REVIEW OF Connie L. Scarborough. Viewing Disability in Medieval Spanish Texts: Disgraced or Graced.

Reviewed by Iona McCleery (University of Leeds)
Published on H-Disability (December, 2018)
Commissioned by Iain C. Hutchison (University of Glasgow)

Untitled [Iona McCleery on Viewing Disability in Medieval Spanish Texts: Disgraced or Graced]

This interesting new study of disability in medieval Spanish literature will be seen as both useful and frustrating in equal measure. Connie L. Scarborough is a well-known specialist in Castilian literature (this is what is meant by Spanish literature in the title) and she knows her chosen texts inside out. The range of texts in this book is rich. Scarborough uses multiple genres: chronicles, miracle collections in verse, fables, mirrors or guides for princely behavior, troubadour poetry, courtly epic, satire, proverbs, and romance, most of which date from the thirteenth and fourteenth centuries. Historians of medicine have undoubtedly neglected some of these genres for their insights into health. The volume is useful in that it presents some little-known texts to a wider audience and draws on them quite well to provide some understanding about medieval Castilian beliefs and attitudes toward people described as sick and impaired.

The frustrating aspect of the volume is its lack of context. The author explains in her introduction: “While students and researchers in the field of Spanish medieval literature will be familiar with many of the texts I include in the following chapters, I hope they will discover the disabled characters they may have overlooked in previous readings” (p. 13). This is undoubtedly a worthy venture for such students. However, the quotation reveals the main problem with Scarborough’s book: the very narrow audience that she envisaged while writing it. At no point does it seem to have occurred to the author, or the editors of the new series Pre-modern Health, Disease, and Disability in which it is published, that this book would appeal to an audience that might know little about medieval Spanish literature (such as potentially many of the members of H-Disability).

The book starts with an introduction to disability studies and general medieval attitudes toward impair- ment and illness. It then devotes a chapter each to par- ticular kinds of impairment or illness: lameness, blind- ness, deafness and inability to speak, and leprosy, before ending with a chapter on miracles “cured by the grace of God,” which unfortunately repeats some of the earlier examples (p. 165). There are undoubtedly issues with ret- rospective diagnosis, translation, labeling, and terminology, but rather than dwelling on these aspects it is impor- tant to point out the religious framework used through- out and expressed by the book’s subtitle: Disgraced or Graced. Although in a footnote the author notes “that there was a diversity of opinion about the association of sin with disability in the Middle Ages,” the decision was taken to follow that approach without discussing any other in much detail (p. 19n25).

An extra chapter on the texts and their authors and some guidance on how to read them in relation to the politics, medicine, religions, and culture of the kingdom of Castile would have transformed this book. It would have added some much-needed depth, debate, and texture. For example, one of the most important texts is the Canti- gas de Santa Maria (Songs of Holy Mary), a collection of over three hundred poems dedicated to the Virgin Mary ordered to be compiled by King Alfonso X of Castile in the mid-thirteenth century. Readers of the present book who do not know this literary source will perhaps be confused as to why they are offered examples of healing miracles from this text in settings that range from imperial Rome to twelfth-century France to the court of King Alfonso himself. The Cantigas brings together Marian miracles from across much of Europe and includes some early Christian stories, but this is never explained.

A contextual chapter might also have allowed space to provide more awareness of the work that scholars of medicine and literature, especially in the modern Iberian Peninsula and in the United States, have done in several languages on medical texts, institutions, diseases, and practitioner-patient relationships during the period and region in question, and beyond. At no point is any of the work of Luis García Ballester on health in medieval Castile cited. No attention has been paid either to Catalan, Portuguese, or Navarrese texts and contexts, despite all the work that has been done on wider Iberian health by many scholars, or to the great need for comparison across kingdoms and across Europe. In fact, there seems to be no secondary literature cited at all on anything published since 2014, which is a problem in a fast moving field. A major omission is Jonathan Hsy’s essay on disability in the Cambridge Companion to the Body in Literature (2015), which engages with one of Scarborough’s key texts: the Arboleda de los Enfermos (Grove of the Sick) by Teresa de Cartagena, in which, uniquely for this pe- riod (the mid-fifteenth century), she describes her personal experience of being deaf.

Having said all this, it is essential to say that this book is full of fascinating examples worthy of much more comparative in-depth study. Some of the motifs that it describes—for example, the associations between ill- ness and imprisonment—are striking. It is also true that many of these texts express profoundly moralistic atti- tudes that link impairment and punishment in negative ways. Studied in isolation without much context, these examples might confirm some modern views that life in the Middle Ages was grim and that medieval society was profoundly prejudiced against those perceived to be im- paired. Future work needs to take these representations of illness and subject them to much deeper analysis that takes into account genre, transmission, translation, and style, while setting them side by side with historical and bioarchaeological evidence that might provide a differ- ent picture. This book is recommended for its presenta- tion of less well-known texts in a very readable way, but in the future there should be much more collaboration between scholars from all the disciplines keen to under- stand disability in the past. It is not just a question of the sciences and the humanities working together—often put forward as a desideratum in the history of the health of past populations—but also a question for more of the humanities subject areas to work together toward their common goal of understanding the human condition.

