In this episode, we talk with Dr. Marvin Natowicz, faculty lead for the Disability Action Group, and Samantha Stallkamp Tidd, a fifth-year medical student who serves as the student lead of the Disability Action Group at the Cleveland Clinic Lerner College of Medicine. They explore the group’s efforts to embed disability-related content into the medical program curriculum and foster a disability-sensitive mindset among students, with hopes of creating a better quality of life for persons with disabilities.
In this episode, we talk with Dr. Marvin Natowicz, faculty lead for the Disability Action Group, and Samantha Stallkamp Tidd, a fifth-year medical student who serves as the student lead of the Disability Action Group at the Cleveland Clinic Lerner College of Medicine. They explore the group’s efforts to embed disability-related content into the medical program curriculum and foster a disability-sensitive mindset among students, with hopes of creating a better quality of life for persons with disabilities.
Dr. James K. Stoller:
Hello, and welcome to MedEd Thread, a Cleveland Clinic Education Institute podcast that explores the latest innovations in medical education and amplifies the tremendous work of our educators across the enterprise.
Dr. Tony Tizzano:
Hello. Welcome to today's episode of MedEd Thread an Education Institute podcast exploring the Cleveland Clinic Lerner Colleges of Medicine Disability Action Group. I'm your host, Dr. Tony Tizzano, Director of Student and Lerner Health here at Cleveland Clinic in Cleveland, Ohio. Today I'm very pleased to have Dr. Marvin Natowicz in the department of pathology and laboratory medicine and on faculty at the Cleveland Clinic Lerner College of Medicine, and one of our fifth year students at Lerner here to join us today. Marvin, Sammi, welcome to the podcast.
Samantha Stallkamp-Tidd:
Thanks for having us.
Dr. Marvin Natowicz:
Thank you for having us.
Dr. Tony Tizzano:
In today's segment we'll take a deep dive into CCLCM's Disability Action Group that works to embed disability related content into the curriculum and foster a disability sensitive mindset with hopes of ultimately creating a better place for persons with disabilities to live.
So, Sammi and Marvin, to get started, can you tell us a little bit about yourself? What brought you to Cleveland and your work here at the Cleveland Clinic. We'll start with you, Sammi.
Samantha Stallkamp-Tidd:
Thanks for having us, again. So, my name's Samantha Stallkamp-Tidd, I'm from Lima, Ohio. I went to undergrad at the Ohio State University and then decided to come up here to my dream medical school, the Cleveland Clinic Lerner College of Medicine. So I'm in my fifth year applying for neurology residency programs, and created this little group with Marvin here.
Dr. Tony Tizzano:
Fabulous. Marvin?
Dr. Marvin Natowicz:
Hi. So I'm Marvin Natowicz and I'm a medical geneticist and clinical pathologist and I'm very involved with our medical school here. I've been involved with it since the very first days of its creation, and I'm very pleased to be here today with you.
Dr. Tony Tizzano:
And we are just excited to have you. So, Marvin, could you maybe start by helping frame the topic of disability or maybe even the term disability for our audience? And the mission of the Disability Action Group.
Dr. Marvin Natowicz:
Okay, so this is a really important question and disability can be variably defined and there's a lot of different types of language that have been used to characterize persons having disability or handicap or limitation. And it can sometimes be a very charged vocabulary that is used but it's an important topic to bring up because a large percentage of the general population has one type or other of a disability or limitation or chronic medical condition. In fact, depending upon how one does the defining and the methods used to ascertain persons impacted by disability, at least 25% of adults in the United States are living with one or more types of disability, which means more than 60 million adults. There's also a very large number of children either having intellectual disability or developmental disability or some very specific type of physical handicapping condition. So the numbers are very large of persons affected with disability. And in fact, there's barely an individual or family in the United States that doesn't have someone in that family who has a disability of chronic medical condition, or a neighbor, or some loved one that they have some type of relationship with. And all of us actually will have a disability at some point in our lives if only pre-terminally.
So this is a really important topic to have a discussion about and I'm glad that Sam and others at our medical school have joined together to make sure that it becomes a meaningful part of our curriculum.
Dr. Tony Tizzano:
So, Sam, when you look at all of this, you know, what is the idea that your group is trying to foster and- and what hurdles have you had and where have you gotten thus far?
