The Loneliness Issue

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Janent Stewart

Pervasive social isolation and loneliness threatens all of us. And just having a disability, particularly an intellectual and or developmental disability, is a critical risk factor. Worse, people with disabilities often live in financial distress, lack appropriate support staff, or have other indicators of loneliness. And these are associated with costly physical and mental health outcomes. This issue explores the latest research on loneliness in people with intellectual, developmental or other disabilities.

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Janent Stewart

Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine that bridges the research to practice gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.

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Janent Stewart

My guests today are Zach Rossetti, associate professor, Boston University. Wheelock College of Education and Human Development, Boston, Massachusetts. Shelby Richardi a self-advocate and conference presenter from Massachusetts, has worked with Zach on a variety of different projects that really touch on our topic today. And Sara Hall here at the Institute on Community Integration, is a research associate who has studied broadly.

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Janent Stewart

Issues of belonging in different age groups, has done a lot of work in the field of siblings with disabilities, and we're just so thrilled to have each of you join us today to talk about this issue and the experiences we had putting out putting it all together. Sara, let me start with you and and, Zach, you know, you both wrote really our top story.

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Janent Stewart

Our lead story. And you worked in this field for so long, you've done this topic quite a bit as you were putting your article together. You know, can you talk a little bit about kind of what you were trying to get across and kind of how it came together? If anything surprised you?

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Shelby Richardi

Well, I think one thing that was difficult for me at first is that I like to focus on the positive. And so I kept thinking social inclusion and belonging. But we really need to dive into the nitty gritty of how do people actually experience it. And, you know, it was interesting that, you know, people with disabilities, they experienced more long lasting, loneliness and and also the things that, you know, they, they can't get out of it themselves sometimes.

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Shelby Richardi

And so it's just that little facilitation that other people can support them with, like helping people to do more activities to meet more people, helping facilitate conversations and friendships and just like that, intentional planning. That's the biggest thing that came out of, you know, how can we support people as well, intentionally find out what they want, what they're missing and really look into?

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Shelby Richardi

Okay, how can I help with that?

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Janent Stewart

That's great. Zach. How about you?

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Zach Rossetti

Right. Yeah, I it felt, difficult at first to think about this issue and think about that article. Because the topic, does have, you know, these negative overtones. And, you know, we do like to focus on school and community inclusion and social belonging. And the fact is, despite many wonderful things happening and, and great efforts, there is lots of social isolation in, in and loneliness and in schools and communities.

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Zach Rossetti

And I keep thinking, again, despite, you know, lots of great things happening. Like, we there are roots of, I think some of the dynamics and problems leading to loneliness just tied to ableism in our country and having a separate special education system and that lots of people are fighting, you know, for for more inclusion and having much of society still, inaccessible and in different ways and trying to fit in, and, you know, just kind of I've been thinking a lot on the broader scale of, you know, programs or organizations much of society, like I said, being built by and for people without disabilities, and loneliness, as Sarah said,

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Zach Rossetti

is really important to think about. Actually quite scary, the vulnerability that people with intellectual and or developmental disabilities, have or, loneliness, the research points to that. And, I thought I knew it pretty well. But writing our article, there's a lot just having a disability, as you said, Janet, is a huge risk factor.

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Zach Rossetti

And then is especially as people age. There are lots of risk factors related to, experiences, that, that people with intellectual and developmental disabilities have in adulthood that, you know, worsen and elongate, experiences of loneliness.

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Janent Stewart

Yeah. So I really, you know, I really identify with what you said about, you know, just the, kind of wanting to see the positive side. You know, you both kind of mentioned that you. And it's so it's hard to kind of kind of gravitate to that negative. And that's really human nature, right? If you ask anyone disabilities or know disabilities, you know, are you lonely?

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Janent Stewart

Everyone denies it. Right. And and we had we had a lot of people, with disabilities who we approached to write stories about loneliness, completely denying that they were ever lonely. And that's I think that's that's just not something in people with disabilities that's in all of us. We kind of want to just deny that it's there, don't we?

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Janent Stewart

And, and I found it really fascinating that some of our authors who were sharing personal stories just had different perceptions about it. They say if they did sort of, come to grips with that and write about it a little, we have an author, Patty Menzel, who started her article off, with the the just kind of growing up.

