Doing Disability Justice adds to a recent burst of scholarship on intellectual disability, including works such as The Faces of Intellectual Disability (Carlson, 2009), Acts of Conscience (Taylor, 2009), Theology and Down Syndrome (Yong, 2007), and On the Margins of Citizenship (Carey, 2009). Classic works in the field such as Trent's (1994) ,Inventing the Feeble Mind and Ferguson's (1994) Abandoned to Their Fate provided broad historical analyses largely focusing on the history of institutionalization, and works since then have begun to fill in historical detail and add alternative perspectives, thereby adding further nuance to our understanding of intellectual disability. In Doing Disability Justice, Larry A. Jones contributes a critical piece of the historical puzzle by examining the parents' movement. There has been very little systematic study of this movement; indeed, it often gets overlooked in a typical historical schema that moves from eugenics to the disability rights movement. However, the parents' movement played a vital role in shaping disability politics beginning in the mid-20th century, remains a considerable political force, and deserves the attention of scholars.
Jones' analysis focuses on the state, rather than national, level and examines the parents' movement in Washington. Washington's value as a case study is clear. In many ways, it was a leader in the field: It was the home of the first statewide family organization of parents with children with intellectual disabilities; its members gave the first speeches to the American Association on Mental Deficiency by persons identified as parents rather than professionals; and one of its members, Alan Sampson, became the first president of the national-level parents' organization, The Arc.1 In other ways, Washington lags behind, such as in deinstitutionalization. Jones notes that Washington is the “only state in the nation where you are more likely to leave the institution in a pine box than you are to be placed in the community” (p. 256). Thus, Washington presents a case with both successes and failures to be analyzed. In his analysis, Jones draws on organizational minutes, newsletters, news accounts, and other historical documents to provide a rich picture of the inner workings of the parents' movement.
To briefly summarize the book's key points, Jones documents the growth of the Children's Benevolence League (CBL), originally a small organization created among parents whose children resided at the State Custodial School (later Lakeland Village Residential Habilitation Center), into The Arc of Washington State, a chapter of a broader national movement. He argues that activists in Washington played a significant role in envisioning a national movement and coordinating activities toward it. Jones traces the ways in which frequent internal divisions resulted in the redefinition of The Arc's mission, activities, alliances, and membership over time, most recently into an organization that advocates the provision of services and supports in the community while also increasing its reliance on paid professional staff. In describing these changes, Jones argues that the story of The Arc cannot be reduced to the typical narrative of “from charity to rights.” In the narrative of charity to rights, early disability services are seen as rooted in models of charity, and their recipients as pitiable creatures in need of care whereas later disability services come to be seen as an integral component of civil and human rights and their participants as equal citizens deserving of the means for participation. Rather than this narrative, Jones claims that parents have long engaged in activism on the basis of justice rather than charity: “It turns out that families made political appeals on the grounds of justice from the 1930s” (p. 2). According to Jones, understandings of justice are not static, and as these understandings changed, The Arc responded in terms of its activities, alliances, and positions.
Jones' work offers several important contributions. The national parent organization, The Arc, was founded in 1950, and as such, most works date the national parents movement after World War II, noting that prior to the war parent organizations were disconnected from each other, tied to a specific institution, and/or focused on a single issue (e.g., encouraging special education in a specific locality or state). The CBL began in the 1930s much like other parent organizations of the day, as an organization connected with a specific institution. The founders sought to offer support to parents with institutionalized children and to improve the standard of living for residents of the State Custodial School (later Lakeland Village Residential Habilitation Center). Parents, though, quickly decided that improving the standard of living required more than gifts of games and televisions; it required political action to gain support for expanded services and research. As activities spread throughout the state, some CBL activists developed contacts across states and began to envision a national organization. According to Jones, the war interrupted momentum toward a national organization, rather than inspiring it. To make his point, Jones perhaps underemphasizes the impact of WWII in creating a social context conducive to change on a national scale, but he does convincingly show that initial discussions regarding a national movement began prior to the war.
Interestingly, Jones argues that Washington's early role as a leader played a causal role in some of its later problems. Jones recounts the contentious transformation from an organization committed to supporting the system of institutions to an organization explicitly opposed to institutionalization. Much of the system being dismantled today is the product of earlier “successes” by Arc activists, and some individuals who persist in defending institutions gained their political acumen through early participation in The Arc.
In discussing the numerous ideological splits experienced by The Arc as it grew and developed into its modern form, Jones draws on the helpful conceptualization of opinion leaders and laggers. Opinion leaders, he argues, tend to serve on state and/or national committees, stay abreast of national developments through reading disability journals, and see themselves as advocates involved in a larger movement. Laggers, on the other hand, focus on the success of their local programs and place their loyalty with the local players and programs. In this discussion, Jones shows that while, at times, the success of local programs and the direction of national advocacy went hand in hand, often they did not. Because of the continual evolution of best practices in disability services and supports, advocates must criticize and even dismantle programs that have become a stable part of the local service arrangement. For this reason, at the state and national-level The Arc stressed the importance of creating “demonstration projects,” projects that would be replicated or managed by entities other than The Arc so as to preserve it's roles as an innovator in the field and as a critic of existing programs. However, because both funding and control tend to come from the provision of direct services, many local Arc chapters provide and defend direct services regardless of their merits.
