While Jesus welcomed the disabled, the poor, and the outcast, Christian communities are often spaces of exclusion. Dr. Amy Kenny is a disabled scholar, a Shakespeare Lecturer, and the author of My Body Is Not a Prayer Request. In this conversation, she talks with Amy Julia Becker about disability, the church, ableism, and creating communities of belonging.
Rate and review this podcast on your favorite podcast platform. Then go here and fill out the form to enter the giveaway for the To Be Made Well audiobook!
"Amy Kenny is a disabled scholar and a Shakespeare Lecturer who hates Hamlet. She serves on the mayor’s Diversity, Equity, and Inclusion Taskforce in her home city, coordinates support for people experiencing homelessness in her neighborhood, and is currently co-launching Jubilee Homes OC, a permanent supportive housing initiative in her local community. She is a Scribe for Freedom Road Institute and believes that every human is an image-bearer worthy of belonging. "
For full show notes, go to: amyjuliabecker.com/amy-kenny/
Season 5 of the Love Is Stronger Than Fear podcast connects to themes in my newest book, To Be Made Well...you can order here! Learn more about my writing and speaking at amyjuliabecker.com.
*A transcript of this episode will be available within one business day, as well as a video with closed captions on my YouTube Channel.
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Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.
I do experience ableism everywhere at school. When I was in school at my workplace now at just everyday life at the park, or hanging out with friends or going out to eat, I experienced ableism everywhere and it's exhausting and dehumanizing. And I wanted to focus this book on the chat because I think that it stings in a, in a really tend to place when it's the church, because we talk about how everyone's made in the image of God and we're to love our neighbor as ourselves and we're to welcome the stranger and befriend the outcast.
And yet that hasn't really held true for me in my experience of churches.
Amy Julia (53s):
Hi friends, I'm Amy, Julia Becker. And this is love is stronger than fear. A podcast about pursuing hope and healing in the midst of personal pain and social division. I am going to start with a fun announcement. We are giving away a download of the newly released audio book of, To Be Made. Well, you might remember that I got to record this audio book myself. So if you like listening to me talk, you can hear me read a book out loud and you can enter this giveaway by giving this podcast a rating and review on your favorite podcast platform. And then you need to let me know you did that by filling out the giveaway form. That's linked in the show notes.
Amy Julia (1m 33s):
Thank you. I'm really grateful for every rating and review. They help other listeners find this podcast. And I love building this community. So let's turn to today's show. I get to talk with Amy, Kenny, and we talk about DISABILITY and the church and ableism and creating communities of belonging. I hope you will enjoy this conversation as much as I did. I am here today with Dr. Amy Kenny. She is the author of my body is not a prayer request. And we're going to get to talk about that title because I think it's really awesome. But first I just want to say welcome.
Amy (2m 10s):
Well, thank you so much for having me. It's an honor to be here.
Amy Julia (2m 13s):
Wow. Thanks. Well, I was having a really hard time deciding where to start because a I've read your book and there are not just underlines on every page, but like stars and exclamation points circles. I have a lot that I could talk to me about. And I had a lot that I just resonated and it just was so refreshing to read, but then I read your bio and I was like, oh, and she's a Shakespeare scholar who hates Hamlet. And I could ask you all sorts of questions about that, but we're not going to do that. We're not going to do the Hamlet part. I just thought I would throw that in there. Cause it is a kind of fun fact about you. So I did want to start with the title of your book. My body is not a prayer request because I thought maybe you could use the title to tell us about yourself, give us a little glimpse of your story, but also how you came to write this book with this title.
Amy (3m 3s):
The title is a fun clap back to a lot of trauma and a lot of spiritual abuse. I have been approached in my own church or other churches that I've visited or attended. I have been approached in target parking lots and at the grocery store and at the library by Christians who I think are well-meaning, but have been discipled into ableism and only see my buddy, my disabled buddy, as a lack and in need of a fix or a a. So the title is announcing and declaring that my buddy, isn't a prayer request.
Amy (3m 49s):
My body is made in the image of the divine and radiates that to the world. It's just that the church hasn't caught up yet enough to see her shine.
Amy Julia (4m 1s):
Wow, thank you. That is a succinct and beautiful explanation. I'm also curious to hear a little bit about why your book is specifically targeted to the church. There's a whole chapter early on about some of the discrimination you experienced in schools, which honestly was like mind blowing to read. And yet you're also saying, you know, what, fine be able to stout in the culture. If you have to be, however, we're not going to do this in the church. And not that you're like, you know, settling for what happened to you and your school, but there is a sense of like, if there's any place where we need to get this right, it is the church and we're not doing that.
