Bold Blind Beauty On A.I.R.

Living with Usher Syndrome and Redefining Audiology featuring Dr. Jasmine Simmons

• Bold Blind Beauty • Season 3 • Episode 1

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Episode title and number: Living with Usher Syndrome and Redefining Audiology featuring Dr. Jasmine Simmons Season 3 - #8

Brief summary of the show: This conversation touches on various aspects of living with hearing and sight challenges, along with the importance of self-advocacy and the role of audiologists in providing support and understanding to patients. Dr. Simmons also shares her personal experience and how it has influenced her work in the field of audiology.

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Bullet points of key topics & timestamps:
00:00 | Welcome
00:41 | Understanding Usher Syndrome and Our Guest's Journey
03:04 | Personal & Professional Journey of an Audiologist Living with Usher Syndrome
05:38 | Daily Challenges of an Audiologist with Usher Syndrome
07:22 | Adaptive Skills and Assistive Technologies
10:34 | Communication Style & Strategies
13:37 | How to Maintain Healthy and Well Functioning Hearing
16:10 | Assisted Hearing Devices for Those with Moderate Hearing Loss
18:17| The Beauty of Being an Audiologist with Hearing and Sight Loss
20:56 | Beyond Hearing Aids
21:46 | How Often Should Our Hearing be Tested
23:32 | A Triumphant Celebration

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Steph: Welcome back to another edition of Bold Blind Beauty On A.I.R. Podcast, the show that's clearing the air for more A.I.R. (Access, Inclusion, and Representation). I'm Stephanae McCoy and with me are my co-hosts:

Nasreen: I'm Nasreen Bhutta,

Sylvia: Sylvia Stinson-Perez,

Dana: and I'm Dana Hinnant.

Steph: After recording the episode you are about to hear, I realized that an essential aspect of our guest's story may not have been sufficiently explained. I'd like to provide some additional information to help you better understand her situation. Our guest, like many individuals with Usher Syndrome, was born deaf. However, she only discovered her sight loss due to retinitis pigmentosa, or RP, when she was a preteen.

 Similar to some others with Usher syndrome, her sight was relatively stable until earlier this year when she received a diagnosis of legal blindness.

 "I am different, not less." Dr. Temple Grandin. Our special guest today is not only an expert in the field of audiology, but she also brings a unique and personal perspective to the conversation. Dr. Jasmine Simmons has been living with Usher Syndrome most of her life. Usher syndrome is a rare and complex condition that affects hearing and sight.

Throughout this episode, we will explore Dr. Simmons's experience both as a professional in the field of audiology and as someone personally impacted by hearing and sight challenges. We'll gain valuable insights into the barriers she's faced. The triumphs she celebrated and the work she's doing to support individuals with hearing loss.

So whether you're a fellow audiologist, someone affected by hearing loss, or just curious about the incredible journeys of individuals who are different, not less, you won't want to miss this episode. It's an enlightening conversation. You won't soon forget. It's my pleasure to introduce you to Dr. Jasmine Simmons.

Hi, Dr. Simmons.

Dr. Simmons: Hi, it's lovely to be here, and thank you for having me here today with you guys.

Steph: We are so excited to talk with you. You are the very first audiologist that we've interviewed on a podcast, and we're looking forward to a wonderful conversation with you. So without further ado, I'm going to pass the mic to Nasreen for our first question.

Nasreen: Welcome, Dr. Simmons. Can you please share your personal and professional journey as an audiologist living with Usher Syndrome? And how has your condition shaped your perspectives on audiology and patient care?

Dr. Simmons: Great question. So my personal experiences with Usher Syndrome, and how it has impacted my professional experience.

So I have gone to numerous eye doctor's appointments growing up and recently I've been going to a lot more eye doctor visits and I have found that they lack empathy. And I also have found that I've been leaving my doctor's appointments feeling invalidated and feeling like I have, I was not heard.

I went to an eye doctor's appointment about two or three months ago. And my partner and I took off the day of work and we drove an hour and a half, just to get to the appointment. And the doctor only spent no more than five minutes with us. I just remember feeling unheard and just not validated at that moment. I just knew, I never wanted my patients to feel the way I felt at that appointment.

So I try my best to make sure patients are heard and seen. We hear horror stories from the BIPOC community that they don't trust doctors because of lack of trust and poor services they have received. So it is my mission as an audiologist and person with vision loss, hearing loss, to make sure my patients are heard and seen.

