Cultural Interpretations of Disability

By

[Authors Name] [Faculty Name] [Department or School Name] [Month Year]

i Table of Contents

CHAPTER 1: 1.0 1.1 1.2 1.3 1.4

THEORISING DISABILITY .............................................................. 1

Introduction ................................................................................................... 1 The Historical Context ................................................................................... 3 Disability and Vulnerability ............................................................................ 8 ICF Definition of Disability ........................................................................... 14 Models of Disability ..................................................................................... 19 Individual Models .................................................................................. 21 Rights Based Model ............................................................................. 29

1.4.1 1.4.2 1.5

Role of the State ......................................................................................... 34 Introduction ........................................................................................... 34 Missionary Welfare Legacy................................................................... 36 Social Policy ......................................................................................... 38 Power Relations ................................................................................... 42

1.5.1 1.5.2 1.5.3 1.5.4

CHAPTER 3: IDENTITY ........................................................................................... 49 3.1 3.2 3.3 3.4 3.5 3.6 3.7 Introduction ................................................................................................. 49 Claiming Disability Identity .......................................................................... 49 Disability as a Political Identity .................................................................... 54 Folklore ....................................................................................................... 59 Sexuality and Disability ............................................................................... 60 Language and Naming ................................................................................ 62 Spirituality, Religion, Faith and Belief .......................................................... 67

References ............................................................................................................... 73

Disability CHAPTER 1: THEORISING DISABILITY

1.0

Introduction This section of the thesis sets out the historical, analytical and reflective

thinking that responds to the research question, and in it, the theories associated with the disability phenomenon are deconstructed. Given that T&T (Trinidad and Tobago) has such a diversity of cultural, social and political influences there will undoubtedly be many challenges in relation to sociological analyses especially as it is a country where there is also a lot of cultural homogeneity. One of the limitations in current disability literature is around the politics of cultural relativism in the historical context of the Caribbean and in particular T&T. By this I am not referring here to work which focusses on racialised culture making distinctions based on biological characteristics, but more widely to include values, belief systems, behaviours and experiences. The point is made because much of the literature addressed culture in relation to bodily distinctions . Sherry, (2004) reiterates that; Many epidemiological studies ... have produced reports of disability which are largely inconsistent with the ways in which the populations being studied understand their own experiences (2007:17)

This section of the thesis sets out the historical, analytical and reflective thinking that responds to the research question. Theories associated with the disability phenomenon are deconstructed in this section at the same time. Due to the fact, that T&T (Trinidad and Tobago) has such a diversity of cultural, social and political influences there are going to be undoubtedly so many challenges in relation to sociological analyses. Country which is here part of discussion has a huge amount of cultural homogeneity existent in her social order. One of the limitations in current

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disability literature is around the politics of cultural relativism in the historical context of the Caribbean and in particular T&T. This statement is although referring here towards work which focuses on racial culture making distinctions based on biological characteristics, but more widely to include values, belief systems, behaviours and experiences. Sherry, (2004) reiterates that; There are so many epidemiological studies like Bell and Klein, (2001); Barnes, (1999) and Barton, (2001) which have produced reports in the context of disability which are also found to be largely inconsistent with the methods through which the population are actually being studied for developing an understanding for their own experiences. The political disability movement has been very active and has given rise to the progression from the medical model to the right based social model of disability. Nevertheless, in reviewing the literature much of what is argued in support of the social model seems to imply that, if a magic wand could be waved over the society all disabling barriers will be removed, disability will no longer exist. This is indeed idealistic as there is no universalised meaning of disability and how it is experienced from culture to culture. Notably, one of the imperial processes of post colonialism i.e. the period of which is defined by Ashcroft et al, (1995) as expanding from the moment of colonisation to the present day, is that there was, and will be the exportation from the global West for their ways of thinking. The chapter begins with mapping out and interpreting the socio-historical events which might have shaped the production of disability in T&T, were taking into account in the argument of Barton, (2001) for understanding disability and different associated facts with them. Later there will be a very in-depth and thorough look on so many other aspects which are; disability and

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vulnerability, ICF definition of disability and also the models of disability. The models which are part of the discussion are individual models and rights based models. Later there will also be a thorough look on the role of the state; this will be done by including the missionary welfare legacy, social policy and power relations. Here, the study will be highly concerned regarding the complex social constructs, volatile sets of representations and also an intensely embedded existence in the historical and cultural contexts (p.169).

1.1

The Historical Context Throughout history, disabled people have always been there in all the

societies. Even though, during the late eighteenth century, the concepts of measuring bodies against biological standards and norms have become a very primary mechanism for which social norms of acceptance were being defined (Solomos and Back, 1996). The treatment of disabled people and understanding of what constitutes a disability has changed over the time (Deutsch and Nussbaum, 2000). For understanding these changes and how they impact on the experiences of disabled people requires referencing to the historical construction of disability along with a huge amount of research. At the time of failing to consider the historical and cultural background of the phenomena, assumptions are made that the lives of disabled people have evolved within a state of universal homogeneity and evolutionary context (Tyler, 1996). Oliver (1990) has explained that using Marxist theory which is based on the ways in which people live their lives and the choices they make is determined by the ideologies underpinning the society to which they belong. These are the most important factors causing diverse experiences for the disabled people and their disability based on the social structures in their society.

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Barille, (2003) postulates, there are various impairments which are understood and experienced in different ways throughout the globe. These are dependent on different factors such as cultural, social as well as economic interpretations for those impairments. On the other hand, they are also dependent on the level of availability of resources for the sake of eliminating the disabling environments. There is an alternative which must acknowledged that similar doesnt always mean equal. In addition to that, there is so much importance of validating the notions that each one of the impairments are different from each other, and due to this they require different solutions which must be found for accommodating all individuals with assorted impairments. These are circumstances as this is how they are completely able to participate in their relative societies (p. 209). Social model of disability must not be the one to be considered as a colossal entity. This model must be taken as a cluster of approaches for the understanding of the notions of disablement. There are different variants of the model which are assigned contradictory and importantly to an array of factors that result by the end as oppression and discrimination that is going to disable people experiences. Commonly all the variants of the social models belief that both disability and disablement are the two socio-political constructions. Due to all these unwelcoming physical environment, in a gig with the social attitudes, are negative outcomes that are encountered by the disabled people. These are factors which also result in the form of issues such as; discriminations, systematic oppression and exclusion for the disables. So, it might be appreciated that considering the theoretical considerate for the disability is not what is exclusively of the semantics and academic interests. Ways, in which disability is being perceived so far popularly, also has some profound effects on the methods in which all the stakeholders are being considered by the

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organisations. It is essential for the disabled people, NGOs and policy makers and all other stakeholders, to have a lawful role at the time of deciding how the resources are being distributed. The conceptualisations for so many different such disables, with the consequential ramifications for provisions of the disability services, have also become highly emotive and political as for the charged issues (Lang, 2007). Social model which have arisen as responses for the critiques of the medical model of disability is generated as a faction of so many academic writings. These writings were predominantly written by academics and also the activists which were disabled themselves. Most of these activists were in the full amount of antithesis for the medical model at the same time. All of this was not really devised with an intention of providing a very comprehensive review for the medical model. Disability are situated in the external environments are really wider, and they are not explicable as a consequence of individuals cognitive deficiencies or physical deficiencies. As a consequence, at the time of focusing in a manner in which disability is produced socially, the social model gives preference to the significance to the citizenship, politics, preferences and empowerment. In addition to all this disability is a result of failure of the society for providing adequate and appropriate level of services. As a result, requirement of the disabled people are not being adequately accounted for, contained by the contemporary social organization of the society. It is perceived in attitudinal term as a socio-cultural rather than a biological construct (Hahn, 2002). While looking at the historical periodization of disability issues such as capitalism and labour co modification and the roles they play in the materialist approach to disability are important to be considered (Oliver, 1996; Barnes, 1991). Oliver, (1996) has noted that an attitude towards disabled people in pre-capitalist

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societies differs largely. Finklestein, (1980) in discussing the materialist explanation explains that given disability is socio-politically and culturally constructed modes of production directly impact on the way in which disability is contextualised. The functional needs of capital produce workforce where disability is framed in an individualistic medical concept. So, it is evident that it has a direct correlation with the modes of production around agricultural co modification where bio-physical normality and strength is of utmost importance. An emphasis on physicality is a requirement to ensure greater production output resulting in the side-lining of those with impairments or requiring them to make adjustments to maximise their labour output. Able-bodiedness and normality are therefore connected to the individuals ability to provide value based labour in relation to economic productivity, and Oliver, (1990) believes that this is responsible for the modern day dichotomy of disabled individuals being categorised as able-bodied/productive or disabled/unproductive. Filkenstein (1980), in the vein of Oliver, in the analysis of the social structuring of disability maintains that capitalism and economic activity was geared towards increased productivity, and with it came ableism and the intolerance for those who were considered diseased, and with impairments being exempted from production. Industrial expansion saw those with impairments being defined as deviant and in need of therapeutic interventions. Industrial develops and advances disabled people are more likely to contribute to productivity whereas they would have been denied for that in the early stages of industrialisation. Oliver also makes the point that in addition to capitalism based on the mode of production concept, disability is also contextualised in relation to the core values and ideologies of the society. He notes that there are some societies in which having impairments is not cast in a negative light but seen as a blessing.

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The politics of colonialism which was dependent on the discursive construction of racial difference and used to exercise superiority has imposed Eurocentric and West centric knowledge and values throughout the colonised countries including T&T. The twin island state became a British Crown Colony following emancipation, and Augier, 1971 notes that during that period little attention was paid to health care provision. Turshen, (1977) in his work on colonialisation in Tanzania has highlighted that; The health sector has been subject to the same limitations and distortions under colonial rule as other sectors of the political economy. Widespread illhealth and essentially chronic malnutrition are not primarily internal problems. Just as continuing poverty is not. These are the products of colonial history" (Turshen 1977, pp. 32-33) With the end of the Crown colony system those demanding independence were required to use missionaries and international volunteer organisations to address health services. Creating dependency complex services which did not benefit the majority of the population, but by relying on community development and humanitarism it decreased the burden on the colonial administrators (Farrant, 1991). Implementing a hegemonic health discourse, this is ignoring the indigenous meanings. Turshen has demonstrated the issue as; British physicians and surgeons, firmly in control of the medical professional by the end of the 19th century, inevitably urged and won the adoption of the curative approach in the colonies. The rudiments of a system of public health and medical services were transferred from Britain. This is determined and designed in the metropolis rather than the colony; the colonial medical system was responsive to the needs of the rulers than the ruled (Turshen 1977, p. 8).

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Coming to Foucault, it is easy to understand how this was achieved as he shows how those with the power, status and established identity are able to detract from other views and opinions with the others being passive recipients of the imperialist discourse. This is still on-going as international humanitarian organisations transfer their theoretical discourses and ideologies to places where they are less likely to be challenged (Finkelstein, 1999). The West continues to be considering the enlightened subject even though the discourse does not reference the impact of colonial experiences and struggles, and its influence on how people assume their cultural identity. There is evidence that Post-colonial health human resources were heavily influenced by the presence of British Colonial Professionals, as they oversaw the training of those in the medical, nursing and related professions. The University of the West Indies Medical School sought to redress this knowledge imbalance and undertook considerable curriculum policy reform to reflect both a Caribbean reality as well as primary care focus. In the case of nursing the reality of Caribbean nursing examinations reflected increasingly progressive regional level cooperation in health not only at the regional governmental level, but also at the level of teaching, institutions as well as professional associations. These strategies are well intentioned, but the legacy of colonialistic processes is every present in so far as the knowledge systems upon which policy is developed is in keeping with Western globalisation agendas.

