Disability and Medical Education, Part 1

Join us as we learn from Dr. Lisa Meeks, a leader on disabilities in medical education and our friend from the Docs with Disabilities podcast, which she founded and co-hosts. Dr. Meeks discusses the multifaceted aspects of disability identity, centering persons with disability in our language and conversations, and the challenges posed by disclosure.

Learning Objectives:

1. Evaluate the multifaceted aspects of disability identity, considering societal perceptions and personal experiences, to gain a deeper understanding of the challenges faced by individuals with disabilities.
2. Differentiate between identity-first and person-first language to foster inclusive and respectful interactions with individuals with disabilities.
3. Investigate the prevalence of disabilities among physicians, critically analyzing research findings and recognizing the challenges associated with disclosure, particularly focusing on intersectional factors such as race and gender.
4. Explore the intersectionality of disabilities within the healthcare context to gain insights into the unique challenges faced by individuals with multiple marginalized identities.

Credits:
Guest: Dr. Lisa Meeks
Host/Associate Producer: Dr. Candace Sprott
Executive Producer: Dr. Tammy Lin
Co-Executive Producers: Dr. Pooja Jaeel, Dr. Maggie Kozman
Production Assistants: Dr. Erynn Beeson, Dr. Andrea Anampa-Guzmán, Sanika Walimbe
Website/Art Design: Ann Truong
Music: Chris Dingman https://www.chrisdingman.com

Connect with us on Instagram at @thedayshift.pod and via email at thedayshifthealthcare@gmail.com

Transcript

[0:00] Dr. Candace Sprott: Welcome back to The DEI Shift. My name is Dr. Candace Sprott. I'm an internal medicine and pediatrics physician working in San Diego, California and I am an associate producer of The DEI Shift. I want to welcome Dr. Lisa Meeks to our show and share with you a little bit about her before she gets a chance to say hello. We're so excited to have [Dr. Meeks], who prefers to go by Lisa, we talked about this, as a PhD in urban education from Cleveland State University. [She] is an associate professor at the University of Michigan. She is an expert in disabilities in medical education. Her research informs policy and best practice in areas of disability inclusion for medical education, training, and practice. She is widely published and the co-developer of the AAMC Disability Webinar Series. She's the executive director of Docs with Disabilities Initiative and the co-host of a podcast, Docs with Disabilities. Lisa, welcome.

Lisa Meeks: Thank you so much. I'm really excited to be here.

[1:15] CS: And we're so happy to have you. Can you tell us just a little bit about yourself, the work you do, and how you got started in this area?

LM: Sure. My start was, I would say, very organic. I would be working with high school students. I was in private practice as a psychologist, psychometrician, diagnosing individuals with disabilities. And then I was also on faculty at the University of Alabama, and I have to do the, you know, roll tide, along with that. And so I was working with undergraduate students as well. And you know, the students that I worked with were brilliant and they had so much to offer. But for those that had disabilities, they really limited their possibilities for a career. I think, or maybe rather, their friends and faculty and society, limited it for them, right? Through the messages that they had been receiving their entire lives. And so many were drawn to medicine due to their experiences as a patient or having gone through psychotherapy. While they were drawn to it, they kind of never dared to dream of going to medical school. And I couldn't understand why such competent students who were excelling in every area of their life would be so limited. So I started asking questions, and really kind of pushing back against this overwhelming narrative of perfection, that we hold on to so dearly in medicine. But I will say there was a definite kind of pinpoint of when my career really took off and really became highly focused in this space. I had accepted a position at the University of California, San Francisco. It was a hybrid position doing disability resource professional work, facilitating access for medical students and also doing research, being on faculty, doing policy work. And under the incredible leadership and mentorship of not only my boss, Dr. Maxine Papadakis, but so many others at UCSF; I was able to really grow and was encouraged to set the national standards for access and medicine and conduct research in this space. So, I've been incredibly lucky. I like to say that I quit planning my life about 10 years ago because it never, you know, you make a plan and then none of it comes true. But I think the career that I have now is so rich and so beautiful. I really, I wake up every day and I can't believe I get to do this. And I could have never imagined that what I do would even be a job, right? What research professors do. And we have so much, I have so much privilege. I feel like being part of the University of Michigan and, and being able to put out this research and to put forward policy briefs and create change along with an incredible team of people. So that is, that kind of circles back to, you know, what we do. And of course this initiative is part of my research lab and the general umbrella of our work, which includes research and education and sharing of stories through our podcast. But it really is about building a more inclusive educational environment for trainees with disabilities and increasing the representation of disabled physicians, clinicians, scientists, you know, in the biomedical workforce. And, as you know, as this podcast really focuses on, it's not just one subset or one group of marginalized or minoritized individuals. Our team is committed across multiple identities. So, you know, for individuals who are underrepresented, for individuals who are part of the LGBTQ population, these are all intersectional identities that we also focus on as part of our anti-oppressive work.

