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

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

When I started in this work 16 years ago, there were few treatments and little hope. But people are resourceful thinkers, and alternatives to medicine were hot. Meditation groups, yoga, and the power of positive thinking were just a few things that were embraced. Having a life threatening illness that often meant a rapid death with little help from Western medicine challenged people to get their minds around these different approaches. For some it meant getting clean from drugs or alcohol, for others it meant looking at unhealthy relationships and deciding to leave them. Through these changes, there were people who came to the notion that “HIV was the best thing that ever happened to me.”  But there were also those who didn’t reap the perceived benefits of learning they had HIV.

Louise Hay’s thinking  was popular in those days. Louise Hay was writing about the connection between mind and body, implying that you could heal yourself from a disease like cancer. Not everyone read her books, but the ideas of her books floated in the air and took weight in conversations. People felt the possibility was there. 

“I hate Louise Hay,” spat a support worker one day as we debriefed.
“Why?”
“Because her philosophy of you can heal your life just adds to the guilt that PWAs have if they can’t.”

And he was spot on.  There were those who plunged further into drugs and alcohol, and lost any hope they’d ever have a healthy relationship because HIV would keep them trapped (abusive partners often helped reinforce this notion). And there were those who tried like mad  to heal their lives and got sick and died anyway.

I see echoes of that in this day and age of HIV being hailed as a “chronic manageable condition” for those who are on treatments (and not everyone is, but that’s another story). I’m not dissing treatment by any means, but it hasn’t made things manageable for everyone. I was grateful to see a recent blog by the smart and funny Dr. Bob to this effect. Dr Bob, himself HIV-pos and by his own admission very privileged, highlights some of the hefty challenges that HIV still brings, both physical and emotional.

How people speak of their illness can be influenced by language. I thought of this as I read Judy Segal’s piece in the Vancouver Sun about being a cancer survivor who wasn’t so sunny about her diagnosis. She wrote, “If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you’d better be quiet. So I thought I’d better speak up.” She expresses a need to be honest about not feeling positive at times, and feeling pressured that she wasn’t keeping up the optimistic narrative that those diagnosed with cancer are supposed to have. It so made me think about those living with HIV.

“I reject a survivalism that seems to blame the breast-cancer dead for not trying hard enough,” wrote Segal.  An echo to my support worker friend’s lament that made me nod as I read and sipped my coffee. 

I’m with the optimists that say you can change your attitude about things and that in itself can change your overall health. Optimism is important. But it is one of many avenues a person might travel in a day when dealing with life changing diagnoses like HIV or cancer. A presumption that a person should always make the best of it is like putting a bearing rein on horses that holds their heads in place and can inhibit them from putting their heads down into hard work. It’s not the best support we can offer. The best support is to listen to what’s happening in the moment. 

-  Janet

“Our gender (as transgender and transsexual people) is … invalidated, insulted, and hated. We are denied personhood because our gender is not heteronormative enough: Proper men do not want to become women, and proper women do not become men….”  writes Lisa, of Questioning Transphobia.  

Lisa’s words well describe the discrimination that many trans women face: the message that they’re not "right" in a fundamental way, or so says mainstream society. When it comes to women-specific services, the discrimination against trans women can be particularly pronounced, and many trans women are left without services because they aren’t "women enough."

There’s a history of struggle when it comes to including all women in women-focussed services, and the feminist movement overall. It’s not just trans issues- race, class, sexual identity and ability have also been conflicts in determining what the issues are for "all" women. (There are many debates on this, but for a piece on the intersection of race, class, sexuality and trans issues, check out this one on conflict at the Michigan Womyn’s Music Festival). The issue that’s brought up in relation to including trans women is the idea that trans women were brought up as males, and theoretically carry a world view of male privilege. The ringing question is, how can trans women understand what it’s like to deal with the oppression of being a girl/ woman when they were brought up as males? It’s an argument that has been used to bar trans women from events and services.

Vancouverite Kimberly Nixon famously took on the issue when she challenged the Rape Relief Collective’s refusal to allow her to become a counsellor because they felt she didn’t have the necessary life experience. She took her Human Rights complaint  all the way to the Supreme Court of Canada. She eventually lost, but did contribute to the awareness of trans issues among women’s groups and services across the country, creating a lot of discussion about discrimination and inclusion.

Ongoing and ever present discrimination can contribute to risk behaviours when it comes to HIV and other STIs.  Not only do people eschew safer sex, making themselves vulnerable to infection, they also turn to alcohol and drugs as a coping strategy. HIV+ Janice Rodriguez writes candidly about discrimination, violence, and fleeing to the streets after too much brutality at home.

While trans women face daily discrimination, there is cause for some triumph in the form of two new resources in the Lower Mainland. The first is particularly sweet: Lu’s Pharmacy for Women has now opened its doors a little wider to include trans women. When Lu’s opened last summer, they wouldn’t serve trans women. There was reaction to this locally, and in web communities all over the world. The Vancouver Women’s Health Collective recently confirmed that Lu’s has changed this policy. We’re very happy to hear it. 

Additional good news in the community is that Vision Quest Recovery Society will be operating Hart House, a recovery centre for trans women. Amidst the growing chaos resulting from budget cuts to many organizations, it’s great to hear of something going in the right direction. 

