John Anthony Dunne: Well, then, welcome to the 2 Cities, Podcast.
Vinh Nguyen: Thanks, John. Thanks for having me on, and and inviting me to speak a little bit about this topic, and I look forward to our discussion.
John Anthony Dunne: looking forward to the discussion as well. So we we want to chat about about parenting in particular, and and talk about your daughter Ally, who has down syndrome. But as as we begin this conversation, can you tell us a little bit about yourself and and about your family.
Vinh Nguyen: Yeah, sure.
Vinh Nguyen: we my family and I.
Vinh Nguyen: Well, let me start, I guess, by just saying as an individual, I come from a family of immigrants
who have their own particular world view.
I
Vinh Nguyen: grew up living pretty much in 2 different worlds, Buddhist at home and
Vinh Nguyen: Christianity at church.
Vinh Nguyen: So a lot of that has shaped how I have viewed
Vinh Nguyen: life, and and even
Vinh Nguyen: reading texts like the Bible, and questioning things as I've grown up. And so that'll all actually
Vinh Nguyen: relate somewhat to disability and the struggles I've had in my own personal family, immediate and and extended.
Vinh Nguyen: But
Vinh Nguyen: yeah, I
Vinh Nguyen: maybe just to start off with some humor. I
Vinh Nguyen: grew up around a bunch of Asian people, and actually I'm Vietnamese. My families are all Vietnamese immigrants, and you know they all try to get me to marry an Asian woman. And so.
Vinh Nguyen: having been in that environment no offence to any other Asian women, or I
Vinh Nguyen: appreciate and love all Asian people, obviously, but
Vinh Nguyen: I ran the complete opposite way. My wife is
Vinh Nguyen: blond here, blue eye from the south, you know she she's not Asian at all, and so
Vinh Nguyen: because
Vinh Nguyen: my grandmother was quite a scary person. So I you know I just was one of those things where I was like, yeah, I I just want a little bit more piece of my so married to Southern girl, and they are they all
Vinh Nguyen: pretty nice and pretty kind. And so Michelle's been great, anyway.
Vinh Nguyen: Yeah, we
Vinh Nguyen: I've been married for 12 years now to my wife, and in 2,014
Vinh Nguyen: we gave birth after years and years and years of trying
to have kids. In fact, we
Vinh Nguyen: we're just on the borderline of scheduling appointments to get tested. We were actually sure we could have kids.
Vinh Nguyen: We now have 3 daughters, but
Vinh Nguyen: our first daughter was born.
Vinh Nguyen: and we were ecstatic, and then, all of a sudden.
Vinh Nguyen: you know, things took quite the turn for us from
just
Vinh Nguyen: being a related to being extremely down to the point of neither one of us able. We're able to function with some of the news that we got. So yeah, I can share a little bit more about that. And my daughter Alli and and the events surrounding her birth.
Vinh Nguyen: you know, as as you would like to know. So
John Anthony Dunne: Oh, yeah, you feel free for free. In fact, i'll just edit that out from from just just keep running with it, if you like. Yeah.
Vinh Nguyen: Yeah. So you know, or in 2,014 we found out that we were pregnant, and with our first daughter.
and
Vinh Nguyen: in Louisiana this is was new to us. This is strange. There were a lot of issues.
Vinh Nguyen: things weren't right, and the doctors kind of detected Something was wrong internally, and so they had suggested suggested that we take
Vinh Nguyen: a a test to see if the heart condition, so
Vinh Nguyen: there was no left side of valley's heart when we went in to do all the the sonograms and and and the tests and whatnot, and they said, Your daughter, we're a little concerned. She doesn't have the left side of her heart.
Vinh Nguyen: And so the prognosis quickly came. She has this rare condition called hypoplastic left heart syndrome.
which means essentially, they told us
Vinh Nguyen: what will happen is, you know your daughter. You will give birth to your daughter, and then the rights after she's born.
Vinh Nguyen: the right side of her heart will over work, and she'll have a heart attack, and she'll die.
Vinh Nguyen: And so
Vinh Nguyen: you know. What what do you do with news like that?
Vinh Nguyen: And so they suggested. We take a test
Vinh Nguyen: because heart conditions are often related to people with down syndrome. And so we take the test.
Vinh Nguyen: And this is actually
Vinh Nguyen: really startling, because it's not like this all over the country, but in Louisiana it is a legal law.
Vinh Nguyen: Our doctor came back to us and said, your daughter has tested positive for
Vinh Nguyen: down syndrome.
Vinh Nguyen: and I remember her asking us, she said. You know now that we've taken this test. I know who you are.
Vinh Nguyen: I can just tell, and I hate to ask you this. But I need to ask you legally, since you took this test, would you like to abort your daughter.
Vinh Nguyen: And so in Louisiana there was. It's
Vinh Nguyen: a matter of legal issue for doctors and practitioners. If you were to take this test to ask you if you want to board. So it says something about how people view life and the quality of life, and
Vinh Nguyen: what it means to be a person, or to belong in society right off the bat. Of course we were startled. We didn't know this was even a a thing, you know, to be asked.
Vinh Nguyen: So that said something right off the bat.
Vinh Nguyen: We said. Of course you know. Obviously, of course not in our world view. We don't do that. So
Vinh Nguyen: we continue to have our baby, and
her heart continued to have issues. There was
a a massive procedure at this time. I was in seminary.
Vinh Nguyen: and I remember just being paralyzed. My wife and I were paralyzed. I couldn't go to work. I had a seminary job. Couldn't go to work. I could barely function in classes, and I remember all the professors just
Vinh Nguyen: really shifting into pastoral mode for me.
Vinh Nguyen: We would go on walks, and they would stop and pray for us as we walked along the paths of New Orleans Seminary at night, and
they would really just.
