Tracey Mitton still remembers the confusion and uncertainty that accompanied the birth of her daughter, Ashley, 23 years ago. Ashley was born with CHARGE syndrome, a rare genetic disorder that causes congenital defects, health complications and varying degrees of deafblindness.
“It was very overwhelming,” Mitton recalled. “Taking care of her physical needs, not knowing if she could see, hospital stays...this is the reality when our children are born with different needs than we are equipped to handle on our own.”
Today, Ashley is a successful, happy adult. She’s a graduate of Perkins School for the Blind and has a part-time job that she enjoys.
On Thursday, Mitton and Ashley gathered with other members of the deafblind community at the Massachusetts State House for Deafblind Awareness Day. Held every year for the past decade, the event is a chance for members of the deafblind community to share their stories and how state-funded services have empowered them to achieve their goals.
For Ashley, attending Perkins School for the Blind gave her the tools and experience she needed to successfully transition to adult life, said Mitton. She also received support from the Massachusetts Commission for the Blind.
“Agencies and schools play such an important role in the lives of our families,” Mitton said. “They have the knowledge and skills to help us help our children.”
Joyce Richardson was born with a hearing impairment and began losing her vision later in life as a result of glaucoma. On Thursday, she described how technology provided through the National Deaf-Blind Equipment Distribution Program (commonly called iCanConnect) has helped her regain her independence and communicate with others.
“Being deafblind doesn’t mean you are helpless or useless,” she said. “You can do just as much as people who can see and hear well.”
Several state legislators dropped by the event to show support, including Representative Jay Kaufman of Lexington who was awarded a plaque for his “commitment and dedication to education, rehabilitation and independence for all residents of the community who are deafblind.”
In his remarks, Kaufman commended attendees for their advocacy.
“What you’re doing here today is noble work and absolutely critical work,” he said. “We are hearing from constituents on a myriad of causes, and your presence here today allows us to put a name and a voice to yours.”
In addition to Deafblind Awareness Day, Massachusetts Governor Charlie Baker has issued a proclamation declaring the week of June 24-30, 2018 “Deafblind Awareness Week,” during which time citizens are encouraged to “publicize the abilities and potential of people with deafblindness.”
Tracey Mitton with her daughter, Ashley, a Perkins School for the Blind graduate, at Deafblind Awareness Day.