Earlier this week on my You Should Know Twitter feed, someone sent me a link reporting the results of a court case in the US-  a wrestler who knew his positive HIV status but didn’t disclose it to multiple sex partners that followed, putting them at risk for HIV infection. His defense was that he was a sex addict and couldn’t help himself.  Oh boy.

The question of sex addiction aside, let’s talk about the man’s failure to disclose his HIV status. This is a much debated topic in many fields these days- the law (obviously), public health, human rights, HIV prevention and education, health care, you name it. The Canadian HIV/AIDS Legal Network has some great information on the issues, and I’d urge readers to check it out. In particular, I’d urge you to look at their recent brief on an upcoming Supreme Court case.  Two important cases will be tried. 

Here at Positive Women’s Network the question of HIV and criminalization often comes up. We work with women who are infected with HIV, many of whom had no idea their sex partner had HIV. We’ve supported women going through legal proceedings where they are giving evidence against former partners that infected them. We’ve also supported women who themselves have been accused of non-disclosure. Our goal of supporting all women with HIV demands that we look at the issue of criminalization. We’ve been asked to develop policy that could be used by other organizations, as we’re one of only two organizations in Canada that focuses on women and HIV exclusively.

We’ve witnessed the pain and suffering for women on both sides of the criminalization fence.  To provide the most comprehensive support we can, here’s what we’ve come to about the issue at present.

There is no evidence that criminal law is effective at preventing HIV transmission.  People’s sexual decisions are dynamic, intimate and often spontaneous. Criminal laws and convictions haven’t changed that. For women in situations of abuse, coercion or assault, decisions can be about reducing harm, not enhancing it. (One of the cases to be heard February 8 involves a woman and her abusive former partner).

Criminalization may actually drive people away from public health initiatives like testing, counselling, and support. In this US case, the man knew he had HIV, but admits that he didn’t talk about it as he didn’t want his family to know. Why? Probably because HIV is still a highly stigmatized, misunderstood disease.  People with HIV often experience discrimination- even in this day and age when prevention, treatment and education are available.Criminalization can add to this, not diminish it. 

Criminalization gives people a false sense of security.  The idea that “he (or she) would tell me if they had HIV because the law says so” is obviously not the case.

We feel that a public policy response and public health laws are preferable to criminal law. How do we support people with HIV, and all people, to have comprehensive sex education and unbiased HIV prevention information?  How do we support people to gain the power to act on their knowledge and look after their sexual health? How do we address gender and relationship inequality to make this possible?

These are big issues and big challenges.

Their resolution isn’t likely found in a courtroom.

-  Janet

  Photo: IStock

This is the final blog in our series: PWN at 20 which honours our twentieth anniversary providing support, education, community resources and networking for women with HIV and health care and social services communities.

It’s World AIDS Day, an internationally recognized time to remember the past and rally for the future. This year there are multiple themes, a reflection of the diverse issues presented by HIV. The UK National AIDS Trust says “Act Aware.” UNAIDS has set sights on “Getting to Zero.” Here at home, the Canadian AIDS Society urges Canadians to “Do Something.” There is still so much to be done.

Twenty years ago some visionary women set out to support women with HIV in the Vancouver area. They were women with HIV and women from various backgrounds- nursing, social work, and education. They knew something needed to be done for women specifically, and their first meeting in the common room of a housing co-op led to the nationally recognized organization we are today. One of the big themes talked about back then was the stigma that women face, especially as members of intricate family units that centre around them.

Stigma still exists everywhere for women with HIV. A Canadian study of women revealed that stigma figures highly in their day to day lives, as does sexism and racism.  Women the world over report this. There is stigma in having HIV, and stigma in “bringing it into the family” whether this was the actual case or not. Women who discover their HIV status during pregnancy often bear the brunt of blame, as they receive the diagnosis their husbands haven’t sought.  

But women challenge stigma, and challenge the destruction that HIV brings. The Grandmothers to Grandmothers  movement is a great example. Many grandmothers in African countries have to step back into parenting their orphaned grandchildren when adult children die of AIDS. Grandmothers here in Canada work to raise awareness of the need for this work and funds to support it through the Stephen Lewis Foundation. (Yes, that IS a plug to donate!)

Peer support is also an essential part of confronting HIV as it weaves through medical, political, socioeconomic, geographical, and intimately personal pieces of life. (True, that sentence is a challenge. – but so is living with HIV). Members at Positive Women’s Network say “PWN is a confidential and safe space created for women…it feels like a family, feels like going home.”

