Quest Podcast: A Conversation with Steve Way
By MDA Staff | Friday, June 23, 2023
In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood.
Read the interview below or check out the podcast here.
Mindy Henderson: Welcome to the Quest Podcast, proudly presented by the Muscular Dystrophy Association as part of the Quest Family of Content. I’m your host, Mindy Henderson. Together, we are here to bring thoughtful conversation to the neuromuscular disease community and beyond, about issues affecting those with neuromuscular disease and other disabilities and those who love them. We are here for you, to educate and inform, to demystify, to inspire, and to entertain. We are here shining a light on all that makes you, you, whether you are one of us, loves someone who is, or are on another journey altogether. Thanks for joining. Now let’s get started.
All right. Today, my guest is Steve Way. Steve is an actor, a comedian, a writer, and a speaker. He was born with Ullrich congenital muscular dystrophy and is an advocate for disability awareness. Steve performs standup comedy and motivational speeches around the country and can be seen on the Hulu show that you may have well seen called, Ramy. Steve, thank you so much for being here with us today.
Steve Way: Oh man. Thank you, Mindy. I really appreciate it.
Mindy Henderson: Awesome. Well, I have a thousand questions for you, so I’m going to dive right in. Do you mind first telling us just a little bit more about your diagnosis and maybe when you were diagnosed? And how it really impacts your daily life?
Steve Way: Yeah. I think it was pretty obvious when I was born that something was wrong. I came out backwards, upside down, and with my feet wrapped around my head. Yeah. I’ve never been so flexible in my life. I kind of miss that flexibility. But when I was four, I was diagnosed with congenital muscular dystrophy, just because I was the only person in my family to ever have it. So really, I didn’t want to… But the early ’90s medical textbook kind of told you that. I didn’t find out I have Ullrich until I was 25.
Mindy Henderson: Really?
Steve Way: Yeah, yeah. And I really owe a lot of that through a very good friend of mine, Dr. Mohammad Abboud, when I went to Iceland with him now. He is an ER doctor at that hospital, but he’s got a lab in Georgia that was doing DNA sequencing for people with neuromuscular diseases who did not have a definitive diagnosis. And it’s crazy how all my life, I went from muscle biopsies and blood tests to just spitting in a tube. And that’s how I found out.
Mindy Henderson: Wow.
Steve Way: Yeah. And it was heavy because I wanted to know for so long, and I felt like it was such a missing piece to my identity. And once I figured it out and felt like I could finally put that puzzle all together.
Mindy Henderson: Yeah. I know so many different conditions in sort of the muscular dystrophy. The neuromuscular disease family can take a really long time to properly diagnose. And I can’t imagine how frustrating that would be. And it’s interesting to hear you talk about it in terms of just really having kind of a missing piece of your identity.
Steve Way: Yeah. When you’re in this community and you see subsets within that community of the different types, and you see people sharing information, sharing tips, advice, and I always felt like an outlier because I couldn’t fit into one of those smaller communities. It’s been life changing. I mean, I’ve met so many people who have the same little day-to-day problems that I have. And I always thought, “Oh, I’m just a little more messed up than I thought I was.” But now when someone with Ullrich is that your skin is also affected by it. So, for example, if I get a cut, it does a really long time to heal, and I never knew why. And so, I found out I have Ullrich. And it opened up so many more doors and it answered so many questions that I’ve been asking for the first 25 years of my life.
Mindy Henderson: Sure. Was it really about having a name for it or did it affect… Once you finally got that definitive answer, did it affect how you went about your daily life, what you talked to the doctors about, what the doctors were able to do for you in terms of how you approached your condition?
Steve Way: Oh, it was definitely both. When it comes to my doctors, like I said, it answered a lot of questions. So, it really helped when we were trying to find treatments for certain things, whatever. It allowed my doctors to do more specific research for me. Yeah. The name definitely helped. It definitely gave me some peace of mind. And it helped to have a label. I felt like I could kind of breath easier with it and just for my own comfort. Whether that’s rational or not, I don’t know.
Mindy Henderson: Sounds perfectly rational to me.
Steve Way: Yeah. Right. Thank you. But yeah, I guess when you see other people who have that specific name, there’s a part of you that gets a little jealous. And I feel like once I had mine, I felt like, okay now, I’m part of a community now.
