Author: Simon Jarrett Reviewer: Geoffrey F. Reaume

Simon Jarrett. Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day. London: Reaktion Books, 2020. 304 pp. $35.00 (cloth), ISBN 978-1-78914-301-0. 

Reviewed by Geoffrey F. Reaume (York University, Toronto) 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=56404

Simon Jarrett’s new book will strike many potential readers as offensive given that the title, and text throughout, contains a word that is universally detested as an insult by people with mental disabilities upon whom it has been imposed. Readers will find other similarly detestable words that have a history of cruelly isolating people with intellectual disabilities. There is no doubt, however, that Jarrett’s emphasis is to understand the meaning behind this word (and similar terms), how it evolved, and how it impacted people over a three-hundred-year period. In doing so, his work is deeply humane, not least because of his clarity in denouncing the emotional and physical cruelties inflicted upon people labeled “idiots” as well as the vicious cruelties of a society that eventually imprisoned those deemed mentally different, for simply being different. Thus, his book is not a “balanced” treatment with meandering qualifications that leaves the reader wondering, “what does the author think about his topic?” It is instead a rigorous exposition of how grotesquely prejudiced beliefs about mental disability have had such a devastating impact for those who had to live with the consequences.

In his introduction, Jarrett underlines that a key point of his book is that people with intellectual disabilities are “simply humans, without having to jump through a series of meritocratic hoops before society is prepared to accept them as such” (p. 12). In doing so, he points out how people with intellectual disabilities have been marginalized within the historiography that this study helps to redress. The author examines intellectual disability as a fickle “idea, one which changes over time” while the lives of people directly impacted by this evolving concept are the book’s prime concern (p. 16). Jarrett explains his use of the term “idiot” and similar terms that are universally regarded as insulting: “To avoid ahistoricism, and to capture important truths about periods in history, the terminology in use at the various time periods described is used; this includes idiocy, imbecility, mental deficiency, moron, mental handicap and so on. None of these of course is acceptable terminology outside their historical context in public discourse today, all having become terms of abuse or anachronistic” (p. 18).

The book’s first section, comprising three chapters, focuses on the period from 1700 to 1812, for which Jarrett describes the wide range of popular and legal concepts around idiocy and imbecility. He notes that during late medieval periods in English history—where his book is primarily, though not exclusively, geographically situated—the ruling class viewed illiterate masses as “idiotic” given their low social status. Gradually, legal thinkers and the wider public, but not medical doctors, began to narrow down to whom this term was, or was not, applied. By the beginning of the eighteenth century, a person labeled as an “idiot” was deemed below those defined as an “imbecile” in terms of mental capacity. As Jarrett notes, “the legal profession simply confirmed what the public already discerned”; that is, it was just “common sense” to determine who was an “idiot” (p. 40). The author effectively uses legal records to show that people labeled “idiots” were viewed as part of the community from which they came and were seldom sent to prison for criminal offenses during the 1700s. Instead, local people who knew and liked the accused, whether in a domestic setting or workplace, would vouch for them in court, helping to secure acquittals for crimes deemed less serious. This was at a time when the legal system was merciless toward the poor and disenfranchised. The author is quick to point out, however, that people accused of violent or serial crimes, no matter what their mental capacity, were seldom shown leniency. Though he does not romanticize their place in eighteenth-century English society, noting harassment and cruelties inflicted on them, Jarrett argues convincingly that people deemed “idiots” “remained at the heart of communities: challenged, vulnerable, perceived as different and lacking capacity, but with sufficient personal capital in the eyes of others to be worth defending” (p. 53).

