Legible, visible, conspicuous: disabled ingenuity and “ability accommodations” in the disability memoir
Doctoral Candidate, Department of English
Memorial University of Newfoundland
First-person accounts of disability and chronic illness have been foundational to the development of disability studies and disability activism. The production of the literary disability memoir places certain rhetorical demands on its author, requiring the memoirist to “translate” their unique experiences as a disabled subject into language the nondisabled reader is equipped to understand. Using key concepts from disabled writers Eli Clare and Neil Marcus, the essay evaluates the disability memoir as a piece of assistive technology produced not for disabled people, but by disabled writers for the benefit of the reader whose embodied experience of disability and chronic illness is limited. These “accessibility accommodations” serve to mitigate the effects of experiential limitation in order to facilitate nondisabled readers’ engagement with disabled ways of being and knowing. The essay offers an overview of rhetorical strategies disabled memoirists use to make their narratives accessible, and surveys examples of literary memoir from authors writing from and through different mental, neurological, and physical conditions. I argue that adapting a first-person account of disability for the page results in a necessary, unavoidable disembodiment of the author’s story; this disembodiment is not a failure of the author to represent their lives fully and accurately, but rather an ingenious innovation on the part of disabled, chronically ill, terminally ill, and neurodivergent writers. As assistive technology, the disability memoir subverts of the typical disabled-nondisabled power dynamic, placing the nondisabled reader on the receiving end of the disabled author’s accommodations.
Keywords: Disability memoir; Autism memoir; Narrative; Autobiography; Accessibility; Assistive technology; Literature of disability; Disability performance
In her 2020 memoir I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, Sarah Kurchak writes, “I’m aware that non-autistic people find it easier to connect with a topic when it’s illustrated with casually recounted moments from the author’s life. I don’t get it, but it’s a thing I’m willing to attempt for their comfort. Like small talk.” (Kurchak 51, italics author’s own). The necessity of disability accommodations – often referred to as “accessibility” – is one of the keystones of disability activism. In this comment from Kurchak, however, we see the relationship inverted; the disabled person is changing the way she communicates to accommodate the needs of the non-disabled (or at least non-autistic) reader; she doesn’t “get it,” but she accepts it, and is willing to make the effort in order to make her reader comfortable. Kurchak knows that a comfortable reader is one who is more likely to engage with the book in front of them and, in turn, to absorb the author’s message. As Arthur W. Frank writes, disability memoir begins when an author turns their experience into a story they are “able to tell and that others would listen to, two conditions that are essential for storytelling and do not go without saying” (Frank n.p., italics mine).
This essay provides an overview of some of the ways in which disabled memoirists subvert accessibility norms, extending accommodations to non-disabled readers as a means of encouraging thoughtful engagement with disability narratives. My exploration is anchored by two quotations by disabled writers. The first comes from writer Eli Clare’s Brilliant Imperfection: Grappling with Cure; Clare explains “brilliant imperfection” as “a way of knowing, understanding and living with disability and chronic illness” (Clare xvii). The second is a frequently cited line by playwright and performer Neil Marcus, whose onstage persona in the long-running stage play Storm Reading declares that “[d]isability is an art … an ingenious way to live” (Marcus 32:10). Both lines derive from first-person accounts of living with disability, and both describe disability in ontological terms; for Clare, brilliant imperfection is a way of being in the world as a disabled person, while for Marcus, disability is a state of ontological ingenuity.
From my own standpoint as a disabled writer and scholar, I see Clare’s brilliant imperfection and Marcus’s “ingenious way to live” taken up by disabled memoirists not just in the content of their work – their descriptions of their lives, their details of the frustrations and joys they encounter – but in the existence of the disability memoir itself. In my view, the disability memoir is a piece of assistive technology aimed not, like most accessibility measures, at the disabled person, but instead offered by the disabled writer to the nondisabled reader who lacks the intimate experience of disability required to “get it.” From this perspective, the literary disability memoir – that is, disability memoir that harnesses the techniques of creative nonfiction and which is produced with the end goal of publication and distribution – subverts assumptions about who uses assistive technology, and about who possesses knowledge worth preserving.
