By Jane Shulman
Women and trans people talk about gender and/or sexual marginality and their experiences of cancer health, care and support in digital stories.
Digital storytelling is one of the ways that people who have had cancer are using expressive arts to understand and share their experiences and to make their voices heard. Cancer’s Marginsis an arts- and community-based lesbian, gay, bisexual, queer and trans (LGBQ and T) research project about people who have had breast or gynecological cancer.
The goal of the project is to have a better understanding of the ways that people who may be on the margins of the cancer world experience the disease – in this case women, two-spirit and trans people who are sexual or gender minorities. The research also looks at health and support systems, and how participants gather and share information related to cancer.
The research project, funded by the Canadian Institutes of Health Research and led by Dr. Mary K. Bryson at the University of British Columbia, includes LGBQ women, two-spirit and trans people across Canada. Researchers in BC, Manitoba, Ontario, Nova Scotia, New Brunswick and Quebec are interviewing people who have had breast or gynecological cancer to learn about their experiences. After being interviewed, each participant is invited to take part in a digital storytelling workshop.
In Quebec, Dr. Geneviève Rail, director of the Simone de Beauvoir Institute at Concordia University, is the Cancer’s Margins project leader.
The project is helping to build a knowledge base about the experiences of LGBQ and T people who have had breast or gynecological cancer, and it is also helping people (and their stories) to be more visible.
These cancers are often coded with meaning that other cancers are not. Losing one’s breasts or one’s ability to reproduce has intrinsic gender and sexuality implications, making these cancers particularly compelling to research in a queer context. There tends to be an assumption within health and support systems that people dealing with cancer are heterosexual and/or cisgender (a person who is not transgender). And if they identify as LGBQ or T, that fact is often seen as irrelevant to their care. There is a gap in cancer services for people who identify as queer or trans and a lack of knowledge about how their needs might differ from heterosexual women or cisgender people.
In June 2015, Cancer’s Margins held its first digital storytelling workshop in Montreal. The three-day intensive saw participants paired with mentors, many of whom had first-hand cancer experience as well. The role of the mentors is to help shape the stories and images that people have into 5-mnute videos that focus on one part of their cancer story. Two such workshops have been held in BC, and future workshops will be held in other parts of Canada.
Over the course of the weekend, participants work closely with mentors to build a narrative. They are asked to bring photos, video clips, music or other materials that might help tell their story. The pairs map out the story and a script, and meet with the whole group to workshop their ideas and share feedback. By the end of the weekend, the stories are mapped out in detail, voice-overs have been recorded, and images are set. They are then edited by professionals and presented at a screening that friends and family are invited to attend. Some participants choose to keep their digital stories private, but most are eager to share them with a wide audience.
Told with photos, video, music and even drawings, the digital stories are deeply personal snapshots from narrators’ experiences with cancer. They look at all facets that might be part of a cancer experience, including the impact on relationships, sexuality, gender and body image. The stories are not specifically queer or trans in their scope, but many of them touch on themes that might resonate with people who identify as LGBQ and T – people whose stories are not often reflected in cancer narratives. The stories are relatable, genuine and incredibly engaging.
In one story, the narrator describes the trepidation she felt when she decided to tell her oncologist that she was bisexual. She was not afraid of being judged – she was concerned that the doctor might ask her why that mattered. She did not want to have to explain that her sexual orientation was an important part of her identity, and that in order to feel at ease with the person she was entrusting with her life, she wanted the doctor to know about it. Another story looks at the relationship struggles of two women as they try to parent a toddler and deal with cancer’s physical and emotional challenges.
The stories are poignant. They are quite different in style and content, but each story reflects the kind of insight that can be gained from reflecting on a cancer experience and its aftermath. The narrators seem to have a distance from their experiences that allows for perspective. But they remain connected enough with cancer so that the viewer can feel the emotions that are still very much alive.
Christiane Wellsted-Olivier was 42 when she was diagnosed with ovarian cancer. Twelve years later and with her cancer in remission, she continues to think about the experience and how it has affected her life. She created a digital story in Vancouver, and was eager to come to Montreal to do the workshop again.
“There are people who are particularly emotionally-based,” she says. “I’m like that and I think my cancer was emotionally-based. In a case like that expressive art is key to helping heal. It just is.”
She was especially comfortable being in a group with other queer people. At the Vancouver workshop, she remembers saying to herself “Wow, everyone is non-heterosexual and everyone has had cancer!”
She says that the art itself is part of the healing, but being surrounded by people who are going through the same thing and who are expressing themselves is therapeutic.
“You don’t just hear what they are saying, you get to see it. You see visual representation of what they feel,” she says. “It’s amazing. It felt like I turned a corner last year by sharing with people around me.”
To view the Cancer’s Margins digital stories and to learn more about participating, visit www.lgbtcancer.ca.
Jane Shulman is a health researcher and journalist. She worked as Director of Knowledge Exchange at the Canadian Women’s Health Network and was Coordinator of Special Projects at Breast Cancer Action Quebec.