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.
Showing posts with label Strategies. Show all posts
Showing posts with label Strategies. Show all posts
On Social Disability, Power, and Empowerment
Labels:
Disability,
Disability Culture,
Disablism,
Prosopagnosia,
Strategies
What You Can Do to Help Those Targeted by Bullies
Labels:
Abuse,
Bullying,
Disability,
Internet Bullying,
Jewish,
Lesbian,
LGBT,
Psychological aggression,
Relational Aggression,
Spirituality,
Strategies
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?
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?
To Make A Difference
Labels:
Abuse,
Disability,
Disablism,
Lesbian,
LGBT,
Psychological aggression,
Spirituality,
Strategies
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.
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
Labels:
Disability,
Disablism,
Lesbian,
LGBT,
Prosopagnosia,
Strategies
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.
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
Labels:
Disability,
Head injury,
Humor,
Lesbian,
Prosopagnosia,
Strategies
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.
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.
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