Face Blind!

Chapter 2

Discovering Face Blindness

BillA surprising number of people, though born with their face blindness, do not learn of it until later in life. Like many, I learned of mine in middle age.

Some people are surprised that someone can go so long and not notice such a deficit. The reason it can happen, of course, is that someone like me has nothing else to compare it to. It is all we have known. (Face blindness, by the way, is not alone in fooling those who have it. Professionals who work with people with other neurological conditions, such as learning disabilities and Asperger's syndrome, report similar stories.)

We often suspect something as being amiss but, not finding it, we eventually mostly forget about it and plug along for years, figuring we'll iron it out someday. Then in middle age, you realize that many years have gone by, and that you are getting nowhere fast.

You begin to furiously dig. You search your innermost feelings for how you see the world of people around you. You pay attention to things you have never paid attention to before. And suddenly it all becomes very clear. That happened for me the day I realized I was face blind.

How It All Began

Face blindness is, of course, as old as the human race. Every part the human body comes with, in one individual or another, will show up broken. Face blindness is no different. It has been documented in Greek literature back before the birth of Christ.

Of course, I cannot trace mine back that far! The condition is so rare that it often goes unrecognized. But neurological conditions do run together, and when you get one, you often get others. Getting them is a bit like having a shotgun fired at your head:

When I was a kid my dad would bring home geese he had shot, and we'd have to eat them with care because we never knew where the pellets would show up. Every goose would have them, though. And that's how it often is with neurological stuff. Each guy who gets blasted gets his own unique bundle of problems depending on where the pellets ended up. I got distorted hearing, an unusual walking gait, face blindness of course, and a few other minor things that really don't affect my life much.

One's intelligence and abilities to use language are neurological constructs, and they are "big targets". Lots of people with neurological problems, including face blind people, can get hit there. But in our family, we were spared in those areas, and for the most part excelled in them. As you will see, this was one element that enabled me to discover in only fifty years things that many have never lived long enough to find.

Back Five Generations

The earliest I can trace all this back is to my great great great grandfather. Though only a handful of anecdotes remain about him, two of these few are very striking. One is a tale of him failing to recognize someone with whom he had spent the previous evening. The other is that he told everyone he fell in love with his wife because she had long hair, a tale he told repeatedly. As you learn more about face blindness, you'll realize why this is worth noting.

Back Three Generations

The next place evidence appeared was in my great grandfather. The circumstances of his death give us the clues, because it was the "Rodney King" case of its day, widely reported in the newspapers in great detail.

I have been assaulted a few times in my life, and later upon questioning, I have realized I was unable to hear the words of my assailant. With my distorted hearing, I have to concentrate too much on "listening" to be doing anything else, such as dealing with a physical confrontation. A physical confrontation gets top billing, leaving my hearing out.

I have also had difficulty identifying my assailant. Besides not picking up on their face, of course, in the furor of an assault, I have been unable to process the images of other features such as their clothing. In 1986 in Butte, Montana, a state trooper, in uniform, who apparently had to go to the toilet so bad he couldn't wait, forced his way into a rest room I had already entered, just as I was about to lock the door. He yelled at me some words which I never understood and then threw me out. The guy was huge, and I was terrified by this, running from the restaurant, reporting to my three traveling companions that a "big cowboy" had attacked me in the rest room. They all said he was a state trooper, but I had not seen that. All I could notice was that he was wearing tan chino pants and a wide brimmed hat.

In 1998 in San Francisco, a traffic control officer attempted to stop me and about fifty other pedestrians from crossing an intersection. Everyone heard her shout but me and moved backward, and soon I was in the intersection alone with her. She kept getting in front of me and I was trying to cross the street because suddenly traffic was coming. I thought she was a crazy lady and the traffic had me in a panic. The traffic saw the confusion and stopped. Only then did I realize she was an officer. She was in full uniform.

In retrospect I felt that my vision was glued to her face, trying to extract emotional information that it was not possible for me to get. My gaze was just stuck there, and much larger things around me, such as her uniform, were not seen.

Now getting back to my great grandfather, he and his son had concluded a business deal in Illinois, and to celebrate, they had gone on vacation to Los Angeles. The businessman in Illinois with whom they had dealt became unhappy with the deal, and telegraphed the police in Los Angeles to report that he had been "swindled". The L.A.P.D., with all the tact Rodney King can tell you about, came crashing into their hotel room on December 17, 1903.

