Resist The Status Quo

I wrote, directed and – oh yes! – starred in my first play aged 10. There’s a photo of me looking tragic as the young Lady Jane Grey, queen for nine days before being sent to the tower and beheaded. (And, yes, we showed the beheading.)

In the background, hitching up her trousers, is my then best friend. The friendship foundered a few months later (I’d accidentally short-changed her on a Xmas present, maths never having been my strong point). Hauling me round the playground, she launched me on a whole new stage of impairment and disability.

Teens and 20s were rough, tough, discrimination-filled years. Battling for education, battling for medical treatment. Lots of drama, but theatre disappeared into the background. I lived in a rural area, so it was years later that I ‘discovered’ film.

Instead, I went to medical school, partly I think in an attempt to do it better than the many medics I’d been subjected to over the years. One year in and the medical school removed my access arrangements, telling me I had to function in the way that all the other students did or leave the course. Now I look back and think I had a lucky escape. At the time, I was devastated; my direction in life and understanding of how the world worked vanished overnight. Brought up with the idea that determination made everything possible, I found that life was more complicated than that and often not fair at all.

A few months later, very lost, I went on a two-hour disability equality session and heard someone putting into words my experiences of the past decade. Suddenly what I had always known, deep down, was confirmed.  It wasn’t my body that was responsible for all my difficulties; it was external factors, the barriers constructed by the society in which I live.   I was being dis‑abled ‑ my capabilities and opportunities were being restricted ‑ by prejudice, discrimination, inaccessible environments and inadequate support.  Even more important, if all the problems had been created by society, then society could also un‑create them.  In that moment, my understanding of the world and my place in it changed, and so did my direction. Probably more than anything else, I have been shaped in character and activity by discrimination and, crucially, my response to it.

I became a disability equality trainer and consultant, working with disabled and non-disabled people to create change. I became an activist, chaining myself to inaccessible buses alongside others from my community. We discovered our lives weren’t about impairment, but about ‘out there’ and our place in the world. Coming together, we found solidarity and we created change. And whilst I’d seemingly turned my back on drama, I look back and think what is training, direct action or being a disabled person, if not performance.

Alongside all this, I made occasional attempts to enter media work, but the doors were firmly closed and I let another dream go.

Then my Dad gave me a book about women anti-militarists. One of the women, Helen Keller, shared a name with that saintly creature I’d been told about at school, the blind and deaf child whose triumph over adversity we were all meant to emulate. This Keller, though, was a writer, a poet, a political thinker so left wing that she left the Socialists, an activist under surveillance by the FBI. I realised the school version of Helen Keller had been a PR job and I wanted people to know about the ‘real’ Helen Keller, the one who was grappled daily with discrimination and maintained the courage to hold to her beliefs. I approached a filmmaker friend, Ann Pugh, and asked her to consider doing something with it. She agreed, but only if we worked together. We gained a commission from Channel 4 and so began my film career.

It was a rollercoaster ride: with no film experience, I found myself filming on two continents for a major television strand. I learnt so much, I struggled with huge gaps in knowledge and experience, experienced disability censorship that had me within an hour of resigning. And I fell in love with the medium, like a shock of something that had been missing without my knowing it.

The Real Helen Keller taught me a lot, including that my work doesn’t ‘fit’ the mainstream. Too unsafe for commissioners and too political to guarantee ratings, I decided to go independent, setting up my own production company, Roaring Girl Productions. The struggle remains in securing finance and distribution for my work, so every film takes years to get off the ground and is slow to reach an audience. But it does seem to get there with time and doggedness. What I gain is the freedom to say what I want to say through my work.

The UK film industry is about a quarter century behind the arts sector when it comes to inclusion of disabled people, whether as practitioners, audience or subject matter. Being a disabled filmmaker might just be viable within the mainstream, but to run inclusive productions and to make political work about disabled people does not sit easy. It’s taken a decade of film work for me to understand the medium, the industry and the constraints enough to be able to throw the rule book away. There’s a kind of career ladder in film, just as in any other sector: make your first film, make another more challenging film, always have the interests of the next film in mind influencing what you’re doing now. The past year has been really tough, but I’ve realised I can’t – won’t – stick to the formula. I’ll make the films that compel me, that stories that demand to be told.

So, instead of working with the next film in mind, I completed an animation a few months ago and am now working on a film-based installation – completely contrasting projects in style, scale, story, almost everything. What I’ve realised is that all my projects have in common underlying themes: identity, resistance, survival and running through it all, joy in life. The themes of my films, I guess, are the themes of my life.

I write and direct because I have stories to tell. Fact and fiction, I want to explore and represent the world around me. I work with a medium based on sound and image which, at its best, is virtually tactile. Creatively, I want to make worlds so vivid that the audience steps right into them. As an activist, I use the stories and the medium as a tool for change. Ultimately, I want to tell convincing, compelling stories beautifully – but with a message so integral that, to an audience, it simply makes sense.

In film, I work for direct change by making my productions inclusive (disabled people in front of and behind camera) and by trialling new approaches to audience access (audio description, captioning, etc). Indirectly, my creative activism takes place by representing our lives. I want us, as disabled people, to recognise our selves, to gain the strength and solidarity that comes through that, and I want others to witness our lives and gain direction for change.

I loved acting as a child. With hindsight, probably I should have studied drama, not medicine, but then that would have been a whole different story! More and more as I work with actors, I admire their courage – to dig so deep, to reveal themselves, to permit their vulnerability to be so public. Perhaps some day I’ll be brave enough to go in front of the camera. For now, I feel I’m on show enough in the rest of my life and it’s a relief not to be a spectacle. I’m sure the writing and directing is a desire to construct a world my own way.

For the past four years, I’ve been on a NESTA (National Endowment for Science, Technology and the Arts) fellowship, exploring new ways of combining my creativity and activism. It’s been a wonderful experience to experiment with my work and pursue my dreams and a joyful reprieve from spending a huge proportion of my work time chasing funds. Unfortunately, this comes to an end in September, so I’m already back to rummaging for finance to complete the current project and then get the next one of the ground.

At the moment, I’m working on Resistance, a film-based installation about the Nazi mass-murder of disabled people and its contemporary echoes. I’ve just entered post-production on the short drama that will form the core of the installation, about a woman in an institution who resists. The drama will be released some time in the autumn and the larger installation will begin its UK tour of galleries, museums and other settings from January 2009, with the hope subsequently of taking it internationally.

The last few months have been disturbing and challenging: visiting institutions in Germany where the killings took place and attempting to reach some understanding of the how and why of it all, followed by filming where I became a kind of witness to the eugenics programme and began to recognise the layers and layers of complexity. Working with other disabled people throughout the process has made the contemporary relevance of it all so clear – the way the values that underpinned the Nazi programme are still present, giving rise to a range of situations from the abuse of disabled people’s parking to the current rise in hate crime. There’s an urgency and commitment from everyone involved in the project which I’ve never experienced before which spurs me on to bring it to an audience.

I’m planning to take some time off once the installation is touring (I can dream!). But, longer term, there’s a feature film I’d love to make in which a boiled egg sets a group of disabled people in an institutions on a journey of political awakening…