Self-Advocacy Is about Belonging

Earlier this year, I attended the Belonging Forum’s global symposium. It was a three-day conference that brought together people from all over the world who are working on ways to combat social isolation and to innovate solutions that will help to make marginalized groups and individuals feel more closely connected with society. I had the opportunity to speak about research that I have done and am doing at HPOD on barriers to inclusion faced by persons with intellectual disabilities, who are too often and too easily sidelined.

For example, in one study my colleagues and I interviewed group home residents with intellectual disabilities in Massachusetts about their experiences during the COVID-19 pandemic. During the darkest, most isolating days of the pandemic, having a built-in "bubble" that allowed for easy social interaction might have seemed to many like a luxury. Instead, these individuals seemed to experience more prolonged periods of social isolation than others. Their group homes were frequently under "lockdown," even when their surrounding communities were not, because housemates or staff tested positive or because their service provider was experiencing staffing shortages. Especially given the greater barriers to accessing the community that our study participants described, we were surprised to learn that their group homes' staff did little to try to foster a sense of community within their homes.

In another study on the experiences of adults with intellectual disabilities with "person-centered service planning" processes, we've detected similar themes. In the United States, individuals who receive community support services from their states have service planning "teams" who help them decide what services they want and how they prefer to receive them. In addition to the person receiving services, these teams generally include a coordinator employed by a state agency, service provider agency staff, and family members. Although the term "person-centered" implies that individual service recipients should be in the driver's seat, many of the people we interviewed seemed just to be along for the ride. In reality, other team members can exercise a lot of control over what services make it into an individual's "person-centered" service plan, sometimes without the individual even realizing it.

In both studies, it seemed like formal service delivery systems were falling short of helping adults with intellectual disabilities realize the promise of "community living" protected by the Americans with Disabilities Act (ADA). The ADA recognizes that “society has tended to isolate and segregate individuals with disabilities.” That's why Title II of the ADA requires that persons with disabilities receive services "in the most integrated setting," which means a setting that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.” But although the ADA has enshrined legal rights that have helped adults with intellectual disabilities move out of institutions and into their communities, these rights have been less effective at ensuring that adults with intellectual disabilities are respected, accepted, and valued by the communities they live in. In other words, ensuring that they belong there, too.

What kinds of rights do adults with intellectual disabilities need to help them belong in the communities where they live? In her book On Belonging, Kim Samuel argues, “It is long past time that we as a global community take th[e] concept [of belonging] a step further and recognize that all people have an inalienable, universal Right to Belong.” Although there isn't an international human rights treaty that specifically recognizes a "right to belong" in so many words, she rightly notes that you can see the “undercurrent of belonging” running through many of the human rights recognized by international law. Among them is the right to "living independently and being included in the community" enshrined in Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD).  

CRPD Article 19 says that the human right of all persons with disabilities to live in the community means we must have “choices equal to others.” It also says that we must have access to “a range of ... support services” that we may need to live in the community. And it says that services and programs available for persons without disabilities must be changed to be “responsive” to our needs. Although Article 19 in some ways may seem like a "new" right innovated by the CRPD, the UN committee responsible for monitoring the CRPD's implementation points out that it "is deeply rooted within international human rights law," from the Universal Declaration of Human Rights to several core UN human rights treaties.

Undoubtedly, the human right to live independently and be included in the community, or "community living," as is more commonly said in the United States, is fundamental. Without it, I think it would be hard for a person to feel respected for their inherent dignity as a human being. For me, the services I received earlier in my life were nothing short of a "passport to the world." To quote the recently deceased Alice Wong, the Medicaid program that funded my services was much “more than a health care program”: for me, it was “a life-giving program.”

But I don’t think the right to community living promises persons with disabilities as much as a "right to belong" could. For example, CRPD Article 19 talks about access, participation, and “being in.” I can access, participate, or be in countless activities or spaces without feeling that I belong there. To me, belonging is a bigger idea. Belonging is about more than “being in” or “participating in.” Belonging means being seen and valued for who you are and all you do to make the community you're part of better.

I think it’s fair to say that I live independently and I am included in my community. But do I always feel that I belong to my local community? I’m not always so sure. Just because I can access something or be in a place doesn’t make me feel respected, accepted, and valued by the people around me. For example, a local business or store in my neighborhood might call me a “valued” customer. But they don’t necessarily value me as a human. They don’t necessarily recognize everything that I bring to the table--aside from my business. They don’t necessarily see how I make the community I live in better. 

I wonder about how much my peers who live in group homes today feel that they belong to the broader communities they live within. Do they feel respected, accepted, and valued by the people who live around them? Have they ever been invited over for dinner by a neighbor? Do they even know their neighbors’ names? Even though advocates have in many cases succeeded in overcoming “NIMBY” attitudes that once prevented group homes from being built in certain communities, I think these attitudes persist and create barriers to belonging. Physically living within a community is one thing; but it's another to be respected, accepted, and valued by it.

So then, where do I feel that I belong? Where do I feel respected, accepted, and valued? Without a doubt, I feel I belong in the self-advocacy movement. I am skilled at helping people with disabilities discover their talents and speak up for themselves. Other people in the movement recognize my skills and talents and they value me for offering those to my peers. They respect me for my contributions to the movement. That, to me, is what belonging is all about.   

As self-advocates, we often focus on demanding things that the ADA and other laws clearly protect, such as equal access and integration. All these things are important, to be sure! Still, I believe that self-advocacy is about something deeper. Self-advocates want people with disabilities not just to be allowed into places but to belong to our communities. We should feel respected and accepted by other community members. We should also feel valued for all the ways we make our communities better. If we felt a greater sense of belonging, we would likely find that we also enjoyed the kinds of access, and integration that we have long advocated for. 

As a movement, I think we could talk more about this deeper aim. Kim Samuel’s idea of a “right to belong” might be a good way of making it clear that self-advocates expect more than rights, access, and integration. We want to belong. Whether you call belonging a right, or just an idea, we deserve it! 

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