Episode 33: Dr. Cori Poffenberger and Richie Sapp

Docs With Disabilities Podcast Episode 33: Cori Poffenberger, MD, and med student Richie Sapp. Leaders in disability advocacy Stanford University School of Medicine. Stanford Medicine Abilities Coalition. U-M Medical School Family Medicine

Dynamic Duo Dr. Cori Poffenger and med student Richie Sapp, leaders in disability advocacy at Stanford Medicine, talk with Dr. Peter Poullos about what drew them to their work in disability education, the curricula they developed and implemented to teach med students how to better care for patients with disabilities, and the impact of amplifying the voices of patients, faculty, med students, and healthcare providers with disabilities.

Guests

Podcast Co-host, Peter Poullos, MD, Clinical Associate Professor of Radiology, Stanford Medicine and Founder and Director, Stanford Medicine Abilities Coalition (SMAC). 

Cori Poffenberger, Clinical Associate Professor and Director of Faculty Development and Wellness for the Department of Emergency Medicine at Stanford University School of Medicine, soon to be at the University of New Mexico.

Richie Sapp, MS, MD Candidate 2021 - Medical Student, Stanford School of Medicine, rising Emergency Medicine resident at Harvard, Leader in disability advocacy at Stanford Medicine.

Transcript

Peter Poullos:

Doctors with disabilities exist in small but impactful numbers. How do they navigate their journey? What are the challenges? What are the benefits to patients and to their peers? And what can we learn from their experiences? Join us as we explore the stories of doctors, PAs, nurses, OTS, PTs, pharmacists, dentists, and other health professionals with disabilities. We'll also be interviewing the researchers and policymakers that drive medicine forward towards real equity and inclusion. I am Peter Poullos, and I am thrilled to bring you the Docs with Disabilities podcast.

For this Docs with Disabilities podcast, we're going to be interviewing Richie Sapp and Dr. Cori Poffenberger, both of Stanford University School of Medicine. Dr. Cori Poffenberger is a Clinical Associate Professor and Director of Faculty Development and Wellness for the Department of Emergency Medicine at Stanford University School of Medicine. Her professional interests are focused on physician wellness and diversity and inclusion, specifically related to disability. Her work focuses on medical student and physician education on how to provide more effective, compassionate, and culturally sensitive care to individuals with disabilities. In 2019, she was awarded the Rathmann Family Foundation Fellowship in patient centered care at the Stanford School of Medicine to support her work on developing comprehensive competency-based education around disability for medical students. She also lectured nationally to physicians in emergency medicine on this topic. Cori is a member of the SMAC Board of Directors and a good friend. 

Richard Sapp is a medical student at Stanford School of Medicine. He has been involved in leadership in many disability advocacy groups at Stanford, including Kids with Dreams, Stanford Disability Initiative, Stanford Disability Coalition, Medical Students with Disabilities and Chronic Illness, and Stanford Medicine Abilities Coalition. He has implemented multiple courses on disability education at Stanford, including Diverse Perspectives on Disabilities and Caring for Individuals with Disabilities, and has performed research in curriculum evaluation. He is passionate about medical education, social determinants of health, design thinking with plans for advocacy for individuals with disabilities throughout his medical career. Richie will be starting his residency in emergency medicine in Boston starting in July 2021.

I wanted to interview Cori and Richie, because they have been real leaders at Stanford, in developing curricula to teach medical students about taking better care of patients with disabilities, and also advocating for physicians and providers with disabilities. I met both of you around the time that SMAC was being formed and you were both instrumental in the formation of the group. 

Cori, you and I met at the Stanford Disability Initiative event during Alumni Weekend. I was very stressed out with this task that I had been given to start a disability organization and so I was thrilled to know that there was somebody in the medical school that was already working this arena and could help me out. And then Richie, I met you, for the first time, I think in my office when you came over with the other MSDCI founders to also fill me in on the state of disability at Stanford Medicine. And then Richie, you and I got to know each other much better in Washington, DC when we attended the Coalition Conference. That's when we switched from Dr. Poullos to Pete.

I guess, Cori, I'll start with you. Can you tell me what got you interested in teaching students about caring for patients with disabilities?

Cori Poffenberger:
Definitely. I didn't have any experience in teaching about disabilities prior to about four or five years ago. And I really became interested in disability education because of my experiences with my daughter who is eight now and has a physical disability and uses a wheelchair. And, you know, in interacting with people outside of medicine and within medicine, I just began to realize that wow nobody really knows the impact of what they're saying or the impact of their actions, people don't understand how to interact with a person with a disability or a family member of someone. And I started to realize that I, that my training in medicine, had been incomplete in this area - that I really never got any education in medical school or residency on how to care for people with disabilities, what is the experience of people with disabilities in healthcare? And I felt like that was a major gap in my education and so I set out to kind of educate myself and then to work toward improving education for others.

 

Peter Poullos:
I've heard you mention your daughter in the multiple times where I've had occasion to hear you speak. Can you give me some examples of instances where the care or the treatment or just the interaction with you and your daughter was not up to par?

