Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

Most people want to feel included. Having friendships and relationships give us more choices, and more chances to do the things we enjoy most. There has been research done about supporting people with intellectual and developmental disabilities (IDD) to have strong relationships, but many are still left out of studies because of their race, culture, sexual preference, or other identities they have. If they are part of communities that have historically been discriminated against, we say they are from minoritized groups.

There are two parts to feeling included. One is spending enough time in the community, and the other is feeling welcomed in the places where we go and having enough people who are true friends. Unfortunately, many people with IDD feel lonely. They take part in activities alone or with paid staff. They are often prevented from having sexual relationships, particularly if they are same-sex relationships.

The way we look at friendships and relationships is changing because of technology and the pandemic, and this brings new opportunities and risks. Many people, including those with IDD, are now making new friends who share their interests using social media. Many people are left out of things because of the combination of their disability and their race or culture, and we need to study this more. We see the need for research approaches that include people with IDD in deciding the most important questions to ask. We need to better understand how people with IDD think and feel about love, sex, and friendships. We also need to study how communities play a role in helping or hurting the ability of people with IDD, including those from minoritized races and cultures, to make social connections. Specifically, we need to learn how racism and other forms of discrimination play a role in social exclusion.

Disability research has largely ignored factors affecting social inclusion for people with intellectual and developmental disabilities (IDD) from minoritized racial, ethnic, cultural, and linguistic groups. The field of IDD as a whole, however, is beginning to recognize that social inclusion plays a critical role in the opportunities and choices individuals with IDD encounter during their lives and that a person’s social identities play a role in those opportunities. Importantly, then, we must better understand how intersecting identities, including disability identity, affect community participation, relationships, and, ultimately, belonging.

The general line of thinking about social inclusion is that it includes two core elements: community participation and relationships. Authors have different views about what social inclusion is, but these two elements have been fairly constant. If community participation and good relationships both happen, then belonging can occur. Social inclusion is often thought of in the context of individual, interpersonal, community, and societal factors that can help promote or hinder inclusion and belonging. Despite shared understanding of these elements, we still do not have wide agreement on a way to measure social inclusion, and this makes research difficult. In terms of community participation, people with IDD tend to participate in fewer community activities than people without IDD. Some experiments in faith communities and structured community events, such as unified sports, have seen some success, but have been difficult to scale or sustain. Peer-mediated interventions have likewise been successful, but hard to sustain over time. People with and without IDD have similar desires for friendship, love, and sexual relationships. Research has shown, however, that people with IDD continue to spend much of their free time in solitary activities and often express loneliness. Furthermore, opportunities to pursue intimate and sexual relationships are often limited for people with IDD, particularly those who wish to pursue same-sex relationships.

Social media and online communities are playing new and important roles in how we all relate to each other

The disability field has moved social inclusion toward a deeper sense of belonging, a “oneness,” or connection between a person with a disability and the people and communities important to them. This progress has likely been substantially hindered during the COVID-19 pandemic. Although we are all still working to understand the pandemic’s effects on our social lives, we are also coming to a greater realization that social inclusion and belonging cannot and should not look the same for everyone. Social position and social identities play roles in the choices and opportunities of people with disabilities, and research approaches are just now beginning to account for the roles of intersectionality, marginalization, and social determinants of belonging on outcomes. For instance, the IDD field has become more open to qualitative approaches to research in recent years. This enables us to use rigorous methods to understand what belonging looks like to people with IDD who have multiple marginalized social identities. Further, statistical advances such as artificial intelligence-based analysis (machine learning, propensity score matching, etc.) and use of geographic information system (GIS) mapping have the promise to transform how we understand social inclusion outcomes in the context of social and structural factors that shape the opportunities that people with IDD have to make friends and participate in their communities.

Social media and online communities are playing new and important roles in how we all relate to each other. People are forming relationships and socializing in new ways, with virtual relationships and socializing often the norm. IDD research has yet to adequately explore relationships and community participation in virtual spaces, and research on social inclusion and belonging will need to adapt to modern realities in order to remain relevant. These virtual spaces have the potential to remove some identity-based barriers and foster relationships based on shared values and interests, which could be of particular importance to people with IDD who hold multiple marginalized social identities. Of course, there is also potential for worsening the isolation that people experience if live events and community spaces decline. And discrimination in real life is often duplicated online. These diverse potential outcomes highlight precisely why further research on social inclusion for people with IDD across historically marginalized groups is warranted.

The road ahead

There are myriad other ways in which the understanding and measurement of social inclusion and belonging are changing as technology evolves, the pandemic subsides, and the global conversation around economic, racial, ethnic, and cultural inequities continues. As a field, we must learn how people with IDD from multiply marginalized groups experience inclusion.

Social inclusion and belonging are what make most of us feel whole. They make us feel like we have a place in our community, the comfort of family and friends, the right to pursue love and intimacy, and meaningful ways to enjoy our free time. As a community of IDD researchers, which includes people who experience IDD, we have much work to do in order to understand social inclusion, and to develop interventions that can help promote a sense of belonging for all people with IDD. The research suggestions above aim to do just that, with sharp focus on the experience of people with IDD who hold multiple marginalized social identities, as we aim for a future where we all feel we belong.