Shane & Hannah Burcaw: Love is Not a Burden | The Man Enough Podcast
(upbeat music) - Hello, and welcome to Man Enough. I'm Justin Baldoni. - I'm Liz Plank. - And I'm Jamey Heath. - And, oh, we have Shane and Hannah Burcaw. Shane is an old friend of mine.
And I've known Shane for probably eight, nine years now. He was in the first season of My Last Days, which is a show I made about people with terminal or chronic illnesses. And Shane has a rare disease called spinal muscular atrophy, SMA, and he basically, he's in a wheelchair. He doesn't have full use of his arms or his legs. He needs a caretaker and Hannah is not just his wife, but his caretaker. And they defy a lot of the traditional conceptions about what marriage should look like.
And Shane especially, like what it means to be a man. And I am so excited to have them on the show because I have so many questions. - Me too. - And I've been following them on social forever and I'm really, I didn't even know that they'd been booked.
So, when it's like we were all connected with our minds because I've been really, really obsessed with them. Like a little, I've been in a little bit of a pair of social relationship with them and- - Oh, okay. - I kind of feel like I'm just their friend already, so we'll see if- - Well, let's get to it. Let's get to it. - Can't wait. Can't wait to hear it and learn some stuff.
- We'll be right back. This is Man Enough. This episode is brought to you by Proctor and Gamble. With over 1.3 billion people with disabilities across the globe. Currently, only 4% of businesses are actively developing products and solutions with this largest minority group in mind.
Through their brands, P&G is committed to serving the people with disabilities community with inclusive and accessible products. Herbal Essences was the first mass haircare brand in North America to introduce tactile markings to help differentiate shampoo and conditioner for those with vision impairment. Olay introduced an easy open lid in 2021, a prototype developed with and for people with disabilities with an easy-open winged cap, extra grip, raised lid, high contrast product label, and braille text to make beauty products more accessible. And Pantene has committed to bring NaviLens to point of sale and product - a unique technology for visibility impaired people who have difficulty using traditional signage and therefore cannot be autonomous in unfamiliar environments.
P&G recognizes that this is a long journey and will continue to work to create an accessible and inclusive world that benefits all. Hello, and welcome to the Man Enough podcast. We have a very special couple on the show today. A dear friend of mine and his bride, Shane and Hannah Burcaw. Hi, guys. - What's up.
Thank you for having us. - And I have not met Hannah in person. - Yeah, which is weird because you've seen me naked. (Liz laughs) - Okay. - No, listen.
Hannah gets to bathe this man who I love dearly. (everybody laughing) Hannah, it's so awesome to officially meet you. - It is so great to meet you. I've heard a lot. (Shane chuckles) You guys go way back, so I'm excited to finally meet you. - Can we clear something right before we get into this? Hannah, you reached out to Shane after you watched a documentary.
Was it, what documentary was it? Because I know someone who made a documentary about Shane right here in this chat. - Yes, it was that documentary. It was the Soulpancake video. - What? - Yeah. - Oh, my God. - Justin, you are literally like a significant reason that we are married and happily together for almost six years.
- What? - Yes. - Oh, gosh, don't tell him that, please, do not tell him. (everybody laughing) He likes to claim he's the reason for my own marriage and my wife because he introduced us. And so, every time we have a child he's like, "You're welcome-" - Wait.
(Jamey and Justin laughs) - First of all, first of all, Jamey, you say, I like to claim. You just explained that I introduced you. Second of all, Shane and Hannah, I did not know that. - Yeah, something about that video she saw through all of my terrible jokes and my potty humor. And she reached out and was like, "Hey." - Wow, so for anybody who doesn't know, I spent years making a documentary series called My Last Days about people living with chronic or terminal illnesses.
And Shane was a part of the first season of the show. We partnered with Soulpancake. We made that show for nothing and for the audience, Jamey was the composer of that entire season but there's so much more to talk about. Liz, can you tell the audience about Shane and Hannah? - Yes, where do we begin? Wow, what a beautiful intro. Also, Justin, I'm waiting for my match-make, since you've match-maked everyone on this podcast episode.
- (laughs) I've been thinking about it a lot. Actually, Liz, you are, I'm gonna be very, very, very picky with you. You're a diamond. - That's right.
- So sweet, all right, Shane and Hannah Burcaw, our relationship blogger is on a mission to change the way that society understands disability. On their YouTube channel Squirmy and Grubs, which has garnered almost a million subscribers, and world-wide attention in its first two years. The couple shares a hilarious and authentic examination of what it's like to be in an inter-enabled relationship. Showcasing together, they're really no different than any other couple. I think they're better than most couples I've met. I'm gonna need a lot of advice because I know you have so much of it to share.
Hannah films and edits the Squirmy and Grubs vlog. She's spoken at many prestigious universities, Fortune 500 companies about the realities of ableism on her very popular Instagram account of which I am one of gazillion followers. She advocates for acceptance of all people works to improve the way that society thinks about disability. And Shane is the author of several award-winning books about disability. He's the president of a nonprofit organization called Laughing at My Nightmare, and a renowned speaker who has performed across the country at places like Harvard University, and the University of Florida, and the University of Connecticut, Princeton, and many, many more. Thank you so much for joining us.
We're so happy to have you. - Just happy to be here. - Yeah, thank you. - We're very excited.
- So, one of the first things we always ask our guests is this question and this goes to both of you. When was the last time that each of you didn't feel enough? - I think the last time I didn't feel enough. I don't know if it's like a specific moment, but sometimes, when I'm on social media, like Instagram, I will feel like I'm not enough because I'm seeing other people doing things that I wanna be doing, or wearing something that I wish I had. So, I don't know if it's like a specific moment, but I will find myself feeling like not enough when I'm comparing myself to somebody else online. - Mm. - And the last time that I think I felt not enough was a few days ago.
