Monday, June 25, 2007

Claiming Disability, Chpt 3

Chapter 3, "Divided Society"

"society works to divide up the human community and oppress some of its members" (34).

"Disabled people have existed predominantly as marginal figures, their contributions and perspectives are not generally noted" (36).

Linton discusses the role of voice (vox) in the rhetorics of disability and her statement is particularly relevant to discussions of online autism communities: "The most fundamental problem, though, is that disabled people's voices are almost completely absent from this picture, and so the understanding of disabled people's place in these situations is filtered through the experience of people who have never been in that place" (37).

Distinct categories that disabled people have occupied in Western history (Linton is referencing and elaborating on categories first described by Hanks and Hanks):

1. Pariah--"disabled people are denied most if not all claims to succor and to rights by the dominant nondisabled majority and are deemed a threat to the group itself" (38). "despised by society." "Denying or withholding resources or protection is one set of responses to disabled people deemed pariahs" (39). Nazi Germany.

Also, published reports of institutions and schools abusing autistic children and adults fits within this discussion. Numerous examples are seen in the media and noted on in regard to "electroshock therapy," neglect, and physical and emotional abuse. "A most profound example of withholding care and 'succor" can be seen in the United States, in the history of many of our institutions and asylums" (40).

"Disabled people around the world who are deemed pariahs by their own families and communities have lived through the terrible pain of being denied succor by the very persons to whom it would be most natural to turn. Practices ranging from withholding attention, food, love, and education to denying them life itself have been documented" (45).

2. Economic and Social Liability--"disabled people's being seen as impairing the economic well-being, as well as the vitality and viability, of a society" (45). The disabled are thought to drain economic resources and "deflect attention from other needs" (45). Rhetoric involves the "lifeboat image" of a "society abandoning the 'weaker' members to aid the survival of the group.

Couple this "lifeboat image" with technology and "There are at least two compteting ideas at work here. One is the belief that in the modern, industrialized world scientific and technological competence, along with advanced humanitarian and moral development, would lead the way toward the highest level of care and of concern ever evidenced. However, those modernist ideals mean the society would not tolerate being bogged down by those who can't keep up, who are thought to drain resources, or who remind us in any way of the limitations of our scientific capabilities" (46).

Economic concerns are particularly relevant to discussions on autism, especially considering the enormous costs that ABA, medication, chelation (if a parent chooses to go in that direction), tutoring, etc can cost parents.

Local responsibility of raising disabled child and, possibly, caring for disabled adult.

Important to note the distinction of those "in need" who are worthy of help and those who are not (47). Another important note: "dependency was deemed antithetical to citizenship" (qtd in Linton 48). Interesting for discussion on those with mental disabilities--what constitutes active citizenship (especially considering the focus on citizenship in the early American institutions as discussed in Trent), who gets to have citizenship, does one have to contribute economically to have citizenship, and how might all of this impact those who are mentally disabled? (Perhaps something to discuss in the corporitization/ethics of autism?)

Also, important to note: "America's glorification of independence has not served disabled people well" (48).

Interesting point to note for "supranatural section": "In the nineteenth century, there was a shift from the belief that disability was caused by supernatural agency to a biological explanation that held that treatment, or some form of rehabilitation, was the logical response to disability" (48). Discussion also found in Longmore... Thoughts to consider: how does our ideological shift during the 18th and 19th centuries influence autism treatments in the 21st century? Seems to be 2 rhetorics/discourses going on: Media--autism as a reflection of some demon, spirit, supernatural being, angel existing in the body of the individual. And, Media--autism as a biological defect or some active poison wrecking havoc on the autistic's body. Point to note is that there is some "other" at fault for the disabilities of the individual.

"Although medicine didn't overtly claim expertise in reducing the economic liability posed by disabled people, it did corner the market on attempts to contain the perceived negative social impact of disability" (49).

"The institutions that emerged in the twentieth century became teaching hospitals and research centers" (49).

"In the current climate in the United States of managed health care, there is a deep fear among disabled people that our lives will be weighed on an economic scale" (50).

Michael Berube writes: "I do not want to see a world in which human life is judged by the kind of cost-benefit analysis that weeds out those least likely to attain self-sufficiency and to provide adequate 'returns' on social investments" (qtd in Linton 51).

