Title:
Do It Scared
Subtitle:
Mindy Henderson on disability advocacy accessible air travel and finding her voice
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.
Let’s go.
Welcome back to Pushing Forward with Alycia. I’m Alycia, and I’ve been looking forward to this conversation.
Today’s guest is someone I genuinely respect. Not just for the work that she does in the world, but for the woman that she is and how she shows up. Mindy Henderson is a speaker, author, and a powerful voice in the muscular dystrophy community. She’s the vice president of Disability Outreach and Empowerment at Muscular Dystrophy Association, and the editor-in-chief of Quest Media.
Where she’s helping build award-winning platforms that are centered around storytelling, and visibility, and connection. And before all of that, she spent about 20 years in software leading teams, building systems, and leading as a boss with a disability.
She’s the author of The Truth About Things That Suck. Love this. We’re definitely diving into this. She’s just somebody that embodies everything that a powerful woman should. And she’s somebody who I met several years ago that we’ve been in each other’s corner cheering each other on.
Mindy, welcome to the show. I’m so happy that you said yes.
Mindy Henderson: Thank you so much for having me. I have also been looking forward to this. I listen to your podcast. I’ve seen a thousand other amazing guests come and go. And it’s just such an honor to be here.
Alycia Anderson: Oh, it’s so good to see you. My favorite episodes are the ones that my friends come on. Yeah, I love it. Yeah.
Mindy Henderson: Let’s start with a question. What has been taking up the most space in your mind lately in advocacy?
Ooh.
Alycia Anderson: Big question.
Mindy Henderson: That is a big question. Let me think. There’s no shortage of work to do in the advocacy world. It’s good and it’s less good, depending on how you look at it. Definite job security in the world of advocacy, I will say. I spend a fair amount of time on accessible air travel. And that continues to be a passion area of mine, and something that I am like a dog with a bone about getting wheelchair spots on airplanes.
I just am not gonna rest until that happens. I’ve gotten such an education since I’ve dipped my toe in the advocacy space, particularly with air travel. And it’s way more complicated than I think anyone out there, that’s not part of the aviation industry, would think. And knowing what I know now, I get why it’s so hard to make this happen. It’s a very regulated, very complicated industry. But that said, I also know that where there’s a will, there’s a way, and I feel like we’ve got proof of concept. That’s, I think, what is spending a lot of rent in my brain right now, what’s taking up a lot of space.
I, also, am always working on things related to healthcare and making sure that financing of research and science can still continue to happen. Those are probably, I would say, second, in terms of the amount of time that I spend on things. I continue to be passionate about employment for people with disabilities. Those are the top three space takers that come to mind.
Alycia Anderson: You mentioned travel. Let’s talk about that one, just for a minute, because you’ve done some pretty big campaigns on this, and you’ve been, I think, on Capitol Hill a little bit. Haven’t you been? So, talk about some of the challenges that we’re trying to overcome.
Because I sit on planes often next to perfect strangers, and they start to ask me about, really, the lived experience of being a wheelchair user on a plane. And I think most people, to your point, they don’t actually realize what the challenges are. Maybe we, as disabled people, also don’t realize how many hoops we have to jump through to make change.
Can you connect a couple of those dots just from an educational standpoint?
Mindy Henderson: Yeah, it’s very true. I think that there’s still so much awareness that needs to be done. Because what happens when a wheelchair user gets on an airplane, more often than not, happens behind closed doors. And that’s by design. There’s an element of privacy that needs to go into it because as, you well know, air travel is the last mode of transportation in our country where you have to be separated from your mobility device. For someone like me, I don’t stand or walk, so that means having to be lifted by strangers. There’s a lot of orchestration that goes into getting onto a plane. And yet, when you think about making change in this space, you would look at the problem. And I think so many people see movie theaters that have seats that are missing, or seats that flip up, and things like that for when a wheelchair user comes in. At first blush, you would think, “How easy is this problem to solve?” But in fact, every screw, every bolt, every piece of wire on an airplane has a job to do. And has to be so incredibly well-tested and documented, and crash testing has to happen, and economic feasibility studies have to happen, so that airlines can operationalize.
