DocsWithDisabilities Podcast #22
Alice Wong, Part 1
Diana Cejas and Alice Wong, Part 2
In this episode we chat with Alice Wong, disability activist, media producer, and a consultant. She is the founder and Project Coordinator of the Disability Visibility Project, a project collecting oral histories of people with disabilities in the United States that is being run in coordination with StoryCorps. The Disability Visibility Project was created on the 25th anniversary of the Americans with Disabilities Act of 1990.As of 2018, the project had collected approximately 140 oral histories. Her new project is an anthology titled, Disability Visibility First Person Stories from the 21st Century. Joining Alice in part 2 of this episode is Dr. Diana Cejas, a physician with a disability and one of the authors in Disability Visibility. Dr. Cejas shares her journey to becoming a person with a disability and how her dual identities as a patient and a physician inform her work with patients. Her essay is titled, Taking charge of my story as a cancer patient at the hospital where I work.
Part 1 Alice Wong
Introduction: Lisa Meeks
Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks, and I am thrilled to bring you the DocsWithDisabilities podcast.
Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession.
Welcome back podcasters! It’s Fall 2020 and while nothing around us seems familiar, we will continue to bring you the DocsWithDisabilities Podcast and have an exciting Fall lineup that begins with a discussion with Alice Wong and Dr. Diana Cegas about Alice’s new anthology, Disability Visibility: First Person Stories from the 21st Century
I am so lucky to have connected with Alice during our times at UCSF, in fact Alice wrote the introduction to my first book on disability in health science education--affectionately known as “the guide.” Her words were so powerful that we’ve kept her introduction for the new edition Alice is a force of nature and her work has changed the landscape of voting and political action and discourse for individuals with disabilities. In her anthology, Alice included a story from a Doc with a Disability, a neurologist and cancer/stroke survivor.
This podcast is being brought to you in two parts. In part 1 we talk with Alice about her new book as part of her ongoing advocacy, and what this book means to her. In part 2 we speak with Diana about her story in the book and what it meant to be included in this project with Alice. Her essay is titled, “Taking charge of my story as a cancer patient at the hospital where I work.”
I am so looking forward to speaking with both of you and I am very appreciative that you’ve chosen to join us today for the DocsWithDisabilities podcast.
Let’s begin by chatting with Alice!
Alice Wong:
My name is Alice Wong, I'm the founder and director of the Disability Visibility Project, the editor of a new anthology published by Vintage Books titled, Disability Visibility: First-Person Stories from the Twenty-First Century.
Lisa Meeks:
I am so excited to have you on the podcast. I really enjoyed working together and I know we share a lot of the same interests.
When I read your book, there was a passage that made me feel even more connected to you. And that says in the opening of your text,
“what began as a way to create space online for people to talk about disability evolved into a nonpartisan campaign, encouraging the political participation of disabled people, emphasizing the power of conversations and action in the face of inequality, ableism, and oppression. The hashtag now belongs to the community. Disabled people use it every day, and reporters and politicians are following it as well. Storytelling can be more than a blog post, essay or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.”
And I loved that, I loved the sentiment that you created this space, you created this #CripTheVote hashtag, and you gifted it to the world to kind of move forward this agenda, this community. And I feel the same way about# DocsWithDisabilities and kind of doing that parallel work. You told the story of creating the hashtag and the very organic kind of growth of the use of this hashtag to bring people together. Can you talk about how your advocacy has evolved from your blog all the way to this book, and what drove you to collect these stories?
Alice Wong:
Stories and storytelling is a form of activism.
I think it's absolutely... Here we are 2020 and yet for so many communities, our stories and really authentic representation of who we are is nowhere close to parity. And I feel this way about people of color. I feel this way about queer people and definitely disabled people. You know, disabled people are part of every single community and that disabled people of color exist, disabled immigrants exist. I think this is one of the efforts in terms of just, not just telling my own story in my own way, but also amplifying the work of other people that you know there's just so much out there, especially I would say the last 10 to 20 years as I've become older and it's just been a really exciting time. We see the huge creativity of people online with their own platforms and allows them to be authentic and really this is a way that I’ve grown as well as a person and we are constantly learning and connecting with other people and I’m learning and changing because of community and because of keeping these connections. And I do think that hashtags like #DocswithDisabilities or #CriptheVote or something as important as Black Lives Matter, it's been a way to organize people. It's a way to drive the conversation. It's a way to re-center our conversations to us and I think that’s incredibly necessary in a time where we still have to fight to be seen and heard.
