How prosopagnosia was invented

Of course, like all histories of science, technology, and medicine, face recognition is not the story of scientists, or not just the story of scientists. It is also story of – as so many things are – stories. In this case, stories told by one of the master chroniclers of the human experience. Prosopagnosia is in part the story of a storyteller doctor-turned-patient discovering his own experience as a category and helping to call it into being. Neurologist and writer Oliver Sacks crafted a new kind of medical career by paying attention to the nuances of the individual in the data of the many. Among his prolific works is a 2010 essay in the New Yorker. Like some of his other writing, it's deeply personal, describing his own medical conditions, but unlike those works, he does not turn this one into a research project, a diagnostic mystery, or a reflection on doctor-patient relationships and empathy. It's more of an admission, a kind of coming out, though not his official coming out, which happened even later, in his 2015 memoir, after a life lived mostly celibate. In the New Yorker essay, Sacks wrote about his own face blindness, which he had lived with all his life but, like so many, came to understand only in middle age. 

When Sacks wrote about something, people read about it. And learned about it. And some, possibly even 1–2 percent of the population (unlike so many other, far less common conditions that he chronicled) might recognize themselves in it. As we review Sacks's writing, we will go back in time to learn about the medical, institutional, and media structures upon which he was building as he learned that he was not just an occasional and sometimes temporary patient. 

We will also consider the invention of a category – developmental and acquired prosopagnosia – and how it entered the diagnostic and documentary record as well as general consciousness. Prosopagnosia did in fact go from describing an n of 1 to describing 1–2 percent of the population. And the process both took a very long time, and happened very quickly, as we'll discover. The invention of face blindness as a category of knowable experience in the first decade of the twenty-first century (and beyond) made it recognizable, labelable, and applicable. It became a syndrome, a syndrome with a name, even without a clear singular crisis, a before of recognition and an after of lack. Instead, it gave shape and definition to a whole lifetime of crises that until then had been invisible. Oliver Sacks is part of the story as to why. So is the media more broadly, as is a shifting sense of what counts as diagnosable and whose conditions matter. And, of course, when you have an n of more than 0 and despite the importance and value of the individual case – more than 1, something is not just an anecdote or a story or an exception: it's a research agenda. Or it could be, if enough people with enough privilege and access and status and organizational skill care to make it so. 

Physician, Describe Thyself 

You probably know who Oliver Sacks is. It's likely you've come across his work in one way or another. Did you see the 1990 film Awakenings, starring Robin Williams? The film is based on Sacks's 1973 book of the same name, chronicling his transformative success in using the drug L-DOPA to temporarily awaken people with encephalitis lethargica, the so-called neuro-logical "sleeping sickness" that leaves those affected motionless and speechless.  A prolific and moving writer, Sacks came to public attention with his rich writings that focused on empathetic studies of people with neurological disorders. He followed Awakenings with A Leg to Stand On in 1974. The series of articles in 1985's The Man Who Mistook His Wife for a Hat became perhaps his best known written work, alongside his frequent contributions to the New Yorker, the New York Times, the New York Review of Books, and the London Review of Books.  By the time the film version of Awakenings was released, Sacks had become, in the words of literary critic Anatole Broyard, "a kind of poet laureate of contemporary medicine."

There are a lot of hagiographies of Oliver Sacks. There are also, of course, critiques, and they are powerful and resonant. In reflecting on Sacks, artist and disability designer Sara Hendren wrote movingly about the fundamental challenges of writing about medical cases. How, she wondered, could she avoid musing on, in Jenny Diski's terms, "how interestingly wrong we can go?" If Hendren wasn't quite ready to say, as disability theorist Tom Shakespeare did, that Sacks's work was a "high-brow freak show," and that Sacks was "the man who mistook his patients for a literary career" who "violates every principle of disability equity," she wasn't not ready to say that either. Sacks's heroic narratives of patients overcoming disability (or not) play into a number of problematic tropes that undermine the lived experience of being disabled; at the same time, Sacks's unerring attention on the patient-as-person made space for representing disease and disability as part of – and only part of – the whole. He was trained, first and foremost, as a doctor. Sacks brought attention and voice and advocacy to autism and face blindness and a host of other neurological conditions that have often been misunderstood, excluded, and ignored. Legacies are complicated. People are complicated. 

For literary critic Leonard Cassuto, Sacks was both empath and exploiter, at once a collaborator, a stagemaster, a cocreator, and a curator. Cassuto asked: "Was Oliver Sacks the P. T. Barnum of the postmodern world," collecting his patients' oddities and putting them on display precisely because of and for these differences? Cassuto answered himself: yes, and. For Cassuto, Sacks's method was evolving and collaborative, working with his patients to not just tell but insist on their stories. This was important to them; this was okay with them. Shakespeare critiqued Sacks's rendering of autistic scientist and activist Temple Grandin; Grandin discussed how Oliver Sacks inspired her and changed her life. People are complicated. Legacies are complicated. 

Sacks was much beloved by both his patients and his audiences across print and screen. In addition to his compelling prose and gentle touch, Sacks's work was interesting. He revered the brain as "the most incredible thing in the universe" and saw his practice with it and journey to learn about it as one of life's great adventures. And he was a man who had many adventures.

