Meet Kristin Smedley: Author, of Thriving Blind: Stories of Real People Succeeding Without Sight. Interview by Simon Bonenfant

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Full Transcript Below Show Summary:

Life is funny… sort of. That’s how Kristin sees it! Kristin Smedley is an award winning non-profit leader, TEDx speaker, and author – but she never planned on any of that.

Image of the Thriving Blind Book Cover

however her personal path to greatness took an unexpected turn when two of her three children were diagnosed as blind. She had to learn the tools of blindness and build a team of experts that would help her navigate this path that she had not been trained for. Kristin’s two blind sons are now thriving. (taken from www.KritinSmedley.com)

Blind Abilities Teen correspondent, Simon Bonenfant, sat down with Kristin to talk about her book Thriving Blind. Kristin shares her experience from raising 2 sons who happen to be Blind, and how she found confidence from others who were living successful lives without sight. Her journey through education and meeting parents who faced the limited expectations gave Kristin the incentive to do more.

Learn about the foundation she created and what led her to write her first book, Thriving Blind.

You can find Thriving Blindin paperback , and in Large Print, as well as in Kindle Edition. You can also go to www.KristinSmedley.comand get the Electronic Braille format.

Contact:

Thank you for listening! You can follow us on Twitter @BlindAbilities On the web at www.BlindAbilities.com Send us an email Get the Free Blind Abilities App on the App Storeand Google Play Store.

Check out the Blind Abilities Communityon Facebook, the Blind Abilities Page, the Job Insights Support Groupand the Assistive Technology Community for the Blind and Visually Impaired.

Full Transcript:

Full Transcript

Meet Kristin Smedley: Author, of Thriving Blind: Stories of Real People Succeeding Without Sight. Interview by Simon Bonenfant

Kristen Smedley: I was pretty much told, "They might have to know Braille, they'll have to learn how to use a cane, and good luck."

Jeff Thompson: Introducing Kristin Smedley, author of the new book Thriving Blind.

Kristen Smedley: Nobody told me what was possible for them. I had no education on blindness whatsoever. I spent 19 years going out and finding people that were literally succeeding without sight.

Jeff Thompson: Thriving Blind on Amazon for paperback and Kindle, and large print, and you can go to kristinsmedley.com for the electronic Braille version.

Kristen Smedley: And how about this? I told our principal about it, and he sent Michael's entire IEP team to that high school to hear Eric talk.

Jeff Thompson: Kristin is an advocate for parents of blind children, and herself is a parent of two sons who happen to be blind.

Kristen Smedley: "I'm kind of nervous and all," and she goes, "Are you kidding? I was so happy to be invited because the first book I was in, it was about being a failure."

Jeff Thompson: An interview conducted by our teen correspondent, Simon Bonenfant.

Simon Bonenfant: We all have our cross to bear, and we all have something that's going on, and there's two ways to look at that. We could either get down about that, or we can find encouragement in each other through our sufferings, and turn into something good if we stand together through that. It sounds like your book promotes that as well.

Kristen Smedley: I love that, Simon.

Kristen Smedley: Whether they were blind from birth or came into blindness later in life, they all had a different strength that they found in themselves.

Jeff Thompson: For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com, on Twitter @BlindAbilities, and download the free Blind Abilities app from the app store and Google Play store. That's two words, Blind Abilities. And be sure to enable the Blind Abilities skill on your Amazon device just by saying "enable Blind Abilities".

Jeff Thompson: And now, please welcome Kristin Smedley and Simon Bonenfant.

Kristen Smedley: When you're first told that you think you're going to have this life plan, and now you got to rethink your whole thing, it kind of stinks.

Simon Bonenfant: Hello Blind Abilities, this is Simon Bonenfant here. Today I got a chance to talk to Kristin Smedley. How are you doing, Kristin?

Kristen Smedley: I'm good, thanks. I'm so happy to be here, Simon.

Simon Bonenfant: And you are the author of a book, Thriving Blind.

Kristen Smedley: That's right, that's my new book. First book, new book.

Simon Bonenfant: Very good, congratulations.

Kristen Smedley: Thank you.

Simon Bonenfant: And what is your book about?

Kristen Smedley: So Thriving Blind is stories of real people succeeding without sight. It highlights 13 people that are chasing their dreams, living in the careers that they choose to have, regardless of vision loss. And I say 13, it's actually 12 interviews that I did, and the 13th person is Erik Weihenmayer, the blind mountain climber and adventurer extraordinaire that wrote the forward for the book.

