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Health and disability matters

Health and disability matters. Health and illness are like two different countries. If we are lucky we spend most of our time dwelling in the first, though nearly all of us are, at some time or other, passport holders of both domains. (Susan Sontag) So what are health and disability like ?

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Health and disability matters

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  1. Health and disability matters Health and illness are like two different countries. If we are lucky we spend most of our time dwelling in the first, though nearly all of us are, at some time or other, passport holders of both domains. (Susan Sontag) So what are health and disability like ? March 2009 William Sherlaw EHESP Dr Nigel Monaghan NPHS Wales William.Sherlaw@ehesp.fr

  2. Disability: some postulates • All people with or without disabilities have their singularity and talents • All people respond to the environments in which they find themselves • These environments include the ‘culture of disability’ definitions, representations and models which interact with the people targeted by these models. Cf ‘Handicap est culture’ • Disability is a concept and like all concepts relational • Disability is complex and includes a dialectic between the individual and collective, between specific care and non-discrimination (citizenship) • Disability is a catch all generalisation • ‘Handicap est pluriel’ et les personnes handicapées sont plurielles

  3. Disability: some postulates • People with disabilities can be and do feel healthy • Disability should be seen within an interactive environmental and developmental life course perspective • The effect of an impairment depends on what stage of development it occurs and how the problem (and person manages) is managed • Fundamentally only the disabled person him or herself knows what it is like to be disabled. (Varela) but there are the ‘wise’ (Goffman) • The quality of life and well-being of people with disabilities will largely depend on: • the quality of their physical and sociocultural environment. • their care, education and support and the people providing that care, education and support

  4. The nature of impairment … • Impairments may be considered to be permanent to a degree but one must remember the body and brain nevertheless possess astounding powers of adaptation and plasticity

  5. The nature of impairment … • Sometimes they make no or very little difference to people’s lives • Amelioration of resulting effects (disability) possible through: • Changing self- perception of the impairment • Changing others’ perception of the impairment • Self-compensation and restructuration to compensate or invent new ways to overcome or adjust to the impairment. • Educational interventions • Changes to physical and institutional environment • Welfare system compensation of person or family to take account of extra costs, or misfortune • Total or partial replacement of organ or body part (prothesis, orthesis) e.g. artificial limbs, hip replacements, cochlear implants, neurological interventions

  6. The nature of impairment … • But generally people lose certain capacities and this loss is permanent and in many cases relatively stable • However losses can lead to surprising and emerging gains • Contrast with acute illness… and similarity with chronic illness • On to health

  7. Absence of pathology • According to Daniels (2008) Health may be considered to be « Absence of pathology » • This seems to have the merit of simplicity But it seems … • to ignore the experiential phenomenological aspects of health • and consequently to leave people with disabilities ‘beyond the Pale.’

  8. Good Health ! WHO’ s Definition Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity (WHO, 1946) This seems to be fundamentally flawed… (considering the previous slides) But it has also been criticized for being utopian Let us look at some more definitions …

  9. Some other definitions and ideas …on peut définir la santé comme: « capacité propre à individu, de faire face; la capacité d’affronter la réalité de soi-même et des autres, la réalité des difficultés, la réalité de l’âge en instituant chaque fois l’équilibre qui convient. » (Braun,Canguilhem, Frère, Gatty, & Joanna, 1988 ) Selon Sartorius (1998) Health can be defined as a state of balance that individuals establish within themselves and with their environment

  10. Health as a norm Selon Canguilhem « Ce qui caractérise la santé c’est la possibilité de dépasser la norme qui définit le Normal momentané, la possibilité de tolérer des infractions à la norme habituelle et d’instituer des normes nouvelles dans des situations nouvelles »

  11. Well-being – a personal view • Resources for living and opportunities: • Health • Money • Time • Social standing & cultural capital • Fulfilment of one’s potential may contribute to well-being • Conversely lack of health, money and time may limit the ability to achieve one’s potential • Is misery the opposite of well-being?

