DocsWithDisabilities Podcast Ep 20: After the Conference: A Critical Conversation about Next Steps

On Saturday, June 20th, Dr. Poullos hosted the Stanford med school of medicine's first annual Conference on Disability in Healthcare and Medicine. The event was an enormous success and attended by over a thousand people in over five countries. Dr. Poullos and Meeks debriefed after the conference, and shared a common question. What's next? This is a big question to be sure, and one filled with possibilities for what inclusion in medicine could be.

Dr. Poullos and Meeks invited some colleagues and medical education leaders to the special edition of the podcast to discuss how we can work collectively to build on this momentum. 


Guests Include:

Chiquita Collins, the chief diversity officer and Vice Dean for Inclusion and Diversity at the Joe R. & Teresa Lozano Long School of Medicine

Iris Gibbs, Associate Dean of Admissions for Stanford Medicine

Michael Kim, Assistant Dean for Student Affairs

Zoie Sheets, a medical student from the University of Illinois, Chicago

Bonnie Sweenor, Associate professor, Wilmer Eye Institute, Johns Hopkins School of Medicine

Episode 20, Transcript 

DocsWithDisabilities Podcast #20

After the Conference: A Critical Conversation



Lisa Meeks, PhD,

Assistant Professor of Family Medicine

University of Michigan Medical School


Pete Poullos, MD,

Clinical Associate Professor of Radiology

Clinical Associate Professor of Medicine - Gastroenterology & Hepatology

Stanford Medical School



Iris C. Gibbs, MD, FACR, FASTRO
Associate Dean of MD Admissions
Professor of Radiation Oncology

Professor of Neurosurgery

Stanford Medicine


Michael H. Kim, MD
Med-Peds Hospitalist
Assistant Dean for Student Affairs

University of Minnesota Medical School


Zoie Sheets, MPH

Medical Student

University of Illinois, Chicago


Chiquita A. Collins, Ph.D.

Chief Diversity Officer

Vice Dean for Inclusion and Diversity

Associate Professor, Department of Population and Health Sciences

Joe R. & Teresa Lozano Long School of Medicine

UT Health San Antonio


Bonnielin Swenor, PhD, MPH

Associate Professor

The Wilmer Eye Institute | Johns Hopkins School of Medicine 

Department of Epidemiology | Johns Hopkins Bloomberg School of Public Health

Johns Hopkins University Center on Aging and Health

Johns Hopkins Disability Health Research Center


Lisa Meeks:

Hello to our audience. My name is Lisa Meeks and I am the host of the DocsWithDisabilities podcast. Today, I'm joined by my new cohost and friend, Dr. Pete Poullos, the founder and director of the Stanford Medicine Abilities Coalition, commonly referred to as SMAC. He's also a clinical associate professor of radiology at Stanford. And we are co-hosting this special edition of the DocsWithDisabilities podcast, called “After the Conference: A critical conversation about next steps.”

On Saturday, June 20th, Dr. Poullos hosted the Stanford school of medicine's first annual Conference on Disability in Healthcare and Medicine. The event was an enormous success and attended by over a thousand people in over five countries. What struck me about this conference was the community building happening on the sidelines, almost as an event within the main event.

I was full of gratitude for the space the participants and the speakers created, and really in awe of how far we have come in a little under a decade. Pete and I had the opportunity to debrief after the conference, and we shared a common question. What's next? This is a big question to be sure, and one filled with possibilities for what inclusion in medicine could be. And we've invited some of our colleagues and close friends to the special edition of the podcast to discuss how we can work collectively to build on this momentum.

Joining us today is Iris Gibbs, Associate Dean of Admissions for Stanford Medicine; Michael Kim, Assistant Dean for student affairs; Zoie Sheets, a medical student from the University of Illinois, Chicago; Chiquita Collins, the chief diversity officer and Vice Dean for Inclusion and Diversity at the Joe R. & Teresa Lozano Long School of Medicine; and finally, Bonnie Sweenor, associate professor, Wilmer Eye Institute, Johns Hopkins School of Medicine.

