What the Heck is Prosopagnosia

Prosopagnosia is a neurological condition that affects one's ability to recognize faces. It's thought to be related to damage to the right fusiform gyrus, which is a structure in the brain that coordinates information about faces and memory. A simple term for the condition is face blindness. What this means is that I'm really impaired at recognizing faces, so I rely on other cues like gait, posture, hair, body type, and tone of voice. Sometimes I think I can recognize someone from their psychological attitude, which can be encountered from conversation with them, or from overhearing them in conversation with others.

I wasn't born this way, I started to have this trouble right after the accident. At first, it was so bad that I couldn't recognize my own face in the mirror. For years, I just didn't look at my face in the mirror. I wasn't initially told I had this condition, nor was I told such a condition existed. It was practically a year before I had a neuropsych test that showed this. Prior to that test I believed I must be having trouble with my facial muscles. That is, I thought my face was not properly showing the expressions I was making.

Funny, but when you don't have correct information about what is wrong, the mind will start to come up with some plausible theory. Notice how, in the plausible theory, the mind doesn't think there's anything wrong it. Interesting, isn't it.

It was several years before I could remember that there was a medical name for my condition beyond head injury, and a few more years after that before I could reliably repeat even the first two syllables of the word prosopagnosia. I see now it may have been more helpful if I could have used the proper medical word with its definition to describe my condition more accurately to others.

Since I couldn't recognize people, I was very friendly to everyone. I didn't want to be rude, in case I turned out to be chatting with a friend. I didn't want my friend to feel hurt. I see now, those people weren't my friends, if they weren't able to be sensitive to my condition or to be helpful or caring.

A difficulty emerging from my friendliness was that I mistakenly greeted homeless people or panhandlers as though we were friends. Gradually, I began to understand that my condition made me vulnerable to manipulation or trickery. Today I have a pretty good idea that a lot of these random people who speak to me on the street are not my long-lost friends, and they're not happily waiting for a bus to go to work, but they're actually mentally unstable or down on their luck or possibly even criminals.

And yet another outcome of my friendliness was that some women mistakenly believed I was sexually easy, or they believed that I was pursuing them sexually. When I explained I honestly did not want sex these women acted pretty hurt and angry, and I was not able to diffuse their reaction. Sometimes they've involved their friends in this, and it's been unpleasant for me.

In the community of LGBTs and their allies, if you make an inquiry about who a woman is, you may be tagged as looking for a date with the person. So I've learned to downplay any dating possibility and to minimize descriptions that are complimentary of the person whose identity I'm trying to discover.

Another strange reaction to my friendliness was that women actually suggested I go to therapy until it went away. It made me wonder what the heck was going on in their own therapy sessions, for them to come away identifying lack of friendliness as a cornerstone of mental health.

Due to the odd reactions to my friendliness, I stayed home a lot. The first few years after the accident I had lotsa trouble watching movies and tv shows, because I had no idea who the characters were. Prosopagnosia made it really hard to follow the plot, since plots move forward by the characters' journey. So what happened was my taste in movies really changed. Prior to the accident I liked independent movies, or art movies, or serious movies. I was the sort of person who used the word "film" instead of movie, as in the true sentence, "I really used to enjoy foreign films." But after the accident I preferred action movies with less plot, less character development, and less dialog, but not violence.

I bought a bigscreen tv, well before they were popular, and sometimes I would try to watch any show with people in it, just to try to improve my ability to recognize characters and follow the plot. I think it worked because now I can follow plots much better. That's a nice improvement because I remember watching the last Matrix movies with a friend and afterward couldn't say one single thing that happened, didn't even know Trinity and Neo were killed. It was violent and the people looked so similar I had no idea what was happening. Of course, if word gets out that you're disabled and spending time at home watching tv, people will treat you like you're lazy or socially undesirable. People don't understand that you're doing your homework and trying to improve yourself and protect yourself.

