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June 30, 2021
Transcription is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
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>> Welcome to the AccessAbility Works podcast.
>> The podcast about the possibilities of accessibility for people with disabilities. I’m Albert Rizzi.
>> And I’m Jonathan Hermus.
>> And this is AccessAbility Works podcast.
>> We’re coming to you today from our temporary recording studio in Atriella [phonetic] on the front lawn of our home that’s under construction. So you’ll hear a little bit of background noise. I apologize for that now. But the birds will be singing. Cars will be vrooming. And there might even be a truck coming by to pick up garbage or people sanding and drilling and banging away.
>> If it’s too loud, we can stop and let the noise go away.
>> If it’s too loud, we might stop and let the sound go away. Today we’ll be meeting Kristin Smedley. Kristin is a mother of two, actually three. But two people from the Blind Community. Lightning struck twice in a very, very good way. And Kristin took the time to immerse herself into the way her children would be seeing and processing information as they grew up and turned that into a driving force for advocacy and has a few organizations that are really making a difference in the Disability Community specifically with regard to the Blind Community.
>> She’s the author of a book called “Thriving Blind: Stories of Real People Succeeding Without Sight.” She is the founder of the Thriving Blind movement. And she is the co-founder of Brilliantly Resilient. I think you talked about her children. They are Michael, Mitchell and Carrisa. Michael and Mitchell are her two blind children.
>> Yes, she’s definitely a person who got these boys to understand my favorite Chinese proverb, the person who says it cannot be done needs to get out of the way of the person doing it. And these boys are doing it in spades. So I’m looking forward to have you hear all about Kristin and her children and the fantastic work that she’s been doing to promote inclusion for people who happen to be blind or visually impaired.
>> She also did a very inspirational TEDx Talk in 2017.
>> That was a really great one. Up and coming things that we’re doing right now. We have a blog coming out about school and the pandemic and how it’s impacted distance and remote learning as well as work-from-home opportunities. And we’re hoping to see our nation really focus in on digital equity for people of all abilities as it relates to academic enrichment and hopefully employment for people with disabilities.
We would much rather be independent taxpayers than tax dependents. And at last count I think we have a significant number of Americans who have been given a shot in the arm. The pandemic seems to be on the retreat. We’re starting to see a big uptick in social interactions and people being able to go back out to work in the offices, restaurants. John and I just got back from a fantastic weekend with Jay Cardinali and his wife Kathy. Jay used to be the head of the Accessibility Division at Disney global and is now heading up the seventh largest school district in the country down in Florida. So it was great seeing him and catching up with him and Kathy. He might be joining us, too, so look for Jay in a podcast in the coming months.
>> Without any further ado here is Kristin Smedley.
>> Hey, Kristin, how is it going today?
>> How is it going? Great to be here.
>> We would like to hear a little bit who you are. Your background. How you got into advocacy work. Who is Kristin Smedley?
>> Well, to be very brief, which is not my strong suit, I can tell you this, Kristin Smedley, up until 21 years ago, was the kind of person that made a list of goals. And an action plan to achieve them and was thrilled to check off all of those goals constantly.
I had planned my entire life that way. I knew from the time I was about five years old I was going to be a teacher. And then suddenly have found myself for the past 21 years an accidental everything.
Nothing went according to plan. Although I will say, I did get the — I went to school to be a teacher. I hit the graduation. You know, landed the job. Married the husband. Had the big wedding. Had the McMansion, the new SUV and all of the plans at that point came to fruition. But I’ll say this, too. As much as I’m a planner, my whole life I had this one big dream. And that was to be a mom. And I think it’s because I had such a great role model for a mom and grandmom. I had really great women around me so I dreamt much when I would get to do that. And finally on January 29th in the year 2000 as everybody in the world was breathing a sigh of relief that all of the computers were still working because Y2K we were supposed to blow up.
>> Remember that?
>> You know, my firstborn son arrived. And my dream of being a mom had finally come true. And I got to tell you, I was the happiest mom on the planet.
And then about four and a half months later, a doctor said to me, your son is blind. And I had no idea that that was the case. And I had no plans for that. I had no checklist for that. And I had no guideline or even one sentence of guidance of what to do when that happened. That’s why I do all the work that I do now that we can dive into later.
>> So two things. One, where did you get your degree in education from?
>> I grew up in the Philly area where I still am now and it was West Chester University.
>> Okay. And what is this gentleman’s name who was born on January 29th, a number of birthdays I celebrate with friends of mine? What’s your son’s name?
>> Michael. And I guess listening to you talk about somebody who planned and had charts and courses and a course for success, how did that wrinkle your plans? Or did it?
>> Well, I got to tell you, when you’re a planner and have your whole life laid out in front of you in terms of what you’re going to do, it threw me for a loop. And I’ll say this, also, for those of you that are listening that have carried a baby for nine months or have been quite close to somebody doing that, as that belly grows and the baby is growing inside, for me, my hopes and dreams for him were growing. You know, you start out in the beginning of the “What to Expect When You’re Expecting” book in Chapter 1. And you’re just looking for getting to Chapter 2.
And you’re hoping for a healthy baby. And you’re hoping for a healthy pregnancy. And if you’re like me, by the time the ninth month hit, I had him like, are we going to be on the Phillies or the Eagles? Do I have a starting pitcher or starting quarterback?
>> Oh, I thought would have said, get out now. Mommy is ready.
>> Well, that comes about the nine and a half point. Like, let’s go.
>> But yeah, I was envisioning this massive life for him. And I was envisioning him up on stage as the Valedictorian. And watching across the college stage as summa cum laude. I guess we moms go off on wild tangents of our dreams. But I just had these massive dreams for him. And when that doctor said, your son is blind. I’m not exactly proud of this now. But now that you know a little bit about me, where my mind goes, my first question was, will he play baseball? Who says that?
>> Whoa. My mom’s first question after I was born was, who won the fight? She was watching Cassius Clay and Sonny Liston fight that night. She woke up. She didn’t care whether she had a son or daughter. She woke up and was like, who won the fight?
>> Oh, my God.
>> So I can understand that and I think I appreciate that. And I want to thank you for being really raw and honest about that. Because I think there’s a lot to be gained from expectations or setting expectations that were unfulfilled. And maybe going into things without an expectation. And everything works out. Everything has a purpose and a reason under heaven. There’s a song somewhere in there.
So you heard your son was blind. Your whole world came crashing in. You didn’t know what to do. And same shirt, different pew, I was the first blind person I had ever met. I found I’m wondering how you found this as a parent who would have and probably still does put their children first above all else. Doctors don’t know what to do with people who are blind. They know how to prevent the onset of blindness. But once you’ve achieved that end game of being blind, they are like, good luck. See you later. And there’s no information out there for people like me that’s readily available. Because it’s always a secret. And you have to go on this quest. This journey to find the answers to your problem.
So with being a parent, having read all those books, you know, all of those parenting books, there was nothing in there to prepare you for the realization that your son was not quote-unqoute perfect.
>> Yeah, you’re exactly right. And you mentioned the words good luck. That’s what the doctor said to me.
>> And I have to remind everybody that this was the year 2000. That was 21 years ago. There was no, oh, go Google it. There was nothing. There was no Facebook. There was nothing to connect with people. So you know the doctor says, good luck. And sends me home. And what do you do when you’re a planner and you have all of these hopes and dreams? When you’re me, you sit on the couch and you cry. Because that gets you far.
>> But you know, I’ll tell you what, you’re right. For me, the — Michael was the first blind person I had ever met. And I know now that that was one of the biggest contributing factors to the fact that I had these expectations that were zero. And I had the devastation pit. Because I didn’t know what was possible.
What I did know was that show “Little House on the Prairie”, where the daughter woke up blind and they shipped her off.
