Season 5 Episode 2: Undoing Narratives and Being-With Carly and Todd

This is Episode 2 of the Mad and Crip Theology Podcast! Miriam and Emma join Todd Dias and Carly Jazbec to talk about each of their creative works in the latest issue of The Canadian Journal of Theology, Mental Health, and Disability. 

Todd's piece is titled "Being-With-Diversity: Tending the Garden Together" where he talks about his experience of schizoaffective disorder, diversity, and incarnational and covenant theology. 

Find Todd's piece here: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/46688 

Carly's piece is titled "Learning to Undo" where they talk about their experience of anorexia and psychiatric survival. 

Find Carly's piece here: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/46681 

For an video version of the podcast click here: 

https://www.youtube.com/watch?v=4jWQWV9MTJY 

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Transcript

Welcome everyone to the Mad and Crip Theology Podcast! I am the new co-host. My name is Emma CW Ceruti. I use "she/her" pronouns. I am a short white woman with short brown hair that's very much going grey and white. I'm wearing a blue top and some pearl hoop earrings and I've got pink glasses. I just completed my PhD at the University of Toronto at Emanuel College in Theology and I'm very much excited to be part of the journal and now the podcast and hear from each of you and your contributions. I'll send it to Miriam and she'll give another brief introduction of herself.

Hello, I am the co-host and co-editor and today I'm wearing a maroonish long-sleeve shirt with my purple and pink glasses. I have short blonde hair that's turning a bit white in places and I'm sitting in my power chair and I'm delighted to be in conversation with Todd and Carly. Todd, can you introduce yourself first? 

I'm Todd Dias. I'm mixed heritage, so I have whitish skin but brownish interior, whitish/blackish hair, which is becoming more white than black these days. I'm wearing glasses and a sort of a cute little largeish nose and headphones and a blue top. My pronoun are "he/his." 

Thank you. And Carly, can you introduce yourself? 

Yes, thank you. My name is Carly Jazbec. I use "they/she" pronouns. I'm a Canadian but from European descent. So my grandparents moved here back in the early mid-1950s. And I have white skin and I have hazel eyes and pretty short brown hair. And I'm wearing sort of a green top with purple flowers on it.

Wonderful. We'd love for you each to tell us about the piece that you had in our in the journal. So, Carly, can you start us off? 

Yeah, for sure. I can start us off. The piece that I have that I submitted for the journal is called "Learning to Undo." It's a creative piece that I actually wrote for one of my classes. I'm completing a Master's of Psychospiritual Studies at Emmanuel College. And so the class that I was taking was called "Mad Studies, Neurodiversity and Disability." This was one of my pieces of work for that class and it's a creative prose along with somewhat of a creative artist statement where I privilege my experience and then speak to the theoretical background in which it is grounded in. And it looks at my experience being in the medical system with anorexia and learning to undo a lot of the narratives that I internalized both during and both prior to being diagnosed with this kind of label, being in that treatment space, and moving away from that space. That's a pretty I think expansive way to talk about my work. 

Thank you Carly. It's so important and we look forward to digging into it more throughout this hour. And Todd, can you tell our viewers and listeners about your piece in the journal? 

Yeah, it's kind of hard because it comes from a lot of different places. It comes from my own story. It comes from the research that I did just trying to understand who I am and where I come from and where I'm going. And it started off as an argument because I was very ill with COVID actually. And I was talking to somebody online and said they said, "Oh, well, all you need to do is be kind to people." I said, "Well, that's kind of a not very nice way of putting it away." I mean, it's nice in the sense that, you know, all you have to be is nice, but she said something about like just obeying God and being nice to people. I said, "That's not very helpful to some people because some people don't believe in God. Some people don't believe in this. They don't believe in all this stuff." So, I said to myself, "what is it do I believe and what is it and where does it all come from?" This is where the peace comes from. This comes from a place of healing and that kind of thing.

