Episode 36: Dr. Lisa Iezzoni

Guest

Dr. Iezzoni has spent more than three decades conducting health services research focusing on two primary areas:  risk adjustment methods for predicting cost and clinical outcomes of care; and health care experiences and outcomes of persons with disabilities.   After spending 16 years as Co-Director of Research in the Division of General Medicine and Primary Care at Boston’s Beth Israel Deaconess Medical Center, Dr. Iezzoni joined the then Institute for Health Policy as Associate Director in 2006 and served as director of the newly named Health Policy Research Center from 2009-2018.

Dr. Iezzoni has led numerous research grants with funding from the Agency for Healthcare Research and Quality, National Institutes of Health, the Health Care Financing Administration (now Centers for Medicare & Medicaid Services), The Robert Wood Johnson Foundation, The Gordon and Betty Moore Foundation, and other private foundations.  An internationally recognized expert in risk adjustment, she has edited Risk Adjustment for Measuring Health Care Outcomes, now in its fourth edition. Dr. Iezzoni began her disability research with a 1996 Investigator Award in Health Policy Research from RWJF, and the book summarizing this work, When Walking Fails: Mobility Impairments of Adults with Chronic Conditions, appeared in 2003.  Another book considering disability experiences more broadly, More Than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities (coauthored with Bonnie L. O’Day), was published in 2006.  Dr. Iezzoni has also published numerous original articles, editorials, and commentaries in major medical and health services research journals.

Dr. Iezzoni speaks widely, and she has served on numerous committees and advisory boards of professional and governmental organizations, including the National Institutes of Health, the Institute of Medicine, the National Quality Forum, The Robert Wood Johnson Foundation Clinical Scholars Program, and the Massachusetts Executive Office of Health and Human Services.  For the U.S. Department of Health and Human Services, she served on the National Committee on Vital and Health Statistics (1994-2001) and Secretary’s Advisory Committee on Health Promotion and Disease Prevention Objectives for 2020 (2008-2009).  She has served on the editorial boards of the Annals of Internal Medicine, the Journal of General Internal Medicine, Health Affairs, Medical Care, Health Services Research, and the Disability and Health Journal, among others.  In 2000, Dr. Iezzoni was elected to the National Academy of Medicine in the National Academy of Sciences. Dr. Iezzoni also has a forthcoming book, entitled Making Their Days Happen: Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities, to be published in Fall of 2021. 

 

Audio transcript

Lisa Meeks: (narration)

Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks, and I am thrilled to bring you the DocsWithDisabilities podcast.

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession. 

Sofia Schlozman: (Narration)

Hello, and welcome back to the Docs with Disabilities podcast. Our guest today is Dr. Lisa Iezzoni, a professor at Harvard Medical School and a leading researcher on the topic of health disparities among people with disabilities. In this episode, Dr. Iezzoni and Dr. Meeks discuss medical education’s hidden curriculum, strategies to improve care for individuals with disabilities, and Dr. Iezzoni’s advice for medical education faculty members and learners with disabilities. We begin with a discussion of one of Dr. Lezzoni’s recent publications: a Health Affairs paper titled “Physicians’ Perceptions Of People With Disability And Their Health Care”. (https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2020.01452?journalCode=hlthaff)

Dr. Lisa Meeks:

Welcome to the show, Lisa. I am blessed beyond all measure to call you a colleague and a mentor and a friend. I get to call you Lisa, but our audience knows you as Dr. Iezzoni, Professor of Medicine at Harvard Medical School, and world-renowned health services researcher primarily focused on healthcare experiences and outcomes of persons with disabilities. It is such a pleasure to have you with us and to be able to chat with you in this particular domain. Your work has had such a big influence on me professionally and personally, challenging the way I think about the delivery of healthcare for people with disabilities. And of course, your work also deeply informs our team's research and policy work that's aimed at increasing the number of students with disabilities into the pathway of healthcare, education, and onto practice.

