George Estreich is an award-winning writer. In this episode, George talks about raising his daughter, Laura, who was born with Down syndrome.
George Estreich is an award-winning writer whose work includes poetry, memoir, and non-fiction. He is also a musician who plays with the band Mule On Fire. In addition to writing and music. George is an activist, storyteller, husband, and father to Ellie and Laura. George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. He discusses how all people are more than a single identity and not only are stereotypes untrue, but they are also incomplete.
For more information about Down syndrome, see here.
Find and follow George: https://georgeestreich.com/
Laura's episode video with transcript: https://youtu.be/Su9LTiwiyGQ
Video with transcript of this episode: https://youtu.be/A5GHuyOK608
FROM THIS EPISODE:
The Shape of the Eye by George Estreich
Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich
Unexpected: Parenting, Prenatal Testing, and Down Syndrome by Alison Piepmeier with George Estreich and Rachel Adams
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro
What Can a Body Do?: How We Meet the Built World by Sara Hendren
Alison's blog archive: http://alisonpiepmeier.blogspot.com/
Unified Sports - Special Olympics
Individuals with Disabilities Education Act (IDEA)
Report from the Hastings Center about the marketing of NIPT: Bias and Inaccuracy in Marketing Noninvasive Prenatal Tests
[00:00:00] George: Where's that level of needing to step back as a parent and where do you surrender that protectiveness? And I think that's always true, especially when children are young, but again, having a child with disabilities who, in Laura's case, is no longer a child, it becomes that much more urgent.
[00:00:27] Carole: George Estreich is an award-winning writer whose work includes poetry, memoir, and nonfiction. He is also a musician who plays with the band Mule on Fire. In addition to writing and music, George is an activist, storyteller, husband, and father to Laura and Ellie. In the previous episode, we heard from his daughter, Laura, a young woman with Down syndrome. If you have not yet listened, be sure to do so. You can also watch the interview on YouTube by clicking on the link in the show notes.
[00:01:01] Welcome to Wisdom Shared, where parents and their children are the experts and where connection inspires change. I am your host, Carole Blueweiss. In this episode, we will hear a conversation with my special guest George Estreich, the father of Laura Estreich.
[00:01:18] We recorded this interview in two wide-ranging conversations. First, George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. By talking to George and reading his books and articles, I learned about how important language is, how people are more than a single identity and not only are stereotypes untrue, they are also incomplete. Both conversations opened my eyes to alternative ways of thinking about disability, language, storytelling, and biotechnology, which as you will learn has potential to do good and to do harm. Let's listen.
[00:02:10] Welcome, George, to Wisdom Shared.
[00:02:12] George: Thank you.
[00:02:14] Carole: Is there a childhood memory that you've had that sticks with you today?
[00:02:19] George: There are several. One that I wrote about in Fable and Futures was remembering being a student in fourth or fifth grade. And the extent to which I believed in intellect, believed in achievement, and believed in grades.
[00:02:38] This was just something that just seemed as factual as gravity to me. So what I write about in that book is seeing someone else's report card and seeing an F on it, and just being shocked and unable to comprehend this. And looking back on that in terms of understanding how deeply rooted the belief in intellect, its value and power, was for me.
[00:03:04] And using that to think about what does it mean then to have a daughter with an intellectual disability and what sort of changes do we need to make as parents? But what sort of changes physicians and professionals need to make in terms of how they think about people? Because the default belief in intellect is so buried.
[00:03:24] And in each of us, it's buried in our society's incentives and so on and so forth. So, that memory for me was pretty stark. And I don't think a lot about childhood memories, I just don't. But that one was for me, in Fables and Futures, was a springboard to thinking about these kinds of things.
[00:03:43] Carole: What triggered you to rethink that feeling? Or I suppose when you were writing, you started to question.
[00:03:53] George: I've been thinking about this stuff since Laura came along. Since before. It wasn't like Laura came along and I was like, huh, maybe being smart and being good aren't the same thing. Maybe you can be smart and not empathetic or whatever. I mean, these things had occurred to me and were actually kind of important to me, but to have a child with Down syndrome really calls you on that belief.
[00:04:15] It's one thing to say that I understand that intellect is only one power of the brain or that being smart is not the only thing. I think a lot of people would just agree to that as obvious, but to have a child with Down syndrome does require you to really rethink these things in a more than intellectual way.
[00:04:37] For most of both of my daughters' lives, I've been an at-home dad. I still am, though I came back to teaching in the last 10 years or so.
[00:04:44] Carole: Well, your students are lucky to have a professor for many reasons, but also just to have that viewpoint of that intelligence means many different things. And depending on who the person is in front of you, it can be different for different students. In my experience, that was frustrating. I felt like I was always labeled as a certain type of student, which was compared to the top student.
[00:05:07] George: Right, right. And essays and memoirs probe all aspects of human experience. It's not simply making an argument. Intellect is implicit in it. And we admire things that are witty, that are surprising, and that are deft with abstraction and all the rest and being talented with metaphor.
[00:05:26] That's partly a matter of intellect, but at the same time, for me, the best nonfiction is a way to a broader view of people. It's more than an intellectual performance. It's more than a performance of wit.
[00:05:39] Carole: Tell us about Laura.
[00:05:41] George: Laura has turned 21 and she's her own young woman. It's funny. One thing you learn when you have a child with Down syndrome is that there are very set expectations for how people with Down syndrome are. And stereotype of being warm and cuddly and they're placid, good-natured, loving, hugging, all that stuff. Laura has in general, a really positive outlook, but she also has just the same huge range of emotions as any of us.
[00:06:13] What is she like? She likes music. She loves playing basketball. We were just at a basketball tournament this past weekend. There's a really cool thing called Unified Sports. This is a really relatively new thing where people with and without disabilities play on the same team, and this is run through Special Olympics. So Laura has done that for a few years. She graduated from high school a couple of years ago, but she's been generally included. That has been good for her, in that she sees herself as belonging. It was very important for us to have her included in the gen ed classroom to the greatest extent possible.
[00:06:50] She has really close friends, we are now looking forward to thinking about the next phase. Now that she's turned 21 and thinking about the possibility of an apartment, what level of independent living will work for her. But when I say we're thinking about that, me and my wife, it's really talking with Laura and figuring out what she wants to do.
