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a number-one best-selling author, success and book coach, and speaker on a mission to help leaders use the power of writing to uncover their unique stories so they can scale their impact.

I'm Stacy Ennis,

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Episode 124 | Travelling as a wheelchair user and disability advocacy, with Heather C Markham

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I'm a number-one best-selling author, success and book coach, and speaker on a mission to help leaders use the power of writing to uncover their unique stories so they can scale their impact.

Hi, I'm Stacy

When you hear the word “equity,” most of us will think of gender, race, and ethnicity. But oftentimes, disabilities are left out of the conversation—and that needs to change.

That’s why I’m thrilled to welcome this week’s podcast guest, Heather Markham, a woman on a mission to show businesses how to make their space warm, welcoming, and accessible to the more than 1 billion persons with a disability. With her background in electronic warfare and assistive technologies, she has honed her engineering skills and an eye for otherwise unseen details. Heather has fifteen years of experience as a power wheelchair user, and she taught me so much in this episode! In it, we discuss:

  • Heather’s life-changing diagnosis of progressive muscular dystrophy at age 34
  • How she leaned into a life of adventure and focuses on what she can control
  • How she’s created a community around her and how listeners can build their own community
  • Challenges she faces while traveling as a power wheelchair user
  • How businesses can become more accessible, both in physical locations and online
  • Why she wrote her memoir and what her writing process was like

Heather is an inspiring woman who embodies her personal belief: the one thing she can absolutely control every single day is how she chooses to react to things. She expresses herself creatively through her memoir Rough Waters: From Surviving to Thriving with a Progressive Muscular Dystrophy and fine art photography.

This is an important, inspiring, and practical episode—don’t miss it!

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Transcripts for Episode 124

These transcripts were generated by robots, not writers.

Heather: I have a friend, Amy, and I was complaining about the fact that I needed so much help to get ready to go surfing. I can’t put on a wetsuit by myself. Like, I can’t even put on a bathing suit by myself. And she said, heather, astronauts, are they the most physically capable people on the I said, oh, undoubtedly that they are. And she said, even they don’t get dressed for a mission by themselves every day. Right now, Heather, for you, every day is a mission. So if you need help getting dressed every day, that’s okay. You’re just an astronaut.

Stacy: Welcome to Beyond Better, a podcast that explores a simple but profound idea. We all deserve to lives we love, and that includes our work lives, too. I’m your host, Stacy Ennis, an author, book coach, speaker, and longtime location independent entrepreneur living in Portugal with my family of four years ago, I was living in Idaho and dreaming of more for my life. And today I am living a life of my own design. Join me as I talk business, location, independence, writing, publishing and so much more, all focused on building a life that is beyond better. If you are an aspiring nonfiction author, I would love to help you write your book. I help authors, aspiring authors, just like you, go from idea to draft. I do this through consulting one one coaching and group programs.

Stacy: Welcome. I’m really excited to close out the first month of 2024 with a special interview. We are going to be talking about travel, which I know I talk about a lot on the show, but we’re actually going to specifically talk about accessibility with travel and meet an author who shares all about her journey traveling the world, and in fact, just got back from a really cool trip that I’m sure we’ll touch on. Heather C.

Stacy: Markham is our guest today. She believes in a world where businesses make physical accessibility and compliance to Americans with Disabilities act standards a priority. Her personal mission is to show businesses how to make their space warm, welcoming, and accessible to the more than 1 billion persons with a disability. She has 15 years of experience as a power wheelchair user, knowing that the one thing that she can absolutely control every single day is how she chooses to react to things. With her background in electronic warfare and assistive technologies. She has honed her engineering skills and an eye for otherwise unseen details. She expresses herself creatively through her memoir, rough waters from surviving to thriving with a progressive muscular dystrophy and fine art photography. Heather, I’m so excited to get to meet with you today and hear more about your story.

Heather: Hey, Stacy, thank you so much for having me. I appreciate it. I’m excited to be here.

Stacy: Yes, me too. As I told you before we hit record, when we heard from you, Rita on my team just fell in love with your story and knew we needed to bring you on and get to share it with our listeners and our viewers. So at 34, you received a life changing diagnosis that eventually led to where you are today as a wheelchair user. I’d love to hear a little bit about that diagnosis and your experience through that and how that experience led you into writing your book and the advocacy that you do today.

