Nicole :
All I wanted all of the time was to look, feel, be "normal". And I wasn't surrounded by anybody who had the education or the resources to really plug me into the understanding that you know what my life was always going to look and feel and be different. And since it was always going to look and feel and be different, let's talk about what those realities are and give you a menu of ways to deal with those situations when you're encountering them.
Erik :
It's easy to talk about the successes, but what doesn't get talked about enough is the struggle. My name is Erik Weihenmayer. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon and I happened to be blind. It's been a struggle to live what I call a no barriers life, to define it, to push the parameters of what it means. And part of the equation is diving into the learning process and trying to illuminate the universal elements that exist along the way and not unexplored terrain between those dark places we find ourselves in the summit exists a map. That map, that way forward is what we call no barriers.
Tom :
Nicole Kelly's stepped into the role of a public figure in 2013 when she won the title of Miss Iowa, making her one of very few to compete at Miss America with a physical disability. She is the co-creator and cohost of the podcast, Disarming Disability, which aims to break down stigmas and prejudices. Nicole also speaks at schools, universities, and corporations across the country about disability, equity and inclusion.
Erik :
Everyone. Welcome to the No Barriers Podcast. Nicole, thank you so much for joining us. This is really exciting to have you on. My co-host today is Tom Lillig. Who's the president of the No Barriers board. So he's been instrumental in all the progress we've made as a movement. So great to talk to you.
Nicole :
Thank you so much for allowing me to join you from my CoApt headquarters. That's my workplace. And we just were joking about how this actually is almost as cool as [inaudible 00:02:36] Industries headquarters. So I think it's important for everyone to know that right off the bat.
Erik :
So cool. I wish I could be there. CoApt [inaudible 00:02:45] headquarters.
Nicole :
That's right.
Erik :
I just want to kick in with one question here. And that is, I was really fascinated with your story growing up in Iowa, this tiny little town, you're born without a hand, your arm amputee or hand amputee, and you use this word ableism, which I had never heard before. Explain what ableism is and how it applied to your childhood.
Nicole :
Yeah, absolutely. Really. It's the idea that disability is less than, or not good enough or disability is something that needs to be fixed.
Erik :
But it can be guise as a compliment, right? Like a stroke to your ego. When you were growing up, people were like, you're not disabled. You're just perfectly normal. Right. So you're like, "Yeah, exactly. I'm an exception. I'm special." Right. And so that's why it seems so tricky because I think I grew up like that. My parents forced me to go to blind camp and I was like, "I'm not going to meet a bunch of blind dorks." And I got forced into it and I was like, wow, these kids are kind of cool. And I'm learning technologies. And I'm learning that these differences can be positive and full of power.
Nicole :
Yes, exactly what you just said. It's really, really confusing to grow up. Disability is a different culture than other marginalized communities, right? Because other marginalized communities kind of have access to each other to grow in pride with each other. And disability oftentimes we're being raised by parents who are able bodied. And so they don't understand what the right messaging is. Of course, they're always trying to do their best. They're not ever trying to hurt us or give us that or incorrect messaging, but it's incredibly confusing to be a child who is growing up and constantly being told how special you are, because you are able to do a simple task. The world is constantly telling you that. And that's a really confusing message. And it's a really confusing message to be told, I don't see you as disabled. You're not disabled because then what that messaging is to me as a person growing up is that that disability identity is something that's really bad or wrong. And something that I shouldn't want to be associated with.
Erik :
I think gets buried. Right.
Nicole :
Yes, totally.
Erik :
So you spent your childhood trying to fit in, try to be normal like doing sports and struggling through all that stuff and trying to look like everyone else. Right.
Nicole :
Exactly. All I wanted all of the time was to look, feel, be "normal." I didn't want to talk about the fact that I had a difference. I wanted to pretend like I was the same and I wasn't surrounded by anybody who had the education or the resources to really plug me into the understanding that you know what, my life was always going to look and feel and be different. And since it was always going to look and feel and be different, let's talk about what those realities are and give you a menu of ways to deal with those situations when you're encountering them. Mostly when I look back at growing up, that's what I wish I had. A person who could just be like, this is the reality. You're going to have people who tell you all the time. Well, you don't look disabled to me. Well then how do I respond to that? What does that even mean? And I wish I would've had that person growing up to help me understand and navigate those situations.