Review:Bianca Frohne Cordula Nolte, Uta Halle and Sonja Kerth, eds. Dis/Ability His- tory Der Vormoderne: Premodern Dis/Ability History.

Untitled [Will Rogers on Dis/Ability History Der Vormoderne: Premodern Dis/Ability History]

Bianca Frohne Cordula Nolte, Uta Halle and Sonja Kerth, eds. Dis/Ability His- tory Der Vormoderne: Premodern Dis/Ability History. Affalterbach: Didymos-Verlag, 2017. 512 pp. EUR 58.00 (cloth), ISBN 978-3-939020-83-7.

Reviewed by Will Rogers (University of Louisiana, Munroe)

Commissioned by Iain C. Hutchison (University of Glasgow)

It seems that one of the challenges of working in, and with, disability studies is recognizing that definitions and pressures affecting those who are disabled or impaired are often local and specific—one needs to attend to individual cultural and social conditions for studying how those with impairments or disabilities lived and how they are depicted in literary and historical sources, among others. At the same time, concepts and approaches can, and should, be borrowed from these more local environs for other contexts and more global articulations of the lived experiences of the impaired and disabled; indeed, our views of certain kinds of identity and disability might inform and elucidate other, seemingly unconnected expressions of disability or impairment. One of the major impediments of such borrowing is linguistic barriers and the tendency of citing, especially in the Anglo-American academic world, English-language materials. Thankfully, Premodern Dis/Ability History: A Companion is different. This collection, handbook, and guide seeks something quite ambitious: a kind of survey of the field of disability studies, with a focus on premodern subjects, topics, and areas of concentration. And the Companion’s bilingual nature will appeal to specialists of the premodern world, especially scholars working with Germanic materials or early English texts and subjects.

The volume is capacious, presenting overviews of the book itself at the beginning and then the field of premod- ern disability studies in section 2, before moving to more specialized topics such as “Environments and Communi- ties” (section 4); “Agency” (section 7); and “Experiences and Interpretations” (section 8). While much of the book is in German, these opening sections—the overviews and

sections on rationale and methodology—are bilingual in the purest sense. There is an opening statement, which explains how to use the book, which is printed first in German, “Wofür und für wen ist Handbuch?” and then followed by its translation in English, “How to Use This Book.” Writing about the number of specialized books and handbooks for disability studies currently available, and which focus on “the subjects, theories, methods and sources of dis/ability history,” the editors explain the need for a volume that focuses on premodern expressions of disability (p. 18). Indeed, as opposed to companions to modern disability studies, “there are few reference books which provide fundamental knowledge for the study of dis/ability in the medieval and early modern era,” even as other forms (articles, monographs, edited collections) have dealt with the history of disability and impairment (p. 18). These comments are central to the book’s aim and purpose—none of these sections is meant to be exhaustive—as this handbook offers a basis for knowledge without presenting any claim to unanimity. As the editors point out in this section, “due to the heterogeneous and fluid character of current research, controversial ideas and attitudes concerning theories, models, terminologies and spellings (dis/ability, disability) are prevailing“ (p. 19). This opening guide concludes with a note on the format of the individual entries, which appear in German and English. For the German articles, an English summary appears first, which will be of great use to readers of the book as a way to access work on disability histories in the premodern era. Inclusion of English summaries offers scholars assistance, especially if their first language is not German. This commitment to open- ness defines the volume, from its format and languages to its methodological and theoretical commitments, as the handbook voices an ongoing debate on the role and shape of premodern disability studies.

Following the guide to the handbook, Uta Halle con- ceptualizes the state of the field, represented by this volume, in “A Work in Progress: The Research Programme, Premodern Dis/Ability History,” establishing some over- arching concerns and directions for the handbook as a whole, and the state of the field for premodern disability histories. She voices the effect that history of disability has had, not only on more general histories of the pre- modern era, but also on the theories, methodologies, and terms of modern disability studies. She argues that “dealing intensively with a historically and culturally unstable phenomenon such as dis/ability enables us to continuously question, or challenge, established analytical categories and concepts, and to sharpen our analytical tools” (p. 27). What follows is quite helpful: Halle outlines the various questions and concerns that a history of premodern disability offers, including the shape of terms and concepts from medieval Europe that reflect an identity based on impairment or disability, and considering whether these impairments or disabilities occasioned any kind of notice, special treatment, or importance in terms of daily social life. Besides these questions, Halle also offers a rationale for centering this study of premodern dis- ability on medieval literary texts and gives an overview of the state of German research into disability histories. The structure and concision of her rationale commends the various sections. For this reviewer, however, the discussion of the field in Germany was new information, and Halle’s guidance provides structure on how to approach the handbook.

calization of identity” (p. 132). Highlighting ethics of the body based both upon care of that body and a real- ization that the dominant subject is “partial, incomplete,” dismodernism voices much of what premodern disability histories have expressed about the nuanced view of the disabled body.