Vinh Nguyen: They were kind of like the bomb our soul, you know, during that time, and
Vinh Nguyen: I remember one particular professor showed up. He. He got the news, and I worked for him as his teaching assistant, and
Vinh Nguyen: his name is Craig Price, and and Craig called me and said, hey, can I come over? And I said, oh, sure!
Vinh Nguyen: And you you know this strange. You know how how you kind of just don't know how you're gonna respond to the news of death and and a kid that you've been longing for. Kind of imagine like man. Is this what Abraham felt like, you know, is this: You know what happens when you
Vinh Nguyen: want something so badly and something you've always longed for, and now it's going to be taken away from you.
Vinh Nguyen: And Craig came over, and i'll never forget it. I was waiting on all of his years of wisdom and pastoral experience and seminary teaching
Vinh Nguyen: to say something like, say, something, make it a make, make the hurt and the stuff go away, you know, he said nothing. For nearly an hour and a half he just sat there and he wept.
Vinh Nguyen: And anyway, on the back side, later on.
Vinh Nguyen: when I went back to to speak with them. I said, hey, Craig, you know back at that time, when you're sitting in our apartment and and and
Vinh Nguyen: just helping us. Why, didn't you say anything like what it now? That ally is okay? I'm. Just curious. Why, you say something, make it better. And I remember him saying something very profound.
Vinh Nguyen: and he he looked at me, and he said, with tears in his tears in his eyes, and he said, Well, what could I have said.
Vinh Nguyen: What could I have said to make it better? I don't understand.
Vinh Nguyen: There's you know there's nothing that I could have said. I just wanted to let you know that I was here, and I wanted to to be there for you guys.
Vinh Nguyen: And through a human agent
Vinh Nguyen: in
Vinh Nguyen: a very profound way. It was almost like
Vinh Nguyen: a lived experience of the presence of God. Not that Craig would identify as that, or anything but like that, but human presence
Vinh Nguyen: in that in times of hurt and pain and in need
Vinh Nguyen: can function, I think, in that way where you can sense God's presence through His people.
Vinh Nguyen: and that was really profound for us, you know, to get through that time.
Vinh Nguyen: and all her story is quite long. Ally story is quite long. Of all the things she went through. She
Vinh Nguyen: ended up. The left side of her heart formed. It was slightly smaller than the right. But you know even the attending doctor, said I. She looked at us as she said.
Vinh Nguyen: Are you and your wife praying people? I'm not religious. But are you praying people? And we said, Yes, you have no idea. We have.
Vinh Nguyen: like
Vinh Nguyen: 12 states, and like 7 countries praying for her right now, people from all over the world. It's crazy, she said. Well, i'm not religious, and I don't know prayer works. But whatever you're doing.
Vinh Nguyen: keep doing it, because in 20 years of medicine I've never seen anything like this. Wow!
Vinh Nguyen: And she's a heart, doctor.
Vinh Nguyen: And so there was this miracle that happened this almost modern day. Miracle that the doctors couldn't explain.
Vinh Nguyen: So Allie was born. And then, after She's once had a whole slew of other issues, and fought for her life for
Vinh Nguyen: a couple, you know, about a month there, and
Vinh Nguyen: she had a different issue where she lost a lot of her blood into her mom. She only had 40% of the blood in her body when she was born, so she was
Vinh Nguyen: pale white, they as soon as we saw her she was up they rushed her out of the room, and
Vinh Nguyen: we're doing transfusions and all sorts of stuff. But now she's alive. She's healthy, and you know you look back, and you couldn't even tell anything was wrong with her. So yeah, it's it's quite a long story. It was quite a long journey, but we have learned an immense
Vinh Nguyen: amount of things about our faith.
Vinh Nguyen: about life.
about
Vinh Nguyen: just how the world perceives people with disabilities
Vinh Nguyen: just more, you know, at least broadly, especially with the abortion question. And
Vinh Nguyen: yeah, so it's it's it's been quite a journey. I. It's been a lot of learning and a lot of growing, and we're still doing all that you know, with Allie still teaching us more about life today than we'll probably ever be able to teach her. But
Vinh Nguyen: there are also a lot of myths which I can get into, too, about
Vinh Nguyen: down syndrome, and
Vinh Nguyen: and her personality and her niceness. So we're not so nice, you know, and all the events that go along with that so? Well, Well, then, thank you so much that was so wonderful and so powerful and just. I appreciate you sharing all of that
John Anthony Dunne: with us, and definitely want to get into those those issues that you just raised there would love to hear a bit about the the lessons that you've learned along the way from your daughter Ally. Some things that she has taught you and and your wife.
Vinh Nguyen: Yeah, probably the on a positive side. The most
Vinh Nguyen: interesting thing that Ali
Vinh Nguyen: has taught me is that
Vinh Nguyen: she really
Vinh Nguyen: doesn't seem to have
Vinh Nguyen: the prejudices
Vinh Nguyen: that we have as people now.
Vinh Nguyen: whether she does or not. Internally, they're not
Vinh Nguyen: overtly expressed right. They're not obvious.
Vinh Nguyen: and i'll give you an example. So ally at my father in Law's church.
Vinh Nguyen: He has a smaller church in in in the town. We grew up in
Vinh Nguyen: mostly with our early people. But you know you have people that come in with polos and and and people that come in
Vinh Nguyen: like myself, dressed in Cardigans, and when I visit, and you have a a person in the back who has long hair, long hair, tattoos all over the place, and it was part of a biker gang.
but Allie.
Vinh Nguyen: and and to my own shame and and self admission, Ally doesn't see people with prejudice. She will. She was the hands shaker. She was the greeter at at every church we've served at the church we served at New Orleans. My father in lost church.
