There is no normal. "Normalcy" assembles itself into a category only in contrast to the diagnosis of disability. A body, any body, participates in the infinite variability of human being until it is diagnosed as different. "Stigma arises at the moment of diagnosis," as Trevor Blank and Andrea Kitta write in their editors' introduction to Diagnosing Folklore (3). Who does the diagnosing? Not, they contend, just medical practitioners or just ordinary folk. Folklorists also diagnose difference. Blank and Kitta undertake to diagnose folklore's own disorder: its participation in a category it is concerned to dismantle, the category of disability.
Stigma is normalcy's "brooding inverse" (3). Unlike its antithesis, stigma is contaminating, staining not only the body of the person on whom it is inscribed but also the language in which it is described with meaning beyond the difference disability names. This is Diane Goldstein's and Amy Shuman's "stigmatized vernacular." Its counter is Shuman's "strategic romanticism," in which the disabled body is figured as at once beneath the ordinary and beyond the ordinary. As Blank and Kitta recognize, the disabled body hovers between invisibility and hypervisibility (Goldstein and Shuman 2012: 115, 121), at once drawn into view and hidden from view by the practices with which we seek to honor its humanness.
This dialogic tension between the less-than-human and the more-than-human troubles the process of speaking-for. The ventriloquist speaks for the dummy as the folklorist speaks for the disabled. Ventriloquism is folklore's dilemma. Speaking-for is designed to give voice to those whose voices have been stolen but it also steals their voices. Speaking-for, according to Donna Haraway, makes groups understood to be unable to speak for themselves "permanently speechless, forever requiring the services of a ventriloquist" (1992: 312). It makes them unspeakable.
At issue in this collection of essays is how folklorists get out of (or into) this unspeakability.
One solution to the problem of speaking-for is Elaine Lawless's "reciprocal ethnography," in which the ethnographer participates in the practices she investigates, and the practitioners participate in the writings she produces. Under investigation in this particular writing are women who practice alternative healing. The healers let Lawless observe them only if she learned their practices. This results in a sort of autoethnography or creative nonfiction in which it is never clear how healing is supposed to work. The healers say, "Belief and practice are one" (145). If the practitioner remains agnostic about the practice, is it an instance of the practice it enacts?
Even in instances like Kristiana Willsey's veteran's war stories or Darcy Holtgrave's bipolar vloggers, in which the selves being presented present themselves in stories, the stories are themselves fitted into the ethnographer's argument. In telling other people's stories, do we give others voice or do we re-voice them? Their voices are captive voices; ours are authoritative voices, carving out a space in our own discourse into which to fit the other's discourse, carefully contained, strategically deployed, under our control. Do we speak for them? Ought we?
Willsey examines the curious case of veterans who refuse to tell war stories. Veterans are in a double bind: to be read as fully human, they must have been damaged by war, but to be damaged by war makes them less-than-human in civilian life. The veterans' solution is narrative fragments but these, too, can be regarded as evidence of the disorder they deny: PTSD. Untellable events can appear as disabled tellers. Willsey's undertaking is to render narrative fragments acts of resistance. Can she--or they--bring it off?
By contrast, Amy Shuman argues that to regard as flawed the narrative fragments that an intellectually disabled storyteller produces misses the resourcefulness, wit, and cleverness he employs to recruit co-narrators to make moves he cannot. All narration is co-narration. Folklorists often attribute the role of telling to one participant and hearing to the other, but both roles can be distributed over both participants. "Neurodiversity" invites us to investigate multiple competencies rather than incompetent tellings.
Instead of concealing their disability, Holtgrave's vloggers perform themselves publically as bipolar. They invest themselves in their social worlds via what Blank calls "virtual corporealities." To dismantle the stigmatization that attaches to their disorder, bipolar vloggers can curate their virtual body's presentation of self, but curation, Holtgrave contends, raises suspicions of either exhibitionism or inauthenticity. Performance converts the problem of dark secrets into the problem of discredited selves, in Erving Goffman's term. As he points out, we all design presentations of self for everyday life. Vlogging makes more apparent the contrivances behind our ordinariness and the ordinariness of their contrivances.
Unlike imperceptible disabilities like bipolar disorder, perceptible disabilities cannot be kept dark. Their possessors are discredited in advance. Intellectually disabled persons, for instance, can resist discreditation only by severing the stigma from the disability. This is the project of the Special Olympics. Olivia Caldeira's work turns on the problem of peculiarity: all bodies have quirks. To select bodies for their quirks and then pit them against each other in spite of them raises the question: are we doing them any favors? Does the Special Olympics make intellectually disabled athletes mascots of themselves, as Caldeira puts it, or does it humanize their disability?
