“Disability Studies,” The Year's Work in Critical and Cultural Theory 23 (Oxford University Press, 2015) doi:10.1093/ywcct/mbv007Z.

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Disability StudiesDisability Studiesmichael rembis

In this article, I review seven books published in disability studies in 2013and 2014. Two of the books deal exclusively with the North Americancontext. The remaining five books focus primarily on areas outside NorthAmerica, including Europe, Asia and Latin America. Two of the books areedited anthologies of new and original work. Four books are single-authoredmonographs and one book is co-authored. A search of new work publishedin 2013 and 2014 revealed more than twenty books. As a way of narrowingthe focus and organizing the essay, I begin with a critique of key issues raisedin Lennard J. Davis’ The End of Normal: Identity in a Biocultural Era

(UMichiganP [2013]) and go on to show how authors living and/or workingin other parts of the world are engaging with, building on and divergingfrom what could be called a white, Western global North disability studies.In the end, I argue that decentring North American and UK disability studiesreveals significant field-changing insights that will no doubt have profoundand lasting effects on the study of disability and disabled people in thehumanities and social sciences.

In his recent publication, The End of Normal: Identity in a Biocultural Era

(UMichiganP [2013]) prominent cultural critic Lennard J. Davis has arguedthat we are witnessing ‘the end of normal’. After twenty-five years livingwith the Americans with Disabilities Act (ADA), and other similar laws andinternational declarations, and nearly fifty years living with the identitypolitics that gave rise to the social movements that forged modern civilrights legislation in the US, Davis asks: ‘Is it possible that normal, in itslargest sense [. . .] is playing itself out and losing its utility as a driving forcein culture in general and academic culture in particular?’ (p. 1). He goes onto offer a provocative answer to his own question. A self-described icono-clast, Davis, sees his ‘central work as [. . .] a form of rethinking the truismsof the field’ of disability studies (p. ix). In what follows, I will use Davis’

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recent book as a means of entering into a review of work that has emergedout of disability studies in 2013 and 2014.1 My hope is that by engaging in adiscussion of The End of Normal and its larger implications for the field, I canspeak to intellectual trends that have come to occupy an important positionwithin scholarship in disability studies. Tremendously important changeshave taken place in disability studies and in the ‘lifeworlds’ (Mehrotra, re-viewed below) of people with disabilities. Yet, I do not know that we arequite ready to declare the end of normal.

In The End of Normal’s titular chapter, Davis, who has written on every-thing from obsession to deafness argues that, ‘normality is no longer thedefining term in social organization’, and that, ‘diversity now seems to bedoing the work of normal in sorting populations’ (p. ix). Davis states de-finitively that, ‘diversity is the new normality’ (p. 1). He contends that diver-sity has become the new normality, because it is ‘well suited to the corebeliefs of neoliberalism’, which among other things ‘reconfigures the citizeninto the consumer’ (pp. 2–3). All of those able to consume are welcomeunder the banner of diversity, which ‘imagines a world without a ruling goldstandard of embodiment’, except in the case of people with disabilities(p. 3). According to Davis, even in a world that favours diversity, disabledpeople exist in a state of exception or hyper marginalization. Disabled peopleoccupy a greatly devalued subject position vis-a-vis their nondisabled coun-terparts, because unlike the latter, ‘[d]isabled bodies are, in the currentimaginary, constructed as fixed identities’; they are ‘sharply defined by med-ical diagnosis and sometimes [are] assigned to an abject position as ‘‘a life notworth living’’’ (pp. 5–7). Unlike other neoliberal subjects, disabled peopledo not get to choose their identity. They are, to use Davis’ own neologism,‘undiverse’. Even within the existing paradigm of neoliberal diversity, dis-abled people ‘have to be diagnosed, and in many cases [they] will have anongoing and very real defining relationship with the medical profession’(p. 8). In the current context, Davis contends, disability is not seen ‘as alifestyle or an identity, but as a fixed category’ and therefore it exists outsidethe bounds of neoliberal diversity (ibid.).

This reasoning leads Davis to ask whether diversity can ever includedisability. His answer, of course, is no. Davis concludes that, ‘as an intellec-tual idea [diversity], does not have much to offer’ disabled people or dis-ability theorists. ‘The problem with diversity,’ Davis asserts, ‘is that it reallyneeds two things to survive as a concept. It needs to imagine a utopia inwhich difference will disappear . . . [and] it needs to suppress everything thatconfounds that vision’ (p. 13). For Davis, disability and poverty, which hementions only in a parenthetical note, are the two things that confound the

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utopian vision that one day difference will disappear. According to Davis,neoliberal diversity needs disability (in its current fixed, medicalized, abjectrendering) to survive, because its ostensibly immutable essence is the dif-ference against which all other notions of diversity are measured (p. 14). Ashe phrases it, ‘disability is the ultimate modifier of identity’ (ibid.). In theend, Davis concludes that: ‘For diversity to be able to embrace disability, itwill take more than consciousness-raising and political activism, both veryimportant in their own right—it will take an entirely other paradigm shift’(p. 9). Although Davis does not offer a clear vision of what this paradigmshift might look like, it seems to involve the notion that if disability wereconsidered a lifestyle or identity ‘choice’ then it could be included in thepantheon of neoliberal diversity.

While I do not disagree with Davis completely, I find his thinking aboutdiversity, normality, and identity potentially hazardous, both politically andintellectually. The majority of the world’s disabled population is indeedexcluded from neoliberal notions of diversity, but their exclusion is notrooted in individual abject bodies or ‘spoiled’ identities. (Here I am riffingon Goffman’s notion of the spoiled identity, something Davis does not do.See Erving Goffman, Stigma; Notes on the Management of Spoiled Identity(Prentice-Hall [1963]).) They are not the other ‘other’. Neoliberal diversitydoes not need disability to survive (as Davis asserts). Neoliberal diversityneeds global capital to survive, and likewise capitalism needs neoliberalnotions of diversity to survive. If we adopt what some disability theoristsmight call a ‘social model’ understanding of disability, people living with abroad range of impairments in all parts of the world are only disabledinasmuch as they are removed from dominant systems of productionand consumption. If we were to use Davis’ terms, we might say that the‘undiverse’, those folks occupying the abject state of exception and hyper-marginalized space outside dominant neoliberal understandings of diversity,are not by definition, or even necessarily people who inhabit an anomalousbody. Rather, they are those folks who are unable, for whatever reason, to beactive producers and consumers in a global capitalist economy. Once oneleaves the ranks of the poor and ‘dependent’ and becomes a ‘productive’citizen and a ‘member’ of society they are fully capable of leaving theirabject subject position behind and entering the mosaic known as neoliberaldiversity—often in spite of their own embodiment. This does not mean,however, that both ‘disablism’ and ‘ableism’ (Goodley, reviewed below) donot continue to thrive and that various impairments do not impose realrestrictions on people’s lives. What I am proposing is that those impairmentsare increasingly rendered invisible and inconsequential (from an outsider’s

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perspective) as one’s perceived ability to accumulate wealth and consumeincreases. ‘Neoliberal-ableist’ (Goodley) notions of inclusion, what Daviscalls diversity, rest not necessarily upon abstract and ill-defined conceptual-izations of identity or abject bodies, but rather upon the social relations thatserve to maintain dominant economic and political structures.