[00:07:10] What would she want to do in terms of work? How does she want to live? All these kinds of things. And that's something we can talk about, too. Where's that level of needing to step back as a parent? And where do you surrender that protectiveness? And I think that's always true, especially when children are young, but again, having a child with disabilities, who in Laura's case, is no longer a child, it becomes that much more urgent.
[00:07:40] Carole: We all project into the future and wonder what life is going to be like later. And I think all parents think about their children when they leave the home. I wonder 21, that's the transitional age. What does she want? Do you know that yet? And, what are her options?
[00:07:54] George: Laura would like to have an apartment of her own with a friend. And we've talked about that a lot. So, we're talking about that now. It's a little bit early to say what are the precise options. The general thing that I've always thought of is one, total independence is a fiction. We all need help in some way or another. We're all interdependent. Two, how much independence can Laura have with some help?
[00:08:16] And that comes down to some really nuts and bolts things like riding the bus, going to the store, knowing the town, being able to use the apps on her phone to get around, things like that or using transportation that's available to her. So, a lot of it is just about practicing and learning those things, which we do.
[00:08:34] I, you know, I'll talk about this and I know that there are other parents listening who are in just completely different situations. Every town is different. How much people can do varies from person to person, level of acceptance for people with disabilities, to strength as a community, local funding for personal support workers.
[00:08:57] So this is the kind of thing where I want to try and eliminate issues as I see them, but I'm very low to extrapolate from my experience. Here's what I'm doing, you should do it too.
[00:09:10] Carole: Yeah, no, I think that's really important. And yes, this is just your story, Laura's story. And just like any story, you could probably be more eloquent about that, but the idea that it's just a story, it's not advice. It's a great point what you say too because I think it's important to say how every town is different. Every situation is so, so, so different. I, for example, was just in Alabama for a baseball tournament with my son. And I just happened to sit next to a mom and her daughter who I thought might have Down syndrome.
[00:09:41] I knew I was going to be interviewing you. And I thought to myself, I'm interviewing parents and asking them, how would you like to be talked to when someone sits and they want to say hi, they're not sure exactly how to say hi. And I thought to myself, I've asked that question before. I need to say hi and I also would like to tell this mother about my podcast because she's somebody that actually might want to listen and learn from.
[00:10:06] And so I went through that little internal struggle and I finally broke the ice and we started talking and she was lovely. And the girl was five years old and uses sign language. And the mom was telling me that in Alabama near Birmingham, the support and the opportunities that children with disabilities have is remarkable.
[00:10:28] And that's why they moved there. And she's a medical doctor, as is her husband. And they said it's better there than in Seattle or Washington DC or in Boston.
[00:10:39] George: Interesting.
[00:10:40] Carole: So that just struck home to me too, what you just said. Your environment helps, but not everybody is lucky.
[00:10:47] George: Well, this, this also goes to a larger idea of disability. One pretty basic idea is disability is created by context. In other words, I think when a lot of people think disability, they're like, it's the broken thing. It's the missing leg, it is the inability to hear or to see. And that's what's called a medical model. It focuses only on the physical. The truth is that these things matter in context and they're created in context. To give an example, and I believe this is from Joseph Shapiro, who had a great book called No Pity, and this was some years ago, but he used the example of, if I'm remembering right, about curb cuts for wheelchairs. So if you're on a city block and there are no curb cuts and you're in a wheelchair, you were essentially on an island in a vast city.
[00:11:45] Like, you're there. If you have curb cuts, then your range of motion is, and possibilities, vastly expanded. The physical condition is the same, but the range of human interaction and possibility is vastly different depending on context. So that has to do with the built environment. But of course, also has to do with attitudes. To give an example, if everyone believes that people with Down syndrome are placid, happy, and love unsolicited hugs, then people with Down syndrome will be subjected to that. And then more than that, if they have a regular bad mood, like we all have, people expecting pure happiness will almost be surprised and betrayed.
[00:12:28] This is a long way off from what we were talking about too, but it pertains to how I think about disability in general. And especially for me, when Laura first came along, I was really focused on the chromosome. Down syndrome occurs as a result of one extra chromosome at the fusion of egg and sperm.
[00:12:48] Most people have 46, people with Down syndrome have an extra copy of the 21st chromosome, which is just a bundle of DNA, of instructions. And I was really focused on that. I made a lot of metaphors out of it, cause that's what I do. I'm a poet. But in the end I came to realize that I was focusing so much on the biological and that I needed to attend more to the social.
[00:13:13] Carole: Those curbs were made for people in wheelchairs to be able to transverse. But they didn't only just help people with disabilities. They helped moms who have strollers and they helped skateboarders. And that is also a very profound idea in terms of interdependence.
[00:13:33] George: Yeah, absolutely. The idea is just so common in thinking about disability, just the idea that making an improvement in accessibility, even if it's originally targeted at one group, can have benefits far beyond that. Closed captions are another.
[00:13:51] That kind of makes sense if you understand, rather than there being a strict line between able and disabled, that we are all human beings with different levels of ability and are each of us over the life course, we'll go from complete helplessness when we're born to more capability and then less if we live long enough.
[00:14:12] So of course, it makes sense that something like a ramp would be helpful to many people beyond those for whom it's intended. One of the best writers on this to my mind is named Sara Hendren and she has a wonderful recent book called What Can a Body Do? And she talks about disability and the world, but also the inventiveness with which people adapt environments around them. The idea that disability is a site of creativity, it's a site of a new perspective for seeing the world. So yes, yes, absolutely.
[00:14:53] Carole: The more and more that I speak with parents of children with challenges or disabilities, I realize that most everything that comes up is relevant to those of us who are lucky enough to live long enough.
[00:15:05] We're all going to be potentially that some version of that situation where we need more accessibility, for example. I think more and more people are talking about it because I think COVID also changed, I think, a little bit of how people view certain things where now all of a sudden people without disabilities are starting to have to think the way people with disabilities have been thinking for a long time. Like the need to do various things that have just been part of everyday life.
[00:15:34] What is Laura's relationship with her sister?
[00:15:36] George: They're five years apart. Ellie's 26 and she lives across the country. They'll talk on FaceTime. It's a really good relationship, but this is the kind of thing, too, where I hesitate to say much because at their age, I think like they should speak for themselves.
