"In a society where we have thankfully stopped asking people to ‘black-up’ for roles, why are we asking people to ‘crip-up’?"
At 6.30am this morning my alarm went off as usual.
I jumped out of bed, hopped in the shower, brushed my teeth, got dressed and went downstairs to make myself a coffee.
At 7.30am I left the house and jumped on the 207 to get to the Tube station. I ran up the stairs to the platform and squeezing into the packed train, receiving the usual tuts, spotted some eyes rolling and heard some disgruntled groans as I pushed my way in.
I used to take the totally mundane scenario of my journey to work for granted every day, never giving it a second thought. I’d rock up at meetings never thinking about how I might get in or out of the building. There’s always a way, I used to think. But actually there isn’t.
Learning from Jess
That’s what I’ve learned in the last six months thanks to a pretty cool woman called Jess Thom.
Jess has opened my eyes to a world which is great for me but not so great for her or for any of the world's neuro-diverse population. Jess lives in a world which hasn’t considered her needs in the little things we do every day. A world which still refuses to see that neuro-diversity is what makes us interesting, a world which refuses to understand that disability isn’t a dirty word.
I won’t try to describe what Jess’s mornings or days are like because I haven’t lived them. Instead I invite you to engage with Jess by watching a film we have just made together called Touretteshero: Me, My Mouth & I, which airs this Saturday.
Jess Thom in Me, Myself and I
In early discussions about the film Jess talked a lot about how disability is all too often misrepresented in the media and how she’d like this film to be made differently. Definitely NO clichéd violin or piano music against a patronising voice-over, telling us how ‘brave’, or ‘inspirational’ Jess is for simply getting out of bed in the morning ‘despite her disability’.
From the outset we were spoilt with being able to film with an incredible cast of people from BSL (British Sign Language) interpreters, to academics, to people with lived experience of disability. From members of parliament to childhood hero MC’s.
The messages coming through were loud and clear. Messages like, “If you’re disabled, when do you ever see yourself represented on stage or screen?” It’s a well-known fact that a very high percentage of Oscar-winning actors are non-disabled people playing disabled characters. In a society where we have thankfully stopped asking people to ‘black-up’ for roles, why are we asking people to ‘crip-up’?
As Jess says herself: ‘there’s this perception that to present disability is just about presenting impairment. Eddie Redmayne pretending to be Stephen Hawking is not representation of disability. I think disabled people will naturally bring their lived experience to roles that they undertake and you will get a broader reflection rather than just mimicry.”
Jess takes on the role of 'Mouth' in Samuel Beckett's play 'Not I'
The Social Model of Disability
I’m ashamed to say I knew nothing about the Social Model of Disability before I was introduced to it by Jess.
In my ignorance I simply hadn’t considered that disability is caused by the way society is organised, rather than by a person’s impairment or difference. And that when barriers are removed, disabled people can be independent and equal in society with choice and control over their own lives.
In one of the interviews in Me, My Mouth and I, Jess chats with disability activist, Silent Witness actor and comedian Liz Carr about how, as wheelchair users just getting around town is near impossible:
Jess: "You and I can’t get on a bus together. We can’t move in packs."
Liz: "We can’t take over the world, can we? If we do we’ve got to wait for the next bus."
Jess and Liz in Me, My Mouth and I
A New Perspective
Every time I get on the Tube now I’m acutely aware of just how hard it is for Jess to travel across London with ease or even at all.
There’s no squeezing into a packed carriage, not just because of attitudes and impatience but because the actual lift to get to the platform either isn’t working or isn’t there! My awareness of accessibility, not just for Jess but for anyone else who isn’t as mobile as me, has become heightened by this experience.
I could write endlessly about the lessons I’ve learned by making this film and getting to know Jess. From having my eyes opened up to a world I had ignorantly not considered to how it has changed the way I approach the way I work as a filmmaker. Tomorrow morning when my alarm goes off at 6.30am I’ll think about a world that’s easy for me but not as easy for all.
Thank you Jess Thom for opening my eyes. You really are
an inspiration the coolest ;)
Touretteshero: Me, My Mouth and I premieres in the UK on BBC Two, as part of the broadcaster's Performance Live strand, on Saturday 21st July at 10:45pm
Find out more about Jess and her work here.