Tuesday, January 4, 2011

CULTURE & REHABILITATION


When starting to explore the dimensions of the topic, its breadth was almost overwhelming. In creating some structure to the topic, the starting point was to define the terms, the characteristics/ components of culture and the values underpinning rehabilitation. From an analysis of the terms, the potential relationships can be identified and the impacts on rehabilitation practice and policy can be highlighted.

In defining the term culture a point of clarification arose. Is culture being defined in terms of the wider community or in terms of the disability community? Culture needs to be considered in both contexts, as both contexts impact on rehabilitation practice and policy.

"In the analytical sense, culture is the total body of broadly shared tradition transmitted from generation to generation, specifically the norms, values and standards by which people act and it includes the ways distinctive in each society of ordering the world and rendering it intelligible...It provides us with a definition of reality."1

"The arbitrariness of cultural elements does not mean that they are without rhyme or reason, only that the meanings are humanly imposed, vary from society to society, and are not absolute or natural. "2

In looking in more detail at culture, Beatson has defined five faces of culture. These are:
  • "Knowledge - the cognitive component of culture.
  • Ethical or moral domain of social norms, roles and values
  • Lifestyle
  • Icons and rituals
  • Language"3
These five faces of culture assist in defining the purpose of culture. Banja has identified three purposes of culture. Banja has taken these purposes and started to relate their impact in terms of the impact on rehabilitation.

"First, they determine are social relationships such as the way professionals relate to their clients; their nature of gender relationships; and family, vocational and community relationships.

Second, they assist individuals to explain life or reality. In medicine, this is very important because a significant dimension of life and reality is one's health, illness and disability. Cultural beliefs affect how professionals, as well as health care consumers, in a given society interpret

A third function, of cultural beliefs and practice is that they differentiate one social group from another."

The WHO classification on Impairment and Functional Capacity has long recognized the importance of environment in impacting on the rehabilitation process.

Implicit in the acceptance by The WHO of environmental factors has been the acknowledgment of the cultural context in which a person operates. The implicitness of this relationship has often meant that rehabilitation practitioners and policy makers have not been explicit regarding the cultural context of both their practice and policy. Further, this implicitness is particularly important and may help explain the difficulties in defining community participation. " The lack of appreciation for cultural variability is in part structured by Western cultural blinders."4

"Perceptions of and attitudes towards disability are subject to cultural interpretations which can and do depend upon values, contexts, socio-historical time, and perspectives or status of observers. Disability and its definition, that is the social construct of disability varies from society to society and from time to time.

While the WHO definitions provide a world wide accepted standard, what is disability in one society may or may not be a disability in another, even though virtually every society recognizes disability of some sort. "5

The 1980s International Decade of Disabled and the Asia Pacific Decade of the Disabled helped focus attention within the rehabilitation process of the importance not only of a person's wider cultural context but also the importance and significance of the disability culture.

"One of the major contributions of anthropology to disability studies has been to confirm that disability is a cultural category rather than a biomedical "fact" grounded in functional characteristics."6

"In contrast to its biomedical, the sociopolitical definition of disability connects people with the broadest range of disabilities to each other by locating disability in the interaction of the person within her or his environment, rather than solely within the individual."7

When looking at the relationship between the culture of the wider community and the disability culture, it is realistic to describe the disability culture as a "subculture which shares many elements from the larger culture but which also contains cultural elements that are distinguishable from the larger culture. People with disabilities do have some distinct norms, values, and symbols; there are no distinct language, although there are elements of a jargon...Unlike the culture of a society, this type of cultural system is not conservative (in the sense of conserving the social order) but is rather potentially disruptive, it is the culture of people who do not accept the legitimacy of the existing social order."8

Thus the disability culture has as an explicit construct, the rights of people with disabilities to equal opportunities. This perspective has important ramifications for the rehabilitation process.

The last of terms to define is rehabilitation.

