Disability in Japan

Carolyn S. Stevens

• Verlag: Routledge
• Jahr: 2013
• ISBN:
  9781136691713
• Auflage: 1
• Thema: Ciencias sociales
• Thema: Estudios étnicos

Disability and chronic illness represents a special kind of cultural diversity, the "other" to "normal" able-bodiedness. Most studies of disability consider disability in North American or European contexts; and studies of diversity in Japan consider ethnic and cultural diversity, but not the differences arising from disability. This book therefore breaks new ground, both for scholars of disability studies and for Japanese studies scholars. It charts the history and nature of disability in Japan, discusses policy and law relating to disability, examines caregiving and accessibility, and explores how disability is viewed in Japan. Throughout the book highlights the tension between individual responsibility and state intervention, the issues concerning how care for disability is paid for, and the special problem of how Japan is providing care for its large and increasing population of elderly people.

1 Introduction

Thinking about anthropology, disability and Japan

Anyone who knows me knows I have a daughter with a disability. This is not the same as having a disability myself, but I, like all parents who are also caregivers, ‘live with a disability relationally through their children’ (Panitch 2008: 17). Living disability ‘relationally’ means that my close relationship with a child with a disability gives me first-hand experience of both the challenges and achievements that come with living with a disability. It is because of this relational experience that I decided to write this book as an exploration of an/other social world in Japan, that of disability. This social world is often not visible – or audible, or tactile – to people who have no or little contact with disability in their daily lives. While there are very few who have no contact at all with people with a disability,¹ for those who do, often the contact is limited in time and in scope (e.g. the interaction with an elderly relative at the end of life, or a short visit to a special school).

While incorporating a mix of research methods, this project relies mainly on anthropological intellectual frameworks in its approach. This choice is deliberate, as anthropology aims in the first instance to understand, without prejudice, the meaning of human difference. Kasnitz and Shuttleworth, both anthropologists of disability, write that ‘[a]nthropologists seek the other to find themselves’ (2001:20). While some anthropologists look at geographically ‘foreign’ cultures to learn about ‘universals’ of human nature, the anthropology of disability looks at embodied difference as another important indicator of what it means to be human. Disability and chronic illness represent a state that is considered ‘othered’ relative to our expectations of what the ‘able-bodied’ are (in other words, healthy and productive members of society). As an anthropologist with a specialization in Japanese studies, early in my career I researched marginalized communities in urban Japan, including the elderly and the physically and intellectually impaired (Stevens 1997); I specifically chose to study the Japanese underclass because I saw that their social existence threw into relief challenges to values to which the mainstream social classes aspire. By working with the unemployed and the homeless, the elderly and people with intellectual disabilities, all of whom were grouped together both geographically and symbolically by the virtue of their marginal position in society, I learned new ways to conceptualize the meanings of terms such as ‘home’, ‘family’ and ‘work’ in contemporary urban Japan. And, as Kasnitz and Shuttleworth (2001) emphasize, learning about these concepts in contemporary urban Japan was instructive to my interpretation of similar, yet different, phenomena of homelessness, poverty and social isolation in places I called my own (New York City, where I attended graduate school, or Melbourne, where I have lived since 1994). My work in Japan was purely etic, where the anthropologist is an outsider to the culture being studied. Not only was I not Japanese, I was also not a homeless person and I was not a day labourer; in the activist as well as the academic discourse, I was not a tōjisha, or ‘a person [directly] concerned’ (McLelland 2009: 196). While this might have been seen as politically problematic, or at least an obstacle, I found that outsider status allowed me some objectivity in my analysis of the phenomena and, I hope, some flexibility of thought as I did not carry much of the cultural baggage that accompanies social marginalization in Japan.²

Similarly, any research I might conduct in disability studies, in Japan or elsewhere, would be considered ‘etic’. Yet, after the birth of my daughter, who holds Japanese citizenship and has a severe intellectual disability, any further study of social marginality via disability in Japan was no longer about an exotic ‘other’, but firmly about ‘us’. She was diagnosed at birth with a rare chromosomal disorder, classified as an unbalanced translocation by our geneticist. Her condition is rare enough that she has no named syndrome, only an individual karyotype. She shares that structural disorder with only one known living person: her father’s cousin, who, at the time of writing, is living in a residential institution in Japan. Through my child’s diagnosis, we learned of a secret family history, which spoke volumes not only of general social attitudes about disability but also of the quality of distinct personal relations within the Japanese extended family. Because of this close personal connection to myself and to disability in Japan, I was compelled to learn more, and discover just why the translocation had remained a secret for more than thirty years. But it would be an overstatement to say that my approach to the study of disability in Japan has shifted from etic to emic merely as a result of the existence of a family member with a disability. I am still not Japanese, and not a person with a diagnosed disability. I know, however, that sinking feeling when my daughter is being excluded from an activity, or when a specialist programme is structured in a way that sets her up for failure because of her particular disability. Furthermore, because she is non-verbal, this means she shares the problem facing many others with profound intellectual disabilities who find it difficult or impossible to express themselves as ‘tōjisha’ (McLelland 2009: 189). I have tried to the best of my abilities in this research to act as my daughter’s voice whenever and wherever I can.

