Fluent Essays

For this assignment, you will critique how disability is portrayed in a specific media. please focus on one thing such as a character or an event I would like to choose the fourth season(freak shows) of American horror story which is a TV show to make a critique sources https://www.youtube.com/watch?v=pYaCbMCPlzA&t=1985s Disability and the Media Fall 2021 Media & Disability Critique 100 points (2000-2500 words) DUE: October 14, midnight Much of society’s knowledge and understanding about disability is formed by what we read and watch (whether through news or entertainment outlets). This content is often taken for granted as truth and rarely critiqued. For this assignment, you will critique how disability is portrayed in a specific media. You may choose to critique a single portrayal in depth or may compare and contrast multiple portrayals (I suggest no more than two). The strongest papers tend to be the ones that focus on a single portrayal as it allows for more depth and critical analysis. You may focus on the format of your choice (film, television, theatre, literature, advertising, journalism, social media, gaming, etc). Genre is also of your choice (fiction, documentary, reality, horror, drama, comedy, etc.). You will be expected to include the following: · Introduction · Brief description/explanation of the disability portrayed (not medical definition but rather description of character(s) and their disability) within the context of the broader story. Note: you should write this for someone who may be unfamiliar with the character and/or story. · Primary thesis (with examples to further said thesis) · Assessment of stereotypes/tropes · How does this media portrayal help society understand and characterize disability? · How does this media portrayal impact and/or reflect people with disabilities (whether positively or negatively)? · Consider the portrayal of the topic in terms of accuracy, tone, bias, and cultural relevance. · Link back to theory. How does this portrayal relate to the theoretical models of disability? Please go beyond just listing the theory and be prepared to explain how this portrayal aligns more explicitly. This is worth 15 points! · Conclusion · Sources (combination of academic and non-academic sources). Minimum of 4 sources (course texts are allowed – please do NOT cite me!). Citations in APA style. Requirements: · Please submit via CANVAS. · I prefer papers single-spaced, left aligned, no indents, with paragraph breaks (spaces) between paragraphs, and headers/subheaders as appropriate. I’m looking for something written in an objective, 3rd person voice (not personal narrative). · The quality of your writing will be assessed. Consider making an appointment with WARC if you need assistance with essay structure, grammar, syntax, citations, or articulating your argument. APA Citation Example: Last name, first initial. (Date). Title. Source. Publication info. If website, retrieved from URL. · Doyle, A.C. (1892) The Adventures of Sherlock Holmes. London, England: George Newnes Ltd. · Schultz, G. and Aspe, P. (2017, December 31). The failed war on drugs. The New York Times. Retrieved from https://www.nytimes.com/2017/12/31/opinion/failed-war-on-drugs.html · Centers for Disease Control (2017, February 9). Contraception. Retrieved from https://www.cdc.gov/reproductivehealth/contraception/index.htm More detail: Purdue Online Writing Lab https://owl.english.purdue.edu/owl/resource/560/01/ Please note: Online sources such as easybib and noodle notoriously provide incorrect citations! They frequently do not include the publication source and/or organizational source. Grading Rubric: This provides a summary of how your paper will be evaluated: Your Score Comments Intro/Conclusion (10 points) The topic of the paper is clearly identified in the introduction Paper has a clear introduction and strong, compelling conclusion Background & Primary Thesis (15 points) Author has chosen a specific media portrayal and provided a brief description to provide context and background information. Author describes primary thesis of the portrayal and provides examples to support said thesis. Stereotypes of Disability (20 points) Author has assessed media portrayal as it relates to common stereotypes and tropes. Impact of Portrayal (20 points) Author describes how the portrayal impacts society’s understanding of disability. Author describes how the portrayal impacts individuals living with disability. Author describes the portrayal of the topic in terms of accuracy, tone, bias, and cultural relevance. Model of Disability (15 points) Author has described the media portrayal as it relates to models of disability. Author has demonstrated understanding of the model referenced. Sources (10 points) Author uses credible sources (minimum of 3) that are academic and non-academic. Author cites sources completely and accurately in APA format. Additional weblink included when possible. Formatting and Organization (10 points) ~3-4 pages, single spaced Standard margins and font Paper is free of grammatical and spelling errors Paper is well-written, easy to follow, and transitions from one idea to the next in a cogent manner. Paper is written in a 3rd person voice. TOTAL DISABILITY AND THE CIRCUS By Rachel Adams The bus runs on used cooking oil that has to be scavenged from restaurant dumpsters. It keeps breaking down, until finally it dies completely. There is garbage everywhere and arguments erupt over who should clean up. The giant tries to talk and people keep interrupting him. The Elephant Man has been left behind. The clown has lost his dog, who is also his best friend. The Human Tripod has a vicious hangover and spends all day lying on the couch. The giant gets fed up and catches a plane back to Oregon. Lobster Girl pulls a black hair from her chin and worries that she’s getting fat. These scenes from a film called The Last American Freak Show illustrate how far we’ve come from the romantic ideal of running away to join the circus. It is 2006, and the performers in The 999 Eyes of Endless Dream have missed the heyday of the freak show by about one hundred years (fig. 171). For six weeks, filmmaker Richard Butchins accompanied this traveling freak show as it drove from Oregon to Austin, stopping to perform at bars, nightclubs, parties, and a wedding along the way. His documentary The Last American Freak Show is a road narrative in the vein of Jack Kerouac’s On the Road or Ken Kesey’s The Electric Kool-Aid Acid Test in that it details the allure and the disillusionment of vehicular travel across the American continent. Like these precursors, it recognizes the road as a place where rebels and outcasts seek escape from the pressures of mainstream society. It appreciates the impulse toward nonconformity, while also recognizing the loneliness and discomfort that come with self-imposed marginality. What distinguishes Butchins’s story is that the majority of his travelers have significant congenital disabilities. They are “freaks” not only in their rejection of social norms but because of their deviance from bodily norms. As in Katherine Dunn’s 1986 road novel Geek Love, the performers in The 999 Eyes make a living by exhibiting themselves, flaunting their differences rather than attempting to hide or normalize them. But this isn’t fiction; it’s real life. Some use wheelchairs or prostheses, and some require consistent medical attention.1 The Last American Freak Show asks why people with disabilities would chose to exhibit themselves as freaks in post–Americans with Disabilities Act (ADA) America, and what it meant for Butchins—who is himself disabled—to undertake this journey. The Last American Freak Show was controversial. In 2008 it was banned from the BAFTA (British Academy of Film and Television Arts) Disability Arts Film Festival after the head of events declared that “the aesthetic of the film was wrong, that it was too explicit, raised too many questions and was too demanding for the event in question.”2 Butchins has never been able to find a distributor. And yet, the film has screened to considerable acclaim at festivals around the world, where it has received enthusiastic reviews. What makes The Last American Freak Show provocative is that, unlike other recent documentaries about contemporary circus life such as American Carny: True Tales from the Circus Sideshow (Nick Basile, 2008), Sideshow: Alive on the Inside (Lynne Doughtery, 2003)), or Sideshow: The New Sideshow (Tim Miller, 2003), this film bluntly tackles questions about the meaning of disability at the freak show. Given that people with disabilities were often cruelly exploited by circus managers and showmen, it questions what place people with disabilities might occupy within the modern circus and what their performances can tell us about being disabled in twenty-first century America. Disability and the Freak Show The circus has long been a gathering place for people with exceptional talents. It was P. T. Barnum who first realized the potential for combining the exhibition of human oddities with more traditional circus fare such as trained animals, clowns, acrobats, and dancers.3 Barnum got his start by as a showman by capitalizing on disability. He purchased an elderly black woman named Joice Heth, whom he advertised as the 161 year-old mammy of George Washington (fig. 172). Heth was not congenitally disabled, but her body was bent and twisted with age and decades of hard work. Under Barnum’s management, this unremarkable old woman became a sensation. When public interest in Heth waned, he rekindled it by spreading the rumor that she was not a living person, but an automaton. Barnum exhibited Heth until the day she died, when he garnered further publicity by arranging for a public autopsy to verify her age.4 Over the course of his career, Barnum was responsible for introducing some of the most famous human curiosities of his time: the conjoined twins Chang and Eng; the diminutive Tom Thumb; Lavinia Warren, and Commodore Nutt; William Henry Johnson, the “What Is It?”; the giants Anna Swan and Colonel Routh Goshen; Maximo and Bartola, the Aztec children; and Charles Tripp, the no-armed boy (fig. 173).5 These performers’ unusual bodies provided the raw material for the creation of freaks. Barnum’s genius lay in understanding how to use narrative and props to turn bodily impairment into a spectacle people would pay to see. He soon had many imitators, and the freak show became a regular feature of the American circus. Sometimes human oddities were incorporated into the circus ring, but more commonly they were part of a sideshow (fig. 174). Located in its own tent and requiring an extra fee for admission, the sideshow was among the most popular and profitable attractions at the circus. Freaks were defined by bodily features spectacular enough to make audiences want to stare, however the sideshow always contained an element of performance. Costumes, props, the showcasing of unique abilities and talents, and extensive advertising turned people with disabilities into freaks. Not every freak was dis- abled. Sideshows also included people with extremely long hair or nails, tattoos, and women in pants, as well as non-Western people, and those with unusual talents like sword swallowing, fire eating, and contorting. Sideshow acts could also be inspired by current events. “I am speaking of America—the land of real humor, of ingenuity, or resource,” reported journalist William Fitzgerald in 1897, “When