Theology in the Raw - Disability, Downs Syndrome, and the Need for Diverse Community: Dr. Andrew Barron

Episode Date: December 5, 2024

Dr. Andrew Barron is a scholar of theology and disability and the author of the book Human Difference: Reflections on a Life in Proximity to Disability. He has taught at The Centre for Spirituality, Disability, and Care at Martin Luther University College and previously taught disability and theology at Wycliffe College at the University of Toronto.  -- If you've enjoyed this content, please subscribe to my channel! Support Theology in the Raw through Patreon: https://www.patreon.com/theologyintheraw Or you can support me directly through Venmo: @Preston-Sprinkle-1 Visit my personal website: https://www.prestonsprinkle.com For questions about faith, sexuality & gender: https://www.centerforfaith.com Learn more about your ad choices. Visit megaphone.fm/adchoices

The exiles and Babylon conferences happening again, April 3rd to April 5th, 2025 in Minneapolis, Minnesota. I cannot wait for this conference. We're talking about the gospel and race after George Floyd. We're talking about transgender people in the church, social justice and the gospel, two perspectives, and a dialogical debate about whether the evangelical church is good for this country. Featuring my new friend, Adam Davidson. He's an atheist journalist and Sean McDowell, my other good friend, they're going to banter around about that topic. We also have Latasha Morrison, Ephraim Smith, Mark Yarhouse, Malcolm Foley, and many other awesome speakers. We're also adding some breakouts

this year, and we're going to have a killer after party. I can't wait for that one. Actually, if you want to attend a conference, you can do so by going to theology, raw.com. You want to register early. We do have an early birth, a fairly aggressive early bird special. It ends December 31st. So if you are planning on attending the conference, you want to sign up before then you could also attend virtually. If you can't make it out to Minneapolis again, April 3rd to 5th, Minneapolis, Minnesota, exiles of Babylon, go to theology and the route.com. And I hope to see you there. The exiles and Babylon conference is happening again, folks, April 3rd to 5th, 2025 in Minneapolis, Minnesota. This is going to be a fantastic conference. Registration is currently open at theology and rod.com. You can get all the info on sessions and speakers and all the

stuff going on there. Um, and we, we are running an early birth special that expires, expires, runs out the early birth special runs until December 31st. Just make sure you sign up for them to take advantage of that special. Uh, hope to see you there. My guest today is dr. Andrew Baron, who is a scholar of theology and disability and the author of the new book, a human difference, reflections on life in proximity to disability, his son, Rafi has down syndrome. So we talk a lot about how, uh, raising Rafi, uh, has, uh, taught him about Jesus. And this conversation is fantastic.

I would say in particular towards the end of the conversation, man, Andrew just was really challenging me. And I think he'll challenge all of you on reconsidering the importance of being in proximity to people with disabilities. Andrew has taught at the center for spirituality, disability and care at Martin Luther university college and previous previously taught disability and theology at WeakLive college at the university of Toronto. I really, really enjoyed this super important conversation. So please welcome to the show for the first time, the one and only Dr. Andrew Barron. All right. Hey, Andrew. Welcome to Theology

in the Raw from all the way from Canada. Thanks for having me. I, I'm a long time listener and really appreciate what you're doing. So it's a pleasure privilege. Thanks for having me. I haven't had a Canadian on in a while. I don't think, uh, when was the last time I got quite a few Canadian listeners though, Canadian, Canada and UK, um, Australia, I'm going to the English speaking countries. In fact, the podcast typically is much more highly ranked among Christian podcasts in the UK than America, even Canada, actually Canada. I mean, there's some, there's more maybe competition in American based podcast. Maybe that's what it is, but it's, it's a, sometimes it's like really high up in, in

the UK. I used to live in the UK. So maybe, I dunno, that, that might have something to do with it. But why don't we begin? Do you tell, I would love to hear your story and how you got into thinking about faith and disability and the gospel and difference and all those things that you talked about in your book. Well, I'm a Jewish follower of Jesus. I grew up in a Jewish home in New York City. And the neighborhood that I grew up in was totally Jewish. I really didn't know anybody who wasn't Jewish until I was a teenager. I knew that you guys were out there somewhere, but I wasn't exactly sure where you were. As goyim.

Yeah. I mean, I went to public high school. I went to Hebrew school, but the whole neighborhood was Jewish, so everybody was the same. My grandparents, you know, typically, you know, in that generation, they moved to New York City from Eastern Europe to escape persecution. And they were simple people, cobblers and people who worked the land but they came and they worked in the city. My grandmother worked in a sweatshop. First language was Yiddish. You know, and I asked her, I would often wonder, you know, because they were

so different than I was. And I said, why did you have to leave? And she said, because we were different. And it got me thinking even at a young age about human difference. And I put it aside, you know, continued to live my life, had my bar mitzvah, loved being Jewish, loved my literature, the land, the language. I wasn't so much interested in God, but I was more interested in the culture of Judaism and the language. But moving when I was 18 from New York City to Florida, where I studied science and engineering, and nobody was Jewish. And so, human difference sort of just smacked me in the face. And I wasn't experiencing any kind of anti-Semitism. I enjoyed, you know, studying there,

and then heard the gospel, you know, through friends in university, you know, who told me about Jesus. And I said, well, you know, he's good for the Gentiles, but he's not for the Jews. And they gave me a Gideon's Bible. And I said, well, this is not my book, it's your book. And they said, no, read, just open it up and look at the first book, look at the first chapter. And I opened it up to Matthew 1 and said, the genealogy of Jesus, the Messiah, Son of David, son of Abraham. And I looked at them and I said, what are these Jews doing in your book? And I was incredulous, but I also felt illiterate because I knew that the New Testament was a very important book and I felt like I was illiterate because I didn't know what was

