Dr. Pratesi discusses her path to becoming an audiologist including her diagnosis, living with and without accommodations and assistive devices, working with disability resources in college, helping others request accommodations in the workplace and finding a way to engage with her passion of theatre and music as a person with hearing loss.
Dr. Laura Pratesi, AuD, CCC-A, FAAA
Episode 3, Transcript
DocsWithDisabilities Podcast #3
Dr. Laura Pratesi
Lisa Meeks, PhD, host
Laura Pratesi, MD, interviewee
Introduction: Lisa Meeks
Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast.
Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing researchers and policy makers that ensure medicine remains an equal opportunity profession.
In Episode 3 of the Do With Disabilities podcast I had the incredible opportunity to speak with Dr. Laura Pratesi, an audiologist in Orlando, Florida. I learned about Laura after reading an article about her in the Orlando Sentinel. Laura’s unique experiences as a person with hearing loss, and her lived experiences, drive her passion for audiology and the care of her patients. Let’s listen or read along as Laura recounts being diagnosed and learning about her disability.
I was diagnosed with a hearing loss when I was five years old. I failed the screening going into kindergarten and got referred to an ENT and to an audiologist. It was a result of an inherited birth defect. I have what's called a bilateral Mondini malformation. And then I also have enlarged vestibular aqueduct or EVA. And EVA is one of the most common reasons why children are born with hearing loss.
Even though I was diagnosed at the age of five, I actually didn't get a hearing aid until I was in college. Some of my classmates at Auburn actually fit me with my first hearing aid. And it changed my life, and I ended up changing my major from being a theater and opera major into audiology. I decided I wanted to go into this field to help people who are like me because for years I had fallen through the cracks.
That's what got me interested in audiology in the first place was my personal experience and growing up. And I really did struggle for years and I didn't realize how much I was compensating until suddenly I didn't have to work so hard to hear and to listen. My hearing loss is actually a progressive loss. So what started off as a hearing loss in one ear, now actually I have hearing loss in both. And so I am now a bilateral hearing aid user and I might possibly be a cochlear implant recipient someday.
I was lucky in the one aspect that I know so much about the hearing and balance system being an audiologist, but it was also difficult because I know exactly what the limitations of treatment and research are. I have found peace. There's so many things in our lives that are beyond our control. But what I can control is how I react to things. I think it has made me a better doctor ultimately because I really truly get what my patients are going through.
I think that it has endowed me with this empathy and understanding that education can't teach. If my experience can help or educate or bring comfort to somebody else who's walking the same path, then it's been worth it.
There’s a lot of misperception and stigma about hearing loss and the approaches to mitigating the impact of hearing loss. Let’s listen or read along as Dr. Pratesi discusses these topics and how “seeing herself” in textbooks informed her decision to become an audiologist.
I run into patients all the time who are shocked to find that I have hearing loss and they say, "You're so young". They really truly see hearing loss as something that just affects the geriatric population when that's not the case at all.
And I think as someone with hearing loss and as someone in the field of audiology, it's my job to help educate the general public so that they're making the best, most well informed decisions about their hearing and balance health care possible.
I had been to see audiologists, but I hadn't really thought about it as a career. But when I started learning about hearing loss and how it affects people, I saw so much of myself in the textbook. I mean reading about kids and the kinds of struggles they have in school and auditory fatigue and these different things. I was reading about my childhood. I was the kid that preferred to sit and read a book versus try to socialize. I mean, we had assigned seats and my left ear, which is my bad side was facing everybody. It was extremely difficult to try to communicate in that environment. And I didn't have a hearing aid or any type of assistance at the time. So they told my mother I read too much.
And of course I got labeled as being kind of a dreamer or distracted or got in trouble for not paying attention when really it was, I couldn't hear. So when I'm reading about this in the textbooks and in college, I was like, oh my gosh, that's, that's me. And that was really kind of the moment when the light bulb sort of went off and I said, I need to go into this because I fell through the cracks and I need to make sure nobody else does. So I switched my major and I signed up for the doctoral program and the rest is history. I found my calling a little late, but it was definitely the path for me, and I'm so glad when I look back, I know that I've ended up exactly where I'm supposed to be.