Jarrett researched a wide array of primary sources, including the already mentioned court records, but even more importantly for public attitudes of the time, books that recorded popular slang, jokes, and folk tales, all of which reveal how the term “idiot” came to be defined, not only as a category denoting diminished mental ability, but also as a way of dismissing someone regarded as irresponsible or infuriating in some way. It was also during the eighteenth century that the physical representation of “idiots” was popularized with caricatures of people with a vacant expression, drooling, open-mouthed, as shown in some illustrations in the book. This was at a time when people caricatured in this way often toiled primarily as unskilled workers and servants, with a minority in skilled jobs, though abuse from nondisabled people was all too evident. Jarrett argues that while being laughed at was “cruel and uncomfortable”, there were plenty of others besides those called “idiots” who were subjected to such taunts and that “a person was noticed, accepted as part of the social fabric” while being mocked (p. 81). This claim seems hard to sustain, however, since while Jarrett shows that plenty of nondisabled people were ridiculed, some were in a far better position to deflect insults or fight back than were others, such as those with mental disabilities. Jarrett also notes elsewhere in the book that first-person accounts of intellectually disabled people are not available from those derided in this way during most of this history, so we have no way of knowing their torments compared to those of their social superiors during the eighteenth century.

Jarrett concludes the first section of his book with a chapter on “racial ideas of idiocy” in which European travelers during the 1700s, convinced of their own superiority as white Christians, looked with scorn on indigenous people wherever they were encountered across the globe. The insouciance with which various indigenous people regarded foreign interlopers upset European egos that expected deference and wanted to be looked upon with awe. White travelers who wrote about their experiences began to compare indigenous peoples’ indifference to their presence as evidence of “idiocy” similar to that with which they regarded those who had been so categorized back home. As this travel writing was influential back in Europe among elite thinkers who were developing concepts around race and difference, and as European empires continued to expand, “domestic ideas of idiocy and racial encounters abroad became ever more entangled” (p. 104). Related to this, just as concepts of guardianship had evolved in places like England during the eighteenth century to protect people deemed “idiots” from exploiters (e.g., inheritance-related greed by predatory marriage partners), so too the concept of guardianship was extended by the racist thinking of imperialists who rationalized overseeing non-Europeans for their own supposed benefit. This was further subdivided based on three types of presumed racial and mental development by European-based writers: people derided as “savage” were defined as “a child and an idiot”; people derided as “barbarian” were defined as “a youth and an imbecile”; the exalted “civilized person,” who was invariably a white European, was cast as an “adult with perfect faculty of mind” (pp. 114-115). As Jarrett poignantly states: “Idiocy was no longer a joke. Skin colour and racial designation had started to become determinants of mental faculty for the people of the world” (p. 119). All of this was at a time when medical doctors had shown no serious interest in people labeled “idiots” given the belief in their static mental state, and who were therefore viewed as being devoid of medical remedy. This idea was about to change.

As the term “idiot” became globalized by Europeans, so too did the direct consequences of this label become even more intensely punitive than ever before. In the second and longest section of the book, comprising four chapters, Jarrett focuses on the 1812-70 period, during which people called “idiots” were taken seriously by medical professionals who came to view their previously commonly accepted status in the community as instead a danger warranting scientific scrutiny, social exclusion, and incarceration. Jarrett notes that as medical officials in France and later England, began to come up with classification systems as a sign of their supposed scientific prowess in understanding “idiocy,” they nevertheless continued to perpetuate earlier ideas, with one significant exception: the idea that an “idiot” could be dangerous and degenerate, warranting state intervention under the direction of medical officials. This eventually led to the nebulous term “moral imbecile” to categorize a supposedly innocuous-looking person who was without moral scruples or conscience. “Idiocy” began to be subdivided into various categories under which the all-knowing medical professional could discern who was what kind of “idiot,” that is, harmless or dangerous. In time, all categories came to be seen as ripe for incarceration. Jarrett is careful to point out that medical ideas around idiocy were challenged and ridiculed by other English professionals including some doctors who were themselves split on the issue of what they meant by “imbecile.” This intra-professional conflict significantly undermined medical claims of scientific certitude in the early to mid-nineteenth century. Yet the author also shows how, beginning in 1789 and increasingly in the early nineteenth century, doctors began to be called upon as “experts” in trials of people deemed “idiots.” This was crucial as it led to far greater and more consistent severity in judgments for the accused than before. A gradual coarsening of attitudes toward people deemed “idiots” was reflected as well among Romantic writers who, inspired as they were by the ideals of the French Revolution, did not extend their humanitarian impulse to those whom they saw as devoid of valiant characteristics that they deemed as essential to furthering a progressive polity.

