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BRITISH SOCIOLOGICAL ASSOCIATION ANNUAL CONFERENCE,

ASTON UNIVERSITY APRIL 2016

Losing touch: the haptic in the lived experience of Motor

Neurone Disease

Dr Jacquelyn Allen-Collinson

Director of Health Advancement Research Team (HART),

University of Lincoln

&

Dr Amanda Pavey

The Motor Neurone Disease Association of Queensland, Australia

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@HARTResearch

www.hartresearch.org.uk

Today

• Qualitative sociological research on lived experience of MND

• Haptic dimension

• Salient themes:

• Out of touch

• Loss of touch

• Unwelcome touch

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Motor Neurone Disease (MND) • Neurodegenerative disease – intersection of chronic / terminal

• Motor neurons in cortex, brain stem, spinal cord gradually diminish in number until lost entirely – muscles unable to receive signals, so atrophy over time

• Often rapidly progressing, destroys functional capabilities, incl. coordination, swallowing, respiration

• Life expectancy from diagnosis estimated at 2-5 years; a third of those diagnosed die within 12 months

• c. 5000 people living with MND in UK; numbers remain relatively stable; more men than women

• Each manifestation of MND different

• ‘Locked in’ failing body

• No bio-markers, specific symptomology or definitive diagnostic test currently available – ‘unknownness’ & unpredictability

• C. 5% hereditary

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• Relative paucity of extant qualitative research into MND

• Qualitative study with 31 UK & 11 Australian participants clinically diagnosed with MND

• F-T doctoral researcher: Dr Amanda Pavey, now Senior Regional Advisor, MND Association of Queensland (ex University of Exeter)

• In-depth semi-structured interviews n=42

• Help in accessing participants via auspices of MNDA UK & MNDA Australia

• Key aim: to provide insight into the lived experience of MND

• Distinctiveness: phenomenological sociological perspective

• Also sensory dimension – here we focus on the haptic (contra ocularcentrism of ‘western’ sensorium)

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Phenomenological sociology • Phenomenology focus on ways of being-in-the world, to provide

detailed, grounded insights into corporeality of existence

• Challenge taken-for-grantedness via bracketing / epochē

• Seeks ‘essences’ of structures of experience – patterns, not individualistic, subjective, experience

• Focus on Leib (lived body) rather than Körper (object body)

• Adopting more sociologised form of phenomenology (Allen-Collinson 2011):

• highlights structurally, politically and ideologically-influenced, historically-specific, and socially situated nature of human embodiment & experience

• Powerful theoretical linkage

• Particularly apposite Merleau-Ponty’s focus on the centrality of the body in our being-in-the-world flesh-of-the-world

• M-P’s notion of sensory reversibility – touch / touched

• Also, Leder’s (1990) conceptualisation of bodily ‘dys-appearance’

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Participants Male Female

Age

40-49 2 3

50-59 5 3

60-69 6 2

70+ 5 0

Undisclosed 13 3

Total 31 11

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• Ethical approval via University of Exeter

• Participants 6 months or longer post-diagnosis

• Inclusivity enhanced by use of email and face-to-face

interviews –

• former particularly for those with verbal articulation

problems, extreme fatigue

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Key theme – haptic dimension

• Within sociology of health & illness, haptic dimension relatively under-examined, outside of:

• interactional touch (nursing staff and patients) &

• taxonomies of touch within nursing (e.g. Fredericksson 1999; Routasalo 1999)

• From our research, 3 key haptic sub-themes emerged:

• Feeling ‘out of touch’

• Lack of dexterity of touch

• Unwelcome medical touch – objectification (Körper)

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1) Out of touch • For those with MND, active principle of touching deleteriously

affected due to decreased muscular power - physically unable to reach out spontaneously to touch other people and things

• Often exacerbated by constraints of wheelchair:

• We went to the hospital to see my daughter, son-in-law, to meet our first grandchild for the first time. I wanted to pick her out of her crib for a cuddle and a kiss, like everyone could, like a normal Nan. But I couldn’t because I’m in a wheelchair. I had to wait for my daughter to place her in my arms, and then I couldn’t cuddle her because my arms are weak. I couldn’t help looking at her with mixed emotions. Happiness for her, sadness that I won’t see her grow up. That really hurt and I feel like I’m letting her and my daughter down, and my family. (Ellie, 55 years)

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2) Loss of touch • Physical act of touching and being touched signalled both

physical & emotional closeness, e.g., kissing, hand-holding

• Weakening of specific kind of haptic intercorporeality resulted in loss of closeness & intimacy, even challenged felt identity as intimate partner:

• I have been married for 41 years and we have always been very close. We talked through all our problems and were extremely close, often sharing a kiss or a cuddle and always holding hands when we were out walking our little dog. But now we don’t feel like husband and wife, it has become carer and patient, which is absolutely heart-breaking. (Brian, 62 years)

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3) Unwelcome medical touch

• Within medical settings forms of touch can have therapeutic benefits

• Paterson (2007) highlights communicative potential:

• ‘Touching within the therapeutic settings is potentially cathartic, expressive, and opens up a potentially non-verbal communicative pathway between bodies that brings them to proximity’ (2007: 153).

