Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
148. Creating a More Accessible World with Heather C. Markham
164 Plays1 year ago
How can we move forward after receiving a difficult diagnosis?
This week's guest is Heather C. Markham, author of the new book “Rough Waters: From Surviving to Thriving with a Progressive Muscular Dystrophy.” Heather is also a competitive Para Surfer, winner of Ms. Wheelchair Kentucky, an engineer, educator and wearer of many many hats—and her story is truly inspiring. After being diagnosed with a progressive muscular dystrophy at age 34, Heather took on new adventures and found new ways to create a joy-filled life.
In our conversation, we talk about how Heather’s diagnosis impacted her own identity, tips for maintaining resilience in difficult times, the challenges of traveling with a disability, and so much more. We also talk about adaptive technology and how we can create a more accessible and equitable world for all.
If you enjoy this episode, please feel free to rate and review the podcast on whatever app you’re listening on, and share with a friend!
CONNECT WITH HEATHER
Websites: makingwavesforgood.com, heathercmarkham.com and justforthelove.com
Instagram: https://www.instagram.com/heathercmarkham/
Book: Rough Waters
CONNECT WITH THE SHOW
Website: WellnessAndWanderlust.net
Instagram: www.instagram.com/wellnessandwanderlustblog
Facebook: www.facebook.com/wellnessandwanderlustblog
Twitter: www.twitter.com/moses_says
Recommended
Transcript
Introduction to Wellness and Wanderlust Podcast
00:00:03
Speaker
Welcome to the wellness and wanderlust podcast. We're here to demystify wellness and help you add a little adventure to your life. Tune in for a new episode every week, where we'll hear from incredible guests and talk about ways to be happier and healthier in our new normal. I'm your host, Valerie Moses. Let's get started.
00:00:23
Speaker
Hello and welcome to the wellness and wanderlust podcast. I am thrilled to have you join me for another amazing week and a fabulous guest that you are going to love. Now, if you're new here, I want to welcome you to the show. I'm so glad you found us. And if you're a long time listener, thank you for tuning in and being a part of this community. I'm truly grateful for each and every one of
Meet Heather C. Markham: Author and Parasurfer
00:00:44
Speaker
you.
00:00:44
Speaker
This week on the show, we are chatting with Heather C. Markham, author of the new book, Rough Waters, from surviving to thriving with a progressive muscular dystrophy. Heather is also a competitive parasurfer, winner of Miss Wheelchair Kentucky, an educator, engineer, and wearer of many hats. And her story is truly inspiring.
00:01:03
Speaker
After being diagnosed with a progressive muscular dystrophy at age 34, Heather took on new adventures and found new ways to create a joy-filled life.
Finding Resilience and Joy: Heather's Journey
00:01:11
Speaker
In our conversation, we talk about how Heather's diagnosis impacted her own identity, tips for maintaining resilience in difficult times, the challenges of traveling with a disability, and so much more.
00:01:22
Speaker
We also talk about adaptive technology and how we can create a more accessible and equitable world for all. We get into so many important topics in this one, so I'm going to let Heather fill you in more. So enough from me. Let's hear from Heather C. Markham. Heather, thank you so much for joining us at Wellness and Wonderlust.
00:01:41
Speaker
Oh, you're welcome, Valerie. I really appreciate your asking me to be here. Well, I'm really excited to have you on. I have been reading your memoir and it's great to hear your voice over our interview today. I've been reading in your voice, but now we get to really chat. So I'm really excited for our conversation. Why don't you start out by just telling our listeners a little bit about you? Sure. Thank you. So
00:02:06
Speaker
It's kind of funny. I'm one of those multi-hyphenate people. I have training as an engineer, an educator, as an extracurricular stuff. I've been a belly dancer, a competitive parasurfer, a golfer. In my early years, I was a violinist and a guitar player. I worked in electronic warfare. I've been a baker. I've been a janitor and assistive technology specialist.
00:02:36
Speaker
And now I'm an author, international award winner, photographer and public speaker. Amazing. That's absolutely amazing. And you mentioned you're an author and a public speaker and talk to me a little bit about what you wrote about what you speak on.
00:02:52
Speaker
So I wrote a memoir. It's called Rough Waters from Surviving to Thriving with a Progressive Muscular Dystrophy. I had a lot of friends over the years say, you know, you really ought to just tell your story. And I was like, nobody wants to read that. And they're like, no, really, people need to understand your point of view and what it was like. So I wrote it all down. And the challenge of writing a memoir is what is it that you're willing to tell people?
00:03:21
Speaker
Turns out I'm willing to tell people a lot. And the bigger part was the feelings. Like really feeling the feelings. Because what is important to communicate are not just the stories of what was happening to me, but what I was feeling. My friends and family didn't know what was happening with me.
00:03:43
Speaker
And the medical community was all like, sure, you need this piece of technology. And I'm like, yuck. I don't want that piece of technology like that. It's going to make me feel bad about myself. And I don't want to use a wheelchair. I want to keep walking, even though that was terrible and hard. And so I want to be able to share and create some understanding.
00:04:03
Speaker
of what it's like to live with a progressive neuromuscular disease so that people who are earlier in their own journey with the same kind of thing can understand that there's hope and to see what I've gone through in my friends and family to understand what that's like and to help the medical community have more empathy. So what I speak on is I believe that we decide who we are before anyone else does.
00:04:31
Speaker
I've started the We Decide movement and it was brought to my attention, much to my own chagrin, that my disability is my credibility. It's important to be able to find your voice and decide who you are, people with disabilities of any sort or any difference than what's viewed as the norm
00:04:54
Speaker
are often labeled and they're labeled by other people. But it's really important that you as the person get to decide who you are and not be burdened with someone else's view of you. It's important and that's why I have called this the We Decide Movement. You decide who you are. I think that's such an important message. Thank you.
00:05:15
Speaker
It's something that we so often, we let society kind of dictate who we are, what our identity is, and really let that shape us. And it is so important for us to take that step back and really think about, well, how do I identify? Who am I?
00:05:32
Speaker
Right. Yeah. Well, I think the work you do is so impactful. And as I mentioned, I've really loved reading your book. I think that it is so important that you share those feelings in there because somebody, whether they are going through a progressive disease like muscular dystrophy or maybe looking for a diagnosis in some other area for something that they're not really sure what's going on, but they know that there's something.
00:05:57
Speaker
or anyone who has felt misunderstood by the medical community. I think that there are some amazing medical professionals out there. We've had plenty on the show, but I think there are also, there is a lot of, you know, a lack of empathy sometimes and a lack of understanding for the person. I think we're like looked at as symptoms or what, you know, a slot maybe in a calendar and to really, I think that for those who are going through it or who have gone through it, this is such a great way to
00:06:25
Speaker
really feel seen and understood. Thank you. Yes, my grandfather was a doctor. And so when I was struggling and I had some very, very good doctors and I had some terrible doctors, but let me focus on the really good doctors. Some of them got it right and some of them got it wrong, but not because they weren't trying. They were doing the very best that they could. And my grandfather would say to me, we're all just practicing.
00:06:52
Speaker
at medicine. No one's really gotten it right yet. And what he meant was remember that we're people too. Remember that we don't come at you thinking harm necessarily, especially the really, really good doctors.
00:07:08
Speaker
They listen. I was recently going back through medical records, trying to find things. And there were in the notes that said spent 45 minutes with patients. 45 minutes is a really long time to have a conversation with anybody, but to have a doctor who would spend 45 minutes with you, that's an eternity in the medical world. And so there are some really great doctors that I've run into and they've helped a lot. They listen.