These developments occurred when, from the 1830s, cultural ideas of idiocy were transformed into a general contempt for people deemed as such. People labeled “idiots” were increasingly viewed not as real people who were part of the wider community, as in the past, but instead as worthy only of condescending pity at best, or detestation and confinement. Charles Dickens’s scorn for people deemed “idiots” was evident in his writings, including his belief that they would be better off dead—a far cry from eighteenth-century popular culture, which Jarrett describes earlier. People deemed “idiots” were thus no longer considered a part of local communities by more people than ever before. Jarrett also makes clear that people deemed “idiots” were linked with subject peoples in the wider empire by asylum operators and colonizers who borrowed upon each other’s prejudices about those they governed to further classify and regiment both groups. This included the eventually discarded idea that moral treatment would “achieve discipline and control over troubled, and troubling, populations who would then live orderly, regulated and unthreatening lives” (p. 194). Mid-nineteenth-century proponents of scientific racism, such as Robert Knox and Arthur de Gobineau, equated notions about idiocy with the mental development of racialized people, a classification system that reached its most notorious expression with John Langdon Down in the 1860s when he coined the designation “Mongolian imbecile,” or “Mongolism.” This term was part of medical diagnostics for a century until it was dropped in 1965, by which time geneticists showed race had nothing to do with having trisomy 21. Jarrett argues convincingly that officials who ran nineteenth-century asylums and empires were linked through medical and racist imperialism in their respective and intertwined spheres of influence as well as in their exchange of ideas around “idiocy.”

The increasing marginalization of people labeled “idiots” by the mid-1800s through public and medical beliefs and practices led to their eventual large-scale confinement in prison-like institutions. Jarrett traces how concepts of citizenship espoused since the late 1700s by European and American writers left out those believed to be incapable of exercising their own rights. Neither the Left, which promoted the earning of civil rights through mental articulation of such a concept, nor the Right, where contempt was expressed for the illiterate masses who needed to know their place, had any desire to include people labeled “idiots” into their ideas for the wider community. This increasing exclusion of people labeled “idiots” from any place in society by activists of all political persuasions contributed to what Jarrett describes as “the drift to the asylum” (p. 235). Legislative changes, such as the 1834 Poor Law in England and Wales, led to a greater emphasis on institutional rather than community supervision for the poorest and most disabled members, leading to many being confined in regimented workhouses. The 1845 County Asylums Act led to mentally disabled people being viewed as a state obligation so that over the next several decades into the 1870s private and then public asylums for “idiots” were established all over England and Wales and were replicated in other jurisdictions. “Medicine had gained ascendancy over them and the power to identify, control and treat them. Society had turned its back on them” (p. 241), Jarrett writes. Thus, by the late 1800s, a conglomeration of medical, cultural, and legislative changes had led to people labeled “idiots” being systematically shunned, denounced, and imprisoned, a process that had wide support from across the political spectrum.