Although he gives a brief nod toward poverty and what he refers to as thelargely unchallenged ‘power and wealth difference’ (p. 13) in neoliberalthinking, it could be argued that Davis misses almost entirely what wemight call the materiality of the social relations of disability—that globallythere are 785 to 975 million people over the age of 15 living with a dis-ability; that women experience disability at rates that are nearly 60 per centhigher than those for men; that people with disabilities living in both ‘de-veloped’ and ‘developing’ countries have lower employment rates and lowereducational attainment and tend to be poorer than their nondisabled coun-terparts.2 And ultimately that it is not necessarily one’s disabled identity butrather well entrenched structures of inequality and the exploitation of bothhuman bodies and natural resources that prevent disabled people from escap-ing their predicament. Instead, Davis roots disabled people’s oppression intheir (‘spoiled’) identity, which in the end leaves him offering us little morethan what he calls ‘disability pride’—actually in this case ‘depressionpride’—and a concept he refers to as ‘dismodernism’ as a means of trans-forming society. While the desire to move disability away from its fixed,medicalized and abject representations toward a more positive understandingthat sees it, to use Davis’ words, as ‘a way of life involving choice’ (p. 7)—which is what both disability pride and dismodernism seek to do—is laudableand in line with some aspects of the global disability rights movement, it willnot remedy the material inequalities that plague the existence of the majorityof the world’s disabled population, in part because it employs the very sameneoliberal notions of choice it seeks to critique in an effort to empowerdisabled people. It may also do further harm to the growing global disabilityrights movement by silencing disabled voices that fall outside the limits ofnarrowly defined notions of ‘disability pride’, which are often dominated byactivists and academics living with certain types of disability in the West, orglobal North.

I find it curious, and deeply unsettling, that in a study that declares theend of normal and claims to redefine disability identity, there are very few ifany disabled voices. This not only runs counter to the long-held belief of‘nothing about us, without us’, it also ignores a broad swath of scholarshipthat has sought to complicate our understanding of disability identities, thesocial model of disability, and the medical model of disability by thinking


critically about the role of pain and chronic disease in our lives, the value ofcure, treatment and recovery, the complex interactions between patients andvarious health professionals and medical structures, and more generallyabout what the disability theorist Tobin Siebers has called disabled people’s‘complex embodiment’.3 Engaging with this scholarship and bringing in thelived experiences of people with disabilities would help Davis to complicatehis assertion that: ‘Outside of the hothouse of disability studies and sciencestudies, impairments are commonly seen as abnormal, medically deter-mined, and certainly not socially constructed’ (p. 7). Despite the misgivingsthat some disability studies scholars have for what Goodley (discussed below)calls ‘supra-national’ liberal doctrines meant to address disability rights ashuman rights, it is readily apparent in documents such as the 2008 UnitedNations Convention on the Rights of Persons with Disabilities and the 2011World Health Organization World Report on Disability that ‘disability’ encom-passes a broad range of social, economic, environmental, structural andmedical factors. These important documents represent the culmination ofdecades of activism on the part of people with disabilities and their allies. Toreduce popular understandings of disability to medically determined abnor-mality is not only inaccurate, it flies in the face of (in some countries) nearlyfifty years of activism. Though they may not use the precise terms laid out byDavis, scholars, as well as disabled people themselves and their allies, havebeen arguing for quite some time that commonly held notions of ‘disability’,‘abnormality’ and ‘medicine’ are both historically and culturally contingent;they are fluid and they change over time and between and among cultures.Some activists have even gone so far as to say that everyone is only temporarilyable-bodied and that disability is mostly, if not wholly situational; that one canbe disabled in one setting and nondisabled in another setting. While we mustbe careful not to declare our work complete, we must acknowledge thatreducing popular understandings of disability to medically determined abnor-mality misrepresents the current state of affairs in most parts of the world.Once we have done this, then we can begin to build new theories of disabilityoppression that grapple in meaningful ways with the embodied realities ofdisabled people’s lives and the materiality of the social relations of disability.

I agree with Davis that neoliberal notions of inclusion (diversity) havelittle to offer disability theorists or disabled people. However, I also thinkthat Davis’ brand of post-postmodern identity politics (dismodernism),which relies upon a totalizing vision of ‘abject’ subject positions and astark distinction between ‘the disabled’ and the acceptably diverse, is equallyproblematic. This reasoning, or model of disability oppression, relies uponan erasure of two important things: (a) disabled people and their voices, in


all of their complexity and (b) the accomplishments of the global disabilityrights movement, whose achievements Davis obscures with his simplifiedversion of popular views of disability and existing social policies. Seeing themajority of disabled people as complexly embodied and occupying a struc-tured place of oppression rather than merely inhabiting a ‘spoiled’ identity(however intersectional) allows us to move away from individualized andatomized (postmodern and neoliberal) understandings of their subjectivity,toward a more collective and materially based understanding of their pre-dicament. We will not get closer to the world we want to live in without amore nuanced and materialist analysis of historical and structural causes ofdisability oppression; a genuine appreciation of the complexity of disabledpeople’s lives and what the disability rights movement has accomplished; andfinally, some way of moving away from an identity politics based on singularidentifications (or dismodernisms) that still leaves room for recognizinggalvanizing commonalities while appreciating difference.

Recent scholarship in disability studies has done some of this work. DanGoodley’s Dis/Ability Studies: Theorising Disablism and Ableism (Routledge[2014]) offers a compelling mix of broad theorizing based on his readingand synthesis of a multitude of secondary works both ‘inside’ and ‘outside’disability studies, as well as insights derived from original research. Thecliche ‘tour de force’ comes to mind while reading this thoughtful, engaging,and at times irreverent—one parenthetical citation reads ‘(Google it)’—book (p. 36). In just 175 pages, Goodley has managed to capture and high-light the intellectual trends that have been driving disability studies in theUnited Kingdom and North America for well over two decades. With chap-ters on ‘Disableism’, ‘Ableism’, ‘Intersectionality’ and ‘Dis/ability Studies’,Goodley’s book is an ideal reference for advanced graduate students andexperts in the field. Its blistering pace and extensive in text citations mayintimidate or confuse newcomers to the field.4

The effectiveness of Goodley’s writing lies in his ability to offer a judiciousrendering of everything from the social model of disability and medicalization,to postconventionalism, poststructuralism, crip theory, trans-humanism, femin-ist disability studies, critical race theory, and more materially based understand-ings of disability experiences, while simultaneously marshaling these seeminglydisparate approaches to studying disability and disabled people in a powerfulcritique of the current neoliberal moment. In doing so, Goodley eschews anysimplified or binary understanding of disabled bodies or disabled lives. Instead,he opens up possibilities for future theorizing and future scholarship by impli-cating a broad array of structural, social, and psychological factors in producingand reproducing disability. While he embraces the power of postmodern


thinking, Goodley is clearly grounded in the material. He argues that, ‘historicalmaterialist accounts of disablism offer indispensable insights into [the] exploit-ative workings of capitalism. To deny these practices, particularly in today’sthreatening, economic times, would be suicidal’ (p. 8). Goodley goes on toquote Mawyer (Atenea [2005]) stating that, ‘unless we recognize the contribu-tion of a materialist critique of structural oppression and exploitation in capit-alism, disability studies will ‘‘remain only a gesture and little more’’’ (p. 8). Heinvites us to ask: ‘How are dis/abled bodies crafted in the social?’ (p. 84).Without losing sight of the profound potential of disability and disabled bodiesto upset commonly held conceptualizations of normative bodies and minds,Goodley reminds us that: ‘All bodies are potentially crip: they are destinedto failure in the [neoliberal-] ableist landscape’ (p. 43). He argues that many ofus fail to match up to neoliberalism’s ‘impossible ideal of personhood’, andciting Vandekinderen argues that, ‘the social construct of normality mainly con-cerns employability’ (pp. 31–2, italics in the original). For Goodley, ‘the able-bodied category is always and only provisional, requiring constant replenishment[. . .] The neoliberal-able self is always making and repairing itself’ (p. 30).Drawing on the work of the Marxist geographer David Harvey, Goodleyurges us to accept that, ‘all dis/abled bodies are embedded in a social processthat never renders such bodies docile or passive but energizes these bodies as‘‘form-giving fire’’ of the capacity to labour’ (p. 94).