3. Tolerant Utilization--disabled people "are allowed to participate to the extent that they have the ability to fulfill certain roles and duties designated by the nondisabled majority as necessary" (51). "[T]hese situations are ripe for exploitation" (51)--freakshows and carnival acts.

4. Limited Participation--"disabled people's roles and status are largely derived from their ability to be productive in terms of the standards set by the dominant majority"(53). "[I]t is up to the individual to demonstrate worth and competence" and this model promotes "a false sense of acceptance because the norms and standards of the able-bodied majority are imposed and held up as the ideal to which all should aspire" (53). "Limited participation indicates the society's willingness to accept a disabled person among its ranks in any domain in which she or he can 'keep up' with the nondisabled" (53).

5. Laissez-Faire--"a steadfast relation to the protective group, despite handicap," (qtd in Linton 53) and the "obligation of the extended family to shelter and provide for its unfortunates continues, whether they are able to give their labor or not" (qtd in Linton 53). For Linton, this term means that society accepts the "idea of noninterference" as applied to social structures. "The society makes no effort to reconstruct its goals or acceptable means of achieving them to reflect a broader range of citizens, the society has accepted a laissez-faire approach to disability" (54). "Disabled people then are left in the uneviable position of having to keep up with norms and standards but with no opportuntity to shape them" (54).

6. Participation and Accomodation--"concerted efforts to accomodate all members of the group and to adapt the procedures and standards typically imposed to reflect a range of abilities, interests, and needs. This does not mean lowering standards in an absolute sense; it means that greater flexibility is evident and a broader range of objectives are set. These actions are based on moral, practical, religious, and/or rights-based approaches to full participation of all members of society" (54).

Thursday, June 21, 2007

Claiming Disability--Chpts 1 & 2

I finished reading Simi Linton's book last night and found it enormously informative and insightful. I wish I had found this book at the beginning of last semester.

Points for discussion:

Disability studies enables scholars to understand "disability as a social, political, and cultural phenomenon" (2).

Differences b/t "disability" and "impairment"--disability is a social construction

"the field of disability studies is even more mariginal in the academic culture than disabled people are in the civic culture. The enormous energy society expends keeping people with disabilities sequestered and in subordinate positions is matched by the academy's effort to justify that isolation and oppression" (3).

The disabled "are all bound together, not by [the] list of our collective symptoms but by the social and political circumstances that have forged us as a group" (4). For my research, I see this statement as important because it is not the symptoms of autism but the circumstances that constitute "autism" as a definition. Definitions of autism are not medically based but socially and politically...

"vantage point of the atypical"... "atypical experience as deficit and loss" (5)

Disability studies grounded in humanities and social/political contexts, not psychology, because psychology endorses notion of "normalcy," which "centers and priviledges certain types of behavior, functioning, and appearance" (6), psychology's emphasis on empiricism, and psychology's emphasis on the individual rather than the environment (6).

"Disability studies, in contrast, focuses on the external variables: the social, political, and intellectual contingencies that shape meaning and behavior" (6).

"The scholarship and curriculum practices housed in academic institutions play a significant role in the perpetuation of a divided and unequal society" (7).

Discussion on the different labels and meanings behind them in Chapter 2.

"the medicalization of disability cast human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy. Society, in agreeing to assign medical meaning to disability, collude to keep the issue within the purview of the medical establishment, to keep it a personal matter and 'treat' the condition and the person with the condition rather than 'treating' the social processes and policies that constrict disabled people's lives" (11). This seems to relate well to criticisms of Autism Speaks by the neurodiversity movement. The problem with Autism Speaks for some is that the organization treats autistic individuals as "abnormal" through their emphasis on bio-medical interventions rather than addressing the social practices that disable, e.g., lack of group homes to insure a higher quality of life for disabled individuals.

"When medical definitions of disability are dominant, it is logical to separate people according to biomedical condition through the use of diagnostic categories and to forefront medical perspectives on human variation. When disability is redefined as a social/ political category, people with a variety of conditions are identified as people with disabilities or disabled people, a group bound by common social and political experience" (12).

Interesting point for discussion in regard to high/low functioning of autism--big deal in autism circles-- "The question of who 'qualifies' as disabled is as answerable or as confounding as questions about any identity status. [...] The degree and significance of an individual's impairment is often less of an issue than the degree to which someone identifies as disabled" (12). I would say that Linton's claims here do not necessary apply to autism discussions. Issue of ethos in regard to who can identify themselves as high/low functioning, who is even considered autistic.

