Who’s valuing who? the power of what you say

A personal blog

I posted on FaceBook group LearningDisabilityNurse.com a few years ago about how we should change abbreviating 'learning disabilities' to LD, not even PWLD. It didn't go down really well and some people don't really think politeness should be used when you have a computer in front of you instead of a person. I was still recovering from having a stroke and I didn't have the words in my then vocabulary to argue this point.

Then about three weeks ago I started to write bullet points down on this blog, which was inspired by Sam Sly, who is posting me 'I am challenging behaviour' badge. I answered a post of Sam's of why do we use the term 'placement'? I started to ask the staff at work if we can say 'home' or 'we will help you look for a new home'. But I was fighting against decades of culture. But I continued to start using the word 'home' instead of placement. 

I go out with a man, who has autism to places like Bluewater and the cinema. He asked me how a person he used to know was getting on and have they found him a placement yet? I said 'he is looking for a new home' and he continued to say 'placement'. I think we have dehumanised this young man and the person he was asking about.   

When I was an editor for a journal, the first rule I made was that authors had to write out 'learning disabilities' in full and don't use 'LD'. Authors still wrote 'LD' and I spent hours correcting this. My argument was how can we say we are valuing people with learning disabilities when the first thing we do is abbreviate to 'LD'. This was pure laziness by the authors. We use term mental health frequently but you don't see 'MH'. We used the term clinical psychologist and consultant psychiatrist, but you never see these terms replaced with abbreviations. I wonder who has the power? Anyway as soon I left the role of editor 'LD' was then used instead of the full term of people with learning disabilities, the main and only reason we get to write papers in this journal. But I'm not picking on this particular journal because is common practice in many journals to use 'LD or ID'.

I recently read an article and it was really quite good. It was about the impact of 'Transforming Care' and the use of language. They were quite rightly arguing the point of using words that people in general use. They also said that we shouldn't use abbreviations. Firstly 'Transforming Care' was a buzz word when I worked at the Institute of Psychiatry and the Maudsley back in 2010 and was widely used by the Department of Health. Did NHS England consult with people with learning disabilities about they wanted the title of this major programme to be? I doubt it. Also did they speak to people with learning disabilities when they came up with the term STOMP? But this point I'm making does not take away the excellent work they are achieving on reducing inappropriate use of medication to people who don't have a mental health problem.

I was at a conference for people with learning disabilities about 'making complaints easier'. The main speaker used terms like TCP, STOMP and so on.....
The audience were gave 'red' cards if they didn't understand what was said. Well the speaker discontinued their talk because of the sea of red across the audience.

Please don't get me wrong I'm at NHS England this coming Friday and the Transforming Care team are doing some great work and fighting against a system that was set up 30 years ago and are in for the money. I sincerely hope that they achieve the aims of the programme and we should all support them as much as possible. But thinking about Assessment and Treatment Units, I don't recall 'Valuing People' in 2001 of speaking about this issue, maybe I'm wrong. It took the BBC secret filming at Winterbourne View and one most tragic death of LB for everyone to start thinking 'is this right'?

I could go on and on but sometimes I might mistakenly use the term 'placement' or 'challenging behaviour' or 'behaviour that challenges' every now and again but I'm trying to change the language I use. And if I do make a mistake please do not shoot me down or call me a hypocrite. Just be polite and ask me to change my language and don't do a literal 'hit and run'.

We really do need to think about the message we are giving to people with learning disabilities, their families and student nurses, student psychologists, student social workers etc. We need to think about the language we use. We need to stop getting people with learning disabilities  to fit into our world. Life progresses all the time. When I trained some ‘clients’ were forced to sniff ‘smelling salts’ if they behaved in a certain way. I thought this was barbaric but it was accepted. You definitely cannot do this now. I imagine today’s terms, use and behaviour will be tomorrow’s crime. Let's build a world together.

Communication is a two way process and we should using words that people accept and understand. 

Communication is the key!
Its a home not a placement!




Steve Hardy
Can you understand it? team



Amended from the original published blog.