1. ARE SOME DISABILITIES MORE EQUAL THAN OTHERS? CONCEPTUALISING FLUCTUATING OR RECURRING IMPAIRMENTS

2. Overview  Understanding disability  ‘Not disabled enough?’ or ‘Having a disability ‘sometimes’’  The great terminology debate  The role of discourse  Student views

3. Understanding disability  Medical vs social: Until 1980s policy, provision and discourse dominated by aetiological approach.  Work of Union of the Physically Impaired Against Segregation (UPIAS 1976) highly influential. Applied concept of interpretation to disability studies.  Oliver (1990, 1996) most associated with establishing social model in the public domain.  Social model acknowledges role of society in imposing limitations on individual.  In both cases, disability generally conceptualised as unchanging.

4. ‘Not disabled enough?’ or ‘Having a disability ‘sometimes’’  Many impairments have tendency to vary in intensity over time e.g. Chronic Fatigue Syndrome/ myalgic encephalomyelitis (CFS/ME), epilepsy or diabetes.  Though many of these impairments now formally recognised, diagnosis (e.g. ME) can be difficult, and lack of acceptance can exist.  Bury (1988, 1991, 1997, 2000) has written extensively of the impact of ‘chronic illnesses’ and ‘biographical disruption’.  Having a disability ‘sometimes’ (Peters 1993).  Growing awareness: provision, legislation and research.  Episodic Disabilities Framework (O’Brien et al 2008, 2009).  Episodic Disabilities Employment Network (EDEN) and Episodic Disabilities Network (EDN).  Canadian Working Group on HIV and Rehabilitation (CWGHR).  McKee 2007; Lightman et al 2009; Vick and Lightman 2010; Vickers 2001.

7. The great terminology debate  Terminology key challenge in promoting awareness and understanding.  Just another label?  Multiple possible terms: long term, progressive, fluctuating, recurring or past.  Equality Act 2010 makes some attempt to add definitions:  motor neurone disease, muscular dystrophy, dementia - progressive;  rheumatoid arthritis, myalgic encephalitis (ME)/chronic fatigue syndrome (CFS), depression, epilepsy as fluctuating or recurring  an impairment which has lasted or is likely to last at least 12 months constitutes a long term condition.  ‘there are special rules covering recurring or fluctuating conditions’ (UK Government 2010).

8. The great terminology debate  General Medical Council (2010) acknowledge the term fluctuating conditions.  Department of Health (2007) uses terms progressive and fluctuating conditions.  Work Life website - chronic fluctuating conditions. Co-developed by the Department of Work and Pensions, Multiple Sclerosis Society, and organizations. Info on aspects of the law, benefits and disabled peoples’ rights.  Of notable importance in Higher Education also: London School of Economics acknowledges potential impact of long term medical conditions, London South Bank University suggests students consider potential for fluctuations when disclosing and negotiating reasonable adjustments.

9. The role of discourse  Foucault – knowledge and meaning produced through (often competing) discourse or organisation of assumptions (1980).  Importance of the lived experience in understanding mental illness (influenced by existential phenomenology) (1961).  Technologies of the self – tools to produce own ethical understanding, incorporating ‘bodies and souls, thoughts, conduct, and way of being’ (p. 18, 1988).  Elements of language/ discourse, power, autonomy, identity creation/ evolution.

10. Student views Terminology Episodic Inconsistent Fluctuating Unpredictable Variable Changeable Unpredictable On/ off, up/ down, come and go Unseen Capricious Seasonal -Support for and criticisms of episodic and inconsistent (too regular (like TV), possible negative connotations). -Interesting binary perspective for some students (e.g. on/ off) whilst others described a continuum. -Students discussed usefulness of having a shared term in fostering increased legitimacy, but also difficulties in finding one that would be appropriate for all impairments, and all experiences of one individual. - Also noted how quickly concepts can become out dated/ superseded by new terminology, with potential to cause more confusion.