Disability is determined by disclosure.

"Nice words" such as "physically challenged," "able disabled," "handicapable," and "special people/children" "may be considered well-meaning attempts to inflate the value of people with disabilities, they convey the boosterism and do-gooder mentality endemic to the paternalistic agencies that control many disabled people's lives" (14).

"Overcoming a disability" is really about overcoming the "social stigma of having a disability" (17). "the individual's responsibility for her or his own success is paramount." The disabled are required to "manage an inaccessible environment rather than demand that the community change to include them" (19).

"Shame and fear are personal burdens, but if these tales are told, we can demonstrate how the personal is indeed the political" (22).

Normal/Abnormal rhetoric is often used to describe "absolute categories" that maintains their "certainty by association with empiricism, and they suffer from empiricism's reductive and simplifying tendencies" (24).

"Language that conveys passivity and victimization reinforces certain stereotypes when applied to disabled people. Some of the stereotypes that are particularly entrenched are that people with disabilities are more dependent, childlike, passive, and miserable and are less competant then people who do not have disabilities" (25).

"disabled people are rarely depicted on television, in film, or in fiction as being in control of their own lives--in charge or actively seeking out and obtaining what they want and need. More often, disabled people are depicted as pained by their fate or, if happy, it is through personal triumph over their adversity. The adversity is not depicted as lack of opportunity, discrimination, institutionalization, and ostracism; it is the personal burden of their own body or means of functioning" (25).

"Victim" rhetoric casts the disability as the "active agent perpetuating an agressive act on a vulnerable, helpless 'victim'" (25). Rhetoric of "victim" markedly different when used to describe those "suffering from" or "afflicted with" HIV. Distinction is then made b/t "innocent" victims of blood transfusions and "complicit" victims of HIV from sexual contact and shared needles (26).

Other "victim" rhetoric: "afflict," "agonize," "excruciate," "rack," "torment," "torture" (26). Distinction b/t "living with" and "dying from" a disease. "Wheelchair bound" or "confined to a wheelchair" (27). "Invalid"

"Disabled people, who have often spent a great deal of time as patients, discuss the ways that we have been socialized in the medical culture to be compliant, and that has often undermined our ability to challenge authority or to function autonomously" (29).

the verb disable means "to deprive of capability or effectiveness" (30).

Saturday, June 9, 2007

Sections of the dissertation?

Possible discussions/sections for the dissertation?

  • Problem of Identifying Autism--
    • "defining" autism, maybe a look through Burke's pentad w/ Kanner, Asperger, and today (Kirby? moving "autism" out of schizophrenia in DSM),
    • semiotics/linguistics/discursive influence on autism as disability--or the lack of discursive/semiotic/linguistic construction in autistics
    • high-low functioning distinction?
    • metaphors describing autism?
  • Identifying the "Gaze" of Autism--
    • see blog post below
    • discussion on high-functioning and low-functioning as it relates to an autistic's ability to disclose
  • Identifying the "Suprahuman"--
    • including discussion on autism and God, devil (presenting in November at SAMLA)
    • savants' "superhuman" abilities
  • Identifying the Commodities of/ Corporatization (?) autism-- (submit proposal to RSA for presentation in May? CFP on "responsibilities of rhetoric" so would fit well)
    • white, upper-class condition,
    • autism and productivity,
    • autism and expensive treatments, therapies,
    • autism and multi-million dollar non-profits and rhetoric of soliciting donations (all connecting to identifying autism and agency of parent and autistics to "cure" or treat autism)
Hmm... and within each section I would use Western media to support my claims (television, film, news, internet...) I keep coming back in my readings to identification and agency...

Starting on the prospectus...

Just some thoughts I've started getting together--it's pretty vague and sketchy still:

Since the DSM-IV first defined autism and autism spectrum disorders as pervasive developmental disorders separate from schizophrenia and childhood emotional disturbances in 1990, scholars in medicine, biology, chemistry, genetics, psychiatry, psychology, education, and environmental science have published thousands of books, journal articles, and research studies in an attempt to better understand this neurological condition. A simple search in any medical database at any university library on "autism" will pull up tens of thousands of entries.

