Keywords

1 Introduction

This paper considers the positioning of disability studies, by its own exponents and others, as a discipline in its own right and in relation to other disciplines. It draws on Taylor’s (2006) historical analysis of the development of disability studies and disability studies in education, which demonstrates how the early critiques of labelling, stigmatisation and the medicalization of deviance have formed the basis of what we know as disability studies today. Taylor’s ethnographic analysis of a family’s encounters with disability, an exemplar of disability studies, is also examined.

The chapter offers some comparisons of the developments and tensions within disability studies in the USA and the UK, some of which have arisen from the diverse perspectives and theoretical orientations that comprise it (Taylor 2006). It explores questions of voice and power that have arisen through efforts to articulate and position disability studies as a distinctive field and in relation to other disciplines. It also considers the boundary work undertaken on behalf of disability studies and the consequences of some of its more policing-oriented manifestations. The extent to which disability studies has functioned as an inter-regnum, marking a gap between disciplines; a more productive form of interruption, which forces an interrogation of particular disciplines; or merely another kind of disciplining, is examined. The chapter concludes with a discussion of the prospects and possibilities for disability studies to become the “default paradigm” (Ware and Valle 2009, p. 113) and the implications of this for the scholars who choose to engage with and within it.

2 Not Another Tale of Development: Disability Studies Today

Steve Taylor (2011) points out that it is easier to determine what disability studies is not; for example, specifically not special education and not rehabilitation. Linton (1998a) also found the not distinction useful, marking a border between the socio-political study of disability and the more traditional interventionist studies and calling the latter “Not disability studies”. Nevertheless, Taylor identifies the crucial element distinguishing disability studies from other modes of inquiry, namely the recognition of disability as a social phenomenon, and helpfully shows how we arrived at what we call disability studies today. He offers a sociological lineage of deviance studies from the 1960s (Becker 1963; Goffman 1961, 1963; Scheff 1966; Scott 1969; Mercer 1965) that challenged the “nonsense questions” (Mercer 1965, p. 1) about the incidence and prevalence of disability and asserts that:

mental retardation is a social construction or a concept which exists in the minds of the “judges” rather than in the minds of the “judged”... A mentally retarded person is one who has been labeled as such according to rather arbitrarily created and applied criteria (Bogdan and Taylor 1976, p. 47).

Disability studies was formally given a status through the establishment of the Society for Disability Studies (SDS) in 1982 (Connor et al. 2008). Taylor notes the proliferation of disability studies programmes within the USA and offers a justification for this by pointing out that disability is part of the human condition and will touch almost everyone at some point in their lives. He also argues, however, that disability studies has the capacity to analyse every cultural and social aspect of life, from conceptions of normalcy to stereotyping and exclusion. Disability studies in education came to focus on the school’s role in constructing disability, identifying the phenomenon of the “six-hour retarded child”, whereby a child was only retarded within the context of school and on the basis of an IQ score (Taylor 2006), and questioned the legitimacy of segregation. Connor et al. (2008, p. 444) note the significance of the formation, in 2000, of the Disability Studies in Education Special Interest Group (SIG) within the American Educational Research Association for giving a voice to those educational researchers discouraged by the “insularity of special education’s traditionalism”. Disability studies in education have consistently delivered “fearless critiques of special education” (Connor 2013, p. 1229) that are defensible on account of their rigour and purposeful with their regard—always—for the disenfranchised and disadvantaged other. They have succeeded in “rewriting…discourses of disability” (Ferri 2008, p. 420) and have managed to “talk back to forces in education that undermine inclusive values” (Connor et al. 2008, p. 455). However, these successes have been accompanied by an awareness of the power of the orthodoxy to prevail.

