Care and support…..?

I saw a few posts on social media this week about people who ignore their children in order to check their phones and messages…..you know the sort of thing, a picture of a fed up child and a parent staring at a screen. In my study (I am on the fourth floor and commonly known as the Mad Woman In The Attic, not without some justification) I watch parents taking their children to school and some parents even have earphones in – blocking out not only the wonderful sounds of the morning, birdsong and breezes, but also their children, who stump along next to them glumly, often trotting to keep up as the uncomprehending parent  marches ahead in order to get that task out of the way and get on to other important things such as staring at a screen and drinking coffee. It makes me feel sad…..

It also makes me angry that we are still at this point in our evolution. For the past thirty-plus years I have been attempting to inject humanity into health and social services on different levels, since the horror of student nursing (about a hundred and fifty years ago….)  when, on my first mental health ward for elders (the clue was in the shorthand title: PsychoGerries) I trotted along for my first day to discover a shabby-coated and smoking staff nurse standing – slouching – in the centre of a semi circle of commodes on each of which there was a naked elder. Both men and women were lined up together for ritual and casual humiliation. After a brief pause to get my breath as I stared at him I sent him home (well, there were a few well chosen and short words as well) and along with some chums set about restoring a little dignity. At every stage, for years, I have seen that same ritual and casual disrespect and humiliation handed out to all and any people using services by people who, if you met them elsewhere would probably seem like decent human beings. From elders having crap food shovelled into their mouths by smoking and grubby “carers” to people with learning disabilities ignored and belittled for being who they are, not even allowed to choose their own bedtime, their own food, the people with whom they will spend their days – their lives.

Don’t get me wrong: there are some brilliant support people, some fabulous organisations who strive to be good, to deliver humanity in their services and campaign for change. I know, and have worked with, many fab people who actually care and understand what that means (ie that it isn’t just about smiling a lot and nodding, but it is about taking risks, liking and respecting the people around you and understanding that each of us is individual – and encouraging that). But in the grand scheme of things these people are too few, and the others are tolerated because of where we are in our evolution. Which takes me back to where I started.

Being with people – supporting people, caring, whatever word you use, and the words matter because you will behave in a way that the words expect – IS the point. The things we do, taking children to school, supporting someone to eat, going to a gig with someone, supporting someone to put their clothes on, shopping with someone, they are all component parts, each as important as the other, as important in how we do them as well as that we do them at all. Those grubby “carers” shovelling food into someones mouth are indeed performing the task in their job description but their main task – of being with someone and having that relationship with someones humanity, their person-ness – has been lost. How much more time and effort would it cost to look at the person in front of them and see their person-ness and be kind? But that kindness is by and large not factored into how we commission, deliver, train for, reward and recruit to support services. Our task oriented focus takes us from task to task, KPI to KPI, box to box and target to target. When was the last time you saw the word “kind” in a job description……?

I remember – and I wish I could forget – watching a “carer” stand up, walk over to an elderly woman with dementia, and without a word roughly haul her up and out of her chair because it was “toileting time”. I sent a nurse home one night years ago because as we were nursing a comatose dying woman in her bed the other nurse leant over her – right over her – and said quite audibly to me “I don’t know why we are doing this she will be dead by the morning.” Casual cruelty, thoughtless indignity, the view of people as lumps of meat to whom we have to do things in order to earn a pay packet. Hauling ourselves and the people we support from task to task as quickly as possible…..for what? That task is a means to an end, a conduit through which we can nourish and nurture the relationship – it is the means, not the end.

It is that corporate and individual refusal to see people as human, as individuals, that allows learning disabled people to die in hospitals they should never have been in far away from the people who love them and allows the people who allow it to happen to bear no meaningful consequences.  It allows elders to be warehoused in buildings from which they will never leave until they die, who will never again feel the breeze on their faces, hear the birdsong or the sea, have someone look them in the face and hear what they are saying, be useful, be heard. Be a person. Have fun. If we are not having a little fun along the way what is the point?

Please take some time to look at the links here. Stay Up Late is a brilliant grassroots charity promoting the right for people with learning disabilities to have a choice about how they live their lives. That it is needed at all is telling.

The more difficult read is the piece about assessment and treatment centres. Read it and weep. And then sign up to the 7 days of action. Please

And please read about Connor Sparrowhawk and his phenomenal circle of support. Even after his avoidable death the people responsible have had little or no consequences, even after compounding the pain by denying wrongdoing, doing a bang up job of saving their own skins, and reducing the humanity of everyone involved. Shameful. Painful. And his Mother has responded with dignity and energy – I listened to her on the radio a few months ago while I was driving and I had to pull over and stop because I was weeping too much to continue driving.

http://stayuplate.org/

https://theatuscandal.wordpress.com/2016/04/20/natural-causes/

https://www.opendemocracy.net/uk/shinealight/clare-sambrook/on-connor-sparrowhawk-s-avoidable-death

The “care” industry is regulated more now than it has ever been – there are audits, documents, inspections, investigations, inspectors, investigators, commissions, boxes to tick, all manner of things supposed to keep us safe. And yet the abuse is still there, as open and filthy as ever. Safety is not guaranteed – and anyway, is safety the most important thing in life? Isn’t fun –  and autonomy, and independence, and risk, and loving and laughing, making mistakes, and pain and heartbreak  – as important? Aren’t those things the things that make us human? Those safeguards will never take the place of kindness and humanity, of seeing the person in front of us and respecting them just for being themselves. Let’s try that – and owning it when we get it wrong – for a while and see what happens………