Coping with Prosopagnosia

The last post I made about face blindness described many negative social situations that I've experienced since I acquired prosopagnosia from a head injury in 2001. In this post I want to describe how I've been handling the condition.

The first thing I noticed after the accident was that I couldn't recognize my own face in the mirror. Even after I understood intellectually this was me, I still was met with an unfamiliar face in the mirror, which was unnerving and surprising. So I avoided looking at my face in the mirror. It was just too jarring to see such a stranger. If I accidentally caught a glimpse of myself in the mirror, I might for a split-second think, who's this that's come to visit me? So in a way, it was like I always had company.

So that's the first thing, I try to have a sense of humor about it.

I had a huge, widescreen tv, and although I preferred watching nature shows, I tried to watch tv shows that had people in them. For me, watching tv was a little like Sesame Street for prosopagnosiacs. It took time. Even after a few years, in 2003, I still couldn't follow characters or plots very well, and I totally biffed it when asked what happened in the Matrix sequels. I don't know why references to pop culture serve as a handy measuring stick for rehab, I guess that's just the kind of post-modern grrrl I am. But over time I did improve. I understood and followed many of the last movies I've seen.

One thing I did while watching faces on tv was pretend I was looking at the side of a mountain, instead of a face. I remember going to Yosemite and seeing the waterfalls and the vertical rock formations at different times of the year. I remember that after staring at natural features for a while, I would see climbers with ropes making their way. I also remember scrambling around on some rocky surfaces there myself. I remember physically touching the cliff with my hands, feeling the warmth the rock was holding from the sun, and using my hands to help me scoot around. And I also remember when I was younger I saw several photographs of vertical rock formations at Yosemite, including some by Ansel Adams and the f/64 group. When I was a young student, the work of those photographers really drew me in and impressed me. It caused me to love, to value, and to abstract so much from lines, crevices, shadows, and shades.

So one trick I tried while looking at faces was to imagine I was looking at some other vertical surface, like El Capitan in Yosemite. I might visualize a small area on the face where tiny climbers would choose to rappel. The climbers would have to be ant-size! And I might remember how my own hands physically touched the rock surfaces I scrambled on. I might imagine an Adams-styled, f/64-styled, black-and-white image of the person's face, but particularly where a face area could be abstracted.

The combination of these effects might allow me to create a shaft, or a lane, or an angle of recognition on some part of some faces. I was still not able to really see the whole face. But if you can create a familiar pattern on say 15% of a face, it can really help in identification, especially when you consider that gait, body type, hair, and other cues are still in play.

I don't recommend staring intently at people on the downtown bus. It was easier to do this if the person didn't know I was staring at them, so if the face was on tv, great. My tv even allowed me to make a freeze frame, and I would make several, as I didn't want to get locked into one image of a character. It was just easier to try this technique if the faces were larger than life, and didn't move around too much. It was also easier to do this if the faces were older, and had wrinkles. And certain dramatic lighting conditions would make it easier to do this. This technique didn't work well on smooth faces, or where the lighting was fairly even.

Once I started getting out more, I needed more techniques. If I were in a small group of three to eight people, and everyone was sitting or not moving much, I would almost always make a cheat sheet that described general physical characteristics, accoutrements, non-physical identifiers, and some face features of each person. Sometimes the cheat sheet would be in the form of a seating chart, other times it would be a list in the order people talked, other times it would be in an order reflecting who was more socially dominant.

After my accident it was difficult to determine who the alpha women were in any given situation. I hate to make it sound like we're all a bunch of monkeys, because we're not. Nevertheless we are primates, and social hierarchy is no trifling matter. After the accident, my status went from one of the alpha mammals to something like circus dung sweeper. And I was one of the last people to find out. Even the cats knew it before I did.

