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 Four: The Big Wide World Outside


Beyond the authorities is the commercial world of the High Street, work and travel. How do they treat me, the would-be artist, the bright young thing with aspirations? I'm a teenager, the time when banks traditionally try to catch us, give us goodies if we open an account, when the world opens up as we begin to jaunt about independent of our families. Advertisements encourage me to plaster myself with make-up, get into fashion and the latest celeb goss and fill my life with indispensable technological goodies such as mobiles, mini disc players etc. If one thinks of the future one plans on being a student, maybe taking a gap year to travel, getting a job to fund one's lifestyle, and learning to drive. O and one notices hunks everywhere one goes. Hormones surge around and one's body changes shape quite a lot. Childhood is left behind.


I'm on a reverse journey, a journey where life becomes more constraining and I am ever more dependent upon my family. I'm heading despite all my best efforts and those of my family towards a future of dependence on state handouts and life on a poverty line of miserable benefits. I rail against it. I want a life that feeds my mind, nurtures my soul and allows me the feelgood factor of giving back.


When I was 10 I set up a webzine of experiential writing and when I was 12 said periodical had been reviewed in the Independent most favourably and was up for a prize in Sydney. Although my LEA had provided internet facilities at home and helped to get the zine off the drawing board and onto the net (ie they organised for the first edition to be published), they wouldn't replace my computer when it broke down or supply the software I needed to become more independent. They had a plan instead to send me to a residential special school, a plan opposed by those professionals who advised them, and I in consequence was driven into a nightmare world of fear and confrontation. But instead of running into depression as I had done previously, into a pathetic heap that required a great deal of time to escape from and which left its own scars and festering sores, I dreamed dreams of a more physical escape. I would go around the world.


I dreamed hopeless dreams of seeing a spot of this and that and being inspired by grand landscapes and picturesque cultures. Now I had to turn dream to reality and run a mile from home, escape the horrors and fear. I wrote a list of what I wanted to see, a sort of bare essentials, a sort of quite minimal list that I regarded as quite do-able. It was definitely necessary to see a bit of Africa, a bit of Asia, and a bit of America, as well as Australia.


The first constraint caused by disability was of course time. I had to take 2 carers with me, one of whom would have to be my mother. I couldn't just romp off and travel as an unaccompanied minor to host families here and there. But I have a brother who was then only 14 who didn't want to come as 2nd carer and who didn't want his mum away for months and months. My friend Tom offered to take time off his master's degree to accompany us, but he could only be away 5 weeks. In addition, my planning time was seriously short: they told me on the last day of November that I was a prizewinner and the prize giving was in mid February in Australia, by which time I had to be half way round. I had no desire to be a tourist on a package even if I'd been allowed to be. I wanted to be more immersed in life and in contact with those who live there. I also needed to feel safe and for the profundity and complexity of my disability to be planned for. I decided I had time only for a week in Tanzania, a week in Bangladesh and a week in New York, with 2 weeks in Australia (heaven alone knows why). I wrote to the heads of international schools explaining my special journey and they were kind enough to find me accommodation.


My mum worked out an initial costing. I reeled. I was a naive fool! Disability costs a huge amount of money. One unaccompanied minor could have run hither and thither for a fraction of the costs for me. There are no concessions for disability on airlines: taking 2 carers simply tripled the costs. Doctors had to negotiate for my baggage - my incontinence pads alone weighed more than my baggage allowance and I needed 2 wheelchairs and a certain amount of other stuff too. The whole thing was more like an expedition than, as some people termed it, a "holiday". At being told that it would cost £13,000, my dreams fell apart into pathetic blubbering (not visible, I don't cry real tears, just part of my disability). My mother didn't pause. "It's going to be a tough job raising the sponsorship in such a short time." I instantly stopped feeling sorry for myself. She was suggesting we could raise £13,000 in 4 short weeks. She wasn't saying no. OK, OK, what do I have to do, my mind raced into the highest gear it's ever been in. Christmas was a rollercoaster of excitement and fear - fear on my mother's part that we would go (she gets very very travel sick), fear on my part that we would not. We did. I wrote to the chief executives of all the top UK companies enclosing a carefully laid out, poetic, idealistic, costed plan neatly bound with 2 referees and a cv etc. I had something like an 80% response rate - personal letters of encouragement and a handful of big donations. I had told them I was just like them - ambitious, determined, impatient to get on in life - that I couldn't just sit on the sea-front at Margate for threescore years and ten because I was disabled, and they responded and took me seriously and helped me organise my dreams into reality.


