Announcement from the Canadian HIV/AIDS Legal Network 

Women's voices have rarely been heard on this important issue. What happens if a woman does not disclose her HIV-positive status to a sexual partner? How does criminalization impact HIV-positive women in Canada, who are trying to live their lives in the shadow of stigma and fear? Does the law actually protect women's health? How do women feel about their experience with the criminal law with respect to HIV non-disclosure?

Positive Women: Exposing Injustice takes the audience into the hearts and minds of four positive women bravely speaking out on this important issue.

Buy tickets to the world premier in Toronto, Canada here 

June 14 at 6:30 p.m., Royal Ontario Museum/

This article first appeared on the website of Positive Women’s Network (PWN).

Stigma and discrimination are challenges for everyone with HIV, but women in particular can also face these issues:

• Women are more vulnerable to infection during unprotected heterosexual sex
• Women with HIV remain largely invisible
• Women face sexual stigma
• Power imbalances in relationships that usually favour men
• Medical care doesn’t acknowledge women’s risk for HIV
• Women are often caregivers with little resources for themselves
• Disclosure can be dangerous

Biological Vulnerability to Infection

Women are far more likely to be infected with HIV by a man during unprotected intercourse than to infect a man themselves. During unprotected vaginal or anal sex, semen stays in contact with women’s tissues longer than a man is exposed to her secretions, and even microscopic tears in tissue can lead to HIV transmission. Young women and post menopausal women, who have less resilient vaginal tissues, are particularly vulnerable. Undiagnosed and untreated sexually transmitted infections can also increase the risk. 

Women with HIV are Invisible

To the general public, women with HIV are still pretty invisible- it’s still largely seen as a disease of gay men or drug users. Women living with HIV are rarely mentioned, and if they are, it is usually women who live outside North America. As a result, women may not even know the facts about HIV transmission, safer sex, or where to turn if they do test positive. 

Sexual Stigma

Lots of sexual health information doesn’t reflect the variety of possibilities and potential risks for HIV transmission. When women talk frankly about their sex lives, they can be stigmatized as immoral or “deserving” of HIV. We’ve got to change this. Information needs to acknowledge that healthy sex lives can include a number of (male or female) partners in a lifetime and a wide variety of sexual acts. It also needs to acknowledge that women can’t always insist on safer sex and it’s not their fault if this is the case, because power imbalances exist (see below). 

Power Imbalances in relationships

Relationships are complex, and women don’t always have the say they would like. Maybe the partner limits access to friends, or withholds money as ‘a joke.’ It could be more extreme, like regular rounds of humiliation; telling her she’s useless and lucky to have her partner. If she’s positive, forbidding disclosure of HIV status is not unusual. If a woman is in a relationship with a controlling partner, she may not have access to essential medicines, support or information to help her stay healthy. This can also mean she’s not in a position to negotiate safer sex. 

Medical care that doesn’t acknowledge women’s risk for HIV

It can be difficult for women to find the information they need if they do not have support from doctors. One member of PWN said she had to convince a doctor to test her, because she didn’t seem “the type.” Media stereotypes of women who ‘deserve’ HIV don’t reflect the reality that anyone having unprotected sex could get a sexually transmitted infection, including HIV. 

Women of colour, immigrant women, aboriginal women and lesbians may face added discrimination via language barriers, racism, colonialism, and homophobia. This can lead to a misdiagnosis of the illness, and makes it difficult for women to make informed health care decisions. 

Women are caregivers with little time for themselves

Many women are caregivers to partners, children, and parents. Taking care of others means women have little time for their own health care. This makes it tough for women with HIV to access medical appointments, support groups, nutritional supplements, and other tools necessary to manage their HIV. 

Disclosure can be dangerous

For many women living with HIV/AIDS, disclosing their status causes reactions of anger, judgment and hostility. Women fear the loss of their children, jobs and community. Others worry about physical violence from partners. These fears leave women feeling very isolated and alone. Fear can also prevent women from accessing the support and information they may require in order to live with HIV

Editor’s note: This article first appeared on the blog of the Positive Women’s Network here.  We had published the Xtra article referred to below, without comment on our part, here. That's not to say we didn't recognize the controversial nature of some of Salerno's remarks relating to funding of women’s programming. So we welcomed this opportunity for a representative of the HIV women’s community to present her views. (Thank you, Janet.)

*Sigh.*

It was disheartening to read a piece on HIV funding that appeared in Xtra a couple of weeks ago. I could understand author Rob Salerno’s take on the challenging process that many HIV service organizations in Ontario faced recently in applying for funding under a tight deadline. Here in BC we faced it too, and there were supportive phone calls and emails back and forth between groups as we all wrote feverishly to meet said deadline. 