I sensed it was important for me not to piss off the alphas, yet I also didn't feel comfortable schmoozing with folks who were perhaps too raw or uncouth. I had to really concentrate in order to navigate the social hierarchy in any given situation. This is no easy task, since the truth of hierarchy is hidden in plain view. That's the one place I really can't see. To navigate social terrain after becoming newly face blind, is like waking up and finding yourself to be an African American student in Arkansas in the 1950s, who's been bussed to an all-white school, and told to study calculus without knowing trigonometry first. Just pack me a lunch and I'll be fine, right? Sure.

If you can't see faces properly, you are missing the emotions that are signaled and reflected in faces. Emotions give important information about what's intended and what's received. What's actually happening is so much more than what's being said. I recall telling my partner at the time that she wasn't showing any emotion, and I remember thinking her face was impassive, like a cardboard box. We're no longer together. My point is, faces matter on so many levels. Otherwise our brains wouldn't have evolved with a dedicated region devoted to understanding faces.

Back to the cheat sheet. First I would jot down gross physical characteristics, and by that I mean body shape, posture, that type of thing. I would pay great attention to people's hair, and use details to describe hair. Nowadays many people carry backpacks, and so I would try to notice that. I would also pay very close attention to any accoutrements like hearing aid, cane, wheelchair, etc., because these often are perceived as extensions of the body, and are not discarded easily. I may notice an unusual phone, and be able to describe the manner in which the person uses the phone. The way a human body interacts with iphones, flip phones, and the treo-blackberry form factors is quite distinctive, however people tend to switch phones every year or two. Sometimes people have a favorite hat or scarf, but these things often are easily swapped.

Then I'd write non-physical identifiers on my cheat sheet. Examples would be "lives in Napa" or "works second shift" or "was an early organizer for Obama" or "always talking about surfing" or "her mother has frequent attacks of mild pancreatitis." This has come in very handy. It works like this. Perhaps I have a friend who knows both me and, say Megan, and the friend launches into an update about Megan. It's no use unless I know who Megan is. And for me, I need some kind of "peg" to make Megan an actual person, and not just a meaningless or random name. Then I can hang the story on its proper Megan peg. If my friend knows my problem and describes the physical features of Megan in order to tell a story, my friend may use physical descriptors that I can't follow, like "cute face." Now, what does that mean? I don't know cute face. Have I been dating beautiful or ugly people without realizing it?

Or the friend may use general descriptive words that apply to half the population, like "brown hair." I mean, how is that specific? Pets, coats and carpets can all have brown hair.

So I may ask, "wait, you mean the woman who had the bunions removed, and plays softball with Helen's friends, and wears the turquoise rings, and brought fish to last weekend's potluck?" This may identify Megan to my friend, as people often have common knowledge of each other. And now I get to learn from my friend that Megan is actually cute, and that people view her wavy, shoulder-length hair parted on the side, as brown, and not as chocolate drifting toward red.

When it comes to noting purely facial characteristics on my cheat sheet, I didn't always have much to say about that. I tend to dismiss cute face, beautiful face, and ugly face as having little meaning for me. However, as the years rolled by following the accident, and with repeated exposure to someone, I've been able to describe areas or planes of a face, such as a narrow forehead, or a high forehead. I'm also able to see freckles. I just don't see the whole face at the same time.

I can also see basic face outlines. I can tell if a face is oblong-shaped or if it's unusually round. I can tell if someone looks like they have the mumps, as in a face like John Goodman's. I believe the more polite term for that is square-jawed. This brings up the subject of unusual features, such as Jay Leno's chin. I really can't see it well enough to know whether he's square-chinned, although I remember him well enough from before the accident to know something's going on with that chin. Ditto with a weak chin. Knew about it before the accident, but can't use it much these days. Today, I don't see chins as clearly.

Still on the lower face, if someone has taken their dentures out, I'll bet I could tell, but that doesn't mean I know who the person is. Folks don't often do that in polite company, anyway. And braces can be tough for me; sometimes I see them and sometimes not. People don't always like it if you say "are you wearing braces?" More often than not, they respond with, "Why, is there food in them?" Even with that giant clue, it took me some time to realize two things: one, they must have braces if they go digging around in them looking for stray lettuce, and two, this isn't polite social chitchat.

