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“Neurodiversity and access is the next frontier of our DEI conversations.” –Mel Houser
In this episode of the podcast, we welcome medical student Elizabeth “Biz” Barker, and Dr. Melissa Houser, who is also the executive director of the non-profit All Brains Belong VT. Dr. Houser also sits on the CDCI Community Advisory Council.
Both physicians identify as having a disability, and Dr. Houser also has a family member with a disability. They’re here to talk about ableism in the medical system, and how it begins in medical school: how we expect learners to perform as they learn medicine has a huge impact on keeping ableism going in healthcare.
A full transcript of the episode appears below.
Biz: Would you like to start?
Mel: Sure! I can do that. So I am Mel Hauser. I use she/they pronouns. I am an autistic family physician with a clinical focus on providing primary care to neurodivergent patients across the lifespan. I’m the executive director of All Brains Belong Vermont, which is a nonprofit organization in Montpelier that uses universal design principles to provide healthcare, neurodiversity related education and social connection opportunities for kids and adults. And I guess I’ll also mention that I am autistic, ADHD, dyspraxic, dyslexic, dyscalculic.
And I did not learn any of these things about myself until I was 37 years old.
So it’s been a journey of like rewriting the narrative of my life through that lens. And, and learn learning about, you know, the things, the things that make me, me the things that allow me to do my work in, you know, meaningful ways and the things that are like really, really hard.
Biz: Yes. Thank you so much, Mel. I appreciate it. Did you want to give a self-description?
Mel: Oh yeah. Thank you for supporting my working memory. I’m a white person with short brown hair and I’m wearing a light aqua shirt. And I have a gray pillow behind me, and I’m at the corner of a wall that is copper and aqua.
Biz: Amazing. Thank you. So well, I’m Elizabeth Barker. I’m a fourth year medical student at the University of Vermont. I am dyslexic, which I was formally diagnosed with when I was in eighth grade, but had always known I was a bit different. Now I considered myself a “neurolurker”, discovering all the other ways that my brain does not fit the typical mold, but is still beautiful in its own ways. Other than that, I’m hoping to go into family medicine primary care. I’m applying into residency all over the nation, so still very much so in the process of becoming a doctor, but hopeful for my future. And I am a white female who uses, she/her pronouns. Forgot to mention that brownish, blondish hair, and a very orange room <laugh> wearing a white shirt. All right. Do we wanna jump into our first question?
Mel: Yeah. So, you know, we were thinking about the medical education process and and, and, and how, you know, our experience even, you know, separated by, you know, over a decade really the, the, there are some things that are missing.
Biz: Mm-Hmm. <Affirmative>. Yeah. So a bit of context. Mia, Mel first met when she was my advisor during my first year of medical school during a class called Professionalism, what was the C?
Mel: Communication.
Biz: Communication and Reflection, which was a really phenomenal medical school class that during our first year, second year, and part of our third year brought small groups of medical students together and kind of took time to reflect on the many other various aspects of the world in general that affect medicine.
We looked at a lot of social determinants of health; lots of other popular news articles that kind of were intertwined with medicine and healthcare in general. And this was one of the places that me and Mel first had a presentation on divergent aspects of healthcare, which was really fascinating but definitely was one of the few parts of my medical school education that really touched on it.
So as me and Mel went through our years of healthcare, Mel was brave enough to jump out and really start taking this on. And I was really lucky to be able to follow her and also learn healthcare from the kind of general typical model, but also other ways that it could be viewed. Other ways that it can be improved upon to support all people.
Mel: Oh, that’s so beautifully said. I’ll also mention that I did my medical school training at UVM also and I really do think that I got excellent training in health equity, cultural competency, like, just like, like, like that lens that in a way that perhaps was, was a bit ahead of its time.
Having that diversity, equity, and inclusion lens you know, has been a, a value of UVM for a really long time. And, and, and I would also say that neurodiversity and access are the next frontier of the DEI [diversity, equity, and inclusion] conversations. I think that that’s where I’d like to see, see things going because I think that there are you know, everyday life practices for, for, for, for patients experiences and for physicians experiences that, that relate to neurodiversity and access that are unrecognized.
