Embedded: COVID-19 Vaccination and the d/Deaf Community

September 28, 2022 | Anna Harris

Over the last two years, health officials worldwide have worked tirelessly to spread the word about preventing illness and death from COVID-19 through vaccination. However, there is still more to do to promote fair and just access to health in communities that have historically faced health inequity. For example, we can advance communication concepts that benefit everyone. Deaf people—especially sign language users—are one community that is often overlooked and forgotten in public health communications.

Not all d/Deaf, DeafBlind, or hard-of-hearing people speak sign language. Although there have been no formal studies, multiple reports estimate there are 500,000 d/Deaf people in the United States and Canada who use American Sign Language (ASL) as their natural language, or the language they learn first in childhood. Research also suggests that it is the fourth most commonly used language among monolinguals (people who speak only one language) in the United States. While many jurisdictions nationwide provide communications materials that are written, spoken, and/or captioned in English, Spanish, and other languages, d/Deaf people are frequently left out of the conversation.

Poor Communication Leads to Health Inequity

CDC estimates that health inequities experienced by d/Deaf sign language users are almost always caused by miscommunication or exclusivity. Associated problems include:

  • Lack of adequate collection of health statistics due to exclusionary practices, such as using information from voice-only phone surveys and English-only written surveys.
  • Barriers in patient/provider communication, often stemming from lack of translation services or the cost and time involved in a medical session with translation services.
  • Low health literacy, since medical terminology and family medical history are often something kids learn by overhearing at the dinner table rather than direct conversation with family.
    • Lack of knowledge greatly affects someone’s chances of seeking healthcare, adhering to medical advice, and chronic disease outcomes, especially in minority populations.

COVID-19 brought these health inequities to the foreground. Over the course of the pandemic, d/Deaf and hard-of-hearing people shared personal stories about confusion, discrimination, and lack of representation when seeking information, care, and vaccination. A national online bilingual survey in ASL and English conducted in April/May 2020 concluded that d/Deaf and hard-of-hearing people were at higher risk for severe illness due to underestimating possible adverse health effects of COVID-19.

Additionally, the amount of d/Deaf and hard-of-hearing people living in poverty across the United States is nearly double that of hearing people. According to multiple studies, income is linked to COVID-19 risk factors. Since d/Deaf and hard-of-hearing people are more likely to live in poverty, this means, they may be less likely to get a vaccine or be at greater risk of COVID-19 infection or death.

Accessible Communication Strategies

Providing accessible communication is an important first step to ensuring that d/Deaf and hard-of-hearing people have access to the information they need to make informed health decisions. The most respectful and inclusive option that any jurisdiction can provide is simply to communicate in ASL. Public meetings (in-person or online), informational sessions, and webinars should include ASL translation as well as captioning. The same goes for written information on jurisdictional websites, which should provide ASL translation in the same way that a webpage might be translated into any other widely spoken language. Some approaches including embedding ASL translation videos directly into the webpage alongside the written English version and devoting a specific section for ASL videos, whether created by the jurisdiction or by the community, as seen on the Communication Services for the Deaf COVID-19 website.

For on-site vaccination events, ASL translation, whiteboards/tablets for written communication, assisted listening devices, and a laminated sheet (e.g., from the Illinois Deaf and Hard of Hearing Commission) are examples of critical communication resources.

Scheduling on-site translation for specific dates/times and hiring an on-call ASL interpreter for video remote interpreting (VRI) are ways to provide further support. If the on-site interpreter will be available at specific times, provide clear communication about this in event marketing materials.

In all materials—whether for vaccination events, webinars, and meetings, or to advertise other available options such as in-home vaccination—it is important to highlight contact information, including teletypewriter (TTY), video phone numbers, as well as email and web addresses. For an on-site event, it is especially important to include the contact information for people requesting reasonable accommodations.

Working with the d/Deaf Community in Louisiana

To narrow the communications gap, Louisiana created an online registration portal for the in-home COVID-19 vaccination program, to allow registrants to sign up without having to rely on a phone conversation. Additionally, all print and digital materials advertising the in-home vaccination program include specific directions for d/Deaf, DeafBlind, and hard-of-hearing individuals, to help connect them with fluent ASL speakers via email, video phone, or voice phone in case further assistance is needed.

Louisiana also created an ASL video advertising the program.

Looking to the Future

The COVID-19 pandemic has shone a spotlight on the absolute necessity of accessibility and inclusivity in public health communication. The challenge will be to continue this important conversation post-pandemic. Let’s not lose momentum, but instead use this as a way to create a more equitable future.