Thursday 22 June 2023

"Since the event I've become half a person." The person in the disabled body.

In their paper, Agmon, Sa'ar and Araten-Bergman (2016) explore the experiences of newly diagnosed persons with disability. Since these individuals lived to adulthood as able bodied people before becoming disabled, their experiences may "offer a unique perspective on both normative and aberrant personhood".

Research on the disabled body is characterised by three assumptions: 1) Disability is a distressing and stigmatised experience that often leads to exclusion, 2) the disabled body is "a stopping point on a continuum of health", and 3) disability is a social construct which becomes more obvious when considering cross-cultural variations in approaches.

The authors come to the conclusion that visibly damaged bodies are assumed to entail cognitive disability. Doctors, for instance, tend to direct explanations to relatives and not to the individuals with disability despite them being present. their abilities are often underestimated, their independence is far from being nurtured reinforcing their exclusion. Persons with disability lose sexuality and gender, usual "codes of interaction between men and women" are disregarded by caregivers in the institution where the study was carried out. Individuals with disability are infatilised, at birthdays they are "allowed" to have some candies.

Since the event I’ve been half a person—half is saying too much: a living dead person. On one side you see how he’s dead. The tonus goes higher and higher, the hand is completely paralyzed, the leg is splinted. Dr. Zaiger told me on my last visit to Leowinstein, that if it doesn’t improve we’ll have to give injections to release the tonus.


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.

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- Agmon, M., Sa'ar, A., Araten-Bergman, T. (2016). The person in the disabled body: a perspective on culture and personhood from the margins. International Journal for Equity in health, 147, link
- photograph (protesting against the 1992 ITV Telethon, by People's History Museum) via

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