Today I am thrilled to share this engaging and enlightening video conversation between Allison Backous Troy, writer and vlogger at The Shared World, and Summer Kinard, author and blogger at Words in Season, about Summer’s newly published book, Of Such is the Kingdom: A Practical Theology of Disability, from Ancient Faith Press. This exceptional book is a book for all of us in the church who need to tools to help us make sure that everyone, regardless of ability, feels they belong to the church.

With eloquence, deep theological knowledge, and a sense of humor, Summer shares with us in this interview her own path growing up with autism, the daily graces she sees every day with her autistic children, and the reality that “The tragedy of my life is not that I’m autistic or that my son is autistic.” Summer reminds us that the tragedy of life is that “I can’t overcome my own sins or even see them most of the time.”

A transcript edited for length and clarity can be found after the video below.

Allison:               My name is Allison Backous Troy and I’m so excited to be able to host this interview with my friend Summer Kinard on her new and wonderful book Of Such Is the Kingdom: A Practical Theology of Disability. Summer is just a wonderful person and I’m so glad to be her friend,  and I’m so honored that Phoebe is having us share this video on her blog because I think that Summer’s book is really life changing for this time in the church, and for people across a wide variety of Christian spectrums. I’m just really honored to be able to just sit with my friend and talk about this beautiful book.

                             So we’re just going to hang out and answer some questions and hopefully it will give you a really rich taste of what is here in this book that Summer has been taking care of and nurturing and putting together for a really long time.

                             So I wanted to open our time with this quote from your book and the reason I wanted to open it is that when I was reading the book, this really stood out to me as like an example of the driving purpose of this book. And I wanted to share it, now that the book is out in the world, and seek your thoughts on it. What this quote is, is a description of right after your youngest son, Basil had been given some serious diagnoses:

                             “When I began the process of writing this book three years ago, I was facing the prospect of teaching my fully nonverbal youngest son about the life of faith. I remember standing at the icon corner after we received the results of his earliest evaluations. The ones that showed him at the bottom of the scale of communication ability among other challenges. I’m looking for my dear son through the cross in the wall, here is a child given to me by God, a miracle child who severe birth defect had saved his life from an even worse a birth defect.

                             And a group of experts handed me a page with a few pictures it and the advice, maybe he’ll be able to associate these pictures with things that he wants, but the images of what I wanted for him were right in front of me in the icon wall. I wanted my boy to know God.” That’s just such a powerful quote because I think that regardless of what our families look like, that’s what we want for our children, what we want for ourselves. How does this quote strike you now?

Summer:            Well, so I’m supposed to be recording the audio book for this and I have cried at every single time I’ve tried to say this.

Allison:               Well, it’s so close to you.

Summer:            It’s so close. That was such a powerful moment for me. I studied for so many years the Logos, Christ, the Logos of God, the Word of God. Then to have a child who couldn’t communicate and to have people also say to me sometimes, well meaning, but little nonsensically that everything is about reason, and it’s about understanding. And I was like, you know, yes, but not the way you mean it. And it was hard for me to put into words and I was like, there’s something here. There’s more to the image of God than being able to recite poetry. There’s more there and wanting him to know God.

I went on in that passage (I think that’s where I was talking about the miracle that happened after that where my son, I went and I tell people, I said in the book probably that I prayed, I don’t remember how I put it), but I don’t think that God is somewhere else.

                             So let me just make that blunt. I don’t send my prayers somewhere; my prayers may arise like incense, but they could be making God sneeze because He’s right here. So for me it was, I went to the icons and I looked at Jesus and the Theotokos and I remember I just looked at Jesus and I was like, “You make him, you make him do this, you give him this.” And it was not some piously worded poetic request. It was really the boldness of a mother and it was just right out of my heart right out of love. And I don’t think that God doesn’t want us to have that.

                             So it was, I went and I said, “You put this word in his heart, you put your love there and teach him how to talk, how to read.” I think I said reading. And it was amazing because even though that was a little bit of a ridiculous request, even though my request was like out there and over the top, the next day my son wrote Hodegetria on the board in magnets and we were like, “Did this really happen?” Like are we just doing that thing where moms and dads are like “oh you said Gaga, that means ‘grandma’ right?”

Allison:               But this (Basil’s phrasing) is very complex!

Summer:            Hodegetria is the English spelling for the Greek word for” she who shows the way” or “the directress,” that icon.

                             It was the icon of the Theotokos that I’d sort of bossed around that he was referencing. And so here and then we thought, well let’s just wait and see. Let’s take a picture and I can’t find the picture now. Like of course it got lost or it might be somewhere. But then two days later he wrote on the board, go downstairs. He would actually spell out those words because that’s how he told us he wanted to go outside and play. It was in those moments of suddenly realizing that God was with us in his disability. It wasn’t just that He was with us and I already believed He was with us, He was with us in the disability, and that my son’s disability was going to somehow reveal the presence and the glory of God.

Allison:               … with you?

Summer:            Yeah. So that’s what it was. It was what it still is.

