Living in the dark
How one man has handled his descent into darkness
Susan E. Matthews • January 23, 2012
“Don’t worry about it — people whack me with their canes all the time,” Keith LePan assured me as I made my initial steps into pitch-blackness. This may seem like an odd statement, but under the circumstances, it was warranted. We were feeling our way through unfamiliar territory with canes as our eyes, which were rendered useless by the overwhelming dark.
As a visitor to Dialogue in the Dark — a museum on South Street Seaport in Manhattan where participants learn what it’s like to be blind — I knew that I would regain my sight when the tour ended. When we emerged from the darkness, Keith, my guide, would also regain some of his sight. But not all of it. And over the next few years, Keith will regain less and less sight as he exits the shadowed confines that make up the nontraditional exhibit. One day, he will only vaguely be able to discern when he’s in the dark and when he’s in the light.
Keith suffers from retinitis pigmentosa, a genetic eye condition that also afflicts his father and two of his three sisters. At age 12, when Keith was diagnosed, he knew he would eventually go blind. That’s what his doctors told him, and that’s what he watched his father go through. When Keith reached his 40s, his vision started to worsen. His peripheral vision disappeared, and at night he could hardly see at all. Today, at 52, he has constant tunnel vision. Within the past year, he’s started using a cane.
“I resisted it for a long time,” Keith said, gesturing with his cane as if it were a natural extension of his body. He felt it forced him to identify as a blind person, but he says, “I was the same person I always was.”
Also within the last year, Keith became a tour guide for the New York installation of Dialogue in the Dark, an international museum that originated in Germany and now has branches worldwide. The hour-long tour takes small groups of visitors through a series of completely dark rooms that simulate real-world experiences. At the New York museum, we walked through “Central Park,” took the “subway” and crossed a Times Square “street” — complete with the smell of a hot-dog street cart.
“I think people are hungry for experience,” Keith said, and Dialogue allows people to “actually put themselves into a different reality.”
The experience is rich with sudden realizations. In a simulated grocery store, I could easily identify a cereal box — except, what kind was it? But finding my preferred cereal immediately became insignificant when I suddenly thought about how I would figure out how to pay for it with cash.
These dilemmas are all part of Dialogue’s brilliance, according to Keith. “It’s based on this amazingly little simple idea,” he said, that allows people to realize obstacles of blindness themselves. “It cuts across every kind of age, race, economic — any kind of strata.”
As proof, Keith cited statistics from a recent study: five years after visiting, 83 percent of participants still remembered the name of their guide. Having just completed the tour, I knew this had to do with the immediate dependence that sighted visitors have on their blind guides. Keith was not just my guide; he was my guardian. When we met him in the dark, one of my fellow tour participants asked if he was standing on something. “I’m 6 foot 4,” he replied, surprising us — such a gentle person does not often come in so large a package.
An actor by training, Keith’s rich baritone voice fills the darkness. The tour is his script, and the participants are his audience now. Originally from rural Michigan, Keith studied acting at the University of Michigan and received a master’s in acting from the University of Florida. After he completed his degrees, he knew New York was the place for him.
“I just wanted to get the hell out of there,” he said of Michigan. “But you know part of that might have been wanting to run away” from the darkness he saw descending over his family, he said. His father was starting to lose his sight, and his sister had had major problems with her vision since age four. He knew his sight would eventually go too, but he wasn’t ready to let that define him yet. Keith says his decision to move was partially fueled by the perception that “a blind person was someone who really couldn’t contribute.”
Keith started working as an actor in New York, but after a few years, he shifted to the business side of theater, which he saw as a more stable career path.
As his peripheral vision started to fade, Keith found it more and more difficult to keep up with certain social cues required in his profession. “When I was working in show business, well, it’s all about presentation,” he said. “I’d be in meetings and social situations, and I’d be missing handshakes and things. It becomes very isolating.”
Despite having seen his family members lose their vision, Keith found it difficult to adapt to his diminishing sight. Keith said he probably could have used more help dealing with the emotions that came along with blindness. Dealing with the mental side is “as important for anyone with a disability as dealing with the physical stuff,” he said.
Working at Dialogue has been an outlet for talking about his sight, from his newfound relationships with his blind coworkers to his increased comfort discussing his deteriorating vision.
“A bit of a hurdle I had to get over was being able to talk about it with people that I didn’t know,” he said.
Working at Dialogue quickly forced Keith over that hurdle, and today, little remains of the man who struggled to accept his cane.