We discovered very late at night that we had no clean underwear for the next day. We had to do laundry and I physically cannot do laundry. So, had I had to trudge to the washing machine. - Outside- - It's outside of the Airbnb. - To the washing machine is kind of a weird +thing. - Yeah, and do the laundry and late at night when she was tired and I felt like I should be the one doing that in that moment.
- Hmm. You're listening to the Man Enough podcast. We'll be right back. We'll be right back.
All right, welcome back to the Man Enough podcast. - I was, Hannah, I don't know if you know this but I was with Shane on his first road trip when he left home without his dad who was his primary caretaker for the first time to go to his first speech for Laughing at My Nightmare. What, how many was that, when was that, nine years ago? - That had to be nine years, yeah, and I can't imagine what that looked like. (both laughing) I was such a baby and like getting up on that stage for the first time, having no idea what I was doing. And today, it's just like a normal part of my career with Hannah, but, yeah, back then I was a baby. - You were amazing, and it was so clear even back then that you had so much to offer the world but we're talking about masculinity today.
And I would love to know. I wanna, first of all, I just wanna take this over to Hannah for a second because I would love to know the story 'cause you saw him, you reached out to him. When you reached out to him that first time, was it like, "Oh, wow, I feel something in my soul. This could be my husband," or was it just, "Oh, I just wanna be around him, he seems so funny."
Was it attraction? I'm really curious, and then, I'd love to get into that dynamic. And, Shane, like masculinity, and you as a man, and what that looks like. And I hope we can talk about sex, which I love, I know you love to talk about. And all of this stuff. So, there's so much we wanna get into but I'd love to, Hannah, just from your perspective to hear like, how that all happened and what you felt inside of you when you watched that episode? - Yeah, I think it was, "I wanna be around him."
That was like the general feeling. I thought that he was really funny. I just felt like we would get along. I just could tell and I was right. (both laughing) - Clearly, clearly.
- But I watched the video and I was like, "Oh, my God, this could be a perfect friend." And, I mean, I lived in Minnesota, Shane lived in Pennsylvania. I wasn't watching it and being like maybe I'll marry this guy.
I didn't expect us to like date because we were super far away but I just wanted to be friends. And I honestly didn't even expect more than like one email. I just wanted to be like, "Wow, that was a great video, great blog." But Shane emailed back and we began texting and we FaceTimed the next day and just like never stopped. - I was super swab. In my first email response, I slipped my phone number in at the end.
I was like, "Yeah, yeah," real casual, "Sent me a text." - And I did. - And she did, so, yeah, the rest is history. - Wow. - Oh, wow. When you met for the first time, what was that like? - That was after two months of FaceTiming daily for like four hours a day. So, we knew each other and we were already in love by then.
- That we'd said, "I love you." - Like we had said, "I love you," over FaceTime. So, meeting in person, it was very natural because we already knew each other so well. - It was also terrifying. - Yeah, well, I was a little bit afraid that I was flying across the country alone. What if you didn't pick me up at the airport? There were fears.
- I almost didn't pick you up. - Shane was 45 minutes late to pick me up at the airport, and he's a time planner, so it turns out that it really was traffic but that first day I was like, "Are you irresponsible?" - Yeah, yeah, I remember, so my brother had to help me drive down to Philly to pick her up at the airport because I can't drive. And for anyone listening, I use a wheelchair just in case you're not visualizing me.
And so, Andrew, my brother, is in the hall right there. Hannah gets in, and the Philly airport is wild. So, we barely stopped the car. We just like open the door, we jumped in, and say, "Hey, you," to you.
And there's been all this build-up to this moment. And then, we couldn't really reach each other. Because she was in the front, I was in the back.
We wanted the life empowered, you know, like it's been all this time. - Yeah. - But we didn't. So, we had to wait for the drive home until we had finally hugged and all that. - Yep. - Yeah.
- Why were you terrified, Shane? - Because she's like the most perfect human being that I have ever met, and like we said, there was this emotional and physical tension. And so, I had those like butterflies that you get when you're in Middle School and you have a crush. I had them in such a profound way. My hands were sweating and it didn't really go away, that whole like first weekend that we were together. It was just constant bliss, yeah. - Mm, when I was a kid, I had an uncle, his name is Danny and he had polio.
And his wife, Joyce was like our auntie and their kids were my cousins, Sonny and Piper. I was like five, six, seven, and, of course, at that age, you don't even see any differences or see any challenges. You just see a couple. But then you get older and you start to process, and you recognize some of the challenges that are there. And then you hear the whisperings of other people judgements or confusion.
What is wrong with her? Why would she want to be with him? Why would she want to take on whatever that may look like? And I started hearing this processing and didn't know what to do with it. And then it started infiltrating my own mind. And then, started, I found myself having judgment towards her. And then, it was also, traditionally what I thought a woman might want in a man.
And is this person, my uncle, who I loved, able to provide that for a woman. And all of that would go through my head. And then they, of course, were together forever and ever. He has since passed; he was much older. But I'm curious if you're comfortable, maybe speaking to that a bit.
What is that like for you, Hannah, in terms of why that is not a concern for you? Or is it, and how that feels? And then, also for you, Shane, knowing traditionally what the world says a man is supposed to be and how to show up, and how that might affect you or not? - [Both] Yeah. - I think when we first started dating, I didn't really think about that at all. And no one that I knew said anything that was like, "Why are you with Shane?" Which was lucky, like my family just didn't judge our relationship, and they met Shane and thought he was great. And I didn't really get any of those judgements until we started our YouTube channel which was two years into our relationship. And then, we started getting tons of comments, and it's probably still our biggest comment today, is "what's wrong with her?" And "Why would she do this?" - Mm.
