Putting words on paper
Nobody said writing was going to be easy.
When I designed my writing career – back in the 1960s and 1970s – it was something I would do when my main career (physics – yes, I knew that before I was 12) was over, and I could retire to do whatever I wanted after a long and productive life of work.
They say, if you want to make God laugh, tell Her your plans.
My plans – the laughed-at ones
I loved books so much I wrote the first Time Travel Romance novella when I was 14. After I devoured everything else I could get – there seemed to be a hole missing, so I filled it.
I never thought I’d have to write with my brain off. That was never part of the plan – it isn’t part of anyone’s plan.
The world is very difficult for people with disabilities. The physical part is hard, self-care is hard, the mental parts are hard. It can consume every bit of your energy just to stay fed and clothed and have shelter – and that’s for the lucky ones with family and disability insurance. It must be a true hell for those without even the minimum of a support system.
If the drive is there, it can’t be denied
But unless it is truly, totally impossible to write, those of us who are disabled – and also happen to be writers – are going to try to find a way to write something. Because the drive comes from within, and it is similar to the drive to breathe: it is always there, always struggling, and always winning – as long as the air part continues.
This is true for other artists and craftspeople, but I don’t have their talents, so I can’t speak for them. I suspect it parallels the experience of writers: for every Christy Brown (My Left Foot) there is a painter without use of hands who uses a paintbrush or a computer somehow differently than with hands.
I know people who are poets – and happen to be disabled. I know people who blog – and happen to be disabled; they don’t always blog about disability, but sometimes they do. I know novelists who fought disability daily – Flannery O’Connor comes to mind – and still wrote novels. Memoir is a good category – and gave us The Sound of a Wild Snail Eating. I’m meeting more people in that category online, especially in the new world of indie and self-publishing.
Many of these writers don’t have the energy required to go through the traditional publishing gauntlet: the emotional swings from the whole rejection-after-rejection process is crippling when you already don’t have enough energy to write.
The drive to publish is there – and the modern world has given some of us the outlet we needed.
Judgment of the writing
The world has two ways of judging us:
1) isn’t it wonderful that she can write – after all, she is disabled – and how inspiring it is! and
2) as if we were not disabled.
I don’t knock the first category – there is a place in the world for art which inspires other people to live better, or do art by following an example.
I happen to prefer the second category – the one I aspired to all those years ago when I set up my plans. Writing is a perfect venue for this, because all a reader sees is the end of the process, ‘the product’ (as a writer friend of my grandparents, Aaron Marc (Rod) Stein, called it when we visited his NY apartment and he showed us all his books in the living room – hardcover, book club, foreign editions on the bookcases all around the room). A reader may hear about or read about the writer’s difficulties in life, before or after becoming aware of the writer, but ‘the product’ is what may make that reader tell someone else about it.
Character with disabilities – someone needs to write them
Someone needs to take on the task – and characters with disabilities have to be fully realized – like any other character – which means they get to be the Main Character in some stories.
Writing about characters who are disabled is something we who write despite disability obviously have an inside take on. That is where my current novel is going: of the three principal characters, the Main Character, Kary, has the disability that I have – because that’s how this particular story came to me.
The danger is that I have the same problem writers without my disability have: my own limits are known to me, but I can only come by a complete description of ME/CFS by reading about and knowing other people who also have it – our experiences can be quite different, and I know I will probably be taken to task by making my character somehow not as bad as some of my readers with CFS might be.
I beg indulgence there – I can only create one character at a time, and still write about her life in any detail.
We choose, as writers, how much of ourselves to put into our characters. But readers can’t necessarily tell if a good writer actually hiked in the frozen North, or just has a great imagination and great research skills. It comes down to ‘the product.’
That is where, for Pride’s Children, I hope to create both the experience of being completely bound by a disability – and that of being yourself despite it.