in it. And so I read it and I was honestly non-plussed by it, but I felt completely at home in the Jewish worldview that it presented. And I saw Jesus as a Jew among Jews talking about Jewish things. But eventually I started taking the New Testament more seriously and I started reading the Old Testament as well because I never really read it. In Hebrew school, you kind of read redacted versions of Bible stories, and I started to read the Old Testament. Somebody gave me an Old Testament, and I as well was just mortified by it because my name is Andrew, I was named after Abraham, my Hebrew name is Abraham. And I never read that Abraham gave away Sarah twice, probably for sexual

favors. And I gave the Bible back to the person and I told her that you've given me an anti-Semitic Bible, because this can't be true. And she told me something that I never forgot. She said, Andrew, you're Abraham. You're just as broken as he is. And you'll find throughout the text people who are broken, who need God. And it's an honest evaluation of the human condition. And that just astounded me. Eventually, I came to put my hope and my faith in Jesus. I was baptized by a Holocaust survivor who had come to faith in Jesus when I was 22, and eventually found my way into full-time ministry with the Ministry of Jews for Jesus. I was in South Africa working with Jews for

Jesus with my wife. Just loved it there, had a great ministry, planted a church. We just never wanted to leave. We got pregnant. Her pregnancy was normal. Raffy was born. He looked like me. And I went home. And a few hours later, the doctor said, you're going to have to come back. And I said, why? He said, just come back. I said, tell me. He said, well, we think, you know, that your son has Down syndrome and everything sort of went into slow motion. I thought to myself, oh, this is not my life. This is somebody else's life. You know, everything sort of slowed down and we were trying to come to terms with what had been given to us. We went through all of these tests and everybody was wonderful at the hospital.

All of his tests were negative. He was very healthy. And they were very encouraging. They said, he's healthy. I know that you're shocked, but he's going to surprise you and take him home and take care of him. And that was the beginning of our journey in human difference. And I began taking care of him. And then three years after he was born, we had another daughter. And then three years later, we had a third daughter and we moved to Canada and we raised our children. And I began to think theologically about this, because I hadn't really thought about it theologically,

because I was just busy trying to survive and raise these kids. You know, Raffy was six, and then we had a three-year-old and a newborn. And I began writing, I began studying, but also I began teaching. A local Bible college asked me to teach a course in disability and theology, and having students and talking to students and writing lectures, realized that we live in a world of human difference, and that I believe that human difference is baked into creation, and that God wants us to live in this kind of world. And He wants us to live in proximity to human difference for our own flourishing. Now, human difference is a hard thing to pin down. Often, we say that it's some kind of attributes that interpersonally or socially divide us, that separate groups from one people to another kind of people. But often we can see it in

the body. And we can say, oh, you're different. And there's various degrees and forms of human difference. But human difference is a construction and it's based on societal concerns. Once I had to take my son, Rafi, his name to the ER, he had a very bad ear infection. And finally we got to the doctor and the doctor said, besides Down syndrome, what's his problem? And I said, he has an ear infection and Down syndrome is not a problem. And he was embarrassed and he knew that he made a mistake. And I hopefully I changed

the way he thinks about human difference. But I think that proximity to human difference just makes us more human being. I mean, one of my heroes, Jean Vanier, who started the L'Arche movement, moved in with a group of men who were disabled intellectually. And he realized that it was making him more human. I believe that our text tells us that God implicates himself inside of human difference. I mean, we see this very clearly when Moses was complaining about this problem that he had with his mouth. He couldn't speak right and the commentators give all various reasons for what was going on with his mouth, that he had some kind of speech impediment or that he

stuttered. But eventually God says, look, I'm going to help you. But then he also says, who do you think made your mouth? Who created you? I'm understanding all of this. I'm involved in all of this. And I see that in a sense, God implicates Himself inside of this. And it caused me to wonder not so much about Moses, but about God. What kind of God do we worship who is implicated in human disability? Pete Yeah. Can you expand on that? What do you mean implicated in human, that he has a role? Pete He's inside all of it. In Exodus chapter four, God says, who gave human beings their mouth? Who makes them deaf? Who makes them mute? Who gives them sight? Who makes them blind?

Is it not? I so what kind of God is this? That's a tough verse. That's a really, yeah. Tell us about your, how you were wrestling when you first kind of started to think through this passage. Well, I, in Romans chapter 11, for from Him and through Him and for Him are all things. So God's aware of all of it. He's in all of it. I think that to say that Raphae and Andrew and Preston are created in the image of God is a radical thing. But what kind of God creates Raffi in his image? Who is this God that we worship where Raffi is created in his image? And he's profoundly different and profoundly disabled.

Raffi is not oriented to time and place. He needs to be with somebody all the time. I mean just for me to be here with you for this hour, I had to make all kinds of arrangements for him. You know, he's 29 years old, uh, but he behaves like a toddler. He can't be alone, but he's he's funny. He's charismatic. He's smart, he's intelligent, he's infuriating, and he loves, he knows how to love, he knows how to receive love. He's more like me than unlike me, but he's profoundly different. And so I began, you know, to circle back a kind of a theological reflection on human difference. And I started thinking about Genesis 2 and 3, that Adam

had a body. And because he had a body, he had human limitations, that he was subject to his body. And then I realized the text tells us the first time that something wasn't right, something wasn't good. And this is before the fall. Well, what wasn't good? He was alone. And so what's the solution for aloneness? I would say it's human difference, that God brings him somebody that he can be with, the

same but different. And Adam and Eve lived their lives in the body. They walked and they talked and they ate, they played, they had sex, they did things in the body. But they were subject to human limitations. Were they subject to gravity? Were they subject to indigestion? Were they tired?