Heather: Sure. So mom called me her clumsy child. I was tripping and falling down all the time and didn’t seem to heal well or quickly, which was kind of a surprise. I injured my back when I was 22, and that set off a whole cascade of things in my body and likely triggered the muscular dystrophy. Even though it’s genetic, in my viewpoint, it had been lying dormant until then. And over the next twelve years, I had physicians tell me I was crazy and making things up, even though I knew in my own body that something was really wrong. My calf muscles were wasting away at different rates, and I was having problems walking and running. And finally, at 34, through a muscle biopsy, they came back and said, oh, you have a limb girdle, muscular dystrophy. And I said, what’s that?

Heather: And the doctor is like, well, it’s kind of a garbage can term because in 2002, they weren’t well defined. He said, we know it’s a muscle problem. We know it’s not ducen or als or any of the other ones that we actually know about. And it would be another four years before I learned that my body doesn’t make the. Well, the doctors say that my body doesn’t make the protein that repairs a muscle when it tears. And so all of the activity that I’d done as a kid, the running and the playing and the tennis playing and literally being a road runner, like all of those things which tear muscles so they get built up and stronger, were actually destroying my body. And so that was in 2008 that I got my first wheelchair.

Heather: So it wasn’t until after I was 40, I struggled, and I really insisted on staying walking as long as I could. I went through a cane and a whole bunch of other equipment before then. I just really fought because walking is the standard, right? It’s a benchmark. It’s a medical benchmark for how children are developing. And so we’re all programmed to think that walking is the only thing you should be doing. And so at 40, I finally caved in and got my first wheelchair. But I was also moving to Pittsburgh, and I couldn’t walk Pittsburgh with just a walker. I wasn’t strong enough. And so had I actually given in to a wheelchair and understood that it wasn’t defeat, but it was actually a smart choice to save my energy, I would have done it earlier.

Heather: I’m now 56 and have lost a lot of use of my shoulders. I don’t wave on Zoom camera, and so people think it’s really od because my waving looks like this.

Heather: Just weird and od. And so my face has gotten really animated where I used to talk with my hands a lot, and you’ll see little movements, and I just kind of pretend I’m having a dance party all the time. Works for me.

Stacy: I love your energy, Heather. I want to continue with the question of how did you pivot that into the work you do today? But I want to also piggyback before we get too far on not being believed in the medical system. And I think as a female in general, this is an experience that we have on a regular basis. I actually, just a few weeks ago, had a confrontation with a doctor when I was insisting that there was something that I knew that my child needed. And he literally, multiple times, over and over, said, are you a doctor? Like, to belittle me and put me in my place? That was the most aggressive experience that I’ve had with a doctor.

Stacy: But I’ve had many experiences over the years with my children where they want to assert themselves as though you couldn’t possibly know more than me. And that’s such a disempowering feeling. I’m sure that experience alone. Now we add on moving into the wheelchair and really learning that’s actually energy preservation. All of those experiences combined. I’m sure that you went through so much just growth and development and learning to empower yourself when the system wanted to disempower you. Talk to me a little bit about that, and then how that pivoted into, now you’re an author and an advocate. How did that journey unfold?

Heather: So what I firmly believe is that I am the person who knows my body the best. You are the person who knows your body the best. As the mother of your children, if they’re not yet able to articulate what’s going on with them, you can see changes in them, and you know them better than any physician who will spend 15 minutes, if you’re lucky, with them, once every six months or whatever. So I really feel that it’s important to stand your ground. And I would say to them, your medical training, just because we’re hearing hoofbeats and you’re not seeing horses. But it turns out that I’m a pink polka dotted, purple striped zebra with green ear tufts, but there are still hoof beats, people.

Heather: And my back injury pain went on is because I was struggling to stand upright, because my stomach muscles were getting weak from the muscular dystrophy, not just because my stomach muscles were weak. And so learning how to stand up for yourself, learning how to advocate for yourself, just naturally led into a journey of advocating for others. And I have to tell you that I never thought I would write a book that said how it feels to have a muscular dystrophy. That wasn’t the first book I wrote. I actually wrote stories about what was going on in my life, like my cats bringing in a mouse and weird, silly things that weren’t critical to my story. They were just pleasant stories.