I know you were recently on Included, the podcast with Bonnie and Nick, and we love that podcast, shout out to Included, and hope everyone gets a chance to check that out, especially Dr. Iezzoni's interview, which was amazing, and really focused a lot on that Health Affairs paper that came out that caused a big ripple, I think, in our world. could you share a little bit about that?

Dr. Lisa Iezzoni:

Thank you so much, Lisa, for having me. I'm just so pleased to be on this podcast.. our Health Affairs paper came out in February of 2021. And I really view that there were three kind of top line findings from that. The first one is that 82% of a national sample of physicians feel that the quality of life of people with significant disability is worse than the quality of life for other people. Only 41% of physicians feel strongly confident that they can provide the same quality of care to their patients with disability as they provide to other patients. And only 56% of physicians strongly welcome people with disability into their practices. 

Dr. Lisa Meeks:

That's a sad state of affairs. And to some regard, I think it explained some of the disparities that we see and the differences in health outcomes for this population. And one of the things that we're doing, the kind of docs with disabilities researchers, are looking at whether and how the infusion of individuals with disabilities, with that lived experience of disability, into the healthcare profession-- as physicians, as nurses, as PTs, OTs--would help inform medicine in a way that changes some of the practices and changes stereotypes and belief systems, and informs the procurement of accessible medical equipment, the development and design of hospital systems or clinic systems to be inclusive of people with disabilities.

And so we have a long way to go to be able to connect the infusion of these individuals to massive changes in outcomes, but I think that we've made a good start. one of the things that we were talking about prior to starting this interview, was actually the things that might disrupt that and that might have a negative impact on the belief systems of people and how they situate their experiences coming in, and their enthusiasm for the work And  what they might actually be up against in that pathway from education to practice. Do you want to talk about that?

Dr. Lisa Iezzoni:

Sure. I mean, I think that that 82% of doctors who report that the quality of life of people with disability is worse than for people without disability is part of a hidden curriculum. And we know that trainees in healthcare settings still operate in an apprentice-type system, where especially once they get in their clerkships and they're seeking evaluations, they're also seeking the goodwill of the mentors that they have. They're seeking good evaluations that mean that they have to behave like their mentors do.

And so therefore, I'm worried that this is going to be a barrier to young physicians truly retaining the openness that they may have had when they start out in the training, where they are very welcoming and open to differences. If what they see during the training process is a set of mentors who are very close and still are very kind of paternalistic and ableist in their own attitudes about people with disability,  those kind of attitudes are going to shape the way that the young doctors move forward in their training.

Dr. Lisa Meeks

Yeah, for the education part, we have some evidence that people can have really positive views of individuals with disabilities. And then after that clinical year, after third year, those attitudes change dramatically.

Dr. Lisa Iezzoni:

Exactly.

Dr. Lisa Meeks:

And for no other reason than watching social modeling of how we treat people with disabilities in the clinical setting, what our belief system is around disability, and patients asking for disability paperwork, patients coming in with disabling conditions, especially those that don't have a clear origin. I think there's lots of opportunity for bias and stigma in that setting even before they get into practice. And then when they get into practice, I would imagine that there are some time constraints and other regulatory sorts of things that keep people from realizing that kind of advocacy that they had wanted to do for so long.

I'm certain that this is specific to specialty as well. Some specialties would have more bandwidth or more focus holistically on the patient. But can you talk about that at all??

Dr. Lisa Iezzoni:

Yeah. Well, I remember quite a few years ago now, I did some focus groups with final year medical students to ask them how they would want to be taught about disability. And once you've done a lot of focus groups, you kind of learn for your face to not reveal any emotion. You kind of have a blank expression on your face and you say, "Oh, that's very interesting. Could you tell me more?" And the students were talking about what it was like for them during their surgical rotations transferring patients who were going to have surgery for obesity. And basically, what they saw in the room once that patient had been anesthetized and was no longer aware of what was going on, was that the language in the room really shifted. And that the people who were transferring the patient onto exam tables or onto the operative table, were talking about the patient, were talking about them in the most stigmatized possible way.

