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Fighting Ableism: What Do You Need?

Learning Objectives
1. Describe challenges faced by health care professionals with hearing loss that were amplified during the COVID-19 pandemic
2. Explain why accommodations that support patient-provider communication for those with hearing loss are important
3. Identify accommodations that can support health care professionals with hearing loss
4. Recognize ways to improve inclusivity for individuals with hearing loss in health care settings
0.5 Credit CME

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Audio Transcript

Intro: Welcome to Stories of Care, a podcast from the American Medical Association and CDC's Project Firstline. In this episode, we are joined by Dr Joanna Turner Bisgrove, a Family Medicine physician, Member of the American Medical Association Council on Science and Public Health and anti-ableism advocate. Dr Bisgrove outlines her experience as a physician with hearing impairment in a pandemic that required everyone to wear masks, limiting her ability to read lips and hear her patients. She discusses her struggles and triumphs, and shares her ultimate message of how physicians can truly be inclusive while not sacrificing the safety of patients and themselves.

To earn CME for listening, visit amafirstlinestories.org and click on the title of this episode to complete the quiz.

Megan Srinivas, MD, MPH: Thank you so much Dr Bisgrove, for joining us today. It is such a pleasure to have you on to talk about some of the things that you were educating the public about during, during the height of the pandemic.

Joanna Bisgrove, MD: Thank you so much, Dr Srinivas. And absolutely. I've been working quite a bit, first in Wisconsin, and now back in my hometown of Chicago.

Srinivas: So, let's talk about what happened when the pandemic first started. We started seeing masks everywhere. And for our listeners who might not know your personal background, can you talk a little bit about why you are so active in the disability space?

Bisgrove: Okay, so I was born with a mild hearing loss and that has gotten worse over time, and I talk about this quite a bit.

People ask, are like, is this okay to ask about? I'm like, yeah, this is my life story and part of who I am. But I was born with a mild hearing loss in my left ear, and then I had, I contracted viral meningitis when I was about nine. The antibiotics that they were using were known to be ototoxic or possibly like they could harm the ears.

Now, why did they use antibiotics on me if I had viral meningitis? Because early, when they, when I first presented, they weren't sure, clinically speaking, I looked like I might have bacterial meningitis. And so, they did a spinal tap. Until the results of the spinal tap came back, they kept me on these antibiotics and then they were able to take them away. But they believed that actually some of the hearing, the further hearing loss that I got from the, from meningitis was actually from the antibiotics and I was already being followed by an audiologist.

And at that point, and prior to meningitis, it was questionable whether I would need a hearing aid. After the meningitis, I went back to school, and interestingly enough, there, we had some standardized tests, which I had done well on previously. That year, they switched how the testing was done, and I didn't hear the new instruction. So suddenly I went from doing really well on the standardized test to like nearly failing them. And they had thought maybe there'd been some, that my teacher thought maybe there'd been some damage to my brain. And, but one of the teachers decided to have me redo the test just to be sure. And as she is explaining the test, the new test rules to me one-on-one, I said, “oh, I didn't know that.”

And it clicked in her head that my hearing had gotten worse. So, they had me retake the test. My scores came back the same as, same as they were before I got sick. And they took the test results to my parents and said, we think her hearing is, her hearing has gotten worse. Sure enough, it did. I got hearing aids.

I got a hearing aid. In my, in my left ear. For those who are native Chicagoans, like I am. My hearing, I got my hearing aid the day after the Chicago Bears won the Super Bowl in 1986.

Srinivas: So, you'll never forget that day either.

Bisgrove: No, because we got the hearing aid and then we drove down the, I think it was LaSalle Street is where they were having the parade.

We drove down like right before the parade, it was like they're having a parade for me, for my hearing aid. It was really cool.

Srinivas: That's awesome. And kudos to really great teachers who want to take, who take the time and notice these things.

Bisgrove: Mrs. Gurney, to this day, like, she was pivotal. Like I had some really good elementary school teachers, but the fact that Mrs. Gurney was just literally the, it's still like the aha moment in her eyes when I like, oh, I didn't know that. And she was like, oh, the hearing.

