Epilepsy, Ethics, Ethnicity: “Making and Unmaking” Elsie Lacks at Crownsville State Hospital in The Immortal Life of Henrietta Lacks

J Bioeth Inq. 2026 Feb 23. doi: 10.1007/s11673-025-10499-4. Online ahead of print.

ABSTRACT

Throughout African American medical history, Black epileptic women have been rendered unwillingly invisible, both as enslaved persons and as patients, and were often construed as defective, resistant, malingering, or disabled. A challenge therefore arises for bioethics scholarship when modern, white-dominated psychiatric institutions conceal the impairment of Black epileptic women within the malleable demarcation of disability. The article advances two distinct yet interrelated perspectives on the concept of disability. First, it theorizes the significance and appliedness of disability bioethics within the fluid intersection of race, gender, and epilepsy. Adopting a “binocular” approach that integrates the medical and social models of disability, it draws on theoretical insights ranging from Penny Rhodes to Sigrid Graumann to problematize the disability epistemology and cultural competence of white physicians in their treatment of impaired and disabled Black epileptic women. Second, the article examines how white physicians proselytize impairment into disability, thereby calling into question notions of “Black dignity.” Through a close reading of Rebecca Skloot’s The Immortal Life of Henrietta Lacks (2010), it investigates the spectral presence and narratively captured deformed face of Elsie Lacks, an impaired epileptic woman subjected to medical experimentation at Crownsville State Hospital. Drawing on the social model of disability articulated by Rosemarie Garland-Thomson, the article foregrounds the interlacing stereotypes, the severity of racism and ableism, and the perils of psychiatric treatment experienced by Black epileptic women.

PMID:41729394 | DOI:10.1007/s11673-025-10499-4