Samantha Stallkamp-Tidd:
Yeah, so there's been a national need and a national call for more disability in medical education. We both kind of got into it due to our own families being affected by disability. And my younger sister has spina bifida and my mom has MS and, you know, growing up in that disability, you know, sphere, I knew that they needed adaptation. When they went to the doctor I knew that there needed to be things that, you know, I thought about and I kind of thought that that's something that I would learn naturally in medical school, they'd teach us how to, you know, adapt exams and we'd learn all about disability. All the different things that you need to help your patients outside of medicine, all of the paperwork that you have to help them with and resources that you should be able to connect them with. But sadly, it's just not the case around the country.
Here at Lerner, when I got here, we had more than most places in the entire country due to Marvin and a lot of what he has really piloted and spearheaded through the program. Having sessions on meanings of disability and all of- of really wonderful lectures regarding the disability topic. But there were a lot of things that were not talked about that I- I was very passionate about and I talked to Marvin about it after one of his wonderful disability lectures, and we got to talking and we decided to form this group to kind of try to get more disability topics that should be in every medical school into our own curriculum. And it's kind of snowballed into a group that we're now trying to make medical educational materials, medical education programs that not only we'll use in our own school, but hopefully we'll be able to share with the rest of the country to really bring disability to an important place where it deserves to be in medical education.
Dr. Tony Tizzano:
So, creating a better model?
Samantha Stallkamp-Tidd:
Yes.
Dr. Tony Tizzano:
Well, you know, Marvin, you only have to hear yourself talk for just a second and you see the enthusiasm, hear the enthusiasm in your voice. What sparked this interest in... For you?
Dr. Marvin Natowicz:
So, like Sam, initially my personal background was and is relevant. I grew up in a family where one of the members of my family had a chronic medical condition that limited a lot of life opportunities and posed a lot of day to day difficulties. And currently, several members of my family have significant disabilities including my oldest child who has multiple severe handicapping conditions. And so that, just like Sam, has sensitized me from long ago until now the issues faced by individuals with disability and just going through daily life. And how that impacts on all of the family members, not just the person who has the chronic medical condition. So that is one way that I came to this.
The other way that I came to this is my interest in medical education. As I mentioned a- a few moments ago, I've been involved in our medical school from its very earliest days. And I noticed a number of major gaps in the curriculum, one of which has to do with instruction and meaningful learning experiences relating to disability related matters. And I was very interested in trying to get our curriculum more enriched in this important area. As you know, because you're like me, very involved in practice of medicine, when one goes to medical school, you learn anatomy, you learn physiology, you learn pathophysiology, you learn how to become a good diagnostician, you learn what is the state of practice regarding what medications to apply for the diagnoses one makes and one learns when to appropriately refer for surgical procedures. And all of those things are incredibly important.
In essence, if you crystallize what those activities mean, they mean that you become a very, very good technician. And again, I wanna stress all of those things are very important. But there's more to being a really good clinician than just knowing what medicines to prescribe. The best medical practitioners have an understanding about what Sam mentioned a few moments ago, the meanings of disability. What does it mean to be a 31 year old woman who's come down with Multiple Sclerosis, and who is an attorney and how that multiple sclerosis has impacted her mobility, her ability to get to work, her ability to do her work, her ability to have normal family relations and normal social life? There are ways that clinicians can impact positively for her and for her family if you know the meanings of the disability for her that are not just acts of prescribing a medication.
Dr. Tony Tizzano:
Boy, I can... All of what both of you have said really resonates with me, and I can't think of a single iota of training I got regarding it during medical school, which was I know a while ago, but still.
Dr. Marvin Natowicz:
So I recognized this gap in our curriculum right from the outset and what I would consider polite, cordial ways, collegial ways, I tried to affect change. And over time, and you can see I have gray hair and I'm an old guy now-
Samantha Stallkamp-Tidd:
(laughs)
Dr. Marvin Natowicz:
... I have come to recognize that the responses I got early on, from talking to various persons within the organization, fell into two camps. One camp was, "Oh, Marvin. This kind of hippie stuff about meanings of disability, I'm not sure we really need it. I went to," and you can fill in the blank for the name of the prestigious medical center, "I went to, blank, and I turned out great." So that was one type of response.