Amy Julia (4m 41s):
So maybe I'm answering my own question and that's why you're focusing on the church. But I did want to just ask you to speak a little bit to that experience within the church and why it matters so much that we have these conversations and not just these conversations, but like take both action and do some, I think, reframing of how we think.
Amy (5m 5s):
Yeah, I do experience ableism everywhere at school. When I was in school at my workplace now at just everyday life at the park or hanging out with friends or going out to eat, I experienced ableism everywhere and it's exhausting and dehumanizing. And I wanted to focus this book on the church because I think that it stings in a, in a really tender place when it's the church, because we talk about how everyone's made in the image of God and we're to love our neighbor as ourselves and we're to welcome the stranger and befriend the outcast.
Amy (5m 46s):
And yet that hasn't really held true for me in my experience of churches. And I also wanted to focus it on the church because I really resonate the disabled God and think about Jesus's scars as disabling. And I think that that's really important for us to grapple with in the church, because it's not that we are saying, or it's not that I am saying, at least that everyone is welcome in spite of their disabilities, I'm saying disability, it can be regulatory. It can, it can illustrate the living God to us.
Amy (6m 28s):
It can be a blessing and teach us so much. And we have really missed out on that in the church.
Amy Julia (6m 34s):
Yeah. And I want to, I want to follow up on exactly what you just said, especially in the story of Jacob, which you write about beautifully in the book. So we'll get to that. But before we do that, I realize in case we have listeners who are not like well-versed in DISABILITY and even just the language you have, like your very first page of your book as a kind of a note on language. And I, could we pause for just a minute and talk about what you mean when you say disabled or disability and also ableism? Like, can you just give us a little kind of primer on those words?
Amy (7m 8s):
Yeah, of course. I think that's a great question because so many people haven't been around the disability community enough to know some of the language, most people in my experience, familiar with what we call the medical model of disability, which is that a person has a physical or mental impairment that limits everyday activities. And that's generally people's understanding of disability, but then there's also the social model, which says that the environment, disables people, it's not people's bodies, but rather the way that we have structured the environment that creates disability. So in my case, it's the fact that we've put stairs places that makes it difficult to get around using a wheelchair.
Amy (7m 53s):
Not that there are ramps now the social model doesn't work for all disabilities. It has some limitations in terms of chronic pain and our understandings of the way that body minds and environment work together. But it can be a helpful frame for us to think about how, the way that we set up a space and the way that we engage with one another can be really helpful or harmful regardless of what people are bringing in their body minds.
Amy Julia (8m 23s):
So this might be like over simplifying on my side of things, but like, if you are in an environment where physical access in terms of ramps and whatever else there might need to be is truly welcoming and just relatively easy for you to navigate. Do you, at that point, think of yourself as disabled. Like, is there, is that really like, no, that that's just not present in this space, obviously let's also just imagine that world where, and all the people around are not looking at you and having assumptions. Right. But like, is that a fair way to characterize it?
Amy Julia (9m 4s):
Or is that where the kind of medical and social meet in a way that both of them have something to say when we're talking about disability, it's just that when we only know the medical model, we get way off track.
Amy (9m 17s):
Yeah. I think it's probably a little nuanced and it depends on each body mind. So some friends I have would absolutely say that, that they are not disabled when the access needs a match, because I have chronic pain. That's a little trickier for me. So there's some nuance that with my own experience, but I think it's a fair way of thinking about just how important meeting people's access needs are.
Amy Julia (9m 42s):
I remember one time I was in Washington, DC walking with my kids and we've, you know, I was, you know, in most listeners know I have a daughter with down syndrome. So we've talked a lot about disability throughout our children's lives. But my youngest daughter at the time, she was probably eight saw someone in a wheelchair and she said, oh mom, that's so sad. And I was like, what? I mean, you know, kind of, and then trying not to have such a, and I was like, what is it that you see that is sad? And this is just a man like going, I mean, I don't know if he's going to work, going to lunch, but his friend, presumably someone he's talking to walking next to him and I was like, what do you see? That is sad. And she's like, he's in a wheelchair.
