40 Big Ideas

Summary

It is important to understand that disability is only one aspect of someone’s life. They have different racial, ethnic, cultural, economic, and other backgrounds. We need to study differences in how different groups of people can get disability services. We need to look at whether services are truly accessible, effective, and something that these groups want.

The idea of cultural and linguistic competence evolved over time to include the disability context, which calls attention to the disparities that further marginalize people with disabilities from different racial, ethnic, age, and other groups.

Begun in the 1980s as a way for healthcare providers to better care for immigrant populations, the idea is used today as a best-practice method for making services equitable for everyone.

“Cultural competence requires that organizations have a clearly defined, congruent set of values and principles…[and] they must demonstrate behaviors, attitudes, policies, structures, and practices that enable them to work effectively across cultures,” Tawara Goode, director of the Georgetown University National Center on Cultural Competence, wrote in a 2022 Impact issue on engaging communities underrepresented in disability research. The issue highlighted a convening by the Institute on Community Integration of researchers, people from historically marginalized groups with lived disability experience, and others to address intersectional disparities in disability, particularly intellectual and other developmental disabilities (IDD).

“Health, early childhood, mental health, and advocacy systems all are culturally based,” Goode wrote. “There are disparities in IDD at the system, institutional, community, and experiential levels. It is critical for the research community to answer the question, ‘Disparities in what?’ Is it availability, acceptability, accessibility, quality, or utilization?”

Goode suggested the following guidelines for ensuring cultural and linguistic competence in future disability research:

1. Recognize that as humans, we are all cultural beings.
2. Accept that each of us has multiple cultural identities.
3. Understand that having a disability is only one aspect of a person’s identity.
4. Respect that intersectionality is the day-to-day reality of life for a person with IDD and their family, and recognize the historical experiences of people with IDD across all racial, ethnic, and cultural groups.
5. Act with the understanding that language and culture are inextricably linked.
6. Ensure that people with IDD are actively and meaningfully involved in all aspects of research.

“When we consider an organization’s capacity to perform research, we need to … assess its ability to convey information in a manner that a broad cross section of people can understand,” she wrote. “It must include people with limited English proficiency, those with disabilities, and those with unique communication needs. It is not limited to the ability to translate a document. Are people with disabilities involved in all aspects of research design, implementation, and dissemination? We must challenge ourselves to ask, ‘Who are we excluding?’”