by Kristy Buffington, MA, NIC, April 24, 2020
The Coronavirus pandemic has created worldwide disruption and left many of us searching the headlines for information and resources we can trust. Access to reliable COVID-19 information is vital, and lack of access for deaf people substantially increases their isolation and vulnerability during a time of heightened stress.
Access through Interpreters/Captioning
[Image description: Blue and white computer-generated drawings of the various disability accommodation symbols. The drawings are arranged in a square with a large question mark in the middle.]
The National Registry of Interpreters for the Deaf recently issued a position statement calling for the use of Certified Deaf interpreters (CDIs) during Coronavirus press conferences. CDIs are interpreters who are native users of American Sign Language (ASL) and are themselves deaf. They provide interpretation with linguistic fluency that is understandable to large portions of the deaf population. While many city and state governments are doing an excellent job of providing CDIs for press briefings, others are providing unqualified interpreters or failing to provide interpreters at all, such as at the federal level during White House briefings (DPAN.TV has taken it upon itself at their own expense to provide interpreters and captioning for COVID-19 White House briefings).
While the provision of interpreters increases access, it does not guarantee access for deaf people who rely on captioning or receive their information via social media. Much of the content on social media platforms is either uncaptioned or auto captioned. Auto-generated captions, used by Facebook, Instagram, YouTube, and some videoconferencing platforms such as Zoom and Google Hangouts, are notoriously inaccurate, often to the point of being non-sensical. Although captioning software is improving, technology has yet to equal the skill of a human real-time captioner.
The provision of press conference interpreters further does not guarantee access for those among the larger deaf population who are particularly vulnerable, such as those with language deprivation, deafblind people, deaf prison inmates, and deaf children.
Language Deprivation and Health Literacy
Language deprivation results from the chronic deprivation of an accessible language within the critical language window, the first few years of a child’s life. Language deprivation is rare among hearing children and generally only occurs in cases of extreme abuse or neglect. Since 90% of deaf children are born to hearing parents and do not acquire an accessible (visual) language through a natural first language acquisition process and because audiologists and other medical professionals frequently advise hearing parents avoid ASL and rely solely on technology such as cochlear implants and hearing aids, language deprivation is much more common among deaf children and adults (Hall 2017; Murray, Hall, and Snoddon 2020).
Deaf people with language deprivation exhibit common tendencies, including disorganized or incorrect syntax, limited vocabulary, a lack of incidental learning or limited fund-of-information deficits, difficulty expressing and understanding time, and difficulty with story structure and abstract thinking (Crump and Hamerdinger 2017; Hall, Levin and Anderson 2016). Deaf people with language deprivation tend to be concrete thinkers and may struggle to understand others with more fluent language. In turn, those with more fluent language may struggle to understand those with language deprivation.
Deaf people as a whole have lower health literacy rates than hearing people and deaf people with language deprivation may have even lower health literacy, struggling to understand basic medical terminology or functions of the human body (Hedding and Kaufman 2012; Pollard and Barnett 2009; Smith and Samar 2016). This raises the question of how are deaf people with language deprivation understanding COVID-19, including what they’re seeing on social media?
A deaf woman with language deprivation recently described to me something she’d seen on Facebook. She used the sign commonly glossed as MONSTER to describe virus transmission from one person to another through a vampire-like bite on the neck. As I explained the cough and fever that often accompany COVID-19, she shook her head in agreement and then added BITE on-the NECK, as if I’d forgotten that symptom or mode of transmission.
If she presented at a hospital or clinic with this belief would a medical professional have enough training to understand that this is most likely related to her language deprivation? Would that same professional have enough time, patience, and empathy to sensitively navigate the situation and explain, with the assistance of a qualified medical interpreter, virus transmission? Finally, would she understand the professional’s explanation, or would it influence her thinking or change her belief or behavior?
Other Vulnerable Groups
[Image description: Two women with their hair pulled back and wearing masks, gloves and eye protection stand in front of two commercial washing machines.]
Pro-tactile ASL (PT-ASL) is a communication philosophy that allows deafblind people and their support service providers (SSPs) to relay linguistic information by signing into one another’s palms and to convey prosody and visual information on a person’s back, shoulders or thighs (see the link above for a video example). PT-ASL relies on touch and requires signers to be close to one another. With the advent of social distancing many agencies have limited or suspended SSP services leaving deafblind people extremely isolated and struggling with unmet accommodation needs.
