Development of Identity in Parents of Disabled Children

• In Event: Private Experiences with Public Consequences

Abstract

Political psychologists have long been interested in the ways in which people come to identify with a particular group and how this affects their attitudes toward government and political participation (Huddy 2003, 2013). Prior research has typically focused on demographic groups into which people are born – such as gender/sex, race, and ethnicity. We argue that an under-studied area of social and political identity formation is how a major life event (as opposed to an ascribed identity) stemming from a medical condition morphs into an identity that shapes subsequent political participation and political belief systems. In our case, we study how having a child born with a disability – in our study, Down syndrome (DS) – shapes identity development and politicization. Through in-depth interviews in an interpretive tradition (see Cramer 2016), we examine how parents who have a child born with DS understand their parental identity.

We find that while many parents of children with DS view themselves as unique or different than other parents, others see themselves as just another parent and do not develop a unique DS-focused identity. We note that identity formation in this group seems to peak when parents first get the diagnosis and then wane over time. We explore how parents characterize their group in terms of their interests, preferences, and grievances and how they see themselves not just as part of a smaller group of parents of children with DS, but a larger group of parents advocating for resources for other children. Through interviews across the state of Ohio, we additionally observe how local community groups or Down Syndrome Associations, which vary in size and resources, facilitate identity creation and politicization. Through this process, we find that interviewees often became more interested in politics, with their unique experience shaping views on disability and health policy.

Our project is unique in its exploration of identity by analyzing not only the creation of identity based on a group of which one is a member, but also identity that results from allyship, or a close connection with a group of which is not a member. Parents have their own interests as caregivers of disabled children and identity might form pertaining to these interests, such as respite care. In addition, they might form an identity politically based on the perceived injustices, need for government services, and interests of their disabled child, for example, by perceiving their child’s needs as their own. Thus, this project expands upon the role of social identity for allied out-group political action. We engage with normative questions about how well parents as an allied social identity groups advocate for disabled children.

In short, studying parents of children with Down syndrome adds a new dimension to current models of social and political identity by focusing on how people form new identities throughout their lifetime. Moreover, understanding parental identity and participation as allies is crucial to identifying the ways that this group can be both helpful and harmful to the disability community. In subsequent work, we explore how such identity precedes political participation, particularly in interacting with the school system.

Authors

• Monica C. Schneider, Miami University

• Timothy Herbert Callaghan, Boston University

• Kristin Kay Lunz Trujillo, University of South Carolina

• Steven M. Sylvester, Utah Valley University