Were they grumpy? Were they happy? Were they sad? And so we have this notion of Adam and Eve being kind of these superhuman perfect things, but there's something else going on there. And it made me think very strongly about what it means to be embodied, what it means to be a human being, what it means to be alone, and what it means to care. So the first thing that God told them was to care. I began thinking of this whole notion of care.

I mean, you couldn't be an adult unless somebody cared for you as a baby. So what we call normal was that babies are born and they're taken care of. And eventually we need to take care of them less and less and less. And eventually they take care of others. And then eventually they get old and then someone takes care of them. That's what we call normal. Raffi needs to be

cared for for the rest of his life. So I would say that Raffi's vocation is to be cared for and my vocation is to take care of him. And I see that as a theological responsibility. My assignment given to me by God is to take care of Raffi. As I began to look at the text, I saw disability everywhere. Isaac was blind, Jacob had a limp, all the matriarchs were barren in one way or the other. Once you start looking for disability, you just start seeing it everywhere. And once you start looking at the text through a disability lens, through a limits lens, it sort of affects you in a

very profound way. I'm thinking about Mark chapter five, thinking about when Jesus goes across and he meets the demoniac, and the text says that nobody was strong enough to restrain him. Now, if you read that through a disability lens, it means that they tried to take care of him. They tried to cope with him. They tried to do everything they could do to help. His family was probably in the neighborhood, and they mourned for his disability. But when I think of them trying to restrain him,

I think of it in terms of human care. They didn't want him to hurt himself. And then after he was healed, he wants to go with Jesus, but what does Jesus tell him to do? Go back and be with your family, and live your life with the people that already know you. When we look in the New Testament, we meet people who were paralytics.

In Acts chapter three, it says a man who was lame from birth was being carried. And so there are places in Jerusalem where it was traditional to beg if you were paralyzed. Well, I think to myself, how did these people become adults in the ancient Near East if you were paralyzed? How was it even possible? Well, people took care of them. They carried them. Somebody took care of these people. And how did they get from here to there if they couldn't walk? How did they eat? How did they sleep? How did what? So you begin

thinking about what is this person's life like? People who were blind. Any number of disabled people who needed help. How is it possible that they survived? Then I'm thinking about Luke chapter 14, the great banquet at the end of the age. Who did Jesus invite to this banquet? He invites the disabled. So how is it possible that at the end of the age, when Jesus invites people to come and feast with him, you can identify people who are disabled?

How is that possible? And I think the only way that it's possible is because this human difference and this disability is somehow baked into creation and that God takes that in on himself and wants it to be that way. And so in my course and in my teaching, I sort of reflect on all of this. I reflect on Jesus and disability, Paul and disability, the New Testament and disability. I talk about including and belonging. Today it's very sexy to say that the disabled need to be included. Well, I think that that's a very dangerous word because when you're included, you don't

necessarily belong. Like it, like it assumes an outside-ness. We've been the mem- we've been members of a church, a really good church, a really solid church for 28 years. Raffy's included, but he doesn't belong. He's a stranger. Like, if Raffy goes to an event, I have to take him, I have to stay with him or somebody has to go with him. He doesn't belong. Are you, are you saying this critically of the church? I'm not, not that you're criticizing it, but like, would you want him to belong rather

than just be included? Yeah, of course. So Dietrich Bonhoeffer in 1933 went to a place called Bethel, which was a place for disabled people, and it profoundly affected his life. I'm trying to find that quote. Oh, here it is. So he goes to Bethel in 1933, and he realizes that these people are the center of the body of Christ. They're not to be excluded. And in his book on life together, he writes this, the exclusion of the weak and useless people may mean the exclusion of Christ. And Bonhoeffer saw the writing on the wall with regards to the disabled and Nazi Germany, and he knew what was going on, and he warned people about it, that these people were targets because they were considered to

be inferior. And many, many people with Down syndrome, you know, died in the camps. I have pictures of them, you know, and it's heartbreaking. Paul talks about this in Romans, that the body of Christ is composed of the strong and the weak. And so, how do you know that somebody is included? How do you know that somebody belongs? So, I say, if you're in the church and you belong, then you will be missed if you're not there. If you're included, you won't be missed. Hmm. That's a good measurement.

Raffy is not included, so he's not going to be missed. So to say that you're included doesn't necessarily mean that you belong, but if you belong, then you're definitely included. So the question is, how cani belong? And it's a terrible question. Rafi doesn't have any friends in the normal sense of the word. The only people that he spends time with that is not family are people that we pay. So I think it's a terrible failure of society in the neighborhood that we grew up in. You know, we moved here 28 years ago. There were a lot of young families, a lot of young boys and

girls, and we'd be walking through the neighborhood and the boys would be playing stickball and dodge ball and street hockey and basketball. And not once did they invite Raffy to play with them. And not once did a parent say, hey, just bring Raffy over to our house and he can spend the afternoon. We'll watch, we'll take care. Not once. And everyone knows Raffy.

Everyone says, hey, how you doing Raffy? But he doesn't belong. Okay, so I absolutely love to eat. I think about food all the time. It's kind of a problem. Okay. But while I try to eat healthy, most of the time, I definitely don't eat healthy all the time.