Biz: Absolutely. For sure. All right. What was our first question that we wanted to jump into?
Mel: Yeah, so, so you know, the, the, when we think about like, gaps in medical education you know it’s, it’s tempting to say to say that, but like, where do we start?
Biz: Yeah, for sure. Well, I think we should start with maybe recognizing all the really amazing parts that medical education does reach upon what you were saying. UVM does seem a bit, a bit before its time and does reach past the basic model of medicine to include a lot of other aspects of healthcare.
But where it’s lacking is also very evident.
I think that for me, one of the biggest things that really jumped out to me when being in the typical medical school education system was a lot of this mix of imposter syndrome and the realities of not knowing what we don’t know. There was a lot of emphasis on evidence-based medicine in our first couple years and throughout medicine, and I find this extremely important.
But it also happened to teach us to, in medicine, kind of approach a lot of things with skepticism if there isn’t previously done data and science and evidence to back up practices so on, on top of imposter syndrome. And this idea of only being able to do what we have evidence-based medicine for can kind of sometimes paint medical providers into corners, is what I’ve seen.
Mel: Yeah. And like, just to say say, say a little bit for, for folks who don’t or maybe are not familiar with that imposter syndrome term. So, you know, just like the, the, the phenomenon of somebody doubting their skills, talents, accomplishments or like a, like a, like a internalized feel, feel feeling of like you know, the fear of being exposed as like incompetent. Like, oh, they’re gonna find out that, like, I don’t really know what I’m doing. So I mean, this is certainly not unique to, to my experience. To your experience. And this is pretty common as you know, described to me by colleagues in all, in all kinds of professions.
But, but very common in healthcare training is like the vibe of, you know you know, explicitly or, or implicitly being told, you know, “Fake it till you make it!” Like that I think drives imposter syndrome. It’s mm-hmm. <Affirmative> not healthy.
It’s actually OK to not know something and to authentically show up and say, “I need help. I don’t understand this. I actually have no idea.” Like, that’s like normal. It’s like so profoundly normal.
Biz: Absolutely. And a lot of the culture of medicine, is the imposter syndrome is almost taught to be embraced in a way to kind of, like you said, fake it till you make it. But I think that, like you said, it’s, it’s not healthy. It leads to people trying to compensate in ways that don’t benefit them and long term aren’t sustainable.
And I think it also leads to a lot of people not being able to accept other aspects of other patients.
So in medicine, on top of the imposter syndrome, I feel like we’re taught to be superhuman and to ignore all the things that we can’t do perfectly or ignore our health and try to be something greater than we are. Which I think that also leads to doctors not seeing patients in the full ways that they can.
Mel: That’s a really good point. You know, I think that there’s so much of the hidden curriculum in medical education. So there’s, you know, from, from the physician lens of like, you know my, my duty, my calling is this, and, and, and there’s a part of that, but that it’s, it’s not a zero sum game.
So, you know you, you, you, you, you are a human and you have needs, you have, you have access needs, the thing, you know, access needs being, you know, anything anybody needs to fully and meaningfully show up in life.
And, and, you know, the, the, the culture of, you know, don’t, you know, never take a sick day and, you know you know, put the patient first and like, is that maybe an overgeneralized cultural concept?
Like does put the patient first? Like, like, can you do that without ignoring your own access needs?
Biz: Absolutely. Exactly. And then with that, you just start to not even consider it that there are access needs when we’re told to be one way and perfect and human, non-human, just all the time, then we don’t accept the ways that we are human and the way that lots of people are human, and we do have different access needs. And if doctors can show up as their authentic selves that need accommodations and that need different access needs, then our patients can show up themselves as well.
