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Disability OCT 4109

Week 1.

Disability as a social, cultural and political

phenomenon.

Important that you take responsibility for your own learning. Ask questions during lectures and labsAnswer questions during teaching sessionsDo the reading I don’t know what you don’t understand unless you let me knowWe are helping you to learn, enquire, and use clinical reasoning.

Contents.

• Welcome to unit• Definition of disability

and content of unit• Models and concepts

of disability• Difference and

diversity

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• http://www.youtube.com/watch?v=nwBzb7m2n64

• Mia’s story

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Definition..

• Disabilities can result in a person having a substantially reduced capacity for communication, social interaction, learning or mobility and a need for continuing support services in daily life.

• With the assistance of appropriate aids and services, the restrictions experienced by many people with a disability may be overcome.

• www.disability.wa.gov.au

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• The main categories of disability are physical, sensory, physiological and intellectual.

• A physical disability is the most common, followed by mental/behavioural and sensory. Many people with disabilities have multiple disabilities.

• Physical disabilities generally relate to disorders of the musculoskeletal, circulatory, respiratory and nervous systems.

• www.disability.wa.gov.au

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• Sensory disabilities involve impairments in hearing and vision.

• Mental/behavioural disorders include intellectual and developmental disabilities which relate to difficulties with thought processes, learning, communicating, remembering information and using it appropriately, making judgements and problem solving. They also include anxiety disorders, phobias or depression

• www.disability.wa.gov.au

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Definition and inclusions

• Disabled people do not enjoy the biological luxury of recovery.

• They are usually medically well.• Not equated with any degree of ‘suffering’ • Disability exists when ‘people experience

discrimination on the basis of perceived functional limitations’.

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Construct and language

• Developmental disabilities – language used in UK. • Definition – set of abilities and characteristics that

vary from the norm in the limitations they impose on independent participation and acceptance in society

• Developmental in sense that delays, disorders or impairments that exist within traditionally conceived developmental domains such as cognitive, communication, social , or motor abilities appear in the ‘developmental period’ characterised before 22 months of age.

• Low IQ is typically associated with DD (developmental disability). Odom et al

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Disability as a social constructClassifying difference

• Classification and clarification of deviations from the norm

• Including physical, cognitive and mental disabilities

• “Far from being mere differences of interpretation, these issues concern the way in which disabled people are perceived, the allocation of healthcare resources and, in some instances, survival itself.’ (p 17, Hammell 2006. )

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• “Increasing contact with social differences will likely bring both conflict and gradual recognition that ‘differences’ are part of the long-term social fabric of society.” p 10 Odom et al

• Developmental disabilities are handicaps when they create barriers to personal and social development of an individual within expectations, constraints, and supports available.

• As perceptions of social ‘difference’ shifts, so will perceptions of developmental disabilities.

Language and labelling

• People with disabilities when referring to an individual person; gives a focus on the person not the disability

• He has a cognitive disability (diagnosis).

• She has autism (or an autism diagnosis).

• She uses a wheelchair.• Disabled people is the

acceptable language in the social/political model referring to group/s.

• The handicapped or the disabled.

• He’s mentally retarded.• She’s autistic.• He’s Down’s. • She’s learning disabled.• He’s a quadriplegic• She’s a cripple.• She’s a dwarf/midget.

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Desirable language Undesirable language

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They are people, first.

• People do not suffer from a disability• They are Mums and Dads. . . Sons and

Daughters . . …Employees and Employers• Friends and Neighbours . . . Students and

Teachers. . …Leaders and Followers• Scientists, Doctors, Actors, Presidents,

and More• They are people.• They are people, first.

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International classification of functioning, disability and Health ICF

(WHO, 2001)

• Attempts to acknowledge that people interact with their environments, – Identifying ‘impairment’ (perceived problems

in body function or structure)– ‘Activity limitations’ (difficulties in executing a

task or action)– ‘Participation restrictions’ (problems in

functioning at the social level)

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ICF• ICF provides a common language and

framework for description of health and health related states, outcomes and determinants. The ICF emphasises health and functioning in society regardless of the reason for the individual’s impairments. The ICF focuses on person’s level of health rather than on disability.

• Important because diagnosis alone does not predict service needs, level of care, or functional outcomes

ICF – International classification of function

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ICF

• ICF considers personal factors that impact an individual’s ability to act and to participate and also considers environmental factors.

• These include physical contexts, social and cultural contexts (attitudes, values), economic contexts (social systems and services), political contexts (policies, rules) and legal contexts in which impairments are considered.

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• In ICF model, disability and functioning/participation are seen as the outcome of the interaction between health conditions (diseases, disorders and injuries) and contextual factors

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ICF and issues for disabled people

• ICF makes no capacity for coding the discriminatory dimensions of society, performance of governments or the effect of their policies.

• Explores environment only in how it impacts on individual lives.

• ICF fosters a view of disabled people as catalogues of deficits and deprivations father than as people with various abilities and resources.

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• No other group of minority people has been the focus of such in depth classification!

