Season 5, Episode 3: Morpho Machines & Manifestos with Erik & Jayden

This is Episode 3 of the Mad and Crip Theology Podcast! Miriam and Emma join Erik Freiburger and Jayden Jones to talk about each of their pieces in the latest issue of The Canadian Journal of Theology, Mental Health, and Disability. 

Erik's piece is titled "The Morpho Machine & The Magic Of Life's Potential: Disability, Imagination, and the Work of Becoming Through Exploring Our Defined, Defended, and Deeper Self Identities" where he talks about amidst the friction and the longing, a deeper magic pulses—the kind that makes new worlds possible. This is an invitation to listen, to linger, and perhaps, to participate in the unfolding of who we are. Find his piece here:https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/46679

Jayden's piece is titled Medical Misdiagnosis Manifesto for Disability Justice‬" where they talk about experiences within the medical industrial complex. Find their piece here: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/46693

For a video version of the podcast with closed captions click here: https://youtu.be/QBTmCHA54io

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Transcript

Here we go. All right. Welcome to the Mad and Crip Theology podcast. This is uh episode three of this season, my first season as a host, and I'm so excited to be here today with uh Jayden Jones and Erik uh Freiburger and uh talking about each of your pieces. Um it's exciting when we have multiple pieces to talk about so we can build good conversation between them and uh seeing connections and build on them. Um so I'll start with an introduction for myself and um an image description and then we'll move on to to each of you. So um like I said my name is Emma uh CW Ceruti. I am the editor um of the Canadian Journal of Theology, Mental Health, and Disability, and the co-host of uh the Mad and Crip Theology podcast. I guess I should point this way to my my host and co-host and co-editor, um Miriam. Um, I am a shorter white woman with short brown hair that's going very white and grey and I've got like reddish pink glasses, a brown a brown shirt. Um, and in the background you see a lot of books that need to be packed in the boxes I have because I'm going to be moving moving shortly. Um, and yeah. Oh, I also finished my PhD at the University of Toronto at Emmanuel College. Um, I just had my graduation last Thursday with with Jayden, so that was exciting. A great day. Um, yeah, and onwards and upwards. So, I'll I'll pass it on to you, Miriam. Thanks Emma. I'm Miriam Spies,

happy to be with you today. I'm a short white woman. I have glasses which are pink and black. I'm wearing a t-shirt with a Jane Austen quote

that says what has wealth or fame

to do with being happy. Um, so hence one of my go to t-shirts at home and in the background I have some art on my wall and a bookshelf to my side. So happy to be here. And Erik, can you introduce yourself? Sure. So, my name is Erik Freiburger. I'm coming to you from my home office here in southeast Calgary, Alberta, uh, Treaty 7 Lands. Uh, I'm a, uh, white tall guy in a wheelchair as I am a C45 incomplete quadriplegic and T4 complete. Uh, my wife also is in a wheelchair. She's a C1C2 incomplete quadriplegic. And we've lived here for oh a long time since 1999. And uh from here we have done a number of activities including uh uh leading a house church and I've been a part of a house church movement where I uh led about 14 house churches across Alberta and I uh have been involved in podcasting with a podcast called the inception of wonder and currently I am leading a podcast and a online substack called at the bottom of the well and the podcast is the Well Dwellers podcast uh where I talk about uh disability, dignity, and hope. Um I like working out in my basement and um and watching great movies with my wife. Awesome. Thanks Erik. And JJ. And after you tell us a bit about yourself, feel free to jump in and jump right in and tell us about your piece in the journal. Okay. Uh my name is Jayden Jones. Um you probably saw the piece under Jaden Escalante Jones. I've de-Escalante-d. Um and so I am a recent graduate from Emanuel College from the conjoint masters of psychosspiritual studies, masters of divinity program. Uh and I am a student minister with the United Church of Canada serving a congregation out in Guelph. I'm coming to you here in my home office uh here in Kitchener Waterloo. And uh just to give you a description of me, I am on the shorter side uh less than 5'5 uh black uh with dreadlocks and I have thick rimmed glasses. Um I am also a uh rollator user as well too, so I have mobility challenges. And um yeah, currently I'm wearing a black sweatshirt, one of my favorites. Uh it says faith on the back with different uh Bible verses in each of the block letters.

