EP. 56: SEEING THROUGH DISABILITY

Apr 5

WITH DASHIELL MEIER

A disability advocate with Down Syndrome talks about what he wished others knew about this condition and how we can create more inclusive spaces for those with disabilities.

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Episode Summary

Approximately 1 in 700 babies in the United States are born with Down Syndrome. Yet, despite how common this condition is for people, we don’t often have the chance to hear their stories. In this episode, we are joined by Dashiell Meier, a young aspiring filmmaker and disability advocate who has Down Syndrome. Over the course of our conversation, we have the wonderful opportunity to explore how Dashiell sees the world as he reflects upon the stereotypes that society holds against people with disabilities, discusses what makes his favorite doctors stand out, shares his passion for storytelling, and offers advice to clinicians on how to better connect with patients who have disabilities.

19-year-old Dashiell has big dreams of being a filmmaker, entertainer, disabilities advocate and artist — all while owning a vegetarian restaurant and working for Pixar. Currently, Dashiell attends high school where his favorite subject is “all of them” and is the only person with Down syndrome to host his own talk show (as far as we know…).
In this episode, you will hear about:
• How Dashiell currently helps Stanford medical students learn to communicate with patients with disabilities - 1:47
• Dashiell’s academic interests and career aspirations in the entertainment world - 3:22
• Dashiell’s interactions with doctors and what makes his favorites stand out - 5:22
• A discussion of the stereotypes that people with Down Syndrome face - 7:42
• What Dashiell wishes people knew about Down Syndrome - 11:00
• The movement for people with disabilities that Dashiell is spearheading, and what he hopes to achieve through it - 19:10
• Advice on building good relationships with people who have disabilities - 27:00
• The projects Dashiell intends to create as a filmmaker - 32:04
• How to develop greater empathy for people with disabilities - 34:46
• Advice to new clinicians and trainees on how best to interact with patients with disabilities - 37:10
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to the Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and health care executives, those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] About one in every 700 babies in the United States are born with Down syndrome. Yet despite how common this condition is, we don't often get the chance to hear their stories. In this episode, we are joined by Dashiell Meier, a young aspiring filmmaker who has Down syndrome. Over the course of our conversation, we have the wonderful opportunity to explore how Dashiell sees the world as he reflects upon the stereotypes society holds of those with Down Syndrome, discusses what makes his favorite doctors stand out, shares his passion for storytelling, and offers advice for clinicians about how to better connect with patients with disabilities. But first, Tyler, will you tell us how you first met Dashiell?
Tyler Johnson: [00:01:46] One of my main roles at the medical school is that I teach the medical students, and in particular I'm what's called an FRC faculty member, which means that basically everything except for the really hard science stuff pathophysiology and pharmacology and all the rest. I'm one of the core faculty members who teaches the medical students that and one of the things that we do with that is that we teach them interviewing skills and physical exam skills. And a few weeks ago we had a session where we had some standardized patients and some actual patients who came and joined us in the classrooms there. And then we were talking to the medical students and teaching the medical students some important things about interviewing techniques and whatnot. And so as part of that day, Dashiell was there, and I ended up at the table with Dashiell. He was the person that I worked with as the medical students interviewed him over the course of the day, and I was alternately impressed and struck and touched by the things that Dashiell shared with the students and sometimes shared with me over the course of the afternoon. And so at the end of that time, I asked him if he would be willing to join us on the podcast. And so we're here in our living room today. And first of all, Dashiell, we just want to welcome you and thank you for joining us on the show.
Dashiell Meier: [00:03:01] Thanks for inviting me. It's such a great, great honor. Thank you for having me on.
Tyler Johnson: [00:03:09] You are very welcome. Well, Dashiell, can you first just tell us a little bit about yourself? Tell us who you are and what are some of the things that you fill your days with.
Dashiell Meier: [00:03:20] Sure. Thanks for asking. As you mentioned before, I'm Dashiell Meyer. I'm 19 years old and I'm a senior in high school. I love school. I love to learn in my free time. I like to make movies. I'm chasing a film career and hopeful to work at Pixar. That's my dream.
Tyler Johnson: [00:03:49] Any Pixar employees out there? Listen up. Okay.
Dashiell Meier: [00:03:54] Yes. And I do have a few jobs I want to do in mind. I want to be a storyboard artist. I want to be a voice actor and a director. Those are my three mains.