Later in the handbook, Bianca Frohne’s “The Body in Pain,” found in Section 8, fleshes out some considerations of how pain intersects with a number of different fac- tors, including disability and cultural contexts. She notes that, in the face of “further research from the perspective of premodern dis/ability history, it seems promising to also ask specifically how the body-in-pain was perceived of in premodern times, and how it was linked with medi- cal, emotional, sensorial, and religious concepts“ (p. 410). These histories and depictions of bodily pain, in Frohne’s view, not only reveal the ways in which pain could be expressed and felt in literary texts, but also how it ar- ticulate other characteristics and meanings of the body. Indeed, as the quotation indicates, looking at pain also means examining histories of the senses and how emo- tional responses might be shaped by pain. This article, while brief, is an example of the kind of work one can expect from the handbook. Cognizant of how premod- ern disability studies overlaps with other areas of histor- ical inquiry, this view of the body in pain nevertheless touches on a range of different genres, texts, and illus- trations, moving from medical texts to miracle accounts.

Histories of disability and impairment, situated as they are in this handbook, demonstrate how modern notions of disability might benefit from these examples from their past. But this handbook offers more than a connection between the past and present. As a literal and figurative translation of work on disability in the past and in the present across German and English, the hand- book implicitly highlights one of the central emphases of disability studies: access. Indeed, as Tanya Titchkosky reminds disability scholars, disability and access are tied, as “disability is a concept that gives access, not only to calamities, world events, and undesirable states of af- fairs, but also to people. The disabled, people with dis- abilities, disabled individuals—these terms, too, represent concepts used to notice and orient self and other”.[1] It is not the reviewer’s intention to tie access and disability to language variation and translation. Instead, this work speaks to a scholarly ethics that evokes a central concern of disability studies: the centrality of access not only to disability identity and the lived experience of people with disabilities and impairments, but also for those who publish and read about it (groups that are not mutually exclusive). Because Anglo-Americans often study exclusively English materials, work done in other languages is frequently unread. But Dis/Ability History Der Vormoderne Ein Handbuch strikes its reader as a volume interested in access from the beginning of its front cover, where the title is presented first in German, then English, along with the often challenging work which follows that title. Note

[1]. Tanya Titchkosky, The Question of Access: Dis- ability, Space, Meaning (Toronto: University of Toronto Press, 2011), 5.

If there is additional discussion of this review, you may access it through the network, at: https://networks.h-net.org/h-disability

Citation: Will Rogers. Review of Cordula Nolte, Bianca Frohne, Uta Halle and Sonja Kerth, eds., Dis/Ability History Der Vormoderne: Premodern Dis/Ability History. H-Disability, H-Net Reviews. November, 2018.

Review of Privacy and the Past: Research, Law, Archives, Ethics

Susan C. Lawrence. Privacy and the Past: Research, Law, Archives, Ethics. Critical Issues in Health and Medicine. New Brunswick: Rutgers University Press, 2016. 188 pp. $49.95 (cloth), ISBN 978-0-8135-7436-3.

Reviewed by Pat Reynolds (independent scholar)

Published on H-Disability (September, 2018)

Commissioned by Iain C. Hutchison (University of Glasgow)