1.2

Disability and Vulnerability In T&T colonialism which is defined as an establishment and maintenance of

rules which is for an extended period which is through a sovereign power over the

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subordinates and unfamiliar individuals which are separate from ruling power (Skinner et al, 2000) was driven by agricultural co modification and its modes of production. This has a direct impact on the increasing economic vulnerability on individuals if seen from the functionalist construction of personhood which values the individual on their ability to produce in relation to employment, and that the individual must produce to be an economic asset to society. Where the individual is impaired the chances of poverty is defined as; an abstract notion of extreme deficiency or inferiority is increased. It is well documented that poverty is both a cause of and consequence of disability. Using Milton, (2007) argument that poverty is a social construct and that colonial structures differentiated between the economically poor, socially poor, deserving poor and the not much deserving poor, it is easy to see how those who were marginalised because of their impairments live below social expectations, and become economically poor. In Latin America and the Caribbean it is estimated that 82% of disabled people live in poverty affecting entire families (World Bank 2004, p.1). The World Bank Report on Disability and Poverty, (2009) concludes that poverty causes disabilities and deplorable living conditions and social isolation often leading to secondary disabilities for those individuals who are already disabled. In T&T disabled people are among the lowest earners with 63% earning less than 99; 8.2% earning between 100; and 200 and 4.1% earning up to 200. Out of an estimated disabled population of 45,500, there is 72% which are inclusive of students, retirees and the elderly, were either not working, or not seeking employment (SLC, 2005). Figure 1

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The diagram above shows; how the relationship exist between disabled people and poverty and how they are more prone to ill health which contributes to their poverty, with ill health and poverty contributing to the causes of disability due to malnutrition, poor sanitation, inadequate housing, lack of basic health care needs, with significant numbers of impairments being preventable either through adequate treatment or rehabilitation (DFID, 2000). People who are in this circle of health care deficit also find themselves victims of social and economic exclusion due to diminished productive potential within a work based capitalist society (Liggett, 1997). Disability affects the earning power of other family members. Lukemeyer et al, (2000, p. 412) in their study on the impact on poor families in the US caring for disabled children found that out of pocket expenses and having to give up opportunities to earn wages meant that they were at exceptional risk of economic and financial hardship, which are because of the heightened demands for gaining family resources and for reduced availability for the sake of employment. Park et al, (2002, p. 152) note that poverty should no longer be a secondary topic in disability policy

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because in their research in the USA they found a significant increase in the rate of childhood disability over the past 14 years among constituencies defined by poverty. Yeo, (2005) presents a model which better shows the relationship between poverty and disability based on the understanding that the experiences of marginalisation due to poverty and those due to disability are very similar. She makes the argument for a parallel policy development approach that takes into account the commonalities as they are a manifestation of the same processes. The attributes of poverty as quoted here as directly attributable to disability. The poverty is not something being used simply for a matter where the incomes are too low for meeting the basic survival needs. It is basically symptoms of imbedded structural imbalances; these are manifested in all domains of the overall human existence. As such, poverty is also something intensely related with powerlessness, isolations, social exclusion, marginalisation, vulnerability, and so mnay other such economical, political, social dimensions of depravation. This has resulted from limited or none access for the very basic services and infrastructures services, and this is also further compounded through the lacking of accessibility of people to technology, institutions, other productive assets, such as; land, credits and various resources which are required for ensuring a sustainable livelihoods (Yeo 2005:19). Figure 2

Disability

Marginalization: Isolation: Economic, social and political deprivation: lack of access to: Education/ employment/ health care/ legal and political processes/ healthy food/ adequate housing/ credit

Poverty

Society

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This is not being said for posing that all poor people are disabled, or all disabled people are poor but that they are manifestations of similar marginalisation processes. The fact which is evident at this level is that severe issues such as, disability are usually confronted by poor who are not able to have a control over the situation they are facing. This is due to their lesser ability to face such hardships due to their financial and economic troubles. As the incidence of disabilities increases, this also increase the intensity in perceptions of disabled people as being distinct from the general population, which exacerbates the emergence of categorisations in contemporary thinking, and the resultant constructions of various models by which disabled people are viewed and treated. These models are seen as tools that form the framework for societies to develop policies and strategies for meeting the needs of disabled people. However, these frameworks are often based on the predominant fundamental philosophy that the disabled body is seen as inferior, deviant and broken against the societal norm of natural physical superiority. Inherent in these ideologies is that the bodily or intellectual abnormality should be diagnosed and treated (Barnes and Mercer, 2005; Shakespeare, 2005). Disabled people are dependent on society, and are clients of what society has to offer, this is with no consideration at all that what the experiential lives of the disabled people are. They have a very high dependency over the state to which they belong. This case is even more severe for individuals who are already part of the overall poverty rate of the economy. In addition, too much emphasis around critical disability studies has been focused on white bodies and undertaken largely by white scholars and activists (Bell and Klein, 2001). This means that intersections within disability have been inadequately theorised leading to

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inaccurate assumptions which are not representative of the phenomena. This is slowly changing as disability research is been undertaken on Black and Minority Ethnic (BME) individuals (Begum et al, 1994; Priestley, 1995) though not enough. On the other hand, while using the frameworks and narratives that ignore experiential existences of the diverse range of disabled people, there is a reinforcement and legitimisation of the perceived realities. Even though, they are not representative of the experiences of the disabled person. Still they are considered as a very important part to be taken into account. The issues related to the disabled individuals and problem faced by so many of them is no more a myth or less discussed area these days. People are now almost involved in the area, more than ever before and this is what can be seen clearly in different parts of the world these days. Globally, the increased social and political attention which has been placed on disabilities, strong campaigning by disability rights movement, and the passing of disability legislation has led to a drive towards demystifying disability with the intention of creating greater equality of opportunity for disabled people. This has led to studies in academia gaining momentum (Pfeiffer, 1993), and an unprecedented growth in courses and journalistic contributions in disability studies (Linton, 1998), leading to an increase in literature on the process and experience of disablement including disability politics, and disability culture (Barnes, Mercer and Shakespeare, 2005). The local media in T&T have contributed to the focus of attention on disability by covering a range of related topics with headlines including (Hall of Justice Gets Access Ramp - Express 2011; Differently-able Faced Challenges in Tobago Express 2012). There has also been an increase in interest in disability studies especially since the University of the West Indies set up a Disability Studies Programme in 2004 with a view to sensitize

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students to the marginalization and discrimination experienced by the disabled within an un-adaptive society (www.sta.uwi.edu).

1.3

ICF Definition of Disability The International Classification of Functioning, Disability and Health, which is

renowned with the name of ICF, are basically the name given to a classification of health and various other health related domains. All of These domains are being classified from different bodies, individuals and also with societal perspectives with the means of two different lists; List of body functions and structure List of domains of activity and participation

Since individual functioning and disabilities occur in a context, so it is stated that the ICF is also inclusive of a list of environmental factors. The needs of children with disabilities are captured using the ICF version for children and youth (ICF-CY). The ICF: This is body which recognises the role of environmental factors, which they play in creation of disability and also the significance of participation as a desired outcome, and also their underlying health conditions; This one also in-tune with the very current trends towards some really very greater focus over the long-term health and functional outcomes in the fields of health and community services; ICF is also responsible for presenting an overarching conceptual framework, which is for the sake of developing and analysing supporting some wider range of governmental policies; joined-up data for

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This one also incorporates some of the very key concepts which are from a very wide range of fields and this is with relation to human functioning. It also offers an extensive kind of menu from which different items and concepts are able to be selected for the designing the information systems, or for targeted clinical or even some of the research applications; and

This is also responsible for providing a detailed hierarchical set of codes for assisting at the time of collecting the data. Issues around defining disability play a major role in both theoretical and

policy oriented studies of disability (Liggett 1997, p. 178) as they differ globally across cultures (Ingstad andWhyte, 1995). The diversity in cultural environments affects the definitions of, who will be considered disabled, and who will be excluded from the definition (Solarsh and Hofman, 2006). Shakespeare and Watson 2001:22 refer to disability as a complex dialectic of biological, psychological, cultural and socio-political factors, and it is the acknowledgement of this complexity that has led to the International Classification of Impairment, Disabilities and Handicap (ICIDH) being revised into the WHOs International Classification of Func tioning, Disability and Health (figure 3). Figure 3

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Functioning and disability includes: Body Functions and Structures; these are described as the very actual anatomy and physiology or psychology of the bodies of human beings. Activity and Participation; these are described in the form of the functional status of the person, inclusive of the communication, interpersonal interactions, self care, mobility, learning, application of knowledge and so on.

Contextual factors include: Environmental factors; these are the factors which arent in the control of the person, such as cultural beliefs, work, laws, family, government agencies and so on. Personal factors these are the factors which are such as; race, gender, age, educational level, coping styles etc. However personal factors are not specifically coded in the ICF because they vary among cultures. The ICF definition is fundamentally a framework measuring health and disability functionality at an individual and population level based on the perspectiv e that disability arises when barriers exist to participation (WHO and World Bank

Disability 2011, p.5).

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It embraces a bio-psycho-social model which integrates both the

medical and social model, giving consideration to the interaction between individuals biological/impairment limitations; psychological factors which relate to personal experiences that contribute to the persons disablement; and the disabling environmental factors. In short, it addresses the physical bodily perspective taking into account its physical structure and function, and that of the individual and wider participation in society (De Kleijn-De Vrankrijker, 2003). However, it attempts to consider the diverse characteristics which make up the disabled population. Still its methodology has been criticised as being difficult to put into practical usage, and it is unlikely to aid in the betterment of disabled peoples lives (Oliver et al, 2006). One reason of this is the mechanism which measures health and disability and creates labels and classifications perpetuates stigmatisation and discrimination. It has also been criticised because the way in which the bio psychosocial theory is meant to be interpreted within the definition is not explicit creating various interpretations by practitioners (Imrie, 2004). This has a direct effect on the way in which different countries develop their measuring standards with the results which are becoming statistical anomalies, and lack relevant, accurate and upto-date data and information. Having said that, devising a universalised definition of disability will always be problematic because of the socio-cultural understanding of the way in which individual societies perceives disabilities, and the ways in which disabled people perceive themselves, and the effects of limitations caused by their impairments. Another shortcoming identified is that of the exclusion of the disabled persons subjective experience of meaning of participation in a life situation. The WHO (2001, p. 229) have described participation as observed performance but this does not

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give sufficient attention to the perspective of the disabled individual who are the subject or is also not considering their personal experiences of their disability, motivations and habits, and also their involvement in particular situations. Although, this is based on an external observer point of reference rather than focussing on the meaning ascribed by the individual with consideration given to their free will and quality of life, role of satisfaction/happiness, and local culture as experienced by the disabled person (Wade and Halligan, 2003). This shows that measuring and categorising participation is based on the observable external indicators and not on the actual subject experience of the disabled person, thereby their autonomy and self-determination to chooses how and what they participate in, is diminished and replaced by person perceived participation i.e. the decision is made by the professionals (Perenboom and Chorus, 2003). Hemmingsson and Jonsson, (2005) give an example when they say that by observing a person watch television we gain limited knowledge of this persons active involvement and engagement in the occupation (p. 573). In addition what can be considered to be environmental barriers for participation of one individual may at the same time be a facilitator to another, and considered to be either a help or hindrances to the persons participation in a particular situation. Hemmingson et al, (2003) give the example of a teaching

assistant who may be doing their best to facilitate academic participation, but at the same time be hindering social participation. Therefore a single life experience may involve having different meanings ascribed to participation. It should however be noted that the ICF definition is an important advancement in regards to moving the disability agenda from being medical disease orientated to a more inclusive way of thinking by the inclusion of environmental and

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social factors. Its strength as an international model has influenced by its emphasis on reduction of barriers and creating a more inclusive society thereby providing quite a comprehensive interpretation of disability upon which the processes for change can start happening and awareness raising and effective service delivery can be built. The WHO model of disability is ever evolving so it is anticipated that there will be revisions to the ICF as time goes on.