Mindy Henderson: Yeah, yeah. So there are a lot of things that I want to talk to you about. You’ve got a fascinating career. But before we leave this subject, what would you say… Like I said, there are so many people in this community who spend years just like you did, trying to find the ultimate diagnosis. What would you say to other people who might be listening who are on that journey right now and are frustrated and haven’t quite gotten there yet? What would you say to them?
Steve Way: Either Google it or message me on Instagram and I’ll help you.
Mindy Henderson: Oh, that’s so nice.
Steve Way: Yeah. I mean, like I said, one of my very good friends helped me figure it out. So, I would love to pay that forward for someone else.
Mindy Henderson: I love that.
Steve Way: Yeah. The answers are out there. The tools are out there. We’ve come from a very long way from muscle biopsies.
Mindy Henderson: Yeah.
Steve Way: Like I said, you just spit in a tube.
Mindy Henderson: It’s true. Yeah. No, I was diagnosed back in the day. I’m not going to tell you how long ago, Steve, but it was a minute ago. And I was diagnosed with a muscle biopsy, which I know is not really the standard anymore. And it’s amazing to me how far medicine has come and diagnostic tools. So that’s a really generous offer. We’re of course, going to put your information in the show notes, so that people can reach out to you on social media. But let’s talk about your career a little bit. When you were younger, when you were a kid, what did you want to be when you grew up? Or did you always know that you wanted to be a comedian, an actor, and all of these different things that you are today?
Steve Way: So, this might be a bit of a winded answer. When I was a kid, I honestly wanted to be an astronomer.
Mindy Henderson: Really?
Steve Way: Yeah. Growing up, I used to watch reruns of Star Trek with my parents.
Mindy Henderson: Nice.
Steve Way: And Star Trek, specifically the Next Generation, made me realize that just because you’re disabled, it doesn’t mean you’re not important.
Mindy Henderson: Yeah.
Steve Way: It was the first time I saw a disabled character on television with LeVar Burton’s Geordi La Forge.
Mindy Henderson: Really?
Steve Way: Yeah, yeah. I remember just being only four years old sitting on the floor in my living room and watching this show. And my parents explained to me that, yeah, he’s disabled like me, but he’s important. He has a title, he has a job to do, and he does it very well. And just because I’m 10 and I’m different from other people around me, it doesn’t mean that I can’t be important as well. And my parents got me a telescope when I was a kid, and I’d go out in the backyard and just look up at the stars, the planet, whatever. And honestly, it’s something I do almost every night. I might get a little just philosophical and rambling here, but I’ve always found a lot of comfort looking up at the stars, especially the last I’d say, two years after COVID, after I walked down that year.
I like to look up and find the North Star because I feel like it’s always guiding me. I feel like the North Star is always there and it’s always something I can look up to and almost like ask for guidance, ask for advice. It gives me this feeling of safety knowing it’s there. And I woke up and I see, and I feel this starlight shining down on me. And it makes me feel like I have a purpose in this world. And I hope everyone else can feel that way because the stars are always there for us. And I feel so blessed too just still be here. I could just go outside and look up and there’s this marvel all around us. I’m sure I can think of 17 different reasons why I love to do that. But yeah, there’s just something comforting of having that guiding light in my life. It’s something that’s always there to guide me. Yeah.
Mindy Henderson: That’s amazing. I don’t think I’m ever going to look at the night sky the same way again.
Steve Way: Yeah. I hope not.
Mindy Henderson: I know. I’ve got goosebumps and that was such a beautiful answer. And seriously, I’m going to go outside and look at the sky tonight and think of you. I absolutely love that.
Steve Way: Yeah. I recommend everyone do that.
Mindy Henderson: Definitely.
Steve Way: Even if you’re not able to go outside, just look at your window. It’s special. Now, to really answer your question, I never really thought that I could have a comedy career. Yeah, I’ve always used comedy to draw me up as a coping mechanism for my disability. I started doing standup with my real-life best friend, Ramy Youssef, when I was 19. He really helped me get into it. But to me, it was just a hobby. And the reason for that was because when I was 14, I had scoliosis surgery and it almost killed me.
Mindy Henderson: Oh my gosh.
Steve Way: Yeah. I was within five minutes of my heart stopping.