- [Hannah] So, I think it was helpful that we had two years of a relationship before we started getting those judgements because by then it was like, well, whatever, I know this is a great relationship. And if that had hit us earlier on, I might have been more like, "Oh, am I making the wrong choice?" But really I just try to ignore those people, and we know that those ideas come from this idea that disabled people are less than able people, and a disabled man can't provide the right things for a woman. And, personally, I just don't have those beliefs.
I don't think that my husband needs to be like, a protector or whatever, like be able to chase a bear away, whatever. People will literally comment things and be like, "He needs to be able to mow the lawn," and I'm like, "Well, like why-" - Wait, no, really? - Because why can't he just be the one that's doing our taxes? (chuckles) (Liz voice drowns out speaker) So, we just have a different balance in our relationship, and that feels right for us. - Yeah, I was, I mean, the idea of how that affects me, society's attitudes about masculinity, is a huge like life-long topic for me. So, without giving you my entire life history, in High School, as people began dating more seriously, and I kind of had that in my world now, I quickly gathered that I might not be a valuable partner. And that was because in high school, being a boyfriend and a girlfriend meant, having your boyfriend pick you up and drive you to school or skipping school for the day and going to the beach, going to parties.
That were difficult to do, or impossible to do in my wheelchair. And so, suddenly, I felt like I internalized those ableist ideas from our society that I had to be the one picking her up and be able to give a hug, and things like that. And I had no like self confidence, no belief that I would ever be a good partner. As I got older, and went to College and met more people with a wider view of the world, I realized that those attitudes and traditional beliefs didn't apply to everyone. They didn't need to apply. We just kind of pretend that they do.
And that's when I began to open myself up to the possibility of having a partner. I think I said in the video that Justin and Jamey and Soulpancake made that, you know, I wanted someone to share my life with but that I doubted that that was possible. So, yeah, it's tough. There are days when I get really annoyed that I can't help do the dishes but like most days, I know that I am contributing just as much to our life and our relationship as Hannah is, and I can do that, whether or not I can bench a hundred pounds. (chuckles)
- Yeah, yeah. - And I think there's something so interesting about all of that, right. So, when I; so I wrote a book about masculinity, interviewed a lot of different men about the concept of masculinity, and the most interesting displays of masculinity, and the most interesting definitions I've got, were from the men who didn't fit neatly into the sort of prototypical stereotypes or expectations that we have of men in our society. And men with disabilities and physical disabilities, particularly, talked to me about everything that you're saying, right, that there's this idea that you have to be a protector, you have to be a provider. And how are you gonna do either of those things in a society that is ableist, right, where you are limited physically because of environments aren't accessible, or that we have enabled us, were placed where you have an amazing job.
You created this amazing career for yourself but I'm sure it wasn't always clear that that would happen, and there are many people who probably told you, not even to think that you would be able to self-sustain yourself. So, I'm curious, knowing those things, right, that bench-pressing, first of all, also, I've never been better off as a woman because I was a man who could bench-press a certain amount, or do a certain physical task, right. There's so many things that go into being a great partner to a woman that have nothing to do with those things. And maybe if we were more open and more flexible in our definitions of masculinities, maybe more men would be able to take on roles that would, I think, make them happier and make their partners happier. But all that being said, given your life, and all of the ways that you have felt pressured to be a certain way, like what does being a man mean to you? - Mm. - Oof, that's a great question.
Being a man, it's funny, in my everyday life, I don't think of myself as a man, or I don't think of myself as a gender. You know what I mean? I am a man and I identify that way, but it's not something that factors into my everyday life. Like, I'm never, like I should do this because I'm a man.
I'm sure, somewhere inside of me I'm asked beyond those identifiers but to me, I think it's about being honest, working hard. I am driven by success and achievement, and productivity even. I think that my- - Those are excellent qualities. - [Shane] Are they? - Mm-hmm. - Oh, well, see, there you go.
- So the world says. So the world says. - So the world says, yeah. But I think I probably compensate for not being able to take the trash out or mow the lawn.
Things that I feel like I should be helping out with by being as productive as I can, being as successful as I can, so that I can support us and our eventual family. Yeah, I think, yeah. - Mm. - And you do a lot of emotional labor.
I mean, I've seen one of the things I've been so impressed in your interviews is, you really are specific about what you need and you say it, right. I mean, if we wanna get into sex- - Go there, Liz, go there. - We're getting there, we're going in. (chuckles) You say, "I can't initiate sex physically," and so, I will literally say, "Do you wanna have sex?" And I just think, wow, if most couples were able to have conversations like that about sex that were as direct, and clear about what you need, maybe so many of us wouldn't need as much couples therapy as we need you, or end up going to. So, I think that your relationship actually, I mean, is not inspiring in a disability like inspiration porn kind of way, but really a blueprint for how relationships should be.
- Thank you, uh-huh. And so, just being there for your partner to listen to them and talk through things with them, and kind of just like figure out life together. Like Hannah and I make almost all of our decisions together, from what we're having for dinner to what our goals are for five years from now. - Mm. And so, I think that kind of like communication and listening to each other is another part of what I consider being a good man. - Yeah, and the communication, I think the communication in our relationship is made stronger by your disability.