The other type of response that I got was, "Marvin, you're right. This is pretty important stuff. But you have to face reality. There is so, so much medical students today need to learn and the curriculum is already jammed packed, it cannot handle one drop more of material."
The first approach to addressing the meanings of disability issue as I call it, I won't address. It disgusts me. The second approach that I heard has truth to it. There is a lot to learn and the curriculum is jam packed. But a good educator can figure out ways to navigate this problem and introduce this very important material in a way that isn't unduly burdensome.
Samantha Stallkamp-Tidd:
I just wanna say too that there... Students want to learn this. I mean, you- you mentioned you were excited about the prospect of being able to learn this. You know, when I talked to my classmates when I came and one of the things that, you know, I really wanted to learn coming to medical school was, you know, how would I adapt an exam for someone in a wheelchair? Or who had mobility issues? How could I make sure that I'm doing everything right? And that's the first response when I brought that up very early on in my medical school was, "Well, you'll learn that in residency." But doctors don't learn hat in residency. A lot of them are just scared to work with people with disabilities. They'll skimp on exams, and it... because they don't have the experience. And it's really unfortunate that there's a very large percentage of doctors, and they've done survey studies on this, where a very large majority of doctors do not feel comfortable taking care of persons with disabilities. And you heard the numbers earlier.
Dr. Tony Tizzano:
Right.
Samantha Stallkamp-Tidd:
It's so many. And, you know, un- unfortunately people do suffer because of this inadequate education. My family personally knows someone who passed away from sepsis after a pressure ulcer went unnoticed by several physicians because they didn't do a full exam. Because we're not taught how to do transfers safely. A lot of times we don't even know what to ask for to make exams accessible for our patients. And just showing medical students, it doesn't take much, the parts of the exam that they can adapt, get creative. How can you do this? Thinking through those. Well that gives the student the tools that they can use to then show other people at their institutions how to correctly examine, interact with persons with disabilities. And I think that's why I'm so passionate about it because, you know, I want the care that, you know, persons with disabilities to receive to be just as great as anyone else.
Dr. Tony Tizzano:
Yeah, that's fabulous. And that takes- that takes being proactive, no two ways about it.
Marvin, you wanna-
Dr. Marvin Natowicz:
Yeah, so just along the same lines that Sam was just mentioning, think of persons who are requiring a wheelchair, for example. Many of them don't have appropriate abdominal exams. Many of them don't have full skin exams. These are very fundamental parts of exam. Even more fundamental arguably is just taking a weight.
Samantha Stallkamp-Tidd:
The ways that they do have to weigh persons with disability, they're often dehumanizing. My sister, she hurt her wrist. She couldn't use her crutches. She didn't have the ability to get on a scale and her chair could not fit on the scales at the institution that she was receiving care. They had her go to a vet to get weighed. I mean, if you- you think about how many things that persons with disabilities go through without adaptations in this world and to say, for this very basic medical thing, "You're gonna to have to go to a vet."
Dr. Tony Tizzano:
You're getting your weight done, yeah.
Samantha Stallkamp-Tidd:
Yeah.
Dr. Tony Tizzano:
Casting light on this very embarrassing moment in my medical education. During medical school, pre-operatively anesthesia wanted the weight, and it was a woman of size and I was asked to take her down to the loading dock to be weighed. And I the whole way down, I remember thinking to myself, "How can I couch this when we arrive to the loading dock?" I just... It was... To this day I remember. As soon as you began to mention it, it just sparked right away in my head. So-
Dr. Marvin Natowicz:
And again, to what Sam has brought up, the idea of adaptations. There are so many adaptations that can be implemented provided one has some depth of understanding of the meanings of disability for that person who has disability X or chronic condition X at his or her particular age, and ways to help their family. I'll just give two very telling examples in addition to what Sam has mentioned.
You have a person with severe arthritic condition who is very afraid of being locked in his or her bathroom because he or she is unable to twist the doorknob. If you understand what that arthritic condition impacts on that person's day to day life, you can make the recommendation about changing the way to open and close the door to a type of handle that you can move with your body instead of trying to twist it with your hand. Problem solved. But you have to have an understanding of the meaning of the disability in his or her life.
