Charmaine Robson. Review of LEo van Bergen, ‘Uncertainty, Anxiety, Frugality: Dealing with Leprosy in the Dutch East Indies, 1816-1942’

Author: Leo van Bergen Reviewer: Charmaine Robson

Leo van Bergen. Uncertainty, Anxiety, Frugality: Dealing with Leprosy in the Dutch East Indies, 1816-1942. History of Medicine in Southeast Asia Series. Singapore: National University of Singapore Press, 2018. 316 pp. $36.00 (paper), ISBN 978-981-4722-83-4.

Reviewed by Charmaine Robson (University of New South Wales) Published on H-Disability (October, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=55960

In his history of leprosy in the Dutch East Indies, Leo Van Bergen surveys the long time span from 1816 to 1942 and different areas across the vast archipelago, from Aceh at its northwest tip to the Maluku Islands (formerly the Moluccas) in the East. While rule by the Netherlands was the constant throughout this period, the cultural, economic, and political variegations within the colony inflected local practices and policies with respect to leprosy and served to limit any consolidated responses by the state. Policy change in governance and major international shifts, such as the Christian missionary movement, the Chinese laborers’ diaspora, and changing ideas about disease causation, were some of the factors that played a part in how leprosy sufferers were managed. But Van Bergen’s analysis does not stop at tracing action of such forces, because, equally, he is interested in inaction, the instances in which, despite undergirding pressures, definitive new policies were not instigated. And it is this inaction that seems key to unlocking the strikingly unconventional title of the book, Uncertainty, Anxiety, Frugality. Indeed, the title helps to answer a question central to this study: why did the Dutch East Indies, unlike many other countries, including the Netherlands’ colony in Suriname, never introduce mandatory isolation for leprosy sufferers? One reason, Van Bergen explains, was that the West Indies was a slave-based society, unlike its counterpart in the East.

The first chapter is a brief foray into the seventeenth and eighteenth centuries, tracing early cases of leprosy and their isolation in leper colonies by the Dutch East India Company. The book then moves to the first few decades of the early nineteenth century to focus on the beginnings of Dutch colonial control. Almshouses and leprosy colonies established in this period generally had poor conditions and, in reality, were more a means of shutting away the maimed and mendicant from society than a means of protecting its health. Leprosy, although considered communicable, was seen as a disease of the indigent and uncivilized. Europeans and the wealthy were spared the ordeal of removal from society. But there was also a diversity of attitudes toward leprosy sufferers and understandings of their condition in different places, and the chapter explores these among Western physicians, Muslim residents, and indigenous people.

By the mid-nineteenth century, the theory of heredity was overtaking older beliefs in the contagiousness of leprosy, even if debates on the subject continued. As a result, fears, especially for the health of Europeans, were dispelled. The government then stepped away from responsibilities for housing leprosy sufferers, which was a cost-saving measure and provided a veneer of benevolence. As the century drew to a close, following international advances in bacteriological science, the contagion theory once again gained traction. Van Bergen argues, however, that it was not science, nor in most cases the real numbers of leprosy sufferers, that ignited panic in the East Indies public and led to demands for compulsory isolation legislation. Much of the fear was drummed up by newspapers and fueled further by the increased movement of migrants in the colony, especially Chinese workers, who were regarded, as in other countries around this time, as the purveyors of leprosy.

Although this climate of panic did not lead to the passage of mandatory isolation laws, in 1907 leprosy was declared officially to be a contagious disease. The other response by government in this period was to outsource the care of leprosy sufferers to Christian charities and churches, one argument being that it would encourage people to enter leprosy institutions willingly. Unsurprisingly, this was not so much the case for those in such places as Deli, a town in Sumatra with a predominantly Muslim population. Van Bergen stresses that leprosy colonies varied widely in their conditions and systems of care, but many focused on “proselytizing and labour management,” to quote part of the title of chapter 5 (p. 133). Two examples are explored in some detail: Donorodjo on the coast of Java, run by Baptists, and Pulu Sitjanang, in Medan on the island of Sumatra, owned by the Salvation Army. This discussion includes some interesting contrasts and demonstrates the irrelevancy of the East Indies’ government ethical policy for residents of some of the harshly run leprosy facilities in the early twentieth century. Despite the absence of a colonial isolation law, people were brought to Pulu Sitjanang by police, subjected to strict discipline, and forced to work by military authorities, which oversaw operations. At Donorodjo, Christian conversion and Western education were attempted in order to “civilize” the patients. As well, the facility was set up as a Javanese village in which patients were expected to live as normally as possible, and to labor for their own subsistence and tend to each other’s nursing requirements.

Chapter 6 examines the aims and work of two short-lived secular, private organizations, the Society for Combatting Leprosy in the Dutch Indies (VtBL) and the Orange Cross during the second decade of the twentieth century. The former consisted of physicians whose approach was to prioritize care through district nursing services so that patients could remain at home, supplemented with small local clinics. Leprosy colonies would only be used for those who could not be cared for in their own houses, with admission purely voluntary. Both organizations declined by the 1920s, mainly due to lack of government financial support.

Little information is given on nursing and medical interventions by the Christian and secular organizations covered respectively in chapters 5 and 6, perhaps because the book’s focus is public health policy and the management of leprosy patients. However, with the phrase “the care of the sick” in its title, something more might be expected of chapter 6. The standard medication for leprosy around the world from at least the 1920s until the late 1940s was chaulmoogra oil; various other medicines were also given, as were other kinds of therapies. Chaulmoogra is mentioned briefly as supplied by the VtBL, but neither this treatment nor any other is discussed with respect to the leprosy colonies run by Christian organizations. Yet we can infer it was provided, first by the fleeting references to nurses and, second, from the statement that, around the 1920s, Donorodjo “was transformed into a treatment centre, including a hospital ward” (p. 155).

