This conversation explores the intersection of disability advocacy and medical education, highlighting the importance of collaboration between medical students and The Hive's disability advocacy community. Dr. Nora Newcomb discusses her journey in advocating for disability inclusion in healthcare, the development of educational resources, and the significance of feedback from advocates. The dialogue emphasizes the need for a patient-centered approach in medicine, the challenges faced in research, and the hope for a more inclusive future in healthcare. Special Thanks: members of the research team that are/were USF-affiliated: Abigail Weisse Shannon McCarthy Aishwarya Vuppala Franklin Sun Kyle Lien Rebekah Johnson Dr. Marjorie Fitzsimmons Dr. Andrew Galligan Dawn Schocken Dr. Jennifer Caputo-Seidler Shirley Smith Dr. Vinita Kiluk We would also like to thank NICHE Med for their funding and support And a huge shoutout to The Hive advocates: Chatequa Pinkston Tiffany Pervis Carrie Hoeh Natalia Rijos Tres Whitlock Chapters 00:00 Advocacy in Medicine: Becoming the Change 02:46 Collaboration for Disability Inclusion 05:47 Revitalizing Medical Education 08:45 Empowering Future Physicians 11:42 The Role of Personal Experience in Advocacy 14:15 Feedback and Iteration in Medical Training 17:12 Understanding Patient Needs 20:05 The Adept Care Protocol Explained 23:00 Shifting Perspectives in Patient Care 26:03 Paternalism vs. Patient-Centered Care 28:51 Research Gaps in Disability Studies 31:52 The Importance of Community in Medicine 34:34 Building Confidence in Medical Practice 37:31 Creating Lasting Change in Medical Education 40:25 Personal Journey of Advocacy 43:24 The Future of Disability Inclusion in Medicine 46:27 Final Thoughts and Hope for Change   Transcript: Speaker 1 (00:00) I think there's a desire to want to wait to find an advocate in your institution to kind of glom onto to work with. If you're not finding that person, that means you are that person. Speaker 2 (00:13) love that. Hi, community and welcome to talking inclusivity with the hive. ⁓ If you don't know the hive is a nonprofit Tampa based nonprofit that is building ⁓ the first truly affordable and inclusive housing for adults with disabilities. A part of the mission of our community is amplifying the voices of advocates ⁓ that have disabilities as well as. organizations in our community that are being amazing allies and ⁓ moving the missions of the disability community forward. And so today I am meeting with Dr. Nora Newcomb. Hi, Nora. Thank you for joining us. And the reason we're so excited and we wanted to invite Dr. Newcomb on is because ⁓ in December of last year, USF Medicine, ⁓ reached out to us and asked the Hive to do a collaboration with ⁓ their medical students, the Hive advocates. And so we wanted to share about what that collaboration was about. ⁓ again, just ⁓ really be excited and share what USF Medicine is doing and ⁓ what they're doing for the disability community. So we're just gonna jump into our conversation. first, and I literally didn't... I going to do this, but I'm sure you assumed. Could you introduce us to you? Speaker 1 (01:46) Absolutely. So hi, everybody. I'm Nora Newcomb. I have my MD and I am currently a resident. So I am a doctor in training. ⁓ Other than that, to give a brief visual description, I am a white woman with long brown hair, wearing more makeup than I normally do, with black and white glasses, a red shirt and a flower necklace. I got involved in disability advocacy about five years ago. ⁓ and have been involved at the national level with Medical Students with Disability and Chronic Illness National, which is a student-driven organization. It's now a 501c3, dedicated to inclusion of disabled learners in medicine, but also the advancement and inclusion of ⁓ disabled people in medical spaces and improving education for high quality medical care for people with disabilities. Speaker 2 (02:45) So. Speaker 1 (02:46) So, yeah, I'll say, and we got to know each other through the work that we did while I was still at usf as a medical student, which just a little brief disclaimer. I'm speaking for myself. I don't speak for us. I don't speak for any other organizations. I just speak for me. ⁓ But we got to know each other for us. When I was working there as with a project through niche med. So, niche med is a grant that we were lucky enough to receive. through a DMD and it's a national initiative through the American Academy of developmental medicine and dentistry to support the development of disability inclusive curriculum specifically curriculum that is inclusive of ⁓ people and topics related to intellectual and developmental disability in medical school curriculum. And then there's also a dental version because it's known. that that is an area that is majorly lacking. So we met because we'd received funding through Niche to work on our curriculum and we reached out to you because we're working on videos. So I'm so happy that you've had me, you're having me here and I can't wait to talk more about our project. Speaker 2 (04:03) Yeah, I am just so proud of USF for recognizing the need ⁓ to create spaces and to create ⁓ assessment processes for doctors to better the experience of individuals with disabilities. ⁓ My son, he's 31, but ⁓ we have lots of stories. ⁓ from moments in, you know, at doctor's appointments or hospitalizations and things like that where ⁓ if there would have been more ⁓ education and awareness, ⁓ those moments wouldn't have been so traumatizing. so, and also we did have many of our HIVE advocates come and speak at round tables with some of the medical students and they got to share. those experiences, which I loved. And I just loved how empathetic and really leaned