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Deafness in Swaziland: a social-cultural study of deafness at the Siteki School for the Deaf Buchner, Denise Lynn 1998

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DEAFNESS IN SWAZILAND: A Social-Cultural Study of Deafness at the Siteki School for the Deaf by Denise Lynn Buchner B.Ed., The University of Calgary, 1990  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF T H E REQUIREMENTS FOR THE DEGREE OF MASTER  OF ART  in  T H E F A C U L T Y OF GRADUATE STUDIES Centre for the Studies of Curriculum and Instruction We accept this thesis as conforming to the required standard  T H E UNIVERSITY OF BRITISH COLUMBIA JULY 1998 © Denise Lynn Buchner, 1998  In presenting  this  thesis in partial  fulfilment  of  the  requirements  for  an advanced  degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of  this thesis for scholarly purposes may be granted  department  or  by  his  or  her  representatives.  It  is  by the head of  understood  that  copying  my or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department of  C S CCL7  The University of British Columbia Vancouver, Canada Date  DE-6 (2/88)  Ay<^4  gift,  ABSTRACT  Although the social and cultural position of deafness in Western nations is a topic which has received considerable attention, very little is known about the social experience of being deaf and living in a non-Western culture. The composition which follows derives from data which were collected over a ten month period and offers an interpretation of the social experience of being deaf in the Kingdom of Swaziland. By engaging narratives, images and discourse the composition henceforth tells a story about deafness in Swaziland which encompasses issues having to do with the deaf community in Swaziland, the creation of identity and the experience of personhood and liminality. From this project it becomes known that the experience of being deaf is a social construct which cannot be defined cross-culturally. Further, this project offers a view of deafness which describes deaf individuals in Swaziland who exist as socially valued members of their hearing communities.  ii  T A B L E OF CONTENTS  Abstract  ii  Table of Contents  iii  Acknowledgements  v  Picture - Siteki School for the Deaf  vii  Maps  viii  P A R T ONE - P R E P A R A T I O N  ix  Chapter One  Introduction  1  Overview Statement of Purpose Research Questions  1 5 5  Literature Review  6  Cultural and Ethnic Identity Culture Theory Disability and Culture Deafness in Western Nations Demographics The Deaf Community Education for Deaf Students Deafness in Non-Western Nations Disability in Non-Western Nations Demographics Social and Cultural Considerations Etiologies Rehabilitation Efforts Summary  8 8 12 14 14 15 18 23 24 24 25 28 29 31  Background Information and Method  33  Swaziland Education in Swaziland The Siteki School for the Deaf Method  33 34 35 39  Chapter Two  Chapter Three  iii  P A R T TWO - T H E STORIES  47  Chapter Four  Preface  48  Chapter Five  Communication and Sign Language  52  Chapter Six  Living in a Family  68  Chapter Seven  Deaf in Hearing Spaces  80  Chapter Eight  Marriage and Children  90  Chapter Nine  Discussion  102  Deaf Community in Swaziland The Creation of Identity The Experience of Personhood and liminality New Perspectives Future Directions  102 105 106 108 110  Works Cited  113  Appendix A - Kinship in Swaziland  118  Appendix B - Letter to the Siteki School for the Deaf  123  Appendix C - Letter from the Siteki School for the Deaf  124  Appendix D - Ethics Review form  125  Appendix E - Letter of Consent  126  Appendix F - Letter of Consent from Siteki School for the Deaf  127  iv  ACKNOWLEDGEMENTS  The composition which fills the pages to follow is a piece of work which has been unfolding, in one way or another, for the past six years. At its origin, this project started as a lingering question which followed me about and reminded me that sooner or later I would have to gather my resources and find a way to tell its story. Now, as I lay my pen down and declare my task complete, I would like to gratefully acknowledge the many individuals without whom this project could never have evolved.  First and foremost I would like to thank the students from the Stikei School for the Deaf and members from the adult deaf community in Swaziland, for they are the true authors of this story. Indeed, I feel privileged to have had the opportunity to narrate their story and would like to thank them for their friendship as I entered their community and asked them to share their life stories with me. I would also like to thank the teachers, staff and administration from the Siteki School for the Deaf for the warm reception they offered me as I entered their classrooms and school yard and for the narratives which they contributed toward this project. I would also like to thank the Swaziland National Association for the Deaf for welcoming me into their community and for inviting me to their many activities.  Further, I would like to thank Father Maurice from the Good Shepherd Mission in Siteki for not only providing us with a home during our stay in Swaziland but also for granting us the opportunity to be touched by a community which did not hesitate to embrace our presence. As well, I would like to offer sincere thanks to the sisters at St. Margaret's  Convent in Manzini for the many hours spent socialising while we tried to access their telephone line and communicate the course of this project to our Canadian comrades.  I would also like to thank my advisors, Dr. Janet Jamieson, Dr. Bill McKellin and Dr. Jackie Baker-Sennett from the university of British Columbia for their guidance and support through the many stages of this project.  Additionally, I would like to thank the International Development Research Centre, The Syd Vernon Foundation and the University of British Columbia for their financial support of this project.  Finally, I would like to acknowledge the support received from my family as I drew up plans and ventured forth to undertake this task. Most especially I would like to thank my partner for seeing the value in this project and so enthusiastically packing his suitcase and our young son who so easily became a child of Swaziland and, in doing so, acted as our ambassador whose unbiased view of the world allowed him to effortlessly enter the community from which this project emerges.  VI  MAPS  SWAZILAND  0  20  40  mi  SOUTHERN AFRICA  Vlll  PART  ONE  PREPARATION  C H A P T E R ONE Introduction  Overview  Until recently, deafness has commonly been referred to as a disability. However, recent investigations into the study of deafness have described those who are deaf not in terms of deviance, but as members of cultural and ethnic minorities. Indeed, the notion of culture has become so closely aligned with the study of deafness that the term, "Deaf community" has been coined to describe the repeated phenomenon of Deaf individuals 1  joining together to form cohesive groups.  As with any inquiry which deals with the study of culture or ethnicity, Deaf communities can best be understood within a framework of culture theory. In 1969, Fredrik Barth presented his theory on ethnic group boundaries. According to Barth, ethnic groups are clusters of individuals who similarly define themselves within a boundary. Within an ethnic group boundary members define themselves according to features, such as language and religion, which they share and distinguish themselves by identifying their group as possessing features which are different from other ethnic groups. Further, cultural group boundaries, from Barth's perspective, often overlap with the boundaries of other ethnic groups. The internal workings, or the structure of ethnic groups within their boundaries, is perhaps best understood through the work of Hannerz (1992) who has described ethnic In keeping with academic and professional publication standards, I have attempted to distinguish between Deaf, capitalised, to refer to individuals who perceive themselves to be members of a distinct Deaf community and deaf, not capitalised, to refer to individuals with hearing losses. Because Deaf community in Swaziland has not yet been officially recognised, all references to Deafness in Swaziland will not be capitalised. For the purpose of this composition, deafness refers to individuals who are unable to comprehend speech and were either born deaf or became deaf early in life. 1  1  groups as clusters of sub-cultures. From Hannerz's perspective, ethnic groups are similar to patches, or sub-cultures, on a mosaic whereby individuals possess realms of cultural knowledge through which they can identify themselves as either belonging to, or not belonging to, an ethnic group. On yet another level, the study of culture theory has benefited from the work of Geertz (1963; 1973) who has claimed that the tendency for human beings to participate in and create cultural systems is a basic human characteristic. According to Geertz, culture is a system of symbols which human beings employ to create meaning and mutual understanding in their lives.  In Western nations Deaf communities are often said to result from the stigmatised societal positions frequently assigned to disabled individuals, including deaf individuals (Goffman, 1963; Johnson & Erting, 1989). Similarly, Murphy, Scheer, Murphy, and Mack (1988) have used the term liminal to describe disabled North Americans as neither members nor non-members of North American society. According to Murphy et al. (1988) disabled individuals within North American society are neither rejected nor accepted, they are rather pushed to the fringes of society where their human conditions can be comfortably distanced from the mainstream of society.  Research which has attempted to understand the social organisation of deaf communities has identified language, and in particular the ability to engage in oral discourse, as a major factor of liminality which has compelled deaf individuals in North America to associate themselves as belonging within a distinct ethnic boundary (Higgins, 1980; Johnson & Erting, 1989; Schein, 1987; Siple, 1978). Certainly, within the Deaf community, North Americans who are deaf find a sense of belonging where they are able to communicate with ease and discover a common identity.  2  Without doubt, issues having to do with sign language are at the core of what many members of the North American Deaf community believe to be an attempt to suppress their culture by denying them access to their natural and rightful language (Trybus, 1980). Although American Sign Language has been recognised in North America as an official language for nearly two decades, its position in the language development of deaf children continues to center in debates over educational policies for students who are deaf (Johnson, Liddell, & Erting, 1989). Even though members of the Deaf community have repeatedly insisted that deaf children be educated according to principles which recognise them as being language different, not language deficient, many present-day educational policies for deaf students continue to view deaf children as being in need of skills which will first, and most importantly, enable them to communicate using English language skills (Johnson et a l . , 1989). To many, educational policies which continue to view deaf children as language deficit are held responsible for denying an entire community of deaf North Americans access to their native language and the cultural identity inherent within it (Dolby, 1992; Elliott, 1993; Erting, 1987).  Research which has been conducted on deafness in non-Western nations indicates that in societies where deafness is not conjured as necessarily negative, deaf individuals may enjoy valued positions within their communities and have little need to establish communities of their own (Dolby, 1992). As research regarding the social condition of deaf individuals in non-Western nations is extremely limited, any endeavour to understand the social consequences of deafness in non-Western nations must rely on rhetoric which examines the social and cultural interpretations of human impairment as it is known to manifest in non-Western nations. Although it is recognised that all societies will undoubtedly cast some of their members into states of liminality and that these individuals will exist within a stigmatised existence, research which has sought to comprehend human  3  impairment cross-culturally makes it known that human impairments are constructs which are open to a vast array of interpretations (Whyte & Ingstad, 1995). Clearly, what may be interpreted as a socially stigmatised human impairment in one society may be not regarded as socially significant in another.  In order to understand how deaf individuals in non-Western societies define themselves, an examination of kinship is necessary. In Swazi culture kinship is the foundation on which individuals create identities for themselves and, as such, an examination of the social experience of deafness in Swaziland must consider the relationship between deaf individuals and their hearing kin groups. As we will see, kinship in Swaziland encompasses many factors and, as such, a detailed description of Swazi kinship has been included in Appendix A.  In Western nations, schools for deaf students are said to be instrumental in the establishment and persistence of Deaf communities for it is at these schools where Deaf individuals have traditionally come together, shared language and established ties. In Swaziland, the Siteki School for the Deaf has, since its inception in 1976, been bringing deaf individuals from across the nation together.  Although it is frequently accepted that  the physical manifestation of deafness will invariably result in a common social identity, research which has aimed to understand the social and cultural interpretation of human impairment cross-culturally suggests that many possibilities exist for how deafness might be socially understood in Swaziland. The composition which follows extends a first known attempt at offering a long-term, rigorous interpretation of the establishment, interpretation and social consequences of deafness in a non-Western nation.  4  Statement of Purpose  The purpose of this project is to offer a narrative on the social and cultural experiences of deafness in the Kingdom of Swaziland. Although the social experience of deafness in Western societies is well documented, this project is created on the tenet that the story of deafness in North America is but one account of the experience of being deaf. Further, this project recognises that the story of deafness emerges differently from one culture to the next. This project will investigate the experience of being deaf in Swazi society through questions having to do with the establishment of deaf community in Swaziland, the creation of identity and the experience of liminality and personhood. It is intended that this project will expand the social and cultural knowledge of deafness from one which is primarily a Western construct to one which includes a cross-cultural perspective.  Research Questions  Deaf Community in Swaziland. •  Do deaf individuals in Swaziland consider themselves as belonging to a distinct cultural group?  •  What is the role of sign language in Swaziland?  The Creation of Identity. •  How do deaf individuals in Swaziland create identities for themselves?  The Experience of Personhood and Liminality. •  What is the personhood status of deaf individuals in Swazi society?  •  Do deaf individuals in Swaziland experience a liminal existence within Swazi society?  5  C H A P T E R TWO Literature Review  Throughout the Western world, deaf individuals have repeatedly joined together to form what has come to be referred to as Deaf communities. These communities are said to enjoy a culture of their own, making Deaf communities similar to the communities of other ethnic groups. Like other ethnic communities, Deaf communities have established principles and behaviours to which members must conform in order to sustain their status as community members. During the 1760s and 1770s the first educational institutions for deaf individuals were established in Paris, Leipzig and Edinburgh (Groce, 1985). Historians have proposed that these schools, along with the many other educational opportunities which have arisen for the deaf have been, and continue to be, an important factor in the establishment and persistence of Deaf communities (Higgins, 1980; Johnson & Erting, 1989; Padden & Humphries, 1988; Schein, 1989).  It is postulated that Deaf communities may be a phenomenon which is primarily a Western construct (Dolby, 1992). As with the many other citizens of Western communities who suffer from human impairments deaf individuals have had to endure a devalued status 1  within Western societies. In societies where human impairment is not conjured as  According to the World Health Organisation, an impairment is an abnormality or loss of any physiological or anatomical function, a disability is a consequence of an impairment and a handicap is the social disadvantage which results from a disability (Scheer & Groce, 1988). For the purpose of this review, I have chosen to retain the use of impairment when referring to deaf individuals or other groups of disabled individuals, some of whom may be deaf. 1  6  necessarily negative, impaired individuals, including those who are deaf, may not find the need to seek acceptance in a distinct community.  During the 1980s, a concerted effort was put forth by many organisations aimed at easing the plight of disabled individuals world-wide. In 1981, the United Nations declared the International Year of Disabled Persons and, in 1983, the Decade of Disabled Persons, also established by the United Nations, began. These, along with numerous other efforts, aspired to increase awareness and bolster activity in rehabilitation endeavours throughout the world. To be certain, the plight of deaf individuals in non-Western countries was 2  perceived as a priority by numerous aid organisations (Helander, Mendis, Nelson, & Goerdt, 1989). Partly as a result of these efforts, schools for the deaf are now becoming common in many non-Western communities. The fact that some deaf individuals in nonWestern societies have begun to come together raises many questions about the crosscultural aspects of Deaf communities. As deaf individuals in non-Western societies join together for the first time, researchers now have opportunities to discover if the mere acquaintance of deaf individuals is sufficient for the establishment of Deaf communities or if wider social complexities, especially those having to deal with kinship ties and attitudes towards human diversity, alter the establishment of Deaf communities.  In order to examine the issue of deafness in non-Western nations, a thorough examination of several related issues is in order. First, a preview of contemporary thought having to do with theories of cultural and ethnic identity will serve to illuminate how Deaf communities in Western nations have come to be established and maintained. As well, The Canadian International Development Agency (CIDA) has categorised countries throughout the world as being developed, developing and least developed according to factors such as population under age 25, population whose livelihood depends on agriculture, country distribution according to the food supply index, maternal mortality rate, school enrolment rate, access to higher education and external debt. In this review, the term non-Western refers to developing and least developed countries. 2  7  because most present-day knowledge about deafness has been derived from the experiences of deaf individuals in Western nations, an examination of the literature which explores issues related to deafness in Western nations is necessary. Furthermore, literature examining issues related to deafness in developing nations, although scarce and rarely concerned with the social issues of deafness, will add an important perspective to the understanding of deafness in non-Western nations. Finally, an understanding of the related, and slightly better documented topic of disabilities in developing nations will serve to complement knowledge of how impaired individuals, including those who are deaf, are regarded and cared for in non-Western societies.  Cultural and Ethnic Identity Culture Theory  An examination of culture theory demands an anthropological perspective. Indeed, the study of anthropology is analogous to the concepts of culture and ethnicity and to study one without the other would be impossible. However, culture and ethnicity, although widely discussed and studied within the boundaries of anthropology, do not seem to be malleable outside of a conceptual understanding. Occasionally, however, scholars have attempted to analyse these concepts, with varying results. Weber (1968) has defined an ethnic group as "...those human groups that entertain a subjective belief in their common descent because of similarities of physical type or of customs or both, or because of memories of colonization and emigration..." (p.3 89). The International Encyclopaedia of the Social Sciences has defined an ethnic group as "...a distinct category of the population in a larger society whose culture is usually different from its own" (Sihls, 1968, p. 167).  8  For Goodenough (1957), a society's culture "...consists of whatever it is one has to know or believe in order to operate in a manner acceptable to its members" (p.97.).  In his book, Interpretations of Culture, Geertz (1973) has contended that the anthropological search for a "consensus gentium", the all-encompassing definition of culture, is misleading and works against the original intention of anthropological inquiry. For Geertz, culture is a web of significance in which individuals are suspended. Further, the study of culture is an interpretative search for meaning, not for universal laws. Similarly, McFarland (1987) has espoused that cultures are analogous to shapes in that they are amorphous. For McFarland, cultures are seen as shapes which are without defined boundaries.  The view of cultures as being in a continuous state of change has become common in contemporary cultural thinking. With improved communication and technology which connects communities around the globe, cultures are viewed less as separate identities and more as interconnected phenomena. In his recent writings, Homi Bhabha (1994), has referred to homogeneous nation cultures as in "..a profound process of redefinition" (p.5). Indeed, contemporary cultures are in such a state of flux that Carrithers (1992) has offered the simile of trying to study cultures as similar to trying to study snow in an avalanche.  In 1969 Fredrik Barth presented his theory on the persistence and maintenance of ethnic boundaries. The motivation for Barth's work was led by a conviction that traditional attempts to universally define ethnicity denied its inherent phenomenological qualities. Barth's perspective presents ethnic groups as clusters of individuals who similarly define themselves within a boundary. According to Barth, ethnic boundaries are not rigid: rather,  9  they are porous and constantly changing. Further, ethnic group boundaries encase human social life and it is from within these boundaries that cultures are created.  