Nice. Thank you both again for being here. Um and we're going to start with if you each want to tell us a bit about bit about your piece. Um and then we'll start with you Erik and we'll switch to you uh Jayden. So maybe just a little bit about your piece each. How about you go for it Jayden? Certainly. Uh so my piece was the uh medical misdiagnosis manifesto and uh it's really about making people aware of the fact that uh your health journey is yours and if you need to push back uh against a medical professional in order to get what you need, do it. Um, something that I know colleagues and friends have heard me say many times, uh, over stressed out moments with my doctor is, you know, uh, they get to go home and continue their lives as usual and I'm still here in pain. So, I'm going to be annoying.

Wonderful. Well, thank you. Yeah. So uh my article uh I kind of titled the morpho machine and the magic of life's potential. It was meant to be an exploration of disability through the converging spheres of our defined defended and deeper natures of uh self and our identities. Using the metaphor of the morpho machine and from the Apple TV show the big door prize. I am reflecting on what it means for disability to not be something of a broken nature to overcome, but rather a meaningful and transformative part of our human identity. Mostly I try to draw from my own personal experience as a quadriplegic alongside theology, philosophy, and disability thought lines while wrestling with abbleism, belonging, vulnerability, and the sacredness of embodied life. Ultimately, my hope is I'd like to think the article invites my readers to reimagine disability not as a deficit, but as a deeper way of understanding our interdependence, humanity, and the magic of becoming who we're meant to be. Wonderful. I can already see a lot of connections between both the pieces. And um I love that both of you drew from your personal experience. I know I definitely res both pieces resonated with me especially the the the struggle of misdiagnosis and being in pain still as well as trying to discover yourself and find that that sense of deeper identity. So wonderful. Uh I think we'll start with you Erik. Um, your piece engages, as you said, disability, imagination, and identity through the metaphor of of this metaphor, um, morpho machine. And I'm wondering if you could tell listeners a bit more about this metaphor, um, and explain it maybe if they're not familiar with the show and what what you what drew you to it in particular. Okay. Yeah. Um so really this whole piece uh was a journey that started back in 2021 uh when I I had uh experienced a traumatic injury in my body. Um as I mentioned I've been in a wheelchair since 1994 but it wasn't until 2021 when I had torn a number of the muscle groups in my left shoulder including my suppinatus and my uh left bicep. uh and it needed reconstructive surgery. It ended up of course right in the middle of COVID. So I was in hospital uh for a long period of time uh for a year and three months in fact and uh developed some some ongoing health issues with uh pressure wound and so on. So I was on bed rest and I was reading of course a number of books including Betty Prize's book the space between us uh where she builds on these three spheres of identity of the defining defended and deeper self and I couldn't help but see a profound connection it had to my identity and understanding of disability. Uh you could kind of picture it as prior to this uh I kind of thought of my disability in the subconscious level. It was there, but I didn't really focus on it. But now it had all of a sudden become upfront and very personal, and I was recognizing a deep conscious awareness of being a disabled person.