So first I'm going to start with Pete Poullos. What made you decide to host this conference?

Pete Poullos:

Yeah. Good question. Well, the short answer is that it wasn't my idea. It was actually the idea of the Medical Students with Disability and Chronic Illness group, MSDCI. They, unbeknownst to me, had applied for a grant, a small grant, which they were awarded. And they were planning this conference and they had asked me for some input. I did agree to help them quite a bit. And so, you know, it became like a shared effort. But the students, like in so many things, really led the way.

Their idea originally was to have sort of a dual purpose conference, almost like two conferences in one. One part of the conference focused on helping students and residents with disabilities navigate the landscape. And the second part educating students and other providers on how to take better care of patients with disabilities.

So we were going to have hands-on workshops in the afternoon where students would rotate from station to station practicing a simulation of taking care of a patient with a disability. But it was going to be, I think mostly a Bay area conference. So the conference taking the shape it did changed it completely. And I think it changed it for the benefit of everyone. I mean, to have over 1200 people register for this conference, I mean, hats off to you I think. We were collecting registrants, but then when you started marketing the event for real, it just exploded. And so to have this reach of like 1200 people from all over the United States and from five or six other countries in the world was just mind blowing.

To have this constant um feedback and chat going on was also crazy. I mean, I ran some stats on this and we had 446 active users of the Slido chat function. There were over 570 questions hosted. 2,327 likes to the questions. We had uh 2,441 poll votes. So just an amazing interaction. It really did add a whole other dimension to the conference and did create this sense of community.

Lisa Meeks:

It was beautiful. I know you were watching, I was managing like text messaging and being a moderator and being a speaker and being a cheerleader for my colleagues and I was just blown away watching it. It literally exploded in a good way.

Pete Poullos:

Yeah, no, I really, it was funny because the day for me was so intense. But to like distill all the questions and comments down into some like meaningful things to ask the speakers was one thing. We were all text messaging on this thread together. And I was actually really trying to listen to the talks themselves because I was going to be asking them questions at the end and I needed to know what they were going to talk about. But man, it was by the end of the day, complete exhaustion, and actually exhaustion for like a week.

Lisa Meeks:

But exhaustion in a good way. You were happy-exhausted.

Pete Poullos:

Yeah, in a good way. Like in a giddy way. You and I talked for how long after the conference?

Lisa Meeks:

A couple of hours.

Pete Poullos:

A couple of hours. Right. I was just sort of soaking in the joy.

Lisa Meeks:

I think too we were just so proud of our colleagues. I was just so in awe of Nat and Chris and Holly-- I had never seen speak-- I was blown away, blown away. And Nicole did such a good job. It was just amazing. It was just amazing.

Pete Poullos:

Yeah, I mean, just too, we work together, but we also work alone. And so to bring the whole community together like that was very emotional. And I'm sort of emotional about this community to begin with because I really feel like these are my people. Like I found my tribe kind of a thing. And so to be able to share in that joy with everyone was so meaningful.

Lisa Meeks:

Well, good things happen um it has really sparked just a wider conversation, and with that I’m going to move on to our first guest, Dr. Gibbs and we are going to talk about admissions. So Dr. Gibbs, I was actually moderating the conversation and I saw you posting  in those little side conversations I was talking about . I  was thrilled to see you talking about actionable change! “We have to do this, we have to change this.” As Associate Dean of Admissions for one of the top schools in the country, and lead author of a forthcoming Call to Action for Accessible Admissions, I want to get your take on what  you think we can move forward the agenda of disability inclusion? 

