1

A GEOGRAPHICAL PERSPECTIVE OF DISABILITY

Niluka Gunawardena

Undergraduate Thesis Highest Honors, 2007 The Graduate School of Geography Clark University

Tables and Figures Table 1: Accessibility by residential area 89

Figure 1: Disability by Age and Gender (%0 Figure 2: Deaf and Partially Hearing Pupils by Type of Facility (%) Figure 3: Students enrolled in special education gender and disability (%) Figure 4: Disability Poverty Cycle Figure 5: Disability and labor force status

5 47 49 58 72

Figure 6: Household computers and internet use among disabled and non disabled 81 Figure 7: Definitions of disability Figure 8: Gender, Disability and Vulnerability Figure 9: Perceptions of Disability and Sexuality Figure 10: Perceptions of Disability and Institutionalization Figure 11: Perceptions of disability and Opportunity Education, Employment Figure 12: Perceptions of Disability and Technology Figure 13: Perceptions of Impairment and Location Figure 14: Perceptions of Media Portrayal of Disability Figure 15: Perceptions of Objectives of Individuals with Disabilities 91 94 95 96 97 98 100 104 107

TABLE OF CONTENTS

Introduction Chapter 1: Conceptual and Theoretical Background Chapter 2: Geography of Disability Chapter 3: Disability, Image and Identity Chapter 4: Women, Disability and Development Chapter 5: Disability and Technology Chapter 6: Internet Survey on Disability Chapter 7: Discussion and Conclusion Bibliography

4 7 16 34 43 66 84 110 116

Introduction: Why Disability?

In a society filled with temporarily able bodied individuals every single one of us are likely to experience a temporary or prolonged disability at one point or another in the course of our lives. Disability is often associated with inherent deformity and incapacity. However, in reality even a minor change to the normal body supported by the social, economic and spatial structures of our society such as a sprained ankle or a migraine could transform a given space from and enabling to a disabling environment. Even if we are not susceptible to illness and disability in our youth, the onset of physiological impairments with age also places many of us among the ranks of the disabled. Therefore, an interesting dimension to disability is that unlike other more static forms of human variation, disability could affect an individual at any time during his/ her life. In fact, less than 10% of all disabilities are congenital, with others being attributed to illness, injury, amputation or old age (WHO, 2002). A study carried out by the New Zealand Ministry of Health indicates that there is a strong positive correlation between age and the incidence of disability, reaffirming the concept of a temporarily able-bodied global population.

Incidence of Disability by Age and Gender

Figure 1: Percentage of Disability by Age and Gender Source: NZ Household Health survey 1992-1993

As depicted above, over 80% of both males and females above the age of 65 experience a disability in the sample population (New Zealand). Hence as a temporarily able bodied species, disability invariable affects every member of society, making the study and understanding of disability of critical importance. It was this factor which initially motivated me to study disability from a geographical perspective. Scope of the study I started this project with the realization that the term disability refers to a vast and complex range of experiences, ideas and interpretations. Hence I will not attempt to provide an all inclusive, definitive analysis of disability within the scope of this study. Instead, I have focused my research on the following specific questions. The chapters of this study have been tailored to explore each of these areas: 1. What are the major explanations and theories available for the understanding of disability? (Chapter 1)

2. Is there a geographical dimension to disability? (Chapter 2 and 3) 3. If so, has the discipline of geography incorporated the study of disability in to its purview? If not, why? (Chapter 2) 5. How does geography manifest itself in the everyday lives of individuals with disabilities? (Chapters 3, 4, 5 and 6) 4. How can traditional geographical theories be used to understand disability? (Chapters 26)

Thesis This study postulates that disability is a profoundly spatial and hence geographical experience, be it at the microcosmic level of functionality and navigation or the macrocosmic level of social organization. Despite this relationship, it recognizes the paucity in the study of disability within the field of Geography and illustrates how and why Geography could and should engage in a vigorous examination of disability in its spatiotemporal manifestations.

Chapter 1: Conceptual and Theoretical Background A survey of the current literature available in the field of Disability Studies reveals two dominant schools competing for the conceptualization of disability. This binary distinction in ideology was first highlighted by Oliver (1983) in his ground breaking publication Social Work with Disabled People. Oliver broadly identifies these camps as the individual/ medical model of disability and the social model of disability. The medical model defines disability purely as physiological deficiencies that place functional limitations on afflicted individuals, thereby delimiting their capacity to carry out normal roles. Oliver calls this model the personal tragedy theory. According to him, this positions individuals with disabilities as hapless victims of illness, deformation and impairment who are automatically disabled by their pathological condition. Hence, the problem of disability resides in the individual due to the psychological loss or functional limitation arising from impairment. Abberly( 1991) builds on this, stating that a medical model of disability based on symptomology is always coupled with the need to cure, rectify and modify in order to normalize and fix the individual with the disability. This is the basis of the present authoritarian health care and rehabilitation system in USA, where a paternalistic expert or professional such as a medical doctor, prescribes and acts for a passive client (Johnstone 2001). A primary and influential proponent of the medical model of disability in social science academia is Reginald Golledge. According to Golledge, problems related to mobility and accessibility arises from natural limits imposed by impaired bodies that individuals with disabilities inhabit (Golledge 1990, 1991, 1993). Accordingly, modern

urban environments amplify these pre-existing natural limitations through careless design. Hence, it is primarily the duty of the afflicted individual to overcome the obstacles of physical functionality. He uses his life experiences as a disabled scholar to validate this view. Golledge,s argument has been built upon by Imrie (1993), Vojakovic and Matthews (1994) who identify constricting physical features such as uneven surfaces and inaccessible transport to be amplifiers, rather than causative agents of disability. Oliver (1990), Abberley (1991) and Gleeson (1999) vehemently oppose this argument on the basis that it reduces the issue of disability to individual functional inadequacies in uncaring environments. The medical model is also based on the concept of the normal or healthy human body vs. the abnormal or deficient body. According to Fecteau (2003), the idea of a normal body is a significant departure from that of the ideal body found in ancient societies such as Greece and Rome. While the latter, exemplified by mythical figures such as Adonis emphasize an ultimate form of perfection that may never be reached by the mortal human being, the contemporary convergence towards normalization alludes to the existence of a fixed type of acceptable body and mind. All physiological forms beyond this scope of normalcy are categorized as abnormal, deficient and disabled. This leads to a dualistic frame of reference for the human body creating the dichotomy of the abled and disabled. Due to this dualistic nature of classification and identification, one can not necessarily exist without the other (Deegan, 2001). Smith (2004) and Davis (1995) compare this state to whiteness within the context of normal theory. Rarely is it questioned as to what it means to be white, just as able- bodiedness is given as a truism, a fact, so much so that its

never defined as a separate identity. According to normal theory, people of color represent that which is not white. Similarly, disability represents that which is not ability. In fact, the term able-bodied has only entered the academic vernacular as a point of reference with the emergence of Disability Studies (Rose, 1993). This leads to what Shakespeare (2001) calls the othering process. This leads to the homogeneous differentiation of all those who do not adhere to the norm. Deutsch et al (2000) draws a parallel between the use of umbrella terms such as people of color or Individuals with disabilities to identify those who are non white or non able bodied, thereby creating lumped up categories for extremely diverse, heterogeneous populations. Another interim theory that has arisen from the medical model is that of deviation which relies upon the notion of the Bell curve model developed by Hernstein and Murray (1994). According to this model, human beings fall along the bell curve pattern of distribution as espoused by the statistical theory of standard deviation. While a majority of the population will be concentrated within the parameters of the mean or average characteristics (giving rise to the notion of normalcy), those who deviate from the bounds of the average will be distributed towards the low concentration, outer extensions of the curve. In this view, disability is defined by ones level of deviation from the mean or norm. The use of this model in disability theory has been especially dominant in the sphere of cognitive impairment (Murray, 1995). An important aspect of such conceptualization is that ones placement along the bell curve is more or less fixed by factors such as IQ or genetic composition. This re-affirms deterministic models of disability such as the personal tragedy theory (Oliver, 1990). It has been vigorously challenged by scholars

10

such as Kupermintz (1996) and Devlin et al (1995) on the basis that identification of individuals along such lines of pre-ordained deviation merely promotes dependency based policies instead of empowerment related approaches to disability. Holben (1993) points out that such a model of deviation is still adopted by many countries to identify homosexuality as a psycho-sexual disability. Snyder and Mitchell (2002) even go on to maintain that a deviation based cognitive perception of disability maybe at the root of hyper-normalizing practices such as Eugenics. A popular theoretical framework that has arisen from the critique of the dualistic, norm based medical model is that of natural human variation (Scotch and Schriner, 1997). The theory of natural human variation has been used to explain other forms of diversity such as race, gender and sexuality. This framework has been supported by disability rights activists such as McEvan (2006) due to its potential to increase acceptance for physiological diversity just as in the case of cultural and ideological diversity. Hanson takes a the model of natural variation a step further by claiming that everybody is disabled in one form or another, given the diversity of cognitive, emotional, physical and functional diversity that exists in society (2006). This places all of us along a continuum of disability along which individuals may move over time. The origins of this model are often attributed to Alfred Kinsey, who originally developed the concept of a continuum for sexual orientation and later expanded this notion to all aspects of life. As he mentions in his ground breaking publication sexual behavior in the human male, nature rarely deals with discrete categories... the living world is a continuum in each and every one of its aspects (1948).

11

The Social Model The development of such fluid concepts of identity, place and space along with the emergence of the civil rights and womens suffrage movements provided the background for the ensuing critical analysis of the medical model. This led to the development of alternative theories and frameworks which are broadly categorized under the rubric of the social model of disability. The fundamental characteristic of the social model is that it differentiates disability from impairment. Given this separation, Kerry and Schriner identify disability not as an inherent deficiency of an individual afflicted by an abnormal state of being, but rather the disadvantage or social restriction of activity caused by contemporary social institutions and built environments (1991). Hence, disability is conceptualized not as a condition to be cured or overcome, but rather a result of the prevailing cultural and socio-economic order. Even within this common framework of the social model, the existing literature displays a significant level of divergence in ideology and ontology. The dominant social model found in the U.S. is that of social constructionism. Originally postulated by Ervin Goffman (1963), this model identifies disability as a socially constructed set of stigmatized definitions and socio- special parameters that arise as a response to the existence of impairment. Such social construction is based on creating and emphasizing the restrictions faced by individuals with impairments. Aberley (1997) highlights how the range of activities and capacities deemed as normal are constructed by and in the interest of the hierarchy of non- disabled people. This model has also given rise to the concept of ableism, which refers to any social relations, practices and ideas

12

which presume that all people are able bodied (Chouniard and Grant, 1995). Ableism makes all forms of impairments invisible not only in the political-economic structure, but also in the social consciousness.

Another form of social constructionism that is completely none- material in its scope is idealism, where disability is the result of negative social attitudes towards impaired bodies (Aberley 1991; Fine and Asch 1988; Gleeson 1995). According to Dajani (2001) ableist ideology results in identifying disability as what one can not do and explicitly manifests itself in the language and terms used to refer to individuals experiencing impairment. It also defines the roles and attributes expected of a disabled person such as dependency and pity. This view has led many to reform the vocabulary of disability. The shift from calling someone a disabled person to that of a person with a disability is such a case in point (Oliver, 1994). The former is perceived as defining the individual solely by disability, while the latter denotes disability as merely one of many characteristics attributable to the individual in concern (Ervelles 1996). This school effectively presents disability as a matter of interpretation (Warren, 1980) or symbol of stigma ( Deegan and Brooks, 1985). A primary critique of this view is that it does not explain the basis or root for such social constriction and stigmatization (Oliver, 1997). Furthermore, it is deemed as a highly abstract view of disability with limited practical value (Pfeiffer, 2002). The social constructionist model of disability has also given rise to another form of conceptualization which has been the foundation of the disability rights movement in USA.

13

In this perspective, disability is viewed as a form of discrimination. In other words, the experience disability would not exist if not for discrimination (Burgdoff 1997; Galbraith 2002). Hence disability could be eliminated through anti- discriminatory policies which remove the socially constructed barriers to impairment. Although this has been the basis for the disability rights movement, there is an increasing tendency for many advocates to branch off to an equality/ inequality based paradigm of disability (Gannon and Nolan, 2004). The equity model places individuals with disabilities in the category of minorities experiencing inequities due to political oppression (Oliver, 1990). Hence disability rights are equated with minority rights. Despite its popularity among political advocates, this model is seen as incomplete since it does not explain the reasons for or the dynamics of oppression (Claiborne 2005). Furthermore, Marxist scholars such as Abberley (1997) have pointed that the confirmation of individuals with disabilities as an oppressed minority merely re-enforces the prevailing oppressive social order. In contrast, the dominant model of disability found in the United Kingdom is known as the materialist model of disability. It represents disability as a socio-economic phenomenon arising from the associated mode of production. Founded on the historical materialist base of Marx and Engels (1967), it has been developed by scholars such as Abberley (1985, 1987, 1991, 1997), Barnes (1991), Finkelstein (1980), Hevey (1992), Leonard (1984) and Oliver (1986, 1990, 1996). The model postulates that disability is a social experience which arises from the specific ways in which society organizes its fundamental activities (Gleeson 1999). This model downplays the primacy given to ideology in the US social model by stating that such symbols and discourses are derived

14

from the ways in which society organizes to meet its needs. The material model of disability has tended to expand the Marxist concept of economic materialism to include factors such as culture and politics. An important proposition made by this school is that disability has not always been equated with dependency since certain traditional societies have organized their fundamental activities in non- disabling ways (Barnes, 1996). A model that is an offshoot of the British social model is that of historical materialism. In this case it is not only the form of production and social organization that creates disability, but the point in time at which this occurs (Gleeson, 1999). This provides a definition of disability that is more temporally flexible than its predecessor. Dorn has made a significant contribution to this model through his work the moral topography of intemperance(1999). He examines how intemperance has evolved from a non issue to a moral issue and eventually a disability over time (1999). Dorn goes on to argue that the body is the material intersection between the existing power structure and agency. Hence as the power- agency dynamic transforms over time, so does the body. Similar thoughts have been expressed by black emancipation/ civil rights scholars (Curry, 2007). This implies that disability is a dynamic bodily manifestation that changes over time. This basic model has been supported by Gleeson (1996) who goes on to highlight the importance of extending this model to one that incorporates both time and space. He argues that disability is not only a historical but also a geographic materialist construct (1999). He uses this as a spring board to call for increased focus on disability within the discipline of Geography. Similarly, Dorn (1999) is another prominent scholar who highlights the importance of placing disability within the context of Geography.

15

Summary This brief overview of the principle models and theories of disability reveals a high degree of ambiguity, diversity and dissent pertaining to the understanding of disability in western policy and academia. Despite the broad categorization of such definitions and concepts under either the medical or social model, distinct variations can be identified within the myriad conceptual frameworks that fall under them. Most of the models developed thus far have focused on disability as an inherent abnormality to be rectified through medical science and technology. More recent social models have identified disability as an artificial set of conditions created by external factors. In the latter case, external factors have been identified as either ideological (such as discriminatory attitudes) or material (such as modes of production). The more recent literature attributed to the social model (Gleeson, Dorn, Abberley, Oliver) indicates a movement towards identifying disability as a fluid social construction that fluctuates on a situational basis. Temporal studies of disability (Dorn 1999; Corker 2002; Shakespeare 2002; Terry 1995; Thomas 1996; Longmore 2003) have significantly contributed towards the emergence of this trend. However, there is a paucity in the analysis of disability in the context of space and place, other than in reference to accessibility and design (Golledge 1996). To this extent, Gleeson (1996, 1999) has been a pioneer in placing disability within a socio-spatial context in his influential publication A Geography for Disabled People (1996) and Geographies of Disability (1999). Given this overall scholarly and historical framework, the next chapter will go on to elucidate how disability can be explained and understood through the discipline of Geography.

16

Chapter 2: Geography of Disability A Brief history of Disability as a Field of Academic Inquiry As illustrated in the preceding chapter, scholars belonging to a wide spectrum of disciplines ranging from the Natural Sciences to the Social Sciences and Humanities have provided multiple definitions of and explanations for disability. However, such examination in an academic and scholarly context beyond the medical sciences is a relatively new phenomenon that can be traced back to the period corresponding to the civil rights era of the 1960s and 70s in USA1. This point in history is a watershed in western academia which led to the emergence of new fields and university departments such as Womens Studies and Race and Ethnicity. Such an academic and intellectual revolution invariably led to the formation of new paradigms and world views such as feminism and postmodernism. Compared to its incorporeal predecessors, such frameworks placed emphasis on the role played by the human body (or physiology) in the creation of socioeconomic structures as well as the power dynamics between the participants within those structures. Such frameworks converged along the common theme of embodiment which is the way of living or inhabiting the world through ones acculturated body (Weiss and Haber, 1999). It provided an alternative to the physical, biological and sterile human body which is viewed as an independent entity. It definitively locates us as corporeal beings occupying place and time and hence being bound by its parameters such as culture and society. Hence, as materialist geographer Lefebvre (1991) mentions It is by the means of the body that space is perceived, lived and produced. This paradigm shift also had
1

Ed Roberts, founder of the Rolling Quads at UC Berkely is often quoted as the father of modern disability studies for his establishment of a Disabled Students Program at the Berkeley campus in 1970

17

important implications for the conceptualization of impairment and disability, providing the ideological and disciplinary background for the appearance of social models of disability and the emergence of disability as an academic field of inquiry. Why a Geography of Disability? Given its recent inception, disability is a rich field of study offering a relatively unchartered territory with a waste potential for exploration and discovery. In this section I will examine how disability is intimately connected with space and place and how the highly interdisciplinary, multi-faceted nature of the discipline makes it a fertile ground for the study of disability. Geography and Embodiment Several important scholars in the field of Geography have drawn links between space, place and embodiment (Merleu- Ponty 1962; Golledge 1990; Lefebvre 1991, Harvey 1996). Such theories place the human body as the meeting, defining and morphing point of the material transformation of nature. Embodiment identifies space and body as part of a symbiotic metabolism for the socialization of place (Lefebvre 1991). As the human body (including the mind) transforms natural environments, it is significantly influenced and redefined by the ensuing changes, which in turn determines subsequent transformation, creating a mutually supportive positive feedback loop between the natural environment and human embodiment. This process not only leads to the creation of unique social spaces, but also to unique forms of embodiment. Within this broader framework Geography as a field assumes that the conceptions of the body and the conceptions of spatio- temporality are mutually constitutive of each other (Harvey 1996). This has tremendous implications

18

for the understanding of disability. Chouniard (1997) also summarizes this position of embodiment within Geography as follows: The body is inscribed in ways that empower and disempower, and the material corporality of the body makes a difference in how such processes unfold. The process of social embodiment is closely linked with the formation of individual embodiment in the organization of a given society. Harvey (1996) claims that an understanding of spaces such as the urban city must begin with the question of whose bodies produced the city versus whose bodies inhabit it. This has important implications for the creation and reproduction of social, political and economic spaces. Disability Geography Given this embodiment based perspective in modern Geography, it has the potential to be an optimum discipline through which to study, analyze and understand the creation of disability through space. However, despite the eager incorporation of other forms of marginalized embodiments such as women and non- heterosexuals in to the purview of Geography, scholars in the field have a general reluctance to embrace disability in to its gambit. Abberly (1997) attributes this tendency to ableism within the field of Geography which functions on the assumption that all human beings are free from impairment (ablebodied). However, this almost unconscious exclusion of disability from Geography merely reifies the marginalization associated with disability.

