Before I even start this post, I need to preface it with the fact that I am writing this from the viewpoint of a parent of a child with a disability. I am not speaking for individuals with disabilities, and I cannot stress enough that my goal is NOT to speak for those with disabilities. I am coming at this from my own standpoint as a parent and what I have seen in my short, 9 years, as a parent.
Ok, now we can jump in.
While doing research on disability inclusion, I came across a concept that is so well known, but I feel like is highly under-regarded in the disability advocacy community - belonging.
I am going to define both "inclusion" and "belonging," and then discuss some of the differences and their importance.
Inclusion: the action or state of including or of being included within a group or structure. Or the practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those who have physical or intellectual disabilities and members of other minority groups.
(Oxford Dictionary)
I want to bring in a definition for belonging, that will help frame the rest of this article:
“The subjective perception or feeling one experiences when surrounded by family, friends, school, work environments, communities, cultural groups, and physical places" (-Ralph Allen K.A., Kern M.L., Rozek C.S., McInerney D.M., Slavich G.M.Braun).
Working off this definition, there are a few main differences that I feel like are important to point out:
Inclusion is being "welcomed," while belonging is feeling "valued." It is important to note (from my own personal view), that one cannot achieve a sense of belonging without being included - how can your views, opinions, and abilities be valued when you aren't even given a seat at the table? I believe that inclusion is the first step to feel like you "belong." Someone sitting on the side during recess because the playground is not wheelchair accessible is not going to feel the sense of belonging that the other kids have when talking about and recounting that experience. All they are going to feel is exclusion and isolation
Inclusion is something that is essentially bestowed unto others - someone else is extending the invite, someone else sending you the birthday invitation (and then yes, you can feel included, but that is only on the reliance of someone else's action). Belonging is an internal feeling, something that only each person can define for themselves. Yes, it is based on external factors as well (you cannot feel a sense of belonging if you do not get that birthday invitation), but it is a feeling that each person can defines for themselves, based on what experiences are meaningful to them. It is a feeling of meaning, kinship, and relatability.
“Belonging can be distinguished from participation because an individual feels like they belong when they derive meaning and purpose from being a part of and serving something bigger than oneself. The sense of connection and feeling valued and appreciated are critical components of belonging" (-Dr. Martin E.P. Seligman).
I believe that this quote should be the quintessential goal of disability inclusion. I know from our own personal experience, I can immediately tell when my son feels included versus when he feels like he belongs. When he is in a situation where he feels like he belongs, his whole personality shines through. He is his silly, goofy self, unabashed by the pressure to "fit in." He already belongs, and he knows that he is loved and valued for that. His opinions matter, his jokes make others laugh, and he is not dismissed because "he should be thankful he's even there in the first place."
Similarly, when we were looking for schools for first grade for my son, we were incredibly conflicted. On one hand, he was academically capable of going to a "regular" school. On the other hand, he wouldn't get the additional therapeutic supports he needed that he would get if he went to a school catered to children with disabilities. We decided to ask him what he preferred. In a heartbeat, his response was, "The school where other kids have disabilities also." We asked him why and he said, "I don't want to be the only one with CP."
This response was so telling (and so astute at such a young age) - he knew that he could be included in a more mainstream setting. But he also understood that no matter what, he would be different. No matter what level of inclusion there was, there would not be that sense of belonging he would have being in an environment with other kids who had similar disabilities. Yes, they would be accommodating. Yes, they would do their best to include him in all the school programming. But no one would understand him on that same, visceral level and to him, that was more important - not just to feel included, but to be somewhere he belonged.
And is this, at it's core, problematic? That no matter what level of inclusion the school was willing to promote, he felt like he could not truly belong? How do we get to the point where using a wheelchair or AAC device is at the same level of acceptance as eye glasses? How do we get to the point where disability is something that is so accepted, it's not even a "thing?"
Victoria Cepeda shared an incredibly insightful response when I brought this subject up on an Instagram post: "Speaking from the perspective of a mom with a son on the Autism Spectrum who is sociable, praised because of his academic achievements, and leadership skills, I can see that he is included as much as possible in all aspects. However, not all his peers value him as a friend enough to invite him along to after school activities that they do as a group. Hence, his sense of belonging is adrift.
Inclusion is a conscious act that more and more we are taught to do (the political correct way). Whereas belonging is felt (unconscious innate act). We either make others feel value or we don’t with heartfelt actions."
I am going to circle back to the beginning where I mentioned that I feel like this goal of belonging is not really mentioned so much when it comes to disability inclusion. Is it because fighting for disability inclusion is already such a fight? Is disability inclusion a stepping stone to get to a complete feeling of "belonging," but the fight for inclusion is so exhausting, we can't even bring ourselves to push it a bit more? Is this even a goal we are reaching for? We are working so hard for inclusion in the physical space, we need to remember to fight for the feeling of being included in the social-emotional space as well. And we need help to do that. This should not be a fight that is reliant solely on those with disabilities or their loved ones.
We need to push inclusion a step further - we need to push for belonging.
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