Carole Blueweiss is a Doctor of Physical Therapy, Geriatric Clinical Specialist, and Yoga Teacher. She treats adults and children, and has received degrees from Tufts, Boston University and Northeastern University. She is a practitioner of the Feldenkrais Method® and the Anat Baniel Method® NeuroMovement®.
Carole hosts a podcast titled Wisdom Shared and is a posture coach and documentary photographer on a mission to help people stay tall.
Subscribe to the Wisdom Shared Podcast!
What do they wish they knew then that they know now? These parents share their insights and experiences with traditional and non-traditional professionals, their advice, and their wisdom. The lessons learned are valuable for all parents, health care workers, and educators.
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
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: http://alisonpiepmeier.blogspot.com/
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.
Laura, a young woman with Down syndrome speaks about her life and goals. She graduated from a general education program, went on to become an advocate, an athlete, an activist for the disabled community and an educator. This is the first in a series of three episodes.
Video with transcript: https://youtu.be/Su9LTiwiyGQ
Laura, a young woman with Down syndrome talks about her life and goals.
For more information about Down syndrome, see here.”
FROM THIS EPISODE:
The Shape of the Eye by George Estreich
[00:00:00] Laura: I am friendly, caring, passionate. I’m strong and I’m powerful. I am very honest.
[00:00:13] Carole: Laura Estreich is a 21-year-old woman living in Oregon with her parents. She’s an advocate, a community activist, the sister of Ellie, and the daughter of George and Theresa Estreich.
[00:00:25] Welcome to Wisdom Shared, where parents and their children are the experts and where connection inspires change. I am your host, Carole Blueweiss.
[00:00:37] In this episode of Wisdom Shared, I have as my special guest Laura Estreich, who shares with us her wide range of athletic interests, her experience with vocational programs, and her dreams for her own future. Laura was born with an extra copy of her 21st chromosome. The medical word for this is trisomy 21, which is also known as Down syndrome.
[00:01:03] It’s important to know that not all people with Down syndrome are the same and not all people with the diagnosis of Down syndrome have that extra copy of the 21st chromosome. Although most do. There are other variations, though. And just like Laura’s story is a story about one individual and just like each person listening here has their own story, so are people that have Down syndrome unique.
[00:01:34] As a baby, Laura survived a successful heart surgery, and she went on to complete a high school degree in a general education classroom. I reached out to George first. And when he agreed to be interviewed, I asked him if he would please ask Laura, if she would be interested in also being on my podcast. And thankfully she said yes, and now we will hear from Laura. And at the end, Laura in dialogue with George, her dad. Let’s listen.
[00:02:11] What did I forget to do?
[00:02:14] Laura: Recording?
[00:02:16] Carole: Yeah! We were just talking for like five minutes and I forgot to record. Oy yai yai. Let’s start again. I asked you, what’s your full name, how old you are, and where you live?
[00:02:27] Laura: I am Laura Estreich. I am 21 years old. I am from Oregon. That’s my hometown, born here, raised here, I live here. And I live with my parents. I have a sister named Ellie.
[00:02:42] Carole: What are some things you like to do?
[00:02:45] Laura: I like listening to music and being active, eating healthy, spending time with my friends, biking, and swimming. I love bowling. I love playing basketball. So I’ve been watching college women’s basketball.
[00:03:05] Carole: What’s your favorite team?
[00:03:07] Laura: My favorite team is UConn.
[00:03:08] Carole: Me too! Anything else you want to say about your hobbies?
[00:03:13] Laura: Yes, I am big on Pinterest. I’m a social media fan. I like reading a lot, the news on my phone every day.
[00:03:23] Carole: That’s great.
[00:03:24] Laura: Yeah.
[00:03:25] Carole: I wish my son would read the news. What do you love about your parents?
[00:03:30] Laura: They’re both lovely great role models to me. They are great being professors. This one is great daddy because passion, great energy, active person, and great cooking.
[00:03:49] Carole: He sounds awesome.
[00:03:51] Laura: I think he is.
[00:03:52] Carole: What do you think about school?
[00:03:55] Laura: Oh, Carole, I love being in school a lot. I’m passionate about school and study hard. So I have been great student role model.
[00:04:06] Carole: Who do you look up to?
[00:04:07] Laura: I’m going to say my best friend Maya. She’s my hero. My parents are professors and her dad’s a professor too. So I am in a disablity community because I grew up in hometown includes people in disablity communities, and people with Down syndrome just like me.
[00:04:28] Carole: I see all the books in the background there. I know your dad likes books. Do you have a favorite book?
[00:04:35] Laura: My favorite book is The Shape of the Eye.
[00:04:37] Carole: Tell the audience why that’s your favorite book.
[00:04:39] Laura: The Shape of the Eye I get keeping my journey, passion, my personal life. I want to be a writer like my dad. That would be awesome.
[00:04:51] Carole: What kind of book would you write?
[00:04:52] Laura: A book about different subject. I will be writing about with people autism and different kinds of disabilities.
[00:05:03] Carole: It sounds like you want to educate people and make them more aware of what it’s like and maybe help people understand more?
[00:05:12] Laura: Yes, exactly, yes. For me, I’m hard to understand, because I was born, I had a heart defect, so I had a hard time when I was born. I used to have speech therapy, helping me talking, speak slow and clearly.