Thank you both for describing a bit and I'm excited. We have a few questions for each of you to get into your pieces in more detail. We'll start with you, Carly. And we're wondering if you can read the piece for our listeners and as you after you read if you reflect a little bit of what feelings and thoughts bubble up for when you read it now. 

Yeah, for sure. I think I just want to ask a clarifying question about that. So, just the creative part, not the artist statement? 

Yeah, that would be fine. 

Okay. Wonderful. Wonderful. Yeah, okay. This is a quite vulnerable piece, so I am a little bit nervous. I think I just wanted to voice that a little bit before I I actually go into it. So, the piece is called "Learning to Undo":

"Stuck. I am scared,
Afraid of failing, afraid of doing bad.
As if my work dictates whether I am good or bad.

Teetering along a thin barbed wire, darkness on either side.
I do not dare slip into the abyss,
The irrational unknown.
“Stay on the line; don’t fall off...”
I stop breathing.
My body is frozen.
I can’t move forward; 
What if I slip?

Every ounce of energy has to be directed on the goal.
A delicate placing of the foot while I hold my breath...

Phew. 
The tightrope sways an inch,
I clench,
afraid to make another move.
I have to prove that I am okay, that I am normal.
I can’t fall off.
I am not mad.

—

A flash remembering,
I have to own my crazy part. She is me.
I have to see the inherent goodness of my entire self.
Every part needs space on the stage, otherwise the production becomes disordered.
When we shun and silence parts of ourselves, we act crazy.
Or at least I do.
My coping mechanism was not eating; I fell ill with a plethora of psychotic behaviours that were deemed not normal.
Eyeballed with disgust and disdain, like a freak in the circus.
“How could she do this to herself?”
As if anorexia was “my choice,” a rational decision.
Yet another thin white womxn with hysteria, gone mad.

How do you reverse madness and return to normal?
How can we fix you to fit back in the system?
Isolate in hospital rooms, force eating and teach how to tolerate distress by collecting the evidence refuting your feelings. Learn another way to invalidate yourself.
Bippity boppity boo along with a dose of Seroquel.
Sigh. The absurdity of it all.

I'm trying to tell you my experience of being mad without you thinking that I’m CraZy. I envision a piece of writing that has all its i’s dotted and t’s crossed, then it will be valid. If I present it in a way where it’s nicely wrapped up in a bow, you’ll get it, you’ll understand because it is rational, and it makes sense. I make sense.

The doctors explain my pain away.

Will you listen to me if my story doesn’t make sense? Will you believe that it is true?
Please sit with me in the dark.
It’s lonely here.

How could I let things get like this? How come no one asked if I was okay?

No need to burden anyone with my feelings, I’ve got them under control.
Like any other sane person. 

—

Here I go, thinking again, trying to force my words to come out in a succinct manner;instead of just exploring the thoughts and ideas, allowing them to be untamed. We don’t trim flowers when they’re sprouts, otherwise we wouldn’t have any flowers. I keep cutting down my garden before anything has a chance to grow. What can you cut down when everything is already dark, brown and wet? 
You don’t. The practice is to wait. 
I learned to bypass rest and went straight to digging.

What would it be like to lay in the fertile ground and let her hold you?
Step off the tightrope and be held.

The seeds start to sprout and are given time to bloom.
It is in the grace of slowing down that we see our abundance, the fullness of our very being.
Now, that’s healing: the undoing of all the labelling and the narratives they contain.

Sitting in the silence of being;

—

Sound logical, sound sane, the outer-inner dialogue beckons. I’m whirling again, pinching and prodding at my skin, searching for flowers in the dirt.

—

What do I want to tell you? What do I want you to know about my experience? I felt like a freak of nature with my diagnosis. Ashamed that I was different in this way, wishing I could be put back to normal. 

Will I ever breathe in the realms of what they call recovered?"

Wonderful. Thank you so much for sharing and thank you for sharing how that it's a very vulnerable experience before and I think if there were a lot of other podcasts that probably are not as vulnerable as this one. Thank you for so much for stepping into that. 