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T-I-T-R to get this offer. Okay, so that's drinkag1.com forward slash T-I-T-R to start your new year out on a healthier note. forward slash TITR to start your new year out on a healthier note. What would belonging look like in your church for Raffi? Belonging would look like us not having to be there and him being there and being safe and participating and being with people who love him and who want him to participate. Because Raffi can read, he can read the Bible, he can worship, he can talk, he understands people. And so I think it's a terrible failure of the Church. Now, I certainly don't blame the

Church. I think if I told my pastor this, he'd be mortified. But there's nothing that he can do because the church is not architected for this. But what do we say to Bonhoeffer? You know, how do we respond to what Bonhoeffer says? You know, that if the weak are not welcome, then neither is Christ. He was, you know, these are really, really hard words. And I think part of it is that people don't know what it's like to be in proximity to human difference. And so they're afraid of human difference. I mean, I, you know, Rafi goes to a program where he's with people who are profoundly

different. The degree by which people can be messed up is astounding. I mean, even shocking to me. People who are terribly, terribly disabled. And I don't know how their parents do it. I mean, Rafi has a friend who has to wear a hockey helmet because he hits himself all the time. And he shrieks like a cat. It's

just terrible. Now, how do you welcome that person into church? Yeah. I've spoken in churches though, in my ministry, you know, that tried to model this and they were in neighborhoods where there was a large number of home, you know, group homes. And it was very, very intense and very, very interesting. But I would say 60 or 70% of the people in the church had some kind of physical or mental disability. And it was just the most interesting experience. And they didn't know who I was. They knew that I was coming as a representative of Jews for Jesus, they didn't know I had a son with Down syndrome.

I think the church is implicated in all of this because God implicates himself and God wants us to live in a world in which we have proximity to people who are disabled and different. I think it's a theological necessity. Yeah, no, no, I, I agree, man. And this is, um, if you asked me three years ago, I probably wouldn't have given a second thought about this because I mean, all, any of us to have

a majority experience, we're just not pre-programmed to open our eyes to the diversity of minority experiences. Right? Like it's easy for the majority to care about the majority and see the world through the lens of the majority, whether it's ethnicity, whether it's gender, whether it's ability or whatever, wealth, poverty. It's only majority because you're in proximity to that. Yeah. Yeah. Yeah. I just lost few years. I just had several conversations with disability scholars or people who have been in proximity. And it's just, it's blown my mind really. I mean, it's

like this whole piece of the church that I think is missing and lacking. Do you, I mean, is one key ingredient to belonging? Is it like participation? I mean, you said Raffi can read. So I mean, you said Rafi can read. So I mean, have it, why not read scripture on a Sunday morning as part of the church rhythm? Would that be a step towards belonging or is it more than that? Um, or what other things? But it's, it's, uh, it's inclusion. That's inclusion. It's not belonging. That's an, okay. Why, why is it not, why would that not be belonging? Well, you know, we're

there every Sunday. People see us with Raffy. They say, hi, how are you? Nobody, you know, gives it a second thought. So the energy for Raffy to belong doesn't come from the church. The energy would have to come from us advocating for Raffi. You know, and having a son with Down syndrome means that you spend a lifetime in advocacy. Most of that has to do with services and money and support and government. And it's true that here in Toronto, we are blessed, you know, but the advocacy that it took to get Raffi, youaffi what he needed and to get the social services and the money and the support, it's a lifetime of work. And now we're

looking at end of life issues for my, I'm 65, my wife is 60. So what do we, when we can't take care of Rafi and the government actually tracks us. And when I turned 65, the agency actually reached out to us and they said, oh, we noticed that, you know, you turn 65, you know, tell us what's going on, you know, because it's all an algorithm. So now I turned 65 and Rafi gets pushed up, you know, with regards to support and, and housing and all of that kind of thing. Is your income okay? So the government is much more proactive than the church. That's so sad, man. No, I mean, that's where my mind was going when it's like they're taking

the initiative to reach out to you because they have, if I'm disabled, then I call them. You call the government, not the church. No, I call the government. I don't call the church. The church isn't going to help me. You know, so, you know, I'm a churchman. I've been in churches where it's, it is different. And again, where I, I, I, I, I, neither of us are trying to speak negatively of your current church. You said it's a really good church, really good people that shouldn't be like, can we all agree? Everybody listening that the church should be the first call that are not even the first call you make. They should be the ones checking in with you. Like that's what belonging and family should look like. I have like, for me to be with you, I had to call a helper, somebody I pay, to pick

up Raffy. You know, obviously, if I, and also the other thing you have to remember, Preston, is that we don't have family here. We raised our children with no, my brother, my sister's in New York, all my cousins are in New York, my parents, you know, my mom is in Florida. So we raised our family with no family, but that shouldn't real quick. I just want to say that shouldn't matter because Jesus redefined you do have family there. You have family that is stronger

than any blood connection or again, should be according to the gospels. Right? We don't have those kinds of relationships. You know, even though we've been here almost 28 years, it would be a phone call, it would be an arrangement, it would be time, it would be somebody, you know, it's just easier because I have a group of five or six young people that I pay, you know, that I can just say, hey, are you available? You know, I have an interview and they say, yeah, and I have to pay them. You know, that's the way we've done it for such a long time. And we just don't have, you know, that kind of relationship in the local church. I think maybe if we lived in a rural area, small church,

we had a lot of close friends, people that were in our house all the time. When we lived in South Africa after Rafi was born, we had people in our face constantly. So the quality of friendships and the culture in South Africa compared to here, where we moved here as strangers, I think a lot of people just, they just don't know what to do. They're our friends. I think if we had an emergency, there are some people that we could call. But it's the issue for me, as I think about it theologically, I mean, financially we have life insurance. My daughters are thriving. My daughters have power of attorney over my son. In the worst case scenario, Raffi's taken care of because I told them, I said the last thing that I want and the only thing that I'm afraid of is that a judge will make some

decision about Raffi. He's taken care of in that sense. It's more like the anticipatory anxiety of what might happen. But I unfortunately wouldn't first go to the church. You mentioned South Africa. Yeah. So I wonder if there's some cultural differences here too. Like, would you say churches in South Africa, you probably would have a different experience.

