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

It’s not surprising working in this community that people will die. Those who’ve passed on are too many, and most of them wouldn’t want their names associated with HIV even in death- disclosure is too much for unknowing family and friends left behind. But acknowledging the means of death is important because it goes beyond HIV.

Health

Advanced HIV disease, as it’s often called now, used to mean AIDS. And AIDS was a miserable ending. Some women lost their minds to dementia. Others got infections they couldn’t rid themselves of, no matter what. Most women figured they would die within a couple of years, and too many were right. An AIDS diagnosis was a progressive step closer to the end.

Then came 1996, and advances in HIV therapy. A combination of treatments could hold HIV at bay, and give the immune system a fighting chance. Researchers and doctors worked on fine tuning the treatments, developing new ones and learning about how to minimize the side effects of the drugs. The progress has been amazing- someone diagnosed with HIV in 2011 could live almost a normal life span. Triumph over HIV is possible to a great extent.

Yet for lots of women, it’s not just a triumph over HIV that’s needed to save lives.  

Home

Numerous PWN members experience violence in their relationships. Sometimes violence has led to their getting HIV, because the women didn’t feel safe enough to “demand” condom use. And sometimes it’s the other way, with HIV leading to the violence. A man controls and physically dominates his partner, saying that “her” HIV is the reason, and she better stick with him. “Who else would have you?” he asks. 

One member used to be thrown down the stairs on a regular basis by her partner. When our office was in another building with multiple HIV support organizations, we used to have to sneak her out the back when he was after her. She and others like her formed part of our decision to move to a more anonymous space where we could control safety more easily. Women are beaten and killed by their partners every day. We do our best to help women cope and leave should they feel able.

Community

Women are also at risk when they’re at their most vulnerable- on the street, doing survival sex work. Alienated, abused, often drug addicted or well on the way, girls and women end up on the street and support themselves through sex work. The attitude that no one seems to care about them, and if a few are beaten up or killed, it won’t be noticed is distressingly played out all the time. Sadly, the Missing Women Enquiry. supports this. 

PWN members are diverse in health, ethnicity, wealth, status. But all are women who live in cultural and societal circles that can devalue women- circles that can undermine their worth and survival.  At PWN we work with women who have HIV as a common ground, but so often there are other commonalities too- violence, discrimination, sexism. And so our community also unites over death. Our memorial corner has a memory book and a candle. People can sign it or read it as they wish.

Or leave it alone, just knowing that someone important will be missed. No woman goes unnoticed. 

- Janet 

Photo: Simon Howden/ FreeDigitalPhotos.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

Recently I was hit with an urge to go to the theatre, and not having paid much attention to it over the years, I had to scour the local listings to see what was out there. What caught my attention was Next to Normal, a rock musical about a woman with bipolar disorder and her family. A musical on mental health? I had to see this.

The show revolves around Diana, a mother and wife who has dealt with bipolar disorder for years, and whose family and doctors try but fail to understand how she feels and what she needs.

In the song “You Don’t Know,” she pointedly tells her husband that even though he says he knows, he doesn’t know:

     Do you wake up in the morning and need help to lift your head?
     Do you read obituaries and feel jealous of the dead?
     It’s like living on a cliffside not knowing when you’ll dive.
     Do you know—do you know what it’s like to die alive?

(You can watch a performance of “You Don’t Know/I Am the One” by the original Broadway cast here.)

In “Who’s Crazy/My Psychopharmacologist and I,” Diana describes to a psychiatrist the string of side effects she’s experiencing as a result of medications. As yet another change is made to her drug regimen, Diana remarks, “Not a very exact science, is it?” And when finally she declares that she can’t feel anything, the doctor responds, “Patient stable.”

Diana’s not the only character to break out in song about how she’s feeling. The spectacle of a family singing about their individual mental health (even if not in dialogue with one another) was one that I greatly enjoyed, as it seemed to break some of the silences. 

Next to Normal raises issues related to psychiatry, pharmaceuticals, interventions, and ethics, as well as the important questions of who is really normal and who knows best how to treat a person with mental health problems. It highlights that an individual needs to make decisions for herself and that care and treatment can’t be dictated by others. At points I thought the show moved dangerously close to suggesting that Diana could be fine if only she decided to be, but it’s a production worth seeing and thinking about.