Mel: Yeah. You know, I think that’s a really good point. When I think about some of the common practices in medical education, not just in mine, in yours, but you know, my mentors and my colleagues who train in all different kind of systems, it’s, it’s just, I think pretty common. Like, for example, the concept of pimping where you are put on the spot in front of asked direct questions I mean, my experience was that that was really stressful and uncomfortable and painful and interfered with my learning in those circumstances. Mm-Hmm. <affirmative> both like, you know, both as the direct recipient of this practice or of like watching my colleagues being humiliated and dissipating my future humiliation. Like all of that was just, you know, unnecessary for my learning experience. But I do remember the, you know, what I’ll call like a brain rule, you know, the assumptions, the cultural assumptions that you get kind of indoctrinated and brainwashed into as opposed to like, you know, true laws of physics like, or true world rule, like the brain rule of like, well, you know that’s, that helps brains learn. You know, brains learn under stress, brains under, under fire. Yeah. I mean, maybe, maybe some brains do. Mine doesn’t.
Biz: Exactly.
Mel: And, and in fact, we all have different grains and like some brains may benefit from that concept. Some brains do not. And if we really want to be providing environments that are inclusive of all brains, we may not wanna have default practices.
Biz: Absolutely. When there’s only one way of doing something, it leads to othering,
Mel: Which Right. Because if, if, if, if, if you are, you know, oh brains learn under fire and humiliation and my brain doesn’t, there must be something wrong with me. Air go fast tracked imposter syndrome.
Biz: Exactly. And in the same way that we don’t believe there should be one way to access healthcare, because everybody has a different brain and needs a different way to access healthcare, I think we both agree that medical school needs multiple different ways to demonstrate the same medical knowledge and skillset that everybody possesses in just different ways.
Mel: Absolutely. and so when there is, for example you know you, you, you must demonstrate your knowledge via an like an, an oral boards if you have the kind of brain that organizes information best visually but you, you didn’t have a choice. If you <laugh>, I remember as a medical student on rounds, again, these like, you know, high pressure verbal pre anyway you know, you shouldn’t need your notes on rounds because if you need your notes, that means you don’t know your patience. Mm-Hmm. <affirmative>, and I’m like, oh my God. Maybe may, maybe I’m not really cut out for this because turns out I have working memory differences mm-hmm. <Affirmative> where the visual support actually gets mima. That’s like what the point of a to-do list is, or keeping a calendar. It’s the same neurologic process, but it is like overly glorified to quote, not need the accommodation which is, you know an example of ableism
Biz: Mm-Hmm. <Affirmative>. Exactly.
Mel: Name the thing.
Biz: Name the thing. Exactly. And the same kind of brain rule applies to the way that we think about ourselves, then turns into how we think about our patients. So if our brain rule is that we don’t, we don’t need a visual aid to get through our presentation, then we might have the brain rule that patients don’t need a visual aid to get through their patient visit. So if we can accept that we all have our own access needs and we all need our own supports, then it’s easier to accept that patients have their own access needs and need access to their own supports. And just creating that brain rule that accepts that we all have different needs.
Mel: Right. Cause that’s a world rule. It’s actually a thing that we all have different brains that have different needs.
Biz: Exactly. So by having negative brain rules in medical school and having negative brain rules about the way that we need to show up changes the way that we think our patients need to show up.
Mel: Right. And I, I, you know, I i I, I do think that there was an acknowledgement of the hidden curriculum in medical education. Like, I remember even that being talked about as a trainee, and it is true. It’s just that there’s, there’s even more threads of the hidden curriculum that are unhelpful. You know, so for, for example you know, I, I, I, I remember you know as a, as a trainee, you know, my, my clinical supervisors make might make some comment like, oh the patient with the list as though there were something stigmatizing something negative about being, like, having the kind of brain that organizes your information in writing and brings with you a visual support or up that patient has a positive cell phone sign and implying that like, you know, they must not actually be in the amount of pain that they say they are because there is one correct way to look when you’re in pain, which is of course not a thing. Mm-Hmm. <affirmative>. But there’s like so much of that, those like just the, the attitudes, the attitudes of being judged and dismissed. And so like, you know, not only is this not helpful, but but it hurts patients.
Biz: Yeah. Cuz patients can tell when they’re being dismissed and that doesn’t just lead to a negative patient interaction in that moment, but a further distress between patients and the medical system as a whole.
