The Positive Side. Editor's Letter

Editor’s Letter

by RonniLyn Pustil

“The thing that women have got to learn is that nobody gives you power. You just take it.” — Roseanne Barr

These words, from the loudmouthed matriarch of TV’s premier dysfunctional sitcom family, struck a chord with me when I first read them years ago and were a refrain in my mind during the production of this special women’s issue of The Positive Side. “Taking power” is easier said than done, as we all know. How to do this when the odds are stacked against you — as a woman, person living with HIV/AIDS, drug user, single mother, gay man or lesbian?

One of the oldest slogans of AIDS activism is “knowledge = power.” That conviction is the driving force of the work we do here at CATIE: disseminating cutting-edge treatment information so people with HIV/AIDS (PHAs) have the knowledge they need to make informed decisions about their health care and quality of life. Along with that knowledge often comes a sense of empowerment. As Jane Strickland, who’s been living with HIV for 13 years, says in these pages, “The more you know, the more empowered you can become.”

Knowledge comes in many shapes and sizes. There’s treatment knowledge — knowing the facts and keeping up to date on the latest research. And then there’s the deeper knowledge about living with HIV — the emotional, sharing, communal and inspirational stuff that lets you know you’re not alone as you face the challenges of life with HIV. This double issue is jam-packed with both kinds of knowledge — all the info a woman needs to reach her potential in the health and happiness department — to help make it the useful reference guide we wanted to create for women, with women.

HIV infection rates are on the rise in women. Before 1995, women represented 8% of new HIV infections in Canada. In 2001, the number rose to 25%. Globally, 50% of adult PHAs are now women. AIDS disproportionately affects women and girls who are vulnerable and who shoulder the burden of caring for others. The executive director of the United Nations Development Fund for Women (UNIFEM), Noeleen Heyzer, recently said: “We must do all we can to loosen and remove the grip of this terrible disease. I believe that one of the most powerful HIV vaccines available today is women’s empowerment… Women’s empowerment is the key to reversing the epidemic.” As you’ll see from reading this Positive Side, it doesn’t take the head of UNIFEM to know this.

Gracing the cover are women who live with HIV/AIDS and those who work with HIV+ women (including Shamim ShambeMiradam, a CATIE staff member who’s been working with HIV+ women for the past decade). I want to thank them all for taking time out from their busy lives to make this Positive Side so vivacious. Their stories, experiences and feelings — and those of many more HIV+ women (most of whom live too far to have made it to the photo shoot) — infuse this issue. We posed the following question to each woman we interviewed: “What subject is nearest and dearest to your heart as a woman living with HIV?”

Their responses are a revelation. Revel in them! They are sure to inspire. Share the magazine with your HIV+ sisters… and brothers (there’s stuff for you too!). Take it to your doctor, nurse or other health care provider, because they learn from you as well. Read it on the bus and let people glance over your shoulder and learn a thing or two about the fabulous, gutsy women who live with HIV.

ROAR.

Jocelyn Paul, 49

Diagnosed with full-blown AIDS: 2000 (with 3 CD4 cells); CD4 count: 117; Viral load: undetectable. Volunteer at AIDS New Brunswick and Healing Our Nation. St. Mary’s First Nation, New Brunswick

I try to learn a lot about HIV and bring it back to my community. I recently spoke to some Aboriginal high school students about HIV. Our community is not in the woods somewhere, it’s right in the middle of the city, so youth can get a hold of drugs and alcohol quite easily. They should know that HIV can happen to anyone. I never thought it would happen to me and I’m having a really hard time with it now.

Family and community support is very important. I get a lot of support from my kids, grandchildren and community. I’m open about my status and haven’t faced any problems in my community yet, even though I know there are a lot of problems out there. If my community hadn’t accepted me, I’d be dead by now. But they care; they ask me about the medications and whether they’re working for me. Community acceptance makes such a big difference.

When I was diagnosed, I couldn’t talk to anyone else, I had nobody to call. I could feel my spirit dying. Then I went on a women’s retreat, where I met other HIV+ women. I got a lot of support from other PHAs. They became my family. Now everybody knows I have HIV. I’ve even asked AIDS New Brunswick to keep my name and number open to anyone who’d like to talk about HIV. I’d like to reach the women who have HIV and no one to talk to, who want to learn more. It’s true, there are a lot of differences between Aboriginal PHAs and other PHAs, but we all have one disease.

Jane Strickland, 40+

Diagnosed with HIV: 1990; CD4 count: above 300; Viral load: undetectable. Professional PHA (board member, committee member and advocate at Voices of Positive Women, HIV/AIDS Regional Services, Ontario AIDS Network, Canadian Treatment Action Council). Gananouque, Ontario

You don’t have to do this alone. Having a strong support network helps you to live with the virus and break down the isolation. Women tend to feel isolated for many reasons. Women also have to look after everybody else. A lot of women don’t have the resources that men do. With so many burdens and obligations, it’s harder for us to ask for help.

Support is very important for me and over the years I’ve developed a strong support network. I have to express my high regard for the gay community, as they had to fight the hardest, and this is where 90% of my support comes from. Every time I find out that someone is newly diagnosed, I get them connected. It’s vital to know that you don’t have to do it alone; there is support out there. There is somebody out there who knows what you’re talking about.

Decisions about particular medical treatments should always be made in consultation with a qualified medical practitioner who is knowledgeable about HIV-related illness and the treatments in question. MORE

Production of this Web site has been made possible through a financial contribution from the Public Health Agency of Canada.