Off of the back of my post about disability representation in the classroom I decided to have a look into some books that included disability representation. I have been a bookworm for as long as I remember but before I became disabled myself disability representation wasn’t something I necessarily looked for when buying and reading books. It is only in the last few years I have come to realise just how important representation of all types is. It is well known that children look to literature as a source of identification. They are able to associate themselves with the characters they read about and these associations begin to shape their beliefs about themselves from a young age.
In an ideal world, literature would accurately reflect all demographics within society. However this is not the case. Whilst in recent years progress has been made, many marginalized groups are still underrepresented within literature. One of these marginalised groups is disabled people.
So today’s post is the first in an ongoing series about books I’ve read recently which have included disability representation.
The first book I wanted to write about is Girl In The Window by Penny Joelson.
Throughout Girl In The Window I really enjoyed how the story of Kasia’s recovery from Myalgic Encephalomyelitis (M.E) was weaved alongside the main storyline. The novel explains how Kasia developed M.E after a bout of tonsillitis. Initially leaving her house bound, isolated from her peers and the outside world.
As someone with M.E I was a bit sceptical as to how it would be portrayed but it was done amazingly. Highlighting the physical, social and emotional effects an ME diagnosis has. Many parts of the book resonated with me greatly. A particular part that I could relate to was when Kasia had an event that she really wanted to go to but couldn’t physically manage. Her parents then suggested using a wheelchair to help, explaining that the chair could be used as a tool to help lessen the post exertional malaise (PEM).
Throughout the novel many aspects of living with M.E are explored; from the importance of pacing and tackling activity in manageable chunks to the debilitating nature of PEM. As well as the isolation, loneliness and overwhelming desire to lead a normal life felt by many sufferers.
As the novel progresses Kasia makes gradual progress, establishing a daily routine that allows her to stabilise a baseline from which to build. The book accurately portrays how the journey of learning to manage a chronic illness is never straightforward; it’s not without the aspect of trial and error, the relapses and the setbacks. Sometimes no matter how careful you are, flares can still happen without an obvious reason.
The frustration flares and PEM cause is also portrayed brilliantly. The way in which us chronically ill folk often seek to blame ourselves for the increase of symptoms “because we should have known better than to push it.” But in reality we are seeking to enjoy opportunities and events as much as the average healthy person. So sometimes pushing it a little bit to have some fun is needed, it makes us human.
It wasn’t until after reading the book I realised that Penny herself had lived experience of life with M.E, falling ill aged 25 whilst working as a teacher. After over a decade of varying symptom levels Penny deems herself as better “about 60 to 70 percent” explaining in this piece “I live a full life and I value every moment but I have limitations. I don’t have anywhere near the energy of the average person my age. I can’t work full time. If I do too much, the leg pain and swollen glands and exhaustion return. I still have to be careful. I am better – but not recovered.”
This book is incredibly important to me. I won’t lie, reading it made me particularly emotional. It was the first time in a long time I had been able to fully identify with a book character with every part of me. To see my struggles reflected back to me in the pages, something I had missed for a very long time.