Paraphrasing Princess Di

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.

6 thoughts on “Paraphrasing Princess Di”

  1. I feel that my needs should be part of his assessment and I don’t feel the need to have a separate assessment as I pointed out to the assessor if he has the right package that gives me time for my self that is just fine. It is better to get your needs included with the person you care for as it is all on 1 document, as you pointed out they cannot cross-reference the documents. Anyway the user’s FACE assessment has more legal power thus far as in Carer’s assessment there may be a need but no legal requirement to provide.

  2. This holds particularly true in the case of disabled parents. The language of Carer and Cared For frames me as a passive dependent of my young children, and them as miserable/heroic. The reality is I’m just as much their mum as an able bodied parent is, only I need help with certain tasks. And if only the State provided that help and support, my children wouldn’t miss out on opportunities that other children have.

  3. This seems to be the theme of almost all my supervisions at work. I see my ‘service users’ god, I hate that term, the people I visit, as people first, with all the same rights and responsibilities as everyone else, who, because their way of seeing and negotiating their way in the world, constantly run into issues and difficulties. That’s where I come in, try to help them find a different or alternative way that causes them fewer issues and difficulties but feels ok for them.
    Sadly for too many in this industry, the ‘service user’ doesn’t have a problem to be solved, they ARE the problem to be solved. It’s frustrating but I have now reached the point where I just turn up to supervision, let the supervisor do the talking, sign off the scribbled note and go about my work with the lovely people I visit.

  4. This is also a problem if you have more than one child with a disability so you have therapy programmes for each child, but nobody tells you what to do with the other one while you are carrying it out. Also, how to leave the house with two children who need 1:1 support, when the other parent is working… No professional has ever offered me a suggestion.

  5. So you, Neil Crowther and the likes of Simon Stevens think the term “carer” isn’t justified or needed and I right?

    So remove that title and what happens? Many “carers” would then be expected to go onto Job Seekers Allowance, this means one of two things for *full time carers-

    1 – your caring role continues and you won’t be able to fulfil the regulations/stipulations for claiming-sanction

    2 – Your caring role continues but you drop out of the benefit system

    (*full time meaning 35 hours or more care provision a week and being unable to work because your caring role takes up all of your waking hours)

    Much as Carers Allowance is pathetically low it does mean being exempt from having to fulfil JSA regs at present.

    Rather than getting rid of the only word that describes us or defines what we do we (carers) should be hitting out at a coalition that makes our lives harder.

    Yeah I’m my wife’s husband but I’m also her carer, a damn hardworking and proud to be called one at that. The word/term “carer” distances no one from anyone.

    As for “respite”? Only had one break in 20 years of being a carer, impossible to access apart from that one time because no funding was available, but had it been then any respite would have been discussed and agreed to by both of us.

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