Because, like what you were saying when Shane can't initiate something physically, we talk about it. - Yeah. - And even just like talking about like, (chuckles) I don't wanna get too detailed, but if he's- - No, you can go there, go ahead, come on. - Get intimate, we want every bit. (giggles) - But even just like, Shane's saying, "Can you move my arm to the right," little things like that, that keep us way more connected than we otherwise would be, I think, make our relationships stronger.
Just talking about lots of things that we wouldn't otherwise. - Yeah, in the beginning of our relationship when I was helping Hannah to learn how to like take care of me with me. Like with me, I have my wheelchair, put me in a comfortable position into bed. But then also, like relationship intimacy stuff. Like how we cuddle together? How she can undress me.
I had to do all of that with my voice. I had to explain like, this is how it will be comfortable. This is how it'll be safe. And that resulted in so much like laughter and just like bonding because it was like these intimate moments where I'm like now, to take my boxers off, lift up my hips, and we had fun with it. - Yeah. - I love that, that's my marriage three months in, or not even three months.
Two months into our marriage, I had an injury that Justin and I experienced together where he essentially, ripped my ankle off of my body. - Oh, my God, oh, my God, Jamey. - Let's just go with that narrative because that's not. - We'll talk about this another time- - But now you said that- - So, now you gotta fire through because this happened. - Yeah, no, no, that's a joke.
But we were zip on a zip lining accident and he's Hercules and I'm not. And when we crashed into each other, it's too long of a story to share. But when we crashed into each other. - Jamey forgot to put his legs down and get to the other side of the zip line. And he started going backwards and the guys did, it was so far away, the guys couldn't see and they sent me, so here we are, I'm going 40 miles an hour, like 500-feet over the Costa Rican Forest.
And here's this dummy flying towards me, 'cause he was showing off for his new wife on video, and he forgot to put his feet down and we collided in midair, both of us going probably 30 to 40 miles an hour, and- - And fly. - It was a terrible, terrible crash. - But essentially what, to the point I'm making is that the accident was so bad that I didn't think I'd ever walk again. There was a conversation about amputating my foot, and even if they could do surgery, would I ever walk? - It was terrible. - So, there was that. But when I came home, now my wife and I had just been married maybe, two months.
So, the first six weeks really of our marriage, I was stuck on a couch and couldn't move. So, she had to literally bathe me, and wipe me, and feed me. And even though this was a temporary period of time, it was in that time that our relationship grew the most at. Everything was incredible because of what you spoke to Hannah, like she had to ask me.
I had to ask her, "Can you move my arm here? Can you do this, can you do this?" And I was forced to ask for assistance in a way that I never was comfortable with before. And in that period, so now I had, let's say that six weeks was extended to six years, or the rest of my life, our relationship was still our relationship. It was still beautiful, it was still wonderful. All of these traditional things that I thought meant having a successful relationship, was reframed during that time.
- You're welcome. - (laughs) Okay, I will thank you to the day I die for my wife is everything. (everybody chuckles) And, Hannah, can you speak to, you know, every relationship has its struggles, we know that. My daughter got married recently, and I had to talk to her like, "Hey, here's some things that come with that.
How do you feel about that? You might have a white person marrying into a Black family." Those are real issues that, not issues. Those are real things that might come up that one might have to have the strength, or ability to navigate through. We all have to weigh those things out.
Or I have some friends, women that like, the man doesn't make enough money. And what does that mean? That's a real thing, like how, where am I gonna live? How will we live? Whatever those things are. So, I imagine that tho there are real things that we always have to consider. On the other hand, it's always interesting to hear aside from that stuff, what is it that this person does for my life? And, Hannah, could you tell us what is it that Shane does for you? What is it that just stole your heart? Why is he the man that you love so desperately? - Yeah, I think the biggest struggle that we have in our relationship, like you were talking about, is other people's perception of our relationship. Like, by far, that is what bothers me the most.
- [Jamey] Mm. - So, oftentimes, I will literally think about, I know what our relationship is like. These people who are commenting things online don't know. And I'll remind myself of all the things that Shane does for me.
I know that he is the most emotionally supportive person I've ever met. Like he is the best communicator and the best open with his emotions-person. He's definitely helped me become more open with my emotions, and talk about those things more.
He's just really skilled at that. And so, in our relationship I've, I think grown a lot- - Yeah, yeah. (Hannah giggles) I mean, when Hannah and I met, not to get like too far down the rabbit hole here, she didn't feel comfortable having long conversations about emotions or feelings or things like that. And that's always been big for me.
I think that's why Justin and I fell so hardly in love but- (chuckles) - Madly in love. - Madly in love, madly, truly. So, on these long FaceTimes together where both of us really wanted to be there, we, I made her talk, yeah. (laughs)
- All we could do is talk. We were long distance for two years. So, that was, I mean, aside from a visit every month or so, that was all we had to do. So, there was a lot of talking.
- But I just looking at like Hannah then when we first met, and I am taking zero credit for this, other than that- - I'm giving you credit. - But other than the fact that, I made her talk to me. (chuckles) Listening to her then, and now, speaking like at auditoriums full of thousands of people, and making YouTube videos that get watched by millions of people.
I'm just like, so it's neat to see how comfortable she is now, talking about her emotions. - Yeah, and aside from that, Shane also just is such a hard worker. So, aside from the emotional aspect of our relationship, what he brings to it is also so much hard work in terms of our career because we do also work together. So, working together has been nothing but a good thing because he's such a hard worker, and because we get along so perfectly.
- It's because of my calendar. - Your calendar is very precise but we also just never get sick of each other. Our sense of humor is the same, I think, it's just spending time together is, you know, it's better than being alone, which like for me is rare.