00:07:34
Speaker
There are stories in the book even about not progressive things. I had breast cancer and that was hard. And after my mastectomy, my best girlfriend and I were talking and she said, how do you feel? And it wasn't a question of how do you feel medically because I was on painkillers, right? I didn't hurt, been hurt. But what I said was I feel maimed because my
00:08:00
Speaker
whole, my physicality had changed so drastically. And sometimes emotionally, we feel maimed by anything. But in this case, you know, it was very, very severe. I had a trauma. And it's important to recognize those feelings and really sit in those feelings so that you can learn how to work through them.
00:08:19
Speaker
Yeah. And what a great friend too. And I think there's such a power in just simply asking someone, how do you feel? I don't think we ask each other that enough. And I mean, certainly from a medical perspective, of course, they want to know, make sure that
00:08:35
Speaker
you're getting the right care. But at the same time, I mean, there is such an emotional factor to something like that, or really to anything that has to do with our health. And for our friends to step back and just ask us that, I mean, that goes such a long way sometimes. It really, really did. And we have to get comfortable answering the question.
00:08:56
Speaker
really answering the question and not, oh, I'm fine. Yeah, because because I wasn't fine. It wasn't fine. And I had to trust her to really. So I trusted her because I knew she wanted the real answer. I knew that she really wanted to know how I was feeling in that moment so that she could sit with me in it and help me through it. And if I had said, oh, I'm fine, then we would have gone on to the next thing.
00:09:25
Speaker
but no courage on her part to ask the question, and honestly, courage on my part to really sit in and say, I don't feel okay. I'm not gonna tell you I'm fine, because I'm not fine, but I'm gonna tell you how I really, really feel and trust that you're gonna be able to handle that information. Yeah, and for her to hold that space, I mean, and for you to create, you know, I think that that strengthens the friendship on both ends.
00:09:52
Speaker
Absolutely. Yeah. And I know that the relationships in your life, I mean, they really have played such an important role throughout the book. You know, I've noticed there are some amazing people that have stepped up in the front because I think so often we think that when it comes to life's challenges that maybe no one is going to help us out if we need, we can do it ourselves, even when we can't. And
00:10:16
Speaker
You have a great support network, but I'd love to know for you, you do get into quite a bit in the book of just many different paths that life took. But first and foremost, just talking a little bit about that diagnosis of muscular dystrophy and the winding path to get there.
00:10:33
Speaker
Sure. It was 12 years between the first symptom onset and diagnosis. And 12 years is a really long time. It was misunderstood. I was originally injured at work. And so I was only followed by doctors who thought they were treating my work and workers compensation related injury.
00:10:52
Speaker
So there wasn't a lot of interest in pursuing other things to look at other things. And along the way, I had a doctor say, okay, I see that there's others other thing going on with you, but it's not related to your injury. So I can't help you. So that was kind of challenging. And it took a time of being uninsured and waiting to get insurance until I got to go see a doctor who said, Oh, yeah, yeah, there's something really wrong.
00:11:18
Speaker
with you like i see it and i started crying and i said you believe me and he said it's not a belief or not believe it's i can see it i see it in your walk because i was just barely able to walk it was had a cane i was slow it looked like a broken doll and he said but i don't think it's orthopedic i think it's neuromuscular and he sent me off to a neurologist who eventually helped me get an answer
00:11:45
Speaker
I think that there's probably so much mixed emotion with that because on the one hand, you're getting information on something you have wanted to know what's going on. At the same time, it's a difficult diagnosis. Talk me through what that was like for you and some of the changes that took place in that time.
00:12:03
Speaker
Wow. When I finally got a diagnosis, the physician said, you have a limb girdle muscular dystrophy. Now, please understand this is 2002. The internet is pretty young. And muscular dystrophy as a classification is in the rare disease family. But it encompasses ALS,
00:12:24
Speaker
It encompasses Duchenne muscular dystrophy, Becker, which is the adult onset version. And then this whole group called limb girdle muscular dystrophy. And he said in 2002, he said, it's a garbage can term. We don't really know what else to call it. It's not one of the things that we know and it'll, it's slow progressing and it'll keep being slow progressing. Like I don't even.
00:12:47
Speaker
understand what that means. And then the nice little gal from the Muscular Distribute Association brought me a brochure. And it was six pages long and it had color pictures of what to expect and what muscle groups would be affected. And it's going to become difficult to brush your hair and you'll need a wheelchair eventually. And I was like, at this point, I was 34 years old. And I was like,
00:13:12
Speaker
everything that i know thought about my life was gone what is this mean i'm gonna need a wheelchair i never seen a power wheelchair used by anybody i knew and i thought the need for a wheelchair because i thought i would need twenty four seven care i knew i couldn't push one.
00:13:29
Speaker
I knew I couldn't get out of one the way I knew how to stand up. And what did it mean that I couldn't brush my hair? Well, let me help you understand. So if you're sitting and you just rest your arms gently on your thighs like you would, palms up, I'm unable to lift my arms off of my legs against gravity in this position. Unable to move at all.
00:13:53
Speaker
my arms against gravity in this position. So it's not that it's going to become difficult to brush your hair. It means that everything that requires your arms is now going to take a new way to do it until all of the muscles become so weak that you can't do anything. And so I'm now 21 years post-diagnosis. Is that even right? Yes. 21 years post-diagnosis. I had to go do the math on that one.
00:14:19
Speaker
I use a long handled hairbrush to brush my hair but i have to pull up to the sink and put my elbows on the top of the sink and bend my head forward in order to use a two foot long hairbrush to brush the back of my hair no one explains that to you when they hand you a brochure that says it's gonna become difficult to brush your hair yeah.
00:14:39
Speaker
Yeah. Or even providing that information of like, Hey, you're going to need to adapt to X, Y, and Z. And I think what day to day life looks like.
00:14:50
Speaker
And the funny thing is, at 34 I don't think I was, and immediately post, immediately when I got my diagnosis, I don't think I was emotionally ready to comprehend what that was going to feel or look like. This path is hard and it's scary, but I don't know that having
00:15:11
Speaker
a clear vision of what the path would look like would have helped me. I think I would have become more afraid. Although it would have been useful if someone had said, essentially taken my hand and said, I've walked this path and all of the things that you're thinking of, how scary they are. Yeah, they're kind of scary, but let me take your hand and show you that it's not as bad as you think it's going to be. And that's what I want my book to be for someone new with a new diagnosis.
00:15:40
Speaker
yes, you think this is terrifying, but let me take your hand and show you because I've already walked this path, rolled this path. It's not as bad as you think it's going to be. And I love that about your book. I think that the way that you tell your story, I mean, first of all, just reading through, you
00:15:57
Speaker
As a reader, you do feel like you're there. I think you do an amazing job of really putting us in the moment and sharing those feelings with us so that as readers, I think we can really have a clearer picture of where you were at at those times. And I think for anybody going through it, it's got to be comforting to know
00:16:17
Speaker
here is this person who was in the same situation or a similar situation to what I am currently going through and look at how this person is thriving and look at how they've been able to make some changes and you know, yeah, and be that I guess be that guide and make it less scary because I mean, I don't think anyone can diminish
00:16:42
Speaker
how terrifying a diagnosis can be and how overwhelming I'm sure too to just think about how things are gonna change for a person. But yeah, to know that there's someone who has walked the path before, who's experienced similar or even the same depending on maybe what they're going through, I think that does make it a little less scary. I was talking to a friend today and she said something which surprised me and enlightened me.
