Aftermath to Krip Hop Homo Hop

I went to the Krip Hop Homo Hop Saturday at 2 p.m., and after all that happened, Leroy wasn't able to have us speak at 3:30 p.m.-ish, like the program guide said. I started to get really fatigued. Judy Sierra left early. Gradually my acquaintances drifted away, and finally the last friend of mine was ready to leave. I had already been closing my eyes and knew I needed to leave, too. In addition to fatigue, since I've been getting bullied, I don't feel safe in public unless I'm with someone I really trust. Some time after 5 p.m., I got up and told Leroy I had to go. He apologized for not calling on us. I accepted his apology, and told him so. But in a way our advocacy work was stopped by another advocate. We weren't given the floor for five minutes to speak our message to maybe 30-50 queer disabled artists and allies.

And another thing happened at the event. Two women (who said they knew Judy Sierra) were really aggressive and rude to me. They weren't honest with me about what the problem was. I asked if they wanted to talk or share something, but they were hostile and said no. They treated me with an air of disdain and didn't try to conceal their hostility. It seemed clear that they heard something that prejudiced them in some way that they didn't want to resolve.

One of the women wore a brown and green sweater-vest with a horizontal pattern and had short, dark, wavy hair. She was neatly groomed, and was the leader of the pair. The other was blond and was wearing a peach-colored v-neck shirt with three-quarter length sleeves. The dark-haired one was a bit older, but the blond had a smooth face. They were both in wheelchairs.

In a parting shot, they laughed at my expense when someone wanted to pass behind me. Since I was facing them, they could see behind me, but I had no idea what was happening behind me. They didn't show any concern for my welfare or my space, so it was impossible to know whether I was about to be intruded upon from the rear. Suddenly when there was no space left, the blond girl spoke up, but played it like I was the social transgressor who had been rudely blocking someone, while she was the reluctant enforcer of decorum, sensitivity and social graces. As I began to move, I lost my balance, but didn't fall to the ground. They laughed in a ridiculing way over this, with the brunette being far more aggressive in her laughter. And the brunette praised the blond for her quick thinking in blaming me for the whole thing. In reality, these two ladies were blocking the door, and shouldn't have been.

This is the situation I've faced in public for two years. In public, I experience random aggression once the other person finds out who I am or what I'm doing. The random aggression often takes the form of withholding or obfuscating necessary social information, then blaming me and ridiculing me, often for not having the social information they withheld. In each case they don't acknowledge or take responsibility for their own true feelings of aggression or hostility toward me, nor do they share what has motivated them to behave the way they do. This is a primary cause of the whole problem. Sometimes what I'm doing is asking disabled dykes if they want to join a newslist so we can share information of importance to each other. But that's really rare that I'm doing that, it's maybe three or four times in my life. Most times I'm just asking someone their name, or asking what they think about an event, or I'm participating in a Jewish event, or I'm listening to music, or I'm at a dance, or I'm praying, or I'm studying, or I'm at a party. Basic stuff.

Nothing like this happened to me prior to Lenora publishing quite a few untruthful things about me after she was suspended from a Yahoogroup for lesbians. All of this bad behavior toward me in public began immediately following the Lenora situation, and it was especially prevalent in the way lesbians treated me in all shuls. Lenora isn't Jewish, so I wonder if a handful of shul lesbians capitalized on some of the libel and slander Lenora started.

Judy's Olive Branch to Paula

As I was leaving an event this weekend, Judy phoned my cell and told me she'd been communicating with Paula.

Paula wanted to post something to AbilityDykes*, which is the newsgroup Judy and I run. Paula has been suspended for harassing and flaming Judy Sierra and Nena Campbell, of LezOver45. They suspended her from both groups.

Anyway, Judy first offered to make the post on both lists for Paula. Then Judy offered to reinstate Paula so Paula could make the post herself.

When I heard all of this by cell, I was on the sidewalk about to have dinner at a restaurant with a new friend. So I wasn't really in a good space to talk, since I was in public, and was with someone. I just felt so exposed.

I felt really blind-sided by Judy. I was really struck by her timing. I had told her I wouldn't be available. I was really helpless to participate in a real discussion under those circumstances.

I didn't think Judy would ask Paula back without talking to me. Paula's been stirring people up, saying a bunch of things about Judy and me and AbilityDykes, and LezOver45. As you recall, Paula reacted to her suspension by starting a boycott against the two lists, claiming we discriminated against her and censored her.

LezOver45 has been particularly hurt by the boycott. Women in the 45 and over age group have chosen to make their posts on DykeOver45 instead. Bear in mind I'm not involved in this over 45 group.

So here's my best friend telling me she's talking to Paula out of the blue, and telling Paula she can re-join the lists. I didn't know what was going on. I got pretty frightened. I started crying a little.

The conversation went something like this, but part of the conversation actually happened the next day:

Me: I can't believe you would offer an olive branch without talking to me first. Why did you do that?
Judy: Paula wrote to me and I responded.

Me: We just saw each other two hours ago. You couldn't have waited another hour until I got home?
Judy: I wanted to deal with it.

Me: Were you going to put her back on the list without even talking to me first?
Judy: No, I'm telling you now.

Me: But you already emailed her and offered this, without even talking to me first. I mean the problem is you offered this to her on your own, without talking to me first. Why didn't you talk to me first?
Judy: I just wanted to see what she would say. I wouldn't have put her back on without talking to you first. I don't really want her on.

Me: So you told her she could get back on the list, even though you knew you weren't going to let her on? Why did you do that?
Judy: I just wanted to see what she would say. I don't know if I would put her on or not.

Me: Do you think Paula has continued to violate our safety guidelines without apology, and shown no remorse, and has even escalated her flames and harassing behavior, and has actually done things to get the suspension extended?
Judy: That's not how it works. I suspended her for 30 days, I checked the calendar, the suspension is over.

During the course of the conversation Judy starts to tell me she doesn't care about the disability list for lesbians anymore, and I started to feel so sad. I care about our community and I don't want to be the only one who does. I felt frightened because this seemed like such a sudden reversal from Judy. It just seems so out of character for her. We hung up and promised to talk more later.

I had dinner with this new acquaintance but of course I didn't feel like socializing. I couldn't hold it together. I started crying during dinner. That was my best friend who just talked to me that way, and put me in a bad position and I was so sad, scared and hurt. I told this nice lady the story, and she was supportive, but I think she was also very surprised to learn all this was going on. I apologized for ruining her dinner.

Yahoo Asleep Over Christian Cyberbully

I'm upset with Yahoo for not stepping in to make a second owner of a Yahoogroup for disabilities after the first owner died -- even after a cyberbullying situation emerged following a post in the group.

Hours after I posted an announcement about this weekend's Krip Hop Homo Hop event in a local Yahoogroup for people with disabilities, I received this unsettling email in reply from a Charlene Freemantle*:

"Did you know that your father murdered your mother and made it look like suicide? EVERYONE KNOWS"

I forwarded Charlene's email to a friend, but got a failure notice that said:
"Remote host said: 554 we cannot accept this message because it appears to contain virus (#5.7.1)"

Naturally, I got scared that Charlene had sent me a virus.

This Yahoogroup for disabilities is one of the oldest and largest in the country; it's for all disabilities, ages, genders, races, sexual orientation, religion, etc. I want to see it remain as a healthy resource. Next I went back into the Yahoogroup and posted about what just happened. I said something like this:

"I don't know whether the attacker is targeting me for supporting an event that might be culturally African-American, or LGBT, or disabled. Nor do I know whether the attacker is targeting people of color generally, or AbilityDykes*, or me or Judy Sierra* personally.

