Podcast

Episode 113 – Justin Skeesuck and Patrick Gray, Putting the Person First

This week we continue our special series on the Art of Difficult Dialogue by welcoming back our friends Justin Skeesuck and Patrick Gray. You may remember that Patrick and Justin appeared on our show in 2018 to share with Jessica their remarkable story of traversing the Camino de Santiago – an epic 500 mile journey. This friendship and adventure was captured in their book and film, both titled I’ll Push You. Today, Justin, Patrick, and Jessica get very candid about how conversations regarding individuals with disabilities can go very wrong. However, they’ll also share thoughtful advice for changing the trajectory to a more honoring and affirming dialogue.

Transcript

Jessica: Hey, everyone! Welcome back to the Going Scared podcast. This is your host Jessica Honegger, founder of the social impact fashion brand Noonday Collection. Join me here every week for conversations on living lives of purpose by leaving comfort and going scared.

Now, if you haven’t subscribed to the podcast yet, make sure you subscribe. That way you get these conversations hot off the press right when they drop every single week.

I’m excited to have my first ever returning guests to the show. Patrick Gray and Justin Skeesuck. Patrick and Justin were among our early guests on the podcast back in 2018 and shared their wonderful story of committed friendship as Patrick pushed Justin in a wheelchair the entire Camino de Santiago, a popular pilgrimage through Northern Spain.

They’re back on the show, and this time we are connecting about conversations around disability. If you all of a sudden feel a little nervous or have even been thinking of the topic, please go ahead and give it a listen.

Patrick and Justin are light and open, hilarious, and generous. And they will have you checking your own biases about disability and your assumptions of people who live with different abilities. Beyond that, they’ve dedicated their lives’ work to cultivating a appreciation for adventure, friendship, and connection. Here’s my conversation with Patrick and Justin.

 

Justin Skeesuck and Patrick Gray: Putting the Person First

Jessica: So, you guys were back on the show in 2018, and we were just getting the podcast off the ground. For our listeners that may not have had the chance to listen to that episode, give us just a quick tour boat, share a synopsis of your incredible journey through the Camino Santiago and your background story.

Justin: Yeah, do you want me to go, Pat, or are you…?

Patrick: Go for it, bullet points.

Justin: Bullet points. Well, Patrick and I have known… we’re best friends, we’ve known each other since basically when we’re babies. 36 hours apart, same hospital, parents knew each other, the whole deal, grew up together. In 2014, we decided to do something pretty stupid but yet awesome at the same time, which was to complete the Camino de Santiago. It’s a pilgrimage, it’s a 500-mile pilgrimage across northern Spain, that’s the route that we took. And actually, I have a disability, I have a progressive neuromuscular disease. It’s called multifocal acquired motor axonopathy and it’s basically almost identical to ALS or Lou Gehrig’s disease.

So, my autoimmune system attacks my nervous system and then my nervous system shuts down, it doesn’t work anymore. So, it’s not a good prognosis, most likely it will take my life early, so it’s forced me to see life in a different light. But I’ve been very fortunate to have not only Patrick in my life since day one, but also, you know, I’ve an amazing wife and kids and support family and support group around me. So, yeah, and that’s led to speaking, books, all sorts of things that we do. So, we take people with disabilities on the last 100 kilometers of the Camino, we did that last fall. So, man, we have a lot that we were up to but that is like the super-short nutshell of it.

Jessica: Patrick, why don’t you give your side of the story on how… yeah.

Patrick: Yeah, so I’ll just fill in just a little bit here. I mean, like Justin said, you know, friendship our whole lives and we just kind of the kind of people that we’d much rather share adventure than hold things to ourselves, you know, just the idea of experiencing things with other people is exciting. And so, when Justin had this idea to take on this 500-mile wheelchair journey across Spain, I was like, "Yeah, I’m all in," so my response to him was, "I’ll push you, and that’s what led to a film and to our first book. And like Justin said, with the speaking side of things, we have been blessed to meet so many people as we get to travel and, you know, engage in conversations at different conferences.

They really have opened our eyes to… man, there’s just so much… one, there’s so much hurt out there but two, there’s so many opportunities for us to be a positive vehicle for change in every scenario, whether it’s about our faith, about politics, about disability, you name it. There’s so many opportunities that we often miss because we’re distracted or we’re scared or just unsure of how to engage. And so, that’s really been kind of a driving force behind a lot of what we do is trying to help people just see that there’s so much more we can do and just hopefully invite people into the conversation about what it means to live and love well.

“That’s really been kind of a driving force behind a lot of what we do is trying to help people just see that there’s so much more we can do and just hopefully invite people into the conversation about what it means to live and love well.” Patrick Gray

Jessica: You know, as I was thinking about our time together today and what our listeners don’t know is that we recorded another episode previously, right? Absolutely, the sound did not work so we had to completely ditch it, but it was a very, very rich conversation. And the one thing that stuck out to me is Justin saying… I asked Justin, I said… and when Justin says he is not mobile, is it basically the neck up that is mobile at this point, Justin?