The UN Standard Rules define rehabilitation as "a process aimed at enabling a person with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functioning levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore functions, or compensate for the loss or absence of a functional or functional limitation."9

Rehabilitation is a unique personal experience. Rehabilitation is about disabled people living a new changed life as a result of a disability and the impact that has their dreams and hopes for the future. Rehabilitation is about enabling a person to engage in their world in a meaningful way. This is the essence of rehabilitation irrespective of culture. However the content of the role of rehabilitation is culturally determined.

No one should presuppose where a person is at. Because the experience is unique and the dreams and hopes are unique to that individual, any interaction with people needs to take cognizance of that fact.

Rehabilitation is usually not solely based around the individual but often encompasses a personal support network. Often the person is afraid of the reaction of a partner or family member to their rehabilitation. The extent of the involvement of the family is often determined by a person's cultural context.

Responsibilities and expectations exist for both the person and their personal support network and providers. Rehabilitation aims to assist a person to develop their own resources through the provision of the below mentioned skills. Rehabilitation and its services can have a significant impact on a person's attitude to their changed life.

To assist the person take responsibility for their rehabilitation, service providers have a crucial role in facilitating a disabled person's acquisition of the below mentioned SKILLS
  • Staying power
  • Knowledge
  • Information
  • Learning to change
  • Love yourself
  • Support
  • Sense of humor
Implicit in this model is the underlying value structure of rehabilitation. Values and Value Structure in Rehabilitation10

Altruism:
  • Individual dignity
  • Individual worth
  • Self actualization process
Choice:
  • Community participation
  • Integration
  • Least restrictive environment
  • Mainstreaming normalization
Empowerment:
  • Independence
  • Self-control
  • Self-determination
Equality and Individualism:
  • Autonomy
  • Freedom
  • Responsibility
  • Self-reliance
One statement in Howard Rusk's book stands out for me and reinforces the interrelationship between rehabilitation and culture. "To believe in rehabilitation is to believe in humanity." 11 To believe in humanity is to accept the cultural diversity that exists within society.

In looking at the relationship between culture, both at a societal and disability level and rehabilitation many facets can be explored. However I want to just examine a few. These include: Language
  • Relationships
  • The rehabilitation tools
  • Rehabilitation services
Language
"Language is a powerful instrument. How something is called has important implications for the way it is spoken about and how it is handled ...Cultural sensitivity for the differences in use of language use is important for a correct understanding of a phenomenon. In work with people of different cultural backgrounds, a different cultural content of the phenomenon "disability" will be communicated. Such cultural content has an impact on the way messages are communicated and on their understanding. "12 The importance of checking that everyone has the same understanding of the written or spoken word is often forgotten but very important to ensuring that all members of the team are working towards the same goals.

"The development of generic terminology is also culturally inspired. The tension between an emphasis on the individual differences on the one side and the societal control has historically had an influence on the attitudes and expectations towards persons with disabilities."13

Many of the words contained in the values of rehabilitation will be interpreted by different cultures and by the disability culture and the majority culture in different ways. One such word is independence.

Independence the term underpinning much of New Zealand's social policy can be viewed in a variety of ways..."Michael Oliver for example rejects a common professional definition of independence as "self care in looking after oneself." He proposes instead that we use the term independence as defined by the disabled, which is...the ability to be in control of and make decisions about one's life rather than doing things alone and without help. Hence it is a mind process not contingent upon a normal body. Independence here is about autonomy and self-determination, but it does not imply doing things by oneself. In fact, all of us are interdependent in families, whanau and community. We are not independent of the actions or care of others. Therefore being supported is a normal and valued human experience. "14

One of the factors that may have driven this view of independence is the attitude of the western society to the individual as opposed to the collective norms and collective self-definitions that are more evident in indigenous cultures.

In New Zealand, "the Maori self is regarded as a part of the whanau (family), not as independent.... If a Maori person has a sever disability, he or she may well remove themselves to "reduce" the burden to the whanau, as the whanau takes precedence over individuals. On the other hand, the whanau may well provide a great deal of care to the individual."15 This understanding of both self and responsibility need to be understood if effective policy and purchasing strategies are to be developed.

In looking at both rehabilitation practice and policy it is important to take cognizance of the fact that the very words we use may communicate different meanings and consequentially different expectations because of gender, race, age and culture.

