Show notes
“We need to become aware of the spectrum of disabilities that’s all around us so that the people who are disabled themselves don’t have to do as much teaching” Harry Paul is an MD/PhD student who speaks, writes, & researches about disabilities in medicine. He joins us to discuss disability & his superb STATNews piece as well as the impact of stigma & Covid19. He also provides critical insight and understanding around “Ableism.” Please check out the bottom of the shownotes for full transcript of our conversation with Harry. We will be doing transcripts of episodes going forward, and if there is a particular episode in the Explore The Space Podcast archive you’d like transcribed, please email mark@explorethespaceshow.com Please subscribe to and rate Explore The Space on Apple Podcasts or wherever you download podcasts. Email feedback or ideas to mark@explorethespaceshow.com Check out the archive of Explore The Space Podcast as well as our White Papers and much more! Follow on Twitter @ETSshow, Instagram @explorethespaceshow Sponsor: Elevate your expertise with Creighton University’s Healthcare Executive Educational programming. Learn more about Creighton’s Executive MBA and Executive Fellowship programs at www.creighton.edu/CHEE. Key Learnings 1. The value of wrecking hierarchies and building on bidirectional learning 2. Where Harry has decided to place his advocacy energy around his own disability and entering the profession of medicine 3. The opportunity for improvement around understanding what disability is and what it means 4. How the terms “disability” & being “on disability” are reductive and loaded words 5. Identifying as disabled & dealing with the concomitant stigma 6. What are hidden disabilities and the problems that arise when they aren’t acknowledged and accommodated 7. Harry’s description of his own hidden disability & the particular challenges Covid19 brings 8. Ways we can improve our acknowledgment of hidden disabilities in the hospital 9. What does leadership in this work look like 10. Defining and understanding the term “Ableism” 11. The 3 components of Ableism 12. A counterpoint to “don’t let your disability define you” LinksTwitter: @_HarryPaul_ Thread on Alt-Text use on Twitter Link to Harry’s article in STATNews Harry’s archive of Twitter threads related to disability & medicine Episode Transcript Mark Shapiro (00:00): Welcome back to Explore The Space Podcast. I’m your host Mark Shapiro. Before we get to today’s episode a thank you to our sponsors of this episode, Laurie Baedke and Creighton University. Creighton university believes in equipping physicians for success in the exam room, the operating room and the board room. If you want to increase your business acumen, deepen your leadership knowledge and earn your seat at the table. Creighton’s health care executive education is for you. Specifically tailored to busy physicians, our hybrid programs blend the richness of on-campus residencies with the flexibility of online learning. Earn a Creighton university executive MBA degree in 18 months or complete the non-degree executive fellowship in six months, visit www.creighton.edu/CHEE to learn more. My guest in this episode is Harry Paul and Harry is an MD PhD student who speaks, writes and researches about disabilities in medicine. Mark Shapiro (00:56): I found Harry on Twitter actually several months ago and have found him to be extraordinarily transparent and informative and honest. And he recently wrote a superb piece in STATNews which is linked in the show notes, which discusses the topic of hidden disabilities. So he came on the show to talk about this concept of hidden disabilities and disabilities in general, the opportunity that’s in front of us to deal with this topic better, to understand it better, to find some shared understanding around what these terms mean, as well as the stigma associated with them and the impact of the COVID-19 pandemic. We also spent some time discussing another term ableism and the prevalence of ableism and the impact that it has. And again, opportunities to get better and opportunities to lead that work. There’s also a host of other links in the show notes that Harry has provided. So I would really encourage you to take a look at those. Mark Shapiro (01:56): This was a really informative educational and quite frankly, motivating conversation that we had with Harry. And I think you’re going to really enjoy listening to him. Please do check out the archive of Explore The Space Podcast at www.explorethespaceshow.com, there’s over 200 episodes in there. So please take a look around, definitely subscribe rate, and review, Explore The Space on Apple podcasts or wherever you download your shows. I’m often asked what is the best way to help the show word of mouth and those ratings and reviews. So if you have a couple of seconds to spare to do that, I would really appreciate it. Definitely email me anytime Mark@explorethespaceshow.com and you can follow me on Twitter @ETSshow as well. Harry was a fantastic guest to speak with. This was a critical topic. It’s a great learning opportunity for me, I think will be as well for all of you. So without further ado, Harry Paul Harry, welcome to Explore The Space Podcast. I’m delighted you’re here. Harry Paul (02:50): Mark. Thanks so much for