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Daniel J. Wilson. Review of Downey, Dennis B., Pennhurst and the Struggle for Disability Rights

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Dennis B. Downey. Pennhurst and the Struggle for Disability Rights (Keystone Books). University Park: Pennsylvania State University Press, 2020. xviii + 269 pp. $35.00 (cloth), ISBN 978-0-271-08603-3. 

Reviewed by Daniel J. Wilson (Muhlenberg College) Published on H-Disability (March, 2021) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=56111

Dennis Downey and James Conroy have produced a volume that traces the rise and fall of Pennhurst State School and Hospital (1908-87) as a residential institution for individuals who were developmentally disabled. In eleven essays, plus an introduction and conclusion, this book provides a detailed examination of the rise of institutionalization for individuals classified as feebleminded and epileptic in the early twentieth century and the conditions and changing conceptions of treatment that closed Pennhurst some seventy years later. Pennhurst, a state institution near Philadelphia, Pennsylvania, is particularly significant because the court cases that forced its closure in the 1970s and 1980s proved to be important support for the rise of disability rights. 

In their introduction, Downey and Conroy argue that the establishment of Pennhurst as a residential institution in 1908 was part of a Progressive reform growing out of the eugenics movement to protect society from the perceived danger of the feebleminded and epileptic reproducing and weakening the nation. If they could not be eliminated, at least they could be removed from society, supposedly for their own good and the improvement of the nation. Over the next seventy years, over 10,000 individuals were institutionalized at Pennhurst, many of whom spent most if not all of their lives behind its walls. Whatever the initial promise of institutions like Pennhurst, the reality was quite different and appalling. Pennhurst was always underfunded and understaffed, less impaired residents were forced to work for no wages to maintain the institution and care for custodial residents, and physical and sexual abuse was common. However wretched the conditions, Pennhurst continued to expand so that at its height it had over 3,500 residents with only 600 caretakers. The walls of secrecy were breached in 1968 when Bill Baldini, a young reporter with a Philadelphia television station, was able to film and broadcast a five-part expose from inside Pennhurst. This series helped initiate numerous inquiries into conditions at Pennhurst that led to families and other advocates on behalf of the residents filing lawsuits that ultimately forced the closure of Pennhurst and the transfer of all of its residents to community living situations. These federal lawsuits, along with legislative initiatives such as Section 504 and the Americans with Disabilities Act, put legal support under the growing disability rights movement.

The essays are arranged in three sections: “Pennhurst in Time and Place,” “The Power of Advocacy,” and “A View Toward the Future.” In “The Idea of Pennhurst: Eugenics and the Abandonment of Hope,” Dennis Downey sketches the intellectual, medical, and political background to the establishment of residential institutions like Pennhurst in the early twentieth century. Social reformers, doctors, scientists, and university-based experts “forged a new consensus, a new descriptive terminology that redefined the purpose of institutionalization as a permanent preventive measure aimed at protecting society from those who threatened biological and social progress” (p. 18). Many of the advocates of institutionalization considered themselves, and were considered by others, to be Progressive reformers. As Downey puts it, “this convergence of modern science, eugenics, and public health reform … was one of the most striking developments in public policy in the Progressive era (1890-1915)” (p. 22). These experts advocated three approaches to preventing the eugenic threat to American progress: “elimination through sterilization, segregation through institutionalization, and regulating the right to marry” (p. 27). Although Pennsylvania saw some of the earliest forced sterilizations, public support for the procedure was never strong and institutionalization emerged as “politically the most palatable solution to the perceived rising tide of feeblemindedness” (p. 29). The freedom and liberty of individuals with developmental disabilities were sacrificed in pursuit of a public policy of permanent institutionalization. It was a policy that lasted until the exposures of the 1960s and 1970s and the rise of disability rights. The other two essays in this section, “Living in a World Apart” and “The Veil of Secrecy: A Legacy of Exploitation and Abuse,” present vivid examples of the inhuman conditions under which the residents were forced to live and work and the abuses to which they were so frequently subjected.

