It’s funny. I expect that many, many people think that having people coming in to do things for you every day must be really nice. Some may even be willing to pay quite a lot of money for the privilege. But, for a disabled person who has to rely on carers for everything it’s not always that good. I hate it.
I don’t want to sound ungrateful but having carers, personal assistants or PAs as I prefer to call them, is not the barrel of laughs you might think it is. Sometimes you just want them to all go away and leave you alone.
I don’t know about other disabled people but I seem to spend three quarters of my life explaining the same thing to the same person over and over again.
You want a cup of coffee? Even though your PA has made you coffee every morning for a year they still bring the mug to you and ask if they have put right amount of granules in. They still ask if you want sugar. They still ask if you need milk. Every time they make you a coffee, they ask. Stop asking! Just make the coffee the same way you made it yesterday, the same way you made it last week, the same way you make it every day, it’ll be fine.
And so it goes on. At lunch time they come and tell you there is nothing in the fridge for you to eat when you know there is. Why can’t they try moving the milk or the eggs or whatever is at the front of the shelf and looking properly. The cornish pasty you want is probably at the back or on the second shelf and not the top one. Have they never heard of using their initiative and actually looking? They don’t have to ask about every single thing they do, all the time do they? Perhaps they do, I just don’t know.
Then there is the massive indignity of the whole thing. People coming in every day to wash you and clean your teeth and dress you. Strangers walking into your room every day and waking you up by stripping the bedcloths off you with hardly a word. Having to lie naked in bed every day letting someone you are not having a relationship with touch you in places that you would prefer not to be touched. I hate it.
And there are other things to consider as well. If you have your PAs supplied through Social Services or an agency you have no idea who is coming into your house on a daily basis. Someone you have never seen before puts the key in the lock and just walks in. They could be anyone. How are you supposed to know? So, they know the code to the key safe outside the front door but how? Someone else could have told them. They could be here to rob you or murder you or vandalise your home. You just don’t know.
And there is even more. If you are someone who has what is known as double handed care, in other words, two PAs per shift, there are even more things to put up with, especially if, like me, your PAs have English as a second language. What are you supposed to think when they start talking to each other in their own language over the top of you whilst they are washing you. What are you supposed to think when they both laugh at something and you have no idea what it is. Are they explaining something difficult about the task in hand to each other or are they talking about you? And the phone calls. They all seem to have mobile phones that go off all the time which they answer and chatter on in a foreign language in front of you. What are you supposed to think then? Are they talking about you? You just don’t know.
For non-disabled people who have never experienced it, having a PA seems like a good idea in theory but in practice it’s not alway as much fun as it sounds. I see PA support as a necessary evil. I recognise that I need my PAs in order to live but I wish, just sometimes, that they would leave me alone and go away. Privacy and autonomy matters and are a precious things but they are both things a disabled person loses as soon as they have to start having to use a PA.
What I would really like, just as a special treat, is a day to myself where I can have a lie-in if I want, eat what I want and do what I want without having to have to explain anything to anyone. Will it ever happen? I hope so, I just don’t know.