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Articles tagged with: John McCullagh

Dec19

John McCullagh interviews Lisa Power on HIV and aging

Wednesday, 19 December 2012 Written by // John McCullagh - Publisher Categories // Aging, OHTN OHTN/PositiveLite.com, Conferences, Features and Interviews, Health, Treatment, Living with HIV, John McCullagh, Ontario HIV Treatment Network

What should service providers be doing differently to help people living with HIV stay healthy and active into old age? At the recent OHTN Research Conference in Toronto, John McCullagh put this question to Lisa Power of the UK’s Terrence Higgins Trust

John McCullagh interviews Lisa Power on HIV and aging

Thanks to ART, those of us with HIV are now living much longer. But aging with HIV is not without its challenges. In addition to the normal aging process, people aging with HIV face complications associated with the virus, side effects of treatment and high rates of comorbidities with conditions such as cardiovascular disease, cancer, renal disease, arthritis and osteoporosis. And often we experience social isolation and financial challenges as well. 

So what should service providers be doing differently to help people stay healthy and active into old age? I put this question to Lisa Power, policy director at the Terrence Higgins Trust,  the UK’s oldest and largest AIDS service organization. Lisa was in Toronto recently to participate in a panel discussion at the Ontario HIV Treatment Network’s annual Research Conference that discussed some of the strategies to support HIV-positive people as we age. 

You can see my interview with Lisa in the video clip below. You can also view Lisa's conference presentation itself, and indeed that of other members of the panel, here.

Dec04

posterVIRUS 2012

Tuesday, 04 December 2012 Written by // John McCullagh - Publisher Categories // Art, Community Events, Activism, Arts and Entertainment, Launches, Events, Features and Interviews, Health, Legal, Living with HIV, Sex and Sexuality , John McCullagh

John McCullagh talks with AIDS ACTION NOW’s Jessica Whitbread and Alex McClelland about the 2012 posterVIRUS project in which artists and activists collaborated in producing posters to respond to current issues facing people living with HIV.

posterVIRUS 2012

In honour of The Day With(out) Art, AIDS ACTION NOW! (AAN) last week launched at the Art Gallery of Ontario (AGO) eight new collaborative activist art works as part of the posterVIRUS project. They are being plastered across the streets of Toronto while being simultaneously launched online via AAN’s posterVIRUS Facebook and Tumblir pages. 

I had the opportunity at the AGO launch to catch up with posterVIRUS curators Jessica Whitbread and Alex McClelland and to chat with them about the event. 

John McCullagh: In honour of The Day With(out) Art, AAN has launched eight new posters as part of the 2012 posterVIRUS project. So what’s The Day With(out) Art? 

Alex McClelland: The Day With(out) Art happens every year around World AIDS Day to recognize artists working in HIV. It was begun in the late 1980s by artists and art institutions to acknowledge the impact that HIV and AIDS has had on the artistic community. Later, the bracket on the “out” part of “without” was added to recognize both the loss of individuals and that people are still living with HIV and producing art. 

John: And posterVIRUS? What’s that all about? 

Jessica Whitbread: posterVIRUS is a project that started within AAN to bring art and activism together to create a collective messaging that’s framed in art. What we try to do is look at issues that are silenced or less talked about within the HIV mainstream discourse, to bring those issues out into the open in order to provoke discussion.  

John: In your curatorial statement, you say that you’re making new assertions about HIV and AIDS, that you’re inverting the hierarchy. What do you mean by that? 

Alex: Well, as two relatively young people living with HIV, we want to assert a different voice in the HIV world. In the beginning of the epidemic, the HIV response was led by activists. But subsequently, the response has become increasingly institutionalized and driven by academics, experts, doctors, public health agencies. And these are the people who today are driving how we talk about HIV. We wanted to put that discussion back in our hands and make new assertions about what it’s like, living with HIV in the 21st century. How HIV has changed, how living under a regime of neo-liberalism constrains those of us living with HIV. As well as to address increasing criminalization and state violence that’s actively working to destroy us. 