Yeah, thank you, Emma. Yeah, it's quite an experience reading it out loud to other people. I wrote this a year ago, just over a year ago, and things feel really different to be honest in a year's time. And I feel like I'm really glad I honored that part of myself. Like when I wrote this, I felt I actually felt rightfully rageful, I think, because I was really mad at the system. I felt like I had to grieve a lot about the things that I missed out on because of the way the trajectory of my life went. And you grieve what you've missed out on, what you feel like you should have received, and then what you didn't and what you did receive instead. Even though at that time I felt very kind of angry and like really wanting to share what it was like, now I feel very different about this piece. I actually feel more grounded. I feel much more like that part of me really got to speak their truth. And some of the questions that I wrote in here almost feel that it doesn't matter anymore. Like the last line, like will I ever breathe in the realms of what they call recovered? But like to me, it's not about what other people say recovery is anymore. It's about how do I show up as who I am and own that and be unapologetic in who I am and how it came to be and allow that to kind of flourish. Yeah, I think that's's enough for that one. 

That was beautifully said. And what I hear you saying is actually something that's in the poem. The line that struck me is "it is in the grace of slowing down that we see our abundance." Perhaps, when you slowed down to capture your anger into words and to process that that yes, of course, you feel different now because of going through that process and feeling all those, feeling what you felt in the moment. 

Yeah for sure. The slowing down is really important. I practice in the Plum Village tradition, so a mindfulness meditation is quite a big part of my spiritual practice. Being able to sit down and see and listen and feel what's arising feels like an important point to allow the process of change to take place for something to decay and something new to come about. 

Wonderful. Yeah, so I'm going to move to the next question. Miriam was going to take that one, but she mentioned just before we started that someone might be coming to fix her wheelchair and they picked the best time I guess to right when we're recording. But that's okay. I'm glad she's getting that taken care of. I'll go to the next question. This is still for you, Carly. We were struck by the line about "undoing narratives" and the title of the poem is "Learning to Undo." And I want to know if you can share more about that particular journey. And I think you've maybe started that kind of conversation, but maybe a bit more explicit. 

Yeah, for sure. "Learning to undo." There's been a lot of learning to undo and I think probably the last five years has been where the most of that has occurred. And what I mean by "learning to undo," I'm learning to undo the labeling and the narratives that have kind of been placed on me that I've accepted without necessarily critically thinking about where they came from or what they mean. The example of just the term "anorexia," for example, is like, okay, there's a huge stereotype with that label. What that looks like, what that means, what that implies. And in some ways, I think I took that on without fully understanding my experience or how it came to be and what led to me coping with not eating and etc, etc. Taking the time to see where those labels have historically come from, where they like the mad woman idea, hysteria and like that being transmuted into different places when that was no longer an acceptable term and how we think about gender I think in that way too is very very clear. And so learning that, you know, those labels aren't actually who I am or what made my experience and getting to write my own story and see what are kind of the narratives that I want to live by. So if I'm thinking about the hysteria label, for example, that has lots of roots in colonialism. So the colonial mind is a big thing for me right now where it's like what is something that the colonial mind has taught me about myself and how do I want to undo that kind of narrative and what would that look like? So instead of like these people have power over me, it's like actually no, the power is within me and it is actually with everyone together and us understanding the diversity in which we exist and how things come to be given the relationships that we exist in. Yeah, I think. Does that feel like that's answering your question there, Emma? 

Yeah, definitely. Yeah, thank you so much. I was really struck by the word, your use of the word undoing. In my own work, I talk also about "doing and undoing," especially thinking critically of labels or systems that are thrust upon us. And so I think you articulated that in a way that also resonated with my own experience. Thank you Miriam for coming back. No worries. I'm glad you were able to get everything taken care of. 

Sorry folks. 

All good. 

Let's move on. We wondered if you can talk about this "soft witnessing" and how can and how do others join you in this "soft witnessing."