Simon Bonenfant: Very good.

Simon Bonenfant: Let's just go back a little bit. How did you get the idea for the book, and what is your past interactions with blindness? How did you get in the blindness field?

Kristen Smedley: I came about this by accident. Two of my three kids were diagnosed as blind 19 and 15 years ago. I was pretty much told, "They might have to know Braille, they'll have to learn how to use a cane, and good luck." Nobody told me what was possible for them. I had no education on blindness whatsoever. I spent 19 years going out and finding people that were literally succeeding without sight, because I wanted my boys to do that. I didn't want to just be that we would go home and be blind.

Simon Bonenfant: What was their journey like throughout school?

Kristen Smedley: They did all of the regular public schools. They were even on baseball teams and the swim team. All kinds of stuff in our town. I've worked myself silly to make sure that they could do everything that they wanted to do. Honestly, I never would've anticipated all of this, and I didn't think all of this was going to be possible when those first diagnoses came, until we met Erik Weihenmayer.

Kristen Smedley: He had just come off of Everest and was climbing the other seven summits, and I thought, "Well... " That was when Michael was six. I thought, "Well, if he can do it, we can do it. We just have to find all the tools and resources to do it." Which has been an interesting journey with getting some things and fighting for others, as I'm sure your family can attest to. But we've made it work.

Simon Bonenfant: And how did you meet Erik? How did you first meet him?

Kristen Smedley: You know, somebody sent me his book when Michael was a year old, I believe, and then... I have to remember. Through happen circumstance, I found out he was going to be speaking at an event in my hometown of Philly, and there's the Associated Services of the Blind of Philadelphia—

Simon Bonenfant: Yep. ASB, yeah.

Kristen Smedley: Yeah, they put on an awards banquet every year, the Louis Braille Awards, and Erik was being recognized. Somehow I was able to get ahold of Erik's dad Ed. I got him on the phone and said, "Listen, while you're here, we'd love for Michael to meet Erik," and it turned out that Erik was speaking at a high school right near my house. And how about this? I told our elementary school principal about it, and he sent Michael's entire IEP team to that high school to hear Erik talk.

Simon Bonenfant: Wow, that's incredible.

Kristen Smedley: Yep. And I really credit that moment with, when they came out of Erik's speech, their minds were wide open to all the possibilities for Michael, and then eventually Mitchell when he went to that school.

Simon Bonenfant: That's great. And I've heard you speak before [inaudible] and I've always taken away that you're a big advocate for the blind doing whatever they want to do.

Kristen Smedley: Whatever they want to do. Yeah.

Simon Bonenfant: It sounds like Erik really inspired you to get that way.

Kristen Smedley: He was the number one inspiration for that, and the second person along those lines was a woman by the name of Kay Lahey who's a mom of a blind man, because he's now in his late 20s or early 30s on Capitol Hill, but she was the first mom that I met that said, "You can still have them do whatever they want, you're just going to have to do a lot of work behind the scenes in the early years to get them the tools that they need, and then watch them soar." So I was lucky.

Simon Bonenfant: Very good.

Simon Bonenfant: And when did you have the idea first to seriously pursue the book and chronicle your experiences and other people's experience? When did you first get the idea to say this is something that you're going to seriously pursue?

Kristen Smedley: That's a great question. Right around 2011, I started the patient organization for our specific blindness. Initially it was set up to fund research for a cure, but then I was meeting all these parents through that organization that were pretty much, for the most part, sitting on the couch and crossing their fingers for that cure, because they still had no idea how to get out there and get the kids the tools and resources. A lot of schools were telling them that they didn't have the resources, and they were giving them some bad information in terms of Braille and activities and options and stuff like that.

Kristen Smedley: So then I started sharing all the stories that I knew of these folks that I was meeting, blind architect and mechanic, all the possibilities that were out there, and I thought, "Okay. We've got to get this to everybody." It was going to be either a website or a pamphlet for doctors to hand these families so that they knew there was some potential. And that pamphlet and website evolved into a book.

Simon Bonenfant: Wow, that's great.

Simon Bonenfant: Just going back to your foundation, what is your foundation called, and how did you get the idea to start that up?

