Parenting during a Pandemic: Mothers and Disabled Children in Aotearoa/New Zealand—A Hidden Minority

Abstract

Every country has its own COVID-19 pandemic story; similarly, every family has their own experiences of lockdowns, isolation, illness, death, struggles, and resiliency related to the pandemic. Although myriad narratives appear about these familial and societal experiences, few explore those of mothers of disabled children; these have been largely invisible, and as a result, this minority group and their needs have failed to be addressed by those who make decisions and plan for public health crises and for the subsequent recovery. Autoethnography, a qualitative method that coalesces personal experience and research literature to advance sociological understanding, underpins this exploration. The authors are New Zealand/Aotearoa mothers of disabled children. Our approach employs autoethnographic reflection about our pandemic experiences to create mean-ing, forge identities, and explore power structures. Connections of our family stories enable the creation of an understanding of what has happened in our communities. The authors’ reflections on their pandemic experiences are woven together with stories of how governments, schools, public health organizations, disability organizations, healthcare providers and communities directed us and responded to or failed to address our needs. We have identified five interwoven themes throughout our stories: anxiety, invisibility, devalued lives, coping, and advocacy. Together, as an outcome of the autoethnographic study of our pandemic experiences, we offer ideas for survival to pass on to mothers for future disasters and crises. Furthermore, we have developed recommendations for organizations and others living with disability