Paula Knight was an illustrator for over 15 years for clients such as Ladybird and OUP, and she is a published author of several children's books. An extract of her graphic memoir The Facts of Life (Myriad Editions, 2017) was shortlisted in Myriad's inaugural First Graphic Novel Competition, 2012. It’s an emotive and humorous exploration of what it feels like to grow up in a society where pregnancy is a given when facing infertility. Paula has also self-published comics.
Paula has been bedridden since 2018 as a result of Myalgic Encephalomyelitis (ME), and Postural Orthostatic Tachycardia Syndrome (PoTS). Since 2017, she has taken photos to document how she sees the world, from wheelchair to 100% bedbound living in one room. Her photos explore her exile from the outside and natural world, and her disability. Paula now requires full-time care, and her creative focus is on writing.
In this interview, Paula shares insights into her work, her life and her experiences with The Big Draw.
Images in this interview are accompanied by image description underneath which can be accessed by browser extension screen readers, such as Natural Reader Text to Speech.
Interview: Lauren Burlinson in conversation with Paula Knight
Banner image description: A scarlet red background with white text reads: Take a line for a lie-down. A conversation with Paula Knight. On the right: A photograph of a collage comic by Paula Knight. Torn sketchbook pages are piled up. Colours of black, red and white flash, in disarray. Text on the torn collage pages read: Drawing is my livelihood. I can’t draw. What… And my soul…
An extract from 'What if?', a comic by Paula Knight.
Let’s begin by exploring making art. Where and how do you make art today?
I've been bedridden for over four years. I became unable to draw at the end of 2018, so I had to find new mediums for creativity. I now write using assistive technology and voice access, but it’s not always possible. I have severe energy impairment, and, although disability aids make writing more possible on the days I have enough energy, they can never be a total fix.
Most of my visual ideas stay in my head, or are voice-recorded onto phone notes.
For over a year, I was unable to lift my phone, so I used a lightweight dictaphone. The voice files are transcribed so that I can start editing.
POTS, ME and chronic pain impact every aspect of your life and you have been bed bound for several years. What does making art mean to you?
Making art is now tied up with a chronic grieving process. It's something that I didn't expect to lose, because I’d made art all of my life and it was integral to my whole existence, livelihood and identity. I’m trying to separate it from capitalism and productivity as the moral high ground, and to think of creativity as self-care I deserve to do when well enough, without the pressure of end-product. Over the years, awareness-raising about chronic illness played a part in what I drew.
Your work is linked to Graphic Medicine. Can you explain this movement and what its aims are for anyone who hasn't come across it?
Graphic Medicine is a multidisciplinary intersection of the medium of comics, illness/ disease and healthcare. Some people use comics to teach medical students. Also, non-medical-professional comics creators tell their stories as patients and carers outside of the limits of medical settings. The latter is what interests me most: I see it as a form of resistance by which people can reclaim control of their own disease narratives and experiences beyond medical notes. Any memoir writing can do that - it doesn’t have to be comics - but comics is a unique storytelling medium, although I’ve come to realise that it’s not accessible to all readers.
People with my conditions are often treated as unreliable narrators of their bodily experience, so drawing and writing can become evidence and self-advocacy. M.E. is not widely understood in the medical and public gaze despite thousands of biomedical research papers, years of advocacy and awareness-raising. I’d like to see more M.E. stories tackled in Graphic Medicine. When I wrote The Facts of Life, it covered a timeframe when the disease was mild/ moderate/ in remission; and I was not yet in possession of its full political and medical history, nor aware of how that had impacted my (lack of) treatment and life.
Image description: Three pages from The Facts of Life by Paula Knight.
Page one: Two figures climb a wintery mountain slope. Text reads ‘Compared to the life I had envisaged, mine did feel empty at times, but it wasn’t the lack of a baby that made it so: it was the lack of full health.’ Six images are linked to a human body with words alongside them: A guitar with broken strings, ‘muscle fatigue’. A bicycle helmet, ‘zero stamina’. A bottle of beer, ice-cream cone and croissant, ‘food intolerances’, Books and a mortar board, ‘brain fog’, a record player, ‘noise sensitivity’, a runner, ‘knock-on fatigue’.
Page two: A man and a woman in jeans and tshirts smile at each other, as she pulls his t-shirt towards her.