Heather: But I was pushed by my developmental editor, who said, this is okay, but this isn’t a book that anyone’s really going to be engaged invested in. And so you need to dig deep and cut the junk out of here and really find out how to tell us what you were thinking and feeling. And so there were a lot of things that had to happen in there, including me having to talk to the guy that I dated that I wrote about in the book and ask him after a span of eight years, because that’s how long it had been since I talked to him and say, is it okay if I write about us? And he went from four sentences to two chapters. And so there was a lot of stuff that had to happen in there.

Heather: But it was an interesting process to write this memoir. A lot of therapy, doing it, a lot of pain and stuff. And at the same time, I was actually going through trauma therapy. I met a business life coach, and she said, when you let yourself be seen, it will be a beautiful thing, but I think you should go through trauma therapy so that you can do that. And I spent a year in therapy and was editing the book at the same time, which, I have to tell you, was probably not something I would overlap again, but the result is good.

Stacy: Yeah. I appreciate you sharing that, because I think that a lot of people don’t realize that a lot of people writing books are in therapy while they’re working on their books, or they have just completed therapy, or they may find that they need some touch up therapy during the process. With the work that I do and the clients that I work with, I’m sometimes asking this question, are you in a healed place or a healing place while you’re writing your book? For the work I do, I like to work with people who, I mean, healed is, like, loosely used. We’re never fully healed, but I like to work with people who have been through that process of healing. It doesn’t mean that it’s fully excavated or it won’t come up.

Stacy: But I appreciate you sharing that because especially if you’re writing something that does unearth or dig up some hard things, you have to be mindful of your emotional support needs. Which actually brings me to a question. It was like a perfect little pivot there on the people that you surround yourself with and your team. You call it your team. You said that it’s really important to find that team and have people that support you in times of change and adversity, but also to challenge you to do more. Can you talk a little bit about how this team has showed up in your life? How has that been a part of your journey and your story and showing up fully as you do today, being seen like you are today?

Heather: Sure. So the idea of team for me really originated in two places and stories that I tell in the book. One of them is as an adaptive surfer, because I’m a competitive, adaptive surfer, which means that I lay down, and my type of surfing means I lay down when I surf and I don’t paddle into waves. I have an actual team of people who push and catch, and when I fall off the board, they throw me back on the board. And so for me, immediately, that team are the people who I surround myself with, who will flip me up and make sure that I’ve got air when I’m surfing. Pretty important, I would say. And it’s a great metaphor, right?

Heather: Who are the people in your life who, no matter what is going on with them, will stop everything and rush to you to make sure that emotionally, you are upright and have air. And sometimes it’s not always that dramatic. I have a friend, Amy, and I was complaining about the fact that I needed so much help to get ready to go surfing. I can’t put on a wetsuit by myself. Like, I can’t even put on a bathing suit by myself. And she said, heather, astronauts. I said, dehydrated ice cream. I mean, what are we talking about here? And she said, are they the most physically capable people on the planet? And I said, undoubtedly that they are. And she said, even they don’t get dressed for a mission by themselves every day. Right? Now, Heather, for you, every day is a mission.

Heather: So if you need help getting dressed every day, that’s okay. You’re just an astronaut.

Stacy: Your friend is a freaking genius. That is an amazing quote.

Heather: Yeah, I will tell her that you said so. I know she’s a freaking genius, because were on the boardwalk in New Jersey and went into an ice cream shop, and she only got a waffle cone covered in chocolate and Jimmy’s. And I said, where’s the ice cream? She’s like, but we only get ice cream cones, so we can eat the cones. Why just not skip the ice cream altogether when all I want is the. So, yeah, Amy is a freaking genius.

Stacy: That’s awesome.

Heather: And people come and go from your teams, right? And it’s okay to let them go. Like, you can tell who your inner circle is, and people come and go from your inner circle. And I had someone in my life who had been in my inner circle, and she eventually said to me, your disability is inconvenient to me. And I was like, oh, I’m sorry that my disability is inconvenient to you, because I’m having a party over here. And so I realized, and what I needed to do is I needed to move her out of that inner circle. And she did that, and I honored her move, her choice, and I let her go because it’s important to let those people move out of your inner circle, because trying to keep them there isn’t going to be any helpful to you or to them.