Mel: Totally. I’m really glad you brought that up. You know, there is extensive literature that neurodivergent patients experience barriers to accessing healthcare. And, and, and, and in addition to environmental barriers, sensory processing, you know the, the, the defaults of, you know, that, you know, you gotta pick up a phone to make a p you know, make an appointment. You gotta fill out the 20 page packet to become a new patient. Like, besides that stuff, it, there’s actually literature that patients perceive that healthcare providers have unhelpful attitudes. They, that like patients feel it, you know, feel it when, when they’re being viewed through a, a, a, a, a deficit-based lens.
Biz: Absolutely. And a lot of healthcare does that views a lot of healthcare through a deficit-based lens versus a social model based lens. Which
Mel: Yeah. Can you say more about like the medical model of disability versus the social model of disability?
Biz: Absolutely. So the medical model of disability kind of puts the deficit in the person as in the person is deficient. The social, social based model looks at the person with the disability as whole in themselves and not their environment is deficient to meet their needs. And I think that in medical school, we’re taught constantly about abnormalities from the baseline that is the study of medicine, but we seem to pathologize anything that’s not the typical, the norm, the, the middle of the bell curve. So when we approach things that the social-based model it doesn’t lead to the additional inter internal conflict, the internal shame that is put on people with a quote unquote disability, it puts the shame and the othering onto the person versus the need for accommodations and the need for our society to change to accept them as they are.
Mel: That is so well said. You know, I think that when it comes to visible disabilities the concept of the social model is is, is is is quite clear. You know, if I am a wheelchair user and I approach a building that has a ramp, I am going to have less disability than if I approach a building that does not have a ramp. And when it comes to invisible disability though, like, I mean, I’m not a, I’m, I’m, I’m, I’m, I’m, I’m gonna acknowledge there are things about my disability that, that make things hard, make things really hard, and the amount of disability I’m gonna experience is going to be relative to how accessible my environment is.
Biz: Absolutely. The same way that for me as a medical student, when we have to write out our notes, my typing in my writing is a bit slower because of my dyslexia, and it’s harder for me to process my thoughts and get them down onto paper when I’m typing in, in a kind of loud workroom. But being able to use dictation or text to speech softwares allow me to talk my notes out which allows me to do them much more efficiently. So in a way, it’s, it’s allowing me to do the same thing, but util needing less of my energy to change how I function so that I can get the same task done.
Mel: Right. And so, you know, all brains have a finite capacity of, of, of, of bandwidth. And if you’re gonna spend all your bandwidth doing the thing in a way that doesn’t work for your brain, you’re not gonna have a whole lot of left in your bandwidth budget. And I think that, you know, universal design offering flexible, multimodal ways of engagement benefits everybody. So there are people you know, in your example of using speech to text assistive tech and other assistive technology, I, I, I think there are, there are people even who, you know, are, have typically developing brains who benefit from that shared just having like multiple choices. It’s not like this is the default and okay, you’ve disclosed the disability now, now you get the accommodation that you, you know, often unfortunately have to work, send like a whole bunch of your bandwidth budget to even active.
Biz: Yeah, exactly. So for example, yeah, using the dragon in the hospital is much easier for me than using another form of accommodation like text to speech because it’s already set up for most everyone. So instead of it having to be set up individually, just for me, it being there for everyone is like the wheelchair ramp just being there for everyone.
Mel: Right. And if you have the kind of brain for whom, like using Dragon is hard, like what happens, you can type, like there’s multiple choices. And when you think through like the stages of the workflow of like, you know, anytime there’s like the one choice and there’s, you know, like that, that’s not neuro inclusive
Biz: Mm-Hmm. <Affirmative>. Exactly.
Mel: So, you know, biz, we’ve, you know, we, we’ve, we’ve both seen patients who are dissatisfied with their healthcare experiences. And, and you know, as we connect that to some of some of the elements of the hidden curriculum that’s part of healthcare system culture you know, do you think there, there’s there’s anything about the medical education process that may be contributing to that?
