In Jacmel, Haiti, a program to prevent violence against women and HIV is generating change not only in the community participants, but in the facilitators as well.

“Let me use myself as an example,” says Marie Denise Casséus, an organizer with Rethinking Power, when asked about changes she’s seen as a result of the program.

“I’ve experienced two big changes. First, I have the capacity to speak with people and share ideas. And second, I have the ability to truly listen, suspend judgment, and be tolerant of others’ ideas.”

For others, the change involves recognizing power they may not have realized they had. A recent “exercise on male privilege evoked a big reaction from the staff,” explains Petit-Frère Christ-Roy, also an organizer with the program.

Haitian organization Limyè Lavi has adapted Rethinking Power from a violence prevention program first pioneered in Uganda called SASA! It is premised on the idea that when individuals analyze power and its ramifications, and are motivated to end violence, they can shift power imbalances in the community.

About 30 community activists—including a substantial number of men—have been training for over a year to become anti-violence leaders in their communities. When they meet, they discuss power and the reality of violence. They come with a lot of questions, which they examine together; the program facilitators don’t give them the answers.

“This is the difference from other organizations,” says Casséus. “This is what draws people.”

“The program creates exchanges on what to do to discover solutions together. Telling people what to do doesn’t work.”

As their understandings of violence change, community activists begin to see how domination affects children, families, neighbours, the community.

For example, says Casséus, if a husband beats his wife with a stick, he misuses energy in finding the stick and then using it. Afterwards, his wife needs to go to the hospital, which requires time and money. When children live in an environment like this, they can’t perform at school; they experience trauma and delinquency, act out on their peers, and become a larger danger for the community. By analyzing violence together, and sharing their own experiences, community activists “see the impact and the use of resources and ask what to do.”

What the community activists do is engage others in conversations about violence. Each person has a network and role in the community, says Christ-Roy. Or, as Casséus puts it, each has a circle of influence, extending to family, friends, community, and society. Community activists commit to two hours of work per week in their community, and they decide what form it will take. They can organize more formal gatherings, or they can chat with people they would see anyway, at the market, at school, at a friend’s home. (None of their time is paid—“their first motivation is to end violence,” says Casséus.)

They use visual materials provided through the program, such as posters or comics, to initiate conversations. One small comic shows a group of people aboard a tap tap (share taxi) who pass an HIV clinic and notice there are more women than men there. They talk about why that may be—is it because women have so many sexual partners? Or is it because women have less power, for example, to say no to sex and to use condoms? The comic ends with a man asking if the point is that women should have all the power, to which the other passengers respond that power needs to be shared.

Idealistic as the comic sounds, it’s not too far from what is actually happening as a result of Rethinking Power. Some women have been able to express for the first time the impact of their husbands’ behaviour on them. By listening to female participants speak about their experiences, some men have received information they couldn’t hear directly from their partners. And some participants have even seen reduced psychological and physical violence in their marriages.

“I’m seeing things I hadn’t seen,” says Christ-Roy. “I want everyone to rethink things too.”

- Erin

This is Part 2 of a series. You can find the first part here:
http://pwn.bc.ca/2012/04/sasa/

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
            Anthem
            Leonard Cohen

The other week was the 18th anniversary of my HIV diagnosis and I had made it through most of the day without even realizing. I was walking with a friend when it struck me and I declared the milestone out loud. She looked at me, smiled, and said, “It’s worked out alright for you.” Initially I was taken aback. What an unkind sentiment. I’m HIV+!! How does that work out alright?!?  

I was shocked and scandalized and all those other highly dramatic responses. The drama lasted about a nanosecond until I realized I agreed with her: it has worked out alright. It truly has and it’s this perspective that I tend to live out; sometimes I despair, but usually I’m very even keel with this virus. We had a good laugh making light of what can easily be a depressive topic. My friend is one of the reasons I tend towards optimism.

The anniversary of my diagnosis falls one month before my birthday and for more than a decade I used to celebrate the diagnosis rather than my birthday. Well, maybe “celebrate” is the wrong word – a more appropriate term would be I used to mark the date with a gathering of friends. Recognizing the day served many purposes, but mostly it was an opportunity for me to count my growing blessings.

Please understand I’m no Pollyanna; I can rage against it all with the best of you. Yet I also have an uncanny ability to find a blessing in the shittiest of experiences. I prefer to embrace the full spectrum of life and with this motivation in my heart I have surrounded myself with friends who can see the silver lining without ignoring the gathering storms. It makes for a much more interesting life to try to see all aspects.

