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Katherine’s Final Exam: The Refreshingly Truthful and Informative Presentation of Autism within Keiko Tobe’s “With the Light: Raising and Autistic Child – Volume 6”

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Keiko Tobe unapologetically presents autism as one valuable point on the spectrum of human experience.  In her graphic text, With the Light: Raising and Autistic Child – Volume 6, Tobe asserts and demonstrates that autism is not a “curable disease” from which someone “suffers,” but a set of characteristics that form how an individual experiences the world.  Tobe also risks the validity of her text as a whole by offering support and information directly to her audience, not just by implying advice through her characters.  Further, this presentation of autism, in some ways atypical, in other ways emotionally truthful, roots this text firmly within the canon of disability studies in that it offers a unique, truthful, life-like gaze into the tensions and epiphanies of a family who is raising an autistic child.

Tobe creates a believable space within this family by offering the same tensions found in the real world: acceptance against rejection, understanding against ignorance, and hope against doubt.  For example, in juxtaposition against her mother-in-law, Sachiko does not try to change Hikaru’s behaviors or ignore them. Instead, Sachiko accepts Hikaru exactly the way he is, and learns to adapt to how Hikaru experiences his world instead of trying to destroy it.  Although Sachiko does occasionally wonder what life would be like if Hikaru did not have autism, this detail of the text only adds to the multi-dimensional reality of the family.  After witnessing how Sachiko and Masato have learned to adapt themselves to Hikaru’s world, the mother-in-law begins to see that Hikaru is not as “far way” as she had assumed.  These tensions are made even more believable as they are selectively resolved or reinforced in both the familial home, as well as the public setting.

On a more raw, functional level, this text even (possibly only in the English translation) offers tips and reassuring notes to parents and families caring for autistic individuals.  In any other text that takes the form of a graphic novel, this bold risk would completely break the “third wall” between the world of the characters, and the reality of the audience.  Interestingly, this detail only serves to add to the richness of this text.  One of these little notes can be seen on page 444, in a footnote, where Tobe directly addresses the reader and offers them more information about how to acquire earmuffs to help autistic individuals concentrate.  Within the genres of graphic novel and manga, it is remarkably rare for the author to purposefully break this “third wall,” and may even be seen as a flaw in some texts if done by accident; but Tobe’s purposefulness adds to the truthful functionality of this text: not only to give emotions and situations to identify with, but to also inform and act as a resource.

The view of autism found within Keiko Tobe’s With the Light is both highly realistic, and inspiringly optimistic, in that every detail of its presentation functions to form a unified text that may serve as a beacon of light within the dark, conflicted halls of autistic studies.  The family dynamics and genuine acceptance found within this text can serve as a guiding light for families of autistic individuals and those studying autistic theory.

Word count:  547

Written by Katherine Sullivan

December 8th, 2010 at 11:28 am

Robert’s Final Paper

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It’s All in Your Head? Psychology, Problems, and Progress

Disability theory, like any major theory, aims to rethink, revise, or even remove prevailing stereotypes, practices, and policies about people with disabilities. Many theorists have focused on physical disability, which is often more easily understood than cognitive disability – or at least more easily observed – by the nondisabled majority. For people with cognitive disabilities such as autism, however, the real lived existence and the theoretical conceptualization of cognitive disability is much more complicated. Facing social, cultural, and economic isolation; disabling representations; and rigid and biased diagnostic systems in psychology, people with cognitive disabilities can, however, find power and progress in self advocacy, institutional revisions, and progressive discussions.

Nowhere is the isolated and disempowered reality of cognitive disability more readily evident than in Charlotte Perkins Gilman’s “The Yellow Wallpaper.” The story’s nameless female narrator is married to John, a doctor. According to John, the narrator has “but temporary nervous depression – a slight hysterical tendency” and nothing more (Gilman). Within the story, Gilman critiques the medical model of disability through the nameless woman’s journal entries. One critique focuses on the often cold and un-empathetic mindset of clinicians. “John,” the narrator says, “does not know how much I really suffer. He knows there is no reason for me to suffer, and that satisfies him” (Gilman). Here we can see one of cognitive disability’s primary problems: while physical disability or illness is readily assessed by sight or some sort of physical or visual diagnostic, cognitive disability is difficult to visualize, assess, or even validate. Gilman’s narrator feels increasingly isolated and disempowered because, as she writes in her journal, “Nobody would believe what an effort it is to do what little I am able…to dress and entertain, and order things” (Gilman).