The five essays in the second section, “The Power of Advocacy”, describe how family and organizational advocates and, eventually, disabled self-advocates successfully challenged the residential model and secured the closure of Pennhurst and the movement of its residents to community living arrangements. Bill Baldini, in an oral history, recalls how his 1968 television series, “Suffer the Little Children,” produced for a Philadelphia station, shocked viewers who witnessed the appalling conditions at Pennhurst. Other essays detail the rise of family and organizational advocacy as family members and social organizations collaborated to speak on behalf of Pennhurst’s residents and to advocate for improved conditions and ultimately closure of the institution. Families were particularly important, beginning in the late 1940s and 1950s, in pushing for improvements and in creating vehicles such as the Association for Retarded Children to advocate for change. The all-volunteer Pennsylvania Association for Retarded and Handicapped Children, later known as PARC, became an effective advocacy and lobbying group on behalf of the residents of Pennhurst and other other state institutions. Tying into the emerging disability rights movement in the 1960s, PARC eventually moved from advocacy to legal actions to force changes in how their children were treated.

Judith Gran, in “From PARC to Pennhurst: The Legal Argument for Equality,” examines the significant legal cases emerging from PARC’s advocacy that articulated and embodied the development of the rights of the men, women, and children confined in places like Pennhurst. The 1972 consent decree in PARC v. Commonwealth took the position that “de jure exclusion of children with intellectual disabilities from public school violated the Equal Protection Clause” of the Constitution (p. 107). This established the right to education and would lead in 1975 to the congressional passage of the Education of all Handicapped Children Act, later changed to the Individuals with Disabilities Education Act. In 1974, David Ferleger, an attorney in Philadelphia, filed Halderman v. Pennhurst “as an action seeking damages for the egregious harm and abuse experienced by Pennhurst residents, with PARC seeking community placement” (p. 117). In his decision, Judge Raymond J. Broderick ruled that the confinement of residents in Pennhurst violated the Equal Protection Clause of the Constitution and Section 504 of the Rehabilitation Act of 1973. He required Pennsylvania to move residents to the least restrictive community settings and his decision led to similar rulings in other states. 

The final two essays in this section reveal the positive consequences of deinstitutionalization. “The Rise of Self-Advocacy: A Personal Rembrance” tells the story of the creation of Speaking for Ourselves in 1982 and its subsequent history. Speaking for Ourselves was organized by former residents of Pennhurst with the assistance of disability advocates and soon became an effective forum to advocate for the rights of individuals with developmental disabilities. The essay focuses on former residents Jerome Iannuzzi Jr., Betty Potts, and Roland Johnson. James Conroy, in “The Pennhurst Longitudinal Study and Public Policy: How We Learned that People Were Better Off,” describes the long-term statistical study based at Temple University that, by regularly interviewing 1,154 former residents of Pennhurst, demonstrated that by every measure they were better off living in the community than they had been institutionalized. The study provided convincing evidence that Judge Broderick had been right in his decision in Halderman v. Pennhurst, not only on constitutional grounds, but on the direct benefits to those freed from lifetime confinement at Pennhurst. As Conroy points out, studies in other states replicated the Pennhurst results, and individuals with developmental disabilities benefited from living in the least restrictive community settings. 

The three essays in part 3, “A View to the Future,” take up the historical and material legacy of Pennhurst. They describe what happened to the physical plant when the state closed Pennhurst and largely abandoned it to the elements. They also raise the question of how what happened at Pennhurst and the emergence of disability rights in the struggle to close the institution should be remembered and memorialized. Once closed, parts of Pennhurst were repurposed as a nursing home for veterans and as a National Guard Armory. Other parts became a playground for urban explorers who wandered the empty halls in search of adventure, photographs, and sometimes artifacts and scrap metal. Parts of the buildings were eventually demolished and some that remain are transformed every Halloween into a commercially operated and very profitable haunted asylum. The haunted asylum is particularly problematic since it plays on outmoded stereotypes of the disabled and insane to scare the thousands who flock to the remains of Pennhurst to be safely frightened. Though a state historical marker was established on the site, and plans exist to turn the superintendent’s house into a museum, lack of funding and other obstacles have hindered the development of an effective and respectful historical memorial.

