Adam Mars-Jones - Cedilla

Cheshire Far from Home

In the Easter vacation of 1973, with very mixed feelings, I went to the Cheshire Home in Gerrards Cross for a respite visit. The name was mildly appealing, since ‘Cheshire’ had been one of the candidates for my middle name, because of exactly the Leonard Cheshire, veteran of the Battle of Britain, who had founded the Homes. The first Cheshire Home was actually Leonard Cheshire’s home — he lived there. He wasn’t disabled himself but was concerned for friends who were, and wanted them to have all possible control over their lives. I had a little fantasy about becoming something of a pet in the Home he had set up.

Gerrards Cross was only a few miles from Bourne End. It was strange to drive so nearly home, and then to stay away. My only previous experience of respite had been the gloriously ramshackle all-male nursing home (‘næ wummen’) in Bognor, where I had gone after my knee operation. Clearly that establishment was an oddity, and more likely to be closed down double-quick than taken as a model anywhere else.

Leonard Cheshire had been a Group-Captain. He would expect a certain amount of order and decorum. He wouldn’t want half-empty cups of tea or coffee left uncollected, let alone half-full pee-bottles. I couldn’t hope for ribald raillery. But a breeze seemed to be blowing through so many stuffy institutions, even Cambridge University, and I didn’t anticipate the Cheshire Homes would have double-glazed every window against every faintest zephyr of permissiveness.

When I arrived, there was a sort of interview. It wasn’t called that, it was called an Informal Welcome, but I decided it was really an interview, and a proper interview at that. The ‘inter’ part of the word meaning mutuality. Back and forth. Exchange of views. I would expect to ask questions as well as to answer them.

Mr Giles the Director told me what a privilege it was to be responsible for my well-being, which is just the sort of thing that puts my back up. I don’t believe it, and don’t see how they could expect me to. I don’t regard it as a privilege to look after me, so why should he?

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.