Experience offers look at needs, concerns of people with disabilities

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be "The Informed Patient" with a podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Students from Upstate Medical University Norton College of Medicine team up to teach a seminar course at Syracuse University. Here to tell us about it is one of the organizers, Amelia Gabor, who happens to be a Cazenovia native and is now almost halfway through medical school. Welcome to "The Informed Patient," Ms. Gabor.

[00:00:34] Amelia Gabor: Thank you, Amber.

[00:00:35] Host Amber Smith: I've always thought medical students hardly had time to sleep, let alone do anything else. But you and two of your classmates have made time to teach this seminar class once a week on health advocacy. What can you tell us about it?

[00:00:51] Amelia Gabor: Yeah, so definitely finding time to sleep is a challenge, but you also find time to do the things you love and to advocate for the things you're passionate about. So, my colleagues and I are really passionate about working with folks with intellectual disabilities. And so we've teamed up with InclusiveU at Syracuse, which is a fully inclusive education program for students with intellectual disabilities. And we teach a seminar course called Health Advocacy. It meets once a week for an hour, and we teach our students everything about health, whether it's personal health or how to navigate the health care system.

[00:01:32] Host Amber Smith: So this is one of the seminars. I know SU has a variety of different topics of these seminar classes. What is the kind of overall goal of the seminar on health advocacy?

[00:01:45] Amelia Gabor: So, the reason we started writing this course was because we know that in the population of people with intellectual disabilities, there tends to be a lot of health disparities. So this population faces a lot of challenges to not only obtaining adequate health care, but just making sure that they themselves are living their most healthful life.

So, in health advocacy, we try to give our students the knowledge and tools to live as independently as they can, and to really live a life filled with comprehensive wellness.

[00:02:26] Host Amber Smith: It sounds like you're helping the students become their own health advocates.

[00:02:32] Amelia Gabor: Right, exactly. And we try to teach them, in addition to personal health skills, this idea that, they can be an advocate for their health and that somebody like a doctor can be an ally for them, when they're thinking about how can I live really independently and safely and healthfully.

[00:02:54] Host Amber Smith: So this was a semester long seminar. What were the specific topics each week? And how did you and your classmates come up with these topics?

[00:03:05] Amelia Gabor: We really tried to teach a wide variety of health topics. So, we talked about nutrition. We talked about fitness, mental health, emotional health, sleep, dealing with stress, so really thinking really broadly about health and trying to teach our students that health is more than not being sick, right? But really this idea of comprehensive wellness.

We worked with administration at InclusiveU to ask them, what do their students really need to learn about health. And a common theme that we saw emerge was this idea that these are InclusiveU students. A lot of our seminar students are freshmen. So this is their first time living alone on a college campus, right? So when I was a freshman in college, it was hard for me to find the balance between school and sleeping and eating well, right? All of that stuff. And those same challenges exist for students with intellectual disabilities at InclusiveU.

So what the InclusiveU administration really emphasized was trying to establish kind of cause and effect connections. So a lot of times the students may come into class completely exhausted, almost falling asleep. And when we ask, "OK, why?" it's really hard for them to ascertain or pinpoint something that has caused them to be tired. Digging a little deeper, we can figure out that they went to sleep at 3 o'clock last night, right? But that kind of cause and effect, that's something we really try to work with the students to develop those ideas.

[00:04:52] Host Amber Smith: What were the topics that were most popular with the students? Was there one week that you remember that they really were engaged and really interested?

[00:05:00] Amelia Gabor: I think the highlight week this semester was when we talked about going to the doctor. So, again, this course is about advocating for yourself through the lens of health, so we thought it was important to talk about going to the doctor, and we asked the students about the importance of going to the doctor, and of course they were able to draw from their personal experience to tell us about doctors help you when you're sick, and they help you prevent illness, right?

But what we also did was we wanted to tell the students why doctors do what they do. So we pulled out a stethoscope, and of course all of our students know what a stethoscope is, but we went into a little bit of the physiology. What exactly is a doctor listening for, when they listen to your heart? Because that was really exciting for the students. And they were really curious about that stuff.

The other thing we did was, we used our own stethoscopes on them, and we listened to their hearts, and we used our reflex hammers. And then we gave them the opportunity to try it on us. Going to the doctor for this population can sometimes be really anxiety inducing. So we figured if we give our students the opportunity to touch and to hold some of the tools, that could be helpful. So they were listening to my heart. They were looking at my pupillary reflexes, shining a light in my eye. And that was really fun for them to not only just experience, but also kind of understand why do doctors do what they do. And then hopefully the next time they go to the doctor, anxiety might be eased a little bit.

[00:06:43] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Amelia Gabor. She's a medical student at Upstate Medical University Norton College of Medicine, and we're talking about a Syracuse University InclusiveU program that she's really passionate about, and the health advocacy seminar she was involved in teaching.

So tell us, why did you want to teach this class? Why were you anxious to volunteer?

[00:07:10] Amelia Gabor: I'm really passionate about working with this population, specifically through the lens of health. It's kind of a two-fold explanation. So, first of all, what we know from research about medical education is that medical students do not get a lot of exposure to working with patients with intellectual disabilities. And then what happens is when they become doctors, they really aren't comfortable taking care of these patients. That creates all sorts of health disparities that we see with this population.