Nasreen: Honestly speaking, that is something many of us have experienced. I certainly have experienced that as well and it's one of the reasons that when you're, you're newly diagnosed or just trying to find information out there, it's very difficult. It's hard for us to build that rapport with doctors because of their cold bedside manners.

It's not comforting. You're dealing with your issue and then you have to deal with a doctor who doesn't have more than five minutes to explain a condition to you. So I think many of us have gone through that and appreciate you sharing that with us. Sylvia?

Sylvia: I agree that those feelings of not trusting and feeling invalidated are just, it's heartbreaking.

So my question is, you are in a unique role, and congratulations for all the work you do and thank you for your dedication. So, as an audiologist with Usher syndrome, what are the challenges that you face daily and how do you manage those specific challenges?

Dr. Simmons: So living with Usher's syndrome is a whirlwind of emotions. Some days I'm great, and other days I have my challenges with acceptance. So living with Usher's syndrome, as a professional at work, we do a lot of ear-related stuff. So things we put into the ears, so they're super small. So when I drop... the ear probe on the ground or drop a hearing aid on the ground I sometimes have difficulty being able to locate where the ear probe or the hearing aid that's on the ground. Sometimes have to ask for my patient's help and that's okay, but sometimes it's just a reminder that my vision is deteriorating, which is sometimes those days can be a challenge.

Sylvia: Most of us, or a couple of us on this call can relate to that gradual loss, and doing that as a physician, that just has to be even more challenging because your patients are counting on you, and I think there's a lot of challenges to that.

Steph: Dana,

Dana: What specific adaptive skills and assistive technologies do you use for work and your daily life?

Dr. Simmons: Yes. At work, I don't utilize any assistive technology per se, so for my vision, I'm in a familiar environment, so I don't feel the need to utilize my white cane at work.

However, there are moments where I have run into the door because I didn't see the door, or I ran into a chair because I didn't see the chair. So sometimes I'll move the chair around depending on where I want to position the patient in the room. And then I'll forget that I left the chair there and with my eyesight, I can't see anything below me so I may run into that. So that can be a challenge.

One of the accommodations I asked my colleagues to make is whenever I am working, usually, I'll take off my cochlear. And when I take off my cochlear, I can't hear anything at all. So I'm zen and focused doing my task and my colleague will flicker the lights to get my attention before they start talking and they know to wait a few seconds to let my cochlear turn on and then we have a conversation.

Sometimes my colleagues will approach me and walk in front of me and get into my line of sight because they do know that I can't see if they're standing right next to me, so sometimes they will walk in front of me and wave their hand to get my attention as well, which is another way that they get my attention.

But in my personal life, I use my white cane a whole lot more. At first, I was not using my white cane. I started using it religiously about a month or so ago. I got my white cane several months ago and it was just sitting in the bag because I just was not ready to utilize it. And then now I use it a lot more religiously.

For hearing, I use closed captions every day, all day, if I'm watching TV or videos, I always have captions on. If I don't have captions on, even though I can hear it, I'm lost because I'm so dependent on it and that's my best friend. So those are the things I utilize and I also am utilizing a cochlear implant, which helps me hear. So those are like my mobility aids that I utilize every day.

Steph: Thank you for that, Dr. Simmons. That's insightful, especially, I think, the way that your coworkers can get your attention. And I think for others who may be in a similar situation, it might be something that they might want to try.

Dr. Simmons: Absolutely.

Steph: Communication is a fundamental aspect of audiology. Can you describe how you adapt your communication style and strategies when working with patients with hearing loss? And how can patients with sight and hearing loss ensure they can communicate with their health care provider adequately?

Dr. Simmons: Absolutely. So You can't talk about communication strategies without talking about advocacy. So having self-advocacy is extremely important. I always recommend telling my patients that they need to be able to advocate for themselves. If you're not advocating for yourself, then how can you implement communication strategies?

So it is important to have that advocacy skill first to implement those things. So it is very important for patients not to assume that health care providers know how to work with your disability or they understand how to work with your disability. So it's important to have self-advocacy, so that way you can explain to your healthcare provider how they accommodate you the best for your disability.

And how I implement communication strategies as a healthcare professional. I make sure whenever my patients, I'm doing counseling, I position them correctly. So if they have a better ear, I'll make sure I'm talking to their better ear side. So that way they can hear me and understand me.

