title: The Being in some body: An Autoethnographic Account of Being and Becoming-in-the-world with Multiple Sclerosis

authors: Allbon, Caroline

subjects: embodiment

abstract: Embodiment and experience as a nurse, wife, mother, researcher, and educator living and working with Multiple Sclerosis (MS) is the focus of this study. MS is a chronic de-generative neurological illness. It was confirmed in my being in 1998. Through my chosen approach of autoethnography as method, and on the basis of my work into and on my ‘self’ and ‘being’, I invite a radical review of the professional organization and medical(ised) treatment of those with MS and with similar chronic conditions. 
My aims are to generate research that goes beyond the passive construal of the body typical of medical research to a process through which embodiment can be understood not only as representation of the body but as a significant influencer of a semblance of actuality or verisimilitude. In this work I place my experience in conversation with scholarly voices critiquing embodied experiences of self and being in the world as heuristic inquiry. The intertwining relationships between self, body, and work as mutual organisational relationships are examined through the development of a self-reflexive praxis, in which embodiment, experience, and meaning-making resonate through autoethnography as both topic of study and constituent of the research experience. 
By drawing on first person narrative accounts of my experiences since the confirmed diagnosis of MS, I make visible some of the seemingly invisible effects of living and working with this degenerative illness. I chronicle and analyse my engagement with a profession whose calling is to care for those, who like me, live with chronic health conditions that may periodically present as acute or increasingly debilitating experiences. My voice is clearly present in this text, bestowing an authorial voice from my body to re-view, re-veal, re-tell highly personal accounts specifically focusing on how I, the researcher as writer, have explored the impacts of a confirmed diagnosis of MS on my life and the lives of those I care about. 
Through this research, I have explored and enhanced an integrated sense of self deeply affected by the often-prevailing medicalised change in my identity as I Carrie, who has MS. I challenge the separation of mind/body, of conscious/unconscious, of emotion/cognition, and of conceptual/actual as typical and still dominant in medical specialist approaches to meaning making. I also question the institutionalised forms of professionalism that sees the medical encounter as a supreme example of surveillance: the doctor questions and investigates - the patient is the passive object. I propose that meaning resides in embodied experience. I tell of my experiences that seem pertinent to the creation of my best possible life with MS. Yet these experiences seem undervalued or even absent from my diagnosis and treatment in various aspects of the ‘helping role’ and of ‘professional care’ I was able to access:
 
I was now being viewed as a disabled person. No abled-bodied person would tolerate this! I wanted to have some control and rights over my changed life. The best way forward was to merge my old and now new ways of being to regain some control and dignity.
(Personal Journal, 1998).

In this research, I focus on everyday performances by stepping consciously and creatively onto the stage as a life-long member of MS. I tell of how, initially from frustration with the medical professionals but increasingly from a source of creative self-direction, I explore the transformation of my body through the performance of reconstructing illness. As a consequence of my attention to embodied change, I do not view my perceived physical, psychological, spiritual, artistic, and thus ‘social’ worlds merely as discrete categories of experience commonly isolated by empiricists. It appears to me that this attention I give myself is restoring and empowering this fully alert and engaged ‘Carrie who flourishes’ - even with MS. The research approach brings personal experience, reflections, and insights to the fore as heuristic inquiry to join a growing genre of research that embraces subjective matter: the lived experience of research and the insight of living research as inquiry. 
This inquiry contributes to modes of research that are intentionally transformational. I contribute to the development of research methods, research voicing, and ways of writing qualitative research. I connect my research on, from, and with self to the disciplines of organisational learning, management, and teaching. My study has implications for those who like me host MS or similar chronic conditions and for the supporting families, volunteers and communities. In particular, this research has implications for those professionals who provide a diagnosis, prognosis, treatment, and care for those who must live with a chronic condition of any kind. I hope it encourages all people entwined in such stories as mine, to seek life-enhancing communication as the primary responsibility of care for each other.

