Paul K. Longmore. Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press, 2003. ix + 278 pp. $69.50 (cloth), ISBN 978-1-59213-024-5.

Reviewed by John Vickrey Van Cleve (Department of History, Gallaudet University)
Published on H-Disability (October, 2003)

Paul Longmore: A Life Worth Living

Paul Longmore: A Life Worth Living

Over the course of an academic career, it's fairly common to publish a book or two, write an occasional article for specialized journals, and teach classes in a narrowly circumscribed field. These milestones are not generally difficult to achieve, but their significance is elusive. Few of us publish work that creates new paradigms or that leads to changes in public or private behavior. Perhaps our students reconsidered long-held beliefs or discovered new ways of interpreting their world, but in most cases we do not know. Looking back on three pleasurable decades in academia, therefore, I wonder whether my career has had an impact, whether it has meaning beyond personal gratification. Paul Longmore need not confront this painful question: in fewer than twenty years as a university historian, he has altered the practices of his chosen profession, and he has affected attitudes and institutional behavior nationwide.

Longmore wrote a well-reviewed traditional history, The Invention of George Washington, that has been in print for fifteen years or so--no mean accomplishment--but he's also been a public activist who has written profoundly about policy questions facing American society, such as assisted suicide, eugenics, and euthanasia. Why I Burned My Book and Other Essays on Disability is a collection of some of his best writing on both history and policy. The combination of scholarship and activism displayed in this book is exciting. It's also unusual, for the academy generally punishes historians who openly espouse political positions, insisting that their "neutrality" or "objectivity" will be compromised by ahistorical and presentist perspectives. (This attitude may also be traceable to concerns about resource-granting entities that frown on criticism of dominant cultural constructs and power relationships.) Longmore himself apparently had misgivings about offending the academy or confusing his historian colleagues before he agreed to publish this collection. His series editor wrote in the foreword that Longmore "initially hesitated to assemble this volume because he was not sure that his writings as a scholar and activist could be understood together [...]" (p. viii).

They can, in fact, despite their diverse subject matter and different intended audiences. Two are exemplary historical essays, "The Life of Randolph Bourne and the Need for a History of Disabled People" and "Uncovering the Hidden History of Disabled People," that nudge historians toward studying and writing in new ways. Another, "The League of the Physically Handicapped," is scholarship that applies the tools of historical research and analysis to a new subject, demonstrating how disability history can and should be written. But Longmore also has included well-researched and carefully thought-out policy analyses, such as "The Resistance: The Disability Rights Movement and Assisted Suicide" and "Princeton and Pete Singer," as well as a film review, and even an autobiographical discussion, "Why I Burned my Book," that is a powerfully crafted indictment of American social assistance programs for disabled citizens.

Several common threads unite each piece of Longmore's work collected here. Most obvious is Longmore's scholarly diligence and tone. Every piece in Why I Burned My Book is based on wide reading, research, and reflection. Readers familiar with Longmore's first book--the one he burned (The Invention of George Washington)--will not be surprised, then, when they encounter analytically incisive passages such as the following from "The League of the Physically Handicapped":

"The discourses of disability in the politics of silicosis [a disease caused by inhaling silicon dust and characterized by loss of lung elasticity], as in the politics of home and work relief, alert us to the material interests and the political content underlying medicalized speech. If the league's attempt to politicize disability discourse fell short, it implicitly points to the importance of medical constructions of disability in class relations under modern capitalism" (p. 81).

Longmore's more popular work evidences the same careful thought of the above passage. Indeed, Longmore's reasoned thinking is evident on every page, even as he departs from the traditional scholarly medium and weaves together personal experience, anecdote, and traditional research. There is nothing light, frivolous, or extraneous in his measured tone and finely crafted arguments. What's most remarkable about this is that the world he describes in these essays, where bureaucrats often speak like characters from George Orwell and follow procedures straight from Kafka, is one designed to silence reason and to force its inhabitants to give up their self-respect, to say nothing of their intellectual pretensions.

Longmore's clarity is a second uniting feature. The quoted passage reflects the language that the essay's original publisher, the Journal of American History, typically demands, and within the small cadre of professional historians who read this journal, it is clear. More typical of Longmore's writing for broader audiences, however, are sentences like this, "Disability-related living and work expenses have posed the fundamental problem of my adult life" (p. 236). And, from the same article, "[Disabled Americans] are instructed that if we too adopt an indomitable spirit and a cheerful attitude, we can transcend our disabilities and fulfill our dreams. It is a lie. The truth is that the major obstacles we must overcome are pervasive social prejudice, systematic segregation, and institutionalized discrimination" (p. 231). Longmore's meaning is unambiguous, and his language is accessible.

