Sarah L. Bosha (she/her) is an international human rights lawyer whose work focuses on advancing disability, gender and the right to health. Prior to joining Georgetown Law, Bosha worked as a Global Health Research Specialist at the University of Notre Dame. She worked with victims of Yahya Jammeh’s fraudulent HIV cure in The Gambia to obtain justice for health rights violations. She also presented a petition before the Inter-American Commission on Human & Peoples Rights challenging Jamaica’s homophobic Offences Against the Person Act. Bosha has written extensively on the rights of persons with albinism and appeared as amicus curiae before the African Court of Human and Peoples Rights, in a case against the government of Tanzania for rights violations against persons with albinism. Bosha holds an LLBS (Honours) degree from the University of Zimbabwe and an LL.M. in International Human Rights Law from the University of Notre Dame.
Project: Exploring Barriers and Opportunities in Healthcare Access for Women with in Albinism in the United States
Women with disabilities face barriers in accessing healthcare and participating fully in public life due to the dominance of ableist structures and systems. Persons with albinism are a distinct group within the broader disability community whose health rights issues remain understudied. Albinism is a relatively rare, non-contagious genetic condition that results in a deficit in melanin in the skin and eyes, a photoprotective pigment that protects humans from harmful ultraviolet radiation. This results in a lack of pigmentation in hair, skin and eyes, and a heightened vulnerability to skin malignancies and skin cancer, and vision impairments. Generally, women’s experiences in utilizing healthcare are understudied, particularly those of women with disabilities such as albinism. This research will examine how gendered expectations, bias in healthcare systems, and the invisibility of women with disabilities shape healthcare experiences for women with albinism. It explores how women with albinism experience barriers to healthcare access in the United States, and how gender, disability, and skin color intersect to shape discrimination, stigma, and interactions with healthcare providers. Building on existing disability rights and healthcare scholarship, the research seeks to contribute new qualitative research on the lived experiences of women with albinism with health services in the United States. Utilizing a storytelling circles approach, the project will convene women with albinism to explore and document their experiences with discrimination, stigma, and barriers to accessing healthcare services. In addition, the research will highlight positive experiences within healthcare to extract best practices. Adopting an intersectional framework, the research will add to the corpus of intersectional feminist scholarship by exploring how the intersecting identities of gender, disability, and skin color shape experiences of discrimination and exclusion in healthcare settings. The findings will contribute to advocacy efforts for more disability-inclusive and gender-responsive healthcare practice and policy in the United States.