Paul Longmore was an innovative scholar of history and disability as well as a disability rights activist. He died in 2010, leaving behind a rich but incomplete manuscript that he had worked on for years. A group of people, headed by historian and disability studies scholar Catherine Kudlick brought the manuscript to publishable condition. The book includes a prefatory editor's note by Kudlick and a concluding afterword by Carol Gill, a disability studies scholar and psychologist. Both speak to the respect and admiration many people had for Longmore, as activist, teacher, mentor, and scholar, as well as reflecting on Longmore's ideas. The story of the book's completion alone is compelling, and I hope the people involved in the process write more about it - how does one go about doing the work of taking another's manuscript and work further on it while seeking to be faithful to the other person's vision and voice? The editors of Longmore's manuscript also expressed commitment to the importance of the work itself, and that work is remarkable.
When I was a kid I always changed the channel when telethons were on television, because they went on for what felt like tedious length. Longmore's Telethons shows how charity telethons are in fact fascinating. Longmore shows how telethons were much more complex activities than cursory attention would suggest. Further, telethons were one of the arenas that taught many nondisabled Americans and some disabled ones to depict disabled people in cursory fashion, reducing them to caricatured exemplars of their disability status. Longmore's real critical focus, however, is not directed at television programs. His real target is the whole world implicated here, the entire social universe that produced the telethon as phenomenon. As such his exposition shifts back and forth between telethons as object of analysis, explained through a grasp of social structure and longer history, and telethons as avenue into opening up larger social processes to critical attention; Longmore does this in a way always grounded in specific examples of how those social processes play out in individual people's lives.
In his introduction Longmore calls for "a disabled perspective" (xvii) to be practiced as a critical social theory, one that seeks to explain disability and also takes disability and experiences of disability as an analytical and moral perspective through which to understand a wide swath of our society. As the final chapters and conclusion make clear, this critical social theory should be informed by and seek to inform an activist sensibility, seeking to identify and eliminate the sources of social injustice. And yet, the book is not generally written in an idiom that I associate with the term theory. That's a compliment. Theory as a genre sometimes displays its intelligence in its complex vocabulary and sentence structure. Longmore's book wears its intelligence in its incisive commentary and concepts. Students and scholars could learn a lot from this book, including how to write about complex ideas in clear, readable prose. The book manages to do all this in thirteen tightly written chapters, plus introduction and conclusion, totaling only about two hundred thirty pages of body prose (and, to be fair, over eighty pages of endnotes.)
While concise, the book takes no shortcuts, being heavily or even exhaustively evidenced. Two examples of Longmore's assiduousness as a researcher: he includes a nearly two page endnote (286, note 1) listing different adaptations of Dickens's A Christmas Carol, as part of making a point about the presence of the character Tiny Tim as a metaphor through which disabled people were depicted within dominant culture; he also watched nearly endless hours of telethon footage, counting the number of disabled hosts, presenters, and volunteers who appeared on screen from 1988 to 1995 (308, note 2).
The book begins with an introduction that surveys the book's over all arguments and the concepts of the medical and social model of disability. Here Longmore writes of his own life and experiences, situating himself in relation to the book's themes. The first chapter provides an overview of the rise of telethons in the mid-twentieth century. The second chapter places the telethons in the context of the U.S. public-and-private healthcare and welfare system, a system Longmore criticizes for negative effects on people with disabilities. He notes that telethons were an artifact of that system, filling institutional gaps into which disabled people fell, an imperfect artifact that could not handle all of the systemic shortcomings, and further notes that telethons provided ideological cover for that system. Telethons depicted disability as an unfortunate medical problem to be solved by voluntary contributions, rather than as an unjust social condition to be remedied by political action. That depiction was both symptomatic of and reinforced by larger cultural understandings of disability and policy.
The third and fourth chapters highlight the money made by telethons, especially money made by large corporate donors. Companies got very effective marketing for quite cheap through their telethon donations. Longmore notes that those donations often cost companies nothing at all, as they funded them through consumer promotions or employee contributions, yet donor companies depicted themselves as generous, socially conscious, and warm. This served companies well at a time of growing skepticism about big corporations on the part of the American public.