Tom :
That's so interesting because you're already thinking forward about how you could sort of help others in that situation, what you would have wanted as a child. And I know that that's a big part of your mission, but going back to that time period, was there one particular moment or was it a series of moments that sort of led you to this awakening that it would have helped had I had someone to best prepare me for this? I know that in 2013 you won Miss Iowa and then 2014 you competed for Miss America. So I'm guessing that it might've happened sometime around that stage competition. Is that right?
Nicole :
Yeah. You are honing in on what I often refer to as my inciting incident. I had won the title of Miss Iowa understanding and realizing that a huge piece of what I would be talking about would be the fact that I had a difference. However, what my messaging was going into miss America was I'm no different than these other girls. I'm no different. My life looks exactly the same. People don't treat me any differently. I'm no different. Just let me compete beside them. However, when I won the title of Miss Iowa, I became quite literally world news, not just national news, I became world news and every single headline use the word disabled or disability to describe who I was as a person.
Nicole :
And the way in which I was talked about was so only inspirational instead of the news reporters asking, "Well, why has it taken until the year 2013 for someone with a really visible disability to have access to the Miss America stage?" Instead they were making it as if it was, oh, so sweet and Oh, so wonderful that someone like me could actually do it. Right. And that was an incredibly hard reality that I had no choice but to face at that point. When the whole world is using a word to describe you, it's pretty hard to not have to look it in the face.
Erik :
So when people say things like, oh... Because I heard you say this on your blog, on your video blog like, Oh, good for you. Or isn't that cool? Isn't she an inspiration? It's sort of like, you don't know what to think about that exactly. Right. Almost makes you feel a little bit squirmy, uncomfortable, right?
Nicole :
It does. Yeah. I've learned now that I've done a lot of reading and connecting with other people in the community that way of kind of talking about somebody in the news media is actually called inspiration porn. And just by me saying that, you know exactly what I mean. Right.
Erik :
Right.
Nicole :
It really is a making the person. The story really isn't about a story at all. It's about making that person something that is purely inspirational so the rest of the world can feel really good about themselves reading that. So I can be the morning news that makes someone go, "Ah, isn't that sweet."
Erik :
Right. But it's on the surface. That's not deep. It's not like illuminating. There's no evolution to this to the depth of thought there, I guess, right?
Nicole :
Absolutely correct. And it's not actually talking about the issue, right. I would've much rather headlines been, why hasn't miss America been literally accessible to other people like Nicole Kelly until this year versus isn't it so inspiring that she's going to Miss America. So instead of really honing in on the institution and asking why barriers have existed, it focuses in on the person and tells them that they are inspirational. And again, that's such a confusing message to receive. I mean, I am proud for being one of the only a few really physically disabled people to compete at Miss America. I am really proud of that. But to be honest, it took me a really, really long time to grow into that pride because it took me understanding that the world really did treat me differently and that the way in which we interact with the world and interacts with us is different.
Nicole :
So now I can look back at that experience and really say, "Yeah, you know what? That was a barrier that I was breaking." "Yeah. I really was making a statement just by my pure physical being, being on that stage." But living through it was incredibly confusing and incredibly hard because all I wanted was to be like and be treated like every single other girl on that stage. And I was not. I was not treated like every single other girl on that stage.
Erik :
It's almost what I'm hearing and I've never really thought about it this and this way is that hearing you're special, you're inspirational, you're so amazing constantly. It could almost maybe stunt your growth a little bit as a human being.
Nicole :
What I think it does is instead of asking the outside world how to kind of fix things for us, I think it really just tells us I'm working extra hard and get extra accolades for it. Does that kind of make sense instead of turning outward and asking to tear those things down?
Erik :
Right.
Tom :
Well, I think also it's tied closely to what you said before, which is you really kind of shifted what you wanted your role to be from inspirational to informational. And I wonder if you might elaborate on that.
Erik :
Tom, good phrase there. Inspirational or informational. Did you just make that up?
Tom :
That's all Nicole. That is all Nicole.
Erik :
Oh, really. [crosstalk 00:12:10] That's a good one.
