Season 3, Episode 7: Allen Jorgenson and Laura MacGregor

Join Amy and Miriam as they talk with Allen Jorgenson and Laura MacGregor about their recent book: "Beyond Saints and Superheroes: Supporting Parents Raising Children with Disabilities - A Practical Guide for Faith Communities." Proudly published by The Mad and Crip Theology Press (Amy Panton, Founder/Publisher).

Available with captions on YouTube:  https://youtu.be/4-uwXfrG7wU

The authors are available to speak with your faith community about this project. Get in touch with author Laura MacGregor by emailing Amy at the Press at amy@madandcriptheologypress.ca. Contact author Allen Jorgenson at his email at Martin Luther University College at ajorgenson@wlu.ca

New! Purchase the e-book version here. In Beyond Saints and Superheroes: Supporting Parents Raising Children with Disabilities A Practical Guide for Faith Communities Laura MacGregor and Allen G. Jorgenson tell the stories of parents who have brought their children with disabilities to church. Some parents have felt supported by their faith communities, while many have felt unwelcome, silenced, and have even left their churches altogether. This eight-week guide is written for personal self-reflection and small-group learning. The guide highlights practical ways that faith communities can support families impacted by disability. Beautiful illustrations by Wendy Newbery and poetry by Allen G. Jorgenson, along with spiritual practices, provide points of reflection as you journey through the eight-week guide. ​The Beyond Saints and Superheroes Research Project was made possible by a Project Research Grant from the Louisville Institute.

• Follow us on Facebook
• Read the Journal
• Check out Mad and Crip Theology Press

Transcript

Welcome to the Mad and Crip Theology Podcast we're so delighted that you're you've joined us today and Miriam and I are excited to welcome our guests Laura and Allen so Laura and Allen I'm gonna ask you to introduce yourselves Laura would you mind starting for us? 

Sure um I'm Laura McGregor I worked with h Dr Allen Jorgenson to complete this project which was a research project funded by The Louisville Institute where we uh spent time with uh interviewing families which we'll talk about in a moment um yeah I don't really feel I have much more to say other than colleague of Allen's and worked with Allan on the projec. Thanks Laura and Laura is a veteran here at the podcast she's been on many times so we're so happy that you're back here with us today. And Alan welcome thanks so much much um since I'm new to the podcast maybe I'll give a little bit more of a description um so I'm Assistant Dean at Martin Luther University College where I teach theology um I'm a seemingly able-bodied straight white settler cisgendered male who's well educated and I describe myself as dreadfully rich in comparison to the majority of the population maybe to give you a bit of a picture of myself as well visual um I'm a late middle I guess I call myself a late middle-aged male um balding on the top my kids remind me of that from time to time graying hair which I take as a sign of hopefully um aging wisdom let's go with that um I'm in my office at home there's a picture behind me of uh um on Lake Ontario sky with lots of clouds against a nice bright blue background um it kind of it's a painting that makes me happy because it comes from the picture I took on my sail boat um I'm wearing a plaid plaid shirt that's checkered with kind of purple blue pink whites so there's a bit of a picture of who I am thanks again for the opportunity to be here it's great to be with you.

Thaks so much Allen and great to great for our listeners to get a sense of who you are. Um we are so excited about your book and Amy of course worked with you a lot on it as a part of the Mad and Crip Theology Press but I wondered if you would share how the book came about and what what in the book for readers to discover so anyone can jump

