Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.
Amy Julia (00:06)
I’m Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We’ve teamed up here with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for your whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters, your child matters,
We need you among us. Today, I’m talking with Professor Eric Carter, Executive Director of the Baylor Center for Disability and Flourishing. Eric created a simple graphic called the 10 Dimensions of Belonging years ago. And today, he and I are talking about what families can do to help their communities become communities of belonging. We’re also gonna talk about the barriers to belonging and the benefits to everyone when we commit to becoming.
these spaces of belonging. One more thing before we dive into my conversation with Eric, we are collecting questions for an upcoming question and response episode. So just click the link in the show notes to record your question or send it in by email. We will respond to as many as we can. And now for my conversation with Eric Carter.
Eric, thank you so much for joining us here today.
Erik (01:32)
Yeah, great to see you, Amy Julia.
Amy Julia (01:34)
⁓ I wanted to have you on here because you have been researching families affected by disability and the ways in which they interact with their local communities, faith communities, but also wider communities for a lot of years now. The way I probably first knew of your work is through a diagram that you created called the 10 Dimensions of Belonging. Can you just tell us about that diagram, where it came from and how you came to create it?
Erik (02:02)
Sure, absolutely. I would say it came from listening really long to families like yours and like your listeners, trying to understand what mattered most to them so that in our work we could be responsive to helping call and equip communities to be about those sorts of things. And when we listened to families about what their hopes were for their communities, it was always something more than just being integrated or included. We heard these really deep desire to experience real belonging, real connection.
to others and a sense of mattering and being valued in communities that matter to them. So part of our research early on was trying to understand what does it really mean to be a community of belonging that weaves people with disabilities and their families in? So we took that question back to families. And as we listened to them, we continued to hear these themes emerge over and over, that to experience belonging was to be
present in the communities that mattered most to you, to be invited and welcomed, to be known deeply and known well, and then to be accepted in the midst of that. They talked about being supported and being heard, but mostly what we heard in all of those conversations was this desire to be befriended and needed and loved. So to really think about belonging not merely as a place, but as the relationships and interactions that you have that lead to a deep sense of connection
⁓ and being needed in the midst of others. So a lot of our work has been to understand what matters most to families and then to figure out how do we move communities more in those directions that so often struggle to be those kinds of places for families.
Amy Julia (03:43)
Yeah, and I want to talk in a minute about the struggle part that you just mentioned, but ⁓ you’ve already done this, but I thought it might be worth ⁓ you did it in this beautiful kind of narrative way. And we will certainly include a link in the show notes to the visual of the ⁓ 10 dimensions of belonging. Sure. But I’m just going to name them for a minute. ⁓ And you’ve already said it, but to be present, invited, welcomed, known, accepted, involved, supported.
heard, befriended, and needed. And that is something certainly our family wants. And I know the families who are represented as our listeners do too. Another thing that you’ve written, which I think goes along with some of what you’ve already said, is that belonging is not a special need. It is a universal need. Can you explain what you mean by that? Right.
Erik (04:31)
Well, we all long to belong. ⁓ And so as you hear that list of dimensions of belonging that come from the stories of families navigating disability, what you realize is those are the things that any family might want in a community, that we all have that deep longing for connection and presence and purpose and to be known fully and to be known rightly.
And so what we’re learning is that as communities learn to better welcome and be places of belonging for people with disabilities and their families, they’re actually learning to do that well for anyone in their midst. ⁓ And so in many ways, it’s just reminding people that we’re not doing something different or distinct always for people with disabilities and their families, but often it’s doing the kinds of things that would lead anyone to feel like they have that sense of belonging.
But those practices and those postures that we often take for granted don’t happen automatically for many families. So I think that it’s a really nice reminder for communities that you probably know how to help people experience that belonging. Do those same things for families experiencing disability, and then listen long enough to those families to know the other things you might add to round out that experience to really make sure that that experience of belonging happens for them.
in the ways that matter to them as well.