What I found disheartening was Salerno’s comment on one successful funding application. Instead of applauding it, he wrote, “ I’m unconvinced that a province-wide wellness retreat for HIV-positive women …. (is) the best use of limited public funding to fight HIV.”

You know, I’ve heard that before.

Positive Women’s Network has been around for over twenty years, and in that time we’ve had people bluntly ask us why we deserve funding. Why should services for women with HIV get money when so many more men are infected? The answer is this - women get HIV, and are doing so in increasing numbers. Their needs, experiences and lives are different than men’s. A sampling could list gender roles, biological vulnerability, women’s roles in their specific cultures, histories of gender-based violence and sexual assault. Women express the need for women-only services, as we heard over and over when we did a retrospective of our work. One type of organization doesn’t fit all.

We offer a range of services that include weekend retreats for women. These retreats provide health education on HIV, treatments and disease progression; leadership development, and peer support. Women tell us we’ve changed their lives and made a death sentence manageable. Some aren’t sure how they would have gone on if it weren’t for our retreats. If that can be offered to women in other parts of the country, bravo, I say.

Salerno despairs the lack of funding that compromises the work of support organizations, and I get that - there isn’t enough money to go around to everyone. Yet he also recognizes that the organization that successfully received funding has a client base that’s over one third women.

We are fortunate at PWN that many organizations and individuals we’ve worked with over two decades have abandoned their skepticism as they’ve seen the women we work with and the work we do.

HIV funding isn’t endless, as anyone who applies for it knows. But are we in this fight together or what? I’ve believed through the work of many that we are, but obviously there are folks who hold a different opinion.

- Janet

It was June 1994.When I heard the specialist give me my HIV diagnosis and tell me that my baby girl had AIDS, the shock was paralyzing.

I knew I must have gone into shock because my legs were shaking and I felt like someone had come and punched me in the gut.  I had to sit down because I was no longer able to stand.  I had such a sharp intake of breath that I felt winded.  Thoughts raced through my mind so quickly that I couldn’t even keep track of them.  My eyes squinted and a frown settled on my brow.  I started to feel sick, I wanted to throw up.  It was, quite honestly, the worst moment of my life.  Even Katie’s horrible death at nine months (just three months after diagnosis), was not as big as hearing the news that we were both infected with HIV.

Appointments were set and I had my first meeting with a women’s HIV specialist, Dr. Burdge.  I don’t have to tell anyone who knows him just what a wonderful, caring individual this man is.  He spent a lot of time with me and as I was leaving the clinic, he put his hand on my shoulder and said, “I know it’s hard but try to have a positive attitude, it will help you in the long run”.

I couldn’t believe it!  A positive attitude?  Was he crazy?  I had just heard that my daughter would die before she was two years’ old and he told me that “some people live up to ten years!”, our fates were sealed, and I had to try to think “positive”?

I left that office and drove along the Vancouver streets.  It was the “other” time the Canucks got to the final of the Stanley Cup.  People were on street corners waving white towels, there were horns pumping, Canucks flags being waved.  Everyone was happy... well, almost everyone.

So what happened next?  My sister had flown up from San Francisco and she was the only member of my family that knew - she told me the exact same thing as Dr. Burdge but she put it in a language that I could understand.  “So what are we going to do?  All lay down and die?”  For some obscure reason, that made perfect sense to me and I realized that this was not the time to wallow in self-pity, this was when I would need my greatest strength.  I would have to look after my baby daughter when she came home from hospital, I could not be weak.  I prayed for strength to get through it.

From that moment on there was no time to waste, I had to make a plan of how we would keep the secret of what had befallen us.  I had to think of a good lie to tell everyone as to why Katie was still sick and I had to keep my own illness a secret too.

I gave clear instructions to doctors and nurses not to leave long messages on the phone that might be overheard by someone visiting the house.  I had to make sure all labels were removed from medicine bottles to stop any prying eyes (my mother) from discovering the truth and, hardest of all, I had to stop myself from breaking down crying.  I accomplished that by biting my tongue when I felt it coming on if I was in company or on the phone receiving questions about Katie and how she was doing.  It was truly a nightmare situation.

On August 31, 1994, Katie died. The next day, it seemed that I was standing in an empty warehouse... that is how alone I felt.  I was tired.  I had stepped up to the challenge but I felt no sense of achievement, just exhaustion and numbness.  Life didn’t seem worth living.  I had just seen the malnutrition and pain my daughter had been through and I felt the same fate awaited me.  I found it hard to find meaning to life at all.

I went in search of a book, something to give me some words at the funeral, some sense to it all - an innocent baby, dying an excruciating death.  And that is when I found Rabbi Kushner’s book “When Bad Things Happen To Good People”. The title grabbed my attention - can anything be more innocent than a baby?  I skimmed through the book at the book store and took it home.  I devoured every word and when I came to the end, I had answers.

