23/07/2010 by lizit.

This is probably going to be one of my incoherent blogs, but may be good opportunity to play with some ideas.

Although my topic is around the learning of carers of different types within the autistic spectrum domain, a key element is the place of parents. I am exploring learning journeys as I want to understand better how the learning of lay people varies from that of professional, particularly given so much learning is on the job and the workplace of parents is the home. I am not interesting in diminishing the professional contribution, but I guess I am interested in the balance of power, knowledge, influence between the different players in the domain - and I am very conscious that the person central to the domain is all too often the one with least voice, i.e. the child.

Two thoughts are chasing around my head today:

• many of today’s major charities had their origins in the post-war period. Although the specifics of each varies, there was often a perceived need recognised by parents or others, for example see the history of Mencap  which was initiated by a parent inviting other parents to join her and grew from there. Part of the function of these organisations was to give a voice to parents and carers and to ensure the future well-being of the children with different disabilities as they grew up and the parents were less able to provide the same level of care.
• A major interest and concern of mine in the past has been that of ownership or control - the posh word for this seems to be agency. A key part of what I was observing in the early 1980s when working in the disability field was the change from primarily a care agenda for disabled people to a recognition that people with disabilities had views of their own and were capable of living full lives. My focus was on who owned disability organisations and I was seeing a change from philanthropic ventures to organisations of people with disabilities with a voice and purpose.

In the autistic spectrum domain, there continues to be a sense of struggle and fight to get needs met, with parents acting as advocates on behalf of their children. Is this part of a similar movement in the development of specialist organisations and ownership issues, or is it different, and in what way is it similar and in what way different.

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18/07/2010 by lizit.

Like many research students, one of my concerns is the need for some kind of originality in the work I am undertaking. I am still unsure exactly what that means - and how much originality is necessary - but it seems to relate to various different things.

It could be originality of method - not so much inventing a new methodology as using existing methodologies in different ways.

It could be exploring an area which hasn’t been explored before.

It could be exploring an area which has been explored before but from a different perspective.

It could be bringing a range of ideas from different areas together and looking at how they interconnect and may provide a different way of looking at an area.

The more I read about my area of interest - the learning journeys of those involved in caring for and supporting children and young people on the autistic spectrum - the more work I realise has already been done. I also realise that much of this work has been done from very specific perspectives: the support needs of parents following diagnosis; the parent as advocate; the continued professional development of teachers or doctors or social workers; the role of electronic media in informing patients. Although partnership is a theme - partnership between parents and professionals in various settings - it is unclear how much this is a reality most of the time, although there is a fair bit about the advocacy role of parents.

One of the possible areas of interest is the contrast between the formal processes and the informal processes, for example what the code of practice says should happen and what happens in practice - and why don’t the two match up. Another area is the whole question of whether there is an autistic spectrum community of practice. If it exists, where does it exist and in what form? Or is it a number of discrete areas of expertise in which some participants are able to act as gatekeepers giving access to their area of expertise, or infiltrators gaining knowledge of another area.

Looking at learning journeys is about the various ways in which people learn about the spectrum. Knowing that there is a mix of formal, informal and serendipitous probably doesn’t tell us much of itself, but when this is applied to the outputs of the domain, i.e. the services, resources, support, etc, and the decision making processes, life gets very interesting.

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04/07/2010 by lizit.

One of the things I have been puzzling over during the last month has been the apparent need for those involved in the use of biographical methods to defend their methodology in a way I have not observed with other authors. A couple of examples are pages 7-8 of Denzin and Lincoln’s “Handbook of Qualitative Research” with sections on Resistance to Qualitative Studies and Qualitative versus Quantitative Research and Chapter 10 in Merrill and West (2009) Is Biographical Research Valid and Ethical.