[00:05:28] Carole: I can tell that you’re working hard on speaking slowly and clearly. It’s not so easy for you, right?
[00:05:34] Laura: Right. Yeah, for me, it’s hard, because people don’t understand me. I’m trying to be steady in talking.
[00:05:41] Carole: Mostly, I understand your words and I’m so happy I do, because I know you have a lot you want to say. You said that you’re in a vocational training?
[00:05:50] Laura: Yes, DEC it is my life, my passion. I want to advocate for myself, for my community, my hometown.
[00:06:01] George: Laura was talking about working at the Disability Equity Center and that’s a community organization here. It does advocacy work for people with disabilities. Laura has been an intern there. It’s a new organization, but I think that’s been a great experience.
[00:06:17] Laura: Definitely. So I come in WINGS and learn about job site and learn about job skills. WINGS has two sites and this one is Harding.
[00:06:28] George: So WINGS is a transition program, right?
[00:06:31] Laura: Yes.
[00:06:32] George: So it’s like after high school.
[00:06:34] Laura: Yeah.
[00:06:34] George: But before whatever’s happening next, right?
[00:06:38] Laura: Right. In WINGS, I learn about different job sites, exploring other careers and jobs. So it means doing job skills and how to get around community, like take city bus and the bus maps.
[00:06:54] George: Taking the city bus.
[00:06:56] Laura: City bus.
[00:06:57] George: Yeah. Reading the bus maps, getting around the community on your own.
[00:07:02] Carole: You talked about WINGS. Is that the program after high school that you went to?
[00:07:07] Laura: Yes.
[00:07:09] Carole: What is your dream? You’re 21 years old. What do you want to do now with your life?
[00:07:14] Laura: Good question, Carole. I want to be in an apartment, because I want to move out. I think it is its time for me to get an apartment with my roommate. It’s my dream with Maya.
[00:07:25] In Harding, I’m trying different job sites and different activities. The Harding group the activities includes news, business, eating lunch of course, and every Friday now we do swimming. Tomorrow is a swimming day. So, exercise at Harding is called PE. It means fun activities, like frisbee, football and bicycle, basketball.
[00:07:56] Carole: I think that doing all that physical activity and all those sports is just the best thing. I also like doing a lot of the sports that you’ve mentioned.
[00:08:04] Laura: Carole did I tell you, actually I play basketball in Unified in high school.
[00:08:11] Carole: You were talking about unified basketball and that’s part of Special Olympics, but it’s different because you have people that have a disability and you also have players that don’t have disabilities. So it’s like a mix of people. Is that right?
[00:08:26] Laura: Yes, that’s right, yes. Kids Spirit is a summer program for the kids. doing activities like art classes.
[00:08:34] George: Activities, art classes, but you’ve been working over there doing like office assistant stuff.
[00:08:40] Laura: Yes, yeah.
[00:08:41] Carole: Tell me if I heard you right. You’re learning a lot of things about how to be in the world. All kinds of skills, right?
[00:08:47] Laura: Yeah. That’s right, yeah..
[00:08:49] Carole: So your dad told me that you speak to medical students at OHS, which is the science university, right? In Oregon?
[00:08:58] George: Oregon Health Sciences University.
[00:09:00] Laura: Doctors should know about other types. So sometimes with Down syndrome, it’s different. Some people with Down syndrome their hearts are broken.
[00:09:12] George: Sometimes people are born and their hearts are broken and then it can get fixed, like happened to you.
[00:09:18] Laura: Yes.
[00:09:19] Carole: Yeah, you had a big heart surgery when you were little, right?
[00:09:22] Laura: Yes, I have a heart defect. So if someone needs their heart fixed because I didn’t know about Down syndrome and disabilities. Medical doctors understand people with Down syndrome learn about Down syndrome, genetics, and growth.
[00:09:40] George: Down syndrome, genetics and growth. Yeah, you’re right. They need to know all of that stuff. Yeah.
[00:09:45] Carole: Who’s your favorite doctor?
[00:09:47] Laura: My favorite doctor is Dr. F.
[00:09:50] George: Dr. F is Dr. Eddie Frothingham. I think he won’t mind us giving him a shout out here.
[00:09:56] Carole: I’m curious, Laura, why do you like him so much?
[00:09:58] Laura: Because he’s great. He’s caring for me.
[00:10:01] George: You saw him since you were very, very young.
[00:10:04] Carole: So you’ve known him 22 years. That’s a long time.
[00:10:07] Laura: It is.
[00:10:09] Carole: Who is Laura?
[00:10:10] Laura: I am friendly, caring, passionate. I’m strong and I’m powerful. I am very honest. I keep track of my schedule.
[00:10:19] Carole: Yeah. You’re very organized.
[00:10:21] Laura: Yes.
[00:10:21] George: That you are. Laura is all over the calendar. Actually, she knows most of Theresa’s appointments. Theresa will ask her what her meetings are today. And so, yeah, Laura is very good on that stuff.
[00:10:32] Carole: That’s great. I could see you telling your employer, yes, I will do the job and I will do it well. I wish you good luck with all that.
[00:10:40] Laura: Thank you.
[00:10:41] Carole: And I hope you can keep me posted, see where you end up working.
[00:10:45] Laura: Yeah, I’m so glad I’m part of the podcast. I dream of being on a podcast. I’ll be a celebrity like “oh, it’s me!”