Mindy Henderson: Wow.
Steve Way: Yeah.
Mindy Henderson: I had scoliosis surgery when I was 14 also, and it was not my favorite experience. I’m so sorry to hear it was-
Steve Way: No, it’s-
Mindy Henderson: … so traumatic.
Steve Way: Right. Everything happens for a reason.
Mindy Henderson: Yeah.
Steve Way: But I stopped breathing for two minutes about a month and a half after the surgery. It gave me pneumonia really bad in my right lung.
Mindy Henderson: Oh my gosh.
Steve Way: Yeah. And as soon as that happened, my doctors told me that if I got sick again, that’s going to be it and I won’t survive it. And I said, I probably wasn’t going to make it out of high school. So, I thought, “All right, what’s the point?” If my death is always around the corner, why am I going to start something I can’t finish?
So, when I started standup comedy, and [inaudible 00:14:56], it’s fun. It’s fun, but it’s kind of like a means to an end. How many years to pass my time? And then when I was 25, when I did get that official diagnosis, my doctors were like, “Oh no, Steve, you’re good. You’re healthy. I mean, you’re going to live for a long time.” And I was just like, “Oh no.” I never wanted to die, but I was ready for it. I had constantly prepared myself for it.
So, to be told in an instant that that wasn’t true, my entire life changed. And I’m still deprogramming myself to not have that constant belief that my death is right around the corner. But because of being told that for 11 years, I held myself back. I never could stand up. Seriously, I never thought I could take it to a level where I’m at today. But I am very thankful for the opportunities that I have right now. And I am taking it to a level I never thought would happen in my wildest dreams.
Mindy Henderson: I love that. You are soulful, my friend.
Steve Way: Oh, probably more, I got more.
Mindy Henderson: Oh my gosh.
Steve Way: Yeah.
Mindy Henderson: You’re absolutely amazing. I love the way that your brain thinks, and I love the gratitude that I’m hearing from you, just for what you’re doing and what you have today. Can I ask, how did your parents or the adults in your life influence you so that you could pursue your dreams?
Steve Way: I mean, going back to what I said about Star Trek, they just always tell me that I’m important. Just because I can’t do the same thing as my classmates could, it didn’t make me any less of a person. They were my biggest advocates. They fought for everything I needed, and they helped me understand that just because I needed an accommodation in school, it didn’t give me an advantage. It didn’t make me better or smarter than anyone else. It just put me on the same playing field. It put me at the same level. So having that, been able to use my talent, my intelligence, whatever, to the absolute best of my abilities without having to compromise them because of my disability.
Mindy Henderson: Yeah.
Steve Way: And they really helped me to advocate for myself, whether it was in college, whether it’s finding my health insurance, whatever, they really, really set me up to fight for myself.
Mindy Henderson: That’s so great.
Steve Way: Yeah. And it’s probably one of my best assets that I have.
Mindy Henderson: Nice. Are your parents funny? Or where did your sense of humor come from?
Steve Way: I don’t like to claim that one all on my own. So, I wanted to say, I was inherently born with it.
Mindy Henderson: Okay. Okay. That definitely… I could see that. So why do you think humor and laughter are so important in life?
Steve Way: I mean, it’s the truth. Real comedy, real humor, it’s the truth. And when I first started doing comedy for the first time, an interviewer asked Ramy if he thought my comedy was sad. And Ramy said, “No, it’s not sad at all. It’s the truth. And if the truth is sad, well, oh, well, that’s life, but it’s real.” And there’s something about being on a stage and using the absurdity of my reality to make people laugh, but at the same time, educate people about what I go through as a disabled person.
Mindy Henderson: Yeah.
Steve Way: There’s something really unique with that. I’m not on stage telling the story of every disabled person in the world. I’m telling my story and that’s it. And that’s because I cannot enjoy the faith to tell anyone else’s story. That’s not up to me. All I can do is tell my own story.
Mindy Henderson: Yeah. Well, and that’s what makes it authentic too. I don’t know. Tell me if you agree with this, but I feel like finding humor in our situations and all of us have things in our life that are hard, but I think if you can find the humor in them, do you feel like it almost takes some of the power away from those harder things?
Steve Way: Honestly, I think it’s the opposite.
Mindy Henderson: Yeah.
