27/01/2011 by lizit.

Not sure how long it would take to share this, but I think I actually am finding the plot! It seems to have moved a long way from virtual worlds and learning journey though.

My research examines why the metaphors of fight and struggle are so prevalent in the stories of those involved in supporting and caring for children and young people with diagnoses of Aspergers and HFA.

In approaching the question, at a personal level I bring a range of experiences from different parts of my life. In the 1970s and 80s, I was actively involved with people with disabilities as a community worker and social work team leader. During International Year of Disabled People, 1981, I was engaged in a number of projects including developing an access guide and information pack for people with disabilities in the local authority area where I was employed. My MSc research focused on those disability organisations that could be described as specialist local intermediary bodies, and examined the practices and philosophies of those made up only of other organisations, those with an individual membership of people with disabilities and those with both organisational and individual memberships. I recognised the importance of empowerment and in my social work role, I focused on ensuring my ‘clients’ had an opportunity to express their views as to what services would be helpful to them and how these might best be delivered, an innovatory approach at the time.

During the 1990s, I became a service user rather than a provider, as it became increasingly evident that my son’s challenging behaviour was due, at least in part, to his neuro-diversity. I learned about child mental health and special educational needs systems, and suffered the mortification of my son being suspended from school. I was able to use my professional skills to navigate the system and to access the support my son needed. I also became a service user in my own right, receiving support from the community mental health services. When the opportunity presented, I took the opportunity to share the knowledge I had gained with other parents by facilitating a support group.

My son is now an adult and I have been able to reflect on my experience and to view the services I was responsible for providing and the services I have received against the backcloth of changing models and understanding of disability. Now as a researcher, I am exploring the metaphor of fight and struggle as it occurs within the narratives of parents, professionals and others involved in the care and support of children and young people with diagnoses of Aspergers and HFA, and also looking at media content generated by parents and others and found in print and electronic form. These accounts are interpreted and understood through an understanding of the systems, discourses and models which influence and structure the experience of becoming a parent of a child on the autistic spectrum, a teacher of children on the spectrum, a health professional, or any other person involved in offering care and support to these children and young people.

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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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