All About Change - Shane Burcaw - Proud to be Disabled

Episode Date: May 13, 2024

Shane Burcaw grew up in Bethlehem, Pennsylvania, and graduated from Moravian College with an English degree. His bestselling memoir was shortlisted for the ALA Excellence in Nonfiction Award. He also writes as a freelancer for The Morning Call. His blog, Laughing At My Nightmare, talks about the humor of living with Spinal Muscular Atrophy (SMA) and has over half a million followers. Along with his wife, Hannah, the duo started their popular YouTube channel, Squirmy and Grubs, in 2018.  Shane sat down with host Jay Ruderman to talk about his experience growing up as a person with a disability, his advocacy work through his YouTube channel and non-profit, and how he challenges people’s assumptions about what someone living with a disability can do.See omnystudio.com/listener for privacy information.

If I'm going to die by 30, then I'm going to live the crap out of life until then to make a person. And that idea ultimately carried through the rest of my life. Hi, I'm Jay Ruderman and welcome to All About Change, a podcast showcasing individuals who leverage the hardships that have been thrown at them to better other people's lives. I say put mental health first because if you don't... This generation of Americans has already had enough. I stand before you not as an expert but as a concerned citizen.

Shane Burkett never set out to have a massive following. When he started making content about living with Spinal Muscular Atrophy, known as SMA, he rapidly gained online attention. As my blog was getting bigger, I began to meet more and more much older disabled people, both living with my condition and others. And I began to learn from them that a life with a disability need not be a negative or shameful experience. He's since written multiple books, founded a landmark non-profit,

and built a YouTube channel with more than one and a half million followers. It's a double edged sword, not to use a cliche, but it's really effective in showing people the reality of disability. On the other hand, yeah, it's a very vulnerable thing to let people into that part of your life and it opens the door for people to make horrible comments and say why do you look so weird in your bed and how has a woman like that ever wanted to take care of a man like him? I sat down with Shane to talk about what his journey looked like, to get to where he is now. I was diagnosed at 11 months old, so my whole life I've been disabled and that's just been the reality of my existence. When my parents found out about my diagnosis, found out that I would be a wheelchair user for my entire life, that I would need significant physical

assistance throughout my life. They obviously were not expecting that but they made a decision in that moment that disability would not you know have a negative impact on my life. They acknowledged yeah like life is gonna be different than we imagined. But we were gonna work together and figure out ways to have me live a as regular of a life as possible using adaptations and advocating for myself. I got my first electric wheelchair at the age of two so that's like an instant basically. Being handed this 300 pound piece of machinery sounds like a horrible idea but as I was learning kind of how to navigate this newfound freedom I had, you know, at my

fingertips I could now get myself anywhere I wanted to be. But as I was growing up as a child, they really encouraged me to go out in the neighborhood like all the other non-disabled kids and play and make friends and get dirty and, you know, get in trouble, although they didn't love that. But they kind of gave me that freedom to figure out for myself how to navigate the world in a wheelchair rather than something that I see all too often, which is a complete opposite of that where a parent of a disabled child feels that they need to overly protect, overly monitor kind of, you know, the classic tele-hopter parent that you hear about. And I think that that ultimately is a disservice to a child because they feel, you know, so

separate and differentiated from the kids around them. My parents were really good at allowing me to go out and explore the world, make friends, make mistakes and learn from them. As I got older, they shifted that into helping me advocate for myself, you know, when I was going to school and I needed maybe a newer or a different accommodation. It would make sense for my parents to hop on the phone and call the administration and say, hey, Shane needs more time on tests because his arms are getting tired, but instead they encouraged me to get on the phone and call and say hey this is what I'm dealing with and here's why I need to change my accommodation. So they instilled in me ideas of responsibility and self-awareness, communication skills to

be able to explain to the people around me like, hey, this is my disability, this is why I use a wheelchair, and here's why you can interact with me just like you do anyone else. A phrase prominent in Shane's work, his blog, his nonprofit, is laughing at my nightmare. That came from learning that humor was a way to disarm people's discomfort with my disability. At a very early age, I began to perceive that other kids and the people around me made assumptions about me based solely on the way that I looked, the fact that I used a wheelchair, and I had to overcome those initial assumptions and judgments by people every day, it seemed. And I found that by making a joke, by having open communication, I had to get people, you know, over their own pre-sensitive

