Disability Studies Quarterly Blog
Written by Maria Susan Guarino
“I saw that my body had all sorts of little tricks, such as making my hands go limp at the crucial second, which would save it, time and again” (Plath 159).
“People are afraid to look at the human body when it’s changed, when its altered, when it doesn’t experience what we think it should experience, when it’s maimed” (Solís).
A Disabled Narrative Space in The Bell Jar
Theorists David Mitchell and Sharon Snyder assert that many literary narratives depend on disability for interest, metaphor, and rescue, among other things, but that ultimately, when a disability does not fit with the normative body, “the options for dealing with the difference that drives the story’s plot is twofold: a disability is either left behind or punished for its lack of conformity” (56). This is not empowering for disabled readers or spectators, as the message is clear: disability is not conducive to a successful narrative.
Sylvia Plath rejected this notion, taking agency, inserting the disabled self into her writing, creating a space for this figure to not necessarily thrive, but to exist. In fact, The Bell Jar’s ending is uncertain, with Esther Greenwood, the disabled protagonist, reflecting: “How did I know that someday . . . the bell jar, with its stifling distortions, wouldn’t descend again” (185)? She rejects prosthesis- Esther remains in her narrative until the end, emphasizing that she is not “healed,” per say, but she is there.
Disability and The Bell Jar
First published in the UK in 1963 and then in the US in 1971, The Bell Jar was written very shortly before Plath’s suicide. It has been regarded as semi-autobiographical, as Esther’s mental journey parallels many aspects of Plath’s before her death. There are also various references made in the novel to real events that happened during Plath’s life. In fact, the story opens with Esther’s musings on “the summer they electrocuted the Rosenburgs” (1).
There is precedent in larger Disability Studies Discourse that speak to the intersections of disability and The Bell Jar. For example, Marilyn Boyer posits Esther’s “disabled female body[mind] [as] a phenomenon brought about by a hegemonic, patriarchal system,” as opposed to a corporeal deviation or flaw (200). Applying a Kristevian lens of the abject, Boyer explores how Esther’s disablements ultimately “disturb the usual social and cultural conceptions of normalcy, which abhor difference” (203).
Because of the semi-autobiographical nature of the novel, and the existing parallels between Sylvia Plath and Esther Greenwood, there exists much conflation of the two figures. For example, when The Bell Jar was first released in the United States after Plath’s suicide, it was received as a posthumous account of her own life. A 1971 review of the book in The New York Times claimed that: “The Bell Jar is a novel about the events of Sylvia Plath’s 20th year: about how she tried to die, and how they stuck her together with glue” (Scholes 7). In that same year, Howard Moss, poetry editor of the The New Yorker, wrote: “For reasons for which we are not wholly to blame, our approach to the novel is impure; The Bell Jar is fiction that cannot escape being read in part as autobiography (73).
Maria Rovito speaks to this conflation and appropriation of Plath’s suicide and other disablements. Rovito uses madwoman theory to “interrogate ableist” and specifically diagnostic readings of Sylvia Plath, arguing that in “pathologizing [Plath] using the medical model of disability,” as someone whose “works were only possible through [her]… differences,” Plath as a figure has been unfairly (and unethically) appropriated through a lens of psychoanalysis to understand her work (317).
Body Tricks is a performance piece, aiming to create an honest, self-narrated representation of an epileptic woman’s experience without conformance to the “normative gaze” or “able-bodied perspective” (Cheu 138). Coined by Johnson Cheu in 2005, the normative gaze walks alongside the idea of the dominant male gaze in film and performance studies, with its proposed alternative perspective being a “disabled gaze.” Cheu writes: “Like feminist studies, disability studies should presume a perspective different from the dominant, in this case, able-bodied, perspective (138).
This experience is also not punished for the lack of hegemonic filter or medical cure. By “punished,” I mean that the disability is not prosthesisized- the epilepsy is not cured medically or removed from the narrative. In both my narrative and Plath’s narrative, the disabilities we write are allowed to exist- to remain in the narrative.
