living and breathing
so i said i was going to use this forum for, among other things, my journalistic work and i haven't really been doing that... i haven't really been posting much at all lately so in order to make up for it, here's a lengthy piece
this was a magazine feature i wrote for one of my journalism classes a year and a half ago now
i never really shared it with many people and as much as i wanted to try and actually get it published, i got a tad lazy
i feel this is an important story to tell so i thought i would post it here... i've changed the name of the main 'character' due to the personal nature of the article
read it, love it, hate it - it's up to you... hopefully, if anything, you can gain a bit of perspective on life
this was a magazine feature i wrote for one of my journalism classes a year and a half ago now
i never really shared it with many people and as much as i wanted to try and actually get it published, i got a tad lazy
i feel this is an important story to tell so i thought i would post it here... i've changed the name of the main 'character' due to the personal nature of the article
read it, love it, hate it - it's up to you... hopefully, if anything, you can gain a bit of perspective on life
The clock on the wall read 10:12 a.m. It was May 14, 1991, two days before her 39th birthday and Alice Smith* had just been told she was going to die. “I guess sub-consciously I felt the need to know what time it was when I was told I was going to die. It was really weird. The doctor said I had tested positive for HIV anti-bodies. We used to call it the AIDS test. And I reacted like, ‘What does that mean?’ I was in shock. He said, you have HIV and that’s how you get AIDS and I should go take care of my affairs,” Smith recalls.
Smith was sitting in a sterile room of an STD clinic in Rochester, New York, that day. The doctor sat across the room at an oversized wooden desk and told her the results in a matter-of-fact tone as a nurse handed her a stack of material on HIV and AIDS. The startling news came eight months after she had been raped by two strangers just blocks from her apartment in Ottawa, in her own car. The thought of AIDS never entered her mind after her terrifying experience but after the nurse examined her, she was told she should be tested. After testing negative twice, she moved to New York to get support from friends after the rape. She tested one more time with her friend Lisa who needed support herself. Ironically, her friend’s test came back negative and it was Smith who now sat across the room from the doctor, with shock and awe written across her face.
Smith went home, unplugged her phone, locked her door and closed her drapes. “I was getting ready to die. I didn’t talk to anybody and I didn’t go outside.” She cut herself off from the world for six weeks and even considered suicide. Finally, Lisa showed up at her door and wouldn’t leave until she answered. After a long drive, Smith confided in her friend. She told Smith she would be with her every step of the way. In disbelief, Smith was tested seven more times, each one saying the same thing. At a point when Smith could only recall a few gay men she knew having AIDS, she looked for someone she could relate to. She found one other positive woman through her AIDS counsellor in Rochester and the two met on a regular basis. The number of women meeting multiplied and eventually the group got so big the meetings ran twice a week instead of once so each woman had a chance to speak. Smith, who grew up in Toronto, moved back to be close to her children, then 20 and 21, and her grandchildren, newborns.
Fast forward almost 15 years and Smith, 52, is still looking for support geared towards women and is trying to help other positive women in return. Casey House, a hospice in Toronto providing supportive care for people with HIV/AIDS, is where Smith found her support system. Small organizations like this are what help people, including women, deal with HIV/AIDS. Fife House, another organization in Toronto, helps HIV and AIDS patients find affordable housing. Although the office space might be cramped, it’s a cozy environment, says Andrea Donovan, a case coordinator for the Gladstone Women's Program, the only housing development at Fife House specifically for women. It is one of the few services in the city offering female-focused help. “There’s still a stigma attached to HIV and AIDS,” she says. “Gladstone is the only program of its kind in North America, and it’s sad that there aren’t more organizations supporting women’s services.”
