Lynsey Cullen. Review of Åsa Jansson. From Melancholia to Depression: Disordered Mood in Nineteenth-Century Psychiatry.

Åsa Jansson. From Melancholia to Depression: Disordered Mood in Nineteenth-Century Psychiatry. Mental Health in Historical Perspective Series. Cham: Palgrave Macmillan, 2021. 249 pp. $59.99 (cloth), ISBN 978-3-030-54801-8.

Reviewed by Lynsey Cullen (Nottingham Trent 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=56170

Throughout the second half of the nineteenth century, melancholia was consistently one of the most common diagnoses in asylums across Britain (second only to mania). Much has been written on individual mental disorders and on the general history of psychiatry and asylum medicine, but how melancholia was defined and diagnosed has been neglected.

Åsa Jansson’s From Melancholia to Depression: Disordered Mood in Nineteenth-Century Psychiatry (part of the publisher’s Mental Health in Historical Perspective series) demonstrates how the idea of a “mood disorder” was created in the nineteenth century and how melancholia was reconceptualized as a disease to fit into this new diagnostic understanding. Jansson explains that melancholia was not a timeless illness finally discovered by nineteenth-century doctors but, instead, that the meaning of melancholia as a medical condition changed during this period, effectively making it a new disease. To explain this, Jansson focuses on the uptake of physiological language and concepts into psychological medicine and the institutionalization of medical statistics and standardization of record practices in asylums.

The introduction carefully presents a background to melancholia that clearly demonstrates the complexity of a condition that has never been easily defined as one “thing.” The early medieval definition was based around ancient humoral imbalances, which developed over the centuries to the “English malady” of the eighteenth century, thought to primarily affect the weak-nerved upper classes. But while the term “melancholia” has existed since ancient times, Jansson sets out to prove that the biomedical illness which the term came to infer in the nineteenth century was historically new.

Chapter 2, “The Scientific Foundation of Disordered Mood,” explains how the language and concepts of physiology were adopted by medico-psychology. Specifically, the chapter considers how the work of Thomas Laycock and W. B. Carpenter served as an initial framework for explaining disordered mood. Similarly, the next chapter, “The Classification of Melancholia in Mid-Nineteenth Century British Medicine,” traces the work of two influential physicians, J. C. Prichard and John Conolly, and their uptake of new “moral treatments” in treating the insane, rather than the older practice of restraint. “Melancholia and the New Biological Psychiatry” then draws on the influence of German psychiatry on British psychological medicine and traces the conceptual history of disordered mood through the latter half of the century, culminating in melancholia being considered a distinct psychiatric category with a neurobiological foundation. Chapter 5, “Statistics, Classification, and Standardisation of Melancholia,” departs from the history of medical men and turns instead to the creation of the Lunacy Commission and the subsequent administrative framework that sought to standardize diagnostic systems from the 1840s onward. The process of classification and diagnosis is then traced to the asylum ward in the final chapter, “Diagnosing Melancholia in the Victorian Asylum,” which uses casebooks from the Edinburgh Royal Asylum and others to examine how the diagnosis process was gradually merged down to an efficient system of key words and neat medical categories.

A thought-provoking read, the book draws on a range of sources, including medical and psychiatric textbooks, lunacy commission records, asylum records, and journal articles, to demonstrate how melancholia was made into a modern biomedical mood disorder. In particular, I found the careful and considered exploration of how asylum statistics shaped diagnostic categories and criteria to be both novel and engaging. The “creation” of melancholia, from what was clearly a complex condition made up of vast experiences, however defined, to a neatly categorized condition, forces the reader to consider the definitions and diagnosis of mental health in a broader sense. Jansson’s focus on this process, therefore, fills an important gap in the current literature.

More broadly, this book is based firmly on the premise that the idea of a mood disorder was not possible before the modern scientific model of emotion itself was created, which raises much deeper ontological questions about the timelessness of mental health disorders that have never been more relevant. I found myself initially skeptical of Jansson’s dismissal of broad histories of melancholia and mood disorders, based on this central premise that mood disorders could not have existed before mood was defined. But the author’s explanation of melancholia as a product of definition is a powerful one. It could still be argued that if some mood disorders are thought to have some biological roots, then they would have existed in some form before having been defined by nineteenth-century psychiatry. That said, without a consistent means of definition and relevant and substantial source material these conditions cannot be traced with any meaningful biological constancy. In this sense, Jansson’s work has only been made possible by the Victorian obsession with record keeping, classification, and definition, concepts that quite neatly sum up this book. Jansson’s work is, in essence, one of definition and language that has so far been lacking in the history of nineteenth-century psychiatry but that is essential to our understanding of how mental health was perceived and diagnosed. Overall, Jansson’s work provides a timely, fresh, and important contribution to the history of psychiatry and mental health more broadly.

Citation: Lynsey Cullen. Review of Jansson, Åsa, From Melancholia to Depression: Disordered Mood in Nineteenth-Century Psychiatry. H-Disability, H-Net Reviews. July, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56170 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Emmeline Burdett. Review of Millett-Gallant, Ann; Howie, Elizabeth, eds., Disability and art history.

Author: Ann Millett-Gallant, Elizabeth Howie, eds. Reviewer: Emmeline Burdett

Ann Millett-Gallant, Elizabeth Howie, eds. Disability and Art History. Interdisciplinary Disability Studies Series. New York: Routledge, 2017. Illustrations. 218 pp. $49.95 (paper), ISBN 978-0-8153-9213-2

Reviewed by Emmeline Burdett (University College London) 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=55226

In their introduction to this volume, the editors state that theirs is the first volume to combine interdisciplinary art history with disability studies scholarship. One might think that this distinction belongs to the late Tobin Siebers, but, as the editors point out, their approach is somewhat different. While Siebers focused particularly on modernism and found examples of a “disability aesthetic” across art and visual culture, the focus of this volume is in some respects more diffuse—ranging as it does from Mesoamerican sculpture, through the paintings of Otto Dix portraying injured veterans of the First World War, to photographers and disabled performance artists.

Chapter 1 is Millett-Gallant’s “Artists and Muses: ‘Peter’s World’ and Other Photographs by Susan Harbage Page.” It focuses on the photographs that Harbage Page has taken of her disabled nephew, Peter, beginning when he was five years old. Collectively, these photographs are titled Peter’s World, and they give a fairly comprehensive portrait of Peter’s childhood, adolescence, and young adulthood. As Peter has grown older, he has become more involved in the process, and Harbage Page says that “currently the images are more collaborative” (p. 12). Millett-Gallant argues that the photographs are intimate and that, in contrast to many photographs of disabled subjects, they clearly show Peter as an individual. In a way, however, this is done by showing Peter alone, even in the midst of family occasions, such as Christmas. In addition, his relationships (such as with his girlfriend) are alluded to but not shown. The photographs in Peter’s World can also be contrasted with, for example, Diane Arbus’s Untitled series of photographs of institutionalized people, produced in the early 1970s. While they are “slice of life” photographs, Peter’s World suggests narrative. In addition, while Peter is an active participant in his aunt’s photos, there is a question mark over whether or not Arbus’s subjects all knew that they would be a public spectacle.

