Writers have a unique place in the world. To explore the things we all fear, and report back to the land of the living.
What human would choose to be disabled over able? What human would choose to live in a wheelchair if he could instead choose to walk? What human would select, from life’s options, to not see, to not hear, to not speak? Save possibly those who have already seen, heard, or said too much horror.
We fear disability. We fear weakness. We fear dependence on others – what if they choose to not take care of us?
And we forget, until it is too late, that every one of us is a moment from being disabled.
Or, MORE disabled. Yes, if you are disabled, things can still get worse.
This is the human condition.
But writers don’t just report what they see and what they know. They also report the ways of living people have found, IN SPITE OF their disabilities, or even because of them.
And some writers not only report, but create. They ask the perennial question, What if?…
If I, a writer, have a disability, I have three choices of how to let that affect my writing:
I can make it the most important part of my writing: I can write ABOUT the disability, make it central to my stories, write what I KNOW.
Or I can ignore it – and pretend I am like everyone else – and write what non-disabled people write. There is a long history of this in writing: the women writing romances about 20-year-old young women and 30-year-old available lords (astronauts, businessmen, …) are not twenty themselves – Nora Roberts is not twenty any more.
Books are escape, even for disabled readers. But it is not good for a steady diet, because it ignores that which is one of the major realities in some readers’ lives.
Or I can make it subtext. One of the things a character has to deal with, well or poorly, in the course of her daily life – but not the most important feature of it. Nor the constant battle. The disability becomes more real that way – except for disabled or ill people in crisis, daily life goes on: decisions are made, work happens, relationships get created and destroyed.
The lever I have to play with there is the strength of the disability, the level to which it flares at its worst, diminishes to at its better times. That’s where the nuances come in: I can put in how the consequences are compounded by stress, relieved a bit by a sympathetic ear. I can show the things it affects in daily life – and the ones it doesn’t, or isn’t allowed to.
I can show the choices the character has to make – which are no different as characteristics than the choices a character with limited skills or limited funds must make.
It is easier to write characters without disabilities – there is enough drama in most books without adding another layer.
But a steady diet of that – or worse, that plus a small selection of books where the disability or illness is relentless – gets exhausting. For the READER, especially the reader with disabilities herself. She feels as left out as children who never see a child of their own color skin on the cover of a book.
The trick is to maintain balance, in life (if possible) and in fiction.
The disabled character must also be a main character – there are too many stories already where an ‘able’ person has a disabled friend or sidekick; those are included to allow the MAIN character to display empathy.
And they don’t get the girl – the Hunchback of Notre Dame is supposed to be happy because the girl he adores goes with a ‘better man.’ Or Belle gets the Beast – but only when he turns back into a rich handsome prince.
Shrek ALMOST got it – except for the part where the heroine somehow manages to look ‘normal’ – and beautiful – and thin – part of the time, and then chooses to stay as her ogress ‘real self.’ NOBODY gets that choice in real life.
It is very important to have some of these books available, because books are a way of increasing empathy with other humans by reading about them, and, without a true report back from the front lines in the disability wars, many readers are left without a way to learn that empathy – until the day they have to deal with it personally in themselves, a friend, or a loved one. And then it is too late, and the problem is too real.
So I choose to write a character where readers won’t know until the end whether her disability is the kiss of death for her aspirations. Because I want to read it – and can’t find anything like what I want.
Do you write disabled characters? Characters who are ill? How?
Maybe unsurprisingly, I find it exhausting, in creative non-fiction, to write about my own (mostly invisible, nonetheless debilitating) disabilities. So there is a shadow standing behind everything I write.
Either I need to fictionalize some of my experiences, or use the sociological technique of writing as an insider-outsider. Too much intimate detail is not always called for. But pretending I am “fine” either mutes me, or puts more pressure on me to deal elegantly (I don’t, though) with some all-too-common and other somewhat mysterious disabilities.
(Though I often miss my friends and the Pacific Ocean, at least I don’t live in Southern California any more where I would need to be “fantastic!”)
We are complex beings, we writers – but something drives us to write, and it may be that we see a need to express our uniqueness, because no one else has captured it for us.
Whatever you live with – from the cosmic ‘luck of the draw’ set that is only you – has to come out – or be suppressed – in your writing. How could it be any other way?
I know I resisted initially – why would readers be interested in a story with a sick person in it? And then I answered myself: because otherwise they have no way of knowing what that’s like. And that life continues. And that disabled people have the same dreams that everyone has – just more obstacles in their paths to attain them.
We read Uncle Tom’s Cabin because otherwise we don’t know what it’s like to be a slave. Not really. The fiction is the closest other humans can get who do not have the horrible burden of BEING a slave. It is necessary for all those people who thought ‘slaves are happy, well cared for, just have to work – and someone feeds them.’ And if you don’t think there were people like that, then why did the book hit so hard?
Life should be a continual process of having our eyes opened. And often someone needs to do it FOR us, by showing us how bad our initial guesses are.
You are going to be affected, as a writer, by who you are. Only you can choose how to handle that.
I very deliberately set out to create my main character(s) of James&Catskinner as a fictionalized portrayal of dissociative identity disorder. I wanted to give the reader the experience of living with DID and I figured that by writing about it in fantasy would make it easier for readers to accept.
I also wrote a post recently about fibromyalgia, and how living with chronic pain has shaped my outlook on life. It’s less of an overt theme in my work, but looking back over my work I can see how it colors my perceptions of the world and how that shows up in descriptions.
Fantasy is a good place to put DID – the reader is open to expect all kinds of new things to learn about characters.