Although there may be great work being done by organizations across Canada, the number of women with HIV and AIDS is still increasing. “We have one of the worst situations imaginable right now - soaring infection rates in a new generation of women in Canada,” says Louise Binder, chair of the Canadian Treatment Action Council and vice-chair of Voices of Positive Women. “HIV is a disease of those on the margins of society. It’s a disease for those that society stigmatizes and discriminates against women, gay men, aboriginal people, sex trade workers, illicit drug users, black people, poor people.” Binder, 56, a petite woman who talks with conviction, was diagnosed with HIV in 1993. She knows firsthand the stigma attached to the disease and the backseat it takes to other medical issues and to HIV positive men.
The common link made between HIV and men is part of the reason Smith was so shocked when diagnosed. Others feel it is something that happens just in Africa or the Caribbean, but it is happening right here. With both HIV and AIDS, women deal with situations unique to their gender. They often have to think about children and pregnancy as well as what men have to deal with in terms of job security, insurance and housing. With the number of positive women increasing, the need to improve services is becoming more important. According to the most recent statistics, as of 2002, 7,700 women in Canada tested positive. This accounts for 27.8 per cent of all positive HIV test reports in 2002, up from 12.3 per cent of cases reported between 1985 and 2002. Even with the increase in numbers, though, more women are living with AIDS than dying from it. To ensure more women survive, there is a need for more women-focused programming both in Toronto and Canada. Even if Toronto is one of the most resource-rich communities for positive people with services such as the AIDS Committee of Toronto and the Toronto People with AIDS Foundation, there is a need for more programming, government funding and education focused on women, the leading growing demographic of new HIV/AIDS cases in Canada, before it’s too late.
First we must understand what HIV is. The Human Immunodeficiency Virus attacks the immune system, making someone who is HIV positive more susceptible to infections, viruses and bacteria that most people aren’t vulnerable to. This is where the risk comes in. Once you have contracted a certain sickness considered to be an AIDS-defining illness, such as Kaposi's sarcoma, a type of cancer, you are said to have full blown Acquired Immunodeficiency Syndrome. Someone who is HIV positive may never develop AIDS, though, if the strain or strains of HIV are kept under control. Transmission of the virus occurs through the exchange of bodily fluids including semen, pre-cum, vaginal fluids, blood and breast milk. Once HIV has been contracted, you may become re-infected with other strains. This means even if you and your partner are HIV positive, it is still important to practise safe sex otherwise you could become even more sick.
Women are more susceptible to the virus than men for biological and social reasons. Biologically, the vagina has a larger area than the penis for the virus to infect. Socially, it is harder for women to negotiate safer sex with their partners. This is where the need for more education in HIV/AIDS awareness is needed and, in turn, more funding for women’s programming.
According to Statistics Canada, women accounted for 25 per cent of positive HIV tests in Toronto in 2002. There’s no one reason why more women are testing positive. It could simply be that more women are getting tested than in years past, especially with the opening of hassle free clinics. Women could have had the disease for a log period of time and not have known since they hadn’t been tested. Nevertheless, the numbers are on the rise and more focus needs to be put on prevention so that women never have to face the disease in the first place. If they do test positive, more programming needs to be made available to help women deal with issues unique to them. This is the sentiment heard from Smith as well as AIDS and HIV organizations around Toronto.
“Women’s health has always been a second-class citizen at the best of times,” stressed Binder in a speech she made on women and AIDS at the 10th Women’s Health Matters Forum and Expo held in Toronto this past January. “If we don’t all stick together and employ some very aggressive tactics, we will be left moving deck chairs around on the Titanic.” Sunken ship metaphors aside, women are usually the primary caregivers in a household and often forget their health matters, a point Donna Braybrook and Kristy Buck, from the AIDS Committee of Toronto, also make.
Braybrook, director of support services for ACT, says although their organization’s mandate is to help all people with AIDS and HIV, they do have women-specific programming such as employment help and socials. They realize women living with HIV are often caregivers so they make childcare a priority during these times. “There are all kinds of possible scenarios for women living with HIV that makes her needs somewhat more complicated,” says Braybrook. “And you can’t minimize the value and the benefit from peer support, from other people connecting to other people and building support networks amongst themselves.” Smith is thankful her children were grown when she tested positive. It means one less worry for her.