Taylor notes that Dunn’s (1968) article Special Education for the Mildly Retarded: Is Much of It Justifiable? marked the start of what was for the special educationists (Kavale and Forness 2000) a series of attacks on segregation. The subsequent confrontations between special educationists and the so-called inclusionists have involved accusations by each side that the other is being “ideological” (Brantlinger 1997), with even challenges of “heresy” issued against Danforth and Morris (2006, p. 135). These somewhat unsophisticated attacks, in which the opponents merely trade insults and talk past one another (Gallagher 1998), have led to a continuing enmity between advocates of inclusion and special education that seems incapable of resolution. Whilst in the USA these ideologically “inspired” confrontations have continued to shape the place and function of disability studies, the field of disability studies in the UK has been characterised by internal tensions, with some significant confrontations between the key proponents. Connor et al. (2008) mark the emergence of disability studies within the UK from the publication by the disability activist group, the Union of the Physically Impaired Against Segregation, of the Fundamental Principles of Disability (UPIA 1975). Some of the early disputes within the U.K. disability studies field centred on questions of authority and who had the right to speak about disability; others raised challenges about the place of the body in debates about disability and about the orthodoxy of the social model of disability (Shakespeare 2006). In a head-to-head between Mike Oliver and Tom Shakespeare, the utility of the social model of disability, introduced by Oliver and Finkelstein in the 1990s, was brought into question with Shakespeare (2006, p. 9) arguing that disability studies within in the U.K. had reached an impasse and that what has caused it to become “stagnated” (p. 1), the social model, should be abandoned:

Alone amongst radical movements, the UK disability rights tradition has, like a fundamentalist religion, retained its allegiance to a narrow reading of its founding assumptions (Shakespeare 2006, p. 34).

Oliver responded by denouncing this view and the book in which it featured as “a mish mash of contradictory perspectives” (Oliver 2007, p. 230).

Steve Taylor (2000) provides us with the gold standard of disability studies in his exemplary ethnography of a family’s encounters with disability. Taylor recounts the family’s success in eluding stigmatising and pathologising constructions of them, through their own immediate and extended networks and through their avoidance of the more austere institutions and facilities “that engulf people in a separate subculture” (Taylor 2000, p. 87). Taylor describes how the more he came to know the family, the more he realised that the questions precipitated by the stigma-oriented studies of the 1960s were not meaningful. He understood that their world was not constructed in opposition to, nor reproductive of, prevailing notions of stigma, but was a collaborative world that they both belonged to and constructed.

The family studied by Taylor, the Dukes, was described officially with labels of disability, mental retardation, or mental illness, with the head of the family, Bill, depicted by his state special school as a product of cultural-familial mental retardation (Taylor 2000, p. 70). Taylor, however, revealed how the master status that operated for the Dukes was familial, daughter, sister and so on, not that imposed by institutions through labels, and family kinship helped to shape social identities and formed strong social bonds. These strong social identities enabled the family members to engage with the institutional labels used on them without being defined or damaged by them: “the Duke family experience shows that small worlds can exist that do not simply reproduce the broader social contexts in which they are embedded” (Taylor 2000, p. 84). Taylor showed the stark contrast between the familial identities and those constructed by the official identities and identified four ways in which the family was able to avoid “the stigma and stained identities”(p. 58) of disability. First, the unit of the family served to interpret and organise everyday meanings, away from institutional constructions; second, the family network was extended and broad, with concomitant resources to draw upon; third, the family was entirely separate from those institutions, agencies, and organisations and from their attendant subculture; and fourth, the family members had acquired extensive competence, not discernible through standardised tests in literacy or numeracy, but nevertheless allowing them to function effectively in the world. This plausible counter-narrative to those that “dehumanize” (Bogdan and Taylor 1989, p. 146) and lead to an “underdevelopment of … consciousness” (Zola 2003, p. 243) underlines the potency and potential of disability studies.

At the same time as there has been a growth in disability studies that seek to undermine the pathologising and segregating of individuals, there has been what Hacking (2010, p. 633) refers to as a “boom industry” in autism narrative, with autism the “pathology of our decade” (ibid). He expresses greatest concern about the proliferation of fictional accounts, suggesting that these have contributed to forming a language with which to talk about autism. This “language-creation” (Hacking 2010, p. 637) plays an important role in helping “neurotypicals” (ibid)—which is how some autism advocacy groups have described ordinary, non-disabled people—understand more about the lives and experiences of autistic people. However, it also, as Hacking points out, feeds a fear and a fascination with the odd and leaves a sense of knowing autistic people in some universal way.

