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Home » Mindset » Advocacy and Overcoming the Odds with Win Charles

Advocacy and Overcoming the Odds with Win Charles

Win Charles is a force to be reckoned with. She’s an author, motivational speaker, and podcaster (for over 10 years!). Win’s single-handedly dismantling the limiting beliefs people have about cerebral palsy and other chronic conditions.

We talk about what cerebral palsy is, how people can get access to resources, and what to do when people engage in inappropriate staring. 

Related Content:

Spoonies, Self Care & Podcasting with Kelly ‘Nerdzilla’ Mendenhall

Listen on your favorite podcasting app

Things we talk about

Jen’s appearance on Ask Win Podcast

Ask Win Podcast

A Diary of a Fashionista (Artwork from C.P.) Podcast

Dan Can Shred

Win Charles on A Non-Mom Happy Hour

Win Charles

Meet Win Charles

Born with Cerebral Palsy, Win Charles has defied the odds by becoming an author. Her memoir I, Win is an amazing story of how she remembers her life through the years of having a condition called “CP”.

As a competitor in the Kona IronMan Triathlon, CEO of her own jewelry design company, and motivational speaker, Win Charles truly is an inspiration to many. Today Win Charles tours the country, speaking to schools and institutions to raise awareness about cerebral palsy and living a full life no matter what holds you back. She is also an advocate of veterans across the world.

Show your support: Sign up for Win’s newsletter to stay updated on new releases and appearances.

Or find her here:

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Win’s custom jewelry and art

advocacy and overcoming the odds with win charles

 

Transcript: Advocacy and Overcoming the Odds with Win Charles

Win Charles is a force to be reckoned with. She’s single-handedly dismantling the limiting beliefs people have about cerebral palsy and other chronic conditions. We talk about what cerebral palsy is, how people can get access to resources, and what to do when people engage in inappropriate staring. All that and so much more here on Women Conquer Business. [music]

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Let’s meet Win Charles. Born with cerebral palsy, Win Charles has defied the odds by becoming an author. Her memoir, I, Win, is an amazing story of how she remembers her life through the years of having a condition called CP. As a competitor in the Kona Ironman Triathlon, CEO of her own jewelry design company, and motivational speaker, Win Charles truly is an inspiration to many. Today, Win Charles tours the country, speaking to schools and institutions to raise awareness about cerebral palsy and living a life no matter what holds you back. She’s also an advocate of veterans across the world. To show your support, sign up for Win’s newsletter to stay informed and updated on new releases and appearances. All the links to reach her will be found in the show notes for this episode.

Please welcome Win Charles to Women Conquer Business.

Hey, Win. Welcome to the show.

Well, thank you for having me on, Jen. And for those of you that don’t know me from [inaudible], my name is Win Charles. I am a motivational speaker slash soon-to-be full time podcaster. And I run two podcasts, one of them being Ask Win, which is my interview-based show, and you guys should really go check out Jen’s interview on Ask Win. She was interviewed on Ask Win and did a fabulous job. And this is why I’m here today. The other one is based upon my physical disability called cerebral palsy, which– cerebral palsy is a lack of oxygen [birth?] injury at birth. And so that’s how I got cerebral palsy, and now I’m raising awareness along with a slew of other disabilities like heart attacks, [inaudible], meningitis, lung cancer, and we’ll get into all why I say that in a couple minutes. But thank you for having me on.

Sure. I’m so glad that you’re here. And so there are a lot of things that I want to talk about, like how you’ve had a podcast for so long and your journey. And so I really just kind of want to start with the journey part, and then I feel like we can get into the advocacy and all of these different pieces. So would you mind sharing with everyone how you got where you are today because you’re doing so many amazing things. I think it’s important for people to understand how you are on the precipice of being a full-time podcaster and things like that.

Yes. Well, I back in 2010, after I lost my mom to a [full-leaking brain aneurysm as well as?] viral meningitis, I decided to write a book. And at the time I self published the book. The book is called I, WIN; I comma W-I-N. And yes, Win is my legal name and it’s spelled like that. And so after that, I wrote– after losing my mom I wrote the book. And she was the catalyst of me writing this book, and she’s also the catalyst of me finishing up and going back to school for my journalism degree– [inaudible] journal degrees [inaudible] education.

