise, most pointedly suicide. Which doesn’t make me suicidal. Just so you know. It’s just one of those options I have kept in my back pocket since it seemed clear, however wrong, that I would be dead of AIDS-related illness before the 90s were finished. Of course it’s also a tragic reality among those who suffer from post-traumatic stress disorder (PTSD), as we have heard about too often in connection with soldiers returning from Afghanistan or other battle-weary countries.

To be frank I am feeling very optimistic about my process right now. My p-doc is closely monitoring me as I add another “head med”, as I call them, to my cocktail of HIV, diabetes and bipolar medications. Spring has, for many years, been a time of hypomania which I used to refer to simply as an absence of depression. But it got much worse than a passive absence. When the cat (or black dog) is away, well…I played alot. Absent of depression, present with feelings I thought I could control, a deception of self that alcoholics often talk about, too.

I have often described the feeling of hearing the Bipolar II diagnosis, and the ways it fits me, as a day of sweet relief.  It was difficult enough to live with a lifetime of, let’s say, ultimately poor decisions; I was glad to hear a biological explanation for them  It doesn’t absolve me of everything but I have more compassion for myself and others.

Anyway the new med seems to be helping a lot. There are fewer sleepless nights, especially deliberately sleepless nights and I’m back on an even keel that I have experienced many times before on this journey.

Here is a series of three recent photographs taken here in Toronto, Canada, which I call Walking past colours


1 2 3

Lunch with Vito Russo

Disclaimer:  My memories have been assisted by Google and a piece of paper, 8-1/2″ x 11″ divided in half, on which is written the following:

After signing up for The Movie Network again recently, I came upon the film Vito: A Man For All Seasons.  I was immediately transported back to the early summer day in 1982 when I met the celebrated author, filmmaker and activist Vito Russo. It was at a very ambitious conference, at the U of T perhaps, put on by, among others, The Body Politic collective called “DOING IT! Lesbian & Gay Liberation in the 80s”.

Vito put to words, and obviously used film clips, what he had done in the book but had us riveted with laughter during the presentation and in the question and answer period which followed.

Because I was staying with a couple of the conference organizers for the weekend and, I’d like to recall, at 22 among the younger guys there I was invited to lunch with Vito – then in his 30s and a real looker!

We walked to a patio along the north side of Bloor, I’m guessing near Brunswick, perhaps Dooney’s.

This sheet of paper protrudes from my copy of Vito’s book “The Celluloid Closet – Homosexuality In The Movies” which had come out the previous year (as had I).  I described to him how upset I was that I had not remembered to bring the book along on my break from my then-dreary existence in St. Catharines.  Such, apparently, was the extent of my troubles back then!  He thought nothing of just folding a sheet of copy paper in half and writing the cute note.  This story goes with it whenever the opportunity presents itself.

While I’d like to launch into a tale of love unleashing itself into a passionate, long-distance relationship, as we sat across from one another, I can’t even allow my “based on actual events” note to take me there, as much as I’d like to.

He vented about Ronald Reagan.  (By comparison we were experiencing the second go-round of Pierre Trudeau, the Charter of Rights and Freedoms round at that, with Conservative Brian Mulroney only in our nightmares.)

The documentary inevitably moved to the beginning of the AIDS crisis and its eventual taking of his partner Jim Sevcik in his thirtieth year.  That same year, 1985, Vito himself was diagnosed with Kaposi’s sarcoma and died in 1990, just a year-and-a-half or so after my diagnosis.  But what a difference there has been, both in opportunistic infections and in our respective treatment options.

Vito went on to become a founding member of the media-monitoring group Gay Lesbian Alliance Against Defamation (GLAAD).

In 1987 Vito, Larry Kramer and ten others founded ACT UP!, the AIDS activist organization which has been at the centre of some of the biggest developments in AIDS anger, compassion and care.  A clip in the film is of Vito shouting,

“People are dying of homophobia.  They’re dying of Jesse Helms.  They’re dying of Ronald Reagan…AIDS is a test of who we are as a people!”

Given all he went on to do in his AIDS-shortened life I count it a privilege to remember the joy of that day on a patio in Toronto and the personal touch of his autograph.

December 6th

While we honour the memory of all victims of male violence against women everywhere, before and since, Canadians particularly recall today – on this our National Day of Remembrance and Action on Violence Against Women – the names of the victims of the Montreal Massacre at l’École Polytechnique on December 6, 1989:

Geneviève Bergeron, 21, was a second year scholarship student in civil engineering.


Hélène Colgan, 23, was in her final year of mechanical engineering and planned to take her master’s degree.


Nathalie Croteau, 23, was in her final year of mechanical engineering.


Barbara Daigneault, 22, was in her final year of mechanical engineering and was a teaching assistant.


Anne-Marie Edward, 21, was a first year student in chemical engineering.


Maud Haviernick, 29, was a second year student in engineering materials, a branch of metallurgy, and a graduate in environmental design.


Barbara Maria Klucznik, 31, was a second year engineering student specializing in engineering materials.


Maryse Laganière, 25, worked in the budget department of the Polytechnique.


Maryse Leclair, 23, was a fourth year student in engineering materials.


Anne-Marie Lemay, 27, was a fourth year student in mechanical engineering.


Sonia Pelletier, 28, was to graduate the next day in mechanical engineering. She was awarded a degree posthumously.


Michèle Richard, 21, was a second year student in engineering materials.


Annie St-Arneault, 23, was a mechanical engineering student.


Annie Turcotte, 21, was a first year student in engineering materials.