Justin: My mouth, yes.

Jessica: His mouth is mobile. Thank God because a lot of beauty comes out of your mouth.

Patrick: There’s days, there’s days.

Justin: Yeah, I think there’s times where people want me to shut up but, yeah, you know, my disease has affected almost everything, I mean, from the neck down, so I can’t feed myself, I can’t, you know, go to the bathroom, I need help getting in and out of bed, you know, showering, the whole gamut is… I need help in my life.

Jessica: Yes, yes, you do, including just getting your microphone help, I was just having this moment of empathy of, "Oh, my gosh," you know, Patrick and I are testing out the microphone but you literally have to have someone there to help you do all of that. And with that context, in our last conversation, I asked you what percentage of the time you wake up grateful, like automatic grateful? You don’t have to, you know, practice gratitude to get there, that you’re laying in bed. Do you remember what you said?

Justin: No, I don’t.

Jessica: You said 98% of the time.

Justin: Hey, all right. There we go. I knew it was high, but I didn’t know exactly…

Jessica: Maybe you were having a real good day then but that really stuck out to me. And I was rethinking about your journey on the Camino in light of the topic of this podcast, which is recovering the lost art of dialogue, of difficult dialogue. And your journey on the Camino, which, you know, you have a documentary film about it, it’s beautiful, everyone must go watch it, but I imagine that this open-heartedness to walk with people that believe differently than you, that are just in a whole different walk of life than you, but since that first Camino walk, you guys now take other people on Camino walks but you’re doing it in the context of a mission of helping create dignity for people that have disabilities. Tell us what that experience… you know, how is your experience of embracing, taking people on the Camino, even going on the Camino itself to help you kind of check your own biases and walk more open-heartedly towards other people.

Patrick: Yeah, I’ll start, I’m sure he has stuff to fill in. But, man, that’s a loaded question, Jessica, because I think that like so many things, our understanding of why we do things, who we are, and how we function evolves as we experience different situations. And so, when we went into this whole Camino thing of doing the accessible Caminos, it was really kind of came out of people reaching out and asking, "Man, I’m in a wheelchair and my friend is in a wheelchair, my wife’s in a wheelchair, we’d love to do the Camino. What does that look like? Can you help us?" And after about, I don’t know, six or seven people reaching out, Justin is like, "Man, maybe we should do something about this."

So, really, it was kind of his idea at the beginning and it evolved as we had these conversations. So, we are able to pull this thing together, we have, you know, 10 people in wheelchairs, a lady who’s visually impaired, and 37 helpers that wind up coming together to go over into the Camino together. And so, it’s the last, like Justin said, you know, 100 kilometers or so. And I think that our understanding of why we are doing it didn’t really solidify until we were on the trail and witnessing this thing unfold because what happened is that we had people… we had liberals, conservatives, you know, Republicans/Democrats, we had Gay/Straight, we had people who were disabled, people who, you know, are able-bodied, we had, you know, people from different countries, people from different races.

And we watched all of these people come together where none of that mattered. No one cared about any type of difference that was present. The only thing that mattered was that we were banding together around one common goal of helping people experience something they otherwise would never have been able to experience. And that’s when it kind of clicked like, "Oh, this is why we’re doing what we do." It’s beyond just the disabled component, which is huge, it’s so important, but it turned into ‘this is a place where humanity can come together and shine and be what it’s meant to be.’ To really press into each other’s stories in a way where we understand that every moment is an opportunity to, like, leave kind of a mark of our lives on somebody else in a positive or negative way and these people shows a positive path.

“It’s beyond just the disabled component, which is huge, it’s so important, but it turned into ‘this is a place where humanity can come together and shine and be what it’s meant to be.’” Patrick Gray

And these people are still friends. I mean, we see it, like, almost weekly, something on Facebook or we have a Whatsapp group where people are meeting up from all over the country to… well, not so much right now because of COVID, but to hang out, to go and grab a glass of wine together, to go hike together, they didn’t know each other before. And that’s now the motivating factor of why we were continuing to do this kind of missional mindset around the Camino is that, man, every time we bring people together, we’re able to kind of sit back and watch what was an incredible experience for us unfold through the eyes of somebody else, and it’s one of the most… it could be the richest experiences I’ve had in my life.

 

Push Beyond Your Limitations

Jessica: Justin, I’m curious about you because I know… you know, when I first encountered your story, at first, I was like, "Oh, my God, I can’t believe Justin trained to do that." And then by the end of really getting to know your story, reading your first book, and watching the movie, I thought, "Holy cow, Justin is so vulnerable to put himself in this position of constantly needing help." And you put yourself out there and I’m sure along the way, you are getting helped by all sorts of people that maybe if they were back in your hometown or something else, you wouldn’t naturally be friends. So, yeah, tell us about that experience.