How has it worked out alright? Well, I’ve got a great home, my income meets my needs, I work in a community that I love, I have a fulfilling spiritual discipline and I have a treasure trove of dear friends. Most importantly, I have my health, which is strong.

I live in a subsidized unit at a housing co-op. In the mid-80s the co-op designated my suite for a person living with HIV/AIDS. It’s a 2 bedroom unit, but charged as a 1 bedroom. The second bedroom is for a live-in care provider. How forward thinking was that in the mid-80s? It’s been a relief for me to have someone stay here and help me through the rough patches when they happen without it being an economic burden.

Oh money. It’s the source of a lot of anguish, isn’t it? I went onto disability benefits a few years ago and what an adjustment that was! Before I could collect a cent I needed to exhaust my savings. Ugh. So there was the financial readjustment aspect of going onto social assistance and then there was the psychological reconciliation of being dependent on a bureaucracy for my income. Double ugh. But even this has worked out alright for me because my housing is affordable, I have the free time I need to take care of myself and I have an engaging part-time job. For sure I live in poverty, but that is only an economic designation because truth be told I actually live in abundance.

My true riches lay with those I love and I have many dear hearts. My friends are my saving grace and I don’t take them for granted.

Over all, it has worked out alright for me. However, I in no way seek to diminish the very real and intense struggles inherent in living with a life-threatening chronic illness. Yet with that said, I do choose to not focus solely on the struggles but to also recognize the potential for growth. Coming to terms with illness can be a tremendously rich experience. It breaks some people and it makes others stronger. Thankfully I’ve found myself in the latter group. It’s not easy and I can’t say I’m not broken because I am broken. I’m full of cracks. But it’s also worked out alright.

- Monique

*Sigh.*

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

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

You know, I’ve heard that before.

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

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

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

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

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

- Janet

Here are a couple things I know:

1. Awareness campaigns about violence against women won’t end violence against women.
2. Awareness campaigns about HIV won’t end HIV.

For those who prefer succinctness, I can boil these two points down to one: Awareness campaigns have a very limited impact.

What is needed then to not only respond to violence and HIV, but to prevent their occurrence? I think, off the top of my head, that the answer is more comprehensive, long-term projects to stimulate broad cultural change beginning at the grassroots level.

So it was with much interest on a recent trip to Haiti that I met Sara Siebert, who has been involved in anti-violence work for over a decade, and learned of an innovative program to prevent violence against women and HIV. The program, called SASA!, was developed by an organization in Uganda called Raising Voices. It has had such unique success that Sara is now working to support the program’s implementation in a Haitian context.

SASA is a Kiswahili word meaning now. It also serves as an acronym for the four phases of the program: Start, Awareness, Support, and Action.

Here’s a description of the program from Raising Voices:

SASA! is a new methodology for addressing the link between violence against women and HIV/AIDS…. [I]t is meant to inspire, enable and structure effective community mobilization to prevent violence against women and HIV/AIDS.

SASA! is an exploration of power—what it is, who has it, how it is used, how it is abused and how power dynamics between women and men can change for the better.

SASA! demonstrates how understanding power and its effects can help us prevent
violence against women and HIV/AIDS.

…By changing the imbalance of power between women and men, we can prevent violence against women and its connection to HIV/AIDS.

Through SASA!, community activists who want to address violence receive training to initiate discussions about and ultimately change social norms in their communities.

Here are a few key characteristics I immediately like about the program:

• It’s long term, increasing its potential to build change that really takes hold.
• It focuses on power, which is at the heart of violence, and it uses the concept of power to explore inequality in gender relations.
• It looks at change within a community, not just within individuals.
• It involves people from the community, both women and men, and it doesn’t dictate to them what is right or wrong. Participants are encouraged to engage in discussions and come to answers themselves.
• Its creators want others to re-create and adapt the program, and to that end freely share materials.

I had an opportunity to see the program in action in Jacmel, Haiti, and to speak with participants and staff. I’ll talk more about that in the coming weeks!

- Erin

“When my arms wrap you round I press My heart upon the loveliness That has long faded from the world.” Yeats

What’s the best thing about spring? The delicate flowers? The fresh mornings? The growing daylight? Yes, yes, and yes. I would also add one more: falling in love. Ah. Isn’t this just the best time of year for new beginnings? It’s true; your intrepid blogger has indeed met her match and is infinitely surprised. I am surprised in so many different ways. 