Heather: It honors my boundaries by letting her go, and then I’m not fighting. And it honors her boundaries by letting her go. And so you can tell who’s in your inner circle and who’s in your close in team and who’s not. I have a picture that I routinely share when I’m publicly speaking that’s of an adaptive surfer on a wave, and he looks all by himself. And I said, you know, life may feel like this, but it’s really. And then I go to the next picture, but it’s really like this. And there are multiple people on that wave. There are guys on jet skis who are the water safety people. There are other people nearby. But watching, you can tell the layers of your team. You’re not alone on this journey. And then there are people way out in the background.

Heather: I’m like, and those people, they’re not your team. The far out people. And that’s okay. Not everyone that you encounter has to be part of your team.

Stacy: I love that mindset. I mean, that’s also something you can apply to business, to personal life. There’s so many applications. One of the things that I’m thinking about as I’m listening to you talk is that all the things that you do, writing a book, surfing, traveling, which we’re going to talk about in a second, it’s also impressive, standalone, but then you add in the fact that you’re a wheelchair user and there’s so many other layers and obstacles that you have to overcome even just to get to the place. Like you said, getting on the bathing suit and then the wetsuit, getting the support there. And it made me think about, I follow a couple of disability advocates on Instagram. We’ll be sure to, as well as include all of links to all your stuff. We’ll include them in the show notes.

Stacy: This little Miggy and disability reframed are a couple that I follow on Instagram. I really like their content. And one of the things that I’ve learned from following them is just the sheer number of obstacles that a wheelchair user faces while traveling. And even just the first one of checking your wheelchair with these airlines that break them all the time. You just got back from a twelve day trip to Madrid, to Barcelona, to Paris. You told me before we hit record that you rode. Know, some people listening maybe have never thought about this before. Can you share a little bit about what are some of those things that you have to consider when you go into these epic adventures around the world?

Heather: Sure. So I know up front that I’m going to pack heavy. So traveling my wheelchair doesn’t count as baggage. The suitcase that’s going to go overweight because it’s carrying other medical equipment doesn’t count against my baggage allowance. And it doesn’t matter that it’s heavy because it’s medical equipment. So when my fiance and I went, we each carried like a computer bag. So if you count those two, were carrying seven extra bags. We were only gone twelve days. I mean like, wow, two regular people. We’re going to call you Stacy. Like regular people. You could do it in like a carry on. Yeah. But that isn’t how my life rolls. Like a, I’m carrying a ton of luggage. I always ask to talk to whoever the ramp supervisor is for the airlines to tell them how my wheelchair gets turned.

Heather: Know where all the switches are. What you’re going to was actually, we flew american out of here, and I was transferring in Charlote to get on a plane to Madrid. And I had a woman with american look at me and say, we don’t allow that. And I’m like, I’m sorry. And she said, no, it’s against policy. And I said, really? Because at every other airport I’ve ever been at, someone from the ramp comes up and talks to me. And here’s why I want to do it. I said, look, I’m trying to protect my $95,000 power wheelchair, and I’m trying to protect you, so I don’t want my legs broken, and I don’t want you to have to pay to repair it. So it’s really just that simple. She didn’t budge, which really surprised me.

Heather: And when we got back at the end of our trip, so the people who are employed to move people on and off airplanes, on those little tiny, terrible aisle chairs, they’re actually employed by the airport. And when they came to get me off the british flight, she said to me, oh, your wheelchair is going to meet you down at customs. And I said, no, it’s not. And she said, oh, yeah, it is. The airlines are going to require it. And I said, no, they’re not. And the flight attendant sitting next to me said, now, look, her chair is marked return to door. You need to bring it here. And it’s because the ground crew couldn’t figure out how to get my wheelchair out of the cargo box that they had loaded it into.

Heather: Now, the air carrier Access act says that I am entitled to have my wheelchair brought to the aircraft door. It was an hour between the time that we landed and the time that I actually was put back on my power chair. And I spent most of that time one of those little terrible aisle chairs. And they tried to say, wouldn’t you be more comfortable, like, if we moved you off that into this other thing, and we’ll take you up into the terminal where it’s nice and warm. And I was like, no, what would make me comfortable is to not be picked up more than necessary, because I have to be picked up. And every time I’m lifted, there’s an injury that I’m going to get hurt. There’s a chance that I’m going to get really injured.

Heather: And I said, no, I’m not at all interested in being moved more than necessary. And I will sit here and wait, and someone’s like, you’re making their flight late. I said, no, they’re making their next flight late. This is an airline controlled situation, but I need to control my own physicality. So flying with a chair is horrifically scary because airlines are still breaking more than 10,000 wheelchairs a year.

