By Akhil Mulgaonker
Introductory Note
I am examining an image from the New York Times news article, “Sabrina’s Parents Love Her. But the Meltdowns Are Too Much.” (Goldstein) For the remainder of this paper, I may refer to the New York Times by its abbreviation, NYT. The article is written by Joseph Goldstein, who covers healthcare for the New York state desk. The photographs are taken by Libby March, a freelance photojournalist working for the NYT.
The article is an edition of The Great Read, a “sparkling piece of writing” handpicked from journalism published across the NYT newsroom. (Goldstein) The designation highlights “stories…[readers] might otherwise overlook,” positioned near the top of the homepage and sent directly to inboxes. (Goldstein) Generally, Great Reads are longer and delve deeper into stories than the headlines. Therefore, a Great Read like Sabrina’s story is linked to an extensive mechanism meant to amplify and centralize it in the NYT media enterprise. Moreover, the NYT is a hegemonic publication in the United States and indeed the world. It is the ‘newspaper of record’ in the United States and carries the moral legitimacy and cultural power of a highly regarded and widely read newspaper. I was further convinced of the popular currency of the article and its images by how it sparked vociferous and sometimes antagonistic debate and engagement between autistic people and allistic parents in public forums like Twitter.
Unlike many public texts, the lens of the article’s photographer focuses on an ordinary individual who does not otherwise live in the public domain. Sabrina is an individual threaded through the loom of a powerful institution like the New York Times. The result is that she is cocooned within thick webs of representations. Where is Sabrina beneath all these narrative wrappings and layers of spectatorship? At the same time, off the screen and page, she is embedded in social milieus, historical circumstances, and power relations that structure her physical form and living. Everybody in her life enacts and deploys culture to navigate these scenarios. What should the parents do to manage her? How does society experience and respond (or should respond) to her problematic existence? I want to explore the overlooked question; how does she manage and experience herself? In the article, she is alternatively portrayed as helpless and out of control or acting insofar as society expects her. Sabrina is written over and viewed at. I want to write with her. She is my partner in this essay. I may not retrieve her agency, that might be beyond the confines of this essay, but I wish to shear the ableist coat that covers her form. Her textual and pictorial marginalization should elicit a cold calculation of reality – how that reality can be stripped bare and how we can reclothe it with our agency and politics. I aim to begin that
process.
Analysis
…right from the start, from the time someone came up with the word ‘autism,’ the condition
Donna Williams, Autism: An Inside-Out Approach
has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.”
Joseph Goldstein’s portrait of an autistic girl’s meltdowns and ‘aggression’ first entered my awareness around the same time it was published in June of this year. Because I read the New York Times consistently, I saw this story featured prominently on the homepage. The headline emblazoned a painful implication of conditional love for a similarly disabled person as me. Sabrina is reduced to her meltdowns. Yet, it is very clear that this article was not meant for us. It is paradoxically about an autistic person but excludes autists from its production and certainly from its consumption. Indeed, in a very public manner, the New York Times represents autistic disability in ways that sustain neuronormativity for its readers. In other words, the article and the images therein do the ideological work to render autistic people as dangerous, wild, and burdensome elements in the social body – inherently and irredeemably ‘abnormal.’ Despite the
qualified and tokenized depictions of warmth and humanity, the text argues that Sabrina poses a dire and unmitigated threat to the smooth functioning of the Benedict family. The careful ways in which the family’s story is chosen and retailed convey a broader point about the condition of autistic people in relation to neurotypical American society. The Benedicts are served up as a microcosm for society writ large.
