A World Where We Are All Autistic

Rachel Adams

On a memorable spring evening in 2002, the philosopher Peter Singer welcomed disability rights advocate Harriet McBryde Johnson to speak at Princeton University. The event was controversial, given that Singer had publicly claimed that parents should be allowed to euthanize children with severe disabilities, and that Johnson was herself severely disabled. Born with muscular dystrophy that left her body twisted and frail, Johnson knew she was once precisely the kind of infant that, by Singer’s logic, should have been killed at birth. Recalling her visit to Princeton in The New York Times Magazine, Johnson wrote,


He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child.


By the end of the visit, Johnson reports, she and her host respectfully agreed to disagree. When Johnson died in 2008, Singer wrote an eloquent tribute where he conceded, “her life was evidently a good one, and not just for herself, because her legal work and political activism on behalf of the disabled was valuable to others as well.” But questions about how disability challenges the nature and definition of personhood continue to be hotly debated. Is it important to distinguish the rights of persons from those of animals, and if so, by what criteria? Should there be a minimal threshold for defining who counts as a person? And are severely disabled persons entitled to the same rights and privileges as other citizens?

Such questions swirl in the background of Sabina Berman’s luminous debut novel, Me, Who Dove into The Heart of the World, recently translated into English by Lisa Dillman. Its protagonist, Karen Nieto, does not become human—at least by Singer’s criteria, or her own—until relatively late in childhood. Up to that point she has been living ferally in the basement of the family manse, where she spends her days gorging on sand and swimming in a pool of seawater. Scarred, naked, and nonverbal, Karen is discovered by her aunt Isabelle, who arrives in Mazatlan after inheriting the ironically named family canning business, Consolation Tuna.

Where language, like birth, is about separation and division, Karen longs for a more primal experience of oneness with her environment.

Shocked to find a filthy creature known as “the thing” inhabiting the lowest floor of her new home, Isabelle “set herself the task of turning it into a human being” by teaching her language. Karen’s first word is “Me,” which she spells with a capital M throughout the novel. Narrated in the first person, Me, Who Dove into the Heart of the World is the story of Karen’s discovery of language and personhood as she looks back, at age 41, over the course of her life. She describes coming into language as a kind of violent rebirth: “on August 21, 1978, Me came into being, there by the sea, screaming my lungs out, Me, Me, bald and fully formed, wearing knee socks and huaraches.” These inauspicious beginnings instill Karen, diagnosed as “a highly functioning autistic,” with a respect for being that precedes language or thought.

Even as she acquires the capacity for reason and verbal communication, Karen continues to seek experiences of pure, creaturely sensation. Where language, like birth, is about separation and division, Karen longs for a more primal experience of oneness with her environment. Growing up among fishermen and tuna packers, she learns to dive, finding companionship among sea animals that “are what they are and nothing more. And nothing less, either.” Diving introduces Karen to an unusual form of self-soothing that involves wearing a wetsuit and dangling from the harness used to hoist swordfish from the ocean. Suspended above the dock, she reflects, “I hung absolutely still but I didn’t disappear, and I felt no fear of dangerous humans.” When she isn’t dangling from a fishing hook, Karen finds peace by descending to the ocean floor and resting her head on a rock until she has just enough air left in her oxygen tank to reach the surface. Diving allows Karen to leave herself behind and become utterly absorbed into her surroundings as her “Me” dissolves into “the enormous, joyous Not-Me: the sea.” The novel associates this loss of self with an environmental ethics that would appreciate the value of all sentient beings.