CS: That sounds wonderful. And I love how it came from a lived experience that you had tapped into in your work and you moved all the way, almost like vertically integrating, I would say, through education and research and policymaking. Thank you for sharing that overview of your journey. I would like to briefly level-set about a few things and just at a basic level, can you talk a little bit about what it means to have a disability and what areas that may encompass?

[5:51] LM: Yeah, thank you. I've actually never had anyone ask me that question. So I really appreciate it because I think it's important. And I honestly think it impacts the data that we're collecting right now, to be honest, because, what does it mean to be disabled and do people identify as being a disabled person or a person with a disability and that's going to affect, right, how many people disclose, but I feel like the question almost requires some extensive reflection. I think, for me, when I started this work, I would, I didn't identify as disabled and as I head into my mid fifties, I have developed an autoimmune disease that is degenerative and will impact me more and more as I finish out my time on this earth. So I, I look at this and I think, you know, I have these two perspectives of, of what it means to be disabled, right? The law would define disability as a physical or mental impairment that substantially limits one or more major life activities. So this is something that is keeping you from being able to do your job, perhaps, or live your life effectively or fully engage in society. But some things kind of coexisting in that space, right? That's how society and so many of the barriers that we'll talk about today are our barriers that are actually caused by society and not by the person. So I could also see a situation where somebody would not identify as disabled because they're prevailing view would be that if society would shift a little or spaces were accessible I would not have these barriers to living my life, or engaging in my workplace, or whatever it happens to be, so I think people look at this very differently. I also think there's so much stigma, right? And there's so much bias and kind of negative perceptions against people with disabilities that people are very reticent to identify as disabled or to say I have a disability. And then of course society shapes what we all believe. And so if I were to go out, maybe downtown, I live in Cleveland, so if I were to go to downtown Cleveland and just ask the person on the street, what is a disability? I think the majority answer that I would receive is somebody that's you know, using a wheelchair or somebody that can't see, or somebody that can't hear. Right? It's that blue placard, kind of perception of disability. So, you know, to answer your question, I think it's again, something I've never been asked. I think it's a good question, but I think it depends on who you're asking. And I think it depends on the life experiences of those people, how their disability has shaped their perceptions when they became disabled. So somebody who's been disabled their entire life may view this very differently than someone who has acquired a disability recently. Someone with a cognitive disability, like a psychological disability, a learning disability, ADHD, something like that, may not view themselves as disabled. Somebody with a physical disability may say, well, I'm only disabled by society's restrictions on what I can participate in. So I, I think it's one of those complex questions, but it does bring us to this really interesting place of when we're doing research and we're saying, this is the number of people, or this is the percentage population who have disabilities, you start to see some of that nuance and wonder if we're fully capturing, right, everyone that, that is actually experiencing disability and all of its multiple forms.

CS: Such a layered kind of complicated answer based on a lot of factors, lived experience, societal barriers. So it really gives me a lot to think about because, just as you said, well, what qualifies you to have a handicap plaque or to have accessibility needs? And as you brought out, the legal definition I think is probably what most people who may not experience a disability are familiar with, but that's not the entire story.