Nicole :
I love it. I mean, it's a joke, but not a joke that my favorite thing to do is soapbox. And I always tell people, I hope I'm doing it in a way that's actually accessible and loving. Because I feel like once I found this information, right, this information that talk to me about disability pride, and that taught me for the first time ever disability history. Nobody taught me the history of my people, right. Once I really leaned into that and really started understanding that, yes, my life is different and yes, people do treat me differently, but I can choose how to respond to that. And I can respond to that wearing this hat of education, where I can say you know what news media, that article you release is actually something we call inspiration [inaudible 00:13:03] and that's not the right way to report about this. Let's talk about it. Right. So kind of trying to turn the tables there.
Nicole :
And it was so hard for years, for years, I struggled to find the right books and the right mentors and the right information to make that Miss America experience makes sense. And once I finally found that information, I mean, it's like I found the end of the rainbow. Everybody needs to know why didn't anybody tell me this growing up. Now everybody needs to know this because my life would have been totally different had I known this information. So yeah, I think it's kind of that's the mentality I have is just like I found the end of the rainbow. I feel I have answers people are seeking and I want passionately to just like help people find that. And hopefully not soapbox too much.
Erik :
What is the words you like? I mean, I think it's funny when people say you're candy capable or I'm not blind, I'm a person of sightlessness or or I get this special ski pass and it says ability plus. I'm like, "Wait a second. I'm not disabled. I have extra abilities. See the plus right there." So it's just really funny how people try to use the right language.
Nicole :
Now that I have kind of really leaned into the disability community, that the word that I really love is disability. And that comes from the fact that people who have fought so hard for the rights that I now have, the people who worked so hard to get section 504 passed and who worked to get the ADA passed into law. Those people took on that identity and that word disability. And so really as almost like an honor to them and the work that they have done like that now is proudly the identity word that I like to claim. And I do that because of kind of reading that past history and understanding that was the word that they really took on with pride. Does that make sense?
Tom :
It does.
Erik :
Yeah, it's really fascinating because I think this could be applied to so many things because they're like, it's flattering and I've been in that situation too, where people are like, "Oh, you squeaked through the gauntlet. You're exceptional." But it's almost does a disservice to the disability community because you're thinking, oh, you're an exception to the rule rather than if we truly get to know people and understand what their strengths and abilities are then we'll lift all boats up
Nicole :
Hugely so. And if you are the exception to the rule, then what barriers are in place that haven't been torn down so the rest of the people who look like me have also jumped over that wall, right? It just means there's some ceiling that hasn't been broken, some barrier that needs to be punched in the face in order to take it down.
Tom :
Well, you came to the right podcast for that. [inaudible 00:16:12] after all.
Erik :
Who are you going to punch in the face Tom?
Tom :
I don't know. But this is getting me all juiced up. I want to punch down some barriers.
Nicole :
In a virtual world, who are you going to punch?
Tom :
Exactly. Right. Punch through those barriers.
Nicole :
That's right.
Tom :
When I think about your story, it sounds like you really sort of entered this... Sometimes we call it entering the storm. You entered this period after your Miss America pageant, where you did a lot of finding out information for yourself. You needed to equip yourself with some understanding about not just the word disability, but how you related to it. I was wondering, was there any person or persons, was there a rope team or a mentor or someone within your inner circle that you found that you really used as a guide or were you really just going in there and finding articles on your own, seeing how they related to you? I'm curious how you were able to kind of piece that all together in your own understanding.
Nicole :
Yeah. I had no idea where to start at the beginning at all. And in fact, my first choices kind of coming out of the gate would be to intentionally do something with a group that kind of proudly used the word disability in order to sneak myself into that space so I could observe and prove how very not disabled I was. I now live here in Chicago. Once I found myself here, I connected actually into an organization called Access Living. And this was while I was going back to graduate school. So I had the perfect cover story of I'm a student who needs to record things.
Nicole :
And by walking into their space with this cam quarter, as a journalism student, I got to meet these amazing disability advocates who really started to share with me pieces of history and books to read and things to do and places to go within the city. And really that for me, was my strong, strong jumping off point into understanding, oh no, disability rights are civil rights and there has been a huge movement. There's still a huge movement. Here are experiences I've had. And that organization was the true click for me.