Justin: Well, yeah, I mean, you’re right. I mean, to be… you know, and I didn’t even fully grasp, on our first pilgrimage, I didn’t fully grasp what I was getting myself into, I don’t think Patrick was either, but, you know, from many aspects, physical aspects, emotional, spiritual, everything. And it took me a while on our first pilgrimage, we’re probably 350 miles in, plus, somewhere around there, and I remember this very clear morning, we stopped for coffee at this town, I don’t even remember the name of the town, and it happened to be a bicycle race, our second bicycle race. The first one we got actually caught in the middle of, which is kind of a funny story, but the second time it was just kind of going by on the streets and so we just stopped and kind of watching it.

And just for some reason, my mind was just wandering, and I realized that by being in my… I took a specialized wheelchair, it’s like an off-road wheelchair that, you know, I don’t have any… when I’m in it, I have to rely 100% on somebody else getting me from point A to point B. So, I have no independence at all whatsoever, it’s completely stripped away. I mean, I use a power wheelchair now in my daily life and that’s how I get around but, you know, when I’m in that off-road chair, I’m 100% reliant upon somebody else. And so, I mean, I’m not kidding you, it’s everything in my life, everything at that point. And so, I realized that by being in that chair, I was able to accomplish so much more than if I were to hold on to my last independence that I, you know, have.

And there was kind of a switch, kind of a final switch that was made, you know, in my soul that, you know, we’re not meant to live alone. I mean, no matter what we’re all walking through in life, we’re not. I mean, we have to work together, we have to live together and be together and love one another. And by opening myself up, it was a true testament to myself to see, A, if I could do it, and then B, what it would look like to have people come in and just be a part of, you know, our story or my story or whatever that looked like. And it was amazing just to see that unfold in front of me. And, you know, we have many, many stories we could share about all of that, and I encourage people to watch the movie or read the book, it goes into a lot more of that.

But by being vulnerable and putting yourself out there, the initial fear is, "Well, am I going to be rejected?" Or, "Is anybody going to help?" or "Is anybody gonna care?" And what I found is that it’s completely the opposite. There’s a lot of people that care, there’s a lot of people that want to help move you forward in life, they just need the permission to do so. And when you give somebody permission to come into your journey, A, it makes life easier. Not to say life is easy because it’s not, but it makes life easier, more fun, more rich. And, you know, you share the burden, you share the heartache, you share the good, the bad, everything in between, and it makes just life so much more fun in my opinion. So, I wouldn’t change it for anything. So, it is a little scary to let just strangers come in and help you but it’s worth it. Totally worth it.

“There’s a lot of people that care, there’s a lot of people that want to help move you forward in life, they just need the permission to do so.” Justin Skeesuck

Jessica: As you both are talking, I just couldn’t help but think about one of Brene Brown’s key findings in her research is that one way to bolster our belief, that our connection to one another is inseparable is to seek out moments of collective joy and pain with strangers. And she often talks about sporting events and, you know, music, going to music venues, seeing a play, and she says that moments that remind us of our common humanity, a foundation that can support us later when we find ourselves in conflict, we have to catch enough glimpses of people connecting to one another and experiencing shared emotion that we believe in our inextricable connection.

And it’s just so true, and so you’ve created this collective experience around, "We can still appreciate beauty and nature and we can still do an insane adventure that many able-bodied people would never attempt to do," and you are able to find this place of belonging around that mission. And it reminds me the same thing at Noonday, we have people in our community that are of so many different political beliefs, so many different racial beliefs, I mean, all the gamut of diversity is present. But what’s uniting us is this mission, this shared belief that we can build a flourishing world, we can help others emerge out of poverty by creating a marketplace for these artists and goods.

And so, it’s so powerful to have these collective experiences and I think that’s something that makes this pandemic during this political election so hard is that we lost a lot of those things that brings us together as humans, where we can override some of those things that divide us and we can cheer for a certain team, you know, in football, or we can go and enjoy the same music together. What do you think are those things that can help bring us together right now in our current situation where we are more at home?

 

We Are Better Together

Justin: Yeah, let me chime in here real quick. I think one thing that I’ve done… and this is a real… because people want… from what I gather is some people just want a straight like, "This is how you do it." Well, there’s no one way of how you do it. But what I found… and I know Patrick has done this too, and Patrick and I, in our business, we have a monthly program where people join and it’s kind of a private member’s group. And we challenged people with this last month, which is: if there’s somebody on your heart, your mind, or whatever that is, if you’re thinking about somebody, there’s a reason why that is, there’s a reason why that person is coming to mind. And it’s maybe somebody you haven’t talked to in quite some time, it could be somebody you see quite regularly, maybe they’re just on your heart, and we just challenge everybody to reach out and just say, "Hey, how are you doing?"