If you think about everything that would have to change to get wheelchair spots on airplanes, everything from the reservation systems to the actual airplanes themselves being retrofitted, to training of staff, and flight crews, and people. There’s a lot there that needs to happen before we can check the box of having the wheelchair spot on airplanes.
Alycia Anderson: Wow. I mean that just painted a picture.
Mindy Henderson: Yeah.
Alycia Anderson: What do you think can be done now in the interim to make it more humane for us? When we don’t have that, what’s the biggest challenge that we could overcome without changing anything that was physical infrastructure?
Mindy Henderson: Yeah. I love this question. And the reason that I love it so much is that there’s actually a deadline coming up at the end of June. There was a Department of Transportation at the end of 2024, finalized a wheelchair user rule, that implemented a lot of new regulations and things. It was a very full rule.
It was really exciting to see it get finalized. Everything that they set out to do in that rule, they also put a timeline and a schedule to it. And there were things that were supposed to be executed and implemented within two or three months, and then there were things that were gonna take a year or two to make happen. This is one of those things. The new rule mandated that there be some new training implemented on the parts of the airlines. That is so important because no two people with disabilities are alike, and there is a really big opportunity in air travel to jeopardize someone’s dignity, and their safety, and their overall health and wellbeing. So knowing that this deadline is coming up at the end of June when airlines are supposed to have implemented and trained all of these staff, who are tasked daily with helping us with transfers and helping make sure that our mobility devices get onto airplanes safely and without being damaged, I think it’s huge.When you think about what can go wrong. And I hate to put it that way, but in a transfer of a human, or their wheelchair, or scooter, or other mobility device, these are no longer just wheelchairs. They’re really sophisticated medical devices with therapeutics built throughout, and they’re customized, and all of that. To put something in place that empowers the people that are responsible for making these things happen, I think is absolutely huge. And I personally can’t wait to fly in July and test out all the new training.
Alycia Anderson: You know what? I love that you just used the words “empowered their employees,” because I think that is one of the biggest mishits and disconnects between the consumer, the disabled person, and the employees, who, oftentimes, show it on their face. And I’m gonna air quote, if you can’t see me, “are forced” to do these tasks, where they maybe haven’t, or probably haven’t been trained properly, and trained on the why, and the empathy piece of it, and the human piece of it.
I was just flying last week. There was another woman on the plane. I can transfer myself, but there was another woman on the plane that needed a full transfer. There was three people in there to help her. And one of the gentlemen that was there to help her, you could just see it on his face.
He didn’t wanna be there. He didn’t want anything to do with this. He was resistant without words. But you can read the room, just without words.
Empowering employees at any level, really in any organization, is so important to understand the humanity of it.
We’re having a big miss in that, in a lot of different advocacy points in employment in general, but definitely in the airlines. So I love that you just said that.
Mindy Henderson: Yeah, it’s so true. I’ve spoken with a number of these people over the years who, either, are tasked with these responsibilities, or they’re standing by watching what’s happening. I would say that in general, across the board, the staff at the airlines who are responsible for doing these things, they don’t wanna drop me any more than I want to be dropped. You can tell that, oftentimes, they feel badly that there’s not a better solution. If we can enhance their training and make everybody feel comfortable or more comfortable with what’s going on, I think it’s gonna be a huge step for the disability community.
Alycia Anderson: I just wanna thank you for your advocacy in this. When all that stuff was happening in 2024, your presence was very visible and impactful during that movement. And when those laws were passed, we all cheered. I saw your face there advocating with the highest people that were making decisions, and I wanna personally thank you for showing up for that because that was something that we all were like, “Thank God. Finally, something is happening here.” This is your Judy Heumann moment. It’s a big deal. It’s a big deal.
Mindy Henderson: It was something I was really, proud to be involved in. There were thousands of advocates all over the country, who had their hand in what came about which was great, and it was the biggest thing that I’ve ever been a part of in my life. But yeah, it’s exciting.
