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“Deaf Community Deserves Greater Access to Medical Information during Covid-19”

Above photo: Image of the American Sign Language sign for ‘Interpreter'”.

By Claire Cummings

One click. The news pops up on your TV and you see the Governor of New York’s press briefing. In the corner of the screen near him there is a very animated individual clad in all black gesturing with their hands. You recognize this individual as an American Sign Language (ASL) interpreter and are glad to know that in the face of a pandemic deaf  individuals are able to watch the same briefing as you, live, and in their primary language. It is comforting to believe that there isn’t language inequality in the United States. But three thousand miles away from Governor Cuomo’s press briefing a deaf patient in Southern California is about to experience a very different reality. 

Andrea Lust, an American Sign Language interpreter, who primarily works in medical interpreting, recounted to me the experience of a deaf patient who had their lifeline to language taken away in a hospital in Southern California. Imagine, checking into a hospital during a pandemic, knowing that the death toll of COVID-19 has claimed 134,704 lives in the United States as of July 2020.Having an in-person interpreter for your appointment isn’t an option. You must instead use Video Relay Interpreting (VRI) during your appointment; an interpreter provided for you via an iPad will be the primary source of communication between you and your doctor. Now, as you enter your appointment, critical enough that you couldn’t use a telehealth meeting, the iPad is in the room with your interpreter on it and a nurse is holding the iPad because the stand for the iPad cannot be located. The nurse holds the iPad in one hand while continuing to go about their other duties in the room. The iPad continuously moves around with the nurse as the interpreter on the screen politely requests the nurse to hold the screen steadier since they cannot see what the patient is signing with all the movement. This request frustrates the nurse who has also been covering the video camera with their thumb. Your interpreter cannot see you, and your only access to language is being severely compromised. The interpreter points out this issue to the nurse and the nurse hangs up the video call after telling your interpreter to “just do their job.” Just like that, you can no longer effectively communicate in an environment where information is a matter of life and death. 

This reality is all too vivid for deaf patients. Linguistic barriers are a large problem in medical settings because many healthcare providers do not have effective communication practices in place for their deaf patients. This is primarily due to a lack of awareness. Resources are not often allocated to create more effective means of communication for deaf patients because the importance of this language access is overlooked, putting deaf patients at a much higher risk of potentially life-threatening mis-diagnoses. 

Federal disability discrimination laws give patients a right to equal access, but according to the National Association of the Deaf, “Health care providers do not have to provide a specific type of accommodation if they can demonstrate that doing so would be an undue burden (a significant difficulty or expense).” This means many health care providers often look at cost as an “undue burden,” cutting access to proper interpreting services for their deaf patients out of financial necessity. The result is lower quality of care for deaf patients perpetuated by unequal language access.

Although federal disability discrimination laws are intended to mitigate against unequal access, the “undue burden” loophole runs up against a lack of awareness among staff at many hospitals and medical clinics about the linguistic needs of the Deaf community. This lack of awareness is coupled with a lack of clear, actionable guidelines to help hospitals and medical clinics navigate the issue. Deaf people have historically been discriminated against; but now with the world facing a global pandemic, the harms of the disparity between linguistic minorities and the majority population are sharper than ever (see attachment below). Without effective communication channels between healthcare providers and patients, misdiagnosis leading to life threatening situations is a very high risk. 

But what about before a patient even gets to a hospital? During COVID-19, language barriers have become an even bigger issue in terms of preventive care. Communicating public health information during a pandemic requires that information be made widely available to prevent individuals from ending up in the hospital to begin with. 

Live press briefings with government and public health officials are a key source of timely public health information. The National Association of the Deaf (NAD) and the Deaf community have been advocating for video press conferences to have ASL interpreters so that deaf individuals can receive the same information at the same time as the rest of the public. This is critical because we want to keep as many people healthy and out of the hospital as possible to prevent further spread of the virus. 

There are an estimated 11 million+ individuals in the United States that have some form of hearing loss. Immediate access to information for the Deaf community is made possible by interpreters at government press briefings. Instant access to information can mean the difference between life and death. As of now, the governors in all 50 states have a designated ASL interpreter for all their briefings. This has been tremendously beneficial, but there is still one very large gap in information access: The White House. 

Despite letters from the National Council on Disability (NCD), the NAD,  and members of congress, the White House Coronavirus Taskforce has still not provided a sign language interpreter in their briefings. The importance of having professional sign language interpreters at these briefings is underscored by the inadequacy of captioning alone for the highly visual language of ASL. Captioning is often inaccurate and difficult to follow. Captions do not convey emotion. Captions do not capture all of the nuances and connotations of spoken discourse. Deaf people deserve access to the information in their primary language. Having interpreters present when the briefing is aired means the Deaf community does not have to wait hours or even days to access the same information as those who are hearing. The visibility of ASL interpreters at press briefings also sets a standard for other institutions to follow. It raises awareness of the Deaf community’s needs, promotes inclusivity, and emphasizes the importance of language accessibility. Language is a human right, not an optional nicety. 

To improve access to public health information for the deaf, we need more awareness of the community’s communicative needs so deaf patients are treated with respect, better guidelines to help healthcare facilities provide adequate interpreting resources, and interpreters for live public health briefings. These alone will not ensure linguistic equality will be attained, but they represent an important starting point amidst the exigencies of COVID-19. Right now we must stand with the Deaf community in the battle for getting an interpreter in the White House. We can all aid in this effort by joining an ongoing letter writing campaign to petition for an interpreter in the White House.

Update as of the 29th August 2020: The NAD has filed a lawsuit against the White House demanding the usage of an interpreter during White House press conference briefings. The White House has responded to this and claims that they are already providing accessibility.

From JLA:

The co-editors-in-chief (Das and LaDousa) of the Journal of Linguistic Anthropology are delighted to feature three articles contributing to the study of Deaf communities and the special challenges they face in issues of access to and recognition of communicative practices. Cooper and Nguyễn (2015) examine the juncture of national language education efforts and community organizing to identify challenges to prevailing language hierarchies, Edwards (2018) considers infrastructure and its role in the possibilities of communication for the DeafBlind, and Hoffmann-Dilloway (2008) accounts for the regimentation effects of efforts to standardize Nepali Sign Language

– Cooper, Audrey and Trần Thủy Tiên Nguyễn. 2015 “Signed Language Community-Researcher Collaboration in Việt Nam: Challenging Language Ideologies, Creating Social Change.” Journal of Linguistic Anthropology 25 (2): 105-127.
-Edwards, Terra. 2018. “Re-Channeling Language: The Mutual Restructuring of Language and Infrastructure among DeafBlind People at Gallaudet University.” Journal of Linguistic Anthropology 28 (3): 273-292.
-Hoffmann-Dilloway, Erika. 2008. “Metasemiotic Regimentation in the Standardization of Nepali Sign Language.” Journal of Linguistic Anthropology 18 (2): 192-213.