World Health & Population
The concept of disability has been examined from various cultural perspectives across the globe. The author explores how services and specific support networks have been provided to people with disabilities. Small-scale and large-scale societies have had to deal with unique challenges in monitoring services for the disabled, regardless of their geographical location; financial resources, accountability and adequate staffing are primary problems in delivery of services to the disabled. Prospects and challenges facing people with disabilities require policy reforms and advancements in special education in all countries.
In every culture, disability is perceived differently, and such perceptions shape the kind of services the disabled receive. Services in large-scale societies may, for example, include delivery of educational, counselling, health coverage and many other related services, while in small-scale societies, services may not be available. These smaller societies may partially or totally "excommunicate," or exclude, those with disabilities. One reason for the lack of services and excommunication is that these societies perceive people with disabilities negatively. For example, people with varying levels of disability are assumed cursed, or their forefathers must have committed unforgivable sins against the gods who guard society (Obiakor 2004).
Because of the way they are perceived, people with disabilities are denied education, counselling, health coverage and many other services. Even money from the United Nations Educational and Cultural Organization (UNESCO 2004) earmarked for helping these people is not used for that purpose in these small-scale societies.
This article is organized into three major components: characteristics of culture and disability, concepts across cultures and services available. The first section examines the concept of disability and culture. The second discusses the common concepts found across multiple cultures and the third discusses services available to the disabled.
Characteristics of Culture and Disability
Characteristics of disability, and interpretation of those characteristics, are dramatically influenced by the culture in which the disabled person resides; government bureaus responsible for overseeing programs for the disabled are affected by both the culture and the handicapping condition. Labelling people with disabilities imposes severe limits on them from a cultural, social and economic perspective; this limitation isolates them from the culture and the workplace.
Culture can be seen as "tradition;" a written or oral method of passing cultural heritage from one generation to another. The development of genetic theory viewed culture in a traditional sense as a "kind of gene pool" exiting at the level of social symbolism and meaning rather than biology, and with ideation rather than material existence (Kroeber cited in Banks and Banks 2001).
Prior to the twentieth century, the term culture was used by elite and powerful groups to reinforce percieved limitations of others and their related cultures to maintain a status quo. People who were knowledgeable in history, literature and fine arts were said to possess culture (Gollnick and Chinn 1998); those who did not possess this knowledge were viewed as lacking in culture.
Early in the 1900s, this view of culture was seen as narrow, biased and highly suspect. At this time, culture was defined and viewed differently from previous perspectives. According to Erickson (in Banks and Banks 2001), culture can be seen as "cultivation." This implies a distinction between culture and nature. For example, cultivating the soil leads to having fewer weeds than leaving the soil in its natural state; one needs to know that the distinction between what is considered a weed and what is considered a plant is cultural.
Bourdieu (1977) and Barth (1989) saw culture as a "social process"; their works emphasized the diversity emanating from the richness of individual cultural knowledge. Culture, as a social process from the perspective of Bourdieu and Barth, emphasized three points: (1) there is a systematic process in the allocation of power; (2) a social conflict uses both tradition and conflict to systematically generate a new order of behaviour within and outside that culture; and (3) human interactions, agreement and conflict are cultural tools a culture may use to realize a new order or restructure an older one.
Culture can be seen as a construction. Culture constructs us, and we in turn construct it. Cultural construction implies that all thoughts, feelings and human activity are not natural, but the result of historical experiences that become an integral part of culture. Comparing small-scale (agrarian) with large-scale (industrialized) societies, culture is seen to be different across the globe. These differences emphasize the way and manner people with disabilities are, and have been, perceived and treated.
Blue jeans, popular music, cowboy boots and popular clothing are regarded as diverse examples of artifacts of a large-scale culture. These examples could be valued positively in the large-scale society; however, a small-scale one, those same examples would be regarded as without value.
The concept of culture has many connotations in contemporary use. If used metaphorically, culture may mean an attitude, a fashion, a behaviour or a way of doing things. It is common for a new design of clothing to be marketed in a way that allows the wearer to dress in a trendy style and to express cultural pride (Fashion Trends 2007). In South Africa in 1994, the government viewed popular trends as counter to their interpretation of pride; they attempted to ban Zulus from carrying spears, shields and machetes in political rallies (Yanis 1994). The Zulus responded that they should be allowed to carry the items because they were "cultural" tools. The Biafran Igbos use war dance as an important function of their culture; this exhibition of Igbos cultural heritage was seen negatively and interpreted to mean the Igbos were waging wars against neighbouring countries. It was not until the Igbos' cultural pride and exhibitions had been explained that an understanding between their culture and the government was reached.
Today, the academic world and the mass media are full of stories with reference to "youth culture," "political culture" and "organizational culture." The term culture has become so trendy that it is used as a substitute for more specific words. Most cultural anthropologists would define culture as a total way of life for a society, its traditions, habits or beliefs (LaGuardia and Guth 2003). Specifically, Goodenough (1987: 21) sees culture as "a way of perceiving, believing, evaluating, and behaving." His views of culture provide a blueprint for examining how individuals may think, feel and behave within a society. LeVine (1984:9-10) sees culture as "...a shared organization of ideas that includes the intellectual, moral and aesthetic standards prevalent in a community and meanings of community actions."