With lips I can see if they're glossy from lipstick, but not much else. It will take me lots of effort and exposure to determine full lips from thin lips.

For me, noses sometimes can be seen in profile. My father had a classic Roman nose, very straight and rather like a triangle. Michelangelo's David has a similar nose and so did Robert Reed of the Brady Bunch. After the accident this type of nose seems very average, and for me, it's not easily assigned to particular faces that are new faces. Sometimes curved noses are easier for me see in profile, but it requires a bit of staring. Rather flat noses or rather large noses don't really register very well for me, and again, it's risky to be caught staring.

Everyone loves the eyes, they're the window to the soul. And that used to be true for me, too. Post-injury, I'm not sure if eyes are narrow, or widely spaced, or set close to each other, or are almond shaped. I suppose I stay away from eye contact more than I should.

However, I will try to pick up someone's eye color for my cheat sheet. People who are Asian, Latina, or African-American often have brown eyes, and if I don't see race in their face, I could always look at their forearms. However, I live in an urban area and many people are multi-racial, so guessing eye-color or race isn't really the best plan. Come to think of it, I live in an area with a lot of trannies who demonstrate that even gender can be fluid; some people aren't into the binary gender categories at all.

Back to the eyes, if I can't pick up eye color quickly, I might just ask, "are your eyes blue, or is it just the light in here?" Or, "my goodness your eyes are so striking" might be enough for them to tell a story, and if you listen they will say the color. Or I might try asking if they're wearing tinted contacts, but I would add something like, "I was thinking of getting a pair, and I heard they take some getting used to." If she's not wearing contacts, she will laugh and say those are her real eyes. And then you can relax and peer into them, and maybe she'll tell a story and say the color. You have to use caution here and take care not give the appearance that you want romance.

It's kind of funny, but because I look a little like a soft butch, when I talk about eyes to a butch lesbian, she might react in the manner of a straight man being approached by a gay man. Just imagine all the ways that can go awry. And if I talk about eye color with a more femme woman, and her butch "husband" gets wind of it, I'm sure you can see how that might play out. Oh, the joys of lesbian community. Or identity. Or whatever it's called these days. Of course, the butch-femme dynamic would be different if I'm talking to people in the younger generation, or if I were in a different part of the country. But that's another story.

By looking at face parts one at a time, I have a good chance of recognizing face features in a Mr Potato Head sort of way. Though I see the parts, I struggle to see the whole. But I still see a lot, in a close-enough-for-government-work sort of way.

Getting back to the cheat sheet, it's not enough to write stuff down, I hafta review my notes. A lot. Otherwise the person just fades. If I'm meeting people around the circumstances of a new project, then in the beginning I might keep the cheat sheet handy at all times. I might write something very descriptive, similar to a cast of characters list, like what you might see before a play's script.

I would practice my cheat sheet or character list at home, and out loud. That way more pathways wake up: verbalizing, listening, possibly using mimicry to act something out, physically touching a piece of paper, and maybe even retracing my own handwriting. I know this sounds weird, but sometimes I can practically smell the ink on the paper. I'm just trying to enlist all the senses.

Since the accident I'm not the best at writing with an ink pen on paper, so sometimes I might use a dry-erase marker to write notes on a hand-held, dry-erase board. The trouble is the board is going to be erased. This is the entire concept of the dry erase board. And that's uncomfortably close to the way my own mind works. So I might take a photograph of the notes on the dry erase board.

Using the dry erase board kinda calls to mind the pioneer days when kids attended one-room schoolhouses and learned to write and cipher with chalk on slates. Makes me feel a little like Abraham Lincoln in a prairie schoolhouse.