Dr. Pratesi reflects back on her educational experiences, how using accommodations changed her academic pathway and opportunities, and how full access to materials improved not only the quality of her academic life but also of her personal life.
When I actually started applying for colleges, I got a little nervous about the fact that you could have 300 students in a lecture hall. And I had always been in the mainstream classrooms and I never really had any accommodations in middle or high school. But, I thought I might need some help when I went to college. And so that's when I looked up the Students with Disabilities Department at Auburn. They were really the ones that made me aware that I can get help. I don't have to concentrate so hard.
And kind of introduced me to the fact that I could have a note taker or I could request materials be written or I could request that videos have captioning. And, that was where I learned about CART, which is the Communication Access, Real Time Translation. So the professor wears a microphone and there's a person on the other end who's typing up what they're saying in real time. And I was like, this exists? This is amazing! Because I didn't know what to ask for. I didn't know where to find those resources. And so they were really kind of the ones that pointed me in the right direction. And then of course when I got my own individual hearing aid and it made such a difference to me. Once I got into the doctor of audiology program and I was fitting children with FM systems and remote microphones and all these different technologies, I started thinking, oh my gosh, why haven't I been using that? And then going to the movie theaters and realizing you can have caption devices, and so now I look for those things wherever I go.
When I got to the university, they were able to get me so plugged in. Even when they made me aware that these resources existed, I didn't take advantage of a lot of them. And looking back now I see I should have. I almost didn't ignore it but didn't realize how much easier it could make my life because I thought, well, I've never had this before. Why do I need it now? It could have just changed my experience at a lot earlier date. And so I think I see that a lot with young adults who have had hearing loss and they come into my clinic and they're not wanting to ask for accommodations at work. They're not wanting to go to the HR department and let them know I need a captioned phone or an amplified phone. They're almost afraid to ask for the resources.
Full access for a professional career must include more than just the educational and training environments. So much of the relationship building and collaboration occurs at conferences, and within the conversations that happen spontaneously between meetings. Success is also impacted by mentorship and sponsorship, especially for people with disabilities. Of course, communication and access to communication impacts all of the above as Dr. Pratesi discusses.
So much of what can make you successful is being open to opportunities and being at the right place at the right time and making the right connections and networking. And that's very hard to do if you're not having 100% access to communication. I want to tear down these barriers in communication. We had this amazing article written up in the Orlando Sentinel and there was a video interview that went with it and I had to contact them afterwards and I said, “Could you maybe caption the video for me? Cause we're talking about hearing loss and accessibility and the video is not captioned.” And I was like, “So since we're talking about the hard of hearing and deaf community, we might want to do that.” You know, and then it's, "Oh my gosh, of course. Absolutely. Let's do that. And we're going to work really hard to make sure that we're doing that on all of our videos moving forward." I think people are willing to accommodate and meet you halfway, but we've got to ask, we've got to bring it to their attention.
In my experience, people don't care if I wear hearing aids. People don't care if I wear glasses. What they care is if I seem like I'm not listening. The hardest thing about hearing loss is it destroys communication. It creates these barriers. And a lot of times not physically being able to hear looks like not listening. And people think if you're not listening, you don't care about them. What they have to say is not important. You weren't making an effort to listen to them. And I have to tell them, “No, it's, I can't physically hear.” And it's hard to be a good listener when you can't physically hear. So I've got to get as much access to sound as I can. But then here are the things you can do to communicate better with me. You know, slow down. Face me when you're talking to me. Get closer. Get my attention before you start saying something, so that I can focus.
Dr. Pratesi reflects on her experiences with disability professionals in an educational setting, and she discusses the positive aspects of sharing on social media and connecting with other individuals with similar disabilities .
For someone who's wanting to go into a health science field, contacting the students with disabilities office was so helpful for me in getting accommodations and getting me plugged in and getting me the resources that I need. When patients come to me and they're needing help with something, I try to get them plugged into the local and national organizations that can help, like the Department of Vocational Rehab, or for hearing loss in particular, there's the Lions Lighthouse Foundation or the Sertoma club.