This volume provides a fine introduction to the history of Pennhurst and the disability rights movement that emerged out of the effort of disability advocates and eventually the former residents of the institution to assert their constitutional rights to live as freely as possible in the community. It is striking to see how in one state attitudes and policies toward men and women with developmental disabilities evolved in less than a century from seeing them as mortal threats to the reproductive health of the nation and deserving lifelong incarceration to recognizing their constitutional rights as individuals to determine how and where they would live under the least restrictive constraints. The essays also remind us how small groups of determined individuals aided by crucial judicial decisions can expand constitutional rights to populations once considered not fully human. Freeing the residents of Pennhurst took the strenuous efforts of parents, social scientists, lawyers, judges, physicians, politicians, and eventually the self-advocacy of former residents. While this book celebrates and remembers the success of freeing the residents of Pennhurst, we need to remember that the struggle to ensure the rights of the disabled does not end with this or any other particular success. The essays in this volume represent a good beginning in the historical recovery of the story of Pennhurst and its residents. For most of the essays, I felt that much more could be said on every topic addressed. I hope Pennhurst and the Struggle for Disability Rights spurs further scholarship, not only on Pennhurst but on other, similar institutions in the United States and other nations. Both the appalling conditions present in institutions like Pennhurst and the successes of advocates and residents in liberating those confined behind asylum walls need to be more widely studied and known.

Citation: Daniel J. Wilson. Review of Downey, Dennis B., Pennhurst and the Struggle for Disability Rights (Keystone Books). H-Disability, H-Net Reviews. March, 2021. URL: https://www.h-net.org/reviews/showrev.php?id=56111

Review of Edwards’ Deaf Players in major league baseball

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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

The Disability History Association’s Statement on Anti-Racism

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The murders of George Floyd, Ahmad Aubrey, and Breonna Taylor have sparked a firestorm of collective grief, anger, and protests against structural racism and the resulting systematic oppression and widespread violence. The Disability History Association (DHA) stands in solidarity with anti-racism activists and their fight for racial justice. We affirm that Black Lives Matter.

Our response to this moment demands a complex approach that is committed to both anti-ableist racial justice and anti-racist disability justice.

The rallying cry of the anti-racism movement, I can’t breathe—also the last words of too many Black people dying at the hands of police—emphasizes the ways Black disabled people’s health and well-being are disproportionately affected by white supremacy and social and environmental injustice. Chronic illnesses such as asthma, hypertension, and diabetes disproportionately affect Black communities. Systemic racism has created healthcare disparities through discriminatory diagnosis, institutional barriers, and lack of access. Structural segregation has also ensured that Black people are more likely to live in food deserts, areas without clean water or air, and high-poverty areas without access to green spaces. Moreover, Black adults often work in low-paying frontline jobs that expose them to greater occupational hazards and, thus, chronic illnesses or disabilities. Black disabled people also encounter law enforcement officials—including for welfare checks or during a mental health crisis—at disproportionately higher rates.

According to the National Disability Institute, fourteen percent of working-age Black people have a disability compared to Non-Hispanic Whites (11 percent) and Latinxs (8 percent). Furthermore, because both disability and race are determinants of socioeconomic inequality, Black disabled people remain one of the most vulnerable groups. Having a disability is costly, and ableism itself can severely limit disabled people’s economic opportunities. In the United States, to obtain disability benefits and health coverage, an individual has to prove they are incapable of work; at the same time, welfare programs require applicants to be employed, forcing disabled people to make difficult financial choices. These material realities can further exacerbate chronic conditions and delay/restrict necessary treatment and support. We have seen, time and again, the tragic results of these intersections.