In his characteristically balanced style, Goodley recognizes the tremen-dous transformative potential of disability studies, while also remaining crit-ical of its overwhelming focus on the global North and ‘developed’ Westernnations. Goodley declares that in these ‘neoliberal-ableist times disabilitypolitics and theories of ableism/disablism have never been in moredemand’ (p. 34). He defines ableism as the structural omission of disabledpeople from a world built by and for nondisabled humans, while disablismconsists of the individual acts of discrimination and marginalization thatmanifest on both an interpersonal and systemic or institutional level.Ableism is to patriarchy as disablism is to misogyny. Disability Studies(and disability activism) holds powerful potential to undo both ableismand disablism, because it ‘crips [challenges or redefines] narrow concep-tion[s] of what counts as human’, and as work and productivity (p. 39).Goodley uses the hypothetical case of a young disabled man with ‘profoundphysical impairments and learning disabilities’ to illustrate his point. Thatthis young man:

coexists with many others in a circle of support . . . broadens ourunderstandings of what it means to be a valued member of his


community or, for that matter, what it means to be human. . . . Thecomplexity of living a life with others—of interdependence inpractice—is clearly displayed. He therefore demands new vocabul-aries and new ways of understanding and valuing the ways whichenact being human. He crips taken-for-granted neoliberal-able con-ceptions of what it means to be an active citizen (unitary, alone,isolated) and starts a very different conversation about the human(together, sharing, mutuality). (ibid.)

Yet all is not well in disability studies. As Goodley notes, critical disabilitystudies in the majority world is continually (and increasingly) exposing thehegemonic status of white, Western, middle-class disability studies, and itsunending exportation of its ideas from North to South; a colonial or imperialproject that assumes that, citing Grech, ‘disability theories and writings fromthe West are transferable across the globe with few or no modifications’ (p. 18).

Nilika Mehrotra provides an important counter to white, Western,middle-class disability studies in her richly detailed and carefully craftedanalysis of disability and gender among the women of the state of Haryanaand the city of Delhi, India. Disability, Gender and State Policy: Exploring

Margins (Rawat Publications [2013]) consists of previously published articles,many of which have been ‘thoroughly revised’, and new material that was‘freshly written for the volume’ (p. 28). Mehrotra is an anthropologist whodescribes herself as someone who has been doing gender since the 1980s.Disability, Gender and State Policy is the result of ten years of ethnographicfieldwork conducted throughout India by Mehrotra and her graduate stu-dents. The book is organized into nine chapters that focus on state policy andNGOs in India; the disability rights movement in India; conceptions ofdisability in the state of Haryana; constructions of intellectual disabilityand personhood in Haryana and Delhi; gender and disability in ruralHaryana; disability, sorority (among disabled women) and social space;what Mehrotra calls ‘psychosocial’ disabilities among poor urban women;and finally what she calls the ‘multiple marginalities’ of disability, gender andcaste in India. In her own, modest words, the book is a ‘humble effort’ tocontribute to the growing literature in disability studies in South Asia thatdeals with the experiences of disabled people in everyday life and their rolein understanding the nature of disability, which is still ‘rather rare’ (p. 28).While she acknowledges that the British social model of disability can behelpful in analysing the state and state policies in relation to the lives ofpeople with disabilities in India, much more is required of scholars doingwork in South and East Asia (p. 51).


Mehrotra bases her thinking about disability in India on the premise thatit is multidimensional, complex and contested, and that it elicits equallyvaried responses. She asserts that: ‘It, thus, becomes increasingly difficult todraw a common definition examining disability’ (p. 25). Located in unequalsocial structures and marked by hierarchies of religion, caste, age, genderand ethnicity, the predicament of people with disabilities in India can best beunderstood in its situational context. Disability cannot be understood as asingular marker of identity. Rather identities should be understood as ‘fluid,fragmentary and multiple’ (p. 44). Mehrotra further argues that disabilitylocates certain Indian citizens:

in a compromised position, not only as a function of biology but alsoas a product of a complex interactions among non-biological factorslike [. . .] neighbourhood relations and the nature of kinship andfamily structure [and often in] contradictory ways. (p. 46)

She makes a call for scholars living and working in South and East Asia tolocate ‘restrictions at structural level’, and also to explore the ‘lifeworlds’ andstrategies of disabled people and their families within both local and globalframeworks (p. 46). Mehrotra urges disability studies scholars ‘to produce richethnographies which may elucidate new propositions and help towards rele-vant praxis’ (ibid.). ‘We need thick descriptions,’ Mehrotra declares, ‘ofdisabled located in specific context to make sense of how their personhoodis diminished and what are the ways in which their agency can be understood’(p. 44). For Mehrotra, ‘any kind of theory building has to be on the basis ofexperiential realities of person situated in their historical and cultural specifi-cities’ (p. 28). She admits, however, that until very recently there has been a‘heavy dependence’ on western theories and concepts among scholars doingresearch on disability in India. There have been few comparative studies, andresearchers have ‘yet to come up with indigenous theories and strategies toexamine disability in global South context’ (p. 47).

The dearth of scholarship and theorizing in disability studies in South andEast Asia is a product of local histories and cultures, but it also can beattributed to global economic structures and the colonization of academicand activist discourse and global ‘disability policy’ by white, Western/Northern elites. Mehrotra recognizes that for the last three decades muchgroundwork has been laid by disability rights movements in various parts ofthe world, and new conceptualizations of disability have been articulated byscholars, but those scholars and those activists have been largely working in‘western countries’. As a result, politics and theories in the global North thatare informed largely by the experiences of disabled people living in


‘developed’ countries are ‘taken as a reference in other parts of the world’(p. 27). Much of the literature in disability studies has a ‘euro-centric bias’and for a long time there was ‘little reference in the western literature to thenature, extent and experience of disability in the global South context’(ibid.). According to Mehrotra, global North disability studies literature‘suffers from assumed universalism and essentialism’, and from takingthe experience of disability as ‘homogeneous’ (ibid.). Often, and untilquite recently, disability studies scholars made little effort to ‘considertime, space and sociological variables like nationality, religion, ethnicity,race, gender, etc’ (ibid.). Mehrotra asserts that an understanding of disabilitythrough what western colonizers commonly refer to as a ‘developmentmodel’ is by far the most influential way in which disability is conceptualizedin the global South. The narrative of poverty breeding disability is a verypowerful trope through which the global North comes to articulate andunderstand the realities of the lived experiences of disabled people in theSouth. Indeed, countries like Bangladesh, India, Pakistan and Sri Lanka aremarked by pervasive poverty, low per capita income, low literacy rates, highinfant mortality and low life expectancy, as well as a ‘substantial burden ofpreventable diseases’ (p. 44). International development discourse largelyand often uncritically utilizes the social model of disability to encourage therights-based claims of people with disabilities as citizens. Mehrotra makes theimportant observation that: ‘Organizations serving people with disabilitiesare increasingly promoting what is referred to as a rights-based approach todisability’ (pp. 27–8). Yet, little attention has been paid both by disabilitystudies scholars and by organizers and activists to the ways in which inter-national discourse and health policy affect the ‘program design, implemen-tation, and everyday work of organizations addressing disability andrehabilitation’ (ibid.). ‘Further,’ Mehrotra contends, ‘there is little under-standing of the manner in which local disability organizations appropriate andtransform this discourse; formulating local definitions of disability, disabilityrights, and citizenship’ (ibid.).

Western, or Northern scholars, those writing from ‘developed’ coun-tries often ask questions such as: why are disability and poverty so interrelated inthe global South? Who is responsible and who profits? While well-intentioned andcertainly important, such questions serve to promote and perpetuate out-sider perspectives on disability in the global South, as well as the neocolonialimperatives of the academic left. Clearly, disability in the global South isfirmly linked to western/northern imperialism and centuries of colonizationand globalization. Yet scholars living and working in South Asia have felt theneed to situate the lived experiences of people with disabilities in places like


India in terms of their own history, culture and social specificities. Theyargue for a much more diverse, differentiated view of disability consideredthrough the lens of ‘local and indigenous categories’ (p. 38). Mehrotra citesMiles (Asia Pacific Disability Rehabilitation Journal [2002]) as one researcherwho has been critical of importing western models to understand the ex-periential realities of disabled people and ignoring local cultural factors indisability rehabilitation programs. Other researchers working in the socialsciences have written about creating alternative discourses from the Asiancontext. Still others suggest that:

the solution to academic imperialism is not to altogether do awaywith western concepts, but to adopt a more realistic understanding ofwestern social science as reflecting particular geographic and his-torical contexts (p. 39).