Kristen Smedley: So crb1.org is the Curing Retinal Blindness Foundation, and like I said, it specifically started for kids like my boys that are, it's a mutation in the crb1 gene that causes their Leber's congenital amaurosis. We did initially start because there was work being down in the field that was using gene therapy to restore some vision, and initially that was my hope, that a miracle would come and they'd be able to see. All in a day's work, right? But then we quickly had to diversify the mission to realize that that's how we were going to help people get tools and resources to raise these kids.

Kristen Smedley: Because honestly, there's a lot of people out there that are blind and happy with their lives that way.

Simon Bonenfant: Oh, absolutely.

Kristen Smedley: And honestly, in my house right now, one of two is saying, "I'm good. I'm fine. This is me, and this is my life, and I'm just fine." The other one's saying—

Simon Bonenfant: That's the way I see it.

Kristen Smedley: Yeah. And there's a lot of people in the blind community that are like that. And then the other half is saying, "Well, if I have an option to do some things that I can't do without sight, I'd like that option."

Simon Bonenfant: And that's okay as well.

Kristen Smedley: Yeah! Yeah. But you know, for a while there, the blind community wasn't open to... one side of the fence wasn't open to the other camp's way of thinking, and I think that we can all live in the same world with those two different options and be cool with that.

Simon Bonenfant: Exactly. Because until that day comes, they're blind, and we can all learn from each other.

Kristen Smedley: Yep.

Simon Bonenfant: That's the way it works.

Simon Bonenfant: So going forward to your book, how did you get the people that you were wanting to get? When you first started it, did you have instantly in mind these 13 people, or did it kind of evolve?

Kristen Smedley: That's a great question. I just reached out to the people that I had met, and there's a few that I had not met at that point. It was just through conversations with the IEP team and other people. When I was saying, "I'm putting this book together," people said, "Oh you got to interview this person, and you got to interview that person." But for the most part, I met them all and they all jumped on board with it and said yes.

Simon Bonenfant: Very good.

Simon Bonenfant: So how did you conduct the interviews? Did you go to where they lived? [crosstalk]

Kristen Smedley: It was all on the phone.

Simon Bonenfant: Oh, on the phone. Okay. Very good.

Kristen Smedley: Yeah, I found an app called... if I remember right, it was called Tape A Call, and I was able to record all the interviews and take notes, because my mind can't do one or the other, I have to do two things [crosstalk] And then I transcribed all of those interviews, and interestingly enough, initially I was writing the book in my take on their interview. And then a friend of mine said... I was in this Mastermind group where we all got together on Skype and talked about our businesses and our ideas and help each other work through stuff. And my Mastermind group said, "Wait a minute. People are going to want to hear their own words. From your people that you interviewed, do it in their words." That actually made it way easier. I just edited it down to fit in the book.

Kristen Smedley: So it's totally written in, it's their own words, each of the people I interviewed, and you can tell one of my editors emailed me and said, "Is this guy that I'm going to... " it was Simon Wheatcroft... she goes, "Is he from the UK? Because he talks differently." The way I wrote it, I wrote it all in his voice. I said yeah. She's like, "Okay, I need to know that as an editor."

Simon Bonenfant: Wow, so how long did it take you from the time of the interviews to the writing?

Kristen Smedley: It was a few years, because I did all those interviews, and then it was trying to figure out what was the best mechanism to get it out there, and then it was... There was a lot of stuff that happened in my life, and kept getting put on the back burner, and the foundation was really taking off.

Kristen Smedley: If I'm being perfectly honest, one of the biggest issues I had was fear. I was really nervous about; I had never written a book before and I wasn't a writer. I'm very good at speaking and—

Simon Bonenfant: Yes you are.

Kristen Smedley: I'm used to parties and stuff, but writing was one of my least talents on the list growing up, and in my adult life, and I was so nervous about putting a written work out into the world. And then my life just happened that I had to do something, I had to start getting some income, and it was also... This mission just had to get out there. I was meeting way too many moms that were struggling, and I didn't have this resource to hand them yet.

Kristen Smedley: "You know what, Kristin? Get over it. You've got to get over yourself and your fears," and I went and talked to a lot of authors that had similar fears early on. Talked to people that published successful books, listened to a zillion interviews and podcasts, and just went for it.

Simon Bonenfant: Wow. And who are the 12 other people? You mentioned Erik is the 13th person, but who are the 12 other people that you got?

Kristen Smedley: Oh gosh, now I'm going off the top of my head. I'll give you a few highlights and then people can dive into the book.