>> Mary. But you know, up until the ’90s — actually ’70s, early ’80s, they were still institutionalizing people who were blind and putting them in special schools, special living environments. And I do remember that “Little House on the Prairie” scene. Like where did they send Mary? Remember they put the strings all over the farm so she could move from the barn to the house, the house to the well and all of that stuff? And then there was a guy named Albert there, too. He was kind of cute. Remember that?
>> Wasn’t that her boyfriend?
>> No, I think that was Laura’s boyfriend.
>> Oh, yeah.
>> They grew up being best friends and all of a sudden there was this love interest in some season or something.
>> We can go off on wild tangents together.
>> Oh, you’re right. That’s the beauty of an AccessAbility Works podcast, we go all over the place and come right back to center.
And those are the influences we had. We were given the sense that low expectation. Your child is never going to realize opportunity. He’s going to be or she’s going to be, you know, coddled and we have to put them in a bubble.
So here is somebody who plans and I am sorry, the thing I have learned about you is you take no prisoners. The minute you have your eyes set on something, your goals, you’re like, I’m going to make this shit happen.
>> So here you are. New mother. Fairly new teacher. What grade were you teaching?
>> I had been teaching 3rd Grade. And stopped to move to Chicago and work for the Department of Ed to teach teachers how to teach well. That’s what I was doing.
>> They need that so badly.
>> To learn how to use the internet. This thing called the internet. That’s how long ago.
>> Do you remember? I remember going to college in the ’80s and having to use an electric typewriter. I don’t think I owned a computer or even understood what a search engine was until the late ’90s, mid ’90s.
>> Neither did I. We had to go to computer labs on campus. Right?
>> It was crazy. And today — I remember being told when I was a kid, if you don’t hear me whistle you’re too far away and if you’re not home by the time the streetlights come on, your ass is grass. So we didn’t have cell phones. We didn’t have all of those things. It’s so interesting no matter where I am, I can’t even lie and say, I didn’t have my phone with me. It’s attached to my hip. Sorry, Mom, that’s the truth. I just didn’t want to talk to you.
>> So here you are. A teacher. And now you’re teaching teachers. So you were already in this leadership role about empowering people to greatness by giving them the tools they need to succeed. And then it lands right there in your lap.
>> Then it lands right in my lap. And for all of you that are envisioning what I was as a leader and might know me know and my story of what I do as a leader, this is why I am not proud to say that for years I sat and cried. That’s how I handled it. Nowhere to go. Nowhere to turn.
But here is the thing I will also admit about myself now. I sat and cried because I was pissed.
>> I get that.
>> It wasn’t because I didn’t have the skills to go out and find out what my son and I needed. I was furious.
>> Again, to same sense of same church, different pew. I was going through that this morning —
>> Stop laughing at me, man. He’s sitting over here. He was about to kill me this morning. I get extremely angry. I get pissed off. I am glad John has removed all of the baseball bats from our house. Because our technologies would be smashed within seconds.
You know, when you aren’t able to quote-unqoute fix things in the normal fashion or proceed under what, you know, traditional norms require. And you can’t adapt or assimilate through no choice of your own.
>> And I’m drawing that to you as a parent. You know, you had to adapt to something that no other parent was up against. And then you had to listen to their sympathetic, oh, wow, he’s such an inspiration. What a great mom you must be.
>> Hey, this is the kid I got. This is the kid I love. My kid is going to be fantastic. And you did such a good job at raising one child. What happened with the second?
>> Well, lo and behold, you know, then the second one — here is the thing, you guys. I was actually a math major when I started college, right? And then I was like, wow, that’s a lot of work. Let me switch over and do something else.
>> But I didn’t want to use my brain that often. So when Michael was diagnosed with Leber’s congenital amaurosis, they said to me, you have a 25% chance having a child with this. Because of the mom and dad being the carriers. So at first I heard, oh, 25%. Like 1 in 4. Like I can have four kids, and one of them, I already won the prize and the rest will be good.
>> Knocked it out of the park the first time at bat.
>> I’m like, I am quite the achiever, aren’t I? Give me the award. Then I’m like, oh, wait a minute. With everyone pregnancy, there’s a 25% chance.
>> That’s how mathematics work.
>> That’s when it starts rattle through your brain and it’s like, oh.
>> That’s how it works, I know.
>> My college statistics had been like, duh, I had try to tell you this. So then I’m sitting there thinking, here is the thing, math major, looking at statistics. Okay. However, what always trumps the Statistics Kristin is the Delirious Optimist Kristin. So Delirious Optimist Kristin shows up and says, are you kidding me, 75% is way bigger than 25%. I got this. Watch me. You know.
>> So —
>> I’m sorry.
>> Yeah, then I — well, I’ll tell you this quick story, if we have time for it. I guess it was about seven and a halfish months that I was pregnant with my second child. Michael is now three and a half years old. I’ve been three and a half years praying blindness away all day, all night. Walking into Michael’s little bedroom every morning. Seeing him blind. Getting pissed off. God sucks. You know, rinse, repeat. Do it all over again for three and a half years.
Now, I’m seven and a half months into this pregnancy with my second child. And I wake up one morning. And Delirious Optimist Kristin was there all the time. And all of a sudden the one morning the mathematician woke up and was like, what are you thinking, 25% is huge and you’re faking your way through this first one. I was smiling all day. Crying all night. I was so pathetic.
And then I decided, well, who is responsible for this? That would be God. So he got the anger unraveling.
>> That stage.
>> Yeah. I just let him have it that morning. I’m like, what is the matter with you that I would even have to be sitting here worried that I would have a second one. I’m just about able to bear the burden of this first one that you screwed up with my life. I did everything right. I did everything right.
I was the one — I have four brothers. They are all nuts. But I was the one in church on Sunday that was, you know, not wrinkled. And I was there on time. Like I went through this whole thing, right? And I was a mess. I was a complete mess. I was so mad.
And all of a sudden as I’m at my biggest, ugliest cry that you could every imagine —
>> Mascara running down your face.
>> Yeah, my Michael comes bouncing into my room. Michael to this day does not walk. He has this little bounce in his step.
>> Oh, my gosh. And it’s always like this rhythm. He’s a musician and everything. He comes bouncing in. He was small for his age. He had these little round I call them the Jerry McGuire glasses, that’s what all little kids had back then. I’m looking at him and he’s maybe a foot away from me and he says, Mommy, are you in here? And I thought, are you kidding me? Like could you sucker punch my heart one more time that he can’t even see me a foot away.
I said, Michael, you know, Mommy is right here, what’s the matter? He said, Mommy, isn’t this the best day ever? And I thought — like all this stuff starts racing through my mind. Like, you have no idea what you’re missing in life. You have no idea how hard this is going to be.
You have no idea. You have no idea.
And I said to him, Michael, why? Why would you think that this is the best day? He said, well, the sun is up. And I have all my toys. And I’m just so happy.
>> I love him.
>> And he had this bright ass smile on his face. Like there’s no other way to describe it.
>> And here is the thing he spins around and goes back to his day, right? And I thought, oh, my God. Michael was like that from the moment he was born. Everything to him was an exciting adventure. There wasn’t even the glass half full. It was —
>> It was something magical. Everything. And people were drawn to him because of this nonstop happiness and figuring things out. And he had figured out everything. He even had the teachers at the preschool called me in. And said, we don’t think he’s blind.
>> Because he’s doing everything. What doctor did you go to? That’s what they said.
>> Oh, my God.
>> Yeah, everybody knows. Right? So here is what I learned in that moment and this is what has guided me now for 21 years — I only slip up every now and again. But I said I had prayed blindness away every single day for three and a half years. And in that moment, my prayer was answered. Blindness was taken away but it was —
>> Your blindness.
>> My blindness.
