Join us this week on “Beyond the White Coat” to talk about a group that is often forgotten about when we talk about diversity: people with disabilities. Guests Allison Kessler, MD, and Lisa Meeks, PhD, along with host AAMC President and CEO David J. Skorton, MD, discuss why the number of disabled doctors continues to lag behind other underrepresented groups and what individuals and schools can do to help be more inclusive of those with disabilities. Stream wherever you get your podcasts.
Beyond the White Coat | Season 4 Episode 6 | Transcript
RACHEL BUNN: Welcome back to “Beyond the White Coat,” where we convene authentic conversation between members of the academic medical community, AAMC leaders, and other professionals on timely issues. I'm your producer for this episode, Rachel Bunn. This week, we'll be discussing diversity in medicine and talking about a group that often gets forgotten when we have these conversations, doctors with disabilities. It's estimated that while roughly 1 in 4 or about 25% of adults in the United States has some type of disability according to CDC data. It’s also estimated that only about 3% of practicing physicians in the U.S. have a disability. I'm joined as always this week by our fearless leader and podcast host, Dr. David Skorton. David, I just mentioned that data around the overall U.S. population versus doctors with disabilities, how do those numbers strike you? Are you surprised at all by this data?
DAVID J. SKORTON: The first time I heard those data, I was very surprised, Rachel. And I tell you, it's yet another hill to climb. We have a lot of areas where we need to climb some hills and get where we need to be. And this is clearly one of them. So, I'm not shocked today only because I've seen those data before, thanks to you, Rachel. But it is shocking. It means there's a gaping chasm between where we are and where we need to be. So big shocker, and we got work to do.
BUNN: Yeah, and we are so excited to have our two guests to talk to you about what some of that work can be. So, this week you're joined by Dr. Allison Kessler, who is the section chief of the Renee Crown Center for Spinal Cord Innovation and associate director of the Shirley Ryan Ability Labs Spinal Cord Injury Medicine Fellowship, assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine. Allison was actually one of the people interviewed for the AAMC's 2018 report Accessibility, Inclusion, and Action in Medical Education, Lived Experiences of Learners and Physicians with Disabilities. We're also joined by someone else who worked on that report too, who is Dr. Lisa Meeks, one of the authors of that publication. And she's an expert in disabilities and medical education, a clinical associate professor at the University of Michigan Medical School and Institute for Healthcare Policy and Innovation, director of the Docs with Disabilities initiative, and on top of all of that, the host of one of our very favorite podcasts here, “Docs with Disabilities.” So, we are really excited about this conversation today, and I'm gonna hand it over to you, David, to lead it.
SKORTON: Thank you, Rachel. And I'm so thrilled to have Dr. Meeks and Dr. Kessler here today. You don't know this, but I'm a big fan of both of yours. I've learned a lot from what you have already done with the AAMC and elsewhere. And in my way of thinking, this really has to do with a broad, broad area of diversity. And I want to first ask you what you think about diversity, why in your point of view, why is diversity important in medicine and why is it something that we should be concerned about? And I ask you for two reasons. One, I very much want to know your point of view. And secondly, we have some headwinds and some challenges about moving toward a more diverse health care workforce. So, I'm curious your thoughts about diversity. Dr. Kessler, maybe you can kick us off.
ALLISON KESSLER: Yeah, I mean, I think that the biggest thing is that we’ve seen that diversity is important so that we can get different people’s perspectives, points of view, knowledge, background information. And what we know is that when you have a diverse group of people, outcomes are better. And so we know that ultimately we as physicians want the best for our patients. And we know that to have the most, the best outcomes possible for our patients is to have a diverse workforce. And so disability is just one of those areas that right now is underrepresented in medicine, but often forgotten about when we're talking about the need for diversity in our workforce. What we also see though, of course, is that when we look at the data, we know that physicians as a whole are, have biases that they may not even recognize. towards people with disabilities. And again, what we also see is that people having exposure to people with disabilities can help mitigate some of those biases. And so once again, having exposure, having colleagues with disabilities is essential if we want to address one of the biggest issues that faces our patients with disabilities, which is a workforce that maybe doesn't understand or has biases that they may not even acknowledge or know are there for them.
SKORTON: Yeah, it sounds Dr. Kessler almost like a vicious circle. If it's underrepresented, you don't have a contact. If you don't have a contact, you don't learn, you don't gain. And then it just keeps spiraling. So very, very interesting point of view. Dr. Meeks, what do you say?
LISA MEEKS: I say Allison Kessler is brilliant, and I agree with her response. I would only add that for me, it's about widening your lens, right? Which is essentially what Allison is saying. By having a more diverse workforce and by engaging with colleagues and peers across all of health care and every specialty and setting, we widen the lens. And when you widen the lens you see far more possibility, you're able to view issues and barriers and challenges from a different perspective, kind of take that perspective from, not just people with disabilities, but from all patients, and we reduce ableism and stereotypes. So really important to what Allison was saying about the mindset of physicians and the perspective of physicians, we can only combat that when we have a bigger picture. When we have a better understanding. And so by widening that lens, we're able to view the whole person, view the entire context of how they're coming to us, disabled or other marginalized groups, and we're able to shatter some of those stereotypes that we have — especially when we have physicians like Allison and others working in that same system, every day combating the stereotypes and the assumptions that people make.
