Creating music through technology at PACE

Over two weeks in May 2019, the deaf musician Eloise Garland and I ran afternoon workshop sessions at the PACE Centre in Aylesbury. They involved primary schoolchildren at Philip Green House, Coventon Road, Aylesbury, and their secondary counterparts at the Bradbury Campus, 156 Wendover Road, Aylesbury.

The workshops were an opportunity to promote Subpac technology in a specialist educational setting, and built on previous collaborative work on a Decibels and Audiovisability Creating Music through Technology R&D project, funded by the Sobell Foundation and Arts Council England (ACE).

This revolved round Laurentia Tan, a medal-winning deaf Para-dressage rider, and her access to music in international competitive dressage – which made Decibels and Audiovisability, a multi-disciplinary creative initiative with music and deaf people at its core, ideal partners.

The Creating Music through Technology project aimed to raise the profile of both Laurentia and Subpac (vibrotactile) technology via film, music, journalism, and visual art made by deaf people. Taking this work to schools like PACE, which is aimed at children with motor disabilities like Laurentia, was therefore a natural next step.

With both sets of children, the workshops took two parts. The first part was a 45-minute school assembly, with a short film of the R&D being shown on a large screen and a briefing of the project. This was followed by a demonstration in which Eloise approached each of the children with the Subpac vest for them to feel – 15 children in the primary school assembly, 10 in the secondary – before I took up the mantle to do a live drawing of a horse with it on, allowing the musical vibrations to influence my mark-making.

The second part was a 30-minute repeat of said demonstration the following week, before the children went back into their group classrooms. Each group – there were three in Primary, and rather fewer in Secondary, allowing more scope for flexibility – had three 20-minute activities each.

The first group discussed the assembly with their conductors (teachers) and LSAs (1:1 learning support assistants); the second group explored feelings in music with Eloise; and the third group, with me, had a go at painting or drawing with the Subpac vest on. (I decided to let them choose their own art materials by way of adapting to their individual disabilities – cerebral palsy is a wide-ranging umbrella term.) When they had finished one 20-minute activity, Eloise, I, and designated staff then swapped places.

The results were very exciting. The children had clearly made mental notes of my live drawing, and created their own movement paintings. Some even managed to evoke the sense of a galloping horse in their abstract marks. You could actually see their confidence growing as they went on – I got the sense they felt empowered by the vibrotactile qualities of the vest. You can see in the below selected images how they responded to my original live drawing (bottom).

I have been an artist and writer for over twenty years, often collaborating with other deaf and disabled artists: most notably as Founder Director of Salon, a grant-funded Deaf contemporary visual arts project that ran for five years. Yet that was the first time I had facilitated, or co-facilitated, an art workshop with disabled children specifically, and as a parent of a disabled child, it meant so much to me: my own daughter is a PACE student. I felt this was crucial to the development of the children’s independent, critical thinking – creativity is after all key to advances in technology, science, and the humanities.

Eloise was very popular in her music activity, getting the children to suggest emotions which she conveyed briefly on her violin. This gave the children much pleasure and incentivised them to ask for more. It didn’t matter whether it preceded or followed the visual art activity – far more important was how their juxtaposition fuelled the children’s imaginations on a multi-dimensional level.

I’m not just saying that! The staff themselves were very moved by the workshops, and I’m pleased to share their thoughts here:

“Very interactive and creative work shown to the children. Allowing the children to explore with different instruments, music, etc.”

“Really interesting and innovative workshop. The music and emotions part was particularly useful for our children who are learning to recognise their own emotions.”

“Innovative, opens the door and gives lots of opportunity for people to live normal lives and access sports and dance.”

“Exceptional piece of equipment presented in an easy to understand way.”

At the time of writing, Eloise and I are preparing to run similar 90-minute workshops at PACE this summer. Although these will be paid by a different charity – and the illustrator Tim Reedy will be replacing me for half the sessions – they are no doubt inspired by the wonderful time we had together, and I am grateful to the Sobell Foundation, Decibels and Audiovisability for helping implement the project.

Advertisements

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.

IMG_1855

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.

fullsizeoutput_3f7

 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.

fullsizeoutput_3f4.jpeg

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.