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To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement.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.

Toronto AIDS Memorial, 519 Church Street Community Centre


With one eye on the wider world, marking thirty years of AIDS (and hopes that we may be seeing the beginning of the end), my other eye is on memories of friends lost here in Toronto (and hopes that many more may yet survive).

Ambulance chasers aside, World AIDS Day provides an important focus


By “ambulance chasers” I mean media who wish they could report on the illness, the meds, a cure and some drama all in about 52 seconds.  And they try.

This year, rather than run to the annual UNAIDS report on HIV prevalence (good news and bad news as usual), I invested some emotional energy in assembling the stories posted here earlier today.  I’m definitely going to repeat the exercise and maybe, if I ask earlier, I’ll get a greater response.  Not that I’m disappointed, far from it.  Frankly, with most submissions arriving within the last 48 hours (hardly a surprise), it was all I could do to get them out by a decent hour this morning.

After a brief nap, and an even shorter appointment with my dermatologist, I walked over to the AIDS Memorial for some pictures – touchstones, really, of seeing another World AIDS Day in.  I hope I never take years for granted.

A very light snow-rain mix gave a tear-like sheen to some of the photos.  I wandered through again briefly at dusk as hundreds of red lights gave life to an AIDS awareness ribbon at the front of the park.

Earlier I got in a little closer to the names on the monument than I usually do in photos.  It was beautiful to see some fresh flowers, some not so fresh and I was momentarily overcome as, with the day’s “work” complete, I again saw how wide a swath the illness has cut through my circles of friends.  The hundreds and hundreds of names on the plaques from the early-to- mid-nineties here  zoomed my emotional focus out from the very painful, personal losses I have experienced to memories of how doctor’s visits, hospital stays, wakes and funerals overlapped each other at a dizzying pace sometimes.  A deep breath in and I was filled with the satisfaction, with raw emotion certainly, of the survivor that I am (among many), mixed with the profound loss of memories treasured and memories that would now not come into being.

I’m really tired.  Perhaps I’ll mix in some more reflections in this space tomorrow.

Specifically (what would seem like too much for such a day as this, but only added greatness to it) – wrapping up with a small, intimate number of people a short journey together through a bereavement group.

For now, though, more of today’s pictures.

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!

World AIDS Day 2010 – Stories – 5 – “World AIDS Day 2010″ by Aless Piper


Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

Tony Kushner wrote in the Playwright’s Notes for Act 2 of Angels in America – Perestroika that Harold Bloom translated the Hebrew word for “blessing” as “more life”.

“More life” repeats throughout the second half of the play. Later, Prior Walter says to the Angel of America, “But still. Still. Bless me anyway I want more life.”

I remember the first time I read these words in grade 12 while trying to write my own script for a movie in Film & Video Production. They made such an impact on me that I read them over and over again and they wound up being a scene in my movie.

The play ends with these words, also spoken by Prior Walter, “Bye now. You are fabulous creatures, each and every one. And I bless you: more life. The great work begins.”

On World AIDS Day, this more than anything else, is what I wish for you.

This past June marked 29 years since five men in Los Angeles were diagnosed with pneumocystis carinii pneumonia (PCP), marking the beginning of the AIDS epidemic. To date no cure has been found, and 25 million people worldwide have died.

In Canada, there were an estimated 58,000 people living with HIV/AIDS at the end of 2005. Of these, around 30% were unaware of their infection, a chilling fact that should drive home the importance, for everyone, of getting tested, and knowing your status.

I dream of a world free from AIDS, where Edward, and so many others are guaranteed to live well into old age barring hereditary and environmental factors. I dream of a world where instead of reading that thousands of people worldwide are diagnosed with HIV every day, we celebrate the victory of no new infections (or single digit), and a cure.

When Paul Martin was running for Prime Minister opposite Stephen Harper, the Liberals had a commercial that I only saw once, right before the election. I thought it was best commercial they or any party had come up with. Paul Martin was in a room and he encouraged voters to vote for their Canada. The outcome of the election was disappointing to say the least, I was a Liberal, through and through even though, even then I tended to fall to the left of the Liberal party’s politics. But that commercial always stuck with me. What would you like your world to look like?

