S8E2: Disability and Medicine—Rethinking Who "Belongs" in Health Care

Hạ: I think to get platinum, you have to be greater than 1.5 billion streams.

Laurel: I believe it. I don't know if I knew that in my brain, but I feel like I knew that in my heart.

Hạ: They deserve it. Stream K-Pop Demon Hunters, y'all. Please support.

But hi, dear listeners. We are in the virtual studio. It is me, Hạ, and Laurel.

Laurel: Hello.

Hạ: And so we are here for a very low-key, intimate conversation about important topics in the world.

Laurel: Cozy, even.

Hạ: Yes, cozy. We're going to try to be cozy. Also wowee. Also try to interrogate the system and processes. That's all what we're all about.

LaurelThat's very much the vibe, I feel like. Cozy interrogation.

Hạ: And you all can't see me. Laurel can see me, but I'm ready for a cozy interrogation with a blanket draped over me as we speak.

Laurel: It is making me wish that I had a blanket. I will move forward knowing that I should keep a blanket on hand for situations such as this.

Hạ: Definitely.

Also, other important PSA. Before we begin this conversation, I want to put in a disclaimer that the thoughts and opinions expressed on this podcast are our own and do not necessarily reflect those of our respective schools or employers.

And so for our listeners today, one of the things that I wanted to talk about that's been a topic that I've been actually thinking about for quite some time is the discussion of disability in medicine. And one thing that I always want to first do is some intention setting.

There are a lot of amazing disability advocates out there, and there are so many different places and people to learn from. And I recognize that in this episode. I think it's just a hope of bringing more awareness to the topic and just also reflecting from our own personal experiences and thoughts overall, recognizing that this is just meant to be a little piece of a bigger puzzle.

I think to start off, just to say with the topic of disability in medicine, I want to first give the formal definition that is given by the ADA, which is an acronym that I forget what it says.

Laurel: Americans with Disabilities Act.

Hạ: Thank you. And with the ADA, they define a person with a disability as a person who has a physical or mental impair that substantially limits one or more major life activity. And one of the important things to note is that this is meant to be more a legal definition per se versus a personal lived experience definition or a medical definition.

Laurel: I think that it is interesting to almost immediately separate it into this dichotomy of mental or physical disability. A friend of mine has a few different disabilities, and we had a conversation once about how most people assume that her most disabling condition is a physical one related to vision impairment, when she mentioned once that her probably most disabling diagnosis was actually her anxiety, because that was a larger impediment to her daily life.

And so I think it's just interesting in this legal definition that we already get into there are people with physical disability, which is a mechanical whatever and often is associated with things we can see, and then there's mental disability and all of the baggage there.

I don't know. I think that already we are sort of cutting people and human experiences into pieces, which I think is something that happens both in the legal framework for disability and in the medical framework for disability. Does that make any sense?

Hạ: That makes a lot of sense, and I feel that so much. It's like what you were saying, Laurel. It's very creating dichotomy. It categorizes people into boxes, these clear boxes, but it's so complex. Much more complex than that.

Growing up, when I heard about disability, there was a specific picture or there was a specific stereotype that made me think what was constituted as a disability versus what is not. And I think this definition, even for all that it tries to do, still plays a lot into that.

Laurel: I just finished a book, which I believe you have read, which is "Tomorrow and Tomorrow and Tomorrow."

Hạ: Yes.

Laurel: And I really loved that book for a lot of reasons. One of the reasons is that the protagonist is a character who I think we would consider to be disabled, and was in a car crash where he loses a lot of function of his foot and later has to have it amputated and leads to a lot of mobility impairments.

And one of the things in the book . . . I am forgetting the exact verbiage, but it was something to the effect of, basically, this character would not consider himself disabled. He would consider he has a thing with his foot.

I think that we create this sort of archetype of what it means to be disabled or look disabled, and that creates such a problem, because then I think people . . . When you're framing this archetype of disability, especially in the form of impairments, a lot of people don't identify with that. I think it is, at least personally, more productive to think about disability in terms of accommodations, right? What can we do to accommodate, facilitate, include?