A word, first, about “disability” as a category: prompted by Clare’s inclusion of both “disability” and “chronic illness” in his framework for brilliant imperfection, I include in my survey writers with physical disabilities, neurodevelopmental disorders, mental illness, and both chronic and terminal physical illnesses. While the experiences encompassed here are too vast to be spoken to – or of – by any one author, what these conditions share is that the people who live with them are dis-abled by social norms, expectations, and infrastructure. This perspective on disability is known as the “social model of disability,” which dictates that while impairment and pain exist in the individual person’s body, those impairments become disabilities when society fails to provide people the support that impaired individuals need in order to participate in the day-to-day life of their community (Cherney 134). While the social model of disability has its detractors (many of whom are invoked in Maia Dolphin-Krute’s Visceral: Memoirs on Illness Not as Metaphor), it is the primary model used within the field of critical disability studies, and it is the one I will use here.
Imperfection and ingenuity
At their most basic, Clare’s and Marcus’s ideas of brilliant imperfection and disabled ingenuity are celebratory ones. Clare goes on to elaborate that he understands brilliant imperfection as an “uppity, determined pride” (Clare xvii) – a notion that echoes work of disabled writers, scholars, and activists like Simi Linton, whose memoir My Body Politic follows its author from the car accident that resulted in her paraplegia at age twenty-four to her unbridled joy at zipping through the “wheelchair-pleasing” Guggenheim Museum (Linton 187). Or like Kay Redfield Jamison, whose An Unquiet Mind: A Memoir of Moods and Madness details the author’s experiences of bipolar disorder (Redfield Jamison uses the older term, manic-depressive illness), from her “most psychotic – delusional, hallucinating, frenzied” episodes, to moments that were “incredible and beautiful and took my breath away” (Redfield Jamison 219). Redfield Jamison credits her disorder for bringing into her life “a different level of sensing and feeling and thinking” (219). Or like Leah Lakshmi Piepzna-Samarasinha who, in Care Work: Dreaming Disability Justice, writes that disability justice includes recognizing “the hotness, smarts, and value of our disabled bodies […] it is both beautiful and practical” (Piepzna-Samarasinha 22-23). The idea that disability is not inherently and wholly negative, and that the disabled body-mind is more than simply a site of suffering, is a powerful and essential antidote to pervasive systemic ableism (Garland-Thomson 349; Cherney 19). Even Esmé Weijun Wang’s The Collected Schizophrenias, with its harrowing descriptions of psychosis (including an essay written while Wang was experiencing Cotard’s delusion, which is the conviction that one is moving through the world while dead) embeds in its stories a sort of celebration. Wang doesn’t celebrate schizophrenia itself – unlike Redfield Jamison, Wang is hesitant to credit her mental illness for her creativity (Wang 25) – but she does offer moments of gratitude for her continued survival and for her increasing ability to make peace with the condition she is unlikely to ever be without (Wang 202).
There is something, too, in both Clare’s and Marcus’s statements that moves beyond the celebration of disabled lives and potential; in both passages I see a gesture to what bioethicist Rosemarie Garland-Thomson would consider the “generative” power of disability. In her essay “A Case for Conserving Disability,” Garland-Thomson argues against the “eugenic logic” that dominates western culture, a logic which dictates that humanity should be striving for a future without disability and illness (and, by extension, without disabled and ill people in it) (Garland-Thomson 339-340). The classic rebuttal to eugenic logic is that disability is a neutral category; that disabled people are of no less value than are non-disabled people. Garland-Thomson, however, argues that disability is in fact not a neutral state of being, but in fact a highly valuable one (341). Garland-Thomson’s rationale for this assertion lies her evaluation of the “subjugated knowledge” accrued by disabled and ill people; this knowledge is both philosophical (for example, how to live in the present when one’s life span is shortened by terminal illness) and practical (for instance, how to navigate different spaces and systems while physically impaired). To Garland-Thomson, disability is worth conserving not because disabled people are “just like everyone else,” but precisely because disabled people are not like everyone else; they experience things nondisabled people do not experience, they know things nondisabled people do not know, and their experience and knowledge can benefit society as a whole.