I spent all of last weekend reading Kenn’s blog instead of writing and something that seemed to come up repeatedly (or I just read the same thing repeatedly, either way!) is that AIDS is not a single issue journey and it reminded me of a very heated debate on MySpace about how when AIDS is cured the factors that allowed AIDS to happen (apathy, poverty, fear, ignorance, etc) would still be there, a fertile ground from some other disease.

As it stands, so far this week I have posted an article about access to medication in prisons, Uganda’s “kill a gay” bill (Change.org’s words, not mine), and China’s AIDS apathy that boggles my mind. All of these things and so many more allow AIDS to continue spreading unchecked. Today I read on Twitter that 7,000 people worldwide are diagnosed with HIV every single day. A short time later I opened the newspaper to read that AIDS diagnoses among men who sleep with men are climbing back up to rates not seen since the 80’s.

As we remember the lives lost to HIV/AIDS and those living with the disease, we should also be asking ourselves what we can do to change the tide. We can start by being aware, getting tested, being informed and spreading the word.

I would like to leave you with these words from Stephen Spender’s poem, I think continually. They seem especially poignant today, on World AIDS Day.

“Near the snow, near the sun, in the highest fields

See how these names are feted by the waving grass

And by the streamers of white cloud

And whispers of the wind in the listening sky.

The names of those who in their lives fought for life

Who wore at their hearts the fire’s center.

Born of the sun, they travelled a short while towards the sun

And left the vivid air signed with their honor.”

World AIDS Day 2010 – Collected Stories – 4 – The prequel to “My journey with AIDS…and more!” by Kenn Chaplin


These days I still only started to think about trying to get a meal in my stomach once an almost painful hunger came upon me, seemingly out of nowhere, on this occasion at about three in the afternoon.

I had just been to Sunnybrook Hospital where I was part of a clinical trial combining AZT and ddI. (What these letters stand for has never been of much use to me.) The ddI came in packets something like instant oatmeal but was a fine powder which had to be dissolved in water. (Bits of the powder invariably found pockets of my mouth to hide in until the next drink.)

Even after being on AZT for three years, my appetite was often in competition with my fear of “accidents”. I had almost died from a serious bacterial infection a year-and-a-half or so earlier and was, therefore, cautious to the point of negligent when it came to eating. However the hunger won out on this day, even if my choice of meals might have given pause to a dietician.

I was close by a well-loved Canadian chicken and ribs restaurant chain with the unlikely name of Swiss Chalet. (Chocolate and watches, maybe, but chicken and ribs?) Oh well, it had long been a favourite for fast, tasty food with an almost cookie-cutter like predictability. Just the way my not-too-adventurous palate liked it. Besides ‘twas the season for the “Festive Special” when my customary quarter chicken with fries and a roll was supplemented with dressing, cranberry sauce and – the take-away gift – a delicious Toblerone bar.

The attendant at the door seated me in one of those two-person booths across from a foursome of violet-haired women who had thrown their ski jackets and rain coats in a booth of the same size next to them.

It was the sixth observance of World AIDS Day – December 1, 1993 and I was glum. I had been visiting my dear friend Jim who was in deteriorating health (he would die six weeks later) and, while fear of his death was top-of-mind, I wanted to do something to commemorate the loss of so many friends already so I was taking on some calories to go for a walk to a very special park not too far from my apartment.

I took the women friends to be altos, judging by the sub-woofer-quality pitch of their voices. I already knew they belonged to a choir because of their clucking about the sopranos.

“Does it really help to hit such a high note by shouting it?” one asked rhetorically to gales of laughter.

As someone who is equally enthused listening to the conversations of others as I am being engrossed in one of my own, I found myself making mental notes for the great play or novel, semi-autobiographical were I to be asked, rattling around in my cerebral database.

The women gathered themselves up, sharing a laugh over someone I presumed was the choir director, and rustled past me towards the front door. I wasn’t too far behind, such is the efficiency of dining alone in a place where the meats are at all stages of readiness from about 11 to 11 daily. The women scattered at the College subway station, two heading underground, the others going north to College Street itself.

When it came to the next, and most important, errand of the afternoon I couldn’t afford too grand a gesture so, on the way to the AIDS Memorial at the 519 Church Street Community Centre (“the 519”), I bought a large bouquet of wild-flowers which I picked out of a curbside bucket in front of a corner store. A miserable rain-snow mix put a glisten on the cellophane wrapping as I continued up the street.

