Thompson on Burch, ‘Committed: Remembering Native Kinship in and beyond Institutions’

Author: Susan Burch Reviewer: Lauren Thompson

Susan Burch. Committed: Remembering Native Kinship in and beyond Institutions. Critical Indigeneities Series. Chapel Hill: University of North Carolina Press, 2021. 222 pp. $95.00 (cloth), ISBN 978-1-4696-6161-2

Reviewed by Lauren Thompson (Georgia State University) Published on H-Disability (November, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

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Committed: Remembering Native Kinship in and beyond Institutions is a model of how to write histories that are as inclusive and broadly accessible as they are necessary. Centering this study on the period 1902-34, Susan Burch sensitively conveys the story of the Native adults and children confined to the Canton Asylum for Insane Indians, established in South Dakota under the auspices of the US government. The volume notes on a cover page that “this book embodies a commitment to access, to conveying content with as few barriers as possible. Access is a practice, not a checklist.” Burch “intentionally use(s) accessible language,” has chosen a font that maximizes legibility, and includes alt-text to convey transcriptions of the included photographs.

The book weaves together Native history, histories of medicine and institutionalization, and analyses of settler-colonialist frameworks to tell the story of the people and their families who experienced forced removal and involuntary confinement at Canton. Burch is careful to note that this is not a “neutral or balanced account of history” (p. 21). Instead, “this is an active effort to honor those who appear in this book as well as the many others whose stories converge, if less obviously, in its pages” (p. 20). Through informal phone and written correspondence, more formal oral histories, family visits, and material culture analysis, Burch meticulously constructs a story of kinship, cross-generational experience, and first-person accounts of life inside and after the asylum. It is both gripping and heartbreaking to read, and her central point is that the “slow violence” of institutionalization left lasting effects on families long past the hospital’s 1933 closure (p. 84).

Divided into six chapters, Committed opens with the forced removal of Elizabeth Faribault, a member of the Sisseton-Wahpeton Band of Dakota Nation. One morning in May 1915, officials arrived at her home to force her to go to Canton, citing evidence that she was alcoholic and insane. When Elizabeth’s husband, Jesse, arrived home, he discovered his wife missing and their two youngest children left home alone. What follows is both a story of generational trauma and the family’s efforts at healing and reclaiming sovereignty.

Burch traces Faribault’s life in the asylum, including the birth of her daughter, Cora Winona, in 1926, eleven years after Faribault was first incarcerated. In 1928, Faribault died, leaving Cora in the care of the asylum staff for two more years until she was removed to an orphanage in Arizona at the age of four. Educated at the orphanage and Indian boarding schools, Cora eventually became pregnant as a teen and gave birth to a son in 1945. At first, they lived in Phoenix’s Florence Crittendon home, part of a national organization of Crittendon homes in the United States that provided maternity care, vocational training, and moral education to “fallen women” and their children. White Crittendon staff encouraged her to relinquish her parental rights and her son was ultimately adopted by a white family. He had no more contact with Cora or other Faribault family members. Burch’s account reveals a family story of loss, separation, and forced confinement that spans three generations, all triggered by the events of a single day when officials from the Bureau of Indian Affairs made their fateful decision about Faribault. Unfortunately, there were many days and many families where this kind of decision making was repeated with long and violent consequences.

Underlying the intimate family stories that make up this book are Indian and white conflicts. Government institutions like the Bureau of Indian Affairs sought to categorize, contain, assimilate, and ultimately erase whole tribes. The processes of removal undermined kinship ties, broke up families, and made instability a core feature in these families’ daily lives. Ironically, life within the Canton asylum, however, was known for its monotony and endless cycle of compulsory labor and chores that the staff required patients to complete. Of one individual confined, Burch writes, “Mundane, hourless time pulled on her, as it did every confined person at the Indian Asylum” (p. 71). Many of the patients, including Faribault, were subject to harassment and physical and sexual violence. They fought back—escaping, only to be captured and returned within days to even more restrictive measures. The author illustrates the bleak landscape of asylum architecture, writing, “By design, detention penetrated every level of the institution. Padlocked wards, secured windows, walls, and fences held people within its grounds. On a routine basis, straightjackets, shackles, and iron beds, as well as ward attendants, subdued numerous individuals” (p. 68). Patients were rarely returned to their families, many of them dying while institutionalized and then buried in unmarked graves on the grounds.

