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 One: Growing Up


In the provincial town where I live, there is a paediatric centre where those wains like me who are identified as being peculiar or broken are followed up, labelled and taught their place. One is taken in and out, in and out, over and over again, week after week, year after year throughout one's formative years. It is a part of one's life to go there. To any intelligent person it is bizarre in its inappropriateness for its function. But then there is, must be, a hidden agenda. I come from the Deep South, the apparently safe and comfortable and affluent Kent, free of famine war and vicious beasties but where apartheid is thriving nicely. People like me are decidedly not de rigeur. There is institutionalised invalidism. Society insists that I am worthless, or at least a great deal less valued than you the able-bodied. It is you who own the world and I am accommodated around the margins.


In millennium year I took steps to change this centre, the centre I attend for physio, OT, where I went (briefly) to a nursery, where I see my consultants. For 13 years I tolerated a system that blew my gaskets because they did not tolerate me: I do not fit in there. I do not fit in because this centre for disabled kids was unadapted for disabled kids. In this alician world where only the special kids go, this world out of sight for ABs, there was no parking for users; there was only a temporary wooden ramp to provide access; the reception, waiting and consulting rooms were on the first floor and there was no lift; there were no hoisting facilities; and even though we now live in an era with the DDA (Disability Discrimination Act), there was no disabled toilet. Yes indeedy, a building for disabled kids up to the age of 18 run by the good old NHS with no toilet on the premises for their clients.


Now before you think that this is a campus building and one must cross one's legs and scurry across a courtyard to an adjoining dept, let me disabuse you - this is a Victorian stand-alone house in an inner suburb at least a quarter of a mile if not more from any other NHS facility and at least that same distance to any public convenience. I used to not wear nappies because I didn't need to. Provided that I could communicate that I needed the loo and provided that I could be got to a loo, knicks were the order of the day from 2 till 9. When I was 9, my parents were having to put me into pads because of being unable to carry me into regular toilets any longer and I then chose and still do to wear a pad all the time and not bother with the hassle of bladder-thinking. However, even a lucky free kiddo like I am now requires not to get entirely sodden and one would have thought that a toilet might be provided for wheelchair users, since they are for able-bodied people.


And when I grew as children do in very predictable fashion (even us weirdos) and my mother could no longer carry me up the stairs, my consultant had to examine my hole-in-the-heart and my painful pelvis and my physical growth by having mum place me on the floor of a downstairs room. This man was a silver-haired 60-something gent kneeling over me with his stethoscope. He was always kind and amiable. But what sort of staff tolerate these kind of premises, this kind of working environment? The managers built themselves new offices where I am told the carpet is so thick it would be like wheeling a wheelchair in soft sand. Why did the disabled kids not get the new building?


There have been occasions when I have required medication and it is normal practice to weigh a patient to ascertain the correct dosage. The scales in the centre were upstairs and could not be brought down to me and my kind, and so my mother would have to supply my weight and it is not usually very up-to-date because to book an appointment to have me weighed seems to be a special favour she requests of the Loan Equipment Store who have a weighing machine for wheelchairs in a building on the edge of town.


During my years of to-ing and fro-ing to the godforsaken paediatric centre, children have become more precious and protected. The massacre at Dunblane led to schools locking their doors. Not so this centre for vulnerable children. Here where I am left in the hall alone and unable through disability to yell out in distress or to shove or push marauders away should such a highly unlikely occurrence occur while my mother zips two at a time up the stairs to report our arrival, there are no locks on the doors or security cameras, here where there's a play-school full of cutey-pie children more vulnerable than most there are no barriers to keep the badmen out, and here rooms are left unattended and anyone can wander in and read the files and paperwork lying around. Noone challenges you. You can take stuff in, you can take stuff out. Is this a fine open door policy? Of course not. This is not a drop-in centre, there is no reason why one might choose to go to this building. They don't advise on rights or the management of disability, they don't provide friendly support groups and social contact. It is just a place to hate. A place to hate because it appears to hate me.


I drew the public's attention to this place, I wrote to my MP and the Secretary of State and the press. And in consequence they have built a concrete ramp up to the door, and a reception hatch in the hall - too high for chair-users and small children but they didn't want to move the electrical wiring which they would have had to have done to make it more user-friendly. There is no receptionist, just a dark hole in the wall.


And wow, they have put in a disabled toilet. But it is not a disabled toilet appropriate for my needs or those of many of its clients. CP is a commoner physical disability amongst children than accident traumatic damage to the spine - the client group of this building are less in need of a pattern-book toilet designed for the independent chair-user (which is what it's now got) than for a toilet where there must be a carer giving assistance and space to lie someone on a changing bench. The centre did acquire a changing bench a couple of years ago. They put it in a communal area. In building the new toilet they have changed things such that the changing bench is still in a communal area but now so hemmed in by new walls giving privacy to other people that I cannot access it.


O joy, what a glorious to-do. I was promised sight of the architect's plans before they were finally approved. It didn't happen. The client group of which I am one itsy representative seems not to have been consulted at all. Alarmingly the staff were, but then we know don't we that they are madly out of touch with the spirit of the times and the notion of an inclusive society. They have allowed a situation for a decade where there is no toilet for their disabled clients and they have sited the changing bench so that I (who am 14 and have breasts periods and all that sort of stuff) must expose my bottom to any passer by.


I must finish this first story by explaining the full nature of the apartheid system. This crap building is where I have to see my consultant regularly. My able-bodied brother has reason to see the very same consultant. His appointments are not held here but at another building 5 minutes away by car where there is priority parking for disabled people, level access with electric doors, a friendly reception and waiting area, scales, hoists, disabled toilets, accessible consulting rooms and better trained support staff. I have asked if I cannot be seen at this more suitable site and been told no. Disabled children have to be seen at the centre that lacks facilities for disabled children. Great feel-good factor there. I wish somebody could explain why.


So ends this first letter from the Deep South, in which I expose the institutionalised invalidism that too often knocks the wind from my optimistic youthful sails and sidetracks me from that which I would rather be doing. Today I wrote about the attitude of the NHS. Part 2 tomorrow/next week will deal with the world of education.