HearSay

Exclusive Sit-Down with Gabby Giffords

• AudioEye • Season 1 • Episode 5

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In this final episode of the first season of HearSay, we had the unique privilege of sitting down with Gabby Giffords, former Congresswoman and AudioEye Advisor, along with her Speech-Language Pathologist, Dr. Fabi Hirsch Kruse. Gabby shares her personal journey with aphasia and what her life looks like today.

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View transcript: https://aeurl.xyz/hearsay-podcast-with-gabby-giffords-transcript

HearSay is produced by Sojin Rank, Mike Barton, and Sean Bradley. Edited by Grant Lemons.

HearSay is a podcast focusing on the advocates, heroes, and leaders making the web more accessible. We’re interviewing these change makers to hear what they have to say, to set the record straight, and offer their perspectives on how we can all work to make the web accessible to all.

Our lives can change so quickly. Mine did when I was shot. But I never gave up hope. I chose to make a new start. To move ahead, to not look back. I’m relearning so many things–how to walk, how to talk, and I'm fighting to make the country safer. It can be so difficult. Losses hurt, setbacks are hard. But I tell myself, “Move ahead.” I’m finding joy in small things… riding my bike, playing the French horn, going to the gym, laughing with friends. The small things add up. We are living in challenging times... we are up for the challenge. My own recovery has taken years. Many, many, many people have helped me along the way, and I learned so much. I learned when people care for each other and work together, progress is possible… a better world is possible. But change doesn't happen overnight. And we can't do it alone. Join me, let's move ahead together. Thank you very much. Hey everyone, welcome to the HearSay podcast. I'm your host, Ty D’Amore, and I'm a white male with a white shirt on and brown hair. Today I have a very special guest with us, Gabby Giffords, former Congresswoman and AudioEye Advisor. And also joined with us is her Speech Pathologist, Fabi. We're in Tucson, Arizona, and can't wait to get to this episode with you. Gabby, will you introduce yourself for our listeners? Hello, hello, hello. My name is Gabrielle Giffords. I was a US Congresswoman. In 2011, I held a Congress on your Corner event in my beautiful hometown of Tucson, Arizona. At that event, a gunman shot me and 18 others. Tragically, six people died. My journey of recovery has been long and difficult. Walking is really tough. Talking is really tough. But I will never, never, never give up. Thank you for this opportunity to be here with you today. And I'm Dr. Fabi Hirsch Kruse. As Ty mentioned, I'm Gabby’s Speech-Language Pathologist, and I have been working with Gabby for over ten years now. And I just feel so honored to know her and to be able to spend time with her. Thank you so much for being here. We're so excited to have this episode with you. You mentioned Congress on the Corner, and at the time you were a Congresswoman, and you were holding an event at Safeway. What do you remember about that day? I parked my car. It was freezing cold. Pam Simon–my dear friend–lent me her mittens. What do you remember? I was actually driving on Oracle, and I was about half a mile away from Ina on Oracle, where the Safeway was. And I saw a rush of cops coming. And at that time, my mom immediately called me and said, “Are you okay?” Yeah. Because I was at the store right across the street. But I just remember that day like it was yesterday. What do you remember? I, too, was driving and I remember exactly. I was driving my son to karate. I remember the intersection I was at, listening to the radio, listening to NPR. And they initially announced that you had died. No way, José.[Laughing] No way. And it was terrifying. I mean, to think that that could happen in our community. I was scared for our community, for my family to think that that could happen in our own back door. It's just very scary. It's very sad. Pam Simon is a very good family friend of mine. And, you know, I just remember my mom calling me and telling me that Pam was there. And Pam, you know, gave you her mittens. But yeah, just a very sad day. But you fought back. Gabby, thank you for sharing your story. And coming out of the shooting, you now were a person with a disability, and you’re battling aphasia and continue to recover and work every day with Fabi on this journey. But Fabi, not that many people know about aphasia. In our community we deal with, you know, so many individuals with disabilities. But aphasia isn't one that's always, you know, front and center. Can you help our listeners understand a little bit about aphasia? Absolutely. So aphasia is the loss or at least partial loss of the ability to use words to communicate. And usually communication, we think of speaking and certainly people who have aphasia often have difficulty with speaking. But when we communicate, we also need to take information in when other people are speaking. We use words that we write down or we read words. All of those are different areas with communication that can be impacted by aphasia. A really important thing to know is that it is a disorder of communication and not of cognition. So cognitive skills, the thinking skills are all still intact. It's just the ability to get to those words.