Global South researchers argue that North and South should be seen as‘relational and dialectical rather than as absolute ontologies’ (ibid.).‘Empirically speaking,’ Mehrotra asserts, ‘it may be imagined, that theline between North and South is endemically unstable, porous, broken,[and] often illegible’ (ibid.).

One of the specific ways in which Indian disability studies differs fromthat of the global North is that it must take seriously the reality that millionsof disabled people in India live in rural areas and are forced on a daily basis to‘negotiate with their near-inaccessible health, education and employmentsectors’ (p. 48). In addition to endemic poverty and rural isolation, religionremains important in the South and East Asian contexts. Causes of impair-ment may be viewed as a social or cosmic disorder, as a fact of life ormisfortune, as a curse or result of sorcery, or as a consequence of thebehavior of the father or mother. Where disability has been associatedwith ‘previous wrongdoing, having a person with a disability was believedto bring shame and guilt to the family’ (p. 40). In China, people withdisabilities historically occupied the lowest social status and were referredto as handicapped and useless as late as the 1980s. Mehrotra asserts thatother studies have shown that:

Hindus and Muslims both tend to believe that adults born withdisability are entitled to earn their living by begging [. . .] It is duty ofother members of society to support them by giving alms. [. . .]Should this justice not be performed by other citizens, the balance ofsociety would be disturbed as the result of violating the mutualresponsibility and religious duty of the community. (p. 41)


Throughout India, religious institutions ‘provided the poor with muchneeded support from the civil society’ (p. 42). With globalization,Mehrotra has found that, ‘most of the early erstwhile charitable medicalinstitutions have become commercialized, part of the burgeoning privatemedical sector and are catering only to the rich’ (ibid.), which onlyserves further to compromise the precarious position people with disabilitiesoccupy in both rural and urban India. Poverty, rural isolation and religionremain pervasive and influential factors in the lives of people with disabilitiesthroughout South and East Asia.

Kin networks are equally important. In the South Asian context, aperson—including a disabled person—is seen as part of the group; individu-alism is discouraged. Mehrotra argues that family is an important:

site in which disability is not only assigned meaning but alsomanaged in everyday life. Families do not exclusively espouse amedical or social model of disability, but instead see disabilityas extending to the kin unit and requiring different strategiesfor controlling and managing its meaning and consequences.(pp. 42–3)

Mehrotra cites Ingstad and Whyte, who note that familial responsibility andmanagement of disability often means ‘modifying expectations for the dis-abled individual and finding roles which that individual [can] fulfill and thuscontribute to the family’ (p. 43). The family economy, as well as localcommunities and cosmological beliefs are critical in understanding disabilityin most South and East Asian contexts, where disability is not limited merelyto individual bodies. Mehrotra uses the term ‘connected body-selves’ (ibid.)to think about the ways in which families live with disability and manage thestigma associated with impairment and disfigurement. ‘This concept,’ sheexplains:

first links the physicality of the body to the identity and experi-ence of personhood, and then specifies that the experience andmeaning of personhood is fused to a network of other body-selves.(ibid.)

While useful in thinking about family, kinship, and local communities, theidea of connected body-selves also has larger implications; it enables scholarsto link local lived experiences with global social and political developments.For example, it allows researchers to explore how disabled people’s actionsand claims to rights are not made in the public sphere as they might be inplaces that value a more liberal notion of citizenship, but rather within the


domestic sphere, giving rise to something Mehrotra calls ‘domestic citizen-ship’ (ibid.). Thinking about domestic citizenship, in turn:

opens an analytical space for examining how an individual’s agency,their possibilities and limitations are ‘linked to the nature of how they(disabled individuals) are positioned in (or excluded from) the do-mestic configuration’ of body-selves. (ibid.)

The concept of the ‘socio-centric self’ is a dominant, though not uncontestedway in which scholars in South and East Asia are thinking about disabledbodies and the lived experiences of disabled people. This idea offers apowerful counter to western/northern conceptualizations of disability.

Using ethnographic studies of disability in both rural/agrarian Haryanaand urban Delhi, Mehrotra explores the meanings and roles of citizenship inthe lives of people with disabilities, as well as their own ‘existential realities’(p. 28). Through her work, Mehrotra has come to develop an ‘embodimentmodel’ that incorporates a sophisticated understanding of ‘the complexinteraction of structure, culture and body’, which she argues is ‘crucial inunderstanding the associated practices and live in experiences of the dis-abled’ (p. 51). Rather than follow the global North discourse of the disabilityrights movement ‘about essentialized nature of their discrimination andsocial exclusion’ (ibid.), Mehrotra has instead focused on the lifeworlds ofpeople with disabilities and worked to understand their agency in a givenstructure and in different contexts. Remaining mindful of diversity, ‘in termsof nature of disabilities and their implications for the lives of [people withdisabilities] and their different experiences across caste, class, region, ruraland urban contexts in times of globalization’ (ibid.) is crucial for under-standing the complex social realities of disabled people, which, in the end,must form the foundation for any type of ‘theory building’ (ibid.). Mehrotraconcludes that despite sweeping changes due to modernization and global-ization, a ‘culture-centred, holistic approach’ to studying disability and dis-abled people is likely not only to ‘elucidate the importance of traditionalsupport mechanism’, but also to have broad implications for disability stu-dies, the disability rights movement and policy at the level of individual statesand internationally (p. 46).

In A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illnessin Contemporary Japan (CornellUP [2013]), anthropologist and professor ofEast Asian Studies, Karen Nakamura provides the type of thick descriptionand careful analysis called for by Mehrotra. Written in plain language andtold in a narrative style, accompanied by a DVD containing two documentaryvideos and filled with a host of pictures, this easily accessible and deeply


engaging work combines broad historical, social, and cultural context withintimate personal experiences and poignantly articulated vignettes to im-merse the reader in the lives of members of Bethel House, the professionalstaff who work with them and the residents of the town of Urakawa locatedon the island of Hokkaido, Japan. Nakamura describes Urakawa as a ‘tinyspeck on the southern edge of nowhere’ (p. 4). Yet this small community hastransformed the lives of its residents and touched many individuals livingwell outside its remote confines. Founded by a small group of ex-patients, asocial worker and a minister in a rundown (nearly abandoned) church in1984, Bethel House provides support, care and community to people livingwith what Nakamura refers to as ‘severe mental illnesses such as schizophre-nia’, enabling them to escape the oppressive confines of the long-term psy-chiatric ward of the Urakawa Red Cross Hospital (pp. 1–2).

From its humble beginnings, Bethel House has grown to become a majornon-profit. Over 150 members and their supporters live and work in andaround Bethel House, and every year it is visited by thousands of ‘psycho-tourists’ (Nakamura’s term) seeking out solace, camaraderie, and in somecases ‘cures’, as well as the annual Bethel Festival and the Hallucinations andDelusions Grand Prix. Although the Bethel community has changed signifi-cantly over its thirty-year history, members and their supporters continue tolive their lives based on its simple principles, which were initially derivedfrom Bethel House founding members’ (who were Japanese) own Christianfaith—Bethel House, which comes from the Old Testament, means ‘house ofGod’. The list of principles is long, but it is well worth noting: meeting is moreimportant than eating/we want a workplace where you can goof off without fear/move your lips, not your hands/we welcome prejudice and discrimination/from ‘audi-tory hallucinations’ to ‘Mr Voices’/trust in the power of the group/weakness binds ustogether/Bethel’s colors [its diversity] make sales go up!/we welcome the mixing ofpublic and private/when you come to Bethel, your illness comes out/let’s value ourlack of profits/don’t try too hard/ don’t try to fix your illness by yourself/just lettingit be is good enough/go from a ‘life of assent’ to a ‘life of descent’/reclaim yourproblems/you’re right on schedule (p. 107). Bethel members package and sellseaweed—something for which they have become moderately famous. Theyprovide other goods and services to the local community and many of themtravel throughout Japan lecturing on their experiences living with mentalillness. Bethel members and staff have published dozens of books. They sellT-shirts and produce cultural events. Initially born out of local and largelyisolated attempts to deinstitutionalize psychiatric patients in Japan, BethelHouse has grown to become quite more than just a small community on thesouthern shore of Hokkaido. It has gained the attention of the Japanese


disability rights movement, which has been growing since the 1990s and ithas also become an officially sanctioned non-profit, with an annual budget ofseveral million yen. Bethel House has become intimately linked with theJapanese state and its citizens’ popular imagination in unprecedented ways,which has made it difficult for some members to continue to live by itsfounding principles. Yet, all is not lost. As Nakamura notes, ‘in anthropo-logical terms’, Bethel has become much more than a clubhouse for psych-survivors (a western term that they most likely would not use); it hasbecome ‘a field of practices and a field of discourse and imagination’ thatis not only changing the lives of its members and staff, and the lives ofUrakawa’s other residents, it is also changing the ways in which the Japanesepeople think about mental illness and people with disabilities (p. 219).

