Development and Consequences of Identity in Parents of Disabled Children

• In Event: Pushing Barriers: The Place of Disability in Politics and Political Science Mini-Conference: Linking Attitudes towards Disability, Disability Policy and Institutions

Abstract

Political scientists have long been interested in how people identify with a particular group and how this identity affects their attitudes toward government and political participation. Prior research in this area has typically focused on demographic groups into which people are born – such as gender/sex, race, and ethnicity. We argue that an under-explored area of identity formation and its impact is how a life event (as opposed to an ascribed identity) morphs into a group identity that shapes participation and political belief systems. In our case, we study the development and consequences of identity in parents of children with a disability, namely Down syndrome (DS). Through multiple focus groups and interviews, we evaluate a hypothesis that external context (in particular, local community groups or Down Syndrome Associations, which vary in size and resources) helps facilitate collective identity politicization, which, in turn, promotes political participation regarding issues related to the disability community.

Our project is unique in its exploration of identity by analyzing not only how major life events impact politicized identity but also identity that results from allyship or a close connection with a group of which one is not a member. Parents, in this instance, are typically not disabled themselves, but come to identify with the disability community through their children. They might participate politically based on the perceived injustices, needs, and interests of their disabled child, for example, by advocating for better education and health care services. Thus, this project expands upon the role that social identity can play not just with in-group political action but also for allied out-group political action – a widely understudied area of politicized social identities. This project also engages with normative questions about how well parents as an allied social identity group advocate for disabled children.

Finally, identity formation among these parents occurs in a context where government policies require at least some participation from the parent. Specifically, parents are required to participate in yearly Individualized Education Plan (IEP) meeting(s) in which parents must, at a minimum, sign for the services their child receives. We conceptualize engagement in the yearly IEP meeting(s) as a form of political participation. Parents have wide latitude and variation in how they accept, push back, and interact with street-level bureaucrats on the child’s IEP team, of which the parent is a legally-defined equal member. As such, we anticipate that identity in tandem with external context (via community groups) will predict active participation in the IEP process and resistance against the school district.

In short, studying parents of children with Down syndrome complicates current models of the relationship between identity, politicized identity, and political participation by examining a group where government processes and community groups help form identity at the same time that political participation necessarily occurs. Moreover, understanding parental identity and participation as allies is crucial to identifying how this group can be both helpful and harmful to the disability community.

Authors

• Timothy Herbert Callaghan, Boston University

• Monica C. Schneider, Miami University

• Steven M. Sylvester, Utah Valley University

• Kristin Kay Lunz Trujillo, University of South Carolina