And so I thought, “Okay, that’s it. I will write this book, I will go back to journalism school.” Well, unbeknownst to me, I would have another curveball in my life and lose my dad, in May of this year, May of 2019, [inaudible]. And so my mom really set me on this journey of raising awareness, not only for cerebral palsy, but for heart attacks and lung cancer and meningitis and everything else. My dad, on the other hand, set me up for raising heart attack awareness, and lung cancer awareness, because my brief encounter with lung cancer via my dad, and he was only 68. And so I really want to raise awareness about lung cancer because lung cancer is one of those cancers that people don’t know a lot about. They know more about breast cancer than they know about lung cancer.

I think that that’s true. And for example, my great-grandmother died of lung cancer. She was Mormon, LDS; never smoked a day in her life. And it was only years later that we realized that under the house there was a great deal of radon, which is one of the big causes of lung cancer for people. So you should always, for example, have your house tested for radon if you’re going to buy it or if you’ve lived there and never done it because it really can make you sick. It’s not just smoking.

It’s not just smoking. And you’re bringing up a good point Jen. My dad, he ran a professional [sound?] home-entertainment company from ’86 to 2010. And with cutting into drywall, the drywall dust got into his lungs. And, of course, they don’t wear a mask or anything. And of course, he didn’t. So he didn’t wear a mask, and so that’s what we think [had given way to?] his lung cancer. And yeah. So it’s not all about smoking; it’s about what are you doing in your daily life.

Just as you said, “My grandmother died of lung cancer because of radon,” and my dad died of lung cancer because of drywall dust and when he didn’t take care of himself, but that has nothing to do with it. A lot of people have been asking me, and I’m sure they asked you [inaudible] [your?] grandfather died that he smoked. And a lot of people have been saying that he smoked. And, no, it’s not true that lung cancer is lung cancer and we have to deal with it as the next kin. And we have to deal with it as grandchildren, and grandsons, and granddaughters, and the next of kin in my case.

Absolutely. And I think people ask about smoking because it’s like they want to be able to blame somebody. And the truth is that that’s not really how cancer works [laughter].

No, no, that’s not how cancer works. And unbeknownst to us, it was stage four lung cancer.

Ah, I’m so sorry. That’s a lot to go through.

That’s okay. That’s okay.

So do you think that people are becoming more aware of cerebral palsy and where it comes from?

Oh, no. Oh, no. Oh, no, no, no, no, no, no. And this is [nice?]. We still have a long way to go, honey. We still have a long way to go about CP and where it comes from because there’s enough research out there and not enough awareness. And there’s enough research until I’m blue in the face. I’m the only woman with cerebral palsy doing two podcasts about cerebral palsy. You’ve been to one of the interview show. And so, no, there’s not enough awareness about cerebral palsy.

Jen, I think I totally agree. Jen, I think that we met through our mutual friend Kelly Mendenhall who talks a lot also about chronic illness and raises awareness.

So what are the most important things that people need to know about cerebral palsy?

Ah, the most important thing that people need to know about cerebral palsy is that don’t judge a book by its cover. Some of us have college degrees. I have one college degree. I’m working on my second one slowly but surely. We’re starting that up in January 2020.

 And so I feel like don’t judge a book by its cover. Don’t necessarily talk to the aides about who’s dealing with, talk to the recipient of the care, they can handle it. And don’t judge a book its cover. I am a force to be reckoned with [laughter]. I may be tiny, but I’m mighty, and I’ve always been mighty.

I mean, I don’t know if you guys have the song, Stand For Your Rights by Ziggy Marley, but that has been my theme song for all my life. And I will fight to the end for cerebral palsy, and so will everyone else in my life. If they see something’s wrong even in my aids or my friends, if they see something wrong. And when in trouble they come and help me. I mean I had more people in this house on May 19th than ever, than ever.

When they got called my dad had passed away the calvary came into my house. Even my best girlfriend who can barely walk came to my house and said, “How can we help? How can we help you and your stepmom”?

And my stepmom doesn’t really do the work that I do. Raising awareness of cerebral palsy. But it’s like how can we help the downtrodden? ​

And, of course, my aid who was hired by my dad, now my [inaudible], who was hired by my dad who was also in a form of bereavement. And she’s trying to help me and help her self when our lives turned upside down on May 19th. And I only left him in rehabilitation center on May 18th and I said, “I love you. I’m going home.” Well, my going home was to turn around and unbeknownst to everyone take [inaudible] [and ask?] when and take the follow up of [inaudible] to go help him [inaudible].