Srinivas: You already had a little bit of mild hearing loss, but it wasn't enough to need a hearing aid. So, it was really, that's what pushed you over. So, from there, having a new disability that you were managing and then growing up within that world, you became really this activist.

And I've always known, since I've known you, you've always been a huge activist, wanting to educate people about how to treat people who are facing disabilities and how to better be inclusive. And then the pandemic hit. And masks were everywhere. We wanted them to be as much everywhere as possible for, to protect people. And in the spaces they were in, we're now facing new hurdles for people who are facing challenges with hearing. Can you talk about what some of the things were that were happening around the whole masking situation?

Bisgrove: Well, immediately we're putting on masks. And also we started communicating through telehealth. And the telehealth piece for me wasn't as hard because I have headphones. Right now, I've got my hearing aids in, we're communicating via computer, and the volume is up. So, through the years, I started with the one hearing aid on my left ear, but over time, I've also had to rely on my right ear a lot more.

In those very early days of the pandemic was, most of the work we did was telemedicine and so we would be in the office, we'd have masks on to communicate when we were with each other, but we were very separated out. So, it wasn't. The mask issue for me in the very, very beginning wasn't that big a deal because I was mainly communicating with patients via telehealth.

And so, my hearing aids were Bluetooth, I was fine. But then as more, as people started coming back into the office more and then we are wearing masks more. It started to be a challenge. Now, one of the things that I had was a scribe, and so she really helped, because she could hear people when I couldn't.

There were literally patients where, but behind a mask, they would talk, and their voices would be soft enough and their facial expressions would be muted enough that I wouldn't even know they were speaking. So, I'm just carrying on, not even realizing they're talking, and they think I'm interrupting them and being rude, and it's my scribe who hears them and goes, “Can you stop? She didn't hear you.” It was really strange.

Srinivas: She really had to take on an active role to communicate to people.

Bisgrove: She became my interpreter.

Srinivas: For you too, just from knowing you for so long, one of the things that you often do, even besides facial expressions, is you read lips a lot, don't you?

Bisgrove: Yes, I do. I'm trained.

Srinivas: So, I, but with masks in place, I mean you're talking about the facial expressions are one part of it, which is such. As we know in medicine, 85 to 90% of what you're going to get from messaging and communication is nonverbal. So that's a huge piece of it.

But really also, even the verbal aspect, because you read lips so well and rely on that for communication. With traditional masks, that had to have gone outside, out the window.

Bisgrove: Pretty much. Yeah. And it was really hard. And I'm also trying to, and we had already come up against a barrier cause you talk about there's like the patient's satisfaction scores. Leading up to that point, this is pre-pandemic, leading up to that point, because I had to look at the computer to type and the patient's talking. I, even though I was doing everything, clinically speaking, and my patient care skills were great, my patient satisfaction scores always kept lagging below.

And when we read the comments, it was always not paying attention, ignoring, and I'm going, I'm always paying attention. And it finally, and it was weird because it was like, 75% wonderful and 25% not paying attention, and I'm like, what the heck? We finally figured out if I was looking at the computer and the patient said something and I didn't turn to them, they thought I was ignoring them.

Even though we told every single last patient, “She has a hearing loss, she needs to look at you when you're talking.” Okay. They would forget. And so, and it became this thing, and finally after about eight years of being beat over the head by my original employer over this, about it, was because I did everything they told me to in all the patient satisfaction, like, all the trainings, everything, and they kept telling me, “There's something wrong with you” and I'm going, I'm doing everything. We finally figured out the issue wasn't anything I was doing, it was my hearing. And so, I finally, that was eight years, and then it took another year of arguing and fighting to get a scribe as an ADA accommodation. That was pre pandemic, so then, yes.

And then, yeah, it was a to-do. And then once the pandemic came, those big bulky [clear] masks became available probably about four months in. And then, so the organization got some, but they got so few and I, we had to fight to get any of them, and then we had to use them sparingly. And then it was for the patients, oh, they could choose to wear it.

