avoiding the high-brow freak show

Oliver Sacks is probably the only author many people have read about disability at length. Sacks wrote many books with such a keen eye for description and also a literate, humanitarian lens—he was able to link together ideas in natural history, the sciences, and the humanities with sincerity and warmth, and always with people at the center. But which people? The subjects of the book, or the reader who is “reading” herself, her own experiences, as she takes in these stories? In any good book, many subjectivities are involved: author, characters, reader. But there’s some particular tricky territory in disability narratives.

It’s challenging to write about this subject for a mainstream audience, perhaps because there are so many well-rehearsed pitfall tropes in characterizing bodily and developmental differences. Descriptions of physicality, speech, or idiosyncratic movement can slide so easily into spectacle. And revealing the ways that disabled people* cope, make sense, and create joy and humor in their lives can collapse into inspiration, easily won.

I’m thinking about Sacks as I write my own words, interpreting my own many encounters with disabled people in a way that both engages readers for whom the subject is ostensibly new, and that also does justice to the integrity and singularity of those people involved. I’m trying to write about disability and its reach into the wider human experience, that is, without making individual people into metaphors. Now: those ideas might be laudable—interdependent life, a critique of individualism, all bodies and lived experiences as endless variation, necessarily incomplete in their own ways—but they are ideas nonetheless. How to make this tradeoff? How to help the uninitiated reader by saying See, see here, your life is caught up in these stakes too, but without flattening the individual subjects on whom those ideas are based?

I keep circling around this review in the LRB of Sacks’s An Anthropologist on Mars and The Island of the Colorblind—analysis of which includes his book Awakenings and could also be applied to The Man Who Mistook His Wife For a Hat. Jenny Diski admires Sacks’s projects and his craft, but she also has this to say:

“A story needs a conclusion whereas a case-history may not have one. In fact, stories have all kinds of needs that a case-history will not supply, and Sacks is insistent that he is writing the stories of his patients, not their cases. This is not intended to fudge fact and fiction, but to enlarge patients into people.

On the other hand, he is describing people with more or less devastating illnesses— that is his raison d’être—and his explicit purpose is to generalize from these, usually unhappy, accidents of life and nature, to a greater understanding of the human condition. In Awakenings he states: ‘If we seek a “curt epitome” of the human condition—of long-standing sickness, suffering and sadness; of a sudden, complete, almost preternatural “awakening”; and, alas! of entanglements which may follow this “cure”—there is no better one than the story of these patients.’

He is offering life, death and the whole damn thing in the metaphor of his patients. And it is true that these patients and others show us what it is like, as he says, ‘to be human and stay human in the face of adversity’. But metaphors are not in fact descriptions of people in their totality. They are intentional, and consciously or unconsciously edited tropes, not complete, contained narratives.

I don’t know any kind of narrative, fictional or otherwise, that can present people in their totality, so perhaps it doesn’t matter, but Sacks is offering us people because of their sickness and the manner of their handling it. This is hardly an overturning of the medicalizing tendency of doctors. And when we read these stories, as we do, to tell us more about ourselves, we read them as exaggerations of what we are, as metaphors for what we are capable of. Their subjects may not be patients as freaks, but they are patients as emblems. They are, as it were, for our use and our wonderment. Around their illness, the thoughts of Leibniz, Kant, Kierkegaard, Nietzsche and Proust are hoisted like scaffolding, as if to stiffen their reality into meaning.”

Stiffening their reality into meaning! It’s a cutting and exact criticism, especially when it seems that Sacks was utterly sincere in his search for human and humane connection—with these patients as clinical subjects and in his engagement with readers.

Diski hints at the pushback Sacks got from scholars in disability studies, too; scholar Tom Shakespeare took a swipe at him as “the man who mistook his patients for a career,” calling his body of work a “high-brow freak show.” And when I re-read Sacks’s New Yorker essay, excerpted from the Anthropologist book, on autistic self-advocate Temple Grandin, I see a little bit what Shakespeare meant. There is something of the microscope being employed in that encounter, and somehow we walk away fascinated but maybe less than conjoined to Grandin’s experience. It’s rich with connection and with pathos (in a good way!), but there’s distance in it too. So—it’s not perfect.

And yet: people read and loved that book, saw themselves in it. And Grandin went on to write several books in her own voice, to have a wide audience for her work and wisdom. The visibility of autistic self-advocacy has been greatly amplified since Sacks’s writing about it. (And yet—also—Diski says that Sacks has a way of making meaning out of disability that’s essentially a wonder at the human body via its ailments, as in “My God, we are extraordinary, look how interestingly wrong we can go.”) Is there a way to affirm the extraordinary without ending at: there but for the grace of…? Without ending with gratitude that we don’t share someone’s plight? I want readers to come away uncertain: about where there’s joy and where there’s pain, about how they might make different choices, ordinary and extraordinary choices, if handed a different set of capacities in themselves or in their loved ones.

But can a writer really calibrate that level of nuance? Lately I’m thinking that I can only write what I can write, knowing that it will be incomplete and partial in its rendering.

I want a world full of disabled voices, people telling their stories in their own ways, with their own authority intact. But I also want a world of people to read about the collective stakes inherent in disability—and not just the rights issues that are being ignored, urgent as they are. I want people to see that spending time thinking about disability is an invitation to see the world differently, and to locate one’s own experiences differently. Not to erase the particularity of any one person’s very material conditions, but to help remedy the invisibility of disability outside the inner circle of people who talk to one another, who know that these issues are important. And some audiences will need some interpretation, some cognitive-linguistic bridges to understand the import of disability—its wonder, its overlooked importance, and yes, even its lessons, if we may call them such. Lessons without moralizing, lessons without abstractions.

*Yes, “disabled people,” not “differently abled” or even always “people with disabilities.” There’s no one right answer or moniker, but soon I’ll write a short piece on why “disabled people” is a preferred term among many activists.