Sunday, 15 April 2012

Book Review: "The Four Walls of My Freedom"

My family’s Easter was quiet this year, and a damaged router cord meant no Internet access for the weekend. So I spent Easter Sunday and Monday reading a book that I believe is very important: The Four Walls of My Freedom.

As promised last week, here is my review of Donna Thomson’s The Four Walls of My Freedom.

Girl With The Cane Book Review: The Four Walls of My Freedom

Donna Thomson's The Four Walls of My Freedom (McArthur and Co., 2010) is a must-read for anyone involved in the disabilities field.

Thomson's 263-page work (including acknowledgments, appendices, endnotes, bibliography and index) is fascinating firstly because it’s part memoir. Thomson and her husband Jim Wright are parents to daughter Natalie and son Nicholas, who has cerebral palsy. The Wrights’ story of raising Nicholas will be all-too-familiar to many families: struggles to get him properly diagnosed and find effective early intervention, finding public schools that were willing to take him as a student, securing funding for respite, personal development, and future planning, dealing with his severe health issues and constant pain, balancing his needs with Natalie’s as best as they could, and trying to avoid burnout themselves as caregivers. All of this as Jim worked in high-profile diplomatic posts with the Canadian government that required a family move to London from 1992 to 1996, and again from 2006 to 2012.

Thomson’s narrative is by turns moving, gently humourous, heart-breaking, and, in the case of her account of Nichloas’ first hip surgery, horrifying.  A deep passion underlies all her writing about Nicholas and her family, however.  Her dedication to making sure that Nicholas, now in his twenties, is living the life that he wants to live, enriched by relationships with people of his choosing and activities in which he finds fulfillment, is palpable from the first page.

Thomson’s perspective as the mother of a child with severe disabilities gives her other voice in The Four Walls of My Freedom a powerful authority.  Interspersing her insights with her family narrative, Thomson examines the current modes of thinking underlying support for people with disabilities from a justice perspective. She suggests reshaping them according them to economic philosopher Amartya Sen’s Capability Approach, most typically applied to people living in poverty.  She deserves major intellectual kudos for tackling traditionally “thorny” philosophical issues such as what gives a person’s life value, what makes them “worthy” of receiving supports and services, and what constitutes “contribution to society”, and for backing up her arguments with the work of philosophers also currently asking these questions.

Thomson’s discussion of specific disability supports focuses mainly on those in Ontario, Canada, where Nicholas spent most of his life and now lives. However, her loving description of the life that Nicholas lives now, made possible largely in part by applying her general philosophies regarding support for people with disabilities in general, paint a picture of possibility and empowerment for both Nicholas and his family that needs to be recreated everywhere. Nicholas, who uses machines to breathe, eat and talk, chooses to spend most of his time in bed. After years of participating in adaptive sports and extracurricular activities at his schools and enjoying face-to-face contact with students his own age and his teachers, he now prefers the virtual worlds of his computer, his eBay business, online courses and the company of family and support workers. He can access all of these from his room and his bed, the physical space where he can remain most consistently free from the intense physical pain that still plagues him despite surgical interventions and heavy medication.  It’s perhaps not the life that you would choose. But it’s the life that Nicholas chooses. Thomson shows compellingly that this is what truly matters to her and should matter to us.

Anyone who works with people with disabilities knows that it’s no easy task, to assist someone who faces the challenges that Nicholas does to construct a life of their choosing. The joy of The Four Walls of My Freedom is Thomson’s seemingly unwavering faith as she and her husband raised Nicholas that it could be done, that it must be done, and that all people with disabilities must have the resources to effectively do it as well. To this end, she discusses new directions for planning and support policies, such as support facilitated through personal networks and individualized funding that is not dependent on government funding (her discussion of the Planned Lifestyle Advocate Network covers these topics extensively), income support mechanisms that allow people with disabilities to save money for the future (such as Ontario’s Registered Disability Savings Plan), and provisions by government, through changes in the tax code and in regulations surrounding residential placement options for people with severe disabilities, to allow carers to eventually retire and people with disabilities to access a greater degree of personal autonomy. It’s worth noting that she believes that these service innovations could also innovate and invigorate care for the elderly.

Thought-provoking, engaging, and very touching, The Four Walls of My Freedom shows us the next steps to ensuring that people with disabilities get the person-centred support that they need to have what the rest of take for granted: fulfilling lives, enriched by relationships and activities that we enjoy, with access to our communities in ways that we choose, with our safety and dignity reasonably ensured. In a just society, no one deserves anything less.

The Four Walls of My Freedom is available on Amazon everywhere. The paperback is due for release in May, 2012.

Donna Thomson's website:

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