Walking up the sidewalk, along the side of the 519, and into Cawthra Park, the first few pillars of the memorial loomed into view. I could feel butterflies as I anticipated, and perhaps feared, the feelings that were rising within me.

AIDS had already cut such a wide swath through the gay community and, being as involved as I was with peer support (not directly related to HIV/AIDS), I felt as if I was already ranking the impact of people’s deaths by placing them on an imaginary diagram of inner and outer circles. Yet there were always situations where those rings were intertwined. It was just so pervasive.

I stopped at a pillar to read Michael Lynch’s beautiful poem, noticing for the first time that I was here by myself. The words seemed so familiar, not because I had memorized them, but because I felt as if I had lived them. I tucked a few flowers behind the steel plate on which the poem was engraved and continued up the path. The first names I recognized, friends, came into view. I pulled out several more stems and leaned against the pillar, tears of the day, of years, beginning to flow.

Then I realized that I was no longer alone. What looked like the light of a miner’s helmet was bobbing up the pathway towards me, two voices speaking quietly. As they reached me I recognized them as a TV crew, the familiar CBC logo on a tattered decal stuck on the man’s camera.

The woman I recognized as the reporter, seen both on local and national newscasts.

“I hope we’re not disturbing you,” she said softly, “but we were wondering if we could take some shots of you and then talk for a few moments after.”

“Sure, I guess,” I said, feeling the least telegenic that I ever had.

I continued up the path to the next pillar, again scanning the names until I saw a few more that I knew, placing flowers behind the silver-blue engravings. My reporter friends stayed back several steps, getting a variety of shots I presumed, so I kept to my task – the finding of a name sometimes feeling like a forgotten memory being jacked open, leading me to more names I knew I would locate on the same year’s plate.

The tears, and accompanying sniffles, were fairly steady now as dusk was falling, an unkind wind reminding me of the fast-approaching winter. The reporter and her cameraman were moving closer, the camera on his shoulder, light on.

“Show time,” I thought.

I placed my last flower but knew I had not seen the last name that I wanted to pay homage to, and I began to cry more noticeably.

The video clip of me quivering that made it to air that evening, between the reporter’s voice-over and the filler camera shots, was, “I’ve run out of flowers. I don’t have enough flowers. There are too many names!”

“You’ve lost a lot of people,” the reporter said, “Do you know how many?”

“I stopped counting at thirty,” I replied, sniffling, “and I haven’t tried to count again.”

“And you’ve run out of flowers,” she said, rather mournfully as fresh tears filled my eyes.

I don’t remember much else. It was pitch black by the time I walked home, wondering what would end up on the air. I called my mother, telling her that she might see me, if not over the supper hour, on the late national news. My voice did not betray the exhaustion I was feeling from having done quite a lot of crying.

Following a report on international observations of the day, which I remember included the unrolling of the giant likeness of a condom, by AIDS activists, down the Eiffel Tower then-local CBC news anchor Bill Cameron introduced the report which included me. Despite my uneasiness with my raw emotions I was quite satisfied with the report.

What remains with me to this day, particularly nice since I came to know Bill only vicariously through his sister as he was dying of cancer, was his reaction coming back on camera from the video item. A fist cupping his chin, he leaned back in his chair, and paused, the silence saying (to me anyway), “Wow”. Since it was me projecting that onto him I took it as a good “Wow”.

Understandably wound up, I would say, I watched the rest of the newscast and then decided to change direction a little by putting put a few Christmas decorations. Slapping a holiday music cassette into the stereo until I was satisfied with the dressing up of the plants in my living room window, I decided to sit down and begin writing a year-end letter to friends and family. Most of all, though, it was a letter for Jim because I wasn’t sure he would be here the next year.

That letter, and those from the next several years, eventually became the first entries to this blog. It began:

It’s dusk. My indoor garden is laced with tiny Christmas lights, some climbing and some right on the floor. Candles are lit here and there, mostly there, while I peck away at this tabletop word processor. Tiger and Blue are snuggling in my mother’s doll-crib, one of The Bay’s loose-eyed 1993 “Charity Bears” is holding a picture of yours truly at the AIDS Memorial, from the Globe & Mail’s front page last summer, and Barbra Streisand’s Christmas album – which I like to call “Babs Does Bethlehem” – is playing in the background. Life is good in this moment.

