Superheroes can have disabilities, too [PODCAST]

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“Today, more students are disclosing and speaking out about their disability and how their disability is an asset to their way of learning and what they can bring to their field. Across college campuses, more student-led organizations are forming to promote initiatives to identify and remove structural and systematic barriers to ensure equal access in all aspects of the educational experience. While aging clinicians may have had to live in the shadows with their disabilities, we have a new generation of aspiring clinicians who want to be “out” with their disability and share their experiences to bring more representation to their respective fields. It seems like a new generation of real superheroes is in the making.”

Marie Lusk is a social worker and disability specialist.

She shares her story and discusses her KevinMD article, “Superheroes can have disabilities, too.”

Reflect and earn 1.0 AMA PRA Category 1 CME for this episode.

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show we have Marie Lusk. She is a social worker and disability specialist, and she wrote the KevinMD article “Superheroes can have disabilities, too.” Marie, welcome to the show.

Marie Lusk: Thank you so much for having me.

Kevin Pho: We’ll get into your article a little bit, but first off, can you share your story and journey to where you are today?

Marie Lusk: Sure. I have an eclectic background, with experience and education. I’m currently the director of the Office of Student Accessibility Services at Rush University in Chicago. After my undergraduate, I worked as a sexual assault victim advocate, so I was in and out of the emergency rooms, courthouses, police departments, and schools, working with survivors. And I always knew I wanted to go on for an advanced degree, so I found the social work degree fit me best. With that degree, you can focus in on education and clinical settings, so I focused in on those areas, and I had multiple opportunities for employment to kind of fit my personality.

So I continued working as an advocate during graduate school, and found myself employed upon graduation as a school social worker. In that time as a school social worker, you work with individuals with disabilities and education plans, creating accommodations, working as part of a team with special education resource personnel, like occupational therapists, speech therapists, audiologists, and so on, along with the educators, obviously.

And then a position at a community health center presented itself, to become a medical social worker focusing in on high-risk expecting mothers and doing home visits all throughout the South Side of Chicago here. So again, just that opportunity to transition into a new area and work with individuals in their homes and in the medical center. And wanting to learn more about health care, I went back and got my MBA and health administration, to understand more of the administrative, behind-the-scenes work.

And then I was able to get into higher ed about 10 years ago as a disability advisor and crisis interventionist on a campus, and it was here that I really got my first experience of that medical world in higher ed. Our community college had a nursing program and a physical therapy assisting program, and so it’s there I learned about technical standards: What does a disability look like in a clinical setting versus a traditional classroom? So I was really able to kind of get some education in that area, which is not trained anywhere. This is not a degree that you can pursue anywhere, where you can go and become a disability accessibility specialist and get a bachelor’s in this. It’s something we all kind of come into from different areas.

And then Rush University presented an opportunity to open a whole new office just to work with the students with disabilities at a health science institution. So I’ve been there for five years. I’ve opened it, it’s grown so much, and it’s kind of led me to where I am today.

Kevin Pho: So walk us through a typical day, and maybe you could tell us about some of the typical cases that you see in your position at a higher education medical facility.

Marie Lusk: That’s a great question. Right now we’re in the second week of our spring semester, so every start of a new semester brings on intakes. So students who are now just starting their programs at Rush, or are continuing on into their next semester, who are now understanding that they need accommodation, contact my office. They have to disclose that they have a disability, and that could be a psychological disability, it could be a chronic health condition, mobility, and so on, and that disability rises to a level where it creates a barrier in their education.

So right now, just yesterday I had five, and I have about six more intakes today, where I will be speaking with students across our four colleges. We have nursing, medicine, health sciences, and the graduate college, which is research-based programs. So to be able to have these conversations with the students, I have to know about all of our 26 to 28 programs that we have at Rush. So I’ll have a medical student, then I’ll have a nurse practitioner student, then I’ll have a physician assistant student, audiology, and so on. So I have to understand their program, the academic rigors, and their technical standards, and discuss with them and review their diagnostic documentation, to say, “Here’s my disability. OK, this is where I was diagnosed, here’s my history, here’s my treatment plan.”

And then we talk about: What does that disability look like in your training? And you remember from your training, it’s not just in a classroom. Our students are in research labs and clinical labs. They’re in simulation, they’re in surgical suites, they’re in schools, they’re all over hospitals and community health centers. So what does it look like? So I have to not just engage the student. We refer to it as that interactive process, of working with our faculty, our clinical teams, our preceptors, site directors, and educators, and saying, “OK, we have a student who’s going to require accommodations, and what does it look like specifically in your setting?”

What I write for a nursing student in a community health center may not be the same language I use for the same disability for a student going through their clerkship for surgery. So we have to be very mindful that it’s not one-size-fits-all. It is a very unique process that we go through with each of our students.