Longmore writes persuasively, as well. For instance, in one essay he reframed the debate over Princeton University's hiring of notorious "euthanasia" advocate Peter Singer from a focus on quality of life and academic freedom to, in his words, "which voices and views are privileged in the academy and which are shut out?" (p. 225). In the article, Longmore asks questions that make the Singer controversy something different from what I had thought before: "Who on the Princeton faculty researches, writes, and teaches about the experience of disability from a minority group perspective?" "How many universities are seeking out scholars who do intellectual work that advances social justice for disabled people?" (p. 226). He also points out that Princeton did not, at the time it hired Singer, even attempt to meet the needs of disabled students, much less hire disabled faculty: "We are left to consider this disturbing fact: 'one of the richest universities in the country' could find funds to endow a chair for a man who advocates killing disabled people, but it can't come up with the money to accommodate disabled students" (p. 227). His conclusion is telling, clear, and precisely measured: "My point is not to call for Singer's ouster. Rather, I simply want to ask why his perspective is accorded, not just academic standing, but a highly privileged place, an endowed chair, while the perspectives of people with disabilities are granted no place at all" (p. 229). Not surprisingly, since this article appeared in 1999 Princeton has learned--perhaps from Longmore's convincing arguments--and begun to accommodate people with disabilities.

The most important common feature of Longmore's writing since The Invention of George Washington, however, is that it has sought to develop and refashion the fields of disability history and disability studies. The work that addresses the place of disability in historical writing most specifically is The New Disability History[1] edited by Longmore and Lauri Umansky, but several of the essays in Why I Burned My Book speak to it as well. Longmore sets the stage in his introduction, discussing briefly the now common idea (thanks in part to his work) that a medical model of disability is inadequate or worse. A model that emphasizes the cultural and political context of disability, that recognizes the centrality, in Longmore's words, of "a historical pattern of systemic prejudice and institutionalized discrimination against people with disabilities," should replace it (p. 1).

The distance we have come in recognizing the importance of a cultural model of disability, the success Longmore and several colleagues have had in changing attitudes, is displayed in his "The Life of Randolph Bourne and the Need for a History of Disabled People." Longmore writes that the problem with all Bourne biographies is a "fundamental misunderstanding of his experience and identity as a disabled man in a society that intensively stigmatized him" (p. 33). He drives home his point with a quotation from Christopher Lasch, an influential American historian of the late twentieth century. Lasch was considered sympathetic to progressive ideas and what were called "New Left" interpretations of the past. A generation of students read his The New Radicalism in America, 1889-1963: The Intellectual as a Social Type[2] and found it liberating. Lasch was no hide-bound conservative or defender of the privileged. At least contemporary historians did not think he was. How, then, does one explain the following Lasch quotation, "'It can be argued of course that all [his] disappointments and frustrations were the inevitable result of Bourne's deformity, and that they tell us nothing, therefore, about the society in which Bourne lived.'"? (p. 37). Bourne's "'disappoints and frustrations'" tell us "nothing" relevant to social history? Lasch suggests then that Bourne's disability was so transcendent and overwhelmingly defining by itself that it existed outside of time and place. Today, most historians would find such an assertion absurd. Yet in 1965 Lasch--and his readers--were ignorant, unversed in disability studies, unaware of what Longmore has since shown us. In the scant eighteen years since Longmore's critique appeared, the historical landscape has changed, and statements like Lasch's are nearly inconceivable.

Another measure of change in the historical profession can be gleaned from a recent essay in the American Historical Review.[3] There, Catherine Kudlick, a professor of history at the University of California, Davis, who contributed a wonderful piece, "The Outlook of The Problem and the Problem of the Outlook" to The New Disability History, examines fourteen books published from 1999 through 2002 that deal with disability in a historical context. She writes that they "represent a historical subfield with far-reaching implications for research and teaching that is just beginning to blossom" (p. 769). Like Longmore, Kudlick sees disability as a "social category, " and unlike Lasch, for example, she believes that "disability should sit squarely at the center of historical inquiry" and that it "will provide scholars with a new analytical tool for exploring power itself" (p. 765).

