Parent-led Disability Rights Organizations and the Disability Rights Movement

• In Event: 1517 - Section on Disability and Society Refereed Roundtable Session
  In Refereed Roundtable 60min: Table 02. Politics, Organizations, and Social Change

Abstract

The role of parents of children with disabilities in disability rights activism has provoked contention among scholars. Some scholarship positions parents as vibrant, path-blazing advocates who fight selflessly for the rights and needs of their children (Blum 2007, 2015; Jones 2010). Other work characterizes parents as key barriers to the empowerment of people with disabilities, especially insofar as parents espouse models of disability rooted in tragedy, medical narratives, and paternalism (McGuire, 2016). Increasingly, scholarship has attempted to resist a polarized portrayal of parents as either martyrs or oppressors, and instead to explore the complexity of parents’ activism and their conceptualizations of disability rights.

Parent activists and parent-led organizations vary tremendously in their commitment to and understanding of disability rights. Even within any given organization, they often present contradictory messages and display organizational strategies that seem to promote a rights agenda while undercutting it in other ways.

Here, we build upon existing literature by considering disability rights activism as a field of social movement organizations and focusing on parent-led organizations and their relationship to organizations led by disabled activists. This field approach reveals the diversity of parent-led organizations, commonalities in the fault lines between organizations, and, ultimately, the factors which effect the likelihood of alliances between organizations led by parents and those led by people with disabilities.

We find that parent-led organizations vary considerably in their alignment with the core tenets of the disability rights movement and in their alliances with organizations led by people with disabilities. While all parent-led groups fall short in meeting the core ideals of the disability rights movement in some ways, some groups clearly strive to support and ally with organizations led by people with disabilities whereas others often act in direct opposition.

Authors

• Allison C. Carey, Shippensburg University

• Richard K. Scotch, University of Texas-Dallas

• Pamela Block, State University of New York-Stony Brook