Ohio DD Talks

Your Story Matters! Exploring the "My Life. My Story." Storytelling Workshop

• produced by 23 East Group • Season 2 • Episode 11

Share episode

In this episode of Ohio DD Talks: Ambassador Edition, host Shari Cooper guides a conversation about the My Life. My Story. Storytelling Workshop, which is helping people with developmental disabilities in Ohio share their experiences in their own unique ways; and helping to build connection, empowerment, and inclusion.

Shari is joined by Dr. Becca Monteleone, Assistant Professor of Disability Studies at the University of Toledo, and Alicia Hopkins, an advocate, artist, and workshop participant. Together, they discuss how the workshops have become a platform for people with developmental disabilities to share their voices, challenge misconceptions, and build confidence.

Dr. Monteleone shares how her background in inclusive theater inspired her to create the program, which has reached rural and underserved communities across Ohio. Alicia opens up about how the workshop helped her grow as a storyteller and advance her career goals, including promoting her book, Audacity to Speak.

The guests also highlight the diversity of stories told in the workshops—from personal successes to everyday challenges—and the meaningful connections formed among participants. The workshops provide a space where participants can express themselves in ways that honor their individual communication styles through words, art, or assistive technology.

Host:
Shari Cooper, Ohio Developmental Disability Council Ambassador

Guests:

  • Dr. Becca Monteleone: Assistant Professor of Disability Studies at the University of Toledo and facilitator of the My Life. My Story. Storytelling Workshop.
  • Alicia Hopkins: Advocate, artist, author of Audacity to Speak, and workshop participant.

Key Topics:

The My Life. My Story. Storytelling Workshop:

  • A one-day storytelling program that empowers individuals with developmental disabilities to share their stories.
  • Stories range from personal challenges to community advocacy, offering participants a platform to connect with others and develop their voices.

The Impact on Ohio’s Communities:

  • Workshops have been held in rural and underserved counties, creating opportunities for connection and expression.
  • Participants present their stories in public spaces, fostering awareness and inclusivity in their communities.

Advancing Advocacy Through Stories:

  • Alicia Hopkins shares how the workshop helped her promote her advocacy efforts, including her book Audacity to Speak, which highlights her personal experiences and disability rights issues.
  • Dr. Monteleone emphasizes the importance of amplifying the voices of people with disabilities and challenging societal misconceptions.

Diversity and Accessibility in Storytelling:

  • Participants are encouraged to share their stories using the communication methods that work best for them, including art, assistive devices, or collaborative interviews.
  • The program demonstrates how storytelling can be accessible to all, creating a space for everyone’s voice to be heard.

Resources:

Welcome back to another edition of the Ohio Developmental Disability Podcast, Ohio DD Talks. This is the Ambassador's Edition, and this is your girl Shari Cooper. Today, we are talking about the power of stories.

Stories connect us to each other and to our community. Through stories, we can learn about ourselves and understand more about the world around us, and we believe that everyone's stories matter. Today, we are talking to the Ohio DD Council's very own Storytelling Instructor, Dr. Becca Monteleone, who is an Assistant Professor of Disability Studies at the University of Toledo, and the creator and facilitator of the My Life, My Story Workshop.

The workshop is a one-day course designed to empower people with disabilities to share their own stories in their own way. We also have the privilege of talking to Alicia Hopkins, an advocate, artist, and My Life, My Story participant. So with that, let's go, let's go, let's go!

So I'm going to jump right in, and I'm going to ask Dr. Becca Monteleone and Alicia Hopkins to introduce themselves. So Dr. Becca, I'll go with you first. 

Dr. Monteleone: Hi, thank you, Shari. My name is Becca Monteleone. I am an Assistant Professor of Disability Studies at the University of Toledo, and for the past, gosh, now eight months, I have been the facilitator for My Life, My Story with the Ohio DD Council, which I'm really excited to share with you all today. Thank you.

Shari: So Alicia, I'll send it over to you. 