in the medical students were in listening to every story and wanting to, you know, just really express that they want to make a difference in that space. So, and I remember one of the advocates leaving and she told me, she said, I have so much hope now in, in healthcare. And it was just from, from those panel discussions and those round tables. So, ⁓ That's it's a big deal. So I kind of feel like you kind of already spoke a little bit to this, but ⁓ what personal or professional goals do you hope that the disability inclusive medical assessment videos will achieve in the broader medical community? Speaker 1 (05:47) So to take us a little step back, these videos are part of a larger effort that we're attempting to do to basically revitalize our disability curriculum. So USF historically, our med school had a robust disability curriculum that was spearheaded by Dr. Lori Woodard, who's a fabulous advocate and has been for her entire career. ⁓ However, when she retired, a lot of it went away, which is just the nature of things when the nature of how it is, is a lot of medical institutions where when you have a something that is considered a specialty topic, which I'm using air quotes now because disability is not a specialty topic, but when it is something that is championed, when that champion leaves, things tend to fall apart. And so our hope is not to create from the ground up. but to build on what we already have and to bring it up to where it was and hopefully a little more. So this is being done by a team of faculty and students. And we're basically trying to be as helpful as people will let us and get our curricular initiatives in where people will let us. So it's an ongoing collaborative effort. Part of that are the videos that we're talking about. So we're in the process of creating with our niche funding a series of videos that will show basic medical cases, basic medical interaction between a physician and a patient with a disability ⁓ in an attempt to highlight. both how normal that interaction should be and how standard and how much it is like every other interaction we're taught to have and ways in which we need to be careful and considerate on top of that in the same way we learn about patients from any walk of life. A large part of modern medical education is done through simulation. ⁓ model patient exposure, is somebody with a lived experience presenting as themselves with lived experience for a medical student to talk to and videos like this. It's very common to have medical students watch a video and then pair it with something, whether it's an exercise, a model patient case, an opportunity to reflect. And we're going to get to what that will be. We're still working on where this will fit exactly in the curriculum. But our hope is that these videos will seek to both normalize and educate ⁓ these types of encounters and experiences for our medical students. Because realistically disabled people are 25 % of the US population, if not more. And also it's a lot of who comes into healthcare and we don't do a great job in general in medicine of teaching. how to take care of disabled patients. Our goal is that these will be shown to medical students at a time where they can take their skills and take it with them into the clinic. And it may be that they're shown them multiple times. It may be that it's paired with panels like ones you're talking about or other initiatives, because there's this idea of ⁓ repetition in medical education. It's a very important tool of spaced plant repetition. And so the idea is to hit people with the same topic over and over and over and over again in little bit different form with the hope that it'll stick. Speaker 2 (09:20) So good. So you kind of mentioned this, but I want to talk about it more about your generation because I think that that's something that's significant. But ⁓ medical education has historically had gaps in disability inclusion. ⁓ How do you feel your generation of medical students is uniquely positioned to address these gaps? And what have you personally learned so far ⁓ that you wish you would have known earlier in your training? Speaker 1 (09:50) ⁓ I think our generation is uniquely primed for many reasons. I think the reason that many of us would point to is the COVID-19 pandemic and the attention that that drew to people with disabilities, their interactions with healthcare, conversations around healthcare rationing, ⁓ comments and controversy by the then director of the CDC about the lives of disabled people. ⁓ I think that there's there's there's been a reckoning in healthcare. So those that are those of us that came in. Like, during or after the covid 19 pandemic have entered a field of medicine that is. Markedly different to the one before that is perhaps more aware. But I think to put everything on the covid 19 pandemic. Ignores the work of disabled activists. That came before us. I think a lot about the late Andre Skyegos, who was the past chairman of the National Council on Disability, who made it a large part of his mission to improve disability access and healthcare, the access of disabled people in healthcare and disability education. I think of the works of the work of other ⁓ organizations that have championed this cause. end of disabled people themselves being their own advocates in healthcare. Speaker 2 (11:13) Yeah, that's so good. And and so true. You know, I, see so many people just with our organization with a hive. I'm constantly like, looking for individual creators to follow because I'm constantly learning, you know, just from following their platforms. ⁓ But I definitely see where social media has ⁓ given, you know, given individuals a voice that they that they didn't have and also empowering