Visibility, erasure, and making space for our sublime disabled stories – by Jeda Pearl Lewis

Jeda Pearl is a Scottish-Jamaican writer and poet and Co-Director of the Scottish BPOC Writers Network. Performances include StAnza, Push the Boat Out, Hidden Door, Big Scottish Book Club. Her work is published/commissioned by Black Lives Matter Mural Trail, New Writing Scotland, Not Going Back to Normal, Tapsalteerie, Shoreline of Infinity, Rhubaba, Momentum, Peepal Tree Press and Collective. Find her online @JedaPearl jedapearl.com.

‘The fact I exist is a political act’ – Deborah Williams

In the Disability Arts Online and Graeae podcast Disability And… Alexandrina Hemsley and Deborah Williams talk about the intersection of race and disability, and the visibility and erasure of Black disabled artists.

When Williams said, ‘The fact I exist is a political act,’ it reminded me of a recent poem I wrote that repeated the phrase ‘it was political.’ In the context of my own circumstances – who and where I was, my path to writing and writing that very poem, my hypervisibility in 1980s Scotland as a child of a white woman and a Black man – every aspect of my existence felt political, which resulted in the title / first line: ‘I was born / and it was political.’

As a young person, to move through my world which is/was primarily Scotland and occasionally Northern England, is/was to move through a predominantly white environment where I am/was unknown, unplaceable, so I used to stride as if into battle. They could tell I knew something they didn’t know, something foreign, forbidden, strange.

Nowadays, my disability has woven me to my abode. Is it protecting me from this world where I’m viewed as alien?

Many of us marginalised folk feel our very existence is political…

Without my walking stick, I have an invisible disability. But my experience of racial visibility means I can empathise with people who have visible disabilities and/or differences, where (nondisabled) people feel they have the right to invade your personal space, ask intrusive questions, abuse you, expect you to talk about your disability (or ‘protected’ characteristic) and trauma and nothing else.

Then there is the sweeping erasure. They don’t believe you. They ‘see’ you but to them you are an oddity, a corruption, a temporary shattering of their worldview, a token, a source of pity. So, they don’t treat you as fully human... on it goes...

It’s relentless! And exhausting. And we’re over it.

There are still so many problematic narratives and negative stereotypes prevalent in our storytelling across literature and audio/visual media. Being disabled is still seen in such a negative light. We have all this external and internal ableism to deal with and our society is still so ableist that disabled people continue to be systemically oppressed.

These narratives originally come from ancient fables, fairytales or religious texts where disability and disfigurement are often synonymous with wickedness, wrongdoing and punishment, and the nondisabled body as a happy ending of a magic ‘cure’ or healing as a reward for passing trials and tribulations, showing remorse or doing good.

It’s not enough to have sidekick disabled characters by nondisabled authors and illustrators. We need more own voices literature and art, including stories where a character’s disability is simply an everyday fact and not necessarily integral to the story.

‘I was complicit in my own silence and erasure’ – Deborah Williams

Due to the ableist and racist society we grow and live in, us marginalised folk can be complicit in our silence and erasure. This is quite devastating but there are multiple reasons why. We may have been shouting so loud for so long and been met with so much ignorant abuse, microaggressions, barriers and nonsense that we’re utterly puggelt. Our societal conditioning, intergenerational harmful stereotypes and lack of representation give us a major lack of confidence in ourselves and our work. The lack of awareness around Crip Time. Or all of the above.

Having greater representation across all areas of the literature sector will give more opportunity for marginalised voices to be heard, listened to, and acted upon and, in turn, reduce external and internal ableism and encourage more disabled writers to give themselves permission to use their voice and create wonderful, wise, humorous, change-making art.

From a practical perspective, how is the sector actually making those changes? Are they updating their submissions processes to be more accessible? Are pitches being accepted in alternative forms, like audio? Are notetakers, captioners, sign language translators being provided? Are disabled readers and editors being hired, mentored, promoted?

Writing books on Crip Time

Creating art takes time and energy.

Disabled people’s experience of existing in an ableist society saps time and energy (multiply that for folk who are BPOC, LGBTQ+, working class, a parent or carer).

Sourcing income to pay your bills saps time and energy.

Writers are expected, in our ‘free’ time, to spend months and years writing books, researching agents and publishers to submit to, making multiple submissions, writing and submitting short-form pieces (poems, essays, short stories) to improve our publishing credits. Social media is supposedly optional, but more followers equals more potential readers in the eyes of publishers. Website, blog, networking…

All this unpaid time and energy, in order to hopefully, maybe, possibly sell our work. And the reality for the majority of writers is that your published work is unlikely to cover all your bills. You will still need other income sources, for example, being a workshop facilitator, panellist, guest author, tutor, or any other job that pays money. 

Having an ELCI (energy-limiting chronic illness) means you are starting with a battery that is almost flat. Physical and mental activity can exhaust you much faster than a nondisabled person. You will likely need at least equal or double recovery time after being ‘on.’ Being ‘on’ at home might include washing and dressing yourself, cooking, housework, parenting or caring duties, remote working. Being out of the house, whatever the activity, is ‘on-ultra,’ adrenaline firing. See also Spoon Theory.

Generally, being disabled or neurodivergent, things like sensory overwhelm, being met with inaccessible spaces as a wheelchair or mobility aid user, extra time for medical appointments and negotiating access requirements, recovery time, and so on all add up.

There is a vast lack of knowledge and understanding from the nondisabled world around this. They can and must do better.

We can and must do better.

‘Your disabled body holds sacred geometries

Sing this affirmation!

My disabled body holds sacred geometries’

– Sublime body reveals itself, Acts of Observation, Jeda Pearl

We must give ourselves and one another permission to keep finding and using our voices. Calling for change, as we find ways of uplifting and archiving one another’s work.

I’m looking forward to more organisations showcasing and publishing disabled writers and artists, hiring disabled people and building in new ways of doing things.

The Inklusion Guide will be a game-changer for the literature and arts sectors and for disabled writers and artists.

Notes:

Disability And… Podcast, episode 13. Disability And... Race: Alexandrina Hemsley and Deborah Williams

‘I was born,’ poem by Jeda Pearl, Writers of Colour Mixtape Audio Anthology 2020, SBWN.

puggelt is Scots for a particular exhaustion or frustration where you’re at a standstill from, done for, at the end of your resources

Disability terms including Crip and Crip Time

BPOC stands for Black people, People of Colour

Spoon Theory, by Christine Miserandino

Acts of Observation, is a series of poems by Jeda Pearl exploring where observation intersects with the Black or brown disabled body, science, archeoastronomy and the sublime. How are we observed? How do we observe ourselves? Which bodies are seen as sublime? Captioned video on Collective’s website.