Erik :
Right. And, and the fact that your disability is a source of strength and has this story, I don't know this power of storytelling and connection, and it could be celebrated instead of hidden, right?
Nicole :
Yeah, absolutely celebrated and not only celebrated, but now I could start to learn and understand experiences that I had had all the time. You know, I can't count the number of times that I'll have a person try to help me carry my groceries out of the grocery store. Well, I'd never really stopped to slow that down. What does that mean? What does that look like? How do I respond in that situation? And you know it's not really an insulting question, do you need help carrying your groceries? But also when you are asked every single time you go to the grocery store and nobody else around you is, right, that's sending a very specific message. So maybe that's a weird example to throw in there, but really starting to understand how to respond and also how to identify this pattern of the way that the world interacted with me.
Erik :
Right. And that led you to the more discoveries probably because now you're like, okay, well, if this is okay to be who I am, then let me start investigating some of the technologies and tools that might enhance my life and be open about these.
Nicole :
A million percent. The second that I realized, oh, my life looks differently than others, suddenly this world of adaptation and finding and using access tools was another world that completely opened up to me as well. Suddenly those tools weren't shameful anymore. Those tools were something that were there to actively help me in my life. And how cool was it that there were experts every day working on tools that would help me in my everyday life.
Tom :
So you brought up the word shame and shamefulness, and I'd love if you could just reflect on your own personal relationship with shame.
Nicole :
So shame when you are a person who has a difference that is very visible, is at least my experience with it was very deep rooted because it's never me that is the first thing that enters into a room. It is a 100% all of the time, my disability that enters first. That is what people see first. That is what people awkward really don't acknowledge first. And because I've grown up in that pattern of knowing people see it first, but then also won't address it upfront. That is a constant breeding of shame repeatedly over and over and over again, because hush hush, we can't talk about the fact that this girl has one hand. It's shameful to talk about the fact that this girl has one hand. And I would layer on top of that growing up again, this idea of using any kind of extra help or extra access device that was talked about in a way that almost was only weakness. And if you just try a little bit harder, you'll jump over those barriers that the world has placed for you.
Nicole :
Instead of saying, yeah, you know what? This access tool is something that was created in order for me to hop over that barrier that exists. It was really the opposite. The world was telling me, just try harder and you'll do it. And that's completely incorrect messaging. That's just so wrong. So it's so confusing to grow up repeatedly all of the time gathering these literal verbal cues, these nonverbal cues, these just the way that people talk to you and about you. It's really hard. And so you end up becoming this adult person who... I had never stared the reality of how the world treated me in the face because I didn't even know how to begin to do that. And so much of that was filled with shame. Because if I'm staring that in the face, does that mean, I'm saying that I can't do it, that I didn't try hard enough to do it to meet people at their level. So there's a lot of it there.
Erik :
I mean, look, this is so powerful. I remember when I was back at that blind camp, there was a young lady who, when she was home, she wasn't even allowed to use the word blind. She wasn't allowed to say I am blind because for her parents, that was such a defeat, that was such a giving in to this situation, right? And so you just live under this, you try to live under this illusion, right, that there's no differences. It's such a prison. It's such a catch 22.
Nicole :
Yes. Yes to everything you just said. And what a great example of ableism that you just shared. The parents saw blindness as so shameful that you can't even use the language or the words to even verbalize it. And I think that's the most empowering thing that I've gained is just the language to communicate my experience. Nobody had ever taught me the language to communicate that until this whole experience that we've been talking about today.
Erik :
All right. So Tom, you went esoteric. I want to go the opposite opposite of esoteric, Which was, I watched a ton of your videos or listened to them, I should say. And the most fascinating thing, maybe it's just me. because I'm weird. You and that guy you're interviewing in one of your videos, you guys started talking about finger buds. I was like, now that's got to be in the Guinness book of world record the first time two peoples talk about their finger buds. I just thought that was so cool. I don't know. Am I a weirdo?