On top of mother-friendly support programs, it is hard for positive women to find housing, which is why Fife House exists. “When a woman moves into their own place you can see them getting healthier right away,” says Donovan. One organization can only do so much, though, and there is always a waiting list, varying in length, for the rent-geared-to-income housing the agency provides.
Insurance may also be hard to come by for both men and women when the company asks about their medical backgrounds. Job searching can be difficult too, especially for women who have to take care of their children on top of working out their medication regimes and making sure they’re healthy enough to work in the first place.
Programming also needs to be specifically geared towards pregnant women. Education for positive, pregnant women is the number one way of keeping numbers down. Although the chances of mother-to-baby transmission in Canada are less than two per cent, down from 25 per cent a few years ago, this is a result of education and the use of HIV therapy drugs during pregnancy. Almost all AIDS and HIV patients are on a cocktail of pills. At one time, Smith was taking 89 pills a day. She’s down to 20. Medication costs can be more than $1,000 a month, so it helps that there are programs in Ontario such as the Trillium Foundation, which help subsidize drug plans for a premium. Positive women can also get free formula in Toronto through Teresa Group, so there is no risk of transmitting the virus through breast feeding.
Programs that educate women on prevention not only of transmitting HIV from mother to child but of ever contracting the virus, are what young women need. “Education is the key to preventing AIDS,” says Smith. The increase in positive women in Canada is currently highest among 15 to 29 year olds. Prevention programs in schools educate women on how to negotiate safer sex with their partners, one of the reasons why women may be contracting HIV more, according to Buck, a case manager for ACT. “It’s not always as simple as using a condom or not using a condom but talking about the dynamics within the relationship.” Women who are in abusive relationships find it hard to negotiate anything, never mind safer sex, she points out. Having targeted education programs where women are with other women to talk about negotiating with their partner is one of the only ways girls and women will feel comfortable talking about the subject.
According to the Toronto District School Board, it is doing all it can to ensure there is programming in public schools. Health education for HIV and AIDS starts in grade 7 and continues through high school. It is up to principals to make sure health teachers are covering the material the school board has mandated for them, says Elefteria Velentzas of the TDSB. However, some people are skeptical about what young people are being taught. “There is a concern that there is a relaxed attitude towards HIV,” says Braybrook. “I think because it’s been around for a while now, people are feeling like it has become a manageable disease and that you’re not going to die from it the way you did 15 or 10 years ago.” This is obviously not the case. Although people are living longer, people are still dying from the viruses that occur because of HIV and AIDS. These facts are particularly alarming when you consider that AIDS and HIV are preventable diseases. Education is one way to help lower the number of casualties.
Agencies need a way to target education, though, and a place to do it in. The small space Fife House occupies is not uncommon for AIDS and HIV organizations. Voices of Positive Women, the only provincial organization focused solely on women, is also just a small room located off the side of an apartment building. These organizations are small for a reason - most of their funding goes into the programs they offer, not their facilities. Size doesn’t matter to these organizations that rely on volunteers. As long as the space is welcoming, that’s what’s important. All of these organizations run through a combination of private donors, fundraising and government funding.
At ACT, they don’t currently have the funding for the women and HIV prevention position.
“We would absolutely be able to do more with more funding. I think we’re really good with operating and delivering programs on a shoestring but we would be able to provide more meaningful services that are more integrated with the healthcare system,” says Braybrook. They receive funding from all three levels of government but 60 per cent of it comes from private corporate sponsors, donations and fundraising. Voices, Fife House and Casey House also receive government funding but it’s not enough to survive. Without funding from private donors and fundraising events, these organizations would not have their existing programs.