Cori Poffenberger:
Sure. Yes. My experience has always been that healthcare providers and physicians are very well-meaning, but that they just don't seem to understand the experience of disability or the impact of what they might say or might be doing. For example, one of the experiences that stands out the most was we were seeing one of her doctors who I really like, and we were talking about some hard things related to her health and whether she might need a surgery and things like that. And at the end of the encounter, he said, "thank you for taking care of her." And I think he was trying to show support. It's hard when you have a child who might need surgery and dealing with all of this, that's what his intention was, and you know, we still see him.

 I still think he's a great doctor and I respect him, but the impact of those words on me were that, oh, she must be a burden. It's so hard. I feel bad for you that you have to take care of her, or your life must be so challenging having a child with a disability. And so that was just one example of something that really hit home. And I think even at the time, I didn't even realize how much it upset me until I started thinking about it later and really thought, wow, that was definitely not the right thing to say. Would you ever say that to a parent of a child who doesn't have a disability? You wouldn't say that. No one's ever said to me about my other children, thank you for taking care of him. It's just assumed that, of course you're going to take care of your children without disabilities, but for your children with disabilities, you're really going the extra mile.

Peter Poullos:

I can imagine. Has she ever felt a negative impact of an interaction or are these things a little beyond her comprehension at that age?

Cori Poffenberger:
I think they're still a little beyond her comprehension. You know, she thinks of all of her doctors as her best friends, and she's always excited to see them as long as they're not going to give her a shot or something. So, I don't know that she's aware of it. The other interactions or the other challenges that kind of stick out are more about the lack of accessibility, even of offices for someone with a physical disability. So, her pediatrician's office doesn't have a wheelchair accessible scale and she struggles a bit with weight gain. So, then we're trying to figure out how do we accurately measure her weight. There's been things like that that just make you realize that the system's not set up to care for people with disabilities.

Peter Poullos:

Richie, I know you also have some family history that led to your being interested in helping the disability community. Can you tell us about that?

Richie Sapp:
Yeah. Thanks Pete, for asking. So yeah, the reason I got interested in working with the disability community, being an advocate, and getting into disability education was growing up with my twin brother, Mikey. And when I was a little kid, we didn't go to school together because in England, at the time there were specific schools for people with disabilities and, you know, I was not attending that school. And all I really wanted to do was spend time with him, so I got involved with his school during elementary school. I was fortunate to be able to participate in inclusive theater with him in London. And when I came to America, a big thing for me was wanting to go to high school with him. So, I ended up going to a big public high school. I found out that even though they promoted inclusion in the classroom, there was really nothing outside the classroom that was focusing on inclusion.

So that's when I started really getting involved with developing community programs to make sure that people with disabilities and for him, he has an intellectual and developmental disability, that he's included in the school community. For me, that's sort of how I got invested in the disability community. And then when I went to college, I continued that work through a program called Kids with Dreams. And then I also wanted for my learning to learn more about disability in general. And then when I was searching through the coursework at Stanford, overall, we didn't really have many classes talking and teaching about disability, which I was bummed about because I was excited to learn how do I become a better advocate. So, I ended up working with a couple faculty members on the undergraduate side to put together a course called Diverse Perspectives with Disabilities to try and see how can we get other undergraduate students engaged and interested in what's going on in disability rights, disability, justice, disability ethics.

And that sort of came when I finally got to medical school, I was very excited to come here. And there was also not really a lot going on, on the medical school side here at Stanford School of Medicine, either. For me, that was so important just because of my personal experiences growing up with Mikey. I've seen times with him where doctors don't introduce themselves to him or ignore him completely. My brother is nonverbal. He has different methods of communication. A lot of it is gesturing. Some of it is using PEC symbols to put together sentences to communicate and a lot of the time providers, in such haste, will go straight to my mom, for example, to answer questions without even introducing or engaging with my brother who is the patient themselves. Additionally, by getting to work with people in the disability community through a lot of these community programs that I put together, I also got a chance to hear a lot of stories from families and individuals about positive healthcare experiences and negative healthcare experiences. I did a bunch of interviewing myself and did surveys to try and find out what were commonalities with those experiences, and I realized there's a lot of healthcare disparities for this population. And I wanted to share my personal experiences and all these families who really want to teach medical students with this curriculum that we've been trying to put together at Stanford.

Peter Poullos:
Yeah, that's really interesting. It seems like a lot of the people who do this work have a very personal tie to it, either disability themselves or in a close family member. I would like to hear about how you two met and started working together.

Cori Poffenberger:
I reached out when I decided that I wanted to get involved with disability education at Stanford. I reached out to some people in the School of Medicine and was connected to some faculty in POM who, and we met to kind of hold initial meetings.

Peter Poullos:
And just to clarify, POM is Practice of Medicine, right 

Cori Poffenberger:
Yes. Practice of Medicine is a course for first- and second-year medical students where a lot of these skills like caring for different populations are taught. And so, they were interested in putting together a session. I think that's how you got involved, right Richie?

Richie Sapp:

Yeah. I actually separately approached them, realizing, just reviewing the curriculum and asking some upper medical students who were further along in their education, if they've gotten any training. Got a really great group together and that's where I got a chance to meet you, Cori. And I think we've gotten to do a lot of great stuff since then, too.

