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

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.

Today I’m inspired by the commentary of four amazing women who have decided to do very challenging work in challenging contexts.  Amber Christie, Dulce Feder and Dr. Ruth Elwood Martin presented on a panel together at PWN’s annual SpringBoard conference last Thursday.  They all work in some capacity in research and healthcare delivery for women in the prison system.  Maxine Davis is the Executive Director of Dr. Peter Centre, which operates a residence providing intensive, 24-hour nursing care for previously homeless people with a combination of severe mental health and addiction issues.  Her recently published piece in the Vancouver Sun highlights the need for this kind of supportive housing.  These two areas of work are not directly related, but one of the main health challenges faced by incarcerated women is also a key hurdle facing the Dr. Peter Centre residents, and that is the lack of adequate supported housing and healthcare when they either get out of prison or get off the streets.  In both cases, the lack of housing and care keeps these women and men coming back – to the streets, to prison, and to the hospital.

Dulce Feder is the Nurse Clinician at Oak Tree clinic and she coordinates the outreach HIV care visits to Alouette Correctional Centre for Women (ACCW) in Maple Ridge, BC.  Amber Christie and Dr. Elwood Martin work together on the Women In2 Healing project, which seeks “the empowerment of women inside and outside of prison in their emotional, mental, physical, and spiritual healing through the participatory research process”.  They are also involved in Doing Time, a participatory research project which supports ACCW women to develop an “Action Health Strategy” to try to keep them connected to services and care after they are released.  And here’s what really struck me.  When asked about their health, incarcerated women were most concerned NOT about nutrition, doctor’s visits and dental checkups, but about housing and relationships, especially relationships with their children.  This speaks volumes for the need to approach women’s health differently.  For many many women, our lives and our very sense of wellness and being are tied to our families, and in particular to our children.  This is a completely foreign notion in traditional corrections. 

I read the story in 2008 about the ACCW’s mother-baby program being cut, and I felt sad for the mothers and babies that would be separated.  I recognized it as a regressive step for the women, but it was Amber Christie’s words last Thursday night that really struck a cord.  “Babies change everything,” she said.  This is the most obvious, common-sense truth that nobody in their right mind could possibly deny, but it brought tears to my eyes.  “Having those babies around changed all of the women – not just the mothers”.  Real health and wellness is about so much more than nutrition and medicine and we have much to learn from these women who are working and living “on the front lines”.

-Miriam

What creates “community"? This is a question that was on my mind the other night at AccolAIDS, as I sat surrounded by warmth of spirit, laughter and fantastic people at BC Persons with AIDS Society’s fundraising event. I was so happy for the people who were nominated for their work, and tickled that some true friends got to take the stage and speak about what they do with amazing dedication. What I saw in that room was a mix of PWAs, health care providers, pharmaceutical reps, donors, and other community folks who are both paid staff and volunteers. This mix of people and passions creates supportive, kind, educational nets that the weary can fall into when necessary. Nets that provide firm enough footing to take another step. Nets that provide a wall to back up against when you need a vantage point for perspective.

The evening was a celebration of the work that’s been done and it was also a celebration of what is possible when we work together. In talking with a friend afterwards, she commented on how it must be difficult for non-profits that have to “duke it out” for funding pots, and particularly in these economic times. There’s opportunity for groups to get testy, sure, but I don’t see it if it’s happening. That’s one of the amazing things about working in this HIV community.

There really has been an effort amongst organizations that services aren’t unnecessarily duplicated, and I think that’s part of it. Organizations have evolved and there’s been consistent effort to create opportunities for groups to get together and share information about what they’re doing so that work is cooperative and comprehensive. There are local gatherings like the Community HIV/AIDS Committee, Women and Children Committee and the provincial efforts of the Pacific AIDS Network, which not only helps organizations to connect and share resources, but also helps to encourage PWA leadership skills development and provide professional development support.

The people in this community care about what happens. I love that.

Before I sign off, I’d like to send a special shout out to Monique Desroches, the recipient of the Kevin Brown PWA Hero Award. Monique has been an advocate at local, provincial and national tables on behalf of women. She’s currently Co-Chair of our Board, and her passions include housing access and microbicide development. Congratulations Monique!! For a complete list of AccolAIDS winners, visit BCPWA. 

- Janet

When I was a little girl, I dreamed of becoming rich and famous so that I could single-handedly save the world.  At the top of my “world that needs saving” list was a little Caribbean country called Haiti—“the poorest country in the world”, as I had been told.  I am no longer a little girl, and instead of being rich and famous, I work in the humble HIV prevention field.  While I no longer believe it’s a one-woman gig, Haiti is still near the top of my “world that needs saving” list.  Haiti has the highest HIV infection rates in the Caribbean and is second only to the worst affected sub-Saharan African countries on a world scale.  The January 12th earthquake is being called one of the most devastating natural disasters in human history, and we are all bombarded with news and images.  In hopes of blogging something original, I have tried to focus my attention on how the HIV/AIDS community is responding to the quake.