11. References Bury, M. 1988. Meanings at risk: the experience of arthritis. In Living with chronic illness: the experience of patients and their families, ed. R. Anderson and M. Bury, 89-116. London: Urwin Hyman. Bury, M. 1991. The sociology of chronic illness: a review of research and prospects. Sociology of Health and Illness, 13 (4): 451-468. Bury, M. 1997. Health and illness in a changing society. London: Routledge. Bury, M. 2000. On chronic illness and disability. In Handbook of medical sociology, ed. C. E. Bird, P. Conrad and A. M. Fremont, 173- 183. New Jersey: Prentice Hall. Department of Health. 2007. Section 11 – Key problem areas and solutions. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4906949 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4906949 Foucault, M. 1961. Madness and Civilization, London: Tavistock. Foucault, M. 1980. Power/Knowledge: Selected Interviews and Other Writings 1972-197. London: Harvester. Foucault, M. 1988. Technologies of the self. In L H Martin, H Gutman and P H Hutton (eds) Technologies of the self. Amherst: University of Massachusetts Press, pp.16 - 49 General Medical Council. 2010. Gateways guidance: 4.3 Mental illness and fluctuating conditions. http://www.gmc- uk.org/education/undergraduate/4_3_mental_illness_and_fluctuating_conditions.asp http://www.gmc- uk.org/education/undergraduate/4_3_mental_illness_and_fluctuating_conditions.asp Lightman, E., A.Vick, D. Herd and A. Mitchell. 2009. ‘Not disabled enough’: Episodic disabilities and the Ontario Disability Support Programme. Disability Studies Quarterly, 29 (3): http://www.dsq-sds.org/article/view/932/1108 http://www.dsq-sds.org/article/view/932/1108 London School of Economics. 2010. Services for students with long-term medical conditions. http://www2.lse.ac.uk/intranet/LSEServices/divisionsAndDepartments/disabilityService/guidesToServicesForStudentsWithDisabilities/ servicesForStudentsWithLong-term.aspx http://www2.lse.ac.uk/intranet/LSEServices/divisionsAndDepartments/disabilityService/guidesToServicesForStudentsWithDisabilities/ servicesForStudentsWithLong-term.aspx London South Bank University. 2010. Welcome to Disability and Dyslexia Support (DDS). http://www.lsbu.ac.uk/clsd/disabilities/http://www.lsbu.ac.uk/clsd/disabilities/

12. References McKee, E. 2007. Re-examining the role of episodic disabilities in the workplace. Canadian Arthritis Patient Alliance Voices 2007. http://www.arthritispatient.ca/index.php/resources/re-examining-the-role-of-episodic-disabilities-in-the-workplace/ http://www.arthritispatient.ca/index.php/resources/re-examining-the-role-of-episodic-disabilities-in-the-workplace/ O’Brien, K. K., A. M. Bayoumi, C. Strike, N. L. Young and A. M. Davis. 2008. Exploring disability from the perspective of people living with HIV/AIDS: development of a conceptual framework. Health and Quality of Life Outcomes, 6: 76 O’Brien, K. K., A. M. Davis, C. Strike, N. L. Young and A. M. Bayoumi. 2009. Putting episodic disability into context: A qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. Journal of International AIDS Society. 12: 30 Oliver, M. 1983. Social Work with Disabled People Oliver, M.1990. The Politics of Disablement.Basingstoke: Macmillans. Oliver, M. 1996. Understanding Disability: From Theory to Practice, Basingstoke: Palgrave Macmillan. Peters, S.L. 1993. Having a Disability 'Sometimes'. Canadian Woman Studies, 13 (4): 26 – 27 UK Government. Disability and the Equality Act 2010. http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068 http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068 UPIAS. 1976. Fundamental Principles of Disability. London: Union of the Physically Impaired Against Segregation. Vick, A. and E. Lightman. 2010. Barriers to Employment Among Women With Complex Episodic Disabilities. Journal of Disability Policy Studies, 21 (2): 70 – 80. Vickers, M. H. 2001. Work and unseen chronic illness: Silent voices. London: Routledge Worklife. 2009. http://www.yourworkhealth.com/http://www.yourworkhealth.com/