Features | Radical community research

Reflections on alternative research through the lens of healthcare

This year, a social justice research project pulled me out of the lab and into the community. As a participant in the Community-University Research Exchange (CURE), I worked with Solidarity Across Borders (SAB), a Montreal-based migrant justice network, to investigate access to healthcare for immigrants without status in Montreal. Over the course of the project, my conceptions of healthcare systems in Canada as ‘universal’ were dramatically challenged. I also thought hard about who are the primary producers of knowledge in our society, whose accounts are entered into the canons of academic literature, and about the pitfalls of traditional relationships between academic researchers and marginalized groups. Alternative research programs like CURE can present a meaningful way for students to apply skills to local needs – in my case, the need for healthcare. Alternative research programs can potentially reinforce values of shared production of knowledge, local relevance, and critical thinking about the impact of our work.

Healthcare for immigrants
When immigrants in Quebec find themselves in need of a doctor, two government programs define whether or not care is available and accessible. The Interim Federal Health Program (IFHP), operated by Immigration Canada, delineates who is covered for what healthcare services. Refugee claimants, victims of human trafficking, and migrants from countries Canada has placed under a moratorium on deportation are insured for essential health services, while other groups including temporary workers, immigrants with temporary status, and undocumented migrants are covered only for treatments for conditions that could pose a threat to public health or safety. At the provincial level, the Régie de l’assurance de maladie du Quebec (RAMQ) provides more comprehensive insurance, but the program mandates a three-month waiting period before immigrants can enroll and only if they are eligible under its own set of citizenship and immigration requirements.

An estimated 20,000 to 50,000 migrants without regularized status living in Montreal do not qualify for medical insurance under either program. In Canada, availability of care is largely predicated on hierarchical categories of citizenship and identity. This notion of who is and who is not Canadian dissolves when we consider this country’s colonial history, and that many of those who draw these lines of identity are themselves settlers upon Turtle Island. Activist and organizer Harsha Walia extensively describes in her book Undoing Border Imperialism how this results in the marginalization of minority groups. Additionally, immigrants often arrive in Canada through forced processes of displacement abroad only to meet rigid immigration regulations at the borders and pressure to conform to capitalist ideals of the ‘good’ and ‘productive’ migrant. Immigration regulations and societal stigma, along with geographic location, financial cost, and lack of language translation services are among the many barriers that make healthcare inaccessible for non-status immigrants. An alarming number of epidemiological studies are citing data that indicates that non-status migrants – those who fall between the cracks of health insurance programs – are experiencing negative impacts to their physical and mental health.

Community healthcare research
Last fall, in a collaboration with SAB, organized by CURE, I set out to document what health services are available to immigrants without regularized status in the Parc-Extension neighbourhood of Montreal. SAB is a local migrant justice network that organizes to build dignity and support for migrants contending with Canada’s inequitable and rigid immigration system. The demands of SAB’s Solidarity City campaign are safe, affordable, and confidential care for all. My task was to contribute to key resources for newcomers and allies in Parc-Extension, including the development of a database of accessibility information on local healthcare services. While the IFHP and RAMQ define provincial and federal regulations regarding access to care by strict categories of identity and circumstance, a fundamental finding of my work with SAB was that accessing care is much more complicated at the local and individual level.

Through interviews with doctors, nurses, social workers, and other healthcare professionals in public clinics around Parc-Extension, I found that there exists little formal, written policy that is applied locally by those who offer care to immigrants without status. Though all agreed that access to healthcare is a fundamental right, varying practices and accessibility barriers among clinics mean that basic healthcare needs are not always met. At the local clinic, CLSC Parc-Extension, patients without RAMQ cards or IFHP certificates face a host of restrictions; they can only see a doctor during walk-in hours, at a cost of $100 per visit, and translation services are available only with appointments booked in advance.

One doctor described physicians’ constant and conflicted responsibility to weigh the cost of treatment or test for a patient without coverage because costs are so quick to add up and medications are difficult to prescribe. Another doctor recounted the story of a woman who has been living in Montreal without documentation for 20 years, ineligible for services such as childcare benefits, because she fears deportation or detention should she begin the regularization process. These concerns surrounding disclosure of patient status have become more prevalent following reports of Canadian Border Security Agency (CBSA) agents arresting individuals inside health facilities, making hospitals spaces of contention rather than neutral and safe spaces of care.

An often-identified key barrier is that immigrant groups feel disempowered by a lack of knowledge of how the healthcare system and insurance regulations work. Cuts to the IFHP in 2012 – and more recently a temporary expansion of IFHP coverage this past November (following a Federal Court ruling that the 2012 cuts violated the Canadian Charter of Rights and Freedoms) – have only exacerbated the situation. Many immigrants who may have some healthcare coverage aren’t aware of the existence and extent of that coverage, and therefore aren’t able to access the care to which they are rightfully entitled. The perspectives of care providers and the challenges they face also impact the availability of care, especially when no professional resources, local policies, or best practices exist. According to one participant, “[A] French-Canadian doctor coined the term ‘Je m’en fout-isme,’” or “I don’t care-ism,” because physicians would categorically refuse care for patients even with IFHP coverage because of the administrative burden of obtaining reimbursement for care.