#CriptheVote is something I started with Andrew Pulrang and Gregg Beratan, so it's just the three of us, three disabled people who felt like something was missing in the 2016 election. And that's how we started. We didn't start with mon-profits, we didn't use anybody, or were affiliated with anybody, or any major rights group. We just thought hey, let's just see what we can do as three individuals, and it became a movement. I think that was really gratifying to see that a hashtag is not... there's a lot of people who just poo-poo online activism. They say this is not the same as major parties on the streets, or like at a rally or being at a protest. But I really believe that online activism is half the leverage, just as strong as other forms of activism. They complement each other and I think its just proof of what activism can be and who can be an activist. I think there's so much to demystify. It took me a long time personally to understand the word activist, to say I am an activist, because I had to kind of unearth a lot of my own assumptions, and I also had to be proud of the work. I think that there is labor involved, there actually are real results. I think that is something to be proud of. I think a lot of disabled people can be so active online, create communities, create safe spaces, and also vocalize from their bedrooms, from their homes, from all kinds of places because they're able to do that through technology.
In a lot of ways, I think a lot of ways, like this book, these are just different ways to package our stories, and activism has many different formats because it's all about having a variety, just different ways for people to process our stories and our lived experience. As well, I love podcasts and I love podcasting as well. So, there's just a lot of things I like to dabble in and it's just fun.
Lisa Meeks:
[Giggles] It is fun. On the good days it's fun and on the tough days it's exhausting but somehow still exhilarating, and I hope you know what a magical space you have created and just this enormous community.
In your introduction, you talk about, “community is magic and community is power, community is resistance and it's visibility.” In the visibility portion, you talk about bringing this collection of stories together through your book, Disability Visibility and You also talk about how some people that are reading this may be unfamiliar with some of the terms of uncomfortable with some of the ideas presented in the book, and you say and I love it, it so captures your personality; you say, “that's a good thing!” And I believe it's a good thing. I'm wondering if you can share with the audience why you think it's a good thing that people may be uncomfortable with some of the ideas in this book?
Alice Wong:
Yeah, thank you for asking that. I do feel that the intention of this book is related to me dying. So, I think about, instead of what I want or basic stuff that you see that's out there in mainstream media, you know there is a lot of human interest stories and it's a lot of inspirational stories, but very often it's very surface related and if it was centered on, this is what it's like to be me, or I want to build empathy for you as a non-disabled person or I want to raise awareness. And as a say the word awareness, I am rolling my eyes right now, because awareness, yeah that's great, but who is that really for? That's not really for us, it's really for non-disabled people.
So, I really want to shift the center, shift the lens and have it centered on us. I want to embrace our language, our approach, the way we tell our stories in a way that's not filtered for the comforts of the reader. I think most people assume that the default audience is not disabled. I was very careful about making sure that I didn't make choices to where I want to placate, or meet the expectations of disabled audiences. I want to raise the bar. I want it to be challenging because I think there's already plenty of filtered stories out there. I think if I'm going to have this opportunity, especially if this is a once in a lifetime opportunity to edit an anthology, I'm going to do something that advances our communities and advances the culture.
When I say culture, I mean the broader culture. I want to change the landscape, and this is just one book but I feel like sometimes that's where we have to start. I really want to, I want people to read it first, especially not disables folks, I want them to think about things and reflect a little bit and just sit with the disability discomforts. The very first essay in the book is a real punch in the guts. It is this one essay that, if a reader picks up this book, I personally selected this one by Harriet McBride Lawson, because it is incredibly powerful and it captures so much about some of the very real ableism and eugenic attitudes that's pervasive in America today. The way Harriet is able to bring a reader through her experience, whether it's traveling, staying at a hotel as a disabled person, or just working with her personal assistants, or in her very real interactions with a philosopher who believes that disabled infants do not deserve to live.
This philosopher is one of the most famous, well-known philosophers out there, advocates for infanticide, and I really want readers to understand this is something that's very real that disabled people face every day, I think, throughout the world and within their families, these kinds of attitudes. I really want this to be a wakeup call, and I also hope it gives some comfort to disabled people. I want them to feel safe throughout these 37 stories and feel like they're not alone.
Lisa Meeks:
Yeah, I absolutely agree. I think, I see so many times when people will come to a talk, whether it's faculty or the community and they will hear someone present, and they will feel better about themselves through hearing this story, they will feel... I hate the word, but they will say they feel inspired and then they will leave, and they don't think about it again. It's not something that... they feel very good in that moment, they go home, they feel better about themselves. But it doesn't result in any forward movement, and I think that uncomfortableness is where action has to take place, because this disconnect between what you're feeling and what you're doing is pretty large, right? It's causing this dissonance.
