The United Nations is set to collaborate on the Griffith Health Institute’s innovative 1000 Voices disability research project.
Professor Lesley Chenoweth (pictured), head of Griffith University’s Logan campus, travels to Bangkok on Sunday where she will participate in a workshop with delegates involved in a UN action research project on Disability, Poverty and Livelihoods.
Professor Chenoweth, who has driven the project since its launch two years ago, will provide training to community organisations planning to conduct narrative research with people with disabilities in Asia and the Pacific.
“They are very interested in our methodology and it is possible that the framework used for 1000 Voices could be developed for a much bigger study across the Asia Pacific region,” she said.
Dr Naomi Sunderland from the GHI’s Population Health Research Program presented the 1000 Voices project to an expert group of UN delegates in Thailand last year. Her presentation triggered a keen interest that led to this weekend’s framework session.
Griffith’s 1000 Voices is a web-based story-telling exercise which invites people with disabilities to describe their personal experiences. Its aim to record the voices of 1000-plus different participants is a long-term plan.
This Griffith initiative offers not only experience but also a potential model for the research to be implemented by the UN’s Economic and Social Commission for Asia and the Pacific (ESCAP).
More than 120 narrators have logged on and detailed the most intimate and personal aspects of life with a disability since the project launched almost two years ago. These range from a teenager’s account of how pregnancy led to paraplegia to the tale of one man’s life with cerebral palsy and epilepsy.
“It’s a research project with a difference. It’s a public awareness project first and a research project second,” Dr Sunderland says. “It’s a participant led way of collecting data where we say ‘Let’s hear what your life is like’.”
Each voice contributes a quality of data not previously available in the area of disability. A greater understanding of the barriers facing people with disabilities is anticipated as a result.
“The methodology represents a significant handing over of participation,” Dr Sunderland says.
“If we say we’re going to let you speak in your own words, it has to be in your own words. A story can be told through narratives, poetry, song, photography, multimedia.
“People sometimes hold on to their stories until they are ready to let go. Sometimes they tell the story in parts.
“It takes years for a quality project to take shape and yield meaningful, effective results. This is not a quick grab research project.
“We are collecting voices and we are collecting an audience to listen to those stories. It’s also about exposing policy makers to the story and getting them to engage with the data like never before.”