[00:10:53] Carole: I’ll be sure to tell your dad and I’ll make sure he tells you when it’s going to be on. And then you’ll have to tell me what you think.
[00:11:00] Laura: Yes also, Carole, I totally forgot so on Friday, I go to WINGS they do podcast Friday so they know about my podcast, already.
[00:11:12] Carole: Oh, great. Podcast Fridays, that sounds really interesting. Did I miss anything?
[00:11:17] George: What do you think, Laura?
[00:11:19] Laura: Yeah, I think it went great.
[00:11:22] Carole: Great. It’s complicated. You had school and then you had the after-school and then you have the CV and you have Harding. I really appreciate Laura that you explained it all to me because you know, there’s so many things out there that not everybody knows about, but you know about. I want to thank you for sharing and explaining it to me and to my audience.
[00:11:42] So, thanks. Thanks again. I can say that our interview is over. Now you can relax. You did a great job, Laura. Thank you. You’re a natural.
[00:11:52] Laura: I want to point to say, thank you daddy for doing a podcast for Carole and thank you daddy for making me a part of this.
[00:12:01] George: You’re welcome.
[00:12:01] Carole: It’s a team effort, right guys?
[00:12:02] Laura: Yes.
[00:12:03] Carole: How do you feel about it?
[00:12:06] George: I feel good. Laura? You feel good?
[00:12:08] Laura: Yes, I am, daddy.
[00:12:10] George: Yeah, I know. If Laura feels good, then I’m good.
[00:12:12] Carole: You were wonderful guests. Thank you both so much.
[00:12:14] George: Thanks, Carole. We’ll talk to you soon. Bye.
[00:12:19] Laura: Bye.
[00:12:24] Carole: Laura mentioned that her favorite book is The Shape of the Eye, the memoir written by her father, which tells the story of Laura when she was young. And it won the 2012 Oregon Book Award in creative nonfiction. Links to that book and other places and organizations that Laura mentioned can be found in the show notes.
[00:12:47] Join me in two weeks for chapter two of this series, where you will hear George discuss his memoir, The Shape of the Eye, which is a fascinating look into the unexpected and unfamiliar world he found himself in when Laura was born. He poetically shares his thoughts, his story, which he kept reminding me was only his story and no one else’s. Everyone, whether with a disability or not has their unique story and how important it is for us to catch ourselves when we label and think in stereotypes, instead of searching for that unique human being in front of us.
[00:13:25] 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, I would’ve sworn up and down, it’s intellectual achievement, what level of education you get to, college, whatever, it doesn’t matter. And I believe that. But, still to have a child where you have to reconfigure those expectations, it’s like, okay, well maybe I’m not as pure in my expectations as I thought.
[00:14:00] Carole: Chapter three or the third episode, we will hear George speak about his other book called Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves. It was named the Best Science Book of 2019 by NPR Science Friday, and was a finalist for the Oregon Book Award. George’s website describes how Fables and Futures shows how each new application of biotechnology is accompanied by a persuasive story, one that minimizes downsides and promises enormous benefits. You don’t want to miss these conversations with George. Trust me.
[00:14:41] 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.
[00:14:53] 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.
In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh’s stepmother, Julie Burch, and learn how they inspired and learned from each other, and how their relationship has changed over time. Some learning gems from this episode: Don’t pet a guide dog, (he or she needs to focus on guiding). Once out of harness, you can pet the dog; iPhones have an option called “VoiceOver” which anyone can use; If you meet a blind person, don’t assume they need help, ask first; Do not spoon-feed or coddle people who are blind, they are like sighted people and just need more assistance; Support groups are great like Lighthouses for the Blind; Encourage independence and build confidence; Good manners, awareness of posture and exercise matters; Tough love sometimes requires patience but it beats sympathy.
FIND AND FOLLOW JOSH:
FIND AND FOLLOW JULIE:
Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh to spatially map his environment, and talks about the how the brain’s map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing “failure,” using tough love to support independence, and enhancing the senses through mindful practice. In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.
FIND AND FOLLOW JULIE
Julie’s Mindfulness Art Facebook Page
Julie’s Author Facebook page
Julie’s Author Website
Subscribe to Julie’s mailing list for information about upcoming books, nature, recipes, and life with Josh.
In this episode Jillian and Audrey, mother and daughter, share their perspectives about dwarfism and offer helpful advice and wisdom along the way. They speak about topics ranging from the “sport” of dwarf-tossing to some very enlightening and evolved perspectives on disability, advocacy, decision-making, overcoming challenges, and thriving in a world that does not make it easy to live without being stared at and photographed without consent. Dwarfism is relatively rare so most of us have never met a little person. In this episode, you will gain a new appreciation for the challenges, gifts, and wisdom of one little person and her mom.