However, a search on the "representation" of autism in the Humanities will yield only a handful of books and journal articles; in fact, many notable works in Disability Studies do not even mention autism. Discussions on mental illness often focus primarily on schizophrenia and bi-polar disorder. For instance, in Lauri E. Klobas' book Disability Drama in Television and Film, she cites thousands of instances when mentally and physically disabled characters have appeared in Western television programs and films; however, she does not cite one movie or television program with an autistic character, although autistic characters have appeared in more than fifty-five feature films and made-for-television movies, as noted by Stuart Murray in his article "Hollywood and the Fascination with Autism." Likewise, recent publications by James C. Wilson and Cynthia Lewinsky-Wilson (Embodied Rhetorics: Disability in Language and Culture (2001)) and Sharon L. Snyder and Brenda Jo Bruggemann (Disability Studies: Enabling the Humanities (2002)) do not even mention, much less discuss, the rhetoric or representation of autism.

While the recent media and public attention on autism have increased awareness and interest in this neurological condition, scholars in the Humanities have yet to discuss this matter as extensively as scholars in medicine and education have. More recently, two notable works on the construction of autism in Western discourses by Majia Nadesan (Constructing Autism (2005)) and Roy Grinker (Unstrange Minds (2007)) have been published; however, neither works examine the rhetoric of the representation and identification of autism, particularly in Western media.

While the recent media and public attention on autism have increased awareness and interest in this neurological condition, scholars in the Humanities have yet to discuss this matter as extensively as scholars in medicine and education have. Therefore, my dissertation will examine the rhetoric of agency and identification of autism spectrum disorders as reflected in Western media, including films with autistic characters or characters who exhibit autistic behaviors, youtube videos, and autism-related blogs. Through films, online videos, and online journals, autistic individuals and parents of autistic children are able to share their experiences with various treatments and news publications. [This part needs alot of work. Need to be much more specific.]

Little doubt exists as to the influence of films and television on our perceptions of society; our "visual culture" shapes both how we act toward each other and how we respond to those actions. The perceptions of the physically and mentally disabled are significantly relevant since such perceptions in turn shape how society, as a whole, treats, responds to, and cares for those who are primarily considered "inferior," "broken," or an "other" in society. Likewise, new media online video servers, such as youtube, and online journals allow autistic individuals and parents of autistic children to share their experiences with various treatments and their responses to and concerns regarding news publications. Therefore, my dissertation will examine the representation of autism spectrum disorders in Western media--films, television programming, youtube, and online journals--in order to illustrate how Western media both reflects society's anxieties regarding developmental (and invisible) disabilities and how those anxieties manifest in Western diagnosis, treatment, and care for individual with autism spectrum disorders.

As W. J. T. Messaris notes in his book Picture Theory, the importance and reliance on the visual has led to the current "pictorial turn"--a turn in which humans rely on images, rather than the text, to understand the world around them. This "pictorial turn" is no less important in regard to media and disability studies. The ways in which the disabled are "gazed" upon by the camera and online reflects non-disabled anxieties and concerns regarding the disabled--both of which shape how the non-disabled and the disabled, themselves, respond to those with disabilities when they are no longer visually represented in the media. Still, this concern for "visual culture" is particularly relevant in regard to disability studies because "visualizing" is often a passive activity--images flood us in all facets of our lives and we, in turn, "receive" them. We use those images to understand and construct the world around us. Humans, in turn, use what those images to as a means of signification--to identify, define, categorize, and interpret the world around us. Images allow humans to identify what an object is in respect to what it is not; in other words, images of the color "red" enable viewers to distinguish it from the color "blue." Likewise, humans use images to categorize what is "normal" from "abnormal"--wearing tennis shoes on our feet is "normal" while wearing them on our hands is "abnormal."

However, the ability of images in our visual culture to distinguish what is considered "normal" from "abnormal" has profound consequences when applied to the human body. Images of "health" and "vitality" become synonymous with "normal" while images of "difference" and "disfigurement" become analogous with "abnormality." Consequently, the "abnormal" body is separated, distinguished, and isolated as something to fear, loathe, and pity. As such, the disabled have throughout history been marginalized because of their perceived "differences." The ever-popular circus freak show in the nineteenth century illustrates the pervasiveness of the human interest in those whose bodies and minds render them "abnormal." During the twentieth century, the "freak show" moved out of the circus tent and into television programs and feature films. Audiences have been fascinated with the gruesomeness of the "monster" in Frankenstein, the deformed Hunchback of Notre Dame, and the remarkable "genius" of Rain Man. The marginalized "others" often serve as educational fodder for cable television, as seen on such programs as Medical Incredible on TLC (The Learning Channel) and the weekly specials often featured on The Discovery Health Channel. Such programs as "The Mermaid Girl," "The Boy Whose Skin Fell Off," and "400 Pound Tumor" have resurrected the circus freak show under the auspices of "education," "health," and "learning."