And so there are certain subgroups of disability, I think, especially disability related to obesity, where... the students didn't seem to realize that the language that they were using was so stigmatized, it was very shocking to me that they did not hear themselves and did not hear the words that were coming out of their mouths because they were the kind of words that they heard from the surgeons and the operative team in the room. And so that's kind of an extreme example, but I think that one of the things that I have heard, especially young doctors once they begin to start being in the clinic and they now have patients that they're in charge of, is the patient who comes in asking for the Workers' Compensation form, or the Social Security form, the Medical Evaluation, and the young doctor says to me, "Well, I look at this patient and I think they can really keep on working. How am I supposed to fill out this form?" And so, the young doctor now feeling that they're in charge of kind of protecting the public purse against a person with a disability who might be wanting what that young doctor now feels is maybe a social benefit, like income support, that they shouldn't be getting.

And so, I think that the frame begins to shift from being focused just on that patient who's sitting in front of them as they become a young physician to thinking about, "Okay, am I supposed to also be thinking about other things? Like, should people be getting benefits like Social Security Disability that might affect the public policy and the total amount of money that our country is now paying on disability?" And so, those are concerns that I have. And one of the concerns that I have is that sometimes there are some medical school programs now, Lisa, and I'm sure that you could probably name some of them, that have students go into the home. And so spend some time with a family, with a child with a disability, or spend some time with a person with a disability. And they get to see how that person has organized their daily life and has figured out how to live and has figured out how to do this and do that. But once you become the practicing physician, unless you specifically have a home-based practice, you don't really do that. And so, you begin to make all the ableist assumptions that other people do, "Ah, well, is that person really safe at home? Should that person really be allowed to go home? Should that person even with a significant disabilities be able to live alone at home, even though that person might have 10, 12, 15 hours of personal assistance services?"

So although young students start with a very open mind about wanting to respect the dignity of risk of people with disability, that to be able to succeed within the training system, with those 82% of their mentors who have a more ableist view and a more negative view of disability, that their mind suddenly change. And that is of concern to me.

Dr. Lisa Meeks:

Do you think that telemedicine and certainly the forced acceleration of telemedicine and telemedicine training and pandemic conditions, do you think that that has the potential to change these assumptions by seeing people actually in their home, and being able to connect people to say, "Show me how you do this," or, "Explain to me how you do that"?

Dr. Lisa Iezzoni:

It's a really great question. And I think that it probably would, except for the day that I happened to fall while I was on a Zoom call. And so you can also see bad things happen, but certainly, I think that could be the case, but I think that it's a very limited view that you get, because you don't get the full view of how somebody has gotten to the space that they are.  so you don't necessarily know.

And I think that there is an advantage to seeing people moving around a clinic space, to see how they move in space, how they might transfer or not transfer, the kind of supports that they need. And I think especially for people with mental health conditions, that's one place where I've heard people talk about... And some people are very content with having virtual telehealth type of mental health visits, but others are not. So I think just like everything else in medicine is going to be a very personal decision about whether this works for you.

Dr. Lisa Meeks:

Yeah, obviously, it removes a lot of barriers to coming into the clinic for those with physical disabilities or chronic health disabilities, but I could also see it being used in a hybrid model to assess a patient for certain things when they're with you in the clinic, and then to be able to observe them outside of the clinic or get some insight into their home or their family or their caregiver structure and get kind of secondary data about the patient from that interactions. I could see it being used in that more hybrid model.

Dr. Lisa Iezzoni:

Yes, I totally agree. And I think that it could have significant advantages if it's used in that way, especially since there are people who've figured out how to take their camera on a tour of their house. I'm not one of them quite yet, but if people can figure out how to do that I agree with you on that point. Yeah.

Sofia Schlozman: (Narration)

In the next section, Dr. Meeks and Dr. Iezzoni discuss efforts to confront this hidden curriculum and take purposeful action to reduce the ableist attitudes that can be conferred during medical training. Listen or read along as they address strategies to confront discriminatory behaviors as a student, researcher, or leader in a healthcare field. 

