Oct 4th, 2007 Week 2, Session 3 I. Definitions II. Models Disability Impairment II. Models Social Medical Moral Personal Tragedy

The Body

Disability ? Impairment ?

Who is Disabled? Everybody? The largest minority Any disease or chronic health condition Who is deserving Interventions Political clout

Linton: Claiming Disability pg13 “Gill says the answer is no to those whose difference "does not significantly affect daily life and the person does not [with some consistency] present … to the world at large as a disabled person" (46). I (Linton) concur with Gill; I (Linton) am not willing or interested in erasing the line between disabled and nondisabled people, as long as disabled people are devalued and discriminated against, and as long as naming the category serves to call attention to that treatment.”

Impairment: refers to physical or mental limitations such as difficulty walking represents a deviation from the person's usual biomedical state.

Impairment: When does physical / mental variation become an impairment?

What is the difference between: Impairment Illness / “being sick” Chronic Health Conditions?

MIND / BODY STATE (Condition) Minimal Expected Variation State Unexpected Variation (DISABILITY) Minor Variation BIRTH DEATH Minor Variation Unexpected Variation (DISABILITY) Impairment (aches/pains, illness/sick/injury, chronic illness/disease, short/tall, manic/depressed…. ) =Variation

Disability ADA (Americans with Disabilities Act): (1) has a physical or mental impairment that substantially limits a major life activity, (2) has a record of such an impairment, or (3) is regarded as having such an impairment.

World Health Org. (WHO) 1980 Disability: Restriction or lack (from an impairment) of ability considered normal for a human being Handicap: The disadvantage experienced by a person as a result of impairments *ICIDH-1 (1980)

Sequence of Concepts WHO 1980 Disease or disorder Impairment Disability Handicap ------------------------------------------------------------------------------------------------------- impairment at the organ level disability at the person level handicap at the societal level

WHO 2001 Disability : outcome or result of a complex relationship between an individual’s: - health condition personal factors external factors INTERNATION CLASSIFICATION OF IMPAIRMENTS, DISABILITIES AND HANDICAPS “Exploring Disability” (p.22) Covers ICIDH – Resolve disability & handicaps by fixing impairment through med / rehab – environment is ‘neutral’ (p.25) International Classification of Functioning, Disability and Health (ICF) NO IMPAIRMENTS MENTIONED (nor handicapped)

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

Classifying classification b11420 Hierarchy: b Bodily structures b1 Mental functions b11 Global mental functions b114 Orientation functions b1142 Orientation towards others b11420 Orientation towards one-self.

Quantifying Quantifying functionality: 0-4% 0 No impairment 5-24% 1 Light impairment 25-49% 2 Moderate impairment 50-95% 3 Serious impairment 96-100% 4 Total impairment 8 Non specified 9 Non applicable

Where is the subjective (QOL)? Participation = + QOL

Other Classification Systems DSM IV ICD

ADA-ICF ADA: An individual with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such impairment, or a person who is perceived by others as having such impairment. ICF: Disability is an umbrella term for impairments, activity limitations or participation restrictions. Environmental and personal factors influence all aspects of health, functioning and disability.

67 US acts / programs that define disability - 35 have self-contained definitions (although some contain more than one definition)

CONFUSION REIGNS

Disability Activists (UK)1976 (UPIAS - Union of Physically Impaired Against Segregation) “the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities” Changes the focus of disability away from the individual to Society. (1st articulation of the “Social Model of Disability”)

SOCIAL MODEL States that inappropriate and discriminatory: Social Attitudes (Ableism), Sociopolitical Structures, Cultural Phenomena are the central problem for disabled people Social Construction: DISABILITY AND MATERIALIST EMBODIMENT Mike Clear and Brendan Gleeson JOURNAL OF AUSTRALIAN POLITICAL ECONOMY No 49 http://www.jape.org/jape49_2.pdf