Culture denotes an identifiable pattern of behaviour that people exhibit in response to diverse phenomena in their environment, where a specific meaning is often attached to individual and group encounters. People create meaning from their interactions with their environment; these meanings and interpretations about man, nature and life give rise to a philosophy about that society. It is from this philosophy that individuals establish a reference point from which to judge the actions, or non-actions, of a society. A culture is learned and can vary over time. Language is a key feature differentiating it from other cultures and it, too, varies over time.
There are difficulties in determining a definition of disability applicable to all cultures. As a culture varies over time, the definition of disability that culture uses changes over time as well.
The World Health Organization (1990: 96) defines disability as
an impairment or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfillment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual.
This definition draws attention to three terms: impairment, disability and handicap; the terms are often used interchangeably, resulting in confusion between - disability and impairment and between disability and handicap
During the 1970s, organizations representing people with disabilities and professionals in the field of disability reacted strongly against the terminology of the time (Smith 2007). The terms disability and handicap were often used in an unclear and confusing way, giving poor guidance for policy making and those providing service. The terminology reflected a medical and diagnostic approach that ignored the imperfections and deficiencies of the wider society.
In 1990 and then in 2000, The World Health Organization (WHO) adopted an international classification of impairments, disabilities and handicaps; this classification system suggested a more precise approach to defining disabilities from an international perspective. The International Classification of Impairments, Disabilities, and Handicaps (Bickenbach et al. 1999) differentiated between the three conditions. The system has been used in areas such as rehabilitation, education, statistics, policy, legislation, demography, sociology, economics and anthropology.
A Collective View of Disability and Culture
Disability and culture are central to determining the position or status the individual is given in a specific society. Someone whose disability conforms to social expectations is frequently rewarded for that behaviour; the culture tends to accept those who are willing to conform to given values, standards of behaviour and ethical concerns. Cultural understanding is also shaped by the meanings attached to various behaviours; through social and economic organization of a given society, or other internal and external cultural dynamics, a culture imposes standards upon all citizens. Murphy (1990) indicated that disability has been defined by society and is given meaning by a culture; therefore, there are various cultural perspectives of what disability is and how disability in people is perceived and treated.
From the cultural viewpoint, large- and small-scale societies perceive disability differently. In small-scale societies, close interactions between individual members are the norm; each individual may have extended and multi-stranded relationships with other members of that society (Scheer and Groce 1988). Individuals may interact in the course of economic production, during leisure time, or while participating in the arts or ceremonies. The social identity in these small-scale societies is based on family clan and other characteristics and not on the individual's physical characteristics.
Eskay (2002: 69) maintained, "The cultural perceptions of special education administrators in developed and non developed countries," which supported the work of Scheer and Groce. Similar research was conducted by Obiakor (2004) regarding the present perception of people with disabilities in Africa. Obiakor agreed with the findings presented by Scheer and Groce (1988) and Eskay (2002) concerning the cultural perceptions and treatment of people with disabilities in small-scale societies. In his research on the reasons for negative perceptions on people with disabilities in Nigeria, Obiakor (2004: 59) found that people with disabilities did not meet certain societal objectives. These objectives were important reasons for such negative perceptions in most small-scale societies, such as Nigeria. The objectives discovered are: (a) to develop the latent physical skills; (b) to inculcate respect for elders and those in a position of authority; (c) to develop intellectual skills; (d) to develop character; (e) to acquire specific vocational training and develop a healthy attitude towards honest labour; and (f) to understand, appreciate and promote cultural heritage of the community at large.
Conceptual Concepts across Cultures
As we grow in our knowledge of the dynamics surrounding the concepts of culture and disability, we begin to realize that individual perceptions and language play a vital role in our understanding of who we are as a people and as a culture. According to Beatrice Wright (1960: 346), "language is not merely an instrument for voicing ideas but...it also plays a role in shaping ideas by guiding the experience of those who use it." Scheer and Groce (1988) point out that when different cultures use positive language to describe individuals with disabilities, these individuals end up integrating well into the society.
Across cultures, the human body was universally recognized as having a purpose, a function and a value that aided in the survival and advancement of a given society. The purpose and the value placed upon the body were derived through a number of factors (i.e., industrialization, social status or gender). Although the body was capable of having multiple purposes and varying degrees of value, it was perceived as functioning as a complete whole, a oneness within itself. The whole body was perceived as being incomplete if one aspect of it was amiss. The concept of "spreading" was applicable to various levels of disability and in various contexts (physical, social or events) across different cultures. For example, if a woman was incapable of walking, she was also perceived as being incapable of having children. If a blind person could not see, it was sometimes assumed that he could not hear, though there was no connection. The ethnographic essays in Whyte and Ingstad (1998) provide three different functional concepts of the body: a symbol of physical beauty, a storehouse for the soul and a medium for action.
