One Person's Thoughts on Living With Faceblindness

I am part of an online support community for Prosopagnosics. We have regular discussions about living with PA.  The entry in italics below was posted during a discussion on whether we think of ourselves as disabled or not.  For me, it depends on the day.

"When I went to bed last night I had a long think about how different
it is to not be FB.  I thought specifically of my friend down the
road, who is just over a year older than me and has similar
intelligence.

Here are some points:

My friend never meets someone in the village or the nearby town and
doesn't know if she's met them before or not.
She never has a conversation while trying madly to work out who the
other person is.
When someone comes into her shop she knows if they have shopped with
her before, and often she will remember something about what they have
bought previously.
She never gets confused watching tv, movie or theatre because some of
the characters look much the same.
If she leaves a crowded room, when she returns she can spot who she
was talking to before she left.
She has never confused two people because they have the same gender
and similar hair.
She has never had to wait until she's back home to have an "aha
moment" about who she was talking to earlier.
She has never worked with someone for an entire afternoon and then
failed to recognise them the very next day.
She doesn't suffer an extreme disorientation when someone close to her
radically changes their hairstyle.
If she went to school reunion she would recognise most of her
ex-classmates even though she left school more than 20 years ago!
She has never failed to recognise her own mother/sister/aunt etc
She has never stood waiting for someone only to find the other person
is waiting for her just a few yards away.

What this all leads me to think is that our state of confusion is so
normal to us that we don't actually know how extreme it is.  If my
friend was to suddenly become FB she'd be devastated.  Even when she
developed coping skills she would still look back with a sense of
intense loss.

Whether we call it disablity or not I think is just semantics.  You
could say the same about dyslexia - if the dyslexic person isn't at
this moment having to deal with reading or writing they are not
disabled in this moment, but they still qualify as disabled for
accommodations."
-Autiste Ruth
(thanks to Autiste Ruth for allowing me to re-post this)

The above statement in bold letters is as striking to me as a bang on the head. It reminds me that even when I think I am having a good day recognizing people, through the use of coping skills, I really have no idea if that it so.

Prosopagnosia, the science behind face blindness : The New Yorker

I've just finished reading Chapter four from Oliver Sacks' latest book, The Mind's Eye. It is his first person account of being prosopagnosic. Definitely worth a read, since it has a lot of good background information on the condition itself.

Here is the Abstract for the article he published in the New Yorker as a lead-in media piece. The great thing about it when it came out was the number of readers, in New York and elsewhere, who became familiar with PA.

Prosopagnosia, the science behind face blindness : The New Yorker: "ABSTRACT: A NEUROLOGIST’S NOTEBOOK about prosopagnosia, or the inability to recognize faces and places. Writer describes his own difficulties recognizing and remembering faces. He also has the same difficulty with places and often becomes lost when he strays from familiar routes. At the age of seventy-seven, despite a lifetime of trying to compensate, he has no less trouble with faces and places than when he was younger. He is particularly thrown when seeing a person out of context, even if he was with that person five minutes before. Writer gives several examples of his inability to recognize familiar people out of context, including his therapist and his assistant. After learning that his brother suffered from the same problem, the writer came to believe that they both had a specific trait, a so-called prosopagnosia, probably with a distinctive genetic basis. Mentions several other people who have the same trait, including Jane Goodall and the artist Chuck Close. Face recognition is crucially important for humans, and the vast majority of us are able to identify thousands of faces individually, or to easily pick out familiar faces in a crowd. People with prosopagnosia need to be resourceful, inventive in finding strategies for circumventing their deficits: recognizing people by an unusual nose or beard, or by their spectacles, or a certain type of clothing. Describes research done on the way the brain recognizes faces. Tells about the work of Christopher Pallis, Charles Gross, Olivier Pascalis, Isabel Gauthier, and other scientists. Above all, the recognition of faces depends not only on the ability to parse the visual aspects of the face—its particular features and their over-all configuration—and compare them with others, but also on the ability to summon the memories, experiences, and feelings associated with that face. The recognition of specific places or faces goes with a particular feeling, a sense of association and meaning. Briefly discusses déjà vu and Capgras syndrome. Considers the difference between acquired prosopagnosia—through stroke or Alzheimer’s for example—and congenital prosopagnosia. Discusses the work of Ken Nakayama and Brad Duchaine, who have explored the neural basis of face and place recognition. They have also studied the psychological effects and social consequences of developmental prosopagnosia. Severe congenital prosopagnosia is estimated to affect two to two and a half per cent of the population—six to eight million people in the United States alone.



Oliver Sacks, A Neurologist’s Notebook, “Face-Blind,” The New Yorker, August 30, 2010, p. 36

What's in a human face? on Vimeo

What's in a human face? on Vimeo: Almudena Toral made this slide show of a prosopagnosic New York man. She is the reporter who is working on the story for NY Times video, which this man James Cooke and myself will be in. It is short and very well done.

I like the fact that he explains that he CAN see faces when he is looking at them, something that isn't always understood about prosopagnosics, in part due to the fact that we use the slang term "Faceblind".
I feel that sometimes this does us a disservice as far as describing the condition, since, with rare exception, we can all SEE faces.

I also related to the fact that he no longer really pays attention to faces. Its sad but true that when you clean little information from something, it no longer becomes that important for you to look at, except for the fact that, well, it makes people feel important. I am sometimes made aware that because I am not watching a person's face, they don't think I am listening to them. Its a big thing for humans. On the other hand, I know if I stare at a person's face, I will get little if any valuable recognition information, but i will feel more accountable as far as recognizing them in the future after they see me paying attention to their face. That's not something I relish.

Story for New York Times

 Almudena Toral, reporter, videotaping at my house.

Most of the day Tuesday, I was videotaped by photojournalist Almudena Toral, a free-lance journalist who is doing a piece on Prosopagnosia (PA) for the NY Times. She is about as excited about having her picture posted on this blog as I am about outing myself through her video for the New York Times.
I notice many journalists are much more comfortable telling the story than being it.