Amy Julia (10m 23s):
And I said, well, merely, what is that wheelchair allowing right now? She was like, oh, like, I was like, just describe what you're actually seeing. And we had this great conversation where we ended up talking about like the fact that she wears glasses and no one is looking at her and being like, how sad that you can't see. It's like a, they're not thinking about it at all. Be if they were to think about it, it's like how amazing that we have glasses. Right. I mean, it, anyway, it was just this beautiful actually experience with her, of being able to see the difference that a curb cut makes in a landscape of a city because this person was able to go to lunch or to work or whatever it was that he was doing at that moment.
Amy Julia (11m 6s):
And that is just one of those instances that has stuck with me as far as my own needing. Cause it's still tricky for me having again, thought about this for years to flip the script and not to say, oh, how sad that man is in a wheelchair, but like how amazing that, you know, there's a gliding
Amy (11m 24s):
Amy Julia (11m 24s):
Right. Exactly. So anyway, thank you.
Amy (11m 28s):
Also extend the, the metaphor you're using of glosses. I think that's so appropriate because we can have glosses that a different styles and different fads, and you can show your personality through your glasses and you can do that through your mobility devices as well. What color they are. What's, you know, my, I call my scooter Diana after wonder woman, and I have a little wonder woman w on the front of her, it's mine and past analyzed. And also if you think about glosses, we take them on and off. You sometimes need glasses for one activity, but not others. And that's true of mobility aids. I am an ambulatory wheelchair user.
Amy (12m 8s):
So it's not that I need a wheelchair to walk every single step of my life at all times, but we don't really have a framework for that when it comes to mobility aids, aside from glosses.
Amy Julia (12m 22s):
Yeah. And you're right about that reality again, somewhat painfully as far as, although it was, this was a beautiful scene in your book in terms of going to the DMV and being like AccessAlly a costed for needing help, I think, is that, am I remembering this correctly? Will you tell that story just for a minute because it was the resolution of it was so beautiful actually.
Amy (12m 45s):
Yeah. I'm at the DMV. I am renewing my disability license plate switch allows me to park in accessible parking spaces to make sure that I can get my scooter in and out. And I'm renewing that. And I am mocked and shamed by the person doing the paperwork who says I don't have the right to this placard or license plate. Even though I have a whole folder of papers from doctors and medical forms and all sorts of papers, signed, sealed, delivered, ready to turn over. And I'm very publicly shamed in that moment and told, I can't have the license plate unless I take my current license plates off, which I'm physically unable to do.
Amy (13m 33s):
And I explained that, and I'm told if I just tried hot enough that I would be able to do it. And someone who has been eavesdropping offers assistance and actually gets a screwdriver from someone else takes the, takes my license plates off. And in the process of that we're talking. And he reveals to me that he's just gotten out of prison and he is getting his license renewed after being in prison. And I think about how Jesus showed up in the form of that eavesdropping ex-felon that day. And I just wish that Jesus would show up in churches sometimes as well.
Amy Julia (14m 15s):
I was just resonated with that story. And you described this, that like he knew what it was like for the system to not believe that he was worthy of whatever it was that he was just simply trying to do and turned that into an opportunity to help another, you know, a fellow traveler. Right. I'd love to talk a little bit about, you mentioned chronic pain and also that not all disabled people are in pain. So there's a distinction. And I think we often conflate the two and it's somewhat similar to conflating. Maybe we can talk about this too.
Amy Julia (14m 55s):
The idea of like sin or brokenness and limitations, which I think is what a disability without a disability can exist without brokenness. Right? I mean, not that all of us aren't broken in some way, but that doesn't necessarily have to do with the disability. So there's like this layering of pain, sin, disability, and they're not in limitation. They're not all the same. And so I'm just curious if you can speak a little bit to the idea that well, to how you experience pain as it relates to healing and prayer, is that because you've talked about my body is not a prayer request, right?
Amy Julia (15m 37s):
Like I don't need to be in a body that is ambulatory all the time in order to be whole, I do not need that in order to bear the image of God. That's all true. You also don't need to be free of pain for those things. So how does pain fit into your understanding of healing and DISABILITY and what it means to be, you know, kind of in this world, undergrads care, and yet, you know, not in a perfected version of it.
