Inventing the Self

Disabled Representations, TED Talks, More

October 21st, 2013 by John Giunta · 5 Comments

Disability Studies interests me for two related reasons: First off, there is a kind of large-scale pop culture awareness of a myriad of serious physical/mental disabilities, as displayed for wide audiences in fiction and nonfiction, television and film, and yet, secondly, there seems to be a disparity in the proliferation of representations of various disabilities and popular (mis)understanding of how disability is constructed and propagated. This seems crucial to understanding the Self, as D. Studies seeks to do away with the “normate” us versus the “damaged” or “different” them. The history of disabled representations in culture shows the disabled as abject, outside, villainous, monstrous, or at home only in freak show; the value of these representations being varied but generally amounting to something like “aren’t you glad you ain’t them?” But if we’re reading Garland-Thompson and her definition of the “normate”, which takes on a socio-economical context as well as relying on a model sound body/mind, it becomes clear that, like the nuclear family, the popular conception of the normate is an historically impossible standard that no one truly fits. Instead, various stigmas form hierarchies of abled or disabled bodies that rely on such qualifiers as race, age, sex, status, health, attractiveness, and more. And yet the disabled figure, in all his/her forms, comes to be expressed in one of two different characters – the character for whom disability is the defining characteristic, action, or quality, and who generally follows a kind of dis-normative arc similar to Matt’s conception of a homonarrative, or a token disabled character in a story otherwise populated with “normal” characters who is meant to teach the “normal” characters and, by extension, the “normal” audience, a lesson. These character archetypes play such a dominant role in our understanding of ourselves and difference that it’s hard to move away from, as opinions and expectations in class would seem to suggest. How do we talk about physical or mental disability when we do not understand it, or when or experiences are radically different? (parenthetical sidebar, would Damasio rely on the ever-important binary of “physical/mental” when referring to disability? Or would the placement of mental disabilities in the region of consciousness, and therefore the brain, make them akin to physical disabilities? Again, to what extent does social or emotional trauma impact Damasio’s sense of the brain and consciousness?)

So it’s fitting that Hornstein’s book researches the various organizations committed to building and assisting the Hearing Voices community. Obviously, community is an important quality to the spread of understanding a traditionally ostracizing, stigmatizing condition. Although she (and many other writers we’ve read so far, I’ve noted) strays from using the term “empathy”, the success of the Hearing Voices community hinges on the possibility of a shared experience – a deeper level of camaraderie and connection than the characteristically cold, detached, “normate” status-quo-enforcing medical-pharmaceutical industry (exaggeration for dramatic effect) achieves. And while I wonder about how potentially divisive the formation of differing camps of shared experiences that cannot have an easy cross-over can be, it is obviously helpful, as evidenced in Hornstein’s numerous examples and the TED talk with Eleanor Longden. We discussed how mainstreaming functional examples of people with various diseases (a term they wouldn’t approve of) lessens the significance of people who are really suffering (again, this is tricky), I think the spreading of their stories and the methods that help them achieve this level of functionality can possibly prevent the variegated forces that can result in the less-functional cases of greater extremes from happening in the first place. As these real-life examples become more relevant to a pop-consciousness – similar to the spread of TED talks – the stigmatized, generic, standard forms for disabled representation will have less a grip upon collective imaginations. I’ve made note of a problem with TED talks before, as their easily-digestible messages become widely misinterpreted and misapplied, and while this same thing happens with more palatable depictions of people with disabilities, I think the acceptable-ness of the various examples of people living with Heard Voices (for example) is derived from their ability to cope, and this ability instilled through a nonconventional, possible-fringe method that could benefit from a wider audience.