I’m surprised that I feel so comfortable and confident. I’m surprised that in the grand scheme of adventures this one has a relative ease despite its exponential excitation. I’m surprised that my feelings are reciprocated. And I’m also not surprised in the very least because at the core of me is a deep abiding faith and I have spent years preparing for this inevitable relationship.

It’s been 18 years since I’ve been with a man. Take a moment to look back over your last 18 years and recognize how much you have changed. My life is not so different. I was in my mid-20s when I was diagnosed with HIV and embraced celibacy. I am a completely different person than I was then and I would be a different person even without this virus. We all change and grow. Our motivations alter; our dreams die and are reborn anew. I was very wounded 18 years ago; I was unable to maintain most of my relationships.

So, here I am in a fresh romance. I am completely surprised that I feel so comfortable and confident. I feel safe and this is the primary reason for my comfort and confidence. I have been concerned that I would make the same mistakes and that I would revert to old destructive behaviours. But I have changed. I have grown. I have learned new behaviours. I have stronger communication skills.

It could be the years of therapy. It could be the unrestricted hours on my yoga mat. It could be the blessed assurance I have found upon entering my 40s. I can’t say for sure; all I know is this is far different than anything experienced thus far. If you’ve ever fallen in love then you know this sensation of newness. In sitting with these new sensations I realize it’s because I’m not ashamed anymore.

Moving Beyond

My HIV diagnosis was a source of great shame for me because in my mind (and heart) it confirmed all the harsh judgments I had heaped upon myself. The virus also confirmed the judgments slapped upon me by other unnamed and unkind people. It has been my biggest life challenge to release this shame. It’s been a complex and painful exercise, but one I would encourage anyone to move through. Shame is insidiously destructive.

In looking back I can see points of releasing shame, I have visualized the process as barnacles falling off or being scraped off the hull of a boat. I remember learning that barnacles need to be removed because they reduce a boat’s integrity, but even upon removal the corrosive nature of their attachment can have lingering destructive effects upon a vessel. I think in metaphors and I latched onto to this one because I find it succinctly illustrates the psychological scars we accumulate as we navigate through the waters of life. I had to release my scars. No one else can heal our pain. Someone can certainly soothe it with their empathy, but ultimately we are all responsible for our own being. I had to do the hard work of finding my own integrity. The release of all vestiges of shame allows me to sail into this new relationship.

I am, however, not completely enchanted – I know my skill set has yet to be tested. I know we will have our challenges in getting to know one another and figuring out how we best function together. I know I’m in the very, very fresh and exciting stage of romance when everything is adorable. I know my brain is bathed in feel-good biochemicals. I know! Oh, I know. But I also know that I see the potential of a great adventure between the two of us and there’s nothing I like more than learning something new and experiencing life with an open heart. Allons-y!

- Monique

photo: iStock

When we held our first health promotion conference we called it SpringBoard because that was the goal- to launch conversations about women’s HIV health so we might inspire change. Eight years later, we’re still talking – with HIV service providers, positive women, students in health care and sciences, and a wonderful group of people in HIV, mental health, addictions, and anti-poverty work. 

Every year we explore different themes- last year it was Aging Gracefully. A couple of years ago it was looking at Confines of Health.  This year’s theme is Living Out Loud, and like the others, it’s open to interpretation. Presenters will all have an interesting take on it-

• Dr Myles Blank will address mental health and HIV. He works with women at Oak Tree Clinic and SheWay.
• Micheal Vonn of the BC Civil Liberties Association will present the latest on court cases about HIV disclosure, including the facts from the pending Supreme Court decision.
• Glen Bradford of Positive Living BC will present on the theme as it plays out for peer support staff in the Patient Navigation program.
• Melanie Kuxdorf of CIHR Canadian HIV Trials Network will be looking at it as it relates to using social media to do community research.

A wide range of interpretations, yes. And once again, the hope is that we will spark inspiration for strengthening the many communities women with HIV inhabit.

Join us May 3, from 1030-230. Registration is free but you must register in advance. We look forward to seeing you!

- Janet

You know the banter that goes back and forth- “What shall I call you?” “Call me anything you want, just don’t call me later to dinner.”

Instead I’m calling you early. 

