When Mike asked Laura to marry him, he didn’t know that a “yes” would mean a cut in benefits — that Laura would get less than $20 in food stamps a month. Would that keep them from tying the knot? In this episode of A Valid Podcast, Laura responds to Mike’s proposal. Plus, more about what this couple — who have learning and psychiatric disabilities — have faced and where they’ve found support.
In the second half of the show, 27-year-old Hannah Dibble works full-time at a nursing home, attends weekly activities for people with disabilities and loves living alone in her new apartment. She has cognitive disabilities caused by her mother’s drinking during pregnancy. Hannah has lots of support in place to keep herself safe, but one of her favorite activities (online gaming) worries her aide.
The third season of A Valid Podcast brings listeners into the lives of people with intellectual disabilities and asks what society could do better to support what’s called “social inclusion.” The American Association on Intellectual and Developmental Disabilities says: “Social inclusion goes far beyond just being present in the community. It’s about the roles we take in civic life, who we love, and how we build fulfilling relationships with others.”
Related: Episode 2 of A Valid Podcast with the first part of Laura and Mike’s story.
The podcast is produced by All-Abilities Media at the Center for Media Innovation at Point Park University. The podcast is published via Unabridged Press podcast channels on Apple Podcasts, Anchor.fm Spotify, Google Podcasts and others. Images and written material appear on PublicSource.
Liz Reid, of Jeweltone Productions, interviewed Laura and Mike for this episode, in addition to engineering and mixing audio. She was assisted by Point Park University sophomore Claire Lindsey, thanks to support from the Pittsburgh Media Partnership. Jennifer Szweda Jordan hosts this season with commentary from award-winning podcaster Erin Gannon. PublicSource Managing Editor Halle Stockton provided editorial advice. Cover art was created by Mick Fisher, with assistance from Creative Citizen Studios. Music on this series performed by Lilly Abreu (guitar), George Casselberry (harmonica) and Jane Ondrusek (piano) from the Woodlands Foundation.
GUESTS:
Laura and Mike Hodes
Joe Herbick, Sally and Howard Levin Clubhouse, Jewish Residential Services
Hannah Dibble
Kim Rowe, PA Connecting Communities
TRANSCRIPT:
JORDAN: This is A Valid Podcast. We begin where we ended our last episode… on a really happy note.
MIKE: We went to Yokoso Japanese Steak House. I asked them to decorate the table, gave them the ring to put on the table so I can ask her to marry me.
LAURA: They had sparklers at the table.
Sound: Sparkler burning
LAURA: It was so romantic.
JORDAN: That’s Laura and Mike. I’m Jennifer Szweda Jordan. Today on A Valid Podcast, we hear from people with intellectual and learning disabilities.
They’re sharing their stories of romantic and virtual relationships. That is, online platonic relationships, gaming and Facebook, and so forth. We’re a few decades past the time when many people with disabilities lived confined to institutions. Yet, in a lot of ways, our society hasn’t fully supported social inclusion. That is, allowing people with intellectual and learning disabilities to freely choose relationships and roles in the community. We often either shelter or overburden adults with intellectual and learning disabilities. How do we strike a balance?
I’m looking forward to exploring some of these issues with you today.
Please do note that in this episode, there are mentions of suicidal ideation and self-harm that could trigger some listeners.
More about Laura and Mike after this break.
MUSIC: “Calm sunrise” acoustic guitar from Pond5.com
JAMES SHIRLEY: A Valid Podcast is brought to you by All-Abilities Media. The project is a collaboration between Unabridged Press and the Center for Media Innovation at Point Park University. We’re grateful for support from Pittsburgh philanthropies. The Staunton Farm Foundation funds mental health programming. Learn more about our mental health-related events and media at allbilitiesmedia.org. Staunton Farm’s vision is: “Investing in a future where behavioral health is understood, supported, and accepted.”
JORDAN: Laura and Mike started dating a few years ago. It was actually their psychiatric illnesses and treatments that brought them together. Laura’s mental illness started early on.
LAURA: When I was 3, I was diagnosed with depression. I have anxiety, social anxiety, dissociative disorder. I feel like I’m not in my own body, and I feel a lack of reality.
JORDAN: Laura completed high school, she went to college.
