Review Essay: Anthropological Explorations of Disability

Michele Ilana Friedner, Sensory Futures: Deafness and Cochlear Implant Infrastructures in India, Minneapolis: University of Minnesota Press, 2022.

Erin Raffety, Families We Need: Disability, Abandonment, and Foster Care's Resistance in Contemporary China, New Brunswick: Rutgers University Press, 2022.

Arseli Dokumacı, Activist Affordances: How Disabled People Improvise More Habitable Worlds, Durham: Duke University Press, 2023.

Over the last twenty years, anthropological interest in the socio-cultural and embodied experiences of people with disability in various contexts and geographical areas has grown exponentially (Brocco 2024; Ginsburg and Rapp 2020; Ingstad and Whyte 2007; Staples and Mehrotra 2016). Several scholars have tried to expose narratives and practices shaping ideas of bodily non-normativity, collecting a wealth of ethnographic data to critique paradigms predominantly centred on the Global North and around biomedical understandings of various forms of bodily alterity including deafness (Friedner and Kunsters 2020) and intellectual/cognitive disability (McKearney and Zoanni 2023).

In contrast to the idea of ‘disability as a fixed category’ and in line with analysis in critical disability studies and crip theory (Chen et al. 2023), such scholars have outlined the relational nature of definitions of bodily non-normativity (Ginsburg and Rapp 2020) and aimed to describe shared situational assumptions about normativity and able-bodiedness in various societies (Friedner and Weingarten 2019). In so doing, they have explored relevant topics including, to name just a few, disability rights and politics (Açiksöz 2019), community formation and belonging (Nakamura 2013), kinship and relatedness (Das and Addlakha 2007; Ginsburg and Rapp 2024), feminist and gender issues (Chen et al. 2023), post- and decolonial praxes (Grech and Soldatic 2016), work and social entrepreneurship (Mauksch 2021), biopolitics and structural violence (Ma 2020; Ralph 2014), and the significance of techno-scientific infrastructures and digital realms (Boellstorff 2015; Whyte and Muyinda 2022).

This review, therefore, focuses on three recent interventions that expand the ethnographic scrutiny of disability and stretch its analytical potentials. Erin Rafferty's Families We Need addresses the redefinition of kinship grammars through the temporary production of alternative family arrangements. Arseli Dokumacı’s Activist Affordances primarily explores the experiential ecologies of people with non-normative bodies in predominantly ableist worlds, while Michele Friedner's Sensory Futures examines the role of technological infrastructures in foregrounding new state-driven neoliberal atmospheres of normality.

The first book, Activist Affordances, convincingly investigates practices, ideas and embodied experiences of individuals with rheumatoid arthritis (RA) in their efforts to build more accessible and liveable worlds. Ethnographically spanning the political terrains of Canada and Turkey, Arseli Dokumacı (who herself has RA) defines ‘activist affordances’ as the set of multiple experiences and sites arising from modes of ecological complementarities between bodies and their material environments through which disabled people transform a given space into a habitable world (6). Such networks of support are the primary products of and reactions to the ‘shrinkages’ (24) of the able-bodied world and its ‘habitus of ableism’ (20–21). These two terms thus introduce a novel vocabulary that describes nuanced articulations of affordances by people with non-normative bodies, which also depend on the multiple ways their corporealities may materially change due to the unequal distribution of wealth in society and the biological passage of time.

Dokumacı’s fascinating volume is organised into two sections comprising ten chapters and an introduction. In Chapter 1, the author traces the genealogy of the theoretical concept of affordance from the works by James J. Gibson on the ecological approach to perception and highlights the epistemological significance of disability in complicating this theoretical framework. A number of ethnographic ‘situations’ (46–50) illustrate how certain affordances may fail to transform worlds and environments into more liveable spaces and instead act as ‘constraints’ due to the shifting nature of bodily impairments and disablements. By presenting ethnographic accounts of chronic pains and other difficulties, Chapter 2 points out the ableism of ‘affordance theory’ (59) and illustrates how temporal and spatial forms of shrinkages (69) coexist with imaginative and material forms of affordances. Along this line of argumentation, Chapter 3 discusses the disconnect between the bodies of Dokumacı’s research participants and their environments. By foregrounding the concept of ‘habitus of ableism’, the author goes beyond the material determinism present in the social model of disability, offering an ethnographic description attuned to the ways the environment and its spaces for actions can ‘shrink’ for disabled people, even as ‘accessibility’ is formally guaranteed (76). By connecting disability with ecological interpretations of shrinkage, Chapter 4 foregrounds outcomes of ableism—characterised by diminishment, denial, and marginalisation—that affect people with non-normative bodies and are at the origin of a planetary crisis.