For the family members and descendants of the patients at Canton, their ancestors are both “absent and present, surfacing partly and poignantly” in memories, photographs, and family heirlooms. The next generation has since “worked to close the gaps that institutionalization had laid open” (p. 90). The families explain to Burch that telling their ancestors’ stories repeatedly is healing—a form of finally reclaiming what was not just lost but removed on purpose.

Through these individual stories, Committed reveals broad, interwoven histories of the power of the state over indigenous populations and the making of disability and the unfit in pursuit of settler values. By explaining in an accessible way the impact of these transformations over time, Burch helps us better understand the long reach of institutionalization within the lived experiences of multiple generations of indigenous families. This is a powerful book precisely because it is less of an academic history than it is an explanation of how people attempted to grapple with systems of power and coercion at a particular time and place. This is not to say that Burch does not rely on meticulous primary and secondary sources to make the case; indeed, her carefully researched footnotes add welcome detail and nuance to the main text.

For readers looking for deeper, more elaborated histories of eugenics, disability, incarceration, or Native American history, there are many more traditional scholarly sources to find further information. But in Committed, Burch adds only what is necessary for context so that the reader can more deeply understand the people and their experiences at the heart of these histories. In returning Elizabeth, Cora Winona, and the other individuals she discusses to the center of the book, Burch presents not only the forces that shaped them but also the ways these individuals responded, survived, and attempted to reclaim their lives.

Citation: Lauren Thompson. Review of Burch, Susan, Committed: Remembering Native Kinship in and beyond Institutions. H-Disability, H-Net Reviews. November, 2021. URL:

Oates on Joshua, ‘Physical Disability in British Romantic Literature’

Author: Essaka Joshua Reviewer: Rosamund Oates

Essaka Joshua. Physical Disability in British Romantic Literature. Cambridge Studies in Romanticism Series. Cambridge: Cambridge University Press, 2020. x + 302 pp. $99.99 (cloth), ISBN 978-1-108-79917-1

Reviewed by Rosamund Oates (Metropolitan Manchester University) Published on H-Disability (November, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

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Essaka Joshua’s new book is a work of two parts. Part of the Cambridge Studies in Romanticism series, Joshua’s monograph is firmly located in the literary criticism tradition. Throughout, she draws on disability theory to provide new interpretations of important eighteenth-century texts, ranging from the political and social manifestos of Mary Wollstonecraft (1759-97) and William Godwin (1756-1836) to novels by Frances Burney (1752-1840) and Mary Shelley (1797-1851). Along the way, she teases out some of the complexities of contemporary ideas of “deformity” and the “picturesque,” locating her analysis in the broader context of Romantic thought. Throughout, Joshua balances her reexamination of these texts with detailed critiques of earlier literary criticism, particularly those whose reading of physical impairment and disability may be seen as anachronistic or ableist.

The second theme running throughout the book is one that has wider implications, and whose significance should be felt beyond the field of Romantic literary studies. Joshua convincingly argues that many early modern histories of disability are inherently flawed, using anachronistic concepts and terms to analyze what Joshua describes as a “pre-disability era.” Instead, Joshua tries to explore bodily impairment using the terms that had meaning in the eighteenth century, namely, “deformity,” “weakness,” and “monstrosity,” as well as related concepts like “capacity” and theories of the picturesque. A clear and robustly argued introduction sets the reader up for her nuanced discussions of these various terms throughout the book, with the different threads brought together in a confident conclusion.