Alicia: My name is Alicia Hopkins. I'm a disabled advocate, and I was a participant in My Life, My Story, and thank you for having me today.

Shari: So thank both of y'all for being here. So the first question I got for you, Dr. Monteleone, what inspired you to start My Life, My Story? 

Dr. Monteleone: Yeah, I mean, that's a great question. And so, I mean, just for a little context, My Life, My Story is a series of one-day storytelling workshops that we have been doing all around Ohio, where we spend seven to eight hours together with a group of self-advocates with developmental disabilities to develop performances that are based on critical memories.

And so if you're familiar with something like The Moth or something like this, it's like public storytelling, these like two to five-minute stories, monologues, basically, are what we end up putting together. So my involvement with storytelling goes back to, I have about 15, 20 years of experience in inclusive and accessible theater, and I started to develop some storytelling programs with a theater that I was working with, with actors with developmental disabilities. I had some colleagues who were doing this kind of work with non-disabled people, and we had some discussions about, well, why aren't there opportunities for people with developmental disabilities to share their stories? I think many of us know that often people with developmental disabilities get talked about, but don't often get to talk, right? There's this kind of insidious myth that disabled people need someone else to speak on their behalf, whether it's a parent or a professional or someone like that.

And so part of the goal of these kinds of storytelling programs is to argue people with disabilities can speak for themselves and have important things to say. And so I wrote a curriculum for a storytelling program that was basically a six-week program where we would meet for once a week and develop stories together, which then we would do public performances. And so I moved to Ohio to start my job here at the University of Toledo in 2020, and I started working with the self-advocates of Lucas County on this storytelling program, which we've now performed in a bunch of public venues in Toledo, including we do an annual performance at the Toledo Museum of Art that gets over 100 community members to it.

And so the last time we ran that program, the DD Council learned about it and they reached out to me to ask if there's a possibility of bringing this kind of storytelling workshop to the rest of Ohio. And so that was sort of the beginning of my life, my story. And so I've worked with the DD Council, particularly they were interested in bringing storytelling workshops to the kind of most rural and underserved counties in Ohio to create some new opportunities in those places.

So that was our initial impetus for starting this storytelling program. 

Shari: Dr. Monteleone, that is so cool. So would you compare my life, my story curriculum to maybe a TED Talk? 

Dr. Monteleone: So I think that's a pretty good comparison because I come from like a theater background.

I tend to think of it a little bit more like a dramatic storytelling. Right. So I think sometimes we get too much in the mindset that our stories have to have some sort of like instrumental purpose.

Like we can only tell a story if it's going to push a policy forward or something like that. Right? But I feel really strongly that all the kinds of stories that we have to tell about our lives are important.

So for me, I like to think about storytelling as the opportunity to pick the thing that people are surprised to learn about you or the thing that you care about that people might not know about or an experience you've had that that is relatable to someone who might feel alone in having that experience. And so it is similar, I guess, to a TED Talk in the kind of presentation way. But I like to think about the kind of topics that we can tell stories about are infinite.

Shari: Right. That's great. I love that word: infinite.

I mean, you can just talk about anything that you feel passionate about. Well, thank you. My next question is to you, Alicia.

How did you decide what story to share in the workshop? And how did it make you feel to present it to a group of people? 

Alicia: Well, Dr. Monteleone, she talks about how it was important to tell our stories and to tell, like, other people; like when we tell our stories to tell who we are and what we want others to know about us. And so a big part of my life is that I use art to communicate on my everyday life and something that I've been really advocating for. So I decided to tell a story about how I used art to communicate and advocate for myself and others. 

And I talked about something that I did where I told the stories, like my story and the stories of others using art. Like during this last state budget, I used art to tell people's stories, basically to legislators. And I also traveled the state of Ohio and did virtual meetings, too, where we had people write postcards.

