In the Latin America and Caribbean (LAC) region, hearing loss affects millions, yet the unique challenges faced by Deaf communities remain largely unexamined in public health discourse. Deaf people, especially those who use sign language as their primary mode of communication, often experience systemic exclusion from health care systems that are not designed with their linguistic and cultural needs in mind. Less research has been designed to capture the lived experiences of this population, especially their health care experiences. A collaborative study in the Dominican Republic seeks to fill this gap. Through in-depth interviews with 102 Deaf Dominicans across urban and rural settings, the study uncovers the structural barriers and lived realities that shape their access to health care.

 What inspired the study?  

 This research was inspired by the intersection of the global equity and deaf justice movements, with Deaf scientists and advocates leading efforts to improve health access and literacy – and to address language deprivation in Deaf people -  in the Dominican Republic. Central to this work was a commitment to community-based participatory research (CBPR) principles, which prioritized authentic partnership with the Deaf Dominican community. Several intersecting pre-existing relationships formed this unique partnership, including academic and advocacy organizations in the Dominican Republic and USA. The research team incorporated deep collaborative relationships with the Asociación Nacional de Sordos de la República Dominicana (ANSORDO), the country's national Deaf association, recognizing them as essential partners rather than mere gatekeepers. Through extensive exchange and dialogue that prioritized LSRD (Lengua de Señas Dominicana/Dominican Sign Language) and ASL (American Sign Language) as the primary languages for this project (supplemented by written Spanish and English), the researchers embraced a praxis-based methodology that valued learning from community members' lived experiences and expertise (Smith 2021). This approach ensured that research questions, methods, and interpretations reflected the priorities and perspectives of Deaf Dominicans themselves, creating a reciprocal learning environment where academic knowledge and community wisdom informed each other. For these Deaf researchers, documenting the health experiences of their community was both a scientific and community-driven imperative rooted in transforming systemic exclusion into inclusion (McKee et al., 2015).

 Why is it important?  

Deaf individuals are often excluded from public health studies, especially qualitative studies that rely heavily on spoken communication, leaving them underrepresented in public health literature. While in this study, the research team partnered closely with the local Deaf community, ensuring that Deaf Dominicans were not just subjects of the study but also co-creators of its direction and meaning. Interviews were conducted in Dominican Sign Language (LSRD) by Deaf researchers and interpreters, allowing participants to express themselves fully and authentically. This linguistic accessibility was crucial for capturing nuanced experiences and building trust in health services research.

By grounding the study in Deaf cultural and linguistic norms, the research design itself became a form of advocacy—challenging traditional models that often exclude or misrepresent Deaf perspectives.

 Did this study show anything unexpected?  

This study marks a critical step toward recognizing and addressing the health inequities faced by Deaf communities. One important finding from the study was the extent to which Deaf individuals relied on gestures rather than formal sign language in medical settings. Despite being fluent in LSRD, many participants reported defaulting to improvised gestures or lipreading during health consultations. This wasn’t due to preference but necessity as most health professionals lacked any knowledge of LSRD, and interpreters were virtually nonexistent. The study also revealed the emotional distress this population encounters when they seek health care. Participants described feelings of fear, shame, and helplessness—not just due to their health conditions, but because they couldn’t understand or advocate for themselves. Some even avoided seeking care altogether, knowing they would face confusion and exclusion.

What is the wider significance of the study findings? 

Importantly, the study reframes Deafness not as a disability to be “fixed,” but as a linguistic and cultural identity that deserves respect and accommodation. It highlights how structural audism, the privileging of hearing and spoken language, manifests in health care settings, and how language deprivation can have lifelong consequences for health literacy and autonomy.

The findings have broad implications for global health equity. They challenge policymakers, educators, and health professionals to rethink accessibility—not just in terms of physical infrastructure, but in terms of communication, representation, and cultural competence. By centering Deaf voices, the study advocates for inclusive health systems that serve all communities, not just the majority.

References:

Smith, L. T. (2021). Decolonizing methodologies: Research and indigenous peoples. Bloomsbury Publishing; 2021 Jun 3.

 McKee, M., Paasche-Orlow, M., Winters, P., Fiscella, K., Zazove, P., Sen, A., & Pearson, T. (2015). Assessing health literacy in Deaf American Sign Language users. Journal of Health Communication, 20(Suppl 2), 92–100. https://doi.org/10.1080/10810730.2015.1066468