Understanding HIV through my films

Spaces of Interpretation For Positive women ( a presentation at the Understanding HIV and Art panel at the OHTN on Oct 24, 2016)

Storytelling through film can be an incredibly powerful tool for gaining new perspectives and creating shared understanding. The past 15 years making documentaries including a decade long focus on social justice films – mostly about the experiences of marginalized communities in Canada – has finely tuned my artistic practice with a special awareness about the sacred politics of documenting the lives of racialized and/or gendered bodies.

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When asked to participate on the Understanding HIV and Art panel at the Ontario HIV Treatment Network (OHTN) conference it forced me to go back into the crates, if you will, and analyze the films I made about women and how they connected with each other and how they linked to my MFA thesis film that is currently a work-in-progress.

 

The Woman I Have Become

The process took me on a bit of a time warp. Some of these films were often the first of its kind and the advocacy  that came out of them at the time was considered groundbreaking.  For example, The Woman I Have Become (2007) commissioned by Women’s Health in Women’s Hands Community Health Centre was the first film to capture the plight of real African, Caribbean and black (ACB) women living with HIV in Toronto ( even though with along with Indigenous women, they had the highest new infection rates in the province). ACB women didn’t get the same level of services as gay men and when they did it get service it was often under-resourced and/or they would face systemic racism.

Today African, Caribbean and black women are quite visible in the HIV/AIDS service sector and more health care and service providers are approaching their care from an anti-oppression framework.  Who knew that a film that showed the personal journey of  black women from infection, to diagnosis, to treatment and on their path to self-empowerment would have been so significant. The film premiered on World AIDS Day December 1, 2007 at the Hot Docs Bloor Cinema.  The film was also showed at the International AIDS conference and UNAIDS in Geneva and I remember it becoming a game changer for me in terms of hot button issues that interested me.

Eventually,  The Woman I Have Become  was translated into five different African languages, Swahili, Amharic, Somali, Arabic and French, courtesy of the Minister of Health and 10,000 DVDs were produced for national and international distribution. It has had over 200 community screenings around the world and is still being used in the sector to build awareness about the issues of black women living with HIV.

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Lisingu and Chantel (L -R)  in the film The Women I Have Become commissioned by Women’s Health in Women’s Hands, ACCHO and Voices of Positive Women

 

 

 

 

Positive Women: exposing injustice

If you ask most Canadians, they are unaware of how our HIV non-disclosure laws complicated the lives of HIV positive women across the country.  However,  thanks to opportunity to produce and direct the film Positive women: exposing injustice (2012) commissioned by the Canadian HIV/AIDS Legal Network, featuring the stories of four women Jessica Whitbread, Lynn Thompson and Claudia Medina and a woman we named DC who we couldn’t reveal her identity because there was a media ban on her case that was before the Supreme Court of Canada,  I learned why it is so difficult for women living with HIV/AIDS to disclose their HIV status; and also why she may not, even though the law says that she should.

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Jessica Whitbread in the film Positive women: exposing injustice (2012) by Alison Duke commissioned by the Canadian HIV/AIDS Legal Network.

The Legal Network ended up using this film as a lobbying tool against the Supreme Court of Canada (SCC) who at the time was about to revisit the R v Currier (1998) ruling that opened the door to the criminalization of HIV people in Canada for non-disclosure. The SCC was using more recent cases such as R v DC ( i.e. our participant a white woman arrested and charged in Montreal ) and R v Mabior ( i.e. a black man arrested and charged with sexual assault in Hamilton) in their renewed discussion and eventual ruling  scheduled for the end of that year.

Visually the film is a bit of a hybrid with three distinct narratives interplaying with each other. Part of the narrative tells the stories of how each of the women interacted with HIV criminalization. Another part is a bit of an investigation trying to provide clarity to a law that forces people living with HIV to disclose their status to sexual partners if there is a significant risk of transmitting the infection. The film navigates what “significant risk” means in a world where technological and medical have made transmission of HIV very difficult and living with HIV no longer a death sentence.