The DHA recognizes the entanglement of racism and ableism, and that a multiplicity of historical processes created these conditions. We are aware of the ways that Black communities and Black disabled people have been targeted by the violent, racist, and ableist systems of white supremacy, in both the past and in the present. The legacies of U.S. racial chattel slavery remained entrenched in local policies, state laws, and federal legal decisions. They remained entrenched, as well, in the U.S. Constitution. Merged with eugenics, which gained remarkable popularity between the American Civil War and World War II, these oppressive forces have systematically targeted Black disabled people for institutionalization, immobilization, and violent interventions. Cases like those of Junius Wilson, a deaf man incarcerated in the Jim Crow South for a crime he did not commit, were not uncommon. After the Second World War, eugenics persisted in old and new forms. Eugenic philosophies and practices permeated debates about genetic counseling, public education, and the provision of healthcare, perpetuating the constitutive claim that white, able-bodied people were superior to Black and Black disabled people.

The impacts of these racist and ableist projects persist into our current moment. As a lethal and disabling pandemic grips the world, disability and Black communities across the United States have been disproportionately impacted by COVID-19. The deadly combination of systemic racial injustices, spatial and economic discrimination, lack of equitable access to healthcare, and institutionalized ableism have proven especially dangerous for Black and disabled people. Not only are Black people more likely to be hospitalized for COVID-19, they are much more likely to die from COVID-19 than any other group. In New York, for instance, the COVID-19 death rate for Black populations was as high as 92.3 per 100,000 population, which is substantially higher than death rates for Hispanic/Latinx (74.3/100,000), white (45.2) or Asian (34.5) populations. Meanwhile, disabled people—Black and otherwise—have faced shortages of life-sustaining medications, been targeted for abandonment through resource scarcity protocols, and had do-no-resuscitate orders (DNRs) issued without their consent. There is also growing evidence that people who survive coronavirus may also have long-term disabilities, which are also likely to have disproportionate impacts on the Black community.

Despite these historically consequential connections between racism and ableism, Black disabled people’s stories have been erased from the annals of history. As activist Vilissa Thompson has asserted, without Black disability history, the political and societal developments that many of us take for granted might not have occurred. We need to spotlight histories of prominent Black disabled figures — such as Harriet Tubman, Fannie Lou Hamer, and Mary Church Terrell — and also acknowledge the roles many Black disabled people have occupied in the pursuit of justice. Members of the Black Panther Party not only aided disabled activists during the 504 sit-in protests, but also created networks of healthcare centers and food programs to address the disabling effects of medical and educational racism. Black and Latinx activists contributed significantly to twentieth-century efforts toward deinstitutionalization. And Black, disabled activists have been at the frontlines of American Disabled for Attendant Programs Today (ADAPT).

The DHA promotes the study of disabilities throughout history. We are committed to advancing Black membership and leadership within the DHA, and to cultivating partnerships with Black institutions and organizations. Our mission is to foster various perspectives, representations, and policies on disability, including the ways that disability and race are intertwined. We commit ourselves to anti-racism and the dismantling of white supremacy by:

  1. Critically reflecting on the DHA’s practices in order to identify the ways in which it participates or is complicit in the racist and ableist structures of higher education. This includes an examination of how we can dismantle implicit bias and systemic oppression in practices and uphold the DHA’s mission and anti-racist, anti-ableist stance. 
  2. Supporting, promoting, and amplifying historical work by Black and Black disabled people. We also strive to promote the documentation and dissemination of information about the history of Black disabled experiences, the intersection of racism and ableism, and Black disabled activism and resistance. We will continue to use our social media to elevate Black creators’ hashtag campaigns, including #BlackDisabilityHistory and #BlackDisabledLivesMatter.
  3. Supporting, promoting, and amplifying research into the historical intersections of race and disability, as well as the intersections between past and present experiences of being Black and disabled. We will continue to use our blog, All of Us, to encourage conversations about the connections between past and present Black disabled histories.
  4. Seeking diverse leadership, membership, and partnership in our organization. We commit to actively striving to recruit BIPOC historians of disability to join the DHA and to positions of leadership within the DHA. We also commit to inviting BIPOC historians to be interviewed for our podcast series, submit articles to our blog, and apply for our awards.

Readings on Disability & Race

Christopher M. Bell (ed.), Blackness and Disability: Critical Examinations and Cultural Interventions. East Lansing: Michigan State University Press, 2011.