Stacy: Wow.

Heather: More than 10,000 a year.

Stacy: That is a massive number. It’s absolutely insane.

Heather: It’s a massive number. They’re really proud of the fact that it’s less than 2%. I’m sorry, that’s still a lot of wheelchairs to be breaking. So it’s a matter of being able to communicate clearly. This is where we turn things off. And my fiance, I would get loaded on the airplane, and then my fiance would be off out of my sight, talking to people about my wheelchair. So if I were traveling independently, I have no idea how all of that would get handled. But it’s always scary. I mean, I often sit on the airplanes and cry initially just because I’m so worried about my chair. Like, did it get loaded? Someone will come and give me a thumbs up. Yes, it got loaded safely. Okay, good. So now I’m just going to hope that when I get to my next location, it’s still intact.

Heather: The way that I handed it off.

Stacy: It’s your mobility. I mean, I think that’s the thing that people. It’s an extension of your body. Listening to your story, it has me thinking about all the ways that we try to put people into one set standard box. And if they don’t fit in that box, whether it’s a physical disability, an intellectual disability, or any other number of things that neurodivergent, all kinds of different things that put people outside of the box. It could be race and ethnicity. And when the system does not work to support outside of this very standard thing, we want to make that person the problem, rather than go to the system and say, why doesn’t our system fully value the worth of every human and put human dignity at the base of every decision that we make.

Heather: Yeah, we’re still a long way from that. Unfortunately, what I did find traveling through Europe was a very different mindset. I was in a line and someone moved, so I could actually cut in line in front of him to go to a museum or wherever were. And I said after you. And he said to me, and I don’t know if were in Spain or he. Whatever he said to me, I didn’t understand because it wasn’t English. And I said, I’m sorry, I didn’t understand you. And he said to me, you have priority. And I was, oh, wow. Thank you. And he’s like, but, of course you have priority. And so I ran into a much different mindset than here in the states. Here in the states, I’m considered in the way, and I’m the problem.

Heather: And it’s certainly not you have priority because, you know, you have these other challenges. So, you know, there’s a. I want to. Deference isn’t exactly the word that I wanted to use, but it was nice to be treated like I wasn’t know and that I was the problem, because that certainly wasn’t the treatment that I received in Madrid and Barcelona and Paris. Everyone was very kind. And I have this weird obsession with bathrooms, which makes sense, considering that my mobility is very limited and space is a huge consideration, and a standard airline bathroom, I can’t get my wheelchair into, even if I could leave my wheelchair on the plane with me. The bathroom on the first train going from Barcelona, from Madrid to Barcelona was so big that I could pull in, shut the door, and spin my wheelchair in. I don’t.

Stacy: That’s impressive.

Heather: It was huge.

Stacy: I’ve experienced those types on the trains I’ve been on, but that sounds amazing.

Heather: It was huge. I was like, wow. And I could have an attendant in there with me without tripping over each other. It was actually on a Renfei train, so that was really quite awesome.

Stacy: That is cool.

Heather: There are a million things to consider when traveling, and hotel setups are not great. And in Madrid, someone said to me, the woman who checked us in said, you should have called, because. Didn’t you call? And I was like, okay. I made sure that the room was set up, and it was, like, 95% good, and it was a brand new remodel. What didn’t fit was my wheelchair was too long for the elevator. Stacy, I know all of the questions to ask about accessibility, but nowhere on my checklist is, what are the dimensions of your elevator?

Stacy: Right.

Heather: Not on my checklist. Anywhere. It is now.

Stacy: Yeah. Well, it’s also, like, back to that earlier conversation. Why should that burden be on you? I feel like there should be regulations that support this functionality without you needing to go to all of this effort. This actually brings me into my next question. It’s all the segues today. It’s perfect. We have a lot of people that are business owners. Some are solopreneurs, some are running. They’re leaders and companies. How do these listeners or viewers, how should they be thinking about accessibility? How could this be something that becomes like, hopefully this podcast episode will bring a new layer of awareness to them, to their life, to their work, that will hopefully encourage them to be more proactive in how they think about accessibility. I’d like you to just offer your thoughts on that for people that are listening.