Although this book was published in 2016, it feels older, partly because research for it began in the previous decade. The introduction is an account of a particular experience of supervising a historian who had difficulty accessing records: “From talking with historians, archivists, graduate students, and others in the years since … it became very clear to me that conditional access to archival materials, confusion about privacy claims for the dead, and the creeping influence of the language of research ethics are all affecting those who work on the history of the last 200 years” (p. 16). The book explores what it means to be sensitive about privacy for the dead. It is an attempt to understand the “power [of privacy laws] and the role that historians have in negotiating the boundaries between individual privacy and historical accuracy” (p. 1). One chapter is devoted to research ethics and federal laws, one to the legal context for the practice of history, a third to the practices of archivists that result, or do not result, in a record being open to a few or to all, and a fourth to the work of historians. The book focuses on the United States. This is understandable, given the complexities of law, archival practice, historical research ethics, and other areas covered within a single country of multiple jurisdictions. As a European non-lawyer, who has not worked in an archive in the United States, and whose research there has largely been with archaeological finds and sites and published documents, I am grateful for the clarity with which the author lays out the situation in these areas. Occasionally, I felt that a slightly wider view would have been helpful. For example, coverage of the General Data Protection Regulation (GDPR),[1] which came into force in many European countries in May 2018, and the “Right to be Forgotten” in its predecessor, the European Data Protection Directive,[2] would have been useful since the legislation is centered on the citizenship of the individual, not their physical locality. The chapter on research and ethics includes a very helpful table of the applicable federal laws (to 2013). It covers in some detail the case of the Adams County Historical Society, who wished to make burial records from the Hastings Regional Center (formerly the Hospital for the Incurably Insane, etc.) available, as the graves were only marked with numbers. In this chapter, Lawrence argues that the term “research” in the influential Belmont Report has been inappropriately used to cover historical research, rather than being appropriately restricted in all instances where it is mentioned to biomedical and behavioral research.[3] Thus, it says it covers any investigation which “obtains (1) data through intervention or interaction with the individual [e.g., talking], or (2) identifiable private information.” However, the element in brackets is not in the original. The report gives the examples of venipuncture and manipulation of the subject’s environment to clarify this definition. However, the author wishes to indicate that the definition could apply to talking and thus includes oral history. My own background is in archaeology, which in the United Kingdom is seen as a specialism of history (rather than of anthropology, as in the United States), and thus I would challenge the assertion that historians do not usually test hypotheses or follow formal procedures. The first time the author encountered the law, it was in the form of the Health Insurance Portability and Accountability Act (HIPPA), which covers the use of individual’s health information, whether that individual is living or dead, if the information is housed in a building that has the health information of living people. Lawrence notes that this act is grounded in the belief that medical information exchanged between a patient and their medical practitioner is to be kept confidential between the two, and not be more widely shared, even after death. However, HIPPA is used to protect information that is not confidential, but visible to everyone. She also notes the argument that revealing hereditary medical conditions of the dead can have an impact on insurance costs and coverage restrictions—or even access to insurance for living family members. A wider range of not necessarily medical conditions, including abuse, abortion, adoption, ethnicity, sexuality, and poverty, are assumed to have a familial component, and public knowledge of such conditions can thus harm the living. However, the author has found no documented case of this, yet the fear of harmful gossip is real in tight-knit communities, and she notes that to protect this data, rather than opening it, removes the experiences of these people from history.[4] The fear of harm (and lack of knowledge of benefits) is apparent as the driver for privacy throughout the book, but there is remarkably little research or case law presented here. Examples of benefit, in particular, need to be shared. It seems strange that legal aspects of oral history are included, as they stretch the coverage from the dead to the living, but other methodologies of recent history, such as participatory research and big data, are not. The living do need to be included in this work, as the author argues that, if the records of the living are not collected or created, they will not exist for future historians, they might be included only incidentally, and the rights of the living will increasingly be extended to the dead, in perpetuity. And those rights, or more particularly, the penalties for breaching them, firmly encourage caution by those who have the power to grant access or cause what could be viewed as a data breach. In considering the role of the oral historian, I found it odd that giving the subject the power to edit and redact was not included, although the power to censor is mentioned later in a case study of textual history. In the chapter on the legal context for historians, Lawrence helpfully compares the relationship of journalists and historians to the First Amendment. Again, the power to decide the potential of harm is important. For journalists, case law does exist for material harm, but rarely has it involved the privacy of the dead—the exception being images of recently, and horrifically, murdered people. Lawrence notes that vilification of the dead is a crime in some states, but monetary damages have not been awarded. The crime is that of incitement—the information would lead or has led to a breach of the peace by others. In the chapter on archivists and allied professions, Lawrence argues that ethical codes are “useful aspirational documents” that are an aid to decision-making, but not particularly helpful in specific circumstances (p. 70). This is not the case in the United Kingdom, where the “individual members [of the Archives and Records Association] have a duty to obtain a ruling, through the Honorary Secretary of the Association, on all occasions when they are in doubt as to the proper standards of professional behaviour.”[5] While the author struggles to identify instances when archivists proactively used the materials in their care “as agents of resistance and exposers of crime,” it is clear that all archivists see their role as crime prevention agents, primarily through the maintaining, unalterable without that alteration being evident, records that support “legal, fiscal, political and social accountability” (p. 73).[6] Given that many archivists take a passive role in social activism and crime detection, but enabling others to hold wrong-doers accountable is a prime role, the right of access to materials is a vitally important topic, which is explored in detail. Lawrence covers the practices of selection and disposal, closure and redaction, and user management. On this last topic, she argues convincingly that denying access to researchers who do not have the right background (academic or social), in part through ensuring that useful information does not appear in finding aids, and in part through obscure formal application processes, is not granting privacy to the dead. Lawrence hints, but does not make explicit, that these practices are discriminatory against persons with disabilities, who are less likely to have “the right background,” less likely to be able to travel to the archive, and less likely to be able to afford pay-to-view data. Thus those with the most to gain from open access to health and disability records are more likely to be kept from the knowledge that they exist, or of what they contain. The author goes on to explore in detail the processes and practices that may be involved in the transfer of records from individual ownership to an archive, and discusses attitudes to the intentions of the dead, as expressed in their lifetime, from the viewpoint of both archivist and historian.

