Wednesday, May 18, 2011

One Person's Thoughts on Living With Faceblindness

I am part of an online support community for Prosopagnosics. We have regular discussions about living with PA.  The entry in italics below was posted during a discussion on whether we think of ourselves as disabled or not.  For me, it depends on the day.

"When I went to bed last night I had a long think about how different
it is to not be FB.  I thought specifically of my friend down the
road, who is just over a year older than me and has similar

Here are some points:

My friend never meets someone in the village or the nearby town and

doesn't know if she's met them before or not.
She never has a conversation while trying madly to work out who the
other person is.
When someone comes into her shop she knows if they have shopped with
her before, and often she will remember something about what they have
bought previously.
She never gets confused watching tv, movie or theatre because some of
the characters look much the same.
If she leaves a crowded room, when she returns she can spot who she
was talking to before she left.
She has never confused two people because they have the same gender
and similar hair.
She has never had to wait until she's back home to have an "aha
moment" about who she was talking to earlier.
She has never worked with someone for an entire afternoon and then
failed to recognise them the very next day.
She doesn't suffer an extreme disorientation when someone close to her
radically changes their hairstyle.
If she went to school reunion she would recognise most of her
ex-classmates even though she left school more than 20 years ago!
She has never failed to recognise her own mother/sister/aunt etc
She has never stood waiting for someone only to find the other person
is waiting for her just a few yards away.

What this all leads me to think is that our state of confusion is so
normal to us that we don't actually know how extreme it is.  If my
friend was to suddenly become FB she'd be devastated.  Even when she
developed coping skills she would still look back with a sense of
intense loss.

Whether we call it disablity or not I think is just semantics.  You

could say the same about dyslexia - if the dyslexic person isn't at
this moment having to deal with reading or writing they are not
disabled in this moment, but they still qualify as disabled for

-Autiste Ruth
(thanks to Autiste Ruth for allowing me to re-post this)

The above statement in bold letters is as striking to me as a bang on the head. It reminds me that even when I think I am having a good day recognizing people, through the use of coping skills, I really have no idea if that it so.

1 comment:

Anonymous said...

Thanks for the post. I think the word "never" is probably an exaggeration. But I would also add:

She does not know the anxiety of having to walk into a restaurant to meet a group of people who are already there, worried they are staring at her waiting for her to come over while she stands there looking foolish, unable to tell which tables of people are her friends.

She does not know the anxiety of losing sight of her date for a moment then the panic of not knowing which man brought her to the dance/restaurant/concert/movie.

She does not have to fear walking into a meeting at work, or a classroom due to being unable to tell if the people there are her group or the wrong group.

She always knows which person at work is her boss.

She always knows if the person on her doorstep is a neighbor, relative, friend or stranger.

She always knows which children are hers in the park or when picking them up from school.

She has never been given a document to deliver to someone and unknowingly given it back to the same person.

She has never told a funny story or gossip about someone with no clue that she is talking to the person the story is about.