[00:15:51] Ellie has the protectiveness you would expect. Laura adores and worships her. And they'll argue over stuff too. That's just the sister stuff. I remember that when Ellie went away to college, Laura had this kind of escalating campaign to keep her from leaving. And then, I think that it was, I think in the end she said that she was just going to go over Ellie's room, I think as her art room or music room or something like that. Actually, it was just, she was very determined that this was not going to happen, but no, it's been something to see it evolve. In The Shape of the Eye, I talked a little bit about them, how they interact and get along, but it's such a time capsule now. That's when Laura was three and Ellie was eight.
[00:16:38] Carole: What does Ellie do now for work?
[00:16:41] George: She works as a research associate at a think tank in Washington, DC. Laura talks about how she misses Ellie several times a week, but luckily we can at least video chat, which is a good thing.
[00:16:55] Carole: You wrote in a few places that in writing The Shape of the Eye, that you spent time on your own misconceptions. What were those misconceptions you speak of?
[00:17:10] George: I knew almost nothing about Down syndrome when Laura came along. I think that it didn't even occur to me to be like, oh, she'll be like this. Certainly, ideas about the importance of intellect, which as I said, I would have sworn up and down, it's just like intellectual achievement, what level of education you get to, college, whatever, it doesn't matter.
[00:17:32] And I believe that, but still to have a child where you have to reconfigure those expectations it's okay, well, maybe I'm not as pure in my expectations as I thought. So facing the idea on a gut level, as opposed to a debate or intellectual level, as one thing. Really thinking about the value of intellect.
[00:17:49] One thing I write about early in The Shape of the Eye was just this mistaken belief I had that the future was lost. And so in shock, and it's just like, I don't know what's going to happen. And once you have that feeling, you realize that you have constructed a fairly detailed future of expectation.
[00:18:08] That idea is based on a pretty narrow, normal range of people, and an idea of normalcy. So expecting that, okay, well, one child will be the rebellious one and the other will be more responsible or something like that. Or maybe there'll be one boy, one girl, because that's balanced. And all of this stuff is within a range of unspoken ideas about normal, about the nuclear family, about all of these things.
[00:18:34] Then even though you wouldn't have consciously said, I expect things will be this way. You realize the limits on your ordinary imagination when those limits are broken by an actual event. Those were some of the misconceptions I had. And then there was a secondary realization that you had those conceptions in the first place, that you had these ideas about normalcy, about intellect, and that they need at some point to be reckoned with.
[00:19:05] In my particular case, I was processing all of this. Theresa and I were talking about this stuff all the time. It was also a little bit of really putting things off, just because Laura's first few months were medically dicey. That's when she had her heart surgery. So there was a lot of just dealing with that stuff day to day.
[00:19:25] Those were a couple of the misconceptions. I think inevitably because the rethink is so total of your own assumptions of everything else. It pervades everything else too, pervades writing, for example, which is something I'm still thinking about.
[00:19:43] Carole: In what way?
[00:19:44] George: Well, just in the sense that writing is performing on an intellectual stage. If we're talking about wit, if we're talking about irony and metaphor and all the rest, these are higher-order intellectual operations, if you want to use some vaguely computer-ish language. I think about that. And I think about what it means to be performing on that stage while having a daughter with an intellectual disability.
[00:20:14] The other thing is that, and I talk about this a little bit in The Shape of the Eye, the idea that when Laura first came along, I was like, okay, I've got to research. I've got to understand Down syndrome. I have to understand what it means to have an extra chromosome. I have to think about all this. And I did. That was necessary.
[00:20:30] I needed to learn about it, I needed to think about it, but in, in time, what I realized I really needed to do was think about people in a different way. That I specifically needed to learn everything I could about Down syndrome and then that would be it. It was that I needed to think about people in a way that was capacious enough to welcome my daughter.
[00:20:51] And not as like person with asterisk or like full person but with challenges, but as just like, this is Laura's way of being human, period. That just takes time. But if you think about people differently than that means, thinking about everything differently. Writing is about human mysteries. That means thinking about writing differently.
[00:21:12] Disability is directly involved in politics, but it's also, it's disability metaphors are weaponized in politics all the time, insults against people for being less intelligent. So once you start to think about people and value and intellect, this is, all of this, I'm not a philosopher -
[00:21:32] Carole: You're saying in part that there are words that are, like you said, the R word, and I guess stupid would be one word that people just kind of use without thinking.
[00:21:44] George: Yeah. And I'm, to be fair, I'm trying to distinguish between using the word stupid or idiot, which I've used, will probably use again. I don't want to lead this to just a paralyzed point where no one can say anything. I'm saying that there is a very specific way of using intellect as an insult that is toxic and troubling to me.
[00:22:06] Carole: You also said, and I wonder if this is related to what you're saying now, that something about understanding those words in a different way.
[00:22:16] George: One thing I have tried to do is, and this is just following people in disability studies, is to break that equation between disabled and sick, that you can be healthy and disabled.
[00:22:33] Carole: Yeah.
[00:22:34] George: In the most troubling accounts of Down syndrome that I've read, it is treated as a disease and disease features are highlighted. So I would prefer to understand it as what it is, which is a collection of probabilities. Some of which entail health risks, for sure. But it's not the same as being permanently sick.
[00:22:58] Carole: Yeah. You spoke about your potential to do damage by writing. Did I understand you correctly?
[00:23:05] George: I think there's always that potential, especially when one is writing about disability, as I do as a non-disabled person, one can do damage by overgeneralizing from one's own experience.
[00:23:21] Carole: Okay.
[00:23:21] George: So by saying like, this is how it is for Laura and therefore this is how it is. That would, I think, ultimately be a disservice to Laura. She's one person. And part of the point is that people with Down syndrome are not all the same. So I would rather bear witness to this one actual case as against the generalized stereotype. So that's one way in which one can do damage, how one can be damaged by talking over people who have the experiences that I don't have and can't have. One can mean well and be too certain, too definite, like this is how it is. And so those are a couple of ways.
[00:24:02] Carole: Now I understand. Yeah. Something that you wrote that I loved. I'm going to just read it here. "More important than whether we study Down syndrome is why. Is research meant to treat, to prevent, to shed light on some other condition? But then to consider why we study Down syndrome is to consider your first question about what's normal or healthy.