Page three: A white woman with curly hair reads a magazine. Text reads: ‘The ‘having it all’ mantra, popularised by 1980s women’s media, was simply not backed by family policy, or in the workplace…’. A white man and a white woman are talking. Text reads: ‘By the time we were trying for children in the early-2000s.“How much paternity leave would you get?” the woman asks. “Not much!” the man replies. A white woman sits on a chair reading. Text reads: It seems that women’s value to society is often judged on their relationship to children. Women without children are stereotyped and stigmatised in ways that men are not. A dark skinned woman stands dressed in a suit holding a clipboard and a briefcase. Text reads: Career woman: For carrying out her human right to earn money. Attributed to women who don’t have children. A while woman stands with a child-shaped hole in her chest. Text reads: Childless ‘Not whole’, ‘Incomplete’, ‘Something missing’. A white woman plays with a cat. Text reads: Child free, ‘Selfish’ ‘Crazy’
Last year, you responded to a tweet that said 'creativity, collaboration and opportunity do not come to those sat at home', saying 'Collaboration can happen without meeting in person.' Can you expand on this for us?
This is an ableist statement that neglects to consider disabled and chronic illness contexts. Virtual events and meetings have opened up the creative world for many who were unable to take part, pre-pandemic. If we are to have a fair and inclusive playing field in creative industries then we must continue with online and hybrid events, while also acknowledging the existence of digital poverty. If online could happen for the needs of the majority then it can happen for those who continue to need it to join in. There’s also a huge assumption in the statement that people can sit - I haven't been able to sit up unaided for four years. It assumes laziness and apathy. Laziness is not something I see in the disabled creative communities I’m part of online, which comprise some of the most politically active, driven and creative people I’ve (n)ever met. My supine posture inside my home isn’t what stops me from collaboration - energy impairment, as well as opportunities that don’t include online options for joining in, are the barriers.
Here at The Big Draw, we love to invite people to ‘take a line for a walk’. It has been the starting point of several workshops over the years, based on a quote from artist Paul Klee, "Drawing is taking a line for a walk". This quote has since been used to inspire people of all ages to play with what drawing is, from continuous line drawings to more experimental activities.
What does the quote mean to you and how or why would you reframe it? Can you guide us through a basic drawing example using your altered approach?
I understand it as an invitation to have fun with drawing - to take the pressure out of it. It’s about being open to spontaneity and to what happens when tools meet the surface.
I'd like to introduce the idea of taking a line for a lie down - even more laid back than taking one for a walk! I tend to think of lines as lying on a page or surface. Much creative discourse is framed within non-disabled modes of thinking, and this one assumes that everybody can relate to walking and thus apply that to their drawing practice.
I can’t suggest a drawing exercise that would be suitable for all, but I've taken a few lines for a lie down while bedridden (see images). One involves rolling the end of a pen over the page. The three pencil drawings were made by resting a sketchpad on my diaphragm and trying not to lose my grip on the pencil. The drawings could be considered kinesthetic - they are traces of body and breath - evidence of life.
Looking back over recent years, COVID and the subsequent lockdowns saw us living, working and socialising from home, relying on the internet in a way we previously hadn't needed to. Globally, venues and organisations received funding and directed their budgets towards online access.
As a bed-bound artist, how does the internet and developments in tech in general impact your creativity and ability to connect with others? Why is it vital that we keep these avenues of communication and access open? What else would you like to see developed using online platforms?
Some people have always needed technology for accessibility, and always will, pandemic or not. Pre-pandemic, I took part in publicity events for my book by sending videos and dialing in for Q&A. My editor also spoke on my behalf at some events. I had to figure it out for myself and most people were amenable, although I missed out on opportunities that weren’t accessible at the time, only to see them become accessible a couple of years later.
One of the problems is the notion that the public sphere equals the physical world. I continue to require technology to access the public sphere, but my world indoors is, nevertheless, physical. The only way I can attend events is online. If the creative industries remove this option, as they have started to since coronavirus protections were removed, they effectively erase me and other disabled and chronically ill creatives from inclusion, especially considering we’re still in a pandemic.
The notion that in-venue events are ‘In Real Life’ is also questionable and exclusionary language that has popped up recently. Real life is all life, whether or not a person is able to attend in-venue. Real life is being unable to attend in-venue because of shielding in a pandemic. It’s missing out on opportunities because of ableist practices and structures in society.
Image description: A pencil line drawing moving across and around the page.