It wasn't that it was, this is a need for the doctor to understand you. This is, you can wear it if you want to. And those --

Srinivas: Tell me, how did the masks first appear? Were you the one to say, “Hey, there are these masks out there that could help” or did somebody in your clinic discover them? How did you first come to see those?

Bisgrove: I found out about them, and I asked, “do we have, can we get these masks?” My clinic manager and I went actively searching. I was about to buy them myself, and I was told, you can't buy them, because we have to do all the purchasing. I was like, then purchase them. And there was hemming and hawing, and finally, we have some. After, this was months of fighting with the organization.

And then finally it's, “oh, we have some.” I was like, “can I have them please?” And then it was a battle, a constant battle.

Srinivas: And to describe to our listeners what we're talking about with these masks that were better for, for hearing challenge individuals, was these masks basically are the typical masks that you see.

But instead of having the blue where you would typically have your mouth covered, it's basically a clear plastic pane. And so, you can see everything.

Bisgrove: So, these original masks, what they, like, the earliest of these masks were these with a styro, a big sort of clunky styrofoam, two styrofoam ridges. One that went across your face at the top and one across your chin, and then a big piece of plastic.

So, they were open at the sides, so they didn't provide that much coverage, so patients didn't like them. That was the first thing. The second thing was because they were –

Srinivas: In a pandemic, when we're worried about infectious spread.

Bisgrove: Right, and so I was a little nervous about patients wearing them too. So that was the other piece.

The second, because I was like, it, for me, it was this constant back and forth of I'm exposing myself to greater risks in order to understand the patient. It's like I was constantly compromised. And we, I knew that there were other masks coming out that were better, but I couldn't get the organization to buy them.

Srinivas: Was it a huge cost differential or what was the justification?

Bisgrove: They never gave me one. They never gave me one. There is a cost differential, and they talked about that, but the, it wasn't enough to justify what was going on.

Srinivas: It should never justify, and –

Bisgrove: Also from an ADA, from an Americans with Disabilities Act compliance standpoint, it shouldn't have mattered.

Srinivas: Exactly. I mean that's the issue is, you're a physician who needs certain accommodations in order to stay safe during your job, during a pandemic. That should never be. It's never justified by cost, but just to even think that's what is a predominant issue over keeping you safe, keeping the patient safe. And then honestly, it's a patient care issue, too. If the patient is unable to communicate with you in a way that makes you understand everything that's going on, that patient's health could be at risk as well

And when you transitioned, the new place, how was their perception of what they could do to help you through this.

Bisgrove: What do you need? What do you need? And in fact, the new place had the same masks and I went, “these masks are hard for patients to wear. They don't provide good coverage.”

And I immediately said, “there's a mask that works better” and boom, they had them. And the biggest issue was making sure that we, and there was a big kerfluffle of making sure we had the masks that I needed and that were the appropriate mask and safe and comfortable for the patients to wear by the day I started.

Srinivas: And the day that you started, how did it work at your new office? Was the nurse always making sure, the front desk person, always making sure that the patient had the right mask before they saw you?

Bisgrove: Yep.

Srinivas: It wasn't even a question.

Bisgrove: If the front desk nurse forgets, then I would say, “oh, hey, hang on, let me get it for you.” And the patient would go, “okay.” And the patients know, the patients are told, I have a, I have a hearing loss. They also know, they have, the other thing is that my current organization doesn't do in-person scribes. So, I have a virtual scribe, which I'm cool with.

Srinivas: What percentage, I don't know if you know this, but what percentage of people who working in health care would benefit from things like having a clear mask or accommodations that would help them in that regard?

Bisgrove: We know that up to 3% of physicians have, identify as having disabilities.

That's who identify, who self-identify. The problem is that there's such a, in medicine, there's such, there's still such a stigma with having a disability that there are a lot of people probably who don't speak up. And that we know we need to change the paradigm as far as how disability is looked at. There's something called, there's something called the medical model of disability and the social model of disability.

The medical model of disability, like every disability at the diag, like a diagnosis, something wrong with you. What do you do with, like, how do we treat this? Whereas the social model of disability looks at disability as an, looks at the diagnosis as an impairment, but the actual disability is the barrier in society.