Peter Poullos:

I don't think you guys have done anything that great.

Richie Sapp:
Thanks, Pete.

Peter Poullos:
I mean, let's not get carried away.

Cori Poffenberger:
So yes, it went over really well. All the students gave great feedback. We had the amazing community partners. We should say that a big part of our design of that course was working with community partners with disabilities to design the course. Our structure included a short kind of didactic and then a patient panel where they could share their experiences with disabilities in healthcare. And then we broke the students into small groups where in each small group has a faculty member as well as a disability community member to go over some example cases and share perspectives and have discussion on what are the pertinent learning points related to disability in those cases. And the students really loved it and gave us great feedback on the session. 

Richie Sapp:
Yeah. And to add to that, I think the students love hearing the individual's perspective and that's the part of the course that they always highlight the most. It's really tough to try and cram a lot of things about disability health in, into two hours. So, you know, we try our best at giving a broad overview and bringing a very diverse group of people in to be on that panel with a variety of different disabilities, whether that's invisible or visible disabilities, and with varying degrees of perspectives, with positive and negative experiences that they've had with the healthcare system. One of the most important things that we got feedback from students on was the first couple of years, we only had community members with disabilities represented on the panel and their feedback was we would like to see more representation of faculty and medical students with disabilities.

And I think that was a really important improvement in that session because it didn't sort of display that disability is something outside of the medical community and creating this idea of this is who we are here and there's this other population. It was really essential in showing that disability is everywhere and that there's disability within our own community at the medical school. And to sort of highlight that these experiences are important to advocate for our patients, but to advocate for our coworkers, to advocate for everyone. I think that was something that's important. Looking through the literature, there's other schools who do panels and I think one thing that we've learned very well from that, you know, if other people who are listening, is to involve people with disabilities, who are medical students, and faculty, and other healthcare providers, when talking about disability health. And our hope is that, the idea is that, people understand disability from the correct perspective.

Oftentimes our medical system has taught, somewhat about disability for a long time, in the context of disease and thinking about how do we cure people, how do we fix people, but not in this idea of disability as diversity, disability, as an identity, disability as something separate from illness. Sometimes there's overlap. Sometimes it's completely separate, but having students introduced to this perspective as a social model of disability is one of the big things that we want to get across in this two-hour session. And for people to hear the stories that, you know, there's a lot of complexity that comes along with having disability, from access to care, inequities, a lot of hidden things that people do on a daily basis. And for the students to get to hear those things is a really important aspect of that session. And the students love it.
And you know, when we actually did the surveys after the course of the first and second years that we did, students overwhelmingly wanted more material about disability. So that's in part why we wanted to create an elective course as well to see what sort of other opportunities could we give to students to learn more. We had that two-hour session in the first year of POM, but we also wanted to get more in the mandatory curriculum. So, part of it was, we wanted to do the elective course to showcase how important some of this material was, what did the students learn from it, and can we get more of that material into the mandatory curriculum as well?

Peter Poullos:
Anything to add to that, Cori?

Cori Poffenberger:
Yeah, I would just agree with what Richie said. I think when students think about, you know, they spend a lot of time in their first- and second-year learning about the normal functions of the body and then what happens when there is illness or disease. And I think that thinking about it more from the human perspective, thinking about disability from the human perspective and being able to put a face to some of these things that maybe they've heard about in class, but they've never seen a patient with, you can kind of see them, all of a sudden, become more aware of a different experience. And that it's not just all about the medicine, and as Richie very eloquently put, it's not about illness. We tend to medicalize disability pretty substantially, and this gives them more of that social perspective. And what is the experience and how do we create a healthcare system that is supportive and inclusive without making everything about the medical situation.

Peter Poullos:
Can you tell us a bit more about the structure of the 10-week course? 

Richie Sapp:
Yeah, absolutely. So, the 10-week course has a variety of different sessions. The first session is basically an introduction session to sort of go through the models of disability. But a lot of it also focuses on the history of disability in America, which I think is a really important perspective for medical students to learn, especially because there's a lot of mistrust in the disability community with the healthcare system, with the idea that we had institutions for a long period of time, there was a whole eugenics movement that came out of the US and people have been wary of interactions with doctors, or how do people think about quality of life? So learning that perspective from a historical standpoint, I think is really important for the students to learn about, to understand why there might be mistrust.

In that first session we also try and lay out groundwork of talking about language that surrounds disability, just because the words that we use are very impactful and also how we say things also can influence how do we perceive things. So, we sort of try and lay out what language is used in the disability community at this point in time. It's ever changing, but it's always a great place to try and establish a foundation so that people can feel comfortable talking about things throughout the course. In later sessions, the next couple of sessions, we actually have a lot of people to come in with their personal experience and talking about things about disability in general, but also their experiences with the healthcare system. And there's two separate sessions, one is with individuals with disabilities and the other is parents and caregivers and family members of loved ones who have disabilities as well. And it's interesting because there's a lot of different perspectives to compare in those communities. There's also some differences between those perspectives as well.