The sixth chapter returns to the work of historians. It is clear that by “historian” the author means someone working within an academic setting or as an independent scholar, but not someone researching in a commercial, personal, or community setting, such as an antique dealer researching provenance, a family historian, or a member of a local historical society working on a walking guide to historic buildings. Three aspects of consideration of privacy are noted: in passing on research, in finding sensitive information, and in what they publish. Historians of all these kinds amass data, sometimes donate it to an institution (such as an archive, a genealogical entity, or local amenity group), or sell it (as is the case with a family tree or a provenance). They almost all use a mixture of public and more closed sources. They almost all publish in some form—be that an auction catalogue, an online family tree, or a downloadable pdf on a parish website. Lawrence acknowledges that there is a “wider world of scholarly and academic publishing” and attempts to distinguish the biography and exposé from history, although she recognizes that some historians do focus on individuals, or write with a social justice agenda (p. 91). I remain unconvinced that they are divisible in the way that (say) history and botany are. The exposé, by its nature, always puts the interests of the many above those of descendants and wrong-doers (or asserts that it does), whereas history may, or may not. Lawrence distinguishes history from memory and argues that they have distinct moral stances. History, as a discipline (and the examples of nonacademic historians I gave fit this definition), has standards for rigorousness of research, and counterarguments are expected. Enshrined memory, on the other hand, is based on a collective belief that some things should not be forgotten, and is used for building and sustaining identity. As such, the dead continue to have a “symbolic existence” (pp. 110-11, quoting Daniel Sperling).[7] Lawrence concludes that historians have to take a critical view of their intuitions about harm, and thoughts about respecting that symbolic existence, and this makes “overgeneralised ethical positions and inadvertently restrictive regularity language” inappropriate (p. 113). She therefore calls for a 115-year closure period for “only the most extremely sensitive of records” (p. 120). Throughout, the key issue behind legal and ethical frameworks protecting the dead is revealed as stigma. Do we (archivists and researchers) act in ways that challenge stigma, or do we perpetuate stigma by acknowledging that it exists and protecting the living individual or symbolically existing dead from affiliation with a vilified group or behavior by reason of descent, hero worship, or some other association? The potential for the revelation of a stigmatizing attribute of a dead person to lead to civil unrest mentioned before says much about how a section of society views that attribute. The focus of this book is largely on how we (as a society, its components and individuals) can best prevent unnecessary and damaging restrictions to access. It would be excellent to see companion volumes addressing these issues in different legislatures and cultures.

Notes

[1]. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation).

[2]. Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.

[3]. The reference to section 46.102(f) of the Belmont Report (https://www.hhs.gov/ohrp/ regulations-and-policy/regulations/45-cfr46/index.html#) is incorrectly cited by the author as 45 CFR 46.02(f). See https://www.hhs.gov/ ohrp/regulations-and-policy/belmont-report/ index.html.

[4]. In an alternative, positive, view of gossip, Melanie Tebbut notes how women use gossip to provide support and protection rather than simply to degrade and harm. Women’s Talk?: A Social History of “Gossip” in Working-Class Neighbourhoods, 1880-1960 (Aldershot, England: Scolar Press, 1995).

[5]. “ARA Code of Ethics,” adopted May 9, 2018, Archives and Records Association UK and Ireland website, accessed August 5, 2018, http://www.archives. org.uk/about/ethics.html.

[6]. Elizabeth C. Macknight, “Archives, Heritage, and Communities,” Historical Reflections/Réflexions Historiques 37, no. 2 (2011): 105-22.

[7]. Daniel Sperling, Posthumous Interests: Legal and Ethical Perspectives (Cambridge: Cambridge University Press, 2008), 239.

Review of Interrogating Disability in India: Theory and Practice

Nandini Ghosh, ed. Interrogating Disability in India: Theory and Practice. Dynamics of Asian Development Series. New York: Springer, 2017. 198 pp. $109.99 (cloth), ISBN 978-81-322-3593-4.