One of the challenges facing Joshua in this book is the balance between the two elements. As she herself writes in the introduction, her work is “a revisionist approach to Romantic studies, [and] it is just as much a rethinking of disability studies’ approach to history” (p. 5). While chapters 1 to 6, which offer detailed case studies of a range of texts, might be of more interest to literary critics, the introduction, conclusion, and an excellent appendix speak more generally to the disability historian. In the appendix, Joshua explores dictionary definitions of “disability” and “deformity,” noting that “no critical work has been done on eighteenth-century and early nineteenth-century dictionary definitions of ‘disability’ and other relevant terms” (p. 185). What follows is a thoroughly fascinating discussion of the different meanings and uses of the word “disability,” as well as a critical analysis of the Oxford English Dictionary’s claims about usage. I hope that Joshua will be inspired to take this research further. Not only does her work in this section challenge how we analyze and identify “disability,” but she also shows that assumptions about binaries are often wrong. The appendix demonstrates that words we consider to be opposites (for example, able and disable, normalcy and disability) often come into being hundreds of years apart. This section also includes an illuminating discussion about wounded soldiers, care for veterans, and the use of the word “disabled” (particularly relevant for an earlier discussion about William Wordsworth’s “Discharged Soldier” [1798]). I only wish that this fascinating and important section was longer, and I suggest reading it before chapters 1-6; many of the ideas Joshua addresses in the main text are made explicit here.

At the heart of Joshua’s thesis is her argument that the term “disability” is not helpful in exploring attitudes toward, and experiences of, bodily impairment or difference in the Romantic period (and presumably earlier too). Drawing on terminology used in Romantic studies, she refers to the eighteenth century (and implicitly earlier) as a “pre-disability era.” She defines this as a time before the word “disability” was used to refer to the causes of inability rather than the “inability” itself. Joshua also points out that histories of disability are actually accounts of “specific bodily or mental configurations that are now clustered under the general category of disability” (p. 1). As a result, Joshua demands that we untangle our modern meanings of “disability” as a descriptor and as a term of analysis. Instead, she proposes that we are led by contemporary terms and, moreover, that we are sensitive to how the implications of those terms—like “capacity” and “deformity”—change depending on social context. As Joshua neatly puts it, “a disability studies approach that does not use the term ‘disability’ allows us to recover pre-disability concepts” (p. 3).

So, what are some of these words and concepts? Well, Joshua provides a nuanced reading of a range of texts, examining the terms used to describe bodily difference, “abnormality” and “deformity.” She takes a range of different works as case studies to analyze different ideas and words. She draws on the writings of the British radical William Godwin to explore the concept of “capacity.” Using his most famous work of political philosophy, An Enquiry Concerning Political Justice (1793), as a starting point, Joshua examines how Godwin used “capacity” as a measure of social value. Putting Godwin in his broader intellectual context, it becomes clear that for Godwin, “capacity” is closely related to physical and mental ability. Social value—which is determined by the ability to contribute to the “general good”—appears, therefore, to be a function of “able-bodiedness and able-mindedness.” Those with physical and cognitive “incapacities” are apparently excluded. Joshua stresses that this ableism is not a result of a belief in a “norm” but rather the product of Godwin’s vision of the “general good”: a more nebulous, but no less powerful, concept.

Joshua then turns to Godwin’s wife, Mary Wollstonecraft, to explore how Wollstonecraft understood capacity as existing in three senses: social, intellectual, and physical. In Wollstonecraft’s writings—most notably her Vindication of the Rights of Women (1792)—women deserved equality because of their potential capacities. Again, corporeal and cognitive ability underpins Wollstonecraft’s vision of an equitable future. Academics have already drawn on disability studies to analyze Wollstonecraft’s work. Douglas C. Baynton, for example, has demonstrated that nineteenth-century suffragettes used ideas of disability to argue for emancipation (arguing that since women were not disabled, they deserved the vote, and further, that women were “disabled” by society).[1] Joshua addresses this analysis and complicates it by exploring Wollstonecraft’s vision of weakness and its apparent opposite, vigor. As Joshua argues for Wollstonecraft, “weakness [w]as a category of exclusion before disability emerged as a concept” (p. 95).

The next interesting case study is Frances Burney’s novel Camilla (1796). While Burney’s novels are well known for exploring female identities, Joshua focuses on Burney’s depiction of the physical “deformity” of one of the characters, Eugenia, in Camilla. Eugenia was dropped by her uncle in childhood and acquired a spinal injury, leading to a limp and restricted growth. She also caught smallpox, and her face bore the scars of her illness. As a result, Eugenia was routinely dismissed, pitied, and mocked for her “deformities.” Burney was acutely aware of the difference between a bodily condition and the social construction of disability; in the novel it is only when Eugenia grows up that she becomes aware of the social significance of her “deformity.” Joshua argues that this illustrates an early sense of the “social model” of disability and sets it in the context of functional and aesthetic meanings of disability. Her analysis here is part of a larger discussion of the meaning of “deformity,” drawing on theories of the picturesque to think about ideas of “deformity,” ugliness, and their opposites.