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Janent Stewart

She never really got it. She had autism, and she, she never could really see outside of her cells. So she didn't really understand what the whole idea of. We are doing something or we are feeling something. So that thought that was fascinating. And we'll talk about that in a, in a second. But then there was, Anne, who kind of grew up, over the last several years, really missing a brother who had moved away.

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Janent Stewart

And she said it, she said loneliness to her, was a hollow feeling. She felt hollow. And I thought that was really telling. And, Brian Boice, said his brother, even when they're together, his brother constantly says, I miss you, even when they're together. So that was really, really cool. And other authors said, you know, it feels like boredom or grief, so, so it's really, you know, incredible.

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Janent Stewart

The range of experiences that people have with it. Because as we say in these articles, it is subjective, you know, isolation you can kind of work on. You can physically put people together, you can create, you know, all kinds of opportunities. But that that feeling of loneliness is something that's pretty subjective and, and, kind of dependent on a lot of different surroundings.

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Janent Stewart

And that was a that's an issue that Shelby got into. In your article, will you, will you share with us the a little bit about the article that you wrote for our issue? Shelby.

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Shelby Richardi

So the article that I wrote was, have research, was about the impact and loneliness with technology, like social media, texting, and, you know, like the reason why, like, you know, we wrote it was because, was using so much technology. It causes so much isolation and it can even affect, like some friendships even, just knowing that, like, we can't see each other, like, face to face, and the human element is missing, you know, missing, like, you know, in technology.

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Shelby Richardi

Yeah. Basically technology. You have to be able to interact with people, not through computer. What I'm concerned about is, for, let's say, a person with disability wants to be friends with a person without a disability, on social media. And the person that doesn't have the disability, is not being truly honest. And takes advantage of, like, him or her.

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Shelby Richardi

It might and might possibly say, you know, things that might be hurtful or like cyberbullying. You know, and and if that happens, it might create a lot of loneliness. And, you know, it's like, you know, along with, like, you know, like sadness and depression, I've experienced it. And that was really hard. It was really, really hard.

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Shelby Richardi

At one point. It's honestly so much better socializing, face to face, because we can learn about each other more and it's more like, meaningful. It's more meaningful in a way. And it just even just a phone call, FaceTime call or zoom like this, you know, it's just more meaningful that way.

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Janent Stewart

And you've done this in real life, Shelby. You've walked this walk. And, you know, Zach, talked a little bit about in, in his story about kind of working with you. Can you, can you share that relationship and how you, how you, worked with that in order to help him overcome some loneliness?

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Shelby Richardi

Well, we actually did some presentations, last November, we did a friendship panel, with a group of, like, students and, like, you know, students with disabilities as well and without disabilities. And we did, like, an activity of, how do we start our question like, so how are you today? Or, I'm trying to think of the example.

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Shelby Richardi

Okay. What is your favorite thing to do? What what what do you like to do for a hobby?

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Janent Stewart

You just seem so warm and welcoming and like, you want to bring everybody into the party all the time. You know, you just seem like one of those kind of personalities that people gravitate to. Did that always come naturally? You said that you struggled with loneliness yourself. I mean, how how did you kind of overcome that yourself?

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Shelby Richardi

It's so important to think positively, because when you think positively, it just makes you feel a lot better. And it makes you bring it makes you, you know, bring hope not only for myself but for others. You know, I'll say, hey, if you need anything, I'm right here. Bring like healthier habits, like, okay, like once a while I'll, I'll mail out a thank you card, you know, to where my friends and, or like a birthday card, like random act of kindness.

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Shelby Richardi

And it helps. I was just going to say that reminds me of the how to article and how to make friends. The first step was building confidence in yourself and seeing those positive aspects in yourself. Because you you need to see yourself as somebody worthy of having friends and know what your strengths are in order to make those connections.

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Shelby Richardi

So that was a good point.

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Janent Stewart

Sarah. You've done a lot of work in your professional career with Roger, Stan Clifford, who joined us for this issue, to write an article about the experience of loneliness in older ages. And you've you've done a lot of work in that age group. Can you share a little bit about kind of what you, kind of how you worked with Roger to, to bring that article together and just kind of what the, you know, the main points, from that work that you've done over the years?

