By DEVIN DWYER and JACQUELINE YOO, ABC News
(NEW YORK) — Imagine facing COVID-19 and the age of social distancing unable to clearly see or hear.
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.”
Deaf-blind Americans survive by touch: hand-over-hand singing 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 Aristaziabal, 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 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.
“Just seeing the reality of how serious this is and what the risks are,” Samuel added, “it’s something that I want to make my wishes known.”
Many deaf-blind Americans told ABC News that a trip to the hospital during the pandemic is what they fear most.
“There is an assumption in a lot of medical communities that it’s better to be dead than disabled,” said Haben Girma, a leading deaf-blind advocate and the first deaf-blind woman to graduate from Harvard Law School.
“I would be deeply terrified I would not get communication access, that I would not get the care I needed if I were to get the virus and go to the hospital,” Girma said. “There have been several states that have considered putting people with disabilities on the back of the line for treatment.”
Faced with shortages of critical supplies and equipment, like ventilators, some states have drafted guidelines for restricting access to treatments if necessary. In several cases, disability advocates have filed complaints arguing that limits on care for Americans with certain developmental or intellectual disabilities would violate the Americans with Disabilities Act.
Girma and an informal network of deaf-blind advocates are determined not to be forgotten.
“Nobody really thinks about the deaf-blind community. And because it’s not a mainstream, it’s certainly not sexy to have a disability and to deal with deaf-blindness,” said Rebecca Alexander, a private therapist in New York City who has Usher Syndrome, a condition which results in progressive hearing and vision loss. “I think it makes people very uncomfortable generally.”
Alexander wants the world to know that deaf-blind professionals are pitching in during the coronavirus crisis. She’s volunteering her remote counseling services to hospital workers fighting the virus on the front lines.
“A lot of it is helping them manage sort of panic attacks,” she said. “Just knowing that even someone like me, who the community I think at large, if they knew how limited my vision and my hearing was, they might not consider me as someone they would reach out for help — it does feel good to be able to provide that.”
Many deaf-blind Americans are finding ways to help their communities and each other during this time.
Benton, who coordinates services for the deaf-blind in North Carolina, says she has worked with police in rural parts of the state to check on deaf-blind residents who don’t have technology to communicate.
“We were able to work with the officers who have the appropriate PPE to go in and check on this deaf-blind consumer to make sure that they were safe,” Benton said. “It’s so important because we’re all going through this together and it’s impacting all of us.”
Near Seattle, deaf-blind sisters Nancy and Debbie Sommer say they feel more isolated than ever but are sticking together through it all.
“We thank goodness we have computers and smartphones so we can talk to each other with friends,” said Nancy Sommer.
“I’m just keeping my fingers crossed that everything will be ready to open again,” added Debbie Sommer, “and hoping that the COVID-19 decreases.”
Until then, the fight against coronavirus is — for the deaf-blind — also a fight to stay connected.
“Often the unique needs of communities like those who are blind, deaf-blind, and visually impaired fall from public view,” said Cancelosi.
“We created virtual learning services that include teaching children who are blind or visually impaired braille, virtual independent living skills for adults and continued leading of support groups,” he said.
Girma is encouraging everyone in her community to raise their voices, in their own way.
“The best remedy for that sense of isolation and loneliness is defined purpose,” she said. “Figure out what you can do to give back and help your community.”
And in the meantime, said Wismer, the Gallaudet student, don’t stop dreaming.
“What I would like to do after this is all over with — let’s take a vacation,” he said.
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