Having established the multitude of factors that led to incarceration in the first two-thirds of the nineteenth century, Jarrett’s third and final section of the book, comprising two chapters, quickly covers a sweeping 150-year period from 1870 until the first two decades of the 2000s. He begins this section with a discussion of the impact of eugenics policies on people labeled “idiots.” This includes discussion of Darwinian evolutionary concepts that linked animals with mentally disabled people, claiming to show the way in which certain people had reverted to earlier, primitive stages of evolution. Along with the labels of “idiot” and “imbecile” as supposed descriptors of mental status that have come to be universally despised as insults, a new term was coined: “moron.” This term designated a person who was rated as having a capacity above the preceding labels, but was similar to “moral imbecile” in regard to their supposed dangerousness and amorality. People with these labels attached to them were targeted for institutionalization, though some family members were able to care for their loved ones at home despite pressure to lock up their relative by medico-state officials. Britain’s 1913 mental deficiency acts solidified these prejudices as supposed scientific fact in a catastrophic way, as Jarrett makes plain: “The drive to incarcerate the deficient was relentless” (p. 269). Exploitation of inmate labor; filthy, wretched, crowded, abusive conditions in asylums; guardianship that reduced confined people to perennial infantile status—all took place under the guise of eugenic philosophies that were both punitive and moralistic, casting people labeled as “idiots” as a burden on society.

The most horrific impact of such thinking was, of course, under Nazi rule in Germany beginning in 1933, and in parts of Nazi-occupied Europe during World War II, which Jarrett briefly summarizes. He notes that while eugenics appeared to be discredited after 1945, this did not help people with intellectual disabilities in the immediate postwar decades, as they continued to languish in filthy institutions. The advent of Britain’s National Health Service only saw further marginalization as resources were diverted to prioritize able-bodied people, not the masses of disabled people in institutions. Jarrett makes clear what these post-World War II decades were like for intellectually disabled people locked up at this time: “The pervasive regulation and the ferocity of the punishments and treatment reflected not only the suffocating institutional moral corruption, and the dehumanization of the deficient patients, but a form of rage against a group who had come to be seen as inadequate humans and who needed to be somehow kept for their whole lives in a form of netherworld, leading useless, purposeless existences” (p. 284). With rising awareness of the rights of disenfranchised people, parents and disabled people organized against this oppressive system, including opposition to what advocates described as “the exploitation of patients in paid work” (p. 287). This gradual shift in tone supporting rights over repression was not uncontested, as eugenics ideas continued to be promoted among medical officials, even if not so clearly publicly expressed as in the pre-World War II period.

With continuing reports of abuse in state-run institutions, incarceration of intellectually disabled people began to be slowly rolled back in Britain, such as with a 1970 law that guaranteed education for all children in local areas, and a 1981 government report which advocated closing institutions in favor of community supports. Unfortunately, the austerity measures of Margaret Thatcher’s Conservative government (1979-90) and subsequent Tory and Labor successors, latched on to abuse reports as a way of promoting the removal of significant amounts of state funding from disabled people in large institutions without reallocating money in sufficient quantities to local communities. This process of de- or transinstitutionalization still saw people transferred to smaller institutions at the neighborhood level. As a result, many people who were discharged from discredited massive asylums to the community still ended up in institutions. While terminology changed, prejudices and inadequate resources continued in the daily lives of people with mental disabilities. Nevertheless, Jarrett concludes that the “great return” to the community of intellectually disabled people in the late 1900s had been “surprisingly successful” (p. 304). He also warns, however, that reinstitutionalization in the early 2000s may forebode ill for the future: “Is the murderous beast of the institution on the march again?” (p. 305).

At the beginning of this book, Jarrett notes that, in comparison to mad people, first-person accounts by people with intellectual disabilities are largely absent due to their widespread illiteracy for much of the three hundred years described in this study. Yet, at the end of the book, where he does note the importance of self-advocacy groups by people with intellectual disabilities in recent decades, he could have included more readily available first-person accounts from people who are the primary focus of this study. The lack of attention paid to activist efforts by disabled people themselves, while briefly mentioned, could have been expanded upon with more detail, and voices from those who, as Jarrett so rightly notes, have been historically excluded from discussions about themselves, might have been heard. This caveat aside, Jarrett’s book is an impressive, accessible, and richly illustrated study about a maligned group of people in disability history. He bluntly shows how the evolution of cultural, legal, and medical thinking transformed a general descriptor into a specific label to oppress an entire group of people who continue to live under the shadow of dubious ideas about “the disabled mind” that are still evident today.