When cultures used the body as an instrument or outward sign of physical beauty, individuals within that society were seen as focusing their time, energy and efforts to conform to that standard. They were categorized as conforming or not conforming to that image. Therefore, it would be expected that individuals in key positions representing a particular culture would be considered beautiful and able-bodied. For instance, politicians, entertainers and athletes in the United States are generally considered beautiful and able-bodied. Understandably then, individuals who did not conform, either intentionally or unintentionally, to this physical image of beauty were shunned and/or rejected by the larger society. The disabled, individually and as a group, contravened all the values of youth, virility, physicality and physical beauty that most Americans cherished. The disabled were seen as subverters of the American ideal (Murphy 1990).
In the Punan Bah culture of Central Borneo, the body played a different role from that of physical beauty exemplified in American society. For the Punan Bah, the body was a storehouse for the soul. Punan Bah society emphasized and valued the soul(s) of their people, as opposed to the body, which stored the soul. Thus when the body was not normal, due to physical impairments such as blindness, deafness, or motor disability (e.g., limping), the individual was still considered human and not held responsible for the condition. Unlike American cultures, where the disabled tend to be shunned, in Punan Bah culture the impaired were embedded in society. They were expected to partake in all social activities, daily household chores and work activities, to the extent of their ability. For the Punan Bah, the issue was not with the physical but the spirit, which had taken hold of the body (Nicolaisen 1995).
For individuals not born with a disability, the process of coming to terms with its impact on the body involved a huge psychological and physical re-adjustment. Conceived as a medium for action, when the body was no longer able to perform the functions or the roles it had in the past, life ceased to exist as the person knew it. What once was a form of self-identity (roles and responsibilities conducted by the body) now became subordinate to the disability. Research from Monks and Frankenberg (1995) in the United Kingdom recognized the body as functioning in three different and integrated modes: incarnate, corporeal and somatic. It was impossible to impact one mode of the body without intruding upon the ability or the function of the other two. The incarnate body encompassed a notion of a historical and actively experienced and experiencing body, in the phenomenological sense of being in the world. The corporeal (or, loosely, physical) body referred to a bounded biological entity, while the somatic body was one defined by medical technologies and was usually fragmented (Frankenberg 1990). According to Monks and Frankenberg's research on the three modes, the following describes what the most newly impaired individual was likely to experience:
The body - its corporeal or physical aspect - was no longer an efficient and reliable instrument. It seemed to set its own agenda and have its own requirements, which competed with and inconvenienced preferred activities. In that the physical body provided means through which the self, as incarnate body, performed its social roles, these too had to be re-negotiated. (Monks and Frankenberg 1995: 111)
Identities and stigmas across different cultures were universally imposed upon the disabled by able-bodied individuals. It appears, based on the research conducted by Whyte and Ingstad (1998) that the values held by society would ultimately determine how disabled people would feel about themselves and their disability. Unfortunately, there was no middle ground: either disabled people were stigmatized or they were fully accepted into the daily activities of the society.
According to Murphy (1995), in the United States, regardless of what physically challenged people may think of themselves, they are given a negative identity by society, and much of their social life is a struggle against this imposed image. Murphy found that if people were stigmatized, the disability was considered their primary identity, while previous jobs, roles or activities were perceived as secondary or of little importance by the able-bodied. Cultures that stigmatize individuals with disabilities create an environment that fosters a preoccupation with the disability. As a result of this stigmatization, individuals with disabilities are often cast into the same lot and social status as criminals and certain minority groups; all are seen as outsiders, deviants from social norms. One's identity as a disabled person becomes paramount in one's own mind, and the disability is traditionally seen by that society as a result of one's actions. Furthermore, other people's reactions to the handicapped person are overwhelmed by the flaw (Murphy 1995). Those reactions feed into the disabled person's insecurities, thus creating a cycle of insecurity, stigmatization and identity disassociation. In the United States, people who are physically challenged carry the stigma that bad things happen only to bad people; physical challenges were looked upon as something that did not happen to respectable people.
The stigmatization of disabilities was also seen in the cultures of Japan and Uganda. In those countries, an aura of contamination was believed to surround the disabled person and become attached to other family members. In Uganda, this aura of contamination caused the disabled persons to become outsiders or outcasts, often having to fend for themselves for survival. The stigma was believed to linger even after death (Talle 1995).
Conversely, cultures that avoided stigmatizing the disabled perceived their abilities and roles differently. For example, the Maasai of Kenya did not stigmatize, regardless of the extent of the disability. According to research by Aud Talle (1995), physically challenged persons were expected and encouraged to marry, become parents and participate in all communal activities to the best of their abilities. For the Songye of Zaire, congenital deviations in the body could induce a higher, lower or undetermined status in comparison with able-bodied people. Therefore, not all deviation was stigmatized, and not all people with disabilities were marginalized because of their disability.