having me on. Mark Shapiro (02:52): I love that we have this opportunity because I say that you’re here, you’re about as far away from you and I could be in the continental United States, but we’re making it happen. So that’s good. The beauty of the internet that’s right. Good. So speaking of the beauty of the internet, this is where I found you. And this is where you, I think, found the podcast and that we kind of connected in that #MedTwitter environment. And one of the things that I love about it is it has taken the whole dynamic that quite honestly, when I was going through medical training, the, the aspect of hierarchy, the aspect of, you know, medical student leads to intern leads to resident leads to attending. It’s really dumped that out on its head because the fact that I’m an attending and you’re a medical student really has nothing to do with anything that you and I are going to talk about. Harry Paul (03:40): Yeah, I have, I’ve been thinking about that a lot and I love that you brought it up because I think the bi-directional learning is, is why I kind of got into medicine, right? Like I, I would never presume to, you know, even though I’m a second year medical student think that I know basically anything about medicine yet. And so having the space to think that, you know, there are things about, about disability, about equity, about the patient experience that I can share and that, you know, people who I look up to as mentors can can learn from is, is just incredibly cool. Mark Shapiro (04:19): I love that you just brought up by directional learning because I would assert that at this point in our lives and the short duration of time that we’ve known each other, I have learned 10 X more from you than you have learned from me. And this will evolve over time. And that’s great. But right now, as we sit, I am coming to you with the mindset that we bring to these episodes of look, there are opportunities for us to learn and for us to get better. And we need people who know these things and have expertise and comfort in discussing them. And that’s why you are here. And I love that you are already seeing that Harry Paul (04:55): If it’s been, it’s taken me some time to get into, but now I’m sort of leaning into it and finding, finding how to do that, right, because there’s really no rule book or guide book for advocacy. And, and so it’s, it’s its own little journey, you know, separately from my journey to medical school and, and, and through my life. Mark Shapiro (05:14): Start there then if there’s no guide book for advocacy, I mean, we talk about advocacy and explore the space, right? This has become a passion of mine. And I would agree that there’s no guidebook except chapter one is that you need to do it. You need to find what you want to advocate for and you have to do it. It does feel like for me, and this is where I have had the opportunity to learn a great deal from you is I think that you are done with chapter one, you’ve identified where you want to place your advocacy, energy and expertise. Is that a fair way to characterize where you are? Harry Paul (05:47): Yeah, I think so. I think so. I think, you know, I did not call myself disabled many years ago. You know, I had many surgeries as a child. I was in and out of the hospital. I dealt with things, you know, that came from that. Uh, but it wasn’t really, until I started thinking about working in medicine and then applying to medical school that I sort of recognize that this idea of, you know, probably if we went back to my application, I think I talked about like, you know, how important the conversations are, like how important understanding, you know, patient’s perspectives and you know, all that. And I think that was sort of an abstract way of talking about what I’ve now come to understand is disability and the varying levels of disability that patients and doctors and everyone experience. And then how that disability is, is a part of our, of everyone’s experience of the world. Even if they themselves are not disabled, because it really shapes is one of the things that shapes society and, and physical spaces and internet spaces. And so, you know, I’ve, I’ve identified this because I think it’s a word people are scared to talk about and don’t know really what it means. And so just having those conversations has been, uh, a beautiful experience for me over the last, I don’t know, six months to a year Mark Shapiro (07:19): I would submit that your characterization of most people’s understanding and comfort level with the word disability, what it means its implications and how to talk about it is at an early stage of development. Shall we say is an opportunity for improvement? I would say, you’re right. I would say, you’re absolutely right. And I will put myself right in that place. Right. I’m a mid career physician. I finished residency in 06. We didn’t have this in a curriculum. We talked about things that cause disability, we talk, right. That’s, that’s what we did. That’s what we continue to do. Right. We, we learn and study disease and, and, you know, physiology, pathophysiology, all these things long and short term outcomes and, and acute versus chronic. Like we are steeped in that and we get super good at it, but we don’t have that shared understanding when we use that term, what