Recent Dinklage/Disney Statements onSnow White and the Seven Dwarfs
Far from the Tree: Parents, Children and the Search for Identity by Andrew Solomon
Thinking Big: The Story of a Young Dwarf , by Susan Kuklin
The Missing Piece by Shel Silverstein– (animated)
The Cracked Pot Children’s Story
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
Judy Heumann, Lifelong Advocate for the rights of disabled people
FOLLOW AND CONTACT JILLIAN
Jillian Curwin, an advocate for dwarfism and disability awareness, is the host of the podcast, “Always Looking Up.” She was born with achondroplasia—a form of dwarfism. On the previous episode of Wisdom Shared, I spoke with her mother, Audrey. You can listen to that episode here: https://wisdom-shared.simplecast.com/episodes/audrey. In this episode, Jillian talks about what it’s like navigating this world that is primarily designed for average height people when she herself is a little person. Her commentary on films and TV is eye-opening as she shares her frustrations, solutions, and creative visions. All these ideas can go a long way toward accessibility and inclusion, if we as a society change our own perspectives and see life from other points of view. I learned a lot from speaking with Jillian for this episode, and from speaking with her mom Audrey in my last episode. Most of us take our average height for granted. Jillian helps expand our understanding with humor, intelligence, and most of all, first-hand experience as a little person.
FROM THIS EPISODE
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means “without cartilage formation.” https://medlineplus.gov/genetics/condition/achondroplasia/
Jillian’s Disney Project (includes photos)
Thinking Big: The Story of a Young Dwarf Children’s Book
Little People, Big World TV Show
Nancy Volpe Beringer: Fashion Design for Sustainability and Adaptability
Little People of America
American Association of People with Disabilities
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
Maria Town, American Association of People with Disabilities, President and CEO
Wigs and Wishes
FOLLOW AND CONTACT JILLIAN
Audrey Curwin is the mother of two adult children, Jillian and Benjamin. Audrey was the Assistant Prosecutor in Gloucester County, New Jersey, supervising the domestic violence and sexual assault unit until her retirement in 2006. She was married for 23 years to Michael Curwin, and together, they were the only husband and wife team of first assistant prosecutors in New Jersey. Audrey does not shy away from calling out what she considers unacceptable attitudes and common preconceptions. She delves into her experience of raising her eldest child, Jillian, who was born with achondroplasia, which is a form of dwarfism. Audrey, her late husband, Michael and their son, Ben were all born average height. Jillian’s diagnosis brought with it a lot of unknowns and fears, and opened a window into the world of labels, accessibility, advocacy, alternate perspectives, and unique challenges. Michael and Audrey were always deeply committed to the idea that Jillian should not be defined by her stature, disability, or diagnosis, but by who she was as a human being Today, Jillian is a strong, witty, intelligent, fashionable, creative advocate. She is host of the podcast, “Always Looking Up.” In this episode, we will hear from Audrey how words matter, the many ways that the entertainment industry has marginalized little people, and how people diagnosed with dwarfism are often left out of the accessibility formula.
FROM THIS EPISODE
Osteogenesis imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth. It is also known as brittle bone disease.
Skeletal dysplasia is the medical term for a group of about 400 conditions that affect bone development, neurological function, and cartilage growth, including its most common form, achondroplasia.
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means “without cartilage formation.” https://medlineplus.gov/genetics/condition/achondroplasia/
Little People of America
The Missing Piece – Animated Shel Silverstein:
The Cracked Pot Children’s Story
Crip Camp: The Film
Crip Camp: The Revolution
In this episode, I had the privilege of speaking with Simon Ratcliffe—a former advertising executive, husband, father, and podcaster who lives in the UK with his wife and their three children. His podcast, “Turning the Tables,” offers candid and inspiring stories from people who have turned adversity into advantage. It was born out of Simon’s own life experiences, including a severely debilitating bout of Chronic Fatigue Syndrome, and his desire to help listeners find new purpose and fulfillment in life. Simon shares about life as a successful businessman and about parenting his 20-year-old daughter Francesca who was diagnosed at age three with Dravet syndrome. Since then, Francesca has taught him so much—from how greeting people with warmth opens the heart, to how unconventional approaches can lead to amazing outcomes. And his own bout and recovery from Chronic Fatigue has given him tremendous insight into—and compassion for—the experience of adversity and the possibility for transformation that it unlocks. I ran into some adversity myself when I had to rely on the backup audio when putting together this episode. Sometimes wisdom can be found amidst the messy reality. That’s certainly true for this episode, because this story was meant to be told.
RESOURCES MENTIONED IN THIS EPISODE
Dravet Syndrome (aka “severe myoclonic epilepsy of infancy”)
Chronic Fatigue Recovery Program: ANS Rewire
Simon’s Podcast: Turning the Tables
SIMON’S RECOMMENDED BOOKS
A New Earth by Ekhart Tolle
The Surrender Experiment by Michael A Singer
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 9, Simon Ratcliffe, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
It isn’t a straight line to recovery from Chronic Fatigue Syndrome
We’re in the middle of COVID right now. There are many people experiencing very different symptoms and no one has the answer.
To get through a chronic illness, you have to completely reframe what the idea of recovery is.
It takes a long time for your brain to recondition itself or retrain itself around positive thoughts.
Every time I had a negative thought, I would reframe it in my head.
It was clear that a developmental delay would mean that she would need in a special school.
Lot of kids with conditions have a lot of potential, but because of the resources needed to bring that out in a child, they end up settling for good average.
Education is more geared around helping with independence, which is fine, but a lot of children like Francesca will not be able to live an independent life.
People with special needs, need to be categorized as important as any other diverse group.
Recognize that the situation you are in, if you have a child with special needs, puts much greater pressure on you.
We need to see individuals not labels.
It took the chronic fatigue to enable me to completely re reboot my mental state, my life, my priorities, my thinking.
Why don’t we live life with rose-tinted spectacles on? Why is it a good idea to be painfully realistic about everything?