II. Disability Models Moral Medical Personal Tragedy Social

MORAL MODEL Religious / Spiritual: Judea-Christian society Bodily difference = evil spirits, the devil, witchcraft, God's displeasure. Or reflecting the "suffering Christ", angelic or a blessing Buddhism Bad Karma - Past Lives Character: Refrigerator mother (Autism); weak / uncooperative / faking

MEDICAL MODEL (MEDICAL/Biomed/Individual/Pathological) Rehab - P. Health - Special Education - Psych - Nursing /SW WHO (WORLD HEALTH ORGANIZATION) US Code (ADA, SSDI, Voc Rehab…) Biomedical Model: “The emerging doctrine of specific aetiology that evolved into biomedicine had replaced the older philosophical understanding of health as a state of equilibrium and disease as a lack of harmony between people and their environment…” Beyond Biomedicine: Renegotiating the Sick Role for Postmodern Conditions; Susan McKay http://www.media-culture.org.au/0106/bio.html

Often Mixed in with Medical or Moral Personal Tragedy Charities Telethons Inspirational Stories Often Mixed in with Medical or Moral

Disability Activists (UK)1976 (UPIAS - Union of Physically Impaired Against Segregation) “the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities” Changes the focus of disability away from the individual to Society. (1st articulation of the “Social Model of Disability”)

SOCIAL MODEL States that inappropriate and discriminatory: Social Attitudes (Ableism), Sociopolitical Structures, Cultural Phenomena are the central problem for disabled people Social Construction: DISABILITY AND MATERIALIST EMBODIMENT Mike Clear and Brendan Gleeson JOURNAL OF AUSTRALIAN POLITICAL ECONOMY No 49 http://www.jape.org/jape49_2.pdf

SOCIAL MODEL (Variants) Social (Creation)- UK Social (Construction)- US Minority (Political/Cultural) Independent Living- ILM Human Variation Post-Modern / Dismodern

SOCIAL MODEL -- Social (Creation) - UK sees the historical convergence of industrialization and capitalism as restricting impaired people’s access to material and social goods, which results in their economic dependency and creates the category of disability Marxist and materialist interpretation of the world Social Creation: Does not suggest solutions; Does not include those “successful” in Capitalist system; ideology (a social theory of disability would include impairment; social model of impairment is needed) “…disablement is nothing to do with the body. It is a consequence of the failure of social organization to take account of the differing needs of disabled people and remove the barriers they encounter. The schema does not, however, deny the reality of impairment nor that it is closely related to the physical body. Under this schema impairment is, in fact, nothing less than a description of the physical body.” & “`As the conditions of capitalist production changed in the twentieth century, so the labour needs of capital shifted from a mass of unskilled workers to a more limited need of skilled ones. As a result of this, the Welfare State arose as a means of ensuring the supply of skill, and in order to "pacify" the ever increasing army of the unemployed, the under-employed and the unemployable‘ & “…Vasey (1992) has already pointed out, the collectivising of experiences of impairment is a much more difficult task than collectivising the experience of disability. ‘…disabling culture’ of contemporary capitalism, they refer to an ensemble of materially-evident relations and representations, including political economic systems. Central to the materialist account is a spatio-temporal focus on changing ‘modes of production’; for example, the shift from feudal to capitalist society and the associated rise of commodity relations and exchange. Oliver, M. 1996; ‘Exploring the Divide’, edited by Colin Barnes and Geof Mercer, Leeds: The Disability Press, 1996, pp. 55 – 72). http://www.leeds.ac.uk/disability-studies/book1.htm

SOCIAL MODEL -- Social (Construction) – US It assumes that inappropriate and discriminatory social attitudes and cultural phenomena are the central problem for people with impairments Social Construction: DISABILITY AND MATERIALIST EMBODIMENT Mike Clear and Brendan Gleeson JOURNAL OF AUSTRALIAN POLITICAL ECONOMY No 49 http://www.jape.org/jape49_2.pdf