• Classification of individual differences, is seen as necessary for analysis of status, provision of health or community services or the implementation of policies to assure their rights. This would not be acceptable for other minorities including ethnic minorities, women or other.

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• Although many potential benefits are ascribed to the ICIDH and later to the ICF, the primary use of these classifications is for compiling statistics, filing and retrieving case records, (according to the specified categories), assessing deviations from ‘normality’ and determining eligibility for services and programmes.

• Clearly such tool ‘assist professionals and bureaucrats in their work, they do not have any inherent benefit for those being coded and classified” Hammel p25

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• It will be interesting to observe whether, and how, use of the ICF classification will actually shift the focus of policy makers and researchers from individuals to environments (physical, social, cultural, economic, political and legal) to enable the coding, classification and change both of social policies and the distribution of resources and opportunities within societies.

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• Disability writers see the ICF classifies disabled people not as different, but as – defective, – deviant, – sub normal, and – inferior. (Hammel p21)

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Historical models

• Why• Help new practitioners understand that

some of the individuals with whom they work will have experienced very different services to those on offer today.

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Models of disability

• religious/ moral• Individual /medical• social/inclusive

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Models

• Ideas inform and shape behaviour, and ideas about impairment, shape the response of individuals and societies to people who have various forms of impairment.

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Frameworks

• A model is a framework that is used to make sense of information, a model is both shaped by ideas and serves to shape ideas.

• A model may shape ideas so successfully that it is eventually regarded as the natural or ‘right’ way of thinking about an issue

• 3 models, all emerged at very different times, they are all evident today

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Moral/religious model

• Oldest and most pervasive framework• Embraced by most cultures and religions • Attributes impairment to the consequences

of possession by evil spirits, punishment for wrong doing, or committed sins by the individual or the parents.

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Consequences of the Moral/religious model

• The idea that impairment are deserved led to derision, ostracism, abuse, ridicule and pity.

• Pity underpins the concepts of charity and alms-giving

• ‘Moral obligation’ is action directed to help others ‘less fortunate than ourselves’

• Leads to people feeling shame, guilt,

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Consequences of the Moral/religious model

• Disabled people may be hidden from view.

• Historically lived in institutions, asylums. • Partially responsible for influencing and

justifying the widespread discrimination against disabled people.

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• Male dormitory at the Claremont hospital for the insane.

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Individual / medical model• Underpinned by rehabilitation professions• Belief that science can solve all problems• Sees disability as an individual deficit

amenable to ‘expert’ solutions.• Sees restriction of activity as a tragic

consequence of their impairment• Assumes that there is an optimal level of

human functioning to which all humans should aspire.

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Individual / medical model

• Treatments directed to enabling individuals to overcome functional deficits and appear as normal as possible.

• Talk of ‘blame’ or ‘non-compliance’ if disabled people fail to achieve the rehabilitation goals established by their therapists.

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Consequences of individual/medical model

• Disability theorists view attempts to normalise individuals as inherently repressive

• Challenge models in which powerful ‘experts’ determine treatment plans for powerless ‘patients’

• Rehabilitation is the process of enabling individuals to live with an impairment in the context of their environments.

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Social/political model

• Arose from the declaration “In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society .. Disability is therefore a particular form of social oppression”. British Union of Physically Impaired Against Segregation (UPIAS 1976 p 3-4)

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Social/political model • Distinguish impairments (perceived bodily

differences) and disability (the social experience of having an impairment)

• Social model – impairment refers to perceived abnormalities of the body/mind, disability refers to loss or limitations of opportunities to take part in normal community life on an equal level with others due to physical or social barriers.

• Therefore disability refers to something wrong with society, not with the person.

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Social/political model

• Disability is all things which impose restrictions on disabled people.

• Includes – individual prejudices, – institutional discrimination, – inaccessible public buildings, – unusable public transport systems, – segregated education, – excluding work arrangements.

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Social/political model; disability as oppression

• Unequal distribution of resources and power relations and opportunities to participate in everyday life.

• Studies of people with spinal injuries demonstrate dissatisfaction results for the social disadvantages such as confinement to residential institution, unemployment and reduced community access. – is support social model of disability.

• Environment includes economic, cultural, social. Legal and political

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Critiques of social/political model

• Model should act as a lens to sharpen one’s thinking, not as a set of blinkers to restrict ideas.

• Social model ignores impact of pain, fatigue, paralysis and reduced life expectancy.

• Although the medical model has ignored socio-cultural issues, it cannot simply be replaced by a socio-cultural model which ignores medicine.

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• Is the social/political model relevant in the majority of the world? i.e. in third world countries?

• Does the social/political model focus on the impairment rather that the person?

• Is the social/political model an urban model?

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Consequences of the social/political model.

• Had major global impact• Influence for social model is evident in

– international declarations and conventions, – national legislation, – global expansion of Community-Based

Rehabilitation programs, – growing number of Disability Studies university

programs– Push for inclusive education and – research literature.

