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Living with Invisible Illness: is there a Future of Work?

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Living with Invisible Illness: is there a Future of Work?

I attended the premiere of the BBC Arts and BFI’s series of films Born Digital, a new collection of short films commission...

9 Minutes Read

I attended the premiere of the BBC Arts and BFI’s series of films Born Digital, a new collection of short films commission by BBC Arts and the British Film Institute (BFI) to mark the 30-year anniversary of the world wide web.

All 11 short films were created by digital natives and I was lucky enough to get the chance to chat to one of the filmmakers, Zoe Hunter Gordon, who directed ill, actually.

I was blown away by the content across the eleven films, in particular the recurring theme of the Future of Work. I had a great time discussing this with Zoe…

CS: First off, thank you for taking the time to talk with me. I’m excited to discuss your film, ill, actually, and must say how thought-provoking the piece was in relation to the Future of Work.

For our readers who haven’t seen the film (yet!) – could you give a quick overview of what your film is about and what motivated you to create it.

ZHG: ill, actually is a short documentary exploring the challenges of being young and chronically ill in a carefully curated online culture. A real life ‘superhero’, a YouTuber and a camgirl explain why they choose to share - or hide- their chronic illnesses online. I was interested in the freedom that the internet gives us to define our own identities: online you can be anything – why be ill? The film was born out of the experience of my producer, Celestine, who is invisibly ill (aka, not visibly disabled). With a BFI grant commemorating the birth of the internet, and my interest in vulnerability and identity as a director, ill, actually was born!

CS: To what extent did you consider the focus of this piece to be “work” (the concept of work, jobs, employment)?

ZHG: ill actually is ultimately a film about identity, and as work plays a huge part in forming our identity I think that the film can easily be seen in that light. People with disabilities are hugely underrepresented in the workforce, and I hope that the film sheds some light on the challenges that people with disabilities face when accessing work.

During the making of this film I was struck by the negative experiences that so many people with disabilities discussed regarding work. From being fired unlawfully, to simply being told certain kinds of jobs are unsuitable, it is clear to me that the workplace has far to come regarding accessibility. Our society places huge value on how we earn our keep, and people with disabilities bear the brunt of this pressure.

CS: Ill, actually shows Ben, who lives with cystic fibrosis (CF). He has created a successful business training people with CF and has a hugely popular Instagram presence to boot, which helps him promote his PT offering. Part of the reason for his success is that Ben defies the aesthetic norms that are inflicted upon people with CF.

I interpreted Ben’s story as an example of a career that is only available to him because of his chronic illness – which is a pretty cool concept.

The same could be said for Jameisha, who created online platform You Look Okay to Me – a place for people with chronic illness, especially invisible illnesses, to connect. It would certainly feel a bit off if this platform was created by someone without the first-hand experience of chronic illness.

Do you think that digital technologies (the internet, the web, social media) are enabling people with chronic/ invisible illness to create work that is exclusive to them?

ZHG:I think that the internet is allowing anyone who is vulnerable, be that physically vulnerable, or psychologically, to access work in a different way. As I hope the film explores, the fact that the internet allows you to define yourself and your work in entirely your own terms opens up a huge range of possibilities.

I think it’s definitely true that the internet has platformed authentic activism in a very new way, as Jameisha said during our research period – she’s not sure how her content would’ve been accessed pre-internet. Conventional broadcast timelines and structures pose challenges to artists with disabilities, and the fact that broadcasting online allows those with disabilities to make content to their own timetable and in their own way has definitely meant that artists like Jameisha are able to make work and reach audiences in a way they wouldn’t have been previously.

CS: Let’s talk about Bella (not her real name). Tell me about Bella, the work that she does and why technology was pivotal in enabling her to work.

ZHG: Bella is a cam girl: she creates images and videos of a sexual nature that she sells to clients online. Bella has EDS, Ehler’s Danlos Syndrome, and it manifests in such a way that it poses challenges to her gaining work in conventional settings. Bella finds it difficult to sit upright or to focus for long periods of time, her condition also fluctuates daily in such a way that makes it difficult for her to predict her ability to be “productive” in advance. Her cam-work gives her the flexibility that she needs, she can work on entirely her own schedule and – as she says – she can do it “lying on her back.” Bella’s condition is invisible: there is nothing visible about her EDS – and to clients she is abled, she does not disclose her condition. The internet has given her the opportunity to find work that fits around her access needs, and also allows her to redefine her identity: without technology this would be impossible.

CS: When creating this film, how important was it to you to get across the message that there is work available to those with chronic illness/ disability?

ZHG: This is a tricky question. Of course, I wanted the film to celebrate our contributors and the fact that the internet has opened up a new world of work for them – but as an abled-bodied person myself, I was also dismayed that the options for people with disabilities are currently so limited. It is wonderful that people with disabilities are creating their own unique opportunities, of course - but let’s not forget that they are currently forced to do this, most workplaces do not have the structures in place to accommodate for needs such as Bella’s, for example. I wanted the film to showcase these innovative, creative, entrepreneurial people – I think we can learn a lot from them.

CS: There are tools and technologies available today that support people with disabilities into work. As we saw with Bella in ill, actually, the flexible gig-economy model is a key enabler. Tech such as VR are also game-changers. (For more on emerging tech to support people with disability, see our article: Assistive Technologies Don’t Create an Inclusive Workplace — Committed Businesses Do)

And yet there is a steep step-change needed in organisations to make these technologies and working structures an integral part of the corporate offering. Companies need to cultivate inclusion in order to capitalize on the massive impact technology could have.

Whilst working on ill, actually, what did you discover to be the biggest barriers to inclusion that you think employers could learn from?

ZHG: I believe that the biggest barrier to people with disabilities gaining work currently is the structure of the workplace and the concept of “reliability.” If you have a condition like EDS, as Bella does, where your symptoms change daily it is impossible to be reliable in the conventional sense that we understand it. She cannot predict what she is able to achieve next week, her health makes that impossible. Accommodating for her needs requires structural change within conventional workplaces: for tasks to be delivered daily to her dependent on what she can manage. This is obviously a very tall order for employers with set targets to meet and deadlines.

I don’t really have the answer, but it’s this notion of reliability that cropped up time and time again during our research period: if employers are open to hiring conventionally “un-reliable” workers then I believe we would see more disabled people in work. To put it another way, if employers are open to creating flexible deadlines and flexible working environments (with flexible hours!) then we will see more disabled people in work.

CS: I want to take one last opportunity to say thank you for creating this important film. I hope that organisations and governments alike will be exposed to creative content like this more and more, and be encouraged to act faster and smarter on employment opportunities for people with disability and chronic illness.

ZHG:Thanks so much for watching! I am massively indebted to my wonderful producers, Celestine Fraser & Hannah Tookey and our fantastic contributors – Jameisha, Ben and Bella. There wouldn’t be a film without them.

Catch ill, actually on BBC iPlayer, along with the 10 other films that were part of the Born Digital series.


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