Social Model Minority (Political/Cultural/Affirmation) inappropriate and discriminatory social attitudes, sociopolitical structures - cultural phenomena are the central problem for disabled people political based used to counter discrimination and advocate for civil rights disABILITY identity / Pride / Culture

Social Model Independent Living Model (ILM) states that current sociopolitical structures produce access barriers for and dependency in impaired people resulting in disability is based on a consumer driven movement that fosters autonomy, self-help and the removal of societal barriers and disincentives

Social Model -- Human Variation Universal Design re-think= The built environment; economic, social, cultural, and political entities including organizations that provide employment, education, health care, transportation, communication, and the full range of public services. Human Variation:

Social Model Postmodern Theory sees disability as constructed via discursive practices (Talk / write=create disability) perceives disability identity as fluid and its boundaries dependent on context and the dynamic interaction of other self-identities emphasizes a dialogic relation between impairment and disability (not an analytical privileging of one over the other)

"Through framing disability, through conceptualizing, categorizing, and counting disability, we create it.” Higgins, Paul. (1992) Pp. 6-7 Making Disability: Exploring the Social Transformation of Human Variation. Springfield, Il: Charles C. Thomas

Social Model Dismodern Theory -L. Davis sees imperfection as the norm

disability is restricted activity (caused by social barriers) 2. disability is a form of social oppression 3. disability is created by categorizing bodies/minds as normal or abnormal Postmodern: Foucault= socio-political construct; not practical; not understood by non-academics Postmodern: “As Foucault demonstrated, medical knowledge, its associated "clinical gaze" and the representation of illness always need to be seen in its socio-historical context. The understanding of this "provides a perspective which is able to show, as does the cross-cultural perspective offered by anthropology, that the conventions of western biomedicine are no more 'scientific' or 'objective' than medical systems in other cultures or in other times. This type of approach does not necessarily call into question the medical definitions of disease, but points out the limitations of biomedicine without due attention to more cultural approaches.” Beyond Biomedicine: Renegotiating the Sick Role for Postmodern Conditions; Susan McKay http://www.media-culture.org.au/0106/bio.html

Initially: Social model tries to breaks the bio-medical chain of causation: Impairment Disability Why was this strategically important to DRM (Disability Rights Movement)?

Unstated premises of SM: While the social model redefines “disability,” it stops short of questioning the status of “impairment” Unstated premises of SM: Impairment is a necessary condition for disability. Impairment is a “real entity,” a condition of the body, which remains the exclusive domain of medical interpretation and/or intervention.

Others: impairment should not be taken as simply a “natural state” Some disability studies work challenges whether impairment is just biological, an “objective, trans-historical, trans-cultural entity.” (Disability/Postmodernity, eds. Corker & Shakespeare). Carol Thomas: impairments are “shaped by the interaction of biological and social factors, and are bound up with processes of socio-cultural naming.” Thomas Laqueur, Making of the Modern Body (1987): “Scholars have only recently discovered that the human body itself has a history…. It has been lived differently, brought into being within widely dissimilar material cultures, subjected to various technologies and means of control….”

Don’t we all have negative experiences of our bodies? DS and feminist writers Jenny Morris: “There is a tendency within the social model to deny the … personal experience of physical and intellectual restrictions, of illness, of the fear of dying.” Liz Crow: “experiences of our bodies can be unpleasant or difficult.” Susan Wendell: “live with the suffering body, which that which cannot be notices without pain, and that which cannot be celebrated without ambivalence.”

Is everybody who’s “imperfect” impaired? Social model founder Vic Finkelstein “The prevailing view that it is personal impairments that disable us is reinforced every day by the media, medical forms, etc. In order to locate the problem in the disabling society it is necessary to break the I-D link. However, impairment = disability is a core value of the modern ‘body-perfect’ culture and extremely resistant to change…. “Ridiculous diets, surgical interventions, absurd clothing and endless exercises all aim at making the non-disabled body perfect. This ‘abstract perfection’ is located in our culture…and therein lies the true ‘ableness’. The ‘ableness’ of humanity is an abstraction, an ideal.”