So right now I’m very heavy on intakes, and explaining what my office does, the supports I offer, and how to go through this process. But I also have to talk about the end. Even though we’re talking about the beginning, intaking you, onboarding you, I have to talk about what’s going to happen when you graduate. So we have to think about whether our medical student is going to be prepping for residency interviews. Are they going to just disclose their disability? What does that discussion look like? For their Step exams, there’s a whole process for obtaining accommodations, if you need that, for your board exams. And the same for my students in speech and language, and nursing, for their licensure boards.

I have to talk to them: “This is where we are today, but during this time that you’re a student, we’re going to need to make sure that we’re going along the way and ensuring that we have the right documentation, so when you’re ready and eligible to take that credentialing exam, you have everything ready, and all you have to do is apply, choose your dates, pay, and test.” So it’s a very comprehensive process that I’m going through with my students, and I have a lot of touch points, because in health science, we have to be mindful of how their curriculum changes. In medicine, it’s pre-clerkship and clerkship, so it’s very heavy on academic classroom labs and then in the field. But for other programs, it’s different. So I have to be mindful of how those transitions are, and where the students’ accommodations may need to be modified along the way.

Kevin Pho: And you talk more about this in your KevinMD article. It’s titled “Superheroes can have disabilities, too.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Marie Lusk: Sure. I already had a perception of anyone who wore a white coat as a superhero. I had a lot of health issues as a child. I was in and out of the emergency room a lot, so I already saw anyone with a white coat as a savior who could help. So it kind of started with that.

But my time working with students with disabilities also led me to talk to clinicians with disabilities, and what their process was coming up through the days when maybe the ADA didn’t even exist, or when accommodations were not something you ever discussed, or offices like mine were cloaked in secrecy. So I really wanted this article to highlight that there has been a shift, and we need to continue this shift, because there’s such a bias against individuals with disabilities in health care professions specifically.

I’ve had a clinician actually say to me, “Someone with a learning disability or ADHD could never get into, nor graduate, medical school.” And that’s a powerful statement. It stopped me in my tracks, and I said, “Wow, I really need to be mindful of where I’m at, and the type of education I’m going to need to provide to the people I am working with and encountering on a day-to-day basis.”

So with this article, I really wanted to bring information to people. Because even in my circle of friends, I just kind of sometimes say I’m a social worker, because it’s just easier than saying I’m the director of student accessibility services, because it’s an unknown area. It’s a very niche area. But we’re here and we exist, and thank goodness we exist, because we have so many individuals who are coming forward as having a disability and saying, “Well, I need to step off the unit to monitor my insulin levels. How do I do that when I’m on a rotation?”

So knowing that we have more and more students coming forward, we, the educators, have to be mindful of our bias. When we’re talking to our students, are we using the right language? Is our verbiage correct? Are we being inclusive in our practices? So that’s where the article kind of stems from, to say, this new generation of student.

And just in my five years, what I’ve seen: I would have students who refused to come to my office when I first started, for fear that people would know they worked with me, because they were so afraid of that stigma. Versus now, I have students, when I am on campus, because we’re kind of in a hybrid, still-remote world, who come by with their friends, their non-accommodated peers, because there should be no shame. There should be no fear. My office should be as normalized as a financial aid office, as our wellness office, as our registrar’s office. It’s another place you go for resources. So that’s what this was bringing light to.

And also shedding light on those who are in the field. You know, our Docs With Disabilities podcast, that’s put on by Dr. Peter Poullos out of Stanford and Dr. Lisa Meeks with Michigan: They have over 40 interviews of current doctors, MDs, DOs, residents, and students who are going through their training, sharing their experiences. And other coalitions, like for the health science and medicine and education, and the Association of Higher Education Disability, just highlighting that there are entities that exist that can provide training, that can provide information to faculty, to staff, to students, people who are related to the health care field. We have it. We’re training, we’re researching, we’re publishing, we’re talking about this, because we need to ensure that students have that equitable experience in their health care education.

Kevin Pho: Can you tell us a story or give us an example of some of the accommodations that a higher education medical facility can give to students in residence?

Marie Lusk: Absolutely. It’s a great question. A very common one is for students who have diabetes. They approach my office and say, “You know, when I was in undergrad or in high school, I just would monitor as needed.” But when you’re in a health education program, we have to be mindful of a few things. Where are you in your training? Are you on a unit? Are you in a classroom? Are you in a lab? What type of technology do you have?

