Getting the message out about HIV/AIDS
It all began with Baby Larry. Caring for the six-week-old started Jan Cibart on a remarkable journey of discovery about HIV/AIDS. It is a journey that has taken her to remote rural villages in southern Africa and into aboriginal communities much closer to home. Most recently, Cibart travelled to Geneva to represent Canada on an International Labour Organization (ILO) tripartite committee to address HIV/AIDS in the workplace.
Larry was the first of many young HIV-positive patients Cibart was assigned to while she was a home care nurse with Children’s National Medical Center in Washington, D.C. The Regina native had gone to the U.S. in 1990 after layoffs affected her position in the pediatrics unit of the Regina General Hospital.
HIV/AIDS was still a relatively new phenomenon in North America, and Cibart didn’t even know what the acronyms stood for. “I thought it was a gay man’s disease,” she admits. “I was embarrassed that I didn’t know more about it. Larry’s mom had so many questions I couldn’t answer. During the year and a half that I looked after him, the family and I had to learn about HIV/AIDS together.”
In 1994, Cibart returned to Regina — the location of the Wascana Institute of Applied Arts and Sciences (now the Saskatchewan Institute of Applied Science and Technology), where she had received her diploma. She took a job with what is now called Regina Qu’Appelle Health Region Home Care and has remained in home care nursing ever since.
Cibart wasn’t alone in her ignorance about HIV/AIDS. “The public and the medical staff had very little knowledge or training about HIV then,” she says. “It made me want to get the facts out about this misunderstood disease.” She was selected as one of 35 nurses from all over Canada who learned how to educate people in their community about HIV/AIDS through a Victorian Order of Nurses mentorship program in Ottawa in 1995.
Cibart’s experience in educating others soon broadened. In 1996, she went to Harare, Zimbabwe, to visit friends. On the second day of what was supposed to be a holiday, she went downtown to check in with the local HIV group. “HIV in Africa was starting to get into the media,” she says. She soon found herself accepting an invitation to attend a local conference on creating HIV programs — and then staying on to help develop and deliver those programs.
For the next several months, Cibart travelled to remote rural communities in Zimbabwe with a women’s HIV/AIDS support group called Batanai (a Shona word that means “coming together”). She felt humbled by the faith the women in the villages placed in her as a westerner and a nurse. “There was little I could do to help them, but they so appreciated that I was there.”
What still amazes Cibart was the openness of the group and how it reached out to others. “The Batanai women would throw a blanket down on the ground and begin role playing about living with HIV or AIDS. Or they would spontaneously sing a song about the importance of wearing a condom.” Even 15 years later, Cibart feels that the West does not communicate openly enough about HIV/AIDS.
The group’s driving force was Auxillia Chimsoro, a Zimbabwean activist who was herself HIV-positive. “Auxillia’s goal was to get the message out to women that they have a voice and can — and should — take control of their own sexuality,” says Cibart.
Chimsoro, who died in 1998, made a huge impact on her country and on Cibart. “Before leaving Zimbabwe, I promised her I would continue to do the work she did,” she says. “As long as people needed to hear the message about HIV/AIDS, I would continue to get it out.”
Back home, Cibart began speaking about HIV/AIDS in schools, churches and community organizations. She joined several regional and provincial advocacy groups and organized AIDS rallies. And in her new role as a home care nurse with the First Nations and Métis community in Regina, she found that her focus was increasingly on addiction issues that inevitably lead to the risk of hepatitis C and HIV/AIDS.
Cibart’s international and local community work garnered her a Saskatchewan Healthcare Excellence Award in 2005. Further recognition came in 2009, when she was appointed Canada’s worker representative on the United Nations ILO committee on HIV/AIDS and the world of work.
The tripartite committee was composed of more than 150 government, employer and worker representatives from 50 UN member countries, who were tasked with coming up with an International Labour Standard to help inform responses — at the global, regional, national and enterprise levels — to the workplace challenges posed by HIV/AIDS. “I felt privileged that the Canadian government and Canadian Labour Congress took a chance on someone as little known as I am. I didn’t have the strong trade union skills of some of my committee colleagues, but I had knowledge about the front lines, which they didn’t have, so it balanced out.”
The committee work was carried out in two sessions, each lasting several weeks in Geneva, in June 2009 and June 2010. “It was a daunting challenge, getting so many different cultures to agree on the language to be included,” says Cibart. “Some countries refused to acknowledge that they had gay men; others didn’t want women’s issues mentioned separately. But in the end, we came out with a very strong document.”
An overwhelming majority of the representatives adopted this historic recommendation, which is the first international instrument designed to guide workers, employers and governments in taking actions to prevent HIV transmission, lessen the impact of the disease and protect human rights at work. “The focus of this document is on the treatment of everyone affected by the disease — not just those who are infected,” Cibart explains. “I’m hopeful that it’s going to increase collaboration in the global response to HIV/AIDS and help provide equal access to treatment, care and support.”
Now that the instrument has been adopted, Cibart is speaking to Canadian labour organizations and businesses about the impact it will have on the working population and the world.
Cibart never thought HIV/AIDS would affect her personally. But in 2004, her brother was diagnosed with AIDS. “It was a huge shock to me. I couldn’t believe it was becoming part of my own family. Everyone thought I would be able to draw on my experience to provide extra help, but I found it very surreal,” she candidly admits. “I had always been able to come back from my travels and share my stories openly with my family. Now, I wanted to protect them from being affected by them. But over time, you just go on with it — it becomes part of your life.”
Another part of Cibart’s life now is helping to care for her partner’s eldest son, who has quadriplegia as the result of a spinal cord injury. In this instance, Cibart was definitely able to draw on her previous experience: in the 1980s, she had been a rehab nurse at Wascana Rehabilitation Centre and a live-in caregiver for a man with quadriplegia.
Cibart is currently a palliative home care nurse, and she stays involved with Regina’s First Nations and Métis people as a volunteer on a steering committee for aboriginal health. “I learned so much from a group that had a silent voice for so long,” she says. “They showed me first-hand how discrimination and poverty have affected an entire community of people in Canada. The social determinants of health need to be addressed. That action is what’s going to make a difference in their lives.”
Music is a big part of Cibart’s life. She plays French horn and trumpet — the latter in the Brass Bandits, a quintet that performs in and around Regina. Cibart is also learning the fiddle, with help from some of her family members, who are “much more proficient.”
Cibart’s personal heroes are her parents. They have supported her in everything she has ever chosen to do. “My parents came with me to rallies for HIV/AIDS, and they still do — only now it’s for my brother as well. They’ve always been strong believers in social justice.”
That kind of dedication is clearly a family trait.