The disability-rights perspective within the bioethics agenda.

Abstract

The life perspectives of persons with disabilities have been neglected in many countries and particularly in lower- and middle-income countries that have fewer resources to adequately address the societal needs of these persons. Bioethics purports normative standards for the way in which we treat with others, and the virtue of care should be at the heart of everyday life. Human rights are norms that aspire to protect all persons everywhere. Within this milieu, persons with disabilities who make up a significant portion of all societies worldwide meet many social barriers that inhibit their quality of life and leave them greatly disadvantaged in comparison to able-bodied persons. This article focuses on the notion of quality of life, the presumed perspectives of biomedicine and bioethics on disability, the neglect of the lived experience of persons with disabilities, and the discrimination underlying the struggle for equal rights and opportunities for persons with disability. It argues for equal access to social and beneficial medical interventions for persons with disabilities; that persons with disabilities should be seen as different but equal; that their contributions to societal deliberations would enhance the richness of thought, views, narratives and perspectives; and that society should stop using the term disability and use instead the less value-laden term anomaly. Finally, it recommends educational campaigns to change negative attitudes towards persons with predicaments or anomalies, the respecting of human diversity, collaboration between upper-income and lower- and middle-income countries to develop strategies that seek to change negative attitudes towards persons with anomalies, and the inclusion worldwide of all these matters as a part of a bioethics agenda that advocates for respecting the human rights of persons with anomalies.