Iris Gibbs:

Yes. Thank you so much, Lisa I had so much fun learning during that conference. And that's what you saw me doing. I was like “this is so good” and so all of the information that was being provided. I think it tells us is that no matter where we feel like we are we are were always, learning. And as long as we keep our eyes and hearts open for the range of students who are out there, that we can think of new and interesting ways to be able to make sure we expand that umbrella to the medical profession, so thats the lens from which I view life, so it was, it was very exciting. And I think there were such actionable items that were brought up through the conference and through some of the work we've been doing together, including that call to action in this space of admissions. I'd be happy to talk about that more, but the conference was just absolutely amazing. And I know Pete put his heart and soul into this, as well as the students on the committee and the other staff on the committee. So they should be highly commended.

Lisa Meeks:

Thank you. And I agree a hundred percent. When I caught you kind of posting, and I felt your enthusiasm I thought two things right away.

One, you were posting on adding language that encourages disclosure. And I have to say, I don't know if you're aware, but there are parts of your technical standards language that have been copied by some of our other schools. You have some things in your language that is really compelling to say to students with disabilities. One of the lines says something like we understand that having a disability does not suggest that you are not capable of fulfilling our program. In fact, we're aware of several physicians with disabilities that have gone on to have a remarkable careers, something to that nature. And yet I saw you were marking on the actionable language changes, and I thought, Oh my gosh, if Stanford gets even more inviting, you may be the most progressive school in the country. That's wonderful. So that was one of my thoughts.

And the second thought was when people see someone in your position working towards this change, I think that it removes an element of fear that if you can say, one of the top medical schools in the country is doing this, it's almost, you know, setting a new standard to say to other schools, absolutely, you can do this. We can all do this. Do you have any thoughts on how you might change your current language?

Iris Gibbs:

Yes, absolutely. I think, um, that’s why it’s so important to keep our eyes and hearts open. Um, while I believe that, you know, I’ll take that combination, um, that Stanford has, um, some pretty good, uh, technical standards, I think even we feel the need to keep, um, you know, keep an eye on that to make sure that with technological challenges, that if there are things that we need to, um, amend from time to time to improve inclusivity, then that we need to do that. And that's something that we're thinking about doing, but, um, but really one of the things that I was thinking about was like, we literally don't have posted on our page that encourages people to actually apply. And when Pete said that, I said, you know, we can do that, right, because it's not just a matter of using the legal ease language to say, technically speaking, you can apply, but right. That's where many of the websites I think sort of look, um, but it's a difference when you say, you're welcome to apply and we encourage you to apply. And that one was something I felt like was definitely doable and our staff, you know, probably it's already on there.

The way that I think about this, as the way I think about all of, of admissions. And, um, you were talking earlier about COVID and how COVID changed the way we did this conference and some things about COVID was that sort of, you know, that silver lining in it that we learned how to use Zoom better. We expanded our audiences across the world through this particular setting, but there are a lot of other things COVID that came that brought some potential barriers.

And so I do believe that, um, we sort of became one of the first schools, like recently to just post that we were not gonna, um, you know, be adherent to this whole barrier of the MCAT, right. For example, and folks like, Oh, you guys are super progressive, but you know, if people can not equitably get access and accommodations just to even test for the exam then we really want to have that playing field equalized for everyone. So we actually just announced that, uh, just the other day that we were not really requiring the MCAT  for the application to this season. Um, and so this is the way the lenses through which I think about things is sort of equity, um, and making sure people have a good level playing field for being able to showcase their talents.

Lisa Meeks:

I had heard rumblings, Dr. Gibbs, that that might happen and I am in awe of you at this moment. I, you know, I want to personally thank you. I'm sure our listeners will be applauding. I would like to break out in applause, but the reality of the situation is that our students don't have equitable access to these high-stakes exams right now. During this pandemic, it has certainly highlighted the inequities in a much bigger way. The students with disabilities are especially burdened by the restrictions on these high-stakes exams. So I applaud your decision. That's definitely a progressive view, and I am just very, very grateful to you for, for watching out for our communities and making sure that our students can present their best selves without this kind inequitable review of their MCAT. So thank you so much.