World AIDS Day 2010 – Stories – 3 – “Kim and Alex” by JPK


Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

The best thing that I can say about Kim at this point is that she blessed the world with her son Alex. He is a beautiful, talented and loving little boy of 11. All those that know him are enriched. All those that know him also know that he will be forever dealing with the legacy of his mother’s illnesses.

Thankfully he was born HIV negative. Kim was HIV+. I do give her credit for complying with the medical advice to receive in vitro treatment for Alex and to have him by cesarean section. She did however use drugs when she was pregnant with him and it is likely he was conceived while Kim was using crack. Alex must pay for that indulgence with a learning disability and possibly many other effects of his mother’s drug abuse as of yet undiagnosed. Are the drug addiction and being HIV + related? Absolutely! The latter was contracted through sharing needles or unsafe sex while high.

And now she is gone. An overdose. It is undetermined if it was intentional or accidental. Regardless, the rest of us are here trying desperately to support Alex, to help him grow and to save him from his mother’s legacy.

I am angry and I write through a veil of tears for all concerned.

World AIDS Day 2010 – Stories – 2 – “This friend living with AIDS who gave me so much…” by Dominique Gauvreau


Each author in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

This is the World AIDS Day, 2010 entry in Dominique Gauvreau’s blog Rencontre sous le Chêne de Mamré (Meeting under the Oak of Mamre):

(Google translation edited by KC)

 

“This friend living with AIDS who gave me so much…”

 

 

There are people who cross our path at random and without knowing just how they transform us.

In the 1980s, a mysterious illness was striking the gay community in Montreal. Acquaintances were dying around me. I was terrified. At that time I was not “out”, essentially living in a gay underground. I hid because I was ashamed of who I was. I hid because I was told again and again that being gay was against nature, immoral, abnormal. Imagine being more affected by what was dubbed the “gay cancer.”

I entered adulthood marked by a childhood in the holy water, where the Catholic Church thought it was the only one which could possibly save me from eternal fire. I was influenced more by the existence of the devil, and fear of damnation, than by a God who loves unconditionally. At this time of my life, I was still marked by homophobic attitudes, having suffered beatings and taunts at school. I was so ashamed that for fifteen years I kept secret a sudden sexual assault in late adolescence.

My silence and my imprisonment in these underground confines led to hidden relationships – dangerous, anonymous, without boundaries and dead to any fear of taking medications, alcohol and street drugs to gild my non-existence. That led to a deep depression. Well-meaning Christians stretched out their hands to heal me, yet told me that marriage was the solution to my very gay problem.

I didn’t get it, seeming to sink further. Naturally! That God rejects and hates gays was well known. I did not deserve to live.

I met Marcel at a party. He told me his life story. He was one of the first I knew who spoke openly about his HIV status. Marcel was a believer and soothed by his faith even though it was very different from mine.

We did not get together too often. We met once by chance walking on Ste-Catherine. Pleased to meet and share some time together, without a pre-arranged date, we went to the chic restaurant “Cristal” in the gay village.

One day as I paced the streets, feeling out of it, at a very low point in my life, religious and social tensions at their lowest, Marcel accosted me with his big smile, hugged me and told me how much he loved me. There was universal love, unconditional. I firmly believe that his actions that day prevented me from throwing myself under a subway train. He was kind of my angel of the day.

Several years have passed since then. Today, I work for GLBT inclusiveness and I am aware of the realities of HIV and AIDS. I’m light years beyond the young man I was at that time. However, I am shocked to see that so much remains to be done in moving toward a society that’s more tolerant and inclusive. Unfortunately, prejudice remains and there is a rise of the religious right and those who would rather see the social exclusion of people with HIV, showing homophobic feelings.

When I see the repercussions in the media of intolerance and hatred on young people who end their lives or who are considering doing so, I ask myself many questions. I have to wonder if anything has really changed in forty years. Some narratives or stories that I hear have disturbing similarities to what I experienced back then. When a character like Benedict XVI speaks of homosexuality as an injustice and against the will of God it is really baseless, ideological bullshit.