Using my experience of relational disability as part of the research could be considered a kind of autoethnography; as defined by Duncan, it is different from ethnography because

the researcher is not trying to become an insider in the research setting. He or she, in fact, is the insider. The context is his or her own. Through autoethnography those marginalized individuals who might typically have been the exotic subject of more traditional ethnographies have the chance to tell their own stories.

(2004: 3)

It overlaps with, but can be distinguished from, reflexivity, which describes a consciousness of the researcher’s ‘presence, standpoint, or characteristics [which] might have influenced the outcome of the research process’ (Wall 2006: 3). Duncan observes that autoethnography should always be ‘triangulate[d]’ with other scholarly sources for legitimising interpretations (2004: 5). Muncey writes that the method is one of the few where ‘the author can say “I” with authority and can respond immediately to any questions that arise from the story’ (2005: 10). Wall suggests that feminists who use autoethnography counter male bias in the existing male-dominated literature (2006: 2–3). Nevertheless, autoethnography has its critics: Coffey warns of the potential for autoethnography to result in ‘self-indulgent writings published under the guise of social research’ (1999: 155); Sparkes writes of an array of negative labels for the method, ranging from ‘narcissistic’ (2002: 212) to ‘self-conscious navel-gazing’ (215). These tendencies to view autoethnography as an illegitimate form of scholarship are in turn criticized as arising from our modernist privileging of the scientific ‘objective’ model as a way to understand all aspects of the world around us (Wall 2006: 2).

Still, I wanted to include some autoethnography because of the insights I think it affords. As Duncan writes,

[i]n traditional ethnographic research, gaining permission to become a participant observer in the lifeworld of those being studied is often a challenge. However, for autoethnographers already fully immersed in the focus situation, issues of accessibility, permissibility, and unobtrusiveness do not present such obstacles.

(Duncan 2004: 5)

My research for this book comprises primary and secondary sources ‘triangulated’ with autoethnographic vignettes. Through speaking to people in Japan, reading the material in Japanese and English, and spending time in Japan as a mother of a child with a disability, I have relied both on other people’s accounts of disability in Japan and also on my own direct experience, resulting in a mixed approach with the benefit of insight as well as objectivity.

Disability definitions

Disability, as understood in a variety of contexts, can be defined in numerous ways: there is medical discourse, special educational discourse and even activist discourse. In this section, I will outline some of the more interesting definitions, first in the English language literature, and then in Japanese. In general, the authors who focus on social and cultural dimensions are of most interest. Of course, concrete definitions can be useful: for example, Rosemarie Garland Thomson defines disability as the ‘theoretical opposite’ of ‘the concept of able-bodiedness’, although we must include in that definition the concept of ‘able-mindedness’ as well (1997: 49). The United Nations’ definition of disability breaks it down into three parts, separating disability, impairment and handicap:

(a)	Impairment is ‘any loss or abnormality of psychological, physiological, or anatomical structure or function’. Impairments are disturbances at the level of the organ which include defects in or loss of a limb, organ or other body structure, as well as defects in or loss of a mental function. Examples of impairments include blindness, deafness, loss of sight in an eye, paralysis of a limb, amputation of a limb, mental retardation, partial sight, loss of speech, mutism.
(b)	Disability is a ‘restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being’. It describes a functional limitation or activity restriction caused by an impairment. Disabilities are descriptions of disturbances in function at the level of the person. Examples of disabilities include difficulty seeing, speaking or hearing; difficulty moving or climbing stairs; difficulty grasping, reaching, bathing, eating, toileting.
(c)	A handicap is a ‘disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex and social and cultural factors) for that individual’. The term is also a classification of ‘circumstances in which disabled people are likely to find themselves’. Handicap describes the social and economic roles of impaired or disabled persons that place them at a disadvantage compared to other persons. These disadvantages are brought about through the interaction of the person with specific environments and cultures. Examples of handicaps include being bedridden or confined to home; being unable to use public transport; being socially isolated.

(United Nations 2003–04)

In short, the UN’s definition of disability is any physical, medical and/or intellectual impairment that impedes an individual’s ability to take responsibility for his or her daily functions. The handicap that it results in is a restricted ability to participate in public life through social, political and economic interactions wider than the individual’s immediate family members and carers. This restriction often results in social isolation and low levels of financial and educational achievement. Michael Oliver, a British sociologist and disability activist (and a person with a disability himself), takes the distinction between disability and impairment further and states that ‘my definition of disabled people contains three elements; (i) the presence of an impairment; (ii) the experience of externally imposed restrictions; and (iii) self-identification as a disabled person’ (Oliver 1996: 5). As for the relationship between disability, impairment and the body, Oliver writes that ‘disablement has nothing to do with the body … [but we do] not deny that impairment is closely related to the physical body. Impairment is, in fact, a physical description of the body’ (1996: 35). Tom Shakespeare, another noted UK disability studies scholar, reminds us that the distinction between impairment (which is biological) and disability (which is social) is similar to the feminist distinction between sex and gender (2006: 29–30), suggesting that disability studies could emerge as a forceful intellectual movement similar to feminist and gender studies.

