The real challenging behaviour – by the professionals who think they know best
The label of ‘challenging behaviour’ is being turned back on those who use it. Sam Sly tells the story of #IAMchallengingbehaviour – and how a movement against an unfair and stigmatising term is taking off
I am sure that many campaigns, as with this one, came about through a passionate discussion putting the world to rights followed by the feeling that you shouldn’t just moan – you have to do something.
The rumblings of the I AM Challenging Behaviour campaign started in early 2017. Nic Crosby from GatherBuildWork and I were playing with ideas on how we could help the wonderful people we worked with who were being treated in horrendous ways and incarcerated in hospitals – because professionals had labelled them as having “challenging behaviour”.
Double standards
Our view was and still is that we all have ways, sometimes antisocial and undesirable, of expressing anger, frustration, sadness or anxiety. Yet, because we are valued citizens, when we show our feelings it is (a) often not seen as problematic and (b) called what it is – anger, sadness or anxiety. We don’t get negatively labelled for the rest of our lives.
However, the people we work with who have learning disabilities or mental health needs, who are often not seen as valued citizens, are slapped with a label of “challenging behaviour” and their life written off when they express their anger, frustration or anxiety.
Our first idea was to get a badge printed with the words “I have challenging behaviour”, which we could wear to demonstrate solidarity with those we worked with.
Genius idea
Then, in the summer last year, a group of Twitter and Facebook learning disability activists, including myself, Professor Chris Hatton from Lancaster University and Mark Neary, the father of Steven Neary, were having a chat about how fed up we all were with the negative, exclusive language used by professionals in health and social services.
I broached the idea of the badges. Chris made a suggestion which was a work of genius – to use the phrase “I AM challenging behaviour” instead of what I had suggested. This would enable wearers to show a commitment to addressing the real behaviour that needed to be changed – that of professionals and other people who think they know best and label others, and whose behaviour stops people getting the great lives they deserve.
So, I bought the first 100 badges in August and set up our Facebook page
and started using the hashtag #IAMchallengingbehaviour on Twitter.
The campaign is self-funding; badges are bought with donations and people send a stamped addressed envelope to save on costs.
We have now distributed 3,500 badges, reaching America, Australia, Canada, New Zealand and Slovenia, as well as Wales, Scotland, Ireland and all corners of England.
We have encouraged people to send in pictures of themselves wearing the badge and making the pledge to challenge behaviour.
Those wearing the badges have included Labour MPs, the chief inspector of the Care Quality Commission, the chief executive of Skills for Care, chief social workers for adults, Ofsted managers, whole teams of providers, social workers, journalists and others.
Most importantly, many of those wearing badges are advocating for themselves, family members or someone else with a learning disability. This is what makes me most proud.
Like-minded people
People have told us that wearing this little badge makes them feel part of a positive movement with like-minded people, which gives them strength.
One mother told me it gave her that little bit of extra courage she needed to speak up for her son when in a difficult meeting.
The badges have also sparked conversation and debates with people who know nothing about people with learning disabilities, and have contributed to policy change in Ofsted.
Bingo calls time on language
Recently we introduced “Say what you mean” bingo to tackle the negative use of language in services. Bingo cards, with words we want people to stop using or use more, can be taken to meetings and conferences and the words ticked off as people talk. It has been great to see debate and discussion generated from this new venture. n
To join, help to develop the campaign, donate or get a badge, get in touch through: t @SamSly2 f http://tinyurl.com/yc977vba or by using #IAMchallenging behaviour on either site
Sam Sly is a regulation, health and social care consultant who works with people with learning disabilities and their families