The significance of Barth's work lay in his thoughts on the maintenance of ethnic group boundaries. Indeed, Barth's work presented a first attempt to question how ethnic groups have managed to maintain themselves despite associations with, and influences from, other ethnic groups. Ethnic groups are continually changing, they often exist within similar social systems, members sometimes switch their identity from one ethnic group to another yet, despite the many possible assimilating factors, ethnic identity does not necessarily dissolve. Barth has maintained that it is a flexible boundary, a boundary which accommodates change and allows for a wide range of individual possibilities within a framework of identity, which makes the persistence of ethnic groups possible. From Barth's perspective, ethnic groups are seen as identifying themselves through boundary marking features such as language, religion or skin colour and that these features have different significance and contexts which allow individuals to move between identities  Just as Barth has concerned himself with the boundaries of ethnic groups, Hannerz (1992) has concerned himself with the workings of ethnic groups within their boundaries. Hannerz has argued that cultures are collective phenomena which are produced through social interactions. He has further argued that these social interactions must be both external and internal. External interactions function as a frame of reference through which ethnic group members locate themselves as being either similar to or different from group members and thus either belonging to or not belonging to a group.  Hannerz's view of an ethnic group is that of a mosaic whereby each patch represents a sub-culture, or a segment of the larger culture. When ethnic groups are viewed as a  10  mosaic, a wide range of possibilities for behaviours and expectations present themselves within any ethnic grouping. Further, not all ethnic group members will have access to all of the possible knowledge inherent within each sub-culture, the result being that individual group members will possess different realms of cultural knowledge. From Hannerz's perspective, mosaic patches are what become known as a culture.  Perhaps the only real generalisation which has derived from the study of culture is that culture, no matter what its characteristics or form, is common to all human beings. To quote Geertz (1973), "[c] not just an ornament of human existence essential condition of it" (p.46). Geertz has gone further to say that the very nature of human beings demands the establishment of cultural systems because without culture human beings are unable to organise the symbols of life. From his earlier writings, Geertz (1963) has referred to this essential condition as a "primordial attachment" which binds one to one's kinsmen, neighbours, and fellow believers " the result not merely of personal affection, practical necessity, common interest, or incurred obligation, but by virtue of some unaccountable absolute import attributed to the very tie itself (p.9).  Geertz's work, his conviction that human beings have a natural disposition to produce and participate in cultural systems, offers an important insight into culture theory. Through Geertz the study of culture and ethnicity are legitimised by recognising them as intangible, as unable to be defined consensus gentium but also as real, identifiable constructs which exist within every living human being. According to Geertz, culture exists within every living person and it can, at least to some degree, be observed and recorded. Furthermore, culture is in a continuous state of change and what is observed and recorded at one moment may be different at another moment. Indeed, culture is a changing system of  it  symbols which have meaning to those who experience it and attempts to document it will always have to be satisfied with partial interpretations.  Disability and Culture  Much of the discussion about cultural groups gives the impression of cultural groups as cohesive entities. An underlying assumption in most cultural discourse implies that every individual can identify with, is a member of and is welcomed into a cultural group. Irving Goffman (1963) in his landmark book Stigma: Notes on the Management of a Spoiled Identity was one of the first scholars to recognise the inadequacies of this assumption. Goffman's work has focused on the devalued status of stigmatised individuals in North American society. For Goffman, North Americans who are disabled occupy the same devalued status as ex-convicts, racial minorities and the mentally ill, to name a few. More recently, Murphy et al.(1988) have described disabled individuals in America as in a state of liminality. Murphy, who was himself disabled at the age of fifty-two, has described the social experience of becoming disabled as a rite of passage whereby he was transformed from a fully functioning member of society to an out-casted, liminal member of North American culture. Liminal societal members are neither members nor non-members, they are at the threshold of society, they are, as Murphy (1995) states, "betwixt and between" (p. 153).  Murphy's (1995) concept of liminality has become a cornerstone for contemporary discourse on disability and culture. Much of this discourse has paralleled the rhetoric of personhood within cultures through which present-day scholars have recognised that all cultures define some members as non-persons (Whyte & Ingstad, 1995). Non-persons differ from persons in that they are lacking the prescribed cultural attributes necessary for  12  attaining full personhood within a culture. In North'America, it is the disabled, among others, who have been ascribed this non-person, or liminal, status. According to Murphy (1995) it is the dysfunctional body of the disabled North American that does not meet the stringent standards for beauty, cleanliness, shape and function, which casts the disabled person as a non-person within North American society.  In an attempt to understand personhood cross-culturally, Whyte and Ingstad (1995) have compiled a collection of essays which aim to interpret the social processes of disabilities. From these essays it becomes apparent that personhood is defined differently around the world. Indeed, the notion of disability as a distinct, identifiable group within a society is not necessarily a concept which is recognised cross-culturally. In her study of personhood and disability in Punan Bah, Central Borneo, Nicalaisen (1995) has found that in Punan Bah personhood is defined by kinship, rank, marital status and age. In her observations, disabled persons were well integrated into Punan Bah society and suffered no deterioration in their status as persons. For the Punan Bah, to be unmarried, and especially to be childless, is the criterion which casts individuals into states as non-persons. For the Hubeer in Somali, there is no equivalent word for the Western concept of "disability." In this culture, deaf individuals are simply and matter-of-factly referred to as "without ears" and blind people as "without eyes". In Hubeer society hard work is praised and disabled people are only cast as non-persons if their disability causes them to be idle and inactive (Helander, 1995). Similarly, among the Massai of Kenya, there is no term which could epitomise a grouping of disabled individuals (Talle, 1995). While "disabled" individuals participate in Massai culture by marrying, bearing children, and participating in age-related traditions, it is those who have been conceived outside of the rules for conception who are cast as non-persons and denied entry into Massai society.  13  Clearly, contemporary thought on the cultural status of disabled individuals reveals that all cultures label some of their members as different and casts them into a liminal cultural status. As mentioned, in North America, it is the disabled, among others, who occupy this liminal status. Indeed, some disabled North Americans may be envisioned as a patch, or sub-culture, on Hannerz's cultural mosaic. As a sub-culture, disabled North Americans are included within the boundaries of North American culture yet the roles, opportunities and expectations afforded these individuals are often very different from what are granted to other North American cultural members.  Like all human beings, it may be presumed that disabled individuals have, in Geertz's words, a "primordial attachment," or a natural affinity, to participate and create cultural systems. As such, it is evident that even the most liminal member within a cultural boundary will undoubtedly possess cultural knowledge and demonstrate cultural behaviours. Although studies which have aimed to understand the cultural experiences of disabled individuals, cross-culturally or in North America, are extremely limited and details of these experiences are virtually unknown, the basic tenet remains that all human beings, disabled or not, have a fundamental social tendency to occupy and produce a social existence. Deafness in Western Nations Demographics  Research which has attempted to document the demographics of deafness has indicated a vast discrepancy in reported prevalence rates from country to country. As well, prevalence rates for deafness vary significantly within the regions of countries. In Peru  14  deafness has been reported to occur 300 times per 100,000 population. In Australia, however, prevalence rates are reported at only 35 per 100,000 population. Further, in the United States, recent polls indicate that approximately 1% of the population is deaf with men being more likely to be deaf than women and with prevalence rates, for both men and women, increasing with age (Schein, 1987; Siple, 1978).  One of the more commonly reported demographic tendencies in the Deaf Community is what Schein (1989) has referred to as the "ninety-percent rule". The ninety-percent rule refers to the fact that deaf children have a 9 in 10 chance of being born to hearing parents. Further, deaf children will, 90% of the time, marry another deaf individual. Finally, deaf couples have a 90% chance of bearing hearing children. This demographic fact has a profound impact on the Deaf community and illustrates the isolation experienced by the great majority of deaf individuals. For many individuals, deafness results in extreme isolation from one's immediate kin. For this reason, the Deaf community is often reported as acting as the main social outlet for Deaf individuals. This point is illustrated by Schein (1989), who has referred to the Deaf community as acting in locus parentis for deaf children born to hearing parents. Due to communication barriers, hearing parents are often unable to transmit important cultural information, such as appropriate behaviours and ethnic folklore, to their deaf children, making the Deaf community the primary vessel through which deaf children inherit social and cultural knowledge.  The Deaf Community  To many, except perhaps those who are themselves Deaf, deafness constitutes a disability (Erting, 1987; Johnson & Erting, 1989). To the majority of the hearing population, deafness somehow makes a person less than whole, unable to become a fully functioning  15  member within the mainstream of society (Erting, 1987; Goffman, 1963). Indeed, researchers have frequently concluded that it is the very fact of deafness, and in particular the inability to communicate using an oral language system, which cast the deaf individual as fundamentally, and irreversibly, liminal within North American society (Siple, 1978). However, when researchers have made inquiries into the life experiences of Deaf individuals, they have discovered that Deaf individuals do not always consider themselves disabled (Padden & Humphries, 1988). Rather, deafness, according to those who experience it, is frequently a cultural phenomenon (Johnson & Erting, 1989). Like the sub-cultures referred to previously in this discussion, the North American Deaf sub-culture is said to be framed by a changing boundary within which a distinct culture has been formed and is maintained.  Studies which have attempted to determine how Deaf cornmunities in Western societies govern membership have discovered deafness is not the most important factor for entry into Deaf communities ( Dolby, 1992; Higgins, 1980; Johnson & Erting, 1989). Although the majority of Deaf community members are deaf, most Deaf communities include a few hearing individuals who have embraced community-endorsed attitudes. As well, within the mainstream of society, some deaf individuals are not members of a Deaf community because they do not hold the attitudes or skills necessary for entry (Erting, 1987). The ability to communicate via a common language system, usually sign language, and the ability to use this system well, are important attributes for membership within North American Deaf communities (Higgins, 1980; Johnson & Erting, 1989). Further, membership within Western Deaf communities is often based on the ability of members to identify with the Deaf world and their willingness to participate in community events (Higgins, 1980).  16  Research which has examined Deaf communities has presented two broad observations. First, Deaf communities are often thought to have attributes common to the communities of other stigmatised or oppressed individuals (Higgins, 1980; Johnson & Erting, 1989; Nash & Nash, 1981; Schein, 1989; Stokoe, Casterline & Croneberg, 1976). In his distinguished study into the management of stigma, Goffman (1963) describes the stigmatised person as one who has "an attribute [which] is deeply discrediting" (p. 3). For Goffman, a human response to stigma is to seek out fello-sufferers and form a gathering to which one feels she naturally belongs. For North Americans who are deaf, the discrediting attribute to which Goffman has referred is an inability to comprehend and produce speech, and hence, participate in the hearing world. From Goffman's perspective, the Deaf community is viewed as a gathering of individuals which has been created by deaf individuals and where speech is not a prerequisite for entry.  In his writings Schein (1987) has credited American Sign Language as being the cement which binds North American Deaf Communities. Schein has also reports that, although the great majority of deaf North Americans are well versed in a manual communication system, less than 50% of deaf North Americans report feeling good about their abilities to communicate through speech, speech-reading or written English. As speech and written English are the primary modes of communication employed by deaf individuals outside of the Deaf community, Schein has contended that it is not surprising that deaf individuals in North America find comfort and a sense of belonging within Deaf communities where they are able to communicate with ease.  In 1976, Stokoe et al. published the first dictionary of American Sign Language and, by doing so, helped to recognise American Sign Language as a legitimate language. Today, American Sign Language is an official language and is the fourth most commonly used  17  language in the United States (Siple, 1978). Research on American Sign Language has identified it as being similar to many spoken Languages. For example, American Sign Language is presented in utterances whereby a signer presents a complete thought, then returns her hands back to a centre position and rests briefly before commencing with another utterance. Similarly, just as an English speaker will use intonation to add meaning to spoken English, users of American Sign Language frequently add meaning to their language through body language. Finally, research on American Sign Language has identified phonemes and word order as being important components in American Sign Language.  A second observance of Western Deaf communities describes them as having characteristics similar to the communities of other ethnic groups (Dolby, 1992; Higgins, 1980; Johnson & Erting, 1989). By this interpretation, Deafness is regarded as a state of ethnicity. In their account of ethnicity and the socialisation of deaf children, Johnson and Erting (1989) have described Deaf ethnicity as a social process. According to these authors, when Deaf individuals refer to themselves as being Deaf, they are implying more than an inability to hear. When Deafness is viewed as a manifestation of ethnicity, auditory ability becomes little more than a catalyst for the social processes from which Deaf individuals define their lives.  Hence, the statement, "I am Deaf is not  fundamentally different from other statements of ethnicity such as "I am Jewish" or "I am Spanish".  Education for Deaf Students  Perhaps an examination of the issues which surround schools for deaf children is best understood within a structure of learning theory. In 1991, Lave and Wenger presented  18  their series, Situated Learning, in which they formulated a theory on successful learning. For Lave and Wenger learning is a phenomenon which occurs within much broader circumstances than the school environment and, as such, their theory has made use of the terms masters and apprentices whereby masters are teachers and apprentices are learners. From this perspective, masters and apprentices participate in communities of practice within which learners enter into apprenticeships with masters. Furthermore, Lave and Wenger have visualised learning as a phenomenon which happens on two levels. On one level, knowledge occurs through a teaching curriculum through which masters transmit information via instruction to apprentices. On a second level, the level to which Lave and Wenger credit the occurrence of real and efficient learning, knowledge occurs through a learning curriculum and is knowledge which is acquired as a result of interactions with peers or near peers within a community of practice.  The work of Lave and Wenger is important because it places learning in a relationship within the wide community in which individuals exists. An important component to Lave and Wenger's theory is their conviction that learning is a problematic construct which must be understood within a broad social arena. To illustrate, Lave and Wenger have argued that the formation of identities and the reconstruction of social order, both highly social occurrences, are inseparable from the phenomenon of learning.  The fact that schools for deaf students are often credited as being fundamental in the establishment and persistence of deaf communities bears light on Lave and Wenger's communities of practice theory. Although schools for deaf children are typically constructed with the explicit intent of transmitting a teaching curriculum, it is, as Lave and Wenger have theorised, the learning curriculum or the knowledge which deaf students acquire from each other within the school environment, which has the most fundamental  19  impact on the lives of individuals who attend, or have attended, schools for deaf children. Further, many researchers have argued that Deaf culture, or from Lave and Wenger's perspective, the learning curriculum, is carried to schools for deaf children through Deaf students who have Deaf parents (Erting, 1987). Because Deaf children who have Deaf parents are privy to cultural knowledge from an early age, they are often credited with bringing to school, and passing on, cultural knowledge which, over the generations, has constructed and reconstructed North American Deaf cultural identity.  In her chapter on the politics of education for deaf students, Erting (1987) has described schools for deaf students as in a state of cultural conflict. According to Erting, schools for deaf students encase three different perspectives and two different cultures. Briefly, hearing teachers, who represent the majority of teachers in schools for deaf students, and hearing parents epitomise a hearing culture whereby deaf children are categorised according to degree of deafness and etiologies. Further, from within the hearing cultural perspective, deaf children are viewed as handicapped and in need of instructional methods which will give them the necessary skills, such as learning to read, write and speak English, which will grant them entry into the hearing community. Deaf parents represent the second cultural group contained within schools for deaf students because Deaf parents are more likely to view deaf children from a social perspective. From this perspective, a deaf child's auditory ability is inconsequential but parentage, that is, whether or not the child's parents are Deaf, and the age when the child became deaf are of paramount importance. Viewed socially, deaf children are seen as in need of educational experiences which will offer them many opportunities to access important academic and social information.  20  The cultural conflict discussed by Erting (1987) is frequently seen as manifesting itself in the debate over language in schools for deaf children. Historically, schools for deaf children have denied deaf children access to what members of the Deaf community claim to be the first and native language of Deaf North Americans, American Sign Language (Stevens, 1980; Trybus, 1980). In his discussion on the effects of residential schools on deaf children, Trybus (1980) has asserted that language control in schools for deaf children has been the most crucial element for the oppression of North American Deaf culture. To introduce his argument, Trybus looked at the history of language oppression and stated that "[w]e have seen that a people's language is central and all important, and that control of a people's language by outsiders is a disaster and a tragedy" (p. 105). Trybus's argument is supported by Stevens (1980) who has argued that language and culture are phenomena which cannot be separated and that by denying deaf children access to American Sign Language, they have also been denied the vessel through which they would inherit their cultural identity. Erting (1987) has expanded on the thoughts of Trybus and Stevens by asserting that language is the most important socialisation instrument and that the first language internalised by a child represents "...the world, the only existent and the only conceivable world...", which will inextricably form a person's sense of selfhood (p. 135).  Without doubt, one of the greatest concerns of modern North American education are results which place deaf high school graduates, students with normal intelligence levels, as departing high school having mastered only third or fourth-grade reading abilities (Edmunds, Rodda, Cumming, & Fox, 1992). Many researchers have drawn a direct correlation between poor achievement levels for deaf students and educational policies which have denied deaf children access to their natural language by insisting that they must first, and primarily, learn to read, write and speak English (Dolby, 1992; Elliott, 1993;  21  Johnson et al., 1989; Stevens, 1980). Because the majority of deaf children typically do not have an abundance of Deaf adults, if any, from whom to acquire the language and customs of the Deaf community, they frequently spend many years detached from the culture and language which is said to be rightfully theirs. To illustrate, many reflective accounts from Deaf adults report that, as children, especially those who did not attend residential schools, they felt isolated and different. For many deaf individuals the realisation of a Deaf community, and the mastery of American Sign Language, does not occur until adulthood. The story of a young adult who meets, by chance, an older Deaf individual, who then is taken to a meeting at the Deaf club where, for the first time, she realises that there are others, many others, who are just like she, is common in the life stories of Deaf individuals (Kannapell, 1980).  