Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

Clear language summary

Every person longs to belong, including the more than 7 million U.S. adults with intellectual and developmental disabilities (IDD). They need close relationships and a valued place in their community. Unfortunately, the assurance of belonging is elusive for too many adults with IDD. As emphasized throughout this issue of Impact, loneliness and isolation may be more common than connectedness and friendship. This raises essential questions for every community. What would it take to change this landscape? How can schools, workplaces, congregations, and neighborhoods embrace people with IDD more fully? Our ongoing work on belonging—drawn from conversations with hundreds of people with IDD and their families—offers some insight. People are more likely to experience belonging when they are present, invited, welcomed, known, accepted, supported, heard, befriended, needed, and loved. These dimensions offer both a vision and a roadmap for communities seeking to become places of belonging.

We thrive most in community. This simple truth captures the conclusions of social scientists, health researchers, educators, theologians, and so many others who study human flourishing. Every person longs to belong. The same is true for the more than 7 million adults with intellectual and developmental disabilities (IDD) in the United States. Their need for long-haul relationships and a valued place within a caring community is neither different nor diminished. In fact, true flourishing often takes root where belonging abounds.

Unfortunately, the assurance of belonging is elusive for too many adults with IDD. As emphasized throughout this issue of Impact, loneliness and isolation may be more common than connectedness and friendship. This raises essential questions for every community. What would it take to change this landscape? How can schools, workplaces, congregations, and neighborhoods widen their welcome in ways that embrace people with IDD fully?

Our ongoing work on belonging—drawn from conversations with hundreds of people with IDD and their families—offers some insight. This work is summarized in a 2021 article in the book Belonging and Resilience in Individuals with Intellectual and Developmental Disabilities: Community and Family Engagement (doi.org/10.1007/978-3-030-81277-5_2).

When we asked people what fosters true belonging, their responses converged around ten recurring themes. People are more likely to experience belonging when they are present, invited, welcomed, known, accepted, supported, heard, befriended, needed, and loved (see Figure 1). These dimensions offer both a vision and a roadmap for communities seeking to become places of belonging.

Dimensions of Belonging

Present

Belonging is often built upon the foundation of common experiences and shared lives. When people with IDD participate in the same classrooms, clubs, workplaces, and worship spaces as everyone else, their opportunities for meeting new peers and forging new friendships expands exponentially. When they are excluded from these ordinary experiences, however, it narrows who they know (and who knows them back). Communities of belonging are intentional about reflecting on and removing barriers to the full participation of people with disabilities.

Invited

Invitations are the needed remedy to isolation. When members of a community notice the absence of people with IDD and actively pursue their presence, it sends a powerful message about just how much they really do matter. The easy act of inviting someone to join you for a fun event or social gathering reminds people that their company is deeply desired. Sadly, such invitations can be all too rare for many adults with IDD. Communities of belonging are active in reaching out to those who are rarely reached out to.

Welcomed

Impressions matter. How people are greeted and treated when they arrive directly impacts whether they will later want to return. The hospitality people with IDD encounter in their schools, workplaces, religious communities, and other programs shapes whether people truly feel welcomed. Simple gestures can assure someone you are glad they came—a kind greeting, a sincere smile, a thoughtful question, a hearty handshake, a warm introduction, an offer of support, an invitation to lunch, or a follow-up phone call. Too often, people feel reluctant to strike up a conversation when they are uncertain about what to do or say. Communities of belonging strive to welcome well and widely.

Known

Adults with IDD are often known through narrow and limiting lenses. A culture that valorizes certain abilities and forms of accomplishment often struggles to see how people with disabilities can enrich a community. Indeed, most people are still prone to overlook the strengths, gifts, passion, and positive qualities these indispensable members have ready to share. Communities of belonging take time to learn about the individual stories, struggles, and strengths of every member.

Accepted

Attitudes toward people with disabilities have long been uneven. Although there is growing awareness and acceptance of disability in many corners of the country, adults with IDD often wonder how they will be received by others in a community. Narrow expectations for behavior and participation can often lead to stares, stigma, or separation. When people are instead genuinely welcomed and embraced for who they are, they are more likely to experience belonging. Communities of belonging are wholehearted in their acceptance of people who have felt or been excluded.

Supported

People with IDD will need ongoing assistance to participate meaningfully in the life of their communities. Becoming fluent in those support needs is one way that communities can promote full participation. This might involve anticipating whether someone will need information, guidance, encouragement, adaptations, resources, technology, transportation, or other forms of individualized support. Providing needed support is a tangible way to assure someone that their presence matters. Communities of belonging are generous and proactive in their support of every person.

Heard

It is empowering to know that others are eager to hear what you think. People with IDD have important—and often unique—perspectives to share. Yet, their insights and experiences are not often sought out or considered. Asking their thoughts, inviting their input, respecting their opinions, encouraging their contributions, and supporting their leadership—each are ways of amplifying the voices of people with disabilities. Communities of belonging invest considerable time listening to and honoring the insights of disabled members.

Befriended

Relationships are core to belonging. Friendships can be a source of great joy, meaning, support, and well-being; their absence can be a source of great loneliness, disappointment, and languishing. For many adults with IDD, supportive relationships outside of family members and direct support personnel can be rare or fleeting. Supporting regular involvement in inclusive activities with others who share similar interests or backgrounds is one way of fostering friendships. Communities of belonging foster reciprocal relationships among people with and without disabilities.

Needed

Like anyone else, people with IDD have important contributions to make. Indeed, their talents, strengths, character, interests, values, aspirations, and abilities can enrich their relationships and communities. Coming to know someone well involves seeking out the constellation of gifts they have to share. Belonging is experienced when those gifts are then received by others. Communities of belonging provide meaningful opportunities for people with disabilities to lead, serve, and support others in the community.

Loved

We thrive most in the midst of people who love us back. Love should be abundant in the lives of adults with IDD. It should also abound in schools, workplaces, congregations, and communities. Love is the thread that connects all of the other dimensions of belonging. It is what leads us to invite, welcome, accept, know, support, hear, befriend, and need one another. Communities of belonging love generously and unconditionally.

Moving Forward

Belonging should abound for adults with IDD. Every person should have the assurance that they matter within a community that matters to them. Communities striving to become places of belonging must reflect regularly on their practices and postures, remove barriers to full participation, equip their members and leaders, prioritize relationships, support and proactively attend to the ten areas identified above.