1.4

Models of Disability Disability is a complex phenomenon with a number of categorisations and

constructs i.e. models which identify some of the factors which cause and/or exacerbates the effects of disablement. There are a number of disability models under contestation which place disabled people into a homogeneous group, and where the population is diverse racially, demographically, and culturally these varying identities not only expands and shifts but confuses the existing notions of disability (Bell, 2011). There are so many models which are constructed so far in the context of disability. These models are tools for the sake of defining impairments and, then ultimately they also provides basis on which the governments and societies are able to devise strategies for the sake of meeting the requirements of the people who are living with disabilities. All of these are useful frameworks in which for gaining an understanding of disability issues and also for the perspectives which are held by those who are creating or applying all of these models. These models are also by two different fundamental philosophies;

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First one: The first is the philosophy which sees that the people with disabilities are the individuals dependent on society. This is what might be resulting in the form of discrimination, paternalism as well as segregation.

Second one: Coming to the second one, this one perceives that the people with disabilities are the customers of what society has been offering. This is what leads to a choice, equality of human rights, integration and empowerment at the same time. It is essential that we must not look at the models as some series of exclusive

options in which some are superior for replacing the previous one. The fact is that their development as well as their popularity is what provides us with a continuum over the changing social attitude towards the disability and where they are found at some particular span of time. All of these models are actually changed with the change in the society. Taking this fact into account that, this degree of understanding, and our future objectives must be there for developing and operating a cluster of models. This will also empower people with disabilities, giving them full and equal rights alongside their fellow citizens. In spite of the fact that disabled individuals are with different issues problems and states, still at different ages, races, and different kinds of disabilities. They still share a lot of things in common. These are common histories and common experiences of being discriminated in some way or other. As this research is based on understanding the conceptualisation of the disability experiences in T&T it is important to review the disability discourse around the evolving theoretical representations of disability. These models are the basis upon which disability is defined, and the foundation upon which service provision and infrastructure is developed and implemented. So in the quest to understand

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disability in the socio-economic historical environment of T&T it is necessary to consider the individualisation and medicalization of disability within the context of religion and capitalism. This is because the religious/moral model is historically the first implicit theory of disability with its interpretations of bodily differences being grounded in biblical doctrine. The other reason is because the core ideology of individualism is directly linked to capitalisms demands for productivity and it is this ideology which gives rise to seeing those with impairments as the converse to ablebodiedness and normality and led to the medicalization of the ability to provide labour (Oliver, 1990). This is further elaborated this view of disability is ultimately produced by the functional needs of capital for a particular kind of work force IBIDX11. It is political activism that fuelled the drive towards the re-evaluation of the disabled identity and challenged the epistemology of the individual model of disability by coming up with a rights based perspective. However, both the individual model and the rights based model have been instrumental in providing valuable insight into the disability phenomena even though there are deficiencies in both concepts.

1.4.1 Individual Models Individual models focus on locating disability within the individual and are generally based on the notion that disablement is a personal tragedy. In societies where religious, spiritual or magical ways of thinking are dominant judgements of what is good and what is bad/evil are instilled as a moral compass and governs individual behaviours in relation to their social and spiritual lives and relationships. There is an assumption that disability is more likely to be perceived as punishment by the Gods, as quoted in the Bible John 9:3 It was not that this man sinned, or his

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parents, but that the works of God might be displayed in him, or as a result of witchcraft (Oliver, 1990). In societies with strong theological Christian doctrine the use of prayer, exorcism, sacrifice, and rituals play a prominent role in coping with disablement which are not considered to be blessings, supernatural consequences or angelic miracles but are due to sin and sanctity? The use of prayer is evidenced in Luke, 13: 18 Even bodily infirmities, unless very grievous, should not keep us from public worship on Sabbath days. This woman came to Christ to be taught, and to get good to her soul, and then he relieved her bodily infirmity. Attitudes for the individuals which are with impairments are basically dependent on the central religious beliefs. These are the beliefs in the particular regards in which they are not necessarily all the time negative or positive. Bazna and Hatab, (2005) have stated in their study in the context of disability in the Quran has concluded that, concept of disability in conventional sense is not somthing found in the holy book of Muslims which is Quran. To a certain extent, this holy book concentrates on the notions of disadvantage which are created by the society itself and is imposed on those individuals who might not possess the economic, physical and different social attributes which are valued by the people on some certain time and places (p. 05). On the other hand when it comes to Bible Leviticus 13 45-46 leprosy is dealt with by scorn and social exclusion The leprous person who has the disease shall wear torn clothes and let the hair of his head hang loose, and he shall cover his upper lip and cry out, Unclean, unclean. He shall remain unclean as long as he has the disease. He is unclean. He shall live alone. His dwelling shall be outside the camp. Illustrating how religion and spirituality as a cultural norm and philosophical ideology is entangled in the concept of disablement.

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In the nineteenth century the Tragedy/Charity Model emerged (Deutsch and Nussbaum, 2000) which is the cultural expression of the medical model based on the assumption that disability is a tragedy, or a loss causing suffering and blighting lives (French and Swain, 2004). The philosophy behind the charity, health and welfare systems is based on this notion of disability as a personal individual tragedy (Richardson, 1997), and has at its core disablement as a dilemma by virtue of bodily failure. The assumption is that disabled people are the victims of circumstances whit pity being an appropriate emotional response to their impairment. This devalues them and reinforces the perception that they are incapable and in need of charity (Coloridge, 1993). Presuming that disabled people are dependent, unable to enjoy economic wellbeing and therefore require society to support them (Fulcher , 1989) as they strive to attain able-bodiedness. The inference that disabled people are abnormal and inferior and unable to make a valuable contribution to society has resulted in them being negatively portrayed, and often used as instruments of comedic value to be laughed at and ridiculed, pitied, feared and denied full and active participation in everyday life (Rieser and Mason, 1992). This personal tragedy discourse can be seen in the media, where the use of emotive advertising and stigmatised representations of disabled people is a means to gain financial support for a charitable cause, even though the messages may carry insulting and demeaning representations. By depicting disabled people as

suffering, broken or imperfect and in need of fixing, especially when appeals are made for contributions/donations plays on the emotions and empathy of the reader/viewer, giving the impression that the disabled person has a personal tragedy necessitating eradication or normalisation by all possible means (French and Swain,

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2004). This notion of striving for normality and the proliferation of organisations supported by professionals in the 1970s to develop the needs of so called grassroots people (Lacey, 1987) further reinforces the personal tragedy/charity perceptions. Of great significance in the conceptualisation of disability is the medical model which has at it roots the ideology of determining physical difference and perceived bodily abnormality as a result of impairments, and the functional limitati ons or the psychological losses due to these impairments. It assumes that the desired outcome is for the impairment to be mended to enable the person to be assimilated into what is deemed to be normal society. This theory emerged in line with the profes sional and technical advancement in medicine in the nineteenth century (Drake 1999), and attempted to shift the focus from the charity models moralistic view of disability to one focussing on fixing biological defects and bodily failures to a state of normality (Price and Shildrick 2002). There have been active and lively debates on this concept of disability including amongst medical sociologists who have dominated the arena with their research on disability from an illness/impairment perspective. The model of medicalization of disability is said to be strongly influenced by a form of biological determinism that measures bodily difference against a notion of normality and considers those with damaged bodies that look different, act different, and do not work properly as deviating from the norm (Shakespeare, 1996). Suggesting that if the body is normal and the individual is able to achieve physical independence; they will achieve independence in all aspects of their life (Wilson and Wilson, 2001). The medical model is summarised by Irie et al, 1997:264 as; The dominant way of thinking about disabled people is related to the functional limitations paradigm, which asserts that the most significant

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difficulty with disability is the loss of physical or occupational capability. This perspective argues that the disability resides exclusively with (in) the individual, which is reducible to the nature of the impairment and is treatable much as a doctor would attempt to cure a patients disease. A range of research shows the medicalisation of disability as a significant factor in societys treatment of disability issues. The consequence of the medicalising of disabled people is that the medical professions are then required to cure, heal, correct or halt any impairment for the individual to attain able-bodiedness. This is achieved by clinically assessments, diagnosis and classification of the body, with the control and power of the disabled persons identity given over to the medical professionals who in failin g to recognise the distinctions of individualised disability identity work on the premise that disabled people have something wrong with them which needs fixing (Oliver , 1998). Lipton, (1962) cited in Illich, as stated by Killeen 1976, for example that 90% of tonsillectomies performed in the USA at the time studies were unnecessary, and that children learn to be exposed to technicians who, in his presence, use a foreign language in which they make judgements about his body; he learns that his body will be invaded by strangers for reasons they alone know; and he is made to feel proud to live in a country where social security pays for such a medical initiation into the reality of life The medical model reinforces the professional preoccupation with treating and curing the individual, displacing them from their social context, by excluding them from that key decision making process. This state of affairs which multiplies disabling dependence is in part what Illich, as stated by Killeen 1976:9 refers to as social iatrogenesis which designates all impairments to health because of the way

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in which institutional health care makes socio-economic transformations attractive, possible, or necessary. This occurs for example when Healthcare is turned into a standardised item, a staple; when all suffering is hospitalised when language in which people could experience their bodies is turned into bureaucratic gobblegook; or when suffering, mourning and healing outside the patient role are labelled a form of deviance By imposing a social norm which places values upon physical embodiment (Zola, 2005) where normality is revered, and disability is seen as an individual problem with those with impairments thought of as objects requiring bio-medical interventions, human relationships become distorted into thinking that it is the biological body which shapes and informs human existence (Drake, 1999). The inference being having impairments is something to be fearful of and embarrassed by (Rieser and Mason, 1992) enabling the medical professionals to offer psychological and physiological interventions and educating their patients with the underlying message that the individual requires help to come to terms with their lack of normality (Oliver and Sapey, 1999). Perceptions of humanity and relationships

with disabled people are misconstrued as society is unsure of an uneasy in dealing with impairments, so disproportionate attention is to returning the body to normality with disabled people being subjected to numerous painful surgeries and medical procedures. This is done mainly to fulfil their families wish to make them appear as normal as possible and not necessarily to increase their comfort and ease of mobility (Linton, 1998). Bio-medical interventions have also been known to cross the critical threshold where they become an incurable perversion of medical practice creating dependence on medical professionals and loss of self-empowerment (Killeen, 1976). Brisenden (1986) stated that

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The individuals related to the context of medical tend towards seeing all difficulties which are through the perspective of proposed treatments for any particular patient; this is without recognising the fact that the individual has to weighup whether the treatment is actually fitting well to the context of some particular economy of their life. Previously it was seen that the doctors have been really very willing when it comes to suggest medical treatments and hospitalisations, this was the case even when this was not what is going to necessarily improve the quality of life of the related individuals (p. 176). The medical model has been criticised for failing to reflect the realities of the experiential existences of disabled people (Barnes, 1999) because by focusing on the body and placing disability at the individual level it is the bio-physical incapacity which defines the quality of life of the individual, thereby ignoring the lived experiences of the individual. By this I mean that the medical model does not recognise the socio-cultural responses to impairments, even though the quality of life of the disabled person depends on them achieving the life style of their choice, appropriate to their own cultural context. The misconception that a person with an impairment is physically inferior and requires curing to enable them to function normally does not take account of the particular cultural context within which disability is being contested as exampled in the different ways in which disability is experienced in a religious context. Normality is experienced differently according to the environment and depends on the way in which one is required to be and act within a particular society. It is heavily influenced by cultural meanings and interpretations, and in that regard, medical interventions for example curing, treating, and offering therapy need to be placed within the societal environment in which it is being lived, as they are responses to an individual deficit notion from a non-disabled

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world view. This is not to say that there should be any denial of the physical pain or otherwise discerning effects of impairments, nor should medical interventions cease, but that any interventions should be guided by an understanding of the bigger picture around the social norms of the contemporary society in which disability is being lived and experienced. It is worth mentioning that Oliver 1996:31 challenges the notion of an overarching medical model of disability instead seeing it as an individual model of which medicalization is a significant component. In summary the medical model perpetuates the notion that disabled people require medical intervention, to enable them to live a normal life with a universalised view that disability is individualised or medicalised in all societies, thereby ignoring that disability is defined and perceived dependent on the core values and belief systems within a particular society. It has been criticised for the lack of

acknowledgement of the social, economic and political factors that influence the life outcomes of disabled people. Having however analysed the medical model, there has been an arguable benefit as for it has enabled improvements in bodily functions, leading in some cases to physical independence, and in those situations enabling the experience of discrimination to be significantly reduced, with knock on effect that other aspects of the individuals life will have also achieved independence (Wilson and Wilson 2001). From the point of view of the State, the medical model has led to economic growth, as it has enabled the development of related industries ranging from biomedical services, to technological services. Albrecht and Devlieger, (1992, p. 28) in his study on the profitability of the rehabilitation industry notes that selected sets of social relationships are judged undesirable, dysfunctional or deviant and are targeted for interventions thus they increase profitability. This idea of rehabilitation

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as a profit making industry has also led to the mushrooming of a number of charitable organisations, and it has proven financially viable for a range of medical professionals with services born out of disability rehabilitation for example, speech therapists, and physiotherapists who owe their livelihoods to the notion of having to (medically) fix disability (Gusfield, 1989).