Getting back to my friend Marcel, I saw him one fall evening, cold and rainy, in a restaurant. He was letting me know about his next stay in hospital. He gave me his phone number and told me he did not really like people calling it, except me.

After several attempts to contact him, I remained without news. Worried I returned to the restaurant to ask the waitress if she had seen him lately. She told me that he had died.

Every December 1, I think of Marcel and I thank God for having placed him in my path. I think of all those I knew or I know who live with the reality of AIDS. I invite you to do the same and perhaps contribute a donation to an organization or recognized charity.

For my part, in Montreal, I suggest you donate to Cocq-SIDA. I also invite you to learn about the new “Jasmin Roy Foundation” which works to fight against homophobic attitudes in schools. This is another reality which touches me closely and which unfortunately has been topical in recent months.

 

 

"Would we still be friends if I was HIV-positive?"

 

 


Biblical text of the day

Today, the biblical text is not that suggested by Taizé as I usually do.

31 “When the Son of man comes in his glory, and all the angels with him, then he will sit on his glorious throne. 32 Before him will be gathered all the nations, and he will separate them one from another as a shepherd separates the sheep from the goats, 33 and he will place the sheep at his right hand, but the goats at the left. 34 Then the King will say to those at his right hand, ‘Come, O blessed of my Father, inherit the kingdom prepared for you from the foundation of the world; 35 for I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, 36 I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.’ 37 Then the righteous will answer him, ‘Lord, when did we see thee hungry and feed thee, or thirsty and give thee drink? 38 And when did we see thee a stranger and welcome thee, or naked and clothe thee? 39 And when did we see thee sick or in prison and visit thee?’ 40 And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brethren, you did it to me.’

Recontres sous le Chêne de Mamré

World AIDS Day 2010 – Stories – 1 – Excerpts from the Prologue of “Crooked Road Straight: The Awakening of AIDS Activist Linda Jordan” by Tina A. Brown


Each author in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

AIDS didn’t become important to me until somebody I knew died.

I imagine that is also the case for most people in the U.S.

Even now, it is easy for most of us to put our thoughts about HIV/AIDS behind us because of the way the disease was introduced into our society. We were told in the mid-1980s that it was an infectious disease killing gay white men, Haitians and intravenous drug users. I didn’t know anyone who fit those categories. I had read in school about epidemics throughout history and I never expected to experience this sort of pandemic in my lifetime in such a personal way.

I was a rookie reporter when I heard about AIDS for the first time. The TV broadcaster described it as a mysterious disease that was taking the lives of mostly white gay men in New York and San Francisco. The news report sparked my curiosity. But I didn’t think much else about how AIDS would affect me personally until 1986, when one of my colleagues at the Macon Telegraph in Georgia died suddenly.

I was just getting to know this quiet, smart and young black man who worked as a copy editor. Now, he was dead. Though I had volunteered, I hated writing his obituary. I knew so little about this guy’s personal life. The word AIDS never appeared in his news obituary. As far as the public was concerned, my colleague died of a sudden illness, a popular buzz phrase coined when young people, mostly men, died of complications related to AIDS or the human immunodeficiency virus that causes the disease. The funeral home directors whispered AIDS as the cause of death for very few people.

His death was unsettling. It became apparent to me that this disease would not just strike white gay men in their prime. I realized that AIDS might become a silent killer in Black America.

But there was very little visual evidence of HIV/AIDS affecting this part of the population, despite the statistics made available by the U.S. Centers for Disease Control and Prevention in Atlanta in the mid-1980s. I pushed my concern into the back of my mind.

By 1988 I was trying to advance my career as one of seven journalists selected to go to California to develop my skills at the Summer Program of Minority Journalists — now The Maynard Institute — at the University of California at Berkeley. I was assigned to write about the return of the AIDS Memorial Quilt to the Castro district in San Francisco, at the time the epicenter of the AIDS movement in the U.S. The event was one of the most emotional stories I had written. The quilt had traveled across the U.S. and was displayed at the Capitol in Washington, D.C., before arriving in San Francisco. The mayor of San Francisco and other public officials cried as the thousands of quilt panels were unfolded for miles down a city street.

This disease was real, I thought. I had never seen so many people so emotionally affected by one event. Yet as I looked closer at the quilts being paraded down the street, I noticed that there were very few photographs on display of black faces, particularly of women.