We make choices in life - to find cures for illnesses, or to spend our money and time in other ways.  They are not necessarily bad choices but we do have choices.  We have a brain to decide things with and those decisions make us human.

Now I had a choice.. to lay down and die and accept my fate or to remember Katie in the best way I could - by sharing her story with others.  It is perhaps obvious what I chose... but not immediately.  At first, I decided I could not live without her and every second of every day she would be taken further from me.  But very, very, very slowly I knew that I couldn’t wipe our spirits away as though we had never existed.  I judged each new hardship against that fateful day when I discovered our diagnoses.

I remember clearly the first time I laughed.  For three months, just as the doctor told me, I could think of nothing else, but then I watched an episode of Frasier and laughed out loud. I immediately felt guilty.  How dare I be happy?  But it happened. It was a roller coaster ride for two years after that but then I finally gave in to the realization that I would be happy - sometimes - and it would be what Katie would want.  I realized too that I am just human and am not naturally sad.  All humans are born with a sense of humour; babies burst out laughing before they can speak and I knew that I was being drawn into the positive side.  It was the right thing to do.

Enjoying the nice warm weather we had recently, a colleague and I headed out for an evening beer on a patio.  My colleague informed me that tonight she and her husband would be meeting their new neighbours. “What are you going to tell them you do for a living?” I asked.

It’s THE question to ask when you’re meeting someone new.  It is a difficult question for a lot of people to answer. When I was growing up, my father was an independent agricultural market analyst & strategist. Try explaining that to the kids at age 8.  I myself have rarely found myself in positions where my job is easy to explain. For example, when I was getting my Masters degree in Sociology, I often had to explain that no, Sociology is not psychology, no I am not secretly analyzing you, and no, being a graduate student does mean I am an unemployed recent graduate. 

But being in the HIV & AIDS field is a whole other ballgame, because people are really ignorant on the issues, and where ignorance looms, so does stigma.  You’re never quite sure when it’s going to make an appearance.

When I was signing the lease to my new house, I received the inevitable question from my landlord - “what do you do for a living?” I knew it was coming and I had been worrying about how to answer this question. I feared that my landlord would be totally ignorant of HIV transmission methods and would have concerns that I could potentially infect him through using the toilet or you know, breathing in his house.

Even if you don’t encounter stigma, educating people can be plain exhausting. Usually you get one of two responses: complete silence, or a barrage of questions. Sometimes silence, although annoying, can be somewhat relieving. You may remember from my post Living in Two Worlds what it’s like when you’re trying to have a beer but end up lecturing someone on the difference between HIV and AIDS: 

"I am happy to educate people and hope that it does some good. I’m a patient person. But I usually end up secretly wanting to smack someone, especially when their queries have subtle or not-so-subtle undertones of a judgemental attitude - or are just plain stupid. And I often end up wishing for an opportunity to drink my beer without having to explain how HIV is transmitted, or what the difference is between HIV & AIDS, or, as was in the case last week, that my – or anyone else’s - sero-status is none of their business."

I know some people who lie outright about what they do. At a vicarious trauma workshop I heard of one woman who tells people she works in “manufacturing.” Another said she calls herself a dog groomer.

So, my colleague and I hatched a plan to help her avoid having to talk about injection drug use over cocktails. Mostly it involved being honest but vague, by using broad terms like “youth” “outreach” “education” and “blood-borne diseases”.

I deduced my own plan of what to say, too. Borrowing from terms I used when I worked in a hospital, I have now prepared the following script:  I’m in health care. What field? Psycho-social. Where? At a private clinic. 

Okay. So it’s not really the truth but frankly, it’s close enough.

I actually used this on the weekend. When my teardrop-tattooed, 6ft 6”, all-muscle mover asked me what I did for a living, I used the “I work in health care in a private clinic” line. No further questions. Done. Believe me, I did not want to get into the HIV transmission discussion in that moment.

Am I contributing to stigma by not telling people what I do?  Maybe. But in the defence of myself and others who may lie, we talk about the issues all day long and almost ceaselessly put ourselves in the role of advocates and educators. Our work doesn’t end at 5:00; it continues at the salon, the hairdresser, the dentist’s office, the auto-body shop (yeah, that one was a doozy), the bar and at the gym, and on Facebook, Facebook, Facebook.

When you work in an ASO, you don’t have to have HIV to be the recipient of stigma. Sure, many times people make assumptions that I am HIV negative because I’m a young woman, but they may easily assume I am HIV positive, and thanks to the aforementioned ignorance and stigma, that makes me fear discrimination in housing and other areas. So between fearing discrimination and simply needing a break from the role of an educator, maybe a little white lie once in a while doesn’t hurt.