Another criticism of Arbus is that her photography “enfreaks” her subjects by photographing them in ways that accentuate their differences. Millett-Gallant argues that this is, in some ways, reminiscent of nineteenth-century photographs portraying people with developmental impairments as members of some primitive tribe. She gives the examples of exhibits at freak shows being dressed in animal skins and of John Langdon-Down’s 1887 study of the exhibition, begun in 1849, of microcephalic children of unknown origin, who were referred to as “Lost Aztec Children.” It is, however, unclear (at least to me) whether Millett-Gallant means this as a general criticism of Arbus or whether it is supposed to refer in particular to her photographs of institution inmates celebrating Halloween. What is clear, however, is that Arbus was not attempting any kind of social revolution as she referred to her subjects as “retarded people, idiots, imbeciles and morons”—in sharp contrast to Peter’s World, which clearly shows his individualized preferences for certain activities (p. 21). Harbage Page also makes an appearance in the chapter, through her 2000 self-portrait A Question of Beauty, which shows her after she had one breast removed due to breast cancer. Through the photograph, she seeks to address questions that, although they relate to issues of beauty, womanhood, and femininity, are in some ways similar to those raised by Peter’s World: for example, after Harbage Page lost her hair due to chemotherapy, she was mistaken for a man. Similarly, her photographs of Peter individualize him and help to dispel misconceptions about people with learning difficulties. In addition, the photo shoots only take place if Peter is in the mood for them, meaning that, unlike with Arbus’s subjects, there is no real question of him being an unwilling participant.

Chapter 2 also considers questions of exploitation in relation to Jake and Dinos Chapman’s 1995 work Ubermensch and German artist and director Christoph Schliegensief’s 2002 TV series and film Freakstars 3000. The chapter opens with two quotations: one from the Guardian newspaper’s review of Ubermensch and the other from a member of an online community called xpbulletin.de who wrote of Freakstars 3000 that the participants were being exploited because they “obviously couldn’t assess the situation” and were “being exposed in front of the whole ‘nation’” (p. 29). The chapter’s author, Nina Heindl of Ruhr University, Bochum, and the University of Cologne, argues that, while the two works in question expose their (nondisabled) creators’ preconceived ideas about disability, they also provide a space for reflecting on stereotypes about disability and deviations from the norm. I must admit that I felt that one of these stereotypes could be discerned in the quote about Freakstars 3000—how did the person know that the participants “obviously couldn’t assess the situation”? Was he (or she) merely trying to make himself (or herself) look virtuous and insightful by assuming that the participants were extremely vulnerable and ripe for exploitation? Or were the participants actually being exploited?

The Chapmans’ sculpture Ubermensch depicts the late physicist Stephen Hawking in his wheelchair, at the top of a steep cliff and seemingly in danger of falling right down to the ground again. While one critic, Jonathan Jones, was horrified by the sculpture and interpreted it as mocking Hawking by suggesting that his physical problems were insurmountable, another, Robbert Roos, praised the work and suggested that, by showing Hawking at the top of a slope, it acknowledged that his brilliant mind had enabled him to make such an important contribution to science, despite his physical limitations. Heindl notes that the existence and validity of two such differing interpretations of the same work enables discussion, and she duly discusses it. She writes that Marc Quinn’s sculpture Alison Lapper Pregnant also depicts a disabled subject, but that, in contrast to the Chapman brothers’ Hawking, Lapper is in a relaxed and natural pose. She points out that Hawking looked naturally tense anyway, as a result of not being able to use a large number of the muscles in his face. She also addresses the question of Hawking’s precarious pose (one of the front wheels of his wheelchair is teetering dangerously on the cliff edge) and discusses it in relation to Jacques-Louis David’s famous 1801 painting Bonaparte franchissant le Grand Saint Bernard, in which a heroic-looking Napoleon is shown astride a bucking war horse, pointing up a mountain. Like Hawking, Napoleon is portrayed in a precarious position; not only does the horse have just its back legs on the ground, but these are also perilously close to a sloping rock, indicating that, as the position of Hawking’s front wheel means that he is in danger of falling forward, so Napoleon is in danger of being propelled backward. The difference, says Heindl, is that while Napoleon is physically powerful and able to control both his horse and his armies, there is not much that Hawking can do if his wheelchair starts falling forward. The correlation of superior body with superior intellect clearly does not work in the case of Hawking, and this leads to differing interpretations and the possibility that these betray spectators’ own biases.

Freakstars 3000 focuses on some residents of the Tieler-Winckler house for people with learning difficulties in Berlin-Lichtenrade. The participants take part in a number of well-known TV formats, including a singing competition, a home-shopping series, a weather program, and a report from a hostage situation. The show has an accompanying website on which a lot of information can be found about the participants, but nothing at all is said about their impairments, and this seems designed to indicate that the impairments are irrelevant. This stance seems commensurate with Schlingensief’s other projects, most notably, Bitte liebt Österreich (Please love Austria), in which the public could vote on the fates of a group of people introduced by Schlingensief as “asylum seekers” (p. 45). If voted out by the public, these people would have to leave both the accommodation in which Schlingensief had installed them and, in fact, the country. Bitte liebt Österreich was intended to make a point about society’s responsibility toward asylum seekers. Heindl writes that the Germanist Nina Ort is of the view that the online comments about Freakstars 3000, while intended to be supportive of the disabled contestants, contribute to their exclusion by, among other things, leaping to the conclusion that they are victims of exploitation. But were they being exploited? Did Schlingensief undo any good work by calling the group Freakstars, with its obvious connection to nineteenth- and early twentieth-century freak shows? Or was this, too, something that Schlingensief was doing to provoke his audience? Schlingensief’s introduction to the film is reminiscent of the descriptions used by owners of freak shows to encourage the public to come and see their “exhibits,” but it is also ironic, suggesting that it is the viewers, rather than the viewed, who have the problem.

I really appreciate the discursive nature of this chapter, although it is a pity that the author uses the phrase “so-called norm” (p. 30). This is an increasingly common phenomenon—not just in disability studies but also in areas like black studies, where, as a substitute for addressing genuine injustices, scholars and activists take offense at the suggestion that their group constitutes a minority, even when this is obviously the case. Although this may be intended to challenge established ways of thinking, or to preempt questions about the group’s significance, and, therefore, right to have measures taken in its favor, it is counterproductive as it fails to reflect reality. Groups deserve to be included because they are there; they do not have to represent everyone.

Chapter 3 surprised me with its opening sentence in which its author, Rebecca R. Stone, claims that Native American and First Nations people seem to have an unusually high regard for physical difference. This was certainly not the impression I gained from the overview given in Hugh Gregory Gallagher’s By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich, although that book was published in 1990 and could not be described as being an exhaustive inquiry into the subject. Stone’s chapter focuses on the idea described in her opening sentence and seeks to substantiate it by discussing various works of Amerindian art that, allegedly, depict impaired individuals. She also uses the word “dis’abled” to reflect the different way she says that these societies view disability (p. 47). Her chapter begins with a discussion of a Moche figure from northern Peru (circa AD 300), whose completely white eyes, Stone argues, probably denote advanced cataracts. The man depicted was a high-status spiritual figure (that is, a shaman), and Stone explains that a shaman’s roles involved knowledge of areas that would, in Western society, encompass fields as diverse as psychology and medicine; in addition, they acted as mediums and interpreters of dreams. Being a shaman of necessity required anomalousness and living outside of societal norms. This does rather raise the question of whether being regarded as “differently different” constitutes acceptance.