>> Like literally I had this massive blind spot that I was looking at the door of what I wanted for Michael. And banging on that. And I was missing the door that he had gone through to his own dreams. His own purpose.
>> Independently motivated to make his life work under the conditions and terms he was born into.
>> Yeah. I mean, you know, this is what I say now. It’s taken me 20 years. Because I just — I honestly just came to this realization last year. I’ve told this story I don’t even know how many times about my curing my blindness and all. I thought for 20 years that that moment was about me getting my blind child all the tools he needed. That’s what was my awakening. It isn’t. It’s what made me be the mom that I dreamt of being. Because what I did was all of my hopes and dreams for Michael was extinguished. So my Michael and all my kids after him have never had to live under the weight of their mom’s plan for them.
They got to do their own thing. And they have soared their entire lives because of that.
And that’s the message that I want parents to know in all of this. And in all of my stories. And all of my lessons. I believe we have so many problems with young people of today. And families struggle. Because in all the love in the world, we put our hopes and dreams on our kids.
>> We want what’s great for them. We see their unique gifts and talents. But we don’t really see them through the lens we’re supposed to. And if we would take our stuff off of them and just follow — I always say that, you know, I’m their sighted guide. But I really am just their guide. I get them what they need. And follow their lead. All my kids.
>> They tend to be — it sounds like he’s your spiritual Sherpa. He’s the one showing you how to traverse the mountains and the barriers in front of you. And I love you. I just think this is great.
My dad, early on as a teenager, I would always get upset because I expected my friends to be a certain way and this and that. And my parents never really had lived through either myself or my brother vicariously. As some parents do. You have these expectations of the child following behind in your footsteps. Having your same jersey number in the sport that you played. Or being the same type of person. Doing things you couldn’t do. Taking it to the next level.
But Michael was a gift, as you said, he removed your blinders to the limitations that you imposed on him. Because of the way he saw.
>> And that story about how he came bounding into the room helped you realize that the small shit doesn’t matter and the big shit doesn’t matter. What matters is the day in front of you. The sunshine on your face. That big ass smile he had. And the toys that he had at that moment and helped you come out of your doldrums, come out of your pity party.
You and I know Kirk Adams.
>> And I don’t know that you’ve had the chance to meet or become aware of or know John Kemp. But Kirk, as you know, lost his eyesight very early on. I think four or five years old. And his parents didn’t coddle him. Instead they gave him the tools that he needs to succeed.
John Kemp was born without arms and legs. Basically below the elbow and below the knee. And his parents gave him the tools that he needed to succeed. And after falling into this community through no choice of my own, I have come to appreciate a universal truth. And Michael lives that every day.
If we have access to the right tools, we can promote our own independence. And thereby create infinite possibilities in our lives. And Michael taught you about that.
>> Absolutely. That’s why I do the work I do. Here is the thing, I guess I should back up and catch everybody up that once my second child was born, Mitch was diagnosed with the exact same blindness as Michael.
>> Sorry for laughing but I was just thinking, the poor second child, we went right over him. Typical parent. The first one is all encompassing we don’t talk about the second or third. Yeah, Mitchell has the same condition. Go ahead, sorry.
>> Yeah, so I always say to people, look, I don’t have a Doctorate degree. But I have two kids — I have three kids total. But I have two kids blind that could not be more different but I know the things that are the through-line are the same. And access is the through-line that is the same that has gotten Michael to the top 1% of 75,000 undergrad students at Penn State and Mitch the top 3% of all of the seniors in the United States for the SAT scores. Chasing their dreams. Albeit insanely different. The two of them. But it has been access to the tools that they needed.
Access to literacy. Access to assistive technology. Access to people and places. And everything. It all comes down to access.
>> Access to falling down. Getting a bruise. And climbing a tree and doing things.
>> Learning from mistakes.
>> Running from? Running from anything.
>> Learning from mistakes. Learning from mistakes.
>> Learning from mistakes. I thought you said running from mistakes.
>> I have a lot of experience learning from mistakes.
>> Yeah, don’t we all? We are the smarter ones who learn from our mistakes. I mean, I have gotten my kids access to everything. And Michael is out there now in the world doing it himself. But there is one thing, and I’m certain that my boys want this story to be told that I did block them to have access to. And they had come to me once when they were probably nine and six. And they said — maybe a little bit older. And they said, we want to play ice hockey. And I said no.
>> That has nothing to do with being blind.
>> Don’t judge me on that one.
>> Who wants a spike in their brain or a complete, whatever they call them.
>> We already have visits —
>> A stick to the face.
>> To the emergency room because of hockey. I was like wait a minute. Ice hockey. I said no. And they gave me this whole big speech about, you told us that no matter what you would help us figure out everything we would try to do. And you’re going back on your word. And you’re an advocate but you’re not — they gave me this whole big thing. And I was like uh-huh, uh-huh.
>> Out of the mouths of babes.
>> I said, let me ask you this, anybody here know how to ice skate? And they were like, no, we don’t. No ice hockey for you.
>> No ice hockey for you. And then you had a third child, a little girl named?
>> I like that name.
>> How much younger is she than Mitchell?
>> She is only 13 months younger. I do not recommend that to anybody who is listening.
>> Oh, please. People who have those Irish twins, just shoot me. That qualifies.
>> But does she ever run around saying, haha, I can see and you can’t? Does she ever tease them? I’m curious. I totally would have if I was their sibling.
>> Well, not in that sense. But I will say — I can tell you two things about Carissa. She’s actually one of the greatest humans you could ever meet. And when she was about six, seven months old, I think it’s actually in Mitchell’s retinal specialist record when I was telling the doctor, I knew Mitchell’s visual field. Because he had all of these — the pacifiers, we called them binkies, he had them all the time. And he was so dependent on them. And at seven months old Carissa figured out how dependent he was. And she as this little baby with a big smile on her face would sit there and hold the binky and knew exactly where he could see it and not see it and how far away it had to be. It was a game to her. He would be reaching to her. Baby, give me the binky. She thought it was hilarious. But there was a point — so you know, there’s two of them. One of me. And then Carissa, who was so little. And it always ended up she would end up guiding one and I would guide the other. And she always ended up with Mitchell. Sibling rivalry is alive and well in my home.
>> Yes, blind kids can be the jerk big brothers, too, thank you very much. And Mitch would just be on her. You know, oh, you smell. Oh, you’re ugly. Like a typical brother. And she would be walking him, guiding him. Because God forbid he use his cane at this point. I thought, you’re so dumb, dude. She’s guiding you. She’s going to guide you right off a cliff. But she would be walking him. And then he would nail the doorjamb going between rooms.
>> Oops, sorry.
>> Oh, I’m so dumb and I smell so bad. I forgot to tell you that the door was there.
>> Good for her. John does that to me every once in a while. I’m sorry; I didn’t see that wall coming up in front of us.
>> Not on purpose.
>> They find their ways to get back to you.
>> I’m just an idiot.
>> You’re not an idiot. And going back to your faith, as is all too often the truth, as I suspect it will be for millennia, did you ever stop to think that God was punishing you for some indiscretion you weren’t aware of? That you got punished with these two children who were less than perfect than other peoples’ eyes. Did you ever wrestle with that?
>> I wrestled with it but I never saw it as punishment.
>> What I struggled with was the whole concept of God in air quotes beliefs people with certain challenges to be the conduit to show miracles and all of that. That drove me nearly out of my mind.
>> Like why — that’s when I was in the why? Why would you pick this family? We had enough struggles going on. Why would you do this to them?
>> God thinks you’re strong enough. Too freaking bad. I don’t think so. And I wasn’t asked to consider the strength that I had to deal with this shit.
>> Yeah and quite frankly I was questioning the fact if he was even smart. Because I’m like, you’ve known me for 28 years. What the hell did you do this for? You know I can’t handle something like this. Like I guess God is a big old dope. That’s not very nice. Don’t make that the clip that you use.
