He went on with a nice flourish: ‘What I say to all our residents — I say “resident” however short their stay may happen to be — is that this is not a home, this is your home. You are what we exist for. You are our whole purpose. I may be called the Director, but I too buckle down and have been known to help with the washing-up!’
As he spoke he held a propelling pencil over a printed form. I’ve always coveted propelling pencils but can’t properly manage the rotating mechanism that extrudes the lead. I have something of a talent for breaking them. The rotation factor does for me every time.
Mr Giles asked for my name and address. ‘Which address?’ I asked. ‘Bourne End or Downing College, Cambridge?’
This wasn’t very coöperative of me, since Gerrards Cross wasn’t near Cambridge and I had applied through the good offices of the High Wycombe local authority.
‘The permanent one, please.’
‘They’re both of them temporary, but I’ll give you my parents’ permanent address.’
‘If you don’t mind.’
Mr Giles gave the hand holding the propelling pencil a soft shake, to disengage the cuff-link which was snagging the sleeve of his jacket. He asked for the details of what I could and could not manage without assistance. Did I have any special dietary needs? I said I had a very ordinary dietary need, which was that blood should not be shed in the process of feeding me. I pointed out that someone with my physical limitations would be much more likely to need help if he ate meat, hacking at the fibres of tissue as tightly knit as our own. He pursed his lips but made no reply.
Then I started on my own questions. ‘Thank you, Mr Director, for making me welcome. Perhaps you can tell me where my locker is.’
‘Your locker?’
‘Where I can keep private things safe and secure.’
He looked doubtful. ‘If there’s anything special I suppose I could keep it for you.’
‘So residents have no privacy?’
‘People come here for respite. For comfort and quality of life, not for privacy as a be-all and end-all.’
‘I can’t help feeling that privacy is part of the quality of life. Are the bathrooms lockable?’
‘That wouldn’t be appropriate. It is in the bathroom that many of our residents need most help.’
‘Well, I don’t.’ It was true that I didn’t need help to go to the lavatory as long as I could use my bum-snorkel, though bath-times were a different matter. I wasn’t planning solo acts of dunking with the help of a hoist. I was expecting full use of the facilities, viz. nurses on tap to make bathing a smooth and convenient process. Leonard Cheshire would expect no less. That was his whole idea, to have certain things taken for granted — and why shouldn’t privacy be one of them?
The fuss I was making about this issue was purely symbolic, in the sense that I had brought nothing with me that needed protecting. But I had got used to the idea of a lockable door. There was a principle involved — why shouldn’t another inmate, less accustomed than me to standing up for himself, have somewhere to stow his girly magazines or the diary in which he vented his loathing of the staff? ‘I’m confident that you have a lock on the bathroom in your home, to prevent Mrs Director from trotting in at a moment that would not be appropriate. This office, too, seems to have a lock …’
‘You’ve made your point, John.’ I don’t know why people say that, when all it means is that you have articulated very clearly into an ear which is sealed against you. ‘We can’t hope to provide an environment tailor-made to suit every individual, however much we pride ourselves on our quality of care. You have high standards, which is all to the good, but perhaps there should be a certain amount of adult compromise. Of give and take. You should take us as you find us.’ Another vapid formula.
‘Certainly, Mr Director. And perhaps you will take me as you find me.’
An abrasive little charmer
It was intoxicating, it aroused my baser nature, to be dealing again with people who had undertaken an obligation, after so long negotiating daily life in an undergraduate setting where nobody owed me anything. Finally I could let it out, without too much fear of the consequences, the rancour of dependence.
The Director’s propelling pencil descended again on his form. There was still a lot of blank space on it — I didn’t need ‘toilet attendance’ and I could eat for myself. Staff weren’t even expected to administer medication in my case. In those respects I was a model of the undemanding resident. Yet the pencil descended on a box near the bottom of the form and wrote a single word.
In CRX days I had taught myself to read upside down. It was far the best way of keeping track of what was going on — the medical staff played their cards very close to their chests. I hardly needed that skill, here in the Director’s office, to pinpoint the word he was writing down as a summary of my character and attitude. He wasn’t writing down, ‘An admirable resistance to institutional conformity’, or even ‘What an abrasive little charmer!’ but simply ‘Difficult.’
Presumably all the residents had been given roughly the same speech of welcome. They hadn’t been tempted to take it at face value. If they thought of themselves as being at home they kept it to themselves. They behaved like prisoners who had been told that if they behaved themselves they wouldn’t actually have to slop out their cells.
I was shocked by the cowed atmosphere at meal-times. I know male undergraduates are boisterous and no reasonable point of comparison for a dining room full of disabled people, whether fully resident or in need of respite. I felt I could screen out the variables. This was different. This was a roomful of people, most of whom couldn’t walk, trying to live on tiptoe. This was numb despair, chewed thirty-two times and mechanically swallowed down.
If the Director called in on the dining room people would actually eat faster (both those who needed help and those who could manage by themselves) as if to ingratiate themselves with him with a show of appetite.
Early on in my stay I was trying to strike up some conversation when everyone went quiet. ‘What’s the matter?’ I said. ‘Why the two minutes’ silence? Armistice Day isn’t for months.’
‘Shh! Mr Giles is walking past.’
‘Yes I see that. So what?’
‘It’s not respectful to talk when he’s doing his rounds.’ Apparently we were supposed to be good little girls and boys, however grown-up we were.
‘I see. We have to KEEP QUIET! when the director WALKS PAST!’ Intentionally I raised my voice, so that everyone winced. ‘So much for the home from home.’ As far as I was concerned this was a Cheshire Far From Home. A Cheshire un-Home.
What the establishment needed was to have all its moral windows opened, every cobwebbed corner swept with a dynamic broom. I volunteered. Since the prevailing mood was of cringing, I set myself to swagger. Let everyone else impersonate refugees if that’s what they wanted. I would behave as if I owned the place. Obviously I had advantages — I was just passing through, and I had more mobility than some. It seemed worthwhile to show them that abasement wasn’t a necessary condition of life.
I wasn’t trying to be popular. It was fine by me if I was hated by the other residents, just as long as I got the message across that we were worms by consent, and could just as easily choose to be pests.
The Director wasn’t actively a bully, but his régime inflamed those who were. One cleaner called Molly had the knack of looking as wholesome as a pear on a dish as long as there were other staff members around, but came nastily alive when she was on her own. She carried the shark gene, the one that delivers sure knowledge of what can be got away with.