Steven Wilson is preparing for the inevitable.
Wilson, who was born with severe hearing loss, is also losing his vision. Both have continued to worsen over the years.
Wilson, 48, who spent most of his life working on boats on the Colorado River, moved to Tucson from Northern Arizona a little over a year ago to receive services through the Southern Arizona Association for the Visually Impaired.
Through the organization, he’s improved his orientation and mobility skills, and learned grade 1 and 2 Braille and explored different career options. He’s studying to become a rehabilitative counselor. Technology he’s recently received through a program launched by the Federal Communications Commission has eased his fears of how he’ll communicate when he loses his vision completely.
Six years ago when Wilson went to the eye doctor after noticing decreased night vision and increased sensitivity to light, he was excited to get a new prescription and be able to see again.
He wasn’t prepared for the diagnosis from the doctor.
Wilson has retinitis pigmentosa, a degenerative eye disease that causes deterioration of the rods in they eyes, which affects peripheral vision, central vision and night vision.
“I could see in his expression he didn’t like being the bearer of bad news like that, but he had to do it,” said Wilson.
His vision has continued to worsen.
“I now have a view of 3 millimeters which is kinda like looking through a straw,” Wilson said. “I have to do a lot of scanning to get the big picture.”
Based on research he’s done, Wilson estimates he could lose total sight in about seven years.
“I want to go against the statistics. See I’m that one percent that’s gonna keep that little bit forever, for the rest of my life,” he said.
Wilson was born with severe hearing loss and has used hearing aids since he was a child. His hearing loss has been categorized as profound; the next step is total deafness, Wilson said.
Over the summer, Wilson received a BraillePen, a wireless Braille keyboard and an iPad, through the National Deaf-Blind Equipment Distribution Program, also known as iCanConnect. The program provides communications technology and training to people who qualify and is funded by phone bill fees.
“The main thing it did for me right off the bat was relieve my fears of how am I gonna communicate when I go blind because I was so visually reliant, especially for lip reading — it’s how I get by with my hearing loss,” Wilson said.
Wilson sometimes uses the equipment in classes he’s taking at Pima Community College. A translation specialist accompanies Wilson to class and uses a stenotype machine to take down the lectures and conversations among classmates. The dictation appears on Wilson’s iPad or laptop.
Because Wilson is very sensitive to light, reading books printed on white paper hurts his eyes. The iPad has made reading easier because Wilson can control the brightness and change the screen to black and make the text white.
The iPad has also made it more convenient to read bedtime stories to his 5-year-old daughter, Daevi, whom he’s raising alone.
“I can’t read in the dark,” Wilson said. “So I do the e-reader and let it read it to her, and I’ll lay down with her and just hold her.”
Wilson doesn’t have the need to use the technology as his primary form of communication, but when that time comes, he can hand the iPad to a person who can type what they want to say and the words will pop up in Braille on the wireless keyboard .
In Southern Arizona, the iCanConnect program has been administered by the Community Outreach Program of the Deaf since July 2012.
About 70 people statewide have received iCanConnect technology and another 13 are going through the eligibility process or are waiting to be assessed to determine what equipment would best serve them, according to Donna Martin a program coordinator at COPD.
The program provides Braille devices, computers, phones, software, mobile devices and signalers to individuals who are deaf-blind and low-income.
The cost of the equipment can vary from a few hundred dollars to a few thousand.
Having access to this type of technology is important for many reasons, Martin said.
“Persons who are deaf-blind have access to the same services as others and can begin living more independent lives, be in control of scheduling their doctor appointments, meeting people and in general management of their lives,” Martin said via email.