But it's very wrong, and totally unsafe, and Judy and I both hope we can count on everyone's support to back us on that. We have a cyber bully in our midst. It needs to stop immediately.

If anyone has any information on who is behind this, please contact me and the [local] disabled listowners right away. If this has happened to others I'm interested in hearing about it.

Don't tolerate acts like this in our community.

And show your support by coming out and giving mad, mad love to AbilityDykes lunch and Diversifying Hip Hop."

Then I re-posted my info about the Crip Hop Homo Hop event, saying we weren't going to be intimidated.

I also sent Charlene a note:

"What you wrote is cyberbullying and it's not acceptable.

I got [a message] saying your message to me contained a virus.

Don't ever write anything like this to me or Judy again."

And I did some Googling on Charlene which turned up a post from her on a born again Christian website. She seems to be a real person who actually does have a disability.

Next, Ariana*, the moderator of the disability Yahoogroup, jumped in and speculated to the entire newsgroup that it must have been a spammer who had joined our group and sent me the harassing message about murder and suicide. I don't know why she said it was a spammer, perhaps just to reassure people.

Then Ariana sent me an IM. I can't re-produce that here, I don't know how to log that at the moment. But I explained to her the message was not from a spammer, it was our own wack member from our Yahoogroup for disabilities, and I gave Charlene's contact info to Ariana. I'm doing all this with the expectation that Ariana will boot Charlene from the list for being such a creepy, threatening schmuck who talks of murder-suicide and sends possible viruses when people post about Hip Hop. Order will be restored, everyone will be safe, etc.

Then Ariana drops a bombshell. She tells me that Yahoo hasn't given her moderator privileges yet.

So I need to back up. You see, the original disability listowner passed away a few weeks ago. Steve* was a quadriplegic, and he was respected by all, and he started the list years ago. I'm sorry to say I can't remember how he died. But let's face it, everyone with a disability has a short lifespan. Quads and paraplegics in particular die quite young.

So Ariana can't remove Charlene from the list because Yahoo hasn't given Ariana control of the list after Steve's passing. Yikes. So there's this nutty harasser out there with scary words and viruses, and no one can stop her from accessing our disability-related messages and our personal email addresses in the Yahoogroup because Yahoo is evidently out to lunch.

Oh, and Ariana can't accept new members to the disability group, or upload new files, or check for bouncing messages, etc.

Oy, it's quite an uncomfortable situation. It shouldn't be this way.

Every newsgroup really needs to have more than one owner, we know that. The groups I've run have always had two. But we really can't get too mad at Steve, he's passed away.

Yahoo bears some responsibility for the situation here.

I know Yahoo plays it like they're providing a "free service." But c'mon, Yahoo sells ads and makes us watch. That's why they do this. Not for free, but for money. It's their business. And we're their captive audience.

Doesn't Yahoo owe more than nothing to the people who sit through so many ads in their newsgroup technology?

How can we get Yahoo to add a listowner quickly?


(*I don't give real names because I'm scared about what's been happening on and offline.)

Psycho Donut Shop Mocks Disability for Fun and Profit

Are economic times really so bad that we now have a donut shop whose business plan is a mashup between fatty sweets, a theme park, and a mental institution? Apparently so.

The Psycho Donut Shop opened last month, and uses "a lighthearted insane asylum theme," according to this story in the San Jose Mercury News.

Several disability groups took exception to the donut shop whose profits come from stigmatizing, stereotyping and from poking fun at folks with disabling conditions. The advocacy groups authored a letter to the editor which ran in the IndyBayTimes.

I'm trying to imagine an immature, amoral, insensitive marketing team on a sugar high who wondered what type of themed playland would draw adults and profits to their donut shop.

I'll bet this is how the brainstorm session went.

"Let's see, what would be fun for adults?"

"Well, there's always pornography."

"No good, that's what the internet is for. Besides, how would we get the chocolate off the magazines?"

"We could make it a baseball fantasy camp then."

"I really don't think so, we'd hafta sell steriods, not cinnamon buns."

"Ok, I got it. For donuts? A cop theme. It could be like the roll call room, or lockup, or something."

"Interesting. What else?"

"Well, let's see, we could make it a Haunted House. Those are popular."

"Almost, but it only works during Halloween."

"I know, let's make it a Mental Ward. It's like taking the best of the Cop idea -- with the lockup and the guards -- and mixing it with the psycho stuff from the Haunted House."

"Yeah, a Mental Ward. That's it."

"But wait, won't people be upset?"

"Look there's always people who are just too sensitive. I'll bet if we had a Lunch Lynch, or a Potato Pogram, or Internment Camp Sushi, someone would get on our case about that, too. All we're doing is having fun, being lighthearted, and showing people a good time."

"Yeah, and maybe if we just mess with the disabled, that makes it even more fun."

"Right."

"So maybe we'll offer Autistic Appetizers? HIV Hot Dogs? Quadriplegic Quesadillas?"

"Sure! But let's see how the donuts work first."

Wait, isn't this a skit on the Comedy Channel? No. This is real, and it's here in our community.

The Merc piece says the donut shop founders got the idea after playing racquetball. I didn't know anyone still played that sport. The founders appear to be stuck in the attitudes of the past.

The donut shop has gimmicks like a photo-op in a strait-jacket, a "group therapy" seating section, and even has the employees serve customers while wearing labcoats and nurses outfits. The founders also consulted with pastry chefs to form a menu which includes donut creations like Massive Brain Trauma.

This is wrong.

As one commenter on the Justice For All disability rights blog asked, "Would those of you saying that a little humor is ok feel the same way if the theme of the donut shop was one of a slave plantation?"

No, of course we wouldn't be okay with it, and we'd shut the place down.

The owners of the shop say they were just trying to have fun, but a principle of comedy is that you poke fun at the powerful, not the weak.

Disenfranchisement is not funny. Illness, suffering, and prejudice are not funny. And ignorance causes suffering. So the way you work with that through comedic themes is by satirizing those individuals and institutions responsible for social ills. The social ill isn't disability, the social ill is stigmatization. So let's target those who use prejudice, ignorance or stigmatization to disenfranchise the vulnerable and to enrich themselves.

Good comedy mocks those who cause suffering. Good comedy does not mock those who are suffering. And neither does good business.

When these business owners mock, stigmatize and poke fun at mental illness or head trauma -- and invite others to join in -- this is social oppression for fun and profit. And it's wrong.

Don't support them.

The founders need to go back to the racquetball court and re-think their entire game plan.

On Social Disability, Power, and Empowerment

I really enjoyed this YouTube video from Canada's nightly tv show "The Hour" in which interviewer Hilary Doyle spends time with Jeff Wasserman, a prosopagnosiac. Near the end of the piece with Jeff, at around the 3-minute mark, Hilary disappears and re-enters the room with a woman who resembles Hilary. Er, at least the look-alike has the same dress and hair as Hilary. The Canadian journalist wants to see if Jeff can tell them apart.

Jeff is pretty sure he has identified tv personality Hilary correctly. Turns out he hasn't.

(Hey Jeff, I watched, and I thought it was the other woman, too. She seemed more energetic or something.)

That's where it gets good. Look at the short flash of emotionality by Hilary. She can't believe Jeff has incorrectly identified the other woman as her, and after she and Jeff have spent part of the day together, and well, she's Hilary from Canadian tv, for cryin' out loud. How could he not know her? Hilary doesn't verbalize it quite this way, mind you. I'm just giving her reaction some probable lines.

