Inspired by and in response to Louise Gornall.

Note: I have a physical disability, Cerebral Palsy, but I am very unlikely to have had the same experiences as Louise Gornall, or the main character she is writing. I have had surgery; I have a scar, and that’s okay with me. This is purely one individual, who has a disability, reacting and thinking about how the announcement of a book about a disabled girl made me feel …. what it has made me think about.

Louise Gornall, a unicorn loving, pink-haired, wonder of an author is in the process of writing her second novel. ‘Under rose-tainted Skies’ is one of my top reads of 2016 and a book that I urge everyone to read; I have no doubt that it is a story I will be thinking about for a long time. So, as you may expect, I was extremely excited when the announcement tweet appeared on my feed.

As a reader and frequenter of bookshops, it is not hard to see that those with physical disabilities (disabilities in general, really) are underrepresented in literature. As much as I do truly do believe that this needs to change, it was never something that personally affected me, or that I felt I missed. However, my reaction to the fact that Louise’s protagonist has a physical disability is causing me to question whether my neutrality on this topic is actually how I feel after all. 

Whilst I was pondering this (and continue to do so), @Rock_andor_roll (Louise’s Twitter) gave me even more to ruminate over, with the edition of these tweets:

Any disability, physical or not, visible or not, is entirely personal, and I completely agree with what Louise is saying. This is how I interpret Louise’s tweets: No experience of disability is the same, it depends on the individual, their personality and the support they have from services, friends, and family. It depends on access to services, how resourced that service is, the list could go on and on, and that is a crucial thing to remember. It would be impossible for one book to cover all experiences, it would be impossible for a thousand books to include all experiences. It is because of this that it is so exciting that more and more authors are beginning to write about topics such as mental health, disability, etc. as it gives us a glimpse into a range of different experiences and interpretations. But, the (in my opinion) false notion that they must show positivity and hope as the dominant force within the book is absurd. As a reader, it’s lovely to be told that things will be okay but to feel as though that’s the only thing we should be feeling about the situation almost feels like a refusal to listen.

So, Authors, write from you. write from your heart, from your head. from your research – talk, listen and write. Never feel obligated to portray something you are not feeling, or don’t believe. This is how we truly represent, by having a range of honest and open experiences written from an understanding and open viewpoint.

Personally, I almost find this more important: Not forgetting that there is an individual in that wheelchair, using those crutches, taking that medication. I read a lot of books about downtrodden and underconfident (able-bodied) characters. These characters, usually over the course of a summer or a school year, develop, accept who they are, grow, and all of a sudden find that life is perfect and previous troubles are just a distant memory. These once relatable characters suddenly aren’t. Overnight popularity, a shiny prince/princess as a girlfriend/boyfriend cannot solve all of life’s worries and concerns – they can help, sure – but it doesn’t mean that there will be a constant supply of sunshine and daisies; not a cloud in sight. Whilst I am reading them they feel hopeful and motivating: ‘yes, I just need to have more confidence!’ but afterward, usually when I am in bed, and my brain decides it’s party time, I start to feel a little less motivated and a bit more inadequate. This may just be me, but I wanted to set the scene. I love a happy ending, but it’s perfectly okay for that happy ending to be a bit cloudy. To have things that still need working out, to be overcome, to be accepted or fought. By realising this, characters and stories are more likely to be relatable, and to speak to the reader; this also rings true (maybe more so) when the main character has a disability.

From what I’ve read and heard, predominantly following the release of the ‘Me before you’ film adaptation, the concern for writers and publishers, and the aghast assumption from a number of people and groups whom I’m not sure I’d get along with, is that books about disability are trying to tell us how to feel and what to do … Umm, no. Sorry, but not only do I find that assumption incredibly insulting, but it also assumes that we, as disabled people, need to be shielded from the realities of living with a disability. We need to protected and reassured that everything will be okay, that we’ll have just the same experiences as everybody else and that our lives are going to be hunky-dory and, ultimately everything will be just as we want it. Of course, I 100% believe that anyone – regardless of being disabled or able-bodied – can make life whatever they want, go and do what you want to do, go and achieve and live life to the fullest! But ignoring the struggles can be very isolating.

Just like Louise writes and tweets from her experiences, I can only truly speak for me, and I  struggle with all the hang-ups that a lot of people do: under-confidence, body image, etc. I also use a wheelchair, and have never been in a relationship, or been close to being in one. I don’t know whether that is down to me: personality, lack of confidence,  appearance, or my disability – that everything would need to be checked for access, that I can’t walk on the beach, walk along holding hands, or sit under a tree – who knows. What I do know is that my doubts and personal barriers, the ones felt by people the world over, should not be overshadowed or discounted by the fact that I am disabled.

No matter what disability you may have, whatever form it may take, you are not the sum total of that disability. You are also an individual, a human being with feelings and emotions that are felt by you and, may be changed, exacerbated, lessened, whatever by the fact that you also have a disability, but they don’t belong to the disability. It is important for literature to realise this, write disabled characters – please – but don’t forget that we are also people, individuals, girls, boys, teenagers, adults, children. We have hopes and dreams that we wish to achieve, and we also have barriers: barriers from the disability, and barriers from just being us. Don’t discount or forget to write us, in favour of writing the disability.