notions about disability a lot faster. That humor isn't just for other people's benefit. Shane told me that laughter is a vital part of his own mental health, something else he attributes to his parents. When you're living with a disability, even when you don't live with a disability, life is inevitably difficult, you know? We all face daily and year-long, lifelong challenges, and humor does not solve any of them. I think that's like the most important headline is like laughing about a problem that you're experiencing isn't gonna fix the problem and that's not the point of it I don't think but rather to help you and maybe those around you be in a better headspace to deal with whatever problem you're experiencing in

more practical ways. I believe that this mindset of mine came from our family dinner table early up, like my mom and my dad and my brother. We would, relentlessly, make fun of each other each night at dinner, and you know, we would make fun of the problems we were experiencing all in the loving, you know, lighthearted way, but it it taught me and my brother that it was okay to laugh about the more vulnerable parts of life, and you know, like nothing was off limits at the family dinner table, so if you didn't laugh about it, you're the hobgoblin now. And I do think that, you know, if you're able to step back from a problem that you're facing and laugh about it with a friend, you can move forward in a more productive way. But even with all the love, laughter, and support, Shane said there were

still difficult times growing up. So my disease is progressive meaning that I get richer as I get older. And I've always known that, but it wasn't until eighth grade when I really like looked that in the eye and realized what it means. I was having trouble chewing my food in eighth grade, which is something that I've never experienced before. And so I did some doodling of my disability, and it was really the first time I read scientific descriptions of my disability. And they said that people with my condition generally did not make it to 30 years old. I entered into kind of this, I'll call it like a dark stage of my life. I don't want to give the idea that I was depressed or anything like

that, but there was always this voice in this idea in the back of my mind that I was going to live a short life and that things were always going to be getting worse and that having a disability was awful and I began to resent my disability and really hate it and I did everything in my power to minimize and distance myself from my disability because it was such a negative thing in my head. And there was just a lot of self-hatred, almost. It wasn't properly expressed, it came out in sarcasm and judgements of other disabled people. it was just a messy mental time for me. And then I got a little bit older, I was always in college and as my blog was getting bigger I began to meet more and more much older disabled people, both living with my condition and others, and I began to learn from them

that a life with a disability need not be a negative or shameful experience, but rather, there are hundreds of thousands of disabled people out here in the world living amazing, successful, happy, adventurous lives who embraced and loved their disability. And this was like a brand new idea for me that you can be like happy and proud to be disabled. In those years ahead that I began to examine, a lot of my own, you know, stigmas and misperceptions about disability, questioning them, identifying all of the ableism that I had internalized throughout the years. Today, you know, I'm 31 years old and I love my life living with a disability. I wouldn't have it any other way. Shane's done a lot of work to rid himself of those internalized stigmas against disability, but old misconceptions still stick around. I asked him what some of the

more common ones about SMA are. I think they're similar to the misconceptions that people have about disability in general. And they are that living a disabled life is inherently negative and sad, less worthy, less valuable than a non-disabled life. And that unfortunately leads to a variety of systemic barriers that we have as institutions in our world today, which helps for so long, we have excluded and minimized the value of disabled people. For many people with disabilities, one of those systematic barriers can keep them from something absolutely vital, medical care. Shane said he was one of the lucky ones.

I was fortunate to drop in an area where I had access to all the medical care that I needed. You know, all the best hospitals were right there in Philadelphia, all the doctors and you can see I had case workers that made sure I always had the equipment I need and fought with insurance when they denied the equipment I need. With that being said, I think I'm an outlier in that way. I'm very fortunate and privileged to have heard of that way because, you know, as I got older and met more and more disabled people, I found that that's often not the case. Another important part of Shane's activism is highlighting the normalcy of his life.