I recently attended a meeting which was part of a series by the University of BC and was funded by the Canadian Institute of Health Research.  The meeting was to report back to the community on research that had been done regarding family caregivers and their role in palliative care.  The topic covered a survey of how caregivers felt about looking after loved ones at end of life stages.  There was a good mix of hospice nurses in attendance and the general public; about 100 people were present.

The presentation commenced by revealing that in surveys many family members felt that they wanted to look after another family member who was dying because they wanted them to be able to die at home.  They had often made promises to the family member.  As time went on, they realized that this was much more than they had originally envisioned but felt that they had to stick by their promise, even though it compromised their own health and well-being.  Some set up baby monitors so that they could do a chore and still hear how their family member/patient was doing.

Most of the time, the deciding factor of whether or not the family member went into a home was largely dependent on their incontinence - especially among men caregivers, who found it very hard to deal with.

The team also looked at rural situations and these were particularly difficult when a family member might have to drive hours with their father/mother, etc. to a hospital for various treatments and the caregiver was often exhausted, especially if they had young children to look after as well.

I well remember looking after my mother when she had just had a stroke and was starting to get dementia.  I was afraid of leaving her on her own since she had already left pots boiling dry on the stove, and I was very worried she would fall trying to negotiate stairs.  This was a common theme among survey participants, where the caregivers became hermits to look after family members.

I could relate to the incontinence factor too and remember one incident when my mother and I went shopping and she was unable to wait for us to reach a bathroom!  I had to take the truck to the car cleaner twice as a result.  It was a horrendous day when I eventually got her to a Canadian Tire bathroom and then ran across the road to buy baby wipes, diapers and new clothes and then race back to the bathroom to change her and throw away her soiled clothing, while cleaning her up too.  Already on anxiety pills, I was completely frazzled and ended up sending my mother home in a taxi while I took the truck in to the car detailers.

For someone who already has an illness, trying to look after a sick older relative is next to impossible but you can feel an enormous sense of obligation and guilt.  Eventually, you have to come to terms with the fact that you may not be giving them the best care and a nursing home is your only option.

I started the search for a nursing home and looked at many.  Unfortunately, when the day comes and your health authority calls you to tell you there is a vacancy, you have to make the decision whether or not to accept the allotted place and then be prepared to move your loved one within 24 hours.  I found this incredibly hard, since the home I wanted my mother in was not the one that they had offered and the thought of leaving her in a one room bedroom, when she had been used to a full apartment, made me extremely sad.  In addition, the pressure I received from my brother and sister (who lived in Spain and California) not to move her into a home and to take care of her myself, was enormous and made me feel very guilty; siblings and family members who are nowhere to be seen, don’t come and visit and yet feel it is their right to add their two cents worth, can only add confusion and misery to an already intolerable situation.

I moved my mother into the new digs and it was gut wrenching to hear her ask when I would be back and hear her saying “please, don’t leave me” - I felt like the lowest of the low... but I felt her safety was paramount and she needed to be in a place that had equipment and personnel 24/7 because she was now in the Alzheimer’s stage.

I put her on a waiting list for the home that I preferred and about six months later, I was once again given the option of moving her within 24 hours.  This was an easier choice because I felt the level of care was so superior at the other nursing home.  After moving my mother, I was glad to be proven right.  She was bathed more, her nurse gave my mother extraordinary personal care and before long, her hair was nice curled, she looked and smelled cleaner and she seemed more engaged with her new friends.

The previous home had put all the patients together but this home had more severe cases and violent people in a separate unit. I knew my mother was happy.  However, with her care finally at a level that I was content with, I could not help but think that this was not how my mother would have chosen to live.  She was a very neat and clean person and was proud of how she looked after her home.  She would have been mortified to think she was incontinent.   I really wonder why we don’t have living wills that give the option for all of us if we get Alzheimer’s and are unable to feed ourselves, are afraid every time a family member leaves the nursing home, only to forget they were even there a minute later or just wheel ourselves around hallways, not understanding the privacy of others’ bedrooms.

At the end of the meeting, I asked the researchers if they had considered what nursing homes would be available for gay or lesbians in the future and whether people were looking after loved ones at homes because the choices in nursing homes was so pathetic.  There were no answers and I found that disturbing because with an ageing baby boomer population, there will soon be a time when many, many more nursing homes will be needed.

At the end of the day, I felt that what "caring for caregivers" really means is helping them care for their loved ones, affording caregivers to get time off and care for themselves - rather like providing the oxygen mask on airplanes to the caregivers first so that they can help those they are with.