Why Aphasia Awareness Matters: What Survivors, Families, and Clinicians Need to Know

 Aphasia affects nearly 2 million Americans, yet most people have never heard of it. This episode makes the case for why awareness is not just a campaign, it is a survival issue. From diagnosis to discharge to community reintegration, gaps in knowledge cost survivors time, access, and outcomes. For everyone in the aphasia ecosystem who believes the information gap is a problem worth solving. 

In this episode of Brain Friends, we invite two stakeholders to celebrate Aphasia Awareness Month, Maura Silverman, the executive director of the National Aphasia Association (NAA), and Gee Jackson, a lawyer and stroke survivor with aphasia.

Together we answer two important questions:
1. What do you know about aphasia now that you wish you would have known on day 1?
2. How can we bring awareness to aphasia?

Listen, laugh, and learn how you can spread awareness about aphasia.

Links:
National Aphasia Association-  https://aphasia.org/
Aphasia Resource Collaboration Hub (ARCH)-  https://aphasiaresource.org/

 

https://www.cognitiverecoverylab.com/seles

https://aphasia.org/stories/announcing-the-davetrina-seles-gadson-health-equity-grant-program/

Our beloved colleague, Dr. Davetrina Seles Gadson, passed away January 11, 2025. Dr. Gadson was an extraordinary speech-language pathologist and neuroscience researcher who devoted her energy to studying health disparities in aphasia recovery. She was a fierce advocate for improving services for individuals with aphasia, particularly Black Americans. Her research transformed our understanding of these health disparities and shed light on how we can address them. We were privileged to have Dr. Gadson as a cherished member of our lab community for four years, first as a postdoctoral fellow and then as an Instructor of Rehabilitation Medicine. She was still a close collaborator and friend to many of us at the time of her passing. Dr. Gadson was an incredible person—compassionate, inspiring, and full of life. Her dedication to advancing equity in aphasia recovery and her profound impact on our community will never be forgotten. We are committed to honoring her memory by continuing to push our field forward and fight for equitable services for all people with aphasia. 

Transcript

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SPEAKER_03 0:00

Welcome to Brain Friends, where two neuronerds talk all things aphasia, language recovery, culture, and community. I am Dr. Datrina Celeste Gatson, a clinical speech language pathologist and neuroscientist.

SPEAKER_02 0:13

And I am Angie Clawthorn, stroke survivor and aphasia advocate. Welcome to our show.

SPEAKER_03 0:21

Welcome to Brain Friends. We want to thank all of our listeners for downloading the podcast. We appreciate everyone listening. So please tell a friend to tell a friend that we are here. And we are. Glad to be look on this side.

SPEAKER_02 0:54

Oh, come on now. Come through this side. And listen, we are celebrating uh June is aphasia awareness month. Let me ask you this. Well, first of all, let's get into our icebreaker.

SPEAKER_03 1:06

Okay, so today's icebreaker is what is your favorite thing to do by yourself?

SPEAKER_02 1:13

For me, I'm gonna say my favorite thing to do is to cook or bake. I like to do that by myself. I don't like people around, it makes me nervous. I get I start doing extra stuff because I want to look extra, I wanna, you know what I mean, throughout the you know, I want to be extra cookie and turn it into salt bag. Right, right. And for no reason, no good, good in hell, well, I don't need no more salt. But that's what happened. So I I I wind up almost showing off, and then it's not as good. So when I bake by myself, I could just do me. Yeah, because baking is a very simple uh and cooking is very simple, it's not about your um, it's about the flavor, it's about adding that extra, you know, not adding that extra, but staying true to what you do and making it really good.

SPEAKER_03 2:03

And you've had some of my baking. Oh my gosh, yes, your bake sweets, so good, worth every calorie.

SPEAKER_02 2:11

See, and that's when you know I was actually uh very um um uh honored because you know, you're so fit, you're always in the gym. You could have been like, Oh girl, this is good, but I can't. I'm trying to, you know, do whatever. And you were like, no, this is good. I'm eating the whole thing.

SPEAKER_03 2:30

So that was and it wasn't too sweet either. Because you know, sometimes people can go too sweet. This is what I'm saying.

SPEAKER_02 2:37

If somebody was watching me, I would have put too much in there. Okay. That's what I'm saying.

SPEAKER_03 2:40

Okay. Yeah. So what about you? What do you love to do alone? I like to play in dirt.