The emergence globally of a more critical form of disability studies is noted by Dan Goodley (2014a), who has of course been part of such a movement. This surfaced in response to a frustration with the materialist conceptions of disability studies, stemming from Marxist sociological interpretations, and their limited analytical capacity. Critical disability studies has also reinscribed the body in analyses of disability and utilised embodiment and the impaired body to force an examination of hetero-normativity. A centring of the disabled person has been effected coincidentally with the construction of the non-disabled person, “in order to look at the world from the inside out” (Linton 1998b, p. 14). Goodley (2014a, b) acknowledges concerns that, in becoming critical, disability studies may have become too much of an academic discipline and lost its political imperatives and its anchoring. He does suggest, however, that the logical next step for disabled people and their allies might be to unpack the complexity of disability.

3 Disciplining Disability Studies

Hacking (2008), who declares himself a “complacent disciplinarian” offers a cautionary note about the engagement with one’s discipline, based on his experience of individuals who have been “disciplined by disciplines”; that is, bullied by superiors into maintaining traditional structures of inquiry. His most direct experience of this comes from his own discipline of analytic philosophy where junior scholars are afraid, and are denied qualifications and jobs if they do not conform to the narrow conception of philosophy held by many of its gatekeepers.

The disciplining of disability studies, in the USA, the UK, and elsewhere, has come from multiple directions: internally, from within its own field; and from within academia and from other disciplines, through enjoinders to undertake interdisciplinary work. Whilst seeking to avoid the error of reification, I will consider how each of these disciplining forces work upon disability studies and its offspring, disability studies in education and critical disability studies, and reflect on their effects.

3.1 External Censure

Disability studies still struggles for acceptance as a serious discipline inside the academy. This struggle goes beyond any effects of the “dis-ing” of disability studies by the special educationists, but includes their efforts at disavowal. Lenny Davis (2013) recounts, albeit gleefully, the putdowns of his work by the medical establishment that draw attention to his literature, rather than scientific, qualifications. Kauffman (2015) rails against the celebratory or over-positive language used within disability studies, emphasising that some impairments are undesirable, and suggests that in particular Emotional and Behavioural Difficulties (EBD) is “actually something that is not so good to have” (p. 170). He goes further to suggest that some kinds of culture may be negative and indirectly criticises the disability studies practitioners for apparently regarding “any cultural difference as sacrosanct” (p. 173) and for actively preventing prevention, by only allowing intervention for “advanced cases or disasters” (ibid). Whilst an attack of this kind may provoke mere irritation at its repetition and lack of foundation, it is nevertheless important to acknowledge the continued need for reproach from the special school yard.

A more significant critique, particularly of critical disability studies, has come from Vehmas and Watson (2014), writers about disability who nevertheless choose to distance themselves at least from the more recent developments within disability studies. They argue that critical disability studies raises ethical issues and insinuates normative judgements without providing supporting ethical arguments and regard this failure to do so as morally irresponsible. They also argue that the concentration on how disabled people are categorised and labelled is inconsequential and demand both a “proper metric of justice”(p. 643) and a recognition of the negative nature of some impairments.

3.2 Insider Lament

Disability studies in education, whilst clearly still a discipline in development, has something of an exalted status and is protected vigorously and subject to its own self-discipline. The protectors of disability studies—guardians, rather than police—assume an authority on behalf of the discipline and those who have experienced its effects are not exactly “flogged by [its] institutional structures” (Hacking 2008), but may be kept outside and denied membership. Disability studies in education appears to exist and function as a semi-private club, with activities centred mainly around conference events. At these events, the successes of the discipline and its members are celebrated, rather than any achievements in tackling inequalities. As someone who has been inside and part of this process, this is not an easy criticism to offer, but it seems nevertheless to be an important one.

Connor et al. (2008) articulate some of the tensions produced within disability studies in education—by its own members. They describe how in the early days, much time and effort was spent in articulating what it was not, outlining its presence in relation to what was perceived as absent. The creation of this negative space was important in protecting the members from what was seen as a major threat—from researchers practising traditional special education but who were looking to rebadge their work under the more apparently respectable title of disability studies in education. There was, therefore, a genuinely good reason for guarding the gates; there was also an urgent need to define the essence and mission of disability studies in education. This created some challenges, but also brought a recognition that plurality was a significant, and possibly necessary, feature of both disability studies and disability studies in education. Steve Taylor (2006, p. xiii) underlines this:

Neither Disability Studies nor Disability Studies in Education represents a unitary perspective. Scholarship in these areas includes social constructionist or interpretivist, materialist, postmodernist, poststructuralist, legal and even structural–functionalist perspectives and draws on disciplines as diverse as sociology, literature, critical theory, economics, law, history, art, philosophy, and others.