some important political or other event agitates that great country, topical sideshows spring up with amazing promptness.”6 Thus, at various points in the nineteenth century, suffragettes, Philippinos, Native American chiefs, and Africans were exhibited as freaks. Born freaks—those with congenital disabilities—were the aristocrats of the sideshow world. The more unusual their bodies, the better chance they had to control their salaries and working conditions. Chang and Eng Bunker, the famous conjoined twins, set their own terms when they toured with P. T. Barnum. They made enough money to settle in North Carolina, where they married sisters and fathered twenty-one children.7 Few freaks were this fortunate. The conjoined twins Daisy and Violet Hilton never achieved the enduing success of their precursors. After a lonely and abusive childhood, they seemed poised to embark on a glamorous career as film and vaudeville stars (fig. 175). But they were exploited by managers and agents, who abandoned them once their public appeal declined. They ended their lives in obscurity, working at a grocery store and dying alone in their small apartment.8 Joseph Merrick, who was exhibited as The Elephant Man in the late nineteenth century, fared no better. After touring Europe, he was robbed and abandoned by his manager. So severe were his disabilities that it was dangerous for him to appear in public alone (fig. 176). He finally made his way to London, where he was rescued by Dr. Frederick Treves. He spent the rest of his life in Treves’s London hospital, where he died of asphyxia while sleeping.9 The life of Julia Pastrana, The Bearded and Hairy Lady, was also filled with hardship and betrayal (fig. 177). Her parents sold her to a showman who taught her to dance and play music, and eventually married her. She gave birth to a baby with features much like her own, who lived for only two days. Pastrana died soon after from complications of childbirth. But that was not the end of her career. After having both wife and baby mummified, Pastrana’s husband continued to exhibit them in a glass case.10 In the era before the welfare state, many people with severe disabilities turned to freak shows for economic support. Some parents sold children born with disabilities to showmen, having no other means to care for them. American cities passed “ugly laws” banning persons with “unsightly or disgusting” disabilities from appearing in public.11 These ordinances made the possibility of gainful employment, or even begging, more difficult. A souvenir carte-de-visite sold at a freak show makes the case for a man whose hands were disabled after being struck by lightning at age six: “He would gladly undertake any labor that would furnish him a livelihood, but how can he? Yielding, therefore, to the suggestions of friends he offers for sale his photograph, hoping that the small profit derived therefrom will contribute to his maintenance and support.”12 His plea represents exhibitionism as a form of work that allows a man who has no other means of income to earn a living. It allows spectators to conceive of staring as a charitable act. Any squeamishness they might feel about gawking can be assuaged by buying a photo. Freak shows could provide a livelihood for people with disabilities, but they were also a source of community, a place where their differences were accepted and even affirmed. While the show was on the road, the circus or carnival was a total environment where work and life ran seamlessly into one another. When not performing, circus folk were eating, sleeping, and spending their spare time together, creating a subculture insulated from the outside world with its own vocabulary, customs, and values. Onstage, freak shows exploited the continuity between life and performance by having people with disabilities perform everyday tasks: a person with no arms and legs lighting a cigarette; conjoined twins dancing, singing, and turning cartwheels; Lobster Boy tying knots. A familiar spectacle was the wedding of two unlikely performers, such as a midget and a giant or a fat lady and a human skeleton, who then could be advertised as “The World’s Strangest Couple.” Many of these weddings were simple publicity stunts, however, some disabled performers—such as Jeanie The Half-Girl and the giant Al Tomaini, and Percilla The Monkey Girl and Emmitt Bejano, The Aligator-Skinned Man—also found enduring love backstage at the sideshow, where unusual bodies were the norm (figs. 178, 179).13 Both of these couples met while touring with the freak show, eventually retiring and remaining together to the end of their lives. Those who did not find romance often appreciated the friendship and camaraderie of circus life. Beginning in the 1940s, many circus performers spent their winters in Gibsonton, Florida (aka Showtown USA), where the fire chief was a giant, the sheriff a dwarf, and unique zoning laws allowed them to keep elephants and carnival rides on their front lawns.14 With the rise of scientific understandings of disability, freak shows became less socially acceptable. Advances in medical knowledge and treatment made it possible to cure some conditions that once would have led to disabilities. Doctors began to provide scientific reasons for disabling conditions, framing them as pathology rather than sources of wonder. Increasingly, public sentiment turned away from the freak show, which had never been a completely respectable form of entertainment in the first place. It was no longer tolerable for people with disabilities to exhibit themselves for paying customers to gawk at. Rather, it was believed that they should receive treatment, and the incurable should be concealed from view in hospitals and institutions. In later decades, similar complaints would be leveled about the exploitation of trained animals.15 As a result, many of today’s circuses—such as Cirque du Soleil, Jim Rose Circus, the Bindlestiff Family Circus, Circus Smirkus, The Flying High Circus, and Circus Chimera—consist entirely of able-bodied performers, featuring no animals or people with disabilities. Although changing times sent freak shows into decline, they never disappeared entirely.16 Instead, they moved to the social margins, where they continued to court less prosperous and respectable clientele. By the mid-twentieth century, freak shows were no longer part of the circus, surviving instead at county fairs, traveling carnivals, and New York’s Times Square and Coney Island. However, in the last twenty years live freak shows have seen something of a revival among young hipsters and bohemians, who have brought them back under the aegis of circus performance. In Freaks and Fire, J. Dee Hill claims that the contemporary circus functions along the lines of a tribe, attracting the same populations as alternative cultural gatherings like the Burning Man festival and Rainbow Family.17 Participants tend to be young and white, with backgrounds in dance, theater, music, and fine arts. Whereas once the families of circus folk passed their acts from one generation to the next, few participants in the contemporary sideshow are connected to earlier generations of circus performers. Most of what passes as a freak show today is vaudeville-style performance involving musicians, artists, and people with unusual abilities such as acrobatics and contortion, fire eating, sword swallowing, pounding nails into various parts of the body, walking on glass or burning coals, and escaping. It is rare to find people with congenital disabilities in troupes such as The Jim Rose Circus, The Bindlestiff Family Circus, Circus Contraption, and Yard Dogs Road Show, where often the performers are extremely fit and able-bodied (fig. 17.10). When people with disabilities are included, there is less of a divide between the born and the made, since they are also performing. For example, Jennifer Miller is a woman with a beard who has worked with the Bindlestiffs, at Coney Island, and her own troupe, Circus Amok. Some venues showcase her beard more than others, however she is also a skilled acrobat who dances, chews light bulbs, and delivers monologues that combine comedy and social criticism (fig. 17.11). Tony Torres was a dwarf who exhibited himself at Coney Island’s Sideshows by the Seashore. But he did so in the guise of Koko the Killer Clown, an act that involved wearing heavy makeup, dancing, cracking jokes, and making balloon animals. Born freaks are thus no longer the sideshow’s elite, nor are they considered necessary to its success since the contemporary circus relies almost entirely on working acts, and performers with sensational talents, skills, or bodily adornments such as piercing, dreadlocks, and tattoos. What makes The 999 Eyes of Endless Dream stand out among contemporary freak shows is that so many of its performers are disabled, and disability is at the forefront of their acts: a dwarf chews on light bulbs and walks on crushed glass; a woman with no legs turns cartwheels and sings; the Lobster Girl ties knots with her unusual hands; Lobster Boy does magic; and all of them tell stories, both funny and sad, about living with a disability in America (fig. 17.12). In The Last American Freak Show filmmaker Richard Butchins explores how The 999 Eyes recalls and rescripts the traditional place of disability within the freak show. He asks what it means for a contemporary person with a disability to exhibit herself as a freak, and what he, as a person who is himself disabled, learns from his encounter with the freak show. Performing Disability Early in The Last American Freak Show, Butchins describes the genre as “a truly American art form.” In making this claim, he alludes to the fact that, although circuses and freak shows have a long history in Europe and other parts of the world, it was the American P. T. Barnum who first recognized their potential as a mode of commercialized mass entertainment, developing them into a form that has become known throughout the world. Given that the freak show came into its own in the United States, it makes sense that Butchins would travel there to investigate how it is faring in the new millennium. As the British Butchins observes the troupe, he participates in a long-standing European fascination with America that can be traced back to the writings of Hector St. John de Crèvecoeur, Alexis de Tocqueville, Charles Dickens, and many others. During their tour, The 999 Eyes drive from Oregon to Texas, stopping to perform in small cities and towns along the west coast and southwestern U.S. As he films the troupe, Butchins also documents the American landscape. Like his characters, his establishing shots also tend to capture places that are unsightly and marginal: highways, roadsides, parking lots and rest stops, motels, diners, dumpsters, and bars. Promoting itself as “the last genuine traveling freak show in the United States,” The 999 Eyes claims to be bringing the freak show back from the past, repackaged for the twenty-first century. Much as it recalls its precursors, this freak show is also decidedly modern (fig. 17.13). When we first meet them, many of the performers travel in a 1988 International Bluebird school bus owned by Laurent Martin, aka Lowrent the clown. The motor has been converted to run on used vegetable oil scavenged from the back of restaurants and anywhere else it can be found. Butchins uses infrared lights to film several late-night scenes in which the performers—still dressed from the evening’s