Below are some excerpts of an interview with Jisun Lee and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on January 29, 2015. These excerpts have been edited for space.
On blogging and discovering the Down syndrome community
Jisun: Well I’ve always liked writing and I’ve always…journaled on and off all through my life and that was, that’s always been just an important thing for me. Putting words to what I feel. Because sometimes…you know, stuff’s rolling around your head and somehow you don’t really know what it is until you actually try to organize it for somebody else. So then we had our third kid and in the beginning it was no different. We had him at home we home birthed all of our kids and he didn’t deal with like a very average kind of experience. Not to me obviously, but, you know, there was nothing, there was nothing unusual about the birth but…after he was a few weeks old, we started thinking that he had Down syndrome and so that was a really big turning point for us…We had told our midwife, and she, you know, clearly, she was like, it could or it couldn’t, and she didn’t give us a definitive opinion either way and she was like, “You know, you guys should get tested” but there was that period of limbo time and I was really obsessed with the internet at that point. And I just fell in this kind of, down this rabbit hole…one of the things that I found was blogs and other people’s experiences online and that like really saved me but also I notice that they were all white.
Jisun: Yeah and I was like…”Well, this can’t be actually what it is,” you know, this can’t actually be reflective of what it is…I’m kind of embarrassed now thinking about…I would Google half Asian downs syndrome. Like, I just wanted to see the, the faces of somebody who looked like my son, you know? And there were none. I mean, I knew they were out there, but I couldn’t find them. So I felt like. I really wanted to say like look, you know, “It’s not just this one experience, you know?” And I thought, and I saw that in the kind of narrative that gets created, that the dominant narrative in the Down syndrome diagnosis story…It tends to be white, and you know fairly privileged. And I don’t mean to like say that this is a bad thing of those parents. I mean, you are what you are.
Jisun: But it tends to be that and it tends to come from that background and so, you know, it doesn’t, I, know it didn’t speak to me. And so I was, like, well, I just want other people to know that, like, that it’s not all the same. There are other people out there are these Intersections of, you now, race and class and disability, and all this stuff.
Alice: It’s actually why I was so excited to see your blog and to see that you’re an Asian American woman writing about disability.
On dominant narratives about disability and Down syndrome
Jisun: But in the Down’s syndrome world, a lot of conversations start with, “I didn’t get tested”…it’s like this badge you have to wear to be legit. Or you have to, you know, there’s always this preface where you have to say, you know, “I would have never considered abortion” because it’s this dirty, dirty thing, you know, and since, and I feel that too. It’s a really, it’s a really difficult topic for the community to know that there is this thing happening out there, where people, you know, find out that their children have Down syndrome and they say no to that.
Jisun: But I think before we had my son and before I got in the community, like it seemed really black and white to me…you know, I’ll backtrack…we had a home birth and part of home birth is really like not wanting to become overly medicalized…and part of it was this testing thing and I had never wanted to do the testing, because once I started looking into it, I was like, this is not even that accurate. Like, I’m gonna drive myself crazy, but I remember my midwife telling us…”You know, what you need to kind of think about where it’s going to lead you.” And once I realized like, that there were these kind of like at some point in the testing game, you might end up at a fork in the road, and you might need to make this choice, I was like, “I don’t want any part of that”…so that was a big thing to us. Like, for us saying no to prenatal testing was, was, it was an actual saying, like, we will take any baby we get…This is like a political choice.
It was in a lot of ways in, I mean, it was kind of an ignorant political choice, honestly. Cuz, I don’t know, what did I know about disability at that point? I didn’t, I really didn’t and I didn’t know much about the conditions that I was declining testing for, even, either, but…those were my values. I was like, I’m not going to have an abortion at 22 weeks. That’s, that’s just not something I could do, and so that was, that was something that meant to us…but then, you know, so like at that point then we fast forward like three kids and then we have this kid with a disability and then I started meeting all these parents who had tested, and still had their kids. And they had tested for really different reasons than I had ever considered.
On the choices and options faced by parents of kids with Down syndrome
Alice: Tell me about kinda your experience with health care providers and this was really helping professions. In terms of K’s development and his health needs and…all the things that he has to do purely because, of his diagnosis and how does that impact your family and the dynamics between, you know, his siblings and you?
