Medical Misfits: Extending The Purview of Healthcare for Black Disabled People Through Community-Centered Disability & Health-Focused Organizations

Abstract

Disability circulates through and informs the socio-politico-relational realms that we are placed into or become part of. Beginning with the Transatlantic slave trade, colonialism trafficked unsubstantiated claims of biological and intellectual deficiencies amongst Black enslaved people to the Americas, to justify the colonial apparatus. As a result, Black Disability Studies scholars affirm that categorizations of race and disability have become co-constituted and nearly inseparable. In this thesis, I seek to analyze the intersections of race and disability, foregrounded by colonial histories and legacies, to implicate healthcare systems’ role in the lives of Black disabled people. Black (disabled) people have had a tenuous and callous relationship with medical institutions, wrought with unethical experimentations and procedures, biological determinisms, and blatant disregard as patients. I conducted my fieldwork at Advocating for COGI Culture (AFTCC), an annual event hosted by The Color of Gastrointestinal Illnesses (COGI), an organization serving those with chronic GI illnesses. I will present qualitative Rapid Ethnographic research specified through Focused Ethnography, employing field site visits, field observations, and semi-structured interviews with COGI members. This thesis argues that colonialism offers insight into modern interpretations of disability and race; community-based health organizations and health service providers, like COGI, focused on Black people promote healthcare that differs from a highly medicalized and clinical perception of disability as a colonial aftermath; and, there may be generative and renewed translations about disability for Black people in spaces like COGI. My findings conclude that COGI, as an organization and its membership, endorse disability expertise, health promotion, and health education of chronic digestive illnesses, even though some do not identify with disability categorization. And, disability labels are not necessarily indexed as such; rather, it is filed under more disease or illness-specific descriptions by members due to the intense historical stigmatization of Black people’s bodies.