Prosopagnosia...not a word one sees very often. As one of the world's few people who actually encounter it on a daily basis, I will attempt to explain it to you.
Basically, it means that I am unable to recognize faces. You might find this a little strange. You might be saying, "Unable to recognize faces...That's a new one. :)" After all, there aren't too many people who have the same condition. I'm not sure if this is a good thing or a bad thing. If everybody had a difficult time with recognizing faces, the world would be a much more confusing place. :)
Here is a small FAQ with my answers provided for you to get a clearer understanding of exactly what I'm talking about.
Additionally, many recent news stories prompted me to write an essay on a topic near and dear to my heart, and to the hearts of all people with prosopagnosia everywhere. That essay, "Are Uniforms Helpful or Hurtful to Learning?" can be found here.
1. What is prosopagnosia?
I guess I answered that already, but I'll do a little further explanation. Imagine that every person has a camera inside their head. Every time they meet somebody for the first time, they take a picture with their camera, develop the picture, and file it away for future use. When they meet the same person at a later time, they already have a record of the person which they filed away. They can compare the two pictures and say, "Aha, I know who that person is!" For me, I take a picture with my camera, but I never store it away.
2. You can see, right?
I have no trouble seeing things. Prosopagnosia has nothing to do with sight. It is strictly a problem with the brain. I have trouble remembering what I have seen before. This can, and often does, become easier if I have spent a significant amount of time with individual people. I tend to remember people better when I have something to associate them with, and the more time I get to spend with a person, the more likely I am to remember them.
3. Is it just faces?
No. I also have difficulty finding my way around places that I'm not very familiar with. I can hear you say ," Now wait a minute there. I have trouble finding my way around new places too." I doubt that it takes you three weeks to figure out your way around a college campus as I have managed to do. For those of you who are unfamiliar with Drew University, it is considered a small university.
(Since the creation of this web page, I have made contact with another prosopagnosiac who tells me that he does not have difficulty finding his way around. However, the conditions of his situation are somewhat different from mine in that he was born with the condition. I guess there is a genetic tendency towards prosopagnosia but the catch is that for those people who aquire prosopagnosia genetically, it tends to be handed down in varying amounts, whereas those of us who aquire prosopagnosia through an injury tend to get it in greater amounts. He just recently discovered that he had prosopagnosia after a long battle with stress from school and work which he, for a long time, did not understand. However, by his explanation to me, he also has some distorted hearing and therefore has had to use sight as a major part of his battle to deal with the world. I had once suggested among our discussions that I had often considered that the prospect of being blind instead of prosopagnosiac had crossed my mind as perhaps being an easier thing to deal with.( for a further explanation of this see the bottom half of question 9) He had vehemently disagreed on a personal basis because, without his eyesight, he would lose most of the information he is capable of picking up.)
Also, as an example, if you were to ask me to describe a bird, I would tell you that a bird has wings and most birds fly. However, if you asked me to describe a robin, I would have a very difficult time.
I am able to remember the BIG details but I usually miss the smaller ones if they are not pointed out to me. Along those same lines, I will often miss important pieces of conversation because I am not neccesarily able to see the facial expressions which are a large part of the interaction between people as they converse. A short glance without moving ones head, or a brief smile might be things that I would miss entirely in casual conversation. However, if somebody were to wave at me, I would probably see it because it is a big movement.
4. I know what you mean. I can't recognize faces either.
I have encountered many people who have great difficulty with remembering names. However, there are very few people who are unable to recognize faces. Names and faces are two distinctly separate entities.
5. How did you get prosopagnosia?
My mother recounted the story to me much as I tell it to you. When I was 16 months old, I'm told I was a very agile child and that I had a tendency to move around a lot. This included climbing on things. I was in my crib when I "decided" that I wanted to climb over the edge. I fell off of the crib and onto the floor, cried, roled over, and stopped breathing. By this point in time, an ambulance had been called for and my mother was receiving instructions on how to perform CPR on an infant over the phone. She had been trained in CPR before but was unsure how to apply it on an infant. The ambulance came and took me to a local hospital where I was stabilized before being moved to another hospital where I was in a coma for six weeks. Fortunately, I survived to tell about it. According to the material that I have read regarding head injuries, once a person is in a coma, chances are very slim that they will survive. I am a very lucky person.