Dr. Lisa Meeks

So what do we do? What is the intervention to try and reduce this hidden curriculum? And I agree with you 100% that there's follow the things that I say, but we follow the things that people do, right? We try to emulate our preceptors and our attendings. How do we stop that? How do we disrupt kind of that non-verbal communication? What is the solution? Is it an assessment addressing? Do we standardize assessment to the point where it doesn't really matter if there's a hidden curriculum that the learner has to understand disability in context regardless and be respectful of it through these modules? What do we do?

Dr. Lisa Iezzoni:

I think it's a challenge. And it's a challenge because there is, as I've said along, an evaluation system where that attending physician is the all-powerful and puts the narratives together that become part of the dean's letter that goes to the residency training program that is used to evaluate whether that student should be considered for a residency or then later fellowship or whatever position that they want to take on.

And I think it is going to require awareness and it's going to require, I think, a lot of support and direct statements about something. listen to yourself. Listen to what you're now saying, reflect on that. It's going to take a lot of active listening in a safe way, though, so the students don't feel criticized so they understand that what you're trying to do there is maybe unpack the layers of learning that have happened, that they're not aware necessarily has happened to them. Because again, it's hidden in the way that it's not overt, that it's really a covert thing. That they're at the bedside while an attending physician is just yelling at a patient who's hard of hearing, rather than thinking about using some sort of device that could help with communication, that could help kind of augment the sound through a microphone type of system. And so they're emulating physicians who they want to aspire to be like. And I think it's going to take maybe in the final period of training, some thoughtful sessions that really try to unpack this.

Dr. Lisa Meeks 

Yeah. A few things you said, one about the attending yelling at the patient, and I was thinking, or just not talking to the patient.

Dr. Lisa Iezzoni:

Yes. That's true. feeling like why bother?

Dr. Lisa Meeks

Right. Talking to a family member, or just not engaging the patient at all, which is what I've observed happening. The other thing that I thought was interesting was when you talked about going through this in layers with the learner as to not make them feel bad, but to help them understand. And I was actually thinking the reverse of how do learners unlayer this and unpack this with their preceptors or attendings? Because I find that there's lots of opportunity to mentor up and mentor out. So one of the things that we've been working on and our team is this idea of allyship and what allyship looks like, and taking the load off of the learners and the physicians with disabilities to have to constantly explain things. 

to disperse it through the entire cohort, such that every member of the cohort is responsible for creating a respectful and informed environment, and doing that in a way of calling people in, rather than calling them out on the wards or in private wherever, but to educate folks about the way that their language or terminology or interactions with the patient may be perceived. And I think we saw this happen, I'm going to say it was a few years ago, where a group of students got together and wrote a letter to the preceptor to let them know about an exchange that had bothered them and to take that burden again off of the student where the exchange was happening, but to say, and I love the way they framed it, "As a community, we don't want to treat people with disabilities this way, whether they are our classmates, or patients, or what have you."

And then they brought it out to that bigger kind of reflection on how this also then translates to patients. This was a particular interaction with a student with a disability that had a chronic health and kind of questioning the student in front of everyone, but they called in the faculty, talked about the specific incident, but then applied it to everyday care for patients. And it was a learning moment for everyone. And thankfully, it went really well. I think this could go differently depending on what environment you're in, but I thought that was a really nice way to approach this particular incident.

And I find that the students today don't seem to be as fearful. I think there's still a lot of fear. And again, this is all contextual, right? So if you're at school A, you may feel very comfortable disclosing. If you're at school B, you may have every right to fear disclosing disability. But for those that find themselves in culture A, there seems to be this almost disability pride now that is associated with disclosure. And it's been a new experience for me, of course, I've been doing this work for only one decade or two, but it is a change for me to see that. And I wonder what the impact of that will be and whether that is sustainable if we can build these communities that respect disability?