In comparing low tech writing to the revolution of technology, I'm not always convinced new is better. For example, I often make reminders about a new person in my phone or PDA, rather than do a full cheat sheet. But how do I remember to look her name up and not another? Remember, I have a head injury. Really tracking someone new in a PDA might require a second entry on the calendar section of the PDA. Extra steps. And it can be a little conspicuous to enter the names of several women into your phone/PDA right there in public. People will think you're a playboy.

Another drawback to writing notes for cheat sheets or PDAs is you can't do this in a synagogue on shabbat, or in the middle of yoga class, or at a party crammed full of schmoozing lesbians all milling about.

There's plenty of times when neither a cheat sheet nor PDA will work. If I'm with a group that's eating, I might take extra notice of a few of the dishes ordered. I might ask very specific questions about some meals. If the person says the feta cheese omelette is too soggy, or there's not enough salt on the fish, or that the olives were Greek and not green, I might repeat the information out loud, and then imagine tasting the dish as described by the person's description, while looking at their body language, or posture, and noting their psychological attitude. The more senses used the better. This only works with unusual dishes, and unusual complaints, or if the person has a distinctive eating trait, like being terrible with chopsticks. So any butches that use the table to start playing field hockey with the fortune cookies likely will be forever emblazoned in my mind.

During a meal, I can't absorb information from too many people, only a few at the most. So tracking lesbian grazing habits at a buffet or potluck where a couple dozen women are in attendance is way, way too much. And in general, eating isn't a situation where I have the privacy to retreat and make a cheat sheet. When you whip out the writing utensils during a meal, people don't think "prosopagnosia." They think you're a food critic, or they think you're writing love notes to the hostess, or they think you're trying to reverse-engineer their recipes or something.

Despite all of these strategies, if the person gets a totally new hairstyle, or if I don't see them for a while, then whatever I recall of their face is likely to disappear faster than a shook-up Etch A Sketch.

No worries, I still use gait, posture, hair, body type, psychological attitude, and vocal tone to feel my way around social terrain. And humor. It can be slow, and it's prone to error, but it's how I live.

That's pretty much the strategies I've tried to implement by myself. Next I'll talk about how others can help the prosopagnosiac.

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!

Why I Blog

I feel the need to protect and to help myself and others.

I had a head injury several years ago and am disabled from it.

As a result I have or I have had Prosopagnosia, Nystygmus, Cerebral Achromatism, Dyscalculia, double vision, vision drop-out, headaches, neckaches, fatigue, problems navigating, difficulties with comprehension, memory and planning, and a bunch of other stuff I can't remember.

Normally, it's not that bad.

But, as Jean-Paul Sartre said, hell is other people. Since my accident, I have encountered a level of insensitivity, ignorance, and prejudice that I had never known before. It's been a real blow. Sometimes, I've experienced cruelty, and I haven't felt safe in social settings, in places of worship, in volunteer projects. It seems I am more vulnerable to relational aggression, which is like a form of social bullying or internet bullying. And it hurts. So far, I haven't been able to protect myself very well from it. Unfortunately this has happened in the LGBT community.

I hope over time the tide will turn. I know it will.

It occurred to me that if I blog, I would be better protected and perhaps less vulnerable. Maybe I would improve my skills and remember more, and be taken advantage of less, and be treated better. And if I really can't remember more, at least I'll have something true to look back at.

And I always wanted to tell my story. Who doesn't.

I'm proud of who I am. I don't feel ashamed or lacking. I know the secret. A human being is not defined by income or by IQ or status or even achievement, but by qualities of being. I'm really into qualities of being. I can be caring, I can be a good listener, I can be available, be friendly, be present, be creative, be meditative, be supportive, be kind, be patient, be spontaneous, be funny, be free. It's easy for me. Other people don't have time to just be. Their ego drives them to other things. But I've had an amazing spiritual journey.

By writing I also hope to reach out to other folks with disability, particularly those with similar issues. I'd like to share solutions and strategies.

And hey, maybe I'll be able to write about many other things in life that aren't disability-related. Like art, music, technology, sports, yoga, spirituality, comedy, and the economy.

I think that's a pretty good list.