I made something really huge happen. Over the next 6 weeks I achieved nearly all my targets: mum drove me into a herd of 200+ elephants so I could see them without the aid of binoculars (which I can't use); I talked to local people about poverty and ambition, water supplies and education; I visited a centre for abused street children, a cholera hospital, a malnutrition rehabilitation unit, talked with workers from unicef and the World Food Programme, diplomats, teachers, doctors. I made friends with a woman who has set up a centre to rehabilitate those Bangladeshis who break their necks carrying too heavy a load upon their heads, or their backs when they fall out of fruit trees or are involved in accidents in baby-taxis and rickshaws. I met the therapists, the patients and the staff whom she inspires and I learnt how one person can make a difference.


I was treated to some wonderful elitist moments - an evening of classical Bangladeshi music and dance given especially for me by well-known professionals in their sphere, a closed rehearsal at Sydney Opera House arranged by my friends at Glyndebourne Opera and an introduction to the staff and a dress rehearsal at the Met in New York. I took a walk in a rain forest and got leeches on me, saw a huge snake curled up asleep and a hand-sized spider on my bedroom wall (these all in Oz). I went on a river trip into rural Bangladesh, I shopped in local markets and the local equivalent of Tescos whatever that happened to be. I saw termite mounds and acacia thorns, I broke down in the back of beyond somewhere between Nairobi and the Tanzanian border and feared for my life in a most silly fashion. I was hospitalised in Sydney and missed my awards ceremony but I suppose that's life. I would have liked to have heard the applause. I spent a day with a truck driver on Staten Island, a day in Mollie's slum house in Dhaka, a week with radical feminists in Oz; I went to Harlem for a church service and spent a day at the NYPD. I met an aussie surfer dripping surf, I saw wild sulphur crested cockatoos in my dad's godmother's garden. I had a whale of a time turning into a new sort of person who did not leave art completely behind but returned strongly identifying with Dr Schweitzer and a duty to do my bit towards the greater good, to which end I am being encouraged by Kofi Annan whom I asked for a meeting with in New York but where sadly I fell asleep next to him on the sofa in his office on the top floor of the UN building, exhausted, utterly exhausted by what I had put myself through.


I didn't want to return home to the Deepest South of East Kent. I wanted to work for clean water supplies and adequate drainage and sanitation for people in the poorest countries where I was so horrified that they were au fait with mobile phones and had electric lights and fans in their homes but no access to safe water. It scared me, the lack of infrastructure and the hazardous nature of life elsewhere. I longed to be at home in safe safe England where there are no violent wars and demonstrations, no horrid diseases and famines, dangerous animals, flash floods, etc. I wanted with the idealism of youth and new converts to wake the world up to how lucky we in England are, especially those of you who are able-bodied. I felt I knew my place in the world.


But I am sure you will recognise the loss of momentum that accompanies a return home, and a falling back into the normal patterns of life. I feel unable to change the world until I have taken charge of my own life and I seem to be unable to achieve that result because I am hindered not helped towards my goals of a self-determining adulthood. What destroys me here is the system that is designed to help me. More years of assessment, more forests of paper. Tomorrow I will explain how the agencies of the state protect budgets so that I am not resourced. In the meantime I want my mind to sing a while longer around the most excellent memories of my journey around myself and the earth.