Page 10 - Community Living Issue 31-3

Being seen: stigmatisation

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

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

10 Vol 31 No 3 | Spring 2018 community Living www.cl-initiatives.co.uk