Stacy: And they’re like, either I hadn’t thought about it, or maybe I had a light experience one time, but it kind of got pushed out of my consciousness. I don’t think that this is a question. I mean, we talk about accessibility on our team and content we create. It’s important. What should people know about accessibility in business? Both, I think there’s such a broad application here, but maybe you can speak from your personal experience.

Heather: Sure. There are 8 million things that I could launch into. Let me start with, and I saw this term, I found it with one of the disability advocates that I follow on instagram also. But the statement was that people with disabilities are the absent majority when it comes to engaging with businesses because people will say, oh, I’ve never had a problem with anyone who uses a wheelchair accessing my bathroom. That was the case when were in this little barbecue place in Mississippi. She said, we’ve never had anyone complain. And I said, that’s because as a wheelchair user, I can look at the two bathroom doors to your bathrooms and I can tell that the women’s bathroom door is 24 inches wide and I can’t even get my wheelchair through the door, so I’m not even going to try.

Heather: And the men’s room, the door was wide enough and it was so small that there was no way to transfer. And I was like, no one’s even going to try because we have enough experience as wheelchair users to eyeball it and already know up front. So we have to know those things. So as the absent majority, oftentimes business owners don’t see us because we can’t get in the door. Literally can’t get in the door. I shouldn’t have to call businesses and say, how many steps are there into your door? Is there a threshold step? I shouldn’t have to call a restaurant and say, do you have an accessible bathroom stall? How wide is the doorway? I just googled on the Internet, like five hotel tips for wheelchair travelers and chat. GPT literally came back with every answer said, call the hotel.

Heather: One of the challenges with hotels is that the people on the desk aren’t trained between knowing the difference between why someone would want a roll in shower versus why they would want a bathtub. And I want a roll in shower because it always gives me more turning radius and I have difficulty transferring around a bathtub. But even if you are a CPA and you have a business out of your home where clients come to your home, you’re required to have a bathroom that is AdA accessible, even if it’s in your own home. And so I think there are a lot of rules that people are missing. One of the biggest challenges is that the Department of Justice is the enforcement agency and they’re busy doing other know business owners.

Heather: If they could enforce the please don’t park on the stripes in the handicapped parking spaces if they could get spaces labeled appropriately. I see all these spaces that say van accessible, but they’re not because there are actually rules. There just needs to be a lot more awareness and a lot more advocacy from the business owner’s side. I think that would make a huge difference because the disability advocates we can get noisy all you like, but until someone decides that our voice matters, I’m trying to get my voice to matter and my business making waves for good is about helping business owners choose to let the disabled voices matter. And there are lots of ways to go about that.

Heather: But I think being aware of the laws and deciding that they’re important, deciding that my business is important because I’m not quite a boomer, but the boomers are the fastest aging group with a disability and they still have the most spending power.

Stacy: There is financial incentive too, which I feel like a lot of times people need that. Unfortunately, that shouldn’t be the impetus, but it often is. I want to come back to your business and ask a little bit more about the specifics of how you support people, but to your points on that CPA’s house or some of those other pieces that people maybe aren’t thinking about. One of the people that I mentioned, this little miggy that I follow on know you mentioned that you are obsessed with bathrooms. She’s obsessed with parking spots and playgrounds. And I’ve really now seen playgrounds in a totally new light. Now let me just say we have terrible playgrounds.

Stacy: Anyway, in our part of the Algarve where we live, they’re quite run down and not very nice, but it was interesting because she posted a picture of what she said was the worst playground that was going to come down, and they’re building this whole new accessible playground. And funny enough, the best playground that we have in our area looked just like her worst playground that her kid could not play on. And it really got me thinking about all of the different ways that we communicate to that earlier conversation of valuing all people as equally worthy of accessibility in public spaces, private spaces. I mean, there’s so many of those things. I was just even thinking about my house. We have a step into our yard. We have three steps into our front door that’s not accessible.

Stacy: I had not thought about that until just this conversation. So those types of things, Heather, I just feel like hopefully somebody here now is going, oh, and that. So when you work with business owners through your business, can you talk me through. Maybe there’s a specific story you could tell us, or maybe you could talk us through kind of your approach and how you support businesses in becoming more accessible.