First, I want to acknowledge my positionality, to which I have only intimated thus far. I am autistic. Too often, our voices are written and spoken over by neurotypical people. Autism confounds, fascinates, and disturbs neurotypicals. Broadly, neuronormative discourse characterizes autism as something solely experienced in effect by neurotypical people but not
affectually by autistics. I want to center how autistic people experience themselves and not how society experiences them. This narrative choice will shift the paradigm in which we understand autistic people. The NYT article does the opposite and imposes a neurotypicalized experience onto the image of Sabrina. However, there is a secondary dimension to my positionality. I am what society constructs as a “high functioning” autist while Sabrina is considered “low functioning.” I do not seek to write about myself nor do I seek to impose my experiences, which are wildly different, onto Sabrina’s. Frequently, ableist hierarchies are also reproduced among autistic people. “High functioning” autists can similarly write and speak over “low functioning” autists. However, Sabrina and I share the same basic experience, with varying degrees, of course, of being written over and into harmful curative paradigms. Since autism medicalizes imperfect enculturation, it often renders us inexpressible to neurotypicals. Oppressive external representations flourish in the gap. Autism is a cultural existence that historically has been defined and known according to how it appears from the outside. I aim to offer a corrective to the hegemonic external representations that place autists in ableist, medicalized, and disciplinary
discourses.
Sabrina is depicted as a “violent autistic child.” (Goldstein) An image of her meltdown is displayed in a very public manner, inventing her as a threat to herself, family, and society. While she is consumed in a bewildering state, her father, mother, and a police officer surround her, seeking to resolve and assuage the episode. Though Sabrina is at the center, she embodies a frightening spectacle, a drama which situates the viewer externally and on the margins with the neurotypicals in the picture. The viewer is disidentified with Sabrina, centerstage, by being positioned alongside those in the image imagined as wholly reasonable and “normal.” The lens of photographer selects a moment of heightened contrast between Sabrina and other actors, imbuing Sabrina’s form with a message of tragedy mixed with danger. It is tragic that her family must contend with the danger she represents. Her parents are shown to be the ones who must contend with Sabrina’s meltdown. An image is chosen in which her parents feature as agents to whom the meltdowns are being done. Sabrina’s meltdowns are not her own, but rather an experience happening to her parents and is an objectified spectacle with which they view, cope, and intervene. The image’s message highlights the burden and danger Sabrina’s autism symbolizes for her family and their place in society and, with article, argues for her institutionalization as a way to resolve the danger and to improve the tragic outlook of her parents. Her meltdowns are depicted as solely experienced by those in her life and thus hastens the conclusion that it must be kept at bay, in an institution. Meanwhile, Sabrina’s experience is played down as unimportant because it doesn’t correspond with the curative teleology of the image’s narrative.
Many have noted how the “cure” is an ideological symbol, social dream, and cultural device that structures and practices the relations of society toward disabled people. (Clare) Cure is a means to render disabled people legible and a rhetorical ruse for the amelioration of their abnormality. Layers of curative ideology conceal Sabrina’s experience and relay her as a mere function of “trouble” for abled society (Clare) The problem of Sabrina’s meltdowns defines her experience. Her perspective is negligible unless it supports the cultural goal of solving her problem. Regardless of how she feels, she is abnormal. She must be solved. Evoked by the image, that is a naturalized and unquestioned assumption. The image of her meltdown refers to an underlying ideology that views autistic people as a pathological problem and desires for them to be cured from visibility and impact on neurotypical society. Sabrina stands in for a whole spectrum of autistic people and acts as a figure for a normalized autistic cultural world, a representational act that conflates a diversity of lived experiences and shoehorns them as problems in search of a cure. Sabrina’s family is a microcosm and symbolic site for society writ large. By profiling an individual experience in a public manner, the New York Times inflates and conflates it into a representation of more than just the individual family, rather it becomes a vehicle for meaning-making when every allistic person who views it imbibes and practices the skewed cultural information it contains.