Time and again, researchers and Deaf community members have insisted that the only reasonable approach to education for deaf children is to realise the multi-cultural qualities of Deaf students (Stevens, 1980). Further, the call for Deaf teachers in classrooms for deaf students is becoming increasingly demanded by the Deaf community (Erting, 1980; O'Connor, 1991; Solomon, 1994). As with other minority groups, Deaf community members feel that the only persons qualified to pass down the culture and language of the Deaf community are fellow community members (O'Connor, 1991; Solomon, 1994). Recently, the bilingual-bicultural approach to educating deaf children has received growing popularity in contemporary educational policy for deaf students. As a teaching strategy the bilingual-bicultural approach endeavours to recognise students who are Deaf as bilingual and thus requiring instruction in both American Sign Language and English and, secondly, bicultural, whereby students who are deaf are recognised as a member of a distinct Deaf community (Johnson et a l , Liddell, & Erting, 1989).  22  Deafness in Non-Western Nations  What is currently known about Deaf communities is largely a result of investigations from within Western cultures. Of the research which has endeavoured to understand the experience of deaf individuals in non-Western cultures, most has attempted to explain and document the various lexicons of deaf languages (Carmel & Monaghan, 1991). Very few studies have recognised the social and cultural aspects of Deafness in non-Western societies. Inquiries which have attempted to study deaf individuals or communities in nonWestern societies suggest that Deaf communities, as presently defined, may be Western phenomena created by the need for deaf individuals to seek acceptance in a community of their own (Dolby, 1992).  In her groundbreaking ethnographic study of deafness on Martha's Vineyard during the late 1800s, Groce (1985) discovered a community which had come to accept deafness as such a natural occurrence that virtually all community members used sign language. According to Groce's account, deaf individuals on Martha's Vineyard during this time were so well integrated into the community that there was no need for the development of distinct hearing and Deaf communities. More recently, in rural Asia, Miles (1984) has found that deafness is often not recognised or considered significant by the hearing population. Similarly, in India, Jepson (1991) has discovered that deafness is frequently not considered fundamentally abnormal by family and community members. From her interviews with several families, Jepson discovered that many deaf individuals in India participate in family functions, contribute to the support of their families, marry and have children. In a traditional Yucatec Maya village in Mexico where the rate of deafness is unusually high, Johnson (1991) has observed that although the deaf individuals in this  23  community recognise themselves as a distinct group^ they do not necessarily seek each other out as sole companions.  Of the extremely limited research which has been conducted on the social and cultural nature of deafness in non-Western nations, a general consensus has surfaced which suggests a lack of, and great need for, additional research (Bruun & Ingstad, 1990; Whyte & Ingstad, 1995). Certainly, the research which is available suggests that deafness, and Deaf communities, may have different social interpretations depending on the larger cultures from which they develop. At the moment, however, documentation is lacking, making it impossible for researchers to state any sort of observations with certainty.  Disability in Non-Western Nations  As knowledge regarding deafness in non-Western societies is extremely limited, it is beneficial to consider what is known about the social and cultural consequences of disabilities in non-Western nations. Although also limited, issues having to do with disabilities in developing nations have received more attention, and are significantly better documented, than the more narrow issue of deafness in non-Western nations. Perhaps by taking into perspective the broader issue of human impairment in non-Western nations, the potential for gaining insight into the lives and experiences of deaf individuals is more likely.  Demographics  Researchers who have studied human impairment cross-culturally have described disabled individuals in developing countries as the poorest of the poor. These individuals are  24  afforded very little, if any, of the privileges regarded as basic human rights in Western societies (Werner, 1983). In many developing countries, the task of providing adequate food, education and health to the majority of the population has proven to be immense, without even considering the special needs of disabled individuals.  This dilemma is compounded when prevalence rates are taken into consideration. Developing countries, which have the fewest resources, are home to the majority of disabled individuals. Poverty, malnutrition, pre-natal and congenital deficiencies, disease and war are major factors which cause high numbers of disabilities in developing countries (Weisinger, 1986; Werner, 1983). In 1981, there were 500 million disabled persons living in the world, 400 million of whom were living in developing countries (United Nations, 1981). Of these 400 million individuals, it is estimated that only 1-2% of them receive any form of rehabilitation services (Helander et a l , 1989).  Social and Cultural Considerations  In 1970, Dr. Edgerton went in search of cross-cultural data on mental retardation by examining the anthropological data bank, Human Relations Area File, and compiled the first cross-cultural study on mental retardation. From his historical efforts he commented that:  No matter the definition nor the discipline doing the defining, mental retardation is everywhere taken to be a social and cultural phenomenon... .1 should think it safe, therefore, to insist that the study of mental retardation calls for a broadly social and cultural view. Such a view would lead to investigation of how men everywhere come to recognize mental retardation,  25  how they speak of it and what they do about people who are so seen and discussed (p. 524).  Dr. Edgerton's work is further established by the World Health Organization (WHO) definitions of impairment, disability and handicap. According to the WHO, an impairment is an abnormality or loss of any physiological or anatomical function, a disability is a consequence of an impairment and a handicap is the social disadvantage which results from a disability (Scheer & Groce, 1988). Thus a person's impairment may be that she is missing a leg and her disability is her incapacity to run but she is only handicapped if social restrictions, such as not being able to go to school or work, inhibit her from being a fully participating member of her society. Unmistakably, the WHO, in agreement with Dr. Edgerton's findings, has attempted to develop definitions which reflect the social and cultural qualities of human diversity.  In 1988, Scheer and Groce endeavoured to examine the cross-cultural and historical perspectives of human impairment. From their studies they found that nurturing and caring for disabled individuals is an age-old convention. These authors report the findings of two human remains from the Neanderthal period, one an older man with severe arthritis, an amputated arm and a head injury and the other a severely arthritic individual. Evidence suggests that both of these individuals survived for several years, despite their impairments.  A commonly espoused premise suggests that, historically, disabled individuals in developing countries have been victims of severe neglect, often causing death at or shortly afterbirth (Edgerton, 1970; Ingstad, 1990b; Scheer & Groce, 1988). Surely, investigators who have made such propositions have taken an excessively narrow scope, overlooking  26  the social and cultural contexts into which all human beings are born. Further, this speculation neglects the fact that the majority of disabilities are identified at some time after birth, or result from illness or accident later in life (Scheer & Groce, 1988). Presumably, the majority of disabled individuals start their lives as conceptually normal, healthy infants who are worthy of the same attachments afforded to all family members. In his account, Edgerton (1970) has pointed out that, from his experiences in East Africa, extremely disabled children were treated in a vastly unpredictable manner. He notes that although some were killed, many others belonged to families who wanted to feed and care for them, despite famine, war and disease which stacked heavy odds against them.  In North America, during the 19th and 20th centuries, many disabled individuals suffered a deterioration in their status as societal members. During this time it became common to segregate disabled individuals from communities and families by providing for them from within institutions. Removing disabled persons from the mainstream of society had the unfortunate effect of causing traditional familiarities and natural support systems to be lost (Scheer & Groce, 1988). Removed from their communities and families, disabled persons were cast into liminal societal positions. Contrary to popular belief, institutionalisation is not a traditional North American approach for dealing with disabled individuals (Stone, 1984). Historical evidence suggests that prior to industrialisation, most persons with disabilities were integrated into communities, protected by ties of kinship and participated in wide social networks (Scheer & Groce, 1988).  Unlike the recent North American practice of institutionalisation, disabled individuals in non-Western communities have not typically been removed from their families and communities (Scheer & Groce, 1988). From their investigations, Scheer & Groce (1988) have proposed that simply because North American culture has cast its disabled members  27  as liminal, one should not assume that disabled persons have been made liminal in other cultures. These authors suggest that in societies where disabled individuals continue to retain their position as societal members, they likely maintain valued social positions within their families and communities.  Etiologies  One way to understand how societies perceive disabilities is to examine etiologies. In North America etiologies usually derive from scientific explanations (Herzlich & Pierret, 1987). As such, it is not uncommon for families to go to great lengths to determine the gene or chromosome which is said to have caused their child's disability. Certainly, in North America, scientific etiologies do much more than simply ease questions of why and how; etiologies are often required for entry into many medical facilities, rehabilitation programs and support groups.  In many societies etiologies are not given as scientific explanations. In her work with disabled individuals in developing nations, Ingstad (1990a) has identified three groups of etiologies which are often believed to cause disabilities. Briefly, disabilities are said to be caused by others, by oneself or by fate. First, disabilities which are said to be caused by others are usually attributed to witchcraft and sorcery, the evil eye, curses and spiritual possessions. Second, breech of a taboo and provoking the ancestors are common explanations describing disabilities caused by oneself. Finally, Ingstad notes that all cultures seem to allow room for the possibility that simple fate has brought on a disability.  28  Rehabilitation Efforts  Much of the concern and action aimed at meeting the needs of disabled individuals in developing countries has been instigated by Western-based organisations. These organisations have attempted to seek culturally and economically sensible solutions to the inequalities faced by disabled individuals in developing countries. Certainly, the success or failure of many of these endeavours is directly related to how well planners have been able to remove themselves from Western constructs and ideologies and replace them with culturally appropriate solutions.  Without doubt, the most prevalent rehabilitation effort put forth by Western organisations is Community-Based Rehabilitation (CBR). C B R was initiated in 1976 by the WHO in response to numerous studies indicating a striking need for rehabilitation services in developing countries. This initial effort consisted of a series of training modules intended to facilitate and mobilise resources for disabled individuals at community levels. The rationale for C B R derived from WHO estimates indicating that institutional-based approaches to rehabilitation, common in many developing countries, were only responding to 2-3% of rehabilitation needs. It was rationalised that, by mobilising resources already available within the community, up to 70% of rehabilitation needs could be met (Helander et a l , 1989). At the time of its inception C B R was seen as a practical alternative to costly, large scale, professionally dependent institutions and outreach programs.  The current model of C B R is a joint effort put forth by the United Nations Development Program (UNDP), the United Nations Children's Fund (UNICEF), the United Nations Educational, Scientific and Cultural Organization (UNESCO) and the WHO. Based on the earlier model of CBR, a revised manual, Training in the Community for People with  29  Disabilities, has been produced which aims to demonstrate basic rehabilitation methods utilising locally available skills and resources.  (Helander et a l , 1989).  Presently C B R has been widely implemented in many developing nations even though very little is known about its actual effectiveness. Time and again researchers have recommended a thorough examination of the C B R scheme but their claims have yet to be heard by funding organisations which hesitate to subsidise evaluation projects which do not meet the immediate needs of disabled individuals living in developing nations. (Miles, 1990; Momm & Konig, 1989).  Although projects such as CBR have frequently been presented as the ultimate cure for alleviating the plight of disabled individuals in non-Western nations, a small amount of research indicates that some non-Western communities have forged distinguishable efforts in an attempt to respond to the needs of disabled community members. Included in these efforts are customs of massage, acupuncture, yoga and sensori-motor stimulation which are practised in various areas throughout the developing world and have been used to rehabilitate persons with disabilities (Miles, 1985). In Mexico, Werner (1987) has had extensive involvement with disabled individuals, their families and communities and from his experiences he has compiled a volume of native Mexican rehabilitation practices entitled Disabled Village Children. In order to gather his data Werner travelled to many Mexican villages and asked families to show him their strategies for dealing with disabled family members. This notable effort derived from a conviction that spreading the news of tried and true Mexican rehabilitation practices would best assist other families to expand their rehabilitation repertoires.  30  Summary  Clearly, an inquiry into the cultural existence of deaf individuals in a non-Western nation has many facets to consider. The very task of interpreting a culture, a construct which has proven to be abstract and always just slightly beyond reach, is certainly a formidable undertaking. However, the writings of social scientists such as Barth (1969), Hannerz (1992), and Geertz (1963; 1973) offer an enlightening framework through which such an inquiry can be managed. By examining the perspectives offered from these frameworks, it is clear that deaf individuals the world over, be they living in Western or non-Western nations, will undoubtedly participate in and produce a cultural system for themselves. Furthermore, in North America it is recognised that many Deaf individuals participate in a cultural group which is distinguished from other cultural groups by its language and inherent ethnic qualities. Alternatively, what is currently known about the cultural circumstances of deaf individuals who live in non-Western nations is significantly less understood. Certainly, from the data which are presently available, it is evident that deaf individuals in non-Western nations might conceivably exist as valued family and community members who have not necessarily needed to seek out a distinct community of their own.  Without doubt, the experience of living with an impairment, be it deafness or otherwise, varies significantly depending on the social circumstances from within which the impairment is defined. From the literature presented heretofore it is clear that any construct which might be labelled as a human impairment is one which must be regarded from a highly social perspective. Indeed, the fact that human impairments can not be translated cross-culturally suggests that human diversity quite likely encompasses a wide range of social definitions.  31  Although it is clear that all societies cast some of their kinsmen into states of liminality and that some of these members are denied entry into personhood within their communities, it is equally evident that the conditions which define constructs such as liminality and personhood vary from society to society. Even though societies, and thus large-scale cultural consciousness, significantly affect how individual communities and kin groups will ultimately define some of their members as liminal or non-persons, it is clear that tolerance toward human impairment, and the consequences for any person labelled as such, is very much an appraisal made on a local level by the individuals who are directly affected by the outcomes of human impairment.  Perhaps the preceding review is best concluded through remarks which endeavour to emphasise the fact that human impairments, deafness included, can in no way be generalised across cultures except through their physical manifestations. Indeed, aside from a common physical outcome, human impairments are social phenomena. Certainly much of what is currently known about human diversity, and its consequences, is derived from a Western perspective. Although much of the social reality of impaired individuals who live in non-Western nations has yet to be understood, a review of the relevant literature brings forth the important point that future endeavours to comprehend human impairments cross-culturally must begin their journey by first abandoning preconceived notions of what constitutes an impairment and allow for a wide range of social definitions.  32  CHAPTER THREE Background Information and Method The initiative for this project came from experiences I had in 1991 when I travelled to Swaziland to live and teach at the Siteki School for the Deaf. At the time of my departure from Canada I had recently graduated from the University of Calgary with a Bachelor of Education and the Siteki School for the Deaf was to become my first teaching experience. Prior to leaving for Swaziland I had long been interested in many of the issues having to do with international development and I had extensive experience working with disabled individuals, including deaf individuals, in Canada. At that time I had no idea that, from these experiences, my two main interests, that of working with disabled persons and that of following the issues of international development, would amalgamate into a single driving force.  Swaziland  The kingdom of Swaziland is a tiny African country nestled between Mozambique and South Africa. Although land-locked, Swaziland boasts a geography which varies from mountains to savannah. The Swazi economy is based primarily on subsistence agriculture, which accounts for about 60% of the Swazi work force. The main exports in Swaziland are sugar and forestry products. Swaziland is heavily dependent on South Africa, from which it receives 92% of its imports and sends 40% of its exports (CIA World Fact Book, 1997). 33  In Swaziland the fertility rate is approximately 6.2 children per women with the infant mortality rate being approximately 101 deaths per 1,000 live births. Life expectancy in Swaziland is 51 years for males and 59 years for females. Approximately 55% of the population in Swaziland over the age of 15 is literate. The official languages in Swaziland are English and siSwati although all Swazi government business is conducted in English (CIA World Fact Book, 1997).  Education in Swaziland  Like many African countries, education in Swaziland is neither free nor compulsory and is based on a British model of education whereby the students are required to pass British examinations. One year of schooling in Swaziland costs the equivalent of about $200.00 Canadian dollars plus uniform and examination fees. With an average family income of about $850.00 Canadian dollars per year, school fees undoubtedly place a heavy burden on many Swazi families. In Swaziland schools are always full to capacity and it is not unusual for a class to have 50 or more students in it. Furthermore, like many other social programs in Swaziland, schools in Swaziland frequently have to function with a limited amount of resources, be they teachers, books or otherwise. Although schools in Swaziland quite definitely endeavour to produce as much benefit as possible from a system which is clearly overwhelmed, the failure rate amongst students is extraordinarily high which, due to the large number of students who repeat grades, places an additional burden on an already overcrowded educational system.  34  Special education in Swaziland is available but limited. In Swaziland, there are two schools for mentally handicapped students, a school for blind students and a school for deaf students. All of these schools have limited space and long waiting lists. Like other schools in Swaziland, students in special education programs are required to pay the usual registration and uniform fees. Because the Siteki School for the Deaf is a residential school, students who attend this school must also pay a small boarding fee. At the Siteki School for the Deaf, students are granted entrance, or placed on the waiting list, based on an examination and confirmation of deafness by a team of teachers who assess potential students when they are first brought to the school by their families.  The Siteki School for the Deaf  Since its inception in 1976 the Siteki School for the Deaf has been a government school which is operated and financed by the Swaziland Ministry of Education. Since it began, however, the Siteki School for the Deaf has been heavily influenced and supported by the efforts of St. Margaret's Convent of Ireland, through which much of its direction and supplementary funding has been received. Perhaps one of the more notable contributions which St. Margaret's Parish has made to the Siteki School for the Deaf is an educational philosophy which emphasises an oral Education approach to the education of deaf 1  students. Despite its stance as an oral institution, any observer would easily discover that  In the history of education for deaf students, several educational schemes have been introduced. Schools which follow the oral tradition operate under the philosophy that the best way to educate deaf students is to teach them to produce speech and to lip read. In Schools which use the oral tradition, sign language is usually discouraged and is often forbidden. 