Stone argues that Moche figurines have an unusual degree of realism and that this extends to their depiction of disability; Moche figures are depicted with such things as missing limbs, clefts, achondroplasia, scarring, and evidence of leishmaniasis (a disease in which parts of the face are eaten away by a parasite borne by sandflies). Stone argues that the majority of these figures depict shamans, while others appear to show spiritual intermediaries in trance states. Identifying which conditions are depicted, and therefore interpreting which ones may have been considered to be most conducive to making a good shaman, can be informative. To this end, the number of depictions of visual impairment is striking, making it possible for one to surmise that lack of sight in everyday life was regarded as a particularly important quality for shamanic activities, such as trances. This interesting and thought-provoking chapter opens up new lines of investigation, and the straightforward way the Moche depicts impairments puts me in mind of the English king Henry V (1386-1422). At the age of sixteen, while still heir to the throne, Henry was almost killed when he was struck in the face by an arrow at the Battle of Shrewsbury in 1403. Although he survived, his face was permanently scarred. I mention this because a famous posthumous portrait of the king depicts him in profile, while most English monarchs are depicted facing the artist (actually, a short and totally unscientific look at Henry’s portraiture suggests that he was most often depicted in profile). I assume that Henry V was depicted this way to hide the scarring, and it is interesting to ponder that the Moche probably would not have done this. The chapter also makes me think of Blind Harry (circa 1449-92), a medieval Scottish chronicler about whom I would be interested to know more.

Chapter 4 continues the theme of disability in Amerindian art, and in it William T. Gassoway argues that the contemporary focus on dwarfism in ancient art reveals more about scholars’ preoccupations than about those of the societies in which the artwork was created. Gassoway expresses the hope that his chapter will help with this problem by encouraging scholars to approach disability in a similar way to how they approach categories like gender, race, and sexuality. Gassoway argues that people recognizable as “dwarfs” have been extensively depicted in Mesoamerican art for the last three thousand years and that people of restricted growth held high status at the court of the Aztec king Moctezuma, who apparently valued their “wisdom and exceptional self-assurance” (p. 62). In fact, colonial chronicles relate that when Moctezuma became tired of his other advisers, the palace dwarf was asked to stay behind to advise the king on matters of state and religion. This kind of privileged access to rulers is reminiscent of “fools” at English courts—certainly in terms of how they were permitted to speak to the monarch in ways that no one else could. There is also a traditional realization that the “fool” is actually wise and gives good advice. I do feel that this link is worth exploring. Gassoway writes that a lot of the people of restricted growth depicted in the artworks he is discussing were finely dressed, and he asks whether the works depict actual people and whether their purpose is honorific or satirical? He quotes an account by Hernán Cortés of seeing people with various impairments who were segregated but “with people to look after them,” which does raise the question of whether it was possible to be very high status or very low status but difficult to just “be” (p. 67).

It is difficult to say whether these beliefs have filtered down to modern inhabitants of the Americas, and Gassoway criticizes the common anthropological tendency to assume a great deal of continuity between ancient and contemporary beliefs. In addition, the anthropologist Carson Murdy has developed various theories that, if true, suggest either that the Olmec people of present-day Mexico had an extraordinarily high incidence of impairment or that Olmec artists were fixated on a few individuals. A very high incidence of impairment would surely be evident from Olmec skeletons, but Murdy does not examine any. Those who actually have made such examinations have found that sculptures of fetuses often depict the conditions that they died of. This gives rise to Gassoway’s final question: What was the purpose of ancient people’s depiction of certain bodies? Was it the only proper way of depicting sun, rain, etc.? Such an interpretation would go far beyond the “medical model,” while at the same time not being anachronistic.

Chapter 5 is Keri Watson’s “Difference and Disability in the Photography of Margaret Bourke-White.” Bourke-White was a US photographer who was active throughout the first half of the twentieth century and who was committed to social justice. Watson’s chapter focuses on Bourke-White’s 1937 bestselling You Have Seen Their Faces and her 1934 photographs of the residence of Letchworth Village, an institution in New York that opened in 1911. In 1932, Bourke-White was commissioned by Mary Averell Harriman, one of Letchworth Village’s trustees, to photograph the inmates and document the success of Letchworth’s programs. The institution was proud of its progressive ethos, and the chapter quotes the sociologist and disability studies scholar Robert Bogdan as saying that the photographs “promoted the message that if institutionalized, possibly dangerous and certainly incapable people with disabilities could be tamed, even trained” (pp. 83-84). Watson contends that the photographs are actually quietly subversive, providing both a critique and a criticism of Letchworth but also of institutionalization more generally. She also argues that the photographs provide evidence of Bourke-White’s commitment to social justice.

The evidence for this is visible from a number of photographs taken by Bourke-White at Letchworth Village. Girls Lined Up without Shoes shows that, although the girls are smiling, they are wearing dresses that appear dated and ill-fitting, as well as being not very clean. Their stockings have holes in them, and all the girls have the same pageboy haircut. Watson argues that the way the girls are spilling out of the frame of the photograph hints that Letchworth was poorly planned and overcrowded. Similarly, Men with Hoes, Letchworth Village, 1933 and Boys Digging a Trench, Letchworth Village, 1933 illustrate young boys carrying out manual labor with tools that are too big for them.

Watson shows how these photographs, which offer sympathetic portrayals of people in circumstances that were far from ideal, differed dramatically from other portrayals of disabled people from the US during the same period. Official photographs of agricultural workers seem to have avoided photographing obviously disabled people—although there are exceptions to this—and, of the photographs that Bourke-White took at Letchworth Village, none discussed in the chapter portray people who are visibly disabled. Stereotypes abounded, though, in fiction; Watson mentions Lon Chaney’s penchant for portraying characters “whose bodily difference signified internal derangement,” as well as various characters from the novels of John Steinbeck (p. 67). It is, however, not clear whether these examples are actually stereotypes or whether Steinbeck stands accused of merely portraying characters in a way that acknowledged that they did things in a certain way or would have faced certain constraints due to the society in which they lived. For example, Steinbeck described how Lennie, a mentally disabled character in his 1937 novel Of Mice and Men, walked “dragging his feet a little, the way a bear drags its paws,” and drank “with long gulps, snorting into the water like a horse” (pp. 87-88). Watson’s implication is that Steinbeck’s zoomorphism is insulting and intended to demean Lennie as a character, and, while it may indeed have been intended to “other” him, this is not the only possible interpretation. The same thing can be said of Steinbeck’s characters Crooks, who would at the time have found that both his stooped back and his race (he was black) made him less valuable to others, and Candy, who might have been ostracized by other workers because he only had one hand. It is just not clear whether Steinbeck is being accused of portraying these things at all or of portraying them in a discriminatory way. This is important, as in 2020, Harper Lee’s 1960 novel To Kill a Mockingbird was banned in California for its use of racist language, even though it is an anti-racist novel and as such obviously portrayed racism, while certainly not endorsing it. This kind of thing makes those involved in social justice movements look ridiculous: as though they have no genuine reasons for wanting to improve society and are loudly offended by things simply because they have not bothered to investigate them properly. Steinbeck’s portrayal of disabled characters is certainly a question within disability studies, and for this reason I would suggest that, instead of using a quotation that could be (or be seen as) completely innocuous, Watson might have pointed out that Lennie is killed by George, then discussed the question of whether or not the reader is invited to sympathize with George rather than with his victim, and approached the question of Lennie’s potential “othering” by working backward. Similarly, Lennie was congenitally disabled, making him much more likely to fall victim to eugenics laws, while Crooks and Candy had simply experienced accidents. The way Watson lumps the three together as examples of Steinbeck’s allegedly prejudicial attitude to disability does not help to center the novel in the time period in which it was written.

You Have Seen Their Faces was Bourke-White’s title for her hard-hitting series of photographs of those suffering severe economic hardship during the Great Depression. Some of the subjects of the photographs were disabled, which suggests that the title tackled not only the temptation to ignore the suffering of the economically disadvantaged but also the systematic exclusion of disabled people from relief programs, like President Franklin D. Roosevelt’s New Deal. The implication was that, while Roosevelt had risen to become president, he did not think that other disabled people would ever be anything other than objects of charity. This seems to reference Roosevelt’s complicated attitude to his own disability, and therefore I found it odd that Watson made no mention of Gallagher’s 1985 book, FDR’s Splendid Deception: The Moving Story of Roosevelt’s Massive Disability and the Intense Efforts to Conceal It from the Public.