In Episode 8 of Wisdom Shared, I sit down with my friend, Rosemary Bushey, and her 15-year-old daughter Lauren who was diagnosed with a mental illness in 2018. Signs and symptoms appeared much earlier but Rosemary and her husband assumed it was typical teenage defiance. It was only after witnessing a decline in grades, unusual behaviors and what they refer to as The Crisis that led to Lauren’s hospitalization, that they finally received a diagnosis of Obsessive-Compulsive Disorder (OCD). A staunch advocate for her daughter and removing the stigma around mental illness, Rosemary is currently getting her master’s in Clinical Mental Health Counseling. In this episode, she shares some of the behaviors and activities Lauren engaged in, how the family responded, her guilt over not recognizing the patterns sooner, and how she and other parents can advocate for their children and take care of themselves. Lauren speaks openly about what it’s like to be diagnosed with OCD, and she offers up her wisdom to other kids and parents and emphasizes how important it is to talk about what’s going on and not to be ashamed.
Rosemary Bushey currently lives in New Hampshire with her husband and two daughters, Lauren 16 and Amelia 13. She is a 49-year-old runner, coach, and vegan Instagram influencer. Rosemary was born in Columbia, South America and has lived in New York for most of her life. She is currently completing a master’s degree to work as a bilingual Clinical Mental Health Counselor. She is pursuing this degree because her older daughter was diagnosed with Obsessive-Compulsive Disorder (OCD) at age 14. Rosemary has always been passionate about food, fitness, and the body/mind connection. Two years ago, she adopted a vegan lifestyle, and is avidly exploring the connection between mental health and nutrition. She shares vegan recipes and gorgeous photos of the food she has prepared on her Instagram page, @simplyveggielicious. Lauren loves to write, draw, and sing.
Song credit: “idontwannabeyouanymore” by Billie Eilish, sung by Lauren Bushey
RESOURCES MENTIONED IN THIS EPISODE
International OCD Foundation
HOUSING FOR FAMILIES
Ronald McDonald House
Cognitive Behavioral Therapy
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 8, Rosemary Bushey, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.
QUOTES FROM LAUREN:
I always struggled with my OCD, so I always knew something was wrong, but it was so normal for me that I was kind of used to it
OCD feeds off of stress. So whenever I’m stressed out about something, the OCD just gets much worse.
I always had urges to ritualize. And when I felt uncomfortable, I’d have to fix things a certain way.
I had these fears of my family dying. If I didn’t move something a certain way in my room, I couldn’t leave my room until I fixed everything a certain way, which took a while.
For the kids that are struggling with this, you know, trust your parents, they’re trying to help you
You have to help yourself and you have to work towards bettering yourself and you can’t give up.
Stop refusing to take other people’s help. I was refusing to take my medicine because I was too scared. Even the smallest steps can make such a big difference. You have to think of the future you want for yourself. You have to think about how it’s going to help you in the end. It might hurt now, but push yourself.
It gives you more power over your mental illness by feeling free to talk about it with other people, like to be able to learn about it and inform others about it, and really just know everything about what you’re going through.
I feel like the foods that are in the vegan cuisine are much better for your mental health.
QUOTES FROM ROSEMARY:
When she was diagnosed with OCD, I had to jump through so many hoops in order to find help.
A lot of her OCD started manifesting in the way her shoes needed to be in certain way.
We had no clue that we were dealing with OCD… it was exhausting.
She would come home and do homework for hours and hours in a way that wasn’t normal. She kept erasing. If a letter wasn’t completely perfect, she had to erase it and do it again.
I kept seeing the compulsions but I didn’t see the obsessions. The obsessions were hidden.
As parents, the most difficult thing we had to deal with was feeling guilty. The feeling of guilt because I kept saying, “Oh my God, how could I ignore the signs?” I knew they were there, but she was functional. And all her doctors said, “there’s no way you could have known. There’s no way anybody could have known she had OCD,” but I kept blaming myself and saying, “Oh my God, I wish I would have found help before.”
She was looking for me to repeat the same phrase in the same tone of voice exactly the same way I said it before. There were times that she needed to repeat or make me repeat things three times or five times.
There was no way anybody could communicate with her. There was no conversation, no communication.
She couldn’t dress herself. She couldn’t choose what to put on. She was overwhelmed by choosing what to wear. And then it got to a point where she couldn’t help herself dress. She would be very stiff and we would have to dress her, but she couldn’t help. She would scream and get into a panic and anxiety because she wanted her pants put on a certain way. But she couldn’t move her legs. She had to be stiff. It was extremely weird, bizarre behavior. Then she couldn’t brush her teeth because she wasn’t supposed to move her arm.
For Hispanic people, it is a huge stigma mental illness. They don’t talk about mental illness. In this country too, there’s a lot of stigma related to mental illness.
Last year, I put her basically on a plant-based diet and its helping her and she feels better. She feels good about what she’s putting in her body.
She is so mature and so knowledgeable about her disorder. It really makes me proud.
My beliefs were aligned with my nutrition, with my choices.
As a parent, and I could say to any parent, we are the best advocates for our children.
Just knowing other parents are going through the same or similar situations can be very comforting and can help a lot.