Positive Women’s Network is trans-inclusive- all positive women are welcome here. We’re glad to have additional resources in the community and hope this is another step in breaking down barriers that exist for trans women. 

- Janet

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.

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. 

Dr. Khami Chokani shocked us recently when he told the press that HIV would kill 15 to 30 percent of Saskatchewan’s Aboriginal population within five or ten years.  He also compared the situation on reserves in his province to the epidemics in parts of sub-Saharan Africa.  Given the three-fold increase in infection rates since 2004, it is understandable that the medical health officer for the Prince Albert Parkland Health Region is alarmed and wishes to incite a pro-active response from government and community.  It is also understandable that his claims ruffled some feathers, and while he has not formally rescinded the comment, he and his colleagues have admitted that this worst-case scenario is unlikely.

If there was some sort of competition to be recognized for having the worst HIV epidemic, then certainly, the “areas of sub-Saharan Africa” to which Dr. Chokani refers would take the cake.  That being said, we have yet to learn the full extent of our own epidemic in Canadian Aboriginal communities and the numbers that we do have are shocking and frightening.  Of the 174 people known to be HIV positive in Saskatchewan in 2008, more than 100 are Aboriginal.  In Canada overall, Aboriginal people make up just 4% of the general population, but account for up to 15% of HIV infections.

Similar to the sub-Saharan African epidemics, Saskatchewan’s Aboriginal HIV infection rates are on the rise among women, young women and pregnant women.  There have even been a startling number of babies born with HIV in Saskatchewan’s Aboriginal communities—something that is essentially completely avoidable.  This is perhaps where the specific similarities end, since the epidemics in sub-Saharan Africa are mostly driven by heterosexual sex, while it is overwhelmingly injection drug use that is fueling the spread of HIV in Canada’s Aboriginal population.  Understanding this epidemiological difference is essential to shaping a response.  Also an important difference—Saskatchewan has the resources and means to address an HIV epidemic in a way that sub-Saharan Africa does not.

The higher-ups in Saskatchewan’s medical community were quick to defend their HIV/AIDS strategy while Aboriginal AIDS activists took the opportunity to highlight the issues and challenges that they are facing.  As Janet pointed out in her July 3rd post, "Health is made up of many threads, or indicators, woven together, influencing each other."  More and more studies are looking at the connections between psychological well-being and physical health, between depression and substance abuse, poverty and overall wellness—and how all of these things play a role in one’s vulnerability to HIV infection.  Historical and systemic disenfranchisement and the uprooting of whole generations from their families and way of life (residential school system) have had devastating consequences for Canada’s Aboriginal population.  Dislocation, despair and hopelessness feed violence and addiction, and vise versa.

While it is important that we steer clear of the dishonest apocalyptic HIV-hysteria prevention tactics of past, the real story for Aboriginal communities is dire enough.  Let’s not let the-powers-that-be brush this off because one doctor got caught up in the moment and inflated the numbers to make a point.

-Miriam

This weekend a group of women will head to Bowen Island to learn about HIV treatments, HIV and medicinal marijuana, the law and HIV disclosure, terachings from the sweat lodge, and have some fun. It’s retreat weekend, and for three quarters of the women going, it will be their first time on a retreat. It’s not easy to meet a bunch of strangers and talk about your diagnosis, but year after year, women do so and come back smiling. We’ve been offering retreats for 15 years now (we’ve even developed a Retreat Planning Toolkit to help other organizations), and we’ve learned that providing a safe space for women to connect and learn about HIV can change people’s lives forever.  

Finding a place to connect with other women with HIV is rare (PWN is only one of three organizations in Canada that focus exclusively on HIV in women, and we’re the only one west of Toronto). For BC women who live outside the Lower Mainland, meeting other positive women can be downright impossible. A third of the women attending this retreat are from outside the Lower Mainland, and this weekend will be more than a getaway -  it will provide opportunities for them to make connections to carry away from the weekend and home. One attendee at the fall retreat reported on her evaluation, "This was my first retreat and it was awesome!"

We always have more applicants than spaces, and we do have to make some tough decisions. Women who’ve never gone to a retreat are prioritized, as are women from out of town, followed by women who haven’t gone for a long time. Sadly, we have to turn some women away. For those who won’t make it this weekend, we will be holding another retreat in the fall: October 2-4. Application forms will go out in the summer, so if you want to attend, or know someone who would, please contact us to make sure you’re on our mailing list.

- Janet

Dr Susan Burgess elaborated on our theme of Space for Health with her keynote address, making connections between her work in Lesotho and Canada. 
   “Relationship is everything,” she said. People must feel they are cared for, connected and able to trust, regardless of their “space” physically, mentally emotionally. Everyone needs to feel valued. The conversation that followed had people nodding in agreement that HIV itself is not necessarily the problem, but social inequalities are, including the stigma and discrimination that follow HIV wherever it goes. I for one am energized to continue to confront these challenges.

Many, many thanks to the women living with HIV who shared their activist journeys, and the theatre troupe’s energy and enthusiasm (“You rock!” said one of the evaluations). Thanks to Shayna Hornstein for bringing in new ideas for stress management (people were grinning as they left) and Donna for her yoga at work session. Thanks to Dr. Burgess for taking space for health international. And ouf course, thanks to the staff here for all the support in pulling it off. See you next year.

- Janet