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MOVE TO INCLUDE is a partnership between WXXI and the Golisano Foundation designed to promote inclusion for people with intellectual and physical disabilities. Through programming and special events, WXXI and the Golisano Foundation look to build a more inclusive community by inspiring and motivating people to embrace different abilities and include all people in every aspect of community life.

Rochester's Black deaf community speaks up about barriers to health care

Max Schulte
LeeAnne Valentine at her home in Fairport. Valentine is a clinician specializing in marriage and family therapy at the Deaf Wellness Center at the University of Rochester.

The pandemic has shed light on disparities within the Black community. In addition to systematic racism, lack of access to health information and health literacy, there are additional barriers that affect Black deaf people who are a minority in an already marginalized group.

When LeeAnne Valentine walks into a medical facility, she is hyper-aware of these barriers. Valentine is a deaf Black woman and communicates using American Sign Language.

She said she ran into a problem with an interpreter last year when she sought treatment for a gallbladder issue. She said she could not eat or sleep, and wanted an MRI. At the doctor’s office, Valentine said her interpreter wasn’t helpful.

“Her tone of voice was not very inflected,” Valentine said, who described the interpreter’s signing as “very neutral” and “monotone.”

That barrier in communication can affect a deaf person's experience at the doctor and overall trust in the medical community. For Black deaf people, the mistrust is sometimes more amplified.

Some Black deaf people communicate using Black American Sign Language (BASL), a dialect of American Sign Language.

Credit Max Schulte / WXXI News
Joseph Hill, an assistant dean of faculty recruitment and retention at the National Technical Institute for the Deaf, sits at his home in the 19th Ward in Rochester.

Valentine said once she received a Black interpreter, she was able to convince her doctor to give her an MRI.

“She actually interpreted what I said, with the intent and the tone, plus my emotions, '' said Valentine. “She conveyed that to the doctor and the doctor is, like, ‘oh, okay, okay, fine.’ And he finally took some action, and I found out I needed emergency surgery.”

In a health care setting, it can make all the difference to have a Black interpreter, but only 13% of the more than 10,000 sign-language interpreters in the U.S. identify as people of color, according to a national registry.

Kristi Love is trying to change that. Love is an interpreter and also the coordinator and one of the founders of the Randleman Program at Rochester Institute of Technology, which provides training and mentorship for interpreters of color. Love said many young Black people are unaware of ASL interpreting as a career, and the few that enter interpreting programs often drop out due to feeling isolated.

“At times that’s important to be able to relate to somebody culturally,” said Love.

She said it is the responsibility of the medical community to be informed on the cultural needs of deaf patients. Patients visiting their doctors offices may not have the same level of access to interpreters or special ASL video discharge instructions that are provided by large institutions like Strong Hospital.

Emergency room physician Dr. Jason Rotoli ensures he approaches his patients with cultual awareness and humility. In his role as a deaf advocate, Rotoli teaches other hearing physicians on better ways to connect with deaf patients. He said accessibility and representation are the most important in serving deaf communities, and even with an interpreter, hearing physicians should consider there is lack of access to health literacy that will  affect the way important information is shared.

“The deaf person oftentimes may feel a little bit fearful of providing all the information that's necessary, or maybe they don't even know which information is necessary,” said Rotoli.

One of the challenges of interpreting in a medical setting is that ASL is not a direct translation of English.

Valentine agrees and said terms like heartburn and stroke are foreign to some deaf people because they aren’t often used in conversation.

“All these medical conditions, you know, that people don't understand they don't have access to. So it's hard for them to explain what's going on,” said Valentine.

These barriers can also affect outreach to the local Black deaf community, something that has been especially problematic during the COVID-19 pandemic.

A study by RIT National Institute for the Deaf in 2020 found there is a need for improved guidance on managing COVID-19 and navigating health care for deaf communities. The study showed deaf people who suspected they have COVID-19 symptoms, frequent emergency rooms to seek treatment, despite guidelines for people to stay home and call their doctor.

Another study by NTID on health literacy found that 78% of deaf students of color felt that they received inadequate health literacy.

Credit Max Schulte / WXXI News
Kristi Love, interpreter and coordinator of the Randleman Program at RIT, with JT Reid, senior admissions counselor at the National Technical Institute for the Deaf. Reid is also a board member for Partners in Deaf Health.

JT Reid, a board member of the nonprofit Partners in Deaf Health, who is also Black and deaf, said he didn't see a large turnout of Black deaf people during vaccine clinics.

“I honestly maybe seen two or three Black deaf people there, “ said Reid. “So I'm like, where are the rest of my community? It seems like they just did not get the information, and that's very unfortunate.”

Reid believes lack of access to health care information contributes to health disparities in the Black deaf community.

Many doctors speculate that Black deaf people experience greater health disparities, however the general deaf population is often excluded from medical research causing the specifics disparities to be left unknown.

Valentine said outreach in the Black deaf community will take extra effort. She blames years of discrimination for fear and mistrust of the health care system. She says Rochester’s Black deaf community is small, but accessible and she encourages hearing people in and outside medical facilities to spend some time with them.

“Just because we're Black and deaf, please don't ignore us. You know, we want to thrive. We want to stand on our own,” said Valentine.

This story is reported from WXXI’s Inclusion Desk.

April Franklin is an occasional local host of WXXI's Weekend Edition.