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“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 [email protected]

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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”

Links
Twitter: @_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 [email protected] 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 you use the term in the essay, hidden disabilities, walk us through it. Cause when I, again, I mean, it’s, it popped up, I want to say five or six times in a, in a relatively short essay unlock the term hidden disabilities for us.

Harry Paul (14:26):

Yeah. I’d love to, you know, I think there was this whole category of disabilities that we used to call and some people still call invisible disabilities, right. Things ranging from hearing loss, you know, where you wouldn’t know that someone around you has hearing loss or is deaf, unless they, they told you, or unless, you know, you saw them using sign language or, or whatever, down to what I sort of was talking about in the piece, which is these disabilities that it’s hard to ever see because they are really symptoms. Right? So in medical school, we learn a lot about symptoms and trying to classify them into different diseases and what they might point to so that we can diagnose and treat like the medical model of disability. Something like fatigue, something like nausea, vomiting, pain, these things can be experienced by anyone. And they can be for a short period of time.

Harry Paul (15:37):

Right. And people likely don’t think twice about it, but for some people when it’s not short-lived and when there was not a treatment and when there’s not an understanding of where that comes from, things get really messy really quickly because in medicine, there is an inherent bend towards, we have to diagnose it in order to treat it. And if we can’t do either of those things, then maybe it doesn’t exist. And it’s hard for me to say that, like, because I’m a medical student and I don’t want to blame, you know, medicine for something I’m, I’m certainly, you know, thrilled to be in medicine, but you just have to go online and look up, you know, a few different patient portals or patient communities to see that there are hundreds and hundreds of people who have been basically written off by medicine because they, we don’t know how to help them.

Harry Paul (16:42):

Right. And so I use the term hidden, first of all, because I think it’s really important for us to realize that these sorts of disabilities are not invisible in the sense that we can’t see them. It’s that you have to look to see them. Like you have to see the little grimness of someone in pain. The fact that someone who’s, you know, as trouble balancing will often walk closer to the wall so that they can grab hold. The fact that someone with hearing loss often, you know, will, or who is hearing impaired or deaf will preferentially turn towards one side, you know, if they have better hearing in a, in one of their ears. So these are things that like being, you know, a really astute clinician, once you join the disability community and start getting to know more disabled people, you start becoming a tuned to, but general society unfortunately does not recognize these things.

Harry Paul (17:41):

And when we don’t recognize them, we don’t support them and we don’t accommodate them. Right. So within schools, businesses, it’s really hard to ask for accommodations or receive accommodations for something like fatigue, right? Oh, you’re tired. I’m sorry to hear that. Do you want some coffee? Like that’s not, that’s not what fatigue is. Right. And when we talk about something like chronic fatigue syndrome, right. And, and it’s hard to know what the answer is there right too often, we say, Oh, well, you can’t work. Okay. Let’s, you know, let’s get you on “disability” and you’ll get paid. And, and the fact of the matter is many, many disabled people who are on disability want nothing more than to work. Right. They, they miss having that aspect of their lives, not to say that the choice to go on disability, isn’t a valid one for some people, but it’s about that choice.

Harry Paul (18:38):

It’s about, you know, being able to do with your life, what, what you want. And so I wrote this article in the context of, of COVID-19 because, you know, as someone who kind of sorta looks disabled, but no one really knows what my thing is or what it’s from or what causes it or what it does to me. And, you know, I do find, but I look different. And what does that mean? I had a really hard time explaining to people that, you know, me being short and me being a little funny shaped in the torso is because of scoliosis and that scoliosis constricts my lungs and that constriction of my lungs means that if I get sick with, you know, a respiratory infection, it will be harder for me to fight. That doesn’t mean I’m immunocompromised, right? Because even within COVID and talking about risk, we often go to, we need to protect older adults and we need to protect the immunocompromised, but that’s what people say in their guidelines and on TV and whatever.