The influence of deformity as a term of analysis continues into the last chapter when Joshua explores Mary Shelley’s novel Frankenstein (1818). Joshua points out that, whereas deformity is largely a matter of aesthetics, “monstrosity” is a “physiological and mythological” category. However, both are used in contemporary and critical discussions about Frankenstein and in the elision of moral virtues and physical features. While Joshua addresses this, she focuses on “transformative vision,” drawing on Rosemarie Garland-Thomson’s work on “staring at the other” to argue that critics have ignored the importance of sight in Frankenstein (p. 155).[2] Joshua asks whether “blindness” removes prejudice, addresses the creature’s search for a sympathetic viewer, and highlights “Shelley’s interest in how looking constructs monstrosity/deformity” (p. 178).

Joshua uses writing about disability and disability theory to bring a new perspective to her analysis of these texts. As a result, this is an important contribution to literary criticism of the Romantic era. There is a larger historical significance too in her careful reading of the nuance of language and the evolution of terminology we use in our discussions of disability history.


[1]. Douglas C. Baynton, “Disability and the Justification of Inequality in American History,” in The New Disability History: American Perspectives, ed. Paul K. Longmore and Laura Umansky (New York: New York University Press, 2001), 33-57.

[2]. Rosemarie Garland-Thomson, Staring: How We Look (Oxford: Oxford University Press, 2009).

Citation: Rosamund Oates. Review of Joshua, Essaka, Physical Disability in British Romantic Literature. H-Disability, H-Net Reviews. November, 2021. URL:

Dale on Piepmeier and Estreich and Adams, ‘Unexpected: Parenting, Prenatal Testing, and Down Syndrome’

Author: Alison Piepmeier, George Estreich, Rachel Adams Reviewer: Pamela L. Dale

Alison Piepmeier, George Estreich, Rachel Adams. Unexpected: Parenting, Prenatal Testing, and Down Syndrome. New York: New York University Press, 2021. xxiv + 171 pp. $89.00 (cloth), ISBN 978-1-4798-7995-3

Reviewed by Pamela L. Dale (University of Exeter) Published on H-Disability (November, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

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This is a remarkable book that raises incredibly difficult questions for and about individuals, their families, and the way societies treat some of their most vulnerable members. It is, in many ways, a painful read, although much of the content is warm, inclusive, and genuinely hopeful. The narrative style is very readable and engaging. Unlike some academic texts dealing with “disability issues,” I would not hesitate to recommend this book to people on the same journey as Alison Piepmeier and her family. She shares incredibly personal insights and experiences and has strong views about the care of her daughter and the rights of all disabled people. While Piepmeier rages against the inhumanity and hypocrisy of organizations that could and should support all families but instead operate discriminatory policies, she remains totally supportive of the choices made by individuals.

Piepmeier is completely nonjudgmental and has inspired sufficient confidence in her interviewees for them to share deeply personal decisions that reveal their attitudes toward their reproductive choices and their experiences of caring for disabled children. The book is an incredibly rich source of material for future studies. These will surely follow because the contradictions between the rapid advance of prenatal screening technologies and the current trend to restrict abortion laws in the United States are creating an ethical minefield in a rapidly changing terrain that individuals, families, doctors, activists, and legislators will need support to navigate. Piepmeier makes a very convincing argument that these issues are of fundamental importance to all of us interested in protecting and advancing the human rights of people living with disabilities. However, she also suggests that to be heard in debates that attract strong passions and loud voices in support of entrenched positions, we need to work harder and smarter to bring the insights available from thoughtful and inclusive disability studies to new audiences.

To this point I have treated Alison Piepmeier as the sole author. This accreditation reflects the fact that the book is centered on her personal story. It also explicitly draws on both an incomplete manuscript begun by Piepmeier and the legacy of her lifetime of academic and other writing across a range of topics. Tragically, Alison Piepmeier did not live to complete her project and it is her co-authors, George Estreich and Rachel Adams, who managed to produce a book that both honors Piepmeier and successfully finds its own unique voice. This is a different book to the one Piepmeier would have written, a point explicitly made at various points in the text by her co-authors, but it is perhaps all the more valuable for that as the sense of conversation and challenge is heightened by the interaction of the three authors.

