In recent years, there has been a significant push to reduce the health disparities that minority groups face1, 2, 3, 4, 5. A minority group that often gets overlooked is the Deaf and Hard of Hearing (DHH) population. In the U.S., it is estimated that there are between 250,000 to 500,000 people who are profoundly deaf6.
Consistent with other cultural minorities, Deaf patients experience poorer health outcomes, have chronic illnesses that either go undetected or are improperly managed, or don’t properly understand the importance of their diagnoses. In a 2015 study, Deaf individuals in the U.K. were found to have high rates of CVD, hypertension, and diabetes7. Half of those who reported they had hypertension were inadequately treated or treatment was not initiated, and 29% of those who believed they did not have high blood pressure did, in fact, have high blood pressure7. These results were similar for those who were diagnosed with diabetes; 56% of participants who self-reported diabetes displayed elevated blood glucose levels at testing, which may have indicated a lack of understanding of the importance of managing this chronic illness7. This is further substantiated by the fact that, like other minority communities, Deaf people have lower health literacy than their hearing counterparts. Even highly educated Deaf patients were found to have health literacy that was on par with the average hearing eighth or ninth grader8.
And in the U.S., not only are these health disparities present, three studies demonstrated Deaf patients were less likely to visit their primary care providers than English speaking, hearing patients9-11. On the other hand, a study of Deaf patients in Florida reported that over 50% of Deaf people had visited the emergency department for evaluation of their medical problems12.
But, compared to other minority groups, the Deaf population has significantly less representation in the medical field. As of 2020, there were roughly only 200 physicians who were Deaf13. As a result, a majority of Deaf patients must be seen by providers who are unable to communicate in their “native tongue” – ASL.
This can be extremely problematic, as Deaf patients have reported that the linguistic-cultural barrier had prevented them from receiving thorough explanations about their diagnoses, treatment plans, or preventive measures. Even routine physical exams have been documented as stressful. A Deaf patient described “[their] doctor kept … pushing [them] down to make [them] lay down. [They] just said ‘[they] want[ed] to know what [the doctor was] doing,’ and he would say, ‘Don't worry. You're fine. Lay down.’”14 Consequently, these circumstances generate feelings of mistrust, fear, and that Deaf patients are a burden on the hearing providers14.
While the ADA strives to make healthcare visits just as accessible and informational for populations like the Deaf as it is for able individuals, it can’t mandate providers to learn sign language, nor can it force providers to supply an interpreter.
But, there seems to be a potential solution to this problem. Deaf patients suggest that having providers who are willing to acknowledge and adapt to the cultural differences can improve effectiveness of visits and adherence to treatment plans. That’s why I created this website – a quick “playbook” for clinics to prepare for a visit with a Deaf patient. It covers topics like etiquette when interacting with the Deaf, good practices that were suggested by several Deaf people, and how to effectively communicate with the assistance of an interpreter.
Communicating with the hearing world is inevitable for Deaf individuals. Whether they need to pick up food from a restaurant or board a flight, having a conversation with a hearing person can be daunting. Many hearing people don’t know sign language, nor do they know how to accommodate the needs of a Deaf person. This requires Deaf people to make the adjustments themselves, and it can be exhausting and frustrating.
While it is impractical to expect healthcare providers to learn sign language in order to facilitate conversations with their Deaf patients, “[s]ome thought practitioners should learn… about sociocultural aspects of deafness.”14 A common fallacy is that because many Deaf people grew up in the same country as their hearing counterparts, the only thing that distinguishes them is the language. But this is far from the truth. They have their own culture with its own values and norms, which we hearing people must acknowledge and understand.
In Deaf culture, deafness is not seen as a handicap; rather, Deaf people consider this a trait that provides them a tight knit community. So, terms like “hearing impaired,” “deaf-mute,” and “deaf and dumb” are derogatory because they imply that deaf people have lost something. In contrast, it is acceptable to say “deaf,” “Deaf,” or “hard of hearing.” Although referring to a Deaf person as "deaf" is appreciated, it is recommended to call those who have been deaf their whole lives "Deaf," as they are part of a larger community.
