Expanding the quality of life paradigm: Contributions from the field of disability studies

Abstract

This article considers the contributions from the field of Disability Studies to the conceptualization of Quality of Life (QOL) for people labelled with Intellectual Disability (ID). We suggest four elements from the field of Disability Studies that may be incorporated into an evolving QOL paradigm. The first element concerns the meaning of disability itself. Those working in contemporary Disability Studies identify societal obstacles and points of inaccessibility as sources of disablement while also recognizing the experience of difference. We suggest this understanding of disability as an interaction between a person and the social world/environment may be included more explicitly in QOL conceptualization. A responsive and adaptable definition of disability in the QOL paradigm is recommended. The second element is the recognition of relationality. The field of contemporary disability studies challenges the value of considering a person's disability as a solitary medical experience and questions the goals of independence, instead considering the value in interdependence and community. This could be included in the QOL paradigm by further emphasizing the importance of relationships and contributions of those labelled with ID. The third element is participatory design and epistemic justice, making space for people labelled with ID to contribute to research and direct the course of their own lives and supports. This element of self-determination is important to QOL but an increase in participatory research, service, and support design in the field is recommended. The final element is intersectionality, the idea that the experience of disability must be understood in the context of other points of identity or marginalization such as race, gender, and sexuality. We recommend that the QOL paradigm should allow for these additional elements to be included in further design and research in the field.