In my case, face blindness isn't total and it isn't insurmountable. I can learn someone's face if I spend a lot of time with them, and if I meet them several times in various locations. I just need lotsa time with someone before recognizing them mainly by their face, rather than mainly by relying on cues like matching them to their surroundings, or recognizing how they walk, or knowing their general body type, or recognizing their hair, or by listening to their voice.

A side issue that emerges is that once a woman understands how much I rely on hair and pay attention to hair as an indicator of identity, I run the risk of being labeled superficial. In American culture, great attention is paid in media tabloids to hair and clothing of celebrities. Some women have mistakenly viewed me as being attentive to the wrong traits in others, rather than simply using these traits as a strategy or as a means of identifying a particular person.

In my case, I have tended to improve over the years. I haven't stayed at the same level of face blindness. I think it's because I try hard to find traits quickly that will give me a chance to identify someone. Many times I've gone somewhere and jotted down quick notes to myself describing the physical characteristics of new people. Then I try to review my notes. But more about my strategies in another post.

My prosopagnosia has seriously impacted my social life. I don't go out much, and when I do, I don't like crowded situations where people tend to mill about or change positions from where they're sitting or standing.

Sometimes I would be at a social event and greet someone and exchange small tidbits of social information with that person, not realizing that I had just told them the same thing 15 minutes ago. With some people I may have done this a few times in an evening. I only know about this because some people started asking, "Is this a joke?" And then a few of them were nice enough to explain that I had just spoken to them in the kitchen or something. More often the person would just mutter something about the movie Groundhog Day and walk away irritatedly.

Every now and then I've encountered someone who is very rude or hostile, just as a general outlook or personality trait. In other words, I don't think they're hostile only to me. I certainly try to make a note of who they are, so I don't accidentally engage with them. However, if you ask a rude or mean person her name, she won't tell you. If I ask someone standing nearby, they won't tell me the name of the mean woman, because they believe they're "taking the high road" by not getting involved. So the normal social cues to stay away from a person who is rude or mean aren't correctly associated with the rude or mean person. This is dangerous.

I also experience the exact opposite situation. Let's say a woman is very nice to me. We decide to meet at a table, or go to the punch bowl, or shake it on the dance floor. Well, if I haven't memorized what she's wearing, or if she takes off her sweater, or puts her hair up, I can't find her. This can bring about the unhappy situation where I begin speaking to an entirely new woman at the new location, never realizing she's not the person who just agreed to meet me here. When the right woman shows up, of course she's hurt and confused when she sees me giving attention to someone else, and often she doesn't give me a chance to explain. One workaround is to go where we agreed to meet and let her recognize me. A few times though, the woman was standing right there, evidently waiting for me to speak first, and wondering why I was ignoring her, which I only found out because she finally blurted out her frustration with me. Perhaps the best idea is to never switch locations. But sometimes pesky friends or loud music or cigarette smoke can get in the way of conversation, or it might be her idea to move and not mine. Another plan I've tried when we decide to move to another location is to not let the person out of my site, but to follow her no matter what. This has actually led me into the bathroom with her, which is kinda weird and not smooth. There's no such thing as foolproof, when it comes to prosopagnosia. And women sure don't like it if you can't recognize them. On the one hand it sounds funny, except it's not. In order for it really to be funny, she would have to be here by my side and we would be laughing about it later, together.

A really difficult situation is encountering manipulative or dishonest women who use my disability against me. One manipulation that I've encountered is where a woman, let's call her Rachel, pretends to be someone else, say Dina, and then Rachel (posing as Dina) asks me what I think about Rachel. A variation on this is where Rachel (posing as Dina) gets her friend, let's say, Carol, to ask about Rachel, but of course Rachel is standing right there, posing as Dina, only I don't know this. Another twist is for Rachel-Dina to realize Carol is in the room and I don't know it, and then in order to gain my trust Rachel-Dina shares something with me that's awkward about Carol, and then Rachel-Dina confidentially asks me something about Carol, and I answer truthfully, and then Rachel-Dina fetches Carol in order to confront me. It's all pretty mean. I've only fallen for that a couple of times. Rachel is doing this because she knows about my disability. Not only is she taking advantage of me, she's making it look like she's the victim or like her friend is the victim. So she's a pretty slick customer. It's important to avoid her.