- Hannah told me, I don't know, maybe a year into our relationship that even with her very, very best friends, even with her mom who is her best friend, after being with them for a certain amount of time, Hannah needs to be alone and decompress. As an introvert, she just needs that time to recharge and not have to worry about talking to someone or being with another person. But she told me that as we are spending days and weeks together with no separation, like when we went on our road trip together, and spent literally a month in the same room or car at every moment of the day, she was like, "I am not feeling like I need to go decompress when I'm with you." And that's like, that was brand new for her, and a sign for me that like, "Wow, that like, this is real." - And now, it's been four years of living together nonstop and we (chuckles) still have an even break. - Every once in a while, she'll be like, "(Indistinct) into the bedroom and close the door."
(Jamey laughs) But it's very rare. - Yeah, just my last thought was how much joy it brings me, number one, that you guys have each other. And whenever you see two people in love and navigating life together, how beautiful that is no matter who those two people may be. And also, I love how much you both get to debunk concepts of what relationships really are told to us that they're supposed to be.
You, Shane, are demonstrating to men, and this should not be your responsibility in life. Your responsibility should just be to experience joy and love. But we do know that, with our life, we have opportunities to share and enlighten humanity.
And you get to demonstrate to men that what we think we need to be is not accurate. We can show up in so many different ways. And that, in fact, is being a man.
And, Hannah, also what you get to demonstrate, I think for so many, is what women, or even men, of sex, same sex relationships or whatever, but what you think you need and what someone is supposed to give you is in fact not really it, most of the time. It's so much more, it's really about spiritual and emotional connection. - The debunking thing is really interesting because when you look at contemporary society, social media, TikTok, Bumble, Tinder, all of these things, we tend to always, and I'm gonna generalize here, but what we tend to work from the outside-in. It's, I dream of someone who's six-feet.
I need someone who's six-feet-two, or, "Oh, I'm so drawn to big hands or a big dick," or whatever the thing is, right. Like, I'm just saying, this is what we see. This is what we see every day that men feel like they have to measure up to, this socialization around masculinity and how both, I will say men and women, and genders are deeply affected by this idea, right. And we talk about internal misogyny that a lot of women experience. Obviously, men feel like we have to measure up in all the ways. Shane, I know you've been dealing with this your whole life.
So, in some ways, you've had to build your superhero armor around it and have it not affect you. But what are the struggles around that? You know, are, because there's beautiful men everywhere, Hannah, right, you look at the Jason Momoas of the world and I wonder, is there a part of your brain that's like, "Huh, I wonder what that'd be like?" Or, "Oh, Shane gives me everything." And, Shane, do you ever feel like, I don't know, angry or insecure or, I just, I want to, let's take it a level deeper. And I'd love to talk more about that because here I am, oftentimes, making other men feel insecure, right, by my presence, or having women drawn to me, yet I feel like I don't measure up a lot. And that's what I wrote my whole book about.
It's like, if I'm feeling this way, then everybody must have, and must experience this in some way. So, what is it like for you guys? - Hannah wrote something yesterday on a post that she made that was answering the question, "What attracted her to me?" People often very rudely say to them was like, "How on earth are you attracted to him?" - Oh, that's nice. - Yeah, oh, lovely. It makes me feel wonderful. Her point that she made was that my physical appearance inability and her physical appearance, have nothing to do with our relationship getting stronger and stronger for six years. That's just not part of it.
So, that I just wanted to share that because I thought it was very true. - Yeah. - Talking about like moments in our relationship when we might feel insecure. In daily life, you have days or experiences where everything goes wrong. (Justin chuckles) We all have had this day where we are driving somewhere and our tire blows out and then we're late for dinner reservation.
And then, the food that we order is bad. On days like those, I really, really, really wish that I could get out of the car and fix the tire, or do more physical things to help her. Give her a back massage because I know she's stressed at the end of this day. And I've had to come to terms with the fact that like my, the things that I do contribute which are often not helpful in those very annoying moments.
Like when the tire blows, me saying, "All right, well, I'll schedule the repair for tomorrow," is not helpful, or it doesn't make Hannah feel better. - And how do you get out of that, Shane? How do you, and because I'm asking personally, because again, I have the same things, right. - Uh-huh. - They're just different. And if every man or woman listening to this were honest with themselves, they would have the same things. So, I'm curious, when you're in that place, when the tire breaks down, when the tire blows, the car breaks down +on the side of the road, you can't physically help in the way that you wish you could. - Mm-hmm.
And for that moment, you're like, "Wow, my, the ways that I support and my wife are not useful right now." what, how do you get out of it? What's your step-by-step process? (Shane chuckles) - I should analyze myself more, next time this happens. I think I've handled it badly in the past. Like I remember bad days where, or bad moments, I should say, where I'm feeling really bad about this.
And in that bad moment, I bring that up to Hannah. And I tell her about how frustrated I am that I can't do something. And I think that is not conducive to those moments, which is fine. - Mm.
- But those moments aren't about me. For me, if that makes sense, I am trying to make Hannah feel better. And so, throw in that, I feel horrible as well just doesn't- - That makes her kind of feel like she has to take care of you on top of her feeling +bad.
- Exactly, exactly, and when I do express those things, she's never like angry about that but it doesn't help the situation for either of us. So, I think today, the way I handle it is to let the moment happen and play out and acknowledge that like, yeah, there are gonna be these random, difficult moments in everyday life, and that's okay, and I don't need to fix it immediately. Ha, do you remember, like, you wanna talk about that? Just in general, like my fixing yeah. We had this conversation. - Yeah, we did. And not even just in the context of like Shane being upset about something, but when I would have an issue, even when I was in College, and I'd be on FaceTime with Shane, and I'd be like, "I did badly on this paper."
