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>Read Any Good Books on the Ethics of Therapeutic Intervention?

June 6, 2011

>One thing I’m looking forward to: in Heaven we will have perfect bodies. No fixing required. There will be no more crying and no more pain.

In the mean time, we live on earth and God has seen fit to develop a body of wisdom in the medical community that creates options for intervention that we don’t have an equally deep body of experience coping with. Like Pediatric Medical Trauma and medically induced PTSD in young children like Joy.

As recently as twenty years ago, children born as early and as small as Joy and Amy (27 weeks, one pound) didn’t survive. Fifty years ago, parents of children with quadriplegic cerebral palsy were advised it was in their family’s and the child’s best interest to institutionalize them. In institutions –the good ones –they were cared for, fed, bathed, rolled over, pushed out into the garden in a chair on a sunny day. Children who were cognitively able were taken to a school room and taught the basics of reading, math, and art.

But major rehabilitation wasn’t high on the agenda because kids with significant disabilities had no real future as integrated members of society. Some parents ignored that advice, kept their children at home, valued them as an equal member of the family and set their own agenda for rehabilitation. (Did you read the Karen books by Marie Killilea when you were growing up like I did? Hers was one of those families.)

Fifty years later, technology and medical intervention have come a long way and the incidence of long-term disabilities in children continues to increase as more and more of them survive. But there is only one book on my shelf that has helped me consider the ethics of medical intervention, Kathie Snow’s Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities which is ten years old, out of print, and controversial –as you might expect when she asks us to stop and consider questions like this: just because we have the technical ability to make kids walk who would never have been able to walk 10-20 years ago, should we? She isn’t talking about life-saving intervention, but “quality of life” choices. We pay lip-service to not letting our kids’ disabilities define them. But how much time do we spend capitalizing on their God-given assets vs. remediating their society-defined “problems”? (It is also controversial because at the end the book, after advising parents how to advocate for their child in the special education system, she confesses she pulled her son, who has quadriplegia, out of public school in Jr. High to home school him.)

There is an ever-growing body of textbooks on medical ethics; it was one of the most fascinating classes I took in college. But I am also hunting for books that I can read while raising kids with disabilities. Any ideas?

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