Citation: Geoffrey F. Reaume. Review of Jarrett, Simon, Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day. H-Disability, H-Net Reviews. October, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56404 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Author: Marty Fink Reviewer: Jessie Hewitt

Marty Fink. Forget Burial: HIV Kinship, Disability, and Queer/Trans Narratives of Care. New Brunswick: Rutgers University Press, 2020. 214 pp. $29.95 (paper), ISBN 978-1-978813-76-2.

Reviewed by Jessie Hewitt (University of Redlands) 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=56289

Marty Fink’s Forget Burial incorporates often-neglected histories of caregiving into the history of HIV activism by linking early experiences of the epidemic to more recent narrative accounts of caregiving within queer and trans communities. As a media scholar, Fink puts a wide variety of sources in dialogue with one another, often to convincing effect. In the process, they highlight how archival investigations and curatorial practices have the potential to create intergenerational bonds and provide caregiving models for queer/trans people who did not personally experience the early years of the epidemic.

Central to Fink’s investigation is the insistence that disability forges community. Interdependence is a fact of life for disabled and nondisabled people alike, but individuals with HIV in the 1980s and 1990s were particularly attuned to the ways the state, the medical establishment, and the prison system all exacerbated their isolation and stigmatization. Chosen families, on the other hand, provided care and also received it in ways that exposed the cruelty of official neglect and indifference. As Fink explains, “I apply HIV histories to contemporary narratives about gender and disability: rather than trying to cure disabilities and eliminate bodily differences, HIV narratives offer queer and trans models for taking care of each other when we experience institutional harm” (p. 5). While the actions and inaction of those in power dehumanized queer/trans people with HIV, communities of care celebrated and reinforced one another’s humanity.

By focusing on caregiving as a form of activism, Fink centers the actions of queer/trans people of color, which have often received less attention than more spectacular types of public protest associated with majority-white activist groups. One salient example involves reframing the origins of safer-sex efforts in the 1980s. While some safer-sex initiatives eventually garnered official support, campaigns sanctioned by the state implicitly sought to discipline queer and trans bodies by focusing on abstinence and/or pathologizing promiscuity. Conversely, grassroots sex education invented “safer sex as a caregiving response to HIV…. Creating and sharing medical information therefore became a form of care, and the distribution of this knowledge happened on the community level, bringing together lovers, professionals, and friends through the process of creating access to sex education” (p. 40). The activism of DiAna DiAna, a Black woman who began to provide safer-sex education and free condoms in her South Carolina hair salon in 1986, serves as a revelatory case in point. While DiAna’s efforts were appreciated within her community, Fink argues that she was regularly blocked from receiving state funds due to institutional racism.

Fink thematically links numerous types of primary sources in the process of constructing their argument. This is one of the book’s strengths. Yet I often found discussion of the words and deeds of historical actors more compelling than the literary analysis. For example, Fink argues that disability kinship communities formed during the early years of the HIV epidemic provide anti-capitalist and anti-racist models for prison abolition. The thrust of this argument focuses on Octavia Butler’s 2005 vampire novel, Fledgling, and Jamaica Kincaid’s caregiving 1997 memoir, My Brother. While the exploration of these works is suggestive—particularly in the case of Fledgling—the experiences of HIV-positive individuals ensnared by the prison system is less thorough. Of course, as Fink points out, the isolation produced by incarceration makes it very difficult to uncover these stories.

Forget Burial is well worth reading. The most successful parts of this book take the reader inside the kitchens, bedrooms, prisons, art galleries, and hospital waiting rooms where people laughed, fought, loved, and sometimes died together. Fink makes a strong case that the early years of the HIV epidemic provide models for living joyously and communally despite the myriad ways capitalist institutions leave individuals to fend for ourselves. In the process of “unburying” the stories of historically marginalized people, Fink rightly and eloquently depicts disability as a generative force.

Citation: Jessie Hewitt. Review of Fink, Marty, Forget Burial: HIV Kinship, Disability, and Queer/Trans Narratives of Care. H-Disability, H-Net Reviews. October, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56289 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

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.