in and add. I I'll just quickly start by waving the book about so that people can see a picture of it so um and then pass the baton over to Laura oh okay great I'll catch the baton um okay so the Beyond Saints and Superheroes uh book which Allen and I published with the Mad and Crip Theology Press back in March of 2023 um summarizes the project that we uh did with funds from the Louisville Institute exploring the experiences of parents raising children with disabilities within the context of the church and to sort of briefly summarize the project we did a qualitative project which means we interviewed 20 parents who are raising children with disabilities about their experience with with church and we use the the language of Facebook to invite people to talk about their relationship with church so are you in a relationship with church not in a relationship with church or was it quote complicated and uh we tried to have a balance of people who could tell a variety of stories so we didn't want to interview people who were exclusively in a relationship with church or who were uh avoiding church or who defined it as complicated and the book uh is organized around images which I think we'll talk about uh in a bit and each short chapter offers a reflection on an image and we can talk a little bit about how we got those images at some point and we also use prompts for discussion so there are uh questions that we would encourage people to either think about or talk about or journal about um depending on whether they're engaging in this individually or with a group there are Bible passages there's poetry and there's some really lovely uh sketches that were completed by a local artist which try to bring the images to life um what would you like to add Allen? Um so yeah I mean right from the get-go the the proposal to Lou the Louisville Institute who um thankfully funded this and so we're very gr grateful to them for their support of that um the proposal spoke about um looking at this in the can context of Canadian church life um so in some ways the book is very much aimed at that that targeted that group of people um and so I think has a lot of potential around that I I would also hope however that the book has um the potential of going a bit beyond that that people from other faith communities could take a look at this book and go okay how does this translate or not in in in my mosque or my temple or wherever so um hopefully can have a bit of a broader reading but that definitely is the was the target in in the narrower

sense yeah and I I just want to oh sorry go ahead Miriam. It's a follow I should know this but were the were the contributors ecumenical or were they of different Christian

denominations? Yeah sorry I'm looking to Allen wondering which one of us might jump in but yes so they were from a collection of diverse Christian traditions um but all were were Christian or who had been Christian and I think that might be uh sort of a noteworthy addition that we certainly talked to people who had originally identified with the Christian faith or who had been active in Christian communities but had withdrawn completely or

partially. I was uh thank you for that Laura I was just gonna jump in and say uh what a delight it was uh if I put my publisher hat on now what a delight it was for the Mad Crip Theology Press to be able to work with both of you as authors um and I think we all learned a lot from one another uh as we journeyed through this book and um it was so incredible to see both of you um put this together in a way that was so accessible for so many different kinds of folks um I think as uh when the idea was being birthed you had mentioned that um you wanted it to be kind of jargon-free or as most accessible as possible for as many folks as possible and I I hope that we we um were able to to do that. So so we briefly talked a bit about who the book is for um we wanted to ask you why did you decide to write this as a practical guide why was that important for you

both? Um I think it's important for me I I'll just speak from my perspective for starters I mean one of the things as I've sort of journeyed into this and thank you Laura for the opportunity to be a part of this this was really her her idea and she invited me along and I've learned so much along the way but as I kind of reflect back on my own experience in being trained as a as a as a I'm a Lutheran pastor as well as a professor um my training as in ministry my MDiv we simply didn't touch this material at all which is um you know aside from "inspiration porn" here and there um but aside from that it's my my church community itself simply didn't talk about this um so you know the experience of discovering how much I didn't know um I think was for me I was very excited about the idea of how can we make this something that can you know land well in pews in in church communities at a kind of a local level um and hopefully that's where we've arrived I I kind of feel that way