Jisun: Well, I’ve tried to really minimize the impact. Cuz it felt like, you know, and I don’t know how it is with other disabilities, I feel like Down syndrome is a really interesting. It is in an interesting place because unless you have medical, a medical thing, you know, like clear I, I understand some of the medical stuff and heart stuff…You know, if, clearly you need to intervene at that point, if the heart’s not pumping but. K…didn’t need heart surgery. The biggest medical issue he has is that he takes thyroid meds once a day. That’s it and otherwise, like, he’s just, he’s just slower at reaching the same milestones and I found this, like, real philosophical issue with this idea that, that wasn’t enough… so most people you could get PT, OT, and something called in California, you get something called an IDS. It’s an Infant Development Specialist, so you could technically get those like once or maybe even twice a week. It depends on how much you push for that, but…that’s three appointments a week where somebody’s coming into your house and it’s really disruptive…I know they don’t mean it that way, I’m doing it in the house that’s supposed to be less disruptive and it is to some extent but, you know, one hour of your day to have somebody come in your house isn’t actually an hour. It’s the entire morning…You know, what are we, what are we doing here? Like, somebody comes in and plays with my kid for an hour.
Jisun: And yes, they have some expertise that I might not have, but do I need to do it this often? And I felt like there was this…intangible effect of having somebody come into your house, and constantly being brought back to that place where you have to evaluate your kid.
Jisun: Like I was constantly being pulled back into this place where I was like categorizing him…[You know, talking about, it was all, it was mostly about deficit. It was talking about what he couldn’t do and I was like, “So what does this mean?” Like, for me to come back, you know, so many times a week, time and time again, and talk about what he can’t do.
Alice: Medicalizing it.
Jisun: Right, and it’s something that I wasn’t entirely sold on if I could change it. I was like, if you could change it, that would be something to debate, but. It’s like I don’t think I can change him in this way.
Alice: And this is based on this developmental norm, right?
Jisun: That’s not, he’s not never gonna be that….then I had this point where…the girls are getting old enough…they’re gonna start to ask questions…and what am I gonna say to them? What kind of like narrative am I gonna create about why this person comes over and over again, to play with him in ways that are no different than I do? And I couldn’t think of anything…I couldn’t come up with a story that, that felt good to me. You know, what was I going to say?…I kept going down these different paths of trying to explain it and nothing came up and I was like you know, if I can’t justify this to my other kids. What am I going to say, you know, If, if I can’t justify it without stigmatizing one kid to another kid? I can’t do this.
Alice: I think what’s so, you know, refreshing is that you’re going against this tidal wave.
Jisun: It was hard…I felt a lot of guilt…and it wasn’t very popular.
Alice: And I think not many parents question those kinds of recommendations, because you know, you think, “Oh, I want to do every thing I can …where everything you can to maximize your child’s life.” And especially for kids with disability you would want them to do every single [intervention]. Go to every single class. Every single thing to make them as, [‘normal’ as possible].
Jisun: There’s nothing wrong with therapy and we still do some.
Alice: But on your own terms.
Jisun: Yeah, on my own terms, but I think it’s been valuable on my own terms and I feel like one of the things is that, is this idea that out there, that you can kind of just like stuff your kid full of information and everything will be okay, and I kind of feel like, you know, but, that’s not what I want for therapy… I can’t make him normal you know he has to decide where he’s gonna be on that spectrum and you know he has to, he has to embrace where he’s gonna be. Is he gonna you know try, does he wanna be in the middle? Does he want to be on the edge? You know that’s a choice that I feel like you have to give your kids…and I didn’t want to do that. I didn’t want to make his entire childhood about fitting trying to be in that middle.
From the About Me section of her blog, Kimchi Latkes:
My name is Jisun. I’m Korean (the kimchi). My job is to keep the kids alive and make sure the house doesn’t burn down (I have, unfortunately come very close to failing on the latter). I have a background in social services and professional cooking (I know, what is wrong with me?).
I’m married to the Latke. He works his butt off to keep us all clothed, is an amazing father, and is hands down the best person I’ve ever met in this world. He likes building stuff, making the kids laugh so hard they pee their pants, and any kind of noodle dish.
We have three four kids (the spicy taters). Mouse is 6 years old, going on 30. She is turning into a real philosopher, and has the kindest heart in the family. Chipmunk is almost 4 years old. She is mostly concerned with copying her big sister, preventing any of her big sister’s goals from coming to fruition and misbehaving with such panache that it is hard to really be mad at her. The Little Pirate is 2 years old. He’s added some surprises to our lives. Surprise pregnancy. Surprise Down Syndrome. Currently, he’s devoting himself fully to being a toddler. And, if it weren’t enough to have one surprise baby, we figured, why not have another? Sparrow just joined us, and she’s turning out to be all smiles and snuggles. I’m trying to soak that in, because I know it won’t be long until all four are blaming me for all their issues and demanding I foot their therapy bills. All the spicy taters have been born at home, on purpose.
We are just a regular old family, raising children all along nature’s continuum.
Email: kimchilatkes [at] gmail [dot] com