18 November 2009

Independent living: A disabled man and his personal assistants

Stefano Goodman uses a wheelchair and lives independently - with the help of two personal assistants. Such uniquely intimate relationships with strangers take a bit of getting used to ...

My disability means that I need help for almost all physical activity. So, to enable me to live an independent life in my own home, I need a live-in personal assistant. Do not call them 'carers' under any circumstances. If you do, disabled people will start throwing their wheelchairs at you. Or, at least, they'll ask their PAs to do it on their behalf.

I have a couple of PAs working in three-day shifts and they usually stick around for a year. Training up and getting to know the new guys twice a year is stressful, but I have developed strategies to make these periods easier.

Living with strangers
We are in the kitchen. He asks me if I want some wine and I nod. He takes the glass, puts it between my lips and slowly starts tipping it down my throat. When I have had enough I carefully grip the glass in my teeth and gently push it down: the international sign language for 'Please don't drown me in Chilean merlot'. I can shove a computer mouse around well enough to win international design awards, but holding a wine glass is beyond my physical abilities.

I have found that the kitchen is a really good place to weigh up my new partner in this strange relationship. Strange because it resides in a grey area: too intimate to be strictly business (it's hard to think of the person helping you dry off after a bath as an employee), yet too enforced to really be friendship.

In return for bed and board and a small living allowance they have come from all over the world, for any number of reasons. I know from their passport photos what they look like, but on the first day they are strangers. Strangers who eat and sleep in my house; strangers who help me do some of the most private things possible.

Imagine getting a new lodger who, on their first night in your house, helps you undress and makes you comfortable in bed. Psychologically, that took a lot of getting used to, but now my concerns are more mundane.

The perils of shopping
I went to the supermarket with Raoul the other day, and we accidentally stole four tuna steaks and two fruit smoothies. After completely filling a basket, we used the compartment under my chair. We got to the checkout and unloaded - but we forgot the items stuffed away under me. Raoul was oblivious - when there is food within arm's reach you could take a hammer to him and he wouldn't notice - but I remembered just as he handed over the cash.

For a second, I thought I should mention it. Then, just as quickly, I reassessed the situation: sleepy edge-of-town branch; genuinely a complete accident so we hadn't acted suspiciously; very easy to play the disabled card (when they come for Raoul I could start drooling and gibbering - perhaps I should practise this for future use?). Anyway, no one noticed a thing until I mentioned it when we were in the car. He was wide-eyed for a minute, and then we both laughed.

Another day I asked Raoul if he could make a quick trip to the supermarket for toothpaste. On returning, his opening line was, "They didn't have your old one." I was immediately on alert. He continued, "But they had a special offer, buy two and get one free." With a showman's flourish, he showed me something made of ground chalk and minty wallfiller. In a family-sized tube. Well, what's the point of buying the wrong thing and then not buying it in the very largest size you can find? Instead of one tube of the toothpaste I have been using for half my life, I have three salamis of grout.

I wanted to turn into the drill instructor from Full Metal Jacket. I wanted to scream poetic, spittle-flecked invective inches from his pacific face. But it's only toothpaste and he's a good guy really. And I barely reach his midriff; asking someone to bend down so that I can insult him seems very laboured.

Anger management
Checking for 'work' emails. Illustration: Stefano Goodman
I remember the moment I knew I had a serious problem with my new PA, Zvonimir.

Near the end of his third shift he asked if I wanted a game of chess. I remembered him talking about chess before and, detecting that he was a fairly accomplished player, I had already mentally prepared myself for a nonchalant defeat. I convinced myself that I really should have been working anyway, and so any loss was going to be down to a lack of concentration.

We played and in no time he was beating me like a bad habit. Every now and again I made a show of checking for 'work' emails, emphasising the point that I was actually being polite in playing at all. I did mount one serious attack, but I knew I was doomed. At one point I made a desperate/stupid move and he stifled a deep sigh. Three moves later I resigned.

Breezily, I congratulated him and said that I really should get back to work. This didn't even register with him. He just stared at me. "Why did you do that?" he asked. I told him what my attack plan was. "I understand that," he said. "Yes, I understand that. But you knew you didn't have enough time to develop that attack." Disgust and anger laced his disappointment. He didn't blink during the whole exchange.

A few weeks later, Z left our working relationship. The agency that arranges for these placements does very thorough background and criminal history checking, but I am not sure where his anger management issues would show up on a normal application form. Z always treated me with respect and, despite his general intensity and occasional temper flare-ups, we got on OK, even if I had begun to be slightly wary of him.

There was no such (fragile) harmony back at the shared, off-shift volunteer house. Threatening behaviour to the housemates and staff at the local bank was a quick route out of the country.

Tea time
I await the first cup of tea from a new PA the way I await the first game of a new football season: anything could happen and the result will be a signpost for the season ahead, Gary.

More than two weeks in with Raoul, I still couldn't get through one of his afternoon cuppas. He noticed. "No better?" he asked. "Getting there …" I said, unconvincingly. It had taken a full week to successfully remind Raoul to let the kettle boil fully before using the water to make tea, and three or four days before that to convince him that water from the hot tap is not a substitute. "Really?" he had asked in genuine wonderment. "Really," I had said. "But it's so hot, almost too hot to touch!"

Sometimes I fantasise about buying every tealeaf and bag available, and ordering a scientific endeavour hitherto unknown to tea technology. Locking ourselves in the kitchen, we would try every possible combination of brewing time, temperature and method. Once we discovered the perfect process, I would get the PA to video it and post it on YouTube. From then on, it would be available to all the new PAs at the click of a mouse. One day, my friends, one day ...

The last supper
It's year-end for Gustav. He is a really easy-going guy and I will be sorry to see him go, even with his onion breath and addiction to pornography. Often it is very hard to say goodbye to someone who has been sharing my life for a year. Unless it has been a really difficult placement, I am genuinely sad as I see them leave for the last time. I have had intimate physical contact with them for a year, but I will probably never see again.

I offered Gustav his choice of our last meal together, as is my tradition. Secretly I hoped he would pick something that I usually forbid myself, thereby allowing me to gorge guilt-free. This gambit usually works very well, as almost every one of my PAs has had the appetite of a nursing sow. (I do not put Raoul in this bracket; his appetite is a mutant thing and belongs in a different league completely).

Unfortunately, Gustav was under pressure from his new girlfriend Ursula to become a vegetarian, and so he picked some macrobiotic stuff from a place run by people with hairy arms. I think I hid my disappointment very well, and I'm proud of the mental strength that prevented this incident souring my memory of a pretty good working relationship.

• Stefano Goodman is a pseudonym. All other names have been changed.

More information on independent living
Independent Living Alternatives

National Centre for Independent Living

Community Service Volunteers

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