Because I, the disabled woman, was active in all elements of production of this video, I am enabled both by the narrative space that Plath has forged, as well as the ability to utilize multimedia effects including live drawings, musical compositions, a Capella song, and dynamic text to “interfere in the violations of the “medical stare” at [the epileptic body]” (Kuppers 148). My hope is that this video essay will encourage spectators to question the stigmatization of seizures and disability, as well as dominant understandings of epileptic activity.
Seizures as Performances
Tonic clonic epileptic seizures can be considered performances, intentional or not- the seizing person converting into what disabled scholar and performer Catherine Cole calls: a “performer in a script [they] did not write” (qtd in Sandhal & Auslander 4). In choosing someone to intentionally render these performances in an artistic way, I needed to feel as safe as possible. I decided to ask one of the artists from a local figure drawing class I had been posing in for the past few years. It felt important to me that the artist I work with have at least some familiarity with my body and form, and yet also little to no social attachment to it.
A strange thing happens in figure drawing sessions- once the sessions begin, the artists focus so intently on different parts of the model’s body, yet also seem to see none of it at all. I once ran into one of my favorite artists at a coffee shop, someone who I felt captured me so beautifully on paper, and I said hello. He didn’t even recognize me. Then, I tilted my neck back awkwardly and bent my wrist, in the way I had often posed for him. His eyes lit up and he said, “Yes! You’re the woman with the wonderful wrists!”
This relationship was important to me, because the goal of Body Tricks was not to “create ‘positive images of [epilepsy]’” but instead to “work[…] with images toward a transcendence of imagery that address[…] the audience physically” (Kuppers 153). How could I do this, maintaining control of my gaze, my standpoint, and my social agency?
I asked Dominique Thiébaut, a local artist and scholar who had just started experimenting with digital drawings. Together, we conceptualized moving drawings and paintings that I term “epileptic gesture poses”- a series of gesture drawings and paintings that represented epileptic performances. We collaborated through in-person posing, using photos of me as a young girl, and revising sketches remotely.
In our creative process, we confronted two challenges. First, Dominique “did not want to draw [me] in ugly poses” (2020). For this reason, it was important that I stay an active member of the collaboration throughout the entire process honoring the disabled gaze that I aimed to create.
The second challenge presented a conflation of the intentional and non-intentional performance of epilepsy. During one of our posing sessions, I needed to leave early due to the onset of a tonic-clonic seizure. Though I had spoken with Dominique about how to care for me in the event of a tonic-clonic seizure, this event felt stressful because the performance was now not intentional. Dominique and I had been facilitating performances of epilepsy together in shared creative spaces, but this seizure made me feel “aware of [my] social status of [my] specific physicality, and [I did] not wish to expose [myself] to stressful situations that [could] induce and acerbate these ‘symptoms,’”- to perform in this way (Kuppers 153).
Seizures as Performative
A goal of Body Tricks is to reveal the performativity of epilepsy as understood through the normative gaze. To emphasize the significance of the performative aspect of this piece, I turn to performances of “stage-managed hysteria” facilitated by nureologist and theorist Jean-Martin Charcot in the late 1800s (Kuppers 148). No longer listed in the Diagnostic and Statistic Manual of Mental Disorders, hysteria was understood by Charcot to be a neurological disorder that mostly afflicted women. His peer, Sigmund Freud believed it to be psychological, “introduc[ing] the concept of hysterical conversion” (North 498).
A significant part of Charcot’s attempt to validate hysteria as a “genuine” medical condition was through performance- live on a “medical stage” (Kuppers 153) as well as photographs (Showalter 71, Stephenson 28). Though Charcot’s goal was to medically diagnose his patients with hysteria, it was also to stage a visible show for onlookers. Two things are significant about his performance methods: performing for the normative gaze as well as his goal of validating hysteria corporeally- without visible physical symptoms (visualized through the gaze of the onlooker) the condition remained unreal.
These physical symptoms, which came to be understood as hysterical symptoms, now overwhelm screens and theater productions today. The performed hysterical woman is physically in distress. Kuppers concludes from this: “Staging and theatricality impinge on all of these examples [of validated hysteria]: ‘truth’ is undermined through the mode of representation, and spaces for difference open up” (152).