Tyler Johnson: [00:04:09] Those are awesome. Tell us a little bit- You mentioned that you love learning and you go to school. Tell us a little bit about what school is like. What what are your favorite subjects? What are your favorite things to study there?
Dashiell Meier: [00:04:21] I love to learn and I just love all my subjects. I would say one of my tops is design engineering because it's project based learning where I get to learn how to solve problems through making things with my hands. And so far, I made a functional water fountain.
Tyler Johnson: [00:04:56] Wow.
Dashiell Meier: [00:04:57] I know. Pretty impressive. I know.
Tyler Johnson: [00:04:59] I'm impressed.
Dashiell Meier: [00:05:00] I made a laptop bag.
Tyler Johnson: [00:05:03] Cool.
Dashiell Meier: [00:05:04] And I most recently made a pop up book.
Tyler Johnson: [00:05:08] Wow. What was your pop up book about?
Dashiell Meier: [00:05:10] I'm a huge Disney buff. If you know Frozen 2. It was my take on Frozen 2.
Tyler Johnson: [00:05:19] That's awesome. So, you know, Dashiell, one of the reasons that you were there the other day is because the people who run this medical school class were hoping that you could help the students learn how to be better doctors. And so I was hoping that, first off, you could talk to us a little bit about what have been some of your experience with doctors, some of your experiences with doctors over your life? Like, why have you seen doctors and what have those what of some of those visits been like?
Dashiell Meier: [00:05:53] Overall, my all my doctor experience is actually pretty good. Like they treat me with respect for someone with Down syndrome. They actually respect me. They don't care about the stereotypes about Down syndrome. And they're great people to talk to when I have a medical issue and it's really fun, fun to chat with I mean, they're great people just like you. Yeah.
Tyler Johnson: [00:06:30] Thank you.
Dashiell Meier: [00:06:31] And. Mainly in my experience, has been pretty uplifting, I would say.
Tyler Johnson: [00:06:40] I'm really glad to hear that. Can can you talk to us a little bit about maybe tell us about of all the doctors that you've seen over your life, who's one of your favorite doctors and what was it that made that doctor stand out to you?
Dashiell Meier: [00:06:56] I have many doctors. I would say one of my doctors, he always welcomes me with a big smile and he treats me the age I am. And. And he would talk to me directly instead of my mom. And when he does talk to my mom, he asks for my permission beforehand.
Tyler Johnson: [00:07:29] Yeah.
Dashiell Meier: [00:07:30] And which is great. And that's one of the main things of why I like in a good doctor.
Tyler Johnson: [00:07:39] Yeah, there were a couple of things that you said actually in in that answer that I wanted to dig down a little bit more on. So the first is you mentioned that he talks to you in a way that's appropriate for your age. Why does that stick out to you or why has that become something that's important to you?
Dashiell Meier: [00:08:01] Because of the stereotypes with people with Down syndrome, there's a stereotype that people, with doctors, that they don't see the person as a person they see them as their disability the which is not good in Society. Yeah. Because of Other stereotypes of Down syndrome. For most of our lives, we've been treated like animals.
Tyler Johnson: [00:08:46] I recognize that what we're talking about right now is kind of sensitive territory. And if I ask a question or I ask a question in a way that makes you feel uncomfortable, please just say that. But I'm really struck by the fact that you are mentioning that there are times when you have felt like people or even some of your doctors, when they see you instead of seeing you, as you put it, they see your disability. I know that you can't see the world from behind their eyes, so to speak, but can you talk a little bit about if you perceive that someone is seeing you and instead of seeing you, is really seeing your disability, what do you think they see when they see your disability instead of seeing you.
Dashiell Meier: [00:09:36] Instead of seeing me, they see Down syndrome. They see in public views of Down syndrome they see what's wrong with Down's syndrome. They see Down's syndrome as something that needs to be fixed and cured and that they want to find a way to get rid of it. But it's a permanent disability. And and I know I have done myself and. I. I love my disability. You you take take away my disability, You take away my identity. Down's syndrome is not something that that people can get rid of. It's something that needs to be understood. And by by understanding that Down syndrome is a good thing. We can have live in a more inclusive society.
Henry Bair: [00:10:58] Thanks, Dashiell, for sharing your perspectives. I'd love to hear more about that. You know, earlier you talked about how you wished more people would come to know who you are, what Down syndrome really is, and what it means to you. You know, it's an unfortunate truth that in most of our lives, we don't get the chance to speak in depth with someone living with Down syndrome. So for all of our listeners out there, both those who are and who are not in the health care profession, can you tell us what are some things you wished they knew about Down syndrome? What are some misconceptions or some things they might not be aware of?