The main conclusion that I took from the book was the sheer complexity of the issues raised and the difficulty of coming to a firm position on any, let alone all of the debates that the book introduces. Unexpected certainly offers a nuance that is too often missing from other publications. I was reading about Piepmeier’s experiences of both prenatal testing and parenting her daughter during the same weekend that I picked up a magazine supplement with a Sunday newspaper. In the “real life” section three women shared their stories: “We all think we had our babies at the right age!” The lady interviewed as the older mother explicitly mentioned seeking tests for Down syndrome because she had decided that “having a baby with special needs wouldn’t be fair.”[1] Like Piepmeier, I totally accept that the woman was making a valid personal choice based on her family circumstances, but I wonder if the magazine’s readers fully understand that the potential implications of this decision were a fairly late (even second-trimester) abortion to deliberately prevent the birth of a disabled baby who might otherwise have had many decades of life. Piepmeier does not shy away from these issues, and instead problematizes them.

Here the non-US reader can encounter some difficulties because Unexpected is unashamedly grounded in US policies and procedures and therefore the context for decision making is provided by legal frameworks and healthcare systems that feel very alien. This problem is heightened because Unexpected is deliberately speaking to an American audience, seeking change from within the system, and assumes a level of prior knowledge not necessarily available to international readers. In several places I wanted and needed more details to fully understand the points being made about, for example, unequal access to prenatal screening (presumably linked to insurance coverage) and the implications of this. The emphasis on the unanticipated consequences of rampant commercialization within this sector in the United States registered as important, but mercifully of limited relevance to the UK experience—at the moment.

However, many of the wider issues considered in Unexpected transcend national borders. Chapter 2, titled “The Inadequacy of ‘Choice’: Disability, Feminism and Reproduction,” was particularly thought-provoking. Second-wave feminism certainly prioritized reproductive choices but, given the constraints that many women live under, the supposed choice is actually no choice at all and the fallacy of having a choice may well be experienced by individual women as disempowering. Piepmeier brings some really interesting theoretical analysis as well as personal insight to these issues although her immersion in current US political debates over abortion can sometimes be confusing for outsiders. However, the UK reader should be careful about dismissing these issues as irrelevant to them, as abortion laws in Northern Ireland have recently been hotly debated in ways that have not consistently emphasized the rights of women but have tended to distinguish between normal and “other” pregnancies without fully explaining the implications of this approach. The views of people living with disabilities and the parents of disabled children have certainly not been central to the media coverage of this topic.

While Piepmeier is not the only scholar and activist seeking to move the debate away from a narrow and problematic focus on women’s rights to a much wider commitment to reproductive justice, she does offer particularly powerful and unusual testimony that urgently needs to become a much bigger part of the conversation. Having shown that women’s right to choose is often no choice at all, as some women’s circumstances force them to either terminate or continue a pregnancy with little reference to their own needs and preferences, it is both interesting and important to note how notions of reproductive justice seek to empower individual women while including, rather than excluding, consideration of the rights and well-being of other actors. Chapter 2 comprehensively reviews the relevant historiography, with particular emphasis on disability issues, and discusses its potentially transformative power in terms of current political debates. Yet, for all the attention given to changing the “big picture,” Piepmeier never loses sight of the individuals and families who are most closely affected by these issues.

In the UK, we prize the National Health Service (NHS) and celebrate its universalism and supposed inclusiveness. However, all the evidence suggests that, historically, the NHS has not treated disabled people well. People living with learning disabilities have, arguably, suffered from too much medical control (particularly in the era of large-scale, long-stay institutions) and too little medical care (with medical neglect a factor flagged by various inquiries into the premature death of patients now as well as in the past). In these circumstances, it seems that disabled people will not be the beneficiaries of prenatal screening as the NHS expects women to “choose” to terminate pregnancies where testing suggests “problems.” I had not fully grasped the thinking on this point until I attended a conference sometime around 2005 where two young female doctors working on a new screening program for a genetic marker (not Down syndrome) linked to a severely disabling and life-limiting condition in boys explained that the very costly test was only justified in terms of the lifetime care costs saved by terminating all the affected pregnancies. The doctors, who chose to present themselves as being on a mission to prevent human suffering, went on to explain their surprise that many of the patients they worked with did not automatically go down the abortion route but had to be “encouraged” to do so. Parents who expressed the hope that prenatal diagnosis would allow them to “prepare for the birth and afterwards” or “seek a cure” were presented to an increasingly hostile conference audience (mostly academics, not medics) as dangerously deluded.