SPEAKER_02 2:49

Okay. I've seen on your Instagram that you will you are a DIY plant lady.

SPEAKER_03 2:56

Yeah. And in a cool you will hook it up. Planting, which is plant parent. And so I'll play in some dirt, I'll, you know, propagate apothos really quick. And so I just I like to play in dirt. Like, so since 2011, that was when, you know, I became a plain. And now I find that if I'm by myself, then I will just dig in.

SPEAKER_02 3:20

Mm-hmm. We should do something for the um therapy that that provides.

SPEAKER_03 3:26

Oh, yeah. I think that art, like there are so many different right brain types of activities that can really help with language recovery.

SPEAKER_02 3:38

And so let me well, let me ask you this real quick. If I'm doing things that integrate my right side, which is the creativity side of your brain, and the left side is the um language, the executive, the things that make things go in order. It's not as creative and free, it's very mathematical. Are you doing things that excite, no, um, engage the left, that other creative side will help me with my language?

SPEAKER_03 4:08

It can. It definitely can. I think that that's one of the things that makes the brain so unique is that in areas that have been damaged, we know that with neuroplasticity, it can strengthen and reroute. And so uh, if you're doing something that is creative, you know, that right brain hasn't been tapped into, you might find a new way to communicate using, you know, different words, or maybe your communication might become painting or just finding different outlets. I think it definitely decreases stress as well. That can help with uh being able to produce your words. If you're you know you're so stressed and you're getting tense, if you're able to tap into some of those other techniques, it could be supportive.

SPEAKER_02 4:58

That is awesome. You know, being that it's um Aphasia Awareness Month, we're gonna have Mara on, and she's the executive director over at the National Aphasia Association.

SPEAKER_03 5:10

Yeah, let's listen in to that conversation.

SPEAKER_02 5:13

We have my good friend Mara Silverman. Hi, Maura. Hi, Maura.

SPEAKER_00 5:20

Hey guys, thank you so much for having me. I feel so honored that I am a guest on this show. I use this show for orientation, for onboarding. I tell everybody about it, but apparently I don't need to because it's quite popular in itself. But some fangirling a little on y'all today. So thanks for having me.

SPEAKER_02 5:40

Oh, we're so excited to have you. Uh executive director of the NAA. What's NAA?

SPEAKER_00 5:49

The NAA stands for the National Aphasia Association. It's a 37-year-old organization started by Dr. Martha Sarno and just continues to grow, thrive, serve, engage. And wow, I mean, I've been working with the NAA since I started in the field. So what an honor to be able to be in this position of working alongside of the people that, you know, want to advocate for people with aphasia at a bigger scale like this. It's amazing.

SPEAKER_02 6:22

Wow. So you how long have you been in the executive directorship?

SPEAKER_00 6:28

Well, I um previously, previous to this job, I had founded and ran a nonprofit organization of an aphasia center here in North Carolina called the Triangle Aphasia Project. It is my um fifth baby, so I have four boys, but it is as much of my child as any of my other. Um, and I watched it grow and it was time to let it fly to uh new leadership. And the opportunity came here in September of last year. So I am about seven, eight months in position as executive director of the Nashville.

SPEAKER_03 7:08

So well, Moore, before I get into the first question, tell me a little bit about your journey as far as your career. Did you just wake up one day? Well, I know you had shared earlier that you had your own private practice, but are you a speech language pathologist by training?

SPEAKER_00 7:26

I am. So I um started out in psychology thinking, you know, I know I want to help people. Uh, wasn't sure what else I wanted to do. And then then I remember um observing a session with a speech pathologist, and she was working with a businessman in our area up in upstate New York, and I knew him. So I knew how bright he was, and he was struggling to get his thoughts into words, and it just tore me up, but it also motivated me and inspired, and it was that aha moment. Um, so I became a speech language pathologist, and I was able to have incredible opportunities in leading up to running tap because I kept thinking there has to be more for people with aphasia in their families. And so um I didn't want to be in that room closet that I was in in my very first job. Um, and I wanted to be into the gym where they were working out, or I wanted to be where they um worked and where they served and volunteered. And um, so I kept adding to my vision. And um it was 21 years ago that I quit my really good job to uh to be start a nonprofit, but it was the best decision I ever made. So yeah. Wow.

SPEAKER_03 8:43

And so what do you what do you know about aphasia now that you wish you would have known day one?

