I’ve been having a muse lately on the whole issue around ‘voices’. Like a lot of people with a foot in disability-world, I bristle at the idea that people with disabilities need to be ‘given a voice’. They already have voices and do not require to be ‘given’ another, as though their own were not of the right kind. What they need is for the people on the other end of the communication to be given – or better still, to develop – the ‘right sort’ of ears.
Perhaps it’s a generational thing. ‘Speaking and Listening’ has been a formal part of the National Curriculum since 2004, but those with the job of listening to people with disabilities won’t have been brought up with ‘Speaking and Listening’ as a discrete educational concept. Not a very good excuse, though, is it?
My secondary school was a selective girls’ school, and old-fashioned hardly begins to describe it. The uniform was out of the 1920’s, with a few concessions to the 1950’s, so even those were the best part of 30 years out of date. We numbered off roll-call at registration, leapt to our feet whenever an adult entered the room, circulated the narrow corridors on a one-way/keep to the left system, changed our shoes every time we entered or left the buildings, submitted to a full House/prefectoral system of discipline with its good work marks, merit marks and conduct marks, practised deportment with books on our heads, were taught to get into and out of a mocked-up car in the gym (wearing a knee-length skirt and without unseemly knicker-flashing); and were always under threat of freezing communal showers after outdoor PE.
Amongst its other Empire notions of How To Train Young Ladies, the school had a tradition of compulsory community service. When I was in the Lower School, I visited a resident of a nearby old people’s home; in the Upper School I helped staff the crèche in a waterproofing-and-crushed-grass-scented tent at County Shows (weren’t we cavalier before the advent of CRB checks?); and as a sixth-former, I attended once a week at the local ‘Handicapped Youth Group’.
There were a few physically disabled members of the group. As far as I remember, they mostly had forms of cerebral palsy that might involve splints and sticks, but not wheelchairs, and there was one girl born with a hole in her heart that had never closed, who was sulkily furious at being lumped with people with types of disability that she openly and vocally despised. Most of the participants had learning disabilities, and of the learning-disabled, a good two-thirds had Down Syndrome. Having grown up around Naomi, I was very comfortable in the company of people with Trisomy 21, and it must have been noticeable, because after a while I was asked to make a special project of trying to befriend Jane.
Jane was in her mid-teens, with flyaway dark hair cut into a chopped bob, shining dark almond eyes and fine-grained, slightly dry skin that was always scored and marked with scabs, scratches and bruises. She didn’t speak to anybody. She didn’t like any of the activities that were on offer. She would upend craft tables, tear other people’s pictures across and across, and destroy any materials within her reach. She would not join in games, but would sidle up to people and slap, pinch, scratch or bite them. My waist-length hair was an irresistible provocation to her, and the first time I went to sit by her, she seized a double handful of it and jerked so hard that I yelled involuntarily and my eyes watered. Two of the adult organisers rushed up; one grabbed Jane’s hands and held her as she threshed and screamed, while the other pried her fingers open and freed my hair. I drew back, while both the adults loudly scolded Jane. Jane took herself off to a corner of the room and sat on the floor, facing the wall, rocking and muttering. The adults fussed round me, while I assured them that I was more startled than hurt, and would plait and pin up my hair before approaching Jane again.
Having modified my hairstyle, I went over to Jane’s corner, and was distressed to find that as she rocked, she was systematically gouging and scratching her cheeks and wrists with her nails and slapping and pinching her face, hands and legs in rhythm with her rocking. At the same time, she chanted the only words I ever heard her utter in the two years I knew her: “Bad girl, Jane <slap> bad girl, Jane <gouge> bad girl, Jane <pinch> bad girl, Jane <scrape>”. But a tentative “Jane?” as I knelt beside her only brought a roundhouse slap whistling onto my cheek, and then with a peculiar look of satisfaction, she returned to her rocking and self-harming.
Several weeks of trying taught me that Jane had an inviolable personal-space zone that extended an arm’s length from her body; step inside it and to her you were fair game. But outside it, you did not exist, unless you raised your voice or caught her eye – and attracting Jane’s attention invariably spurred her to violence, first against you or anybody else in the vicinity and then against herself, always with that horrible, heartbreaking little litany of “Bad girl, Jane”.
Yet despite only ever speaking those three words, I felt Jane was telling us her whole life-story. Although the idea of ‘speaking and listening’ as a formal subject would, I am sure, have been met with astonished disdain from my teachers, my school had nevertheless imbued me with the idea that wordless stories could be heard if we listened with our empathy, our own experience, our brains and our hearts. Even at 16 or 17, I felt I could see, as plainly as if it were laid out in a full-length autobiography, how Jane’s initial attempts to communicate with the world had probably been physical actions, perhaps rather clumsy and forceful, which had been negatively received and repudiated rather than re-framed; that she had come to expect negative reactions and now seemed to have become incapable of recognising or accepting anything else; that she had learned to isolate herself and inflict the retaliation that had been meted out to her; that she still wanted to reach out to her fellow human beings but only knew this one way of doing so, which led her round the same hideous repetitive path of hurting others, then hurting herself.
But although I felt I understood how Jane had come to be the way she was, I never figured out a way to reach her or let her feel she had a friend. I felt badly about it, for all that I told myself I only spent 90 minutes a week with her; the remaining 9990 presumably being passed in the environment that had been moulding her to her presenting personality for the previous fourteen or fifteen years. The only thing I could do for her was not to forget her, and I haven’t.
When Grenouille was a baby, and if my milk wasn’t coming fast enough to suit G’s notions of how dinner should be served, the small fist would rise up, fingers curled to slap, pinch and gouge. Many babies pat and knead the breast to encourage let-down, but Grenouille flailed wildly and wrung at my skin. It was painful and unpleasant, but I didn’t want to punish G by shouting or stopping feeding. Instead, I would trap the little hand flat against my chest, and then slide it along in stroking movements, saying in a soft voice, “Gently! Gently!” To begin with, I could feel G’s resistance, but after a couple of weeks, I only needed to say “Gently!” as the hand began to rise, and after a tiny hesitation, G would stroke rather than thump and I could feel the milk flow faster on a surge of pride and pleasure in my child, who at four or five months was already speaking without words, and learning to modify expressions of frustration in the confident expectation of being listened to.
I just wish I didn’t feel so fearful that other people will in future be as incapable of listening to Grenouille as they seem to have been incapable of hearing Jane. As they failed to hear LB.