Meirav Malter’s life is, like that of most teens, a journey of constant transitions; learning, coping, communicating, adjusting, and jumping into daily adventures without quite knowing how they’ll end.
At 18, the Wilmette resident and recent New Trier High School graduate is a veteran of dealing with transitions, and possibly an expert of mastering them.
Later this summer Malter, the daughter of parents Alan Malter and Gili Sherman, heads to the University of Illinois’ Urbana campus. She plans to study global issues and international relations, an interest born from her family’s well-traveled history and from participating in the Model United Nations as a high school student.
Asked last month if she’s worried about heading off to college hundreds of miles from her family, living away from home for the first time, she smiled and said, “Living on my own isn’t so daunting. After all everyone’s going to be figuring it out together.”
However, Malter’s life goes well beyond figurative transitions. Nearly everything she does requires constant communication with others and constant navigation through daily adventures that are not only unknown, but largely unseen.
That’s because she lives with the rare visual impairment called achromatopsia, a combination of extreme sensitivity to light, color blindness and low visual acuity that affects only one in roughly 33,000 people in the U.S.
Her academic achievements and depth of community service while dealing with achromatopsia led to her being one of 23 students nationwide to win a $10,000 scholarship from The Lighthouse Guild, a New York-based vision care and education nonprofit.
Her older sister Ma’ayan, who has a slightly less severe level of achromatopsia, won the same scholarship two years ago.
Living with achromatopsia could be described as living in a world that people without the disorder see only at night or in light-free rooms. Colors leach from objects, leaving black, white, and shades of gray, and nothing can be viewed in sharp detail.
Even more difficult, Malter and other “achromats” deal with light sensitivity so severe that what might seem like regular daylight or normal indoor illumination to most of us is often a painful and featureless white glare to them.
Malter isn’t blind as such, although her impairment renders her “legally blind.”
With the help of glasses and special contact lenses, she can see without squinting to keep out daytime glare. Bringing books very close to her face allows her to read them slowly. If she sits very close to a television, she can see what’s on — That’s how she became a Gossip Girl and Gilmore Girls fan. She can use magnifying aids to figure out things like street signs, although she prefers not to.
She can’t drive, although the training she’s gotten, honing her ability to work with as many visual cues as possible, means she’s often the best navigator in the car, she said. If she knows the layout of her surroundings, she maneuvers so easily that most observers wouldn’t know she had a visual impairment.
She has danced since she was in second grade. Before she left New Trier, Malter was an active member of several school and area dance groups, choreographing pieces for her troupes.
“It was really about the artist and creative side of dance,” she explained. “I loved choreographing, and I liked the fact that I could do that even if I wasn’t the most flexible dancer.”
She rock climbs, and tries to run up to a mile every day, although she’s not always successful. She’s hiked, although an effort during her most recent trip to Israel was harder than she expected it to be. She finished the hike successfully because she had a friend with her to whom she’d explained her situation, and who held her hand through the trek.
Malter has the benefit of a supportive family; her sister’s school experience – which at times included educators unsure of how to deal with achromatopsia, Alan Malter said – helped pave the way for her. She also has a cadre of friends developed since the family moved from Arizona to Wilmette while Malter was in junior high.
But her life is still a balance between looking and acting as if she has no impairment, and coming up against that impairment. As her father says, “routines aren’t routines. If she knows her environment, you wouldn’t know she had any problem. If she doesn’t, it’s like starting out from scratch.”
“The biggest compliment I can get is when my closest friends say, ‘Oh, I completely forget that you’re visually impaired.’ But it can be a drawback, because there are times when I need help, and they’ve forgotten that I need it,” Malter said.
Malter must often explain what she can and can’t do to the people she meets, as she did with her hiking acquaintance. The way she describes how she does it reflects who she is as much as it illustrates anything.
“It’s frustrating to have to explain, but I’m always open to questions,” she said. “What I usually tell people about first is my difficulty with light because I think that’s important to know. I don’t talk about the color-blindness first. I actually usually hold off on telling people when I meet them. I talk about what I like to do first, rather than the vision. And then I try to play it by ear.
“But I like that my disability isn’t me.”Tags: Meirav Malter