A depiction of an out of control, extreme, and problematic autistic life attains a cultural currency once published. People see autism as a social “thing,” as a way for people experience themselves, through a lens informed by the image and the narratives and positionality with which the image is couched. The article was written by an allistic author, solely using allistic sources of information, specifically from those on the higher end of a power relation with the depicted autistic person, and was contrived for allistic viewing tastes and prejudices. Thus, the shape of the narrative and purposes it serves sustain and articulate the curative ideology of neuronormative society. When NYT editors selected Sabrina for their Great Reads initiative,they wanted a story that would fascinate, surprise, and be a “destination” for audiences. (Bahr)
All things that imply cultural strangeness and unfamiliarity. Autism becomes an intriguing character, a foil to the daily humdrum in which it is being read. The NYT offers a window into how an almost unimaginable autistic existence impinges in extreme and dangerous ways on a neurotypical world more familiar to the readers’ imagination. This contrast assures neurotypical audiences of their normality, grateful that their lives are not touched by such abnormal existences, and thus hardens their dominant subjectivity. Autism’s range of meanings in neurotypical imagination reflexively constructs the neurotypical self. Many have noted how desire frequently figures the “other” as an image against which the “self” is constructed. In this case, desire – fascination and morbid curiosity for autistic difference – motivates a consumption of an autistic individual to reinforce the structures of neurotypical self. This buttressing of selfhood is explicitly expressed when the article argues for normalization actions, the institutionalization of Sabrina, which explicitly and physically reaffirms and asserts control over the borders of neurotypical society.
However, beyond a skewed and ideological depiction of autism, the image also refers to a specific time and place, and thus reflects and supports a call to action in that specific context. The image was taken and published during the height of the COVID-19 pandemic, which disrupted social relations in extraordinary ways. COVID highlighted and exacerbated underlying impairment, dysfunction, and disability in society and specifically among children. For abled society, disability became an even more perceptible and inconvenient fact for the capitalist system. If the ablenormative system were to survive the pandemic, it had to reinscribe and double down on curative ideology. In order to lessen disability’s magnifying threat to abledness, it had to be relegated to the margins.Eventually, as abled society adapted, those who could not adapt were ignored, forgotten, and circumscribed. This discursive effacement of disability amid a mass disabling event recognizes the threat it poses to society and attempts to resolve it. The article and images of Sabrina were published in this context. The profile of an individual family’s crisis of autistic disability during the pandemic reflects a heightened fear of disability amid COVID social disruptions. It casts the story as tragic and terrifying, enabling abled catharsis and goading for curative politics. Displaying the autistic “trouble” alongside with a family’s search for amelioration is an allegory for all those who read and view it, providing an awareness of what is wrong in a pandemic context and what needs to be done.
The specific choice to profile Sabrina and her family was intentional and reinforces the underlying messages of the image. The choice was raced, classed, gendered, and disabled (in specific ways other than generally autistic). The editors chose a white, stereotypically middle-class family, with a mom and dad, in suburban America in order to project the American Dream, white privilege, and the heteronormative nuclear family as beleaguered and threatened by autistic disability. Sabrina’s meltdowns upset the expectation for what a normal middle-class family should look like. There is a collective grief of being so close to the dream yet suffering from disabling and debilitating experiences. The dramatic depiction’s particularity highlights the curative politics for which the article is advocating. It becomes more urgent and terrifying to the average New York Times reader. It is relatable – they see their security and social position at risk in the form of the family. They chose a 6’ 2”, 250-pound girl, gendering her in a way that defies the stereotypical notions of what a girl ought to be. Despite not using these words, she is presented as a deviant, unruly girl who must be tamed. They play on older notions of gender to convey a more modern story of deviance. The editors selected the most debilitating example of autism and represented it as indicative of a broader medical problem in society, rather than the specific social problem of access and care affecting the family. The overlapping structural meanings of the story compound the underlying message of autism’s problematic existence in society.