Allison:               I have like chills right now!

Summer:            It was an amazing moment.

Allison:               That’s like a Holy visitation.

Summer:            It was really good.

Allison:               It really is.

Summer:            Yeah. And (in comparison to what the therapists said Basil was capable of), it was ridiculous.  (His resource sheet) was like two pictures of a spoon and I had told the therapists that he liked it when we sing songs. So they put “twinkle little star” on it and “the cow jumped over the moon.” That was the extent of what the therapists said he could do. It was like nothing.

And now they were doing the best they could, but this is one of the things – a lot of families don’t have access to good therapy. Thanks be to God I had the state person that I was working with; she told me “we’re not allowed to recommend therapists because it’s against the rules; what I’ll tell you is who I’ve worked with and who I haven’t worked with,” wink, wink. One of the two or three people she’d worked with, I said, well, let’s go with her because she seems to have this background in people with communication challenges. We wanted (to work on) everything.

His therapist came in and we tried to get him to communicate. We tried these games and he just didn’t understand anything. It just wasn’t sticking. We got him to play a game one time and then he immediately couldn’t do it and nothing was working. So she said, “I have a hunch.” And I was like, “Tell me what it is.” I knew when she said that I was like, yes. And she was like, “most parents are really reluctant to do more work.”  And I wanted the work! I was like,” tell me what I can do, tell me something to generalize.”

                             And she brought me this language system called a POD, which is Pragmatic, Organized, Dynamic display. (Everything in speech therapy and autism is like an acronym.) It’s an entire language system and pictures. And it was a flip book and you had to model it and teach and then I was like, “let’s try it.” She brought a little miniature one with just a few pages and she was like, “let’s just see how he does.” And that first day he learned the word go. We pointed at go and then he went down the slide. “Can you go down the slide?” He did. And we had this cart that we would push him in and we did go. And he started pushing his button on his car to say go. And he would point at it.

And so all of a sudden he understood that there was a thing called language and it was, with go. He had no language before that and it was like, yes.

Allison:               And go was his word. I love that.

Summer:            That was his first word. He had go and then it took him a little time and then eventually he had (the phrases) “I like this,” “I don’t like this.”  I was insistent that as a two year old, he had to have (language to express emotion).

But if you want to know something about me, I honestly just think that I just don’t know anything. My experience is I go to God and I say, “I don’t know what I’m doing. Tell me what to do or teach me.” And then I suddenly understand it and then I know. So with (Basil) it was the same thing. I was like, “God, what do I do?” And it was (in talking with this therapist) that God taught me and I said, “Oh let’s teach (Basil) this way.” And so my son, by having an emotional language, his meltdowns went almost entirely away. Because we started with that and then we started with things like “I like this, I don’t like this, this hurts” or “I’m upset” or whatever.

Summer:            And he immediately would calm down because somebody understood him. And all these things just built up. Anyway, it was this amazing moment but then immediately I started to realize I needed to use this communication ability for the faith. And that was sort of the beginning of my path of making a bridge between people who couldn’t communicate easily and the word of God. Then that sounds weird because it’s like, of course God’s the bridge, but you build, you prepare the way of the Lord, you prepare.

Allison:               And this is a way of preparing?

Summer:            Yeah, yeah to make straight in the desert highway for our God. And this is a desert and it’s hard.

Allison:               Correct me if this is like a wrong paraphrase, but this life of living within a family that has various autism diagnoses, various visible and invisible disabilities, the way is hard – like a desert.  I feel like not enough people really understand what family life is like for people who deal with disabilities.

Summer:            And it’s hard because most of us don’t talk about it or if we do, people wouldn’t believe us. There’s one thing I don’t like. You’ll get these people who come online who are attention seekers, like there are moms who put on like a 90 minute makeup job,

Allison:               And they’re like in their car and like, “Let me tell you about my day.”

Summer:            And they’ve got like their brand new nails and they’re blinged out. And you’re like, “Really? Your life is … ” It’s hard to believe that sort of thing. And then they post like this, “I’m so sad. My son is autistic.” And those people I cannot stand because they’re lying, that’s why not. For any other reason because they’re trying to get attention. If you want attention, go get attention, but don’t pretend that that’s the point of this. The tragedy of my life is that I’m a sinner and that I’m really bad at stopping that.

I keep on messing up and I can’t overcome my own sins or even see them most of the time. The tragedy of my life is not that I’m autistic or that my son is autistic. I struggle and my struggles are in that context of an autistic family, but you know if everyone is loud and I’m overwhelmed, yes, I have to give myself grace and say maybe you have to go through. Did you just curse because you have a bad habit? Did you curse because it was echolalia where you accidentally repeated a word that was nonsense and you could maybe switch it out for a different nonsense word like what was it, fraggle rock? Can you say fraggle rock instead, Summer? Or like did you curse because you’re mad and you need to get that passion in check.