Yeah, for sure. So, "soft witnessing" for me I think is also part of the slowing down. Those are very connected for me. So being present with what's unfolding and allowing it to exist in its fullness without shutting it down and not, I don't want to say not feeling ashamed, but allowing whatever emotions to come up, so sometimes that might be shame, sometimes that might be guilt, whatever it may be, and holding it with love. Ultimately, I've learned through my journey that trying to shut down our feelings or whatever is arising and distracting or challenging the thought or whatever kind of intervention is more placed around like behavioural and thought stopping doesn't work for me and it might work for some people and that's awesome, but it doesn't work for me. So for me, it's actually allowing whatever it is within me to arise and have space to breathe and give it the care and love that it needs in order to transform into what it needs to be. So, that can be a practice I think that people can learn to do by themselves. I get it. It's really challenging to be loving and caring all the time. I think it's something that I work to do towards myself all the time and other people. And I think we'd all have to be in a state of nirvana or whatever your spiritual idea is of like that complete loving sense. So it's always a work in progress of soft witnessing and I think how people can join that is like being with ourselves truthfully and honestly. And I think working towards being vulnerable with people who can also be truthful and honest with each other can allow us to be witnessed in that kind of present loving space. That could be a therapist, that could be a partner, that could be friends. My practice involves community. So like there's always some kind of circle that there is that space available and I do think that's the direction that I want to go in and I hope the future also wants to go towards it because I have great hope that that's the way that we'll be able to have more harmonious relationships with ourselves and others. 

That non-judgemental. Yeah, thank you Carly. 

Thank you.

We'll give you a bit of a break for a few minutes and turn our attentions to Todd and hand it back to Emma too.

Yeah. Thank you. Todd, we were wondering if you could tell us about being a misfit, dreamer and a general outsider in your piece that you wrote. 

Yeah. I sort of wish I had put those words in brackets, not brackets, I mean quotation marks. At the same time, that's very much how I felt as a youngster. I felt like I was, you know, didn't really belong anywhere and I didn't really belong to any category that would fit neatly anyway because I mean having mixed heritage, it seemed like that and it's not like this anymore, but it seemed at the time that you had to fit in one, in this box or that box. And I even encountered that recently in ministry. I found that I had to put myself in one box or another. And I just decided not to do that anymore. I just decided not to do that anymore. I wouldn't go that route. I was protesting. I said, "No, I do not wish to be named any one thing or another in order to be educated about race. Thank you very much." But that's an aside. But like, I just felt like growing up I felt like you had to put yourself in one box another. I didn't fit very neatly into any any box. And it came to a head with mental illness because things didn't work. They didn't see didn't seem to feel like it fit. I liked science fiction, but I was afraid of aliens, for instance. I was terrified of this and that and yet I was enjoying it at the same time. You know, it was weird combination of things. So that's what I meant by outsider, misfit and dreamer. Dreamer part is more of a positive connotation of it all. Just like you know, being a dreamer. there's nothing wrong with being a dreamer. In fact, I wish there were more dreamers in the world. I mean John Lennon said I may be a dreamer but I'm not the only one. It was a great consolation in that. If he's going to say he's a dreamer, I could be a dreamer, too. But, the other parts, the outsider part, you know. I think there's always going to be outsiders to a certain extent, but the negative connotation to being an outsider is such a strong thing that I really wish it wasn't the case. I mean dreamers change the world and so do people who are outside looking in. So, they change the world, but they get such a negative stigma, don't they? Just a negative stigma of like, you know, you have to go through a living hell to find out who you are sometimes, especially if you have mental illness. And it's just that was my experience. And I thought like, you know, if I could help people get through that, I would. I would just like give up my own comfort. And just today, I just help others. Naturally, we want to do that, but I think at the same time, like there's a cultural thing where you know you got to stick to your own lane and you got to like just mind your own business and that kind of thing. I think if you just look around for a little while and see who's hurting and who's not hurting and who can help who can, who can't help and that sort of thing it would be a better world.

Indeed, thank you Todd.

