Raman Mundair reflects on her life and art as a disabled queer woman of colour in Scotland. She raises pressing questions about how UK society and arts communities fail chronically-ill and immunocompromised people, especially BIPOC (Black, Indigenous, People Of Colour) and QTIPOC (Queer, Trans, Intersex, people of colour). The article features some of Raman’s recent work on living with ‘invisible’ disability and chronic illness – in poetry, photography, film and dance.
I write this with a massive cold. A nasty virus that swells my face, and makes my constantly-running nose twitch before I sneeze. I feel sodden with cold. My limbs ache like I’ve climbed a dozen mountains one after another without warming up. I’ve had these symptoms for six weeks. But this is a good week. I have a level of mobility – I can walk (albeit in acute pain). If I stuck on some lipstick, combed my hair, and changed into fresh clothes, I reckon I could pass. I can look ‘high-functioning’. I look able-bodied.
Nothing readily betrays that my head feels full of cotton wool, that my cognitive function is impaired. That I am not myself, or perhaps more accurately, I am: I’m the self I can now become, without warning or mercy. This is what autoimmune illness ‘light’ looks like. The full-on version is more easily identifiable – it involves me falling, hobbling, my skin sallow and bruised.
I write this during the (beginnings of an) upsurge of the Covid-19 virus. It’s interesting that while some public health warnings highlight risks for the elderly and ill, little mention is made of people with compromised immune systems. If I don’t advocate for myself during the flu season, I won’t receive the flu jab. The same applies here. Immunocompromised people are not considered disabled enough or ill enough to be visible or receive support, in the health care system or general society.
If I decide to leave the house I’ll use walking aids, and prefer the company of someone I trust, but that’s only if I have the energy to leave the house. The ready default is exhaustion, constant exhaustion. No matter how much rest you think you’ve had, there is always more to seek. I have days where I feel narcoleptic – where falling asleep driving feels dangerously possible. Days when I feel I’m walking underwater. A deep-sea creature, like the ones they find living furlongs down in the dark, who’ve adapted to the cold and lack of stimulus by becoming blind and scuttling around on the sea-floor. That is how I feel and imagine myself, or is that the depression that comes and settles in like head lice? Perhaps it’s both.
I don’t like to call my disability ‘hidden’ – I feel it’s quite evident if you take a moment to look closely or engage with me. It’s there in how my inflamed joints move. My need to sit down or move about gently if I’ve sat down for too long at meetings. It’s there in my need not to be in chairs that are difficult to raise up from. (Those soft, easy chairs are the worst – I find myself literally sinking painfully in them, as if ridiculed by a piece of furniture.) It’s there in my attempts to do yoga, or any exercise. The fact I have to make my hands into fists and place them on a surface, rather than use fingertips as most people do. It’s there when I find myself hailing total strangers in the street to help loosen my handbrake because my hands have lost their strength.
My struggles are not invisible. They are unacknowledged. They are reduced – ‘At least you can xxx’, ‘Look on the bright side…’, ‘Count your blessings…’ – and all the generic stuff folk say when they feel uncomfortable about your honesty regarding how you really feel.
Just for once, let me share for a moment who I actually am. I am a queer woman of colour, a writer, artist, activist, mother, lover and fighter who has published three books and had several exhibitions last year. I’m raising three kids under five years of age. I’m part of the Glasgow activist community – focusing primarily on No Borders and anti-violence work. I’m a loyal friend and lover. I love to dance. I’m sex-positive. I enjoy dressing up, and am open to feeling alive and joyful by any means possible. In addition, I’m someone who lives with a debilitating autoimmune illness, one that has tried and failed to rob me of all the above, and doesn’t stop trying. Every day involves new negotiations. Some days I wake up and find the pain has reached my eye sockets – who knew it could hurt to use your eyes?! My feet are another contested space, the pain so sharp it shouts and barks and wails like a siren. I also struggle with bleeding gums and a sore mouth – another (unattractive) feature of autoimmune illness. That said, I create. I make. I write. Despite the daily challenges and constant pain.
But surely there are other ways to be an artist, ways that don’t involve so much ‘despite’? A collective approach that is able to hold the needs of all without prioritising ableist arts practices. I believe in the power of imagining other possibilities, other ways of being. What could that look like? And what would it take to fire this into action?