It reminds me of another, I think, frequent conversation point in disability justice spaces that I've been in, which is that there aren't disabled and non-disabled people. If you live long enough, eventually you will encounter something that can be considered disabling, right?

And so I feel like part of talking about disability, and this comes up so much in medicine and healthcare, is to remember there is not us the providers who are healthy and paragons of the human body, and then patients who have health conditions or disabilities or chronic illness, and we are two separate types of human being.

I feel like understanding that unexpected things happen and it's part of . . . or even expected. I would probably say I have always been autistic, at least last I checked, and that is something that plays a consistent and constant role in my life. But the way in which I require accommodations, I think, has evolved a lot just based on reframing "Who can disability include?"

Hạ: I've realized that, yeah, how I categorize what disability means is constantly evolving, and it's becoming a lot more inclusive, and it's becoming a lot more nuanced. But unfortunately, it feels like a lot of times the systems aren't really allowing for that.

I think you mentioned a little bit, and one of the things that I do think a lot about, is how in our medical community medicine often is very much an ableist system.

Laurel: Yes.

Hạ: Yes. And medical education itself, the way that the system is designed also continues to enable this ableism.

Laurel: Yeah. The system of medicine, and especially medical education, I think of often as a narrow window that doesn't allow certain people to pass. Sometimes when you talk about making room for disabled people in medicine, folks jump to worst case, like, "Oh, you're going to let a person do heart surgery who doesn't have the physical whatever to do heart surgery?" And it's like, "No, it's that there are reasonable accommodations that can be made for many things that are not accomplished in medicine, I feel like, largely due to ignorance and current culture."

I know multiple people who have very successful careers in medicine with disabilities that occurred after their training. And it's one of those things where it's just interesting to see because you look at that and you go, "Well, then why can't individuals with disabilities go through their training?"

Especially when we know that when we have people with shared experiences in healthcare, healthcare provision is better for those patients. And so it is strange to me, as a lot of things that are sort of baked into medical education are. I feel like we get so creative in medicine with problem-solving until we encounter problems that we just don't want to solve. And that flummoxes me.

Hạ: A lot of places do Zoom School of Medicine, essentially. Where is closed captioning for lectures? And also, even thinking about the fact that we have mandatory lectures, but how do we think about how some people learn differently?

Medical education loves to talk a lot about adult learners, and yet at the same time, they're not really thinking outside of the box about what it means to be an adult learner and how different people have different learning styles. And then if you're counting also learning disabilities too into it, it means there are so many different venues that we could continue to think about things.

And to that credit, it's also interesting thinking about the patients. It's true the more inclusion and diversity that we have within our medical workforce, and multiple studies have shown this, the better care that is given to patients.

And when we look towards the future with everything, I think that we have to think a lot about how we will have a lot of patients who are medically complex, who would be considered disabled. How do we care for them and be a bit more able to center them a lot more?

As a pediatrician, I think that now we are starting to see, because of the medical advancements that we've done, a lot of our patients have a lot more medical complexity than they ever did in the past.

As macabre as this is, a lot of what people say about pediatrics and transition to adult care is that, in the past, a lot of these conditions, without the medical advancements that we've done, they would not survive past childhood, but now they are surviving. And we have a training system and people who are just not prepared to handle that medical complexity.

Laurel: They're not prepared. That's the truth of it, right? I just think about some of the healthcare workers who I've worked with. I feel like the ones who really inspire me think about the details, I guess, just the lived realities of your patients, what you don't necessarily get out of a textbook. Part of that can come from . . .

Well, even let's say that I, as an individual, there of course are going to be experiences that I never have, right? But how much did I benefit in our partially shared medical education from talking to patients and meeting people with those experiences?

And so I feel we're more prepared both as individuals and a workforce just by training. Even if it's not us . . . I mean, it is us, but the experiences that I have can benefit the people training with me, and the experiences other people have can benefit me, and we can be more prepared and better suited for a variety of outcomes. I feel like that's the goal, right?

When you have a patient, hopefully, already that they have the mobility to be able to enter your clinic room, right? Start there. And that you have the tools to help that person. If we're not prepared, if we are only thinking of people as a checklist where only one thing can deviate at any given time, then we're not ready.