And the other reason I was interested in teaching this class was to try to get at some of those health disparities. So, trying to teach our students the hands-on skills that they can use to enhance their health. We talk a lot about lifestyle changes, so not anything that they necessarily need a doctor for, but the things they can do themselves. They can eat healthy, they can go to bed, they can manage their stress, right?

Those things are what we try to teach our students. So, while we're doing that, we also bring in medical students, some of my peers from SUNY Upstate, for them to try to experience working with this population so that while we're teaching this population about their health, my peers, who may not have a lot of experience working with this population, are gaining comfort. So that when they see a patient with Down syndrome, for example, on rotation, they'll feel comfortable and know how to interact with them, know how to talk to them.

[00:08:49] Host Amber Smith: You seem like you feel very comfortable already working with intellectually disabled. Is that the case?

[00:08:56] Amelia Gabor: Yeah. I have a lot of experience working with this population, and it really goes back to my dear friend from kindergarten. His name's Harry Dydo. And we met when we were 5 years old, and we're 26 now, so he is my longest standing friend.

We met in kindergarten before I really could conceptualize what Down Syndrome was. So to me, Harry maybe spoke a little bit differently and maybe looked a little bit differently, but that really didn't phase either of us. And so what ensued was the formation of a really organic, authentic friendship. Maybe in third grade, I began to realize what a disability was, what Down Syndrome was, but that didn't change anything.

We went all throughout high school together completely locked at the hip. And to this day, he is really one of my best friends. He's one of my favorite people in the world.

[00:09:57] Host Amber Smith: So tell us how V United Scholars came about at Villanova. That's where you did your undergrad, right?

[00:10:04] Amelia Gabor: Correct. So, V United was completely inspired by Harry. Like I mentioned, Harry and I went all throughout high school together. And then we both graduated. And I went to Villanova, and Harry enrolled at InclusiveU at Syracuse. And in those first weeks of freshman year for both of us, we were on the phone with each other, realizing that we were having really similar experiences. And I thought that was just the coolest thing in the world, that my childhood friend with Down syndrome was having the exact same freshman year experience as me.

And so I started thinking, what if I could do something like that at Villanova. And so I talked to the administration at InclusiveU, who were really supportive and really generous and got some ideas from them and then tried to replicate it at Villanova.

We started really small at first -- once a week life skills course that met for two hours -- and then slowly throughout my four years at Villanova, we continued to grow V United. Toward the end of my time, we aligned with some really like minded, really generous individuals who shared our passion, and they were able to give us a really generous donation that allowed us to do what I had always wanted, which was to become a residential program.

So now, V United Scholars is really similar to InclusiveU in that our students are on campus 24/7. They live in the dorms. They're getting a robust, fulfilling college experience.

What is really special about Inclusive U is the way they tailor each student's educations to their passions.

So, for example, my friend Harry really loves sports, and he came into InclusiveU with that passion. So the support at InclusiveU, what they tried to do for him, was figure out how can we have you live your life independently and pursue this passion of sports? So throughout Harry's time, he took classes on fitness and exercise science. And now he works full time at the fitness center at Syracuse. So, really, what InclusiveU does, I think, is work with each student to figure out what are your passions, what are your goals, and how can we help you achieve that?

[00:12:36] Host Amber Smith: Well, I know you were the instructor, but did you learn anything from the InclusiveU students at SU, or from this teaching experience?

[00:12:44] Amelia Gabor: Oh, certainly, certainly. What I'd often ask them was, I would say, "tell me what I can do better if I was to be your doctor." And something they often said was, "when I go to the doctor, the doctor is very nice, and I like going to the doctor, but the doctor usually talks to my mom, or the doctor talks to my dad, and the doctor doesn't really talk to me."

And that's a really important lesson for me, and for my peers who are going to be doctors. When we think about how are we going to care for these patients with disabilities. On the one hand, there are certainly things that you need to do differently because people with disabilities, part of their disability, there might be some pathophysiologies or pathologies that present differently in people with disabilities than in the general population. So there are some things that a doctor might need to do differently. But, for the most part, there's not a lot you have to do differently.

Talking directly to the patient, listening to the patient, using empathy, trying to build a relationship. That's what's really important, right? And you can apply that to all patients, not just patients with disabilities.

[00:14:02] Host Amber Smith: Based on your experience, do you have any advice for non medical people who have contact with someone who has a disability?

[00:14:10] Amelia Gabor: Well, I guess for anyone, healthcare professional or not, interacting with somebody with a disability, I think it's really important to remember that these people are so much more than just their disability. Right? These are complex people just like you or me, and they have hopes and dreams and ambitions. And it's really important to see the person first before seeing the disability.

[00:14:37] Host Amber Smith: Well, Ms. Gabor, I really appreciate you making time for this interview. Thank you.

[00:14:41] Amelia Gabor: Thank you, Amber.

[00:14:43] Host Amber Smith: My guest has been medical student Amelia Gabor from Upstate Medical University Norton College of Medicine. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please tell a friend to listen too. And you can rate and review "The Informed Patient" podcast on Spotify, Apple, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.