Or for example, suppose one is working with a family who has a child with very challenging behavioral phenotype that results in the parents being chronically sleep deprived and very burdened with taking care of that child, say a complex form of autism in the child. You can do wondrous things by educating the parents of that child about the availability of respite care. You might even prevent terrible stress that could otherwise result in divorce. You might be able to enhance their ability to maintain their job. Because if they're terribly sleep deprived, they may not be able to do the best work at their job.
So you can have tremendous, tremendous benefits if you understand this accommodation called respite care and its availability and... But to do that you have to know about the meanings of the disability for the child, for the members of the family of that child, and how it impacts on everyone and what is available. What are the resources that are out there? And those are gaps in medical education. I'm not trying, and Sam is not trying to turn medical students and medical professionals with MDs or DOs into social workers, but you have to have some depth of understanding about meanings of disability if you wanna have the best quality of clinical practice.
Dr. Tony Tizzano:
No question. Sam, I can see you'd like to add to this.
Samantha Stallkamp-Tidd:
Yeah. I mean, I think to be able to make adaptations, you need context. And that's what a- a lot of our group is trying to accomplish. I mean, I'll give you an example. This is actually probably the story that led to the development of the group and brought up the conversation that I originally had with Marvin that led to us discussing making the group was during my first year of medical school I noticed that we had a new building. We had... The doors were very heavy for the bathrooms. And I noticed it. I thought. "Oh, maybe, you know, I'm just weakened in my newly medical student state. Maybe they're not as heavy as I think." But one of my classmates sprained her ankle rock climbing our first year and was on crutches. She could not go to the bathroom by herself because she could not push that door open. I immediately thought, "Well, this isn't ADA compliant."
And I contacted the maintenance team and they said, "Oh, no. It is." But I just had this feeling in my gut and I saw the need of my classmate. I mean, I don't think it's a reasonable accommodation to have someone go with you to the bathroom every time you needed to go to the bathroom in medical school.
Dr. Tony Tizzano:
Sure.
Samantha Stallkamp-Tidd:
It... That's not a reasonable accommodation. So I looked up how they graded doors. And I bought a pressure gauge and I brought the pressure gauge in. I looked up how to do it properly and saw that it was five times the weight that you needed to open the door. It took 25 pounds of force, when I believe legally it's five.
Dr. Tony Tizzano:
Wow.
Samantha Stallkamp-Tidd:
And when I brought the numbers to them, they then changed the doors. I needed the context of seeing how it impacted my classmate. I've been exposed to disability all my life. It's those exposure to context that is so important. And that's what... The program that I think I'm most proud of is one that's still in development and- and that's our disability buddies program. And that's what that's trying to do. We're trying to give medical students the opportunity to get to know people with disabilities outside of the medical setting. How is it to walk around this world with a disability? You can't really know that if you don't have a disability, but you understand a lot when you love someone with a disability, you exist in the environment with them, and you advocate for them, you advocate with them. And that's what this whole project is trying to do is give medical students the context so they then seek adaptations for their patients and know what adaptations they can make.
Dr. Tony Tizzano:
Yeah. Those are great points. And I think one of the things, there... You point out, Marvin that the percentage is huge and we're talking about enormous 60+ million persons in the United States. And perhaps if nothing more, the awareness and ways to communicate. Because the first thing to do is shut down. When you're uncomfortable, you see someone coming in a wheelchair, or you know, is- has got a crutch and is really having a difficult time, there's a part of most of us who'd look at avoidance as one way to cope with that. As opposed to becoming comfortable enough to say, well you know, "Come on, let me give you a hand," and when they get into your office say, "Tell me about what's going on with in your life. What works well? What doesn't work well? What are ways that I can help you that may not even have anything to do with this visit?" Just so you make the person comfortable and willing to have the conversation.
And, you know, I- I like to fancy myself, and I don't wanna get off the subject, but as a bit of a historian, medical historian, and I- I looked at the 19th century and before and it was all about surgical procedures and technique and what have you. They had lots of great ideas, if only we had washed our hands.
