The Parental Experience of Mothers with Children Who Have Developmental Disabilities: Qualitative Reflections on Marginalization and Resiliencey

Abstract

This chapter explores the parental experiences of 21 mothers of young and/or adult children who have been diagnosed with developmental disabilities (DD). Specific attention is paid to mothers’ reflections on marginalization, stress, and resiliency. Intersectionality of marginalization was explored with a select number of participants who identified with minority racial groups, with the LGBTQ community, and/or as a single or young mother. Data were collected via semi-structured interviews and analyzed using the constant comparative method. Eighteen mothers reported experiencing elevated levels of stress specifically related to challenges associated with DD; the need for greater investments of time and money was emphasized. However, nearly every participant highlighted stories of resilience and acclimation to these challenges associated with raising a child with DD. Thirteen mothers overtly discussed experiences of discrimination and marginalization. Some of these scenarios included being stared at or criticized in public, being excluded from social events, and facing discrimination within school settings. Select participants from marginalized backgrounds (being as a young parent, or as Black, single, lesbian, bisexual, and/or transgender) provided insight into how layers of marginalization negatively impacted their parental experiences. These personal accounts provide additional evidence that mothers of children with DD experience courtesy stigma. In addition, they provide a holistic illustration of motherhood experiences that does not center on only negative or positive aspects. Finally, the reports of mothers who identified with multiple marginalized identities strengthen the call for additional empirical focus on intersectionality as it concerns mothers of children with DD.

Citation

Stober, K. and Franzese, A. (2018), "The Parental Experience of Mothers with Children Who Have Developmental Disabilities: Qualitative Reflections on Marginalization and Resiliencey", Taylor, T. and Bloch, K. (Ed.) Marginalized Mothers, Mothering from the Margins (Advances in Gender Research, Vol. 25), Emerald Publishing Limited, Leeds, pp. 73-88. https://doi.org/10.1108/S1529-212620180000025005