Change the narrative

Change the narrative

"Where do you get your ideas from?” The interviewer smiled. And that’s when it happened. The pressure that had been building inside my pelvis since we had taken our places on stage, surged. I tried not to react, aware my ankles were already wound like a contortionist’s around the legs of the bar stool I was precariously balanced on. Sweat prickled my brow. I hoped I disguised my wavering voice within my enthusiastic stage persona, as I felt
my hip dislocate. Right there in front of 200 book lovers.

I have a rare connective tissue disorder called Hypermobility Ehlers Danlos Syndrome (hEDS), and my arch nemesis is bar stools. Beloved by bookshops, festivals and all events where organisers want to raise up the authors people have come to see, bar stools taunt my fragile body with their instability and lack of support. A multisystemic omnishambles, hEDS symptoms include: easy injuries and dislocations, mobility restrictions, chronic fatigue and having a condition that is tricky to pronounce when drunk. And yet, as a sufferer of an invisible condition that takes hours of daily work to manage, unless I’m using my walking stick, I pass as non-disabled.

To begin with I was reticent to mention my disability to work colleagues, assuming people would write me off as an unreliable author. Ironically, like a number of disabled creatives I know, I often push myself longer and harder than non-disabled people because I fear being seen as weak or not good enough. Neither are particularly healthy expressions of internalised ableism, but the latter is at least beneficial to my employers. The great thing about a writing career is its flexibility. I can slot physio, health appointments and strategic pacing naps into my self-managed working day. And apart from obvious compromises and risks to health, a number of disabled writers I know have thrived during the global pandemic. Online meetings suit many of us (though not my deaf friends) and, used to having to adapt, we came back fighting harder and quicker than many who perhaps hadn’t faced challenges to their health and work before. Could our disability actually be a source of strength?

Writers, agents, editors, bookshop owners and many others are repeatedly willing to lend a hand when I do confess my condition. Whether it’s facilitating an extension, sourcing a hotel room with a bath to recover my muscles in, finding me a chair at an event (amusingly sometimes by turfing someone else out of it), or with offers of paid work if I’ve been worried about my growing physio bills, publishing is full of good eggs. And having a disability helps my craft. I see things from a slightly different perspective. It gives me a unique insight, a special voice.
It gives me an edge.

Publicists are delighted to work with disabled talent: imagine all the articles you can pitch around your health condition! Health-themed publicity articles can be great for raising awareness and breaking down preconceptions. But the flip side of “using” your disability for publicity fodder is that you’re betraying all your intimate medical details to the world. Unfortunately, for all the good people, there are still some who will try to fit you into their existing narrative of what it is to be a disabled person. Inspo porn, origin stories and pity pieces that cast you as the poor little brave disabled writer are at best amusing (if read out loud in a stupid voice, with friends who know you are more than your walking stick and wonky limbs). At worst, they’re hurtful, damaging articles forever linked to you on the internet. I was aware of one catastrophically misquoted interview, when family members read it and started calling my mum to say they were sorry I had tried to kill myself. I had not tried to kill myself. The interviewer obviously got carried away with the idea of a disabled girl struggling against all odds. Or perhaps they assumed if they had hEDS they would wish to end things? Pfft! I can dislocate my hip in front of 200 people with barely a blink, and only need a steadying hand to get down off a bar stool after. You wish you were as badass as me.

Other people’s assumptions are still my main reason for pausing before revealing I have a disability. You may not have worked with someone who is disabled before, and well-meaning politeness may make you feel awkward addressing this, but please just ask if they have any access requirements? Listen to what the answer is. Act accordingly. There are myriad disabilities, with myriad access requirements, but one thing is certain: the disabled person in question is the one who will know best what they need.

Nowadays I don’t regard my request to have a chair with a back on it to be any different from my preference to not have ice in my drinking water. I now recognise I am disabled more by the barriers that exist in society (those damn bar stools), than by my actual condition.

The only thing that’s wonky is other people’s mistaken beliefs.

Angela Clarke is a bestselling novelist and screenwriter. She is the author of On My Life (Hachette, 2019), Trust Me (HarperCollins, 2017), Watch Me (HarperCollins, 2016), Follow Me (HarperCollins, 2015), and the humorous memoir Confessions of a Fashionista (Penguin Random House, 2013).