Dr. Lisa Iezzoni:

I will confess to you that having gone to medical school from 1980 through 1984, I feel kind of like Dorothy in The Wizard of Oz.  My medical school was all in greyscale, and then all of a sudden now post-ADA we're now in technicolor, and everything looks possible. And so I like to hear what you're saying, and I certainly have interacted with students who just made me grin from ear to ear, because it's just so amazing how they are out there, they're willing to talk about it, they're excited to talk about it. And then I run up against the same ableist kind of attitudes that I've confronted now for four decades, and I'm a professor.

And if I am feeling it, maybe it's because I'm so pre-ADA, Lisa, and so I'm so sensitized to assuming that I will be impeded in everything I do, and I don't have the same sense of agency that a lot of the young medical students have these days, because they just are going to do it, but there's still a lot of barriers out there. And I think it's going to take time for the department chairs and the division chiefs, and everybody who's kind of in leadership positions who might speak well about this but you know their hearts are just not in it. When they put together a slide deck that talks about disability in a certain way, or they start laughing about people with a certain type of disability in a private kind of meeting that you're at, it just comes out. And so you still see it out there.

And so my concern is that we've got a great pipeline, we've got young people with disability who are coming through medical training, and maybe we might have people like the physician who the students approached in your story that you've just described, who were willing to be open and think about their own behavior, but I still think there's a lot of ableist attitudes out there that are going to take years to wash out.

Dr. Lisa Meeks: 

Yeah, I agree, except on one point. I don't know that it will take years to wash out, because I'm not sure that some of the attitudes will ever be washed out. So I do think there's this reserve of people who will never be on board with what we're discussing, they will never agree, they'll never see it. They will choose the one or two examples of where it didn't work, and they will hold on to those examples as kind of the guiding force. I'm so proud of our work, I'm so proud of everybody in our lab and all of the amazing researchers and administrators we have. Our lab is anchored by four deans of students that are researchers, administrators.

So talk about research to practice, that's a short, little jaunt, right? If you're the administrator who's actually doing it. And so many amazing students who've done this work and who are out there advocating and making change in the world. you know how I am, I am so optimistic that it's annoying at times, thinking that we can do anything, and then I'm always just surprised when someone isn't on the same page with me.

Dr. Lisa Iezzoni:

I feel like Eeyore in Winnie-the-Pooh. Here I am kind of like this depressed donkey out there.

Dr. Lisa Meeks:

I have moments, and I will share with you that had my first actual ableist, discriminatory, I could not believe a person would put their name to what they were saying, review. And I couldn't even respond to that. And I thought about you, I know you've had the same situation, and I thought about what to do, kind of about what would Lisa Iezzoni do? 

Dr. Lisa Iezzoni:

I'll tell you what I did in a recent instance, when I was writing about a paper where we had done research with people with significant physical disability and people who self-identify, this was the language that they use, just having serious mental illness. And one of the reviewers said, "How could people with serious mental illness possibly participate in a research project? How could they possibly have any attitudes? How could they possibly respond to a survey?" And I'm old enough that I just wrote to the editors and I said, "This is unacceptable for you to have reviewers who have these kind of attitudes."

And the editors were amazing. They kind of sit back and they said, "You're right. We shouldn't have sent a review like this to you, we should have reviewed it ourselves and recognize that this was wrong. That a peer reviewer would express these kind of attitudes that basically marginalized not only the population, but your entire research study. And so number one, would you write a commentary about this? And number two, we will also write a commentary about this." I want to pat on the back to the editors of the journal Medical Care, that they were willing to do that. But I think it's done too rarely.

Dr. Lisa Meeks

knew what you had done with that journal article. So in your footsteps, I took a deep breath. With my Winnie-the-Pooh attitude, I went to the editor and just declined to submit a revision, and said, "I can't possibly respond to this, and these are bias opinions. This person clearly has not done their work." And they did handle it behind the scenes is what I was told, and we did move forward with that paper. It hasn't come out yet, so I'll refrain from saying the name. But I was lucky enough to be on that paper with somebody that I have immense high regard for, that is a person with a disability. And I was able to have this really incredible conversation with my co-author about how to handle it, but we shouldn't have had to handle it.