Amy (16m 5s):
I think of my pain as a Pratt. And I don't mean that when I'm in pain, I pray more, although that's probably true. I think of my pain itself as a prayer, as communing with the experience of Jesus and as being connected to the one who suffers with us and who is compassionate to our, every suffering, the one who knows what it's like and who is beside us in the process. When I say that my buddy is not a prayer request, it's really asking for people to undo their able ism, which I realize we didn't define before, but is a system that places some bodies and minds, as better than others, it creates a hierarchy of bodies and minds and says that disabled bodies are not as worthy, but we can see how that's also connected to ideas of excellence and productivity and normalcy and intelligence.
Amy (17m 10s):
If we're saying that this body mind is better than that body mind. So when I'm approached by a stranger who just by virtue of my wheelchair or cane wants to pray for me, I find that really different than being in a community that knows and loves me where I talk about I'm dealing with this pain this week and would like prayer. I'm not at all against prayer and pray regularly. But I think about prayer as communing with the living God who, who counts out TIAs and who is to us suffering the problem, I think, and the ableism I think comes from when we conflate that with disability.
Amy Julia (17m 59s):
Yeah. I, you know, I don't know if you know this, but have written a book about healing recently and in it really wrestled with the problem of pain. Because again, I've kind of gotten, I've gotten a lot more clear about DISABILITY and yet pain and especially pain that remains because when we look at Jesus in the biblical stories of healing, I don't think actually undoing disability is a focus of Jesus's healing. I do think that relieving pain and entering into people's experiences of pain, but, and physically, I think that's going on, there's obviously a lot more going on in terms of spiritual, emotional, and communal healing.
Amy Julia (18m 40s):
That's happening, not only in the location of the person who is sick or in many cases, actually disabled who Jesus is having a healing experience with, but that pain was really a point of questioning for me. And what was helpful were two things like one, the sense that pain at you said pain as a prayer, which makes, is a more succinct way than what I have been thinking, which is kind of pain as bearing witness to the brokenness of the world. And that, for some reason, you know, and some of us carry pain that can be relatively easily cured actually, like not even just through an Advil that kind of erases it, you know, for four hours or something, but where it's like, oh, we can get rid of that and you can feel better and others to carry chronic pain.
Amy Julia (19m 29s):
And I think there's a lot of shame in our society associated with pain. As if, if you just thought about this differently, you would feel better. And again, there can be some truth to that. I've experienced back pain. That really was a mental, like I needed to go to God and a yoga teacher with some of some mental issues that helped my back. So it's not, again, not to say that's never true, but then I also know people who are in chronic pain and it really is not at all about them, like having not meeted a need for emotional healing or not prayed with faith or whatever it is. So I just appreciate that. And I do think that bringing in some of the stories that are of disabled people within the Bible that we don't think of in those terms, and you start in the old Testament.
Amy Julia (20m 21s):
And I'm just wondering if you can talk to us about the story of Jacob with kind of these things in mind, as far as oh, disability is not always signaling a need for healing, right. Even in the Bible, that's certainly true in our world, but even in the Bible, can you, can you speak to that?
Amy (20m 40s):
Yeah. I also, sometimes the pain is the ableism and that is something that we can
Amy Julia (20m 47s):
Do something about
Amy (20m 48s):
Amy Julia (20m 48s):
Yes. And the healing needs to happen in the society. Yes. Not in the body. Yeah. I a hundred percent.
Amy (20m 56s):
So when people talk about, oh, I wish there's something I could do to support you. There is, you know, start undoing the whack of ableism in your own life and in your spheres of influence and invite others to go and do. Likewise, I think that disability has been erased in so much of the way that we tell the stories of scripture, probably because of ableism, even unwittingly, that people are uncomfortable with disabled buddies and people just, maybe don't even think about these stories as portraying disability, because we have been taught them in using other language or in other contexts.
Amy (21m 37s):
The story of Jacob is one that is really, it's one of my soul stories. You know, those ones that you just carry with you and really speaks to you on a deep level, because we see that he is really living that myth of scarcity that is really common in our wealth for non-disabled people. He's trying to accumulate stuff and prove that he is worthy of cat and love and attention by amassing more and more stuff. And working on this hamster wheel of proving that he is somebody. And then he has this encounter with an angel or God described differently in different additions where they wrestle all night long.
Amy (22m 22s):
And Jacob comes away with a healing limp and a blessing. And typically I've been taught this story as the limp is punitive and negative a way to put Jacob in his place. But that's not really how it reads in scripture. Jacob himself calls the Lord gracious from the encounter. And this is his transformation from being a workaholic coding liar, to transforming into someone who claims who he is, understands his interdependency with God, and is now able to understand his brother Esau as an image bearer.