Beril Tokcan was a designer in Italy before moving back to Turkey to raise her family. Sooner than expected, she gave birth to twins, Emre and Denise. They spent the first five weeks in the neonatal intensive care unit while Beril, a single mother, traveled back and forth from her home multiple times a day to be with them. And when at 13 months Emre was diagnosed with Cerebral Palsy and she told by two doctors that he would never walk or talk, Beril decided to take matters into her own hands.
The one method she intuitively felt would allow Emre to reach his potential, The Anat Baniel Method of Neuromovement, was not available in Turkey so she traveled to Canada. After seeing profound changes in her son, she decided to become a certified ABMN practitioner. Once Beril was certified, she returned to Turkey and opened up a clinic in Istanbul. Practitioners come from all over the world to work in her clinic, helping families from all over Turkey.
Beril is one of the most determined, passionate, honest, and articulate women I have ever met.She describes how she guided Emre’s teachers to give her son agency. She insisted that Emre learn to stand up for himself when bullied; to follow his passions; and to believe in himself. He recently earned his brown belt in judo. Beril wrote a book (soon to be published in the United States) called “I Am Free Now,” something Emre said while in Barnes and Noble after receiving an ABMN lesson.
ABOUT BERIL TOKCAN
After studying graphic design in Milan and visual communication in Sydney respectively, Beril Tokcan returned to her homeland Turkey in 2003 and founded her design studio in Istanbul.
She came across the Anat Baniel Method® NeuroMovement (ABMNM) in 2012, while in search for a method to help her son, who was diagnosed with PVL /CP due to premature birth.
She completed the ABMNM Professional Training in 2015 and consecutively all the ABMNM Mastery Programs (for Children with Special Needs, for Vitality and Anti-Aging, and for High Performers). She also completed Kids Yoga, Yoga Therapy and Jeremy Krauss Approach trainings and participates in the ABMNM Professional Trainings as an assistant.
She works with children and adults at her practise in Istanbul, offering private lessons, group classes and workshops, with the mission of transforming the impossible into possibie and making positive changes in people’s lives.
Beril is the author of ‘I Am Free Now’.
(list compiled by Beril)
Awareness Through Movement, Moshe Feldenkrais
Hardwiring Happiness, Rick Hanson
Hold Onto Your Kids, Dr.Gordon Neufold & Dr.Gabor Maté
Kids Beyond Limits, Anat Baniel
Move Into Lİfe, Anat Baniel
Parenting from the Inside Out, Daniel Siegel and Mary Hartzell
Positive Discipline for Children with Special Needs, Jane Elsen, Steven Foster & Arlene Raphael
Rising Strong, Brené Brown
Soft Wired, Michael Merzenich
The Brain That Changes Itself, Norman Doidge
The Brain’s Way of Healing, Norman Doidge
The Whole Brain Child, Daniel Siege and Tina Payne Bryson
Train Your Mind, Change Your Brain, Sharon Begley
Trauma-Proofing Your Kids, Peter A.Levine, Maggie Kline
Overlook Hospital, Summit NJ
Dr.Joseph C. D’Amico
Facebook Group: SPML – Selective Percutaneous Myofascial Lengthening
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 7, Beril Tokcan, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
You have all these dreams about what’s next in your life.. … suddenly it’s all washed away and you’re left with a big unknown.
The gap was getting larger and larger every day. Our doctors kept telling me …. “They were born prematurely. We should wait a little more.”
There’s that motherly instinct saying, “something is wrong,” but you’re hoping it’s all fine because the doctor is saying it’s all fine.
There should be a more humane way to connect with him and see where he’s at and to help him get to the next step, not go 50 steps ahead. I had no idea what it could be, but I knew there should be a way so that’s when I started doing my research,
I had no idea how much movement has influence on the brain’s potential to learn and change it.
It [ABMN] works in different ways with each child because each brain is unique.
I was feeling very alone and isolated. I thought no one got what I was going through. I built these big walls around me and I just wanted to be inside with the two kids I just didn’t want to have anything to do with the outside world.
I started to see a psychologist. And one of the things that she told me really struck me. She said, “You have to put the oxygen mask to yourself first,” which I found out to be very true.
I said out loud that I have a child with special needs. And that was the breaking point for me because before that, you know, of course I have a special needs child, but I couldn’t verbalize it.
The ABM training was wonderful because you could look into each other’s eye and understand each other and feel each other without, without needing for words, it was such a safe place to be.
I went to the [ABMN] training to learn the tools to help my son and other children, but I had no idea how much it would change me as a person.
We need to see where the child is and offer different ways for him to figure out how to get to the next step.
He’s a child with confidence and determination and motivation because he figured things out for himself. And by me slowing down and by me connecting with him and by me giving him the space, he figured things out.
At one point he left his walker and started taking steps. And there was more fluidity in his walk and he opened up his arms and he said, “I’m free now.”
When he was diagnosed, we went to see a couple of neurologists and all of them basically gave similar answers of what he will never be able to do in life.
How come they can speak so firmly about things that my son will never be able to do in life? He’s only one year old. It’s just that motherly instinct saying, I’m going to do everything in my power to help him improve his potential.
Sports has been a part of our journey, a big part of our journey because that’s where he likes to challenge himself and wants to play together with his friends. And I see that as the best therapy.
Trust your intuition in whichever path you want to take. And do a lot of research. Not everything will be useful for your child, but find your own rhythm and pace and what works for you. Don’t wait for answers to come to you.
