The person in the disabled body: a perspective on culture and personhood from the margins

Abstract

Background

Persons with disabilities (PWD) are one of the most marginalized groups in Western societies. These inequalities are manifested through various disadvantages in the psychosocial, cultural, and economic domains. Inspired by the World Health Organization's holistic conceptualization of disability, the present study examines the relation between the body and personhood in Israeli culture, through cases of newly diagnosed adults with disability.

Method

Participant observation at a rehabilitation daycare center was carried out for a period of two years. The analysis is based on field notes recorded during these observations, including interviews with individuals with disabilities, their family members, and service providers.

Results

The analysis reveals the agonizing experience of individuals who have become disabled in adulthood, who undergo symbolic diminution and social exclusion after their former acceptance as whole and normative persons. This ongoing multifaceted process includes infantilization, denial of their sexuality/sensuality, transgression of gender boundaries, and their construction as categorically different from the "healthy" people around them. At the same time, the analysis also demonstrates the ways in which daily routine at the daycare center also complicates the normative healthy-disabled binary, indicating a continuum on which attendees may attempt to reposition themselves.

Conclusions

This paper aims to make a dual contribution. We draw on anthropological understandings of“person” as a holistic category to resurrect the personhood of individuals with disabilities, as a correction tothe overwhelming tendency to reduce their humanity to their physical injury. We likewise reverse theanalytical gaze by using these individuals' experiences to understand the normative, culture-bound perception of “healthy” persons. We thus highlight Israeli culture's conditioning of normative personhood on having a perfect body, and its concomitant construction of individuals with physical disabilities as lesser persons. By opting to bring back the person into the disabled body, we aim to facilitate a less stigmatized outlook on disability and to create an opportunity for caregivers, researchers, and healthcare professionals to view disabled persons as whole and complex human beings.