SPEAKER_00 8:52

Yeah, such a great question because I think that I was one of those people that knew that what I was doing was inherently right and instinctively. I knew that people should be working on things that they loved and their passion, but I was trained to do worksheets and drill and exercises, and it never felt right. And I remember people saying, Okay, well, that's enough chit chat, let's get to work. And I'm like, uh, chit chat's the goal. That's what that's what we want to be able to do again independently. So I think I wish I knew more about neuroplasticity. Of course, it developed over my career, um, more knowledge about it and understanding. But I wish I knew that it was okay to go with my gut and um work with people's passions and interests because I did it, but I felt like I was maybe doing something that I shouldn't have been doing. You know, I should have been structured and I was always much more conversational. So yeah, that's such a great question.

SPEAKER_02 10:00

Let me ask you, let me jump in here and ask you a question. Is there a specific story or experience that motivates the NAA's work in raising awareness about aphasia?

SPEAKER_00 10:14

Another great question. You know, I have like my personal answer to that, and then probably the NAA's answer. My personal um answer to that is um, you know, I had started tap and I was working really hard on um allowing people with aphasia their voices, and um uh I was leaving group work one day and couldn't reach my mom, and she had suffered a massive left hemisphere stroke, um, had aphasia. Great cosmic irony, you know, is this a curse or is this a gift? And um, it was literally an unselfish, totally Joan English thing to do to teach me how to help people with aphasia by experiencing it herself. So I got to see from the other side healthcare issues and um friends and family and really where the gaps were. Um, I think my experience with the NAA is to be able to look. I think the NAA would do best to serve people in a very interactional manner, um, to not be the you know, big computer program behind the computer where you, you know, ask a question about Ephasia and the NAA spits out the answer. Rather, hear your story, find out where your barriers are, see how we can help you connect to the amazing programs and providers that are all across this country. I mean, what a responsibility and what an honor. So, yeah, I would say that.

SPEAKER_02 11:50

Oh, wow, that is awesome. And it is um in Aphasia Awareness Month. Uh, what are the specific initiatives that the NAA is doing to uh raise uh public awareness about aphasia?

SPEAKER_00 12:09

So the NAA every year has kind of a theme, right? So um, which I learned a couple months ago that I need to come up with a theme. But it was actually very easy because it fit directly into what we've been trying to do since we got together and talked about um, you know, aphasia voices. We need to make them louder, we need to make them broader and reach everybody. So our theme this year is amplify aphasia voices. Um, one of the frustrating things to me is that there's often so much um of a bar or a threshold people want to be able to do that they leave all the errors that people make in normal on the cutting room floor. And editing is fine to a degree, but if you don't see other people in your that are making mistakes and having a basic errors, then those people are never gonna feel confident in getting out into the world and being. And so I think it's important to see people like yourself, to hear people like yourself. So we have a lot of work to do in raising that voice, amplifying it, improving equity, and so much that we can do. Um, and in that, we're doing three big initiatives um this year. One is um we are having films about aphasia because where do people get a lot of their information? Movies and films. And so every Monday in June, we have Movie Monday. And so grab your popcorn. And um, these people have these producers and actors have allowed us to use their films every Monday to educate people about aphasia, so they'll be able to tune in and watch those. Um, and then we have um Be the Voice of Aphasia, where we're gonna talk about aphasia um facts, but not us, people with aphasia, not people without aphasia, people with aphasia telling the facts, which is nice.

SPEAKER_02 14:20

Yeah, it is.

SPEAKER_00 14:22

I mean, it honestly in 2022 we had did a survey, the National Aphasia Association did a survey, and we were so proud because we raised awareness from 7% when people asked about, you know, do you know what aphasia is? And um, can you identify it as a language disorder? 7% in 2016. In 2020, it went up to 40%. Wow, 2022, I'm sorry. And you know, a lot of that was um Bruce Willis being diagnosed with aphasia, but there still is that need that there's 60% of people that still don't know what it is.

SPEAKER_02 14:58

Right, right. So important.

SPEAKER_00 15:00

Yeah, and so the last initiative is um actually my favorite, and it's called Library Showcase Project because libraries across the country always have displays about, you know, a month, whatever month it is, a special month. And now it's time to engage our community, people with aphasia, their families, providers, anybody, everybody, go into your library and say, I want to do a display about aphasia through the month of June. I'll take a week, I'll take a day, but give me a table. And um, we have a whole set of resources on our website um that is a PowerPoint. We have display ideas, we have resources that people can put up there. So we're encouraging people to help us amplify the voice.