Dashiell Meier: [00:11:36] Thanks for asking. Thank you. What doctors need to know is that the difference between the medical model and the social model of disability. The medical model of disability states that the person needs to be fixed and cured. And the social model states it's not the person with Down's syndrome that needs to be fixed, it's the society that needs to change their views on Down's syndrome. Those are the two different models of disability. And don't just tell someone with Down syndrome that they need to treat their symptoms. Not just tell me it's because I have Down syndrome. Because it might be. It also might not be. So it'll be helpful if they do research about it and say something like, I want to look into that more or I don't have the answer right now, but I want to find out. So that is a legitimate answer. Because my mom, she- And this brings up a good story that actually happened to me when I was younger, I couldn't hear. Because I had tumors in my ears, but the doctors were like, no, he has- It's because of the Down syndrome. Don't worry, it's just the Down syndrome. But my mom knew that was wrong. My mom fought to get me appointments, and when they found out about that, it wasn't because Down syndrome. That's why. Why I'm speaking today. Because If I was born earlier, I would have been completely deaf and I wouldn't be able to speak.
Tyler Johnson: [00:14:12] You know, Dashiell, one of the themes that I hear you talking about consistently is the difference between what people may be expect from you versus what they learn when they really get to know you. Right. And you have multiple times mentioned the word stereotype. And, you know, one way of thinking about stereotype is that it's our brains sort of lazy way of trying to fit people into boxes and then assume that everybody in a given box is going to be more or less the same. Right. So I'm curious, what is your. Understanding if you were to describe the the stereotype of Down syndrome. What do you think that stereotype looks like? Not the reality, to be clear, but what do you think the stereotype of Down syndrome, a person with Down syndrome includes?
Dashiell Meier: [00:15:11] There's actually a lot of, Like it or not, there are a lot of stereotypes about Down syndrome. We are seen as not intelligent and because in schools, People focus on the what people with Down syndrome can't do well, and they fail to see the humanity inside the people with Down's syndrome. And also, it's harder for people with Down's syndrome to speak and write because it's the teachers and other people who make assumptions since that, "Oh. He can't write this because he, because he's not smart." "He's not doing this. Oh, it's the. It's because of Down syndrome." And so, so so we have to prove ourselves to society to show them that, That we are smart, we just have a different way of learning things. I mean, same same goes to me like I hav other disabilities besides Down syndrome. I have dyslexia. It makes it hard for me to Spell things correctly and. I understand that. And so that's problematic. And so there's there's other stereotypes, like in history. We've been segregated for far too long. From the history of eugenics to the Nazis and their action T4 program. And We've been put in institutions. And also Nowadays, We get put in the special ed classes is that separate us from the rest of the students. And we want to have friends. And so how can we have friends when we just get put in special ed classes?
Dashiell Meier: [00:18:09] And that brings me to my movement that I'm that I'm starting. It's called the Disability Education Movement. And the goal is to teach people of the history of Down syndrome and disability so they get a more broader view of what they're doing to people with disabilities. As a whole, we still don't know what we have been through. And what we have suffered. And by understanding that side of us, they'll start treating us Like we're actual humans.
Henry Bair: [00:19:10] I think it's really interesting and enlightening that you talk about the history of people with living with Down syndrome even a hundred years ago. You talked about what it was like when certain regimes were adopting eugenics, which wasn't something I had thought about, actually. So thank you for sharing that. I think it's also very inspiring that you are creating this. Is it an organization?
Dashiell Meier: [00:19:38] It's a movement.
Henry Bair: [00:19:39] It's a movement. Okay. What are some of the concrete things that you would like to see accomplished by this movement? Like what are some specific things? I understand the overarching mission is to change minds about what Down syndrome is and try to get people to understand that, you know, you're just like you're like everybody else. You know, you have your hopes, you have your aspirations. You know, you have a very strong sense of identity. Right. But can you tell us what you would like to see in real day to day interactions in society, in schools? Like what would you like to see happen.
Dashiell Meier: [00:20:21] In the future with my movement, I want to see people getting along and I want to see people having friends with people with disabilities. But also, I really want people to understand and not to feel sorry for people with Down syndrome and other people with disabilities and to recognize that they're human just like everyone else. And that once they learned to understand us from the way we see society, we will start to get along. And that's what we all want. We all want the same thing, we all want to have civil rights. And I play a pretty big role in that. And with this movement, I hope to accomplish Civil rights for people with disabilities. And for other people to understand that We Are all capable Of bringing people together, even if we come from different backgrounds and. That we have different perspectives of the world.
