What WE Have Done: An Oral History of the Disability Rights Movement

By David Pettinicchio

What WE Have Done: An Oral History of the Disability Rights Movement, by Fred Pelka. Amherst and Boston: UMass Press, 2002.

Fred Pelka’s recent book, What WE Have Done: An Oral History of the Disability Rights Movement, is not a traditional scholarly text which analyzes the dynamics of the disability rights movement. The book is based on in-depth interviews mostly with key activists from three sources: Pelka’s own interviews, interviews recorded by the group Disability Rights Education and Defense Fund (DREDF), and oral histories from the Oral History Office of the Bancroft Library at UC Berkeley. The book is structured around key events and places in the disability rights struggle, predominantly focusing on the politics of the Americans with Disabilities Act (although the interviews and accounts capture a lengthy historical period as many of those interviewed provide recollections of the past going back as far as the 1950s). Admittedly in his preface, Pelka claims that the chapters and interviews are not always presented in chronological order but rather tend to move back and forth through time in order to capture the thoughts of activists about a specific event, organization or policy. Pelka’s voice is mostly present in his preface and to a lesser extent, in his introductory chapter where there is a blend of analysis and interviews. His first chapter provides a fairly straightforward and traditional historical background of the disability struggle which is found in other texts that trace the history of disability rights and the disability rights movement. The rest of the book is largely structured around the oral history he presents.

Although Pelka himself has studied the disability rights movement as a freelance writer and researcher, his book is not framed around any particular sociological analysis of the narrative and oral history he includes in his book. Rather, the narratives appear to be left largely untouched and the book truly is a story of disability rights as told by those involved in the movement. The book title alludes to two related points. First, it makes a claim about the nature of the organization of the book itself – that this is not an account from the perspective of the author, but one from the actual participants of the disability rights movement. Second, it suggests a particular perspective in approaching the subject of disability rights that emphasizes the role of those who are both constituents and beneficiaries of collective action. That is, the theme of the book is congruent with the slogan “Nothing about us, without us” which is the opening statement of Pelka’s preface.  This is an important lens from which to view mobilization particularly as it is related to political outcomes (such as for instance, the ADA) because it places a great deal of emphasis on the role of grassroots activism above other considerations (such as political opportunities, insider sympathies, political entrepreneurship, and the fact that persons with disabilities had historically been designated as a constituency deserving of political attention, albeit not necessarily as one deserving of rights).

I cannot help but review this book given my research focus on disability rights in America. My dissertation focuses on the key role of political entrepreneurship and institutional activism in bringing about political change and how the government, borrowing from Ann Costain’s book, invited disability rebellion. That is, that the disability rights movement mostly emerged after the government introduced the Rehabilitation Act. While Pelka’s presentation of the oral histories sheds important light on the road leading up to the ADA as told by activists, it fails to consider the role of entrepreneurs in the government who, early on, played a pivotal role in shifting politics away from rehabilitation and towards rights. This is not an argument made uniquely by my work, but one noted in various texts including Scotch’s From Good Will to Civil Rights (2001, 2^nd edition), Katzmann’s (1986) work on transportation policy and disability, and Skrentny’s  account of disability rights in his 2002 book The Minority Rights Revolution.  All three accounts suggest that the movement for disability rights began in the government rather than streets. This does not mean that so-called “outsiders” did not matter, but rather, that they had close ties to legislators and their aids (for instance some notable movement figures, like Judith Heumann, served as interns for legislative aids).  It is interesting that Pelka frames the book as an oral history leading up to the ADA because the theme of “Not about us, without us” applies more to the years immediately preceding the passage of the ADA and much less to the emergence of disability rights policy in the late 60s and early 70s.  When Pelka does address political entrepreneurship, he tends to refer to it as “behind the scenes work” and juxtaposes that to “activism.” A growing body of work has in essence called into question the outside-insider split, particularly with such concepts as “institutional activists.” Ironically, the rich narrative included in the book makes countless references to the link between “outside” and “inside” activism. Indeed, activists’ accounts present a complex dynamic between political elites and grassroots mobilization.

This book is of interest to anyone who studies social movements, collective action, and activism, as well as those interested more specifically in disability rights. The accounts provided in the book shed important light on emotions, perceptions, and motivations behind action. Pelka has arranged the narrative such that is is easy  for the reader to draw important parallels with other civil rights struggles.  The book provides a rich source of qualitative data that sheds a great deal of light on possible individual-level mechanisms that underlie broader social movement processes. As someone who uses longitudinal, quantitative data to address questions of social movement emergence, organizational dynamics and policy responses, I found Pelka’s book invaluable in helping ground the broader claims and findings of my work within a meaningful micro-level framework.