Finding Voice and Identity: The We Decide Movement
00:17:10
Speaker
I've known her for
00:17:11
Speaker
15 years. And she said, you present as so strong and so capable that you don't give us permission to offer you help. Wow. Yeah, that was my reaction was like, wow, I don't give you permission to offer me help. And so it was
00:17:34
Speaker
not a criticism on her part, right? It was a really a statement of love. She said, we would have helped you in any situation. We will help you in any and we want to help you. You just have to give us permission to do so.
00:17:51
Speaker
And that's going to be a thing that really informs my future, right? As I move through my future to say, okay, I just need to get more vulnerable. I need to get more open to looking like I will accept help. Yeah. How do we do that?
00:18:09
Speaker
A, I'm not sure, and B, since being raised in a military family has trained me to think quickly and
00:18:24
Speaker
problem-identify and problem-solve, I'm going to say, B, we do it by trusting people. But we know who we can trust. You know who you can trust. And you say, OK, I trust you, and guess what? I need help.
00:18:41
Speaker
And to get really super vulnerable, my friend had just helped me transfer from the toilet back onto my wheelchair. And she had said, are you good? And I'm like, yes. And she's like, are you really? And I said, oh, I am in a hotel room. And this isn't my current setup. This isn't my strong setup like home. So yeah, I really do need help. And she said, I'm really glad you asked.
00:19:06
Speaker
Yeah, because I think as loved ones too, I mean, how often do you, whatever it may be with someone in your life, if they're going through whatever kind of challenge it might be, whether it's a physical challenge, emotional, something in their career, in their life,
00:19:25
Speaker
if there was something you can do to help and it's somebody you care about, of course you want to. And I think, you know, there's the fear as that loved one of, I don't want to smother them too much with, are you okay? Are you okay? And you want to give people the space to move through life the way that, and not to assume that people are struggling when they're doing fine. So sometimes I think, yeah, when we ask for help, we give them that permission because they
00:19:55
Speaker
It's not comfortable to also say, are you okay? Are you okay? And frustrate the person too, or what have you. But yeah, but you want to help when you can.
00:20:07
Speaker
My fiancé and I have this agreement about things, which is he watches me struggle a lot because I've asked him to let me struggle. But I have what I call the three try rule. So I'm going to try something. And after the end of the third try, if I'm still try if I'm still working it out.
00:20:27
Speaker
I'm just gonna ask him to do it. Or he can step in. But I really don't want him to step in earlier than that. Like, because I want to still do things for myself. I want to still try anything like, okay, we're in New Orleans, we went to Cafe Du Monde, and there were beignets. And he's like, you're gonna have to pick up that beignet and just live with getting powdered sugar all over yourself. I'm like, no,
00:20:53
Speaker
I'm not doing that. I'm either going to attack this thing with a spoon or I'm going to figure something else out because I knew in my own strength that the minute I picked that up, I was going to dump that powdered sugar all over my blue dress and I was just not having that. And so I said, okay, let's just pretend I've tried three times already. And we're just going to pretend that we're that really sick and really cute couple. And will you just feed me?
00:21:23
Speaker
He said, I would love to feed you beignets at Cafe du Mont. So that's what we did. And it looked like we were some cute couple in love, and we are. So you just kind of work out that shorthand with those people around you. I love that.
00:21:38
Speaker
And I got to tell you, Cafe du Monde, I mean, when I went to Cafe du Monde, I was definitely wearing powdered sugar all over my body. It's almost impossible, you know, to get out unscathed from that. So, but I love that. And you had fun. I had fun. And my fiance ended up wearing all of the powdered sugar, which made me really like, I got to stay clean.
00:22:05
Speaker
Yes. Oh my God. Well, I love that. And I think again, I feel like the relationships are so huge, especially when we're just adapting to any challenge that comes our way in life. And for you, this was a, I mean, it was a difficult diagnosis and hearing, I think the word progressive has to be really scary as well. And
00:22:25
Speaker
And I'd love to know about that path for you, that, that resilience, how, because you've done so many incredible things and I think you've really brought a lot of meaning to the challenges that you've faced. And I'd love to know how you approach that with resilience and how you went from that surviving to thriving. I was raised in a household where there was no complaining.
00:22:51
Speaker
No crying, no complaining, no fussing, no nothing. We don't want to hear it. You do. You just do. You figure it out and you do. And so resilience for me is you just keep going. That was after two days of crying when I got diagnosed. I sat at home and I cried for two solid days when I first got diagnosed. And then I said, wow, I'm really boring myself.
00:23:16
Speaker
And if I'm boring myself, no one else is going to want to be around me. And what am I going to do now? How do I move forward with this? And I wasn't comfortable being vulnerable to go find big help, which would have their programs and services, which would have helped me if I'd gone looking for them. But instead I did the pull myself up on my bootstraps thing while getting sneaky help.
00:23:43
Speaker
I would say to friends, Hey, are you going to be home later? Cause I'd really like to go to the grocery store. We'd be around to bring in my groceries. And they're like, yes, we will bring in your groceries and we will put them away for you. So it was small helps you just do. And I don't know that that's a satisfying answer for how you get resilient. You just decide it's choosing my attitude is the only thing I actually have control over. And that's all anyone actually has control over.
00:24:11
Speaker
because the rest of control of our lives is just a giant illusion.
00:24:15
Speaker
Yeah. I mean, that's so true. And I mean, I think it's, it's sometimes difficult to make those shifts, but I think also, I think it's even more difficult sometimes to, I think we have to, I think you can be resilient and have the two days of crying or experience the emotion to it's, and then yeah, once it's, once it's kind of moved through, I mean, you're still obviously going to have the challenge at
00:24:41
Speaker
might still be, most of the time, the challenge is still going to be there. The difficult life moment is still going to be there. But you've least experienced the emotion a little bit, and now you can think about, OK, well, what's next, and how can I get there? I had a very, very different, but much smaller, unexpected life event take place not too long ago. And I was really angry. I still think rightfully so.
00:25:10
Speaker
And after a while, I experienced it to the extent I was going to experience it. And after a while, I'm like, I'm making myself miserable. And I do need to change the situation. But in the time that I can't, or when I can't be taking certain steps to where I need to get to, I need to figure out a way to change my attitude so that I'm not at wit's end every single day. I need to figure out a way to make this livable.
00:25:36
Speaker
And I think that's something we all need to do in whatever way is going to make sense. And, you know, for you, I think especially coming from the military family and then being someone who you are that multi hyphenate, you have accomplished so many incredible things. You've your your career is really outstanding. Just I think with those many hats, I'd love to know how this impacted your overall identity, especially when it came to, I guess, asking for help, but also just in life.
00:26:06
Speaker
It's important to feel the feeling. I'm just going to backtrack a little bit. It's important to feel the feelings and I used to compartmentalize.
00:26:20
Speaker
I was the queen of compartmentalization. I could put stuff away and not deal with it like nobody you've ever seen. And then I realized a whole lot later that that wasn't really healthy for me. And sometimes you just have to talk it out. And so I found therapy and I found therapy enough to talk through stuff and say, okay, awesome, done. And then I would stop therapy because I was better. So I think that it's important to get help.
00:26:47
Speaker
when you need to get help because there have been a lot of mental health challenges along the way, pre-diagnosis, post-diagnosis, associated with the dystrophy and not, you know, a lot of depression that's come and gone. And so that's part of building resilience is having the strength to get professional help when you need it and really working through the stuff.