I think when it comes to the morph machine, I I tend to really like uh experiencing understandings and learning meanings uh in life through the language of metaphors. I think it's one of the most powerful languages we can use. Um I think it also helps us think in a much deeper way. Um I think this is why Jesus used parables particularly from his culture and his society. Uh I took the metaphor given around the morpho machine and pondered this particular question. What if it gave someone the potential of being disabled? And for most it becomes an assumption or a limitation of loss, lack or or tragedy. Um but I think instead what I would do is flip the assumption upside down kind of like Jacob wrestling at the side of the river. I might ask what if disability is not a failure of human potential but another way of embodying humanity itself. I think my life in that moment really and hopefully to others who are reading this uh journey that I took as well as listening today might even see deeper truths about vulnerability, interdependence, spirituality, imagination and what it means to belong in life. Excellent. Thank you. a lot of themes and resonances in the wider field of disability theology too. So thank you for sharing and I need to find that TV show now. Um, but for now, let's go back to how you named the the different selves defined and describes defended and deeper. We wondered if you could share more about the movement between those and how what does it mean to move toward a quote unquote deeper self for you? Yeah. I found your your question rather intriguing uh particularly in the way you described uh the movement towards the deeper self. I I personally don't see this in a linear fashion. I think that uh these spheres are rather more a converging u artistic uh color palette for us to work with as it creates uh who we are becoming. Um actually I read this quote this morning from my wife's kitty calendar from Pablo Picasso and it made me think of this. He said God is really only another artist. He invented the giraffe, the elephant and the cat. He has no real style. He just goes on trying other things. So when we take this defined understanding of who we are, uh we articulate and work on the nature of who we are in time, history, uh the convergence of the models of disability and the theology that fashions us in the image of God. There's probably a lot more we could build into that. That's part of the artwork. Uh but we take that and we also recognize that there are defended false truths that we might hold internally or that the society around us uh puts upon us. Uh recognizing uh the importance of recognizing the lies that seek to control who we are, the biases, the systemic prejudices and injustices that are both inside us and around. And then we also have that story of the deeper self uh that also shapes us. Uh the submissive acknowledgment that ultimately our creation uh our creaturliness if you will is shaped by a transcendent reality uh on which is guided by our relationship with our creator. Um we don't kind of move from one of those natures to the next. We draw from all of them throughout our life. Uh while as Kierkegaard kind of puts it, with God's help, I can become myself. Um and we get to be excited to see um as as we become who we're meant to be. So,

uh wonderful. Thanks so much for um kind of expanding and clarifying um yeah the the graph in your in your article with the three spheres which looks very trinitarian also helps kind of demonstrate the nonlinear um eb and flow really of these different selves. Um, and I just kept thinking of, you know, various metaphors of layers or like paintings where it's all blurred together. Even like terrimisu, it's like layered upon layered or something. So, um, thank you for kind of bringing a deeper meaning to that. Well, using the word deeper. Um, yeah, Emma. Emma, could I expand a bit on that? Yeah. Just briefly. Mhm. So you used the the depiction of an artwork and I love art as well and I talked to a lot of friends and and family about this idea that when we look upon a piece of artwork, it's not just about the colours and stuff that are on the canvas. It's about also taking in the way in which it's framed. It's also about taking in the environment in which it's displayed and the person viewing it. So as we find meaning and significance, we have to take all those things in to be part of the expression of of who we are. Yeah, that makes a lot of sense. Yeah, thanks. Um, so our our our next question for you, Erik, is about how your your article really um resists a narrow understanding of disability and human potential, especially with the way you structure it the beginning with the metaphor of what if um you with the morpho machine you were disabled and what does that mean? And I'm wondering um how your does m imag imagination um because you've used this a bit as well um open up new ways of becoming um or even relating to ourselves to others to God to creation.