Yet even show host George Stroumboulopous says to Hilary later in the studio, "Wow, you were really bustin' that guy up." No she wasn't. She wasn't reading Jeff the riot act or anything. She just gets a tad involved sure, even though tv shows can edit that sort of thing out. Personally, I valued the honesty. Kudos to everyone at The Hour.

Now let's get back to our faceblind fella. I'm sooo not done yet. I'm just getting started.

Let's consider Jeff's reaction at the three-minute mark. He's not really emotional, he's just normal, he says he "can't believe" he mixed up the two women on camera. He kinda shrugs, and laughs in that mild, low-key way of his. He doesn't seem particularly embarrassed, or ashamed, or even very apologetic. He's a well-adjusted guy, why should he react that way? And I mean, really, in all honesty, what do you want him to do. Notice my lack of a question mark there. Later he says he's learned to laugh stuff like this off.

I'm magnifying this short, wonderful human exchange on the video, in order to make a few points. First, this is the situation that's re-played constantly throughout the lives of those who are faceblind. Only folks aren't as nice or as understanding or as sensitive or as prepared as Hilary or "The Hour."

Second, you gotta amplify this by all the numerous invisible conditions that create a disability of misunderstanding. Maybe you can begin to understand what it's like to live with constant, background misunderstanding. You begin to understand that's the disability. You add up several cognitive conditions, and you've got something akin to paralysis.

Again, Hilary was cool. And getting back to faceblindness, she was prepared to be misidentified by a prosopagnosiac. But other people can feel so put off by it, and they just can't understand. You tell them and they still don't get it. They act like we have totally misplaced an entire person.

And we shrug, either physically, or more likely, attitudinally or philosophically. It's not personal. And it's not like we can do anything about it. Why don't they just accept it. We'll try again next time we meet, obviously. And maybe you could help us out a little, right? And there's always laughter.

To help the situation, to accommodate for disability, people can learn to cue us without getting all bent outta shape (not that Hilary was bent out.) You can read my tips here, but a lot of helping is common sense and old-fashioned courtesy. Just tell us the truth about who you are, silly. Give us your name, and then remind us where we know each other. Don't forget to make sure you've got my attention first. Otherwise we just stumble along until we figure out how to identify you through body language, vocal tone, hair, and other clues. That could take two hours, or 15 meetings together, or it may never happen consistently at all, depending on just how faceblind we are.

I really dig this piece by "The Hour" as a teaching moment. It's cool on a whole new level. Sure, let's educate people about prosopagnosia, and let's educate people about all the unpronounceable conditions and invisible disabilities, why not.

Now, as a world community, let's take it to the next level. This is my third point. This is social disability. So let's find ways to show people how their reaction to disability is what disables us. Their reaction is what we're always having to adjust to. Since social disability exists, recognize that there's two parts to it -- yours and mine. You play a role here. Ya gotta take some responsibility for your role in making my condition disabling. And then you can help turn it around. When you empower me, I empower you, that empowers everyone.

Reactions on the part of others can really get in the way of their learning to normalize, accept and accommodate a disability condition. Pick any invisible disability or condition, and figure folks are going to be surprised, even when prepared, even when trained. And that's a best-case scenario: education doesn't perfectly reduce a reaction of surprise, disbelief and emotion, because when fully experiencing the situation, that immersion hits you -- the more fully-abled -- in ways that aren't simply intellectual or head trippy. And in the worst case scenario, when lack of education combines with lack of common sense, bad manners, and even character flaws or poor moral development, we encounter insensitivity, prejudice, exploitation, bullying, neglect, blaming, and much, much worse.

Again, Hilary is way cool. And so is "The Hour." I really appreciated her genuine, darn honest reaction showing how folks actually respond.

So it's all good. People just have to experience me a few times before they learn to go, oh, I guess it's normal that some people have an invisible disability or an invisible condition. And then they could go, oh, I see where that's social, and I am part of society, so I can see where I play a role here. And then they'd have an "aha" moment and go, gee, I'll refrain from harming, and I might even start helping. Tapping into empowerment, you discover it's an unlimited supply.

What You Can Do to Help Those Targeted by Bullies

This is a continuation of the last article I wrote about bullying in the lesbian community. This piece focuses on how a witness or third party can help those targeted by an abuser.

It's a quick sketch or list of what To Do and what Not To Do if you want to help someone who's being bullied, or if you want to help someone who's experiencing psychological violence. If you need a definition of bullying, check out my last post, which used Tim Field's definition -- geared to describing workplace bullies, but with much that applies to general bullying, psychological violence, and relational aggression.

Some of what I suggest is specific to helping and protecting a member of a vulnerable population, as I have cognitive difficulties resulting from a head injury.

I wrote this pretty fast. I hope to have other ideas in the future.

Ok, here we go.

Do This right away:
--Validate my experience.
--Protect me.
--Ask me what I need, and think in terms of interventions that would make the Red Cross proud, and things which would be helpful under extreme trauma or PTSD: soup, a blanket, an arm around the shoulder, a kleenex to cry into, a wash cloth on a swollen face, a good night's sleep.
--Encourage me to eat.
--Check on me often.
--Reassure me that one day this will end.
--Tell me that you'll be there for me, and then demonstrate that by actually being there for me.
--I might not be able to rally enough to get out of the house and join you in a worthy activity, so kindly consider coming over and sitting with me.
--Tell me you don't approve of the bullying behavior.
--Tell others you don't approve of bullying behavior.
--Tell me I'm not to blame, that I didn't invite it, and that I didn't provoke it.
--Call for safety in the community.
--Let me know that you know this is abuse and psychological violence.

As I begin to comprehend, and as I deal with the fog, continue to Do This:
--Help me name what's happening: psychological violence, psychological aggression, psychological harassment, emotional abuse, internet bullying, undermining social relationships, destructive interpersonal misconduct, ethics violations, professional conduct violations, etc.
--Help me name what enablers are doing: minimizing, distorting, denying, making excuses, etc.
--Remind me that bullying isn't a conflict, it's abuse.
--Remind others that bullying isn't a conflict, it's abuse.
--Acknowledge limits of conventional wisdom ie, "therapy, conflict resolution, and ignoring the bullying are not going to make you safe, nor will this end bullying, which is the result you need and deserve."
--Suggest specific action I can take to end the abuse.
--Encourage me to educate myself properly about bullying, mobbing and the effects of abuse.
--Invite me places.
--Show concern for my safety.

As I take action to get it to stop, continue to Do This:
--See what you can do to help me document the situation, or support my efforts to do that.
--Consider following up with me about documentation and appointments.
--Consider accompanying me for support when I visit attorneys, police, clergy, other people at the job, or other intimidating professionals.
--Be savvy about the bully's tendency to counter-claim that she's the victim.
--Help educate yourself, me and others.
--Encourage me to obtain proper and appropriate support, anti-bullying support groups, attorneys, police, cameras, documentation.
--Encourage me to avoid support from inappropriate avenues, the bully's boss, the bully's good friends, the bully's family, the bully's business partners or project partners, etc.

As I recover physically, spiritually and emotionally, continue to Do This:
--Validate my experience.
--Invite me places and accompany me.
--See what my needs are.
--Suggest getting outside and taking walks in safe areas.
--Suggest soothing activities like baths, or meditation, or soft music, or whatever the target has found comforting and sustaining.
--Continue to protect me.
--Be open to my interest and transformation toward spiritual meaning.