I think that the disability community has a voice like we’ve never had before. People are coming together. I didn’t fly for 14 years before 2024, when I happened to get invited by the advocacy team at MDA to go and speak to Capitol Hill about accessible air travel.
And I was like, “I guess to do that I’m gonna have to get on a plane.” It’s probably the only thing that would have gotten me back on an airplane knowing all of the challenges that come along with it. It means the world to me to be part of a solution.
Alycia Anderson: I was so proud of you. We’ve been friends on this advocacy journey when we were really starting out and trying to build something. So I was just really proud to watch you be as visibly present as you were in that movement.
It’s just the beginning for you, it’s just tapping into the surface of it, but that was a job well done.
Mindy Henderson: Thank you. I appreciate that.
Alycia Anderson: Okay. So my question to that is, before you started to own all of this, who you are, your advocacy, what did it take for you to get here? Let’s look back a little bit. Let’s talk about you as the younger disabled woman, girl navigating your disability.
Can you talk through that? How’d you get to this point?
Mindy Henderson: Yeah. It’s been a very roundabout kind of journey, and if you had told me seven or eight years ago that I was gonna be working in advocacy, I would have called you a liar to your face.
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Mindy Henderson: I don’t think it happens very often where a person chooses this work. I think this work chooses you.
And that is definitely what happened because growing up and working, like you said, in high tech for 20 years, where I was the only person in a wheelchair I ever saw. I spent a lot of years, and I hate telling this story, but I also love it because I hope somebody out there will hear it that maybe is feeling the same way that I did. It’s ironic because you can’t hide a wheelchair, and yet that’s what I tried to do every day of my professional life, because I was terrified of looking vulnerable or of having to compete with other people who were not wheelchair users. And in my own mind, I created all of these stories that may or may not have been true, but a lot of stories about how I was being judged and what people were thinking of me. “Did I not get that job because I didn’t have the skills or was it because I’m a wheelchair user and they questioned my stamina, or anything?”
It makes me sad now that I’m doing what I do now. And I’ve learned that when you lean into who you fully are is when the magic happens, and when you feel a weight lift, and when you start to see the world around you responding differently to you. I wish that I had figured that out sooner because I also think that I have probably some innate gifts that I withheld from my employers in that world because I was afraid to show that side of me, or to speak up about this thing or that thing.
And that’s a shame. It took me leaving the high-tech world, after 20 years in high tech, not being able to find a job after the company I was working for was acquired and I was laid off, as tends to happen. I decided one day, I had always wanted to be a speaker, and decided, when I was tired of hitting my head against a brick wall, to write this book and build a speaking platform. And to do that and to do it authentically, I did really have to abandon any notions of trying to hide who I was. I had to be me for all intents and purposes, like it or leave it. And it was one of the best things that could’ve happened to me because it led me to my work at MDA. Now I’m surrounded by a brilliant, creative, wonderful community of people, who are talented, I get to be immersed in every single day, and do the work that I’m doing now.
Alycia Anderson: Okay. So there’s so much to unpack right there. First of all, I have the same exact 20-year experience in tech. The only one in a wheelchair, hiding it as best as I can so I get invited into whatever it might be or I get the promotion or whatever. I have the same experience of always wanting to be a speaker, not knowing how to do it, never thinking that I wanted to be an advocate either.
And my question to you is, when you got to that point. You said you went from hiding to knowing that you had to be all in. When you first started speaking and writing your book, were you authentically all in? Because for me, it’s taken me a few years to say, “You know what? You need to be who you are. Like you, Alycia. Not you, Alycia, the advocate that all the other advocates think you need to be. Not Alycia that all the employers think that you need to be. You need to be the Alycia that is the Alycia.” Right, wrong, or indifferent. I’m almost six years into this.
Just the last couple years do I feel like it’s been the most authentic ever. It’s scary. Scary place to be in.
