Janelle Nielsen was in the hospital without an American Sign Language interpreter to help her understand her health emergency.
“I almost died,” Nielsen signed in ASL, according to a spoken English interpreter. “If I had a live interpreter, if it was provided to me, it would have been OK. I am not OK. It was close, it was very scary, and I was very angry.”
Her experience isn’t unique within the deaf community. Nielsen, who is a licensed massage therapist at Cradle Your Soul Yoga and Massage in Draper, joined a handful of other individuals Wednesday afternoon for a panel at Utah Valley University in Orem to talk to students about eliminating health disparities between the deaf and hearing communities.
Only 17% of signers receive an interpreter in health care settings, according to Jared Allebest, the founder of Allebest Law Group and a specialist in deaf rights.
“That number is unacceptable and we need to change that,” he said in spoken English.
Allebest, who switched between spoken English and ASL throughout the panel, said he knows of one instance where a patient wasn’t given access to an interpreter in a hospital and died not knowing he had cancer.
He and Nielsen were instrumental in forming a protest in October at the state capital to bring awareness to the issue of hospitals not providing adequate interpretation for patients who are deaf.
Hospitals often utilize a video remote interpreter, who Janelle said usually means using an interpreter from out of the state who isn’t certified or licensed in Utah and is doing interpretation through the use of an iPad. Nielsen said using the devices aren’t as good as having a physical interpreter in the room because internet connections can be unreliable, the devices aren’t always charged and the video feed can be pixelated, making it hard to understand the interpreter.
But hospitals still use them, she said, because they see it as the best option financially.
“It is cheap,” Nielsen said in ASL, according to a spoken English interpreter. “It is, that is it, and speed. And it is faster for them, but that is still questionable.”
The panel warned against medical professionals making assumptions about a patient’s hearing ability. McKenzi Smith, a CNA for the Jean Massieu School for the Deaf, said people assume she is hard of hearing, but she identifies as deaf.
“I can speak well, but I do not hear,” Smith said in ASL, according to a spoken English interpreter. “My hearing aid, taken off, I cannot hear.”
Allebest, who considers himself culturally deaf, said it’s offensive when someone exaggerates their speech when trying to communicate with him.
Smith suggesting using a pen and paper could be adequate for smaller conversations, but that an interpreter should be brought in for appointments. She also said that if ASL is a patient’s first language, they might not have a strong command of the English language.
The panels suggested for people who are hearing to look at the signing patient, not the interpreter. Nielsen said it can be dehumanizing when a hearing person looks to the interpreter, not her.
“Ignore the interpreter, it is as simple as that,” Nielsen said in ASL, according to a spoken English interpreter.
Smith said that even if a hearing person tells an interpreter not to interpret something do a deaf person in a room, they still will.
“If you don’t want us to know, leave the room,” Smith said in ASL, according to a spoken English interpreter. “Because the interpreter is me, is my shadow ears. I need to know what is being said.”
Dan Mathis, a native in ASL and a lecturer in UVU’s ASL and deaf studies program, said that not all people who are deaf use sign language. While Mathis was born deaf, there is a wide range in the community’s hearing ability.
He said that while a hearing person should ignore an interpreter, someone who is deaf will need to look at them.
“I have to hear what you are saying and I hear with my eyes,” Mathis said in ASL, according to a spoken English interpreter. “I am working and I am trying to look at both of you.”
He suggested that the healthcare industry should recruit people who are deaf and hard of hearing as employees, and advocated for hearing parents to always request for an interpreter for children who are deaf.
Michael Ballard, an assistant professor of ASL and deaf studies at UVU, said that people who are hearing often make decisions on behalf of the deaf community without asking them. He said he knows of a couple who gave birth at a hospital that never had an interpreter called in to interpret a lactation consultant.
“So the deaf mother wanted to breastfeed, but she was never taught how to teach the baby to latch, so she just used formula, and all of that was a barrier of language which could have been resolved with access to communication,” Ballard said in ASL, according to a spoken English interpreter.