Through my work with SAB, I sought to curate a useful and accessible database of information for non-status migrants seeking care in Parc-Extension. I learned that barriers including language, cost, confidentiality, and physical and geographical accessibility of clinics effectively lock undocumented immigrants out of vital health services. I had hoped to understand what local policies that might serve to expand access to care for those with precarious status, and found that in Quebec, systemic racism, rigid immigration guidelines, and the criminalization of identities still stand in the way of needed policy change toward a more accessible and equitable healthcare system.

When social inequality becomes the project of academics, these minority groups rarely see themselves reflected in academic literature as the makers of knowledge.

Knowledge making and radical research
Research partnerships between organizations and students happen every year in Montreal through CURE, a collaborative project of QPIRG-McGill and QPIRG-Concordia. CURE facilitates partnerships between students and local community organizations to carry out action-oriented research with a focus on social justice. The emphasis of CURE’s mandate is on local, grassroots research that contributes to tangible social change. In doing so, CURE seeks to challenge systems of privilege and hierarchies of knowledge that universities maintain and reinforce. These alternative research programs outside the university setting invite students to approach the work of social change with academic rigour and an activist spirit.

Through CURE, students can also undertake projects for academic credit. I completed my project as the focus of an independent study course through McGill’s department of Geography. Researching immigrant access to care alongside a community organization through an academic course, I encountered one question over and over: who holds the power to produce knowledge in our society? Historically, minority groups have been the ‘subjects’ on whom research is ‘done’ and from whom knowledge is extracted. When social inequality becomes the project of academics, these minority groups rarely see themselves reflected in academic literature as the makers of knowledge. Many academic fields are moving toward inclusion of lived experiences in their literature, but we have yet to reach a point where the authors of these accounts are primarily the people who live them. Meanwhile, ethics committees carefully detail guidelines for confidentiality and data storage. Consider that these standards are set out by the institution sponsoring the research. Whom are these guidelines meant to protect?

CURE can play a necessary role in mediating research partnerships in an equitable and useful way. Instead of perpetuating exploitive relationships based on the authorship of knowledge production, research questions are self-identified by the organizations in need of labour in the form of research. For many collaborations, informed consent is replaced by a process closer to reciprocity. In a culture that celebrates the individual, the best, and the genius, alternative research groups like CURE are steadfastly facilitating collective research that meets real needs and contributes to change at the grassroots level.

From the moment I began working on this project in earnest, my intention was to speak with, not for, immigrants with precarious status. In proceeding one by one through clinics in Parc-Extension to assemble information about health services, I learned about many barriers immigrants face in accessing these services. Unfortunately, however, I was never able to work closely with the immigrants affected by barriers to healthcare access or consult individuals about their lived experiences. My portrayal of the situation is a poorer one because of it, one that does not explore or amplify the the agency, self-determination, or resilience of immigrants confronting precarious status and successfully overcoming barriers to the healthcare system. CURE was crucial in guiding me to navigate these issues transparently and ensuring that ultimately, my project worked toward establishing an important resource in the Parc-Extension community. The most valuable part of radical social justice research for me was the ongoing conversation with my academic supervisor and my collaborators at CURE and SAB surrounding these considerations. Alternative research partnerships, where a commitment to the community group exists from the start, offer a model for researcher accountability to the groups they are serving, and demand shared production of knowledge. Moving forward, an important part of maintaining equitable grassroots research partnerships in this way will be to ensure that consideration of anti-oppressive principles, questions of voices consulted, and emphasis on participatory process don’t simply become items to check off to meet an arbitrary requirement of self-reflexiveness.

Alternative research programs on campus
The buzz on campus surrounding radical, alternative, applied, and community research is growing. This past September saw the launch of the ECOLE project on University, which is part model for sustainable living, part community space, and part nascent research institute for applied student research. (My role as a facilitator and researcher-in-residence within the ECOLE collective was what prompted me to take on this project in the first place.) ECOLE has its roots in the Alternative University Project that grew out of the rising printemps d’érable and student protests in late 2011 and the spring of 2012 as a way of organizing a space for free, democratic, and exploratory learning outside of the university. ECOLE, then, is one vision of what a university of the future could look like: connected to the surrounding community, making use of socially and environmentally sustainable practices, operated by consensus by its members, and facilitating self-directed learning and research.

In another example of successful community-based research, since 2008, a number of McGill-based applied student research projects, collectively known as the M(X)Ps, where X = the research focus, have been taking shape. The groups include the McGill Food Systems Project, the McGill Waste Project, the McGill Energy Project, and the McGill Spaces Project. The M(X)Ps have carried out research funded by the Sustainability Projects Fund on campus practices, and then presented findings to staff and administrators at McGill for implementation and institutionalization of identified solutions. Independent study courses are available in many faculties, and so the academic infrastructure to support students interested in undertaking applied, community research exists. Groups like CURE and ECOLE, as well as units like the McGill Office of Sustainability and the Office of Undergraduate Research in Science, offer resources to enable and support these collaborations.

Institutional research projects have historically separated the producers of knowledge from its subjects, and universities have rarely had constructive and positive relations with neighbouring communities. Radical research alternatives in Montreal are transferring power from institutions to people. In the process, they establish reciprocal, mutually beneficial community-institution relationships that bridge students with meaningful work. These projects are occupying the spaces between the university and the neighbourhood to turn the traditional research paradigm on its head.

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