Tyler Johnson: [00:22:14] Dashiell, I think the in some ways, the answer to this next question I'm going to ask some of the most powerful answer to it is just in the substance of the interview that we've been having. But I still want to ask it anyway, because I think your perspective is unique because it's yours. So you've talked a lot about the ideas that you perceive that people have of a person with Down syndrome, so that if someone meets you in a casual social setting and are maybe someone mentions to them or whatever that you have Down syndrome, then they form this set of ideas in their head about what you're going to be like or how you're going to interact with them or whatever. If someone in that position who is imagining the stereotype of a person with Down syndrome, if that person comes and then actually sits down and spends some time with you, what things about you do you think will most surprise them?
Dashiell Meier: [00:23:19] I have a pretty big vocabulary. And that, I love to read and I do pretty well in school. I get good, good grades and I'm planning on getting a diploma and going off to college, which people might find surprising and that I see the good and the bad of having a disability. Like I like. I love my disability because it's a part of who I am. And I don't want to change in any in in any way. I'd rather live my my life as someone with a disability than be what society wants me to be. Like I can make my own own journey. And since I'm another thing that would surprise people is that I'm chasing a film career. Like how many people are in the film industry? Like, there's not many people in the workforce and I want to change that. I still get to live my my life, and I just love that. I'm proud of having Down syndrome. I'm proud of having dyslexia. People may be ashamed of their disability, but they don't have to be. Once they know that they have A disability, They don't have to always isolate themselves from from the rest of the world. They have to learn to accept their disability and to enjoy life as it is. Once people really realize that, We can unite all of humankind to do the necessary things that needs to be fixed about society, like the unfair laws of the minimum wage. Like we're not being paid the same amount of money as anyone else in the workforce. And that's why I'm a self-advocate for people with disabilities. I have to persuade the world, the US government to change the the laws that would benefit everyone, including people with disabilities. And so far, I think I think I'm doing I'm doing a pretty great job at it.
Tyler Johnson: [00:26:59] I'm curious. One thing that I have recognized over time is that sometimes people who may not have a disability that is obvious to others around them and who may not have a lot of experience interacting with people who have disabilities that are obvious to people around them may feel a little bit. Hesitant or nervous. You know, you mentioned, for example, how much it hurts to feel segregated. Right. And and that you wish instead that you could just be a part of the larger group of students or whatever group you're in. And then you mentioned specifically that one of the benefits of being part of that larger group is that then people who have Down syndrome and people who don't have Down syndrome can befriend each other. Right. And what a beautiful thing that would be. I have heard some people who who may, let's say in this example, not have Down syndrome, who might be sort of nervous that if they try to strike up a conversation or they try to strike up, especially a friendship with someone with Down syndrome, that maybe they'll say the wrong thing or maybe they'll not quite know how to interact the right way or whatever. What advice would you have for people who might feel like that?
Dashiell Meier: [00:28:23] My main piece of advice is don't be be afraid of the person's disability and it's okay to feel nervous at times, but at some point you have to face that fear for what is. Like when you talk to people with Down syndrome and people with disabilities, you get a completely different view of the world. And I would say that would be a life changing experience. And for people without disabilities, because they don't know what's going on about disability and they don't know how to react to because they're afraid of people with Down syndrome. But we aren't scary people. Well, like there's nothing to be afraid of or we are great people who are just like them. And we need our opportunity to share our stories, share our perspectives, to address what we need. And how people can can change their views on disability as a whole.
Tyler Johnson: [00:29:55] One thing that I wanted to draw out from a couple of different comments that you've made, one thing that you just mentioned now is the idea that you, because of your disability, have a different view on the world than you would have otherwise. And then earlier, you mentioned that your disability is something that you love and that you wouldn't trade it. It sounds like from what you're saying, in part because of the way that it allows you to see the world differently. Can you help us to understand what are some things that you feel that having Down Syndrome has taught you that you might not otherwise have been able to understand or to learn?