Vinh Nguyen: It didn't matter whether you were a suit and tied to church, or if you came in with a leather jacket and tattoos with long hair and a ponytail right, she's gonna greet you, and shake your hand
Vinh Nguyen: without that prejudice where even myself, who you know I've been in. I've been pastoring in different capacities for 10 years. You know there's some people i'm gonna be careful. You can. You can publish this if you want. But you know there's some people you shake hands with, and other people you shake hands with, and move along a little quicker, and don't have that extended conversation with, you know, because
Vinh Nguyen: you know, you're just like I I don't know about this person, so I have a prejudice that i'm like. I don't know how to feel about this person, are you? You know you just look different than everyone else right now, and I don't know if I can have a long conversation with you. Maybe we set up a meeting where Allie will sit there doesn't matter, she she's gonna have an extended conversation with you as long as you want to talk to her.
Vinh Nguyen: And I thought to myself.
Vinh Nguyen: man, how much better of a pastor would I be if I didn't have those prejudices, those preconceived notions about people.
Vinh Nguyen: And you know I I could see people; for as people first.
Vinh Nguyen: which is also why you know I I I should mention that I deeply appreciated when you introduced
Vinh Nguyen: allies. You know you said I have a a daughter who has down syndrome as opposed to my down syndrome, daughter. That kind of syntax is actually really significant in the community, because one
Vinh Nguyen: puts the condition before the person, and the other puts the person before the condition, so she's not a down syndrome person. She's a person who has down syndrome and personhood is important, and it's very critical in disability. Studies to look
Vinh Nguyen: at people with disabilities
Vinh Nguyen: as as people first, you know, and so Ally does that naturally. She. She sees people as people and nothing else. So that's probably one of the greatest things that she has taught me. She has also taught me that
Vinh Nguyen: it doesn't matter who you are or how you're born.
Vinh Nguyen: Every person has a wide range of emotions and feelings. And I think sometimes as able-bodied people.
Vinh Nguyen: We kinda
Vinh Nguyen: attach
Vinh Nguyen: different feelings or or expressions
Vinh Nguyen: to a condition.
Vinh Nguyen: you know they don't know how to express themselves. So they lash out, for example.
Hmm.
Vinh Nguyen: But how different is that than any other person who is frustrated
Vinh Nguyen: lashing out in different ways, or they don't have self control. They can't communicate in many cases I wouldn't say for all. But
Vinh Nguyen: if we listen to little close a little bit more, and and in
Vinh Nguyen: tuned in
Vinh Nguyen: we'd find out that they communicate.
Vinh Nguyen: Just fine. We're just not listening to how they're communicating. We're already attributing it to a condition as opposed to just
Vinh Nguyen: this is how they respond like any other person would respond. And so yeah, i'm big into learning more about what it means to be a person, you know. Now, with Alley teaches me a lot about that.
So, yeah.
John Anthony Dunne: that's beautiful. I I love that love that example of the non prejudiced outlook on things and your reflections on that as Well.
John Anthony Dunne: I I i'm curious, since you mentioned that there's a a lot of myths that you also would like to dispel. I'm. I'm curious if you could tell us a bit about some of those
Vinh Nguyen: well, particularly as it relates to down syndrome. That's that's where i'm. I'm. Most closely tied to right is
Vinh Nguyen: the the most common one is that they have the the extra chromosome right, so that that extra chromosome is sometimes referred to as the happy chromosome. So down syndrome. People always seem to be very cheery and very happy, and every time I see that I just want to tell the person I will loan my daughter to you for a day, if you would like, you know, to to help you reorient your thinking on that.
Vinh Nguyen: because, you know.
Vinh Nguyen: I I think
Vinh Nguyen: there are already some frameworks.
Vinh Nguyen: Just that idea that people with down syndrome have a happier disposition
Vinh Nguyen: already
Vinh Nguyen: in some way prejudices you to see them that way.
Vinh Nguyen: When you encounter a person with down syndrome.
Vinh Nguyen: And so you come up to them, and you are actually naturally more happy, and how you interact with them. And so they're naturally responding in a more happy manner. Right? You! You're not interact, You're already interacting with them in a way that you have thought about in your head about who they are. They could be having a bad day, and you know you would just go. Oh.
Vinh Nguyen: no, not today. All you just move on you. Don't think twice about it. But in reality
Vinh Nguyen: Allie has such a large range of emotions. In fact, right now she's like a
Vinh Nguyen: well. She's 8, but cognitively. She's like 3 or 4, so we we kind of have her in that 3 major stage
where she was very feisty, like she just
Vinh Nguyen: knows everything very independent, you know.
Vinh Nguyen: bossy and and what not. So the nice the myth of of all down syndrome kids being nice should be, is is probably the easiest one to spell. They are a bunch of others, you know, like they don't live very long, and so abortion becomes a a a factor because their quality of life is low. But
Vinh Nguyen: you know we aren't where we were 20 years ago, 20 years ago.
Vinh Nguyen: Such an idea, I think, might be understandable.
Vinh Nguyen: I had a and back then I didn't know anything about it. I mean I was just a a kid.
Vinh Nguyen: but my friend's aunt and one of my best friends grown up. His aunt had down syndrome.
Vinh Nguyen: but back then
Vinh Nguyen: there weren't all the programs and all the
Vinh Nguyen: the help.
Vinh Nguyen: an avenues of helping people with down syndrome progresses. There are today. So, my friends aunt, you know she would get on a bus, go to work short screws for 10 cents
Vinh Nguyen: a screw, some some low pay, and then come home, and then she would go in her room and just be locked in her room, and she would listen to music until dinner time. Get out, eat dinner, go back to her room, sit in her room, and and and listen to music
There wasn't an inclusive element into everyday life.
Vinh Nguyen: There wasn't
Vinh Nguyen: It was more of an us them kind of framework, because
Vinh Nguyen: people didn't know how to interact, and people didn't know how to deal with it 20 years ago, whereas so well, you know, I think
Vinh Nguyen: that is kind of bled over
Vinh Nguyen: in some ways to modern to even present day, where you know we can do certain things. They can't do certain things. So this idea of conclusion.
