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 Six: Society


Mr Blair's government has been keen on naming and shaming. So far this week my stories have named and shamed the statutory agencies who fail to deliver a bright new tomorrow for me and render me speechless sometimes with fear and rage. The isolated incidents that smatter my life as I move through the commercial world seem trivial in comparison but illustrate the Deep South mentality of institutionalised invalidism that yanks me back down to a nobody from the buoyed up spirits one feels when one sets off on a trip of even a minor sort.


Let me begin with journeys up to London in search of art and music and company. I travel in my wheelchair because I cannot sit in an ordinary seat safely and it can be difficult anyway getting me in or out of a vehicle. We cannot afford taxis, I cannot use the bus or the tube and so trains up to London are only useful if they deposit me near where I am trying to get to. (Mum's incapable of long walkabouts as my wheelchair weighs five stone so she has to push 15 stone everywhere she goes.) But I have to book a space in the guard's van in advance and mum has to bring a deck chair to sit upon. The guard's van is very very noisy and full of vibration. It is dirty and sometimes unheated and there is only a small barred window to see out. I share the space with an assortment of bicycles and I am isolated from other users but I pay a fare for this sort of service. Mum invariably arrives at the other end of our 1-hour jostle and jolt with a migraine that requires injected medication and a lie down.


Luckily the disabled toilet at Charing Cross is the only disabled toilet we know with a 6 foot changing bench - too high for me to use but ok for mum to get less dizzy upon. Perhaps I should digress onto toilets? They illustrate society's attitude towards us very nicely. Many are kept locked where the adjacent AB ones are not. For example in the National Gallery of Scotland in Edinburgh one must wade across the carpet to find a custodian and ask if one might use the toilet, a process my mother finds akin to asking a teacher in one's school days if one may absent oneself from class. It's a snotty gallery with a hushed atmosphere quite unlike its sister gallery of modern art down the road or the o so wonderful GOMA in Glasgow or Tate Modern in London town. Everyone turns their head and it's embarrassing to have to ask again and perhaps again because each time the wait causes me to lose my urge to crap. But the facilities are very nice when you get there.


Getting there was the problem at Coventry Cathedral. There were no directions and the tourist information office claimed there were no toilets. In fact they went so far as to claim that no cathedral has disabled toilets and that one has to go to shopping centres to find them. My mother was very very ill-tempered at having to spend 20 minutes hunting them out after a long journey down from Lancashire. But they did exist. If you read my column earlier in the week you will know that I have attended for more than a decade a paediatric centre for disabled children that has not had a disabled toilet on the premises. Facilities were better than that at the school for abandoned CP kids I visited in Bangladesh. Now ain't that just bananas?


And then there are the so-called public conveniences which for ABs are open access - you just walk in - but for wheelchair users are for club members only: the good old Radar National Key Scheme where you buy a key for £ in advance so that you can go to "public" toilets in just about anywhere. Not much good for visitors or the newly disabled though. I lent my key only a couple of weeks ago to a befuddled desperate man in a wheelchair trying to get into the Gents behind the library in central Canterbury. If you follow the sign to disabled toilets in Faversham you will find them similarly unavailable to non-club members. Likewise Craignure on Mull, Kenmore on Loch Tay, Charing Cross Station, Wigan, etc etc etc etc etc. Motorway service stations are obliged to be open 366 days a year and have to provide toilets but even some motorway service stations "facilities for the disabled" eg Hilton Park on the M6, Gillingham (Farthing Corner) on the M2, are open only to club members, although there has usually been a person at the cash desk in the sweet shop who will come and unlock it if you just wait a minute or two. I am surprised this has not been taken up as an issue by the DRC. It's not exactly equality of opportunity is it? I know that they are kept locked so that they are not vandalised (well that's what I'm told anyway) but I've never seen any vandals at Craignure on the Isle of Mull so I'm not sure that I believe that that holds water. It's just become a national habit locking up disabled toilets and it's high time they were freed.


Still on the subject of toilets, lavs, loos etc, I had an interesting day a few months ago when Westminster Social Services invited me to give a talk on communication to some of their social workers and I decided to fill in the rest of the day at the National Portrait Gallery. In neither place did the disabled toilet have a mirror in it. I sent my mother into the AB toilets to check out the difference and she found wall to wall mirrors in the NPG. Now I wonder why people don't put mirrors in disabled toilets? I wonder why this is the moment they choose to economise? I don't suppose it even gets discussed. Surely otherwise two such organisations would try to be PC, and being PC, would supply a mirror, even a tiny little one?


We're ugly. It's a pain to have to see us, so surely we don't want to look at ourselves. We're so ugly that what does it matter if our hair's knocked squiffy by the wind or we've got smudges of dirt from the train journey like war paint across our faces. I look at all those faces in the NPG. I must not look at my own face. A national institution thinks I oughtn't to. The establishment so recently modernised rejects the notion that all faces, all portraits can be looked at. Some of us are just unacceptable. It shouldn't be allowed. Little issue? Or exposing the subconscious below the pc?


It is commonplace to find disabled toilets in large stores. It is unusual to find them well-designed for us individuals with inflexible cursed bodies. For example Ikea at Thurrock has a mirror but at standing height so I can't see myself at all, a hand drier that is above head height where it is too difficult to stretch one's useless arms and a bin that is operated by a foot pedal, all leading one to suppose that the sign on the door of a pin person in a chair represents a mythically fit and able, possibly an idealised disabled person. Surely it can't be true that they can't stand up, can't stretch above their heads, surely it can't be true that some have paralysed legs? There is a thoughtless lip-service, a horrid horrid thoughtlessness abroad and everywhichway.


Back to trains. We don't often travel by train because it's so difficult and horrid but in central London the orange/blue disabled parking badge has no validity and so parking becomes next to impossible. You see, because I travel in my wheelchair, we have a higher top vehicle than a car and in central London it doesn't fit into multi-storey carparks. Even kindly places like the ENO who have negotiated special rates for their disabled customers at the nearby National Car Park are unable to help. Half an hour on the phone to National Car Parks (various depts and bits) produces nothing other than we don't fit in, every time we phone about whatever car park. Luckily the supervisor from the agency that provides the SS support to my family here in Kent has an ex-husband who is a London fireman and London firemen are ever so ever so nice with the consequence that for several years off and on we have been welcomed to station yards here and there for a few hours parking, eg, when I was invited to lunch with that well known disabled activist Mr Blunkett, and his department could not help with the parking arrangements. Incidentally, Westminster Fire Station has a very nice disabled toilet.


New York is the reverse of London - inaccessible taxis and o so wonderful accessible buses, buses like you've never dreamed of. Please take note, Mr Livingstone, of the New York buses. You wander up in casual fashion to a bus stop, in my case in Harlem on a Sunday lunchtime in the depths of winter with snow on the ground. You wonder, you really do wonder if this could possibly work. I have never in my life stood at a bus stop and waited for a bus. It is so incredibly exciting to be normal. Five minutes or so went by and along it came. The bus driver got out of his seat and walked down the aisle to the rear door, pressed a button and hey presto, the 4 or so steps electrically magicked themselves into a flat surface to be descended to the ground for me and my chair. Another press on a button and up I went and my chair was strapped into a designated spot. I told the driver where I wanted to go and gawped out the window at New York, New York in the shining sunshine. There was a change of driver, the message got relayed on efficiently, I was let off at the Guggenheim and felt as free as a bird. I was one of you. I was included. Life was a doddle, life was fun, and life was good.