Barbara Schneider recently completed a participatory research study of housing for people diagnosed with mental illnesses, called “Hearing Our Voices.” This innovative project involved nine members of the Peer Support Unsung Heroes Program of the Schizophrenia Society of Alberta, Calgary Chapter as co-researchers. The team investigated the housing experiences of people diagnosed with mental illnesses, particularly those who are or have been homeless. The project produced readers' theatre performances, a documentary film, a graphic novel, a photomontage, and an exhibit that has toured Canada. The Social Sciences and Humanities Research Council of Canada funded the project.
When Barbara’s son was diagnosed with schizophrenia in 2000, her research interests hit closer to home. One year after his diagnosis, she shared with him that it had been a really tough year for her. Adjusting to schizophrenia as a permanent feature of their lives had been a challenge. His response surprised her: in contrast, he said that it had been a much better year for him. He finally had access to medications, and an explanation for the symptoms he had been struggling to live with.
“Through all the counseling and conversations, I realized that I had no concept of my son’s perspective. I came to see that testimonies of people living with schizophrenia are missing among all the expert opinions,” says Barbara. The Hearing Our Voices participatory research project and her own experiences with her son have given her a much greater appreciation for the complex nature of the struggles, abilities, and strengths of people who live with schizophrenia. “I have seen that strengths have often been submerged beneath what is perceived as the problem of mental illness.”
The central theme to emerge from the research project is the tension between care and control experienced by people living with mental illness and housing instability. People want and need care from systems and providers, but resent the surveillance and control that always seem to accompany care.
“In order to receive a disability pension in Canada, people are asked to reveal their entire lives and put up with all sorts of scrutiny. Our researchers shared that as clients they have been told to take responsibility, but that there is a narrow range of behaviors that qualify. They are often told, ‘do this our way’” says Barbara.
Barbara also talks about how gratitude can lead to people being less vocal about their needs. For people who are living in poverty, there is an expectation of gratitude. “If you can’t pay with money, you have to be grateful for what you receive. In this context, it can be difficult to ask for changes in how care is provided,” says Barbara. Speaking as a mother, Barbara talks about her desire that care be seen as a gift. “I would like to reframe care as something offered as a gift without strings attached to it,” says Barbara.
Barbara talks about additional dimensions of this tension in the context of what she calls an “illness identity.” “People have to take on an illness identity to receive care. Once they accept a diagnosis, they are stuck with that label in their lives.” Testimonies from those with schizophrenia reveal that the diagnosis affects people’s abilities to interact with service providers. It often results in the perception that people are being “non-compliant.” Barbara sees the use of the term “non-compliant” as a lack of insight on the part of providers. “I think it is more useful to see people who are being labeled as “non-compliant” as struggling to negotiate the complex dilemma that this tension between care and control produces,” says Barbara.
Research results have provided a legitimate platform for people who live with schizophrenia to share their own expertise. The team has created recommendations for providers to address the tension between care and control.
“My hope,” says Barbara, “is that people see this work and take something away that changes their own practice. I hope it helps providers understand that people who are receiving services need to be included in decisions rather than having things imposed upon them. That is the message of our group: inclusion as partners,” says Barbara.
Many of the members of the participatory research process came to the table with a lack of confidence and a history of being dismissed. As a result of this process, many members of the team became skilled interviewers and presenters. They are now acknowledged in the community as experts and are sought out for their opinions. “The Hearing Our Voices participatory research process has provided a platform for people who live with schizophrenia to become legitimate commentators on their own fate. It includes voices that have been missing from public discourse,” says Barbara.
Barbara is currently working on a project on representations of homelessness in Canadian newspapers. This project will involve journalists and people who have experienced homelessness working together to discuss and possibly change how homelessness is represented in the media.
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