You know, call them, text, send a letter, write like an old school letter, you know, with the stamp and everything. Just whatever, just reach out and just say, "Hey, I’m thinking about you, hope you’re doing all right. You know, if there’s anything I could do, let me know, whatever." And it was really cool to see the response from, not only my experience of reaching out to somebody, you know, a couple of people that were just on my heart and I haven’t talked to and some people I haven’t talked to in a couple of years, you know, and I was just thinking about them. And so, I would just encourage somebody to do that. It’s a little thing that just goes so far when we’re at home and we’re in our own little world, you know, for the time being.

Patrick: One of the biggest, I would say, challenges that I feel we’re facing and what I see with social media or, you know, even conversations on the street sometimes, is that the art of civil discourse, it seems to be gone almost. And there’s such a low capacity for people to listen, to understand, someone else’s point of view, we’re constantly listening to respond, to just get enough information, to be able to, you know, have some type of, you know, rhetoric that bolsters our opinion and beats somebody else down. This seems to be the common thread in our society right now. And I have never, not one time have I been in a situation where either I’ve chosen to or someone else, more often someone else has chosen to listen to understand what I’m saying that it hasn’t gone well.

I’ve always learned something, I’ve always grown, I’ve always walked away with a deeper appreciation for the person who’s on the other side of the fence, if you will, because either, A, they respected my opinion and listened or B, in my choice to listen to what they’re saying and really try and digest it, I learned something new. And we’re in a time where there’s all these lines that have been drawn, these chasms that we stand on the opposite sides of. And the only way we’re going to be able to navigate this effectively is if we’re willing to step up to those chasms and build a bridge across it. We have to be willing to build a bridge, we can’t stand there and just…

“We’re in a time where there’s all these lines that have been drawn, these chasms that we stand on the opposite sides of. And the only way we’re going to be able to navigate this effectively is if we’re willing to step up to those chasms and build a bridge across it.” Patrick Gray

Justin: Shout.

Patrick: Just shout and just be angry and just try and focus on our side without trying to reach out in some way. And so, some people, they are really hard to reach out to, there are people out there that are so hard to love. But I come back to Matthew 22 or Matthew 25, especially right now, over and over and over. I mean, when Jesus was asked, you know, "What’s the greatest commandment?" You know, "Love your God with all your heart, mind, and soul," then he goes on in Matthew 22 to say, "Love your neighbor as yourself." The second is like that. Like, that’s big, "Love your neighbor as yourself." And your neighbor is not the person that you live next door to, it is anyone you come in contact with at any point in time.

That means if you’re on social media, that’s your neighbor. Whether you like it or not, you got to love that person, that’s what you’re called to do if you’re gonna take Jesus’ words seriously. And then what does love look like? Well, let’s go to Matthew 25 with the goats and the sheep, "Feed the hungry, clothe the naked, you know, the widows and the orphans, visit those that are imprisoned." Ultimately, if we want to stand up for the Jesus that we claim to believe in, if we want to have a position of faith that really rests in who he was and is in his words that he spoke for a reason, then every behavior that we participate in has to be measured against. Are we loving our neighbor? And does that look like Matthew 25, the goats and the sheep?

Because ultimately, if we’re not loving our neighbor, we can’t love God. We can’t participate in loving the creator if we hate His creation.

Jessica: I would love to talk about how we love those that are differently able among us and first, before, let’s just clarify. Politically correct, Justin, is it differently abled, disabled? What do you prefer?

Justin: Well, it depends on the context. Usually, you say people disabilities, you know, you put the person first, it’s person-first terminology. So, you know, differently able is okay but it’s more like… you know, it’s either just people with disabilities or, you know, the disabled community as a whole. But if you’re talking to somebody in a house context, you would say, "Here’s my friend Paul who has cerebral palsy, you know, he might be a little…"

Jessica: Yeah, you know, and just summarize someone with like, "Here’s my disabled friend."

Justin: Yeah. You know, there is… and we can get into the weeds on this. I mean, there is terminology, like I’m not wheelchair-bound, I’m not bound to my wheelchair. I use a wheelchair for my mobility, I’m not confined to it, I’m not strapped to it.

Jessica: Gosh, that’s so good. You just got me to check off one of my microaggressions right there that I didn’t even realize.

Justin: Yeah, you know, it’s a common thing. It’s okay, I mean, it’s not…. there’s education to be done in that world just to kind of steer somebody in the right direction. But, you know, I would never say, "Here’s my friend, Jessica Honegger, who’s a woman," like, that doesn’t make any sense. Like, you know, you’re Jessica, that’s it. You know what I mean? Pat is Pat, Patrick is Patrick, I don’t say, "Here is Patrick, he’s 6’3," like, I don’t do that, you know? Though, you know, when it comes to people disabilities, it’s usually just person-first terminology.