John:  And activist art, of course, has a long history of transforming a culture, of changing politics, and it then becomes the artist who leads the discourse. So perhaps we could look through some of the posters and talk about what kind of conversations you’re wanting to provoke through them. 

Alex: We originally had seven posters and then the supreme court decision on the criminalization of HIV non-disclosure came down. As people living with HIV that really took a blow to us, emotionally and on lots of other levels, so we asked Ryan Conrad, one of the artists who’d already made a poster, to do another one related to the supreme court decision. It resulted in his Fuck the Supreme Court, with the footnote Condoms and low viral load required by law, which acknowledges our anger at that decision. 

Jessica: Jessica MacCormack’s Hey Girl I’ll Tell You When I’m Ready is, I think, quite meaningful because it looks at the complexities and the difference between disclosure and aggravated sexual assault which the criminal justice system lumps together when, in reality, they are completely different. 

Alex: Micah Lexier, a well-known text artist-based artist, worked with AAN veterans Darien Taylor and Eric Mykhalovskiy on the AAN poster, the AIDS Action dot dot dot poster, on treatment access:  AIDS Action If you Live in the City, AIDS Action If you Take Control, etc. The intent is to address some of the things that enable or constrain access to medicines. It also takes us back to our roots in talking about treatment access, which was one of the founding principles of AAN. 

Jessica: Also it’s not just a message about treatment access because it also critiques the privilege that it takes to be engaged in activism. Not everyone has the time or the supports to be activists. 

Alex: Then we have the Ryan Conrad poster called Working Conditions: exposure / disclosure / stigma / criminalization. Ryan wanted to do something to address the issue of male sex workers, particularly in light of the upcoming supreme court hearing around sex work. And so he highlighted some of the conditions surrounding male sex workers, which is a population that has often been overlooked in the sex worker rights discourse. 

Jessica: It’s interesting because this poster, although it’s more suggestive than explicit, got Alex and posterVIRUS banned from Facebook for a number of days and then other people who promoted it and put it on their wall also got letters of warning from Facebook. So this one was highly censored. 

Alex: Which is interesting because when you look at Facebook there’s lots of groups that are very sexually suggestive but this poster was flagged, no doubt, because we’re activists and it’s queer. 

Jessica: Then there’s the spacesuit poster. This one was really fun because it was actually based on something that was said on a date: I don’t need to wear a spacesuit to fuck you. Among queer women there’s no discourse around HIV. Like it doesn’t even happen. Though there’s an insistence from the mainstream, in sexual health workshops, on “wear gloves, use dental dams, wrap your body in latex”, even though queer women have the lowest rates of HIV transmission. But there’s this folk law going around saying it can happen. 

Alex: So the poster takes the messaging away from public health who drive the regulation of women, queer women, queer people, regulating their sexuality. 

Jessica: Another poster is the one on prisons, Prisons Kill, Prisons Kill. It was started when the artist Neal Freeland, working with long-time prison right activist Giselle Dias, was actually in prison. It says: Canada’s solution to homelessness, drug use, mental health, HIV/AIDS...Lock ‘em up till they die! I remember we had conversations about that, wondering if it was too much, but Neal said no because that’s what’s happening, it’s important to me and it needs to stay. So we said, you’re the artist, this is your experience, go with it. 

John: Then you’ve got the Silence=Sex poster. 

Alex: That’s by Jordan Arseneault. He has a poem to accompany it, that he read at the launch tonight, that talks about the complexities of disclosure for people living with HIV. The poster also explores one of the things that we’re trying to do with posterVIRUS, which is to call back the past iconography of AIDS activism by referencing ACT UP’s Silence=Death poster. 

John: This has been an extraordinary year with the remounting of Larry Kramer’s Normal Heart and the release of a number of movies about the early history of the AIDS movement: We Were Here, United in Anger, How to Survive a Plague, Vito. Does this presage a new era of AIDS activism, do you think? 

