TRANSCRIPTION

Shane Burcaw:

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.

Jay Ruderman:

Hi, I am 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.

Montage:

I say put mental health first because if you don’t-

Montage:

This generation of America has already had enough.

Montage:

I stand before you, not as an expert, but as a concerned citizen.

Jay Ruderman:

Shane Burcaw 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.

Shane Burcaw:

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 may not be a negative or a shameful experience.

Jay Ruderman:

He’s since written multiple books, founded a landmark nonprofit and built a YouTube channel with more than one and a half million followers.

Shane Burcaw:

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 does a woman like that ever want to take care of a man like him?”

Jay Ruderman:

I sat down with Shane to talk about what his journey looked like to get to where he is now.

Shane Burcaw:

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. 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 have a negative impact on my life. They acknowledged it. Yeah, life is going to be different than we imagined, but we were going to work together and figure out ways to have me live 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 an infant basically. Being handed this 300 pound piece of machinery sounds like a horrible idea, but as I was learning how to navigate this newfound freedom I had 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 get in trouble, although they didn’t love that, but they 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, the classic helicopter parent that you hear about. And I think that that ultimately is a disservice to a child because they feel 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.

And as I got older, they shifted that into helping me advocate for myself. When I was going to school and I needed maybe a newer 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, and this is why I use a wheelchair, and here’s why you should interact with me just as you do anyone else.”

Jay Ruderman:

A phrase prominent in Shane’s work, his blog, his nonprofit is, “Laughing at my nightmare.”

Shane Burcaw:

That came from learning that humor was a way to disarm people’s discomfort with my disability. At a very young 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 the 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 could get people over their own preconceived notions about disability a lot faster.

Jay Ruderman:

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.

Shane Burcaw:

When you live with a disability, even when you don’t live with a disability, life is inevitably difficult. We all face daily and year-long lifelong challenges, and humor does not solve any of them. I think that’s the most important headline is laughing about a problem that you’re experiencing isn’t going to 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 head space 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 growing up. My mom and my dad and my brother, we would relentlessly make fun of each other each night at dinner, and we would make fun of the problems we were experiencing all in a loving, lighthearted way.

But it taught me and my brother that it was okay to laugh about the more vulnerable parts of life. Nothing was off limits at the family dinner table, so if you couldn’t laugh about it, you were the odd one out. And I do think that if you’re able to step back from a problem that you’re facing and laugh about it with a friend, you should move forward in a more productive way.

Jay Ruderman:

But even with all the love, laughter, and support, Shane said there were still difficult times growing up.

Shane Burcaw:

So my disease is progressive, meaning that I get weaker as I get older, and I’ve always known that. But it wasn’t until eighth grade when I really 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’d 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 this I’ll call it 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 and this idea in the back of my mind that I was going to live a short life and that I was 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. It was such a negative thing in my head, and there was just a lot of self-hatred almost that wasn’t properly expressed. It was more it came out in sarcasm and judgments of other disabled people, and it was just a messy mental time for me. And then I got a little bit older as I was 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 a 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 a brand new idea for me that you could be happy and proud to be disabled in those years ahead that I began to examine a lot of my own stigmas and misperceptions about disability and questioning them, identifying all of the ableism that I had internalized throughout the years. Today, I’m 31 years old, and I love my life living with a disability. I wouldn’t have it any other way.

Jay Ruderman:

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.

Shane Burcaw:

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 because for so long we excluded and minimized the value of disabled people.

Jay Ruderman:

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.

Shane Burcaw:

I was fortunate to grow up in an area where I had access to all the medical care that I needed. All the best hospitals were right there in Philadelphia, all the doctors I needed to 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 needed. With that being said, I think I’m an outlier in that way. I’m very fortunate and privileged to have grown up that way because as I got older and met more and more disabled people, I’ve found that that’s often not the case.

Jay Ruderman:

Another important part of Shane’s activism is highlighting the normalcy of his life. One example, his love life.

Shane Burcaw:

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 non-profit 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 a couple million views. And one night while Hannah was studying, she 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, I saw your video. We have a lot in common. What’s up?” I read her email, and was instantly captivated by her voice and her interests and her worldview. And 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 within a few weeks we were like, “Oh, no, we have feelings for one another.” And that’s super inconvenient because we were 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. Thankfully, we had many 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 established as a writer, and I made the move out to Minnesota so that we could get an apartment together, and that began our life. And today we’re married and we live in LA.

Jay Ruderman:

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?

Shane Burcaw:

There’s two main types of misconceptions, and they’re the ones that we get online from people that want to share videos and then ones that we face out in the real world. The real world ones are often not as severe. They’re usually silly when people out in public say to Hannah, “Oh, is this your son?” Because they see me, and they can’t fathom that a non-disabled woman like Hannah would date a disabled man like me. But then online it goes a lot further because people are able to hide behind an anonymity. They double down on the idea that 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 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 because obviously it could never be real love. People say that I am ruining Hannah’s life, that by being with me, I’m holding her back and that she’ll never be able to live a full life. It’s all wrong, and it’s all based in inexperience and even a meaningful or purposeful ignorance and an 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 our advocacy in 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 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 work.

Hannah Burcaw (Sound Bite):

All right. 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.