00:27:09
Speaker
Yeah, I think feeling the feelings, it's a difficult thing, but it's an important thing. Yes. Sometimes I really hate it and I do, I want to put it in the box. And if I have to, to get through a moment, if I'm at work or something like that, sure, but I do need to
00:27:27
Speaker
you know, I'm finding more and more that my mental health is in a much better place when I'm actually taking the time to experience it instead of shove it down, you know, shove it down with food or with keeping myself busy or whatever it is. And that professional health piece. Yeah, that's so huge. And for you, you are extremely accomplished. You have done so many different things just
00:27:52
Speaker
based on the short bio at the beginning of our conversation, and you know, the multi hyphenate, so you wear a lot of hats. And I'd love to know how this diagnosis and the changes you've had to make have, I guess, impacted your identity as a whole.
00:28:08
Speaker
So the very first thing that my diagnosis changed regarding my identity was that I knew that in my future, I was gonna no longer have the identity of someone who walked. And I have to tell you, it was like a punch in the face. I'd been a tennis player and a runner, and I didn't know that there were wheelchair sports that were wheelchair tennis.
00:28:37
Speaker
and wheelchair racing is running.
00:28:40
Speaker
And I didn't know about wheelchair recreation. So I started doing things post-diagnosis that I knew were going to no longer be able to happen later. I took up belly dancing after I got diagnosed and I was super unstable on stage. I have to tell you, yes, I could still get my arms over my head, but they had to kind of swing to get there. And I was actually my, my boss. I was an engineer at the time and he wanted me to go get a master's in engineering.
00:29:09
Speaker
And it may not be really positive, but my first thought was, why would I have another degree in a thing that I don't want to do and I don't like? And I said to him, OK, I'll go take this calculus class. And I did. And it wasn't great. And he said, how'd you do? And I said, not great. He said, but the follow on course is going to interfere with belly dancing. And I'm going to belly dance. I know.
00:29:33
Speaker
This is actually the justification I gave to my boss. It's interfering with my belly dancing class. And I was working at Edwards Air Force Base. So this is kind of a huge, like what in his life. And I said, I'm going to dance while I can. And I will go take this calculus class again, when I'm sitting full time on a wheelchair, when I can't stay and dance anymore. And he said,
00:30:00
Speaker
Fair enough. I respect that. I said, great. And I left his office because when there became a time within like just a couple of years after that, when I couldn't stand and dance anymore and I had lost the strength to lift my arms to shoulder height and I became way too wobbly on stage. So I switched from dancer to drummer because I can change that identity, shift it and still be a performer. So I still had the big identity of performer identified as
00:30:30
Speaker
and a guitar player I'd been in the orchestra so performer was part of my big core identity and the pieces the belly dance piece shifted to drummer so that small identity shift let me keep the big identity of performer does that make sense yeah
00:30:46
Speaker
And I would imagine even now, even though it's a different thing, but the public speaking, it is, you are getting in front of a group of people that are coming to see you. And that does have to, I feel like that probably does tie in a little bit to that identity too. I hadn't thought about that, but yes, that's absolutely like, I want to be in front of people and I want to talk and I want people to look at me.
00:31:11
Speaker
I mean, I wasn't as wheelchair Kentucky after all, I did try to get attention, but in a very socially acceptable kind of way. Yeah.
00:31:24
Speaker
right? I talked myself into a tiara. I love that that would talk to me about how you got involved with that because that is so cool. And yeah, I've never had a miss miss wheelchair Kentucky or miss anything on the show before and I'd love to know
00:31:42
Speaker
So when I got diagnosed after I stopped crying, I went looking for things to do knowing I was going to have a wheelchair in my future. And so I started typing in wheelchair recreation and wheelchair sports and wheelchair looking. And there was tennis, and I was like, oh, pushing a chair is going to be hard. And I don't know how that's going to work out. And then I found surfing. And while I was looking up surfing with this group Life Rolls On,
00:32:08
Speaker
Miss Wheelchair California was at a surfing event with them. And so then that led me to go look up Miss Wheelchair California, Miss Wheelchair America to find out that it's an accomplishments pageant. It's not a beauty pageant.
00:32:23
Speaker
and the ages between like 18 and 65 or something. So it's huge age range and accomplishments. And I was just leaving the Department of Defense civilian world and had made the decision to stop having the identity of government worker and take on the identity of graduate student again. I had already earned a master's in computer science.
00:32:49
Speaker
And I was going to go start a degree in rehabilitation science and technology. And I thought, OK, well, I need a place to kind of land in it, but I need to work on school. I'm really going to focus on school. And when I'm done with school and I have a job, then I will go look up this military wheelchair thing. And I landed in Kentucky and I went to the first pageant. I went, OK, cool. This is cool. This is talking. I'm good at talking. I like people.
00:33:16
Speaker
Um, I have things that I like to talk about and I can do that. And so the next year I tried out and I earned a tiara for running my mouth, which the thing that got me in trouble as a kid, like this is good. And so my platform, because you all have a, every, every pageant person, like they have a platform and my, my platform was equality through technology.
00:33:44
Speaker
Yeah. So putting the right piece of technology into the hands of someone can be life changing. For me, the very first introduction to that
00:33:54
Speaker
was at the same conference that I'm at now, Rehabilitation Engineering Society of North America, Resna. And I met a woman who could make a piece of technology in five minutes or less. And I had a one quart Nalgene bottle, but I couldn't quite get my hand around because I was losing hand strength as the muscular dystrophy was progressing. And she took a one inch wide strip of plastic and bent it into places and put a
00:34:20
Speaker
piece of Velcro on the back and the other piece of Velcro that matched on my water bottle and boom, I had a way to hold my water bottle without grip. Wow. And I went, Oh, this is life changing for me.
00:34:35
Speaker
And they went, oh, that's really cool. So that became my platform, quality through technology. And it doesn't have to be high tech. Granted, I sit on a super fancy 468 pound standing power wheelchair these days, but it can be as simple as a strip of plastic bent into a handle for a water bottle. Yeah. And I think so often we don't realize how much something like that is life changing for someone because
00:35:02
Speaker
How often might you be using a water bottle? It could be pretty often. Well, tell me about your phone case. Do you have a plain phone case or does it have a pop socket or does it have like mine has a way to slide up and create a little fingerhold in the back? Oh, cool. Mine is a very generic phone case, no pop socket, this flat. A pop socket is technology.
00:35:31
Speaker
I hadn't thought of that. And that's so true. Right. It's, it's assistive technology because it lets you hold your phone in a way that makes it easier. And that's all assistive technology is, is technology that makes things more usable for everybody.
00:35:50
Speaker
That's so true. I mean, I think we do think of it as something that was created by NASA engineers or something like that. And it doesn't always have to be. It could be something that's still just, as you said, life changing. And it can be life changing for everyone and not just someone with a disability. Absolutely.
00:36:11
Speaker
Yeah, I completely agree. And I really hadn't thought of it that way. But I know so many people that use a pop socket that because they like how it feels because it's helpful for them. And they don't necessarily have a disability. But that's, you know, it's a useful piece of technology for them. Yes.
00:36:28
Speaker
That is so fascinating. And I really do love that platform because it really does. Yeah. I think that that's so creative. And it also really ties into the work that you have not only found impactful in your own life, but work that you've been a part of and that you have, I mean, you have a very strong STEM background to begin with too. And it's just a great tie into so many different areas of your life. And I think, yeah, something that impacts every single person. Yes.
00:36:57
Speaker
Thank you. Yeah. So I love that. And then you also, you did the parasurfing. So you've done a lot of really cool things. And I know that the new activities that you took on involved a lot of travel.
Traveling with a Disability: Challenges and Solutions
00:37:12
Speaker
You're traveling now. And I think, you know, I even see this on social media. I'm part of the Girls Love Travel group on Facebook and
00:37:21
Speaker
I saw something recently about somebody traveling with a wheelchair and just how difficult of an experience it was for them on a plane and how like there was very little accommodation. And I'd love to know a little bit more about traveling with a disability and because again, like these activities you've been a part of, they do involve that travel and it's something that you love doing. What have those challenges been that people might not
00:37:45
Speaker
think about? And do you have advice for anybody that wants to be more of an ally for that? Or even just ways that society as a whole can make this easier and more inclusive for everybody? Well, do you have four hours?