Prison inmates are at increased risk for COVID-19. This is especially true for deaf inmates as prisons, in direct violation of the Americans with Disabilities Act, frequently isolate deaf inmates and refuse to provide qualified interpreters. Deaf, deafblind or deafdisabled prisoners with no accommodations or access to information may not even be aware of the pandemic and their increased risk for COVID-19. Subsequently, they are unable to advocate for early release or other measures to protect themselves.
The National Association of the Deaf maintains a list of care facilities across the U.S. that specialize in or are knowledgeable about the communication needs of deaf people. However, this list is small and many states have no such services, leaving deaf senior citizens or deaf people with developmental disabilities who live in care facilities isolated with staff who know little to no ASL. Like deaf prisoners, those within care facilities without adequate access to information are highly vulnerable and may be unaware of how best to protect themselves.
Experts are concerned that rates of child abuse may rise among the general population due to COVID-19 stress. Deaf children are particularly vulnerable as family members may or may not sign and as they are isolated from their peers and support staff such as interpreters and teachers for the deaf. Prior to Coronavirus, researchers reported that deaf children suffer trauma more than hearing children and are twice as likely to be victims of sexual abuse. Given extended shelter in place orders and increased stress, these grim statistics will likely increase.
[Image description: A group of graduating high school students from the Idaho School for the Deaf and the Blind, dressed in black and white caps and gowns, pose for a photo celebrating their graduation.]
Deaf students have lower postsecondary graduation rates than their hearing peers. Research further shows that deaf people experience increased mental health risk factors and a lack of specialized mental health care compared to the general hearing public. Because of the rapid move to online education deaf students may be overwhelmed. I’ve recently had several students call me in tears. They are emotional and frustrated with a lack of accommodations, including no captions or inaccurate captions on instructor’s recorded lectures/ videos and long wait times for disability service offices to add recordings of interpreters to lectures. Many of them feel undervalued and overlooked by their colleges and universities. Some feel like failures and are grappling with the decision to drop-out.
The university where I teach has sent email announcements to all students reminding them of the availability of remote counseling services at no charge. While this is helpful for hearing students it may not adequately benefit deaf students as counselors are frequently untrained in the communication needs of deaf people and in the unique forms of oppression and trauma they experience.
The Role of Anthropology?
[Image description: Two blind children with white canes walking down the sidewalk. Both children have posters celebrating White Cane Safety Day. A sighted teacher walks behind them.]
- Medical anthropologists can:
- work to help inform and improve the understanding of healthcare and mental health professionals regarding the needs of special populations such as deaf people
- undertake research that helps to direct and inform clear and accessible healthcare policy and advocate for inclusion and equitable access at all levels of healthcare
- further research how vulnerable groups within the larger deaf population, including deafblind, deafdisabled, deaf people with language deprivation, and deaf refugees, migrants and immigrants conceptualize health, illness, risk, and mental well-being
- present their research and lend their professional support to organizations that work on behalf of the underserved, such as The American Deafness and Rehabilitation Association (ADARA), the Association of Medical Professionals with Hearing Losses (AMPHL), and the National Center for Deaf Health Research (NCDHR)
- Educational anthropologists can:
- research transition pedagogy and help implement inclusive early transition programs for children with disabilities, increasing rates of postsecondary success
- collaborate with colleagues in their university’s Department of Education and/or Special Education
- Anthropologists who teach at the college or university level can:
- be flexible during this time and check-in with their students with disabilities
- design their courses using universal design
- educate themselves on common postsecondary accommodations, and if need be, seek advice from their campus disability service office or organizations such as their state commission for the blind or council for the deaf and hard of hearing
- Professional anthropologists, regardless of sub-field, can:
- be welcoming and supportive of students with disabilities into higher education and as anthropology majors
- be collegial and supportive of anthropologists with disabilities in the profession
- advocate for the provision of equitable accommodations at professional meetings and conferences
- establish a professional network and collaborate with professionals in disability-related fields such as vocational rehabilitation counselors, disability resource and transition coordinators and disability advocates
Author’s note: Following the lead of the NDC, I use the term deaf in an inclusive manner to include those who identify as deaf, deafblind, deafdisabled, hard of hearing, late-deafened and hearing impaired.
Kristy Buffington, MA, NIC, is the Post-Secondary Transition Coordinator for the Idaho Educational Services for the Deaf and the Blind (IESDB), a licensed, certified Sign Language interpreter and an adjunct instructor for the Idaho State University Department of Anthropology.