1.4.2 Rights Based Model Alternative views to the individual models of disability have always been present among disabled people (Scotch, 2002), but increasingly in recent years there has been a fundamental re-conceptualisation of disability resulting in a number of alternative models. The emergence of further research on the personal experience of disabled people, strong campaigning by disability rights movements (which was inspired by the black civil rights movements, and the womens movements in the 1960s and 1970s), and the evolution of disability studies as a discipline in its own right, have all meant that the counter discourse to the individual model i.e. the social model has gained momentum. This rights based model was developed in the 1970s by a group of disabled scholars and activists who came together under the banner of the Union of the Physically Impaired against Segregation (UPIAS) and revolutionised the understanding of disability internationally (Goodley, 2011). Shakespeare, (1992) states that the quest of the disability movement has been to break the link between our bodies and our social situation and to focus attention on the real cause of disability i.e. discrimination and prejudice (p.40). The model represents a major shift in thinking from the individual model ideology to one which is based on the argument that disability is situated within the wider social environment and not merely as a consequence of an individuals bio -

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medical impairments. It has been enthusiastically supported by many disabled people as being the new orthodoxy in conceptualising disabilities (Oliver, 1996; Priestley, 1999) and welcomed by many scholars who share the view that disability is not a corporeal deficit, but as a result of the situations imposed by the social, cultural, political and environmental attitudes and barriers in society. Some argue that by failing to take account of societal barriers disabled people are deprived from experiencing their full personhood and are therefore oppressed. Abberley, (1987) does however note that in claiming disabled people are oppressed requires an acknowledgement of the differences between their lives, and those of others in society including other oppressed groups. The rights based ideology is increasingly being embraced across the international disability community as a way of making good societal barriers of discrimination, oppression and environmental obstacles such an inaccessible transportation and buildings. The models dominant discourse is that disability is not an individual problem or deviance or functional limitation; that impairments do not need to be medically constructed; nor are disabled bodies in need of manipulation, reconstruction or rehabilitation in order for them to be normal (Finkelstein, 1991; Oliver, 1984; Quinn 1995). Bengt Lindqvist the UN Special Reporter of the Subcommission on Prevention of Discrimination and Protection of Minorities affirms that Disability is a human rights issue. So long as Persons with Disabilities are denied the opportunity to participate fully in society, no one can claim that the objectives of the Universal Declaration of Human Rights have been achieved (DFID, 2000, p.5) A characteristic of the social model is that it makes clear distinctions between impairment and disability, with impairment being defined as a characteristic

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feature or attribute within an individual which is long term, and may or may not be the result of disease, genetics or injury. Disability on the other hand is defined as the disadvantage or restriction of activity caused by a society that takes little or no account of people who have impairments, and thus excludes them from mainstream activity (Thomas et al, 1997). By making these distinctions the proponents of the social model emphasises the importance of the rights of disabled people, calling for the policy and service delivery to be geared towards servicing the needs of disabled people (Marks, 1999), taking into account their empowerment and care (Thompson 1998). The central tenet of the social model is that it essentially separates impairment from disability and decentres the physical body placing the emphasis on societys disabling effects, and defining disability as a relationship bet ween an individual with impairments, and social obstacles and barriers. There is no denying the paradigm shift from the medical model to the social model has been responsible for significant attitudinal improvements towards disabled people and in the way in which disability services have been developed and delivered. Notwithstanding that, the social model has been under scrutiny for the past decade with many debating its values and merits (Morris, 1991; Crow, 1992; French, 1993; Williams, 1999; Shakespeare and Watson, 2001). Some rightly

question the validity of underplaying the significance of impairments and the danger of de-voiding the embodied experiences of disabled individuals particularly those for whom their identity is based on their embodiment and/or impairment (Morris 1991; Crow 1996) Many argue for a renewed social model that incorporates impairment to fill the gap in the existing model which does not sufficiently acknowledge the significant impact on the individuals daily life of the pain and suffering they may endure because of their impairments. The social model lacks emphasis on

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problemitisation of the body, with Chapelle et al, 2001 highlighting shortcoming in the way in which those individuals with intellectual disabilities for which the physical environment may not be disabling. A notable omission is its inadequacy to include historical biological component of oppression for example internalised oppression brought on by the individual inability to fulfil societal standards due to existing historical ideology of ablebodiedness and normality (Abberley, 1987). Further gaps are identified in relation to the cultural politics of the other intersectionalities of gender, race, age and sexuality and the experience of being disabled (Riddell and Watson, 2003; Marks 1999, Stuart 1992, Shakespeare et al 1996) as it approaches disability as a unitary concept. Crow states that even though, there is no evidence that the social model has ever suggested that disability is a factor which represents the total explanations. Nor it has considered that impairment is not something which is taken into account. In some of the cases it feels as, in case this focus is really very absolute that it is something contributes in the form of while assuming that impairment has no part role, while determining our experiences (Crow, 1996, p.2). Oliver 1996 clarifies this idea by explaining that interpretations of the social model are often taken too rigidly, creating an oversimplification of the realities of the disability, which is not entirely down to the model itself but in the way in which it is used. The critiques emphasise not only its limitations of the tendency to ignore the lived embodied experiences of disabled people and their survival (Shakespeare 2006), but also the failure of the model in addressing the historical specificity, socioeconomic status and social exclusion (Barnes et al, 1999), for example how the model disadvantages the poorest in society, as they are less able to have the

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capacity to effectively come together to assert their rights (Hickey and Bracking, 2005). Borsay, (1986) explains that upper and middle class, which are with wealth and investment incomes, a better level of salaries or even better superannuation schemes, is having a really very different experience in the form of impairment towards the people who must be relying on the state social services (p. 186). In relation to specific cultural norms the issue of rights based notions of disability are of equal importance. There is an assumption that western based

concepts of individual rights are transferable, overlooking societies where collective consultation and decision making is the acceptable norm. Lang, (2000) gives the example of the social custom in India where irrespective of disablement or not, a major decision such as; to who one should marry is not taken by the individual but in the extended family. The rights based ideology is quite often used by organisations to benefit from the moral authority and political appeal of the human rights discourse in relation to attracting and acquiring international development funding. That is not for reflecting not all international organisations use the rights based model as their foundation for development e.g. the USAIDs work is based on inclusion; It has been told that human rights is not what fly at the USAID, this is not meaning that they were actually opposed for upholding the very basic human right. It is concrete measures for growth, development that push meaningful button and quantifiable. As extensions of this particular idea, it was pointed out that agency might be concerned only with the outputs whereas; DPOs are interested for outcomes (Albert et al, 2005, p. 24 cited by Yeo, 2005).

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In conclusion, the debates for the inclusion of the experiential meaning of embodiment to be integrated into the social model are a positive step in the right direction. It must also be acknowledged that the social model has played a significant role in the politicising of disability and in the growth in disability academia outside of the parameters of medicalization. It has been instrumental in promoting the values and self-worth of many disabled people helping them to adjust to the psychological aspects of their lived experiences. Crow, (1996) cites that the model has impacted positively on her in that; Discovering this way of thinking about my experiences was the proverbial raft in the stormy seas. It gave me an understanding of my life, shared with thousands, even millions of other people around the world (p. 1). It is evident that the social model constitutes a substantial improvement on the individual theorisation of disability and has been an empowering force in bringing about social change and justice for many disabled people, and having a positive outcome on their psycho-emotional wellbeing.

1.5

Role of the State

1.5.1 Introduction A population and housing census was undertaken in T&T in 2000 to capture disability related data. The results determined that approximately 45,000 people out of a population of 1.31 million were disabled. The data was compiled with disability interpreted as having an impairment under these eight categories i.e. seeing; hearing; speaking; mobility; movement; gripping; learning; behaviour. The question was worded as do you suffer from any longstanding disability that prevents him/her

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from performing an activity, and it is this definition that is the framework of data statistics and policy principles used by the State. There has been increased interest in the disability phenomena at State level as evidenced by the emergence of a Disability Affairs Unit which was set up in 1999 as part of the Ministry of the People and Social Development. T&T has been

aspiring to achieving developed country status and one of the steps is undertaking political measures to implant itself within the globalization agenda. This necessitates subscribing to the somewhat abstract rhetoric of an international disability code of practice and with it came the development and implementation of a National Policy on Persons with Disabilities in line with other developing/developed nations; the signing of the UN Convention on the Rights of Persons with Disabilities; and commitment to developing disability legislation even though legislation by itself will not mean that the human rights of disabled people will be realized (Parmenter, 2001). Governments of Tobago and Trinidad are found to be really very committed to the full enclosure as well as holistic development of people with different kind of disabilities. While detecting the developed country status by the year 2020, Government is unfaltering in the resolution of addressing the disability related issues from human right perspectives, which as an essence is for viewing people with disabilities as holders of rights which are going to be enforced and protected (National Policy undated). A look at the literature in the region highlights a research gap and analysis on the impact of the State policies, and projects and services and how they affect the realities of everyday lives of disabled people. This observation is supported by Dudzik et al, (2002) and is also mentioned in the National Policy.