Relationships
"Culture is extremely important because it will influence the content of a person's engagement with the world; but if culture distinguishes how we engage in the world, rehabilitation will universally address the form of that engagement, ie. It's physical, behavioral and/or cognitive manifestations. " 16 This statement shows the important relationship between culture and rehabilitation and the potential of complexity of the relationships that exist between the various individuals within the rehabilitation process.

"Culture is not just a rational system; it is emotionally powerful as well as cognitively encompassing. ...it determines gut level reactions."17 This is important given that rehabilitation begins in the mind ...people learn approved ways of being ill. Culture influences are beliefs about a range of factors - reaction to pain; cause of illness, our response to illness or disability eg " should individuals go to rehabilitation, have surgery, become resigned to their illness, do penance; or start a new life?"

People bring with them into the rehabilitation process a range of expectations and experiences, many of which are shaped by their culture. This is important for others involved in the rehabilitation process to accept and understand and appreciate those differences.

For example: "the professional assumes the person is going to be compliant, while they may be nodding out of respect while totally disagreeing with what has been said."18

This has implications for providers of rehabilitation. As Howard Rush states "Rehabilitation is one branch of medicine in which the patient has more power than the doctor in setting the limits and possibilities. The doctor can tell the patient what to do, but only the patient himself can decide how much he's going to do. In making these decisions, patients are constantly teaching us doctors about rehabilitation by proving that they can do more than we presumed possible."19

Howard Rusk in his book "A World to Care For" stated "With time our concept of rehabilitation has grown, and we realize it was not enough just to treat a man's physical needs. We worry about his emotional, social, educational and occupational needs as well. We had to treat the whole man. And we also had to teach his friends and family how to accept him and help him in his new condition."20 Further he wrote "If a patient came to me with a leg off and he was suffering from a deep emotional anxiety as a result of it, and I couldn't get him the proper attention for his emotional disturbance, I wouldn't be a good doctor. If rehabilitation is to ignore the emotional problems of the disabled, then I'll go back to internal medicine. "21

Another important relationship, which is often forgotten, is the role of the family especially where they may continue the rehabilitation. What are the respective expectations of duties and responsibilities, what is the cultural relationship view of disability and of a person with a disability...how is a person with a disability valued?

Some disabilities by their very nature can bring shame to not just to the individual but also to the family - TBI for some cultures is seen in that context. This may well have an impact on how the reactions and attitude of others in the rehabilitation process are perceived. Further there may be attempts to hide the extent of the brain injury. An understanding of culturally determined reactions to disability is important in effectively managing the rehabilitation process and for people with disabilities these aspects are often not considered.

Cultural differences are complicated by other factors for people with disabilities such as attitude towards males and females may well vary within society. . This difference is an additional complication especially for women with disabilities and has resulted in women having less access to opportunities. Equity of access may well be comprised by culture attitude not to disability but to gender. This has policy implications that have not been fully explored.

For children from different cultures they may have to cope with different cultural responses and expectations to their disabilities in the school and home environment.

This provides additional pressures for children as they attempt to make sense of their world. The whole area of the impacts of cultural on children with disabilities has received very little attention. How can policy and purchasing decisions be adequately made in this area without this knowledge?

Rehabilitation tools
In the "Cross Cultural Assessment of Functional Ability" states " culture and environment are known to influence performance of activities of daily living. Few functional assessments currently used in rehabilitation address the issues of cultural validity or relevance of the tools that are used for assessment purposes."22

They go on to state that the issue of cultural diversity is not only relevant between countries but also within countries. "This is an area of great concern, and interest, especially because cultural differences may act as a barrier to the provision of services, making it imperative that health practitioners learn how to deal with clients of different cultural backgrounds. "23

If the tools used to assess needs are not culturally sensitive, then how reliable are they outside of the cultural construct for which they were developed? Have these tools inadvertently created barriers of access to services?

In children the consideration of culture is important when making assessments. In assessing children it is important to take into " account what the child's culture considers normal behavior and appropriate interactions. One must question how to assess a child with a handicap without mistaking cultural differences for deficits simply because they deviate from majority values." These are important and very thought provoking questions, which have not been truly explored.