it means, how it can be a positive, how it can be a negative. So it feels like, again, we’re, we’re in that place where we’re all maybe looking for understanding, but boy w that’s the opportunity for improvement, I think is just an establishing that we don’t really all know what we’re all talking about yet, but the entities for sure there. Harry Paul (08:29): Yeah. And, and you bring up such a, such a pivotal point of, you know, that medicine, you know, people in medicine, doctors, et cetera, are, are around this all the time, all the time. That’s our job. Our understanding, I think, is, is based on the people who do understand disability or, or who think they do when the word is used. I oftentimes it either goes, I think it goes one or two places. I think it either goes to, okay, that means that you’re a wheelchair user, right. Because that’s what is on the handicap logo. That’s what, you know, happened after polio. You know, that’s what people think a disabled person looks like, or it goes to oftentimes within medicine, all you’re going to be on disability. Meaning, you know, we’re going to give you the paperwork so that you can be on disability and get paid and not work. Harry Paul (09:26): And in both of those things, like not only are they with doctors, but, but they also don’t really take into account that two people, if we could clone them right, with the same exact condition, the same exact abilities symptoms, et cetera, in two different environments, one can be disabled. And the other nodded, all right, our socioeconomic status, the job we do, how accessible the spaces we inhabit are all of that changes, what a person experiences and, and that then leads to whether they take on the disabled identity, right. Because that’s what disability is. It’s an identity that, you know, it’s, it’s different than other identities, you know, B whether it’s, you know, gender identity or racial identity in that it’s, it’s very, very fluid through time. So people can be disabled one minute. Um, and, and not the next or vice versa, you know, and even in different spaces, right? Like I just told you, you know, a few minutes ago, I didn’t call myself disabled before. Now I talk about, you know, being a disabled medical student all the time. And it’s, it’s not that something changed for me, it’s that, you know, I came into this and I understood this and, and where I was, and what I was doing was different. Mark Shapiro (10:51): Would you characterize the term or would you agree with the way I will characterize the term? So I don’t put you on the spot the way I would characterize the term disability in quotes, it feels loaded. It feels like when you put it out there, people automatically take a posture of sort of a defensive readiness there. Isn’t the sort of, you know, you mentioned disability paperwork, right. That will engender a response. You mentioned disability placards, again, will engender a response. I would characterize this as, as sort of, and again, there’s a spectrum here, but it’s loaded. It’s a loaded term. Harry Paul (11:31): Absolutely. Absolutely. And, and those, those ideas, I don’t think really help the people who we’re talking about when we use those terms. And they certainly don’t help the many, many disabled people who don’t fall into those categories or who don’t even call themselves disabled. Right. So when I, when I begin having these conversations with a lot of people, one of the first examples I like to go to is that there are very few people, if any, who call nearsightedness a disability, but that’s because we have glasses, right? And so if you can afford glasses and you have access to glasses, you don’t experience ill effects or barriers from that problem with your eyesight, right? If, if for a member of the dwarf community, if you are in spaces where everything is within reach the fact that you’re of a different height than another part of the population, doesn’t make that a disability, because it doesn’t hinder you. Harry Paul (12:47): The way that they spend changes though, is because even if you’re, even if you’re fully accommodated, but then there was stigma attached. So even if you can do everything, the people around you either think that you can’t or treat you differently or have implicit or explicit bias about you, or you have those biases internalized within yourself, then you, I think you can still be disabled. Even if that’s not in a way that, you know, we sh we, we would have to categorize it if we handled it differently in society. Andrew, I think that comes around to this whole notion of identifying as something like, if you identify as disabled, you’re calling attention to the stigma of the barriers, though, whatever that you face and saying, Hey, this is me. I’m here. It’s not a bad thing, but I do need X because of it. Mark Shapiro (13:47): So it’s a complex tapestry just, and hearing you and hearing you lay it all out, right? You lay these things out in parallel, but they’re in parallel, they’re in series, they’re intersecting, they’re up and down. And then we have another element that I learned from you recently in this article that you wrote in stat news around this concept of the, and it’s a term that you use in it. And I was struck by how frequently…
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