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 Minimum of 4 sources (course texts are allowed – please do NOT cite me!).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

· 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.
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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.
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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




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