Reviewed by Shubhangi G. Mehrotra (SUNY at Buffalo)

Published on H-Disability (August, 2018)

Commissioned by Iain C. Hutchison (University of Glasgow)

Interrogating Disability in India: Theory and Practice is a welcome addition to the emerging field of disability studies, especially disability rights and activism, in India. With a compilation of eleven chapters penned by authors from multidisciplinary backgrounds in sociology, political science, social sciences, linguistics, history, economics, social work, and law, the volume approaches the concept of “disability” from interdisciplinary perspectives. The book begins by discussing the experiences of, and challenges faced, by disabled people throughout the world. Within this global context, the chapters then address lived realities of, and sociocultural-administrative impediments encountered by, disabled people and their caregivers in India. In her brilliant introduction, which is also chapter 1, editor and author Nandini Ghosh coherently weaves together the purpose of the essays that comprise the volume by illustrating their critical contribution to the movement of disability rights and activism in India. In addition to deducing how indigenous sociocultural, political, and legal perspectives inform “disability” experiences in Indian society, Ghosh also critiques the bureaucratic regimentation and poorly designed policies adopted by the Indian government since independence in 1947 and the substantial amount of work that still needs to be accomplished to successfully provide equal opportunities to the large disabled population within India. While highlighting the inefficaciousness of the various government acts and state policies designated for the disabled population, Ghosh also draws attention to the hierarchal structures within the disability activism model in which visible disabilities like blindness and locomotor impairments overshadow invisible disabilities, such as speech, hearing, and intellectual impairments— not just in the discussions of policy drafting and benefits but also in the demands for sustainable state-sponsored support systems. Ghosh concludes her introduction by proposing a reconceptualization of “disability” in India that, when intersected with other traits of differentiation, such as caste, class, religion, and gender, becomes a more sensitive identity, demanding comprehensive understanding and tailored policies to fight its stigmatization and oppression. Echoing similar sentiments, Shilpaa Anand, in the second chapter, critiques the use of “models” as limiting understanding of the diverse sociocultural contexts of the Indian disabled population and suggests the usage of “context-sensitive” theoretical and methodological tools. Tanmoy Bhattacharya, in the third chapter, argues that People with Disabilities (PwD) in workplaces and education are recruited “solely for the reason of diversity” as they are excluded from discussions on diversity. He contends that, in the absence of any agency and participation in these “progressive” measures, the diverse workforce comprising PwD becomes merely a “marker of spectacle” (p. 40). Bhattacharya corroborates his argument with data and examples that let him deduce the misrepresentation and inadequacy of several government schemes that fail/ed to incorporate the disabled population with the “normate” population in schools, colleges, and workplaces. Being able to provide a critical alternate viewpoint on the ineffectiveness of government policies for PwD, this chapter is useful in determining problems in the current structure and the substantial work that needs to be done to genuinely include the disabled population as a part of diversity groups in workplaces or educational establishments. In chapter 4, Rukmini Sen illustrates the “marked transformation” from the Persons of Disabilities Act of 1995 to be voiced by the 2014 Rights of Persons with Disabilities Bill by discussing the “importance of inclusion while pointing to the constraints as well” (p. 65). Examining the practical application of the Disabilities Bill of 2014 and other bills since 2011, Sen argues that the “bills falter on two counts around this section on home and family” and further oppresses women with disabilities and those serving as caregivers (p. 68). Citing some specific cases of sexual violence against women with disabilities both at home and in institutions, Sen highlights the major limitations of a bill that not only denies the reality of violence against disabled women but also fails to recognize their rights to seek justice and fails to provide for any support. In chapter 8, Ghosh examines the lived experiences of Bengali women with locomotor impairment, showcasing how sociocultural notions like that of bhalo meye (good girl) disables these women and oppresses them by denying them their femininity and sexuality. Ghosh illustrates how the use of such mobility aids as crutches, calipers, and wheelchairs depends on certain situational factors. Examining how the degree of disability determines choice of clothes and notions of beauty for these disabled women, she demonstrates how cultural stereotypes further stigmatize disabled women. Being