Rebekah Taussig. Sitting Pretty: The View from My Ordinary Resilient Disabled Body. New York: HarperOne, 2020. xiii + 237 pp. $25.99 (cloth), ISBN 978-0-06-293679-0. 

Reviewed by Nancy Hansen (University of Manitoba) Published on H-Disability (February, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=56114

When I was approached to write this review, I initially thought that Sitting Pretty would be yet another “tragic,” “brave,” “overcoming,” or “heroic” disability tome. However, I was happily and importantly mistaken. This autoethnography is a refreshing, realistic counternarrative to majority understanding of life from a seated position. To provide context, the author had an established social media presence @sittingpretty before writing the book. A wheelchair user and educator, Rebekah Taussig is letting the reader in on a personal knowledge journey that is by no means maudlin, harsh, or sentimental. Full of thoughtful insight and humor, the book presents a straightforward conversation beginning with disabled people’s cultural invisibility and representation. 

An American living in the midwestern United States, Taussig, the youngest of six children, acquired disability from early childhood. She talks about creativity in a nonconformist body that, particularly in one’s early years, is not different or strange, good or bad: it is simply your body. Taussig discusses the necessity for chronic creative approaches when the disability and impairment is not expected, or planned for, in the majority culture. Moving through adolescence, she carefully traces her gradual acclamation of the broader social trope of the “burdensome” or “problematic” disabled body indicative of endemic ableism/disableism. She views current definitions of able-bodied and ableism as overly simplified. We have to move away from the all or nothing binaries and out of long-established cultural comfort zones. Taussig explores the seeming naturalness of disability deprivation, exemplified by poverty and unemployment.

Taussig poignantly discusses assumptions of asexuality and intimacy, and the overarching cultural discomfort with disability and sexuality. She relates how the subject is dismissed and/or ignored while simultaneously caught up in ideas of bodily perfection, invisibility voyeurism, and freakery. She underscores the narrow configuration of the “acceptable” body and the copious amounts of physical and psychological energy required to make others feel comfortable with those who fall outside the “lines.” The author’s discussion of the medical and social models of disability illustrates the need for a serious philosophical shift in the understanding of disability beyond one-dimensional understandings of “weakness,” “defect,” “incapacity,” or “cure.” An interesting exploration of the impact of the systemic perception of disability demonstrates that the process is not straightforward.

What is meant by social citizenship is analyzed by way of perceived role expectation, position, utility, and lack of presence. The cultural narrative of disability is rarely developed by disabled people’s experience. Disability is often “understood” in terms of loss, functionality, worth, cost, and premium, particularly in the midst of a profit-driven medical system when decisions are made in all aspects of life. Benefits and supports that are often tied to income level dictate employment decisions or lack of them. Social marginality is maintained and reinforced.

Taussig presents an interesting discussion of the illusion of inclusion and the taken-for-granted aspects of the body, physicality, and disability accommodation beyond ramps and accessible toilets. There is a need to move beyond these simplistic understandings. Examining concepts of speed, space, and time provides the basis for a far more nuanced understanding of disability and society. Similarly, the author highlights the need for the “sisterhood of feminism” to truly engage with disability issues in a substantive manner. Furthermore, there is a detailed analysis of unexpected, uncontrolled encounters with strangers and their concepts of kindness toward disabled people, what it demonstrates and reflect.

The author advocates moving beyond a best-intentions and better-than-nothing approach to access and inclusion. Taussig provides a useful list of resources and individual contacts for further information and research. Sitting Pretty: The View from My Ordinary Resilient Disabled Body is a modern approach illustrating the impact of ableism in the daily lives of disabled people. This is a much-needed resource.

Citation: Nancy Hansen. Review of Taussig, Rebekah, Sitting Pretty: The View from My Ordinary Resilient Disabled Body. H-Disability, H-Net Reviews. February, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56114