If ‘impairment’ is the physical (or, say, ‘objective’) attribute that sets the disability/disablement process in motion, a focus on social interaction helps us understand disability subjectively, in wider usage and across different cultures. Kasnitz and Shuttleworth describe disability as ‘a socially and culturally constructed category [that] has important implications about how societies differentially distribute power’; they go on to say that

[d]isability exists when people experience discrimination on the basis of perceived functional limitations. A disability may or may not be a handicap, or handicapping, dependent on management of societal discrimination and internalized oppression, particularly infantilization and paternalism, and on cultural and situational views of cause and cure and of fate and fault.

(Kasnitz and Shuttleworth 2001: 20)

Disability disrupts social relations for a number of reasons, the first of which is segregation, resulting from stigma (see Goffman 1997). Thomson notes the term ‘stigma’ is handy, because it can be conjugated to express a variety of processes that surround social stigma: ‘stigmatizer’, ‘stigmatizing’ and ‘stigmatized’ all allow for a proper understanding of the relationship between subject and object; ‘stigmatization is an interactive process in which particular human traits are deemed not only as different, but deviant’ (Thomson 1997: 30–1). Furthermore, she points out that most members of society have some degree of stigmatized attribute, and the subset of ‘perfect’, unstigmatized, individuals consists of a very small number of people indeed (32). Another example of a source of stigmatization, as cited by Thomson, is the idea that people with disabilities are ‘threatening’, because they ‘signif[y] what the rest of Americans fear they will become’ (41) or, as Davis writes, ‘[a]lthough identity politics is popular these days, what people fear is that disability is the identity that one may become part of but didn’t want’ (2002: 4). The neoliberal ideal of personal independence, self-reliance and eventual material and psychological success is shattered by the notion of dependence. In his book The Body Silent (1987), anthropologist Robert Murphy revealed that one of the most upsetting results of his acquired disability was the uncomfortable reaction his disability prompted in others, which stemmed from the unpleasant foreshadowing his presence cast on able-bodied others, fearful of a similar fate. Disability causes ‘social discomfort’ in people without disabilities because during interactions they tend to focus disproportionally on the existence of the disability rather than on ‘the presence of someone with a disability’ (Jaeger and Bowman 2005:21). Other social reactions include ‘pity’ and ‘inspiration’ (both of which can be condescending) and dismissing the existence of a disability (22–3). Because of this stigma and segregation associated with disability, scholars believe that disability status must be seen as equivalent to other critical attributes such as race (see Campbell 2008) and gender, with particular affinity with feminist studies (Thomson 1997: 19–30).³ It is this dissatisfaction with attitudes that place people with disabilities in negative and/or inferior positions in relation to the rest of society that forms the foundation of critical disability studies.

Why are definitions so important? Whether in Japanese or in English, terminology and communication have a complex relationship to our understanding of reality, both arising from the context and moulding its perception. A case study from Japanese special education shows how powerful terminology can be. In Abe’s synopsis of postwar special education reform, he notes that changes in the special education system to address more recently identified learning disabilities (such as dyslexia and ADHD) have been hampered by people who are unwilling to embrace the term ‘LD’ (pronounced ‘eru dii’ in Japanese, an acronym borrowed from the English phrase ‘learning disability’) because Japanese knew what the ‘D’ stood for, and were put off by the equivalent term ‘shōgai’ (disability) (1998: 94). The words used to describe disabilities in Japan carry heavy meanings – so burdensome is their use that they can impede progressive attempts to support children with learning disabilities. Abe concludes this is because parents of these children who had trouble in school were reluctant to align their own children with other shōjigaiji. Acknowledging the importance of this example to our understanding of disability in Japan, a detailed discussion of the cultural and linguistic meanings behind the word shōgai and other disability-related terms is included in Chapter 3.

Disability studies in English

Much of the conceptual framework underpinning the definitions given above arises from a body of interdisciplinary scholarship known as disability studies. Marks observes that ‘[i]t is a central concern of disability studies to demystify the conventions operating in the organization of knowledge about “impairment” and “disability” ’ (1999: 151). Yet, within this scholarship, the most developed of which is primarily in English, there are some competing views. Most commonly considered as the first paradigm to be widely used to understand the phenomenon of disability (and ability) is the medical model – sometimes also called the ‘individual’ model (Priestly 1998; Swain and French 2000: 570; Shakespeare 2006: 15) – which focuses on specific, medicalized conditions that create impairments, which in turn require treatment or, even more desirably, a ‘cure’.⁴ Quinn writes that the medical model arose from the ‘illness model’ in the 1950s, which posited a special status for sick individuals, who were ‘excused from certain expectations based on [their] illness’ (1998: xix). The medical model is also called the individual model because ‘it locates the “problem” of disability within the individual’ (Oliver 1996: 32). It rests on a ‘traditional deficit approach’ (Shakespeare 2006: 30), which takes the onus of responsibility for disablement away from society and focuses on the shortcomings of the individual. The United Nations’ definition of disability leans towards this medical/individual model in the ‘World Programme of Action Concerning Disabled Persons’. Its...