I was touched and felt sympathetic for those affected by AIDS, but I felt safe as a heterosexual black woman. My feelings about my personal safety changed five years later when the CDC announced that heterosexual black women would be the next wave of people infected by the virus in the Northeast U.S. I fit that demographic. I wondered quietly whether I could become one of those statistics. That feeling stayed with me when I left my reporting job at the Asbury Park Press in New Jersey for a new reporting position in Hartford, Conn. I promised myself once I got settled that I would write a story about how the black community was responding to HIV/AIDS in Connecticut, especially since so many people in Hartford were infected. I asked my editors: What were the traditional black institutions, especially the churches, doing to help people cope with the disease?

I set out to do that story in 1994. Though in my early 30s, I was naive. My knowledge of the streets and issues associated with poverty were limited. I didn’t grow up in the slums. I had never interviewed sex workers or intravenous drug users, people health officials said were also spreading the virus. I admit now that those people scared me because I had seen too many movies.

As the daughter of African Methodist Episcopal ministers, I took the safe approach to the story and called church leaders in cities that dotted Connecticut. To my dismay, they did not return my calls. Since I was working on the special assignment, I didn’t have time to wait by the telephone. I ventured out into community-based organizations such as the Urban League and health departments in Hartford, New Britain, New Haven and Bridgeport to talk to the professionals who were serving the “at risk” populations.

Within a month, I was walking the streets or getting connected with outreach workers like Buster Jenkins and Mark Little in Hartford. Two church mothers, Gladys Pennington and Elsie Cofield, helped direct my path through New Britain and New Haven. They connected me with black and Latino women who told me their life stories, but were unwilling to allow me to use their full names or to have their faces photographed for a newspaper story. Having the virus was a secret many of them kept from their families; they didn’t want to reveal their HIV status in The Hartford Courant. So many of them and the outreach workers who distributed condoms, clean needles and bleach kits saw my frustration, and they asked me if I had met Linda Jordan, who was quickly becoming an icon in AIDS prevention communities across Connecticut.

I called Linda and she invited me over to her house in West Hartford, a suburb of Hartford. My first interview lasted about five hours. She told me that she was a recovering heroin addict who was volunteering with seven different AIDS organizations in Connecticut. That work earned her the Mary Fisher Foundation’s National Outstanding Caregiver Award in 1993. Linda showed me the posters that she and her daughters and grandson had taken for a public awareness campaign for the Connecticut Department of Revenue and the Concerned Citizens for Humanity.

Her family is believed to be one of the first African-American families in the U.S. to put a human face on the disease. The posters are still circulating the globe. Linda was so open about her story that it struck me as odd that this woman who had experienced a lifetime of tragedies wasn’t keeping it a secret. She didn’t believe in having skeletons. She shared her HIV status and the status of her oldest daughter, Tanya, and Linda’s husband Alvin, who was in prison at the time. I wasn’t prepared to hear all of what she had to share in 1994.

My limited street smarts were obvious. It showed in my facial expressions; Linda laughed about it when we talked years later. Yet she trusted that I could learn enough to write her story. At the time, I was too far removed from the life she had led to understand her resilience. She had been molested, abused and raped before she was 10 years old. She had used heroin by the time she was 18, had married and divorced her childhood sweetheart twice. She stayed with him and bore his children, even though he was incarcerated for most of their relationship. She allowed me to hang around, attend family functions and speaking engagements so that I could learn more.

My story for the Courant, “Fighting AIDS with Resilience: Sense of Unity Blacks Confront Epidemic,’’ captured only small fragments of Linda Jordan’s life story. I felt unfulfilled after it was published in October 1994 and I went back to my regular beat covering a predominantly white upper middle-class community outside of Hartford.

About six months after the story was published, I was in Puerto Rico for vacation. The ocean has always been a place for clarity for me. I remember sitting on a rock on a beach one day. I felt like I had made the wrong decision by moving to Connecticut. I asked God why he had sent me here. What was I supposed to do in Hartford? I left there thinking that once I returned to Hartford, I had to continue my work reporting about Linda Jordan.

I owed her much more as a journalist.

I want to write your book, I told her over the telephone.

When do we start? she responded.