Deaf culture is also distinct because of the etiquette that hearing people might consider rude or strange. For example, to get a Deaf person’s attention, you may try to tap her on the shoulder, get in her field of vision and wave, or even flick the lights on and off. These actions are completely normal because Deaf people rely highly on visual means to understand their surroundings and the world. Similarly, when people (both hearing and Deaf) communicate with Deaf people, it is critical that they are cognizant of their facial expressions and body language. Deaf people often interpret tone by paying attention to the facial expressions and intensity of gestures associated with the words that are signed.
But even with the many communication norms in Deaf culture, there are a wide range of preferences that vary between Deaf individuals, which often stem from socioeconomic status and educational background. While many Deaf children attend school, not all Deaf people are fluent in sign language or know written English. Hearing people should also not assume that Deaf people can lip read or feel comfortable using their voice to help hearing people understand what they’re trying to say. And although having an interpreter to assist with translation can make conversations more efficient, some Deaf people feel apprehensive with an interpreter present while sensitive matters are being discussed. It may be helpful to document these preferences – e.g., wants a male interpreter, does not use voice, use notepad during check-in – in the patient chart so that incorrect assumptions aren’t made and clinic staff know what steps to take.
Caring for patients isn’t one-size-fits-all, as many of us know, but to appreciate the Deaf culture and meet Deaf and Hard of Hearing patients halfway will set the tone for the rest of the visit and hopefully increase your clinic’s trustworthiness with the patient.
I grew up in a family where my dad's sister is Deaf. While none of my family members (including myself) is fluent in American Sign Language, we all try to make an effort to communicate with her using ASL and adhere to Deaf communication etiquette. It is not the easiest thing to speak and sign simultaneously. But I realized as a young boy that anytime any of us stopped signing, we may as well have been speaking a completely different language. We were excluding her.
Having a Deaf aunt has also exposed us to the Deaf culture. We don't see deafness as a handicap – knowing ASL has helped in unexpected situations. When my sister and I have attended raucous football games at Michigan Stadium, we have been able to sign to each other 30 rows apart. And when my family learned scuba diving, we could sign to one another underwater.
But growing up with a Deaf aunt has also sensitized me to the challenges she faces. At the airport, she can't listen for announcements. On the sidelines at my cousin's soccer games, she can't communicate with other parents. But it wasn't until last year, when my grandfather was in the hospital, that I could appreciate how difficult being in a medical setting is for Deaf people. Whenever my grandfather's physician came to the bedside, my aunt felt out of the loop because she had no formal assistance with communicating with the doctor. While I did my best to convey to my aunt all that the doctor, nurses, and other inpatient staff were telling me, I realized she wanted to hear it directly from them.
Afterwards, my aunt told me that being in a medical setting is nerve-wracking. While things have gotten better since she was a child, she told me that she found healthcare providers are often unprepared to care for her and can be uninterested in accommodating her needs. This wasn't just her experience, either. She connected me with several of her friends who related similar complaints, and all of them felt frustrated that the information they received was the bare-minimum. When I asked them what might help, they all wished that their doctors could be fluent in ASL or, failing that, that they had an awareness of Deaf culture and how to properly communicate with Deaf people.
Currently, I am a medical scribe for two orthopedic spine surgeons, and within the first couple of months I was in this position, we had a few Deaf patients. At the end of one of the patients' visits, she actually said that she was going to refer her Deaf friends to this clinic if they ever had back or neck problems. I quickly typed my attending's best practices from that visit into the notes app on my phone. That night, I noticed that a lot of what he did matched up with what my aunt and her friends wished their doctors did better.
As someone who was a pre-med student at the University of Michigan and minored in Entrepreneurship, I wanted to create a resource to help bridge the gap between healthcare providers and DHH patients. It is my hope that this website is able to offer guidance to medical clinics across the U.S. so that their DHH patients have a more positive experience in a medical setting.
By no means am I an expert in Deaf culture or leading a healthcare clinic. I appreciate any and all feedback to make this site better.
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