Research conducted by Frank Bruun (1995) on the disabled person in Nicaragua showed how disabled war veterans were given a positive identity for their heroic efforts in serving in their country. During the war, disabled individuals were regarded in a positive light and given preferential treatment compared with individuals who were disabled by other means (e.g., congenital or through farming accidents). Although many soldiers were unable to fulfill their former roles (through work or in social events), the identity the government conveyed on them often resulted in a new status that was higher than their previous one.
Disabled people are as diverse as the rest of the population, both in terms of personalities and impairments, and grouping them together under the label "disability" encouraged a false homogeneity in the way they were perceived (Lewis 1995). The process of labelling presupposed a certain familiarity with the contents under the label, and it provided a method for categorization.
Research conducted by Scheer and Groce (1988) found that the process of labelling was displayed more often in complex societies than in small-scale ones. In smaller societies, during the eighteenth and nineteenth centuries regular face-to-face contact between community members was the process for communicating and interacting. Individuals were related and connected to each other in diffuse social roles and contexts. In such situations, a single personal characteristic, such as a physical disability, was not generalized to define the person's social identity. On the other hand, in complex societies, social relationships and contexts were more impersonal and task specific, and individuals were not related to each other in varied contexts. Accordingly, visible physical characteristics were commonly used to classify and represent the individual's identity.
Whyte and Ingstad (1998) validated the research findings of Scheer and Groce and indicated that the label of "disability or handicap" was not a universal concept. A proportion of the developing cultures represented had no formal categorization or label of "disabled or impaired" for describing individuals with body parts that were not functioning to their fullest potential. More commonly, disabled people tended to be addressed and discussed in terms of the specific disability they suffered from. For example, a person missing an arm was often talked of and addressed as gacanley or gacamey, meaning "armless."
Turner (1967) coined the term liminality to describe the process of changing status that an individual with a newly acquired disability would experience. However, the term was used across different cultures and with slightly different interpretations. It was interesting to note the difference in perception of the liminality phase between the able-bodied and the disabled. As liminal people, the disabled comforted each other as whole individuals, not separated by social distinctions, and often exhibited a level of comfort not displayed in relationships between the able-bodied. This lack of clarity on identity and social roles often caused able-bodied individuals to resolve their indeterminacy by segregating or avoiding liminal people (Murphy 1995).
In an effort to understand disability as a social deviancy, Murphy et al. (1988) used the framework of the liminality concept. According to Murphy's research, the life histories of people with disabilities were seen as arrested and dramatized in a "rite of passage" frozen in its liminal stage. Liminality, a concept closely related to rites of passage, had three phases: isolation and instruction of the initiate, ritual emergence and reintegration into society in the new role. During the transitional phase from isolation to emergence, the person was said to be in a liminal state, literally, at the threshold - a kind of social limbo in which the impaired person was left standing outside the formal social system. Thus for a newly impaired individual, his or her state of being was clouded and indeterminate, falling ambiguously between sickness and wellness, living and death, participation and exclusion (Murphy 1995).
Monks and Frankenberg's usage in the United Kingdom, on the other hand, referred to liminal phases of an expressive quality within the course of disablement or chronic sickness. It provided a framework for comparison that highlighted the procedural nature of sickness and incorporated the personal endeavour as well as social constraint (Monks and Frankenberg 1995). In their research findings on multiple sclerosis (MS), they used "liminal" to describe a period of hospital admission or other seclusion from previous routines. This seclusion from life or the daily routine was often sparked by perceived changes in the physical body of a person with MS.
The concept of liminality varied even more when used in small-scale societies in comparison with complex societies. For disabled children in the Songye culture, their condition was considered liminal, not their personhood. For the Songye, the issue was not the visible disability, but a solution for the disability. Thus a person with a disability was seen not as abnormal, marginal or deviant, but as having potential and with a right to development (Devlieger 1995).
Liminality within the Punan Bah culture, similar to Songye, had nothing to do with disability, but rather with either kinship or personhood. Failure to marry or have children placed a person in a liminal state, where they were neither child nor fully adult, but an in-between person, a child-woman or child-man (Nicolaisen 1995).
The concept of personhood can be categorized into three different dimensions or into three different characteristics. Personhood, according to Whyte and Ingstad (1995) was characterized as something an individual could deny another person, similar to individuality, respect or livelihood. In other contexts, Gollnick and Chinn (1998) described personhood as having a cultural dimension that was seen as central to the cultural understanding of disability and was characterized as a phenomenon capable of being shaped.
As with previous concepts discussed in the context of multiple cultures, personhood also took on different connotations. It is important to note the fine distinction between the connotations of personhood in small-scale societies and large, complex ones. In small-scale societies an individual's personhood was directly connected to his or her social function, the individual ability to contribute to day-to-day activities in the society, whereas in complex societies, an individual's personhood was directly linked to the appearance of his or her physical body and social interactions.
In the Punan Bah culture, personhood was not determined by an individual's physical or mental conditions, and individuals were not denied personhood if they had physical or mental disabilities. However, a distinction was made between non-human and human individuals, and between non-persons and persons. At birth every individual was defined as non-human. Human status was given to individuals only after they reached the age of at least 6 months, when they were designated as a person or non-person. This designation was based on the legitimacy of their birth. According to Nicolaisen (1995), the concept of personhood was described as the fulfillment of a socially significant career, of which parenthood was the alpha and the omega, the beginning and the end. Individuals were denied full personhood if they failed to marry or produce offspring.