Cultures press imperceptible disabilities toward perceptibility. We would prefer to make the stigma of disability a visible mark, as it was for the ancient Greeks, who originated the word. The mark then both warrants the prejudice attached to the disability and identifies the persons toward whom it ought to be directed. In the urban legends Diane Goldstein studies, mad men are monstrous. Mental disturbance manifests itself as physical difference; madness shows up in both bodily deformities and grotesque acts. The idea that we can identify the mad by the stigmata on their bodies or the monstrousness of their acts assures that we are safe in what Goldstein alludes to as our smug normalcy. But mysteriously, mad women are not monsters; they are victims. They go insane as the consequence of monstrous acts. Is this because, as Goldstein suggests, we cannot bear our mothers to be mad or because we cannot bear women to be ugly?
The Javanese traditionally regard children on the autism spectrum as crazy, violent, possessed, naughty, stupid, or deaf-mute. Annie Tucker argues that for families who resist these characterizations of their children, the Euro-American diagnosis of autism spectrum disorder (ASD) can come as a relief. The disability is lifted away from the cultural biases that attach to its local characterizations. But the foreign diagnosis is incongruent with Javanese understandings of bodies and persons. Both the diagnosis and such interventions as behavioral therapy, which works on a punishment/reward system, or stringent diet, which eliminates supposed allergenic foods, injure the Javanese conception of both health and sociability. Javanese often view these interventions as unkindnesses. But as Tucker points out, the apparent impasse between cultural paradigms has produced a local epiphany: incorporating autists in gamelan orchestras seems to repattern emotions, sociability, cognition, and motor coordination in a culturally coherent way.
Cultures construe some disabilities as innocent and others as guilty. Innocent disabilities are never the fault of the person who has them; guilty disabilities are. Intellectual disability is in this sense innocent; diabetes is guilty. In American culture, diabetics are often blamed for their disorder. But in a strategy Sheila Bock and Kate Parker Horigan describe as "externalization," diabetics transfer fault from themselves to their culture. They present themselves as victims of a fate not of their own making. The catch, Bock and Horigan point out, is that the stigma the diabetic has exscribed from the body is reinscribed upon it by the tribal stigma, in Goffman's term, attached to the group to which the body belongs; the trick is that the disability is now innocent.
One alternative to blaming cultures for causing disabilities is recruiting cultures to their cure. Michael Owen Jones holds that the American medical system converts its failure to recognize and work with the food habits, meanings, and symbols of ethnic diabetic populations into failures of diabetic patients to adhere to dietary regimens. Hispanic diabetics, he writes, find their tastes pathologized, as if the stigma attached to the disease spilled over into the sensory system. This results in three dilemmas: 1) dietary recommendations exclude traditional Hispanic foods; 2) imposed food abstinences do not reckon with food aesthetics or food manners; and 3) abstinence is perceived in the Hispanic community as sacrifice. Hispanic communities address diabetes with a rich collection of herbal remedies, tabulated in Jones's essay. Diabetics do not invoke such traditional remedies as warrants for refusing medical ones. On the contrary, not only do these herbs offer medical research the prospect of new remedies for diabetes, but also diabetics who take herbal medicines are more likely to take prescribed medicines as well.
Cultural performances parody the perversities of medical regimes in the folk practices of medical fetishism that London Brickley investigates. Medical fetishism is a dark mirror of orthodox medical practices: physicians are always powerful; patients are always disempowered. But the performance reclaims agency by making the loss of agency that a patient undergoes in what Brickley calls the "isolated objectification" (200) of a medical procedure a choice instead of a fate: vulnerability is transmuted into intimacy. Medical examinations are the "bizarre exception" (203) to the privacy of the sexual parts in conventional life.
Players resituate the taboo feelings of "elation, eroticism, taboo transgression, fear, and arousal" they experience in response to medical interactions in a space in which they can safely explore them (209).
Each of these quirky and variegated contributors diagnoses a new complication in disability studies. I commend their diagnoses to your attention. These are prescriptions for new thinking. Take two; they're small.
Works Cited
Goffman, Erving. The Presentation of Self in Everyday Life. Garden City: Anchor, 1959.
----. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs: Prentice-Hall, 1963.
Goldstein, Diane, and Amy Shuman. "The Stigmatized Vernacular: Where Reflexivity Meets Untellability." Journal of Folklore Research 49 (2012): 179-98.
Haraway, Donna. "Promises of Monsters." In Cultural Studies, edited by Lawrence Grossberg, Cary Nelson, and Paula Treichler, 295-337. New York: Routledge, 1992.
--------
[Review length: 1682 words • Review posted on February 22, 2018]