Vinh Nguyen: and what that looks like is a question. It was very exclusive. I think I could be wrong, you know, but it it seemed at least in my experience 2 decades ago. Exclusion was more predominant because people are still learning. But
Vinh Nguyen: today inclusion. There are a lot of people working towards inclusion and helping
Vinh Nguyen: people with all sorts of disabilities, even down syndrome.
Vinh Nguyen: you know, interact and and and speech therapy and ally goes to 4 therapies a week, and
Vinh Nguyen: you know we we interact just fine. There is a language barrier, no doubt I had a conversation with Amos young 1 point on this.
Vinh Nguyen: and you know, if you live with the person you actually understand the language. But if you don't live with the person. There's obviously some barrier, and so
Vinh Nguyen: there is something to be said
Vinh Nguyen: in the inclusion. Conversation about that. If you want to understand
Vinh Nguyen: the a person who has a disability. It requires some effort.
Vinh Nguyen: you know it can't just be
a sort of
Vinh Nguyen: we give you an avenue to come. Be a part of us
Vinh Nguyen: without us actually taking some time to get into your we invite you into our world. That's that's the way this tends to work right with inclusion. We invite you into our space in our world, but we don't take the time to understand
Vinh Nguyen: your world, and and what and how you see it. And so there's a lot of listening and effort that has to go into that.
Vinh Nguyen: But I think, yeah, one of the misses. They don't let you know they don't live very long. But you know people down syndrome are living quite long now. The only countries where they're not living long are the ones that are eradicating, you know, down syndrome. And that's happening there's you know.
So
Vinh Nguyen: yeah, I think
Vinh Nguyen: another one is, you know, they people with down syndrome can't do things other people do. Okay? Well.
Vinh Nguyen: i'm 5, 7. I can't dunk a basketball right? So you know, is that disabling to me because I can't play in the Nba like that. We all have limitations of some sort, so we need to reframe what we mean when we talk about limitations.
Vinh Nguyen: We're all finite beings, and we all have different limitations. And so, yeah, of course, people with different disabilities have limitations. But again.
Vinh Nguyen: so it's not our job to put those limitations on them. It's our job to help them get to the potential that they can get to right, so at least to help them along. And and and that's what it means to be inclusive. I run a I know we're trying to talk about myths and stuff, but
Vinh Nguyen: disability ministry in the church is a a big thing that i'm passionate about, and so I run a a
Vinh Nguyen: pretty
Vinh Nguyen: I don't know it's it's decently. It it's growing pretty rapidly. A a sports program here on Grand Island.
Vinh Nguyen: and I I don't separate
Vinh Nguyen: kids who have disabilities. Let's neural typical from you know.
Vinh Nguyen: from atypical, you know.
Vinh Nguyen: or neural divergent kids.
Vinh Nguyen: I put them all together, and I make them function together and and work together, and that's part of it right it. There's a saying in at least the down center of the city. I'm. Sure
Vinh Nguyen: amongst all disability communities probably has a similar sentiment where
Vinh Nguyen: we spend a lot of time
Vinh Nguyen: teaching our kids how to interact with
Vinh Nguyen: society. But we don't really spend that much time teaching society how to interact with our kids.
Vinh Nguyen: And one way you do that is to quit separating people, right our space, your space
Vinh Nguyen: and and and no, no.
Vinh Nguyen: I say this not as something that is bad against the Church. I'm currently serving in. But that's what let us
Vinh Nguyen: to that church is that they had a disability ministry, but a lot of churches with disability ministries
Vinh Nguyen: What that means is, we have a space for your child.
Vinh Nguyen: And so there's a room that has different sensory things, or maybe different dim lightings or soft furniture.
Vinh Nguyen: But it's still.
Vinh Nguyen: and it's not anyone's fault, because everyone's trying to learn how to do this.
Vinh Nguyen: But one of the things that i'm trying to help churches understand is that it that causes a division, it shouldn't be a their space our space
Vinh Nguyen: right? Because oh, well, they can't be in worship with us because they might disrupt the worship service.
Vinh Nguyen: Oh, okay, I mean for me. I I just think about that, and I go. Well, maybe your service needs to be disrupted. If that's where your heart is at right, maybe there is a disruption that needs to happen, or they can't be out here because they may. You have a meltdown, and we don't have help, and so I think churches are trying. But
Vinh Nguyen: to separate and not include an and integrate is not helpful. In my opinion. I like the idea of having a room where you know. If someone gets over stimulated they can. We can take them to. But as soon as possible. You try to get people to interact again. That's the only way we allow people to see
Vinh Nguyen: people as people and not people who have conditions and and and impairments.
John Anthony Dunne: Yeah.
John Anthony Dunne: yeah, on that point about inclusivity and the different things that you've you've you've seen and and tried to implement with some ministries at at your church? Where where have you seen the Church, you know in in person, in terms of your your family's experience? Where have you seen the church get it right and perhaps get it wrong. And as some kind of like lessons learned along the way.
Vinh Nguyen: yeah, I think you know, to be fair to churches who are trying to figure out some framework or avenue to accommodate people with disabilities.
Vinh Nguyen: I think there the fact that it
Vinh Nguyen: people acknowledged there needs to be something right. It is good.
having more awareness of
Vinh Nguyen: making sure you have
Vinh Nguyen: bathroom stalls that are
Vinh Nguyen: wider, so it can accommodate for people who are in wheelchairs
Vinh Nguyen: having accessible ramps right for
Vinh Nguyen: a, and whether you have a person with disability or not. But if a person were to show up.
Vinh Nguyen: you know it shows that you're in very basic ways that your church has
Vinh Nguyen: some sort of care, you know, beyond just a simple fact that oh, yeah, we have a blue square parking space for you if you broke your leg, you know, like we we actually care about people who have different impairments and disabilities, and and we try to accommodate that. I think that's one way. Churches
Vinh Nguyen: are starting to do it. Well, we're starting to see more ramps and more avenues of access which is helpful.
