Tuesday, December 27, 2011

I Am Prosopagnosic

Public becomes personal. Since I have decided to allow a photojournalist to print my story in the New York Times, I have decided this is a good time to go public with at least one of my disorders, Prosopagnosia. Here is the note I sent to my friends and acquaintances, directing them to the story, and more importantly, the video on the NYTimes web site. Its like sitting at the top of the first and tallest roller coaster ride hill, poised to pour downward into what you know will be series of ups and downs. Its freeing and scry to tlk about this. Here we go . . .

 Link at bottom of page. Check out the video especially. My dog and boy
 are in it.

 For those of you that do not already know, here it is in the NYTimes
 today, Tuesday. For as long as I have known you, I have had
 Prosopagnosia and Topographical Agnosia, or Topographic Disorientation
(you'll have to look that up, too much too explain). This may explain
 some awkward situations during our interactions, but most likely not.
 I have spent most of my life lying and denying to hide these deficits.
My online support group (we would never meet face-to-face in a
 physical support group) has convinced me that all Prosopagnosic's
lives would be easier if more people knew about it. I have always been
reluctant to bring it up, preferring to make excuses and pretend I
 know people.

 I do have very good coping skills, so I can often figure people out.
 Contrary to the article in nytimes linked to my article, I have
extremely good voice recognition skills. I also use physical stature,
body movements, gait, etc. to identify people. I have had a lot of
 practice, and if all else fails, I just act like I know you, and fake
my way though the conversation.

 The preferable situation is that I "come out" in this fashion, tell
people my problem, and they identify themselves when they see the
blank look on my face. You have to look quick though:)

For those of you who have trouble remembering names, you are in good
company. 80% of Americans report trouble remembering names. I, on the
 other hand, am great at it - a coping skill I guess. The researchers
 estimate 2% of the population have Prosopagnosia. I could go on and on
about this, but there is more info links and articles on my blog

 Please feel free to forward this link to others. The more people that
 know about this, the better. Also, feel free to ask all the questions
 you want. It is hard for me to bring up this subject, but I could talk
 all day about it to interested people. It is fascinating and strange,
 even to me, even after all these years.


 Here's the nytimes link:

 The video link is on the same page, and is more in depth on me and
 living with Prosopagnosia or PA as we say.

Tuesday, November 15, 2011

Gene Weingarten - Losing Face

Ask my husband G, this conversation has taken place during most every movie we have ever watched. This is why I do not like to watch movies alone, there is no one to clue me in.

This is an old post, but just came to my attention.

From the Washington Post,  Gene Weingarten - Losing Face:

'via Blog this'

Losing Face
Gene gets no recognition
By Gene Weingarten
Sunday, March 16, 2008 

This is what it is like to be at the movies with me.
Me: Is that the same guy who was in the last scene, with the girl?
Wife: Yes. Shh.
Me: But he had a beard in the last scene.
Wife: No, he didn't. Shhh.
Me: Are you sure?
Wife: Shhhhh.
Me: (Sulk.)

Wife: Listen, you idiot. It's Tom Cruise. The same Tom Cruise who was in the previous scene. It's the same one who will be in the next scene. It's the same one who had Renee Zellweger at hello in the last movie when you forgot who Tom Cruise was, and, yes, by the way, that was Renee Zellweger, not Kirsten Dunst, who looks nothing like Renee Zellweger and would not be confused for Renee Zellweger by anyone but you, okay?

Stranger in next seat: Shhh.

I have trouble recognizing and remembering faces. It is a mild form of a disorder called prosopagnosia, which in its most extreme form can cause you to look in a mirror and not recognize the person looking back at you.

My face-recognition dysfunction is pretty minor, but it is severely tested when watching a movie, a circumstance where you are suddenly presented with many unfamiliar people interacting in complicated ways, and you must learn to quickly tell them apart. I'm okay if a character has some dramatic distinguishing characteristic, or speaks in a distinctive way -- I was just fine with the Wicked Witch of the West -- but if the characters seem to be random assemblages of run-of-the-mill noses and eyes, lips and ears, I am in trouble.
In men, there is a certain intense, generic look that particularly confounds me. I cannot distinguish Liam Neeson from Ralph Fiennes from that guy who played Ingrid Bergman's goody-two-shoes husband in "Casablanca." All the same fella, far as I can tell. Also Jimmy Stewart and Gary Cooper.
With women, my problem is blondes. Renee Zellweger and Loretta Swit and Kirsten Dunst and Gwyneth Paltrow and Lana Turner. Same lady.