The other thing I want to reflect on that you said was that you said, you know, it's, yes, we have all of this language in our technical standards, but there's nothing on the admissions page to, it sounds like you're saying, recruit students with disabilities. That saying, we want you to apply and you are so right. And interestingly enough, I don't think I've ever really thought about it that way, that, you know, it's not enough to send a message that we welcome you once you apply. We want to encourage you to apply. And that again, I just think speaks to this progressive stance that you're taking in admissions and want to thank you for that.

So, your colleague, that will be the... kind of on the receiving end of the students with disabilities, if they are able to apply and be accepted and matriculate, is Dr. Kim, so he is our next guest, and I want to move our conversation into the actual medical education space.

So Mike, I saw you on  the conference and you were actually in my chat  group when we were all kind of went into our individual Zoom groups. I was so happy to see your smiling face and excited to see you attending the conference. But I have to say, I wasn't surprised. You have been such an incredible ally for students with disabilities. And I know I get the pleasure of working with you on occasion and, and you're just a joy to work with. My question to you is…

 I'm wondering if you can just speak to your experience for being an attendee at the conference and how the event impacted you. I'm wondering what you will take away from this event that perhaps you didn't already know.

Mike Kim:

Thank you dr. Meeks. And thank you for allowing me to share my experience at the conference. I was amazed by the number of, and diversity of people who participated in a relatively short notice taking a Saturday out of already chaotic lives. It was great to share with a broad interdisciplinary group that all seemed to have a very similar mission and similar reason to be at the conference. The talks were wonderful, and I learned so much about what I don't know, and the reflections on how to make things more welcoming for future learners and physicians with disabilities were priceless. My favorite part of the conference, however, was the small group case discussion where we can each bring our own experiences to the situation presented. I was fortunate enough to be in your small group when you facilitated with people from across the country who have different roles and different perspectives on the cases. As  people were sharing the thoughts I found myself saying on over and over again, that's a great way to think about it. I think my big takeaway was that with the proper environment, enough willpower, and perhaps a little creativity, we can work through nearly any situation that we might be presented with overall, it was very empowering.

Lisa Meeks:

Our group alone, I think there was such a diversity of representation. We had PTs, OTs, a physiatrist, disability specialists. We had I think a family physician. So there was just an enormous amount of diversity, just in our one breakout group. So I was super excited about that as well. I think you say you learned stuff. I was learning stuff, and I have the pleasure of working with Chris Moreland, yet, I felt like that day, I was seeing my colleague in a different way, that I was growing and learning. Just listening to him talk about cultural humility. It was, it was fantastic.

So, following this event, What do you think the biggest part is going to be for MedEd? What are our next steps, if you will, for increasing inclusion and how can we do better?

Mike Kim:

Well, you're seeing increasing numbers of medical students identify with a disability and requesting accommodations. I take it to mean both that we're doing a better job in recruitment, but also that the undergraduate environment is allowing students to be more successful enough now to apply to medical school, we need to learn from these undergraduate programs from each other. And of course from our students to best provide a culture of equity and inclusion and to maximize their academic success. Some thing we’re  trying at the university of Minnesota include creating policies and procedures, addressing accommodations and duty hours to essentially take decisions about granting an accommodation or an excused absence out of the hands of individual course directors and faculty.

We were wrecking. We recognize that many students are first diagnosed with a disability during medical school, or may come in unsure how to discuss their disability. So we're continuing the conversation about accommodations through the admission process, through orientation and through each year of medical school. Although we very much rely on our disability liaison, Barb Blacklock at, uh, at our disability resource center is amazing, we are now delivering even greater support to a new academic advisor program.

Each student now has an assigned full time advisor that provides academic planning and consultation and can help students reach out to resources such as our disability liaison. And we're trying to provide more narratives, role models, mentors to show students with disabilities that they can and will become great doctors. Data would be helpful as well. So we have engaged 12 medical schools to collect data about the performance and trajectory of their students with disabilities and compare them to controls. Our expectation is that students with disabilities are able to be as successful as their counterparts in medical school.

