A new wave of disability media

Dear Debriefers, 

Around the world, disabled writers, filmmakers, musicians, artists and creators are leveraging new media and technologies to create an art of pride and resistance. We’re surfing a wave of disability media.

I first dipped my toes in these waters eight years ago, when my own experience of chronic illness inspired me to make a short documentary, ill, actually. Since then, I’ve forged a career in disability media in the UK. I’m a writer and filmmaker, and I work with clients as a copywriter, disability consultant and trainer. My films have been programmed on the BBC, and my writing has been published in VICE. 

Yet I often feel lost within this work. With my disabled artist friends, we talk about access barriers, burn-out and the pressures of having our work politicised. But there is not yet much of a wider conversation about the expectations placed on disabled artists to live up to the demands of activism.

In this edition, I reflect on how we are being swept up in this new wave of disability media. What sorts of stories are being told? What’s the relationship between art and activism? Can art end ableism?

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Reader support allows Disability Debrief commission articles like these. With thanks to William for a new contribution.

I’m very happy to welcome Indigo Ayling and their illustration to the Debrief. We’ve worked together previously, and as a disabled artist, they are alongside me riding this wave in their wheelchair. – Celestine

“You do it because you love it”

In my early twenties, I dreamed of being a filmmaker. After graduating from university, I did my best to get work experience, but internships and first jobs were invariably inaccessible to me. Job descriptions referred to long days and early starts, driving long distances and lifting heavy boxes.

Once, at an information session about short film funding, hosted by an acting school, I arrived late to find fifty people gathered in a circle. They were –inexplicably– doing star jumps. Seeing me bewildered, they told me to join in, explaining they were ‘warming up’. Back then, I had neither the language to explain my illness nor the courage to stand out as different. So I did as I was told, performing my star jumps and saving my tears for the journey home. I spent the week in bed recovering.

On another afternoon, between bouts of vertigo, I made it to the British Film Institute (BFI) for a talk by a well-known British director. His advice to the young audience was to expect long hours, exhaustion and to slowly work your way up. ‘This is what it’s like,’ he laughed, ‘You do it because you love it.’

After the talk, the audience swarmed the director. But I slipped instead to the back of the room and found the event’s moderator. I told him I had a chronic illness, that I could never be a runner. Did he know any ‘people like me’? He was taken aback, but kind. Later he followed up to put me in touch with the BFI’s Disability Screen Advisory Group: a group of disabled filmmakers who met up to discuss disability inclusion in the film industry.

Meeting these people changed my life. They introduced me to the social model of disability. They taught me that access was a right. They showed me the power of collective identity. I was plunged into rooms with more wheelchair-users than I’d ever seen in one place, into conversations about disability representation in film. In 2020 and 2021, the group expanded to include more filmmakers. Some of us had non-visible disabilities, some were autistic, some were people of colour or LGBTQ+. Together we worked on Press Reset, a campaign calling for better representation within the film & TV industry.

The disabled new wave

What me and my friends are seeing in London reflects a wave of disability media all over the world. In her recent open-access book Disabled People Transforming Media Culture for a More Inclusive World, Beth A. Haller argues that today’s disabled artists are changing perceptions of disability and shaping mass media and culture.

Haller proposes a few reasons for this. First, there’s a growing, global conversation around diversity, equity and inclusion, with a hunger for ‘underrepresented’ voices. Secondly, new media and technologies have democratised video production, making storytelling accessible like never before. Meanwhile, disabled creators have flourished on social media, showing us glimpses of their daily lives and destigmatising difference.

With the rise of streaming platforms, the way we consume content has also changed. By using a subscription- rather than ad-based model, streamers are able to take bigger risks and commission original content. Disability stories are being funded, as well as recognised in awards seasons. On Netflix, recent disabled-led titles have ranged from American disability rights documentary Crip Camp to Zambian drama about life with albinism, Can You See Us?. Disabled characters are gaining their own complex storylines in some of the platform’s biggest shows.

Of course, disability media isn’t only being made in the Anglosphere. Whether it’s K-pop or carnival, the Debrief library shares artists and creators making disability media all across the globe. We can look to Argentina, where 2021 TV series Four Feet High explores sex and relationships from the perspective of a 17 year old wheelchair-user. Or to Uganda, where SignsTV provides news bulletins in sign language.