Liat Ben-Moshe and Sandy Magaña, “An Introduction to Race, Gender, and Disability: Intersectionality, Disability Studies, and Families of Color,” Women, Gender, and Families of Color 2.2. (Fall 2014): 105-114.

Susan Burch and Hannah Joyner, Unspeakable: The Story of Junius Wilson. Chapel Hill: University of North Carolina Press, 2007.

Chris Chapman, Allison C. Carey, and Liat Ben-Moshe, eds., Disability Incarcerated: Imprisonment and Disability in the United States and Canada. New York: Palgrave, 2014.

Arida Imada, “A Decolonial Disability Studies?” Disability Studies Quarterly 37.3 (August 2017).

Angel L. Miles, Akemi Nishida, Anjali J. Frober-Pratt, “An Open Letter to White Disability Studie and Ableist Institutions of Higher Education,” Disability Studies Quarterly 37.3 (August 2017).  

Therí A. Pickens, “Blue Blackness, Black Blueness: Making Sense of Blackness and Disability,” African American Review 50.2 (Summer 2017): 93-103.

Ellen Samuels, Fantasies of Identification: Disability, Gender, Race. New York: New York University Press, 2014.

Jorge Matos Valldejuli, “The Racialized History of Disability Activism from the “Willowbrooks of this World,” Activist History Review , Oct. 2019

Resources on Disability & Race

Museum of Disability History virtual exhibit on disability & the African American experience: https://www.museumofdisability.org/disability-and-the-african-american-experience/

“An Open Letter to the Disability Community on Why Black Lives Matter and Allyship”  letter to disability groups about Black Lives Matter

 ​”Ramp Your Voice!” “ an organization dedicated to issues of race and disability

Rooted in Rights, “Race and Disability”

Institutionalized Racism: A Syllabus

Crowdsourced Disability Studies Readings on the Intersections of Disability & Race

National Disability Institute, Financial Inequality: Disability, Race, and Poverty in America (2019).

Centers for Disease Control & Prevention, “COVID-19 in Racial and Ethnic Minority Groups” (2020).

Where to donate: https://www.nylon.com/life/black-people-with-disabilities-donations-resources

Review Brumby on Taylor

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by H-Net Reviews

Barbara Taylor. The Last Asylum: A Memoir of Madness in Our Times. Chicago: University of Chicago Press, 2015. 320 pp. $20.00 (paper), ISBN 978-0-226-27392-1.

Reviewed by Alice Brumby (York St John University) Published on H-Disability (November, 2019) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: http://www.h-net.org/reviews/showpdf.php?id=53723

Barbara Taylor’s The Last Asylum is a strikingly honest and personal portrayal of an episode of madness in the final days of the asylum era. The narrative focuses on the author’s personal lived experience, yet the work sheds light on the wider framework of mental health policy during the 1980s and 1990s in Britain. The work is not a “history” in the traditional sense; that is to say, it does not focus markedly on the themes or chronology that readers might expect of academic histories. Instead, the book offers a rare insight into a mind of madness, revealing an interpretation of one individual’s encounters with treatment regimes. In doing so, the book analyzes the achievements and failures of different treatments offered to one individual within the mixed economy of care in 1980s Britain.

Taylor’s work is written for a lay audience as well as for scholars. It offers an introductory account of the Victorian asylum system, which to many scholars will be familiar territory. Within her prologue, Taylor writes: “I am not a historian of psychiatry,” although elsewhere she shows a competent understanding of the historiography (p. xii).[1] For this reason, a historian of mental health may find nothing “new” in Taylor’s narrative. Yet to believe this would be to miss the point. While not a traditional academic history, the portrayal offers some thought-provoking insights of value to historians. Moreover, the book poses interesting questions about the representation and portrayal of mentally ill people as they fall under the historian’s gaze. By putting the service user firmly back into their own narrative of recovery, this approach corresponds with the analysis of Roy Porter, who long ago recognized the need to bring patients into the history of psychiatry.[2] Hearing the voice of the service user from the perspective of a recovered individual, while by no means unique, remains an extremely powerful literary trope that historians can use to full advantage.[3]