Bystanders reported that, though the men entering had said they were police officers, it was apparent from my relatives' actions that they were not aware of it. They tried to defend themselves against the intruders, and my great grandfather was immediately killed. His son went after the policemen as they momentarily retreated, attempting to enlist the aid of bystanders to pursue the men who had killed his father. The son was soon ambushed and killed. Since one does not solicit help in pursuit of police officers, but instead lies low, the bystanders reported it was obvious the men had not known their assailants were policemen.

The public was outraged when the bystanders' reports became known, that men had been gunned down who didn't know an arrest was being attempted. The local newspapers thus covered the case in detail. Those details were so close to what happened to me in Butte and in that San Francisco crosswalk that I can thus trace my situation back three generations. And the accounts regarding my great great great grandfather let us look back two generations more.

Back One Generation

I don't know anything about my grandfather in this regard, but my father had my unique gait to such a degree that people who had never seen me before pegged me as his son due to it, in the town where he grew up. He also had distorted hearing, which my sister also inherited. But neither of them had it nearly as bad as I did.

As to face blindness, my father I believe was a generation it skipped.

Growing Up Face Blind

I arrived on the scene in a coal mining town in the foothills of the Illinois Ozarks in 1946. For my first three years, all I did was scream and rock. I never spoke a word. My mother dragged me off to specialists, and when one said I was a normal, but late developing child, that's what Mother wanted to hear. Thereafter, that anything was "wrong" with me, was something that she would not hear.

Sometime between age 3 and 4 my brain matured to the point I could make sense out of the distorted garbage that is called "speech", and I began to talk.

In first grade I first encountered lots of people in one place. I could not tell all those people apart at first, but in the classroom I eventually learned who sat where. On the recess field, though, it was impossible. I could recognize almost no one, and I couldn't understand their speech. I played alone, though I wanted a "group" that would play with me more than anything. Finding such a group, a group with whom I could be friends, became a major life goal.

Most kids in a coal mining town wear blue jeans. In third grade I figured out that most kids wore the same brand of jeans every day. At that age a kid's mother would buy several pairs, all the same style, for him, and he'd wear them every day. I began to learn how to recognize people by how their jeans looked, and moved, from the back. I also noticed that some people had more hair than other people did. I learned to recognize those people.

This all only worked on males. I now realize that it never coalesced before that age because I seem to use circuits designed for "sizing someone up" for recognizing people, because those circuits are the only decent ones for recognizing people that I have. And those circuits do not come on line earlier than that age. They only worked on males because, way down the pike, I was destined to be gay.

Face Blind into Adulthood

I grew into adulthood recognizing people by their jeans and hair. I never gave this any thought, any more than people who recognize others by their faces give that any thought.

College was great! Almost everyone wore jeans, and lots of people in the late 1960's and early 1970's had long hair. I was more able to make friends than ever before.

All was not well, though. I went through a continual chain of friends, one after the other. See, my recognition systems are not that good. I'd make a new friend in the cafeteria, we'd make a date to go hike or something, and I'd have a great time. The next week I would fail to recognize my new friend in the cafeteria, and the friendship would end.

The great thing about college, though, was that one had great mobility to farm an inexhaustible supply of people. When I entered the work world, that all ended. My social world collapsed.

My First Coming Out - A Very Ordinary One

At first I attributed the collapse to my being gay. I met a great man and we moved to San Francisco, where being gay is no problem. Other gay people found doing that made their making-friends problems go away. Mine did not.

My Second Coming Out - Self-Identity

I realized after much thought that I only connected well to some people, and of course they were long haired guys in jeans. I also realized that I felt very self-conscious about the prospect of not being that way myself. My employer at the time did not like such people, and over years of that the isolation was on the verge of driving me crazy.

I did extensive reading in the library, and I came to realize my feelings as to my identity were as strong as those who want sex changes are as to theirs. I also learned that my feelings towards long haired men in jeans were those one most commonly has towards his social group. I talked to other people, and I found my feelings on these things were far beyond what they felt when it came to clothing or hair. My feelings were in the realm of what one feels about his race or sex. I realized that I could only really satisfy my dream of finding my "group" by looking there - among long haired men in jeans.

