Prosopagnosia - Face Blindness: Background information when reading Holding Up the Universe

Prosopagnosia - Face Blindness

This article relates to Holding Up the Universe

Jack Masselin, the young man in Jennifer Niven's Holding Up the Universe, suffers from prosopagnosia, commonly called face blindness. It's a neurological disorder that affects the way people perceive faces – or more precisely, the way they can't. What that means is that Jack cannot even recognize his own face – as distinct from anybody else's – in a mirror. When a woman walks into his bedroom at home he has to look for clues – clothing, hairstyle and color, voice – to be able to tell whether it's his mother or some other woman.

Prosopagnosia (prosopon for face, agnosia for not knowing) is a disorder that affects as much as 2% of the general population, but estimates vary. So far there is no cure, which is not surprising because research has been sparse – there are only about 100 documented case studies worldwide in medical literature – and it has been difficult to find prosopagnosiacs on which to conduct research. Unless you know you have it, how can you volunteer to be studied? The Internet has improved researchers' ability to connect with subjects and more studies are expected to be forthcoming.

What we know is that it can either be acquired, from a blow or some other trauma to the head, or from a stroke, at any point in a person's life beginning in infancy. It can also be congenital, resulting, they believe, from prenatal brain trauma affecting the fusiform gyrus region, located just behind the right and left ears. In Jack's case, it likely resulted from a fall when he was six years old that required several stitches behind his right ear.

As with anything having to do with the brain, prosopagnosia is highly complex and symptoms may apply to simply facial recognition, all the way to species or object identification, to navigational problems. Many people don't even know they have it. If onset began early enough in life, a person has no way of knowing that the way they see faces is unusual. Most people, parents included, don't talk about how they recognize faces, they just do. So prosopagnosiacs develop clever strategies to identify people. But if someone changes hair color, or loses or gains weight, or in one way or another changes these "markers", the prosopagnosiac is lost.

Of course people with the disorder must find ways to adapt, but not surprisingly, many become reclusive and clinically depressed. Social situations can cause panic as identical face after identical face passes in front of them and they are unable to keep up with the kaleidoscope of indistinguishable visages. Others, such as Jack, become super witty, charming and breezy, but armed with quick escape plans should they feel pressed into identifying someone in particular.

Several well-known and successful people have or have had prosopagnosia including Victoria, Crown Princess of Sweden; neuroscientist Oliver Sacks; English comedian Stephen Fry, Steve Wozniak, co-founder of Apple; British playwright Tom Stoppard; and Chuck Close, American painter and photographer. Heather Sellers wrote a memoir, You Don't Look Like Anyone I Know, about her own experience with it. One tongue-in-cheek 2013 Slate.com columnist speculated that the ability to inflict people with prosopagnosia is one of Superman's superpowers. Why else, the author guessed, wouldn't the super observant journalists and photographers at the Daily Planet not recognize the bespectacled Clark Kent as the Man of Steel? Hey. It's a theory.

Image courtesy of prosopagnosiaresearch.org

Filed under Medicine, Science and Tech

This "beyond the book article" relates to Holding Up the Universe. It originally ran in November 2016 and has been updated for the May 2018 paperback edition. Go to magazine.