New York Magazine has a long feature in its Feb. 9 issue about Rebecca Alexander, who has Usher syndrome, which causes deafness and blindness.When Rebecca Alexander (pictured) walks into the party at a Hell’s Kitchen condo, it’s like someone turned on a 10,000-watt lightbulb. The room migrates toward her, absorbing her aura, a raw, happy energy. She had sold the party to me as “a regular event where young blind people meet somewhere that’s well lit.” It looks like any other party: loud music, appetizers, a dozen twenty- and thirtysomethings mingling in a room devoid of furniture to trip over. Most everyone in the room has retinitis pigmentosa, the progressive death of photoreceptor cells, which can lead to blindness.
Alexander, a pretty 29-year-old brunette who is also losing her hearing, grins hello. The Kanye West song that’s playing sounds to her like an auditory blur, and she views everything through two small holes called “doughnut vision,” which is like if you squeeze your hands into little circles in front of your eyes. A typical person can see 180 degrees without turning their head; Alexander can see less than 15 degrees. Her pupils dart back and forth, to figure out who’s there, scanning to compensate for her brain’s unfortunate habit of wrongly filling in blank spots, putting empty space where there’s a person. Her condition is known as Usher syndrome type III, a recessive genetic mutation causing her retinal cells and ear-hair cells to die, an ailment shared by fewer than a thousand Americans. A typical sufferer is blind and completely deaf by his forties.
Within moments of entering the party, she’s in a clique, seamlessly shifting so that the voices come toward her good left ear and her back is against a wall, cutting down her scanning area. Her hearing aids are hidden by silky, dark hair. She’s in hyper mode, which is how she gets when she can’t see or hear much. To conceal this, she talks up a one-way storm, in a superloud voice, blue-green eyes flashing happily at you. She’s now telling her friend Lis Perry, a sales manager with retinitis pigmentosa, about how she balances her psychotherapy practice (she specializes in eating disorders) with the fifteen weekly spinning classes she teaches.
Others join the circle around her, and the conversation turns to Governor David Paterson. The consensus is that perhaps the public will begin to understand that most legally blind and deaf people don’t live in a cloak of total darkness or silence. But Alexander is not listening. She spots crackers and cheese mushed into the carpet. “Uh-oh! No one step over there.” She rushes off to find paper towels, like a guest at any other party.
