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

The Shervheim family (left to right) Karen, Lee, Katie, Emie, and Ann recently visited the studios where the Impact: The Conversation podcast is recorded.

Editor’s note: Part of the Shervheim family joined us recently to talk about loneliness and disability. Karen and Lee Shervheim and their daughters—Ann, Emie, and Katie—shared how and why they became a family in this excerpt from a new episode of the Impact: The Conversation podcast, available at https://impact-the-conversation.captivate.fm/. Lee chairs the Minnesota Governor’s Council on Developmental Disabilities (mn.gov/mnddc/council/council.html).

Impact: Thank you for helping us with our issue on loneliness. Loneliness has become an epidemic in our society, and it can lead to serious mental and physical health issues. As we put this issue together, we wanted to talk with your family because you have such an intentional story about companionship.

Let’s start with you, Ann. Can you first tell us a little about you?

Ann: Yes. My original name was Annie Amelia Shervheim, but I have a stage name, Ann Grace Winter, because I want to be an actress. I’m 20 and will be 21 soon and I go to a transition school. I started taking acting classes with my sister Emie and my sister Katie took a class once, too. I always put them first because they are really important to me.

Impact: You all stick together pretty well?

Ann: Yes, but when we were little, I was actually the quiet one. I just stuck with Mom and Dad. I came out of my shell because acting was important to me. I put my family first, but my acting second. I want to pursue it, and someday meet Idina Menzel, and my favorite singer is Lana Del Rey. I love her so much because she has a gothic side and that’s kind of my style of music. I like something really dark.

Ann leads part of an Impact: The Conversation podcast.

Katie comforts her dad while telling family stories.

Impact: Well, let’s talk about dark things. Can you think of a time in your life when you felt lonely?

Ann: I felt the loneliest when my brother Daniel left for California. I was hollow. I was lonely. He’d been my home for many years, and I miss him so much. We were really close.

Impact: I love how you put that—he had been your home.

Ann: Yes, it was a few years ago. Then my whole family got COVID-19, and we were lonely together.

Impact: And when he was getting ready to leave, did you have much notice?

Ann: No, I didn’t know he was going to leave. And then both of us just immediately shut down and started crying. After he left, I didn’t want to come out of my room.

Impact: How did you work through that?

Ann: With a little bit of time. And with my family. I get a lot of encouraging words from Emie. She’s really important to me. She’s my home now and without her I would be lonely probably every day of my life.

Impact: I know you’re a writer for your transition program newspaper, Ann, so why don’t you introduce some of your family members and ask them how they think about loneliness.

Ann: This is my dad (Lee). What does loneliness mean to you?

Lee: Really good question. One of the times I was really lonely was when I went to college. It was the first time I had been away from home, and I didn’t know anybody. It was a hard time.

Ann: I want to know how you and Mom got together, got engaged, and got married. And did you have a crush on her?

Lee: Well, yeah, I kind of did. We were college students and were going to the same church. I thought she was pretty cute, and I liked her a lot. We fell in love and decided to get married.

Ann: And then have kids. And then both of you gave me the one thing that I needed the most, and that was both of you and Emie and Katie.

Lee: Yes, we had Daniel and Andrew, who are twins. And then Sam, and then you, our first girl. And you were our first child with Down syndrome. And that was a little bit of a surprise and at the beginning, Mom and I were afraid and there were some feelings of being unprepared to figure out what was next. And then you have another brother, David, who is still in high school now. When you were not very old, we started thinking about your future. And we [wondered,] what will Ann do when she gets older and who will her companions be? Who are the people that will be around her and with her, and also maybe help to make sure that she’s not lonely? This was about 2006, you were 2 or 3. We became aware of an organization that facilitated adoptions between couples in the United States and children in Eastern Europe, mostly, who had developmental disabilities. We saw a picture of Katie and just became kind of convinced that Katie needed to be part of our family. So, we started the [adoption] process and went to Ukraine for six weeks. While we were there, we were shown a picture of Emie…and we just knew she needed to be part of our family as well. And you [girls] are all around the same age.

Impact: Was loneliness on the top of your mind when you were both thinking about this?

Lee: [We were] thinking about companionship, because I think both of us had this sense that Ann would be close to her brothers, but whether it’s geography or whatever, I mean that tends to split people apart. So, I think we were really thinking about who her companions would be as she got older. And that part has worked out really, really well. All three of them are super good friends. I mean, they are regular sisters, but they also really do have a lot of fun together.

Impact: So, as you started getting more and more involved in different kinds of advocacy groups, can you talk a little bit about how your experiences taught you to understand how people with disabilities experience loneliness?

Lee: I had an [older] cousin with a developmental disability who spent time in several of the institutions that Minnesota had, and then as he got older, moved into community housing and then finally ended up back with his family. When you have a child or children with disabilities, there really is no playbook. So, it was a bit of a challenge. But there were several things that were helpful. We were involved in Special Olympics when the girls were small and that connected us with a pretty awesome parents’ group. Parents [talk about] what’s happening and what kind of services [are] available, or what are you exploring, or what’s working for your children? And you talk about doctors, and you talk about dentists, and you talk about everybody who can help.

Emie and Ann talk about loneliness.

The other thing that was important for me, again from a parent’s recommendation, was to take the Partners in Policymaking class that was sponsored by the Governor’s Council on Developmental Disabilities. That opened my eyes. We learned about the history of disability, and it was amazing because some of those were things that I had experienced in my family personally. And just recognizing that, yes, that’s our past, but it doesn’t necessarily have to be that way in the future. And so, as I learned more about advocacy and about reaching out to legislatures and the role of government and learned about the Americans with Disabilities Act, the IDEA Act, all those things, that just was very empowering for me because I realized that things could be very different for my children than maybe what people had experienced previously. And [serving as chair of] the Governor’s Council keeps me really plugged into both what’s happening, what we need to be concerned about as parents and advocates. And most importantly, what remains possible. Because the life of somebody who has a developmental disability does not have to be anything close to what it was in the past. They can choose the life they want, and our job is just to help facilitate that and make it the best life possible.

Loneliness is sometimes a byproduct of not being a part of a community. And I think one of the things that we need to continue to advocate for and to push for and to work towards is creating those communities. Ann and Emie have been part of an acting community, and Katie enjoys sports and has been involved in Special Olympics.

Impact: Katie, I noticed since we’ve been sitting here a couple of times when your dad was talking about some things that are important to him, you reached over and put your hand on his shoulder and just made him feel a little better. Is that one of the ways you show your family that they’re not alone?

Katie: Yes, and we just do things together, like cooking. And when someone is sick, I make them a card.

Impact: Emie, what do you do to keep from being lonely too much?

Emie: Well, I had surgery several years ago and I got to play with a puppy in the hospital, and that made me feel better. I also had friends come and visit and they brought presents.

Impact: Lee, any final thoughts?

Lee: Life really is a journey and it’s great when you have a supportive family and a community around you. It’s been interesting to hear their thoughts on loneliness because we all experience it and sometimes grief and loneliness can get mixed together. We need people to help us figure this out and not be lonely anymore. Right, Ann?

Ann: I would have loved to have had my brother Daniel here today, but he’s not. But we can FaceTime or plan to visit each other, so I feel loneliness is not goodbye. It’s the start of something.