As we as a community recover, continue to Do This:
--Invite me places and accompany me.
--Back me up when I call for safety in the community.
--Identify bullying behavior and enabling behavior with correct terms.
--Where appropriate, help author a professional or ethical code of conduct that includes anti-bullying language.
--Help enforce the code of conduct.
--Help hold offenders accountable.
--Help keep an eye on vulnerable and under-served populations.

...

Next comes the list of what not to do. This list comes from actual comments or explanations of people's decisions and attitudes. Although these often are direct quotes, others are approximations. This may typify what folks say when they want to justify enabling, since very little of this comes from supporters of the bully. Where I was able to, I tried to give examples of how some statements directly contradict each other. This was easier than you may think, since often the two sides of contradicting advice would be given by the same person, which surprised me. Also, I've tried to take particular care to document the pseudo-spiritual and pseudo-therapeutic stylings that are out there. I find them rather fascinating, misguided, and sad. It sure hasn't been fun to experience this cacophony. Sometimes it's as bad or worse as the bullying itself.

When you talk to me, Don't Do this or make similar denying, or distracting or unhelpful statements:
You: "Just ignore it."
You: "Don't give me any information about what's going on for you, I don't want to know."
You: "I'm really busy at work right now. I'll probably be busy this whole quarter. That reminds me, can you volunteer to help me on my project? I sure could use it."
You: "I'm not here to meet your needs, you know."
You: "I'm not going to help you."
You: "People have lives. They don't want to get involved. They just want to stay out of it."
You: "What's your part?"
You: "Have you been looking at what you did to cause all this?"
You: "Have you looked at your patterns?"
You: "What did you do to bring this on?"
You: "Have you looked at how come this keeps happening to you?"
You: "You're just needy / complaining / upset / having a crisis."
You: "What you're describing just is not bullying."
You: "So what if it's bullying, it's not illegal."
You: "What, are you in junior high?"
You: "This is just a conflict."
You: "You two just don't get along."
You: "This is just a bad breakup."
You: "Your personalities are just so different."
You: "No one can keep you away from synagogues / music performances / or parties just because of threats of harm / mobbing language / refusal of association / asking you to leave / telling you you're not welcome. Therefore, if you're not going to these events, it must be because you don't really want to go."
You: "If they treat you that way, why would you want to go there anyway?"
You: "We're all so sick of lesbian drama."
You: "I think both sides are in the wrong."
You: "This type of drama has been going on in the community since the 1970's."
You: "I've heard worse."
You: "Since you have a cognitive disability, how do you know you're not the one who's bullying others?"
You: "Hey, I've heard complaints about you, too."
You: "She says she's the victim."
You: "The bully says it was you who abused her."
You: "You can't let her (the bully) push you around, use your physical size."
You: "If you want my support, or if you are disappointed that you don't have my support, then you are guilting and manipulating me, and therefore it's you who are harassing me."
You: "If you are uncomfortable with our friendship because I am able to work closely with the bully, that's too bad. I am going to keep doing it. I am able to have good relationship with the bully and you are not."
You: "I doubt that what you say about her bullying you is true. She (the bully) has a professional title, or a home, or standing in the community, or many friends, or a degree in peace work, or a degree in spiritual work, or a degree in therapy, or some other important symbol guaranteeing and authenticating her."
You: "Everyone knows she (the bully) is a joke. No one pays any attention to her. So just consider the source. It's not a big deal."
You: "I'm sick of your victim crap."
You: "Why didn't you stand up for yourself sooner?"
You: "There's nothing I can do."
You: "There's nothing anyone can do."
You: "We can't legislate human behavior."
You: "Nobody has to be nice, nor can we force them to be good."
You: "It's not bullying. It's just people sharing their feelings about you."
You: "She (the bully) is simply a passionate person."
You: "You're really putting too much passion into this."
You: "We all have our problems."
You: "Who are we to judge?"
You: "So just stop working there."
You: "So just stop using the internet."
You: "So just don't go to parties where you might run into these people."
You: "So just lay low for a month."
You: "Just pull yourself together."
You: "Just make the best of it."
You: "This is what psychotherapy is for."
You: "If you don't like how it feels to be treated this way, go to therapy and deal with those feelings."
You: "Instead of complaining about others, learn to accept others, and tolerate each others' differences."
You: "Aren't you a yogini / meditator / torah student / 12-stepper ? You're not being very spiritual."
You: "Aren't you supposed to be a community leader / peer counselor / mentor/ trainee ? You're not being very insightful / professional / mature about all this."
You: "I don't like that you sound so angry."
You: "This doesn't feel very good to me, to hear you talk this way."
You: "You're so upset. Relax. Let go of it."
You: "This is simply a matter of your perceptions. If you change your viewpoint, you will change your life."
You: "Everything is an illusion."
You: "Who died and put you in charge of morality?"
You: "Yeah right, you're the sole source of virtue."
You: "Two years ago, you were really upset with me for a few sentences. I'll bet you've done that again and forgotten."
You: "A supporter of the bully said you were loud on the phone and you complained. You're the problem."
You: "Why are you taking your private problems public? That's not right."
You: "This is just gossip. That's not right."
You: "You know, once we're adults we're supposed to just pick up the phone and talk things over.
You: "This is between you and her. I'm not involved. And I don't wanna be."
You: "You're escalating everything by taking this to corporate / bosses / witnesses / police / attorneys / the public / the board of directors/ the national board of oversight of whatever."
You: "The bully has a problem with you. And this has happened to you more than once, since your disability. Doesn't that say something about you? It's you. You're the problem."
You: "Life is a series of lessons. Have you learned any? It doesn't sound like it. Have you learned what to do differently in the future? I don't think so. Have you learned what you could have done that would have prevented it?"
You: "Look, the community is so much broader than you realize. Hardly anyone uses the internet, or goes to parties, or dances, or volunteers, or does activist work, or plays music, or goes to synagogue. You can easily find a new community within the community."

Ok, that's the list. I suppose the one that's my favorite example of an absurd remark is:
"No one can keep you away from synagogues / music performances / or parties just because of threats of harm / mobbing language / refusal of association / asking you to leave / telling you you're not welcome. Therefore, if you're not going to these events, it must be because you don't really want to go."

It's just so illogical. What does it say about a community that uses this type of silly thinking, to support such a dangerous and hurtful situation?

I work really hard to deal with my cognitive situation. What in the world are others working on?

Introduction to Understanding the Bullying Epidemic

This article is born of firsthand experience being the target of adult bullying and relational aggression in the lesbian community; in lesbian volunteer communities and our projects; and in spiritual community such as synagogues. Bullying and psychological violence is due to a problem with the aggressor, not the target. Numerous social factors magnify the epidemic of bullying in our communities. Specific common sense steps can and should be taken to support those who have been bullied, and to help ensure safe, moral, healthy community for us all.

Laws and professional codes need to be tightened and enforced in order to guide appropriate behavior in our communities, particularly on the part of our bosses, but also on the part of teachers, clergy, therapists and other workers in the caring professions. Complaints of bullying need to be taken seriously, investigated properly, standards enforced, with bullies held accountable.

Bullying is a unique phenomenon in that frequently three parties and not two parties are involved. The parties are the bully, the target (not a victim) and the third parties such as witnesses. These third parties may be enablers, or they may be protectors of the targets, or they may be enforcers of prevailing norms of cultural virtue, or anywhere along this continuum. The phenomena and response of the third party is of primary significance in stopping bullying. Due to the importance of the three-party dynamic, neither therapy nor mediation is typically an appropriate avenue for stopping bullying. The key to stopping bullying is likely to have its roots in the previous paragraph.