Garland-Thomson’s “subjugated knowledge” is akin to Piepzna-Samarasinha’s “crip emotional intelligence,” a notion which, Piepzna-Samarasinha warns, elicits surprise in able-bodied people, who “are shameless about really not getting it that disabled people could know things that the abled don’t” (Piepzna-Samarasinha 69). But where the variety of subjugated intelligence that Piepzna-Samarasinha describes is primarily intelligence that benefits disabled people and communities (managing bureaucracy, creating flexibility for other disabled people, organizing systems of care outside of the official auspices of the medical system), the knowledge Garland-Thomson wishes to highlight is that which benefits disabled and nondisabled members of society.
Disability results in specific knowledge for the people who experience it; however, systemic ableism results in the experience and intelligence of disabled people being largely ignored, dismissed, and misinterpreted. This is made evident by the fact that the genre of disability memoir includes both memoirs by disabled people and memoirs by non-disabled family members and caregivers about the disabled people in their care; this is especially common in writing about autism, where the “autism parent” memoir is often more prominent than the “autistic person” memoir (Rodas 15). As Piepzna-Samarasinha identifies, non-disabled people are often resistant to the notion that there is anything they could learn from a disabled individual. The difficulty, then, becomes one of dissemination: how to make the subjugated knowledge of disabled people accessible to an audience which is ill-equipped to engage with it? To return to Kurchak, this means making accommodations for your audience, even if you don’t “get” or understand the need.
Neil Marcus passed away in late 2021; in an essay written in the playwright’s honour, historian Steven E. Brown reflected on having seen Storm Reading on the stage some thirty years earlier: “I experienced Disability Culture being performed right in front of me. I was thrilled” (Brown online). The vignettes that make up Storm Reading encourage compassion for Marcus and urge the audience to see his body not as “twisted, paralyzed, tortured, afflicted” but as beautiful and “very much alive” (Marcus 1:05:36). Marcus achieves this effect through the power of story, through dance, through movement. Because dystonia impacted Marcus’s motor control and his ability to speak clearly, the playwright shared the stage with two people: one voice interpreter and one American Sign Language (ASL) interpreter. In the performance, the interpreters speak and sign as Marcus and to him, but not for him, and while they take on different roles and characters throughout Storm Reading, their primary purpose is one of accessibility. The ASL interpreter makes the narration and dialogue available to Deaf audience members, and the voice interpreter does the same for everyone else, including the nondisabled. Thus, Marcus puts the nondisabled on the receiving end of assistive measures that translate his disabled speech for their benefit. As the playwright describes disability as “an ingenious way to live,” he simultaneously enacts this disabled ingenuity in order to make his subjugated knowledge accessible to his audience.
Performance by a disabled artist – especially by an artist like Marcus whose disabilities were both visible and audible – forces an audience to confront their preconceptions, anxieties, and discomfort around disability. Marcus enacts in Storm Reading what theorist Tobin Siebers refers to as “disability aesthetics,” a refusal “to recognize the representation of the healthy body – and its definition of harmony, integrity, and beauty – as the sole determination of the aesthetic” (Siebers 65). Regarding performance, Tami Spry writes that “language is the only thing we have between us to express the complexity of our thoughts and experience” (Spry 99), but this is not strictly true: writing for performance allows for many degrees of mediation, as the language choices will ultimately be accompanied by gesture, vocal inflection, light, music, choreography. Writing for the page doesn’t allow for any such mediation, and as a result the writer has to depend on their word choices, and their word choices alone, to make their message accessible. Thus, while disability performance transmits subjugated knowledge through proximity to the disabled body, disability memoir makes disability accessible precisely by disembodying this knowledge. No matter how detailed, how evocative, how visceral a writer’s account of their embodied experience may be, the act of translation into text on a page (as opposed to text to be performed) dis-dis-ables the story. In order to make the experience of disability into something a nondisabled reader can understand, a writer must convert their experience into something the nondisabled reader has the tools to grasp. Like Kurchak, they must add personal anecdotes and small talk; like Marcus, they must provide interpretation.