The image does not merely jeopardize Sabrina’s agency but rather tears it from her and subordinates her interests, desires, and body to purposes alien to her. One must ask, would an allistic child’s emotional strife and struggle, a child not considered abnormal or deviant, be spectacularized in this way without anything resembling informed consent or meaningful efforts to attend to their agency? Parental consent is seen to be enough, masking the reality that for autistic people care and kinship are conduits for violence as often as love. It is reprehensible that a child’s pain and debilitating life experiences would be displayed as an odd curiosity. It is not much different than the freak shows of the nineteenth century, notwithstanding the window dressing couching it as more acceptable to contemporary tastes. Sabrina’s humanity, sadness, and value are tokenized in the article and positioned solely in relation to her trouble for the parents. The article is about her parents and their problem, not about Sabrina’s life and the value contained therein. Lost in the depths of the New York Times’ thought process is the fact that she is a child, a human being with thoughts, feelings, and perceptions of her own. She can sense how she is being stigmatized and figured in painful ways by a powerful media company. I can feel it when she painfully tells the reporter that she too thinks that she should be institutionalized. She
feels like there is something wrong with her, like she is a burden and threat to her family. Sabrina’s spoiled identity, as Erving Goffman once termed it, suggests to her that those around her would be better off without her and that she should remove herself from society. (Goffman) The article does not attend to the internalized stigma but presents it as a righteous validation and confirmation of the stigma. (i.e., Even Sabrina thinks so!) One must also consider the cultural effect of the image for autistic people writ large. The reporters did not consult any autistic person nor utilized autistic people’s indigenous knowledge and self-definitions when writing the article. They wrote with an unquestioned and unexamined neurotypical perspective while failing to account for autism as a phenomenological existence. Disabled people do not live for abled consumption. Disabled people do not experience disability for abled responses and purposes. Nothing about us, without us.
I want to complicate the argument which I have presented so far. Thus far, I have been polemical and defiant about the pathologization of autism and the notion that it should be solved.But one cannot deny the fact that Sabrina lives through debilitating meltdowns which do cause her harm and those around her. However, I am not critiquing an acknowledgement of or grappling with debility but the particular ways in which the image represents, imposes a politics, and engenders an ensemble of social responses vis-à-vis autistic debility. Care’s efficacy and intentions for resolving disability do not by themselves define it as curative. Rather, something is curative if the goal of resolution is filtered through an ableist cultural politics — therefore becoming solution. The New York Times practices the cure by applying the emotional performances captured in the image toward an ableist politics. In other words, I want to move beyond the individuals in the story and focus on the ways in which they are recreated in order to support larger political and cultural projects. For example, one can see the attentive love given by the father as he attempts to calm Sabrina amid a meltdown. But placed in the ableist discourses of public culture, it becomes a conditional and burdensome act. The New York Times grafts a catchy headline onto a living story and thus authors a fiction with a host of novel significances. Love intermixes with grief and fear to represent autism as a fate similar to death. I am reminded of a famous quote by Jim Sinclair, an early autism rights activist:
When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.'”
Jim Sinclair
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.” (Sinclair) Love and care for Sabrina’s debility are there, but they are colored by other emotions, like grief and fear, which the NYT highlights and amplifies in support of looming ableist politics.
Concluding Note
Sabrina is not lost. She is not the small image plastered across newspapers and screens. She is not what the New York Times makes of her, nor is she what her parents represent her as. Despite the love and care her parents feel toward to her, I am refusing their voices as representative of her. As much as allistic parents know and love their autistic children, they are of a different world, with a different being. Their voices cannot and should not be a substitute for the agentic work of autistic people. Allistic caregivers are just that – caregivers, not authorities on autistic living. They do not get to decide how to define or enact our lives. They tend to define it in relation to looming cultural values, which do not have our interests at heart. Every allistic person is a product of their privilege and positionality. The reporter’s interpretive and authorial work should have recognized and effaced them. Only autistic people are capable of accessing deep sources of affect and directing them toward redefining, reconstituting, and transforming autism in society. Only autistic people are capable of working through the necessary conduits of subjectivity and deploying culture in ways which undo ableism. The goal of writing disability should be providing care and legibility but also power and scrutiny. Autism is multifaceted and
includes both weakness and strength, dependency and agency, contingency and authenticity. If we critically interrogate allistic perspectives, these definitional textures and complexities of living become available and possible. It releases us from the allistic gaze and from being displayed harmfully in public culture.
