Twelve Things I Want You To Know About Faceblindness – and why you should stop appropriating our experience

Stop it.  Just stop it. 

I’m talking about appropriation, manifested as your weird expressions of solidarity when you encounter someone with faceblindness.  

There’s a name for this condition, which I was diagnosed with many years ago.  It’s prosopagnosia (from the Greek prosopon for face and agnosia for ignorance).  In my case, it’s a genetic, congenital condition, although it can also be acquired with damage to the brain.  It’s awful, and it’s getting worse.

Last week, I enthusiastically kissed a public servant I met once and hugged a woman I really do not like.  I am routinely cold with friends until I work out who the hell they are and I fiercely detest the moment when I am expected to introduce one person to another person, because you can bet your bottom dollar I have no idea who one of them is.  

People’s faces also serve as an important identifying feature in memory, so we faceblind people have difficulty keeping track of information about people. 

It’s more common than you would think.  Brad Pitt has prosopagnosia.  But hey, I am not writing about me, or Brad.  I am writing about you. 

News flash.  If you are bad with remembering faces, it doesn’t mean you have prosopagnosia.  And if you insist that it does – but if it does not impair you on a daily basis - you’re being offensive.  Even if you want to express your solidarity or compassion for someone who you think you can empathise with.  You’re appropriating or erasing our experience and it’s completely shit. 

Think of it this way.    


You meet a person with a severe skin condition and you say to them, ‘Oh my God, YES.  I get eczema at least once a year.’ 

Or you meet a person who tells you they have OCD and they tell you that they have been unable to leave the house for a week because of their rituals, or that their hands are bleeding from overwashing.  If you tell them that you must have that too because you match the pegs on the clothesline, well, you’re an asshole.  (If you follow that up with ‘can you clean my house’, you deserve to be ritually slapped by someone who has to sequence and count activities and I really hope it is more than fifty times.)

You’re 'a little bit autistic' because you like Big Bang Theory and you don’t really like some people, you’re pretty sure you have sensory processing disorder because slamming doors makes you jump.

Or you go to a lot of conferences, meet a lot of people, can’t easily remember people’s names and then claim that you have an impairment.


Unless it’s something that impacts on your daily life, it’s not. 

And if you’re telling people that it’s the same thing, you’re minimising (and appropriating) the experience of that person’s disability.  

Yes, it’s a disability.  In my case, one of the more significant of my disabilities.  It causes me daily anxiety and I thoroughly detest (and fear) the embarrassment that comes with this condition.  

Here are twelve things I want you to know about prosopagnosia and how it affects me.

Twelve Things I Want You To Know About Prosopagnosia

1. Yes, I can recognise many people.  This is because I have learned to distinguish people based on cues, hairstyle, voice or body shape.  I am grateful for being a crip – other people’s mobility aids are easy to remember, as are combinations of unusual distinguishing features. 
      One friend has a purple wheelchair, enormous (and magnificent) breasts, wears glasses and usually has the same haircut.  Others have canes or assistance dogs or particular impairments that help me recognise who they are.  It’s marvellous. 
   
2. If you are bad with names or faces, you don’t necessarily have prosopagnosia.  There’s a test below* that is an indicator (not a full diagnostic assessment) to help you understand whether you have the condition or not.  My scores are attached.  If you are bad with remembering people’s faces, please don’t tell us that you also have the condition – unless you do.
   
3. Never cut your hair into a new style or unexpectedly dye it or get new glasses or lose weight.  Please and thank you.
   
4. If I can remember your face, it doesn’t mean that I won’t incorrectly ‘recognise’ your face when I meet a stranger in the shops.  I have chastised a young woman I thought was my daughter because she was in the shops and not at work.  She was pretty surprised.   
   The good thing is that you’ll never know – unless I have mistakenly identified you as someone else I know.  In which case you’ll also be pretty surprised.  Especially if you have a job and if I am yelling at you for not being at work.
   
5. Do not, for the love of whatever God you worship, be one of those sad-sweet-smilers who smile in solidarity at wheelchair users.  If you’re trying to jolly me out of being physically disabled, please don’t.  Quite apart from not liking being your good deed for the day, I’m then going to have an immediate shopping centre/main street crisis.  Do I know you?  Did I once sleep with you?  Do I hate you?  How do I react?  Should I stop, and will it be rude if I don’t?  Or should I keep going, and will it be weird if I do? 
   
6. Most amusing and awkward prosopagnosia moment – being asked to be a matron of honour, then being invited to meet the husband-to-be.  His face was a mask of horror when he opened the door and it took me ever-so-long to realise why.   I had slept with him, a long time ago.  It dawned on me eventually.  I can (ironically) imagine the look on my face when I realised who he was.  
   
7. I am always going to mask prosopagnosia, and I have learned coping mechanisms to do so.  I am either friendly to everyone, or to no one.  I’m an expert in masking my dysfunction.  If I meet another person and I am with someone they do not know, I will always fail to introduce them entirely, or I will step back a little and say, ‘Oh!  Do you know each other?’  I do this routinely, whether I recognise you or not (chances are that I do not, but you’ll never know).  I avoid places I could run into people I know and I fiercely hate conferences, especially those where people wear lanyards which can easily flip your name badge.
   
8. I’m more likely to recognise you in context.  I once knew a woman who I talked to every day for five years.  She was at the counter of our nearest fuel station and we became very friendly.  She had a particular hair colour and style and wore a uniform.  When she left her job, I had no idea who she was, although she stayed friendly.  It was almost six months before I realised it was the same woman – and only because she’d worn a name badge at the petrol station and then someone had called her by her (unusual) name in her new workplace.
   
9. I don’t generally know how old more mature people are or whether they are considered ugly or attractive or plain, because I have to look past their face and consider their character.  I don’t really care about what’s on the outside, because it gives me no clues as to what is on the inside.  It’s perhaps a good trait (shared by blind and vision impaired folk) that we don’t take people on face value.  Your face doesn’t hold any value for me at all.  I am going to notice if you have no nose, but it’s not going to influence my opinion of you.
   
10. Prosopagnosia is much more common in autistics.  Also, some people with prosopagnosia are mistakenly diagnosed with autism.  That is because we often rely on tone of voice to infer friendliness, joy, anger or unhappiness – your face gives us no clues. 
    
11. I may slowly realise who you are because you’ve given contextual cues.  I might overcompensate by being overly friendly or suddenly colder.  Or you might notice that I’ve done this with other people.  Helpful tip – I am already dying of shame, guilt and abject embarrassment.  It’s not going to help me if you smile knowingly and say, ‘You had no idea who I am, did you?’  I am not going to be impressed with your magnificent recognition of the impact of my impairment and you’ve just contributed to my distress – in fact, you’ve just become my major problem and it’s likely to impact on my opinion of you.  Don’t do it.
    
12. Criminals, I’m a good person to rob.  Feel free to snatch my purse or mug me in the street.  I am never going to pick you out of a line-up or help a police sketch artist so that police can identify you. 
    
    You’re welcome.

*There’s a test called the Cambridge Face Memory Test – it’s not a suitable replacement for a full diagnosis, but it’s a good indicator.  

Here are my results. 

Cambridge Face Perception Test.  I scored lower than one out of every ten people who took this test.
Vocabulary.  My score was three and the average score was four.   I scored higher than four out of every ten people who took this test.
Mind in the eyes.  My score was four and the average score is 22.  I scored lower than ten out of every ten people who took this test.
Social Connection Survey.  My score was three and the average score was six.
Find out more about the test and research here.  

 
Image description:  A woman smiling enthusiastically.  The text reads, ‘I smile because I have absolutely no idea what’s going on’.