May 30, 2012

Worldwide Vision

Beacon Stories

Brooke James has had more than a glimpse of what it means to be blind in certain parts of the world. And she can assure you, it’s scary.

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“Northern Cameroon is agriculturally based,” says the 28-year-old former Peace Corps member. “And everyone helps the family earn money. So if a child can’t contribute in some way, they’re seen as a waste. In the towns, you see blind people begging. That is the future of a blind person there.”

Photo of Brooke James and Cameroonians

Brooke James (center) abroad

During her 27-month stay in the village of Mokolo, Brooke kick-started various projects, including a women’s center and a pharmaceutical distribution company. “But my baby,” she recalls, “was a school for the blind I co-founded for kids who are visually impaired. For the first time, we were teaching them basic skills and, in a way, rehabilitating them, to make them believe they were worth something.”

Brooke’s never had that problem – despite being diagnosed, at age 12, with Stargardt disease, a juvenile form of macular degeneration, which affects vision in the macula, or central part of the retina. Brooke is the youngest of three female children in the St. Louis-based James family with the disease, and, as she says, “we grew up in a house where, thanks to my parents’ attitude and our resources, anything was possible.” She attended private school and made use of the latest assistive technology, which she still does, as an MBA student at Washington University with a focus on job creation in impoverished countries. “But,” she says, “I could have just as easily been born in a place like Cameroon, and my life would be much different.”

A big support system in her own family’s life has been the Foundation Fighting Blindness. Brooke’s father, Bill, a Foundation trustee, is also a co-founder of the St. Louis chapter, and the entire family, which includes two brothers, involves itself in the annual 5K VisionWalk and Dining in the Dark fundraisers. “Anything having to do with the Foundation, we jump on it,” says Brooke. “I feel like the Foundation saved my family. With these three diagnoses, we needed something to make us feel we’re proactive in helping. And we know that the funds we help raise go toward cutting-edge research. I’m just a big fan of the Foundation.”

After serving in the Peace Corps, Brooke – who’s lost about half her central vision and can no longer see faces while conversing – worked for Helen Keller International, both in Africa and New York City. It would seem she’s done just fine with low vision, but Stargardt, she says, does bring with it “bad days,” and it’s something she would prefer not to pass along to children she might have down the road.

So the research the Foundation supports is vital, she says, to “providing hope” for people like her and her sisters, Molly and Katie, as well as those with retinal diseases that are far more debilitating. That applies, of course, to the visually impaired in Third World countries who, some day, will benefit from the Foundation’s efforts.

Meanwhile, Brooke is thankful for her experiences abroad and the lessons that being visually impaired in a foreign land have taught her – among them the value of listening carefully. “I had to listen and observe and be painfully patient in Carmeroon,” she recalls. “So, for the first six months, I just asked what they needed. Then, when we built something, we built exactly what they wanted, and we built it together.”