19

In his case for a Geography of disability, Gleeson states: Disability is a form of social difference whose marginality is confirmed both by the oppression which disabled people experience and by its invisibility within the concerns of social sciences, including human geography (Gleeson 1997: 199). The exclusion of disability from Geography not only leads to a void in the field, but also to a sense of academic impoverishment in the discipline. An important aspect of Geography is that it can potentially become a solid meeting ground for both the medical and social schools of disability. The former fits well with branches of Geography that view the human body and the environment as separate entities. This is based on the premise that humanity is inherently faced with the tyranny of nature which must be overcome through action and adaptation (Gordon, 1983). In the context of medicalised disability, this tyranny is acutely omnipotent in the natural and artificial landscapes due to the inherent deficiencies of disabled bodies. Golledge (1963) has been one of the first Geographers to conduct his work under this assumption. Accordingly, disabled individuals must overcome their landscapes and learn to adapt to their disability, given a fixed and unfriendly natural environment. This can be done by the use of prosthetics, implants, other physio-technical assistive devices and medical alterations or cures that facilitate the normalization of the deficient body. It can also be achieved through other means of technology which make the surrounding terrain more navigable, such as wheelchairs, auditory tracking systems for those with visual impairments (developed by Golledge) and even the internet. The modification/ adaptation based solution has been incorporated in to related fields such as Urban Planning and Architecture, especially within the context of physical accessibility.

20

The impairment based medical model has also been expanded by geographers within the technological determinist tradition, especially following the emergence of the internet and nanotechnology. Such geographers postulate that obstacles such as disability can be overcome through technology based on the concept of normalization discussed in chapter 1.The link between technology and disability is filled with multiple layers of opportunity and limitation which will be examined in chapter 5.

The Socio-temporal Materialist Embodiment of Disability As highlighted in the introduction to this section, embodiment plays a vital role in the creation of space and place. This concept can intimately situate disability in the field of Geography as a form of social embodiment. This section will examine some possible ways in which this could be done given existing frameworks of geographical analysis. An examination of studies done so far which identify disability as a form of embodiment are strongly embedded in the social model paradigm of disability. A majority of these studies separate disability and impairment along the following lines (Oliver, 1997): Impairment: Lacking part or all of a limb, organism, mechanism or function of the body Disability: The disadvantage or restriction caused by the organization of socially created space What is significant in this analysis is that impairment has no necessary correspondence with disability (Davis, 1995). Hence it is the material transformation of nature and the socio- spatial organization of space which reproduces impairment in disabling ways and

21

forms. This implies that all societies have the potential to create disability in its sociospatial manifestation at a given place and time in its socio- spatial manifestation.

Social Organization and the Creation of Disability A primary argument made by scholars such as Davis (1995), Dorn (1994), Finkelstein (1979), Gleeson (1993), Morris (1969), Ryan and Thomas (1987) and Toplis (1979) is that the industrial capitalist mode of production is inherently disabling. A study of disability in feudal society by Gleeson (1993) makes a strong case for this argument. The material transformation of nature at any given time is determined by its form of socio- economic organization, which can be called a mode of production. Geography emphasizes how such modes of organization have continuously changed over time and taken significantly divergent trajectories based on location and space. This explains the simultaneous formation and contemporaneous existence of the many different societies and cultures throughout human history (Diamond, 1997). These units of organization are in a constant state of flux, constantly merging, diverging, morphing and transforming through the process of social embodiment, which both influences and is influenced by the formation of space. This process is accelerated by the phenomenon of globalization which is constantly condensing and redefining space and time, leading to new societies, cultures and forms of organization.

22

Disability, Space and Place Gleesons study on disability in feudal society focuses on a time period and spatial setting in England that is commonly identified as a predecessor to modern capitalist western societies. This form of social organization is broadly distinguishable from our present state of social organization in several distinct ways. A salient aspect of feudal society was that there was no distinct separation of social spaces. Hence the household and its surrounding land (homestead) was the primary space for production, economic value creation, reproduction, social interaction and multiple other aspects of life. The separation between work and home was blurry and was identifiable only by the type of activity carried out at a given time in essentially the same space. This meant that production was far less centralized, standardized and commodified, with individual households responsible for the organization of production. Although such peasants faced a significant degree of oppression, there were no formalized institutions for production such as factories, enabling a considerable level of flexibility. Hence while the aristocracy owned the physical land on which production occurred, the peasantry determined the form and space of production. Historian Le Goff (1988) claims that impairment was ubiquitous in feudal society due to the high prevalence of impairing diseases, malnutrition and the lack of medical expertise. However, this did not make it a disabled society. This low incidence of disability despite the high incidence of impairment can be attributed to the social embodiment associated with the feudal mode of production, which is fundamentally different to our present, western industrial capitalist system of production and value creation (Gleeson 1993, 1999).

23

In feudal society, peasantry was driven by the need to fulfill its basic physiological needs (Maslow, 1943) and to produce the surplus owing to the land owning aristocracy. Given these conditions the peasant homestead economy functioned on the basis of contribution from all its members regardless of age, gender or impairment and focused on interdependency and community reliance for the fulfillment of its needs (Haldon, 1993). Gleeson mentions that Disability in any society is best conceived as a bounded set of possibilities and restrictions rather than an ensemble of predetermined compulsions, emerging from the material qualities of peasant life (Gleeson, 1999). Hence in the context of feudal peasantry where individuals with varying impairments were productive participants in the process of value creation, impairment was not always synonymous with disability. This was greatly due to the fact that work took different and flexible forms ranging from tilling the land, gathering produce, cooking, artisanship and craftwork. It is also interesting to note that such work was not generally defined by gender roles. Hence a man with a mobility impairment could still produce and contribute through more sedentary forms of production such as peeling vegetables or sewing and still be considered a valuable generator of output within this socio- economic mode. The virtual absence of consumerism in this society also integrated mutual dependence in to the system such that it was not seen as a disabling condition. Similar arguments have been used by Davis (1995) and Finkelstein (1979) to state that although there may have been a high incidence of impairment in traditional societies; there was probably a lower level of disability than is present in modern society.

24

I have chosen to focus on the above case which was first examined by Gleeson (1993) to place the social embodiment geography based perspective of disability in context. It clearly indicates how the process of social embodiment, based on the material transformation of nature (production) by human action can define the scope and limit of disability. It also provides evidence for the argument that impairment and disability can be potentially viewed as two separate concepts and that impairment is not necessarily synonymous with disability. .Capitalism, Industrialization and Commoditization Most modern western societies have evolved through the process of industrialization. The reference to western societies in this section will be made within this scope. Industrialization and mass production can be clearly spatially distinguished from its predecessors such as feudalism in that it created a clear distinction, separation and demarcation between work, home and later spaces of value creation, reproduction and social interaction. Industrial society is characterized by the standardization of production and labor in concomitance with the emergence of the assembly line, the division of labor and specialization. It is also identifiable from its dependence on and hence maintenance of mass consumption. This indicates a significant shift in the material transformation of nature from one of sustenance to surplus and eventually mass exploitation. Given the mutually reinforcing link between social material embodiment and social organization (western capitalism, patriarchy), it led to the creation of a unique set of norms, power dynamics and stratifications of embodiment (such as class and race). Industrialization also places a high premium paid on productivity and output, which is determinant upon the

25

physiological capacity to produce within a given industrial structure. This also translates in to the capacity to reproduce productive labor. This is especially the case in female embodiment (Head, 2003) and has important implications for human sexuality. Such a framework leads to the creation of norms (as opposed to ideals) such as that of the normal body which is characterized by health, youth, virility and beauty. Its only such bodies that are made useful, worthy and important within the social organization found in modern western society. All other bodies are relegated into the realms of abnormality. Hence the spaces within such a society cater to the able-bodied norm, leading to the emergence of implicit or explicit ableism. It is within such an environment that impairment becomes an abnormality, deficiency and disability. Not only do impaired bodies not correspond with the physiological norms of society, but it also threatens its wellbeing by becoming a burden on the able bodied population and also threatening future generations through the potential reproduction of impaired bodies. These two factors have become major sources of disability based oppression in contemporary society. Such oppression and marginalization leads to the creation of stigmatized images, symbols and identities which in turn reinforces ableist social organization. This aspect of disability will be examined in greater depth in chapter 3.

Measuring the worth of a human being Within the historical period identified with the emergence and development of capitalism, several responses to impairment (disability) are identifiable. One major response has been that of segregation and institutionalization. While in the feudal system, many opportunities

26

were available for productive contribution regardless of impairment, the industrial system considerably reduced these opportunities and hence the value of impaired bodies. Firstly the spatial re-organization of industrialization through the formation of distinct locations for work, recreation etc. created a separation of activity along the variables of both space and time. This in effect amplified the obstacle of distance and terrain for the physically impaired body. It also relegated the impaired body from a state of inter-dependency to one of dependency. With factories becoming the locus for value creation, those who could not access or function within such standardized spaces did not have a productive role in the economy. This trend is concomitant with the division of labor roles along the lines of gender and the nullification of the economic worth of work carried out (primarily by women) within domestic settings. These trends had important implications in terms of control and oppression, which to this day influence the lives of women and individuals experiencing disability. With the maturity of capitalism, the need also arose for the consumption of mass produced goods. This also affected the construction of the normal (and hence abnormal) body, where social worth also became increasingly associated with the ability to consume. Hence, those with limited consumption capacities such as the poor and disabled were progressively devalued in society. That devaluation of worth has even led to the dehumanization of such marginalized groups in certain cases. There was and still is a general overlap between poverty and disability ( Deegan, 1995). As a reaction to this social devaluation, the practice of segregation was carried out in respect to the poor, disabled and other deviants during the industrial era. This was achieved primarily through the process of institutionalization either in poor houses,

27

asylums, prisons, and later hospitals. As Gleeson (1999) points out, shifts in social embodiment led to the creation of new cultural- institutional constructions of normality and social dependency. It influenced and was influenced by the medical sciences and related fields of the time such as Eugenics, which pathologized impairment and many other forms of social deviance. Such factors played a major role in creating the current trend towards correcting and normalizing disabled bodies as a humane course of action. This practice led to the physical segregation of disabled populations from non disabled populations which created a culture of fear and otherness (Oliver, 1997) which exists to date. Given this historical trajectory, many of the spaces in modern western capitalist societies- social, economic and cultural contain the disabling features of industrialization. The concept of institutionalization can be used to illustrate how although the manifestations of disability may have changed in modern, western, capitalist societies, the embodied underpinnings remain similar to those of the late industrialization era.

Institutionalization through de- Institutionalization In the US, an ever increasing emphasis has been placed on integrating individuals with disabilities in to society with the rise of the disability rights movement and the passage of the Americans with Disabilities Act (ADA) of 1990. Hence, community care facilities which enable individuals to function in mainstream society beyond the walls of institutional facilities have recently emerged as an empowering and liberating alternative for those with severe disabilities. The Berkeley Independent Living Center is such an

28

example. However, present market forces present considerable obstacles to the development of such community based alternatives. A significant barrier to the deinstitutionalization and integration of individuals with disabilities is what Dear (1992) calls the NIMBY syndrome. Among other things, it represents a particular set of fears and anxieties towards individuals that could potentially devalue the local landscape through their presence. In addition to factors such as stigma and biases, concerns regarding how the proximity of othered individuals (especially in community care settings) affect property values lie at the center of this syndrome. This has created a tremendous amount of resistance to deinstitutionalization and the creation of community care centers. The same can be said of the location of community based mental health service facilities which are seen as an abrasive addition to sub-urban residential neighborhoods. This resistive phenomenon, represented by the interests of strong neighborhood and real estate lobbies often leads to the adoption of avoidance strategies by service and planning agencies. These strategies focus on displacing community care facilities in to locales of least resistance such as low income, decaying, and isolated inner city neighborhoods. Such service ghettos merely recreate the dynamics of institutionalization in an alternative space of oppression (Dear and Wolch 1987; Gleeson et al 1995, Gleeson 1996). Many mental health advocates point out that the deinstitutionalization of patients with mental illnesses, initially adopted as a means of protecting the liberties of such individuals has led to the dumping of socially unwanted and spatially unaccepted individuals in jails. The NIMBY syndrome has inadvertently led to the criminalization of individuals with severe mental illnesses (Linhorst, 2005).

29

Hence the NIMBY syndrome, shows how our present social organization limits the integrative opportunities available for individuals experiencing both physical and mental disabilities. Modern Urban Environments and Legislation The built environment is a significant force in the creation and reproduction of inequalities (Crowe 1995; Knox 1987; Laws 1994; Imrie 1999). Although most western countries have legislative requirements for accessibility, they are likely to be compromised in policy and practice due to the institutional- structural factors arising from current dynamics of social material embodiment. A majority of access literature in the field of urban geography represents such inaccessibility and hence exclusion as a careless accident in the design process (Gleeson, 1999). Alternatively, this tendency can also be seen as a result of the commodified land economy of modern capitalism which creates built environments representing architectural ideals of geometry and cost imperatives driven by the ableist mobility needs of the average consumer and worker(Hahn 1986; Harvey 1989). This may explain the intense debate that remains around the cost to society (which is basically economic costs) of implementing the Americans with Disabilities Act (ADA) even today, well over 17 years in to its passage. Furthermore, a legal, rights based approach has also inevitably further clinicalized disability by creating the need for medical authentification before an individual could request for the mitigation or elimination of disabling environments and landscapes. This is especially the case in gaining adaptive accommodations in workplaces, which due to cost

30

imperatives are structured in disabling ways. Such requirements indicate the importance given to the symptomatic instead of the embodied experiences of disability. Disability in Indigenous Cultures The above cases of feudalism and capitalism raise the question whether the same dynamics can be applied to non Anglo- American cultures and societies (Kasnitz, 2001). This section will analyze the creation of disability in two distinct Native American cultures to explore this aspect of social material embodiment. The Lakota represents one of the many social groups that are presently categorized as indigenous/ Native American communities. The Lakota culture and economy differs significantly from that of modern western capitalism. As Anthropologist Lilah Pengra (2001) illustrates, the notion of individual rights or autonomy is virtually non- existent in Lakota culture, where the individual is seen as a part of a larger group or whole. Physiological variations (which are commonly identified as impairments) are accepted as a natural part of life. Hence even according to historical accounts of this society (Neihardt, 1972) impairment was not seen as a problem to be fixed. This arises from an embodied social organization where each member is seen as capable of contributing in some way or form towards the generation of value and growth of the economic, social and spiritual identity of the group. This community is also based on the foundation of responsibility towards the group, where neutralize the normative value behind the concept of helping, or going out of the way to assist another. These are seen as normal, expected roles and responsibilities of all group members. Hence, dependency or the need for assistance does not transform in to a disability. An interesting medical study in regard to mental illness in

31

Lakota communities was carried out by Bazemore (1999) to examine the high non compliance of patients with mental illnesses belonging to the Lakota community to standard psychiatric regimes. The study revealed that pathological symptoms in western psychiatry such as hallucinations and phantasms are viewed as spiritual experiences by the Lakota. Hence characteristics that might define a major disability in modern western society such as schizophrenic may be seen as a gift in Lakota culture. Individuals exhibiting such traits are seen as having the potential to become shamans and significantly contribute towards the prosperity, wellbeing and security of the group. Shamans are seen as important actors in the social embodiment of space for the Lakota due to their vital role in production and value creation within society. Similar social embodiments of impairment can be found in pre-colonial communities in Kenya and Ethiopia (Sutton, 2006). Hence it is clear that individuals portrayed as unproductive and disabled in one space or time maybe seen as gifted and vital in another. This however does not mean that all indigenous communities held a naturalized view of impairment. The portrayal of Disability as a modern capitalist social creation will only provide an inaccurate, distorted and romanticized conceptualization of disability (Dorn, 1994). As stated earlier, any society has the potential to create disability through social organization and embodiment. This is especially clear when examining the process of disablement in Navajo society which is also a group categorized under Indigenous/ Native American communities. The Navajo community maintains a system of physiological differentiation and diagnostic classification similar to that of the modern medical sciences. Within this system, impairment, especially congenital physical deformity

32

is viewed as pathology, indicative of disharmony associated with contagious magic. Just as the Lakota, Navajo society also views the individual in the context of a larger organism called the group or community. Hence a physically deformed individual carrying contagious negative energy could potentially pollute the entire group (Frankland, 2004). Due to the premium placed on the wellbeing of the group, such individuals are seen as a threat or burden, leading to the creation of disability for individuals with congenital physical impairments. Within the Navajo social embodiment impairment not only devalues production, but also threatens the survival of its social organization. Due to this reason, Navajo communities have tended to abandon babies born with physical deformities (Bayliss, 2004). The above case vignettes reveal how social constraints and liberties attached to certain forms of embodiment vary in both space and time. They provide evidence for my proposition that disability is a highly geographical concept which has significant implication for policy and attitudes towards impairment Summary This chapter has illustrated how disability is a profoundly spatial experience, be it at the microcosmic level of functionality and navigation or the macrocosmic level of social organization based on social material embodiment. It also indicates how socio-temporal variations have led to different conceptual frameworks of disability in space and time indicating that there is no necessary relationship between bodily variation (impairment) and disability. Furthermore, through an analysis of disability in different spatio- temporal settings defined by unique forms of social organization, this chapter has shown that

33

Geography can play a major role in both explaining and understanding the highly fragmented representation of disability in other disciplines. It provides the optimum interdisciplinary lens of spatiality for the study of disability. Hence, this chapter underscores the importance of including disability as a major area of study within the field of geography. It also proves how social material embodiment can be used to understand disability from a geographic perspective. Chapter 3 will examine the significance of placing disability in the context of time and space both for the creation of disability related images and identities and the formulation of policy.