[00:24:27] In my picture of the world, Down syndrome is one way to be human. It's part of the normal range of variation. And though it entails many health risks, you can also have it and be healthy. To me, beliefs about these questions underlie the research on the condition. And so open discussion about those beliefs is necessary. And since story offers an understanding of life that a karyotype cannot, stories need to be part of the discussion."
[00:24:57] I just love your perspective. It's not necessarily a, like you said, a medical problem. Everybody's so different. Everything is much more complex than we give it credit for.
[00:25:09] George: Yeah. A story can be a useful tool for bringing the complexity of experience to people who are unfamiliar with that experience. They can suggest that experience. No, you can't know what it's like to raise a child with Down syndrome until you've done it. And even then, you know what it's like to raise that child with Down syndrome. But story can suggest it to other people and begin to maybe chip away at ignorance, if that's the case. That said, the flip side of that belief is that story can be incredibly dangerous, that it is equally possible to tell a very powerful story in which, for example, a child with disability is the ruin of a family or a child with a disability is purely an angel whose main role seems to be to uplift other people or be a beacon rather than just live a life for herself.
[00:26:05] I think story is potentially very powerful, but it's definitely not a universal good. The other thing I would say too, a lot of what determines the contours of disabled lives has nothing to do with story. It's obscure rules, insurer’s policies, things like that. And those have nothing to do with stories. They might be just a subsection of a law somewhere, but it could make a huge difference as to do you get to live independently or not? What level of support is available to you? So, it's yes.
[00:26:43] Carole: Constraints.
[00:26:45] George: Constraints, constraints. And so, yeah, story's a powerful tool, but it's not an ultimately powerful tool.
[00:26:52] Carole: It could be used for good or evil. You had mentioned about education and your belief that it was important for Laura to be included in the public school system. Correct me if I'm wrong.
[00:27:03] George: Well in the public school, but also in the general education classroom.
[00:27:06] Carole: You had written very poignantly that it was only 1975 when there was actually a law mandating that children with intellectual disabilities have access to that. So do you want to tell us a little bit about that and why you think it's important?
[00:27:23] George: Well that legislation is now the acronym IDEA, the Individuals with Disabilities Education Act. I think it was originally the Education for All Handicapped Children Act, but basically that before 1975, when I turned 11 and children with intellectual disabilities did not have a right to attend public school, there were increasing numbers of districts that did have special education classes, but there was no right in the United States. So Laura entered kindergarten in 2006, I believe. By then, the right had been long established, but as many parents can tell you, the fact that the legal right is there does not make things automatically easy.
[00:28:14] We've been relatively fortunate, but it can be very, very wearing to try and get access to the general education class, which means having lessons adapted to a doable level, having students participate in a meaningful way, as opposed to being in a separate classroom. Laura spent most of her time in the gen ed classroom, but she would be pulled out for things like speech therapy.
[00:28:41] And as time went on, for some things like math, which were not necessarily really adaptable, like for her, that would be separate. So it was kind of a split model. Why did it matter? I think the outcomes were better. I think that being around others and having higher expectations led Laura to strive for more, but it's also that she understood the entire school as her community.
[00:29:09] And other students understood that she was a part of things. And I don't want to make this too, you know, sunny and perfect like to suggest that there were no problems. That wouldn't be true, or to suggest that there is no ableism in the world. That's just not accurate. But I will say that things have come a long, long way since when I was in elementary school and middle school, where I understood that there was such a thing as a special ed class, but it was just completely remote down the hall.
[00:29:38] There was really no interaction between that population and the gen ed population. So I think that the benefits have really been there for Laura and the people she knew. She still knows she has friends who are disabled and who are not. That's a really meaningful thing.
[00:29:54] Carole: Yeah. And I'm sure for the kids that were not disabled, just as meaningful for them.
[00:30:01] George: I think so. It's the kind of thing where like talking to other parents, it varies from school to school, from town to town, from kid to kid within the same school. But in the main, we've been really, really fortunate in the people that we've been able to work with.
[00:30:17] Carole: Was she bullied in school?
[00:30:20] George: There were a couple of minor incidents, but it was not what we feared. But there were a couple of things that we had to sort out, but they were honestly in our experience, pretty minor, especially compared to what we worried about. So, no. I mean, she got a remarkable amount of support. That's the other thing that is one advantage of inclusion is I think that having come up with the same group of kids through elementary school, was to some extent protective like people cared about her. They stood up for her. I believe pretty strongly in inclusion.
[00:31:01] But again, this is something too where it's very hard to be absolute and hard and fast. I think there probably may be some situations where a separate placement is useful, but in general, I've been a very strong advocate for inclusion in the gen ed class.
[00:31:18] Carole: If you were to give advice to parents who are just learning that, you know, their child has Down syndrome, or maybe advice later on in life, do you have anything you'd like to say?
[00:31:30] George: It's going to sound really hypocritical because I've just been saying every situation is different and I'm not a template, blah, blah, blah. But sure, here goes. For those parents who like me, at the news of the diagnosis, and immediately started reading everything in sight, don't do that. I mean, it may be inevitable if you're like me and you believe in research and learning everything.
[00:31:50] But if you think about it, most of what is written about Down syndrome specifically may not apply to your child. Down syndrome is a collection of probabilities. Like if you start reading about Down syndrome, you get this huge long list and it's all things that can go wrong. But the fact is like, your child has those things or he doesn't, or she doesn't. It's easy to freak out going like, oh my God, look at this heart defect, this thing, this thing.
[00:32:20] And then you start to look and so the percentage of that is maybe 2% chance and it is correctable. Or you start to understand the probabilities. It's kind of like Down syndrome itself. Your child has it or doesn't. And so one piece of advice would be not to worry about the things that your kid doesn't have.
[00:32:39] The other thing, and this is for just really new parents. The one thing I would say is congratulations. It is the one thing that people really forget to say, or it's congratulations with an asterisk, or it's like, here's all the stuff you have to worry about. And here's the lawyer now so your child can participate in soccer or whatever.
[00:32:59] And it's just like, the main thing is, congratulations, you have a new child. So that's not so much advice as just a re-set.
[00:33:06] Carole: Talking to the parents who have friends that have a child, like instead of being in the same way, like, oh my God, what does this mean for this friend of mine? To start by congratulating them like you would any friend.