Today, when in public, I try not to say too much about others. But in the past, when asked, I would appraise someone like Rachel negatively only out of self-protection. I mistakenly believed if I explained that Rachel has mistreated me or been socially cruel or psychologically aggressive to me -- a vulnerable woman with a disability -- then maybe the listener will have mercy on me and tell me to look out because Rachel is just across the room, and she's wearing purple, or something. Unfortunately, no one has ever warned me that a woman who has tricked me is somewhere in the room, or that the woman is friends with so-and-so who is in the room, or that she's due to arrive later, or that they've heard she's not coming at all, so we can all just relax. Over time I've learned not to confide and seek protection unless the person is a really, really close friend. Even then it can be hazardous. It's sad that this sort of junior high behavior goes on in the lesbian community, and among grown women.

People act like they're not interested in gossipy social updates, but of course that's not true. It's vital to our social instincts. People exchange social information very quickly, and sometimes with minimal verbalizing, and maybe it's partly unconscious, but we require it, we use it, we share it. And often this social information is way too fast for me to follow. I'm not able to simply scan a room and know who's there and who's not, nor can I determine what their relationships are to each other, nor can I tell friend from foe. Keeping track of social information is really human and very important; it actually represents the difference between having a social life and not having a social life.

On the subject of social and emotional trickery, here's a devious one. Let's say a woman, say Rachel, suggests she believes I might like some third party, say, Susan. By the way Rachel asks me, I believe she's trying to figure out if I would agree to a date with Susan, or at least friendship. Bear in mind I don't know Susan, don't even know if she's queer, but I trust Rachel and believe I'm getting some much-needed social help. So I indicate to Rachel that I'm open to Susan, somewhat out of politeness, but also, I generally like almost anyone who isn't mean. Plus, I believe people would genuinely try to help friendship happen.

Anyway, getting back to the story, I trust that Rachel is possibly arranging something between me and Susan. Here's where the trick comes in. It turns out Susan is a teenager or a 20-something, or the rabbi's wife, or even a man, or just basically a totally inappropriate choice. That's creepy and scary that someone would do that to me. I can't find Rachel to confront her, she disappears, but she's made sure someone else has overheard, and this "witness" gives me a funny look, but won't share her name. It may take me all day to figure out I'd been had. It's only happened a few times, but it makes me sad that lesbians would do that to me. Again, this only works because Rachel has knowledge of my disability, and she's using it against me, like a setup.

Unfortunately, I've experienced many negative social situations where others can exploit my disability to humiliate me or to isolate me or to raise themselves up, and I've really wanted to feel more safe and protected and informed, so I've sometimes sought a social buddy or a lesbian wingman to come to events with me. When I count the number of women who truly are ongoing antagonists to me in the years after the accident, the number is about four. And when I add the number of women who have made a threat or two, it's another four. Since that's a short list, and since several years ago it was even shorter, I thought I could work with a buddy to avoid a few women, and to meet a few new people.

Unfortunately, some problems emerged from relying on lesbian social buddies. One situation is when the buddy wants to be free to meet new women and socialize on her own without my deadweight, so she abandons the plan when she meets that long-lost friend or when she meets someone exciting or interesting, which could happen in as little as 10 minutes. Another problem is that the social buddy may start to criticize me or put me down, usually related to the way I handle my disability, and possibly she does this in front of other women.