Wow.

And so, I said to him, I said to my dad via text message, I said, “If you need me I’ll drop everything. I’ll drop everything to come down and help you and help support.” And he goes, “Well, thank you.” And the only reason I stayed home is because I was finishing up a winter semester of my journalism degree and he knew that. He knew that going in. And so, he fully supported my journalism degree. And so, he also figured that I was going to be fine at home with aids. Of course, I was. So he also knew that journalism was something near and dear to my heart. But I said to him via text message, “If you need me I’ll come down. I’ll drop everything.” And I also said to him, “You can do this. You can make it through.” And he goes, “I can.” And it turns out a heart attack [set?] him down. But and I remember I had to tell my fan base what’s going on because I disappeared for about three months.

Yeah.

And I took a back seat. It’s life got in the way. And I’m like, “Okay. Life gets in the way.” And when I got back on [inaudible] I had to explain to my fan base what was going on. And then explain to my fans what was truly going on on May 19th. And they were like, “What”? And I said, “Welcome to [inaudible] online. You’re going to be on this journey with me in your earballs.” And so, it’s been a wild and interesting journey this summer. But it’s all and all been a [inaudible] journey and [inaudible] to be the content creator to podcast raising awareness about cerebral palsy.

I’m so glad to hear that you’re surrounded by so many people who love and support you. And I’m curious because that can’t be the case for everybody. I think there there are a lot of people that don’t have that level of support. So what do you tell people with chronic illness or cerebral palsy– how you help them with finding the help and the support that they need?

I tell them, “Well, first of all, you have to look under, and depending on the way I say this, under every single rock to find what just you need.” Because in the special ed system, in Colorado and I’m in Colorado so I just use this as an example, they cut off services when kids are 18 – or you can stay in high school until you’re 21 – and then they cut off services and what I’ve been told by a vocational rehab of Colorado is we want to connect the use while in high school to continue their dreams and continue those services because once those services go bye-bye, those services are not coming back unless you find a way to get them back.

Right. Yeah and it’s not easy to find.

You as an individual and your families and your aids – let’s not forget the aids – have to find those services and have to look under every single rock, and, yeah.

So what would you tell a parent who just found out that their child has cerebral palsy?

In this day and age, [inaudible], ask when and this is what my heartbeat lies because I was born in ’87. I was one of those kids who– I have mono ataxia spastic cerebral palsy. That’s it’s full name right there. Now, I didn’t learn that until I was 30 years old. I always knew it as CP. But I didn’t know that until I was 30 years old. I didn’t know that until I read a piece of paper, a psychology exam, that was done on me for something else, and I know the world cerebral palsy, but ataxia spastic? What’s that? And I’m sitting in a grocery store parking lot learning about my disability. And I find it funny because I know exactly where I would have been before my dad read the report. And I’m like, “Look, Dad, I know the words ‘cerebral palsy’ but I don’t know the words ‘ataxia spastic.”

And so I learned about my own disability. I used to call it the mixed bag of cerebral palsy and I announced on my podcast I said, “By the way, you guys, can’t necessarily call cerebral palsy with me the mixed bag of cerebral palsy anymore, I actually have a diagnosis.” Now that I just found out a couple weeks ago, so that’s that. But in this day and age, now that we have so much content, people should really listen to ask when a diary of a fashionista but really a diary of a fashionista because we talked about cerebral palsy day in, day out. And so I really want to create content that we didn’t have when I was growing up. I mean, we didn’t have Zoom. We didn’t have podcasts. I told mom– the closest thing she had was a support group for people with cerebral palsy. She didn’t have Google. She didn’t have Google. And so a lot of people have been asking me, “Why do you do the work that you do?” I say, “Because I didn’t grow up with these resources. The next generation behind us is super lucky.”

Oh, I think so too, and yet, there’s so many misconceptions out there still. I hope that the increased access to information allows for more thoughtful interaction and engagement around all people. Lately, I feel like everybody has an opinion, and most of them I don’t want to hear. I think that the work that you do and the work that I do is more about bridging, understanding and helping people learn more in a very positive way.