them in ways. ⁓ Because all of a sudden, you you see someone who put something out there that maybe they didn't think it was going to be a big deal. But then, you know, they get this huge response and following like, wow, that this was amazing. And so, ⁓ no, that's so interesting and so good. ⁓ Speaker 1 (11:59) Let me see. Speaker 2 (12:01) Did you answer the question about what do you feel like, what you would have learned earlier in your training? Speaker 1 (12:08) No, I did not. Let me do that. Okay, so something I wish I knew earlier in my training is just how much power you have as a med student to be the person on the team that makes somebody feel seen and heard and understood. So as a med student, you have the gift of time. You typically have fewer patients, you typically have fewer tasks. And so you really have the ability when you have patients to take time and to really get into the nitty gritty of things to ask questions that don't normally get asked. And if there's something that needs to be done to make sure accessibility is is met. ⁓ If you need to go get a communication board for your patient, if you need to. ⁓ Honestly, anything, if there's something that needs to happen, you have the time to do it. You just need to communicate with your team. And so I think when I first started third year, like many of us, I was scared. was intimidated. We all are being in the hospital, being in clinics, seeing patients being, being forward-facing is always intimidating. Right. But I think I wish I knew earlier how much of a difference it could make. Even if it's just that you go and sit at the bedside for an hour in the afternoon and make somebody feel human. Even if it's not a patient with a disability, it's just anybody. That's something I wish I knew sooner. that I am happy I know now. Speaker 2 (13:43) Thank So the timeline that you gave us, ⁓ the USF gave us as far as the drafts and things like that, ⁓ emphasize getting rough scripts to reviewers, so our advocates very early for their feedback. ⁓ Can you share an example of how this early ⁓ interactive feedback process has already significantly shaped the script? ⁓ and the learning objectives and why that feedback is so important. Speaker 1 (14:16) A recurring trend you're going to see in all the work that we do is a very strong emphasis on the disability rights slogan. Nothing about us without us. Everything that we do is done in partnership with our advocates, your advocates, the advocates that attach to this project. And everything we do requires iterative rounds of feedback because at the end of the day, It's twofold. One, we don't want to get to the end, realize that something was wrong from the beginning, and then have to go back and redo it all. I think it erodes trust. think it creates a lot of extra work. But two, I think it creates buy-in. When you get people involved early, it helps us on the scriptwriting side of it feel like we're getting people's voices, feel like we're getting community input right away. We're making sure we're not we're not making an error, but it also makes people feel like they're being part of the process, which they are, and that there's an understanding of where we're going, what we're doing. A lot of people are very apprehensive about healthcare. And I know asking people to be in these videos was a big ask and requires a lot of trust. And so having that process helps build trust, helps with buy-in and helps make sure that we get. correct advice and make sure everybody's comfortable with what we're doing. I know that we have had a lot of instances when we were creating the scripts of people giving us really good feedback. You gave us great feedback. ⁓ And it was all, it was all taken into account. And then even day of we would go over the plans with people and we got some great ideas even day of. So how it worked is we went to our simulation center. So like I said, a lot of medical education works through simulation. And we had, it's basically like a mock-up clinic room. And so we would meet with our model patient and whoever might happen to be accompanying them, who would be on video. And we'd say, all right, you have the script, you know, kind what we're talking about. We've printed it out just so you can have it here. But also like, when we talk through this in person, what might this look like for you? Is there anything in particular when we talk about accessibility that you want seen? Like. Our scripts were very outlining. Word for word scripts. Because we're not, there's a distinction in medical education between standardized patients and model patients. Like we've already said, a model patient is somebody who comes in and is themselves. A standardized patient is somebody who comes in and plays a character with the idea that every medical student who sees that person has a standardized patient experience. Speaker 2 (16:45) They were. Speaker 1 (17:09) We're working with model patients here. We're working with advocates. And so. We didn't want it to feel too scripted and therefore too potentially stilted because not everybody's an actor, but also it allowed for more natural flow. And so we had a lot of room on the day of as much prep as we did to make sure that if something came up, we could accommodate for it. And I think that was a winning strategy. I know that something that we talked about ⁓ was waiting room accessibility, which was not even on our radar. ⁓ well, we know that waiting room accessibility is a thing, but it wasn't on our radar as something that we were going to include in the script or include in the experience. And you brought it up as something that was a big part of your experience and we put it in. And so I think there was a lot of opportunity throughout the