One of the main Big Draw motto's is 'Everyone Can Draw' but you have pointed out that this is a sweeping and problematic statement. This statement can, in fact, highlight that many can't draw for a multitude of reasons, and rather than inspiring, 'Everyone Can Draw' could actually feel exclusionary. To quote your own words, 'Draw if you can and when you can', is a beautiful, aware approach to making your mark, assuming not that everyone can draw or is able to draw, but instead offers a more sensitive approach to creating art. Can we ask when you became conscious that being able to create was a luxury not afforded to everyone?
I finished my graphic memoir The Facts of Life (Myriad Editions, 2017) in 2016 as my condition (M.E.) was deteriorating. Over the following years, I became completely bedridden. I experienced a lot of muscle pain, so I tried to use my non-dominant hand to spread the load when drawing but the pain built up in that arm as well. M.E. is a disease that involves dysfunction in the way energy is made at a cellular level, so it can affect all bodily functions and make it hard to sustain any activity without deterioration of symptoms. This is commonly know as Post-Exertional Malaise (PEM). Assistive technology and adaptations can only go so far in my case.
For a long time I thought that if I ever became disabled, I’d paint with my feet or with my mouth. This is because those disabled artists’ stories are the ones that make it into the media. Some disabled people can make art, but for others it’s not possible. While I have immense respect for the artists who can, achievement stories are sometimes repurposed by others as ‘inspiration’ to suggest that anyone should be able to. Due to my own internalised ableism, I believed that there would be a way to draw if I became disabled. How wrong I was! It was a huge loss and I wish I’d been more educated about energy impairment disability and how severe M.E. can become if you try to push through.
In 2017, I made a comic about the fear of losing the ability to draw, not actually believing that it would ever happen. Within a year, I was physically unable to and began to question ‘everyone can draw’. Full disclosure - I’ve used the phrase myself in the past and appreciate its intention to inspire, but we need to be aware of language in order to be welcoming and inclusive.
Drawing if you can, whether or not you think you can draw well, is another issue. If you think you can't draw because you don't believe yourself to be technically proficient, then definitely draw anyway - if you’re able.
Art tutors often encouraged us to put energy into drawings, and I recall one tutor telling us off for not standing at our drawing boards (back to the sitting-as-laziness issue). I struggled to do so because of a back injury. What would happen if we tried to draw in an energy-conserving way? The drawings would have a very different character, and should be as valid as drawings exhibiting lots of energy. I’m all for the prefix ‘slow-’. Some of us comics creators with ME chose to use the hashtag #slowcomics a few years ago.
When the creative sector started to open up more last year, you tweeted 'I feel this sense of urgency, and I'm trying to get a manuscript together while bedridden but also trying to manage my condition. I need the creative industry not to erase opportunities in the ‘new normal’.
How can we as art organisations, charities, teachers and artists ourselves ensure we're including all artists? What support would you like to see made readily available?
Hybrid options for presentation and attendance as audience at events where possible, but disabled artists who can and want to travel should be supported financially to do so. Livestream shouldn’t be used as an excuse not to pay travel expenses nor to use an inaccessible venue.
Celebrate the work of D/deaf, Disabled, Neurodiverse and Chronically Ill artists during Disability Pride Month in July.
More submission windows set aside for disabled artists, illustrators and writers from agencies, galleries, publishers, exhibitions etc. Give people more flexibility for submissions, submission methods, and deadlines, if required.
Organisations to train staff in Disability Awareness/ Disability and Inclusion.
Diversity drives and opportunities should include Disability.
Offer some free submissions to competitions, exhibitions etc.
Pay disabled artists for their expertise and to talk about their work.
You can find resources for inclusive language. This is a good place to start.
Have you heard of any initiatives taking shape here in the UK or elsewhere?
I suggest people follow Shape Arts, and Disability Arts Online for opportunities. There are now a number of resources and campaigns for inclusivity in the publishing industry whose advice might also be useful in the wider Arts:
Inklusion Guide, launched at the Edinburgh International Book Festival.
Keep Festivals Hybrid
ADCI (Authors with Disability and Chronic Illness) guide to keeping events accessible can be read on Claire Wade’s website.
Creative Futures
CRIPtic Arts
Good Things Foundation, The digital divide
Thank you, Paula.
If you were inspired by or engaged with this interview with Paula, you can follow her journey on Instagram or head to her website here.
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