Piepmeier draws on her own life experiences to explain how attitudes to a much-wanted pregnancy do not necessarily change just because healthcare professionals start to talk about problems. In this context, extra scans and hushed consultations become an unwanted and even unwarranted additional source of anxiety for the mother and her family. Drawing on the experiences of her interviewees as well as herself, Piepmeier reveals that many doctors are surprisingly ill-informed about the real-life experiences of people living with disabilities, and their pessimism (and in some cases barely concealed hostility to disabled people on eugenic or other grounds) was a huge problem for would-be-parents to cope with. This is obviously true, but I think Unexpected misses the opportunity to make the link to the burgeoning literature exploring many women’s negative experiences of medicalized pregnancy and birth distinct from any mention of disability issues. The problem for parents of disabled children is that the intrusive, but often unhelpful, involvement of health professionals can be more intense and continue for longer than that experienced by other families. Piepmeier tries to make the case that we should make less of a distinction between the needs of all children and children with special needs as a step toward embracing, rather than rejecting, notions of human diversity.

This works to a point, but Piepmeier’s argument that all parenting necessarily involves a great deal of personal sacrifice, unremitting hard work, and uncertain reward is not necessarily going to encourage would-be-parents to take the plunge or help with any specific difficulties encountered when parenting a child with disabilities. Piepmeier writes from the perspective of a committed feminist as well as a disability advocate. She draws from both theoretical traditions for creative inspiration and practical support, and through commitment to ideas of, for example, reproductive justice, creates a space where women and their children, and indeed others, can be empowered and have their rights respected and needs recognized and met. However, not everyone sees a straightforward alignment between feminist priorities and the well-being of other groups in society, and some of the well-known tensions between women’s rights and the care needs of others are not fully unpacked in Unexpected. My concern was that many of the arguments for better support for families implicitly assumed that more domestic help and childcare should be made available. The inequalities in terms of accessing this provision were briefly touched on, but the potential to exploit vulnerable workers employed as caregivers and the quality of care likely to be provided by overworked, undertrained, and poorly rewarded staff received barely a mention.

It is a paradox that people who are able to write about the challenges of parenting a disabled child tend to have far more resources available to help them than families we can only learn about through other means. Piepmeier is a particularly impressive scholar, but admits that she shares much in common with the writers of the parental narratives she surveys in chapter 4. Many of them are unrepresentatively white, middle class, and well educated (often with a liberal arts background). With Piepmeier’s project curtailed by her illness, she is only able to consider a limited number of narratives, but, in fairness, this is a major limitation of the whole genre. Despite Piepmeier’s validation of the choices made by individuals, she also makes clear her growing frustration with the published memoirs of parents of children with disabilities. While these can be an important source of information and support for other parents, they can also “fortify cultural stereotypes that portray children with disabilities as damaging forces in their parents’ lives” (p.81).

While I totally understand why Piepmeier had to limit the number of parental narratives she surveyed, it is disappointing that she tended to concentrate almost exclusively on fairly recent publications from after the year 2000. There is a long tradition of such writing, and in the UK there is a considerable body of work that draws on both the original texts and the changing commentary on them offered by different generations of scholars from a variety of backgrounds. While many of the titles are discouraging, using outmoded and now offensive terminology, we cannot simply dismiss the experiences they capture. The pioneers of parental memoirs did not face the same choices as those undergoing prenatal screening today, but important themes such as learning that your child might have, or has, a disability, acceptance and rejection, telling other people, seeking support, learning to parent, making decisions for the future, are all present.