Amy (23m 8s):
Right? And then later when we catch up with him and Hebrews 11, he's leaning on his walking stick and blessing the future generations. And that's in the cloud of witnesses. And I'm so grateful that it's that because it gives me a different vision than I have been given by the church of what it means to live a life of healed blessing. It includes disability. In this case,
Amy Julia (23m 33s):
I've told this story perhaps on this podcast before. So if you're a listener, who's heard it before. Sorry, but I have a friend Jessica who has cerebral palsy. And when my daughter was first born, I was really stuck on the will. She have down syndrome in heaven question. It was just, it was just a way I knew that there was something wrong in the way I was thinking about stuff. And that was a helpful, ultimately way to examine my thinking, but I was really stuck on it and I was talking to her about it. And I was like, Jess, like, are you going to have your canes in heaven? And she was like, I've never thought about that before. And I was like, what do you mean? And she's like, well, my canes are what I use to walk. And in heaven, I'm going to be face-to-face with God.
Amy Julia (24m 16s):
That's what heaven is about. And it just, she literally was just like, what are you talking about? Like, I don't know if all my canes or not, but that's not the point. And it was so helpful to me in terms of, oh my gosh, for my entire life, I've thought about going to heaven as if I'm going to become actually wonder woman where were invincible and don't need anyone and can do it all myself. And it's like, that's the antithesis of heaven. So if anything, it's more likely that I would have a cane in heaven because I am so clearly able to be dependent upon other people to admit my limitations, to receive and give the love and the giftedness and the needs that are a part of who I am.
Amy Julia (25m 0s):
So I don't mean to make a claim about whether or not I, or anyone else will have a cane in heaven, but I just think that's such a beautiful, detailed to notice. And to point out, which goes also to the parable in Luke 14, which you also referenced where the banquet table that Jesus describes is not all the healed people, quote unquote, right. Or all the cured people who have come, but the lame and the blind and the like, as they are welcomed and rejoicing at the table of God. So those are, I think again, just some stories that really helped to helpfully complicate this picture for us. I also have been wondering lately, I'm curious if you've ever thought of this.
Amy Julia (25m 42s):
You know, Paul on the road to Damascus, to Saul on the road to Damascus is blinded by light. And then throughout his writings, we, he writes about not being able to see very well like here, you know, he's he writes about having poor eyesight and he never says before that experience with Jesus, I could see everything, right. Like we don't know that it's, but it's like, God essentially like afflicted his eyes as, and that was his conversion. Like that was what allowed him to see was when he went blind. And from there on, he writes about not being able to see with his eyes.
Amy Julia (26m 23s):
And I don't know if that was his thorn in the flesh and like what God said, no, I'm not going to take it away. But I just, as I've been thinking about Jacob and that sense of like, no, the limp is the blessing. Like, because it's just this mark in your body of the fact that God is not giving up on you and that you receive your blessing from God and not from all your achieving and scheming. So anyway, that's just been one of my like new thoughts, which we'll never, you know, can't prove it. But at the same time, the fact that Paul's eyes were his conversion, you know, part of his conversion story. And then he writes about not having great eyesight. I really did. It did make me pause and wonder whether there was a similar story happening for him.
Amy (27m 7s):
Yeah. And that in all of those cases, the banquet in Luke 14, Jesus talks about inviting disabled and poor people fast. And then doesn't mention that that cured or changed their access needs a nets. The access needs are met. And that's exactly why that's the pitcher of new creation because it's not this space where in my mind, and in my understanding of scripture, it's not this space where our bodies magically transform into these 26 year old beach bugs. You know, that everyone kind of talks about heaven in that way.
Amy (27m 50s):
It's that we are so in awe of the grace and the love of God that we can't help, but send to others, include the marginalized and be into dependent on one another and recognize our own limits. And that's one of the gifts of disability as well. That's true for all humans, regardless of whether you're disabled or not, is that you can't do everything by yourself and our buddies need, have needs and have strengths. And those shouldn't be shamed. Those two to be met without condemnation,
Amy Julia (28m 29s):
Amen to that. And I'm also, I've got one more of my little Bible nerd questions for you, and then, then we'll move on. But this is, let's see, on page 61 of your book, if anybody has it with them, you are writing about Exodus four 11 and mentioning in that that Dodd makes people according to Exodus, four 11 mute or deaf seeing or blind. And then you write that God takes credit for how God makes people. Right. And I think most people read those verses and think, oh, I don't know what to do with that. Why would God make someone that way? Is that a punishment? Right? But I also kind of in the same vein, you write disabled people, bear God's image, not despite our bodies, not once we receive our new creation bodies right now, disabled people in wheelchairs using their ventilators and communicating in diverse ways, radiate God's image to the world.