Kristen Smedley: One that really stuck with me, especially when I was editing and going through some stuff in my life, was Monty Bedwell. Did you ever hear of him?

Simon Bonenfant: No, actually.

Kristen Smedley: He's a good friend of Erik's. He kayaked the Grand Canyon and his book is called 226. That's how many miles are in the Grand Canyon.

Simon Bonenfant: Wow.

Kristen Smedley: But his story... I should mention that half of the people in the book... I didn't intend it this way, but half were born blind, and the other half went blind as adults.

Simon Bonenfant: Oh, that's interesting. That's a good mix, then, I guess.

Kristen Smedley: Right? And I didn't even intend that. But Lonnie is one of the ones that went blind as an adult, and the stuff he went through in his life, and being in the service, and all this stuff, and he goes blind from an accident that was caused by one of his best friends. Total freak accident. And the fact that Lonnie came through that, and his life is incredible now. His whole story, the undertone is loving and forgiveness and friendship and kindness. It got me through so many of the struggles in my own life. I always go back to Lonnie's chapter, and I talk with him every now and again, because he's just a cool, nice guy. He's a single parent, and his stories of how he handled...

Kristen Smedley: It was actually his five-year-old daughter that was the pivotal moment of him handling his blindness. The story's hilarious of him... Let me just tell you, it involved driving a lawn tractor.

Simon Bonenfant: Wow.

Kristen Smedley: And his five-year-old putting her hands on her hips and telling him to get over himself and get on with his life. It's a hilarious story.

Kristen Smedley: But Lonnie, that was a really cool one for me.

Kristen Smedley: Chris Downey is another one that went blind as an adult. He was a very successful architect. Again, had a medical issue that there was something that saved his life, a surgery, caused his blindness, and when he woke up, totally blind. He said everybody came in and took his life away. Even his phone, because they said, "Your life is going to be different now. You're going on disability. You're not working anymore," and he said he had a 10-year-old son at home that he needed to set an example for. He got back to work as an architect within a month of that surgery, and he's more successful now than he was then.

Kristen Smedley: That is a TED Talk that you should watch. Chris Downey on if we would design communities with the blind in mind, how much better those towns would be.

Simon Bonenfant: Very good. Yeah, we could probably put that in the show notes.

Kristen Smedley: Oh, that would be great!

Simon Bonenfant: We have a show notes portion we put that.

Simon Bonenfant: Getting on to TED Talks, you actually did a TED Talk. That's a good segue, right? You did TED Talk?

Kristen Smedley: I did. I did. It was the hardest thing I ever did.

Simon Bonenfant: Wow. What was that about, the TED Talk?

Kristen Smedley: That was about how my perception of blindness changed, and it was from my two boys. Mainly Michael, because he was the first born.

Kristen Smedley: For a long time, I wasn't proud to mention how horrible I was in dealing with the blindness diagnosis. I mean, if you want to see an epic example of how not to handle a blindness diagnosis, that was me.

Kristen Smedley: But Michael changed my perception on that when he was three, and when I finally looked at the situation differently, that's when our journey just exploded into amazingness, and the talk is trying to teach the lesson that if you look at things differently, especially blindness, how much your life can open up.

Simon Bonenfant: I'm sure you learned a lot from the book. What was the biggest takeaway that you learned from all the interviews that you apply to your own life? Because a lot of these stories can apply to anyone, really, not blindness. Just the idea of overcoming obstacles, whatever that is... that means blindness to some people, maybe it's not, maybe it's just in the mind for some people, overcoming fear and things. So what was your biggest takeaway that you apply to your own life from your interviews?

Kristen Smedley: Oh my gosh, you have the greatest questions.

Kristen Smedley: So I could probably talk for hours on this, but I think... I went into this to teach people about changing their perception of blindness, and that was the goal of each interview. But I'm telling you, when I was going through the process... remember I told you it took a couple of years to get it written and everything... every time I was going back to these chapters to rewrite and edit and get them perfect, something was going on in my life.

Kristen Smedley: One of the biggest ones was when I got divorced. And then I was going through and editing these chapters, and I was taking stuff away from them, like Lonnie with forgiveness and friendship, and Diane Berberian is the iron man competitor, and her thing is just finding the fun in everything, and the joy. And her stories, you know, so much happened with her. She went through a divorce, too, and she went through a bunch of stuff, but she made me laugh through the entire interviews, and even when I was editing her chapter.