Steve Way: I think it might give them more power, only because it brings attention to it. And then that allows me to really take more control.
Mindy Henderson: Oh, nice.
Steve Way: Yeah. I almost feel like I have to give up power in order to take it back, because I have to take a step back and have to really see the reality of what’s going on.
Mindy Henderson: Yeah.
Steve Way: I’ll give you a little story. During the pandemic in 2020, I took my Medicaid provider, Horizon NJ Health, to court because they kept denying me more at-home care hours. So, I took them to court. And even with the judge and the doctor I’ve seen for over 20 years, a judge ruled against me because she said that I’m not disabled enough.
Mindy Henderson: Oh my gosh.
Steve Way: Now that’s kind of hilarious. Right? If you look at me, you’re like, “Oh, he’s going to die tomorrow.” So, it’s like, what more do I have to do to be more disabled? And when you point out the absolute absurdity of it all, that is like, okay, this is what we’re dealing with. This is the system that so many of us are up against. And this is what we have to navigate just to literally survive.
Mindy Henderson: Yeah, yeah.
Steve Way: It’s stupid.
Mindy Henderson: It is stupid. Thank you.
Steve Way: Yeah. Of course. But once you were able to kind of find the levity in all of it, you can exhale a bit, and then be like, “All right. Now, it’s time to fight.”
Mindy Henderson: It’s true. It’s true. So is there any part of your comedy that is intended to try to help people understand or become more comfortable with disability? Or is your goal really just to make people laugh?
Steve Way: I think it’s to educate, to educate and make people laugh.
Mindy Henderson: Yeah.
Steve Way: It’s not my job to make people comfortable. I can’t decide that for my audience. If they’re uncomfortable, there’s nothing I can do about that.
Mindy Henderson: True.
Steve Way: But they did also come out of it learning something that they never knew before. Whether it’s how meditative works, whether it’s what I do on a daily basis, whether it was what I… I don’t know. My school, whatever, adulthood, getting a job, dating, relationships. I think at the end of the day, people will hear my set and they’ll say, “Oh, he’s not that different from me. He had the same problems I do with relationships, making money moving out.” I just do it differently. That doesn’t really make me different because we all do things differently.
Mindy Henderson: So well said.
Steve Way: Yeah. I’m just giving them a different perspective from someone go on the outside that looks very different.
Mindy Henderson: Yeah. Interesting. So how then did you get your start? I know you’ve mentioned the first time that you got up on a stage and you were with a friend to do standup comedy. What was that like? Was that really your start in the entertainment world? Or how did you get your start?
Steve Way: I think I really got my start when I was about nine years old.
Mindy Henderson: Did you?
Steve Way: Yeah. I did a lot of speaking with the NBA.
Mindy Henderson: Yeah.
Steve Way: I was New Jersey’s general ambassador two years in a row. So, I traveled all over, spoke all over. So, getting up on a stage felt very natural to me. And like I said before, I’ve always used comedy throughout my life to kind of cope with having dystrophy. And Ramy helped me just combine the two. And then I eventually transformed that into acting. So, I feel like I’ve been doing this for more than two thirds of my life.
Mindy Henderson: That’s so great. That’s great. I actually also started… I do motivational speaking as well. And I was the Texas, and then the Florida State ambassador when I was a kid. I actually gave my first speech when I was four. I think it was a terrible speech. Don’t get me wrong. But yeah, I definitely caught the speaking bug early.
Steve Way: But you did it. That’s all that matters.
Mindy Henderson: Yeah. Absolutely. And I loved it. And I think that I learned really on, I’m sure you learned the same thing, just the power of sharing our stories. And I think so many of us keep so many things private because that’s maybe what we think that we’re supposed to do. But I think there’s so much power in sharing our stories with each other. So do you mind telling me a little bit more about your… And first of all, are all things created equal for you? Or do you consider yourself an actor first, a comedian first, a speaker, an advocate, or are they all just equal parts of you?
Steve Way: Wow, that’s really tough.
Mindy Henderson: Is it?
Steve Way: I definitely focus on one over the others at any given time, but I’m also ready for any of them at any given time.
Mindy Henderson: Love it.
