Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

It is important to include different cultures when planning and conducting disability research. Culture is the ideas, beliefs, and identities that we learn from our families and others, and it may apply to racial, ethnic, religious, political, linguistic, or other social groups. Researchers must pay attention to how they conduct research, who participates, how it is understood, and how results are shared.

Disability may become part of a person’s cultural identity as they become friends with others and discover beliefs and ideas they share in common. Most people have a few different cultural identities. They may put more emphasis on some, and try to hide others when taking part in research or at other times because they have been treated unfairly in the past.

Organizations have culture too. People with IDD and their families are part of the cultures of school districts, disability service systems, and health care systems. Each of these has its own language and rules. These systems must begin sharing information in languages that people understand. Disability research should focus on areas where people from minoritized racial and other groups are being treated unfairly. Researchers must create organizations with cultures that are inclusive of people with IDD and their families and help them feel like they belong. This begins with providing information using language that is understandable for them. They also should involve these groups in all parts of the research process, including coming up with research questions, gathering data, and sharing results with others.

There are multiple dimensions of culture, and the cultures of persons with the lived experience of intellectual and developmental disabilities (IDD) are an essential construct for disability research. Culture is the learned and shared knowledge that specific groups use to guide their behavior and interpret their experience of the world. It includes rituals, communication, courtesies, language, beliefs, practices, roles, manners of interacting, customs, expected behaviors, and much more. Many times, we talk about race and ethnicity, as we should, particularly in the United States, but culture is often overlooked and is very important. We teach children culture in the earliest stages after they are born. We teach them language, gender roles they may or may not accept as they get older, and how to relate to others in their environment. So, almost all of culture is learned. And if we think about culture in terms of research, there may be a lot to be unlearned within the IDD research community. Culture applies to racial, ethnic, religious, political, professional, and other social groups, and there are aspects of culture that are passed on from generation to generation. When we think about culture from a research context, we as researchers teach up-and-coming investigators to conduct research in a particular way. And yet, there are aspects of culture that are constantly changing. We need to pay great attention to this, not only in terms of how we conduct the research, but with whom we conduct research, how it is understood, and how it’s disseminated.

Another term we must consider is multiple cultural identities. There are people who may self-identify with perhaps one identity more than others. There may be individuals reluctant to share their cultural identities with researchers because they have been treated in a particular way in the past. And there are others who bring all of their identities to the table. I think of Andy Arias, one of our friends and colleagues who works with us at the National Center for Cultural Competence. Andy often says that he comes to the table with his queerness, his LatinX-ness, and his disability. Neither overshadows the other, neither is more important than the other. They all are part of who he is. In addition, we consider the term intersectionality and thank Kimberlé Crenshaw for her seminal work looking at intersectionality largely through the lens of women, specifically Black women. Her work addresses one's membership in multiple social groups, where members of these groups experience marginalization, oppression, and discrimination because of their identities. When we as researchers talk about intersectionality, we must acknowledge the harm, a critical and often overlooked factor. We have to think about the culture and cultures of the researchers involved and of the study population. And again, it is culture, not necessarily solely race or ethnicity, and it doesn’t just apply to people. There are the cultures of research institutions – what Dr. Anjali Forber-Pratt refers to as the total research enterprise.

In the middle of all this, we have to think about the multiple cultural identities of the person – child, youth, or adult. Say, for example, a youth is the only person within a family to experience IDD. While many aspects of culture will be shared, that one aspect will not be shared, and so we have to think about what it means to have a disability within the context of that family and in their community. This is all cultural context, and nowhere has this been more apparent than over the last couple of years because of the pandemic and its devastation on children and families and communities, particularly those that are historically marginalized.

Health, early childhood, mental health, and advocacy systems all are culturally based. We need to consider the systems that people have to rely on, and that they have multiple cultures of their own. So, if I'm a family member and my child needs support from health care, mental health care, the school system, disability system, I'm entering a different culture each and every time. The health system has its own language, has its own rules, has its own policy. The same is true in the education system and they may not even align with each other.