Friday night may be your “treat night” to go out for dinner or get take out, but why not make it Thursday this week? If your pick your restaurant right, your dining dollars will go to help people living with HIV. 

Dining Out for Life is a North American event that takes place in many cities. Restaurants donate a percentage of their receipts for breakfast, lunch and/ or dinner to AIDS charities. Lower Mainland and Whistler restaurants will direct funds to Friends for Life and A Loving Spoonful. On Vancouver Island, funds will go to AIDS Vancouver Island. And in a few weeks time, on April 26, it will go to the ASK Wellness Centre in Kamloops.

Please help our friends-

Friends for Life is a gem in Vancouver’s West end. Friends for Life provides complementary and alternative health support to people living with HIV and other life-threatening health conditions. They offer a variety of options, from body work to counselling.  If you’re a bingo fan, get your fill weekly and help the organization.

A Loving Spoonful works from this awesome vision: “No one living with AIDS should live with hunger.” They deliver on that through a variety of food programs that include meals and supplements for individuals and families.

AIDS Vancouver Island  offers support and education services in many communities, from Victoria and up the Island to Port Hardy- quite a feat! Faced with complex issues of the many communities they serve, AIDS Vancouver Island has been providing services since 1986.

Folks around Kamloops please don’t forget to mark April 26 on your calendars to benefit ASK Wellness Centre, which offers harm reduction and health management education, as well as crisis funding.

Eat up! (Personally, I’m having breakfast at Joe’s Grill for a start. Best home fries ever.) And hey- sure this post will be stale (!) fast. But you can always give to these organizations at any time, which will be very appreciated.

- Janet 

photo: Morguefile

Heart from morguefile.com

Just a few weeks ago I wrote about my thoughts around disclosing my HIV status. At the time of writing that post I had never had to disclose in intimate relationships because I’ve been single and celibate for 18 years. However, in my general everyday life and interactions with people I am right out there with my status. I speak in the media, I’m the HIV+ director for the Pacific Region on the board of the Canadian AIDS Society, I blog here—I obviously have no qualms when it comes to sharing my experience of living with HIV. I am fearless in the public arena, but when I sit down with the intention of disclosing to someone I care about, I lose all composure.

Most recently I did disclose to someone I care about and it was just as terrifying as I thought it would be, but I survived and our friendship is intact.

It was only our second date, but I felt I needed to tell him up front. I’ve struggled with when to disclose. Do I tell right away or let affections grow and then share the knowledge? I’ve decided I prefer to not build up emotions. I prefer to be up front from the beginning. I’m sure I feel this way because the person who infected me did not tell me, at any point, of his positive status. I’m very conscious of being transparent with people.

In the days leading up to our date and my inevitable disclosure, I was both nervous and excited. I was nervous because, well, do I really need to tell you why? And excited because I was confident that the man I was going to share my truth with would honour it and not judge. Guess what? I did choose wisely. He was calm and compassionate. He was also a little funny at just the right moment. Thank goodness for humour!

We had just finished having a discussion about how frustrating we find people who don’t say what they need to say. Hmmm, perfect opportunity to say what I needed to say. I took a deep breath and told him I needed to tell him something. There was something about me that he needed to know. Then I got really weird. My breathing got fast and shallow, my voice changed pitch and got louder, my eyes filled with tears, and I clutched a pillow to my chest. My emotions were highly charged in that moment.

I just blurted out, “I’ve been celibate for 18 years and I’m HIV positive.” I started babbling, so I stopped myself and allowed space for what I had just said to sit there between us.

His first question was, “How has it affected your health?” Wow. I had chosen wisely. Here was an empathetic person. Thank you. He proceeded to ask me more caring questions, none of which were judgemental. I truly felt safe. Initially it was terrifying and I’m quite sure my apparent anxiety freaked him out somewhat, but the whole experience quickly became yet one more honest conversation with a new friend.

My first disclosure experience could have gone completely differently. But it didn’t. My first disclosure experience has strengthened me and I trust it will only become easier. I’m not particularly eager to disclose again in a dating context, but I will. I’m glad I told him right up front. I’m not entertaining thoughts about what could have happened if I had waited to disclose because what went down between the two of us that day was amazing. Some new synaptic connections have been established; there are few new grooves on my brain.