The final chapter documents invigorated efforts by the government to tackle leprosy after establishing the Public Health Service in 1920. Rising nationalism in the 1930s gave stimulus to this initiative, and we learn of one of its leading figures, Moluccan doctor and nationalist Joseph Batista Sitanula, who styled himself as an “Indonesian.” A greater focus on treating the leprosy patient came to prevail as the efficacy of the agent, chaulmoogra oil, was hailed internationally, and research and training institutes were set up. However, due to the expenses associated with these measures, prevention became the main goal for government and plans were put in place to introduce a leprosy ordinance in 1925. But ultimately it failed to pass, hindered by such arguments as the expense of its implementation, the inappropriateness of applying a one-size-fits-all model, and resistance by the indigenous. The last part of the chapter is a fascinating discussion of the debates among doctors about leprosy policy in the Dutch East Indies in the 1920s and 1930s, including by the delightfully named Doctors Flu and Lampe. We learn of the work and views of Sitanula and other Indies doctors and how their roles became highly politicized in the context of the struggles for Indonesian independence. The book ends before the Second World War, a war that spelled the end of Dutch colonialism and the beginning of effective treatment for leprosy.

Uncertainty, Anxiety, Frugality emerged from a history of medicine course at Vrije Universiteit Amsterdam. It has been thoroughly researched using a wealth of archival sources and is highly attuned to the historiographical particularities on colonial-world leprosy. The book is neatly organized into seven chapters plus an epilogue, each with succinct introductions and conclusions. Doubtless, it was a challenge to distill and explain the disparate responses to leprosy in the East Indies over the long time frame and then to situate the findings in the wider contexts of Dutch colonialism and European medical science—a challenge that Van Bergen has met with this excellent study.

Citation: Charmaine Robson. Review of Bergen, Leo van, Uncertainty, Anxiety, Frugality: Dealing with Leprosy in the Dutch East Indies, 1816-1942. H-Disability, H-Net Reviews. October, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=55960 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

M. Lynn Rose. Review of Singal, Nidhi; Lynch, Paul; Johansson, Shruti Taneja, eds., Education and Disability in the Global South: New Perspectives from Africa and Asia.

Nidhi Singal, Paul Lynch, Shruti Taneja Johansson, eds. Education and Disability in the Global South: New Perspectives from Africa and Asia. London: Bloomsbury Academic, 2018. Illustrations. xv + 322 pp. $130.00 (cloth), ISBN 978-1-4742-9120-0

Reviewed by M. Lynn Rose (American University of Iraq, Sulaimani) Published on H-Disability (July, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=56514

This excellent edited collection consists of a foreword and introduction, followed by two parts, with sixteen chapters altogether. Each chapter has, in addition to a list of references, a helpful summary of key points and suggested questions for discussion. The book is well indexed.

Alfredo J. Artiles, the author of the foreword, praises the collection for filling a gap in the literature on disability and education and calling for “situated analyses of inclusion implementation in the neglected contexts of Southern regions” (p. xv). The first chapter, “Education of Children with Disabilities: Changing Landscapes of New Opportunities and Challenges,” coauthored by the three editors, serves as an introduction to the collection.

Part 1, “Framing the Debates,” consists of chapters 2, 3, and 4. Chapter 2, by Pauline Rose, looks at including children with disabilities in the United Nation’s Sustainable Development Goal for education. Rose reports that new concerns focus more on the quality of education than on whether or not children with disabilities are attending school at all. Nidhi Singal, in chapter 3, “Researching Disability and Education: Rigour, Respect and Responsibility,” stresses that a fourth “R,” research, underlies an effective combination of disability and education in the Global South. This urgent need, she cautions, must be driven by “an in-depth appreciation of the realities and concerns of Southern contexts” (p. 53). The coauthors of chapter 4, Islay Mactaggart and Hannah Kuper, continue to stress the value of research, especially quantitative research. They include eight boxes with helpful resources such as box 4.6, which contains links to disability survey question examples.

Part 2, “Situated Perspectives,” has three subsections. The first, “Applying Conceptual Approaches,” opens with chapter 5, Matthew J. Schuleka’s “Advancing a Comparative Case Study Approach towards Education and Disability Research: An Example from Bhutan.” Schuleka points out that neither a universalist model nor a micro-level approach to research in disability and education is the most useful; rather, he advocates for comparative case studies as particularly relevant in the Global South. Next, “Diversifying Theoretical Commitments for a Transnational Inclusive Education: Lessons from India” (chapter 6) by Srikala Narayan brings to bear what she calls the Third World feminist lens, which “suggests that the preparation for inclusive education requires supporting teachers’ movement through, within and between different ideological systems to generate many, unpredictable and creative forms of resistance” (p. 122). The last chapter of “Applying Conceptual Approaches” is chapter 7, Colleen Howell’s “Participation of Students with Disabilities in South African Higher Education: Contesting the Uncontested.” South Africa’s post-apartheid program in higher education has always included the goal of equity for students with disabilities; still, a great deal of inequity remains. Howell argues that the capacity of South African universities must be built and that this must include training at the levels of teaching and learning.

The second part of “Situated Perspectives” is “Schooling and Teachers.” Chapter 8, “Reframing ‘Spaces’ for Educating Children with Autism: Perspectives from Urban India,” by Shruti Taneja Johansson, opens this subsection. Johansson encourages the consideration of local contexts and of the use of space, both physical and educational, as metaphor. “The educational space for children with autism,” she writes, “was not restricted to the school but extended to the parents as well” (p. 157). The ninth chapter is Richard Rose and Jayashree Rajanahally’s “The Application of Inclusive Principles and Practice in Schools in South India: Successes and Challenges.” The authors stress the importance of considering the local context, as well as the importance of teachers, principals, and tutors coordinating their efforts. They also point out the neglected area of professional development after the courses have been completed, when students often need support in application. The tenth chapter, “The Practice Architectures of Inclusive Education in Two African Contexts,” is authored by Anabanithi Muthukrishna, who explains “practice architectures.” Muthukrishna draws on Stephen Kemmis and Peter Grootenboer’s theory, which posits that practice architectures are composed of three spaces: semantic, physical, and social; each gives meaning to and allows examination of teaching.[1] The local context is key to gaining a deeper understanding of inclusive education in the Global South. Maria Kett, Marcella Deluca, and Mark T. Carew coauthored chapter 11, “How Prepared Are Teachers to Deliver Inclusive Education: Evidence from Kenya, Zimbabwe, and Sierra Leone.” This chapter summarizes a study of the efficacy of teachers in the three countries through six themes. Overall, while the teachers are willing to embrace inclusive education, training and resources are necessary.