Amy Julia (05:53)
I read a story this morning about a playground that was being created at a school district that was, they had realized they had a number of students in wheelchairs and that the playground was inaccessible. And they finally said, you know, we’re going to actually ask these kids to be a part of recreating, like redesigning of the playground. They had all these ideas and they were actually literally too expensive for the school district. But the community got so excited about the prospect of actually having a playground that would serve these kids that they raised, you
tens of thousands of dollars, created the playground, it’s really cool. And one of the things that the designers who were being interviewed about the playground said was they actually made it a better playground for everyone. we could not have done this without listening. I mean, they were interviewing a 13-year-old kid with cerebral palsy who was integral in actually helping the design of this playground because the designers might have thought that this special X, Y, or Z equipment is what’s needed, whereas the kid was like, no.
we just need a way to get onto the hammock or whatever it was. I think on the one hand, language like special needs can be helpful in saying, okay, there might be some attention that you need to pay that’s a little bit different within this family. On the other hand, it can sometimes make us think that we have two different groups of kids or of adults. Some are special and some are not. ⁓ We’re to have to really go out of our way as a community, perhaps in a way that we
don’t feel like we can to actually welcome them. that was my next question for you is like, what are the barriers to belonging for families affected by disability? Because so many people experience a sense of a barrier to belonging. Where do you think that comes from?
Erik (07:37)
Yeah, I think so many communities have designed their programming and their spaces and the ways they gather without these families in mind, without an awareness of their presence and their gifts and their desire to be part of the community. I think one of the initial barriers is that so many communities just hadn’t thought about them at the outset. And so they’re often having to figure out how to retrofit or redo things or do things in different ways to widen that welcome.
So one of the barriers I think for them is just simply still, although it’s getting better, this lack of awareness of who is right in their midst, that one in three families in their community experiences disability. ⁓ So raising that awareness is one of the responses. Of course, there’s still ⁓ stigma and attitudinal barriers, low expectations that so many families encounter that we have to challenge by sharing.
new narratives and new stories about what disability means and the gifts of our family members that need to be received. So the attitudinal barriers still are a presence. But I think still so many communities just are now more more inclined to want to welcome well, but they just don’t know how. And many are fearful that they’ll get it wrong. And so how can families maybe ⁓ sort of ⁓ show communities that it can be done and have a posture of a willingness to try?
a willingness to be humble and maybe have to change course if you’re getting it wrong, but to move in that posture of a willingness to try to widen the welcome so that these families can be embraced. I love your story about the accessible playground because at the time I lived years ago in Wisconsin, one of the early communities was building one of those universally designed playgrounds. And the interview I read ⁓ with the
the individual who is designing it came from the reporter who said, why would you build a playground just for kids with disabilities? And the person’s response was beautiful. It’s only when you build a playground for kids with disabilities that you end up with a playground for everyone. And I think that sort of ⁓ the lack of imagination in our communities of thinking about how when we do this well for some, we’re doing this well for all is probably one of the primary barriers that families are rubbing up against is communities just haven’t thought about this.
and they struggle to think about it in more imaginative ways.
Amy Julia (10:01)
And what do you think? So on the one hand, this conversation really is one that could simply go out to designers of communities, people who are in leadership in communities, people not affected by disability who are thinking about how do we become places of welcome? And yet we’re also know that this podcast is going out to people who are kind of on the opposite side of that, like the families who perhaps have experienced exclusion. I was struck by the fact that ⁓
when we talk about the dimensions of belonging, we talk about presence as the kind of first step or first dimension. So for parents whose kids are not invited to be present in, say, a Sunday school classroom or even a, you know, typically developing kid school classroom, do you think there are steps that parents can take on behalf of their kids? You maybe have mentioned a little bit of this already, but let’s just underline it. Steps that we can take towards that.
belonging towards that presence without putting all the pressure on the families themselves.
Erik (11:00)
Right, yeah, it’s a real challenge. So much of our message is to communities because families so often have to be the impetus and sustainer of these kinds of changes. I ⁓ think being present and identifying the places in the community that are important to you and pursuing that presence is important. It calls communities to respond. I think there’s a place for knowing your kids really well and knowing their gifts and strengths and trying to share those.
with communities so that they can maybe begin to envision a place for your child or your family that they hadn’t. I think there’s a place for education and guidance ⁓ for an advocacy that ⁓ pushes communities to try some new things, but to figure out that right way of doing it winsomely. And then also sort of ⁓ knowing when you need to sort of recruit your community to join you in that kind of advocacy effort. I think sometimes there’s a ⁓
a place where ⁓ that advocacy becomes ⁓ too heavy for us alone and being part of a community that can join us in calling communities together to that can be really helpful. ⁓ I think being present is ⁓ that first step and then it leads to thinking about what steps could we, ⁓ what role could we play in perhaps promoting some greater awareness, offering some guidance, suggesting some supports.
And then being willing to connect communities to other expertise and resources there in their community that could guide them in enacting those things So it is a challenge of I don’t want to put the burden of belonging on the families. It’s on the communities but there is a role of Speaking up of advocacy of of modeling ⁓ That I think communities need to encounter to spur them along the way
Amy Julia (12:53)
Yeah, I’m thinking of ⁓ my friend Heather Avis talks about just ⁓ one that she’s a mother of two adopted children with Down syndrome and actually will also be on this podcast this season. And one of the things she has kind of, I think, decided to insist on is exactly that. Like the step she would say, I think in this conversation is simply be present. Like don’t essentially don’t allow your family to be excluded as your contribution towards belonging.