In addition to disability history, of course, the early chapters could be largely considered business history, with a focus on institutions, both including individual firms and industries, as well as policy and larger economic trends. The earlier chapters especially show the ways in which American economic and political institutions largely failed disabled people. Telethons covered over that failure, dealing with only a fraction of the needs the American health and welfare system left unmet, and let private companies make money from this arrangement in the process. With chapter five the book shifts more toward cultural history, bringing to bear a closer reading of telethons as texts. In my view, this combination of investigating institutions and political economy with cultural studies is exactly how scholars should study economic life.
In chapter five, Longmore argues that telethons formed a kind of public ritual serving "to effect the spiritual redemption, moral restoration, and social elevation" of nondisabled Americans. (59.) Telethons portrayed an image of America as a moral community wherein the hierarchies of nondisabled people over disabled people were natural and frictionless. While the telethons were ostensibly for the benefit of disabled people, Longmore argues, in reality telethons made use of people with disabilities as symbols and instruments. This occurred against a backdrop of growing concern that America had become too impersonal and had suffered a loss of the civic virtues necessary for a good society. Telethons depicted the disabled as unequal outsiders around which nondisabled equal insiders could rally in order to restore a sense of common purpose and rightness. In the process, Longmore describes disabled people as "socially invalidated." (64.)
Discussion of social invalidation recurs across the book, with telethons as both rooted in a culture of disabled people's invalidation and as a particularly apt example of that invalidation. With the sixth chapter Longmore begins to increasingly ground his criticism of telethons in concepts derived from disability rights activists. He refers to telethons, borrowing from activists, as "dignity thieves." (83.) Social invalidation robs the invalidated of their human dignity. Longmore gives activists increasing attention in the later chapters of his book. The result is a succinct statement of disability as a category of analysis, and an excellent example of how social history or history from below can mesh with and contribute to critical social theory. In the seventh chapter Longmore dissects the emotional life of telethons, describing how nondisabled viewers (the people telethon makers considered to their audience) might enjoy the feeling of pitying the disabled, as well as—or because of—the feeling of "social distance" (10) created between the disabled and the nondisabled. Pitying together was a vehicle for the "moral and social redemption" (93) of those who together pitied the pitiful.
In chapter eight Longmore lays out a dichotomy of social positions available to the disabled within the rhetoric of telethons. People with disabilities could be invalids(pitiful and pathetic) or overcomers, honorary nondisabled people. Telethons essentially banked on pity for those depicted as invalids in order to call for funds which could be used to 'cure' disabilities or to fund individual acts of overcoming. Overcoming was only ever partial, however, as to be a disabled person was to be, at most, only provisionally a member of the American moral community, and it came at the cost of renouncing a significant portion of one's body and one's self. In chapter nine Longmore argues that this rhetoric drew upon and contributed to larger notions of bodily mastery, and networks of "body experts" (123) including physicians and rehabilitators. Again Longmore slowly increase his attention to disabled activists and uses their perspectives to ground his criticisms of telethons and larger patterns in American society.
The body helps Longmore segue to gender and sexuality in relation to disability, the topic of chapter ten. Here too the disabled served as icons in telethon rituals aimed at the nondisabled. Acting as would-be saviors to disabled people presented as helpless allowed telethon hosts and performers to play out patriarchal gender roles, shoring up those roles at a time when they were under siege from the women's and GLBT movements and changes in employment patterns. As with the book over all, Longmore emphasizes both cultural norms as well as institutions and policy, such as welfare rules that forced disabled people to choose between government support for necessary items like ventilators and personal assistants, and getting married or having a job. As Longmore puts it, "work and marriage disincentives flew in the face of a vaunted commitment to 'family values.'" (147.) These policies were informed by assumptions in the dominant culture that people with disabilities could not be normative men and women. Policy gave those assumptions serious financial teeth. That in turn helped make normative gender roles into another way that telethons could depict people with disabilities as falling short of the norm. Longmore also points out that people with disabilities were routinely presumed to be heterosexual, albeit incapable of being full persons who were heterosexual. These norms and assumptions no doubt harmed people with disabilities, but Longmore emphasizes that people with disabilities fought successfully to create lives of dignity and flourishing.
