A prisoner of the day room

Beatrix Campbell's mother escaped a jail term to find herself sentenced to life in a geriatric ward
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The Independent Online
My mother is a criminal. She is the only person in our family to have been locked up. When she walks down the street, people recognise her and tell her she's wonderful. Her notoriety as a peacenik is one of the rewards of her retirement. It is a y ear since her last criminal damage, when she snipped the ropes rapping the Sellafield Visitors' Centre flagpoles and, whoosh, the flags flew away.

For a year she was in and out of court - her regular rendezvous with the nuclear power plant's staff and the police. She was fined, refused to pay, appealed. She, not Sellafield, was preserving public peace and safety, she said. She seemed destined for jail again until, exasperated, the magistrate invoked little-known powers to let her go. Her assiduous activism is what she lives for, one of the luxuries of her great age - she is 77.

Much to her surprise, far from being severed from the social world, retirement gave her the luxury of control over her own time. Her great loss, however, has been control over her own body. The joke is that she is bionic - she's got a space age pacemakerattached to her heart. Her autonomy, therefore, is contingent.

A few weeks ago, she felt her body abandoning her. She was having a stroke. My mother describes it as "being thunderstruck". After she recovered consciousness, she could talk and she could think. She was serene and witty. She was glad to be alive. But she was very ill and couldn't move. Her home became a bland laboratory populated by busy professionals and terrified relatives.

We were - and still are - having a classic encounter between the public and the National Health Service: episodic and desperate. That is why patient-politics rarely enthuses the great debates about the NHS. These are not the conditions of a political liaison. Purchasing and providing impinged instantly. Initially she was not allowed, for budgetary reasons, to go to the hospital of her choice, which holds 16 years of her heart records.

Her days in intensive care in an acute ward exemplified what the service did well, but when she moved on to the long, slow process of recovery, then the pointless patient's charter didn't help her, or us, challenge the careless ethic of the asylum.

What was to be done about those days when the alarm button was beyond her reach, so she couldn't alert distracted staff that she needed to go to the toilet? This fastidious women sat in soiled clothes, infantilised. Strangers, her children, her friends now hold her body, pull down her knickers, wipe her bottom.

She submits to this unprecedented dependence with what seems like serenity. Her face shuts in concentration and exhaustion as she tries to stand, find her balance, put one foot in front of another. The effort is extraordinary. She is, after all, fightingfor life.

But a help button beyond reach only needs to happen once to remind the patient of her powerlessness. "Never mind pet ... all right flower." Affectionately said. "Little do they know that you're a venus flytrap," says a friend. But there's no discussion or decision about what she wants to be called, never mind who she is, in this community of strangers. Some days her hearing aids aren't in. Not because she doesn't care to listen but because she can't put them in place.

There have been glorious occasions when she has used her hearing aids strategically. A few years back when pensioners blocked the traffic outside the House of Commons, she twiddled with the volume, turned it off and asked the nice police officer who had told her to move on: "Sorry Mister, what did you say?"

But now being hard of hearing is a defeat. The hospital didn't notice. It made itself unintelligible and made her mute. This signifies something more nuanced than carelessness, it shows that it doesn't want a rapport with her, it wants to manage her, to own her ambitions, her movements, her relationships.

What the institution saw was an old woman. What it didn't see was a strategic soul struggling with a catastrophe. It interpreted her quest for privacy, a room of her own, as a melancholy flight from life. It saw a geriatric rather than a gregarious activist with a crowded agenda and a thousand friends, who has become an expert on her own survival.

"But she won't go into the day room with the other patients," they lamented when we expressed concern at the minimum maintenance of dignity, her hearing, her hair, her toilet. But the day room would face her with their needs - patients all together in front of soporific television, keeping each other company while they were fed, watered and toileted.

My mother dreads the day room. It looks like a place of dying. She should know, she nursed the elderly for 20 years. She loved them but she didn't want to join them, and since her retirement she has refused to become elderly. Anyway, the day room would only confront her with work: the work of making herself understood in a country that has for 50 years mocked the sounds she makes.

Unlike most Brits she is bilingual, and English is not her first language - she is an immigrant. This woman is not above deploying her age, her gender, her hearing and her creative linguistics to confuse the enemies of the people. But now all of these have been subtly mobilised against her own self-determination. The image of herself she sees refracted is of imbecility.

The institution doesn't tell her what time of day it is, it doesn't bring the news. Her everyday environment, where she will spend more time than any holiday, than any sojourn with her children, has become a cubicle with a number, not her name - not the swell bathroom and bedroom she designed herself, where she could bathe daily and admire her cherished curtains.

As the days go by, her humanity - who she is, signified by how she does her hair, her criminal record, her hearing aids, her clothes, her reading habits, the discos, the dinners and the meetings that she's missing - disappears. Some individuals are mean to her, others are good-hearted, some are ingenuous, others disconnected. The problem does not belong to them.

Neither is her fate reducible to resources (the left's rhetoric) or management (the right's). The problem is that the system does not engage with her humanity - or ours - in support of her health. Why should she spend her days recovering in somewhere shoddier than home or the hospital foyer? Why should her life as a patient have the pattern of a prisoner's?