Last week was half term in these parts and as I was walking home from town one of the days I noticed a piece of plastic on the pavement and a small gaggle of children in the centre opposite gathered around the gate looking at it. I walked over and asked if they wanted it back and as I bent down to pick it up two of the children got into a conversation with me. The first looked slightly panicked and said ‘ he threw it out there’ and then another almost immediately piled in with ‘actually, it was an accident’. The plastic was passed back through the gates and I suggested they might try avoiding any more accidents by perhaps not throwing things quite so high.
Since then I’ve chuckled to myself on a number of occasions and ‘actually‘ with the outraged intonation of a small child caught red handed and in complete denial, has entered my vocab. ‘Actually, it was an accident that I ate that bag of crisps at lunchtime’, ‘actually, I didn’t mean to sleep in’, ‘actually, the beer was on special offer and made me buy it’, that sort of thing. I’ll come back to this in a mo.
Last week I got into conversation with someone who works at Southern Health on twitter on the JusticeforLB account. This person was a ‘patient experience champion’ for people with learning disabilities. When I asked them why patients needed a champion they told me that:
I work with some adults who have severe LD, so unfortunately struggle, or can’t communicate for themselves
When I challenged this view, pointing out I’d never met anyone who couldn’t communicate with support, the response was as follows:
You have issues against the NHS, I can see that. But the work my colleagues do, where I work is excellent.
Wow, where to go with that. The language is fascinating, I don’t have ‘issues’ with the NHS. The JusticeforLB campaign has consistently sought accountability for a death that a jury found as the result of neglect, by the organisation this person works for. When I tried to point that out they blocked us, simple as that, fingers in ears, move on.
Why am I blogging about this? It’s over 15 years since I completed my PhD. It looked at education and curriculum for children and young people with profound and multiple learning disabilities in schools in England, Wales and Ireland. At the time I started my PhD education had only just been extended to profoundly disabled kids in Ireland, as a result of the Sinnott case (2001). I remember being really shocked at some of what I saw when I started my fieldwork in Ireland. Well intentioned, caring people (often nuns) who believed that these children were Bronntanas ó Dhia (gifts from God) and treated them like overgrown babies, until they got too big to cuddle and then they were often left sat in wheelchairs for hours, staring at a wall or a mobile or out a window. I met many people who told me that these children couldn’t learn, couldn’t communicate, just needed love and mercy and so on.
As I tried to discuss with the Southern Health staff member, I’ve never met anyone who couldn’t communicate.
It may take us (a long) time to learn how someone communicates, it may require the help of technology, it may be as subtle as an eye blink or movement, it may challenge us to consider whether some of what we consider is ‘challenging behaviour’ is actually a crystal clear attempt to communicate something, but I’ve never yet met anyone who couldn’t communicate. Jenny Morris wrote a brilliant blog post on this for #107days Communication and being human.
Yet somehow we are now in 2016, 15 years later and trained staff working in the NHS think some people can’t communicate. More to the point they are so intent on not debating this issue that they stick their fingers in their ears and pretend they can’t hear dissenting voices (blocking people out who challenge their viewpoint) and these people are convinced that they know what’s best for learning disabled people.
Then yesterday there was yet another report published stating how dire things are. Stephen Bubb has taken 18 months to decide what people were telling him right at the start. The language in this BBC interview is interesting, it starts off well:
‘ As a society we don’t value the lives, let alone the deaths, of people with learning disabilities’
You won’t find me arguing with that, in fact it’s pretty much what JusticeforLB has been saying for two years now, and many other disability rights campaigners have been saying for decades, long before Bubb was appointed. The solution according to Stephen Bubb, we need a commissioner for people with learning disabilities:
‘to speak up, to campaign, to advocate on behalf of those people and their families…. there are actually up to 1 million people with learning disabilities, some severe, some not so severe, it’s actually quite a large number….’
Sir Stephen’s solution is a commissioner to protect people with learning disabilities. As Mark Neary pointed out, they have fat chance of that if Jeremy Hunt, who is actually the Health Secretary, can’t intervene when the Mazars review reveals hundreds of un-investigated deaths at Southern Health. His use of actually confuses me, is he surprised about the number of people with learning disabilities, or is he trying to cover up for something?
Last summer, My Life My Choice produced this film about Connor Sparrowhawk’s life and the #JusticeforLB campaign, if you’ve not seen it it’s worth a brew and a watch.
Just listening to learning disabled people could have saved Bubb eighteen months, countless meetings and croissants and pointless words. Everyone can communicate, if people want to hear what they’ve got to say that is. Actually, it’s not rocket science.