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 Seven: Adulthood Here I Come


It's a hazardous business trying to work as a freelance and best done when one has experience under one's belt, but what choice have I got? As things stand, I can't go to university as I have no education and no ability to take exams, as well as no inclination to follow a structured course that would entail my doing what I am told and specialising in one subject. I can't take a gap year because there's no gap - no school, no university - although I would very much like to travel some more, see other places, talk to other people. I cannot, being dependent upon my mother, obtain salaried employment. I cannot take a series of casual jobs. What choice have I other than occasional freelance work and life on benefits?


But there's no market for me to be anything but disabled, noone is interested in anything I have to say, other than curiosity about me and my disability - the perennial questions about how I communicate (if you're adult), and how I go to the toilet (if you're under 10). I cannot hide my disability, and why should I when it dominates my life and is a central part of my being me. When I first got on the internet in 1997 I found I could be anything I wanted to be and that I didn't want to be anyone but me. It's hard work concealing even one's age as I tried for a few months to do. Talking of age, I'm sure every woman of a certain age knows how they were only supposed to cover certain stories - well done Kate Adie, well done, for breaking a mould, and black people, could anyone take a black person seriously as a newscaster - yes of course they can, now. The world has moved on, let's shift it on even further, let's allow me a life where I can discuss anything and still be taken seriously: I want to escape my preoccupation with self.


I have been elected already to the Society of Authors on the basis of a contract to write an afternoon play for BBC Radio 4. But I haven't actually written the play yet. I was offered £60 per minute for a 45 minute script this time last year but when the contract came back for final signing the inde who had the commission omitted a clause that had been in earlier and wrote in a covering letter to my mother that I could not be paid to rehearse the person playing me because my disability precluded my attending rehearsals. I went to the DRC who advised that their behaviour was totally illegal if at the time of writing the letter they had 15 or more people under contract, and totally legal if they had fewer. The inde pulled out of the contract altogether and I wrote in protest to the BBC because I found it outrageous that a huge institution like they are commissions programmes about disability from companies that practise discrimination against us. They responded by taking the programme in-house but apparently I now get a much less good rate of pay, around £20 per minute, so I'm not a winner, am I, and the transmission date has moved from September 2000, to March 2001, to April 2001, to who knows when?


Am I supposed to take it all lying down? My personality makes me an active not a passive person but I don't want to spend my life fighting battles all day long because it is so wearing, so stressful and such a waste of time. I do not feel that my natural forte is as a disabled activist. It is an irritation to me that things need sorting, but I don't trust things to happen if I don't help to make them happen. Someone has to point out to people what's wrong, give the user feedback, try to effect necessary change. And make no mistake change is very very very necesssary, at least here in the Deep South (my mother's native land may be heading in another direction).


I went to discuss my financial affairs with my building society. I have had an account with them since I was a very small child and put in all my savings cos I like saving and I dislike spending money. I'm a rainy day person you see. When I was given £2,000 following the untimely demise of a very nice Oxford physicist who had promised to become my godmother, I spent two hundred and something on a handsome small chest of drawers that was both beautiful and functional for me and would be a daily memento and I banked the rest. As part of the taking charge of my life that this year I am embarked upon, I went to talk about rates of interest to the YBS. My mother explained to the woman behind the very high counter that I wanted to speak to her. She replied that they normally found it unnecessary to talk to wheelchair users as they were usually with an able-bodied person whom they could talk to instead. She made no effort to talk to me and we left. I wrote to the chief executive about the incident and received an apology by return of post and also one from the branch manager and a promise that their services to disabled customers would improve. They have indeed put in an electrically operated door with a disabled access button, and that is a more obvious change than Habitat in Canterbury have managed.


Habitat last year refused us permission to visit their upper floor saying that the service lift was uninsured for disabled people. I wrote to the chief executive and a long long long time later got a letter thanking me from a customer services person saying that we had been wrongly informed and that the lift was available to disabled customers and that staff had all now received further training. I wrote back saying they must tell customers about use of the lift by having a sign on the door or counter to this effect. After another long long silence, I heard back that they had designed a new sign with the corporate logo for all their stores. I had (so I thought) reason to visit Habitat a couple of months ago. My mother asked to use the lift and was refused, being told there wasn't one. She insisted and they called an awfully young looking manager who said the lift was unavailable and it might be better for us to go away and come another day by prior appointment. This is not at all what I take to be compliance with the DDA and it caused a nasty scene with everyone staring at us in the sort of way that makes an adolescent cringe. I feel like not ever ever going in Habitat again, a total lifetime boycott but I can't bite off my nose to spite my face, I have to find a way of changing the world such that these sort of incidents become fewer and fewer and further and further apart. I thought I had won a battle for all disabled people, I was very proud of myself - new happy-to-help signs in all stores, people pointed in the right direction without having to ask, etc - and the reality on the ground was the same Deep South mentality of "you have no business here" of having to walk away empty-handed from one of the most modern stores in town.


Canterbury is mediaeval. It's got silly quaint streets which have been cobbled during my lifetime to make them attractive to the tourists the town despises and unbearably noisy and rough for me. It isn't just the jolting, it's also the noise, the absolutely horrendous noise that my hypersensitive hearing shrieks at. And there are steps up to the shops, and staircases within them. Well-known High Street shops such as Debenhams and Waterstones are largely inaccessible, because, they explain, the local City Council will not let them put in lifts. There is a policy of preservation that prevents life being lived, a policy that puts the preservation of bland interiors with escalators ahead of my rights and needs. Mediaeval.


Even at an ordinary evensong service in the cathedral, they insisted we left before the end, because mum needed to sit to my right and they could only accommodate us in a pathway and we had to promise to make ourselves scarce before the choir processed out. This is not a way to welcome me - you can only come in if you leave before the end. But then my local C of E vicar won't even come to visit me. I wrote to 25 local ministers from a variety of denominations asking to discuss life with them and religion. Not one would visit me. Many did not even bother to reply. I was extremely upset. I thought that ministers of the cloth would be accepting of me, I thought that was their job. I was sufficiently incensed to write to the Archbishop of Canterbury and he himself came around to talk to me, accompanied by a bishop and his private chaplain but it was one of those "treats" one gets. He said I could call him George and he was my friend and he would come back again - all easily said, and meant when uttered - but he hasn't, and he doesn't reply to letters, even letters he asked me to write to him about poetry.


I joined the Orthodox Church. I was indulged with a wholly personal service conducted with gentle amiability in his private chapel by His Eminence the Archbishop Gregorios of Great Britain and Thyateira and a whole entourage of caring chanting ceremonially robed priests. John my godfather spat most magnificently when he had to renounce the devil, the problems of total immersion were overcome to everyone's satisfaction and Patricia Rossario sang a surprise gift of a song from John before we all high-tailed off to a hotel for scones and tea, a Greek pianist and chatteroos. I had found a spiritual home, somewhere that accepted me.