24/04/2011 by lizit.

Following on from the Identity memo 1, I want to explore another area which is important to my research and which also has a long root in my life, namely my interest in disability and related areas.

I suppose my first conscious interest in disability was in 1966, when as a 16 year old I went on a working holiday to a Leonard Cheshire Home and met people who had quite severe impairments for the first time. At the time, I can remember being impressed by the ethos of the establishment - the concept of family and not referring to disabled people as residents or patients. It made enough of an impression on me, that I returned the following year and began to look at possible career options that might involve working with disabled people.

However, my awareness of health and illness goes much further back than that. Before her marriage, my mother had been a nurse and she retained an active interest in her profession, acting as secretary to the local branch of the Royal College of Nursing. She had done both mental and general nurse training, but her interest was in mental health and she would speak of her experiences and about how difficult it had been to enter her chosen profession - she encountered a lot of opposition from her family because of the low status nurses were perceived as having in the early 1930s when she commenced her training.

I would guess that my mother’s stories had quite a lot to do with me choosing to join the Junior Red Cross and undertake basic training in first aid, home nursing and child care.

I can’t claim that I thought much about disability again until about 1980 when I was working for a local authority as voluntary organisations liaison officer. I was involved in the planning of our response to 1981 - International Year of Disabled People - which led to two specific projects - developing an access guide for the borough together with the head OT and involvement in establishing a local disability association. I also got involved in setting up a parent support group. At a personal level, the spin off from this was taking a postgraduate Masters degree and doing a research project on local disability associations and the implications of them being run by and for disabled people or by able-bodied for disabled. This linked to the thinking of the Wolfenden Report on the future of voluntary organisations and the role of intermediary bodies and to the changes within the disability movement more generally that recognised that disability was not an obstacle to being able to run organisations, engage in social and political action, etc. I can remember being shocked by some of the attitudes I heard expressed by people then responsible for the voluntary/charity organisations and also being impressed by what I saw disabled people doing.

My next career move was to leading a multi-disciplinary social services team with a focus on disability and older people. As described in identity memo 1, a key element of my work there was enabling our ‘clients’ to have as much control as possible over the services made available to them.

Moves followed into voluntary organisation management and motherhood. It was as my son began to develop that disability became a much more personal concern. It was very clear that my son was exhibiting different behaviour from other children of his age, and though I put some of this down to the effect of living in Germany and being between cultures, concern was also expressed by the Kindergarten he attended. I was subjected to a very difficult discussion with the Kindergarten staff when I was effectively told that it was probable my son would never live independently and would probably not be able to attend a normal school. To say this was done clumsily and without warning is an understatement. The fact that the conversation took place in German made it all the more difficult - was I really understanding what I was being told.

Following initial assessments with a German paediatrician, we learned we were returning to the UK. My hope was that my son’s behaviour would settle once he no longer had to cope with two languages and different cultural expectations. The reality was that very soon his school were making referrals to the school nurse and we ended up with CAMHS and the start of the long journey to finding out what lay behind my son’s differences and getting appropriate support for him. That journey also led me, together with others, to set up a parent support group and convinced me that it was essential for parents to be adequately informed and supported so that they could obtain the support their children not only needed, but had a right to.

I could unpick those personal experiences a great deal more - the attitudes of the different professionals I encountered, the lack of knowledge some professionals had of the support infrastructures, the journey to getting a statement for a very able and intelligent child who just was not coping in school, the encounters with mental health services and the failures of services to address needs appropriately. Elsewhere I have documented the roller coaster of emotions I experienced and the details of that journey.

Now I am able to step back a little. My son is now an adult and is doing very well. But I am still actively involved in parent support groups and my personal experiences are very much the driver for my research. Sometimes I feel I am too close to what I am researching and too influenced by my own experience. At other times, I recognise that even when going through the worst of times with my son, I was operating both as parent and professional and maintaining a level of professionalism and objectivity which I did not feel.

A further aspect of disability is now impinging on my life and consciousness. My own health and fitness has deteriorated, to some extent because of my failure to care for myself appropriately, and I am having to recognise there are things I cannot do that I might want to do, but my energy levels are inadequate.