And then later on, we have a couple other sessions that focus on disability and ethics to focus on the importance of determining capacity and shared decision-making. I meant supported decision-making in contrast to shared decision-making.

Peter Poullos:

What’s the difference?

Richie Sapp:
So supported decision-making is really making sure that no matter what, an individual with disability is involved in their healthcare and able to make decisions throughout the process. You know, there is a bit of a contentious aspect in states with disability rights advocates of conservatorship and guardianship along with in medical decision-making. So, it's sort of this aspect of allowing a person with a disability to be able to be included throughout the process and making sure that you're making all the accommodative needs and thinking about inclusion before making any sort of assumptions about their care.

Cori Poffenberger:

We tend to think about it as you either have decision making capacity or you don't, but that's not a black and white situation, right? And so, for example, someone with an intellectual disability may be able to make many of their decisions. And so, it's about going a little bit farther in terms of providing the accommodations that an individual with a disability might need in order to contribute to those decisions and to participate in their own care, providing them with whatever supports that they might need to have that contributory ability. 

Peter Poullos:
That’s supported decision-making making as opposed to shared decision-making. 

Cori Poffenberger:
Right. Shared decision-making is not bad, right? That's what we normally talk about doing as a physician: you are my patient, we discuss it, and we together kind of come to a decision about what is best for you based on what your priorities are and what I, as a healthcare provider, think that might work best for you. But supported decision-making is just another step where you're providing additional resources or supports in order to help someone participate in the decision-making process.

Richie Sapp:
And then to further continue just to finish a couple of the things about the class to finish it off. So, we have a couple more sessions where we have small groups and discuss about ethics cases and that sort of thing. But I think the real powerful part of the course are the workshops that we do. So, there's the communications workshop where individuals with a variety of different communication abilities, whether that's either having something from a motor function standpoint, dysarthria, so maybe it takes someone a little bit more difficulty to speak what they're trying to say and communicate, or people who use machines to communicate, or symbols, or we also had someone who used American Sign Language, as a way of, for the students to feel more confident in gathering histories and having those experiences with a variety of different communication abilities and they can utilize different techniques to communicate effectively.

Additionally, there's also a physical exams workshop where we focus on how do we go about talking about accommodations of the physical exam? What sort of accommodations should we be thinking about? And then one other aspect of the course is there's also the patient-partner program where each student is paired up, one-on-one with an individual with a disability in the community, where they'll spend time in their homes, visiting a doctor's appointment with them, going to work, and better understanding what's it like on a day-to-day basis, learning about accommodations, learning about where are there disparities, where are some of the hidden things that people do on a day-to-day basis that you might not otherwise know? And then we would also have them practice doing a history and a physical exam, if the partners felt comfortable on their own time, because in these class sessions, we don't have all the time in the world. So that gave them another opportunity to gain that experience.

Cori Poffenberger:
And I think that Richie's right, that those workshop experiences are really one of the highest value things in our elective, because I think our students and our physicians, everybody has good intentions, but if you don't have experience or you don't have training, then you feel uncomfortable and you're worried you're going to do something wrong, or you're worried, you're going to say the wrong thing. And then that actually might make you more prone to say the wrong thing or less likely to be open to hearing the patient's experience. And so, by having these interactions in a very safe learning environment, where our patients who are participating are really comfortable working with the medical students and sharing with them what they're doing right and what they're doing wrong, the medical students then feel, wow, okay, I am feeling way more comfortable, and I know what to do in my future interactions.

 

Richie Sapp:
I think the most rewarding thing for putting the course together is the fact that I've heard from medical students going to their third and fourth years when they're actually being in the clinical setting, coming back and telling me stories of how they've actually utilized some of those communication techniques. I remember one student telling me about how there was a patient who was hard of hearing. They were really struggling to express themselves and the providers were struggling to understand what they were trying to get across. And the student brilliantly got out an iPhone app, and it was a voice to text software, popped it up on their phone, and the communication between the providers and the patient just improved immensely. Another story I heard from another student was there was a patient that they were seeing who was non-verbal. And they took the time to sit with the patient and they went through a lot of the techniques that we teach in the class of, well, how do you establish communication and going through trying to establish a yes-no process of how does someone say yes, how does someone say no, going through different indications of writing things down so that someone could see it, or maybe utilizing someone to write something. Having the toolkit, students felt much more confident, and they thought that it was a real benefit to the patient's care. So, I think that was an incredibly rewarding aspect of hearing how the course has affected medical students.

Peter Poullos:
What sort of resistance have you encountered along the way and how did you either skirt around it or, or overcome it? What advice would you give to people who are getting pushback on these issues from people who think that yes, it's important, but there are other things that are more important.

Cori Poffenberger:
I will say the one thing that I think is still a challenge is just finding time in medical school curricula to have more content. We still haven't gotten, at Stanford, past two hours in the required curriculum. And then we have this elective and, you know, there are so many things that medical schools are trying to do these days and trying to teach. And I think that's the challenge - is finding a way to get more disability content incorporated into the required curriculum. One key strategy is to see if you can get a little bit of time and then measure it, so that you can show them that it has this impact, that it is positive. Medical students are really the people who can help drive these changes. So, if you show that it's impactful for the students, that the students really enjoy the session, that they want more content, or if you have students who are advocates at your school who can help you have those conversations, I think that's a great starting point.