Lisa Meeks:

Thank you so much, Dr. Kim, that was, those are great ideas. And I love your idea about collecting data, learning from our undergraduate partners, for sure. The idea of an advisor who it sounds like, kind of serves as a first filter, if you will, to make sure that students who are experiencing any kind of potential challenges, whether they're disability related or not, will quickly get filtered into a resource to make sure that they're connected with it sooner. We know that in the high stakes environment of medical education, it is imperative that our learners quickly get connected to the resources that we have available.

So I'm going to shift. I'm going to go from medical school advisor to medical student. So as a direct follow up from our student affairs Dean, Zoie, you’re a current medical student right now. I know you just finished your first year. Congratulations. And one of the reasons that we asked you to join us in and talk about, you know, how the event positively impacted you was because I actually saw one of your tweets following the event, and I was really moved. And I'll let you share that with our audience, but could you talk about what the conference meant to you?

Zoie Sheets:

Sure! Thanks, Dr. Meeks. At one point during the conference, I live-tweeted that I was in tears, and honestly, I didn't expect for that to be where I wound up during the conference. But, I was simultaneously studying and listening and Dr. Moreland signed something that stopped me in my tracks and brought me to tears. He expressed that medicine should not just be patient-centered, but that it should be patient-PARTNERED care. I quickly remembered the first, and only time, I have had a disabled doctor and how heard I felt, how cared for I was.

You know, the field of medicine and disability is a field that you sometimes don't know matters until you have to know how much it matters-- and through my personal experiences, I know it matters. I know disabled doctors have a unique ability to serve patients, to partner with patients, both with disabilities and without. Seeing Dr. Moreland sign his experiences during this conference hit me with the realization that I was attending a conference with over 1,000 people, who intimately understood, or were working to understand, the intricate intersections of disability and medicine. This honestly gave me a lot of hope for where this field is headed, and made me even more excited to one day be a disabled doctor myself.

Lisa Meeks:

I love that Zoe. If you don't mind me putting you on the spot, I have a question for you. As a student, I know that you've advocated for improved access both at your school, and I believe as part of, you know, a national group. And so I'm wondering, you know, you have the opportunity now to advocate to our entire audience.

What is the number one thing that schools can do in your opinion, and from the perspective of a learner, that would improve access for medical students with disabilities in general?

Zoie Sheets:

Yeah, this is a hard question to answer, partially because it feels so important and also because disability is so nuanced. There are so many types of disabilities, and disability can impact anyone and can intersect with any other social identities. Even if two people have the same disability, their needs can vary a lot.

So, I think the most important thing is to listen, to engage each individual, and use these moments to learn about broader changes that need to happen. I want to give some more context on that though, on why that’s important. There is a really key difference between the disability rights and disability justice movement. The disability justice movement was created because a law-based approach to accessibility does not go far enough to create truly welcoming spaces for those with disabilities, particularly with those who have disabilities and have another marginalized identity. In academia, we have to apply the foundational ideas of this movement by moving beyond just compliance and reasonable accommodations so that disabled students have genuinely equal access. We have to use some of the tools that disabled activists have been using for years -- creativity, flexibility, and immense dedication to trying new things, until a solution is found.

Engaging each individual -- literally inviting students to one-on-one meetings --  and asking them what challenges they are facing, and expressing commitment to helping them find solutions, can create a much more accessible space for medical students with disabilities. And, it can give us ideas for what to change in our policies and practices to create access for folks who will join our schools or join our field in the future.

Lisa Meeks:

I love it. I could not have said it better myself. And I really appreciate your focus on the individual. I think so many times, and it doesn't matter what the population that's being marginalized is, people view this population as one, one population of sameness, and it isn't. Every individual is so unique and brings, like you said, this intersectionality and these lived experiences to the table.

And I love the idea that we can learn from the students as much as we can assist the student and make the space more accessible. I do think we have so much to learn, and as always the person with the disability is the expert in how their disability impacts them in the space. Thank you so much, Zoie.

