The Forgotten Victims of the Pandemic: The Deaf Community
WHY YOU SHOULD CARE
The deaf and hard of hearing deserve the same access to information about the pandemic as everyone else.
Like most people around the world, the coronavirus pandemic has changed Nanette Harmon’s life. But there’s one difference. While all her other senses are alert to the rapid changes around her, she cannot hear — and so misses out on important news and updates about the crisis. After following often inaccurate captions and trying to make sense of charts during press conferences, she looks to her family who sign for clarification.
Harmon is director of the American Sign Language (ASL) and Deaf Studies program at Niagara University, and she knows she is more privileged than most of America’s 48 million deaf and hard-of-hearing people, and the 466 million people with disabling hearing conditions globally. As the world grapples with a once-in-a-generation public health crisis that has already claimed more than 40,000 American lives, experts fear the deaf community is facing communication barriers that make it even harder for them and their families to navigate the pandemic.
Watch this article in ASL below.
Because of new medical terminology around the coronavirus, inaccurate captioning is common on television. Local news is live-captioned only in the top 25 markets, says Howard Rosenblum, CEO of the National Association of the Deaf, leaving the rest with inaccurate teleprompter script captioning. That puts the community at risk of being misguided and leaves them without access to time-sensitive local news. In a recent Nature article, researchers have pointed out that there are at least 15 different signs being used around the world to designate the coronavirus, adding to the confusion.
The pandemic will only continue without accurate, widespread information, therefore putting fellow citizens under crisis.
Nanette Harmon, deaf studies professor, Niagara University
All of that is reflected in the sharp spike in inquiries the National Association of the Deaf is receiving — 1,000 in the past month alone, when the organization typically gets 1,300 in a year, says Rosenblum. Craig Radford, director of Connect Direct at Communication Service for the Deaf, says a range of inquiries have flooded their coronavirus hotline, from general questions about symptoms and local guidelines to filing for unemployment benefits. And the implications of not providing timely and accurate information on the crisis to people who are deaf or hard of hearing go far beyond the community.
“The pandemic will only continue without accurate, widespread information, therefore putting fellow citizens under crisis,” says Harmon.
The United Nations Convention on Rights of Persons with Disabilities and the Americans with Disabilities Act both guarantee nondiscrimination. But experts say the official communications response to the coronavirus crisis betrays just how hard the community has to fight for even a basic recognition of their concerns. When change does come, it’s often without consultations with the community.
For most deaf individuals using coronavirus hotline services provided in ASL, English is a second language. According to Harmon, many among the deaf community demonstrate low English reading levels, approximately equivalent to that of average fourth graders.
That means even improved and more accurate captioning for television won’t suffice — which is why leading organizations for the deaf have stepped up to provide ASL interpreters to coronavirus press conferences in all 50 states and the White House. But while all states have recently included an interpreter — the White House still doesn’t have an official ASL interpreter at its briefings — they aren’t fully accessible.
According to David Wantuck, community engagement specialist at the Buffalo-headquartered Deaf Access Services, the ASL interpreter for New York state press conferences has only been seen on web broadcasts, leaving those not watching on the internet behind. Rosenblum echoes the need to ensure that accurate information is fully accessible to the community through certified interpreters who are consistently present at press conferences and important briefings.
Internationally, sign language support varies from country to country. Gum Soon Park, communication specialist at the Korean Deaf Center in Seoul, says the government there responded quickly to the need for Korean sign language interpreter services after the outbreak. Support during medical emergencies is rather efficient, she says. In 2016, the South Korean government gave legal recognition to the Korean sign language.
But South Korea is one of only 41 countries out of 193 U.N. member states that have given legal recognition to their national sign languages, binding them to their use, according to the World Federation of Deaf. Missing from that list? The United States.
In the face of a crisis of global proportions such as the pandemic, common international signs are also important. In late March, the World Federation of the Deaf wrote to the World Health Organization asking for use of international signs while providing public health information on the current crisis. The WHO has yet to announce a global sign for the pandemic.
Other experts, like Dr. Johannes Fellinger at the Hospital St. John of God in Linz, Austria, say individualized communication is also critical, especially when it comes to health services and during doctor’s appointments and medical emergencies. The deaf community often suffers from a significant delay or from a lack of culturally and linguistically competent interpretation services to navigate sensitive medical conversations. “Wouldn’t you want to contact the person you trust and get the accurate information?” Fellinger asks.
Radford says some of his deaf friends with coronavirus-related emergencies have been deprioritized and placed in waiting rooms while staff waits for interpreters. Even when interpreters are provided, communicating while wearing masks is not ideal, since many deaf people follow the movement of lips and facial expressions.
Then there’s mental health. A review of the research evidence, published in Lancet in 2018, found that deaf people are twice as likely to suffer from mental health problems as compared to the general population. Though counselors are offering telemedicine services for mental health needs, some insurance firms restrict “patients to access in-network providers, which is problematic for deaf patients seeking direct cultural and linguistic competent mental health services by deaf professionals fluent in ASL,” writes TraciAnn Hoglind, founder of Health Signs Center.
These communication barriers amplify global health emergencies like the pandemic for people who are deaf or hard of hearing. The virus doesn’t discriminate among people. The world’s response must not either.