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Rachel Cronin is the assistant director of the UVM Center on Disability & Community Inclusion, and in this episode of Green Mountain Disability Stories, she interviews Persephone Ringgenberg, a self-advocate and artist living in Vermont. They talk art, legislative support for disabilities funding, and whether or not to eat the gluten-free desserts.
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A full transcript of the episode appears below.
Rachel Cronin: Hi everyone, and welcome. My name is Rachel Cronin. I’m the assistant director for the Center on Disability and Community Inclusion here at UVM, and today I’m going to be talking with Persephone Ringgenberg. Persephone, do you want to introduce yourself for the podcast?
Persephone Ringgenberg: You just introduced me.
Rachel: Tell us a little bit about yourself.
Persephone: Hi, I’m Persephone. I don’t really know what to kind of say to introduce myself.
Rachel: So we had you on the podcast today, Persephone, because we’re talking to people in the community who are self advocates. Do you consider yourself to be a self-advocate?
Persephone: A freelance self-advocate, yeah.
Rachel: Tell me more about that. Freelance? What does that mean?
Persephone: I’m not tied down with any organization.
Rachel: Sure. And… what are your kind of hobbies and interests or like what brought you to the field of self advocacy?
Persephone: That’s a good question. I took a leadership course and I learned how to advocate better. I strongly advocate for people with epilepsy and the mental health community.
Rachel: So is that because you have experiences with that directly?
Persephone: Yes.
Rachel: (You’re petting your dog, right? Yeah. I just want to make sure, because you can’t see the dog in the video. And I just want to make sure people understand what you’re doing.)
Persephone: Yes. My dog is right next to me.
Rachel: What’s your dog’s name?
Persephone: My service dog, Willow.
Rachel: So you said you took a course in self advocacy or how to be a better advocate. Can you tell me more about that course?
Persephone: It was one that was put on through, I think it was partially through Green Mountain Self Advocates. And then I think I’m not sure if Developmental did it– was part of it as well. I think Family Network was part of it.
Rachel: Vermont Family Network?
Persephone: Yeah, I think they were. So.
Rachel: What do you think are the skillsets, or what kinds of things do you need to have to be a good self advocate?
Persephone: I think know yourself and know what you’re advocating for. Um, case in point, I worked with McLean Hospital on their– the stigma for mental health. Like so finding different avenues in which where exactly you want to advocate, and finding partners to work with, really.
Rachel: Tell me more about your work with McLean Hospital. What’s that for? What did you do?
Persephone: They did pictures and descriptions in Boston and then they were doing– they were looking for other ones. And I think it might still be up here at the Burlington International Airport. But they took a picture and they got a description of like, my mental health and like quotes from me.
But it was an installation show with pictures and like quotes. And then you could scan them, and read somebody’s story. And they even had some famous people like Howie Mandel and his OCD [Obsessive-Compulsive Disorder].
Rachel: That’s interesting. So you’re a little bit of a local celebrity at the Burlington Airport.
Persephone: Yeah. So one of our trainers, she was like, “How did I not know you’re this cool?” And she sent me a picture, but then from a client, I’m like, yeah, I’m that cool.
Rachel: Can you tell me more about what the picture or the story was that was associated with it?
Persephone: Well, the picture was me up at Scout & Company [a local coffee shop] because I used to hang out up there and they were generous enough to let us do a photoshoot up there. It was the first and only time I had a professional photoshoot. And it was actually… they interviewed me when I was in the middle of a manic episode / coming out of a manic episode. So they sent me the piece and I was like, “No, that’s not what I wanted.” So they re-wrote the piece so that it came out the way I wanted it to.
Because my main quote is like, ‘I feel like I fall between the cracks, like I’m one, one foot in and one foot out.” Like I’m partially in the medical — I don’t fit in one area or the other because I feel like I’m higher functioning than other people with developmental, and I fall through the cracks of the mental health. So.
Rachel: So you’re drawing attention to those issues maybe in our…
Persephone: More in the mental health, yeah. That falling through the cracks. That… I am a very strong advocate for mental health and I find for myself that I’m more compassionate when I’m having a mental health crisis towards people with mental health. And not to say that I’m not compassionate to them when I’m not, but I’m more like, open to being caring and… just caring in general than I am when I’m not– when I’m just like, another person struggling.
Rachel: I think it’s definitely true that it can be easier to have empathy for people when you’ve gone through similar struggles as them, right?
Persephone: Yeah.
Rachel: And sharing your story helps people who haven’t gone through those struggles maybe have more empathy because they can learn more about what that experience is like.