Steve Way: Right now, I’m really focusing on doing standup. Right? Because I’m a TV writer. All the TV writers are on strike right now. So, I’m not doing a lot of writing like that, a lot of my screenplay writing. It’s hard to get active jobs right now because we want to stand in solidarity with the WGA, the Writer’s Guild of America. And right now, at the end of June, it’s very possible that the acting union, the Screen Actors Guild, is going on strike as well.
Mindy Henderson: Oh my gosh.
Steve Way: Yeah, yeah. It’s a lot. But I can write now and focus on stand up, but if someone emailed me right now and said, “Steve, we need you for a speaking engagement tomorrow,” I’m so ready.
Mindy Henderson: Yeah.
Steve Way: That’s not something I really had to plan for. If I was preparing for an acting role and someone said, “Hey Steve, I have a 10-minute standup set open tomorrow night. You want it?” Yeah, I’m there. I’m there. Yeah. So yeah, that definitely went to focus on the individual parts, but I’m ready at any given notice for any of it.
Mindy Henderson: That’s fantastic. So tell me if you don’t mind or talk a little bit more about your motivational speaking. What is the message or the messages that you are using that particular platform to communicate? What do you like to speak about?
Steve Way: It’s kind of like into the whole inspiration trope.
Mindy Henderson: Oh, yeah.
Steve Way: I’m kind of twisting around, but I don’t mind when people say, “Hey Steve, you really inspired me to get up on stage.” When I hear someone say that it’s very rewarding because I feel like I’m able to get people to overcome their fears. Something I like to say a lot is fear is the mind killer. Fear is very destructive.
Mindy Henderson: It is.
Steve Way: So, if I’m going to help someone overcome their fear just by doing what I love, yeah, I’m all for that. And I want the listener to know, that’s very different from someone saying, “Oh, I never saw a disabled medium before. That’s so inspiring.” No, not really. We all know what that means, and I get it. I’m not going to shame someone having that belief. It’s fine.
Mindy Henderson: Sure.
Steve Way: They said they never saw a disabled to come in like me. They probably never even heard someone that looks like me speak before, and that’s not their fault. And this happens, it’s fine. But when the disabled community say, “Steve, you inspired me to write something. You inspired me to start a blog,” or whatever, come on, that’s awesome. That’s awesome.
Mindy Henderson: I couldn’t agree with that more. And thank you for putting it into perspective that way, because you’re right. It’s two very different things. And yeah, I love that. And in fact, you talked about bravery and all of that. And one of my favorite things to say is that it’s okay to be afraid as long as it doesn’t keep you from being brave.
Steve Way: Yeah. I mean, we’re all afraid about something. I just tell people, don’t let it consume you and don’t let it stop you from living your life.
Mindy Henderson: Yeah, yeah.
Steve Way: You’re on this all bad. I’ve been there.
Mindy Henderson: Yeah, totally.
Steve Way: I won’t resolve it there. But being 32, I’m now more than half my life passed when I almost died. So, it’s like, I live in fear. Life is short. It really is. The days might feel long, the weeks might feel long, but life is so, so short.
Mindy Henderson: It is. And any given day to look back on your life and how far you’ve come, all of us, I think you can really see how short it is and how quick it goes by.
Steve Way: And living with regrets can be a very debilitating feeling.
Mindy Henderson: So true.
Steve Way: I’m lucky to say, I maybe have three regrets throughout my entire life, but honestly, three feels like three too much.
Mindy Henderson: Yeah.
Steve Way: And again, I just tell people, if you want to do something, just do it, just handle it. Now, if it doesn’t work out, fine.
Mindy Henderson: Yeah.
Steve Way: So now you know what to do next time.
Mindy Henderson:It’s true, 100%. So I want to ask you kind of a serious question here. We hear a lot about representation in entertainment and all of that. Have you personally found the entertainment world to be inclusive? Or have you experienced more barriers or have you experienced more inclusion? Or is that even a fair question?
Steve Way: No, that’s absolutely fair. I would say, the industry as a whole overall, is very exclusive. There are a ton of barriers. But within the individual communities, I’ve met and I’m now thankful to be a part of, it’s very, very inclusive. When Ramy wrote my part for his show, the first thing the producers or the execs said was, “Great, who’s going to play Steve?” And Ramy said, “Well, Steve is going to play Steve.”
Mindy Henderson: Yes.
Steve Way: And they were like, “Well, we don’t know about that.” So, I had to audition for my own role.
