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Living with personal assistants

Independent living has its challenges - and they're not always physical. Photograph: Getty Images/Imagewerks Japan

Independent living has its challenges - and they're not always physical. Photograph: Getty Images/Imagewerks Japan

Independent living has its challenges - and they're not always physical. Photograph: Getty Images/Imagewerks Japan

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.

From Telegraph.co.uk

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.

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

Tomorrow – anger management, meals and letting go

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