• However, can also be used as expression of power, including within hierarchical setting of healthcare system

• Doctors permitted to touch patients, latter not accorded same ‘right’ to instigate or reciprocate touching

• Condescending, patronising

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Objectification - Körper

• Participants recounted being objectified, literally pushed around so as to ‘demonstrate’ the pathologised MND body within medical environment, including for teaching purposes.

• Körper – object body of biomedical science:

• I felt like I was [used as] a prop so that she could give a demonstration lesson to the nurse. (Olivia, 59 years)

• She - the physiotherapist I had been referred to - became quite excited and fetched a colleague to observe with her. I gathered that I displayed a rare but classic gait which was in the text books. In other words I was a freak! (Fay, 48 years)

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• Ellie, mid-50s, recounted consultant delivering devastating news of MND diagnosis

• Condescending pat on the arm, walked away abruptly, whilst Ellie unable to follow due to her physical incapacity.

• He just said bluntly: ‘I’m sorry my dear, as I suspected, you have Motor Neurone Disease. It’s very serious, but you’re an intelligent woman and I know you would like to know’.

• I then asked him: how serious? Was I going to end up in a wheelchair? What was MND? He patted me on the arm, said, ‘Oh you don’t need to know any more yet’. Then walked off leaving me behind the curtain (cubicle) in bits. (Ellie, 55 years)

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Why sociological phenomenology?

• Extends/challenges conceptualisation of the ‘object body’ (Körper)

of much biomedical science – acknowledges ‘subject body’ (Leib)

• Epochē / bracketing require fundamental questioning of tacit,

taken-for-granted pre-suppositions re phenomena (similar to

sociology) – epochē only ever partial

• For sociologist, limitations of philosophical phenomenology

include its universalisation project, lived experience as that of

’everyman’ (see Allen-Collinson, 2011a)

• Sociologisation of phenomenology (also feminist & queer

phenomenology) following on from Schützian phenomenology,

acknowledges huge impact of historical, structural, socio-cultural

location & forces upon lived-body experience

• Powerful theoretical framework – also policy & practice

implications

• Important for GPs, healthcare professionals, carers and those

involved in support for those with MND to listen to, respect, and

seek to understand the ‘insider’ perspective

• To provide improved treatment programmes and quality of life

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Contact :

• Dr Jacquelyn Allen-Collinson, Director, Health Advancement Research Team (HART), Lincoln

• E: jallencollinson@lincoln.ac.uk • www.hartresearch.org.uk Twitter @hartresearch • Pre-print publications all available via ResearchGate:

https://www.researchgate.net/profile/Jacquelyn_Allen-Collinson/?ev=hdr_xprf

• Also Academia.edu: • https://ulincoln.academia.edu/DrJacquelynAllenCollinson • See also: • Allen-Collinson, J & Pavey, A (2014) Touching moments:

phenomenological sociology and the haptic dimension in the lived experience of Motor Neurone Disease, Sociology of Health & Illness, 36 (6): 793-806. http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12104/abstract

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Bibliography

• Allen-Collinson, J. (2011a) Intention and epochē in tension: autophenomenography, bracketing and a novel approach to researching sporting embodiment, Qualitative Research in Sport, Exercise & Health, 3 (1): 48-62.

• Allen-Collinson, J. (2011b) Feminist phenomenology and the woman in the running body, Sport, Ethics & Philosophy, 5 (3): 287-302.

• Allen-Collinson, J. and Leledaki, A. (2015) Sensing the outdoors: a visual and haptic phenomenology of outdoor exercise embodiment, Leisure Studies, 34 (4): 457-470.

• Allen-Collinson, J. and Pavey, A. (2014) Touching moments: phenomenological sociology and the haptic dimension in the lived experience of Motor Neurone Disease, Sociology of Health & Illness, 36 (6): 793-806. http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12104/abstract

• Fredricksson L. (1999) Modes of relating in caring conversation: a research synthesis on presence, touch and listening, Journal of Advanced Nursing, 30, 5, 1167–76.

• Leder, D. (1990) The Absent Body. Chicago: University of Chicago.

• Merleau-Ponty, M. (2001; 1945) Phenomenology of Perception, trans. C. Smith. London: Routledge & Kegan Paul.

• Paterson, M. (2007) The Senses of Touch: Haptics, Affects and Technologies. Oxford: Berg. • Pavey, A., Allen-Collinson, J. and Pavey, T. (2013) The lived experience of diagnosis

delivery in Motor Neurone Disease: a sociological-phenomenological study, Sociological Research Online, 18 (2).http://www.socresonline.org.uk/18/2/11.html

• Pavey, A., Warren, N. and Allen-Collinson, J. (2015) ‘It gives me my freedom’: Technology and responding to bodily limitations in Motor Neuron Disease, Medical Anthropology, 34 (5): 442–455.

• Routasalo, P. (1999) Physical touch in nursing studies: a literature review, Journal of Advanced Nursing, 30 (4): 843–50.

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