Amy Julia (29m 27s):
So I think that, I mean, maybe that's just a summary of what we've been talking about for the past little bit, but I really appreciate you just kind of pushing on that point because it is a re-imagining, which of course is what Jesus is also trying get people to do in looking at where God shows up who God is not just with, but in, in such an intimate way that Jesus can say that is me. And, and I think the fact that, that going back to that verse from Exodus, this is not about God afflicting some people and lifting up others. I think that's what you're getting at there. But yeah. Is there anything more you want to say about those verses?
Amy (30m 7s):
Yeah. I pitched you that as God being a proud parent, you know, God's saying, look, I make people this way and that, and it's glorious. It shows my work to everyone else. That's really hard for people who haven't grown up in a context where disability is able to be anything other than sinful or harmful. And I would invite for us to really just sit with that discomfort and to look out to nature. We see so many examples of creation that we would connect to DISABILITY and we praise those examples.
Amy (30m 51s):
It's just when we connect that to humanity, that we have an issue. So a few examples are that kangaroos hop, they can't walk and they can't go backwards. Or that sharks don't speak the sound we think of when we think of shocks is from Jores or that elephants are born blinds, or, you know, there's, there's so many different examples of even thinking about spoonie life and this idea of having low spoons or low energy on certain days and not being able to get out of bed. That's similar to a lion who sleeps all day, except for the one hour they hunt.
Amy (31m 34s):
And we think lion's a fierce and fabulous, but when I can't get out of bed, it's sad. So I think looking at the canvas of creation and the beautiful way that even the trees are crooked and JAG kid, and my buddy is crooked and jagged too. And it too is beautiful.
Amy Julia (31m 58s):
I love that. That's really helpful. And I, I read a book this past year called wondrously wounded by Brian Brock. And it's really beautiful on this point because he goes back to Augustan and says that he was basically like, wait a second. All these people who've always said that disability in a kind of pagan call it a culture means either something demonic has happened or, you know, just, we need to get rid of this baby. Essentially. He said, we need to ask, what is God doing in this beautiful creation in this wonder, what is the wonder, like that causes questions we don't understand necessarily because we do have a typical understanding what bodies are supposed to quote unquote, be like.
Amy Julia (32m 43s):
And yet the fact that his Christian imagination allowed him to say, wait a second. I'm pretty sure that every single baby that's born is created in the image of God. And so what that means is that I'm the one who doesn't understand, not that God did something wrong here or that this part of this person is not a part of God's creation. It's only this other stuff that is, and that was really helpful to me to, to recognize that this is not just like, you know, in the past 50 years, we've had these movements in terms of, and leaving like the word ableism, which is a relatively new word. And, but to be like, oh, like Augustan was talking about this in different language, but nevertheless, having a recognition of what does it mean to actually claim that we are fearfully and wonderfully made by God, all of us in, and as we are.
Amy Julia (33m 37s):
And, and to know that actually there's a lot of scripture that backs that up, but we do need to have like a lens to be able to see it that way.
Amy (33m 44s):
Yeah. And that my disabled buddy holds secrets, that neurology is still discovering and maybe the rest of humanity is still discovering them too.
Amy Julia (33m 55s):
And which I think that is so true, obviously there's, we haven't talked much about whether there is a distinction that's meaningful between physical and intellectual disability. And I'm curious actually what you think about that. But I also see that when we talk about whether it's autism or down syndrome, but the kind of a different way of thinking being in the world with your mind, right. Instead of seeing that as a deficit to say, what can we all learn from this way of being? So, yeah, I am curious though, it was just kind of a little aside, like if you think there's any meaningful distinction between physical and intellectual disability or yeah.
Amy Julia (34m 40s):
How you think about that?
Amy (34m 43s):
I think the only meaningful distinction for me is to be able to talk about the different challenges of ableism that each of us face, because there are unique experiences and unique barriers to different disabilities. But I think that I try to use the word or sort of the compound word body minds as a way of inviting us to undo this. Mind-body dualism of thinking that our minds and our bodies are distinct and separate because our minds are in our bodies minds, a part of our buddies, they all work together.