00:38:06
Speaker
I have several personal mottos. One of them is staying home is boring. Which means, given the opportunity, I'm gonna go. Just gonna go. In the time frame that's contained within the book that I didn't really speak about, I went to Scotland 26 hours in transit going to Scotland, and we took a plane to a shuttle, to a plane, to a bus, to a train, to a taxi.
00:38:36
Speaker
And my dad's like, I want to stay at home. I'm like, yeah, but dad, that's boring. And that I wouldn't have gotten to go to Scotland. It's exhausting if you're going to, but my number one tip to someone who uses a chair and travel and wants to travel is have a really strong friend to travel with you. Because there are times I just have to get picked up that there's no way around the situation because things are different. Bed Heights.
00:39:05
Speaker
are not standard in hotels. Toilet heights are kind of standardized because of the ADA, but surprisingly the bowl shape is not standard. So I carry a toilet seat riser and a roll of duct tape so that I can make things as close to the setup as I need them to be. Ramps seem really super obvious.
00:39:27
Speaker
And they are, but we are in New Orleans and we're rolling down a street and the sidewalk was all broken up. So then it was, okay, what are we going to do now? And I had two, there were two options. You either go backwards, you backtrack to cross the street and then go down the other side or drive in the street. I drive in the street a lot. It frustrates people, but there are no broken up sidewalks if you actually roll your wheelchair in the street. So it's just a little bit of playing Frogger every once in a while.
00:39:54
Speaker
that makes the people around me nervous, but travel is exhausting.
00:39:58
Speaker
Absolutely exhausting. And being out of my routine, things are very comfortable in my home. It is set up exactly the way I need it to. And right now, my legs are very swollen because I'm not sleeping in my own bed. I have an adjustable bed at home and I sleep with my feet up. And so it really helps the health of my feet. And here in the hotel, we've got like eight pillows under my feet trying to accommodate
00:40:25
Speaker
trying to make them, you know, be less swollen at night. Showers, rolling showers are complicated. And everything is just more difficult. But besides having a strong friend, you have to have a attitude.
00:40:43
Speaker
Like, just accept that things are going to take a long time. Just accept that things are going to be difficult. And so you just say, okay, let's not expect this to be fast or easy. And we're just going to take each challenge as it comes. And we're going to problem solve the tarnation out of it. And that's what we do. Everything that comes up, we problem solve it.
00:41:09
Speaker
And how are we going to get around this? And you just have to have a, how do we problem solve this attitude? And a whole lot of patience. Oh, and I said a strong friend. I'm going to say it again. And a really strong friend. Yeah.
00:41:21
Speaker
who will do anything. It's the, I'm 21 years post-diagnosis, I need a lot of assistance with personal care, as you can imagine, since I can't pick my arms up off my lap. And so it's a matter of having a friend who's like, yeah, totally, I'll help you in the bathroom, whatever you need. You need me to pull your dress down, up, you know, wipe, whatever it is, I'll help. And so it's important for me that I have those friends.
00:41:46
Speaker
But I don't want to turn all of my friends into those people. Does that make sense? Yeah. There are some relationships that I just don't want to have that relationship with that person. I want to preserve the distance. And that's an okay space too. And it's not that I don't trust you to help me. It's that I just want this relationship to be a little bit different. Yeah. It's just a different boundary.
00:42:10
Speaker
It's a different boundary and they're all boundaries of love, right? The really close in ones and the ones a little further out. It's all love. Yeah. And I think it's important because I mean, I think that ties very much into your platform of how we define ourselves and how we decide. And we also get to decide how, you know, what those boundaries look like. And we still have that power to do that.
00:42:39
Speaker
Absolutely. Yeah. Oh, I love that. I think that's such an important point and I'm sure it can be very difficult. I've definitely seen play. I was actually just looking at a place recently that I wanted to do this historic tour and I'm looking through the FAQs and I'm seeing that, you know, when it asks, one of the questions was about accessibility. And I see so many of these places that say something very similar where it says, yes, we're accessible, except you have to get up these stairs or you have to,
00:43:08
Speaker
like, yes, we're accessible, but only on the first floor, which, and then you can explore the grounds or something like that, where it's very, like, it is very limited. And I think they're all defining it differently, and maybe not in a way that the person that actually wants to access it can. And I think it's such a difficult thing. And I think society does need to change. I think that
00:43:33
Speaker
the technology, just continuing to adopt the technologies that again, it really benefits everybody is so, so huge. But until, until that happens, because that can be so slow moving, I think that positive accepting attitude that you have has to go such a long way, especially the problem solving. And you talked about some of the things you bring with you when you're traveling.
00:43:55
Speaker
First, do you have any other resources, things that people should bring with them when they're when they're traveling? And I know this could obviously differ by by person, but just other things you found to be really, really helpful when traveling that you would recommend somebody be sure to pack.
00:44:12
Speaker
I always carry a slide board or what's called a transfer board and they come in a variety of things. Mine is wooden because I like that one and it helps bridge the gap between my wheelchair and a bed so I can get back and forth. I have what's called a slide sheet and it's a piece of like parachute nylon and it goes between me and the slide board, which makes everything kind of slick.
00:44:32
Speaker
And then I do a lot of gravity assist transfers so my power wheelchair elevate the seat elevates, and so I can make my chair higher or lower than surfaces, so that always helps. I always carry with me an energy bar lavender essential oils.
00:44:51
Speaker
We joke that lavender fixes everything. I carry a stick of isogenic hydrate because it'll go in any water bottle and it will help with my hydration. Sometimes I get a little bit of vertigo if I'm super dehydrated. I carry a portable urinal, you know, gross.
00:45:09
Speaker
But everybody pees. I carry my cell phone in case of emergencies because my wheelchair has a USB charger on it. I always carry a power cord that will let me charge up my phone. Plus extra clothes, like an extra dress in case things go very badly. And an eye mask. I have an app on my phone which has ocean sounds because that's my calming.
00:45:33
Speaker
That's how I fall asleep. I fall asleep to the sound of the ocean as a surfer. That just makes my happy place. And straws. Oh my gosh. Straws. I forgot. I always carry a straw. Yeah. It's difficult to pick up drinks. And so in New Orleans, it's been Cesarac with a straw. I love that.
00:45:55
Speaker
And all of those are so practical, and especially I think for somebody listening who is early into a diagnosis and wants to continue traveling and going on these adventures and still living life, knowing that this technology is available to them. And a lot of this, the straws especially, that is
00:46:15
Speaker
One of those things, I was thinking about that recently when I was driving, how it makes it so like, you know, not opening a bottle and taking my hands off the steering wheel, but it's another one that benefits everybody. It's good to have. And the more we can adopt, and I think also too, for people that are just maybe not thinking of it yet, again, early into a diagnosis or what
00:46:36
Speaker
have you to know that, again, it doesn't always need to be the high tech, whatever it is. I mean, that's certainly important to have, but that there are plenty of things that we already use in daily life that would be useful to have on hand for this type of thing that, again, we might not be thinking of. And you brought it up. Society needs to change. The challenge here is that the laws are in place and they're just not enforced.
00:47:05
Speaker
And so i call her my daughter and we're we're adopted we adopted each other that makes sense yeah there's no legal paperwork but she's my daughter and i'm the heather mom will be out in public.