Dashiell Meier: [00:30:38] If I didn't have Down syndrome, I wouldn't know how to react to someone who has Down syndrome. I wouldn't know What life is like for people with Down syndrome. I wouldn't know What people with Down syndrome have has actually been through history and nowadays. And that I'll be curious about it. And I want to Find out more about it. All right So I get a good understanding of what they've been through so I know how to React to when I encounter people with Down syndrome and when I talk to someone with Down syndrome. It will be a life changing experience for me. And because if I didn't talk to talk and interact with them, I wouldn't know any of that. All I know is the stereotypes. And that's it.
Tyler Johnson: [00:32:01] Yeah.
Henry Bair: [00:32:02] I think one of the one of the most striking things that you said towards the beginning was that you hope to be a filmmaker, which I'm so glad that you said that, because I think it does change what a lot of people will think is possible for for someone living with Down syndrome. And I think that your aspiring career as a storyteller, right, you hope to tell stories as a filmmaker works very well alongside your idea that having Down syndrome allows you to see the world in a new way and connect with people living with disabilities in a better way. So I'm curious to know what kinds of stories do you want to tell? What kinds of movies would you like to make?
Dashiell Meier: [00:32:50] I'm a huge sucker for action adventure. I'm trying to trying to make a TV show called Supercat from the comics that I made. And I'm also in the pre-production of my biggest 3D animated film ever called Uncharted Waters. I just want there to be more people with disability in the film industry. And so when I become a director, I'm going to to try and cast people with different disabilities.
Henry Bair: [00:33:31] You're making your I heard you're making your own 3D animated movie right now. Yes. Wow. How are you doing that?
Dashiell Meier: [00:33:38] If I'm being honest, I honestly don't know anything about 3D animation. And I've had this animation on my my iPad Pro and so I'm still in the learning stage. So there's a lot for me to learn. I, I watch the videos on YouTube about the making of my favorite Disney films and see how they make films. I watch videos on storyboarding, I watch them on script writing. I even have books on on writing scripts and how to make them better her and making my own scripts now and hopefully they'll go into production.
Henry Bair: [00:34:38] Yeah, well, I think it's admirable that you have a very clear idea of what you want to do and you are actually taking steps right now to learn as much as you can in the progress towards towards that goal. So yeah, I think I think it's fantastic.
Dashiell Meier: [00:34:53] Thank you.
Tyler Johnson: [00:34:54] There are two more things that I am hoping to address in the remainder of the interview. The first one is you're not, from what I gather, planning to go into medicine and become a doctor, which is probably just as well because it takes, you know, 20 years or something. But one common thread that I hear from what you're saying to what we try to do as doctors is that you have talked a lot about both people trying to understand your story and the ways that you try to understand other people's story, right? So what we might sometimes call empathy and I'm wondering if you can talk a little bit about how you think doctors in particular can do a better job of developing empathy for people who in any of many different ways maybe are not like them?
Dashiell Meier: [00:35:49] Yeah. And I would say that the main way is to understand that that they have a disability and be patient with them. Like give them time to talk, give them the opportunity to speak up for for what they want and listen to what they have to say because you never know what is going on with them, Medical-wise. And so My main point is that disability or not, we all can learn from one another. And that when we we listen, we can Learn to change our view on people to see them as who did they are. That's the most important factor.
Tyler Johnson: [00:37:08] And then our last question, which we ask to pretty much everybody who's on the show, and you may have just given all or part of your answer, but I want to explicitly ask you anyway. Many of the people who listen to this show are medical students or residents. They're in their medical training, or maybe they're young in their careers as physicians. If you were giving them advice as to what they can do to become better nurses, doctors, nurse practitioners, what have you, what would you say?
Dashiell Meier: [00:37:42] I would say treat them with respect and treat them the age they are. And Try to explain things in a way that the patients will understand. What's going on and what's going to happen to them. Always ask for permission before you do anything physically. And that's pretty important to know.
Tyler Johnson: [00:38:18] All right. Well, I know I speak on behalf of Henry and myself when I say that it's been a genuine pleasure to have you on the show. And we so greatly appreciate your time in making your way over here to speak with us.
Dashiell Meier: [00:38:34] I mean, thank you for having me on this podcast. It really brings me joy and I just like making people happy. And thank you for inviting me. It's such an honor and I can't thank you enough to tell you how much this means to me. Thank you.
Tyler Johnson: [00:39:00] You're very Welcome. And we wish you the very best in your movement.
Dashiell Meier: [00:39:03] Thank you.
Henry Bair: [00:39:07] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at www.thedoctorsart.com. If you enjoyed the episode, please subscribe rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [00:39:26] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:39:40] I'm Henry Bair.
Tyler Johnson: [00:39:41] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.