And now we have students who have the CGM monitors that are linked up to their cell phones. So if you walk into a classroom where a teacher says, “No tech out, everything away,” right there we have to say, “But pause. We have a student’s medical device that is connected to their cell phone.” So we have to write an accommodation so their cell phone can be on them, and that they are going to be actively looking at it throughout their day. And so that language would also be translated into the clinical setting: The student utilizes a CGM monitor linked up to their cell phone. They will be utilizing that, referencing that, looking at it during the day. So it’s not to be understood that the student is on their phone scrolling Twitter. They’re monitoring their health. So we want to be mindful of those professional areas of their education. So that’s one.

Some of our students have severe migraines. With COVID, and now shifting to 100 percent remote, early on I had students flooding my office, asking, “Can I please have permission to go off camera while we’re learning? Because I cannot look at the screen for 12 hours a day. It’s detrimental to my health.” So in talking with my faculty and colleagues, I just kind of put a statement out there, to say, “Is it required that students have to be on camera all the time, or is it an engagement piece?” Absolutely, we want to see you on camera. We want to see that you’re paying attention. But there are also times where a student needs to go off camera. What if they’re a nursing mother, right, or pumping? They need to turn the camera off and have privacy. But also, for our students with migraines, it was a very simplistic accommodation to say the student’s going to have to turn off their screen and go off camera, just to have a sensory break.

Again, we have students in the clinical setting who, because of their medication schedule, if they’re in a surgical rotation, well, when you scrub in for surgery, that could be anywhere from two hours to eight hours. It depends. So if a student knows that they’re on that rotation, but, “Hey, I know that three hours into this, I’m going to have to scrub out,” then you scrub out. And so we’ll write that accommodation letter, that the student will have to scrub out to attend to personal needs, and then will scrub back in and re-engage in the procedure. But again, by having conversations with the clinical staff, I got to learn, “OK, this is when it’s going to be content-rich. So if the student can really be here for this piece, this part is really ideal.”

If they need to step away for weekly mental health appointments, that’s another big increase that we’ve had. Our students are having weekly appointments to maintain their mental health and wellness, which is what we want. We need them taking care of themselves so they can take care of us in the future. So how does that look on an accommodation? Simple: student permitted weekly leave from clerkship, or clinical, or fill in the blank for that student’s program, to attend to medical appointments.

And then I usually give language on how a student should communicate with their preceptor or their supervisor or their resident, to let them know, “Oh, today’s the day I’m going to be leaving at one o’clock to attend to an appointment.” Are you going to be returning to the unit or not, or is that where your day ends? So those are conversations I coach the students up on, and also talk to my clinical staff on as well.

So those are just a few. But then we have the temporary accommodations. We live in areas where there’s ice. People slip and fall, and we have broken ankles, or wrists from catching themselves. So we have to create those temporary accommodations that may have a lifting restriction. And it could be for assistive technology: use of a scribe, or use of an assistive technology like the adaptive stethoscope for those who are deaf and hard of hearing. So there are a lot of different accommodations that can be out there.

Kevin Pho: So I want to talk more about the behavioral health issues that you see in your office, because I talked to a lot of medical students. And of course, burnout, depression, suicidal ideation, these are all issues that traditionally were stigmatized, and now I’m certainly encouraging more of that conversation, more of bringing that out in the open. So talk about some of the stories that you see as it relates to medical students and some of the behavioral issues that they face.

Marie Lusk: Right. I have several students who’ve had to take a leave of absence because at the start of medical school, they didn’t have the support they needed in place, because they didn’t know what they needed. We have students who come from cultures or religions that do not discuss or accept mental health or behavioral health diagnoses. So we have to see where the student is first, in their acceptance of their diagnosis and treatment, and what support they have at home or in their personal lives.

So I have seen an uptick in students who are now just being diagnosed when they get to medical school, because in medical school we require them to have health insurance, right? So our students have the insurance through Rush University, and this might be the first time they’ve had the freedom, that autonomy, to go and talk to someone. Because they always suffered, but they were told, “Well, just pull yourself by your bootstraps.” That was the big one. Or, “Just grin and bear it. What do you think the real world is going to be like?” These are stories that our students are hearing, right? And this is what we need to stop.

So when I have a student who finally gets that diagnosis because they now have the access to health care, sometimes they’ve gotten to a point, because it was so hard to transition from undergraduate to this medical training. Many of them have moved across the country or far away from their family for the first time, and that alone is a transition. Lockdown was very hard on many of our students, who come from being a very social group to now being home and doing all their learning on a computer.

So we have had students that have had to step away for leaves of absence, because the time they need to take care of themselves would have taken away from their studies, and they wouldn’t have been able to produce the work that we know they’re capable of, because they clearly got accepted. So they met all the academic rigors and all the prerequisites and standards we set on them. But they get here, and there may not be the right adjustment, there may not be the support in place, or because they felt isolated.