text: The Being in some body: An Autoethnographic Account of Being and Becoming-in-the-world with Multiple Sclerosis Embodiment and experience as a nurse, wife, mother, researcher, and educator living and working with Multiple Sclerosis (MS) is the focus of this study. MS is a chronic de-generative neurological illness. It was confirmed in my being in 1998. Through my chosen approach of autoethnography as method, and on the basis of my work into and on my ‘self’ and ‘being’, I invite a radical review of the professional organization and medical(ised) treatment of those with MS and with similar chronic conditions. 
My aims are to generate research that goes beyond the passive construal of the body typical of medical research to a process through which embodiment can be understood not only as representation of the body but as a significant influencer of a semblance of actuality or verisimilitude. In this work I place my experience in conversation with scholarly voices critiquing embodied experiences of self and being in the world as heuristic inquiry. The intertwining relationships between self, body, and work as mutual organisational relationships are examined through the development of a self-reflexive praxis, in which embodiment, experience, and meaning-making resonate through autoethnography as both topic of study and constituent of the research experience. 
By drawing on first person narrative accounts of my experiences since the confirmed diagnosis of MS, I make visible some of the seemingly invisible effects of living and working with this degenerative illness. I chronicle and analyse my engagement with a profession whose calling is to care for those, who like me, live with chronic health conditions that may periodically present as acute or increasingly debilitating experiences. My voice is clearly present in this text, bestowing an authorial voice from my body to re-view, re-veal, re-tell highly personal accounts specifically focusing on how I, the researcher as writer, have explored the impacts of a confirmed diagnosis of MS on my life and the lives of those I care about. 
Through this research, I have explored and enhanced an integrated sense of self deeply affected by the often-prevailing medicalised change in my identity as I Carrie, who has MS. I challenge the separation of mind/body, of conscious/unconscious, of emotion/cognition, and of conceptual/actual as typical and still dominant in medical specialist approaches to meaning making. I also question the institutionalised forms of professionalism that sees the medical encounter as a supreme example of surveillance: the doctor questions and investigates - the patient is the passive object. I propose that meaning resides in embodied experience. I tell of my experiences that seem pertinent to the creation of my best possible life with MS. Yet these experiences seem undervalued or even absent from my diagnosis and treatment in various aspects of the ‘helping role’ and of ‘professional care’ I was able to access:
 
I was now being viewed as a disabled person. No abled-bodied person would tolerate this! I wanted to have some control and rights over my changed life. The best way forward was to merge my old and now new ways of being to regain some control and dignity.
(Personal Journal, 1998).

In this research, I focus on everyday performances by stepping consciously and creatively onto the stage as a life-long member of MS. I tell of how, initially from frustration with the medical professionals but increasingly from a source of creative self-direction, I explore the transformation of my body through the performance of reconstructing illness. As a consequence of my attention to embodied change, I do not view my perceived physical, psychological, spiritual, artistic, and thus ‘social’ worlds merely as discrete categories of experience commonly isolated by empiricists. It appears to me that this attention I give myself is restoring and empowering this fully alert and engaged ‘Carrie who flourishes’ - even with MS. The research approach brings personal experience, reflections, and insights to the fore as heuristic inquiry to join a growing genre of research that embraces subjective matter: the lived experience of research and the insight of living research as inquiry. 
This inquiry contributes to modes of research that are intentionally transformational. I contribute to the development of research methods, research voicing, and ways of writing qualitative research. I connect my research on, from, and with self to the disciplines of organisational learning, management, and teaching. My study has implications for those who like me host MS or similar chronic conditions and for the supporting families, volunteers and communities. In particular, this research has implications for those professionals who provide a diagnosis, prognosis, treatment, and care for those who must live with a chronic condition of any kind. I hope it encourages all people entwined in such stories as mine, to seek life-enhancing communication as the primary responsibility of care for each other.

year: 2013

title: Wellbeing effects from family literacy education: An ecelogical study

authors: Furness, Jane Amanda

abstract: This paper describes a study that used community psychology theories to investigate family-focused literacy education programmes, evaluations of which usually focus solely on skills gains and their economic advantage. Specifically, the study drew on an ecological systems-based, culturally adaptive framework for personal, relational and collective wellbeing bringing much-needed new thinking to how family-focused adult literacy education might be theorised and practiced. The study traced the experiences of 19 adult participants in four family-focused literacy programmes in different communities in New Zealand over 18 months. Participant accounts from 79 key informant interviews, 12 classroom observations and programme documentation were scrutinized using latent theoretical thematic analysis which drew on broad perspectives of literacy, ecological systems theory, network theory and integrative theories of wellbeing. The study found that the programmes shared common principles and practices that prioritised holistic wellbeing whilst valuing literacy enhancement. It showed that participants experienced positive literacy, social and wellbeing-related outcomes. Programme effects were found to be interconnected and to flow on to other parts of participants’ lives and to their families and communities. We demonstrate community psychology’s critical contribution to a fuller understanding of family-focused literacy education.

text: Wellbeing effects from family literacy education: An ecelogical study This paper describes a study that used community psychology theories to investigate family-focused literacy education programmes, evaluations of which usually focus solely on skills gains and their economic advantage. Specifically, the study drew on an ecological systems-based, culturally adaptive framework for personal, relational and collective wellbeing bringing much-needed new thinking to how family-focused adult literacy education might be theorised and practiced. The study traced the experiences of 19 adult participants in four family-focused literacy programmes in different communities in New Zealand over 18 months. Participant accounts from 79 key informant interviews, 12 classroom observations and programme documentation were scrutinized using latent theoretical thematic analysis which drew on broad perspectives of literacy, ecological systems theory, network theory and integrative theories of wellbeing. The study found that the programmes shared common principles and practices that prioritised holistic wellbeing whilst valuing literacy enhancement. It showed that participants experienced positive literacy, social and wellbeing-related outcomes. Programme effects were found to be interconnected and to flow on to other parts of participants’ lives and to their families and communities. We demonstrate community psychology’s critical contribution to a fuller understanding of family-focused literacy education.

