Translated by B. L. Crook

I do not want to live a life of rage and grief. I write it off me. I reject it.”

I Live a Life Like Yours is published by Pushkin Press, and was longlisted for the Barbellion Prize (for authors living with chronic illness and disability, and now in its second year). It was also the first work of Norwegian non-fiction in 50 years to be nominated for the Nordic Council’s Literature Prize.

Jan Grue is a highly successful academic and writer, a father and husband. He also lives with a severe physical disability, and was diagnosed with spinal muscular atrophy at the age of three. His condition was expected to progress, and his limited mobility to deteriorate even more, but that hasn’t been the case, and indeed his childhood diagnosis no longer stands. Nevertheless, he remains a disabled man living in a world that does not cater well for disabled people, even in major progressive societies like Norway, the USA and the Netherlands – all places that he has lived over the years.

He is intelligent, socially adept and ambitious, with supportive family and friends – all of which have helped him to push against the strictures surrounding those living with disability. But he is articulate, erudite and philosophical in recognising the societal impediments that throw up additional obstacles to those trying to navigate the world with a disability. He reads and interprets widely, referencing writers from Michael Foucault, to Erving Goffman, to Joan Didion.

He recognises the invasive procedures to which children with medical conditions and disabilities are subjected to, and which made me reflect on my daughter’s encounters from birth with neurologists, physiotherapists, occupational therapists, speech therapists, psychologists, experts in development and neurodisability, autism specialists, radiographers and orthopaedic surgeons after a stroke just before birth.

I was not an institutionalized child. No more so than any other kindergarten or primary school child. However, I was constantly in contact with institutions that do not exist for everyone. I have memories of being examined by doctors and physiotherapists. I am six, seven, eight years old in these memories, in rooms that are a little too cold, in my underwear. Someone is touching the muscles of my arms and legs. I am instructed to walk from one end of the room, turn, and walk back. I know that I am being observed. I don’t know why. Then my parents and I go home.”

“The language of clinics and institutions is the language of depression, expecting little and hoping for even less.”

Jan Grue’s eloquent memoir is great, if heart-breaking, on the internalised sense of shame that living with disability can create, and which was recognised by Foucault in his writing – and how difficult and necessary it is to resist this subjugation:

The clinical gaze creates subjects … The subject always has a self-narrative, she is an active party and learns to believe that her actions are her own, thus the subject comes to believe that she alone bears responsibility for the situation in which she finds herself. Subjugation is an assignment of responsibility without self-determination, resulting in the internalization of guilt, which then becomes shame.”

Grue is good too at articulating the thoughts that whirl around my own mind, which is forever full of what ifs:

It could have been different. It always could have been different. But who would I have been if I hadn’t been born with a muscular disease? There is a lived life and there is an unlived life, and the lived life contains the unlived one as water contains an air bubble.”

This book is important in challenging able-bodied readers to see the world from a different perspective. It is also a book about acceptance.

As the able-bodied parent of a disabled child I found the book didn’t depress me as one might assume, as the points Grue makes simply articulate aspects of life with disability that are already familiar or evident to us as a family, such as the need endlessly to fight institutions and service providers for basic support, in the face of red tape and institutional barriers. And Grue is an inspiring figure for disabled and non-disabled readers alike, because against so many odds he lives, in many way, a ‘normal’, indeed highly successful, life.

And you may ask yourself, Well … how did I get here?” (Talking Heads)

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2 Comments

  1. This is fascinating, as the grandmother of a disabled child I have always wondered about the way she has experienced her life, as I can only see it from the outside and guess at the lived and unlived life.

    Like

  2. Goodness me, this sounds like a really powerful read, and I’m glad the author was able to make it recognisable and truthful without depressing someone in your situation. All the people I know with children living with disabilities of various sorts have to fight so very hard for their children, and I’m glad it brings that out.

    Liked by 1 person

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