Representation and words used to describe people and communities are so important. That’s why Clare Christian and I co-founded the ADCI Literary Prize to improve disability representation in fiction, because a) you rarely see us and b) when you do it’s usually a stereotype seen through a non-disabled lens, e.g. triumph over tragedy (the need to prove you’re not really disabled), misery memoirs of how awful it is to be disabled, or, and this one really gets my goat, miracle cures if you just try hard enough …
Coming down from the high of launching the ADCI Literary Prize on 1st June, this week I saw an example of what we’re up against in the media when it comes to disability representation. It reminded me of how far we still have to go. Disability is rarely covered in the news unless it’s about benefits, charity campaigns and so on. In a newspaper that’s regarded as one of the better ones for social awareness I saw an article about a disabled man climbing one of the world’s highest mountains. Next to that was a piece from a woman talking about how difficult it is for her to adapt to becoming disabled and her dread of needing care.
Both are valid stories about those people’s lives, but what rankled me is that there you have it, on one screen, the two common stereotypes: triumph over tragedy, and disability misery. I’m not knocking either of the people concerned or wishing to invalidate their experiences – certainly it’s not easy being disabled and to achieve a personal goal is a great thing. What I am concerned with is that’s all the portrayal of disability there is in the media and nothing in between.
If you’re repeatedly not included in contemporary culture, or are told you can only be there if you fit into a certain box, it affects your identity and, on a wider level, the way non-disabled people view disability and disabled people if they’re not acquainted with them. Saint or scrounger? That’s the rhetoric we’re often up against in the media, with no middle ground for disabled and chronically ill people who are just getting on, living their everyday lives. Yes, disability affects our lives but it’s not all we are. Don’t forget that disability cuts across age, gender, race, income, nationality and so on. There’s so much more to our identities.
On Twitter I’m actively involved with the disabled community and regularly see comments from ordinary disabled and chronically ill people who say that inspirational triumph over tragedy stories make them feel worse and that they’re not the ‘right’ sort of socially acceptable disabled person. Not all of us have the ability to conquer mountains. We also may not have the money or contacts to find helpers, the time off work to achieve a lifetime goal or even the stamina to do so, and I say this as a person with chronic pain and fatigue.
Disabled people on Twitter also say that they find the misery stories troublesome because there are few, if any, positive representations to provide balance. That leads to non-disabled people assuming that disability is the worst thing ever, that a disabled person has no quality of life and that disability is something to be feared. It is society and its presentation and treatment of disabled people that disables us the most, and this hurdle is bigger than any mountain.
I truly hope that the ADCI Literary Prize will make a difference, however small it may be in its early years, to positive disability representation in novels and also in our culture. I want everyone to realise that it’s OK to be ordinary, to make the best of the life you have in your own way, and you don’t have to do something superhuman to prove your validity as a human being. I hope it will kick-start a discussion about equality for all and that in the future the steps forward will vastly outnumber the steps back.