SKORTON: Yeah, very, very, very interesting, both of you. What about what it means to have a disability? And I'd like to start at that very basic level, because I think this is a topic that's so new to so many of our listeners. So, Dr. Meeks, from your point of view, how would you define that? How can people understand what you mean when you say disability?
MEEKS: Yeah. The law gives us a definition of disability, right? A physical or mental impairment that is substantial and cuts across many life activities. In medicine, we see learners, trainees, physicians that come to us with chronic health disabilities, ADHD, depression, anxiety — so psychological disabilities, learning disabilities — and then those that are more general and probably what the audience thinks of when they think of disability, right? A mobility disability. So being a wheelchair user, being deaf or hard of hearing, or having a visual disability. So, all of those across that entire spectrum, all of those types of categorical items can be disabilities. Now disability is really contextual. So, for many people they may have a disability and have some functional limitations because of that, but it is not until you encounter a system, like our training and educational systems, or a physical space where you actually encounter a barrier. So the idea is that, you know, if we were to shift some of the ways that we teach and train, and if we were to shift some of the physical spaces in which our patients receive care and where we operate, we could actually reduce many of the barriers that would be required in order for a person to need an accommodation or be disabled in that particular space. And then I think disability is also a form of identity and I'll let Allison speak to that in more concrete terms for a physician. But I think, you know, it's one of those facets just like any other element of your identity that just becomes part of the whole, where individuals have this experience that helps shape and form how they navigate the world and how they interact with others. So, I think there's both the legal definition, the context in which this is brought out, and then the cultural perspective.
SKORTON: Super useful. Dr. Kessler, what would you add?
KESSLER: So, I would say, again, Lisa Meeks is brilliant, and I totally agree with everything she said. And when I give these lectures to people where I try to get them to understand the points I'm trying to get across, I usually start with the WHO's International Classification of Function. And I use that graphic because I think we need to understand that when we're talking about disability, we are not talking about that medical model of disability that so many people learn in medical school. Again, I always use myself as an example because it's very visual. I'm a wheelchair user. You can see me sitting in the wheelchair when I'm giving lectures live. I guess you can't quite see it in the screen now. And I use myself as an example and I say, ok, under this framework, I have a lower extremity paralysis. Ok, so that's my functional impairment. So then there's something called an activity limitation. So, because of my lower extremity paralysis, I can't climb up a flight of stairs. And then there's this third thing though, that is called activity limitation, which is a thing I can't do because you've done it somewhere that needs a flight of stairs to access it, such as a fundraiser or a birthday party that you put in a space that you can only get to when using stairs. It is the interplay between those and also society, societal factors, biases, ableism. It's the interplay of all of those things — that's what creates the disability. It's not the fact that I have lower extremity paralysis that keeps me from going to that fundraiser, which is the medical model, right?
You're saying, well, the medical model is because she's paralyzed, she can't do this thing. But it really isn't about my paralysis. It's that the party planners didn't take into consideration that somebody might want to go to this fundraiser that was a wheelchair user. And so, they picked an inaccessible venue. But that's a very different statement, right? And so that's where we need to have a better understanding that it isn't just that medical model. It isn't just this quote, part of my body that isn't working the way you think it should. It is that larger societal discussion, and not understanding and decisions made that prevents me from doing those things or being able to join in whatever the activity is. And in this case, we're talking about medical school access, right? And this goes back to kind of your point of this vicious cycle. If you don't have learners that can engage with the people creating the curriculum to help design it in a way that's accessible for our learners, then nothing changes and then we end up in this cycle. And so that's why this goes to that second piece of disability as an identity, Dr. Meeks has really helped me own my identity as a physician with a disability because I didn't grow up with a disability.
I had my spinal cord injury when I was in high school and so I had to relearn my identity. This was a new thing for me. And I didn't really know how to own that new identity. And it's through an understanding that other people need to have their eyes opened is sort of what has pushed me to really own that identity and say that I need to use my intersectionality of being both a physician and someone with a disability or identify as somebody with a disability to really take that platform that is unique and use my voice to speak up and say we need more people to have access if we want to be better physicians both for our community and for our patients.
SKORTON: Your point, Dr. Kessler, about not being able to attend an event because of stairs and so on. I had a colleague in my residency, which my residency was a very, very long time ago. Actually, it was before many of the bodily organs had been discovered, so it was a very long time ago. But I had a colleague who had a mobility disability that came upon him in college, actually. And this was a residency. He taught me way back when that even if, even if in his view, a bunch of us in the residency class or his instructors wanted to do things that would make it possible for him to participate fully, that the building planners and the city planners and people who were way outside of the medical environment would have a direct effect on his ability to take advantage of the medical environment. Is that still the case, Dr. Kessler?
KESSLER: Oh, absolutely. When we get to build a building from the ground up, so here at Shirley Ryan Ability Lab, we recently built a building from the ground up. We opened in 2017, and so we did have people with disabilities, both as patients, and I got invited as part of the staff to say, how are we gonna make this environment accessible for people who are both staff members and patients getting treated here, and everybody in between? But we don't have that luxury in most medical centers, right? Most medical centers aren't being built from the ground up, and they don't necessarily ask the right people to be part of the design team. And what I can also say is even when you build it from the ground up, we're still in the middle of downtown Chicago. There are plenty of people that can't access the middle of downtown Chicago, right?