show—search dumpsters for fuel. In his blog, he describes oil as an abundant national resource “which in the USA is everywhere because they fry everything they eat.” Whereas Barnum was the first to transport his circus by train, The 999 Eyes are pioneers in the technology of enviofuel. Taking advantage of others’ waste, the converted bus also provides a modern twist on the classic circus caravan, reflecting a contemporary awareness about the environmental impact of burning fossil fuel. In terms of personal style, the freaks are modern as well, adorned with dreadlocks, multicolored hair, piercings, tattoos, and heavy makeup. While technology is not a significant aspect of their performances, where a low-budget homemade aesthetic prevails, it is central to life offstage, where the troupe members communicate by email, quarrel over cell phone minutes, fly in by plane, shop at the mall, and watch CNN in their motel rooms. While The 999 Eyes enjoy the conveniences of the modern world, the troupe also calls itself “the last” of its kind, a phrase that gestures backward to a waning tradition. It may be closer to its nineteenth-century forerunners than any other contemporary sideshow in that it privileges the “born freak” over all other performers. Indeed, its claim to distinction is that it includes more born freaks than its competitors. During the 2006 tour, these include H. E. A. Burns, The Lobster Girl; Ken, The Elephant Man; a dwarf named Dierdre (aka Dame Demure, The Dancing Dwarf); Jackie, The Human Tripod; Erik, The Gentle Giant; and Jason Black, The Lobster Boy. On their website, the group defines a freak as “a human oddity that has chosen to share, celebrate and exploit his/her own genetic anomaly through performance.” 18 Here they uphold the carnies’ traditional reverence for born freaks, while adding a modern recognition of genetics as the cause of some of their disabilities. The performers’ online biographies are filled with exaggeration and pure humbug, knowingly evoking the rhetorical tradition of sideshow pamphlets. For example, it presents the story of Ken (aka The Elephant Man or Pegleg) as “an inspirational triumph over adversity”: Born in 1895, inflicted with the genetic disorder NF to the point of having one leg removed, Pegleg traveled the freakshow circuit. He stayed on until 1935 when scientists, whose goal it was to kill the freakshow for social control, stole him from the midway to experiment on and study him to prove that his condition was that of a sick human and not of a Fabulous Freak . . . because funding for the project was cut they decided to freeze him until more funds could be obtained. The funding never came and Poor Pegleg was forgotten. Until one day a kindly showman snuck into the basement of a medical anomalies laboratory. Her initial goal was to obtain a two-headed baby for her show, but it was there that she then discovered the man frozen. After defrosting Pegleg she set out to help him in his mission of revenge on the scientists who are still trying to destroy the freakshow Museum of Mutantstrosities by institutionalizing, exploiting and abusing freaks for medical answers and experimentation. Ken’s biography leaves no question about its veracity. However, its tale of evil scientists and kind show people alludes to an underlying historical truth, the long-standing conflict between the freak show’s investment in wonder and sensation (Fabulous Freak), and medicalized understandings of disability (a sick human). Show people have long been disdainful of the scientists’ cultural prestige at the same time that they sought to appropriate it by seeking experts who could validate the freak’s authenticity, and by calling themselves doctors, professors, and scientists. The 999 Eyes website expresses a similar ambivalence toward medical professionals in that it denigrates the treatment of people with disabilities as specimens to be studied and classified while at the same time giving Ken’s condition a medical name and providing a link to the Wikipedia article on neurofibromatosis. As was true of previous generations, the performers in The Last American Freak Show see The 99 Eyes as a source of community and affirmative self-expression. Butchins explains that the freak show gives them the means to come “out of the institution and the welfare office,” where people with disabilities have been relegated for generations. In the wake of the Americans with Disabilities Act, opportunities for inclusion in schools and the work place have increased. But it is still true that most people with disabilities are poor and have difficulty finding employment. They continue to face social prejudice, challenges of transportation and access, and discrimination in hiring.19 The performers in Butchins’s film resist becoming a part of the disability underclass by seizing control of their own representation. A disabled body is a hypervisible body, one that cannot escape being laden with an excess of meaning. In his classic study of stigma, Erving Goffman described how the stigmatized person must constantly manage his or her identity to avoid causing discomfort to others.20 The performers in 999 Eyes are all too familiar with the burden of other people’s pity, condescension, and disgust. They see the freak show as an opportunity to showcase their talents rather than their limitations, rescripting the identities available for people with disabilities. Much as The Last American Freak Show emphasizes The 999 Eyes’ confrontational and explicit presentation of disability, it also makes considerable effort to show that freaks are just like everyone else. In this, it recalls Tod Browning’s 1932 film Freaks, which featured some of the best-known congenitally disabled circus performers of its time. Many of the scenes in the first half of Freaks show the disabled actors engaged in ordinary activities like doing housework, socializing, rolling a cigarette, or getting dressed. These scenes aimed to normalize the characters by demonstrating that in spite of their unusual bodies, they are much like everybody else. The problem with Freaks was that as the story developed it turned into a horror film, trafficking in more clichéd associations between disability and malfeasance. Like Browning, Butchins expends a certain amount of footage to show his disabled characters engaged in everyday life tasks that normalize their disabilities. All the while, they talk about their feelings, showing their very human capacities for loneliness, pain, friendship, and humor. We see them lounging on a motel bed watching CNN, quarreling over who has to clean up, shopping at the mall, and nursing hangovers. Butchins interviews HEA Lobster Girl in a kitchen where she is cleaning up and preparing a drink. We watch Ken washing dishes and getting lost on the highway. Dierdre takes out the garbage, dressed in jeans and a t-shirt. At the same time, the film constantly reminds us of the freaks’ differences from ordinary people, pointing out the ways they are denied opportunities for full social integration. While nobody is getting rich, the members of The 999 Eyes have chosen bohemian scarcity as an alternative to the poverty and social marginality endured by many people with deforming disabilities. 21 When asked if she is worried about being exploited, Jackie, who is a musician and songwriter, claims that all forms of entertainment involve some degree of exploitation. “I love performing,” she remarks decisively, explaining that because of her disability, “there is no other arena for me to do what I want to do.” Deirdre is more ambivalent about her persona, the Dancing Dwarf. Her act includes dancing, walking on glass, eating light bulbs, and making jokes about her short stature (fig. 17.14). Onstage, she pushes the audience to confront their preconceptions about little people, while offstage she expresses concern that she is simply playing into stereotypes. “I’m sure if I were in touch with the dwarf community they would hate me for sending off such a bad image,” she confesses. Many of the acts play with stereotypes. Ken describes being teased as a child and bares his tumor-covered body, demanding that the spectators acknowledge their disgust, but also their desire to look. Jackie sings about being half a woman. Erik the giant claims that during tangles with the law he has avoided arrest because of his great height. That the freaks willingly flirt with self-exploitation is evident in an episode where they perform as extras in a self-financed horror film by Andrew Getty, grandson of billionaire John Paul Getty. The troupe takes a break from the tour to work with Getty, who explains that he has hired them to add an aura of menacing strangeness to the mis-en-scène. “I’m trying to show this town full of strangers,” he tells them. “I was thinking the only way to do that is to make them physically abnormal. . . . That’s the only way an audience will get it.” Butchins, who frequently uses voiceover to reflect on the meaning of the events he’s filmed, has little to say during this scene. Perhaps he believed that it would be more powerful if Getty’s ridiculous comments simply spoke for themselves. The film rarely ventures beyond the intimate circle formed by the troupe and their closest friends. Getty provides a view from the outside, confirming that disability still functions as an easy signifier of trouble and social disorder. The freaks themselves, accustomed to using their unusual bodies for profit and attention, seem unfazed by Getty’s uncritical reliance on such tired clichés. As long as they are paid, they seem to have no problem acting the part of sinister strangers. But even without comment, it’s hard to believe they don’t enjoy profiting from Getty’s foolishness. As in The 999 Eyes performances, these self-styled freaks are unconcerned with the promoting the respectable, uplifting images of people with disabilities favored by the able-bodied. They are quite willing to entertain stereotypes as long as they feel that they have something to gain from the situation. In deciding to film this troupe, Butchins was aware that he would need to confront his own assumptions about how people with disabilities can best negotiate the cultural meanings of stigma. He represents The Last Freak Show as a journey from skepticism to insight. His initial impressions of the troupe are not entirely positive. Their performances seem chaotic and amateurish, and he worries that the show is little more than self-exploitation. As time goes on, he comes to appreciate what the troupe is accomplishing, finding a inspiring sense of purpose beneath their raucous and lighthearted performances that resonates with his own understanding as a person with a disability. At every turn, The 99 Eyes reject polite, socially acceptable approaches to their differences. Butchins comes to understand their show as a refusal of able-bodied ideas about how the disabled should behave. Against critics who charge that The 999 Eyes, and his film, present negative stereotypes of disability, he affirms their commitment to self-expression, however crude and confrontational. “Go figure,” he writes sarcastically on his blog. A bunch of freaks decide to celebrate diversity in a way of their own choosing, why that will never do. It would seem that they are only … Handbook of Disability Studies EDITED BY GARY L.ALBRECHT KATHERINE DSEEIMAN MICHAEL BURY ( ® )Sage Publications lntematfonal Educational and Professional Publisher Thousand Oaks • London • New Delhi ( 1 )An Institutional History of Disability DAVID L. BRADDOCK SUSAN L. PARISH The primary objective of this chapter is to describe the institutional history of disability in Western society, establishing explicit connections between the social context in which people have lived and the ways in which disability has or has not been identified and addressed as a social problem. Our central thesis is that changing social and political perspectives on poverty during the seventeenth and eighteenth centuries, coupled with the development of increasingly medicalized interpretations of disability during the nineteenth and twentieth centuries, contributed to increasing segregation and stigmatization of persons with disabilities. However, a related thesis is that the congregation of people with similar disabilities for treatment and services also made possible the development of group identities, which ultimately facilitated the rise of political activism in the modern era. Impairment and Disability Throughout Western history, disability has existed at the intersection between the particular demands of a given impairment, society's interpretation of that impairment, and the larger political and economic context of disability. The contrast between disability and impairment informs a key underlying premise of this chapter: Disability exists as it is situated within the larger social context, while impairment is a biological condition. Lennard Davis (2000) has succinctly described the relationship between disability and impairment as follows: AUTHORS' NOTE: This chapter initially grew out of the American Association on Mental Retardation Distinguished Lecture, given by the first author at the 123rd national convention of the Association in New Orleans, Louisiana, on May 26, 1999. Research support for the further development of this work was provided during academic year 1999-2000 by the National Institute on Disability and Rehabilitation Research under the auspices of a Mary Switzer Research Fellowship to the first author. The second author, a doctoral student in the University of Illinois at Chicago's School of Public Health, was partially supported on a grant from the Administration on Developmental Disabilities, U.S. Department of Health and Human Services for the State of the States in Developmental Disabilities Project in the Department of Disability and Human Development at the University of Illinois at Chicago (UIC). The authors express their gratitude to Professors David Mitchell and Gary Albrecht in the UIC Department of Disability and Human Development and to Professor Paul Longmore of the Department of History at San Francisco State University for their comments on earlier drafts of the chapter. We also thank Mary Catherine Rizzolo, Leslie Chapital, and Stephen Rubin at UIC for research assistance. This chapter is copyright © 2001 by David L. Braddock and Susan L. Parish. For permission to reprint, contact the chapter authors. 11 12 DISABILITY STUDIES AS A FIELD Disability is not so much the lack of a sense or the presence of a physical or mental impairment as it is the reception and construction of that difference....An impairment is a physical fact, but a disability is a social construction. For example, lack of mobility is an impairment, but an environment without ramps turns that impairment into a disability ... a disability must be socially constructed; there must be an analysis of what it means to have or lack certain functions, appearance and so on. (P. 56) Davis notes that disability was not constituted as a social category prior to the eighteenth century, even though impairments were no doubt quite prevalent in the general population. Writing a history of disability in the West is a challenging undertaking. We will comment briefly on just three of the key problems facing researchers. First, the utilization of primary source evidence, the gold standard of historical research (Brundage 1989; Schafer 1980), is extremely limited in the literature, especially for periods preceding the nineteenth century (Brackley 1999). Recent historical accounts of disability have relied more heavily on primary source documentation but have generally limited their focus to the institutional nature of service delivery in the United States, beginning in the nineteenth century (Bredberg 1999; Brackley 1999; Ferguson 1994; Trent 1995;Wright and Digby 1996). While the constraints of writing a disability history within the confines of a concise book chapter have forced us to use secondary sources frequently, primary sources have been used when possible to reveal the rich historical fabric of a diverse and varied existence. A second limitation of many published historical accounts is that the archive mainly describes formal services and treatment approaches from the standpoint of the professionals who controlled the delivery of services (e.g., Barr 1904; Earle 1898; Obermann 1968; 'Scheerenberger 1983; Sheldon 1921); this institutional perspective has often eclipsed the perspectives of persons with disabilities and even their families. The reliance on professionals' records has reflected and legitimated professional behavior (Hirsch 1995). Historians, for example, have tended to rely on the public record of residential institutions while largely ignoring lay perspectives toward disability (Jackson 1998). Such a practice has occurred even though only a small fraction of the entire disabled population has ever been institutionalized, particularly prior to the twentieth century. Moreover, people with disabilities have only infrequently recorded accounts of their experiences, so historians are left to interpret "lived experience" vicariously through the filter of professionals who did leave extensive records {Porter 1987b; Rushton 1988). Thus, historians are often put in the perilous position of interpreting the his­ tory of people with disabilities based on the claims of professionals, although this posture has been soundly rejected in recent years by the disability movement (Anspach 1979; Carabello and Siegel 1996; Shapiro 1993; Ward and Schoultz 1996), which today advances the philosophy of "nothing about us without us" (Charlton 1998). The third limitation is that histories of disability are rarely representative of a broad cross disability perspective that depicts the historical interconnections across the full spectrum of mental, physical, and sensory disability. In this chapter, we will address disability history across this broad spectrum, but we will also explicitly examine the history of mental disability in greater depth. Overview of the Chapter The chapter begins with a discussion of the extensive presence of people with impairments in ancient times and moves forward chronologically to the present day. Ancient Western notions of impairment in Greece and Rome accepted the belief that persons with congenital impairments embodied the wrath of the gods and should be killed. Yet this view coexisted with the fact that those who acquired their disabilities later in life were often integrated into society as workers, citizens, and soldiers. During the Middle Ages, widespread belief in demonology as an etiology of impairment was counterbalanced by religious movements preaching An Institutional History of Disability 13 compassion and support toward persons with disabilities. Development of the first residential institutions for persons with disabilities is traced to the Middle Ages as well. In the early modern period through the dose of the eighteenth century, disability was strongly influenced by the rise of the scientific method during the Renaissance and by changing public perceptions toward poverty and disability. The radical intellectual revolution born of the Enlightenment, including scientists' subsequent emphasis on distinguishing mental illness from intellectual disability, is considered in some depth in this section of the chapter. Enlightenment thinking transformed fundamental concepts about the essential relationships between humans, nature, and God. This transformation involved the increasing legitimacy of science in society and led to the ascendancy of physicians, educators, and caretakers in the lives of persons with disabilities. Scientific inquiry into the medical aspects of impairment has been characterized by the development and application of increasingly complex diagnostic and etiological classification schemes. This process of categorizing persons with disabilities into the minutiae of their impairments resulted in the development of specialized treatments and residential and educational services but also established and reinforced notions of the boundaries between normalcy and aberrance in Western society. Disability in the American colonies during the seventeenth and eighteenth centuries is examined along with the subsequent development and proliferation across Europe of institutions for persons with mental disabilities and schools for the deaf and blind. In the American colonies, and later in the United States, persons with impairments were often perceived to menace the economic well-being of the community. The practices of auctioning off the care of disabled per­ sons to the highest bidder or running them out of town with threatened or real violence reflected an intimate connection between poverty and disability in this period of history. Our discussion of disability history in the nineteenth century acknowledges the significance of political organization by deaf advocates: the first rumblings of activism by people with disabilities. That nascent movement sharply contrasted with the contemporaneous exploitation of people with disabilities as freak show attractions and the ascendancy of the eugenics era. The onset of the twentieth century was marked by a dramatic expansion of residential institutions for persons with mental disabilities and by the rapidly increasing segregation of children and youth with disabilities in public schools. We trace developments for persons with physical disabilities, independent living, and the emergence of family, community, and consumer advocacy, and we discuss litigation that forged a constitutional right to treatment for persons with mental disabilities in the United States. The chapter also discusses international disability rights initiatives such as the United Nations' Standard Rules, the Americans with Disabilities Act, and various European antidiscrimination legislation such as Great Britain's Disability Discrimination Act of 1995. The chapter concludes with a consideration of disability priorities in the twenty­ first century. ANTIQUITY Prehistory Individuals with physical impairments have been part of the social order since well before the evolution of humans. There is also anthropological evidence of impaired members living in prehistoric subhuman primate groups. Berkson (1974, 1993) argues persuasively that monkey and ape groups include individuals who have fallen from trees or who have been injured by predators. [They] may survive in natural animal groups when their injury does not actually interfere with foraging or escape from predators. In other words, the injury may not be handicapping. l 14 DISABILITY STUDIES AS A FJELD Injured animals may survive and live in a group because group living itself can provide aid to adaptation. Mother monkeys provide care that compensates for even severe injuries, and other members of the group may "baby sit" injured babies, as they do other young of the group ...where