Jessica: I think so, yes. There was a huge lull for a number of years and there wasn’t a lot going on. And even when we did posterVIRUS last year there were equal amounts of excitement and pushback. People told us you can’t say Fuck positive women or that I party, I bareback, I’m positive, I’m responsible. But we’re like: What do you mean, we can’t say that? These kinds of discussions, these things are happening, and I think that using art, there’s an honesty you can put into it. Art’s really playful, unlike a public health campaign. Artists are not restricted by funding, we’re not restricted by being on the tight leash of the government or of donors. We’re doing it because we’re reflecting what’s actually happening in our communities. 

Alex: We’re at an inspiring moment when people are remembering the history and recalling the origins of our movement but we’re also at a really, really hard time in our response because we’re constrained in terms of what we’re able to say as HIV activists. We don’t have a strong activist response in Canada, we have a highly institutionalized response, which does a lot of amazing work, but we need more social change work to happen. 

John: Thanks, Jessica and Alex, for taking the time to talk to PositiveLite.com about posterVIRUS 2012. 

Jessica and Alex: You’re welcome, John.

This interview has been condensed and edited.

You can see all the posters and read the artists’ statements at AAN’s posterVIRUS Tumblir page. 

Nov26

Toronto PWA: 25 years of service

Monday, 26 November 2012 Written by // John McCullagh - Publisher Categories // Community Events, Activism, Events, Features and Interviews, Living with HIV, John McCullagh

In a video interview with PositiveLite.com, Toronto PWA executive director Murray Jose reflects on his agency’s 25 years of serving people living with HIV.

Toronto PWA: 25 years of service

In 1987, a support group of people living with HIV formed the Toronto People with AIDS Foundation (Toronto PWA).  

Although a great deal has changed over the past two-and-a-half decades, Toronto PWA has adapted as different needs have emerged. At its heart though, the agency is all about serving the community, struggling against HIV/AIDS and creating possibilities for people living with the virus. 

In his video interview with me below, executive director Murray Jose reflects on the growth and influence the organization has had and speaks about the challenges that still lie ahead. 

Nov23

The 2012 Ontario AIDS Network Honour Roll Awards

Friday, 23 November 2012 Written by // John McCullagh - Publisher Categories // Activism, Events, Health, Living with HIV, John McCullagh

The annual OAN Honour Roll Awards acknowledge the long-term and consistent contributions of individuals or organizations that use their experiences, skills, resources and voices to champion the cause of HIV/AIDS in Ontario.

The 2012 Ontario AIDS Network Honour Roll Awards

Each year since 1996, the Ontario AIDS Network (OAN)  has recognized outstanding leadership and achievement within the HIV/AIDS movement in Ontario through its Honour Roll awards. The Honour Roll acknowledges the long-term and consistent contributions of individuals or organizations that use their experiences, skills, resources and voices to champion the cause of HIV/AIDS in Ontario. 

The OAN is a coalition of people living with HIV and AIDS, AIDS service organizations and AIDS service programs, who work collectively to provide a just, effective response to HIV and AIDS, improve life for people infected with and affected by HIV and AIDS, and prevent the spread of the virus. 

This past Saturday, the OAN inducted three people into its Honour Roll. Each of them reflected for PositiveLite.com on what being inducted into the Honour Roll meant to them. You can see and hear what they had to say in the short video at the foot of this page. 

The Person with HIV/AIDS Leadership Award honours a person with HIV/AIDS who openly demonstrates resilience, providing inspiration and leadership, advocating for all people with HIV/AIDS. Recipients of the award display leadership in the face of challenge, inspire community action, and reinforce the principles of community values, while aspiring to reduce stigma and discrimination. 