And so to your point, then the question also becomes, ok, again, I work with the majority of people of my patients have spinal cord injuries, they can't necessarily get here because they can't even get out of their house because there's a flight of stairs to get out of their house. So even though our building is exceptionally wheelchair friendly, that doesn't mean that they can get to my building to get the services that they need. So, there are larger societal issues at play that can absolutely prevent access both from the physician side and from the patient side.
SKORTON: You know, staying with this idea of a greater societal impact, but focusing on physicians, on docs with disabilities, as you would say, Dr. Meeks, should we be activists in this regard? And if we are to be activists, how do we figure out what to say and to whom to say it and what our goals should be? Dr. Meeks, tell us how to move forward and be helpful, be allies, be supportive.
MEEKS: Great question. I want to point something out. I'm struggling — I think Rachel will appreciate this — I'm struggling with, I'm like, ok, what's my next question? Then I'm like, oh, I'm not the interviewer. But you said something really profound, David, and I don't know that you even realized that you said it, but I had an aha moment for myself. You talked about training with someone that had a physical disability. Why are we here today talking about this? Why are you? the leader of the AAMC invested in this? Why do you think this is important? And I would argue that in part because you've had that experience, right? You've had that experience training alongside someone with a physical disability. And because of that experience, exactly what we were talking about earlier, your assumptions, your stereotypes that might've come up, that resistance to the medical model under which you were taught back in the day when organs weren't even discovered, as you said. All of that informs your opinion about what's possible. Your lens was widened when you trained alongside that person.
SKORTON: You bet.
MEEKS: And because of that, it has, whether you know it or not, it has informed everything you've done since to this day, in this moment that we're here. And I think that's really important to highlight because the idea, this contact theory idea that's also used towards anti-racism, is this idea that because we're in an environment and because that environment shapes our thinking, that when we work in close proximity with others towards a similar goal under similar conditions, that we can combat these prevailing assumptions that people make. So that's super important.
So, you ask me, what do I think is important? Clearly, I'm unapologetically devoted to getting more individuals with disabilities in the physician workforce. And by virtue of them just being there, this will be one mechanism for changing hearts and minds, right? In the absence of that, I think what we need to do is we need to make people aware. You brought up something else that was really important. And that is that people may not even understand that they have these biases, right? The societal messaging that we get about disability is so strong. It’s exceptionally strong. And it comes to us at such an early age. We are taught about how to think about people with disabilities in a number of different ways. But none of them are as our equal. It is to feel sorry for someone with a disability. It is to fear someone with a disability. Or it is to think that if that person accomplishes anything, we are to revere that person with a disability. They are an inspiration to us. That is how we’re taught to think about disability. We are not taught to believe that we will work alongside, learn alongside, live alongside people with disabilities. And when we don’t have that belief system, when society has consistently sent us these messages, and of course the media reinforces all of this, we internalize that. That’s the ableism that lives inside all of us.
So the first thing we have to do is help people understand and recognize that the immediacy of what they think when they see a person with a disability, or they have somebody with a disability in their clinic or in their environment, when they think about disability or are forced to think about disability, the first things that bubble up, right, are likely things that we need to challenge. And to get people to stop, think, and challenge themselves, disrupt that bias by saying, ok, what are the facts here? What am I adding? What are the layers I'm adding that I don't even know? I'm making all of these assumptions, I call them layers, about a person or a thing or a situation for which I have no facts to support. And so I think that getting people to combat their own ableism is honestly foundational.
I think the other thing that has to happen, in where we’ve had progress and the reason I think our movement has been so impactful and has been so successful, is because of people like you. Because we've had leaders in the AAMC before you and now with you, leaders in the AMA and the ACGME and at medical schools themselves who have said, this is important, I believe in this. I'm supporting this, I'm elevating it, I'm sponsoring this topic as worthy in this space. And that is critically important.
And then ultimately, any of the work being done has to be informed by and with people with disabilities. And so, traditionally a lot of the work that has been done for people with disabilities has been informed by individuals who have never had that lived experience. And not that those individuals are not important to this work, they are, but it's critically important that people with disabilities are also part of that work.
And so you asked about allies. I would say it's important to be an ally. It's important to make sure that the individual with a disability isn't always the one that's having to speak up or say something or do the teaching in the space, but it's also, I think, and I'd love to know what Allison thinks of this too, but I also think it's important that we move, and you've done this David, that we move from being an ally, right? Somebody who wears the t-shirt, celebrates disability pride, celebrates disability employment month, to being accomplices. And what is an accomplice? That's someone who's willing to put their privilege, their power, their messaging on the line to support this cause. And you've done that. Allison has done that. All of the people that share in this space, and there are so many of them, have been true accomplices to say, I'm elevating this, and I'm going to use my power and privilege to make sure that this topic is discussed, that these changes are made. So sorry for the long answer, but this is particularly, I think, important.
