Researching the Politics of Inclusion

This post was written by Jijian Voronka who teaches at the School of Disability Studies and is a SSHRC Postdoctoral Research Fellow in the Dept. of Women’s and Gender Studies at Rutgers University.

A photograph of Jijian Voronka.

In Ontario, the participation of disabled people as ‘experts by experience’ in health, education, and social service systems is growing, and the advocacy work that we do as faculty, staff, students, and alumni at the School of Disability Studies has helped make inclusion a ‘best practice.’ For the last several years, I have greatly benefitted from the implementation of community-based inclusionary practices. I can now use my usually denigrated experiences of homelessness and psychiatric disability as entry points into systems that previously were built on our exclusion. This involves working and offering service to a broad range of academic, community mental health, and social service sectors.

Yet, I am also a researcher. And as the culmination of inclusionary opportunities continued to grow, I became curious as to just how the inclusion of people with psychiatric disabilities was organizing. From 2009-2015 I worked for the Mental Health Commission of Canada as a consumer research consultant: in this role, I was to explicitly draw on both my academic training and my lived experiences of homelessness and distress to inform my work. Drawing on lived experience in work roles is now called ‘peer work.’ For me, doing peer work included promoting peer inclusion, supporting fellow peer workers, and building and consulting on research, reports, policy, and procedures.

Most significantly, this work was done for the At Home/Chez Soi project (2009-2013), a $110 million national research demonstration project studying how to best house the ‘chronically homeless mentally ill.’ Here, I helped implement and support peer workers in 5 cities across Canada in a broad range of roles: as peer researchers, as peer support workers, as peer organizers, facilitators, consultants and more. Thanks to substantive project investments, over 100 roles for peer workers developed throughout the course of the project, and I established a National Consumer Panel and Peer Research Group to bring us together to work on a national scale.

I also used this site as a case study for my PhD research. This project offered the opportunity to explore inclusion as a technology of rule: how inclusion is organized, managed, contingent, and what changes it brings to workplaces [for this study, worksites included universities, community mental health teams, housing and homeless services, and a wide range of community organizations]. More importantly, I wanted to learn how other peer workers experience inclusion: what does it mean to do peer work? What is it like to have to work from this identity every day? How do we manage our character, comportment, and self-presentation so that we are recognized as ‘peers’? What are we asked to do in our work? Where is our work understood as useful; and where is our work understood as useless? Drawing from knowledge that you learn in DST 88, I used qualitative mixed methods to explore peer inclusion in practice: a four-year ethnography drawing on participant observation, autoethnography, institutional ethnography, critical discourse analysis and in-depth interviews with other peer workers. I used Disability, Mad, and other Critical Studies to inform the study.

What my research shows is that inclusion is a tenuous business. It can be difficult work for peers to embody and endure. This does not mean that inclusion shouldn’t occur. What it does mean is that we have to map just how inclusion unfolds for disabled people when we are suddenly brought in to work for systems that have long been sites of systemic discrimination. We have to map to begin to be able to imagine how to do better, differently, otherwise.

There are clear terms of engagement that govern peer inclusion, including that we have to actively try to manage our madness. We must be ‘authentic’ enough to represent the ‘homeless mentally ill,’ yet simultaneously respectable enough to sustain employment in professional settings. Further, the direction of our work is oriented in very specific ways. Peer work is recognized and celebrated most when we undertake what has been termed ‘affective labour:’ the often gendered economy of care that supports endangered peoples. This means sharing our stories, inspiring others, and helping those who are going through similar experiences. Yet, when we try to critique or change the conceptual frames that govern us — for example, the policies, professional procedures, discourses, and structures that are actually producing and sustaining our marginality — our work is ignored, blocked, or gets us into trouble.

Further, peer work presents a paradox in labour relations. While peer work offers clear benefits to those of us who are usually excluded from workforces, peer work remains a form of precarious labour that contributes to the deskilling and fragmentation of the unionized health and community service workforce. Most often, peer work is paid less than other professions, and is carried out by people who are marginal not only by virtue of their status as disabled or formerly homeless, but also by virtue of their position in terms of gender, race, class, sexuality, culture and more. Thus, the use of peers in health and social policy delivery is not simply a matter of inclusion, but it also entails a shift towards low-paid often non-unionized labour and is thus part of a complex political economy of care work. Our inclusion changes things: it both benefits us, and creates new complex problems. It also benefits neoliberal austerity strategies and alters the landscape of how labour is organized in health and social service system settings.

In short, our ‘inclusion’ needs to not only be premised on helping to support those made marginal, but also orient towards dismantling the systems of oppression that create and sustain our subordination. Our work as disability activists and advocates is to continue to keep an eye on inclusionary practices, and how they can at once improve, change, and sustain our position as subjugated peoples as we intersect, resist, and incorporate into governing ruling relations.