And I think about this a lot as someone who's also interested in pediatrics, but especially rare disease, multisystem conditions. I think this is just overall in medicine, right? If you reduce people to a singular problem, then you could only do so much for them.

Whereas if you have an understanding of if you have a kidney condition, it's not just you have a kidney condition. It's how does that affect what you eat, what you drink? Does that have an impact on your heart? Does that have an impact on your activity level? Does your activity level have an impact on what you're able to . . . There's just the reality of being alive in a body.

I feel like disability justice has really helped me think about people in a more encompassing way than a lot of actual tenets of medical education, which I think is kind of interesting. My disability justice work is multifaceted and I definitely feel like I learned a lot of stuff that would have benefited me. If I hadn't learned it from disabled people and disabled advocates, then I would have hoped to learn those things in the classroom or from clinical mentors, and the reality is I don't think I would have.

And so I just feel very strongly that it behooves us both as providers and also as people to try, think. Is that not fair?

Hạ: No, I think that is so valid. It is interesting because as you were talking, it made me think about how I feel like in medicine, we're just taught to fix the problem. They come in with acute kidney injury, got to fix that. They come in with heart failure, got to fix that. We don't really teach medical students and residents and trainees how to sit with that.

Sometimes some problems are so complex that it's not an easy medication to be fixed. And sometimes some problems are so complex that they impact all these different facets of people's lives. But we still need to empower people, and we still need to let them live the lives that they want and have those conversations to understand what living a good life means to them. We're not taught to think about it in that way. We're taught about how to fix things in a very prescriptive way of fixing things.

Laurel: Yeah, and it's something where . . . I think a lot about, like you said, this idea of fixing. And it surprises me sometimes how often I see or sense med students and residents and really just practitioners of medicine be really uncomfortable when they can't fix a problem. And the reality is there are a lot of things that simply are.

I think about the people I've known with chronic pain. In undergrad, I trained guide dogs, seeing-eye dogs, and so I think about people who have been blind or visually impaired and will continue to be blind or visually impaired.

I think that there's a frustration that comes from framing, again, as, "This is a problem that I'm here to fix." The reality is very often we're not, as physicians, going to be able to fix things, right? Our job is to really help patients in whatever that looks like.

And so I just feel like it's important to sit with that potential discomfort and maybe even ego in how we think of our roles as physicians, where it's nice and sometimes you can . . . Problem A can be resolved by Solution B. But very often, that is not the case.

Hạ: Something I struggle with as a resident at a center with many very medically-complex kids and children and patients and just figuring . . . I also wish we created a space to process this fact and to work through the fact that sometimes there are problems that can't be fixed and do it intentionally, and in a way that doesn't cause moral distress.

I feel sometimes because we have been so caught up in boxes, we end up trying to solve things in ways that cause more moral distress for everyone involved than others.

I think it's just frustrating, and it's something that I reflect on a lot about. And it's why I reflect on a lot about what can be done better systems-wise with the medical education, with the patient-provider relationship, with policy in general.

Laurel: It's something where there's the micro and the macro and the rippling out, and it takes all kinds. But I feel strongly that physicians are in a position to advocate for our patients on many levels. And at least personally, I feel like there is for me a personal responsibility to do so in the clinic and outside of the clinic. I think that requires education, which requires some level of interaction and exposure.

And this is different, but I did research a long time ago now because I'm old or whatever, and I've been doing research for a bit, but basically, I assessed healthcare providers at the university level and their training on specifically trans health.

The response that I got was basically they did not receive that training unless they specifically personally sought it out and pursued elective opportunities for training. And I feel like it is similar for a lot of disability education. I think that that's challenging because physicians are already busy people, as are med students.

And so I think the question for me is "How do we kind of bake this in? How do we have this be a layer in the apple pie or whatever that we're making?"

Part of "I got this because I specifically looked for it and pursued it" and getting to the point that we are providing healthcare includes thinking about the different types of experience that either our patients may have or that we might end up having, or are already having.

Hạ: Always whenever I'm trying to be, "How do I do better?" I think about it in all of these different process models or things. When things overwhelm, I try to break it down into chunks. And I'm sitting there, and I'm going, "How can we make our medical education system more inclusive and actually consider about how to support medical students who identify as having disabilities?"