This plurality does, of course, invite scorn from the special educationists; it also creates an assumption that those carefully guarded gates will be opened, from the inside.

3.3 Inter-Regnum

The final mode of disciplining the discipline of disability studies has been through the insertion of an “inter-regnum” (Hartley 2009, p. 127) and an expectation that disability studies will work with and between other disciplines. The language of public services is becoming similarly infused with the prefixes “inter”, “multi”, and “co”, which are forced upon professionals along with the enjoinder that they should work together. And, of course, increasingly there is an obligation to undertake analyses of oppressions that are intersectional, without any clear indication of how these might be achieved. Hartley (2009) points out that the “inter-regnum” (p. 127) within the public services disturbs accepted understandings about school and expectations of professionals and blurs the distinction between consumer and provider. Inclusion, in this new configuration, is thus a shared responsibility, among professionals and involving parents, and one where the lines of accountability are (even) less clear. Similarly, we might suspect that the inter-regnum in relation to other disciplines or to other arenas of oppression could effect a similar blurring or could merely allow a dominance of the more powerful voices.

Hacking (2008) records his suspicion of the inter-regnum visited upon disciplines and seeks to “put in a word for collaborating disciplines that do not need to be, in any important sense of the word interdisciplinary”. He reflects on whether the anthropologist Mary Douglas should be considered an interdisciplinarian because of her forays into art history, biblical studies, urban sociology, and several other domains, or whether instead she simply “applies her keen and totally unconventional mind and skills where she is interested” (Hacking 2008). He suggests that one way to be interdisciplinary is to be “curious about everything” but appears to be discouraging any interdisciplinary aspirations, advocating collaboration over interdisciplinary work, and characterising the former by an openness, curiosity, and mutual respect:

In my opinion what matters is that honest and diligent thinkers and activists respect each other’s learned skills and innate talents. Who else to go to but someone who knows more than you do, or can do something better than you can? Not because you are inexpert in your domain, but because you need help from another one. I never seek help from an “interdisciplinary” person, but only from a “disciplined” one. Never? Well, hardly ever. (Hacking 2008)

Hacking strongly recommends a combination of curiosity and discipline, the latter inspired for him by Leibnitz, and avoiding the creation of disciples. In the final section of this chapter, I offer some reflections on the prospects and possibilities for disability studies as an inevitable and obvious form of scholarship.

4 Disability Studies by Default

Linda Ware (2001) issued the challenge, “dare we do disability studies?” (p. 107), demanding that disability be “thought and thought otherwise” (p. 112) and, in so doing, underlined the requirements for boldness, tenacity, and even humour. Ware and Valle (2009) also argued that disability studies should become the “default paradigm” (p. 113), a necessity particularly within teacher education, to “dislodge the silence buried deep within the uninspired curriculum that restricts teacher and student imagination” (Ware 2001, p. 120). Bogdan and Taylor (1989) see the recognition of the humanness of severely disabled people, achieved through disability studies, as an act of humanity in itself and argue that it is not a matter of individuals’ physical or mental condition but a “matter of definition” (p. 146). Goodley (2014a, b, p. xvi) suggests that the crucial function of disability studies is the help it offers to the “normal” to move out of their “normative shadows” and calls for an politics of abnormality to be embedded within disability studies.

In considering how we might go on with disability studies, some attention to the space in which it takes place, the people involved, and the work undertaken seems timely and these are addressed below.

4.1 The Space

The space in which we might do disability studies is necessarily one that needs to be created and made to work for us, rather than involving the capturing of pre-existing and inevitably tainted spaces. Goodley (2014a), following Lash (2001), suggests that such a space should be “lifted out” (p. 641) and should allow simultaneously for thinking, acting, engaging, and resisting, whilst Latour (2004) characterises it as a space of “mediating, assembling, [and] gathering” (p. 248). The space could also be made for demonstration in a way that takes up the “demos”, meaning the people, and materialises them through a process of “demos-stration”, “manifesting the presence of those who do not count” (Critchley 2007, p. 130). Arendt (1958) advocates seeking out spaces for public action, suggesting that these may be anywhere and invoking the polis as meaning the “space of appearance” (p. 198) and a space for political action:

The polis, properly speaking, is not the city-state in its physical location; it is the organization of the people as it arises out of acting and speaking together, and its true space lies between people living together for this purpose, no matter where they happen to be (p. 198).