  12. The Medical Model of Disability Disease may lead to Impairment of function or discomfort which may lead to Disability which may result in Handicap if amelioration is not possible

  13. Problems with the Medical Model • When there is no cure then impairment is a constant factor in their life • Thus, in the absence of cure, when impairment leads to disability the only way to assist the individual to fulfil roles is to change the social and physical environments • This led to the development of the social model of disability…

  14. The Social Model of Disability Oliver 1990 • Impairment: • Lacking part or all of a limb, or having a defective limb, organ or mechanism of the body • Disability • Disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activitiesUnion of Physically Impaired Against Segregation 1976 (WHO year)

  15. Strengths of the social model • Social model theory in the UK rests on a distinction between impairment, an attribute of the individual body or mind and disability, a relationship between a person with impairment and society • Disability is defined as a social and environmental problem and thus needs to be addressed through social and environmental change. • The model encompasses systemic barriers, negative attitudes and exclusion along with the impairment

  16. Body function&structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors Interaction of Concepts ICF 2001 (WHO) Health Condition (disorder/disease)

  17. Other Models of Disability • Professional/Client Model • Fixer and fixee – disempowering of client • Tragedy/Charity Model • Often used by charities to raise funds - but is patronising and portrays people with impairments as unable to cope • Economic Model • Used by policymakers e.g. financial benefits to support disabled people or support their employment • Seeks to balance finance against right of individual to participation and fulfilment

  18. Other Models of Disability • Customer/Empowering Model • Professional is service provider to individual and family where client (not the professional) selects the services to be provided • Religious or Moral Model • Disability is a punishment for sins of this or previous lives, often stigmatises the individual/family among the religious community • Social Adapted Model • Developed from the social model but also takes into account individuals abilities and potential alongside their limitations • Acknowledges that impairment also does contribute

  19. The Politics of Disability, U.K. and U.S. UK • Disabled people oppressed • Distinguishes between impairment and oppression experienced • Disability is the social oppression not the impairment US • Disabled people oppressed • Distinguishes between impairment and oppression experienced Shakespeare et al 2002

  20. Criticisms of the UK Social Model • Denial that impairment does contribute to disability • Does not encompass personal experience of pain and functional limitation • It is not wrong to maximise functioning, i.e. to minimise impairment Shakespeare et al 2002

  21. Shakespeare et al… • Duality of impairment and disability - otherwise where does impairment end and disability start? • A barrier free environment is a myth • It is not possible for everyone to achieve inclusion in the workplace and economy • A mature society supports everyone on the basis of need, not upon the work they have done • Disability is complex, a plurality

  22. A More Sophisticated Approach • We are all impaired to some degree (genetic variation, age etc.) and therefore have limitations • We will generally support attempts to minimise those impairments and limitations • However we are not all oppressed on that basis – society has failed to deal effectively with impairments of a minority leading to exclusion, disempowerment and oppression • Shakespeare et al 2002

  23. A More Sophisticated Approach • Impairment and disability are part of a continuum or different aspects of the same experience made up of complex factors • Disability is not a medical condition nor is it social barriers alone, and it should not be overlaid with negative cultural meanings • Intervention at physical, psychological, environmental and socio-political levels are needed • Shakespeare et al 2002

  24. Targeted or Universal Interventions? • In the UK there is evidence that the better off are more likely to benefit from universal health promotion services (Acheson 1988) • But the better off also appear to benefit more from targeted interventions too (Belsky et al 2006) Two questions should be asked of targeted interventions • Will targeted interventions reach and benefit those they should? • Will they stigmatise?