And so I talked about how they cause an effect of the story because she talks a lot about that in her workshop, is being able to share your story in more in-depth and everything and being able to share like, you know, this happened, but this is how it affects me. And so it really helps me grow as a person. It also like sharing my story and presenting it with the art was actually a really cool experience for me because that's commonly what I do, like in my private life and with my caregivers, like I use art to problem solve a lot and to really tell people how I feel and the bigger ideas.

And so I kind of felt like it was a very accepting environment, like people were able to, I really loved the workshop and you were able to present like in the best way you communicate. And so because everybody communicates differently and everything. And so I felt like very comfortable in that setting to communicate.

And it actually helped me in many ways. And I can tell you about that later. Thank you.

Shari: Well, that sounds like a great experience. Sounds like you got a lot from it. Thank you, Alicia.

I'm coming back to you, Dr. Monteleone, and this is a geographical question. So my first part of it is how many counties has my life my story been to? 

Dr. Monteleone: So over the summer, we did six workshops all across the state. And so we went to Ashtabula, Brown, Medina, Morgan, Morrow and Putnam counties.

And so we did that during the summer. And then just in the end of November, we started a kind of second round of workshops. And so in those workshops, we're going to all eight of the developmental centers between December and February.

And so we've done three of those so far. So in the last month, we went to the Southwest Ohio Developmental Center, the Cambridge Developmental Center and the Tiffin Developmental Center. And then this Friday, we're going to Warrensville.

So we've gotten a pretty good kind of geographic spread all across the state. And, you know, I'm from Ohio originally. But what's been really exciting about this is many of these are places that I've never gone before.

And so I feel like I'm getting to learn a lot about the state during these workshops too. 

Shari: OK, well, with that being said, you visited some very small towns, like the Village of Ripley, Ohio, which, based on the 2020 census, only had a-thousand five-hundred ninety-one people. How did you do outreach to gain program participants in these small communities? 

Dr. Monteleone: Yeah, so like I said, the kind of initial goal of these workshops was to really bring the storytelling opportunities to some of our kind of most rural and underserved areas in Ohio. 

And so this is a really great question. We've been really, really lucky in that this wasn't just a grant from the DD Council. This is actually something that the DD Council decided to run in-house.

And so we've had all of the logistical support from the staff at the Ohio DD Council, led primarily by Rebecca Bates, who has done a ton of outreach work and logistical work. And, you know, something that we talked about with these summer workshops was making sure that we were doing these in public spaces. Right. 

So the idea here is that these are stories that belong to the public, right, that we shouldn't be kind of hiding away and segregating these workshops. And so we would do things at the public libraries or at community gathering spaces or things like that. And that was really intentional.

And so having the DD Council staff being able to do a lot of that logistical work. And then in addition, of course, the DD Council has relationships with all of the county boards, with many of the self-advocacy groups. And so that they're already kind of a known entity to people all around the state. 

That really helped, I think, with the recruitment piece of it. And then the other thing I thought was really important here was that what we found was that people were driving an hour or two hours in order to come participate in these workshops. And so there is a huge thirst for this kind of work in Ohio.

And so we were finding was it wasn't hard to fill these workshops. Right. People were signing up.

People were driving long distances in order to participate. So what that points to me is that we need to be doing more of this. That is so great, especially when people are driving two hours, you know, they really want to participate.

Shari: What differences did you see between county and town outreach participation within the disability communities? 

Dr. Monteleone: Yeah, I mean, I think this is a good question, and I don't know that I have like data that could back up the differences between the sort of different areas of the state that we visited. But just like some of the things that come up for me, you know, some of the workshops, it would be, you know, half the people who participated were all from one self-advocacy group and they all just came together. Right. 

And then other workshops would be people who didn't know each other. A bunch of people who didn't know each other and were meeting for the first time.

And so there was some really interesting dynamics between people who, you know, maybe you had been in a self-advocacy group together for years and you felt very comfortable sharing with each other versus people who'd never met before because you're from six different counties and you'd all just congregated in this space for the first time. And so I think the thing that sticks out to me is is the way that people get to kind of share across new groups of people. And that was that was something that was really interesting and exciting to see.

