Have you ever felt isolated in a room full of people?
For individuals who are Deafblind, that feeling of isolation can occur every day, according to Christine Dwyer, sign language interpreter at Perkins School for the Blind. Dwyer visited FSU on Oct. 15 to train students of the American Sign Language program to be Support Service Providers (SSPs).
Dwyer was accompanied by two Deafblind spokespeople from Perkins, Jaimi Lard and Tracey Reynolds, who presented with Dwyer and provided their real-life experiences to help students understand the important role an SSP plays in their lives.
SSPs assist Deafblind people in their day-to-day lives. They are typically volunteers and play a different role than an interpreter. Dwyer explained the role as helping Deafblind people “do what they want” and “have experiences.”
SSPs focus on filling in the context for the individual while an interpreter relays messages to an individual who cannot hear or see. To help the Deafblind person maneuver the world around them, an SSP will tell them about the layout of a room, the other people who are present or the visual cues that they may be missing.
Dwyer said, “If there is a baby in the waiting room of the doctor’s office, I will let Tracey know so that if it starts screaming, which may startle Tracey, she can be prepared and she knows what it is.”
Although one may be hearing impaired, they still may be able to hear some high-pitched sounds and be alarmed by jarring noises.
Although Lard and Reynolds are both Deafblind, they use different methods of communication. Lard uses tactile sign language to communicate with others, which means ASL users sign slowly and deliberatly to Lard, while she follows their hand movements with hers to receive the message.
“It’s very important to have that mutual respect with that Deafblind person. Slowing down how you sign, being clear and giving good, deep explanations is very helpful,” said Lard.
Reynolds on the other hand, does not use any sign language. Reynolds uses an audio-enhancement device that consists of a microphone and hearing aid.
“I’m Deafblind and I am hard of hearing and I can speak for myself. I can hear what the other person is saying if they speak into my microphone. Or if I don’t have my microphone, I can just use my hearing aids and they just have to speak up and come close to me,” said Reynolds.
According to Sense.org, an international charity for Deafblind people, Deafblindness is a combination of sight and hearing loss that affects a person’s ability to communicate, to access all kinds of information and to get around.
Dwyer said, “With Deafblindness, you’re impacted by the dual-sensory loss. Both of those senses being lost impacts you very differently than just being blind or just being deaf.”
During the presentation, Reynolds and Lard shared their personal stories about how they came to be Deafblind.
Lard told the students that while her mother was pregnant with her, she contracted Rubella. Today, there is a vaccination for Rubella. However, in the 1960s when Lard was born, Rubella was a problem across the country, she said.
Reynolds is a twin and was born prematurely. She said, “I was born in November of 1966 instead of January of 1967. So the doctor put me in an incubator that helped me grow, but they gave me too much oxygen – that’s what made me Deafblind.”
Another cause of Deafblindness is Usher’s Syndrome, which is a progressive disease that leads to Deafblindness and can be very emotional, said Dwyer.
Freshman Emily Pacheco said her mother’s best friend had Usher’s and had to move in with her family.
“My mom is kind of her volunteer SSP. We have to sign really close to her face and lights are a problem,” said Pacheco.
Another student, senior Kristin Morrissey, also had personal experience working with someone with Usher’s.
“My internship was with someone with Usher’s. We would have to sign within a small box or else we might leave their frame of vision,” she said.
Following the informational session, students were given simulation goggles that allowed them to experience different intensities and experiences of blindness. The students were told to get up and use ASL to introduce themselves to others without speaking or removing their goggles.
For some freshman students, part of the challenge was the limited amount of ASL they had mastered
by the time of the training session.
Freshman Julia Cohen said, “Because I’m a beginner in ASL, I can’t communicate very well. So, if someone was signing to me and I didn’t understand them, I told them, ‘I don’t understand.’”
She added, “I was straining my eyes to try to see, so immediately my head started to hurt.”
Luce Aubrey, ASL professor, said students didn’t need to worry about their ASL skill level for two reasons as an SSP. “You have people like Tracey who don’t use ASL. And then, like Jaimi said, if you are using ASL you need to go slowly.
“You will always be matched with someone whose level is comfortable for you,” said Aubrey.
Morrissey had 10-degree tunnel vision simulation googles, which had only a “small hole” to see through in each eye, she said.
“Once we shifted, I felt lost in the room because I had to readjust my reference points,” said Morrissey.
Freshman Kelsey Carvalho said the goggles she had made her entire frame of vision extremely blurry. Because of this, whenever she greeted someone, she tried to let them know her vision was blurred.
“So, the first thing that I said to everyone, I signed, ‘blurry,’ and then, I taught almost everyone in the room how to sign ‘blurry.’”
Carvalho was one of three students in attendance who identified themselves as “CoDAs” or children of deaf adults.
Pacheco is also a CoDA. “For me, ASL was my first language,” she said. She added, the ASL program at Framingham State has been “very accommodating,” considering her background with the language.
“I don’t think there are enough interpreters that are willing to work with Deafblind people. If the door was open, I would go through,” Pacheco added.
Mark Foley, another CoDA and sophomore ASL interpreting student, said his mother, who is Deaf, was encouraged to speak growing up. Now that he’s learning sign language, she’s starting to use it more.
“I feel like now I’m learning about something that’s always been there,” he said.
Foley added, “This opportunity is great. … It makes you realize that the need is there and it’s great to see people like Christine who are so passionate about what they do.”