34

Chapter 3: Disability, Image and Identity The analysis of disability through social material embodiment in chapter 2 illustrates how the organization of production can create and transform disability through space and time. This chapter will specifically focus on a crucial elemental in the process of the creation, reinforcement and reproduction of disability. This element can be broadly identified as the formation and ideological hegemony of the identities and images of disability in a given society. A primary link between image, identity and individual embodiment within the larger framework or social organization is that of discourse (Fucoult 1969; Haynes 2003). The embodied social organization at a given place and time produces specific discourses of disability that places impairment within socially produced frameworks of power. Given the devaluation and marginalization of impaired bodies the modern capitalist mode of social organization, disability is identified with dependence, incapacity, tragedy and pity in popular discourse (Canguilhem, 2005). This is evident not only in public policy and the medical establishment, but also in media, language, literature and public knowledge. The current system of social organization in modern western capitalist societies based on commodified labor and mass consumption tends towards a discourse of disability based on paternalistic subordination (Haynes, 2003). An examination of the portrayal of individuals with impairments in popular culture including television, film and literature provides ample evidence for the explicit manifestation of subordination. Most works dealing with characters with physiological impairments place disability before the individual. Hence the individual is the disability. Furthermore, the character, plot and

35

setting of such works are bereft with signs and symbols that articulate a discourse of pity (Panol, 2001). A majority of such characters are represented as heroes who overcome their disability and lead a normal life. Hence the primary goal of an individual with a disability becomes normalization. This has been the theme in many popular films such as Ray (2004), Shine (1996), The Other Sister (1999) and My Left Foot (1989). They have a strong focus on attaining independence, as opposed to interdependence. In reality, interdependence remains vital not only to individuals with impairments but also to so called able bodied individuals. The image that one does not attain adulthood until gaining complete independence and autonomy has contributed towards the constant infantalization of individuals requiring assistance. It has also contributed towards the creation of independence oriented policies which have ironically led to the social isolation of individuals with disabilities. This is especially so for elders experiencing disability. Furthermore, daily challenges faced by individuals with impairments inhabiting disabling environments such as accessing a bus or public toilet are rarely featured in such films as acts of heroic courage, when in fact these are the main obstacles for most people with disabilities. There is also a strong tendency to represent impaired individuals as either saints or villains in popular imagery. If not, there is an assumption that such individuals are surrounded by saints and villains. For example, in the year of 1997, British media featured a spate of stories on the plight of child carers, which became popularly known as the Cinderella trap (Stables and Smith 1999; Crang 1998; James 1998). The Cinderella Trap referred to stories of children belonging to families where either one or both parents have a

36

disability. These children were portrayed as heroes and little soldiers who faced tremendous hardship, limitations and woes to care for their disabled parents. Not only did such coverage re-confirm disability as a personal tragedy but it also led to a fierce debate over the competence of individuals with disabilities to be good parents.

Such distorted representations flame the othering of individuals with impairments, leading to either under-expectation or over-expectation by society. Popular media not only represents existing stereotypes but also contributes towards the formation of such stereotypes in an interlinked cycle of reinforcement. This process strengthens the discourses of disability dominating the prevailing order of social organization. Rose (2003) has extended this relationship to the realm of language, where the terms or phrases used to refer to individuals with impairments are loaded with negative connotations. Dumb, retard, maniac, crazy and lame are a sample of words in the popular vernacular that are used in a demeaning context either with or without the visible presence of an individual with an impairment. This creates and helps maintain a subconscious repulsion towards and fear of disability. The same argument of oppressive linguistic imagery has been made in the common usage of racially charge terms by Smith (2004).

Images and Identities at different places and different times The social material embodiment analysis of disability presented in chapter 2 illustrated how a certain impairment or bodily variation which is a disability in one society can be neutralized or even idealized in another society, separated by space, time or both. This

37

chapter aims at strengthening this view through the examination of popular imagery in the formation of disability over place, space and time. For example, foot binding was commonly practiced in China from the 10th to the early 20th century. This entailed the conscious social production of deformity. Bounded feet were unnaturally small and relatively dysfunctional, but seen as both a symbol of status, eroticism and desirability within this social space and time. However, such deformity is seen as an undesirable form of disability in modern China. This transformation of the same impairment from an ideal to a disability corresponds with the shift in social organization and embodiment in China over the past century. In the case of modern western society, individuals who are sexually attracted to impaired or abnormal bodies are commonly referred to as devotees. Unlike in traditional Chinese society, those who are attracted to deformed bodies in USA, especially if able bodied are often identified as paraphilics with identity disorders by western medical professionals (Owens, 2006). In fact, the idealization of impairment was not endemic to China. In 19th century Europe, the ideal of beauty was a woman with an un-naturally disproportionate body attained by means of a corset. As in the case of foot binding, corsets were a major cause of many respiratory and digestive problems among women, often causing severe impairments in addition to restricted mobility. However, these factors were taken as a normal part of the sedentary, fragile, corseted beauty and formed both the social expectations and norms of femininity and status. Hence even in western societies, impairments that are presently seen as disabling were normalized through popular imagery and discourse. These examples show how a deformity can shift from being a disability to an aspect of the normal body, and vice

38

versa at the same location in a different time period or a different location at the same time period based on popular imagery. Such variation has important implications for the development of and expansion of geographical perspectives on disability. Attention should also be given to the existence of subcultures within mainstream society that redefine the scope of impairments identified as disabilities. A most interesting subculture with a strong presence in USA is Deaf Culture. It is based on the premise that deafness is neither an impairment nor disability. Instead, it identifies deafness as a cultural identity, unified by a common language and set of linguistics (such as sign language). Hence terms such as hearing impaired are seen as unwarranted and derogatory. Within this subculture, deafness is presented as a language barrier rather than a disability. Deaf culture has led to the emergence of influential institutions such as the Gallaudet University in Washington D.C. which consists solely of members belonging to the Deaf community or think tanks such as the Deaf Institute. In fact, Deaf Studies is becoming a popular field of academic enquiry focusing on the study of Deaf culture and identity. Hence, the unique social material embodiment of deaf culture shows how an attribute commonly seen as an impairment or deficiency can be seen as the model of the normal body based on the social organization of a subculture (Johnstone, 2006). Perhaps one of the most significant developments in terms of disability and identity is the emergency of the disabled individual as a consumer in western market economies. In this case, the special needs of individuals with disabilities are commoditized and translated in to multi- billion dollar industries such as community residence care, home assistance, assistive technology, medical research, nanotechnology, customized design and

39

even weight loss programs and plastic surgery. This trend is increasing rapidly with the growing number of elderly individuals with impairments and expansions in the medical scope of disability through new classifications and diagnoses. Especially in the case of the former, the emergence of an aged, disabled baby boom generation with high levels of disposable income has led to a corresponding boom in related service industries. In fact, Australia has already established several Disability Industry Clusters or areas that provide services, health care facilities and accessible residential buildings in one centralized location (Whelan, 2003). Similarly, certain US firms have combined the notions of community living and disabled consumerism to establish towns exclusively for individuals with disabilities. The Martha Lloyd community in Tioga County, PA is such an example. Despite the supposed benefits of such private community care schemes, the validity of concentrating and isolating disabled individuals in special service locations is questionable. According to Drake (2001) such spaces merely recreate oppressive institutional dynamics in more luxurious settings. Black Falcon Advertising estimates that 48.5 million disabled consumers in the US age 15 and over have an estimated total discretionary income of $220 billion. This presents industries with a large relatively untapped market. Black Falcon also claims that disabled consumers display a higher degree of brand loyalty than non- disabled consumers (2007). Such trends that are in line with the capitalist pre-requisite of mass consumption have in turn led to a greater visibility of individuals with disabilities in TV commercials. For example, companies such as Levis, Citibank, Crest, and AT&T have used deaf actors in their commercials since the mid 90s, both in order to exude an image of community

40

consciousness as well as to appeal to disabled consumers. The 90s McDonalds ad with college aged deaf students discussing in sign language about going to McDonalds is such a case in point. The National Captioning Institute identifies corporate advertisers as being the primary close captioning sponsors of prime time television programs (2005). Such ads have ironically normalized images of disabled individuals through consumerism. Hence consumption of goods ranging from toothpaste to cars has become the common ground for disabled and non disabled individuals (Jones, 1997). On the other hand, the consumer model of disability has also led to the use of images of disability as a sales pitch to invoke the approval of the general public. For example, in 2000, Targets print ad campaign featuring children with physical and cognitive disabilities led to a surge in the sale of products modeled by these children. According to Bob Thacker, Target VP of marketing, we (Target) received1000 supportive letters and (It) has been the single most successful consumer response weve ever gotten (Washington Post, December, 2000). There has also been a significant amount of controversy surrounding ads featuring celebrities with disabilities. The Nuveen Investment Management ad aired during the 2000 Super Bowl starring actor Christopher Reeves (former Superman) led many individuals with disabilities to believe that spinal cord injury had been cured. The ad featured the quadriplegic actor suddenly walking across a stage. The company later clarified the confusion by saying that the image was supposed to show the impact that money can have if it is well invested. However, both the misleading image and the intended message

41

infuriated individuals with spinal chord injuries world wide. It also reinforced the stereotype that life begins when the disability is cured. Interestingly, the Cingular Wireless Super Bowl ad in the following year (2001) featuring Dan Keplinger, an artist with severe Celebral Palsy was extremely well received by disability rights activists. In the ad, Keplinger, surrounded by his paintings says Im incredibly lucky with gusto and joy. It is still considered by many as one of the first occasions where a disabled individual was portrayed in prime time television as being capable, blessed and fortunate just as they are (Garfield, 2001). Similarly, visitors to New York and Los Angeles in 2005 were able to see billboards featuring quadriplegic athlete Mark Zupan modeling for Reeboks I am what I am campaign (Hardin, 2003). What do these positive media images imply in terms of social organization and disability? Firstly, it indicates how the increasing recognition of disabled individuals as consumers is leading to the re-valuation of such individuals in American consumer culture. This has induced firms and hence media to normalize individuals with disabilities leading to pseudoeconomic empowerment (Hogg and Wilson, 2004). This means that first and foremost, disabled individuals are likely to gain equality as consumers in USA. This logic has been used by several disability rights groups such as the National Organization on Disability (NOD) to use the consumer ticket to create increased accessibility, recognition and visibility of individuals with disabilities. The NOD states that promoting the consumer identity of disabled individuals will induce society to incorporate the needs of such individuals. Similarly, the NOD claims that consumer identity will significantly enhance the relative power status of individuals with disabilities (www.nod.org).

42

The emergence of the disabled consumer identity clearly illustrates how changes in the spatiotemporal organization of society lead to new embodiments of disability. However, one must note that most other countries, especially in the global south do not have any notions of a disabled consumer identity. This is primarily due to the low income status of disabled individuals in such countries, which is in contrast to the emergence of elderly disabled populations with high levels of disposable income in countries such as USA. The international aspects of disability will be examined in greater detail in chapter 4.

Summary This chapter on disability, image and identity indicates how the process of social organization in different spaces creates different images and identities associated with what constitutes the normal body, leading to varying discourses of disability. This in turn leads to interpretations of impairment which are spatially and temporally unique. It also highlights how the emergence of new embodied identities (such the disabled consumer) in a given social organization can significantly transform the spatiotemporal experience of disability.

43

Chapter 4: Women, Disability and Development

I determined the particular focus of this chapter based on the strong commonalities in the dynamics of oppression faced by women, individuals with disabilities and the global poor. These three groups also represent a high degree of overlap, often making the issues examined here inextricably interlinked. The previous chapters have described how the process of social material embodiment at a given place and time can create unique forms of disabling conditions based on its social organization. In this chapter I will expand this view to incorporate how factors such as embodiment and discourse can result in multiple layers of oppression. It will also examine the effects of globalization on the embodiment and identification of disability. Women with disabilities face the double jeopardy of both sexism and ableism. Feminist scholars such as Mary Jo Deegan identify the status of being a disabled woman as a double handicap. If such a woman is from the developing world, then she faces a triple handicap (Deegan, 1984). This lack of visibility is multiplied if such women also belong to other marginalized socio- economic groups such as ethnic, religious, caste and sexual minorities.

Background The adoption of western capitalist models of value creation by a majority of contemporary economies through development policy has effectively made more traditional and culturally located means of production such as artisanship, co-operatives, communes and collective manufacture virtually obsolete. This has led to the wide scale displacement of individuals with disabilities from the process of value creation similar to

44

that of western societies during the industrial era. Such approaches to development based on increased standardization exacerbate the fissure between the normal/ abnormal and the able/ disabled. Hence, in many cases even if a disabled individual has the skills and education comparable to his/her peers, he/she may automatically be excluded from the workforce and participation in the modern economy due to the dynamics of disability, image and identity examined in chapter 3. As a result, such individuals are made insignificant if not invisible in the drive towards greater human well being through development. Coupled with patriarchy, it has led to the specific oppression of women with disabilities. However, the argument presented above does not mean that policies geared towards economic growth are solely responsible for the marginalization of disabled women in development. In fact pre-existing social and cultural perceptions, values, priorities and power structures play a major role in galvanizing, if not germinating such marginalization. Several indicators including rates of education, employment, infant mortality, marital status, political and reproductive rights and targeted violence are indicative of the structural sources of oppression, discrimination and exclusion, which despite their varying degrees of intensity tend to display common trends and realities around the world. The following section will focus on examining each of these areas in greater depth to gain an understanding of some of the realities faced by Disabled women on a daily basis.

45

Education Although education is virtually a universal right in the developed world, it remains a privilege for a vast majority of women with disabilities in both developed and developing countries. In the case of developing countries, where the opportunity to receive an education is determined by factors such as income, gender and cultural expectations, the disabled girl child in the family is the last in the pecking order for any formal education and training. With the apparent trend towards finding riches in the urban formal sector, many low- income families- both rural and urban, are increasingly placing value in educating their able-bodied male children. In many cases, the family considers this as a guarantee of future prosperity and stability, especially for the parents in their old age. This combined with the dominant belief that boys should be equipped to become future breadwinners effectively excludes any disabled female children in the family from receiving an education. It is especially the case if the family in concern has limited financial means. Recent studies in the US by The Center on Human Policy, Law and Disability suggests that sex- role stereotyping maybe more perverse when children have disabilities (CHLD, 2005). Even in situations where the girl child with a disability is the only child, families perceive little or no gain in educating such children who are expected to play passive, dependent roles throughout life. In comparison if the disabled child happens to be a boy, he is still considered to deserve an education, or effective life and vocational skills to be future breadwinners. These general trends typically relegate female children with disabilities to submissive roles and limit their activities to household chores and to helping their parents in the farms. This trend is somewhat ironic, since disabled girl

46

children have the greatest need and necessity to be self- supporting adults (Rajah, 2007). Even in cases where disabled women have the opportunity and means to receive an education through development and social welfare programs, their capabilities are often undermined and channeled into low- income vocational skills such as needlework and handicrafts. Many cases where institutional programs promote the sale of handicrafts and other goods manufactured by women with disabilities, the products are highly underpriced (Human Rights Watch, 2007). This gives rise to the perception that buying such goods is a charitable act although they are of equal quality as those produced by non disabled workers. Furthermore, it reinforces the view that the skills, contributions and creations of women with disabilities are inherently of a lower value than those of normal people. Although such wage and pay differentials exist between able bodied workers and disabled males, the gap is much higher for women with disabilities. Burke estimates this global wage gap between males and females with disabilities to be as high as 60% (Broun, 2004). Formal data and statistics in the developing world regarding access to education and disability are highly limited. In UN ESCAPs Disability at a Glance publication for 2006, only four countries (China, Peoples Rupublic of Korea, Mongolia and Pakistan) reported as having any formal records of disability and education. According to the report A Global Perspective on Rights to Education and Livelihood, less than 10% of all disabled children receive an education, while this is considerably lower (5%- 6%) for girls with disabilities. This gender fissure widens along the continuum of education from primary to post- secondary.

47

What is most interesting to note is that surveys yield higher rates of disability for men than women in developing countries, and higher rates of disability for women than men in developed countries (UN Compendium, 1999). This could be attributed to several factors, including diminished visibility due to low care and support available for women with disabilities, high child mortality rates for females with disabilities (including the infanticide of disabled baby girls) as well as lower life expectancies for disabled women in developing countries as opposed to longevity for women in the developed world which tends to contribute to the figures (Afzal, 1992). An examination of international data on disability and education reveals the lack of opportunity and integration experienced by children with disabilities around the world. The first main division is the segregation of even the low percentage of disabled children who receive some form of education in to special schools. Even in a highly advanced, country like Canada, the literacy rate among individuals with disabilities was below 50% in 1991 (Bukumunhe, 1992). The following tables highlight the distribution of pupils with disabilities in primary and lower secondary schools by type of educational facility and disability in Italy, USA, Finland, Turkey and Hungary. Figure 2 - Deaf and Partially Hearing Pupils by Type of Facility (%) ITALY 95 1 4 USA 55 27 18 FIN 5 11 85 TURKEY 12 8 75 HUNGARY 0 0 100

REGULAR CLASS SPECIAL CLASS SPECIAL SCHOOL

48

Pupils with Physical Disabilities by Type of Facility (%) ITALY USA FIN REGULAR 99 61 6 CLASS SPECIAL 0 30 38 CLASS SPECIAL 1 8 57 SCHOOL

TURKEY 78 0 22

HUNGARY 0 8 92

Source: OECD: Disabilities, learning, and behavior difficulties and disadvantage. Developing comparable education statistics and indicators. CERI(99), 66-77 This table indicates how while 95- 99% of children with disabilities are integrated in to regular classes in Italy and 61- 68% integrated in USA, the rate is much lower for Turkey and Hungary with Hungary reporting 0% integration of both hearing impaired and physically handicapped students in to main stream schools. The situation in USA and Finland are often attributed to the availability of highly specialized facilities and the broader identification of invisible disabilities such as learning and emotional disabilities. In countries such as Turkey and Hungary, a majority of students with disabilities are placed in special schools. This leads to the lumping up of students with varying degrees of needs in to one institution. In most developing countries such as Sri Lanka, the few educational opportunities available to students with disabilities are in institutional or rehabilitative settings. Critics often point out that such schools fail to cater to the range of abilities of its student body and are not in par with regular schools. It also isolates students with disabilities from their able bodied peers, limiting interaction and eventually reaffirming the barriers to social integration. Special classes within regular schools have

49

been used as a solution to this problem in both USA and Finland. However, it still maintains the principle of segregation and separation. Hence, even if a student in a developed country does not have a severe disability, but lacks the financial means or clout to enter mainstream education, their options and opportunities are further constrained by the drive towards segregation. No major international education initiative has focused on this particular issue which indicates that a premium is placed on educating able bodied children over educating children with disabilities. The next striking divergence is gender representation in education among students with disabilities. Unfortunately, theres no comprehensive combined data available on gender and education for all disabled students. The closest proxy is data on gender and education in special schools and classes. This is often used as the general gauge of gender representation in education since data on disabled students in regular mainstream schools is highly limited. The following table clearly indicates a skewed gender dynamic with a higher percentage of boys with disabilities represented in the special school population in USA. It indicates that two thirds of students in special education are boys.