>> No, I agree with you. And I’m sure that you will agree with me because I can hear it in your voice, I can hear it in your spirit. I look at the way that I see as a gift. Because I’ve never seen more clearly in my entire life. My mother included. She was like I would crawl up into a fetal position and wait for death. Well, that’s not who I was before that. And that’s not who I am going to die after this. I’m going to be somebody who takes life by the cahonies, that’s a word we can say. And live it to its fullest.
The past few years have been exemplary of that. I have a motorcycle now with a side car. John won’t let me drive it yet. We have a kayak. We have bicycles. We go camping. My parents when I told them we went camping in the woods, no electricity, no running water. I told him, hey, Dad, I’m going camping. What hotel? No, real we’re camping.
Meanwhile we’ve had a child property since I was a child up in the Adirondacks and I did like it until I realized I needed a hotel and a blow dryer to go camping.
>> I had not done it since I was 17 or 18. But you know, the world is a smorgasbord and most poor bastards are starving to death. Thank you, Auntie Mame. And it sounds like he Michael and Mitchell —
>> I was going through that name of the little deer in — Clarice. I knew it wasn’t that. I had to do word associations in my head. Have exemplified in the short time they’ve been on this planet they have not only impacted the way you live your life and the way your spirit embraces life but they have also probably touched the lives of everyone else they have come in contact with.
>> Oh, yes, absolutely. The impact that all three of them have had individually and together on our community and people that they have met is extraordinary. And you know, it’s interesting. I often use the word extraordinary because that’s what I say that I’ve set the expectation of being extraordinary. Which if you look up the definition is outside of what is typical.
>> That’s all that means.
>> Yeah, extra ordinary.
>> And typically people would have expected and absolutely would have given me a pass at life to be angry and sad. And that’s just not the delirious optimist that I was born to be. And that’s not what I wanted my children to be. Do we have those days? Absolutely.
>> Oh, without a doubt.
>> I think that’s just part of being human and I had to give myself some grace and realize as much as we have accomplished and as I sit here and watch all of the accolades and things that they have, why would I ever have a bad day? Well, because I’m human and think of all of the stuff that could go wrong.
To get back to the blindness being a blessing, I actually don’t even see it as a blessing or not anymore. I feel like it’s just —
>> It’s a way of life.
>> It is what it is. It’s totally what it is.
>> That’s one of the things when we were talking to Kirk or John, being the person or the child like Mitch and Michael are and living what they lived through is very different than what the parent lives through. I think if I sat down with John Kemp’s parents and Kirk’s parents, we would find that they pretty much had the same exact experience that you did. And I think John is in his 70s, Craig is in his 60s.
What a sad commentary on the lack of progress as it relates to the inclusion of ability alongside race, gender, orientation and religion in our social and corporate cultures.
>> Uh-huh. You’re singing my song.
>> I know.
>> That’s actually why I —
>> You’re singing my song. I’m going to stop right now. Show Tunes.
>> That’s what I get fired up about now because that’s all it is, is access is the issue. And we’re not making enough noise and demanding it.
>> And I think the Blind Community, I’m going to get backlashes, tend to be their own worst enemies. There’s a lot of segregation and fragmentation amongst the Disability Community in general in my opinion. And when I started advocating for digital equity, it was because of what was taken away from me.
When I started talking about authentic inclusion, it was based upon the fact that I had many, many friends who were African American, Latinos, women, and being a member of the LGBT community, you understand what discrimination feels like. And what inclusion feels like. And how the differences that people use to define us sort of overshadow the similarities we have in common that unite us.
And I do a lot of I would say strength as I reflected back on the Civil Rights Movement. And it is now time for the people from the Disability Community to unite as one voice. Because the types of inclusion we argue for, the types of digital equity we need in order to have access to gainful employment, education, recreation and life in general have been ever evasive because they look at a handful of blind people. And depending on who you ask. And what you’re doing with the statistical data to massage it for a grant or some other underlying purpose, we either have 25 million severely visually impaired people of all ages. Or we have 2.2 million people who happen to be totally blind like me.
We don’t take a look at those people on the cusp of becoming legally blind. And the one thing that I think we all miss, as members of the Disability Community, is the assistive devices that we use, the technologies that we use across the board, if coded for a blind person, solve the ills for 90% of the general population as well as the entire population of people with disabilities as it relates to consuming digitalized information.
>> We can definitely keep going on about the case. I think it’s fantastic. I’m sure they will be using this against you when they hear it. But they are lucky to have you and you’re lucky to have them. And there seems to be a lot of positive growth in the experiences that would have crippled other people and set them into some depressive place where they would have never come out of. So kudos.
But you didn’t take this lying down. You did in the beginning because you were lying and crying and pity partying all the time. But that’s normal. Going through the grieving process is an important part of coming out the other end and being the Kristin Smedley who takes no prisoners.
So you have dealt with your two children who have challenged you to reconsider your goals and create a new direction from the leadership teaching plans you had for yourself.
What have you done and what are you doing as it relates to access and inclusion today?
>> I figured this out. I got the kids the education and access that they needed. And then I kept hearing about this 70% unemployment rate, 70% unemployment rate in this community. And I thought, come on. Something is not right here. That I’m watching my boys run circles around everyone in town. Little side note, Michael did end up achieving that dream of Valedictorian, he was the Valedictorian of 600 kids in his class.
>> Right? It’s like how could this be that there’s this unemployment rate? Well, don’t my boys get hit by that fact. They are part of that percentage during 2020 they both had gone for jobs and both were denied simply because of blindness.
So I’m like — they go, Mom, don’t be taking any naps any time soon, we’ve got some work to do with the employment community, right? So I’ve got to address that. But here is what I realize, I’ve hooked up with the woman who helped me produce my TEDTalk and another person from the Cleveland Sight Center. We’re working on a short film. I want to flip that whole perception of hiring blind folks on its head. I actually wrote out an outline for a TEDTalk to do with a friend before the world shut down. He’s sighted. He called me and he goes, wow, Kristin, I feel like if I don’t have a blind person on my team, I’m an idiot. And I said, that’s what I want you to walk away with because of the skills you look for in an employee. I’m like, oh, my gosh, my blind sons have those. They have been practicing them their whole lives. Like you are kind of ridiculous if you — you don’t have the most effective team if you don’t have — a person succeeding without sight can elevate your team to a place where you can’t even imagine. So that’s the one aspect that we’re working on because that whole bias has to change.
But here is what I am laser focused on right now because of all of the — you know, I found out that the — of the 30% of the Blind Community that are employed, here comes math Kristin again, hang in there. The 30% that are employed, 90% know Braille; 90%. But get this, only 10% of blind children are being taught Braille. What in the holy hell.
>> Yeah, you know, and this is something I think you’ll appreciate. I went to St. John’s University for my Master’s Degrees in education. And one of the things I was blessed to have benefited from was a collection of professors who drilled into my brain, you teach to the ability. You don’t bend the ability to your teaching style.
>> So in essence — and again, Kirk Adams, when we had Kirk on the show, it was National Braille Day. And I actually learned how to read Braille when I could see.
>> A Professor, Dr. Goldblatt, Jippy Goldblatt, would always catch me reading it with my eyes. And she said, Albert, you are never going to learn Braille if you read it with your eyes. I’m like — she allowed me to call her by her name — Jippy, I am never going to be blind so what does it matter? Boom boom boom. But we are raising functionally literate children because teachers don’t have and schools don’t have any awareness about Braille. And one of the things I have always wanted to do and maybe we can do this together because I think you can agree that unless we see children from the Disability Community in mainstream classrooms, in general ed classrooms, we’re not going to have a contingent of citizens who expect to see those same people in their workforce.