00:47:20
Speaker
And we were in a downtown area and there were stairs and it said, bar this way. And I'm like, why? And I got really angry. I'm like, how come you get to go? And I don't get to go. Why did they get to decide for me that I'm not allowed to be there? And hear the language. They've decided I'm not allowed to be there. Yeah.
00:47:43
Speaker
They don't want me there because they they have decided not to make it possible for me to be there. Yeah. And she's like, Mom, don't get angry. And I'm like, I. She's like.
00:47:58
Speaker
Mom, ice cream, I went, oh, ice cream. So she knows how to distract me. But it's until equal access, and it was brought to my attention, the keynote here, he said equality is essentially everyone standing on the same box.
00:48:16
Speaker
Because all those boxes are equal to look over a fence. But equity is putting more boxes under the kid who's short. The tall person doesn't really need a box, the medium-height person needs a box, and the really short person needs two boxes. That's equity.
00:48:34
Speaker
As a wheelchair user, that's still not equity for me because I can't get there. And it's only real equity if you put a ramp there. So I can get there too. Granted, not every place is capable of installing a ramp. I get that. But I was just on Instagram and saw this traveler who said, oh, our new favorite piece of equipment to carry is a portable ramp.
00:48:58
Speaker
And I went, uh, uh, uh, uh, uh, no, no, that should not be my responsibility. Yeah. In Barcelona, we went to, we were in the Gothic district, and very, very old. And our tour guide tried to take us into this place for chocolate and show. It was the oldest shop in all of Barcelona. And they didn't have a ramp. And she went in and gave them a ration. It's 2023. She should go give them, and she chose to do that, which I really appreciated.
00:49:27
Speaker
And the next shop we went to went out and brought a ramp out and set it down because they understood access. So then it wasn't my responsibility to bring that ramp, but it was the shop's responsibility to provide that ramp. And one of my friends who uses a chair will say, what are you going to do to accommodate me?
00:49:45
Speaker
I actually find that language harsh. My choice is what accommodation will you make for me? What's the accommodation, right? Because that's what's required is accommodation. And so in the grocery store, if I choose to go alone, the accommodation that they will do is they send a personal shopper with me. So I'm going to push the cart and I'm going to get the stuff off the
Accessibility and Equity in Travel and Infrastructure
00:50:09
Speaker
shelves. And that's the accommodation.
00:50:11
Speaker
And that works for me. My favorite little sushi place in Pittsburgh had steps. I would knock on the window and they would bring me a menu and I'd order my food. And they'd bring the food out to me as an accommodation. So not every place has to have tech fixes. Sometimes they're people fixes. In a historic building outside of in Louisville, like you were saying, only the first floor was accessible because it was a historic home. They weren't going to make a change and put it in an elevator or an exterior lift because they didn't want to change the thing.
00:50:38
Speaker
but they created a walk through google map video of the second floor now that's a good accommodation because i still got the feeling of the walk through so i still got to participate just in a slightly different way.
00:50:54
Speaker
And it's really important that the line not go back to separate but equal because we all know that that's a joke, right? That's not actually equal for even equity. So the house just passed the FAA reauthorization act and airlines are finally going to start addressing wheelchairs on airplanes. That's a big jump that's been a long time in the works. So we'll see how that one works out. I'm excited to see where that goes.
00:51:21
Speaker
Absolutely. Yeah. I think that's huge. I know that that's something again, I've been reading a lot, especially lately. And I think some with air travel being kind of difficult right now with weather and cancellations and all of that. I think, I think this is why it's hitting my newsfeed a lot more because I don't normally follow this group that closely.
00:51:39
Speaker
But I have been hearing so much about the issues and the lack of care that a lot of the airlines have for the wheelchairs and for everything else. And yeah, I think that that is so, so important. And to understand that, you know, I think some businesses will make an argument of budget and to know that there are so many of these things that you mentioned, these solutions that businesses brought that
00:52:02
Speaker
That's not a budget consideration. That's somebody walking outside and that's equitable, but it's also it's customer service. You are serving your customers and you know those accommodations are so important. It doesn't take a huge.
00:52:18
Speaker
you know, for somebody that's working there that is able to do that, you know, to be able to offer that. I've been to so many buildings where there are the buttons to open the doors that don't really work or they maybe put one in because somebody requested one. But I mean, I was in a building where they had one for the men's room, but not for the women's room because there was a man in a wheelchair that had requested it. And my thought was, okay, well, maybe a woman hasn't requested it yet. How many people
00:52:47
Speaker
go in and out of this building at different times. How many tenants do we have renting space in the building that cycle in and out? How many guests? How many new employees? Whatever. And, or just visitors too. You never know who might need it at any particular time, but it's just, I feel like so often it is like based on a request versus something that we really, it really should just be the default that we have it. Thank you. It should be the default and people will cite budget.
00:53:17
Speaker
in those instances. A powered door opener like that is for a business.
00:53:24
Speaker
I know because I helped fund and find one under $5,000. And someone's going to say, $5,000. That's a lot of money. Well, I don't want to know what the settlement is going to be on the lawsuit when someone gets trapped in the bathroom. You know, we do as a society need to need to default towards access. We just do. And I've been trapped in bathrooms more than once. And it's not okay. It's so not okay.
00:53:52
Speaker
I do public relations and business development and not equating my situation, but there are times where I'm wheeling a cart full of supplies and the buttons on the doors won't work to get into the building and maneuvering to try to get it. Maybe I'm at a time where there aren't really a ton of people around where there isn't somebody physically there to help me. A button should work and it doesn't. And there have been times I could have really hurt myself just trying and
00:54:22
Speaker
Again, noticing that this is helpful for everybody. It's not singling people out. It helps a lot of people. I've seen plenty of people use that technology when it's available. Again, it's beneficial to everybody. We should have it. I think it's so important. I try to ask those questions sometimes because I can't imagine how often
00:54:45
Speaker
for someone who's going through it, like how unfair it is to have to ask and request that as often as that might come up, because it's already frustrating that that's not there in the first place. But I'd love to know for those listening who maybe don't have a disability, but they want to be better advocates, allies, and contribute to that accessibility, what can we do?
00:55:09
Speaker
Observe, notice when it's wrong. I would venture, I guess, that when you tried to hit that button and it didn't work, it's because someone turned it off on the inside, because there's a switch. Observe and request. I have a lot of friends, and as you say, I have a wide network of friends, and I'm very grateful to have such a huge support system, and I acknowledge
00:55:34
Speaker
that it is, in fact my editor was like, there are too many names in this book. Like you don't have to name everyone who's ever helped you. And I wrote her back in an email and I said, this is a third of the people who've helped me. Like the huge cast of characters and some of them get unnamed in the book, but this isn't even everybody, like not even close. They all say, wow, I look at bathrooms now.
00:56:00
Speaker
Yeah, I look I look at public bathrooms now. And I go talk to management. I'm like, whoa, like, yeah, one, my small corner of the world, my little my group of friends are all starting to think and talk and ask for changes.
00:56:16
Speaker
They ask, you know, they'll ask places when I'm not even around, they'll say, you have a ramp. Hey, my friend has used the power chair. How's she going to get in here? How do we fix this? And so you just go be an advocate. You ask for solutions. And if we decide who we are, we can decide that we're advocates for making everything accessible as a default.
00:56:39
Speaker
it shouldn't cost me more in the new house that I'm constructing to remove cabinets from underneath the sink. I'm having fewer of them. Why is that going to cost me more? Why isn't the default accessibility? The default should be accessibility. The more people we get talking about it as a need and as it should be the default, the more I think it's going to happen.