“Situated Perspectives: Child, Family, and Community,” which consists of five chapters, is the third and final component of part 2. Chapter 12, by Paul Lynch and Melissa Gladstone, is “Exploring Ways to Support the Infrastructure for early Childhood Development: A Study of Children with Visual Impairment in Malawi.” The authors focus on the importance of involving family and the community in education and of paying attention to the wider community systems in which the child learns. Figure 12.1, on page 231, is a helpful diagram showing the concentric circles of systems, from the microsystem to the macrosystem. Garett Dart, Yonah Matemba, and Jack Gunnell are the coauthors of the thirteenth chapter, “Inclusive Education for Learners with Albinism: Malawi, Zambia, and Botswana.” While the cultural meaning of albinism results in threats to the safety of students with albinism, policy, strategies, and intervention can lead to educational inclusion and mainstreaming. Contextual appropriateness is supremely important. “Listening to Children with Disabilities: Voices from Uganda and Malawi,” the fourteenth chapter, is authored by Mary Wickenden. The voices of children, especially children with disabilities, have been excluded but are now being sought, as they should be, Wickenden says, for effective research and policymaking. She cautions that although the voices of children are now being used, “noticeably absent from the consultations are children with the most stigmatized impairments: communication, severe cognitive, behavioural and multiple difficulties” (p. 284). The fifteenth chapter, by Tehminna Hammad, is “Mothers as Educational Enablers: Examining the Journeys of Young Women with Disabilities in Pakistan.” Hammad explores the potential effect of mothers on the educational path of their daughters. The context of patriarchy, whether strong or weak, is especially important to consider.

The final chapter is a brief conclusion, authored by the book’s three editors. The conclusion focuses on two issues, the first of which is “today’s challenges.” The authors point out disability as a “significant constant factor” within rapidly changing global patterns of rural-urban migration along with conflict and environmental disasters (p. 310). Against this scenario, disability remains neglected in research. The second issue is “negotiating a balance in power between Northern and Southern institutions” (p. 311). Here, the authors acknowledge the imbalance of access to information, data, and communication—usually taken for granted by northern institutions—between the Global North and South and call for ongoing communication and debate, both between the North and South and also among southern entities.

The overall message of the essays is the importance of including community and context in comparative research investigations. In this way, the essays echo and amplify the important themes of Shaun Grech and Karen Soldatic’s edited compilation Disability in the Global South and are a useful companion to that collection. The summary of key points and discussion questions that follow each chapter make the book a great choice for the undergraduate classroom. Overall, this collection is an important contribution to disability studies in the Global South and to the literature on inclusive education.

Note

[1]. Stephen Kemmis and Peter Grootenboer, “Situating Practice in Praxis: Practice Architectures and the Cultural, Social, and Material Conditions for Practice,” in Enabling Praxis: Challenges for Education, ed. Stephen Kemmis and Tracey J. Smith (Rotterdam: Sense, 2008): 37-62.

Citation: M. Lynn Rose. Review of Singal, Nidhi; Lynch, Paul; Johansson, Shruti Taneja, eds., Education and Disability in the Global South: New Perspectives from Africa and Asia. H-Disability, H-Net Reviews. July, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56514 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Vicky Long. Review of Bohata, Kirsti; Jones, Alexandra; Mantin, Mike; Thompson, Steven, Disability in Industrial Britain: A Cultural and Literary History of Impairment in the coal Industry, 1880-1948.

Kirsti Bohata, Alexandra Jones, Mike Mantin, Steven Thompson. Disability in Industrial Britain: A Cultural and Literary History of Impairment in the Coal Industry, 1880-1948. Disability History Series. Manchester: Manchester University Press, 2020. Illustrations. 320 pp. $120.00 (cloth), ISBN 978-1-5261-2431-9

Reviewed by Vicky Long (Newcastle University) Published on H-Disability (July, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=55959

The foundational texts of disability studies often present industrialization as an unmitigated disaster for disabled people, establishing a society that marginalized and excluded people with impairments from the workforce. This monograph evolved from a Wellcome-funded project led by Professor David Turner and the late Professor Anne Borsay, which drew on historical research from three British coalfields (northeast England, central Scotland, and south Wales) to closely scrutinize the relationship between disability and industrialization. I note here my participation in the project’s research team though not in the authorship of this book. Like its preceding companion volume (David Turner and Daniel Blackie’s Disability in the Industrial Revolution: Physical Impairment in British Coalmining, 1780–1880 [2018]), it offers a fine-grained analysis of how understandings and experiences of disability were affected by industrial development. Taking us up to the nationalization of the coal industry and postwar settlement, which introduced a no-fault compensation system for disabled workers, this book interrogates the impact of industrial expansion and contraction on disabled workers, the mechanization of work, and the introduction of an adversarial system to compensate workers impaired through disease or injury from undertaking their work. Entwining historical research with insights from literature, the authors concur with earlier writers that industry, specifically the coal industry, played a pivotal role in shaping the history of disability in modern Britain. However, they present a nuanced argument about the nature of this relationship, bringing to the fore the significance of time and place.