And by the way, the Canadian production has an interesting link to the HIV field. The lead, Caitriona Murphy, is a licensed music therapist. Here’s what the Vancouver Sun wrote about her:

     Trained at Capilano University, Murphy did her internship at the Dr. Peter Centre.
     Working with people who are dealing with HIV/AIDS, she started to see the
          differences in therapies – and the difference music can make in helping
          people.
     "A lot of people feel extremely isolated with their diagnosis, shunned by society,
          so having a place where everyone’s normal and we can make music together
          is very soothing, very comforting," Murphy says.

- Erin

(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

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 

The Colour of the World

Talking with a friend the other day about how depression colours her sense of the world reminded me of just how much people who have never experienced depression can misunderstand it.

People often think that depression is simply having a bad day, or hitting a rough patch, or feeling sad. They assume that if someone is depressed, it means that person is unable to smile, or laugh, or find any type of levity in life.

But depression isn’t a passing feeling, although it does have an ebb and flow. It’s more like an underlying state of being, a subdued background to one’s life—or, in its more intense periods, it’s like being engulfed by a void or consumed by feelings of bleakness, despair, dread, or misery.

Some women describe depression as a pervasive heaviness. Others explain how it shades their view of the world, so they feel like they’re looking through grey-tinted lenses. Depression can turn life into a struggle, making the seemingly easy routine of daily life a formidable challenge.

Another Shade

Contrasting depression with the romantic and artistic associations of melancholy, Susan Sontag declared that “depression is melancholy minus its charms—the animation, the fits.”

But even if depression hasn’t achieved a reputation as a condition fit for creative types, in practice it has an intimate relation with art. Another friend explained to me that depression infuses her art, that in the throes of depression she produces work with a richness of emotion that she otherwise can’t tap into. Depression, she said, brings her closer to true feeling. I believe it; the best art comes from writers, painters, and musicians who have known intense unhappiness and seem to feel more than those around them.

So while depression is an ongoing struggle, for some it’s also a depth of feeling and a source of creativity.

The Female Side of Depression

For reasons that aren’t clear, depression affects more women than it does men. The same goes for people living with HIV: Rates of depression for positive women are higher than those for positive men. This may be due to physiological differences between women and men, or it may be due to the different social conditions faced by women, who tend to have a lower income, experience violence disproportionately, and act as primary caregiver to their partner, children, and other family members. The International Association for Suicide Prevention notes that structural factors such as “unemployment, poverty, oppression, marginalisation, stigmatisation, or racism” can contribute to depression.

But regardless of whether depression is the result of biological or social conditions, it doesn’t mean that someone is flawed or weak. If you have depression, it doesn’t mean that something is wrong with you. Historically psychiatry has disproportionately based its classifications of disorders on women’s behaviour, with the effect of pathologizing much of what might otherwise be considered normal responses to issues faced by women, such as violence and health. A positive woman may have a prior history of depression, or she may experience depression for the first time after being diagnosed as HIV+, but either way it can be seen as a normal response.

Dealing with the Dark

Depression can be seen as normal. But at the same time, you don’t have to passively accept it when it’s interfering with your life. It’s important to recognize when you need support.

For women living with HIV, depression can negatively impact adherence to treatment. Studies have shown that patients with depression are more likely to miss doses of medication, so figuring out how to deal with both the depression and HIV infection is important.

If you feel that depression is having an adverse effect on your life, you can consider a number of options. Social support is key—identifying family members, friends, or support workers with whom you can connect is important. Exercise and nutrition are also prime considerations, as physical activity and healthful food can affect mood. Getting adequate sunlight and sleep can also help. In addition, women find that a variety of activities can be useful as coping strategies, including meditation, journalling, reading, listening to music—it comes down to the individual, so explore what works for you. Medication and herbal remedies may also be options for you, but be sure to discuss them with your doctor, as they can interfere with some HIV medications.

- Erin

The Well Project also has information on women, depression, and HIV, which can be found here.

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

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