So, I knew we’d made a documentary. I’d put the very first budget together, been involved in choosing the team, chatted to camera several times and watched a number of different edits, providing detailed comments about each one. But it still felt very unreal when I saw our film listed on my TV guide.
The moment I saw it I felt incredibly nervous. What would people make of it? How would they respond? I’d made the programme that I’ve been waiting for – a programme in which I, a disabled woman, am not the subject but also a driving force within it.
I watched it quietly (as quiet as I get) at home with Joyce – we were both in matching Touretteshero “Live young, die biscuity” t-shirts, and eating Cornettos. I periodically checked that Joyce wasn’t asleep, and she wasn’t at any point. My heart swelled with joy as she roared with laugher at a tic about “a sausage dog in a masturbating tortoise.”
A few hours later and it’s now the early hours of the morning, I’ve woken up feeling sick and sore which isn’t at all unusual for me at the moment. Physically I’m having a very tough time. It’s hard to describe the on-going impact of my chronic pain and the all-consuming relentless exhaustion that’s taken hold. I’ve had to adjust my life – do less work, go out less and be cautious when making future plans.
This is the context in which we made this film, and you might reasonably expect it to have been a difficult process. But for me it certainly wasn’t, it was an absolute joy from start to finish. Nevertheless, however proud I was, it was nerve-wracking waiting for it to air.
As the film finished my social media accounts buzzed with activity. Some of the responses cut straight to my heart and took my breath away (admittedly that’s not hard at the moment given the old fluid on the lung situation) but even so, seeing disabled artists and activists I’ve looked up to for years expressing their delight at what we’d made filled me with delight.
To everyone who’s sent messages of support, encouragement and appreciation, thank you! Each one means a great deal to me.
I feel lucky not just to have made this documentary but to have done so with an amazing team in a way that felt totally right.
My message to TV channels, production companies and commissioners is ‘Give disabled artists resources, support and creative freedom, and we’ll make great TV for you’. I hope our film’s just the start and that other disabled people get to tell their stories in their own way too.
Almost as soon as the show had aired I started thinking about what I’d like to make next, so watch this space…