So, I know that you said that was your first experience with a professional photo shoot, but I know that we have some art hanging at CDCI…
Persephone: That wasn’t my professional photography, that was somebody that was my mentor when I first moved up here and was in SUCCEED. [The SUCCEED Program at the Howard Center.]
But the path to Inclusive Arts exhibits or exhibitions I’ve been in? The first one I had a photo in and the second one was MASKS. I had an abstract painting. And I’m applying for the — it’s their fifth one, but it would be my third one if I got in — which is CYCLES. And I’m hoping to have a set of three pictures to go into that one.
Rachel: Tell me more about your art. Do you mostly do mixed media or do you do photography or mixed media?
Persephone: Yeah, mixed media; a little bit of everything. Like, depending on what I feel like is easier for me. I do photos because it’s a way for me to just remember and express myself and how I see the world. I have been painting since I think 2020 or 2021, maybe because of the beast I have here. *indicates service dog*
I just haven’t had the time. She takes up all my time.
Rachel: Willow, you mean?
Persephone: Yeah. Her nickname is Beast, or Wildebeest.
Rachel: I think I’ve met Willow, because I think you came into the hall when I was there. With Willow. She seems very sweet.
Persephone: Yes, well, she can be sassy. She’s very sassy.
Rachel: So you’re hoping to have a display in the next Inclusive Arts gallery exhibition? Cool. And you said it was called CYCLES?
Persephone: Yeah.
Rachel: Do you know you know what the theme is or what that means?
Persephone: Oh, that is the theme. That’s the title of it, is CYCLES. So that’s the theme. So whatever people interpret it to mean.
Rachel: Do you know how you’re interpreting that yet?
Persephone: Oh yeah, I’m doing physics.
Rachel: Oh!
Persephone: The first time I entered, I use photos from the fair and this time I’m I am also entering photos from the fair of hair suspension?
Rachel: Oh, interesting. Tell me more about that. I don’t know that I know what that is.
Persephone: It’s where people are hanging from their hair. It’s tied or pulled up and there’s I think carabiners in there and they’re hanging from their hair.
Rachel: Whoa. That must have been cool to see. It sounds kind of scary.
Persephone: So the different positions that they were doing.
Rachel: Yeah. And then you said you did a submission for Inclusive Arts for their MASKED stuff. Can you tell me more about that?
Persephone: That one I’m also waiting to hear whether or not because Barre’s HireAbility was interested in my piece so I haven’t gotten it back, but it was an abstract painting called “Panic”, which I did like right at the beginning of the pandemic.
Persephone: And it was funny because I was paying attention to the news and I was like, we need to stock up on stuff.
And my mom was like, “Oh, no, it’s not going to be that bad.” (The pandemic. *laughs* “We’ll be fine.” And it comes up to be like four years later…
Rachel: I think it was it was much more intense than a lot of people expected.
Persephone: I know! *laughing* My mom was just like, “No, it’s not going to be bad! Why do you need a mask, and all these different things?”
Like are you not paying attention?
Rachel: Yeah, I know before COVID had really come to the United States, there was some there was some messaging going out that we shouldn’t be wearing masks because we want to save them for the health care providers, right? And how quickly that changed to be like, “No, no, no: everyone should be wearing masks!” Right?
Persephone: Yeah. Like, I was like staying home. And the first mask I actually got was from an acquaintance/friend of mine. They were, like, asking “Who needs masks?” I paid them, and that turned out to be too small. And then I got some other ones. I had ones made that my dog tore apart. Once I got her, she took out the things. Yes, she gets into stuff.
Rachel: Wildebeest!
Persephone: I got some good ones. I got one that was a pit bull on the face. And then I had one that said, I’m sorry I am rusty on my people skills.
Rachel: I think we all got a little rusty on our people skills.
Persephone: So I thought it was just perfect for me because I’m rusty on people skills anyways.
Rachel: *laughs* So do you want to talk about how you feel about mask mandates now, at this point in the pandemic?
Persephone: I respect people that wear them. I just get annoyed with people that are like coughing and hacking on the bus and just not covering their mouth.
Rachel: Yeah, yeah. I know that there was some thought that maybe this would be kind of a culture shift where people would, if they were feeling sick or had a cold, but it wasn’t that bad, if they had to leave their house, they would put a mask on like that. Makes sense, right?
Persephone: I especially since I have family that are are have autoimmune disease. So like they have to wear masks.
Rachel: And so the painting you did for inclusive arts that was called “Panic”. I was trying to find it so I wanted to see a picture of it while you were talking.
I like that! I can see why you would call it “Panic”, too. I really feel that.
Persephone: Yeah, I’ve got tons of photos for sale. Most of my paintings are for sale. They’re one of a kind; it’s sort of like my journaling.
Rachel: How do you sell them, Persephone?