And so, people have to work through that, and so often as they're working through that, that pushes the agenda forward for inclusion. They start to understand better the exclusion of individuals with disabilities. And so, I just loved when you said that, that it should be uncomfortable for you at times. And I, you call out... You say,
“to the non-disabled reader of the book, how many disabled creators do you know of? How can you support their work? Whether it's a podcast, novel, play, video, or blog; how are you widening your horizons.”
So, you're really challenging the reader, and you go as far as to challenge the big five publishers to say, we want a disability-centered imprint, which I just love and I'm going to put all the good juju out in the universe too for that.
I think it's critically important and bringing this, this is a first of them bringing these stories together, just that really elevating the individual story. And so, in line with this podcast, you have brought one of your authors, and I think, do you want to tell us why you chose this person for the book and why it's really relevant to what we're talking about on the Docs with Disabilities podcast?
Alice Wong:
Yeah. It was really difficult in selecting the essays. I had a spreadsheet of all kinds of things, just a long list. But I wanted to capture something that was really powerful, personal, and political. That's actually the through line of the entire book, because each story is very much an individual story. It's not like there's five stories about relationships, or five stories about employment. Each of these stories are critically singular. And I really wanted one about a doctor with a disability, because just like you, Lisa, you know this, there is still so much surprise I think, and to me that's really bizarre, but there's still like “can disabled people become doctors?” Like, I don't know, it's been like they're unicorns.
Lisa Meeks:
[laugh]
Alice Wong:
And I feel like, hello, there are plenty of doctors that become disabled after school, but still somehow, it's inconceivable that disabled students try to get into med school or survive med school. We know, we know that within every profession, especially incredibly high-pressured educational schools. Excuse me. Especially high-pressure fields like the law, like medicine; there are so many people with invisible disabilities that are just not comfortable yet or willing to disclose even though they clearly have disabilities and utilize, maybe, accommodations or other supports. But this really speaks to these professions and how their education is structured. But the work is structured in such a way that it weeds out a lot of people, and it also creates a very toxic culture for those that want to be in it. And I feel like Diana is a beautiful writer. I started following Diana probably on Twitter, and I think that this is an example of learning from Diana, and being a fan of Diana, so when I saw her essay it was just incredibly tender and just a beautiful story. And just, the fact that it was such an important interaction between a doctor who is also a patient, with a fellow patient. I feel like this is something that’s such an important story to share, because Diana really embraces her vulnerability and I think a lot of doctors can learn from that.
Lisa Meeks:
Thank you, Alice. Thank you for agreeing to be part of our podcast series and thank you for bringing these stories to the reader and to the world in an effort to educate the audience and empower the writer to tell their story.
I want to thank our audience for listening to Part 1 of this podcast. Please join us for part 2, where we interview Dr. Cejas about her experience becoming a disabled physician and how this experience informs her patient care. I found the story to be incredibly touching and her writing incredibly vulnerable. There was a softness of kindness in her words. I hope you will join us for this incredibly moving conversation.
Sofia Schlozman:
We would like to thank Alice Wong and Dr. Diana Cejas for their openness in sharing their insights and experiences with listeners and readers alike. These stories remind us of the power of personal narratives to challenge assumptions and promote more inclusive and welcoming environments. Disability Visibility: First Person Stories from the 21st Century, edited by Alice Wong, is available now through Vintage Books and features more powerful stories from contemporary disabled writers.
We would also like to thank you, our audience, for reading and listening to this episode. We hope you join us next time as we speak with Dr. Walker Keenan, a psychiatry resident at Yale University.
This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. The opinions expressed in this podcast do not necessarily reflect those of the University of Michigan Medical School.
It is released under a creative commons, attribution noncommercial, non-derivative license. This podcast was produced by Lisa Meeks and Sofia Schlozman.
Part 2. Interview with Dr. Diana Cejas and Alice Wong
Introduction: Lisa Meeks
Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks, and I am thrilled to bring you the DocsWithDisabilities podcast.
Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing researchers and policy makers that ensure medicine remains an equal opportunity profession.
Lisa Meeks:
Welcome back. We hoped you enjoyed part 1 of this episode. In part 2 we continue our discussion about Alice Wong’s new book titled Disability Visibility: First Person Stories from the 21st Century. In this half of the episode we turn our focus to the author of one of the essays. This essay, titled Taking charge of my story as a cancer patient at the hospital where I work, was written by Dr. Diana Cejas, a neurologist, who has the lived experience as a patient. [https://www.cbsnews.com/news/doctor-diana-cejas-cancer-stroke-survivor/]
Diana Cejas:
My name is Diana Cejas. Um, I am a pediatric neurologist, assistant professor of neurology at the University of North Carolina at Chapel Hill and faculty of the Carolina Institute for Developmental Disabilities. That's a very long title. I am also a cancer survivor, stroke survivor, and proudly disabled. Happy to be here.