  25. Universal Approaches • Universal approaches to address disability • Removal of barriers, e.g. access to buildings. Hearing loops, braille information etc

  26. Targeted interventions To address impairment • Targeted interventions to maximise function/minimise impairment To provide support where interventions to address impairment and disability have failed. • Targeted interventions to support the most vulnerable who remain disabled despite social re-engineering

  27. The Intervention Ladder • Eliminate choice (through regulation) • Restrict choice (through regulation) • Guide choice through disincentives (e.g. fiscal) • Guide choice through incentives (e.g. tax breaks) • Guide choice through new default policy • Enable choice (e.g. offer smoking cessation support) • Provide Information (inform and educate the public) • Do nothing (or monitor without acting) Nuffield Trust 2007

  28. State Actions and Disability - UK • Eliminate choice (require state bodies to have equality policies and impact assessments, require new buildings to be accessible by all) • Restrict choice (not allow new services to be established in unsuitable premises) • Guide choice through disincentives (e.g. fiscal • Guide choice through incentives (financial support for employers to accommodate disabled employees needs) • Guide choice through new default policy (?) • Enable choice (?) • Provide Information (e.g. London Underground stations with and without wheelchair access) • Do nothing (or monitor without acting…) Inspired by Nuffield Trust 2007

  29. Environments revisited • According to Shweder there are six different types of person-psychosociocultural envronment interactions • We may adapt this to people with disabilities

  30. Different types of interactions between intentional persons (psyches) & intentional worlds (cultures) • Considering the environment perspective: • Interactions may either be positive or negative. • POSITIVE - The persons intentionality may be supported by the world or amplified • NEGATIVE The persons intentionality may be contradicted or diminished.

  31. Different types of interaction From a person’s perspective • Active (where the person creates or selections his or her own intentional world/environment.[1]) • Reactive – where other persons or the persons themselves create or selection an intentional world in relation to the intentionality or the anticipated intentionality of the person(s). • Passives (where the person finds themselves in a world selected or created by others) [1]Le choix de choisir la passivité peut être un choix actif… cf la décision de certains apprenants face au mouvement pédagogique d’autonomie des apprenants de refuser d’apprendre à apprendre en disant qu’ils veulent être enseignés…

  32. This gives us 6 possibilities • Positive –active ( A gregarious person wishing to meet people sets up parties and creates an party atmosphere in order to facilitate meetings. ) • Positive –reactive Match making ( We create situations by inviting two single people to dinner and sitting them next to each other to favour dating). • Positive- passive (The rich man in his castle - The poor man at his gate…)

  33. Negative-active : alarm clock placed, far enough from the bed to oblige one to get out of bed, the previous night to counteract one’s anticipated lack of desire to get up early next day… , whistling in the dark to offset fear, - Avoidance of looking at seductive things e.g. Window shopping !) (temptation) - In this sort of interaction one selects a world to protect one’s self from one’s own psyche, behaviour and reactions. • Negative reactive : We protect others from the effects of their curiosity or their desires which may not be attuned (according to us) to their particular stage of development e;g. We prohibit children from watching pornographic or violent programmes or Internet sites ( Parental control etc). • Negative passive : The arrival of a Spanish nurse in a foreign country (whose nursing qualification is not recognized)

  34. Articulating this with the idea of stewardship and theories of justice • From a stewardship stance this bestows a duty on health, social and educational professionals to organise their interventions in such a way as to take environments into account AND also the possibilities and wishes of the person. • We may rank such interactions according to our values

  35. A possible ranking of interactions regarding promotion of autonomy • 1. active positive • 2. active negative • 3. reactive positive • 4 reactive negative • 5. passive positive • 6. passive negative

  36. The paradox of DALYS • DALYS were an improvement on ‘lost life years’ Since health is more than just the number of years lived… Health services aim to a) prolong life b) but also prevent and treat disabling conditions On the positive side: • DALYS attempt to incorporate the consequence of disease (impairments and resulting disabilities) into the estimation of the burden of disease

  37. The paradox of DALYS… • But like Daniels’s definition the estimation is founded on pathology. • And disability is treated as an individual issue (Tragic individual model (Oliver M.) • The phenomenological experiential aspects of health are ignored in the pursuit of objectivity • Years lived with disability are given less weight than other years • Sociocultural contexts are deliberately put aside to favour universalistic comparisons. (Advantages & disadvantages)

  38. The Problem with DALYsand a possible solution In order to permit comparison of health gain between different interventions health economists often use QALYs, quality adjusted life years, and DALYs, disability adjusted life years. However Mont (2007) has argued that DALYs are a poor indicator of the effect of public health interventions on the lives of people with disabilities. QALYs and DALYs are consistent with the medical model of disability. DALYs could be adapted. Living with disability in an inappropriate environment could result in lower quality of life than living with the same condition in an appropriate environment. This type of analysis could be used to argue for environmental change.