predation pressure is low and food is plentiful, handicapped animals may live to be adults. (Berkson 1993:5-6) Citing work by Solecki (1971) and Stewart (1958), Berkson (1993) describes a published description of an adult Neanderthal male with severe arm and head injuries incurred at an early age. He accommodated the injury by using his teeth to hold objects. Berkson also uncovered research documenting the fact that disabling arthritis and other chronic impairments were com­ mon in Neanderthals (Goldstein 1969; Straus and Cave 1957). He concludes that individuals with both minor and even highly significant impairments were part of primate societies "even before the evolution of modern Homo sapiens" (p. 6). Thus, the presence of impairments among subsequent prehistoric Homo sapiens should not surprise us. The Old Testament Documentation of the treatment and life experiences of people with impairments during the earliest periods of recorded history is extremely limited. Edicts about disability offer some in­ sight into prevailing attitudes, but the messages that they convey are mixed. The Old Testament commanded, "Thou shalt not curse the deaf nor put a stumbling block before the blind, nor maketh the blind to wander out of the path" (Leviticus 19:14). Daniels {1997) argues that this Hebraic command in Leviticus is the first attempt by any nation to legislate for the protection of the <lea£ Daniels further asserts that 'deaf persons without speech were viewed as children un­ der Hebrew law and provided with the same protections as children. People were also reminded about their responsibilities toward one another with the injunction that "there will always be poor people in the land. Therefore, I command you to be open­ handed toward your brothers and toward the poor and needy in your land" (Deuteronomy 15:11). In contrast, the Old Testament also warned that if you do not carefully follow His commands and decrees . . . all these curses will come upon you and overtake you: the Lord will afflict you with madness, blindness and confusion of mind. At midday, you will grope around like a blind man in the dark. (Deuteronomy 28: 15, 28-29) These paradoxical statements reflect competing attitudes toward disability. While society seems to have recognized a charitable obligation to people with disabilities, disability was also perceived as a punishment meted out by God. The belief that illness was inflicted by an angry deity or by a supernatural power was widespread among ancient peoples (Rosen 1968). The Old Testament also supports the notion that people with disabilities were classified with prostitutes and menstruating women as unclean and were thereby prohibited from making sacrifices as priests. According to Stiker (1997), people with disabilities were allowed to otherwise participate in religious observances. The early Christian church, however, held that faith came from hearing (Romans 10:17), and therefore the deaf were necessarily without faith in the eyes of the church (Daniels 1997). In records dating back to 2000 B.C.E., the births of children with congenital impairments were used to predict future events for a community. In the Babylonian region, ancient Semitic Chaldean diviners of the future maintained a list of birth deformities and the specific prophetic meanings each foretold. The manifestation of disability was viewed as a portent of things to come (Warkany 1959). •.. An Institutional History of Disability 15 Ancient Greece and Rome Average life expectancy in ancient Greece and Rome did not generally exceed 37 and 44 years, respectively, for women and men. Due to the omnipresence of disease, war, poor prenatal care, malnutrition, and injury sustained during the hard work performed by most people, impairments and deformities were doubtless prevalent. Even such minor injuries as broken limbs would have produced disabling impairments in a majority of the population who were too poor to obtain medical care (Garland 1995). As Garland (1995) has noted, Life in the ancient world was nasty, brutish, and short. The most privileged were those who happened to be freeborn, well-to-do males in perfect health. But the overwhelming majority did not, of course, belong to that ideal category. (P. 11) In the midst of this society beset by endemic impairment, the Greeks and Romans had varied interpretations of persons with such conditions. Babies born with congenital deformities were often regarded as signs that their parents had displeased the gods. However, public support was available to individuals whose impairments precluded them from working. In some exceptional situations, having an impairment was not a barrier to attaining power. The Roman Emperor Claudius had significant congenital deformities, and Spartans elected a short-statured man as their king. In any case, care for persons with impairments would have been reserved for those few who were wealthy enough to afford it-disability for the vast majority of Greeks and Romans would have increased the extent to which they were marginalized and excluded from society and living in deprived economic conditions (Garland 1995). The notion that Greeks practiced infanticide of children with disabilities has been widely accepted (e.g., Mackelprang and Salsgiver 1996; Scheerenberger 1983; Woodill and Vekhe 1995). However, this practice was not as widespread as has been believed (Garland 1995). In ancient Greece and Rome, infanticide was practiced for economic reasons when there were too many children. In Sparta, however, children born with obvious physical deformities were put to death regardless of a family's means (Stiker 1997; Warkany 1959). Spartan law mandated the practice of killing newborns who had been born with deformities, while there is some limited evidence that Athenians may have been more inclined to raise such children (Garland 1995). Infants with deformities were sometimes perceived to represent the anger of the gods, and murdering such babies was a sacrifice intended to mollify the gods. Aberrancy within the species not only threatens the future and continuation of this species, but also announces, threatens, signifies a condemnation by the gods: a condemnation of the group ...an aberrancy within the corporeal order is an aberrancy in the social order. (Stiker 1997:40) Stiker (1997) further notes that the subjection of infants with deformities to death by exposure was specifically for infants we would today say have physical disabilities. Infants with hearing impairments, vision impairments, and mental retardation were not categorized as "deformed" and were not put to death, except perhaps for those most profoundly limited intellectually who could have been "diagnosed" early on. It is likely, however, that many children with physical impairments survived even in Sparta because their impairments would not have been evident until they passed the age at which killing them would have been contemplated (Gaw 1906b). Furthermore, adults with congenital disabilities were a presence in ancient Greece (Stiker 1997). M. L. Edwards's (1996, 1997) re­ views of the scant documentary records from ancient Greece indicates that deformity was not perceived as absolutely negative by the Greeks but that this perspective was developed by historians during the nineteenth century, who applied contemporary contempt for people with disabilities to their assessment of the ancient world. She further concludes that the assumption that deformity in a child was automatically associated with economic burden is not appropriate since many people with disabilities had jobs and earned income. It is difficult to determine from 16 DISABILITY STUDIES AS A FIELD these conflicting records the extent to which the infanticide of children with disabilities was practiced; what is clear is that people with congenital disabilities, broadly defined, existed in society, indicating that infants with disabilities were not uniformly put to death. Given high rates of disease and war, there was likely a higher prevalence of disability in ancient communities. Greeks who sustained injuries on the battlefield would often be expected to continue to fight, as mobility was not always a requisite for combat participation. Existing court records provide compelling evidence that the linkage between disability and entitlement to monetary support from the government was not absolute. Individuals with disabilities in Greece would have had to prove that they truly were economically needy and not just physically disabled to receive a small food grant (Edwards 1997). Greek records also substantiate a public acknowledgment of providing support for those who were classified as unable to work. Dating from at least the sixth century B.C.E., Athens offered modest public support for those individuals who were unable to work due to their impairments. The Constitution of Athens provides information regarding the process of providing this support: The. Council inspects those who are disabled. For there is a law which bids those who possess less than three minai and who are incapacitated and incapable of work to undergo inspection by the Council, which is to give them two obols per day each at public expense. {Garland 1995:35) Military medicine was in widespread use in ancient Greece, as was public support of men dis­ abled by war (Stiker 1997). Pensions were granted to soldiers who had been injured in battle, and food was provided to others with disabilities who could prove their economic need. The conclusion that Edwards (1997) draws regarding the status of people with disabilities during ancient Greek times is telling: The consequences of physical handicaps varied according to the context and to the individual. Without a codified notion of "able-bodied" on one hand and "disabled" on the other, people were not automatically assigned to one category or the other on the basis of medical diagnosis or appearance....We see very few instances in which people with physical handicaps were banned a priori from certain roles ...people with disabilities in Greek society were integral to the society. There is no indication that people with physical handicaps in the ancient Greek world identified themselves or were identified as a distinct minority group. (Pp. 43-44) Surviving historical and literary accounts have indicated that prosthetic devices were used by persons who sustained injuries during battle or had congenital limb malformations (Bliquez 1983). Herodotus recounts a warrior amputating his own foot to free himself and escape his impending execution. In 479 B.C.E., this warrior supported himself fighting on the battlefield by using a wood prosthesis. In a tomb dating to 300 B.C.E., a skeleton was found with an artificial lower right leg. This prosthesis was made of bronze, indicating that its owner was a person of some wealth. Early Roman law chiefly protected the property rights of people with disabilities. Persons who were designated as intellectually deficient in early Roman times were provided with guardians to assist in the management of their affairs {Winzer 1993). Deaf persons capable of speech were granted authority to discharge legal obligations such as marriage and property ownership. Deaf persons without speech were classified alongside persons with intellectual disabilities, mental illness, and infants and were forbidden to perform any legal acts (Gaw 1906a, 1906b, 1907; Hodgson 1953). In the Roman Empire, short-statured slaves and slaves with intellectual disabilities