7th September 2020

Science Prosopagnosia: The artist in search of her face

Science Prosopagnosia: The artist in search of her face


By Vibeke Venema

BBC World Service


image copyrightCORSO Film

Carlotta has never been able to recognise faces, neither the faces of other people, nor her own. Her condition, face blindness, has had a major effect on her life but has also given her a sense of purpose as an artist – to make self-portraits of the face she cannot picture in her mind.

Carlotta sits down to draw a self-portrait. The room is very dark, lit just by a few candles. She doesn’t need light, because she’s not using a mirror or a photograph – instead, with one hand she traces the contours of her face, while her other hand sketches the shapes on paper.

“It’s always a surprise when I see my drawings in daylight,” she says.

Her apartment is filled with self-portraits – about 1,000 of them, she thinks. Each one is completely different, and they have an otherworldly quality. Shapes overlap. Several heads may be projected on top of each other, sometimes upside down. In one, she has three eyes, in another six.

If she catches sight of herself in a mirror, Carlotta will think, “the woman looking at me is in my nightie and in my flat, so it must be me”. She will also recognise her hair – it’s what happens underneath those grey curls that’s a mystery.

Carlotta’s condition began to cause problems when she was a young girl, in Munich in the 1960s, though at first no-one really noticed.

“When I went shopping with my mother, or went to the doctor’s surgery, we would meet people who my mother clearly recognised, but I didn’t have any idea who they were,” she says.

“I was amazed that my mother could do this. I thought this was an amazing gift she had, of recognising other people.”

Often Carlotta would wait for her mother outside the shops with her dog, and follow the wrong person home, only realising it wasn’t her mother when they turned down the wrong street. She never told her mother why. “I thought it was probably a problem with me, that I wasn’t concentrating enough.”

So she relied on other clues instead. “I began to notice what clothes people were wearing, the way they walked, their voice or if they were wearing glasses. Everyone has their own way of breathing and their own way of moving, the way their clothes rustle, and that’s how I try to identify people.”

It was only when Carlotta went to school that she finally grasped there was something different about her. “It was really hard, because the secret of recognising other people’s faces that my mum had, I realised other children had as well,” she says.

Still, she didn’t tell her parents. She assumed that recognising faces was a skill, like tying your shoelaces, that she would master one day.

School was a brutal and horrible experience. Everyone looked the same to Carlotta. On one occasion she was sent to the staff room to collect something from a teacher.

“I knocked on the door of the staff room. A man was standing there, and I said, ‘I want Mr Schultz.’ I had to repeat this three times, and he became very angry with me. He said, ‘I am Mr Schultz!’ He’d been my first class teacher, but I just didn’t recognise him.”

She tried writing down all of her teachers’ defining characteristics – if they had glasses or a beard, what shoes they wore – but she also wrote down which teachers were friendly and which ones weren’t, and one day a teacher angrily confiscated the list.

During lunch breaks, Carlotta usually stood apart from the other children. The problem came when the bell rang and the teachers would come to collect their classes. Children would line up in the playground, but never in the same spot. “I often went back inside with the wrong class, and I didn’t realise until I got through to the wrong classroom. And obviously, if a child can’t recognise her classmates, then she must be stupid.”

Teachers reacted with anger and derision.

“They made me stand in front of the class and said, ‘You’ve got nothing but sawdust between your ears.’ Or they’d insult me: ‘You’re thick as a brick.'”

The children bullied her too. As a consequence, she withdrew from everyone. “I wouldn’t say anything out loud. I would just do my written work and didn’t really take part.”

image copyrightCORSO Film

image captionCarlotta touching her face and drawing

The school thought Carlotta had a learning disability and wrote to her parents suggesting that she be sent to a special school. But they knew this was unnecessary and ignored the letters.

At the end of the school day, Carlotta would run home at breakneck speed and immerse herself in books. She read everything she could, especially about nature, and fantasised about moving far away from everyone.

“I had this idea that I could go deep into the forest and create myself a sort of cave,” she says.

“There would be a cave for the kitchen, and a cave of books – that would be the biggest. I just really wanted to go deep under the earth into the darkness.

“Being with other people was difficult for me. I much preferred being in nature and being on my own.”

When she left school at 17 she looked for a job which involved as little human contact as possible. She loves horses, so she became a groom, until dealing with the horses’ owners and their children became too much.

After working as a truck driver and cement mixer, she took a job as a projectionist, which was both solitary and enjoyable. Science fiction films were her favourite, because the characters were more recognisable and the plot was therefore easier to follow.

“This issue I have with faces is really quite specific to humans. The faces of animals or aliens I find very easy to recognise!” she says. This doesn’t apply, though, to chimpanzees; they are too similar to humans.

In her mid-20s she fulfilled her childhood dream of cutting herself off from people entirely. She bought a boat and sailed along the Australian coast for a year, reading books and catching her daily meals from the sea.

image copyrightCorso Film

image captionCarlotta climbing the mast of her sailing boat

It wasn’t until she was over 40 and living back in Munich that Carlotta found out what her condition was called – quite by chance, when in the pharmacy she was handed a free health magazine.

“I just flicked through it, and this word, ‘prosopagnosia’, stood out. I really like unusual words, so I read on, and then they were describing this condition called face blindness.

“It was the most extraordinary moment, because it was the release of all my burdens. To finally have a name for this thing, and to be able to say: ‘I’m not stupid. It’s not that I’m not concentrating properly. It’s a genetic condition, and I can’t do anything about it.'”

  • People with prosopagnosia may avoid social interaction and develop an overwhelming fear of social situations. They may also have difficulty forming relationships or experience problems with their career. Feelings of depression are common.
  • Studies have indicated that as many as 1 in 50 people may have developmental prosopagnosia, which equates to about 1.5 million people in the UK.
  • Source: NHS

But if at first she was relieved, she soon became angry.