I feel the cold. Always. It may be warm, but I am cold. Particularly when I’m exhausted. I start to shiver. And ideally, I cocoon myself in a warm duvet, but that’s not always practical whilst navigating Lidl with three noisy bairns. Or trying for the thirteenth time to fill in a form, any form, but especially arts funding forms (ARGH!) and your illness has affected not only your body but also your cognitive function and means that you’re up against the wire and inevitably you miss the deadline/opportunity.
For me, medication is a mixed blessing, frequently wholly inconsistent. Some meds have improved my situation, others have marred me and slowed me down. At one point I was on high-dose steroids as that was the only response the medical model could offer as relief. It did mask the pain but it also changed me – I looked in the mirror after a month and didn’t recognise myself. More disturbing are the meds that stop your critical thought processes. The self I value most deeply temporarily lost. I found myself making hard decisions – knowing that I would have to live with pain in order to have the ability to think creatively and critically.
I also admit to a reticence, probably related to a complex and misplaced sense of shame, about disclosing all of the above. Especially to funders or people in power commissioning work. I don’t want to be read as somehow lacking in critical thought or ability. Nor do I wish to be seen as unreliable, as someone who (and I hate this term but hear it so often) ‘cries off’ at the last minute. Or made to feel that asking for small adaptations to make spaces or projects accessible to me is a huge inconvenience. In the Scottish and UK arts landscape, being invisibilised and not prioritised is sadly the default experience.
There is a clear intersection of ableist ideas with classed, gendered, and racist assumptions made about QTIPOC and BIPOC. This of course impacts on racialised disabled bodies in many ways, including extreme pressure to appear ‘well’, to perform as ‘ably’ as possible, and to conform to white (supremacist) norms whilst doing so. Disability and chronic illness mark and weigh upon black and brown bodies. And our experience of disability is further exasperated by the complex daily negotiations we have to manage – and are constantly gaslit about. Lived experience that doesn’t translate in wider, general disability (arts) spaces and forums.
In a recent gal-dem article, Lauren Nathan-Lane writes about the importance of viewing these issues through the lens of community:
‘Many of us in the disability community are also shocked at all the adjustments that able-bodied people are suddenly making and getting, now that serious illness might affect them. Many of us have been fighting for years to get adjustments to university timetables, or to see our lectures streamed online so that we’re still able to study while we’re housebound. Yet, now the coronavirus has come, our long-sought-after adjustments are being implemented en masse…When the plastic straw ban came into play disabled people had to campaign to make it clear this would negatively impact our day-to-day lives, to get anyone to pay attention. Yet now the coronavirus has come, coffee shops are pivoting back to single-use plastic. We see society’s ableism. And we will remember it next time we are refused access or accommodations.’
This is also true of disabled artists of colour articulating their needs and being ignored, only to find their white counterparts’ needs have, low and behold, been met. White artists are accommodated because those in power can relate to their whiteness and modes of creativity. This facilitates a degree of empathy that rarely exists for those of us they read as ‘other’ on multiple levels, including class, gender, sexuality and race.
Being engaged in the arts should be about dialogue and discourse and not capitalist production, which creates this urgency to make work using abled and ableist methodologies and timescales. These ways of working have been assumed without reflection or interrogation of whether this is a fit way to engage ourselves in art-making.
Recently I was commissioned by Edinburgh’s Dance Base to create a text, sound and film installation. The piece still/ill looks at how queer women of colour with disabilities and ongoing physical pain take up space inside the body and place. I reflected on the subtle, and the inner voice, inner movement – the idea of being still but moving at the same time. Of being in process and inertia. Of the tautness in between these spaces. I considered questions that have come up for me in my identity as a queer disabled artist of colour. I considered the concept of disability – dis/abl(e)ility versus agility versus pain – in relation to when we compromise this space and our voice. How can that resonate in gesture and voice?
What do we need to say?
How do we need to be remembered?
As a whole, not in parts.
In subtlety and in the murk and gray rather than the convenience of white and binary space.
It’s a work I hope to develop into further incarnations which lead to the possibility of me using my beautiful, disabled, strong/weak, sensual, ill body in live performance. Watch this space. But know this: just because I’m dancing, it doesn’t mean I’m not in pain.
Raman Mundair bio (audio):
Sandra Alland is guest editor at DAO from 25th March to 26th April. Check out all San’s commissioned pieces on their Project page. Audio versions of all pieces can be found on San’s dedicated SoundCloud channel.