Yeah. Um yeah, I think a lot of times uh we end up locking ourselves into these systems of thought and ways to to articulate and understanding our world and ourselves. But by setting our imaginations free, it is my hope that we can see ourselves from outside of these polarizations. the uh the the ideas of pity or fear uh or um or the sense of lack uh and unfulfillment and rather reframe our identity as wonderfully and created and communally set in in a mutuality of relationships. I think we can ask questions particularly when we set that imagination free um both in our theology and in in our medical understandings. I can't wait for you Jaden to share more on this but uh we can ask questions like what if what if disability reveals another language of being human? What if dependence is not weakness but part of how we are created for relationship? What if the question we should be asking is not who I am but rather who am I becoming? Wonderful. Thank you so much and it was good to spend time hearing a bit more about where your piece come from and how do you think about it now? So, thank you and we'll get that to you at the end. But for now, we're turning to Jen and your wonderful face. And we wonder first off if you could read the pipe from your man Pel. And as you read them, think like tell us what feelings or thoughts come up for you now reading them again. Certainly. Um, so I'm going to uh read the little descriptions with it as well to you so that you have a little bit more context with that. So I uh made the manifesto with five points and uh those ones number one is the right to a second opinion. So if your diagnosis does not seem to fit, you have the right to keep investigating. If your primary care provider does not want to look into any differential diagnosis, so that's like uh looking into could this be caused by something else. Um, you're entitled to a second opinion on your diagnosis and a treatment plan by another medical professional. Uh, number two in the manifesto is the right to accessibility regardless of education level. Uh, you have the right to have your health explained in an accessible way. If your care provider uses a lot of medical terminology, you are entitled to an explanation of your diagnosis and symptoms in terms that you understand so that you have a better understanding of what is going on with your body and how best to care for it. Uh if a physician refuses to find a way to explain your condition in a way that is accessible to you, you have the right to a new doctor who will work with you and your limitations to help you understand your health. My third point is right to quality of life and I'm highlighting pain specifically here uh is the cause of impairment for so many people um especially with things like back pain and chronic back pain which is one of the most common causes of pain that can cause impairment and you know loss of work and things like that. Um unmanaged pain negatively impacts quality of life. However, pain itself isn't really a diagnosis, even if cloaked in medical terminology. I have seen a lot of people um be told, "Oh, you have sciatica," and then nothing's done with it, or arthralgia or lumbar or chronic inflammation. Um these are often symptoms of a larger issue, sometimes even a systemic one. And you have the right to know the cause of your pain and the treatment options to help improve your quality of life. Uh number four is the right to care without judgment. Uh you should not have to justify your current weight and how that relates to your physical condition by proving you were once active and lighter before you began. Um this is really against fat phobia. Uh weight is usually a symptom of a larger thing that's going on with with you, not the cause. If all of your symptoms are being blamed on weight, food choices, and exercise, you have the right to ask your doctor what test they would run if you are not overweight and to question if weight is the only reason preventing them from ordering tests. If your doctor refuses to consider things beyond your weight, you have the right to have a care provider who will work with you and take your concerns seriously. And finally, number five, um not in the least, perhaps one of the most important, uh the right to be listened to. A doctor really at the end of the day is a specialist on the human body. However, they're a generalist on that. Um you know your dayto-day best and better than anybody else does. So, you have the right to be listened to by your doctor, to have your concerns taken seriously, and to have your care provider at least considered a test you would like. If a care provider gives push back, you have the right to demand that they explain to you why not having what you have asked for will be beneficial to your health and well-being. Wow. So, those are powerful. Yeah. Thank you. How what are your feelings now after you read them again? Um my feelings are uh mixed bag. I'm I'm glad I got this out there. Um and I hope that people are reading this and kind of really absorbing that. But also there's always that pain of the fact that this even has to be something that needs to be said to begin with. uh that is to struggle and it also makes me reflect on my own struggle. I come into disability as somebody who's uh facing it as an adult. I first started having chronic pain in my early 20s and um I I come in with many intersectionalities. I'm I'm trans. I'm black. I'm neurodivergent and as as well too. So, I've seen those things play a role in how I've been dismissed. And I've also seen how things like classism and that educational level have also turned around and made me be more listened to. Um, I I think it's frankly bloody ridiculous that it took me pretty much telling my doctor, hey, I'm an allied health care professional before I suddenly got the oh, you know, and listening to me a little bit more carefully. And it's like it shouldn't take me telling you that I also work in the hospital systems before you decide that maybe I'm being serious here. Mhm. Yeah. I see a a lot of overlap here with um with MAD studies um and with uh fat studies especially with those a few of those of the right to a second opinion and a lot of people in MAD studies have talked about the way that they've gone through multiple diagnosis and it feels like uh there's an expert telling them about something about themselves in a way that um uh so I can see I can see a lot of overlap there and and also the way that you're talking about uh that care without judgment and in particular you talked about weight but um even as you're explaining uh so many intersections of your own identity there's so many ways a doctor can judge you and by the way that you the way you present um and I also love that um a lot of these I feel like can be applied to medical contexts to educational contexts to jobs there's a lot of overlap there um even disability theology like the the right to um uh accessibility regardless of education. So I'm thinking of how Julie Watts Ber's book she um had it translated into plain language so that it could be more accessible for others. So I feel like there's a lot of work that our own field can do. Um but I want to transition to the next question of this how this manifesto really is very personal for you. Um it's you can really see how it's out of your own journey. Both of these pieces definitely were. And I'm wondering for you um Jaden, what inspired you to write such a personal piece in the form of a manifesto? Uh there were a couple of factors. Uh the first one was that I was taking a class with Professor Sparrow Panton at uh Toronto School of Theology and at Emanuel College on uh neurodyiversity and disability and um that course was so great because it helped me understand my own neurotype a little bit better. Um, I'm undiagnosed uh autistic, but I've had some informal diagnosis uh there that's kind of been confirming that and kind of really put some pieces together. And I even use um in the leadup to the manifesto an example of a child growing up with a speech uh impediment, right? Um so quick little joke I always say about speech impediment. What does a kid with a speech impediment become when they grow up? If they have speech therapy, an adult who hides it well and has crippling anxiety about public speaking. Only God knows why I'm in ministry despite that. Um, so that I I have done to my impendment.

