For tens of thousands of deaf-blind Americans, who have severe hearing and sight impairment, the scope of the outbreak and its new normal have posed unique challenges to daily life.
“Our way of communicating and our culture, everything relies on touch,” said Ashley Benton, deaf-blind services coordinator for the state of North Carolina. “Now we’re not allowed to touch, and we have to practice social distancing.”
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Deaf-blind Americans survive by touch: hand-over-hand signing to communicate; fingers scanning braille public signs for mobility; hugs and handshakes to feel connected. While not everyone experiences complete darkness and total silence, advocates say touch is critical — and now comes with significant risk of contagion.
“This is a big problem,” said Jorge Aristizabal, a deaf-blind man living in Seattle. “The requirement to stay 6 feet away from other people is actually not safe for me. As a blind person, I need to touch my guide.”
Some guides, known as support service providers, are fearful of being touched and touching back. It can mean fewer trips outdoors, inability to take public transportation and sharply limited access to necessities, like groceries and house supplies.
“We have many, many volunteers when things are fine. But now, the challenge is for somebody to take their own self into a position of maybe getting the virus,” said Tony Cancelosi, president and CEO of Columbia Lighthouse for the Blind, an advocacy and support services nonprofit in Washington, D.C.
The dynamic has also complicated efforts to counter isolation and loneliness within a community often prone to feeling cut off, Cancelosi said.
An estimated 40,000 American adults are deaf-blind, according to a 2008 study by the National Consortium on Deaf-Blindness.
“I have not gone off campus since March 18. I only come out of my dorm to get food, get the mail, and that’s about it,” said Philip Wismer, a first-year student at Gallaudet University in Washington, D.C.
“Sometimes I do feel lonely. My other friends that are completely blind are feeling very, very isolated,” said Wismer, who is is completely deaf and has very low vision. “It’s very difficult for everyone, but especially for deaf-blind people across the country.”
Tyler Samuel, 28, of Nashville, who was born with a genetic condition that degraded her hearing and sight, says she fights off a sense of loneliness every day.
“In my youth, I just really worried that I wouldn’t find that independence. And when you do find it, you don’t want to lose it,” Samuel said. “And so for it to be kind of chipped away is — it kinda lowers your self-esteem.”
Samuel, who lives with her partner, still walks to work every day as a pediatric surgery coordinator at Vanderbilt University Hospital. She’s a freelance opera singer with dreams of going big, but the pandemic has prompted some soul searching.
“I lost a friend two weeks ago to COVID and she was very young — early 30s — and it kind of prompted me to go ahead and get my advance (medical) directive and my will together,” she said.