Yesterday, I read an observation from the ever thought provoking Neil Crowther which said that we should move away from talking about and thinking about the idea of “the cared for and the carer”. Neil argued that these terms are unhelpful and possibly cement the problems that the disability world tries to change.
I believe Neil has a point. Seeing someone as being ” cared for” sadly seems to play into the idea of not being quite human. Its the same with the elderly. Whenever a care home or dementia story emerges, there is usually “a different species” feel to how the person is presented. And carers are regularly patronized and presented as “heroes”, poor and weary. It all sustains a narrative that doesn’t seem to do much to change the status quo.
Let me digress. Several years ago, I did a course to become a couples counsellor. It didn’t last long. I tried to practice what I was learning and took on some real life couples but each time it was like entering a war zone. I do remember the tutor saying in the first lesson – ” There are three people in the client chair. Partner 1. Partner 2. And the relationship, the family”. It had a ring of Princess Diana’s famous quote but it stuck with me.
Because that’s what we’re talking about. People. Relationships. Families. Normal stuff. Any other label distances and sets up a “different from the rest of us” dynamic that is not useful.
One example of this is – Steven has a FACs assessment: I have a carers assessment. The two assessments have never joined. We are seen as two separate entities. Which of course we are but that overlooks the relationship between us, our family. And we are just two. What about those families with two parents and a couple of siblings. The “cared for” is identified. A “carer” is chosen. And the other people don’t come into the equation at all. The third (and fourth and fifth etc etc) are part of the relationship and need to come into the picture.
One (of probably many) nonsense of this status quo framing is respite. Family member 1 has a disability that needs constant support. Family member 2 asks for some respite help. What happens next? Family member 1 is taken away from their home for a day (or week, or month, or forever). How does that work? Family member 1 didn’t ask for respite but they are the person who has their life turned upside down. Perhaps NHS England should look at turning ATUs into places that the other people in the relationship can go to for their respite. Rebadge Assessment & Treatment into Respite Units. Mini Premier Inns. Might be useful. This may be a fanciful idea but it is all set up by the system’s refusal to see people as people. In connected relationships.
I don’t think I’ve ever used the word “Carer” when asked to describe my relationship with Steven. I’m his Dad. Isn’t that enough? When we sit down this afternoon for our regular Tuesday afternoon Gladiators viewing, am I caring for Steven? I see it as Son and Dad hanging out together. It happens because I care about him not that I’m caring for him. And I don’t think Steven ever thinks of himself as “the cared for”. He is Steven Neary. He understands relationships. He knows his support workers are ” at work” but calls them his friends. I know this won’t be popular but I cringe sometimes at the way that unpaid/family carers talk about the paid carers in their family’s life. They can be, at best, dismissive but at worst, move into downright hostility. Steven’s support workers are not part of our family but they are part of our family dynamic. so, I would argue that anyone who has a paid carer coming into their home has an additional element to their family “system”.
The language of relationships is really important. And I think Neil is right – the current language frames an image that has little bearing on most people’s reality. And gives little acknowledgement of the “players” in the relationship as being people. Regular human beings.