There you go. Yeah. So the speech impediment example is actually like directly from my own life. I was that kid that was identified in E well it's not called ECE anymore. I'm showing my age in junior kindergarten uh uh they had like identified that I had a speech impediment. And this is the 90s so for some context here. And I went from ECE, junior kindergarten, until grade 5, being pulled out of class three times a week. Uh many of those years not making a whole lot of progress. And at no point in time did anyone stop and go, hey, might there be something else going on with this kid, which just really makes you wonder um you know, if if you could have had that help uh before. And so this story kind of illustrates how even from childhood if you're dealing with disability um because we have such a negative connotation towards it you can go years without getting the help you need or years without people understanding how to help you properly. Um and that can be very frustrating. Mhm. Uh so it was coming from so that one was like directly from my life. It was coming from the class. Uh it was coming from like even in a bit in my personal life where it was beginning to really feel like uh family members. Um in particular one that comes into mind is my ex-spouse didn't take my disability seriously because I didn't have a rubber stamp saying it is specifically this. Yeah. And that was hard because it's like my capability is this. Oh, well, you know, are you like it was never said, are you disabled? But that question was always there as if like my disability because it wasn't rubber stamped by a medical professional yet was always in the question. Yeah, that's so often the case like in relationship and also in the systems where we need someone else to prove

him. And that leads into our next question. Just just before we do, can I just add a comment to the systems? Yeah. Um, yeah, that definitely is is a challenge with systems as well too. So, I have had over a two-year fight with our uh social benefits uh ODSP. And a big part of that uh was I did not have a formal diagnosis. Now I have one. and we're still figuring out my autoimmune disorder. Um, but we've diagnosed me with fibromyalgia. And it literally took a tribunal where I was looking at the leader of the tribunal going, I walk with a walker every day before they finally granted me the social assistance. Yeah, it's ridiculous. I'm sorry. I'm sorry that happened. So this is why your critique is so important about medical mis diagnosis systems that ultimately fail. disabled people and other parties as well. So we minded you reminded what disability justice looks like in practice to you in your community and your life is passionately living in North America to island the world is shaped so heavily by menism and labels.