>> So one of the things I learned early on about Braille was that it was a tool of war. It was created during the Napoleonic period. It was a 12 dot system. And Louis Braille turned it into a 6 dot system because his son poked out his eye with an awl. And it’s how Louis took — I don’t know if his father’s name was Louis, too. He might have been a Jr. I forget. But how Braille took the same tools he used as a woodworker and had his son use them to learn how to write.
And I keep wanting to create pen pals all over the world who learn how to write Braille because I keep thinking of “A Christmas Story” with that decoder ring and Ovaltine. And I think that would be a great way to do that. And then again one of the things at My Blind Spot we focus on tremendously is even though we work to create accessible, usable, functional, digital environments, we never get off our soapbox about talking about employment.
And the numbers get skewed because, you know, the way they figure out the data, again, mathematicians, they only consider people to be unemployed if they are actively looking for work. And people like Michael and Mitchell, who have lost their way, who may have lost hope and there’s a lot of people out there unfortunately who have lost hope about looking for a job, aren’t considered unemployed. And no consideration is taken to investigate why job applications and websites and portals don’t support assisted devices that allow Michael and Mitchell or even myself to look for a job.
>> So it’s really kind of ass backwards if you ask me. And I do agree with you. When we take a look at Corporate America, we want problem solvers. We want people who are disruptive. We want people who can think outside the box. Every day we wake up, that’s what we do. We are problem solving. John leaves a pair of shoes in the middle of the house. I’m like, oh, I can’t really step on those. I have to figure out a way to move around them. Somebody moved a garbage pail. Or I need to get from Point A to Point B, you become very creative at problem solving.
>> Yeah, teamwork. I mean, the boys have been in their IEP meetings — they have been in those meetings since 2nd Grade.
>> Kristin, can you explain to me real quick, what’s an IEP?
>> Yeah, I’m sorry, it’s the Individualized Education Plan. Which is basically the legal document that every child that learns differently, has a disability and whatnot, the schools have to follow. It has all of their strengths, weaknesses, goals for learning. And how they — accommodations that need to be made in the classroom. And they had a role that grew every year.
And now, they learned in high school, you have — Mitchell tried to get me to get him out of a biology class because the teacher sucked. Well, guess what. You have to manage that person. Or someone — you know, the one teacher — it was another science teacher in middle school refused to get the stuff to Michael in Braille. And he rallied up sighted friends of his to start putting pressure on. You have to figure things out.
That’s what our teams do, like you said, in Corporate America. These teams are working together, managing people that are annoying. People that are going to push the system. People that will be overachievers, whatever. You have to manage all of those people. My guys have been doing that for years.
>> The problem, as I’ve come to appreciate it, tends to be rooted in two emotions. Fear and guilt. Fear that we might catch it. Fear that we would never be able to deal with it. And then guilt over the fact that we could not protect our loved one from acquiring it or being born with it. And somehow when they are home, Michael and Mitchell are just Michael and Mitchell. They are not the blind kids. They are not the blind brothers. And the minute we walk out our homes, we get this Post-It snapped on our head. And oh, you’re disabled — and they use the word disabled, which is another whole bone of contention for me. You can’t join us.
And I don’t understand how 1 in 4 of us have a person living in our homes or we are one degree of separation from having a disability, why social circumstances and systems ostracize people like that. I grew up with cousins, friends, neighbors, who all had one type of disability or another. Some more extreme. But we never excluded them.
>> Right. This is another big piece of what I’m doing right now. This is what I started saying a little while ago that I do this with a full-on big heart and hug. These folks and holding their hands. But really I believe that a lot of these issues are beginning with the parents in the home.
And I know that they do everything out of love, as I did. But as you’re saying, you know, Michael and Mitchell walking out into the world and they are slapped with the Post-It note on them that they have a disability. The only way that they have managed to work around that and work through it and change perceptions and get to soar to the hopes and dreams that they’ve had for themselves is because it’s been instilled in them that that’s not an option. It’s not an option to accept that label. Right? But they are — we can give our kids all of the literacy and go through the K to 12 system and get into college and all of that. But if they don’t have instilled in them this, I’m not accepting your label on me and I’m still going to go after my dreams, we’re still going to have all of these issues. And yes, there’s a lot of spokes to the wheel where we have to address. But where I’m laser focused right now is on these moms and dads. And you nailed it right on the head. I actually wrote it down. Fear and guilt. And it’s paralyzing them.
>> There’s so much to unpack from everything you said. I was getting chills the entire time. I don’t know where to start first. Do I go with the fear and guilt? Or talk about my dad kicking my butt?
I remember when I first lost my eyesight. I spoke about this in the TEDTalk that John and I did. John was — basically produced my TEDTalk and I’m really proud of it.
>> Tell your story.
>> It’s funny. If it wasn’t my life, I would be like, that’s great, I want to hear more about this story. But it’s me. And I’m like, ugh, who wants to talk about me? But my dad, when I first found out I was going to be blind — first off, I knew in — I had this weird spiritual/morphine-induced haze. Morphine. Nice drug.
>> And I knew I was going to be blind when I woke up. However, I was under the impression it was going to be for a period of time. I’m not sure what that period was. I got a sense it was going to happen quicker than it has. And I was — I met with the doctor. And she basically said, okay, I’ll tell your doctor what’s going on. I’m like, aren’t you a doctor? You just flashed lights in my eyes. Yes. Why can’t you tell me? I have to talk to your doctor. I said, let’s connect the dots. I am paying your bill. I am your patient. What’s the diagnosis? 90% chance you’ll never see again. Okay. Fine.
I processed that. I went into a bit of — I was still in the hospital at the time. I had went down to 120 pounds. Went from 20/20 vision to no vision whatsoever. Almost died. Had last rights read coming from the priest out of the hospital room that day. And this is how terrible it was that I got this upset with a woman I don’t know. I had been able to hold down food for the first time in days. I had just emaciated to nothing. I looked like a victim from Auschwitz. Instead of getting that chicken caesar salad, which hospital food, do I really need to tell you how excited I was about that? How probably misguided that was. I got a peanut and jelly sandwich. I freaked out just as my dad walked in. I was cussing up a storm. He threw everybody out of the room and said, I don’t know who you think you are right now.
But we prayed. And my parents are not religious people. They are not spiritual people. They are just people.
And my father said — then we prayed. And I could have been Deaf and blind. Deaf and blind and paralyzed. I could have been just a warm body with a heartbeat.
And he reminded me in short, it sucks to be you right now. But I didn’t raise a quitter. So clench your pillow, break a glass. But no one is coming into this room until you get your head out of your ass.
And that’s really all it took. And for years, Jonathan and I have known each other for almost 11 years now. And I can remember sitting around the family table at his mom’s house. And they would like, you’re not that blind. You can see what you’re doing. You know, and like Mitchell and Michael, we present in a certain way that confuses the hell out of people. I was out front of my house one year ago making flowers boxes. I had gone to Home Depot. Had them cut all the pieces. And sat there with my power drill putting them together. My neighbors think I fake my blindness.
>> But it’s good parenting. It does start at home. And as educators, we all know that. That the concept of inclusion. The concept of social etiquette. The concept of appreciating your fellow man starts at home.
>> And you’ve given your children, all of your children, unequivocally a good foundation to build on.
So now all that being said, boys are out and about. I assume Michael is in college or finishing up college?
>> Oh, he’s in college. I was at his campus last weekend. He celebrated his 21st birthday. I’m going to give you some more numbers.
>> 49 is not 21, people.
>> It took me — 49 takes 7 days to recover from being up half the night, 21 goes right back out after brunch.
>> Oh, I’m with him. You know, I tell you, I’ve been taking vitamins to keep up with all the things we’ve been doing likely.
So Michael is in college. Mitchell is still in high school?