anyways. Yeah and I think I can share that um and I've talked about this before on podcast this book really and the research project really emerged out of my own lived experience as the parent of a significantly disabled young man for 21 years and it really um it really grew out of my own disillusionment with church and uh the the journey of being very actively involved in church and strongly identifying with the faith community to a complete withdrawal um because I felt that my son and by extension my family weren't uh weren't particularly welcome though I'm struggling with the right word welcome may not be the right term but churches wanted to welcome us there was no doubt about that but they they didn't know how to um and and once we arrived I became frustrated with some of the more "inspirational porn" type messages that I felt my family was and my son were on the receiving and of and so I really wanted to write uh write something that spoke directly to people who either were faith leaders within faith communities or were members of faith communities or the families themselves I wanted the families to be able to see their experiences maybe reflected in the pages of of the book and and I wanted to speak to communities about uh or share the stories of parents with faith communities about how these families may be feeling um give them a a place to speak openly um because of course all of the participants are are anonymous within the nature of the book um so they could speak openly and perhaps have their stories heard by by the broader community and and we can begin the conversation about then how to create more welcoming spaces for for people with disabilities and and by extension their families and their parents their caregivers so that that was really sort of how I engaged both the project and the book was it was very much from a place of someone who had lived this story and wanted to to speak back to the community from that place of experience rather than engaging in in a more uh academic dialogue not that there isn't a place for that but I I wanted um I wanted the initial conversation to be more broadly accessible to to people who are in the community or that was my hope at least um and Allen and I I think worked really hard to try to reflect that in in how we wrote about the

project. Great um that's helpful and I'm hoping in this next part you can also maybe raise up a story or two that is staying with you so along with that maybe talk about the themes of the book and especially this this idea of images of the church and how you co-created and you played with these

images. I can talk real quick to the images just for starting so um Laura and I both have had the privilege of working with Tom O'Connor um now re he's a professor Emeritus at Luther um who's kind of a an expert in qualitative research and and I know another project I worked with he also talked about uh the power of image and inviting uh informants to to use an image to get to the the research question so um very early in our conversation Laura and I both agreed that this would be a helpful um and powerful way to um to access people's experience their lived experience I think one of the things that I mean that I found often when I've asked this question in this and other studies is people kind of have this bit of a deer in the headlight look when you first ask what's an image and they'll they might say something to the effect of gee I can't think of anything and then something falls out of their mouth that's just brilliant um and I think one of the the things I love about about the image question is it's a bit of a moment for um you know drawing on on the left side of the brain um and kind of um sort of accessing a part of you that um isn't always ready right there when you're thinking and you know going through the kind of the logical rational piece of conversations and it just um I think it's a real invitation and we that certainly bore out the images that came were were potent um we used uh six I think there's we had 20 interviews there was some overlap of some of the of some of the images but um there's more we could have had more chapters so

yeah. Can you describe one of the images and maybe a story that went with that? Sure I can start with one and maybe Allan might want to jump in with one as well so one of the ones that really stood out for me and is I think the opening chapter or opening image that we begin the book with is the description of a cruise ship and a dinghy and so we asked people to describe their relationship with church in an image and then to essentially with words paint that image for us and as Allen said people often begin with a a bit of a surprised look though we had given the questions to them ahead of time but often really then become engaged with the image so uh the woman it was a woman who was answering this question began to describe this cruise ship and the cruise ship um you know has people on it and they're going someplace and it's comfortable and and she described the fact that really they wanted to be on the cruise ship but that they were in a dingy and and she said the dinghy in some ways was going about the same speed and going to the same place but they couldn't they couldn't get into the larger community they couldn't be part of what was happening in the larger community um and and and then that really brought out themes of both accessibility that perhaps the cruise ship wasn't accessible either physically but also in other ways like attitudinally um but that also that that there wasn't a place for them there were questions of welcome or exclusion and images of exclusion came up quite frequently um yeah and so that that was one image that really stood out for me and I know that I've played with the dinghy and the cruise ship theme in some conversations I've had since the research project concluded um but there's there were many to work with that was that was one that was just really illustrative of both inaccessibility and