Lisa Meeks:
Well, I'm thrilled to have the opportunity to speak with you, and I am especially thrilled that your story was included in this new book. I, like Alice, have followed you on Twitter, and I always find your posts to be so uplifting and positive. And that's one thing I love; you, there's a vulnerability that you also have in your presence on social media that invites others with disabilities, other docs with disabilities to engage and celebrate that identity and learn from one another.
In reading your story, there were so many things that I wanted to ask you about. I think the way that you wrote about your experiences is really moving. You, presented yourself as a “morbid little celebrity,” and I found your choice of words to be so interesting because, in medicine, when there's an unusual case, everyone's obsessed with that case, right? And they want to know more and more. And I think as a learner, you can understand that. But then when you become a patient, it must have felt so invasive and, and your... the sentence, the way you write about it is that:
“There was a better chance of winning the lottery than getting your kind of cancer. Being an "interesting patient" who also happened to be a trainee made me a morbid little celebrity. I was the topic of conversation at nurses’ stations. My tumor headlined at the oncology conference in morbidity and mortality review."
And I just love the way you write about this experience. It's almost like you're outside of it, watching it occur. Can you tell us a little bit more about when you were going through that period because you were treated in your own hospital, which I think is also very, can be very, very difficult?
Diana Cejas:
It was, I still have a lot of complicated feelings about the whole thing, and I think you hit the nail on the head with talking about how we treat interesting cases of medicine, interesting conditions, just as that: a case or a condition. And I mean, I've been a trainee, I'm still really fascinated when I see some, hear some of my patients' stories and see some of their conditions, but there's such a temptation to separate the person from the pathology in medicine. And it just kind of becomes second nature after a while. You... Sure, I mean, a lot of times you are still able to make small talk with your patients while you're on rounds, or maybe check in with them and see how they're doing, but you're really just so focused on their particular pathology that I feel like there's a lot of dehumanization that goes along with that.
And I really did not know how it felt until I was on the other side of the bed, and it was so strange to me. I mean, especially, I'm an introvert. And so, the idea of being kind of the focal point of anything is kind of terrifying to me. But I would meet people, a lot of the residents oftentimes and trainees would be like, Oh wow, you're the Peds resident. Oh, I saw your tumor or Oh, I saw this, I heard this lecture. And they were so excited to talk to me about it because that's what trainees do. You see a really interesting case, you talk about that interesting case. But they were talking about the case that was me as if it wasn't me. And it was a very strange feeling. I wasn't sure how to process that and internalize that at the time, because I had all these other things and I was trying to think about.
But being a patient in your own hospital, it's good in that I feel like I had everybody paying extra attention and trying to be as careful and thorough as possible. But on the other hand, there were times when I was just like, can you please just leave me alone? Let me be so that I can figure out what's going on and what this all means for me, and just give me a second to kind of figure out how this is going to change my life.
Lisa Meeks:
Yeah. That, and that absolutely comes through, I think. And you're there to learn at the same time. And so, it's not only your career you're having to kind of rethink, your trajectory and how you're going to navigate this, but also your new identity as a person with a disability. And then, to have everyone come with this kind of barrage of people, whether the intentions are good or not, I can't even imagine how overwhelming that must have felt. Especially in the immediacy of returning to work.
There's another paragraph... I literally could have highlighted the entire story. It was just so beautifully written, but you, there were parts of your story that just brought me in and I thought you should be writing stories like this. The writing was so, so good. You said,
"I was trying to decide between mashed potatoes and pudding, both soft, both safe to swallow, both exceedingly unsatisfying. When his cheery voice pulled me away from this rumination, you were kind of a mess. He got the chicken and I got jealous. You were so altered. You tried to kick me out of the room. Do you remember? That's when we called the code. I shook my head, forced a smile, wiped the saliva that had puddled at the down turned corner of my mouth. He chatted away and I trailed behind him listening as he told me about myself."
I, when I read that I, I had to take a minute to just kind of absorb the heaviness of how that must have felt for you. And I would assume, you don't say, but I would assume that this person was either at your level or someone above and you probably didn't feel empowered to really stop the conversation or to say, hey, boundaries. Which is one of the issues when you have a disability and you're in medicine, right? Everyone thinks that your disability should be an open book. Do you remember that moment and kind of how you were feeling?