6. Is prosopagnosia curable?
The answer to that question is no. Do I wish it was curable? I can't say that I don't. However, the reasons I give might surprise you. See question number 9 for an explanation.
7. Doesn't having prosopagnosia bug you?
No, but it used to bug me a lot. I went through a stage where I truly believed the world was out to get me. Don't get me wrong...I still believe the world is out to get me, but the difference is that I expect certain things to happen and I am no longer surprised when they do. An axiom that I see often and live by goes as follows: If you are different, then you are bad. I have evolved into a pessimist by nature.
What really bugs me is when people don't ask me questions either because they think they already know all of the answers or because they don't want to "pester" me with questions. I am more than willing to answer questions.
8. How do you cope with it?
I think part of the answer to that question is that I don't ever remember being able to recognize faces. I had to relearn everything from scratch after I came out of a coma, but I never experienced the sense of loss and frustration that I hear is so common in similar situations where the person is significantly older than I was. They knew what they could do before and are frustrated that they were no longer able to do the things that they had always done. I had the time to " rework my wiring" and I never believed, until I tried enough times, that there was ever anything that I couldn't accomplish.
9. What questions would REALLY annoy you?
When somebody asks me "Whats my name?" Its almost like people don't want to believe that I have this little quirk and that I am simply unable to recognize them. People want to believe that I will "get better" and that I will somehow miraculously be able to recognise them.
I spent a lot of time contemplating the differences between my condition, prosopagnosia, and blindness. For one thing, decent people do not approach a blind person and ask them "How many fingers am I holding up?", a question which is impossible for a blind person to to answer. However, it never occurs to these same decent people that my condition, albeit a little different from being blind' is just as annoying to me when they ask "What is my name?"
I have a close friend who gave me a very good book entitled Touching the Rock by John M. Hull. It is a book which autobiographically describes a sighted person who gradually loses his sight in mid-life and manages to adapt to it very well. There were three or four sections of the book that I could have written with the exact same words that he did to apply to my situation.
I have often wondered if it wouldn't have been better if I had been blinded for life due to my injury instead of having to deal with the multifaceted complexities of prosopagnosia.
10. I have never heard of prosopagnosia before; are there many people like you?
Unfortunately for me, but probably fortunately for you, there aren't very many of us prosopagnosiacs around. :) I understand that there are other people in the world similar to my age who have prosopagnosia. I would like the chance to get to meet them sometime. I'm sure we would have much in common.
After having read this, you might imagine that having prosopagnosia has had a large impact on my life. You would certainly be correct. Not only has it had an impact on my life, but on my outlook at life and in particular, my writing. If you want to see some of the pieces I have written, please follow this link to my poetry page..
Since the creation of this page in October of 1996, I have come into e-mail contact with many other people who have prosopagnosia. While we do have many things in common, I feel that perhaps the most interesting part of discovering these people is that we also have many things which are totally seperate from each other. Even the characteristics of people which we use to attempt to identify others are different.
Two other lists have also been formed, one for the parents and other family members of a person with prosopagnosia and a one for the academics, researchers, and other curious individuals. Additionally, a public web forum has been created to help offer a broader exchange of information between those of us who live with prosopagnosia and those wishing to learn more about it.
Information about all of the above lists can be found at this web page.
None of this would have ever been possible without the creation of the internet and the world wide web. In particular, I would never have found many of these people if I hadn't found Martijn's fantastic Independant Living list.
Having read this far, you can probably imagine that there are certain specific situations that I find most vexing. I've written an essay on the topic of school uniforms, and I bet you'll find what I wrote on the topic to be most interesting. You can read that essay at this link.
Prosopagnosia has also attracted the attention of a syndicated advice columnist here in the United States. To see what Ann Landers had to say on the issue, follow this link.
To top it all off, this page has recieved an award from The searchable index of their web site which used to exist here has been removed since that functionality of their web site is no longer being supported by them.
Many people have created web sites which describe their personal experiences of living with prosopagnosia. Some of those web sites and other useful references can be found here.
Additional resources and web sites may be found by searching Altavista
If you wish to contact me, do not hesitate to e-mail me. I will occasionally update this page to reflect the new questions and comments I receive.