Gender ideologies can seem abstract but Longmore underscores how concrete and personal they were. He describes scenes in telethons where nondisabled parents spoke to hosts of how having a disabled child was both heartbreaking, because the child supposedly had no future that was meaningful or worthwhile, and was a tremendous burden. In these scenes, the children themselves sat silently nearby. This is obviously appalling. Longmore elegantly handles this material, largely letting it speak for itself with minimal editorializing, following the old adage about showing vs. telling in writing. What he shows in doing so is some of the ways in which gender and family and disability ideologies all manifested themselves directly in the lives of people with disabilities. Disabled people's social invalidation sometimes extended into their relationships with their immediate loved ones, who may have loved them fully but did not fully respect them. Here too the disabled served as stage settings in a ritual by and for the nondisabled: "honor your own children who aren't disabled," one telethon host urged viewers while standing in front of a young disabled man. (182) Depicting the disabled as, in effect, bad luck, allowed nondisabled Americans to feel lucky.
In the book's final chapter, disability rights activists, having been at the edges of the story multiple times, take center stage. Longmore highlights national protests against telethons, showing their roots in a longer history of disabled people's activism. In a particularly well-done section he juxtaposes condescending remarks by telethon host Jerry Lewis with disability rights activists' robust demands for dignity. The pairing works well, underlining the ways in which telethons treated people with disabilities as two-dimensional objects, while activists asserted their three dimensional humanity and autonomy. If the book has heroes, they are the disability rights activists. Here the book shifts yet again to the social history, the history from below of activists. Longmore draws out the insights and alternative world views those activists created, but the book is not a straightforward celebration of those activists.
In the conclusion Longmore points out ways in which activists failed to articulate a comprehensive criticism of disabled people's unjust treatment in the United States. In doing so he subtly indicates that if the book has a villain it is not individual persons so much as it is social patterns and prevailing ideologies. Longmore recognizes that some good came of telethons in terms of funding, while arguing above all that serious institutional transformations are necessary, especially universal healthcare and a more robust welfare state, for disabled people's human dignity to be properly recognized by our society. In the book's concluding paragraph he calls for disability rights activists and disability scholars to further refine the critical social theory of disability and expand further upon the category of disability as critical social theory.
Longmore's book is powerful and persuasive. It's also a great pleasure to read, in the way that watching a master thinker is pleasurable. He thinks with material in impressive ways that seem effortless. He uses the Dickens character Tiny Tim to think about disability, then turns the Tiny Tim character in an object of analysis by looking at how the character recurred in different versions of the Dickens story and in imagery about disability. This is what he does as well with telethons, making them sometimes object and sometimes interpretive device. I wish I knew a term for the writerly shift Longmore carries out here, whereby a single object, practice, or character is first analyzed then used to introduce a world of social phenomena and theoretical armature. Whatever it's called, when Longmore does it the shift is always elegant and subtly accomplished. Other material Longmore draws upon to think includes Adam Smith, Alexis de Tocqueville, contemporary sociologists and psychologists, a host of historians, disability rights activists, and the biblical Jesus.
I will conclude by mentioning two areas underdeveloped in the book: race, and capitalism. Race is largely absent from the book. This is a problem. I hope further work combines Longmore's analysis in this book with attention to race as a category to the experiences of racialized minorities who are also people with disability. I would like to see this building occur in two directions, one more narrowly expanding on the analysis of telethons and the other more broadly expanding on the analysis of the many social processes both constituted by and constitutive of disability.
Finally, capitalism. Longmore doesn't really define what he means by capitalism, which in turn limits the degree to which his book could enrich our understanding of capitalism and of the connections between capitalism and disability. As with race, this is an area where I hope readers will build on Longmore's book. One such area I am personally especially interested in is the moral meaning of money. That theme appears throughout the book, but only implicitly. Money can be seen as simply a neutral instrument through which people access goods and services. As Longmore notes, some of the time corporate donors to telethons were primarily interested in money in this sense: charitable giving was a good marketing strategy. Money is also a symbol, however. A donation to the disabled, as Longmore repeatedly notes, was a kind of performative action through which donor became or displayed themselves as morally worthy. There is further work that could be done to discuss the relationship between money, morality, and disability. This investigation could focus on the sorts of moral rituals of money that Longmore showed took place in telethons. This investigation could also focus on the relationship between the depoliticization of disability (through the medical model and the obfuscation of policy and power) and the depoliticization of the economy as private in both the sense of subject to minimal government oversight and in the sense of relatively sheltered from collective moral judgments.
Scholars with other interests would no doubt see much else in Longmore's book related to their interests, as there is a great deal in this fine book. We should all be grateful that Longmore wrote Telethons and that his colleagues did the work to make sure we could read it.