Mindy Henderson: Nice.
Steve Way: I’ve had agents upset [inaudible 00:34:38] or whatever, asked me if I ever thought of having someone else play me in my own show. And we know what that means, somebody who’s not disabled.
Mindy Henderson: Yeah. Of course.
Steve Way: Yeah. I mean, I’ve had TV execs tell me that the idea for my show might make people uncomfortable because it’s not 100% optimism. And I’m like, “Well, that’s not my life, so I’m not going to compromise my life just because of this hypothetical feeling you have about your audience.”
Mindy Henderson: Well, and honestly, I can think of at least a half a dozen shows right now that are not 100% about optimism.
Steve Way: No, of course not. And that’s not the point of television.
Mindy Henderson: Yeah, yeah.
Steve Way: Television is supposed to be real. It’s supposed to bring you into a world that you’re not accustomed to. That’s why my favorite show on TV right now is Succession.
Mindy Henderson: I love that show. Yes.
Steve Way: Oh, my goodness. It’s brilliant. I know a lot of people who worked on that show. And I’m so lucky to have seen the behind the scenes a bit. But it’s a world that the average person doesn’t live in. And the characters are absolutely just abominable people.
Mindy Henderson: Oh, they’re terrible people. Yes.
Steve Way: Right. Right. And you’re not supposed to root for them, but we get sucked into that world.
Mindy Henderson: 100%.
Steve Way: Because it’s so different.
Mindy Henderson: Yeah.
Steve Way: And I did it. That’s my world. But people are so afraid that because I look different, that audiences will be turned off. And I don’t buy that for a second.
Mindy Henderson: No.
Steve Way: But what do I know?
Mindy Henderson: Well, I think you know a lot is the answer to that question, but I’m curious, what’s the response been to Ramy? What do people come up and say to you?
Steve Way: They tell me they love my work.
Mindy Henderson: Oh, that makes me so happy.
Steve Way: Yeah. They tell me that I’m their favorite character, which I know I am. I’m the best.
Mindy Henderson: You are the best.
Steve Way: Yeah. Best character in the whole show. Yep.
Mindy Henderson: That’s awesome.
Steve Way: I’ve had so many people in the disabled community almost thank me for telling our stories on TV in a way that’s never been done before. There’s an episode in season two, I won’t get into it, it’s a little inappropriate, but…
Mindy Henderson: So we all need to go watch it if we haven’t already.
Steve Way: Season two, episode seven. It’s titled Atlantic City, but it’s about a topic that disabled people are told that we can’t talk about. And yet, it’s something that’s very, very real. And it’s something that affects a lot of us. And it’s something that we deserve to talk about and deserve to happen to us because everyone else is allowed to. Right? But it’s expected for us to not do it. And it’s not fair at all. So Ramy and I were like, “Screw it, we’re going to make an entire episode about it.” And I had so many people message me and be like, “Steve, you made me comfortable to finally discuss this and to seek out the help that I need for this specific problem.”
Mindy Henderson: Wow.
Steve Way: And that is probably top three most rewarding feelings I’ve ever had in my entire life.
Mindy Henderson: Oh, I have goosebumps right now.
Steve Way: It’s just it’s so wild that I have this opportunity and platform to tell those stories. And again, I’m telling my story. Right? At the end of the day, I’m me. I’m Steve Way. I’m a straight white guy. I don’t know what it’s like to be a woman and disabled, gay and disabled, black, trans, Asian.
Mindy Henderson: Yeah.
Steve Way: Indigenous and disabled. I’m not going to tell those stories that I can’t. Right? And those people deserve, and their stories still too. And my dream is to have a platform big enough to where I could open those doors, so they can tell their stories by themselves.
Mindy Henderson: Well, I feel like that day is coming. I really do. I would give you that platform.
Steve Way: It’s soon. We’re definitely a lot closer than we’ve ever been.
Mindy Henderson: Yeah. I think it as much. Am I correct that you were on… You were a part of the ReelAbilities Film Festival, is that right?
Steve Way: Yeah, yeah. Yeah, just a month ago.