And so, it shifts how you think about it. So, masks. So, my impairment is my hearing loss, but the disability is what keeps me from doing things in society. So, my hearing impairment doesn't become a disability unless I'm unable to do my job. Well with pandemic, I had the clear masks. I have the scribe so that while this is recording, I look at the patient.

I miss very little. And not only that, I have my amplified stethoscope. I have all these things. I, when I'm working with patients on tele, with telehealth, I've either Bluetoothed my hearing aids or sometimes I will have my headsets. So, I have all the different tools needed so my hearing loss is an impairment.

Srinivas: So, we're sitting here talking about 3% of physicians identify as having disabilities. You're a huge advocate for people with disabilities, regardless of whether they're patients or health care workers, wherever they might be in the health care system. But what about our patients who don't have an advocate like you, who are coming in?

And we see a lot of patients with hearing loss and so many physicians, so many health care practitioners haven't even thought about, is my patient hearing me adequately with this mask? What can you say about that whole conundrum and how this kind of flips that notion?

Bisgrove: There's a huge issue, and this has talked, this has been talked about a lot in the New York Times more recently, but there's been studies about this because patients with disabilities are often, they've been often treated like they're a problem and they're viewed as being a problem. You get a doctor that actually sees you, there's a fear that if you make a big deal about your disability, that they're going to, that they're going to then not want to see you as a patient.

So, if a doctor's talking, you can't understand them. Some patients may be very hesitant to speak up and go, “Hey, I can't hear you.” And so, it's important for doctors to speak clearly, not mumble. And one of the things that becomes important is something we learn, I think that, I know that we teach very specifically in family medicine, I'm a family physician, but we teach our residents in family medicine that I'm fairly certain is taught in multiple specialty programs is the teach-back method. Really simple way to make sure your patients are understanding what you're talking about is to do the teach-back method. Have them say back to you what you said, to make sure that they're understanding you.

You should, we all should be doing that anyway, just to make sure they understood. But that's a really good way to catch whether they heard you properly. Because if they heard you properly, look, they'll bring it back to you.

If they're hesitant, then it's, then it may be that they didn't hear you or they didn't understand. Then it's, why don't we like, do you want to go over it again or talk about it a different way? ‘cause you don't want to put 'em on the spot ‘cause then it's uh-oh. It's like I have to reveal I didn't hear anything.

Srinivas: Yeah, I was always taught and I went to a primary care heavy specialty as well, so internal medicine. And I was in a program that was very social justice focused. So, we were always taught, you never want to embarrass anybody. And always take ownership and say, “did I explain that correctly?”

Bisgrove: Yep. Anything you need me to explain, redo, want to do this a different way.

I did a Schweitzer Fellowship my second year of med school, and the Schweitzer Fellowship was very much focused on working with the deaf community communication. And one of the things when, I still remember when I gave, ‘cause we all had to give a big presentation at the end of the fellowship.

And I talked about 80% of the history, of the diagnosis comes from history and exam. And I said, and if you cannot communicate properly with the patient, you're lost. Like what is the point of what you're doing? It's just, and. I learned a lot from the Schweitzer Fellowship just because at that point that was in, I did the fellowship in 2002, 2001 to 2002.

At that point, interpreters weren't very well adapt, adopted, and accepted yet. So, part of my fellowship was teaching medical students how to properly use interpreters. And then the other part was working in clinics with deaf patients and working with them and communicating with them.

Srinivas: And so, throughout the last few years, even in the setting of pre-pandemic times, we were using especially in the infectious disease realm, we were using masks a lot with our patients just because we are going into rooms with a lot of contagious diseases and we want to keep everybody safe. Especially as we're working on diagnoses.

And now after the height of the pandemic, there are still many places where we're using masks, whether it's for COVID or for other respiratory illnesses. Have you seen a change in the way that people are approaching mask-wearing that is more inclusive, or have you seen any impact in that regard, in that conversation happening?

Bisgrove: I think in my sphere, just because like you said, I'm an advocate, so any sphere of influence I walk into, there's either going to be pushback or it's going to be accepted. I already told you about the pushback I got at the old job. Where I am now is, there's acceptance because I purposely walked in, I purposely came into a place where it would be accepted.

