From Disability Rights to the Rights of the Dying (and Back Again)

This article argues for civil rights for dying people. The creation of such rights should be understood as complementary to, but distinct from, existing initiatives to provide dying people with social benefits. A basis for rights for terminally ill people can be found in the disability rights movement. Through an ethnographic case study of two dying individuals, I argue that terminally ill people can be subjected to disability discrimination as it is understood within the dominant theoretical framework of disability rights: the social model of disability. Nevertheless, while disability rights provides a theoretical basis for understanding discrimination against people who are dying, existing U.S. disability rights legislation largely does not recognize, nor address this discrimination. For this reason, it is necessary to develop a separate set of rights of the dying. I conclude by arguing that such “dying rights” are a logical extension of disability rights, and will bring ancillary benefits to both disabled people and the disability rights movement itself. There is thus a strong foundation for a legal and political alliance between disability rights advocates and advocates for people who are dying.