LM: You know, I navigate my world 90 percent of the time without any needs, without any, just I almost forget, right? And then I'll wake up one day and I'll have these hands that I don't recognize, and I'll have these knees and ankle joints that I don't recognize, and I will require extensive intervention, you know, a huge dose of steroids or, you know, multiple self mitigating things, hot compresses, things of that nature. And then I'm reminded, right? And in those moments I can't type, I have to use voice dictation, which I'm terrible at. There are things I cannot do. So all of a sudden things that were not barriers to me previously become barriers for four weeks, six weeks, whatever, however long this flare is going to last. And I think so many people have that same experience because if you think about it, most individuals that have disabilities, especially the disabilities that we don't see, those psychological disabilities or chronic health disabilities will have periods of time where they're functioning is higher than other times. So they go back and forth between these spaces and sometimes back and forth between whether or not they're even identifying as having a disability. It's important to note that the law covers you regardless of whether you're in an episode. So if you're a person with a psychological disability that is impaired when your symptoms are active, you would still be covered from discrimination, even in non-active, you know, asymptomatic periods of time.

CS: Ah, I see. Something that I think of, and I'll just bring a little bit of my experience. I am a military spouse and so in the military community, which I think we'll get into a little bit from your paper, you know, there are many veterans who have disabilities that are not visible. And they have expressed to me, on private occasions, that they feel uncomfortable, you know, accessing handicapped or even accessible spaces because of the stigma that you touched on before, that society kind of places them, because they don't look like what someone who is disabled looks like. So I love the information you kind of provided, and I want to touch a little bit more on, because you've used a few terms. I want to touch on the idea of person centered language versus, I think maybe, identity centered language that comes for folks who experience disability. Can you share a little bit about that?

[13:21] LM: Oh, I would love to. And thanks for asking. I usually start any conversation by, as you would say, level setting or grounding us in this because, I don't want anyone to ever feel shocked at the language that I'm using. So I personally go between, person first and identity first language when I am describing my work, when I'm describing the population, when I'm describing disability. And I do that really as a way to respect the two prevailing preferences in the community. So, identity first language. So, I am a disabled person. I am a disabled physician. I'm a disabled student, is language that is chosen to say my disability is kind of a salient part of my identity. I cannot disentangle it from other things and oftentimes, it's also part of a disability pride identity that I am a person with a disability; I'm very proud of that. I bring to the table many different elements of my person and my experience that can be helpful to whatever the domain is, in this case medicine, which I firmly believe that people with disabilities have a lot to offer medicine. And then the other school of thought, which I think is what we're taught in society. If you take a course or, you know, are talking about disability, people are taught to use that person-first language. People are people first and then there are a number of identities that they bring with them, right? So this could be a person with a disability, a physician with a disability, a student with a disability. And I don't think one is better than the other, or right or wrong. I think. I know. I don't have to think it. I know that the most respectful thing that we can do, the most supportive thing we can do, is allow people to choose how they want to identify. And that cuts across, of course, multiple identities, right? And, as a society, we're getting there. We're doing better in this space. But to allow that person to decide how they're identified, what I say when people ask me is there a reason you can't call that person their name? Because I think that's really the most, the most effective way to communicate with someone or to have a conversation that involves, you know, speaking to that person, is to use their name and the pronouns that they use, but when I'm talking about the construct of disability, and when I'm talking about the research around disability, I do out of respect for both camps, I do go back and forth. And I do that in my writing as well. And I will say that many other research based, academic based journals and things of that nature will insist on person-first language. And I can't be upset about that because it's done in a very respectful way to protect people against discriminatory language, right? So the impetus of it, I think, is really good and well meaning. But I have fought back, you'll notice over the course of the last six years that I have been able to in some journals, I have been able to go back and forth. Now I've had to explain this right to the editors and we try to put a little identifier, a little explanation in our writings, and I actually learned that I want to give credit where credit's due actually learned that from Dr. Neera Jain, who does this so elegantly and many researchers do it. She may have learned it from someone else, but I learned it from her and I think, you know, we would all be well served to make sure that we're lifting up everyone in the way that they situate disability.