Or was it grief, was this PTSD? What is the reason why are you acting like this? So I may have to in my own life with my own struggles with sin or passions, I may need to discern because I have to ask the autism question too. But I never have to ask the question, am I sinning more because of my kid’s autism? No, the answer’s no. If there’s a sin it’s my struggle for whatever reason. And sometimes it’s something that is really beyond my own will. Sometimes I don’t mean to, and I sometimes can’t help it.

Like if I yell, sometimes I’m like, “I’m not trying to yell. I can’t regulate my voice right now. Give me a second.” And like if someone requires a response and I hit a wall in my autism of apraxia, I cannot control my voice sometimes. Sometimes it won’t come out and sometimes I yell!  Our family can be really funny sometimes: “I’m not mad, I’m just yelling because I can’t understand what’s happening.” “Me too. We’re not mad at each other.” “Okay.” And it’s like, “Why are we yelling? Let’s all stop.”

                             We could have that kind of moment. But the thing that people … that’s like the humorous inside take on what are my problems kind of thing. But in general, we don’t have any free time, we don’t have any money. We’re always broke. And this is not just us. We don’t have a bad income and we’re not unfrugal and we’re not irresponsible financially. But we have therapy, we have therapeutic things we had to put in the home. We have special foods we have to buy.

Allison:               Which are expensive.

Summer:            They’re expensive. We have food allergies and this is the other thing, autistic kids some people say, “Well you are just spoiling them, you’re picky .” It’s none of that; whatever you read on somebody’s nasty Facebook post (about autism and selective eating) is a lie. When I was a kid, this is what food was: round. I loved round things. I would eat it if it was round. Now that sounds really crazy but it’s true.

                             So I loved potato chips because they were sort of round. I would eat a sandwich because I would take the sandwich and I would bite it into a circle and then I would eat it. But I would like nibble it until it was round and I did that out of survival because I was hungry and it wasn’t round. I loved to drink milk because it was in a round cup and this may sound completely wacko and this I obviously don’t do this now, although you did see me drinking a cup of tea and I did serve you scones!

Allison:               You did and they were awesome.

Summer:            That was round two. But I now no longer eat only foods that were round. But when I was a kid I had a really hard time with foods that were different shapes. And even though that sounds weird, my brain wouldn’t process it as food. So my parents looking back, I’m like, I can’t believe they figured out how to feed me. It was the 80s. It wasn’t a diagnosis, they just thought I was a just really picky kid and they were worried about me and they were like, how can I feed her? And so I would get Ritz crackers. We were poor so (we had) bowls of ramen or SOS, which is a meat and gravy thing on toast and beans and rice, things like that.

I don’t know what was up with my brain, that’s just how I was. And I was like this little malnourished little kid until I was about eight or nine and suddenly I would accept other foods and then I was fat  because my body was like, “Oh my gosh, she’d never eat.” So I had a famine metabolism at that point. So take it seriously if someone says, “No, my kid will only eat these five foods.” It’s not,” oh, we’re some sort of stupid people who never thought of introducing broccoli 75 times in a row.” Or “oh gee, I’m lazy and I don’t like to cook.”

Now I’m an excellent cook. I’m really good at cooking and baking. My kids will not recognize it as food and they would die. They will literally die. My son who drinks the bottle at the age of five and a half cannot drink any other way. And I’ve tried and I’ve tried and I’ve tried and he dehydrates and then he will die. This is a life or death thing. And I think people don’t understand that our stakes are always high. They’re through the roof high. If you miss something, we’re always worried. Like we say, “God grant me many years so I can take care of my kids.” I’m not afraid of death. I need to take care of my kids. I need to take care of them – who is going to teach them or give them their abilities?

                             And so it’s food. It’s safety, which is a major, big deal. I can’t go a lot of places with my kids because if my son runs away, he’ll die. He won’t come back. He doesn’t know how. And when he goes silent, he’s scared, and I have a daughter who does that too. They just shut down and they can’t talk. I have one medically fragile child. So if I say to you, “Oh, are the kids at this homeschool, co-op vaccinated?” And you say, “No.” I’m like, “I’m sorry we can’t participate.” I’m not being an anti-vax or pro-vax fighter. I’m saying, “If my kid gets this disease, he’ll die.” The stakes are really high for us.

Allison:               And like this all the time. Every day, every hour of the day.

Summer:            All the time, everything, food, safety, where are we, where can we go? We do go to church every Sunday, which a lot of people think is impressive and we’re just like, *shrug*, but we just do it. We skip maybe once every few months or if there’s an illness, which is something you can’t help it if you’re ill.

The stakes are so high and then when you do get to church – for me this is a thing – some people think autistic people don’t notice social things, but usually it’s the opposite. They usually notice them more and it depends on the person. For me, I had complex PTSD because I grew up in a very traumatic home environment where reading people’s body language was necessary for survival. So I would have gotten killed a lot of times. So for me I recognize it right away but what I do since I’m autistic is, I choose to act on what I decide to act on because at all times I have the habit of always having to choose what I think because I have an overly complex brain.