 

Engage in Affirming Dialogue

Jessica: Okay. I’d love for you all to school us and perhaps…and this is a vulnerable question for me to ask so feel free to punt it, do some things stick out in your mind where you’re like, "This is the wrong way to do it”? Like, when you encountered someone who was just ignorant or… you know, name us some of the wrong ways where you feel dehumanized by the way someone else has treated you? What are some of those examples?

Justin: I’ll give you a quick one. You know, Patrick and I travel a lot, and we travel all around the country, even international to do what we do, and there’s been many times where, you know, I’m checking in at an airline counter and the person behind the counter is talking to Patrick but he or she is referring to me. So, they’ll say… they’ll look at Patrick and say, "Does he need this and this and this?" You know? And Patrick knows better and so he’ll be like, "Why don’t you ask him? He’s right here." You know?

Patrick: "He’s right here."

Justin: Yeah, "He is right here." I mean, he does it in a very polite way, he knows how to redirect because he knows me very well. So, you know, he’ll know how to redirect and soften to kind of corral somebody or, you know, kind of point them in the right direction. Or sometimes I’ll just speak up and just say, "You know, you can ask me, I’m right here. So, you know, I can talk to you, I have a brain." You know, there is some instances where… you know, it happens a lot when we travel, Pat.

You know, checking in, you know, it’s just people not being aware of what they’re really doing and so we just kind of look at it as an opportunity to kind course-correct them. When we talk to media, they use terminology like I mentioned prior, you know, wheelchair-bound, -confined, -stricken. You know, I’m not stricken with something, I happened to have a disability. So, you know, it’s just kind of giving people the right terms. Is there anything else I’m missing, Pat? I mean, I imagine there’s probably a lot of things but…

Patrick: Well, no, I don’t think there’s anything you’re missing. It’s just one is that person-first mindset, that’s so critical, you know, which you hit pretty hard and it’s just everyone’s a person first, always, always, always. They happen to play sports, they happen to do this, and they have to be in a wheelchair. But one of the things I’ve appreciated about you specifically, Justin, in situations that you’ve done really well at. With Justin, when the kids are curious, I mean he just jumps in and engages them like, "Yeah, this is my wheelchair," you know, and he just talks with them and it’s an opportunity to kind of educate them a little bit and break down any type of, you know, reservations or maybe even fear around what they’re seeing because it’s so different.

But when individuals approach Justin, when they’re, you know, bold enough to say, "Hey, you know, my kid is curious about your wheelchair," I’ve never seen that go wrong where, one, now this kid can kind of… his curiosity has been validated, right? And then he gets to have a conversation with someone who looks and sees the world differently than he does but is a person too, or she does, but is a person too. If people wouldn’t be so afraid just to walk up and say hello, ask how their day is going.

I mean, if you walk by someone in a doorway and they’re close, you say, "Hello," or, "Excuse me," or whatever. Like, engage with somebody in a wheelchair the exact same way, engage with someone who uses a walker the same way, engage with someone who’s on braces or an amputee the exact same way, and just don’t even let the disability be a deciding factor as to why you do or don’t engage. It just might wind up being a part of the conversation later. Does that make sense?

Jessica: Yeah. Justin, earlier when you were talking about your Camino experience, you use the word ‘permission,’ that people just have been needing that permission to help. So, what does it look like to give that permission and what does it look like to ask for that permission?

Justin: To give it and to receive it are two different things. I think a lot of people that I’ve come across, including myself to a certain degree, I’ve had to learn over time, is to just put myself out there and sometimes it goes… you know, it doesn’t go exactly the best way that it should sometimes, but I’ll probably say more often than not, way more often than not, it always goes well. So, I found that, going through our first pilgrimage, that one of the lessons that I learned was that people are still inherently good, there’s a lot of good people in this world doing good things. No matter what we believe in certain things, everyone still wants the best for everyone else, more or less. You know, there’s a few bad apples, right? But don’t let the bad apples dissuade you from being good or to asking for help, you know, or to put yourself into a situation where you’re gonna be reliant upon help.

“I found that, going through our first pilgrimage, that one of the lessons that I learned was that people are still inherently good, there’s a lot of good people in this world doing good things.” Justin Skeesuck

So, it’s a muscle that needs to be flexed quite often. So, if you don’t do it very often, it’s going to be much harder every time you do it, but the more often you do it, the easier it becomes. So, it becomes more natural. So, I’m at the point in my life now where… I mean, it will drive my wife nuts because I’ll just be like, "Hey, can you help me?" I mean, some stranger, I mean, we’re at our community pool where I live, you know, there’s no lift for me to get in and out of the pool. So, I have like a little lift sheet that I put underneath me and then it takes, what, maybe three or four people, strong people to kind of pick me up because I’m heavy. And so, you know, I’ll just go to somebody, I don’t even know these people, and I’ll just go like, "Hey, man, would you be able to help me to get me in the pool?" And every single time, "Yeah, sure."