Dr. Lisa Iezzoni:

And it goes in different directions as well, Lisa. I was recently on an NIH study section and reviewing a grant, where the applicant had said in the first paragraph at the applicants' Biosketch that they were a person with significant mental health problems and that they understood the lived experience of having a disability. And I had serious concerns about the methodology of the grant, but one of the other reviewers said, "Oh, I think it's so important for people with disability to become researchers. I'm just going to give them a pass on their methods. And I'm going to give them a really good review." Whereas, I gave them a lot of feedback about their methods, hoping that that would be helpful to them in submitting a revision, but it's important to treat people like people.

Dr. Lisa Meeks

Exactly.

I find that in medical school too, that some people out of fear or misplaced kind of parental, wanting to protect the student, will allow for a reduction in the competencies, or a pass that maybe would not have been a pass for a clinical experience. And eventually, those things catch up with you, right?

Dr. Lisa Iezzoni:

They do. 

Dr. Lisa Meeks: 

This poor learner will hit third year, and instead of being appropriately remediated or held accountable to the competencies, or to have gone through somewhat of an iterative process to review whether accommodations were appropriate and whether they were removing the barriers, these kind of looking the other way or passes, put the actual learner in a more precarious situation down the line when they have not had the opportunity to remediate, their accommodations have not been adjusted. And now, they're in a step by, and they're going to fail, or something of that nature.

And so I try really hard to educate people, because I find that when people are on the extremes, they're either, "No one in my course can be a person with a disability, it's not possible for them to do this," or, "Oh, it's a person with a disability, I'm just going to bless their hearts, they have done so much work, they're trying so hard." And that mentality is destructive on both ends. And that's why we really push for a thoughtful, informed process in the beginning upon matriculation that removes that bias that is as objective as possible.

Dr. Lisa Iezzoni:

I agree completely. Yes. It's really difficult, especially when the person making the paternalistic judgment and following that path really wants to do good and really has a good heart, but they are not thinking clearly about what's in the best interest of the student, or the researcher, or whatever the context is.

Dr. Lisa Meeks

Absolutely. So there's been a lot of change. I would say, starting in 2016, I started to see the actual fruits of the labors of so many people that had been doing this work in academic medicine far before I arrived on the scene. Just kind of the greats, the pillars, including yourself. And I've had such conflicting feelings about, and I've written about this I believe in one paper, about the arguments that we were making 25, 30 years ago are the same arguments we're making now. And why are we having to make the same arguments, right?

So I get invited to do a lot of commentaries, where they're asking me to speak on something, and I literally want to say, "That's already been written about. Here are the authors, here are the papers. I don't want to regurgitate something, especially when it was someone else's idea or work, I'd rather elevate those voices." But then I do think we have seen change, especially across the associations and some of the accrediting bodies I know the ACGME has put forward two mandates for disability inclusion. They're a little vague, but it's a start.

And I do think that people are kind of rallying behind this cause, but is it trickling down in the way that it needs to? And that is a little different story.

Dr. Lisa Iezzoni:

That's my 82% of the doctors.

Dr. Lisa Meeks:

Yeah.

Dr. Lisa Iezzoni:

Lisa, to be honest, I mean, that's why I keep going back to that, because 82% is a lot.

Dr. Lisa Meeks

A lot.

Dr. Lisa Iezzoni:

As I said in my conversation with Bonnie, which was so much fun, is that, that really suggests there's no response bias here, these physicians who said that quality of life of people with disability is worse than for other people suggest they truly believe that, that that is a response that nobody would question. And so I think that that's why we're still hitting roadblocks is that we still see physicians and people in other healthcare professions who are in leadership, still not fully understanding their own biases and their own stigmatized views.

Dr. Lisa Meeks

listened to that podcast and I was taking a walkAnd I remember thinking in that moment  some of the things that they were willing to say were a little shocking. I'm grateful that we at least know what we're up against. Right?