So we’re really trying to amp up our resources with our Center for Clinical Wellness. Our medical school has their own intensive services that just support our students, to ensure that they have the resources, and that it’s a safe place to say, “I need help.”

Sometimes medical school can be the first time a student fails something, that they’re not the best of the best at something, for the first time. And that can set them down a path that they’ve never experienced, which is failure. They’ve always excelled, and now you get to a place you’ve never been to. You don’t know how this training is, because medical education is very different from a traditional intro to history or intro to psychology. This is a whole new way of learning. You’re in a cadaver lab, you’re in a skills lab, you have to utilize personality, you have to take cues from your standardized patients. These are all things you have to learn, and if you don’t have that right support built in, it can lead to a disaster.

And so what we’re trying to do is ensure students, from when they get accepted, that their acceptance letter lists right away, for us at Rush, “Here’s the support.” So if I have students, I have to talk about continuity of care: “Oh, you’re in California, but you’re moving to Chicago. OK, who’s your treatment team? Now you need to make sure you have enough prescriptions to cover you while you move here and engage someone else here, now that your Rush insurance picks up.”

So we have to kind of go through these discussions with our students, because as they want to be health care professionals, they don’t know all the ins and outs that we know, because of our work or our personal experiences. So it’s really important that we’re talking to the students, and that they know that it’s not going to be seen as a sign of weakness, or that they’re not capable. No, there are clinicians who are depressed, who have anxiety, who are bipolar, who are on medication, who are getting treatment weekly, but we don’t talk about it. It’s not out there. It’s more about, “Oh, you have a chronic health condition.” That’s more acceptable than someone who says, “I have general anxiety disorder, and I am a DO,” or, “I am an MD.”

Even within your own world, you know, I’m in the social work field, we’re different, but MDs and DOs have their own biases within your own field, and you know that. But we need to be training up this. We actually have to do the training. We, the older generation, have to really retune the way we think, and even how we speak. Because if we say something that could be seen as flippant or disrespectful to a community, but that’s the way we were trained, and that was the verbiage that was used when we were coming up, we can’t do that anymore. And we can’t fall back on “Well, in my day.” We cannot fall back on that. And we can’t use the words in the phrase, “Well, in the real world, you’re not going to get an accommodation.” That’s not true. That is not true.

We have an employee resource group at Rush University for our employees with disabilities. We have a forum for individuals to come forward and talk about “I am working in this field, and I have this disability.” So we’re trying to bridge these gaps in our own institution. And we’re small. We are a smaller institution versus University of Michigan or UCLA. We’re small, but we’re mighty, and we’re doing really good work. And we’re pairing active clinicians who have a disability with students who are registered with my office with the same disability.

And the leading disability I work with is psychological. By far, psychological is first, chronic health condition is second, then we get into learning disabilities. And so it’s very much a topic of conversation: wellness, well-being, taking care of yourself. If you don’t advocate for yourself, and if you don’t take care of yourself, what good will you do for us as an active clinician down the road? How will you advocate for your patients?

So I like to tell my students, this is a great way for you to train yourself up on your vocabulary, on your verbiage, and on how you’re going to talk about this. Are you going to share your stories with your patients to try to make a connection? Is that something you want to do, without taking the focus away from the patient? Is it a way to engage them? If we have a person who utilizes a wheelchair and sees other clinicians at their health care center utilizing wheelchairs or mobility devices, are they going to feel like they’re more represented? Absolutely.

And that was another piece of this article, that there isn’t enough representation out there. But that’s also because a lot of our disabilities are invisible. We don’t wear signs that say, “I have X, Y, and Z.” There are only certain things. If we see someone with a cochlear implant, or using a cane, or using a walker, we can see something. We can see a cast, but we can’t see the pain someone has or the trauma they’ve survived.

So we have an uptick in PTSD and general anxiety disorder, and it’s so great that at many of our universities, we can say, “We have a health center, we have a wellness center, we have a counseling department that we can link you up with that’s free and available to you,” for us, for our students, and even at Rush, for our residents as well. So I think it’s great that we continue to have these conversations.

Kevin Pho: We’re talking to Marie Lusk. She’s a social worker and disability specialist, and she wrote the KevinMD article “Superheroes can have disabilities, too.” Marie, what are some of your take-home messages that you want to leave with the KevinMD audience?

Marie Lusk: For those of you who hold faculty appointments, who are in any position of training someone going through their health education: Find your disability resource person. Get to know them. At least know their name, know how to contact them, and see if there’s anything you can do to enhance your practices, so that you’re utilizing the best practices, instituting best practices in your education, so we can provide an equitable educational experience for all of our students.

Kevin Pho: Marie, thank you so much for sharing your time and insight, and thanks again for being on the show.

Marie Lusk: Thank you.

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