Amplifying the voices of people from the Deaf and Hard-of-Hearing community is important to us, especially during Deaf Awareness Month and on the International Day of Sign Language. We spoke with Trish to learn about her experience navigating healthcare as someone who is hard-of-hearing. See what she has to say, and how the medical community can make healthcare more accessible.
When Trish’s parents noticed she didn’t start walking or talking at the expected ages as a toddler, they realized something was wrong. An appointment with an ENT doctor revealed that Trish* had hearing loss. The doctor’s recommendation was to install a highly experimental prosthetic in Trish’s ear – but the prosthetic failed almost immediately after it was put in. Trish’s childhood was marked with undergoing several surgeries to resolve the damage caused by severe chronic otitis media, a recurrent infection of the middle ear.
Going through an eighth surgery before even starting high school was not something Trish wanted to do. But that was exactly what her second ENT told her was necessary during an appointment.
Disheartened at the thought of this, Trish began crying. Her doctor’s reaction? Laughter. It’s been over a decade since then, but that humiliating experience still feels fresh. In total, it took nearly 20 years for Trish to receive an official diagnosis – conductive hearing loss.
A far too familiar experience within the community
Trish’s experience with the medical community is nothing new. There’s a lack of trust toward physicians within the Deaf and Hard-of-Hearing (HoH) community. How the medical community views deafness is what fuels this distrust. According to an article by Hoang, LaHousse, Nakaji and Sadler, deafness is seen as a pathophysiological disease that needs to be “cured” and not its own unique culture and language. Additionally, others within the community feel that physicians act in a paternalistic manner. For Deaf and HoH people, this demeanor contributes to the feelings of stress, strong negative emotions, and a loss of autonomy when discussing healthcare.
A clear gap in knowledge and experience
The overall knowledge gap also plays a role in the challenges of getting the consistent and proper care for Deaf and HoH patients. After receiving care from a handful of ENTs in both the U.S. and Canada, Trish noticed a glaring pattern. ENTs and those who work in the field have little to no experience or knowledge on Deaf culture or sign language.
“I’ve never met an ENT who knew the basic signs applicable to their role. That made me sad because it showed that there is this idea that the Deaf and HoH people are broken
and that we’re the ones who need fixing, which is not true. We’re on a spectrum. Some of us choose to speak. Some of us use sign language. Some have cochlear implants, some don’t. We’re all very unique but what matters is the choice,” said Trish.
“WE SHOULD BE ABLE TO CHOOSE HOW WE INTERACT & COMMUNICATE WITH THE WORLD.”
A change in how physicians interact and care for their Deaf and HoH patients isn’t something that’s nice to have; it’s necessary. Nearly 2.5 billion people worldwide will be living with some degree of hearing loss by 2050, according to the World Health Organization’s (WHO) first World Report on Hearing. At least 700 million of these people will require access to ear and hearing care and other rehabilitation services unless action is taken.
Accessing healthcare as a HoH person during the pandemic
While Trish has a few doctors for various health needs, only one has tried to provide her with an accessible experience throughout the pandemic. Her other doctors are often hard to reach. Trish says she struggles to get a hold of them, even on the phone. When she does reach them through phone, she has a hard time understanding them due to the environment that they’re in or the quality of the phone they use.
“I DEPEND ON LIPREADING AND THE REMAINDER OF MY HEARING TO COMMUNICATE IN THE TIMES THAT I HAVE TO GO TO THE DOCTOR’S OFFICE. MASKS MAKE THIS DIFFICULT,” – TRISH.
One of Trish’s doctors has made great effort in providing her with accessible telehealth appointments, though. Since this doctor is aware of Trish’s hearing loss, she always faces the camera so Trish can lipread. By Trish’s request, the doctor also speaks slowly in a raised voice so that Trish can understand her. “That’s why she is the doctor that I’ve continued to see consistently, whereas others I’ve had to change on multiple occasions because I can’t communicate with them or they’re not willing to meet me halfway,” said Trish.
A doctor who never treated her as someone to fix
While Trish has had difficult experiences with doctors throughout her life, her first general physician is someone she thinks of fondly. “He never judged me. He never treated me as if I were broken. He always took the time to communicate with me in a way that I felt comfortable. He was never patronizing or enforcing things. He made me feel like a whole and complete person,” said Trish.
How to improve the patient experience for the Deaf & HoH community
| Learn about the human experience of the people you treat | Change the bias of “technology-first care and oral-first communication” |
|---|---|
| Many of the Deaf and HoH people use a form of sign language (ASL, BSL, LSQ, PLSL) over oral communication because it’s usually their first language. There are so many resources that can teach you basic signs applicable to your role. | While both figures made notable contributions to society, Alexander Graham Bell and Helen Keller caused great harm for the Deaf and HoH community which gets little to no attention. I recommend learning about Bell’s mission to forcefully assimilate the Deaf into the hearing world and his involvement in the Second International Congress on Education of the Deaf, when sign language was banned. It’s also worth to read about Keller’s stance on eugenics. |
| Give your patients an accessible platform to schedule appointments and conduct virtual ones. If needed, it can make the logistics of getting an interpreter much easier for those who use one. It also makes the experience less stressful for those who don’t use a sign language. | For many doctors, implementing a form of technology, like hearing aids or cochlear implants, seems to be the first and only cure all solution. However, the real freedom to choose technology or not gets taken away. There is no one right way to be Deaf or Hard-of-Hearing. The choice is what matters. |
| Do some research. That includes even just Googling or reaching out to your local Deaf & HoH community. | — |
| Put some extra effort into the construction of the office environment. Having good quality acoustics can make a big difference for those who depend on their hearing. | — |
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