Around the factory, the workers learn to love Karen’s unusual manner of dressing and she becomes “the joy of Consolation Tuna Ltd.” Once she goes off to college, it is another story. After finding Karen hanging from the ceiling in her wetsuit, one roommate after another requests reassignment. Karen is alienated from her peers because she is disarmingly literal, and has trouble grasping social cues. She manages her estrangement awkwardly, attempting to explain herself by wearing a yellow label that reads “Different Abilities.” The content bespeaks a bland political correctness, but the form seems like a more sinister allusion to the Nazi practice of labeling degenerates. Berman, a Mexican playwright who has often brought Jewish themes to the stage, must have had this history of prejudice in mind, although Jewishness does not otherwise play a significant role in the novel. Karen’s teachers and classmates send their own mixed messages about her differences, with attitudes ranging from polite tolerance to revulsion. But the novel invites us to ask whether it is possible, in educational environments that require uniformity of thought and behavior, to identify neurodiversity without stigmatizing it.

The use of an autistic protagonist presents intriguing narrative possibilities that authors have only recently begun to explore. The past decade has seen the publication of several genre novels featuring autistic characters, including Elizabeth Moon’s The Speed of Dark, Cammie McGovern’s Eye Contact, and Jodi Picoult’s House Rules. Mark Haddon’s more well-known and novelistically ambitious The Curious Incident of the Dog in Night-Time includes some gimmicky devices intended to telegraph “autism,” like titling the chapters with prime, instead of sequential, numbers, and inserting images to show how the narrator, Christopher Boone, thinks in visual terms. Haddon’s work grappled more seriously with the problem of neurodiversity and narrative form by creating an ironic gap between Christopher’s naive, dispassionate reporting of events and his inability to grasp their social nuances. In one memorable scene, Christopher discloses to his mother that, after she ran off with another man, his father hid her letters and told him she had died. “She didn’t say anything for a long while,” he writes. “And then she made a loud wailing noise like an animal on a nature program on television.” Christopher can vividly describe his mother’s response, even as he lacks an understanding of his description’s emotional force. His dispassionate comparison of her sounds of grief to “an animal on a nature program on television” is more emotionally compelling than any attempt of his to identify her feelings would be.

What are the consequences of a narrator who records events with almost mechanical precision but so little understanding of their emotional implications?

Berman uses a similar form of narrative irony, sometimes to comic effect. Karen experiences college life as an ethnographer moving among an unfamiliar tribe. A mixer, she explains, is “a nighttime meeting in a dimly lit backyard where they cooked hamburgers and played music and students in shorts and T-shirts stood in groups of 2s or 3s to talk and laugh and talk more and sweat in the summer heat, staring into each other’s pupils and drinking glasses of alcohol disguised with artificially flavored refreshments, essentially in the attempt to form a stable 2, that is, in the attempt to find someone to mate with.” As Karen observes clinically, the goal of all this exertion is “their genitalia finally united with no interceding fabric.” Karen is able to describe what she sees in precise detail, even while she is removed from the needs and desires that drive her classmates’ social rituals.

Karen is an utterly dependable storyteller because—by her own account—she is incapable of lying. Hewing to the classic autist profile, she claims to have no fantasies and no grasp of figurative language, so she describes the world exactly as she perceives it. Like Haddon’s Christopher Boone, she also lacks a theory of mind, or the capacity to identify other peoples’ feelings or motivations.

What are the consequences of a narrator who records events with almost mechanical precision but so little understanding of their emotional implications? Berman offers conflicting answers to this question. When asked to recount the story of Little Women, Karen leaves out all the details. “Those are just the little things in between, they don’t serve any purpose,” she tells her aunt Isabelle. “You take them away and it’s still the same story.” If this is Karen’s understanding of story, we might expect a minimalist narrative, sheared of all emotive excess, leaving only the bare bones required to move the plot forward. At another point, Karen submits an exhaustively detailed blueprint of an animal slaughtering facility for a class assignment. Exasperated at the excessive detail, her professor exclaims, “A useful map ignores minute details in order to capture the general design!”