As another member puts it, “Women heal women.”

But women can’t do this work alone. Women and men need to work together to change the shape of what it’s like to live with HIV. Many courageous and strong people do just that. Here in BC, PWN is lucky to work alongside many organizations that recognize the unique need for women’s services and complement them with their own. We’re also grateful to groups and individuals we work with across the country.

As the PWN community contemplates the beginning our twenty-first year in “Challenging HIV. Changing Women’s Lives” we ask everyone to “Do something” on World AIDS Day. Learn about HIV; talk safer sex with those you care about, young and old. Share the humility that this could happen to any one of us – risk factors for HIV transmission are based on human vulnerabilities. Make sure you and your loved ones know how to prevent HIV and where to go for support should it be needed. Don’t deny- do something.

- Janet 

Another edit of this post is on You Should Know

photo: Kevin Rosseel/ Morguefile

The first World AIDS Day was December 1, 1989 with the theme Our Lives, Our World – Let’s Take Care of Each Other. This shared responsibility theme has been recreated over many years on December 1, with a focus on different members of the world community. World AIDS Day is an opportunity to recognize the many ways in which AIDS challenges the world- medically, socially, emotionally and politically.

I’ve come across three different World AIDS Day messages so far. UK National AIDS Trust says Act Aware, UNAIDS is Getting to Zero and here in Canada, the Canadian AIDS Society urges us to Do Something. Over the next few weeks, we’ll be blogging on the different themes.

Act Aware

UK National AIDS Trust breaks down their awareness theme into personal, social and community building approaches:

• Personal:  Learn about HIV transmission and look after yourself and your sex partners
• Social: Educate yourself and others about HIV and raise funds for HIV services
• Community Building:  Share AIDS Day events you’re having or attending. what events you’re holding or being part of on the day itself

I admire their succinct goals, because awareness spans so many possibilities and prejudices. Under the umbrella of awareness, HIV activists have to combat homophobia, transphobia and many of the “isms”- sexism, racism, and classism among them. Awareness is not only a nation (or world) wide conversation; it’s a personal one with individuals-  from sex partners to politicians who’d rather ignore it. 

A Vancouver awareness campaign is the recently launched It’s Different Now. A tagline of the campaign says “We don’t think you’re special” and explains why routine HIV testing is a great idea for everyone who is sexual – putting them at risk for STIs including HIV. Offering tests to everyone rather than those in “at-risk” groups emphasizes the message that HIV is different than it used to be.

Aware is being in the present – in the bedroom or bar, in the emergency department, at the doctor’s. This World AIDS Day and every day, what’s your version of HIV awareness? 

- Janet

Photos: HIV/AIDS blocks: jscreationzs/ freedigitalphtos.net

Circle of friends: savit keawtavee / freedigitalphtos.net

I’ll warn you now; this isn’t a topic that many people want to embrace: end of life planning. I was made well aware of that recently in a meeting when folks admitted their own discomfort with it, but jumped into discussion all the same. One of the folks involved shared a blog from Seattle Mama Doc, who dreads leaving her children when she dies, and knows the best thing is to “plan” her death. But even the good doctor hasn’t done it. 

Whatever health is at the moment- HIV or otherwise- we’re all going to reach the end of our lives at some point. None of us knows exactly when that transition will arrive, but when it does, don’t you want it to happen under your own terms?

I’m not talking assisted suicide- that’s a whole topic in itself. I’m thinking more generally about end of life planning. Do your friends and family know what you want? Do they know what kind of medical care you want to receive? Or what your health care team should do if you can’t communicate? Would you like to be on life support? Would you like to be resuscitated?

Unfortunately, life circumstances can override plans- a violent death, an accident. Too many women, particularly the marginalized, meet end of life this way. I know it’s a possibility, but still feel that thinking about end of life decisions can actually be empowering. So we consider our lives with dignity and grace. We all deserve it.

End of life planning can provide this information to your friends, family and health care professionals so they may care for you as you would like. So you have options even when you can’t speak for yourself. Senator Sharon Carstairs has been quoted as saying Canada is a “death denying society.”

It used to be with HIV, people felt pressured to think about the end immediately. Thank goodness that’s changed for many, but it doesn’t remove the fact that it’s still important to think about what will happen to your belongings, to your children if you’re a parent, to your healthcare if you’re dealing with decisions to be made.