It’s easy to say here’s the solution to decrease women’s HIV infection rates – more prevention programming. And it’s easy to say there needs to be more women-focused organizations to help positive women. It’s another thing to actually do something about it. “If one group of women is not safe, then none of us is safe. It’s not one disease versus another but rather women’s health that we have to protect and enhance together,” says Binder. No one person can do this alone, women need to come together to find a solution and support each other.
Just like Smith was trying to find support back in 1991, she lends support to other women now, specifically those in her native community. “I see my survival as a gift from Creator, which is why I do the work I do now,” says Smith. Her friend, who she began her small support group with in New York, has since passed away. Smith will forever remember her friend and others she has lost, and in doing so, will do her best to mentor those who need it. “No one asks for this disease,” she says. “So no one should have to go through it alone.”
*name changed
Smith was sitting in a sterile room of an STD clinic in Rochester, New York, that day. The doctor sat across the room at an oversized wooden desk and told her the results in a matter-of-fact tone as a nurse handed her a stack of material on HIV and AIDS. The startling news came eight months after she had been raped by two strangers just blocks from her apartment in Ottawa, in her own car. The thought of AIDS never entered her mind after her terrifying experience but after the nurse examined her, she was told she should be tested. After testing negative twice, she moved to New York to get support from friends after the rape. She tested one more time with her friend Lisa who needed support herself. Ironically, her friend’s test came back negative and it was Smith who now sat across the room from the doctor, with shock and awe written across her face.
Smith went home, unplugged her phone, locked her door and closed her drapes. “I was getting ready to die. I didn’t talk to anybody and I didn’t go outside.” She cut herself off from the world for six weeks and even considered suicide. Finally, Lisa showed up at her door and wouldn’t leave until she answered. After a long drive, Smith confided in her friend. She told Smith she would be with her every step of the way. In disbelief, Smith was tested seven more times, each one saying the same thing. At a point when Smith could only recall a few gay men she knew having AIDS, she looked for someone she could relate to. She found one other positive woman through her AIDS counsellor in Rochester and the two met on a regular basis. The number of women meeting multiplied and eventually the group got so big the meetings ran twice a week instead of once so each woman had a chance to speak. Smith, who grew up in Toronto, moved back to be close to her children, then 20 and 21, and her grandchildren, newborns.
Fast forward almost 15 years and Smith, 52, is still looking for support geared towards women and is trying to help other positive women in return. Casey House, a hospice in Toronto providing supportive care for people with HIV/AIDS, is where Smith found her support system. Small organizations like this are what help people, including women, deal with HIV/AIDS. Fife House, another organization in Toronto, helps HIV and AIDS patients find affordable housing. Although the office space might be cramped, it’s a cozy environment, says Andrea Donovan, a case coordinator for the Gladstone Women's Program, the only housing development at Fife House specifically for women. It is one of the few services in the city offering female-focused help. “There’s still a stigma attached to HIV and AIDS,” she says. “Gladstone is the only program of its kind in North America, and it’s sad that there aren’t more organizations supporting women’s services.”
Although there may be great work being done by organizations across Canada, the number of women with HIV and AIDS is still increasing. “We have one of the worst situations imaginable right now - soaring infection rates in a new generation of women in Canada,” says Louise Binder, chair of the Canadian Treatment Action Council and vice-chair of Voices of Positive Women. “HIV is a disease of those on the margins of society. It’s a disease for those that society stigmatizes and discriminates against women, gay men, aboriginal people, sex trade workers, illicit drug users, black people, poor people.” Binder, 56, a petite woman who talks with conviction, was diagnosed with HIV in 1993. She knows firsthand the stigma attached to the disease and the backseat it takes to other medical issues and to HIV positive men.