Mindy Henderson: It is scary. It’s very scary. I’ve gone through some iterations, I think, because you just don’t unless you are really unique in this way. I don’t think a person gets comfortable with the flipping of a switch, telling every story online, exposing every bit of who they are and saying what they really think about things.
I think the short answer is that it’s been a process. I had conversations with my family. I had to tell them, “I’m gonna be really honest in this book about some of what I’ve been through in my life,” and made sure that I had their buy-in.
I think I did have the luxury, if you can call it that, of doing a lot of it behind the scenes while I wrote the book. Because I could stop myself. I’d be writing a chapter, and I would be like, “Are you saying what you think people wanna hear right now? Or are you saying what you really believe and what you actually learned?” I would write, and then I would rewrite, and I would litmus test things. I do think that it took a while to get comfortable just seeing certain things on paper and knowing that other people were gonna see them, too, and be okay with it. But I think the really beautiful thing that I’ve learned is that storytelling is one of the most powerful ways that we communicate and relate to one another, and frankly, create progress in our world because I did publish my book.
When I did give speeches, I would talk to people afterward, and the way that people responded to me, almost immediately, was incredibly rewarding. I started to see very quickly that there was something here, and that this was exactly the approach that I needed to take if I was going to have any kind of effect or impact on the world around me.
Alycia Anderson: I love that. I think that’s a good lesson for all the speaker advocates that are out there, too. It’s something that I’m gonna start to put into practice, too, is the writing of it, and then checking yourself. Who are you serving right now? Is it you? Are you being authentic? Are you writing what people need to hear? What you think they wanna hear?
I think it’s so easy to fall into that, especially with just social media and consuming all this content that becomes overwhelming. At a certain point, you’re like, “It’s just too much. I’m confused now.”
Mindy Henderson: And even social media, we all live out these personas on social media, and I think that you get a little bit trained to say what you think is going to go over well, and be widely accepted, and things like that. Frankly, any person out there could tell the world what they wanna hear. I think that it’s the much harder thing to do to get real with yourself and get real with the people that you’re speaking to about what your experiences have been and why they should matter to anybody else who’s listening.
Alycia Anderson: Yeah. And even more important, maybe. Everybody else being number three, number one being you, the most important. Number two, like you said, when you were writing, you had to tell the people in your life like, “I’m writing about this.” I have those same experiences. There’s stories where I know that certain situations I would’ve been hidden a little bit, or there would’ve been some ableism that was going on that they didn’t realize, or something happened that really affected me through my whole life. There’s certain stories thatI’m cautious about because I don’t wanna hurt anybody. They weren’t malicious, but they’re lessons to learn.
Mindy Henderson: Absolutely, yeah. Pain is definitely one of the human conditions. There’s a lot of entanglements that we all have in our lives. I chose to really focus on myself.
Despite what you may think, I have not always made the best choices in my life for myself. I’ve made a few mistakes, and I knew that I was gonna talk about those things. And I wanted to be sure that the people around me were okay with me exposing those mistakes and things that I had done that maybe I wasn’t as proud of.
Alycia Anderson: Especially, not showing up for yourself.
Mindy Henderson: Yeah.
Alycia Anderson: I feel like disabled people live a life of trying to show up for other people to be invited in. And it’s not often that we go, “Okay, we’re gonna write this book, and I am focused on me. This is about me.” So I think it’s powerful.
Let’s talk about the book. So the book is called The Truth About Things That Suck. Tell me about it.
Mindy Henderson: One of the truths is actually the title of the book. I knew that I wanted to write a book about the adversity and how it shows up in our lives. Adversity is a universal truth. It’s something that we all experience in one way or another. And sometimes things just suck. I think that being able to say that is the first step almost, because we try to downplay things, and we make excuses for things, or we explain things away. And you know what? Sometimes it just sucks, and that’s okay, actually. I think that’s the second truth, is that it can be okay that something is really awful right now. I think one of my favorite truths to talk about from that book is that more than one thing can be true at the same time. You can be sitting in something really awful or really painful or bleak, but you can still have a roof over your head.