H um so one of the things that kind of stands out to me that I think disability justice in a medical in the medical setting needs to move towards is we get really caught up on again like we're saying the labels and uh so for example in in my own personal life because my imaging does not match exactly what they're looking for that's a big part of why we're having struggles diagnosing me and so what I would like to see us move towards is less around the specific label and more looking at function. And maybe that's coming a little bit from my previous experience. Um my bachelor's is in kinesiology which is very much a uh science about human movement and function. And so I I think if we started talking about disability um in terms of function, well, I hate I I hate the function no function model because that gets into a here's a list of all the things you can't do and and nobody likes that. Nobody likes that. But um you know maybe instead having like a scalar module where we go you know fully accessible for you to do versus limit limitations and you need assistance in order to do that particular activity. I think if we move more towards that model it would be more comprehensive. It would miss people like me who are struggling to have the perfect imaging and the perfect blood work for for a particular diagnosis and and start actually reflecting our real life lived reality of yeah no I can't walk a city block without a walker.

Um, and I see how like maybe the word function could be uh you could even uh [ __ ] it to make it into like um alternative functions. Um, there's not one way to function. Um, even using a walker, a wheelchair, a power chair, like all of these are different forms of a function of movement. So, um, yeah. And uh I'm going to move next to the the next question which I think um I'm hearing from what you're saying the last question and a few the few questions before it about how um this piece really holds a lot of um both anger and maybe even sadness as well as hope. Um and I'm wondering how you hold these together um in your advocacy in the in this creative piece. Uh, yes. I think it's so important to lead with hope in these spaces because it is so easy to get stuck into a spiral and I've seen loved ones do this where it's like I'm disabled. This means my life is basically over. I I hate that mentality so much um because it's really lifelimiting um in in in many ways. um in in psychosspiritual spaces um my preceptor in in my space used to always say you know is this um it life expanding or is it lifelimiting and and I really think that sort of viewpoint of I have this disability this means I can't do XY Z is lifelimiting um but I think holding on to that anger is also important too um to quote probably going to get whoever said this wrong I'm pretty sure it says, um, Maya Angelo, um, don't let the anger become bitterness. And I think a big part of not letting your anger become bitterness is to do something about it. I I find anger is often an emotion that is trying to tell us that something is unjust or not right or is not working the way that we're hoping it would. And if we just tamp it down, it just kind of fers and it'll destroy us from the inside out. And that does no one any favors either. So, you know, use the anger as your fuel. Um, but try not to let it embitter you.

Yeah, that's

so important. It can be hard some days. It's not in that bitterness

but to keep anger in it place. Um

why is it

who said um

the ball of anger in the pursuit of justice or the pursuit of love. I forget which one, but um both um anger can Oh, I was saying that anger can be a fuel both for justice and for your own self- advocacy. Yeah. Um, I I don't know what it is, but something about the fire of anger just kind of it'll give you courage sometimes. I know there were times where I got shut down pretty harshly by a doctor and I I'm thinking of last August, right? That was I was so mad. I was so mad after that appointment. And I uh feel like, you know, I've gotten to even get the fibromyalgia diagnosis because I pushed back on that rheumatologist. Um yeah, losing my camera here. Um and it was literally I I I refused to leave the office until I at least said my piece, right? And it came out maybe not the most elegant, but it moved the needle because she realized, "Oh, wait. I need to listen." Yeah. That's so important. Mhm. Yeah. And now we we could talk for hours and about both of your life and your work. But and now we'll move into the conversation between the two of you.

And so we invite perhaps Jen to share about a about Eric's work first. Just name a thought or a connection or a question that came up for you as you read book. Uh yes. So, the first thing that came into mind is one of my favorite um theology books, uh Nancy Eiseland, the disabled god, and that image of God in the sip puff chair. Um, and so as you were kind of talking about uh the machine here, I was kind of remembering a lot of her work and that discussion of again where our humanity is, where that image of God is within us. Um, and how it's not tarnished by the fact that we are disabled. In fact, that just might be another way of God expressing I I I don't know how to phrase this. God kind of expressing that creativity. Uh like you're saying that analogy of you know there's a dog, there's a cat, there's a like so God's doing a lot of different creative things and they don't necessarily all rhyme or make sense to us. Um, and and so I really appreciated the piece kind of bringing that forward of maybe the same is true when it comes to disability.