There's a good chance Rafi would belong and not just be included or? It's hard to know. So after Raffi, we never wanted to leave South Africa, but the problem was it was a very interesting problem in that the vast majority of people in South Africa who have Down syndrome are black. And so when we tried to get integrated into the disability community, you know, apartheid had fallen and black people were starting to move into the city and into the middle class neighborhoods and we started having black neighbors, which was very, very exciting, you know, just enormously exciting. But the vast majority of black people, black Christians, they lived in the townships, like

an hour away. And so I was trying to figure out what was going on. And I realized that in the black culture in South Africa, they didn't do prenatal care. And so they had children with Down syndrome at the same rate as white people. But the white people, but the white people almost invariably had abortions. So there was very, very few white people with Down syndrome and the majority were black. So it's because of abortions, not because Down syndrome is like affecting black people

at a higher rate than it is. No. And so, and the black culture, different language, different background. It became this crazy cultural problem, but also because of the social situation and apartheid and the new African National Congress government, all of the money was boomeranging back to the black community for social services. We were finding ourselves in the middle of nowhere trying to get support. But also we had aging parents and it was, you know, South Africa is a long, long way

away. And so we moved, you know, we moved back here, you know, where we could find, you know, some more, you know, so real support with regards to the government and that kind of disability insurance, which was the case. And it's been a real blessing to us. The Canadian government is very disability friendly. So that part of our lives has just been wonderful. And being able to reflect theologically and spend some time with students and write this

book and hopefully write some follow-up books, you know, has been very meaningful to me. Yeah. When you go, let's go back, I want to ask a theological question because you said it's part of, I forget your exact wording, but you can say how you want it. Like, the disability is part of creation. I know there's, as I'm learning about the discussion and different disability theologians and everything, there seems to be a conversation, maybe even a debate about whether disabilities or certain disabilities are part of pre-fall creation, built into creation before the fall

in Genesis 3. And others would say, no, disabilities are a byproduct of Genesis three that God can obviously use and bring beauty out of. How would you summarize that debate or whatever? And can you help us navigate that conversation? Am I even representing it correctly? So, I mean, maybe you can clean up my mess and explain that discussion to me. Well, I mean, I have a mutual friend, Megan Franzen, who wrote the book on intersex. Oh, yeah. And I was interested to read your blog about her. Oh, yeah.

And I think she makes, I think you correctly identified her strengths and weaknesses in her arguments. Okay. And I'm sympathetic to her argument, obviously, but I understand, you know, your argument as well. But I don't see textual evidence with regards to the fall and Raffi being created in the image of God. The fact that our parents, Adam and Eve, were embodied people, I think should cause us to pause about what their bodies were like. And because they're subject to gravity or subject to embodiment, they're subject to everything that we are subject to creature, lead this limitations, creaturely and limitations. If the original

bodies, I mean, think about this, had an immune system that means there was something that needed to fight off. Right. And so if God says something is not good and he says it before the fall, so I think, but I don't see the textual evidence with regards to the fall, but also I see, especially Luke 14, the Great Banquet, why would there be the disabled at the end of the age? Why won't they all be fixed? And I think to myself, how would I recognize Raffi in heaven? Is Raffi's Down syndrome going to be erased in heaven? It's an interesting question. Yeah. But isn't that banquet though? Isn't that, does that, do we know if that's like a post resurrection? It seems to be in the kingdom of God. It's the end of the age. He's inviting, you know, and so there's the sense in which it's, it's, there's something

new. Hmm. Okay. I had a, I had a, before he passed away, I had a friendship with J.I. Packer, you know, probably one of the greatest thinkers, Christian thinkers in the 20th century. He came to my house for an event. He met Raffi and we, I was talking to him about Raffi. He was like this very, very interesting man, brilliant thinker.

I said, Dr. Packer, is Raffi going to have Down syndrome in heaven? This is a guy that knows the answer to everything. I wish I had a video recording of his face as he went into all of these contortions. And here's a man who spent his life answering questions. He said, the best answer I can give you is yes and no, because he'll be the same, but he'll be the same, but he'll be different. And so to further answer your question, how do we recognize Jesus after his death and resurrection? How do we know that it's him?

How did Thomas know that it was him? The holes in his hands, right? His disability, his brokenness. Paul talks about identifying with Christ's weakness, with his disability. So we can say that the incarnation was God purposely disabling himself in some way, embodying himself. But he carries that disability with him and we can recognize him by virtue of his disability. I think there's some very powerful biblical images of God keeping things the same but fixing them. And I think that from a disability enabling point of view, disability is baked in to creation. If we say

that Raphae is created in the image of God, he has an extra chromosome. Is that extra chromosome because of the fall? I mean, we would say that if you're left, you know, I don't know, Megan makes this argument about being left handed, about having blue eyes, about all the differences, people, you know, creatures that don't swim or, or, or fly that they're in between categories in her argument about intersex. And I think it's a very powerful argument. It seems like, I mean, when you say disability, it seems like a really, really broad category too.