So if someone says to me Summer some simple question, my brain will say here are the 27 or 28 things that they can mean by that. Probability-wise, which one are they asking? And now I’m 42 and I’ve lived in the world and I could usually guess pretty accurately one of the two things that they’re most likely wanting to know. I don’t always get it right but whenever it comes to things like that, if I go to a church and people are like, “Oh that girl is doing something in church, I’m looking at you in the liturgy because you’re weird.” I’m just looking back at them and I’m just like, I’m going to choose to respond to you like somebody who needs the mercy and love of God as much as I do. Because that’s the thing. We always have our choices. And if you don’t have a choice, well then I need to do even better with mine so that I can on your behalf, help you.

Allison:               And also help yourself and protect the people who are around.

Summer:            And there’s been a few times I’ve come across a few hostile people in churches and I tell them like, my kids are autistic, please don’t do that or whatever or they can’t help it. And most people are understanding, there’s been a few people who are kind of mean. But whenever that happens, in order to not judge people, I just think of that old Taylor Swift song, Mean, as my catharsis and I’m like, why you got to be so mean? And then I’m like, okay God, I got it out of my system. I really do pray for people. So if they distract me by being mean to my kids, I pray for them because goodness gracious, you’re being mean to a child. First of all, like you have to have it. And then the other thing is like I hope they’ll pray for me because who knows? Like I know-

Allison:               And that’s a really key thing like in your book that you come back to time and time again. It’s like, if a parishioner or somebody of service specifically is distracted by someone, the best thing to do is just pray for that person and not worry about it. Like, oh this person’s distracting me for whatever reason, Lord have mercy and Lord have mercy on me so I can like participate in the service.

Summer:            It’s a prayer request. That’s what I see.

Allison:               And that’s your response.

Summer:            Your attention being drawn to something when you’re in church is a prayer request. That’s how I see it because what else would it be? Because God’s with us. And so it’s like whenever you learn to pay attention to where your thoughts are headed, which I think a lot of people coming out of trauma have to learn to do. So I have had to do that too.

Allison:               And I mean that’s as somebody who also grew up with a variety of like adverse childhood experiences that’s something that I sympathize with. Because it’s like wow, why is my brain on protect myself mode in this particular situation? I share some of that a little.

Summer:            And I’m also good at like not taking offense on purpose, but I also need to get people not be mean to the kids.

Allison:               Exactly. Yeah.

Summer:            And we are quiet as best I can but we are always moving, doing things like this. And this is because this may look so weird I don’t know what neurotypicals think I’m doing when they must be like, are you playing with toys in church? There’s this thing (pulls out a sensory toy) – feel this, tell me. You’re putting deep pressure on your joints and it calms you down.

Allison:               It does.

Summer:            Even though you’re a normal, you’re a normy.

Allison:               Well I’m a neurotypical.

Summer:            You’re a neurotypical, I’m joking. We don’t call ourselves not normies.

Allison:               But I often will bring like crocheting or knitting with me, like if I’m out and about. And no, I don’t have a diagnosis. But there is a lot to be said about having something that you can manipulate wherever you are. And that’s something I was going to ask you about, like within orthodoxy. Orthodoxy itself is such a faith with physical manipulation and you’re constantly, you’re bowing, you’re kissing, you’re crossing, people are moving all the time. Do you feel like that kind of environment based on like your past experience of like not being in an Orthodox church? Like do you feel like Orthodoxy lends itself to people who have autism diagnoses?

Summer:            Yeah I think it does.

Allison:               Like compared with other traditions – I don’t know if that’s the right question.

Summer:            No, it’s a good question because there are some … let me tell you what the model is because you may not know. For most people, like a Protestant church or mega church or whatever kind of church, this is their model of how to include people with autism. Because I’ve read their books and realized that there was nothing like my book. That’s one of the reasons I wrote it. I was like, does anyone have something? And no. This is what they all recommend. Get a couple of partner people or like a group of them to accompany the person to church and you help them navigate and whatever that means. And they may give you some particular advice and that’s all. But that’s not even what you need and you maybe you do for some things, like you may need someone in a certain situation to help you open a door or help you find a spot but that’s not it. This is what Orthodoxy has – it’s different.

                             It’s a microcosm. Is that the church is set up with the understanding that we humans are a microcosm of the world like a small universe. And the church is and salvation history is and salvation history like it’s like God’s presence with us. This is going to sound dorky, because of course it’s not a fractal, but He’s with us everywhere. But if you go and look for the presence of Christ, it’s like a fractal where you see the same pattern and you see the same pattern everywhere.

Allison:               It goes out and out and out and out.

Summer:            It’s out everywhere and it’s in and in and in, it never stops either direction. And because of that, the biggest thing that people need to know about disabilities is space, space, space, space, space. It’s not just the little things – so let’s say I’m going to pretend to be one of my kids in church, and maybe I have this (pulls out flip book with pictures of icons, liturgy, church calendar, etc)

                             And (flips through book) maybe I’m going to venerate my icon and maybe I’m going to flip through the feast days, and I’m going to go through it and be like, “Huh Jesus, I see Jesus.”  These are also sensory tools that help me to regulate myself. But the thing that teaches me is actually not just those things. It’s the whole room and having a place in that room and moving around the room a certain way. That’s what’s teaching me.