And thinking about the research that has been shown, there's an organization called Docs with Disabilities, which does a lot of research into this in the medical education sphere. And they were showing about studies looking at different AAMC . . . What is that acronym? I don't even remember anymore.

Laurel: That's one of those that I . . . Like you said, I say it and then I'm like . . .

Hạ: It's something like Association of American Medical Colleges. Something like that.

Laurel: You know the people.

Hạ: Yeah, you all know. But for the premeds and the people who don't know, you all will know eventually. But they do all these surveys, and in the surveys, they show, for instance, clinical faculty and residents are often the most frequent sources of discrimination for the experiences of people with disabilities as medical students.

Then I think about it, and I'm like, "Oh, so that tells us that we need to teach clinical faculty and residents how to be a bit more thoughtful about this." So how do we bake this into the medical education sphere?

We mentioned accommodations. One of the other studies that they did show that medical students who are able to obtain accommodations just felt much more satisfied than people who did not, which wow. Shocking.

Laurel: My mind is blown.

Hạ: But the world needs to see this research to believe it, I guess, even though it feels intuitive.

But all of this is to say it then makes me think, "Oh, how do we make accommodations more obvious for people? And how do we even think outside the box about what accommodations can mean? How do we make the process to get accommodations not such of a headache?"

And so then I think about that bucket, and then I go to, "So by adding more inclusivity, then hopefully this also means that we will have a much better workforce for patients." But then how do we also teach people these things throughout, and how do we continually give updates, and how do we also integrate intersectionality into it? And then how does all of this go into policies?

For instance, in pediatrics, a lot of times the things that I need to help with for patients is advocating for them at the school level so that they can get the accommodations they need. How do we do training for that?

And this was a very long rant to say I just sit and I try to process, think it get out. But it's such a huge endeavor of all these things to do because the system just hasn't been built to do it. It's disappointing.

Laurel: Totally. Do you know how you eat an elephant, Hạ?

Hạ: No, I do not know how to eat an elephant.

Laurel: One bite at a time. And so it's something where, yeah, I think that the problem or problems are large and overwhelming, but I think it's . . . Like you said, you chunk it up. You do what you can.

And I think part of it is moving the needle. Something that I've tried to do, I guess, is bring the knowledge with me when I'm in rooms and I'm in tables, and I'm sure you do the same. It is overwhelming, but also, we're working on it. And so it's something where I'm hopeful that when I show up in a space as, hopefully, an eventual physician-scientist, and I am open about being autistic and having ADHD, that other people can request their accommodations because they'll know that I get it.

I hope, as a PI of my own lab, to train people in addition to staying in academia and probably mentoring trainees, etc. And so it's something where we do our part, and we try to raise the ship with us as little waves that join together.

Hạ: I love the little ship. If each of us makes enough ripples, it will create a big enough wave.

Laurel: Exactly. Yes. You're picking up what I'm putting down.

Hạ: Yes. We're finally getting good metaphors out of this conversation.

Laurel: A lot of other things in disability is there's this inclination to categorize things. And so there's the social model of disability and the medical model of disability. The medical model of disability is, "Something is a disability because we have an ICD code for it. We diagnose it as such."

And then the social model of disability is sort of, "Something is a disability because when you go out into the world in the macro sense" . . . And this is me paraphrasing. I'm sure someone could define it better than me, or it has been defined better than this. But basically, it is, "The world is not designed for you."

And so it's something that comes up a lot with autism. I don't speak for everyone and their perspective, especially in autism where there are different levels of support and personal impact. But it's something where I feel like we have to be able to, again, hold that complexity where both the world is not designed for me in a lot of regards and also there are medical considerations that I require.

And so it's something where I feel like balancing the personal experience, I guess, that each person can . . . Each person is a universe unto themselves. And I think, again, when we are really tempted to classify and categorize, we risk overwhelming someone's personal experience with our assumptions about what their experience is.