The coal industry provides the case study for this research, because, as the authors explain, no other industry “generated as large a number of disabled individuals on a daily basis” (p. 249). Impact and crush injuries arose through haulage and falls of rock and coal, while the constant pressure and impact of working positions led to “beat” hand, knee, and elbow, impairments arising from painful localized inflammation and infection. The dust generated through mining, meanwhile, caused the chronic lung disease pneumoconiosis, while poor underground lighting was thought to be a leading cause of miners’ nystagmus, an involuntary oscillation of the eyeballs. The relative level of risk miners faced fluctuated over the period covered by this book, partly in response to wage systems and working hours and partly following mechanization and electrification of the industry, which generated more dust and accidents, respectively. Risks also varied by region: the heaviest burden of pneumoconiosis, for example, fell in south Wales. When the coal industry flourished, impaired workers could often secure light work at the surface. However, impaired workers found fewer opportunities when the industry contracted in the interwar years, while many employers purged impaired workers from their workforce following the introduction of workmen’s compensation in 1897, viewing them as a liability. The scheduling of nystagmus and pneumoconiosis as diseases meriting workmen’s compensation was partially a victory for miners’ unions but also generated formal and informal bars to work in the coal industry for miners affected by these conditions. These men were deemed “human derelicts” and “the living dead,” not because they were disabled but because they were unable to secure employment in a mono-industrial community and were sometimes only awarded partial compensation (pp. 49, 52). Nor was disability confined to miners: the authors show how a combination of poor housing, heavy domestic labor, and reproductive injuries generated impairments among women in coalfields communities.

A chapter on medical care and rehabilitation suggests that coalfields disability was medicalized but also reveals that this was largely at the behest of miners and their unions. General practitioners were miners’ first port of call, but high caseloads led in many cases to perfunctory, conveyer-belt style care. Medical aid societies, friendly societies, and works clubs supplemented this care, funded by contributions from employees, and, in some instances, employers too. Miners in south Wales had good access to hospitals in coalfields areas, while miners in the northeast of England and central Scotland were more reliant on city hospitals. Yet medical treatment for much of this period was largely ineffective. The only treatment for nystagmus was to remove the sufferer from his work, while care for pneumoconiosis sufferers was palliative, not curative. Doctors, meanwhile, primarily assessed patients to determine their eligibility for compensation. Amputation was often the end result of complex fractures and crush injuries, due to the limited skills of surgeons and orthopedists, although good prosthetic limbs and assistive devices might enable a miner to keep working. By the interwar period, convalescent homes, supported by friendly societies, unions, employers, and the miners’ welfare fund, became increasingly medicalized with a growing emphasis on rehabilitation, fracture clinics, physiotherapy, and orthopedics.

Financial assistance was also crucial to miners unable to secure full wages following accident or illness. The authors sketch out the patchwork of financial support: community collections, charities, friendly societies, workmen’s compensation, permanent relief funds, and the poor law. Yet despite the breadth of provision, many impaired miners were compelled to rely on multiple forms of welfare to make ends meet, and provisions varied by region and period. Permanent relief funds, for example, which were co-funded by employers and workers, provided disablement benefits. In the 1890s, around 90 percent of workers in the northeast of England were members, whereas only 5-10 percent of miners in south Wales were members by the Edwardian period. This partly reflected a more consensual approach to industrial relations in the northeast but also the introduction of workmen’s compensation. The operation of this adversarial system was still influenced by regional politics, however: in the northeast, a joint arbitration committee sought to reach decisions on contested workmen’s compensation cases, while more cases were contested in south Wales and Scotland. Securing and retaining compensation was frequently demeaning and was fraught with uncertainty. Miners struggled to claim if their impairments could not be unequivocally ascribed to a workplace accident or scheduled disease, while employers could stop payments and require disabled miners and their unions to take their case back before the medical referee and, if necessary, arbitration committee and county court, a practice condemned by miners’ unions for conveying the impression “that the injured person is a thief and getting money by false pretences, or that our people took a pride in getting mutilated” (p. 190).

The introduction of workmen’s compensation was pivotal in the politicization of disability in this era, the authors contend. Non-union members were disadvantaged in this process; without recourse to the union’s negotiating skills or legal representation, they had to rely on the goodwill of colliery officials. Yet union members were also at a disadvantage relative to union staff, with little recourse if they were unhappy with the assistance provided. Unions sought to influence the political process by supporting the election of miners’ members of Parliament and procured technical expertise to aid lobbying for compensation.

Two further chapters provide fresh perspectives on understandings and experiences of disability in coalfields communities through a spatial and literary analysis. Focusing on space brings to the fore the centrality of miners’ homes, a liminal public/private space, in which impaired and convalescent miners were often moved downstairs into the more public area of the home where they could interact more with family and visitors or sit outside on the front step or pavement, when weather permitted. Public spaces, such as parks and war memorials, became focal points for disabled miners to gather, yet public buildings were often not designed to be accessible. Representations of disability in coalfields literature, meanwhile, which are used throughout the book as a source, are interrogated more closely in the final chapter, revealing their pivotal role within this genre. The authors reveal how the moral and religious meanings ascribed to disability lost ground in twentieth-century coalfields literature; instead, disability revealed both the harm caused by exploitative capitalism and the mutualism and interdependency of coalfields communities. This body of fiction normalized disability and premature aging as intrinsic aspects of the life course in coalfields communities.

Fiction, in this respect, mirrored life: disability, conclude the authors, was indeed ubiquitous and normalized in coalfields communities, even though people with impairments were marginalized and isolated to some degree. Mining caused significant levels of impairment, but the coal industry also at times absorbed many workers with impairments into its workforce, for both moral and pragmatic reasons. Miners’ unions, meanwhile, devoted considerable time and resources to tackling the impairment and disability arising from the coal industry, so much so that this became a core component of their work, underpinning the campaign for nationalization. Further historical research could determine the relationship between disability and other industries, both in Britain and beyond. What this book does, however, is reveal the contribution history can make to disability studies. History is not there to generalize but to offer nuance and complicate our understandings and to emphasize the importance of context, place, and time. The authors tell not one story but many stories, highlighting distinct regional and national trajectories informed by the divergent pace of industrialization across the United Kingdom, variations in geology and geography, and distinctive religious, political, and industrial cultures. They succeed in bringing to visibility fragments of individual stories that remind us of both the difficulties and rewards of retrieving the voices of disabled people.

