Working online: the great equalizer.
Or is it? Getting to grips with creativity online with chronically-ill artist Jamie Wardrop
Welcome
Hello and welcome to my first newsletter!
My name is Rebecca W Morris. I am a copywriter, filmmaker and writer. I started this newsletter to talk about the largely unacknowledged ableism of the internet, which I discovered more about after pivoting to a self-employed career mostly online. The name ‘I Don’t Give A Spoon’ is a cheeky nod to Spoon Theory, a visualisation technique that many with illnesses and disabilities use to measure their energy on any given day. For more about this, and why I started the newsletter, please watch this video that I expended multiple spoons making.
Discovering the arts and its incompatibility with illness
I started my career as a performance artist and theatre director. It was during this time that I met Jamie Wardrop, whom I talked to for the purposes of this newsletter and is still one of my closest friends. We met in Glasgow, Scotland, around 11 years ago, trying to make it in the world of theatre whilst working zero-hour contracts.
Jamie headed up an amazing and ambitious project I was involved in - a collective of filmmakers, artists and performers transforming the floor of an old flag factory into an affordable rehearsal space. Rehearsal spaces for performers and studios for artists at that time in Glasgow were (and I imagine still are) incredibly expensive.
Later, I moved on to make my (mis)fortune in London, and we continued collaborating, making work together and talking regularly.
We were young and full of plans to make the world of arts more accessible, and in small ways, both of us have made steps in this direction. But there is more work to do. Both Jamie and I suffer from chronic illnesses, nowadays often helpfully referred to as, “hidden disabilities” – an acknowledgement that non-visible disabilities can hinder your ability to work or participate in social activities.
Like many others, we have struggled to come to terms with this, particularly in a field of work that is already precarious. At times, it has been a lifeline having contact with friends like Jamie; people I can talk to who understand the turbulences of life with an illness.
However, it’s time to open up the conversation…
Levelling the playing-field
The reality is that the more people involved in this conversation the better. No one, sadly, is immune to illness. It is not something we like to think about when we are well. It can leave you bedridden and lonely, watching the world go by. It has become a symbol for capitalist society’s worst fear: unproductivity.
Most people I know with disabilities have a deep empathy for others as they understand the loneliness of the struggle. They often advocate for others too as well as themselves, which is double the labour.
I believe what I speak about here resonates with both disabled and non-disabled people.
Is it enough to make “adaptations” that allow for the “participation” of disabled people?
Or is it time to think about levelling the playing-field?
If burn out and exhaustion is the standard for the non-disabled, then non-participation and isolation must be the standard for disabled people.
In this newsletter I invite you to imagine a world without either scenario.
Isolation: a Rapunzel in the desert wearing a techno dress?
Isolation is a subject Jamie returns to frequently in our chat. Jamie is a queer man who works in what he calls the “dark art” of visual and technologically-advanced light displays for theatre. Talking about his queer identity and how it interacts with his profession, he credits his “gayness” as allowing him to be “vanguardy” or “experimental” in his work, though there is an imbued sense of isolation within it.
Jamie goes on to describe himself hilariously as, “a princess in the desert wearing a techno dress and like Rapunzel, people constantly trying to climb up his hair.” He is referring to the acute loneliness of working in a vaccum, usually at home on his computer, doing the equivalent of what a small team at Pinewood studios would be working on in a professional studio.
As a result he experiences constant burnout. He describes it as feeling, “really grey or carbonated”, and a sense of stagnation trapped in that room. Whilst at a good stage in his career now, years of not enough space or income have exacerbated his physical disabilities.
He talks about the cultural failure in theatre of supporting technical staff - of whom frequently end up with chronic illnesses and disabilities. There is an underdeveloped standard of care in the industry, particularly if you are freelance, and Jamie admits to not prioritising his needs in the past because of this culture.
It actually took the pandemic and working from home every day at the computer for Jamie to invest in his own health, buying a better chair to make chronic pain more bearable.
Ableism on the internet
This brings me to why I wanted to talk about ableism on the internet. It is an unprecedented time. Most business is conducted online; creative people and artists are expected to churn out reams of digital content, have a thriving online presence, meet all the demands of their paid work and somehow advocate for themselves on top of that.