Figure 3- Percentage enrolled in special education by gender and disability type Source: U.S. Dept of Education, OSERS (1998); Valdes et al. (1990)

50

The gross number of disabled students receiving an education at a global level is fractional. This combined with predominantly non- integrative mainstream education resulting from physical, technological and attitudinal barriers make education a luxury for boys and a pipe dream for most girls in the developing world.

In the case of disabled girls who are able to receive some education through special education facilities, myths about worth and capability still abound. Past research indicates that boys in US special education facilities labeled as having mental retardation have higher IQs than girls with the same label. According to GillespieSilver and Heshusius (1981) the reason for this maybe that the stereotype of a female and a person with mental retardation are very similar. Both are seen as illogical, dependent, emotional and needing protection. Girls may not be labeled as having mental retardation unless they have significantly low I.Q than their male counterparts. Similarly most special schools place a priority in teaching students to learn and fit in to their gender roles to be good adults. Tomboys and highly active girls in schools for mentally challenged students are often censured for their deviant behavior. Boys generally receive no such reprimands because their behavior is perceived to be natural (Roach, 2003). Even in vocational schools for students with physical disabilities, gender roles are strictly adhered. While girls are taught subjects such as needlework and basket weaving, boys receive skills in carpentry, motor mechanics and entrepreneurship (Asia Pacific Development Center on Disability, 2007).

51

The Americans with Disabilities Act (ADA) in USA sets equal opportunities to both education and employment as fundamental rights of individuals with disabilities. However, factors such as architectural design and lack of accommodation or adaptive facilities have greatly impeded the realization of these rights in reality. Despite these stark realities, little effort has been taken at an international level to incorporate educating individuals with disabilities and especially girls with disabilities in to education and development policy. The Millennium Development Goals and international efforts for universal literacy have also excluded individuals with disabilities from their direct purview.

Women with Disabilities, Poverty and Oppression Women with disabilities are often identified as the poorest of the poor, both in developed and developing countries (Jenkins, 1991). Such marginalization begins from birth if the disability is congenital or later on in life if it is acquired. The latter is increasingly an issue for aging women around the world.

The oppression of women with disabilities is most evident in the violence directed towards such individuals in the form of battery, mental abuse, physical deprivation and sexual assault. Figures of trust such as family members, teachers, caregivers and colleagues are usually the perpetrators of such action. These forms of violence are an extreme, overt expression of the social and economic subjugation and dominance faced by women with disabilities (Fawcett, 2000). What is most alarming is that women with disabilities are much more vulnerable to such violence than women

52

without disabilities. Disabled women in North America disabled women are 50% more likely to be subject to partner violence than non disabled women (Allies for Women, 2006). This figure is estimated to be much higher in highly patriarchal developing countries (Bownridge, 2007). In the face of such abuse, disabled women have little or no option but to endure, mainly due to their state of financial dependence arising from above mentioned limitations in education, employment and income opportunities. Even in the US, most safe houses do not accommodate women with disabilities, while relevant authorities lack the necessary facilities and services such as sign language interpreters to meet the needs of such women (Fawcett, 2000). Given these options, many victims with disabilities feel safer to remain in abusive relationships and environments. In many developing countries, this situation is exacerbated by the belief that what happens at home stays at home. In societies that treat women with disabilities as a stigma on the family, the incentive to report such incidents is extremely low since it would only add to the shame. As Shirley Koeaglie, a Botswanan deaf activist mentions: If I were raped for instance, who would believe me? No one here understands sign language and my claims would be swept aside as a farce (Koeaglie, 2006)

This is especially the case with women who have severe physical and mental disabilities, where even family members doubt if an able-bodied man or woman could have sexually preyed upon their deformed daughter. This brings out two important aspects of sexual violence directed against disabled women. Firstly, sexual assault is not

53

solely based on sex per se but also on other factors such as perceived vulnerability, control and the power relations between the assailant and the victim. Secondly, it brings out the issue of disability and sexuality, where women with disabilities are treated as asexual beings and hence are often deprived of reproductive health and counseling services. According to a 1992 study by the Roher Institute, 40- 70% of girls with mental disabilities in USA are sexually abused before the age of 18. Similarly, cases of young blind women in Asia and Africa being gang raped by individuals who take security in their visual anonymity abound in Feminist Disability literature. Other types of common abuse take less violent forms such as depriving food and facilities due to non compliance with the needs of care takers and the prevention of social contact due to fear of stigma or public disapproval. Again, it is important to note that much of this abuse takes place within ones intimate circles. More subtle is the mental abuse that is widespread even in societies with apparent safeguards. This may include the under-recognition or denial of the working, social, emotional and reproductive capacities of women with disabilities, rejection and stigma based on the normal-abnormal dichotomy or exclusion and automatic disqualification from participating in decision-making. The asexual representation of women with disabilities also has significant implications in terms of reproductive rights. The high level of sexual abuse experienced by women with disabilities does not imply that they are incapable or uninterested in engaging in mutually consensual sexual relationships. However, as Fine and Asch describe in their landmark book Women with Disabilities, women with disabilities are warned by parents that men only take advantage. Similarly, many are sterilized by force or choice and

54

rejected by both disabled and non-disabled heterosexual or same- sex partners (Titchkosky, 2005). In situations where a woman acquires a disability while married, she faces a high likelihood of being abandoned by her spouse. The probability of separation for women following a disability is twice as high as that for men in USA. This is estimated to be even higher in developing countries with fixed gender and marital roles (Atlantic Highland Herald, 2003). Margerett Lloyd describes how perceptions of disability within the context of gender lead to such trends: There is a big difference between a disabled husband and a disabled wife .A disabled husband needs a wife to nurture him, but a disabled wife is not seen by society as capable of nurturing a husband who is not disabled. This is primarily due to societys denial of the rights and capacities of women with disabilities to fulfill their roles (Head, 2003). Hence, the oppression faced by women with disabilities often extends beyond the political and economic to the personal and sexual. In addition to divorce, many women also face the prospect of loosing their children, either to their spouse or to government social agencies. This tends to happen due to the assumption that women with disabilities are incapable of being effective mothers. In certain situations, governments have even separated babies from their mother at birth if she happened to be disabled (Freund, 2005 ). There are also a significant number of women with disabilities who are single parents but do not have the same supports and resources available to their peers. Although many development initiatives focus on increasing the awareness as well as healthy parenting skills of mothers, very few programs cater to the needs of parents with disabilities. One reason for this is the standardization of practices that undermines alternative forms of parenting and care giving. This acts as a barrier to the

55

process of adaptation, which is a fundamental aspect of the social integration, empowerment and engagement of individuals with disabilities. Therefore, women who do not fit in to the stereotypical profile of motherhood, such as women with disabilities are deemed unworthy and incapable of motherhood. Another form of force and oppression faced by women with disabilities is that of compulsory sterilization. To this date, many countries in the developing world endorse and encourage the sterilization of girls and women with disabilities. It is often coupled with the institutionalization of sexually active women with disabilities. Many institutions carry out sterilization with the intention of preventing unwanted pregnancies. It has also effectively become a means to sweep sexual abuse within such institutions under the carpet. In USA, the legal sterilization of women with disabilities took place until as recently as 1981 (Barnartt, 2003). Females with disabilities face the threat of extermination even before birth. Induced abortion of female fetuses is still practiced covertly in countries such as India. In such a setting a fetus that is identified as both female and impaired has no value and will be the most likely candidate for termination. Even in countries such as USA, prenatal tests are used to ascertain not only the gender of a fetus but also its health. In other words, great emphasis is given to whether the unborn child is normal with the possibility of terminating the pregnancy if a disability is detected. Scholars such as Adriann Asch identify eugenic traits in such practices. It also reaffirms negative societal references to disability. Most importantly, it does what Asch calls letting a single trait obliterate the whole. From the fetus to the adult, individuals with disabilities are seen only as thatindividuals with disabilities. This is especially the case for women who above all are seen

56

as invalids. The abortion of fetuses carrying gene mutations with the potential to cause impairment magnifies this sacrifice of the whole being in the name of ableism. It also acts as a justification for preventing congenitally disabled women from procreating and passing on their flawed genes to future generations. An unforeseen consequence of the above-mentioned realities is the high prevalence of HIV/AIDS among women with disabilities in developing countries. Just as in the case of education, these individuals are rarely incorporated in to Anti- AIDS campaigns. Even today many people believe that women with disabilities are not vulnerable to AIDS when in fact the opposite is the case. These common myths regarding women with disabilities and sexuality have effectively caused both national and international policies render women with disabilities invisible in the development process. Hence, many women with disabilities are uninformed about diseases such as HIV/ AIDS and other STDs. Furthermore, according to a University of Maryland study, individuals with disabilities are less aware of their contraceptive and reproductive options that their non- disabled peers. Among college students, deaf students reported the least amount of awareness regarding AIDS and contraception according to the study (Casino, 2004). The notion that sex with a virgin can cure AIDS has also led to the systematic rape of disabled girls in developing countries due to the common belief that all disabled women are asexual and hence virgins (Nelson, 2003) . Such trends have markedly increased the vulnerability of women with disabilities to HIV/ AIDS but remain virtually unrecognized by policy makers worldwide. In the case of countries such as Botswana, Medical doctors have traditionally denied women with disabilities treatment because it is perceived to be abhorrent for disabled

57

individuals to be sexually active or because priority should be given to able- bodied women (Livingston, 2006). The same is true of women with disabilities who become pregnant. Even in the US, doctors caution women with moderate to major disabilities against bearing children upon marriage. Inadvertently, pregnancy is often a gift for nondisabled women and an irresponsible choice or sin for women with disabilities. Although these policies and practices may vary by form and intensity based on culture and location, the basic underlying assumption regarding the incompetence and low worth of disabled women remain the same.

Women, Disability and Poverty Poverty is both a cause and consequence of disability, existing in a mutually reinforcing positive feedback loop. As illustrated above disability significantly reduces ones opportunities for education, employment and personal fulfillment, placing such individuals in the lowest rung of the socio-economic ladder. It is estimated that only 2% of individuals with disabilities in developing nations have adequate access to basic facilities such as education, housing, sanitation and rehabilitation (Despuoy, Study Series 6, 2005). Of this 2%, women account for only a minute fraction. Impoverished individuals experience a disproportionate level of disability. This is mainly due to their susceptibility and vulnerability to disease and malnutrition. Other conditions commonly experienced by the poor such as high risk vocations, unavailability of vaccines and other health services, poor sanitation, inadequate information regarding diseases and conflict also contributed to this trend. According to the World Health Organization, over 20 million women a year suffer disability and long-term complications due to pregnancy and childbirth. Many of

58

these conditions are reducible if not preventable. The WTO estimates that as many as 50% of disabilities in the world are preventable and directly linked to poverty (International Center for WTO & International Health and Policy, 2006). These factors combined with the isolation, lack of opportunity and debasing faced by women with disabilities also induces them to experience the worst of poverty. Furthermore, this combination of disability and poverty often transforms in to a vicious cycle of deprivation, not only to the individual with the disability but also to his or her family. The UK department for International Development has illustrated this spiral as follows:

Source: The Department for International Development, 2000, http://www.dfid.gov.uk/pubs/files/disability.pdf An interesting point to note about most policy papers available on the topic of women, disability and development is that many have been formulated, written and

59

executed by non- disabled individuals who are also often white males from developed countries. What is striking about most policies is that there is generally very little or no level of input or from individuals with disabilities who are directly affected by such policies. Hence, other than in limited cases of disability related grassroots organizations, individuals with disabilities remain voiceless recipients of charity rather than active agents of change. Even in cases where individuals with disabilities are consulted, the right of participation is often granted to males, while females are left out of the process of civic engagement due to prevailing patriarchal power dynamics or patterns of social exclusion (DPI, 2002). This inadvertently leads to the disempowerment of women with disabilities relative to all other social groups. In terms of newer policies that are promoted as being inclusionary and participatory such as Microfinance, women with disabilities often tend to be sifted out of the system. The Grameen bank Microcredit system initiated by Muhammad Yunus has gained international recognition as a highly successful program for poverty eleviation through womens participation and empowerment. However, even such programs deny credit to women with disabilities. This is mainly due to the underlying reasoning that such women are incapable of running a successful business or making a sound investment and that they will be unable to repay the loan. Women with disabilities are often seen as beggars rather than potential entrepreneurs (Mobility International, 2006). In many cases where women with disabilities try to gain financial independence through self- employment, start up capital becomes a major barrier since family members generally discourage and even prevent such endeavors while lack of collateral prevents their access to formal credit

60

sources. Furthermore, many small-scale microfinance schemes lay marriage as a precondition for participation, which effectively bars a majority of women with disabilities from such schemes. In cases where women with disabilities are able to produce and market their products, they continue to face barriers due to false assumptions like their products being inherently inferior or the fear among potential customers that disability is contagious. Even certain large- scale projects carried out by major development agencies have blatantly excluded the needs of individuals with disabilities in their programs. For example, in 2002 the European Commission launched a development program that entailed the provision of a goat to every house in a target village in South Africa. One household was headed by a single mother of two who was physically handicapped due to polio. She was not given a goat based on the reasoning that she would not be able to care for or reap the benefits of the goat (Thomas, 2004). Within the field of development policy, there is increasing consensus on the idea that womens empowerment is a vital condition for development. What needs to be realized is that this is more so the case for women with disabilities around the world. Around 6% of the worlds population consists of women with disabilities, most of who live in developing countries in conditions of extreme poverty and depravation (Disabled People International, 2001). In the face of the vicious disability- poverty cycle, no real development or poverty alleviation is possible without uplifting the lives, opportunities and most importantly, the rights of such women. In the long run it is vital to develop alternatives to the disabling growth and output based model of development which functions along the lines of standardization,

61

industrialization mass production and consumption and homogenization. This model leads to the marginalization of deviant individuals or outliers such as women with disabilities. The following section will include a brief discussion of functional alternative models that are already being tested by small groups of individuals with disabilities and their allies in varying locations. Development through Empowerment Entrepreneurship Development among Women with Disabilities in Ethiopia A highly successful program aimed at the empowerment of women with disabilities is the ILO sponsored project Entrepreneurship Development among Women with Disabilities in Ethiopia (EDWDE). In addition to women disabled due to disease, accidents, childbirth and pregnancy, genital mutilation or malnutrition, there are a large number of women who have sustain life long impairments due to conflict. This is also the case in other conflict hotspots such as Cambodia, Sri Lanka and Iraq. However, the healths, economic and rehabilitative needs of such women are often sacrificed for those of injured male civilians and combatants. In response to this state of affairs, two local Ethiopian organizations primarily driven by women seeking economic independence called the Tigray Disability Veterans Association and the Ethiopian Federation of Persons with Disabilities united to launch EDWDE. When the two organizations conducted a needs assessment survey of fifty random members of the two organizations it was revealed that the fifty women with disabilities actually needed to support a large number of individuals, totaling 1688 dependents. This clearly contradicted the stereotypical image of the woman with a disability as a burdensome dependent. It revealed that in reality women with

62

disabilities often had the responsibility of providing for multiple dependents, often as single parents. EDWDE, with the assistance of the ILO pool the resources of its members to provide business skills, credit and mutual support to participants. Most importantly, it places great emphasis on decision making by the disabled, for the disabled. The program is revolutionary in that following the initial training by ILO representatives, certain women with disabilities themselves were trained to be future trainers. Similarly they are also an integral part of the decision making process. This program eventually received the support of the federal government as well as other disability related civil society organizations. It has played a major role in expanding the rights and opportunities of women with disabilities in Ethiopia while demonstrating the immense capacity of women with disabilities for contribution, participation and organization by example. This project is currently considered as a blue print for similar initiatives in Kenya, Malawi, Swaziland, Tanzania, Uganda, Zambia and the Baltic States. EDWDE is an ideal example of a development strategy from below, developed by the very individuals who were also the beneficiaries, transcending boundaries as a powerful vessel for socio- economic change. As ILO trainer, Robert Ransom says: The project in Ethiopia is showing that real empowerment of women with disabilities and their organization comes when persons with disabilities are trained and assume total responsibility for the management of their activities and resources. It clearly demonstrates a way to effectively combat poverty through the economic empowerment of women with disabilities and mothers of disabled children.

63

Whirlwind Women and Wheelchairs Whirlwind Women is another grass roots organization that has used the model of collectives for the empowerment of women with disabilities. It is an international collaboration between disabled women in San Francisco and East Africa. It involves the design, production and repair of low cost, customized wheelchairs suitable for local terrains and conditions by women and girls with mobility impairments. These women not only produce their own wheelchairs but also sell wheelchairs to other users in their communities. In East Africa, this organization has successfully broken multiple stereotypes of gender and disability in the process of their activities. These collectives obtain parts and material from discarded or donated old wheelchairs to create practical, affordable and locally adapted products. Whirlwind Women has even caught the attention of large-scale wheelchair producers for their innovative designs. For example, one design by an East African woman includes a small strap on seat which could be used by mothers using wheelchairs to take their children along. This model is empowering in every sense of the word. Not only does it create financial independence and autonomy, but it also extends the skills and capacities of these women beyond sexism, ableism, classism and racism. Most importantly, it shows how women with disabilities have not only the capability but also the undeniable right to privileged roles such as mother, entrepreneur, provider and leader.