There is a strain in life-writing that suggests that, in telling one’s story, a person writes themselves into being; as Susannah Mintz writes, “[i]n the act of telling our stories, we materialise” (Mintz 345). The value of life-writing for people who have experienced trauma, including those traumas relating to illness, injury, and disability, is well documented; as Annamarie Watharow writes of her own life-writing practice as a mode of rewriting the “ontological self” after experiencing vision and hearing loss due to Usher syndrome, “expressing my narrative … is therapeutic through organized processes that foster a restored narrative emplotment, security of self, and a diminution of suffering” (Watharow 19). However, while “we” may materialize in the act of telling our stories, the writing down of the self – what I will refer to here, perhaps clunkily, as enpagement – in effect flattens disability, making it into a version of itself that is able to be apprehended and comprehended by those not endowed with Garland-Thomson’s “subjugated knowledge” or Piepzna-Samarasinha’s “crip intelligence.” Once confined to the page, the embodied relationship between disability and expression becomes less evident; the adaptations and ingenuity a disabled writer had to use in order to get their story written vanish the moment words have been put down. Christy Brown’s My Left Foot, for example, begins with an anecdote about the moment Brown first decides to use his foot to hold a piece of chalk and write: “In a moment everything was changed, my future life moulded into a definite shape” (Brown 14). Brown’s prose is clear and precise, in contrast to the jerky and frustrated movements he describes in the passage. A reader can read about the obstacles Brown faced, but they do not experience them the same way they would if the author were performing them (which might explain, in the case of Brown’s narrative, the popularity of the memoir’s film adaptation, starring the nondisabled actor Daniel Day Lewis as Brown).
Consider Eli Clare’s account, in Brilliant Imperfection, of having been diagnosed with “mental retardation.” Clare’s literary voice is fluid, erudite, self-aware, and poetic. When he describes his diagnosis of “mental retardation” (Clare 41), we read his description as confirmation that such a diagnosis is false: our notion of “mental retardation” is incompatible with Clare’s highly accomplished prose. Part of the power of Clare’s writing is that it forces the reader to confront the gap between what has been said about the author and what the author tells us about himself. On the page, we may impose an imagined voice or body on Clare as narrator of his story, but unless we have seen Clare present his work we have only his written words and our own preconceptions go on.
For those who have had the experience of witnessing Clare, in person or on video, reading his work, Clare’s disability is evident (Berkeley Public Health, Eli Clare: Grappling With Cure). The effects of cerebral palsy render Clare’s smooth prose halting. He reads slowly, slurs slightly, and pauses often. The audience experiences a much more bodied representation of the work than do those who only encounter it on the page, who will read about Clare’s disabled ingenuity without necessarily experiencing his words through it. I see a tremendous, delightful irony here: the act of writing one’s disability narrative, in effect, erases disability – its tics, its perceptible breaths, its asymmetry – from the text. Put differently, in making disability legible, in enpagening the disabled self, first-person writing for the page renders disability invisible.
Of the urge to write in the first person, Susannah Mintz says, “We call this autobiographical enterprise speaking out, making visible, giving voice, being heard, in language that seems almost inescapably corporeal” (Mintz 435). But written language is not corporeal; the body and a book are both texts, but a book is not a body, and the body is not a book. For Eli Clare to make his disability narrative accessible to the reader, he has to mitigate his disabled body’s interventions; he must make his story more about the disabled body that of it. I do not see this disjuncture as a failure or, as some might, as a sort of standardization (at best) or defanging (at worst); rather, I see this very act of making disability make sense on the page – of uncoupling it from the “scary” image of the disabled human being (Garland-Thomson 340) – a highly subversive and, at the same time, generous act of meeting the non-disabled reader where they are, in a manner they can understand. If this notion feels patronizing to the non-disabled reader, well, that’s the discomfort of being given a taste of one’s own medicine.