CS: Thank you for that explanation and realizing that there's not just one way to approach someone, but really trying to see that human first. And I think if we're at all questioning, just asking, how do you prefer to be? How do you prefer to be talked to? Or how do you prefer to be addressed? You know, what is your preferred salutation? And I think that's just so easy that we forget to do it. We make a lot of assumptions.

LM: We just submitted a paper and it was the first time we've actually put that into a protocol when working with students with disabilities. And it was something, I don't recall the exact way that we said it, but it was something similar to when working with a student on the wards to implement accommodations, you know, ask them when I'm speaking about your situation and the implementation of accommodations, if I have to refer to disability, do you have a preferred way that I refer, either a person with a disability or a disabled student, and that way I know I'm doing what you would want in that conversation, and modeling the language that you would want as well.

CS: So important and just speaks to just the inclusivity.

LM: Respectful.

CS: Yes

[18:54] LM: We should do this with everyone. And this also translates to asking people what they need. You know, we have so many behind the scenes, closed doors conversations. Well, what do you think they're going to need? Well, what do you think is happening? You know, what kind of accommodations are we going to have to provide? And the reality is just talk to the person. You introduced me as an expert. And I push back on that a lot. You know, Michigan wrote my bio and it says that in there and it's great for, you know, to have all these experts. We won't disparage Michigan. I get why it's being done, but I push back against that because I'm not an expert. I'm not situated in everyone's experience in what they encounter every day and the medical, you know, training environment. They are the experts. While I have knowledge that cuts across the disability category and disability training sites, and certainly have written the majority of things in this space, I can help inform the conversation, but I am not the expert. I'm just not, the person with the disability is, and more conversations need to be happening with that person, than with me. I'm happy to help. I'm happy to provide support if that person is centered in the conversation.

[20:16] CS: Fair point. Thank you for that clarification too. I love that. Can we talk a little bit about the prevalence, focusing on physicians with disabilities and you had an excellent article, of the many that you have published. Your 2021 JAMA network open paper, titled Estimated Prevalence of US Physicians with Disabilities. And you found that in a representative sample of 6,000 practicing physicians, 3.1 percent of those self identified as having a disability. And I thought it was interesting, the respondents were 63 percent male, 34 percent female, 20 percent transgender, queer or other, and predominantly white. Chronic health conditions were reported most commonly as those sources of disability, followed by mobility, psychological and others as next common. And I think there was a significant military component in that population as well. How does this compare to our non-physician kind of typical population in terms of prevalence? And what thoughts do you have from that paper about how that informs our thinking about physicians with disabilities?

LM: Yeah. Well, I would start, I would say, I never compare anything to kind of the norm or the typical because I think we really transcend that, right? There is no typical, there is no norm. It's how much we're willing to discuss or what elements of our lives we're willing to discuss. But it is always the reference, right? The non disabled I think is, non disabled peers, how we have kind of our reference group. And this paper, first of all, I always have to give props to the team. I partner with the AAMC workforce group on this data collection. And it is a team, an amazing team. Everyone at the AAMC has been an amazing partner and bringing, kind of, meaning to the data that they collect and that we work on together. But this paper is the first ever reporting of disability. And I'll speak to the specific points. The first one being, you know, what is this telling us, kind of, in the landscape of everything else when we look at the non disabled peers? And I want to take you back to a point I made earlier about disclosure. And that people are afraid of disclosing, right? That people don't, whether it's the way the question is framed, or whether it's their willingness to identify as disabled, because there are consequences if people find out, because we don't live in a society yet, and I'm hopeful that one day we will, but we don't live in a society yet where it's okay to be disabled and especially in medicine.

CS: Yes.