The above case related models indicate that adaptation plays a significant role in the empowerment and enhancement of the lives of women with disabilities. Both models focus on collective action and production, skill pooling, participation and flexibility. This is a significant departure from the prevailing hierarchical, predefined, specialized and fixed

64

forms of mainstream production and social organization. This departure serves as a powerful alternative, not only for women with disabilities, but also for anyone seeking empowering, participatory, inclusive grassroots models of development.

Summary

The factors discussed in this chapter illustrate how women with disabilities face a double handicap in the development process. This is primarily due to the undermining and even denial of the capabilities, competencies and innate worth of such individuals embedded in development discourses reflective of the existing dominant socio-economic order. These patterns in turn emerge in everyday aspects such as social inclusion, economic opportunity, basic rights and services, autonomy as well as physical, emotional and sexual wellbeing. Hence, exclusionary forms of social organization influence the life experiences and living standards of women with impairments, both in developed and developing countries. Just as disability extenuates other forms of oppression such as class, gender, ethnicity and race, it also exacerbates the downward spiral of poverty. Hence, it is impossible to attain any real development or poverty alleviation without the inclusion and empowerment of individuals with impairments in to mainstream social organization. This is especially the case for women with disabilities. Such development can be superficially achieved through the incorporation of women with disabilities in to existing development instruments. However, a fundamental realization of the existence, capacity and empowerment of women with disabilities can only be achieved through the adoption of more horizontal, participatory, flexible, community based adaptive forms of development

65

such as those adopted by EDWDE and Women on Wheels. Such a shift in social organization, even at a micro level can lead to new embodiments of impairment and gender that are less disabling. As illustrated by the two case studies featured in this paper, such a paradigm shift has significant implications for the creation and reproduction of disability in a globalizing world. I also wish to use this chapter to stress the importance of examining the influence of dominant social orders and disciples such as medicine in the conceptualization of disability at a global scale. In doing so, I highlighted development policy as one of the many manifestations of this process.

66

Chapter 5: Disability and Technology In chapters 2, 3 and 4, I adopted the approach of social material embodiment to illustrate how there has been a tendency for socio-economic spaces in modern western capitalist societies to become increasingly disabling in form during the process of modernization and development. In this chapter I will look at the flip side of this argument to show how the same process could produce potentially less disabling socio- economic spaces. In particular I will look at the positive interplay between technology and disability as claimed by the medical model through a geographical lens. This is one of the many points where the social and medical models could be given a common ground through the medium of Geography. Given that modern western development has often been equated with technological innovation, I will examine whether such trends have significantly influenced the process of embodying disability. Technology in the context of disability can take any form from medical technologies, prosthetics, communication technologies and transportation technologies to the internet. According to Castells (2000) and the school of Technological determinism, the rise of the network society has effectively eliminated the barriers of space and time (Castells, 2000). This assumption naturally has tremendous implications for the creation of disability. While recognizing the vast range of technologies available at the disposal of individuals with disabilities, I will limit my focus in this chapter to examining the influence of internet technology on the embodiment of disability

67

Barrier Free World Case studies The impact the internet has on the lives of the disabled is best understood by examining how this technology has been adopted by individuals with varying disabilities to overcome the constraints they face in the physical world. Case Study 1: Marlaina Lieberg
PC World Magazine, September 2000

Every morning Marlaina Lieberg, who has been blind from birth, sits at her computer and reads her local newspaper, with her guide dog at her feet. She also browses websites to research corporations to which she can potentially offer the services of her consulting company, while sending e-mails to her clients. During her spare time, Marlaina trades stocks online and shops for clothes and groceries.

A glimpse in to the life of Marlaina Lieberg indicates that blind and visually impaired users can overcome the constraints of visibility and mobility in the real world by operating within the virtual world of the internet. It should be noted that such users are able to read the text and graphic content of websites by using assistive technologies. Assistive technologies refers to any item, equipment or product system that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities, especially in the case of ICTs and the internet. In this specific case, Marlaina uses a screen reader, a software utility that reads web pages out loud, allowing her to surf the web in an auditory context. This case shows the importance of the growth of assistive technologies in tandem with the expansion of the internet. Its only through such concurrent advances that individuals like Marlaina, who were limited to using Braille material and audio books, are now able to access a majority of the main stream information available online. Similarly, e-

68

commerce and online shopping have enabled disabled individuals to experience activities that were heretofore highly grueling tasks. As Marlaina states in an interview with PC World magazine: These shopping services are so important for people who are unable to drive, and those of us who are unable to pursue the isles. Its such a joy. I can even read package directions. Ive never done this sort of thing before

Case Study 2: Alan Toys

Microsoft Press, March 2001

For years, actor Alan Toys, who uses a wheelchair, has trekked down seemingly clear hiking paths only to have an exciting expedition cut short by unexpected mud tracks and boulders. In 2001, Toy created a new website which provides a storehouse of easily searchable maps, directions and grass-root information to help people level accessibility barriers in their neighborhoods. Today Toys Independent Living site supports over 2 million people with disabilities in Los Angeles. The case of Alan Toys and his website provides an insight in to how the internet is used by disabled individuals to enhance mobility not only in the virtual world, but also in the physical world. Traditionally communities are formed by a group of individuals with shared backgrounds or interests in a specific geographical location. Problems of mobility and dispersion have made it highly difficult and impractical for disabled individuals like Toys to create communities and networks. However, the internet has provided a common meeting ground within virtual neighborhoods, thus connecting individuals who are far removed physically.

69

As Alan Toys states: You can share resources fairly easily when you are in the same neighborhood, but the opportunities are a lot more limited when your mobility is impaired and you are not part of the majority in one area. So I wanted to create a disability community on the web. What is interesting about Independent Living websites such as that of Toys is that it is owned by the disability community. Users constantly update routes and accessibility information on a continual basis, thus making the producer of information resources synonymous with the consumer of information within the disabled community. Another website based on the concept of Independent Living is LILA. LILA combines Geographic Information Systems (GIS) based maps of Los Angeles with written descriptions of local disability oriented resources, ranging from non profit service organizations to accessible hiking trails, fishing piers and other recreational destinations. More importantly LILA contains a comprehensive database of wheelchair-accessible entrances, reserved parking spaces at government buildings and the locations of public telephones equipped with telecommunications devices for the deaf. LILA also functions on peer updates. A much appreciated feature of LILA is virtual tour which enables users to make online trips to popular locations and plan for potential obstacles. As Jake Sloans, a client who recently previewed the offerings on LILA states: It provides a central repository of vital information, a place for people with disabilities to share their expertise and the ability for users to find these resources on their own. Case Study 3 The National Association of the Deaf (NAD) A 2002 survey carried out by the NAD showed that IM (Instant Messaging) and E-mail were the preferred form of communication by deaf and hard of hearing Americans at both office and work.

70

This landmark NAD study indicated that the two main peer to peer communication portals of the internet, IM and e-mail, were preferred as communication modes by individuals with hearing impairments to traditional devices such as TTY (Telecommunication Device for Deaf) and Tele-relay. Such traditional devices required specialized equipment and the services of a hearing intermediary. In contrast, IM is 100% visual, individuals can use emoticons to convey emotions, and both parties can type at the same time (unlike TTY and relayed conversations). These were cited as reasons for the adoption of internet technology by deaf individuals. Similarly, many replaced TTY with e-mail since it did not entail phone charges and fees. This is a case of how the internet is both replacing traditional assistive technologies and enabling the disabled to adapt to their disabling social and geographical environments. Assistive Technology Technology in relation to disability also involves all subsidiary tools and assistive devices which enable the user to optimize the benefits of that technology. Among the many assistive devices available, those most pertinent to the internet are as follows: Screen reader: reads online texts for blind users Large high resolution PC screens: provides large fonts for the visually impaired Graphical interfaces: makes typing easier for people with poor co-ordination Touch sensitive screens: provides a customized interface Computerized Voice Recognition : aids users with limited muscle control Computerized grids and cameras: translates eye movements in to speech/ typing DWARK Keyboards: provides flexibility for upper limb impaired users

This list is by no means exhaustive and merely provides an insight in to how assistive devices can make the internet more accessible to individuals with specific impairments, increasing their ability to benefit from the use of internet technology. However, it is

71

interesting to note that many of these assistive technologies were not originally developed for the use or benefit of individuals with disabilities. As Golledge (2007) points out, popular devices such as screen readers, voice recognition programs and computerized grids were originally developed to meet the multitasking needs of professionals such as doctors and lawyers as well as military agencies. The Internet, Education and Employment As discussed in chapter 4, disabled individuals generally meet with a range of limitations to education and training. These include physical accessibility, communication and social integration. This section will focus on the existence of these barriers in USA and the role played by the internet in transforming, mitigating or eliminating such barriers.

70% of disabled individuals seeking employment in USA do not have the formal qualifications of their non disabled peers (Workbridge, 1996). This may account for the gross under- representation of disabled individuals in the labor market. Over half (51%) of disabled females are either unemployed or not in the workforce. 39% of disabled males are either unemployed or not in the work force, compared with 27% of comparable males without a disability (Department of Health, 1993).

72

Disability & Labor Force Status 80 60

% 40
Unemployed Paid employment Not in work force

20 0 Any Any No disability disability disability male male female

Source: Household Health Survey, 1993

In addition to such explicit factors, implicit factors such as discriminatory attitudes and social prejudices also act as constraints to participation. Most surprisingly, during a New Zealand Ministry of Commerce survey, the number one challenge cited by disabled individuals for gaining education and employment was actually getting to college or work. The 2004 Harris survey carried out by the National Organization on Disability revealed that disabled students were twice as likely to drop out of high school (21% as opposed to 10%), while they were twice as likely to have inadequate transportation (31% versus 13%). Despite these barriers, there are is an increasing number of individuals with disabilities in the US labor market. This is attributed by Thomas (2004) to chiefly to two recent developments: the creation of disability friendly employment centers and advances in technology such as the internet. The application of the latter can be seen by looking in to the fields of Distance Learning and Telecommuting.

73

Distance Learning Distance Learning has gained popularity among disabled and non disabled students with increasing numbers of universities and educational institutions offering brick and click courses. Distance Learning is founded on the interactive medium of the internet, which enables differently-abled users to access course content either with or without the use of additional assistive technologies. An important feature of Distance Education as opposed to traditional education is that learning is geared to meet the requirements, needs and pace of the student rather than a standardized format and schedule. This is especially useful for disabled students who can not continuously work over long time spans. Similarly visually or hearing impaired students may gain a greater degree of academic independence, as unlike conventional environments, it does not require the assistance of interpreters, readers, note takers or other support personnel. It also enables students to directly orient themselves with the wealth of information online, thus increasing their employability and making them knowledge workers in the new economy. Disabled students using online discussion boards, e-mail and IM to interact with their peers and faculty state that such an environment of physical anonymity increases their confidence and social acceptance. Its perceived by disabled students as a better way of making first impressions (Bergthasler, 2003). However, as Dorn (2004) points out, this leads to a reinforcement of both the othering and the physical isolation of individuals with disabilities. Distance Education amplifies the invisibility of disabled students in society. This is due to the fact that the physical anonymity factor mentioned above may also lead to the relegation of such students to the position of faceless virtual entities.

74

Hence the concentration of individuals with disabilities in to virtual spaces may in itself create new forms of oppression, embodied images and identities. Furthermore, the widespread use of distance education by disabled students is contingent upon three important factors (ibid): 1. All individuals with disabilities have access to internet technology 2. People with disabilities learn to use internet technology 3. There is a seamless transition of availability of technology for people with disabilities as they move from primary to postsecondary and career environments. In reality, such optimum conditions are virtually non- existent, with significant variations in access to and use of the internet and related communication technologies among those identified as individuals with disabilities. This places severe limitations on the use of distance learning by such individuals. Telecommuting Telecommuting offers disabled workers several advantages over traditional office spaces. Firstly, telecommuting overcomes the key problem of physically getting to work, since the employee can now work in the comfort of his/her home, which has already been adapted to meet his/her needs. In the companys view, this reduces the cost associated with accommodating disabled employees, hence acting as an incentive to hire differently-abled applicants. Secondly, telecommuting provides workers with flexible working hours that can be personalized to meet the specific needs of the employee. It would be difficult to accommodate such needs while retaining productivity in a traditional working environment. As depicted by the three case studies in this paper, telecommuting enables disabled individuals to work in a self moderated, innovative, entrepreneurial environment.

75

Furthermore, with the range of legislation on universal accessibility of public spaces (including websites) and the drive towards socially conscious corporate identities, companies are increasingly eager to obtain the services of disabled online consultants. As Robin Ryans, author of 24 Hours to Your Next Job states; this can be done using technology-e-mail, telephone and fax- without ever leaving your home. However, according to Ericcson and Van Roy (2005), the creation of service based virtual employment places an increasing amount of importance given to high end skills, qualifications, flexibility and even physical agility. Given the relative disadvantaged position already experienced by individuals with disability in terms of education and mobility/ physical accessibility, this may actually make it more difficult for individuals with disabilities to secure such forms of employment. Chaudhry points out that despite mandatory employment regulations in countries such as New Zealand and USA, companies are more willing to make penalty or disability fund payments than to make the necessary adaptive adjustments to accommodate employees with disabilities. This indicates how entrenched embodiments in a given social organization continue to persist in the face of technological quick fixes and nominal surface changes. Virtual Communities, Empowerment and Activism Perhaps the most significant contribution made by the internet to the lives of people with disabilities is the ability to connect with others who are faced with similar physical, mental and emotional experiences. From its inception, the internet has attracted people who were isolated due to immobility or information asymmetries to converge and create communities and support networks online. A simple search on any leading search engine will display

76

over 185 million such websites which were created by the disabled for the disabled. Such websites also provide insight in to the wide and varied number of impairments, illnesses and handicaps that are commonly heaped under the umbrella of disability. Stephanie Coopman (2005) identifies sites related to disability as representing three primary categories; The pragmatics of disability, the politics of disability and disability as community. The pragmatics of disability

A large portion of disability related websites (31%) focus on pragmatic issues such as awareness, resources, services and medical information. Such sites focus on educating the disabled and the general public regarding varied or specific disabling conditions and provide links to other resourceful websites. They also include pragmatic advice on issues such as accessible home designs, modified vehicles and sports training. Disability support industries and service providers such as prosthetic surgeons, care givers and resident support programmers also maintain such websites and links, either as part of a consortium or independent initiative. One of the most famous of such websites is disABILITY Information Resources (http://www.makoa.org/index.htm), which is maintained by quadriplegic Jim Lubin and carries the universal disability logo, as is emblematic of many such websites. While these websites usually do not include discussion boards or public forums, they often provide links and recommendations to such groups. The Politics of Disability

Websites dealing with the politics of disability and activism gained ground during the early 90s following the passage of the Americans with Disabilities Act, 1990. These websites

77

focus on internet based collective action to pass legislation and monitor the implementation of disability friendly statutes and regulations. Local and international sites place emphasis on promoting the civil and human rights of people with disabilities through full participation, equalization of opportunity and development. Such websites provide extensive links to other brother and sister sites of people leading similar initiatives. They regularly feature information on conferences, demonstrations, articles and petitions. Nationally recognized organizations and agencies also maintain such sites and are vital in sustaining public debate on issues related to disability. Such websites also partake in organizing campaigns such as the Training Day for People with Disabilities to create awareness and raise funds for rehabilitation and research. They also frequently provide references to local advocates and groups that may directly be able to address issues and concerns. These sites are closely related to online community and support groups. The Society of Disability Studies (SDS), which is the primary international academic forum for the study of disability, is also an internet based scholarly group (www.uic.edu/orgs/sds). Disability as Community

The most popular and frequented disability related sites (65%) are online communities and networks for individuals with disabilities. Such groups and forums act as an important source of support, information, and encouragement to children, youth, adults and seniors with disabilities. Such networks significantly abate the acceptance and adjustment process of both amputees and congenitally disabled individuals. As the introduction to the Cerebral Palsy Support Network website states: This website provides a list of web forums and chat sites to help people with cerebral palsy, their parents, families and friends to reach out and find the support they may need

78

Such networks also provide mentoring networks that connect older, successful disabled individuals with children with similar disabilities and their families. Such sites frequently have a physical presence by organizing camps, outings and recreational activities to strengthen community ties. They also provide an informal peer review system for products and services commonly used by disabled individuals such as physical therapists, medical services and assistive devices. The internet is a powerful counterweight to social isolation for people with disabilities. A 2001 survey conducted by the National Organization on Disability revealed that people with disabilities on average spend 30 hours a week online, whereas people without a disability only spend 18 hours online. More interestingly, almost half (48%) of the disabled people online claim that the internet has significantly improved their quality of life as opposed to only 27% of people without disabilities. Of the primary areas of internet enabled community participation, disabled respondents cited being better informed about the community (93%) and being able to reach out to people with similar interests/ experiences (52%) as the top two advantages. This clearly illustrates the significant impact the internet has made on community engagement, awareness and interaction of people with disabilities. Locking out the Disabled Despite the many opportunities, advantages and benefits afforded by the internet to the disabled populace, a majority of the websites available online are not accessible to visitors with disabilities. This is especially the case with those whose auditory, visual or tactile faculties are impaired. This is mainly because the format of such sites are often incompatible with the assistive devices used by people with disabilities. The initial

79

deterrent to Internet accessibility for people with disabilities is computer hardware. However, as illustrated in the section on assistive technology, these difficulties have been considerably mitigated by modern technology. Ironically its the emergence of newer multimedia browsers and software that has led to the problem of accessibility.