1  35  the Siteki School for the Deaf is a school which is rich in language, not an oral language, but a sign language which has been created by and is used almost exclusively by the students who attend, or have attended, the Siteki School for the Deaf. In the classroom the students may be taught the skills necessary for lip-reading, speaking and writing English, but on the playground their hands and faces are the vessels of their language. Although a few outsiders, such as teachers and other individuals who are not deaf, have a basic knowledge of this language, it is quite definitely a language which belongs to the students from the Siteki School for the Deaf. For the purpose of this investigation, I have referred to this language as Swazi Sign Language.  In 1995, the Siteki School for the Deaf was home to approximately 110 students who ranged in age from 5 years to 20 years. At this time, all of the students were Swazis and many of them travelled from across the country, from rural homesteads, to attend the Siteki School for the Deaf.  Class size at the Siteki School for the Deaf is generally small  with a maximum of 10 students per class and a minimum of 4 students per class. All of the teachers at the Siteki School for the Deaf are local individuals who have postsecondary teaching qualifications. As well, the majority of the teachers at the Siteki School for the Deaf have received additional oral education instruction from a training college in Malawi.  The residential component of the Siteki School for the Deaf consists of four separate dormitories for little girls, little boys, big girls and big boys. Inside each dormitory cots  36  are arranged in rows and each student is assigned a cot. Each student is also assigned a small night stand in which to store personal belongings. Dormitories are supervised by house-mothers whose main concern is the care of the children. A wash house, a laundry area and a dining facility are located in separate buildings. At night the school grounds are safeguarded by a watchman. All of the support staff at the Siteki School for the Deaf, the house-mothers, laundry staff, kitchen staff, night watchman and maintenance workers, are local Swazi workers. In 1996, the Siteki School for the Deaf employed three deaf workers: a housemother, an art teacher and a grounds-man.  The Siteki School for the Deaf, like other schools in Swaziland, operates on a three-term per year schedule. The first term, and the beginning of the school year, runs from late January to early April. Term two commences in early May and ends in early August. Term three runs from early September to early December. During the term breaks, students from the Siteki School for the Deaf return to their families for approximately three weeks, except after the third term, when the school year ends and the students have an extended six-week break. Although it is the parents' responsibility to bring students to the school for the commencement of each school term, the Swaziland Board of Education hires transport to return some of the students to their homes at the end of each term.  Like other Swazi students, the students at the School for the Deaf wear a school uniform which is purchased for them by their families. In addition to a school uniform, families  37  who send children to the Siteki School for the Deaf are required to outfit students with a Sunday uniform, play clothes, laundry soap and personal hygiene products.  In Swaziland athletics are very important and the curriculum at the Siteki School for the Deaf reflects this. Each afternoon the students spend time training and the Siteki School for the Deaf, along with the other schools in the area, participates in all of the regional sporting competitions. In addition to athletics, the curriculum at the Siteki School for the Deaf consists of academic subjects, religion, agriculture, needlework for girls and woodwork for boys. At the time of this investigation the Siteki School for the Deaf functioned only as a primary school, with there being no secondary level education available to deaf individuals in Swaziland.  The school day at the Siteki School for the Deaf runs from 8:00 A M until 3:00 P M . At 10:00 A M the students have a break, at which time they are given a snack, usually bread and tea. Lunch is between 1:00 P M and 2:00 P M and dinner is at 5:00 P M . During breaks and after school the students are mostly free to do as they please, so long as they stay within the boundaries of the school. After school is over for the day it is typical to see students playing a sporting game, such as soccer or net ball, or just sitting outside and socialising.  38  Method  The initiative for this project began in February, 1995, when I wrote to Mrs. Rose Nxumalo, Head Teacher at the Siteki School for the Deaf, and asked for her approval of this project (Appendix A). After receiving approval from the Siteki School for the Deaf (Appendix B), data collection for this project commenced in October, 1995, and continued for a 10-month period ending in July, 1996. During the 10-month period in which the data for this project were collected, I resided with my family at the town of Siteki which is located in Eastern Swaziland and is home to the Siteki School for the Deaf. Although a great deal of the data which were collected for this project were gathered from within the boundaries of the Siteki School for the Deaf, a significant portion of the data presented within this composition result from interactions which took place outside of the Siteki School for the Deaf and within the larger deaf community of Swaziland. Of the data which were collected at the Siteki School for the Deaf, nearly all were gathered outside of school hours while the students socialised freely in their spare time.  For the purpose of this investigation, a person who is deaf is defined as any person who was born deaf or became deaf early in life, before the development of oral language. Although many of the individuals who participated in this project are deaf according to the given definition, data collection for this project encompassed a wide variety of individuals with an array of hearing abilities. As this project endeavours to construct a social image of deafness as it is experienced in the Kingdom of Swaziland, it was felt that the opinion,  39  view or experience of any individual who was somehow connected to the issues of deafness in Swaziland would add rigorous benefit to the results of this project. As the story of deafness in Swaziland is undoubtedly one which has many interpretations, project participants included past and present students from the Siteki School for the Deaf, members from the adult deaf community in Swaziland, family members, teachers and staff from the Siteki School for the Deaf, long-term residents from Good Shepherd Mission and St. Margaret's Convent in Swaziland and local health care professionals. Of the deaf individuals who participated in this project, none of them are known to have any other disabling conditions other than deafness. Because of obligations outlined by the Ethics Review Committee at the University of British Columbia, none of the individuals who participated in this project have been identified by name (Appendix C).  Consent for this project was obtained from all of the individuals who participated in its evolution. Written consent for participation in this project was obtained from all of the participants who were hearing and able to read English (Appendix D). Project participants who were hearing but not able to read English were offered an explanation of the project and then were asked for their verbal consent which was subsequently video taped. As the Siteki School for the Deaf acts in locus parentis for the students, written consent for student participation was obtained from the Siteki School for the Deaf on behalf of the students and their families (Appendix E). Because it was believed that the great majority of deaf individuals in Swaziland, be they attending the School for the Deaf or not, would not be well versed in written English, deaf individuals were not asked to sign written  40  consent forms. In lieu of written consent, the deaf individuals who participated in this project, like some of their hearing counterparts, were offered an explanation of the project and then asked if they would like to participate. Because many of the deaf individuals who participated in this project were so frequently involved when data were being collected for this project, consent from these individuals was an ongoing process whereby they were regularly asked if they would like to continue to participate in the project.  As this project is founded from an intention to offer a narrated interpretation of deafness in Swaziland, the data collected were gathered using ethnographic research methods. In keeping with ethnographic research techniques, a great deal of the data collected for this project derive from time I spent as a participant observer amongst a variety of deaf individuals in Swaziland, both inside and outside the Siteki School for the Deaf. In addition to participant observation, this project also made use of formal and informal interviews and detailed field notes as processes of data collection.  For this project, participant observations are documented spontaneous interactions between myself and the individuals who participated in this project. During the 10 months while the data for this project were being collected, a great deal of my time was spent as a participant observer at the Siteki School for the Deaf, at organised functions for members of the adult deaf community in Swaziland, or at known locations where members of the adult deaf community in Swaziland meet. As I lingered at these locations, I had ample opportunity to become acquainted with many individuals, most of whom were deaf,  41  and converse about the day's events, witness narratives unfold and pass along my own life stories. Even though most of my time spent as a participant observer within the deaf community in Swaziland followed an intentionally informal agenda, occasions did arise when I entered into a scene as a participant observer with the intention of addressing a specific topic or asking a particular question. Although occasions such as this may have had, at least from my perspective, a sense of an agenda, my approach was to wait for an appropriate moment to initiate the interaction, if only briefly, into one which could be characterised as an informal interview.  On occasion data collection for this project took on the format of a formal interview. For the most part formal interviews took place with hearing individuals, usually professionals, who required that I arrange a scheduled time to speak with them.  A significant amount of the data collected in Swaziland for this project were recorded using a video camera. In all, the narratives offered within this composition have been selected from approximately forty-two hours of video data. In addition to video data, approximately twenty-two hours of audio data were also collected during the term of this project. In its entirety, the video and audio data, in addition to comprehensive field notes, form the foundation from which the story of deafness in Swaziland, as it unfolds on the pages of this composition, has evolved.  42  Initially it was intended that the vast majority of the data collected for this project would be recorded on 8mm video. The motivation for choosing video as a medium to collect data derived from a conviction that capturing narratives and images on video would produce a powerful, contextually rich, data file from which a rigorous narrative about deafness in Swaziland would emerge. In keeping with other endeavours in the field of video ethnography, it was postulated that the negative effects brought forth by the presence of a video camera would eventually neutralise as project participants became accustomed to its presence.  Contrary to the experiences reported by other researchers  who have carried out ethnographic research projects using video technology, the presence of a video camera during the course of this project never completely neutralised. This circumstance is especially true for data which were collected at the Siteki School for the Deaf where the mere sight of the video camera would inevitably cause a rush of excitement amongst students who all wanted to be first in front of the lens. Although I was able to use the video camera to capture a significant amount of valuable data, both inside and outside of the Siteki School for the Deaf, it was frequently the case that the presence of the video camera would cause meaningful interactions to lose significance as the focus shifted from a given issue to the presence of the video camera. In situations such as this it was resolved that data collected without the video camera contained more integrity and would be more useful for the intended propose and thus I would decide to change my data collection strategy to the more non-intrusive data collection method of detailed note-taking.  43  During 1991, when I first came to know the Siteki School for the Deaf I acquired a moderate amount of Swazi Sign Language from some of the older students who were then attending the school. When data collection for this project began in October, 1995,1 hired the services of an interpreter to help me translate interactions with the students from the Siteki School for the Deaf and other communities of deaf individuals in Swaziland. Although not deaf herself, this interpreter experienced a hearing loss for part of her childhood years and was thus sent to the Siteki School for the Deaf where she learned both Swazi Sign Language and spoken English. After working with this interpreter for several months, my own skills in Swazi Sign Language improved considerably and I discovered that I had many naturally occurring teachers, most notably a handful of adolescent girls from the Siteki School for the Deaf, who were keen to instruct me on the basics of their language. Although, while in Swaziland, I periodically hired the translation services of an interpreter I was, for the most part, able to participate within the various communities of deaf individuals in Swaziland using my own repertoire of skills. It is my sentiment that, by being able to work without a translator, I was able to create a relationship of trust between myself and many of the individuals who participated in this project and thus engage in meaningful discourse which is now reflected within the composition which follows.  Although I feel certain that the data collected from the individuals who participated in this project flow out from genuine relationships, it is important to mention the honest limitations inherent within the fact that I, as an outsider, initiated this project and  44  undertook to carry out its necessary stages. To be certain, this project would have maximised its potential had a Swazi individual, preferably one who is deaf, found a desire to tell a story about deafness in Swaziland and henceforth carry it out to completion. Clearly, I am not deaf nor am I a Swazi and thus all of my interactions in Swaziland must be viewed with a certain amount of bias which will undoubtedly reflect my outsider, and thus somewhat unknowing, point of view. Perhaps the only amend which can be given to this obvious blemish is to insist that the story which follows be viewed as an interpretation composed through my own biased hand but also through sincere intentions which solely resolve to make known a story which might not otherwise be known.  The method outlined in this chapter is intended to exist as a multi-layered undertaking. At its most basic level this project finds its foundation from the many hours spent in dialogue with a vast array of deaf individuals in Swaziland who offered their thoughts, feelings and life stories as a contribution to this project. In order to expand on its foundation this project has endeavoured to gain a deeper understanding into the social consequences of deafness in Swaziland by including within its boundary discourse offered from hearing individuals who somehow find their lives connected to deafness. By including hearing individuals within the parameters of this project, the social phenomenon of deafness in Swaziland has been approached as a state of existence which does not manifest in isolation but is, rather, affected by and responds to outside influences. On yet another level this project includes the voices of various professionals in Swaziland who offer their perspective on the social experience of deafness in Swaziland. Further, because the  45  physical experience of deafness is never completely divorced from other states of human diversity, this project, at its final layer, includes interpretations offered from individuals who find themselves somehow involved with the issues which affect other disabled individuals who live in the Kingdom of Swaziland. As a result of the multi-layered research method through which this project took its guidance, it is intended that readers who venture forward to explore the interpretation of deafness which follows will find themselves emerged in a contextually rich narrative.  46  PART TWO  THE STORIES  47  C H A P T E R FOUR Preface  The chapters which follow derive from data collected in Swaziland during 1995 and 1996. They are a compilation of narratives offered by deaf individuals, family members, teachers, mission workers and local health care professionals. As well, much of what evolves in the following chapters results from many hours of observing and participating with members of the deaf community, including past and present students of the Siteki School for the Deaf, in Swaziland. It is intended that the pages to follow will present as a narrative and, as such, the discussion henceforth frequently takes on the literal stance of being a story about the experience of being deaf and living in the Kingdom of Swaziland. Like all stories which aim to interpret the lives of others, this story is in fact an interpretation as seen and experienced through the eyes of the note-taker, myself. Although the interpretation presented here evolved from my own hand, the actual story belongs in Swaziland amidst the many individuals who offered their life narratives as a contribution to this project.  Because the composition which follows emerges from a selected population of deaf individuals in Swaziland, most notably past and present students from the Siteki School for the Deaf, it must be understood as a story which is only partially told. Like most underdeveloped countries, Swaziland has far more people than resources and even in the general population only about 75% of children receive a primary education. Although no exact figures exist, it is estimated that the Siteki School for the Deaf, with a population of  48  about one hundred and ten students, services only about fifty percent of the profoundly deaf children in Swaziland. ("The National Sample Study," 1987). With regard to the estimated fifty percent of profoundly deaf children in Swaziland who are not, or have not, attended the Siteki School for the Deaf, it is probable that they are living with their families on rural homesteads and not receiving any educational services at all. Because this project did not have access to individuals who have not attended the Siteki School for the Deaf their voice is missing from this story.  Those who venture forth to read the following story will find participant voices intertwined with the hand of the note-taker. It is intended that the voices of the individuals who participated in this project exist substantially within this story in order to remind readers of where this narrative is founded and to maintain ownership of the story with the individuals who shared their life stories to create it.  Many of the participant voices contained within the following pages derive from original discourse which took place using Swazi Sign Language. Like other forms of sign language, Swazi Sign Language contains elements of word order and word usage which make it effective as a visual language but which frequently fails to convey sufficient meaning when translated verbatim into English word order. Throughout this project, the narratives offered by the deaf individuals who contributed to this narrative have retained their original context and are, as much as possible, accurate representations of their original word order and word usage even though they are translated voices created  49  through the hand of the note-taker.  It is also important to note that, in keeping with  ethics guidelines set forth by the University of British Columbia, all of the narratives offered within this project are presented anonymously in order to protect the confidentiality of project participants.  In addition to the narratives offered within the text of this story, readers will find images scattered throughout the pages to follow. These images, which are, in fact, selected captured frames from over 42 hours of video data, have been selected because of the story they tell. The images witnessed throughout the pages to come are presented as autonomous, non-translated fragments of a tale which, when observed amidst the accompanying composition, offer a story which is rich in layers and depth. Through their reflections, the images captured henceforth portray some of the individuals who participated in this project, they illustrate the landscape and structures from within which this story has been moulded, and they offer a background through which readers of this story will be able to identify an arena into which to place their own interpretations of meaning and truth.  As the composition which follows is about to unfold, I would like to challenge readers to wipe clean any preconceived notions of what it means to be deaf. By entering upon this tale with a slate clear of previous sentiment, readers will open themselves up to the possibility that deafness, although physically similar the world over, might possibly be a state of existence which manifests divergently around the globe. Although some of the  50  rhetoric which follows might settle easily on the clean slate of readers versed with knowledge of the social consequences of deafness, a portion of the information offered from this tale might be difficult to receive if a reader is convinced that all previous knowledge regarding the social consequences of deafness is unquestionably steadfast.  51  C H A P T E R FIVE Communication and Sign Language  Because communication is central to the experience of being either hearing or deaf, an examination of issues having to do with communication and sign language form an important base for understanding the social and cultural experience of being deaf in Swaziland. The exploration of communication and sign language which follows illuminates questions of how deaf individuals in Swaziland create and maintain an identity for themselves and how Swazi constructs of kinship are understood by deaf community members. Further, by examining issues of communication and sign language in Swaziland, it is possible to identify how deaf and hearing individuals regard each other and the role of sign language in Swaziland.  