Ty:

Got it. So, Fabi, how many people in the United States live with aphasia? It's a lot of people. Over two million people in the U.S. are living with aphasia. Which means it's more prevalent than Parkinson's disease, more prevalent than multiple sclerosis, other disorders that most people know about. Yet so few people know about aphasia. Yeah, it's, you know, when I talk to people about AudioEye and digital accessibility, often, I often say, you know, 20% of people have a disability. And everyone kind of looks at me. And that's a huge statistic, right? One in five. So to hear that two million people in the United States suffer from aphasia. That's a big statistic. And how did you get started studying aphasia or in your practice? I... from the beginning, was very interested in working with people who have aphasia. I think I went into speech pathology, like most people do, thinking I would work with children, helping them with their R's and their S's. But then met a gentleman in the hospital who had aphasia, and it was so fascinating. The things that he could do and the challenges he faced. But it also just really tugged at my heartstrings to think that he could no longer communicate. And that just drew me in to what could I do Yeah. to help people who have those struggles. Yeah. So when you're working with these patients, are you using any type of technology with them? Is it a lot of practice, like a lot of just practice one on one time or what's that look like? There still is a lot of practice, as Gabby knows, involved in speech therapy. But the advances in technology have been just tremendous in the work that I'm able to do and just the functional activities that people can reengage in now using technology to compensate for some of the struggles that they're having. And just as an example, speech to text and text to speech functions for people who struggle to write a text or an email to be able to use their speech, to then have that, you know, translated essentially Yep. into a text is incredible and so valuable for so many people who are living with communication difficulties. Oh! RoadHouse, captions. Oh yeah! We went–that's a really good point. We went to a show at a local movie theater specifically because they were advertising that it had the captioning. Yeah. And that was a really fun experience for us Yeah. because some of our group members at our aphasia center have difficulty with auditory comprehension. So when they just see a movie on a screen, they're missing a lot. At home they can turn on the captions, but when they go to a movie theater, they often don't have that option. But more and more theaters now are providing that which is great. That's awesome. We also, in the disability world and technology world, we use the term universal access. Because for me, if I'm watching TV and let's say, we're in bed and I'm watching TV and, you know, my wife’s sleeping, I don't want to have the sound up. So I use the closed captioning to be able to watch TV. And we, you know, there's so many things that we do with technology that are developed or made for people with disabilities. But they just make the better–the world, a better place. Siri was actually designed for a person with a disability. But Siri is now a tool that we all use, Yeah. and we love it. Well, and one thing that we encourage our group members at the aphasia center, anyone really I work with who has aphasia, is to take photos on their phones during the week. And then we always start our sessions with conversation. And if you can't tell me where you've gone or who you've seen, but you can show me photos on your phone. We can have a really great conversation that is also very natural because that's what everybody is doing, not just somebody who has a communication disorder. So it really allows us to use technology in a very natural way, but in a very facilitative way. Absolutely. And Gabby, what does aphasia mean to you personally? Aphasia really sucks. The words are there in my brain. I just can't get them out. I love to talk. I'm Gabby, and I'm so quiet now. Gabby, after the shooting, you went to Houston to recover, and then you got to return home to the great Tucson, Arizona. Were you excited to return? So excited! The mountains, the desert, the sunsets, I'm home! Absolutely. And then you met Fabi. So how did you two meet? I actually got a call from Houston asking if I would interview to work with you. And I was thrilled. I, of course, had been following anything I could see in the news about your recovery. I knew that you had aphasia. That was my area of expertise. And I think, like probably anyone in Tucson, I was just looking for signs of some good coming out Yep. of that terrible day and to know that you were recovering. And so you coming home was a big step, and I was very excited. And then to get a call to actually work with you.