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The American Sign Language word for COVID-19 mimics the shape of the virus that has penetrated global consciousness over the last few weeks. The sign, an open hand over a fist, is reminiscent of the circular shell and protruding spikes, or coronas, the virus is known for.
Jan Withers, of the state’s Division of Services for the Deaf and the Hard of Hearing, doesn’t know who invented the sign. But she and others at the North Carolina Department of Health and Human Services want deaf people across the state to know what it means. And she wants them to know what they need to do to keep their families safe during the outbreak.
Getting information to the deaf and people with hearing loss isn’t easy, especially in a pandemic when information is constantly changing. In a state where just under 15 percent of people reported they had hearing loss, according to CDC 2014-16 data, reaching out to that population is important. That number includes three distinct groups: deaf people, those with some hearing loss, which typically happens later in life, and people who have hearing and vision loss.
Each group has distinct communication needs.
Some people with hearing loss rely on lip-reading, and with the proliferation of masks, their ability to understand and follow conversations may be affected. People who are deaf from birth may have a more limited vocabulary.
But all groups need to know and understand health information surrounding the outbreak. In a crisis where information on handwashing and social distancing is the main line of defense, that outreach takes on a new urgency.
People who can hear, Withers said, can get incidental knowledge from the television, radio, or conversation snippets. Not so for those with hearing loss.
“The challenge in the deaf community is with their access to information,” she said in a Zoom interview through an American Sign Language interpreter. “It might be limited. It’s already bad enough with trying to make sure that everybody gets all the right information because there’s so much misinformation put out there.”
Using screens to reach out
North Carolina officials have taken several steps, from having a sign language interpreter at every briefing to working with television stations to include captions with each update. But Withers said, captions aren’t always accurate, and their quality can sometimes vary.
People with hearing loss are left out from the conversation in other ways, Howard A. Rosenblum, CEO of the National Association of the Deaf, said in an email.
The Federal Communications Commission mandates television captioning, but the rules are different for live broadcasts, he added. National news must be captioned, he said, but most local news isn’t. And while the FCC requires live captioning in emergencies and disasters, that requirement is not always followed.
Internet live streams aren’t much better, he added. When televised news is posted online, federal law dictates that captioning be included. But the captions aren’t always accurate because many stations generate their captions with a computer program, rather than a trained expert, often without editing to ensure accuracy. Rosenblum wrote that often makes captioning “useless for the most part.”
And even when press conferences include a sign language interpreter, television stations may not include the interpreter in the frame during the broadcast, Rosenblum added.
All but three governors have included sign language interpreters in their coronavirus press conferences, according to Rosenblum, who said the organization is working to bring similar measures to all 50 states.
The White House, however, has not included an interpreter in its coronavirus briefings, he added, even though advocates have requested it. Representatives from the federal Department of Health and Human Services referred questions on the topic to the White House. Representatives from the White House were not immediately available for comment Tuesday evening.
Deaf-lead organizations across the country have stepped in to fill in the void, producing and distributing information for people with hearing loss, Rosenblum wrote.
In North Carolina, the N.C. Department of Health and Human Services has also joined that effort, distributing videos specifically for people with hearing loss with information terms such as coronavirus, shelter in place, and social distancing. The videos also tackle concerns unique to people with hearing loss, such as preparing a communication plan for a hospital visit, a topic that Withers said can be fraught even without a widespread outbreak.
Communicate ‘to the extent possible’
Some infection-control strategies hospitals employ can get in the way of communicating with deaf and hard of hearing people, Withers said. Masks can impede the ability to read lips, for example. Patients with hearing and sight loss may need an interpreter to be very close to them, and those who are deaf and blind may need someone to sign directly on their hands.
With mounting pressure from increasing caseloads clinicians may find it hard to accommodate patients with special communication needs. Withers said the DHHS is working with hospital providers across the state to remind them of the best ways to communicate with the deaf and hard of hearing.
The department also shared a National Association of the Deaf video to help people prepare for a hospital visit. The video directs people to bring communication supplies such as pen and paper, a whiteboard or a smartphone to the hospital, as well as medical placards describing their disability and explaining how they can communicate with providers.
But Rosenblum, the organization’s CEO, said hospitals must do their part too.
“We urge hospitals to maintain full communication access with deaf and hard of hearing patients and companions to the extent possible,” he said.