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Life as we know it

Posted in Attitudes to disability, Ethics, Media by Matt at WelcometoIllinois on January 21, 2009

After waiting a couple of weeks for one of the big book chains in the UK to tell me they couldn’t get hold of Life As We Know It by Michael Bérubé I eventually had a copy sent over from the US via Amazon. It was worth the wait.

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I was very interested when I discovered Bérubé and the fact that Life As We Know It includes both a personal account of the progress of Bérubé’s son Jamie, and an “investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of ‘disabled’ children”. The book does not disappoint.

This is a book for the head as well as the heart. Bérubé’s love for his family and affection of those that have helped Jamie is evident as he discusses Jamie’s progress through the first four years of his life as he learned to live with and overcome issues such as Down’s syndrome, a hole in the heart, floppy larynx, jaundice, polycythemia, torticollis, vertebral anomoly, soliosis, hypotonia and feeding problems.

The progress that Jamies makes in those four years, and the processes he goes through to make that progress, are fascinating. Equally fascinating is Bérubé’s discussion of the ethical and philosophical questions that are prompted by disability, and attitudes to disability.

Bérubé covers issues relates to abortion, diagnostic screening, government policy, the US healthcare system, intelligence testing, eugenics, evolution, genetics, the history of attitudes to learning disabilities, language, educational policy, institutionalization, justice, altruism and more.

While Life As We Know It is a personal account, it takes an academic approach (Bérubé was director of the program for research in th humanities at the University of Illinois when the book was published and is currently the Paterno Family Professor in Literature at Pennsylvania State University) to the subject matter and as such it stands out when compared to many books written by parents of children with Down’s syndrome and may not be for everyone.

However, I found the book to be enjoyable, educational, informative, challenging and enthralling and would recommend it to anyone who is interested in the ethical issues related to Down’s syndrome and disability.

While the quoted sources take in Ludwig Wittgenstein, Naomi Wolf, Camille Paglia, Emmanuel Kant, Fyodor Dostoyevsky, Richard Dawkins, Rene Descartes, Noam Chomsky and St Augustine, there is also room for Chris Burke, and Kingsley and Levitz, not to mention Where the Wild Things Are, Goodnight Moon and The Easter bunny’s relationship with Jesus Christ.

The latter relates to the theory, dictated to Jamie’s case worker by her own son who also happens to have Down’s syndrome, at the age of five, as to how why rabbits came to be associated with the celebration of the resurrection of Christ:

“When Christ was crucified, all the world was sad. Everyone left. But the bunnies stayed, because they were not afraid. So Jesus told the bunnies that they were right not to be afraid, and it would henceforth be their task to bring cheer to children on Easter Sunday.”

The story demonstrates a theme that runs through Bérubé’s book and the communication that initially brought him to my attention; that we are only just beginning to understand the cognitive, imaginative, artistic and physical achievements people with Down’s syndrome are capable of.

In concluding his book Bérubé describes his hope that Jamie will one day become the author of his own story – both metaphorically and perhaps literally. There seems no doubt from Life As We Know It that he will one day be able to do so. The question remains as to whether society will enable others like him to also find their own voice.

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