>> Yeah, deciding on colleges right now. He’s gotten accepted to so many places and he’s impressed himself. So we have to make some decisions soon.
>> I’m assuming, if you’re like most mothers, and you’re not, but you definitely are, what are you doing with your umbilical cord now that the boys don’t need it that much?
>> Well, there’s a question I’ve never been asked in the hundreds of interviews I’ve given.
>> I always tell my mother her umbilical cord stretches from Florida to Long Island. I’m like, you’re crazy. What are you doing? Are you okay?
You have accomplished quite a lot for your two children. And I think there’s things — I know that there are things that you have been doing and that you are doing to continue that work. Because you realized — and I think — I’m sorry, there’s just so much about you that I identify with. That there’s a calling here. You know, you don’t have time to be pitying yourself or pitying your circumstances.
You realize that there are bigger fish to fry. And what are you making this week?
>> Well, here is the thing, you know, I don’t even have time — I refuse to take the time to even pat myself or my kids on the back. Because I’m looking at the world, especially our country, and I keep saying to myself, who am I to sit on all that I know and not fix the stuff that’s going on? And not make the impact?
My life’s purpose was not to raise two blind children to succeed. My life’s purpose was to take everything that I was taught for the past 21 years and make a massive impact. Which is why I can run on four and a half hours sleep every night. Because it’s exciting work. I do have days where I’m frustrated.
So one of the big things back in 2019 — we’re coming up on the two year anniversary of the book “Thriving Blind” being published. And all I wanted to do was share the people I had met like Kirk and Tom Wlodkowski at Comcast and 13 others, Eric Weihenmayer wrote the foreword for it. He’s been a very good friend to our family. I wanted to share with people who I had met and what they had taught me so that more people would come onto this journey of blindness with hope. With tools. And with everything that I was not given when I was told my son was blind.
>> And you know, a book can only go so far.
So now it’s turned into I’m working on getting it into — there’s a couple of facets — all of the college programs where the teachers of the visually impaired are being trained. Because can you imagine that they came out, they graduate, I want them to know “Thriving Blind.” I want them to know me. I want them to know all of the stories in that book. Because I want them to get that diploma and go out into the world and sit in those IEPs — IEP meetings and, say no, no, no. A goal like he will find his cubby 70% of the time is unacceptable. If we’re not having him find it 100% of the time, we’ve got to change the teaching. So I need them at every IEP table to be changing all of that.
>> But the same folks sitting at that IEP table are the parents that need to come to it with the exact same extraordinary expectations. So I’m working with a couple of different groups. I just connected with FamilyConnect, it is now over at APH, to build an Advisory Board there. And empower way more parents on a much larger scale.
>> Do you mind explaining to me what APH is? I’m not sure what that is.
>> Yeah, APH is — what does that stand for? The American Printing House.
>> That’s what I thought. Okay. So the American Printing House for the Blind.
>> Yeah, that’s the big hub where the school districts, educators, parents go to find the different tools. They have Quota Funds, which is how the schools purchase the Braillers and all of that kind of stuff.
Can I get your opinion on this? We have developed the Thriving Blind Academy now. People have mixed feelings about this that it is a very nominal fee paid membership to have access to mentors, tools, everything I know. Right?
And there are people that say, why would you have those poor parents of blind kids —
>> Blah blah blah.
>> — pay anything, right?
>> No, I’m all with you. Pro bono is a no-no. You get what you pay for. If it’s free, you don’t have investment, you don’t have ownership, you don’t have value in the message.
>> And if it’s nominal then it becomes — and part of the membership I’m sure is sharing your stories and sharing your successes so we can cut to the chase for other people. One of the things you’ve said before that I own wholeheartedly is the concept of teamwork.
You know, growing up we always said, there’s no I in team. Duh, there’s an E and an A. But at My Blind Spot we believe that Team stands for Together Everyone Achieves More.
>> And your sons, being part of their curriculum development and their career goals, academic career goals, allows them ownership in the direction it goes. And it gives teachers and administrators insight into the capacities and capabilities of our youth.
One of the things I really appreciate about what you said is the thriving versus surviving. It’s one thing to just survive. It’s another thing to limit peoples’ abilities to survive and take the tools before them. And thrive. And live fulfilling lives.
And that is something I think that parents of people with disabilities or people with disabilities tend not to believe is possible. And if it is possible, our society sometimes throws a damp rag on that.
And like you, I happen to be a big fan of Ralph Waldo Emerson and there’s this whole poem he wrote about success. And the basic culmination — I don’t know, that hits me so much. The culmination is I try to live this to the best of my ability every day. I want to leave the world a little better than I found it. Whether it’s through the smile of a child or a garden. I just don’t want to leave a bad taste in peoples’ mouths. Everybody out there, be quiet because I know I do that all the time.
And that’s one of the things I’ve come to really in the short few weeks that I’ve known you, I think that’s the differentiator. Amongst people who want to do good by others. And people who are actually changing and impacting the human condition.
So thank you.
>> Well, right back at ya. You know, I love hanging out with — who was it Jim Rohn who said, you’re the average of the five people you spend the most time with. And I learned in my divorce journey, you know, we tend to — we’re very well known in my community, as you can imagine. I mean, who has two blind kids? And I did a ton of work here.
And I’ve been coaching kids and soccer teams my whole existence. And my family — I was raised in, you give to your community before you ever need anything from them.
I’ve just been raised in servant leadership. So we’re very, very well known here.
But then I really started trimming back on who I spend time with. I have tons of friends we go out and have a good time. But who I really align my values with to keep me moving on the path that I know I was destined for.
I know we mentioned God and prayer a couple of times. But I also came upon — I don’t know if you know Hal Elrod and “The Miracle Morning.” But that saved my life and sanity when this whole nightmare began four years ago.
And ever since then, I’ve been my morning with mantras and affirmations and prayer and different things. And one of the things I started saying 18 months ago when I was in yet another cyclone of craziness was, make me into who I need to be to handle what you have for me. I say it every day all day long. And when things are coming and doors are closing and I’m wondering and I just keep saying, make me into who I need to be handle what you have for me.
I know it’s a big charge. I mean, I’m looking at over the next two years. My goal is to have 1,000 parents in my Thriving Blind Academy to make the beginning of the impact that we need to change things.
It’s a big goal. But it’s so necessary that I am laser focused on it. And when we can get those 1,000 people to understand how their simple change in perception will change the trajectory of this community and then they reach out and get 1,000 people and 1,000 people. You know, those are the big-scale things that need to happen. And I see it. I see the possibility. And the finish line.
And it’s getting there. Because honestly, to watch my sons go through running circles around people, having baseball championships where they were MVPs and not the token blind kid on the team but actually giving all kinds of talent to teams and the stuff that they have done. And then somebody says, oh, you are the top sound engineer in your age bracket. But that cane scares me so we’re going to pass on hiring you.
>> My sense is, and my firm belief in why we are so segregated and disenfranchised has everything to do with legal departments and HR departments not looking past the antiquated misperceptions about ability.
>> They look to make sure — the lawyer looks so they don’t get sued and they save money to fund any potential litigations as opposed to redirecting their resources to underwrite the ability as opposed to empower the disability. They will give money to all of these organizations that really are geared at making the lives of the downtrodden and the people who aren’t going to work more comfortable. As opposed to investing in their resources and their technologies to make their environments more inclusive so we can move away from being taxing dependents on public programs and being independent taxpayers.
It’s an economic win-win for everybody. Mentally I feel better, I’m making money. The opportunity to grow in my careers with upward mobility is critically important. And that’s not available to us today.
And if we just got off the public assistance programs, you know, the Social Security system, which is hopping along on hospice, would rebound back a little bit. Because we would have new people who were earning an income paying into the system.