So throughout my life, I haven’t been very distant from issues of health, illness, mental health, disability, and SEN.

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18/04/2011 by lizit.

A colleague on #phdchat has drawn my attention to a chapter in Maxwell (2005) on conceptual frameworks. I found this an interesting, informative and challenging read, particularly enjoying the use of diagramming techniques to understand the theoretical and conceptual underpinnings of a research project. This reflected some of my experience in refining my ideas and I will return to using mapping in the near future. As interesting, and in some ways more challenging, was the recognition of personal experience being an important part of a conceptual framework. Maxwell cites a number of writers including Reason (1989) and C. Wright Mills (1959) to support the view that life experience is valid. Reason’s introduction of the term “critical subjectivity” lends weight to the view that it is possible to be both subjective and objective.

Amongst the many suggestions made in the chapter is one of writing a note, or identity memo, reflecting on the development of ones own interest in the research topic, or aspects of the research topic. This seemed a helpful notion to me as a couple of aspects of my research are tapping areas which I have had a long term interest in. This posting reflects on the first of these, the whole area of what I have referred to as ‘ownership’ but which in academic speak seems to be ‘agency’ - but it may be that ownership is just a facet of agency - let’s see.

I am not sure whether my thinking about ‘ownership’ belongs initially to undergraduate days or first employment. My first degree was a combination of academic and professional education, leading to a degree in Applied Social Studies and a Certificate of Qualification in Social Work. There was a strong emphasis on psychodynamic psychology, which I realise now was focusing on ‘deficits’ in people with problems, rather than their strengths. I reacted quite strongly to this approach, being unable to reconcile it with the real world people were living and struggling in. Perhaps fortunately, one of my placements was more concerned with societal change than with changing individuals, and when I graduated, it was perhaps inevitable that I gravitated towards community development. It seemed to me that the basic tenets of community development - not doing things for people, but working together to achieve change - made more sense and also fitted better with my personal faith position as a Christian.

Through a series of community work posts, I became more increasingly convinced that it was important for people to both own their problems (wherever they came from) and also to own the means of tackling those problems and resolving them. I was influenced by the disability movement and the insistence that disabled people were not to be pitied but were perfectly able and capable of doing more or less anything given appropriate resources and removal of the attitudinal and physical barriers which restricted them. As a social services team leader in the early 1980s, I insisted on holding meetings bringing together people, who were our clients only because of age or impairment, and the service providers, from my own organisation and others, to agree together on appropriate ‘care packages’ - if somebody wanted to use the 3 hours a week home care service we could offer to get their house cleaned rather than their shopping done, that was their decision and right and we did not have the right to tell them what they needed. I did not see why professionals should make decisions for adults who were capable of making their own decisions if given the opportunity to do so.

Moving on, I held senior positions in 2 voluntary organisations. In one of those, the primary focus was on negotiating a contract for the provision of services - a notion which has become normal, but was then being trialled by a few local authorities with a few voluntary organisations. My concern was that this would lead to a commercialisation of the voluntary sector, removing some of its scope for innovation and challenge of the state, but also an awareness that underpinning the transfer of services from the state to the voluntary sector was an economic imperative to save money and I was not prepared to engage in fund-raising in order to do the work of the statutory sector. In the second organisation, the situation was more complex. It was a pan-London, church-based organisation with a network of projects throughout London. Funding was a mixture of local authority grants, money given by churches and a diocesan grant. Over the years, the projects had become more professional and local church groups were questioning why they should fund these activities, especially when they were unable to gain much information about what was being done in their name because of client confidentiality. Although the work was of high quality, it was removed from the churches with the unintended consequence that local churches neither owned the work nor felt any obligation to engage in social action themselves as they were already funding the projects to do this on their behalf. My view was that it was essential to return ‘ownership’ to the local churches and to enable them to identify what was appropriate social action in their areas, if necessary reconfiguring the professional projects. It was a very difficult time as it felt as though I was dismantling rather than building.