Among the important neurological approaches that Sacks brought to light, his continued emphasis on the individual patient, the specific case, the lived experience of one person was particularly noted. Jenny Diski pointed out the difference between stories and case histories: stories have narratives and conclusions. Case histories don't. Sacks, she insisted, was writing stories, acting as author rather than doctor in his text. His audience was (mostly) not medical, and it was not meant to be. Much of his prose considered the after- the-fact, once he'd already found the answers, such as they were. His patients were on display because of their diseases and conditions. That's why they were there. That's what his audience was reading for. But while Sacks was writing in stories, he was a practitioner of what historian John Forrester called, as we have seen, "thinking in cases." For Forrester, this was the great innovation of psychoanalysis; for Sacks, this was the great responsibility of all clinicians and caregivers. The unit of analysis for Sacks was always one. 

It wasn't just about empathy for Sacks, though that was a huge component of his practice. For Sacks, listening – truly listening – was treatment in and of itself, but also diagnosis: when it came to the weird and wonderful world of the quirky brain, Sacks was able to learn what he learned and know what he knew because he paid attention. A psychobiography reading might posit that Sacks was drawn to narratives and the word and the brain and listening precisely because he could not see faces or people, so he heard them instead. In his writing we see a longing to bridge worlds, even as we are always reminded that he was trained as a doctor and not a humanist of the lived experience. He described people; he listened to them; but he did not, it turns out, listen to himself, despite his long experience as an analysand. For much of his life, he discounted his own lived experience. He was the doctor, even when he was the patient. But he was an empathetic and caring doctor. People lined up to work with him, not just because he was, eventually, famous, but because when it came to the unexpected and unusual, Sacks was especially good at his particular and very personal job. 

And it became more personal. In the middle of his career, Sacks-the-doctor became Sacks-the-patient, but not because he was getting older and sicker. That, as Sacks recounted in a New York Times article about his terminal cancer diagnosis, happened in 2015, as it will happen in some form or other to most of us who get older, and who all eventually die. It's a precept of disability theory that we will all, if we live long enough, become disabled. For Sacks, the disabilities happened sooner. Or rather, the disabilities were always there. It took him until middle age to name them and to experience them as such. But Sacks's neurological differences had always been there. And for a long time, he didn't even know. Awakenings aside, Sacks's public-facing methodology focused far more on description and diagnosis than treatment (and possible cure). We would not say to Sacks, "Physician, heal thyself," but we might have said, "Physician, describe thyself." It is striking that on the topic of face blindness, for the longest time, he did not. 

Or is it? In failing to recognize his own face blindness until a trip to Australia to visit his brother in his sixties, Sacks, this narrator extraordinaire of the human condition, this detective of difference, this physician who among all others had the most finely tuned instrument of listening and seeing and then knowing, was just like everyone else. Sacks did not know he was face blind because he didn't recognize face blindness as a category. Almost no one did. Because as a widespread category, it wasn't invented yet. 

That's the thing about keeping track and naming names: something never hits the documentary record if there is no crisis. Without a crisis, there is no category. And if you could never recognize other people, then there is never a crisis. There's "just" life, in all its challenges and complexity. People born face blind never had a crisis. They never had a break or change. So that form of face blindness took longer to recognize. It's no surprise that acquired prosopagnosia – face blindness that people got after a traumatic brain injury or fever –came first. "Befores" and "afters" are quite useful for category creations. But that in and of itself was not enough. People were getting fevers and experiencing the consequences of infection for thousands of years before "face blindness" became a condition with a name. Some of these once fevered people could once recognize faces and, following the fever or other crisis, could not. Whether the condition was named, it was, experientially, known. The people who could never recognize faces at all had no crisis and had no record. Their experience has no name. Even that most practiced of observers of the human condition, even he who devoted a career to putting the unsual and uncanny and unnamed on display – to marvel, to appreciate, to gawk, to empathize, to study, to know – did not know this. Not in others, and not, for a long time, in himself. 

And then Oliver Sacks became the story himself. What does it mean to go from being the one studying to being the one studied? Oliver Sacks – doctor, patient, storyteller, subject of stories – is a powerful way to enter this particular narrative that chronicles how something that may have always been there became a thing to be known; a case; a diagnosis; a condition; an identifiable way of being in the world. He played with this question almost obsessively in 1970's Migraine about a chronic but intermittent condition. Sacks's account was both clinical and personal; it combined the neurological and the experiential meaning of migraines. As an account, it was possible because migraines as a phenomenon were already known; here, he was explaining and describing rather than discovering. Sacks returned to the theme of physician-as-patient in 1985's A Leg to Stand On, in which he explored what it meant to need – and only sometimes get – medical empathy from the position of the patient. His leg condition – also, it turns out, a type of agnosia – was only temporary, and one he was able to tackle from a research perspective as well as an experiential one; this is a very different kind of patienthood. Prosopagnosia (so far as we know) is forever. 

Sacks was one of many people with face blindness, and even one of many famous people with face blindness. His was not the first prosopagnosia case to be written about, but he may be the first one to write about himself, and doing so was consistent with his character. He wrote; therefore he was. He wrote about himself; therefore he was, in a way, someone new. Writing calls stories, and people, and, sometimes, categories, into being. And in so doing, Sacks helped prosopagnosia become not just an occurrence of a case or two, but a population-level condition. Even without a crisis. The unit for Sacks was always one, but he helped make himself one . . . of many.

• Adapted from Do I Know You?: From Face Blindness to Super Recognition, by Sharrona Pearl. Copyright 2023. Published with permission of Johns Hopkins University Press.