Arendt extends an invitation to the academic to undertake such political work, but recognises that academe has never succeeded in achieving Plato’s vision of being a “counter-society” (2006, p. 256). Nevertheless, the civic responsibilities of academics for “pricking the consciousness of the public” (Zola 2003, p. 10) are clear.

4.2 The People

In spite of Simi Linton’s (1998a) enjoinder to non-academics to challenge the “minimal presence of disabled scholars in their institutions” (p. 538), there is still an under-representation of disabled scholars in higher education. Institutions’ equality policies encompass disability but privilege the more visible and measurable gender and ethnicity characteristics. Disclosure of disability within the university as a place of work remains a big deal, especially where this might involve mental health issues. There is much to do in order to foreground the expertise of disabled people in research about disability (and everything else) and in academic institutions generally.

Disability studies is an obvious domain for scholars who want to do work that can make a significant difference and the prospect of joining such an accomplished group will appeal to many. But there are potential risks for early-career scholars entering this particularly charged part of the academy. Many of the dissenters occupy powerful positions within institutions and can exert influence on dissertation committees and appointment and promotions panels. It is vital that established academics use their seniority to advocate for and support more junior staff and to counter negativity from outside the field. Steve Taylor was exemplary in this respect, described as “quiet yet transformative” (Fujiura 2015, p. 1) by one of the many scholars he mentored, and Syracuse, under the leadership of Doug Biklen, has provided a particularly nurturing environment for disability studies scholars. Barton and Clough (1995) urged academics to consider their power and privilege more generally:

What responsibilities arise from the privileges I have as a result of my social position? How can I use my knowledge and skills to challenge, for example, the forms of oppression disabled people experience? Does my writing and speaking reproduce a system of domination or challenge that system? (Barton and Clough 1995, p. 144).

Linda Ware has been a consistent voice in calling for new alliances with academics in the humanities (Ware 2001) and these disciplines remain our best bet for any kind of meaningful engagement within the academy. But Hacking (2008) encourages a further reach into perhaps unexpected disciplines, guided by curiosity rather than propriety. As has been alluded to earlier in this chapter, Hacking considers it potentially too limiting to call such engagement across diverse spheres interdisciplinary work. He prefers to name it as collaboration, involving not breaking down of boundaries but respect. This is a characteristic of the work being advocated and discussed below.

4.3 The Work

The work of disability studies undoubtedly involves critique, whether it calls itself critical disability studies, disability studies in education, or something else yet to be thought of. The academic practising disability studies is, therefore, a critic:

The critic is not the one who debunks, but the one who assembles. The critic is not the one who lifts the rugs from under the feet of the naıve believers, but the one who offers the participants arenas in which to gather. The critic is not the one who alternates haphazardly between antifetishism and positivism like the drunk iconoclast drawn by Goya, but the one for whom, if something is constructed, then it means it is fragile and thus in great need of care and caution. (Latour 2004, p. 246).

The purpose of critique is to understand the political ends intended by specific practices and to make these explicit, serving, as Said (1995) suggests, “as public memory to recall what is forgotten or ignored” (p. 503). It is not, Foucault (1988) contends, “a matter of saying that things are not right as they are” (p. 154), but rather “of pointing out on what kinds of assumptions, what kinds of familiar, unchallenged and unconsidered modes of thought the practices that we accept rest” (p. 155). The focus of critique is principally the under-represented, the disenfranchised and misrecognised other, with the naming and privileging of their voices and identities, making a discourse of that which has formerly been a noise (Rancière 2008,) and producing rupture:

For me a political subject is a subject who employs the competence of the so-called incompetents or the part of those who have no part, and not an additional group to be recognised as part of society. “Visible minorities” means exceeding the system of represented groups, of constituted identities.… It’s a rupture that opens out into the recognition of the competence of anyone, not the addition of a unit (p. 3).

The critic wades into the “conflict between truth and politics” (Arendt 2006, p. 227) and attempts to “find out, stand guard over, and interpret factual truth” (ibid, pp. 256–257). However, the critical work invoked here amounts to far more than truth-telling, and is positive and constructive, pointing to new ways of conceptualising and critiquing disability and new forms of political action arising from this critique.