I think
Vinh Nguyen: also coming up with programs is helpful, although you know I know people are working on. The literature is very slim, but
Vinh Nguyen: you know Amos Young is obviously written on it. Chris.
Vinh Nguyen: I'm. Not even so. I'll say it's lasting pulls off. Maybe just recently came out with a book. Jesus disability. It's a very practical book for the Church. A guide to creating a an inclusive church
Vinh Nguyen: is the subtitle to that. And so I think there are people working in the avenue of helping
churches
Vinh Nguyen: create avenues
Vinh Nguyen: of inclusivity. So those things, I think, are are being done well is that there is an attempt. There's a a greater attempt in today's
Vinh Nguyen: society than there was, let's say, 2 decades ago, right? Those things are done well where I
Vinh Nguyen: don't think it's done very well is again the integration thing. People, you know. We're still trying to figure out how to integrate. Do I have enough buddies or people to shadow in case something does go wrong. Is Are there enough volunteers? And we what happens tends to happen is you use those things as excuses.
Vinh Nguyen: You know. I I I think it's easy to couch under. Why, I don't have a volunteer for this person today, so you know they have to either state with their parents, or they have to go to this room or what not, and we don't even give them a shot to operate on their own. Of course some people can, and some people can't. But you know, I think
Vinh Nguyen: a little bit more effort in that. I don't think I don't think we're all the way succeeding. I can't speak for every church. I'm really speaking anecdotally from what I've observed.
Vinh Nguyen: But that's 1 one thing. And then just involving people with disabilities in everyday activities.
Vinh Nguyen: Why can't there be a person who has a disability? You know whether
Vinh Nguyen: a person with down syndrome, or you know, physical or mental, or whatever other kind. Why can't they be door greeters?
Vinh Nguyen: Why can't they
Vinh Nguyen: pass an offering plate? Why can't
Vinh Nguyen: they participate in the the liturgy, or you know whatever tradition you come from? Why can't they participate in the actual service?
Vinh Nguyen: And why can't we equip people with disabilities in that way? And so I don't see that happening very much.
Vinh Nguyen: It's usually, you know.
Vinh Nguyen: couched under
Vinh Nguyen: deaconesses or deacons, or
Vinh Nguyen: what not, to serve the Church. But that's another question. Why can't we employ people with disabilities to be leadership positions.
Vinh Nguyen: Is there something innate about them that doesn't allow them to to have the qualities of what we've defined to be leaders or servants, or what not, because, to my knowledge, I don't see too many people with disabilities sitting on
Vinh Nguyen: elder boards or deacon boards, or decision making boards, or anything like that, you know. And so I think those are avenues that we should
Vinh Nguyen: look at, You know.
Vinh Nguyen: because oftentimes you have
Vinh Nguyen: able body people making the decisions for
Vinh Nguyen: people with disabilities.
Vinh Nguyen: but maybe you should invite them to the table
Vinh Nguyen: and allow them to have a voice in the matter, and in a. You know, a decision making role.
Vinh Nguyen: and perhaps that is a good way forward in churches. So I would like to see more of that.
Yeah.
John Anthony Dunne: Yeah, thanks for that, Ben. And we, you know, with some of the matters of inclusion and participation leadership, even that you were stressing there. You know one of the kind of central aspects of liturgy are the rituals that we participated. You know the Lord's Supper, the Eucharist and Baptism, and you know.
John Anthony Dunne: in some settings, you know there's there's controversy over the participation in these rituals of by by people who have an intellectual or developmental disability. Can you talk us through like
John Anthony Dunne: how how to navigate that that question?
Vinh Nguyen: Yeah. I as a
Vinh Nguyen: a a pastor in in
Vinh Nguyen: mostly Baptist settings. So that's from the setting. I'll have to speak from right. So
Vinh Nguyen: there are a lot of
Vinh Nguyen: different issues that come, I mean even disabilities aside. There are questions surrounding
Vinh Nguyen: who can participate in communion. And
Vinh Nguyen: you know, in Baptist life there's a big conversation on what this nebulous idea of an age of accountability
Vinh Nguyen: is, or something like that for baptism.
Vinh Nguyen: And you know who really determines that in in Baptist settings, in my experience it tends to be. We ask you a few questions.
Vinh Nguyen: and then we determined whether you're ready to participate in communion or baptism.
Right? And so.
Vinh Nguyen: But then what you find is a lot of the
Vinh Nguyen: kids or children, or young folks, or even teenagers
Vinh Nguyen: who answered yes, and then start participating communion, or or have been baptized, run into some crisis in their life.
Vinh Nguyen: where they doubt, or question, or wonder, or you know, for whatever reason, if they're actually saved.
Vinh Nguyen: if they're actually allowed to participate in these things, or they wrestle with these tensions in their life.
Vinh Nguyen: And so
Vinh Nguyen: you know, I think that's one of the the rubs right like
Vinh Nguyen: who determines
Vinh Nguyen: who gets to participate in, and what that looks like, because a lot of times I think
Vinh Nguyen: it's
Vinh Nguyen: the
Vinh Nguyen: the the person who's having a conversation with them, their longing or desire for a person in Baptist life to be saved or what not, determines whether you're ready.
Vinh Nguyen: But then again
it
Vinh Nguyen: I say this carefully. But in my tradition.
Vinh Nguyen: you know, you Don't, you just kinda
Vinh Nguyen: mention what these elements signify and mean, and then
Vinh Nguyen: explain who can participate. But you don't really police, who participate as some other traditions do right. I remember being a part of an Anglican service once, where, if you were not, it was a funeral, and you you would walk towards, and I
Vinh Nguyen: I think i'm closet Anglican, anyway. But don't tell my Baptist friends I you, whatever that means. But I I you know you would walk forward, and if you.