Memoir within a memoir
Brilliant imperfection, disabled ingenuity, subjugated knowledge, crip emotional intelligence: in order to make disabled stories accessible to nondisabled readers, disabled memoirists harness all of these. I have already gestured toward the ways in which memoirists confront ableist norms by expressing joy, pleasure, and celebration in and of their disabled body-minds; this is the most straightforward way in which brilliant imperfection shows up in contemporary disability memoir, and it is powerful. A more nuanced manifestation of disabled ingenuity in memoir appears in what I call “disability memoir within a disability memoir.” This mode craftily uses narrative around one relatively well-known disability or illness (epilepsy, cancer) as a framing device to explore other, more amorphous conditions with which the writer lives (trauma, depression, addiction). The motivation behind these memoirs is perhaps a bit opaque: a critic might ask, “how aware are the individual authors of the gap between the illness they think they’re writing about and the disability subplot that emerges as the pages go on?” I, however, discern brilliant imperfection in these memoirs’ content, and disabled ingenuity in their form. One example that might demonstrate this (and I admit, it is a contentious one) is Lauren Slater’s Lying. Slater’s “metaphorical memoir” has aroused ire in her nondisabled readers, who find the author’s blurring of fact and fiction hurtful and manipulative, and in her disabled ones, who feel Slater is trading in outdated and harmful stereotypes about epilepsy (Couser 112). Critics speculate as to whether Slater has epilepsy at all, as the condition is notably absent from her earlier memoirs. One of the complaints about Lying seems to stem from the readers’ assumption that they are reading a book about lying when in fact the book is almost certainly a compilation of lies, and the work of a fabulist. But this is something Slater, as first-person narrator, tells the reader over and over, from the book’s title to its afterword, where she closes her narrative by saying “there’s only one kind of illness memoir I can see to write, and that’s a slippery, playful, impish, exasperating text, shaped like a question mark” (Slater 221). While Lying is ostensibly about one disability (epilepsy) the book ultimately reveals itself to be the witnessing of another disorder: an intangible, seemingly sourceless trauma. As Eden Wales Freedman writes, “Slater wants to witness her story, but she cannot extract the truth from the haze of her imaginings” (Freedman n.p.).
This disability-narrative-within-a-disability-narrative is not unique to Slater. Jenny Diski’s memoir, In Gratitude, doesn’t appear to play fast-and-loose with the truth like Slater’s does, and yet there is a similar mode of anchoring; In Gratitude begins with Diski’s diagnosis with inoperable lung cancer. The author announces that this will be her cancer diary, but it is only a cancer diary in a rather oblique sense. Diski lauds Susan Sontag for having used her experience of cancer to write her “famous essay about the cultural nature of illness,” but she bristles at the notion of writing, herself, “[a]nother fucking cancer diary” (Diski 16). And indeed, Diski’s memoir is, for the most part, about everything but cancer. Diski writes about her experience of having lived, as a teenager, with author Doris Lessing, but the book isn’t really about that, either; cancer is the framing device for Diski’s Lessing narrative, but beneath and around the Lessing narrative lie details of Diski’s childhood trauma, numerous sexual assaults (including sexual abuse by her parents), multiple instances of institutionalization, a diagnosis of Borderline Personality Disorder that Diski doesn’t feel quite fits, and periods of drug addiction, all with a tone that is cavalier, even dismissive of these conditions and experiences as disabling. While I get the sense that Diski would reject the notion of her book as a disability narrative or of herself as disabled, I see in In Gratitude this formal disabled ingenuity: the use of one more concrete, more biological and explicable illness – cancer – as a safe perch from which to introduce and examine these other conditions which are abstract, subjective, and intangible.
Lucy Grealy, too, embeds disability narrative within disability narrative; Grealy’s narrative in Autobiography of a Face begins with her diagnosis at age nine with Ewing’s Sarcoma, a very rare and almost always fatal form of cancer. Her cancer treatment saves her, but the procedures result in facial disfigurement, and Grealy spends the rest of her life undergoing further surgeries to correct these effects. As with Diski’s memoir, cancer itself is not the disorder at the heart of Grealy’s story; the author’s relationship with cancer is supplanted by the drive of the cancer-free Grealy to repair the damage – to hide the imperfection – that has come as a result of her life-saving treatments. While Audre Lorde, in The Cancer Journals, rejects post-mastectomy pressure from care professionals to wear a breast prosthesis as a way of disguising the effects of illness and intervention on her body (Lorde 52), Grealy seeks out treatment after treatment to rebuild her jaw, initially in the hope of looking “normal,” and this quest results in periods of depression, years of excruciating pain, and an addiction to prescription painkillers (and, although Grealy’s memoir ends before this phase of addiction begins, to heroin; Grealy died from a heroin overdose at age 39) (Grealy 2007 n.p.). For Grealy, as for Diski, cancer and its quantifiable effects are a useful framing device to try and make sense of the less tangible illnesses in the author’s life. This, again, I see as “disabled ingenuity,” an ingenious way to share one’s subjugated knowledge, to try and rebuild the self through narrative, and to accommodate the non-disabled reader by providing them with a better-known health condition through which to make sense of those that are harder to define.