No matter what your health is, it’s something we all should think about. Here are five questions to think about from the Engage with Grace Project. It was inspired by a 32 year old mom who had no idea she would die so young. 

Here in British Columbia, Representation Agreements* can cover a variety of issues you might need support with if your health is in question and you can’t speak for yourself.

- Janet

*Please note that if you had a Representation Agreement in place before September 1, 2011 when legislation changed, you may need to make some changes to it.) 

photo: Morguefile

(In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we invited folks to Help Us Celebrate Resilience, our twentieth anniversary fundraiser coming up on October 16)

Challenging HIV.  Changing Women’s Lives.

These words guide us in our work. Since January we’ve been looking back at that work over the past twenty years. It’s been an amazing journey that we’ll celebrate together on October 16 at Resilience.

Pessimists might ask “What’s to celebrate about HIV?”

Well, the amazing community that has grown, for one. Evelyn, one of the founding members, said something one day many years ago that has always stuck with me:

“I don’t have acquaintances, I only have friends,” she said in her quiet voice.

She knew that some relationships would be more intimate than others, but she felt holding people at arm’s length did her no good. This was especially true as she faced the unknown of how HIV would unfold in her life. To her, everyone she met had a gift to share. In that way, everyone was a friend.

Most of the women who come to Positive Women’s Network don’t remember Evelyn, who died before the treatment changes of 1996. But it’s almost as if her words became part of the spirit of PWN, because friendships bloom all the time:

“Women at PWN have different experiences from mine, but we are all alike in so many ways— it’s always that one place we connect,” said one member.

Sangam, one of the Support workers, says “Watching a woman come to a retreat for the first time- often there’s a lot of fear. But women get to be with other positive women and so many of the myths that they’ve been living with themselves get dissipated in that weekend.”

Reflecting on what retreats offer, one woman said, “We can enjoy life instead of looking at HIV like a death sentence.

And there’s the resilience part. Women face incredible adversity, and not only the challenges of HIV. Many women are also up against violence, poverty, abuse, mental health and addictions. But women survive. They meet at PWN, give each other support and their perspectives change:

Summing up her experiences here, another woman said “I have hope for my life – I had no hope for my life before.”

So yes, community is something to celebrate. Resilience. Friends gather- here.

- Janet

It’s been a rocky case, and it’s reached a new triumphant plateau for those of us working in health care. The Supreme Court of Canada has ruled that InSite, Vancouver’s controversial safe injection site, can continue to offer health services. The Federal Government’s appeal to the BC Supreme Court decision of 2008 that supported InSite has been defeated.     

InSite opened in 2003 under a special exemption to the Controlled Drugs and Substances Act, as InSite is partly a research facility, looking at the impact of safe injection on a number of factors in public health. The exemption was renewed several times, but in 2008, but the Federal Government balked at another and InSite was slated for closure June 30, 2008. BC Supreme Court Justice Ian Pitfield ruled in May of 2008 that InSite provides health services to addicts, and denying them services would contravene the Charter of Rights and Freedoms. The Federal Government decided to challenge that ruling. PHS Community Services Society, which operates InSite in conjunction with Vancouver Coastal Health, says that the closure would infringe on the rights cited in the Canadian Charter of Rights and Freedoms.

Which leads us to the decision today.

Health care for injecting drug users isn’t the most popular notion for the more conservative minded. Naysayers have said it won’t help people stop using drugs, that it will lead to increases in drug use and increases in crime.  Studies show the opposite.

InSite supports people to access a range of health options needed in the struggle with drug addiction. Abstinence is one option, but not the only one. More supportive options lead to better health outcomes. While one person may deal with their addiction by trying to go “cold turkey” another may not be able to, and a more comprehensive approach will have better and more long-lasting results.

InSite staff includes nurses, counsellors and peer support counsellors. InSite doesn’t supply people with drugs, but staff does help them learn how to use them more safely. Nurses teach about how to avoid getting injection associated illness and infections. They are also immediately on hand when and if an overdose occurs, although overdoses have decreased by a third since InSite opened. When a client expresses interest in going to detox programs, support and referrals are made. There’s also counselling, referrals to housing and social support services. Veteran injectors say it’s saved their lives. But the abstinence only mind of many politicians hasn’t allowed for the spectrum of what recovery and change can look like.

Those against InSite see it as a place of criminality. I see it as a place of health care. Thank goodness the Supreme Court has decided on that vision too. For more of today’s updates on this landmark ruling, follow hashtag #InSite on Twitter. 