So I'm going to move even bigger. We had this conference and we started at the beginning with admissions and then went into medical education and spoke to a learner. Now I want to take a 20,000 foot backstep and I want to talk about policy and diversity, equity and inclusion, and how disability is part of that. And I want to talk about research and how we move forward. So I'm going to bring in Dr. Collins and Dr. Swenor, and you are both such incredible leaders and mentors for women and diversity in medicine. And you are both epidemiologists. So a big shout out to the epi world.

Although you share this background and passion, you do have very different roles in medical education that impact the disability movement from two distinct angles. And Dr. Collins, I want to thank you personally, from the disability community. I've had the pleasure of watching you truly, you know, live your commitment to disability as part of diversity. You have diversity grand rounds series at your institution, and you've included multiple speakers on disability. I think you truly embrace this as an important part of the diversity effort. You also help elevate this message by sharing posts on social media. I know leading up to the conference, you were really just really amplifying the conference and the message, and you were such a great ally of the cause. And you helped build our audience.

But it's really important to point out that not only did you share the information, and I think that's easy, right? It's easy to go on social media and amplify a message, but you took the time on a Saturday to attend the conference, and we're giving shout outs during the conference and engaged in the conference. And so my question to you is:

As a national leader in diversity, and in fact, your chair elect for the AAMC GDI steering committee, you are in a unique position to amplify disability as an important form of diversity. What do you do? And what advice would you give other schools that are seeking to improve disability representation?

Chiquita Collins:

Thank you for that. And I am a learner like many others who joined in on that fantastic conference that took place a couple of weeks ago. And so I think it's important as it pertains to individuals who are in similar roles as we articulate policy, procedure and practice, but also be true to the commitment. You know you may have heard the old adage, you know, and you can't be what you can't see. Right? And we have to ensure that we create a viable climate for our learners that represents the diversity that exists in our world today. And when we talk about, sometimes we throw everything in the pot as it pertains to diversity, but I would argue that you can't have diversity without inclusion and equity, right? And so it's important for us to be adamant and do our due diligence in ensuring that everyone who comes to our academic health centers feel valued and respected, and they offer a uniqueness.

You know, our differences should be seen. And in light of what we contribute is unique. No one wants to go to a party in which we all look alike. Okay. I mean, I don't personally, and I'm assuming most don't as well. And so, you know, you've heard another adage that I like to use, you know, being, being invited to the party, but also being asked to dance, right? Diversity is more than just numerical diversity. We have to invest in meaningful ways to make sure that people thrive and are successful to eradicate barriers. When I hear the term disability, sometimes it's perceived in a negative light as if someone who can't do or some limitation or can't be. You know, the reality is that we have to make sure we provide accommodations for them to be successful, not excluded. They're part of this unique, I would say, dynamic in terms of grooming the next generations of physicians and scientists.

And so the time is ripe and I am just honored because you have led this Dr. Meeks in the report that came out a couple of years ago, that was a partnership with the AAMC. And so with that, it gave me, you know I would say information as we articulate our own policies in terms of adhering to accreditation. So diversity is more encompassing than, you know, the I would say the traditional way in which we kind of view only from the perspective of race, ethnicity, and/or gender, we have to make sure in terms of looking at under-representation, that we are inclusive in the way in which we define it. And to ensure that opportunity exists in being part of our learning environments.

Lisa Meeks:

Thank you so much. I really appreciate it. And I appreciate your commitment. And I know that, you know, you're in a unique position to keep this topic at the table and make sure that as we look at the landscape of diversity, that we're consistently expanding our definition and making sure that disability is, as you said at the table.

So I'm going to switch to Dr. Swenor. And Dr. Swenor, you're a researcher and the director of the newly formed Johns Hopkins Disability Health Research Center. So congratulations to you on that amazing achievement. I know that your work has traditionally been in the area of visual disabilities. You are a person with a visual disability, but lately you're broadening this to disability inclusion and the pathway from education through employment. For example, in a recent paper, you showed declines in the number of people with disabilities and research careers, which is a little bit frightening if we're trying to build up, this amazing group of researchers and work towards equity.