The austistic subject
I began this essay with a passage from an autistic memoirist, and I will turn now to the ways in which brilliant imperfection and disabled ingenuity are taken up in the sub-genre of disability memoir that has emerged around autism. As I mentioned above, the term “autism memoir” is often used to refer to memoirs by parents and caregivers of autistic children; these volumes have tended to centre the experiences (often negative) of the non-autistic author and have at best contributed to the notion of autism as a mysterious, bewildering, impenetrable condition (Mintz 440-441), and at worst framed autism as an alien force that replaces “normal” children with emotionless changelings (Rodas 15) who barely possess human subjectivity, let alone the skill and intellect required to document one’s own life story in writing. As M. Remi Yergeau elaborates in Authoring Autism: On Rhetoric and Neurological Queerness, the abilities required to construct a memoir – language, self-awareness, some sense of narrative structure – are abilities that autistic people have, historically, been believed to lack. If this belief is correct, then the there can be no such thing as an autistic memoirist: an autistic author of the self can’t really be autistic, because an autistic person doesn’t have the authority – the subjectivity – to write about the self (Yergeau 21). Just as Clare’s ability to write beautifully and convincingly about his childhood diagnosis of “mental retardation” exposes the diagnosis as false, for many readers a similarly beautiful and convincing first-person account of autism means that the author must not actually be autistic. The difference between Clare and his autistic peers is that Clare’s accomplishment demonstrates that, for him, “mental retardation” is a misdiagnosis, while the accomplishments of autistic memoirists demonstrate instead that the diagnostic parameters for autism – and perhaps even the understanding of autism as a medically diagnosable condition – are inadequate. Given what Yergeau identifies as the rhetorical impossibility of the autism memoir, I argue that the autism memoir is itself an act of brilliant imperfection and of disabled ingenuity, for the simple reason that autistic people are not supposed to possess either the communication skills or the individual subjectivity required to accomplish such a feat as a first-person account of their (our) experiences.
Theorist Aimee Morrison writes that “[d]isability identity itself is rooted in story” (Morrison 694), and autistic identity fulfills this condition entirely. No gene has ever been identified as responsible for autism; there is no blood test, no brain scan, no way to gauge autism’s presence or absence in response to medication. Lacking any other modes of detection, clinicians must base autism diagnosis almost completely on narratives solicited from the autistic person themself and from people in their lives who know them well: parents, partners, teachers. These narratives are supplemented by the diagnostician’s own narrative interpretation of their autistic subject; as Morrison writes, “one of the diagnostic criteria of autism is the idea that other people find me weird, as based on observational reports” (695, italics author’s own). This truth demonstrates just how malleable, how subjective, how narratively constituted a condition autism is. Indeed, one of the tools used by diagnosticians in identifying autism is assessing how their subject responds to narrative itself: can they arrange picture cards in the appropriate (as determined by the diagnostician) order to make a sensible (as determined by the diagnostician) story? Are they able to predict what will happen next in a fabricated (by the diagnostician) scenario? Are they able to identify the motivations (as understood by the diagnostician) of fictional characters in a fictional interaction? Autistic subjects are storied based on how they (we) interact with story. For an autistic writer to seize this diagnostic tool and to use it as a means to share how they understand themselves and the world (rather than for it to be used to define them based on how the world sees them) is a pure act of “uppity, determined pride.”
But in adopting and adapting this diagnostic tool, an autistic memoirist is forced to compromise; the linguistic, communicative, and narrative “weirdness” that defines autism is the very embodiment that must be excised in order for the autistic self to be made legible, to be enpaged. If autistic cognitive difference causes autistic people to experience story in a way that is unlike that of non-autistic people, then the act of translating that story for a non-autistic audience means that, as Julia Miele Rodas writes, autistic writers are “unlikely to embrace autistic tone and expression in writing their own lives … the expressive language used to relay autistic lives is sanitized, regularized … rendered at some level nonautistic.” (Rodas 21) For Rodas, in order for an autism memoir to be understood by – that is, adapted for – the non-autistic reader, the text has to be stripped of the linguistic patterns and expressions that are inherent to autism. It is not just the body that must be excised from the text of an autistic author in order for that text to be understood; the autistic mind must also be tamed. What, then, is left?