One way in which this happens is with a shift in vocabulary. Hornstein notes how doctors and nurses and other facilitators involved with these various groups spend a lot of effort in changing the terms typically used when discussing disability, including doing away with such labels as “victim” and “sufferer”  and other diagnoses altogether, and Hornstein maps the importance of this move. I think we had, at some point in this class, discussed the vagueness of language, especially in the sciences, but here we see that a high level of specificity is achievable and actually conducive to a better understanding of experience. The point of Disabilities Studies, in some kind of utopian future, is after all to actually undo itself, as greater connectivity and understanding actually spell the end of the concept of “disability”. Also, I think that’s pretty much the goal of the X-Men comics since their inception, and while I won’t wast anybody’s time going on and on about comic book mutants, I’d argue the X-men are a pretty reputable pop culture conduit for positive understandings of stigma and disability that doesn’t, necessarily, conform to my above-outlined disabled character types… But maybe not, ’tis just my admittedly biased opinion.

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5 responses so far ↓

  • Shona Mari Sapphire // Oct 21st 2013 at 6:13 pm

    Response to John Guinta:

    This is an interesting question you pose about how Damasio (as purveyor of neuroscientific methodology), might assign value to social or cultural influences on the consciousness or self, as it pertains to a mentally disordered person. Perhaps the being as a biological universe of embodied consciousness would be assessed as just that- a being with a brain influenced by lesions or chemical delinquencies which cause failure to function at optimal levels. The degree to which social, lived experience (trauma), enters into Damasio’s assertions on optimally functioning brains/selves/consciousnesses seems to be less from a causal or constructionist perspective and more from the neurobiological, homeostatic ability level. One way of perceiving mental illness from this standpoint might be as a diminished homeostatic, and “sociohomeostatic” ability to sustain life functions both internally as an organism and outwardly in relation to others.

    De-stigmatizing the existential reality of mentally ill persons, such as those who hear voices, for a wider audience, does seem a possible outcome of the collective movement, documented by Hornstein. The work of collecting phenomenological data on the multifarious experiences of voice hearers, from their distinctive narrative positions, to extract meaning which is applicable on a more generalized scale seems a necessary step in the forward progression of the mental health field; if social and personal healing and sustainability is of any priority. As Hornstein notes the accomplishment of Dr. Rufus, the former schizophrenic patient turned psychiatrist: “Mental health professionals may think they’r the only ones capable of making sense of psychological experience, but Rufus May gives new meaning to the idea of patients taking over the asylum” (17). As a complete novice on comic books whether in text or film version, I still think I could see Rufus as a superhero character in the cast of X-Men.Hearing and communicating with voices in a meaningful way could probably come in handy at some point.

  • Jason Scaglione // Oct 22nd 2013 at 4:53 pm

    While mainstream cultural products do annoyingly portray and therefore lessen the significance of people actually living with disability, I’d also reiterate the importance of stories of disability that attract a mainstream audience.

    Such products, I mentioned in class last week, may facilitate something like what the philosopher Richard Rorty calls “sentimental education.” If we are to realize a global society built on ideas of inalienable human rights, we need non-rational access to the humanity of others—possibly thru a proliferation of stories that communicate the humanity of those whom we would not intimately encounter otherwise (i.e. voice hearers).

    The net effect would ideally be as you describe: absent conditions that in some cases precipitate a worsening (e.g. cultural isolation, improper medication, etc.), less severe outcomes in general might be expected.

  • Gabriel R. Seijo // Oct 22nd 2013 at 7:39 pm

    I feel very much in agreement with your recognition of a need for specificity when dealing with mental health. It definitely could be hard to put into words something as ambiguous as the different ways that hearing voices can be interpreted by individuals, but in no way does it help to try to fix all these experiences into one or two words. Clear conceptualization definitely makes the communication between academics easier, but evidently doesn’t benefit those in need of the academic progress.

  • John Giunta // Oct 22nd 2013 at 11:46 pm

    Jason – I’d definitely be interested in hearing/reading more about “sentimental education”, as it’s a concept I’m wholly unaware of – can you recommend any specific books or articles?

  • Jason Scaglione // Oct 23rd 2013 at 4:04 pm

    Certainly John:

    I have scans out of an anthology that include an essay by Rorty entitled Human Rights, Rationality, and Sentimentality. The idea gets floated there; I’m not sure it has taken a more explicit form. I have opened a link to the PDF on my Dropbox here. The scans also include another essay by Jean-Francois Lyotard on The Other’s Rights.

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