Hi guys, yep, we are also humans in this community, so we’re showing up. And again, not to be ⁓ jerks about that, but at the same time, just to say, no, we assume that we are a part of this because we’re a part of this. ⁓ There’s actually some power in simply showing up and being present. And hopefully that can lead to some of those other dimensions.
Erik (13:45)
And I think that is then that positions you to call communities to more. I think one of the messages for families is to not be satisfied that your child is just in that school or just in that congregation or just in that building, but to ask the kind of questions to understand whether they’re really participating fully and all the learning and life and relationships that are part of that community and to call communities to something more than just being there, but to actually have a presence in that community.
And then, and that helps guide you on where you have to advocate, where you have to recruit support, where you have to bring in reinforcements to help move communities in those directions.
Amy Julia (14:24)
Have you seen examples of ⁓ this happening? And I don’t mean, know, it’s all 10 dimensions are fully realized in this place, but just that movement from a place that might be more of a place of exclusion to more of a place of belonging.
Erik (14:38)
Yeah, I think we’re seeing more and more examples in all kinds of contexts. A lot of our work is within faith communities. So we’re loving seeing congregations that are moving from this way of thinking about care for or ministry to ⁓ families impacted by disability, but really saying, can’t imagine us gathering without these families because they enrich ⁓ our community. They share their gifts. ⁓ I just couldn’t imagine another way of being.
We’re seeing more and more schools that have realized that actually as we weave kids more fully into the classroom, we’re learning how to teach better, we’re learning how to learn better, we’re forging relationships among kids across different experiences so that belonging is beginning to abound more and more in our schools. And I can think of examples of workplaces as well that are beginning to talk about actually, we thought about hiring this individual as something that might be good for them, but it’s changing our culture, it’s changing
how we think about our mission, it’s actually leading to more, us being able to do our work better. So there are glimpses of this in communities, ⁓ but still they feel so often that they’re the exception or the anecdote rather than the everyday experience. But interestingly, we see it so clearly, belonging can be experienced in so many places, but in the core of families, that’s where belonging begins.
I love the beautiful examples we see there among sync within families and then as families come together and experience a belonging and then join and invite communities to come alongside that. So belonging is all in our midst. I think many of our programs and services struggle to embody that. But there’s good glimpses of hope. And even here at a community like ours at Baylor,
we’re beginning to see how with some small changes as we widen that welcome and new voices and faces are part of this community, we’re learning to do belonging well together. And the community is talking about how belonging then is it just, as you said, just for those individuals who’ve been excluded, but actually a thing that we all need desperately and we all learn to do together.
Amy Julia (16:50)
I love that. And I’m curious, again, we’ve kind of touched on this a little bit, but I feel like for many communities, whether it’s a school or a faith community or a civic organization or a camp, the thought of ⁓ having a space of belonging for people with disabilities often feels like it would take too much, like it would cost too much. It would take too much restructuring, whether that’s like architecturally
⁓ or programmatically and you’ve spoken out to this a little bit, but I’m just curious, like, what do you think it costs maybe to make those types of changes and what does it cost not to?
Erik (17:30)
Yeah. I mean, think about the cost associated with each of those 10 dimensions of belonging. What does it cost to invite, to welcome, to come to know someone, to accept them, to befriend, to need, to love? ⁓ So at one level, belonging doesn’t have a cost per se. It doesn’t come through programs. It’s not about services.
But there are sometimes changes we have to make to our spaces, to our curriculum, to the way we gather that enable people to be present in those spaces. So I think we so often think about what’s the cost because we think about retrofitting buildings or architectural barriers, and those can matter, and they can matter immensely, but they usually don’t matter most. And they’re usually the things that once were in relationship, then
we’re very quickly willing to bear the cost to maintain those relationships. But when we’re not, it always feels like a cost for some abstract thing that we’ve never quite experienced and it’s always for someone else. When we figure out how to begin with being befriended and being needed and loved, we’ll almost do anything for those we love. And I think that’s where I want to see communities ⁓ move the question of cost to the back end.
rather that being what you lead with.
Amy Julia (18:56)
I really appreciate that. And I love that idea that both relationships, once we have relationships, we will pay the cost for them. And also that the, feels like almost like being present is the, ⁓ it’s on the one hand, the first thing, and it’s also the thing that maybe doesn’t need to be so much of a barrier.
