Note: This article also appeared in the Prosopagnosia Research Center Summer 2012 Face 2 Face newsletter.
Prosopagnosia (also known as face blindness) is a disorder characterized by a profound difficulty or inability to recognize faces. I have discussed this disorder in a few previous posts. You can read a list of signs and symptoms of the disorder here. You can also watch a recent segment about the disorder on 60 minutes.
Prosopagnosia research has made a lot of progress over the last decade. That progress has critically depended on the interest and engagement of people suffering from prosopagnosia and their family members.
In this post, I want to talk briefly about the way citizen science has driven prosopagnosia research, on behalf of all of us at the Prosopagnosia Research Center.
What is Citizen Science?
Citizen science is science done by everyday people rather than professional scientists. Citizen scientists generally have less training and access to resources compared to professional scientists, but they have their own unique set of observations that can contribute to scientific progress in sometimes unexpected and critically important ways. Many of you reading this are citizen scientists. You take part in experiments, share information about yourselves, but most importantly you pay attention to and share your experiences. Our understanding of prosopagnosia took a leap forward at the point that scientists began acknowledging people with face blindness as citizen scientists, who understand their own abilities, experiences, and limitations and are willing to share that knowledge with the community of professional scientists in hospitals and universities.
From my vantage point as a face recognition researcher, I believe the contributions of citizen scientists created the field of prosopagnosia research as we know it today.
The Story of Face Blindness
There are probably many versions of this story, beginning in many homes across the world when people with face blindness began connecting with fellow sufferers through the internet. The version of the story I’d like to tell starts with Bill Choisser.*
A picture of Bill from his website, Face Blind!
Bill Choisser is a self-described “long-haired man in jeans” who lives in the San Francisco Bay Area and has suffered from deficits in face recognition his entire life. Bill spent many years as an advocate for prosopagnosia awareness. Bill grew up in an Illinois coal-mining town and found that he often recognized other kids by their jeans. He also found when making friends as an adult that he tended to gravitate to other long-haired men in jeans.
Bill didn’t realize he had problems with face recognition until he was in his 40s, sitting in front of the television one day with his partner Larry. They were watching a television program together and Bill expressed frustration that t.v. programs never showed enough of a person’s body and clothes. It was impossible to keep track of characters! Larry looked at Bill and said, “You don’t need all that, you recognize the characters by their faces.” To Bill, this bordered on absurdity. Faces were impossible to recognize and all tended to look the same.
Bill took it upon himself to start asking around and observing others to see if they relied as heavily on faces to recognize other people as Larry suggested. This made Bill realize that he was relatively unique in his inability to recognize faces. He went to his doctor and asked whether he might have some sort of neurological problem that meant he couldn’t recognize faces. “There’s no such thing” his doctor said.
At the time, the internet was in its preteen years (young, awkward, but with lots of potential) and people were increasingly becoming connected with others in growing online communities. Bill decided to post a message on a forum for neurological disorders. The message said: “I have trouble recognizing faces. Anyone else have this problem?” Then he waited. Soon, he was contacted by someone who reported the same difficulties. Then a second and third person contacted him. A year later there were about 30 people communicating over the internet who reported lifelong difficulties with face recognition with no clear medical explanation
At around the same time, Glenn Alperin, who also suffered from problems with face recognition was learning about a condition called “prosopagnosia” that he had come across in the medical literature. In his attempt to learn more about the condition, he too began looking for other potential sufferers on forums and through the internet.
Eventually Glenn and Bill met and, for the first time, a sizable community of people with prosopagnosia existed that could share their experiences with one another and reflect on what it meant to not be able to recognize faces. But “prosopagnosia” is an unfortunate word: complicated, difficult to remember, and impossible to spell. Bill decided that since people who can’t recognize certain colors are known as “color blind” it made sense that people who couldn’t recognize faces should be called “face blind”.
So, in 1997, the term face blindness was coined and is now an accepted term among scientists and sufferers alike.
At the time, the research community was virtually unaware of developmental prosopagnosia / face blindness (that is, face blindness not caused by brain damage in adulthood). The disorder, if it existed at all, was considered very, very rare. There were a handful of reported cases, and it was unclear to researchers whether their deficits may be explained entirely by some form of early brain damage that was difficult or impossible to see on standard CT or MRI brain scans. To any researcher studying prosopagnosia or face blindness, Bill Choisser, Glenn Alperin, and their growing face blind community offered a significant opportunity to learn about face blindness, face recognition, and the way the brain develops.
When they approached research scientists who studied face blindness, however, the response was discouraging. Bill Choisser reflects:
“None of the researchers we found had any interest in communicating with us. Some ignored us and some were condescending, while from their responses we could tell…we already knew much more about [face blindness] than they did.”
So Bill and others decided it was up to them to learn about the disorder and create
web resources for fellow sufferers. For example, in 1997 Bill created a website called
“Faceblind!” that described his own experiences with the disorder and his ways of coping.
Time passed, the community grew, but developmental prosopagnosia continued to be
thought of as an extremely rare, virtually unknown phenomenon. In 1999, Dr. Brad
Duchaine (then a graduate student) came upon Bill Choisser’s website and got in touch with him. “I want to work with you to learn about this disorder,” he said.
Brad Duchaine as a graduate student
Dr. Duchaine saw the opportunity, but, more importantly, recognized the importance of learning about face blindness with the community of sufferers. People with face blindness were collaborators: citizen scientists who could partner with professional scientists to learn (together) how and why face recognition was different for people with face blindness.
Citizen Science –> Scientific Progress
In the intervening years we’ve learned a lot about face recognition and face recognition deficits: that face blindness runs in families, how variations in other abilities seem to be related to face recognition deficits, and how face recognition is just different for people with face blindness. We are also beginning to understand how face blindness might arise from differences in the way the brain develops. Most startling, however, is the realization that developmental prosopagnosia or face blindness is surprisingly common. Based on recent data, Dr. Nakayama and Dr. Duchaine estimated that up to 1 in 50 people have face recognition deficits severe enough to qualify them for a diagnosis of face blindness. It’s not quite as rare as scientists thought! And all of these insights began with the face blind community and people like Bill Choisser and Glenn Alperin: people with a unique set of experiences, a healthy dose of insight, and the willingness to break new ground as citizen scientists.
We believe that scientific research works best when it involves a conversation between professional scientists and citizen scientists, like many of you. In the case of our face recognition work, this is a conversation between researchers and people at the front lines who have first-hand experience of face blindness. To help us understand this disorder and face recognition more generally, we ask for your continued collaboration: by observing yourself, observing your own experiences, and (when you get the chance) sharing those observations with researchers like us.
For more information, see my previous post on the way web-based cognitive testing has helped many people with face blindness learn more about their face recognition abilities.
You can also look at the recent Harvard Gazette article on TestMyBrain and citizen science.
Finally, check out this clip of Oliver Sacks talking about face recognition and his own face recognition difficulties:
Oliver Sacks on Face Blindness
* Thanks to Bill Choisser for providing information for this blog post. Bill Choisser would prefer not to be contacted with questions or comments about his story, but please feel free to contact me or leave a comment below.