- Janet 

I read a beautiful piece earlier this week from a doctor who cared for a 90 year old gay man in a nursing home. He wrote about the isolation that elderly lesbian gay, bisexual, trans and queer (LGBTQ) people can face. Treating this gentleman who ultimately died alone caused the doctor to reflect on his own gay privilege. 

Coming of age in a time where gay visibility was more accepted, the doctor not only found a partner, he could be out about it, and expand his family to include children. Privilege indeed. And love. And community. Not something that all LGBTQ people have had, or can have.

The waves of homophobia that cause many people to hide or deny who they are haven’t receded completely. People in small towns and large cities still utter homophobic  threats. People still get beaten up or killed for their sexuality.

Things have gotten better in some parts of the world. In a few places, same sex marriage is a legal option. I’m happy to say that here in Canada, that’s the case, even though we’ve had our ups and downs about it. Not everyone was on the same page about it, shall we say. For those who want to have children, things have also improved both socially and clinically. For incidences of hate crimes, well… that’s still a problem the world over.

Those of us working in HIV prevention and support see the effects of homophobia all the time. The idea that gay men= AIDS is still out there. Oh we know that far more people than gay men are infected, and being queer doesn’t equal HIV infection. But many in the general public still see HIV/AIDS as just affecting gay men. It couldn’t affect a “nice” family.  But it can affect anyone. 

One of the gifts of my work at Positive Women’s Network is the community. We create a safe place here for our members, and we are part of a community that is constantly working to confront homophobia, AIDS phobia. I hope it contributes to less isolation and more connection. For everyone. 

- Janet 

Twenty years. Thousands of stories. Hundreds of laughs and certainly some tears. Bold voices. Caring support. Lifelong connections. Fantastic community.  This is what we’re going to celebrate on October 16.   

Resilience is a party, a fundraiser, and 360 degree look at Positive Women’s Network. At twenty we take the cake as the oldest HIV support organization for women in Canada and our work is constantly developing.  We started out as a handful of women (with HIV and concerned about it) who knew HIV would serve up some difference between men and women. They knew women would need their own place. Our first members were a few Vancouver women. Now we’ve grown into an organization that provides support to women across BC and health promotion resources to service providers nationally. Who knew we’d still be at it twenty years later?

Join us October 16 as we celebrate the road behind us and the paths to unfold. We’ll have live music, hors d’oeuvres, and a silent auction with tantalizing possibilities. Catch up with friends and allies in the community. Meet new people who are passionate about challenging HIV and changing women’s lives. If you can’t attend yourself, consider donating a ticket- alone or with a couple of friends.

All proceeds go to programs that provide support to women living with HIV. Medically, socially HIV remains a challenge. Our work isn’t done. Help us make it count.

I look forward to seeing you!

- Janet

  BUY TICKETS NOW

In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we looked at HIV in Aboriginal Communities.

There is power in partnerships. Our organization was a partnership from the start: HIV+ women and uninfected allies working together. We’ve benefitted greatly from the various viewpoints that partnerships offer. Learning from people, organizations and even landscapes has helped us improve services and resources for HIV+ women.

Partnerships connect people. Here’s a few of our wonderful partner projects over the years.

Oak Tree Clinic

Oak Tree Clinic, which is the province’s HIV care centre focussed on women and children, launched at BC Women’s Hospital in 1994. The idea behind a women-specific health centre was to include a place for women’s HIV care and a place where children were welcome and able to access treatment too. The planning committee was made up of doctors, social workers, and members of Positive Women’s Network, including the Executive Director, Marcie Summers.

The vision back in the 90’s continues in service delivery today, with comprehensive care for women that is provided by a multidisciplinary team of doctors, nurses, a pharmacist, dietician and social worker. Kids can come along to the play space, and if they’re infected themselves, they get care as well.

We also partner with Oak Tree in providing outreach, an important bridge for lots of women. Getting to medical appointments can be difficult, whether it’s because of travelling a long distance or because HIV itself has many challenges to body and spirit. Oak Tree’s Outreach Workers connect with women 1-1 and take them to their appointments to ease these challenges. One of the Outreach workers is part of the PWN staff team, an idea that was launched early on in the life of the Clinic. Having an Oak Tree staff person as a part of the PWN team means that information about services, programs and resources travels both ways between Oak Tree and PWN. Better awareness of options provides better support.

