The Gardiner Museum of Ceramic Art, in partnership with the Toronto Community Hep C Program (TCHCP), invited people with lived experience of hepatitis C to take part in an art project called The Face of Our Story. In that project, clay tiles depicting stories of lived experience would be displayed at the museum on World Hepatitis Day, July 28, 2016. This is the story of Signe and Tom who participated in the event.
The day arrived when we met with museum staff, were given a tour, and the project was explained to us. We were nervous. We were proud to be part of this experience, but at the same time unsure of our surroundings and what was expected of us. None of us had ever put on an art show in a museum. We spoke in hushed tones and experienced a feeling of reverence as we saw the beautiful work of other artists. We exchanged glances and thought, “Uh oh! What are we doing here?”
British Columbia, Vancouver Island in particular, is in the midst of health tragedy that many of us find hard to describe. In one sense, we can trace the beginning of this crisis to Thursday, April 14th, 2016 when the chief medical office, flanked by the B.C. Minister of Health, declared a public health emergency to address what had already been four terrible months of overdose-related deaths. Since then, I have been privy to receiving periodic updates from the B.C. Coroner Service on the ever-climbing death toll—the most recent post released mid-September.
On a personal note, this ever-escalating human tragedy started for me on December 21st, 2015, three weeks after the Royal Jubilee Hospital in Victoria had stolen from their premises what has since been described as the largest theft of fentanyl in the history of the Vancouver Island Health Authority. On that afternoon of December 21st, the body of a much-liked client was discovered in a parkade less than a block from the region’s largest needle exchange. He died of an overdose.
“CWGHR,” I responded to my new friend at the 2016 International AIDS Conference in Durban, South Africa. I pronounce our acronym like, “Quigger.”
“Oh, I’ve never heard of Quitter.”
“… that’s because the name is actually, CWGHR”.
Picture it … Quebec City, 1998, thirty people with diverse interests, identities and professions meet to discuss the idea of HIV and rehabilitation for the first time. All were curious, but unsure of the connection between rehabilitation and HIV prevention, treatment, care and support and the role they could play. There the Canadian Working Group on HIV and Rehabilitation (CWGHR) was born! As people were no longer expecting to die of AIDS, this group of pioneers could see that rehabilitation – in a broad sense – was key to enabling people living with HIV to not only survive, but also thrive.
Lack of access to HIV treatment and care among other complex factors contributes to these alarming rates: in many rural or remote areas, HIV-specific services are simply not available, or the small size of the community creates concerns around confidentiality for those accessing care. Indigenous people in Canada — many of whom are surviving a legacy of colonization and the intergenerational effects of residential schools — continue to experience systemic discrimination and extremely high rates of incarceration. In this context, the criminalization of HIV non-disclosure may be perceived as yet another form of institutionalized violence and discrimination, amplifying the negative impact of the HIV epidemic on Indigenous communities.
Plusieurs d’entre vous ont possiblement observé les fluctuations qui se produisent dans le mouvement communautaire, au gré des percées médicales et scientifiques, des priorités, du militantisme communautaire ainsi que des forces plus globales d’ordre politique, social et économique. Depuis plus de vingt ans que je travaille dans le milieu communautaire et y fais du bénévolat, je cherche à m’ancrer dans quelques fondements bien solides, pour donner une base stable à mon travail. Le lien essentiel entre la santé et les droits humains. La nécessité de fonder les politiques, programmes et services sur les données probantes et l’expérience vécue. De même que l’engagement à la justice sociale et une attention sérieuse aux voix des personnes les plus touchées. C’est pourquoi j’ai signé et appuyé la Déclaration de consensus canadien sur les bienfaits de santé et de prévention associés au dépistage du VIH et aux médicaments antirétroviraux contre le VIH. La Déclaration de consensus mise sur ces mêmes fondements afin de jeter les bases d’une réponse à l’épidémie du VIH qui soit exhaustive, holistique et dirigée par la communauté alliant le traitement et la prévention du VIH ainsi que la santé et les droits de la personne.
By Sarah Flicker and the Native Youth Sexual Health Network
Taking Action II is a community-based action research project about building and supporting Indigenous youth leadership in the HIV/AIDS movement. We are a group of Indigenous youth leaders, Indigenous community-based organizations and university-based researchers. We wanted to create awareness around HIV, sexual health, and decolonization in First Nations, Métis, and Inuit communities across Turtle Island (also known as Canada).
In Taking Action I, we worked with over 100 youth in six Indigenous communities across Canada to make art about the links between HIV and colonization. We did this as a way of broadening the conversations about HIV – to move away from the individual shame-and-blame discourse. We wanted to help communities understand and respond back to all the structural factors that have conspired to make them vulnerable to HIV: racism, poverty, land theft, residential schools, loss of language/culture, epidemics of addiction, the Sixties Scoop (the practice of taking Indigenous children and placing them in foster homes beginning in the 1960s) and ongoing child welfare involvement, incarceration, etc. Youth created a lot of amazing art that took up these themes. They loved our workshops and asked for more opportunities to get together with youth from other communities.
Le Blogue de CATIE présente des perspectives et opinions des personnes et organismes qui travaillent ou collaborent bénévolement à la réponse du Canada au VIH et à l’hépatite C.