Alyse Keller, PhD, is an Assistant Professor of Communication Studies at CUNY Kingsborough in Brooklyn, where she teaches in the Department of Communications & Performing Arts. Her research looks at the intersection of performance and narrative and specifically focuses on her family’s experience with maternal multiple sclerosis.
When my mother became a prisoner in her own body, she also became a prisoner to the stories told by, and especially about her. Multiple Sclerosis (MS) marked my mother as aberrant. I saw how people communicated and treated her differently as her body became less able. I saw how chronic illness and disability permeated her perception of herself and my perception of her. I saw how I had become hostage to similar disabling narratives of illness and disability, but have continued to use storytelling to escape these prescriptive narratives. We use narratives to create our own way out; to regenerate.
Motherhood is often associated with ideas of maternal femininity, nurturing and authority. This is antithetical to the way our society frames women with disabilities. Mothers with disabilities or chronic illness, “can have a more complicated relationship to ideal motherhood because they are perceived either as asexual, and inappropriate to the role of motherhood, or conversely, are seen as at-risk” and in need of nurturing themselves (Malacrida, 2009, p. 99). Therefore, mothers with disabilities are forced to work against limiting social stereotypes.
As the daughter of someone who lives with MS, I understand the importance of loved ones creating and perpetuating regenerative narratives. Regenerating narratives can be used as a means of healing, but can also become “a vehicle of resistance and emancipation from cultural and familial identity scripts that govern body and identity” (Spry, 2001, p. 87). In this paper, I provide a narrative account of my relationship with my mother and her chronic illness, in order to regenerate the often degenerative and disabling narratives that mothers with disabilities and chronic illness are often subjected to.
Regenerative Narrative: Mothering New Stories of Disability and Illness