SKORTON: So, this is, again, part of my owning — just talk about myself now, part of my education on my own biases. And the only way that I've ever been able to learn anything about any of them, and I'm way, way early on the learning curve across the board, I want to stipulate that, is by looking in the mirror and understanding that even if I don't feel I mean to have them, even if I don't think that I, put it differently, even if I think that I'm a pretty understanding person I don't understand those biases unless I find that they are there. And back to what both of you have said about the importance of diverse teams and diverse groups of people, without that input from people living in experience, understanding it from that inside out, we're never really going to get to understand the biases. Like any problem, if you want to understand and begin to solve any problem people are experiencing, you have to follow the lead of the people experiencing the problem. So, it seems like another truism along that trail that you both are really teaching me a lot about today. And I bet our listeners as well.
So, you both mentioned ableism in passing or in your comments. Dr. Kessler, tell me a little bit about how you define ableism. And for those listening to us who maybe haven't heard that term before, help them to understand what it means to you, please.
KESSLER: So, the answer is, you know, the textbook answer that I usually give for what ableism is, is the belief that somebody living with a disability's life is inferior to the life that someone's living without a disability. What I sometimes use as another analogy is something called the disability paradox. It was actually coined back in 1999 by Albrecht and Devlieger, where they said, why is it that people living a life with disability don't think that they have a bad quality of life? When you ask the person with a disability, their quality of life is about the same as other similarly aged, sex-matched individuals, yet to the outside person without a disability, their life seems undesirable. And this is the paradox of the person living the life thinks they have a fine quality of life, but the person without the disability is externally rating their life, quality of life, as inferior. That's the crux of ableism. But I think using the word ableism is so important because I think it really challenges that assumption that people have those internal biases to recognize that immediate gut reaction of like, ooh, I wouldn't want to live like that. That's ableist. That is automatically already putting this negative connotation on that individual when you know nothing about them, how they live their life, who they are, what their desires are, what motivates them. But you've already said, I don't want to live like that. I wouldn't want to live like that. That is what ableism is.
SKORTON: Dr. Kessler, is it prevalent, that attitude? Is it common?
KESSLER: Unfortunately, yes. We are an ableist society, and we have the data to back it up. As Dr. Meeks said, unfortunately, this is so pervasive in our society. There are, again, some wonderful researchers out of Harvard that have been tracking bias over time. And that's Dr. Charlesworth and Dr. Banaji. And they look at disability, they look at lots of different types of implicit biases. And what they've seen is that our society is very biased against people with disabilities. Some of the other top ones are actually age and weight as well. And what's really interesting is they've been tracking these biases over the past 10 years. And what they found was that things that have had allies and national movements to raise awareness like race and sexuality and all that comes with that word. So again, I'm going to use that very broadly because that's the word they use in their literature — that they’ve seen that those biases are improving. But nothing has changed for disability over that time.
So, the other thing sometimes I hear people say, well, it's so ingrained in our society, how are we supposed to combat that? And my answer is, with knowledge and with exposure, we can combat the bias. We've shown that bias can change over time. But somebody has to be invested in helping people address it. And for me, the first step is acknowledging. We have to acknowledge that ableism is here. We have to acknowledge that it's pervasive. And we have to also acknowledge that it doesn't mean you're a bad person. It means that you haven't yet been educated. Now, if you continue to be ableist after somebody demonstrates to you and educates you, then yes, I can say, then we have a bigger issue here. But I think sometimes people get such a, very defensive, like, oh, you're saying I'm this horrible person. I'm like, no, what I'm saying is that you haven't had your lens widened. You haven't realized that gut reaction of seeing somebody in a wheelchair, ooh, I wouldn't be able to do that, or I wouldn't want to do that, is a negative thing that you haven't given yourself a chance to get to know the person yet. That is what ableism is. And so again, it's there, it's real, but I think doing things even like this podcast is a way to help be an ally and to get the message out for people to start to recognize the problem. Because that's the only way that we're going to be able to address it, is if we acknowledge it's there and then work to combat it.
SKORTON: Such a powerful axiom, Dr. Kessler, to first acknowledge it in general, acknowledge it in one's own heart, and then begin to deal with it. Thank you for that. It's a very powerful axiom. Dr. Meeks, ableism.
MEEKS: Well, I again think Allison has done a great job covering this. Another researcher, Dr. Campbell, talks about ableism and aligns ableism within the context of kind of all isms, so racism, ageism, homophobia, those types of issues to say that because someone belongs to a class of people, right, whether that's your race or your age or your group, or disability that you are automatically less than. You are automatically generalized to a group whose value isn't the same value as those without disability.
Now, one thing I will add to Dr. Kessler's amazing review of the concept is that I'm ableist. So, I want to take a moment and own that. Because I think it's important for your listeners, especially David, to be able to say that, I get up at 5 a.m., I am a person with a disability. I do disability work all day long and I create space for people with disabilities. And I have to actively combat and disrupt ableist thinking throughout my interactions. Some of the worst ableism I have experienced has been within the disability community. Individuals that have apparent disabilities saying, you know, at least I don't have a cognitive disability or people with cognitive disabilities saying, well, at least I don't have a physical disability. I think that it is misguided to believe that any one of us isn't ableist at some point in their lives. So, in that way and building on what Allison said, this doesn't make you a bad person. We are not the ableism police coming after you, right? This is an ongoing conversation about an important topic in which we are all growing every day. Our awareness is growing. And as we navigate this space, I think giving each other a lot of grace and a lot of opportunities to learn and reflect is critically important. I've never been one to hit people over the head with the law or the idea that they're doing something wrong. In fact, I would argue that my experience with medical education writ large has been amazing and that most people want to do the right thing. They just don't have the tools.