Factors such as enabling on the part of third parties make bullying and its effects worse. These attitudes are often supported primarily by ignorance about what bullying and abuse is, and what it is not. Additionally, enablers may not know what enabling is, either. Enabling is often accompanied by an attitude of powerlessness over what can be done, sometimes with fears of social, financial and legal retaliation to those who speak out. The attitude of schadenfreude cannot be overlooked as a factor in enabling. And perhaps most significantly, a lack of meaningful intervention sometimes finds its intellectual, moral and spiritual roots in "idiot compassion" which was discussed in a truly great teaching by Karma Yogini here.

Other socially relevant factors in bullying include lack of protection for certain vulnerable populations. For example, those who are living with disabilities that affect cognition or affect one's ability to communicate and advocate are likely targets. The elderly are another probable target.

Of relevance is the scenario and background for workplace-related bullying. Workplace bullies typically act out when held accountable for their own shortcomings, inadequacies, or bad behavior. Some workplace bullies are threatened by their targets skills, or popularity, or innovative ideas.

Unfortunately the lesbian community is not immune to sexual misconduct and sexual harassment. A woman who says no to another woman's sexual offers, may be targeted for retaliatory relational aggression, which is a form of bullying.

The bully discharges her own feelings of aggression on to a target. In yet another layer, the bully attempts to involve third parties in isolating the target from social, emotional, spiritual, collegial, or professional support. The bully uses and exploits her relationships in business or social networks. The web can often play a role in this.

Today bullying is magnified or intensified by the influence and power of the internet. The internet effect is significant because online communication is instantaneous and unregulated. Additionally, internet bullying reaches the target where she reads email and accesses social networking sites, such as previously safe areas, like the home or even the bedroom. Furthermore, those who live with disability may be more likely to socialize and communicate online. And some populations and special interest groups may make heavier use of the internet in order to self-identify and to connect, such as the LGBT population or some spiritual groups. For those in these impacted groups, attacks on one's internet persona, reputation, and work may be more critical and damaging.

When a bully uses many of these weapons such as relational aggression, the internet, and threatening the financial or professional livelihood of the target, the isolation and suffering can produce psychiatric injury, including complex Post-Traumatic Stress Disorder. A target may develop suicidal thoughts, and suicide can sometimes result.

Understanding bullying can provide a glimpse into the human heart and condition. As a society, it's our moral mandate to develop practical, effective approaches to handling aggression, psychological aggression, and bullying. Tim Field, a pioneer on bullying and a world-renowned expert on the subject, believed "bullying was the single most important social issue of today, and that its study provided an opportunity to understand the behaviors which underlie almost all conflict and violence."

Here is Field's comprehensive definition of workplace bullying, however, much of this is relevant to bullying and to psychological violence generally.
"Bullying is a compulsive need to displace aggression and is achieved by the expression of inadequacy (social, personal, interpersonal, behavioral, professional) by projection of that inadequacy onto others through control and subjugation (criticism, exclusion, isolation etc). Bullying is sustained by abdication of responsibility (denial, counter-accusation, pretense of victimhood) and perpetuated by a climate of fear, ignorance, indifference, silence, denial, disbelief, deception, evasion of accountability, tolerance and reward (eg promotion) for the bully."

What I love about Field's model is how he identifies counter-accusations and pretense of victimhood that sustain bullies. He associates this with denial and abdication of responsibility. He is absolutely right to place this behavior as part of the bullying definition and characteristic.

The workplace culture of bullying is surprising and significant. Field cited surveys from the UK and the USA which showed that those who worked in the caring fields are at the top of the list of bullied workers. This suggests a staggering, unconscionable possibility: the caring fields employ huge numbers of bullies.

Why do bullies work there? What is it about the culture of caring that shelters bullies? I have thoughts about that for a future post.

Make sure you check out the next post, about the specific things you can do to help someone targeted by bullies.

I didn't use a lot of links in this article, as I have a head injury and right now am not the best at footnotes and detail. I hope to add better citations in the future.

Look over these statistics on bullying in the American workplace, from a 2007 study by Zogby International.

--Bullying is four times more common than either sexual harassment or racial discrimination.

--37% of the American workforce has been bullied.

--72% of bullies are bosses.

--Only 3% of bullied targets file lawsuits. 40% never complain.

--Women are targets of bullying more frequently than men, and in 71% of the cases where women were targets, the bully was also a woman (this was in a heterosexual setting.)

--Bullying is stopped by the target leaving 77% of the time.

Facing Internet Bullies

I'm being bullied and I'm experiencing relational aggression and psychological aggression. It's been going on for at least two years, but it's intensified over the past three weeks. I explained my motive and purpose for writing about this subject in a previous post here.

Let me bring you up to speed. On Wednesday, my best friend Judy Sierra* and I found several messages on Craigslist that seemed to be defaming and libeling us. The first was from Ricki Black* asking for a boycott of a Yahoogroup for Lesbians that I co-founded, LezOver45*. I don't really have much to do with the group, I've moved on to other things. For those just joining the blog, Ricki was the woman who threatened me and warned me not to go back to synagogue, thus prompting me to file a police report and post about it here.

Another Craigslist message was from Lenora Whitley*, who was suspended from the over45 Yahoogroup. Lenora's Craigslist message called me a thief because of that suspension. I wrote about it here.

We found more Facebook notes by Paula Rubenstein*. As you remember, the moderators suspended Paula for 30 days from the yahoogroup called DisabilityDykes*, and from the LezOver45 group, because Paula violated the rules by flaming the moderators, and because they felt harassed by her. And you probably also remember Paula is a woman I once dated and dumped.

On Paula's Facebook page, she called her suspension "censorship" and tried to get the community involved in speaking out against the disabled, Jewish dykes who run these groups -- and boycotting and resigning from these groups, saying it was discrimination against a disabled, Jewish dyke. Oy.

One of Paula's friends, Doris Finkel*, the drummer and musical director at a local left-leaning synagogue, responded on Paula's Facebook with a promise of support for Paula. Paula told me Doris Finkel is a former lover of R Rachel and they're still close. I blogged about R Rachel here, but the succinct version is she hadn't been willing to identify herself to me, even though I told her I'm disabled from a head injury and I couldn't recognize faces.

Getting back to Doris, all the moderators of the LezOver45 group then received Doris' email where she told us she would publicly denounce us and she would ask others to boycott us.

Nena Campbell responded to Doris' email with words that said basically nothing. She's so good at that. We didn't make her the head moderator for nothing, you know. Point is, she didn't present the moderator's side at all. She didn't present any side. It's like she's the Dean of the College of Middle Management-speak. Can you tell I flunked outta that school?

Yet another lesbian newsgroup called Sapphisty published several defaming and libelous posts about yours truly. Originally the traffic was posed as a question: why are there so many redundant groups for lesbians?

Ok, let's take a comedy break and look at that one.

Cuz we don't get along, silly. We're lesbians! We sleep with each other. We sleep with each other's best friends. We sleep with each other's best friend's enemies.

Then you know what we do? We refuse to sleep with each other.

And finally, we do both. We sleep together, we refuse to sleep together. We sleep together, we refuse to sleep together. And then we start all over again, only with a new person. Cuz we think it'll be different if we try our pattern on somebody new.