Vinh Nguyen: I I think they made us cross our arms like this
and not participate in communion.
And I've had similar experiences in Catholic churches.
I've actually been told
Vinh Nguyen: in Catholic churches. You can't participate
Vinh Nguyen: in communion, and so someone else tends to decide who can and who can't.
Vinh Nguyen: But
Vinh Nguyen: in that sense it's almost to me seems like salvation or person's
Vinh Nguyen: experiences is belongs to someone else, some other determiner.
Vinh Nguyen: And you know that bleeds over into people with disabilities because we look at them as almost either infants, or intellectually incapable.
Vinh Nguyen: able to express
where they are in their relationship with the Lord.
Vinh Nguyen: But internally.
Vinh Nguyen: you know I I can't tell what's going on in the life of a person. And so
Vinh Nguyen: I think one of the ways it ties into. Baptism is in Baptist life. We just let that we let people with disabilities, you know whether it's it's a
Vinh Nguyen: a person with down syndrome or person who has autism, or a mental or or or whatever disability, who can't make a conscious decision. We just couch it under
Vinh Nguyen: God, has grace for those people, and we just let them participate. I and that's in my experience what I see.
Vinh Nguyen: But
Vinh Nguyen: my own daughter has signified different.
Vinh Nguyen: She
Vinh Nguyen: sings song, she.
Vinh Nguyen: The blessing is one of her favorite songs, and she requests it all the time, and she sings it louder
Vinh Nguyen: than anyone else. Right so who am I to say what's going on in her life and her heart, and how God wants to reach and minister to a person.
Vinh Nguyen: In fact, I remember starkly when I was when ally before I was born, I was terrified. I was leading. I was a a
Vinh Nguyen: youth minister at the time, and it was there was a city-wide
Vinh Nguyen: meeting.
Vinh Nguyen: and you know all the pastors had to go up front, and
Vinh Nguyen: it was like an altar call of sorts, and and all these teenagers were coming forward, and I was weeping because I was
Vinh Nguyen: thinking to myself.
Vinh Nguyen: i'm about to my daughter is her life is on the line. I'm trying to minister to kids, but i'm not in a great mental place.
Vinh Nguyen: and I I I remember I close my eyes.
Vinh Nguyen: and I just started praying like Lord. Just let me
Vinh Nguyen: be a tool, or be effective in ministry right now to these kids that are here.
Vinh Nguyen: Help me to put aside. You know these these tensions and this pain in my heart for just a moment.
Vinh Nguyen: and the second I opened my eyes.
Vinh Nguyen: Directly in front of me, in the very front row was a young man who had down syndrome.
Vinh Nguyen: and he's singing at the top of his lungs, just belting it out with no care in the world.
Vinh Nguyen: And it was almost like
Vinh Nguyen: the good Lord above was just telling me
Vinh Nguyen: you're gonna be fine. You're gonna be good, and your daughter is going to be good.
Vinh Nguyen: and you don't have to worry about our salvation. Look at him. He's worshipping louder than all the other kids in the building.
Vinh Nguyen: And so you know, in that very moment I just remembered. Yeah, it's gonna be fine, and she's going. If she's going to have a faith, it will be because we do. We raise her in in the setting, and she can make that decision her own. And and you know, this kids worshipping who's to say he can't participate in communion or or baptism like
Vinh Nguyen: you know, he's doing more than most
Vinh Nguyen: people do on a Sunday morning. So
Vinh Nguyen: yeah, I I think
Vinh Nguyen: we have to be a little bit more intentional when it comes to communion and baptism in
Vinh Nguyen: observing, you know. Maybe it's a catechism sort. I don't know. I don't know how it works itself out. Maybe we we
Vinh Nguyen: walk through things with them. But I think we start at the place where we
Vinh Nguyen: really
Vinh Nguyen: do let people with disabilities, and how they express their life. Maybe
Vinh Nguyen: let that be the determiner, and not answering some set of questions or some series.
Vinh Nguyen: No questions, because
Vinh Nguyen: i'm not. You know I I can't say i'm an expert on it. But
Vinh Nguyen: If that's your expectation.
Vinh Nguyen: then that's an expectation that you almost know a person with
Vinh Nguyen: who's not a neurotypical person is not going to be able to accomplish it's a task that they may not accomplish. But then to exclude them from the sacraments of the church on those grounds
Vinh Nguyen: A. A. As a pastor. I don't want to answer
Vinh Nguyen: to God for that, you know. I want to let them participate on their on their own grounds, based on hey?
Vinh Nguyen: You know I I I don't know I don't know
Vinh Nguyen: what's going on in the heart, but I know whatever is inside there has been expressed, and that that to me is
Vinh Nguyen: is good enough, you know.
Vinh Nguyen: So yeah, I mean, we can get into so teriology and salvation how that all looks and ruffle some feathers, but on a very practical level.
Vinh Nguyen: My daughter blesses my life with how she worships every day
Vinh Nguyen: she's not. You know she doesn't
Vinh Nguyen: she hasn't been baptized on the Baptist tradition, she doesn't participate in communion. But you know I wrestle with that. I wrestle with that quite a bit.
John Anthony Dunne: Hmm.
John Anthony Dunne: Thank you for for sharing that, and that's that's a beautiful story that that experience that you had when when you when you looked up and and saw that man worshipping. That's that's beautiful since we're talking about salvation. I it's thinking, as a final question.
John Anthony Dunne: to hear some of your reflections on Hope and eschatology in relation to down syndrome. I know at you mentioned Amos Young earlier. I am Miss Young has a book called Theology and Down Syndrome, as you know, in which he
John Anthony Dunne: argues that when it comes to eschatology when it comes to resurrection, when it comes to new life in the new creation, that
John Anthony Dunne: down syndrome will will persist otherwise the person might be eradicated. And i'm just curious about your thoughts about that, as you think about
John Anthony Dunne: down syndrome and eschatology.