I wonder if the focus of the disability movement has shifted. As accessibility has become more enshrined in our laws globally, has our focus moved from legislation to representation? Are our leading activists now more likely to be holding a camera to the world than holding a placard at a protest?

Perhaps we can even see some of this transition in the life of Judy Heumann. Her leadership in disability rights came out of fighting a legal case, and she played key roles in US disability legislation as well as the UN convention. And in her later life, she embraced the power of storytelling, pouring her energies into social media, a documentary, a memoir and a podcast.

Art for empathy

In his 2021 MacTaggart lecture, British screenwriter Jack Thorne spoke urgently to the camera. With teary eyes, he called for better disabled representation in TV and film. We were in the middle of a pandemic in which the UK government reduced disabled people to their ‘underlying health conditions.’ 

Thorne argued that authentic onscreen representation could help reverse this harmful narrative: TV was an ‘empathy box, in a corner of the room.’ He sees it as a vital part of his work to make art to ‘further the disabled cause’.

Of course I agree that art can create empathy. The idea for my first film ill, actually came out of a  need for my friends to understand me. I was 19, ill and stuck in bed, and they were at university, partying. By making a documentary about young people with chronic illnesses, I hoped I could show them what I was going through. 

But making that film showed me that art would never be just about my personal catharsis. To our amazement, call-outs for contributors were bombarded with interest. We were amateur filmmakers, and yet our every decision was evaluated like we were proposing a crucial new piece of policy.

‘Why are you focusing on disabled people under 30, when older people are more likely to be disabled?, they posted. ‘Why are you making a doc about people with invisible impairments, when hate crimes are rising for people with visible ones?’

Making art about disability comes with complex questions. Along with those, duties, ethics and responsibilities.

Ending ableism

The questions increased when I started production on Better, a short fiction film with a bigger budget and funding from the BFI. With so few authentic, complex disabled stories out there, we felt pressure on our short film to do it all. As if we could undo decades of misrepresentation in fifteen minutes. As if we could end ableism, if only we put the words in the right order. 

Better is a film is about the tension between two sisters, one of whom has a chronic illness. We tell the story from the point of view of the non-disabled sister so as to more effectively make the point that disabled people don’t need to be “fixed” or get “better”. As producer and associate writer, I was conscientious that every small decision would be meaningful: from the production design of the disabled character’s wheelchair to the colour of the pills she takes.

We are consistently asked why the film centres the non-disabled sister. And some questions get more personal. I am regularly asked (usually by other disabled people): ‘What condition do you have? What about your director? And the lead actress? Is she disabled? Or is she ‘cripping up’?’ The questions come from inside my community, yet the experience reminds me of when I was interrogated by the Department for Work and Pensions about my application for disability benefits.

I agree that art has a social responsibility. But I’m not sure what grilling disabled artists achieves for disability justice, and I worry that characters summoned from checklists by activists will only ever exist in two-dimension. Besides, if we only write narratives that ‘further the disabled cause’, don’t we risk leaving other narratives behind? If we only write about disabled people who are sassy, empowered or politically engaged, what happens to the disabled people who are meek, self-pitying or assholes?

Under the spotlight, without support

I feel sensitive to judgment from inside my community, and I’m also dealing with a systemic lack of support from the people with the power. I’m sandwiched between online activists and inaccessible institutions.

In 2019, my film ill, actually was commissioned by a film fund run by the BBC, BFI and an indie production company. The film was one of 11 projects selected from 450 applications. Our execs thought the idea was interesting and original – they too wanted to watch a film about young disabled people and online culture. We got the greenlight. We were thrilled. 

With only eight weeks from commission to delivery, I knew it would be intense. But since we were making a film about disability, I assumed that at some point someone would check in with me about my access needs. But my execs’ approach to access was, at best, reactive. An accommodation was only made when, after working myself to exhaustion, I sent them a distressed, dramatic email from the waiting room of accident and emergency.

Organisations and institutions want to make disability media (or, if we’re feeling cynical, to be seen to be making disability media). But they’re still so often unequipped or unwilling to create a working culture which is accessible for disabled artists. 