Daniel Tammet’s New York Times bestselling memoir, Born on a Blue Day, details his life as a child of a large, working-class English family. Tammet is autistic, has savant syndrome, experiences intense synesthesia, and is best known for breaking the world record for public recitation of the number pi. While Born on a Blue Day follows the formal conventions of memoir – it is linear, chronological, written in clear prose – it does demonstrate a sort of autistic logic in its use of diagrams for concepts Tammet can’t possibly explain in language, like his highly idiosyncratic correspondences between numbers and shapes (Tammet 3). This is an “ability accommodation,” an attempt to make Tammet’s highly specific sort of subjugated knowledge accessible to the almost certainly non-savant reader. The words to describe the phenomena Tammet experiences simply don’t exist, and as a result he must turn to the visual in order to make himself understood. Sarah Kurchak, too, uses autism-friendly techniques to free her prose from the normative constraints of linear narrative. Kurchak’s I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder takes the form of an often-comedic how-to book, with “fifteen uneasy steps to an autistic ‘success’ story” (Kurchak 18). This itemizing is consistent with what Julia Miele Rodas would consider “autism poetics” (Rodas 58), and Kurchak’s extensive, expansive use of footnotes takes the reader out of the roughly chronological, linear narrative and off on all manner of tangents, many of which have to do with Kurchak’s autistic “special interests” throughout her life.
Autism, when not accompanied by impaired motor control, is generally considered an “invisible disability.” For people who know what to look for, however, autism announces itself in a thousand tiny ways: the eye contact that seems a little too forced, the laugh that seems a little too rehearsed, the energy a body gives off when it is trying its best to suppress its natural tics and gestures. As an autistic person, I read Tammet and Kurchak as autistic not just in the narratives they provide, but in the way they tell their stories: Tammet’s structure and tidy diagrams and Kurchak’s chaos of tangents are both, to my mind, products of autistic cognitive style. I can’t speculate on whether a non-autistic reader would pick up the “tells” the same way. One of the difficulties of living with autism is that most autistic traits are simply regular human traits with their frequency and intensity dialed up to the point that they interfere with everyday life; as such, these traits are often assessed by non-autistic people as mere personality quirks. If a non-autistic reader perceives Tammet and Kurchak as simply quirky or offbeat, does that mean that their memoirs have, in effect, become non-autistic? Or is this, instead, a glimpse at one of autism’s key pieces of subjugated knowledge: how to mimic non-autistic people and move through the world undetected?
I end this essay with a final example of autistic memoir, one that I feel captures beautifully – in both its content and its form – autistic experience. If Anand Prahlad’s The Secret Life of a Black Aspie had been published as fiction, it would be praised as magical realism; Prahlad stretches time and condenses it, speaks to spirits, communes with buildings and objects, loves intensely and inexplicably, and describes in lavish detail scenes and sensations that appear to have little bearing on the narrative arc (if you can call it an arc). He writes that if the dishes are arranged in a certain way in his cupboard they become “so miserable that I couldn’t stand it. They … look at me as if I had betrayed them” (Prahlad 217). Prahlad makes few of the “ability accommodations” Tammet and Kurchak make, and his text is not one where the author’s autistic mode of expression is restricted to subtle formal “tells.” Prahlad’s text is instead conspicuously autistic, and I, as an autistic reader, recognize many aspects of myself in Prahlad’s story. I wonder, though, could The Secret Life of a Black Aspie ever be as widely read as Tammet’s memoir, or even Kurchak’s? Does Prahlad do “enough” to make his story believable to a reader who lacks autistic subjugated knowledge? Michael Bérubé writes that “the conditions under which certain authors claim the authority of autobiography are sometimes exceptionally hostile to the claim, so much so that the claim simply cannot be understood by the dominant mode of reading” (Bérubé 341). Would The Secret Life of a Black Aspie’s circularity and fixation on “bizarre” details cause it to be miscategorized as a trauma narrative, just as many autistic adults are misdiagnosed with trauma-related disorders? What happens when a disabled writer refuses to make their narrative accessible to the non-disabled reader, and instead chooses to share their brilliant imperfection only with the few they are confident will “get it”?
- Timestamps for Storm Reading refer to the 1996 recording of the performance at the Lobero Theatre in Santa Barbara, California, available at https://www.youtube.com/watch?v=XVT9eqeiDdc&t=12s.