For Arc members, advocates more broadly, and historians, there is much additional information of interest. Jones discusses the important roles of finances, membership composition, and organizational structure in the successes and failures of The Arc of Washington State. For example, in 1976, The Arc of Washington's budget crisis led them to withdraw their membership from the national-level Arc whereas later successes in securing grants helped the organization rebound. Similarly, he describes the role of court cases in focusing The Arc's activities but also, at times, draining The Arc of resources and energy.
Although the historical detail makes for many interesting insights, the overall narrative, theoretical development, and explicitly drawn implications are weaker. The title, Doing Disability Justice, emerges from Jones' argument that parents have been concerned with “disability justice” from the outset of their movement and that they have responded to continually evolving notions of justice in their advocacy. Ideals of justice are certainly produced within a social context and therefore vary by time and place, and parents have long made claims based, in part, on justice. However, this conceptualization of “doing disability justice” seems a narrow and optimistic overall portrayal of the activities of parent activists who, at times, failed to put disability justice as their first priority. For example, the CBL twice defended institutional superintendents facing political challenges. Jones specifically notes that they defended superintendent Lash “somewhat cynically, since the League officers knew of ‘dirty linen’ at the school” (pp. 60–61). This stance is puzzling if their quest is focused on disability justice. In a later example, The Arc voted down initiatives intended to impose parent financial contributions toward the costs of institutional care, yet, in 1967, it approved a bill that required residents to pay for their care if they had personal assets over $1,000. Of this action, Jones notes, “The action was consistent with the interests of WARC: the association was primarily a parents' organization for Washington state” (p. 142). In the 1970s, Dr. Robert Aldrich addressed the WARC convention and raised concerns over the relationship between poverty, race, and disability, yet The Arc had little impetus within its ranks to confront these kinds of justice issues (p. 117). These examples indicate that, sometimes, parents were not centrally concerned with disability justice so much as with creating policies and services that met their interests. Jones offers readers little definition as to what constitutes justice or why it changes over time, so it is difficult to evaluate whether parents are acting in the name of justice or not. Moreover, perceptions of justice are not necessarily the same for everyone; ideas of justice are based, in part, on one's social position, and therefore the interests of people with disabilities and the interests of their parents do not always simply align (Carey, 2009). Thus, substituting “doing disability justice” for “from charity to rights” seems to fall short, and the history instead needs a more complex overarching narrative.
Doing Disability Justice also lacks a thorough discussion of the impact, or lack thereof, of the rise of self-advocacy. Jones states that The Arc of Washington was “quick to respond positively” to the self-advocacy movement (p. 246). For example, it added a self-advocate to its board membership and worked with People First on a major court case. There is little further discussion of self-advocacy. Has the addition of self-advocates changed the membership, organizational direction, and leadership structure of The Arc Has it created new tensions within the movement? For instance, the national self-advocacy organization Self-Advocates Becoming Empowered (SABE) opposes forms of service delivery that impose segregation and deny choices to people with disabilities. Has The Arc required local chapters to pursue integrated services? More fundamental perhaps, with the rise of the self-advocacy movement and the decline of parent participation, what is the role of The Arc in today's political picture? Is it still a “parents' organization”? Jones argues that parent participation has declined in part because of the success of early Arc initiatives and in part due to women's entry into the workforce and the decline of volunteerism. Yet there seem to be many parents' groups emerging outside of The Arc to meet functions that The Arc perhaps now eschews: offering parent support and promoting parents' interests. If The Arc is now primarily an advocacy organization for people with disabilities rather than primarily a parents' organization, is it needed now that SABE (People First on a state level) has emerged? To the extent that The Arc has more political clout and money than SABE, is it defeating its own mission? There is room for a rich analysis that Jones does not provide.
Throughout the book, Jones shies away from theoretical development, limiting both the explanatory power and wider implications of the book for scholars. He says, for example, “With the coming of peace and the end of gas rationing, the time was ripe for CBL leaders to reach out again to families nationwide—and because Americans are always forming associations—there is no need for any special theory about why parent associations popped up across the country and a national union was accomplished” (p. 48). Embedded in this very statement are theoretical assumptions about the role of networks and diffusion, resources, and political opportunities that he leaves undeveloped. Readers learn of the ebbs and flows of The Arc of Washington with specific details of court cases, financial constraints, leadership, and membership problems discussed, but there is little attempt to systematically assess the factors structuring these variations. Similarly, ideas of justice certainly transform, but Jones offers little information on the larger historical forces, such as the post World War II economic boom or the civil rights movement, driving these shifts.
Jones concludes with a postscript called “Lessons for Advocates,” which serves to make the key points of the book directly relevant to today's advocates. This chapter could easily be used in leadership and organization courses as well as by advocates. In general, the book is highly readable, and the lack of theory may make it more interesting to particular audiences, such as parents and activists. Academics, though, may yearn for a more academic conclusion, which would draw out the implications of this specific history for understandings of disability history, the disability rights movement, social movements in general, organizational development, justice, politics, and power. As it is, the potential of this history to inform a broad range of literatures is left largely untapped.
The Arc changed its name several times through its history from the National Association for Retarded Children to the National Association for Retarded Citizens to The Arc. For simplicity's sake, this review will use only its most recent name. Similarly, Washington's organization also changed its name many times from the Children's Benevolence League to the Washington Association for Retarded Children, then to the Washington Association for Retarded Citizens and then to The Arc of Washington State. Again, I will use its most recent name throughout this review and often shorten it to the Arc. To distinguish it from the national organization, when I speak of the national-level organization, I will identify it as the national organization.