The 2012 award in this category went to Rob Newman. Rob, a contributor to PositiveLite.com, was diagnosed in December 1990, along with his partner Kim and two of their three young children. The family went public nationally with their HIV diagnosis to bring awareness to children and families living with HIV/AIDS. Sadly, Kim died only two years later and their eldest son Robby soon afterwards. Still, the family unit marched on. Their eldest child, Jennifer, went on to win the Ontario Junior Citizen of the Year award for her work in the AIDS movement and their youngest son Tom spent time working in Johannesburg at an orphanage for children and mothers living with HIV/AIDS. Today, Rob works as a peer support worker at the Regional HIV/AIDS Connection in London, Ontario and attributes any accolades for his work in HIV/AIDS to the bond he shares with his two children and their passion that has changed, enriched and directed their lives. 

The Community Partners Award recognizes an individual or organization that works or volunteers directly or indirectly in the provision of community support through the provision of resources, research or treatment to improve quality of life and dignity for people living with HIV/AIDS. 

This year, the award in this category went to Dr Barry D. Adam. Barry is a professor of sociology at the University of Windsor and a senior scientist and director of prevention research at the Ontario HIV Treatment Network (OHTN) with a mandate to draw together researchers, policy makers, and community-based organizations in building province-wide capacity in effective interventions for HIV prevention. With an extensive background of community-based research into HIV prevention and issues of living with HIV, Barry’s current work includes: HIV prevention and sexual health programming for HIV-positive men; HIV vulnerability among Spanish- and Portuguese-speaking men who have sex with men; the impacts of criminal prosecutions for HIV exposure and transmission on people living with HIV; the sexual health vulnerabilities of transmen; and the impacts of the introduction of marriage on same-sex couples. He also leads a multidisciplinary collaborative partnership combining molecular epidemiology, sociology, and clinical practice to bring multiple tools to bear on advancing HIV prevention. 

The Caregivers Award is bestowed upon an individual or organization that works or volunteers in the direct provision of supportive care for people living with HIV/AIDS through the delivery of front line service or treatment. Recipients of this award inspire hope and dignity with compassion and respect. 

This award this year went to Robin Rhodes. Born and educated in the UK, Robin became involved, in the early 1980s, as a volunteer with the London Lighthouse AIDS Hospice, the first of its kind in the world. It also offered many forms of drop-in support facilities for people living with HIV/AIDS. Robin has been a staff member of the AIDS Committee of Toronto (ACT) for 13 years, currently as community support programs coordinator. He is responsible for coordinating and overseeing a variety of client-centred  programs and volunteers, manages a client caseload, and organizes seven community health forums annually. Robin sits on several committees, both internal and external to ACT, and participates in an advisory capacity on a number of community professional committees and working groups. For the past five years he has, and continues to be, a mentor with University College, University of Toronto student mentorship program, specifically in sexual diversity.

Nov02

Movie review: How to Survive a Plague

Friday, 02 November 2012 Written by // John McCullagh - Publisher Categories // Activism, Arts and Entertainment, Gay Men, Health, Living with HIV, Population Specific , Sex and Sexuality , John McCullagh

John McCullagh reviews the documentary movie that tells the story of how AIDS was turned from a death sentence into a chronic, manageable condition.

Movie review: How to Survive a Plague

As PositiveLite.com founder Brian Finch recently pointed out,  it’s difficult for anyone who didn’t live through the first decade of AIDS to truly grasp the horror of those dark times, when the gay community, so quickly following on the heady days of “gay liberation”, was decimated by HIV.  

But by remarkable good fortune, those early “plague years” also saw the emergence of the video camcorder. So it was that the mobilization of the gay community in the face of death was recorded for posterity by media-savvy activists. This footage has been distilled into a remarkable series of documentary movies that have appeared this year, most of which we’ve reviewed in these pages (see the Related Articles links at the foot of this page). 

One doc that we haven’t reviewed until now is How to Survive a Plague, which is opening in Toronto today at the Bell Lightbox, in Vancouver on November 7 and throughout the fall in other Canadian cities. It was released in the US on September 21. I was fortunate to catch a screening last spring at the Toronto Inside Out LGBT Film Festival.  

This documentary can be seen as a sequel to Larry Kramer’s play The Normal Heart, currently being reprised in Toronto, which dramatized the story of the first AIDS activists who struggled to understand what was happening to them and their community and who founded New York’s Gay Men’s Health Crisis, the world’s first AIDS service organization. 