Yes. Exactly. And the work that I do– and I occasionally sell books. This year I’m actually doing a little bit of an experiment, which my fan base doesn’t know yet. I told them I quit publishing books, but I’m actually doing a little bit of an experiment by only doing the podcasts this next year and then seeing how that goes. And if that goes successfully, I’ll stick with that as a way– I’ll go back to publishing books and publishing young adult, YA, novels but I’m trying this– need to do the podcasts.

Yeah. Well, you’ve had your podcasts since 2010 and one of the questions that I asked you when I was on your show was how have you kept it going for nine years, so I’m going to ask you on my own show [laughter]–

Oh, no.–how did you keep it going?

My best friend happens to be my assistant. The only [inaudible] happens to be my best friend and she happens to be my assistant. I said to her day one, and we were living at a distance. She was in Kansas City, Missouri at the time. And I said, “Hey, you want to do this podcast with me?” And of course, she said to her bff, “Yes, I would love to help.” And I said, “Hey what job do you want? And shes goes, “I’ll help you with [inaudible].” Speaking that [inaudible] speaking in she has a speech impediment too. And she also has cerebral palsy and how she got cerebral palsy was the umbilical cord got wrapped around the neck. So that’s [inaudible] cerebral palsy. And that’s [inaudible] acknowledged in her book if [Dan?] can [inaudible] that you can do it too which can be found on Amazon along with my book, I Can Win and along with a bunch of other my books. And so, basically what we decided together is she’ll do the scheduling and I do the motivational speaking and it’s enough turned out to be a little green [inaudible].It’s totally awesome. And I will say that– so I always get curious about who’s wanting to schedule with me. And I noticed her link at the bottom that was like, Dan Can Shred. And so, I clicked on it and I was like, “Oh my God. So she’s a skier or a snowboarder.”

[crosstalk] a snowboarder and I am snowboarding myself. I’m actually taking the season off due to I need to collect thoughts and figure out how I’m going to [snowboard?] again. But she actually started snowboarding fairly young and she never learned how to skate. Well, I learned how to skate. Gave that up at the age of 16 for snowboarding and I loved it ever since. And she and I go out together and she and I go snowboarding and we teach people about cerebral palsy. And another thing is we go with this program Challenge Aspen and today it’s November 11, 2019. And today is Veteran’s Day and one of [inaudible] talk programs is the [Kimmel?] being [military?] opportunity for [inaudible] that will be in the army and the air force and all that good stuff. So Jen I want you to put in the show notes] challengeaspen.org and it’s connected to Danielle’s website. You can put Danielle’s website in the show notes. And so, with those powerhouses and all lights, we’ll just carry on.

Yeah. Well, and that’s the thing. That’s maybe the most important thing about the whole conversation is that you’re a powerhouse, you’re surrounded by powerhouses and I think people make too many assumptions about other people.

Yes.

And what they think that they can and can’t do.

Yeah. What do you tell people when they make limiting assumptions about you?

Other than knock it off and stop staring at me, that will drive my– that will drive my support crew nuts when people stare at me because I’ve noticed kids do it and I’ve noticed adults do it too. And my aid said why are adults staring at you? And I’m like, “I’m so used to it.” And that will drive people crazy when they’re around me that [inaudible] people stare at me, but again, don’t judge a book by its cover. Just listen to me. Just listen to a women conquer business and just listen to the work that these women from all walks of life are producing.

Well, thank you for plugging my show too. I do think that people need to pay attention. And I think that if you find yourself staring at somebody, maybe have a conversation. Don’t just stare at somebody.

No. Don’t stare at somebody. No. Just move out of their way. The biggest pet peeve I find is when I walk into a restaurant, people [inaudible]. They don’t move unless I say, “Excuse me.” And I’m a tiny person, but I do have a powerful voice. And just open up and have the conversation with people. Not let’s have a staring contest. When people start staring at me, I will stare back, and then we’ll get into a staring match, but I– yeah the others are laughing at me at the last comment. But it will, and people are like, “Lynn, what are you doing?” And I’m like, “They stare at me, I stare at them.” And I just give them the evil eye and, so.

No. I was laughing because I was like well, that makes sense. If somebody’s staring at me, I’m going to stare right back. The only time I’ve really been stared at a lot was when I was in Peace Corps, because we were different. And it happened all the time.