00:57:06
Speaker
I think airlines are finally coming around because they realize that the boomers, the age group who was post-World War II and ends in 1964, that they are the fastest aging group with the most amount of money.
00:57:23
Speaker
And so the group getting the most disabled with the largest amount of disposable income. And money talks. Money has always talked. I mean, there have been super high-end first-class airplane thoughts for a really long time. But until the airlines decided that it might actually benefit them to accommodate people with wheelchairs, oh, I guess we should finally get around to doing this in a way that doesn't cost us a lot of money.
00:57:51
Speaker
It takes a lot of talking on my part when we talk about travel. I booked my hotel room the minute I learned the conference was going to be here. I booked my hotel room eight months ahead and I did it by talking to someone directly at the hotel.
00:58:07
Speaker
I asked them to send me pictures of the room. I asked for descriptions of the shower and pictures of the shower and pictures of the grab bars and pictures of the location of the toilet and to measure all the doorways and to measure the height of the bed. Do you have to do that when you travel?
00:58:22
Speaker
No, but at the same time, there are photos online of certain amenities and things like that. And I wonder how much more work it would be for them to include when they're already writing their flowery description of the room to add measurements. It's actually written into the law.
00:58:42
Speaker
It's been written into the law that since 2013, so for 10 years, it's been law that wheelchair accommodations and mobility accessible rooms and other ADA rooms, because there are hearing accessible rooms that have been split out apart from each other, that there's supposed to be a floor plan online, a floor plan that shows you the room setup. I've seen one and it was at the Venetian.
00:59:07
Speaker
I was like, oh, well, that's not going to work for me. How did they call that an ADA room? So there are supposed to be floor plans. There are supposed to be complete photographs. I just, while we were traveling cross country, I just did it at a place that said it was the accessible cabin and it showed a picture of the bathroom.
00:59:26
Speaker
I can see the rolling shower and i can see the toilet and the grab bars and the curtain was pulled back and i thought this is great and so i booked it and when we got here there was no bench in the shower.
00:59:40
Speaker
Oh, I don't travel with a shower chair or a shower bench. I made the presumption that it was hiding behind the curtain, which was a poor assumption clearly. But if you ever roll in shower, the law says you're supposed to have a bench. So we have to make that the default. We have to start requesting the default until the hotels and the rest of society catch up. That access is the default.
01:00:06
Speaker
Yeah, because I truly, I mean, that boggles my mind. If I heard accessible bathroom in a hotel, I would assume that the shower has some kind of seating arrangement. We were there for three days and I didn't get a shower in any of that time because I couldn't shower. And that should have been their responsibility for them to find a solution to that.
01:00:29
Speaker
Right. I mean, I found the person in charge and I'm like, hey, this is not okay. And let's start with this is just not okay. Not only is it illegal, but it's just not okay. Well, and I would imagine you were not the first person to use the room that needed the shower chair. Right. They built that particular set of little cabins in 2011. The 12 years they've had 12 years to put a shower bench in there. I think that's the big takeaway, right? Is that we have we have to decide that we're allies and advocates.
01:00:58
Speaker
and to create a new normal. I think that's so so important and I really appreciate the work that you're doing just bringing some of this to light and not only I think first of all you know you're helping so many people that you know maybe they're especially when they're early into a diagnosis and not sure of what they're going to need down the line but
01:01:21
Speaker
Also, I think, again, it just makes the world a more equitable place. And there are so many people that think, well, I don't need whatever accommodation because I'm able-bodied, whatever, but they could have an injury. They could also just, you know, potentially benefit from that technology. And even if they never need it, why keep other people from having that access? It does not, if I don't use a shower chair, it doesn't hurt me if shower chairs are in every shower.
01:01:49
Speaker
Right. Well, and they're they're fold away bunches. They get out of your way. They fold up out of the way. Right. And then the hotel should and then the hotel should maintain them because the bolts get rusted. And the you mentioned an accident.
01:02:05
Speaker
I mean, I know a man and his phrase is that he calls every person who's not already disabled temporarily able-bodied, which I think is kind of slap in the face. But it's true. Everyone is one accident away from needing all of these accommodations or a subset of these accommodations.
01:02:25
Speaker
And I don't wish these accidents on anybody, but they happen, right? Plus there's aging in place. We're all aging. My body is aging a lot faster because of my disability. My 85-year-old neighbor used to run circles around me.
01:02:40
Speaker
And it was fun to watch her on circles around me. And then it made me tired. Watching her put on her little Tyvek suit and picking up patio furniture and spray painting it and stuff. And I was like, wow, that's really cool. I'm going to go read a book and take a nap. So sorry, I got way off track, but you understand.
01:03:00
Speaker
Yeah, I mean, it's so important. Again, it does not hurt somebody who doesn't need the technology for that to be in place. And it could be temporarily useful to somebody as well or permanently. You just never know. So I have been paying a little bit more attention. And it is something I want to speak up on a little bit more because it's something I've really been noticing, like, wow, this button doesn't work.
01:03:27
Speaker
or this is definitely not accessible in any way or yeah just I think noticing these things is so huge but and even I was on a middle school campus today and I can't remember what it was with the like the way the doors closed in the bathrooms and like there were definitely some things wrong with those bathrooms.
01:03:46
Speaker
rooms for those kids. And I'm thinking like, and usually I think about like in the schools, like hopefully you're you're getting the newer and the better, but maybe not sometimes because whatever funding they may have. But yeah, I mean, everywhere really starting to notice it. And
01:04:01
Speaker
I love that you're noticing. I love that, you know, because that's how things change. Things get noticed, and then they get talked about. And I was talking to someone recently, and he said, the bathroom in his building, he pushes a chair, he sits on a manual chair, and he pushes it. And he said, one of the bathrooms in the building that he works in, the door to the handicap stall swings in. Oh, not out.
01:04:25
Speaker
And so he has no way to get in past the door with his wheelchair to get all the way into the stall to shut the door. Oh my gosh. Right? And because someone just didn't think about it, they're like, Oh, this is good enough. The door swings. And so it's, it's all of the millions of little things. And they have a friend and I would call her and I'm going, Oh, death by 1000 paper cuts. And she's like, Okay, tell me your paper cut.
01:04:52
Speaker
I'm like, oh, well, I was doing this and I dropped my laptop on my leg and then gouged my leg and now it's bleeding. And, you know, it took me three months longer. It took me like 15 months last time I did this and sealed up. And she's like, that's not a paper cut.
01:05:07
Speaker
Tell me your next one. It's always going on and on. She's like, Heather, those are nine non-paper cuts that you're trying to juggle all the same time. You need to understand that sometimes you have, you know, your issues are bigger than you think they are and stop minimizing them. But if everyone is just paying attention, then the, oh, this is good enough, doesn't get passed on, right? It gets fixed. Exactly. And it needs to all get fixed.
01:05:34
Speaker
And so what I want to ask you about the button, cause I want it, cause that keeps coming up the button on this, the building that you pushed a they're not required. That's the weird thing. They're not actually required. The other thing is, is that I want to ask you how high it was. Could you hit it with your elbow or did it, would you have had to use your shoulder?
01:05:55
Speaker
I think elbow. And I don't know how tall you are, but most buttons are put in at like 36 inches high. That's kind of the standard, right? I'm on my wheelchair, I can hit it, no big deal. When I had a service dog, she could reach up and hit the button, no big deal.
01:06:13
Speaker
The ADA says that that button can go in anywhere between 15 inches off the floor and 48 inches off the floor. Oh my gosh. Anywhere in that range. That's the contact ADA reach range. So my dad's club and someone had put the button in at 48 inches and he said, well, that's weird. And I said, right dad, that's ADA usability at play, right?