Understanding the depth and complexity in the multiple dimensions of culture is so very important in the conduct of research. Definitions of cultural and linguistic competence are found in a framework developed at Georgetown University in 1989. The concept of cultural competence came out of work by Terry Cross, Barbara Bazron, Karl Dennis, Mareasa Isaac, and Karl Dennis for the National Institute of Mental Health . My colleagues and I later created a framework and definition for linguistic competence. I, along with M. Clare Dunne and Suzanne Bronheim, introduced linguistic competence in a report published by The Commonwealth Fund .

Tawara Goode

Cultural competence requires that organizations have a clearly defined, congruent set of values and principles, and they can’t just state this on a website or in a brochure. They must demonstrate behaviors, attitudes, policies, structures, and practices that enable them to work effectively across cultures. And they must do this at every level of the organization.

To be culturally competent is to understand culture within the context of research or whatever filter you may be using, and it is different from cultural humility, though both are important. Many practitioners resonate with cultural humility because its primary focus is on the individual, while cultural competence looks at the capacity of an entire organization or system in addition to the individuals.

Also important to this discussion is language, because it is strongly linked to culture. And so, when we consider an organization’s capacity to perform research, we need to include and assess its ability to convey information in a manner that a broad cross section of people can understand. It must include people with limited English proficiency, those with disabilities, and those with unique communication needs, or a combination of those. It is not limited to an ability to translate a document. Linguistic competence requires organizations and providers to really address health literacy and mental health literacy.

Like cultural competence, linguistic competence has to be embedded in policy, in the structures and practices of an organization, and appropriate resources must be dedicated. Many languages are spoken in the United States, and people who speak languages other than English are truly underrepresented in research for a variety of reasons, including non-compliance with Title VI of the Civil Rights Act of 1964, which requires recipients of federal funds to make programs, services, and activities accessible to people with limited English proficiency.

This discussion also must address the use of the acronym DEI. We often treat diversity, equity, and inclusion as if they are one thing, rather than the distinctively different, yet related concepts and practices they are. The terms are not interchangeable. Diversity simply put is being composed of different qualities of elements. I like to emphasize cultural diversity because it’s about the differences among people. Equity is providing people with support and assistance depending on interests, needs, circumstances, and abilities. Inclusion means different things to different people in different circumstances. For the purposes of this discussion, consider the distinctively different definitions of inclusion from the human resources, LGBTQ+, and disability perspectives.

Does inclusion mean the same as belonging, and what does it mean in research? Is it possible that people with IDD and their families, across diverse racial, ethnic, cultural, linguistic, and other identity groups, are being included in research without actually having a sense belonging, either because they didn’t understand the terms or because things moved too fast? Beyond understanding, are they involved in all aspects of research design, implementation, and dissemination? We must challenge ourselves to ask, “Who are we excluding?”

It is critical for the research community to answer the question, “Disparities in what?”

Disparity, too, must be addressed in connection with DEI. There are disparities, or differences, in IDD at the system, institutional, community, and experiential levels. What does that mean in the conduct of research? It is critical for the research community to answer the question, “Disparities in what?” Is it availability, acceptability, accessibility, quality, or utilization? For many marginalized groups, supports and services may be available and accessible, but they aren’t acceptable because of culture.

We also have to redefine who can be called a researcher. Is it only someone with an advanced degree? We have to be cognizant of the power differentials between universities, research institutions, and communities.

In order to ensure that principles of cultural and linguistic competence are honored and adhered to in future research projects, consider these guidelines:

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.

As we think about the nature of the research we conduct and with whom, these are salient questions. Who is left out and who gets invited in? What does equity mean to people with IDD? We know that we have unjust systematic policies that unfairly disadvantage people with disabilities.

We have to change how we conduct research, not just the broad themes but also the specific topics and the methods. We have to make these changes not only in our organizations, but in ourselves. And we must collectively possess the political will, expertise, and resources to confront and address the disparities, disproportionality, and inequities we discover. We have to redefine how we think about research.