Similar to Punan Ban culture, the Hubeer and Somali did not define person or personhood by physical ability (Nicolaisen 1995). The concept of person was never a given, never completed, but rather represented by an array of continuously shifting influences that grew with the accumulation of experience and age. The Hubeers' notion of personhood appears to have had some very marked implications for their attitudes toward deviance in general and for some types of disabilities in particular. Although personal deviance was to some extent supported by the system rather than condemned by it, other forms of disability were not supported by the system, especially when such disability was assumed to be a society course.
In the United States and the United Kingdom, personhood was closely linked to the physical body. Therefore, the able-bodied denied personhood to individuals with physical disabilities. This denial took the forms of avoidance, attributing auras of contamination or devaluation. Disabled individuals, who internalized this denial of personhood, often participated in self-devaluation. In accordance with the ills of contamination, the disabled in America were seen to withdraw into themselves because of their own sense of loss and inadequacy, an impulse that conspired with their devaluation by society to push them further into isolation (Murphy 1995).
The Impact of Recognition on Disability
The theme of recognition was identified in both small- and large-scale societies in social interactions between the non-disabled and the disabled. The importance of this theme lies in its identification and in understanding its potential impact, positively or negatively, on the disabled.
In the analysis of the recognition theme, Gutzman and Taylor's (1994), and Choi, Nisbett, and Norenzayan (1999) views on multiculturalism was applied. In their research on multiculturalism, they wrote that:
...our identity is partly shaped by recognition or its absence, often by the misrecognition of others, and so a person or group of people can suffer real damage, real distortion, if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves (Taylor 1994: 25).
Taylor's work is significant in understanding the social interactions and relationships.
Although the concept of recognition existed across the different cultures, there was a distinction between large- and small-scale societies in their perception of the disabled. This distinction raises the question, "How is it that societies can recognize the same phenomenon but arrive at different conclusions about the phenomenon's value"? One could argue that the perceived value of a phenomenon, meaning its ability to aid the development of its society, will determine whether it is seen positively or negatively. Inherent in this claim is the argument that once a phenomenon changed its ability to aid society, its perceived value would also change. However, in looking at the plight of ex-convicts, minorities or the disabled, it becomes clear that there are other factors used in determining the value associated with a specific phenomenon. Despite their ability to add value or to further the development of their society, ex-convicts, minorities and the disabled in America are to a certain degree still perceived negatively.
One could also argue that the perceptions associated with a specific phenomenon are based on the beliefs, opinions and attitudes of the society. If this is a valid argument, the question then becomes, how are beliefs, opinions and attitudes created and changed? Are ingrained and societal attitudes, opinions and beliefs capable of being changed? How long would this change process take? In looking at the attempts of other groups (e.g., women and minorities) to change their identity and the recognition that they were receiving from the dominant society, it becomes a sobering reality that change may take longer than anticipated or desired.
Change in recognition was possible. Intimate interactions between the disabled and non-disabled individuals normally led to changes in the way that the latter perceived the former. Additional research indicated that close acquaintance can lead to judgment of the disabled person on the basis of personality characteristics rather than on their disability (Sentumbwe 1995). According to Murphy (1995), the greatest impediment to a person taking full part in their society was not their physical flaws, but rather the myths, fears and misunderstandings that society attached to them. What made the disabled particularly threatening was the psychological mechanisms of projection and identification through which people imputed their feelings, plans and motives to others and, in turn, incorporated others' feelings as their own (Murphy 1995). Further, when the non-disabled individuals recognized the disabled individuals, there was either a positive recognition or a negative recognition. Conversely, when the non-disabled individuals recognized the disabled negatively, they had a tendency to either treat them like children or regard them with utter disgust, disdain or fear (Murphy 1988; Monks and Frankenberg 1995; Scheer and Groce 1988). When the non-disabled individuals recognized the disabled individuals in a positive light, the disabled were treated as an integral part of the culture and society. They were given jobs or important roles in social functions. Research also showed that employment was important for persons with disabilities. It could provide economic security and independence and give them value and status as individuals. It helped with integration and acceptance by non-disabled individuals and, most importantly, it gave life a purpose (Boylan 1991). Thus, as long as physical disability is linked with shame, inferiority, disdain or fear, realistic acceptance of one's position and one's self is precluded from the life of the disabled (Wright 1960).
Services for the disabled could be considered as simple as identifying assistance for transportation to and from a specific store, or as complex as obtaining funding for a community heath project. Whether one is considering small-or large-scale societies, according to Jones & Reed (2006), Shukshin (2005), and Ferguson , Ferguson & Taylor (1992), there are many internal and external factors imposing barriers to adequate and appropriate services for the disabled.
A key internal factor that militates against small-scale societies receiving adequate service is that of funding; this has been linked to social perceptions (Gross et al. 1999: 188).