Another way I implement good communication strategies is by making sure they see my face. I never will be typing at a computer screen, trying to have a conversation with my patient. They came to my office for potential hearing loss or hearing problems. So, it is so important as a healthcare provider to look at your patients while you're having a conversation about why they're here. That also plays a role, in making sure they feel seen and heard. Because if I'm looking down at my computer trying to have a conversation, they're not going to feel huh accepted or feel like they're being listened to.

Sylvia: I love that. It's about respect, showing respect to your patient. I also think the thing about self-advocacy is so important. Each of us needs to learn how to, we first need to learn what accommodations or what assistance we need and then how to confidently ask for that assistance. So I'm so glad you talk to people about self-advocacy, such a critical thing.

I am interested in the next question we have for you because I've been experiencing sight loss for many, many years and so I have had headphones in my ears for years. So my question is, what tips can you provide for maintaining healthy functioning hearing?

And what are some recommendations for preserving and ensuring the long-term health of our hearing? I'm going to be taking notes.

Dr. Simmons: Okay. First and foremost, I always going to recommend hearing protection, even if you feel like you're going to be exposed to high-intensity levels for a short period, like the 4th of July, fireworks, hearing protection is needed. If you are in a NASCAR race where there are going to be loud levels for an extended period, I always recommend hearing protection.

The other thing I recommend is when you're utilizing earbuds or headphones, I always recommend at least 60 percent or lower. If you're going to listen to it louder, do it for a short period, like no more than 15, 20 minutes max. Because if you're listening at high levels consistently throughout the day, that's going to cause what we call noise-induced hearing loss, which is not reversible.

So it's important to utilize hearing protection and have lower level volumes while using headphones. Those are going to be my two biggest recommendations in our generation. Hearing protection and reducing headphone levels are going to be crucial in our period.

Sylvia: I love those 2 tips. I try to avoid those loud situations and I always keep my, for some reason, I keep my headphones as low as I can get them. So I'm at the 10 to 15 percent level usually. Because when it's super loud, it hurts my ears. Even if it's a little louder than that. So glad to know I'm at least doing something right in maintaining my hearing.

Dr. Simmons: Absolutely
.
Sylvia: Dana.

Dana: So my question would be, what are some of the assisted hearing devices that are available for those with moderate hearing loss?

Dr. Simmons: So, the devices I'm going to recommend hearing aids are going to be good for moderate hearing loss. However, it depends on the word understanding scores. If a patient has moderate hearing loss and they're not able to understand speech, then a cochlear implant may be a potential option for them.

They would need to go see an audiologist for clinical testing to see if they are a cochlear implant candidate. However, hearing aids is always going to be the first step that I would recommend. But overall, I recommend seeing an audiologist before you take action on doing anything because nowadays, if you see on TV, you'll see, "Get two hearing aids for $99." You'll see these different types of ads, and I've had patients spend a lot of money on different ads that are out there for amplifiers. And I'm going to explain what an amplifier is.

An amplifier makes everything louder. If speech and noise, a hearing aid will try to reduce the background noise and increase the speech signal. Is it perfect? Absolutely not. But is it going to be better than the amplifier? Absolutely.

So I recommend first seeing the audiologist. Then see what the recommendations are and your insurance may cover your hearing aids or give you a hearing aid discount. So it's always good to go to the audiologist first and see what your options are before you look elsewhere for alternative options.

I would like to add as an audiologist with hearing loss, it is a beautiful thing. And it's a beautiful thing because whenever I see a patient struggling with their hearing loss, and when it's appropriate, I'll let patients know and say, Hey, I understand, I have hearing loss myself. And the relief on the patient's face that I see the fact that they're like, okay, she gets it and that moment is, it's a beautiful moment because you know, patients need to have somebody that looks like them or even is going through the same thing or has gone through the same thing as them.

And it's just, it makes it more relatable and makes the patient more willing to accept where they are in their journey.

Steph: I would think that it would give the patient hope as well because they see you as a medical professional who is living with hearing loss. That can be a huge impact on someone who is going through that same experience and finding a medical professional who's going through it as well.

That in my mind would say, the sky's the limit. I can do anything I want to do. Yeah. Is it scary? I would imagine it is because when I began losing my eyesight, it was scary. But when I met other people who were going through it, I felt better because I knew I wasn't alone.