You know, they’ll get up and, you know, then they’re like, "Yeah, come on over," they’ll come on over and, "Hey, I’m John," or, "I’m Justin, you know, nice to meet you, thanks for your help today." "No problem, appreciate it, just let me know when you’re done, and I’ll help to get you out." I mean, it’s easy as that. So, you know, I’ve met a lot of really cool people that way just because I really don’t care. I’ll just go ask, you know, "Hey, can I get your help with this?" And every single time… I mean, there is maybe 1 out of 1,000 that might say, "I don’t know, I can’t because of my back," or whatever, you know, but almost every single time, everyone is like, "Yeah, cool, I’ll help you, no big deal," and that’s it.

 

How to Help

Jessica: Patrick, what about you and offering help? Because I know that on the Camino walks, there are a lot of ranges of people with disabilities and is there that balance between, "Okay, well, I don’t want to offer help and demean them that they could do this," you know, and… I’m constantly striking that balance when I’m hanging out with Tessa, my friend’s daughter. She’s my friend, Tessa is my friend, you know, that has only one arm and she is an incredible swimmer and that is what can shock people. So, on that day when we’re at this public swimming pool, she just scooches right in, jumps in, and just swims. And at one point during that day, there was a diving board at this public pool, and she goes, "Mom, can I go diving?"

And Megan said those are the hardest moments for her because she wants to say, "Yeah, go diving," but then also there’s all these kids hanging out by the diving board. But Megan has just done an incredible job parenting Tessa and Tessa just scooched on over to this diving board, lifted herself up on a handstand on one arm, got herself up onto the diving board, scooched off, and jumps into the deep end and all these little kids are just staring like, "I’ve never seen anything like this." And by the end, Tessa had all the little girls, you know, just like playing a game, playing together, Marco Polo and all of these things and it was such a beautiful thing to see. But I’m sure in that moment, I do see people kind of go, "Do I offer to help? Do I offer to pick her up to put her on the dive?" You know, so how do you balance that, you know, offering without being asked?

Patrick: You know, it’s challenging for sure because every situation is unique, you know. And the Camino itself, you know, people have chosen to go on that with us, they’ve already given permission to a lot of people there to help them just by the nature of going and that is kind of the dynamic that’s at play. So, it’s a little different there than in everyday life but, you know, the biggest piece that I found… and we saw this with a lot of the volunteers that came to help, you know, they were like, "What do I do, how do I navigate this and ask without presuming anything?" If that makes sense.

And what I mean by that is… like, I think of a young woman, Carly, and there’s also a young lady, Shar, they’re both paraplegics and so they’re able to use their arms, you know, quite well but they can’t use their legs but they’re so independent. These are some of the toughest, strongest women you will ever meet. But there were times that they were in over their heads in the trail and would need some assistance. So, I just told them, "Hey, I’m ready to help you out any way you need it but I don’t know exactly how you need it, you know your body better than I do. So, I’m here, you guide me."

“So, I just told them, ‘Hey, I’m ready to help you out any way you need it but I don’t know exactly how you need it, you know your body better than I do. So, I’m here, you guide me.’” Patrick Gray

And in that situation, you know, they said, "Hey, you know what, it’s getting a little tough here, can I get a push?" "Sure, jump in." And the more we did that back and forth, the more willing they were to have me come in and help kind of augment those moments where it’s just a little more of a struggle. But it was really making sure that they were always in the driver’s seat as far as when and how I was going to help. And I’ve seen this before where people just kind of assume, you know, they jump in, you know, "Hey, I’m going to grab your tray for you for your food," and the person in the wheelchair was like, "No, I got it."

You know, like, don’t just do it for somebody, just ask. It’s just like, "Hey, can I help you?" Don’t even say how you can help them, don’t even say, "Hey, can I grab your tray?" It’s just like, "Hey, happy to help if you need any help," "No, I got it," or, "Yes, can you grab my drink for me?" You know, they’re gonna let you know, especially if you approach it from that standpoint of, "I’m ready and willing but you tell me what that looks like."

Jessica: I love that, "Happy to help if you need me to help." That’s everything, just try that phrase, everybody.

Patrick: Exactly.

Jessica: Hold that one out.

Justin: Yeah. And respecting the no.

Patrick: Yeah, the no, you would really get no’s because here’s the deal…

Justin: Don’t take it personally, don’t take it personally.

Patrick: Yeah, don’t take it personally, people are incredibly adaptive, they’re so adaptive. You were talking about the diving board incident, I was thinking two summers… or not two summers ago, two winters ago, my son and I were up at the ski mountain, he was snowboarding, and we happen to have the… there was kind of a traveling group of individuals with disabilities, kids with disabilities who are skiing and snowboarding. And, Jessica, this blew me away, this gal couldn’t have been more than seven or eight years old and she had no arms and she’s snowboarding. Like, "What in the world?"