Citation: Vicky Long. Review of Bohata, Kirsti; Jones, Alexandra; Mantin, Mike; Thompson, Steven, Disability in Industrial Britain: A Cultural and Literary History of Impairment in the Coal Industry, 1880-1948. H-Disability, H-Net Reviews. July, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=55959 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Morag Allan Campbell. Review of Hewitt, Jessie, Institutionalizing Gender: Madness, the Family, and Psychiatric Power in Nineteenth-Century France.

Jessie Hewitt. Institutionalizing Gender: Madness, the Family, and Psychiatric Power in Nineteenth-Century France. Ithaca: Cornell University Press, 2020. 252 pp. $19.95 (paper), ISBN 978-1-5017-5331-2.

Reviewed by Morag Allan Campbell (University of St Andrews) Published on H-Disability (June, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=56116

In Institutionalizing Gender, Jessie Hewitt, assistant professor of history at the University of Redlands, California, uses contemporary publications, and periodicals and archive material from Parisian hospitals, to explore gender and power relations in nineteenth-century French psychiatry, and to uncover the ways in which doctors not only defined rationality and cure in terms of expected gender values, but also played a part in cultivating those gendered expectations. Although the six main chapters follow a chronological path through the French asylum system in the nineteenth century, the author’s aim is not to offer a history of French psychiatry during this period. Rather, Hewitt’s study takes us on a journey through “particular moments and clinical contexts” that especially reflect the gendered nature of psychiatric doctrines at this time, and also key points where she identifies significant shifts in ideas and practices (p. 14). Broadly, the first three chapters explore these gendered elements of psychiatric theories and the gender-based principles underpinning moral treatment. The second half of the book explores the demise of moral treatment and psychiatry’s move away from belief in what Hewitt describes as “the healing power of bourgeois gender and family values” (p. 17).

Chapter 1 takes as its focus the ideas of the celebrated “founding ‘fathers’” of French psychiatry and looks at how assumptions about gender roles were intrinsic to definitions of sanity and insanity and underpinned treatment and care (p. 19). During this early period, treatment was carried out with the expectation of cure and the reintegration of the patient into society—once the patient had resumed the display of appropriate gendered (and bourgeois) attributes and behaviors.

In 1838, legislation increased the power of doctors and established a French national system of institutional care of the insane. Many people, however, remained suspicious of the emerging psychiatric profession and its practices. Chapter 2 explores the controversy surrounding the “cold shower” treatment, also known as the “bath of surprise” (p. 46). This controversy, Hewitt claims, illustrates the clash between the medical professional and “shifting standards of bourgeois masculinity” (p. 48). Furthermore, the debate reveals how mid-nineteenth-century French alienists became aware of the need to appear honorable and to establish a respectable professional identity.

Much has been written about the female patient in asylum histories, but, in chapter 3, Hewitt turns our attention to some examples of women acting as practitioners rather than patients. Although women were not permitted to gain a formal medical education and qualifications and were therefore barred from taking up positions in French public institutions, many women actively worked alongside their husbands in private establishments and maisons de santé. There were even some female directors, or directrices, running their own private asylums. Hewitt introduces us to Marie Rivet, or Brierre de Boismont, who was brought up “amidst the mad” in her parents’ private asylum (p. 78). Madame Rivet went on to direct asylums of her own and to publish on the subject of insanity. Hewitt explores how Rivet, and others in her position, effectively engaged in “marketing the ‘angel in the house’” image, capitalizing on their traditional role as nurturers in the vie de famille set-up (p. 73).

Hewitt begins identification of the decline of moral treatment in French institutions in chapter 4, pointing to a number of scandals and press campaigns directed against the profession of psychiatry from the 1850s onward. Many of these campaigns focused on instances of sane people being committed to lunatic asylums as accusations of the abuse of medical authority in state institutions became a vehicle for dissent under the regime of Louis-Napoleon and later in the nineteenth century. Such campaigns caused alienists to begin to question the value of the asylum as places of care. Hewitt also highlights how contested asylum commitment cases reveal complex family dynamics and, in particular, a shift toward rationality as the seat of authority and changes in the nature of patriarchal power.

In chapter 5, Hewitt traces the profession through dramatic events of 1870 and 1871, arguing that psychiatric practitioners not only struggled on through the months of siege and civil war but were able to some extent to turn the situation to their advantage, using it to legitimize their authority and affirm an essential position in the new republic. The changed political order, however, presented a new environment, one in which ideas about the hereditary nature of mental illness were taking hold, undermining faith in “gender-based treatment” (p. 140).

By the end of the nineteenth century, doctors and the public alike had lost faith in the principles of moral treatment as physical explanations for mental illness became dominant, and efforts to clear the asylums of their seemingly incurable populations were instigated. The final chapter explores proposed alternatives to the asylum system, including schemes such as “family colonies” wherein patients were placed with a host family for treatment, and the opening up of asylums to allow free movement of patients while still under psychiatric care (p. 157).

While moral treatment and gender-based ideas about insanity were certainly not exclusive to France, Hewitt argues that the period of shifting power dynamics following the French Revolution created a unique environment for introducing innovation in medical treatment and practices on a wide scale. Her observations offer an intriguing insight into French psychiatry and institutions during the nineteenth century and, as she claims, reveal much about the construction of gender within the family in France at this time, a period when adherence to bourgeois gender values and an appearance of rationality had a key role in establishing respectability and authority.