Another critique of the medical model is that it rarely listens to the voices and wishes of patients. In “The Yellow Wallpaper,” John tells his wife to take “phosphates or phosphites… and tonics, and journeys, and air, and exercise” and he also forbids her to do work until she is well (Gilman). Despite John’s prescriptions, the narrator does not improve. Rather, she finds John’s treatment to be ineffectual. She says, “Personally, I disagree with their [John and her brother’s] ideas. Personally, I believe that congenial work, with excitement and change, would do me good. But what is one to do?” (Gilman). Ultimately, John ignores her requests. Ultimately, the narrator goes mad and John and the medical model fail. Here we can see – or, rather, hear – how cognitive disability can silence a person’s voice more severely than a physical vocal disability might.

Gilman’s story might not seem to be an effective means to power social, political, or theoretical change for people with cognitive disabilities. However, as Rosemarie Garland-Thompson proposes in her critical essay, “Disability and Representation,” narrative representations of disability – in our case, cognitive disability in “The Yellow Wallpaper” – are important because “the way we imagine disability through images and narratives determines the shape of our material world, the distribution of resources, our relationships with one another, and our sense of ourselves.” For Garland-Thompson, then, and for people with cognitive disabilities, disabled narratives and images drive progress in the real world.

One such example of progress is in the self advocacy of people like Ari Ne’eman and Amanda Baggs, who both have diagnoses on the autism spectrum. Ne’eman, founder of ASAN, the Autism Self Advocacy Network, argues that autism and other cognitive disabilities are a natural form of human variation. This concept, neurodiversity, is a central part of ASAN’s mission to “advance the principles of the disability rights movement in the world of autism” (Autism). ASAN, in contrast to groups like Autism Speaks, supports education, self advocacy, and accommodation instead of only cures or medicalized treatments. Like many other advocacy groups, ASAN also seeks to overthrow prevailing stereotypes and inaccuracies surrounding autism. Ne’eman, in his essay, “Dueling Narratives,” argues that “the prevailing popular image of the autism spectrum” is “defined by family members of autistic children and medical professionals” (Ne’eman). These perspectives, according to Ne’eman, have “negatively impacted both parents and people on the spectrum” (Ne’eman). Returning to Garland-Thompson’s earlier argument, these “prevailing popular images” that Ne’eman criticizes have serious implications for people with disabilities and the nondisabled as well. Self advocacy and self representation, thankfully, are becoming increasingly common.

Amanda Baggs, the creator of several YouTube videos chronicling her ideas about disability and her life as an autistic person, is a prime example of self representation and self advocacy. Baggs argues in “Up in the Clouds and Down in the Valley – My Richness and Yours” that “autistic people are not a special kind of people set apart from all other people” because “oppression and injustice take depressingly similar shapes” (Baggs). Her point here is that people with autism, like people with cognitive disabilities or disabilities in general, face the same social and cultural hurdles as other disempowered groups. Using a colonial/post-colonial mindset, we might think of people with disabilities as living under the “rule” of nondisabled society. Disabled individuals have limited access to goods and services, diminished political power, and misrepresentation in media, as do subjects in a colonial environment.

What, then, created this unequal and arguably oppressive environment for people with disabilities, specifically people with cognitive disabilities? A lot of previous discussion has focused on a social or cultural root of disability stereotypes, disempowerment, and representation. There is, however, a much deeper origin. Much of the struggle and critical debate within disability theory can be traced to the basis of our conceptualization of ability/disability, which is psychological research. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV, provides the backbone for defining, diagnosing, and constructing cognitive and affective disabilities. The DSM itself is based on years of psychological research and statistical evaluations of cognitive functioning.

Reducing human beings to statistical figures, as research for the DSM does, is a complicated practice. Statistics can dehumanize people by reducing them to “normal distributions” with scores of their traits or behaviors falling within several “standard deviations” from the mean score. As David Mitchell and Sharon Snyder argue in “Cultural Locations of Disability,” for many years “disabled people have served as the relics or obscene curiosity disguised beneath the neutral veil of empirical inquiry” (193).  Statistical significance in this case can be a blessing for a researcher and a bombshell for a patient. However, research and statistics can be beneficial in that they preserve anonymity for research participants, control for bias, and provide an effective standardized method for defining, studying, and perhaps treating cognitive disabilities. Without statistical research and diagnostic manuals, treatment would not exist and it would be difficult to secure disability services or accommodations without an officially documented diagnosis.