Surely, I was not the only person to have these feelings who was not transgendered or racially misplaced, I thought. The only way to find out was to come out, and I did.

I discarded all the inappropriate clothing, and within weeks felt a surprising surge of self-confidence and self-esteem at work. My shame was gone. But after many years of relentless hunting, I only found two people in all those years who agreed with me.

One was Rick in Los Angeles. A friend of his in San Francisco had heard my pleas, and said I should meet Rick, because this friend had heard a similar line from him. We met, and he was indeed very much like me. But like me, he had never met any others. Although I could not frequently see Rick, we became lifelong friends.

The other guy was an autistic guy in San Francisco, whom I had met at a social club. He had broached the topic of my appearance with me, and we discovered a commonality.

My Third Coming Out - Hearing Impairment

I know I would have never gotten to this point, if it weren't for my partner (since 2008 my husband) Larry. He had noticed that my hearing was very poor, and he insisted I get it tested. I came back from the tests with "normal" results, but Larry wouldn't hear of it. Fortuitously, he is an audio engineer, and the suspicions welling up inside of him before he finally spoke were not to be assuaged by a mere test. He insisted I get more tests and they said my hearing was fine, too. Larry insisted we vigorously compare notes day in and day out. And we discovered that, despite the tests, my hearing was extremely poor.

We eventually learned that I had a condition, known as "central auditory processing disorder," in which the hearing is scrambled in the brain. I attended a number of seminars put on by deaf and hard-of-hearing agencies, and I learned all the tricks I could to hear as best I could. These were very helpful, but I sensed that something was still missing. I did not know what.

Larry bought me a caption decoder, a device that puts subtitles on the TV, for my birthday. I had never cared much for TV before, and after getting the decoder, I realized it was because I could never really follow the plots of the shows. I began watching TV in earnest.

I Can't Tell People Apart!

Still, I seemed to be having problems following some plots. Some shows I would do just fine. Others seemed to be impossible. We put the comparing-notes skills we had acquired in discovering my hearing deficits to work. What was it, we wondered, about some shows that I could follow everything in them?

One day we were watching a show where I was having trouble. A character appeared who I thought had been killed earlier, and I mentioned it to Larry. He said there were two characters, not one, and I had thought they were the same guy because to me they looked alike. I had been treating them as one person throughout the program!

We began to analyze the different characters on TV, and it became apparent that the only characters I could identify easily were men who had beards or long hair, or wore jeans. It was the shows with mostly men who looked like that whose plots I was able to follow.

I commented to Larry that one problem with TV is that they don't show enough of the people, but just their faces, and it was hard to tell who they were that way. He said he could very easily tell the people apart just seeing their faces. Then it dawned on us that most people must be able to do as Larry does, or they wouldn't produce the TV shows that way.

Larry commented that we had known for fifteen years that I did not seem to know who any of the Hollywood stars were. He had commented on it shortly after meeting me, but we just chalked it up to my "not being interested in such things". (Now I can say, "Of course I was not interested in such things. Blind people aren't interested in color, either! Few people are going to be interested in something they cannot distinguish!")

One afternoon after that, I spent about two hours at a busy tourist spot where I knew absolutely nobody. I very carefully watched all the people as they came and went. My aim was to contemplate, for the first time in my life, how I recognized people.

I soon realized that all of the women and some of the men were pretty much drawing blanks. If I looked away from any of these people for more than a few seconds, when I looked back I wouldn't be sure it was the same person I had seen before.

For some of the men it was different. I felt very connected to them if I looked at their clothing or their hair. But if I allowed my eyes to wander up to their face, at about the moment they crossed the jaw line, I would draw a complete blank. I could tell that the minute my eyes crossed that line, I felt very different. I felt no connection to the people then at all. I realized that the information was going to a completely different place, and it was basically a black hole! After I had let my eyes cross the jaw line on a couple of dozen people or so, I could actually feel an emotional difference in my head when this happened. All connection I felt to the person just evaporated.

Beginning To Find Others

That this could be happening seemed really far-fetched. With my earlier "coming outs" I had found stuff. Quite a bit was out there on sexual orientation and on deafness, too. I even found stuff in libraries on identity issues. But on the inability to tell people apart, I found nothing.

