Barriers facing Deaf, DeafBlind, blind and partially sighted (DDBBPS) people are well known within those communities, but can be overlooked in health-equity research. A new study by York University PhD candidate Sammy Jo Johnson aims to address that gap by documenting challenges the DDBBPS community faces within the health care system.
At York University, Johnson’s research in the Faculty of Graduate Studies' Department of Critical Disability Studies, has examined challenges education, health care and public services experienced by Ontarians who are Deaf.
Among her projects was one led by Professor Rachel da Silveira Gorman that explored medical inequality affecting Deaf, disabled, racialized, women and trans communities and other equity-seeking groups in Canada.
The project resonated with Johnson, who is a Child of Deaf Adults (CODA). She discovered that several members of the research team also had personal connections to DDBBPS communities and firsthand knowledge of obstacles people encounter when accessing care.
“We knew, from these connections and experiences, that there are urgent barriers to care that must be dismantled,” she says.
Yet, Johnson also recognized that many of those experiences had not beend adequately documented in health-equity research.
“The health and well-being of DDBBPS people and communities remains profoundly under-researched,” says Johnson. “It is important to better understand the barriers to care and the policy and practice decisions behind them so that we can intervene in and improve access to care.”
To address those gaps, Johnson and her co-authors launched a study, supervised by Gorman and building on her broader research. The study aimed to centre the perspectives and knowledge of DDBBPS populations, rather than relying solely on external academic interpretations.
The team reviewed academic literature alongside community and organizational reports, advocacy publications, presentations and other materials created by and for DDBBPS communities.
Johnson and co-authors Yoonmee Han and Iffath Unissa Syed identified six recurring sources of inequity within the health care system.
Communication barriers emerged throughout the research. Studies described interpreter requests being ignored, denied or replaced with alternatives that failed to meet patients’ needs. Johnson also found that important health information is often delivered in formats that are difficult or impossible for some patients to use, including printed forms, written materials and videos without accessible alternatives.
The review also highlights reports of health care providers dismissing communication needs, assuming they understood what accommodations patients required or focusing more on a person’s disability than the issue that brought them in for care. Over time, these experiences can discourage people from seeking care, contributing to poorer health outcomes.
Beyond those interactions, the researchers found a shortage of health care providers with shared lived experience or sign-language fluency, limiting access to culturally and linguistically appropriate care. They also identified gaps in accessible community-based services, health education and preventative care, leaving some people with few options outside hospitals and emergency departments.
The findings reinforce what Johnson and her colleagues had long suspected from their personal experiences and community connections. Rather than isolated incidents, the literature pointed to broader systemic issues embedded within health care systems; for example, many policies and practices continue to prioritize hearing and sighted experiences.
The researchers recommend improving communication through reliable interpreter services and accessible information formats, expanding health care training to include concepts such as ableism, audism and disability justice, and working directly with DDBBPS groups to co-design policies and practices.
They also argue that future research should look beyond hearing or vision loss to examine factors that shape health outcomes, such as housing, education, employment, income and access to care. Research, they say, should also include those most affected by what is being studied.
“Using a community-based and participatory approach, future research can commit to working with communities, including co-developing policies and other interventions alongside community leaders, experts and researchers,” says Johnson.
That approach, she says, brings the work back to where it began: recognizing that lived and community knowledge can reveal barriers and shape efforts to address them.