The labyrinth of community care services, the irregular nature of record keeping, and the difficulty of gaining access to surviving records often make it challenging for historians to create an accurate understanding of how these facilities worked in everyday practice.[4] Therefore, The Last Asylum is important as it not only offers a narrative of institutionalization in a mental hospital but also narrates Taylor’s experience of a range of other psychiatric facilities—including her hostel and day center facilities. There is much insight to be gained from Taylor’s narrative about the care she received and its importance in facilitating her recovery. Her analysis also has potential importance for today’s policymakers and mental health professionals.

Psychiatry and psychoanalysis run hand in hand throughout the text and Taylor describes them as being “a very effective working team” (p. xiii). Psychoanalysis and her relationship with V, her analyst, often takes center stage within the narrative, and extracts of conversations between the two are bravely recalled in earnest detail. Psychoanalysis is described as Taylor’s “main treatment of choice,” but she acknowledges that psychiatry and the asylum became her “stone mother” and her “safe place to be” when she most needed help (pp. 268-69). Nevertheless, her enthusiasm for psychoanalysis sets the text apart, and while much has been written about psychiatry, less has been written about psychoanalysis as a form of treatment in late twentieth-century Britain. Taylor herself describes how “psychanalysis gets a bad press these days, especially as a treatment for severe mental illness,” and she explains how she was often chastised and derided by many psychiatrists for her insistence on psychoanalytic treatment (p. xiii). Given the detail provided, Taylor’s explanation of these sessions and her deep belief that they helped her recovery provide interesting insights for the historian and lay reader alike. In the epilogue, the distance between psychoanalysis and psychiatry as two completely distinct bodies of healing and treatment begins to be reconciled. Taylor identifies what she considers to be the most effective treatment policies, where psychiatrists think “about the meaning of symptoms, instead of just trying to dose the symptoms away” (p. 264). She suggests that, for many patients, time, encouragement, support, and the feeling that they are being listened to make all the difference in their journeys to recovery.

An avid feminist with a keen interest in social justice, Taylor identifies some important relationships about class and gender. These insights have been instilled from her time spent inside and outside Friern Hospital and add to the narratives of historians who have attempted to research the intricacies of identities from the perspective of accessing, receiving, and even administering mental health care.[5] While many historians have identified the importance of social class in relation to mental health, Taylor’s work offers a direct insight into this relationship, stating: “poverty is a psychological catastrophe…. Living in Friern I saw first-hand how poverty plays hell with people’s minds” (p. 130). Nevertheless, despite this assertion, little is found out about the personal circumstances of other patients, and Taylor’s own educated middle-class identity makes this distinction ambivalent within the text. With regard to gender, however, Taylor confirms a well-voiced fact about the process of caregiving beyond the hospital walls. She identifies that “when politicians talk about ‘community care’ what they really mean is women: women inside and outside of families; women struggling, often with meagre resources, to look after loved ones” (p. 83). While this is a fairly uncontentious viewpoint, The Last Asylum showcases in great detail how this caregiving took place, the enormity of the task, and the mundane and extreme events with which Taylor’s friends had to deal during her illness. This personal story offers points for generalization and understanding in a way that is difficult to access and interpret in formal mental health primary sources.

The book’s epilogue is important for a variety of reasons and is crucial in reinforcing Taylor’s argument. Indeed, the epilogue takes a more scholarly approach than the rest of the narrative. It is well researched. Taylor used a collection of research papers, historical documents, and social policy information, and conducted a series of interviews with professionals, service users, and activists to offer an assessment of modern-day practice. This research is then used to highlight the difference between the psychiatric services during her illness and what they are like today. The resulting picture is honest but occasionally bleak. Explaining the need for more money to be invested into the “Cinderella Service” that is psychiatry, Taylor emphasizes the importance in understanding patients’ histories to achieve a proper diagnosis, rather than just the administration of drugs (p. 256). One interview with a psychiatrist identified that individual patient histories have been lost in a system concerned only with fixing symptoms. She claims that, at the time of being interviewed, “individual patients have vanished” behind their symptoms (p. 268). If we accept this conclusion that an individual’s experiences have become less important, then Taylor’s individual story of survival becomes even more important, showcasing that uncovering personal histories can be the route to real recovery.