exclusion. Yeah um the the one that most immediately comes to mind for me is um the the next one which is the the pointed finger and that one was was proposed by someone I interviewed um and their story was just so utterly painful um and um I still have shivers um I remember um journaling after the interview and just talking about going I needed to go for a run because it was so upsetting but this woman told a story of of um she'd been a a a long member of of the church this was she this was young they were young in their marriage when they had their child um and the church had sort of been the place where they did their premarital counseling this was the church the pastor who did the premarital counseling spoke about wanting to journey with them through life this was their place these were their people um regularly um supportive there's lots of interaction um and then um and presence during pregnancy until the birth of their child with these severe disabilities and all of a sudden um the church sort of disappeared their their life was very complicated um but when they finally got back to church after you know the child was I think three or four months old or something like that um you know the the reception was just horrible and the pastor came to the couple immediately after the service and told them next time they need to sit at the back because because the child was too distracting and um it was intimated that uh this child was um born with disabilities because of their sin um and so this was a woman who uh then identified the church as a pointed finger um that that was just so powerful and painful um and her experience was um I mean she is still living with it as you can well imagine um and in a way I'm still processing this interview um as I will be for I think the rest of my life but it that that image itself was um I think really spoke to the experience of too many people even though they used other images. Another common image that sort of spoke about this was a there was a few different people who used the picture of uh the church as a circle um of people who are smiling at one another um chatting and they're on the outside tapping shoulders trying to get in um and that also was a um a recurring and problematic image that sort of reflects that pointed finger piece. Yeah this the image images describing exclusion were uh significant and came up frequently so we had images of locked doors we had images of circles images of exclusive um exclusive uh environments like a cruiseship we had people talk about needing a membership card um I I thought it might be helpful to share the one more positive image well a lot of the images described themes of exclusion there was a really rich story that explored the idea of a mask so concealing the true nature of the church um while they put on a particular image that underneath behind the mask perhaps was a more excluding more excluding face but there were some some more favorable ones and one of the ones that I really enjoyed hearing about was someone described the church as a tree and and they talked about how um their faith community really planted the tree and allowed sort of the roots to take hold such that when they left their faith community because they were one one of the families that had left they had this sort of vibrant living tree that allowed them to sustain their own faith and their own spiritual life um and that they could then continue to nurture this sort of this living being um through their own efforts um so it really it really spoke to the resilience I felt of faith um even absent a faith community and and people's deep need for a spiritual life um even without a faith community to the point that they would then develop a lot of really rich and meaningful practices to nurture that tree or whatever the image that they shows to play with so there were some some really positive stories as well though I would say um and I would look to Allen as well to to sort of maybe confirm this but I would say that the majority were were conflicted or outright uh negative um but not all. Yeah that I completely agree um and actually even the ones that were positive had their had some pretty harsh things to say in the middle of it another one that was somewhat more positive and it of woven a couple different ways was um well one that comes up in the book is the image of the church's warm bread and sort of related was another uh person spoke about um working in the kitchen uh the reflection of the kitchen or another person spoke about sitting at a kitchen table and the conversation and so I some I've since thought a little bit more about um how powerful that image of the kitchen is for the church the church is a kitchen I don't I'm not sure where I go with it but it is something that I've been sort of starting to think a bit about um as a kind of a as a and kitchens are so incredibly important places I mean growing up this was this was the place I mean more than the living room or whatever the kitchen is where community takes place and so I found that to be powerful um and I think on the reverse side is um you know people who aren't feeling fed or um feeling pushed out of the conversation I think it's kind of the reverse of that so there was a bit of both of those. Right and I think one of the sort of a final comment that I would add maybe before we move forward is that even those people who attended church regularly and faithfully often described really conflicted relationships with church and described images that captured that conflicted uh complicated relationship so even people who would have initially identified as in a relationship using the Facebook language again with church once we started talking it became pretty apparent that that the relationship was complicated and conflicted um for many of these people involved in this the the

interview. Well thanks so much for that really helps us to get inside the book a lot more and also see a little bit behind the curtain of your um your work as researchers we wanted to ask you how your images of the church have shifted after writing this book um you know if we were to turn the question to you both now and and ask you what your your image of the church is um would you be willing to share with us if you have any