Both Merrill and West and Chamberlayne (2000) give a clear account of the historic development of the use of biography in sociological methodology over the past century or so. There is clear evidence of the use of narrative in the form of documents from the earliest days of sociological methods. Biographical methods first started to become significant during the inter-war period with the development of the Chicago School of Sociology and the publication of Thomas and Znaniecki’s “The Polish Peasant” and Shaw’s “The Jack the Roller”. People’s stories continue to be important in many texts published in the 1950s and early 1960’s, including Willmott and Young’s work on life in the East End of London and the subsequent move to suburbia, Townsend’s study of the family life of old people, Hoggart’s “The Uses of Literacy” and Jackson and Marsden’s semi- autobiographical account of education and the working classes. By the time I became an undergraduate in 1969, these texts tended to be considered light reading and the emphasis was on a more theoretical and scientific approach, perhaps in order to ensure the academic respectability of disciplines which were beginning to become popular with students, especially in the so-called ‘new universities’. The texts I was aware of as a student was work by Marx, Weber, Durkheim and Comte.

The late 70s and early 80s saw a new emergence of story telling with two distinct roots. One was the growth of the oral history movement. From my recollections, this had two elements. One seemed to relate to the growth in race awareness, especially following the racial disturbances in a number of major cities in the early 1980’s and the felt need to capture the stories of black people to provide younger black people with their own history distinct from that of the white population. The other, related element, was an attempt to develop connections between young and old with school students recording the stories of their elders. In time, the therapeutic benefits of story telling amongst older people were to become apparent. The other root was the burgeoning women’s movement and the development of a feminist sociology which aimed to give voice and substance to the women as well as men.

By the 1990’s, not only was story telling becoming a recognised and accepted part of the sociological cannon, but it was beginning to be challenged. Atkinson, writing in 1997, suggested that personal stories and narratives were being privileged inappropriately, and critiqued other writers, namely Arthur Frank, Elliot Mishler and Arthur Kleinman for their approaches to the use of personal narratives. These authors, together with Arthur Bochner, have challenged Atkinson’s views, leading to what Thomas, writing in 2010, refers to as an ongoing debate.

Thomas usefully summarises Atkinson’s argument and that of his critics, before expressing her own standpoint which recognises both the objective and subjective nature of sociological research, especially in a field such as her own which focuses on cancer patients. She usefully distinguishes the objective medical account from the patient experience and suggests that both have an authenticity and validity. As usefully, Thomas’s article is followed by responses by Atkinson, Bochner and Frank. Perhaps the most important message for me is the recognition that each of the authors is an acknowledged expert and each has a distinct position on the use of personal narrative in sociological research. It is not that one is right and the others wrong, but that all have a contribution to make in our better understanding of how people live in society. In this context, the advice of Merrill and West to experiment with different approaches and methodologies and to find one which fits makes perfectly good sense. It is not a case of trying to emulate a particular practitioner or adopt a specific methodology, but of identifying an approach which makes methodological and actual sense in a given context.

Atkinson, P. (1997). Narrative turn or blind alley? Qualitative Health Research, 7(3), 325-344.
Chamberlayne, P., Bornat, J., & Wengraf, T. (Eds.). (2000). The turn to biographical methods in social science. London: Routledge.
Denzin, N. K., & Lincoln, Y. S. (Eds.). (2000). Handbook of Qualitative Research (Second ed.). Thousand Oaks, CA: Sage.
Hoggart, R. (1957). The Uses of Literacy. London: Chatto & Windus.
Jackson, B., & Marsden, D. (1986). Education and the working class: Taylor & Francis.
Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Thomas, C. (2010). Negotiating the contested terrain of narrative methods in illness contexts. Sociology of Health & Illness, 32(4), 647-660.
Townsend, P. (1957). The family life of old people: An inquiry in East London: Routledge.
Willmott, P., & Young, M. (1960). Family and Class in a London Suburb. London: Routledge and Kegan Paul.
Young, M., & Willmott, P. (1986). Family and kinship in East London. London: Taylor and Francis.

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