So how do we create an atmosphere where we can give them the tools? One of those things that we have to do is talk about it. As Allison said, we have to name it. We have to talk about it. We have to give distinct examples of how this comes up in medical education. And to kind of bring it down a bit from the general ableism to more specific things that are happening in medical education, this would be an assumption that an individual that's a wheelchair user that's matriculating to your medical school will take a lot of time, will cost a lot of money, and will be highly complex. Those schools, those amazing institutions, Northwestern, Case Western, UCSF, Rush University, that have actually trained individuals that are wheelchair users would tell you the complete opposite. In fact, most wheelchair-using medical students need very little and once they have access or they have the tools that they need, are able to fully engage. It is the attitudes that in so many cases wind up being the largest barriers. And I continue to get inquiries about individuals that are wheelchair users or individuals that are deaf and hard of hearing entering medical education and the assumption that because of their category of disability there is going to be this plethora of needs and that it is going to be highly complex. I think this fear, and I will call it fear because I think that's exactly what it is, is fear that's driven by lack of education and experience, right? And I think that same fear is what we see happening with our patient populations. I really believe that physicians are keeping arm's length from treating individuals with disabilities because they don't have the tools and the knowledge to do that. And they fear that interaction and they layer, going back to the idea of layers, they layer all kinds of assumptions onto that patient before they ever have a chance to engage with them.
SKORTON: Let's stay with medical education just a bit, if we could. And I'd like to talk about two aspects of the medical curriculum related to disability. The first one is the curriculum related to learners in general, teaching learners in general about disability. And the second would be the curriculum aimed at those learners who are experiencing disability. And so perhaps you'd like to start, Dr. Meeks.
MEEKS: So, in thinking about the way that medical schools are embracing, creating policy for evaluating learners with disabilities to matriculate and train in their programs, I am so excited to say that because of the work that we've done together over the last decade, I think we've made incredible strides. I'm very proud of where we are compared to where we were 10 years ago. We now have student groups that are nationally based that focus on disability inclusion for learners. We have a number of institutions who have hired what we call a specialized disability resource provider that is integrated into the medical school to help inform decisions and help do some of the teaching that combats ableism. I would argue that just by virtue of them being there and having policies about learners with disabilities, we are in fact changing the narrative, right? We’re saying we anticipate, we expect individuals with disabilities to be in our training spaces.
I am also just thrilled with the partnership we've developed over the last decade with regard to research and creating the questions and gathering information from learners, evaluating that data, and then using that to drive change in medical education. We see across the nation, the numbers going up, which is always a positive sign that we are either creating safe spaces where individual trainees feel comfortable disclosing their disability, or that we have more individuals with disabilities applying to medical school. I think it's likely both. And we have a range across the country of anywhere from 1% of the medical school classes being individuals with disabilities to 20%. I was so exceptionally proud to work at the University of California, San Francisco, who boasts about 20% of their medical school class as individuals with disabilities.
And so I think we're doing well. Where we're struggling is the kind of disparate application of the recommendations and the guidance. So it may be that school X is doing a wonderful job and has the support of leaders and leadership where school Y is just on the precipice of this work and hasn't yet implemented many of these practices and hasn't adjusted. And so while many, many things make my heart very happy in my bucket, very full, I would say that knowing that a learner in a competitive space that is medical school, knowing that a learner may wind up matching, in this case being accepted to medical school, at a school that isn't as well developed as another school makes me profoundly sad. But these things take time.
And so what I would say is that our efforts are really focused, and I know our collective efforts are really focused on making sure that when people are looking for education and resources, they have that at their fingertips, and they have it at no cost. That they can go to your website and look for the tools that we've created together. They can come to our website and look, and that we will support this area of growth.
Where I get concerned and where I continue to do a lot of work is in the GME space. We're seeing a wave, if you will, of learners that are now graduating and going into residency that have disabilities. And it's a large increase, 112% increase, David, from 2016 to 2021. That's significant.
SKORTON: Wow, wow.
MEEKS: And that's in part due to the work that you all have done and the report and the webinars. But GME wasn't ready for this. And so right now we are working collectively with the ACGME to create a toolkit that's focused on graduate medical education. And so that's where I think a lot of our efforts are going. And we continue to work with your team and building out more resources now aimed really at, ok, we have the kind of tools for application, but we didn't have the anti-abelist tools. And so now that's our next, you know, kind of that's what's on the horizon, I think, for medical education. Well, I know, because we're creating those resources as we speak to train people to become anti-abelist. And I think for medical education, that is where we are. But we've made huge strides, and I'm really proud of that and happy for that. But the next step is actively engaging in anti-ableism and getting the rest of those schools up to speed with where the leaders are in this space. So that every student has a consistent experience no matter where they train.
SKORTON: That's such a wonderful goal. It's a goal we absolutely have to get to. Dr. Kessler, please, your thoughts about the curriculum related to learners with disabilities anywhere along the continuum, undergrad, graduate medical education, please.