And then, you know, some other things I noted were sometimes the topics that people would choose to tell stories about would line up with each other. Right. You know, if we had seven people, maybe four of them would tell stories about a home or stories about work or stories about transportation or something like that.

Like maybe there was something there were some shared experiences. But, you know, what I also saw was that there's a full range of stories that get told right about love and about loss and about grief and about, you know, successes. 

I mean, so the kind of diversity of stories, I don't know that I could identify that that's like county by county based. Right? 

But there are so many different stories that get told, you know, and I think they're all equally important. Whether it's a story about moving on your own for the first time and the challenges you face doing that or a story. There's a really great story that got told about throwing a really great party, you know, and I think that those are equally important, especially when there's there are so many myths and misconceptions that exist about what it means to have a disability.

And so having that kind of wide diversity of stories, I think, makes a big difference. 

Shari: I would think it was a lot of friendships developing, a lot of comradery developing. Can you give me a story of maybe a friendship or a relationship or maybe advocacy group that developed out of my life, my story? That's a great question, too.

So I think the whole workshop is set up to be mutually supportive. I mean, Alicia can speak to this, too.

We were in a circle all day. And we start by just kind of setting some ground rules about how we're going to respect ourselves and each other.

And that's where we start. And so even when you're kind of strangers at the beginning of the day, spending seven hours talking about things that are vulnerable or are hard to share, you know, you start to form relationships. Right. 

So I think about the ways in which people will sometimes share difficult stories. So, for example, there are stories about people getting cancer diagnoses or things like that. And so there's often, you know, tears in the workshops.

But seeing people who just met that morning providing, you know, both kind of physical comfort coming up and patting shoulders or supporting people as they're reading or those kinds of things, you know, seeing those kinds of supportive relationships develop, I think is it's really cool to see. And Alicia, I don't know if you want to speak to that at all either. 

Alicia: Yeah, I wanted to say that basically the way the workshop was structured, like we were in this circle, and at first, like the one I was in, I did the one in Brown County. And at first, people were really shy and everything. But then, like, as the day grew and we were able to basically give each other feedback on because we had time to practice our stories before we performed them.

And we were able to basically have honest feedback from our peers, which really helped us and like even suggestions on how we can do it a little better, everything. And it seemed like the more we got feedback from our peers, it also the more developed our stories got. Like, I watched one person who the very first practice, they got up there and it was really short.

And then they got feedback to watch others and their confidence grew. And that's the same thing that happened for me as well. Like, I was at my very first time practicing, I was really nervous and everything.

And then, like, I basically, I found more confidence, the more that I performed my story. Just, you know, I got to do it three times before I gave it in front of the audience. So that helped.

And just that feedback, you know, everything really helped. 

Shari: And I think you just answered the question, how has My Life. My Story. helped you and others? 

Alicia: Well, I will say this, that My Life. My Story. helped me in a very unique way. So I'm an artist and I also am an author.

And this summer, I published a book. And so this event actually helped me to be able to... My Life. My Story. actually helped me advance my career goals and my employment goals in such a way that when I go to talk about my book, I can be more direct about it and be more in depth. And I've done a couple like virtual events.

And it's like, I remember the things I learned in the workshop and I was able to take and apply to like things I'm doing with my book and other employment related things related to the arts. So it's kind of helped me be more in depth with my storytelling. And also, you know, when I'm planning for workshops and things I'm doing with other people.

So I think it's really helped me advance in my career goals. But also, it's also helped me to be, like, if I'm trying to talk to my staff, it's helped me be more detailed about what I need and everything. And it's given me a better ability to ask for help in certain situations.

Because and it's helped me know that people do want to hear me and do want to listen and actually really want to hear what I have to say. 

Shari: You keep saying "my book, my book!" You must give a shout out to your book. What is your book's name? 