We take that formula and we go right down the list widdit: friend, enemy, friend of the enemy, enemy of the friend. There's no end to the permutations of frenemy sex, and frenemy sex refusals.

Now back to the concept of oneness. Maybe it's the grand solution.

So why can't we just have one list? And one political party? And one newspaper?

Why can't we?

And why can't we have one factory, one restaurant, and one approved sexual position?

Ok, I'll take a crack at it.

Isn't queerness itself a defiance of this type of thinking?

And doesn't this kind of solution just smack of a generic, singular, totalitarianism- for-the-hip?

And didn't we used to associate that with neo-fascists? Or Republicans? Or at least conservatives?

But lesbians are saying this?

Oh, well, I guess it must be okay, then.

That's the spirit, kids. That's just the sort of sputtering incoherence that makes the left strong.

Or maybe it's all of America, dropping faster than a falling SAT score, more powerful than a really strong cellphone battery, and able to leap tall objections of a world community united against quantitative easing and printing money from nothing.

But I digress.

Back to online bullying. Gradually the tone of emails published on Sapphistry changed. Pretty soon LezOver45 was being trashed. Then I was being called a thief all over again.

Here's what some anonymous RJ said:
"[we] stole the list because one of the people who helped Michelle with the tech part for about 10 minutes deleted her name as an owner and stole the list. We all know who did this so I don't gotta name her but you guys know who i mean.. now everyone feel like they gotta choose..."

Here's what Lenora said:
"[the list] was stolen from me"

And then Lenora said:
"I did have stern words for [Erin] the night before the theft, over her continuing abusive phone calls."

And then Lenora said:
"[the other list] was born of a theft..."

And then Lenora goes on to say that the women on her list:
"have been deeply sorrowed to see another soul suffering due to unnecessary power grabbing by [Erin]"

All of this happened in, like, two hours. It was intense.

You see, more than 1,000 women are getting all this sent to their inboxes. But they're only getting one side, and it is at variance with the truth, to say the least. It's libel and defamation, to say the most.

They're seeing me, Erin Teller, a person with a cognitive disability, getting painted with a criminal label because some moderators hold women accountable for their actions. Over the course of two years, two women have misbehaved in our digital sandbox, and so we suspended them. We gave them a time-out for adults. And they had a tantrum. Yeah, we're tigers. Better watch out. We give time-outs.

Just look at these two women, an attorney and a PhD, getting tripped up and MacGyvered out of power by someone like me, a woman who can't remember her own zip code, or recognize her own mother, or find her way home from her own driveway.

I'm the victim here. And so is Judy, a woman with Multiple Sclerosis. I mean the stress of an online bullying makes her lose her ability to walk.

So after having practically 19 nervous breakdown, I posted to Sapphistry, the list with the most traffic, and the widest membership. It went a little like this.

"Wow, I sure didn't want to write this. Unfortunately, this has reached a point where I've had several conversations with police, and filed a report for threats made to me by friends of a suspended member, and I'm in the process of choosing between attorneys because I now need protection, from lesbians, over email. Sheesh.

So please, kindly cease and desist... on Sapphistry, DykeOver45, Craigslist, Facebook, and elsewhere, or I will take action for libel, defamation of character, intentional infliction of emotional distress, and whatever else the suits recommend. Ok, buttercups?"

Then I explained why the moderators suspended the members. It embarrassed me to hafta put that out there. I alluded to my briefly dating & dumping Paula (obviously she wouldn't be reacting this way otherwise.)

And I said it's been rough for us and I've been frightened. I asked people to get on with their lives and to have a little compassion

So I guess you could say I answered the question I raised about myself in a previous post, about whether I had the courage to denounce this online bullying. I had the strength of Arjuna, after all.

In response, Paula changed her Facebook page. She took down the awful things she wrote about me on her wall.

However, now that I'm calling what's been happening to me libel and defamation, Paula turns around and says on her wall that she's the victim of libel, hinting at legal action against us, or me, I dunno know which.

...

I promised I'd practice Yoga with Judy today, cuz she's taking her midterm tomorrow. And I was so sick all day. I've been taking these suppositories so the headaches don't make me puke.

So we did the Yoga. Durga fed us the best meal -- organic and ayurvedic. I was so grateful.

Even though I'm going through this horrible thing with the bullying. And even though my health is so fragile with the headaches. And even though cognitively I am so slowed down I couldn't decipher any street signs on the road with Judy today (she drove.) Still, I had lotsa moments of peace today.

Even with all that, I can hardly wait to meditate and to pray and to see the sunset and to let go and unclench from all the twists of mind.

On the drive to Durga's we passed through the rolling hills of wine country. Judy had something to say. As a result of everything Paula's put us through, Judy tells me she hates Paula.

I don't hate anyone. I'm just trying not to puke. I just want to meditate. I'm still reading the parsha; still looking forward to shabbat.

I have zero interest in any of this stuff with Paula and Lenore. I feel drawn in only to respond to libel and character defamation that's being directed at me or at Judy.

Sometimes I think about why I'm different. Why I don't hate. Why I'm not even really all that mad.

I'm scared, but I'm not mad.

I totally forgive all these people.

Yes, I'm frightened of them. It's very, very stressful to be so scared all the time.

But all I really wanna do is meditate and do yoga.

On the spiritual side, sometimes I do tonglen. Other times I do mehta. I extend love to Paula and to Lenora when I do the mehta. I really like doing that.

I suppose from a Jewish perspective I'm praying for them to have love in their lives.

That's really their trouble, isn't it?

Time for that sunset now.


(* basically every name is fake cuz I'm being bullied and I don't feel safe at all.)

I Broke Up With Paula Rubenstein

This is a sensitive issue. Whenever I write about these issues, you can read more about my motives here. It's not my intention to harm or to embarass anyone. It is my intention to help others overcome abuse, bullying, power-tripping and disablism, even when done to us by our allies. The only way out is though it. We've just got to light a candle and tell our story, in the hope that we can make virtue stronger.

I dated Paula Rubenstein* for just a few weeks last year, and although she has many, many good points, I didn't like the way she treated me. I ended the relationship in December because of her emotional cruelty, and because I felt verbally and emotionally abused by her. And she pushed me. I cried a few times over all this.

I talked to her about all this, but she didn't stop. I was so sad and alone about this, but I'm proud of myself for ending things with her.

At the same time, I'm really afraid of Paula.

I knew Paula because I had been working as a volunteer on a project she was leading that pertains to disabled queers in a historical context. Paula is a paraplegic and uses a wheelchair, but in her case the paralysis is incomplete and she can actually walk. Paula is retired, owns a home, has a cottage she rents to a tenant, has a PhD, and once worked as some kind of therapist. She has many friends. In other words, she's well-connected and has power and voice.

She is a member of a left-leaning synagogue led by the rabbi who did nothing when I complained of relational aggression I experienced in retaliation for turning down some sexual offers by lesbians, one of whom turned out to be the "out" lesbian rabbi. I told part of that story before.

Back to Dr Rubenstein. Paula's good friend Robyn Britebart* was the project's Assistant Director, and at first both Robyn and Paula didn't want me to quit. I was very integral to the project.

I don't want to say too much about that. I'm afraid. But I really contributed a lot.

The same thing kept happening with Paula. And some promises to me weren't kept. I told Robyn, but it didn't stop.

The last straw was Paula pushing me twice more.

So just a month after breaking up with her, I quit the project. That was in January.

I was glad I got away from her. I consider myself lucky it didn't take me longer to see all this.