Communication and sign language amongst the deaf individuals who participated in this project must be understood within the context of the Siteki School for the Deaf. Since the Siteki School for the Deaf first opened in 1975, it has operated using an oral education technique. Within the classrooms at the School for the Deaf teachers have been trained, and are using, a curriculum which strives to teach students how to read, write, understand and speak English. Outside of the classroom, however, sign language flourishes at the School for the Deaf. When school is finished for the day, students can be found sitting on verandas, grouped under shade trees or playing on the sports field, their hands and arms quickly moving in a language which has been created by and for  52  themselves. To date this language, which I have referred to as Swazi Sign Language, remains undocumented and the only fluent users of the language are the past and present students themselves. As there is no formal institution which acknowledges or teaches Swazi Sign Language, sign language at the Siteki School for the Deaf is a language which is simply passed down from deaf student to deaf student. Outside the School for the Deaf and amongst the adult deaf community in Swaziland, Swazi Sign Language, a language which originated in the minds of children, continues through a process of change and forms the basis for a sign language which is recognised by the Swaziland National Association for the Deaf as the official language of the deaf in Swaziland.  Perhaps the most notable characteristic of sign language in Swaziland is that it remains a completely undocumented language of the deaf. Its vocabulary, syntax and grammar reflect the communication needs and style of its deaf creators and the subtleties of this language are unknown, and have not been explored, beyond the circles of its users.  1  Since its inception, sign language in Swaziland is very much a language that has developed as the need to communicate develops and, as such, can be viewed as a continuum of learning across the life span of an individual who is deaf.  Although sign language in Swaziland has evolved entirely amid circles of deaf individuals, it has not evolved outside of Swazi Culture. It is evident that sign language  53  in Swaziland encompasses many Swazi cultural characteristics. In particular, deaf individuals in Swaziland, like their hearing counterparts, label their kinship group in keeping with Swazi kinship rules. In Swaziland the term babe (bah-be), or father, is a term which is used to describe one's birth father along with all of his brothers. Similarly, the siSwati term make (mah-ge), or mother, is a term that is used to describe not only one's birth mother but also all of her sisters. Among the deaf individuals who participated in this project the gesture father, like the term babe in siSwati, is a gesture that describes one's father as well as all of his brothers. Likewise, the gesture "mother" in Swazi Sign Language, like the term make in siSwati, is used to refer to one's mother or one of her sisters. Furthermore, the expressions "brother" and "sister", in both Swazi Sign Language and siSwati, are expressions which can be used to describe ones genealogically related kin as well as kin who share the same surname but are not necessarily genealogically related.  In Swaziland one's surname, or sibongo, is an individual's most important form of identification. Individuals who share the same sibongo are thought to be related through common ancestors and, as such, are regarded as members of the same clan. During the course of a greeting, a Swazi person might offer her given name but it is her surname that makes the greeting meaningful. By identifying herself through her surname, a Swazi person imparts important information about her clan and, depending on the situation,  Although there are a few hearing people in Swaziland who have knowledge of sign language (teachers, family members), the only fluent users of the language are the deaf individuals themselves. 1  54  might also privilege herself to certain rights and obligations. Clan members, because they regard each other as brother and sister, are expected to protect and help each other in times of need. Without doubt, the students at the Siteki School for the Deaf, like their hearing kin, understand the cultural importance of clan membership in Swaziland. Although Swazi Sign Language does not afford every sibongo the privilege, and status, of a single representative gesture, sibongos with the highest social standings are provided this liberty. Furthermore, although the students at the Siteki School for the Deaf are not necessarily aware of each others' given names, they are keenly aware of each others'sibongo and there is an astute awareness within the school of clan membership.  2  Even though the Siteki School for the Deaf stands firm as an oral institution, the very fact that it is a residential school where many deaf individuals come together, it represents the centre and the beginning of sign language in Swaziland. Among the individuals  Boys from the Siteki School for the Deaf  who participated in this project, it is clear that the great majority of them encountered their first sign language experience when they first came to the School for the Deaf:  2  In lieu of given names, students at the Siteki School for the Deaf refer to each other by using name signs.  55  The hearing people were looking and talking to me and I didn't know why. I didn't know what the people were saying at home... I was small... I understood nothing when I came to school. I just sat quietly and looked (personal communication, June 8, 1996).  When I came to school I knew nothing. I didn't know any sign language. At home I would go and sit and eat. I was small when I came to school and I watched the bigger ones using sign language. I looked and I understood and I learned sign language (personal communication, June 8, 1996).  In the story of what it is like to be a Swazi child who is deaf and be taken to school for the first time comments such as these above arrive again and again. Repeatedly when I would ask, "tell me about when you first came to school" I would hear stories about being afraid when mother left but then looking around and seeing the sign language and, in time, understanding and learning.  In Swaziland it is not until the age of six, sometimes as late as twelve years of age, that Swazi children typically begin to attend the Siteki School for the Deaf. Prior to this time, Swazi children who are deaf remain at home, usually on homesteads, with their families. Although it is clear that at home, and within their communities, Swazi individuals who  56  are deaf are not using a formal system of sign language, it is also clear that the experience of being at home, and within a hearing community, is not an experience which is completely void of communication. Without doubt, in Swaziland, families and communities have established methods to communicate day-to-day needs to deaf community members.  The following is an excerpt from a conversation I had with a man who repairs shoes just outside of the town of Siteki. He is deaf and lives on his family's homestead with his mother and his two hearing children. When I asked him about communication, he said:  I don't talk to the hearing people. I'm deaf. I show them the poster on the wall and they look at it and understand that I am deaf. It is good, they understand. Everyone who comes here understands. I don't talk. The Shoe repair shop owner  hearing people show me what is wrong with the shoes and I take a piece of paper and write the time... when they should come back (personal communication, November 30, 1995).  57  The experience of using a common object and simple gestures as a way for deaf and hearing community members to communicate was one that was commonly expressed by the individuals who participated in this project. Like the shoe repair man, the following excerpt is from my own journal as I observed a young woman who is deaf selling ice pops at a regional sports competition:  I found A. selling ice pops. Most of the ice pops are being sold to hearing people but A. does not look too worried. She has a little cardboard signs for how much things cost and she just points. Hearing customers don't seem to notice or care (personal communication, March 8, 1996).  Similarly, the following quotation results from an afternoon spent with a young woman who is a past student of the School for the Deaf. Although not currently hearing impaired, there was a time in this woman's life when she suffered from severe ear infections and was unable to hear. Like the shoe repair man and the young woman selling ice pops at the sports competition, this woman reiterates the notion that communication between deaf and hearing community members in Swaziland is an event which is often made successful through the aid of common objects and simple gestures:  Sign language starts from actions because you are trying to say something.. .Like our parents, like myself when I was sick [deaf]. M y  58  mother would usually take my shoes and ask me. "Where is your shoes?'" She would take the shoes and show me using gestures "where is your shoes?" And I was thinking, "Oh, oh, my mother wants mv shoes. I must go Swazi Sign Language interpreter  J  °  and look for my shoes outside and fetch them and bring them back to the house" (personal communication. June 8, 1996).  Perhaps the difference between the sign language which is learned at the Siteki School for the deaf and communication which is established in communities between hearing and deaf community members in Swaziland has to do with the content of what is being communicated. Although Swazi Sign Language has never been subject to any sort of linguistical investigation, it is without doubt a language that has, for example, pronouns, verbs and grammatical rules. Furthermore, Swazi Sign Language, unlike the language systems which are achieved by hearing and deaf community members, is not dependent on the presence of concrete objects or publicly recognised gestures as instruments to express meaning. On the school grounds of the Siteki School for the Deaf, and among deaf adults in Swaziland, it is possible to observe individuals participating in  59  conversations about just about anything; the events of yesterday or last year., religion, family and so on.  It is clear that although deaf individuals in Swaziland are able to function within their families and communities and that they do not exist completely void of language within these communities, it is also clear that their participation is limited to a communication system which is heavily dependent on concrete cues and comparatively simple gestures. While it is possible for a parent to tell her deaf child to go to town and buy potatoes, or to go and do the washing, or that a member of the family has come to visit, it is evident that deaf individuals at home, and within their communities, are frequently not involved in the more informal, social expressions of language. Perhaps this circumstance is best illustrated through the voice of this informant from the Siteki School for the Deaf:  But even then [the parents], they don't understand. Like it's easy when [the students] discuss it with us because we can talk to them but with their parents at home whereby you find a mother talking to girls, a father Teachers from the Siteki School for the Deaf  60  talking to boys, how to take care of themselves. Because the mother cannot communicate really with the deaf child....Unlike saying, "bring that thing" [the deaf child] will see that [the mother] wants that thing and bring it. But when you have to talk of something that is abstract, the parent can not (personal communication, June 25, 1996).  Frequently the individuals who participated in this project would comment about conversations they had with hearing people from their families and communities. Reports of conversations having to do with "my mother told me to go to town" or "my mother said I must not be afraid" or "my mother said I must work hard at school", were common but linked with these comments were many statements having to do with being lonely and not having anyone to talk to while at home:  At home the hearing people are happy. They can talk good. I am sad. I can't hear anything. I am the only one. I can't hear what the hearing people say when they talk to me. There is only one deaf... I am deaf. I never get to play - there is only one, me. I only sit. There are no other deaf (personal communication, June 8, 1996).  She started talking to me about her holiday at home. She said it was a long time. She told me of how her family was talking, talking and how  61  she was spending the whole time just sitting by herself with no one to talk to (Buchner, 1996).  And even the children say they always want to come back to school just because at home they don't talk. See...they're just quiet for a long time school they talk (personal communication, June 26, 1996).  Perhaps communication between hearing adults and deaf children in Swaziland is best understood when one examines the cultural expectation for how younger and older generations interact within Swazi society. Although it is true that at home, on their homesteads, deaf individuals in Swaziland have limited access to social communication, it is important to note that social communication is not a phenomenon that is acceptable or expected between all family Student waiting to be admitted at the Siteki School for the Deaf  members who live tO ethet On a c  ' "  -  homestead. In Swaziland both hearing and deaf children grow up with the knowledge that they must respect any person who is older than themselves. Respect is shown by lowering one's eyes and possibly even one's body position, speaking softly when spoken to and responding promptly to whatever request or errand is asked of them. Even from a young age a Swazi child knows that to badger older persons with questions is  62  unacceptable; rather, knowledge about the world is expected to be passed on through quiet observation. In most Western cultures it is expected that parents will interact regularly with their children and that much of a child's knowledge will be knowledge which is passed verbally from parent to child. In Swaziland, however, children learn from interacting with their age-mates and by observing older persons from a distance. Although deafness in Swaziland quite certainly affects one's ability to socially participate in some relationships, such as with one's age-mates, it does not necessarily significantly alter the structure of many other relationships. Because deafness does not inevitably enter as a factor of consequential change within some hearing and deaf relationships in Swaziland, Swazi individuals who are deaf are frequently afforded opportunities to participate within their families and communities without necessarily being distinguished as significantly different.  The Swazi cultural expectation for how different generations are expected to interact can be easily observed on the play ground at the Siteki School for the Deaf. Furthermore, this cultural expectation has significant consequences for how sign At the Siteki School for the Deaf  students, on their own initiative, divide into age groups and as they get older these age groups also divide by gender. Young deaf children do not attempt to communicate with the older students and rarely do the older ones attempt any kind of formal teaching of sign language or culture to the younger ones. Communication between younger and older students at the Siteki School for the Deaf is, for the most part, limited to situations where an older student might ask a younger student to fetch something or carry out an errand. As a result of this age separation, sign language at the Siteki School for the Deaf is a skill which is learned over many years by interacting with age mates and by observing older students.  Because the passing of sign language at the Siteki School for the Deaf is, for the most part, limited to the knowledge and skills of age-mates, it is a language that operates under a wide range of complexities. Most noticeably, the youngest students at the Siteki School for the Deaf use a form of Swazi Sign Language which is relatively simple but which grows in complexity as they grow older and enter more mature circles of sign language users. On the other end of the spectrum, even the oldest students at the Siteki School for the Deaf do not develop a complete understanding of Swazi Sign Language until they leave the School for the Deaf and become participants in the adult deaf community. At the adult deaf community level, Swazi Sign Language becomes significantly more complex but, like the age groupings so noticeable at the Siteki School for the Deaf, knowledge of this more complex language remains privy only to members of the group and is not passed on to others until they themselves enter into the group.  64  Although an accepted fact that sign language competency is a skill which is acquired over time, there quite definitely remains a feeling among many deaf individuals in Swaziland about having been denied access to language, sign language in particular. An interesting point about this feeling of being denied language is that the great majority of the frustrations are directed toward the Siteki School for the Deaf and its stance as an oral institution. It is clear that the students, both past and present, designate the school as responsible for supplying them with sign language and rarely did the story turn to students expressing frustration at their communities, or families, for somehow being responsible for denying them language. The sentiment of having been denied language is perhaps best conveyed through the voices of the students, both past and present, themselves and through the voice of my own journal entries:  I am sitting... I want to use sign language but the teacher tells me that I must only use speech. I sit... quietly without saying anything. And then when school closes I go Students from the Siteki School for the Deaf saying opening prayers  o  u  t  a n c  *  1  u  s  e  s  i§  n  language. A l l of the deaf are using sign language. It is good. We are happy. We never use 65  speech. When I sit and knit, I think about school closing and using sign language and being happy. When we all get together and meet and use sign language, we leave school behind us and use sign language (personal communication, November 17, 1995).  After teaching me the prayers, A. showed me a prayer at the back of the book which she wanted to learn but she did not know some of the signs... The words were "welcome" and "adore".... I showed her my A S L signs and tried to explain the concepts...but she did not understand. Her look was frustrated and she said, "school.. .only reading, no signs. Why?" Her signs were sharp and dramatic and at that moment I could see this... girl growing into a leader in the Swazi deaf community (personal communication, March 4, 1996).  Today A. taught me how the kids at the school are signing time. A very convoluted method... I asked her where she learned it and she said that she got it from a book and, with somewhat of an angry look on her face, she said, "at school we never learn sign language, only books" (Buchner, 1996).  66  The teachers are speaking. I am deaf and use sign language. I don't understand speech. It is hard. The deaf can learn using sign language. Speech is hard for all the deaf (personal communication, June 8, 1996).  Without doubt, issues of communication and sign language constitute a fundamental segment in the story of what it is like to be deaf and live in the Kingdom of Swaziland. From this project it is evident that the story of communication and sign language amongst deaf individuals in Swaziland contains within it at least two interpretations depending on the geographical orientation of the story. From the Siteki School for the Deaf, this is a story about a private language which has evolved, and no doubt continues to evolve, as deaf individuals come together and satisfy their needs for functional and social expressions of language. From within homesteads and communities in Swaziland, the story of sign language and communication amongst deaf individuals in Swaziland is about deaf and hearing community members who have managed to produce communication systems that meet the expressive and receptive needs of all community members. Although evident that issues of communication and sign language in Swaziland generate two distinct narratives, it is likewise clear that both stories, as regarded from the point of view of deaf individuals themselves, are surrounded by a sense of having been denied something important.  67  C H A P T E R SIX Living in a Family  ... [H]ere in Swaziland everything belongs to everyone - this bottle [pointing to a bottle on the table] is not my bottle but it belongs to my brother, my sister, my father...everyone...(personal communication, May 18, 1996).  In Swaziland family systems play an important role in how individuals created identities for themselves. Clearly, an endeavour to understand how deaf individuals in Swaziland identify themselves, and are identified by others, must align itself with narratives having to do with the social and cultural experience of being deaf in Swaziland and living within a hearing family. The discussion which follows illuminates questions having to do with how deaf and hearing individuals in Swaziland understand the social significance of deafness and how this understanding affects deaf and hearing cultural boundaries in Swaziland.  Being deaf in Swaziland is typically an experience whereby deaf individuals are born to hearing parents and live primarily amongst hearing kin. Although a small number of the  68  individuals who participated in this project reported having a deaf cousin, aunt or Uncle only one participant reported having a deaf parent.  1  Furthermore, although some of the  participants in this project have deaf relatives, the great majority of them reported that their deaf relatives reside at distant homesteads and that they did not grow up in the company of their deaf kin nor do they necessarily have frequent access to their deaf relatives.  A discussion about the experience of being deaf in Swaziland and living within a hearing family can only be appreciated through an understanding of the Swazi family system. Without doubt, the most important social and economic institution in Swaziland is the extended family. In Swaziland people do not function as individuals but rather as members of a family. Socially, Swazi individuals see their blood relatives as not necessarily separate from themselves and are obliged to ensure that their relatives are well cared for and kept safe from harm. Economically, the Swazi family system forms a cohesive group whereby members participate for the common good of the group. At the subsistence level, family members work together to generate common food stores and to manage the family's assets, and, away from the homestead, working family members understand their labour to be one which will benefit all family members.  When participants were asked about their deaf relatives they would often use kinship terms such as "brother", "sister", "mother" and "father" to describe deaf relatives, but when I asked the participants to explain the relationships, the Western terms of "cousin", "aunt" and "uncle" are appropriate. 1  69  The fact that deafness inhibits a person's ability to communicate using their voice and ears, it can perhaps best be distinguished as a state of existence which is most notably marked by its social implication. Furthermore, the social implications of deafness are particularly marked at the family level. The reality that deaf individuals the world over typically grow amid hearing kin groups has led to the frequent conclusion that to be deaf within a Students from the Siteki School for the deaf goins home for  „, .  ,  ,  &  &  C hnstmas break  c  ,  •<  r-  hearing familv is an experience of 0  J  r  social isolation. Upon examining the phenomenon of social isolation amongst the deaf individuals who participated in this project, it is notable that at the Siteki School for the Deaf practically all of the students anticipated and looked forward to going home during the school breaks. Further, feelings of loneliness or isolation did not seem to interfere with the desire to spend time at home. As well, on the occasions when a family member would come and collect a student from the school, or come to visit a student at the school, the event was envied by all of the other students. Although the experience of being at home was frequently retold as a story that certainly contained feelings of social isolation, the actual experience of going home, and being at home, was almost unanimously met with delight. When I asked the students about going home, their responses were matter-of-fact and straightforward and they would say, "... it is good to go home, the food is good there" or, "... It is good to go home and see mother and father  70  and grandmother" or, "I was happy to go home". Perhaps the response which best typified my enquiry into the joy of going home came from an informant at the Siteki School for the Deaf who answered, "[h]ome is home. Ya, there is no place like home. Everyone would like to go home" (personal communication, June 26, 1996). Perhaps this final response best illustrates the cultural understanding that, in Swaziland, home is the place where an individual can truly feel at ease and, no matter what the experience, it is always good to be at home.  It is clear that deaf individuals in Swaziland understand the importance of the Swazi family system and that they see themselves as first and foremost belonging to their hearing families even if they may experience some sort of social separation from them. Like all Swazi youth, the students at the Siteki School for the Deaf do not view their futures as a time when they will go off and make a life for themselves but rather they see themselves as always returning home, to their families where, no matter what the course of their life, they will always find food, shelter and safety.  The experience of being deaf and living in a family in Swaziland is reflected through the voices of project participants who offered narratives having to do with the Swazi tradition for accepting human diversity within communities. Although the narratives on this topic were very scattered in their responses, it is clear is that Swazi communities  71  have varying degrees of tolerance for human diversity. Furthermore, it is also clear that tolerance for human diversity in Swaziland fluctuates depending on the type of diversity being considered. After speaking to a local doctor about how Swazi families deal with the news of the birth of a disabled baby, the following statement was offered:  Disabled man from the Mankayane region  .[T]hey are very good about it, [they] do not show much emotion - even if you tell them that the baby is going to die...they just take [the child] home like any other child (personal Infant who has Cerebral Palsy being helped to crawl by his family  communication, October 18, 1995).  Similarly, when asked for an interpretation of how Swazi communities accept human diversity, and deafness in particular, this long-term resident of Swaziland offered this observation:  72  They accept it...[t]hey accept poverty, they accept hardships, they accept when there is a drought, they accept when the mealies don't grow, they accept things well... (personal communication, November 17, 1995).  In contrast to the narratives that offer a story of acceptance and tolerance for human diversity within Swazi communities, some participants in this project had another view to offer:  ...because in [the past] we were told that when a handicapped child...was born she or he would be killed because it was thought that it was a curse or anything of that sort...But now they don't (personal communication, June 26, 1996).  D. I've been told...that traditionally in Swazi society a child born disabled...might be killed. Do you believe it to be true? A. Yes it is true. The reason is to keep the child from having children who have the same disability. If you kill a child before the parents have spent a lot of food on the child then you are doing two things. It's economical for the parents. Also it keeps the child from passing the disease onto the other generation (personal communication, May 18, 1996).  73  He said that a mother of a disabled child might find herself burdened by the child and wish that the child would just die or... how a disabled child might be dirty or poorly fed...because family members cannot be bothered with the child...[and] the mother [may be] too busy to care for the child on her own (Buchner. 1996).  They have no interest...disability is something you want to get rid of...and traditionally they want to kill the past they would give [a disabled infant] to a witch doctor for six months and after this time if the child is not better then they kill it... (personal communication. May 18, 1996).  What is clear about the narratives offered by the individuals who participated in this project is that there are no inclusive remarks which can be made on the subject of how Swazi families and communities accept, or do not accept, human diversity. Although it is evident that some forms of human Boy who has been disabled by polio with his school mates  diversity in Swaziland have  traditionally been viewed adversely, it is equally apparent that many disabled individuals in Swaziland are well cared for and accepted by their communities and families.  74  When the participants in this project were asked to consider deafness in particular it was generally agreed that deafness, due to its hidden nature, could not be considered amongst the ranks of other states of human diversity which might be regarded unfavourably by some Swazi families and communities:  There has to be a visible disability. Maybe lack of arms. Maybe some features that you don't usually find in a new born baby...(personal communication, May 18, 1996).  [Deafness] is different because it's hidden....So if you are deaf and you are asked a question and you do not respond you are labelled as stubborn or proud (personal communication, May 18, 1996).  .. .especially the deaf do seem to be more accepted by their families because they can still contribute - it is the mentally handicapped and the physically handicapped, who are not able to contribute, who are outcasted (Buchner, 1996).  ...Strange enough with Deafness. Deafness is a hidden...they don't think about it. But with blindness [they] might think... [o]r if the person is mentally disabled they might say "I don't want, they call it crazy, children, brain damaged children"...or if the person is showing a  75  conspicuous illness they might think...twice. But a hidden disability like deafness I don't think they think twice about [it] (personal communication, May 18, 1996).  From the Siteki School for the Deaf there is a portion of data that tells a story about neglect. It story is about parents and siblings who somehow regard deaf family members differently, that they value them less. Narratives about families who bring students to school without adequate supplies or about families who would rather pay school fees for hearing children than for deaf children or about parents who rarely, or never, come to visit students arrive repeatedly in the data collected at the Siteki School for the Deaf. Although the story of neglect certainly contains elements of truthfulness, it is noteworthy that the students rarely told this story themselves and when they did the narrative were usually accompanied with some sort of explanation. To illustrate, one sunny afternoon I found myself in the company of two young girls at the Siteki School for the Deaf. As we sat under the warm winter sun the girls chatted about their families but their discourse was contradictory in many ways. Both of the girls spoke fondly about their families and the discussion eventually turned to the topic of mother coming to visit and of going home. One of the girls was happy and spoke about a recent visit home, but the other girl spoke with sadness over not seeing her family and wishing she could go home:  M y mother never comes to take me home. Over there in town, Siteki, my mother goes there. She is in a shop which sells dresses. The  76  housemothers go to town and they see my mother. I go to town and try to see her but I see nothing and cry. My mother just goes home and does not visit me (personal communication, May 28, 1996).  When I asked the girls about why this mother never comes to visit, the reason is clear and agreed upon by both of the girls:  Expensive!...It's expensive! It's a problem. Uniform, books, school, food, many things. It's a problem. Mother walks to the office and sits down. She gives a lot of money to the office and she gives a small amount of money to me. The money is expensive and mother gives and gives and gives a lot. So, mother and father, they stop coming. It is the same for everybody in the school. The money which mother has is small. It's a problem (personal communication, May 28, 1996).  Similarly, on another day I found myself in the company of two other young women, these women being older and no longer attending the Siteki School for the Deaf. In this conversation one of the women informed me that at her homestead there is a physically disabled boy for whom she helps to care. As part of this narrative she spoke of her experience of growing up, together with this boy, in her family:  77  She says that the boy is in a wheelchair and that he is strapped in around his chest, waist and at his feet...She says that the boy is drooling at the mouth and that his clothes get wet and dirty...[she] says that when she was growing up that her and this boy would always be left at home while the others - the hearing people went to church or town. She referred to both herself and this boy as "poor"...[s]he then made mention of the other children on her homestead as being "rich, not poor" (Buchner, 1996).  The other woman who was participating in this conversation also came from a family where she is not the only disabled person living on her homestead but, in this instance, the other disabled individuals are deaf, just like herself When I asked this woman about her experience of growing up, her response was definite and she said:'s different. The deaf and the hearing are the same.. .mix.. .grow together. Mother buys beautiful clothes for everyone (personal communication, July 10, 1996).  Perhaps the most meaningful portion of this conversation came when I asked these two women to reflect on their own diverse experiences of being deaf and living in a family and to share with me their feelings with regard to the experiences of other deaf individuals in Swaziland. After considerable reflection  78  and discussion between themselves, the two women concluded that in Swaziland, the experience of being deaf and living in a family more frequently. although not always, resembles the experience whereby deaf and hearing family members grow together and are regarded more the same than different. Clearly, the story of what it is like to be deaf in Swaziland and live amongst hearing families and hearing communities is not a single D e a f woman who teaches art at the Siteki School for the Deaf  descriptive narrative, but rather a tapestry of many stories which are as  assorted as the situations from which they derive and as different as the speakers who expressed them. Perhaps the best end which can be gathered from these data is to say that the social consequence of deafness in Swaziland is an experience which passes all points on a spectrum but which, more often than not, is an experience which locates itself at points having to do with acceptance and does not necessarily interfere with how a person is identified within her family and community.  79  CHAPTER SEVEN Deaf in Hearing Spaces  ... [Y]ou cannot find any place in this country which is made up of the deaf clan... So it depends on where education takes you from your family... Because all the deaf communities in this country are for a short time, temporary. Students are there to learn then back to their families they go. Trainees who are learning a job, vocation.. .for three months, back home they go (personal communication, May 18, 1996).  A significant amount of the data which were collected for this project addresses the experience of what it is like to be deaf outside of one's family, or the School for the Deaf, and to move about in the larger hearing community. The experience of being deaf in hearing spaces derives from narratives offered by project participants about what it is like to be deaf in Swaziland and go to town, ride a bus or be employed within hearing public spaces. B y examining the experience of being deaf and living within hearing spaces, the social and cultural experience of deafness in Swaziland is addressed through questions having to do with deaf cultural identity and deaf companionship in Swaziland.  Although the data from this project offer a view of deaf individuals in Swaziland as primarily identifying themselves as members of their hearing kin groups, it is apparent that deaf companionship plays an important role in the lives of the individuals who participated in this project. Away from the Siteki School for the Deaf, while at their  80  homesteads, students frequently reported having access to deaf friends. This experience was particularly true for the older students who had more freedom to be mobile within their communities. What is most notable about the deaf companionship reported by the students from the Siteki School for the Deaf is that the great majority of them live on rural, relatively isolated, homesteads, yet they still manage to seek out deaf friends who live close by. Indeed, it is evident from the narratives offered by students when presented with the question, "How was home?" that, for the great majority of them, a favourite past-time of being at home is to go and visit a deaf friend.  Without doubt, having access to deaf friends while at home eases feelings of loneliness or isolation which may be felt by deaf individuals as they participate in the rituals of their daily lives with their hearing families. As stated, the inability to hear does not necessarily have extensive consequence for some kinship relationships between hearing and deaf family members in Swaziland; however, the presence of companions who are deaf while at home satisfies the human need for social chatter which might not otherwise be fulfilled i f deaf individuals in Swaziland were limited solely to the company of their hearing kin.  Within the adult deaf community in Swaziland, deaf companionship takes on a slightly more cultivated form whereby unofficial, yet well known, meeting places have evolved in towns and villages throughout the country. For many deaf individuals in Swaziland a  81  trip to town begins with a stop at the local meeting place to socialise and perhaps even gather a friend for company while the tasks of the day are completed.  The image here is of a shoe repair shop located at the market in the capital city of Swaziland, Mbabane. What is unique about this shoe repair shop is that is it owned and operated by a team of workers who are deaf. This shoe repair shop is just one of the places in Swaziland where deaf Shoe repair shop in Mbabane that is owned and operated by a team o f deaf workers  individuals regularly gather together.  On any given day it is possible to pass by this shop and find five or six deaf individuals, sometimes more, gathered together, sharing news or chatting about the events of the day.  Shops such as the one shown here, places of business where deaf adults in Swaziland have come to be employed together, are common. Throughout the country several teams of deaf individuals have come together to create business in carpentry, needle work, shoe repair and tailoring. As well, instances where a deaf individual has found employment at a factory, or other established institution, it is common to bring along a deaf friend in the hopes of finding employment for the friend too.  82  In Swaziland, deaf companionship, the way the great majority of deaf individuals in Swaziland have access to other deaf individuals, marks an important characteristic of the Swazi deaf community. Although the deaf individuals who participated in this project do not necessarily consider other deaf individuals to be their first and most important community of relationships, they quite definitely seek out the companionship of deaf friends.  Certainly, companionship among many deaf individuals in Swaziland contains elements of Swazi kinship. Indeed, deaf comrades in Swaziland behave very much like kinsmen in that they look out for and assist each other throughout the course of their daily  12:28:10"||J|  lives. A n important distinction which must be made, however,  M e m b e r s o f the adult deaf community i n Swaziland  between traditional Swazi kinship and any kind of association which might be labelled as deaf kinship in Swaziland is that deaf kinship in Swaziland, unlike traditional Swazi kinship, is not grounded by a sense of obligation but is merely acts of kindness between friends. Further, deaf kinship in Swaziland does not necessarily have any life-long consequences or obligations nor can it be counted on throughout the long-term endeavours of an individual's life. Although it is clear that many deaf individuals in Swaziland experience a sense of dual kinship through both their hearing families and  83  their deaf companions, it is also clear that it is the hearing kinship group that the great majority of deaf individuals in Swaziland count on to be their reliable and long-term source of support and direction throughout the course of their lives.  Deaf companionship in Swaziland is also about the need to feel safe when one is away from the security of one's family. Time and again the individuals who participated in this project offered narratives stating that they preferred to enter hearing spaces in the company of a deaf friend. Furthermore, the company of a deaf companion was frequently expressed as a necessity, and it is clear that i f a deaf person in Swaziland has a choice then it is always preferable to enter hearing spaces in the company of a deaf companion. Finally, to be one deaf person alone within the hearing world is not only frightening but also quite possibly dangerous:  She said that she was afraid, that hearing people talk different and that she doesn't understand. I asked her why she is afraid and then she told me that at home... she sits and watches television - that she does not want to go out alone. I asked her about when she goes to town with the school on Fridays and she said, "No, it's OK. A l l the deaf go together. When many deaf go, it's OK. I want many deaf to go out together" (Buchner, 1996).  A. is moving to live in a small house by himself.. .the girls were shocked  84  by this change of events - they said they would be afraid - afraid of walking home alone - afraid of hearing people who might kill deaf people (Buchner, 1996).  A great deal of the story told by the individuals who participated in this project regarding being afraid to enter hearing spaces without a deaf companion has to do with traditional practices of witchcraft, or, as it is referred to in Swaziland, muti. In Swaziland traditional muti practices have a long history and even today muti remains a common practice which is regarded by many, deaf and hearing individuals alike, to have powerful forces. In Swaziland muti has a wide scope of purposes and, in addition to its common purpose of healing the sick, muti, in the form of a curse, is frequently cited as the cause when ill fate befalls an individual. From the deaf individuals who participated in this project, it is clear that the great majority of them consider themselves to be at risk of encountering mutz and that to be in the company of a deaf companion while traversing a hearing space significantly decreases this risk. Furthermore, from the narratives offered on the topic of muti it is worthwhile noting that muti in Swaziland, from the deaf person's perspective, is an ability which is privy only to hearing individuals:  Today the kids told me that they are afraid to go to the sports competition on Friday because, "the hearing people will blow muti and all the deaf will run slowly.... [Tjhey think that the hearing people at the competition will  85  curse the deaf people and make them run slowly. When I asked them i f deaf people do muti, they said quite definitely, "no!" (Buchner, 1996).  One common phenomenon today seems to be kids passing out on the field while they are running... The standard practice to deal with for a group of "red cross" kids... to rush to the victim... carry him/her off to the red cross tent.. .and administer red cross as necessary. While I was sitting on the field with the kids in the competition a deaf boy fell and I suddenly found myself alone as all of the [deaf] kids rushed to the boy's rescue. When the Red Cross people also came running, the deaf kids waved "go away!" and proceeded to help their friend.... When they came back A . said to me, "the hearing people over there are doing muti - the deaf will never go there - the deaf help the deaf (personal communication, March 8 1996).  It is evident from the narratives offered by the deaf individuals who participated in this project that entering a hearing space with a deaf companion is tantamount to having a second set of eyes which will help look out for any hazards which may be lurking in a place which is unfamiliar and possibly dangerous.  It is clear that many deaf individuals  in Swaziland feel quite certain that they might innocently fall victim to the hearing powers of muti at any time, but with a deaf companion alongside, a deaf individual in  86  Swaziland can walk safely amid hearing spaces hopeful of being rescued, or at least forewarned, of any inconspicuous dangers.  Aside from the issue of safety, much of the data collected for this project indicates that deaf individuals in Swaziland need deaf companions to help them navigate the hearing world. In Swaziland interpreters are few and far between and, except for a few members of the Swaziland National Association for the Deaf, virtually inaccessible to the average deaf person. Throughout this project a story is told over and over again about the experience of being deaf in a hearing space and not being able to understand what is being said, or what is expected. This story is about deaf individuals in Swaziland who depend on other deaf individuals to act as translators, to help guess at what is being said:  ... [A]t the sports competition in Big Bend... A. was with a group of [hearing] girls - the person at the front was explaining what was happening and A. understood nothing except what she could deduct from her sight (Buchner, 1996).  ... [They] were yelling at the deaf kids in siSwati and the kids were looking confused and trying to guess at exactly what they were to do. At one point A. was yelling at two little girls who were giggling... he could not get his message across so he yelled it to B. (who has a little hearing)  87  and she "translated" for him. The little girls immediately stopped giggling (personal communication, March 4, 1996).  At the high jump a man was standing and calling out the names of the kids as their turn came to jump. I realised that the deaf kids have no idea when their name was being called or when it was their turn to jump. The deaf kids were standing hunched together, looking nervous, hoping that together they would figure it out (Buchner, 1996).  [He] says, "Where is the representative from the Deaf Society?" A . continues to look straight forward - obviously doesn't hear him.... [He] says, "come here, sit here." Somehow A. gets the point and begins to come but then [he] says "bring your chair" and makes a motion which A . clearly does not understand and starts to look around confused (personal communication, June 6. 1996).  It is clear that, in the absence of hearing supporters, such as teachers or family members, deaf individuals in Swaziland learn to rely on their deaf comrades to help them navigate meaning in the hearing world. From my own experiences at the Siteki School for the Deaf, I became aware that a select few of the students were regarded by the entire student body as being more adept at communicating with the hearing world and that these students were frequently called upon to "translate" when it became necessary to communicate within the hearing spaces. What is notable about these deaf translators is  88  that they are not necessarily the students who have the most, or the best, hearing abilities but are rather students who possess a wide range of remarkable abilities such as being able to write well, or being able to gesture clearly, or being able to sketch meaningful drawings.  Certainly, the experience of entering a hearing space for many deaf individuals in Swaziland is one that is regarded as an event which must be forged with a certain amount of caution but is not necessarily an Students from the Siteki School for the D e a f at a regional sports competition i n Siteki  experience which is avoided or disliked. Without doubt, deaf  individuals in Swaziland walk freely through the hearing spaces of their communities and, for the most part, manage well. Without fail, deaf individuals in Swaziland can be found either alone or in groups, participating in every arena of the hearing world. What is clear is that for many deaf individuals in Swaziland a companion's company while one travels through hearing spaces is a welcome social diversion to an experience which could possibility involve some risk and is likely to be difficult to understand.  89  C H A P T E R EIGHT Marriage and Children  Clearly, an account of the social and cultural experience of deafness in Swaziland can only be complete by including narratives having to do with marriage and children. Indeed, deaf individuals in Swaziland, like their hearing counterparts, identify themselves primarily through their spousal relationships and the children produced from these relationships. By examining issues of marriage and children amongst the deaf individuals who participated in this project, questions having to do with personhood and liminality are addressed.  In Swaziland the worst possible handicap for any man or woman is to be childless. The production of children marks a person's entry into the adult world, secures a person's future and increases a person's social and economic status. So important are the social and economic consequences of marriage that marriage in Swaziland does not necessarily involve emotional attachment but is often a union of social and economic necessity. Because of the extended nature of Swazi kinship groups, marriage in Swaziland has effects which extend beyond the individuals directly involved and is a life-changing event which benefits all of the members of an extended family. In Swaziland when a man brings a wife to his homestead his entire family benefits through her labour as she helps carry out the work of the day. More importantly, however, are the children which a married woman will produce, children who will become legitimate offspring to the  90  extended family and who will perpetuate the family's lineage. Through the production of legitimate children an extended family, by the fact that it becomes bigger, increases both its social status and its economic power. In Swazi society large families are respected and are considered to have more wealth than small families. Economically, children add value to their extended families by increasing a family's labour pool, and thus a family's ability to produce wealth. Perhaps the most important asset which legitimate children bring to an extended family are not gained until the family has spent many years of effort and resources on the child and the child is old enough to be married. From a boy, an extended family will benefit when he brings home a wife who will continue the cycle of child-bearing for the family. From a girl, an extended family will benefit when she is married and they receive bride price, or lobola, from the family into which she is married.  In Swaziland deaf individuals almost always pass through typical rights of passage and marry and have children. Furthermore, of the deaf individuals who participated in this project who reported having a spouse, the great majority of them reported that their spouses were hearing. In Swaziland it is clear that one's inability to hear is not a just reason to exclude an individual from what is perhaps the most important social  W o m e n from the adult deaf community i n Swaziland  91  event which marks the life of virtually every individual in Swaziland who is granted entry into full personhood. Although deafness may very well be a noted characteristic of an individual as he or she enters into a spousal relationship, a person's ability to produce children, to carry out work in the fields and to provide for the family are attributes which are ranked as the most important when it comes time to choose a spouse in Swaziland.  If the [deaf] man is a shoe repairer then the woman has hope and i f he has accommodation then it is easier for a hearing woman to say, "yes, I would like to stay with you"... .[S]he is desperate for security and she will consent to a deaf man because he is repairing shoes and can bring bread. A l l she has to do is wash clothes, produce children for him.... [A] hearing girl would marry a man who is working, even if he is deaf... For the deaf man, or the hearing man, can the woman produce children? The children will go to his home, carry on the farm work. That is the most important thing, even i f she is deaf. In this culture you are a wife because you can bear children (personal communication, May 18, 1996).  Some of the data having to do with marriage and children which were collected for this project suggests that deaf individuals, although frequently chosen as a spouse by hearing individuals, may not necessarily be the first choice as a spouse by members of the hearing population. Although, through marriage and the production of children, deaf individuals in Swaziland are granted access to an identity which includes personhood, it  92  is apparent that personhood for many deaf individuals in Swaziland may be a state of existence which is experienced at least somewhat at the peripherals of Swazi society. Indeed, part of the story of what it is like to be deaf in Swaziland gives the impression that a deaf individual would be chosen as a spouse by a hearing person but only i f that hearing person were for some reason unable to manage on their own and could benefit by attaching themselves to the deaf person:  [I]n the past they went to V R C in Mbabane.. .it's a training centre for handicapped people and they mix with the other handicapped who are hearing or physically handicapped so they usually get their spouses there most of the time.. .(personal communication, October 25, 1995).  Most of the time when a deaf.. .boy or girl marries in a hearing... .family they say, "Ah, this one will pollute our children... [S]o they wouldn't allow it to happen... [S]o they tend to marry.. .the other handicapped people (personal communication, October 25, 1995).  Narratives, such as the ones above, which tell a story about deaf individuals who participate marginally within some arenas of Swazi society offer a glimpse of the accepted, yet not completely sanctioned, and the hidden, yet not completely unnoticed, social nature of deafness in Swaziland. Clearly, deaf individuals in Swaziland are regarded as having significant social value in that their impaired hearing does not  93  hamper them from being able to partake in extremely important social rites such as providing labour, producing children or learning a trade. The social consequence of deafness is, however, a regarded blemish which has varying degrees of significance on the person of any Swazi who is unable to fully participate in the hearing world.  The fact that deaf individuals in Swaziland typically marry and have children, regardless of the situation in which this happens, demonstrates that a person who is deaf in Swaziland retains enough social value and is thus allowed, or indeed expected, to enter into full personhood, even if peripherally, during the course of their lives. Furthermore, there is no doubt that extended families in Swaziland have a vested interest in seeing to it that a deaf family Brothers who belong to the adult deaf community in Swaziland  member enters into a situation of marriage to ensure that their  communal effort of raising a child, a child who possesses many important social traits aside from deafness, will not be without her rightful benefits.  The story which is told about deaf individuals in Swaziland who are regarded as somehow second-rate marriage partners amongst the hearing population is without doubt a story of partiality. The fact that this story is almost entirely uttered through the  94  narratives of hearing individuals who have some sort of connection to the lives of deaf individuals marks it as a story which must be regarded with cautious partiality. Not once during the collection of data for this project did a deaf individual refer to his or her marriage situation as being somehow undesirable nor was there any mention by any deaf participants that finding a marriage partner is a process made more difficult because of deafness. Indeed, the narratives having to do with marriage and children offered by the deaf participants in this project carry with them a matter-of-fact impression leading one to consider that perhaps the personal traits of a marriage partner for many of deaf individuals in Swaziland are of very little significance, so long as the marriage partner chosen is able to produce children and contribute labour or income to the extended family.  Certainly, the issues of communication and isolation must once again be examined as deaf individuals in Swaziland move into marriage relationships. The very fact that deafness frequently requires that deaf individuals become involved with a second, and usually unknown, extended kin group causes questions to emerge regarding what it is like to  D e a f women attending a Christmas celebration  be deaf and marry into a hearing kin group. Perhaps these issues are of paramount consideration for deaf women who, by Swazi custom, leave their maternal families to  95  reside with their husbands' extended families upon marriage. It seems reasonable to consider the possibility that a deaf individual in Swaziland might re-experience issues of not being able to communicate or feelings of isolation as he or she enters into a family who, quite possibly, has little or no previous knowledge of deafness and does not likely have any established communication methods through which to bring about mutual understanding between deaf and hearing family members.  From the data collected for this project it is clear that many deaf individuals in Swaziland, and in particular deaf woman, do consider the necessity of dwelling within an unknown hearing kin group acquired through marriage as somewhat difficult and possibly even isolating at times. It is, however, also clear that deaf individuals in Swaziland are particularly adept at picking up on simple gestures, gestures made toward common objects and publicly recognised gestures and deriving from them a general understanding of what is expected or implied. Indeed, the ability to decipher hearing world gestures and, in turn, competence at presenting simple gestures which will be understood by hearing onlookers is an essential survival skill for all deaf individuals in Swaziland. Taken from this perspective, marriage into a hearing family for many deaf individuals in Swaziland, and its possible effects due to isolation and communication, is not necessarily an insurmountable obligation but rather one which is similar to many of the experiences inherent within the lives of deaf individuals in Swaziland.  96  As stated earlier, many deaf individuals in Swaziland experience what might be termed as a sense of dual kinship between their hearing families and their deaf companions. Although marriage for many deaf individuals in Swaziland might alter relationships with hearing kin groups, companionship amongst deaf individuals in Swaziland remains constant regardless of an individual's marriage status. Due to marriage a deaf individual in Swaziland may need to adjust to new kinship routines and communication methods but the important, and personally fulfilling, social habit of going to town and meeting with companions, exchanging news and engaging in social chatter will not necessarily be altered by marriage.  In Swaziland it is rare for deaf individuals to be married to each other. Although there are instances whereby deaf couples have come to stay together in a marriage relationship, especially amongst the younger generation of deaf individuals in Swaziland, the occurrence is infrequent and regarded with disfavour by members of the hearing population. The narratives offered on the topic of marriages which involve two deaf partners tell a story of a culture which regards marriage as a union which is intended to exist primarily for functional reasons:  If two deaf marry each other then there is a problem... [the family] usually complains about who is going to talk to them... Or else they won't allow them to stay together because [the family] will think that they will give  97  them some trouble, or something, because they are all deaf (personal communication, October 25, 1995).  [A deaf girl] wouldn't marry [a deaf boy] because of comments from her friends, comments from her family. "Why on earth would you go for a deaf man? Who will hear thieves when they steal chickens at night?" (personal communication, May 18, 1996).  A. told me about how he looked and looked for a deaf wife but he could not find one. He said he was afraid of the girl's father so he took a hearing wife (Buchner, 1996).  O f course, the story about deafness and marriage in Swaziland is only complete when the story of the children who are born from these unions is added to the narratives. Without doubt children are welcome and abundant in the lives of nearly every Swazi citizen, deaf and hearing alike, who is capable of producing them. Although deafness is quite certainly a genetically inherited trait in some families in Swaziland, the great majority of children born to deaf Swazi parents are hearing. Unlike much of the story having to do with deafness in Swaziland, the story of what it is like to be a hearing child and have a deaf parent is a story which is simple and unanimously agreed upon by both deaf and hearing individuals alike. In Swaziland children are raised in and by their communities  98  and a hearing child who is born to a deaf parent simply learns about the world by participating in his or her community:  Usually [the children] can hear and they interact with the other hearing children and learn the language and.. social rules through other children. And in this culture it is that any child belongs to you if you are a grownup. If a child is misbehaving, whether it be your neighbour, you discipline the child. So even if the deaf mother cannot hear how the social game of life is played the other parents can take the responsibility of correcting the child (personal communication. May 18, 1996).  Although considered a valuable asset in the life of any individual in Swaziland, hearing children born to a deaf parent maintain perhaps even more value as they grow and become able to interpret the hearing world for their deaf parents. Without exception, the deaf individuals who participated in this project reported that their children have a knowledge of sign language and observations made during M e m b e r o f the adult deaf community in Swaziland talking  the term of this project make it  to a deaf boy at the Siteki School for the Deaf.  apparent that hearing children born to  99  deaf parents in Swaziland frequently become functional translators for their deaf parents from a young age.  I have two children. They are hearing. Yes they are hearing people. They know sign language, I taught them. I taught them sign language, deaf language. They are clever (personal communication, November 30, 1995).  Clearly, the story of marriage and children amongst the deaf individuals who participated in this project is a tale which is interwoven with elements of acceptance and countered with elements of non-acceptance. It is a story about deaf individuals who seemingly pass through typical adult rites of passage yet, when examined more closely, this passage seems to hinge near the edge of Swazi society. Perhaps the most notable attribute of this story has to do with personal •  •  fulfilment and whether or not deaf individuals themselves feel as if their travel through adult rites of passage are somehow precariously situated within Swazi society. At present, this  D e a f woman with her infant son at an Easter celebration for deaf adults in M a n z i n i  part of the story remains within the minds and hearts of the individuals  who participated in this project and is not currently intended for paper. As a culture, the  100  people of Swaziland own a long-held custom whereby it is expected that individuals will stand strong in the face of adversity and show little outward emotion when hardships arise. In keeping with this cultural expectation, deaf individuals in Swaziland might duly accept their given paths, be it marriage to a hearing spouse or otherwise, as a circumstance which is ultimately acceptable and is considered neither negative nor positive but simply an event which is traversed throughout the course of their lives.  101  C H A P T E R NINE Discussion  In this project I have presented the story of the social experience of being deaf in Swazi society. This account demonstrates that in Swaziland the mere acquaintance of deaf individuals is not sufficient for the establishment and persistence of a Deaf community. Further, the findings from this project contribute to the argument that human impairments are not experienced as a disability or handicap in the same way cross-culturally and that human impairments must be considered in their social and cultural contexts. In Swaziland, deaf individuals do not understand themselves, nor are they understood by others, as belonging to a cultural or ethnic minority, but are regarded as belonging first, and most importantly, to their kin who are hearing. Further, like the experience of being deaf in other parts of the world, the experience of being deaf in Swaziland is very much characterised by language issues. In Swaziland, however, communication difficulties between deaf and hearing individuals are not insurmountable and do not necessarily cause deaf individuals to exist isolated from their hearing kin.  Deaf Community in Swaziland  The data from this project indicate that a sense of deaf camaraderie definitely exists within Swaziland. Although deaf individuals in Swaziland regularly come together and establish ties with other deaf individuals, the boundaries which define these relationships vary  102  significantly from the boundaries which have come to define Deaf communities in Western nations. Clearly, this project tells a story about deaf individuals in Swaziland who certainly enjoy the company of deaf companions, and quite possibly regard deaf comrades as important social outlets, but who ultimately find their most important community of relationships amongst their kin who are hearing. For the purpose of this discussion, the lowercase use of the term deaf community has been retained to describe the gathering together of deaf individuals in Swaziland, but does not imply the social and cultural features which have come to define Deaf communities in Western nations. In Swazi society kinship ties are fundamental biological, psychological, social and cultural bonds which are not transcended by social relationships which develop at schools or associations for deaf individuals in Swaziland.  Unlike Western Deaf communities described by Johnson and Erting (1989), which exist as social constructs no matter where the physical location of their members may be, deaf communities in Swaziland are physical gatherings of deaf individuals who come together for a purpose. In Swaziland, deaf individuals may, throughout the course of their lives, participate in several deaf communities, depending on where they go for education or employment, but their participation within these communities is temporary and will end when deaf individuals return to their hearing families. It is clear from the data collected from this project that deaf individuals in Swaziland regard their deaf comrades as valuable relationships but that in Swaziland, deaf individuals, like their hearing counterparts,  103  understand their genealogically related kin and their clan memberships to be the essential aggregate where they will always be cared for and kept safe.  Like other stories having to do with the social nature of deafness, deafness in Swaziland, and hence deaf companionship in Swaziland, is very much a story about language and communication. Because Swazi Sign Language has never been documented and its subtleties remain privy only to its creators, Swazi Sign language exists primarily within the deaf communities of Swaziland. The data from this project clearly indicate that deaf communities in Swaziland function very much as communication centres, as places where deaf individuals go to participate in unrestrained social discourse. Unlike Goffman's (1963) speculation that disabled people come together and form communities because of their stigmatised societal position, deaf communities in Swaziland do not exist so that members can seek acceptance away from their hearing families and communities but are rather temporary gatherings of individuals who come together largely for communicative purposes.  Although communication and sign language encompass a great deal of the story about deaf camaraderie in Swaziland, communication and sign language often appear as comparatively insignificant factors in relationships between deaf and hearing individuals in Swaziland. Even though the inability to hear, and thus communicate using an oral language system, certainly affects some relationships between deaf and hearing community members, it is clear from the data presented from this project that some other relationships  104  in Swaziland are not heavily dependent on the existence of an oral communication system and are not adversely affected if one party in the relationship is deaf.  The Creation of Identity  In Swaziland deaf individuals identify themselves first through their genealogical and clan memberships and second, when they enter adulthood, through their spousal relationships and the children produced through these relationships. In Swaziland deaf individuals bring their identities with them as they enter deaf communities and participation with their deaf comrades does not significantly alter how Swazi deaf individuals identify themselves. At the Siteki School for the Deaf, the students who participated in this project identified themselves first, and most importantly, through their clan membership and viewed their time spent at the Siteki School for the Deaf as time spent away from their kinsmen. From this project it is clear that, unlike the experience of being deaf in Western nations as reported by Schein (1987; 1989) and Padden and Humphries (1988), deaf individuals in Swaziland do not, once brought together, eventually come to regard their deaf comrades as related kin who share a common identity.  