                             As an autistic person, you hear everything and it’s all loud. You filter nothing out. So if I’m in a room, I filter nothing out. But this is the thing, you don’t filter out God. So you don’t filter God out and so (I try) find a way to get through all of the noise and filter it through Christ. You can learn therapy techniques that will help you, but it’s only God that’s going to give you what you need. Therapy techniques can get you to be focused on something, but you can focus on something stupid and go into destruction.

                             So if I go into church, my kids are going to see, without knowing, they’re not going to be able to filter out any of the music. They’re not going to be able to filter out any of the icons or any of the ways that they move in the space. So the good thing is in Orthodoxy, this space teaches you.

Allison:               Yes, and like every single thing in that space has a purpose. It’s connected to the liturgy-

Summer:            And is connected to how Christ saves us and the whole of our lives.

Allison:               Like everything is connected to the resurrection and to God being present with us every single part.

Summer:            And we give Him from His own and He does just what He does. It’s amazing. Everything is so good, but it’s all connected out of that did I answer your question?

Allison:               You did. That was wonderful.

Summer:            Sometimes I get off track.

Allison:               One of the things that you’ve mentioned a few times in talking about going through our conversation is you’ve talked about having autism yourself. Can you talk a little bit about how has your own journey as an autistic person (and people have a variety of ways of identifying autism, “I’m a person with autism, I’m an autistic person,” etc.)

Summer:            And I would say I’m autistic.

Allison:               Yeah. So how has this shaped your encounters with the church and your own spiritual life? Which I think you’ve answered a bit already.

Summer:            So it’s weird – I have a hard time not just telling the whole truth and that’s hard for me to filter. So for me, I have an unusual probably story and that I was born dead. So that’s a little bit unusual and I know there’s some I’m not the only one, but the way my mom tells my birth story is like this. She says, “Well your placenta came out first and then they (used forceps to get) you out and then the cord was wrapped around your neck three times.” And then she was out because they gave her pain meds. And so she said, that they took me over to the side and then a priest came and prayed for me and I’m like, aha! Right in a Catholic hospital, that’s definitely what happened. So now my memory is different and then I confirmed it with my family (unfortunately my aunt and my grandmother had passed.) So I’ll tell you they did see this happen too. My very first memory is of being baptized and being brought back to life. And I just remember hearing the words and that and in the name of the Father and the Son and the Holy spirit. And I’m going to say it wrong if I try to say it because I have dyslexia and in my mind I when to try to say those words, it comes out backwards. I don’t know why. Anyway, but it was “in the name of the Father, Son and Holy Spirit” but in Latin. I remember hearing it, it was like a sing song voice, almost, and I remember hearing it and then breathing and light and this warmth entering me and the sound of water and the feel of water and this light and all of a sudden just rushed into me with life.

                             And I remember that life and I used to, every day for my childhood until I was, I don’t know, five or six, I would dream that (memory). I was a charity case because my mom was a teenager, and this was when they still had nuns and it must’ve been a nun or it could have just been a regular nurse, but I think it was probably a nun who pulled me. Most people wouldn’t be bold enough to get someone who was probably dead, but I was definitely dead. So she emergency baptized me and then the priest came in and when I talked to my aunt and my grandmother later when I was older, I realized what had happened. When I was a child, I just remembered it and I called her my angel and I remember the words and the sensation.

                             And when I got to be a teenager and went to college, I realized what those words meant. I saw them on my chapel wall one day in the stained glass. And I said, wait a minute. That’s what she said. That’s amazing. I was like, “Oh my gosh.” It was like this duh moment. I was like 18 and I was like, “Oh, that’s what this was.” And I suddenly realized that that thing that I had remembered my whole life, that that’s what the big moment. And so I went and I talked to my grandma and I was like, “Were you at my birth?” “Yes I was.” It’s like, “Was I baptized?” “Oh yeah, you’re baptized because you were, you were.” She wasn’t sure if they were dead.  I told (my grandma and my aunt), “I have this memory of coming to life and being baptized. Did that happen?” And they said, “Yeah, I thought you knew.” And so I was like-

Allison:               Wow – how old were you when you had this conversation?

Summer:            I think I was around 19 when I called them and said. I realized it what it was around 18 but I was like really nervous because this is a weird thing. For me growing up in a place where you weren’t supposed to talk about miracles – the Catholic side of my family totally did, but I was in a kind of Baptist sort of place, people who explain miracles away and I was like “this can’t be anything but that, that’s what happened.” And so then when I had my own kids and my mom decided to tell me the story of my birth and the placenta, it was like, “Oh my gosh, that’s terrifying.” And then I understood what had happened. I realized that everything was being confirmed. This was definitely what happened.

This is the thing, it’s all bound up together in my head. What I can tell you is I had a spiritual life from infancy that was given to me as a gift, that I wasn’t getting from my family. And it was a gift given to me while I was autistic. God didn’t say, “You have to stop being autistic first and then I’ll come be with you.”