How to Survive a Plague picks up the story in 1987, six years into the epidemic when half the gay men in New York’s Greenwich Village were HIV-positive. With no drugs to treat the disease, AIDS is nearly 100% fatal. These men decided that they were no longer going to be satisfied with asking politely for treatment options and patient rights and so founded the AIDS Coalition to Unleash Power (ACT UP). In this doc, we have an inside seat as we watch how these men and a few women responded to the cataclysmic crisis of AIDS before effective treatment became available. 

The story is told through the experiences of a few key participants, notable among them Peter Staley, a closeted Wall Street bond trader when he was infected with HIV in 1987 at the age of 26. Given two years to live, he joined ACT UP, became a full-time AIDS activist and campaigned for increased research spending. 

Staley is one of the lucky ones because, remarkably, he didn’t die (now 51, he was present at the Toronto LGBT film festival screening I attended). Sadly though, most of those featured in the doc didn’t survive. Notable among them was Bob Rafsky, a married man and father who came out later in life at the start of the epidemic. Like so many in that era, he fought to combat indifference from government and big pharma and active hostility from politicians and church leaders such as President Ronald Reagan, Senator Jesse Helms, Pat Buchanan and Cardinal O’Connor, the archbishop of New York. Even though he knew he was going to die, he fought to the bitter end so that others (including all of us who live with HIV today) could survive.  

There is some remarkable footage in the documentary. Not only do we have an inside peek at strategy discussions at ACT UP meetings and the usual rallies and demonstrations but we also witness activists dumping the ashes of their loved ones on the White House lawn, the disruption of a mass at St Patrick’s Cathedral, and, in a moment of good humour, the covering of the home of Jesse Helms with a giant condom. Perhaps most poignant of all, though, we see activists carrying the bodies of their loved ones to the reelection campaign headquarters of President George H.W. Bush and holding a funeral on the doorstep. 

Eventually the tension between those who advocated direct political action and those who wanted to sit down with big pharma to search for effective treatment produced a split among the activists. It resulted in Peter Staley leaving ACT UP and founding, in 1992, the Treatment Action Group (TAG). He was among the activists who self-educated themselves about virology, immunology, cellular biology and pharmacology. This knowledge eventually got them a seat at the research table. It was they who ensured that the mistakes of the early efforts at treatment, such as the enormously costly drug AZT, were not repeated. 

These efforts led directly to the discovery of protease inhibitors which, starting in 1996, changed the face of HIV from a death sentence into a chronic, manageable disease. And it was TAG that wrote the trial protocol that brought these effective drugs to the market. 

Back here in Canada, and specifically in Toronto, our own home grown activist group, AIDS Action Now! (AAN), followed in the footsteps of ACT UP. As veteran activist Tim McCaskell has written:

“While AAN! never developed civil disobedience to the high art ACT UP did in New York, we did disrupt question period in the provincial parliament. We chained ourselves to the furniture in the offices of the minister of health. We held massive die-ins at the Pride parade. We disrupted the NDP convention when Bob Rae was about to speak. And as a result, we won the Trillium Drug Program so that nobody in Ontario should have to get sick or die because they can’t afford medicine. Without ACT UP’s example, I doubt that any of that would have happened.”

How to Survive a Plague is the story of heroism and perseverance. All of us who are living with HIV today are the beneficiaries of the activists portrayed in this remarkable documentary. As Staley says: “...a brave group of people stood up and fought, and in some cases died, so that others might live and be free”. 

This is why activism is important and why this documentary movie is essential viewing for every gay man. 

How to Survive a Plague (U.S., 2012). Directed by David France. Released in Canada by Mongrel Media. 120 minutes.

 

Oct17

Medal Winner Denise Becker

Wednesday, 17 October 2012 Written by // Denise Becker - Positive Life B.C. Categories // Activism, Current Affairs, Women, Living with HIV, Population Specific , Ms. Crimson Lips

PositiveLite..com writer Denise Becker with her thoughts on what it means to be honoured with the Queen Elizabeth II Diamond Jubilee Medal.