Last November, I won the Shaw Trust’s Disability Power 100 award for the UK’s ‘most influential disabled person in media and publishing.’ I was honoured by this recognition of my hard work, and grateful for the visibility. But as I published a celebratory Linkedin post, I couldn’t help but squirm. The glamorous pictures of me on stage accepting an award were in dramatic contrast with my everyday life as a disabled freelancer.

“Like I didn’t have a choice” 

As with many disabled creatives, one of the reasons I freelance is because it’s more accessible for me. My working days are productive but short, wedged between physio sessions, resting, doctor’s appointments and medical admin. It’s often really hard. I don’t get sick pay or holiday. Projects come in at the last minute and require a short turnaround. When I get a new client, my access needs are frequently ignored. People take ages to pay me, and I don’t get paid enough.

At the same time, I love my work – I really do. I love writing articles, interviewing interesting people, making films with brilliant collaborators and working with clients who are passionate about what they do. I find disability endlessly interesting.

But occasionally I wonder if I’ve had a choice. Could I have been a writer or filmmaker, if I didn’t make stuff about disability? Would I have been given those (minimal) access provisions, if I’d I wanted to make films about something else? Or would I have got stuck at the star jumps? 

I recently watched Reid Davenport’s poetic and personal documentary I Didn’t See You There. Near the end of the film, Reid asks his mother what she thinks of the fact that he’s a filmmaker. ‘You’re artistic,’ she says, ‘And it’s the expression of your art.’ We sense it’s not the whole story. ‘Did you see how I became politicised over the last ten years?’, says Reid. ‘Sometimes I feel like I didn’t have a choice. Like, I couldn’t get a 9 to 5.’

A disabled gaze

Despite my frustrations, I’m hopeful for the future of disability media. Over the last year, disabled artists have been making new and exciting work which explores many of the same questions I’m asking. 

My friend Emily Simmons recently set up Crip Cinema Archive, an archive that seeks to document disability on screen. The archive’s definition of crip cinema is open and inclusive – it doesn’t point fingers or gatekeep. It acknowledges that great art is born out of different conditions, and resonates for different reasons. Crip cinema might be defined only as a shared sensibility or perspective – a disabled gaze. As Peter argues in the Debrief’s disability lens, ‘a lived experience of disability brings us down to earth.’ 

Recent documentaries find fertile ground in exploring point of view. In I Didn’t See You There, Reid shows us Oakland from the vantage point of his wheelchair: his camera shaking as he navigates the changing textures of the tarmac. In her acclaimed feature documentary Is There Anybody Out There? Ella Glendining searches to find someone else with the same rare disability as herself. In unseen by Set Hernandez, we follow a blind, undocumented immigrant in the United States through an out-of-focus lens.

None of these films tries to reverse every harmful historical trope. They simply show us what their protagonists see (or don’t see) from where they’re standing (or sitting). They’re personal and they move us.

Change isn’t always a tidal wave

I’ve yet to find a way of working that doesn’t make me ill. But for all my fatigue, somehow I keep making things. Because I want to, have to and I don’t know how to stop. 

I know that art won’t wash away all that’s wrong in the world. We still need policies, rallies and picket lines. We need campaigners who chain themselves to buses and activists who evacuate disabled people from warzones. Art isn’t a replacement for activism.

But even if art won’t end ableism, I’m confident it changes us. When we’re moved by a work of art, we feel it in our bodies. We stand transfixed in front of a painting, turn the last page, or leave the cinema into daylight – and something inside us has shifted.

I’m learning that change isn't always a tidal wave. It’s the way the water ripples, after a raindrop. 

Celestine

Acknowledgments

Huge thanks to Peter for inviting and encouraging me to write this piece, and for his thoughtful edits which turned my messy emotions into something readable.

Thanks to the members of the BFI DSAG and Press Reset campaign, for showing me that a career in the arts was possible. Thanks to Zoe Hunter Gordon for being the best collaborator. Thanks to Indigo Ayling for the beautiful, hilarious illustration of me riding a wave on my scooter. Thanks, always, to my disabled artist friends. 

Many thanks to the readers and organisations whose support makes this work possible.