Staying on the subject of photography, chapter 6 is Timothy W. Hiles’s “Representing Disability in Post-World War II Photography.” In this chapter, Hiles argues that postwar photographs of disabled people fall into three groups: the first enshrines separation and segregation; the second is more egalitarian but does not eschew this hierarchy; and the third is more inclusive, showing disabled people as just part of society. Hiles argues that, in 1977, the disability scholars Robert Bogdan and Douglas Biklen identified that disability as a concept was a social construct rather than just an objective description of impairment. Photographic representations of disabled individuals dating from the decades immediately following World War II support this assertion. For example, a 1951 Time magazine article focusing on P.S. 135, a school in Manhattan, the purpose of which was to integrate children with cerebral palsy, was accompanied by a photograph of Neil Koenig, aged nine, one of the children at P.S. 135, and, as Hiles explains, the photograph was taken in such a way as to emphasize Koenig’s cerebral palsy (his arched back and unusual gait, for example), while making no effort to show him as a human being. The effect this achieves is reminiscent of horror film “monsters” of the 1930s and 1940s. What is completely absent from the photograph is any acknowledgment that Koenig is a little boy. This is the problem with the photograph, but Hiles writes that the problem is that the article’s emphasis is on “adjusting to normal life” (p. 102). This takes us back to Heindl’s unfortunate use of the term “so-called norm.” There is a fine line between insisting that someone is “the norm” when they clearly are not and then energetically combating this completely imaginary injustice, and, more realistically, acknowledging that the problem is how different groups of people are integrated together. As the chapter correctly observes, portraying a small boy as a threatening bogeyman devoid of individuality is unlikely to assist any kind of integration. The same criticism can be leveled at Normal Pupils Watching Their Handicapped Classmates through a One-Way Window (1950), another photograph published in Time magazine in 1951. Hiles writes that, though integration is more benign and progressive than segregation, it also has problems, and the way it was done during this period reinforced hierarchical structures. The photograph named above is certainly odd, and, though Hiles likens the “normal” children to cinemagoers watching a film, the one-way window makes them seem more like spectators observing non-human animals in a zoo. As Hiles points out, the kind of “integration” likely to result from such encounters would be likely to be condescending at best and not something that would result in genuine equality. By contrast, Cornell Capa’s photographs of people with learning difficulties (published in Life magazine in 1954 to accompany an article on “retarded children”) are very naturalistic but sadly let down by their captions, which draw unnecessary attention to the children’s differences to the point of speculating that one little girl, Eileen, was “staring emptily out into space, lost in her own infantile world” (pp. 108-9). Eileen looks more as though she is speaking or listening to someone.

Having said that, it is rather hard to say what Hiles thinks that integration should be or do. A photograph from 1949, showing the black American baseball player Jackie Robinson signing autographs for a group of white children, would seem to be an ideal example of a photograph showing that prejudice is pointless but apparently not; “the visual code continues to be troublesome because it attempts to absorb difference into the fold of the ‘normal’” (p. 110). Earlier in the chapter, Hiles suggests that such absorption was a good thing, but he has apparently changed his mind.

Another problem with this chapter is that its focus is entirely on nondisabled photographers. A lot of the points made by Hiles could have been made more effectively by using work from disabled photographers, particularly when juxtaposed with the photographs already used in the chapter. The chapter does make a small effort to remedy this, by quoting the writer Raymond Goldman on the psychosocial effects of childhood polio, but it is far from enough. This is similar to a problem we encounter later, in relation to Elizabeth Howie’s discussion of Yinka Shonibare’s A Day in the Life of a Victorian Dandy (1998), a work that is not about disability.

Chapter 7 is Anne Marno’s “The Reception of Otto Dix’s Painting The Cripples (1920) in Yael Bartana’s Film Degenerate Art Lives (2010).” Although the two works are in different mediums and are separated by almost a century, they are strongly connected. Marno writes that Yael Bartana’s film “mobilizes the disabled veterans from Dix’s painting to become a collective force; the film thus strongly asserts the power of modern art against the Nazis’ defamation” (p. 119). Otto Dix was a veteran of the First World War, and his painting The Cripples depicts injured war veterans on a street. It is a criticism of the glorification of war. The painting was regarded by the Nazis as an example of a malignant artist, hostile toward the people, who is mocking heroic life. It was exhibited in 1933 as an example of “degenerate art” but is now presumed lost (p. 122).

Bartana’s Degenerate Art Lives is a contemporary reinterpretation of The Cripples. Modern technology allows her to animate and multiply the veterans in Dix’s painting, and the meaning of what she has done has been much debated. Some people have argued that her work seeks to raise awareness of either disabled war veterans or of disabled people in general. Its grey background makes no reference to a specific time or place—either Israel or World War I—and this gives it a universality that enables it to be seen as a critique of war in general. The reason why Bartana chose this work in particular (as opposed to another, still-extant Dix painting like The Skat Players [1920]) is precisely that it has been lost; by taking the details from a preserved photograph of the painting, she makes the viewer aware of this. This becomes even more powerful when considered in conjunction with the Nazis’ view that Dix’s painting was an example of “degenerate art” and with the Nazi “euthanasia” program. By giving her own reinterpretation of the work the title Degenerate Art Lives, Bartana not only expresses solidarity with Dix but also expresses her own opposition to every form of discrimination practiced by the Nazis. The Cripples lives not only because of Dix’s original intentions but also because of the painting’s own history.

Chapter 8 is Amanda Cachia’s “Disabling Surrealism: Reconstituting Surrealist Tropes in Contemporary Art.” In it, she argues that surrealism takes on new meanings when juxtaposed with the work of the contemporary disabled artists Lisa Bufano and Chun-Shan (Sandie) Yi and Artur Żmijewski who does not to identify as disabled. Cachia argues that they demonstrate how surrealism can be simultaneously enhanced and destabilized. Cachia writes that psychoanalysis has also had a long-standing historical and medical interest in the uncanny and that this has often involved disabled bodies. This is quite a problematic statement as such involvement has often been exploitative.

Cachia notes the surrealists’ interest in the form of the praying mantis and quotes the historian William L. Pressly’s claim that “the Surrealists found this cannibalistic nuptial a compelling image of the potential for erotic violence” (p. 134). An example of this is André Masson’s 1939 drawing La génie de l’espèce III, which depicts a mantis and which bears a startling resemblance to the appearance of the disabled performance artist Bufano in her 2011 show Home Is Not Home. The similarity was particularly striking because Bufano, who was a multiple amputee following a bacterial infection at the age of twenty-one, had strapped Queen Anne table legs to her legs and arms. The point of this was to explore various ideas including alternative locomotion, her own sexuality, and corporeal difference. As well as resembling the surrealist praying mantis, Bufano’s performance character resembles The Exquisite Corpse, a surrealist game in which participants drew part of a drawing on a sheet of paper and then folded it over and passed it to the next person. Cachia suggests that the points where Bufano’s limbs meet the table legs are suggestive of the folded-over paper from The Exquisite Corpse. Bufano’s writings explain her connection with the audience, while Cachia argues that this combination of attraction and repulsion echoes the forms fetishized by the surrealists. The difference is that Bufano was in charge (she took her own life in 2013) and that she found the experience liberating.