SPEAKER_02 15:52

So tell me how that would work. So I would go into like my Barnes and Noble here in New Jersey and tell them I want to set it up, and then you guys would send me the material.

SPEAKER_00 16:01

Well, I'd love if you did at Barnes and Noble. We're we're targeting specifically libraries because they tend to have community um outreach already. Um, but boy, it'd be great for Barnes and Noble to do it too. Um, yeah, so you go in and there's a whole um presentation of how you go in. You can send email it to them. You can directly go in and show them the packet. Um, and then we give you ideas of materials and we also give you um some materials that you can print off and and put up there. Um, you can also put objects or things that represent aphasia, you know. Um, I'd bring my brain, my other little schematic brain, and yeah, really cool initiative because it puts the power to the people that are that want to help and advocate and amplify.

SPEAKER_02 16:51

So that is phenomenal. And then, Dr. Sliss, I think you have one more question.

SPEAKER_03 16:55

I do have one, yep, I have one more question. Okay, well, my one question you already answered, which was how can we bring awareness to aphasia? And I love those three things that the NAA are doing during this month. And so I guess my follow-up question would be that if you had three specific people or organizations that you would tell about aphasia or need to know more about aphasia, and not necessarily you as a representative of the NAA, but rather it's students, myself, um, who would they be? What organizations do you think would benefit from knowing more about aphasia?

SPEAKER_00 17:41

Well, it's such a great question because you have to think about, you know, who's going to be able to impact people right away. And the very first thing you think of is hospitals. Um, and from emergency rooms on the nurses, doctors, people that are in hospitals, um, but that may not be directly interacting, even the receptionist or uh uh physical therapy. You know, all those um allied health providers need to know about aphasia so that they um engage someone knowing they are cognitively competent, linguistically challenged. And I think that that's a huge one. The other ones are um, you know, really in the community. So I'm gonna group some of those together. Is um I remember taking my mom to the bank and um or the doctor's office, and they always would look at me and they would say, What does she want to do? or how's she doing? And I'm like, she's right here. But I think without that understanding of really the competent the cognitive competence piece, it it doesn't allow for um those people to interact in the way that would create that independence and and confidence for the person. So yeah, those would be the people that I would really target. And you know, as you are teaching these younger, you know, the students coming up, they need to know it's okay to be doing you get to know the person with aphasia, get to know where their communication barriers are, because the greatest therapy you can get that you don't have to pay for is life, right? Everybody always thinks therapy is life, therapy is not, no, it's not. Life is therapy, life has opportunities for therapeutic interactions all the time.

SPEAKER_03 19:37

Oh, that's perfect. Okay, micro, yeah, exactly, right? Make sure we get that mic drop in there.

SPEAKER_00 19:56

One of the things that I would definitely say though is that yes, it would be wonderful, as many people want a spokesperson for aphasia. But at the same time, I've argued that you see one person with aphasia, you've seen one person with aphasia, and you need to be very careful about identifying somebody because of their, you know, notoriety, their status, as this is aphasia, because aphasia impacts everybody differently. And so I would really think the best thing we can do to advocate is to create lots of noise, lots of voices out there so that people don't think of aphasia and think it's this or it's that because it's not, it's it's very individualized.

SPEAKER_03 20:42

So you got me all sorts of excited. This was so good. No, seriously, like just even, you know, ending in that that way. When you see one person with aphasia, it's one person with aphasia. And it, you know, I'm thinking about even going to my local grocery store and you know, asking because the only thing they could do is say no. Um, but I could ask them every year uh to bring awareness, and I I challenge other individuals to really do something different for this month to help bring awareness of aphasia to your community and beyond. That was so good. That was excellent. Thank you, Maura. I do have a question for you, and it's one of the questions that you know we ask her. And so if I can ask you the same, which is what do you know about aphasia now that you wish you would have known day one?

SPEAKER_02 21:45

That it exists and that it's um not beatable because it's no cure, but there is healing in it. I wish I would have known that there is a light at the end of the tunnel that is. Cave isn't consistently dark, and that uh if you do the work, um better um accessibility to words can come. What about you?