KESSLER: So, I actually have one thing to say along with what Dr. Meeks was just talking about. You know, not all schools obviously are kind of the same. And one of the things is if you're a person with a disability and you're looking to apply to medical school, the first place you go is the school's website, right? You're going to take a look at kind of what the website has to say. You're trying to figure out about their curriculum, learn more about them. I haven't published this yet, so bear with me. But I have all the data and the manuscripts ready to go. I just have to find someone who's willing to publish it. I went and I looked at, I started with 50 and then I was like, maybe if I get to a hundred, the stats will change. I looked at the DEI websites for the top medical schools in the United States. And I just looked to say, did they even include the word disability anywhere, anywhere on their website? And that includes their nondiscrimination statement. So, for those of you that don't know, the non-discrimination statement is the one that says, we will accept any applicant regardless of their — and then they list a whole bunch of things, right? I would like you, David, to guess how many medical schools about what percent even mentioned disability, even in just that one nondiscrimination statement on their website.
SKORTON: 5%.
KESSLER: Oh, it was better than that at least. But
SKORTON: 10%.
KESSLER: So about 30% had the word disability somewhere on their website, even once. But that’s still less than half. 30% had the word disability once. And I have to tell you almost all of those instances was that one nondiscrimination sentence. There were a few, and now we're going into the single digits, like you had originally guessed, that had included disability in a really more comprehensive way to say, we have supports for learners with disabilities, we have communities or student groups for learners with disabilities featured on their website. So now those types of things are down in the single percentages. But only 30% even bothered to put the word disability in their nondiscrimination sentence.
And so this goes back to If we want to encourage people to apply, we have to be welcoming. Nobody wants to be in a place that they're not welcome. No one wants to be in a place that they're discriminated against. And so while Dr. Meeks and I have lofty goals for what we want to see be the state of our medical education over the next decade, two, three, four, I think all of us has the power to start small. Go look at your school's website for everybody listening here. Go look at your school's website. Do you have the capacity to add one word? And even that one word, I can tell you, learners, when they're looking at your school's website, they want to say, am I gonna feel discriminated against here? Am I gonna feel welcome here? And something that small, I can tell you, might make a difference for that one person who might apply to your school. So that would be my piece on the learner side to add.
SKORTON: Dr. Kessler, when you get this thing published, please let us know because we want to spread the word about this article, really. This is really important data.
KESSLER: So, your journal will like to publish it? Is this is what you're telling me?
SKORTON: Yeah, you know, that's got nothing to do with me, but I tell you what, wherever it does go, we will spread the word because it's very, very important. Dr. Kester, staying with you for a minute, now let's go to the other, flip the script and go to the other side, and that is medical education about disability for the whole class. And tell us where we are with that and where we need to go, please.
KESSLER: Yeah, so what I can say is I'm really excited that more schools are deciding to add disability into their curriculum. You know, historically, disability was very much not talked about except in that medical model that we talked about. But the social model of disability really hasn't historically been talked about very much. If we look at data back from, you know, 2016, we can say that only about half of the medical schools in the United States had any curriculum focused on patients with disabilities. And the majority of those were a single panel talking about lived experience. Now, those panels are incredibly important. Do not get me wrong. They're absolutely important to have our future physicians hear directly from the patients and their experiences. But I think that one panel about lived experiences in your entire medical school curriculum is not sufficient when we're talking about combating the larger health care disparities that we see.
What I can say is I'm really excited that people with disabilities have now actually been formally designated as a population with health care disparities, and that does mean that we can get funding to look into this and help combat this. But that just happened two months ago, right? So, this is new. This is an upcoming area. But then that means that we need to educate our learners on this patient population and how to care for them. So, I can say some schools are doing really great. I've been asked by a lot more schools recently to start giving guest lectures because they're building disability curriculum. And so I'm really excited to say that we're definitely going in the right direction. What I would say is that we're not quite there yet, meaning not all schools have adopted this social model disability and really understanding that there's a larger issue at play, that these health care disparities are not just because of that impairment that we talked about in the beginning.
What I can also say is that the range of how much the school gives time to this is wildly different across curriculum. And that's because the LCME doesn't actually have a designated standard to which all of the medical schools must be held to, right? The only time disability is really mentioned in the LCME guidelines is to understand that health care disparities exist for people with disabilities, but there's not further guidance than that as to how much you have to have in your curriculum. So, I do think that there's a ton of room to grow to really be able to build out that curriculum. What I can also say is that some schools have done things where they do like a half day or even a full day curriculum based around disability, which again, I think is great that they're devoting the time.
But what I would love to see is that this education should be threaded into the quote regular curriculum. It doesn't need to be this separate thing. For instance, I would love to go in on your cardiac unit for your standardized patient that the students are being tested on, and that patient happens to have a disability. Why? Because all of us in our careers as physicians are going to walk into an exam room and there's going to be a patient with a disability and you need to know how to examine them. But my point is, why does that have to be a separate curriculum? Why is that the disability curriculum, as opposed to in your cardiology practice, you are going to have people with disabilities that are going to show up. So, you need to be able to do a lung exam, a heart exam for an individual with a disability. So that is my future hope. All schools need to have disability curriculum, but I would like to see it bigger and I would like to see it more integrated and I would like to see it standardized as well to ensure that all schools are held to that same standard.