Harry Paul (19:47):

And immunocompromised means something specific, right. We know what that means in medicine, right? You’re, you’re more likely to catch infections. You’re more likely to transmit infections because of a deficiency in your immune system or an insult, you know, from something like chemotherapy. I am at the same risk of getting an infection as someone, you know, as anyone else without an immune compromise. But it’s what happens that if I get that, and so these are two different kinds of risks. Why? Because I am not a risk to the patients that I go and see, but when I’m hanging out with my friends or going for a walk, I need everyone around me to be wearing masks, if not more, to be keeping their distance to, I can’t, you know, do anything inside, even if it’s, you know, just a couple of people, you know, these, all these things we’ve been talking about have in, in COVID in the world at large, have started to affect me in ways that my disability never used to.

Harry Paul (20:52):

I used to deal with for lesser years, right. The fact that I’m short. And so I need to be able to reach things. And that was basically the main symptom that I still felt from my disability. Right. As a kid, obviously there were, there were tons of things. I was, you know, a wheelchair user for a while. There was a lot of pain, you know, et cetera. But this is what I mean about context right now, when COVID-19 happened. And I had to start thinking about this risk, trying to explain that whisk, when people don’t understand it is really hard. And even the effort to try to call attention to that, if someone is not already thinking about it is even harder, right? And so that’s why I wrote this article because we need to become aware of the spectrum of disabilities that’s all around us.

Harry Paul (21:48):

So that the people who are disabled themselves don’t have to do as much teaching when we’re going on rounds in the hospital. We shouldn’t just by default say sprint, you know, sprint up the stairs to the next floor, because there can be someone with, you know, Charcot Marie Tooth who might not look disabled. But if they sprint up three flights of stairs, they’re going to get really weak and, you know, can, can fall and have an accident. And, and we don’t want to stigmatize them by making them say that out loud, where they might not want to, to explain why they can’t let up the stairs or why they are going to take the elevator. And so then we get into these complex, complex interpersonal and societal relationships where we started making value judgments. You know, we tell someone, well, it’s healthy to run up the stairs. Well, it’s healthy to run up the stairs for some people it’s not healthy to fall on your head, right? Like they are there. We all have different bodies. We all have different minds. And so I decided to use the term hidden, um, because it’s been talked about more and more within the disability community that, you know, the onus has to be on society to start looking. And when we call it invisible, we make it okay not to look.

Mark Shapiro (23:17):

So when we start from this place, that of this is a societal problem, I also will note that you identify some very striking examples of what can happen inside a hospital when we’re making rounds. Not that it can’t happen anywhere else, but obviously that example resonates. So then let’s get to that mindset of how do we start to make this better? How do we start to improve? How do we build a toolbox to at least begin to talk about it? Where are the places would like to see us? And when I say us, I mean our profession or shared profession, and maybe let’s just take it into the hospital. Let’s just start there. When we’re rounding in the hospital together, where are the places you would like to see us begin to move on the journey of progress?

Harry Paul (24:01):

Oh, this is, I mean, this is the million dollar question, right?

Mark Shapiro (24:06):

It’s a million dollar question for you.

Harry Paul (24:09):

I think. So. I think all the changes we have to make, but I can run through like a really quick list, right? Like we need to check that the doors that are supposed to be, you know, accessible actually are, we need to make sure that there’s braille signage on all the signs in the hallways and all the room noise. We need to make sure that our electronic medical records are accessible. If somebody is, is vision impaired and needs to increase the font, or if they are, you know, they need to use a screen reader that, you know, reads it out loud to them. We need to, you know, know how to access, sign language. We need to know when the phone rings and we hear a click that that’s actually someone trying to use adaptive technology to make a phone call. And if we just hang up on them, then we’re later going to say, well, we don’t need to do the acts because we don’t have any disease, any deaf patients. Well, no, you’re just hanging up on all your deaf patients before they have a chance to get connected, right? So like all of these, there are all of these things and I can keep on going, but they all come back to do we understand the spectrum of disabilities that exist, what those disabilities are like and what value is exist to keep disabled people out of these spaces or to make their experience worse in the space.

Mark Shapiro (25:42):

So then let me ask you the question in a different way. What does leadership in this work look like? Acknowledging that there is probably a, a lengthy list of boxes. We need to check to make sure the work is being done. Right. What does leadership in this space look like?