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There is a critical need to undertake studies focusing on issues, which affect the lives of persons with disabilities and their families. Best practice and

innovation in service provision (including inclusive education, mainstream vocational training, career guidance and employment services) are possible areas of research (National Policy undated). The National Policy for Persons with Disabilities is the State document which sets out the guiding principles and action plans centred on reforming the quality of life for disabled people. It is dominated by international disability discourse of

medicalization, rehabilitation and welfare as it sets out to mimic western processes in keeping with the legacies of colonialism. Chapter. There will inevitably be disparity in State rhetoric and the disability reality as insufficient cogitation has been paid to its inclusion in wider national economic development, and the lack of incorporation of disabled people in the discourse. This is not unique to T&T and it is worth mentioning that the WHO, (1990) have stated that nowhere has all the obstacles been overcome, despite the important steps taken by some countries to eliminate or reduce barriers to the full participation and equality of disabled persons(p.7). This is explained in further detail in

1.5.2 Missionary Welfare Legacy Given that T&T governance and parliamentary democracy is based on the Westminster model inherited from Britain I argue that its State policy ought to acknowledge and take account of the socio-historical and political effects of colonization. According to Fanon, (1982) part of the colonial legacy is the

dependency complex and this was enhanced by the missionaries who arrived in

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the Caribbean with their notions that best practice models of service provision required institutions (Kalyanpur, 1996). It created ambivalence and uncertainty in the population in so far as it reinforced the assumptions that cultural practices which were different from the coloniser were to be scorned, derided and victimised especially because at that time white knowledge was deemed to be good and pure, and black as evil and corrupt. The missionaries were considered empowers of the people promoting the subject/subordinate relationship. Thus reinforcing the idea that those in the West having superior knowledge with the locals strived to be similar to them (Hooks, 1993; Gilroy, 1993). Esteva, (1992) notes that many countries

continue to believe that they need to use western knowledge and ways of working on order to alleviate their problems, and this is especially applicable where the medical professionals has been trained in the West or receiving training based on a western bio-medical curriculum. Kalyanpurs study in India found that many in the middle, upper classes and those western trained cling to the belief that western knowledge is modern and therefore the way forward. The missionaries heavily influenced the way disability provision has evolved and its reliance on charity and humanitarianism with the privileged supporting those considered to be less fortunate. Paterson et al, (2006) claims that disability policy is no longer governed by the personal tragedy ideology and humanitarianism, but I dispute that based on the ever increasing reliance on international networks of social and rehabilitation agencies. Encouraging the giving of charity dis-empowers the

disabled individual, rendering them needy objects of pity. The missionaries were pioneers in the creating and building of rehabilitation institutions, and segregated schools of industry where disabled workers separated from their non-disabled counterparts so that they could learn vocational skills as a way of being economically

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productive citizens. One of the remaining legacies of this is The National Centre for Persons with Disabilities which was established 1964 as a branch of the Trinidad and Tobago Society of the Rehabilitation of the Disabled and provides opportunities for disabled young adults to learn vocational and life skills to be economic contributors to society in keeping with the trend of welfare enterprises. This system of rehabilitation is imbedded in the functionalist approach which is centred on impairment, personhood and dependency, and concerned with maximizing or restoring functionality or creating the appearance of normality where possible to create a productive body. It is defined in the T&T National Policy as an organized program of medical and clinical treatment designed to maximize residual physical, perceptual and cognitive abilities following disablement and is very evident in the general principles of the T&T National Policy which state its the continued support of NGOs which provide preventative and rehabilitative services to persons with disabilities. Ingstad andWhyte, (1995) argues for attention to be paid to the cross cultural transfer of rehabilitation models and services and especially as history and culture are important to the way in which disability services, policies and practices are experienced.

1.5.3 Social Policy The enactment of the national policy aligns itself to the personal tragedy theory of disability and that outside of the self, there is unequal distribution of goods and services, and underlying discrimination. In looking at the States response it features disability as a problem of individual disadvantage that requires fixing via the development of social policies, even though at a more basic level insufficient work has been done to understand the constructs of disability relative to its historical and

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political context. The normalizing processes use discursive opposites and regimes of truth to determine who is normal or abnormal as a way of control and power (Foucault, 1977). State development processes affect the way in which disability is perceived and experienced, for example through agricultural co modification, industrialization, economic diversification, infrastructural advancements, evolving social relations which are all part of the countries complex developmental growth measures. Paterson et al, (2006) citing Hahn, (1995) proposes that disability is defined by social policy which does not take into consideration that the problems may lay within society, the environment or the individual and those interventions are developed notwithstanding these considerations. That is not to say that undertaking of the

development and implementation of a National Policy for disabled people is a bad thing because there is no country in which a major policy or programme initiative is not required (OReilly 2007, p.119) This is evidenced in Abberleys work in which

he highlights the link between disability, poverty, and underdevelopment especially in developing countries. Generally speaking because disability policies have been developed as reactive and fragmentary responses to addressing political issues disability policies they lack the co-ordination and unification that is required to mainstream them into general social policy (OReilly, 2007). They are established and promoted in keeping with the ideologies of the service providers and bureaucrats, and to a much lesser extent to those of the wider community and disabled people themselves (Bickenbach, 2001). Policy makers often look for solutions to the issue at hand from a framework of existing resources, ignoring the valuable input that could be gained from the wider community for example the researcher who observes, measures,

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samples and analyses the problem; the disabled person who lives the experience and knows firsthand what their needs are and what influences their existence. Lunt and Thornton, (1997) in their research on disability employment policies in 18 countries highlighted that they had found that there was a lack of cohesion and interconnectedness among state departments and service providers and lack of mainstreaming knowledge and information on the ground. In order to redress some of the shortcomings is that disabled people have politicized themselves and come together as a social movement. Recognition of these failures has now become accepted wisdom, and in a search for alternatives NGOs have been discovered, peaking up like islands in an otherwise bleak sea (MacKeith, 1993, p. 2) It has been said that community development groups are considered to be more efficient and innovative than the State when it comes to addressing the needs of the individuals especially as it allows for the service users have more choice and control (Lankester, 1994). So in the interest of inclusion, NGOs have been taking on roles to address what they perceive to be shortcomings within state policy, for example the Consortium of Disability Organisations in T&T which was set up in 2001as the umbrella body for all disability organisations in the twin island state. Their organizational statement reads as such, a CODO was formed, this was done on principle of strength in unity, and along with that this was with united forces that we have an ability to advocate at national levels regarding the issues which affect all the individuals with disabilities in Trinidad and Tobago. As the members are disabling the organisations, and the purpose is basically to provide support to all of those while building and strengthening the institutions.

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The discourse used in State policy is one that allows assigned medical professionals and officials to be the gatekeepers of privilege positioning as they control the definitional processes. This implications of this is the creation of a hierarchy on perceived functional ability with category of disabled people ascribed to those who because of their involvement in the census and national surveys, are required to define their identity dependent upon the interpretations of disability as defined by the State. This is even though there is the danger that current policy is not situated culturally, historically or spatially in the local context. The National

Policy in calling for a national disability survey to be conducted to determine the size of the group and the different types of disabilities, to be collected on an ongoing basis is continually ascribing the population to medicalised categorisations with its interpretations of disability positioned within the functionalist model that impairments are dysfunctional to society. In the Trinidad and Tobago National Advisory Council report it was found that the health care system was highly medicalised and that as a result, programmes and activities were being adversely affected by this inappropriate emphasis (Peat Marwick Mitchell 1978:15 cited in Ramnath 1998). Where institutionalized

discrimination is embedded within the service delivery for example where segregated services are provided leading to further stigmatization and disablement with disabled people having little or no choice but to attend them which can be both educationally and socially disabling (Paterson et al, 2006 citing Oliver and Barnes 1998; Shaw et al, 1998; Watson et al, 1999). Illich, (1976) considers this isolation of the disabled person into a professional environment as moral degradation as he believes that society should instead be equipped with the attitudes, tools and discipline to increase its social tolerance and integration of the individual.

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The process of reforming disability development in the State though well intentioned is fraught with complications mainly due to a lack of adequate research data that provides a picture of what it means to be disabled in T&T.

1.5.4 Power Relations Social structures in terms of power, resources and status, play an important role in creating and legitimizing meaning by the intertwining relationships of the social threads and historical connections. It is these entanglements which bolster the particular meanings ascribed to disability and Sharpe et al 2000 posits that they makes up the constitution of power relations and reinforces individual biography within the domain of State institutional order. Power is referred to in this situation as the amalgam of forces, practices, processes and relations, all of which spin out along the precarious threads of society and space. IBID , 2000:20. Foucault

theorises that power is everywhere, but it is not an institution, structure or possession, but it is intrinsically linked to knowledge whereby individuals can be monitored, manipulated and controlled (Sheridan 1980). Power is played out in the modernization arena on a global scale as countries similar to T&T aspire to achieve developed country status through the process of development in keeping with the developmental models of Western Countries who were the first to modernize (Esteva, 1992). Here power is a means to achieving profound change as a way of having control over situations and is what is described by Rowlands, 1995 as power over i.e. having power and control over others with the consequence that the other party loses their power. This development process centralizes power with the

enactments of International Conventions and Constitutions e.g. the CRPD, which developing countries are expected to implement to accomplish developed country

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status. Western policy development is based on the theory of modernization as expressed by Friberg and Hettne cited in Allen 1999 that for all the practical purposes modernizations which are equivalent to the westernization, in view of the fact that the western countries first of all reach towards the modernity and therefore they have served as a model for the rest part of the world. In the disability arena in T&T the State is the biggest player in the matrix of power as it is in a position to exercise disproportionate control over the individuals thereby leading to social control. Policies can be implemented and justified as being done so in keeping with modernization developments which are meant to be aspiration. As State appointed officials are the guardians of the nations precious economic resources and they are able to determine how the finances are distributed, and the social stratification of power means that for individuals with impairments to qualify for welfare they are assessed, categorized and registered as disabled, even though the National Policy states that; individuals with different forms of disabilities are basically the agents for their own destinies and they are the equivalent citizens for the nation to which they belong. They have all the very same rights as well as responsibilities and they should enjoy a very equal level of accessibility when it comes to the services which are available for each and every citizen who has no disability at all (T&T National Policy 2005). The State by virtue of its policy structures which are embedded in the ideology of the personal tragedy/charity model of disability and development discourse exerts its power over the individuals, with many policies and action plans developed along the lines of doing things for and on behalf of disabled people thereby creating a level of dependency. The authority of professional dominance afforded to medical

professionals enables them to claim power and exercise control over the population

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because of their wealth of knowledge. This power is exerted not only by way of the bureaucratic State structures, but via the medicalised assessments and identification where they categorises individuals, marks them, give them their own individuality, attaches them to their own identity, imposes a law of truth on them which they must recognise and which others must recognize in them at the very same time. This is basically a form of power which makes individuals subjects. This gives a form of power which also subject and makes subjects at the same time (Foucault 1992, p. 212). The autonomy is lost to the medical professionals while at the same time attribute pathology and identity to the individual that comes with the recognition of their entitlement to certain rights, duties, excuses, and social stigma (Killeen, 1976). This denial of autonomy and empowerment excludes them from being be a part of the planning process, and being allowed to make valued judgments, and decisions for themselves (Priestley 1999, Oliver 1996). Thereby creating the illusion that disabled people are unable to take control and make decisions for them or to choose what assistance they need in order to enable them to have the quality of life that they desire. Unequal assimilation of groups e.g. disabled into societys

stratification system creates adversarial relations borne out of unequal distribution of power and resources (Khan). Mutual inter-dependence is part of everyday life, therefore the dependency of disabled people on others is not unexpected, but it is the level of the embodiment of that dependence which has an intrinsic bearing on their lives. Medical professionals are dependent on the disabled population because they are the clients who provide the opportunities for the economic wellbeing and job satisfaction of the professionals.

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Traditional beliefs and practices also lend themselves to the development of deep relationships between medical practitioners and those with ill health/impairment as individuals have emotionally vested trust in those they see as having legitimate power over them. Killeen, 1976 states that medicine defines what is normal, proper, or desirable and that it has the power to legitimize a persons illness, to label someone as ill or disabled even if they do not accept the label, and to dismiss another persons with pain, impairment or disability as a malingerer. This is

illustrative of the moral powers within the field of medicine which is quite similar to that of religion in that the church has the power to declare what is holy and right and who is considered a sinner. Having said that there are differences as medical interventions are often also based on scientific foundations except where religious doctrines intertwine. Medical practices are so professionally organized that they function as a principal operation undermining the ability and freedom of disabled individuals to face up to their lived realities, to express their own morals and values, and to accept their impairment and pain. An important thing to consider at this point is that the level of poverty is also an important factor when it comes to strength and power. As such, poverty is highly correlated with social exclusion, marginalisation, vulnerability, powerlessness, isolation and other economic, political, social and cultural dimensions of depravation. This has resulted from limited or no access for the very basic infrastructure and services, and is further compounded by lack of access to land for the people, credit, technology and institutions. Poverty is really not just a matter of incomes which is too low for meeting the basic requirements of someones survival. This is the most important symptom which is for imbedded structural imbalances, these are the ones which are manifested themselves in all the domains of the overall human existence.