Mindy Henderson: Yeah. Tell me about that. The more that I hear about the ReelAbilities Festival, I want to go one of these days because it sounds absolutely magnificent. And it’s such… Oh, what’s the word I’m looking for? It’s just, it’s like the polar opposite of what I feel like Hollywood is, and the platform that it’s giving to people and the awareness that it’s bringing to our community. Tell me about it and what it was like to be involved.
Steve Way: It’s absolutely fantastic. I had the opportunity to speak on two different panels and I’m just so privileged to be asked to do that. Shout out to Isaac for organizing this whole thing.
Mindy Henderson: I know.
Steve Way: It’s truly wonderful. I don’t know how the man does it. There’s nobody who sleeps. What is going on?
Mindy Henderson: Yeah.
Steve Way: But it’s a wonderful institution because it finally allows us to showcase how good we are. Well, one thing I talked about in one of the panels was that the biggest hurdle disabled people face in entertainment is that we’re just never given a chance to just show how good we are.
Mindy Henderson: Yeah.
Steve Way: All we want is just the chance.
Mindy Henderson: Yes.
Steve Way: That’s it. That’s not a lot to ask for.
Mindy Henderson: I know. And I know so many talented people and it makes me crazy that so many of them so many times don’t get the opportunity. Just like what you’re saying.
Steve Way: Yeah. That is unfortunate because we are good enough, if not better. A lot of the performers are writers out there. Yeah. It’s sad. I mean, I always go back to the Academy Awards in 2021 when they made such a big deal about having a ramp. And the way that I saw it was they just admitted to breaking federal law for the last 30 years by not having an inflatable stage. And that was the year Crip Camp was nominated.
Mindy Henderson: Such a good documentary.
Steve Way: Yeah. Rest in peace, Judith Heumann.
Mindy Henderson: Right.
Steve Way: That’s an absolute pioneer and we lost a good activist. And if that doesn’t tell you how the industry feels about it, I don’t know what does. You remember the years leading up to that, they kept having so many discussions about equity, inclusion, diversity. And I remember they put out a statement done on how they’re going to do better. And they enlisted every minority group except for disabled people. And at that point, what should we do? They literally forget about us. They won’t even give us a seat at the table. And I’m like, “No problem. I’ll bring my own seat.”
Mindy Henderson: There you go.
Steve Way: That’s fine. But this is what we’re up against.
Mindy Henderson: Yeah.
Steve Way: We’re up against an entire industry that either sees us as props or just doesn’t see us at all. And at that point again, it’s like, what do you do?
Mindy Henderson: I know. Well, do you feel like it’s changing? You sort of being in this industry and working on the projects that you’re working on, do you feel like we’re making progress? And if-
Steve Way: Oh, yeah. I mean, just the fact that we’re talking about it, tells me we’re making progress.
Mindy Henderson: Yeah.
Steve Way: There’s massive change happening. It’s way too slow.
Mindy Henderson: Yeah.
Steve Way: It’s way too slow, but no, it’s happening. It’s absolutely happening. Just the fact that I’m on three seasons on this Golden Glove winning and nominated show is insane. The fact that I’m prepping to do my hour standup special for HBO.
Mindy Henderson: Oh.
Steve Way: Yeah. It’s wild.
Mindy Henderson: Oh my gosh. When is that happening?
Steve Way: Whenever the writer strike is over.
Mindy Henderson: Okay. Okay. I was about to say, you may not be allowed to tell me yet, but…
Steve Way: No, no. Honestly, I can’t say because I don’t know.
Mindy Henderson: Okay. Well, let us know.
Steve Way: Yeah, of course.
Mindy Henderson: And we will get the word out.
Steve Way: Absolutely.
Mindy Henderson: That is so exciting. Oh my gosh. I love it. I love it. So gosh, I could talk to you all day. And I’m sorry to say that we’re running out of time, but tell me. So you mentioned the HBO thing. What else is coming up next for you? I know that we’ve talked a little bit about the writer’s strikes and some of the roadblocks that your industry is facing right now, but what’s in the works?
Steve Way: I definitely have a couple of things up my sleeve I can’t talk about just yet.
Mindy Henderson: Okay. That’s fair.
Steve Way: But the biggest thing after my standup special is trying to sell the show that I developed about my life.
Mindy Henderson: Yeah.
Steve Way: I have the brilliant, Judd Apatow, helping me out with that.
Mindy Henderson: Oh my gosh, that’s huge.
