When I was growing up, my grandparents had a trailer on St. Joseph’s Island in Lake Huron, Ontario.  My grandfather would often take his (numerous) grandchildren out fishing in the motorboat.  After one such outing when I was eleven years old, my grandmother called to the kids, asking if there were “some strong boys who could help grandpa with the boat”.  My cousin Julia, who was just a few years older than me and who I strove desperately and unsuccessfully to emulate in every way, yelled angrily across the beach: “Just because I DON’T HAVE A PENIS, doesn’t mean I CAN’T MOVE A BOAT!”  In that moment, thanks to Julia’s passion and ensuing tears, I knew I would have to prove to myself and to the family that I was a feminist too.

In those days, as an adolescent, it was all about challenging assumptions about what we can and can’t do, or should and shouldn’t do, as women.  I spent my teen years fighting the man, and periodically butting heads with school administrators, conservative uncles and random members of the public.  As a young adult, I met a nice man (who I am now married to), moved to the city and dove headfirst into the real world.  We lived on student loans and credit cards and really struggled for a few years to make ends meet.  We had crappy part time jobs, often couldn’t pay the bills, and hung out with progressive friends who talked about the world and current events.  The young men that I knew were struggling too, and our common enemy was poverty.

Meanwhile, in my women’s studies classes, the profs railed against the liberal and radical feminism of the past, but in my opinion offered no alternative in postmodern, or third wave feminism.  They still took all of the ills of the world, including poverty, and blamed them on an abstract (natural? inevitable?) force called patriarchy.  What I saw was a world divided not into men and women, but into haves and have-nots – people who have to work hard to survive and people who don’t.  Sure, there were more women on the have-not side and more white men in with the haves, but it was relative wealth that seemed to be the only consistent distinguishing feature.  Patriarchy and sexism seemed to me to be tools to enforce and maintain this imbalance.  This is when I decided that I would not call myself a feminist and would instead focus on social justice and labour activism.

It’s only in the last few years that becoming a mother, working at Positive Women’s Network, and gaining my own voice “separate from the boys”, has led me to a place where I’m re-embracing and redefining feminism for myself.  I still feel strongly that the inequality between women and men is the result of a system that benefits from all kinds of inequalities (as opposed to gender inequality being the root of the world’s evils).  Ironically, in large part, it is my experience in activist circles that has led me back to thinking about “what we can and can’t do; what we should and shouldn’t do, as women”.  In my personal, professional and activist lives, I have had to speak twice as loud to be heard and fight twice as hard to be taken seriously, and I have been sometimes been called a “bitch” as a result.  I have volunteered for groups in which I’ve had to fight to avoid a secondary or “support” role when I was more suited to a leadership role.  There’s also the plain and simple fact that while women in our privileged corner of the world have acquired new roles and taken on new responsibilities, boys are still largely raised without the skills to pick up our slack (especially in the domestic realm).  We’re now supposed to be caregivers and nurturers, but wear the pants and bring home the bacon too.  These are the realities that I face as an active, working mother.

This is just my own personal journey with feminism to date, and you see I’m making progress!  I believe as a society we are making some progress too.  But there’s a lot of work to be done before women are truly on an equal footing with men.

-Miriam

I’m doing some research on HIV and aging, a wonderful term that one wouldn’t have expected even five years ago. I was talking a few weeks ago with several HIV+ women about their experiences. The conversation turned to symptoms: sleeplessness, night sweats, fatigue, and difficulty concentrating. These are typical symptoms pos people experience. But many women will deal with these symptoms during perimenopause regardless of HIV status. So the question for pos women becomes, are these symptoms HIV-related or perimenopause related? Or both? And when should you check in with your doctor?

For women with HIV there has often been a question of whether HIV itself causes change in menstrual patterns. I recently read an article on HIV and menstruation that said prior to comprehensive HIV treatment, many women experienced menstrual irregularities because of dramatic weight loss and wasting. However, for women who have access to HARRT, stabilized weight and improved health with treatment may mean an end to menstrual irregularities at a younger age than non-positive women.

May.

There’s still a lot to learn about HIV and aging for both women and men. How will HIV and long term treatment affect heart health, blood hormone levels, organs that process the drugs? How will aging affect brain function? Dementia has long been one of the frightening signs of advancing HIV disease- can better overall health mean better outcomes? Time will tell. 

And there’s still a lot to learn about perimenopause for all women. Hormone fluctuations that cause extreme symptoms may suggest hormone replacement options. Estrogen or progesterone? Research wages on. 

