Beyond Complicity or Allyship: Toward a New Understanding of Caregivers

Abstract

The role of caregivers and issues of parenting are controversial in research on disability. While appreciating the historical and political reasons to critique power relations in care systems and care relations, we argue that it is important to consider parents' and other caregivers' positions. A reconsideration provides insights into pervasive effects of ableism defining not only the individual child but parents and other relatives as well. We draw from extensive research on couples parenting a child with disability in Germany (Tröndle, 2022a). This study seeks to understand how parents of a child with disability cannot avoid understanding themselves as “special parents.” Through analyzing shared life stories of couples and individual biographies, the study reconstructs how identities evolve differently depending on their work-sharing arrangements. Based on our findings, the couples experience difficulties in maintaining dual employment arrangements. They become “unable” to step outside of the logic of welfare and health provision and structures of the labor market. Couples begin to explain their situation and the discrimination they experience by reflecting themselves as “special parents.” Heteronormative and ableist expectations hinder them in articulating resistance and gaining agency as allies of their children, facilitating positions of complicity. We argue that the approach suggested by this study – namely including the ambiguous situation of caregivers in Disability Studies – can encourage other researchers to consider othering and ableism of and by caregivers.

Citation

Tröndle, J., Pfahl, L. and Traue, B. (2024), "Beyond Complicity or Allyship: Toward a New Understanding of Caregivers", Ciciurkaite, G. and Brown, R.L. (Ed.) Disability and the Changing Contexts of Family and Personal Relationships (Research in Social Science and Disability, Vol. 15), Emerald Publishing Limited, Leeds, pp. 185-201. https://doi.org/10.1108/S1479-354720240000015012