perceived as asexual and unfeminine, disabled women are infantilized by their families and rarely considered fit for marriage. Despite the denial of their sexuality, disabled women constantly feel pressured to prove their chastity and morality as they are subjected to often sexual abuse and unwanted sexual urges from males both inside and outside their families. Given the current state of reported sexual violence in India, both these chapters are crucial in highlighting the predicament of disabled women whose voices are often marginalized. The critical issue of “conversion handicaps” is discussed in chapters 5 and 9. In chapter 5, Achin Chakraborty and Subrata Mukherjee, using the governmental National Sample Survey (NSS) 58th Round (2002) and 2001 census as their main sources of data, focus on the “specific aspect of capability deprivation of the disabled” and argue for better understanding of the “complexity of conversion handicap in order to design meaningful public policy” (pp. 78-79). Chakraborty and Mukherjee not only illustrate the influence of “living arrangements and marital status” on conversion handicaps but also deduce how having higher education affects the quality of life for male and female disabled persons differently (p. 78). In chapter 9, focusing on the population of PwD in the rural blocks of West Bengal, Ipsita Sapra emphasizes the need to shift the focus from individual challenges to institutional challenges that prevent PwD from securing effective livelihood opportunities. Critiquing the inadequacies of policies and programs, and the lack of accountability of administrative, educational, and institutional organizations, Sapra believes that these poorly designed programs, policies, and bureaucracies, ironically, act as conversion handicaps for PwD themselves. In addition to dealing with poor infrastructure, inaccessible sites, and a limited number of trained teachers per school, PwD often find themselves victimized and embroiled in “a relationship of subservience to the institutions and their representatives” (p. 160). Chapter 6 extends beyond the volume’s primary framework of physical disabilities. Shubhangi Vaidya examines the cultural conception and lived experiences and subjectivities of people with intellectual and developmental disability, and their caregivers, with a particular focus on autism in Indian society. Situating autism as a relatively new disability that often remains undiagnosed, and one that is only discussed among educated middle-class and urban populations, Vaidya makes demands for an indigenous model based on a nuanced understanding of sociocultural contexts and differences that can successfully support and enable PwD, their families, caregivers, and society in order to cope with the needs of autistic people. Advocating the establishment of supported living centers like Aadhar, Vaidya argues that they offer long-term benefits in fostering a sensitive and caring environment for people with different subjectivities.[1] Madhura Nagchoudhuri and Srilatha Juvva, in chapter 7, argue for a renewed understanding of “disability” as a socially constructed identity by illustrating different case studies and anecdotal evidence that examine the channeling of the “power within” in order to become empowered. The authors mostly use case studies of disabled people who are educated, are employed, and live in urban environments, but this leaves a huge proportion of the disabled population outside the scope of their study. Not all disabled people have the “privilege” or “power” to use “power within” to feel empowered. The authors themselves call their contestations as “merely points of view that are stated from an outsider’s perspective” (p. 114). It is therefore not surprising that the chapter seems not just limited in scope but also lacking in effectiveness to add much to the theme of the volume, which includes some well-rounded and well-argued essays corroborated with extensive research. The volume ends with two chapters, authored by Jagdish Chandar and Ghosh, that investigate the history and efficaciousness of the disability rights movement since Indian independence. Overall, Interrogating Disability in India synthesizes a wide variety of issues prevailing within the scholarship of disability studies into a coherent and meaningful analysis. Although the volume sporadically mentions the hegemonic oppression faced by the intellectually disabled populations whose disability remains widely invisible and marginalized in state policies and government acts, the volume itself, ironically, alienates “intellectual disability” by including just one dedicated chapter on the lived realities and impediments faced by the autistic population. The focus is primarily on the history and challenges of physical disability in India. Nevertheless, this collection is still a useful resource for academics and researchers engaging with emerging scholarship in disability studies in the Indian context. In addition to being a helpful manual for policymakers and disability rights activists, the volume also offers a basic understanding of the challenges and discrimination faced by the majority of the disabled population in India.