Samantha Stallkamp-Tidd:
(laughs)
Dr. Tony Tizzano:
But that was the problem. Down the road, in the 20th century it was really therapeutics and imaging. We finally had medications that worked and we had CT scan and X-ray and so on and so forth. I feel like the 21st century, I hope will be remembered for our focus on the psycho-social aspects of medicine that have always been lacking. And of course there's informatics which we'll hopefully begin to tackle the, you know, breakneck pace in which medical advances occur. So I think this work is really important.
For both of you I wanna talk about something that you had mentioned to me, Sam, earlier. You suggested an adaptionary.
Samantha Stallkamp-Tidd:
Yes.
Dr. Tony Tizzano:
I thought that was a fabulous word. Tell us what an adaptionary is.
Samantha Stallkamp-Tidd:
So, medical education these days, if you ask any medical student how they study or how they prepare for lecture or, you know, the exams, they'll say, "I use video resources. I go online and I use these incredible video resources online."
Our group, we thought, well, one of the main things we want is to curate videos that medical students could watch and learn, "Oh, this is how I can adapt X-Y-Z exam for someone in a wheelchair." And so we thought maybe some of these videos already exist. So we went about trying to find them. And there's not that much. (Laughs) and so that was the original idea for the adaptionary, and we ended up saying there's actually a lot of great educational material coming out of many places in the United States. Stanford's a great one, Michigan does some great disability advocacy work. And they've come up with frameworks of, you know, how to bring up adaptations in exams, things like that.
But there really isn't this video guide to say, "Show me. How do I do this?" It's one thing to read, it's another thing to show. We're trying to develop a video project that kind of goes through various adaptations. It's not going to be, you know, completely comprehensive, but at least we're trying to get there.
And the adaptionary I think it's still something I think is a dream that I would love just this database where a student could say, "Oh, I have a patient with autism and in their chart it says that they have sensory sensitivities. How can I adapt?" And they could go on the adaptionary, type in autism or sensitivity, and a video would pop up with someone talking about various ways they can adapt. I would love for that to be just something people have in their back pocket. Because I think what a lot of physicians face in these situations is they have time constraints, they have patients who might need adaptations. They might not even have time... I mean, I personally think that they should make the time to think through how can I adapt to this patient but sometimes they're- they're pushed to their limit and so they then just don't do the exam. They just don't do that. But if it was so accessible to everyone to learn how to adapt certain parts of the exam, well, I think that'd solve a lot of problem.
Dr. Tony Tizzano:
It sounds like a job for the Sim Center, that you could work with the Sim Center and develop a tool or a toolkit that had, even if it was animated, to show some of the different maneuvers that you could use. So, you know, I- I love listening to this.
Marvin, I have to ask, so, you know, you've got this all underway, you've got these projects, but how has it evolved from its inception to where you are now?
Dr. Marvin Natowicz:
So we're still a young group. We're still in formative stages. The number of people who are involved has grown. We have about 15 or so regulars and then there's a large number of people who want to be on our list of receiving the minutes, and they keep in touch with us through that and by phone and other ways of contacting. So our reach has broadened. Our group is diversified, it's not just persons associated with the Cleveland Clinic School of Medicine. There are physicians outside of the school of medicine who are part of the project. There are persons from the so-called general community, some of whom have disability themselves, some of whom have children with disability. They're all embraced as equal members of our group, very valued members of our group. So we've grown in number, we've broadened our scope of projects. Initially, as Sam mentioned, we were interested in direct applications of our ideas to improve the state of the curriculum at our medical school and we're still very involved with that, we have several different projects in that regard. Um-
Samantha Stallkamp-Tidd:
And some successes, too. (laughs)
Dr. Tony Tizzano:
Oh, I'm sure you have. In- in fact, I'm looking at what lies on the horizon and you sparked my interest in a previous conversation with a study involving four different groups of individuals that you're going towards an IRV for. Do you wanna comment on that? Do you recall that conversation? You know, adults with Down syndrome and on and on?
Samantha Stallkamp-Tidd:
Yeah. So this was the brainchild of Steph Mead, who is a wonderful 4th year student that's involved in the group. And we have members of the community, we have members that do have disabilities themselves or are very close to loved ones with disabilities. But we also think that it's necessary to gather data. I mean, this is a research school after all.
