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

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

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

The days are getting longer (we did just “spring ahead” after all), the sun shines now and again, and my hay fever is driving me crazy … yes, it must be Spring. At Positive Women’s Network, that means SpringBoard! Join us for our annual conference, on Thursday April 22nd, from 4:00pm onward, at the Century Plaza Hotel (1015 Burrard St) in Vancouver.

This year’s theme, Confines of Health, focuses on the factors (positive and negative) that shape our health and our ability to access healthcare. In a workshop called We’re all in it together, Sharon Milewski will showcase the WISER project – a partnership between PWN and YouthCO – and will explore the barriers, challenges and strengths that young HIV+ and HepC+ women face. Emily Quinn and Sangam Grant will share what they have learned in their work educating and learning from geographically isolated women through Sangam’s service provider trainings and Emily’s LEAD (Leadership, Engagement, Action and Dialogue) project research. Monique Desroches’ Sacred Spaces workshop will look at acknowledging our whole selves as body, mind and spirit, and creating a sacred space to breathe and meditate.

We are thrilled to welcome three panelists for the keynote session this year – Dr. Ruth Martin, Dulce Feder and Amber Christie, who will share their experiences supporting women to develop health strategies while they are in prison and after.

SpringBoard is FREE and open to all members of PWN and other interested participants, including service providers. Men are welcome.
For more information or to Register, contact PWN at 604-692-3000 or pwn@pwn.bc.ca.

I hope to see you there!

-Miriam

Just back from a conference in Montreal, I’m a little tired, sweetly full of things to follow up on, and amused by the fact that because of the damp, it feels colder here than it did “back East.” The Canadian AIDS Society Leading Together 2010 conference attracted people from all across the country to share knowledge, network and band together to discuss the challenges faced by PHAs.

How to grab the energy of what happened? The great passion with which people address the homophobia, the serophobia, sexism, discrimination and even the glorious advances in treatment that spell better, longer lives for PHAs was revealed in posters, workshops, plenaries, and displays.

For example, take The Electronic Wake. This art installation in Montreal features “techno-flowers” with petals made of shoes and the face of the flower as a space where video testimonials play. People are invited to send a message, express what they know or feel about HIV, show solidarity, or make a comment. Filmed at community events in Montreal, the garden of techno-flowers is on display at the Montreal Parc L’Espoire (Park of Hope), the AIDS memorial. Talking to one of the creators of the project, I felt as if I was looking into a summer afternoon in Montreal, full of possibility and energy.

Miriam and Melissa took a lot from HIV Edmonton’s session about incorporating art and creativity into everyday programming- the appeal of the senses to the mind. Marcie said the session which emphasized the power of storytelling in educating the public was a great reminder that people connect people, and stories are our way of weaving meaning into our lives. Appeal to someone on a personal level and you have a new way to get your message across, whether it’s health promotion or fundraising.

Sunday’s plenary session on the criminalization of HIV featured the voices of several people who painted the complex picture that it is. Yes, it’s important for PHAs to take responsibility for disclosing their status to sex partners, but it’s also the responsibility of sex partners to protect themselves. While all speakers commented on the harshness of the law in managing people’s personal lives, there was also general acknowledgment from PHA speakers that the option for legal recourse needs to be in place. Darien Taylor spoke of HIV positive men who purposely put their partners at risk as using HIV “as a form of violence against women.” This was echoed by another presenter, who also spoke about the cultural challenges of talking about sex and HIV in communities where it’s just not done, and to do so means risking violence.

Sangam provided a workshop on her "HIV basic training" around the province with transition house workers, and we also had two posters on display. We profiled our You Should Know project, a social marketing health promotion campaign aimed at preventing STIs. Since we often receive calls from people across the country wanting to know more about our retreat program, we  presented a poster on that as well.

There are many ways to educate people through their fears, prejudices, and hopes. There’s much to do. The tension between what could be and what things currently are fuels this work, and it’s a vibrant, committed community that takes it on.

- 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.

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.

I’ve worked at PWN for 16 years now, and it’s been an incredible privilege to do so. I’ve seen the treatments options for HIV develop, change lives and make new generations possible. Most importantly, I’ve been witness to many women’s stories. I have been the lucky ears to hold the details of diagnosis, disclosure, and adjusting to life with HIV. I’ve heard fears and uncertainty. I’ve heard about challenges met and managed, discovered love, babies. My latest project, You Should Know,  is partly based on the gift of these many stories.

I’m not the only one on staff who has heard from women who don’t have HIV, but want to know about it. They sidle up at information tables and health fairs. They call and ask how to navigate safer sex, what to do, what to avoid? You Should Know responds to those women more extensively than can be done on the phone, or through email, one at a time. You Should Know is a health promotion/ STI prevention campaign specifically directed at women over 40, and in particular, women who are just getting back into the dating scene. From many discussions with women, it’s clear that they want info, but find the youth focused prevention information doesn’t hit the questions they have. Being over 40 or post-menopausal doesn’t mean a lack of risk for STIs, and body changes during perimenopause and post menopause can change one’s sexual experiences and vulnerability to STI infections. Communicating with partners about safer sex may not be something these age groups have had to talk about in a long time, if ever. 

You Should Know is an expansion of HIV prevention, an expansion of the community that’s been created through PWN. With it I hope to support women to get the info they need to feel confident and capable talking to their doctor about sexual health and their partners about safer sex. I hope women will feel comfortable talking to each other. Check out the site and share it with your friends, sisters, moms, grandmas.  Let me know of links for women in midlife I can add to the resources page. Youshouldknow.ca.  Help us spread the word.

- Janet

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.