Jacob Hodes lies on the couch watching old reruns on television. It’s his roommate Sonny Singh’s turn to cook dinner tonight, and their Brooklyn apartment fills with the aroma of Indian food.
As Singh bangs around in the kitchen, Hodes talks about a party he attended recently. “CUNY J-School parties are the worst, I don’t recognize anyone,” he says.
Then he guffaws and glances back at Singh. “I don’t think I could ever miss you on the street, man.”
Singh runs his fingers through his long beard. “Yeah, the turban makes it difficult to forget, huh? Unless, of course it was Sikh Day Parade.”
There’s a knock on the door and Singh lets in a young woman.
“Hey,” she says.
Hodes pretends not to notice. He sinks deeper into the couch and keeps his eyes on the television. She walks into the kitchen, unaffected, and chats animatedly with Singh.
Hodes’ other roommates come out and embrace the woman. “I think I’m supposed to know who she is,” Hodes whispers once she’s out of sight. “ But I don’t recognize her at all.”
Prosopagnosia, or “face blindness,” the disorder that has plagued Hodes since he was a child, is the inability to recognize faces that should be familiar. Some patients’ impairment influences only the recognition of faces; others find their deficit extends to the recognition of other objects such as cars and animals.
While anyone can have trouble recognizing faces and names, prosopagnosics can’t even identify their own parents and relatives. They rely on non-facial information like hair color, gait, and tone of voice to distinguish people.
Prosopagnosics often complain that they have trouble following movies or television shows, because they cannot recognize characters and keep up with the plot.
Many also report problems with other aspects of face processing: They find it difficult to judge age or gender, recognize emotional expressions, or follow the direction of a person’s gaze. A substantial portion report navigational difficulties, because their sense of direction is impaired.
Though researchers have sought cures, no therapies have demonstrated lasting improvements.
“While there have been transient benefits, there has been nothing else that has made a real impact,” says Garga Chatterjee, currently pursuing doctoral research in prosopagnosia at Harvard.
There are only about 100 documented cases of prosopagnosia in the worldwide medical literature. Yet scientists at the Prosopagnosia Research Centers at Dartmouth College, Harvard University and University College London are questioning whether the condition is actually that uncommon. “2.5 percent of the world’s population has the disorder. That’s one person in every 50. That is not rare at all,” Chatterjee says.
In 2004, researchers at the Institute for Human Genetics in Germany gave 576 biology students a prosopagnosia screening questionnaire and found that nearly two percent reported face blindness symptoms. Scientists at the Prosopagnosia Center in 2006 also reported, after testing 1600 individuals, that about two percent of the general population may have prosopagnosia.
In 2007, Glenn Alperin was flying from Atlanta to Boston. “I was reading a newspaper when this man came up to me and shook my hand. He went down the aisle shaking hands with all of the passengers,” Alperin recalls.
“I waited until he was at a safe distance and turned to the man sitting next to me and asked him who that was. The guy looked at me, horrified and said, ‘That was Jimmy Carter!’”
Dressed in a fishing hat and an oversized green jacket, Alperin has just finished his session at a day treatment center in Cambridge, Massachusetts
He makes his way to the subway station, carefully deliberating which train to take to Brookline, where he will tutor his first student of the day.
“I don’t look at people until I am spoken to,” says Alperin, who’s had prosopagnosia since infancy. He provides an interesting analogy: “Most people take a picture with their brain and store and develop the film. I take the picture, but throw the film in the trash immediately.”
Alperin’s mother Peggy recalls the time they discovered the disorder. “I remember we went somewhere and my eldest son’s voice had just started to crack and Glenn was having trouble telling his brothers apart,” she says. She then did some research, and doctors confirmed that Alperin did in fact suffer from prosopagnosia.
Peggy did her best to support Alperin after they diagnosed the disorder. She put alarms all over the house and if reporters ever visited his school, she wouldn’t allow his photograph to appear in the newspaper. She constantly fears that people may take advantage of his condition.
“I can’t say anything now, because he is a full grown adult, but he tutors and goes to people’s houses he doesn’t even know. God forbid if something were to happen, he wouldn’t even be able to identify the person,” she says. “I am a gardener and it is only now, at the age of 63, that I have allowed my work to appear in shows. When Glenn was a child, I was so concerned for his safety, I never showed my work to anyone.”
Researchers say prosopagnosia isn’t a unitary disorder, meaning that it is different for each patient. “Each prosopagnosic’s description of their experiences will be different,” Chatterjee says.
Most patients develop strategies for tackling the problem. They may note carefully the clothes someone is wearing, ask relatives to always wear a particular distinctive item, or learn how to initiate and maintain conversations while they figure out whom they are talking to. But such strategies aren’t completely effective.
Alperin’s mother would often test him as a child, hoping that would sharpen his mind. “My mother would keep changing her hairstyle and it would frustrate me because I couldn’t recognize her,” he says. “But now that both of us are older and she knows there’s no real cure for my disorder, she just ties her hair at the nape of her neck with one highlight running through her bun and that’s how I can identify her.”
Alperin grew up on Boston’s North Shore with two elder brothers who did their best to help him out. But with their similar features and flaming red hair he still had trouble telling them apart. Yet, he says, briskly walking through Brookline, his family was incredibly supportive.
“I would tell him, at his wedding, I would have to get the word ‘wife’ monogrammed on his wife’s dress, so he wouldn’t kiss the wrong girl,” Peggy recalls, laughing. “I had to prepare him to deal with the disorder and I wanted him to have a sense of humor about it.”
His father, who died when Glenn was 16, spoke little. “He never mentioned anything about my disorder,” he says. “It was only later that I learned that he was worried I would forget him. But I could never do that.”
Alperin rates the severity of his prosopagnosia a 9 out of 10. He finds it difficult even to recognize himself in a mirror. “I don’t like to take the time to see what I actually look like now, because I don’t care,” he says. At age 34, he is tall and lanky and keeps a long, red beard he constantly plays with.