Throughout the book, Hewitt argues that there were inherent contradictions in the beliefs central to moral treatment. While bourgeois family values could be the cure for mental illness, the family itself and the expectation for those within it to adhere to these values could often be the cause. Women who rejected the role of “angel in the house,” for example by wanting to find careers outside of the home, or not wishing to have children, could find themselves classed as mad; yet women were also seen as susceptible to madness on account of the very behaviors expected of them, such as pregnancy and childbirth.

While Hewitt regards women as being more oppressed than men by the asylum system, as they generally did not have the authority or means to contest their diagnoses, she also stresses that men could also be vulnerable if they did not live up to cultural expectations—the rational man was heterosexual, married (preferably with children), and was involved in a financially secure, professional career. However, the pressures of maintaining such a life could themselves cause men to crack. The performance of appropriate familial roles was therefore not only the cure, but also one of the “key sources” of mental illness (p. 41).

Patients and doctors were involved in the two-way process of the “mutual performance of the moral treatment,” which drew on shared understandings of gendered roles (p. 35). Notions of masculinity and femininity were open to change, and this performance locked medical men in the grip of gendered expectations as much as the patients.

Hewitt’s study of Marie Rivet, and other directrices, offers another contradiction. While rationality and self-control were associated with masculinity and women were regarded as inherently irrational, the example of the directrices shows that, when placed among irrational men, women were able to secure a distinctive place of authority. Such women were able to secure and exert power in ways that exploited the very norms which restricted others.

Institutionalizing Gender invites the reader to rethink ideas about gender within the asylum setting, while revealing as much about the nature of the family in France during this period as it does about French psychiatry. It offers a perspective that goes beyond the study of the relationship between female patients and their psychiatrists—indeed, Hewitt has consciously moved away from this and allocates more space in the book to men and male doctors. However, the study of Marie Rivet and the directrices who subverted the very ideas of masculine rationality to take authority themselves offers a refreshing take on the history of women in the asylum setting.

Institutionalizing Gender is highly readable. It is also widely accessible as it is published as part of the Sustainable History Monograph Pilot, making the e-book editions of this book available as open-access volumes.

Citation: Morag Allan Campbell. Review of Hewitt, Jessie, Institutionalizing Gender: Madness, the Family, and Psychiatric Power in Nineteenth-Century France. H-Disability, H-Net Reviews. June, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56116 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Elsbeth Bösl. Review of Williamson, Bess; Guffey, Elizabeth E. eds. Making Disability Modern: Design Histories.

Bess Williamson, Elizabeth E. Guffey, eds. Making Disability Modern: Design Histories. London: Bloomsbury Visual Arts, 2020. 264 pp. Ill. $26.95 (paper), ISBN 978-1-350-07042-4.

Reviewed by Elsbeth Bösl (Universität der Bundeswehr München) Published on H-Disability (August, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=56237

The primary topic of this book is how the experiences and meanings of disability have been shaped by design. By design, the editors, design historians Elizabeth Guffey and Bess Williamson, mean the processes of planning and making the material world. Guffey is a professor of art and design history and head of the MA program in art history at the State University of New York, Purchase College. Williamson is an associate professor of art history, theory, and criticism at the School of the Art Institute of Chicago. Their edited volume brings together thirteen individual papers presented at a conference at the Center for the History of Business, Technology, and Society in Wilmington, Delaware. The center organizes historical conferences while housing a major research collection documenting the history of American business and technology.

The book is structured around three sections that each begin with an editor’s introduction that provides linkage between the papers. Section 1 focuses on pre-industrial times, with an article by Nicole Belolan outlining the ingenuity and creativity which persons with gout, particularly those with substantial financial means, applied to improvise daily-use items as their assistive technology. It was they, as well as their families, relations, slaves, or local craftspeople who devised and created the items necessary for the care of and use to family members who lived with gout. As impairments were common, Belolan argues, and mainly a matter of the close social environment, it depended on this environment how impairment was experienced, and if or in what ways it was disabling. Disability in the pre-industrial period, in general, is presented here as reflecting individual circumstances and environments as there was no overall, top-down state or government approach. Cara Kiernan Fallon’s study follows chronologically. She investigates the usage of canes in the nineteenth century. These were, in contrast to crutches and other walking aids, items of high fashion, especially among the American middle classes and particularly since mass production allowed for a wide range of designs and affordable prices. Fallon shows that canes only fell out of fashion at the turn of the century, while at the same time canes became standardized medical devices. This expertly written essay gives an impressive example of the interpretative flexibility of technical objects.

Aparna Nair’s account deserves to be highlighted because she so skillfully demonstrates not only how colonial narratives controlled the experience of deafness, but also how certain local actors under this regime actively experimented with signing. Nair found that the mass-produced technological aids imported from Britain and imposed on deaf or hearing-impaired people were used mainly by better-off persons who began to reject signing. Colonial rule, the sale of mass-produced products, and oralism went hand in hand. However, the products in question were not diffused through Indian colonial society, where many people continued to adhere to sign languages and hearing aids that were perceived as superfluous in everyday live.

The fourth essay in this chapter, by Caroline Lieffers, relates to a point that Guffey and Williams make in the section’s introduction: the industrial age brought up new disabilities or, as has been argued before in early disability studies scholarship, actually created disability in the first place. While the latter may be contested, it is certainly true that industrial production, factory life, and the growth of cities, many with unhealthy living conditions, caused a high level of health problems and lasting impairments. Medical innovations at the same time ensured that a growing number of people survived injuries and illnesses, but with lasting health issues, thus also creating impairment. Such medico-technical innovations also accelerated the interventionist medical approach to impairment. With the industrial age came the paradigm of rehabilitation. Lieffers discusses medico-technical interventions by the example of workers injured in the construction of the Panama Canal. There, prostheses were much more than devices to substitute for bodily functions. Injured workers’ damaged bodies represented both an ethical and a political problem to the canal administration as they reminded the public of the expansionist policies of the United States and its cost in lives as well as of the failure of the project. Prostheses were distributed to mask these failures and losses. Lieffer’s essay is special in that she structures it along four biographies of prosthetic users.