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Shelby Richardi

Well, a lot of times in older age you might not have, you know, the mobility or the transportation to really go out and do things. And so a lot of times it is more difficult because you don't have the the stage, you haven't set the stage to meet people. You haven't gone out into the community or maybe you've slowly stepped back from the groups you used to be in.

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Shelby Richardi

And so that's that's a hard stage to be in, where now you're adjusting. And sometimes you could use online, you know, avenues to support yourself sometimes, but you know it's not enough. Right. And the transitions in your life, whether it be transition from work to retirement or maybe you're living with your family and now you need to live on your own or in a different place.

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Shelby Richardi

Those transitions are sometimes even harder for people with disabilities, because they might lose a family member also lose housing, and with that, when they move somewhere, they might lose where they went to church or where they did their activities because they're too far away. And so that's a lot of loss at one time. And now they're starting from ground zero, where they have to build up their community.

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Shelby Richardi

And so there can be a lot of loneliness in that time. And they really need support. And I think it also reflects sometimes I was thinking about this in the beginning, that we can be around people, but we can still feel lonely. So even if we get out there and we're by ourselves or in a group, we might we might still have those feelings inside of us.

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Shelby Richardi

And and that's okay. It's good to know that they're there so that you can work on it, because there's a difference between social isolation and loneliness, where you might some people, when they're alone, they might need that time to recharge. But other people, you know, they they might feel differently. So we all have different needs in that area.

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Janent Stewart

Exactly. Zach, let me go to you for a second. You reached out to quite a few of our officers, from kind of carrying over work that you've done in the past with people, you know, as you think about the, the articles that you've, that you've read for the issue, are there is there one the, really stands out.

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Zach Rossetti

So, yeah, there are two. The first was, by coauthors Janet Sauer and on Billy, they, are both very knowledgeable and experienced in disability related fields. As, one's a professor once, advocate, and kind of leader, in and related to, advocacy. And they both. Are also mothers of young adults with intellectual and developmental disabilities.

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Zach Rossetti

And their article, describes lots of different, challenges and difficulties, during the transition process from school to adult, developmental disability services.

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Janent Stewart

And that transition time can be pretty. We just talked about in older ages. But that transition time can really be a rough go. And and I thought that article was just so powerful in that we just sit with them in that, you know, and it's it's powerful to acknowledge that this is really still a problem that we're dealing with in the field.

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Zach Rossetti

Definitely. There are, you know, unique circumstances in each of their, stories. As with everybody. But the, the, these problems, you know, and there are multiple problems, are kind of linked to. So having connections in school and when you're younger can usually help during times of transition. Like this. And if there are, circumstances where, you know, you might move or encounter some of these difficulties, you know, it kind of sets you, at risk for loneliness moving forward.

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Zach Rossetti

And, and so I found that to be one of the most powerful articles and people have been talking about, the transition from school to adulthood, as, you know, challenging for years as kind of, as I've heard it often described as as falling or jumping off a cliff, many times. And, you know, they shared some more examples of that.

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Zach Rossetti

And so I think it's and people are aware of that, but it's, it's more in terms of the transition process and adult services, adult services, I think hopefully what comes across in this issue is that we need to consider experiences of loneliness and the lack of social belonging much more, you know, during these times of, of change.

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Janent Stewart

And then was there another article that you wanted to share about?

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Zach Rossetti

Sure. The other one was by, Pauline Bosma, who is the founder and director of the Rainbow Support Group, supporting, individual LGBTQ plus individuals with intellectual and or developmental disabilities. Pauline is, the rainbow support group is is part of Massachusetts advocates standing strong fantastic self-advocacy group. And the thing that stood out about her article was that, well, two things.

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Zach Rossetti

Advocacy, can be one joint venture with shared goals, for adults with intellectual and developmental disabilities. And I think that it it it is something that a lot of people have been involved in. For that reason. And it also meets, social needs. And in that article, Pauline describes that through the kind of shared work that they do in their meetings.

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Zach Rossetti

And then as they've gotten to know each other, they added, you know, summer, July 4th, barbecues and social events, that the advocacy, is a way to also, increase social belonging. So kind of meeting a couple of goals there that.

