American Culture Studies Ph.D. Dissertations

"I Wish to Be, I Wish to Give, I Wish to Go, I Wish to Meet": Make-A-Wish and the Construction of Disability, 1980-Present

Date of Award

2022

Document Type

Dissertation

Degree Name

Doctor of Philosophy (Ph.D.)

Department

American Culture Studies

First Advisor

Sarah Rainey-Smithback (Advisor)

Second Advisor

Amelia Carr (Other)

Third Advisor

William Albertini (Committee Member)

Fourth Advisor

Rebecca Kinney (Committee Member)

Abstract

This dissertation posits that the Make-A-Wish Foundation of America (Make-A-Wish) is a site of knowledge about contemporary constructions of disability. Since its founding in 1980, Make-A-Wish has built a notable reputation as a charity that grants once-in-a-lifetime wishes to children with critical illnesses. Using a disability studies approach that contextualizes Make-A-Wish’s charity model of disability, this project builds on the work of scholars such as Alison Kafer, Paul Longmore, and Jasbir Puar to think through the various elements of the wish-granting organization’s structure, premise, and representational strategies. Further, the project explicates the ways that Make-A-Wish perpetuates neoliberal concepts of private enterprise and personal responsibility as the organization reinforces Talcott Parson’s concept of the “sick role” and isolates its grantees from a larger disability community. In addition to studying the main themes that appear across Make-A-Wish’s official platforms, this dissertation also investigates the implications of two of the elements that ostensibly set Make-A-Wish apart from other organizations: its wish-granting model and its definitions of wish eligibility. Specifically, the organization’s reproduction of social conceptions of leisure and necropolitics exemplify the complex ways Make-A-Wish interacts with dominant understandings of disability. In order to further complicate the representations of disability Make-A-Wish promotes, this study pairs a content analysis of Make-A-Wish materials with the perspectives of individuals who have personal experiences with the organization—either as wish grantees, grantee family members, and/or donors. I conducted interviews with these individuals to gather valuable insights into the organization’s work and to nuance the analysis the project presents. Finally, I weave my own experiences with the organization as the sister of a Make-A-Wish grantee through this project, both to establish my researcher standpoint and to further elucidate the many ways Make-A-Wish creates charity experiences for the individuals it ostensibly serves and the social environment in which they live.

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