One example, his love life. Hannah was going to college at Carleton in Minnesota, and I had just graduated from college in Pennsylvania. And my first book had just come out, my nonprofit was beginning to grow and help more and more people. And Rainn Wilson, the actor who plays Dwight on The Office had a production company at the time that was making documentaries about disabled people doing interesting things. And they featured me in one of their episodes, and that episode got pretty big on YouTube. It got like a couple million views. And one night while Hannah was studying, she, you know, opened up YouTube to distract herself, found this video about me, and felt like we had very similar senses of humor, similar hobbies and passions. And she sent me an email out of the blue just saying hi like I saw

your video and we have a lot in common like what's up you know I read her email and was instantly captivated by her voice and her you know interest and her worldview I replied, and I was like, hey, let's talk and be friends. So we began to text and then we began to FaceTime. And very quickly, like within a few weeks, we were like, oh no, we have feelings for one another. And that's super intermediate, because we're a thousand miles apart. Thankfully a few months later Hannah flew out to Pennsylvania so that we could meet in person. That kicked off two years of long-distance dating where thankfully we had many kind of visits in between to keep us sane.

At the end of two years Hannah was going into her senior year of college and I was, you know, established as a writer and I made the move out to Minnesota to live in an apartment together and that kind of began our life. Today we're married and we live in LA. Wow. And so you guys have written a book together called Strangers Assume My Girlfriend Is My Nurse. What are some of the misconceptions that you and Hannah deal with on a daily basis about your relationship? There's two main types of misconceptions, and they're the ones that we get online from people that watch our videos, and then ones that we face out in the real world. The real world ones are often not as severe.

They're usually kind of silly, like when people out in public say to Hannah, oh, is this your son? Because they treat me and they can't fathom that you know a non-disabled woman like Hannah would date a disabled man like me. But then like online it goes a lot further because people are able to hide behind anonymity. They double down on the idea that like I should never be married to a woman like Hannah, because it's not something that people often experience. Our media has done a pretty bad job so far of portraying disability in a positive and enviable way. You never see the disabled character be the hero or be the one that falls in love and wins the girl or anything like that. So we have all these ideas in our

society, you know, that disability is bad, it's ugly, it's something that should be avoided at all costs. And people just say that out loud on the internet to us. They say that we're lying, that I'm paying Hannah to pretend to be my wife, as obviously it's never be real love. People say that I am ruining Hannah's life, that by being with, I'm holding her back and she'll never be able to live a full life. It's all wrong and it's all based in inexperience and even though willing, like, a meaningful or purposeful ignorance and the unwillingness to open up a worldview that maybe you haven't considered before. So yeah, it's a lot.

There are a lot of misconceptions about disability and dating and romance and all of that. We've been doing this together now for six years, making videos that is, and we've gotten good at separating kind of our advocacy and our online work from our life. In the beginning, we had the camera on almost all the time. We were filming as much as we could because it was reaching people and we wanted to share our lives and combat those negative ideas that are out there. As we've gotten older, as our channel has kind of matured and come into its own, we've realized that we don't need to share every minute of our life in order to affect the same change. So we're a lot more mindful and purposeful now about having a private life outside of our home.

Alright next Shane puts on his shoes in bed just because it's easier, I find it easier to put them on here than I do in his chair. My toes bend as Hannah puts them in. Just his big toe, I have to repeatedly push it straight so it doesn't snag. Or so it doesn't snap off Snap off Like a thin little tree branch Uh huh

Alright, shoes are on We're flying through this I know, ready for our day Next I prepare Shane's chair for him It's a double edged sword, not to use it on Shane, but it's really effective in showing people the reality of disability. You know, if we and others don't make that type of content, then millions of people don't have experience with what a morning routine for a disabled person who is married might look like.

And if you don't have experience with it, you're left to believe whatever the media is telling you, and again, all those stories are often very negative. In that way, it's super effective to show people that, and that's why we do it. On the other hand, yeah, it's a very vulnerable thing to let people into that part of your life. And it opens the door for people to make horrible comments and say, why do you look so weird in your bed? And how has a woman like that ever want to take care of a man like him? So it's tough on the other hand, but I do think it's ultimately worth it. But Shane's activism and advocacy for the disability community go beyond shining a light

on his personal life. SMMLY is a program sponsored by Genentech, who is the pharmaceutical company that makes the drug that I am on for SMA. And basically the purpose of SMMLY is to give a platform to people with SMA and their loved ones to show the world kind of what we're capable of and what living a life with SMA is really like. And so every year, we being a group of advocates with SMA get together and we dream big about like what what could we do to show the world a different perspective of SMA. We've made a song with an awesome performer named James Deane who has SMA.