Autistic people can focus like super focused and I think that was something that has been very vital to me. I was always able to tell truth from lies, which is a gift of discernment. I think God gave me (this gift) out of kindness because I needed it again. And then also it’s something – a lot of autistic people really can’t stand untruths.

Allison:               Well it’s a gift like in our friendship;  your gift of discerning things has been fulfilled to me. You know what I mean? Like I think it’s really wonderful.

Summer:            I’m like, oh gosh, I hope I wasn’t rude.

Allison:               No.

Summer:            I don’t like to ask like, “Hey, is this what happened or is this something else?” “No, it was something else.” “No, it was that.” “Oh, thank you.”

Allison:               It’s helpful!  I want to ask about something I just heard in your response there that I think is really important for people to hear of course in this book. I think sometimes there’s this attitude toward, particularly like children with a variety of disabilities, that God can’t reach them in their disability, that like the language around their diagnosis and their life is very patronizing and sentimental. They’re seen as how you described these therapists with your youngest son. Like, “Oh, he can maybe can point out this little nursery rhyme.” And yet here he is, speaking Greek as a two year old.

Summer:            He could actually read Greek at least back at our old church, in Durham, North Carolina. We had this friend who would speak Russian to him and he seemed to understand. I don’t understand Russian so I don’t know what he said.

Allison:               I’m not a language person at all. Can you talk a little bit how those attitudes are countered in your book? How does your book kind of dismantle this patronizing and damaging idea of like, “Oh, children with disabilities, persons with disabilities, they just don’t get it. They are not capable of a good spiritual life.”

Summer:            And this is another one and it hits home really hard if you have a severe food allergy and or celiac disease.  People will say-

Allison:               Which people share. I have celiac disease.

Summer:            We both have that. So obviously neither of us has faith because we can’t eat “onto their own.”  I’m like, “well thanks for telling me I don’t have faith. Thanks for that.” So no. People don’t usually try to faith heal down syndrome. I’ve never seen that, and I think somehow they understand genetics a little bit enough to not do that, but they try to faith heal a great deal of things or mimic “cures” from the Victorian era. You wouldn’t be autistic if you would just put some lavender, for instance. Did you notice the lavender in this room like how?

Allison:               Yeah.

Summer:            I’m still autistic though.

Allison:               You are.

Summer:            But you’re cured.

Allison:               I like the way that it is not like, “Oh if you hadn’t done x, y,z.”

Summer:            Yeah. There’s this like smuggery and what it is, it’s not an attempt to be smug. What it is, it’s a self-protection and I understand it. Like you want to protect your kid. You want to say, “Oh well I don’t want to go and have a problem with that.” That sounds harsh.

Allison:               Like I see you having a problem and I am afraid of that.

Summer:            There’s a difference. So like if I see somebody who is addicted to a substance and I say, “Geez, I don’t want to be addicted to the substance.” I could take a step. I can not take that substance or something like that. Like I mean I’m addicted to caffeine and I’m going to keep on, because I don’t feel bad about drinking a lot of tea, but let’s say it were a problem. And you would have to come to me and tell me, you need to sleep sometimes.

Allison:               Your savings are gone, you spent it all on black tea.

Summer:            This is a problems and your kids really should have been fed instead of you buying that (expensive tea). If I were having that sort of issue, that would be self-inflicted. Okay. There are things in life that are like that, but they are not disabilities. And I think that’s what people don’t understand is that there’s this cultural thing that’s going on in our culture and it’s not just in this, but this is one of the places it shows up. It’s a toxic reductionism is what it is and it comes up. We see it in politics. Bless everyone’s hearts (so I’m just going to bless everyone’s hearts, I’m not going to talk about politics.)

Allison:               She’s from the South so understand that.

Summer:            People  think it’s mean, but I also mean it sincerely and literally, I want everyone to just calm down and sit down and drink your tea and shut up and just talk to each other and behave yourself. Yeah. I mean like let’s reset here on Christ. That’s what I mean when I say bless your heart. I actually mean literally bless it, like come on, get back on track. But anyway-

Allison:               The literal sense of bless.

Summer:            Yes. And actually saying bless your heart is much nicer and it actually makes people happier. So (there’s the political toxic reductionism), but then you also see this in a lot of other places in life, this prosperity gospel, or “name it and claim it.” If I just think nice thoughts to the universe, it’ll give me good things, which is actually just magic. It’s not. And so people sometimes try to bring that attitude into the faith and it doesn’t go and they sort of set up a set of tests for God and they’ll say, “If you only had faith, you would not have this problem or…” And then it’s actually worse than what they’re really saying, “If God is God and you believe in him, then.”

