Audiovisability: the project that drove my creativity

For three months last year, I was an artist and writer with Audiovisability, supporting their research and development (R&D) project funded by Arts Council England.

The project revolved round deaf Para-dressage rider Laurentia Tan, a multi-medal winner who has been competing in Paralympic and global sports events for ten years – and yet has never won gold. It came about due to her growing frustration over barriers to participating in individual freestyle, the only dressage test set to music.

My role was to shadow her in a variety of ways – online discourse, information-sharing meetings, interviews, flying to Cologne for a weekend – and combine that with my own research and development, eventually writing a report accompanied by my own drawings. The result can be viewed here, with a shorter version on Disability Arts Online here.

Laurentia has cerebral palsy. It was for that reason – among others – that Audiovisability’s creative director, Ruth Montgomery, invited me to take part. I am, after all, a parent to a child with cerebral palsy who has explored that road through my blog and my Kindle book, My Daughter and I, which can still be downloaded from Amazon UK. Besides Laurentia and I had been wanting to meet for years – almost since my daughter Isobel was diagnosed at age one in 2010, just after the sportswoman had entered competitive dressage.

Audiovisability therefore facilitated a precious moment where, Laurentia paid us a personal visit and lent Isobel her latest silver medal, won at the 2018 World Equestrian Games, to wear for a photo opportunity. I can’t overstate how significant this was for my child’s self-confidence, for her younger non-disabled brother to witness this, and how proud I felt that day.

Meanwhile Ruth sought to both bring the R&D to a wider audience through a variety of creative disciplines, with music at its core, and use it as an unique opportunity for the artists to build on existing skills and expertise.

So not only did Laurentia boost her music literacy through a combination of music lessons and collaborative discourse – but as one of the contributing artists, addressing a subject that I knew very little about enabled me to spawn a new writing language; which in turn, also pushed my drawing into a more innovative, almost allegorical style.

Given the almost polarised demands of the two strands – bombarding my mind with structural, grammatical thought for long periods of time (even when taking a coffee break!), and then switching to freeform drawing – it was possibly the most challenging and intensely creative task I’d taken on.

Nevertheless, it provided an invaluable opportunity to drive both forms of creativity to new places, transforming my art and my writing as a whole. This new development will be crucial in realising an ambition that I have of producing illustrated children’s books in future.

I am privileged to have worked alongside such a wonderful bunch like the Audiovisability crew, and I look forward to more collaborative work with them. Indeed we are planning for workshops, funded by Decibels, to take place at the PACE Centre in Aylesbury later this year, which will explore similar dressage music themes with their students.

May I extend deep thanks and appreciation to Ruth Montgomery, fellow musician and producer Eloise Garland, sound designer Chris Bartholomew-Fox, German dressage coach Volker Eudel, film director Louis Neethling and most of all, Laurentia Tan and her mother Jannie, for their kindness, patience and time.

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#dailyartchallenge

Since I began convalescing, I’ve had the opportunity to revive my passion for drawing. I did this via a challenge that I set myself this time last year, which is – simply, to draw something every day. This is much harder to do than you think.

Check out these works so far.

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Day 21. Picking up where I left off.
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Day 22. A mixed media drawing done for a friend.
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Day 25. A 15-minute coloured pencil study, following the outline drawn with an ink-stamp roller by my six-year-old.
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Day 28. Study of a local terrace in soft pencil.
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Day 30. Drawing an Underground station in biro without lifting the pen off the paper.
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Day 31. Portrait of my late father in soft pencil.
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Day 32. Drawing my left hand in pen with my non-drawing hand (right).
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Day 33. Mixed media drawing. Who needs yellow?
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Day 41. Doodling wet diaphanous folds in soft pencil, a la Man Ray.
Day 43. Mixed media drawing – my rather Japanese take on Erwin Blumenfeld’s 1937 photo, Lisette, Paris.
Day 44. My first quick sketch of a swimming pool.
Day 45. Coloured pencil study of rabbit ears.
Day 46. Fine pen drawing of a local building next to Sainsbury’s.

Why do it? However well-practised I am at writing, there are days when emotions, dimensions, perceptions materialise that cannot be encapsulated by the written word, for all sorts of reasons. Perhaps they are repressed feelings, or I just haven’t found the word to describe them. Perhaps they’re simply beyond language. I need to reconnect with my surroundings, make another form of expression integral to my life, and increase my appreciation of others.

There are scientific reasons, too, for making art.

For me, it’s also a way of enriching my writing, and it may even contribute towards an illustrated book in the future. My drawing and my writing always went together when I was a child. (I have fond memories of my religious knowledge teachers giving me lined textbooks with blank inserts to draw on for the Bible stories that I was tasked to write every week.) I see no reason why the two shouldn’t meet again.

Let’s not treat this as a sneak preview of my next book though. I’m not making a commitment to one just yet; it’s early days.

For now, keep an open mind, and enjoy the drawings as they are.

Convalescing.

Today marks just over six weeks to the day I left hospital, and the contrast in energy levels is interesting.

In isolation, I didn’t have much to see or do. My hospital room had no windows, no art on its walls; flowers were banned. 

Plain seclusion shut me off from the everyday pressures of paying the rent, the bills, paperwork, housework, and putting away toys – leaving me to pursue the simple pleasures of reading, writing, looking, or sleeping.

It’s crucial to note how encompassing my weakness was. It’s made me realize just how much energy we use up each day, how much others can demand from us – how easily we set ourselves up for a fall.