Shane Burcaw (Sound Bite):

My toes bend as Hannah puts them in.

Hannah Burcaw (Sound Bite):

Just his big toe. I have to repeatedly push it straight so it doesn’t snag.

Shane Burcaw (Sound Bite):

Or so it doesn’t snap off.

Hannah Burcaw (Sound Bite):

Snap off.

Shane Burcaw (Sound Bite):

Like a thin level tree branch.

Hannah Burcaw (Sound Bite):

Uh-huh.

Shane Burcaw (Sound Bite):

All right. Shoes are on. We’re flying through this.

Hannah Burcaw (Sound Bite):

I know. Ready for our day.

Shane Burcaw:

It’s a double-edged sword, not to use a cliche, but it’s really effective in showing people the reality of disability. 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 does 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.

Jay Ruderman:

But Shane’s activism and advocacy for the disability community go beyond shining a light on his personal life.

Shane Burcaw:

SMA My Way 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 SMA My Way is to give a platform to people with SMA and their loved ones to show the world what we’re capable of and what living the life with SMA is really like. And so every year a group of advocates with SMA get together, and we dream big about what could we do to show the world a different perspective of SMA? We’ve made a song with an awesome performer named James Ian 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 or musical comedy called Most Likely Not To, and Hannah and I had the opportunity to help write that musical. We did have a small cameo role. I will not say that we starred in it. There were other much better actors that starred than us. It’s a great program, and, again, it allows us to dream big about ways to show the world what having SMA is really like.

Jay Ruderman:

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. And 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, and what do you wish that kids knew about disability when they’re growing up?

Shane Burcaw:

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. They just want to 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. If they ask a disabled person out in public, “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, don’t do that.” And then they shush 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 at wherever they are, and I try to explain whatever they’re curious about in a fun way and then making it relatable. 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. One of my favorite things is when a kid asks, “Who’s your favorite football team?” And I say, “Oh, the Philadelphia Eagles.” And they all go, “Oh, my God, I love the Eagles too.” They never realized, “Oh, we can connect and we have things in common.”

Jay Ruderman:

What’s your advice on how parents and teachers should be talking to kids about people with disabilities?

Shane Burcaw:

I think it’s important to frame disability not as a negative thing, not as what disabled people can’t do. So if you’re explaining why someone uses a wheelchair, rather than saying that’s because they can’t walk, maybe you say, “Oh, that wheelchair helps them move around.” Always being mindful to frame disability and accessibility devices as positive things. 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.

Jay Ruderman:

Much of Shane’s advocacy work is made possible through his non-profit, Laughing at My Nightmare.

Shane Burcaw:

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. I had an audience suddenly, and I wanted to 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 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. So it’s a big moment for us at Laughing at My Nightmare. But 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 help even that playing field in ways that are really important. People should not have to go without the devices that allow them to be comfortable and happy and productive.

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 a regular bike, and his family didn’t have the funds to afford a much more expensive adaptive bike. And so we provided that. She did videos of him playing with his friends and was awesome.

Jay Ruderman:

It’s amazing.

Shane Burcaw:

Those adaptive devices are so expensive, and until we can change that, we’re going to need organizations like ours and yours to help make the world more equitable for people with disabilities.

Jay Ruderman:

So how do people get involved? Let’s say people want to contribute. Where should they go to find the organization?

Shane Burcaw:

You can go to laughingatmynightmare.com. Obviously your donations are much appreciated, and they go directly to providing all of that equipment that I said. We only have one full-time employee, so our overhead is extremely low. 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 when whole 5K if you don’t want to. You can sign 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 would help you live a more comfortable or productive or healthy life, please 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.

Jay Ruderman:

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.

Shane Burcaw:

It gets me down some days. When I read the 10th comment that day telling me that I shouldn’t be alive, it’s tough at times, but I also use it as motivation. Each of those horrible comments is a person out there in the world who ultimately can change their mind and 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, 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 the idea that I had in my mind.”

For an internet troll, if you will, to reach out voluntarily and say, “Hey, I take back what I’ve said, thank you,” that is unheard of. And those are the moments that keep me going when I’m feeling overwhelmed by all the negativity. People can change, and they can improve their mindset. So if we can reach them, we should.

Jay Ruderman:

Ultimately, much of Shane’s life philosophy boils down to something pretty simple.

Shane Burcaw:

I believe that we have one life to live, and that making the most of it is important because I don’t want to come 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 your own mortality in the eye. But I had to do that when I was in eighth grade, and in the years that followed, and I learned what was then the prognosis for my disease, and it helped me just realize, “Hey, 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.

Jay Ruderman:

Yeah, that’s a great message. Is there anything you’re working toward now, any goals that you have that you can talk about over the next coming months and years?

Shane Burcaw:

Yeah, so with our nonprofit Laughing At My Nightmare, we’re always trying to raise more money so we can help more people. This year we’re launching our scholarship program, and we hope to provide full rides for one to two individuals. 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 Inter-Abled, 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.

Jay Ruderman:

Well, I wish you a lot of success. And, Shane, thank you so much for all you do for your activism, for changing our world, and thank you for being my guest in All About Change.

Shane Burcaw:

I appreciate it. Thank you so much for having me.

Jay Ruderman:

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 Chaisson with story editing by Yochai Maital and Mijon 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.