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The other part of the narrative is experimental. Faceless/nameless women interact with a piece of billowing red fabric like a Greek chorus. The scarf is an an expression of the stigma and discrimination women living with HIV face in society and the media. Throughout their interaction with the fabric, I was attempting to emote a range of emotions women feel with this law,  from frustration to anger but also show courage and strength  Positive women exposing This lead to my next HIV film commission by the Legal Network.

 

Consent

The documentary Consent (2015), which I refer more as a discussion about HIV non-disclosure and sexual assault law, evolved out the 2012 Supreme Court of Canada’s ruling which changed the law to be even more precarious and there was a fall out between feminist, HIV activist and women’s rights advocates and women studies historians. Over the years there had been an growing effort to decriminalize HIV non-disclosure. However, there was a philosophical split over the appropriateness of the law that disclosure is an act of informed consent whereas non-disclosure is an act of sexual assault. This was so ironic.  When you look at the legal evolution of Canadian consent law, it was initially created to protect women from sexual assault, but now the legal duty for women living with HIV to disclose their HIV status increases their potential risks to criminalization while making them more vulnerable to violence.  This philosophical division was so deep, it was starting to affect the advocacy work for women living with HIV, as well as their quality of social services and health care. It was time to talk!

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With primary impetus of Consent being to heal wounds. We decided that it would be important to provide a brief history of how the consent law developed in Canada and why to set up the context for the conversations. Then, instead of engaging in a investigative style to find the absolute truth, we tabled all sides of the argument with the hope that violence against women advocates, consent law advocates, women’s right advocates, and historians could in their arguments come up a better solution. I think we accomplished that.  Another thing I want to not is because there were no visuals to represent these philosophical tensions I worked with illustrators Nikila Mor and Jeff Duke (my rapper/graph artist brothers) to create them.  We went with B&W sketches that was a throw back to protest posters. We came up with at least 2 dozen images that represented this conversation. The visuals were not supposed to be clean, but a bit messy and incomplete much like the conversation itself. I wanted the film to position the interview subjects also as audience members, and often layered them with these graphics. I think the film was successful because essentially we were forcing the community of women’s rights advocates, feminist and HIV activists interview subjects to engage with one another. It was like watching a clash of ideas and being forced to come up with a strategy that supports each other and more importantly women living with HIV.  Time is of the essence.

  • Nikila Mor is an illustrator/filmmaker in my MFA program at York University and was able to come on board and since I’ve been making films I’ve leaned on my brothers artistry for story boarding and graphic in my work.
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Illustration by Nikita Mor and Alison Duke for the documentary Consent (2015)

Looking at all this work you will notice a progression of style. There had been a lot of technical changes and advancements in film over the past 10 year and I really tried to embrace it in the work. In the first film, The Women I Have Become,  I did most of the filming myself in an effort to manage the confidentially of some of the participants who gave us great access but didn’t want to showing their faces. Its mostly a handheld documentary shot in the style of investigative journalism with available lighting. We filmed on mini-DV tapes in standard definition.

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Unlike, the Woman I Have Become, shot on miniDV, my current films are shot digitally in 2K and 4K resolutions. In the more recent films, I’m shooting with professional  cinematographers such as Kim Derko and Robin Bain, so the films are lit beautifully and the images bounce of the screen with vibrant colour and attitude. Besides the technical maturity of the material ( which makes me sometimes not want to look at the earlier work), there are a few other reasons causing me to pause.  Seeing images of the late, Rhonda Stephens (2007) and recently deceased,  Devica Hintzen (2016) featured in the Women I Have Become and others who I’ve met along the way but didn’t really know like Kim Johnson or only heard of like Marisol Desbiens makes me feel so sad. These films are real documents of lives. I see the work as a testament to them and the countless other faceless/nameless HIV positive who have passed or have experienced great violence.  Just because they-have-a-socially-stigmatizing-infection that spreads through bodily fluids such as blood, semen and breast milk is no reason for their oppression.  So I look at these films as evidence of a moment of time in our collective history when it comes to HIV/AIDS and about the change we hope for.

