Last year, I was diagnosed with a disability. It’s a disability I’ve had my whole life, but it’s not something that anyone who met me would have necessarily picked up on – indeed, it took me the best part of thirty years to really be able to articulate that something was wrong. I am able to hide it; I am lucky enough to be able to choose whether to tell people or not. Still, when I got the diagnosis, I felt distraught. I had no framework to make sense of how this diagnosis – this identity, really – related to the self that was and had always been me.
Jan Grue, professor of qualitative research at the University of Oslo and something of an intellectual celebrity in his native Norway, has never been so lucky as not to realise that he is disabled. His disability is obvious and non-negotiable, and he cannot hide it from anyone: aged three, Grue was diagnosed with spinal muscular atrophy and he began using a wheelchair soon after. His muscles have always been tiny and his arms have grown to bend at odd angles; while he can walk, and for much of his life insisted on doing so as far as possible, he has always struggled to hold himself comfortably upright. As a child, he tells us in the opening passages of his memoir of living with a disability, Grue was cared for and taught by adults who never expected him to live to the age that he has, let alone become a professor, a writer, a husband and a father.
I’m not sure if I really do live a life like Grue’s, even if we are both academics and professional writers with disabilities. Still, it would be hard to read this book and not empathise profoundly with its author. It is perhaps the perfect book to read if