MEEKS: So, Allison brings up a really good point about messaging and we find in our research that messaging is critically important. And that was actually one of the considerations in the AAMC report. Another consideration that where we haven't had a lot of movement, we hope to, was to move technical standards from organic technical standards to functional. And we actually did a paper, it was actually led by one of the students in my lab. Katy Stauffer, so Stauffer et al, where we looked at the newest medical schools that had become accredited and this was 15 schools, and looked to see if the standards had improved. You would expect that schools that were accredited in 2018 and beyond, with all of the considerations and recommendations that we have collectively, that the technical standards would have become less ableist and less reliant on traditional kind of belief systems about what it takes to be a physician. And unfortunately, that actually wasn't the case. They were more restrictive.
And so what we have found in kind of talking to schools after we did that research was that they were merely copying the technical standards from a sister school or, you know, the 1979 recommendations that are out there. And by doing that and not being more thoughtful about this, they were perpetuating those same kind of technical standards that serve as gatekeepers for individuals with disabilities. As Allison said, when students look at your website, they're looking to see if they'll belong. If the language is exclusive of individuals with disabilities, or if the language is void any sort of supportive or encouraging language about joining the medical school as a person with a disability, you risk having people not even apply to your school.
And so thankfully what we did was, David, in 2020, we had a AAMC webinar on technical standards. And at that time, we reviewed all of the facets of technical standards, including the legal recommendations. And then just recently in 2023, a few months ago, we convened with the AAMC a webinar workshop on technical standards, where individuals could come to the table literally with their standards. And we moved domain by domain through the standards, giving examples, real life examples, I might add, of technical standards that were more progressive and inclusive, recognizing how much technology has grown and removing the ableist language, removing any discriminatory language. And we gave examples of current technical standards from medical schools that are perhaps a lot more restrictive, may include some discriminatory language, and certainly wouldn't be viewed as welcoming for an applicant with a disability.
So, if there's a school listening now that's like, how can I improve the situation? I would just add to what Allison has offered, that — go to your technical standards and use these resources that the AAMC has on their website, free and accessible to you, to convene a group and review your technical standards and make sure you're not unintentionally sending a message that these students don't belong or that they could not be successful in your programs. And I would add one more thing about what Allison mentioned and that is, Allison was mentioning this in the context of nondiscrimination language. And I'm not going to claim to own this. I'll give full credit to Iris Gibbs of Stanford University. But Iris was in a meeting with us one day and said something that I found to be so profound, and that was telling a group of people that you will not discriminate against them is nowhere near the same as telling them that you want them here and that you will welcome them. And so, yes, it is important to have it in your nondiscrimination language, but it's even more critical to message to this group of individuals, we want you here, you belong in medicine, and we understand and appreciate the value-add that students with disabilities bring to the physician workforce.
KESSLER: And we will support you in your journey. We will support you in achieving your MD or DO degree, and we will support you in your application to residency, and you will be a great doctor.
MEEKS: Right now, I just want to take a moment to brag because the audience can't see me, but I have literally, my cheeks are going to hurt later from smiling so much. And that comes really, David, from your leadership and just the opportunity to talk about this. But in my heart comes from the Allison Kessler I met in 2016 to the Allison Kessler who is now before us and talking about this in 2023. what a difference it makes to create a space to talk about this. And Allison is now one of our co-chairs for the Docs with Disabilities, Women with Disabilities in Medicine program, creating a lifeline of mentorship for women with disabilities in medicine that are going to become the next wave of academic leaders. And so just to be able to have grown a relationship and a partnership with Allison and to have her leading some of our programs. I am just so, I have always been in awe of the kind of magnetism and the fierceness that is Allison Kessler, but I'm just so in awe of working with her every day and what she's delivering to medicine and the education. I don't think any of us can argue that point.
SKORTON: Dr. Kessler, if you would tell us a bit about your own journey into medicine.
KESSLER: That is a very long discussion. So, I guess, can you, can we narrow the field of question a little bit?
SKORTON: Yeah, you tell us whatever you would like to about any aspect of it. I think our listeners would find that of great value and great instruction.
KESSLER: So, I grew up with two parents who are physicians. My dad is a neurologist and my mom's an OB-GYN. And I always loved science, I always loved medicine, but I was actually going to be a vet, or at least that's what I told myself I was gonna be a vet, until I had my own spinal cord injury. And after that, through self-reflection, through high school, through college, when you kind of look at your future life and you say, what do I want to do, who do I want to be, and how do I want to do that? I realized that I was in this unique position as a person with a disability who had lived on the patient side of things to use my love of science, my love of medicine, to go to medical school and be able to help other people who perhaps would have a similar injury. At that point, I wasn't sure if I would go into physical medicine and rehabilitation or not. But I knew that I was uniquely poised to say, I can do both. And so shouldn't I use that to be able to help other people? And so I changed from wanting to be an animal doctor to wanting to be a human doctor because I felt that I had that unique perspective.
