The United Nations recently recognized September 23 as the International Day of Sign Languages, which endorses sign language as a human right and equal in status to spoken languages. Following this feat, it’s time to shine light on deaf people and culture, as well as to spotlight some of the unique issues facing the deaf population. (For medical purposes, the term “deaf” used in this article also includes persons who identify as Deaf, DeafBlind, DeafDisabled, Late Deafened, and Hard of Hearing.) With healthcare access a perennial headline these days, we need to call attention to how one simple factor exacerbates health inequities and healthcare barriers for millions of deaf people: the lack of meaningful and effective communication access.
Language barriers are a significant healthcare problem—and this is not just a problem for second-language speakers. Deaf people who communicate using sign language, most commonly American Sign Language (ASL), frequently do not have access to clear and efficient communication in the healthcare system, which deprives them of critical health information and qualified health care. Studies show that deaf patients, compared to hearing patients, make less frequent visits to their primary care provider and make more trips to the emergency room, which is likely due to the lack of communication access. The lack of health information and communication access in ASL often results in deaf people, including those who are educated, scoring lower in measurements of health literacy and health knowledge. Due to inequity and audism, deaf people are at a higher risk for adverse health outcomes compared to hearing (non-deaf) Americans, such as cardiovascular health, testicular cancer, and pregnancy and birth.
The Americans with Disabilities Act (ADA) requires equal access and effective communication in all places where the general public interacts, which includes the employment, transportation, education, and healthcare sectors. Section 1557 of the Affordable Care Act (ACA) requires primary consideration to be given to the person with a disability their choice of service. Hospitals and healthcare providers are required by law to provide interpreters and other effective accommodations that allow them to communicate with the deaf patient, including deaf individuals accompanying a hearing patient. The ADA regulation, however, is written in equivocal and optional language, using words like “should” and “may.” One of the last few sentences of the regulation reads: “[A] hospital need not provide communication aids or services if doing so would fundamentally alter the nature of the goods or services offered or would result in an undue burden.” The inclusion of this statement creates a loophole, of which many in the healthcare system take advantage. The results can be devastating. Several months ago in Minnesota, two deaf parents didn’t know their son was dying in front of them because the hospital refused to provide interpreters. Just moments after the parents were finally provided communication access, their son died in the nurse’s arms. They subsequently lost their lawsuit pushing for equal communication access.
Even on the individual level, most doctors and healthcare professionals do not know how to communicate or work with deaf people. For example, I was misdiagnosed last year because of a doctor’s unfamiliarity with treating deaf patients. This was evident in his physical shaking and awkward demeanor as he tried to engage with me. Additionally, my rights to effective communication were denied, as they did not provide an in-person ASL interpreter. I suffered two weeks with pneumonia (while taking the wrong medication) and later had to go to the hospital for an emergency antibiotic IV. Although doctors have the best interests of their patients at heart, these same doctors are not always appropriately educated to become culturally responsive practitioners.
One of the biggest attendant problems facing the deaf community is the healthcare industry’s continued approach to deafness as a diagnosis to be cured. The effects are especially profound on millions of pediatric patients. Over 90 percent of deaf children are born to hearing parents with no previous exposure to ASL or the deaf community. When parents turn to medical professionals for their expertise, it often leads to the introduction of an invasive cochlear implant surgery as a “cure” for the newly diagnosed infant, which is falsely marketed as helping a child to hear much like their non-deaf peers. This method, along with actively discouraging ASL (an act of language deprivation), is not the best solution. The most important thing pediatricians, general physicians, and health professionals can do is to learn about how influential ASL is in the success of deaf children and deaf people, and actively promote language acquisition on top of encouraging enrollment into early intervention and early childhood education ASL programs.
The current healthcare system still has a long way to go to make improvements in health access and equitable communication for deaf patients. Undoubtedly, these improvements are achievable—it just takes acceptance, advocacy, and meaningful action. For starters, medical and public health schools nationally need to implement curricula about intersectionality and working with people with disabilities, and have in-person interactions with diverse communities. Hospitals, schools, and healthcare organizations need to include cultural competency and humility training with authentic community representation. They also need to understand that deaf people have different accommodation needs. Some deaf people can read lips (although studies have found that only 30 percent to 45 percent of what is said is generally understood), while others benefit from communicating via pro-tactile ASL. Some deaf people rely entirely on in-person ASL interpreters, while others can speak for themselves. There is no one best accommodation for all deaf people.
Deaf individuals face discrimination daily; when it comes to their health needs, they cannot afford any additional prejudice. Complete communication access and understanding between themselves and health experts will go a long way towards reducing the community’s health inequities. As just one example, a cross-sectional study found that deaf participants who had direct ASL communication with their primary care provider were more likely to access preventive care. Meantime, if you are a healthcare provider looking to change the current status quo, here is one way to start: learn how to sign “how are you?” That simple action can help break down barriers between healthcare professionals and deaf patients. By continuing to learn more about the deaf community, culture, and language, you will begin to understand why we hold them very near and dear to our hearts.
TraciAnn Hoglind is a second-year MPH student at the School of Public Health. She is currently working on establishing a national nonprofit organization that will provide ASL accessible health services for the diverse deaf community.
Resources for healthcare professionals:
National Association of the Deaf (NAD)
World Federation of the Deaf
Association of Late-Deafened Adults (ALDA)
Deaf Health Communication and Quality of Life Center
American Association of the Deaf-Blind
Language Acquisition for Deaf Children
LEAD-K (Language Equality and Acquisition for Deaf Kids)
The Nyle DiMarco Foundation
Deaf Schools and Programs for Deaf and Hard of Hearing Students in the US