LAURA: And there was roommate problems. And my learning disability made it hard for me — a lot of struggling.
JORDAN: Nonetheless she earned a bachelor’s degree and worked as a teacher’s aide for a time. Then her mom died in 2007.
LAURA: Right after she passed away, I had two psychiatric hospitalizations.
MIKE: I had epilepsy growing up. And I was pretty, had pretty average childhood, played basketball, football, soccer. I have educational learning disabilities. And I studied retail merchandising. I worked in places like Lazarus, JCPenney’s, Kohl’s, Blockbuster Video. My mother died in 1999. I probably had it back then when she died, but nobody diagnosed me back then. But I started having, probably started having symptoms, symptoms back then. Because I was getting manicky, spending a lot of money and stuff like that.
MIKE: And I was spending a lot of time in psychiatric hospitals throughout that time. And they diagnosed me with having bipolar and borderline personality (disorder).
JORDAN: Mike married and divorced a couple of decades ago. He has a daughter who is still close to him. Mike was 50 when he and Laura met. She was in her mid-40s. They both say that their experiences with illness help them understand and support each other.
LAURA: He encourages me to talk to my therapist, to keep my therapy appointments. He just — he listens. And today, he’s gonna go to my PCP appointment with me. And that means a lot.
JORDAN: When Laura and Mike considered marriage, being together in sickness and in health, that was for real, they knew what it meant. In a moment, we’ll find out how Mike’s proposal to Laura went. That’s after this break from another podcast our producers have been enjoying.
MUSIC: Two Lives theme
LAUREL MORALES: Growing up mixed race, Charmaine Fury says she never completely fit in.
CHARMAINE FURY: I generally, I got to be Black if I was around Black people, you know. Someone might say, ‘You won’t understand because you’re not all the way Black.’ I didn’t necessarily get to be Japanese around Japanese people. And despite having two white grandparents, I was never a white person. So that meant finding home was hard. It’s coming up in season four of 2 Lives.
JORDAN: Learn more about the Two Lives podcast at 2–that’s the number 2 -lives- dot org
And–drum roll–here’s the moment you’ve been waiting for. Laura and Mike had been together for a while. He buys a ring, they go out to eat…
LAURA: So he showed me the engagement ring and, um, the rest is history.
JORDAN: And woohoo! She said yes.
LAURA: And all the staff came and clapped for us.
JORDAN: A half a year passed and then…
LAURA: It was a very small wedding. And it was really beautiful with a lot of roses, the Rose Garden, and it was special.
JORDAN: So I’ve been keeping their last names from you for a while. I didn’t want to give away the secret before that they were married. But now I give you Mrs. and Mr. Laura and Mike Hodes. They’re by all accounts really happy. When our team met them, they’d snuggle on the couch together, walk around and laugh and smile a lot.
LAURA: He’s a great cook. I don’t cook so (laughter)…
JORDAN: And yet it’s not as if their health challenges evaporated. Within a few months, Mike faced a crisis.
MIKE: I had a breakdown where my voices got stronger and stronger. And it just got to me, and where I wanted to cut and overdose. So we talked to my therapist, and she helped me work through it.
LAURA:I told him that he could manage it, but if you need to go to the hospital to be evaluated, he should go.
JORDAN: Mike spent a night or two at a clinic called Resolve Crisis Center. Then he returned to the place where he and Laura met and where they spend their weekdays. It’s called the Sally and Howard Levin Clubhouse, and it’s a psychiatric and social rehab center run by Jewish Residential Services. Joe Herbick, director of the clubhouse says he and Laura keep an eye out for Mike.
HERBICK: We team up sometimes and make sure Mike’s taking care of himself.
JORDAN: And of course, same goes for Laura. Mike and Joe have her back, too. At the Clubhouse, routine is key. Along with others who’ve had psychiatric breaks, Laura and Mike set their goals at 10 a.m. It’s to stay in the habit of a workday schedule. Mike sells burgers and snacks at a cafe. Laura helps him out. Laura is also known for her work in the kitchen, where she patiently brushes braided Challah bread with egg.
The couple says the Clubhouse is like a family. And while it provides a lot of support, Laura and Mike also rely on assistance from what’s called a supports coordinator. The coordinator’s role is to ensure people with disabilities have food, medical care, safe housing, good social relationships, you know those things that all of us need. But Laura says about her supports coordinator:
LAURA: She wasn’t the best.