Kristen Smedley: So I guess it's hard to pinpoint just one thing, but each person gave me a different takeaway, most of them being resilience, and everybody's got something. Everyone has something they struggle with. And even all these people, whether they were blind from birth or came into blindness later in life, they all had a different strength that they found in themselves along their journey somewhere.

Simon Bonenfant: I always find that we could have encouragement from other people having struggled, because we all have struggles in our life. No one's perfect. I always say, "We all have our crosses to carry," and it's true that we all have our cross to bear, and we all have something that's going on, and there's two ways to look at that. We could either get down about that, or we could find encouragement in each other through our sufferings, and turn it into something good if we stand together through that. It sounds like your book promotes that as well.

Kristen Smedley: I love that, Simon. That's... how old are you?

Simon Bonenfant: 17.

Kristen Smedley: Oh my god. That's an incredible way to look at this world, and let's promote that perspective more, because if people would do that, could you imagine? If people would realize everybody's got something going on, and let's see what we can do to help the other person out, that would be an incredible way for things to not be such big things in this world.

Simon Bonenfant: Exactly.

Simon Bonenfant: And going back to the book, when you were doing interviews for the people, did you have a set of questions, or did you kind of make it go as the conversation flowed? How did you end up having a method, too, to where you asked the questions and things?

Kristen Smedley: You know what? I was so nervous about it, because I had never written a book before. So to that point, I had a list of questions, and then I'm like, "Nah, that's stupid. Let's do it this way. Nope. Let's do it this way." And then I was putting off all the interviews because I wanted it to be perfect. So then I'm like, "Okay, here's what I want people to get out of this." I went back to my, when I was trained to be a teacher, a lesson plan. What do they know? What do they need to know? What are the objectives? And how will I know that this will see success to measure it?

Kristen Smedley: So I figured, all right, I want people to know what this person's condition is, what the blindness is. Were they born blind or did they go blind? What are their big tools and resources that are going to be helpful to everybody else to know about? But the biggest thing that I wanted to come out of this, and that's in each chapter, there's a section at the end called The Bright Side, because I didn't want this to be a downer. I didn't want it to be heavy. So I asked every single person... We call them blind perks in our house. Hey, let's face it, when you're at Disney World and they see the cane and they go, "Do you want to go to the front of the line?" We're like, "Yep."

Simon Bonenfant: Yeah, yeah, yeah.

Kristen Smedley: "It's 100 degrees and I'm standing in this line."

Simon Bonenfant: I always do that in the airport with the security. That's a nice little perk, too.

Kristen Smedley: And you know what? There's several people in the book that highlighted the airport as one of the biggest perks, that they just get to be treated like the red carpet.

Kristen Smedley: Do you know Bill McCann?

Simon Bonenfant: Yeah, I know him very well. Yep. [crosstalk]

Kristen Smedley: So he's in the book, and he says that his partner Albert called—

Simon Bonenfant: I know him, too.

Kristen Smedley: Yeah, so Albert calls the cane the parting of the Red Sea. He's like, "Here we go. Stick the cane out," and everybody gets out of the way, especially when they're in a hurry. All that fun stuff.

Kristen Smedley: But yes, I did go through... I had a list of questions. I was still nervous, though. And actually, I talked about Diane Berberian being all about fun. She was my first interview. I was so nervous, and then we got to talking on the phone, and I said, "I'm so happy that you agreed to do this. I'm kind of nervous and all." She goes, "Are you kidding? I was so happy to be invited because the first book I was in, it was about being a failure!" I said, "What?" She had trained for a triathlon and totally messed it up. She was awful. I don't even know if she finished. So somebody wrote a book about what not to do, and she was highlighted in that book. She's like, "I'm so excited that I'm involved in a book with the success word in it."

Kristen Smedley: So then I had the questions and just kind of followed that format, but each of the interviews kind of took on a life of their own, and everyone's personality came through in those chapters. It was cool.

Simon Bonenfant: Very good. That's the way I do my interviews. I don't really come up with a set question. I have obviously a topic that's going to come up, but as the conversation flows, I think up questions in my head and I ask them and answer them and it kind of segues in [inaudible] follow a strict format, it's not a from-the-heart conversation. It's so strict and rigid. It's got to come from the heart, and it's got to be a natural conversation. And those are the best ones.

Kristen Smedley: Yeah.

Simon Bonenfant: That's with podcasting, interviewing, writing, that's really what that's about, is the conversation.

