The Four Walls of My Freedom by Donna Thomson

Author:Donna Thomson
Language: eng
Format: epub
Publisher: House of Anansi Press Inc.
Published: 2014-01-17T15:54:00+00:00

CHAPTER FOURTEEN

Capable Me

Mothering a child with medical needs is a very public but lonely endeavour. Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighbourhood mother–toddler groups for young children with severe disabilities. Since Nicholas’ birth, there have been times when I felt confident about my mothering because I was rested, healthy and enjoyed support in my nurturing role. There were other times when I felt desperately inadequate in meeting the needs of my family: my own physical and mental health failed and I became overwhelmed, exhausted and hopeless. The capabilities of mothering a special needs child, which I will argue are necessary if families like mine are to survive, are 1) the capability to be a good mother; 2) the capability to be supported in that mothering role by the state (formal support) as well as the community (informal support); and 3) the ability to have a roughly normal trajectory of caring in years, including some hope of a retirement from caring. These three capabilities I believe are matters not just of ethics, but of justice. A fair trajectory of my caring years should not include me changing Nicholas’ diapers when he is thirty-five and I am seventy. A just and good society should involve a public/private partnership to support its most vulnerable citizens. It is exactly our society’s status quo of dysfunctional push-pull between public and private responsibility for people with disabilities that has painted families, especially mothers, into a bleak corner. Using Sen’s Capability Approach as a basis for evaluating my own experience, it is clear that an overhaul of the current arrangements among families like mine, communities and governments is required.

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