Harry Paul (25:58):

Couple of key things. I think one support and amplify the voices of disabled leaders in medicine who have been doing this work, especially those with other marginalized or minoritized identities gather the data, right? When every forum in, in school, in clinical trials, in employment that asks about race and gender and socioeconomic status. I can’t remember the last time that I saw, do you identify as disabled on one of those forums? I drove, we’re not asking it. We’re not going to know it’s there. It means that our spaces, academia need to be talking about this. When we talk about social determinants of health, when we talk about oppression, right? Because the intersection of racism and ableism has a long, long history. And it’s going to be really hard to, to fully get rid of one without getting rid of the other, you know, just to call out an example, not that not that disability doesn’t intersect with other identities, but, but the intersection of blackness and disability, especially when we start thinking about prisons and about our on house population is, is something we are not doing anywhere near enough. And it means that kind of to sum up that people just need to talk about disability. We dance around the edges so often, but it must be

Mark Shapiro (27:41):

Exhausting. I agree with you. I, I probably do it myself cause that’s just, we’re so acculturated to that, it must be really exhausting being on the other side of it.

Harry Paul (27:52):

It is. And I, and I, I definitely have had times over the last year or so where I have gotten incredibly frustrated, but I also, I derive so much joy and, and, and pleasure from, from doing this work with the people that, that I am with because the community is, is a fantastic one. And we have also, I mean, I’ll, I try to, I try to give credit where credit is due. And even in the last year or two, I’ve seen that so many more people are, are beginning to understand this when I talk about it, but I used to get a lot of blank stares. Yeah. Now I get, Oh yeah. I, I, yeah, you’re right.

Mark Shapiro (28:42):

So that may be, hopefully that’s indicative of the needle moving just a little bit.

Harry Paul (28:46):

Yeah. Now we need to go the next app of me walking into a room and hearing someone else talking about it. Right. That’s the, that’s kind of the goal.

Mark Shapiro (28:56):

There’s another term that I would like to ask for your insight around, because I think I understand it, but I’m not totally sure. My understanding definitely get to the point where it’s something that I think we want to be mindful of, if not try to avoid entirely. And that’s the concept, especially on social media of ableism, but I think it would be helpful just again, making sure that we’re not assuming knowledge or making sure that we have shared understanding, give us, give us your understanding of what that term ableism means.

Harry Paul (29:35):

Absolutely. So this is, this is also a hard question and I, I do not presume to have, you know, definitive knowledge or control of the definition. Sure. The way that I think about ableism is, is I think of it as the systems that we have built in our world that are built by and for abled people, right? So people without disabilities have the body or mind, and that’s important because it means two things. It means one that the values are there. We don’t put all text on our images online. We don’t have ramps in our buildings or elevators. We, you know, don’t caption our lecturers and videos, all that sort of stuff. And then it also means that when we say things, whether in writing and social media, in conversation, that act as if disabled people aren’t there. Right? So that means making jokes about a patient or saying something about a patient’s, uh, you know, poor outcome, you know, likely poor outcome without recognizing that one of the students or residents or doctors you’re talking to could have that same likelihood of poor outcome. Like, so it’s within medicine. It’s this belief that, well, if we’re in medicine, everyone around us must be able to, and the more you start to look at it, the more you start to think about it. And this happens for me all the time. I start seeing it in places I never ever would before. Right. Like I was talking to a friend just last night that, um, who’s an autistic med student. And she was saying that she did, uh, an OSCE, you know, and observed, standardized, clinical exam.

Harry Paul (31:41):

And yeah, one of the things on, on her evaluation was doesn’t make eye contact. Right? We have this inherent assumption that making eye contact is part of being a good physician and providing good patient care for someone who’s autistic, that can be hard. And for a patient who’s autistic, that can be hard. And so when we make that, the standard we’re making it harder for both autistic patients and autistic physicians when we don’t need to be right. Why, why do we need to be granular, right. Like that. Like, why can’t it just be about, we need to create really good spaces to care for our patients in whatever way that means for some patients that’s going to be eye contact for some patients that’s going to be please not force eye contact upon them. Right.