Thank you. Yeah. Um, I'm not I'm not sure there's a question in there, but I might just Yeah, I might I might just say that um one of the things that shaped my life a lot when I was younger uh came from um Ignatius of Leola. Uh and he said, "Oh, maybe it wasn't

nice." Anyways, the quote that shaped me was when he said, "Concepts create idols. Only wonder grasps anything." Uh, it's something that has really um projected my view both in relationship to God and the divine, but also towards uh creation and who we are as people. Um, we can't hold on to the concepts that uh are necessarily projected at us, but rather remain in that state of wonder. uh to to what God is about. The creation story is still happening in front of us. Um again using another quote from my friend John Van Slotton. I I use this in a talk um a week ago when he said, "My theology is the room and everything is mystical." And so if we just take everything around us as the the shaping theology of God at work around us, um it's so much more beautiful, so much more amazing. Uh you know, we talked about the the the idea of anger, right? Um, but we can have that anger inside of us become a negative draw or we can allow that anger to be projected out in a wondrous way of the mystical um sense of beauty that's taking place. It's saying let's not stifen that beauty. Let's not stifen that uh that amazing work happening. I think and do you have a thought or a question to share with Jen? Oh man. So, uh, in that same spirit of wonder, Jaden, I my friends always tell me I ask way too many questions, so you're going to have to tell me like, "Cut me off here." That's that's enough. But um oh where do I start? Okay, I'm going to start with one that's rather kind of a personal screen similar to you and experience within the medical system, but I am deeply wondering. I know Miriam kind of hinted at this from the advocacy and you spoke on the advocacy side, but I think there's more here. When the medical model separates our symptoms into isolated silos, love the image, by the way. I'm a big fan of Silo and Fallout and all of them too. But is often uh it does the same uh to our identity separating our personal identity as I articulated it with the defined defended and deeper as well as our relationships with our spouses and with our community uh from our physical care as you shared in in your article. How can disabled advocates and this is where I particularly was going and particularly the church institution itself who I think tends to blanket the issue um and I'm thinking of people in the likeness of Bonhoffer who who really challenge this um push back against a medical system that forces us to fragment our symptoms and our intentional identities our intersectional identities. Sorry. Uh just to as you say get through the clinical door. Um gee, where do I start with that? Um yeah, so I was kind of pulling on with that silo image as well too. Um what is known in medicine um at least what it was called back in my time in kinesiology, single issue medicine. Um, so for uh listeners who are not familiar with that terminology, it refers to the practice of a patient going in and they're only allowed to be seen about one issue in particular. So you go in with a cold, you can only talk about your cold. Um, now we know that, you know, let's say using the cold or the flu as an example. Well, if you have asthma, you might have to talk a little bit about what's going on with your asthma with that cold or flu as well, too. So, immediately, even without taking it into the physical disability or or uh mental illness disability aspect of it, you can already see how fragmenting things this much means we're already leaving things off the table and not discussing them, right? and and that has negative consequences down the road. Um so another aspect um that I see where this can also turn around in the disability space is I've also seen and experienced um you know being diagnosed with an anxiety disorder. I have general anxiety disorder with panic attacks. Um, and sometimes being like, well, is your stomach upset just because you're anxious? Right. And and and so again that fragmentation leads you to having less answers, leads you to kind of moving throughout the world almost repeating that same sort of severance from your own body to some degree because we internalize it. And then we start telling ourselves, well maybe that symptom is just because of my anxiety. and how we are taking that same terminology and dismissing our own experiences. Um so in terms of how we can advocate against that um something that I see that is happening in medicine overall is we're starting to see more multiddisciplinary teams which is something that I think we should have been doing decades ago. Um uh in fact my pain clinic that I have right now that I'm really pleased with is a multiddisciplinary team and I appreciate that so much. Um so medicine needs to go more multi-disiplinary so we're treating the whole person. Um and not just symptom by symptom. Uh in the church uh setting I think we need to be having more intentional dialogue about what does it mean to be accessible. Um, one of the big ones that always comes up to to me is in the United Church, uh, there's a little yes no box for congregations to go if you're looking for a new congregation. And