Yeah, it's not a good category. It's the best way it's helpful category, but it's not the best category. And so I've used a hermeneutic of human difference, human difference that has limits. So Raffy's limits are different. Raffy's life is different. My life is different. My peers have very different lives than I do. You know, their kids are out of the house, they're traveling, they're going out to restaurants, they're doing this, they're doing that. I've got none of that. Yeah. I mean, my wife and I don't travel together. We don't fly together normally, unless it's with Raffy. Until, you know, our daughters are much more settled in their lives and secure.

And we're hoping that they want to settle in Toronto so that we know that Rafi's future is secure. You know, I'm very conscious of making sure that my girls can have their lives while I take care of Rafi, because they're going to have to be making decisions about their lives in the future and taking care of Rafi. And I said, I don't want Rafi in a group home. I find that offensive. He needs to be with his family. And they, you know, because Raffi was the first born, they grew up thinking that Raffi was normal. And he is normal. Define normal. I think it's like with this disability, it seems like something like,

this isn't my area, so I just, you know, think disability, it seems like something like, and this isn't my area, so I just, you know, think it out loud, but something like blindness or deafness. I mean, couldn't you make an argument that eyes were designed by the creator to see if they are not seeing that that is some, that's not resonating with the original design of this thing. Or like I'm deaf in my left ear. I was born that way. resonating with the original design of this thing, or like I'm deaf in my left ear. I was born that way. It seems logical that this piece of skin on this side of my face on the

left side was designed to catch sound. It isn't catching sound. It's not because of, you can even go in, it's like, yeah, well, you're missing certain things that constitute a ear that makes it here. And it seems logical that in the resurrection that that would be repaired. And we even see Jesus sort of giving glimpses of that when he's healing blindness and deafness and stuff. Or maybe I could have you comment on that. But that doesn't, like not every disability is in that same category. Like even, I don't even know how to think through down the syndrome. Well, you have to take into account God's words to Moses. And that's why I say that God implicates himself, that he's inside of all of this. He's aware of it. And that the, the texts, I think the weight of the text implies that God is completely aware of all

of it. And that his interest is in taking care of the disabled. And so, you have these various laws in Leviticus where the people are saying, you take care of these people. That's going to show your humanity. You know, don't take advantage of people who are disabled. Honor the stranger. You know, who is the stranger? Is the stranger someone who is different than you? And it may be the person who is disabled. And because we don't live in proximity to these people, they're all strangers. Raffy's a stranger. And so human fl- I believe that human flourishing is dependent on proximity to disability. And if we're not in proximity to disability, we can't flourish. And I think that Bonhoeffer's words, you know, I think should be plastered

on every church. I thought it probably several of Bonhoeffer's words should be plastered on every church. Part of it is this kind of theological abstraction, you know, is disability part of the fall? Which kind of disability is it? Is it not? Will be healed in the resurrection or is healing is even the wrong term to use? Does any of this actually, well, let me ask you, does it, for somebody who lives in deep proximity to disability, is it important for you to have a response to that?

Or is it just end up being kind of a theological abstraction that doesn't really change your day to day? I think, you know, my, you know, I retired, you know, from full-time ministry four years ago, you know, to be Raffy's full-time caretaker because my wife wanted to work full-time. So I've been, you know, a full-time academic. I did doctoral work at University of Toronto, finished 10 years ago. And so sort of been on a ministry of kind of part-time adjunct faculty to teach disability and theology, disability and human care,

this concept of normalism and ableism. I've been doing a lot of research on an area that you might find really interesting on disability and sexuality. Oh, interesting. There's a whole new wild west world of psychologists and therapists that are dealing with a disabled. That's very, very interesting and very, very provocative. So I'm getting some interest in local Christian universities, colleges, seminaries that are

dealing with counseling, with psychology. But because, you know, post-secondary education is a whole new world and is not the traditional four-year student, enrollment is down. And because adjunct faculty is at the bottom of the feeding, you know, poll, I don't get a lot of opportunities and when enrollment is low I get laid off. So I'm looking to develop more, you know, curriculum in line with disability and theology. I'm teaching seminars and just as a small commercial if people wanted to reach out to me at Dr. AndrewBaron.com I do seminars on disability and theology, on ableism, normalism, all of

these areas that I'm really interested in. And so, it doesn't really make a difference to me, you know, and I don't expect the church to reform in this area. I'm very blessed that I've got the life that I have. The peers that I have who have children with Down syndrome are often last children of older parents. And so, where their siblings are out of the house, these are parents that are getting ready for retirement and all of a sudden they've got a baby with Down syndrome. For us, we were young parents, first child, so we had energy enthusiasm for Rafii. And so our experience was completely different.

But now we're entering into a different phase of life. But financially, there's a security that we have in the benefits that Rafi receives. He's in a great program. He's healthy. He's healthy, he's satisfied, his medical care is excellent. And so I'm happy to ride that wave. I don't know if I can help the church, I can help students who are in Christian universities and seminaries, and hopefully this new wave of disability thinking. Disability and theology is a new kind of a new field that's only started 30 or 40 years ago. If you're familiar with John Swinton, I went to Aberdeen and studied along. Not, I just knew of him and didn't even have a category for disability theology. And I heard, Oh yeah, he does that disability. I'm like, what do you know what

that is? And then now look it back. I'm like, gosh, I wish I got to know him when I was there. Well, he's like the Pope of disability theology. He endorsed my book. I was just very fortunate. I understand that he's retiring shortly. So, he's profoundly affected the way I think about disability and theology, and just reoriented the whole way that I interpret the Bible and this hermeneutic that I developed of human difference, you know, and so, which he endorsed, which I was just very thankful for. But I think that, you know, the ministry that I have now, you know, as long as I've got my brain cells will be, you know, to teach disability and theology.