There's plenty of literature out there about the benefit of including disability in the curriculum and different examples of the ways to do it. And then I think the other thing which we're trying to do still at Stanford is finding places where you can incorporate it into existing structures that maybe you don't need as much extra time, but it can be taught alongside another topic so that you're getting double the benefit. My concern is just that our students get it in the first year, or a little bit in their second year if they take the elective, but then they might not get refreshers or further interactions that help kind of drive that learning home.

Richie Sapp:
I think there's definitely a lot of places where it can be included in the curriculum. We are trying to have discussions about including how do you be more accommodating when the students first learn about taking a history and doing a physical exam and making sure those concepts are included in those sessions. One difficulty that we have faced is the idea of standardized patients. So, in the literature, it's actually not good to use actors playing people with disabilities. They have found that in those standardized patient sessions, the students do not get the right message out of it. And if they know that the person doesn't have a disability, it kind of defeats the whole purpose of that – the intention of trying to create a learning environment where you practice accommodation skills with a quote unquote person with a disability. But, you know, we also face issues with that it's a union of actors and trying to discuss with the mandatory curriculum, can we have people with disabilities be a part of the standard, sort of the quote unquote standardized patient curriculum, or we might be able to use a different word, simulated patient curriculum. There has been some resistance and difficulty with trying to get that incorporated into the main curriculum

Peter Poullos:
Resistance from the actors’ union.

Richie Sapp:
Yeah, potentially, but also, I've presented this as something that I'm really interested in, but there hasn't been a group of people to come together, like, oh, this is a way that we could add an extra session and not impinge upon the actors’ union. There's been a sort of a lack of creativity of thinking about how can we incorporate this patient population into some more sort of standardized ways of practicing physical exam skills and history taking? So that's why we do a lot of it in the elective course.

Cori Poffenberger:
Like we said, I think that those sessions are what we feel is one of the greatest values of the elective course. And if we can't give them all of the content of the elective course, if we could give students the experience of having those personal interactions and practice, we feel like that would go a long way toward improving comfort and reducing anxiety and increasing skill. But it's a question of how do you logistically achieve that?

Richie Sapp:

There has been a recent paper that came out suggesting how do you incorporate disability into core EPAs for medical students, so I definitely think that one's worth, for anyone who's listening, to take a look at. The name of the author of that paper is Nethra Ankam. They suggest ways of how you actually change different parts of the EPAs to include disability. We can have all the different cases that we go through in the clinical reasoning sessions include something about disability. Or make sure that you're including diverse patients of different races and LGBTQ status, make that relevant or not relevant to the case, so that the students don't necessarily trigger them in their mind that, oh, that's going to be something that's a part of that case. But sort of normalize that you're going to have lots of different patients when you go to the clinical world.

I think also another big, important thing in terms of the curriculum is to teach people when they're doing sessions on pathophysiology and teaching about disease, about how do they actually frame disease. Because I've heard from a lot of the medical students, people kind of get upset when assumptions are made about quality of life when someone in the auditorium listening to the lecture has that exact disability. There’s a part about also educating people who are in medical education, how do we talk about disability and making sure that when we're framing things that we're teaching about, we are not just incorporating that medical aspect, but also the social aspect of that disability.

Peter Poullos:
How much of an effort have you guys made to disseminate what you've done so far in terms of like writing it up, publishing, speaking at national meetings? Not that there have been any for the last year.

Richie Sapp:
The first course was taught back in 2019 and we evaluated the course, and we were able to show it was very effective at improving medical students' attitudes towards individuals with disabilities. The two-hour session, we were able to show that we were able to have an improvement in attitudes and that those attitudes actually stayed long past after the course was completed. So, we surveyed students before, about eight weeks after they had that two-hour course, and then three months after that. And then for the elective course, there was a much, much larger improvement in attitudes. Both of the groups were at baseline at the very beginning, which I think in part was more experience, more exposure. The big thing was that there was a reduction in anxiety of working with people with disabilities, which is one of the other things that we measured. And we didn't see that with a two-hour session.

And I think a lot of that was having these really meaningful interactions and having the safe environment to just talk about disability, to practice the physical exam and the history taking skills. That sort of data we've presented already at national conferences. We presented at multiple local Stanford conferences, which were national ones. We also presented at the American Academy of Developmental Disability in Dentistry back in 2019. And also, we'll be presenting some of the data again, especially with some of this delayed survey data showing that the course had sustained efficacy at the 2021 STFM conference, which is the Society of Teachers and Family Medicine Conference, which will be in February. We’ll be presenting a poster there as well. In terms of a manuscript, we are well underway in making our manuscript and we'll hopefully have it published within the next three to four months. 

Peter Poullos:
You guys did publish something relatively recently in the SAEM. What does SAEM stand for? Society of Academic Emergency Medicine?

Cori Poffenberger:
Yes, correct.

