Independent Living and Participatory Action Research

Participatory Action Research (PAR) means that people with disabilities are involved in developing the research questions that shape a project, as well as collecting and sharing the results. The role of the research leader becomes that of a facilitator who enables the natural leaders to emerge from the process, providing assistance and advice as required. The PAR model, therefore, allows people with disabilities to create solutions that promote new, meaningful alternatives to traditional models of service delivery, and it results in actions to create positive change.

PAR is a process that empowers individuals to have a voice. These three projects are examples of work that is happening across the country. Through initiatives such as these, we see consumer-directed action and change.

REGIONAL APPROACHES TO PAR

Aging with Disability and Dignity
The Independent Living Resource Centre, Halifax Regional Municipality, facilitated the Aging with Disability and Dignity project, which brought together a team of three researchers from diverse disciplines. The work was completed between October 2007 and March 2008. The project’s goal was to explore the changing needs of Nova Scotians who are aging with a disability. Throughout this research, consumers from across the province contributed through focus groups, traditional questionnaires and web-based surveys. The project featured a half-day educational round-table event that brought together consumers, service providers and decision-makers to discuss aging with a disability.

At every stage of the project, PAR methodology was utilized. The para- mount focus of the research was to give a forum for people aging with a disability to tell their own stories – to give a voice to a group often overlooked in the policy-development process. The project team consistently viewed their work through an independent-living lens, looking toward the goal of supporting persons with disabilities to “age in place,” continuing to live as active and independent members of their communities.

For more information on this project, please go to www.ilrc-halifax.ns.ca.

Voices of the People
This year, the Independent Living Resource Centre of St. John’s, Nfld., took the initiative to talk to consumers province-wide through a number of focus groups and town hall meetings, and shared their findings through the Voices of the People report. The PAR process involved meeting with over 250 consumers, municipal leaders, media representatives, family members, gov- ernment officials and others in order to share their experiences, expertise and ideas, and help create change.

The benefits of this process were enormous. The ILRC built relationships with many provincial organizations, government agencies, educational institutions, businesses and consumers that will help us share the IL philosophy with a great many people. The findings and recommendations are being shared with a variety of stakeholders from community to government, as well as with those involved from the start.

The whole process is meant to inspire change based on the stated needs of persons with disabilities and act as a significant resource when it comes to implementing legislation and policies that impact the lives of people with disabilities. For more information on this project, please go to www.ilrc.nf.ca.

A NATIONAL APPROACH TO PAR

Making a Connection – Literacy, Disability and Quality of Life: Participatory Action Research
During this three-year national initiative, a research team comprising consumers, IL Centres, literacy providers, academic researchers and Independent Living Canada will employ an innovative and empowering research model that includes people with disabilities in the design and delivery. We will research skills development and whether it has an impact on the daily lives of consumers participating in this project, using a PAR approach, wherein each member of the project is empowered to influence the direction of the research and the materials we produce as a result.

We have five participating IL Centre pilot sites working with local literacy providers to give a forum to people with disabilities as they define a path for personalized goals. By using a PAR model to follow these learners during their journey, we will collect and share their experiences, successes and challenges so we can learn how the process of reaching their goals is impacting their lives. In the final year of the project, the participant stories and research findings will be captured in a practical guide on partnership building, a research essay and presentations. For more details, please visit www.ilcanada.ca/article/literacy-405.asp.