were of­ ten maintained by wealthy men for entertainment purposes. "Keeping" such individuals was considered good luck. The earliest records of court jesters date from Egyptian pharaohs of the Fifth Dynasty who kept short-statured people (Welsford [1935] 1966). Both ancient China and An Institutional History of Disability 17 pre-Colombian American civilizations had short-statured people serve as court jesters as well (Willeford 1969). Later Roman law enumerated the specific rights of people with disabilities. In the sixth cen­ tury A.C.E., the Justinian Code classified persons with disabilities in detail and delineated rights pertaining to different types and degrees of disability; for example, people with mental disabili­ ties were not permitted to marry. Drawing on the Jewish discrimination between degrees of deafness (Daniels 1997), the Justinian Code identified five classes of deafness (Gaw 1906a, 1906b, 1907). The code became the basis of law in most European countries from the sixth to the eighteenth centuries. Writings from the New Testament offer insight into attitudes about disability shortly after the time of Christ. Mark records Jesus' healing of a blind man by spitting and laying hands on the man's eyes (Marcus 1999; Mark 8:22-26). Mark and Matthew also record Jesus' healing of a man with paralysis (Black 1996; Mark 2:1-12; Matthew 8:5-13). The New Testament relates other stories of people with leprosy, epilepsy, mental illness, deafness, and blindness being healed by Christ (Black 1996). These healing tales may be interpreted to mean that people "have disabilities . . .to show the power of God" (Black 1996:29). When asked whether a blind man's sin or his parents' sin had caused the man's blindness, Jesus replied that it was neither but rather a mechanism for "God's work [to be] revealed in him" (John 9:3; Black 1996:29). However, the fact that the disciples believed that the man's blindness was caused by sin may be indicative of prevailing wisdom regarding the supernatural etiology of this condition at the time. Interpreting disability in antiquity is difficult in that the time span considered is vast, and competing attitudes toward disability are evident at many points. Writings from the Old Testament suggest paradoxical attitudes, which exhorted society to be generous and kind toward individuals with impairments, while also declaring that impairment was a mark of the wrath of God. Ancient Greece and Rome offer similarly complex interpretations of impairment. The killing of newborns with congenital impairments existed in some form throughout Greece and Rome, and society clearly perceived the birth of a child with congenital anomalies as the mark of the anger of the gods. However, the provision of pensions to soldiers injured on the battle­ field was also a part of ancient Athenian life, and citizens with impairments were widely known to have worked at different trades. Impairment at the time of Christ was similarly fraught with different meanings, offering both redemption opportunities for kind strangers and signifying superstition. In the ancient world, impairment was accepted, at least in part, as an aspect of the course of life. MIDDLE AGES In the fourth to sixth centuries A.C.E., monastically inspired hospices for blind persons were established in what is now Turkey, Syria, and France. These hospices were organized as refuges for people with disabilities within existing religious enclaves (Winzer 1993). Bishop Nicholas cared for persons with intellectual disabilities in a hospice in southern Turkey during the fourth century, and the Belgian village of Gheel initiated the support of persons with mental disabilities in family care settings in the thirteenth century (Roosens 1979; Stevens 1858). The latter community provided vocational opportunities in a community setting that included an infirmary and a church centered around the shrine of St. Dymphna (Kroll 1973; Pollock 1945; Rumbaut 1972). By the sixth century A.C.E., institutions to segregate people with Hansen's dis­ ease (leprosy) were developing sporadically. Germany and Italy had hundreds of these facilities by the Early Middle Ages (Howard 1789; Weymouth 1938). Demonology Many disabling conditions, including intellectual disability, mental illness, deafness, and epi­ lepsy, were thought to have supernatural or demonological causes during the medieval period. 18 DISABILITY STUDIES AS A FIELD The devil was believed to cause epilepsy (Alexander and Selesnick 1964). Belief in demonic possession as a primary etiology of mental illness led to attempted cures based on religious ideas about exorcism (Clay 1966; Neaman 1978). Attempts to cure people with disabilities from early medieval times reflect supernatural beliefs in the abilities of magic and religious elements. For instance, Anglo-Saxons offered the following antidote to mental illness: A pleasant drink against insanity. Put in ale hassock, lupine, carrot, fennel, radish, betony, water-agrimony, marche, rue, wormwood, cat's mint, elecampane, enchanter's night­ shade, wild teazle. Sing twelve Masses over the drink, and let the patient drink it. He will soon be better. (Russell 1980:45) Interest in persecuting witches developed gradually, culminating in the craze that began in 1450 (Russell 1980). During the Middle Ages, the first heresy executions occurred in France in 1022, and thousands of so-called witches were subsequently executed (Russell 1972). Persecution was frequently led by the Catholic Church, although Protestant European countries also followed papal orders regarding the execution of witches. Pope Innocent IV authorized the seizure of heretics' goods, their imprisonment, torture, and execution (Russell 1980). In 1484, Pope Innocent VIII declared war on witches (Russell 1980). While it is acknowledged that dis­ abled persons were among those who were persecuted, the extent to which this occurred is not known. It seems likely that persons whose impairments were not amenable to contemporary treatment, particularly those with mental illness, would have been disproportionately affected by … one Introduction: Global Disability Studies ******************************************************* Introduction Disability studies understand their subject matter as social, cultural and political phenomena. In defining terms, describing positions and laying foundations, we will interrogate the literature in ways that encourage us to think about where we sit/stand in relation to pan-national and cross-disciplinary perspectives on disability that have the potential to support the self-empowerment of disabled people. This first chapter sets the theoretical tone. The global nature of disability The word ‘disability’ hints at something missing either fiscally, physically, mentally or legally (Davis, 1995: xiii). To be disabled evokes a marginalised place in society, culture, economics and politics. It is concentrated in some parts of the globe more than others, caused by armed conflict and violence, malnutrition, rising populations, child labour and poverty. Paradoxically, it is increasingly found to be everywhere, due to the expo- nential rise in the number of psychiatric, administrative and educational labels over the last few decades. Disability affects us all, transcending class, nation and wealth. The notion of the TAB – Temporarily Able Bodied – recognises that many people will at some point become disabled (Marks, 1999a: 18). Most impairments are acquired (97%) rather than congenital (born with) and world estimates suggest a figure of around 500–650 million disabled people, or one in ten of the population (Disabled-World. com, 2009), with this expected to rise to around 800 million by the year 2015 (Peters et al., 2008). Currently, 150 million of these are children (Grech, 2008) and it is esti- mated that 386 million of the world’s working-age population are disabled (Disabled- World.com, 2009). 88% live in the world’s poorest countries and 90% of those in rural areas (Marks, 1999a). For example, India has a population of one billion and approxi- mately 70 million are disabled (Ghai, 2002). A 1987 survey in China conservatively accounted for 51.64 million disabled people (Shen et al., 2008). In the USA, 19.3% or 49.7 million of the ‘civilian non-institutionalised population of five years or older’ are ( 01-Goodley-4054-Ch-01.indd 1 ) ( 27/07/2010 6:55:42 PM ) 2 Disability Studies disabled (Quinlan et al., 2008). This makes disabled people the largest minority grouping in an already crowded theatre of multiculturalism (Davis, 1995). We know that there are global discrepancies and intra-national differences. There are more dis- abled people in the Southern hemisphere (Stone, 1999) and you are more likely to be labelled as schizophrenic if you are black than if you are non-black in Britain (Beresford and Wilson, 2000a). Disabled people are more likely to be victims of rape and violence, less likely to receive legal protection, more likely to be excluded from mass education, be underrepresented in positions of power and more reliant on state benefits and/or charity (Meekosha, 2008). As children they remain underrepresented in mainstream schools, work, leisure and communities (McLaughlin et al., 2008). As adults, disabled people do not enjoy equitable access to human, economic and social capital resources (Priestley, 2001). If we accept Marx’s view that charity is the perfume of the sewers of capitalism, then disabled people are subjected to the bitter/sweet interventions of char- ity. Of the 200 or so countries in the world, only a third have anti-discriminatory dis- ability legislation and many of these laws are questionable in terms of their legislative potency (United Nations Department of Public Information, 2008). Thinking point: Identify, via the Internet, disability-related social policy or anti-discriminatory legislation in your own country. What areas of public life are addressed by these documents? Disabled people are likely to suffer socio-economic hardship. In rich countries, the expanse of the free market, the proliferation of human, welfare, social, educa- tional services and professionals and the increasing need to be ‘intellectually able’ and ‘physically fit’ for work, makes disabled people economically vulnerable (Barnes and Roulstone, 2005). Impaired foetuses are eradicated everyday as a consequence of antenatal tests and reproductive technologies (Kittay, 2006). Alive, people with impairments are ignored, pitied, patronised, objectified and fetishised. Their very presence raises questions about the ‘right to die’ and ‘assisted suicide’ (Shakespeare, 2006a). And while impaired bodies and minds have always been part of everyday life, demeaning societal responses to impairment – which we can define as ‘disablement’ (Oliver, 1990) or ‘disablism’ (Thomas, 2007) – are historically and culturally relative. Disability studies aim to make sense of this relativity. The politics of disability Disabled people have challenged their social exclusion through their politics and disabil- ity studies have developed to accompany this politicisation: to assist disabled people in their fight for full equality (Thomas, 2004: 571). Pinpointing the exact origins of disabled people’s politics is impossible (Shakespeare, 2006b). We know that over the nineteenth and twentieth centuries, disabled people’s experiences of institutions, eugenics and the Holocaust galvanised many to organise collectively against the oppressive regimes of