Vinh Nguyen: Yeah.
Vinh Nguyen: I.
Vinh Nguyen: It's been a while since I a a few years since I've read Amus's work on that. But I do recall
Vinh Nguyen: that conversation, and I do know there's an article that rebuts that
Vinh Nguyen: pretty heavily, and I have to track that down that that view that there's some continuity between this world and next world.
Vinh Nguyen: whatever that may look like.
Vinh Nguyen: I have quite a few thoughts on that. In fact, I, One of the papers I had written to present at a conference, is on this very idea of what the resurrection. Life
Vinh Nguyen: looks like for people with with disabilities, and
Vinh Nguyen: you know I
Vinh Nguyen: I I tend to believe there will be continuity, You know. I at first let me preface by saying that
Vinh Nguyen: we should start with saying, we don't really know what it's going to look like. We can only speculate.
but
Vinh Nguyen: as far as
Vinh Nguyen: it there being some continuity.
Vinh Nguyen: I've I've thought about it from a couple of different angles. One
Vinh Nguyen: there's the fearfully and wonderfully made, you know, and being knitted together in your mother's room.
Vinh Nguyen: So
Vinh Nguyen: either I have to admit that maybe God made some sort of mistake.
Vinh Nguyen: and is undoing a mistake
Vinh Nguyen: that he made in the New World.
Vinh Nguyen: which
Vinh Nguyen: seems quite inconsistent and doesn't work theologically
Vinh Nguyen: against his his nature and his character.
Vinh Nguyen: If I maintain that there's no continuity, then
I have to
Vinh Nguyen: read that passage a little bit differently, and and reinterpret that passage right?
Vinh Nguyen: Because that's not a sin thing that's not something generated from
Vinh Nguyen: a person, sin, or attributed to sin or original sin; that that some condition is a result of the fall
Vinh Nguyen: in some way which a lot of people believe. You know I have family that believes that that that
Vinh Nguyen: you know down syndrome is is one of the effects
of the fall, and you know.
Vinh Nguyen: and and so
Vinh Nguyen: I think
Vinh Nguyen: on, on the one hand.
Vinh Nguyen: to maintain that there's no continuity in a person's
identity.
Vinh Nguyen: because, for example, I I find down syndrome to be a an intimate part of Alley's identity.
Vinh Nguyen: and I can't imagine her in any other way. If you took it away from her, I wouldn't recognize her. She'd be a completely different person.
Vinh Nguyen: And so our personhood gets diminished.
Vinh Nguyen: and so to say, it doesn't continue. If we are in this new World able to recognize each other.
Vinh Nguyen: how would I recognize her?
Vinh Nguyen: On the other hand, the sin problem, and attaching it to sin?
Vinh Nguyen: You know, one might begin by asking, Well, a lot of people are having children. It's a If it's a result of the fall, why not someone who is not following the Lord, why not? Why not sin that way. If a person who is like in our family
Vinh Nguyen: doing ministry and and surrounding our life to to God's call, you know, you might say it's something like a
Vinh Nguyen: the thorn in the flesh, or, you know, misinterpreted passage something like that, that this is something some burden we have to bear
Vinh Nguyen: for following Christ, and you know a way that God's going to show a strength or a weakness, or you want to read that verse in light of disability which I you know I wouldn't read it that way, but I know people who have, and people have tried to use that voice to tell me. You know this is got something God's given you, or whatever I
Vinh Nguyen: to do, that would be, I I think, to me To attach it to sin would be to say, then why, how is got selective in that process? On who?
Vinh Nguyen: It's a particular disability? Who doesn't
Vinh Nguyen: so? You know, there
Vinh Nguyen: in in going into the new, like the new creation. I think the most important thing for me is that.
Vinh Nguyen: regardless of what disability a person has.
Vinh Nguyen: we have to treat people as persons. First.
Vinh Nguyen: you treat them in this world.
Vinh Nguyen: how you would expect to treat them in the world to come.
Vinh Nguyen: how you would expect the world
Vinh Nguyen: to come, you know, do when there are No, there's no pain or no tears, or
Vinh Nguyen: no suffering
Vinh Nguyen: in that sort, but it's not an erasure. It's not a a a a
Vinh Nguyen: but taking away of some condition.
Vinh Nguyen: And you know, when I was researching this, I think it's more. We've mapped our understanding of what a person is supposed to look or be like
Vinh Nguyen: into the new creation. And I think Jesus dispels a lot of this.
Vinh Nguyen: You know. For example.
Vinh Nguyen: Bardomaeus and the man that you know on the road like
Vinh Nguyen: when he's
Vinh Nguyen: when he has this cry in Mark Chapter 8,
Vinh Nguyen: Lord, have mercy on me! And all the surrounding people are telling him. Be quiet.
Vinh Nguyen: Don't. Bother them like. Okay. So now you know who you are as a person is actually your personal identity comes second
Vinh Nguyen: to
Vinh Nguyen: social identity.
Vinh Nguyen: The the society is determining who you are and who can talk, and who can't talk, and who's in, and who's out right? So personal identity begins to be lost.
Vinh Nguyen: And so already, even in the Biblical text we see personal personal identity being something that is challenged in John 5, for example, the paralytic he's almost
Vinh Nguyen: just
Vinh Nguyen: given giving himself into the fact of what people thought about him. I try to get to the pool, but people jump over me, and they go over me, and they get in there first. Right after Jesus asked him if he wants to be healed. He's already given up. This is this is how people people Aren't
Vinh Nguyen: giving me another look. They're not helping me. They're just concerned about themselves.
Vinh Nguyen: and that essentially Seems like when you read a lot of these narratives that have people with disabilities in them. It it seems to be a
Vinh Nguyen: There is some
Vinh Nguyen: construct where society has formed the identity of these people more, and and it's their own personal identity is lost somewhere in that.
