The importance of telling stories
23 May 2016 | By Amanda George
In this guest post, Debbie Waters talks about her experiences of working with her local authority to discuss the care and support for her autistic son, Joe. Debbie has worked in a development role in health and social care for the past 12 years, and is the mother of two young men with autism and a two-year-old girl. She believes in learning from experiences to create positive change from the future, and shares some of her learning here.
A year ago I attended the last in a long series of meetings with the local authority and services involved in planning the education and care of my son, Joe. We had been stuck for some time because we had opposing views about what Joe needed. I came to this meeting prepared with all my counter arguments to their now familiar objections, and an internal, ‘if they say that, then I’ll say this’ had been looping in my head at 4am for weeks.
On the day of the meeting I was taken aback when the chairperson asked me to speak first. I hadn’t prepared for presenting my case – only for disputing theirs. For a moment my mind went blank, and then I decided the best thing to do was to tell Joe’s story from the beginning. When I finished the atmosphere in the room had completely changed. I realised no one had understood why I was fighting for what I was fighting for before. No one else in that room actually knew Joe in more than one context or at more than one point in time. Despite the tomes of paperwork, his autobiography wasn’t documented anywhere. The rest of the meeting focused on how we might be able to return Joe to the kind of environment and peer group he had enjoyed before, and the endless arguments about why we shouldn’t or couldn’t evaporated.
Using past experiences to inform future choices
This experience got me thinking about how important it is that people like Joe have a way to tell their story, or have their story known. I thought about the basis on which I or anyone else makes important decisions in life, and how I know what I might enjoy or be good at. How I know what will or will not work for me is all gleaned from my past experience – from my story. Joe’s social and communication difficulties are such that he cannot tell us in words what he wants, and he cannot or will not make even the simplest choices. Only by closely observing Joe, and knowing him well, can we gather the evidence to determine what options for the future might coincide with his own wishes, happiness and security. Professionals try to make such assessments based on their observations, but often they only know the young person in one setting and only for a short period of time. They may never have known that person in the situations they enjoy or perform best, and yet we assume they can advise on major and life altering decisions.
Over the past few years it has become increasingly clear to me that choices are made for people like Joe on the basis of what they can’t do (their disability); convenience of services (let’s put people with the same difficulties all together), and – when decisions do pay attention to history – based upon the young person’s worst behaviour. Again this is completely the opposite to how I, or anybody else, makes important choices. Don’t we choose to go into situations we know are likely to succeed in? Don’t we gravitate to people who compliment and can help us, rather than those who share our particular weaknesses and difficulties? And don’t we hope and strive to be judged and encouraged to replicate the best of our behaviour, and that our less wonderful moments might be understood, forgiven and even forgotten?
How can we enable people to have their story known?
We need to devise ways of recording the lessons from experience that are accrued in the lifetimes of those who cannot communicate such information, and we need to make sure that all decisions made on their behalf ‘match’ the autobiographical evidence. We need storybooks or history logs similar in format to a communication log:
‘ I was happy when I was (activity/place/companions/any other significant factors)’
‘I was anxious or upset when….’
‘ I made a lot of progress when….’
‘ My behaviour was least/most challenging when…’
It may well be that carers and supporters need to test the key factors by mixing and matching to establish whether it is person, place or timing that is most significant. We will also need to open our minds to trying things before assuming that something won’t be liked or won’t be suitable on the grounds of (dis)ability or other non-person centred criteria.
Learning from the past to build a better future
If person centred plans and even one page profiles are to speak for those who have difficulty speaking for themselves, then these need to be more than snapshots in time, and not just specific to that person’s current educational or residential setting.
We need to make sure we don’t lose the vital life lessons that teach us how to build on success, and how to avoid repeating mistakes, even trauma, for the young person. Everyone has the right to own their autobiography and for their story to be heard, acknowledged and learnt from. Decisions made for the future that aren’t grounded in lessons learned from the past will never be the best interest decisions we can and should be making.
To learn more about person-centred practices in health and social care, click here.
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