Web Page Design & Browser Accessibility Popular browsers such as Netscape Navigator and Microsoft Internet Explorer when combined with a screen reader, experience difficulty in identifying graphics, tables, links and their equivalents. In other words, the more flashy banners, caption-free images and pop-ups that a website contains, the less accessible such a site would be to a blind or visually impaired visitor. Furthermore, functions on certain websites do not have keyboard controls and are only available through the browsers menu. Such sites violate the principle of Universal Design which is increasingly incorporated into US and international legislation. Interestingly, nearly half the websites of online retailers are inaccessible to disabled consumers. Most E-tailers fear that the costs of making an accessible site will be prohibitive or that it will require them to replace attractive graphics with an austere look and bold typeface. In reality, any website can be made accessible with minimum cost and modification. According to accessible web designer Beth Loy, through the efficient use of HTML in page layout, introduction of captions and avoidance of columns and discontinuities, most sites could be made accessible. Civic minded companies are also moving towards providing text only versions of their websites to users. As Universal Accessibility gets ingrained into Corporate Social Responsibility practices

80

(CPR), new non profit organizations are providing accessibility approvals and endorsements to websites. One such seal is Bobby, which is online software that tests sites for accessibility and indicates if the site contains features to accommodate the needs of disabled users. Companies such as Amazon already offer text only versions of their websites and make simultaneous modifications to both editions. Furthermore, it uses minimum graphics even in its main web site. By following such a policy, Amazon has been able to win over a substantial number of disabled consumers as opposed to competitors such as Borders, which maintains an inaccessible online storefront. Catering to the market of disabled consumers can be highly lucrative for retailers as illustrated in chapter 3 in the description of the disabled consumer identity. A recent study conducted by the Disability Online Employers Forum revealed that world- wide, people with disabilities presently accounts for over $1.8 TRILLION in sales! Most disabled consumers will use the convenience of internet websites to find suitable products and make their choice. Hence firms could significantly expand their markets and multiply sales by incurring the comparatively insignificant cost to make their online stores accessible. The Digital Divide: The Information Rich and Information Poor In addition to those who are locked out of the internet due to inaccessibility, there are a large number of disabled individuals, even in the developed world, who can not afford the internet and related ICT products. Americans with disabilities are less than half as likely as their non- disabled counterparts to own a computer, and they are as one quarter as likely to use the internet.
Household computers and Internet use among disabled and non disabled individuals

81

Source: Disability Statistics Center, 2000

As shown above, only 9.9% of disabled individuals used the internet in 2000. What is most alarming about this usage is the wide gap (28.2%) in internet usage among disabled and non disabled individuals. This indicates that of the total disabled population in USA, only a marginal number enjoy the benefits entailed by the internet as discussed in preceding sections. This percentage is likely to be miniscule in developing countries. Hence clearly, there is a digital divide based on disability at a local and global level. There are several reasons for the persistence of such a trend which coincide with general patterns in society at large. Firstly, among low income families of individuals with disabilities, expenditure on ICT remain a low priority compared to immediate needs such as healthcare and rehabilitation. Only 4.9% of people with disabilities who have low family income use the internet compared to almost four times as high a proportion (19%) of the non- disabled population in the same income category. Even at mid to high family income levels, internet usage remains low at 16.6% compared to 45.2% of the non disabled populace. This is partially due to the inaccessibility of websites and the high cost of assistive/ support

82

technologies. It should also be noted that the percentage of usage vary according to disability type and status. Furthermore, in the case of racial and ethnic minority groups, the rate of computer ownership is much less when there is a disability present in the household than when there is not. Hence disability tends to amplify existing lines of the digital divide such as income, race and minority status. The same applies to educational attainment. In this case theres a high disparity between the disabled people who lack high school diplomas who use the internet (2.4%) and people with disabilities who have college degrees and use the internet (30.2%). Nevertheless, internet usage among non disabled college graduates remains far higher (63.9%) than for the population with disabilities. Hence, as discussed earlier, although the internet could significantly enhance the educational attainment and employability of people with disabilities, the low internet usage among disabled people without a high school education compounds the problem and limits the educational/ vocational scope of the internet on this segment of the population. This trend is clearly visible in the following graph:

Source: Disability Statistics Center, 2000

83

Chaudhary (2006) points out that such digital inequity is even more pervasive in developing countries, adding to the increased marginalization of individuals with disabilities. Hence the use of internet technology as a solution for disability is an oxymoron. Although it can create barrier free spaces, it remains beyond the reach of many individuals with disabilities due to the oppressive and disabling conditions generated by the larger form of social organization. Similarly, despite the creation of virtual space, urban centers and real spaces still remain the heart of economic and social activity. It is difficult to experience the social environments and interactions of a pub through the internet. Technology can potentially also lead to the increased isolation of individuals with disabilities (Dorn, 1994). Similarly, in the virtual service based economy where high skills, flexibility and multiple functions define the modern worker, the disadvantage experienced by individuals may be amplified due to the existing inequities. Hence while technology may provide a quick fix to ameliorate functional and mobility related constrictions, it does not directly address the roots of disability. As long as society organizes in ways that disable the embodiment of impairment, the inequities faced by such individuals will remain, even in the presence of advanced technology. However, technological modes such as the internet can and does provide considerable benefits to certain disabled individuals at the personal level in the short run. Given these factors, it is evident that Geography can play a significant role in understanding both short term and long term spatial redefinition associated with modern technologies, which in turn will determine social embodiments of disability.

84

Chapter 6: Internet Survey on Disability As part of this project I conducted an anonymous internet survey to study the public perceptions, views and experiences of the postulations raised in the preceding chapters. The survey was completed by eighty respondents during its eleven days of activation (03/15/07 03/26/07). While the overall response to certain fields such as gender, technology, opportunity, image and policy indicated a high degree of fragmentation in opinion among the sample population, others such as sexuality, location and history indicated a general convergence in opinion. This chapter will focus on the examination and analysis of these results as well as its implications for the study of disability. Research Design and Methodology The research instrument used for this study was an anonymous online survey designed using Clark University software according to the guidelines set forth by the University Institutional Review Board for Research on Human Subjects (IRB). The complete survey that was made available to the respondents is provided in Annex 1. The Survey was divided in to four sections, with each section designed to focus on the following areas. Section 1 The Disability Background of the respondent This section was designed to ascertain whether the respondents identified as being disabled or whether they knew of anyone with a disability. It also focused on the issue of what, according to the respondent was meant by disability. Finally it contained fields to indicate the respondents experience or perceptions of accessibility in his/ her immediate

85

locale as well as any direct or indirect experience of stigma or discrimination associated with disability. Section 2 Views regarding normative statements on disability This section contained 10 normative statements representing common perceptions of disability. The respondents were asked to rate each of the statements on a scale from Strongly agree to Strongly disagree. These statements covered the areas of gender, sexuality, institutionalization, education, employment, location, image and policy. Section 3 - Respondents views on disability politics This section contained 10 questions in variable formats which asked for the respondents awareness of and views of the national and international politics of disability. Section 4- Demographic information This section contained 3 questions designed to determine the age, sex and residential location (urban, suburban or rural) of the respondents. Distribution and Scope of Survey The survey was distributed via e-mail providing a description of the survey, the rights of the participant and a link to the survey site. It was distributed to both lists and individuals located in USA. The lists used were those of groups and organizations that had priorly expressed an interest in participating in this study. Recipients of the survey had no obligation to participate. The survey site was designed such that I had no way of identifying any respondent, hence maintaining their anonymity. The respondents were informed that they could stop taking the survey at any time and decline to answer any questions contained in the survey.

86

Survey Results Eighty individuals responded to this survey during the period of activation. The basic demographic characteristics of the respondents were as follows. A majority of the respondents (71.2%) were of the age group 18- 25. There were an equal number of respondents in the age categories of 26-35 and 36- 45 (10% each). The numbers of respondents in the next three age categories were progressively halved, with the age groups 46-55 representing 5% of the respondents, 56- 65 representing 2.5% of the respondents and 66-75 representing just 1.2% of the respondents. There were no respondents above the age of 75. In terms of sex, 55 of the 80 respondents (68.8%) were females, 25 (31.2%) were males. No respondent indicated as belonging to another sex category (such as inter-sex). In terms of residence, 68.8% of the respondents lived in urban environments, 30% lived in suburban environments and 1.2% lived in rural environments. This data indicates that a majority of the respondents were likely to be of the age group 18 25, be of the female gender and live in urban environments. Given this basic composition of the sample population, we can now analyze the information and views provided by the respondents on the 3 survey sections that deal with disability. Section 1 The first question on the survey was Do you have a disability?. All 80 participants responded to this question, with 18 identifying as having a disability and 62 identifying as not having a disability. What is interesting about these results is that 22.5% of the respondents identified with having a disability. However, standard statistical estimates based on the WHO ICF classification of disability that 10- 15% of the average US

87

population has some form of disability (Disability Statistics Abstract, 2002). I have deliberately avoided sending the survey to organizations explicitly for individuals with disabilities to limit any confounding factors. Hence, this survey represents a percentage of individuals identifying as having a disability (22.5%) nearly as twice as high as standard medical estimates. This result can mean several things. It could be that the sample is not representative of the overall population, or that there is a divergence between standardized international classifications and measures of disability adopted by different countries and communities. It could also mean that an individuals identification with disability may not correspond with standard definitions and parameters. The result is also an indication of the varied levels of disability in the average US population quoted by multiple sources and disciplines based on multiple definitions and identifications. It could also represent the ambiguity surrounding a universal perception or definition of disability. A cross tab analysis of the results on the presence of a disability and age group reveals that 28% of the respondents who are between the ages of 18 and25 (who represented 71.2% of the respondents) indicated as having a disability. On the other hand 50% of respondents between 46- 55 reported as having a disability. This may indicate the increased likelihood of experiencing a disability along the age gradient. However, given that no such relationship exists in the case of the other age groups in the survey and given the limited size of the sample (which is still statistically significant), it is impossible to use this as definite evidence . Of the 18 respondents identifying as having a disability, half (9) had a learning disability and one thirds (6) had a mental illness. In terms of physical disabilities, blindness and

88

visual impairments were the most prevalent, with 3 respondents reporting such disabilities. 2 reported having health impairments (disabling illnesses) and two identified as having impairments that were not classified in the survey. Only one respondent had a mobility or orthopedic impairment while none hearing or speech/ language impairments. The fact that learning disabilities and mental illness accounts for a majority of disabilities in this sample (88.3%) has important implications. The identification of learning disabilities has been a relatively new phenomenon which is still not recognized in many non- western countries. Hence, it would be interesting to find out the prevalence of learning disabilities in a similar sample from a non- western country. Furthermore, mental illnesses also remain largely undiagnosed in non western countries and may not be identified as a disability per se by an individual in a different geographical setting. The fact that a majority of the respondents with disabilities have mental or cognitive disabilities may indicate the increasing expansion of perceptions of disability from the purely physical (such as loss of limbs) to more invisible manifestations. Even though77.5% of the respondents did not identify with having a disability, a significant majority (91.2%) of all participants indicated that they knew at least 1 person with a disability. Hence, a majority of the sample had either directly or indirectly experienced or witnessed disability. Therefore the respondents have had at least some encounter with disability, which is an important determinant of the responses to the other fields in the survey. Questions 5 and 6 were directly linked to such experience or awareness of disability. Question 5 states How accessible are the buildings, social spaces and

89

transportation to disabled people in your area?. 54 of the 80 respondents (67.5%) felt that their locales were somewhat accessible, indicating a relatively low level of universal accessibility. 13 respondents (16.2%) felt that their locales were accessible. In this case, it maybe useful to determine the level of perceived accessibility by respondents identifying as residing in different types of areas. Therefore, I have used the responses to question 29 of the survey which asks respondents to identify their area of residence (urban, suburban or rural) to determine the percentage of individuals responding to the combination of each accessibility and residential area option. The results of this analysis are represented in the following table:
Column: What kind of area do you live in? Row: How accessible are the buildings, social spaces and transportation to disabled people in your area?

Inaccessible Somewhat accessible Accessible Very accessible Don't know Urban Suburban Rural Other 3 2 0 0 37 16 1 0 11 2 0 0 1 3 0 0 3 1 0 0

Table 1: Accessibility by residential area

Note: Each cell represents the percentage of respondents who answered a given combination When examining this table, it can be seen that a high percentage of the respondents were urban dwellers felt that their area was either accessible (11%) or somewhat accessible (37%). The results of suburban dwellers tends to be more polarized that those of urban dwellers. The percentage of overall respondents who chose both the suburban and inaccessible combination was 2% while those who chose the suburban and very accessible

90

combination of 1%. This may indicate different perceptions of disability and accessibility in similar locations. The survey also presents a relatively high number of respondents who chose the suburban and somewhat accessible combination (16%). Hence, the overall trend in perception of space could be seen as relatively more accessible for urban environments in comparison to suburban environments. This maybe explained by factors such as distance decay, sprawl and lack of public transportation facilities in suburban environments. It providence some evidence for the spatiality of disability mentioned in chapters 1 and 2. Question 6 explicitly deals with the experience or witness of disability based discrimination among the respondents. Of the 79 respondents, a considerable majority (75.9%) responded as having experienced or witnessed such discrimination. Hence, within the sample population there appears to be some awareness of the explicit manifestations of ableism in society. Question 3 is of central importance to this study as it directly deals with the public understanding and view of what disability is. Accordingly, the respondents were presented with the following: Disability is: A medical condition A social construct A geographical construct A natural human variation All of the above None of the above Of the 80 participants, only 76 responded to this question. These responses are summarized in the following pie chart:

91

Figure 4- Definitions of disability

These results generally conform to the trends in the perception of disability found among scholars and policy makers as highlighted in chapters 1 and 2. It is evident that a majority of respondents (56.6%) view disability as a medical condition in line with the medical model and current definitions of disability in the medical sciences. This indicates a tendency towards equating impairment with disability among a majority of the respondents. The sample population reaffirms the dominant views in the larger context of western society. However, an interesting result of the survey is that there are many who also believed disability to be a social construct (38.2%) or natural human variation (36.8%). A significant aspect of these results is that contrary to popular belief, younger respondents (18-35) were more likely to identify disability as a medical condition that older respondents. This might be a reflection of the increasing pathologization of embodied states (such as ADHS or obesity) by the medical profession. 28.9% of the respondents felt that disability was a function of all the factors provided as survey options. What is interesting here is that although younger respondents represent a majority of those who

92

identified disability as a medical condition, it was also respondents of the age group 18- 25 who constituted a majority of those who selected the All of the above option. Again, this maybe indicative of the emergence of increasingly polarized views of disability as illustrated in this study. Furthermore, all 5 of the respondents who viewed disability as a geographical construct were cohorts of the age group 18- 25. This may represent an increasing receptiveness to or awareness of the geographical aspects of disability. However, none of these five respondents identified as being and individual with a disability. Section 2 Section 2 of the survey specifically focuses on the issue of disability, image and identity which was discussed in chapter 3. In this section respondents were provided with statements alluding to common beliefs and imagery associated with individuals with disabilities. The respondents were asked to express their stance on these statements by selecting an option on a scale from strongly agree to strongly disagree. Although this particular method does not provide the opportunity to gain detailed insights in to the views of participants, it does provide a useful framework to gain a general idea of attitudes and perceptions within the group. These statements focused on aspects such as gender, institutionalization, inclusive politics and opportunity. They drew a range of fragmented and even polarized responses, indicating a highly divergent spectrum of perceptions and beliefs among the sample population with respect to these aspects of disability. In terms of gender and disability, most respondents expressed the view that women with disabilities are more vulnerable than women without disabilities. Of the80

93

respondents, 88.6% either strongly agreed, agreed or somewhat agreed with this view. This may indicate a general awareness of the double handicap of being a woman with a disability. On the other hand, there is lower level of consensus on the socio-economic positioning of disabled women relatively to disabled men. As the following pie chart illustrates, there are a similar number of individuals who have views ranging from agree, somewhat agree, neutral, somewhat disagree in response to the statement women with disabilities are more vulnerable than men with disabilities. This divergence in opinion may indicate that the oppressed image of disabled individuals may overshadow the visibility of gender dynamics within this group. It could also mean that disability is viewed as a unitary category where the immense amount of diversity and power relations within this group go unrealized. This may explain as to why the vulnerability of women with disabilities is not taken in to consideration in the formulation of disability policy as discussed in chapter 4. It may also account for the sparse attention paid to practices such as the infanticide of baby girls with disabilities, the non-recognition of the high vulnerability of women with disabilities in Anti- AIDS campaigns or the alarmingly high level of abuse experienced by women with disabilities. Hence, the ambiguity regarding the state of disabled women in comparison to disabled men displayed by these survey results have important implications for understanding the images and beliefs that influence the understanding of the embodied experiences of disabled women by actors within a given social organization at large.

94

Figure 5 Gender, disability and vulnerability

An important field which most respondents agreed upon was that of disability and sexuality. Despite the asexual images and identities of disabled individuals projected by popular media, over 96% of the respondents did not perceive individuals with disabilities to be non- sexual beings. Of the 80 respondents, only one strongly agreed with the statement. A point that should be noted about the sample population is that of those respondents who identified with being disabled, a majority had learning disabilities and mental illnesses. None responded as having a disability which may entail physical deformity and only one indicated an impairment which entailed the loss of some physical functionality. Given that physical normalness and functionality are important images associated with sexuality, virility and fertility, the composition of the respondents and where relevant, their disabilities may have affected their perception of disability and sexuality.

95

Figure 6 Perceptions of disability and sexuality

Responses to the statement Disabled individuals should have the same marriage and reproductive rights as non disabled individuals also has a significant amount of approval by the participants (97% responding strongly agree- somewhat agree). This may be indicative of the trend towards a rights based society where practices such as forced sterilization are legally prohibited. However, it is important to note that these responses do not provide any information on attitude towards marriages between disabled and ablebodied partners. Neither does it provide information about the hierarchy of disability where some disabled individuals (with disabilities such as mild physical disability or learning disability) are perceived as deserving of greater reproductive rights than other disabled individuals (such as quadriplegics and mentally retarded individuals). Despite these limitations the survey results may indicate an increasing level of social sexual visibility for individuals with disability.

96

Another field/ statement that is met with a highly varied range of responses is that of institutionalization. The range of responses to the statement severely disabled individuals should be institutionalized is shown in the following pie chart:

Figure 7 Perceptions on disability and institutionalization

As shown above although 55.9% of respondents clearly disagree with this statement, 26% either agree with or are ambivalent towards the view that severely disabled individuals should be institutionalized. A 1990 study of individuals with disabilities in USA revealed that 6.7% of the total disabled population was institutionalized (Census of Population and Housing, 1990). While there has been no recent national level study of institutionalization of disabled individuals in USA, this indicates that institutional confinement still remains to be seen as a solution to disability. Given this background and the survey results, it could be said that the concept of community care for severely disabled individuals is currently underdeveloped in USA. This also has important implications for social preferences and the development of integrative disability policies.