The amount of...funding for research on a disease is associated with the burden of the disease; however, different measures of the burden of disease may yield different conclusions about the appropriateness of disease-specific funding levels.
Whyte and Ingstad (1998) indicated that small-scale societies have a tendency to include and expect the disabled individual to participate in the day-to-day activities of that particular culture. Accepting the disabled person as fully functional within the total social structure of the society is a key element of the small-scale society; far too frequently, disabled individuals have limited economic resources available to them compared to the non-disabled within the culture.
Since the Year of the Disabled (1981) and the Decade for Disabled Persons (1983-1992), many questions have arisen about how to understand and deal with disability in a multicultural world. To what extent can programs developed in one place be successfully implemented elsewhere? What kinds of cultural and social differences matter and how can they be taken into account (World Health Forum 1998)?
In some small scale societies, creation of service and rehabilitation centres has met with resistance from both the citizens and local governments. According to Roth (1983), this resistance has resulted in diverting aid intended for opening rehabilitation centres to other projects. Local governments have not viewed these centres with the same sense of urgency as the disabled. Without appropriate aid, the disabled will continue to receive inadequate rehabilitation, education and job training (2005). Roth suggests that more human resources (e.g., special education teachers, experts in rehabilitation programs) be included in attempts to develop rehabilitation centres or programs, instead of providing financial resources (Roth 1983).
Policy makers in either small or large societies impact the daily lives of the disabled directly and indirectly (Roth 2005). Within small societies, the policy maker has greater interest in getting re-elected and providing service to more influential community leaders than in considering minority groups such as the disabled. As policy makers consider appropriation bills, budgets and funding within this small society, the disabled lack a powerful voice to express their position and needs. Being excluded from budgets and appropriations presents a never-ending cycle of neglect and a worsening of existing conditions. For the disabled, exclusion from appropriation bills will mean less educational resources and a decreased opportunity to be mainstreamed into the dominant society. Unfortunately, the few politicians who do understand the needs of the disabled carry very little political clout. After becoming frustrated, these individuals will often turn their attention to international sources for funding needed to erect rehabilitation centres.
The disabled in large-scale societies, with the help of international organizations such as the WHO, International Labor Organization (ILO) and other political/social organizations, have been successful in using the political organizations to gain recognition and integration into mainstream society (Shukshin 2005). Many large-scale societies are noted for their rapid recognition and integration of various interest groups; examples would be the United States, England and Wales, New Zealand, Finland, Norway and Sweden (Mazurek and Winzer 1994). Within these countries, the disabled enjoy the same rights and privileges availed to their able-bodied counterparts (see generally Disability Rights 2007). As a result of their efforts, a number of public policies and laws have been passed protecting the interests and rights of the disabled on issues of education and discriminatory practices found in the public and private sector.
With common and shared ideology that all disabled individuals should be recognized as equal citizens, treated with respect and enjoy the rights and privileges of the able-bodied, large-scale societies have begun to spread a common message and have used various resources to strengthen that message - the disabled should be treated with equity. Yet many small-scale societies have been quite slow in responding to this flow of information. With support from international organizations such as the WHO and ILO, large-scale societies had begun to sponsor rehabilitation programs in small-scale ones through funding, research monies, human resources, ideological transfer, equipment and maintenance. Due to language, culture and ideology barriers, however, rehabilitation centres have been less successful in some small-scale societies than in their large-scale counterparts. Traditional barriers have imposed a long history of neglect for much of the disabled population. Few small-scale communities have been able to create, fund or maintain rehabilitation centres successfully over a long period of time.
The DAM (Disability Awareness Missions 1997) project, although waiting funding, is an example of a rehabilitation initiative sponsored by a large-scale society and being implemented in a small-scale society. DAM is sponsored by Global Alliance for Africa, a nongovernmental organization (NGO) that, like all NGOs, is a nonprofit, nonsectarian and nonpartisan organization registered by the NGO Coordination Bureau. The DAM project is being implemented in the semi-arid region of northwest Kenya. DAM's target areas of disabilities include hearing impairment; visual, mental and physical handicaps; and epilepsy. The goal of DAM is to improve community education, health standards, socio-economic levels and the moral conditions of the disabled and their community throught the detection and prevention of mistreatment and development of a sustainable intervention. In addition to the need for funding, other strategies for ensuring that the program will not collapse after the large-scale representative leaves will need to be implemented (Roth 1983).
Services for the Disabled
There are many gains to be had by implementing services in both large and small societies. From many different perspectives, the gains are seen in quality of life for the disabled; much of the research has reflected benefits to the entire economy through an increased supply of human capital and an increase in productivity by disabled workers.
From various countries and many different governments, the disabled have been reported as generating a greater sense of belonging and an increased state of self-actualization when they were made to feel included in that society. Society is able to ensure this feeling of belonging by providing the appropriate resources (medical attention, employment opportunities, job training, education and adequate housing) to the disabled and their families (Batemann 1992). Appropriate job training and education for the disabled create a sense of financial freedom and independence; failure to provide the appropriate services could result in psychological complications or even death (Hardman and Wolf 1993). Additionally, the disabled and their families could be subjected to ignominy resulting in public embarrassment for both parties. A driving force for change within the educational services has been connected to federal, state and local government-enforced laws and policies.