Dr. Simmons: Absolutely. Yeah. Absolutely. And I constantly remind patients that you're not alone in this journey. I, it is so important to acknowledge that you're not alone. Because if you feel alone, then it's gonna be a harder time for you to accept. And acknowledge your hearing loss or your vision loss, so absolutely.

Nasreen: You know, Dr. Simmons, I think that is what a lot of patients would love to hear from their doctors, is that you are not alone in this journey, and I think that would be more comforting for them, and easier for them to accept the disability in hand, like you said, knowing that someone here understands completely what they're going through.

Now, I know over the years, hearing aids, have changed. The technology of hearing aids has changed quite a bit. But Dr. Simmons, when hearing aids no longer can provide effective assistance, what other alternatives are available for improving hearing?

Dr. Simmons: So if a person wants to be able to hear, then the cochlear implant would be their next route. That would be the best next step is looking to a cochlear implant when hearing aids are no longer a viable option for the patient or if cochlear implant is not the best route then I would say American Sign Language learning that as well. Those are going to be your two options.

Dana: So Dr. Simmons, can you tell us how often should we have our hearing tested?

Dr. Simmons: Absolutely. I recommend having your hearing tested once a year. We are so conditioned to have our eyes checked and our teeth checked and we should add our ears into the routine. So once a year, even if you feel like you do not have a hearing loss, at least we have a baseline. And if things start to change, we're able to monitor that change.

Sylvia: What does that hearing test include? Do you get that from your regular Physician or do you have to go to an audiologist to get that basic?

Dr. Simmons: Yeah. So I highly recommend going to an audiologist for a hearing test. Your physician, I believe may do hearing screenings, I'm not 100 percent sure. However, I recommend going to the audiologist.

And the hearing test is based on, you know, the audiogram, tympanometry, otoscopy, and acoustic reflexes. It just all depends on what provider you go to. And it can be different tests may be added to it.

Sylvia: Ladies, I don't know about you, but I don't think any of my doctors have ever checked my hearing maybe as a kid in school, but I don't think adults. I think they look in my ears and maybe if, if you don't hear what they say or understand what they say, maybe they're doing this like cursory.

Steph: And I think, I think at that point they were probably making a recommendation, but I'm sitting here embarrassed because I remember the hearing tests we used to get in school. It has been like, forever since I've had my ears checked.

Nasreen: So Dr. Simmons, I understand you have a children's book coming out soon. Can you tell us a little bit about that book and its journey and conception?

Dr. Simmons: Absolutely. So back in February of 2023, I was officially diagnosed as legally blind. And that caused a little turmoil in my life and made me try to figure out what I wanted to do next with that diagnosis. And a month later, I ended up selling my car because I decided that it was no longer safe. So that moment was a really hard moment for me, and I channeled my energy into writing this children's book.

And that's what inspired me to write the Usher Syndrome series. So, my very first book, is about a little girl with hearing loss, and her name is Jordan, and how she faces adversity on the playground and in the classroom. And so, we get to journey with her and see how her confidence helps her face that adversity. And I plan on releasing that book in January of 2024.

Nasreen: Wow, what a great way to start off the new year, Dr. Simmons. Best of luck to you, your journey, and your publication coming out.

Dr. Simmons: Thank you.

Nasreen: Dr. Simmons, this has been a fascinating... conversation. We have learned so much, and some great insights shared, and I just wanted to know, how can people learn more about you?

Dr. Simmons: I have an Instagram page, Dr. D. R. Jasmine Simmons, and a Facebook page, Dr. Jasmine Simmons, and I also can be reached at my soon-to-be-coming website at drjasminesimmons.com.

Nasreen: Thank you, Dr. Simmons, for visiting us here at Bold Blind Beauty On A.I.R. today.

Thanks for listening to Bold Blind Beauty On A.I.R. With your hosts, Stephanae McCoy. Nasreen Bhutta, Sylvia Stinson-Perez, and Dana Hinnant. If you enjoyed this episode and you would like to help support the podcast, please share it with others, post it on your socials, or leave a rating and review. To catch all the latest from Bold Blind Beauty, you can follow us on Instagram, and Facebook, check out our YouTube channel at Bold Blind Beauty.

Thanks again for listening. And we will see you next time on another edition of Bold Blind Beauty On A.I.R. 

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Nasreen Bhutta

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Stephanae (Steph) McCoy

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Sylvia Stinson-Perez

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