THE THWARTING OF DREAMS by HERO JOY NIGHTINGALE hojoy@rmplc.co.uk


I am a kid stepping out towards adulthood with a range of experiences tucked under my belt that give me a cynical disgruntled air I much despise in myself. If I could just change the mindset of several million people, life would be much easier and more fulfilling: you see, I am a crip child demanding a future that is not bleak and not boring.




Story Eight: The Problem of Being Unlovable


The hardest bit of being disabled is being unlovable. I'm not sure when it crept up on me that I am. One starts with such naive confidence but a wakening awareness just grows and grows. I don't have any daily gripe about being unable to walk and talk although there's a big cruel hurt called frustration that one lives with, a hurt that things so magical can't be done by me: I cannot run through the autumn woods kicking up the crisped dead leaves and birl about arms outstretched throwing music into the sunbeams from my very own throat; there is a perennial hatred of my hands because I would love to accompany my thoughts with a chattering piano and a mellifluous handsome cello; I would love to paint and hew marble. It is not the two steps to a front door that cause me the most grief, it is the thwarting of a passionate urge that runs deep in me to cast out self-expressive stuffs. Such a yearning there is, an itch that I cannot ever eradicate, and based in my hands and my heart.

My primary disability is my inability to speak. That cuts me off far more than 4 useless limbs. I remember the day I realised I would never talk, the day I realised I was disabled and not necessarily stupid. I had teachers (ie therapists) trying to teach me to sit and stand, to hold and manipulate objects, and to vocalise. I was clueless how to do anything they wanted me to do but they could feel my response to language and knew that I was a clever bright, even precocious, child. I didn't know this. I thought I was stupid because I hadn't learned to walk and talk as other normal children do and I was being taught. One day I wanted to ask mum if I would ever talk, and of course I could not and I burst into tears, invisible not actual tears because I have rarely managed to get to the outside my pain, I go into physiological shock but I don't cry. I feel what you feel but I don't express it like you express it. It is why my consultant termed my disability a type of locked-in syndrome, although in my case I am locked in by chaos not the more normal paralysis. That day I was swamped by emotion at being unable to get the attention of my family, at the day carrying on as if nothing momentous had happened. The crossness I had previously felt when alone in my cot unpicked up and carried to where the action was turned to a desperate loneliness: I became scared of being me.


My mother and my principal therapist built a route out of my isolation, gave me opportunities to make choices and showed other people how to enable me to play. I attended playgroup with my peers, I went to nursery but even when I started to learn to spell, I continued to feel stupid. Disabled for a lifetime, inescapable, ineradicable, intractable and cruel. I tried so hard to do things, I tried my very very best, what else could I think but that I was stupid? How does a child conceptualise disability otherwise. I had a stupid body. But somehow I assumed my mind was also stupid. Noone ever used the word dumb but maybe I heard it somewhere. My peers went off to mainstream school and I was left with the babies. My mother did projects with me at home where I read books with her and did quizzes filling in the blanks and paintings, lovely sloshy watercolours to illustrate my project books. I did surveys of family friends and therapists, I went on outings and did experiments. The projects were on Farms, Bodies, Fire, Music, Flight, America and I spent about a month on each one. When I was allowed to start school I was very scared of how far behind I was. I went into class with my peers who had been there 3 whole terms.


I wasn't behind, I was bright. My drawing skills, my number sense, my memory, knowledge and spelling were all up to speed. It was huge fun. It was huge fun just for a little while. Then my mind was racing on and on and on, absorbed by the music dinning in my head, fascinated by the criss-crossing of number circles that turned in 4 dimensions within my sight and seemed to have volume and substance, agog at art, the slapping of paint onto canvas that produces a Picasso woman afraid of her sexuality, the bruised dawn of Monet's haystacks, and the pessimism underlying Constable. I ran full pelt into a world of spirit and imagination where I felt any of the figures were my compatriots. I had nothing in common with other children who appalled me with their high whiny voices and incessant shrieking and their blocked-off brainpower not yet even budding. I identified, with a totality I can scarce describe, with the artist. I danced with the ballet in my mind, I played with the orchestra. Every Beethoven sonata seemed a first person tale straight from the heart of Ludwig, as if he sat in front of me in conversation.