Although deaf communities in Swaziland do not significantly alter how Swazi deaf individuals identify themselves, the narratives offered from this project make it clear that deaf communities in Swaziland are important in the lives of many deaf individuals. Similar to the experience of being deaf in Western nations as described by Kannapell (1980),  105  Erting (1980) and Johnson and Erting (1989), it is through participation within a deaf community that deaf individuals in Swaziland become skilled at sign language and gain the abilities necessary to engage in discourse with their deaf comrades. Further, through involvement with a deaf community, deaf individuals in Swaziland, like their Western deaf counterparts, gain a sense of deaf consciousness whereby they become aware of other deaf individuals in their communities and have opportunities to share their life stories with each other. Even though deaf communities in Swaziland are not established as cultural or ethnic gatherings, nor do they significantly alter how deaf individuals in Swaziland identify themselves, it is clear from the data collected from this project that deaf communities play an important role in the lives of many deaf individuals in Swaziland. Clearly, this project indicates that the difference between the experience of being deaf in Swaziland and the experience of being deaf in Western societies may be a product of the differences in the significance of kinship practices and, as such, the experience of being deaf and going to school or belonging to an association for deaf individuals.  The Experience of Personhood and Liminality  In Swaziland the most important rite of passage in any person's life is the production of children. So important is the creation of children that to be childless in Swaziland is to be cast as a non-person. In Swaziland individuals who are childless live with the stigma of having not passed on their lineage and will have no younger kinsmen to assist them in their old age.  106  The narratives which are presented from this project tell a story about deaf individuals in Swaziland who enjoy full personhood. In Swaziland deaf individuals, like their hearing counterparts, pass on their lineage and contribute wealth and labour to their families by engaging in spousal relationships and producing children. Clearly, the data from this project support Ingstad's (1990) compilation of research which describes human diversity as a highly social phenomenon which is subject to many interpretations. Like the findings reported from Ingstad's work, the data from this project support the position that the construct of personhood among individuals with impairments cannot be assumed to be the same cross-culturally, instead personhood is a construct which reflects cultural values and attitudes.  Unlike the experience of being deaf in Western nations, deaf individuals in Swaziland typically engage in relationships with hearing spouses. In Swaziland deafness does not necessarily cast an individual as an unworthy marriage partner but rather, marriage partners in Swaziland are judged by their ability to produce children and contribute labour and wealth to the family. Clearly, to be deaf in Swaziland is not sufficient reason to exclude a person from the single most important rite of passage through which men and women become acknowledged as persons within Swazi society.  Although there is no doubt that deaf individuals in Swaziland experience personhood in their lives, a portion of the data collected from this project narrates a story about deaf individuals who experience personhood somewhat at the peripherals of Swazi society.  107  The story told from this project presents deaf individuals in Swaziland as important community members who marry and have children and thus are regarded as valued members of their communities but at the same time are regarded as second-choice marriage partners. As well, the story offered from this project narrates a tale about deaf children who are cared for by their families but are valued differently from their hearing siblings. The data from this project indicate that deaf individuals in Swaziland experience what Murphy (1988) has referred to as a liminal state of existence. Although the experience of being deaf in Swaziland does not deny an individual access to personhood within Swazi society, the findings from this project suggest that personhood for many deaf individuals in Swaziland is experienced at the fringes of Swazi society.  New Perspectives  The story told from this project challenges many of the assumptions which currently define the social and cultural experience of deafness and offers a new perspective of the study of what it is like to be deaf. Clearly, in Swaziland, deaf communities are not a statement of cultural or ethnic identity but are simply gatherings of deaf individuals who come together as friends in informal relationships. In Swaziland, deaf communities are not characterised by boundary-marking features but are clusters of individuals who are similar to, and are highly influenced by, the larger Swazi culture in which they live. The data from this project suggest that Deaf communities are phenomena which are highly reactive to the  108  larger culture from which they evolve and are not necessarily expressions of a cultural identity.  This project call for a highly social understanding of human impairments. Further, this project proves that deafness is not an experience which may be defined cross-culturally and that much of what is currently known about the experience of deafness derives from a Western perspective that is not applicable cross-culturally. This project finds that deafness in Swazi society does not necessarily carry significant social consequences and thus demonstrates that deafness does not always cause an individual to be cast as a non-person by a hearing culture. Indeed, from this project it is learned that deaf individuals do, in some parts of the world, participate as valued members within their hearing communities and families. Clearly, kinship is the most important social tie in Swaziland and deaf individuals must be visualised as existing most importantly within their genealogical and clan communities.  The findings from this project question what is currently known about how deaf individuals develop a cultural understanding of their world. From this project it is learned that a deaf individual's cultural knowledge is not always created within or passed on through a Deaf community. In Swaziland cultural consciousness is learned as deaf individuals interact within their hearing communities and families and is an attribute which is carried with them as the enter into and participate within the deaf communities of Swaziland.  109  Future Directions  As this project is a first-known attempt to interpret the social and cultural understanding of deafness in a non-Western nation, it would benefit from additional research which would examine deafness in other non-Western societies and contribute to a cross-cultural understanding of the relationship between hearing loss or impairment and its manifestation as a disability or handicap in non-Western cultures.  It is important to point out that the story of deafness is changing in Swaziland. In Swaziland there is a new generation of deaf individuals emerging who watch television, read Western magazines and are better educated than in the past. In the past few years some of these individuals have organised themselves into an association, the Swaziland National Association for the Deaf (SNAD), which aims to publicise the issues of deafness in Swaziland. In present-day Swaziland, SNAD is urging the government to make policies regarding deafness and the group is pressing to have sign language recognised as the official language of the deaf in Swaziland. The findings from this project offer an interpretation of deafness which was narrated during a time of change in Swaziland. Present-day Swaziland, like many other non-Western nations, is a mix of modernity and traditional customs and it is not known how the story told from this project might change as the Swazi nation struggles to develop and keep pace in a modern world. Clearly, the findings from this project would be enhanced by future research which aims to understand  110  how modern influences affect traditional Swazi culture and if cultural changes affect the experience of deafness in Swaziland.  The findings from this project offer important information to future research which aims to treat the effects of deafness in Swaziland. From this project it is known that deaf individuals in Swaziland currently exist as valued members of their communities and families and future endeavours which acknowledge deafness in Swaziland must consider the social impact of their projects. Certainly, many deaf individuals in Swaziland could benefit, and possibly even regain some of their hearing, if they had access to medical technology and treatments, but projects which might aim to make treatments and technology available in Swaziland must be cautious that their projects manage to treat deafness without negatively distinguishing the experience of deafness and cause deaf individuals to lose social value within their homes and communities. Similarly, future efforts by Western professionals to improve the lives of deaf individuals in Swaziland should consider the data from this project. The lives of deaf individuals in Swaziland will not be enhanced if Western professionals create projects which single out the experience of deafness and cause deaf individuals in Swaziland to identify themselves as being separate from their hearing families.  Even though this project has limited itself to the study of deafness, it offers insights on how individuals with other forms of human impairment might be regarded from a Swazi cultural perspective. This project tells a story of deaf individuals in Swaziland who are  111  socially valuable to their families and communities because being unable to hear does not interfere with their ability to participate in many social obligations and rites of passage. Clearly, it is possible that some individuals with other impairments in Swaziland, especially those who are unable to contribute labour or children to their families, might experience a considerably different social existence from the experience of deafness. 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Battison (Eds). Sign language and the Deaf community. Essays in honour of William C. Stokoe (pp.201-217). United States: National Association of the Deaf. United Nations (1981). World situation of disabled persons. New York: United Nations Weber, M . (1968). Economy and society (Vol. 1). New York: Bedminster Press Weisinger, R. (1986). Disabled persons in the third world present situation and changing perspectives for the future. International Journal of Special Education. 1, 21-34. Werner, D. (1987). Disabled village children. Palo Alto, California: Hesperian Foundation. Werner, D. (1983). Overcoming disability where there is no doctor. In O. Shirley (Ed). A cry for health. Poverty and disability in the third world (p.53-60). Somerset. Third World Group for Disabled People. Whyte, S R . , Ingstad, B. (1995). Disability and culture: An overview. In B. Ingstad & S.R. Whyte (Eds.). Disability and Culture (p.3-32). Los Angeles: University of California Press  117  APPENDIX A Kinship in Swaziland  The following discussion is intended as an outline of traditional kinship practices in Swaziland. Although much of what has been discussed focuses on very traditional Swazi roles, my experiences is that present-day Swazi society is very much a mix of tradition and modernity.  The largest kinship group in Swaziland encompasses the entire nation and is collectively known as emaSwazi. Although no genealogical lines can be traced, Swazi tradition instructs that all Swazis share a common line of ancestry which passes through the King, or Inkosi. Although most Swazi's regard their fellow countrymen as distantly related kin, this putative tie is relatively weak and, without doubt, the strongest bonds of affection and loyalty within Swazi society derive from genealogically related kin who live within the bounds of an umuti, or homestead. Kinship in Swazi society is patrilineal and, as such, within an umuti a man will live with his father, his mother, his father's wives, his own wives, his unmarried children and sometimes his married sons and their children (Marwick, 1966; Radcliffe-Brown & Forde, 1970).  Polygamy is the traditional Swazi marriage custom and is even today regarded as an acceptable aspiration; however, influences from Christian missionaries and taxes imposed by foreign governments have caused the decline of polygamous households in present-day Swazi society (Matsebula, 1972). In the past, polygamy ensured that lines of a lineage  118  carried on through the production of children secured a functional place in society for every woman, regardless of mental or physical attractiveness, and allowed for the provision of Swazi morality which states that a man may not impregnate his wife until she has weaned her youngest child. Swazi marriages are not necessarily unions of love but, rather, unions which are socially, politically and economically necessary and through which legitimate children are produced (Marwick, 1966; Radcliffe-Brown & Forde, 1970).  Even in present-day Swazi society a man's greatest accomplishments and status are measured by his children and his cattle. Throughout his lifetime a man might acquire cattle through inheritance and bride wealth, or lobola, from his daughters or he may exchange his cattle for wives (Matsebula, 1972). Although a Swazi man is ordinarily loath to part with his cattle, bride wealth is not usually considered a hardship as it is through the payment of lobola to a woman's family that children are legitimised (Marwick, 1966). If a woman bears children for a man who has not paid bride wealth for her, the children born remain part of the woman's kin group. It is not uncommon for a Swazi man to pay bride wealth for a woman after she has born him several children, or in some cases, the man may simply lobola the children after which they will be considered legitimately his (Marwick, 1966; Mavuso & Duke, 1981). The only way a man may collect bride wealth from his daughters, or benefit from kin produced by his sons, is to first pay lobola to the family of the woman who produced the children.  It is through the production of children that Swazi men and women gain full personhood in Swazi society. So important is the production of legitimate children in Swaziland that if  119  a man dies before he has produced legitimate children it then becomes the responsibility of the man's younger brother to take over one of his brother's wives and produce children who will become legitimate children of the deceased brother (Kuper, 1963; Marwick, 1966). Further, if a man dies before he is married his younger brother will provide bride wealth for one of his brother's lovers and will raise a family in his brother's name. For women, male children are particularly important as an old woman will only be able to live securely in her grown son's home (Marwick, 1966; Radcliffe-Brown & Forde, 1970). Indeed, through her son, an old woman will experience a brief period of esteemed existence when her son becomes head of the household and she has the privilege of occupying the great hut in the centre of the homestead. From the great hut a woman will work beside her son to manage the affairs of the household and if he dies she will lead the household on her own until an heir for her son is chosen. So intertwined is the mother-son relationship in Swaziland that if a man becomes head of a household and his mother is dead he will often lobola a woman from his mother's kin group so that she may occupy the great hut and act as a mother figure. Similarly, if a woman bears no children, or bears only female children, the woman might ask her husband to have a motherless boy "put into her stomach". In other situations, a woman who has no sons might ask her husband to lobola one of her sisters so that her sister may produce a son for her (Kuper, 1963; Marwick, 1966).  When a man dies his mother, his brothers and his sisters will choose an heir for him. An heir will always be a son to the deceased man, the only condition being that it may not be his first-born son. First-born males in Swazi tradition have the role of providing guidance  120  to younger siblings and, as such, may not inherit wealth which will hinder this role. In most cases, the heir to a man will receive the great majority of his father's wealth with only small portion of the assets being left to other family members. Although inheritance is passed from father to son an heir is chosen because of his mother's status in the family (Kuper, 1963; Marwick, 1966).  Although women in Swazi society may not inherit property, they are allowed to use it. In addition to household items, a Swazi woman will, throughout her lifetime, acquire at least one beast so that she may provide for her children. Even today, Swazi women are not permitted to own land, but if a woman has a son she may make a request for land in her son's name. When a Swazi women dies her possessions will be inherited by her youngest son (Marwick, 1966).  Upon marriage a Swazi woman will leave her kin group and go live at her husband's homestead. A woman's existence at her husband's homestead is marked by rites which distinguish her as a stranger; she retains her surname and is referred to by her surname; she may not go to the place where the ancestors are buried; she may not walk across the yard in a direct way but must walk near the edges of the village; she may not eat the meat of an animal sacrificed to the ancestors; she may not utter sounds which resemble the name of her father-in-law or her husband's older brothers; and she may not sit on her father-inlaw's side of the hut (Marwick, 1966). Through the production of children and years of service to the family a married woman's status as stranger within the kin group fades and the restrictions on her behaviour are loosened (Kuper, 1963: Marwick, 1966). In Swazi  121  society a woman's position in her husband's village is determined by the status of her husband and her sons.  In Swaziland an infant is not a person until his navel string falls and he is taken out of the hut and shown to the moon. The age at which a child is taken out of the hut varies, depending on the status of the family, but it would be rare for any Swazi to lament for a child who dies prior to three months of age (Marwick, 1966). During infancy various rituals are performed to ensure that children grow strong and are not affected by evil spirits (Mavuso & Duke, 1981). When a child is found to be slow in his development, or is blind or deaf, it is often believed that the rituals were performed incorrectly and it is not uncommon that they be done again in hopes of remedying the situation (Marwick, 1966).  While strolling through the shopping complexes in Mbabane or Manzini it may be difficult to imagine a culture of bride wealth or language taboos but the fact remains that, even today, all Swazi individuals find their roots in a traditional Swazi homestead. In the cities, Swazi culture is definitely affected by Western influences but on the homesteads traditional Swazi kinship practices remain very much intact. Despite Western influences, the Swazi homestead remains the strongest social force in present-day Swaziland and the number of individuals in Swaziland who are completely divorced from their traditional roots is extremely low (Matsebula, 1972).  122  APPENDIX B  February 4, 1995 Dear Mrs. Nxumalo, I cannot believe that it is already three years since I first arrived in Swaziland. For me the time seem to have gone by so fast. Since I have left the school I have been in contact with Rhoda and through her I have learned about the many developments at the school. Form her I have learned that the school has grown and that there is even a pre-school program now. I am sure that all of these developments have kept you very busy. I have also been busy since returning to Canada. After returning home I spent some time teaching at a local school in the city of Calgary. I also spent some time working with infants who have disabilities. For this job I mostly worked with families and helped them set up a home stimulation program for their disabled child. Presently I am a full-time student at the University of British Columbia. For my studies I am interested in leering about some of the issues which surround special education in developing nations. The reason I am writing you has to do with my research at the university. I am very interested in special education in developing nations. In fact, my interest in this topic is really a result of my experience at the School for the Deaf. As a requirement for my program I am required to carry out a research project and write a thesis about my project. I am writing to you because I would like to conduct my research a the School for the Deaf in Swaziland and I am seeking you permission. First, let me tell you about what I would like to do. The topic which I am interested in has to do with deaf communities. In Canada, and in many other Western countries, deaf people have joined together to form what have come to be called "deaf communities". It is difficult to explain but people who are deaf in Canada say that they are not disabled - they say they speak another language (sign language) so they are just different from hearing people. So, deaf people here have formed communities - not communities in that they actually live together, but communities in that they are all friends and do things together. They also work together to defend their rights as a distinct language group in Canada. I am interested to know if the students at the School for the Deaf also have these feelings of belonging to a separate community. Deaf people over here say that deaf communities have formed because of schools for the deaf - because it is at these schools where deaf individuals first come together and have opportunities to meet many other deaf people. I guess I am interested to know how culture effects the development of these communities. In order to do this research I would like to do some observations at the school. I would also like to interview a few students (I will need some help with this), teachers and maybe a few people from the town of Siteki. As well, I would like to look at the school archives - that is, information such as enrolment and otherfigureswhich may be available from the Swaziland Ministry of Education. For both the observations and the interviews I would like to use a video recorder so that I may be able to review what I have collected when I return to Canada. At the moment I am thinking that it would take about two months, maybe a bit more, to complete this research. If all goes well, then I would like to arrange to start this research in August or September of this year - or whenever is a convenient time for you.  123  


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