We had recently gotten onto the Internet, and I had read the hype we've all seen that you can find out anything on the Net, so I decided to really put it to the test. In May of 1996 I put out some feelers, and in time I got a response from someone in Canada, that they had seen the topic discussed briefly in a support group for people with neurological conditions, and I joined in and began making connections. By the end of the summer, I had found about four other people. This gave me the confidence to do what I did next.

Rick

In late August, I visited Rick. While our partners were riding the roller coaster at Santa Monica Pier, I popped the question. I said, "Rick, this may seem far fetched, but I want to ask you something. Do you have trouble telling people apart by their faces?" His mouth dropped wide open. He said, "How did you ever suspect that? That has always been my deepest darkest secret, and it has always caused me deep shame." He went on to say his partner was the only person he had ever told.

I told Rick about what I had learned on the Internet, and he said then and there that there was no reason to be secretive about it anymore. He went on to say that he credited his inability to recognize people with his success at one of his work endeavors!

For many years Rick had been the chief audio man for the Academy Awards, a Hollywood production which drew many workers who were star struck. Rick attributed his success to his ability to concentrate on the work, because he never knew who anybody was! Rick could do the work without all the distractions others had to deal with, and he quickly rose to the top spot in the crew. (He also related that he had once physically collided with the rock star Prince backstage, having no idea at the time who it was he had bumped!)

Soon after that I looked up the autistic man in San Francisco. He, too, it turned out, was face blind.

The Naming of Face Blindness

Meanwhile, the small group on the Internet was busy. On the same day two of the members stumbled across a long Greek medical term for the condition, "prosopagnosia", and with that in hand we began to find medical articles. We also stumbled across Glenn, who had known he had the condition since early childhood, and who had put information about it on his web page, using the Greek medical term.

We continued to compare notes, and when people half a world away told tales with unimaginable nuances mirroring our own unrevealed experiences, we knew what we had found was very real.

The Greek name, though, was a real nuisance. None of us could spell it, or pronounce it, without difficulty. Far worse, we knew no one else would be able to either, and that could only hurt us. In late October, I racked my brain to find a simple English term for the condition, and, seeing the parallel I've mentioned between it and color blindness, came up with the term "face blindness". Over the months to come, just as other groups have discarded long medical-sounding terms, those of us who have face blindness would shift to mainly calling it that. (I have been asked, did I "invent" the term "face blindness"? My answer would be that in all the millennia past, I would be very surprised that many times someone somewhere hasn't said, "I'm blind to faces" or the like. The term is a natural. But I can say I am the one who suggested we actually name the condition that.)

The Face Blind Folks

Meanwhile, our small group began to grow. As more and more people found us and joined in, our knowledge expanded and we really began to make sense out of face blindness. As the group became too unwieldy to simply exchange email messages with everyone else, Glenn would step forward to take on the task of "membership secretary". And we chose a name for our group, "The Face Blind Folks".

The Birth of Face Blind!

It took me about eight months, working full time on this project, to first assemble the material you'll see here. At first I did the research, and I wrote things down, for myself. I needed the information to chart my own path through life. In effect, I had set out to provide for myself all the same kinds of information I had found earlier when I needed help with my hearing impairment and sexual orientation, but this time for face blindness. For face blindness, the information simply wasn't there, and I set out to provide it. I organized it all for my own use, and when I was done, it was on my hard disk that it sat.

The information was very useful to me. For the first time in my life I understood myself. My stress level dropped about ninety percent. For the first time in my life, I was at peace. I had not realized it before, because I knew of nothing else, but at this time it became very apparent - the first fifty years of my life had been pure hell.

Along the way to gaining this knowledge, I had met others who were struggling with face blindness too - adults with the condition and the mothers of young children who had it. I began to think about those people, and I began to weigh the discomfort that any "coming out" entails, particularly a public one, against the need that others might have for the information. Though it was tough to do, I could bear not sharing it all with the people my age. After all, I thought, I had worked it out and made the discoveries I needed, and they could too. But then my thoughts turned to the young face blind children. The thought of one young child needlessly going through fifty years of hell as I had done with my life was more than I could bear.

I realized that the information those kids desperately needed only existed in one place in the world, and it was trapped on my hard disk. After a week of that thought hanging over my head, I could stand it no more. And that is why you are reading this now.

Why Me?