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Unequal dependence is compounded when State policies that provide welfare benefits conceptualized in the context of tackling institutionalized disabling environments, neglect to take into account wider issues. The State is then complicit in encouraging dependence and possible financial freedom of disabled people (Oliver and Barnes 1998), while the medical professionals are able to benefit financially by their provisions of specialized disability services. Osbourne, 1997 however argues that the States power position is justified as it is done for the benefit of the wider society. Policy is successful in so far as it augments the population. This is what policy is for; it designates the ideal of maximizing what might be called the quantitative power of the state (IBID 1997:178). He argues that the power being exercised is positive power as it is justified as being beneficial for the betterment of the population. But Ramnath, 1998 shows the power politics may be more personal as evidenced when Trinidad and Tobago in the 1970s overhauled their State health policies. While it was done to benefit wider society there was also an underlying motive as explained by Ramnath, (1998) who stated that the adhoc, symbolic, showball effect policy process that ensured, also reflected the need for power, higher status, popularity, and electability by Williams personally and his ruling party, though the power and status argument can also apply to the medical academics now sensing their opportunity for a slice of the countrys largesse. Thereby contradicting Osbournes argument which naively omits to ta ke into account personal/political power motives or situations where the knowledge upon which the policies are developed is based on western trajectory and Eurocentric thought, nor where economic logic behind the State decisions may prove to be risky long term to the population they are intended to service. The belief that the

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beneficiaries of services are passive recipients who need not be involved in the process that objectifies them, and ignores their lived experiences and their voice, is grounded in the development discourse which facilitates the retention of power by those in power. To redress the balance of power the United Nations have proposed a TwinTrack approach to disability and development (figure 4) with the overarching objective of mainstreaming and targeting support to facilitate the inclusion of disabled people in all the aspects of social development as well as economic development. Power reaches to a state where grain of individuals, touches their bodies and they inserts itself in their actions as well their attitudes, all of their discourse, learning processes and at same time their everyday lives too (Foucault, 1980, p. 19). Figure 4

Source: CBM This twin track approach calls for disabled people to have a greater activist role and to change the power dynamics as it relations to their contribution because where power, oppression, whether unintentional or not, and resistance are linked, dominant inequality discourses are constructed and played out. Barton, (2003) suggests one way of shifting the power and effecting increased inclusion will be to

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de-categorise disabled people, to recognize the varied diversity in society, and to facilitate their participation and empowerment in the socio-economic, cultural and political social processes. Categorisation reinforces the system where the social control of the population by legitimizing the arrangements thus creating a situation where many do not fit it, and deemed to be unfit often leading them to live a life under medical supervision (Killeen, 1976, p. 10). Medical professionals maintain power

relationships by virtue of their roles in the determining of welfare services, and this in turn legitimizes their positions of power. How does this relationship of power fit into the objectives of the national policy in relation to say the equal enjoyment of all human rights or the elimination of marginalization and discrimination of disabled people when the process is elitist and based on one persons analysis of another persons body against a perceived biological social norm? Anundson, (2000)

suggests that concepts of normal function are neither a scientific measure not objectives, but it is a phrase used to preserve the dominant classs position of power. He notes the disadvantage and discrimination faced by those classified as abnormal are based on their biological functioning but by societys judgment about their biological difference. Empowerment will increase the influence of relatively powerless sectors of society, this is to a level commensurate with the benefits traditionally enjoyed by their non-disabled counterparts (Hahn 2002, p.181), and using Frieres theory on development and empowerment it will mean that they will no longer be the repository upon which knowledge is placed but that they will be afforded an active role in solving their own problems.

Disability CHAPTER 3: IDENTITY 3.1 Introduction

49

In this chapter the literature that speaks to the theories and concepts which inform disability identity as presented in the analysis chapters are presented. It

examines homogeneous view of disability and places in the context of how identity is conceived, experienced and articulated and the politics of disability which affects different people in different ways. The chapter explores social relationships and their complexity within the disability discourse, to make it theoretically consistent with the experiences of the life experiences of disabled people. Heterogeneous experiences of disabled people

from differing backgrounds are examined and addresses in relation to beliefs and value based systems and tolerance and acceptance of difference. Showing how disability is not experienced the same way for everyone. Critique its own modernist dualist heritage and position the impaired the body as a part of the domain of the history, meanings and at the same time culture and this do not in a form of medicine would have it and a historical, purely natural and pre-social object (Paterson et al, 2006). In this chapter the facts which are going to be explored are claiming disability identity, disability as a political identity, sexuality and disability, language and naming, spirituality, religion, faith and belief and in the end folklore will be the part of discusssion.

3.2

Claiming Disability Identity The self is a complex construct and identities are all parts of the self-

interacting with the range of other sectionalities e.g. race, gender and class (Stryker,

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2002). Stryker, (2002) describes identities as internalized designations which exist as part of being a social object within a structured relationship with the option of identity salience, meaning that individuals organize, and invoke a particular identity within diverse situations. So in forming and claiming identities it is about the

categorizations, preferentiality and the discursive construction of difference i.e. being aligned in relation to some other thing, with the differences being identified. Michel Foucault refers to identity as a way of being reflective, identifying oneself and claiming membership to a collective group. In addition, there is also a school of thought used by symbolic interactionist that identity is derived from the logical arguments between ones internal self and external self perception. In the past identities were much more rigid due to power structures, but it is now much easier for individuals to make their own decisions as to who they are, and to choose their own identity within a social context. However the historical legacy that capitalism has on the representations of disabled people as being flawed has influenced cultural representations in the way in which disability identity is constructed (Barnes, 1992). Disabled identity is still equated to helpless/hopeless victims for those considered to be heroes for adjusting to their impairments. In addition it is also influenced by the medical professionals whose work is based on the ideology that disabled people are flawed individuals who are in need of medical interventions to fix them. This external attribution of identity is derived when the definition of self is given by the authority figure e.g. the medical professional and the person identifying with that attribute in the way that they position themselves in relation to others. The labelling is also a way of giving the authority figure the power to provide treatment whether wanted or not (Jenkins, 1996).

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There is no unitary homogenous identity for disabled people but instead it is organized by way of similarities as people seek to make meaning of themselves in the world in the context of having multiple descriptors. By claiming disability it is accepting and embracing identification with a culture that has experiences of oppression, disempowerment and stigmatization because it is seen as a spoiled identity and deviating from the norm (Goffman, 1990). In addition, it identifying with an oppressed collective where research shows such socio-economic and environmental factors adversely affects disabled people over non-disabled people (Barnes, 1991). In considering the many social relationships individuals encounter it is possible to dip in and out of a number of identities and this is evident amongst disabled people as many choose not to use disability identity as their sole identity, but instead manoeuvre between multiple identities (Johnstone, 2004). (1990) makes the point that; Identities are often personal and political projects in which we participate, empowered to a greater or lesser extent by resources of experience and ability, culture and social organization, This is showing that the politics of personal identity and that of collective group identity are linked and that it is possible to have a visible identity as well as an invisible identity dependent on circumstances. Throughout history the dominant discourse on disability as an identity has been viewed negatively because of the notion that those with impairments are in need to medical intervention to repair or eradicate their problem, because of this, claiming disability identity can be stigmatizing causing undue hardship and suffering. A consequence of the stigmatization is that some individuals will choose to divert Calhoun,

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attention away from their impairment and deny and reject the disability identity (Johnstone 2004). However a shift has been emerging in response to the delimiting notions of disability with disabled people reclaiming their bodies and experiencing disability identity as a source of pride and personal enrichment (Fleisher and Zames 2001) and actively choosing to place disability at the forefront of their identity. As stated by Elizabeth Grosz, a dichotomous thinking necessarily hierarchies and ranks the two polarized terms so that one becomes the privileged term and the other its suppressed, subordinated, negative counterpart. That is, one identity is privileged and the other devalued by denial of the primary term, which becomes the subordinated term and the body becomes identified as being distinct from the privileged term. In the study by Lawson, (2001) special education for disabled children is seen by many as being a major factor in the creation of a negative, second-class identity. It has been suggested in this particular study that disability is increasingly seen as some positive kind of cultural identity. As a consequent to that, inclusively with the education also has the potential for assimilating the disabled children and subsuming the promotion of disabled identity under the pervasive concept of diversity. Due to all this the special schools could, which are under the control of all of these disabled people have become as sites for the sake of promotion of disability as some positive cultural identity and offer disabled children and their parents a genuine choice of education. A number of terms are there for defining people with impairments. Some of them are crippled, spastic, invalid and even handicapped; the very common factor is that all of these people are almost considered as a property for people who are not disabled themselves. Some really good initiatives just as the UK disabled peoples

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movement are the steps which have been resulting in people with these impairments as a challenging one for all of those terms and this has also adopted the use of the better term which is disabled person as the more preferred one. As a consequence to all this for defining someone as a disabled person is the effort for asserting the adherence towards the view that an individuals identity is that of a disabled person and it is no more as a person with a disability at all. In the same way for defining someone as disabled person is recognition of the objectification of disabled people and also a declaration of an individuals membership of a social group which is something which is going to automatically oppress them through some of the social structure, institutional practices as well as individual attitudes at the same time. Claiming disability identity also comes with other associated identities based on life experiences and societal reactions to disability. For example disabled people are often viewed with empathy and considered to be survivors having faced some sort of adversity. There is also the seen as tolerant because of their endurance, and as sensitive because of they are aware of their own struggles for equality (Cook, 2001 in Johnstone, 2004) or dependent because of the state welfare and benefit structures and policies which produces dependency. Disabled people are encouraged to play down their impairment because it has been said that in order to recognize the person you have to overlook the disability. It is worth mentioning that identity is intertwined with the characteristics of power and powerlessness and is influenced by symbolic interactionism which is the use of symbols and language that goes beyond words to enable comprehension and communication. Symbolism shows the everyday interactions of individuals and is used a particular culture in so far as the way the self is developed, viewed and

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presented in relation to the values communicated in the society (Burkitt and Tester, 1996). Blumer, (1986) that meaning is created and interpreted and acted upon through interactions with others and that these meanings are handled in, and modified through, an interpretative process used by the person in dealing with the things he encounters (p. 2). This is particularly important point when considering vulnerable individuals e.g. those with intellectual disabilities. How do they communicate their internal conversations to an external audience if the language is different? Too often

assumptions are made about the meanings ascribed by others especially when individuals are not able to express themselves through words. Symbols and

gestures are a way of communicating and given in the context of a social situation definition is created and interactions through shared meaning. However, the

meanings of the symbols and gestures may vary depending on the time and space causing communication misunderstandings. Therefore shared understanding

amongst members who share an identity is limited. Schultz et al, (1973) says that meaning will only be recognised as finite and be replaced by another when something causes us to view the world through a new reality (p. 231).