A bit of history … The first Latin American country to gain independence and the first black-led republic following its 1804 slave rebellion, Haiti is a nation with a proud and rebellious past.  But a string of oppressive dictators have left the country without infrastructure and plagued by poverty and corruption from which it has not been able to recover.  And now this …

Haiti was the first developing country to document cases of AIDS, in 1983, when an organization called GHESKIO (a French acronym for Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections) published their experiences in the New England Journal of Medicine.  Since then, the Gheskio clinic has been named a “Public Utility” by the Haitian government and is recognized internationally as a centre of excellence, leading the way as a research and training centre.  According to a fabulous piece by Ianthe Jeanne Dugan, published Wednesday in the Wall Street Journal, Gheskio is one of Haiti’s few world-class institutions.  The clinic, headed by Haitian-born infectious disease specialist Dr. Jean Pape, played a role in securing a safe blood supply, and has developed several prevention campaigns, that seem to be having some effect.  According to the UNAIDS 2008 Report on the Global AIDS Epidemic, HIV prevalence among pregnant women dropped from 5.9% in 1996 to 3.1% in 2004 and has remained stable since then.  The Gheskio pharmacy tracks whether clients have picked up their antiretroviral treatment, and if they have not, an outreach worker is sent to their home.

“The earthquake has set us back about five years,” says Dr. Pape, yet Gheskio’s disaster contingency plan has been remarkably effective.  Radio ads announced to the population that the clinic is still open for business and told people where they could go to pick up their HIV meds.  Many of the staff found their way to work, some walking miles through rubble and chaos to get there.  The clinic has been able to see 85% of their usual caseload since the quake.  What struck me the most in reading Dugan’s article is the fact that the clinic, which has suffered an estimated $10 million worth of damage, is also treating more than 2,000 earthquake victims.  While making sure Haiti’s HIV positive population get their meds is the number one priority, the clinic has put all research initiatives on hold so that they can focus on treating and providing for the injured.

To read more about Gheskio and their amazing earthquake response, visit their website.  They need $300,000 immediately for food and medicine, and will except donations of $1 to $2000 using PayPal.

-Miriam

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

I’ve been reminded recently that grief is a huge thing. That might sound strange, working in the field I do, where grief can be an ongoing presence and often is. HIV diagnosis can prompt grief for any number of reasons- an abrupt change in expectations and hopes, recognition of multiple losses in relationships and health. Of course death brings with it many emotions, and often grief is at the forefront. Grief is an inevitable part of life, and a particularly inevitable part of being in the HIV community. Before the dramatic changes in life expectancy that HIV treatments brought to the industrialized world, deaths were far more common and frequent. Grieving was woven into the HIV community by necessity.

We recently set up a memorial space where PWN members can mark their grief. It’s a small corner in the PWN drop-in, a space where women can record thoughts or pictures, light a candle. Making this kind of space, however small, has been an issue for years. We’ve recognized the passing of members in different ways, and talked about a permanent space for it. Some members have felt strongly about recognizing those who’ve died, but others feel it’s a depressing thing to face every time they come in. It hasn’t been easy to settle. Both perspectives are understandable.

But HIV is a life threatening condition that causes people great distress and having a place to recognize that is important. Granted, HIV can be treated, making it less of a life-threatening condition than it used to be, but I must add, for some. Access to treatment is an issue, even here in industrialized Canada. (See page 194 of the Pathways to Healing Report, released in 2009). But the fact that it needs lifelong treatment and vigilance makes it a life challenge that can have grief associated with it.

And women don’t just die of HIV related conditions, either. There are other factors that can lead to a woman’s death- violence against women, the agony of addictions, inaccessible medical care. HIV can be tightly woven into these conditions. Having a place to open up about losing someone can create a safe place to talk. Without a place to open up, or safe people to do it with, the emotions of grief can haunt us all, and break us into pieces.

Pos blogger "fogcityjohn" recently wrote on meeting someone for the first time and spontaneously recognizing a moment of connection through shared grief. It was just a moment, and he regretted that he moved on quickly and didn’t do more to honour it. He wrote, “In grieving, we… honor those who have touched us deeply.” The memorial corner is part of the drop in, just as other parts are: shared meals, shared health challenges and solutions, births of babies, new chapters in life. It’s part of our community.

- Janet

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

Many years ago I read an essay about women in Vietnam working to rebuild connections and communities after the Americans pulled out. Someone criticized their efforts, saying they were as useless as water. But the women responded that water is a great force: just look what it can to do stone over time. I may not have the quote perfectly cited, but it captures the idea that has stuck with me all these year. I believe in the power of every woman. Even what looks like the smallest gesture is connected to other gestures and actions, and has the capacity to make great change.