I am afraid of her.

I didn't know what she'd do to me next.

I'm not mad and I'm not looking to get back at her; I just want to get away from her.

And I want her to stay away from me.

The thing is, Paula could be anyone. She's just a dance. And I don't wanna dance with her anymore. Not that way.

So I'm learning some new steps and I'm trying them out.


(* I don't give real names due to a series of incidents online and offline.)

New Internet Bullying

Yesterday a friend of mine, Judy Siegal*, was the target of a very disparaging note on Facebook. She is probably my best friend in the world. She's got multiple sclerosis. I went over to her apartment and stayed with her.

The person who wrote the Facebook note shared it with quite a few people, and some of them have shared it with others.

The author of the note is Ricki Black*, the same person I wrote about in an earlier post here. Ricki is the woman who told me I better not go back to synagogue, and that many communities are angry at me, and that I'm not wanted, and that I'd better watch my back.

Late yesterday night, Paula Rubenstein*, a woman I dated briefly last year, posted a disparaging note about me on her Facebook wall. She added additional disparaging posts about me to her Facebook wall this morning, and sadly, a few of her friends responded to support her.

I know what you're thinking, are they teen-agers?

These women are 50 years old and they're acting this way. It's really sad. I wrote about Paula in a post here.

I've been upset about it, and I'm concerned and even a little scared when I realize that decent people are getting a strong dose of all that, yet they don't have accurate information to counter it with.

Today I'm a little sick and nauseous from the after effects of a migraine. But I have suppositories to control vomiting and I took one.

Certainly there are physical, emotional and social effects of what Paula and Ricki are doing. But what really concerns me is the spiritual side of it.

When people mistreat me, slander me, defame me, threaten me, mock me, I ask myself what's the spiritual way to handle it?

Should I fight back? Do I need to defend myself?

Is it spiritual to fight?

Is it spiritual to let your name and the name of your friend be defamed, and to allow a community to become riled up, and to do nothing when bullied or lied about?

How does one practice non-attachment under these circumstances?

How do I practice Yogic and Buddhist principles around this?

If my true interests are meditation and yoga, and I seek enlightenment, how does engaging in these worldy conflicts advance that?

In following Yogic and Buddhist ideals, am I following the right virtues?

If I want to meditate all day and do yoga, then shouldn't I move to a temple and do it there?

Last night Durga and I spoke by phone and she gave me a pep talk about the Bhagavad Gita. Durga is a classmate from Yoga Teacher Training, and the Bhagavad Gita is one of our texts. It's a 2,500-year-old allegorical spiritual story, and even Mohatma Gandhi has written about it. She reminded me of Arjuna's inner conflict on the eve of war against his family, his teachers, his friends. He didn't want to go to war. He preferred inaction. He was upset and confused and confronted Krishna about this.

"How can I wage war against my family and my teachers?" is the essence of the young man's question to Krishna.

Another of Arjuna's questions is, "Why can't I just do nothing instead?"

Krishna answered in a way that allowed Arjuna to see it was his duty to go to war. He helped Arjuna to see the world would fall out of balance if the young man did not restore order, justice and truth.

You just don't attach to that war's outcome.

Do I have the strength of Arjuna?

To Make A Difference

What really concerns me is the spiritual question. How do you go through an experience like this from a spiritual standpoint? Do we stick our head in the sand? Do we hide in therapist's offices? Do we play iPods with wind chimes and flutes and chants -- until we drown out reallity? Do we meditate until we find Samadhi? Do we throw back a handful of Prozac, or alcohol cocktails, or smoke medicinal marijuana all day? Do we lose ourselves in Torah or in religious ecstasy? Do we find sexual partners and do nest-building?

Or do we speak out on behalf of creating a safer, healthier community for us all?

If we speak out, won't others tear us down? Won't we inspire jealousy from the Old Guard Lefties and Handlers and Allies?

How do we speak out in ways that really educate, and in ways that provide tools to shape our independence, and build community, and perhaps shed some of those who make their living off us not with us?

And on a personal note, what does any of this have to do with meditation or Yoga, or any of the other things I really care about? For me, this advocacy can sometimes feel like a real intrusion, and in some ways, I can feel trapped into viewing it as a waste of my time on this earth.

I start to think, I just want to minimize this time suck, and focus on more meaningful things.

On the other hand, I find meaning in this. I'm not here to vent, nor to do self-analysis, nor to power-trip. I'm not here to embarass anyone, or to harm anyone.

I'm here to make a difference.

It's my aim to contribute. It's my purpose to help teach about the subtle, yet institutionalized forms of disablism, prejudice, ignorance, imbalance of power, psychological aggression, bullying, internet bullying, relational aggression, enabling, jealousy, competition for resources or competition to become "the voice" of the community, especially as found among the LGBT community, the spiritual community, the healing community, the disability community, the political left, and our allies.

My goal is to empower each other to overcome it.

What You Can Do to Help the Prosopagnosiac

Ok, Let's say my name is Erin Teller. If we know each other, come up to me and greet me. It's the most helpful thing you can do for someone with face blindness. Remember the prosopagnosiac is entering every social situation not knowing who's there. Imagine how you'd feel if everyone you encounter for the rest of your life kept a paper bag over their head all the time.

Here's how to greet someone with face blindness. Approach me and say my name. Then say your name. Then tell me how we know each other.

Here are some good examples. Do this:
You: Hi Erin, it's me, Emma, from swimming at Lakeview park.
You: Hey Erin, it's Gladys, from the Women Over Fifty Club. We met at that cabaret show at the Elk's Hall last summer.
You: Oh Erin, good to see you. It's me, Wendy, I'm a friend of Willa's. We all went to that LGBT comedy show in San Francisco together, right before Pride.
You: Erin, you may not recognize me, because I cut my hair. But it's me, Shamika. I'm the person with the big lemon tree. We made meringue with Alex.
You: Erin, I don't go by Zip anymore. Now I go by Zap. From skateboarding, remember?
You: Shabbat shalom, Erin, it's me Rebekah, from Rabbi Alan's class. Come sit with me.
You: Om, Erin, it's me Shakti, from Laughing Tree Yoga. Put your mat down here by mine.

After you introduce yourself, let me take a beat or two so I can recall the memory you're describing. It may take another moment for me to see your physical type, to see what you're wearing today, and who you're with. I need to associate that with your name and with the memory you described. Not everyone with face blindness is slow, but my face blindness was acquired from a head injury, so I need you to give me time to process what you're saying.

Let's talk about some other situations. Let's say we're traveling to a social event together. If you know or can predict a few people who will be there, clue me in to their names, prior to our arrival. Let's say we're on our way to an event, and you predict Linda, Lyn, Lynette, Lenore and Loretta will be there. You might want to ask me if I want to go over who is who while we're still in the car. If I say yes, be patient while I rehearse it a few times.

In that example, I used similar names to indicate possible complexity, but that's just a courtesy or a kindness to someone reading this, in order to help you understand confusion better. Face blindness has nothing to do with similar-sounding names.

Let's take another situation. If I'm with you at an event, and I ask you a question about someone's identity, try to do this: For example, if I say, "who's that woman in the red shirt, standing by the cookies, sorta short, and she's talking on her phone?" A truthful answer is wonderful. "That's Jackie," is great. But "I don't know, I've never met her, but I think she came here with Miranda," is fair enough. And if the truth is, "I don't know, I don't think I've ever seen her before," that's perfect, too.