Time moved on. I became a mother and spent a few years living abroad. When I returned to the UK, I knew I could not realistically return to my previous career. I retrained, gained new interests, and developed an interest in educational technology. But my personal life was taking me in a different direction as it became clear my son had SEN. I was able to use my knowledge and skills to gain an understanding of the system and to ensure my son got the help and support necessary for him to achieve his potential - I owned the problem and exercised my agency. I knew other parents were not necessarily able to do this - they were effectively disabled - and became involved in voluntary initiatives to enable other parents to act.

I am not anti-professional - I have been involved in professional employment of one sort or another most of my adult life. I am against professionals disabling others when they could be informing and enabling people to take control of their own lives and own their problems and difficulties so as to engage in action to become the people they want to be. I still remember the amazement expressed by a social worker on a holiday project when she saw ‘inadequate parents’ organising activities and taking responsibility for large groups of children. By focusing on the positives, the difficulties can be overcome, albeit with struggle.

So my perspectives on ownership/agency are a mixture of personal belief, gut feeling, work experience, observation…

Maxwell, J. A. 2005. Qualitative Research Design: An Interactive Approach, Sage Publications, Inc.

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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.

Posted in stories, biography, methodology, narratives | Print | 1 Comment »

05/06/2010 by lizit.

An issue I have been tussling with for some time in my mind concerns confidentiality in auto/biography. Merrill and West discuss some the extent to which it is possible to disguise the identities of people, especially where sensitive material is being shared and recognise that although a number of identifying factors can be changed, it is not possible to hide identity completely from those who know the participant well.

Chrissie Rogers draws attention to a further issue in discussing her daughter: “there were some occasions where anonymity was impossible: those involving my daughter. I have talked to her about this research and her inclusion (which she agreed to), and I do not apologise for the lack of anonymity here because unlike children in general, many of whom become ‘able’ adults, she, like many of the participants’ children, will never be able to ‘tell’ her story via this particular medium.”

Liz Stanley describes the interaction between constructing one’s own autobiography and constructing the biographies of others. My story is made up of other people’s stories, just as my story is incorporated in the stories of others. The moment I declare myself as the mother of a son with Asperger’s syndrome, our stories interconnect. As I talk about experiences throughout his childhood, he becomes more of a person and more recognisable and identifiable. Unlike Chrissie’s daughter, my son is in the process of becoming an ‘able’ adult.

What are my options?

I can seek his permission for what I am doing? But how free is he to refuse - and if he does, where does that leave me?

I can consider whether I can tell my story in any meaningful way while airbrushing him out.

I can focus on the stories of others and seek to silence myself.

I can disguise my identity so as to disguise his - but how can I do this effectively?

Is even writing this blog post, and no doubt some of my previous ones, already going too far? Indeed, have I already gone too far in the many forum postings I have made over the years?

Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Rogers, C. (2007). Parenting and Inclusive Education: Discovering Difference, Experiencing Difficulty. Basingstoke: Palgrave.
Stanley, L. (1992). The Auto/Biographical I. Manchester: Manchester University Press.

Posted in biography, ethics | Print | 1 Comment »

03/06/2010 by lizit.

I’m reading Merrill and West’s book on using biographical methods and working through the first set of transcriptions. Perhaps inevitably, there is a lot of stuff going on in my head.

Perhaps one of the key learning points is seeing just how much my own perspective colours how I understand others. I was working on one of the transcriptions yesterday and can see very much the psychodynamics of the interaction and why I found it so difficult. At the same time, I can see how in other interactions, transference was working differently with me feeling far more positive about the exchange.

I am interested by the section on analysis - and the different ways in which Merrill and West approach the task. West’s use of the gestalt - a holistic approach - resonates with me, but I can also see how looking at the parts can be useful, as long as this does not become mechanistic when key ideas and insights can be lost within a category rather than the significance being recognised.