A very common problem is for the lesbian social buddy to suddenly and dramatically denounce the whole concept of the buddy system, declaring that "it's all just a bunch of lesbian drama," and saying she "doesn't want any part of it," and typically doing this in the middle of a social situation. This behavior is often accompanied with a most amusing revision of the concept of helping, which, in the new definition has undergone a magnificently Orwellian reversal, to the point where help now means lack of help. Armed with her brave new outlook, the buddy deliberately and suddenly abandons me in public, forcing me to "stand on my own two feet," so that I can "face it on my own" and "be more independent" or "grow" or realize "it's all in my head" or that "it's no big deal" or realize that lack of information or lack of safety or even, G-d forbid, exploitation or relational aggression either "isn't happening at all" or that it "happens to everyone" and that I need to "get over it" and quit "acting like a victim" and learn to stop "blaming my disability" for "my problems" socializing with others. It's really sad to hear.

I just have to let go of people like that. I've learned that ignorance and insensitivity are powerful forces.

Over time I've come to socialize very little, and I've tried to connect more with disabled women, or to connect online, or to bypass the lesbian community, or to bypass the helping community, or to bypass the spiritual community, or, if I do go out, to go out with only the closest friend, usually in daylight and for a short period, and to always be prepared to leave quickly. I've learned not to anticipate community help or support.

Probably the most terrifying situation is encountering manipulative or dishonest people who are in a position of power or status in the LGBT community, or in the healing arts community, or in spiritual community. I remember once I met a nice woman who was a classmate in a Jewish education course at a local synagogue. I really trusted her and told her I couldn't recognize faces, not even my own. A few months later it turned out she was actually an "out" lesbian rabbi who worked in a different synagogue, even though she was a student like me. Let's call her Rachel. Rachel indicated she liked meeting people outside the context of her own shul where she had to be "the rabbi," and she said she wanted to make a personal connection with me. So I invited Rachel and her partner to a lesbian dance. I never heard back about the invitation, but guess who I met at the dance. Yep, it was Rachel, and she wasn't with her partner. And she gave me a fake name. She was alternately nice and then mean. She asked if she could buy me a drink (I don't drink), she asked to dance with me (I was there with someone else), and then she said really cutting things to me. She picked on me for my disability. I was devastated. My head was spinning. I was really frightened, upset and confused. I went home and cried, and I stopped going out dancing.

I began to question myself, and wondered how an ordained rabbi could do that. Months later I asked another rabbi, let's call her R Deborah, to ask Rachel (the openly gay rabbi) why she acted that way at the dance. Rachel told R Deborah that she didn't have to answer any questions about her personal life. I was really specific with R Deborah, I explained orally and in writing about the head injury, and how I have a disability, and how I couldn't recognize people, and how I needed others help and needed people to be good and be truthful. I said I was upset that Rachel would trick me and pretend to be someone else, knowing my problem. I didn't want to believe a rabbi would be so mean, it was really terrifying. So I allowed that maybe I made a recognition mistake, that maybe it wasn't Rachel. I said to R Deborah if it wasn't Rachel being mean at the dance, then it was really upsetting to me now, because if Rachel knows she didn't do anything to me that day, and that it was someone who looked like her, then why can't Rachel at least reassure me of that. I also said that if Rachel was not at the dance at all, so much the better, and since she knew I was so upset about this, why wouldn't Rachel just tell R Deborah that she never took me up on my invitation, and she never went to the dance. I just wanted the truth. It would give me so much safety and peace of mind. I need to know when my mind has given me the correct information and when it hasn't. I need to know who I can trust to tell me the truth. I figured I could trust a rabbi, but here were two rabbis who wouldn't tell the truth. I never received the dignity of a real answer. It was disablist and insensitive. I cried over that, and I was really afraid of what Rachel might do to me next. I need people to be good and to be truthful. It keeps me safe. After that day where the two rabbis talked on the phone, I've just tried to have shabbat at home by myself.

I've learned it's important to be very careful with myself, and to try to protect myself as much as possible. But of course, there's really no such thing as protecting yourself from all harm all the time. Even now, as I write, I'm cautious and I have concerns for my safety as a result of sharing all this, and I can only hope things will get better for me and for others living with disability, instead of somebody reading this and hurting me more. I'm learning to be more frank about my disability in the beginning, and also to track and discern helpful from hurtful people a lot quicker. I've gotten very comfortable being alone. I meditate a lot. Despite everything I take comfort in my faith.