[00:33:18] George: Yeah. It's just congratulations is the starting point. That should be okay for advice, I think. Take the internet with a grain of salt and congratulations. That's not a bad place to start for people, especially with, who have a new child with Down syndrome.
[00:33:32] Carole: And now a question about advice for those of us who have friends that have children with Down syndrome.
[00:33:39] George: Early on, a lot of people felt compelled to say what it meant.
[00:33:43] Carole: What do you mean?
[00:33:44] George: Well, just to say what they can achieve a lot these days, or there are a couple of strangers, 'why didn't you test?' A diagnosis like this is an x-ray. It really shows you what people are thinking. They just revealed themselves. So the best thing to do is just to be a considerate human being.
[00:34:02] And if it's a friend of yours, just what do you need? If a parent needs to talk, then listen. If they're too tired to cook, bring them a casserole. I think that more general answer to your question is, well, what would you do if the child did not have a disability? It's like, start there, because maybe the answer isn't any different.
[00:34:22] I mean, if someone just had a child and to all appearances, normal and destined for a happy life, which no one knows what that'll look like anyway, you would say, congratulations. You would celebrate. You would listen. So this has come up with Laura a lot. The question you're asking is just like, okay, what should I do in this case?
[00:34:42] And often my first response is like, well, do we need to do anything different? So when Laura first took a dance class, the teacher was great and she wanted to know what accommodations can I make? Wonderful. And my first thing is like, let's see, maybe we don't need to do anything different or maybe there do need to be some like more concrete directions or something, but we'll figure that out as we go. But maybe the first thing to do is to not make it an issue.
[00:35:12] Carole: For her to ask that question, I think it's better to err on the side of, cause she doesn't know, you know, if your answer could have been different, like she needs a step stool or something.
[00:35:21] George: Right.
[00:35:22] Carole: There's that emotional, that visceral something that happens if you see someone who's different than yourself or if it's something that you've never experienced. So there's that experience of feeling that otherness.
[00:35:34] George: Yeah, sure. Not to be too harsh, but that experience of discomfort is not limited to disability. Some people have it around ethnicity, some people have it around sexual orientation or expression. And I guess if people are just uncomfortable with that difference, it might be good to just work on it somewhere else. Definitely don't make the person with whom you're uncomfortable responsible for alleviating that feeling or helping you process it. So I think I can speak for most of us saying we're not interested in helping other people process their discomfort, you know, maybe in some friendships it's close enough that that can be part of it.
[00:36:20] But I think in that situation, it should be about the parent and that's something for the uncomfortable person to kind of work on quietly on their own.
[00:36:31] Carole: Yeah, yeah. Thank you. I appreciate that honest answer. I would love for you to read some excerpts from your book.
[00:36:38] George: I was thinking about what to choose, and this is from The Shape of the Eye. This relates actually directly to the things that we were talking about is my changing ideas about Down syndrome, as, not just as a father, but as a writer. This chapter comes after Laura's first year, where she had had heart surgery and emergency hospitalization and a feeding disorder, which took a long time to recover from. And so, it came at a moment of comparative calm when things were beginning to settle out. This is partly about writing and partly about coming to understand Down syndrome in a different way.
[00:37:21] "To write a book about a child with Down syndrome as that child grows is to understand that life is water. It runs, slips, evaporates, changes course. And what seems an eternal truth, a child on a ventilator, a child who won't eat, the child who hasn't spoken, evaporates, leaving a changing present.
[00:37:43] Already, Laura's heart surgery felt long ago. She still took her heart medicine and we still went to the weird-smelling compounding pharmacy to get it. But cardiology was a footnote now, not the main story. So the story I had to tell was changing, too. For a year, I had felt like a parent to one child and a triage nurse to another. In the shock of diagnosis, I saw only the differences between them, the perforated heart, the changed brain, the slack muscle tone, the extra chromosome.
[00:38:11] And yet these facts were as deceptive as they were verifiably true. The differences were real, but their meaning was less fateful than I had supposed. This was true, I was learning, not only for hearts and brains, but for chromosomes as well. Until then, I'd contented myself with a simple understanding of molecular genetics.
[00:38:30] Laura had one extra chromosome which caused all the damn trouble. This was convenient for a writer. It was easier to riff on chromosomes if you didn't actually know what they did, but it was becoming clear to me that making metaphors from chromosomes without at least a rudimentary understanding of how they worked might not be without its problems.
[00:38:47] That understanding a genetic disorder might mean understanding something about genes. I began to look things up and to talk about what I had learned, which produced the smile Theresa gets when I try to talk about science. It's not, she said, as simple as having one extra chromosome, it's that there's more protein overexpressed.
[00:39:06] She explained: a chromosome is not a thing, a mysterious totemic object. It's a set of directions for producing proteins. Without these directions, no fertilized egg could develop into a child. No child could live the complex miracle of embryology and the ordinary miracle of maintaining cell pH and everything in between are modulated by proteins synthesized in the proper quantities and at the proper time.
[00:39:31] Since Laura had one more 21st chromosome than most other people, each of her cells had in effect a surfeit of directions. The proteins are overexpressed. This had not only affected her embryonic development but continues to affect her in the present. The more I learned about the 47th chromosome, the less it lent itself to metaphor. I'd compared the chromosome to a black mark, the missing apostrophe in Down syndrome, the weight that pulled us away from other parents. These metaphors, though true to the way I felt, had their limitations.
[00:40:00] First, they treated the chromosome as static and singular rather than dynamic and multiple. In so doing, I ignored the chromosome's function, its connection to the past of the species and its role in the daily work of the body. Second, by isolating the chromosome as extra, I reinforced Laura's separation from other bisomic children.
[00:40:19] Third, I allowed myself to trace all our troubles to a single biological cause. I had seen my lyrical sentences as a way of resisting an impersonal diagnosis and of witnessing to Laura's true dignity as a human being. It had not occurred to me that my metaphors might be complicit in everything I was trying to combat.
[00:40:39] I was learning again the lesson I'd been learning all year. As a father and a writer, I would need to avoid the dead ends, the red herrings, the patterns both obvious and false. I'd begun by assuming that Laura was essentially different from me. Because I believed this, I had isolated the heart, the chromosome, the eyes, and focused on what was different about them. In doing so, I had failed to see what she and I shared."
[00:41:03] Carole: Hmm, that's just so beautiful. I love your writing.