Amy (35m 23s):
And as you've already identified, sometimes our buddies respond to what our minds are doing too, and vice versa. So I find that using buddy minds is a way to also be inclusive to make sure that when we talk about, we're not just talking about visible disabilities, we're also talking about hidden disabilities. We're talking about dynamic disabilities, intellectual disabilities, all different types of disabilities, because the truth is that we all have access needs and those should all be met with CARE and with compassion. Yeah.
Amy Julia (35m 59s):
Thank you. I I'm kind of related, I think to that question, I have written thought talked a lot about the way in which having a child with down syndrome has helped me to understand what it means to have a common humanity, because I have been, I have understood in a new way, what it means that the image of God is in all of us and that is not reduced or impeded. It might in fact be enhanced by disability. Right. Like, so I get that. I also think there can be a problem in using the language of common humanity, because it can essentially say I'm going to ignore or Gaslight the reality of living with disability in our particular culture.
Amy Julia (36m 44s):
And so I'm curious how you think about that tension between we are all image bearers, like, let us stop putting people into these categories of like more broken or more redeemed because we get that actually, especially with people with intellectual disabilities, like again, more broken or more angelic than everybody else. Right. And yet still attending to these particular needs that if we say, oh, they're all the same, right? Like we're all the same. We all just need Jesus. Right. Like we can lose some of that sense of like, yeah. But I can't get in the door because there's not
Amy (37m 21s):
Amy Julia (37m 21s):
Ramp here. You know? So I, yeah. How do you think about that idea of common humanity?
Amy (37m 28s):
There's so much spiritual bypassing with it because it is often used in my experience as a way to reduce particularities and push them off into some future time that we don't actually have to work towards making our church or our small group or our culture less abelist and more inclusive. So that's one of the problems I find with it. Another issue I have with it is that I think of disability as a culture, a culture that is an embodied experience that contributes to society that non-disabled people can learn from and participate in, regardless of whether they've had that embodied experience themselves.
Amy (38m 15s):
So what I would love to see is the shift from talking about who's disabled and who isn't in terms of brokenness and coming humanity and inspiration porn and all of those aspects and move into a space of thinking of disability as a culture that we all get to learn and, and participate in. And some of us who have the embodied experience of disability get to lead the way
Amy Julia (38m 44s):
I resonate with that in many ways. I want to pause for a minute because I think it's an important point that not everyone will know what inspiration porn is, but I think it's a really important point to explain. So can you just explain it, inspiration porn
Amy (39m 0s):
Inspiration porn is the idea from may soon say EAD and Stella young that says that disabled people are often treated as inspiration. Only. It turns us into objects that are consumed rather than subjects with their own lived experience and messy lives. And it essentially uses disabled people just for non-disabled people to feel good about themselves. So we see it a lot of times in commercials or ads that feature someone who is visibly disabled. And then there'll be a phrase such as what's your excuse or there'll be this music playing to tug on your heartstrings and make you pity the person that you're seeing who's disabled instead of actually working together to make sure that we are making every space we're in more accessible.
Amy Julia (39m 57s):
Well, and you also write about the kind of trope of being the overcomer, right? Like you're either the pitied one or the overcomer. And it's like, well, wait a second. And I think not other marginalized groups would, I think have similar experiences in terms of like, I'm not trying to be exceptional, I'm trying to be human. Like why can't I be human? And, and that, I think also speaks to that. And I'm curious within all of that. So I want to talk as we come to an close about like churches as communities of belonging or whether they can be, but before we get to that, I'm curious about the idea of like affinity groups, you know, being able, I I've talked with my friend, David Bailey, who's been on the podcast a number of times, and he's a black man who does kind of reconciliation work within the church when it comes to all sorts of things, but including race.
Amy Julia (40m 48s):
And he's talked about just the need for spaces, where he is just with other people and probably to your point about a culture, they don't all have to be black, but at the same time, there has to be like a deeply shared common understanding of the experience of being black in America in order for that to be just like a totally safe space. And so in, there's kind of this idealized and I think a good vision of no need for an affinity group for anyone. Right. And yet the reality is that there is such a need for people who are experiencing marginalization to have to just like explain at every turn, why that thing that you think of as like a little thing that you said, and why do I have to make a big deal of it?
