Exploring Disability Identity and Disability Rights through Narratives: Finding a Voice of Their Own

Ravi Malhotra and Morgan Rowe, Exploring Disability Identity and Disability Rights through Narratives: Finding a Voice of Their Own (New York: Routledge, 2014)

How do disabled people understand and articulate their experiences of oppression and marginalization? What methodological and interpretive issues are at stake when study participants shape the course of research by relating their life stories? What lessons about Canadian disability policy and law can we extrapolate from this process? Malhotra and Rowe reflect on these questions by revisiting pioneering research work in the extraction and analysis of oral narratives from people with disabilities in Canada. They test the relevance of similar studies conducted in the US in the early 1990s by David Engel and Frank Munger. In so doing, the present authors seek to show how disabled people, through their life stories, construct their identity in the face of educational, employment and transportation barriers.

The book centers on the analysis of oral narratives from twelve physically disabled adults. Study participants include a unique population in that all had been or were actively involved in disability advocacy. The narratives “provide a powerful tool for understanding the meaning of disability in particular social contexts” (x). The authors accept the social model of disability, which sees disability as the consequence of socially constructed barriers to full participation in society, but they look at individual experiences of marginalization and oppression in order to understand how barriers are created and reinforced through law and policy.

The authors present powerful narratives about experiences of marginalization in education, employment and transportation. They understand that the social and economic marginalization of disabled people is due in large part to capitalist market forces. They argue that counter-narratives “destigmatize disability and give voice to those who have been marginalized for far too long” (199). Critics of this perspective within the disability rights movement and in the field of disability studies worry that the incorporation of individual experiences in scholarly discourse might detract from the principal focus on identifying systemic social barriers. However, the authors argue that Marx believed in the "importance of narratives or storytelling in situating the perspective and lived experiences of marginalized people as central to their understandings of the world" (6).

This study sheds light on barriers common in most Western nations. In education, the authors find a litany of obstacles that prevent people with disabilities from realizing their full potential. While some embrace advocacy to articulate their needs, others avoid exercising their rights, thereby making inadequate policies more likely. The authors also find overlapping physical and attitudinal barriers in the workplace, fuelled largely by the changing nature of work and a general perception of disabled people as a burden on society. As a result, many participants, including those who rejected a disability identity, were forced to develop work skills through volunteering usually within organizations that serve disabled people. The poor state of accessible transit was universally condemned and led most participants to a place of advocacy. Here again, however, some individuals embraced advocacy and found that it enhanced their disability identity while others simply found the process exhausting. Systemic barriers frustrated people with disabilities in their performance of traditional gender roles (for example, the accepted belief that men should always be in paid work and women are natural caregivers). This could serve variously to empower and/or to disrupt individuals in the pursuance of their life goals.

Analysis of these central themes leads Malhotra and Rowe to conclude there is a need to combine legal reform with direct action and grassroots organizing. They recognize the “limits of law as a tool for social transformation” (194), arguing that disabled people and their allies must promote practical solutions to overcoming these barriers while fundamentally rethinking the value of work and social engagement. The book demonstrates “that the disabled experience includes pain, exhaustion, and emotion. [It] cannot be reduced to structural barriers” (199).

In their analysis of individual experiences of socially constructed barriers, the authors demonstrate their support of Roberto Unger’s theory of democratic experimentalism, which posits that transformative social change is ultimately rooted in seemingly small policy shifts and legal reform to achieve desired outcomes. They also provide a series of recommendations including: more flexible assignment of Educational Assistants; facilitating seamless transitions to the workforce without economic penalty; accounting for the realities of impairment in a labour market defined by precarious employment; and commitment to improve access to driver’s licenses, public transit, paratransit and other shared ride systems.

This book will be of interest to Socialism and Democracy readers, in that it recognizes the social/economic determinants of marginalization and reflects the continued relevance of Marxist analysis. It uses unconventional research methods and explores the possibilities of reform and direct action. As lawyers and disability rights advocates, the authors promote a disability rights movement that is not content with incremental reform and procedural laxity, but is willing to mobilize direct action and seeks to emulate other radical organizations that employ such tactics. They might have situated their discussion more directly in the Canadian context. They refer extensively to developments in the US and the UK. I often wondered whether Canada was ever at the forefront of these changes or usually, as they suggest, lagging behind an international vanguard. On the whole, scholars and activists should find this book engaging and thought-provoking, with broadly applicable lessons for a global disability rights movement. Reviewed by Dustin Galer George Brown College Toronto dustin.galer@georgebrown.ca