97

Another statement which draws out a wide range of opinions is In todays society, people with disabilities have equal opportunities to education and employment. Although 68.4% of respondents did not agree with this statement, 23.8% felt that current social conditions provide equal opportunities in education and employment for individuals with disabilities. 7.5% of the respondents were neutral towards this statement. Even among those who either agreed or disagreed with the statement there was a significant amount of variation in degree as shown by the following pie chart:

It is interesting to note that there is an almost equal number of individuals who either strongly agreed (4) or strongly disagreed (5) with the statement. Further examination of the responses reveals that 3 of the 4 individuals who strongly agreed with the statement did not identify as having a disability, while 4 of the 5 people who disagreed with the statement identified as having a disability. This indicates that ones positioning as either disabled or able-bodied can influence their views regarding the inequalities faced by individuals with disabilities. Given that education and employment policies pertaining to disabled

98

individuals are often made by non disabled policy makers, such a result has important implications for the issue of disability, equality and policy. The field receiving the most diverse of responses where the distribution of choices along the scale was nearly evenly distributed was that containing the statement Technology creates a level playing field for people with disabilities. This distribution is shown by the following pie chart:

In this case, the number of individuals agreeing with the statement (39/ 44.2%) was nearly equal to the number disagreeing with the statement (36/ 41.2%). 10 respondents were neutral about the statement. Again, what is interesting is that most respondents identifying as having a disability disagreed with this statement (54%), while most respondents who did not have a disability agreed with this statement (64%). These percentages exclude both disabled and non disabled individuals who were neutral about the statement. Again, ones direct experience of disability appears to be a determining factor in their view on

99

technologys ability to nullify or overcome disability. Of the respondents 85.9% were aware of assistive devices and technologies. This result is extremely important given the increasing tendency towards the promotion of technological solutions to disability in western societies, as discussed in chapter 5. A surprising and encouraging result in the study of disability from a geographical perspective is the fact that 90% the respondents agreed to the statement The experience of the same impairment varies by location. This statement has been fundamental to the thesis of this study and appears to resound with an overwhelming majority of the respondents. It is also important to note the framing of this question. I deliberately refrained from using the word disability due to the ambiguity surrounding its meaning and definition. Rather, I used the word impairment to find out whether there might be some level of conscious or unconscious distinction between impairment and disability among the respondents. The fact that 90% agreed with the statement indicates that this maybe the case. These results are provided below:

100

Another point of general agreement in the survey is that of changes in the image of disability in USA over time; 66.6% of the 78 respondents who answered this question agreed with the statement that The image of disability in the U.S. has improved considerably over the past decade. Only 9% of the respondents disagreed with this statement while 24.4% opted to express a position of neutrality. This indicates an agreement of the changing face of disability in terms of its image, which as highlighted throughout this study, is both a product of and determinant of the embodiment in a given system of social organization. Hence, the high level of agreement among the participants regarding the influence of location/ space and time in the formation of the experiences and identities of disability provides strong support for the understanding of disability in spatiotemporal terms. This in turn provides a significant impetus for the study of disability through geography. The potential geographical approach of studying disability as a form of

101

social material embodiment in space and time is one such option that can be developed within this context. The last normative statement in this section deals with the politics of disability. The statement Policies and decisions pertaining to people with disabilities should be made by people with disabilities was met with agreement by 78.7% of the respondents, disagreement by 10% of the respondents and neutrality by 11.2% of the respondents. What is interesting about the composition of these responses is that all participants who disagreed with the statement did not have a disability. This maybe an indication of the ableism built in to our present form of social organization that results in paternalistic policies on disability by non disabled policy makers. It also lies at the heart actions for the disabled (instead of by the disabled or with the disabled) philosophy that is behind many of the disability related institutions such as legal, medical and social services in USA. Section 3 Section 3 of the survey primarily deals with the awareness and perceptions of contemporary disability legislation among the respondents. It first asks the respondents if they are aware of the Americans with Disabilities Act (ADA), the landmark US legislation that codified disability rights such as universal accessibility as well as due process and equal opportunity in education and employment. Of the 79 individuals responding to this question, 44 (55.7%) reported being aware of the ADA while 35(44.3%) had no awareness of its existence. In terms of the effectiveness of such legislation, 44.4% of the respondents believed that it had moderate to significant impact on the lives of individuals with

102

disabilities, while 1.3% believed that it had no impact. This opinion was expressed by a single respondent with a disability. It is also important to recognize that a majority of all respondents (54.4%) did not know/ were not aware of the impact of the ADA on the lives of individuals with disabilities. This group primarily consisted of respondents without disabilities. What is important about this result is that it indicates a general lack of awareness regarding the rights (legal) of individuals with disabilities as opposed to other oppressed minorities such as racial minorities and women. It also indicates that ones direct experience with disability significantly affected ones perception of the effectiveness of disability. On average, of the respondents who were aware of the impacts of the ADA, most disabled respondents indicated that it has moderate or no impact on the lives of individuals with disabilities, while most non- disabled respondents felt that it had significant impact on the lives of individuals with disability. This maybe indicative of the disjuncture between legislation and practice discussed in chapters 2, 4 and 5 which could be attributed to the lack of imperatives for implementation within our present ableist socioeconomic system. This section has also tried to incorporate international legislation by including the same questions for the UN Convention on the Rights of Persons with Disabilities. This convention is the only comprehensive document setting forth international standards on the rights of individuals with disabilities around the world. It was adopted in December 2006 and ratified only as recently as March 2007. According to the survey results, only 15 of the 80 respondents (18.8%) were aware of its existence. This maybe explained by the novelty of the convention, or the sparse media coverage given to its adoption. Due to these reasons

103

and also because not enough time has lapsed to determine the effectiveness of such legislation, 83.3% of the respondents reported that they do not know the impact it has/ would have on the lives of individuals with disabilities. Of those who did identify a level of impact (13 respondents), most (8/ 61.5%) felt that it would be of moderate impact while 3 (23.1%) felt that it would have no impact. Only 2 respondents (15.4%) felt that it would have any significant impact. These results indicate a general pessimism regarding the perceived impact of international disability rights legislation on the lives of persons with disabilities. The results from the responses to the ADA and UN legislation both have important implications for the effectiveness of a rights based approach to disability. As for the political activism and empowerment of individuals with disabilities covered in chapter 4 in the context of organizations created by women with disabilities and the emergence of such organizations and communities online covered in chapter 5, organizations by the disabled, for the disabled indicated as significantly empowering. Of 78 respondents, slightly over half (55.1%) were aware of any organizations or groups representing individuals with disabilities. However, all participants recognized the importance of collective action and inclusive activism for the wellbeing of individuals with disabilities. This is an encouraging indication and calls for the a greater visibility of organizations by disabled individuals, for disabled individuals for the creation of empowering spaces that redefine the embodiment of disability. I also used this section of the survey to determine the respondents perceptions of media representations of individuals with disabilities. They were given several choices to

104

select from, with the option of making more than one selection. The results of this field are quite informative and are summarized by the following pie chart:

Figure 8 Perceptions on media portrayal of disability What is fascinating about the above is that these responses closely correspond with the trend in portrayals of disabled individuals in popular media discussed in chapter 3. As shown by the chart, such individuals are represented primarily as either objects of sympathy or dependents. In the view of the respondents, theres also a tendency to glorify individuals with disabilities as inspirational heroes as indicated by 45% of the responses. However, the number of responses to the second option reveals that such inspirational heroes are not necessarily presented as independent individuals. Thirty percent of the respondents felt the all these descriptions can be used to vocalize the media representation of individuals with disabilities. One respondent did not identify with any of these descriptions. For me, the most interesting insights were provided by those who chose the other response and went on to provide their own descriptions.

105

The descriptions provided for media representation of individuals with disabilities by these participants are as follows: Invisible Impaired and second class Portrayal seems limited to either inspirational heroes or objects of sympathy, with no normal in between Definitely viewed as other Objects of pity and a-sexual bodies Troubled (learning/ mental disabilities mainly) The first description provides an important insight in to the invisibility of individuals both in media and society at large. This aspect of disability was explored in greater depth in Chapter 4. The non recognition of individuals with impairments in ableist settings has important implications for the oppression, impoverishment and dehumanization of individuals with disabilities behind closed doors. A similar view is presented by the respondent who describes media portrayal of individuals as impaired and second class. The aspect of media generated super human or dehumanized images and hence corresponding social expectations discussed in Chapter 3 are aptly summarized by the third description. The fourth provides an awareness and recognition of the othering process in media by the respondent. The next description not only brings attention to the images of pathos, but also the a-sexuality/ non sensuality of impaired or flawed bodies provided either explicitly in media portrayals of individuals with disabilities or as part of the sub-text. The final description provides an important view of how mainstream media constantly bombards the public with images of deranged murderers and deviants fueling the climate of fear

106

associate with what the respondent identifies as learning and mental disabilities. This is especially relevant in light of the demonization of mental illness carried out by popular media following the recent shootings at Virginia Tech University (April 16, 2007). It is further apparent by the fact that many individuals with such disabilities are found in incarceration facilities. According to the Department of Justice, 16% of all US inmates are individuals with severe psychiatric disabilities (1999 The same approach was used in framing the last two questions of section 3 which focused on respondents perceptions of the obstacles faced by individuals with disabilities and the primary objectives/ needs of individuals with disabilities. The responses to these two questions on obstacles and objectives are summarized below:

As represented above, 50% of the 78 respondents identified social integration as the greatest obstacle faced by individuals with disabilities. This is can be connected to the perspective of social materialist embodiment elaborated in Chapter 2, where those who do

107

not fit in to the norm of the particular structure of social organization are none integrated in to this structure, leading to the disablement of abnormal bodies. A significant portion of respondents felt that all three factors of physical accessibility, social integration and political representation combined to form the primary obstacle faced by individuals with disabilities. This field also allowed participants who chose the option of other to describe the obstacle that they thought was most pertinent. These descriptions are as follows: Providing care and affection to keep the morale high Access to affordable healthcare Socially imposed ideals of what a normal life is It is important for people with disabilities to be represented in an intelligent way in media, government and education

These responses provide insights into a few areas that I have not explicitly discussed in any of the preceding chapters. The first option highlighting care and affection to keep the morale high could potentially indicate two aspects of disability. On the one hand it may allude to the increasing isolation of individuals with disabilities, especially the elderly with disabilities. On the other hand it could also refer to the increasing emphasis placed on the creation of community care centers and other supportive facilities. As stated in the second description, access to affordable healthcare is a significant issue for individuals with disabilities in USA. This state of affairs could also be tied to the non-incorporation of the needs of impaired bodies in to the fundamental priorities of social organization. The fourth description provides considerable insight in to the normal/ abnormal dichotomy and the standardization of life discussed in all prior chapters. The final description corresponds with the policy approach to disability which can be used to create changes in the images and discourses associated with disability and hence the embodiment of

108

disability. It is interesting to compare this particular response to the results of the next field which asks for the respondents views on the ultimate objectives of individuals with disability. Accordingly, slightly over half (53.2%) identified leading a normal life as the ultimate objective of such individuals. Independence was seen as the next most important objective (43%), while social integration was identified as the main objective by 34.5% of the respondents. Fifty six point three percent felt that leading a normal life, independence, political representation and social integration were all equally vital to such individuals. Interestingly, political representation was seen as the ultimate objective by the least number of respondents (10%). The other response category yielded these detailed responses: I dont know, I cant generalize about what all or most such individuals want Disabled people hope to be treated with respect and intelligence without fear of trying new things Self- acceptance Not to be discriminated, have access to mobility, to be able to have the kind of life they want Really depends on the individual These responses represent a focus on the individual rather than the more generalized options provided in the survey. I especially found the response self- acceptance to be highly fascinating. This places an emphasis on disability as an internal individual process and uniquely personal lived experience. The scope of my thesis does not extend to this level of analysis; however, it remains an important aspect of understanding of disability. I have situated disability on a broader canvas of social organization, focusing on the spatiotemporal embodiment of disability rather than the psychology of disability. This

109

illustrates the importance of not only developing geographical perspectives of disability, but also adopting an interdisciplinary approach towards the understanding of disability at its different levels and forms. Given factors such as a relatively small sample size (80), the use of the internet to conduct the survey (which may have excluded many individuals who do not access or use the internet) and limited geographical scope (primarily New England, USA), it is not practical to extrapolate these findings to the general population. However, the results of the survey serve to reconfirm the postulations and propositions made in the previous chapters. These observations can be summarized as follows: There is a considerable divergence in the classifications, definitions and perceptions of disability. However, there is also significant agreement (92%) among the sample population on spatial variations in the experience of a given impairment Ones views on disability are greatly affected by whether one has a disability Location, image, media portrayal and social organization interlink to form disabling spaces Disability is not purely a medical condition or deficiency The study of disability requires a multidisciplinary approach that incorporates the medical, social, spatial, individual and institutional aspects of disability

110

Chapter 7: Discussion and Conclusion This study has shown that disability could be examined and defined at different levels of analysis, ranging from the internal individual experiential level to the broader framework of social structures and organizations. It illustrates how disability is a profoundly spatial and hence geographical experience, be it at the microcosmic level of functionality and navigation or the macrocosmic level of social organization based on social materialist embodiment. As such, it elaborates how Geography can be an ideal meeting ground for the multiple theories and schools engaged in the study of disability both within the medical and social models. Most importantly, it has shown how spacio-temporal variations have led to different embodiments and conceptualizations of disability in space and time. This indicates that there is no necessary relationship between impairment and disability. In fact during the course of this study, my discussions with several individuals with impairments indicated that they did not necessarily identify as being disabled. This is primarily because they did not find their impairments to be disabling experiences within their respective societies and environments. As mentioned in the introduction, a primary motivation for this study was to illustrate how the discipline of geography could significantly contribute towards the understanding of the complex dynamics of disability. For this purpose I have placed my study both within the broader framework of disability studies and the disciplinary scope of geography to demonstrate how Geography could enrich and be enriched by the study of disability. Chapters 1, 2 and 3 provided the foundation for such an analysis based on social material embodiment which is a concept widely used in Human Geography. These

111

chapters explain how social material embodiment characterized by a given form of social organization lead to the creation of abnormality and hence disability which is maintained by the power structures, discourses, imagery and identities of that organization. It also shows how the disablement of impairment can vary based on the varying forms of social organization produced by the constantly changing, merging and diffusing process of social material embodiment over space and time. Chapters 4 specifically focused on the oppression resulting from such embodiment in the context of impoverished disabled women. Chapter 5 was used to explore the dominant disability policy imperative, which is the normalization of impairments through science and technology. These two chapters on the practical realities indicated that although corrective measures such as rights based legislation and assistive technologies may influence certain disabled individuals at the personal level in terms of functionality, they do not address the root causes for the creation, reproduction and embodiment of disability in society. It is within this context that I advocate for the development of geographical perspectives on disability such as that of social material embodiment in order to facilitate fundamental and empowering changes in the lives of individuals with disabilities. However, I am not saying that the medical aspects of impairment including the physiological pain and suffering that maybe associated should be ignored in forming disability related policies. Nor am I saying that legislative frameworks to ensure the rights and liberties of individuals with disabilities are devoid of value. I recognize these as

112

fundamental elements affecting the lives of individuals with disabilities, yet are in themselves insufficient for a comprehensive and holistic understanding of disability. Chapter 6, which features the survey on disability conducted as part of this study is perhaps the most informative chapter in this stuy. It provides ample evidence for the areas of examination covered in chapters 1-5. For example, it shows how the conceptualization of disability has expanded to include non-traditional categories such as learning disabilities that are still not recognized as disabilities in many developing nations. It also indirectly brings attention to the increasing inclusion of previously normal conditions such as obesity or acne disorders as disabilities. It clearly indicates how theres a considerable fragmentation in views surrounding issues such as gender, opportunity, institutionalization and participation. It further illustrated how these perceptions varied by factors such as ones identification with disability and area of residence. Given these findings, this study has made me realize that disability is an area filled with many ambiguities and murky waters where one individuals disability is another individuals ideal based on the location of a given impairment within time and space. While acknowledging the merits of other approach to analysis, this understanding highlights the importance of viewing disability in a geographical perspective. Given the general reluctance of geographers to view disability as geographical concept, I have extensively illustrated how geography is intimately connected to the embodiment of disability to underscore how and why the discipline could and should consider the study of disability as a scholarly priority.

113

Potential Areas for Future Studies Given this research imperative, I have identified several paths that could be taken for the future study of disability from a geographical perspective. These include the following: Cross national analysis of disabling places, spaces and social organizations This research project revealed that most of the studies conducted on disability thus far have had a predominantly western focus. Given that disability does indeed vary spatiotemporally and that it severely affects individuals in none western countries (as described in Chapter 4), there is an urgent need to expand the scope of Disability Studies to an international level. This requires the building of multidisciplinary international partnerships for the study of disability. At a more fundamental level, it also requires the maintenance of disability related data and statistics at an international level. The paucity of data was a major obstacle that I faced while trying to draw international comparisons as part of this project. Verra Chouniard, a geographer at Mc Master University has recently embarked on a cross country analysis of women with disabilities. Similarly Elizabeth Matthews announced the launch of an international comparative study of deaf education on April 19, 2007. These are highly encouraging developments that indicate an increasing scope and opportunity to apply geographic principles to the understanding of disability. Global disability mapping During recent disaster events such as the Asian Tsunami (2004) and Hurricane Katrina (2005), the lack of information regarding the needs and location of individuals with disabilities led to a disproportionate level of mortality among this vulnerable population. Recent emergency management initiatives have acknowledged the need for an explicit

114

incorporation of individuals with disabilities in emergency and evacuation plans. This has created a need for services such mapping the dispersion of individuals with disabilities using GIS technology. Similarly, it has opened up a new area of inquiry in the field of Risk Assessment and Hazard Management. In fact, I have already started working with the Sri Lanka Confederation of Handicapped Individuals to map households with one or more members with disabilities in the South Western province of Sri Lanka. This is of significant importance given the invisibility experienced by such individuals during the Tsunami relief, compensation and readjustment process. Examining personal lived experiences of disability Geographers also have the opportunity to collaborate with Psychologists, Sociologists and Anthropologists and individual stakeholders in understanding the personal lived experiences of disability through the unique embodiment of individual impairment. This can be achieved through what Richa Nagar (2002) calls collaborative praxis and scholarship through biography. Such approaches will be significant in developing inclusive, empowering and participatory models of development for individuals with disabilities as highlighted in Chapter 4. The suggestions above are only few of the many pathways that can be taken by Geographers to improve our understanding of disability and its related dynamics. This paper has shown that Geographers have been traditionally reluctant to explore the field of disability due to the false assumption that disability is a purely medical issue or due to underlying ableism within the discipline. However, as highlighted in the course of this study, disability is a highly spatiotemporal experience, determined by complex geographic

115

interactions and processes such as social material embodiment. In light of these facts, it is my sincere hope that the field of geography will actively utilize its significant theoretical, methodological and ontological potential for the understanding of disability.