Dr. Tony Tizzano:
Sure.
Samantha Stallkamp-Tidd:
And one of the things that we're trying to create right now is a study group... We know we couldn't interview possible disability, the limit does not exist on that and there are so many different types of disability. It looks different for different people. But we wanted one that was developmental, and another one that was more physical. And so we did kind of iron out to maybe having two groups of individuals, those with Down syndrome both as children and as adults, and those with spina bifida, both as children and as adults. And the idea of the study is to interview them and say, "What do you think a doctor should know about treating someone with a physical disability? With a developmental disability?" And actually collect that data and use that to drive what our group does.
I think if we're not going to the people that are going to benefit the most, why would we even go through with some of our projects. We want to be targeting what is the greatest need.
Dr. Tony Tizzano:
Yeah. And I think that, you know, you've said over and over again, you have to walk in that disabled person's shoes. And that's a hard thing to do because everyone has nuance and differences. And you had pointed out to me before that, you know, comparing their experiences with healthcare systems thus far would create an awareness.
Samantha Stallkamp-Tidd:
Yeah.
Dr. Tony Tizzano:
And the other thing you mentioned was, what would these individuals like to see changed?
Samantha Stallkamp-Tidd:
Yeah.
Dr. Tony Tizzano:
Not what we think needs to be changed-
Samantha Stallkamp-Tidd:
Exactly.
Dr. Tony Tizzano:
... But what do they think? You know, I think it's fabulous.
Dr. Marvin Natowicz:
And that's one of the interesting aspects of the buddy project that Sam mentioned. She was very explicit in saying how the medical student for this proposed project would meet with an adult with a disability, or a child and family who has a child with a disability in non-clinical settings. So you'd see the day to day experiences, that was part of it. But the other part of it is it changes the traditional dynamic. In most situations the doctor or the medical student is the all knowing professional or professional to be, and there's a power differential between them and the patient or client or family. Here, we're in our proposed buddy project, you have the person with disability serving as the mentor to the student and doing that in a non-clinical setting is important in making sure that that dynamic takes place.
Dr. Tony Tizzano:
Yeah. Flattening the hierarchy is, I think is a key and the whole idea of patients first, taking a clinician or physician off the pedestal and putting the patient on that pedestal, or client as you say. And I know you can add something to that, Sammi.
Samantha Stallkamp-Tidd:
Yes. I just wanted to add this was based off of the effort that Marvin had done at Brandeis. He had a similar issue but here the project has been almost entirely student led and- and pushed forward by myself, but more importantly some younger students and 2nd year students, Katie and Judy, so I wanted to make sure that they were mentioned. Because one of the best things, and I think honestly might be one of the most proud of in medical school is the formation of this group. You know, when I leave after graduation, when I move on to whatever comes next for me, I know that this group at this medical school is going to be carried on by all of the wonderful students that have joined. And so I feel like in the grand scheme of what this group has done, I have only played a small part in starting it. I think it'll continue for a long time and I'm really proud of that.
Dr. Tony Tizzano:
And then I'm sure wherever you go, they will be the benefactors of this experience that you've had.
Samantha Stallkamp-Tidd:
(laughs) Thank you.
Dr. Tony Tizzano:
Marvin.
Dr. Marvin Natowicz:
I just have to add to what Sam has said and contextualize it. What Sam has done, she's done a mountain of work and she's done in the context of having a very hard medical student schedule.
Dr. Tony Tizzano:
Yeah.
Dr. Marvin Natowicz:
It's pretty amazing what Sam has accomplished.
Dr. Tony Tizzano:
I had her for APM III, Art & Practice of Medicine course and I just always loved listening to what she had to say.
Well, I wanna thank you both so much, Marvin and Sam. This has been a very thought provoking episode of MedEd Thread. To our listeners, thank you very much for joining and we look forward to seeing you on our next podcast. Have a wonderful day.
Dr. James K. Stoller:
This concludes this episode of MedEd Thread, a Cleveland Clinic Education Institute podcast. Be sure to subscribe to hear new episodes via iTunes, Google Play, SoundCloud, Stitcher, Spotify, or wherever you get your podcasts. Until next time, thanks for listening to MedEd Thread and please join us again soon.