In the beginning…
There is no handbook for starting an organisation. You must do your best and as Maya Angelou says, ‘when you know better do better’.
C-Change was explicitly set up to support people who had been assigned ‘challenging’ reputations. As a Commissioner involved in closing long stay institutions, such as Lennoxcastle Hospital, I had seen people move out of the hospital with support, something would happen, and they would return to the hospital, like a parcel; support withdrawn. Another layer of labels ‘troubled’, ‘difficult’, ‘challenging’ would be paper mâché’d over their personhood, making it harder and harder to identify the human being within.
Families would often be the only portal to that inner person, speaking of their loved ones through memories of happier times. Reflecting joy and potential in the hope that others would see beyond the ‘monstrous creation’ written into being in case notes and files.
The organisation was shaped to flex, change, and move as required to meet the changing needs of the people we work for. In the early days we talked about supporting people who had been assigned reputations for challenging services. This was an effort to distinguish between the service system perception and the lived reality of the person. It may seem like semantic wrestling, but words have power, they frame not only what we do but also how we do it. They convey our allegiances and our values.
As our practice and our thinking evolved, we listened harder to the people we worked for and their families. We drew on the work of great thinkers and humanitarians such as Herb Lovett, Judith Snow, Dave Hingsburger and John and Connie Lyle O’Brien. We understood that ‘behaviour that challenges’ is most frequently an expression of hurt and distress. It became clear that we did not want to be an organisation that defined itself as ‘supporting people with challenging behaviour.’ We wanted to support people to live their good life.
The challenge is ours; we must listen deeper; work harder to understand what the person needs of us and be willing to change to be that. It sounds so easy, yet it is hard. Our social care systems are designed to fit people in, not fit around people. For some people this does not work.
We know better, we should be doing better, because better is possible.
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