LM: So I think we have a few things happening. First of all, this is self reported data. So, I do think that people choose not to report their disability status. I think that the data that we have, that 3.1%, is likely under reported. We certainly found that as people age, there was more disability reported, right? And that is normative for all populations. In fact, when people say they're not disabled, there should be a qualifier at the end of that. Right. I'm not disabled yet. At a point, if you live long enough, there will be something that would qualify you as a person with a disability. And so because of those same issues, the societal beliefs about disability, the fear of stigma and bias, I do think this is an under representation. I think that people do have these fears about their career. The second thing that I want to point out that you touched on was what appears to be this almost exclusivity of white male respondents. And let's talk about that for a moment, right? We have all these concerns about stigma and bias, but who showed up in this study? Who felt safe enough to say, oh yeah, I'm disabled. It wasn't people of color. It wasn't women, right? Predominantly. I mean, we did have those individuals from those identities report, but I think we have to acknowledge that there's a lot of privilege in being able to say that you have a disability that we rarely talk about. And that privilege is situated as it often is in being white and male. And so if you're white and male and disabled in medicine, I do think that your experiences are likely very different than if you are black or brown or a woman, right? If you are those, all of those things together, oh my gosh, that's its own experience that may be very, very different from what other people experience. And you know, to the kind of sexual minorities, the LGBT group, the queer and trans group, you know, that group has been overrepresented in every single study that I have ever done. And I find it fascinating. I'm a huge ally and accomplice for these groups. I have convened a sub-committee on our team that is made up of people who are part of the LGBTQ population that are, that identify as queer, that identify as trans, to investigate why this is happening, and what types of barriers we're seeing for individuals that identify in this group, but we have a hypothesis, and that is that there's almost like a threshold for disclosure in this population and the disclosure of sexual identity is the threshold, right? So once you have decided to be out about this, you are no longer after, and I don't know, because this is what we're exploring now, but we hypothesize that, that it's such a strong and powerful feeling to be living in the authenticity of who you are, that you are no longer willing to be inauthentic in any space in your life.

CS: Wow.

LM: We might also hypothesize, however, that it is so unsafe to be LGBTQ, and so unsafe to be queer, and so unsafe to be trans, that if you are willing to disclose this, you have taken a level of risk, and you've decided that you're going to do that, and that disability is actually a parallel risk or maybe not as much of a risk. So you're willing to also disclose this, that the risk is the threshold, right? And you've taken that leap, not to say that you're entering a safe environment, but to say that you, you know, have already done a level of disclosure that puts you in a situation of potential peril. Does that make sense?

CS: It does. And I'm just sitting here processing everything you're saying because on a deep level, it makes sense that the risks that people take every day and that disclosure level, if they've already come out about something they feel is potentially even life threatening, right? And we think about folks who are in the LGBTQ community and disclosing that their physical safety, if they've already done that, then the next step of disclosing disability is not as risky. I am blown away by this.

LM: And I'm sitting here tearing up. I don't think there's ever been a time that I talk about this where it doesn't affect me. You know, I have a number of individuals who identify in this group in my immediate family. And I see on a daily basis what they go through and what exclusions to health care are happening now, and we need trans doctors, we need LGBTQ doctors, as much as we need representation from every marginalized group, you know, we are doing such a disservice to our patients. And so many of them are afraid there's just such a lack of trust with the healthcare system. So I love the people who are doing work in this space and I'm forever grateful. I will always write little, little love letters to the people doing the work in this space and in all spaces for those that are the most marginalized, because we, you know, we just, we need this and we need to protect one another. We need to create an allyship among all of these groups as well.

CS: Lisa, thank you for sharing your incredible insights on disability and medical education. We're going to wrap up this portion of our conversation and delve even more deeply in part two, which will be available soon.

[29:23] To our listeners, please check out this episode's show notes for additional resources on this topic. If you love this episode, tell us. You can find us @TheDEIShift on X, formerly known as Twitter and Instagram, or you can email us at TheDEIshift@gmail.com. Please email or tweet our team with your comments, feedback, and questions and we look forward to keeping the conversation going. Take care.