Taylor’s conclusion from both her research and her personal experience is one echoed by many post-revisionist historians: it is too simplistic to merely look at the old asylum system as merely good or bad. These binary oppositions are not a useful tool of analysis if we want to assess the impact of this regime holistically. There is ample evidence to suggest that the mental health system of the asylum heyday was chaotic and deeply flawed, and there is no doubt that unforgiveable abuses occurred in many institutions. Those who were commissioned to manage asylums and, later, mental hospitals had an impossible task, especially when faced with the numbers of institutions and patients involved. Nevertheless, it must be acknowledged that among stories of misery, there were often many grounds for optimism. As in Taylor’s narrative of her time in Friern, some patients recovered and returned home cured. Patients have recounted extremely happy memories of their time in institutions and have identified friendships, which were built as part of their incarceration, both with other patients and occasionally with staff. Clearly a range of factors influences an individual patient’s experience, including their specific illnesses, the institution they are sent to, the peculiarities of the staff and patients who live and work alongside them, and the level of support and care they continue to  receive from their families and friends in the outside world. Taylor finishes her analysis by asking an important question: what now happens to those who need the support of the institution in a nation invested in community care? This is increasingly asked as more and more information comes to light about some of the weaknesses of community care provision, and it is a very important question, and one that Taylor adequately uses to try and highlight some of the shortfalls in the current system of care.

Notes

[1]. Barbara Taylor, “Demise of the Asylum in Late Twentieth Century Britain: A Personal History,” Transactions of the Royal Historical Society 21 (2011): 193-215.

[2]. Roy Porter, “The Patient’s View: Doing Medical History from Below,” Theory and Society 14, no. 2 (1985): 175-98.

[3]. For more on this, see “Testimony: Inside Stories of Mental Health Care,” 1DVDR0000733, British Library Sound Archive, London.

[4]. Peter Bartlett and David Wright, “Community Care and Its Antecedents,” in Outside the Walls of the Asylum: The History of Care in the Community 1750-2000, ed. Peter Bartlett and David Wright (London: The Athlone Press, 1999), 1-18.

[5]. For an interesting selection of work on these topics, see Jonathan Andrews and Anne Digby, eds., Sex and Seclusion, Class and Custody: Perspectives on Class and Culture in the History of British and Irish Psychiatry (Amsterdam: Rodopi, 2004).

Citation: Alice Brumby. Review of Taylor, Barbara, The Last Asylum: A Memoir of Madness in Our Times. H-Disability, H-Net Reviews. November, 2019. URL: http://www.h-net.org/reviews/showrev.php?id=53723

REVIEW: Atherton on Fulk and Allen, ‘An Invincible Spirit: The Story of Don Fulk’

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Don Fulk, Janet Allen. An Invincible Spirit: The Story of Don Fulk. Washington, DC: Gallaudet University Press, 2019. 154 pp. $27.95 (paper), ISBN 978-1-944838-47-8.

Reviewed by Martin Atherton (University of Central Lancashire) Published on H-Disability (September, 2019) Commissioned by Iain C. Hutchison (University of Glasgow)