Amy Julia (41m 39s):
And like, as you said, when you have 2000 mosquito bites, you are dying. And so yeah, you think it was just one more mosquito bite? Well, guess what it wasn't. So I, which I thought was a great analogy, but anyway, I'm curious. What, like, what do you see as the role for affinity groups like for places and spaces that are kind of separated from that typical population? Intentionally
Amy (42m 8s):
I, to hope for a day where we don't have to have affinity groups because we have all grown in respecting one another's distinctiveness and in making sure that we really do value the beautiful diversity of humanity, but unfortunately we're not there yet. And affinity groups can be a way of allowing for that to be a space that you can have a shared experience. And for people to kind of know the in talk or the, the, it's almost as if you're speaking in CliffNotes with someone, you don't have to read the whole book.
Amy (42m 49s):
You can just tell them the cliff notes version. In the, in my book, I have these lists at the end of every chapter, these top 10 lists of wacky and wild stuff, people have said to me, everything from recommended remedies of eat more kale, hit your other leg with a hammer. Somehow I'm still disabled after doing those things. And that's a light way of showing really the absurdity of things people say to me on an everyday basis. So affinity groups can be a breath of fresh air in not really receiving those comments. And also they can be a way of reminding yourself that you're not alone because so many people have reached out to me and said, that's been my experience in church too, or I know exactly what that's like to be prayed for and it's exhausting.
Amy (43m 40s):
And so that can be that kind of collective understanding that is in affinity groups that is harder to really gain in spaces that people don't yet have an understanding of disability beyond that medical model.
Amy Julia (43m 57s):
And that makes a lot of sense. I'm curious about and do want to kind of land here, the idea of creating communities of belonging. And there is, you know, we've kind of mentioned some architectural ways in which that might happen as well as some theological shifts. I'm curious if you've ever experienced a place, whether the church or not, that is like, yes, this was a community of belonging. And if so, what that was like, and if not, what you think it would be like,
Amy (44m 28s):
I've certainly experienced glimpses moments where someone gets it and wants to co create with you to make sure that the space is accessible and, and welcoming, and one of dignity for disabled people. So I've experienced glimpses. I think sometimes when we talk about what this space looks like, we want to think about a checklist, or we want to think about how can I make this happen in my church? What are the lists of do's and don'ts, and it's more complicated and messy than that because access needs shift over time.
Amy (45m 10s):
And who's a part of the community shifts over time. So I think the main thing is having a willingness and an openness to grow and be open to whatever access needs present, and to meeting those without complaint or without thinking about, you know, that's going to cost too much or it's not worth it. Cause I've been told that quite a lot. I think it's more important to receive with an open spirit of generosity than it is to strive for perfection because that's never possible anyway. So I can think of many times where someone has used, enable us to slack and caught themselves immediately and said, I'm sorry, I caused you a mosquito bite.
Amy (45m 54s):
And that means more that they recognized it and that they recovered because there's cause grace abounds and we all need grace, right. But it is having the willingness to change. And to be that sanctuary for one another through one word, one space, one moment in time, it's recognizing that disabled people with the cost of inclusion,
Amy Julia (46m 21s):
I think we're going to end it right there recognizing that disabled people are worth the cost of inclusion. Thank you so much for your wisdom and your words and just your willingness to share from your own experience, but also the thought that you've put into not just your own experience, but what this means for all of us who really, and, and it's not just all of us who want, you know, my daughter or a person who is using a wheelchair to be included. It's that we also, if I'm in a typical body and you know, a neuro-typical mind, I still need to know that I am welcomed and included, not because of the way my body looks or the way I can perform, but because of that sense of, we, we recognize each other as the people who have been blessed and received and created by God.
Amy Julia (47m 16s):
So thank you for the work you're doing to make that a reality.
Amy (47m 20s):
Amy Julia (47m 25s):
Thanks. As always for listening to this episode of Love Is Stronger Than Fear. You can find out more about Amy, Kenny and her new book. My body is not a prayer request in the show notes, and I will remind you to also check out the audio version of my book To Be Made Well and follow the link in the show notes that will tell you how to put your name in the hat. So to speak for a chance to win a free copy of that audio book. I'm always grateful to Jake Hanson and to Amber Beery for making this podcast happen. And I'm thankful to you for being here. So as you go into your day to day, I hope and pray that you will carry with you. The peace that comes from believing that Love Is Stronger Than Fear.