Is Karen preoccupied with detail to the point where she misses the big picture? Or is she interested only in plot, while seeing detail as superfluous excess? Either extreme might have inspired a more experimental novel, but probably also less palatable reading. Nor are these the only inconsistencies Berman leaves unresolved. Despite Karen’s assertion that metaphors are lies, the life story she tells in Me, Who Dove into the Heart of the World unfolds in richly figurative detail: the housekeeper (aptly named Gorda) looks “like an 8, with huaraches on her chubby-toed feet”; the netted tuna wheeze “like out-of-tune trumpets”; Karen imagines she will die “the same way the ripe lemon becomes too heavy and falls from the branch to the ground.” Such sentences sow doubts about whether Karen underestimates her own capacity for figuration, or whether it is Berman who chafes at the constraints of having created an overly literal narrator.

Although Berman’s protagonist speaks in a lyrical voice, she also exhibits many of the outdated clichés about the mindblindedness of autistic people.

The more serious question raised by this confusion is whether this novel is really very interested in autism at all. The notion that autists lack a theory of mind, which clearly underlies Karen’s difficulty in understanding the mental states of other people, has become controversial. Some critics and activists argue that this is an outdated and inaccurate description of a condition that, in fact, is often characterized by an enhanced understanding of figurative language and a sometimes debilitating capacity for identification with others. Ralph Savarese, a literary critic and father of a nonverbal autistic son, disputes the idea that autists are incapable of empathy. Instead, it is we neurotypicals who fail to read their—often coded, and highly figurative—responses accurately. Although Berman’s protagonist speaks in a lyrical voice, she also exhibits many of the outdated clichés about the mindblindedness of autistic people. In this sense, Me, Who Dove into the Heart of the World does little to challenge prevailing understandings (or misunderstandings) of autism, leaving the reader few options beyond bland acceptance of the “different abilities” promoted by Karen’s yellow label.

Despite lacking a theory of mind, Karen is what disability rights advocates call a “supercrip,” a person who compensates for disability with exceptional talent and ability. Well-known examples include Helen Keller, Franklin Delano Roosevelt, the actor Christopher Reeve, supermodel and athlete Aimee Mullins, and Olympic runner Oscar Pistorius. The problem with the supercrips is that their extraordinary accomplishments imply that disability is something to be overcome, rather than lived. Held up as role models, they make ordinary people with disabilities look pathetic and needy by comparison. By most standard measures, intelligence tests show Karen to be “somewhere between imbecile and idiot.” When Isabelle declares, “We’ll forget the 90% red, the disabilities, and we’ll bet on the blue 10%, the outstanding abilities,” Karen is a supercrip in the making. With Isabelle as her cheerleader (using language that seems plucked from a television afterschool special, she tells Karen, “Never let anyone make you feel like you’re less than they are. You’re not less, you’re different”), Karen becomes phenomenally successful, turning her unusual abilities into lucrative assets that save the family business and the town that depends on it, and revolutionize the tuna fishing industry in the process.

Over the forty years spanned by the novel, Karen never meets another autistic person. Historically, people with disabilities have been balkanized, treated either as isolated cases or classified according to symptoms, which left little grounds for, say, a deaf person to identify with a paraplegic or a person with cerebral palsy. That changed in the 1970s, when blind people, deaf people, wheelchair users, and those with chronic illnesses or mental and intellectual disabilities began to recognize shared experiences of prejudice and exclusion that would become the basis for an international movement for disability rights.

Neither Karen nor Isabelle knows anything of the movement for disability rights, nor does Karen’s success rely on any of the rights to access and accommodation that it has secured.

While the movement for disability rights has been more robust in the United States, Canada, and Western Europe, it has also been publicly visible in Latin American countries like Mexico, where it has often dovetailed with the discourse of human rights. Discrimination against people with disabilities is explicitly prohibited by the Mexican constitution, although such rhetoric often lacks concrete legislative backing. Neither Karen nor Isabelle knows anything of the movement for disability rights, nor does Karen’s success rely on any of the rights to access and accommodation that it has secured. Her only experience of other people with disabilities is a brief, unfortunate stint in a “special school” filled with “dwarfs and weirdos.” Instead of learning academic subjects, the students are taught to feel ashamed of their bodies. When another student pulls the tail of Karen’s favorite cat, she tells us, “I smacked the stupid Mongoloid in the head and he fell down, and I dragged him by 1 foot around the room like I was mopping the floor with him, despite the fact that he yowled like mad.” Karen’s violent disregard for the feelings of her classmates can be explained as the product of the school’s dehumanizing environment. But she has no opportunity to unlearn her hatred, or to form different, and more affirming, relationships with other people with disabilities. Instead, her success seems contingent on escaping association with others who are “mentally retarded or crazy, or crazy and retarded.”