Heather: Sure. So I can do a video walkthrough of a space. I am very used to seeing things, say, I’ve kind of developed a sense of how wide doorways are. And I’m slightly frustrated, or a lot frustrated, by the fact that businesses will say to me, oh, we’re grandfathered in through the ADA. The Ada was written in 1990, so we’re 44 years later, not quite sure. You’ve made no changes structurally at all. But I was just at the Moulin Rouge in Paris. That building is ancient. They managed to put in an invisible elevator that got built into the stairs inside. And so I’m thinking, if the Moulin Rouge can do it, and I’m going to get that video posted so that everyone can see it, because it was quite remarkable. The way I support businesses is that I want to bring awareness to.

Heather: You can buy a portable ramp, it’s perfectly okay to deploy it when people ask for it. You just have to have a way for them to be able to access it. Having restaurant customers go through the kitchen is not acceptable when you’re making design decisions. I was at a place in Dallas, at a really lovely little restaurant, and I wanted to go check their bathroom. And the door didn’t open all the way wide enough for me to actually get my wheelchair through and to clear the door as I turned right to go around it, because they had set it up so that the sink was behind the door and people washing their hands were getting whacked by the door. So they put a doorstop in the floor to stop the swing, which is great to protect the people washing their hands.

Heather: But it also completely made that bathroom inaccessible. And I asked my fiance to go in and he said, this is the biggest accessible stall I’ve ever seen. This is amazingly set up. Like, the grab bars are great and the toilet paper holder is great. He said, it’s beautiful. I said, isn’t it a shame I can’t get there? So there are these design decisions that people are making which they think are smart for everyone, but they’re just not. If you’re a hotel owner, you need to be posting the floor plan that’s been lost since 2013. Still not happening. If you have a website, it needs to be able to be read by a screen reader.

Heather: If you have a business at all, if you post and you expect people to come through the door, if you were to post on your website how your accessibility is, we have zero entry, zero step entry, and the doors are x wide. That would go a long way to me knowing that I could get in the business without having to drive over there and park and get there and go, oh, look, they said it was good, but there’s a step. Now, if I’m a manual wheelchair user, I might be able to pop a wheelie and hop that step, because I have very strong friends who push manual chairs and they can hop a curb, which is seven inches. Actually, my power wheelchair has a clearance of three quarters of an inch.

Heather: And in Paris, we got to a restaurant and there was a step and no ramp, and the owner is like, we’ll just pick you up. And I said, me and my chair combined weigh 300 kilos. This is a big, heavy power chair. And obviously I’m a dainty flower of 100 pounds. And they’re like, no, we’re going to do this. And it took six guys and they insisted and they picked up my power chair with me on it. Now, I don’t like people doing that because I’m afraid they’re going to get hurt. I’m always worried about other people getting hurt. So if you have a lift in your business, like we found at the Ritz Carlton in Santa Monica, great. Make sure it works. Get it serviced. Get a lift that has a maximum weight of 750 pounds, not these little 500 pound lifts.

Heather: Do more, do more than meets just the codes and the standards. Make things usable. I’ve been in restaurants where I’ve gone into the bathroom and couldn’t reach the soap because somebody decided that up high and against the mirror was the right place for it. When you do those things, when you make those decisions as a business owner, you tell me my business isn’t valuable, and that’s certainly not what you’re trying to communicate.

Stacy: Those are also great tips. Heather. I’m sure that anybody, especially who has a physical space, hopefully they’ll now go and look at that space and really think about that accessibility. Before we close out today, I do want to have a chance to talk about your memoir.

Heather: Sure.

Stacy: You wrote a memoir about your experiences, and I would love to hear a little bit about your writing process with that. Why did you decide to write that book? What did you learn during the writing process? We already talked about the emotional journey of that, but what did you learn through that journey? Because authorhood is such a journey in and of itself. And how did you feel at the end? So kind of talk us through that decision, that experience, and that final moment, holding that book in your hand.

Heather: So the process was difficult, but important to have outside voices. Having a good editor really made all the difference. Cathartic. The book was cathartic as a memoir, but it was also emotionally challenging. I write the way I speak, and I’ve been told that my language is too high, my sense of humor is too high. I just figured I hadn’t found the right audience yet. One of the challenges that I actually ran into was with part of my editing team because of the language that I’ve chosen, which is Matthew Sanford’s, which is that I sit on my wheelchair, not in my wheelchair. So part of working my book was to help change the language around disability. I wanted to share the fact that my world is very big. I have a lot of experiences. I’ve gotten to experience a lot of things.