Yi is a performance artist who was born with two fingers on each hand and two toes on each foot (something that has been happening in her family for generations). For her 2005 work, Can I Be Sexy for Once?, she made a kind of stone-like object for each foot to go in the space between her two toes. The “stones” were attached to strings going up each of Yi’s legs, and this puts Cachia in mind of Hans Bellmer’s 1950s photographs of his collaborator, Unica Zürn, with string bound around her torso. Bellmer’s photographs never show Zürn’s face, and the string looks uncomfortable. By contrast, writes Cachia, Yi looks adorned and is empowered, having taken control of her body. Cachia also contrasts the surrealists’ penchant for photographing fingers and toes in such a way as to make them seem uncanny, with the fact that Yi is already uncanny. Furthermore, the surrealists do not seem to have sought out any actual disabled people, preferring to photograph nondisabled people made to look uncanny. Consequently, both Bufano and Yi are expressing power and agency by taking surrealist tropes and using them to objectify their own bodies. In this, they are, writes Cachia, doing something that the surrealists could never quite achieve. Why the surrealists chose not to try to achieve this is another question.

The Polish artist Żmijewski does not identify as disabled but has made a series of photographs titled Oko za oko (An Eye for an Eye) in which nondisabled men “lend” their limbs to amputees, and the pairs are then photographed strolling, climbing stairs, or bathing (p. 152). That Żmijewski does not identify as disabled is potentially problematic for Cachia. Although he seems genuinely interested, Cachia writes that he can only interpret experiences at one remove, as opposed to Yi and Bufano whose performances are directly based on their own personal experiences—but that this may be part of the point. My colleague, the Flemish historian Pieter Verstraete, addressed the question of the contribution that could be made to disability studies by nondisabled scholars in his 2012 book, In the Shadow of Disability, and I would argue that, apart from anything else, demanding that no one could say anything about a topic on which he or she had no personal experience is likely to result in society becoming increasingly balkanized, and the probable lack of dialogue that would result from this is certainly not something that would be at all likely to change society for the better. As Żmijewski “seems genuinely interested,” this is a good starting point—not a reason to reject his involvement.

Chapter 9 is “The Victorian Dandy: Yinka Shonibare’s Allegory of Disability and Passing.” In this chapter, Howie makes a feeble attempt to sustain the idea that Shonibare’s 1998 work A Day in the Life of a Victorian Dandy—a series of staged photographs showing the daily life of Shonibare’s eponymous “dandy”—is about disability, an idea specifically rejected by the artist himself.[2] Howie states that, although Shonibare’s dandy is not visibly disabled (she points out that he has a cane but so did the famous real-life dandy Beau Brummell, as his statue in Jermyn Street, London, and many other pictorial representations, will testify), various points can be made about the way one looks at people who are different. Similarly, Howie points to a mid-nineteenth-century trope of having a masculine hero accompanied by a disabled friend, who would compensate for him being the strong, silent type. The problem with this is that while Shonibare’s dandy is seemingly adored by all and sundry, he is not accompanied by a friend, disabled or otherwise. The “adoration” of Shonibare’s dandy does raise an interesting point to do with class rather than race. Classic British literature is full of grasping characters dancing attendance on rich relations or employers with the sole aim of being rewarded in their will; Charles Dickens’s novel Martin Chuzzlewit (1842-44) is a case in point, as is George Eliot’s Middlemarch (1871-72). In addition, Jane Austen’s unfinished novel Sanditon (1817) features Miss Lambe, a West Indian heiress who, prior to her arrival, is seen as noteworthy for her financial situation rather than for her race. This does not mean that there is nothing to say about race but merely that other things are worthy of mention too.

Although the chapter makes interesting points, none of them are about disability, and I would estimate that around 90-95 percent of the chapter is about race. For this reason, I am extremely annoyed that it was considered worthy of inclusion in a book on disability and art history. Howie mentions in passing Shonibare’s work Age of Enlightenment (2008), in which various Enlightenment figures are depicted with visible impairments (for example, Adam Smith is depicted with a hunched back). A discussion of this work would certainly have been more fruitful than concentrating on A Day in the Life of a Victorian Dandy, which merely served to give the impression that Howie was only interested in race or that she was somehow unable to imagine that there could really be anything to say about disability.

The final chapter is “Crafting Disabled Sexuality: The Visual Language of Nomy Lamm’s ‘Wall of Fire.’” In this chapter, Shayda Kafai discusses the performance artist Nomy Lamm’s 2008 show Wall of Fire, which is a reclamation of the sexuality of a “bad ass, fat ass, Jew dyke amputee,” as Lamm describes herself (p. 178). Although the inclusion of this quote indicates that the fact that Lamm ticks lots of boxes seems to be depressingly more important than whether or not she says anything particularly profound about the human condition, her identity is significant from the point of view of the message of her performance art. In essence, disability performance art fulfills a similar function to things like disability pride; it encourages self-acceptance among discredited groups and tells them that they are desirable. In Wall of Fire, Lamm achieves this by, for example, wearing an eye-catching red sundress when a lot of clothes for larger-sized people are dull-colored, suggesting that their function is to help overweight people fade into the background (and that this is by definition what they should want) and making clear that her prosthetic leg can be sexual and is used by her as a sexual object. The title Wall of Fire was chosen because, as she said to the chapter’s author, “For me claiming my sexuality has meant walking into the fire in a way” p. 184).

I found this chapter slightly troubling as I felt that both Lamm and Kafai were conflating things that were not necessarily the same. Part of this has to do with Lamm’s “fat liberation” politics, because, though some of the points made are valid (such as the rejection of dull-colored clothes for overweight people), one major difference is that in the United States, there is greater acceptance of the idea that severe obesity is a disability. Seen from a political standpoint such as Lamm’s, this entails such things as protecting one’s fatness and portraying it as an asset, as Lamm does. It seems to me that this is a more extreme position than, say, drawing justifiable attention to societal pressure (particularly on women) to be slim and conventionally sexually desirable (as well as to the tendency to judge people who are not slim instead of bothering to find out anything about them). It also raises the question of whether obesity is a transient condition—for example, breaking one’s leg does not make one physically disabled. (While one may experience some of the problems and attitudinal barriers that confront physically disabled people, a broken leg usually heals within a relatively short time.) Similarly, it is questionable whether Lamm’s obesity is either natural or permanent, and acknowledging this is not the same as ignoring or endorsing societal pressure for women to be slim.

This chapter also discusses Lamm’s prosthetic leg, and, while it makes many valid points, such as Lamm’s challenging of the traditional idea that disabled people are asexual, it can also be accused of ignoring reality in the same way as some of the earlier chapters. For example, Kafai writes of how soldiers in the American Civil War lost limbs and conflates this obvious actual damage with Oliver Wendell Holmes’s view that the disabled body was not an effective reflection of the ideal citizen of a post-Civil War America. This is reminiscent of the disquiet expressed by disability studies scholars when they found out that the disabled English member of Parliament William Hay (1695-1755) had not regarded his bladder stones as part of his identity but instead had been keen to be rid of them.

This is a thought-provoking and informative work, but it does suffer from many of the pitfalls that seem to be becoming increasingly common in identity politics. For example, various of the chapters deny reality, instead using phrases like “the so-called norm” when there is nothing “so-called” about the fact that one group is more numerous than another, they conflate things that are only superficially alike, they question whether nondisabled people should be allowed to say anything about disability, and so on.

Note

[1]. I discussed this with the disabled artists Tony Heaton and Colin Hambrook, and it transpired that Shonibare was adamant that this work was about race but not disability. He was extremely frustrated that people kept trying to interpret it as being about disability.

Citation: Emmeline Burdett. Review of Millett-Gallant, Ann; Howie, Elizabeth, eds., Disability and Art History. H-Disability, H-Net Reviews. August, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=55226 This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Martin Atherton. Review of Edwards, R. A. R., Deaf Players in Major League Baseball.

R. A. R. Edwards. Deaf Players in Major League Baseball. Jefferson: McFarland & Company, Incorporated Publishers, 2020. 215 pp. $39.95 (paper), ISBN 978-1-4766-7017-1.

