Episode 6 of Diversify Podcast is with Libby Welsh and Jack Silver, who talk us through every day ableism. To accompany this we asked writer and actress Nicola Chegwin to talk about her own experiences navigating her way through a world lacking in disability awareness..
On the 5th December 2018, at 12.04 am, I will have been disabled for ten years. In a split second my life changed irrevocably. Looking back I can see it was a perfect storm of circumstances; each so small and insignificant that, individually, they would play no major role but together made me become the person I am.
I spent many years driving myself mad, wondering what if the traffic lights had been working, what if I hadn’t had that one shot of Baileys and a sip of someone’s wine at the Christmas party, what if I’d seen the car and the driver had seen me? For many years I kept fighting, I kept desperately pretending nothing had changed and I’d soon be normal again. I refused to believe that that one split second was my ‘Sliding Doors’ moment and I refused to be ok with the new me.
Since that night, I’ve had several of those moments. Those moments where you realise that your life has changed and your timeline will forever be split in a before and after; falling in love with, and marrying my husband, lying down on the operating table for my caesarean and meeting our miracle baby. I don’t spend my time on what ifs with those, so why torture myself with what was yet another irreversible trickle of sand in my life’s hourglass?
I’ve recently been involved in a wonderful play by Laurence Clark called ‘Cured’ that premiered at Liverpool’s Royal Court Theatre. Out of the nine cast and crew members, seven of us had some kind of disability and it was brilliant. Access requirements were put in place before we’d even thought of them, everywhere had a lift and a ramp, and even our dressing room was entirely accessible. It was so easy to just be us and to focus on our job… then I had to get on the train home and navigate a gap that would make a long jumper think twice!
The play followed a group of young, disabled people on a trip to Lourdes; famous for the one time appearance of the Blessed Virgin Mary, and waters that some dubiously claim to cure the sick and the lame. You’ll be unsurprised to hear that none of us were ‘Cured’, but the point of the play isn’t about physical healing. Those who were able bodied wanted to make us normal again, those who weren’t born disabled wanted their life back, whilst those with congenital disabilities were just there for the free booze.
In rehearsals, we discussed at length whether we’d want to be cured if some magic pill became available. For some of us, many of whom were born disabled, they would refuse; being in their chair and experiencing life the way they do has made them who they are today. For me, it’s not so simple and I can’t honestly tell you I’d refuse to take that magic pill. It’s been ten years and yet I still miss who I was. I miss dancing and running, the ability to go out when and where I want, without the fear I’d be in too much pain or too exhausted. I’d love to be the kind of mummy that can take their child to the park by themselves and sit on the floor, playing with cars. I have a feeling, however, being able to skip the queues at Disneyland will trump all that once he’s older!
At the end of the day, it’s asking the world to accept us because we’re constantly told to accept ourselves. The Greatest Showman has a whole song dedicated to it but it doesn’t stop the woman in the Trafford Centre who told her daughter I was “broken”. I remember feeling the tide turning at the 2012 Paralympics, watching thousands of disabled people singing ‘Spasticus Autisticus’ in unison as the pregnant sculpture of the beautiful Alison Lapper (an incredible artist born without arms and shortened legs) was wheeled through the dancing crowd. Perhaps now we’d be accepted as the entire country cheered on Jonnie Peacock and Hannah Cockroft to gold.
And then it’s back to The Normal’s version of normal, where you get told that the accessible toilet – that you can’t actually get a wheelchair in – is perfectly acceptable because “it says disabled on it”. I’m not even making that up, it happened to me in Buxton but it still doesn’t beat out the disabled toilet with steps going down to it for top place!
A lot of it involves people’s fear. They are afraid to talk to us, afraid that they may become us and the fabulous Samantha Renke probed this in one of her recent columns for The Metro. We are turned into inspiration porn, how brave we must be to deal with such a terrible hand we’ve been dealt. Scope ran an advertising campaign called End the Awkward, actively encouraging people to stop treating us like aliens because two-thirds of the population admit to feeling awkward around disabled people.
Broadcasters are trying to help make us more visible and have pledged to double the amount of disabled people they employ by 2020. I have gained from that and I’ve had a wonderful year, work-wise but some days it still feels like they’re hiring my wheelchair and not me! An actress once said to me that I have the “pretty version” of disability. I look like I can get up out of my chair and walk, so it’s more acceptable – more palatable. I wasn’t offended, it’s true and it’s why I’ve had so much more ‘disabled’ work than some of my friends.
There’s still a long way to go – a casting director used Tom Burke as Cormoran Stroke as an example of disabled people getting leading roles. When it was pointed out that his mutilated leg stump was CGI, I was assured he was still disabled because he has a scar on his lip from cleft palate surgery. One day we will see a disabled person on TV and they won’t register with us as someone different, one day producers won’t have an able bodied actor ‘cripping up’ but for now? Acceptance is a one way street.
Words by Nicola Chegwin