One of our medical assistants here was just telling me she left right before the podcast started and I told her what we were doing and she said with her wearing the mask, the patients are really appreciative.

They're like, “I can understand you. This is great.” So. She just, she started wearing the mask for me, but then kept wearing them because of the patients.

Srinivas: That's wonderful. That's really wonderful. And outside of your immediate sphere, what are you seeing as far as patterns in embracing this? I have to say in, even in my own neck of the woods, I've seen places that that don't necessarily have a disability advocate that switched to more of these clear masks that are more accessible about midway through the height of the pandemic. And so it was becoming a conversation that was spreading. Have you seen that elsewhere too?

Bisgrove: I have throughout our medical center, ‘cause we do have good communication in our medical center. And because our medical center is pretty active in inclusion of all sorts, disability, racial equity, LGBTQ.

Srinivas: That's really great. If you were to leave our physician listeners, our patients with one message that you want to make sure people hear loud and clear after everything that you have seen personally, but also just as an advocate and as a physician, what would you want to say?

Bisgrove: Always ask, “what do you need?” It's not even just about, so when we're thinking about infectious disease, we're thinking about the pandemic and what may come next. For me, it's about masks, but we have our patients that are immunocompromised.

We have our patients who are in wheelchairs who can't get through, still can't get through doors properly. The disability community is so varied. And so the AMA starting to move forward and listening to physicians with disabilities and others who want others, health care providers with disabilities so that we can be independent on our own, is huge. Because we talk about the importance of having physicians who look like their patients. 26% of American adults have a disability. 3% of American physicians have a disability. When we talk about physicians, the gap between physicians who represent or are like their patients, there's no wider gap than physicians with disabilities and patients with disabilities. And so being able to recognize that and be able to allow physicians to move forward and asking your fellow physicians “What do you need?” And then also asking patients, “What do you need?”

And just truly listening rather than just blowing 'em off and going, “You don't belong.” That's probably the most important thing here. Not just masks, just with all sorts of different measures. Listen to us, we have a hashtag: “Nothing about us without us.” And really a lot of what that is just listen to what we have to say.

We know. We want to be involved, we want to be included, we want to participate, we want to help change the landscape.

Srinivas: I love that. What do you need? I love that. Those are the perfect words to wrap up this extremely enlightening and insightful conversation that you've provided us today. So, thank you so much for joining us and I hope many of us change our practice and remember to ask, “what do you need?”

Thank you so much, Dr Bisgrove.

Bisgrove: Thank you, Dr Srinivas. It's wonderful to see you.

Srinivas: You too.

Stories of Care is a publication of the AMA and CDC's Project Firstline. Project Firstline is a national infection control training collaborative, working to provide all health care professionals with the foundational infection control knowledge they need and deserve to protect themselves, their patients, their coworkers, and their communities. For more information, trainings and other infection control resources, visit CDC.gov/projectfirstline and AMAfirstline.org.

Audio Information

CME Disclosure Statement: Unless noted, all individuals in control of content reported no relevant financial relationships.

If applicable, all relevant financial relationships have been mitigated.

AMA CME Accreditation Information

Credit Designation Statement: The American Medical Association designates this Enduring Material activity for a maximum of 0.50  AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to:

  • 0.50 Medical Knowledge MOC points in the American Board of Internal Medicine's (ABIM) Maintenance of Certification (MOC) program;;
  • 0.50 Self-Assessment points in the American Board of Otolaryngology – Head and Neck Surgery’s (ABOHNS) Continuing Certification program;
  • 0.50 MOC points in the American Board of Pediatrics’ (ABP) Maintenance of Certification (MOC) program;
  • 0.50 Lifelong Learning points in the American Board of Pathology’s (ABPath) Continuing Certification program; and
  • 0.50 credit toward the CME [and Self-Assessment requirements] of the American Board of Surgery’s Continuous Certification program

It is the CME activity provider's responsibility to submit participant completion information to ACCME for the purpose of granting MOC credit.


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