Because critique involves engaging in exercises in political thought, practice and training is required (Arendt 2006). Critique, thus, is a form of training that does not prescribe what we should think but helps us to learn how to think and offers a fighting experience gained from standing one’s ground between “the clashing waves of past and future” (Arendt 2006, p. 13). This is exemplified in Kafka’s parable:

He has two antagonists: the first presses him from behind, from the origin. The second blocks the road ahead. He gives battle to both. To be sure, the first supports him in his fight with the second, for he wants to push him forward, and in the same way the second supports him in his fight with the first, since he drives him back. But it is only theoretically so. For it is not only the two antagonists who are there, but he himself as well, and who really knows his intentions? His dream, though, is that some time in an unguarded moment … he will jump out of the fighting line and be promoted, on account of his experience of fighting, to the position of umpire over his antagonists in their fight with each other. (Cited in Arendt 2006, p. 7)

A methodology for critique, which enables the identification of erasures, closures, and silences, has been developed by Edward Said (1993, 1999) through an elaboration of the concepts of contrapuntality and fugue, taken directly from Western classical music. This methodology allows for the representation of identity and voice and for the “the telling of alternative stories by those that are currently marginalized and exiled” (Chowdry 2007, p. 103). It seeks to speak of both oppression and resistance to it, achieved by “extending our reading of the texts to include what was once forcibly excluded” (Said 1993, p. 67), but recovering these voices and dissonances. Contrapuntals allow various themes to play off one another without privilege being accorded to anyone. The wholeness of the piece of music comes from that interplay of the themes, which can be as many as 14, as in Bach’s Art of Fugue, but with each of them distinct. As Symes (2006) notes, “History is a giant fugue of interweaving themes and voices, of subject and reply. A contrapuntal reading of culture entails the entire constellation of its voices” (p. 324). Chowdry (2007) points out that contrapuntal analysis is more a simple appeal for a plurality of voices, but is a call for “worlding the texts, institutions and practices, for historicizing them, for interrogating their sociality and materiality, for paying attention to the hierarchies and the power-knowledge nexus embedded in them. It is also a plea for the recovery of what Said (2000, p. 444) calls ‘non-coercive and non-dominating knowledge’ ” (p. 105). A contrapuntal analysis, characterised by “counterpoint, intertwining and integration” (Chowdry 2007, p. 107), destabilises conventional readings and “reveals the hidden interests, the embedded power relations and the political alignments” (ibid).

A contrapuntal analysis of disability would involve a reading of disability as culture and of attending to its practices of description, communication, and representation through which certain narratives succeed in blocking others and whereby particular “philological tricks” (Said, cited in Chowdry 2007, p. 110) allow disability culture to be rendered distinct from the rest of the world and inferior. Crucially, contrapuntal analysis would also seek out those voices of disability culture “which flow across cultures, that defy space and time, that start local, become global” (Symes 2006, p. 314). Furthermore, contrapuntal analysis has a particularly exciting potential for intersectional analysis and the interrogation of disability in its counterpoint with race, class, gender, and other forms of oppression. It takes us beyond analyses of oppression, however, by taking us away from the positioning of antagonisms, of “absurd opposition” (Said, quoted in Salusinszky 1987, p. 147), and of disadvantage always being presented as caused by another’s advantage. It offers instead a “mollifying (though note not solving)” (Symes 2006, p. 320) by allowing different elements to sit in relation to one another in a kind of “fugal resolution” (ibid, p. 321).

5 Disability Studies to Come

Nussbaum (2006) reminds us that we still lack a theory that deals adequately with the needs of citizens with impairments and disabilities, as most of these are based on political principles of mutual advantage. We lack so much more in the field of disability studies but also have so much to gain and to give. On the matter of giving, Steve Taylor again provides a measure or a moral compass (Linton 2009), with the mixture of curiosity and outrage, coupled with the most assiduous scholarship, that drove the production of his seminal text, Acts of Conscience: World War II, Mental Institutions and Religious Conscientious Objectors. Taylor’s (2009) desire to understand “how society can dehumanize, marginalize, and systematically discriminate against people with real or presumed, intellectual, mental or physical disabilities” (p. 382) is one that ought to compel us all.