We need some great change here at the start of a new year and new decade. Late last year, the World Health Organization reported that HIV is the leading cause of death in women aged 15-44. One of the primary routes of infection is unsafe intercourse. Microbicide research has taken another hit, so a prevention tool that women could use is still beyond science and well beyond widespread distribution worldwide. Unfortunately, challenges to women are widespread, worldwide and kept up daily. As blogger Melissa McEwan says, we live in a culture that perpetuates sexual violence and the myth that women are at fault for it. This attitude is available everywhere – just look around. And seeing that many people still don’t know about safer sex, our work is cut out for us.

I can see some of the challenges, but not all. But I’m not disheartened, because I also see people who are making a difference every day. How did I find out about Melissa McEwan’s blog? Through an email forwarded to me by women (thanks Dalya, thanks Melissa). Even a simple keystroke to send a message on can help shift things.

Happy New Beginnings. Happy change.

- Janet

 This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

In the AIDS Service field, we do a lot of reminiscing about the good ol’ days and lamenting that activism isn’t the same as it used to be. Of course, I can’t personally remember ACT-UP and the early days of AIDS activism, because I was preoccupied with elementary school.  But I’ve wholeheartedly adopted this movement and I do believe in solidarity. While I can’t necessarily reminisce, I think I can relate to my colleagues’ sentiments.  By now, President Obama lifting the travel ban is sinking in for many.  This post by Bonnie Goldman at The Body, got me thinking.  She finishes by lamenting that “if there was more AIDS activism, we could’ve gotten this law changed long ago”.  What can activism change?

For those who don’t know, the US has denied visas to people living with HIV for 22 years.  Obama announced in late October that he’ll be lifting the ban and the result that the U.S. will host the International AIDS Conference in 2012 is quite something.  I couldn’t possibly sum it up better than Elizabeth Pisani: “That’s unmitigated good news for people with HIV, their lovers, friends and families, as well as for a lot of US employers who can’t import some of the best and the brightest simply because they have a not-very infection virus that can only be transmitted in a tiny number of well-known ways which we can protect against with safe, cheap technologies”. (I *heart* Elizabeth Pisani!)

Back to AIDS activism … I think Goldman and my reminiscing colleagues can cut themselves some slack.  Activism doesn’t come in a can; it can’t be turned on and off like a tap.  Activists are feeling busy and stretched – overwhelmed by the number of important issues worth fighting for. (How do you choose between libraries, services for autistic kids and AIDS services?)  But I believe people do band together and can make a difference when there is a big important issue that affects us all.  The glory days of AIDS activism were about securing basic services and respect for people living with HIV; it was a struggle for existence, and people came out to participate.  We’ve come a long way, but things do run in circles: it’s needed again, and now. Here in BC, groups who have received notices of funding cuts are rallying in response, along with supporters across the province.  Cancel The Cuts campaign launched December 1; a rally is set for December 18 in Vancouver at noon. People will come out to demand that groups receive funding to provide basic services. Whether you remember the good ol’ days, or not, come out and be an activist! 

-Miriam

 This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

Last week’s retreat was another huge success and many women came away connected and recharged, according to the evaluations. Retreats are unlike any other thing we offer. They are a whole weekend of symbolic unpacking by a variety of women with a range of life experiences (one attendee commented on the diversity of women and how well everyone got along). Women unpack their sadness of being diagnosed and feeling they can never look at life with hope again. Women can unpack their worries about going on treatment and how it might affect their bodies. Women unpack their long-term experiences with HIV, how they have made changes and stayed healthy. Women unpack their vulnerabilities and their successes, and share them.

All this unpacking makes change. People feel lighter, less burdened. They feel connected to others. They feel when they go back to their regular life that it is permanently changed. The space where we hold the retreats can handle it. The common room where much is shared is airy, the corridor leading to the bedrooms is wide, open. There is a lot of room for experiences. This is a place where women can talk, walk away, absorb, and revisit the same topic later with new thoughts that have arisen. This is how change happens and new possibilities grow. 

Retreats aren’t easy. Going away with a group of people who share a diagnosis that for many women is private and challenging can make for an emotional weekend. Disclosure is obvious, but not necessarily easy. Support staff are available, and there are always women who have been on a retreat before and know how intense it can be. A number of people commented on how much hope they got from talking with long term survivors. Retreats are a reminder of connection and healing at a deep level: one person reaching another. They define the “network” in PWN.

On Sunday, participants pack their belongings. But they also leave some stuff behind, and take new gifts with them. One woman said she’d be taking home “the laughter.” And that’s something great to pack.

- Janet

The next retreat will be in the spring.

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network. 

Sangam tells the story of a woman who had our number for years before she made her first nervous call. She lived in a very small community and was terrified people would find out she was HIV+. When she did call (and attend a retreat soon after), she told us her whole world had changed. Meeting others can do that for a person.

HIV can’t help but change one’s expectations. But life does go on. And for women who come to PWN, they see that every day. People can live long and healthy lives. It’s not all gloom and doom. We’ve collected stories from women who share how they’ve faced diagnosis, treatment decisions, getting out of unhealthy relationships, becoming parents.

Life goes on. Sharing it is good. 

- Janet