year: 2017

title: Community Based Coastal Monitoring: Developing Tools For Sustainable Management

authors: Rickard, Darcel

subjects: Science

abstract: Burgeoning coastal development, recreational use, and the future affects of climate change are placing increasing strain on regulators to manage risk associated with coastal hazards.  Low-lying coastal communities in particular are vulnerable to a range of natural hazards including coastal erosion, storm surge inundation, tsunami and water safety that come with varying levels of risk to life and property. New Zealand's coastal hazard monitoring network is patchy and resources are limited. As a consequence there is considerable potential for coastal communities are going to need to take a more active role in monitoring their environment and building data bases and knowledge that can be used to better manage their coast. This paper describes simple methodologies based on the needs of various community groups and sound science principles that can be used to monitor beaches and the coastal environment. By employing these tools councils, technical experts and community groups will be able to make better-informed decisions for managing activities in the coastal environment. 
One of the keys to the successful uptake of a monitoring programme by a community group is its relevance to the group. The programme and the tools provided must fit the interests, needs, capability and resources of the group. This project develops tools for coastal monitoring and targets coastal community groups such as Coast Care, Coastal Hapu, Secondary Schools, and Surf Life Saving Clubs. The monitoring methodologies have been developed in consultation with Tainui ki Whaingaroa hapu, Raglan Area School, and the Waikato Beach Care and Coast Care Bay of Plenty.
Successful methodologies for measuring changes on the coast are also those that are matched to the type of beach, use appropriate equipment, collect structured data, provide data to which analysis can be applied, incorporate local knowledge of the environment, and feed results back to the community and other interested parties such as councils and science organisations. This project provides the target groups with simple monitoring methodologies, field forms/checklists, and appropriate survey and measurement equipment (which have undergone field trials) to carry out coastal monitoring.  A web-based facility has been developed to input, check and store data; and provide immediate feedback using graphs and images. It also provides background information on coastal processes relevant to monitoring programmes.  In this manner, a scientifically robust data set is collected and stored within a secure and future proofed archive, providing valuable information to coastal groups for years to come.
Although the primary objective of this research is to develop a means for coastal communities to monitor changes in their environment, there are additional benefits associated with engaging communities in the study of their environment. These benefits include increasing awareness of coastal hazards, capacity building, providing valuable educational resources, and improving the temporal and spatial data coverage of information for the New Zealand coastline.

text: Community Based Coastal Monitoring: Developing Tools For Sustainable Management Burgeoning coastal development, recreational use, and the future affects of climate change are placing increasing strain on regulators to manage risk associated with coastal hazards.  Low-lying coastal communities in particular are vulnerable to a range of natural hazards including coastal erosion, storm surge inundation, tsunami and water safety that come with varying levels of risk to life and property. New Zealand's coastal hazard monitoring network is patchy and resources are limited. As a consequence there is considerable potential for coastal communities are going to need to take a more active role in monitoring their environment and building data bases and knowledge that can be used to better manage their coast. This paper describes simple methodologies based on the needs of various community groups and sound science principles that can be used to monitor beaches and the coastal environment. By employing these tools councils, technical experts and community groups will be able to make better-informed decisions for managing activities in the coastal environment. 
One of the keys to the successful uptake of a monitoring programme by a community group is its relevance to the group. The programme and the tools provided must fit the interests, needs, capability and resources of the group. This project develops tools for coastal monitoring and targets coastal community groups such as Coast Care, Coastal Hapu, Secondary Schools, and Surf Life Saving Clubs. The monitoring methodologies have been developed in consultation with Tainui ki Whaingaroa hapu, Raglan Area School, and the Waikato Beach Care and Coast Care Bay of Plenty.
Successful methodologies for measuring changes on the coast are also those that are matched to the type of beach, use appropriate equipment, collect structured data, provide data to which analysis can be applied, incorporate local knowledge of the environment, and feed results back to the community and other interested parties such as councils and science organisations. This project provides the target groups with simple monitoring methodologies, field forms/checklists, and appropriate survey and measurement equipment (which have undergone field trials) to carry out coastal monitoring.  A web-based facility has been developed to input, check and store data; and provide immediate feedback using graphs and images. It also provides background information on coastal processes relevant to monitoring programmes.  In this manner, a scientifically robust data set is collected and stored within a secure and future proofed archive, providing valuable information to coastal groups for years to come.
Although the primary objective of this research is to develop a means for coastal communities to monitor changes in their environment, there are additional benefits associated with engaging communities in the study of their environment. These benefits include increasing awareness of coastal hazards, capacity building, providing valuable educational resources, and improving the temporal and spatial data coverage of information for the New Zealand coastline.

year: 2008