>> Exactly; exactly. And that’s how we need to start presenting — this is — it’s so interesting how, you know, math Kristin has come back into the light here after all of these years. Because those are the kinds of messages with those kinds of numbers that this world needs to understand. And they hear things more when you talk in numbers.
Just like that whole only 10% of blind people are learning Braille. It’s like honestly, I have to go to the educators. But I have not — and you guys will appreciate this now.
I have not crafted a message that is other than, screw you, look what you’re doing to these kids.
>> Oh, no. You know —
>> Bully Kristin keeps showing up to send that message and I’ve got to tweak it just a tiny bit.
>> No but again, first of all, I love you. Kirk can tell you and I’m sure John — anybody who knows me can tell you, I come in like an angry elf. And you have such a message but you’re always so angry. No I’m not angry. I’m from New York. We all talk with directness and a no-bullshit attitude.
And I am sorry, I do admit to being angry because my predecessors my forefathers and foremothers in this community missed the boat on a few things. And yet they have made significant advancements at the same time. We were just talking about that with Kirk and John.
I just don’t know that 21 years being a mom is going to give you any insights on how things have changed academically. Because it sounds like it’s still the same as it was for Kirk when he was going to school.
Poor access to printed materials in Braille. All these things. It’s just unbecoming of our educational system.
>> It’s obscene is what it is. It’s absolutely obscene.
>> When you get angry about it, people go, oh, he’s just an angry blind person. He’s not happy with himself. No. I’m just angry that you feel it’s not important for me — I mean, I’ve had people at the church — I used to sing in the church choir here. I remember we were doing a presentation where I had to go up on to the altar and everybody was right in front of me and they start whispering as if I was Deaf, too.
How are we going to get Albert up on the altar? They are going back, well, maybe one of us could help.
Well, maybe, just maybe you could let his damn dog do his job. And they are like, what? And I’m like, I’m right here, people. I know how to walk up a flight of stairs.
So it’s just that low expectation that gets imposed on us. Again, going back to the fear and guilt. And I’ll give you something else to chew on.
I don’t understand why blindness gets such a bad rap. When we grow up, we probably have said at least once or twice in our lives — I know I’ve said it to my dad, I can do it with my eyes closed. That’s how well I know my lessons, Dad. All right, cool.
Or we try to remember and we close our eyes — and I’m doing it right now. How stupid is that. We close our eyes to try to distract our sight from anything that blocks our memory about — Carissa. That’s her name, Clarice. And then we want to believe in a higher power. Whether it’s God, whether it’s Satan, whether it’s the universe or Mother Nature, we have to believe that exists with blind faith. We can’t touch it or feel it.
And we want to find that person to spend the rest of our lives with. We have to have blind trust in that person. We have to know they have our back. And then when the proverbial shit hits the fan, we go to court. What is Lady Justice wearing? If you say a black Chanel number, I’m going to smack you. She’s wearing a blindfold.
Seeing is not believing.
>> Justice is blind.
>> Justice is blind. Believing is seeing.
>> You know, we can’t see the truth because it skews the rest of our senses. And it goes back to our primal sense of who we were as primates. We have stopped using our eyes for anything other than the cursory threat of the dangers or the thrills that are out there. Because we have become more dependent on that one sense that tricks us into believing something. Versus the touch and the sensation, the spirituality, our heart, our minds, our soul.
I have really never seen more clearly in my entire life. The only thing I don’t have is the luxury of seeing the faces of the people I love today. And that kind of hurts.
>> Yeah. That’s — my Michael will say the same thing. He’s always telling me sighted people are so distracted. Too bad they can’t focus like him and he doesn’t even say it with a smart assness. He’s just right.
>> It’s matter of fact.
>> It’s matter of fact.
>> Get out of my head. You’re repeating my words. But yes.
And the funny thing, as we talk about being the parent of a student with a learning challenge, for lack of a better term, Jonathan grew up the same way, John has dyslexia. And his mom stepped up and helped him digest information. And he’s ridiculous — he’s a ravenous consumer of unfortunately digitized communication. I can’t get the phone out of his hand ever.
>> But —
>> Yeah. Today that’s the best you can get. It’s instantaneous information. And it’s free.
>> It’s free.
>> So we have this book that you’ve written called “Thriving Blind”.
>> “Thriving Blind: Stories of Real People Succeeding Without Sight.”
>> We’ve got to write a book together. That’s something we should do together. No, it would be great because I keep thinking I want to do it one of two ways. Tell about my journey from blindness to now. And then I want to do, like you said, little vignettes, little chapters on the silly shit and the emotional stuff that I went through and all of the things that are like, well, that’s kind of funny and that’s kind of moving.
But now we came to know each other from an introduction through a mutual colleague of ours, Ron Brooks based in Arizona.
>> Yeah, it was Arizona because every morning I’m in an accountability group with him and he reminds me as I’m shovelling snow that it’s 82 degrees and sunny.
>> That bastard. I mean, really, I don’t like these people who live in these warm areas. But then come to me in the summer when you’re 95 degrees and you’re dripping sweat and can’t go out of your house.
>> Well, they all tell me, Kristin, I don’t have to shovel heat. I’m like, you know what? I think I have to mute you on my Zoom.
>> Again, I was talking before about what you’re doing with all of this knowledge and expertise that you’ve manifested to help promote your children’s lives and inclusion and all things possible. Tell us a little bit about these groups you’ve started that I’ve been invited to participate in. And give us some background on some of those things.
>> Yeah, so back in the fall of 2020, the infamous, dun dun dun, pandemic year, when everything was shut down, I saw it as an opportunity to finally find all of those parents that I wanted to reach. Because at the beginning of 2020 I had my dream keynote speech at the Texas School for the Blind and Visually Impaired’s annual convention, which they had been the ones I turned to for so many years when I started this journey. I did the keynote. Then there’s the standing ovation. And I’m standing there for about five seconds. I was so proud. And then I looked around and I thought, I have the wrong audience. There’s are the people who all get it.
>> Yeah, you’re preaching to the choir.
>> Yeah, where are the parents that don’t get it? So fast forward to everything being shut down. People now understand how to run Zoom, sort of.
>> And I decide to have an online summit where somehow 27 of the most fun, diverse, extraordinary people succeeding without sight were jumping in. I couldn’t even keep up with having all of them in one day to do this summit for parents. We did it over three days. Had 17 countries attend. It was absolutely extraordinary.
And out of that, that’s actually where Thriving Blind Academy membership was born. Is I didn’t want just one day of inspiration every year. They need the tools daily. Right?
So as I’m starting to look at that, I watched. And during the three-day event, people were excited over hearing some of the messages. And we had wonderful speakers.
>> That’s one thing that I think is missing in our community. We don’t have a sense of which tools — like a Consumer Report. The best tools out there for people who want to thrive as blind people. And I’m also wanting to consider a Thriving Blind Academy for people who are adults who transition into the community and don’t know what to do with life after that.
There are so many facets to joining —
>> That’s it. You’re right, because they need that, too.
>> Yeah, I mean, Mitch and Michael both have seniority. Well, yeah, they do, 15 years blind. They have seniority over me as far as a knowledge about being blind. And I think that today there are these Millennials, there’s this youth that do not accept anything short of complete inclusion, total diversity, acceptance of people, regardless of race, gender, orientation, faith and ability, all of that.
And then we have people like me who are aging into the community.
>> You know, you Baby Boomers are aging into this at an alarming rate. And we have an interesting storm that is perfecting itself in a manner where the concept of authentic inclusion is something we are living with or striving to live with in our society. At the same time that the older members of our society are aging into a community where they are going to be ostracized and marginalized. And Baby Boomers have amassed the largest amount of wealth in human history. And I don’t think they are going to take being a member of the Disability Community lying down, so to speak.