entire process. Like was, it's iterative up until the videos are done ⁓ to make sure that there's good involvement buy-in. Speaker 2 (18:09) Yeah, I love that. also really liked that, you know, cause Tres and I were one of your guys's model patients. ⁓ Of course I was the caregiver, Tres was the patient, ⁓ my son. And I really liked too that you guys stressed in the conversation that ⁓ you wanted, you were wanting to make it clear to the medical students that one person with cerebral palsy ⁓ is totally different and unique within all of, in all of ⁓ their needs to another person with cerebral palsy. there's, you know, like approaching every person, every disability, no matter if it's the same disability that you've heard of over and over, but you know, very uniquely geared to that patient. Like I really, I love that you guys included that and spoke about it. ⁓ Speaker 1 (18:58) So disability is not a monolith. It should not be seen as such. Speaker 2 (19:02) Yeah, so good. So ⁓ the protocol that you guys utilized ⁓ to do the videos and the assessments is called the Adept Care, so spelled A-D-E-P-T ⁓ hyphen care protocol. And it seemed to be pretty central to your guys' videos. ⁓ Can you share like one or two aspects of ⁓ what the Adept Care model was and ⁓ how it translated into the scenarios and videos. Speaker 1 (19:35) Absolutely. So the Adept Care Tool is a standardized teaching instrument that can be implemented to help basically anyone. It's geared towards learners, but basically anyone in healthcare better understand how to approach a patient encounter for a patient with a disability. So it's been used everywhere from first year medical students to practicing health professionals. ⁓ And it was first developed by medical students at the University of Connecticut. So Sandra Carpenter and Lauren Benedetto and then was expanded and revised as part of a team. ⁓ With myself and other other learners. Including Lydia Smeltz who published the 1st paper on it. So if you're looking for it, it's it's smeltz at all. ⁓ And it's. I feel like if you look at it, it, very proud of the Adept Care Protocol. There's. There's a lot of conversation in medical education about mnemonics. They're a very good teaching tool in a lot of ways. I think the more and more you get involved in medical education, the more and more you see how much there's a shift towards simulation, but also teaching people how to be good communicators. That wasn't historically a big central focus in medical education and. we now realize that it probably should be. And so part of what we do is we teach people frameworks that they can either use and memorize outright or internalize and then just know how to do. Doctors are a little bit like jukeboxes sometimes. If you say the right thing, you press the right button, you get the standard script. It's to make sure that we are saying the things we need to say, doing the things we need to do to ensure good patient care. And this is kind of part of that. It's a mnemonic that is intentionally broad that talks about how we can ensure access needs are met, ⁓ deferring to the disabled patient. So I think it's the disabled person, disabled person ⁓ and other aspects of just ensuring that a medical visit for someone with a disability is successful. ⁓ And the goal of it is again, to ensure good high quality medical care and to implement that framework in people's brains, but also to build trust, to build rapport and to make sure people get the care they deserve. Speaker 2 (22:22) So good. Like the nurse in me is just loving this. Like I'm like, yes, yes. ⁓ Speaker 1 (22:28) I'm sure the nurse in you looked at the adept care protocol and went. Speaker 2 (22:31) Yeah. Yeah, I loved it. ⁓ And again, like, I don't know how widely it's practiced, but ⁓ I think that interactions would have been better ⁓ with it. So and even just like even just the words deferring to the disabled person. Like, I can't tell you how many conversations I've had with our advocates where they have gone into ⁓ you know, doctor's offices and have felt like their experience wasn't heard. Like, like, you know, for example, we had yet one young lady that actually came on the podcast and shared about an ankle injury that she had. And she was expressing, you know, ⁓ this is my issue. I know my body, she has cerebral palsy, you know, I know my body, I know what I need. ⁓ you know, as far as like, whether it's crutches or whatever the things are that she's needing to be able to get to her next. But just so not being listened to, not being heard as a person that's the expert over her body and over her lived experience that she's already had. And so just saying, deferring to the disabled person and valuing that insight is so good. So. Speaker 1 (23:58) It's crucial. You have to listen to your patients. You have to be present and you have to recognize that you will never know what it's like to be in somebody else's body. And especially when it's someone with a disability that they've had for a very long time, they are the expert in their body. That is a form of wisdom that needs to be recognized. Speaker 2 (24:22) For sure. And also, especially like we already talked about, like the nuances of like every individual person. So even if this person, this, you know, this doctor thinks that they, I know cerebral palsy. I get that you have cerebral palsy. I've worked with lots of people with cerebral palsy still like realizing, no, like, you know, it's going to be a totally different scenario and, and, and not going in expecting to know, you know, the answers. So, ⁓ but letting, letting that person leave. So that's just so good. ⁓ Speaker 1 (24:53) think what we're also touching on is a growing, I don't want to say trend, because trend