At its worst: Standards; [slipped-through, unmonitored, uncorrected] Retarded, incompetent, intentionally crap & intimidating to dissuade use. & Agency Pressure to avoid any service variation.

Chapter Thirteen 

Care in the community


Being paralyzed is like being in an open prison. Your freedom is removed, you are trapped, locked in by your inability to move and your sentence is a life stretch - if you believe the screws. 

Here I was on that first Monday morning lying in bed, disorientated and nervous, watching my brother getting ready to go to work. I wondered who my first care worker would be. She would spend the next twenty-four hours with me but her immediate task was to relieve my brother, get me dressed and up into my chair. Because she would be a stranger she would have no particular knowledge of me and I just hoped that she would be capable and experienced - because I wasn’t. She and her army of colleagues are supposed to make it possible for me to live in my new flat. From this point on, someone would be with me all day and all night to help me if and when I needed it. It felt like a strange and unnatural way to have to live. I wondered if she would be a student nurse or a semi-retired nurse? 

She was due to arrive at 9.30 and at 9.25 there was a knock at the door. Craig walked in. ‘Geezer, a new flat in Islington, overlooking the canal, a different girlfriend every 24 hours, at your beck and call, fiddling with your bit and bobs on command.’ A free replacement car every three years, no bills and your pockets stuffed with disability wedge as you blast up to the high street in your new, top-of-the-range, electric wheelchair. I’m gonna be very comfortable here.’ 

By 9.45 there was still no sign of my Florence Nightingale. My apparent neglect was not missed by Craig and he suddenly switched from light-hearted, dismissive mode to outraged moral humanitarian. He rang the care agency. 

An hour later there was a knock at the front door. That may not sound alarm bells in your head, but in mine . . . I was supposed to be alone in bed, incapable of getting up to open the door. Craig answered the door then walked back into the living room wearing a disappointed and grim expression. Behind him, the reason. A tall, hefty, pile of walking, unwashed, wrinkled laundry covering an unwashed and smelly body trudged wearily in to my new home. She was about twenty-five and had what looked like midnight shadow on her chin but judging by the rest of her it was probably just dirt. And, the crowning glory, the mark of distinction, the flashing amber light was her black, straggly and clearly filthy, dank, oil-laden head of hair. 

We nicknamed her Greaseboat. Craig’s hope of stealing the beautiful, feminine, caring young ladies that he thought would be surrounding me daily was dashed against the hull of a great big rusty barge. And, like the survivors of a sinking ship Craig abandoned me to save himself. 

Greaseboat was a disappointment not just for Craig, she proved to be an incompetent worker, scatty, dithering and devoid of any common sense. She was a socialist, a vegetarian and a lesbian. All choices and traits I accept and respect but unfortunately she did not do the same for me. To Greaseboat I was a heterosexual, carnivorous, capitalist, misogynist male and an affront to all her sensibilities. Apparently all men are potential rapists even children that are male because they grow up to be men, DON’T THEY!!. Oh yes, I was everything she hated about the world she lived in and I was paralyzed and at her mercy. Greaseboat dropped me on the floor three times and to this day I am unsure as to whether this was because of her incompetence or her politics.  

Greaseboat was the worst possible start for me. It took me a while to wake up to the fact that although the systems are in place, society has no chance of fulfilling the ideal of care in the community. It appeared to me that no distinct department or person took nor accepted responsibility for the standard of service being provided for me. I perceived no more than a fleeting interest and a clear unwillingness to scratch the surface and risk exposing all sorts of unwanted work. It took a while but I learned that I was going to have to look out for myself. No matter how much of a social conscience existed in my community the people holding the reins to my welfare seemed to be just loafing wasters hoping to get lost in the bureaucratic machinery of a sluggish and inefficient gravy train. 

The unemployed school teacher was a member of the communist party. Even so we found very little common ground and neither a friendship nor a civil working relationship grew. Four lesbians later I met one that had not been abused by men and did not automatically hate me. Kim liked men she just did not want to have sex with them. She told me about the care manager at Kings Cross Care - Winn  - another lesbian. Not just an equal opportunities employer but a very aggressive equal opportunities employer. Winn, it appeared, had been drawn to her job by the pure enjoyment she derived from being in control of other peoples lives. In her privileged position she was privy to all our gossip. Her network of devoted spies, reported back to her during their monthly one to one private supervision meetings. Winn knew about the highs and lows of all her liebling and armed with this knowledge she would plan how to influence those lives for her own greater good - which rarely amounted to more than her own selfish pleasure. When the motive for spying, manipulating and harming is pleasure, it is far more sinister than, theft or a specific hatred. If your hobby was cruelty, what field would you work in? 

The care worker or pa or empowerer is the extension of my arms and legs. They are supposed to do what I can not enabling me to live a full and independent life in the community, along with everyone else. Unbelievably, not only do some agency staff have inadequate language skills, they also do not listen to the instructions. They assumed what they should do next based on their very illogical deductions. 

For example; `Could you go behind me please,’ resulted in one worker promptly turning around and leaving the room. ‘Where are you going now?’ I asked.

They returned. ‘I don’t know, what you say,’ she responded. ‘What did you think I said?’ I asked with genuine curiosity. ‘I don’t know.’ ‘Why did you leave the room?’

