Research

On Representation in Literature

At the bottom of my résumé, in a notes section titled “Additional Information,” sits a short, weighty list. I am a married lesbian, it reads, a mother, a Jew, and autistic. It is hard to write this so it doesn’t read like an apology. It’s not an apology, but one could forgive a reader for thinking it might be. After all, these identities have not historically brought working women favor, so their acknowledgement alone feels like a defense.

When I became a Jew, the conversion process took a year. “We want to be sure you know what you’re getting yourself into,” said my rabbi. I suppose I come to my professional relationships with a similar ethos, and this is for my sake as much (more?) as a potential employer’s or collaborator’s. I would love to be in a professional partnership that is built on transparency, inclusivity, and intentionality, and I would like nothing less than to be a part of one that would fall apart where those things are required. Been there, done that.

I know I’m meant to be encouraged as the culture shifts towards more deliberate inclusion. In some ways I am. I see literary agents all over the web putting #OwnVoices at the top of their manuscript wish lists. LGBTQ+ representation in publishing is increasing, albeit slowly (Lee & Low, 2020). Autistic author Katherine May has twice written NYT bestsellers, and while this is singular, it inspires me. These are undoubtedly positive trends for a writer like myself.

But then I have my lived experience. A poem uninvited to a Salvation Army cookbook after I disclosed my sexual orientation. A faux-progressive podcast that invited me on as a guest immediately after a group that preaches conversion therapy, asking me to “share [my] side.” A scholarship for disabled people with a rejection letter that read, “We didn’t choose you, but we are still so proud of you!” Proud of me? I am a thirty-three year old stranger...

Representation is the solution, and it is the hurdle. When a group is denied agency to speak for itself, its image is invented and propagated by someone else. Even when we are invited to speak for ourselves, often the content about which we are permitted to write is narrow and dictated by the majority culture. For example,

The Writing the Future report, commissioned by writer development agency Spread the Word… found that the “best chance of publication” for a black, Asian or minority ethnic (BAME) writer was to write literary fiction conforming to a stereotypical view of their communities, addressing topics such as “racism, colonialism or post-colonialism as if these were the primary concerns of all BAME people”, said the report’s author Danuta Kean… “Black and Asian authors complained that they were expected to portray a limited view of their own cultures or risk the accusation of inauthenticity if their characters or settings did not conform to white expectations. Failure to comply, many felt, limited their prospects of publication.” (Flood, 2015)

I acknowledge that efforts are being made in publishing to diversify rosters and prioritize the voices of marginalized groups. But there is still a long way to go. As of the release of the 2019 Diversity Baseline Survey from Lee & Low Books, 76% of the overall publishing industry (including but not limited to writers, agents, editors, and executives) was white. 81% was straight, a staggering 97% was cisgender, and only 11% had disabilities of any kind, including “mental illness (45 percent), physical disability (22 percent), and chronic illness (20 percent)” (Lee & Low, 2020). The findings, when compared to their 2015 survey of the same name, prompted the study’s organizers to conclude, “Comparing apples to apples, there’s still no change.”

Disenfranchised people have long arrived in film and literature (when we do) fragmented, superficial, a figment of the loudest voice’s imagination. We are hollowed out and put on display as a metaphor for the edification of the majority. The slogan that materialized from the South African disability rights movement, “Nothing about us without us,” and emergent trends in publishing like #OwnVoices, substantiate the value of diverse representation—not only in what characters appear in our stories, but also in whose voices are relied upon to shape the stories that impact our broader understanding of minoritized cultures, and what stories we are allowed to tell about ourselves. This quality of representation elucidates the complex and vibrant interior world of a stranger, so demystifying their experience and affording them the presumption of full and equal humanity. It is an urgent need in this fractured time.

But this kind of representation is still, by the numbers, all too rare. Often those of us who fall into underrepresented groups feel the impact of this in our daily lives in the ways we are (mis)understood. By way of example, I will here focus on my experience as an autistic writer. This is not to minimize my experience as a queer writer, or a Jewish one, nor is it to overshadow the experiences of marginalized groups I am not a part of (BIPOC, trans, Muslim, et al.). It is to cast a light on a single aspect of identity so as to explore it more thoroughly.

Theories of autism developed on the premise of deficit. While the condition was identified in the early 20th century, it was not explored thoroughly until the 1940s, when Leo Kanner and Hans Asperger (in different parts of the world) began writing about their study of children who embodied traits that would come to be defined as autism. It was then called “infantile autism” or “autistic psychopathy,” and was based on observations of external behaviors like social awkwardness and a resistance to change (Baron-Cohen, 2015).

