THE THWARTING OF DREAMS by HERO JOY NIGHTINGALE firstname.lastname@example.org
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 Three: Living in Fear of the SS
Last time I touched on the nightmares I have had since a man appointed by the authorities to have control over my life demanded that I learn about the torturing of crip children. Fear of the authorities growed and growed. They have the power to make life easy and help me towards my potential; they have the power to thwart and frustrate. In my particular case, I feel they have abused their power and harmed me.
There is a general acknowledgement that I come from a comfortably middle class family. My parents are both Oxford graduates and upstanding moral sort of citizens. My dad is very senior at the local university, on the administrative side not the loco prof side, my mum chairs a charity in her non-existent spare time. They have lived in the same house since they were first married 22 years ago, a semi-detached period house with a big garden in a nice enough suburb of a cathedral city.
My parents proved themselves odd by asking for support from the Social Services after my school placement broke down and I was at home all day every day and suddenly wholly dependent on my mum again. The LEA supplied a man for 20 hours a week to take down my music that was dinning around in my head but noone to share the enabling of my communication as they had done at school. The SS refused to provide any support, Children's Act notwithstanding, ie technically they offered help but not help that my parents found acceptable. The only option on offer in the Deepest South was removal of the crip child from home. No support was on offer to keep the cute crip child at home, even tho the LEA was supporting me there. They at the SS simply had no sense that home was the most appropriate place for me, little me aged 6,7,8. On the one hand, education officials and health experts described my o-so-unique specialised care that could only be delivered by trained personnel and on the other the SS insisted that anyone could look after me and I should be elsewhere if my mother could not manage me alone and 24 hours a day. The SS refused to help even when my mother became ill with exhaustion.
They find it easy to criticise. They don't care if they build fear in a crip child. One summer's day a social worker came round and took up a position in the garden. She said that I was not to read the books the LEA supplied. She said that my mother was not to supply any books for me to read. She said that only she was to decide what I was to read and that she would draw up a short list. She said that I was not to be allowed to read for more than a set amount of time and that she would determine how long. She did not ask how much reading I did or what I wanted to read. She was not interested in what I liked. I was very very scared. My mother was not allowed to have control over me. This total stranger who had just arrived was to have control. I scarcely read books at all because I have a great many problems with a dystonia of my gaze and I prefer to spend my time doing my own writing and art and so on. I veered away from controversy. I have not read a book since that day. And noone in 6 years has bothered that I don't read, other than my mum, who doesn't count.
The actions they approved of were those that I did not at all approve of. They put in a carer from an agency for a few hours for a month while mum was ill. I found out what I was supposed to do all day. I was taken out to the shops a great deal, and was stuffed full of chocolate bars and ice cream both during the morning and during the afternoon while other children were at school. I was taken to watch diggers at a building site. My mother was criticised for not allowing me more than 3 bars of chocolate a day.
The SS did a secret psychiatric assessment of us that the ombudsman told me about some years later and the psychiatrist, who never met us, concluded apparently that we should be treated as sane and resourced according to LEA and SS promises. My parents kept up the pressure for support at home until schooling was offered. The SS said they could only provide something if my parents paid a whack. My parents argued throughout that I should be in school and that while I was not being resourced by the LEA for unfathomable reasons (later found to be 4 years of injustice for which compensation was paid, the princely sum of £2,000), then they should not have to foot a bill. Eventually county policy was changed and we got domestic help while mum continued to have to have responsibility for all my care. When she again got exhausted, my bro was off school 3 weeks looking after me and her, and neither of us got any education. However the SS carried on paying for the house to be dusted. I sat in a sodden nappy my mother had no strength to change while the able-bodied fit healthy adult hoovered around me for 3 hours a day.
I lived in fear of being taken away, but that reality came closer from an unexpected quarter. My LEA turned against me. Despite advice from my longtime consultant paediatrician that a residential placement would cause serious emotional harm to me and from my longtime occupational therapist that a residential placement would place me physically at risk because of the complexity and distinctiveness of my care needs, my LEA decided in 1997/8 to remove me compulsorily from my home and not even allow me back at weekends. They had no advice that this was a good idea. They had years of advice that my needs could not be met by such a place.
My LEA had funded me to study with the undergraduates at the Royal Academy of Music when I was only 8 (a place sought by them and obtained on the basis of my portfolio of scores), my LEA had sought a grammar school for me when I was 6. But when I was 11, they decided it was appropriate to stick me in a place miles from home with no one-to-one assistant to enable my communication and in an environment where many people had sensory and intellectual impairments and the oldest student was 15. They decided this was appropriate for my "intellectual, social, emotional, physical and spiritual development" and despite, as I have said, the most extremely worded advice from my health experts. Sir John Tavener is my godfather: it verges on the absurd as well as being offensive that my LEA knew of my friendship with John and my religion was identified on my statement of special educational needs and yet they stated that my spiritual needs could be better met by them.
It strikes terror into one that the authorities pay no attention to advice, that they do not follow procedures laid down in law. I've seen documentaries and films about and from the Deep South of the USA. I've been reading Gary Younge's book about those that rode the buses in the civil rights protests in the 60s. I call East Kent the Deep South to access those images of fear and injustice in you the reader. The violence is just more subtle here and now with me.
It took a whole academic year to overturn the plan through due process. During that year they refused to develop any new provision for me and refused to implement my statement of special educational needs. So I continued to go without education and care support, continued to be dependent upon my mother. They refused to replace equipment that broke down and refused to discuss things at meetings. Amazingly the ombudsman decided that no injustice had been done to me in consequence of any of this and that it did not matter that the statement was neither implemented nor reviewed as the law requires.
I therefore learnt not science and maths, French and geography but that I am outside the law of the land which requires that all my special needs must be met and that I must be educated. I have now been 8 years without education and without my SEN being met. Everyone from the Prime Minister down knows my case. The professionals who know me best have this year asked the Secretary of State for Education to replace my LEA as managers on my case. He has the power to do so and I hope he will. I need to take charge of my life and stop living in fear, I need to feel supported and empowered, and encouraged in my aspirations to earn a living and to go places, lead a life, make a contribution.
I need it understood that I belong in society and not in an institution. I need the Deep South to begin to be ashamed of itself.