We've heard from multiple leaders today and learners throughout the medical education continuum, but you might argue, and I think you will, that we're missing an important element that's going to help move us forward and shape change. Can you elaborate on that?

Bonnie Swenor:

Yes. Thank you so much, Dr. Meeks. You're correct. Over time, my work has evolved and changed focus and from focusing just on visual disabilities, as you indicated, to conducting research that generates evidence and develops strategies to really address disability and equities more broadly and across settings. And research is really no exception, the research setting.

So far, our discussion today and the discussion around the Stanford conference has included disability in medicine, but we really need to consider that in partnership with disability inclusion in research settings, because those settings really do go hand in hand. So while there's certainly much more work that needs to be done in medical education and in healthcare settings, efforts to include researchers with disabilities is lagging even behind those efforts. Currently disability is infrequently tracked in research settings or included in research workforce diversity efforts. And so, as a result, we have very little data about the disability inclusion in those arenas, in those settings.

So, as you, Dr. Meeks wisely always remind me, we treasure what we measure. And so without that data about disability inclusion in research, that gap will go on under addressed. It will continue to be ignored. So right now, the data that's most often cited about disability inclusion in research is from the National Science Foundation, which releases this report every two years. It's called the Women, Minorities and Persons with Disabilities in Science and Engineering. It's really one of the only sources of information about disability inclusion in scientific settings. And that 2019 report indicated that about 20% of undergraduate students reported disability. So that's any undergraduate student, but only 7% of doctoral recipients in science and engineering have a disability. So a clear gap in that career pathway. But as you and I both know, as hopefully most people listening will know, that's just one end of the spectrum of inclusion, even though that really highlights the gap.

The other end as Dr. Collins and others have discussed is we need faculty. We need the mentors with disabilities, and that's true in research settings. So Dr. Meeks and I started a path to try and collect data or to investigate disability inclusion in research at that end of the spectrum. What we found was that principal investigators or the individuals leading the research who reported a disability declined from 1.9% in 2008 to 1.2% in 2018. I mean, those estimates alone are abysmal, and the fact that they're declining over time is worse.

And so what this data really highlights is there is a true gap. There's a lack of inclusion of people with disabilities, researchers with disabilities and these settings. And while this data certainly doesn't tell us what those barriers are, it does tell us that they remain unaddressed. And they could include issues in the research environment to structural barriers that make research careers difficult, but we need to start to focus on them.

I also just want to stress that to me, this work is more than just about working to include more researchers with disabilities. As a person with a disability myself, as a researcher with a disability, I started on this path sort of as a survival mechanism for my own career, but it quickly evolved into a broader understanding that as was just discussed, this is underscored by a real pursuit of social justice. So as we approach the 30th anniversary of the Americans with Disabilities Act, I am consistently almost every day struck by that fact. I truly do believe that we need more researchers with disabilities to start to close the gap of social justice. We need person-centered approaches to closing the gaps for disability inclusion. We can only do that by including people with that perspective in these spaces.

And I just want to make one final point that, you know, on this, in this very difficult time during COVID-19 and the attention towards racial injustice in our society, I want to also just echo what I thought Dr. Collins just very beautifully discussed, which is a need that we have to understand that the differences between people are important, they're critical, right? They shouldn't just be ignored. And I do hope that as we move forward, we can do a better job at highlighting those differences. And I just want to thank Lisa and Pete for continuing this conversation, as I think that is a critical step.

Lisa Meeks:

Thank you so much, Bonnie. And I really appreciate your perspective. I know we agree on this. I think that, you know, if you're not measuring specific populations or you're not collecting data, you might not even understand that there's an issue that is specific to this group. So data is just critical and you hit the nail on the head. I do say all the time, well, we measure what we treasure and I believe that. I believe that if you truly think disability is important and you are committed to increasing the number of individuals with disability, that you not only shore up your recruitment efforts and your retention efforts, but that you measure this as a metric to see how well you're doing and to see, you know, what that retention looks like and identify potential barriers. So, I appreciate it so much.