Biz: Definitely, yeah. That a, that brings me back to kind of what we were talking about earlier with imposter syndrome. The idea that you are superhuman and you know everything, even if you don’t feel like you know everything, the kind of the fake it till you make it idea that you’re never wrong idea. I think that this sets a lot of people up throughout medicine to kind of think they know everything, even though we are all constantly learning or getting really attached the idea of something they heard once. And then not knowing more and kind of sticking to that one thing they, they were taught previously, like a brain rule, a brain rule that they were taught and then was never challenged by anything else in education. I think this can lead to a lot of patients presenting with symptoms that don’t fit a typical illness script that we’re taught.
And if we haven’t seen it before and doctors haven’t identified it in the literature it’s very easy for doctor to say something along the lines of, oh, that’s not a thing. Which as a patient and a provider I know, can be one of the most frustrating things to hear because it kind of gaslights patients and makes them feel that not they’re not being heard, they’re not being seen, and that what’s bothering them isn’t being addressed. And when we don’t feel like we have all the answers and we don’t feel like we’ve seen the science and evidence on it it kind of leads to doctors brushing over things because they feel sometimes that they need to have all the answers.
Mel: Right. Because as trainees we’re told that a lot of times, either, you know, explicitly or implicitly fake it till you make it, is implying that you’re not allowed to say you don’t know mm-hmm. <Affirmative>, and, you know, like in, in, in, in, in full transparency, you know, my my experience is that when you tell a patient, I don’t know, let’s learn this together, they love it, you know, they, they appreciate it. Like be a real person. In, in, you know, as, as, as someone who, you know, I run, I, I I I, I run a healthcare organization that, you know, has a, you know, a different, like a totally different model. You know, it’s, it’s, it’s the, the people who come here are generally those whose needs were not met by the traditional healthcare system and what they like. So, so basically most times I see new patients, I am hearing stories of their experience of, you know, feeling like they weren’t listened to or they were, they were dismissed or, or, and, and, and, and the stories they tell, you know, like I can zoom out and say, you know, probably the, the, the, the healthcare provider didn’t maybe really say that in way, but doesn’t even matter because their experience, like the, what they took away, how they remember feeling in those encounters, that’s what matters.
And that’s the stuff people are talking about. And so it’s like, it’s like what anything that’s gonna, you know, anything you’re gonna communicate thinking about what is, how is it potentially going to be received by that patient?
Biz: Absolutely. Absolutely.
Mel: So as we wrap up biz, like, do you, what do you, what do you think should be our, our take home points?
Biz: Yeah, definitely. I think that a big thing medical school is so much information, <laugh> always, and all the time and always changing that maybe it’s not so much how and what we teach or not necessarily what we teach and what we learn about directly versus how we’re taught to approach problems and how we’re taught to approach the unknown. Especially things that we haven’t been taught or things that maybe necessarily go against what we were taught how to approach those questions in patients with openness and compassion and curiosity.
Mel: I love that. So, you know, fake it till you make it is not good for health, physician health or patient health. Maybe we could summarize that.
Biz: Absolutely.
Mel: So say one, you know, acknowledge when you don’t know something. Exactly. and, and, and in order to learn about that thing, it may involve looking at other fields to help answer those questions.
Biz: Mm-Hmm. <affirmative>. Yeah. Absolutely. Is there any other main
Mel: Take? Yeah, I’d say like, my, my, my, my main second point is just like neurodiversity and access is the next frontier of the d e i conversations. And you know, not, not, not just to be able to offer neuro culturally competent healthcare to our patients, but taking a look at the access needs of our neurodivergent learners, most of whom have no idea that they are neurodivergent
Biz: Mm-hm. And that will also help with the immense burnout we’ve been seeing in medicine. So again, it’s not, we’re not here just to help our patients, but to help our medical colleagues as well.
Mel: Exactly. Because, you know, it is an epidemic of physician burnout, physician suicide, I mean, this is real. Right. So, so, and looking at the systemic issues that are incompatible with neural cultural competence.
Biz: Absolutely.
Mel: All right. Well thanks biz. It’s been nice talking with you.
Biz: Thank you. I’m so glad we got to do this.
Mel: Yay. Bye everybody.
Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.