Kristen Smedley: Yeah. Again, your age and being able to do that, because that also takes a lot of... You have a very good talent for listening, then, because you really have to be a good listener to then know what you want to draw out of what that person is saying. That's cool that you can do that at 17.

Simon Bonenfant: Thank you.

Simon Bonenfant: Who is your biggest, or at the time was your biggest supporter when you were writing the book, and who really supported you in saying, "This is something that's going to be good," and supported your effort all the way through?

Kristen Smedley: I'm extremely lucky, and I say it all the time, that I know how blessed I am to have the team that I have, in terms of family, friends and whatnot. I know a lot of people don't have that. Some of it I built through a network and all of that, and some I'm just blessed with, with my parents and I have a really big family, and then my kids.

Kristen Smedley: But I would say, if I had to say who the number one person was, it was my three kids. They thought it was the coolest idea in the world. They knew that it was taking a lot of time and effort to get it together, and there was a lot of nights where they had to just... especially when I was doing the interviews, you know, you can't have anybody bursting in and yelling for something, and they'd have to sit outside and wait for me to finish that. But they had a lot of patience through the journey, but a ton of cheering, and now they're the ones out there helping me at book signings and interviews on Facebook and all that kind of stuff. Mitchell's here taking pictures and video for my social media. I mean, they're part of the book team, the launch team, and Team Kristin Smedley, I guess.

Simon Bonenfant: That's great! I'm sure it's been good for them to see all the blind role models, and luckily they're going to have a network when they get into working. They're going to have a network of great people that they can tap into. And you're going to have that as well. [crosstalk]

Kristen Smedley: Yeah. It's been cool. Of course, I guess they probably don't like it on the days where I'm like, "Really? You're acting lazy today? How about when this one had this issue," and I start quoting the book. They're like, "All right, get away."

Kristen Smedley: Yeah, no, it is cool. They have a very big network of support and inspiration, for sure.

Simon Bonenfant: Good.

Simon Bonenfant: Yeah, I know you have a very big network. I was at your event back in March you did. Will you describe all about that event, and what was that event for? Because I was actually there, and I did a comedy act. I was telling jokes that night. But what was the broad scope of that night?

Kristen Smedley: I'm still getting messages about how fun you were at the event, because we tend to always try to do something a little different than everybody else and you just really enhanced that that night. It was great.

Simon Bonenfant: Oh, thank you.

Kristen Smedley: So that's Cocktails for the Cure, and that is our big launch each year for the Cure Retinal Blindness Foundation. It wasn't actually designed in the beginning to be a fundraiser; it was a celebration of all the work that we've done. It's pretty much a gratitude party where we say thank you to everybody that's helped us, and get everybody geared up to do fundraising and outreach and help us build a network. The model of it has worked tremendously to grow that mission really far, really fast.

Simon Bonenfant: Yeah, I got to meet some good people. I got to meet a friend of yours, [inaudible] that night, who actually was a teacher who taught your son Michael. Me and her got to meet up and talk, and that was great talking to her. I've actually reached out to her since, so she gets a little shout out in the podcast.

Kristen Smedley: She's helping get book signings, too, for me.

Simon Bonenfant: Very good.

Simon Bonenfant: We ask this question a lot. It's sort of like a winding up question here at Blind Abilities. What advice would you give to either parents of blind children who are new to this blind world kind of thing, or blind children, or blind adults themselves who are trying to rebuild? What advice would you want to leave them with, listening to the podcast?

Kristen Smedley: Here's the thing, I don't sugarcoat that diagnosis day. When they're handed something that is not anything that they had ever thought, like blindness, it stinks. When you're first told that you think you're going to have this life plan, and now you got to rethink your whole thing, it kind of stinks.

Kristen Smedley: However, and I would say sit with those feelings for a little while. A lot of times, we say brush the feelings off and keep on going. I would say sit with it, find at least one person that you can talk to about all of your feelings around it, and then of course get Thriving Blind, and take a look at the different people in that book, and I would bet that each person that reads Thriving Blind will find one person, one chapter that is a person that's like them and start there. And then read through the stories where, because you'll see in every story, everybody grappled with that moment when their life changed, and then how they moved on.

Kristen Smedley: The biggest piece of advice, though, is besides changing your perception and your attitude and your mindset, is get the tools that you need. You can have all the positive thinking in the world and all the role models and everybody cheering you on, but let's be honest. If you're a blind person in this world and don't know the tools of mobility and independence, like the cane or a guide dog, or literacy with Braille—

Simon Bonenfant: And technology.