We did a fashion show during New York Fashion Week. I never thought I would be a model during New York Fashion Week, but here we are. And then just recently we did a comedic musical, a musical comedy, oh most likely not too. And Hannah and I had the opportunity to help write that musical. We did have a small cameo role, I will not say to be snared in it. There were other much better actors that snared than us. It's a great program. It allows us to dream big about ways to show the world

what having us in it is really like. So I also want to talk about, you've written a lot of books, but a children's book that you wrote called Not So Different, which talks about a person living with disability. I think the book is great because kids have a lot of questions about the world. How do you talk to kids about the issue of disability? What do you wish that kids knew about disability when they're growing up? Yeah, so I've done hundreds of presentations

to schools all around the country. And what I've learned is that, as you said, kids are so curious and innocent when it comes to disability. Like, they just wanna know how I get in bed or what my favorite video game is. But often, out in the real world, that curiosity is met with discipline. You know, if they ask a disabled person out in public, like, why do you look the way that you do? Which is something I get all the time. Often the parents will say, no, no, no, like, don't do that. And then they, they shift them away. And now the kid

has this feeling like, oh, disability is taboo. And it's something I shouldn't talk about. That is not a helpful way to have a kid learn about disability. And so I think it's important to embrace their curiosity, realize that it's not intended to be harmful or mean or anything like that, they just want to learn and so I meet them head-on wherever they are and I try to explain whatever they're curious about in a fun way and then making it relatable. Like they are also kids that love sports and video games and climbing trees and I can relate to all that. Well, maybe not climbing trees but... One of my favorite things is like when a kid asks like,

who's your favorite football team? And I say, oh the Phil and I from the Eagles. And they all go, oh my God, I love the Eagles too. You know, they never realized that like, oh, we can connect. And like we have them as a common. What's your advice on, on how parents and teachers should be talking to kids about people with disabilities? Yeah, I think it's important to frame disability, not as a negative thing, not

as what disabled people can't do. So, you know, if you're explaining why someone using the wheelchair rather than saying that's because they can't walk, maybe you say, Oh, that wheelchair helps them move around. Always be mindful to frame disability and accessibility devices as positive things. You know, we all live different lives and we're all different in a variety of ways, and that's not a bad thing, it's just a thing. And I think that the sooner kids realize that being different

in a physical sense isn't a bad thing, the better. Much of Shane's advocacy work is made possible through his nonprofit, Laughing at My Nightmare. Yeah, so I co-founded Laughing at My Nightmare when I was a sophomore in college. Right around the time that my blog was getting pretty big and I had an audience suddenly and I wanted to, you know, use that audience for good. In the beginning, we focused solely on providing adaptive and medical equipment to people with disabilities and that again came

from my own experiences of like always having everything I needed but being very aware that I was very privileged in that way. So to date, that was 12 years ago, we've given over a million dollars in adaptive and medical equipment, everything from accessible vehicles to communication devices, everything in between. And another new program that we're doing is providing scholarships to people with disabilities seeking higher education. This is our first year doing that, and we are about to announce our first awardees. It's a big time and moment for us. They're laughing at my nightmare.

But, you know, in everything that we do, it's just important to me to make the world a more equitable place for people with disabilities and to, you know, help even that playing field. In ways that are really important, like people should not have to go without the devices that allow them to be comfortable and happy and productive. Like we provided an adaptive tricycle in our last round to a little boy who wanted to be out with his brother and friends riding around but couldn't do it on the regular bikes and his

family didn't have the funds to afford a much more expensive adaptive bike. And so, you know, we provided that and seeing the videos of him playing with his friends was, you know, awesome. It's amazing. Those adaptive devices are so expensive and until they can change that, we're going to need organizations like ours and yours to help make the world more equitable for people with disabilities. So how do people get involved? Let's say people want to contribute. Where should they go to find the organization?

