THE BLOG

Books Hold A Special Place In My Heart - I Just Wish They'd Have A Place For Me

31/01/2017 09:06 GMT | Updated 31/01/2017 11:03 GMT
Heather Lacey

Ever since I first learnt to read I remember being completely enamoured by the written word.

But it wasn't until I reached university that I realised how much literature didn't include people like me.

At University I vividly recall sitting in the library reading Hodgson-Burnett's The Secret Garden (1911). Not long after I started, I stumbled upon the following lines: 'He's a hunchback, and he's horrid...[if] it'd be another hunchback like him...it'd better die.'

I closed the book in disgust.

You see, as well as having cerebral palsy, I also have Scheuermann's kyphosis, a curve of the spine, though tactless doctors have referred to it in simpler terms: hunchback.

Memories of restrictive spinal braces, jibes of Quasimodo and relentless poking and prodding in cold hospital clinics came flooding back to me..."It is a horrid hunchback... better off dead."

I was absolutely horrified by the language used in The Secret Garden. I was even more deflated and hurt when none of the other students who read the book seemed bothered about the issue.

No one.

Though I'd always loved books, I struggled to recall characters like myself amongst their pages. Where were the characters like me who - despite their everyday pain, frequent hospital visits and difficulties - still led rich, fulfilling lives, with their own fair share of positive experiences?

As far as I was concerned, they simply didn't exist.

Instead, representation of disability has been like The Secret Garden - such as the much-critiqued Me Before You (2012) - where disability is seen as a personal tragedy, often expressing the idea that it was better to be dead than to be disabled... or else be a burden on society.

When I finished university, I was desperate to unearth more positive literary representations, with narratives that explored a more 'authentic' disabled experience, dealing with the good as well as the bad, much like disabled people themselves - but I didn't know where to look.

I remember it taking me months to find contemporary portrayals that fulfilled the criteria. And though I eventually succeeded, some of the finds were nothing short of luck. One was found amongst the shelves of a pound store; the others were found after hours of scouring reviews on 'good reads'.

The literary representations I eventually found were great ones - Pilcrow (2008) and the sequel Cedilla (2011), Grace Williams Says It Loud (2010) and What Looks Like Crazy on an Ordinary Day (1997) - which explored disability in a positive way, where characters experience fulfilling lives despite their difficulties.

It simply should not be this hard to unearth positive, true-to-life literary portrayals of disability, particularly when we take into account that the disabled community is the largest minority group globally.

That's why it is so important to invest in the disability charity Scope's campaign for National storytelling week and discuss the representation of disabled people and the need for it to be improved in literature.

Why shouldn't disabled people have their own literary heroes, who experience the good despite their impairments? Role models who are happy to be alive, and where disability is merely one facet of themselves rather than an all-encompassing, negative, miserable issue? I'd be lying if I said my life was peachy all of the time; I know it isn't. But aren't my experiences just as valuable?

I'd like to think so.

I think we often forget that disability does not discriminate. It doesn't care who you are, or where you come from, and it can happen to any of us at any time. I'd like to think that one day a little girl like me will grow up reading books that explore and examine the disabled experience for the rich, positive, diverse experience that it is.

It's National Storytelling Week and disability charity Scope is pushing for more representation of disability in literature.