Chapter 6: Nothing about “Us” without Whom? (Re)Cognizing Alliance between Disabled People and Care Workers in Direct-funded Attendant Services

Purpose: This chapter problematizes the philosophical origins of direct funding models in a normative conception of independence that ignores and obscures the fundamentally relational nature of care work.

Approach: The study adopts a reflexive ethnographic methodological approach. In-depth, semistructured interviews were conducted with 19 participants variously involved with direct-funded attendant services (disabled “self-managers,” “attendant” employees, other members of self-managers’ support networks, and program staff). Additional data sources included the author's reflexive journaling and publicly available policy and program materials. The present analysis interrogated the impact of systemic constraints (i.e., limited funding) on the organization and management of attendant services.

Findings: The data illuminate how systemic constraints draw the interests of self-managers and attendants into tension, despite the affective relationality of the work they do together. The findings present four strategies self-managers adopt to maximize support hours, including: splitting shifts, strategic hiring, dynamic resource management, and supplementing remuneration. These findings suggest it is not vulnerability to each other that represents an ongoing concern for self-managers and attendants, so much as exploitation by a system that capitalizes on the oppression of both groups.

Implication/ Value: Disabled people and care workers have been and continue to be constructed as opposing interest groups. However, there is great potential in disabled people and care workers joining a united front to lobby for their common, often interrelated interests. Direct funding models are an important evolution of support services, but where they fail to attend to the relational nature of care work, we must continue to pursue more inclusive solutions.