3. What is the Good Life and How Can I Provide It For My Child For His Whole Life?
Like Riley-Hall’s and Gilman’s books, Donna Thomson‘s The Four Walls of My Freedom (McArthur & Company 2010) is a memoir by a mother who, confronting the unexpected experience of raising a child with disabilities — her son Nicholas, born in 1988, has cerebral palsy and multiple disabilities — is transformed and sees the world in a new light. Seeking to write something besides “another piece of misery porn or worse still, inspirational lit” (p. 33), Thomson explores how persons with disabilities can live a “decent and valued life”; can lead a good life.
This is a question that my husband Jim and I consider central as Charlie, who will need lifelong care, grows up. Thomson’s husband, James Wright, is former High Commissioner of Canada to the UK and she notes that the “peripatetic lifestyle of diplomacy” (p. 33) taught her much about what it is to live with “limited freedoms” and the “value of resilience and creativity when faced with oppression.” Thomson draws on the ideas of human freedom and potential of Nobel Prize-winning economist Amartya Sen and, specifically, his “Capability Approach,”
“that social arrangements should expand people’s capabilities, or their freedom to promote whatever activities and lifestyle they value” (p. 35)
Thomson’s concern is not simply “what is a good life” for an individual with disabilities, but how can such be provided (p. 46)?
To this end, interspersed with her advocating for Nick’s education in Canada and the UK and caring for him through hospitalizations and surgeries, Thomson describes how she and other parents developed the PLAN (Planned Lifetime Advocacy Networks) model to support children with disabilities. “Caring relationships” with other people are key as is a place to live and “the ability to make a contribution to society” (p. 51).
But Thomson truly takes the long view and considers how to fund, through government policies and programs and family’s private contributions, such a life (discussed at length in ch. 17, “Good Ideas and Practical Solutions”). One such financial tool is the Canadian Registered Disabilities Saving Plan, which is meant to “transform the lives of people with disabilities from victims and consumers of tax dollars to contributing participants” by making it possible for families to plan for the long-term financial needs of a loved one with disabilities (p. 190).
Planning for an adult child with complex needs after we are gone is a daunting and potentially terrifying task. The Four Walls of My Freedom, which confronts questions of what society’s role is in supporting those with disabilities from both personal and philosophical angles, gives me a sense of how we might carve out a future for Charlie, enlisting the advocacy skills we have gained through love, hard work and fortitude we did not know we had until the “mystery and awe and wonder” of caring for our children showed us.
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Photo of the author’s husband and son via Flickr
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