116

Bibliography Abberly, P. "The Concept of Oppression and the Development of a Social Theory of Disability." Disability, Handicap and Society 2 (1967): 5-21. Altman, Barbara and Cynthia Bowman. International Views on Disability Measures: Moving Towards Comparative Measure. London: JAI Press, 2006. Barile, Maria. "Globalization and ICF Eugenics: The More things Change the More they Stay the Same." Disability Studies Quarterly 23(2) (2003): 208-223. Barnartt, Sharon and Scotch. Disability Protests: Contentious Politics, 1970- 1999. Washington D.C.: Gallaudet, 2003. Barnes, Colin and Mercer. Implementing the Social Model of Disability: Theory and Research . London: Disability Press, 2005. Barnes, Colin and Mercer. Independent Futures; Creating user led disability services in disabling societies . New York: Policy Press, 2006. Barton, Len. Disability and Dependency. New York: Routledge, 1989. Brown, Steven. "What is Disability Culture?." Disability Studies Quarterly 22(2) (2002): 96-108. Brown, Steven. Disability and Love. -1 Jul. 2002. Organization on Disability Culture. 4 Apr. 2007. <http://www.cds.hawaii.edu/dsq>. Bruyere, Susanne, et al. "Information Technology and the Workplace: Implications for Persons with Disabilities." Disability Studies Quarterly 25(2) (2005). Burgstahler, Sheryl. "Gender Differences in Computer- Mediated Communication Among Adolescents with Disabilities: A Case Study." Disability Studies Quarterly 25(2) (2005).

117

Butler, Ruth and Parr. Mind and Body Spaces: Geographies of illness, impairment and disability. New York: Routledge, 1999. Butler, Ruth. "Double the trouble or twice the fun? Disabled bodies in the gay community." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 221-240. Butler, Ruth. "New Geographies of illness, impairment and disability." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 1-25. Cairncross, Frances. The Death of Distance: How the Communications Revolution Will Change Our Lives. Boston: Harvard Business School Press, 1997. Campbell, Jane. Disability Politics: Understanding Our Past, Changing Our Future. London: Routledge, 1996. Canguilhem, Georges. " Monstrosity and the Monstrous." The Body: A Reader. Ed. Fraser Mariam. New York: Routledge, 2005. 187-195. Carter, Deborah. "Rhetoric and place in the 'mental deficiency' asylum." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 70-98. Casino, Vincent. "Enabling Geographies? Non- Governmental Organizations and the Empowerment of People Living with HIV and AIDS." Disability Studies Quarterly 21(4) (2004): 19-29. Charlton, James. Nothing About Us Without Us: Disability Oppression and Empowerment. California: University of California Press, 2000.

118

Chaudhry, Vandana. "Rethinking the Digital Divide in relation to Visul Disabilities in India and the United States: Towards a Paradigm of "Information Inequity"." Disability Studies Quarterly 25(2) (2005). Chouinard, V. "Making Space for Disabling Differences: challenges ableist geographies." Environment and Planning: Disability and Society 15 (1997): 379-387. Claiborne, Lise. "Ditching Dualism: Education Professionals View the Future of Technology and Disabilities." Disability Studies Quarterly 25(3) (2005): 14-26. Corbett, Toole. "Sex, Disability and Motherhood." Disability Studies Quarterly 22(4) (2002): 81-101. Csordas, Thomas. Perspectives on Embodiment. New York: Routledge, 1999. Curry, Milton. A Black Manifesto. 4 Mar. 2007. Appendex. 20 Mar. 2007. <http://www.appendx.org/issue1/curry/index1.htm>. Nelson, Daniel. Women, sex and disability - a triple taboo. 11 Jun. 2003. Disability Knowledge and Research. 6 Feb. 2006. <http://209.85.165.104/search?q=cache:jkkAL9df1OcJ:www.disabilitykar.net/docs/sto ries_women.doc+disability+women+aids&hl=en&ct=clnk&cd=4&gl=us>. Deegan, Mary Jo. Women and Disability: The Double Handicap. New York: Transaction Publishers, 1984. Deutsch, H, et al. "Defects": Engendering the modern body. Ann Arbor: University of Michigan Press, 2000. Dajani, Karen. "What's in a Name? Terms Used to Refer to People with Disabilities." Disability Studies Quarterly 21(3) (2001): 196-209.

119

Danforth, Scott. "Liberation theology of disability and the option for the poor." Disability Studies Quarterly 25(3) (2005): 128-142. Davis, Allison. "A Disabled Person's Perspective on Disability." Enable (2004) . Davis, Lennard. "Crips Strike Back: The Rise of Disability Studies." American Literature History 11(3) (1999): 500-512. Davis, Lennard. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, 1995. Davis, Lennard. The Disability Studies Reader. London: Routledge, 1997. Deegan, Mary Jo and Nancy Brooks. Women and Disability: The Double Handicap. New Jersey: Transaction, 1984. Diamond, Jared. Guns, Germs and Steel: The Fates of Human Societies. New York: W. W. Norton & Company, 1997. Dorn, Michael. "Disability as Spatial Dissidence." Diss. Pennsylvania State University, 1994. Dorn, Michael. "The moral topography of intemperance." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 46-70. Dorn, Mike. "Social theory, body politics and medical geography: Extending Kearns' invitation." Professional Geographer 46(1) (1994): 106-110. Dyck, Isabel. "Body troubles: women, the workplace and negotiations of a disabled identity." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 119-138.

120

Eames, Ed. "Bridging Difference within the Disability Community: The Assistance Dog Movement." Disability Studies Quarterly 21(3) (2001): 55-66. Ervelles, Nirmala. "Disability and the Political Economy of Place: Case Study of a Voluntary Organization in South India." Disability Studies Quarterly 21(4) (2001): 519. Fawcett, . Feminist Perspectives on Disability. London: Pearson Education, 2000. Fleischer, Doris and Zames . "Disability Rights: The Overlooked Civil Rights Issue." Disability Studies Quarterly 25(4) (2005). Freund, Peter. " Bodies, Disability and Space: The Social Model and Disabling Spatial Organization." The Body: A Reader. Ed. Fraser Mariam. New York: Routledge, 2005. 182-187. Galvin, Rose. "The Making of the Disabled Identity: A Linguistic Analysis of Marginalization." Disability Studies Quarterly 23(2) (2003): 149-178. Ganahl, Dennis. "The Exclusion of Persons with Physical Disabilities from Prime Time Television Advertising: A Two Year Quantitative Analysis." Diss. Southern Illinois University, 2000. Gersghick, Thomas. "Toward a Theory of Disability and Gender." Signs 25(4) (2000): 1263-1268. Gleeson, Brendan . Geographies of Disability. London: Routledge, 1999. Gleeson, Brendan. "A Geography for Disabled People?." Transactions of the Institute of British Geographers 21(2) (1996): 387-396.

121

Gleeson, Brendan. "Can technology overcome the disabling city?." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 98-119. Golledge, Reginald. "Geopgrapy and the Disabled: A Survey with Special Reference to Vision Impaired and Blind Populations." Transactions of the Institute of British Geographers 18(1) (1993): 63-85. Hahn, Harlan. "Environmental Barriers and the Use of Health Care Facilities by Adults with Physical Disabilities." Disability Studies Quarterly 23(1) (2003): 75-95. Haller, Beth. "Profitability, Diversity, and Disability Images in Advertising in the United States and Great Britain." Diss. Townson University, 2000. Hardin, Marie. "Marketing the Acceptable Image: Wheelchair Athletes, Sport related Advertising and Capitalist Hegemony." Disability Studies Quarterly 23(1) (2003): 108125. Harvey, David. The Condition of Postmodernity: An Enquiry into the Origins of Cultural Change. Oxford: Blackwell Publishing, 1979. Haualand, Hilde. "Uniting Divided Worlds: Identity, Family and Education in the Life Projects of Deaf and Hard of Hearing Young People." Disability Studies Quarterly 23(2) (2003): 75-88. Haynes, Michael. "Trouble Signs: Disability, Hollywood Movies and the Construction of a Discourse of Pity." Disability Studies Quarterly 23(2) (2003): 114-132. Head, Janus. "What Has Happened to Feminism?." Continental Feminist Reader. Ed. Ann Cahill. New York: Rowman and Littlefield, 2003. 320-321.

122

Hogg, Gillian. "Does He Take Sugar? The Disabled Consumer and Identity." British Academy of Management Annual Conference, . 22 Aug. 2004. Holy, Louise. "Childhood Disability and Ability: Disabliest geographies of mainstream schools." Disability Studies Quarterly 24(3) (2004): 89-100. Huang, Jin and Guo. "Building Social Capital: A study of the Online Disability Community." Disability Studies Quarterly 25(2) (2005). Imrie, R.F. Disability and the City. London: Paul Chapman, 1996. Imrie, Rob. "The body, disability and Le Corbusier's conception of the radiant environment." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 25-46. Jacobs, Gordon. "Potential Maximization: Toward a Micro- Sociological Approach in Disability Studies." Disability Studies Quarterly 22(1) (2002): 59-73. Jaeger, Paul and Cynthia Bowman. Understanding Disability: Inclusion, Access, Diversity, and Civil Rights. London: Greenwood, 1996. Jenkins, Richard. "Disability and Social Stratification." The British Journal of Sociology 42(4) (1991): 557-580. Jenkins, Richard. Questions of Competence: Culture, Classification and Intellectual Disability. Cambridge: Cambridge University Press, 1999. Johnstone, Christopher. "Disability and Identity: Personal Constructions and Formalized Supports." Review of Disability Studies 3(1) (2006). Kaplan- Myrth, Nili. "Blindness Prevention in Mali: Are Improvements in Sight?." Disability Studies Quarterly 21(3) (2001): 91-103.

123

Kasnitz, Devva. "Anthropology in Disability Studies." Disability Studies Quarterly 21(3) (2001): 2-17. Keys, Christopher and Dowrick. People with Disabilities: Empowerment and Community Action. London: Hawthorn Press, 2001. Kirkland, Anna. "What's at Stake in Fatness as a Disability?." Disability Studies Quarterly 26(1) (2006). Kitchin, Rob. "Using Participatory Research Approaches in Geographical Studies of Disability." Disability Studies quarterly 21(4) (2001): 61-69. Komardjaja, Inge. "Independent living and self- determination of women with physical disabilities in Bandung, Indonesia." Disability Studies Quarterly 24(3) (2004). Kuppers, Petra. Disability and Contemporary Performance: Bodies on the Edge. New York: Routledge, 2003. Lefebvre, Henri. The Production of Space. London: Blackwell, 1991. Levy, Susan. "Out of Place in Sheltered Housing? Insider and Outsider Perspectives." Disability Studies Quarterly 21(4) (2001): 52-61. Lewis, Vistoria. "The Theatrical Landscape of Disability." Disability Studies Quarterly 24(3) (2004): 103-125. Liachowitz, Claire. "Disability as a Social Construct: Legislative Roots." Lessons from the First Ywenty Years of Medicare. Ed. Mark Pauley. Pennsylvania: PENN Press, 1989. Livingston, . Insights from an African History of Disability. North Carolina: Duke University Press, 2006.

124

Lloyd, Margerett. Does She Boil Eggs? Towards a Feminist Model of Disability. Manchester: Taylor and Francis, 1992. Lubet, Alex. "Can Disability Studies Survive and Prosper within Medically- Modeled Curricula." The Review of Disability Studies: An International Journal 1(1) (2004). Markotic, Nicole. "Re/Presenting Disability and Illness: Foucault and 20th Century Fiction." Disability Studies Quarterly 23(2) (2003): 178-192. Martz, Erin. "Acceptance of Imperfection." Disability Studies Quarterly 21(3) (2001): 160-165. McBridge, Michael and Panol . "Disability Images in Print Advertising: Exploring Attitudanal Impact Issues." Disability Studies Quarterly 21(2) (2001): 124-153. Metzel, Deborah. "The Illusion of Inclusion: Geographies of the Lives of People with Developmental Disabilities in the United States." Disability Studies Quarterly 21(4) (2001): 114-128. Miller, Sheila. Disability and the Black Community. London: Hawthorn Press, 2003. Nagar, Richa. "Footloose Researchers, 'Traveling' Theories and the Politics of Transnational Feminist Praxis." Gender, Place and Culture 9(2) (2002): 179-186. Norden, Martin. The Cinema of Isolation. New Jersey: Rutgers Press, 2005. O'Brien, Ruth. Bodies in Revolt: Gender, Disability, and a Workplace Ethic of Care. New York: Routledge, 2005. Oliver, M. "Disability and Dependency: a Creation of Industrial Societies." Disabling Barriers- Enabling Environments. Ed. M Oliver. London: Sage, 1993.

125

Oliver, Michael. Understanding Disability: From Theory to Practice. London: Palgrave Macmillan, 2002. Pengra, Lilah and Godfrey . "Different Boundaries, Different Barriers: Disability Studies and Lakota Culture." Disability Studies Quarterly 21(3) (2001): 36-53. Pfeiffer, David. "Comment on the Social Model." Disability Studies Quarterly 22(4) (2002): 234-235. Pfeiffer, David. "Disability Studies and the Disability Perspective." Disability Studies Quarterly 23(1) (2003): 142-148. Pfeiffer, David. "The Changing Nature of Disability Policy and Its Distributive Impacts." Disability Studies Quarterly 21(4) (2001): 151-169. Pfeiffer, David. "The Philosophical Foundations of Disability Studies." Disability Studies Quarterly 22(2) (2002): 3-23. Pothier, Dianne and Devlin. Critical Disability Theory: Essays in Philosophy, Politics, Policy and Law. Canada: UBC Press, 2006. Power, Marcus. "Geographies of Disability and Development in Southern Africa." Disability Studies Quarterly 21(4) (2001): 84-97. Rapley, Mark. The Social Construction of Intellectual Disability. Cambridge: Cambridge University Press, 2004. Ratliffe, Clark and Haley . "Toward a Non- Dualistic Disability Paradigm: Beyond Connectedness." Disability Studies Quarterly 22(2) (2002): 126-135.

126

Richards, Penny. Points of Entry: Disability and the Historical Geography of Immigration. -1 Jul. 2004. Society for Disability Studies. 3 Apr. 2007. <http://www.dsq-sds.org>. Riley, Charles. Disability and the Media: Prescriptions for Change. Boston: University Press of New England, 2005. Roach, Andrew. "In Search of a Paradigm Shift." Disability Studies Quarterly 23(3) (2003). Rose, M.L.. Corporealities: Discourses of Disability. Ann Arbor: University of Michigan Press, 1993. Schacht, Robert. "Engaging Anthropology in Disability Studies." Disability Studies Quarterly 21(3) (2001): 17-36. Scotch, Richard and Schriner . "Disability as Human Variation: Implications for Policy." Annals of the American Academy of Political and Social Science 549 (1997): 148-159-. Scotch, Richard. "Paradigms of American Social Research on Disability." Disability Studies Quarterly 22(2) (2002): 23-34. Seelman, Katherine. "Universal Design and Orphan Technology: Do We Need Both?." Disability Studies Quarterly 25(3) (2005). Shakespeare, Tom and Corker. Disability/ Postmodernity: Embodying disability theory. London: Continuum, 2002. Shuttleworth, Russell. "Exploring Multiple Roles and Alligiances in Ethnographic Process in Disability Culture." Disability Studies Quartery 21(3) (2001): 103-113.

127

Smith, Phil. ""There's No Treatment Here": Disability and Health Needs in A State Prison System." Disability Studies Quarterly 25(3) (2005): 43-56. Smith, Phil. "Whiteness, Normal Theory and Disability Studies ." Disability Studies Quarterly 24(2) (2004). Snyder, Sharon and David Mitchell. Cultural Locations of Disability. Chicago: University of Chicago, 2005. Society for Disability Studies, . Conversations and Connections across Race, Disability and Identity. 1 Jun. 2005. Society for Disability Studies. 2 Apr. 2007. <http://www.uic.edu/orgs/sds/Final%20Program%20for%20Printing.pdf>. Society for Disability Studies. Hurricane Katrina, Race, Class, Tragedy, and Charity. Midspring: SDS, 2005. Stables, Jabe. "Caught in the Cinderella trap? narratives of disabled parents and young carers." Mind and Body Spaces: Geography of illness, impairment and disability. Ed. Ruth Butler. London: Routledge, 1999. 256-269. Steinstra, Deborah. "Gender Differences in Computer- Mediated Communication Engaging Citizens with Disabilities in eDemocracy." Disability Studies Quarterly 25(2) (2005). Stephens, Elizabeth. Twenty First Freak Show: Recent Transformations in the Exhibition of Non-Normative Bodies. 6 Mar. 2005. Center for the History of European Discourse. 1 Apr. 2007. <http://www.ched.uq.edu.au/index.html?page=38948>. Stone, Karen. Awakening Disability: Nothing About Us Without Us. San Francisco: Volcano Press, 1997.

128

Tabatabei, Manoucher. "Information Technology for Protected Individuals: survey of Current Status." Disability Studies Quarterly 22(2) (2002): 159-174. Tichkosky, Tanya. "Coming Out Disabled: The Politics of Understanding." Disability Studies Quarterly 21(4) (2001): 131-139. Titchkosky, Tanya. "Clenched Subjectivity: Disability, Women, and Medical Discourse." Diss. St. Francis Xavier University, 2005. Tolin, Tom. "Critique of Economic Analysis of ADA." Disability Studies Quarterly 23(1) (2003): 130-142. Tregaski, C. Constructions of Disability: Researchin g Inclusion in Community Leisure. New York: Routledge, 2003. Tregaskis, Claire. "Identity, Positionality and Power: Issues for Disabled Researchers ." Disability Studies Quarterly 24(2) (2004). Willet, Mary. "Liminality and Disability: Rights of Passage and Community in Hypermodern Society." Disability Studies Quarterly 21(3) (2001): 137-152. Willett, Jefferey and Deegan . "Liminality and Disability: Rights of Passage and Community in Hypermodern Society." Disability Studies Quarterly 21(3) (2001): 137152. Winter, Jerry. "The Development of the Disability Rights Movement as a Social Problem Solver." Disability Studies Quarterly 23(1) (2003): 33-61. Zolkowska, Teresa and Blaszkiewicz . "European Union Policy Toward People with Disabilities." Disability Studies Quarterly 22(4) (2002): 217-224.

129