Shane's instinct would be to fix it. So, he would be like, "Well for the next paper, I can proofread that." - So, Shane is trapped in some masculinity as well, okay. You're not perfect. (laughs) - He's trying to fix this and it would annoy me like a couple of times it would annoy me.
And then, eventually, I was just like, "Can you just listen and stop throwing out suggestions. I don't wanna hear your suggestions right now. I just wanna tell you that I'm annoyed about something."
And he was like, "What?" (chuckles) Like this mind blowing moment. And then, since then he has realized that like when I'm venting about something, most of the time, I really, I don't need like suggestions for fixes. - Yeah, and it's also her venting about something that went wrong. Isn't- - Doesn't mean I'm mad at you.
- Yeah, it doesn't mean she's mad at me. For a while, I took every annoyance that Hannah faced and I internalized it. This is my fault somehow, because I can't do the things that would've prevented it or that would've resolved it immediately. - Yeah. - But it's not. I get annoyed about things that have nothing to do with Hannah.
And so, I wasn't giving her that Reddit, or I don't even know what the right word is. I wasn't allowing her to feel emotions separate from me. I had made it all about like, "Oh, that must be my fault." So, this is all to say, we've had this conversation before. This is that one and I've recognized this.
So, now I try to just listen, allow for that negative emotion, and then cheer up in a bit, right. And not with solutions, never solutions. (Hannah laughs) (Shane chuckles) - Well, I was just gonna say, I had one thought. I just wrote down as you guys were talking that I had never thought about before. And this is why I love this podcast and love talking to friends like you is, I think we spend most of our lives thinking that we need a certain thing. Like why do we need to be physically strong? Why, as men, do we need to be physically strong? Why do we need to have broad shoulders? Or, whatever it is, you'd be able to run or chase something or, why do we need those things? And it feels like we spend the majority of our lives thinking we need something when in reality, we only need those things five or 10% of the time.
That's kind of my thought talking to you guys is, yeah, Shane, you might, it might be great to be able to fix a tire, but how often does the tire blow? - Yeah. - Right, it might be great. It might be great to be able to scoop up your wife and carry her into the bedroom, or to take her, but how often do you really need to do that? Because 98% of the time, 99% of the time, we don't need any of those attributes. 99% of the time, what I believe we need is what you're talking about, which is emotional intimacy, which is communication, which is listening to each other and sharing feelings, that's 99% of the time. I'm not gonna not say that we don't need those things.
That's not nice to have those things. That it isn't great to be able to fix at tire. But if you really strap, bring it down to the bras tax of it all. It's not our whole lives. It's a tiny part of it. - Mm-hmm, and I would add to that, that for all of those things that make up the 1% of time, all those attributes that society says I should have, many of them I can work around and do in other ways.
So, with the higher example, I can call AAA. Hannah hates making fellow calls. So, I can get the one on the phone, call AAA, right there, even for the things that society says, "You must be able to do this as a man," there are ways to accomplish them. Like allocations that I've found to still be able to do them in some form or another. So, I just say that percentage get even smaller.
The number of times that my physical ability factors into something that we're doing. (chuckles) - Mm-hmm. - Mm. - Mm. - Yeah, but we know, just from research that transgressing these ideals of masculinity, it doesn't just bring men emotional shame, and what you're you're talking about, which is like sort of the psychological struggle of that.
That man who, for example, make less money than their wives, have more cardiovascular issues. They are more likely to develop diabetes. They're more likely to have physical ailments, right. Just from, and again, researchers have made sure it's not other things that are really coming out to play that they really controlled for other variables. Still, they really assign the fact that men who make less than their wives, that they're less healthy to the idea that there's something really, really difficult in our society about feeling like you're not living up to an ideal, that's been set.
And again, just like you're talking, Shane, you make it about you, right. You say, "Well, I can't do this one thing, so there must be something wrong with me," right, "There must be something broken about me." And I just think how much pain we could avoid by letting people really be freely who they are. And to be more free in their relationships, whether they're disabled or not.
You're actually representing something that, the reason why you get so many of these comments is because we're not used to unfortunately, seeing couples like you, even though they 100% existed or 100% out there. Even when we think about representation that's been positive for people with disabilities, like love on the spectrum. Well, not to say that's positive, I think it's a net positive in a sense that we're seeing people going on dates who are on the autism spectrum and finding love but the criticism from many people within the disability community and particularly the autistic community, is that, why is it just autistic people dating each other, right.
Why not show that actually, there's a whole range of people that people who are on the spectrum are dating. And curious when it comes to representation. How can we, like, what would you like to see when you turn on your TV? When you go to see a movie, what would be meaningful in terms of the way that we represent love, and people with disabilities who are in love? - Yeah, that's a good question.
I think so many of the issues that we face as a couple that I face as a disabled man that millions of disabled people face all over the world are a direct result of media representation. So much of our ideas and beliefs about the world, which then dictate our actions are formed by what we watch. And it's been really healthy for me to realize that.
And so, like connect the kind of mistreatment, and prejudice, and ableist ideas that I've faced my own life to this larger than me idea that like, well, every movie shows you like you have to be a strong athletic man, if you're a guy. And it's not just the natural way of things. It's just what messages we've been given. So, that was the big reason that we made our YouTube channel and do it to this day. It's a big reason why we're sharing so much of our life.
It's because people needed more examples of what disability looks like rather than the handful of examples that we do see in the media. - And I think it's funny because some people see our channel and it is a positive representation for them and they feel more free in their relationship or looking for a partner to be outside of the norms of masculinity, or femininity, or whatever, but then other people see it and it is such a threat to them. It's usually men. See it, and just me being my husband is like, so beyond their imagination. - Their fragile masculinity. - Yeah.
