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3 Books On Raising Children With Disabilities (Slideshow)

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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.

Jersey guyz

 

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Photo of the author’s husband and son via Flickr

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19 comments

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1:55PM PDT on Aug 14, 2012

thanks

3:48PM PDT on Aug 13, 2012

Thanks

3:47PM PDT on Aug 13, 2012

Thanks

3:35PM PDT on Aug 13, 2012

ty

3:35PM PDT on Aug 13, 2012

ty

2:50PM PDT on Aug 13, 2012

Thanks Kristina.

11:59AM PDT on Aug 13, 2012

Interesting perspective and resources.

So many resources are available in good economic times get cut when the need is greatest.
I have to wonder if any of our lawmakers have been caught in that gap.

11:49AM PDT on Aug 13, 2012

I think a lot of parents of children with disabilities can become fighters, with help & support. It can change the family's lifestyle for good, as the disabilities chart for unplanned challenges & skills. Kudos for those who can hold it together.

10:28AM PDT on Aug 13, 2012

Unfortunately not all people who parent disabled children have wealth. As a disabled person with CP, from a poor community, I have seen many things about disability change over my lifetime. When I was a child, it was mostly poor people who had disabled children, and this was attributed to bad quality of life and bad diet. The common attitude was that the poor were to blame for the disabilities of their children. Then, over the years, it became the middle classes who had the highest percentage of children, and the idea of blame went away. It became more acceptable to be the parent of a disabled child, and the 'rights' movement came to the fore. That was very good for a lot of diabled folks,but also not so good for others. Some parents were 'tigers' - setting their children challenges that they clearly were not up to. Now in the UK, we have a PM who has been the father of a disabled child. Does this mean that he is more sympathetic to the plight of the disabled? I suspect not. Instead, we have the Tory government cutting benefits for the disabled, forcing even the dying back to work (or at least, off the dole) and shutting factories like Remploy where previously the disabled had jobs that were safe. So, parents of disabled children are having a really hard time of it - as if things have come full circle.

9:47AM PDT on Aug 13, 2012

every parent coping with the challenges of raising a differently-abled child can use the supports of connecting with others who face(d) the same type of challenges

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