Diana Cejas:
I do. I was just trying to get through the day at that point. I had not been back at work very long and they kind of, I was lucky in that my program directors were very accommodating and they kind of let me ease back in, but this was a point where I was really coming back to clinical service. I don't think I'd been there more than a week or two. And I happened to run into this other resident and he had been involved in my case. He had come to see me several times while I was still in the hospital. And I think this was the first time he and I had seen each other since I was back at work. Recognized me immediately because that's what everybody did at that point in time. And he was just so excited to see me.
On one hand I was like, oh this is nice because I get to chat with another resident and that's fine, but it was so strange to listen to him talk about the code and me and the moments around it, because my memory of those moments is hazy at best. There are a few things I remember here and there. I can remember some voices and some things that I was trying to do, but the stroke itself was a very blurry time for me. And it was just very strange to hear this person who had all this knowledge about things that I was doing and saying, and my behavior in this moment. And I had none of that memory. Again, this was a time when I was still trying to get used to living in this body that had been irrevocably changed and feeling like I didn't know myself anymore as a person feeling like I didn't know myself and how my body moved in the world feeling like, I didn't know how in the world I was going to function at work.
And here's this person telling me all kinds of stuff about me that I had no idea had happened, I had no memory of, and it was very, it was intimate. But it was also, I felt very, just completely naked in that moment. And like everybody had seen something or knew something about me that I had no idea was the case. So, actually, this, this person and I kept running into each other because that's what happens when you're in a hospital that's not that big. And every time I would see him, he was always so excited. He would talk about, oh, you look great, looks like you're doing really well with your therapy. He was really excited for me. But it was still always kind of strange for me because I was like, okay, you know, sometimes we would come across each other when we had a mutual patient, sometimes in the cafeteria, like it was in this particular moment.
And it always felt a little bit strange because again, here's this person that has this knowledge about me that I don't even have for myself. And he was just all too happy to share and talk about it, like we were just talking about the weather. So, it was a very, again, another one of those moments where you don't quite know how much power a doctor can have over you and that power can make you feel all kinds of different things, and it can take a long time to process how you feel about it.
Lisa Meeks:
I can't even imagine how difficult that must have been for you. And that's the feeling I get from your writing. I, you see you actually viscerally feel kind of what you were feeling through your use of words and how you situate them. I felt naked for you. I felt like you had been exposed in a way that was uncomfortable yet the intimacy of it was juxtaposed by this total distancing of it from him when he spoke about it, as if you were just another case. And, I can't imagine again resolving those two very distinct feelings, very different feelings, in this moment, right? Of this conversation, and throughout your recovery and your continued time and in that hospital. And I think a page later you really bring it home when you say,
“We commit to learning for a lifetime. None of this mattered when I was diagnosed, medical school does not teach you how to be a patient.”
And this is where your essay starts to turn from the experience and how you felt and the vulnerability, and the distancing of this cross between feeling very exposed and naked and also being very depersonalized, to this growth of kind of accepting your disability. And to me, you didn't say this so much in the article, but when I was... Or, in the essay, but when I was reading it, I really felt like you started to take ownership of it. And as you felt more comfortable and you took ownership, you started to appreciate the connections, but you were also a little bit more in command of putting boundaries on those and telling your story the way you wanted to tell it. And when you wanted to share it, that kind of thing.Would you say that that's true?
Diana Cejas:
I definitely think so. Just being able to say the word, say that I am disabled, even now, it still feels like I am posing in some kind of way, and I think that that's just because of the ableism that I've internalized over the course of my life and the course of my career. It took me a while to be able to think of myself as disabled and not have to put any kind of caveats or tags on it. There is a very strange kind of imposter syndrome that comes along with cancer and not feeling like I have the right kind of cancer or the kind that comes with t-shirts and hashtags and all of that kind of thing.
Not feeling like I was enough as a disabled person, not claiming, not feeling like I fit at all. And I think that that's partly because of, or largely because of, the stereotypes that we have around disability and again, all the ableism that's just ingrained within medicine. I mean, I've had chronic illness since childhood. I mean, I've had migraines since I was a child, so I've always been in this community. I've just been like, no, headaches are just something that happened to me every once in a while, even though it was more like every week for a while there. It was something that really affected my life. And I was like, this is just something that happens. It's fine. It is what it is, went through medical school having to make accommodations for it and feeling ashamed of needing particular accommodations and asking for help when I needed it.