Each died, in a deranged man’s gun rampage. because they were women.


AIDS is still here but so am I!

Submitted to Aless.ca today

I find the anticipation, whatever the outcome, of World AIDS Day quietly overwhelming.

“Not much,” I replied to a friend asking what plans I had last night.  I might as  well have had dental freezing in my brain, such was the unacknowledged numbness.

When I think of World AIDS Day I think of, as a blur, the forty or, I’m sure, more friends and fellow travelers who died of AIDS long before, and some since, the chance to survive with complex medications existed.

It is such a blur that I do not wish to single any one out.

Nearly six years ago, a blogger friend in California reminded me of something I do not mention much about my family, and then it’s usually “someone else in whose footsteps I was following”. I always respected my brother’s own, non-blog, ways of carrying himself in public.

Let’s just say there was this guy I write about more than anyone else (me) with an older brother who, like me, is gay and has been living with HIV/AIDS since the 1980s. Both are openly loved and accepted by family, close and extended, and many friends.

When I “came out” to my parents in 1981 it was not a complete surprise when they revealed that my older brother had also come out to them a few years earlier. One of the reasons I had not been in on that, however, was the fact that I – at that time – was test-driving ways of suppressing my homosexuality, to the point where I joined a right-of-Baptist, left-of-Pentecostal church for awhile. The test-drive, as evidenced in my subsequent writings, ended in a high-speed crash into a spiritual wall. My internal emotional injuries were very serious.

After I came out to our parents my brother wrote me a letter (in those days before email and long before Facebook), another letter I wish I had kept. In addition to lending support and understanding, I recall the note offering some wise advice about the difficulties inherent in living out one’s sexual orientation in a gay ‘community’ which, at times, can seem like a very cruel world. (Rufus Wainwright, a favourite, profoundly captures this in his song “Poses”.)

To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement. However, to this day, I regret any actions that separated us during those times. The relationship thankfully evolved to being much more comfortable over the years.

I learned in confidence, in the mid 1980s, that Craig had been infected with HIV – news which Craig later shared with other family members.

With all of that background, I vividly recall having a picnic lunch, a few years later, with my Mom and Dad during a brief vacation I had taken deliberately to disclose my HIV-positive status to them.

This being 1990, my medicine bag only had AZT in it and yet it seemed like the heaviest thing in my back-pack that day. Knowing that I would need to take that capsule before the picnic party had returned to Mom and Dad’s home I now only recall these key moments of the conversation.

 Kenn: “When Craig told you he was HIV-positive the best information he had, at that time, was that I was negative.”

Mom (sighing deeply): “Oh, don’t tell me…”


That was in the summer of 1990, a little more than a year after routine blood-work had first shown tell-all “counts” in reverse, certainly abnormal, proportions. (Those blood samples, from the spring of 1989, were later tested specifically for HIV and were found to be positive.)

That picnic seems like a lifetime ago. My parents and siblings gradually integrated this overwhelming information and were very accepting as I shared my story publicly, even via television and newspaper media. (One magazine article, originally meant as a simple tribute to my parents’ longstanding involvement in their community, included the traumatic events when my mother barely survived an attack of necrotising fasciitis – ‘flesh-eating disease’ – and how my father suffered a major heart attack as Mom was in the midst of her recuperation at home following more than two months of critical care hospitalization.)

In layer-upon-layer of irony Craig fell in April of 2007 and, tragically, hit his head, suffering irreversible brain damage.  He died a few weeks later just days before what would have been his fifty-second birthday.  Mourners shook our heads as we thought about Craig having survived twenty or more years of HIV/AIDS, quintuple bypass surgery just a year before, only to have a freak fall end his life so horribly.

I still carry Craig with me and, while we shared an AIDS diagnosis as well as our sexual orientation, he was definitely his own man and I miss him as much today as any other.

I’m sure that Craig would be proud of his United Church of Canada electing a gay man as Moderator

The criteria my brother Craig set out for the United Theological College award in his name reads in part:

To recognize the powerful and passionate ministries of gay and lesbian persons and to honour one whose life’s work has been particularly distinguished in its clear commitment to such central Gospel values as personal courage and integrity, life-affirming faith and spirituality, an unswerving commitment to social justice, a sustainable environment and solidarity with those who are poor or marginalized.

Now I’m not making an early pitch for next year’s award but I can imagine that Craig would be pleased and proud of the United Church General Council’s choice of openly gay Rev. Dr. Gary Paterson as Moderator for the next three years. In fact, he was one of three openly gay candidates in a record field of fifteen nominees.

Craig was not completely open with his sexuality right up until he took his early retirement, at which time, it turned out, his parishioners were far more concerned for his health and well-being than his sexual orientation. He had been able to come out to many people in his congregation over the years when he thought it would be helpful but I know he took something of an envious delight in me being as open as I have been for so long.

The United Church of Canada broke new ground, and cracked open parched, dusty ground, when in 1988 – twenty-four years ago – its General Council decided, by no means unanimously, that every Christian, regardless of sexual orientation, was not only welcome in the church but was “eligible to be considered for ordered ministry.”

Craig was at that assembly in 1988, speaking of sexual orientation in the third person, feeling the slings and arrows of the often acrimonious debate. In light of all the love which surrounded us when he died, and the wonderful memories of Craig his parishioners shared, it is still so painful to imagine what that meeting in Victoria must have been like for him and other lgbt colleagues.

That was then. This is now. Although my direct relationship with the United Church has never been the same since Craig’s death, I applaud the decision-makers who re-affirmed the church’s 1988 decision in such a big way.