I have found Facebook to be very, very helpful. I found the Association of Audiologists with Hearing Loss on Facebook. And so everybody in that group is a deaf or hard of hearing audiologist who uses hearing aids or cochlear implants. And it's been great to be able to go on there and say, I'm dealing with this issue with listening checks of hearing aids. I'm having a hard time using my listening stethoscope and hearing if there's distortion in the device. What can I do? And then you have these other professionals who deal with this everyday as well and they've been able to give tips and tricks and hey, here's how you can get around this issue and here's how I use accommodations.
And Facebook, it's so accessible. It's so easy. Sometimes with bigger organizations, I have to email and then wait to hear back and you kind of get the instant gratification online. They were some of the ones who gave me ideas about if a patient's in the audio booth and I'm having difficulty understanding what they're saying, taking my remote mic and putting it on the patient in the booth so that then the patient's answers go directly to my hearing aids.
It's that thinking outside of the box and being able to talk with other audiologists who were going through it. That has helped me to think outside of the box more. Having big organizations like the Department of Vocational Rehab, it's great that those exist and they can be very, very helpful, but they can be hard to navigate, or you won't necessarily get the information very quickly. But that's where social media has been so wonderful because of fast access. I've loved being able to read, Oh, this person is struggling with this and this is how they've fixed that. Because even if that's not something that I struggle with now, it might be something I struggle with in the future or it might be something that one of my patients I see struggles with and then I can offer that as a solution.
Sometimes, the beauty is in the simplicity of an accommodation. Dr. Pratesi discusses this and provides an example of how her everyday need for an accommodation in practice also improves and informs patient care.
It doesn't have to be a big elaborate, fancy work around. It can be something simple. One of the ways I've actually gotten around the listening checks is I bought what's called a hit box. It's this equipment that you put the hearing aid in and you can run electroacoustic analysis on the device. And so it's kind of like a systems check. Like when you get the oil changed in your car and they hook something up to the computer and they run a diagnostic and they say, this is what's working, this isn't. So, the hit box tells me: is the hearing aid performing to the manufacturer's specifications? And it's a best practice guideline that we run this on patients. But a lot of the practices where I did clinical rotations as a student didn't have it.
And now that I'm in practice, if I have a student working with me or if I have a patient care coordinator who works part time, they have normal hearing. I can get them to do a listening check on a hearing aid. But if I'm by myself, I'm like, how am I going to know if this is working or not? I can put it in the hit box and run it. But like I said, this is a best practice guideline. We should all be using this anyway. So the listening check was sort of like a quick and dirty way to tell is a hearing aid working, but that's not the gold standard. And so actually by adhering to kind of the gold standard, it made it easier for me. And it's better for the patient because just because you listen to something doesn't mean it is working right. So it's making me do my due diligence and make sure it's really doing with the patient needs it to do.
There has been research that shows around 20% of hearing aids are going to be returned. But, there are other studies that show that about 30% of hearing aids out of the box aren't meeting manufacturer's specifications. So how many of those 20% returns could have been avoided if we were not taking the manufacturers word that the devices working, but actually running a test on it to make sure it's working before we give it to the patient? These patients have had a negative experience with a hearing aid and they're saying hearing aids don't work. Well, no, they don't if the device isn't working or if it's not programmed right. If the average patient waits 7 to 10 years after they need a hearing aid before they get one, sometimes it's that long before they'll even come in for a test.
We're doing a disservice to the patients if we're not following these best practice guidelines because there's technology. It can help them, and it's our lack of integrity that's then causing them to wait longer and delay treatment. And we know earlier intervention can make better treatment outcomes. We really need to be doing these hit box measures and real ear measurement, measuring at the level of the eardrum, how much volume the hearing aid is putting in for soft, medium and loud speech. It's the only way to accurately prescribe a device. If you program a hearing aid, but you're not running real ear measures, you're just guessing that the prescription is right.
During our interview, Dr. Pratesi reflected on how her disability informed her development and how theater opened up a whole new world of communication for her and taught her a lot about the different ways in which we communicate. She’s taken her love of theater and used her involvement in theatre as a way to build awareness and inclusion for people that are hard of hearing in the arts.