The experience at Bethel, as well as other experiences throughout his-tory and in various locations across the globe, have shown that social atti-tudes toward disability can and do change, something that Lecturer inLiterary and Disability Studies, David Bolt has sought to address in hisedited volume, Changing Social Attitudes Toward Disability: Perspectives fromHistorical, Cultural, and Educational Studies (Routledge [2014]).Simultaneously prescriptive, descriptive and analytical, the collection ofessays contained within Changing Social Attitudes Toward Disability emergedout of the seminars that Bolt organized as the director of the Centre forCulture and Disability Studies at Liverpool Hope University, UK. Althoughthe book suffers from some conceptual, methodological and organizationalshortcomings, it contains several gems that will no doubt work to advancescholarship in critical disability studies. Perhaps most problematic, is theunderstanding of ‘changing social attitudes’ that both editor and authorsseem to use to frame their work. In both the introduction and many ofthe chapters, it is clear that the idea of ‘changing social attitudes’ is con-ceptualized strictly as an ‘improved’ and more ‘Western’, liberal, politicallycorrect way of understanding disability. This overly simplified Whiggish viewof change over time, which is rooted in the type of universalizing andessentializing understanding of disability lamented by Mehrotra and otherscholars of South and East Asia, belies the richly variegated experiences ofdisabled people both past and present, and further perpetuates the domin-ance of Western liberal understandings of disability and ‘the good life’. Theeffectiveness and usefulness of the book is also undermined by the conceptuallooseness of its three parts: history, culture and education. Only one of thechapters in the first section, ‘history’, can be considered an historical study.Two of the chapters in this same section are not histories at all, but rathercontemporary rhetorical and cultural analyses. Finally, it is not entirely clear


how the chapters, when read individually and as a whole, advance, or insome cases address the most rudimentary understandings of ‘changing socialattitudes’.

Despite these limitations, several of the authors in Changing SocialAttitudes Toward Disability make provocative and useful claims situatedwithin finely crafted engaging prose. In the book’s first chapter, ‘Evolutionand Human Uniqueness: Prehistory, Disability, and the UnexpectedAnthropology of Charles Darwin’, author David Doat argues that an, ‘ableistanthropology’ underlies scientific discourses, spreading an ‘incomplete visionof humanity’ that does not take into consideration ‘the universal facts ofvulnerability and disability’ (p. 15). By revisiting the work of CharlesDarwin, Doat challenges scholars of human evolution and humanity’s pre-history to engage meaningfully with the notion that developing ‘symbioticcare practices’ is ‘advantageous in human societies from a Darwinian evo-lutionary perspective’ (p. 22). In, ‘Killer Consumptive in the Wild West:The Posthumous Decline of Doc Holliday’, a richly textured cultural historyof the late nineteenth-century American outlaw, John Henry ‘Doc’ Holliday(1851–1887), historian Alex Tankard argues that ‘social attitudes towardtuberculosis and disability have changed almost beyond recognition sinceHolliday died in 1887’ (p. 35). Using historical newspaper accounts ofHolliday and numerous film portrayals, Tankard shows that the notoriouscriminal who was once seen as ‘delicate’, ‘scrupulously neat’, and evenappealing in some ways transformed over time in the cultural imaginationto a coughing, spitting, extremely emaciated, frail consumptive, which wasnot necessarily in line with the way his contemporaries viewed him. Tankardconcludes that future filmmakers (and I would add historians) should ‘notembrace a biomedical model of disability uncritically. Biomedical discoursesare not universal, timeless or objective; rather in presenting themselves assuch, they marginalise and invalidate more appropriate perspectives’ (p. 35).

In three of Changing Social Attitudes Toward Disability’s most interestingchapters, authors Alice Hall, Stella Bolaki and Pauline Eyre explore contem-porary narratives of disability in photojournalism, memoir and Europeanliterature, respectively. In ‘Disability and Photojournalism in the Age ofthe Image’, Hall explores the lives and work of two contemporary photo-journalists, Giles Duley and Joao Silva, ‘whose work focuses on capturingunrepresented stories about humanitarian issues and in sites of conflict’(p. 50). Throughout their careers, both photographers have used imagesto represent disability, and as life would have it, both photojournalistsbecame disabled within one year of each other: Silva in 2010 and Duleyin 2011. Drawing on disability studies and photography theory, Hall skillfully


interweaves an analysis of media coverage of the stories of Duley and Silvaimmediately following their injuries, which she argues reinforced ‘stereo-typical attitudes’ toward disability—namely the overcoming narrative—andtheir own work. She finds that in many ways and in contrast to the‘often reductive textual narratives’ produced by popular media, many ofthe photographs—both of and by—Duley and Silva following their injuriesoffer ‘a more nuanced exploration of their own stories and experiences ofpeople injured during warfare’ (p. 54). Mindful of the material inequitiesthat shaped their experience with injury, rehabilitation, and ‘re-entry’ intothe world of photojournalism and the social and cultural capital Duley andSilva carry with them into sites of humanitarian crisis and military conflict,Hall argues in a subtle and nuanced yet forceful way that both photographersuse narrative text, images, and other modern media such as blogs, to presenta story about disability that is neither static nor passive, but ‘remains pro-visional and evolving’, dynamic and interactive (ibid.). In her essay, ‘TheCultural Work of Disability and Illness Memoirs: Schizophrenia asCollaborative Life Narrative’, Bolaki uses a single memoir, Henry’s Demons:Living with Schizophrenia, A Father and Son’s Story (2011), co-written by Patrickand Henry Cockburn, to explore important questions raised by disabilitystudies scholars; what sort of knowledges are articulated in illness narratives, andwhat is it about the writing and reading of memoir that is potentially transformative?Additionally, what sort of ethics emerges out of writing and reading such narratives?Written in alternating first-person chapters each authored by father and son,Henry’s Demons demonstrates not only the importance of memoir as a genre,but also the lived experiences of people with disabilities more generally inaddressing the possibilities and challenges in an era in which the voices of‘service users’ and ‘survivors’ are increasingly assuming a central role inchanging social attitudes toward disability. Bolaki concludes that althoughschizophrenia may appear static because ‘it is connected to a history of havingbeen diagnosed with the condition’ (p. 97), (e.g. Davis) it is not, becausewhat one experiences changes over time. ‘Approaching our mental andemotional state as malleable and open to change,’ Bolaki argues, forces usto give up the idea of the ‘stable schizophrenic easy to incarcerate, or easy tocelebrate as the occasion requires’ (ibid.).5 Instead, we see Henry, whomuch like the members at Bethel House in Japan, continues to enjoy hisposition as a narrator and his place in the public sphere, while living withschizophrenia.

