Tell your own story

A research project at Guelph University in Ontario helps women write their own storyline about what it means to have a disability.

In a three-day workshop called Project Revision, female participants aged 20 to 70 collect footage, music and still photos. They write out the story of their own disability, then edit everything together into a three-minute video. Along the way, they receive constant instruction, guidance and technical support.

At the project’s end, the videos are shared with health-care professionals. Eventually, the researchers hope to share them with the public.

Researcher Eliza Chandler (photo above) created her own digital story when Project Revision began. In her work, Eliza, who has cerebral palsy, portrayed the initial anxiety and shame – and eventual pride – she felt about her disability while attending university.

She says creating a story helped her to express ideas and feelings that she wouldn’t typically have been willing to discuss.

That’s why she believes that digital storytelling can be useful not just to adults, but to children with disabilities and their families.

“As a child growing up, disability wasn’t something I talked about with my family,” Eliza says. “It was obvious it was there, and we dealt with it, but we didn’t really talk about it. If I were to have experienced something like this with my parents when I was a child, I think it would have been really useful and helpful to open up tough conversations.”

Digital story making can also be an effective outlet for children who don’t have a strong command on language. They may be better able to access and share their feelings through pictures or music or tone of voice, Eliza says. And kids are often tech-savvy.

Creating a video about disability may be useful for parents and children.

“Everybody can make a video, and I really do mean that…” Eliza says. “The end product is accessible to a lot of people. Most people can find some sort of entry point into the digital stories.”

Eliza feels the process of digital story-making is an opportunity to alter common depictions of disability.

Too often people with disabilities are portrayed in the media as being pitiful, sick, shameful or regrettable. However, given the chance to represent themselves, Eliza says a different picture emerges.

So far, many participants have framed their disabilities as being "generative" – as adding something to their lives rather than taking away. While the women involved have not always shown pride in their disabilities, Eliza says they have presented them as a catalyst for new and positive things – like an improved perspective or a new relationship.

The stories are truthful and multi-dimensional, a necessary foil to the conventional depictions that are currently so pervasive.

“With a real story, [participants] are able to represent the lived experience, which is much more nuanced than a straightforward stereotype,” Eliza explains.

“It’s not a as though someone’s making an argument you can counter. It’s their truth. That’s really powerful, I think. And really necessary because these are stories that aren’t usually represented.”

Story by Megan Jones