Reviewed by Martin Atherton (Independent scholar) 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=56112

This book gives profiles of the lives and careers of several deaf baseball players in America from the late nineteenth and early twentieth centuries, together with one example each from the 1940s and 1990s. The author seeks to place each individual in the wider contexts of baseball’s place in American society and how each instance reflected contemporary attitudes toward deafness and deaf people without speech. Not all the arguments put forward are fully convincing, as evidence of how these deaf individuals were supposedly challenging stereotypical attitudes and responses is not as strong or as extensive as the author suggests.

Having deaf and hearing players on the same team might be considered integration on a physical level, but this does not necessarily mean acceptance. William “Dummy” Hoy insisting that his teammates use sign language seems to have been successful, but there is no consideration of how his colleagues’ attitudes might have been influenced by his value to the team. Similarly, claims that there were close similarities with the situation faced by Black players are valid, but the level of discussion and analysis of these is not followed through to any great extent. Comparisons between Hoy’s situation and that of Jackie Robinson (the first Black player in Major League Baseball) founder to some extent due to a lack of information about Robinson or any analysis of their respective experiences.

There are two main drawbacks in this book that contribute to its weaknesses on an academic level. First, for those without an intimate knowledge of baseball’s rules, tactics, and statistics (such as myself), much of the information about each player’s achievements in the sport means little. Terms such as balls and strikes are familiar, if their determination is not, but the various percentages given and technical terms used do nothing to draw in the casual reader. The second weakness is the structure of the book, which seems to be based around a collection of individual essays. This itself is not problematic, but more assiduous editing of the material was required. There is constant repetition of detail, incidents, and claims throughout the book and even within chapters that makes the text tedious to read at times. It is not necessary to constantly remind even complete newcomers to baseball how the signaling system for balls and strikes works. The same is true of the claim that this system originated with Hoy, which appears several times in the book, giving the impression that if this argument is repeated enough times, the reader will become convinced. Devoting a whole chapter of twenty-three pages to someone who only had a very brief career in baseball seems to be justified on the grounds that he was a class warrior for all deaf people. This is framed within the context of Dick Sipek’s use of sign language and this particular argument has the benefit of drawing on quotes from Sipek himself, although there is little further evidence to support the debate.

The author clearly has a passion for this subject, but it appears that passion has overtaken any detached analysis and discussion of the subject or the individuals. After reading this book, there is very little that sticks in the mind. “Dummy” Hoy is well known and some readers may find out a little more about his career and life from this book, but the regular claims of his iconic status within the deaf community are accepted rather than challenged or assessed. The others mentioned in the book have much lower profiles so it would have been interesting to see some discussion of why this should be so, given their supposedly pioneering work in challenging misconceptions and acting as role models for other deaf people. This book may be of some interest to those interested in baseball and the role of deaf people in mainstream sport, but there is more missing from this collection than is offered.

Citation: Martin Atherton. Review of Edwards, R. A. R., Deaf Players in Major League Baseball. H-Disability, H-Net Reviews. February, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56112

Marion Schmidt. Review of Hedberg, Ulf; Lane, Harlan, Elements of French Deaf Heritage. H-Disability

Ulf Hedberg, Harlan Lane. Elements of French Deaf Heritage. Washington, DC: Gallaudet University Press, 2019. Illustrations, tables. 222 pp. $55.00 (paper), ISBN 978-1-944838-56-0

Reviewed by Marion Schmidt (Georg August Universität, Göttingen) Published on H-Disability (January, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=55352The signs for HEAR and HEARING, ethnologist Yves Delaporte states in the foreword of Ulf Hedberg’s and Harlan Lane’s Elements of French Deaf Heritage, are different both in French and in American Sign language. The first denotes the audiological ability to hear, the other belongs to the world of those who function in the hearing world, as opposed to those who are deaf. The “signs HEARING and DEAF,” he writes, thus “function as two ethnonyms” that “split the world in two anthropological categories, ‘us’ and ‘them,’ as all ethnic groups do” (p. 9). In recent years, the claim that American deaf people form an ethnic group has aimed to place them alongside the older categorization of a sociolinguistic or cultural minority, or to replace that categorization altogether. It had first been explicitly made for American deaf people by Harlan Lane—a hearing psychologist long involved in deaf studies—and archivist Hedberg in the early 2000s.[1] This has mostly been a US framework, while deaf people and organizations in other parts of the world have not necessarily chosen this framework. While the exact reasons for these different frameworks remain to be explored, it certainly has something to do with the fluid and internationally divergent definitions of ethnic groups, and the different rights, status, and political resources (or lack of) available to ethnic minorities in various countries.

Without engaging with these debates, Elements of French Deaf Heritage classifies French deaf people as an ethnic group by identifying ethnic markers, such as group identity, shared history, and myths. Hedberg and Lane undertook the tremendous task of combing through around twenty thousand pages of primary sources—school chronicles, the deaf press, memoirs, etc.—to identify French deaf schools and leaders, organizations and events, and French deaf artists active in the nineteenth century. They organize this content in four chapters, each with a short foreword on characteristics of ethnic affiliation. In its organization, the book is a chronicle or short encyclopedia, although one that would have profited from more thorough editing. While the entries seem to have been written to be read in isolation (some passages are repeated verbatim), they often refer to earlier entries. The reader may, therefore, sometimes become frustrated and confused by the piecemeal information on various people, institutions, or events. When read separately, the cross-references often remain unclear and are hard to follow. Perhaps the sometimes seemimgly unfinished nature of the book is due to the fact that Lane passed away in 2019 before seeing the project through to completion.

The first chapter focuses on schools as crucial locations of “ethnic acculturation.” A short introduction explains how schools often served (and still serve) as the first location where deaf children meet other deaf people, learn sign language, experience cultural and community norms, form lifelong friendships, and find, in deaf teachers, important role models. This introduction is followed by a chronological list of the 106 deaf schools founded in France since the eighteenth century. They cover the schools’ histories from their foundations to the present or until their closure. Listed are founding figures, notable alumni, and ties with important events or organizations. Not least, they chronicle in detail the debate over the use of sign or spoken language as the preferred or exclusive method of education. Here the authors state that education in French Sign Language was the norm during the nineteenth century, a claim they use to argue (rightly) that deaf children today should have a right to education in sign language. Yet their own research reveals a much more piecemeal history in which attitudes toward sign language depended on the respective school founder: were they deaf or hearing and where did they receive their own education? This fine-grained picture is in accordance with recent research in European deaf history that has made visible variations in approaches to deaf education between the apparent monoliths of French manualism and German oralism.[2] The history of French schools for the deaf also shows the important role of the church and religious orders in providing education and the effect of secularization during the late nineteenth century. Here, as elsewhere throughout the book, there is a missed opportunity to engage with French social and political history. As it is, the authors just mention in passing that there might be a connection between the insistence that deaf people speak French and the wider policy of linguistic unification during the French Third Republic, a theme that would have been well worthy of exploration. This is also a missed opportunity to engage comparatively with the larger scholarship on deaf history, for example, with Douglas C. Baynton’s work on deaf people’s changing position in the increasingly nativist nineteenth-century US, Forbidden Signs: American Culture and the Campaign against Sign Language (2011).

