At the ninth annual Deafblind Awareness Day, everyone had a story to tell.
A mother described the uncertainty of raising an infant with CHARGE syndrome. A teenager who is deafblind shared his dream of working in the community. A woman explained how she provides life-changing technology to people like herself who are deafblind.
Each story was unique, but all three emphasized the importance of state-funded services and programs for people who are deafblind and their families.
"That’s why we’re here today," said Kerry Thompson, Information and Program Coordinator for the Disability Rights Fund. "We need to advocate to make sure everyone has these opportunities."
Students in the Deafblind Program at Perkins School for the Blind joined several dozen members of the deafblind community and their interpreters for the event, held March 30 at the Massachusetts State House. They were joined by several state representatives and service providers from organizations like the Deafblind Community Access Network (DBCAN).
They listened as parent Shelly Fichera described how enrolling her daughter in the Infant-Toddler Program at Perkins helped set her on a path of growth and development.
"She's now almost 10 and about to start the residential program," said Fichera. “With Perkins she's been able to have the benefit of speech, total communication strategies in the classroom, behavioral support, all types of adapted physical education and orientation and mobility. I could go on and on.”
Antonio, a 20-year-old student in Perkins' Deafblind Program, stepped to the podium to introduce himself to the crowd. Using a combination of speech and sign language, he described his future aspirations.
"I will be graduating from school in 2019," he said. "When I turn 22, my goal is to live in an apartment and work in the community."
Lisa Chiango described her role as an adaptive technology trainer for Perkins Solutions, where she helps other deafblind adults gain access to communications technology on behalf of the National Deaf-Blind Equipment Distribution Program (iCanConnect). That equipment helps people with vision and hearing loss stay in touch with family and friends.
iCanConnect's services, as well as those provided by organizations like DBCAN, provide a lifeline for individuals who otherwise might remain cut off from society, she said.
"This program is so unique and it fills a big gap," she said of DBCAN. "We need to ensure that legislators know this – we are transformed because of its existence."
Several legislators spoke at the event, including Representative John Scibak of South Hadley, who read a proclamation issued by Massachusetts Gov. Charlie Baker naming June 26 – July 2, 2017 Deafblind Awareness Week.
Representative Denise Provost of Somerville commended those in attendance for their advocacy and urged them to visit with their elected representatives face-to-face.
"What you have is special," she said. "You have an experience of the world and of life which looks different. Take this experience and tell it to the senators and representatives. Tell them your challenges, your accomplishments and your potential, and you will change the world."