While the way autism is labeled is today different, the general understanding of it has gone largely unchanged. “We should not be surprised to find words such as ‘disorder’, ‘deficit’ and ‘impairment’ in the DSM; it exists to pin down the exactitudes of problems brought to psychologists by patients,” writes autistic author Katherine May in her 2018 article for Aeon. “What’s striking, though, is the external nature of the criteria: the autistic person is passive here, being observed and judged, rather than explaining her own experiences.”

  In Literature and Disability (2016), writer Alice Hall explores the potential of literature containing autistic narrative to “challenge the notion of an absence of interiority by asserting a distinct and complex individual autistic presence” (p. 121). In fact, it is autistic literature that revealed to me my own autism. In contrast to the seeming incompleteness of autistic characters I’d seen from the outside in television and movies, first-person autistic narratives introduced me to the vast and intricate workings of an autistic mind, and in their authors I saw myself. Based on my own anecdotal evidence, I’d count Hall’s theory proven. Of Hall's three supporting references, however, two were written by non-autistic authors.

In fact, much of the literature lauded for its compassion and wisdom about autism is written by non-autistic authors and without real autistic input, a fact May laments in her article, “Autism from the inside” (2018). The result is a picture of autism that is narrow, partial, and reinforces a stereotyped mythology of autistic experience: we are like robots, machines. We are reclusive, disinterested, humorless, unempathic. We are empty, a sort of human void. Hall highlights this moment in Oliver Sacks’s foreward to Temple Grandin’s memoir, Thinking in Pictures: that the book “was ‘unthinkable’ when it was published ‘because it had been medical dogma for forty years or more that there was no “inside”, no inner life, in the autistic’” (p. 121).

This idea, though debunked, persists in modern media and goes broadly uninterrogated by non-autistic consumers. A particularly emblematic example of this comes from Judith Newman’s 2017 memoir, To Siri, With Love. Newman’s memoir, May writes,

triggered waves of outrage from the autistic community, on account of a multitude of condescending and ill-informed remarks, from the author’s mockery of her son’s emergent sexuality to her breezy certainty that he’s a kind of empty vessel. At one point, she wonders aloud whether she should arrange for him to be sterilised… In a 2017 interview with an online magazine, she suggested that her stories were humorous, and that she assumed this meant that autistic people didn’t understand them. ‘This book wasn’t really written for an autistic audience,’ she said.

And yet the cover of To Siri with Love brims with praise for the author’s emotional intelligence, calling it ‘moving’, ‘touching’, ‘warm’ and ‘wise’, telling us that it ‘will make your heart brim, and then break it’… Here, we glimpse the space where discussions about autistic people take place: a closed shop, in which we are subjected to intrusive and patronising comment, while being explicitly excluded from the discourse ourselves. (2018)

Examples of this abound. The best-selling novel The Curious Incident of the Dog in the Night-Time (Haddon, 2003) was met with such acclaim it became “one of popular culture’s introductions to the autism spectrum” (Shim, 2019). It was written about a boy with Asperger’s Syndrome (now diagnosed under the broader umbrella of autism) by an author who conceded he hadn’t researched autism at all in his writing. Angie Kim’s Edgar Award-winning novel Miracle Creek (2019) empathizes with a mother who wishes her autistic son dead. Regarding other creative mediums, I can’t help but think of C-3PO every time I see The Good Doctor appear on my screen after The Bachelor. (I think it’s the elbows.)

On the other side of this are writers like May, Joanne Limburg, Hannah Gadsby, Naoki Higashida, Helen Hoang, and myself, to name only a few—writers who write about autism, as May says, “from the inside.” This kind of writing has the capacity to catalyze a metamorphosis of our cultural understanding of autism, which is itself a varied and layered condition.

Autistic activists often say, “If you’ve met one autistic person, you’ve met one autistic person.” I, for instance, find it hard to identify with the common technology metaphors used to describe autism, like Higashida’s “library of video memories” or Grandin’s “VCR tape in my head” (Hall, 2016, p. 131). I do, however, relate to May’s poetic practicality, her “dammed up” mouth and profound sensitivity (2022). I relate to Limburg’s analytical fair-mindedness and unapologetic candor. Every member of this community, to borrow from Whitman, contains multitudes.

I am a married lesbian, a mother, a Jew, and autistic. This is not an apology. I am also a poet, an essayist, a lyricist, a student of language. I am principled and compassionate and fervently justice-minded. Where all these pieces of myself intersect is where I encounter a sense of responsibility to write for change—to demystify my own ‘otherness,’ to illuminate, to write and read and support other writers in telling stories that boldly diverge from the ones we are expected to tell.