For now, the women I talked with agreed it’s good to be up to speed on their medications and potential side effects, and to know about what to expect in perimenopause. Some will have major symptoms and some won’t. Talking with other positive women about what’s happening can help- drop by for lunch on a Tuesday or connect with a peer support volunteer (support workers can hook you up). For research information, AIDS Community Research Initiative of America (ACRIA) has a new blog dedicated to HIV and aging.

It’s a new road.

- Janet

The buzz in the HIV/AIDS community these days is all about the International AIDS Conference. I attended one of the conferences in 2002. It was a whirlwind of activity and I wish I had been better prepared for the magnitude of the event. After the first day of just bouncing around aimlessly I made the point of sitting down every evening with the conference guide to choose what I would do the next day. I reviewed my plans over breakfast and then headed out the door. For a week I was immersed in the international HIV/AIDS community. I engaged in dialogue with people from around the world; my room mate was from Israel and she opened my eyes to challenges I had never thought about before. We were staying in a university dormitory with a few hundred other conference attendees. It was very exciting with conversations going well into the night.

This year the conference is in Vienna, Austria and there is a significance about this particular year – 2010 is the year all those great and powerful (read: wealthy) nations had set for universal access to treatment. Now we all know there is not universal access to treatment around the globe. We do not even have that here in Canada. Promises and platitudes. As much as I dislike focusing on the broken promises and empty platitudes I cannot help but see the fall-out from this lack of action. It can be heartbreaking at times.

Rather than amping up resources and support for HIV+ individuals they are actually  diminishing at an alarming rate. This past year major players have shifted their focus towards malaria and tuberculosis initiatives instead of HIV education, prevention and treatment. It’s all important. A life saved is always important. People need resources to combat malaria and tuberculosis. But why is it a matter of this over that? Why pull back on HIV/AIDS now? This is not the time to remove support from people living with HIV. The fight is not over. Not by a long shot.

Last December the International Community of Women Living with HIV closed down. It was an international network for HIV+ women and I visited the website regularly to keep informed and to hear from women around the world. I found it to be a valuable resource and a great tool to build community. Things are also shutting down closer to home. On June, 21, 2010 Voices of Positive Women in Toronto closed it’s doors. It makes me weep. It shakes me quite deeply. I rail against the powers that deem the closure of a support agency for HIV+ women to be a good decision. It is not a good decision and I fear it may be the shape of things to come. 

Despite the fear and deep disappointment I choose to look at our successes. Here in BC there is a resurgence of peer counselling and I’m witnessing a shift in how we advocate for one another. I’m seeing a return to one-to-one support. We’ve always been a resourceful bunch of individuals, especially at Positive Women’s Network. We continue to overcome obstacle after obstacle. I don’t see how a lack of financial resources will stop us from caring for one another. We are in this till the end. I close with this quote from an anonymous author because I love the image it conjures up: “Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming ‘WOW What a Ride!”  Indeed. Hold on tight.

-Monique

Note: To watch live webcasts throughout the International AIDS Conference (July 18-23), visit Kaiser Family Foundation.

Many people looking into HIV Treatment for the first time are concerned about drug-resistant strains of HIV.  It’s no wonder, with all the news out there about a “super bug”.  It is true that HIV mutates and evolves very quickly, and inside a person’s body, it can be resistant to specific drugs that person is taking.  But this is just one piece of the HIV drug resistance story – and maybe not the most useful piece for people who are newly diagnosed and wondering how they will respond to meds.

The thing about HIV’s rapid mutation is that it’s also seemingly random and completely lacking any quality control.  In a person who is not taking antiretroviral treatments (ARVs), HIV produces billions of new copies of itself each day and every single one can be a little bit different from all the others.  According to a recent article published in Relay Magazine, “the quality control process is so poor that every single possible change in the HIV can be produced within one or two days of infection”.  But one variant doesn’t stand out among the others unless it has the advantage.

Imagine you have a bit of a mouse problem in your house, and the mice come in a whole range of colours.  You buy a cat to chase the mice but the cat just can’t stomach blue mice.  The blue mice end up surviving and thriving while all other colours are killed.  The previously colourful mouse colony is now just blue.  In the case of HIV, somebody who is not taking antiretroviral treatment will have a very colourful HIV infection.  Enter the cats!  Nowadays, in the rich world at least, when somebody starts taking ARVs, they’ll be taking a combination of drugs (called highly active antiretroviral therapy or HAART) that attack the HIV at different stages in its replication.

