Technology has allowed Lori Siedman to reconnect with friends and family. Photo Credit: Anna Miller.
By Alix Hackett
In many ways, Burgon Jensen is a typical college student. She attends class at the University of Utah and enjoys rock climbing, horseback riding and playing guitar in her spare time. She uses her iPhone to text her friends, and, of course, her mom.
But for Jensen, who is entering her senior year, being able to keep in touch with classmates, professors and family members isn’t something she takes for granted. As someone who is both deaf and blind, she relies on specialized technology to help her stay connected.
Thanks to the National Deaf-Blind Equipment Distribution Program, known as iCanConnect, Jensen has the tools she needs. In addition to her iPhone, which has built-in accessibility features, Jensen uses a MacBook Pro laptop and a Focus 14 refreshable braille display, which converts text on her computer or phone to braille. All three devices have been an integral part of her university experience.
“There’s no way I could be successful in college the way I am now without this equipment,” she said.
Technology plays a large role in the lives of many people with deafblindness, but it comes with a price. For many individuals, a refreshable braille display that costs $2,000 simply isn’t affordable.
That’s what makes iCanConnect so important. The program, run by the Federal Communications Commission (FCC), provides up to $10 million annually for free communications equipment for individuals who have significant combined vision and hearing loss and meet federal income guidelines. The equipment ranges from accessible mobile phones to text-to-speech software, and is matched to each client’s individual needs.
Since it was first established as a pilot program in 2012, iCanConnect has helped thousands of individuals like Jensen communicate freely and independently.
“This program has vastly impacted people’s lives,” said Marcia Brooks, Perkins School for the Blind’s national project manager for iCanConnect. “There are people who have been reconnected with family members after decades, people who have enjoyed more job opportunities and parents who say that their child has flourished and is now is able to go to college.”
Brooks and others were elated when the FCC announced its decision to make iCanConnect a permanent program, beginning in July 2016. In the announcement, delivered at the FCC’s open commission meeting in May, FCC Chairman Tom Wheeler spoke of the program’s power to “tear down barriers” for individuals who are deafblind.
“No (U.S. resident) should be denied access to this life-altering technology because they can’t afford it,” he said. “iCanConnect reminds us of this agency’s power to make a difference.”
Perkins has worked closely with the FCC on the program since its inception, directing national multimedia and digital marketing campaigns to encourage people who are deafblind to apply for assistance. Perkins also leads the program’s on-the-ground operations in 19 states, connecting those who qualify with technology and training.
“I think it’s fair to say we’ve played a leadership role in the program,” said Brooks. “We have a unique perspective in being able to see how a lot of different regions operate – we understand the differences between running a program in an urban metropolis versus a mountainous rural environment.”
Jeff Hess spent more than 20 years isolated from friends and family members after losing his vision and a significant amount of his hearing due to cryptococcal meningitis, a disease that affects the brain. Living in secluded Spencer, Indiana, meant he had few opportunities to communicate with other people face-to-face.
That changed when Hess’s ex-wife Kathy learned about iCanConnect. After qualifying for the program, Hess received a new desktop computer with both traditional and braille keyboards. Previously unfamiliar with technology, Hess learned to use his new devices with help from a trainer. He sent his first email to Kathy in May.
“It was exciting to be able to actually communicate with her on a private basis,” he said, without having to ask other people to write his emails.
Hess’s sister, Julie Gaskins, said she watched Hess giggle with excitement after sending his first email. He now corresponds with his sister who lives several states away and, for the first time in 25 years, he has been in contact with his brother, aunt and uncle.
“We never could have imagined this happening five years ago,” Gaskins said.
Trainer Lisa Chiango has worked with many people like Hess, who are slowly familiarizing themselves with the world of technology. During initial assessments, she sits down with new clients to discuss their background and gauge their comfort level with email, texting and other forms of communication.
“Everybody is going to be different,” said Chiango, who’s been an iCanConnect trainer for two years. “Some people may have been connected at one time and they lost the connection because of their deafblindness. Other people have never been connected before and now they’re trying to catch up.”
Chiango recommends specific communication devices for each of her clients based on their needs and abilities. For some, that might mean a laptop with screen-reading software; for others, a smartphone or tablet. Once the device arrives, Chiango helps her clients set up their new technology and learn to use all its features. The learning curve is often steep, but never insurmountable, she said.
“I’m working with one consumer who started out with no skills at all and is now using an iPad every day to connect with Facebook, email and text messaging,” she said. “That is so rewarding, to see that happen – it makes a huge difference in their life.”
Massachusetts resident Lori Siedman can remember a time when she had great difficulty communicating with her family. She was born deaf and became legally blind at the age of 11 as a result of Usher syndrome.
“I would sit in a room with my family and not be able to communicate with them,” she said. “I’d have no idea what was going on.”
Things are different now. Through iCanConnect, Siedman received a laptop with ZoomText – software that magnifies text – and a large monitor to read and respond to emails. She texts back and forth with friends and family using an iPhone. Most importantly, she no longer feels alone.
“It changed my life,” she said.