Disability: Assemble Me Piece by Piece

Frida Kahlo, “Self Portrait with the Portrait of Doctor Farill”

This week our seniors have been sharing their St. Mary’s Projects with the campus community. In today’s post I share an edited version of Allison Barrett’s presentation, which uses poetry and creative non-fiction to capture the experience of living with a disability. Allison is an English-psychology double major and also winner of the English Department’s prestigious poetry award. I can only share excerpts of her powerful poems as they have been submitted for publication at various journals.

Allison says that she suffers from the following:
–Ehlers-Danlos Syndrome (a connective tissue disorder)
–Chiari Malformation (a cerebellar herniation and spine cord compression)
–Spinal Arthritis
–Enchondroma (benign bone tumor that predisposes bones to break; recently removed)
She says that she may also have Tethered Cord Syndrome, but the only way to know is by means of another neurosurgery, something she is hoping to put off for another few months.


Assemble Me Piece by Piece: Femininity, Visibility, and Disability

By Allison Barrett ’17

My St. Mary’s Project represents the intersections of femininity, disability, and visibility in the written form. The overall project contains nine poems and four essays arranged within a manuscript that is divided into three parts: Illumination, Naming, and Challenging. Each section contains works that represent the intersections of these topics.

“Illumination” highlights the stigmatizing and marginalizing that disabled women face while “Naming” articulates the social assumptions imposed upon disabled women through the process of naming. In “Challenging,” finally, poems and essays address the issues and invert expectations in an attempt to subvert the social constructs marginalizing the disabled female.

The poetry in the project details both my own experiences and that of other disabled persons. The creative nonfiction, meanwhile, conveys what I go through in the medical and social communities. I explore whether disability is actually a part of my identity or if that notion has been imposed upon me by a society that cannot accept non-neurotypical states. My identity as a woman, of course, is also important.

My project was informed by reading critical theory on the disabled experience within Western society, including Rosemary Garland-Thompson’s Extraordinary Bodies. Virginia Woolf also proved useful because of how her stream-of-consciousness depictions of each character’s thoughts in Mrs. Dalloway normalizes people who might otherwise appear mentally unstable or mentally disordered. In other words, the novel implies that a potential disability doesn’t matter: all the characters think through matters in the same way.

Meanwhile psychologist Kay Jameson, well known for her research on bipolar disorder, gave me a model for joining clinical language with lyrical depiction. I strive to normalize the clinical terminology (which removes the often intimidating power from the medical process) and introduce lyrical prose and poetry to capture the disabled experience.

In undertaking this project, I have discovered that there is no agreed upon definition of “disability.” One of my essays, “Labeled,” explores the existing confusion over definitions of the condition. For instance, consider the following:

The U.S. Department of Labor claims that “the term ‘disability’ is defined by the federal government in various ways, depending on the context. For the purposes of federal disability nondiscrimination laws … the definition of a person with a disability is typically defined as someone who (1) has a physical or mental impairment that substantially limits one or more “major life activities,” (2) has a record of such an impairment, or (3) is regarded as having such an impairment.

Clearly, the term “disability” resounds in many different ways for different people. This holds true for me. I use the technique of juxtaposing the lyric experience with excerpted materials from medical and government-based texts to showcase the discrepancies between what society deems as “disabled” and how I experience life as a “disabled” individual.

Ultimately, I have a very hard time with that term. “Disability” implies that there is some ideal “ableness” standard to which individuals with conditions such as mine chronically fail to meet. Western society has perpetuated the healthy white male physique as the body to which all should aspire. Women and minorities all immediately start below this bar. Individuals disabled through situational, developmental, or genetic means also fail to meet this standard.