There are now more than 20 different ARVs available in six different classes that attack HIV in different ways and are combined to maximize effectiveness.  Your doctor will help you decide when it’s time to switch up one medication for another.  People who have been living with HIV and taking treatment for many years will have fewer options, but new drugs (and even new ways of attacking HIV) are being researched and developed all the time.  Unfortunately, unlike our mouse and cat example, bringing in other drugs (a blue-mouse-eating cat?) cannot eliminate the HIV altogether.  We do not have a cure for HIV; some HIV always remains in the body.  Or, there’s always a mouse hole the cat can’t find.  The goal of the ARVs is to keep the HIV from replicating, because more virus means a greater attack on your immune system, and because replicating means mutating, and mutating means resistance.  It does feel like a bit of an uphill battle, but studies show that many people are successfully avoiding resistance.

The most important way to delay and prevent resistance is to follow your medication schedule precisely and consistently.  Taking your meds on time, at the same time, and as directed, allows them to work at their maximum effectiveness, attacking the HIV in its replication and restricting its ability to mutate.  While it continues to be hotly debated, it is advisable to continue practicing safer sex with other HIV positive partners so that you don’t risk reinfecting each other with resistant strains of HIV (or “sharing” resistance, so to speak).  Staying away from street drugs is also important, as they make it very hard to follow a drug regimen precisely, as well as increasing the likelihood of sharing needles and having unprotected sex which can also lead to reinfection and increase resistance.

Like so many issues relating to HIV/AIDS, resistance is not black and white.  We can’t even say for sure whether resistance is inevitable.  But we have developed some amazing ways to avoid and work around it.

-Miriam

I do love Dr. Robert Frascino, aka Dr. Bob.

Dr. Bob is sex-positive, HIV positive and out about it, wonderfully frank and funny as he educates people on The Body about HIV transmission and prevention. His writing makes people feel comfortable to ask what can be deemed strange but true questions.

The ongoing theme in these questions is fear and the ongoing answer is to educate yourself, directly delivered by the good Doctor. HIV is not as readily transmitted as herpes or human papillomavirus (HPV), but it’s good to know the transmission “formula” when making sexual decisions, particularly with a partner whose HIV status is unknown to you.  Dr. Bob offers encouragement around testing when he thinks it’s applicable and encouragement to learn more about HIV for future liaisons.

He also catches amazing fly balls. One section he writes lists the questions as “I’m Positive I’m Positive.” People throw him anger and accusations of stupidity. It is the Internet after all, where anonymity can prompt people to, shall we say, abandon their manners.  There was the poster who’d been seen by multiple HIV specialists who all confirmed he was not infected with HIV, yet accused Dr. Bob et al. of incompetence, and insisted he should have access to HIV meds. This poster isn’t the only one with great fear.  

Dr. Bob’s messages are clear: know your risks. Know your status. Get care when needed. HIV is a fearful disease to be sure. But the fear it creates can be bigger than the risk of getting it. Dr. Bob tries to keep it all level. And living with HIV himself, he’s aware of the wonder of life. Gotta love him.

- Janet

This week, we got a message from the folks at hivdating.ca – an online dating service for people living with HIV in Canada.  They were asking us to advertise by providing a link on our site.  We can’t do that, but I thought hey, now there’s a great topic for a blog post!  Dating is pretty universally accepted as “difficult”, because of the pressure to impress.  We all have things about ourselves that we would rather not share, but whether you’re hoping to hook up or looking for true love, you will undoubtedly need to share some of them.  HIV and STIs are definitely on the must-share list.  Long term romantic relationships depend on trust, and as soon as sex is on the agenda, there is a legal obligation to disclose HIV status.  The thought of disclosure and possible rejection is enough to turn anybody off of dating, but it shouldn’t be that way.

We feature Sidney’s story on our website.  After lots of ups and downs, she was successful meeting somebody online.  For many people living with HIV, online dating offers some additional privacy.  If done wisely and safely, it can be like an additional “getting to know you” stage before you even meet, let alone get physical.  There are also a number of sites dedicated to matching people living with HIV and STIs.  Hivdating.ca is actually part of a larger online dating community.  You’ll notice it says “powered by positivesingles.com” at the bottom, and positivesingles.com says “powered by successfulmatch.com”.  So it’s a bit of a get-rich-quick pyramid scheme for the site operators, but the advantage at the user end is that you have access to a HUGE database of prospective friends and possible dates.

I also looked at some reviews that praise the security of these sites.  Of course, they can’t protect you from sharing too much information yourself, but they will protect the personal information you give them.  There’s an added benefit to HIV- and STI- specific dating sites that you might not get from mainstream sites; they can be a place to find support and community even if you are not looking for romance.

As Sidney put it, “Your best defense is a good offense”.  Definitely check out her advice and “Have fun but be careful!”