Nicole :
No, you're not a weirdo. And this is another piece of like body and autonomy that in the amputee world. So in the amputee world, you can be what's called a congenital amputee. That means you were born that way. So that's what I am. I was from birth born with one hand, or you can be a traumatic amputee and that of course is somebody who then loses a limb. And those of us who are congenital amputees and who are born with one hand, for whatever reason, almost all of the time, we have our finger buds still as a part of our autonomy and still as a part of our body. So yeah, my parents actually chose to get my cutoff, which is like maybe weird and gross, but they would've never been usable. I could have never done anything with them. But yeah, if you encounter another congenital amputee, they just might still have their finger buds.
Erik :
I just wanted to say [inaudible 00:25:35] finger buds. I want to be pioneering to your videos.
Tom :
That's great. I think that we need to bring up finger buds more often. And Nicole, I think you've broken new ground. You're a pioneer in this podcast where I think for the first time ever, we're talking finger buds. So that's fantastic. But to keep going along the line that Eric started, one of the things that you're doing right now is you're talking to us from the headquarters of CoApt. So I thought maybe you could tell us a little bit about how this transformation, this journey has taken you almost full circle. We talked about shame of the adaptive elements, and now here you are right at the place that these things are created. So it wouldn't mind just tell us a little bit about how you've come full circle to this month.
Erik :
Yeah. You've been learning well back a few years ago, you were learning how to use a prosthetic hand. And there's a lot of technology around that. So that was like, I'm assuming the first time you had really begun to experiment with a prosthetic hand and what it might offer for you, right?
Nicole :
Yes and no. So yes. First of all, I'm coming to you from my work co-opt headquarters. So as you're hearing the shuffling about, and the doors opening and closing and whatnot, it's because I'm in a living, breathing workspace with you all today. So yeah. What CoApt does that it's very most basic is it's the smart computer that goes inside modern day prosthetic arms, specifically prosthetic arms. And what this modern day computer does is it actually communicates between the end of your arm and the terminal devices. The terminal device is actually the bionic hand itself and tells the bionic hand at the end of the arm what your muscle movements want. So do I want to point, do I want to open my hand? Do I want to close my hand? What is it that I want to do? And it really allows you to intuitively manipulate this bionic hand and allows you to work and use your prosthetic. Right.
Erik :
We have this guy [inaudible 00:27:47] who's on our board and he's the head of biomechatronics at MIT. He's a double leg amputee. And he's been trying to work on this idea of you think about a movement in your leg or your hand and it happens. And I still don't understand it. I still don't get how somebody can think point your finger and then your prosthetic finger points. I still can't quite connect the dots.
Nicole :
So in theory, that is exactly what CoApt does. And I say in theory, because when I think, okay, so I'm going to do my best to explain this in a colorful way since you [crosstalk 00:28:27].
Erik :
Yeah. For idiots.
Nicole :
Yeah. That's all right.
Erik :
No. Just wanted to get Tom.Don't worry.
Nicole :
So I just have the end of... It's about two inches after my elbow is where my arm actually ends. So it just kind of comes to a circular end. And I still have muscles at the end of my arm. But when I think in my brain, Nikki close your left hand the muscles at the end of my left arm, they move a certain way. When I think open your hand, I open and my muscles move a completely different way. So it actually is pattern recognition, software that is inside the computer.
Erik :
It's the muscles in your forearm though, obviously, because there are no muscles in your hand so [crosstalk 00:29:17].
Nicole :
Correct.
Erik :
Right.
Nicole :
Yep, yep. You were spot on. But for me it feels really intuitive because I'm literally thinking in my brain close your left hand, even though I don't have a left hand. But that's what I'm thinking. And my muscles respond and do that muscle movement, which then allows the end terminal device, the literal bionic hand to then follow suit and actually close. It's Star Wars level stuff. It's really amazing.
Tom :
So one of the things that... You've given us the full journey of your experience and you opened by talking about what you would have wanted for yourself, right? What I would love to know is what would be the specific message that you would love to pass on to a young person today that might have the same barrier that you had or something similar.
Nicole :
Sure. The world does treat you differently. And that is okay. Let's learn how to respond. And let's learn how to ask the world around us to tear down these barriers that exist. Let's stop and take the time. It's nothing wrong with us. It's not, we need to try a little harder. We can do a little bit better. It's no, let's stop for a moment and really look at the world and what barrier is there.