The common link made between HIV and men is part of the reason Smith was so shocked when diagnosed. Others feel it is something that happens just in Africa or the Caribbean, but it is happening right here. With both HIV and AIDS, women deal with situations unique to their gender. They often have to think about children and pregnancy as well as what men have to deal with in terms of job security, insurance and housing. With the number of positive women increasing, the need to improve services is becoming more important. According to the most recent statistics, as of 2002, 7,700 women in Canada tested positive. This accounts for 27.8 per cent of all positive HIV test reports in 2002, up from 12.3 per cent of cases reported between 1985 and 2002. Even with the increase in numbers, though, more women are living with AIDS than dying from it. To ensure more women survive, there is a need for more women-focused programming both in Toronto and Canada. Even if Toronto is one of the most resource-rich communities for positive people with services such as the AIDS Committee of Toronto and the Toronto People with AIDS Foundation, there is a need for more programming, government funding and education focused on women, the leading growing demographic of new HIV/AIDS cases in Canada, before it’s too late.
First we must understand what HIV is. The Human Immunodeficiency Virus attacks the immune system, making someone who is HIV positive more susceptible to infections, viruses and bacteria that most people aren’t vulnerable to. This is where the risk comes in. Once you have contracted a certain sickness considered to be an AIDS-defining illness, such as Kaposi's sarcoma, a type of cancer, you are said to have full blown Acquired Immunodeficiency Syndrome. Someone who is HIV positive may never develop AIDS, though, if the strain or strains of HIV are kept under control. Transmission of the virus occurs through the exchange of bodily fluids including semen, pre-cum, vaginal fluids, blood and breast milk. Once HIV has been contracted, you may become re-infected with other strains. This means even if you and your partner are HIV positive, it is still important to practise safe sex otherwise you could become even more sick.
Women are more susceptible to the virus than men for biological and social reasons. Biologically, the vagina has a larger area than the penis for the virus to infect. Socially, it is harder for women to negotiate safer sex with their partners. This is where the need for more education in HIV/AIDS awareness is needed and, in turn, more funding for women’s programming.
According to Statistics Canada, women accounted for 25 per cent of positive HIV tests in Toronto in 2002. There’s no one reason why more women are testing positive. It could simply be that more women are getting tested than in years past, especially with the opening of hassle free clinics. Women could have had the disease for a log period of time and not have known since they hadn’t been tested. Nevertheless, the numbers are on the rise and more focus needs to be put on prevention so that women never have to face the disease in the first place. If they do test positive, more programming needs to be made available to help women deal with issues unique to them. This is the sentiment heard from Smith as well as AIDS and HIV organizations around Toronto.
“Women’s health has always been a second-class citizen at the best of times,” stressed Binder in a speech she made on women and AIDS at the 10th Women’s Health Matters Forum and Expo held in Toronto this past January. “If we don’t all stick together and employ some very aggressive tactics, we will be left moving deck chairs around on the Titanic.” Sunken ship metaphors aside, women are usually the primary caregivers in a household and often forget their health matters, a point Donna Braybrook and Kristy Buck, from the AIDS Committee of Toronto, also make.
Braybrook, director of support services for ACT, says although their organization’s mandate is to help all people with AIDS and HIV, they do have women-specific programming such as employment help and socials. They realize women living with HIV are often caregivers so they make childcare a priority during these times. “There are all kinds of possible scenarios for women living with HIV that makes her needs somewhat more complicated,” says Braybrook. “And you can’t minimize the value and the benefit from peer support, from other people connecting to other people and building support networks amongst themselves.” Smith is thankful her children were grown when she tested positive. It means one less worry for her.
On top of mother-friendly support programs, it is hard for positive women to find housing, which is why Fife House exists. “When a woman moves into their own place you can see them getting healthier right away,” says Donovan. One organization can only do so much, though, and there is always a waiting list, varying in length, for the rent-geared-to-income housing the agency provides.
Insurance may also be hard to come by for both men and women when the company asks about their medical backgrounds. Job searching can be difficult too, especially for women who have to take care of their children on top of working out their medication regimes and making sure they’re healthy enough to work in the first place.