Many political and social activists credit the US Civil Rights Movement (1955-1965) as a catalyst for a renewed interest in the rights of the disabled (Freedom House 2003). The issue at that time, which continued to 2007, was "whether any institution could provide a humane environment that allowed maximum personal freedom and self actualization for any individual" (Kaufman and Hallahan1992). These social and political activists believed that people with disabilities should be treated as "equal citizens" (Whyte and Ingstad 1995). When the National Commission on Excellence in Education published A Nation at Risk (1983), this report paved the way for additional governmental intervention into the field of education, which also included the disabled and all of the associated rights and benefits. For example, Public Law 94-142, part B of the Education of the Handicapped Act (1975), states that all disabled children in the United States are entitled to a free and appropriate public education. Provisions were also made to include services around employment and medical services and to public and private accommodations (e.g., hotels, theatres, restaurants, grocery stores).
In any dynamic society (large or small scale), all areas of human activity are undergoing tremendous changes. New ways of doing things and new problems emerge as old ones are resolved. Both large- and small-scale societies have made tremendous efforts to combat problems facing people with disabilities in their respective countries. Despite some of these efforts, small- scale societies compared with large- scale ones are in most cases still struggling to recognize and accept people with disabilities into the mainstream society. This is mostly due to the ingrained cultural beliefs of these people with disabilities.
Disability is defined, perceived and treated differently in every culture, and the definition, assignment of meanings and perception of disability account for the reason for legislation, legal mandates, service delivery and the kind of education given.
About the Author(s)
Dr. Michael Eskay, Professor, University of the Cumberlands, Williamsburg, KY
Dr. Michael Eskay, Professor, University of the Cumberlands, 7792 College Station Drive, Williamsburg, KY 40769 email: Michael.Eskay@ucumberlands.edu
Banks, J., & Banks, M. 2001. Multicultural education: Issues and perspectives. New York: John Wiley & Sons.
Barth, F. 1989. The analysis of culture in complex societies, Ethnos, 54 (3), 120-142
Bateman, B.D. 1992. Better IEP. Creswell: Otter Ink
Bickenbach, J. E., Chatterji, S., Badley, E.M., & Ustun, T. B. 1999. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science of Medicine, 48 (9), 1173-1187.
Bonomi, A. E., Boudreau, D.M., Fishman, P.A., Meenan, R.T., & Revicki, D.A. 2005). Is a family equal to the sum of its parts? Estimating family-level well-being for cost-effectiveness analysis. Quality of Life Research, 14 (4), 1127-1133.
Bourdieu, P. 1977. The economics of linquistic exchanges. Social Science Information, 16 (6), 645-668
Boylan, E. 1991. Women and disability. London, UK: Zed Books Ltd.
Bruun, F. J. 1995. Hero, beggar, or sports star: Negotiating the identity of the disabled person in Nicaragua. In B.Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 159-196).
Choi, I., Nisbett, R. E., & Norenzayan, A. 1999. Causal attribution across cultures: variation and universality. Psychological bulletin, 125(1), 47-63
Devlieger, P. 1995. Why disabled? The cultural misunderstanding of physical disability in an African society. In B. Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 57-94).
Disability awareness missions (DAM). 1997. Community based rehabilitation strategic plan. New York, NY:United Nations, Kenya.
Education for all Handicapped Children ACT (EHA). Pub. L. No. 94-142
Eskay, M. 2002. Cultural perceptions of special education administrators in Nigeria. Unpublished doctoral dissertation, Loyola University of Chicago, Chicago, IL
Ferguson, P.M., Ferguson, D.L., & Taylor, S.J. 1992. Interpreting disability: A qualitative reader. New York: Teachers College Press.
Fine, M., & Adrienne, A. 1988. Women with disabilities essays in psychology, culture and politics. Philadelphia, PA: Temple University Press.
Freedom House. 2003. Freedom in the world 2003: The annual survey of political rights and civil liberties. Lanham, MD: Rowman & Littlefield Publishers, Inc.
Chesson, R. A., & Sutherland, A.M. 1994. General practice and the provision of information and services For physically disabled people aged 16 to 65 years. British Journal of General Practice, 42(364), 473-476.
Fashion and trends. 2007. Retrieved March 29, 2007, from http://fashion-era.com/.era.com/ trends_2007a/index.htm
Gollnick, D., & Chinn, P. 1998. Multicultural education in a pluralistic society. New Jersey: Prentice -Hall, Inc.
Goodenough, W. 1987. Cooperation and change. New York: Russell Sage Foundation.
Gross, C. P., Anderson, G.F., & Powe, N.R. 1999. The relation between funding by the National Institutes Of Health and the burden of disease. The New England Journal of Medicine, 24 (340), 1881-1887.