In her chapter, ‘Impaired or Empowered? Mapping Disability ontoEuropean Literature’, Pauline Eyre rightly asserts that the ‘predominantlyAnglophone world’ of disability studies has been ‘impaired by a lack of


engagement with the literature and culture of Europe where English is notthe first language’ (p. 99), and sets about correcting this omission with aninnovative analysis of a novel written in German by a Czech writer, LibuseMonikova’s, Pavane for a Dead Infanta (Deutscher Taschenbuch Verlag GmbH[1988]). Eyre’s argument is at once elegant and powerful. According to Eyre,Monikova’s ‘supreme achievement’ is to get nondisabled readers to identifywith the disabled character in the book precisely because their encounterwith disability is ‘temporary and nonconfrontational’ (p. 100). Eyre con-cludes that in this case, ‘Neither pity nor sympathy is called for; there is noopportunity to leonise the heroic disabled person, no need to fall back on thenotion of disabled characters as villainous’ (ibid.). In restructuring the en-counter with disability in this way, the novel ‘does something radical: itrepresents the phenomenology of living as a disabled person without offeringthe reader a chance to render disability as Other’ (ibid.). In the end, Eyreargues that the novel makes the case for a ‘flexibly normal subject’, who is‘accepted into the normal community with her membership contingent onboth social conformity and on the wearing of the visible badge of hermarginable status [in this case a wheelchair]’ (p. 105). Through this contin-gent and clearly marked status, the disabled character is ‘contracted tomonitor her own behaviour according to rules that both empower her andrender her responsible’ (ibid.). Unlike Lennard J. Davis, Eyre asserts that,‘disability is not a category to be understood in opposition to normality’ (p.106), but rather as part of the normal. For Eyre, the chief accomplishmentof the novel is its ‘problemitization’ of the boundaries between normal anddisabled. Monikova’s story:

demonstrates that to be disabled is not to live as a fixed subject:disabled subjectivity is revealed as an open-ended set of potentialitieswere the meaning of disability varies moment by moment. (p. 106)

The author’s representation of disability, ‘offers an invigorating examinationof disabled experience, exposing the normalized disability experienced by somany disabled people who live as subjects and yet are gazed at as objects’(p. 107). Through its exploration of ‘temporary disability’ the novel providesa powerful example of how literary representation shapes the meaningsattached to bodies.

A critical analysis of cultural representations of disability, which has beenso central to disability studies in North America, is the main theme aroundwhich Branding and Designing Disability: Reconceptualising Disability Studies(Routledge [2014]) is built. Using evidence from the United States, profes-sors of interdisciplinary disability studies at the University of Maine,


Elizabeth DePoy and Stephen French Gilson employ a broad approach to thestudy of the dominant culture of disability as a means of reconstructing thefoundations of Western/Northern disability studies. Wedding marketingstrategies with art, science, and philosophy, they attempt to expand thenotion of ‘design’ and ‘branding’ to include ‘a careful examination of de-signing humans as category members within mythic divisions that areblockaded with vague and movable boundaries and contain unquestionedinstitutionalized beliefs’. They argue that despite the existence of theword ‘disability’ and the perception of disability as a ‘real and stableentity’, it is largely an ‘artifact’ of a designing and branding process char-acterized by ‘current relativistic motifs and labels’ that are ‘no longer usefulin the twenty-first-century global market economic context’ (p. 3).Additionally, they broaden the concept of ‘design’ beyond human bodiesto include such things as policy and service systems (p. 18). They similarlyexpand the idea of branding to include the ‘branding’ of place and space,such as a ‘green’ space or a space for the elderly, or the disabled. ‘Branding,’they argue, ‘is not restricted to a logo designed for a product, but ratheroccurs in the meaning made by signifiers’ (p. 95). This process of designingdisability (creating disability categories) and branding disability (assigningmeaning), which is imbricated with other social, economic, and politicalforces works to create what DePoy and Gilson call a ‘disability park’—anideological, political, social and often physical space that disabled peopleoccupy, which is characterized by stigma, objectification and exclusion (des-pite or perhaps because of neoliberal attempts at inclusion). Once we adoptthis notion of designing and branding disability and the creation of a disabilitypark, things such as clearly demarcated seating areas, paratransit systems, thesignage that many of us in the ‘developed’ world encounter daily, and evensuch things as ‘adaptive’ equipment or products and targeted legislativemeasures or international declarations can be viewed as part of larger ableistsystems and structures that perpetuate disability oppression. When viewedfrom this critical standpoint, it becomes clear that we must ‘undesign’—dismantle or deconstruct—both ‘disability’ and ableism with the ultimategoal of redesigning bodily difference as a ‘given element of humanness’(p. 9).

While some readers will no doubt take issue with DePoy and Gilson’s callto move away from a critically informed identity politics toward the creationof a dismodern utopia in which difference and interdependence are norma-tive and ‘disability’ does not exist, Branding and Designing Disability never-theless offers innovative and provocative ways of thinking about both ableismand disablism that will appeal to newcomers to disability studies. The book’s


fourteen chapters are divided into easily digestible short subsections thattouch upon many of the most commonly referenced topics in disabilitystudies, as well as areas that are more recently emerging within the field.The book focuses on five main themes: language, knowledge production,normal–not normal binary, material and visual culture and humanness.Within those broad thematic areas, DePoy and Gilson discuss everythingfrom the bell curve, autism, sadness and depression, medicalization, theDiagnostic and Statistical Manual of Mental Disorders (DSM) and PostTraumatic Stress Disorder (PTSD), to various legislative measures, thebuilt environment and ‘universal’ design. The straightforward and oftendidactic writing style, complete with examples from their own travels andteaching experiences make this book a useful tool in guiding newcomers todisability studies through some of the field’s most important topics anddebates. The idea of the ‘disability park’ is an especially powerful metaphorthat allows readers to visualize rather abstract and at times complicatednotions of ableism.

For all of its strengths, Branding and Designing Disability raises questionsand concerns that extend beyond—and in some ways are deeply embeddedwithin—the authors’ dismissal of a critically informed identity politics.Although DePoy and Gilson’s expansive use of ‘design’, ‘branding’ and ‘re-design’, as well as their creation of new terms such as ‘undesign’ offerreaders a fun and visually stimulating way of thinking about ableism thatmay prove revelatory in some cases, it is unclear throughout the text howthis shift in language is anything more than just that, a shift in the words weuse to talk about familiar concepts, debates and subject positions. The se-mantic shift driving the analysis in Branding and Designing Disability seems tooffer little in the way of new insights into what, in many ways, has becomethe canon of Western, global North disability studies. Perhaps more prob-lematic is their almost complete denial of the role of disabled people them-selves in designing and branding disability. For example, in their discussion ofnormalcy and the bell curve, DePoy and Gilson engage in a brief discussionof PTSD and its emergence in 1980 and they write the following: ‘Changingthe name brand [of mental and emotional suffering] to denote pathology[PTSD] swelled and ripened the market segment for picking by the medicaland pharmaceutical industries’ (p. 40). The use of passive voice in thissentence, which is indicative of arguments elsewhere in the book, negatesthe rich, complex and varied lived experiences of veterans who lobbied forthe creation of PTSD as a category in the DSM and of the daily negotiationsof people living with that label once it was created. Moreover, setting up(potentially) disabled people as a ‘market segment’ who were ‘swelled and


ripened . . . for picking by the medical and pharmaceutical industries’ doeslittle more than perpetuate the notion of the docile and passive disabledbody-as-object in the cultural imaginary, a position that many of the authorscited in this essay go to great lengths to refute.

The potentially perilous implications of DePoy and Gilson’s argumentbecome more apparent when one examines the ways in which they deploytheir concepts of ‘undesign’ and ‘redesign’. Some of what DePoy and Gilsonargue is quite revealing. Take for example their assertion that a distinctionneed not be made between ‘park and non-park things and their paymentsources’ (p. 237). There is absolutely no reason why an ‘adaptive’ broomand dustpan should be marketed through a medical supply catalog (or web-site) at exorbitant prices, which are assumed to be covered by medicalinsurance. Undesigning disability as medicalized defect and redesigning itas human difference would enable the person in need of a broom and dustpanto browse through multiple designs and purchase them from multiple loca-tions that offer a range of competitive prices. At the level of brooms, dust-pans, mail order catalogues and websites this argument seems logical,reasonable and empowering; yet when we explore the larger implicationsof DePoy and Gilson’s argument, problems arise. For DePoy and Gilson,undesigning and redesigning may ‘very well start with dismantling the myththat disability as a category is useful, comfortable, that its members, howeverthey are recruited, should even be identified for branding’ (p. 230). Hereagain, we see disabled people as docile passive objects waiting to be identi-fied, recruited and branded. Even more troubling in this statement is thenotion that disability’s usefulness as a category is nothing more than ‘myth’.For many disabled people, especially disability rights activists, an identifica-tion with disability and its history forms a critically important (though nottotalizing) part of their identity that can provide them with a life-sustainingsense of comfort and community, not to mention moral outrage and the willto act against a dehumanizing ableist society.