01:06:39
Speaker
They put the button in to code, but it's not usable for me because I'm gonna have to elevate my chair and then snap it with my head, you know, or ask my service dog to stand on the back of another service dog to then perform her, you know, her task. And like, this is not useful. This is not useful.
01:06:58
Speaker
And so we have to get past the, oh, we did code. It's good enough, right? We made it to code, but if it's not usable, then why did they bother? Yeah, 100%. I mean, the one button that I'm thinking of, it's either on the outside of the building, it works, but not on the inside, like exiting or vice versa.
01:07:22
Speaker
And that's something I actually fully plan to test out the next time I'm at that at that particular office, just so I can put in the work order to say, Hey, this is not working.
01:07:33
Speaker
Awesome. Thank you. It's, it's great if I can leave, but not great if I'm coming in or whichever way it was. And I guess maybe if you can leave work. Great. Maybe, maybe if it doesn't open to go to work, then okay. I guess I'm not going to go today. Uh, but no, like you want it to, I mean, it's great that it's there. And I, I believe it is that that 36, um, that 36 inches roughly, but yeah, if it, if it only works on one side or.
01:08:01
Speaker
Right. Well, it doesn't take anything. And shouldn't we be guaranteed independence? Right. Like you want to be independent. So July 26th is the anniversary of the signing of the Americans with Disabilities Act, which is actually a bill of civil rights, which are supposed to guarantee me access and independence. And some calendar actually called it a disability independence day. And I wrote a whole article on what?
01:08:32
Speaker
I was basically like, what? What am I independent from now? I'm very confused by that. So there's a lot. Yeah. We just have to go back to things standard and better advocate.
01:08:46
Speaker
Be an advocate. That's a weird word, but it's the word, right? Exactly. See something, say something, talk about it, fix your corner of the world. Yeah, exactly. Put in your work order, call the whoever it needs to be to get it done. It doesn't take that much time to do it when we notice it.
01:09:08
Speaker
Oh my gosh. Yeah, that is so important. And again, I'm so inspired by the work you're doing. I could talk to you all day. But I do have a few rapid fire questions. I love to ask the guests. Yes, they are all the same for everybody, but just kind of fun to see where everybody lines up. But my first one for you, and this could really be anything. What is your favorite self care practice right now?
01:09:31
Speaker
So I have to, one of them is putting my feet up, which takes a lot of work and a lot of remembering to just really do actual self care. I'm so attached to my cell phone or my computer, neither of which I can actually use if I've got my feet over my head. And I just need to take that five minutes to get the swelling out of my feet every day to get the weight off my backside and really just do that self care.
01:10:00
Speaker
And the other is a little bit of essential oils, primarily lavender, because lavender fixes everything. Yes. Just a little bit on my chest while I have my feet up, it kind of just calms me and helps me. Oh, yeah. Lavender is one of my absolute favorites. Right? It's great.
01:10:18
Speaker
Yeah, I just had lavender, peppermint and lemongrass all together. And I can't remember what she called the concoction, but it was magical. And I have all of them in the house. And so I'm very excited to try that. But the lavender is the number one probably for me as well. I use that three combination actually with a little bit of water in a spray bottle to cool my skin. Oh, that is so nice.
01:10:44
Speaker
And it was given to me by a friend in, I live in Phoenix and was overheating. And she's like, here, have the spray. She sprayed me out of the bottle. And I was like, this is magic. So yes. Yes. I love that.
01:10:59
Speaker
Now, if you had a one word theme either for this year or just this time in life, cause I know we're kind of in the middle of the year, what was your one word theme be? Love. Love. I started dating my high school boyfriend again in January. Wow. He found me, um, and we got engaged in May and he's new to all of this world that I live in, in this world, this world of disability.
01:11:25
Speaker
And when things are rough and scary, because they get rough and scary a lot as we're traveling and trying to work out all this new stuff, we'll put our foreheads together. And what we say is love, not fear. And we repeat it back and forth to each other until we're both in that same calm place again. Love, not fear. Love, not fear. And so love, it's how I connect to my friends. It's how I approach strangers open.
01:11:54
Speaker
People will help you more if you're in a space of calm and love, even if you're kind of worked up and angry. If you can get yourself back to love, not fear, then the world responds to that better. Oh, a hundred percent. I absolutely love that. I'm going to, I'm going to try that next time. Okay. Love to hear how that works out. Yeah. And my, my last rapid fire for you, what are you most looking forward to right now? The next five minutes.
01:12:24
Speaker
Oh yeah. I'm always looking forward to what's going to happen next. I love being in the moment and I love the surprises that come in the next five minutes. Traveling, staying at home, is my cat going to come out from hiding and come snuggle? I'm a photographer and so I'm always looking and aware and observing and looking like, oh, the clouds are cool today. Hey, did you see that bird? Hey, did you just smell that smell on the air and just
01:12:54
Speaker
loving every single minute of everything. So I'm just looking forward to the next five minutes. Oh, that's beautiful. Thank you. Yeah, I love that. Well, Heather, I really want to thank you for taking this time with our listeners for taking this time with me to share some of your story and you know how we can make that difference in the world and how we can make that difference to just create a better world that we all want to see and
01:13:21
Speaker
Your book is incredible. The work you're doing is incredible. And I want to thank you for coming on the show. For our listeners who'd like to learn a little bit more, how can they find you in your book and how can they connect with you?
01:13:34
Speaker
Oh, I want to say Valerie, thank you so much for having me on. This has been so much fun. I want to talk to you forever. Can we be friends off, you know, offline? Can we do that? Yes, please. Yes, please. Yes. Yes, please. It's awkward trying to be a grown up as Katie Sackhawk said.
01:13:54
Speaker
I don't know how to ask someone to be my friend as a grown-up. On the playground, you just go up and go, hey, you'll be my friend. But now it's grown as a subscriber. But yeah, I would love to be friends with you because that would just be great.
01:14:11
Speaker
You can find me on Instagram at Heather C. Markham. That's where everything is happening currently. If you want to follow the big work that I'm doing, makingwavesforgood.com. And there you'll find my ADA usability, my public speaking about the We Decide movement. It'll link out to the book.
01:14:33
Speaker
And my own web, my author website is HeatherCMarkham.com. My photography is at JustForTheLove.com. Making waves for good gets you everywhere. Awesome. I'm going to link all of those in the show notes. And I am so glad that you came on the show and very excited to be friends. Yeah, we just want to thank you again for coming on and sharing your story with us. And I can't wait for the listeners to get to hear it.
01:15:01
Speaker
Great. Thank you, Valerie. Huge thank you to Heather for sharing your story and wisdom with us. I absolutely loved Rough Waters and am truly inspired by all of the amazing things Heather has done to create a better world for all and for her resilience along the way. I encourage everyone to check out her book and to look for ways that you too can be an advocate and help bring more equity into your own community. I've linked all of Heather's information in the show notes, so be sure to connect with her to learn more.
01:15:29
Speaker
As always, I want to thank each and every one of you for tuning in and being a part of this community. If you have a topic that you would like us to explore in the future on this show, you can reach out to me on Instagram at Wellness and Wanderlust blog, or you can drop me a line at Valerie, V-A-L-E-R-I-E, at wellnessandwanderlust.net. One of the best ways to lend your support to the show is to leave a rating and review on Apple podcasts so that others can find the show better and so we can continue to bring on amazing guests like Heather.
01:15:58
Speaker
It takes just a few minutes out of your day and it truly makes a difference for podcasters everywhere. So if you find yourself tuning in from week to week, I would love to hear your thoughts. I hope you all have a fabulous day and cannot wait to see you next time.