insights? Uh Alan did anything did this question for you? Yeah yeah the problem is it's it's images not image yeah there's been lot I I wanted the interesting um well let me say two things um and then I'll pass it to Laura and we can pick it up from there as well um so the the one the one piece is um I'm increasingly understanding that the church when it's authentic understands itself to be a disabled church um so its members um all I think in some way or another um are living or will live into disability um we constituted as such so I think we lie to ourselves we pretend we're not um as it it's part of the culture we live in it's part of our you know failure to be true to ourselves so I think that's one thing the other one that I think is a bit more surprising and um I was just sort of this just sort of popped in my head the other day is one of the images that comes to me of the church coming out of this study is a picture of people leaving the church so the church so it's a bit of a paradoxical image but in some ways the church that I saw that was most authentic in the conversation we had were people who walked away from the church recognizing that the church really starts in your heart and um in your heart of hearts you need to follow what you know to be best for you your child your family and sometimes the place the church starts is when people uh walk away from the church because it's a dangerous place for them to be um that's a really hard thing to to say and to know but um I think some of these people have had experiences where they have to do exact exactly that and I think that's kind of they're authentically being church when they come to the decision I need to get out of

here. Yeah thanks for that Allen that's a that's a great description actually I'll admit that I I've struggled with this question and I'm one of those people that that if and when I'm asked the question of how to think in an image I'm I'm absolutely the deer in the headlights so I'm not particularly skilled at these answers but I think you know I would certainly agree with Allen if I were to stop and and have to craft my own image of what church is to me and what it may be evolved to be as I'm doing this project um I would have answered you know the church is is not sort of the walls of the building but is the world and it's it's sort of how we live and engage in the world um but I think if I had to stop and think okay well what is my image of the church as we did this project um and then perhaps in response to this project and in some of the conversations I've had with faith communities to speak about this project because Allen and I have been privileged to speak about the project with faith communities um I almost get the image of of someone creating images so the church is sort of standing and they've got maybe colored pencils and they're trying to craft they're trying to colour a picture of what they are and there's almost a nope that's not and they throw it over their shoulder and they start again again and they sort of redraft and say okay well you know this time we're going to try this um and then no they they sort of throw it out and I think to me where the disappointment is then is the church is trying to find sort of an maybe a singular answer or a straightforward answer or an answer um for how they can they can be uh radically in inclusive they can be welcoming to people with disabilities and they they're not perhaps understanding that there isn't one image there isn't one answer it's an ongoing conversation it's an ongoing dialogue that you know and that part of that is because if we're we're going to stop and think theologically about this you know if we are created if we are imago dei and created in God's image that means we are radically and wildly diverse and so there's no good singular answer there's many many many images and the church needs to to sort of stretch itself to be crafting these images to be co-creating these images with its diverse body um so I think that's sort of where I'd go um yeah so again a really complicated and and maybe multi-image

answer. The other...Go ahead Allen. Thanks Miriam um the other piece that I would pull into the puzzle is um thinking about body and bodies um the image of the church is body and bodies um which of course is you know the church is the body of Christ is a long-standing trope in the church um but paradoxically or tragically really more than paradoxically um the church becomes hostile to the body um and so how can we bring the body back into the church I think that's one of the things I liked about the image question was um it was a it's a bit more visceral um it gets people kind of out of their mind and out of their head and a little a little bit um or better yet it invites us to move from head and mind to body-mind like trying to think of us in terms of our singularity so how can we how can we re-embody that picture of the church as a body um and I really like um so I've been doing a little bit of work around carnal hermeneutics and and the importance of touch and skin and um the porosity of the skin and how uh this you know this largest organ in our body is porous and so um yeah I think that that uh the church that's authentic is is both is it has the world leaking into it and it has itself leaking out into the world so I think leakage would be another word I might like to think about it in terms of church images the leaking

church. That's a great image. I've played with leaking a bit myself cause it's often used in disability studies. 

So yeah I think of the leaking body of the disabled Christ how his wounds leak into the disciples and and change them and how those he met um the hemmoraging woman and so on whose bodies leak into his and change him yeah lots to go with there. Thanks Allen. Um I wanted to add in another question then Amy get us back on track. But what you said you've shared some of this with communities of faith and I wonder what their response has

been?