Kristen Smedley: And audio, and technology, if you don't learn those things... Even if you're scared. I hated the words "Braille" and "cane" when I first was on this journey, because they meant my life was looking different. A lot of people go through that.

Kristen Smedley: Once we embrace those, that's where it was Braille that Michael and Mitchell could sit in their school classrooms right alongside everybody and not only beat that 70%... they were expected to achieve a 70%... they not only blew that 70% out of the water... Michael was the class speaker at graduation, and stood up there surpassing everybody. That was Braille, that was confidence, and that was pushing the limits of what people expect you to.

Kristen Smedley: I would say the number one thing is get those darn tools of what it is you need to succeed.

Simon Bonenfant: Very good.

Simon Bonenfant: I'm sure you've had to deal with people saying that your children could not do something. When someone said that to you, did you rise to the challenge? And what did you make sure that you did so that they would be able to do it?

Kristen Smedley: I researched it, honestly, and I'll tell you a funny story real quick, if we have time. When they said at the kindergarten IEP meeting that Michael would only find his cubby... you know, the thing where you hang the jacket in? The hook?

Simon Bonenfant: Yeah.

Kristen Smedley: They said he would only find his cubby 70% of the time, that meant success because he was blind. And I said, "Hold on a minute." And we moved to a really nice school district, and I had been out of the classroom for years, and I knew that there was new technologies. I said, "Hold on a minute. The cubby. Does it move every day? Do cubbies move now? Or are they still the hook on the little closety thing?" I'm thinking maybe they circulate around the school or something, and they'd never be able to find it when they're blind. They're like, "No, it's attached to the wall."

Kristen Smedley: So my question became, "What's expected of the sighted kids in this classroom? If the sighted kids are expected to find their cubby every day 100% of the time, Michael is expected the same," and they said, "You can't do that because he's blind." I said, "If he's missing it 30% of the time, then we're not doing our job, because that's an easy one."

Simon Bonenfant: Yeah.

Kristen Smedley: It's not driving a car. It's not looking across a room and seeing something. It's doing what other people do that really does not require vision. There's other ways to do it. So that was the mentality.

Kristen Smedley: And honestly, I told you that it was right after that when I said that the principal took the IEP team to see Erik Weihenmayer. That sealed the deal for them that Michael could do all of that. So that was a game-changer for us.

Simon Bonenfant: And I'm sure you've probably impacted countless other people who maybe wouldn't have their expectations changed about blindness, and when they met you, probably even raised their expectations for themselves and the sighted people around them as well.

Kristen Smedley: Yeah. You know what? I just did a keynote for the Association for Clinical Research Professionals down in Nashville, and my one-hour speech was about setting extraordinary expectations and how I had to do that for Michael and Mitchell, and look where they are now. And usually people come up to me after my speeches and say, "You're such a great mom." Which is wonderful, everybody wants to hear that. This time, though, people said, "You just changed my life." And it had nothing to do with blindness. It was more what they're dealing with in their own lives, opening up their minds, changing their perception of it, and expecting a different journey than everyone anticipated for themselves. It's cool.

Simon Bonenfant: Good.

Simon Bonenfant: If someone wanted to find you on social media, what would they need to look up for you?

Kristen Smedley: So first of all, when you say "Kristin Smedley" and "social media", all three of my children will roll their eyes at the same time because they're just thrilled that I'm on there and their friends follow me now, too. Karissa gets so mad. She's 14. She gets so mad when her friends comment on my posts. It's hilarious.

Kristen Smedley: But anyway, my main ones are, on Facebook we have a Thriving Blind community, and it's just Facebook.com/thrivingblind. That's where you can follow stories of Michael and Mitchell, and now videos of the people in the book and then some. On Twitter, I'm @KristinSmedley. Same on Instagram, although Instagram is driving me crazy. I keep trying to learn it and it keeps surpassing me, but whatever.

Kristen Smedley: Linkd.in is my big one now. Linkd.in has a lot of connections on there.

Simon Bonenfant: Good. I always thought you do some Facebook live.

Kristen Smedley: Oh man, Facebook live is a cool tool, man, because Facebook loves to push out that content, because it's their platform only.