Psychology itself, not just its research, has also had a long and morally problematic history. At one time hysteria was defined as a female disorder; the origin of hysteria is the Greek term for uterus. Gendered disorders and politically complicated ones, such as the now nonexistent diagnosis of homosexuality as a mental disorder, have not done much to benefit the image of psychology in the eyes of critical theorists. There has been and there is still an absence of a disability perspective within psychology. This could be explained by Mitchell and Snyder’s argument in “Cultural Locations of Disability,” that professions like psychology “have always imagined their commitment to disabled people as their primary value, and hearing that disabled people – particularly those in disability studies – do not necessarily share this sentiment often comes as a shock” (191-192).  Clinicians and researchers often lose sight of the humans they treat and study behind Mitchell and Snyder’s “neutral veil of empirical inquiry” (193).

There is, however, hope. To begin with, psychology has constantly evolved in response to critical evaluations and new theories.  For instance, homosexuality is no longer considered a mental disorder and the current DSM is under revision to reevaluate its definitions of several major disorders. The new DSM-V, according to its website, seeks to “develop criteria for diagnoses that not only reflect new advances in the science and conceptualization of mental disorders, but also reflect the needs of our patients” (DSM-5).  The American Psychological Association, or APA, has also sought to reduce bias in psychological publications. In the latest Publication Manual of the American Psychological Association, there are new sections for researchers and clinicians such as “Be Sensitive to Labels” that provide advice on how to avoid “condescending…patronizing and offensive” terminology and how to utilize “people-first language” (76).

With the APA currently revising its standards for research, writing, and treatment, people with cognitive disabilities can take heart. While there are still many glaring inequalities imposed by lingering unfair research and clinical standards, socio-cultural isolation, and misrepresentation, the work done by disability theorists, self advocacy groups like ASAN, and the aforementioned APA revisions is helping to create a major power shift. People with cognitive disabilities and disabilities in general, are finding voices of their own through typical and alternative media and advocating an adjustment of current and unequal practices and policies.

Works Cited

American Psychological Association. Publication Manual of the American Psychological Association. Washington: APA, 2010. Print.

Autism Self Advocacy Network. ASAN. n.d. Web. 23 November 2010. <http://www.autisticadvocacy.org/modules/smartsection/category.php?categoryid=8>.

Baggs, Amanda. “Cultural Commentary: Up In The Clouds And Down In The Valley: My Richness And Yours.” Disability Studies Quarterly 30 (2010): n. pag. Web. 24 November 2010.

“DSM-5: The Future of Psychiatric Diagnosis.” American Psychiatric Association DSM-5 Development. APA. n.d. Web. 23 November 2010. <http://www.dsm5.org/Pages/Default.aspx>.

Garland-Thompson, Rosemarie. “Disability and Representation.” Publications of the Modern Language Association of America, Vol. 120(2). PMLA. 2005. 522-527.

Gilman, Charlotte Perkins. “The Yellow Wallpaper.”  University of Virginia Library Electronic Text Center. UVA. n.d. Web. 23 November 2010.

Mitchell, David T. and Sharon L. Snyder. “Dueling Narratives: Neurotypical and Autistic Perspectives about the Autism Spectrum.” Dueling Narratives.

Ne’eman, Ari. “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum.” The Society for Critical Exchange (2007): n. pag. Web. 23 November 2010.

Eye-opening Documentary: “Autism is a World”

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This five-part documentary features a twenty-six year old woman named Sue Rubin, and follows her perspective throughout her life with autism. She explains what it is like to live with autism in a non-autistic world, attends college, experiences a transition in primary care, and interviews specialists as she tries to develop her own answer to the enduring question: What is Autism?

The entire series is a bit lengthy at about an hour total, but I highly recommend it to anyone in our class (and outside of our class) who has lingering questions about autism.

http://www.youtube.com/watch?v=47aXdOa_Tnk

Written by Katherine Sullivan

November 14th, 2010 at 11:54 am

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