Note

[1]. Aadhar is the name of a vocational center that provides “a structured environment” to the adult autistic population where they “are engaged in making bags, costume jewellry, household decorative items, etc.” and receive training in “work skills and soft skills that will enable them to seek employment in semi-sheltered as well as open settings” (p. 107). The author uses italics to write the name of this vocational center, perhaps, because it is a Hindi word that translates into literal English as “foundation” or “base.”

 

Review of Language, Power, and Resistance: Mainstreaming Deaf Education

Elizabeth S. Mathews. Language, Power, and Resistance: Mainstreaming Deaf Education. Washington, DC: Gallaudet University Press, 2017. 192 pp. $60.00 (cloth), ISBN 978-1-944838-04-1.

Reviewed by Coreen McGuire (University of Bristol)

Published on H-Disability (September, 2018)

Commissioned by Iain C. Hutchison (University of Glasgow)

The 2017 Oscar for Best Live Action Short went to a twenty-minute drama titled The Silent Child. Set in rural England, the film shows the central character, Libby, blossom when her mother, Sue, hires a social worker, Joanne, to try to communicate with Libby. Libby is profoundly deaf and unable to communicate until Joanne enthusiastically teaches Libby British Sign Language (BSL). We then see how the ability to communicate transforms Libby’s world. However, when arrangements are made for Libby to go to school, Sue insists that the sign language be stopped, as Libby will be attending a mainstream school with no specific provisions in place to help her. Sue defends her decision by citing the fact that neither the family nor other school children can use BSL and emphasizing that she wants Libby to be “normal.” In the last few minutes of the film, we see Libby sitting at her desk staring obliviously as the teacher stands behind her reading aloud the words for a spelling test. Finally, Libby stands alone in the playground and signs “I love you” at Joanne through the barriers surrounding the school. It is a heartbreaking final scene, and the viewer is left wondering how this situation could possibly be regarded as acceptable in a modern educational system. Elizabeth Mathews’s book goes some way toward answering this question through analysis of the experiences of d/Deaf and h/Hard of hearing (DHH) students in mainstream education in the Republic of Ireland.[1] Her qualitative studies took place between 2007 and 2008 and are based on the experiences of twenty-five DHH children. However, the focus of their experience is largely framed through encounters with their parents and the professionals involved with their education. However, this inequity does not limit the focus of this book, which primarily focuses on language choices in early childhood. Mathews explains this in the introduction, which also contains a sensitive and thoughtful discussion of the problems manifest in being a hearing researcher working with DHH people. Mathews acknowledges the historical tendency of hearing people to use Deaf people as a resource for study without “giving anything back” and reflects on the steps she has made to ensure that she does. That she succeeds in doing so is poignantly highlighted in one interview participant’s explication: “I have all Hazel’s books kept [sic], because I hoped and prayed one day this day would come. Where somebody would come and ask me what happened” (p. 125). So, what did happen? Mathews explains the current state of DHH education in Ireland by first exploring the history of DHH education. Chapter 4, “Establishing a Hegemonic Medical Discourse of Deafness: A History of Deaf Education,” gives the most attention to the history of DHH education, but relies mainly on secondary sources. This lack of breadth means that there is a missed opportunity to contrast the situation in the Republic of Ireland to other areas, and consideration of Iain Hutchison’s work on the history of the education of the deaf in Scotland would have allowed for particularly fruitful comparison.[2] However, her historical case studies of St. Mary’s School for Deaf Girls and St. Joseph’s School for Deaf Boys in Dublin does provide fascinating original material and analysis, and gives especial insight into how the unique religious priorities within the Republic of Ireland have affected the provision of DHH education. For instance, Irish Catholic schools maintained Irish Sign Language (ISL) in the late nineteenth and early twentieth centuries while the rest of Britain moved towards oralism. This reluctance stemmed in large part from the idea that sign language was associated with the French (and therefore) Catholic system of education. However, by the mid-twentieth century fears about losing Irish Catholic DHH children to the British system resulted in the schools promoting a more negative view of sign language, which was subsequently banned entirely in favor of an oralist education. Mathews further assesses the importance of technology in facilitating this decision and explains that access to audiological equipment was pivotal in mobilizing towards pure oralism. Mathews follows on from this historical background with a chapter that considers present-day services, and this structure cleverly highlights the continuities between the isolated Deaf schools of the nineteenth century and the mainstream system currently in place. For example, the systematic exclusion of DHH teachers is less explicit than it was in the nineteenth century, but is just as effective. Mathews explains that most DHH students are exempted from studying Irish language. However, a high standard of fluency in this language is a prerequisite for primary school training. As a result, there are “virtually no DHH teachers working in the primary education system” (p. 38). More evidence of problems within the mainstream system emerge from the results of her qualitative studies, explored in chapter 5, “Reproducing a Hegemonic Medical discourse in the Irish Deaf Education System.” In her interviews, an emergent theme is the repeated example of parents being explicitly told not to allow their children access to sign language. This is constantly justified as preventing laziness or overreliance on sign against the acquisition of speech even although multiple studies have demonstrated that speech acquisition is not affected by use of sign and the latter can effectively supplement speech therapy.[3] Indeed, studies warn of the danger of withholding access to communication during early childhood and point out that bilingualism is never considered problematic in the same way.[4] Yet ISL is clearly shown to be demonized by medical and educational professionals as a “crutch” and a danger to spoken-language acquisition. One parent recounted being told not to teach their daughter sign language because she “would become reliant on sign, and where she was living in a hearing world, it was better that she develop her oral [sic] as much as possible” (p. 90). Other parents recounted facing opposition to their use of sign language and a recurring refrain features the sentiment, “no sign language if you want to get him talking” (p. 92). It is in the analysis of these interviews that Mathews explains the enduring authority of the medical model of disability through a Foucauldian conceptualization of power. Her conclusion is a call for greater collaboration between the Deaf world and the hearing world, as she incisively demonstrates that the mainstreaming of DHH children has resulted in a project of “normalization” rather than anything approaching true “inclusion.”

Notes

[1]. “DHH” is Mathews’s term and she explains and justifies its use in the introduction.

[2]. Iain Hutchison, “Oralism: A Sign of the Times? The Contest for Deaf Communication in Education Provision in Late Nineteenth-Century Scotland,” European Review of History 14, no. 4 (2007): 481-501.

[3]. Elizabeth M. Fitzpatrick et al., “The Effects of Sign Language on Spoken Language Acquisition in Children with Hearing Loss: A Systematic Review Protocol,” Systematic Reviews 2 (2013), https:// systematicreviewsjournal.biomedcentral.com/ articles/10.1186/2046-4053-2-108.

[4]. Tom Humphries et al., “Language Acquisition for Deaf Children: Reducing the Harms of Zero Tolerance to the Use of Alternative Approaches,” Harm Reduction Journal 9 (2012), https://harmreductionjournal. biomedcentral.com/articles/10.1186/1477- 7517-9-16.