                             And you get these series of if-thens, and it’s really just people being afraid and accidentally falling into that temptation. We all fall into the temptation sometimes. Haven’t we all set a test for love? Which is not a good idea. Everyone does that sometimes; we all can be a little messed up or dumb, but it’s really damaging for people with disabilities and their families. Because you’re denying their holiness and sanctity. What I do in the book is I talk about in the beginning, I go through and I talk about God’s time and the reason I start there is because when you start with God’s time and you understand that God is acting now, God’s with us now. Everything is incarnational. It’s all about Jesus with this, God with us. When you start there, then you have to acknowledge that people who are here with you are the way God wants them to be right now and He wants them … this body right here is going to be transformed. Not some other Allison that you imagined or that you named and claimed, but this Allison and this Summer right here, autistic Summer with the bad hip is going to be the one who’s going to be resurrected now. How? I don’t know. How’s God going to rearrange me? That’s up to Him. I don’t know. We don’t know how that’s all going to sort out, “behold I tell you a mystery,” all that stuff. It’s definitely, this is the wheat, the little seed and we don’t know what we’re going to spring up into except for that it’s going to be like Christ. That’s so true. But this is not a new question.

One of the things that I point out in the book St. Augustine has this section at the end of the City of God where he answers just a bunch of pastoral questions about the resurrection. He answers the question, what about kids who are miscarried? And I think a lot of people probably think he answered one way, but they didn’t he was very gracious. He said, “Yeah they’re not going to be resurrected like the tiny baby that they were miscarried as. It would be whatever they would have grown into.” So he says, “Don’t be afraid.” And some person comes to him and says, “Well, I’d be fat in the resurrection. I feel like I’m too fat or I feel like I’m too skinny.” And he says, “No, you’re not going to be too fat or too skinny, you’re going to be just the way God wants you to be.”

Summer:            So he redirects every one of these questions back to God and he also does it with disabilities. And he says that somethings that we live with in this life will mark our bodies in a certain way. If it’s a mark that detracts from fullness, it won’t be there. But if it shows our virtue, it will be. And that’s something interesting. So we don’t know how we’re going to be, but it’s good to know that whatever we are going to be like, it’s going to be something that God wants and it’s going to be these bodies. He loves us now and so if you want to be aimed at heaven, if you want to be aimed at Christ and looking for the resurrection and looking for our Lord to come back or our Lord to be with us now, then you have to look at each other that way and to say this body is sanctified.

Summer:            I’m not going to set a test and say, sorry, your kid who has the movement issue, mobility challenge or can’t control his limbs or what have you, he can’t come here because he is not what I imagine a person should be. I’m going to say “this person was made by God and God wants him here and loves him and this is the very person who’s going to be resurrected and I’m going to honor the love of God for him. I’m going to honor the love of God in him, and we’re going to love one another because that’s the only one we’re going to know God.”

Allison:               Yeah. This is our Koinonia together, this is our iconic community.

Summer:            Well, you’ve got to love God and your neighbor as yourself and I don’t think that there’s an idea of self in the fathers. That’s like our modern idea where you self-actualize and you have a list of tasks to make your … that’s not a thing. You self-actualize to what’s loving God and your neighbor. It’s active, you are in community, you’re in communion. You can’t be another way.

Allison:               Right. And I think that’s like what your book does such a wonderful job of is helping us see the persons who carry a variety of disabilities. They’re not cases to be solved. They’re not things to be checked off. They are icons of Christ. They’re our neighbors and our brothers and sisters, they are persons next to us.

Summer:            And they’re members of His body.

Allison:               Yes.

Summer:            And their suffering – don’t be afraid of it because it’s Christ suffering and you entered it too. There’s nothing that you will ever suffer that isn’t His. There’s nothing they’re suffering that isn’t His. It’s all His and you’re His and we’re His. And I think it’s a theological book that’s real theology because He’s the center and it’s aimed at Him. How is it? It really is. I think I saw somebody, every now and then someone will review the book and they’ll send it to me and I’m like, “Oh thank you. You got it. I’m so glad. Thank God.” But it’s this, they’ll say, “Well this would apply to everybody.” I hope so.

Allison:               Yes. What’s so wonderful about this book is that it’s not like “here’s your program for incorporating more people, and here’s a program for like how to deal with this problem.”  This is a book of spiritual reflection-

Summer:            And how we all learn.

Allison:               How we all learn with this particular focus on persons with disabilities because there are so many mistakes that are made in being hospitable to persons with disabilities. And there’s so much that we need to learn in being in community together. It’s not about “here’s some program,” it’s  “this is how we commune together.” This is how we are in the church together and what your book does such a beautiful job of is that it brings awareness of us all being in spiritual journey toward Christ together.

Summer:            And He’s with us. So like, I don’t have a God who’s far away. I can’t make Him somewhere else because He’s not, I mean He’s here and I can never pray somewhere far away. Like I told you as a joke earlier about the incense. If my prayers arise in this incense, it’s going to make him sneeze because He’s right there.

Allison:               He is. He’s right here. Yes.

Summer:            He’s right here. If autism has done something, it is that I don’t filter God out.

Allison:               Well I think that in this book you have brought God nearer to so many and it has the potential to bring so many closer people who live in isolation because of (disabilities in their family).