makes it sound impermanent, but a growing and developing. I'm going say trend I don't have a better word. In medicine and medical education, where we're focusing more on teaching things like values-based patient-centered care, we're teaching trauma-informed care, we're teaching narrative medicine. And so the work that myself and the team that I was a part of were doing is in the context of a larger shift in medicine that is focused more on the personhood of our patients and a move away from paternalism and an understanding that our job is to, in many cases, support and advise and to find a place with our patients where we've given them the information and support to make the decision that is right for them in their body. And that requires listening and being present. Before we move on, I do want to say, mentioned everybody's name in my team but one. And if I don't mention Dana, like, I need to mention Dana. So for adept care, it was Sandy and Lauren. ⁓ And then I was brought in along with Dana Rubinstein and ⁓ Lydia Smeltz to further ⁓ revise the adept care protocol. And Lydia eventually wrote the paper, Dr. Smeltz now, but Lydia. Speaker 2 (26:30) I I'll make sure to include like all the names under so under the part that tells about what we're talking about. I'll include those names so that you can know that you've given everybody their props. You mentioned a word and I just, I lost it because I went off thinking about that paternalism. Is that what you said? Yeah. What does that mean? Speaker 1 (26:53) Oof, paternalism. So paternalism is an attitude in medicine that we are largely shifting away from. So it's the old fashioned version of, to over exaggerate, you do what I say to do because I said to do it, ⁓ because I know it's best, which is something we're trying to get away from. In certain emergency situations, there is a space for, this is the thing we need to do. We need to save somebody's life. This is the decision to make in conjunction with if there's any, you know, advanced care documents, if there's a genetic or sessing order, like keeping all that in mind, there are spaces for it, but we're moving away from it as a field because it's not, it's not. timed and it's not appropriate in many settings. Speaker 2 (27:57) I think now too, especially because people are like, you know, back in the day, nobody was, nobody really had access to the information they needed to kind of be able to really have a back and forth conversation with the doctor about certain things. But now there's so much information available to people. And these, you I think that the newer generations are, you know, absolutely like, no, I want to be very much a part of the decisions that you're making with my healthcare. I wanna ask all the questions. I wanna make sure this is the best decision for me. So I can see how that has changed just with the age of information and the access to information that we have now. Speaker 1 (28:39) Absolutely, patients should be fully informed about their care and be fully invested in their care and they are making their own decisions. Speaker 2 (28:48) Yeah. Speaker 1 (28:51) I, yeah. Speaker 2 (28:51) So, ⁓ as you ⁓ translated learning objectives into like actual scripts for like a well visit or basic, basic physical exam, what's one key piece of feedback or insight you received from the hive advocates that fundamentally changed how you approach like a particular assessment component. Speaker 1 (29:10) So something that is best practice is always to do an exam on an exam table out of a wheelchair. That is 100 % best practice. When we were recording some of our videos, some of our advocates, Tres included, didn't want to be examined out of their wheelchair or we tried and they didn't feel comfortable, so they went back. And I think that that experience of this is the best practice and this is ideally what would be showing, but also this is the reality of patient experience, of bodily autonomy, of consent, of saying that may be what you want to do, but here's what we're going to do today. This is my body. Here's what I'm consenting to. Here's what I'm comfortable with, I think is a really key piece of the videos and a really key piece of what we're trying to get across. So to be very clear, in an ideal situation, with everything being safe and equal, you do want to do physical exams out of a patient's wheelchair on a exam table because there are certain things like abdominal masses that can be missed if somebody isn't lying flat and you can't really feel. Also for things like skin checks. ⁓ But also if if somebody doesn't feel safe or doesn't feel comfortable with it and they decline. You can explain why you feel like it's important, but at the end of the day, that is. Their decision, and they should still get the best high quality exam that you can give them from their wheelchair. Speaker 2 (30:56) Yeah, that's good. just to put that in context, like for our for Tres, because, you know, he's in a he's in a power wheelchair. He uses it for mobility ⁓ and he has it's a custom wheelchair. So it's yeah. And so for those of our listeners who, you you go to a doctor's office and they have this like, really skinny exam table and Tres was just really was worried that he would. roll off or fall off because there was no stability there, no guard rails, no anything like that. And I also think it just matters the context of why you're going into the doctor. I mean, obviously if you're going in because you're concerned that you might have an abdominal issue or appendicitis or something like that where you need a good abdominal assessment, then we would have to maybe look beyond that and see, okay, well, what's an option that we can utilize to be able to still get that assessment