School became an irrelevance and a disappointment. I could communicate easily through my enabler, but didn't want to. I wanted to write down my ballet, think it through in detail. I got so absorbed I got lost within myself. The music was there, a part of me, there I was laid out like a huge multi-faceted rug, turning in tone and mesmerising my mind into losing a boundary somewhere between inner and outer. When I bumped into reality I hated it. I stopped spelling, I stopped eating. I didn't know where I was, but I knew I was lost, and I knew I was very very alone. The dreams of school chums had dissipated. I resented their intrusion into my life and cast myself adrift from society. I was only 6.


In a year at school I had learned that I was not stupid but that I was different, and that I did not fit in. My disability was not understood, my preoccupations were not understood: my peer group were oblivious to me. I had dreamed dreams of being popular, I dreamed dreams of parties and a crowd always around me, but now I pushed them all away, intent on asserting the me-ness of me, the dominance of my art. I heaved a sigh of relief when I was told to stay at home alone and thence I struck out on a lonely path of finding friends. Somewhere along the way I had grasped that I needed to be proactive: the people that are nice to me are not the people I want as friends. The people I want as friends are mature and look straight past me, see only a child with a disability, do not see my music, do not stop to hear my words. I wrote to John Tavener while I lay in hospital being hydrated on a drip because I could not drink, I got into correspondence with a postgraduate student at the Royal Academy of Music. My LEA sought a grammar school place for me, sought to jump me right over juniors altogether. I had immense fun visiting grammar schools. I leapt back into being a confident pickle but was perturbed I could do the maths the 13 year olds were doing when I'd never been taught any maths at all.


I received a knock back when schools didn't want me. They seemed to have the choice of saying no, and say no they did. Then I had the helper I wrote about earlier in this series who insisted I learn about the torture of crip children, and my fear just started to grow again, the fear of being me, the fear of my disability and the attitude of society towards it. I buried myself in my music and built note by note my portfolio of scores that would release me from my loneliness and join me back into the world, but a world I loved, not the brutish big world but the world of the imagination and those that are exposing themselves turning their insides out for public consumption: I set about climbing into a world full of artists.


I was accepted by the Royal College of Music when I was 7, into a specially created place at their Junior Department, that is to say with the students up to the age of 18. Here, I was convinced, I would find pals. But the kids were kids, kids who performed quite beautifully, but kids nevertheless, nattering on about homework this that and the next thing and not art. I lunched with the teachers and made friends with some whom I am still in contact with, and one boy who is now composer in residence at Cambridge University talked to me about Ibsen and tried enabling my yes/no response. It was a fine fine institution but not a spiritual home. I had to leave after two years when they couldn't find anyone to teach me.


Simultaneously with the RCM, the Royal Academy of Music offered me a chance to study alongside the undergraduates one day a week although I was only 8. I bounded into a group of 18-23 year olds who accepted me, included me, debated issues with me, ate chips and beans with me, helped to organise performances of my music, and provided me with the laughter in my life. I thought I would be part of the RAM forever. My tutor talked about nurturing, blossoming, individuality, and wowed me with silly ideas like my publishing my thoughts on Mussorgsky's Picture's At An Exhibition. I was given a student card, use of the library where a ramp was bought to provide access, first refusal on the professors' flat on a Friday night (£7 for 2 of us in central London!), I was taken into more classes and introduced to performance students wanting at their final concert to play some of my stanzas rather than the more conventional old masters. I wrote a German song for Sir Alexander Goehr and I camped in a huddle of tents in my tutor's garden for a poor imitation of Woodstock called Melfest where we had lectures and our music was performed publicly, we had fine jazz to relax to and drummed the wee small hours away at a bonfire at the bottom of the garden. Too much whisky was drunk for everyone to be as chirpy as me in the morning - I had had the best time in my life.


All good things come to an end. After being told every week for a year that I would not face exams and testing, the Academy sprang an integrity test upon me in the middle of a discussion of Stravinsky's 127th bar of The Rite of Spring. I was witless with fright because this delightful home abruptly seemed not to believe in me. How dare they believe I was not the author of my music? I could not believe they could doubt me: apart from anything else, my LEA vouched for me and paid the bills. I ran away screaming down the street howling in despair rooted to the spot in a blind panic of anguish. I was asked not to return until something, I'm not sure what, was sorted and of course it never was. They just sought to get rid of me as a tribunal loomed where my parents were contesting the wording of a legal document every profoundly disabled child has to have - my statement of special educational needs. The LEA changed the wording before the tribunal. The case was never held. My wits, my personality, my trust all changed in a moment and forever.