I guess again I'll look to Allen I think my experience has been largely favorable um the places where we've been invited to speak or I've been invited to speak are are communities that are really um grappling with um questions of inclusion and and that's a problematic word for me but we can talk about that uh if you want but but so really struggling with what does it mean to be radically welcoming what does it mean to make sure that church uh genuinely is a place for all people and all bodies um and so I think you know if they've been asking Allen or I to be part of the conversation it often means that they're they're really often they're wrestling with the question and they're they're genuinely interested in um in hearing the answers because the answers sometimes are are hard to here we were talking we're telling a lot of stories which um isn't they don't always paint church in a favorable light um and those that can be really hard to hear um particularly if you're on the cruise ship and I I played with this metaphor in one of the talks I gave if you're one of the people on the cruise ship rather than the dingy and you look around and you see familiar comfort and you see friendly people and community um and you you think oh I just have to say people come on in um without realizing that people then have to adapt to the norms of the community of the cruise ship um when you're the one who really loves that space it can be hard to understand why other people maybe aren't feeling the same way and so those can be difficult conversations but in my experience they've gone really well people are really engaged and uh and want to talk about it um I'll I'll turn it to Allen and he might have other thoughts. Yeah no a couple of things I and I think in some ways um what you're saying reflects the experience of some of um our informants our participants in they love their churches like they absolutely adored them these were this this was home and when all of a sudden home becomes a dangerous place like how do you reconcile that it's um so people don't want to hear that they love so much is actually a dangerous place for some people um so I think that that's that's one piece I think yeah I the people who are the communities that are asking um for these conversations are already um working in the journey towards uh justice and I think that's I'm mindful of the many churches that don't ask for for uh you know for the conversation um I'm also mindful um I say this over and over again that institutions our institutions and they always take care of institutions so that's a that's just a hard truth that those of us who live in the institutions have to have to face um and it's you know I've often used the example of justice work is like um uh going up a down escalator as soon as you pause you're going in the wrong direction um and it takes energy and and it's sometimes quite disheartening to do this work so um yeah I think those are a couple of the I don't want to be negative but I think we also need to be realistic about this that there's a lot of there's a lot of faith communities that really aren't interested because they're quite comfortable um and uh it's hard it's hard work for people so but you know again the other piece of the puzzle is I've sometimes my elevator speech for what I learned from this uh from this project is um it's a good news bad news good news story um the good news is that uh these families of uh raising children with disabilities um they're spiritually interested and they they they're they're hungry for what the church has to offer they recognize in the church something valuable they recognize Spirit they know the the you know the message of Jesus is one of um an invitation to be participant is in God's unconditional love so they're they're interested in that the bad news is the church is rife with ableism and is living the exact opposite of the gospel um but I like to also end on the good news is that you know churches that are repent that repent of ableism um we can and are places where um that more fulsome image of the church as a disabled body that's living the you know the diversity of God's beautiful creation um can be incarnate it can be real um and so I think that that's an important piece for us to all be thinking of not to lose that eschatological hope in the midst of the messiness that um and the yeah the abuse that can be institutional. I will add just sort of on another more practical maybe note uh one of the conversations that I found really interesting is that well churches were were really engaged the ones that invited us and wanted to to have these conversations many didn't understand inspirational porn and so many believed that they were uh were very welcoming for people with disabilities in their families and held them up as these um very meaningful and inspirational uh stories and and struggle to understand why that was problematic when those conversations came up and that uh you know the discussions around people with disabilities didn't want to be inspirational tropes um but really wanted to be active and valued members of the community um and be able to offer their unique contributions to the life and work of the church um to have their unique gifts and leadership skills uh you know welcomed and included um and and integrated into the meaningful work of the church and and that they didn't want to sort of represent these um sort of unidimensional sort of stories that were ultimately used to prop up the spiritual needs of other people um and and so that was often a real learning for churches um and again people were really interested in that conversation and often we're genuinely surprised that um that that was a difficult um and problematic way to talk about