[Laughing] And I remember–I remember very well[Laughing] because I came in and Mark, your husband, greeted me at the door. I went, sat down at the kitchen table, and you just marched in. Yep, absolutely. You marched right in, sat at the table across from me, took my hand and just, mhm, looked right at me very determinedly. And I just knew right away that we were going to work very well together. And we have sat at that kitchen table for[Laughing] many hours, many, many hours doing therapy. So... yeah. And what's it look like from, you know, when you sit down and you guys go through therapy? What's that–what are you working on, and what are you guys doing? We work on a lot of different things. We work on speech production. We work on comprehension, reading, writing, a lot of different things. But if we look just at speaking, so we work on word finding. That's a struggle, right? Yeah. You know what you want to say. It's hard to get to the words. So strategies to help get to the words. It, it. Yes! And then building words into sentences because contrary to what you would think, it's those little words, those pronouns, those prepositions, what we call function words or functors. Those are the hard things. But those are the things you need to make sentences. But one thing that's been really fun to work on has been speeches. So as a therapist, I shouldn't be the one saying, “Oh, this is what we're going to do in therapy.” It should be, What do you want to do? What's meaningful to you? What’s important to you? And for Gabby, it was speeches. Yes. You were a brilliant public speaker before you were shot. You shared powerful messages, and you wanted to return to that. Yeah. And so that's something that's been a really big part of our speech therapy sessions are those public speeches. Yep. Absolutely. And Gabby, I know early in your recovery, there was only a few words that you could say. What, what, what, and chicken, chicken, chicken, chicken, chicken, chicken, chicken, chicken, chicken. So if you can imagine that. It's not uncommon after a stroke or brain injury to have what we call perseverations, where there's just a word or even a nonword, any time you try to say something, that's all that will come out. But it just strikes me that being in the hospital, you don't know what happened to you. You’re in pain. And any time you want to ask a question, you want to say anything. And the only things that will come out are what or chicken. That must have just been terrifying. Terrible. Yeah. So, Gabby, to contrast where you've come from with just what and chicken. I'd love for you to share with Ty a part of what I think is your longest Yes. speech, your Summoning Hope Speech. I’ve known the darkest of days, days of pain and uncertain recovery. But confronted by despair, I’ve summoned hope. Confronted by paralysis and aphasia, I responded with grit and determination. I put one foot in front of the other. I found one word and then I found another. My recovery is a daily fight, but fighting makes me stronger. Words once came easily. Today I struggle to speak. But I have not lost my voice. America needs all of us to speak out. Even when you have to fight to find the words. Gabby, that speech was incredible. So what does the process look like to be able to deliver something like that? I can't make that speech, even if I tried for four years![Laughing] What does that process look like? I'm glad you asked, because I think people hear you give your speeches and they think that you get your speech and you go up, and you can just read it and it sounds so beautiful... No. from the get go. And that's absolutely[Laughing] not the case. It is so much work. So we usually start, you get a speech from your team. Yeah. Nix it![Laughing] And we go at it with the Sharpies. Oh, man. So I'll read through every line of a new speech. And Gabby, like you said, nix it. Anything that is not in your voice, doesn't resonate with you, just doesn't feel right. Nix it. Oh those poor speeches, they get torn apart. And then once we have something that you feel really good about, it's a process. Yes. We go line by line. Sometimes we have to break each line into shorter pieces, sometimes individual words. What... And. Sometimes there is just a word or two. My journey of recovery is long and difficult. Yeah, see, that's a really good point. So we have all of these strategies and techniques to help you master each line, and using rhythm and intonation is one of those strategies. For lines that are really tricky, we’ll pull in some intonation, some rhythm because that is believed to pull on different parts of the brain than are traditionally used for speech. So we use music. We use gestures. Some, yep, something starts with a C. Sometimes you'll Two. cue yourself. We’ll use numbers. If you need to get to the word two, you'll either cue yourself or we'll write it. We have pictures on your speeches to help you get to difficult words. Yeah. And then after I leave, the really heavy lifting happens. So we spend all our time in therapy working on those speeches when we have a new one. And then once I leave, we record them. And then Gabby just practices them for hours and hours and hours to the point where she can say them fluently, and to the point where she doesn't need the speech anymore. That's how much she works on them, how well she learns them. And it's such a good thing, I think, for you, because you have such powerful messages. But it's so hard to be fluent Yeah. because of the aphasia. So just having these beautiful speeches where you can be fluent and you can