Which culture or sub culture should one be using to determine if one is in harmony with an individual's values in the example of the child who is striving to function in the culture of his peers but is guided by the culture of his/her family? "24

Rehabilitation Services
There is a saying that people with disabilities do therapy everyone else does art. The disability arts has challenged this approach. "Disability art may transcend its initial habilitative or rehabilitative origins: it provides a training ground from which professional, product oriented artists or crafts people may emerge."25 Secondly it has an important role in contributing to the cultural identity of people with disabilities.

Services may well need to be developed which transcend the therapeutic and if the aim is to promote equal access then who should fund - disability services or arts funding?

The cultural attitudes that exist within countries may bring with them different attitudes to and expectations from services. This may be having particular importance in promoting vocational and home based rehabilitation services. What are the expectations of people with disabilities and how does the immediate system see its role? These are important policy and ultimately purchasing decisions, which are often not recognized, and often service delivery models are based on a mono cultural perspective.

Conclusion
Cultural has a significant impact on the way the people view the world. Given the importance of attitude within rehabilitation it is important that if rehabilitation is to be truly holistic, individualistic and needs based then it must understand and reflect the persons cultural dimensions. Further this may mean that for many cultures the service delivery mechanisms may need to change to reflect a much more collective approach. This may well also have implications for policy and funding decisions.

Work in this area has begun but it needs to be coordinated so that account not only of how services are delivered but the various tools that are used to assess people's needs and determine their access to services.

Finally it may make us all examine the language we use to ensure that the words are being interpreted in the same way and a consensus is achieved. Without this various parties involved in the rehabilitation process will have differing expectations.

This provides an excellent challenge and opportunity, which the debate around the ICF model has helped facilitate.
  1. Culture and Disability: An Anthropological Point of view - Jessica Scheer Page 247
  2. Culture and disability op. Cit. P 248
  3. The Disability Revolution in NZ- A social Map. P Beatson , Massey University Press, 1996, P 391-2
  4. Culture and Disability op cit P249
  5. Disability and rehabilitation ain cross-cultural perspective: a view from New Zealand. Robert J Gregory, International Journal of Rehabilitation Research 17, 189-200 (1994).
  6. Culture and Disability op. cit. P 248
  7. Culture and Disability op. cit. P 251
  8. "Disability Culture of Cultural Consciousness" Sharon N Barnartt, Journal of Disability Policy Studies, Volume 7, Number 2, 1996. P 4 -5
  9. Standard Rules on the Equalization of Opportunities for persons with disabilities." United Nations 1994.
  10. Rebecca Cutis " Values and Values in Rehabilitation " Journal of Rehabilitation. January - March 1998, Page 44
  11. Rusk H op cit P 298
  12. From handicap to disability: language use and cultural meaning in the United States. Patrick J Devlieger Disability and Rehabilitation 1999, vol 21 , no 7, 346
  13. Devlieger op cit. P 349
  14. Disability, family, whanau and society K Ballard 1998 P 21
  15. Gregory RJ op cit P194
  16. Ethics, values and world culture: the impact on rehabilitation. J D. Banja Disability and rehabilitation 1996 vol 18 no. 6 P 283
  17. Disability culture or disability consciousness - Sharon N Barnartt - Journal of Disability Policy Studies- Vol 7, No 2 , 1996. P 3
  18. Ethics , values and rehabilitation op cit P 280
  19. H. Rusk "A World to Care For"
  20. H. Rusk op cit P
  21. H. Rusk op cit P
  22. "Cross-Cultural assessment of Functional ability" Livia C. Magalhaes; Anne G Fisher; Birgitta Bernaspang; John M Linacre, The Occupational Therapy Journal of Research; Volume 16, Number 1, 1996. P 45
  23. Livia C Magalheas et al op cit P 47
  24. Cultural considerations in the development of children with disabilities: implication for future work potential. Linda W Duncombe Work A journal of prevention, assessment and rehabilitation. Volume 9 1997 P 69
  25. Peter Beatson op cit P 436



    
    

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