Heather: And when I was first diagnosed, or even when I was early symptomatic, I didn’t know if there was hope. And so it was important for me to share the hope. It was important for me to share my story for people who have a family member going through something, because just because I didn’t communicate it to you early didn’t mean it wasn’t happening again. And the medical community, when I finished send off the final draft, before it ever went to press, my first thought was, oh, my God, I cannot believe I told all those stories. I think I’m going to puke everywhere, because it’s just that, wow, I was really raw and vulnerable in the book.

Heather: There’s a picture of me after my mastectomy when I only had one breast, and I was going flat on the other side, and my team was like, are you sure you want to include that picture? I’m like, look, I talked about breast cancer. I talked about the emotional trauma of going flat only one side. The picture needs to be there. When the book was all said and done, it was, wow, it’s really here. I’m so glad it’s really here. And I hope people love it. I hope people connect with it, even if they don’t love all the stories in it. My dad actually said, I don’t think I’m going to read it because I don’t want to be sad. And there are some sad parts. And I understand that there’s stuff in that book he didn’t necessarily know about because he’s my dad.

Stacy: No matter what our age, there are certain things we do not want our parents to know. And I know my mom listens to this podcast, so there’s nothing in my life.

Heather: Everything’s. No, of course not. So I’m glad I did it. I’m glad it’s the book that it is. I’m glad I got the help that I did. I think had I come at it more healed instead of in the process of healing, it also would be a very good book. So I don’t know that I would recommend doing going through trauma therapy and trying to write a memoir at the same time. But I’m very happy with what it is and how it’s out in the world.

Stacy: Thank you for sharing that, Heather. And for listeners of this podcast, I have my clients on a lot. I didn’t get to work with Heather on her book, but I really appreciate you sharing the team around you in that support that you had. Because I think for anybody at any stage of the process, organizing that team, bringing it full circle to our earlier conversation is super important. Heather, where can our listeners, our viewers learn more about you, follow your work, and if they’re also inspired to make changes in their business, how would they get in touch with you about that?

Heather: Thank you. I’m going to circle back real quick and tell you that Karen from girl Friday, who I know was one of your guests, she was actually the person who greenlit my project to be worked on by Girl Friday.

Stacy: That’s so great. Yeah, Karen’s a wonderful colleague of. So that’s so fun. What a great connection.

Heather: And they were the ones who actually decided to put my own photograph cheeky waterslide on the COVID of the book. And so super fun team to work with all the ladies at Girl Friday. And my book wouldn’t be what it is without. So, yeah, they were really excellent. Okay, so how to get in touch with me? So I’m on Instagram. I’m in two places on Instagram. My business is making waves for good. And it’s on Instagram and YouTube, I think it’s on YouTube. I’m also there with my personal account. Heather C. Markham, I’m on LinkedIn. Heather C. Markham, on LinkedIn. I’m on Facebook with making waves for good and Heather C. Markham, author, I’ve got a Facebook page. My dad’s like, you, never reply to my emails.

Heather: I’m like, dad, I’m running five email accounts on three websites and instagrams for that and my photography. So I’m kind of really challenged for dad by keeping up with everything. But I would love to work with any businesses, event planners, hotels, travel. You know, the world is big and wide open, and people with disabilities deserve to get to see it, too.

Stacy: Heather, your book is called Rough Waters from surviving to thriving with a progressive muscular dystrophy. We’ll be sure to link to your website, all your socials, all the things in the show notes. Thank you for your time and energy and for answering my questions that I’m sure are the same questions you get asked all the time, but you did it with such patience and generosity. I really appreciate your time today.

Heather: Thank you, Stacy. And by the way, they weren’t the same questions I get asked all the time. I got to talk about new stuff, which always is fun. I appreciate your time. I appreciate you working at this time with the huge time difference between us. And so it’s just been lovely, and I hope we get to work together again.

Stacy: Thank you, Heather. I appreciate you. And to you, the listener or viewer, if you’re with us on YouTube, thanks for your time with us today. I hope that this was insightful. I hope it’s given you something to think about. I know I’m leaving this conversation with lots of things that are spinning around in my brain on ways that we can strive to be more successful in my business and actually in how I function in the world. Thank you as always to Rita Dominguez for producing this fine podcast and to Catherine Fishman for project support. And I will be back with you before you know it.



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