share your powerful messages again, is just a really wonderful part of therapy and how it translates out into the world and into your life. Boom. That's incredible to hear the process, and it's a journey. Yes. It’s always a journey. So how's therapy going for you, Gabby? I'm getting better. I'm getting better. Yeah, I absolutely agree. And I think it's so valuable for people to see that you are getting better. Thirteen years after being shot, you continue to improve. And there is a lot of misinformation about length of recovery and plateaus that somehow at six months or twelve months, somehow recovery just ends. And it's simply not true. I mean, you are a perfect example of that. But everyone I work with continues to improve, puts in hard work and continues to improve. And so I think, both for the medical community and for people who are living with disabilities after a stroke or brain injury that they see that. They see you continue to improve, and that they recognize that they too Yep. can continue to improve with hard work. So important. Everything takes a lot of hard work. A lot of–a lot of hard work. Gabby, are you optimistic about your continued recovery? I'm optimistic. It will be a long, hard haul. But I'm optimistic. And from your side, Fabi, are you optimistic on where it's going and seeing the improvement day over day? Absolutely, absolutely. And there are times where we shift to working on something else because your brain is consolidating things that you've worked on. So we can take some time away from that. Let's work on something over here, and then maybe we'll have a new speech. Or there might be something else that comes up, that in your travels is really important for you to be able to say and to be able engage in. So we're always shifting what we're working on depending on what's important to you. And, Gabby, this, you know, it's so much hard work. And it's a journey, and it's an uphill battle sometimes. Do you ever want to give up? No way, José![Laughing] I didn't think you would. Gabby, so we've talked a lot about work and about speech therapy, but what do you like to do? I'm so busy. A lot of zoom calls–work, work, work, yoga twice a week, French horn, Spanish lessons, biking, the gym, pool therapy, physical therapy, PBS, and I'm traveling a lot. You are very busy. And you also mentioned the French horn. When did you start playing the French horn? I was thirteen years old. And the French horn. Why did you choose the French horn? Playing the French horn feels really good. I love the challenge, and the music fills me up inside. Did you have to relearn how to play? Not really. It's all still there in my brain. Reading the music is hard. So, Gabby, it's not some master plan to rewire your brain? No! [Laughing][Laughing] Because music can be really important in recovery. But I think you bring up such a good point with everything you do, how busy you are. That doing things that just feel really good, that give you joy are–those things are so important. Yeah. And everybody as they’re working so hard in their recovery should take time Yeah. to do things that really make them feel good. Yeah. I agree with that. So, Gabby, I have to ask, what is your favorite type of music? I love lots of different types of music. Calexico, ACDC, John Denver, I love it all! Do you like to sing? I love to sing, I love to sing. I heard that you also love to ride your bike. I saw it in the documentary, and I've seen you riding around Tucson before.[Laughing] What type of bike do you ride? I ride a recumbent trike. And how often do you ride? Every day, every day. And you participate in a big cycling event every year, right? El Tour de Tucson! What distance do you ride in the tour? 32 miles! 32 miles! That's long.[Laughing] That takes a lot of practice to Yes. get there. I heard in the Tour, you had a very special guest riding with you for the last few years. Mark Kelly. And how do you describe your teamwork? He is my best friend. He is so funny, funny, funny. I love him a lot! Gabby, can I share just a really sweet story about you and Mark? I love that the documentary captures just the relationship that you two have because it really is lovely.[Laughing] But I'll share one funny story. We were in the kitchen doing therapy, and Mark came in with a bag and he put the bag down and came over. And you grabbed his head,[Laughing] gave him a big smooch on the top of his head, and it was “Bye.” “Bye.”“I’ll miss you.” “I‘ll miss you.” And I’m thinking he's going off on some long trip. And so he gets up and grabs his bag, and I’m like,“Mark, where are you going?”“To the gym.”