13/08/2010 by lizit.

A few weeks back I wrote about “The narrative turn” and the different perspectives there have been, and continue to be, on narrative research. Since then I have been giving some consideration to the “paradigm wars” - basically the contentious argument between quantitative and qualitative methods - and seeing some parallels between the two. Some of the arguments made against that form of narrative research which focuses on stories and life histories are remarkably similar to those posited against qualitative methods more generally. Similarly, those who rail against these methods appear to be looking for ways of making their qualitative work more structured and science-like so as to better match the values attributed to positivism and quantitative methods. I’m enjoying reading various articles and observing the fisticuffs taking place.

However, by reading these articles, I realise increasingly that I need to identify where I position myself - and why.

Some time ago I read Howard Becker’s classic paper “Whose side are we on?” and was somewhat cheered to find a case being made for recognising that no research is truly value-free - though the values espoused may vary. More recently, I have been looking at some of Arthur Frank’s writing and I’m finding “The Standpoint of Storyteller” helpful. In this article, apart from addressing Atkinson’s criticisms, Frank distinguishes stories from narratives, considers his standpoint and what brought him to that position, and makes some useful comments on the difference between his standpoint and that of the more traditional medical sociologist.

Importantly, Frank reminds us that people do not tell narratives - they tell stories. Story telling is about relationships - stories are not spoken into a vacuum, but require listeners - and listeners respond to the story as they hear it and relate to the story teller. He goes on to speak of the recuperative value of story telling - telling the story can help a story teller to place a distance between themselves and the event or condition the story focuses on (I guess this moves into the area of construction and objectifying reality…). Stories are more than data - too much focus on narrative and analysis can lose the relational context of the story telling. The researcher who is privileged to hear stories is also ethically and intellectually obliged to recognise and enter into relationship with the story and the storyteller.

In identifying his standpoint, Frank turns to his own story and his life and academic experiences. He arrives at a place which is about change - his position is not about describing the experiences of people who are sick but about making changes so that sickness can be experienced differently (I hope I am summarising him correctly there!). He says “To take a standpoint means to privilege certain aspects of what your biography shares with others.” There is nothing value-free here!

Frank goes on to differentiate the “ill person” and the “patient” - a “patient” is an “ill person” but an “ill person” is not a “patient” much of the time. Frank’s focus is on the “ill person” rather than the “patient”. Whereas Atkinson is a medical sociologist who views the doctor patient relationship, Frank focuses on the person. For Atkinson, the transaction between doctor and patient is important, but for Frank it is largely irrelevant. Similarly, outcomes are different - Atkinson is asking what can be learned to benefit the medical encounter and Frank is asking how the world looks from the perspective of an ill person.

This is relevant to me as I look at the participants in the autistic domain. How do I view the parents and children? Who am I speaking to? Am I relating stories or giving people a voice? What are the values underpinning my research and where do I stand?

Becker, H. S. (1967). Whose Side Are We On? Social Problems, 14(3), 239-247.
Frank, A. W. (2000). The Standpoint of Storyteller. Qualitative Health Research, 10(3), 354-365.

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02/08/2010 by lizit.

One of my ongoing interests, which I referred to at the end of my last blog, is the sense of struggle which seems to be present in so many accounts of parents in relation to getting the needs of their children with autism met.

At the moment, one of the things I am working on is mapping what I refer to as the autistic spectrum domain. By this I am thinking of the different systems which together provide support and care to children on the spectrum or which otherwise impinge on their lives. This includes the diagnostic system (mainly health focused), the education system (which actually seems to be made up of a series of sub-systems with a divide between the school, where children learn, and the administrative systems, which determine resources and which decide on the appropriate school and whether or not to assess the child’s SEN), the social care system (which many families will have no contact with but which others may receive respite care or other services from and which may become involved if a child is placed in a residential school). These systems exist within a number of other systems or constraints which are less involved directly with the child and their family - the political/policy making system which determines the law and how it is interpreted, the legal system which both ensures the law is adhered to but also adjusts the law through case decisions, the financial systems which determine how much money is made available to local authorities to provide for the needs of people with disabilities - and the other side of the financial system which involves the benefits available to children and families and the affect of having a child with a disability on the earning capacity of parents and the costs incurred in raising the child.

I have been struck by references to the number of professionals involved in the life of a child with SEN. Chrissie Rogers and Katie Truss both list the professionals involved with their own children at given points in time and their accounts resonate with my experience. Reading a chapter written by Anne Edwards and Ioanna Kinti is causing me to reflect on whether one of the reasons for the struggle metaphor being used so often relates to the numbers of professionals involved.

Edwards and Kinti focus on boundary issues between professionals. They discuss the opportunities and struggles inherent in boundary places: “when boundaries are pushed out to include more people within them, threats to exclusive expertise, meaning-making and identity ensue.” There is a clear indication that parents are very much at the periphery when professionals are readjusting their own boundaries and coming to understand the professional practices of other disciplines. It was only as “practitioners from different backgrounds were able to recognise how much they shared professional values, they were able to work together on the common task ….”

A key question for me continues to be that of how is the expertise of the parent acknowledged and how does the parent become recognised as a practitioner in a community of practice - and indeed the issue of whether there is actually a community of practice or a collection of tribes warring for supremacy!

Edwards, A., & Kinti, I. (2010). Working relationally at organisational boundaries. In H. Daniels, A. Edwards, Y. Engeström, T. Gallagher & S. R. Ludvigsen (Eds.), Activity Theory in Practice: Promoting learning across boundaries and agencies (pp. 126-139). London and New York: Routledge.
Rogers, C. (2007). Parenting and Inclusive Education: Discovering Difference, Experiencing Difficulty. Basingstoke: Palgrave.
Truss, C. (2008). Peter’s story: reconceptualising the UK SEN system. European Journal of Special Needs Education, 23(4), 365 - 377.

Posted in struggle, boundaries, community of practice, ASD | Print | No Comments »