Mike Barrett
Prasad and Sangitha, a married couple who live in Vaughan, are both HIV positive. They have been given pseudonyms to protect their identity due to the stigma of the disease in the community.
Vaughan
November 27, 2008 11:52 PM
Stefania Lamacchia
Prasad and Sangitha live in Vaughan, they’re from South East Asia, they’re happily married with two children and they’re HIV positive.
The couple — who were given pseudonyms to protect their identity — was diagnosed with HIV in 2003.
In the days approaching World AIDS Day held Dec. 1, their story and personal experience redefines the face of HIV/AIDS and the stigma that has plagued this issue.
“I never thought we could be infected with HIV,” Prasad said. “It was such a shock that it took time to realize it because I didn’t know what was going to happen to me.”
Their story begins back in 1995 in their home country, where Sangitha received a blood transfusion during a medical procedure.
A year after the couple emmigrated to Canada in 2002, Prasad began losing weight and noticed several blisters on his body.
Prasad was referred to a specialist who later confirmed his positive status. Sangitha was also tested. Although a first reading showed negative signs, the tests were conducted for a second time several weeks later.
Sangitha, too, was HIV positive. Both their children remain in good health.
“At the time before I found out I was positive, I was scared for my husband,” Sangitha said. “When I found out about my status, I was OK because if anything happens, we’re together now.”
The couple stood at one end of the table, speaking almost at a whisper, about the stigma they endure everyday for acquiring this virus through no fault of their own.
“The basic understanding with people is this is a product of doing something wrong or if you’re gay you will get HIV, and that’s not the case,” Prasad said. “They’re ignorant and it’s going to take time to come out of that.”
After they were diagnosed, Prasad and Sangitha were given a list of organizations that could help them cope with the news. It was then that the couple came across the AIDS Committee of York Region.
The committee opened its doors in 1993. Its small staff of four employees and several volunteers provides dignified care to 100 families in York Region living with HIV and those impacted by the virus, including family members, partners and children. As part of their participation in World AIDS Day, Rogers Television will broadcast one of the committee’s latest youth education initiatives on Dec. 1.
Radha Bhardwaj, executive director of the AIDS Committee of York Region, said HIV is never solely the issue.
“Fear of disclosure and the burden of hiding one’s status from family members, colleagues and peers has a huge sort of psycho-social impact on them directly,” Ms Bhardwaj said.
She explained most clients end up living with depression and fear of losing what’s most important, such as family, friends and even their jobs. That’s where the committee works to ease the social stigma.
“Having support group meetings allows clients to form a community with people who are living with the same issues,” she said.
Prasad and Sangitha are two of those clients who endure a host of issues other than the virus itself.
As a result of taking antiretroviral drugs — the near toxic HIV medication — Prasad says he experiences bouts of depression, memory loss, short-term stuttering and physical disfigurement.
Sangitha’s condition doesn’t require her to take HIV medication, yet. With advice from her doctors, she will postpone the drugs for as long as her body can handle.
Prasad and Sangitha have found comfort in the committee’s programs, which range from rides to doctor appointments, consultations and providing food and clothes.
“These groups can help because you can hear what’s going on with other people and although it may not happen to me, at least I know,” Prasad said. “Smaller organizations are more effective, but it all depends on the funds sometimes.”
Despite being granted core funding from the Ministry of Health in 2005, money for the committee’s many programs continues to remain an obstacle for this tiny group.
“HIV/AIDS isn’t a very sexy project to support and by its very nature this sector is underfunded,” said committee director Ms Bhardwaj.
“People are more willing to give to cancer, children, or senior’s causes before they open their purses to HIV/AIDS.”
On top of the countless daily services the committee provides its members with, they run a number of projects, including youth education programs in schools across the region and the Adopt-A-Family campaign that kicks off this winter season.
“I think the community’s response in the last three years has been incredible. We have built partnerships with churches, schools, and we’ve enhanced our profile and visibility in the community just through our active involvement,” Ms Bhardwaj said.
In fact, the committee recently received funding from the United Way of York Region to help organize their youth program.
“The United Way saw that this was a real issue for the region and the opportunity to support a really marginalized group. Most of all, they were brave enough to do it,” she said.
But despite its successes region wide, the organization finds Vaughan’s response to be minimal and an increasingly difficult area to penetrate.