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Rehabilitation and social/political model

• Rehabilitation can change the skills of people to increase their ability to functions in the pre existing environment

• In addition to teaching mobility skills , professionals must ensure that clients have somewhere they can go and something they can do.

• Acknowledging the social dimensions of disablement does not require that therapists neglect the individual physical or psychological issues of impairment.

• Instead it requires a more holistic focus

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• Requires therapists to expand their focus of their interventions from modifying individuals ( ie developing skills) – to also modifying environments (ie actively

lobbying for accessible transport), – and modifying attitudes

• Demands a level of commitment and engagement that supports social inclusion, and community education

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“Normalisation” and “Social Role Valorisation” (SRV)

• SRV formulated in 1983 by Wolf Wolfensberger out of ‘normalisation’

• Disability services were still emerging from the medical model and embracing the individual model

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Social role valorisation

• SRV is a description of how societally differentiated people are devalued, unvalued and often treated poorly

• Focus was to make people with disabilities more ‘normal’

• Helped staff to value people with disabilities

• SRV works against self-advocacy efforts

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SRV and normalisation• During 1970’s and 1980 accepted guiding

principle• Had tremendous positive impact on people

lives • Did much to eliminate

– deprivations from purposeful activities, – overcrowding, – lack of individualisation, – isolation from other people or ordinary places.

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• Significantly contributed to increases in • community residential alternatives, • development of community based

employment programs, • rise of self advocacy movement and• trend towards inclusive, integrated

educational opportunities. • Wolfe, Kregel and Wehman, 1996

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• Universal acceptance of normalisation led to misunderstandings, misapplication of principle

• Service has been paternalistic, • Wolfe, Kregel and Wehman, 1996

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SRV

• Kielhofner’s view of SRV – pressuring disabled persons to fit in by appearing and functioning as much like non-disabled persons as possible.

• Functions of ‘norms’ eg normal gait, normal hand writing, establish the professionals as the people with power.

• Fit with the medical/expert model

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Self determination• SRV Replaced by the consumer

empowerment movements;• Self determination - individuals ability to

express preferences and desires, to make decision, and to initiate actions based on those decision.

• Simply refers to choice• Persons sets goals for oneself the actively

engages in activities designed to achieve these goals.

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OT’s and disability today

• Difference and diversity (not deviance and normalisation)

• Person centred practice – Or client centred practice– Family centred practice

• Inclusion • Self advocacy

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Difference and diversity

• cultural diversity• Celebrate diversity

and individual differences

• Different ability

OT models54

CMOP

PEOP Model

occupation

Occupational performance

& participation

performance

Person

(intrinsic factors)

physiological

cognitive

spiritual

neurobehavioural

psychological

Social support

Social & economic support

Environment

(extrinsic factors)

Built environment

& technology

Natural environment

Wellbeing Quality of life

Culture & values

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Historical perspective in WA

• In Australia at the turn of the century before there were formal services for people with disabilities, it was left to families to care for their children with disabilities without assistance. Children with disabilities were viewed as ineducable, and parents were often advised to "put their children away and get on with their lives".

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Parent lead support groups

• 1940’s and 1950’s• Organisations such as Spastic Welfare

association and Slow Learning Children’s Group.

• Day care, school, therapies and residential facilities

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A shift to a training model

• 1964 a new separate State Government service the Mental Deficiency division

• Separated mental health and intellectual disability

• Children transferred from Claremont Mental Hospital to Pyrton in December 1966

• 1970 and 1980 focus on training and skills developments

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A policy framework

• 1981 the International Year of Disabled Persons raised the profile

• Commonwealth Disability Services Act (1986)• 1992 Disability discrimination Act• Authority for Intellectually Handicapped persons

(AIH) began in WA in 1986 charged with advancing the rights, responsibilities, dignity, development and community participation of people with intellectual disabilities in WA.

• Disability Services Commission in 1991

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• Information on www.disability.wa.gov.au• The history of services in WA reflects

history in world.

Summary

• Exams questions – models of disability, how they impact your clients, your beliefs and your services.

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References• Conway, M. (2008). Occupational therapy and inclusive design:

Principles and practice. Oxford: Blackwell Publishing.(Ch 2 & 3)• Disability Services Commission WA. www.disability.wa.gov.au

accessed 8.10.08• Hammell, K. (2006) Perspectives on disability and rehabilitation.

Sydney: Churchill Livingstone Elsevier.• Kielhofner, G. (2005). Rethinking disability and what to do about it:

disability studies and its implications for occupational therapy. The American Journal of Occupational Therapy, 59(5), 487-496.

• Masala, C., & Petretto, D. R. (2008). From disablement to enablement: conceptual models of disability in the 20th century. Disability and Rehabilitation, 30(17), 1233-1244.

• Social Role Valorisation http://www.socialrolevalorization.com/resource/resource.html accessed 8.10.08

• Wolfe, P., Kregel, J., & Wehman, P. (1996). Mental Retardation and Developmental Disabilities. In P. J. McLauchlin & P. Wehman (Eds.), (2nd ed.). Austin, Texas Pro-ed.