Mark Shapiro (32:42):

So a level of sophistication that would then allow for a more dynamic, sensitive interaction.

Harry Paul (32:49):

Exactly. And I brought that example up because it’s, you know what, I just, you know, it was last night, but I think that there are so many examples. I mean, I got, I got a text from a friend at another medical school, uh, you know, just a few weeks ago that she was in ethics class and her professor said something like, you know, and I’m paraphrasing here. Um, you know, if I, if I had to be wheelchair bound, I would kill myself. Right. And so then, then we look at why there are very few doctors who use wheelchairs, first of all, but wheelchair bound is so do arbitrary. And then there’s assumption that being a wheelchair user is, is something bad. Something that, you know, you, no one would walk. Right. I think what we need to get to is I would, if I was a wheelchair user, I would hate to have the people around me not recognize what things I needed to make my life, you know, to give me the same equity in life as, as other people.

Harry Paul (33:57):

Right. And they are, there are dozens and dozens of examples of this. I could go on and on. But I think that that Abel is in, is this is three parts to sum up one, the belief that being disabled is bad to the fact that our society and our systems are built for people without disabilities. And then three, that when we’re talking about these things, we sort of have a tendency to Gaslight disabled people and say, well, you know, you’re overreacting, or that’s not what I meant, or it was a joke or whatever else we say to excuse away. The fact that our society, our world is not built for disabled people, both in our interactions and our spaces. And it’s not enough to just say, Oh, sorry, that was offensive. Right? It’s you have to start thinking about what that means before you say it. And this isn’t, this isn’t politically correct stuff. This isn’t cancelled culture. This isn’t any of that. Those things are words that have been created by people who don’t like thinking about other people’s emotions to excuse a way their own lack of thinking about those emotions, right? These things matter because they matter to someone and if they matter to someone, they should matter to you too.

Mark Shapiro (35:26):

I think that that’s a great way to call to action around this. And I think what I’m taking away from this as our first call to action is for us just to understand the words that we do see flying around and that sometimes trend on social media and are making their way into public discourse that we at least have a beginning of shared understanding of what they mean. And then for those of us who work in healthcare to again, understand what they mean in the context of providing care and being part of a team and leading teams and recruiting it’s, it’s gonna be a lengthy and long challenge because we have multiple generations of physicians and healthcare professionals that have, I might even think at best, a limited or moderate amount of education around this, but most probably have very little to none. And that is a sturdy challenge for us as we go forward.

Harry Paul (36:22):

Yeah. And I, on a, on a sort of positive note, I think that a lot of this, the groundwork is already there for, right. Yeah. Yeah. I got really, really good clinicians, really good people already know that understanding the context of someone’s life is important. They already know that getting at what is troubling, someone is important and working to alleviate those things. So, so I think there are a lot of people who are helping out on providing good care to disabled patients and to their disabled colleagues without knowing it. What I think is important to talk about that says, because it’s not an isolated incident, right? So in order to get at the systemic change, we need to go from, this is the really nice thing I do for my patient who’s in a wheelchair to, well, what are we missing? And there was never, ever been a more important time for us to be talking about this than right now, because you know, health is quite literally on the line in this election.

Harry Paul (37:44):

Right? And, and I bring up ableism not to make any political statements, but because whenever we’re talking about a candidate or about a policy, just as, it’s not enough to say, Oh, that was meant as a joke. It’s also not enough to say, Oh, you know, this is really helpful for some, you know, we’re sorry that it leaves out disabled people, right? We, we can’t, we cannot keep writing off disabled people. What disabled people need, what things are going to be really harmful to disabled people. It’s if we want to move towards a more, just a more equitable, a better world for everyone, we have to talk about this and, and it’s not selfish, a more accessible world. It has been shown in the research is better for everyone. When we start putting elevators into buildings, people who are fully able bodied seal really appreciate that when their arms are full of groceries, right. People who are trying to watch a continuing medical education credit on the subway, you know, when we used to take the subway, really appreciate if there are captions on that, if it’s hard to hear, you know, without, without any hearing impairment, right? So accessibility is better for everyone. And I just wished that people would start seeing that rather than as you put it, taking that defensive stance of, well, we’ll provide this if you know, we, you reach out, uh, well, you know, we’re not sure how many people it would help.

