Academics in the Service of Activism: Scholar/Advocates Engage in Participatory Action Research
By Laura Hershey ( LauraHershey@compuserve.com)
Research projects used to be the pure products of brain and book, whose usual fate was to end up catalogued on dusty shelves. People with disabilities, and other socially disadvantaged groups, were once only fodder for the pronouncements of experts.
That is no longer the only approach to scholarly work. Under a relatively new research model called Participatory Action Research (PAR), some academic researchers have adopted very different goals and strategies. They've rolled up their sleeves and joined in the hard work of analyzing and solving the real-world problems of what they once might have called their research subjects.
Major differences between PAR & traditional research approaches
In the PAR paradigm, those former "subjects" are more likely to be called "participants," or even "co-researcher." Dr. Tanis Doe, an experience PAR researcher who has just been awarded a Fulbright Fellowship, says, "Different questions get asked when you do Participatory Action Research than when you do traditional research." Those questions come not from researchers' ambition or curiosity, but from conversations with members of the communities in question, often in response to an urgent issue. "And then the results are not just someone's homework, not just a project that someone is doing for an 'A,' or for a grant," says Doe. "It's being done for the community, and the community has some vested interest in the outcome of it."
Examples of PAR driven research
Doe's own work exemplifies these ideals. For example, in 1998, she and Sally Kimpson undertook a study of Canadian women's experience with the Canadian Pension Plan (CPP), the nation's disability benefits program. Their research focused on the impact of rules which forbid recipients from working and earning an income. The project was funded by the Status of Women Canada's Policy Research Fund. The resulting 1999 report, Enabling Income: CPP Disability Benefits and Women with Disabilities, exposed the injustice of a system which penalizes women and men who try to utilize their talents to support themselves, but who still need some financial support. The report recommended new "work incentive" rules that "would allow disabled women (and men) to return to work when they are able, without penalty, until they can sustain themselves financially." [The report is available for download on the Status of Women Canada website at: http://www.swc_cfc.gc.ca/ ]
Far from being a dry survey report, the study explores "the complex reality of being a woman living with disability." The heart of the report is the section on "Perspectives of Women with Disabilities," with chapter titles like "A Consensus of Fear," "Enforced Uselessness: Issues of Worth and Well_Being," and "Hope: Light at the End of the Tunnel." These contain moving and honest testimony from women about the effects of policies which force them either to curtail or conceal their work activity. This testimony came from four focus groups, in different Canadian cities, in which women were invited to share their experiences and feelings about their economic circumstances.
Creating Openness & Trusting Environment
"We wouldn't have gotten the information that we got without the women giving of themselves and being very open," says Doe. She had to work hard to create an atmosphere where that openness was possible. The participants, she says, were "willing to talk about it with trust that we were not going to misuse it, that their names would not be used." In addition, the women were promised that they would be able to read the report before it was published.
Even more important in securing their cooperation was the fact that the women saw their participation as a part of a process of advocating for regulatory changes that might eventually free them from the current restrictions. This, too, is in sharp contrast to typical methods. "There has been a growing criticism and resentment towards the research community from people with disabilities because, for the amount of money that gets pumped into traditional research, there's very little direct benefit to people with disabilities," says Doe. "Because of that, there's a reluctance of people with disabilities to participate in research surveys and programs, especially when they're basically being used as an anonymous subject, with no real follow-up and no real contact with the researchers after their participation."
"Participatory Action Research offers a very different way of doing research," adds Doe. "Ideally, people with disabilities are actually in control of the research. Often they choose a subject, a question, and they decide on the population. They set the tone. They then hire someone who is not necessarily a member of the disability movement, but who is a professional and an ally in the movement."
Challenging power relationships
Participatory Action Research "challenges the power relationships that are involved in research," says Kari Krogh, a researcher at the Community Institute for Health Research (CIHR), located at the Ryerson School of Disability Studies. "The goal is, hopefully, to bring positive changes in the lives of people with disabilities, and shift some of the oppression that people face," Krogh adds. "We work together for the purpose of creating an outcome that can be useful."
Krogh spearheaded a project last year that had "useful" policy change as a primary goal. "The project looked at the impact of cuts in home support, and at changes in policy, from the perspective of people with disabilities," says Krogh. "These are essential, basic supports for people with disabilities -- bathing, cooking, dressing -- things that people need in order to participate as full citizens in community." In the province of British Colombia, near Victoria, the Canadian capital, authorities had announced new plans to cut health care costs. "They brought in large multinational corporations to provide home support at a lower rate," explains Krogh. "We also saw changes in what is considered home support: They cut out cleaning. They redefined health to no longer include hygiene! It was based on an economic formula. A lot of people were cut entirely off their home support services. Many people were dramatically reduced in their services [and/or] the nature of their services changed. People were getting ill; people were having accidents."
Innovative interventions
Alerted to the crisis by local advocates, Krogh began videotaping interviews with individuals affected by the cuts. "One woman that I interviewed had had seven workers who knew her needs and her lifestyle intimately," Krogh recalls. "Over the previous ten years she had 'trained' her bodily functions, so that three times a day she'd have a home support worker to help her with toileting. Overnight, that schedule changed to accommodate the new agency. She had all new workers."
Working closely with the local Home Support Action Group, Krogh videotaped discussions with people who use home support services. "The people who were being interviewed could review their own interview, and take out anything sensitive," says Krogh. Then she showed the rough video cuts to members of the Action Group. "When they looked at the videotape together as a group, they identified certain clips that stood out as significant," she says. "In that way, people with disabilities were involved in the analysis, bringing out the most critical points. In more traditional forms of research, a lot of that takes place in one room, with one person and a computer. In this case, it involved a dozen people, discussing, watching videos, telling their own stories."
The finished videotape was shown to 500 people in six months. "It was shown to decision makers, health administrators, people in various departments related to human services. Members of the Home Support Action Group were there to introduce the issue from the perspective of people with disabilities, and to talk about the local context and answer questions." That video continues to be used as an advocacy tool in the ongoing campaign to restore vital services in the region.
As such, the project was a good example of PAR. "Research for the sake of research is not adequate," Doe insists. "You actually have to do research to make social change happen. There's an implicit agenda for progressive change in doing research.
"If it didn't have an advocacy component, it wouldn't really be Participatory Action Research."
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