Dr. Lisa Iezzoni:

Yes.

Dr. Lisa Meeks:

We know that there's just no awareness of it.

Dr. Lisa Iezzoni:

Well, and the point that so many people have made to me, at least about my paper is, they've kind of been a little dismissive of it, which is okay in the following sense, and that is that they say, "Oh, we already knew this." And it's true. I've probably interviewed at least 300 people over my research career, and these are all people with disability and they've all said the same thing, that they feel that their physicians make erroneous assumptions about their lives and their perceptions of their lives. The only thing that our paper did here was put a number to that.

Dr. Lisa Meeks:

Yeah.

Dr. Lisa Iezzoni:

And putting a number to it sometimes make something noticed more than if we just tell the story.

Dr. Lisa Meeks

You are a professor from Harvard, you know that little school on the East Coast, and if you walk into a physician's office and are treated a certain way, all the privilege that you bring with you isn't helping. I know it doesn't help me when I walk in a physician's office, and I'm not Lisa Iezzoni, but it's still not helpful. And so if I'm experiencing the sorts of attitudes that I have, I can't imagine what someone that's not in medicine, that doesn't have really robust healthcare or resources, what they're experiencing.

Dr. Lisa Iezzoni:

Yeah, I just wanted to dissuade you of any impression that I actually am able to get different healthcare. I remember after telling my then primary care physician that a first-degree female relative had just been diagnosed with breast cancer at a young age, that that physician did a breast exam with me sitting in my wheelchair without getting me out supine on an exam table, because her office was inaccessible.

Dr. Lisa Meeks:

It's so scary.

Dr. Lisa Iezzoni:

It is.

Dr. Lisa Meeks:

It's so scary.

Dr. Lisa Iezzoni:

I just like went, okay, that's all that's going to happen here right now.

Dr. Lisa Meeks:

Yeah.

Dr. Lisa Iezzoni:

Yeah.

Sofia Schlozman: 

In this final section, Dr. Iezzoni shares her advice for faculty members, learners, and allies who want to make medicine and more accessible and inclusive field. Listen or read along as she discusses the importance of respecting the diversity of disability experiences, prioritizing collaborative care, and ensuring that the burden to educate about disability and ableism does not fall solely on disabled students. 

Dr. Lisa Meeks:

So in all of my interviews, one of the things that I ask people to do is to provide guidance or advice for the learner in the pathway, because the learner in training is really who's listening to this, and some medical school administrators and faculty, 

That is the majority of our audience. And I wonder, I know that you always frame it as your experience was pretty pre-ADA, but working with some of the students now that are in medical education, and you work with faculty that are in medical education. I'm wondering if you have any advice that you could give to the faculty that is in line with all of the work that you're doing? Like, what can they do to change the system? Our allies and our friends that are out there saying, "I want to help, I want to make this better, I want to make healthcare more accessible. What do I do in my class, in block one of year one, what can I do?"

Dr. Lisa Iezzoni:

Well, you used the word accessible there, and so I'm going to go there for a second. And I think in any training area where they teach physical exam to students, or where they have standardized patients for students, they have to have height adjustable exam tables. so that's just a very quick and easy thing for them to think about is that they need to replace at least one table, if they're all fixed height with a height adjustable exam table. But I think, Lisa, the notion of collaborative care where it's really a sharing between the patient and the doctor, with the patient with a disability is the expert in their own lives and often the expert in their own health conditions, that for physicians training young medical students and nursing students and students in other healthcare professions to model listening and hearing, and respecting that the person in front of them who has a disability might know more than they do about their health condition, is really important.