In your piece, you talk a lot about God being with us. And the incarnation of God, the God that is with us. We wondered if you might talk about how thinking of God "being with" shapes the communities being with each other. How are we able to be with each other?

And I was thinking about this yesterday how to articulate what I think about this. I think of spirit as being like a flame, a single powerful nurturing flame that gives light and warmth to which communities and when it's working it's really working. And it's like a community that has a hearth that's at its center, you know, like the the fireplace that's full of life and food on the table for everybody to eat. And when it's not working, that fire is out. And I mean, we may talk about religious inclusivity and we may talk about the right language to use around this stuff, but if the spirit's not there, the spirit's not there. I try to foster that spirit a little bit in my own life just by reminding myself that I am still loved even despite all the stuff that's going on in my life, you know, like just I'm still loved. I show I try to show that love to everybody around me too. Because I think it's important to pass what you've been given because so many people don't have anything or they have it but they don't see it.

Wonderful. Thank you so much for sharing what that means of God "being with" and how that shapes our "being with." I wonder also we were intrigued by your suggested questions. At the end, you have three questions and in particular the last question, "how can you tend to the garden where diversity grows? In other words, how can you nurture your own diversity and that of others?" And we want to turn the question to you, back on to you. How do you nurture diversity yourself?

Yeah. It's a hard question because, you know, for me, it's a double-edged sword because like I want to do more, but I'm afraid to go out in the world. Like my anxiety makes me so that I have a hard time just getting out the door. And yet, when I'm out in the world, I see friends, I see people laughing, I see people having a good time. I think, you know what? That's what life is all about. That's what you got to nurture in other people. Like you say whether the moment is fleeting or the moment lasts a long time. It doesn't really matter. It's just that you show love to each other. You show love to yourself first of all, but you show love to other and you recognize that love is still all around us. Even if I remember when somebody said to me even the most, the dirtiest criminals, you might say, have friends and maybe that's a base friendship or maybe it's a friendship based on putting other people down but it's still a privation of something that's good. So I think to myself, if you can nurture friendship without the base of putting people down, that's one way of doing things because we don't need that part. We don't need the part where we're putting people down. We don't need the part that where we're making our jokes about people and their illnesses and the colour of their skin and all that stuff. We don't need that. We never needed that, but I think we definitely don't need it anymore.

Yeah. Thank you Todd. That turning away from ableism, racism, and sexism is so important. 

And I saw a lot of connection with that final question and the beginning of your piece when you're talking about your ancestry, your heritage, where your father comes from, and all these different words of "dreamer," "misfit," "outsider," and recognizing all of that diversity that brings you here today. So, I felt like it was a good connection. 

I remember I was at a conference once about mental illness and I named my piece "Coming Home" because that was what it meant to me to be brought home by God. I remember the reason why I am a Christian is because I went to a church one day because I just needed some solace for all the pain that was going on inside me. I just felt like I was an outsider and the first thing this minister said was "you may think you're an outsider" just addressing the crowd but I felt like he was addressing me in particular. He said :you may think you're an outsider, but there is no outsider to God. God will always find you and always bring you home. And you will always be loved and you'll always find that." Again the image of the hearth and the food on the table. And one day that'll happen. Maybe it won't happen in this life. Maybe it won't happen until the end of time. But one day you will be loved so fully that you'll wonder why you never noticed that love in the first place.

Yeah, that grace of God. Thank you Todd so much. Now, it's one of my favourite times in the podcast where we have authors talk to each other about their work. Perhaps, we'll start with Carly asking Todd a question or sharing a thought or something and then Todd you can ask a question or share a thought with Carly. That would be great.

Yeah, I was really struck by that last line you actually just said where you'll just feel so much love that you'll never have noticed that it didn't exist or something like that. Yeah, I'm wondering if you could actually speak a bit more to that.

