Researchers are moving away from calling the mysterious disorder that affects me and an estimated 2 percent of the population "face blindness." I'm not blind. Blindness in this case is a metaphor. In fact, the disorder affects perception, not vision. The name "face blindness" is confusing for people. I am often asked, "What do you see when you see a face?" I don't know. I suppose I see what you see in the mirror - eyes, nose, mouth - when I'm looking right at you, that is. But only when I look at you. I have no ability to retrieve an image of the human face stored in my brain. I have no access to the images, so no working memory, short term or long term, of any human face I've seen. Not my own. Not my mother's, or husband's, or Obama's. (Who I am unable to recognize unless he is standing in front of the White House, or there is a caption.)
Prosopagnosia comes closer to the mark. It is made up of two Greek roots, prosopon, face, and agnosia, doubting. However, prosopagnosia is a gangly word almost no layperson feels confident pronouncing.
I'm not blind to faces. And I don't exactly doubt what I see. But I do doubt my own perception, regularly, because I'm wrong so often, so drastically-failing to recognize my best friend, my department chairperson, my stepchildren. So I taught myself to pronounce prosopagnosia.
When I talk about the disorder, I use both terms, face blindness and prosopagnosia, even though one is a misnomer and the other a mouthful. The disorder isn't easy to understand. Being forced to explain the unwieldy, wayward terms that are supposed to define it has an up side (just like face blindness itself does-a subject I'll talk more about in an upcoming post). These clunky terms slow the conversation down, and provide a teaching opportunity for which I've learned to be grateful. The truth is, it takes awhile to understand every disorder. Face blindness doesn't mean that sufferers can't see faces, any more than dyslexia means "inability to read." I don't mind that the door to discussion open slowly and with some effort. The naming confusion creates a pause, and a pause, when you are learning, can be useful.
That said, I wish there was a handy term. Recently, researchers asked me and other prosopagnosics to help design a new word to describe the condition accurately, but nothing quite right has emerged to date. In my opinion, the perfect name would be more like dyslexia -- four syllables max, for portability, for media-friendliness. But dysfacia sounds like demolition. I'd like a word that indicates that the problem we are talking about is more like a learning disability, a challenge, something that is not pathology but part of the range of being human.
For now, face blindness. And prosopagnosia.
When I'm in one of these introductory conversations, the person I'm talking to invariably asks, "When did you find out you had this?" And I tell them: at midlife. A stunned pause. Then: "How could you go for so long not knowing?"
It's an excellent question, one I've written a book exploring. How do we know what we know? I am still learning about perception, vision, and awareness. The story is fascinating and complex. For me, the question really isn't how could I not know, it's how on earth I could have known.
For in my case, given the circumstance of my extraordinary childhood, to recognize my own prosopagnosia would have required a sophisticated self-awareness; an in-depth understanding of paranoid schizophrenia and bipolar disorder, child psychology and family systems theory; years of excellent therapy; and an advanced degree in the neurobiology and neuropsychology of vision and perception.
None of which I had. Some of which I've come to.
Next up: how you can not know your whole life.