The second chapter, “Founders of the Deaf-World,” presents short biographies of fifty-one prominent deaf people and their affiliations with other deaf people and institutions. All but three of them are men. The entries are presented within five subchapters that aim to offer a periodization of French deaf history. Here, a short overview of the key events and developments characterizing each of these periods would have been highly useful. Instead, the reader has to piece together this information from the individual bibliographic entries. Of the five periods, the first three, covering the time before, during, and after Abbé de l’Epeé and Abbé Sicard reformed deaf education during the late eighteenth and early nineteenth centuries, cover ground typically described in the history of deaf education but offer the additional benefit of giving attention to the often overlooked and crucial role of deaf people. The following section on the “deaf revolt of 1830,” when students of the Paris School for the Deaf who, in 1830, protested against the fact that many of their teachers did not know how to communicate in sign language, has the most potential of offering new insights to deaf history in English.

The third chapter, “Ethnic Affiliation in the Deaf-World,” provides an overview of deaf organizations and the deaf press as important factors for establishing ethnic affiliations. The informative chronological list of nineteenth-century deaf organizations shows how widespread these were in France. The chapter also provides a short history of congresses on the deaf, where hearing people defined how deaf people should live, act, and learn. Most famous is the 1880 congress in Milan where hearing educators passed the resolution of banishing sign language from deaf schools in favor of the exclusive use of oralism. Lane and Hedberg contrast these meetings with the international congresses of the deaf—1889 in Paris, 1893 in Chicago, 1896 in Geneva, and again in Paris in 1900—where deaf people advocated for the use of sign language and for their right for equal participation in society. Whether one needs to define these meetings and their activities of “honoring founders, narrating legends, visiting cultural sites” as one of the “hallmarks of ethnic groups” is a more disputable claim (p. 146).

In chapter 3, Hedberg and Lane also look at the history of the French deaf press and its role in creating a sense of community. The opinions expressed in the different newspapers and journals reveal the debate and conflict among deaf people between sign language versus oralism and about deaf people’s role in society. The authors attribute this “extensive in-fighting” to the “truth … that when an ethnic group cannot safely express its anger to its overlords, it will express that anger instead to its peers in ‘horizontal’ violence” (p. 150). Certainly, these conflicts mirrored the values of the larger hearing society, but this interpretation fails to engage with the by now considerable scholarship on multiple, intersectional, and sometimes conflicting deaf identities. Readers might like to know, for example, how French deaf people’s identities were affected by the stark political and social changes in nineteenth-century France—revolution overturning monarchies, the founding of the Third Republic and its mission of cultural unification, and the shift from an agrarian to an industrial society. Likewise, it would have been useful to see an exploration of deaf people as part of different communities, as, for example, Mark Zaurov has shown for German deaf Jews in Gehörlose Juden: Eine doppelte kulturelle Minderheit (2003). Hedberg and Lane, in contrast, present a deaf history that is almost exclusively male and allows for no ambiguities or intersectional identities.

The fourth and final chapter turns to deaf people in the arts. Over almost thirty pages, it provides an interesting overview of their life and work and path into the arts. The mostly short biographic entries provide a starting point for future research on the influence of these deaf painters and sculptors on the French art scene in the nineteenth and early twentieth centuries. It is followed by a short appendix that lists the characteristics of ethnic groups and the ways French deaf people fulfill them, and, strangely, by a longer appendix doing the same for American deaf people. These two added-on parts highlight the tension or mismatch between the book’s chronological organization and content, and its claims about ethnicity, which often seem superimposed. Hedberg and Lane’s use of ethnicity is perplexingly one-dimensional, based on a rather simplified reading of Anthony D. Smith’s The Ethnic Origins of Nations (1986). Smith’s larger work, however, spanned the 1980s to the 2000s and was influenced by the ethnic revival of the 1990s and not the least by the attempt to understand the atrocities committed in the name of ethnic purity. These aspects of ethnic identities and communities, and with it the huge field of ethnic studies, are completely omitted by the authors. There cannot be any question that deaf people form sociolinguistic communities that need to be recognized and protected in their linguistic and cultural rights. Whether to call them ethnic communities seems to me mostly a matter of political framing in more or less receptive national settings. Pursuing this framework, however, warrants a critical and comparative engagement with the larger scholarship.

Notes

[1]. See Harlan Lane, “Ethnicity, Ethics, and the Deaf-World,” Journal of Deaf Studies and Deaf Education 10, no. 3 (2005): 291-310; and Harlan Lane, Richard Pillard, and Ulf Hedberg, The People of the Eye: Deaf Ethnicity and Ancestry (New York: Oxford University Press, 2011).

[2]. For example, see Florian Wibmer, “Zur Geschichte der Gehörlosenpädagogik in der Habsburger Monarchie,” in Zwischen Fremdbestimmung und Autonomie: Neue Impulse zur Gehörlosengeschichte in Deutschland, Österreich und der Schweiz, ed. Marion Schmidt and Anja Werner (Bielefeldt: Transcript, 2019), 323-50; and Rebecca Hesse, Alan Canonica, Mirjam Janett, Martin Lengwiller, and Florian Rudin, Aus erster Hand Gehörlose, Gebärdensprache und Gehörlosenpädagogik in der Schweiz im 19. und 20. Jahrhundert (Zurich: Chronos, 2020).

Citation: Marion Schmidt. Review of Hedberg, Ulf; Lane, Harlan, Elements of French Deaf Heritage. H-Disability, H-Net Reviews. January, 2021

Michael Rembis. Review of Wong, Alice, ed., Disability Visibility: First-Person Stories from the Twenty-First Century

Alice Wong, ed. Disability Visibility: First-Person Stories from the Twenty-First Century. New York: Vintage Books, 2020. xxii + 309 pp. $16.95 (paper), ISBN 978-1-984899-42-2

Reviewed by Michael Rembis (University at Buffalo (SUNY)) Published on H-Disability (January, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=55689

Disability Visibility: First-Person Stories from the Twenty-First Century is part of the larger Disability Visibility Project led by Alice Wong in partnership with StoryCorps, a national oral history organization. What began as a “one-year campaign” to record disabled people’s oral histories and archive them at the Library of Congress has grown into a multimedia movement (p. xvii). The Disability Visibility Project had approximately 140 oral histories on record with StoryCorps at the time Vintage published Disability Visibility in 2020. Wong admits that the project has “always been a one-woman operation,” but, she notes, “this doesn’t mean I do everything alone.” Collaborating and partnering with other disabled people is what makes the Disability Visibility Project thrive. The relationships forged through the project and the book bring Wong “epic, Marie Kondo-level joy.” Wong writes that what she has “always been hoping to accomplish is the creation of community” (p. xviii). With both Disability Visibility and the larger project of which it is a part, Wong is succeeding in achieving her goal.

Disability Visibility is a collection of thirty-seven first-person accounts of what it means to be disabled in an ableist world and of what it feels like to be part of a broad, and growing, disability community and of disability rights and justice movements. Most of the book’s entries are only a few pages. They range from the poetic to the pragmatic. They are all politicized in their own way. The essays in part 4 are more overtly political. Contributors identify as women and men, as queer and nonbinary, as black, as Asian, as white, or as some mix of racial-ethno-religious backgrounds. Some have been disabled all or most of their lives, others only for a few years. Authors identify as living with the effects of brain injuries, tumors, chronic illnesses, cerebral palsy, and spina bifida. A few identify as Deaf, deaf, blind, deaf/blind, or simply, and quite powerfully, as disabled.

