Theses Master's

Empowering D/deaf Children: Narrative Medicine and Rights Based Claims

Goebelbecker, Carina

The human rights of D/deaf children in America are situated at the intersection of disability justice and children’s rights. When receiving medical care, D/deaf children face challenges specific to their D/deafhood in addition to other intersecting identities. Narrative Medicine is an approach within the medical exchange that has been used to facilitate collaboration between doctor and patient.

This research investigates the question: does Narrative Medicine facilitate rights claims? The population of D/deaf children was used to explore if and how the Narrative Medicine approach has been used in a human rights context. Instrumental to the study design were semi-structured, qualitative, ethnographic interviews with a diverse group of people. Subjects came from a variety of professions with the intention to gain an accurate representation of medical care of D/deaf children from many perspectives. Interview subjects responded to questions about narrative, medical care, the right to health, communication, and empowerment.

The information gathered in the interviews revealed that Narrative Medicine has been used to assist patients in their claim of the right to health through empowerment and holistic care. There is opportunity for the Narrative Medicine approach to be used further in the care of D/deaf children, who face many barriers in their care. Language acquisition, a health concern central to the care of D/deaf children, plays a key factor in a D/deaf child’s ability to express narrative and advocate for themselves. Access to information regarding the rights of D/deaf children is essential to advocacy with and for this population.

The research ends with recommendations on how to better improve the medical exchange for D/deaf children, incorporating Narrative Medicine approaches. D/deaf children are entitled to the right to health and dignity in the fullest extent, situated in environments of care where they can thrive.


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More About This Work

Academic Units
Institute for the Study of Human Rights
Thesis Advisors
Hegele, Arden
M.A., Columbia University
Published Here
August 3, 2022