[Laughing] He was going to the gym! And they just have this, just really beautiful, funny, and just wonderful relationship. And, so... I also love in the documentary, when you look at Mark and you tell him to slow down,[Laughing] That was one of my favorite parts in the entire documentary. Slow down! Slow down, slow down. And Mark had some big news recently. How do you feel about his election to the Senate? I'm so proud of him, so proud of him. We're so proud. And he's been representing Arizona great. Yeah. So let's talk a little bit more about the Tour del Tucson. And I heard that you ride for a very special team. Friends of Aphasia. Yeah, Gabby and I started a nonprofit called Friends of Aphasia to help other people who are living with aphasia to provide very high quality therapy services, also to educate and advocate for people who are living with aphasia, and to be engaged in some treatment research to really help people everywhere who are struggling to communicate. And so one of our favorite things is to ride in El Tour de Tucson, and we have the opportunities there to teach people about aphasia. We all have our jerseys on, and it's just such a fun event to be out in the community, enjoying our time out there and raising awareness. That's awesome. Yeah, it's so important that people know what aphasia is. It's only when people understand what aphasia is and how to communicate successfully that our communities will really be aphasia friendly, Yep. and people who are living with aphasia can feel comfortable reengaging into their communities and back into their lives. That's awesome, and just so cool that you do that. At AudioEye we have the privilege of working with so many folks with disabilities ranging from blind to deaf to cognitive disabilities. And as much as we help them with our technology, they also help us learn how to develop better, and we create a lot of job opportunities for people with disabilities. So that's really cool that you do that with Friends of Aphasia. In 2022, a documentary came out about your life, Gabby Giffords Won't Back Down. Why did you decide to take part in the documentary? I love the film RBG. The directors–Betsy and Julie–do a wonderful job celebrating women's lives. Strong women get things done! And Gabby, what is it like being the main subject line in a documentary? Amazing, amazing. COVID was hard. Masks, Zooms… no hugs. But the crew was fantastic! Visiting my mom, speech therapy, my bat mitzvah, riding my bike, and a whole lot of singing, a whole lot of singing! And I've watched the documentary, and I absolutely love it. What do you hope people will take away from seeing your life story? It has been really important to move ahead, to not look back. I hope others are inspired to keep moving forward, no matter what! No matter what. Gabby in 2021, you celebrated your bat mitzvah. Why was that so important to you? My dad was Jewish. I wanted to feel connected with my Jewish heritage. That's awesome that you did that. And I saw that in the documentary as well. Gabby, you've done so much. But in 2022, you were invited to the White House to receive the Presidential Medal of Freedom, the highest civilian honor in the U.S.. What was it like receiving the Presidential Medal of Freedom? Perfect, perfect. Amazing, amazing, amazing. Gabby, what's your advice to people looking around their own communities and wondering what they can do to make a difference? Be a leader, set an example, be passionate, be courageous, be your best. I love that you said be courageous because I think you are such an incredible model of courage. I go to events with you. I mean, most people don't like getting up on a stage to speak in front of thousands of people. But despite your aphasia and the fact that words might not come, you put yourself out there. You get up on the stage. But when you're not on the stage, you engage with everybody at events. Someone will be by themselves in a corner,[Laughing] and you'll always approach them and just be so open and just embrace who they are. And it's so hard because you don't know if the right words will come out,[Laughing] but you never shy away from it. And I just love that about you, that you are so courageous. And I do hope that other people are inspired to be courageous when they see that in you. Thank you, thank you. I agree. And, Gabby, when you look at your recovery process, is this a process of discovering a new Gabby Giffords or a fight to reclaim the old Gabby Giffords. The new one–better, stronger, tougher! I love that.[Laughing] I love that. Gabby, it's been 13 years since you've been shot. What have you learned from the experiences over those years? Be grateful for friends and family, and to live every day to the fullest! Every single day to the fullest. Life's a celebration. I love that. Gabby, I have one final question for you. It's hard for you to talk. It's hard for you to walk. And every single day you're fighting this journey and you're getting better. And you do it with this positive, infectious attitude. It gives me chills even talking about it. What keeps you going? I want to make the world a better place. Gabby and Fabi, thank you so much for coming and sitting down with us on the HearSay podcast. It's been a pleasure to talk and to get to know a little bit more about Friends of Aphasia and what it looks like in the day in the life of Gabby Giffords. We're so honored to have you on our advisory board here at AudioEye, and we are so lucky. And thank you so much for being an inspiration to the world, Gabby. Thank you, thank you. Thank you. HearSay is produced by Sojin Rank, Mike Barton, and Sean Bradley, and edited by Grant Lemons. And if you enjoyed this podcast and don't want to miss future episodes, please subscribe to our YouTube channel.

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