Perhaps because I am reading other people’s stories, I am also returning to my own. Although this stems as well from my attempts at diagramming the autistic spectrum domain, I found myself remembering the nightmare scenario of the only respite that could be offered to a troubled young man was a police cell - and having mental health workers in my house telling me I had no option but to ring the police as they had no appropriate provision (and they were from the tier 4 regional mental health services!). There is something totally wrong about a child acquiring a criminal record - a formal warning - for behaviour within the home stemming directly from a neurological condition.

But that points to the complexity of the domain. It may well be that it is possible to envision the people working as a community of practice, but the people come from different organisations and each organisation has its own procedures, systems and structures and each is involved in making available or rationing scare resources. A person might well see the relevance of making a particular provision, but that person also has a role within a system and…. Maybe it is easier and safer for those employed to care for and support people on the spectrum not to know too much about systems and organisations other than their own. Maybe too, this is when I have to look again at the work of Harry Daniels and Anne Edwards…

Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Edwards, A., Daniels, H., Gallagher, T., Leadbetter, J., & Warmington, P. (2009). Improving Inter-professional Collaborations: Multi-agency working for children’s wellbeing. London: Routledge.
Daniels, H., Edwards, A., Engeström, Y., Gallagher, T., & Ludvigsen, S. R. (2010). Activity Theory in Practice: Promoting learning across boundaries and agencies. London: Routledge.

Posted in biography, systems, community of practice, Aspergers/HFA, narratives, reflections | Print | 1 Comment »

31/05/2010 by lizit.

I’ve managed to plough through Liz Stanley’s “The auto/biographical I” and to read far more quickly Goodson, et al’s “Narrative Learning”. I want to capture some of the main ideas for me from the two books.

First and foremost is Stanley’s argument that there is no real divide between autobiography and biography - they are both part of the same and are constructed accounts of a life or part of a life.

The idea of a constructed account is evident in both books. Stanley uses a number of biographical accounts to demonstrate how the author has present a construction which omits essential and important aspects of the life being presented. She also shows how different authors can and do present very different interpretations of the same life. Such constructions often say as much, or more, about the author and their presuppositions than they do about the person. Goodson, et al, also make it clear that personally narrated life stories should not be considered as objective accounts, but rather they are the interpretation of the past that makes sense in that time and place and are liable to change as a result of further life experiences; in essence a life story narrative is a construction of one’s life and how it is currently understood.

Another common thread in both books is that our stories are part of other’s stories. When I hear somebody else’s story, it becomes part of my story. Whether or not I reference my own story, in telling the story of another in some senses I am telling my own story. This relates to the construction of stories described in the last paragraph, but it also relates to the inter-relatedness of humanity.

Goodson, et al, focus on learning, and recognise that learning takes place in a wide range of different settings and that often learning experiences, that are recognised as such, are triggered by specific events or critical incidents. In considering stories, they looked for learning potential (evidence of learning from the story) and action potential (what the story teller does with the learning). Whereas learning is frequently defined as involving some kind of change in the learner, Goodson, et al, appear to recognise that much of the learning implicit in people’s life stories has much more a tacit dimension and is not recognised by the story teller.

What are the implications for me and my research? Firstly, there is a clear recognition that when I hear the stories of others learning in relation to the autistic spectrum domain, my own experiences and understanding of those experiences influence what I hear and how I hear it. My reactions and responses may well say more about me than the person I am talking to. How do I guard against denying the voice of others because I am listening too much to my own voice?

Secondly, and perhaps less importantly, I am predetermining to some extent the nature and structure of the story by the initial question I ask. Clearly I do not want a question as open as “Can you tell me about your life?”, but maybe I need a question which invites people to tell me about the autistic spectrum domain from their perspective without suggesting a starting point. On the other hand, maybe for my purposes the semi-structured account is more efficacious if I can ensure that I leave room for people to include the stuff I may not ask about and may not realise that I want to know about.

Goodson, I., Biesta, G., Tedder, M., & Adair, N. (2010). Narrative Learning. Abingdon: Routledge.
Stanley, L. (1992). The Auto/Biographical I. Manchester: Manchester University Press.

Posted in tacit dimension, stories, biography, experience, learning | Print | No Comments »