Erik (19:16)
Yeah. I think there’s another way to think about costs too, besides the usual things that come to mind, but what does a cup of coffee cost? Or a tank of gas to give someone a ride, going to the movie together, watching the game, catching a meal. All of those are costs that are things we invest in time spent together that are relational kinds of things.
I think that’s where the money is really best spent, is in a meal, in a shared activity, in a ride together. ⁓ Those are the things that lead to belonging, ⁓ and it’s less about the other remaking our buildings and spaces.
Amy Julia (20:00)
I’d love to kind of as a final question before I ask you a bonus question, but as a final question for this part of our conversation, I’m ⁓ I’m thinking about just trying to summarize again. This podcast is called Take the Next Step. If you’re a family listening to this, like what are some of the things we’ve already said? And if you want to add to it, we can. But that would be like just simple steps we could take towards a greater experience of belonging.
for families affected by disability in whatever community we’re talking about. I’ve definitely heard you say, ⁓ be present, like that’s one. And to the degree that I guess it’s possible, be in relationship. I’ve also heard you say, ⁓ gather with one other family that’s been affected by disability, like because you’ll both know how to do that for each other, perhaps more than others will for you, but things can grow from there. Are there things I’m missing as far as just like simple steps?
Erik (20:56)
Well, as you said, think about the kinds of life and experience you want for your family and your kids and pursue presence in those kinds of places. I think that’s part of it. But I think the other is, as we’re calling communities to be about this, we’re also building belonging. And so you’ve said this well, reach out to one other person, one at a time, develop that relationship, forge that friendship, and then grow that.
And sometimes we find families run into so many barriers in the midst of their community that they begin to create community for themselves and draw in other families, other individuals one at a time. And then you’ve got a company of people with you that’s better positioned to tip those communities in the directions that they’re supposed to be tipped into. I do think it’s thinking about ⁓ nurturing belonging in your family and then growing that sense of belonging with other families, other couples, other individuals.
one at a time.
Amy Julia (21:52)
I love that. Thank you. ⁓ And now my bonus question for you. I know that the center where you work at Baylor has recently undergone a name change. And I just wanted to ask you to ⁓ tell us about that name change, because I think where you’ve ended up might speak to this conversation ⁓ as well.
Erik (22:10)
Our center is now known as the Baylor Center for Disability and Flourishing. And it certainly comes from our core commitment to make sure that individuals with disabilities and their families can flourish in all areas of their life. But it actually has a double meaning. We actually believe when we do this work well, when we open up communities, that ⁓ entire communities can flourish when the gifts and presence and friendship and faith of people with disabilities and their families are finally received.
So our vision of flourishing is actually creating a world where people with and without disabilities can live and learn and work and worship together as one, a community where everyone belongs. So I think that name captures what we’re all aiming towards and hoping for ourselves, for other families impacted by disability, but honestly, for any member of our community who’s felt excluded.
Amy Julia (23:00)
I think so many ⁓ people with disabilities, families affected by disability have an experience of ⁓ being told that their contributions don’t matter as opposed to they are crucial to who we all are. We really need you among us. And I’ve heard you say before that we know you belong when a group says, we aren’t us without you.
⁓ And I love that as a little shorthand for a flourishing community where we are not us without you. We need you. These relationships matter. And these interability relationships are actually kind of constitutive of who we are. So that’s really beautiful. And thank you for the work that you do and for sharing some of that with us here today.
Erik (23:44)
Thank you, Amy Julia. Appreciate it.
Amy Julia (23:50)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. I will mention once again that we are gathering your questions for an upcoming question and response episode. Click the link in the show notes. You can record a question there or send it by email.
Either way, we would love to hear what’s on your mind. I’m also excited to announce the conversations that we have in store for you. Next week, I will talk with Lucky Q co-founder Heather Avis about Delight. Then I will also be talking with co-founder of 99 Balloons, Matt Mooney. He is going to join me for the question and response episode so that you’ve got his perspective as well as mine for whatever questions you might have.
We are still in the very early days of this podcast, so we need your help. Please follow this show, rate it, review it, and share this conversation with others. Who is in your life who would benefit from hearing what we talked about here today? Please pass it their way. As always, whether it’s for our question and response episode or just in general, you can reach out to me either by tapping the send us a text link at the end of the show notes.
Or through email, I’m amyjuliabeckerwriter at gmail.com. I want to thank Jake Hansen for editing the podcast and Amber Beery, my assistant, for doing everything else to make sure it happens. I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future for your family.