DePoy and Gilson’s troubling disregard for disability as a politicizedidentity and the lived experiences of disabled people becomes increasinglyevident in their discussion of targeted legislative initiatives, social policiesand international declarations that they argue keep disability groups intact atleast conceptually. Take for example the following quote: ‘eligibles [fordisability benefits] join the ranks of those who are labeled as disability cat-egory members with their lives and choices designed by others to obtain andmaintain benefits’ (p. 114). Here the unknown, unnamed and faceless ‘eli-gibles’ are having their lives and choices ‘designed by others’ in order toobtain and maintain benefits. The rich texture of disabled people’s lives and


their own agency are completely negated in the name of liberal politicalcorrectness. While it is true that a certain level of ‘undesign is a prerequisitefor the improvement of environments, products, policies and services andthus the broader scope of human dignity’, disability studies scholars shouldnot be so quick to give up disability, either as a politicized identity or as asubaltern subject position (p. 223).

Through a well-grounded exploration of the spaces and places of exclu-sion, co-editors Karen Soldatic, Hannah Morgan and Alan Roulstone providea compelling alternative to the dismodern utopia advocated by DePoy andGilson. Together, Soldatic, who is an ‘international researcher’ in disabilitypolicy studies at the University of New South Wales, Sydney, HannahMorgan, a lecturer in Disability Studies in the Department of Sociologyand a member of the Centre for Disability Research at LancasterUniversity, UK, and Alan Roulstone, Professor of Disability Studies at theUniversity of Leeds, UK have put together a provocative collection of essaysthat sit at the intersection of geography, sociology, and policy studies.Disability, Spaces and Places of Policy Exclusion (Routledge [2014]) consists oftwo parts and ten chapters. The five chapters in part one focus on concep-tualizing disability spaces and places in settings that range from modernIreland, the UK and Australia to Guatemala. The five chapters in part twoexplore the moments of social-spatial exclusion experienced by disabledpeople in England, Scotland, British Columbia, Canada and the UnitedStates. Taken together, the chapters aim to combine critical conceptualanalysis and empirical insights to explore current policy and legal regimeswith the ultimate goal of re-/mapping, re-/framing and re-/shaping ‘diver-gent spatial relations and realities for disabled people’ (p. 2). Unlike DePoyand Gilson, who want to see disability fade into an undifferentiated dismo-dern human-ness, Rob Imrie, author of ‘Space, Place and Policy Regimes:The Changing Contours of Disability and Citizenship’, the first chapter in thebook, argues that the:

socio-spatial marginality of particular groups, such as disabled people,needs to be described, documented and politicized as part of the rightsof citizens to exercise autonomy, and to be empowered not only toimagine the possibilities of alternative, counter-mainstream, spatial-ities, but to enact them by being able to access, and influence, themeans by which spatial relations are conceived, conceptualized andtranslated into place-based experiences. (pp. 26–7)

In this collection of essays, the spatial is not confined to the material andstructural alone, but expanded to include the diverse ways in which the


‘emplaced body’ and ‘spatial relations’ are constructed symbolically, cultur-ally and materially (p. 2).

For the authors in the book, space, in all of its manifestations, is acontested terrain. Whether it is housing, transport and public space in theUK, or the legal and material spaces within which the sexual citizenship ofpeople with learning difficulties gets negotiated in Ireland and England, spaceis always something that is in flux. The almost daily negotiations made bydisabled people, their families, and allies exact a heavy physical and emo-tional toll. In chapter six: ‘Part of the problem or part of the solution? Howfar do ‘‘reasonable adjustments’’ guarantee ‘‘inclusive access for disabledcustomers’’?’ Donna Reeve focuses on the ways in which the experienceof using reasonable adjustments affects how disabled people feel about them-selves. Drawing on empirical data, she shows how poorly designed andimplemented reasonable adjustments contribute to increased levels ofpsycho-emotional distress. She calls this ‘psycho-emotional disablism’ andargues that often, disabled people ‘do not experience the reality’ of publicspaces as somewhere they belong, largely because ‘service providers arelagging far behind in their awareness of what [reasonable adjustments]means in practice’ (pp. 99–100). The result is that: ‘When reasonable ad-justments are made, they can be humiliating to use, enforcing spatial apart-heid and serving as reminders of difference rather than inclusion’ (p. 111).As a remedy to this, and other oppressions, the author of the first chapterin the book, Rob Imrie, asserts that the social relations of disablementshould be:

challenged by the development of a body politics that develops thediscourse that everyone, irrespective of corporal form and per-formance, has the rights to inhabit, or to be emplaced, in wayswhereby spaces are facilitative of a person’s autonomy or the intrinsicvalue of the self. (p. 14)

While facilitating one’s personal autonomy and the intrinsic value of one’s‘self’ may be seen as necessary and empowering in certain settings, otherscholarship emerging out of disability studies, including a chapter inDisability, Spaces and Places of Policy Exclusion shows that this may not be themost appropriate or even desirable goal. In ‘Shaping Local Ethical Spaces ofCare and Caring for People with Learning Disabilities’, Lecturer inHuman Geography, Edward Hall, shows that in Scotland a new model andlandscape of ‘care’ has emerged in the wake of neoliberal austerity: ‘carebroadly conceptualized, co-produced, holistic, locally based and centred on


an ethics of care based on mutuality and trust’ (p. 130). Hall goes on toargue that:

This collective and negotiated provision of care is in stark contrastto the personalized and commodified model of social care dominatein England (and in many other neoliberal welfare states), whereindividuals are given ‘personal budgets’ to purchase care in a socialcare marketplace . . . budgets which are now being severely cut.(ibid.)

Hall asserts that the personalized budgets and commodified care advocated inEngland and elsewhere has gained little purchase in Scotland. Disabledpeople, their families, and other allies have been working in Scotland tocreate a form of care that is both broad and diverse and rooted in a range ofspaces and social relationships. Hall refers to this as a form of ‘progressivelocalism’. It is a form of care that is ‘impossible to neatly define and com-modify’ (p. 135). Much like the case emerging out of India and other parts ofthe majority world, the changing social-spatial relationships of care inScotland offer disability studies scholars an opportunity to shift the discourseon care away from individualism, choice, control, rights and citizenshiptoward a valuing of lives centred on social connections rooted in localspaces. Hall’s analysis reveals the limitations of ‘personalized’ care and sup-port for ‘independent’ living as the benchmarks for the achievement of a‘satisfying and sustainable ‘‘good life’’’ (p. 136).

As Hall and others have shown, place matters in myriad ways whentheorizing disability. The final chapter I will review from Disability, Spacesand Places of Policy Exclusion, Jon Warren and Kayleigh Garthwaite’s‘Biographies of Place: Challenging Official Spatial Constructions ofSickness and Disability’, asks important questions that have become stapleconsiderations in other disciplines but have not yet gained a secure footholdin disability studies, namely: Why do some localities have a much higher incidenceof impairment and chronic illness than others? Why do social policy initiatives andhealth interventions work in some areas and make little impact elsewhere? In theirchapter, Warren and Garthwaite argue that a critical disability studies per-spective is required in order to challenge ‘official spatial constructions’ ofsickness and disability, because spaces and places, as much as anything elsepossess ‘specific identities with intersections between environment, historyand culture’, something they call a ‘biography of place’ (p. 115). Warren andGarthwaite construct a case study of the former mining district of Easingtonin County Durham, North East England, where deindustrialization has lim-ited employment opportunities for male workers, and neoliberal austerity


measures have resulted in deep cuts in the Disability Living Allowance(DLA) and the Personal Independence Payment (PIP), as well as othersubsidies. Any attempt to understand the effects of these changes or toimplement new policy strategies must take into account the gendered historyof Easington as a mining district that has, since the upheavals caused by thedeparture of the mining industry in the 1980s and 1990s, exhibited dispro-portionately high rates of disability and sickness benefit claims. Warren andGarthwaite conclude that: ‘In order to fully comprehend the health of thosewho live in a place, we need to understand that place; not only the history ofthe narratives of work, locality, culture and being’ (p. 119). Taken together,the chapters included in Disability, Spaces and Places of Policy Exclusion offercompelling evidence of the need to bring together multidisciplinary workthat specifically addresses and critically analyses the uniquely and locallysituated nature of global disability experiences.

