If I ask a random person to name me a great book that features disabled characters they may come up with some of those children’s classics - Heidi, What Katie Did, and The Secret Garden. These were an enjoyable childhood read but they set a pattern that reflected much of the opinions of the time concerning disabled people - and children. All of them suggest that you can “get better” if you try hard, that it’s somehow your fault if you’re not “cured”. I didn’t understand the key importance is the balanced availability of work BY the disabled writer. Within activism circles, we have a particular mantra: Nothing about us without us. I didn’t know that slogan as a teenager, but I knew that writing the disability story in fiction was my purpose and vocation.
A very popular contemporary book is Me Before You by Jojo Moyes. I dislike it partly on personal taste but more because it uses disability as a device that I consider damaging. The plot is a basic modern Cinderella story if you haven’t read it. Posh young man Will, a wheelchair user paralysed below the neck, lives with posh parents in a castle. He can’t get any care support because he is basically obnoxious. Along comes Lou from the poor side of the tracks to be some very unrealistic support worker. In the film version, there is an entourage of other help so Will actually has a pretty good life. Naturally, they fall in love but then Will weirdly decides he wants to kill himself. Cinderella Lou doesn’t get the glass slipper in this...and ‘prince’ Will dies. I did a piece for The Guardian if you want to know more about this particular book and film, which upset many disabled activists globally.
As a writer with a rebellious punky past and a passionate campaigner for equality, I never condone censorship. But disabled writers feel censored within mainstream publishing. I know I do and I’ve been in this game professionally for twenty-five years, paying my dues while up against so many barriers that a non-disabled writer cannot imagine.
As for non-disabled writers including a disabled character in their work, I’ve done a few “sensitivity reads” and noticed writers who take on a disabled character as the main protagonist really struggle with authenticity. No surprise there. Resist the trope in the mainstream which is what disabled activists term the medical/individual model of disability. Work instead to the Social Model - which I explain here in my Byline Times piece - that liberates us and hopefully your understanding that we face barriers, discrimination and ingrained negative attitudes. A simple example would be, a disabled character is planning a date with her new girlfriend. She discovers there are steps at the restaurant. She won’t curse she’s “wheelchair-bound with a crippling disease” she will curse those steps and that we live in a society where that’s acceptable.
Apologies for shocking you, but some disabled people are miserable. Some disabled people are optimists. Others are criminals. Then there are the partners, their lovers. Many may be in pain who hate their lives. Many will relish that they outlived many dire expectations and thrived. If you take out the word disabled, what does this show you? The human story with unique and untold labyrinths and layers.
My memoir, First in the World Somewhere, was published in 2017 and my debut poetry collection, Come Home Alive, in 2018. I’ve also written four novels, none published. Yes, now I’m lucky, I have an agent and my current novel is on submission as I write (whispers… the title is a secret…).
I do realise Covid hasn’t helped any of us writers and there’s (understandably) increased nervousness by publishers on taking a risk. But is disability still the riskiest of subjects where literature is concerned?
Thankfully my agent and others in the industry are realising that the highly varied disability voice is here. And fear not, I will never give up. I’m inspired particularly by women writers of colour who have made this journey before me and are just starting to enter the mainstream where they belong, telling stories that are engaging readers.
Meanwhile, writers DO include disabled people in your work. But, critically, watch for cultural misappropriation and allow me my own space to tell my authentic and unique stories alongside you all.
Bio: Penny Pepper is an acclaimed wheelchair-using author, poet, performer & disabled activist. A genre-defying and versatile writer, her work focuses on the examination of difference, inequality and identity. She tells stories we haven’t heard, making others see life differently, always with humour and wisdom. Her champions include Jake Arnott, Margaret Drabble, John Mitchison and Danuta Kean.