Because that is often true that the person with a disability knows more, maybe not about the exact mechanism of the drug or some other kind of very technical piece of information, but about their lives and often more about what the expectation should be with a certain type of treatment that a physician might recommend to them. So I think just modeling listening and being open to hearing what that patient is saying.

but I've often heard people talk about the paradox of disability, that there's this paradox that people with disability like me, who's used to wheelchair for 33 years, might actually value the quality of my life. Why should we view that as a paradox? Who's describing that as a paradox? That's juxtaposing my life with some normative life. And so the life that I lead is the life of a paradox. And so, I think that we need to examine all the words that we use around this topic for ableist implications. And that can really get down to the weeds a lot, and it can be kind of annoying to other people at times, but I think that it's really important to be open and listen to other people.

And we're hearing that so much now about other qualities that people bring to their interactions, around sexual orientation, gender identity, certainly race and ethnicity is the number one topic, but also I think disability, the lived experience of disability needs to be respected.

Dr. Lisa Meeks:

I absolutely agree and echo that, and the language is so important. And I think I'll go a step further and say, not just the language that we use in the clinical setting, but the language of our textbooks, and the language in our manuscripts, and the use of terminology, and the way we just talk about patients with disabilities. It's very different if you were to read an article about a patient with a disability, or a population with a disability in a medical manuscript, and then you were to read one of my papers, it would seem as if you're not talking about the same topic. It's so interesting to me.

Dr. Lisa Iezzoni:

Yes.

Dr. LIsa Meeks:

Any thoughts for the learners that are out there?

Dr. Lisa Iezzoni:

Well, I think that if you are a learner with a disability, that I worry about learners feeling that they have to take too much on their own shoulders. And you talked about this a while back, Lisa, about a group, a community of learners, getting together to approach a physician who used some language that they felt was uncomfortable. I worry about an individual learner feeling that they have to take the weight of the world on their own shoulders.

I also want to underscore something that we all know, and that is that disabilities are so diverse, As an individual, I've used a wheelchair for 33 years, but I do not know what it's like to be somebody with a traumatic brain injury, or somebody who's deaf or hard of hearing, or somebody who's blind or has low vision. And so I cannot possibly be expected to represent what the lived experience is of all disability. And I make mistakes myself oftentimes by not understanding how to talk about a certain type of disability or how people experience a certain type of disability. I'm constantly making mistakes myself.

And so I think all of us also being open to saying, look, I don't know everything. I know a lot about myself, I know a lot about what my experiences are. And in certain contexts, I'm willing to teach you about it, but you shouldn't necessarily expect me to help cure you of your ableist attitudes. I can help try to highlight some for you, or maybe try to call out instances that are especially egregious. But I think that putting too much burden on students, when they're trying to learn, they've got so much burden on them with all the science and everything that they're needing to learn nowadays in 2021 in medicine, I think we have to be careful about our expectations of students as well.

Dr. LIsa Meeks:

I agree. And the process under the law says specifically should not be burdensome. And I think not only is it burdensome on an individual level, but that schools look to that student, right? The student with a disability, to represent all disability and to help them understand what to do. And while I appreciate that they want to know more and do better, that's not the role of that student. And I've seen that happen across many schools, where students have then been tasked with doing that.

Well, I think that's excellent advice, and I know the listeners will just appreciate the time that you've taken Lisa, I know I'm just so indebted to you for your mentorship and your openness and just helping create this space, and for the work that you did far before I arrived on the scene. even if we're Pooh Bear and Eeyore, we can still imagine together a future where disability is widely respected, and that medicine and medical education anticipate having colleagues and learners among them that represent a myriad of disability categories and other identities. 

Dr. Lisa Iezzoni:

Yeah. I want to thank you, Lisa, for just being a pioneer in this area and teaching me a lot. I've just learned so much from listening to you and watching you. And so, thank you.

Dr. LIsa Meeks:

Well, you are quite welcome. 

Sofia Schlozman: (narration)

To Dr. Iezzoni: Thank you so much for joining us for this episode. We are so honored to have you on the show and to hear your valuable insights and perspectives, and so thankful for all of the work that you have done and continue to do to help make medicine a more welcoming space for individuals with disabilities.

To our audience, thank you so much for joining us. We hope you enjoyed this episode, and we hope to see you next time.