Medal Winner Denise Becker

This year has been full of festivities marking the 60th year of the Queen’s succession to the throne. One of the ways that the Government of Canada decided to honour the Queen for her years of service was to mint 60,000 Diamond Jubilee Medals that honoured significant contributions and achievements by Canadians. I was honoured and extremely surprised to be named a recipient. 

When you live in England, the value of the monarchy is instilled in you at an early age. I remember sitting on a stool up at the kitchen “counter” or island as it is now called; my father was trying to get me to eat some last spoonfuls of porridge and I had my mouth firmly clamped shut... enough was enough! He was trying tricks like “open the tunnel, here comes a train”, with no reward... but then he said the magic words, “one more for the Queen!” Immediately, I knew it was my “duty” to open my mouth, how could one refuse the Queen? 


You see, that is what the Queen means to many English children and to the public at large. The only way I can describe it is that she is like a well-respected grandmother. Each Christmas, we would gather around the television in the morning to hear the Queen’s message. My parents looked grave and listened intently but to be honest, I rarely paid attention to what she said - we just knew we were “expected” to sit and listen - no questions just quiet reflection... and then my father would say: “is that turkey in the oven?” 

This is the world I was brought up in. 

My father wrote to me once when I had moved away from my home town to say he had managed to “nab” a job as pass inspector to the Royal Enclosure at the Ascot horse racing course. We were all incredibly excited. He, a mere mortal, would be checking seating tickets of the elite! We loved his stories of who he had seen and how they had behaved. Obviously, no need to check “you know who!” 

Then, when I emigrated to Canada, my father wrote by air mail and told me he had been invited to a Garden Party at Buckingham Palace. He was a member of the Executive of the National Union of eachers and had received an invitation in the mail. We were elated and he sent me a copy of the invitation. 

You can see... we were totally smitten with the Queen... I have to say that we looked up to her more than the Prime Minister. We felt that she was the representative of England. 

With that prequel, when I heard that I would receive the Diamond Jubilee Medal, I was very emotional... for three reasons. 

First, to somehow be tied to the Queen’s sixty years of service and awarded a medal celebrating it, is an incredible honour for any English person because we know she has carried out her duties in such a emarkable way. 

Secondly, when I came to Canada, I was so grateful to be allowed in this country, to be able to live in such a beautiful place, with a diverse and accepting population, where someone’s lower economic status or race would not be mocked ruthlessly, as was still the case in England. To receive a medal from my caring and loving “foster” country meant the world to me. 

Lastly, in 1996 I had been infected with HIV for seven years. I was finally diagnosed in 1994 and had been hiding my illness, listening to people around me insanely talking about those with HIV without them knowing the truth or the facts. I had to decide whether to carry on my life in secrecy, with just a few people knowing, or whether I cared enough that people learn the truth and what their empty-headed words meant to me, a person who was infected with the virus and whose family was living every day with their comments.

Now, I know, it hasn’t exactly worked out as planned!.. but there have been some amazing changes and more people do care... and, in fact, incredibly, there is often too much apathy and some even think the pandemic is over! 

But in the last week, we had terrible news from the Supreme Court that got the ranters raving and standing on their soap boxes again: 

“Those people out there trying to infect us... let’s segregate them... I hope they all die, they deserve it!”

I have to say I’m tired... tired of saying time and time again: 

“How about thinking before you start typing or opening your mouth? How about considering the  terrible challenges people already face living with this disease? How about finding out the facts, the science, the truth?”

But then, there is the Medal, and it makes me feel that facing these type of people may not change their ignorance but it does say something about who I AM. It says: I will not lie down while you talk rubbish; I will not stand idly by while you treat people with an illness in a miserable way; and I will not stop educating people because maybe someone, just one person, will “get it”. And if that happens then it may be worthwhile. If I get a Medal then my conscience can reaffirm that I’m doing the right thing.

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