Resting in hospital, I was able to gain enough energy to near-resemble my old self in conversation with family and friends. Virtually the only noticeable physical weakness was in mobility, once I put feet to floor and started pacing round (initially after mammoth grunty efforts to sit up on the bed, of course).

On Day 3, any steps I managed were the length of my littlest toe; by Day 5, the strides were bigger, but pacing once or twice round the bed nevertheless sent me to sleep. I thought only this kind of exercise needed to be offset with ample rest. So I closed my eyes lots, read lots, wrote lots.

Over the course of my eight days in hospital my energy did grow, to the extent that upon discharge I could dress myself, pack my bag, and walk – just – out of the ward.

Once home however, the focus of my energy shifted. Having had to use a wheelchair to get to my mother’s car, I needed her as a crutch to get me to the front door.

img_1800Incredulously, I watched my feet move as if on a Zimmer frame, while mentally racing ahead with the usual zip of a parent in her 40s. Forcing my mother, 25 years older than me, to slow her pace in line with mine felt genuinely weird without an option.

I soon discovered how quickly emotion – any kind of emotion – also depleted my energy. Anger, upset, excitement, desolation, frustration, joy: all these required raw energy to form the appropriate facial expression and body language – something that asked far too much of me in my delicate state.

My countenance was already a little pinched and pale from the loss of appetite when I got ill. (I’d say I lost half a stone – no big deal, but being already slim, it showed in my face and wrinkled jeggings.) I now had to have my own death mask to match; I could barely move my lips without getting tired.

At least, on the few occasions when I was required (and able) to do so, it made my signing a lot clearer.

Zoning out at moments of potential stress became a regular practice. I distanced myself from certain individuals who basically asked for high drama, intentionally or otherwise. When in my first week out of hospital my son dropped to the floor with a tantrum, I sat motionless and in equitable silence until he had finished. I am thankful that he no longer pounces on my bed at a ridiculous hour.

In the early days of my convalescence I made the most of watching the trees sway from the French doors in my sitting room until I got a little colour separation. 

When ex-hurricane Ophelia swept past without affecting my region, I had time to watch a neon orange sun above the evergreens cast an Instagram-filter glow on the afternoon, with rays of the same unearthly colour superimposed on my sitting room floor. I couldn’t stand for long; could barely hang the washing out or load the dishwasher without getting woozy.

Instead, I took to drawing, knitting (in five days I made four-fifths of a enormous and completely improvised jumper), and reading – the obvious benefits of which externalized superfluous pressure, and could be done from my bed.

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If I over-exerted myself, once I sat down, I couldn’t get up again or reach for my mobile. Glaring at it didn’t help: both it, and the surface it lay on, seemed to dolly away beyond arm’s length, like James Stewart staring down the belfry in Vertigo.

For school pick-ups, I leant heavily on parents whose children were classmates with my son to take him home for a few hours, while my social worker booked carers two hours every day for a fortnight.

Getting the children up in the early mornings was the worst. My mother had to drive 20 minutes to mine at 7.30am daily so to assist in my daughter’s hoist transfers and walk both children to school for a while. I had people cooking and freezing meals for me. Making even a basic omelette wiped me out.

As soon as I was able, I started venturing outside my front door, inching further each time. On my first attempt, I got to as far as three doors down before sensing the need to turn back – and reached my front door handle just as my legs almost gave way.

On another occasion, a neighbour in long shirt-whites came to my aid when he caught me nuzzling a hedge on a different corner. I was fine; just a bit embarrassed. Cognitive Melissa didn’t quite have the patience for the traumatised physical being on the street who insisted on slowing down like someone twice her age.

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 In succeeding weeks I have, of course, progressed through taxis to quiet shops for midweek essentials to Saturday dips into the shopping centre. I even achieved a short accompanied trip to London for some theatre and a budget spa treatment, although sometimes I still cannot bear how oncoming crowds and multiple steps alter my peripheral vision: a psychological effect of my dehabilitated balance.

An more unexpected after-effect of my illness is the incapability to book dates. If someone says they’ll pop round tomorrow noon, I’m clear. But if they send a wordy text giving me a choice of Thursday or Saturday or they could give both days a miss and come in for twice the time the following Monday would that help? – my mind just fogs over.

Likewise, date listings extending beyond the first, or even the second, week turns into meaningless words and numbers. I can only log one day at a time. It reflects my own efforts to gain fortitude, step by toe’s length step.

I often think of John Lydon, formerly Johnny Rotten of the Sex Pistols, recounting his meningitis experiences at the age of seven in a 2014 autobiography. Of course, his was a particularly traumatic illness that robbed him of his memory for four years and left him with a permanent spinal curvature. But on a much lighter scale, I get the mental struggle to process vital information.

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In one interview, Lydon speaks of the value he now places on retaining memories, and the shock he experienced when his hospital stay ended after a year and he found himself in an unfamiliar environment under the care of two adults he couldn’t remember meeting. (That environment was his home, and the two adults his parents.) Somehow he’d grown a sense of belonging in the hospital; in his amnesia, he thought that was home.

Now that I have had bacterial meningitis a second time (albeit my first as a fully-grown adult), I understand why Lydon has become the straight-talking anarchist we know and love. Because I don’t have time for bullshit either. I must keep my life simple, if I am to recuperate properly. If someone gets difficult, I’ll zone out. If I get stressed, I’ll say so (and I have certainly found being open about my illness helpful).

Most importantly of all, I must make time for me, the passing clouds, the smell of the dewy grass that I lie in on a sunny day, my knitting, my drawing, my books, and (when I can manage it) my writing. Because they are what complete me and my convalescence, and my children deserve it.