Persephone: People can buy just buy them from me.
Rachel: Like from your Instagram?
Persephone: Yeah. Well, they can contact me. The old receptionist at my doctor’s office wanted a piece of my art. And so I brought her one and she gave me a check for it. And she’s like, “You should peddle around the hospital with your art!
Rachel: Yeah! Get a little cart.
Persephone: Yeah! Like, I made a piece for my neurologist of neurons. Abstract of what I think a neuron looks like. And I gave that to him. And I’ve got to give him another piece of art for his retirement next year.
Rachel: That’s nice.
Persephone: So yeah, just contact me. And they could maybe Venmo my mom or. Yeah, I have a Facebook, but also Instagram has the pictures. Just let me know which ones you want and I could print them out.
Rachel: Do you want to share your Instagram handle for people?
Persephone: Oh sure! It is @worldthromyeyes. And that’s all one word.
Rachel: I’ll find you and follow you. So when is the exhibition for CYCLES?
Persephone: 2024.
Rachel: You know, at the beginning of the pandemic the Vermont Tent company had a bunch of tablecloths that they were donating to people who would sew them into masks, and I ended up picking up tablecloths and sewing masks for people. What a crazy time.
Persephone: I cooked a lot. I baked a lot. During the pandemic. I would go home because there was no respite or staffing. So I would go home and my mom ended up getting paid for that time. They were doing that time. I think it was [inaudible] or the government was doing like because families were being paid for that, for taking care of their children or their family members that were not getting services.
So I would go home and this was before [my mom] moved to her new apartment. This is when she was in what we consider her mobile home. Even though it was stationary.
And I baked brownies, baked I think was pound cake or something? Yeah, I think lemon poundcake. Um, cookies, all sorts of different things. And I was just like whipping it up: like each day a different thing.
And I only did it with the help of my mom because I’ve lost my cooking skills and it was a progressive thing. This is why I advocate for epilepsy. And I’m very I’m trying to be as much involved with Epilepsy Foundation as I can, due to my seizures.
And it wasn’t like one seizure did this, so it was like a progression of it.
Like, I’m afraid I’m gonna have a seizure in front of the stove and burn myself. I can’t cut anymore. And I’ve lost other skills. Like I used to cook a lot and make different things. Now I don’t do it.
Rachel: That must be hard.
Persephone: It really is. Like I found joy in it. I went to technical school for cooking, and now all of those skills are gone.
Rachel: I’m sorry. So it was a pandemic hobby of yours.
Persephone: It was. Yeah, it was a fun pandemic. I made some gluten-free stuff for people that really enjoyed it. My uncle is Celiac, so we made him some using King Arthur Flour and made him lemon-raspberry — no, it was just lemon poundcake and brought it down to him.
Rachel: I also am gluten-free because I have an autoimmune disorder and I love baking. And King Arthur’s Measure for Measure flour is such a good substitute.
Persephone: I’m supposed to be gluten-free, but… I’m bad.
Rachel: It’s too hard to give up bread.
Persephone: Once I had surgery, I was just like, I can’t. I can’t do the gluten free stuff. It’s too hard to do it. So I just went back to eating gluten because, like, I have the celiac gene, so I’m playing Russian roulette each time I eat gluten. Like: “Am I going to get celiac disease? …Snake Eyes!”
Rachel: You know, I think that makes sense. Actually. My, my dad says to me, if you already have to give up things, like if there’s already things you’re missing out on for one reason or another for health issues, don’t give up anything else that you don’t have to give up.
Persephone: So my uncle, he says he thinks of gluten as poison? And don’t waste it on like McDonald’s or something. If you’re going to eat gluten, eat something that’s really good.
And I was just like: I screwed up. I should’ve chomped down on that when I was in Disney. Because we went to a really expensive place prior to the fireworks. We went we went for my niece’s fifth birthday last year, and the only thing that was good on my plate was the butterscotch pudding. Everything else was horrible.
And I asked my mom, “Were your guys’ desserts good?”
And they’re like, Yeah.
And I’m like, “Mine was horrible! I should have cashed in on the gluten if we were to pay that much.”
But yeah, my sister and my mother on our last day in Disney when we had dinner together, at a diner, they were like, “Those are some expensive mashed potatoes.” *laughs* Because that’s all I was eating. I couldn’t find anything on the buffet that I wanted. Except for some broccoli raw. And then I discovered the pork belly. I was like, These are good, but nothing else.
Rachel: That’s funny. I do say when I’m traveling, but I allow myself to to eat gluten because I’ll never be able to get that stuff again where I’m going, you know?
