Living in the brackets

Living in the brackets

[This post was originally posted online here on 23rd November 2015 by Liz Barrett on her Living with Autism blog]

Now I no longer have to be at home for Dylan at the end of the working day I make a point of going to events which I wasn’t able to get to previously.  Recently I have been enjoying a series of seminars on theory and methodology and was particularly looking forward to tonight’s discussion of the use of narrative methods in research. The research discussed during the seminar included projects undertaken with prisoners, asylum seekers and young people who have a parent with dementia. There was some reporting of project data but because the primary concern was with methodological issues the main focus of the discussion was story as a ‘way of knowing’.

Although the event was not ‘about’ the topic I write about here, I found myself making links with Dylan. One researcher, for example, reminded us of the difference between ‘story’ and ‘narrative’; the personal material which prisoners had shared during interviews were ‘stories’ but the researcher’s re-telling of these stories turned them to ‘narrative’.  This blog also incorporates these different layers of text in that it reports Dylan’s story through my narrative lens. Given the orchestration of such narratives is in the hands of the researcher (or blogger) rather than the story-teller, ethical issues are raised by the subject’s lack of power or control.

I wondered, during the seminar, if we could increase the power of subjects by involving them in the construction of their own narrative; could creative writing techniques be used, for example, to help them re-frame their stories? This was something I had tried to do, I reflected, when working on a project with prisoners some years ago (albeit as a writer rather than researcher). It is, however, considerably more challenging to find ways of involving Dylan in the construction of his own narrative. Perhaps this is something which marks the learning disabled out from other vulnerable groups whose stories we need to hear; refugees and asylum seekers, for example, or elders.

Inevitably the seminar discussion turned to the therapeutic use of story. Despite the unequal distribution of power, the subject was felt to benefit from involvement in the research. The simple act of ‘being heard’, it was argued, was helpful to those whose stories might not otherwise be told; ‘being present’ was therefore as much a gift as ‘the sacred stories’ themselves. Again I tried to apply these ideas to Dylan. Does a blog enable me to be more present for Dylan? Or would I hear his story anyway?  Am I present for him differently because I challenge myself to narrate his tale?

This blog is, however, no longer Dylan’s story: the switch from Living With Autism to Living With(out) Autism marks a shift from writing about Dylan to writing about the impact of Dylan’s move to residential care on me. In this situation, I am both story-teller and narrator. There is still, however, a therapeutic quality to the story-telling: my 100 day framework for transition is a sort of ‘half way house’ from where I look forward and back. This is limbo land, a place in brackets; I am neither living with autism nor entirely without it. From this healing space I can hopefully learn to let go lightly. It is, perhaps, a therapeutic place in so far as a blog offers the story-teller the gift of ‘being heard’.

One of the presenters at tonight’s seminar suggested that stories are powerful because they can challenge ‘master narratives’.  Single stories, it was argued, can undermine a dominant discourse, unsettling traditional power structures and establishing new knowledge. The examples given included beliefs about teachers wrongly accused of sexual misconduct and beliefs about the experience of being parented by a mother or father with dementia. In both cases, it was suggested, we need to listen to individual stories in order to adjust our perception of the issue.  As I drove home from the seminar I asked myself which ‘master narratives’ about autism Dylan’s story might challenge and transform.

See also Liz’s blog post Challenging Master Narratives

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