I feel like in the realm of disability, again, there's this jumping to reducing someone to their diagnosis or their box, right? And so I just think that the best way to combat that is the more you learn and meet people and the more, I guess, shades of experience you encounter, the more that you can draw on a variety of experiences instead of reducing to the one five-minute lecture you got four years prior.

Hạ: I feel like that was a very beautiful point. And I felt ultimately it is the thing that you center on, is people's stories and their lived experiences and seeing the person as a complete person and understanding and reflecting from where they're coming from. This is why I always appreciate having these conversations and getting to recenter back on that core of appreciating people's stories.

Laurel: Many, many years ago, I was . . . Oh, gosh. Middle school, high school, I was part of a theater troupe specifically designed to perform for autistic groups, where it was inclusive, sensory-aware in a lot of ways for people to participate. It was one of the best experiences of my life for a lot of reasons.

And one of the aspects of that was we went and we saw this documentary called "Wretches and Jabberers," which is about a lot of things, but it's about these two autistic men who refer to themselves as the Wretches because they are non-verbal and basically couldn't express their stories for a really long time until they were given the technology where they basically can type and can verbalize themselves as such. And then there are the Jabberers who can speak freely. This documentary was basically about them traveling the world to meet other non-verbal autistic people.

I just loved it for a lot of reasons because it's something where . . . I don't think a lot of people recognize that I'm a verbal autistic person, but I see myself as having more in common with a lot of non-verbal autistic people as someone who can go non-verbal than an allistic person.

We're in the spectrum of experiences that is autism, and so I sense our shared humanity. And I think it was something about getting to see people who are often talked for and talked over articulate their own experiences in their own words when finally given the platform to do so that was just so special.

And again, being part of a performance troupe where people were encouraged to literally perform who are often not able to participate in the arts was just really important for me.

And so, yeah, I just think it's something where people's stories . . . At the end of the day, that's also kind of what medicine is, right? It's understanding people's experience and then putting it through our lens of expertise to try and help them. And I feel like it's the same with disability where if you're not listening and you're not open to hear, then how do you get to the other side, which is helping and healing?

I try to keep up with a lot of disability advocates. I was laughing at myself. I make a playlist now for every season, which was recommended by a friend of mine. And my summer playlist is a lot of songs by actually disabled artists and rapping, which is great, but also it's just one of those things where I'm like, "Why would this experience not be part of the broader experience of music and self-expression?"

And so it's just one of those things where, yeah, what a wonderful career to get to know people and their stories, and what an opportunity to do a better job just by trying to be a better physician tomorrow than we are today, I guess.

Hạ: I think that is so beautifully stated, a beautiful way to close. I think for me the big thing that I want to really continue to center and emphasize about this is the importance of centering stories, the importance of continuing to listen, and the continuation of, for some people, going outside of your comfort zone and really searching for things that aren't obviously available thanks to the ableist world that we live in.

And really seeking out people's stories and centering those stories a bit more, and continuing to also think about how, in my own day-to-day, I can re-envision more inclusive spaces for people and what I personally can do about it.

Even if you're making learning materials, thinking about how to make it more accessible and being really thoughtful about that. I think those are kind of the things that I keep hoping to carry with me. And I keep hoping that the grind of the medical education and residency training system does not take away from me, even though sometimes it does feel like it's working really hard to do that, Laurel. It's working really hard to take it all away.

Laurel: It's working hard, but we work harder. There isn't just a line that separates anyone really in this shared experience of being alive on this little blue planet or whatever.

I feel like, again, in the conversation about providers and patients and disabled and non-disabled groups, we are in a common humanity, and we owe it to each other to find ways to support each other and to accommodate each other in both a figurative and literal sense.

And so I have a lot of hope and I have a lot of worry, and I am working every day so that the hopes can be fulfilled and the worries can be quieted.

Hạ: That is very poetic and beautiful. And with all of that, thank you so much to our dear listeners for listening. You know where you can find us, wherever you podcast. And I hope that the . . . What was it? The piece of slice of the pie . . .

Laurel: Oh, the slice of the apple pie.

Hạ: This is just a slice of the apple pie, but I hope that for everyone listening, it's helping people continue to think, continue to engage. Always love to hear from you all. We appreciate you.