The same trend can be observed of epileptic representations in film and theater (Kerson et al.; Olivares; Stirling). However, epilepsy is not only large jerks, drooling, tongue-biting, and eye-rolling. The majority of identified seizure types actually do not include jerks or even loss of consciousness, and many types of seizures go unnoticed by anyone except for the person experiencing them (Kiriakopoulos and O Shafer).
Here we can apply Judith Butler’s argument for the performative nature of gender to disability. She writes of gender performance:
Because there is neither an ‘essence’ that gender expresses or externalizes nor an objective ideal to which gender aspires; because gender is not a fact, the various acts of gender creates the idea of gender, and without those acts, there would be no gender at all. Gender is thus, a construction that regularly conceals its genesis.
This genesis is not visibly corporeal or tied to the epileptic’s bodily expressions, but rather performative. Instead, my body becomes disabled only “through a series of acts which are renewed, revised, and consolidated” through normative, hegemonic societal constructions (274).
Epilepsy, in fact, is prosthesisized through a medical gaze of comfort. If the epileptic’s physical body is not visually disrupting others, then it is not considered disabled. That does not mean that it is not, however. Many types of seizures cause symptoms such as fatigue, confusion, chronic crying, anxiety, and vocal outbursts, to name a few (Kiriakopoulos and O Shafer). I do list these symptoms in an attempt to medicalize epilepsy. The goal is also not to argue that epilepsy is not disabling. On the contrary, I return to the question of how to perform my epileptic experience without recreating a Charcot-like corporeal “show” for spectators through a normative gaze.
By performing, through the disabled gaze, an experience of epilepsy that encompasses more than an onlooker watching a twitching body, then perhaps I can help the able-bodied spectator to question the social construct that epilepsy is understood to be. Perhaps, through the disabled gaze, spectators will understand that disability is a constructed reality, and not an inherent, natural state.
Body Tricks Part 1: Epilepsy through the Normative Gaze
The first half of the essay (00:00- 03:59) represents epilepsy and seizure activity as commonly perceived and understood through a dominant, normative standpoint. The movement and colors are violent, and the quotes from The Bell Jar are Esther’s and other characters’ reflections of confusion, frustration, and pessimism. The recorded conversation with my neurologist (00:24- 00:52) conveys a need to treat disability through medication- prioritizing visible seizure control over quality of life (ex: “stay[ing] awake”). Until the last image of the first half, the face in each moving image is either hidden, turned, or covered. The last image (03:38- 03:59) depicts my face with a growing injury on the mouth- representing both the physical injuries I have acquired to my lips and teeth from seizure activity, as well as the silencing of the disabled voice.
Here I adopt Samantha Schalk’s proposal of disability in narrative as an embodiment of both “a metaphor for… oppression and a reference to… the material prevalence of disability (56)”. Drawing on Schalk, I explore this metaphorical silencing in relation to gendered oppression- the legitimacy taken away from me as a woman when I was not able to smile for weeks after my mouth was injured, and how this affected my interactions and ability to produce/achieve. Materially, my teeth may have been gone and my lips were scarred, but as a woman in a patriarchal society, I felt that I no longer possessed a voice that would be validated or heard until my mouth was accepted through the normative gaze.
Body Tricks Part 2: Epilepsy Through the Disabled Gaze
The second half of the essay (03:59- 08:14) switches to my recollection of experiencing my first tonic-clonic seizure- urging the spectator to adopt a disabled gaze. I was ten years old, singing in choir. Here, there is a shift from the music being played to the singular I voice of me singing, and though the seizure activity continues, conflict is integrated through more colors and tones. Though the lens of this part is that of the tonic-clonic seizure, I aim to explore “both mental and somatic” experiences of my various types of epilepsy (tonic-clonic, absence, myoclonic jerks, focal aware seizures)- which though still jarring, are also exciting, calming, and sensational (Anzaldúa, now let us shift 119). The images conveyed are now switching from either my face confronting the spectator and depictions of seizure activities through my disabled gaze. The quotes switch to more defiant- times of Esther denying prosthesis within her treatment and her narrative, insisting that her disability is a part of her.