Mark Shapiro (39:28):

I think that you’ve provided the right call to action with that as well. And I will also say, and one of the things that I’ve really enjoyed and learned a great deal from is you also put the information out there for us to learn from and get better. We’re going to have a variety of Twitter threads and other links that you’ve created that’ll be in our show notes of how to use alt texts, which I learned from you and a variety of other really powerful tools. Those will all be in the show notes though. And where else though, do you like to direct people who want to learn more about this and where do people find you if they want to follow you?

Harry Paul (40:02):

Yeah. So I do most of my disability advocacy work on Twitter. It’s been such a fun community to become a part of both, you know, in the medicine and diagnostic reasoning and, and science world. And mostly in, in disability, which is what I post about. I’m @_harrypaul_. And I, I think that more than just, you know, me, there’s sort of a two part thing, right? Look up, read about, visit the websites. The Twitter handles the books and, and, and, and TV and movies about, and by disabled people, like that’s the first thing, right? Read our actual words, just like with any other movement in an equity or social justice, right. Listened to the people actually affected by it. Especially within disability, you will find that there are many people who talk about disability, who have no idea what they are talking about because they are not disabled themselves.

Harry Paul (41:01):

Right? So they, they, they make these movements to say, you know, things like, don’t let your disability define you. What if your disability does define you, right. Why not work to make that define you in a good way? Why not work to recognize that it is defined for you by the society we live in than to try to erase it by saying, don’t let it define you. You know? And so I think, I think be very wary when you read or listen things about disability and think about what is the angle of the person who’s saying those things. And then beyond sort of that, you know, reading homework, like everyone listening or reading this show after knows disabled people. I guarantee it a hundred percent. But if you don’t talk to them about it, if you don’t make your own existence, one that seems open to, to hear from those people. You’re not going to know it. And so in your own lives, make space to talk about that and you will learn a tremendous amount.

Mark Shapiro (42:09):

Here’s the thing I like about you being visible, too. And like you said, people who have listened to this or read it, guarantee they know someone. Yeah. Cause they know you now. And I think that that’s exciting. And so obviously I, I w I’ve learned a tremendous amount from you. I found you through Twitter. I would encourage everyone else to access the stuff that you’re doing and the people that your thread directs us to as well. Because look, we are starting out on this road. It is going to take some time, but we all know someone now. And I think for a lot of those people, the first one that might come to mind is you. And I would submit that that is great. It’s a challenge, but it’s great. And I’m grateful to you that you came on the show to talk about it, that you are as open and transparent with your writing and with your work on social media, as you are down the road, we’ll have you back and we can reconvene and see where progress has been made and see what impacts policy making and elections are having on this work.

Mark Shapiro (43:05):

But Harry, thank you very much. I really enjoyed this.

Harry Paul (43:08):

It’s been an absolute pleasure. I love the show. Great to talk to you as always. And thanks everyone for tuning in, and don’t hesitate to reach out if there’s any questions I can answer, or if you just want to chat, I love talking to people.

Mark Shapiro (43:22):

I can confirm he, you are available and you are helpful for all those things, man. Thank you so much.

Harry Paul (43:28):

Have a good one. Take care.

Mark Shapiro (43:30):

My thanks once again, to Harry for joining us on this episode of Explore The Space Podcast and definitely check out the links that he has shared with us there in the show notes, please take a look, some great opportunities for learning and definitely check out his article in stat news, which is also linked in the show notes. Thank you to Laurie Baedke and Creighton University for sponsoring this episode of Explore The Space Podcast. Learn more about Creighton’s executive MBA and executive fellowship programs at www.creighton.edu/CHEE. Thanks to you so much for listening to this episode as well. Really appreciate you taking the time. We will be back soon with more great content in the meantime, make sure to wash your hands, wear your mask, maintain physical distancing, get registered, make your voting plan and get ready to vote or vote early if you have the opportunity. We will see you soon. Bye bye.

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