JORDAN: Laura says the coordinator wasn’t returning calls, canceled appointments. She’s waiting for a new coordinator. We couldn’t verify this information with the coordinator’s agency. But Laura’s wouldn’t be an unusual complaint. One study found that supports coordinators’ case loads, low wages and exacting compliance documentation can lead to burnout and turnover.
If Laura had been in touch with a coordinator, she might have known that saying yes to Mike’s proposal meant losing a substantial amount of food stamps. Now she gets $16 a month. Yep, $4 a week in groceries compared to over $100–what she was getting before. Mike warns listeners:
MIKE: Now if you get more social care and you’re living with someone who makes less in your together, make sure you can afford to live off of that before you get married.
JORDAN: Mike said they would have gotten married even if they knew that.
MUSIC: Piano, “Yes, Sir That’s My Baby!,” by Jane Ondrusek, the Woodlands Foundation.
MIKE : Marriage is important to me because I’m with the one who means a lot to me. She’s my rock.
LAURA: It’s very special. And I trust him. And I believe in him. And I love him.
SHIRLEY: PublicSource, the Pittsburgh nonprofit news outlet is providing editorial advice for this podcast as well as photos on its website. Please do check it out at Publicsource.org. Unabridged Press, and the nonprofit All-Abilities Media first partnered with PublicSource last year for the 30th anniversary of the Americans with Disabilities Act.
JORDAN: Now on A Valid Podcast, we make a shift. We’re moving away from talking about romantic relationships among people with intellectual disabilities. Because some people like to be on their own.
DIBBLE: I like to play this one game on my Switch.
JORDAN: What is it?
DIBBLE: It’s called “Animal Crossing.”
JORDAN: That’s 27-year-old Hannah Dibble. Animal Crossing, a video game was her answer when I asked what she likes to do at the rec center where we are now. Even though she plays the game at home, not here. It obviously dominates her list of favorite pastimes. It’s not that Hannah doesn’t like the rec center. When she’s here, she says:
DIBBLE: I do arts and crafts. And I color and I draw.
JORDAN: The organization PA Connecting Communities runs this program for people with disabilities. It’s in Pittsburgh’s South Hills. When I visit, there are seven people with disabilities here with their aides. Hannah’s aide Kim Rowe explains today’s activity.
JORDAN: So what do you have there?
ROWE: Ribbon. Just gathering up other stuff. We made like, we’re actually working on a tree for over at the Tree of Life Christmas thing. We’re doing snowmen and snowflakes. And what we’re going to represent is how every snowflake is not the same. And everyone comes in different packages. So we’ve created some snowflakes out of popsicle sticks with just a little hot glue and some paint.
JORDAN: Part of Kim’s role is picking up Hannah and working with her at the center. She also says she’s trying to get Hannah out more and interacting with people. And Hannah’s kind of on the fence about that.
DIBBLE: Like I like to keep to myself
JORDAN: Hannah moved into her own apartment for the first time about six months before we met. She finds the quiet a welcome change from growing up with 15 people.
DIBBLE: I do like the quiet now because when I used to live with my family it was always loud and noisy, dogs barking, kids fighting.
JORDAN: Her parents adopted all of their children, who’d come from homes where there was drug abuse. Hannah describes her own disability as having difficulty processing information.
DIBBLE: So I was adopted by a wonderful family. But before that, my birth mother — when I was inside, inside her stomach — she would, used to drink with me inside her stomach. And that’s how I got my brain issues.
JORDAN: Hannah’s birth mom is deceased. She had a stroke. Now Hannah’s still close to her family. But when she moved,
DIBBLE: I started to isolate from my family. And that wasn’t good.
JORDAN: Hannah doesn’t say exactly why it wasn’t good. But public health experts say that isolation for people with and without disabilities can be connected to depression, anxiety, poor physical health. And that too much time alone can even risk cognitive decline and premature death. Hannah says now:
DIBBLE: I have decided to keep in contact with my family and try to go over there once a week. At Christmas time we get together. And we open presents. And then we eat dinner and then we usually watch a movie.