And then she just eats it, she just goes down hard on the kind of training hill where they’re kind of getting their few underneath there… or they’re kind of just getting the feel for the snow because they’re from all over the country. And I was ready to go over there and pick her up and then I see her dad coming over and he’s like, "You got this, girl, show them what you can do," you know, kind of thing, you know? And she does that… you know, that martial arts move kind of thing where people, like, kick their feet up and land on their feet?

Jessica: Yeah, yeah.

Patrick: She does that on her snowboard, with no arms. I’m just like, "Whoa." So, here’s this kid that… I mean, so many people can figure out how to navigate in so many situations even though it looks different than what we do, and so always come into those situations thinking, "Okay, they probably got this, I’m just here as backup in case they need it."

Never insert yourself as a solution, though.

 

Build a Ramp for Others

Jessica: Okay, I have to go back to this. I’ve never had the conversation I’m about to have ever out loud. It’s not a super scary question, it’s just something I’ve never asked about. You mentioned that your local pool doesn’t have a lift. Let’s talk policy. I mean, have you… you know, I have to say, when I travel… and you guys know I travel internationally a ton and I’m always aware of, "Oh, my gosh, this place is not ADA compatible at all, like, in any which way." And then in America, you know, I’m often notice how all of the compatibility measures and all of the laws that have been passed over the years because of that.

Are there certain policies that are up for grabs during this election cycle or where are we at as far as still needing some more certain codes where it’s required that you have ADA compatibility in a public pool? Tell me about that because I’ve never really asked anything about this.

Justin: Yeah. Well, let’s have a see here. So, you know, the American with Disabilities Act was passed in 1991?

Patrick: Yeah.

Jessica: Gosh, just in ’91, wow.

Justin: Yeah. So, think about that. I mean, 30 years old and, you know, there’s still a probably a long ways to go. You know, I’ve traveled enough international to know that once you leave United States borders, accessibility goes right down the tubes, you know? So, I’m very grateful for the Americans with Disabilities Act. There’s also the Air Carriers Act, so ACAA, that’s a big one that protects people with disabilities, of all kinds of disabilities, when they travel, so airfare, which is… airlines are notorious for not exactly treating people with disabilities the best that they could. So, they’ve come a long ways but there’s still a lot of improvement on that front.

So, as far as current policies, I wouldn’t be able to chime in on that one because I don’t know exactly. I don’t know if Pat does either but he can say so if he does but, you know, in the global disability world, you know, there are some countries that do really well and some that don’t even care at all whatsoever. Actually, they view people with disabilities as either cursed or, you know, way less than human just because of the way they’re born or maybe something has happened to them. So, you know, I always have to understand that whenever I’m traveling somewhere that people may not view me as equal. And I’ll give you a very quick example of something that happened to me that has a really cool outcome but at first, I was like, "What in the world is going on here?"

So, before we even went on our pilgrimage, Patrick and I… I was living in San Diego, California, we live in Idaho now but my wife and I decided that we’re going to move to Italy for a while. So, you know, with my kids and we just kind of rented out our house and just rent an apartment in northwest Tuscany. And we found this, we lived in a town called Lucca, L-U-C-C-A, right about 15 minutes, 20 minutes from Pisa, you know, in between Pisa and Florence. Beautiful old walled city, relatively flat. We were there for a few months and just kind of…. the first maybe week or two, I kind of zip around the town in my power wheelchair and people are looking at me weird, just kind of looking at me funny, like, "What are you doing here?" That’s like kind of the look on their face, like, "What are you doing here?" You know, and I started realizing there’s really nobody else in a wheelchair in this town.

And, you know, I would go to… I brought a little travel ramp with me that I had in a bag on the back of me because everywhere there’s a step, at least one step, so I have a little, you know, 20 or 24-inch ramp that I bring with me. You know, and my oldest son Jaden was about nine at the time and he would take it out of my bag and put it down so I can enter a restaurant or  a barbershop or whatever. And I would just kind of be… just do that and I wouldn’t really care what people were thinking about me necessarily. I could see that there was a look on their face, but I didn’t really think anything other than that.

And I remember the first time I went to a barbershop because I needed a haircut and a shave and it was like $3 to get a beard shave, which is really cheap. You know, compared to America, it’s like $30 to get one. Anyway, so I go into this barbershop and I remember the look on their faces. My son plops down my ramp, you know, I’m like a bull in a china shop. Like, I come, you know, in this barbershop and all these Italian old school guys are looking at me and like, "What is this thing coming in here?" I don’t speak Italian at all. And anyway, the barber gets me in position and asked me what I want, you know, and trying to navigate my way through it and it was a little clunky but whatever.