Earlier I mused at why it was I who ended up being the guy to write this thing. It certainly wasn't part of my life plan. A few years before, I could not have imagined this happening. But now I know three things converged at the right time and place:

What Has Happened Since First Publication

Face Blind! was first published in 1997. Since then we have come to see a very different world.

Back then, few professionals outside those directly involved knew anything about our condition other than its name, and a shocking number were totally unaware of it altogether. When face blind people first met on the Internet, we found quite a few of us had been told by professionals that "there is no such thing" or had been given flawed tests and then told we didn't have it, though once we had met others and compared notes, we knew we did.

In this environment we learned about our condition from one another, and in this environment Face Blind! was written. We scoured medical libraries and read every professional article then written, and we read such with a critical eye. Other than this, our contact with professionals was minimal, and in the environment at that time this probably was rightfully so. By striking out on our own, we discovered many things that well-meaning professionals would have discouraged us from pursuing, had they been around.

Some of the things we found seemed very weird, and I thought about whether they should be included in Face Blind! "Will people think we are kooks if we include this stuff?" certainly crossed my mind. Well, I put the stuff in because I wrote primarily for other face blind people, and if someone experienced these things I wanted him to realize he was normal, and not weird.

It turned out that professionals indeed did not know of these things, but there were parallels in other areas of neuropsychology that those "most in the know" were aware of and we were not. In our weirdest reports - the things no one could ever dream up - they found us to be very genuine.

Medical teaching and research always plod onward, but in this case we feel we set a snowball roaring down a hill. There has been an avalanche of activity since we did our work and Face Blind! was published. Psychology and neuropsychology students are now learning about us in profuse numbers, as attested to by the e-mail we receive and the Internet traffic logs associated with the web site.

Exciting too are the increasing number of people working on face blindness, and some of the new medical research tools at their disposal. The functional MRI, a tool just coming into use, actually lets researchers see what part of the brain is active when one has various thoughts. They have already tested ordinary people, those without deficits, and learned that seeing faces causes activity in different areas than seeing other objects does. Tests with face blind people to see how we perform are now underway.

Professionals noticed our work in another way. In 2000 I was invited to present a plenary speech at "Tucson 2000" the world's premier conference on consciousness sponsored by the Department of Psychology, University of Arizona. Besides speaking before this group of hundreds, I spent a week in Tucson talking to many about face blindness and learning of their research, research relevant in quite a few instances to coming to understand face blindness.

Indeed things have changed since our earliest days as a community, a time just a few years ago, because I was very well received among the professionals in Tucson. This assemblage of people, those most interested on the planet in how the mind works, were excited about the numerous things that those of us with a unique perspective, one of not seeing the face, had found.

The face holds a crucial place in our sense of humanity, both in our sense of self and in our sense of connecting with others. Our discoveries as face blind people have given people such as those at Tucson new insight into these areas. We look forward to working with such people in their quest to advance those discoveries. In doing so, we will come to understand ourselves more, and through us they will reach a greater understanding of humanity as a whole.

So now let us begin our journey through the world of face blindness with a look at what physically causes it.

"Face Blind!" - Table of Contents

Chapter 1Introduction - BACK
Chapter 2Discovering Face Blindness - YOU ARE HERE
Chapter 3Physical Causes of Face Blindness - NEXT
Chapter 4The Importance of Recognizing Others
Chapter 5How Most People Recognize Others
Chapter 6Ways To Recognize Others Without Using the Face
Chapter 7How Non-Face Recognition Methods Work in Practice
Chapter 8A...Bill: How I Tell People Apart
Chapter 8B...Pertti: Recognition System - The Essence Model
Chapter 9Effect of Face Blindness on Emotions
Chapter 10Effect of Face Blindness on Sexuality
Chapter 11Effect of Face Blindness on Your Social Groups
Chapter 12Understanding Why People Choose To Look Alike
Chapter 13Ways To Improve Our Lives

Appendices

Appendix AHow To Find Medical Articles on Face Blindness
Appendix BGetting Diagnosed (Tested) for Face Blindness
Appendix CLinks to Other Face Blind People
Appendix DAuthor's Information Page

This document is copyrighted. For information, or to contact the author, go to Appendix D, the Author's Information Page.

Last significant revision to this chapter: January 1, 2002.
Last minor revision to this chapter: November 11, 2014.