JORDAN: Hannah socializes other ways, too. She has friends from high school she enjoys. They like to shop, go out to eat. But she doesn’t see her best friend much.
DIBBLE: Every time I try to get together, she’s mostly busy with her family.
JORDAN; And Hannah actually sounds pretty busy, too. Besides Fridays at the rec center, she works five days a week in a nursing home kitchen.
DIBBLE: I wash pots and pans. I make chef salads, PB&J, fruit plates, small salads. I pour the cereals for the next day. I clean the food cars, the coffee carts, and I sweep and mop.
JORDAN: She leaves in the morning and isn’t back until after 8 p.m. And even though Hannah likes being alone, I wondered if it made Hannah nervous at all, coming back so late. She says, ‘No.’ Her mom helped her put in place some support from disability services agency Achieva.
DIBBLE: And they call me every night to check up–check up on me to see if I’m OK, or if I’m doing well. And they–I have cameras in my apartment. So they watch me throughout the night.
JORDAN: Oh, how do you feel about that? Are you excited? You sound like you’re happy with this.
DIBBLE: Yes, I am happy that someone’s watching out for me throughout the night.
JORDAN: And Kim regularly works with Hannah in her home.
ROWE: We can actually work on goals and things that she needs to have extra assistance with. I will hand-over-hand help her clean her house or her apartment. She has measurements put in place as far as like electrical, or her stove, like there’s an electric shut-off, or there’s an alarm that says you know, you left something on.
JORDAN: So Hannah’s got a lot of safety covered. And she says she isn’t lonely. When Kim’s not there, her cat, Lily, keeps her company. And then of course there are the cartoon-like animals and virtual human companions in her favorite game, Animal Crossing.
MUSIC AND SOUND: Animal Crossing New Horizons theme and game actions
JORDAN: It’s a so-called social simulator that she plays on a Nintendo Switch. Players move little joysticks with their thumbs to virtually explore an island, hang out on a beach or hunt for fossils. It’s as colorful as Candyland. Hannah and others create animated characters to represent themselves. They chat with each other in the game. Hannah sometimes plays virtually with her boss from the nursing home. But most of the people Hannah doesn’t know. And that anonymity worries Kim. But less so than a previous game. Hannah was in two called IMVU. Here’s YouTube gamer M-M-OH-uts reviewing IMVU.
MMO Huts: I mean, this game is really popular for some reason. But it just comes down to teenagers and kids lying about their age — so they can go on the side with each other. Again, it’s probably a really fun place to troll around.
JORDAN: Hannah explains why she switched over to Animal Crossing, and Kim adds her two cents.
DIBBLE: It’s just, it’s a better game. On IMVU, there’s a lot of drama, a lot of issues. Animal Crossing is just a fun, calm, relaxing game. I like to play it for hours and it keeps me entertained.
ROWE: And it’s safer.
JORDAN: Safer?
DIBBLE: Yeah, it’s safer.
ROWE: A lot safer.
JORDAN: Hannah says she appreciates the support from Kim, her family, Achieva. All in all, she’s happy.
JORDAN: Would your life be any different if you could do anything you wanted?
DIBBLE: No. I would keep everything the same.
On the daily, Hannah’s just doing the things all of us do.
JORDAN: And you’ve got your quarters.
ROWE: Ten dollars. We need to stop and get a roll because there’s a shortage.
JORDAN: Laundry or?
DIBBLE: Yeah for my laundry.
And then later, maybe some Animal Crossing…
MUSIC AND SOUND: Animal Crossing New Horizons theme and game actions
MATT THORNTON: A Valid Podcast comes to you from the All-Abilities Media Project. That’s based at the Center for Media Innovation at Point Park University in downtown Pittsburgh. At Point Park, you can advance your career with a graduate degree. Choose from more than 20 Point Park master’s and doctoral degrees. Learn online at your convenience or at Point Park’s downtown Pittsburgh campus. Visit pointpark.edu/graduate.
JORDAN: So as we heard in Hannah’s story, interacting with people online can be fun, right? It’s what a lot of people do. For people with disabilities, it can be a great opportunity for stepping out of the worlds that are often chosen for them. And online freedom of expression for people with disabilities is actually specifically named as a human right by the United Nations Convention on the Rights of Persons with Disabilities.
