Activating disability care: the formation of collective disability care networks in China’s COVID-19 outbreak

Abstract

This study examines the evolution and development of two collective care networks formed by and for people with disabilities and their family members during the COVID-19 outbreak in China. Inspired by the feminist disability studies approach to the ethics of care, I traced the interdependent moment in which people with disabilities, their family members, and non-disabled allies were connected in response to the tragic death of a 16-year-old teenager with severe cerebral palsy for the lack of care. This tragedy painfully exemplified the vulnerability of families of disabled people, as well as a care system that disproportionally allocated the care responsibility on the family; it also turned into emotional power that nurtured the emergence of two care networks that provide collective support to families of disabled people, organize the community, as well as generate public, political appeals of policies and legislation surrounding disability care. Points of interest This article pays attention to two collective care networks formed by and for people with disabilities and their family members following the tragic death of a young man with severe disabilities for the lack of care in China’s COVID-19 outbreak. The collective care networks provided collective, social support to families of disabled people, organized the community, as well as generated public, political appeals of policies and legislation surrounding disability care. This article calls for the value of interdependence and the social, collective responsibility of disability care. This article calls for an emancipatory research agenda in Disability Studies to include the study of care through a cross-cultural perspective, and vice versa.