done. Speaker 1 (31:52) Can I gently push back? Speaker 2 (31:53) Yeah gently. Speaker 1 (31:56) I would argue that no matter what reason you're going to the doctor, you should get a high quality physical exam if you're going for preventative health visit or well visit that is a complete exam, even if you don't have a concern. That is a fundamental aspect of patient care and preventative care. And so a lot of things are caught before we know that they're a problem. And it is... the care that everybody should be getting. People with disabilities are no exception. And so it may just be that it requires more advanced thought and practice and finding an accessible doctor's office if possible, which I know is not a thing. One would hope. There are new DOJ rules as of about a year ago that are pushing for ⁓ Not pushing for there are as of as of about a year ago, the Department of justice. Formally adopted requirements from the US access board about accessible medical diagnostic equipment. ⁓ Essentially saying that there needs to be. ⁓ An accessible exam table and an accessible scale. And transfer equipment with somebody that knows how to use it. In medical settings. Might be slightly paraphrasing. ⁓ There are several years in which healthcare systems have to do that. It's also a very low bar. ⁓ But as of now, those are the rules that may change. ⁓ But I think the important part of it is educating our patients, but also our physicians. Speaker 2 (33:42) Yeah. Speaker 1 (33:51) very importantly, our positions about how you do a high quality physical exam on someone who uses a wheelchair and why we do the things we do, not just how to do it, but why. And so if somebody really can't be transferred or doesn't want to transfer, they don't feel safe, then perhaps that comes to another conversation about Next steps, what do we need to do to make sure that this person's health is looked after? So not to contradict, but just to gently push. Speaker 2 (34:26) that. It's so good. And you're right, prevention is everything. Like, ⁓ and catching things early is everything. Speaker 1 (34:34) something you're taught to do on all of your patients. So every patient in a preventative health visit, by and large, is probably getting an abdominal exam, heart, lungs, tummy. And so they should be getting it like everybody else. Speaker 2 (34:49) Yeah. And again, like to like, I'm just thinking too with, ⁓ Tres and I know like some wheelchairs will modify all the way back to the, to a laid back setting to where that could also be an option, but, ⁓ no, that's really good. ⁓ so what the videos, like once they're complete and utilized in actual medical training, what do you envision will be the biggest, like positive change in how future doctors interact with and assess patients with disabilities compared to like current standard practice. Speaker 1 (35:21) Honestly, I'm hoping for more confidence. I think people get really scared and they don't want to ask. They don't know who to ask. They don't know what to ask. And so just having these good solid examples will make people be more confident. Because once you know the basics, once you know the baseline, you can learn more. You will learn more. But you'll feel confident enough that you know where you're starting from. to really engage your patients in conversation and say, what works for you typically when you do this? Or, okay, I hear that this isn't something that you wanna do. Here's why I think it's important. Let's figure out a way that your health is looked after while you feel safe. Or, ⁓ you couldn't get your pap smear because they didn't have an accessible table. Let me make some calls or let me have the office social worker make some calls. Knowing how to feel comfortable enough to start those conversations, to engage your patients, and to look for ways to improve accessibility and meet access needs. That's the main goal. Because I think once that little accessibility filter goes in in your head, it changes how you see the world. And that's the hope. The hope is that people will just be more comfortable, change their viewpoint, be less afraid. and be better engaged in a way that improves patient care. Speaker 2 (36:49) I love that. ⁓ So this project is a true partnership between USF health medical students in the hive. ⁓ How has the collaboration enriched your learning experience beyond what you might gain from like a traditional textbook or lecture? Speaker 1 (37:05) Fantastic. mean, anytime that I can, anytime that I can interact with people, it's a good day. Right. So as you said before, nothing about us without us, right. Having good, high quality community partnerships is crucial to having a good educational product. because otherwise it will not be the thing it needs to be. And I think the feedback we've gotten along the way has really shaped our process, but also just hearing people's stories, having people feel comfortable enough to like ask questions when they come in or be like, hey, this thing's always happened when I was seeing a doctor, what's that about? Like seeing. seeing how this is like a bi-directional relationship. And hopefully, like you said, I'm so happy that one of your advocates came away from a panel feeling hopeful. We want that and we want that word to spread. And we want people to know that there is like a brighter future. And that if they're not seeing it, they should push for it, which I don't think advocates need to be told. They already know this. I'm not saying that we're trying to start a revolution, but just to reinforce this idea that progress is happening and there are people in medicine that care, that see it, that want it to happen and that know that it's important. And I know that's not gonna heal the hurt. I know