I feel it is a misconception that working online at home improves life for people with disabilities. It is a method of working with little boundaries, and the potential to burn a lot of spoons.
Whilst it is important to have the option to work online and at home - isolation and “stagnation” as Jamie put it, should not be the accepted reality of being disabled. It is the world that makes it so; it is the world that refuses to adapt.
The addictive nature of online work
Jamie describes working online as, "a bit of a furnace”, and that he must constantly remind himself not to disappear into this, “unit of metal and electricity”. He juxtaposes making art online with the work of the sculptor. We discuss how Jamie’s work is like large-scale digital sculpting, but if you were working on a big sculpture or building something in the traditional sense, you would need protective gloves, a hard hat, an assistant. All those things that help you to make the work safely.
We don’t have the equivalent of a protective hard hat in the digital world, because protecting our own mental health and creating metaphorical boundaries between work and life is our sole responsibility.
A manifesto for the digital age?
As we spoke - it felt as if we were breathing life into a new philosophy for the digital age; and it became increasingly clear to us how necessary this was. When Jamie is being employed, because his craft is so niche, he says they are, “employing some neural net divergence. I’ve integrated into my brain into this non-human object.” He talks about his experience of digital phantom pain – that now when he is on a job and a piece of technology breaks down, he feels it as a physical pain, that his brain "has decided that it is some sort of extension of his body”.
It reminded me of Donna Harraway’s feminist cyborg manifesto from 1985, in which she predicted a future of humans morphing with technology and becoming cyborgs. Yet she invented the concept to reject essentialist ideas of gender, race and order. Rather positively, Harraway imagines a future fusion of genders, humans and animals, paving the way to a new and freer understanding of our identities.
Technology isn’t all bad?
It has allowed us to achieve great things, advancements in the workplace allowing for further egalitarianism – opening new worlds for disabled people and non-disabled people alike.
Yet many disability activists have pointed out how easy the transition was to make for people to work from home during the coronavirus pandemic, after years of closing doors to disabled people who would have benefited from this.
It is important to be conscious when advancements and adaptations are only made when the wellbeing of the non-disabled is threatened.
As Jamie puts it, the more he advances in his career, the more wary he becomes of “the digital corporatist space”.
A user manual for this “digital corporatist space”?
So where is our user manual, our set of rights for working online?
Jamie and I spoke about how giving people the opportunity to vocalise their needs from the offset is a “social necessity”. We had both worked on projects in which we’d collaborated on a ‘user document’ at the start. The document enabled us to state things as simple as when or how frequently we would like to be contacted, the method of contact, and what adaptations should be made in the working space, online or otherwise.
It struck me what a simple and easy practice this would be to implement in any work setting, and the great strides it could take in combatting ableism. Yet this practice of working seems to be the exception rather than the rule.
Pull out your red silk scarf
Our chat ended with another of Jamie’s rather wonderful visualisations. We were talking about social media and the algorithm – a system that rewards our output based on how much time we spend interacting with it. For creative people it can be draining, not to mention counterproductive, given that the algorithm favours user-engagement over experimental or unique content.
Whenever Jamie feels overwhelmed, he remembers a Chinese proverb about going into a garden and pulling out a small red silk scarf. No one notices but the trees. Only you and the trees can see your personal and unique offering to the world. It does not seek approval or validation.
And of course - each and every one of us has our own red silk scarf.
Thanks for reading.
Go here to see more of Jamie’s work: https://jamiewardrop.com or follow him on instagram.
Every month I will mention chronically ill and disabled people you can show some love to or follow on social media…
I am more of an Instagrammer and less of a Twitterer, so the two following recommendations are on Instagram.
The first person is@higher_priestess. Born with a disease that impacts eyesight, they post about alt text, text descriptions and captions on social media and how to make your posts more accessible. They also regularly advocate for other disabled people as part of a mutual aid network in the US.
The second is@fidgets.and.fries. She is a great writer, posting humorous and heartfelt anecdotes about her life as a black autistic mother with two autistic sons. It is rare that we hear about the black autistic experience, and she talks about that with uncompromising honesty.
Being an advocate for yourself as a disabled person is doubly exhausting when you advocate for others too! Always show solidarity, always show love.
That’s all! See you next month folx!
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