I have two regular agency carers who help me out at home, each doing different days of the week. One of them has just started a university course in Health and Social Care and so can’t always come, and the other isn’t very well at the moment. This means I’ve been having visits from carers I don’t know, and whenever I meet a new carer or support worker I explain a bit about myself and about Tourettes. And I describe what help I need.
Last week when I was feeling under the weather a new carer came to help me. She was friendly and cheerful but it became clear that she’d very quickly made certain assumptions about me. When I said that I needed some help taking my laundry through to be washed she said ‘I’m going to challenge you to do more things for yourself.’
This took me by surprise and I said ‘I actually do quite a lot for myself and I work full time’ Her response showed she either hadn’t listened to me or hadn’t believed me because she went on to say how important it was for me to do as many of the little things I could for myself as possible.
She was only with me for half an hour and I wasn’t feeling strong enough for a big debate. However, if we meet again I’ll certainly make things much clearer for her.
Judgements like this aren’t uncommon, even amongst carers. I’ve had some carers laugh at me when I’ve said I’m getting ready for work, or doctors say ‘I assume you don’t have a job’.
But this carer’s comment from last week has stayed with me because she went beyond the usual assumptions about my employability and presumed to know what was best for me before she’d even got to know me.
Like anyone else, I do need to be questioned sometimes about why I’m choosing to do or not do something, but judgements like this need to be based on knowledge, not blanket assumptions.
I talked about this with my regular carer this afternoon. We had a really interesting conversation, especially as she’d been thinking about similar issues as part of her university course. She laughed with disbelief when I explained what the other carer had said and went on to say that she’d talked broadly about me in her class the other day as an example of how the right support could help someone do a lot.
When I first started needing carers it took me a long time to realise that being independent didn’t simply mean doing everything for myself. For me, making my own decisions is the mark of independence, not whether or not I’m able to carry out a specific task myself. I have a lot more choice and freedom now that I’ve learnt to ask for and accept assistance.
It’s really important that people providing care realise this too. Knowing when to do what the person you’re caring for has asked you to do, and when to encourage them to do it for themselves, is a critical and powerful skill. But the crucial thing is to get to know the person first before making any judgements.