When I ask about someone's identity, please don't answer my question with a question. Don't do this:
Me: Is that Connie, carrying Betty's guitar?
You: Why, do you play guitar?
You: Why, do you think they're dating?
You: Why, are you attracted to her?
You: Why do you ask?
You: How come you wanna know that?
You: What makes you think it's Connie?
You: Do you want to talk to her?
You: Aren't you still playing violin?
You: Are you still having trouble with names?
You: What, is it really my responsibility to help you?
You: Is this another lesbian drama?
You: If you can learn who I am, then how come you can't learn who she is?

For many reasons your questions don't work for me: they don't give information that's been requested; they don't let me know whether you know the answer, or if I need to ask somebody else; they place a new demand on me to give information to you; your question may have me so distracted that I may not even remember what information I was trying to learn in the first place.

But if you really have a question for me, or a question about my condition, please answer my question first. Then ask whether I feel comfortable answering your questions. I think etiquette writers would back me on that one. And please understand that my question is one of concrete fact or common knowledge. Your question is more inward or personal, and presumes a level of intimacy that may exceed my boundaries.

I acquired face blindness from a head injury, so it's already hard for me to pay attention and learn. If you answer my question factually, I'll still have to work to absorb what you're saying. I'm sure the last thing you'd want to do is make things more difficult for people like me.

And some questions are really statements in disguise. Some of those statements disguised as questions are not helpful or solution-oriented. Folks disabled from a head injury and acquired prosopagnosia really have a tough enough time as it is. We could use a little kindness.

There are other answers which are not very helpful or solution-oriented. I've heard responses that have really been hard to deal with. So don't do this:
Me: Is Karen the woman with the long blond hair, sitting on the couch with those two women?
You: You really go for the ones with the long hair.
You: She's taken.
You: I thought you weren't here to hit on women.
You: You're always asking who everyone is. Just enjoy the party.
You: I don't really pay attention to someone's hair, I like the inner person. I'm spiritual.
You: I see that the woman she's talking to is eating chocolate-covered strawberries, and I'm allergic to chocolate, and anyway they don't treat the workers who pick the beans in a very nice way, people need to get a grip and start using vanilla.
You: I need coffee, water, tea, a napkin, a banana, artificial sweetener, less ice, more ice, less music, more music, better music, no music, a bathroom, to know why that clock isn't working, to check my voicemail, to re-paint my kitchen soon, for you to be more understanding of my needs, etc.
You: You think that her hair is really blond, but it's not. It's colored. It disgusts me when women do that.
You: Believe me, I know all about your problem. My mother had Alzheimer's, and she couldn't recognize me. I just can't go through that again. Good bye.
You: Hmmm, let's see, you're asking me if that's Karen. You've asked that before. You really miss Karen. You need to get over it.
You: Karen is a really common name. There's always lotsa Karens around. If I had a kid I would name her anything but Karen.
You: Listen, I'm not the information exchange, you know.
You: You're telling me what to do. That's so controlling.
You: Ask her yourself!
You: She's not Jewish.
You: I don't have to tell you that. I don't have to answer. It's not my job to make your life easy. Your problems are not my responsibility.
You: Whatever. I don't wanna participate in your drama.
You: Everyone has trouble with names or faces. Get over it.
You: That's funny, you always know who I am. And you know Susan, Jane, and Wendy. You know half the room. Doesn't sound like some big problem to me. Unless you make it one.
You: A lot of people don't like her. Let's get away.
You: A lot of people don't like you. Get away.
You: Your disability really impacts you socially. That must bring up a lot of feelings for you. I'm a good listener.
You: I don't see what's so hard about this. Hey Karen. KAREN! Nope. Guess that's not Karen.
You: Hey you. Yes, YOU! Erin here was just asking about you. She really wants to meet you.

Those are examples of unhelpful responses I've had to deal with. Sometimes I can recover gracefully. Other times those responses actually create a new set of problems for me.

So please answer my questions factually and normally. Don't make assumptions, don't psychoanalyze, and don't launch into distracting new topics or adventures. Remember that in acquired prosopagnosia there's likely to be comprehension and memory issues in addition to the face blindness. I need your compassion and your help. You may want to consider providing information beyond what I've asked, if you think it's helpful.

Here's some great examples. Do this:
Me: Is Karen the woman with the long blond hair, sitting on the couch with those two women?
You: No, it's not Karen. It's Tamar.
You: Yes, it's Karen. Her hair has really gotten longer.
You: Sorry, I don't know who she is at all.
You: Oh she's got blond hair now, ok. Yes, that's Karen.
You: Karen Smith is on the couch. Karen Jones is in the kitchen.
You: That's Beth. And she's good friends with Mary, the Mary who says mean things about you.
You: I think you're thinking of Karen Smith, and this woman really looks a lot like Karen Smith, but she's not. She's Victoria.
You: Yes it's Karen. You and I and Karen all went out for coffee Thursday. She's the one who rides her bicycle everywhere.
You: I don't know that woman on the couch. And excuse me, but I also don't know you, either. I'm Renee.
You: Hang on, I'll be right with you, gotta catch this call, this falling chip, this running child, etc. Thanks, did you find out if she was Karen? Because I've met so many people here myself today, I just don't know. Maybe you could tell me.

That's easy, right?

If you've agreed to help me with recognizing people or with learning new people in a social situation, then hang out with me and see how it feels for you. But be cool about it. And just remember, I can't help it.

Let's take just a couple more situations. Say you're organizing a social event. You'll want to consider ways to make your event accessible to people with disabilities. I'll bet you've taken great care to choose a location that's wheelchair accessible. You've probably checked to ensure that the bathrooms are wheelchair accessible, too. For really huge public events, some of you have hired sign language interpreters, or you're at least you're open to that. And perhaps you've even thought about creating some program literature in large print. Maybe you've got ushers or greeters, too. Although this is fabulous, and it's certainly overkill for a typical potluck, it doesn't make the occasion accessible for someone like me.

What makes an event accessible for me is name tags. They're inexpensive, they're effective, and everyone has fun coloring their own name. They work great for face blindness.

Another fabulous idea is to appoint someone to be a social buddy. The social buddy can answer questions about who's who. Once you start to offer this, you'd be surprised who might take you up on it. There's almost always a newcomer in the room, and often there's another who's terminally shy. The baby boomers are aging; they're losing their hearing, their sight, and their memory. So it's not just prosopagnosiacs who can benefit from some social identifiers.

Let's take one last situation. Let's say you're a community leader or an educator and you're involved in events. And you find out people have played a trick on someone with acquired prognosia. Or you learn someone keeps doing some of the aggressive things from the Don't list.

You might first consider replacing ignorance with information. Then you may want to model compassion, understanding, and helpfulness. You may also want to get their side.

Sometimes people don't want to be recognized, or they may think it's cute to play games, or they may have personal issues. What you need to know is this. If someone refuses to give their name, or they deliberately give fake names, this is frightening, not funny. It's disablist, cruel and unacceptable. It's taking advantage of someone's disability.

When someone repeatedly says cruel things from the Don't list, a person with face blindness may not consistently recognize who that person is, in order to stay away. This can be very frightening. This is another form of taking advantage of disability. And it's disablist, cruel and unacceptable.

These situations are like throwing obstacles in front of a blind man. Maybe worse. And they're not to be tolerated. I don't play games with my safety. And I don't want you to, either.

If you find out about disablism in your community, speak up. You wouldn't tolerate racism, sexism, or anti-semitism from your friends. Don't tolerate disablism, either.

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!