Alana’s Silence: A Note on Production and Disabled Performers
As the second half of the essay switches to a first-person account of epilepsy, it also changes several modes of production. First, the music changes from my friend and composer Ian Bauer’s musical composition in the first half to me singing. This is significant for two reasons. As noted in the previous section, it is a switch to the singular I voice. Also, I originally solicited the work of my sister, Alana Guarino, who is a gifted jazz flutist and very familiar with The Bell Jar. She is also disabled and wanted to be included in this piece. I felt that her music and “privilege[ing] the voice[…] of a disabled wom[a]n [musician]” were integral to the narrative space of Body Tricks (Rovito 317).
However, she ultimately could not produce a composition that worked for this piece, at this time. I write this here because Alana contributed to this process and her labor ultimately is not heard in the film, but should be noted. Writing of disability, performance, and silence, Kuppers addresses this, writing that when working with disabled performers, she realized that:
the connection between the physical and the representational, their deep mutual implication. Many of the performers’ physical experiences mirrored their silencing in, and exclusion from representation. Some had no space for themselves, their bodies, their movements in the social and physical environment. (153)
The other shift from the first half of the essay to the second was the initial editing process itself. The first half was initially edited by and co-produced with my friend and videographer, Noah Luke. Noah taught me how to edit video using an editing software I had very little knowledge of. In my transition to the second half of the film, I felt the need to edit myself, though my process was very slow and inexperienced. When working with Noah in the first half, he was helpful, kind, and very patient. As he said during a panel of our experience, I “had a lot of bad ideas” (2020). However, to truly adopt the disabled gaze, it felt important to me that the music, the editing, the writing, and the point of view come from my disabled self.
In working with my collaborators- Dominique, Noah, Alana, and Ian, I felt comfortable and safe knowing that I worked with people who acted as intentional friends and allies to me as a disabled woman, and to my goal of facilitating a disabled narrative space. Throughout all stages of production, I was feeling very aware of how an epileptic woman looks through the normative gaze, and I was “not wish[ing] to be seen in ways that allow my bod[y] to be read for ‘symptoms’ of [epilepsy]” (Kuppers 153).
Conclusion… and more silence.
In addition to understanding epilepsy as performative, I hope that spectators become aware of their own normative gaze, which assumes disability through “[my] visible evidence of difference” (Kuppers 149). Now, because there are no common representations of epilepsy to depend on, and disability has been redefined to something that is not “grotesque” or “scary,” per say- How can we “legitimize” what I am experiencing as disability? Since my body is no longer the “readable symptom,” my hope is that we are forced to acknowledge not only the social construction of disability, but also our reliance on visible and auditory cues to determine ability (Kuppers 15).
Though the video could be said to follow a progression, I have also attempted to stay away from a narrative that feels too “comfortable.” Much of the singing overlaps and without resolving a melody, and towards the end especially, as the movement becomes slower, I insert jarring moments to remind the spectator that the disabled gaze does not require a narrative- disability does not require a cure. Additionally, I play with disjointed movement of Bell Jar text. Several spectators, for example, commented that “snow” (06:35-06:41) should descend in order, and more similarly to a falling snowflake effect.
Ending with Esther’s quote, which does reject prosthesis, could still imply closure. For this reason, I also end with 37 seconds of silence (7:38-8:15), 19 seconds which sit with: “They were my landscape” (07:56-08:15). I found a power in silence here, specifically during the gallery showing of this video. I noticed that spectators were ready to get up, but since the video was still playing, seemed unable to leave their seats- I believe that this forced discomfort helped the spectator to embody the silence and (non)voice of the disabled gaze.
The goal of this video is not to romanticize epilepsy or disability through the beauty of the images or music, but rather to explore disability through a space enabled and controlled by my point of view. I aim to create a narrative space, like Esther’s, in which the disabled object (me) is transformed into the subject through performativity, and where this transformation does not necessarily equate healing or wellbeing. In this space, the disabled woman defies ableist binaries of “well” and “unwell,” “healthy” or “unhealthy,” and instead, is able to thrive while being unwell- to be in a borderland space of sorts, without a need to leave (Anzaldúa, Borderlands).
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Thiébaut, Dominique. Personal Interview. 14 Feb. 2020.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
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