Summer:            It’s very isolating when you have the high stakes. And some people say … I’ve heard from parents who say, “I’ve literally never … have not left the house in seven years.” And they are not exaggerating. They have not. They get their groceries delivered and they have to care for their kids all the time.

Allison:               Right. And so this, I mean there’s so much richness to touch upon in the book that like we could sit here like for days, but there’s so much in here that has the ability to teach us about our active role in welcoming people and families with disabilities and to lift them out of isolation and loneliness. And it can’t just be (patronizing and sentimental), like “Oh you taught me a lesson,” kind of thing, but that we’re in it together. We’re in life together and we are friends together and pilgrims together as we journey toward Christ. Is there any last thing that you want to add? Anything you want to say?

Summer:            I will say the way that I talk about how attention and learning in this book, I hope everyone will read it and take it seriously. Because this is something that was borne out of a lot of study and a lot of insights and a lot of deep reading and experience.

Allison:               So much research that you do.

Summer:            So much. This book, so I don’t have it mentioned on anything else. So thanks for mentioning that. I want this book to be for families and I also, what I did was a double conversation. So this first part is, I hope in layman’s terms, but then when you get to the back, I have a one, two like an eight page bibliography.

Allison:               That’s treasure, that’s absolutely treasure.

Summer:            And something like 20 pages of dense footnotes, endnotes. And I go into the patristic sources and I will cite some brain science as well. But a lot of patristic stuff and a lot of reasoning back here. So if you want the other conversation, the scholarly stuff, it’s there. Because I was trained as a scholar.

Allison:               Yeah. Summer has her M. Div from Duke Divinity School.

Summer:            And my Masters of Theology in Early Church History. I have two Masters degrees and I have a Bachelor of Arts in Religion.

Allison:               So that’s why this is a book of practical theology. It’s for families and it’s also for practitioners, it’s for theologians, it’s for a wide audience of people.

Summer:            And I wanted people to see that the things that reach us they are really grounded in the tradition and sometimes making those connections is something that. It’s good to know. You don’t want to have wings without roots, you know what I mean? I don’t want to say, “Look, you’re free in Christ.” And you just fall over.

Allison:               Well you ground us in what has been given in the church to do the work of welcoming all in the Kingdom. I think this is something that belongs in Orthodox seminaries, a variety of different seminaries like clergy should be reading this book. Clergy wives should be reading this book. Sunday school teachers, anybody in-

Summer:            People in a jurisdiction (that has) family ministries.

Allison:               It has such a wide range. In your book you say like one in five (people have a disability).

Summer:            20%.

Allison:               20% of people have a visible or invisible disability.

Summer:            And I can pass sometimes, but if you’re around me for more than like 10 minutes and I open my mouth, I don’t pass anymore.

Allison:               I have said like I have celiac disease and that’s an invisible disability. It’s something that has deeply affected my immune system and my participation in my life and (has affected the lives) many, many people.

Summer:            Or arthritis. There are so many things people have.

Allison:               Yes.

Summer:            Some people have asked me, “why do you focus on families?” And I think part of it is that it really is a family thing. Families bear the burden of disability and also the joys. People are always saying, “we want families (with disabilities) to be in the church.” But you have to seek people with disabilities. You have to seek them because it’s so-

Allison:               And treat them as people, not like “check off my outreach (quota),” but like “here’s my friend.”

Summer:            And it’s a little more disarming I think to talk about, and my spiritual father said, “Focus on the kids.” And also the bishops said the same thing in their statement in 2009, “The tradition that we have received doesn’t blame people for disabilities.” And this has been confirmed by the scriptures, but also by the bishops, and that’s what I was responding to by writing this, was their call to explore it. And one of the things that you see with children is it’s harder to blame a child. You can’t say, “This child sinned.” Unless you’re just really having a self-protective moment and disillusioning yourself. You can’t say, “Oh, clearly this child was born this way for X reason.” It’s very obvious they didn’t cause it. It’s very obvious that this was something that you can’t make the excuses to not engage.

                             And I wanted people, of course, we all know that we shouldn’t judge one another anyway, but it’s good to be able to have a connection with the love for children or the love for our elders, who a lot of times are also disabled, maybe from circumstance instead of birth. But to have those connections and build on it, to build on the love of God wherever it is. This book is not going to beat you over the head or shame you at all. I am not grievance-driven and this book is an extension of grace, I hope, and practical advice to help you to see how to overcome challenges. How can we overcome? How can we be kind? How can we be like Him? This God is-

Allison:               Well, you dedicate this book to the children of joy, which is an affection term for your children. And I think that really it is a joyful book to read. So thank you so much for this work and for chatting with me and for your friendship.

Summer:            Thank you so much.

Allison:               So where can people buy this?

Summer:            Well, you could get it on the Ancient Faith Store, which is the easiest, most reliable place. It is also on Amazon.

Allison:               Okay. Great. Thank you so much.

Summer:            Thank you.

Allison:               Okay. Yay. That was so great. That was so fun.