The second half of the volume titled ‘performance’ elaborates on Dokumacı’s theory. Chapter 5 shows how actions by her research participants generate choreographed ‘aesthetic performances of world-building’ (104) towards the construction of more habitable spaces. By introducing a diverse inventory of activist affordances that she and her interlocutors make use of on a daily basis, Chapters 6 and 7 provide a visual and dialogic archive of practices and account for how disabled individuals adapt their environment, manipulate daily objects and improvise actions within their constrained realities in order to ‘make and re-make’ (201) their social realities in the long run. Chapter 8 elicits how caregivers, family members and friends, seen as ‘people as affordances’, assist and facilitate—or impede—the lives of the interlocutors through their support and care. Here, forms of ‘mutual engagements’ (224) between social actors and the consequent production of ‘infrastructure of affordances’ among them (217) are the articulations through which the author chronicles these entanglements. Chapter 9 further elaborates on these themes by ethnographically introducing the concept of ‘disability repertoires’ (228), defined as collections of everyday survival techniques that can be employed to navigate and transform their surroundings. The concluding Chapter 10 of this innovative volume underscores the critical need to create and promote activist affordances, emphasising its ethical importance not only for people with non-normative bodies but for all beings living in an increasingly constrained and fragile world.

Similar issues about the complex ways through which disabled people have lived in ableist worlds vis-à-vis infrastructures, shrinkages and constraints constitute the topics of the second volume reviewed here, but these problems are analysed from a different perspective. Michele Ilana Friedner's superb Sensory Futures draws on ethnographic analysis of how the introduction and promotion of cochlear implant technology by the state and international companies have reshaped experiences and the sensory perception of d/Deaf individuals, including implant recipients, in India. More precisely, this research urges us to attend the cultural and social consequences of cochlear implants, as well as their neoliberal and governmental transformation into ‘sensory infrastructures’ that impose normative sensory perceptions. The entire book offers a nuanced critique of the constructs of normativity and normality, particularly how biomedical and technological interventions aimed at ‘normalising’ deafness and producing speaking and hearing adults affect the sensory engagements of d/Deaf children with their environment. The concept of ‘becoming-normal’ thus serves as a critical lens to focus on how a diverse range of research participants—ranging from doctors and audiologists to parents (mainly mothers), politicians and investors to the author, who herself uses bilateral cochlear implants—imagine and make sense of the outcomes of these auditory technologies in normalising and changing the sensory perceptions of d/Deaf people.

Including five chapters, an introduction and conclusion, Sensory Futures uncovers the types of social interactions and experiences that technologies for d/Deaf people facilitate or hinder. By exploring government policies, Chapter 1 scrutinises the promotional strategies of cochlear implant surgeries and national programmes that engender optimism about technological solutions reinforcing ableist perspectives, although the cochlear implant technology available for Indian children are considered obsolete in Global North settings. Through these initiatives, the state, conceived of by Friedner as ‘sensory state’ (61), redefines d/Deaf children as beneficiaries of a rights-based approach to achieving normalcy and embeds itself within their corporeal existences. Delving deeper into this issue, Chapter 2 ventures into the genealogies and historical context of Auditory Verbal Therapy (AVT), a series of rehabilitative practices conceived in North America. Through an examination of literature and personal accounts from the United States to India and Australia, the author articulates how AVT practitioners have aspired, based on hierarchal and ableist forms of knowledge, to cultivate ‘normal five-sensed children’ and promote a unilateral mode of socialisation. Amidst this convoluted scenario, Friedner in Chapter 3 attends to the ways family and, especially, mothers confront emotional, social, and economic obstacles as they encourage such therapeutic approach and steer their children's change into speaking and listening subjects through spoken interactions and shared experiences. Therefore, Chapter 4 explores ‘maintenance problems’ of cochlear implants by government programmes (128), which encompass not only material concerns (like inadequate support for device maintenance and battery checks) but also pertain to the societal expectation for d/Deaf children and their families to take care of their hearing and speaking personae. As chronicled by Friedner, many Indian families cannot afford the maintenance cost of these devices, though these are seen as material and tangible forms of care towards their children. Interrogating how the quest for normalcy facilitates certain communicative and sensory practices while simultaneously constraining others, Friedner introduces in Chapter 5 the interrelated concepts of ‘passing as normal’ and ‘becoming-normal’, which scrutinise how societal, political, and economic expectations demand certain outcomes and constraints for d/Deaf children. Thus, normality becomes synonymous with normativity and constriction, and her d/Deaf interlocutors are actually compelled to adhere to certain standards to ‘pass’ (169). The conclusion envisages a ‘deaf futurism’ and advocates for reimagining ideas of the normal to include a broader spectrum of stimuli and signals that transcend traditional auditory and verbal capacities by involving sensory infrastructures that promote multiple ways to attune to and inhabit the world.

