Living with a hidden disability poses its own challenges, but the internet allows you to escape reality to forge a world outside of your illness or disability. Now, a new BBC documentary – ill, actually – is shining a light on the experiences of three young people living with a hidden illness or disability.
ill, actually is the brain child of Celestine Fraser (who also produced the show); the documentary looks at the lives of young people with a disability, how online communities can help, and most importantly shines a light on the prominent misunderstandings and misconceptions on life with a hidden disability.
Celestine took the time to speak exclusively with Enable Magazine about the short-film.
Where did the idea for ill, actually originate?
In the first few weeks of my first term at university, I fell very ill and was soon forced to drop out. I lost my ability to walk, talk, and developed the most nauseating fatigue that I couldn’t shake. I spent the best part of a year in bed, occasionally venturing outside for a doctor’s appointment. Any spare energy I had was spent daydreaming and watching films. I scoured the web for films about chronic illness, but there was really next to nothing out there.
So, here came the idea for ill, actually. I had the name, but I had no clue what that film was or would it look likeuntil my friend Zoe Hunter Gordon got involved. Together we developed the idea over the course of three years, speaking to health charities and developing relationships with contributors, and she directed the film you see today.
Then my co-producer Hannah Tookey came on board, as well as an amazing crew, and three very generous contributors, to whom we are massively indebted. It takes a village to make any film, but we found this to be particularly true of stories about people with chronic, often unpredictable, illnesses.
Why did you feel now was an integral time to release the film?
Over the past few years, talking about mental health has become increasingly less taboo, and TV and film has been getting better and better at representing mental illness in an honest, complicated way—which is obviously fantastic! But now when you mention invisible illness, people’s instinct is usually ‘Oh, like anxiety?’, which says a lot about how we still understand physical disability in a very simplistic way, as something that needs to be seen: a wheelchair or a guide dog.
We keep hearing that audiences at the moment are hungry for diversity, so I think it’s about time that we see more stories by and about people with physical disabilities on our screens.
ill, actually is also about online culture, and how young people with chronic illnesses use social media in 2019. Our film was commissioned as part of the Born Digital season at the British Film Institute which celebrates the thirtieth anniversary of the internet.
It’s easy to dismiss social media as inane and attention-seeking, but for marginalised communities it can be a lifeline. Our three contributors are essentially entrepreneurs, using the internet in imaginative ways to access resources that would never have been available to them ten or fifteen years ago.
What do you hope the general public will understand about hidden illnesses or disability from your documentary?
I hope that by getting to know Ben, Jameisha and Bella through our film, the audience will see that disability doesn’t look any certain way. Ben looks like a superhero; Jameisha is beautiful and twenty-three; Bella has the ‘perfect’ body. All three look young, attractive, and ‘healthy’ – I hope that this translates in some way in the real world into encouraging people to imagine strangers a little more complexly: whether that’s withholding judgment when you see someone who looks able-bodied using a disabled toilet or parking bay, or being aware that the person you least expect might actually really need your seat on public transport.
And ultimately, I think that we can all relate to the old cliché that you can’t judge a book by its cover: we all have messy, complicated lives going on behind the glossy facade that we present to the world.
But none of us want to have hide a part of ourselves, we just want to feel seen and understood.
A section of your documentary speaks to Bella, where she shares an experience of a man stating: “My friend would push me off a cliff if I was in a wheelchair.” Not only must this have been hard to hear for Bella, it was a difficult watch. Why was it important to highlight this prejudice within the documentary?
It’s a shocking moment and it was quite revealing to hear the audience’s live reactions at the BFI premiere; some groaned in sympathy, and others giggled nervously. Bella’s revelation clearly made a non-disabled audience squirm in their seats. What was interesting to me was, why? Why does her honesty make us so uncomfortable? Maybe because it’s easy for people to think that these kinds of experiences are told as Chinese whispers, that they’re myths that don’t actually happen—we’re all guilty of thinking ‘this doesn’t happen here’ or ‘not in this day and age!’
But every person with a disability that we’ve spoken to over the course of production has had a similar story to tell. And I don’t think that these prejudices usually come from a malicious place, just a place of ignorance.
Faced with something they haven’t seen before, people panic, feel the need to fill the silence, and end up saying the wrong thing. The man probably thought that he was actually complimenting Bella, in some roundabout way: that she was ‘brave’ and inspiring for simply staying alive.
But maybe this man’s comment is so shocking because it’s just so far removed from Bella’s actual experience: sure, her life may be different from his, but it’s her own and it’s good.
How can the online community support people living with a hidden illness or disability?
We take it for granted, and it’s easy to attack it, but the reality is that over the past ten or fifteen years, the internet has had an immense impact on the daily experience of what it feels like to be ill. We go online to read drug reviews, to educate ourselves about our – sometimes rare – conditions, and to connect with people all over the world who are going through the same thing.
In real life, it can feel like you’re the only young person on the planet who is ill. But online, there’s a massive, supportive community of people with chronic illnesses who collectively call themselves spoonies.
Ben posts selfies and fitness videos on his Instagram, inspiring kids and young people with cystic fibrosis to see that there: “Is a good side, and I’m living the good side”. He looks like a superhero – Thor – and he proves that having a serious chronic illness and achieving the body you’ve always dreamed of, are not mutually exclusive.
Jameisha finds that she “communicates best” through the vlogs that she posts online. She runs an online platform called You Look Okay to Me, which provides community and support for people with chronic illnesses, so that they feel less alone, while also trying to educate people who are non-disabled. Her content is incredibly honest, and she’ll share the bad days as well as the good.
Meanwhile, for Bella, the internet provides an escape from her real life. She’s a cam girl: she posts sexy photos and videos in lingerie, but she remains anonymous and her fans have no idea that she’s ill. In real life, her mobility is limited and she uses a wheelchair, but when she cams, she enjoys the fact that she’s not seen as disabled: she looks ‘healthy’ and, as she puts it: “Hot as f*ck”. Not only does camming allow her to work lying down, but it makes her feel empowered and desirable.
Has going online helped you, or someone you know, to find solace away from the challenges of living with a hidden illness?
I know someone who met her now-best friend on a Facebook support group for young people with chronic illnesses! Personally, I’ve never really had the guts to speak in much detail about my own illnesses online, so I really admire our contributors for being so vocal and unapologetic about their experiences.
It definitely wasn’t the purpose of the documentary, but on a selfish note, it’s actually been incredibly inspiring talking to all these young people who are so involved in activism – it’s helped me to understand that my disability is not a character flaw.
Before making the film, I didn’t really know any other young people with chronic illnesses, and I didn’t feel it was ever really talked about – but here we had these incredible contributors and an amazing supportive crew, and finally it felt like we’d built our own little community. In a weird way, it’s been a kind of therapy.
Are there plans to present the documentary in wider circles?
We were very lucky to be given this huge platform to talk about disability and online culture, and it’s incredibly encouraging that the BBC and BFI had faith that this topic would appeal to the wide public. After its run on BBC iPlayer, the film will still be available online on BFI player, and it will then – most excitingly – be held forever in the BFI archive!
Later this year, we hope to take it to film festivals. And we would love to make a longer-form iteration ofill, actually, sharing the stories of more of the many interesting people we didn’t have the time to feature in this short film.
Having watched the film personally it is an intriguing and compelling watch. As the producer, why would you advise people take the time to watch ill, actually?
I hope people will watch ill, actuallyto understand that disability can look any number of ways. In our lives we’ll sooner or later all love someone who has a chronic illness, so I don’t think that talking about disability is even about talking about a minority – I think it’s as universal as it gets. And the film is only 12 minutes, so there’s really no excuse.