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Saskatoon, First Nations HIV Activist, Lynn Johnson in Positive Women: exposing injustice

When revisiting these works again,  I am hopeful that people embrace the women participating in the films.  The fact is that these women didn’t just do interviews.  They let me become a part of their life. I’m still friends with many to this day. I’ve made these films because HIV disclosure still remains such a loaded ask. To disclose anything deeply personal is an action of faith – an action of trust. But  HIV disclosure requires people to be okay with being the most vulnerable yet still be brave. I hold onto the fact that these women have disclosed to me is a responsibility to get the story right!   Their  disclosure on film is a special gift to the world!

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Graphic images from Consent (2015) commissioned by the HIV/AIDS Legal Network.

Note:  All of these films and videos presented here have been used within the HIV/AIDS medical and social services sector and as educational resources in the schools of social work, women’s studies, medical sciences and law.  The attached links are available free of charge to use for educational purposes. If you would like to purchase high resolution copies with discussion guides or would like to donate to organizations who are commissioning these works, please contact:

The Process of Thinking

The process of thinking about how the work connects to one another does take some work on the part of the audience. You have to know a little bit about the history of HIV laws in some cases.  And sometimes the law has changed between each production. I try to provide some of the information in the films, as my way of keeping tabs on the history of the movement.

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When commissioned to make work about HIV, I really make an effort to work as closely as possible with the community members, participants, and/or an advisory team because I want to make sure that the films represent the issues in a way they feel confident that they can use the films for advocacy, education and research. But I also push for the community to think about how an art form such as filmmaking can be used to tell stories.  A lot of the times because the issues are so current that it hasn’t fully been documented or there are no images to represent the issue, and I welcome the opportunity to create new images. The degree to which some of the more ethereal imagery can represent the emotional journey of the issue, is a challenge. Sometimes  creating specific illustrations or manipulate existing images to create not something new and unique but to update the conversation.

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Raven Dauda in Disclosure courtesy of ©Goldelox Productions

Manipulating newspaper clippings, archival materials, personal photographs and/or video are a part of this practice.  I make it a practice, that the community is able to screen and comment on rough cuts and fine cuts. This really helpful because sometimes they have the best solutions for challenges the film may have or what needs to be communicated better. When the films are complete I go to the first premiere and that’s it.

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Conrad Coates and Raven Dauda in Disclosure © Goldelox Productions

The community is encouraged to take the film out into the world without me to have their own conversations about it. They are free to re-critique the work and talk about what they like and/or what they don’t like, without worrying about hurting the feelings of a sensitive filmmaker.

Two things that I have learned documenting this world is how even more powerful the it becomes when you are able to engage the audience. Most of these films are 20-48 mins in length but the discussions are often 45 – 90 mins long. The screening are quite the event! Another thing I have learned is the power of  empathy in

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Broadway Cares Screening NYC, for Positive Women: exposing injustice with HIV is not a Crime

storytelling. My next project on HIV is my MFA thesis film entitled Disclosure which is a hybrid film that’s part documentary, part drama.  I am exploring the use of empathy as a structural devise. It is an independent production that I am completing in 2017.

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FILMS

  • The Woman I Have Become (2007) about the experiences of 8 African and Caribbean living with HIV in Toronto Focused on stigma and discrimination from community and by healthcare providers. The film provided a space for black women with HIV to become more visible in health care system and ASO sector. Link to complete video:   The Woman I Have Become
  • Positive women exposing injustice (2012) looked at how HIV non-disclosure law affected 4 positive women across Canada. Opened a national discussion about the challenges that the criminalization of HIV- non disclosure presents for women living with HIV. Positive Women: exposing injustice
  • CONSENT (2015) a discussion between feminist, HIV activists, lawyers and academic. Provided a space for different groups of women on opposite sides of HIV non-disclosure legal measures and advocacy to voice concerns but also a path forward that empowers women living with HIV. Consent
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