Kristen Smedley: Actually, Mitchell is my big Facebook liver. He does, on Thriving Blind, tech Tuesdays where he just highlights the technology that he's using. And the funny thing is, half the audience is moms and dads of blind kiddos that are watching it together to know what they should be asking for in their IEPs, but the other half is the sighted community. It just loves finding out this information, because they had no idea.

Kristen Smedley: Did you see that campaign that went around about the blind people using phones? Somebody had an attitude, they put some negative things... "That woman must be faking being blind. She's got a cane and she's looking at an iPhone."

Simon Bonenfant: Oh wow.

Kristen Smedley: So then they were trying to do this whole educational piece to combat that of blind people do use phones. Well here on our little Thriving Blind community thing on Facebook, we're showing people every week the different things and how you use the phone and Braille and all that, so it's pretty cool.

Simon Bonenfant: Oh yeah, technology has been a very, very big effort for the blind community. Well, for the sighted community, but also for the blind community in general, just open up a wide range of doors for us.

Kristen Smedley: Oh, it's huge. And you know, did you ever meet Tom Lukowski at Comcast?

Simon Bonenfant: No.

Kristen Smedley: We'll have to get you guys together. He's right at Comcast in the city. He's their head of accessibility.

Simon Bonenfant: I've heard about him, actually [crosstalk]

Kristen Smedley: Yeah, he's cool. He's in the book, too. He actually, I think he went to college with Erik. And they were completely different, it's pretty funny.

Kristen Smedley: His thing is, because he helped develop that X1 on Comcast where you talk into the remote, so his thing is don't build a technology product for the blind. Build it with all abilities and disabilities in mind, one product for everybody, and how that is such a positive impact on everybody is huge. Just like the X1. I mean, Karissa and I use that in our house and we can see just fine, but we're always yelling into that remote to change channels.

Simon Bonenfant: Yeah. That's a nice feature. Comcast have always done a lot of good stuff.

Simon Bonenfant: Yeah, and if someone wanted to buy your book, what formats do you have available, and where could someone find it, and what's the price and all that?

Kristen Smedley: So right now on the print, the paperback and Kindle version are on Amazon, and a little plug for ourselves here, we hit #1 new release for both of those when they came out. They're on Amazon. Just search "Thriving Blind" on Amazon. Large print will be available, as of the recording of this interview, it'll be available in a week on Amazon. Then the super cool one that was one of the reasons that I started this whole journey in a book is the electronic Braille. That's coming out in, actually, while we're recording this, it'll be out in I think two weeks. And we have a whole team of blind youth around the country that are going to be doing a social media campaign that'll be really cool to follow on Thriving Blind on Facebook.

Kristen Smedley: The e-Braille, the BRF file for that, was made possible by the CEO of T-Mobile, donated the money to National Braille Press to have that made.

Simon Bonenfant: That's great. And the time of this recording, for the folks who would like to know, is May 4th today.

Kristen Smedley: Hey, May the 4th be with you.

Simon Bonenfant: Yeah, there you go. May 4th, 2019. So for those who are interested in getting the Braille version, that should be out in about two weeks.

Kristen Smedley: And that'll be available at kristinsmedley.com.

Simon Bonenfant: Oh good. So once this podcast is published, it'll be up there on the website so everybody can go grab it. All the Braille readers. That's great.

Simon Bonenfant: Well Kristin, you're a very inspiring person, very inspiring advocate for the blind, and I truly want to thank you for the work that you do. Keep up the great work, because you are very inspiring and I know that your work is going to live on hopefully long past you.

Kristen Smedley: Wow. Well thanks, Simon, and right back at you, dude. You've got some great stuff going on. It's fun to follow you.

Simon Bonenfant: Oh, thank you very much.

Simon Bonenfant: Well this is it. Reporting for Blind Abilities again, I'm Simon Bonenfant.

Jeff Thompson: Be sure to check out the book Thriving Blind on Amazon and kristinsmedley.com.

Jeff Thompson: Such a great job by Simon Bonenfant on doing this interview, and thank you so much to Kristin Smedley for sharing with all our listeners your story, your book, your experiences, and your passion.

Jeff Thompson: A big shout out to Chee Chau for his beautiful music. You can follow Chee Chau on Twitter @LCheeChau.

Jeff Thompson: I want to thank you all for listening. We hope you enjoyed. And until next time, bye-bye.

[Music] [Transition noise] -When we share

-What we see

-Through each other's eyes...

[Multiple voices overlapping, in unison, to form a single sentence]

...We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.

Jeff Thompson:

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Thanks for listening.

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