Are we witnessing the end of normal? As Davis’ own work has shown,norms are neither absolute nor finite, nor do they exist outside the socialrelations that produce them. (See for example: Lennard J. Davis, EnforcingNormalcy: Disability, Deafness, and the Body (Verso [1995]).) In this sense,normal has no end, but rather than let the concept float off into meaninglessoblivion, scholars have been working to redefine the term. In her work,Pauline Eyre has called for a ‘flexibly normal subject’, adaptable, malleable,but always responsible; able to conform to normative notions of appearanceand behaviour. Yet always marked and made knowable by visible signifiers ofacceptable difference. Goodley modifies this still rather capacious under-standing of normality, at least for disabled people and disability studiesscholars in the West or global North, with his notion of the neoliberal-ableist‘hyper-normal’ subject, who is flexibly (and ultimately maximally) employ-able (p. 21). As these and other definitions of ‘normal’ indicate, it, like‘disability’, is relational and simultaneously rooted in the materiality of livedexperiences and the discursive or ideological systems of meaning making thatrender those experiences intelligible. Normal networks of support inScotland are increasingly differentiated from those in England, Canada, orthe United States. The normal lifeworlds of disabled women in India, alwaysdeeply affected by caste, class, kin and gender, may look nothing like thelives of disabled former mine workers making claims for disability benefits inthe district of Easington, County Durham, North East England. The normallife experience of a late nineteenth-century consumptive like John Henry‘Doc’ Holliday (1851–1887) may bear little resemblance to the twentieth-century tuberculosis patient. Yet there are certain commonalities that persistacross space and time. One thing that is present in all of this social, cultural


and material variation is the disabled body. Even it, however, is not constantor without culturally ascribed (and inscribed) meanings. When taken as awhole, the works reviewed in this essay point toward the need for disabilitystudies scholars to move beyond strict ‘social model’ and ‘cultural relativist’understandings of disability and take seriously and think critically about thebodies we inhabit, and the social spaces within which we dwell.6 Drawing onthe work of the French philosopher Georges Canguilhem, I would argue thatit is normal for human bodies to fall ill, or become disabled or disfigured insome way; pain is normal; vulnerability and dependence are normal; suffer-ing is normal; healing and recovery are also normal; even a desire for cure isnormal. Disability studies scholars, especially those in North America, couldlearn a lot from the folks living and working at Bethel House. In many ways,the multidisciplinary work emerging out of global disability studies isfinding creative and innovative ways to bring bodies (with all of their inher-ent and socially layered complexities) into the conversation; to analysecommonalities that cut across locations, and gender, racial and class divides,while also accounting for differences; and finally to think simultaneouslyabout local specificities and larger regional, national and inter- or supra-national systems and structures. In short, much of the new work in disabilitystudies engages with the corporeal, the structural and the discursive orrepresentational. The proliferation of this work is a clear indication of therobustness of the field of disability studies at the outset of the twenty-firstcentury.

Notes

1. Although important and innovative work has emerged out of North American

disability studies over the last two years, this review essay focuses on work that

takes a more global and multidisciplinary approach to studying disability.

Important recent publications not reviewed in this article include: Liat Ben-

Moshe, Chris Chapman and Allison Carey, eds, Disability Incarcerated (Palgrave

[2014]); Dea H. Boster, African American Slavery and Disability: Bodies, Property,

and Power in the Antebellum South, 1800–1860 (Routledge [2013]); Julie

Passanante Elman, Chronic Youth: Disability, Sexuality, and US Media Cultures of

Rehabilitation (New YorkUP [2014]); Jordynn Jack, Autism and Gender: From

Refrigerator Mothers to Computer Geeks (UIllinoisP [2014]); Alison Kafer,

Feminist, Queer, Crip (IndianaUP [2013]); Ravi Malhotra and Morgan Rowe,

Exploring Disability Identity and Disability Rights Through Narratives: Finding a

Voice of Their Own (Routledge [2014]); Julie Avril Minich, Accessible

Citizenships: Disability, Nation, and the Cultural Politics of Greater Mexico


(TempleUP [2014]); Ellen Jean Samuels, Fantasies of Identification: Disability,

Gender, Race (New YorkUP [2014]). Books that extend their focus outside

North America, but could not be included in this review essay include:

Sebastian Barsch, Anne Klein and Pieter Verstraete, The Imperfect Historian:

Disability Histories in Europe (Peter Lang [2013]); Susan Burch and Michael

Rembis, Disability Histories (UIllinoisP [2014]); Michael Carl Gill and Cathy

J. Schlund-Vials, Disability, Human Rights and the Limits of Humanitarianism

(Ashgate [2014]); David R. Mitchell and Valerie Karr, Crises, Conflict and

Disability: Ensuring Equality (Routledge [2014]); Alan Roulstone and Hannah

Mason-Bish, Disability, Hate Crime and Violence (Routledge [2013]); Tom

Shakespeare, Disability Rights and Wrongs Revisited (Routledge [2014]).

2. World Health Organization, World Report on Disability 2011 (WHO Press).

3. Tobin Siebers, Disability Theory (UMichiganP [2008]). For a discussion of the

slogan ‘nothing about us, without us’, see: James I. Charlton, Nothing About Us

Without Us Disability Oppression and Empowerment (UCaliforniaP [1998]).

4. Students and scholars new to disability studies would benefit from reading, Dan

Goodley, Disability Studies: An Interdisciplinary Introduction (SAGE [2011]), before

reading, Dis/Ability Studies: Theorising Disablism and Ableism.

5. Bolaki quoting Prendergast. In the same book, Catherine Prendergast revises

her own claims about the ‘stable schizophrenic’. See Catherine Prendergast,

‘Mental Disability and Rhetorcity Retold: The Memoir on Drugs’, in David

Bolt, Changing Social Attitudes Toward Disability: Perspectives from Historical,

Cultural, and Educational Studies (Routledge [2014]) pp. 60–8.

6. For a detailed discussion of this argument see: Tom Shakespeare, Disability

Rights and Wrongs Revisited (Routledge [2014]).

Books Reviewed

Bolt, David. Changing Social Attitudes Toward Disability: Perspectives from Historical,

Cultural, and Educational Studies. Routledge. [2014] pp. 190. hb $102.36 ISBN 9

7804 1573 2499.

Davis, Lennard J. The End of Normal: Identity in a Biocultural Era. UMichiganP.

[2013] pp. 168. pb $28.45 ISBN 9 7804 7205 2028.

DePoy, Elizabeth, and Stephen French Gilson. Branding and Designing Disability:

Reconceptualising Disability Studies. Routledge. [2014] pp. 304. $140.63 ISBN 9

7804 1563 5387.

Goodley, Dan. Dis/Ability Studies: Theorising Disablism and Ableism. Routledge.

[2014] pp. 224. pb $44.49 ISBN 9 7804 1563 5387.


Mehrotra, Nilika. Disability, Gender and State Policy: Exploring Margins. Rawat

Publications. [2013] pp. 304. hb $55 ISBN 9 7881 3160 5875.

Nakamura, Karen. A Disability of the Soul: An Ethnography of Schizophrenia and

Mental Illness in Contemporary Japan. CornellUP. [2013] pp. 264. pb $20.82 ISBN

9 7808 0147 8611.

Soldatic, Karen, Hannah Morgan, and Alan Roulstone. Disability, Spaces and

Places of Policy Exclusion. Routledge. [2014] pp. 198. $129.95 ISBN 9 7804 1585

4801.


“Disability Studies,” The Year's Work in Critical and Cultural Theory 23 (Oxford University Press, 2015) doi:10.1093/ywcct/mbv007Z.

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