Persephone: Oh, yeah, Well, I know my gluten fix is to get Condon’s donuts when we go to Maine. Although their gluten-free ones are pretty good too, but their donuts are… *makes happy noise* It’s a family tradition to always go there. At the diner.
Rachel: Are they potato donuts? Is that the thing in Maine?
Persephone: I don’t think theirs are. These are homemade donuts and they change their hours for off-season; it’s different than on season sure but they’re open like 6 a.m. to 2 p.m.
Rachel: Wow. Sounds good. When are you going to Maine?
Persephone: Next? Next month. Not next week, but the following week. So. And then I get to have clam chowder. *happy noise*
Rachel: *laughs* You a big clam chowder fan?
Persephone: From Maine Diner. Yes, I could eat the whole thing by myself.
Rachel: I’ve never been there.
Persephone: Oh, I love it.
Rachel: We are meeting this week, I think, for the Community Advisory Council. But you’re not going to go.
Persephone: No, because I have staff in the morning and then I have staff right after that. So.
Rachel: Busy day.
Persephone: Yes, busy, busy day.
Rachel: What do you mean when you say you have staff, what do you do?
Persephone: Um, I have community support staff. So, like, I go out in the community.
Rachel: What are you going to do this week?
Persephone: Um, well, I’m supposed to have 15 hours, but we haven’t found anyone to fill them, so it’s sort of like I have a sub-staff and then I have ones that I have four hours a week. So 2 hours today and 2 hours tomorrow.
Rachel: And was that just like, totally gone during the pandemic? You didn’t have that support at all?
Persephone: Yeah.
Rachel: And have you found post pandemic? I mean, we’re not post-pandemic, but…
Persephone: It’s hard, like they still haven’t been able to fill the position. I have a friend that will get paid to hang out with me because they know like they can do as many hours, but they also have work and family to do time with me because I’m not getting my hours. It’s like a backlog of hours that I have.
Rachel: There’s just a real staff shortage. Is that it?
Persephone: Oh yeah there’s a there’s a meeting my mom has been going to with Jen Garabedian, too. I love Jen. She’s one of my sister’s best friends. And she’s known me since I was a little kid. And she’s working with people to try to figure out the staff shortages.
Rachel: Do you feel like there’s some light at the end of the tunnel for that?
Persephone: I have no idea. Like I have one good staff I like. But I had to let I let go one another stuff because they were not helpful.
And then this one, it’s sort of like, they sort of put me with people like in the afternoon, even though afternoon’s not the best time for me.
Rachel: That’s challenging.
Persephone: Yeah.
Rachel: Do you feel like that’s unique in Vermont or do you think that’s a problem everywhere?
Persephone: Well, that’s the thing is: I put things on my Facebook, and there was one state there, there’s such a backlog of care for individuals that the state is like at its max of people that they can take in.
And so like other people are like, well, what about us?
And then their parents are having to take care of the children with severe disabilities.
And then there was one where it was lucky enough — I think they’re adult, but I’m calling them a child, because to me, I’m almost 40, so everyone’s a child. *laughs*
So they were lucky enough to get a support for them so that they could get a job and help them at home.
But like other places, they’re still like, “What about us? I can’t be watching my child 24/7, I need to be working.”
And so it’s just like, yeah.
Rachel: Do you think that that’s part of your self-advocacy right now is to try and help people understand that?
Persephone: My advocacy is like I tried to have a meeting with our old lieutenant governor and he compared mental health, like putting funding into mental health as it’s either that or clean water to do. His analogy was just like two different things that had nothing to do with each other. And it was just like talking to a brick wall. Like, I’m asking for funds here to help people that were slipping through the cracks. There’s not enough support.
There’s support for people with addictions that have mental health, but not somebody that just has mental health and mental health crisis. There’s no place for them to go.
My mom was with me right there when I was vocalizing this, and she’s just like, “…Really?”
Rachel: That’s hard.
Persephone: Like really, there needs to be more. There’s not enough funding for people to support us.
Like, I brought that up and he’s just like comparing it to water and stuff like that and like we need there’s already so little funding going into the to Howard and into the mental health stuff and they’re trying to squeeze it out and you’re trying to take out even more.
Rachel: That’s true. Yeah. I mean, I understand that there’s probably lots of priorities when you’re running a state, right? There’s lots of things that people need to focus on, but it’s the job of our elected officials to balance that and find support for the things that need it. Right?
Persephone: Yeah. And listen to listen to their patrons or so people.
Rachel: Yeah. Their constituents.
Persephone: Yes.
Rachel: So, yeah, it sounds like we’ve got some time to get get people to start advocating for Vermont law reform or reform in our state to have more funding for mental health issues.
Well, it was really great talking to you, Persephone. Thank you for recording this podcast with me.
Persephone: You’re welcome.