  39. I’m fine Thank you There is nothing the matter with me, I’m as healthy as I can be I have arthritis in both me knees, And when I talk, I talk with a wheeze. My pulse is weak , my blood is thin, But I’m awfully well for the shape I’m in. Arch supports I have for my feet, Or I wouldn’t be able to be on the street Sleep is denied me night after night, But every morning I find I’m allright. My memory is failing, my head’s in a spin, But i’m awfully well for the shape I’m in.

  40. The moral is this as my tale I unfold – That for you and me who are growing old It’s better to say « I’m fine », with a grin Than to let folks the shape we are in. How do I know that my youth is all spent? Well, my « get up and go » has got up and went. But I really don’t mind when I think with a grin, Of all the grand places my « get up » has bin. OLd age is golden, I’ve heard it said, But, sometimes I wonder, as I get into bed. With my ears in a drawer, my teeth in a cup. My eyes on the table until I wake up. Ere sleep overtakes me, I say to myself, « Is there anything else I could lay on the shelf ?

  41. When I was young my slippers were red, I could kick my heels over my head When i was older, my slippers were blue, But still I could dance the whole night through. Now I am old, my slippers are black I walk to the store and puff my way back. I get up every morning and dust off my wits, And pick up the paper and read the « Obits » If my name is still missing, I know I’m not dead, So I have a good breakfast and go back to bed !

  42. MERCI THANK YOU

  43. When is a person old ?Who decides a person is old ? • In Afghanistan sometimes people do not know their date of birth – how long they have been on earth • When do they become old ? Who decides this ? At 60 ? At 65 ? At 80 ? And if the person doesn’t know his or her age ?

  44. When is a person disabled ? • A person is « mentally retarded » when we say he is. Mental retardation is not a fact, but a label or classification applied to a a very diverse group of people – often for purposes of segregating or restricting them, although sometimes for the purposes of providing services not available to all in the community - Paul Friedman (1976) voir Angrosino M. in Jenkins et al (1998) • Cf « A person is disabled when we say he or she is disabled » (Remember in France before the 11 February 2005 this was the case.) Definition in French Legislation 11 February 2005 « Constitue un handicap, au sens de la présente loi, toute limitation d'activité ou restriction de participation à la vie en société subie dans son environnement par une personne en raison d'une altération substantielle, durable ou définitive d'une ou plusieurs fonctions physiques, sensorielles, mentales, cognitives ou psychiques, d'un polyhandicap ou d'un trouble de santé invalidant. » Back

  45. British Social model definition • “The disadvantage or restriction of activity caused by contemporary social organisation which takes little or no account of people who have impairments and thus excludes them from the mainstream of activities” • “Disability should be reserved for the mechanisms of social oppression that all disabled people face BCODP Back

  46. Environments Birds do not make the sky: the sky makes birds Fish do not make the sea: the sea makes fish Edward Bond A simplification… and perhaps what distinguishes fish from humans is that humans do and can create environments for themselves and others for better or worst…

  47. Is this fish handicapped ?

  48. Imagine a world where all the roads were vertical. Who would be disabled then ?

  49. A Question of Aptitude • A Musician must have a good ear ! • Someone in a wheelchair can’t possibly be a Physical education and sports teacher !?

  50. You need a good ear ! No ?! • Beethoven • Evelyn Glennie link to video http://www.ted.com/index.php/talks/evelyn_glennie_shows_how_to_listen.html BACK

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