[00:41:06] George: Thank you.
[00:41:12] Carole: I'm here with George Estreich, author and father of Laura. We've been discussing his memoir The Shape of the Eye. I sat down with George on another day to discuss his award-winning book, Fables and Futures, and other far-reaching topics. We will hear why George wrote this book and his thoughts about disability, biotechnology, and the implications of language and storytelling in a more broad sense.
[00:41:35] I'm going to read something that articulates so well why you wrote The Shape of the Eye. You say "Before Laura came along, people with intellectual disabilities lived in the periphery of my vision. Laura's arrival thrust disability from the periphery to the center. And in response to that dislocation, I wrote a memoir.
[00:41:58] I had many reasons for doing so, but one was that since the attention Laura drew was inevitable, I might as well work with it. If people were going to stare, I might as well lend some depth to the picture. They were, as I found, often staring at a projection. Call it a huggable ghost, a vague shape, a diagnosis with a personality, a mix of sweetness and tragedy, of angels and heart defects and maternal age.
[00:42:27] That is a way of imagining Down syndrome and not the worst way, but it hides the individual. The projection, the ghost, obscures the child. This book had its genesis in that one. In writing the memoir, I came to understand that questions about Down syndrome are really questions about disability. That questions about disability are questions about who counts as human.
[00:42:49] That these questions are inextricable from our understanding of cutting-edge biotechnologies and that because few of us are experts." I stop at the word expert because I consider the parents that I interview experts on their own experience. You definitely have an expertise on being able to explain a very complicated industry.
[00:43:13] Why did you write Fables and Futures?
[00:43:16] George: Fables and Futures grew out of a lot of the things I began to think about while I was writing The Shape of the Eye. In The Shape of the Eye, it's mainly a narrative, it's a memoir, but it takes some excursions into thinking about technologies, prenatal testing, and the possibility of genetic engineering of people.
[00:43:34] And so I got interested in that and I wanted to explore some of the ideas I'd begun to think about. And I also wanted to do something that was maybe a little bit less personal, in that I'd written a book of poems before The Shape of the Eye, that was very personal. The Shape of the Eye was very personal in a conventional sense. It was very much about me.
[00:43:56] And so Fables and Futures has storytelling, it has stories about me and Laura, but it's really more outward directed, thinking about technology, thinking about disability in a broader sense than just Down syndrome. So I started some explorations in The Shape of the Eye and I continue them in Fables and Futures.
[00:44:14] Carole: You wrote that there are several problems with using a negative portrait of disability to sell biotechnology.
[00:44:22] George: Right.
[00:44:23] Carole: Can you explain what you mean by that?
[00:44:26] George: I did most of my thinking about this initially with thinking about prenatal tests and specifically noninvasive prenatal tests, which estimate the likelihood of Down syndrome and some other chromosomal conditions based on a maternal blood draw. Because these are for-profit tests, what I often found was that the advertising for the tests would offer idealized images, not just of chromosomally normal children, but of beautiful normal families in which no one was disabled, but also would offer negative portraits of the conditions being tested for. To me, that was problematic. It seemed that the profit motive was influencing the portrait of disability.
[00:45:20] And that was at cross purposes with people who might see disability simply as part of identity, as a basis for pride, as a basis for creativity, as simply a way of being human, that those visions were incompatible. It's a special case of the problem of negative portraits of disabilities and people with disabilities in general, but because it's joined to a technology with reach, it's potentially more concerning.
[00:45:53] Carole: I want to dive into this a bit because I have stars and red underlining and so many things. Like some of your articles that you wrote, because I was just like, no way. Oh my God, no kidding. I'm going to say this for you. You wrote it. "I don't oppose the tests, which many have found useful." You're not like anti-testing, but you say the ads, the fact of ads, as well as their substance are deeply problematic.
[00:46:18] Not only for people with disabilities, but also for the women they target. So do you want to say a little bit about that? Like what, what about these women that are pregnant and are deciding whether they get tested or not to get tested and are sitting with some results?
[00:46:33] George: So I should acknowledge before saying anything, one, this is incredibly thorny because would never have been, am never going to be someone who faces the use of these tests directly. For that reason, I try to constrain pretty strictly what I speak about. I come from a pro-choice standpoint, I'm pretty open about that in all my writing, but I don't make my family's choice a template for anyone else's.
[00:47:00] And I have really nothing to say about whether a woman uses a test. She should use it if she finds it useful. Or what she does with that test. That's just a no fly zone for me. What I'm interested in is the climate of assumption. What are the ideas about testable conditions about disability that feed into the use of the test?
[00:47:22] That's all the caveats. I think the problem for women using the tests is that there is a basic conflict between advertising for prenatal test and the ideal of genetic counseling, which is to be non-directive. This is one thing that I wrote about is that ads are directive. The best genetic counselor will seek to listen to perspective parents' values and help them come to a decision in line with their own values, not to nudge them subtly or otherwise to uptake of a test or not uptake to the test.
[00:48:02] Okay? So there's a problem in the ads being directive. There's a problem in their being misleading. There is a study that just recently came out from Hastings Center reports of brochures for NIPT, what's called non-invasive prenatal testing or NIPS for non-invasive prenatal screening or more and more CFDNA for cell-free DNA tests.
[00:48:24] It's all the same thing. But the study was a comprehensive survey of brochures, materials advertising these tests and found that they were often misleading, that they exaggerated the certainty of the test. They made them sound diagnostic and certain which they are not. And so forth. So having misleading information, especially when it's technically legally accurate, I think, is bound to lead to confusion.
[00:48:51] So that's a problem, but there's also the problem of advertising at all. I mean, if you think about it, advertising is composed of a host of appeals and some of them are direct and some of them are coded to show an image of a happy family with a chromosomally normal child cavorting in a meadow. I don't know what woman needs that to think through her choices about her own body.
[00:49:15] That's about driving uptake of the test and then profit. It's not something that anyone needs to help them make an incredibly personal decision. So to some extent, again, I'm like, as you rightly said, I'm not focused on the test per se. I am more interested in the way that it's sold.
[00:49:37] In a more recent piece, I talked about how another NIPT is pretty good at revealing fetal sex. And so it has been also marketed to people who want to throw an earlier gender reveal party. And in fact, one company has sponsored blog posts by parents who have cut into a cake to find pink filling or whatever. And so that's problematic, too. That, to me, that's just about the market.