Culture & the body Body image Body work Anorexia/bulimia example? “the body is becoming increasingly a phenomenon of options and choices.” Anorexia/bulimia example?

MENTAL ILLNESS Subjective, shifting, contested diagnoses? DSM IV (Diagnostic and Statistical Manual of Mental Disorders) “biomedical assumption that there are clear boundaries between diseases and between the sick and healthy.” Psychiatric survivors movement since 1970s. Argue that their differences are not helpfully categorized or treated as impairments. Insiders’ POV; narratives of living with bodily/mental difference. Sick or criminal? Problems of deinstitutionalization. Newly invented disabilities (and treatments) Social anxiety disorder

What Is Mental Health? The state of "mental health" is difficult to define. U.S. Surgeon General’s definition of mental health: “the state of successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity”

Models – Summary Problem is the Individual Problem is Society Moral Personal Tragedy Medical Problem is Society Social

WHY CARE? How Disability Is Defined Determines What Is Measured = Allocation Of Resources

TWO EXAMPLES World Bank Oregon In 1989, passed legislation rationing health care to all state residents who were on Medicaid. World Bank: The Lancet in July, 1993, reported that the World Bank (WB) is now moving into first place as the global agency most influencing health policy. Since 1980 the World Bank’s involvement in heath had faced bitter criticism but this could not change its basic approach towards the health sector. WB and International Monetary Fund (IMF) had espoused Structural Adjustment Programme (SAP) with debt for the third world countries. In order to meet the requirements of debt, SAP dictates a number of measures in policy decisions in these countries. It directs cuts in public spending on health, education and other social services. Removal of subsidies and lifting of price controls on food and other basic commodities. Amitava Guha http://www.healthlibrary.com/reading/rdb/april99/health.htm Oregon: “…developed prioritized lists of condition-and-treatment pairs and then ranked these in three basic categories: essential (treatments that prevent death, such as appendectomy for appendicitis), very important (treatments for nonfatal conditions that would return a patient to a previous state of health, such as hip replacements or cornea transplants), and valuable to certain individuals (treatments for fatal or nonfatal conditions that would not extend or improve the quality of life, such as treatment for the end stages of cancer or AIDS). Condition and-treatment pairs were then ranked according to importance within each of these three basic categories.” Had to abandon strict cost-effectiveness calculations produced rankings that were counter-intuitive and seemingly absurd In the original list, for instance, the insertion of dental caps was ranked higher than surgery for ectopic pregnancy (a condition which is fatal without surgery). The commission developed prioritized lists of condition-and-treatment pairs and then ranked these in three basic categories: essential (treatments that prevent death, such as appendectomy for appendicitis), very important (treatments for nonfatal conditions that would return a patient to a previous state of health, such as hip replacements or cornea transplants), and valuable to certain individuals (treatments for fatal or nonfatal conditions that would not extend or improve the quality of life, such as treatment for the end stages of cancer or AIDS). Condition and-treatment pairs were then ranked according to importance within each of these three basic categories. Working with budget imperatives, the Oregon state legislature established cutoff lines on the ranked list below which no services would be covered. While this plan has followed John Stuart Mill's dictum of "the greatest good for the greatest number" by allowing Oregon to provide health care access to a larger percentage of citizens, it has raised a number of other questions: If we are to ration health care based on whether it improves quality of life rather than on biologic outcome, what method do we use to evaluate that? Do treatment prioritizations based on quality of life disadvantage the disabled? Are refusals to provide medical care based on cost-effective rankings ethical? Health Care Reform in the States by Susan Moke http://www.indiana.edu/~rcapub/v20n1/p16.html

Summary Introduced Basic Concepts Introduced Four Models of Disability (Disability / Impairment) Introduced Four Models of Disability ( Social Model; Moral Model; Medical Model; Personal Tragedy Model)