You can still have people at home that are waiting for you, that love you. There are so many things. It’s the whole count your blessings exercise. I think that was one of my absolute most favorite things that came about from writing that book. Yes, sometimes things are really hard, but at the same time, they can actually be okay, and you can still be thriving, and you can still be happy and all of that.
I didn’t want it to be, strictly, a disability book. That’s part of who I am, but it’s not all of who I am. I’ve experienced job loss and things like shame, and regret, and loneliness, and so many other things. Those are also things that while there are other people out there who may experience disability or illness, maybe that’s not their story. But they lost their job last year, or whatever the case may be. And so I structured the book so that each chapter is one of those little life journeys. There is a chapter on job loss, and there’s a chapter on disability and illness. I wanted it to be a book that anybody could pick up and find themselves somewhere in the book.
Alycia Anderson: I love that, and I definitely think you can. Where can we buy this book? Tell us, pitch it.
Mindy Henderson: I love that question, too. Anywhere you can find books. If they don’t have it, they can order it for you. But I know, today, you could get it on Amazon or Barnes & Noble. It’s available on Kindle. It’s an audiobook that I had the pleasure of narrating. My favorite compliment, actually, about the book. I speak in a distinctive way, and people have said to me that they feel like they’re in a room with me drinking a glass of wine, talking about life. I really hope that’s the experience that people get.
Alycia Anderson: We’re gonna leave the links to your website, how to buy your book, how to book you for speaking, how to work with you, how to support all the initiatives that you’re working on in the show notes. Did we miss anything that was major? I feel like we could talk for two hours. I think we’re just scratching the surface.
Mindy Henderson: Gosh. Most of the big rocks, I think you covered. I do a fair amount of speaking, and I’m always looking to hear from companies to help them solve their problems, particularly around areas where they feel like they’re at a disadvantage or they’ve got some kind of constraint that they’re working up against.
Because I think that I’ve one hundred percent seen in my own life that it’s when you’ve got constraints or you’ve got limitations that, again, the magic happens. And you can re-envision things and find ways to do things that you wouldn’t have otherwise thought of, if you weren’t tasked with that particular challenge.
Alycia Anderson: I love that. I think that’s powerful, and I think there’s a lot of challenges in corporations right now. So I think that’s a beautiful path of entry there. We’ll leave all of your information to book Mindy to speak, buy her book, have a whole speaking and book event. Yeah, there you go. Just thank you for all the work that you’re doing.
Mindy Henderson: Thank you.
Alycia Anderson: I’m so happy that our life paths have crossed.
Mindy Henderson: I am, too. I love watching your journey, and you do such amazing work in this world. As a member of the disability community, I appreciate you’re out there every day teaching people about ableism, and inclusion, and all of the things that matter so deeply.
Alycia Anderson: We’re in this together, sister.
Mindy Henderson: Yes, ma’am.
Alycia Anderson: Okay, so last question. What does pushing forward mean to you right now in this season of your life?
Mindy Henderson: I think the phrase that is coming to mind with this question is one that I’ve loved for a long time, and it’s “Do it scared.” I think that there’s a lot right now that’s hard, and I think one thing that’s served me really well in my life is to say yes, and then figure it out. I think that there’s a lot the world needs right now. It just needs good people out there who are afraid, but they’re not letting it stop them.
Alycia Anderson: Ah, do it scared.
Mindy Henderson: Yeah.
Alycia Anderson: That might be one of the best pushing forward moments we’ve had in the last 150 episodes, or whatever we have.
Mindy Henderson: That’s pressure.
Alycia Anderson: That’s inspiring me. I’ve got all these projects I’m about to release, and I’m scared, to be honest. That just gave me some motivation.
Mindy Henderson: I love that for you, actually.
Alycia Anderson: Mindy, thank you so much for your time. It was really good to see you.
Mindy Henderson: You as well. Thank you for having me.
Alycia Anderson: Yeah, and thank you to our community for another great episode, and coming in community with Mindy and I. This has been Pushing Forward with Alycia and Mindy, and that is literally how we both roll. We will see you next week.