[00:50:03] Carole: So many things you just said, I wanted to put an exclamation point that the idea that first of all, there's a lot of numbers that are being thrown out as meaning this, meaning that, from what you say, the onus is on the parents to decode what those statistics mean.
[00:50:19] And the companies don't feel it's their responsibility to necessarily really understand. Or like you said, it's a profit motive. So there's that sort of attitude that who's helping the parents really understand this information?
[00:50:32] George: In fairness, I think there are many doctors who do a really wonderful job of doing this. There are many doctors who are very direct and very helpful, and I think company information in ads has gotten better over the years under pressure. Now, the more common the condition is, the better the tests do. The rarer the condition, the lower the prevalence, the less well the tests do. The gist of the article was that many women were made very, very anxious about results that turned out to be indicated language like condition detected, which sounds certain and then it turned out to be not the case.
[00:51:14] Carole: And then you get into too the doctors that have the luxury of spending a little bit more time with patients versus those doctors that are maybe in more lower income clinics that just, I dunno if I'm probably saying something politically incorrect, but definitely you need the time with the doctor.
[00:51:29] George: I think that questions of economics are shot through all of this, that we can't talk probabilities in the abstract. There are factors like the time crunch on doctors, the fact that explaining complicated statistical truths takes more time than the whatever 12 minutes you're allotted, the fact that not everyone can necessarily afford these tests in the first place.
[00:51:53] There's the incentive, I think, on the part of medical professionals to recommend the test because of the possibility of a wrongful birth suit, which is to say, if someone has an affected child and said, why didn't someone recommend a test?
[00:52:07] Carole: You wrote that one of the things that concerns you is the people are looking for intelligence screenings, not necessarily health.
[00:52:16] George: The prospect of being intellectually disabled or having a child that's intellectually disabled is fearful to parents who understand how this economy works and how often it fails to accommodate those who, for whom this world isn't built. But that's a lot of people, not just intellectually disabled people.
[00:52:33] Carole: That's very profound to me that this isn't saying it exactly right, it's not the diagnosis or the child, that it's the society that is not doing what it needs to do to make it okay for any child.
[00:52:46] George: I would say it's always both, right? In the case of Down syndrome specifically, I would never deny that there are challenges that come from Down syndrome. And I think that there are conditions more or less severe that can be accommodated more or less.
[00:53:01] I don't think there's any perfect physical and governmental arrangement in which everyone will be perfectly at home. That said, I think we can do so much better. This is really a world built for the young and able who can drive. If you have tried to help an aging parent, someone with a disability and so on, you realize certainly things are better than they were 40 years ago in many ways, but boy, is there long way to go.
[00:53:33] Carole: Yeah, that's for sure. And then the idea of blurring the distinctions between disability and disease. I thought that was really interesting, that you say demits the perspective of many with disabilities that also relates to our elderly population, but would you like to say more about that, that what you mean by that blur?
[00:53:53] George: A late friend of mine, Alison Piepmeier, who wrote the book Unexpected, which I also worked on, called disability an embraceable form of diversity, which I always liked. Often, disability is treated only as disease, as something to prevent, fix, or cure. People's views of their own disabilities vary obviously all over the map, but a simple equation of disability and disease almost always tends to lead to stigma.
[00:54:25] Carole: One thing that I think is important to talk about, you mentioned how with Down syndrome and with many disabilities, there's that stereotype that happens. And I thought that was really important to understand because I'm probably guilty of that. You've thought deeply about it. So I'm just going to give you the floor. Why is that dangerous and why do you think that even happens? That people just make it such a simple prototype as if everyone's the same?
[00:54:53] George: It's obviously not restricted to Down syndrome. The stereotypes of Down syndrome is that they're all sweet. They're all good-natured. They're all placid. This is not true.
[00:55:04] Stereotypes only thrive where you don't know people. Or if you've met people, but aren't really listening to them. I see that happen a lot. I used to measure it in terms of the octave range of people's voices. If people met Laura, their octave voice would jump two octaves. Laura is 21 now. And ideas about disability, the welcome of disability is changing really fast. I think it's changed since she was born. And one very informal anecdotal measure of change for me is the fact that more and more people meet her and they say, 'hi, Laura.' It's not a big deal. And that's a welcome change to me. Your question was about stereotype and I think the good-natured thing is problematic.
[00:55:49] One, because it's so bifurcated that on the one hand, people with Down syndrome are seen as good-natured. And on the other hand, they're seen as examples of bad nature, as defect, as abnormal. And so I don't see how those fit together. They just sound like really sick golden retrievers or something. And there, my point is that they're actually people, they're individuals.
[00:56:12] That's a lot of what I try and get across. That's why I'm glad Laura got a chance to just speak for herself today. The thing about stereotypes is like, even if they're nominally positive, they're still a kind of dismissal. Like even if it's a nice thing to say, as opposed to a really toxic thing to say, it's still subordinating the individual to this group.
[00:56:34] And it's still because Down syndrome is a genetic condition, implies a genetic determinism, which is to say who you are is because of your chromosome, because of your genes, who you are is encoded and fated. And I am skeptical of that belief for Laura.
[00:56:59] Parents definitely do get a little bit like, oh, I could never do what you do, that kind of thing. And it's just sad. It's like one wants life to be ordinary. So to be called inspiring and extraordinary and all that stuff is maybe a little bit unwelcome and reading what others have had to say about this is it's I think often unwelcome because it is just a hair's breadth away from pity and maybe another hair's breadth away from like, thank God I'm not you.
[00:57:32] Even if it is with good intentions, whatever that means. And this goes back to what we were talking about in our first conversation. You were asking about what should people say to new parents or what do people say. For me, at least, questions like how are doing, how are things were better than judgments.
[00:57:53] One doesn't necessarily want speculations or answers or to be told what one's life means just when you're working it out. The meaning is something that you want to own. So even to be told that, oh, you're inspiring. It's like, yeah. You know.
[00:58:11] Carole: Yeah, it's well-intentioned, but it doesn't work that way. I do want you to read your chosen excerpt.
[00:58:18] George: I'm reading from the book, Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves. I'm reading from the beginning of chapter six, which describes a visit to the National Society of Genetic Counselors annual education conference, where I went to present some preliminary work on ads for prenatal tests.