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Janent Stewart

I loved that about, several of our articles, our program profiles, did one or the other. They either started with a shared interest and then companionship and belonging happened as a sort of side benefit. Or there were groups that sort of intentionally got people together around the concept of community, and then maybe they ended up being advocates or doing, you know, doing something.

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Janent Stewart

So it kind of went both ways, which I really loved that about about some of those articles. Shelby, what stood out to you? What was one of, the articles that really struck you?

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Shelby Richardi

One of the articles that, you know, I really have struck me was, no one cares that you're there by Zach Taylor. He's one of my really, really good friends. To which it was amazing. Oh, I when I saw it, and the reason why I was like, it's so important, you know, is because, like, you know, it's saying that to be able to meet people face to face, you have to like, you know, like, make the effort.

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Shelby Richardi

To, to at least try a, you know, start conversation, just like, you know, they only, you know, going to like, hey, how's it going? How's your day? You know, with someone, like, because the more you socialize, the more comfortable you're going to feel. The other article, the, you know, that kind of struck me was, for again to we article by Patty Menzel.

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Shelby Richardi

That's also important because it brings out a good point. You know, that sometimes, you know, being a friend, it can happen unexpectedly, like in a, in a place like, you know, when Patty wrote that she met this woman, the elevator with her dog, just a small conversation just brings connection. It was just so cool.

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Janent Stewart

You know, more and more in disability, we we seem to be getting to the point where we it can't just all be about a program, right? It has to be something that is happening naturally in community is and and as communities, we have to realize, you know, to be a citizen to, to, you know, to have a great community, everybody needs to be involved.

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Janent Stewart

As I think about this issue, loneliness is is clearly a critical issue, but I think it also ties to a lot of the other work that the field does in in disability advocacy and in research. When we think about the the basic promise of closing institutions and bringing people with developmental disabilities more truly into communities, loneliness isn't an add on.

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Janent Stewart

Or, you know, something that we do as the cherry on top kind of thing. But it is really fundamental. Sarah, what do you you've done so much work in this area. Do you see as a strong connection there with, just the the fundamental principles of community inclusion with, with loneliness?

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Shelby Richardi

Oh, yeah. They go hand in hand. Because we have, you know, loneliness. It really you have that experience. I don't think we've said this yet. You have that feeling of distress, but it also impacts your health, your physical health, your mental health. There's a lot of risks to loneliness, too, where whether it be, just physical health or the choices you make.

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Shelby Richardi

And the more isolation you put yourself in and there's in the research, there's also risk of suicide thoughts. And so this is very important. And it's just like, Eric Carter's article with the dimensions of belonging. Those are a lot of the steps we can take to develop a community that's more welcoming, that people feel like they can belong in.

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Shelby Richardi

And I think a lot of times when we're talking about loneliness and we're like, oh, make a friend, you don't always have to like do that step of like creating a best friend. But there's being a part of your community feeling like you belong in your community. So being a regular at a coffee shop, being a regular at a restaurant makes you feel like you belong there.

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Shelby Richardi

Like, oh, they're checking in on me. They asked me where I was last week because I wasn't here, you know? And so it's it's having those relationships at all different levels in the community. And I think we also emphasize a lot about even having a pet. And, you know, and that's another thing, like when you get older, sometimes you can't leave the house as much, but you have pets or you have a pet when you go outside on a walk and you say hello to your neighbors because they're like, hey, who's your dog?

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Shelby Richardi

How is this? You know, they they might get to know your dog first, but then they might ask you who you are. And so I think that's more of a holistic view of, you know, loneliness and then going towards, you know, social inclusion and a sense of belonging. It's not just a one on one. It's you have those one on one, you have family, you have siblings.

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Shelby Richardi

We did have a lot of good sibling perspectives in this, of them supporting each other and even spiritual support. We had a wonderful article about supporting people in their spiritual journey, which really connected them to either a church or a faith based organization, or just supported them internally themselves. To have that confidence and in order to make relationships, that's wonderful.

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Janent Stewart

That could be final thoughts.

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Zach Rossetti

Yeah. As a as a relatively new pet owner, for the first time in my life, I was so pleased to, see all the mentions of pets in this issue. And glad you brought it up, Sarah, because I think that, you know, whether someone is isolated or not around lots of people or not, you know, what we're talking about in terms of combating loneliness is a meaningful connection, to a job or a volunteering opportunity.

