When I first became ill in 2005, I didn’t cope very well. It was like a car crash, followed by a long spell of bereavement as I struggled to adjust to altered physical and mental functioning.
Misdiagnosed more times than I care to remember, I was eventually told what was considered to be wrong with me. I had ME, or Chronic Fatigue Syndrome. For a while, it consumed me. I built a whole new identity around this seemingly important information.
I joined a support group, got all the leaflets, read up on research… and became a crashing bore.
I was isolated and extremely lonely, and found that people who had previously been good friends just melted away. Eventually, when I rediscovered my equilibrium, many of them returned. They will tell you I was very, very angry. At everything.
One thing that helped enormously in the months and years that followed was blogging. I blogged about my battles with the NHS and adult social care, about being a single mum, about my legal fight to stop my son becoming a young carer, how at times I felt my son may be taken away from me.
I blogged about my 18-month wait for a wheelchair, about negative reactions in the street once I had one, about indifferent agency workers who would belittle and humiliate me in my own home.
And I blogged about identity. Who was I now? It took me many years to work that one out. I progressed to blogging about disability politics, eventually writing for BBC Ouch.
Encountering the Social Model of Disability led to a new and enduring take on my own health. The Social Model position is that people are disabled by society, not by their illness.
This discovery, which led me away from the doctors and away from reading up on ‘my illness’ had a profound effect, and marked a total shift in my sense of self. I ended up leaving the support group. To this day, I don’t read anything about ME although I am aware I still have a propensity for fatigue.
I used the wheelchair for as long as was necessary, and then put it away. I had a Motability car, and gave it back when my health improved. My condition fluctuates and is invisible, two reasons why many people are turned down for disability benefits. I’ve always had to fight for mine, like many other people in Britain today.
The Social Model also helped me conclude that I am an incidentalist. I believe more people with disabilities should be visible in art, in films, on tv, and in books. But not through an able-bodied lens or playing to the usual types. They should just be around, as they are in daily life, being themselves.
And being yourself with an illness or disability, to me, is about being who you have always been. I am my own incidentalist. I try to keep my Self at the fore, and my health as a not-very-important background detail.
For others, disability is very much part of their identity. People have different ways of interpreting who they are, and how they exist in the world. The one thing I learned from all those years of blogging is that ‘people with disabilities’ are not a single entity. People within each individual disability are extraordinarily different.
Of course they are. Of course everyone is different. And just as working-class writers will point out that they don’t have to write to a preconceived set of ‘working-class preoccupations’, so writers with disabilities should similarly be free to write about whatever they like.
We are all gloriously imperfect, contradictory, multifaceted and unique.
And so art and writing, film and television should reflect this every time disability, like class, is part of the narrative.
I am proud to be one of a group of writers who created this site to explore how ill health, disability or caring responsibilities can impact on your writing life. And I remain certain that it is negative perceptions – how disabled people are treated in society – that need tackling more than anything.
But there’s also individual work we can all do to improve how we look after ourselves, how we relate to ill health, and how we can all find new meaning in the everyday.
By offering a space away from the fast lane of social media, we hope you’ll find much to think about within these pages. And we hope a little of it helps.