After Disability Rights: Securing a Disabled Future in Ableist Times

Abstract

This thesis is about the ongoing struggle for disability equality after the entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD), the first legally binding treaty on disability rights. Specifically, it is concerned with disabled people’s right to live and remain in the world in the face of ableist medical and scientific practices, which challenge the notion that disabled lives are equal to nondisabled lives and undermine acceptance of disabled people as part of human diversity. Even though the CRPD provides a comprehensive account of disability rights, it does not address bioethical matters and the problem of ableism in medical and scientific practice has been largely understudied in disability legal scholarship. This thesis contributes to filling this gap by critically examining the regulation of disability at the beginning and end of life from a disability legal studies perspective. It does this by applying the human rights model of disability, reflected in the CRPD, to examine representative laws largely from the US, Canada, and the UK, in relation to: disability-selective abortion, assisted reproduction, medically assisted dying, treatment refusals and requests, access to controlled substances for palliative care, and access to experimental treatment. The thesis argues that the regulation of disability undermines the human rights model of disability when laws confer greater opportunities for the birth and continued survival of the nondisabled. In doing so, the thesis stages an intervention at the intersection of disability studies, bioethics, and human rights law. The thesis concludes that disability inequality persists as a continuing problem because the same disabling attitudes about disabled people, predating the CRPD, have remained largely undisturbed in the regulation of disability at the beginning and end of life.