When the relationship between a disabled person and their assistant works well, it can be fantastic. When it doesn’t, it can be disastrous, says Rupy Kaur.
I first became an employer at 15 during my GCSEs – an additional stress most young people don’t have to think about. I needed to take on a personal assistant (PA) to help me with daily care tasks like dressing, going to the toilet, preparing meals, and also doing admin. I have cerebral palsy, a neurological condition that affects my movement.
Under a new widely welcomed scheme that started in 2001, the council gave me money to recruit my own assistants – they weren’t allocated to me by the local council. Although these direct payments gave me the choice and power to hire and fire, at that age I had no idea how to recruit a good PA.
I didn’t know what to ask them at interview stage, how to write a contract or legally protect myself, let alone how to pay them. But I now had that responsibility.
The council helped me find a few contenders but, due to my lack of experience, the only question I really wanted an answer to at the interview was whether they would feel comfortable wiping my bum. When they answered yes, I thought it was enough evidence to show me they were suitable for the job.
During my time as an employer, I have worked with many PAs – on average 10 a year. There have been some ups and downs. A few PAs caused me problems. They were often late, ignored my needs, talked about how drunk they’d been over the weekend and about intimate details from their personal lives.
As it was the only way that my personal care needs could be met, I went along with it. They were the people I was relying on when I was at my most vulnerable. They were my hands and legs, and it felt like they were the ones who were in charge. I certainly did not feel like an employer.
Incidents included writing their own cheques for payment and exaggerating the hours they had worked. Cheques would also be signed on my behalf. I felt I had no support to manage the situation and was relieved when they left of their own accord.
I’ve had PAs who have stolen from me, played games on their phones when they should have been writing my lecture notes, let me down at the last minute… the list goes on.
Two insisted on working in a pair, which meant my budget was eaten up more quickly than it should have been, so I didn’t have enough funding to cover extra shifts.
But I look back now and realise that these negative experiences have made me more resilient and a better employer.
I now have an accountant that manages payroll, have sound legal contracts, and I am ruthless when I am hiring. I have compiled a 15-page handbook for my new employees to read – not because I’m fussy, but because I have complex needs that would take months to explain. It’s just easier this way.
I have managed to recruit PAs over the years who match my personality, understand my needs and who have become friends while still understanding the boundaries.
For me, a PA is what it says on the tin. I need assistance in order to live my life the way that I want to. I don’t need a carer as I don’t need caring for. I am an autonomous person with the capacity to make my own decisions, and I need somebody who is able to assist me to achieve my goals.
Wanted: A Very Personal Assistant is part of the BBC Three Defying The Label season about disabled people. Catch up on the iPlayer attp://www.bbc.co.uk/programmes/b063j9hx