Now, going back to Dr. Meeks' earlier discussion, I was ableist at the time. I tried to hide my disability because I didn't feel like people would accept me when I was applying to medical school. And now I knew I had an uphill battle. but I also believed that I could do it and that there was nothing about my disability that would prevent me from being a good physician. But I knew that I had to convince other people of that as well. And I was young and naive and I didn't think the world was ready for people to be out and proud, if that makes sense, about their disability. And so I tried to kind of minimize it and say, oh, don't worry, I'll be able to do everything. I'm not going to, as Dr. Meek said, I'm not going to be a problem for you. I'm not going to make waves in your medical school. I can do all of these things, it’s ok.
So, what I would tell younger me is I do wish that I had embraced that part of my identity sooner. As I said, it wasn't really until people asked me to talk about it that I had to have that introspective thought of why did I feel the need to hide it? Because I shouldn't have had to. And that was part of the discussion when Dr. Meeks was doing her original work. When she interviewed me, I thought long and hard about it later. And I said, you know, the same reason you decided to go into medicine is why you need to start doing things like this podcast, which is why you need to start building disability curriculum, because there are so few people that have that lens that I would be wasting it if I kept it to myself and that it's up to me to push myself out of my comfort zone and to embrace. my own ableism and say, I'm not afraid of my identity. I embrace my identity as a woman, as a mother, as a physician, as a person with a disability. And those are all wonderful, beautiful things about me. And I need to tell everybody else that they can have wonderful, beautiful colleagues that have disabilities as well.
SKORTON: Dr. Kessler, Dr. Meeks, thank you. This was a fabulous conversation. I learned so much from both of you, and I know that's gonna be true for our listeners as well. Now we're gonna bring back our fantastic producer, Rachel Bunn, to close us out. Rachel, over to you.
BUNN: Thanks, David. So, we've had such a great discussion here today. And we are about to have more great discussion because we're going to do our favorite segment here on “Beyond the White Coat,” which is prescription for relaxation. We ask all of our guests, what will you prescribe us this week to help us unwind, relax, and have some fun? So, I'm going to start with you, Dr. Kessler. What would you prescribe to us this week as your prescription for relaxation?
KESSLER: This is Thanksgiving week, so I would say for relaxation is after you have your feast, allow yourself that nap. Take a step away from all of the people around you, let the food digest in your stomach, and take a nap if you can. This is why I'm going to my parents' house so that they can watch my three-year-old and my six-year-old so I can take that nap.
BUNN: That is such a good prescription. And yes, I will definitely be taking a nap myself on your advice. Dr. Meeks, what would you prescribe to us this week?
MEEKS: Ok, well, I'm going to build on Allison's Thanksgiving theme. I am that grandparent. And I know the joy my seven-year-old grandson brings me. He is my favorite human in the entire world. His name is Charlie Rabinovich. I think you should engage with children. Put your phone down, first of all. Turn it off for that matter. Turn it off. Engage with a child during Thanksgiving because to see the world, if only for 20 minutes, 30 minutes, through the eyes of a child, someone who is not yet cynical, someone who is not watching the world on fire, someone who believes that just everything is magical and every day it's a new discovery. There is a magic in that interaction that I cannot describe fully, that brings me so much joy. And so, turn your phone off and be around a child, a young child, and see the world through their lens.
BUNN: That is such an excellent thing. I even just, if you can't be around a child, just turning your phone off and spending time together is such a great prescription. And finally, David, what's your prescription for us?
SKORTON: So, our producer knows that my prescriptions always have to do with music. And so, Rachel, this is something even you don't know, that I've taken up a new instrument and I'm failing miserably to be able to do anything with it. It's a Japanese flute called a shakuhachi. And I'm really struggling with it. But if you can find some Japanese shakuhachi music, it is incredibly soulful, relaxing, it'll lead you Dr. Kessler into that nap you’re talking about. Will make, Dr. Meeks, those kids really happy by the sound of it. And if you do find some shakuhachi music, just think with a little giggle in your voice that David Skorton is struggling and cannot get a sound out of this thing, But I'm gonna be listening to someone who knows how to blow this instrument, make it sing. Back to you, Rachel. By the way, turnabout is fair play. What is your prescription, Rachel Bunn?
BUNN: You know what? That's a great question, David. And I'm gonna stay thematic. I am here spending time with my grandmother. I'm at her house this week. And I would say, if you can't spend time with a child. Perhaps you should spend time with a parent, a grandparent, another family member, because it has been such a joy to spend some time with one of my favorite people in the entire world. And so that would be what I would recommend to everybody else. Spend some time with someone who you love.
And with that, I'm going to close us out for this week. Thank you all for joining us. This has been such a delightful conversation. Thank you both, Dr. Meeks, Dr. Kessler, for being our guests. “Beyond the White Coat” is hosted by David J. Skorton, and our executive producer is Zenneia McLendon. Our project manager is Brittany Loca. This episode was produced by me, Rachel Bunn, and edited and engineered by Laura Zelaya and De'Angello Powe. Elena Marinaccio is our copy editor and De'Angello Powe made all of our graphics. Our sound design is by De'Angello Powe and David J. Skorton playing his flute, even though he just said he is struggling with one. He is playing his flute. And Aaron Dillard also provided additional support for this episode. Thank you for being one of our listeners and we will see you next time.