I've worked my entire life to have muscles and I know how to change a tire and I still +don't have a girlfriend. And the fact that Shane does, means that there's something wrong with me. Like that's not, that shouldn't be possible in their minds instead of being like, huh, maybe emotional intelligence is important. - But that's fascinating that you're a threat to their ideal, right, That like, they're like, "No, no, no, the rule is, if I'm strong, if I can mow the lawn, then I get, "Oh, I get a woman, this transaction," right. And you are directly threatening that which is so fascinating. - But that's what the world has told us.
That's why we're doing this show. That's why I also have compassion for that man, Hannah, because the world has told him. The world has told me that if I do this, this and this, then I will have a wife like you.
And Shane breaks all of those rules. So, in his mind, he's done everything he's supposed to do, and he's a victim. This is the problem. This is the issue.
This is the misconception. This is the struggle because it's all the lie, none of it's real. - [Liz] And no one is owed to you right to, It's entitlement, right.
- You go to the emotional gym, you go to the spiritual gym. And that's what makes us, if anything, not just better men, but humans, which is why, Shane, when you said, like, "I don't really think about my gender during the day." That's how honestly, it should be.
We're supposed to. I don't honestly believe we're not supposed to be thinking about walking around thinking about our gender, right. And by faith we're told that the soul has no sex. We're, like we're all souls connecting. And what you guys are demonstrating is a deep soul connection. And if you strip away all the noise, that's all that matters.
- Yeah. - I love that so much, man. I love what I, I just, I just admire and love your relationship. Go ahead, Jamey. - I also have some thoughts.
This is interesting how my brain is working. So, we don't wanna make distinctions between so much. We wanna make sure that there's equality in all things, and everyone's represented equally and fairly in all of this. Having someone, this is mental disabilities, not physical ones, but having a brother who's Downs, he has experiences and will always have experiences that are different than someone else. And we can't pretend that he doesn't, right, because otherwise you don't learn, and you don't have the same, all the stuff that comes with that compassion.
So, then with physical disabilities, I'd love to know, Shane, how that works for you? Because, of course, there, you don't want anyone to say, "I don't see you. I don't see you see me for who I am and for the challenges in my experience in life." And that experience as a man is different than mine and different than Justin's. How would you like the world typically to approach that? - Yeah, again, these are big questions.
So, shrinking it down, I'll try to be concise. I think that what you're talking about is my own pride in my identity as a disabled man. And that has changed a lot in my lifetime. Earlier in life, I hated the fact that I was disabled.
And if someone came up to me and said, "I don't even see your wheelchair, I just see you, Shane." I loved that, I thought that was a great thing. I didn't want to be connected to my wheelchair. I didn't wanna be connected to the disability community.
I didn't wanna be disabled. And that was because of society and our world, and I was learning and internalized the fact that the world is not accessible and that the world has all this stigma about disability. They believe that you should cure your disability and not have it. As I get older and met more and more adults living with disability who had careers, and families, and marriages, and just these great lives. That to me was never what I thought disability was about.
I thought it was about having a bad life, and being alone, and not being hurt, if anything. All these older adults made me begin to think, "Okay, why am I, so why am I thinking about my future? So beneath me, and why do I feel like I don't have worth as a partner?" And it just because of all that societal stuff that told me that. So, in my mid to late 20s, and even today, I am getting better about loving in my disabled-self.
And so many, like thousands of disabled people that I've met have already gotten there. And they want you to see their disability and acknowledge it, and realize that it's not a bad thing because today, I believe that I am not inherently wrong or broken in any way. And then, like getting to that point has taken me 29 years, and a lot of struggle along the way.
And I did register that we need to all come to the agreement that disability is not a bad thing but that the way that we think about disability, and the ways that we organize our world and our society, makes it really hard to be disabled. But that's the fault of society and our world, not disabled people themselves. I think that, if that makes sense. - Thank you, thank you, it's really, really sweet. Really good to hear.
- And how was that for you, Hannah? - Less annoying. - No, because they think so much of this is right. Like women are part of this too, that I think that we somehow feel less feminine or feel, again, that there's something wrong with us if we're doing something that is quote unquote masculine, or if our partner, right. So, I'm just curious if that made you think about your role and yourself, and was there any rethinking about it, and how did that sort of set you free to also just be fully yourself? - Yeah, I'm trying to think back to like six years ago when we met, because growing up, I'm tall. So, I'm 5-10, and I always had the idea that my partner would have to be taller than me. So, at least like 6-1, 6-2, that would make me feminine, all of these things.
- Wow. - She is a swimmer. Everything is Michael Phelps. - Yeah, so, yeah, that was a good height. (chuckles)
So, yeah, I had all those ideas and I think just like when I met Shane, we got along so perfectly. And honestly, we've said this before, but it felt like there wasn't a choice. Like we were just like, "Oh, this is our person we're done."
It doesn't really matter what we look like. So, I think just being with him, I think less and less, and now I don't think about it at all. I'm just trying to think back to like years ago, I just began thinking less and less about my presentation, like how I was appearing feminine and what do I look like right now? And am I looking like too large next to Shane? Like all of these things have just like gone away by being in a relationship with him because I'm like, well, it doesn't really matter anymore. I don't care, you know? So, I think that's been like a- - Yeah, do you wanna talk at all about my burden complex? 'Cause that was, I mean- - True, you coming, yeah. When I first met Shane, he had what he calls a burden complex and he's still, it's still a thing, but it was like raging when we met and it was basically- - It was basically just he felt guilty asking for help.