No one has a magic wand. It’s a long process and it can be hard. But it can also be joyful and fun. Just embrace it all and take care of yourself. I wish I had started taking care of myself and helping me heal earlier.
Find parents that are going through similar journey and process because you do need someone to walk this path with.
I don’t believe in labels and I don’t think we need words like special or unique or extraordinary. I think each child is unique and special and extraordinary….. By labeling them, you’re pushing them outside of the circle.
Be open enough to listen, but then listen to your intuition and let that be the guide in your decision-making process.
The most important thing is that the child can learn and if they can learn, they can always learn more.
Jill Bolte Taylor, a Harvard trained neuroanatomist, experienced a major left sided stroke in 1996. In this episode, she tells her story of resilience, perseverance, and the power of the connection and attention her mother bestowed on her. She gives us insight into her eight years of being differently abled, her inability to communicate like everyone else around her, and her feelings of vulnerability and vitality. Jill asks us to question the concept of “normal” and believes that to look at (and celebrate!) one’s abilities is powerful and essential. She speaks to all parents, healthcare workers and educators. Dr. Taylor is Author of “My Stroke of Insight,” and “Whole Brain Living,” and one of Time Magazine’s 100 Most Influential People in the World for 2008. She is the Founder of Jill Bolte Taylor BRAINS, Inc, a not for profit organization.
You can follow Dr. Jill on Twitter
Visit Dr. Jill Bolte Taylor’s website
Dr. Jill’s Ted Talk, “My Stroke of Insight”
The Harvard Brain Bank
Fifty Trillion Molecular Geniuses Musical Composition
Cecelia Chorus of NY commissioned The Brothers Balliett for a musical composition, Fifty Trillion Molecular Geniuses, with texts drawn from Dr. Jill Bolte Taylor’s book and TED Talk My Stroke of Insight. The piece was performed at Carnegie Hall on Dr. Jill’s 60th birthday.
Read more: https://ceciliachorusny.org/updates-contact/brad-doug-balliett-composing-fifty-trillion-molecular-geniuses
Moshe Feldenkrais and The Feldenkrais Method®
The Feldenkrais Method® of somatic education was developed by Dr. Moshe Feldenkrais. It is a powerful approach to improving life that uses gentle, mindful movement to bring new awareness and possibility into every aspect. The Feldenkrais Method is based on principles of physics, biomechanics, and an empirical understanding of learning and human development.Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities. Read more: https://feldenkrais.com
Anat Baniel and NeuroMovement®
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from 30+ years of experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.
The Nine Essentials
Essential 1 – Movement with Attention; Wake up to Life
Essential 2 – Slow; Luxuriate in the Richness of Feeling
Essential 3 – Variation; Enjoy Abundant Possibilities
Essential 4 – Subtlety; Experience the Power of Gentleness
Essential 5 – Enthusiasm; Turn the Small into the Great
Essential 6 – Flexible Goals; Make the Impossible Possible
Essential 7 – The Learning Switch; Bring in the New
Essential 8 – Imagination & Dreams; Create your Life
Essential 9 – Awareness; Thrive with True Knowledge
Read more about the Nine Essentials:
My Stroke of Insight by Dr. Jill Bolte Taylor
Whole Brain Living by Dr. Jill Bolte Taylor (Available May 2021, published by Hay House)
The Feldenkrais Method by Staffan Elgelid, Chrish Kresge, with forward by Jerry Karzen, this book includes perspective from 26 leaders and experts in the Feldenkrais field. It explains the importance of learning through movement with the brain’s attention as a means for physical and cognitive improvement and transformation. (Available May, 2021, published by Handspring.) Pre-order at feldenkraismovementbook.com to receive 10% off and free shipping in the US/UK.
Awareness Through Movement by Moshe Feldenkrais
The Potent Self by Moshe Feldenkrais
Kids Beyond Limits by Anat Baniel
Notable Quotes from This Episode
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 6, Dr. Jill Bolte Taylor, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
“How does our brain create our perception of reality?”
“I could not walk, talk, read, write, or recall any of my life. I became a complete infant in a woman’s body. I was minutes from death.”
“I knew nothing. I had no information in my left brain… I had no perception of my past. I was isolated completely in the present moment. It took eight years to recover all function of my left brain.”
“I was nothing but a breathing body in a bed. That’s how my mother described me.”
“I don’t use the term “victim” because I survived that day. I prefer that instead of calling people stroke victims—the victims died, the survivors survive—I encourage people to call us stroke survivors. It makes a difference. Words have power.”
“If you’re going to be a good teacher, you have to go to the level of the student.”
“When I experienced the stroke, I had incredible right brain ability. I was completely turned on to body language, physical language—all kinds of gifts of the right brain—far beyond the normal person. I could tell in an instant if someone was telling the truth or telling a lie, because the cells that could distract me from being able to tell that someone was telling a lie were turned off.”
“I was very blessed. And this is one of the greatest gifts Gigi gave me. From day to day, I couldn’t remember yesterday or the day before because all I had was the present moment. She kept reminding me of what I couldn’t do yesterday. She was enthusiastic about my ability to get better.”
“Every step is a celebration. I had to stay focused on what I could do, not on what I couldn’t do. So much of our society focuses on the disability. Let’s focus on and enthusiastically say YAY to what’s working, and then ‘what’s the next thing I can learn?'”