When watching the Oscar-winning film "The Departed," I could not reliably distinguish Matt Damon from Leonardo DiCaprio, which proved to be a significant problem, because one was a good guy masquerading as a bad guy and one was a bad guy masquerading as a good guy. By the end of the film, many people were deceased, but I had no clear idea about who had done what to whom, and why.

Outside of the movies, I'm mostly okay, though I don't believe I have ever in my life, once, been able to recognize someone out of context, and that can be an embarrassing problem. Do you know that risque two-people-meet-in-a-supermarket joke with the punch line, "No, I'm your son's math teacher"? Well, I am that guy. Feel free to Google it.

Here is the worst thing that ever happened to me because of my condition:
Sometime after being hired as an editor by The Washington Post, I realized that a certain writer at the paper -- one of the people whose work I most respected -- detested me. I never talked to him about it because there didn't seem any point. It wasn't until years later that I learned from a third party what had happened. When I was being interviewed for the job, this man had gone out to lunch with me. We had talked deeply and richly about subjects of mutual interest, and he had given a glowing report back to management. I was hired, at least in part, on the basis of his recommendation.

But when I arrived at the newspaper a month later, I passed him in the hall -- many times -- and never thanked him or even acknowledged him. He concluded, with ample justification, that I was a total jerk. The fact is, I had no recognition of who he was, and by the time I figured it out, the damage was done.
To the guy in question: I'm really sorry, and I hope you recognize yourself from this anecdote. If it helps, you're the one who looks kind of like Sean Connery. Or, possibly, Dustin Hoffman.

Gene Weingarten can be reached at weingarten@washpost.com. 

Friday, November 11, 2011

MApping Charlie: A Mystery Novel

A great new book has been published by author Jane Meyerding. Its called Mapping Charlie, and it features a character who is Faceblind. While the book is fiction, it gives uncommon insight into the life of someone who is Prosopagnosic. Below is an excerpt from a fascinating interview with the author Jane on the Washington Times website:
Meyerding has been a writer for many years, although she has mostly written non-fiction essays, some of which you can find on her website at http://www.planetautism.com/jane/index.html. In 1994, a small press published a mystery novel she wrote, in a process that Meyerding describes as "exceedingly painful," which is one reason she chose to self-publish Mapping Charlie.
Face blindness is obviously a personal subject for Meyerding, considering that she experiences it daily. She's never pursued a diagnosis ("I guess it's just too obvious to require confirmation," she comments.) for her prosopagnosia, but she says that learning about it was a revelation.
"Other people really could recognize each other right away," she says about her wonderment in learning of face blindness. "They weren't just pretending better because they had better social skills, and there really is a part of the human brain to handle that function—except that my brain simply doesn't."
She goes on to say  that knowing about faceblindness helps because, "You realize you don't have to choose between 'I'm lazy' and 'I'm crazy,' and you can meet others online or elsewhere and share strategies for dealing with the face-sighted majority.
Meyerding's character Kay has to do exactly that in Mapping Charlie. Her faceblindness leads to her becoming a suspect when a college classmate of hers is murdered. Unbeknownst to her, because she didn't realize he was the same person, Kay is the last person known to have spoken to him, after running into him on a city bus.
This is not only a good book for prosopagnosics and those wanting to understand more about how they function, it is a fantastic read in general!
Mapping Charlie is available from Amazon and Lulu.com. Keep up to date on Meyerding's work and publishing schedule on her website at http://www.planetautism.com/jane/index.html

Thursday, October 6, 2011

Six ways to never get lost in a city again

Many people now rely on their smartphones, sat-navs or other GPS devices to find their way around. But when these fail us, and there's no-one to ask for directions, there's a more natural way to navigate, says Tristan Gooley.
It's not every week that a massive solar flare knocks out the GPS network, but all it takes is a flat battery or a mechanical fault to hobble your automated orientation aids.
And if there's no-one around to ask and no paper map on hand, you could be in trouble.
Natural navigation may be just what you need. This involves working out which way to go without using maps, compasses or any other instruments. It relies on awareness and deduction, so does depend on retaining some awareness of direction throughout each journey.