And, you know, after two months or a month and a half going there, I would go there and they’d be like, "Ciao, Justin," you know, "Como esta?" You know, like it was just that barrier was really… it was lowered, and I started having discussions with people of Italians and they’re asking me, "Why are you here?" And they’re asking me all these questions and I was like, "Why are you asking me these questions?" And they said, "Well, it’s not like we don’t view disabled people that bad, it’s just it’s too hard to go out, so why go out?" That’s the mentality they had.

So, it wasn’t like they looked at people disabilities as cursed or anything like that, it’s socially acceptable but they don’t see people in wheelchairs very often because it’s just too hard… you know, like I said, like I have to plop a ramp every time I go into a restaurant or whatever. People just view it that way but by the time my time was done there, you know, I’d see people on the street, and they would say, "Hey, how are you doing?" You know, I would go into a restaurant and one of the coolest things that ever happened to me was… I went to this pizza place that we would go to and it was a cousin of a friend of mine. He owned this place in this town, it’s just happened to be a cousin.

And the first couple of times we went there, you know, I plop my ramp down and go in, blah-blah-blah. And it makes a lot of noise, it’s a metal ramp on a cement step, you know, it’s not like this quiet thing coming in. By the third time I came back, the owner comes running out and he’s like, "No, no, no," I was like, "What did I do?" You know, like, "Am I not supposed to be in here or whatever?" And he starts rattling off in Italian, like super-fast Italian to somebody in the back in and he’s just like, "Wait here, just wait here, wait here." Before I knew it, some guy from the back comes out and plops down a ramp. He actually went and made one for me. The owner went and made a ramp for me so I didn’t have to put my own ramp down.

“Before I knew it, some guy from the back comes out and plops down a ramp. He actually went and made one for me. The owner went and made a ramp for me so I didn’t have to put my own ramp down.” Justin Skeesuck

So, it’s those kinds of things that by putting myself out there, it lets those experiences happen and I have many of those things. I mean, I’ve been picked up on a boat in Venice by, you know, nine strangers because I couldn’t get out of the boat because it was like a two-foot drop but there’s so many people on the boat to get me out of the boat. I mean, in my power wheelchair, my power wheelchair weighs 400 pounds and I’m 200, so it’s like 600 pounds of weight, you know? And, like, literally eight or nine strangers of all languages just pick me up and put me on the tug, it was like crazy. You know, I’ve had some really crazy experiences.

Jessica: I love that picture and I want us to close with that picture as we think about dialogue and our posture as we become listeners during a time where we really just want to defend our own opinions.

How can we build ramps for the person that we’re talking with? That’s just a beautiful picture. You had a physical ramp built for you, but we can build ramps as we engage in dialogue.

Thank you so much for joining us today, you guys, you all are always just an absolute gift to listen to. And we’re doing do a book giveaway, that’s what we’re gonna do for your kid’s book because it’s just such a powerful tool to begin to humanize and normalize people with disabilities and if we can start young with our kids, then, you know, we can create a new future.

Patrick: Yeah.

Justin: Yeah. Thanks, Jessica. Appreciate it.

Patrick: Yeah, thank you so much.

Jessica: Person-first language is something that I’m learning to grow in. Instead of saying “my adopted kid,” it’s, “no, my child who is adopted.” Instead of saying “my friend that is disabled,” we say, “my friend who has a different ability or who has a disability or who is differently abled.”

Actually, as I was reading a lot of anti-racism books as well, I noticed we used to say “slaves” growing up in school. I mean we would just say “slaves” and “slave owners.” And now I’ve seen a lot of that people-first language saying, “enslaved people” and then “enslavers.” And it’s a little bit of that nuance that helps you to not just think of a person as the wholeness of their difference, but really to put their human dignity first. It really matters.

I honor the work that these two are doing in creating awareness through their work and am moved every time I hear about that first pilgrimage story. To keep up with Justin and Patrick, find them at illpushyou.com and check out their newest book “Imprints: The Evidence Our Lives Leave Behind.” And go purchase their children’s’ book titled, “The Push: A Story of Friendship.” It’s a great way to introduce your children to this idea of normalizing people that are differently abled.

Make sure you head on over and review and rate the podcast because it helps more people find these conversations. I love what LumosImages said in August, “I’ve been listening for a while now, and I love the variety of topics that are covered. All of the guests are interesting in different ways and have so much to offer. I love that Jessica always asks the questions that are running through my head. I always walk away from this podcast feeling refreshed, renewed, and inspired. Thanks so much for that!

And also, if you ever wanna recommend guests for the show, we would love to here from you. The best way to do that is to DM me on Instagram @JessicaHonegger, two G’s, one N. And you can always follow the Going Scared podcast on Instagram as well.

Our wonderful music for this show is by my good friend Ellie Holcomb. Going Scared is produced by Eddie Kaufholz. And I’m Jessica Honegger. Until next time, let’s take each other by the hand and keep going scared.