medi- cine, science and professional control (Wolfensberger, 1981; Barnes, 1991; Noll and Trent, 2004; Longman and Umansky, 2001; Snyder and Mitchell, 2006; Gabel and Danforth, 2008a). The rise of new social movements, such as feminist, queer, working-class and ( 01-Goodley-4054-Ch-01.indd 2 ) ( 27/07/2010 6:55:42 PM ) Introduction: Global Disability Studies 3 black civil rights movements in the 1960s, enhanced the radicalisation of disabled people (Boggs, 1996). Disability studies developed, for Meekosha (2004: 724), in similar ways to Women’s and Black Studies as a new interdisciplinary sphere of scholarly work. Peo- ple with intellectual disabilities (previously ‘mental retardation’) demanded a rethink of their status through pioneering the self-advocacy movement (Goodley, 2000), while sur- vivors of mental health hospitals and services (hitherto ‘the mentally ill’) demonstrated against psychiatric labelling (Sayce, 2000). Together, disabled people have exposed the material conditions of exclusion magnified through capitalism (Oliver, 1990), while also developing personal and political responses to normalising society (e.g. Morris, 1991, 1992, 1996; Shakespeare et al., 1996). The depth of activism is captured through ref- erence to the (admittedly loose and Anglo-centric) typology adapted from Oliver and Zarb (1989) and Oliver (1990). Historically, disabled people were supported via patron- age and charity, through organisations for disabled people which provide specialist ser- vices, consultation and advice from professional agencies (e.g. Royal National Institute for the Blind, Spastics Society). In time, economic and parliamentarian organisations for disabled people lobbied governments for changes in legislation to protect the rights of disabled people (e.g. Disablement Income Group, Disability Alliance, Disability Rights Commission). Such pressure was enhanced through the expanding activist network, where organisations of disabled people campaigned for collective action and conscious- ness raising (e.g. Direct Action Network, Sisters Against Disablement, Not Dead Yet). As these groups grew, so too did the number of co-ordinating organisations of disabled people at (inter)national levels (e.g. Disabled People’s International). Disability politics, particularly activist and co-ordinating forms, have been felt by nation states and supra- national organisations. The United Nations Department of Economic and Social Affairs (2009) reports how disability was placed on the radar of United Nations’ policies and programmes by a raft of developments, including the 1981 International Year of Dis- abled Persons, the adoption of the United Nations World Programme of Action Con- cerning Disabled People (1982) and the release of the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993), all of which set in place systems for the regular collection and dissemination of information on disability and the promotion of disability-focused programmes. National responses are evidenced in the constitution of anti-discriminatory legislation, including the 1990 Americans with Disabilities Act, Disability Discrimination Acts of 1992 and 1995 (in Australia and the UK, respectively) and Malaysian Persons with Disabilities Act (2007). Over the last couple of years, (some) countries have ratified the UN Convention on the Rights of Persons with Disabilities. We have seen growing recognition of the need for inclusive forms of education (www. inclusion-international.org) and support for poorer countries in relation to their dis- abled members (www.worldbank.org/disability/gpdd). The Decade of Disabled Persons (1983–1992) was a fitting testimony, not simply to a widening participation agenda on the part of nations, but to the growing influence of disabled people’s own organisations (Barnes, 2002). The Disabled People’s Movement has revolutionised global understandings of dis- ability. By raising the personal experience of disabled people as the primary source of knowledge and identifying disability as a social problem that should be addressed by socio-political interventions, the Disabled People’s Movement has politicised disabil- ity (Vehmas, 2008: 21). We can trace many inter/national stories of disability politics. The first Disabled People’s International (DPI) World Congress was held in Singapore ( 01-Goodley-4054-Ch-01.indd 3 ) ( 27/07/ 2010 6:55:42 PM ) 4 Disability Studies in 1981. Organisations came together from their national contexts to work towards a global political response. Since this time DPI has provided an essential hub for the sharing of campaign successes and the raising of transnational issues such as inclusive education and human rights. The historical legacy of the Disabled People’s Movement can be found across the globe through the presence of Centres for Independent Living that offer not only services to disabled people, but also work with their struggles for equity (Charlton, 1998; Barnes and Mercer, 2006). We have seen the development of regional organisations such as Asia-Pacific Development Center on Disability (www. apcdproject.org) that responds to local issues facing disabled people in some of the poorest countries, such as community-based rehabilitation, basic literacy programmes and support for families. In rich parts of the world, such as the Nordic countries, Canada and the USA, the Disabled People’s Movement has been heavily influenced by the self-advocacy movement organised by people with the label of intellectual dis- abilities (Williams and Shoultz, 1982). Organisations of the Blind were particularly strong in India, participating in hunger strikes to push for anti-discriminatory legisla- tion (Chander, 2008). Britain saw the establishment of the United Kingdom’s Disabled People’s Council (formerly the British Council of Organisations of Disabled People), which has grown from the early political impact of organisations such as UPIAS (Union of the Physically Impaired Against Segregation) in the 1960s and 1970s (Campbell and Oliver, 1996). On the ground, disabled people’s organisations have enacted institu- tional change through the delivery of disability equality training courses (Barnes, 2002), which seek to educate organisations to adopt more enabling philosophies and practices. This has created a new form of labour for disabled people. Thinking point: Disabled trainers offer expert advice on eradicating the conditions of exclusion in areas such as education (w w w.diseed.org. uk; www.openroad.net.au/access/dakit/welcome.htm) and employment ( www. breakthrough-uk.com; www.independentliving.org/indexen.html). On personal matters, disabled people have organised around inclusive play and leisure, social and sexual relationships (w w w.outsiders.org.uk/home). Andculturally, disabled people have contributed immeasurably in the areas of arts, literature, music and performance (e.g.www.disabilityartsonline. org.uk/home). Visit these websites. How do you think these organisations have influenced wider ideas around disability? While a plethora of helping professions have grown around disability, disabled people have themselves had a huge impact on professional, cultural and political life. Disabled people were specifically mentioned in Barack Obama’s President-elect victory speech in 2008 and there is a growing historical awareness of their contri- bution to politics (e.g. Rosa Luxemburg, Antonio Gramsci, Woodrow Wilson) and culture (e.g. Frida Kahlo, Helen Keller, Christopher Nolan, Ian Dury, Kurt Kobain). This book is not the place for a detailed exposition of disability activism (for exam- ples, see instead Chamberlin, 1990; Priestley, 1999; Meekosha, 2002; Barnes and Mercer, 2006; Gabel and Danforth, 2008). What is important to keep in mind is the breadth of disability activism that continues to influence debates within disability studies. The mantra ‘Nothing about us, without us’ (Charlton, 1998) asks pertinent questions about the ownership of disability studies. Across the globe, the priorities ( 01-Goodley-4054-Ch-01 .indd 4 ) ( 27/07/2010 6:55:43 PM ) Introduction: Global Disability Studies 5 of disabled people’s organisations say much about their nation’s (lack of) welfare system, view of the citizen (Dwyer, 2004), cultural ideas around disability (Watson et al., 2003) and the perceived importance of disability in comparison with other socio-economic inequalities (Armstrong et al., 2002). Thinking point: Blackmore (2009) gathered information from the British Charity Commission for 2007–2008 financial years. All voluntary sector organisations have to complete and submit annual reports by law to the Commission. These annual reports are therefore legally binding and accurate. He found the following figures: Organisations for disabled people (traditionally charities): Leonard Cheshire = income £149,655,000; spending £146,046,000; surplus £3,609,000 Mencap = £183,456,000; spending £176,901,000; surplus £9,615,000 Organisation of disabled people (traditionally activist organisations): UKDPC = income £167,920; spending £187,082; deficit –£19,162 People First = income £288,236; spending £274,197; surplus £14,039 What do these figures say to you about the contemporary status of charity and patronage in the lives of disabled people in Britain? Defining disability: from pathology to politics Official definitions of disability reflect the organisational requirements of governments, their institutions and key welfare professionals. In Britain, for example, the Disability Discrimination Act (DDA) (HMSO, 1995: section 1.1) describes a disabled person as ‘anyone with a physical or mental impairment, which has a substantial and long-term adverse effect upon their ability to carry out normal day-to-day activities’. This includes physical impairments (weakening of a part of the body caused through illness, by acci- dent or from birth, including blindness, deafness, heart disease or the paralysis of a limb); mental impairment (such as learning disabilities and all recognised mental ill- nesses); that the disability is substantial (does not have to be severe, but is more than minor or trivial), with a long-term adverse effect (more than 12 months) and influences normal day-to-day activity (your mobility; manual dexterity; physical co-ordination; continence; ability to lift, carry or otherwise move everyday objects; speech, hearing or eyesight; memory or ability to concentrate, learn or understand; or perception of the risk of physical danger). These administrative definitions allow nation states to identify those who qualify for welfare. Simultaneously, though, these definitions individualise the problems of disability. The DDA definition says something very simple: impairment, whether it be physical or ‘of mind’, results in and creates disability. Hence, impairment and disability are collapsed together as synonymous concepts. Societies are predisposed to understand disability as a personal tragedy inflicting damage upon the mind and body, requiring treatment, rehabilitation or (at its most ( 01-Goodley-4054-Ch-01.indd 5 ) ( 27/07/2010 6:55:43 PM ) 6 Disability Studies logical extreme) cure (Barnes, 1990). Following this, impairments lead to a myriad of disabilities – disabled childhoods, disabled learning, disabled personal relationships, disabled sex lives, disabled parenting, disabled psychologies and so on. ‘The disabled’ are dependent on state and professional intervention (Morris, 1993b) and their only hope is to adjust to a lacking body or mind. Drawing