From Advocacy to Activism: Families, Communities, and Collective Change

Janet Story Sauer, Priya Lalvani

Research output: Contribution to journalArticlepeer-review

8 Scopus citations


Although countries across the globe support the United Nations Convention on the Rights of Persons with Disabilities (2006), when faced with competing economic priorities, their policies and practices too often negatively impact children with disabilities and their families (Ferguson,). Current social and educational structures are implicated in inequitable services, particularly for those families from nondominant languages and minority racial and ethnic groups (McCall & Skrtic, Ong-Dean,). Recognizing the importance of contexts and power imbalances, we posit that the broader communities in which families live and that determine the opportunities they are afforded, should be explicitly addressed when evaluating a family's quality of life. This article provides an analysis of family quality of life in the context of parents’ struggle to access equitable education for their children with disabilities, and suggests that the Quality of Life (QoL) conceptual framework (Brown, Schalock, & Brown,), having already expanded to include the individual to the family unit, be further extended to engage the community. To illustrate, we describe two community-based projects aimed at moving family involvement in special education away from a model of individual advocacy, situated within western ethnocentric organizational structures that rely on sociocultural capital, to grassroots collective activism.

Original languageEnglish
Pages (from-to)51-58
Number of pages8
JournalJournal of Policy and Practice in Intellectual Disabilities
Issue number1
StatePublished - 1 Mar 2017


  • disability studies
  • family quality of life
  • intellectual disability
  • parents of children with disabilities
  • special education


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