I've already described some of the bad things that have happened when I've been honest about my face blindness. Other times I've had ordinary experiences where women take it all in, but really minimize the situation. They say "Oh, I have trouble remembering people, too." And I'm like, "It's not the same thing." I try to explain that I don't see faces correctly, not even my own. I try to talk about how it affects me and I share little techniques I use to help myself. But many of these women end up being rather dismissive of me. Sometimes a woman who shows an attitude like this isn't mean, she's just very career-minded or goal-oriented -- she's accustomed to setting priorities and writing off anything below the line.

Other times women act like I'm making a mountain out of a molehill. This type of person isn't mean, and she doesn't automatically dismiss me, but she doesn't really understand me, either. I totally accept my disability, but at the same time I'm highly motivated to improve my use of compensatory strategies. It's always great to meet nice, friendly people. There's really no telling who's going to be safe and positive and understanding, and who's going to show an attitude that doesn't work for me and may even be unhealthy for me, until I actually have a few experiences with people, and until I memorize who they are and how they acted.

Sometimes I've had the experience of women who initially seem to understand me, but then they want me to do more to improve my condition. They want me to try harder. I'm laughing as I write that. But what makes it not that funny is these women are serious. It's not very accepting of them to act that way, and it's sort of a put-down. I'm like this because of an injury and a disability, not because of a lack of trying. We wouldn't talk that way to someone who's blind. It's insensitive.

Sometimes the way an understanding position or a "helping" dynamic goes awry might be as follows. The woman meets me socially, and acts in a very befriending manner toward me, showering me with support and acceptance. This is especially true of women who work in the helping professions. They position themselves as being in a different league from women who've been mean to me in the past. These accepting women seem to be more enlightened or compassionate about my disability, due to their professional education. In 99% of all cases, they don't know the first thing about head injury and they've never heard of prosopagnosia. But these women are not so interested in being educated about it.

Undaunted, in short order they take on the role of expert, expecting me to run my strategies or my thoughts or my feelings by them, in order to get their approval or their "help." Unfortunately, their approval doesn't come. Instead they make really negative comments to me regarding my adjustments to my condition, sometimes flavoring that with entirely new diagnoses and outlandish treatment suggestions, and since they're the experts, other people sometimes listen to them. And since we met socially and I'm neither their patient nor their student they feel free to riff about it. It's disablist and patronizing. This is one of the more indissoluble situations I've seen, the false expert making absurd pronouncements with total sincerity, while hangers-on and groupies nod fervently. These women are a little like the pope chastising Galileo. It would be more comical if it weren't something of a sad commentary on professionalism in 21st century America.

Sometimes I've been to parties where everyone wears one of those disposable, stick-on, paper nametags. I really like that. Some women still don't give their real name, but at least there's a nickname or something you can refer to.

I haven't read much on the web by people living with Prosopagnosia, and that's something I'd like to change. I want to do more outreach. One person's website said there are two pieces to communication. The first is to know what is being said, and the second is to know who is saying it. That really hit me. That's exactly what's been missing. It's already pretty hard for me to understand oral communication at speed. When you add the confusion of not knowing who's talking, it makes it all the more difficult.

I've learned that people who require too much anonymity or invisibility are usually up to no good. Why would you need to be so invisible if you were really proud of your actions?

I know there's plenty of good and caring people out there, and I hope to meet more of them.

Here's a CNN story about face blindness, and it's short, but pretty well-written. There's a fast paragraph about using the "buddy system" in social settings, and another paragraph on how our condition leaves us vulnerable to being victimized by people.

Here's another news story about prosopagnosia by Canada's Globe and Mail, and this article suggests that people who are face blind may also have difficulty judging attractiveness. No wonder I think everyone is beautiful!


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