Peter Poullos:
Good. Yeah. I've also published in this same journal, which I cannot recall the name of.

Richie Sapp:
Your article was great. Pete.

Peter Poullos:
Thank you. You know, one of the things that I found interesting about your article was talking about the difference between cultural competency and cultural humility. And I think that distinction is really interesting. And I was wondering Cori, if you could explain that?

Cori Poffenberger:
The idea of cultural competency implies that you can really know another culture that you're not a member of, and that you can learn some specific set of skills that then make you competent to interact with people from that culture. I think more and more people are realizing that's kind of a false construct and that really what we should be practicing is cultural humility, because if you're not a member of a particular culture, how can you know that culture completely. Or rather than saying, I'm going to learn X, Y, Z, and be competent, instead approaching it from the stance of humility and saying, you have a lot to teach me about your culture, and I am not a member of it, so share with me what I need to know about your culture. And always acting from that space of saying that my knowledge is going to be partial since I'm not a member of this group, and I'm going to defer to them on what I should be doing and how these interactions should be taking place. So, it's placing the power within the group where it should be, which is the culture that you're interacting with and proceeding from a place of humility 

Richie Sapp:
I think that's why it's so important for any time we're creating curricular interventions in the medical school to have the populations that we are teaching about be involved in the process of developing the curriculum. It’s not just the disability community, but it's also the LGBT community. It's when we talk about race, when we talk about specific medical conditions as well. I think one thing in medical education is it always come a lot from the experts in the field, quote, unquote, you know, the physicians, the people who are teaching the medical students, but I think there's so much that we need to take the time to learn from our patients and our communities. I think with all curricular interventions, especially the ones with disability, what we've been doing with disability curriculum, having people involved from every stage, when that's first coming up with the needs assessment, first coming up with the course or the sessions, and then having people involved in the teaching of it as well, and also evaluating how do we improve upon it? I think that's, that's where the cultural humility comes in because the goal with cultural humility is that we're all trying to get better. We do need to teach enough to give people foundations, but it's the mindset that will give you foundations, but there's always going to be this ever-learning process. And we want you to be able to feel confident in discussing these topics with your patients.

Peter Poullos:
Nothing about us

Cori Poffenberger:
Without us

Richie Sapp:

Without us

Peter Poullos:

Thank you.

Now, from what I understand, you guys don't have disabilities.

Cori Poffenberger:
I'm well aware of what you bring up Pete, which is that I'm an ally, I'm an advocate, but I am not a member of the disability community, myself, and advocate for more inclusion of people with disabilities in medicine. That's been a big part of what Richie and I have worked for also because I've had people ask me, should you be the one giving this lecture, or should someone with a disability be giving this lecture? And I say, I would love for someone with a disability to be giving this lecture. I'll hand them the reins. They have to tell me they want it and I'll give it to them.

Richie Sapp:
I completely agree, Cori. What I found is lot of the stuff that I've tried to start up, I would love to include more people. Especially in medicine, we have an issue of the pipeline to medicine. There's a lot of ableism in medicine that's entrenched with the medical model of disability that we were talking about earlier. And for students to get into medical school, they've created these guidelines, these technical standards that were written in quite an ableist way and with the mindset of people who are physicians are like superheroes and can do everything and that sort of idea. And we're not getting the full experience and we're not getting everyone that we need to get into medical school. And that's not just people with disabilities, but also, you know, underrepresented, that sort of thing as well. But the technical standards have been something that's greatly affected people with disability specifically. And there's a lot of bias towards people with disabilities, once they're even in medical school, about what they are capable of and what they're not capable of and assumptions that are made. And I think a part of this process of, you know, promoting education, the most important thing is also making sure that people with disabilities become healthcare providers - in all aspects of medicine - become professors, have voices that are going to lead the revolution in improving healthcare equity for people with disabilities.

Cori Poffenberger:
But, you know, what’s funny? I took, this isn't a total aside, but I did the implicit bias test, the Harvard one for disability. And I never did it before my daughter, so I have no baseline of comparison, right?  But it showed that I like disabled people more than I like non-disabled people[laughter]

Peter Poullos:
That’s really funny.

Cori Poffenberger:
That didn’t really surprise me [laughter] all the best people I know have disabilities. 

Peter Poullos:
That's right. That's how I feel also.I mean, we're just way more interesting. So many more layers. 

I like to joke that if I can just keep my current health status going until I'm 80 years old, my curve, my ambulation and function curve, will eventually intersect that of the declining curve of my age cohort. And then I'll finally be able bodied again in comparison.

Richie Sapp:
Well, so I actually think it's so interesting what you say Pete. I think to a certain degree, right, depending on what society you live in, certain groups can become more disabled than others based off of the structural inequities that exist. I think people don't realize that sometimes individual differences, if society wasn't set up for them to be more successful, that they could easily have a disability just because of the way society is structured.