disability. Well thanks so much Laura Allen that really helps us to understand the book a bit more and get more inside of it um we wanted to ask you as you're reflecting upon um the book and uh what some of the participants told you what would you recommend that parents do who have kids with disabilities who've experienced the same kind of spiritual abuse that you talk about in the book um what would you recommend that they do what are some practical things Allen you had talked a little bit about leaving and sometimes that is something that must be done for safety and for for other reasons but what else can they

do does anybody have any thoughts? I think my immediate answer would be speak up um tell your story make your needs known um and and don't apologize you know you are you know you you as a family or as an individual have every right to be in that space um and to tell the world what you need so that you can safely be in that space and if you're not getting an answer that is affirming and and welcoming and uh uh really trying to make sure that that space is safe and and welcoming and and celebrates the unique contributions of your your your loved one with a disability or your family um be honest about that um I I know as a as a so I'm in some ways I I can't not answer that this question as someone who lived it like I I I'm immediately sort of in that space where yes I'm a researcher who who uh can integrate the results but I'm also really speaking from a a parent who lived this as well um you know understand that the Divine does not live in the church it lives wherever you are and wherever you're doing the work of the church and if the church isn't creating that safe space for you and unsafe was a word that came up a lot in this research um the lack of safety in churches was discussed openly and often and if you're not finding that safety then then you know I think it is reasonable to leave um and and you should do that in a guilt-free way um but I also think that um and and Erin Raffety in her book does a really excellent job of speaking about this speak about what you need but but don't let the church paint you as a problem to be solved or to engage you in some kind of transactional relationship where they respond only if you show up um there so you know I think I want to tell parents to be and again I'm speaking primarily to parents here be bold be audacious be clear um and expect the church to show up um in a way that is gracious and welcoming um and is not transactional. Allen what would you add? Those are that's really helpful thanks um I think a couple things come to mind one thing is I think it's probably helpful on a pretty regular basis to look in the mirror and to look at yourself and say I'm a gift of God um I have something to offer um and that gives you a place from which to do um this kind of work that you need to do as a as a parent with disability or a person with disability in in a faith community um a couple other things that were recurring motifs in the in the conversations were language of advoc advocacy um so finding allies in your community people who um you can share your story with um uh that you've that can help you then in this work the the other one um I was just sort of going over my notes a little bit in preparation for this was the theme of mentorship loomed quite large a lot of a lot of um parents were looking for mentors some were sort of now becoming mentors so I think uh thinking about how you can do mentorship how you can find allies um probably it would probably be helpful um across communities so I mean we've talked a little bit about it terms within my church what would I do but uh what can we do across churches how can people um how can people uh form communities outside of the church um that are kind of out of particular churches that are places where they can um do do and find the kind of support they need so when they return to their own church they have some sort of new energy and ideas and

possibilities.

I also if I may sorry! Oh please jump in. And and say I'd like to to sort of expand this question and the answer to not just what can parents and kids do or parents in particular families do I'm a little worried that we're placing the responsibility on the families on the individuals with the disability on the individuals who are living in unsafe environments who are living with in some cases spiritual abuse and and yes their voices absolutely must be heard need to create safe spaces where they can tell their stories and where people will hear those stories but I would speak to faith communities and faith leaders as well and say um you know it is not up to the individuals to be the voices here to solve the problem that that faith communities and leadership need to be accepting responsibility and the educational institutions that came up frequently the need for people who take on these leadership roles to to actually do courses in um in disability ethics in caregiving ethics and and to my knowledge those are not uh a significant part of the training of faith leaders and so you know it is also incumbent upon the larger institutional structures and the leaders to to be taking these these um concerns of the families and the individuals uh both people who are raising children with disabilities and people who live with disabilities very seriously um and and not put the individuals or the families in the position where they are the ones who constantly need to be advocating who constantly need to be speaking up and ultimately be educating larger structures about what needs to be done so I would also sort of want to open that question up and say what's the bigger picture here who else is responsible for for sort of creating