Tom :
Yeah.
Erik :
And Tom, every time you go esoteric, I'm going to go non esoteric.
Tom :
Okay. Love it.
Erik :
[inaudible 00:30:43] go opposite. Every time I'm going to confront you at every turn because I want to know... I mean, I would assume you're fashionable right being Miss Iowa. So you paint your right fingernails. Can you paint your left fingernails like the same color?
Nicole :
I love this range in questions so much. I cook. Okay. So yes, I do paint my own right hand nails.
Erik :
[inaudible 00:31:12] finger nails to match.
Nicole :
That would be fair. I don't paint the bionic hand fingernails only because the look and feel of the current indeterminable device, bionic hands that I have is really futuristic looking. It's black and white and color. It has the literal word B, bionic on the top palm. The back of the hand, I guess, is what it's called. And you can see kind of all the pins and pulleys and wheels that are there to put it together. So it looks almost too futuristic too. It would totally take the futuristic feel away if I painted the fingernails. So I haven't done that. No.
Erik :
Maybe there should be like a fashion model though, or something. Get Blair on that.
Nicole :
It's a great idea. I love it.
Erik :
All right.
Tom :
Yeah. I think what we're all wanting to know, Eric is what is your left fingernails painted? What color do you go for?
Nicole :
Good question.
Erik :
Dirty, unwashed, yellow.
Tom :
Right. Yeah.
Erik :
Gnarly. Because I tear my fingernails off climbing.
Tom :
Right.
Nicole :
Yeah. Yes.
Tom :
Well, Nicole, what is next for you? I mean, you've obviously had this incredible journey that's taken you to Miss Iowa, to Miss America pageant, to a journalism degree I think at Medill at Northwestern, right.
Nicole :
Yep.
Tom :
And now to [inaudible 00:32:45] What do you have in front of you that you're most excited about?
Nicole :
There's no real end goal other than just try to connect with as many people as I can, and hopefully listen, and share and hear and move forward. And just being with those people as well, change perceptions, change hearts, change attitudes, give information that that helps all of those things. It's very simple.
Tom :
Yeah. Well, you lived it. You lived in that space, so it makes sense. You want to provide that resource for others that were there. And I think that a lot of times in No Barriers, we talk about this concepts that we have within our organization of elevate. And it's that whole notion of sort of making sure that you're... One of the things that are sort of the world based on the gifts that you've received from your own journey. So I see you as somebody that is continually elevating through your words and your work.
Erik :
And Nicole, just what a powerful journey. I mean, I don't think this is your primary job, but I mean, you're such a great spokes person for CoApt and for all the things that we've been talking about in the last hour or so. It's been really great and I've loved your perspective and your discoveries along the way. So just keep it up, keep driving forward because the world needs you and all these incredible technologies.
Nicole :
Thank you.
Tom :
I echo all of those comments from Erica. I wanted to thank you for joining us. And in addition to that, for bringing us some new sort of words and language that we can think of is in addition to all the inspiration that we give to make sure that there's information that goes alongside that, because you definitely bring that with every video, with every talk, with everything that you do. It's great for you to share that wisdom with us
Nicole :
I appreciate that so much. It's so fun to get to know both of you. And I look forward to getting to know the organization more in the future and having our paths cross. Thank you so much you guys.
Erik :
Thank you, Nicole. Thanks, Tom.
Tom :
Thanks Nicole. Thanks Erik. Thanks Pauline.
Erik :
All right. No barriers to everyone.
Tom :
Take care now.
We would like to thank our generous sponsors that make our No Barriers Podcast possible. Wells Fargo, Prudential, CoBank, Arrow Electronics, and Winnebago. Thank you so much for your support. It means everything to us. The production team behind this podcast includes senior producer, Pauline Shaffer, sound design, editing, and mixing by Tyler Cottman and marketing support by Heather Zoccali, Stevie DiNardo, Erica Howey and Alex Schaffer. Special thanks to the Dan Ryan band for our intro song, Guidance. And thanks to all of you for listening. If you enjoy this podcast, we encourage you to subscribe to it, share it, and give us a review. Show notes can be found at nobarrierspodcast.com.