And there's so much shame and stigma in medicine around just needing help for any reason. So, when it came time for me to... I had this illness. There was a lot of shame that I had just around the fact that I needed to take time off to have a surgery of all things. I remember one of the hardest days that I had, it wasn't the day that I got my diagnosis, although that was a very difficult day for me. It was when I had to go to my program director and say that I had to take off time, so I'd be messing up the call schedule. To say that out loud now is just, I'm like why in the world would I be ashamed of something like that? I literally had cancer. There was nothing that I could do or nothing that I should do other than focus on the cancer, but so much in medicine and medical training is about this concept and warped concept of resilience and what that means for... Basically, you're just supposed to be some inhuman kind of a robot, I guess.
So, it took me a while to really deal with the idea at first, I had to get used to my body and its new limitations. That took a while for me to think about and to process. It took me a while to realize I did not have to be that superhero all the time. Again, the cancer community, there's a lot of pressure put on people going through treatment and cancer survivors to be positive and optimistic all the time. And to just look like you can do it. You're wonder woman. Everything's perfect. So that coupled with the whole, oh, I can do anything because I'm a medical resident and everything's going to be great, really took a long time for me to kind of stop and say, no, it's okay that my body has these limitations. And it's okay that some of these limitations mean that I'm going to have to take some time off occasionally to deal with my health. I think the first time I really got hit in the face with that and started to push back on it was an interaction I had with someone who I've really respected where I was asking for accommodations and they suggested that I just needed to work harder. And I remember kind of thinking like, don't you know how hard I'm working right now? I'm not asking to not do my job. I can still do my job. I just need to be able to do it in a way that's safe for my body.
So that moment was one of the first moments when I started to kind of internally push back against some of the ableism that was casually sprinkled throughout the day, both towards me as a patient and then towards my patients in the work that I was doing. But I think things really changed for me. The specific moment that I can remember was when I shared my story, where I was just, honestly, I was just talking to some of my juniors and medical students trying to kill time at the end of the day and my patient or my attending, who happened to be a stroke survivor as well, and had a stroke during young adulthood, decided to share his story with me.
I still don't think that he knows how much that meant to me.
Lisa Meeks:
You wrote about this in the book. And so, I hope that, I hope that he's listening or I hope that he reads this in the book because it's a fantastic story. Go ahead.
Diana Cejas:
Yeah. I wasn't expecting him to say anything. I knew vaguely that he had had a stroke. I mean, people kind of talked about it, but it was also kind of in a joking way because he's very soft spoken. And part of the reason is because of his dysarthria. And people would kind of make jokes about how hard it is to hear him. And I would kind of laugh and play along before, but that was basically the extent that I knew about his illness and his injury.
And then he just, out of the blue, while I'm talking about things, asked me how I did with movies. I can still see this moment and me being very confused and wasn't sure what he was talking about. And then he started telling me how his emotions changed after the stroke, his stroke that he had had when he was in his thirties, and I believe he was still, he was, I think in fellowship or just becoming a brand new attending when his happened, and how he had to navigate that, how it changed his practice, how no one seemed to understand what he was going through, and how he felt. And everything that he was saying were things that I was feeling, but I didn't know how to express. I was still receiving physical therapy and I think speech at that point, trying to work that around, still trying to figure out what in the world I was doing and how to keep moving forward and had all these feelings, but couldn't figure out how to put them into words.
And here comes this person who just randomly was like, well, let me tell you about my experience. And I, it meant so much. I mean, I had received some therapy is part of processing things, and you kind of had to be in therapy to be in this, this particular cancer center that I was in. But they kept, my therapist recommended that I go to support groups. I tried to find a few support groups and nothing ever seemed to fit. So, I don't think I understood how powerful it was to hear about experiences strictly straight from other disabled people. And in that moment, I really felt a connection for the first time with someone who understood what I was going through. And that moment honestly, is one of the things that has compelled me to be more vocal about my own experiences, continue to share my story because I remember how it felt. And I'm just kind of like, if there's a way that I can help someone else who's going through this who feels alone and not understood, then... And if my story is something that can help with that, then I'm just going to keep talking as loudly and as much as I can.
Lisa Meeks:
You say in your essay,
"He went from physician to patient and back again. It was his story, but I knew all of the words. I was the only one I knew of what this type of cancer. I was the only one, my age, who had had a stroke. I was the only one, but then he spoke and I knew I wasn't alone. It's not movies, I said, it's commercials. And he smiled."