change. Yeah I might just oh sorry uh sorry I'm just going to add one thing quickly if you don't mind um I think it also points uh Laura just a riff on what you were saying to the institution um the responsibility that the institution has to go to survivors or people with disabilities um because they are the experts on their own lives they are the experts on what they need um instead of uh having more of sort of like paternalistic or dictatorial way of saying well this is what you need um so uh you both have modeled such a beautiful way of going to the parents themselves and asking them what has been your experience and how can we help so and uh Allen sorry you about to say something there. Oh that's that's fine that's was yeah that that actually was very helpful thanks for that um yeah recurring theme from a few different conversations was um well I I like in particular one person said you know it's really not rocket science um ask, listen when people speak and then act um and I would just simply add to that all of this presumes that we um looking about us to see who's there and and recognizing that there's um there's wisdom in the room um and then being humble enough to to seek it out so I think that's part of the

puzzle. So where can people buy a copy of this amazing helpful book? Doesn't Amy get to answer that question? Yes so we have um different ways you can buy uh the book you can head over to our web page uh for the Press which is madandcriptheologypress.ca 

and you'll be able to see a link to purchase the book on our website you can also uh we've formatted it for Kindle as well if you prefer that um way of of interacting with books so you can pop over on Amazon and uh Amazon Canada and buy that book um we also as a as the the Press wants to make some copies available to faith communities free of charge if you're if you've heard this podcast and you're like man I really love to get a copy of that um contact me contact me pop on to madandcriptheologypress.ca and send me 

a message and we'll be able to send a copy to you um so you can check it out and see if it's something that you'd want to either order a copy for your church library if you're thinking of like doing small group study with this book because that's how the book is actually put together there's I think is it eight weeks I think it's eight weeks um uh where you journey together and you read these stories and everybody sits and talks about it so if that's something that sounds like you'd like to do uh in small groups we'd be happy to get a copy into your

hands. Um I might also mention just before we wrap up that if you want to read sort of more of the scholarly side of this study if that is something that uh you really enjoy doing and dig a little bit more into the numbers and sort of like the like thinking about the research side you can also check out Laura and Allen's article that they wrote for the Journal so that gives little bit more I think a little bit more um yeah of a scholarly uh look and so it's called "Beyond Saints and Superheroes a Phenomenological Study of the Spiritual Care Needs of Parents Raising Children with Disabilities" and so that was published in the spring issue of the Journal and you can check that out. I'll just also add to that that uh Laura and I and Tom Reynolds are working on a edited volume called Disrupting Church Images that are drawing upon the study as well so that's that's a little bit down the road but you can keep your eyes out for that um and hopefully um yeah that that that should be hopefully useful resources for churches and and the academy both and hopefully we can have you all back on uh once that book is published and you can we can have a chit chat about that too. Yeah and I was just going to add that I know um I'd be happy uh if if churches or communities are reading book or want to talk about the book or want to engage in a conversation about the research project I'm always happy to either pop by churches via Zoom or if they are within an hour of say the Kitchener Waterloo region um happy to to pop by and have a conversation and talk about the research project um and I can be reached uh really through through Amy at the Press. So yeah thank you. I'd also be happy to do that and um you can catch me by email at a ajorgenson@wlu.ca um just like you see it on the screen. Wonderful we put your along with the podcast episode so people can find

it. Well thank you so much for all your work in this book for Laura and Allen for journeying with your co-creators and telling their stories and and hopefully creating hope that churches can become what Jesus imagined that the Open Table and thank you to Amy for all her book and and publishing and editing with Laura and Allen and thank you to all you for listening to well see you again in about a month usually take care.