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Abstract
Disability, as a social construct, is embedded in a wide range of social systems. Beginning from the premise that different laws and institutions define disability in divergent, often contradictory ways, this dissertation asks how individuals and organizations in the Chicago metropolitan area experience, navigate, and contest the meanings of disability and the policies through which these meanings are institutionalized. I refer to the nexus of social and political structures through which disability is defined as disabled citizenship, drawing on T. H. Marshall’s conceptualization of citizenship as a matter of social belonging and as built on interconnected categories of rights. I argue that contemporary disabled citizenship is the product of a process of policy sedimentation, whereby policies crafted in different eras, reflecting different approaches to disability, sit unevenly on top of one another. This contributes to an unstable and inherently contradictory construct that is bound up with tensions between disabled people’s civil, political, and social rights. The empirical chapters of the dissertation are structured around a comparative case study of four manifestations of disabled citizenship: 1) labor market participation with rights protections through the ADA; 2) income support through Social Security Disability Insurance and Supplemental Security Income; 3) institutionalization in putatively therapeutic settings such as nursing homes; and 4) activism by disabled people seeking to expand and transform the boundaries of citizenship. Many of my informants have experienced more than one of these policy regimes, creating tensions between conflicting policy logics. The fourth area of focus is clearly distinct from the other three, and its inclusion reflects my argument that disabled citizenship is fundamentally contested. I argue that disabled people, facing the uneven terrain created by policy sedimentation, engage in a process of policy navigation from below, which I define as their active labor to secure accommodations, benefits, or services while also addressing their material needs. For disabled workers, this can mean requesting disability accommodations, maintaining relationships with bosses and supervisors, and ensuring that one can maintain health insurance and, in some cases, eligibility for other benefits. In the case of SSI and SSDI beneficiaries, the process involves interpreting and understanding program rules, navigating conflicting policy logics, and at times performing paid work where possible. For residents of Medicaid-funded nursing homes, it can mean keeping one’s head down and maintaining friendly relations with overworked staff, pursuing the complex process of transitioning out of a facility, and advocating for better treatment. For disabled activists, policy navigation involves maintaining the external presentation of a campaign as a sympathetic appeal to nondisabled decision-makers who may view them through an ableist lens, while also sustaining internal commitment and creating space for defiant expression. While each chapter focuses on one policy arena, navigational work often takes place often across policy systems, reflecting the fragmented character of disabled citizenship. By illuminating these processes of policy navigation from below, I shed light on overlooked forms of labor that disabled people must perform in order to engage with systems of work, social provision, care, and political action.