I was actually a theater and opera major at Auburn before I switched to audiology, and I got plugged into theater at a pretty young age. I actually have a heart condition as well. So it wasn't feasible for me to go into sports or anything like that. And growing up going to so many doctors for these health issues that I had, it was hard. And I had a lot of anxiety and maybe some resentment too, some anger about that. And so being the angsty preteen that I was, my mom got me plugged into a drama group and it was just amazing. It was so cathartic, such a great way to get all my feelings out in a healthy, safe environment and really helped me to learn how to express myself in healthy and constructive ways. You can kind of live vicariously through these characters you play in and learn a lot about yourself and how to be a more effective communicator. And that's the whole thing again, with hearing loss, it's barriers to communication. You know, I learned about body language and facial expressions and I just really developed this love for music, and performing was my background.
One of the challenges for me is always hearing the orchestra or hearing the music. But we have such cool technology now, like Bluetooth and in ear monitors and ways to get that sound to my brain and help me to give a better performance.
I got the opportunity this past year to play Belle in a community theater production of Beauty and the Beast. It was a dream role for me. It was just so much fun and getting to play this iconic Disney character, it was amazing. And I wanted to bring to the conversation that, hey, I have hearing loss and I get to be a Disney princess. There's no limitations. So I reached out to some of the different organizations I've worked with in the area like the Hearing Loss Association of America.
We had kids wearing their hearing aids and their FM systems come and see the performance. You'd go out afterwards in the big beautiful gold ball gown and you get to see these little kids and their eyes are just shining and they can see themselves up there maybe for the first time.
Finally, Dr. Pratesi reflects on what it means to be a doctor with a disability and how her disability improves her practice as an audiologist.
Even though it's unfortunate that I went so many years without hearing aids, I wouldn't change it now because getting to go through it as a patient and as a doctoral student at the same time, I don't think it would have been ingrained in my brain as much if I had gone through it at a younger age. It's always kept fresh in my mind what the patient's going to experience, what the patient's going to go through. And I think it's made me better at preparing them for, this is gonna take a little bit of work.
I don't think you have to have hearing loss to be a good audiologist. I think my hearing loss has made me a better audiologist because I do just have an understanding. Experience is the best teacher and having lived through that, it's taken me to a better place and it's made me a better doctor. So that's where I think sometimes these things that society might tell you is a disability, it can actually be a superpower if applied in the right way.
Join us on podcast #4 when we talk to Dr. Marley Doyle, a psychiatrist with a visual disability.
This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. It is released under a creative commons, attribution noncommerical, nonderivative license. This podcast was produced by Lisa Meeks and Kate Panzer.
This podcast was created using excerpts from the actual interview and is representative of the entire conversation. Interviewees are given the transcript prior to airing. Some edits may reflect grammatical and syntax adjustments for transcription purposes only.
References and Resources:
Association of Medical Professionals with Hearing Losses (AMPHL)
Hearing loss associations and organizations
Technology helps actor hear musical theatre’s beauty https://www.orlandosentinel.com/entertainment/arts-and-theater/os-et-belle-hearing-impaired-clermont-20190319-story.html
Auburn alumna with hearing impairment inspires on and off the stage as an actress and audiologist
McKee M, Smith S, Barnett S, Pearson T. Commentary: What are the benefits of training
Deaf and hard-of-hearing doctors? Acad Med, 2013;88(2):158-161. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3591515/pdf/nihms-447961.pdf
McKee MM, Choi H, Wilson S, DeJonckheere M, Zazove P, Levy H. Determinants of
Hearing Aid Use among Older Americans with Hearing Loss. Gerontologist. 2018; epub
ahead of print. doi:10.1093/geront/gny051 https://www.ncbi.nlm.nih.gov/pubmed/29788270
The AARP series of articles on how to navigate the hearing aid world.
Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press; 2016
According to the HIA statistics, the return for credit (RFC) rate for all hearing aid styles in 2014 was 19.4%, which is in line with historical industry data. http://www.hearingreview.com/2015/01/hearing-aid-sales-increase-4-8-2014-rics-continue-market-domination/