Peter Poullos:
Yeah, we might be running into that sort of problem if this idea of like human augmentation continues along its present lines. I watched a documentary last night. It was basically talking about how we’re making a lot of technological breakthroughs that have the benefit, not only to people with disabilities, but those without disabilities, to improve their functioning.  Exoskeletons, for example, that you could wear that make it so that you can carry five times your weight in terms of a payload, or augmentation of sight with interocular implants. Also trying to improve humanity or human functioning could create a situation where people who are considered able-bodied today may for whatever reason, not be considered able-bodied in the future because they lack these enhancements. And even a situation where people with money would become more able-bodied than those without money, because those people wouldn't have access to the same types of enhancements, and how we could have this rat race in abilities. So, it's very interesting.

There was another something I wanted to ask you about. We seem to have, as a society or as a culture in medicine, a very narrow view of what able-bodied is. It's like we're only willing to take it out, maybe one or two standard deviations, but not necessarily beyond that. But it really is just a continuum, and it benefits everybody if we see all of humanity from say, maybe you consider the most disabled to the most abled, as one spectrum. And then also realizing that one person may have a disability in one area but may be hyper able in another. And that these comparisons of say physical or mental prowess are just meaningless, unless you're running an NFL franchise or you own a major league baseball team, you know? And, I mean, obviously people have to be able to do the work. You can't accept people to medical school who can't master the basic material, but we don't need to promote this idea of like what you're talking about, Richie, about this undifferentiated pluripotent superstar, who is excellent in all things. And we need to tolerate, not only tolerate, tolerate is the wrong word, we need to embrace making our med student classes look like society and look more like our patients and less like an Abercrombie and Fitch catalog.

Cori Poffenberger:
I think the thing we don't realize is that the culture of strength, which is partly what you're referring to in medicine, hurts us all, right?  It's that same culture that makes it impossible to call in sick if you have to or pushes you to work extra-long shifts and not take breaks, or to not eat or to not sleep. And you know, that's a culture that's been perpetuated over time, but that culture excludes people with disabilities and also harms the rest of us in terms of our wellness. And it harms all of us, whether you have a disability or you don't.

Peter Poullos:
And that was the question I was going to ask you. What do you think is the overlap or the interaction, the relationship, between your disability work and your work as the, I don't know your exact title, the wellness chief, chief wellness officer of ER, or what, [laughter] what are you? The most well

 

Cori Poffenberger:
I am the Wellbeing Director for the Emergency Medicine Department.

Peter Poullos:
The Wellbeing Director.

Cori Poffenberger:
Each department at Stanford has a wellbeing director. People have realized more and more over the last several years that these issues of equity and inclusion are completely wellness issues also. If you don't work in a place where you feel accepted and included, and like you can be part of a community, that you have the supports that you need, then you will not feel well, you will not be professionally fulfilled. And to me, those two interests fit together very nicely. Not all my wellness work incorporates my disability work, but I'm trying to kind of dovetail them more and more with some of the work that I'm doing. I'm on a committee that is dedicated to the respectful environment for medical students, which is a wellness issue, but also an issue of inclusion, and making sure that we're providing appropriate accommodations for students who need it. And so, I think more and more, people will be paying attention to the fact that the environment that we set up and the way that we support people is a huge factor in their wellness.

Peter Poullos:
Yes, I agree. I've made this point in some of the talks that I've had, that being kinder and more accepting and open-minded about all manner of things just benefits everybody. Think about just having time one afternoon to go to a doctor's appointment without getting in hot water with your supervisor. Or being able to take a couple days off when you lose your childcare and have to stay home. Flexible work arrangements and more humane relationships with our employers would also benefit those with disabilities and vice versa. How do you think we're doing at Stanford in that regard in the wellness domain?

Cori Poffenberger:
I think like any place, we have our strengths, and we have our challenges. Stanford is a very large academic institution and so sometimes that can make it a little challenging to find those kinds of supports, or those kinds of connections that you might want, to support inclusion. But I do think, you know, SMAC has been a huge benefit to Stanford, and I think that we're making a lot of strides in the right directions in terms of our equity and inclusion initiatives. But I do think that when it comes to particularly disability, we still are going to struggle because there aren't as many people with disabilities as there might be with other underrepresented identities. And so, we have to make sure that the voices are heard and that the foundations are being made in the right way.

Richie, should we talk a little bit about the surveys that we did for emergency medicine? That was another bit of research we did related to education on disability.

Peter Poullos:
Is it interesting?

Cori Poffenberger:
I think it is.

Peter Poullos:

Well, if it's interesting, let's talk about it. Tell me about this other research project.

Cori Poffenberger:
We did a survey study of emergency medicine residency program directors because we wanted to understand what types of education were emergency medicine residencies providing regarding disability. And so, we sent the survey out and one of the most interesting findings is we found that less than half of emergency medicine residencies have dedicated content related to disability in their curriculum for the residents. And I think that didn't surprise me based on my experience in academic emergency medicine, I know this is something that is not commonly talked about. And I think it's something that we're going to be hearing more about in terms of other GME programs because it's definitely an under-researched and underdeveloped area of disability education. So that was really interesting. Richie, do you want to add anything?