-Miriam

For the last few years I have served on PWN’s board of directors. We have at times been a small group, with directors coming and going, but we always sought diverse representation and participation of HIV+ women. It has been a satisfying experience and I know I will run for election again in the future.

My first foray into sitting on a board of directors was with the Canadian AIDS Society 10 years ago. I was nominated by my peers and encouraged to give it a try, so I did and much to my surprise, I was elected. I was curious and eager to be involved. I also had no idea what I was getting into! Thankfully I had joined a very supportive board of directors who modeled for me a whole new set of skills. It was at times painful and I often felt awkward, but with perseverance and observation I learned the protocol and felt my confidence growing.

For me, the largest challenge of board work was defining what I was doing – what does a board of directors do? What does a director do? I needed to figure that out for myself and put it into my own words before I could trust my ability to contribute. I reckon board work involves accounting to and representing the membership, overseeing the society’s budget, observing and (when appropriate) evaluating staff performance, appraising potential research and community projects, participating in fundraising, and representing the society in public. I feel most competent as a director when I am attentive to the voices brought to the table and when I have informed myself of the current and emerging issues.

I have always felt a need to volunteer and this need has been expressed in various ways over the years. Sitting on a board is something I enjoy and it engages both my interests and my skills set. It requires me to look at the ‘bigger picture’ while keeping an eye on the details. For example, I am primarily engaged with safe and affordable housing advocacy. I join protests in keeping with my code of ethics, and I try to educate and stir up compassion in others. PWN has portable housing subsidies and I got involved with board work pertaining to these subsidies. Did you know that the money raised for PWN during the AIDS Walk goes towards these subsidies? The details are me staying informed and active; and the bigger picture is my board work around housing research and policy.

I feel confident of the work I did while on PWN’s board and I am excited to see what the new board does in the coming years. I leave with nothing but the best of memories and desire for more.

- Monique

The Annual General Meeting of Positive Women’s Network’s will take place on June 29.  
  

There has been a flurry of events in recent weeks aimed at connecting immigrants and refugees with the health and social services that are available.  At PWN, finding a way to reach immigrant women who are living with or at risk for HIV is like the Holy Grail.  I had the distinct (and somewhat accidental) pleasure of attending three recent intercultural events.  All were successful events at which I learned a lot and make some connections that I think will be useful in future.  But I came home with dozens of business cards, highlighted notes, and ideas that are completely disconnected, and it got me thinking about Canadian multiculturalism, the joys and challenges of Vancouver’s diversity, and the overwhelming sense of disconnectedness that newcomers must feel.

I have some (very limited) experience with being plucked out of my surroundings and transplanted in another culture, because I lived in France for one year in high school, without any previous French-speaking ability to speak of.  But I chose this strange and isolating adventure.  My goal was to be immersed and to absorb myself in the language and culture – essentially, to be assimilated for twelve months after which I knew I would be heading home.  This is completely different from the experience of immigrants who – whether or not they come as refugees – are leaving their homes permanently because they think it’s the best bet to build a better life for themselves and their families.  Shahla Masoumi, who spoke on a panel at the Robert Lee YMCA’s Strategic Connections for Inclusive Communities symposium, said that immigrating is like having your whole life saved on a computer and then having it crash.

I also set up and staffed PWN info booths at the AMSSA Diversity Health Fair and the Abbotsford Diversity Health Fair  – two successful annual public events aimed at connecting immigrants with a broad range of health-related services that they may not be aware of otherwise.  It’s obvious that there are many barriers for newcomers to accessing services and support: language barriers, stigma and discrimination, different cultural assumptions, lack of information, the added psychological stress of immigrating, possibly post traumatic stress disorder, and different expectations about what services might be out there.  For women, there are additional barriers because of the patriarchy that dominates most of the world’s religions and cultures, because women are too busy caring for everybody but themselves, and because we require specialized care around sexual and reproductive health.  I think it is also obvious to most moderately progressive Canadians that we want to try to get past these barriers.  But how?

Since Canada prides itself on celebrating cultural diversity and on taking a multiculturalism rather than an assimilation or segregation approach to immigration, how can we possibly find a way to reach everybody?  Maybe the first step is to recognize that there is no Holy Grail … there is no one solution that will work for everybody.  Just because print materials are translated doesn’t mean they will be used … and when it comes to interpreters, much is lost in translation, including humour and personality.  Even the trend toward organizing groups of peers to support each other within a given ethnic community (which I think is a good idea) runs into problems when there is stigma, power imbalance, or distrust within that community.  Marja Romic, another speaker at the Strategic Connections symposium, spoke out against the tendency to think of immigrants as “a group” rather than as individuals.  While some speakers talked about the importance of learning and being sensitive to the cultural norms of a particular cultural group, others were critical of this approach, which they argued focuses too much on “dividing into groups” and not enough on respecting everybody’s diversity, regardless of race, ethnicity or language.