- Berkeley Public Health, Eli Clare: Grappling With Cure. 29 June 2019, www.youtube.com/watch?v=wO_Gr-n6aq8&t=4230s. Accessed 4 February 2022.
- Bérubé, Michael. “Autobiography as Performative Utterance.” American Quarterly, vol. 52, no. 2, 2000, pp. 339–43.
- Brown, Christy. My Left Foot. Minerva, 1990.
- Brown, Steven E. “Reading Storms, Embracing Life: A Remembrance of Neil Marcus.” Disability Visibility Project. 9 January 2022, https://disabilityvisibilityproject.com/2022/01/09/reading-storms-embracing-life-a-remembrance-of-neil-marcus/. Accessed 5 May 2022.
- Cherney, James L. Ableist Rhetoric: How We Know, Value, and See Disability. The Pennsylvania State UP, 2019.
- Clare, Eli. Brilliant Imperfection: Grappling With Cure. Duke UP, 2017.
- Couser, G. Thomas. Signifying Bodies. U of Michigan P, 2010.
- Diski, Jenny. In Gratitude. Bloomsbury USA, 2016.
- Dolphin-Krute, Maia. Visceral: Essays on Illness Not as Metaphor. Punctum Books, 2017.
- Frank, Arthur W. “An Illness of One’s Own: Memoir as Art Form and Research as Witness.” Cogent Arts & Humanities, vol. 4, no. 1, 2017, n.p.
- Freedman, Eden Wales. “Let Seizing Truths Lie: Witnessing ‘Factions’ in Lauren Slater’s Lying.” Humanities, vol. 6, no. 89, 2017, n.p.
- Garland-Thomson, Rosemarie. “The Case for Conserving Disability.” Journal for Bioethical Inquiry, vol. 9, no. 3, 2012, pp. 339-355.
- Grealy, Lucy. Autobiography of a Face. Harper Perennial, 1995.
- Grealy, Suellen. “Hijacked by grief.” The Guardian, 07 August 2007, https://www.theguardian.com/books/2004/aug/07/biography.features. Accessed 4 February 2022.
- Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness. Alfred. A. Knopf, 1995.
- Kurchak, Sarah. I Overcame My Autism And All I Got Was This Lousy Anxiety Disorder. Douglas and McIntyre, 2020.
- Linton, Simi. My Body Politic. U of Michigan P, 2007.
- Lorde, Audre. The Cancer Journals. 1st ed., Spinsters, Ink, 1980.
- Marcus, Neil. Storm Reading • Lobero Theatre • 1996. Peter M Robertson, 27 Aug. 2017, https://www.youtube.com/watch?v=XVT9eqeiDdc. Accessed 4 February 2022.
- Mintz, Susannah B. “Strangers Within: On Reading Disability Memoir.” Life Writing, vol. 9, no. 4, 2012, pp. 435–443.
- Morrison, Aimee. “(Un)Reasonable, (Un)Necessary, and (In)Appropriate: Biographic Mediation of Neurodivergence in Academic Accommodations.” Biography, vol. 42, no. 3, 2019, pp. 693-719.
- Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice. Arsenal Pulp Press, 2018.
- Prahlad, Anand. The Secret Life of a Black Aspie. U of Alaska P, 2017.
- Rodas, Julia Miele. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. U of Michigan P, 2018.
- Siebers, Tobin. “Disability Aesthetics.” Journal of Cultural and Religious Theory, vol. 7, no. 2, 2006, pp. 63-73.
- Slater, Lauren. Lying: A Metaphorical Memoir. Penguin, 2001.
- Spry, Tami. Body, Paper, Stage: Writing and Performing Autoethnography. Left Coast Press, 2011.
- Tammet, Daniel. Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant. Free Press, 2006.
- Wang, Esme Weijun. The Collected Schizophrenias. Graywolf Press, 2019.
- Watharow, Annamarie. “Rewriting the Ontological Self Following the Loss of the Communication Senses.” Still Here: Memoirs of Trauma, Illness and Loss. Edited by Bunty Avison et al. Routledge, 2019, pp. 17-33.
- Yergeau, M. Remi. Authoring Autism: On Rhetoric and Neurological Queerness. Duke UP, 2018.