Gutmann, A., & Taylor, C. 1994. Multiculturalism: Examining the politics of recognition. Princeton, NJ: Princeton University Press
Hallahan, D.P., & Kaufman, J.M. 1994.Toward a culture of disability in the aftermath of Deno and Dunn. The Journal of Special Education, 27(4), 496-508.
Hardman, M., & Wolf, B. 1993. Human exceptionality: Society, school and family. Boston, MA: Allyn & Bacon Inc.
Innes, G. 2007. Disability Rights. Retrieved on March 12, 2007 from http://www.hreoc.gov.au/disability_rights/ update/update.html
Jenkins, S. P., & Rigg, J.A. 2004. Disability and disadvantage: Selection, onset and duration effects. Journal of Social Policy, 33: 479-501.
Jones, H., & Reed, R. 2006. Water and sanitation for disabled people and other vulnerable groups: Designing services to improve accessibility. London, Britain: Loughborough Publishers.
LaGuardia, D. & Guth, H. 2003. American voices: Culture and community. New York, NY: McGraw-HillCompany
LeVine, R.A. 1984. Properties of cultures: An ethnographic view. New York, NY: Cambridge University Press.
Lewis, A. 1995. Children's understanding of disability. New York, NY: Routledge Press.
Marten, S. 1990. Prejudice or ambivalence? Attitudes towards persons with disabilities. Disability and Society, 5(3), 227-241.
Mazure, K., & Winzer, M. 1994. Comparative studies in special education: Integrated special education. Washington, DC: Gallaudet University Press.
Monks, J., & Frankenberg, R. 1995. Being ill and being me: Self, body, and time in multiple sclerosis narratives. In B. Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 107-139).
Murphy, R. 1990. The body silent. New York, NY: Norton Press.
Murphy, R. 1995. Encounters: The body silent in America. In B. Ingstad, & S.R. Whyte (Ed.), Disability And culture (pp. 108-120).
Murphy, R.F., Scheer, J.; Murphy, Y., & Mack, R. 1988. Physical disability and social liminality: A study in the rituals of adversity. Social science & medicine, 26(2), 235-42.
National Commission of Excellence in Education. 1983. A nation at risk: The imperative for educational reform.Washington, DC: Government Printing Office.
Nicolaisen, I. 1995. Persons and nonpersons: Disability and personhood among the Punan Bah of Central Borneo. In B. Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 15-38).
Obiakor, F.E. 2004. Comparison of special education in Africa and the United States of America: International Journal of Special Education, 6(2), 341-352
Priestley, M., Jolly, D., Pearson, C., Ridell, S., Barnes, C., & Mercer, G. 2005. Direct payments and Disabled people in the UK: Supply, demand and devolution. The British Journal of Social Work, 10, 1093.
Rehabilitation Act of 1973. Section 504, 19 U.S.C. Section 794.
Roth, W. 1983. Handicap as a social construct. Society, 20(3)
Sentumbwe, N. 1995. Sighted lovers and blind husbands: Experiences of blind women in Uganda. In B. Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 141-159).
Scheer, J., & Groce, N. 1988. Impairment as a human constant: Cross-cultural and historical perspectives on variation. Journal of Social Issues, 44 23-37.
Shukshin, A. 2005. Disabled often among the 'poorest of poor.' Bulletin of the World Health Organization, 83 4.
Smith, D. 2007. Introduction to special education: Making a difference. Boston, MA: Allyn & Bacon.
Swaminathan, M. S. 2005. Mission 2007: Every village a knowledge center. New Delhi, India Mission 2007: One World South Asia.
Talle, A. 1995. A child is a child: Disability among the Kenya Maasai. In B. Ingstad, & S.R. Whyte (Ed.), Disability and culture (pp. 39-56).
Turner, V. 1967. Liminaity and communities in the ritual process: Structure and anti-structure. Chicago, IL: Aldine Publishing
UNESCO 2004. The right to education for persons with disabilities: Towards inclusion. Paris, UNESCO
Union of the physically impaired against segregation. 2004. Fundamental principles of disability. London, Great Britain: United Nations Educational and Cultural Organization.
Whyte, S. R., & Ingstad, B. 1998. Help for people with disabilities: Do cultural differences matter? World Health Forum, 19 (1) 42-46.
Whyte, S. R., & Ingstad, B. 1995). Disability and culture: An overview. University of California Press, Berkeley, CA
World Health Organization. 1990. International classification of impairments and handicaps. Geneva, Switzerland: World Health Organization.
World Health Organization. 2000. International classification of impairments, disabilities, and handicaps: A manual of classification relating to the consequences of disease. Geneva, Switzerland: World Health Organization.
Wright, B. A. 1960. Physical disability: A psychological approach. New York: Harper & Brothers, Publishers.
Yanis, N. 1994. Fifty years of anti-apartheid struggle 1944 - 1994. Retrieved March 29, 2007, from http://www.5clir.org/AntiApartheid.htm
Year of the Disabled and the Decade for Disabled Persons: Motherhood. 1983. World Health Forum. 19(3):253-60
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