[00:58:40] So the things we were talking about before, my questions and issues with advertising these tests, those began with essentially studying websites and thinking about the messages aimed at women. The messages about disability and about women. And what I found when I went there was that this was just an entire commercialized world centered around DNA and products relating to DNA.
[00:59:05] So in this section, I describe arriving there and meeting my friend Katie Stoll who's a genetic counselor who I've collaborated with over the years. And also talk a little bit about my late friend, Alison Piepmeier, who had visited the same conference and had some thoughts.
[00:59:23] "In mid September of 2014, I flew to New Orleans to talk to a ballroom full of genetic counselors and industry representatives about the way NIPT is advertised to American consumers. If I were an investigative reporter, like my co-panelist Beth Daley, I could discuss the regulation of laboratory-developed tests or the stories of women whose lives were upended by inaccurate results. If I were a genetic counselor, like Katie Stoll, the chair of the panel with whom I'd spent hours discussing the tests in the weeks before, I could speak directly to the clinical realities of genetic counseling, to the industry-sponsored science behind the industry-sponsored marketing and to the statistical manipulations that make the tests seem more accurate than they are. Since I am a writer, I talked about persuasion, focusing on the web pages aimed at prospective mothers.
[01:00:13] I wanted to highlight the charged values just beneath the neutral-sounding copy to counter the common mantra simple, as in a simple blood draw, with the human complexities at stake. I hoped to do in a way what targeted persuasion does, to cut out the middleman between me and my hearer.
[01:00:31] Genetic counselors occupy a key position in the prenatal testing process. They explain the tests and the conditions tested for to prospective parents. Because they're also the targets of industry marketing, I want it to speak to them in a direct and unfiltered way. Genetic counselor, unlike writer, is a new job description in human history. The jobs are surprisingly similar. Both involve a delicate, complicated, active communication involving recondite information and the deepest human mysteries.
[01:01:00] Only one, though, depends on the ability to process gigabytes of data with proprietary algorithms. You would have thought that I've gotten to know a genetic counselor or two before Laura turned 13, but I only came to know one as a writer and friend, not a parent and long after I had any questions about what Down syndrome might mean for my family.
[01:01:20] By then, I had begun explaining Down syndrome to medical professionals instead of the other way around. Working with Katie and traveling to New Orleans was part of an effort to both teach and learn. But I had become friends with Katie in the run-up to the conference. I'd gotten to know her through another friend, Alison Piepmeier, the feminist scholar and writer and mother to Maybelle who has Down syndrome.
[01:01:40] Alison and I had come up with the idea for the panel a year before, but Alison's brain cancer had returned and she'd had to drop out because surgery and a brutal course of chemo and radiation were about to start. Beth, the reporter had agreed to step in. Alison died less than two years later. Her friendship was one of the gifts that accompany Down syndrome, the broadening of my world, because of the people I meet as a direct or indirect result of Laura. Alison's daughter Maybelle is a few years younger than Laura and they have not yet met, but I hope they will one day. Alison was fierce in principle, ebullient in person. My superhero nickname for her was the friendly firebrand. And though she was keenly aware of the problems with the messaging around prenatal testing, she remained radically open to talking to anybody. She had attended the same conference a year before and reported on one conversation on her blog.
[01:02:32] Her use of bullet points was typical. One, all the genetic counselors are women. All the drug reps are men in suits. Two, I'm a huge advocate of abortion rights, but it was a little weird yesterday talking to an MD who performs abortions. Among other things, she said this one couple saw that TV show with a kid with mosaicism - that's Life Goes On with Chris Burke who doesn't have mosaic Down syndrome - and they said, our baby might be nearly normal. I said, no, that's not realistic. I didn't let this doctor know that I have a child with Down syndrome because I wanted to hear her real unfiltered thoughts and wow, were they troubling.
[01:03:07] For instance, she was shocked that people might adopt with a Down syndrome. Maybe it's a psychological thing. She said they'll never have an empty nest. Believe it or not, she actually told me that all people with Down syndrome get Alzheimer's. First, this isn't true. Second, it's something I criticized in my talk on Wednesday. Do we need to be talking about Alzheimer's when a child isn't even born yet? So I can stop it there with Alison's voice.
[01:03:29] Carole: Wow. I appreciate it, I have like tears in my eyes. I want to thank you so much for spending time with me and answering some of my questions.
[01:03:38] George: They were great questions. And thank you for the opportunity. No, this was lots of fun.
[01:03:42] Carole: You take care. Bye bye.
[01:03:44] George: Bye-bye.
[01:03:51] Carole: George described his late friend, Alison Piepmeier, as one of the gifts that came to him as an indirect result of raising Laura. When I randomly found Allison's book, Unexpected: Parenting, Prenatal Testing, and Down Syndrome, on a table in the College of Charleston bookstore, I too was indirectly led into the world of parenting children born with Down syndrome. On the book's front cover, I saw a girl in pigtails laughing as she straddled a red tricycle and a tall curly haired brunette, who was also laughing. I picked up the book. And as I read the back cover, I learned that the woman was the author, Alison Piepmeier, and the girl was her daughter Maybelle, a child who had been born with Down syndrome.
[01:04:40] At that time, along with being a mom, Alison was an author, an editor, scholar of feminism and disability studies, and an associate professor of English at the College of Charleston. While writing her book, Alison was diagnosed with cancer. She asked George Estreich and Rachel Adams, friends and colleagues who each had a child with Down syndrome, to help her finish the book.
[01:05:04] Reading Unexpected, I could feel the collaboration, the mutual respect and the open-hearted interdependent relationship between the three writers and editors. George wrote in the preface that they hope this book will be the beginning of a conversation and not an end. And Alison wrote, "I met many other mothers who were taking on the hard work of changing the narrative, of changing the narratives about Down syndrome.
[01:05:33] Almost all these women had initially encountered negative perspectives. They were familiar with the story that their child or potential child was tragic and imperfect. And they had to fill up tools of resistance, ways of recognizing disability as a form of human diversity. These mothers showed me different ways we can radically reframe human worth. Their approaches differ, but in every case, the mother's experience of raising their children altered their perceptions of the world in unexpected, complex and enriching ways."
[01:06:07] You can find the transcript, the links to George's website, and the books mentioned in this episode in the show notes.
[01:06:16] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.