Physician Education Project

HIV is different for women than it is for men, a truth that still plays out today, but this was even more evident back in the 90’s when PWN started. The Physician Education Project took place at Grand Rounds sessions in hospitals. Doctors could provide the influence to get into the hospitals, and the team of doctor and positive woman would teach about medical and psychosocial realities of HIV+ women’s lives. This national demonstration project was offered around the Lower Mainland in 1995-1996 and presented at the XII International Conference on AIDS in Vancouver in 1996.

But our membership isn’t limited to the Lower Mainland. We approached several smaller communities in BC about the idea of taking physician education one step further. We didn’t want to just jump in with our experiences. We wanted to know what was happening for positive women locally in their communities, and how we could work together to improve things. The Healthcare Provider’s Education Project was a partnership of Positive Women’s Network, AIDS Prince George (now reshaped and renamed Positive Living North), ANKORS and AIDS Vancouver Island. We worked in each community to discover the issues. We expanded the project to include health care and social service providers beyond primary care or HIV doctors, because we were hearing that HIV phobia and stigma were also problematic outside the medical examining room. We trained local educators so they could make connections in the community that would benefit services and support beyond the end of the project.

Listen UP! Peers get WISE

Listen Up! was a multi-year project of peer driven research and peer-driven education. Positive women interviewed others about the risks that they felt had made them vulnerable to HIV and what resources might have helped them avoid it. Using the information gathered from the peer-research, PWN partnered with communities across BC to talk about the determinants of health and HIV risk for women. Small towns like Chetwynd, Williams Lake and Prince George and communities on Vancouver Island played host to the education team to present data and directions communities could take to support women.

A great project unfolded with YouthCO, Canada’s first youth-driven and youth-run HIV organization. We started together because young women were increasingly at HIV risk and underserved, which led to the Bases Covered awareness project. That evolved into two phases of Women’s Initiatives for Support and Education (WISE.  Peer-to-peer support and education resulted in resource development for young women infected and those who were at risk.

Transition Houses

Violence affects women with HIV significantly. Abusive partners can blame a woman for bringing HIV into the relationship, use it as a means to ensure she will stay in the relationship (“No one will love you now that you have HIV”). They can also control when she can or can’t access health care and support. Enter our partnership with the BC Society of Transition Houses. Many PWN members use transition houses to get out of abusive relationships, but fear they’ll not be welcome can hold them back. We’ve been delivering HIV education to staff at transition houses for years now. HIV transmission information, confidentiality and disclosure, universal precautions and advocacy issues all figure in the sessions.

We value our ongoing partnership with AIDS Vancouver for the Grocery program, and connect regularly with other member groups of the Pacific AIDS Network on committees and short term projects. We’re currently in partnership with Literacy Lives, a project sponsored by Simon Fraser University to increase health literacy of those living with HIV. And we’ve had a fantastic six months working with Tamara Landry, a PhD candidate from Universities Without Walls. Tamara has been interviewing members and community folks in documenting our 20th anniversary.

We believe that partnerships can create awesome possibilities. We’re grateful to the many we’ve worked with over the years, and definitely look forward to more. 

 - Janet 

I was heading towards the corner, hoping to catch the pedestrian light when I saw her. She was walking towards me, and I could see she had a huge black eye. It was not as vivid as it would have been at first, but it hadn’t reached the greenish stage yet. When we passed each other, she looked right at me, and lifted her chin a little.

I’ve seen too many eyes like that in my work here. HIV goes hand in hand with violence. Sometimes a guy will use a woman’s HIV status to toss her around. He blames her for bringing HIV into their relationship, whether his diagnosis came first or not (there’s always a way to twist it, I’ve discovered). Or he tells her that now that she has HIV, she’s worthless, and no one else will love her. She better stick with him.

Violence can lead to HIV too. Sex that’s forced can cause to tearing of vaginal tissue, and that is an opening for HIV and other STIs to get in. Even regular sex can cause tearing. The sexual violence of rape has been used to “control” women in peace and wartime, and still goes on the world over. Many women have been infected with HIV because of violence.

In our work here, we tell women they never deserve it. They have options. We assure them they deserve love and respect, not fists and knives. And we always respect when and how a woman leaves (or doesn’t leave) a violent relationship. Life is complex, relationships complex. There are many reasons to leave a violent relationship. But if you have no home, no money, no means of making any, and the word from your partner that he will hunt you down and kill you, why leave?

When that woman lifted her chin at me as if to say, “Yes, it’s there but I’m surviving,” I thought, right on. Right. On. 

- Janet