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My Mom Was My Left Arm
The lived experience of ableism for girls with Spina Bifida
Cheryl van Daalen-Smith
Associate Professor, School of Nursing, Faculty of Health, York University, Toronto ON, Canada
Abstract
In many cultures, people deemed different, deficient or of lesser value are socially marginalized, disempowered, devalued and face innumerable barriers to health and quality of life. Persons deemed disabled are one such group. Through oppression, discrimination, and constant degradation, marginalized groups are denied the basic human right of dignity. For five girls with Spina Bifida, the experience of societal ableism, i.e. the belief that being able bodied is normal, eroded their sense of self worth, impinged upon their human rights, and isolated them in their own degradation - until they came together and spoke.
My Mom Was My Left Arm illuminates the impact of ableism on the health and well-being of girls living with Spina Bifida. Several focus groups with five girls concerning their lives, anger and health yielded compelling reasons for today's contemporary nurse to explicitly practice from a social justice framework. In being deemed other, less than and viewed as their disability, the young women interviewed believed they had never reached their actual life potential. The relationship between health and ableist discrimination as lived by young women with Spina Bifida will be explored. The paper will close with nursing's ethical imperative to advocate for social justice, equity, fairness and dignity.
Keywords
girls, Spina Bifida, anger, ableism, social justice
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