Alicia: So my book is called Audacity to Speak. And it's about my advocacy story. And I talk about growing up with a disability and growing up with a parent with a developmental disability and what it was like and different laws like the ADA and what some of the social service programs are about.

And it's also about basically talking about social determinants of health and health care access in Ohio and talking about what the care crisis is like, has been like and how even though we had this pandemic and everything, you know, the world was shut down. But our advocacy community thrived off of being able to connect through virtual platforms and, you know, every way they could during the pandemic to advocate for disability rights. 

Shari: Sounds like a great book, Alicia. But people at home want to know, where can they get this book at? 

Alicia: So it's on a website called poetryislifepublishing.com. And it's not poetry. It's full of nonfiction, but yep. So it's available through poetryislifepublishing.com. I can send you the link if you want.

Shari: Okay, and please do. And we will put that in the link so people can get the book. It sounds very interesting.

I have another follow-up question for you, Dr. Monteleone. You say audience, You're speaking in front of an audience.

Where is this audience coming from? Are you putting it on Facebook that you're going to have an event? How are you finding these audiences? 

Dr. Monteleone: Yeah, so it depends on the workshop and it depends on the county, kind of how much advertisement there is. So we have the schedule for the day where we start at 10 and by 4 p.m. we're having this public performance. So we start in a circle, but then we transform our space out into a stage, right? And we set up chairs for an audience.

And so sometimes it'll be that, you know, definitely there's social media posts that are going out from the DD Council, but also from the local county boards. We also, if we're in a public space, like a main street or something like that, we also just have signs to welcome people in. Like I said, we do these sometimes at the public library or at a community event space or those kinds of things.

When we went to Ashtabula County, they advertised really heavily that there would be a performance and they were going to have a reception afterward. And so that ended up having a crowd of, I think, like 35, 40 people coming and watching those final performances. And then we also film all of the stories.

And so those are then edited into videos that then can be shared with whomever and wherever. But I saw Alicia, you wanted to add something too. 

Alicia: I just want to say that it was really, it was a really great experience to have, like, both strangers and, like, people that support us on daily lives, like my direct support professional.

He was there helping me while I was in the workshop some, but he also helped me, you know, he was like really excited. He actually took a video of it and sent it to me. And he was like, he sent it to all the staff because he thought that I did a really great job.

So it was really cool to have that, you know, experience where my direct support professional was there. And then, you know, he got really excited about it too. So then, you know, he could, you know, he was sharing with others.

So I think that it's, you know, I think that these events are important, you know, to have both strangers and people that don't know you so they can learn about something new, but also having the people that most support you too. 

Shari: And I know we will add a link so people can view some of these stories because they sound amazing. So we will have that in the link.

Before I get to my last question, do you plan on going to other counties? 

Dr. Monteleone: Yeah. So like I said, right now we're in this kind of second round where we're going to all the developmental centers. We also have, in the spring, a workshop that's planned just for Deaf-Blind Ohioans to do the storytelling workshop.

And then from there, you know, I'd love to see this program grow. We've gone to six counties. There are 88 in Ohio, right? And so, and you know, the thing that I think, you know, we never run out of stories, right? It's not that you do this once and then you're done, right? There are an infinite number of stories that you can tell.

So it's not like once you do it once, that's it. Your best story's gone. It's that we could be doing this over and over again every year and the same people could come back with different stories or we could invite in new community members.

And I just think there's a potential to grow and grow and grow. Alicia, do you want to follow up? 

Alicia: I just want to say one thing I loved about this workshop was that you could tell your story in the best way you communicate. So some people, they may need visual support or they might need something to hold while they're telling their story.

And so for me, it was a really great experience because I felt, I was excited that people honored, you know, my story in the best way I communicate. So allowing me to use art to communicate. And it was really nice because then, you know, watching myself on YouTube, I was like, I have something to really share with other people.

You know, hey, this workshop is accessible to you in any way you communicate. 

Shari: That is so cool. 

Dr. Monteleone: Yeah, I will say, I mean, we've had people use AAC devices to share stories.