Longmore is not the only person responsible for the shift in historical attitudes that Kudlick's essay documents. There are many excellent scholars working in disability history today: in addition to Longmore and Kudlick themselves, Kim Nielsen, David Gerber, Martha Edwards, Douglas Baynton, Robert Buchanan, and Susan Burch, to name only a very few among many talented historians, have made important contributions. What sets Longmore apart is the centrality of activism to his life and work, and the effectiveness of what he has done. Longmore has lived the life of a disabled person, as well as the life of a scholar and activist, and those multiple roles intersected to lead him to burn his book, a story worth recounting.

The Invention of George Washington, a revised version of Longmore's dissertation, was due to be published by the University of California Press in 1988 when Longmore learned that its publication would cause him to lose benefits from the Supplemental Security Income (SSI) he received through the Social Security Administration (SSA). The publication of a first book by a respected university press is usually an occasion for joy, a mark of success, of "having arrived" in the world of academia. Not so for Longmore, for SSA rules forbid the receipt of "unearned income," which, astoundingly, is the way that SSA then classified book royalties. SSA also classifies scholarships and fellowships as unearned income, and therefore Longmore had to refuse a fellowship offer from the prestigious Huntington Library that would have allowed him to continue his work on George Washington. The loss of payments through SSI was not the major problem for Longmore, though. With a well-reviewed book in press, he had a good chance of university employment teaching and writing history, but qualifying for SSI made him eligible for medical insurance that paid for his home assistants and ventilators. Without home assistants and ventilators, Longmore could not work, could not be the productive member of society that he is. SSA, the American government, would punish Longmore for following the rules, for "overcoming" his disability and persevering through graduate school and through the research and writing of a book. One can almost imagine a bureaucrat thinking, "The effrontery, a disabled person with pretensions to high scholarship and a university professorship! We'll take away his assistants and ventilators and put him in an institution, out of sight, in his proper place."

Longmore, ever effective in his actions, did not allow himself such unproductive flights of fanciful anger. Rather, he organized a protest, a book burning, to demonstrate the absurdity of SSA rules. Like his writing, his protest reflected careful planning, meticulous choreography, to prove his point. He and a friend tested various methods to assure that the book would burn during the protest. They discovered that soaking it with lighter fluid and placing it on a barbeque grill above newspapers similarly prepared would create the desired immolation. Longmore telephoned his contacts in the disability rights community to seek their support and involvement. He phoned the media to alert them of the event, and he spent, he writes, "hours on the phone" with a Los Angeles Times reporter, attempting to explain government disability policies.

Longmore selected a visible, very public place for the book burning: outside the federal building in downtown Los Angeles. Television cameras and newspaper reporters observed as a wheelchair equipped van brought the implements to stage the fire, and protesters, many disabled, chanted and carried placards demanding an end to SSA's work and marriage penalties. In front of the cameras and media, Longmore first read a statement explaining his actions, then took a lighted match from a friend, turned, and ignited the lighter fluid-soaked newspapers under a copy of his book. In his words:

"I somberly watched the fire consume my book. I had planned the protest. I had rehearsed how to burn the book. I had even thought about what sort of expression I should have on my face. But I could never have prepared for the emotional effect on me of the act itself. I was burning my own book, a book I had spent ten years of my life laboring over, a book that had earned me my Ph.D. in history, a book I felt proud of and, in fact, loved. It was a moment of agony" (p. 253).

But it had an impact. Media nationwide picked up the story. The New York Times published a Longmore essay on work penalties. National Public Radio did a feature on a disabled man in Montana who lost his Medicaid when elected to the Montana state legislature. The SSA was embarrassed, and by early 1989 it looked as though Congress would significantly alter the laws governing Social Security programs. In the end, though, the direct gains were limited. Longmore and other disabled authors were allowed to classify royalties from books as "earned income," but disabled students and researchers still could not accept scholarships or fellowships, which remained classified as "unearned income," without endangering their SSA support.

Later legislation, specifically the Ticket to Work and Work Incentives Act of 1999 (TWWIA), made more progress toward removing work disincentives, as the power of the disability rights movement continued to grow, and as Longmore's strong and clear voice was heard. Incisive as always, Longmore writes about the TWWIA, "The act's greatest value lies, not in the specifics of its modest provisions, but in initiating a key ideological shift in disability policy: it permits the first small steps toward delinkage of medical insurance coverage from impoverishment" (p. 255).