Section 2 is less coherent in approaches and topics. The contributions vary in substance and sophistication. Of positive note is Elizabeth Guffey’s contribution on British architect Selwyn Goldsmith (1932-2011) and the different editions of his seminal book, Designing for the Disabled (1963). Guffey has written extensively on Goldsmith before. Here, she highlights the differences between the US and UK approach to design in relation to disability. In the United States in the second half of the twentieth century, disability policy was significantly more about civil rights than in Europe and accessibility was the overall paradigm, demanding that all persons with disabilities should participate independently in everything and thus be thoroughly normalized. The British welfare state took a different angle. In Britain, as in many other European countries well into the 1990s when the civil rights and inclusion approach took root in Europe, disability policy was focused on social security, rehabilitation, and care. The ideal of the British welfare state was to issue care and aids to those who needed them, including a very special mobility aid, the Invacar, and other “special” technologies. In many European states, such as the United Kingdom, France, the Netherlands, Denmark, and both the Federal Republic of Germany and the Democratic Republic of Germany, there was a strong intent to integrate persons with disabilities into society through medical, vocational, and social rehabilitation. It was firmly believed that this was best done by special institutions and by things made especially for “special needs” people, and that individual people needed help to adapt to the ways of “normal” societies.

This integration-by-separation approach was very manifest in Het Dorp in the Netherlands, an accessible village with a lot of special care and training facilities built only for a very specific, limited (and promising) group of people with physical impairments. Wanda Katja Liebermann points out in her essay on Het Dorp that the idea was to turn persons with disabilities into what were regarded as functioning people. They were meant to adapt to the modern world. This world, the built environment, and its living conditions were not questioned in general. Disabled people were offered special facilities and special places where they were expected to fit in. This approach was still very different from the ideal of an inclusive society today where we strive to assess the conditions and environments in the world to see if all people have a chance to participate. Debra Parr then writes about chemical sensitivities and air pollution and the repercussions of modernist planning and building. Kristoffer Whitney looks into the design of the National Technical Institute for the Deaf in Rochester, New York. It was built at a time when special education in the United States was coming under political pressure and integrative teaching was being promoted within the civil rights movement. Whitney points to how the building manifested the conflicting but equally top-down policies of providing safe and effective spaces for deaf students and their inclusion in the world of the hearing.

Elizabeth Guffey rounds the section off with a study on an outstanding assistive device, the Swany Bag, a suitcase-like block with a handle on four 360-degree wheels. This invention is used by persons faced with challenges in walking and balancing in order to stabilize themselves. The Swany Bag is remarkable, because, as Guffey puts it, it facilitates hiding a condition in plain sight. And this is exactly what it was designed for, by a Japanese user who needed to make his walking disability disappear from society’s gaze. The Swany Bag is thus a way for disabled people to adjust to the Japanese cultural norm of invisibility and still participate in daily public life.

Section 3 moves on to more recent times and emerging technologies. As the editors note in their introduction to the section, persons living with a variety of conditions have long been pioneer users of new technologies. Electronic navigation of electric wheelchairs might be just one example, albeit one where the impetus for use came from doctors and rehabilitation experts. But think of the early use of the SMS and messenger apps by persons hard of hearing. This example points directly to disabled persons’ choices and spirit. I would have very much liked to read more about that—about tinkering, making do, adjusting to new digital technologies and media according to one’s wishes and needs. This would have been an excellent opportunity to explore relations between innovation by usage, agency, and digitalization.

Jennifer Kaufmann-Buhler’s essay on the design of personal computers, however, focuses mostly on the new injuries and impairments that work at hardware stations, such as desktop computers, instigated. In a way, her article pairs well with that by Lieffers as they both point to the ambivalent potential and the unintended negative consequences of new technologies. Elizabeth Ellcessor’s paper on personal emergency response systems (PERS) is interesting from a technological point of view as she demonstrates how these were designed, how they worked, and who used them and why. She points out that these systems were, in a way, predecessors of today’s wearables, monitoring and self-enhancement devices. She also argues that PERS can be seen as devices for surveillance—often bought by relatives who wanted to track and monitor their elderly family members. What is striking about the piece, however, is that it teaches us how disability approaches are bound to cultures and nations. Ellcessor writes extensively about a US television advertisement for PERS and on how its line “I’ve fallen, and I can’t get up,” as well as the actress who spoke it, became part of US popular culture. The line became a highly popular saying and was selected as statement of the year by Time magazine, and all this while it actually mocked old age and disability. In the process, the device, its users, and, more broadly, disability and old age, were ridiculed. This whole phenomenon, however, was utterly culture-specific. I have never heard of the advertisement nor of its manifestation in popular culture. So, had I ever heard the line in a pop song or elsewhere, I would not have noticed its reference to PERS and would not have known that it mocked disabled and old people.

Next, Bess Williamson’s paper nuances the section’s argument by showing that disability can actually be used as a marketing strategy and feature for, in this case, 3D printing of prosthetic devices. But as with the PERS and many of the other devices present in this volume, design here is understood as a remedy for disability, as a problem solver and as something that eliminates something considered undesirable. So despite all its high-tech qualities, 3D-printing is, or at least is being presented as, a very traditional anti-disability technology.

The section closes with an essay by Jaipreet Virdi which in a way diverges from the others, as it analyzes the use of digital technology in historiography and public history. Virdi writes about certain technologies and how they can bring up new meanings of disablement and create new ways of access and maybe of agency, but also about how the humanities themselves are part of the construction of disability within the academic world (an entanglement that is long known but rarely studied by those who, as disability historians, are immensely part of the entanglement). Her study is both an analysis and a meta-analysis of an application. This is of methodological importance to historians of disability and public history, of which she herself is one.