Shedding light on the entanglements between forms of relatedness and disability, Erin Rafferty's Families We Need offers an intimate and profound exploration of the intersection between children with disability and foster-care mothers in China. The volume provides a poignant account of this reality through the analysis of the emotional and practical implications of foster care and the role of the state in regulating norms around familial support. Although ‘temporary, makeshift and presumably replaceable’ (4), these unstable kin relationships provide readers with germane information in their ways of being disruptive to traditional family ideologies, the Chinese state and Intercountry Adoption (ICA). In so doing, Raffety pleasingly points out that foster families with children with disability could be considered as ‘families we need’ (26). On the one hand, they expand ‘white, heteronormative, and able-bodied families’; on the other hand, they expose the category of need in the construction of family and reformulate hegemonies of care.

Throughout the volume's six chapters, conclusion and introduction, the author presents foster families as pivotal to the inclusion of disabled children in a microcosmic view of the broader state mechanisms at play. Therefore, Chapter 1 describes the social and family abandonment of the ethnographic protagonists of this research: three children with various disabilities and their adoptive mothers. As Raffety shows, cultural stigma around child abandonment in China has risen alongside the country's involvement in ICA. The number of rejected children abandoned in orphanages increased considerably from the 1990s to the present day. By contextualising the ecologies of foster care in China and abroad, Chapter 2 connects political support for ICA with higher rates of abandonment of children with disability starting around 2005. Following this line of argument, Chapter 3 illustrates a shift in the emotional process of caregiving, in which foster children with disabilities change from being considered ‘ugly children’ to beloved foster sons and daughters. While at first glance the foster parents’ motivations appear to be economic, they are actually stimulated by ‘curiosity and adaptability’ (73). Throughout the process, Raffety therefore explains that disabled children and their foster mothers demonstrate their agency in creating forms of everyday resistance against social abandonment, as well as their capacities to generate affective ties with one another that go beyond mere economic horizons (74).

Delving deeper into the ecologies of foster care in China, Chapter 4 elicits the ambivalence of orphanage officials, as well as representatives of an organisation (Mercy Care) that deals with children's fosterage, when interacting with foster mothers. Such ambiguities materialise in the ways these officials describe foster mothers as capable or incapable of looking after and caring for children with disability. By expanding on these previous directions, Chapter 5 questions how the exceptionalism placed on fostering children with disability within their families reinforces their marginalisation and stigmatisation in Chinese society. To provide an explanation for this query, Raffety brings to light interesting ethnographic material from Nanning, the capital city of the Guangxi region, where she conducted fieldwork, and chronicles ways in which entanglements between foster families and the global adoption market contribute to maintaining and reenforcing normative, racialised and ableist family structures and hierarchies within and outside of China. Focusing ethnographically on the trajectories of Raffety's interlocutors, the materials presented in Chapter 6 show how the affective and emotional sides of temporary foster arrangements actually complicate the vulnerability of the Chinese state, as embodied by the orphanage international non-governmental organisations’ workers who were monitoring these cases. While foster arrangements appear to be considered temporary by the state bureaucracy, they conversely appear to be motivated by strong affective ties, when considered by orphanage officials. Here, therefore, the ‘neediness’ (122) of foster families and the emotions accessible within them challenge the international adoption system and disrupt the normativity of Chinese biological families, as designed by national governmental institutions. Based on this ethnographic analysis, the final chapter concludes that foster families have transformative effects on foster children and mothers as well as on orphanage officials. Despite their temporary nature and presumed ‘replaceability’, such entanglements represent an important aspect of kinship and state organisation. Hence, Raffety defines their natures as ‘needy’ (135). Therefore, the volume highlights how their temporality and replaceability disrupt, challenge and change ideas of relatedness and belonging previously set up in conformance to the ideas of durable, normative and stable biological families in China.

Each of the three volumes discussed thus sheds light on different aspects of disability and chronicity. While the three authors offer inspiring ethnographically related contributions, there are critical points that some readers may wish to be addressed. For instance, in Friedner's book, a more in-depth discussion of the legal-political infrastructures and power dynamics surrounding and shaping cochlear implant technology in India would have provided greater insight into the government's objectives behind such endeavours, including the promotion of outdated cochlear implant processors and models. Regarding Dokumacı’s volume, some readers might appreciate a more thorough intersectional analysis of her interlocutors’ experiences. Although already present throughout the volume, more ethnographic evidence detailing the complex entanglements between the emergence of activist affordances and the diverse politico-economic contexts in which her research participants live in Turkey and Canada could have enriched the volume's analytical intervention and fleshed out the epistemological relevance of her original concept. Similarly, the interactions between gender and power dynamics in the enactments of types of activist affordances, especially when these affordances involve intersubjective relationships, are also worth exploring further. Raffety's essay would have benefited from a more nuanced scrutiny of the social meaning, ecology of support, and experiences of people with disabilities in China, to better understand which types of perceptions of bodily non-normativity foster or do not foster family arrangements. However, these points are minor drawbacks and can represent starting points for future research on these topics. Despite this, the three volumes under review here remain essential reading for professionals, policymakers, scholars and students in anthropology and other social sciences, with an interest in matters of disability and chronicity, as well as topics such as kinship, the environment and new technologies in Global North and South societies.