It's almost like you had this exchange that no one else would understand. And I think this gets back to what Alice was saying in the beginning about stories are so powerful, and in many ways, and I'm paraphrasing here, but there's a sentence in the beginning, in the introduction that Alice wrote, where she says stories are the closest we can get to shared experiences. And I think that this is one of the things that compels me and motivates my work about bringing these stories to life for other physicians, to hear people that are in the pipeline that want to go into medicine and think that they can't because they don't know. And if we have silence around these issues, then no one will ever know what anyone's been through or what they have... their journey to medicine or through medicine. And so, I'm so grateful to you for your willingness to tell your story.
And you write in your essay, you say,
“all you're really doing when you interview a patient is you are asking them to tell you a story. All the patient really wants is for you to listen to them. That's what we all want, isn't it? It's one of our most fundamental drives to be seen, to be heard, and to be understood.”
Your writing is just, it's transcendent. Really. It is absolutely wonderful. You go on to tell stories in your essay about having these moments where you've connected with other physicians about having a shared experience of having a disability or having had a chronic health issue. And I love how you weave these stories into your essay, but you also talk about how much it's helped you connect with patients. Can you talk to our audience a little bit about one of the benefits that you think having been through this experience and being a doctor with a disability has for the patients that you serve and for your peers as well?
Diana Cejas:
Yeah, they, I feel like in medicine, there's this... there are arguments about whether or not you should disclose having an illness or having a disability to your patients. I've kind of taken it on a case by case basis over the years, but I really started wrestling with the idea when I was in my neurology training. When you're a pediatric neurologist, you spend the first year of your training primarily working on adult neurology. We worked in a stroke center and a cancer center. So, I was having my own experience and relieving feelings about my experience constantly for the first few months. And there were times when I would see patients who had stroke symptoms like mine, or who are going through treatment and having surgeries like I had had, and not knowing how to feel and how to connect with them in those moments.
But the first time I ever actually remember sharing the fact that I was a stroke survivor was with one of my younger patients who was a young teenage girl with a few other medical conditions, but she came in for a stroke and I was the first neurology responder to her particular stroke code. By the time we saw her, she was doing pretty well, but she had had, she still had some, we say duel problems with some weakness in her arm. And I think also some problems with her speech. And at that point in time, I was like, Oh, that's, I have some residual weakness in my arm along with some other sensory issues. And I still have some issues with my speech and dysarthria. So, I was waging this war within myself about, do I say something? Do I not say something? And talking with this girl when she was in the hospital, she and I would just kind of talk and chat just because that's what you do in pediatrics.
And she would start to say something about how she didn't understand why it was her. Why she was going through these things. She had all these other chronic illnesses and she just wasn't sure how to feel about this stroke. And she wasn't sure, one of the things that she really wanted to do was to be able to go to school, and I think that she wanted to be a physicist, of all things. And I say that because I actually have a physics degree. So, I was really feeling for this girl. And I was like, all right, listen, yes you can go to school. Yes, you can still do this. Yes, I know that you had a stroke, but that doesn't mean that you can't still keep moving. And I didn't go too, too far into my story with her, but I at least told her, I can, I'm here. I had a stroke too, and I'm still doing what I want to do. I can still do what I love and sure, sometimes you're going to need help, but that's okay.
I followed her over the course of, like for the rest of my training, which was only, I think a year and a half at that point, but it was so nice to get to see her grow and develop just as a regular teenage kid, but a regular teenage kid who happened to have a stroke, who happened to have other chronic conditions. And I like to think that me sharing my experience with her helped her some way. I've met other patients over the years where again, I kind of take things on a case by case basis. Now I've had patients, particularly it seems like now it comes up even more commonly with migraine than it does with the stroke and the cancer, because I have so many patients who have migraine and other headache disorders, where I will be very forthcoming.
I'll be like, yes, I know this sucks. And I know it because it's not just because I'm treating patients because I actually know how this pain feels. And when I talk to patients about getting school accommodations for things like headaches, I say, I know that it's difficult to get these accommodations. I've literally been there. I understand how people think that this is just a headache and how you should be able to power through it, but how... No, migraines and even headaches themselves, any other headache disorder, it's not just a headache when it's something that affects your whole life. So, I feel like I've been able to have more sense of community with some of my patients. I've actually been able to share some of my experiences with like, especially with some patients who've been more hesitant to try certain therapies. If I have personal experience with it, I can be honest.
