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 Two: The Means to Think


I live in a Deep South, a place where I am a second class citizen routinely and thoughtlessly downtrodden, a place where half the time there is not even lip service to equality of opportunity, or interest in actualising my potential. I am easily identifiable as one of them, one of the out-group, a freak given teddy bears and treats, living in a world where intelligence in a disabled person is something remarkable and, quite without meaning to give offence of course, as something that makes us still lesser - a clever disabled person is not seen to be as clever as an average AB.


This hierarchical structure is institutionalised to such an extent that the biggest local secondary school apparently divides children this way with no criticism from the Ofsted inspectorate, who do however criticise their sexist practices. As explained to me by a parent of a child there, the year group is divided into streams: one or two at the top are grammar streams, then come three or so classes of ordinary/normal/mundane ability, and then there come three special educational needs streams. According to this parent, her child with dyslexia cannot rise above the top SEN stream, and all children in her child's class have SEN of one sort or another. There is clearly no such thing as a grammar stream kid with SEN, notwithstanding the fact that I myself know of a young man with a hearing impediment and dyspraxic coordination problems who has been doing just fine in a local grammar school. Mix 'em all in with each other, and separate them from the ordinary kids, and say that everything's working towards inclusion: I don't think so.


One system for us and one for them. I have told you in my last column of the paediatric centre where disabled kids have to attend clinics and how I have observed for 13 years - nay, experienced first hand - the absence there of facilities for the disabled - no toilet, hoist, lift, consulting bench, scales, permanent access or parking, while able-bodied children attend a clinic with the same consultant in the same small town in a building with all of these facilities.


This topsy-turvy thinking pervades my life but before I give yet another example to shock you into disbelief, you readers who run these places, these systems, you upstanding, thoughtful, well-educated salaried staff and decision-makers, you AB ABs (if you catch my drift), before we turn towards my personal anguish, how about a bit of semantics? What do you call the act of discriminating against someone with a disability? This is now unlawful but the thinking around this issue has just not caught up with this fact. We have a Disability Rights Commission. What does it examine?


I have coined the word invalidism because that is how I am treated. If I look at my dictionary it says "invalid: without validity, efficacy, weight or cogency; having no effect; void; null. disabled through injury or chronic sickness. a feeble, sickly or disabled person."


People who practise invalidism whether deliberately or unconsciously assign to me not merely no weight but all too often treat me as feeble and ill. For example, last year neither the NHS nor the SS would help me to escape the confines of my home by guaranteeing me an appropriate wheelchair so to do. I was told that my expectations were over-high. Show me a well teenager anywhere in the UK who should be boxed in by their home. But it is appropriate apparently for me, and inappropriate for the state to expend money to solve my problem, which required only that they provide a larger size chair of the same sort as I was currently using, which was an NHS chair.


The psychological impact of dealing with invalidism can never be over emphasised. One cannot escape being disabled, like one cannot escape being black or female, but one can be just a tad more vulnerable.


Negroes became blacks, they appropriated the words of abuse and claimed ownership of them. Likewise crips of a radical sort. I hate the word disabled because of its negativity. It is a negro word, a stepping stone between nigger and black, enshrined now in legislation so we're stuck with it. The word handicapped does not suggest negativity to me, it suggests ability and normality and a stacking of the odds against someone, a problem one must circumvent or overcome, cope with or otherwise handle. It is a word used in sporting circles and is therefore plucky, game and about setting opportunities to level a playing field and my having a sporting chance of success. Handicap suggests compensate, an acknowledgement of a burden, and it suggests one pool of players and it is therefore a word that is inclusive. But that's only my opinion.


Personally, I favour the word crip, derived from cripple: a person damaged, disabled or deficient in some way. Crip is modern shocking and accurate - I have some sort of deficiency, I am a person. It's nice because it's simple and it doesn't have other meanings. However I'm not allowed to use it. UNICEF commissioned a piece from me for a special edition of their magazine for education workers worldwide, an edition on children with disabilities. All the other articles were from professionals, I was the lone voice crip child a spoilt western brat sandwiched among tales from Sri Lanka, Brazil, Azerbaijan, Jamaica, Cote D'Ivoire, China, etc etc. There was much discussion on inclusion and all was firmly placed within a context of the UN Convention on the Rights of the Child, and the Salamanca Statement of 1994. The editor wrote to me that the article I wrote could not use the words "cripped" or "crip". I objected. The editor compromised. She changed my wording to "crippled" and "cripple" and put "(sic)" after it each time, and thus it was published without my prior knowledge. My words for myself and my kind are not acceptable to AB's.


Cripism is a special word to me, much too special to be given a negative connotation, and I therefore suggest it as an equivalent of feminism, as the thing one signs up to if one is right thinking, with invalidism reserved as that which is spat out as an accusation in the same way as sexism or racism might be, as something nasty, illegal and shameful.


So, on with the description of invalidism here in the Deep South of East Kent. What other experiences have damaged me into political awareness? Have bellowed different world, separate development at me?


My LEA back in 1993 appointed a man to be my enabler. They rolled up all the roles into one job: tutor, one-to-one assistant seeing to my physical needs delivering the complete care I need, and director of studies too, determining where I went and who I talked to. He was my passport into a grammar school. Although I was only 6 my LEA sought a link with a grammar school for me, a base within their walls rather than a conventional placement. They had decided I was bright! They appointed this graduate to introduce me for 2 lessons a week in the first instance and the rest of the time to take charge of me elsewhere.


I didn't want a man. At the time I could not communicate, eat or drink, draw or participate in any activities other than by sitting on a lap, so that an adult could give the hands-on help I needed. This man was imposed upon me and I was obliged to envisage 6 hours a day during which time he would have sole and solitary charge of me, a little girl aged nearly 7 who cannot cry aloud my distress, who has to sit on a lap to communicate anything at all. I did not want to sit on a strange man's lap while he decided the course of my life. My brother returned home from his school with stuff about saying no to strangers or close contact that the child does not want. I was not accorded this respect or choice.


I was given work to do by this man. I was expected to research an essay on the holocaust and spoil my tender years sweet dreams with tales of torture perpetrated on crip children like me. This is what was appropriate for me. This was my place. It's OK to terrorise and scare the vulnerable little girl. It's what the authorities wanted to happen to me. Luckily the man was left-handed and was soon taken off the job as unsuitable because of it.


I am a child who cannot cry out in distress. I still want an explanation of why everyone thinks it acceptable for a man to take charge of a little girl like this. Is it? Is it OK to take a helpless crip child and sit them on a man's lap and give that man authority over all aspects of that child's life and not supervise that man and for that man to teach about torture and killing of crip children? Do you really think that acceptable? In all the intervening years not one person from the LEA or the SS that I have carped on to about this has said that it was a bad decision. Not one. And therefore I grow up, unstupid, quite aware of the fact that this would be seen as unacceptable for an AB child who yelled and screamed and said no, but me I am not taken seriously because I am a crip child. I can pretend all I like to be like other kids and dream dreams of living in the real world but I am never made to feel of the same worth. It doesn't diminish, this rage, because nobody will help me to put the event behind me by saying I deserve more, or I deserve choice, or whatever. I am made to feel that I have not yet learned my place, my place at the bottom of the pile.