The majority of adults with a visual disability in the U.S. are also unemployed.
The jobless rate is close to 60 percent, according to the National Federation of the Blind.
Statistics like that, which shed light on the long list of challenges people with vision impairment face, were a driving force behind one father’s attempt to help his young daughter adapt to a devastating diagnosis.
Jake Lacourse of Middleborough, Massachusetts, was honored Thursday at the Consumer Electronics Show in Las Vegas for creating a game he calls BecDot. It’s designed to help his 2-year-old daughter, Rebecca, learn pre-braille concepts.
Rebecca has Usher syndrome, a rare genetic disorder that can cause profound deafness and progressive blindness.
“We knew the world was not going to adapt to her,” Lacourse says. “My entire career has been about solving problems.”
Lacourse is a product engineer by day. By night, he worked at home developing the game for Rebecca. The playing surface, made with a 3-D printer, is about the size of a tablet. Four large braille cells run across its front.
When a toy — like a cow or a pig, each embedded with an electronic tag — is placed onto the tablet, the corresponding braille dots for a cow or pig pop up.
“What we love to see when she plays with it is that all she tries to do is take her finger and mash the dots back down,” Lacourse says. “But that’s her learning.”
The idea is to help young children learn early braille concepts, and get them ready for the long journey of adapting to a world that’s built for people who can see. Lacourse wants to market the toy and sell it for about $100.
It’s not the first time a parent has built something for a child facing blindness.
In the early 1970s, a Stanford University engineer named John Linvill created the Optacon for his blind daughter Candy. The system used a small camera that users could roll across a line of print. The camera was connected to a box with an array of vibrating pins inside, and the pins would rearrange themselves into the shape of the corresponding letters as the camera moved forward.
Candy went on to receive a doctoral degree in psychology.
The Optacon was a high-tech innovation at the time, and was widely used, says Ike Presley of the American Foundation for the Blind.
Presley says Lacourse’s BecDot is commendable and could help other children. He cautions that it probably won’t teach young kids the fine tactile skills they’ll need to learn braille.
But there is still value to the work Lacourse is doing, he says.
“It gives him an opportunity to do something besides just sit around and wait for the doctors or whoever to come up with a miracle cure,” Presley says.
And a cure is needed.
Usher syndrome affects just about 20,000 people in the United States and 400,000 around the world, says Nancy Corderman, co-founder of the Usher Syndrome Society.
“But only about 1 percent has been identified,” says Corderman, whose two children were diagnosed with a type of Usher syndrome that doesn’t develop until later in life. “We have people in our community who weren’t diagnosed until they were 28 years old.”
But Usher syndrome’s symptoms came roaring at the Lacourse family from the start.
Rebecca was profoundly deaf at birth. She wears a pink headband that keeps her cochlear implants in place. There were no immediate signs in infancy that her vision was also going. But her mother, Beth, suspected that something else was wrong with the baby.
When doctors fully diagnosed Rebecca with Usher syndrome a little over a year ago, the family was heartbroken.
“I was just sick for days. I didn’t want to leave the house,” Beth says. “All my hopes and dreams for her came crashing down.”
Worst case, Rebecca will be completely blind by the time she’s a teenager. Her peripheral vision is already closing in, and eventually her sight will likely be reduced to a pinhole.
“Her night vision is going now,” Beth says. “When she’s in a dark area, she says hi constantly just to get the feedback. So we are constantly saying hi back to her so she knows we’re right next to her.”
Rebecca’s parents won’t always be at her side, and that’s what drove her father to create BecDot. The game was honored at the Consumer Electronics Show with something called The Not Impossible Award, which cites BecDot for its “ability to break through barriers.”
“Beth calls this my way of coping. It definitely is,” Jake says. “The thing that really helps me is raising awareness so we can be a small part of finding the cure.”
Jake has to pause to gather himself. His eldest daughter, Reagan, who is 8 years old and does not have Usher syndrome, can see that her dad is about to cry. She darts across the kitchen and wraps her arms around his waist.
“That’s really what we want to do,” he says.