I'm like, yeah, sure. I had to take that medication. It made me really nauseous, but it helped me out. Maybe it will help you. I don't know. So, I feel like there've been times when that insider knowledge has been very helpful. And then not only just for me interacting with my own patients, but in helping my colleagues understand some of what's going on. I mean, unfortunately I don't feel like doctors, even though most of what we're supposed to do amounts to listening, we don't really spend as much time listening to what patients are really saying. And I feel like there have been a few times when I've been able to say, Hey, listen, no. Let's not do that because that procedure hurts. Or maybe we can think of another way to do this, or putting a person on that kind of a regimen where they have to take medications three, four or five times a day, that's not sustainable.
So being able to have that experience, because I know what it feels like to be on these regimens. I know what physical therapy feels like. I know what it feels like to have problems getting accommodations for work and for other environments. Being able to have to say, no, I am your colleague and I have gone through these things. I think it's been good for my colleagues and that they've been able to kind of see, I don't want to say, take it seriously, but take it more seriously. Because there's someone who is like them, but dealing with things that patients are doing.
Lisa Meeks:
Thank you so much. And I can't thank you enough for lending your story to this book. I have enjoyed immensely reading all of the stories in the book. Again, it's Disability Visibility: First Person Stories from the 21st Century edited by Alice Wong and available through Vintage Books. I want to close our time together today by once again quoting Alice. In the beginning of the book you write,
"Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and non-disabled. Disability is amenable and ever evolving. Disability is both apparent and non-apparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is socio-political, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride."
And there's no other profession that I can think of where the risks are as high in sharing a story of disability as there is in medicine. And that is, again, one of the reasons we have developed this campaign and this podcast is to share stories of success, to identify the potential kind of barriers that those coming into the profession might face, but also in the hopes that our colleagues, our leaders are listening and that they're learning. So, I am so grateful to both of you and Alice, this edited, this book of stories is powerful and I can feel the amount of work that went into it.
And as you described, how you curated it over time, and trying to be very cognizant of representation. And I'm so grateful to you for thinking of the medical profession. I know that has long been something that you have considered the impact, of course, on disability and health professions education. So, I am so grateful to you for really bringing this to the world and I encourage everyone out there, whether you're a part of the disabled community or not to purchase this book and sit with it. To make space, to welcome these stories into your life, to sit in, what Alice said, is this discomfort and to challenge yourself, to rethink what Diana has expressed as deep-seated ableism. So, we all have a lot of work to do, and we all have the opportunity to grow. And I think that this book is certainly a great start to that growth. Alice, Diane, I cannot thank you enough.
Alice Wong:
No, I just want to thank you and your staff for all that you do as well. I feel like we are really doing this as a collective effort. I think changing institutions, changing the culture, doesn't happen overnight. It's a lot of baby steps. So, I would just plant these seeds left and right and I really do hope that, I'm looking forward to the future and I think this book and this podcast and everything in between, it's all going to build toward the goal of justice. Hopefully that's where we're headed.
Diana Cejas:
I completely agree. I really appreciate you for inviting me, Lisa. to do this podcast. I appreciate you, Alice, for reading my work and including me in this book. I wish that I had had this kind of community, and wish that I had been able to see patients with disabilities, doctors with disabilities when I was right in the thick of things, going through my diagnosis and treatment.
I'm so thankful for this community now. I'm so thankful that I get to follow both of you on Twitter and learn things from you because we don't get the best disability education at med school. So, I still feel like I'm learning, I'm growing. And I think that the work that you're both doing is just so important and we can learn so much. And I think that it can, it can really help us, those of us who are in medicine, be better doctors, take better care of our patients. So again, I'm so happy to be included here.
Lisa Meeks:
Well, thank you both. The work is a joy. I think for those of us who are internally motivated to make change, it's just, it's the most joyful work anyone could do. I can't believe I get to go to work and bring these stories to the community and help change the landscape of medical education.
To our listeners, please continue to take care of yourselves and stay safe in our ever evolving and very challenging time as a community. I wish everyone the best and thank you for listening.
Sofia Scholzman:
We would like to thank Alice Wong and Dr. Diana Cejas for their openness in sharing their insights and experiences with listeners and readers alike. These stories remind us of the power of personal narratives to challenge assumptions and promote more inclusive and welcoming environments. Disability Visibility: First Person Stories from the 21st Century, edited by Alice Wong, is available now through Vintage Books and features more powerful stories from contemporary disabled writers.
We would also like to thank you, our audience, for reading and listening to this episode. We hope you join us next time as we speak with Dr. Walker Keenan, a psychiatry resident at Yale University.
This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. The opinions expressed in this podcast do not necessarily reflect those of the University of Michigan Medical School. It is released under a creative commons, attribution noncommercial, non-derivative license. This podcast was produced by Lisa Meeks and Sofia Schlozman.