He felt like he was being annoying, that he was being ruining my day. And so, if I would sit down on the couch, he would be like, "Oh, I'm not gonna ask for anything because then she has to get up." And if he did have to ask for something, he would apologize. And so, for the first two years, every time Shane would be like, "Sorry," I would be like, Stop apologizing, it's fine.
I really don't mind grabbing your glasses for you," or whatever it is. And then over the next four years after that, I think, Shane, like we had a lot of conversations about it in depth, and specifically, and he has become way less in- - Apologetic. - Apologetic, yeah. - I think that our relationship got healthier as I felt less and less like a burden. And I do 100% credit Hannah with giving that to me. I feel significantly healthier and more positive in my everyday life. Not feeling like I'm walking on eggshells every time I have to ask for help.
So, I just think it's interesting that Hannah wasn't into her part of that change for me. - Hanna, have you ever been in any similar situation before Shane, have you ever taken care of anybody, or wiped someone's ass, or? - No. - She, I mean- - What joke are you gonna do, Shane? Go ahead, go for it. You're so excited, what's your joke? - Her main interest is the ass-wiping. So, that was the demand thing she was listening for.
- Yeah, no, no, I had never. I didn't even know anybody that used a wheelchair. I just, I had no idea. If you had asked me "What is ableism?? I probably would've been like, I don't know, not something about disability." I had no involvement in the disability community. I didn't know anybody that was disabled.
I had never been like a caregiver. In fact, I'm like (chuckles) talking about how I improved my like emotional side, I was never really like a touchy feely person. And so, my parents still joke about the fact like I am Shane's caregiver and I like help him. And they're like, "You're the last person that we would've guessed would be good at that." They always joked about when they're older, they're gonna go to my brother's house and not mine because he's an emotional person.
- Nurturing. - Nurturing, yeah. And so, I just like never was like a caregiver type- - You were never like, "Oh, I'm gonna be a mommy someday" - Yeah, that was never really my goal to be like nurturing." I wasn't like a great babysitter, and I just didn't have that. - God, that just made me tear up, you saying that. Because I, I guess, again, I'm just gonna, I'll just direct and be super real with my own unconscious bias.
I think there was even a part of me that wondered if that was, if you were just innately that type of person. - Yeah. - And like if, and just the assumption that like, "Oh, she loves that, she's drawn to being, she's super," you know, everybody's born with their own things and we're results of our own traumas. And I think there was a part of me that just judged or assumed that maybe you were just naturally this amazing, nurturing caretaker, and hearing that just like- - Hearing that cracked my heart wide open and I got teary eyed because it's like, wow. I hate love, like, talk about a powerful force that can change us. That can like get rid of prejudices and biases.
You are just a testimony to the power of love right now. Like I'm just blown away and I love that she sucked at it, Shane. 'Cause I can only imagine. I can only imagine how funny that must have been. You're like, "What are you doing? No!" (laughs) - I appreciate you sharing that, both of you. And, Shane, you being vulnerable enough to share that.
That was a struggle to ask, and then to feel like you were burdening her. I mean, when I'm referenced my wife taking care of me for six weeks, that after two weeks, I did, I mean, and I'm sorry to compare myself, but just in my own experience for that moment, I felt I couldn't ask her for a period of time anymore because I felt, and also to be fair and honest, it was a lift for her. It wasn't just like nothing. - Mm-hmm. And I could see that it was a lift like, "Oh, hey, honey, can you go get me a glass of water?" And she would do it with love. But I remember one time I caught her have a little bit of a gasp because she had been up six, seven times.
And it was in that moment, I thought, "Oh, I'm being a burden." And then I stopped, but she addressed it. We had a conversation about it and she made me feel safe for feeling it.
She acknowledged "Baby, that look, obviously, it's not just a cake-walk. I'm not gonna pretend it's a cake-walk, but I love you, and this is what we do." And let me tell you all the things you do for me in different ways that you probably exhale for. And that helped, so I'm sure, Hannah, that there must have been conversations where you acknowledged that it's a lift.
In all relationships doing whatever, it can be a lift. That doesn't mean that we don't do it. And with love and joy for the other, the other partner, whatever that may be.
And I love that you say that, or at least acknowledge that. - Yeah, and I think, now that our caregiving routine is so ingrained in our life, it doesn't feel as much as a lift, because it's just so routine when we're like getting up in the morning and getting ready together. I'm not thinking about like, "oh, I'm helping Shane right now." It's just our daily routine and we're talking, and getting ready for the day. But there are definitely moments where I don't really feel like getting up. And that happens with everything.
Whether it's, I need to walk the dog or Shane wants a glass of water, or I need to do laundry, or we have to post a video. There's tons of things that you might be like, "Oh, my God, I don't really feel like doing this right now." But Shane's caregiving is definitely not like a massive burden that you would like, people think it is, you know. - I'm sure for him too, yeah He doesn't wanna have to be emotionally supportive for you on days. (laughs)
- Exactly, mother talk. - And there's, I mean, there's been moments here and there where, yeah, like that thing that you said, Jamey, about, you notice the sigh and that just like kills you inside. Like we've had those moments, like that's human and I, but I think there's a difference between like how I handle it. So, we've had moments where I do notice a sigh. Maybe it's been a really long day and I decide that now it was a great time to ask for my third beer, or something like that. (Justin laughs) Like right after she's laid down.
I have a choice about how I handle that sigh and whether or not I choose to like view it as a negative about me. - Mm-hmm. In the past, I've been guilty of, you know, if she does sigh, saying, "Oh, nevermind, nevermind, nevermind." like you got mad. Almost like getting like mad at her about it.
Like for expressing emoti