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Living with prosopagnosia.

Putting a Face to Prosopagnosia

Educating others about your condition requires knowing about it yourself.

Periodically, I receive email messages from people wishing to get my advice or feedback on their own independent projects related to prosopagnosia. I'm always happy to share of my own experiences. In such cases, however, I try very hard to keep myself outside of the realm of "creative" and firmly planted in the role of "consultant".

A few months ago, I was consulted by Hugo Keijzer on a script he was writing for a short film which I recently learned won a Golden Camera Award at the Eindhoven Film Festival in the Best Film category. (The trailer is available for viewing on Youtube.  The full length short film is available for viewing here.)  My consultation provided some "reality checking" for Mr. Keijzer's script. Interestingly enough, it took me at least three reads over the script before I was capable of understanding the conclusion of the film, and that is without the visual. Having viewed the short film, I can say I was surprised at the relative ease I had following the story visually, but even so, I found myself rewinding the film to examine one scene in particular, the one where Alfred fails to recognize the inspector the second time.  Also, because of the different hair styles used, without prior knowledge of the script, I doubt I would have been able to realise an important component of the plot.  I really enjoyed consulting for, and watching, this film which wound up tackling prosopagnosia very well from a variety of different angles, including living with it, dealing with people who are unafamiliar with it, and the lengths to which true friends will go to make themselves more easily identifiable.

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I typically do this kind of consulting work at no charge. Yes, it is time out of my schedule to do this, but I'm also of the belief that one of the best ways I can help build a better understanding of prosopagnosia is to correct any well-meaning-but-inaccurate misconceptions about it. More often than not, what I find is that people who undertake such projects really do mean well, and do a lot of research into the topic. They tend to get a lot of information and experiential details correct, but usually, there are some subtleties which they either miss completely or for which they do not understand the social significances.

For example, a few years ago, I provided consultation to Anna DeMers in what was originally a one-person play but which she subsequently expanded into an ensemble performance which she entitled Solo Face. When Ms. DeMers first contacted me, she had a lot of questions. She wasn't too familiar with prosopagnosia other than what it meant in a fairly literal sense. She was looking to write her script from scratch. Rather than tell her what her character or characters should do or think, I began by posing to her some very specific questions to get her thinking about the nature of the challenges a person with prosopagnosia might experience. When her script was in draft stage, I provided some guidance about the dialog and events unfolding in the script.  There were several minor corrections I was able to make.  One scene required at least four separate drafts before it felt real to me. Subsequently, I was able to go see a production of the ensemble version of the show, and I was very moved by how it came together and how it depicted some of my own experiences so well.

While I am always honored when people wish me to be a consultant, when I do this kind of work, I have to be really careful. These productions are not, after all, intended to literally mimic my life experiences. Instead, they are authored to paint a picture of what having prosopagnosia could be like. Given the voluminous advocacy work I've been privileged to be able to do over the years with regard to prosopagnosia, I feel pretty comfortable with delineating what are my own experiences from the experiences which other people with prosopagnosia have shared with me. As a result, I tend to use a lot of qualifiers for situations in which I know there are significant differences among and between people with prosopagnosia.

This is even more important when the potential audience of a project is substantially larger. CNN, having a potential audience of millions of viewers world wide, came out to film me and, on February 6, 2007, they aired a segment which included a discussion of prosopagnosia which I played a significant role in. (Unfortunately, the video segment is no longer available online, but there is still a reference to it here.)  Admittedly, they glossed over a few points of significant importance, but on the whole, given the time slot available for that story, I thought they did a remarkable job.

Although I have done a lot of advocacy work about prosopagnosia, I neither expected nor intended to become the poster child of prosopagnosia. Nonetheless, it was a role I felt very comfortable finding myself in. Because of my willingness to share of myself and my own experiences, many other people have come forward to also share their experiences of living with prosopagnosia. In so doing, I believe all of us who have prosopagnosia, collectively, have played a significant role in bringing prosopagnosia into the mainstream consciousness.

I know this has benefited many people. In email correspondence I receive, it is not uncommon for me to read about adults of all ages just now learning that their difficulties with facial recognition are not just them being "lazy". Instead, as I knew all along, there was nothing "lazy" or "wrong" with them. In many cases, as it turns out, their difficulties with facial recognition are perfectly normal, at least for people with prosopagnosia. That knowledge is often a huge relief to them.

As for myself, I have no memory of not having prosopagnosia. When I wound up in a coma for six weeks as the result of a fall from a crib at the age of sixteen months, my parents were on the lookout for anything that might occur as a result. The first vivid memory I have of failing to recognize somebody was from the age of about 6 or so.

I've had many "prosopagnosia moments" since then, each one feeling incredibly embarrassing. However, unlike when I was a child, I now know that my experiences aren't so rare after all. Instead, they are fairly common, dare I say "normal", for people who have prosopagnosia. While that does not take away the embarrassment and annoyance I feel at my own social limitations, it does make the burden of dealing with them feel a little less onerous. I know that by sharing of my own experiences with others, a weight has been lifted off the shoulders of many other people with prosopagnosia. How do I know? Many of them have told me.

Knowing that I have helped so many other people has made the time commitment I have made to this deeply personal project truly worthwhile. I am proud of what I have accomplished.

At the time of this writing, I may only be 34 years old, but because of my experiences, I have learned that the secret to life has nothing to do with what we do on this planet. Instead, it has everything to do with what we leave behind. I hope that the legacy I am leaving behind regarding prosopagnosia will be remembered long after I am gone.

 

©2012 Glenn Alperin

Teaser image ©2012 Glenn Alperin

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Glenn Alperin is a writer who has prosopagnosia.

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