Written by Emma Miall
I appreciate her optimistic take on how it must be to live with face blindness. The daily struggle to recognise my friends, work colleagues and acquaintances is far less rosy!
You see, I have prosopagnosia – a neurological condition where the part of your brain that recognises faces doesn’t work as it should. In extreme cases, people with face blindness struggle to recognise their family members or their partner. It can be present at birth (congenital prosopagnosia) or result from brain damage (acquired prosopagnosia), as mine did.
I was only made aware of face blindness by a neuropsychologist when I was 22. Six months earlier, I had a right temporal lobectomy to remove a giant brain tumour. She was examining how my brain functioned without the right temporal lobe and hippocampus they’d unceremoniously thrown in the biohazard waste bin. In one test, she showed me pictures of people on flashcards and asked me whether I recognised them. There was nothing familiar about any of them. They were all fairly bland, generic people – similar to catalogue models.
At the end of the testing the neuropsychologist told me some of the cards were strangers, but many were famous people, and I wasn’t recognising iconic people like Princess Diana.
This was a huge shock. Surely I could recognise one of the most photographed women in the world? However, the more I thought about it, the more it explained a number of the quirks I had noticed during my recovery. I was suddenly having difficulty following television shows as I couldn’t recognise the characters when they changed outfits or locations. (This only got worse if it was a television show like The Sopranos where the majority of characters have slicked, black hair and talk in a Mafioso mumble.)
Oddly, I wasn’t sure that it would, because it seemed so very removed from me. Unnervingly, prosopagnosia can also make you feel an eerie disconnection from your own sense of identity.
Life was to become a series of social gaffes. I dreaded social occasions for fear of getting ambushed by unknown friends or acquaintances, and I still failed to recall famous faces. One of my most memorable blunders was when I attended the premiere of a documentary on the renowned euthanasia advocate, Dr Philip Nitschke. After the screening, there were drinks in the cinema bar and I was introduced to a greying, bearded man with glasses.
“Nice to meet you. What do you do?” I said.
“I help terminally ill people in incurable pain end their lives with dignity,” he said awkwardly.
The penny dropped. I had just sat through a 90-minute documentary on Dr Nitschke and didn’t recognise him in the foyer afterwards. (Prosopagnosia brings a whole new meaning to the expression “losing face”.) I still wonder if Dr Nitschke thought I had skipped the screening and had just come for the free drinks.
Unfortunately, worse was to come. One rude awakening happened in bed when I didn’t recognise my boyfriend.
I woke up to see a stranger lying beside me and anxiously asked him who he was. He said he was my boyfriend. I looked around the room and it was definitely my boyfriend’s bedroom. The man next to me had brown hair and brown eyes like my boyfriend, but only after talking to him, could I believe it. (Part of the difficulty of living with prosopagnosia is you can no longer trust your own perception. You must put blind trust in others and piece together what secondary clues you can from their mannerisms and what they appear to know about you.)
Prior to surgery, recognising faces was a seamless, integrated function I’d perform on autopilot. It is now a fractured, laborious, multi-stepped process that requires a lot of guesswork. I see people’s faces like a Guess Who? game board or a police identikit image. I see collections of very unremarkable features: two eyes, a nose, a mouth, skin and hair colour and accessories. I have to purposefully seek out their most unusual feature and tie it to their identity in my head. Tattoos, piercings, moles and any unique markings are welcome flags. Foreign accents and height are also valuable clues. For the most part, these secondary features get me to a place where I can often make an informed guess – especially when coupled with the all-important benefit of context. If I see people where I expect to see them, my system works really well. If a person dyes their hair or I bump into them somewhere I don’t expect, that’s when they become a perfect stranger.
“Hi Emma,” they’ll exclaim warmly. I will try to fake it till I make it. “Hi! What have you been up to?” I’ll say with forced familiarity. If it’s clear the game is up, plan B is always to come clean and say, “Sorry, I’m actually not sure who you are because I struggle to recognise faces.” Sometimes they’ll say, “Don’t worry, you explained this to me last time this happened.” Other times they will say, “Don’t worry, I’m really bad with faces, too” (which comes from a place of well-meaning, but really is the prosopagnosic’s loathed version of “You have Autism? We’re all a little on the spectrum, aren’t we?”)
These days, I don’t worry that I won’t recognise my husband or our two daughters, because I know them so intimately – the way they speak, the way they move, the way they behave, what makes them laugh and what makes them cry.
At school pick-up, despite all the little girls looking identical in their uniforms, there are only two who run at me, joyfully crying, “Mummyyyyyy!” (And there is unlikely to be a time when I would ever bump into them unexpectedly. They’re usually attached to my legs!)
Prosopagnosia occurs more often in Autistic people than non-autistic people. Notable face-blind Autistic people include author and advocate Yenn Purkis, who wrote of their experience in the 2019 piece I’m sorry, I have absolutely no idea who you are!, researcher Dr Emma Goodall and Google Labs Creative Director, Tea Uglow.
While neurotypical people can take my lack of recognition to heart, I find my Autistic friends don’t. They accept that I may not recognise them, not because I do not value their friendship, but because my perception of faces is different, and “trying harder” to perform more like the cognitive majority doesn’t work when you’re wired differently. They accept that I experience the world differently and I am doing my best – because they too experience the world differently and are doing their best.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.