there's a lot of medical trauma. I know there's distrust. Hopefully partnerships like this can help everybody and make everybody feel like we were on the same team. We are one team. We want good high quality patient care. Everybody wants that. ⁓ And that our goal is to work together and not just in our own little silos. Speaker 2 (39:21) I love that. So Nora, this is not a question I told you I was going to ask. That I'm just listening to you this whole entire time. one, impressed with your advocacy and your heart and listening to your language. You know, I can tell that you've been paying attention and really, really learning and listening about from the disability community. Why? What got you into that space where you felt like you wanted to be an ally? Speaker 1 (39:55) So I'm the disability community myself. ⁓ I have been have been me for a very long time. But I think a lot of my interest started when I started medical school. Because I think before then, I'd always been in smaller communities that were a lot more accessible and accommodating. And med school is a bit like a treadmill. Or once you get on, you stay on, you get off. It's hard to stop and start and I had a year of health leave. At the very beginning of medical, if I started medical during the pandemic. And moved across the country and very quickly needed to take a year of health leave. And during that year, I experienced more ableism than I ever had and I was spending more than my rent, my downtown Tampa rent. On health care every month. And I had career threats ⁓ because I was the person with a disability in medicine. ⁓ And it was around that time, again, as there was a movement nationally around disability advocacy that ⁓ Zainab Denami, who was at the time a medical student at Stanford University, she had ⁓ created a national version of medical students with disability and chronic illness. And I joined before there was before there was even a board. ⁓ I think we were like the 5th chapter at usf. I founded our chapter. Wow. ⁓ And then I was on the board for. Like, when I came back, so my 2nd, 1st year of medical school all the way through when I graduated and I'm now on their nonprofit board and like an ex officio position as the immediate past executive director. And in that we. Went to a national council and disability meeting where. Zana was invited to be part of a panel and I gave public comment. We won along with our. Associate director and associate director if I'm like, Katie on we won 1 of the American association for people with disabilities, Paul G. her and emerging leader awards in 2024 for our work. ⁓ So we've, and we went from a group of 20 people on a zoom call to over 50 institutional chapters. Five zero at medical school. Speaker 2 (42:29) Wow, that's so good. Speaker 1 (42:33) Yeah. And so for years, like, I used to manage our email and we always got emails from disabled med students all over the country being like, I feel alone. I think I'm the only one. And we got to welcome them in and be like, you are not, you are part of the national community. Welcome in. Speaker 2 (42:55) I love that so much. I just literally have chills because, you know, I just feel like that's the typical sentiment that I hear from people with disabilities, no matter where they are, no matter what area that they're working in is I'm alone. Right? ⁓ Traces, my son's, he writes music and his trade name is unknown overcomer. Right? Like just this unknown person and this big culture that we live in. And he also oftentimes calls himself an outsider. And so I just think that that's, I love that there's spaces being created for medical students with disabilities ⁓ to give them resources and support and community. ⁓ Because also we know that by having their voices in the medical community, it will make the medical community even better when it comes to thinking outside the box. And also when it comes to patient care for individual disabilities, right? So, ⁓ and so many other areas, but that's. That's good and thank you for sharing that. ⁓ So let's talk research because I love research ⁓ and I really want the Hive ⁓ to be a research-based space on inclusive living and what kind of outcomes we'll see mentally, physically, and spiritually and emotionally by being in a community where all of the supports are right there in the development. and also in a space where you feel like you belong, right? Just ⁓ even looking at belonging and how important that is. so, ⁓ and we kind of got into topics of research before we even like started the button. and you were just talking about how there's not even enough research that even. ⁓ that even considers the person with disability within the research type studies that are being done, right? So talk a little bit about that. Speaker 1 (45:07) Yeah, so the specific study that we were talking about is the one that the CDC numbers are based in, which is saying that roughly a quarter of Americans, adult Americans in the US live with a disability. And when you actually look at the paper, it includes people, it only includes people that are living independently. So it doesn't include people who live in institutions. And so even in our most commonly cited numbers, like every time I read an academic paper about disability, cites that number. we're missing a large portion of our population. ⁓ Disability is a very nuanced topic. As are many things, ⁓ and it makes it hard to research as are many other topics. Because there's multiple definitions, there's multiple approaches. And there's a historic level of disenfranchisement, not disenfranchisement, disenfranchisement is about voting, but a historic level of. research exclusion and abusive behavior, Like, ⁓ I mean, a lot of, especially when it comes to