Richie Sapp
You know, there's been a lot more focus on the UME side when it comes to disability education and there's very little in the literature on the graduate medical education side, or even the continuing medical education side. And if we're going to try and educate all of our physicians, it's great that we're catching the medical students now, but there's a lot of physicians and other healthcare providers who could really benefit from this education. I think it's really exciting to sort of try and figure out on the GME side, can we make improvements there? I think it's especially relevant because there's not one specialty that's not going to see patients with disabilities. I think sometimes people tend to think that, oh, you might see more people with disabilities in neurology, or maybe even in pediatrics with developmental conditions. But the fact is, is that people with disabilities are in every specialty in medicine, you're going to see those patients and it's important to make sure that everyone's educated about it.

I think our goal is we're going to try and further figure out from the residents, where do they think their gaps are in their education about people with disabilities, creating core competencies to make sure they're hitting certain aspects in their education to have skills, and to learn that cultural humility that's so important. And it's important because we also went through the literature and found that people with disabilities utilize the emergency department more than the general population. I think that means emergency medicine residents need to be trained in this area, to be able to take care of all patients who walk through their door and be accommodating, but also sort of underlies the fact that we have major structural issues in our healthcare system when it comes to patients with disability.

I think it's an area that needs to definitely get more research and be further explored of how do we create places for people with disabilities to have established providers because a lot of the time, people with disabilities, that's one of the healthcare disparities. That they don't have a primary care provider that either will see them or has the accommodation needs, which they are required by law to do. So that's something that I also wanted to mention.

Cori, would you like to talk about the other aspects of our study of looking at residents with disabilities?

Cori Poffenberger:
So the other aspect that we looked at in our study was we asked program directors if they had any residents or faculty who identified with a disability in their program that they knew about. And we found a general incidence of about 4% for residents with disabilities, although that's probably highly under reported because we know that there are many barriers to disclosing a disability to your residency. But what was also interesting is we found that programs with residents or faculty with disabilities were more likely to have disability content in their curricula. It makes sense that those programs might be more interested in the topic, that they might have advocates that would be interested in having education on this topic. But I think it's just another example of how inclusion of people with disabilities in healthcare promotes greater education and more equity for our patients as well.

Richie Sapp:
Completely agree, Cori.

Peter Poullos:
Cori, you actually came up with the idea and the money creating an interactive sort of online teaching module on how to better accommodate students and other learners with disability in the clinical setting. What prompted that and how's it going so far?

Cori Poffenberger:
Yeah, so I think it was prompted by several things. Feedback from medical students was probably the first thing, that they felt that when they went to the clerkship experience, that the process of getting accommodations in the clerkship environment was not supportive, that it was sometimes frustrating, that it felt there was a lot of burden put on them in terms of educating others about the process, educating others about what they needed. They just weren't getting the support that they should be getting. It became really apparent, based on that feedback, and talking with various stakeholders, that just like we don't have enough training on caring for people with disabilities, if you've not provided accommodations for a learner or even a colleague in a clinical setting, then you might have no idea about what to do, how to be supportive, what types of things they might need and what is the process.

So, our goal is to kind of demystify the process and to educate faculty and residents or anyone who's really supporting learners, how to provide accommodations. And hopefully also educate them a little bit more about disabilities so that we can address some of those preexisting biases about what students with disabilities might be able to do or not able to do, for example, so that we can show the perspective of disability as an aspect of diversity and a valuable piece of our community. And that we really want to help our medical students with disabilities have a positive experience and go on to be successful.

Peter Poullos:
It’s been a real learning experience for me just creating those modules together. It's been a lot of fun designing the storyboards and the animations and all of the little quirky things that are going wrong. Like I was saying with hearing aids, floating around people instead of being in their ears and the difficulties in taking handles off of a wheelchair for a paraplegic patient who clearly would not have handles on their wheelchair. I think they're going to charge us extra to have a wheelchair that doesn't have handles on the back.

Cori Poffenberger:
Which is just another example of bias and lack of inclusion, right? They're like this animation software only has a power chair or a manual wheelchair that someone else has to push, because why would you ever consider that there might be a person who uses a manual wheelchair that they push themselves? You know, it’s just 

Peter Poullos:
Yup, beyond me. I can't really imagine a scenario where that would be necessary.

Peter Poullos:

Yeah, that was really good. It's always so fun seeing you guys.

Richie Sapp:
Yeah. It's super fun.

Peter Poullos:
You were both wonderful.

Cori Poffenberger:

Bye, guys

Peter Poullos:
Bye

Gillian Kumagai:

Thank you to Richie Sapp and Dr. Poffenberger for sharing your stories, your experiences, and the transformative work you're doing. Thanks to our audience for listening or reading along. We hope you'll subscribe to our podcast and join us next time.

Thanks to Vongai Christine Mlambo and Sarah Kate Selig for podcast prep and to our audio editor, Amy Hu.

This podcast is a production of the Stanford Medicine, Stanford Medical Abilities Coalition, and the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. The opinions on this podcast do not necessarily reflect those of the respective institutions It is released under a creative commons, attribution noncommercial, non-derivative license.This podcast was produced by Dr. Peter Poullos and Gillian Kumagai. 

Music Attributions:

  • Aspire” by Scott Holmes
  • Positive and Fun” by Scott Holmes