Have you ever done something that was so completely terrifying that it altered you at a cellular level? I’ve always been a courageous person and the first time I noticed the refining power of moving through fear was when I was 8 years old and I slept out in my tree fort overnight. By myself. In the dark. Just me. Out in a field. Far from home. Did I mention I was all alone? The next morning I was so jazzed by what I had accomplished, and that experience established a pattern of facing my fears in my receptive psyche. I’ve not looked back and I don’t regret being a courageous person.

I understand courage as being open and receptive to life, and engaging with my whole being despite any perceived or real dangers. Being courageous does not include checking out of life. I like the “heart” in the word courage. At the root of courage is coeur, French for heart. I believe we must have an open and receptive heart to be courageous. It can be a vulnerable place to be, but it can also be the sweetest, most transcendent place. I choose to live from my heart. Always.

- Monique

Condoms. Photo from iStock.

News that made me smile this week: an 81-year-old woman who educates seniors about sexual health is getting recognized.

According to the Sun Sentinel, Kate GeMeiner of Florida decided to engage with older populations about sex after learning there was a high incidence of HIV in seniors in the area.

She’s earned the nickname “The Condom Lady” for handing out condoms to seniors. Having had to strategically engage with older adults to get condoms into their hands, I appreciate her creativity in getting reticent seniors to take condoms home.

“I tell them when they write a letter or send a check to their grandkids in college, I tell them to send them a condom,” she said. “That’s how I get them to take the condoms.”

After all, she says, “Seniors who are retired, they have time to have sex.”

How great is that?

It’s especially heart-warming news given the rise in sexually transmitted infections among older populations in Canada and the US. Many seniors are having sex, and many are dating around, but they aren’t necessarily practising safer sex and they may not realize the risks.

It’s a potent reminder that people don’t outgrow the need for sexual health education. And they’re never too old to become the sexual health educators themselves.

- Erin

Super happy- I spent Wednesday at Health Care 2.0 Social Media Camp, an event presented by the BC Patient Safety & Quality Council. It was lovely to see people I’d met previously through the Healthcare and Social Media Canada community (#hcmsca on Twitter) and to meet new faces who are as keen as I am to share the word about the potential of social media tools to engage, build and support health communities.

Social media tools are used by many community groups to enhance their relationships with individuals and organizations. We’re active on Twitter and Facebook, and to a lesser extent, YouTube (there are only so many hours in a day). Social media tools can help reach organizations and individuals who don’t live in the Lower Mainland- wherever there’s Internet, there’s a voice.*  We share program information that helps women get connected with us and ease their isolation. We also share resources and research findings so women with HIV and the folks supporting them can get up to date information for the best care no matter where they are. 

The exciting element of social media is the “social.” It’s participatory, and everyone can have a voice through sharing, discussing, and reflecting on what’s posted. This can result in strengthening communities and visioning change where it’s needed. Ongoing throughout is the opportunity for conversations.

Those of us using Twitter in the HIV community in Canada connect through community hashtags- #HIVCan, #HIV, #AIDS, #AIDSlaw etc. (Here’s a list of the tags often used). We can get program and event information to each other immediately; and share info about local and international action. New findings about HIV, prevention and treatment news is shared far and wide. A lot of activism is also carried out online via petitions that go around the world.

Social Media Tools Perfect for HIV Connections

One of the fantastic things happening through social media tools is the opportunities for patient empowerment, peer to peer connection, and patient to healthcare provider communication- sound familiar?  This is what HIV activism has always been about, and social media streams a great way to carry it on. Now it’s crossing over into other health issues as well. Community development, patient empowerment and making change in how doctors and patients work together is a growing wave that is supported by the energy flowing through social media channels. 

For those of us in the wide reaches of Canada working with little money for meeting in person, social media tools are also a great way to get to know people. As Kat Dodds from Hello Cool World said “Social media is all about collaboration; connecting with the people you want to work with.”  The HIV community is rich with accomplishments and ripe with possibility.

Like any research you read, always consider your sources- there’s incorrect information out there.  Look for established AIDS support and research organizations, medical researchers, or places like the CIHR Canadian HIV Trials Network or BC Centre for Excellence in HIV/AIDS. You can start by looking at the lists we have on our Twitter feed. And if you haven’t already, think about joining conversations on Twitter about healthcare and social media. Here in Canada, use #hcsmca to find out more about it. If you’d rather look for HIV info, #HIV will get you lots of stuff. There’s a ton to discover.

- Janet

*Communities without reliable internet access are harder to reach, obviously. I hope this will change as systems are upgraded.