But Daniele Zanotti, CEO of United Way of York Region, has an answer.
Mr. Zanotti stresses the rapid evolution of Vaughan — from its predominately rural beginnings to now urban communities — has a lot to do with the city’s response to these urban issues.
“What we’re starting to see in York Region, more so than in the past, are the visible faces of poverty and homelessness. Like people at the intersection of Hwys. 400 and 7 asking for change, these are the things we would have never seen before,” Mr. Zanotti said.
The same goes for HIV/AIDS.
“When we were growing up we saw AIDS as this global issue, but now with growth and change we’re beginning to see this north of Steeles,” he said. “Be it Vaughan, Markham or Newmarket, that’s just how small our global world is becoming.”
And this global view of HIV being an international issue that doesn’t affect Canada is hindering our perception of the issues we have at home.
“In York Region, there is more focus on HIV in Africa than there is locally. They think it doesn’t exist, that clients can afford to pay for their medication or the medication is covered,” said Haran Vijayanathan, the committee’s program manager of support services.
Ms Bhardwaj agrees that the community needs to focus on what is happening right outside.
“We don’t, by the grace of God, have the numbers to match the devastation the pandemic has caused in Africa, but we must remember as we support causes there, we should also support causes here,” she said.
Ms Bhardwaj gently reminds the community that although York Region is not considered a high prevalence area, we are very close to one — Toronto.
Given the committee’s young age and only being granted anonymous testing this year, York Region’s statistics are skewed when it comes to HIV/AIDS. And Ms Bhardwaj is confident the committee will see a rise in members that will be referred to them by public health.
Proximity to Toronto is why the committee stresses the importance of raising awareness and educating residents about the way HIV spreads.
“It’s the most difficult virus to transmit, but it’s so easily transmitted because people are ignorant and don’t learn the behaviours on how it’s transmitted,” program manager Mr. Vijayanathan said.
He reiterates that even though Canada may have screened their blood for HIV, we cannot say the same for other countries.
This is where Prasad and Sangitha come into play, the cases of HIV patients who received tainted blood.
“There are people living with HIV because of blood transfusions and people fail to see past that. You have to start thinking outside the box and start supporting people,” Mr. Vijayanathan said.
That education and support must start from the ground up. But in order to create a better community, people need the opportunity to ask those questions surrounding HIV.
“I think the burden of understanding HIV and really learning about the issue falls on us as a community,” Ms Bhardwaj said. “We shouldn’t further marginalize people who are living with the issue by saying they are deserving of this because it’s behavioural.”
The committee says the stereotype that AIDS is a product of the gay community is completely false. In fact, most of the clients the committee serves have come to HIV through violence, rape, people who have struggled with mental health problems and homelessness and, in Prasad and Sangitha’s case, blood transfusions.
“HIV does not discriminate. It can impact anyone, regardless of gender, class or race,” Ms Bhardwaj said.
But the stigma remains. Perhaps for the 2008 World AIDS Day, Vaughan can work to change that.
“We really have a lot of work to do on un-training,” Mr. Vijayanathan. “When you come to an area like York Region with conservative values and beliefs, it doesn’t go any further than that because it’s all people know and all they’ve been taught for the last 20 years,” he said.
And Prasad and Sangitha agree.
“From the very beginning, HIV/AIDS has been portrayed in such a manner that it’s only gay people or people having bad habits and now we have to correct that mistake,” Prasad said. “It was difficult to talk about HIV then, and it will be difficult now.”
If there is one thing Vaughan is known for, it’s change. This Dec. 1, residents will have a chance to change their attitudes as well.
The AIDS committee is ready to accept the offer. For more information on the committee’s programs and how you can help, visit their table at the York Central Hospital on Dec. 1, or log onto www.acyr.org.
What you can do
- According to the Ontario Human Rights Commission, 70.8 per cent of all complaints filed in the 2007-08 annual report dealt with employment. Of that total, 1,404 were on the grounds of disability, the section which covers HIV/AIDS. For more information, go to the Human Rights Commission website at www.ohrc.on.ca.
- Visit the AIDS Committee of York Region on World AIDS Day Dec. 1 at York Regional Hospital where they will have a booth. For more information services the agency provides or to volunteer, go to www.acyr.org.