Steve Way: Yeah. He’s producing my show. He’s an absolute, wonderful, magnificent person.
Mindy Henderson: Wow.
Steve Way: He was giving me so much guidance in just the last two years, but…
Mindy Henderson: Wow.
Steve Way: Yeah. We tried before. We got closed. It didn’t work out in the end. But yeah, we’re going to pick up where we left off and we’re going to find someone who believes in us.
Mindy Henderson: I love that.
Steve Way: Yeah. And someone who really sees our vision and understands that audiences will resonate with it and will understand it.
Mindy Henderson: Well, I can’t wait for it. I will be first in line to watch that show because that sounds absolutely amazing. I’m so happy for you. I love any chance I get to talk to someone who not only has the amount of success that you’ve experienced, but is such a nice person. You’re so much fun to talk to and you’re so down to earth. I love your honesty. And so just having you here today was such a treat.
Steve Way: Thank you. I really, really appreciate that. And thank you for allowing me to speak today.
Mindy Henderson: Oh gosh, absolutely.
Steve Way: Thank you. Yeah, thank you for giving me the platform.
Mindy Henderson: My pleasure.
Steve Way: I hope we can do this again sometime when after things happen, when I have more updates and just talk about how the whole community is evolving.
Mindy Henderson: I would love that. You name the date and the spot is yours. So I would love it if you would just like to close us out with… And if there’s anybody listening who may have a dream. And we’ve talked a little bit about this, but I just want to leave it kind of on this note. Anyone who’s listening that has a dream that maybe feels too big for them or that they’re a little bit afraid to pursue, what would your closing thoughts to them be?
Steve Way: Just do it. Yeah. It’s probably intimidating or daunting, but so was then out of bed in the morning. We don’t know what the day has in store for us. And then we only have one life. And it can radically change in an instant. Yeah. Anyone can get hit by a bus tomorrow, but it’s different for us when we can get a cold and that can put us on a ventilator for the rest of our life. Our reality isn’t much different. I don’t mean to say that to scare people, but-
Mindy Henderson: No.
Steve Way: … it’s just that, I don’t know, every day is a gift. And I think a lot of us, including myself sometimes, get caught up in how crazy this hell world is that we live in. And we lose sight of how beautiful everything really is. And what’s something I like to ask someone very close to me every night is, what’s something that made you happy today?
Mindy Henderson: Yeah.
Steve Way: It doesn’t matter what it is you mean. It was just like, you want to really get a cup of coffee, whatever.
Mindy Henderson: Yeah. Or seeing the stars. Right?
Steve Way: That’s right. That’s right. It’s just to remind you that there are good things out there in this starry world, that there is happiness out there no matter how small it might be. And I think once you do that, the world seems a little less scary, a little less intimidating. And I think it gives you just a little more confidence to go out there and accomplish whatever it is you want to do. And again, if you fail, who cares?
Mindy Henderson: Exactly.
Steve Way: We all fail, right? No one’s perfect. There’s no such thing as perfect. And failure is good because it allows us to learn from our mistakes and it gives us the opportunity to try again. And of course, it’s easier said than done, but again, once you take a step back to see the big picture, I don’t know, I feel like not much really matters. And it’s really up to us to create our own happiness, right? Because there’s no one’s going to do it for us. At the end of the day, we just have ourselves.
Mindy Henderson: So true.
Steve Way: Yeah. Mention yourself, your best friend.
Mindy Henderson: Yeah. And some of my best stories have come from my failures. So well said. Again, I just really want to thank you for being here and I am going to hold you to it. You’re going to have to come back and talk about more progress and your upcoming projects.
Steve Way: I’m down. Thank you so much.
Mindy Henderson: All right. Thank you.
Steve Way: Thank you. It’s all there to forever.
Mindy Henderson: Thank you for listening. For more information about the guests you heard from today, go check them out at mda.org/podcast. And to learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest magazine or to Quest newsletter, please go to mda.org/quest. If you enjoyed this episode, we’d be grateful if you’d leave a review, go ahead and hit that subscribe button, so we can keep bringing you great content and maybe share it with a friend or two. Thanks everyone. Until next time, go be the light we all need in this world.
TAGS: Community, Mental Health, Relationships, Young Adults
TYPE: Blog Post
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