I am going to take us back to the man who brought us all here and who did just such an amazing job. And that is Pete Poullos. And Pete, I am going to ask you a big question. You know, we, I remember in our debrief, it was just like, what's next, what's next? And I think we were just overwhelmed and enthusiastic and had a million ideas. And we've kind of said, you know, to these leaders at our virtual round table, what do we need to do? What are the next steps? But I'm going to ask you, because you did something that I don't think any of us thought to do or could have done, putting together this plan B conference and expanding it and being so highly successful. What do you want to see happen next?

Pete Poullos:

That is an excellent question. I think that one of the things that I would like to see next is for us to join together nationally and bring together healthcare providers with disabilities and start an advocacy organization and start a community. I would like to see, down the road, attitudes change when it comes to people with disabilities. I think one thing that people haven't mentioned in this conversation yet is the treatment of the person with disability once they arrive to where they are. So it's not just getting them accepted. It's not even just including them in everything and making them feel included, but eliminating some of the microaggressions and bias that the students experience over the course of their years when they're studying. And I think that that's going to require a real attitudinal switch on the part of society. We're talking way down the road there.

But I think the intermediate goal is just to increase representation of healthcare providers with disabilities and to, I would say more closely approximate the rates of disabilities and a similar cohort of of people who are in the working age population, so that when patients go to the doctor, they have a real chance of seeing someone with a disability that these doctors and other… I keep saying doctors but I really do want to broaden the conversation to include nurses and social workers, OTs, and PTs, and all sorts of providers with disabilities. PAs. But we do really need to include the voices of all these other healthcare providers and all of those need to be included in the conversation about how to better shape healthcare, policy, and procedure to benefit our patients.

I was struggling at the end of the conference just to synthesize everything that I had learned throughout the day and all of the emotions that I was feeling. And just thinking about like, how, if I could, if I could summarize the conference in one slide, if I had one takeaway message to give, what would it be? And it actually, once I posed that question to myself, it came rather naturally. And that's what I said. We are not the problem. We are the solution. There was a lot of emotion in that one slide. We belong and I wanted to, I guess, I also wanted to close with a message of hope and and let people know, because I'd seen so many comments on the, on the message board and emotions to the effect of like, you know, do I belong here? Can I do this? And so I wanted people to come away with the message that they could, and that there are people out there who are willing to help them.

Lisa Meeks:

Well, my friend, I am in awe of you. You did an amazing job bringing people together. I hope that in some way, shape or form, we have a repeat of the event. I know that people would be very excited to attend and to learn. I learned so much from my colleagues and I appreciate everyone who's on this podcast. And I know that several of you are doing work, whether it's research or activism or policy development, that you're all leading in this area. And I am so grateful for you and the work that you do and for your time today, and for being so thoughtful in your responses. So I thank you so much. 

For the audience, thank you so much for joining us. And if you were not able to attend the conference, it is videotaped and fully captioned, and we'll provide that information in the transcript of this podcast. So keep listening, keep learning, and we appreciate you so much.

Kate Panzer:

Once again, thank you to our guests for their valuable perspectives and insight. And thank you, our audience, for listening to this critical conversation after the Stanford Conference on Disability in Healthcare and Medicine. Our thoughts are with everyone during this difficult and challenging time. Stay safe, stay well, and take care of yourselves and one another.

This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. The opinions expressed in this podcast do not necessarily reflect those of the University of Michigan Medical School. It is released under a creative commons, attribution noncommercial, nonderivative license. This podcast was produced by Lisa Meeks and Kate Panzer.


*This podcast was created using excerpts from the actual interview and is representative of the entire conversation. Interviewees are given the transcript prior to airing. Some edits may reflect grammatical and syntax adjustments for transcription purposes only.