The flip side of Karen’s rejection of other people (especially those with disabilities) is her profound empathy for animals. Like the well-known autistic animal scientist Temple Grandin (a likely model for Berman’s protagonist), she has an unusually intense identification with the animal world. Her intuitive understanding of fish, the most non-humanoid of animals, enables her to invent kinder, less violent ways to raise and slaughter tuna. In her animal husbandry courses, Karen learns the philosophical underpinnings of speciesism, which rests on Descartes’ influential dictum, cogito ergo sum. The idea that thought precedes being allows humans to elevate themselves over all other living creatures. Karen mounts a sustained protest against this philosophy, in favor of a more egalitarian appreciation of all living beings.

In its concern with the fishing industry, Me, Who Dove into the Heart of the World touches on some of the problems with the global food system: unsanitary and inhumane factory farms, the transportation of food over vast distances, and unsustainable agricultural practices. The problems with the food system, however, are not just about sustainability, but also about the imbalance of global power that gives the United States an unfair advantage. The Nieto family business grinds to a halt when the United States declares a boycott on Mexican tuna, which is seen by local politicians as an imperialist assault on Mexican sovereignty and traditions. Ironically, Karen saves the business not by defending Mexican nationalism but by going global, discovering a lucrative market among elite Japanese connoisseurs who will pay for fresh tuna raised and caught in optimal conditions and imported at great expense.

It won’t spoil the novel’s ending to say that Karen ultimately combats the problem of tuna fishing with a fantastically utopian solution that harms neither humans nor animals.

Even as it casts a critical eye on current practices for producing and distributing food, Berman’s novel also expresses skepticism about the movement for animal rights. A group called Clean Seas prompts the US ban on Mexican tuna, which threatens the livelihood of much of Mazatlan’s working population. Even after Karen comes up with more humane fishing practices, Clean Seas insists that the dolphins saved by the new methods are too stressed to reproduce. When Karen attracts international attention, she is attacked by a radical group called Animal Rights Militia that is willing to resort to violence and sometimes murder to carry out its agenda. Ironically, as much as these groups care about the rights of animals, they seem uninterested in the human consequences of their actions, which may lead to loss of jobs and, in the more dire cases, life. It won’t spoil the novel’s ending to say that Karen ultimately combats the problem of tuna fishing with a fantastically utopian solution that harms neither humans nor animals.

Me, Who Dove into the Heart of the World begins with the words “… the sea …” Its closing sentence is “If you’ll excuse me, I’m going to go get a glass of water,” which is also a refrain that runs throughout the novel. Thirst is the most primal of desires; the need for water is something all living beings share in common. Drinking satisfies basic needs but is also a form of communion, a gesture of incorporating the external world into the body. This is a fitting chorus for a novel that aspires to remind us of the way we are all connected. “In their relationship to nonhumans, civilized humans are all autistic,” Isabelle tells Karen, alluding to socialization processes that impede our communication with the non-human world. If not an accurate understanding of autism, her pronouncement nonetheless captures the novel’s effort to imagine a more fluid and empathic relationship between human and non-human environments, an ethics that would respect and value all forms of being. Karen often rails against Descartes for unleashing a philosophy that values thought over being. Instead she affirms the work of Charles Darwin, who recognized “the similarities that exist between all living beings.” Me, Who Dove into the Heart of the World is a novel that seeks out such similarities, inviting a reading strategy that is more experiential than analytic. Readers open to its pleasures and willing to bear with its limitations will find it welcome and refreshing. Like a glass of cool water.