3.3

Disability as a Political Identity The differing concepts of disability for example as a spoiled identity or a

empowering identity places the disabled person in a position where they may have both a private and public identity experience (Albrecht et al, 2001) and this can be problematic for the individual especially if they are politically active. For example, having a public disability identity can signify inferiority as it represents a shameful

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condition to be denied or hidden if present and negotiated within the sanctuary of ones family and person space (Albrecht et al, 2001, p.1) based on that experience disability as a public identity it will be given the least prominence in preference to another valued identity. In the context of disability politics this is further causing problems because upon entering that socio-political arena it comes with it the acceptance and commitment of openly owning the disability identity and claiming it as a source of pride and empowerment a symbol of enriched self-identity and selfworth and a central force coalescing a community intent on extolling the fundamental values of life, human rights, citizenship and a celebration of difference (Albrecht et al, 2001, pp. 1-2). Stryker 2002:62 makes the point that relationships are formed and based on identifying with, being and acting in a particular way and that one is committed to being that kind of person. The energized emergence of the movement globally in particular around the fight for acceptance of the social model, and general equality of opportunity for disabled people has made it more acceptable to lay claims to the socio-political disability identity. This has led to increased lobbying for national recognition and the emergence of disability studies in academia, and to individual and collective empowerment (Campbell and Oliver, 1996). Resist dominating processes by

adopting the positioning of the perceived oppressor by coming together as a united force. Claiming a politicized identity is based on the cultural creation of challenging the traditional notions by asserting ones right to equality of opportunity and to be a full citizen belonging to the mainstream (Stacey, 1992). It is also a source of

empowerment as it affords the opportunity to claim an identity around a collective purpose by being involved in the process of social change, having a say and holding

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accountable those with responsibility for addressing disabling structures in society (Oliver and Barnes, 1998). Paulo Freire theory on empowerment and social transformation is particularly relevant in that the disabled person is able to identify the issues which effect their community and devise strategies for social action what are appropriate to meet the needs of the group. The political coming-out and personal ownership of a shared ide ntity offers a sense of belonging to a social system or community which (Smithies et al 1990:3 defines as people with a basis of common interest and network of personal interaction, grouped either on the basis of locality or on a specific shared concern or both. An environment of group identity and connectedness while building a coalition of mutual culture and empowerment working for social change (Gilson et al, 1997) and engender a sense of unity, comradely and common purpose. The move to the self organisations have prompted the consistently mounting numbers of the disabled individuals for adopting a shared kind of political identity and have a common voice in addressing the societal barriers they face (Bynoe, Barnes, Oliver 1991:12). This commonality is often referred to as a disability culture (Fleisher and Zames, 2001). Affording them power in what Rowlands, 1995 refers to as power to inspire and motivate themselves and others; power with sharing power with others and power within having internal strength and self-esteem. Disabled peoples organisations legitimize the notion of a disabled cultural identity (Barnes and Mercer, 2001). There is also the issue of the paradoxes around claiming a group identity based on having experiences of shared oppression for example where disability is

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not a permanent state of being for the individual and their involvement in the group is only temporary in nature. Not only does it challenge the notions that disabled people are lacking and incapable, but it also affords them the position to be able to establish themselves as the experts on issues relating to disability, rather than relying on the views of the professionals. Smithies and Adams, (1993) we are all experts in our own health. However power dynamics often means that personal life expertise is not always acknowledged for the benefit it provides this goes back to Paulo Freires assertions that people do not only need knowledge to be passed on to them, but that they are also able to produce knowledge, therefore they are objects as well of subjects of knowledge(p. 59). It must not be assumed thought that there is homogeneity within the movement because of the shared interests because there maybe differences in values and experiences. Bartholomew and Mayer (1992) postulate that in capitalist societies movements there are many complexities because, it is an amalgamation of diverse people with multiple identities and varying agendas. Increasing the fragmentation found among the actors, different fields and forms of action as struggling around the citizenship and cultural as well as social issues. This also takes the codes of life into account which become differentiated. Movement is something continually stricken with the needs of producing and reproducing the unity and solidarity in the face of diversity and tensions (p. 142). Human interaction is generally done on a number of levels i.e. individual as part of a particular group and as citizens of the State (Holder and Corntassel, 2002). Some of what has recently been included in disability categorisations in the western world e.g. HIV/AIDS is ambivalent, so it is clear that it is useful to have the label in

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order to qualify for and receive welfare assistance but it comes with it the disability label. Not to mention it is a platform for the building of social relationships and friendships. It is a place where consciousness is raised as members mobilise to regain control of their own action. In identifying with the collective individuals

experience a psychological bonding as they reflect and reclaim the rights of defining themselves adjacent to the criteria of identifications which are determined by the anonymous power as well as systems of regulations that actually penetrate the area of internal nature (Melucci 1989, p. 61 in Shakespeare, 1996, p. 8). The minority group approach in claiming a political identity is about selfdetermination, power, identity politics, and social change all of which reinforces the constitution of disability. It is about taking a stance making a public statement about ones social positioning and affirming a collective power, but this identification with a marginalized minority group comes with its own set of negativity. In the dynamics of claiming a stance within disability politics is the notion of homogeneity within the movement and assumptions that values, experiences and interests among the members will be similar (Heathcote, 1996). There is also the misconception that by belonging to the movement means that disability is a fixed characteristic, even though identity is a fluid concept derived from thoughts, words, deeds and societys reactions to them (Markell, 2003). By making claims to a static disability identity it denounces claims to other intersectional identities and the politics that goes along with the vulnerabilities of the other identities. The idea that disability politics is a bandwagon for extremists activists who are merely trying to make the world see their own point of view or who are unable to

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accept their impairment limitations is a deterrent to being seeing as part of the collective movement. For example experiences of a heightened sense of vulnerability born out of fear, social rejection, negative reactions and expectations and the belief that disability is an invalidating role. Or use disability as a guide for the politicized motives with the wider political arena (Fleisher and Zames, 2001). Choosing normalization and rejecting the group identity as a way of avoiding ostracism because of the notion that disabled people are unfortunate victims who must strive towards normalization (Watson, 2002). As Shakespeare and Watson, (2001) has enquired; do they represent the wide range of disability issues, and what about those individuals with impairments who do not subscribe to the disability identity?

3.4

Folklore The term folklore is usually used for an unwritten literature (stories and

proverbs and riddles and songs) of a culture. The very ancient history of teratology is not the source for teaching when it comes to much understanding with respect to origin, prevention, or treatment of present at birth malformation; but this is what tells a great deal regarding the human minds and the reactions for various unexplained phenomenon. In a situation where an abnormal child is born in a family, then the parents are asked for clarifying the reason behind the birth to the related tribe. Birth of such child is considered as a situation which is a result of some sin done previously by the parent and the child is actually a punishment (Warkany in Eberle, 1988).

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Interpretations and beliefs of disability are displayed in folklore and often they are used as a method to relay advice, instruction or a moral view on everyday life issues. Folklores are sometimes considered to be an outstanding thing to be talk about but this is not always the case. There are many which still strict believers of the ideology are and this is how the term is still listened at different occasions.

3.5

Sexuality and Disability Disability and sex are usually not spoken about and it is a common perception

that disabled people are asexual and are not capable of experiencing life as a sexual being (Shakespeare et al 1996). Arnade and Hafner, (2005) found that it was

difficult for disabled women in industrialised and developing countries to become married and have children. Their review of a number of studies showed that two thirds of men with mobility impairments were married compared to only half of women with similar impairments, and that women who became disabled after being married were more likely to be divorced when compared to men. Sex which is a vehicle for expression and a source of pleasure among disabled people is ignored and silenced even though according to Tepper, (2000) that sexual pleasure is particularly powerful in making one feel alive. It is a powerful anecdote to pain, both physically and emotional and that there is scientific research to back this up (Whipple et al, 1996). Sex is viewed as a mechanism for

reproduction and it is for those who are physically fit and well and able to enjoy full citizenship, thereby excluding disabled people as unsuitable candidates for either reproduction or sexual pleasure (Tepper, 2000). Cultural construction, such as the completely unrealistic stress and emphasis over physical beauties or strength is taken as an index of being the most desirable.

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Practical barriers of finding the most eligible partner combines for making the aim of sexual self-validation seem to be better given-up in such cases (Comfort, 1978, p. 3). The notion that disabled people is unable to participate fully in society by way of pro-creation and economic activity which is deemed to be crucial to social survival. The meaning of embodiment and its social requirements are neglected, as disabled people are assumed to be biologically unproductive. A social worker addressing an audience at disability workshops said that the disabled are no different than the normal totally able person as it related to human sexuality Negative attitudes towards sex for pleasure have its roots in Greek philosophy which saw pleasures of the flesh as being the lowest level of human consciousness because as quoted by (Kinsey et al, 1948, p.7 in Tepper, 2000) copulation lowered a man to the frenzied passions characteristic of beasts. This is further compounded by those of the church which consider sin for pleasure as a sin. However it later became viewed as a medical problem when it was considered that non-reproductive sexual activity was a sign of sickness as it related to premarital and extra marital sex. Socio-political movements have led to the liberation of many restrictive notions of sexuality for non-disabled people; however there is still the assumption that disabled people are asexual. This is mainly due to the focus on reproductive sex over

pleasurable sex, and the misguided assumption that disabled people are not capable of experiencing sexual pleasure. Tepper, (2000) also makes the argument that

medical sciences makes the distinction between orgasmic disorder in non-disabled people and disabled people, with the view that the disorder is a given for some disabled people. In unearthing some of the cultural specificities there were issues of finding out what are the hidden, difficult cultural silences that are not normally talked about due

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to shame and embarrassment. One of these silences which featured in the data is about sex and disabled person even though many for example Fleisher and Zames (2001) have called for the acknowledgement of sexuality and disability Incest appears to be common in a number of Caribbean countries with fathers believing they have the first option to introduce their daughters for sex (Chuck 1994, p. 7). The balance of power is with the medical professionals who are rarely questioned. They are obeyed and revered as though they are demi-gods. This may be due to the Myths that those with intellectual disabilities are unable to be sexually responsible because they lack social judgements (DeLoach, 1994). That disabled women should be grateful for a sexual relationship (OTolle and Bregante, 1992).

3.6

Language and Naming Language is a powerful tool in the framing of disability experiences, and state

definitions impact on the way in which disability is constructed (Finkelstein, 1991) as the language used by the state in the form of definitions is used to determine eligibility for services and welfare. Disabling language is that which uses demeaning words or phrases in reference to a disabled person; uses nouns instead of adjectives to describe disable people and one which perpetuates negative stereotypes and myths about disabled people (Patterson and Witten, 1987). Although the connotations are not fixed but as it is repeated and accepted over time to the extent that it becomes considered to be the given absolute instead of being considered to be a product of language. Cook, (1992) attitudes towards disable people is a complex dependent on situational circumstances as some

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disabilities are viewed positively while others are evaluated negatively based on public perception of acceptability. associated with the disability. In Trinidad and Tobago language based on impairments with some terminology being derogatory depending on the circumstances in which they are used. Throughout the globe in history, there are various terminologies as well as meanings, which are ascribed or different kinds of human variations which are known in the contemporary westernised countries in the form of disabilities (Linton) The rights movement claim that language is one of the mechanisms used to keep minority groups in place (Gumperz 1982) so in claiming disability identity they have re-analysed the functions of the qualities of disability labelling as was done in 1651 by Thomas Hobbes the English philosopher known for his work on social contract. When he was setting his own social identity he noted that truth consists in the form of right ordering of names in the affirmations, an individual which seeks accurate truth has need to remember what every name he uses stands for; and to place it accordingly (Zola, 1993). By using the term disabled person it focuses on the primacy of the impairment in relation to the other defining characteristics. This is referred to by Scott-Hill People react depending on the stigmatisation

2004:90 as the master identity through which other identities are negotiated. Person first ideology Michalko, (2000), personhood comes first ahead of the impairment person with disabilities vs. disabled person. The individual is the

subject implying disability is secondary to the persons identity (p. 10). Labelling theory shows how the identity attribution impacts on how the individual is positioned and viewed in relation to others. Labels implying functional