Printable Version: http://www.h-net.org/reviews/showpdf.php?id=54317

Don Fulk was an American disability rights campaigner who was deafened by spinal meningitis at age three and later paralyzed in an accident when he was eighteen, which left him a quadriplegic wheelchair user. Despite these challenges, he went on to find employment, marriage, and independence. This book details events in his life, told in the first person but written by his friend and colleague Janet Allen and published twenty years after his death in 1998. Allen based the book on stories and recollections related to her by Fulk in American Sign Language over the course of their friendship and subsequently translated into written English. This makes Allen’s account both a unique testament and a difficult book to classify. Although written in the first person, this cannot really be considered an autobiography as it was essentially ghost written long after his death and the label of biography does not fit easily either because of the use of the first-person voice throughout. There is also very little detail about Fulk’s family background beyond the names of some of his siblings, and we are told nothing about his parents or their role in his upbringing. The methodology in producing the text is also problematic as the process of recalling and translating Fulk’s history is not identified. Allen does not indicate if she kept records of their conversations or relied solely on memory, and it would be useful to know this. As there is no direct transliteration from signed language into spoken or written language, there is always an element of trust between signer and speaker/writer that the message being conveyed is an accurate one. While it is not the intention to cast any aspersions on Allen’s efforts, it has to be acknowledged that Fulk did not have the opportunity to check and amend any of the thoughts and experiences ascribed to him. This places an even greater responsibility on the ghost writer; the overall story might be weakened as a result, as will be discussed later.

Despite these reservations, the book does offer some illuminating insights into the issues faced by both deaf sign language users and people with physical limitations that leave them reliant on others for their most basic life needs. In common with many other deaf people, communication with the hearing world was severely restricted for Fulk. In the book, he recounts that he had virtually no dialogue with his family and he did not go to school until he was ten years old. It was only on the morning of his first day at school that he claims to have learned his first word, when his father wrote his name on a piece of paper. This instance is an example of the issues that can arise from the distinctive methodology used to produce the book; it seems likely Fulk meant that this was the first written word he learned, but as his comment has been reported verbatim, we cannot be sure and it was not possible for his amanuensis to be checked given he had died many years earlier. Entering school finally gave Fulk a sense of belonging and access to meaningful interaction with a peer group, but this was to be cut short following a swimming accident. Fulk broke his neck when diving and he spent the rest of his life confined to a wheelchair, reliant on others to clothe, feed, and clean him. He learned to sign in a rudimentary form using the restricted movement in his arms and to write notes using a pen held in his mouth. He experienced physical and emotional abuse in institutional care homes, and this eventually led him, through encounters with disability activists, to become an advocate for disability rights in America.

The book is not all doom and gloom. There are several humorous and incredible stories. Fulk was eventually provided with a motorized wheelchair, which aided his bid for independence. On one occasion, he and his girlfriend decided to go to a cinema, which involved an eighteen-mile round trip lasting sixteen hours in extreme heat, during which they begged drinks from houses they passed. Other journeys involved hitching lifts with strangers when batteries died and memorably getting a wheel jammed in a railway track with no one around to rescue him. Fortunately, a passing motorist arrived before a train approached and tragedy was averted. Fulk also illustrates how he found love and married, although this too was not a smooth transition and resulted in periods of separation that created further dependency issues in terms of his care and welfare. Fulk never complained and clearly took great pride in the achievements he and others had in improving life for disabled people in Arizona and beyond.

Throughout the book, these events are recalled in a matter-of-fact manner and the impact often has to be assessed by the reader. Indeed, such is the tone of the text that details such as those about his age when seeing his name for the first time could easily be missed by a casual reader. Several interesting issues are raised throughout the book but never fully explored, and this is the book’s inherent weakness. By merely retelling details of his life in a larger chronological manner, there is little contextualization of the events and there is no discussion of why or how these issues arose or how they affected those involved, beyond the purely factual. It is understandable why this style might have been adopted, perhaps as a means of keeping true to Fulk’s memory and experiences, but the narrative is patchy and incomplete as a consequence. A better approach might have been for Allen to have written a more traditional biography of Fulk, using his stories and her own memories as inspiration and illustration. This would have given much more relevance to his life story and allowed Allen to tell us more about his achievements and legacies. The postscript hints that these were extensive and far reaching, but the book never fully explores these either. Producing this book was clearly a labor of love for Allen, but a more detached and objective telling of Fulk’s story would have created a clearer understanding of the man and his life.

Citation: Martin Atherton. Review of Fulk, Don; Allen, Janet, An Invincible Spirit: The Story of Don Fulk. H-Disability, H-Net Reviews. September, 2019. URL: http://www.h-net.org/reviews/showrev.php?id=54317