I wallowed in a mad alician world for more than 12 months awash in tears and fear as brutish nasties and motley heavies transmogrified through waking dreams to deposit me at last o eventually and at last back in a calmer water brought back to rest exhausted by veering madness by Jonathan Raban's journey down the Mississippi. The words made me look out of myself again, and beyond music, the lost world of music. My friends at the Academy were fair-weather friends - 99.9% recurring have never answered letters. The Tavistock Clinic sought to understand what had happened to me, and for the last 2 nearly 3 years the NHS has funded a psychologist for me in Canterbury with funding promised for as long as I need it.


I live a daily life without contact with anyone but my family and one ancient dyed helper who comes in 4 afternoons a week to clean and launder and help with meal preparation and exercising me. She is being removed from her job. The agency no longer want to send her here. It will upset my mother but not me. I am fed up with having anyone around me who is paid. I am fed up with being someone's job, with paying mortgages and building careers while I am served so ill. I do not have high calibre enablers working with me to develop my career. I have instead an LEA who have failed me for 8 years, left me with my mother against our wishes, dependent and uneducated despite the piece of paper guaranteeing to develop my talents and my independence from my mother; I have a doctor who promises to explain me and never does and who doesn't reply to requests for medical intervention from my stressed out parents when my body goes violently awry, or to my letters when I try to communicate with him; I have a Social Services Department who issue a care plan giving my mother an extra pair of hands from 8 till 5 to help with basic personal care and things domestic but we get only about a third of that 45 hours per week and when we query and complain that they are not advertising for staff their Very Senior Area Director tells us to our faces that there is no particular point in advertising because people don't want to work with people like me.


I may be more surrounded by controversy than most profoundly disabled people because I depend upon hands-on help to communicate and have become, through non-resourcing, so peculiarly dependent on just one person but it is not just doubt and scepticism that cause me to feel alone and not loveable. Talk to any disabled person and the issue that looms large is acceptance, the hurt that looms large is the difficulty in making friends: this is the challenge for an inclusive society.


I have a rather wild Ozzie pal who was born with one arm and one leg and is otherwise totally normal if decidedly wacky and delightfully so: generous, funny, intelligent, radical and earning. She spent some months in the US some while back making a video about wannabes (people who persuade surgeons to cut off a limb or who have themselves blown off a leg with a gun because they didn't want it there) and those daftly alien men who prefer the limbless to have sex with, men who are turned on by the stump. She wanted to understand how the limbless felt to be loved - not tolerated or loved in spite of - but where that which is a part of them was not ignored or taboo but was part of their identity and they could feel attractive. I myself feel quite revolted by such a relationship but I can understand how the limbless might crave such a partner. And I have been a speaker at a Scope conference on barriers to equality where rage spilled out from the floor at a world that denies the disabled their sexuality, denies their attractiveness, and denies their lovability. But it shocks ABs to have the truth abruptly thrust at them because you think you mean well. I think the attitude of the National Portrait Gallery in displaying the faces of Britons to admire but denying the disabled a view of their own face by omitting to put a mirror in their disabled toilet says it all: too ugly, too unattractive. And I think this applies in particular to those of us who are chair users, the sensorily "afflicted" are not necessarily viewed likewise, perhaps because they can pass for normal (let's take as an example Evelyn Glennie).


I am so unlovable that people don't want to work with me even for money. Under such circumstances it is more comfortable to cuddle up to my mum and get on with life beside her. Love doesn't guarantee a comfortable life though. My mum can't do everything and forever. My dad and my bro love me but do not empower me to be me. They love me ‚€œin their own way‚€.


Love is fickle and pops up and down at the drop of a hat and unexpectedly. I had a friend for 6 years, the sort of good friend who drops his commitment to a degree course for 6 weeks to help me to travel around the world but who has refused to talk to me since we parted at Gatwick upon our return, has rejected me without explaining why other than expressions of irritation and public embarrassment at my disability ‚€“ the length of time I take in the loo, some bouts of lurching and uncontrollable vocalising that blew up out of nowhere and disturbed me a great deal more than it disturbed him ‚€“ I had to live with it, deal with it, could not walk away - and a scrabbling reflex movement of my left hand I‚€™ve had all my life. And so this best friend now aged 26 who will not respond to letters or sort out things even at the request of a clinical psychologist dropped me because of my disability. Close proximity to me repels people. I was 12. It was not a good lesson to learn. Nothing since has fundamentally changed me into more optimistic.


I am not of course unlovable. People just think I am, say I am and act as if I am.