And so I'm teaching that at Tyndale University in Toronto, Ambrose University in Calgary. And I'm trying to market myself wherever I can to try to teach this and to try to get the next generation of Christian thinkers and workers and pastors to be much more sensitive to the issue of normalism and ableism, inclusion and belonging. Yeah. I guess I just, I can't, I keep coming back to the church piece, Andrew. I'm just not okay with us saying that it's crucial for human flourishing to be in proximity to disability for all of us. And then to say, but the church, yeah, just, it doesn't really do it.

Well, what does Paul say about the body of Christ? What is the, what is the, the architecture of the body of Christ is a combination of the strong and the weak. Yeah. So if it's that crucial, then I, it just, but I do know, I can think of two churches that are doing it fairly well. Well, one doesn't exist anymore. For various reasons, it doesn't exist. But a buddy of mine is a pastor. He's adopted two kids with Down syndrome, actually. His wife, as a teenager, young teenage, maybe even earlier than that, felt incredibly called to adopt kids with Down syndrome as a young team, like almost like a vision. Yeah. And when they got married, she brought that in and she says, this is

a non-negotiable for me. So they have two kids with Down syndrome. And he was a pastor. And so when you have a pastor with kids with Down syndrome, I mean, that just shapes the congregation. This is not now some fringe or unspoken issue. It's part of the life of the church. And so, he attracted several families with kids with disabilities and everything because it broke my heart and also excited me to hear them say, like, we go from parents with kids with disabilities, we go from church to church to church and we just feel like we're either a nuisance, invisible, or an outsider. And this is a, you know, with tears saying this is the first church where I feel like my kid

or kids are not a nuisance. They are just part of the family here because, you know, that's just a culture that's been established. It's the commodification of the church, the commodification of time, the commodification of our programming and our need to produce, our need to grow, the commodification of resources. It's all about time. You know, Rafi's relationship with time, that's a whole chapter in my book trying to understand time. I mean, uh, I don't know if you've read Augustine on time, you know, Augustine spends a lot of time writing about time and he says, I know it's there, but I don't know what it

is. And Raffy as well. He has this very strange relationship with time. Like, what do you mean? Like, can you give us an example? He, everything is now he doesn't like my father passed away. My father-in-law passed away and he says like, when are we going to see grandpa? He died. Oh, okay. When are we going to see him? Um, you know, if something is in an hour, we'll see, we'll say, we're going to leave in an hour.

Okay. He doesn't know what that means. You know, if you say next week, next month, next year, this doesn't mean anything to Rafi. You know, the church is dependent on this. If you have, you know, three services in the morning and the first service has people with Down Syndrome in it and you have to leave at 10 o'clock, it's not going to happen. We are addicted to time and we spend our lives talking about, is this a good time? Is it a bad time? We measure time. The way we measure time, our ancestors

would be mortified by it. We save it, we keep it, we make it, we need it, we lose it. You know, how many different ways do we talk about time? That's weird. I've never thought about that. When you're in Christ, that's the only time that exists is being in Christ. So for people who are disabled, you know, they can't produce anything. The church needs people who produce things, who make a living, who can give money. Raffi can't do any of that. He's not a commodity. The church needs commodified people to raise money, to do things, to sit on boards, to make decisions, to build things.

Raffy can't do any of that. So this is just a deep, deep ecclesiological problem. Cause I mean, you're saying it so almost flippantly, but I mean, obviously you're not endorsing this structure of the church, but it is, it's just, it is so built into the system. Our world, you know, is so, I was on one of the first airplanes that had wifi and you know, we got up, we got in the airplane, the pilot said, Hey, we're really excited. Like, this is like one of the first flights and everybody was like, Oh wow. And so we got

up in the air and we cruised and he turns it on and all of a sudden everybody was like, oh, wow. And so we got up in the air and we cruised and he turns it on and all of a sudden everybody is like, wow. And like 10 minutes later, it broke. And everybody is like complaining and like, and they're going to get a refund and like something that didn't exist. And, you know, I take the train to go into the city. And, you know, 20 years ago, when you took the train, the train was packed and people were talking. And now everybody's face is in their device.

So they, you know, and we're doing emails and we're talking to people, we're making appointments, we're trying to schedule this and that with this phone. And when I'm with Raffy, I'm just talking to him. You know, I'm relating to him. He doesn't understand any of that. And so, the phone has created another barrier between the disabled and the world, keeping them from belonging. between the disabled and the world, keeping them from belonging. And so the whole relationship that the church has time excludes Raffy. It's an, it's undignified. I wonder if in other cultures that are not so clock time, they're more event time oriented. You know, when, when does the birthday party start? Well, it starts when people show up.

