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.


qatheworld said...

I also am good with voice recognition (along with looking for other clues) despite having prosopagnosia. In fact I rely fairly heavily on voices. I've had several occurrences where someone starts talking to me, and I KNOW that I know their voice, but I can't recognize anything else about them (unfortunately just recognizing their voice doesn't always remind me of who it is). However, it's often enough to go on. People with accents or distinctive voices are especially helpful, just as I tend to gravitate towards those with a specific "look" or signature clothing item (plus, voices, are harder to change, unlike a haircut that could completely throw me). I think if I had trouble with voices it would be a HUGE difficulty for me because it's often my main means of recognition, though I do use many other visual clues. However with the visual clues, I have to make a conscious effort to "notice" and remember them in association with that person, unlike with voices. It's not at all helpful when people have a very generic voice or a speaking affection though (like the "valley girl" speech). It can also be difficult on the phone, because (on some people more than others) it seems to change the sound of their voice. Luckily though they usually identify themselves in those circumstances (or with cell phones with a saved number, you can see who is calling). Wouldn't it be nice if people were as good about identifying themselves in person as they are on the phone? (I'm also not very good with names, unlike you, but I do remember the names of people I see frequently or have made a concerted effort to record in some way, so it does give more context to go with their appearance).

dori said...

Thanks for posting!
You brought up a great point. There is a big difference in effort level between PA's trying to pick out visual things to remember someone by, and NT's (neurotypicals) automatic grasp of faces. As you say, I don' "try" to remember voices, I just do. I assume it is that way with faces for everyone else.

dori said...

Thanks for posting!
You brought up a great point. There is a big difference in effort level between PA's trying to pick out visual things to remember someone by, and NT's (neurotypicals) automatic grasp of faces. As you say, I don' "try" to remember voices, I just do. I assume it is that way with faces for everyone else.

bill said...

great story got it in 2005 from a stroke I use voices to can you give me tips of people you just met voices aren't good then meet woman she leaves for a couple of minutes can't remember her same try looking for certain clothes or jewelry but with many around becomes confusingwith making friends don't want to sound like a loser but my self esteem and confidence are very low I tell people this they just tell me to stop complaining your not the only one with the problem I know this but they don't understand what it truly is my doctor told me to go online to find support with others with the same condition I wish there was a group or a person locally I could talk to

dori said...

There is a group! In fact 2 online support groups. One is open to people with Prosopagnosia and also those related to them or interested in it, such as researchers and doctors. It is a yahoo group:

The other one is a closed group open only to those who have it. http://home.earthlink.net/~blankface/folks.shtml

There is also a Facebook (ironic) page: http://www.facebook.com/groups/11808741970/

You are right Bill, most people cannot relate to this, because while you are not the only one with this problem, there are still so few people out there who have it and are willing to talk aboutit, that it makes you feel alone in this respect. It is certainly NOT the same thing as not remembering names, which is the problem people always equate it with.

I hope you make use of one or more of the links above, so you can start sharing your experiences with, and learning from, others.

robert perez said...

d's phone number even though I've used them for years. Thinking of names or terms directly seems to get blocked. I just read a note by one of the people on the net. She was wonderin if she could present a card explaining her problem. It seemed to be almost the same thing I tried a few months ago. It didn't seem to produce any good results. The condition seems so foreign to anything they can imagine that it seems to usually resul in:"Oh, I forget names too." A small paragraph seems impossible to fathom. When I meet them again I have to go through the whole thing again. I don't think one person has bothered to tell me their name again.