While those with visible disabilities are often "gazed" upon as "abnormal," those with invisible disabilities pose different concerns; namely, how do we "gaze" upon someone whose "abnormality" is invisible to the naked eye? What complexities exist for the disabled with their "abnormalities" or "differences" are not visible in this increasingly visual culture? Additionally, how does the visually-dependent media (specifically, the medium of television, film, and the internet) construct the images of those with invisible disabilities when their disabilities are not visible? The visualization and marginalization of those with invisible disabilities, especially autism, are represented and reinforced in Western media and in turn shape how those with invisible disabilities are treated (and not treated) by society. As such, these issues are just a few of the concerns I will address in my dissertation.

[After reading these last 4 paragraphs, I wonder if a major "section" (chapters?) of my dissertation will involve the "gaze" of autism. Particularly who is gazing? How does the "gaze" of those with autism, perhaps as reflected in
Send in the Idiots, Mozart and the Whale, Born on a Blue Day, and other autism narratives, differ from the gaze of observers--parent's narratives, television, film, blogs? This conversation could include discussions on disclosure, particularly relevant for online electronic communities in blogs and online discussion groups.

I keep seeing two main discussions in my readings--identification and agency. Perhaps the meta-terms that connect the dissertation as a whole together? Then, I think looking at the "gaze" of autism would connect well within the larger discussion of identification and agency. Or, maybe not...]

"People with 'Learning Difficulties'"... Corker, Mairian and Tom Shakespeare, eds. Disability/Postmodernity: Embodying Disability Theory. New York: Continuum. 2002.

I'm working today and tomorrow on the prospectus and reading around. Something of interest from Dan Goodley and Mark Rapley's article "People with 'Learning Difficulties'" that would be relevant for a discussion on the construction of autism based on discursive and linguistic abilities. Specifically, Goodley and Rapley argue that "assumptions and ways of talking about disability [...] are crucial to the production of persons as incompetent. Both approaches point to the political consequences of these ways of talking: to the silencing of people with intellectual disabilities. Both approaches draw our attention to disability as a socially produced phenomenon in a social world, and social worlds, we argue, are worlds that can be changed" (127).

Also relevant: "We challenge both the modernist construction of 'learning difficulties' as naturalized impairment, and also demonstrate that phenomena frequently understood as aspects of social interaction" (127).

Goodley and Rapley's article focuses primarily those with 'learning difficulties' tendencies to acquiesce. Specifically, Goodley and Rapley challenge how the tendency to acquiesce, which is one significant "marker" or characteristic of the mentally challenged that is often used to justify how the "utterances of people with 'intellectual disabilities' are not to be trusted as veridical reports of their actions, beliefs, or feeling states" (128), is based on faulty methodological practices that assumed to be neutral or objective. Goodley and Rapley note that just as "language talks to the world into being, discursive psychology insists that (research) 'methods' are always and already 'theory' in disguise (128).

An interesting point for a discussion on the social construction of autism: "Discursive psychology [...] grants prior status to language : without the prior existence of language, such 'psychological' things 'intellectual (dis)abilities', 'syndromes' or acquiescence 'biases' can, quiet literally, not sensibly be talked of" (128). While G & R focus primarily on discursive analysis of transcriptions, I think G & R's statement illustrates well how rhetorical analysis can be applied to discussions on the "construction" of autism in the past 2 decades.

Monday, June 4, 2007

I'm still working and reading...

...away at some books that I need to read. Foucault, etc. I haven't blogged in a while but I'm still working and my dissertation is on my mind about 23.4 hours of every day.

Upward Bound is kicking my butt. So, I'll work on the prospectus on Saturday. (Sigh).

I swear: I. will. not. get. a. full. time. job. until. I. finish. my. dissertation!! I can't find 2 hours to read quietly--let alone work on my prospectus, which the rough draft is due July 1. I don't know how someone could think about getting a full time job and writing a dissertation. It's impossible.