When does it end? When they leave. I've been to several countries where they're not as time oriented. I wonder if cultures like that would be, in a sense, almost more naturally conducive for people with Down syndrome. Is this normal? Is this pretty typical of everybody with Down syndrome

or is it more unique to Rafi, the just no concept of time? Oh no, some people with Down syndrome. Is this normal? Is this pretty typical of everybody with Down syndrome or is it more unique to Raffy, the just no concept of time? Oh no, some people with Down syndrome have more of an orientation to time and place. So that's why it's called a syndrome. It's kind of on a scale. But Raffy is fairly high functioning but his orientation to time and place is not good. He also can't toilet himself and so he needs someone to help him go to the bathroom, to shower and to shave. But his orientation to time and place is not good. He also can't toilet himself. And so he needs someone to help him go to the bathroom, to shower, and to shave. But I can tell you, I know it's almost three o'clock. One of the great things that's happened is me hiring young people to take care of Rafi. And I'm around the block from Tyndale University, which has a psychology department, an early

Christian education department. And so I recruit there because I'm on the faculty. So a lot of young girls respond. And I'll never forget this one girl, I told her about Rafi, she wanted to help. And I said, well, you need to, you know, be in the washroom with him and take care of him there. She goes, I said, have you ever done that? She said, no. I said, well, do you wanna learn? She said, yeah, I'll try. So she comes over for dinner and after dinner,

Raffy goes to the toilet and then he says, I'm ready. So I said, okay come with me you know, so I Clean him, you know, I clean him up and you know, her eyes are just really big and then raffy takes his clothes off because he's His naked, you know, he's he's a lot like I always wondered what Adams relationship to nakedness was Which is a lot like Raffy's, is that his nakedness means nothing.

So he's just completely butt naked in front of this girl who's never seen a naked man before. And he's an adult. And so we walk upstairs, we're in the shower, I'm giving him a shower, I have to wash all of his bits and pieces. I shave him, blow his nose, clean his ears, floss his teeth. Her eyes are just like bugging out of their head. And I said, can you do this? She said, I'm going to try. She said, I'm going to try.

You know? And so the next day, you know, sink or swim. And I heard her in the shower with Raffy, you know, washing him, you know, and Raffy was giggling and she was giggling, you know, and, and, and then, you know, she worked for me for like two years and then she had, she has three boys of her own now. And she told me once years later, she goes, that changed my life. You know, just wiping Raffy's butt, changed my life.

And so if you're a teenager, you know, you're a young person and you have to wipe the butt of a man with Down syndrome, it's going to make you, it's going to help in your flourishing. And so, that's the point that I'm trying to make is that proximity to human difference makes us more human, it helps us to flourish. And so her flourishing can be directly tied to her having to toilet Rafi. Because we say that, you know, you shouldn't have to toilet a 29-year-old man. Well, who made that rule?

Ha ha ha ha. Man. And, you know, so we, you know, we're confronted with having to take care of elderly parents. And we say that, you know, so we, you know, we're confronted with having to take care of elderly parents. And we say that, you know, it's undignified. Why is it undignified? That's what we're supposed to do. If we change the diapers of an infant, why can't we change the diapers of an elderly parent? What's the difference? There shouldn't be. And if you're not in proximity to that, then I say that you're missing a vital element of human flourishing. Andrew, that's a great word to end on. I know we're

out of time, but man, that's a, you've given us so much to think about. And yeah, again, just if you're in, especially if you're in some kind of church leadership or, or adjacent to church leadership, I just, I, um, I just think this is so crucial for the church to be more of a source of belonging, not just inclusion. I mean, inclusion is even a good first step. Some churches aren't even there, but to move from inclusion to belonging, I think is, is vital for our flourishing. You know, most churches are focused on inclusion, but I think that that's a terrible sin, you know, and I'm not afraid of calling it that, but I think that, you know, but, and they would say it's the best that we can do. And I'm very sympathetic to that.

So it's a terrible, said is the best we could do. I, yeah, I'm going to join you in maybe pushing churches to go. I, I, I'm very sympathetic. I'm a churchman myself, so I'm sympathetic to it. And I get it. But church ministry is incredibly hard. There's so many needs, so many concerns, so many things that the pastors are just trying to sometimes survive. So I get it. I, you know, but I think this is when you ignore the week, you ignore the heart of Christ's mission. Amen. And I think that, you know, it's, it's a, it's an enormous ecclesial problem, as you said. And I think one that, you know, is coming back to the heart of the church through people like Swinton and hopefully, you know, my ministry

as well, you know, as long as I have breath, this is what I'm, I'm, I'm looking to do, you know, and I see it as, as God's ministry for me as well as taking care of Rafi. Thanks for being a guest. I'm The Al Jirah, Andrew. And again, your book is Human Difference Reflections on Life in Proximity to Disability. You guys can grab it wherever books are sold. It's a fairly short book. I know I've had, you know, only 120, 130 pages, 140 pages. Yeah, some books are, you know, two, 300 pages in this topic. So I'm glad this one's maybe more accessible. So yeah, thanks for being a guest on The Algera. I really appreciate you. I appreciate it. Thanks for the opportunity This show is part of the Converge Podcast Network. Hey friends, Rachel Grohl here from the Hearing Jesus Podcast. Do you ever wonder if you're truly hearing from God?

Are you tired of trying to figure it all out on your own? The Hearing Jesus podcast is here to help you live out your faith every single day. And together we will break down these walls by digging deeply into God's Word in a way that you can really understand it. If this sounds like the kind of journey you want to go on, please join us on the Hearing Jesus podcast on Apple, Spotify, or wherever you listen to podcasts. Hey, so I'm launching a new season on the podcast, The Doctor and the Nurse. World renowned brain coach, Dr. Daniel Amon, joins me as a co-host as we dive deep into the mind and the brain of everything high performance.

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