>> They are going to want to live life to the fullest and thrive.
>> You’re right. That’s a focus that we have to address. Because a lot of that community, they are now flooding into the addiction community.
>> Oh, yeah.
>> Because they can’t handle it. And the mental health. And all of those things that we need to prevent. But yeah, it’s absolutely a focus that we need to add onto this. As I say, it’s like the wheel with the spokes to make the greatest impact.
>> Yes. And I agree. John and I always talk about staying in our lane. We talk about the concept of together everyone achieves more. And if we come together with like-minded individuals and we all look at our axle and the spokes of that wheel being our independent strengths and our expertise and joining together to strengthen an infrastructure that’s already in place but splintered, then we create this Henry Ford manufacturing line of great ideas that don’t see the light of day because I don’t have the network. I don’t have the resource.
>> And we can pool together. Because many shoulders make light work.
>> It sounds like the starting point of something you have already alluded to, this group that I asked you to be a part of that you so kindly came in. I still can’t believe the folks that came in to give me their brain cells and expertise. And I’m thinking, how does my life unfold this way? But it’s because —
>> You make yourself available for that.
>> And I’m really excited to be a part of the Assistive Tech Tank. Say that three times fast, everybody. And looking forward to doing more things together as we strategize and theorize about next steps and possibilities. But what’s next on the horizon for you? What is happening? What will we expect from you? What’s the future look like? What thoughts do you have to leave us with?
>> I tell you what, I always say to people, grab some coffee, when you ask a question like that. Because you really got to have some caffeine to hear all of the things I have going on.
But here is the thing, I’ve got — the Assistive Tech Tank is just going to be a game changer for the Assistive Technology and Disability Community to really accelerate and highlight the innovation that’s possible when you remove some barriers, right? And I’m working on a short film with some folks to change perceptions in the HR side of things and Thriving Blind Academy is laser focused right now on educating, equipping and corralling the parents to make a huge impact.
And with those three huge missions I am so confident that the world is ready to take these things and run with them. Because there was this thing that happened over the summer where my eyes were literally wide open to the fact that everybody is complaining about the Millennials. But I’ll tell you what, the Millennials were raised in inclusion. They are the first group that really, you know, had every ability, disability, whatever, in their classrooms and got to see and experience how you can remove barriers with tools and access.
>> I agree.
>> Over the summer, my Mitchell is in the AP classes. And CollegeBoard had denied all of the kids who use Braille — and there’s a lot of them in the AP classes.
>> They denied the use of Braille for the — everyone had to take the AP exams at home because everything was shut down. We did with one of Mitchell’s good friends, we had her — she was the one that was the first one that was like, she called me, Kristin, what are we going to do about this? They are denying us Braille. I said, have your mom turn on her cell phone camera and I want you to get your BrailleNote, the electronic Brailler, and read a 30-second 1-minute statement about what is happening and what you’re being denied and how you feel about that.
It’s 90 seconds long. We put it on Twitter. And all she said basically was, we deserve the AP exam in the format that we learn best, Braille.
>> That’s the law.
>> Yes. It was in everybody’s IEP, all of that. And I said, don’t go into all the details. Just say it’s by law, we have Braille. Blah blah blah. And she’s reading Braille. 90 seconds long.
The video went to over 1 million people reacting to this video. It went berserk. Shared everyone. People commenting. Getting in touch with us. Got all kinds of attorneys involved. And CollegeBoard had to — they fought it and fought it and fought it and the video kept growing and people were outraged and it wasn’t the Blind Community. It was the general community that was outraged for these kids. And CollegeBoard had to reverse and accepted the hard copy Braille to peoples’ houses and have them take the test.
When I watched that happen, and I also watched — you know, I think it was two years ago Stevie Wonder is on stage at the Grammys and has the winner in the envelope and it’s in Braille and he said to everybody, ha-ha-ha, I can see it and you can’t. And it goes viral. Not because it was Stevie Wonder being funny. It was because like, oh, Braille, the tool Braille. You know what I mean?
And we were also involved in when Comcast did the talking guide. That finally on cable my boys can access the TV guide and see what — it talks to them and what the channels are and everything.
>> Oh, my God.
>> They did a video about it, right?
>> They called me two months later and said it hit 1.4 million views. It had nothing to do with the Smedley name on it. It was that people were so excited about one product being inclusive to everybody.
>> That is fantastic. I mean, noticing the progression and the inclusion and the acceptance of diversity is what’s going to make us globally ready to be disability inclusive and disability friendly.
>> Yeah, I’m just not going to wait the 15 years for these kids to be in the positions that they can hire. It’s got to be the people who are hiring now have to understand and get out of the way.
>> That’s so well said.
So tell people where we could find you and how to connect with you in the event we have parents listening who need to be part of the Thriving Blind Academy.
>> Yeah, so the easiest way is KristinSmedley.com. I’m Kristin with two I’s. I’m an i‑n. I also bought Kristin with an e‑n because everybody spells it wrong. But KristinSmedley.com is the hub of everything. It is going through a whole construction phase. So if you don’t get it, send an email to email@example.com. I’m all over social media because I think it’s important to put the message out on every channel. Even though my daughter is not happy that I’m on Instagram and her friends like my posts.
>> Oh, my God. Just don’t start doing TikTok videos where you’re dancing.
>> I did that with my dogs.
>> My daughter was never so happy that my phone was so full I had to get rid of the TikTok app. She was like, oh, thank you, God.
>> I’m not good at keeping up with downloading stuff. But I am on — and we do have a very big and Thriving Blind Community on Facebook so look that up. You can jump on there. I share the stories of my boys. The technology stuff. I’m involved with pretty much everything that we do here. And I look forward to folks getting involved. And if you want to jump right into Thriving Blind Academy, you can go to thriving blind.com and it will take you right in and see how to become a member.
>> And where can we get your book?
>> On Amazon. It was a No. 2 best seller and No. 1 new release. Amazon. Just look up “Thriving Blind.” You can get it there.
>> Cool. Thank you for your time, Kristin. It was a great experience talking to you.
>> No, it was really great.
>> Oh, thanks, I had a great time.
>> Anything that we could do together, anything we can support you through at My Blind Spot, you had us at hello.
>> I appreciate the work you guys do and all of the friendship that’s involved here. Thank you so much.
>> Kristin Smedley does totally embrace behind every strong man is a good woman — usually my mom — pushing us and driving us to greatness. These boys have done fantastic things. And they gave her the inspiration. And the drive to do even greater things. So the boys were the impetus for all the things that Kristin has done and I urge you all to take time to go to her Facebook page and her website and read her book. John, what was the name of the book again, “Thriving Blind”?
>> “Thriving Blind: Stories of Real People Succeeding Without Sight.”
>> Talk about a book with vision beyond sight. And coming up next I’m really excited to have our next guest, Mike Paciello — it depends how — my JAWS program likes to destroy his name. A driving force in the inclusion disability digital equity arena. And you’re going to hear about a new project he’s got coming down the pike.
>> And that’s about it for today.
>> Again, to find us, go to Apple, Spotify, or MyBlindSpot.org. And listen to AccessAbility Works podcast.
>> A podcast about the possibilities of accessibility for people with disabilities. I’m John Hermus.
>> And I’m Albert Rizzi.
>> Thanks for listening.
>> But — that is background noise. We want to bring you into our moment. That is somebody bringing in their garbage pail. Can you hear the sounds of the wheels against the pavement?
>> I can. That’s not about her children.
>> No. 3, 2, 1. Yeah, she — her two children, the two boys, the older boys — I hate you.
>> He had to go back for the second can.
>> I know. We have to put a sign up for the street to say, we’re recording here, people.
>> It’s the red light.
>> Red light district. Red light, green light. One, two, no garbage pails.
>> Okay. Go ahead.
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