I wish I had read this essay, indeed all of Longmore's collected works, two years ago, when disability policy and my personal life intersected. My only sibling acquired a disability in middle age. Unable to work regularly despite several academic degrees, she has fashioned an existence through a variety of programs, including Medi-Cal, SSI, and Section 8 (subsidized housing). Three or four years ago, however, the tiny house she rented with Section 8 assistance was sold in a divorce settlement, and she was forced to move. She had no money to pay for the move and asked me to lend her $2,000, which I did. She relocated, eventually paid me back somehow, and all seemed well, or at least tolerable. Then, about a year ago, she received a letter from SSA telling her that all her benefits, including the Medi-Cal and home assistance programs that had both kept her alive and able to live independently, were being terminated. As well, she owed the SSA several thousand dollars. What had she done? Well, SSA had reviewed her bank records and noticed, at the time she was preparing to move, that her total assets had exceeded the allowable amount of personal property she could possess, which I think was $2,000, for a period of two or three weeks. In other words, she was not sufficiently impoverished, albeit only for a short time.

My sister did not tell me all this directly, for she was too traumatized to speak of it. She merely sent me a copy of the letter from SSA and refused to answer my letters and emails suggesting a legal challenge, which I volunteered to pay for, saying that she couldn't talk about it and did not want me to call her. She was too upset. She would only state she that needed a letter from me verifying that the $2,000 was a loan that had been repaid. I didn't understand her attitude at the time. I was angry. I wanted to fight. A privileged white male, I'm used to demanding my rights and expected her, the older and more aggressive sibling, to do the same. Instead, she cringed, was consumed by fear. This disabled person was not the sister I had known for over 50 years.

I now understand, at least partially, what she went through, how the SSA bureaucracy uses irrationality, suspicion, and intimidation to try to keep disabled people frightened and dependent, caught in a social and political trap from which they can rarely escape and in which the slightest of errors can lead to loss of critical medical care and any remaining independence. Even Longmore, a success by every usual measure, a person who could be held up as an example to any aspiring scholar, cannot break free from the wretched mess of public policy. As he thinks about retirement, Longmore has discovered that both the state and federal governments consider pension benefits "unearned income." If he retires, he will have to use his pension payments to pay for his ventilators and home assistance, which will then leave him with no income to live on. As Longmore summarizes, at the end of Why I Burned My Book:

"For decades, the government warned us that if we got jobs it would take away assistance that made it possible for us to live independently and to work. Now the government is warning us that if we retire from our jobs it will take away that assistance. In other words, the old premises about people with disabilities remain in place. The old penalties that try to deter disabled people from productive work still threaten us. We still must fight policies that exclude or punish us" (p. 258).

As this fine book so eloquently demonstrates, Longmore has had an impact, but so much remains to be done. Historians still need to understand and interpret disability in ways that are meaningful to individuals without personal experience of it, and the disability community must focus on creating a united front among all who suffer from social, political, and economic marginalization, whatever the particular characteristic that marks them for such treatment, whether it's class, race, sexual preference, or disability. Without such a broadly-based coalition to oppose them, the swaggering little boys who run the Federal Government, and their allies in the business kleptocracy, will continue to brutalize those who make them uncomfortable.

I'd like to conclude by urging those who are new to their careers to be like Longmore and emulate his combination of scholarship and advocacy, but I am not certain that such advice is realistic. Longmore's skills and demeanor, his ability to stay focused on his message, no matter the circumstances, are most unusual, if not entirely unique. And he probably has paid a professional price. Perhaps he would be at Stanford rather than San Francisco State University if he had confined his work to historical scholarship and not been an engaged activist. That said, Longmore proves what can be accomplished by at least a few people. Why I Burned My Book is essential reading for everyone.

Notes:

[1]. Paul Longmore and Lauri Umansky, eds., The New Disability History (New York University Press, 2001).

[2]. Christopher Lasch, The New Radicalism in America, 1889-1963: The Intellectual as a Social Type (New York: Norton, 1965).

[3]. Catherine J. Kudlick, "Disability History: Why We Need Another 'Other'" American Historical Review V 108, 3 (June 2003) 763-93.

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Citation: John Vickrey Van Cleve. Review of Longmore, Paul K., Why I Burned My Book and Other Essays on Disability. H-Disability, H-Net Reviews. October, 2003.
URL: http://www.h-net.org/reviews/showrev.php?id=8268

Copyright © 2003 by H-Net, all rights reserved. H-Net permits the redistribution and reprinting of this work for nonprofit, educational purposes, with full and accurate attribution to the author, web location, date of publication, originating list, and H-Net: Humanities & Social Sciences Online. For any other proposed use, contact the Reviews editorial staff at hbooks@mail.h-net.org.