In closing, I want to emphasise a theme all three accessible and illuminating volumes touch on from various angles. The analysis of experiences of disability not only allows readers to understand the constraints and efforts of disabled people while living in a highly ableist environment but also helps them comprehend how hierarchical ideas of normality and norms are imposed by various actors, such as government agencies and institutions, national and international companies, families and society at large. Therefore, these three books contribute a significant critical lexicon that foregrounds how people with disability manage to construct a habitable world through various types of entanglements with technologies, their environment and their circles of relatedness vis-à-vis multiple dynamics of power, unequal distribution of rights and hierarchical ideas of life, gender asymmetries and racial issues.

Giorgio Brocco

University of Vienna

giorgio.brocco@univie.ac.at

Charlotte Al-Khalili, Waiting for the Revolution to End: Syrian Displacement, Time and Subjectivity, London: UCL Press, 2023.

Charlotte Al-Khalili's Waiting for the Revolution to End: Syrian Displacement, Time and Subjectivity is an ethnographically significant contribution to the anthropology of Syria. The book's data is drawn from ethnographic fieldwork conducted over several years in Gaziantep, on the Syrian–Turkish border. Al-Khalili examines the Syrian Revolution's ongoing impact on the lives of Syrians, particularly those living in exile in Turkey. The book makes clear that the revolution is an unfinished process that continues to affect the daily life of Syrians. Despite facing the defeat in a political sense, the revolution's legacies survive and continue to shape Syrians’ subjectivity and societal structure in exile on both a collective and personal level.

Giving voice to what might be termed an anthropology of revolutionary defeat, the book situates its analysis within the broader context of previous studies of unfulfilled revolutions. That is, the tragic consequences or unintended outcomes of revolutions, and how revolutionary values and social relationships continue to influence everyday life, despite their apparent failure. Its contribution aligns with a broader tendency in the anthropology of revolution to focus on the subjectivity of revolutionaries, looking to their inner world and commitment to the revolution even after its defeat and their exile.

The book explores how the values of the Syrian Revolution—justice, dignity and freedom—were incorporated into the lives of Syrian people and reflected in their political, cultural, and social activities, as well as their protests, businesses, and forms of political organisation. Al-Khalili argues that these values helped them to define the spatial dynamics of a revolutionary community in relation to those who continued working and sacrificing their lives for the revolution inside Syria.

Al-Khalili examines how the Turkish government initially designated Syrian refugees as ‘guests’, offering an ambivalent kind of hospitality within an uncertain legal landscape that limited their ability to plan their future. The displaced Syrians she studied among navigated this by establishing informal businesses and cultural initiatives. Yet the state of uncertainty they faced extended into their temporal experience, distorting their perceptions of time; the past is idealised, the present is suspended, and the future remains uncertain.

Waiting for the Revolution to End shows how the revolution caused significant changes among displaced Syrian refugees in Turkey. With household dynamics altered, gendered relations were transformed in ways that for some harboured more profound effects than the revolution's political defeat. At the same time, discourses of tragedy and loss have been redefined by the theological, temporal and moral dimensions of the revolution, particularly when its outcomes are interpreted by Al-Khalili's interlocutors as part of a divine plan. Yet this does not explain why the book's cover shows the revolutionary flag with the phrase ‘Allahu Akbar’. This phrase was added to the flag when revolutionary groups wanted to emphasise and foreground the Islamic identity of the revolutionary brigades at a time when ultra-radical Islamic groups were trying to outflank them and declare them infidels. As the book deals most centrally with the revolutionary language of 2011, it is unclear why this specific image was chosen.

Furthermore, while the book clarifies how the revolutionary process has reshaped the way Syrians interact with each other, creating new revolutionary subjectivities despite the geopolitical defeat, it would have been worthwhile to think about the limits of the revolution's influence. This could have been dealt with through greater attention to the economic and class background of its revolutionaries. Preparedness for martyrdom, self-sacrifice, or any revolutionary practice is not only economic but also a matter of symbolic and social capital. Greater attention to these forms of capital would have helped us to understand the reasons why some sacrifice themselves while others refrain from doing so, despite sharing the same political stance.

Despite these minor critiques, the book is sure to become a significant reference work within the literature on revolution and exile. It also stands out in the anthropology of Western Asia for its ability to read themes of political violence, displacement and gender from a revolutionary perspective.

Nerouz Satik

Sussex University

Ns495@sussex.ac.uk