As mentioned before, the first phase of my project explores the effects on the disabled individual’s identity or feelings of self-worth. In the poem “Scar,” I wanted to deliver that information in as concise and illustrative way as possible when describing my feelings as well as the feelings of those I know who have also undergone multiple surgeries. As a carmina figurata, it is a shaped poem, a poem that visually depicts what it means—a scar is split down the center of the text—so as to provide a visual in addition to the words, emphasizing how even the language is split by social perceptions of appearances. It opens as follows:

A scandal puckered   across my skin
     A scabbed split,       a crater carved into the carapace.
Scan me: read between      the lines in my body.

Other pieces are dedicated to naming that experience. “Mirror” attempts to name the positives and negatives of my experiences as a disabled woman as well as the societal stare that we are subjected to, not to mention the male gaze that women suffer through. In the following excerpt, a student I am mentoring fixates on my back brace:

We began going through his paper, and while I was explaining how some Germanic-based words are irregularly conjugated as opposed to the stringently conformist, Latin-based words, I noticed that he was not making eye contact. Instead, his stare was focused on my belt. It was not a steady stare, either; it was actively following the lines of the adjustment ropes, mapping the teeth of the velcro. He didn’t even stop staring when I stopped talking, letting my, “Does that make sense?” break into silence. Instead, my back straightened as much as it could. I wheeled my chair back fractionally, resisted crossing my arms over the belt. I was always told to take pride in my differences, to own them, but that is difficult to do when people freeze the progress in favor of staring at my abdomen. Finally, after a few seconds passed, I leaned down slightly, forcing eye contact, and repeated myself: “Do you understand?” The young man nodded, and then his gaze was directed at the opening in the collar of my shirt. I sighed and leaned back, rolling the chair this time and folding my arms. “Okay,” I said, returned to my computer and work. “Good.”

Every non-neurotypical woman I know has gone through similar unsettling experiences. It is important that we share these stories to challenge what society deems to be socially acceptable. That’s how we begin to initiate change.

In the project’s third section, this challenging takes the form of poems and essays that acknowledge the issues, sometimes inverting expectations completely. The poem “Skin Revision,” for instance, inverts what is considered “treatment” and what “poison.” It also takes the form of a ghazal, an Eastern-originated form of poetry that challenges the more common Western structures and contains a complex structure of a series of couplets that utilize repetition at the end of ending lines in order to emphasize both unity and independence. Additionally, this poem is one of the few that breaks from the “outside diagnosis perspective” in that the speaker takes on a first-person narration.

This first-person narration was cultivated by the voices of individuals close to me who have been diagnosed with cancer. The poem opens as follows

Hospital blinds slant the light of night, a dark collection on my skin
While the antiseptic poisons the infection underneath my skin.

The venom spreads through the veins, branching blood, chasing away disease.
A cellular snake paralyzing, destroying: a viral reduction under my skin.

The final section, “Labeled,” sifts through the terminology that is available currently for disabled individuals and attempts to create a new kind of naming of that experience that is less stigmatized. It concludes as follows:

While the labels are not clear, it is apparent that there needs to be a new understanding. As the language of American society exists now, many of us feel marginalized or stigmatized, made to feel responsible for a physiological difference often unforeseen and uncontrollable. There needs to be a change, not only in the lexicon but also in how people perceive the state of being “chronically ill” or “disabled.” My brain will never learn not to swell when I cough or sing, my tissues will not “cure” themselves of their genetic mutation. While medication and surgery do allay some of the symptoms, my way of being is drastically altered from the typical human experience.

In thinking of new ways in which to address those whose physiology is not typical of the average population, I cannot help but return to the phrase “human being.” When we fixate on the state of the body as if it has been “robbed” of a “typical experience of life,” we eternally fetter that individual to a nonexistent, unfair comparison or to a negative condition that is subtracting from the experience that person is able to obtain as a non-neurotypical being. We become human wereings, human iffings. So I ask that anyone who goes to no great lengths to order their bodies, to grant those who do the deserved acknowledgement as creatures that exist in the here-and-now, to be with us as you are with yourself.

Thank you.

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