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loss and lack of worth perpetuate and legitimise patronising behaviours (Barton, 1996). The use of appropriate language is important in building respectful relationships because the choice of language used has a direct impact on the way in which disability is perceived. Negative labelling and devaluing inappropriate

expressions persists in the construction and meaning attached to disability and reinforces the way in which society contextualises disability. The language and terminology used to describe disability has been evolving, Awareness of the power of words to condition attitudes (Zola, 1993, p. 167) In looking at the domain structure in regards to the definition of disability in relation to other local terminology within the domain, and their semantic relationships, throughout the world disabled community groups have been attempting to take control of the language used to describe disability and disabled people by redefining the meanings given to existing words and also creating new words. There are still a number of schools of thought on what terminology is considered acceptable, appropriate and non-offensive. Evaluative connotations in language used to emphasise the biological difference e.g. differently able. Labelling has two separate implications i.e. co notational and associational which Zola 1993 explains that by labelling an individual as ill, their activities become directed related to and explained in relation to their illness and it becomes their indelible characteristic invalidating their other traits, and by the disability and the person being equated so that the person is referred to by their disability e.g. the amputee. Linton, (1998) who said that the prefix dis represents lack of, separation from, or oppression to and that it creates a barrier. But even though it is said that

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negative language stigmatizes and should be challenged, by merely changing the language does not automatically mean a change in behaviour. What is achieved by replacing one label with another when the experiences of the disabled individual remain the same? What is does is to add another dimension to be untangled in the construct of disability. Much has been debated on the terms used e.g. people with disabilities as used in the CRPD which is based on a person first approach (Guernsey et al, 2006) and the term disabled people which Oliver 1990 argues is more appropriate because the disability is an essential part of the person and therefore the person should not be separated from their disability. Cultural behaviour looks and the quest for normalization and behavioural modifications. This is for achieving the best quality of life that also mirrors the life of a non-disabled person at the same time. World Disability Report negative imagery, and language, stereotypes and stigma (with deep historic roots), persists for people with disabilities around the world (WHO and World Bank, 2001, p.06). There are different traditional methods when it comes to looking at disabled persons in so many different cultures; all of these are the cultures in which disabilities are seen as a divine punishment for the disability conferring special kind of powers. Mostly these disabilities are linked with issues which are such as helplessness, charity, misfortune, and so on. Whereas the medical model, when it comes to looking at disabled persons, which is developed in West in particular, during the era of industrialization, has been seeing the disability as a result of physical or functional abnormality. It is something really very concerned with classification of different kind of disabilities and quantifying as well as labelling them. As a consequence to that, in the medical model these disabled individuals are

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persons are mainly seen as sick ones or as patients, who are I a need of some amount of intervention (Deepak, 2001). There are numerous religious traditions in South Asia. Having different perspectives with respect to the religion the individual belong to. The Hindu epic famous Ramayan (Parasher, 1999) has deeply affected and also i nfluenced till a very evident extent that the cultures in South Asia with their impacts on the people as far away as Cambodia, Indonesia, Thailand and Vietnam (Deepak, 2001). Coming to the context of disability, in the religious epic Ramayan there are different references for the disabled persons. In the epic, story of Shravan Kumar, this character has parents who are blind and the son is taking a very good care of the his blind parents, both are completely dependent upon their son. The next example is Manthara, the hunchbacked maidservant of the queen Kekayi, this is the guy who has poisoned the heart of queen against her step son. The other character is where Surpanakha who is beautiful sister of rival king Ravana, and is attracted by hero brothers, Ram and Laskman, and to refuse her unrelenting advances of love, this is where Lakshman cuts her nose, rendering her disable. This became a symbol in the religion that the disabled women have no right for any sort of sexual pleasure at all (Deepak, 2001). The West Indian population has a highly expressive and motive form of dialectic English language. This section is not intended to be a comprehensive study of onomastics which is the study of names and the origins of names, but instead outlines the socio-linguistics in relation to the giving of names and the use of names as they pertain to disabilities. Names are given as unique identifiers and the process of naming is carried out in a way which is authoritative in so far as the person giving

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the name is in a privileged position as they often do not need to consult with the one being named. Names serve a practical function and Lyons, (1977), says that names have two characteristic functions vocative and refential meaning that they are used to address and get the attention of the individual, and to give attention to the existence or relevance of the person named (p.216). People first vocabulary where the emphasis is on the identification of the person first and that their impairment is secondary to whom they are. It is used as a means to detract the attention away from the persons disability.

3.7

Spirituality, Religion, Faith and Belief Before the fourteenth century there was no common name for what is

considered to be doctor, instead there were healers ranging from priests of the gods, lawgivers, magicians, mediums, barber-pharmacists or scientific advisers (Killeen, 1976). Healing and problems related to the physical and mental health is one of the most important aspects which is in practice and art of the Obeah. The manifestations of a fix one is *usually some medical symptom which is physical or mental, through which normal or trained medical professionals may find it really difficult to diagnose or to be treated (McCartney, 1976). There are different traditional methods when it comes to looking at disabled persons in so many different cultures; all of these are the cultures in which disabilities are seen as a divine punishment for the disability conferring special kind of powers. Mostly these link disabilities with issues such as helplessness, charity, misfortune, and so on. Whereas the medical model which is for looking at the

disabled person developed in West most especially for the duration of the era of

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industrialization, looks for disability as a result of various different physical or functional abnormalities. It is seen that the social history of attitudes for illness is something which has shown that there is a very significant amount of relation with levels of socio-political equality and the cultural mechanisms which are able to stabilise the population play a significant role in the way people respond to their health (Killeen, 1976). He supports a holistic approach to health that focuses on quality of life and takes into account the political and moral structures within the State. Attentiveness to the spiritual habits of the heart which become a way of life with strong beliefs need to be taken into context and understood for the extent of the role they play in the pursuit of meaning. Increasing there has been a synergizing of scientific based bio-medical understanding of health and those based on faith, religion and spirituality (Barnes et al, 2000). There are so many religions with entirely different beliefs sets. Some are highly dependent on the superstitious powers and thoughts and some are completely relaying on the practicality and rationality. Religion as a barrier to bio-medical care for example Jehovahs witnesses who refuse medical treatment in the form of blood products relying instead on their religious conviction because giving in to bio-medical treatment will be seen as a lack of faith (Barnes et al, 2000). Studies have shown that spirituality which is a broader concept of religion plays an integral role in the lives of many with ill health and impairments. It also shows that racial differences exist in the role of spirituality in the self management of chronic ill health, and that it goes beyond immediate self awareness by facilitating connectedness of self, others, nature with a belief in a power greater than self (Harvey and Silverman, 2007). For the purposes of this

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research, references to spirituality are those directly linked to religion/faith practices and rituals. Ritualised healing and magic has traditionally been an important aspect of the function of medicine and to some extent this continues up to now in what is known as the placebo effect, where an intervention is given by the medical professional which has the desired effect of the individual considering themselves to be pleased with the outcome (Killeen, 1976). Many traditional/folk medical practices and ritualized healing is grounded in spirituality were it is encouraged to gain strength and acceptance is through prayer. It promotes positivity by providing meaning to the experience and a sense of purpose and direction; evoking positive emotions which offer respite and relief from the day to day struggles; the rituals offer support, care and harmony and auger a sense of connectedness; and offers behavioural structure and guidance outlining what is acceptable or not (Koenig, 2001). In seeking to reclaim an identity which is separate and apart from that imposed at the time of colonialisation many have found solice in their historical religions, and have a desire to embrace the rituals and ceremonial practices in favour of that of the Christian syncretism (Henry, 2001). Dr McCartney 1976 in his research on the psycho-social aspects of obeah in the Bahamas found that many local Bahamians often sought out the traditional healer who may or may not be an obeah practitioner prior to consulting with a medical practitioner. Magico-religious practices rituals and symbolism are practiced in a number of cultures including T&T. Spiritual causation plays a significant part in their understanding and perceptions of their own experiences of disability. Exorcising, healing, and curing with the belief that the person will be returned to normality and enjoy a social life which is self-satisfying and fulfilling.

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Research on African American elders in the USA found that their beliefs and faith was focused around God as the healer, and the enabler of the medical practitioners, their faith in God, using prayer as a mediator, using spirituality as a psychological and physiological coping mechanism, combining the use of conventional medicines in conjunction with spiritual/traditional practices (Harvey and Silverman 2007). Tuck et al, (2001) in their sample group found that in persons living with HIV their enhanced quality of life and their effective coping strategies were all directly related to spirituality and they conclude that it should be considered as a variable in understanding the psychosocial factors and quality of life of persons living with HIV. Fryback and Reinert, (1999) who also carried out research in HIV with a small sample group thought spirituality was not a major study variable, also found that where spiritual interventions were not offered to patients with HIV, they sort it out from their cultural communities and that it was a major contributor to their health and well-being by moving them on from feelings of hopelessness and meaningfulness (in Tuck et al, 2001). Medical-miracle interventions and rituals have had worldwide appeal where spiritual healers fill sports stadia and one does not have to physically participate in the ritual in order to be initiated into the process. Those attending the ritualized healing event as spectators are be extension receiving the healing/blessing in so far as they are amongst people with a shared identity who are all trying to make meaning of their experiences. It is interesting to note that Pentecostal/Charismatic movements, although often involved in activities such as faith healing, seem very much concerned with belief-particularly in their Western European and North American manifestations. In

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Asia and Latin America, though, all of these movements also have preoccupied with a set of various different beliefs, and this is what often put more and more emphasis on the healing power of religious expression (Dempsey, 1999, p. 154). It has been recently conducted by Benny Hinn that the healing campaign in the India which has drawn a huge crowd, almost the largest than ever before. People in which has come for various diverse reasons, there were some for only witnessing this historical gathering, there were some for the sake of healing, there were even some out due to curiosity, and some were there for getting answers to prayer and set of miracles. There were even more that 1.3 million who have actually attended the first night services; other than that there were 1.5 million which have joined by the 2nd night. The crowd swelled to 2 million by the third and final service, making the final nights services the largest recorded in history for a healing service (CBN.com 2013). In understanding the meaning of disability addressing it through the eyes of a sceptical critic of spiritual traditional practices will be misplaced because of the strong culture of blending spiritual/traditional practices with bio-medical interventions. Faith and belief that God will direct them through their circumstances, cultural conscious and unconscious structures that give meaning to life experiences which may blend deeply held spiritual and bio-medical knowledge and they may not be considered as separate interventions. Even within the medical profession the lines between religion and psychosocial disabilities merge with some believing that they are caused by spirit possession (Hutchinson et al, 1999). By maintaining these seemingly peculiar traditions it is an affirmation to the so called European superiority of the inferiority and backwardness and seemingly

Disability laxitude in keeping ahead of developments and modernity.

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This relationship of

tradition and /or alternative experiences is, however modernity is seen as the validating factor and the answer to the opposing ideology based on tradition. Western dominant ideology reinforces the view that traditional value systems are uncivilized. De-contextualized understandings of religion that focus solely on established or projected belief systems and creeds at the expense of less-than-tidy practices forfeit vital complexities and, as this article demonstrates, notions of boundaries and identities that are more permeable than rigid (Dempsey, 1999, p. 175). Individuals who act strangely outside of the socially accepted norm are viewed with suspicion until their behaviour can be explained or named by a healer who may or may not hold formal medical authority. Upon examination they are placed into a recognized category where they can be avoided, cared for, pampered, repressed, morally exonerated or expelled as part of the cultural responses and social prescription to the perceived deviance. The individual then performs either the sick role which is steeped in cultural tradition or the one based on bureaucratic state organization. Spirituality and religion can play a key role for making life of disabled people, and their families easier.

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Disability Barnes, C., and Mercer, G. (2005). Disability, work, and welfare challenging the social exclusion of disabled people. Work, Employment and Society, 19(3), 527-545.

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