As Wong notes at the outset, these are twenty-first-century disabled voices. Contributors are at ease using such words as “Crouzon syndrome,” “congenital idiopathic nystagmus,” “fibromyalgia,” “Ehlers-Danlos syndrome,” “dysautonomia,” “multiple sclerosis (MS),” “spasmodic dysphonia,” “lipomyelomeningocele spinal bifida,” “bipolar,” and “myalgic encephalomyelitis” (p. 263). Some contributors write about “having” cerebral palsy or a “rare genetic disorder.” Others lament loss and value recovery. A few refer to people as “able” and “able-bodied.” One writer calls the day she began taking psychiatric medication “one of the greatest days of [her] life” (p. 187). It seems from this collection of essays that the days when, as an act of solidarity and as a conscious disavowal of the “medical model,” we would limit our referential range to “disabled” and “non-disabled” are behind us. As Leah Lakshmi Piepzna-Samarasinha declares, we have “succeeded in getting more people to buy into being disabled” over the last thirty years and it has engendered a shift in focus and priorities of the most active among us (pp. 259-60). Our fight no longer seems to be with the medical gaze. We have moved from institutions, rehab centers, and doctor’s offices to “a million weird little groups and actions and projects”; from occupying federal buildings and lying in the streets, to using Facebook, Instagram and Twitter; from disability rights to disability justice (p. 260).

These essays suggest that the time may have arrived when in our academic and activist work we can begin to think of medicine as something other than a villain. Yet these essays also reveal that it is not the time to dissolve the divide between the fight for disability justice and the growing power and reach of a global medical-pharmaceutical industry. Every person on the planet should have access to reliable, efficient, effective, and informed health care when they need it. This does not mean, however, that disabled people must have their “activities of daily living” medicalized and made part of a “rehabilitation” plan. Our trips to the movie theater and the grocery store, our friendships, and our sex lives should not be scheduled and supervised by Medicaid Service Coordinators, nurses, physicians, and support staff (unless we request their presence). Disability Visibility provides a vision for some of the ways society can be restructured so that we all have access to the things, and the care, that we want and need without exposing ourselves to the damaging, and sometimes deadly, effects of living a marginalized and medicalized life.

The essays gathered in Disability Visibility are at once deeply social and communal, and intensely and intimately personal. Nearly all of the contributors write about the importance of love and relationships, and what some call “interdependence,” in forging and sustaining life—in thriving in a brutally ableist world. At the same time, each of the authors contemplates their own embodied life. They write about self-catheterization and incontinence; about trauma, fatigue, and overstimulation; about lying in bed for days, weeks, and even months; and about having their limbs moved by other people, or getting dressed or positioned in their chair, or having their ass wiped by someone who is there to help them. More than one author talks about the importance of having—and creating—clothes that fit disabled bodies properly. Contributors write about “brilliant disabled” brains, disabled poetics, and disabled praxis, about making “something disabled and wonderful out of the disabled knowledge our bodies and minds know” (pp. 153, 258). As more than one author notes, disability affects “every moment of our lives” (p. 152). Bearing witness to the ways disability shapes what we do, who we are, and how we think, these beautifully and lovingly crafted essays bring the limits of the “social model” into stark relief. Although none of the authors explicitly address the “social model,” the cumulative effect of this volume is a powerful unveiling of all of the benefits of thinking about more than just the external forces that constrain us. Perhaps more important, Disability Visibility pushes beyond an irreverent and romanticized rendering of all of the wonderful possibilities disability engenders to get to the gritty, and sometimes shitty, realities of disabled people’s everyday lives. As Britney Wilson’s essay on using paratransit in New York City reveals, we cannot afford to abandon structural and systemic change, but we must reenvision that change from a more radically embodied disability perspective. The essays in this volume show us that disability justice is social justice.

There are many wonderful affirming and provocative moments in Disability Visibility, but one particularly troubling passage has stuck with me. In her essay, Piepzna-Samarasinha writes, “I’m never eager for any disabled person to die, but I gotta say, if the old racist parts of white disability studies and disability rights die out—and they will—we will have an opportunity. Right now, the old Disability Rights guard is angry at disability justice people because … we aren’t racist and we’re not just focused on policy work…. What happens if we can take over the Centers for Independent Living, the disability studies programs—or make something entirely new and different?” (pp. 259-60). Now, in the midst of the disproportionate lived realities of COVID-19 and the divisive politics of the Trump administration, is not the time to be heralding the death of disabled people. When I think of an old guard in the fight for rights and justice, I think of Martin Luther King Jr. and Malcolm X, of Bayard Rustin and A. Philip Randolph, of Sojourner Truth and Ida B. Wells, of Cesar Chavez, Angela Davis, and Shirley Chisholm. I think of Stonewall. I think of the hundreds of thousands of disabled people forced to survive and ultimately die in institutions. I think of people like Judy Heumann and Ed Roberts, who had to fight just to go to school with their friends and neighbors. I think of the nine black teenagers who walked into the high school in Little Rock in 1957. I think of the Section 504 sit-ins, and the Black Panthers, who provided hot meals to the disabled folks in San Francisco so that they could persist in what became the longest occupation of a federal building in US history. I think of places like Warm Springs, the campus of the University of Illinois, and Berkeley, where people were able to come together to form friendships and build a movement. I think of kids dragging themselves up the Capitol steps because they wanted Congress to pass the Americans with Disabilities Act. I think of the activists in ADAPT (American Disabled for Attended Programs Today) who got out of their chairs and laid on the ground in front of buses, or crawled up the bus steps. I think of the policy changes that were required to close the hundreds of “snake pits” throughout the country and to send disabled kids to school. And I think of the policy changes that will be needed to end the police murder of disabled people of color and to free the tens of thousands of people (mostly people of color) with developmental disabilities and mental health problems incarcerated in jails and prisons. We cannot have justice without rights, and we cannot have rights without changes in policy. The dominance of white (and I would add elite heteronormative) disability studies must end; there has been every indication over the last decade and a half that it is ending. We do not need to wish for the death of our disabled elders, or of anyone else, to make that happen.

Stacey Milbern, in her essay, has offered an alternative way to think about the past and those who have come before us. She writes that she thinks about “crip ancestorship” often (p. 268). Her ancestors are “disabled people who lived looking out of institution windows, wanting so much more for themselves.” She believes that our disabled ancestors “laugh, cry, hurt, rage, celebrate with us.” Most important, she believes that our ancestors “learn as we are learning, just as we learn from them.” Milbern writes that “We grow knowledge and movements with them. We crip futurism with them. We demand and entice the world to change the way things have always been done, with them. We change ourselves with them. They learn through us. When we become ancestors, we will also continue to learn” (p. 269). We all live and learn together.

Disability Visibility is a barometer, a bellwether and a beacon. Each of its entries reveal in beautifully rendered prose and poetry a measure of our current climate. Taken collectively, the essays show us where we need to go. Wong’s curatorial brilliance is a welcomed guiding force. A hope that I hold for the next volume is a deeper engagement with more ordinary disabled folks. Wong culled thirty-two of the thirty-seven essays included in Disability Visibility from other sources. The contributors to this volume are professional writers, research scientists, university professors, medical doctors, Ivy League educated lawyers, and presidential appointees. One writer was named “Person of the Year” and another a “Top 30 Thinker Under 30.” One writer spent one hundred thousand dollars on a “chair and the van to transport it” (p. 131). Some of the authors included in this volume are able to live their lives on “crip time” without worry of losing an hourly wage. It is delightful to see disabled people reach such heights of relevance and influence, but we also need to hear from those folks who do not have nearly as impressive credentials. This is something of which Wong and her contributors are well aware. Most of the contributors are mindful of their own privilege, and Wong writes that while the recently achieved visibility of disabled people is “exciting and important, it is not enough.” She encourages us to “expect more.” “We all deserve more,” she writes. Wong demands that there must be “depth, range, nuance to disability representation” (p. xxi).Disability Visibility provides readers with depth, range, and nuance in its rendering of disabled lives. It pushes us into our future. It should become essential reading for anyone involved in social justice movements.

Citation: Michael Rembis. Review of Wong, Alice, ed., Disability Visibility: First-Person Stories from the Twenty-First Century. H-Disability, H-Net Reviews. January, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=55689