Programming also needs to be specifically geared towards pregnant women. Education for positive, pregnant women is the number one way of keeping numbers down. Although the chances of mother-to-baby transmission in Canada are less than two per cent, down from 25 per cent a few years ago, this is a result of education and the use of HIV therapy drugs during pregnancy. Almost all AIDS and HIV patients are on a cocktail of pills. At one time, Smith was taking 89 pills a day. She’s down to 20. Medication costs can be more than $1,000 a month, so it helps that there are programs in Ontario such as the Trillium Foundation, which help subsidize drug plans for a premium. Positive women can also get free formula in Toronto through Teresa Group, so there is no risk of transmitting the virus through breast feeding.
Programs that educate women on prevention not only of transmitting HIV from mother to child but of ever contracting the virus, are what young women need. “Education is the key to preventing AIDS,” says Smith. The increase in positive women in Canada is currently highest among 15 to 29 year olds. Prevention programs in schools educate women on how to negotiate safer sex with their partners, one of the reasons why women may be contracting HIV more, according to Buck, a case manager for ACT. “It’s not always as simple as using a condom or not using a condom but talking about the dynamics within the relationship.” Women who are in abusive relationships find it hard to negotiate anything, never mind safer sex, she points out. Having targeted education programs where women are with other women to talk about negotiating with their partner is one of the only ways girls and women will feel comfortable talking about the subject.
According to the Toronto District School Board, it is doing all it can to ensure there is programming in public schools. Health education for HIV and AIDS starts in grade 7 and continues through high school. It is up to principals to make sure health teachers are covering the material the school board has mandated for them, says Elefteria Velentzas of the TDSB. However, some people are skeptical about what young people are being taught. “There is a concern that there is a relaxed attitude towards HIV,” says Braybrook. “I think because it’s been around for a while now, people are feeling like it has become a manageable disease and that you’re not going to die from it the way you did 15 or 10 years ago.” This is obviously not the case. Although people are living longer, people are still dying from the viruses that occur because of HIV and AIDS. These facts are particularly alarming when you consider that AIDS and HIV are preventable diseases. Education is one way to help lower the number of casualties.
Agencies need a way to target education, though, and a place to do it in. The small space Fife House occupies is not uncommon for AIDS and HIV organizations. Voices of Positive Women, the only provincial organization focused solely on women, is also just a small room located off the side of an apartment building. These organizations are small for a reason - most of their funding goes into the programs they offer, not their facilities. Size doesn’t matter to these organizations that rely on volunteers. As long as the space is welcoming, that’s what’s important. All of these organizations run through a combination of private donors, fundraising and government funding.
At ACT, they don’t currently have the funding for the women and HIV prevention position.
“We would absolutely be able to do more with more funding. I think we’re really good with operating and delivering programs on a shoestring but we would be able to provide more meaningful services that are more integrated with the healthcare system,” says Braybrook. They receive funding from all three levels of government but 60 per cent of it comes from private corporate sponsors, donations and fundraising. Voices, Fife House and Casey House also receive government funding but it’s not enough to survive. Without funding from private donors and fundraising events, these organizations would not have their existing programs.
It’s easy to say here’s the solution to decrease women’s HIV infection rates – more prevention programming. And it’s easy to say there needs to be more women-focused organizations to help positive women. It’s another thing to actually do something about it. “If one group of women is not safe, then none of us is safe. It’s not one disease versus another but rather women’s health that we have to protect and enhance together,” says Binder. No one person can do this alone, women need to come together to find a solution and support each other.
Just like Smith was trying to find support back in 1991, she lends support to other women now, specifically those in her native community. “I see my survival as a gift from Creator, which is why I do the work I do now,” says Smith. Her friend, who she began her small support group with in New York, has since passed away. Smith will forever remember her friend and others she has lost, and in doing so, will do her best to mentor those who need it. “No one asks for this disease,” she says. “So no one should have to go through it alone.”
*name changed
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