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COVID-19 Takes Touch Away From the Deaf-Blind

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Source:  Nashville Scene  https://www.nashvillescene.com/news/features/article/21136603/covid19-takes-touch-away-from-the-deafblind
June 11, 2020

A local Nashville newspaper in Nashville, the Nashville Scene, interviewed and highlighted two DeafBlind individuals (Ashley Jackson and John Forbes) and one interpreter (Forest Sponseller) for this article.

 

When COVID-19 hit, Forest Sponseller began thinking about what his mom, who is Deaf-Blind, is experiencing.

“The world for her exists in only three senses, and that’s taste, touch and smell,” he says. “That’s all there is for her. And those are the three senses that will transmit a virus.”

People who are Deaf-Blind rely heavily on touch and close proximity with others to communicate and complete daily tasks. Social distancing protocols designed to slow the spread of COVID-19 stand in the way of that.

Ashley Jackson uses tactile American Sign Language, in which she puts her hand on top of the hand of the person who is signing. She also uses what’s known as protactile sign language to get more context. Someone might draw the shape of a room on her back or her hand with their finger, and note where the exits and other people are, along with other points of interest. There are also protactile signs to note expressions on others’ faces, and to alert a Deaf-Blind person in case of an emergency.

Jackson, who is completely blind and has some hearing through cochlear implants, says hearing and sighted people take things like eye contact or a nod for granted. A handshake or a touch on the arm is what makes her feel acknowledged.

“I miss being able to touch a lot,” Jackson says. “We were isolated before, and when you add social distancing to it, it makes us feel a lot more isolated. We don’t enjoy going out right now because we can’t touch anybody and we can’t get close enough to communicate with anybody because we rely on touch for our communication. So many people take for granted — all they have to do is look at one another and know what the other is saying.”

On a typical day, it can be hard for others to understand Jackson’s speech. She says it’s frustrating when it’s further muffled by a mask, but she’ll wear one anyway. Jackson says she’s especially worried about people who are Deaf-Blind and also have special needs. She’s able to understand the virus and why she can’t touch, but she knows people who aren’t able to.

Many people who are Deaf-Blind have some level of sight or hearing. (For our interview, Jackson had her phone audio connected directly to her cochlear implants.) If a person has some eyesight, they can use zone interpreting, in which an interpreter stands close to them, or tracking, in which the Deaf-Blind person holds the elbow of the person to help their eyes track the signs. A challenge with tactile sign language compared to regular ASL is that a person can’t point to things or use facial expressions. Touch is used to communicate all these things, and sometimes that involves touching the face. Sponseller, a certified interpreter for the deaf, wears a mask and uses lots of hand sanitizer when he communicates that way.

“People might give you strange looks because you’re not supposed to be close together,” Sponseller says. “But there’s no way around it. The Deaf-Blind community at large is struggling with that.”

Jackson was working on her master’s degree in social work at Gallaudet University in Washington, D.C., when the pandemic hit. At first, she would meet with an interpreter individually, who would interpret video-conference meetings for her. But as the pandemic progressed, she was on her own.

“Learning online just doesn’t work for me — [it’s] not for people who do better with one-on-one instruction,” Jackson says. “We don’t realize how much we rely on people until now. I’ve noticed that I’ve become more depressed, I’ve become more lonely and emotional, craving contact. It’s just scary not to have contact anymore.”

It’s hard to be left at the mercy of others — and for the Deaf-Blind, most of the time those others are volunteers. They need interpreters for certain things, like medical and legal appointments, but they also need Support Service Providers. SSPs help with day-to-day tasks.

John Forbes, former president and current treasurer of the Tennessee Organization for the Deaf-Blind, says finding an SSP can be difficult, even before stay-at-home orders started keeping some volunteers at home. The day he spoke with the Scene, Forbes — who is Deaf-Blind himself — was planning his first trip to Walmart since February. He created a list that includes aisle numbers and a description of each item to help out his SSP. He could always bring along his video magnifying glass, but this way will save time. The person who is taking him is volunteering her time, after all.

An SSP is also required for each attendee to Forbes’ favorite TODB event of the year: sailing on Old Hickory Lake. He is sure to send out the dates in his newsletter months ahead of time so that people have time to secure SSPs. The group had to cancel one of the twice-a-year state TODB meetings for the first time due to COVID-19.

When COVID-19 is under control and Forbes can come and go from his senior living center as he pleases, he’s going to keep working to establish a statewide SSP program that collaborates with local interpreting services to make sure the Deaf-Blind have the support they need. He’ll write another grant to have a summer camp for the Deaf-Blind, in hopes of getting the funding again for the first time since 2012.

He’s anxious to get his sign language teacher back in the building, and is staying brushed up on his newly learned Braille skills by reading the Bible. He’ll also keep advocating for a state-provided curriculum for people who are late Deaf-Blind, like him. He wasn’t diagnosed with Usher syndrome type II until he was 27, even though his hearing was always bad and his sight started to decline in adolescence.

“It takes a lot of time to go advocate,” Forbes says. “You’re going to hit dead ends, but you have to go back and try and try and try until you find a door that’s wide open.”

Having to wait for others to understand them is an everyday reality for people who are Deaf-Blind. Jackson hopes sighted and hearing people take the time and patience to listen, especially now.

“I’m talking quite a bit, but I feel like I have to say everything because I hope this will give people insight, and they’ll take the time to listen because they don’t have to go out to work and be as busy,” Jackson says. “They have more time to listen, and I want them to take the time to listen to what I have to say and think about what I have to say.”

For more information on ASL and SSP classes in Nashville, visit bridgesfordeafandhh.org