The contributions are shaped by a social-constructionist perspective typical of disability studies which the editors expound in their introduction. Neither disability nor access just happens. The editors argue that, when they address everyday technologies and architectural features as either barriers or accessible spaces and devices, activists, designers, experts, tinkerers, and users define disability as a phenomenon emerging from the material environment. Thus, spaces, facilities, or services can be interpreted as both the reason for disabilities but also as the key to inclusion. Apart from that, the political inscribes itself into artifacts and designs; these become politically charged. So material culture, spaces, and all kinds of artifacts as well as the ways these are used are products of political contexts and are themselves factors that influence political discourse and decision-making.

The contributions bring together many themes: gender, ethnicity, disability, and social class. Some are intersectional by study design. It is nice that the contributions do not cover only US topics, although this is the main regional focus. Other articles focus on disability regimes in Japan, the Netherlands, colonial India, and the UK. Perspectives vary between material studies, art history, disability studies, design history, and cultural history. If readers want to differentiate according to the type of disability that is being written about, then it is noticeable that the volume is predominantly about objects and spaces associated with physical disabilities, especially walking disabilities, and sensory disabilities.

While some contributions focus on critique, others adopt more descriptive narratives. While some contributions focus on one or more particular artifacts or spaces, some have a more top-down view. The volume is nevertheless widely coherent. The three sections of the book reflect a strategy of periodization. The editors argue that in the eighteenth and nineteenth centuries, before the onset of industrial mass production, all artifacts were handmade and highly flexible as they were created specifically to accommodate an individual’s needs—made mostly by families, neighbors, and local craftsmen who were well acquainted with an individual’s situation. Disability, the editors argue, and the devices invented and crafted to serve the needs and wishes of their users, were rather normal in the sense of everyday life. When standardization and mass production replaced those earlier flexible approaches—a long process that is still ongoing in many respects—there was less and less room for nonstandard bodies and their needs or abilities. In the nineteenth century, the notion appeared that bodies and persons who were now perceived as different, non-functioning, or pathological in some way had to be cured or fixed with technical aids. Functional impairments were increasingly seen as pathological deficits and problems that needed to be solved by doctors, therapists, and teachers. This resulted in new institutions and products. People were increasingly sent to places outside the home to be treated, trained, or cared for. Disability was thus more and more removed from society—under the idea of bringing disabled persons back into society after functional rehabilitation. Paradoxically, rehabilitation and integration were meant to be achieved by separation. In Europe, I may add, this paradigm lasted longer than in the United States where, after the Second World War, a civil rights approach to disability took over. As far as the assistive devices were concerned, mass production and welfare-state allocation of aids did not entirely stop disabled persons and their environments from adapting, tinkering with, and improving the devices according to what worked best in their daily lives. Standardized mass-produced devices are often used as the basis for further work in order to make them more suitable through adaptation. The third era, reflected by the third section, is the digital age. The editors describe it as a new period of design with new relationships between people and products.

The editors offer their interpretation of modernism as a thematic clasp for the individual essays. By modernism they mean the aesthetic style and mind-set that, among other things, promoted functionality, rationalization, and standardization. It came with both the neglect of what the editors call nonstandard persons in mainstream architecture, technology, and planning and resulted in an abundance of “normal” yet inaccessible spaces and technologies as well as in special inventions and concepts addressed specifically to those who were, for one reason or another, regarded as nonstandard. The modernist approach in design resembled the approach in science and medicine: to devise specific solutions for “different” people in order to heal, overcome, or alleviate this different-ness. There have been a growing number and variety of special products for disabled persons in the countries studied. In other words, the focus on the standard made some designers and architects consider how they could accommodate those who were isolated, marginalized, or disabled by these standards, a realization, one may add, that led—somewhat paradoxically, particularly in Europe—to yet another wave of standardization by building norms.

The editors argue that all of the essays contribute to a deeper understanding of modernism, modernity, and disability by studying the relations and interdependencies of disability experiences and design. Yet the individual contributions could have referred more directly and openly to the theoretic framework of the volume.

The editors have taken a great deal of editorial care. Most contributions are structured in a clear way. At the beginning, topics, questions, and hypotheses are presented clearly in almost all contributions. Frequently, sources and methodological requirements are also introduced critically. All papers are read with relative ease and are visually quite appealing although the font size is rather small. The contributions have sufficient notes and bibliographies. There is an index, but unfortunately the individual authors are not introduced.

The book is certainly appropriate for referencing, but also for teaching. Several individual contributions feature high-quality research and will certainly be of importance for other studies in disability history as well in material and design studies. The introduction has textbook quality and appears very suitable for courses on disability history. For example, it includes important comments on terminology as the editors present terms such as assistive technology, access, barrier-free building as well as universal design and inclusive design in their respective historical contexts.

For historians of disability it will be particularly interesting that Guffey and Williamson present another model for disability, the design model of disability. It is distinct from both the social and the medical models as it focuses on the role design plays in the construction of disability and the shaping of the meaning of disability. In the design model, disability is seen as “a phenomenon that can be treated or ameliorated through digital or material things” (p. 5). Design defines both ability and disability along with categories of function and normalcy. Guffey and Williamson highlight that the design model is aware of design and disability being contingent and totally historical. Design choices are contextual as are the relations between design and disability. The editors also point to the weaknesses of the model and the discrimination it implies. First, they highlight the ambivalences of design. Design can create barriers and prevent people from participation, but design also provides solutions that enhance participation. There is both a wide range of objects and features of the built and digital environments and an equally wide and ambivalent variety of effects and outcomes. Secondly, they warn against techno-ableism that may come with an overly strong focus on technology as people get pressured to adopt any new technological devices available and not to rely on the help of other people. However, the design model of disability is not explored openly by the authors, so it is a little difficult to deduce how the essays’ findings add up to or fit in with this model. But to cut to the chase, this anthology can be recommended to researchers and students in disability history.

Citation: Elsbeth Bösl. Review of Williamson, Bess; Guffey, Elizabeth E., eds., Making Disability Modern: Design Histories. H-Disability, H-Net Reviews. August, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56237 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.