For the next five years, I went to Linda’s house on Maplewood Avenue in West Hartford regularly before I went to work at The Courant. I’m not a morning person, so she made sure that I had coffee and she drank tea. I also brought her my copy of the daily newspaper, and was struck that she was always most interested in the obituary page. She recounted the people that she knew had died of AIDS, had overdosed on heroin or died of other premature deaths because of their lifestyles.

My concern back in the early 1980s that black American women would have to wake up and respond to this disease became clear and present. Like in the early days, very few if any of the obituaries cited the true causes of death when someone died of AIDS. So many people were dying in secret and ashamed. But here I was sitting at Linda Jordan’s kitchen table amazed that she didn’t look sick. She was very much alive. She was not afraid to reveal her HIV status and the diagnosis of her husband and her oldest daughter. She strongly believed if those in the HIV/AIDS community stopped hiding their status, more people would accept that the disease was claiming so many others and leaving their families to cope in secret. She told her story to anyone who would listen, hoping and praying that it would be the catalyst for other women who had gone down her crooked path to change their lifestyles.

“Crooked Road Straight: The Awakening of AIDS Activist Linda Jordan” was written so that people of all races, ages, class and generations could reflect on their lives, their past sins and troubles and come to grips with things that hurt them. Linda had to forgive a lot of people because she knew that God had forgiven her. Hers is a story about choosing life despite the odds.

There are a lot of lessons to be learned from Linda’s story. She accepted the roots of her pain that led to her addictions. Once she accepted her faults, she learned to live.

This book is a dream come true for both of us.

Over time, my assignment at The Courant changed. In 1998, I started writing about crime, courts and social trends in Hartford, one of the poorest cities in the nation. My time in Hartford was not wasted as I became able to write Linda’s story with authority. I was here to see the housing projects where Linda grew up before the federal government tore them down. I witnessed the impact of the AIDS epidemic among the intravenous drug community in this city and others. I saw how welfare reform changed the life of a third-generation welfare recipient who moved into the world of work not just as an AIDS outreach worker, but as a factory worker once the monthly stipends she received for most of her life dried up.

Linda’s story is about living with AIDS. Her spiritual development and belief in God once she forced her way into drug treatment taught her that she could live without the medications that so many people depend upon today. Her unfilled wish was that all religious leaders, especially those in the black church, would stand and help those with the virus who were lost and forgotten. She believed that God saved her from killing herself and AIDS was just something she had to live with. She used her life story to show others that change is possible.

This story affirmed my reasons for becoming a journalist 23 years ago. I chose this profession to tell stories about the people in our society who are largely ignored by the general public. Fortunately, my mission has placed me in unfamiliar situations and enabled me to grow up and reach inside myself to find a common ground with most of the people I’ve interviewed.

www.crookedroadstraight.com

A call-out for stories (yes you!) – World AIDS Day 2010


First of all, this is not a contest.  Every story will be published on my blog (and re-posted to Facebook & Twitter via links) in the order in which I receive them.

You may send them to me within the body of an email, or by attaching a document, and I will post them.  I expect they would be too long to send as a simple comment to the blog. The title of each blog post will include your name (or any part thereof, or not at all, should you wish to remain anonymous).

The story, as specific as possible (because it would be easy to lump many stories into one, I know), would be a response to, “Please write a story illustrating how HIV/AIDS has impacted your life.” I would expect everything from happy to sad and/but HIV/AIDS might only be a part of a bigger story.  In the narrative form, such a story would have a beginning, a middle, and an end and would include dialogue.  “The end” does not mean death, necessarily, as it could simply be the end of the particular anecdote that you are recounting.  It could be written from any point of view, in the first-person or otherwise.  Obviously, in light of the approach of World AIDS Day, I would ask that it be a true story.  That being the case, you may want to change names of others, both living and dead, or limit yourself to first names only.  That’s up to you.  It’s a reminder that one’s absence-through-death does not take away what may have been one’s wish in life for anonymity – be it an issue of stigma or a feeling of vulnerability on the internet.

I hope that you’ll join me – and feel free to pass this on to others you think might be interested.  By being published on my blog your work would be part of the Creative Commons copyright there ( http://myjourneywithaids.wordpress.com ).

Please let me know if I might expect something from you.  If this works, we’ll try to make it an annual event among friends!