And yet, caregivers like Kim are concerned about the safety issue. And I get it. Podcaster Erin Gannon, who’s been on each episode of A Valid Podcast this season joins me now. She shares a kind of a troubling story about her online relationships. Erin’s on Facebook. She has 560 friends. She shares videos, friends wish her happy birthday, the usual stuff. And like most of us, she’s confronted the occasional bad actor. Not long ago, someone reached out to her on a messaging platform called WhatsApp. It’s owned by Facebook. The person was posing as Erin’s favorite country musician. This person calling themselves Reba McIntyre asked Erin to send Apple gift cards. Erin says she never did it. A staff person at her group home stepped in when she noticed Erin was buying a lot of the Apple cards.
GANNON My boss helped me get off of it.
JORDAN: Off of WhatsApp?
GANNON. Yes. Because it was not legit.
JORDAN: Then later she says…
GANNON: (There) was a friend request which was Reba McEntire. And I, oh my God, I have to look at this. I’m like, that never happened to me before. I didn’t ask for her friend request. I just clicked on it. She posted me. I’m like, wow.
JORDAN: So do you think Reba McEntire herself actually–what?
GANNON: Are you kidding me? But when I looked at it, it was real.
JORDAN: Now, her niece told her this was the real Reba McEntire writing this time She has a check next to her name, says she’s verified, etc. But when we talked, I told Erin:
JORDAN: Okay, I’m sorry. I find that hard to believe.
GANNON No, there was one that’s really her.
JORDAN: I didn’t see the online exchanges so I’m not sure what to make of all this. A few years before, I actually did write to Reba once letting her know about Erin. It’s possible the famous singer could have reached out. But now Erin’s committed to not respond to anyone she doesn’t directly know on Messenger.
Erin’s story isn’t unique. Cyberpsychology researcher Dr. Darren Chadwick points out that policy makers need to fund services to help these adults learn how to be safe online. That means teaching family and professionals how to help people with intellectual disabilities who use social media or play online games.
These virtual concerns are just one threat that people with intellectual disabilities face in the post-institutional world. And the system of care is under strain. In Pennsylvania, more than 5,000 people are in what are considered emergency situations–waiting for funding for housing, or support services like Erin receives to live in a group home. Some of the emergency situations include living in squalor, sometimes with aged parents who can no longer take care of themselves nor a person with a disability.
Some people in these situations may be lucky enough to at some point move into a group home like where Erin lives. And yet even these group homes are facing severe staff shortages even when funding is available. I mentioned earlier in this season of A Valid Podcast that I’ve worked in Erin’s group home agency, Emmaus Community of Pittsburgh, for over 15 years. In the next episode of A Valid Podcast, we’ll hear from another person who lives where I work, and from some of my colleagues:
MUSIC: Electric guitar, country
WILSON: I made a career change about 10 years ago, I worked in the office field for, gosh, 20 years. And I actually started substitute teaching and my first class, or my first class that I started, subbing was a week long working with individuals with Down syndrome. And I just kind of fell in love with the field.
JORDAN: Thank you so much for listening. A Valid Podcast comes to you from the All-Abilities Media Project. And from interviews to music cover art for this podcast, the majority of us producing this work have one or more disabilities. Others on the team don’t identify as having disabilities. Halle Stockton, of the news outlet PublicSource, is the lead editorial consultant for this podcast. Liz Reid of Jeweltone Productions is our audio engineer and sound designer. Disability advocates Dr. Rachel Kallem Whitman and Erin Gannon consulted on the content of this podcast.
Claire Lindsey assisted Liz Reid in interviewing Laura and Mike. She is a Point Park University student and her work was made possible through the Pittsburgh Media Partnership
Portions of this podcast were recorded by Dan Yost at Just Records in Dormont. Pennsylvania.
I’m Jennifer Szweda Jordan, I publish Unabridged Press and manage the All-Abilities Media Project at the Center for Media Innovation at Point Park University. CMI director Dr. Andrew Conte are co co-executive producers of this podcast. I hope you’ll check out the great photos of Laura and Mike and Hannah that accompany this podcast on publicsource.org. I’ll catch you next time. Do take care.
This podcast was made possible with financial support from The Edith L. Trees Charitable Trust.