One reason why Piepmeier rejects some of the negativity of the parental accounts is that she argues that pioneer parent advocates and activists (a group that includes some, but by no means all, of the writers of early parental narratives) have changed the history so that later generations have to struggle less and can enjoy more. I must admit that I think this conclusion is wildly optimistic. The chronic undervaluing, exclusion, neglect, and abuse of disabled people is a continuing scandal that tends to be blamed on resource scarcity, but the fear and hostility that some actors exhibit toward people living with learning disabilities seems more deep-seated than this.

Piepmeier usefully draws attention to the way some parents of autistic children seek to explain their experiences in a way that unwittingly denigrates and dehumanizes people living with Down syndrome. This is an important point, and Piepmeier carefully explains how and why the published memoirs she draws attention to seem constrained and constricted by an implicit acceptance of a medical model of disability and “the powerful hold that formulaic narratives have” (p. 82). I quite understand that she wants us all to work together to change the narrative, but we need better stories to tell about disability issues as well as new ways of telling them. Piepmeier’s later writing captured the often optimistic phase of middle parenting, when the overwhelming needs of infancy are in the past but the struggles of adolescence are only dimly perceived. Rachel Adams, in chapter 6, poses the interesting idea that Piepmeier’s thinking on reproductive rights might well have developed over time to reflect her daughter’s progress through adolescence into womanhood. Adams reminds us of the grim history of reproductive controls (in the supposedly liberal West in the present as well as under overtly eugenic regimes in the past) that underline the failure to respect basic human rights, let alone to value diversity.

Unexpected certainly does not shy away from the idea that problematic policies and attitudes today have deep historical roots, but as a historian I found the focus on the post-2000 world a bit limiting. It was a least a generation before, in the 1980s, that prenatal screening and its implications were first discussed by advocates and activists (some but not all of them parents) in the context of Down syndrome. I still often revisit Joyce Mepsted’s book Your Child Needs You: A Positive Approach to Down’s Syndrome.[2] It discusses and problematizes genetic screening, and I think the authors of Unexpected would value its positivity and the dignified representation of children from birth to adulthood who are shown engaged in constructive activities such as reading, using a computer, riding a bike, and driving a car, activities that are rarely associated with Down syndrome. However, the authors of Unexpected encouraged me to see something I had not previously noticed. All the images in Mepsted’s book show the children either alone, in the company of other disabled children, with parents or siblings, or with adult helpers. No other children or adults are depicted, and their absence is problematic.

Piepmeier challenges the isolation and exclusion of disabled children in chapter 3, which is curiously titled “The Welcome Table.” She explains how the word “table” recurred in conversation after conversation about disability issues and how the metaphor of the welcome table worked for her. I am usually quite hostile to using complicated metaphors—the world of learning disabilities (and the care sector in general) already suffers from an excess of jargon that acts as an unnecessary barrier when families want to understand what help is available, and it even prevents different groups of care professionals from successfully communicating with one another. However, the “table” metaphor manages to be simple, clear, and remarkably powerful as an explanation of the difficulties families face now and their aspirations for the future.

Piepmeier was fascinated by words and her co-authors help explain how she used the power of language to capture her own illness experience as well as explore disability issues. Unfortunately, the promise of this work, especially the important differentiation between illness and disability, was not fully realized because of the seriousness of Piepmeier’s condition and her premature death. However, in different and really interesting ways her co-authors pick up the baton and use Piepmeier’s work to challenge future scholarship to fully engage with these themes. Unexpected is about a deeply personal journey, but it offers a starting point for a radical rethink of how we think and write about Down syndrome now and in the past.


[1]. Susanna Galton and Josie Copson, “We All Think We Had Our Babies at the Right Age!” Notebook: The Sunday Mirror Magazine, August 15, 2021, 16-17.

[2]. Joyce Mepsted, Your Child Needs You: A Positive Approach to Down’s Syndrome (Plymouth: Northcote House Publishers, 1988).

Citation: Pamela L. Dale. Review of Piepmeier, Alison; Estreich, George; Adams, Rachel, Unexpected: Parenting, Prenatal Testing, and Down Syndrome. H-Disability, H-Net Reviews. November, 2021. URL:

Geoffrey f. reaume. review of simon jarrett, those they called idiots: the idea of the disabled mind form 1700 to the present day.

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)

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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: This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Jessie Hewitt. Review of Marty Fink, forget burial: hiv kinship, disability, and queer/trans narratives of care.

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)

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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: This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.