‘I don’t know.’ I stared at her in utter disbelief and she stared back at me in utter confusion. We continued. 

‘Could you just grab my ankles and place my legs on the floor, next to my wheelchair which is now next to the bed, please.’ - ‘No, that’s my wrist. Let go . . . no, no don’t PULL, LET GO!!’ - `My ankles are down there . . . down . . . DOWN.’  Turning up the volume seemed to work most of the time - it was not just a language problem but an attention problem as well. 

Language was not the only problem. While directing the cooking process of an evening meal, I showed the worker where the tin opener was and asked her to use it to open a tin from a nearby cupboard. I tried to explain to her how to use the tin opener but it was hopeless particularly as she would not listen to me. She kept repeating,

`I can’t do it.’ I was on the verge of dying from the frustration when she said `I go next door and ask neighbour.’ What a brilliant idea, the woman’s a genius. Total defeat was never an option to me. When she came back I asked her, `What made you think of the neighbour?’ `I do it all the time,’ she said proudly. 

My next door neighbour also opened a bottle of wine for me a bit later and I got stewed while I reflected upon my state of independence. If doing basic things around the flat was a problem I was not about to risk my safety by going out and dicing with street curbs and dog shit. I stayed home and simplified my life by keeping my TV, stereo and video remote controls within finger pressing distance. 

It is a fact that some care workers seemed to go through their day in a semi-conscious state. I consider it a miracle they had managed to get through their lives thus far without any major catastrophes. All I had to do was look in the mirror and the irony was horribly embarrassing. I cogitated, I ruminated, but, most of all I reflected. 

I hated being viewed as a useless person. Strangers would come into my home with a tedious expression of  `I’ve got to go to bloody work for 24 hours’. Disdainfully, they would look at me and question or comment, ‘Where you born like that?’ or ‘It was god’s will, you should have faith.’ I could go on . . . 

I was learning. I decided to put up lots of photographs of me before my accident. Eight by tens, all over the place. One of me standing on a cliff edge with San Francisco’s Golden Gate Bridge behind me. Another as I was about to exit a plane wearing a parachute. Climbing up a boat ladder wearing my scuba gear. Holding my instructor certificate next to my comrades with the blue sky of Key West behind us. And two in my karate ghee, grimacing while executing a couple of techniques.

After looking around the flat I was regularly asked `Is that your brother?’ 

But none of that matched my favourite question: ‘Your house is very clean, who cleans it?’ ‘I have 24 hour domestic help,’ I would say laying breadcrumbs in the direction of dropped pennies. 

One worker did not want to sit on my sofas. She stood in the kitchen wearing a fur lined jacket with a hood and stared at me as though she was worried I was going to attack her or turn down the heating. ‘Why don’t you go to your room, I’ll call you if I need you.’ No response. I pointed and commanded. ‘GO and sit on your bed. I’ll call you WHEN I need you.’ 

At 6 am the following morning there was a loud bang on the front door and a man started shouting. I couldn’t understand what he was saying but I thought I heard the word taxi. ‘NO TAXI HERE,’ I shouted. ‘WRONG DOOR.’ ‘SHUT UP, I wanna talk to my WIFE,’ the dude shouted back at me. She shuffled to the door and stood arguing in an unfamiliar dialect for fifteen minutes. She closed the door and went back to bed. I could not get back to sleep and I lay there fuming. After I was strategically sitting in my chair I complained about the incident and told her it was completely unacceptable and totally unprofessional. She could not understand what I was moaning about. For the rest of the day she stewed my tea. When she left I intended to relay the events of the shift to Winn in the hope that I would not see her again but I neglected to do so. 

Two days later Winn phoned to tell me that the Eskimo had complained that I was a racist. I assured Winn that all I could remember about her race was that the fur coat looked Canadian and that the woman in it was very odd. She did not believe me and for the next eight or nine days I was sent only black workers to test the Eskimo’s accusation. 

A few days into my tour of the former colonies I met Sonja, a black women from St Vincent. She was in her early forties, married with four children, the youngest of whom was seventeen. Sonja looked and acted like an energetic twenty-five-year old. Winn’s plan had failed. Sonja and myself quickly became good friends and before I could say `sink the Greaseboat’ we developed a quick and effective working relationship. For the first time since leaving the hospital I felt safer, calmer and increasingly relaxed. With both Sonja and Kim covering four days a week life was half predictable and I looked forward to their shifts. I felt confident enough to start inviting friends over to catch up on all the lost months in hospital. Even dinner parties seemed within reach.

Winn began to realize that I was less of a problem for her if she sent me suitable workers. If we liked each other they could then be scheduled on a weekly basis and I would then be out of her hair. She had lost a certain amount of interest in me as I continued to ignore her bullying ways and I stopped reacting to her regular shenanigans. Winn was surprised and highly irritated that I had started to form solid relationships with a few of the workers whom she thought I would hate. Even more bewildering to her was that these workers liked me and were showing nasty signs of loyalty. Circumstance caused her to start employing a different breed of care assistant, women with whom she had nothing in common with and whom she mistakenly thought would still think that all men were bastards and therefore she would always have that in common with them.