You can go to laughingatmynightmare.com. Obviously your donations are much appreciated and they go directly to providing all of the appointments that I said. We only have one full-time employee, so our overhead is extremely low. But we also have an annual 5k that is virtual so you can do it from wherever you live and you don't even have to run the whole 5k if you don't want to. You can come up for that online now at our website. But yeah, we'd love to also have you apply if you're a person living with a disability and there are items that you need that will help you live a more comfortable

or productive or healthy life, please like apply. We have application windows open all throughout the year at various times. So I would encourage you to apply if that is relevant to you. In light of Mental Health Awareness Month, I want to get a bit more insight into what Shane does to take care of himself in the face of the uphill battle for education. It gets me out on Sundays, like when I read the tenth comment that day telling me that you know I shouldn't be alive. comment that day telling me that you know I shouldn't be alive it's tough at times but I also use it as motivation like each of those horrible comments is a person out there in the world who ultimately can change their mind and like update their view on disability we've had a handful of messages over the years

that we've been doing this from people who left nasty horrible comments saying hey like I used to have some pretty awful views on disability and I was mean to you guys but the more I watched your videos the more I began to question why I felt that way and why I had those assumptions and now I regret feeling that way and thinking that way and I realize that disability and living with a disability is not living with a disability is not the idea that I had in my mind. For an internet troll, if you will, to reach out voluntarily and say, hey, I'd take back what I said, like, thank you, that is unheard of. And those are the moments that keep me going when I'm feeling overwhelmed by all the negativity. It's like people can change and they can improve their mindset so if we can reach them we should.

Ultimately, much of Shane's life philosophy boils down to something pretty simple. I believe that we have one life to live and that making the most of it is important because I don't want to tell them to the end of my time here and be like, oh, I wasted that. Now it's over. Facing your own mortality is ultimately what helped me develop this mindset and that's not something that everyone gets to experience. Highly recommend it if you've never looked through a mortality in the eye. But I had to do that when I was in H-3 and in the years that followed, you know, and I learned what was then like the diet or the prognosis for my disease.

And it helped me just realize like, hey, you know, if I'm going to die by 30, then I'm going to live the crap out of life until then to make it worth it. And that idea ultimately carried through the rest of my life. Yeah. That's a great message. Is there anything you're working toward now? Any, any goals that you have that you can talk about over the next, you know, coming months and years? Yeah. So with our nonprofit, Laughing at My Nightmare, we're always trying to, you

know, raise more money so we can help more people. You know, this year we're launching our scholarship program and we hope to provide full rides for one to two individuals, you know, next year. I hope that number is two to four, and then next year, 10. I just want to help more people. Personally, Hannah and I are writing a book together that comes out this year.

We've been working on it for four years now, called Interabled, and it is a collection of love stories, both from our own life and the lives of an amazing group of couples that we had the privilege of interviewing for the book. I'm biased because I wrote it, but it's a really beautiful book that shows all the diversity and joy and love in relationships that involve disabilities. So that will be out later this year, wherever books are sold,

and I hope that everyone checks it out. Well, I wish you a lot of success. Shane, thank you so much for all you do, for your activism, for changing our world. Thank you for being my guest on All About Change. I appreciate it. Thank you so much for having me. Shane is tackling the goal of making the world a more accessible place in a multitude of ways with his tireless dedication behind each one.

I wish him to go from strength to strength. That's it for today's episode. Join us two weeks from today for my talk with child welfare advocate and former judge Ron E. Richter. Today's episode was produced by Rebecca Shasson with story editing by Yochai Meytal and Mijan Zulu. To check out more episodes or to learn more about the show, you can visit our website allaboutchangepodcast.com. If you like our

show, spread the word, tell a friend or family member, or leave us a review on your favorite podcasting app. We'd really appreciate it. All About Change is produced by the Ruderman Family Foundation in partnership with Pod People. That's all for now. I'm Jay Ruderman and we'll see you next time on All About Change..