Vinh Nguyen: And because that's the case, we tend to do that in today's society where we try to shape or or reshape, or map people to fit into our world in the way that we view it.
Vinh Nguyen: And then what we do then is we go. Okay. So in the New World everything looks like this
Vinh Nguyen: in the new creation. Everything looks like this, you know. All these things become new.
But
Vinh Nguyen: to me. That's that's just a strip of who God's created people to be. And I don't know that I am comfortable, saying that God made a mistake
Vinh Nguyen: in Alley's life, or any other person's life. That I think they are people first, and you know, can contribute to society and in their own ways, and we often try to reshape people, sometimes inadvertently.
Vinh Nguyen: but I think it's more beneficial to spend a lot more time listening.
Vinh Nguyen: In another example I I tend to think of is.
Vinh Nguyen: even though I don't think race is is tied to disability. But in my own life, for example.
Vinh Nguyen: people had a as a young man walking to school in a very impoverished part
Vinh Nguyen: of the country. I grew up in a city called Belleville, Illinois, which is outside of East St. Louis borderline, touches it. And the St. Louis, if you don't know, is always in like the top 5
Vinh Nguyen: murder capitals of the country.
Vinh Nguyen: and I deal with a lot of racism I have. I've been kicked at. I've been spat out. I remember hiding under playground structures where people spit through the little wooden slats and drop spit on me while I was waiting on the bus, so i'd hide. I remember being very shamed of being Asian. Why couldn't I be born white
Vinh Nguyen: or some different race where I don't have to experience or face
Vinh Nguyen: this from from my friends. I'm from peers and from people around me, and and no one to defend you right. You're kind of defenseless in those situations. And
so
Vinh Nguyen: for me to say, okay, Well, if it's attributed to how people treat or treat one another.
Vinh Nguyen: Then at some point you're gonna erase my asianness in the New World to where everyone gets along, and there's no more.
Vinh Nguyen: you know.
Vinh Nguyen: maltreatment or level of
some imbalance in in in social norms, or or fitting in or inclusion.
Vinh Nguyen: And I think in some ways it kind of relates to that right like we. We look at people with disabilities based on what they can't do as opposed to what they can do.
Vinh Nguyen: And so, you know.
Vinh Nguyen: we have some idea in the New World that there's going to be some erasure or some perfection, and I I kind of lean with Amos Young. I think there's a continuity. How it looks, what it looks like on I I don't know, but I do think
Vinh Nguyen: we value people in their personhood and their identity first.
Vinh Nguyen: and that doesn't get removed, so I I know it. It it's tough, you know. I've
Vinh Nguyen: I don't know if I share. But my wife is
Vinh Nguyen: she. I used we used to not get along.
Vinh Nguyen: We She She was like the perfect church girl like just always had her Bible, and i'm like this kid from the streets, and like no one's like that. No one's that perfect. No one's.
Vinh Nguyen: no one's as nice as you. No one reads their Bible that religiously. No one actually brings their Bible to youth group right.
Vinh Nguyen: and I've never
Vinh Nguyen: ever in my life heard her say a curse word
Vinh Nguyen: up into Alley was born.
Vinh Nguyen: and then I was like.
Vinh Nguyen: She came into the house one day really upset. She went to the supermarket and and came back with groceries, and she was in tears.
Vinh Nguyen: And then I said, Wait what you have, My, what happened? And I remembered, you know she she just loudly said, some a hole at tops, which is the local grocery store.
Vinh Nguyen: looked at Allie and and asked me if she was retarded, because she looks retarded, and I could tell something that was wrong with her by just looking at her.
Vinh Nguyen: and fortunately I was like, okay, I about to lose my job. Do I need to go to the supermarket and address the person, and she said, No, I have. You know it made me feel better that some mom heard it, and she went and apparently lit this guy up for
Vinh Nguyen: 10 min. But
Vinh Nguyen: there is already this perception.
Vinh Nguyen: this almost social ranking of inferior superior.
Vinh Nguyen: This and you know, I
Vinh Nguyen: I think.
Vinh Nguyen: until we begin to help
Vinh Nguyen: people understand that the King of God is not
Vinh Nguyen: about that. It it it is
Vinh Nguyen: about him coming to free those who are press. It's not an undoing, but it's it's not an undoing of a person. It's an undoing of what? What? We've made it, what we've turned it into. And so yeah, I think I i'm with Amos on this one, that there is continuing the New World, but it's
Vinh Nguyen: you know it's not a transformation of the person. It's the transformation of how we see
Vinh Nguyen: people.
Vinh Nguyen: I don't know if that helps. But no, that
John Anthony Dunne: that is a that is a great great word and a great great framing for it and thinking about transforming the way we see see other people and see
John Anthony Dunne: the diversity of of ability, and and that that, I think, is a is a great way of of framing it. Certainly Ableism
John Anthony Dunne: will be done away with in the new creation, and that that's a that's a beautiful word. So thank you so much, Vin, for for joining us and sharing all of your thoughts, and telling us about your wonderful daughter Ally, and and all of the the things.
John Anthony Dunne: and and what is in which you have grown as a person as a result of of parenting her. And just really I appreciate having you on the podcast.
Vinh Nguyen: Yeah, I appreciate you having me, John, you know. Obviously
Vinh Nguyen: I'm. Following a a great line of academic discussion. But it's good to be able to share a little bit of my pastoral sensitivities, and
Vinh Nguyen: you know God's gift to me and ally. You know she she is God's gift to me, and
Vinh Nguyen: I I needed it, you know. I probably perceived the world in a way that I shouldn't have perceived it, and he he gave me all to allow me to
Vinh Nguyen: see not only the world, but
Vinh Nguyen: perhaps even what the King of God should look like, you know, from from that point of view. So thanks for having me.