“My anger was related to the fact that no-one around me had recognised what was going on, and that no-one had been able to tell me that I had a genetic problem.

“I hope that teachers today are a bit better at understanding children, and often in schools there are psychologists who might spot these issues, but I’m talking about when I was at school 50 years ago, and the teachers were completely blind to what was going on with me.

“I think if someone had been able to recognise what was happening, it would have made the world of difference.”

By this time, Carlotta’s parents, who had adopted her as a baby, were dead.

“I would have liked to have shared this knowledge with them, and my difficulties from school would have been explained,” she says.

She was, however, able to have an interesting conversation with her birth mother, a woman only 15 years older than her, whom she had been brought up to think of as an aunt.

How she discovered this deception is an interesting story in itself.

At the age of six Carlotta had been sent to hospital for a small operation. It wasn’t explained what was wrong with her, so she listened carefully to the medical staff for clues.

She heard doctors referring to children on the ward as the “tumour-child” and the “hare-lip child”, whom Carlotta imagined had swallowed a live hare. (She worried that the the hare might not have survived.) Then they described Carlotta as “the adopted child”. She was terrified because she thought “adopted” was her illness.

“I asked the nurse if you could die from ‘adopted’. She said, ‘No, it means you don’t live with your real parents.'”

Twelve years later, on turning 18, Carlotta got hold of her birth certificate, and this named her birth mother as her “aunt” Susanne.

When she finally spoke to Susanne about prosopagnosia, Susanne explained that she also found it difficult to recognise people, though not as difficult as Carlotta. Prosopagnosia is an inherited condition.

The women live 500km apart, so they only meet a couple of times a year, but they have a close bond. They also look alike, although of course Carlotta can’t see the resemblance.

Carlotta says it was a “revelation” for her when she read in a book once that you could draw self-portraits by touching your face.

“The face is a hilly landscape that I travel with my finger and transform into a two-dimensional drawing. It’s not that easy, because I can’t see what I am doing,” she says.

Since then she has done little else, working on them so furiously, that sometimes she tears through the paper with her tools – she usually creates monotypes, a type of etching, and scratches on paper with knitting needles.

“Art was definitely cathartic for me – without it, I wouldn’t be where I am now,” she says. “In making art, and also at times in destroying it, I was able to deal with a lot of the emotion and the difficulties I experienced in my childhood, and now I’m not carrying them around with me any more.

“I can look back differently now, with more understanding for my teachers and my parents. I know that they didn’t know any better.”

Carlotta’s portraits have been exhibited all over Germany and caught the attention of Valentin Riedl, a brain scientist who decided to make a film about her.

image copyrightCORSO Film

image captionCarlotta and Valentin

“As a neuroscientist, I found it astonishing that because of a brain deficit, someone produced a new kind of art,” he says.

It took him some time to persuade Carlotta, a deeply reclusive person, to agree to be filmed, but eventually she did, and found herself opening up more and more.

“It was an incredible relief to be taken seriously, because that was what sometimes made me very lonely when talking to people: not being understood. It is more lonely than being alone,” she says.

media captionValentin Riedl asks Carlotta to draw herself by looking in the mirror (from the documentary Lost In Face)

They started filming Lost in Face in 2015, and finished last year.

During filming, Carlotta agreed to draw Valentin’s portrait, even though she finds looking at someone else’s face – let alone touching it – very difficult.

“For me, the face is something I can only look at very quickly,” she explains. “It’s like if you’re on a beach and someone’s getting changed to go into the water, and there’s that quick moment where they’re slipping off their underwear or putting on their swimming costume and you look away.”

Valentin also gave Carlotta her first brain MRI scan, which showed no damage – whatever makes her brain different from others is too small to be visible.

“Behind the right ear, there’s a region of the brain which is only responsible for processing faces,” Valentin told Carlotta afterwards. “Every face that catches your eye is identified by this region as a face, and then processed. In your case, this doesn’t seem to work.”

Prosopagnosia can’t be treated – if neural connections are not established, they can’t be created afterwards. Although it’s described as “blindness”, it has nothing to do with sight, but rather with an impaired ability to create the concept of a face and memorise it. Carlotta’s face-processing area can’t hold on to the information.

“She sees certain aspects in detail, that’s fine, but when she moves away, she forgets what she saw,” explains Valentin. “It’s a bit like if you have to remember what’s in a fruit bowl: you know there was a banana but you don’t really remember if it was on top or on the bottom, and if someone shows you a different fruit bowl, you might say, ‘Yes, it’s this one.'”

“I can’t recognise people’s faces because I can’t remember them,” Carlotta says. “I know me, but I don’t know my face.”

image copyrightCORSO Film

image captionValentin Riedl gives Carlotta an MRI scan

The condition doesn’t prevent her from knowing how another person is feeling.

“I can understand a person’s moods and facial expressions well, and that’s what I remember about them – their emotions, their feelings, the whole person,” she says.

“I won’t remember if someone has a crooked nose or the colour of their eyes, but if they cry or get very angry, that’s what stays in my memory.”

Now that she has got rid of her own anger, she has a new perspective on life.

“It’s wonderful. I feel like life can start now, in a way that brings me more peace,” she says.

She retired early due to arthritis and spends much of her time drawing, on a permanent quest to find her face.

“My art is an inner necessity for me,” she says. “I can’t help but make art, to feel my portraits and put them on paper again and again, and to keep going in search of my face, of what will escape my memory in the next second.

“I see it and I don’t remember it, I reach for it and the next moment it disappears – it is an ongoing process that can never end.”

Carlotta is a pseudonym. Follow her on Instagram

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