1. TV satellite dishes

Satellite dishes on homes in a Welsh townLook for satellite dishes and signs of weathering
These really are the "get out of jail free" cards in an urban area.
This is because the dishes point at a geostationary satellite, one that stays over the same point on the Earth's surface.
In the UK there is a dominant satellite broadcaster, hence nearly all the dishes tend to point in the same direction - close to southeast.
The same applies in rural areas - especially those blessed with pubs screening sport.

2. Religious buildings

Aerial view of a churchEast is east
From earliest times, religious buildings and sacred sites have been laid out to give clues as to direction.
Christian churches are normally aligned west-east, with the main altar at the eastern end to face the sunrise. Gravestones, too, are aligned west-east.
To find direction from a mosque, you need to go inside and look for the niche in one wall, which indicates the direction for prayer. This niche, known as al-Qibla, will be the direction of Mecca, wherever you are in the world.
And synagogues normally place the Torah Ark at the eastern end, positioned so worshippers face towards Jerusalem. (Synagogues in countries east of Israel will face west.)

3. Weathering

Start Quote

Tristan Gooley
I teach people to find their way using only the sun, stars, moon, plants, animals, weather and buildings”
Tristan Gooley
The prevailing winds carry rain and pollution. These then hit the buildings, leaving patterns.
The wind comes from the southwest in the UK more often than from any other direction. This results in asymmetrical weathering patterns on buildings - similar to the erosion seen in nature.
Look up, above the cleaned glass and metals of the lower floors, to the natural stone or weathered bricks higher up.
Notice how the building's corners all show subtly different weathering patterns.
The contrast between southwest and northeast corners is the greatest. But the shifts in colours, where the rain and pollutants have left their mark, can be read on all sides with a little practice.
Trees, too, indicate direction, with the very tops combed over by the prevailing wind.

4. Flow of people

Commuters leave Waterloo Station, LondonRush hour crowds point the way
Pacific navigators learned to follow the birds in their search of land. They quickly realised that while an individual bird can behave eccentrically, a pair - or even better a flock - will follow a pattern.
The same is true of human beings. There is no point following an individual, you could end up anywhere. But following a crowd in the late afternoon will take you towards a station or other transport hub. In the mornings, walk against the flow to find these stations.
At lunchtime in sunny weather, crowds move from office blocks towards the open spaces of parks and rivers.

5. Road alignment

Hot air balloon over BristolWind direction and road layout can help
Roads do not spring up randomly, they grow to carry traffic - and the bulk of traffic is either heading into or out of a town. So the biggest roads tend to be aligned in a certain way, depending on whether you are in the centre or on the outskirts.
In the north or south of town, the major roads will tend to be aligned north/south. In the northwest or southeast, they will have a bias towards northwest/southeast. This is why road maps of big towns show a radial pattern.
It is common sense, but very few people realise this when they feel lost in a big city.

6. Clouds

Edinburgh with clouds aboveLook up into the skies
One of the best ways not to lose your sense of direction is to hold onto it. My favourite way of doing this in a city is to orientate myself - using some of the clues above - and then note the direction the clouds are moving.
The wind pushing the clouds will remain fairly constant, providing there's no dramatic change in the weather.
This technique really earns its keep on underground journeys, especially to a new part of town. Simply look up before you head underground, and remember the direction of the clouds. When you emerge in a strange part of the city, look up again and you'll be able to work out which way is which from the clouds overhead.
Tristan Gooley is on BBC Two's All Roads Lead Home, which started Wednesday 5 October at 2000 BST - or catch up with iPlayer.

Wednesday, May 18, 2011

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

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

-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.

Friday, May 6, 2011

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

Thursday, May 5, 2011

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.

Tuesday, May 3, 2011

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.