Thanks,

Kenn (my email has been modified to minimize phishing expeditions.)

 

kenngchaplinAtgmailDOTcom

Tomorrow is World AIDS Day


Tomorrow, December 1, is World AIDS Day. Let us remember that HIV/AIDS remains an issue the world over 364 other days of the year.

Promising treatments have extended the survival of people in the wealthiest nations of the world but, where available, are only starting to have an effect in poorer nations.

Canada’s promise to make cheaper generic drugs more accessible to poor countries is a law on the books but the medicines have not been rolled out. This is unacceptable. Nothing makes people with HIV/AIDS in rich nations more deserving of treatment than those in poor countries.

World AIDS Day – Remember and then act


World AIDS Day has, for me, often been a day of reflection on the lives lost in my circle of friends – and there have been many.  A visit to Toronto’s AIDS Memorial reinforces that fact.

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However, it is the fact that there are fewer friends dying nowadays – fewer names being added to the Memorial each year – that fires my passion for those who still only dream of receiving the medications we have. 

By “we” I mean those of us who are connected to the health care system.  There are still far too many, close to home and abroad, who are not.  IV drug users are too often seen as disposable, their needles not so much.  The rate of infection among our First Nations peoples, directly related to the way successive settlers’ governments have treated them, is a national disgrace.  As for the homeless, who really knows?  Toronto’s Daily Bread Food Bank, and others elsewhere I am sure, never seem to have enough in stock to meet growing needs. When people cannot eat well, no matter where they live, caring for other aspects of health loses its priority.

We still have much to do.

Canada’s Parliament, in the sunset days of Jean Chrétien’s tenure, passed federal legislation which would allow generic drug makers to manufacture cheap copies of expensive patent-protected medicines, which could then be sent to the poorest of AIDS-affected countries. This legislation has remained caught up in red tape for years (it was even renamed by the Conservative government so as to remove Chrétien’s name – that was important, right?) with the result that not one generic drug has left Canada.  (Today’s Star editorial has more to say, even some positive things, about Prime Minister Harper’s AIDS efforts.)

I am no more worthy or deserving of life-saving medications – available to me through a combination of private and public insurance – than those who do not even have access to TB cures, much less the ‘cocktails’ we take for granted. World AIDS Day allows us all to raise our voices over this injustice.

Annie Lennox’s SING – World AIDS Day 2007


(OXFAM)

Today, on World Aids Day, Oxfam Global Ambassador Annie Lennox is launching SING, a new charity single calling on women to ‘sing out’ around the issues of HIV and AIDS.

Featuring the vocal talents of 23 major female artists, including Angelique Kidjo, Madonna, Melissa Etheridge, Dido, Pink, Shakira, Fergie and Céline Dion, the single is aimed at raising international awareness of the impact of HIV and AIDS in South Africa, particularly the epidemic’s toll on women and children.

Money raised by the single will go to South African HIV and AIDS organisation Treatment Action Campaign (TAC). Oxfam has partnered with TAC for a number of years, helping to fund the program and has an ongoing strategic alliance – supporting workshops and the production of media around issues related to HIV and AIDS.

“I’ve seen the devastating effects that HIV and AIDS has on families and communities, and I know we won’t overcome poverty unless we win the fight against AIDS,” said Annie Lennox. “That’s why I’m working with organisations like Oxfam to demand that rich and poor country government’s live up to their promises and deliver healthcare for everyone, especially women.  I’ve written a song, called SING, about the AIDS crisis – watch it today and be part of the fight against AIDS.”

Featured on the single are the members of TAC’s choir The Generics, whose 2001 song on preventing mother-to-child transmission, Jikelele, provides the outro to SING. TAC has become the leading civil society force behind HIV and AIDS treatment, prevention and care in South Africa.  Since its inception in 1998, TAC has held government accountable, campaigned against official aids denialism, challenged the world’s leading pharmaceutical companies to make treatment more affordable and cultivated community leadership on HIV and Aids.

Oxfam works directly with people affected by HIV and AIDS, with organisations such as TAC. Oxfam also lobbies for change through campaigns such as Public Services – For All – Fight Poverty, pressing governments to provide access to clean water, sanitation, health care and education that are essential tools to fighting HIV and AIDS.

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