“What does it mean to ‘Man Up’? It actually means to stand down, take a good look at the situation, and stand from a platform of humbleness. Stand from a platform where strength comes from saying, I actually don’t know it all. Maybe I had to have a special needs daughter to understand all of that.” —Damas Manderson In this fifth episode of Wisdom Shared, we hear from a New Zealand father, husband and entrepreneur who gave up his career, country, and everything he knew for the opportunity to help his daughter and sustain his family. Damas Manderson’s daughter, now 17, was diagnosed at an early age with Cri du Chat (also known as 5p- syndrome), a rare genetic disorder. In this interview, Damas opens up about what he has learned while raising Kennedy Rose, whose condition includes a range of developmental challenges including autism, severe ADHD, aggressive behavior, lax ligaments, seizures, heart issues, and the possibility of sudden death. Damas describes his journey with conventional and unconventional therapies, navigating well-intended advice, religion and spirituality, and the power of vulnerability and kindness. His story is one of perseverance, hope, compassion, and love. All parents, healthcare professionals and teachers can learn from this father who shares his wisdom so generously.
FOR MORE INFORMATION:
The 5P- Society (Cri du Chat)
Cri du Chat Society Facebook Page
National Organization for Rare Disorders
QUOTES FROM THIS EPISODE:
You are welcome you to share the wisdom from this episode. Please be sure to credit: “Ep. 5, Damas Manderson, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
22:30 “When you’re hurt, you hurt others”
30:59 “If empathy was the first point of reference for people, that would go a long way”
39:07 – “A handful of special needs parents can fall into the category of where the normal children become caregivers whether they want it or not.”
44:00: “What does it cost me? It’s only cost me money. What have I gained? A loving wholesome family, with a value that we will carry forever. My family is my legacy.”
50:00 “There’s not an instruction book for how to be an effective special needs mother and father or husband and wife.”
51: “Kindness doesn’t mean weakness. Kindness means strength.”
Damas and Dina Manderson intend to start a foundation for their daughter, Kennedy Rose. These episode notes will be updated to include foundation information when it is available. (1/9/2021)
Paria Hassouri admits to being blindsided when the child she gave birth to and called her son announced at 13 1/2 years old that she identified as a girl and wanted to be recognized and acknowledged as her mother’s daughter. In this episode, we explore the topic of gender identity and a parent’s journey from doubt to acceptance. Paria opens up about her personal transformation and how she learned who her daughter is from the inside out, realizing that the way forward is not to judge, but to listen; not to try and fix, but to connect and love.
Eleven years ago Mara Yale’s daughter, Mia, had a stroke at birth. In this episode, we hear how Mara’s research, advocacy, self-education, and curiosity informed her approach to parenting and contributed to her daughter’s remarkable recovery. Mara shares considerations that apply across the board for all kids, regardless of age, diagnosis, severity of injury, or track in development as well as information on both the unconventional and conventional therapies she chose for Mia.
ABOUT MARA YALE
ABOUT REGAME-VR LAB AT NORTHEASTERN UNIVERSITY
Research in the Rehabilitation Games and Virtual Reality Laboratory at Northeastern University focuses on the sustainable, evidence-based integration of virtual reality (VR) and active video games into rehabilitation practice for children with neuromotor impairments such as cerebral palsy.
Audio from ReGame-VR lab interviews produced by Benjamin Bertsch and Adam Fischer.
LINKS FROM INTERVIEW
I-ACQUIRE clinical trial for constraint induced movement therapy: www.clinicaltrials.gov/ct2/show/NCT03910075
Cerebral Palsy Soccer: www.cpsoccer.us
Hand in Hand Parenting: www.handinhandparenting.org
The Reading Promise: www.makeareadingpromise.com
Dr. Karen Pape: www.karenpapemd.com
Children’s Hemiplegia and Stroke Association (CHASA): www.chasa.org
International Alliance for Pediatric Stroke: www.iapediatricstroke.org
Sheryl Field, Field Center for Integrated Development: www.thefieldcenter.org
Somatic Experiencing: www.traumahealing.org/about-us
In this episode, Claude Winn shares her journey raising her twenty-year-old daughter, Maya, who was diagnosed at an early age as being on the autism spectrum. Claude talks about learning how best to support her extraordinary child; her explorations into alternative therapies; the advocacy needed to ensure Maya’s right to participate in activities available to so-called typical students; and the importance of trusting and caring for herself all throughout the process.
About Claude Winn
How Far I’ll Go
written by Auliʻi Cravalho
© 2016 Walt Disney Records
LINKS FROM THE INTERVIEW
Anne Pratt, from Indianapolis, Indiana is an ABM practitioner and scientist whose 4 year-old son Charlie was diagnosed with cerebral palsy when he was 7 months old. Anne describes her experience with traditional and non-traditional approaches to Charlie’s individual needs, the challenges that her family faced, and how they found their current team of doctors, therapists, and support network. Anne also talks about her ongoing advocacy for Charlie, her own self-care, and offers wisdom to families with unique children. Her point of view is inspiring, informative, and deeply moving.
ABOUT ANNE PRATT
LINKS FROM INTERVIEW
Tools & Equipment
Defining the Body
The corpus callosum is the primary commissural region of the brain consisting of white matter tracts that connect the left and right cerebral hemispheres. https://www.ncbi.nlm.nih.gov/books/NBK448209/