Maybe part of accepting multiculturalism is accepting that one approach won’t work for everybody, which might just mean that we will always be juggling disjointed information and responding to it in disjointed ways.  What do you think?

-Miriam

Positive women are having multiple healthy children and enjoying the joys and challenges of parenting. But being an HIV+ mom and dealing with questions from people who might not know about HIV can be stressful. Questions around breastfeeding alone can be tricky for women who haven’t disclosed to everyone in their community and wish to maintain their confidentiality.

Having a newborn for the first time or the fourth time is an adjustment. Want a confidential space to talk about your pregnancy ups and downs? Those first months of sleeplessness? How to maintain privacy for you and your baby? This June 14, we’ll be offering a support group for women who are pregnant or have had a baby in the past two couple of years.  Share your thoughts, worries, successes and delights with other women. Know you’re not alone.

The group is a partnership of Oak Tree Clinic, YouthCO and Positve Women’s Network. Lunch will be served, and it’s all free of charge if you’re a member of PWN, YouthCO or Oak Tree.

Pregnancy and New Mom Support group
June 14, 12 Noon to 1:30 PM
PWN’s Meeting Room: 103-1033 Davie Street
Please RSVP in advance to Dulce at Oak Tree: 604-875-2250. Bring your belly, bring your babe! If you need a childcare subsidy, please contact Dulce for more information.

 - Janet

It was great to be at the Canadian Association for HIV Research conference in Saskatoon earlier this month. Lots of interesting stuff unrolled at CAHR, but one plenary session in particular lit me up. It looked backwards at the origins of HIV and forwards at what we can do to bring an end to AIDS. 

Friday morning was bright and sunny in Saskatoon, but a dark hotel room housed a crowd to hear Doctors Mike Worobey and Mark Tyndall. Worobey’s work is dedicated to exploring the origins of HIV, a puzzle that hasn’t been solved, nor its findings fully agreed upon. Understanding how HIV has evolved could lead to new developments- perhaps a vaccine (although Worobey admitted he isn’t hopeful for that, given HIV’s mutation rate), or at least microbicide options. Tyndall cast his eyes forward, stressing the power we do and don’t have to limit the spread of HIV.

Worobey presented an overview- variations of SIV (simian immunodeficiency virus), the precursor to HIV, have led scientists to believe that it’s been around for at least 100,000 years. Based on the analysis of the diversity of HIV in samples recovered from around 1960, Worobey suggested that SIV made the jump to humans as early as the turn of the twentieth century. (He cited Beatrice Hahn’s work on the “how.”)

Although HIV had established itself in humans, it didn’t affect a large population until industrialization took off between 1894 and 1956. With new roads connecting emerging cities and development of business in Central Africa, people moved around a lot more, had more sexual partners, and therefore facilitated the spread of HIV.  Worobey emphasized that human behaviour has spread HIV, and human behaviour can stop it too- HIV is not as infectious as the flu, for example, and behaviour modification with the prevention tools we already have could turn the tide.

Ok, done.

But obviously it’s not that easy.

Dr. Mark Tyndall envisioned a world after AIDS, providing a timeline that went forwards rather than back. He too stressed the importance of our behaviour in the spread of HIV, but he took a social sciences perspective, emphasizing that the playing field isn’t even when making behavioural decisions.  Disparities such as gender, poverty, racism, mental health, governmental negligence and governmental ignorance all play their parts in making HIV prevention a challenge on the individual level where it counts.

In order to turn the tide on HIV, Tyndall argued, we need some significant change. We need to convince those with power on a big scale, like governments, that they need to support change through harm reduction policy and programming. We need to convince those with power on an individual scale, like the man in the moment with a condom available to him, to use it. We need better education on HIV, government support for harm reduction programs like needle exchanges, condom distribution, drug treatment and social programs that address the underlying determinants of health. As societies, we need to change gender disparities so girls and women have more power.  Not so easily done, he admitted. But humanly possible.

What fired me up was this doctor’s inclusion of a wide range of realities that affect health. Health is so much more than our physical bodies, and Tyndall acknowledged that in his call for social change. Yes, there’s a lot of work ahead and it’s international in scope. But looking at the work, breaking it down into pieces, and taking on what we can with passion and conviction is an effort we can all make. As PWN’s vision states, Action and Leadership on Women and HIV/AIDS. Every step has to count.

- Janet