We've had, you know, sometimes it'll be a person literally reading a script that they develop, but sometimes it'll be like, I'll interview somebody and they'll answer the questions that we've developed together. And that's how you share your story. And so I'm really glad that you pointed that out.

And I say, I mean, Alicia, I think when you participated in the workshop, you even opened that up. You expanded that even wider for us, right? Because you came in saying art is how I communicate. And so we were like, let's figure out how art fits into this model.

And so I want to thank you for expanding even kind of how we were thinking about this too. That is really cool because communication is key. No matter how you get it, it's still key.

Shari: So that's very good. For this workshop, are there any legislative goals, whether direct or indirect? 

Dr. Monteleone: You know, that's a good question. You know, like I said, I think that sometimes when we think about self-advocacy and disability, we can think about it a little too narrowly as like it has to have these legislative outcomes.

So I like the idea of there being kind of indirect outcomes from this. You know, particularly, I think just the growing presence of voices of people with developmental disabilities in our communities as like valuable community members, that itself feels like a movement toward more accessible and inclusive communities, even if it doesn't have kind of particular things attached to it. Now, of course, when people come into the workshop, some of them have really clear policy goals in their minds or things that they'd like to change through their stories.

You know, people who want to talk about, for example, mental health and developmental disability or thinking about housing or employment, right? So sometimes people come in with kind of some specific goals in mind, but I like to keep it as open as possible because I don't want anyone to ever think that the story that they want to share isn't important if it doesn't have a policy goal attached to it, right? So yeah, that's how I'd answer that. 

Shari: That's great. So we have come down to the last question of the day, which I would like both of you to answer.

So Alicia, you first. What does the funding from the Ohio Developmental Disability Council mean to my life, my story? 

Alicia: Well, I believe that the funding means that you're investing in people's lived experiences and the future of people with developmental disabilities because this workshop has real tools to be able to help someone learn to tell stories and to really share how they best communicate and share the more in-depth parts of their life. And so I think that this funding really allows people to learn real skills for communication and to improve their overall communication skills, but also improve relationships with people and to build more confidence in a person.

So I believe that the funding is really saying you're investing in people with lived experiences. 

Shari: Thank you, Alicia. Dr. Monteleone, I'm going to pass it back to you.

Dr. Monteleone: Well I mean, I love what Alicia said: investment in lived experience, I don't know that you can say it better than that. But, I mean, I think that in addition to just the funding  the institutional support that we've gotten from the DD council, the logistical support the fact that people just know what the DD council is across the state, and that immediately makes people are more eager to participate in a program like this. It wouldn't be possible, right? This is way beyond the scope of anything that I ever imagined when I started doing these storytelling workshops. And so, you know, it just wouldn't exist, right? The DD Council are the ones who proposed the idea of taking this across the state, and then we developed the program together.

And so I think there's a clear investment in getting these stories out into the world that I'm so grateful for. 

Alicia: Can I say one more thing? I just want to say that I'm really excited that you chose to go with rural communities. I grew up in a rural community, and now I live in a suburban community.

But having grown up in a rural community, it really means a lot to me, because there's not many programs that exist in rural communities for people with developmental disabilities. Like, the opportunities are very slim. And, you know, I had to move to, like, a suburban community to just find, you know, to be able to get the supports I have today.

So, and I hope that you take it statewide. But I'm grateful now, like, for your willingness to invest in rural communities.

Shari: Hey, thanks for listening to another fire episode of Ohio DD Talks: Ambassador Edition. And a big thanks to our guests, Dr. Becca Monteleone and Alicia Hopkins. You can learn more about the workshop on our website at ddc.ohio.gov. 

Oh, and one more thing before we go! 

The Ohio DD Council is collecting stories to highlight on our podcast. You might even be invited to appear on the series! Are  you interested? Complete a short online form using the link in our episode description. We can’t wait to hear from you! 

I’ve been your host, Shari Cooper, and I'll see you in the new year. I’m out!