A few months ago Mosaic Science magazine, which is published by the Wellcome Trust, asked me to look at sexuality and disability – how, in essence, disabled peoples’ access to intimacy is sometimes hindered, sometimes forbidden and sometimes mocked. I feel really grateful that I worked on this project – but it couldn’t have been done in the way I wanted it to be done without the help and support of disabled friends and allies, and also a shift in the way in which I do my own journalism. This has changed over the last seven to eight years, as I have come to understand the concept of ‘co-production’ and the resonance of ‘nothing about us without us’. Defining those terms, loosely – as co-production relates to journalism, it means that journalists keep open lines of communication with (in this case disabled people, but it could mean, say, Romani people, or any other marginalised group that often doesn’t get fairly represented in the media). Disabled people offer feedback on the work as well. It’s a two-way process, and I think that journalism is often improved in the process, without, of course, endangering the principle of free speech. “Nothing about us without us” was coined by disability activists during the struggle for civil rights but has since been used by other groups – and, again, for the media, is a useful concept. If you are writing about a group – particularly one that is marginalised and discriminated against – it’s vital that you involve the community in the process.
But first, a bit about me…and where I fit in to the narrative.
I rarely write about my own experiences of pain and impairment (I never write about those in my own family in any detail, because they are not my own), but recently I have written a bit more about my long-term neurological condition, relatively severe and chronic migraines, as I realise, more and more, that it has affected how I live my life, constrained either by pain, or the management of it. I first had a migraine when I was 12 or 13, and was entering puberty. Being adopted, nobody else in my family had any experience of migraines and my mum thought I had a headache. I was in so much pain that I actually wrote her a farewell letter that night – I thought I was going to die from the pain in my head. She really wasn’t to know – it was only later, reading the account of migraineurs, collected by the great Oliver Sacks, where he recounts tales of migraineurs who felt as if their head would split open that I realised that this was a common, if unpleasant experience. It’s now relatively well managed with epilepsy medication (odd, but true) and I’m looking forward to the menopause with excitement (I know that sounds a bit weird) as many women report that their migraines cease after the menopause.
Migraine is my first ‘black cat’ (I’m not so much of a dog person). Melancholy is my second – perhaps, again, linked back to that childhood experience of being adopted. When I finally found my Iranian birth father, decades after searching for him, and saw that broad, generous smile on his face, something lifted – a childhood and early adult melancholy (you can call it depression if you want) that I had lived with for so many years. It comes back sometimes and my family laugh and say it’s linked to the Iranian, poetic, over-dramatic side of me. That may be true.
I don’t mind my two black cats – I’ve lived with them for so long that we are really quite comfortable with each other. We’ve settled into a rhythm with each other, and they have shaped my existence. I wonder, sometimes – who would I be – who will I be – if the migraines do leave, after menopause? I am accustomed to never going anywhere without medication, avoiding bright lights and loud noises. Those habits have shaped my identity, so what happens when I don’t need them any more?
So when I write about impairment, and long -term conditions, I hope it is with some knowledge and empathy with my fellow-travellers. I think I haven’t written about it much because my own life is OK – as I said, I have gotten used to my own black cats. But I do believe that you should always involve those who are party to a story in the making of the story, as much as possible. And you should build capacity – so often, when I write on a subject touching a particular community, I ask to write something (or make a film) with someone from the community, rather than just work alone. The next time around, I might not be necessary at all. Co-production takes time – it should mean working with people, discussing and wrestling with ideas, being challenged and then getting somewhere new with the piece of work. It’s still your work but it’s somehow shaped by those who are part of that story, in a much more authentic way.
To end, I think that the phrase: “Nothing about us without us” should be carved on the heart of every good journalist. It makes good business sense – fewer complaints – if you want to see it in those terms. But, more importantly, it’s just the right thing to do.
Katharine Quarmby 