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Zach Rossetti

And the people that are there having being valued and having a valued role. Right. And, you know, whether at the coffee shop in the community with a pet, all of these are ways that I think someone can feel like, feel connected. And all of these connections, I think, are what make, social belonging. And so it is, as you said earlier, Janet, there is a little bit of tension sometimes between kind of group programing and, and, you know, kind of individual preferences and, and things happening naturally.

00;27;08;07 - 00;27;38;01

Zach Rossetti

And I hope moving forward, thinking more about loneliness and approaching it more holistically, as Sarah described, I hope that, all of us can figure out that balance a little bit in turn. And, you know, based on what someone wants to do in their life. I think some things need to be scheduled. Everyone's busy. If it's not scheduled, it doesn't happen.

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Zach Rossetti

Right. And sometimes that's a group activity. Sometimes it's a, you know, an individual joining a club or something that they love to do, but also having the flexibility to go to the park on a nice day or if there's a great concert in your area, being able to go to that and having people to go to it with, like so.

00;27;59;14 - 00;28;15;21

Zach Rossetti

So figuring out that balance is huge. And and the last thing I have to mention, one of my favorite things in all of the articles was in our article, Shelby, you talked about some of the things you like to do. And there's a weaving class.

00;28;15;23 - 00;28;16;27

Shelby Richardi

Which weaving class?

00;28;16;28 - 00;28;18;24

Zach Rossetti

Swedish weaving class.

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Shelby Richardi

Yes, I love it. It's just so like organic. I think it emphasizes that the choice because loneliness is a personal experience, and people need to have a choice about what they do. Some people love doing things with other people with disabilities. That should be a choice. Other people do not, and that also should be a choice for them to go out into the community and do other things.

00;28;45;20 - 00;29;03;23

Shelby Richardi

And maybe they have a mix of things they do as well, but it's kind of whatever fills your bucket. You know, you're talking about those meaningful connections. You know, maybe I want to advocate and I'm advocating with other people with disabilities. I love it. And then also, maybe I want to do a craft and I'm doing it with other people too.

00;29;03;23 - 00;29;07;20

Shelby Richardi

It's your choice. And you're finding your people.

00;29;07;22 - 00;29;28;27

Janent Stewart

As we think about all the articles we've just done and we think about what the field needs to move forward, is it that we need more research? Is it that we need more, groups like the the programs that we profiled? What what do we really need to do?

00;29;29;00 - 00;29;59;24

Shelby Richardi

I think one thing that has not been talked about as much, and so it it would be good to further research and just to experiment with is to have these encounters in the community to really get to know your community and an encounter, meaning just meeting people and being a regular at places, whether it's a regular at a group or, you know, the restaurant or the library having those regular connections, I think that's something we don't focus on enough.

00;29;59;27 - 00;30;14;16

Shelby Richardi

And then I think it's just also the intentionality of like, okay, well, you can be in a group, but now I'm going to intentionally support you to have that meaningful participation, have a meaningful connection.

00;30;14;18 - 00;30;47;14

Zach Rossetti

We need to, translate some of, what we know even more in our service systems. And any ways that service systems can become a little more nimble, a little more flexible, and respond to to people's needs and get at some of the balance, between kind of group and individual, between scheduling and flexibility and, and increasing meaningful encounters.

00;30;47;15 - 00;30;50;22

Zach Rossetti

As, as Sarah described, I think would be incredible.

00;30;50;24 - 00;31;14;24

Janent Stewart

Thank you so much. Not only for today, but for the hours and hours you all spent in really fanning out, across the disability field and getting in contact with some really wonderful authors for this issue. You all wrote terrific pieces and and just really guided a cohesive, strong issue. And so I just wanted to thank you for that.

00;31;14;24 - 00;31;23;05

Janent Stewart

And, just can't wait for the launch. That's about to happen.

00;31;23;07 - 00;31;33;18

Janent Stewart

Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email icipub@umn.edu.

00;31;33;20 - 00;32;09;10

Pete McCauley

Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact managing editor Janet Stewart, and ICI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ici.umn.edu.