I've seen congregations say yes and they are until the minister needs to get up to the lectern and there's two steps there, right? And these are the oversightes. So, we need to start having dialogues about um what does it really mean to be accessible? What does an accessible building look like? Because people just think, "Oh, we have a couple of doors that can automatically open with a button press, so we're good." But if let's say picking on myself here, if I as the minister cannot access every part of the building that I as the minister need to access, then that building is not accessible to me, right? It's not truly accessible. Um, and so we need to have uh discussion about capability and not be afraid of having that discussion. That's another thing that's kind of come up um within my own church leadership. Um because people know that disability can be a sensitive topic, they kind of shy away from having any conversation with the person. And then that just opens everyone up to just making bad assumptions, right? Oh, I assume because you're in a power chair, you can't do XY Z. I assume because you're using the rollolator that you can't walk five steps to the left. that one actually happened to me. So really, it's about having those intentional dialogues of I have a disability. This is what it means for me. Um, you know, you're saying you're accessible. What does that really mean? Is there no stairs? Is there a stair? Is there And really widening that up. So, it kind of goes back to kind of like what I was alluding to earlier, that idea of having the discussion be more on um functionality, for lack of a better word, rather than specific labels. Yeah, Jayden, I think we need, you know, I'm I'm going to I'm going to take it and riff off of what you're doing and say we need to go deeper and further than that. confront those uh defended defended realities that are false within our teachings of the church and the theology. Uh accessibility is not just about architecture. It's also about our understanding of what disability is and the people who live with disability. They have leadership identity as well. Uh you know, you talked about the steps leading up to uh to the stage and the pulpit. I was turned away from a church in southern Alberta from preaching uh because I was told unless I was willing to leave my wheelchair and get into the pulpit, I was not welcome to preach. This is a deep theological break. Um but I also you know one of the things that I was particularly thinking of is the advocacy of the power of advocacy that the church has and tends to uh lack of a better word cop out of with the separation of church and state uh in the sense that um my wife and I as I mentioned my wife is also in a wheelchair uh since 1992 when I was in hospital in 2021 she ended up in hospital as well due to a pressure wound. We were in the same hospital here in uh Calgary. She was down the hall for me uh in just the same floor but a different ward. I would sneak down to her room at night. Don't tell the medical system I did that in the middle of CO. Um but but um we were there together for 9 months and I made it a point for my doctor to meet my wife despite me advocating and asking for me to meet my wife's doctor in that entire time frame. He not only did not but he refused to meet me because we were not recognized as a married couple and the treatment in which we received was siloed using your words uh from from each other um to the point where we had to we had to advocate uh to a board an ethical board to get her out of hospital to come home with me. Yeah. Um, so yeah, I I think the church needs to revisit what does it mean to advocate for our community, right? I I can see a lot of siling happening in the church too and the way that there's separate ministries um for for people for disabled people and then there's regular church quote unquote. So I think there's a lot of siloing that happens in the church that can be that we need to recognize. Um, yes. And I think kind of alluding to what Erik was alluding to, a big part of that still has to do with how we interpret certain, uh, the theological touch points, um, in scripture. So, uh, a lot of the healing narratives, people always tend to view that in in Christian spaces as, oh, well, the ultimate goal is for you to just be done and over with with your disability when you're in heaven. And it's like, yes, but would I still be the same person if I'm just, you know, in heaven without all of the things that made me me? Right. Yeah. Well, you know, Jayden died. I I I hate to cut you off here, but I I I feel like we're opening another that that could well take a while. We'll just have to have another episode until we get to heavenly to find out the find out God's m. So, we wanted to thank you both so very much for your time and your care and your anger and your grief and your lament and your joy. Thank you for sharing it with the window and with the listeners and we do look forward to another future conversations one day. But yeah, thank you both so much. Thank you Miriam and Emma. Thank you. You'll have to join us again. Thank you. Absolutely. This is the first time I've ever done a podcast. Um, so you've made this pretty uh nice and simple and not too nervous for my uh poor little adult uh speech impairment brain.