mental illness and intellectual disability, those are two populations where there's been a lot of historic. Speaker 2 (46:11) exclusion. Speaker 1 (46:27) ⁓ historic bad behavior and on the part of researchers. ⁓ And so I think there's. I think there's a level of wariness, both from researchers and from the communities themselves. Actually, I don't know that. I don't know that it's the wariness on researchers. think there's wariness in the community. I think, I think there's something hard to get an IRB approved. But I think it depends on your institution. Like IRBs are so institution dependent. I'm trying to get the good... Oh yeah. So the institutional review board is an ethics committee for human subjects research. Speaker 2 (46:57) So people with IRBs. Speaker 1 (47:04) So if you're working with animals, it's IACAC. If you're working with communities of people or people in general, it's Institutional Review Board and IRB. And that is made up of both people within an institution and community members. So they all include community members. And basically they are the people who decide through an institution whether or not your research is ethical. And how and set guidelines for how ethical research is conducted. And so there is some time there's a lot of. I don't know where I'm going with this. I'm just explaining what an IRB is getting. Speaker 2 (47:48) That is good because, you know, I know that somebody is going to be listening and be like, wait, what is that? is that? You told me, explained it like, yes, the review board basically. Speaker 1 (47:54) No, so Yes, review board and so all research that we do has to go through a review board with the exception at some institutions of quality improvement. So, if you're doing ⁓ internal improvement projects for an institution, like a hospital floor wants to try to make something better. And they just want to do it internally that may not need. Approval, but anything that has potential. risk involved. And anything that has that that might be outward facing has to go through an IRB process. ⁓ And that includes educational tools. So, like, our educational tool will have to go through an IRB approval process to be able to be shown to medical students to be reviewed. Speaker 2 (48:46) So, what message would you share with other medical students across the country who might be interested in advocating for a more disability inclusive education or for engaging with the disability community? Speaker 1 (49:01) Go for it. The advice is go for it. Show up, be an advocate. Do your reading. Do your listening. Make sure that you're amplifying voices, not speaking over people. Speaker 2 (49:16) So good. Speaker 1 (49:18) ⁓ And I think there's a desire to want to wait to find an advocate in your institution to kind of glom onto to work with. If you're not finding that person, that means you are that person. And as a medical student, you have more power than you think you do, especially around education. Speaker 2 (49:35) love that. Speaker 1 (49:45) Because if students are ever lobbying that there's something that they want to learn, a student lobbying for more class time and more work means that it's important to the student. And therefore usually gets attention. But yeah, I mean, if your school has an MS DCI chapter or an AADMD chapter. Speaker 2 (49:55) to it. Tell us those acronyms again. Speaker 1 (50:10) Medical students with disability and chronic illness chapter. There's also disability advocacy coalition in medicine, which is another similar one that's interprofessional in a way that MSCI is much more for med students. DocMed is more interprofessional, but smaller, but they do lovely conferences every year. ⁓ And the American Association ⁓ for Developmental Medicine and Dentistry is ⁓ Another organized medicine organization that has institutional chapters. And so these are good places to find like, minded people. If you can't find 1, start 1. And. Find ways to get involved in your community, you are going to be where you are for 2 to 4 years, depending on how your med school has to move around. That is enough time to get involved and when you leave. make sure there's someone to take over from you because otherwise everything you've done will crumble in a way that you don't want it to. Speaker 2 (51:12) So good. Well, Dr. Newcomb, thank you so much for just your insight. Thank you for reaching out to the Hive for this collaboration because again, I love that our advocates were empowered to really ⁓ share their stories and ⁓ share their experiences to help create these assessments. And so ⁓ I'm super grateful for USF for seeing the value in that. ⁓ And good luck to you in the future. Thank you so much for being on podcast. Speaker 1 (51:46) Thank you for having me and thank you and thank you to you and all your advocates and everyone for being so wonderful and so supportive and so invested involved in all this process. And I'm so hopeful for what this will be. Speaker 2 (52:03) love that we're ending it with that. We're hopeful. We're hopeful for the future of medicine. Speaker 1 (52:08) feel like that's, yeah, that's just the way to be. Speaker 2 (52:12) Right? Yes, absolutely. Thank you for joining us on Talking Inclusivity with The Hive. We hope the stories shared inspire and empower you. Remember, every voice matters and every action can make a difference. If you haven't gotten the chance to listen to the About Us episode, a link will be provided in the show notes. Learn more about The Hive's journey for inclusive housing in Tampa. If what you hear resonates within you, Join the movement, hit subscribe and join our tribe. Let's continue to build a world where inclusion is the norm.  

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