I wish I knew how to bottle that because I don't. In the moment, I feel like I know the answer and I don't and I wish I did. You know friends of mine call me everyone's favourite man on the mountain. Well not really, I just have gone through a lot of stuff but you know. Anyway, when you've gone through your life not really knowing that you've been loved and it's been there the whole time. You just don't know it. And when you realize it, when you realize that. When you find it one day, and I believe everybody finds it one day, but when you look back on your life after you find it, you realize, "wow, it's been there the whole time." You just hadn't the sight to see it or the ears to hear it or the heart to feel it or the arms to embrace it but it was there the whole time and that's okay because we all have that experience. I  think it's fine that it may take some people time. It's the similar wages parable. I think when it comes down to it, it's the idea that we'll all receive that wage, that love. We may not receive it now or even in this life, but we will receive it. And when we look back, we'll realize we've always had that love. We've always had that love. That it matters not a jot that we didn't think that we had it. It's sort of occupies a space that it didn't occupy earlier. 

That's so powerful. When we realize that and we see it and feel it, it feels like it's almost a crux of transformation when we are able to fully touch that and hold it for whatever selves we're holding it for and seeing how that allows change and flourishing. 

One of the things that always helped me was knowing that there's always somebody praying for me whether I knew about it or not. I mean I grew up with great aunts who used to pray all the time and they would tell me and my grandmother would pray all the time, too. People say, you know, we're praying for you. The nuns are praying for you. Whoever is praying for you, the people down the road are praying for you. You may not know it. You may not even care that much, but they're praying for you. And when you realize just what that me means, it's so powerful. I can't tell you. It just it broke my heart one day in a good way. It broke through all that darkness that I was carrying my whole life. 

Yeah. Those are moments when we can glimpse the love, right? Those are important. And Todd, do you have a question? Can you share a question or comment about Carly's work? My only comment is that while I mean, I've been there. Not the particulars obviously, but the anxiety of not feeling good enough or like that every step I take is between heaven and hell and like oh man, that's visceral and I've been there. Because I feel like every time I go out the door I feel like that way, like when I have my anxiety about leaving the house, like I'm walking on that tight rope that you mentioned. But I mean, I'm learning the patience that you're experiencing now. And learn that patience that you says, "Okay, well, let it happen. Fall if you have to fall, but you're you're going to be okay." 

Yeah. I'm really glad that it's resonating, the imagery for you. It feels like because as you're talking about the tightrope image, for example, it's really clear to me how our structures and our paradigms are set up so that way we are expected to not fall down or like if we do that that is bad or "bad" in quotations or a "failure" or whatever that kind of narrative maybe and actually knowing that falling might actually be part of the process of becoming. Thank you for highlighting that. Thank you. 

Yeah, I see that when you're talking about recovery narrative. I see that you cited "Mad Matters," the book on Mad Studies and how that feels like that not allowing for a falter or fall is an idea of recovery being very linear or very structured. 

Yeah, I work a lot with earth-based wisdom and that kind of cyclical nature of life, right? And that has been such a healing narrative for me that both helps to learn to undo the narratives of that linear space and bring about a new one that actually feels like, "oh yes, this is part of the process." And the expectation that everything is upwards becomes null or void. And it's actually there is this up and down that is part of the whole process of creation in life. And that's natural and that's like welcome and accepted, right? 

Yeah, it allows you get to give yourself more grace in that process. Wonderful. Well, thank you both so much for coming and being a part of the podcast. I'm a new host and so this is only my second recording, but it was such a lovely recording. So, thank you. Thank you both very much for talking about your own pieces and also engaging each other's work. I think that's really where the most fruitful and generative parts of the conversation really happen is when we when we look to each other's work. Just a quick note before we end we do have a call for papers out on the on the website. And this is looking at the relationship and connection between disability theology and Disability Studies and part of that could be also Crip Studies, Mad Studies. So if anyone you know or yourself would love to submit something, we''re open to submissions now. We'll be sure to put that link when we post the recording. Wonderful. So, thank you very much for joining us. Yeah. 

Thank you so much, Todd, Emma, Miriam. Grateful to be on the podcast today. 

Thank you very much.