on the work of Olkin and other disability scholars it is possible to identify two complementary worldviews that situate the predicament of disability firmly within the individual (Table 1.1). Disability studies are critical responses to these two cultural extremes, presented in Table 1.1, of supernatural vision and/or medical specimen (Snyder and Mitchell, 2001: 380). The moral position views disability as a sin (a punishment from God forgiven through divine intervention), while the medical perspective views disability as pathol- ogy (a physical, sensory or cognitive failing that tragically ‘handicaps’ those ‘afflicted’). Following Snyder and Mitchell (2001: 379), moral positions have included disability as a reflection of God’s dismay (ancient Greece), as evidence of an intimacy with God (medieval Europe) and a divine response to parental wrongdoing (Renaissance period). The medical model is a modern outlook (Christensen, 1996; Sachs, 2008). The church benefits from the moral position while the paramedical professions gain from the med- ical model. The eugenics movement of the early twentieth century, which accompanied the rise in the status of science and capitalism, located the burden of disability in the unproductive flawed individual (Fernald, 1912). Following Naidoo (2009), medicine has conceptualised disability as a distinct pathology (a pathogenic view) rather than a place on a continuum of dis/ease (a salutogenic position) or in terms of capacities and strengths (a fortigenic approach). The medical model becomes hegemonic – that is dominant – and encourages the disabled entity to be framed in terms of assisted suicide, euthanasia and antenatal termination. The human worth of disabled people is rendered highly questionable through the growing use of reproductive technologies. And as medicine intervenes so disabled bodies are made increasingly undesirable. For Oliver (1990), moral and medical approaches promote an individual model of disability, reducing the problem of disability to the flawed tragedy of individual personhood treatable through the interventions of charities and healthcare professionals. Thinking point: The first Professor of Disability Studies in Britain, Mike Oliver, made the following observation about professionals: The medical profession, because of its power and dominance, has spawned a whole range of pseudo-professions in its own image – physiotherapy, occupational therapy, speech therapy, clinical psychology – each one geared to the same aim – the restoration of normality. And each of these pseudo- professions develops its own knowledge base and set of skills to facilitate this, organising interventions and intrusions into disabled peoples’ lives on the basis of claims to discreet and limited knowledge and skills’. (Oliver, 1996: 37) To what extent do you dis/agree with this observation? Professionals and disability are clearly intertwined. McLaughlin et al. (2008) inter- viewed the parents of a one-year-old child, with the label of Down syndrome, who by that time had met with 124 professionals. Many bio-medical professions stipulate that impairment has such a traumatic physical or psychological impact upon the person that they will be unable to achieve a reasonable quality of life (Barnes, 1991: ix). ( 01-Goodley-4054-Ch-01.indd 6 ) ( 27/07/2010 6:55:43 PM ) Introduction: Global Disability Studies 7 Table 1.1 Two dominant perspectives of disability (as) impairment Disability as a moral condition Disability as a medical condition ( 01-Goodley-4054-Ch-01.indd 7 ) ( 27/07/2010 6:55:43 PM ) Meaning Disability is a defect caused by moral lapse or sins. The reification of sin or evil, failure or a test of faith. Includes myth that as one sense is impaired by disability another is heightened, i.e. the blind seer. Disability is a medical problem that resides in the individual – a defect in or a failure of a bodily system that is inherently abnormal and pathological. Impairment and disability are conflated, i.e. the Down syndrome child. Moral Implications Shame to the person with the disability and their family. The family must address their immoral nature as evidenced through the presence of a disabled family member. Repudiates the view of disability as a lesion on the soul but may blame person or family for healthcare habits (e.g. Type A personality leads to heart attack) and promulgates view of disability as a personal tragedy. Sample Idea God gives us only what we can bear. Example: (Gaelic plaque) ‘May those who love us, love us. And those who don’t love us, may God turn their hearts; and if he doesn’t turn their hearts may he turn their ankles so we’ll know them by their limping.’ Origins Oldest of all disability models but, arguably, still the most prevalent worldwide. Patients are described clinically (e.g. ‘patient suffers from Trisomy 21/Down syndrome’ or ‘there is an incomplete lesion at the C4 level’). Isolation of body parts and view of people with disabilities (PWD) as atypical, abnormal and pathological. Mid-1800s onwards. Underlies most rehabilitation facilities and most rehabilitation journals in rich countries. Goals of Intervention Benefits of Model Negative Effects Spiritual or divine or acceptance. Increased faith and forbearance. Finding meaning and purpose in affliction. Acceptance of being ‘selected’ to have a disability, feeling a relationship with God, having a sense of greater purpose. Some impairments understood as evidence of spiritual embodiment (e.g. pure simple child). Being ostracised from family and community, feeling profound shame, having to hide disability symptoms or the person with a disability. Disability exposes sinful (past and present) lives of family. Patients or clients are expected to avail themselves of services offered by trained professionals with the promise of cure (the amelioration of the physical condition to the greatest extent possible); rehabilitation (the adjustment of the person to their condition) or adjustment (adjust to live as a PWD). Promotes faith in medical intervention, a defined patient role and offers a label as explanation. Medical and technological advances in key services of the welfare state have improved the lives of PWD. Paternalism, pathologisation and the promotion of benevolence. Interventions on PWD rather than with. Promotes research by outsiders and services for, but not by, disabled people. Sources: Adapted from Oliver, 1996; Goodley, 2000; Olkin, 2001, 2002, 2009; Barnes and Mercer, 2003. 8 Disability Studies Linton (1998a) and Sherry (2006) suggest that this individual discourse creates a number of ‘fault lines’: disability is cast as an essentialist condition (with organic aetiologies); disabled people are treated as objects rather than as authors of their own lives; ‘person fixing’ rather than ‘context changing’ interventions are circulated; the power of health and social care professionals intensifies and the tyranny of normality is accentuated. Disabled people are infantilised, constructed as helpless and viewed as asexual (McRuer and Wilkerson, 2003: 10). For Abberley (1987: 18), presenting the disadvantage of disability as the consequence of a ‘naturalised impairment’ or ‘biological flaw’ lets exclusionary society off the hook. For Greenop (2009), more and more people are being made aware that medicine makes promises it cannot keep, fails to fix ‘the problem’ of disability, creates depend- ency, denies individuals use of their own self-care strategies and may have iatrogenic consequences of side-effects and unforeseen complications (Greenop, 2009).1 Indeed, across society, the growth in complementary therapies as alternatives to medicine and evidence of medical non-compliance of between 30% and 50% on the part of people in receipt of medical treatments (with £230 million worth of prescription drugs being incarcerated in the UK in 2002, due to non-usage), indicate that people are growing ever more critical of medicine (Greenop, 2009). Similarly, disabled people have offered their own criticisms of and alternatives to medicalisation. Key to these counter-views is the growing awareness of the social, cultural, historical, economic, relational and political factors that dis-able people. Disability studies dislodge disability from its medicalised and moral origins (Herndon, 2002: 122). ‘Dis/ability’ is not natural. Dis/ ability is socially constructed. In Britain, the Union of the Physically Impaired Against Segregation (UPIAS, 1976: 3–4), devised the following definitions to acknowledge the role of society: Impairment – lacking part of or all of a limb, or having a defective limb organism or mechanism of the body. Disability – the disadvantage or restriction of activity caused by a con- temporary social organisation which takes no account of people who have physical impairments and thus excludes them from mainstream social activities. This was later adapted by the Disabled People’s International (DPI) definition: IMPAIRMENT: is the functional limitation within the individual caused by physical, mental or sensory impairment. DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. (DPI, 1982) These definitions acknowledge impairment but politicise disability. Impairment is defined as a form of biological, cognitive, sensory or psychological difference that is defined often within a medical context and disability is the negative social reaction to those differences (Sherry, 2007: 10). Disability is understood as an act of exclu- sion: people are disabled by contemporary society. This concept is extended by Thomas (2007: 73), in her definition of disablism as ‘a form of social oppression involving ( 01-Goodley-4054-Ch-01.indd 8 ) ( 27/07/2010 6:55:43 PM ) Introduction: Global Disability Studies 9 the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well being’. This is help- ful because it permits disablism to sit alongside other forms of oppression, includ- ing hetero/sexism and racism. Disability is recognised as a phenomenon of cultural, political and socio-economic conditions (Abberley, 1987), disablism recognises the psychological, cultural and structural crimes against disabled people (Thomas, 2007) and disablement captures the practical consequences of disablism (Oliver, 1990). Thinking point: The definitions of ‘impairment’, ‘disability’, ‘disablism’ and ‘disablement’ presented above are Anglocentric: they reflect the preferred terms of Britishdisability studies scholars. Inother English-speaking nations, terminology morphs and changes. ‘Disabled people’ (Britain) are referred to in terms of People First language in the USA as ‘people with disabilities’. The North American preference for ‘people with intellectual disabilities’ (previously and now unacceptably ‘the mentally retarded’ or ‘the mentally handicapped’) are also related to other terms around the globe, including ‘people with learning difficulties’ (Britain) and ‘people with developmental disabilities’ (Australia). Individuals historically diagnosed as ‘mentally ill’, having ‘psychiatric illnesses’ or ‘mental health problems’ now more commonly use terms such as ‘survivors of mental health systems’. And, while British scholars have addressed disablism, many North American writers have turned their attentions to ableism (see below). A helpful insight into some of the debates about disability language can be found in the publications coming out of Disability World (visit www.disabilityworld. org/aboutus.html#term) and Disabled Peoples’ International (www.dpi. org). It is also …