SPEAKER_03 22:12

Uh, I think one thing that I know about aphasia now that I wish I would have known day one is it is so much more than a loss of language for individuals. Come through, come through, doc. Come through, doc. Yeah. Come through. I think you know, in school, when you're learning about it, you learn about the types, you categorize the types, you learn about the different terms. And so sometimes you might even approach individuals with that type of ABC mentality, like, oh, okay, you made this mistake. Okay, so this is what this is. And I think in that you lose that there's a legit real person that's in there. It's not just that they have a loss of words or that they're not able to communicate the things that they want to say, it's that a piece of their identity has also been up for grabs, as you as you say sometimes. And that my role as a speech language pathologist is greater than just helping you be able to say your words. It's about helping you find that new normal, helping you integrate back into your community, helping spread awareness. And so I think that that's something I wish I would have known day one.

SPEAKER_02 23:42

It's because of first of all, that is absolutely a beautiful, beautiful thing, and how much more aphasia is rather than just I can't say my words, I can't write. It really does um pick at the the essence of a person, you know. It's and you always the thing that always really amazed me about it is how clear it is in my head. It's not jumbled in my head, it's not halting in my head, and um, but it's absolutely um fascinating to me.

SPEAKER_03 24:21

So and in good news, I know that they are starting to do studies on that inner voice that in your in your head talk that so many people have reported. And so I think that that's one thing that does get me excited, especially as we think about aphasia awareness and bringing more awareness to aphasia, is that there are different things to look at besides just, you know, the verbal expression piece and how many words someone can say. Now they're starting to look at some of the cognitive pieces around aphasia and things like what is that inner inner voice that you hear that you're able to say everything right, and what does that tap into? So since we do have aphasia awareness um month, we also have another aphasia friend that stopped by to give us their uh thing that they wish they would have known about aphasia day one. Here's G.

SPEAKER_01 25:24

Hi, this is G um Jackson. I live in New York City. I want to start off by getting a big, you know, shout out to Brain Friends Podcast with the creators, um, Dr. Celeste and Angie Carthorn. Um, they asked me to answer some questions for them, so I'm gonna, you know, answer them. What the first question is what do you know about aphasia that you wish you had known on day one? One key aspect of aphasia that I wish I had known on day one was the incredible potential for recovery through neuroplasticity. Neuroplasticity is the brain's ability to reorganize and form new connections throughout life. So this means that even after significant, you know, damage from a stroke, your brain can adapt and improve language with the right therapy and practice. So understanding that concept earlier would have given me um more hope and internal support um during my earlier years of my stroke. Um and the second question is how can we bring awareness to aphasia? I would say keep it simple. Talk to your family, talk to your friends, strangers, you can do speeches, anything that puts the spotlight on aphasia because people don't understand what aphasia is, um, and that will help you know the world. Um, and that's what I wanted to say, and I just want to thank you, um Angie. I'm gonna be watching Brain Friends because it's my favorite podcast. Thank you. Bye-bye.

SPEAKER_02 27:44

Right. Shout out to G and thank you so much for being available to us. Um, and I absolutely agree with her. Uh, the knowledge of neuroplasticity would have been a game changer. But I don't know if so maybe somebody had, I don't think they mentioned it to me until much later. But even if they had, I wouldn't have been able to receive it. It was just words because I'm really looking for not a pill, but I'm like, okay, neuroplasticity, that's great. Well, where do I buy that? You know what I mean? Like, we're always wanting something to be instant. Uh, thank you to G and Tamara for uh coming through and just dropping those gems. Yeah.

SPEAKER_03 28:25

Well, before we get out of here, um, I just want to challenge everyone to do your part this month with Aphasia Awareness Month. You can tell three people you don't know about Aphasia. You can send them to the NAA, the National Aphasia Association. We'll have that information linked. You can donate to Arch or Rosa. Angie um tell tell the people about Arch and Rosa.

SPEAKER_02 28:58

Rosa is the resource orientation for stroke and aphasia. We are having our third annual conference in October, October. And um, it's going to be a great day.

SPEAKER_03 29:12

Alrighty, and then the last thing that you can do is always share an episode of Brain Friends. Thanks so much.

SPEAKER_02 29:18

Come through Brain Friends. Come through Brain Friends. Thanks, Dr. Celeste. Thank you.

SPEAKER_03 29:25

Bye. We hope you enjoyed this episode of Brain Friends. Please leave us a five-star review on Apple Podcasts or your favorite streaming platform. Also, make sure you subscribe to our YouTube channel.