Well, you’re right. It’s like I’ll stare at you back and then I’ll wave and say hi, and let you go on your merry way. But the first time an adult actually stared at me was with my aide, and it’s like, “Really? Really?” I can handle the kids, but adults? Really? And so, when I– this really [inaudible] me extremely well, and she’s no longer working with me, but she’s like, “Really? Adults stared at you too? Now I have to put my defense too to protect you?” And it’s like, “Okay. Not happening.”

Yeah. I don’t know what gets into people that they need to just stare. And I don’t know what we can do about it besides what you’re doing which is kind of raising awareness about it and talking about it. And staring back which is kind of like, “Hello? Yes, I’m a human being. I am staring at you because you’re staring at me.”

Exactly. And I’m like, “Really?” And this particular aide, you mentioned that Mormon. Well, this particular lady that was working with me, previously was Mormon and she wouldn’t hurt a fly. So you know the Mormon culture? They won’t swear, they won’t hurt a fly so it’s like, really? You put your defenses up now, we won’t hurt a fly but and she was about to say that about me too so but she will now get her defenses up if something’s wrong. She’s one of those people that will, as I said, will love and support me until the day I die and protect me to the best of her abilities now and so even now my family doesn’t understand disabilities and I’ve been not talking to them since June, thank you very much.

And so I am still trying to raise awareness for people with disabilities, especially those who– I’ve been abused twice, I will get it through with my court case but I was abused in the workplace and I am working on a court case against them now that also involves me in that word. For those and I [inaudible] professional, realizing, “Look, I’m really lucky to tell my own story because most abusers don’t give the abuses the power to tell their stories but I’m really lucky to be one of those women that can tell their story and get their word about abuse.” And I’ll go into my own detail once I can but people can be shocked when they hear that. So how I got abused by two of my [inaudible] and we’re still working on that case. But yeah, that was the scariest day of my life. The day after I turned 32. Happy birthday to you, you’re getting abused. And yeah, so that will be a very touching episode for those abuse victims and yeah, I’m just trying to raise awareness in about cerebral palsy and raise awareness about all disabilities.Yeah. I’m an abuse survivor as well and it is– I think that what I’ve come to understand or come to terms with is that the real power that the abuser has over us is if we keep it secret. If we don’t share what has happened and let that secret out and have the light of day, then they continue to have power. But the power goes away when you start sharing it and telling your story and letting people know. If you have that ability to do that.

[inaudible] and when my [inaudible] I will be able to hear my own story but that’s why I haven’t been able to speak to my family since June since they abused me and yeah, it’s been an interesting summer [inaudible] for one month after the abuse and and they know I can’t– they know I can’t send– they know I need 24 hours [inaudible] and so they just were so [inaudible] to my stepmom and they were just so rude to me, so rude to my aide, so rude to my stepsister that we don’t even want to speak to them again. They abused me emotionally, they abused me physically even though they didn’t [inaudible] me, they abused me physically too. So I’ve been hoping that since June 27 and our case is still not closed, so I haven’t been able to speak about that on my podcast yet, but I will when the case is closed. And that will be a powerful episode because a lot women and a lot of men and a lot of kids who get abused and I just want to make sure that the disabled population doesn’t get abused because the disabled population, caregiver and I want to put this out as a disclaimer, but my caregivers did not abuse me, it’s my own family that abused me. So a lot of the people saying that it will happen in a home, a lot of people think that it won’t happen with people that love you, but it will. Abuse can happen anytime, anywhere. And so, you might have a loving family member say, “Let’s do this,” and then they abuse you and [inaudible] against your will, you know, all that. And so, I just want to text the disabled community and make sure that they have the resources and of course, when I tell my story, I will give resources along with my story because I am now discovering– remember I said, “Look under a rock.” I am now discovering there are resources out there for abuse victims. And I didn’t even know about it. So I am super lucky to be one of the ones that is able to tell my story and able to tell my story with others.

I think that that’s so amazing and I am so troubled and heartbroken that it happened, and I think it happens a lot. I think we find that it happens a lot with children and it happens a lot maybe in different times when people are maybe not doing well. It’s like people take advantage of people when they are compromised in some other way. And I’ve heard a lot about abuse among people who are disabled or who have chronic conditions and I think it happens for all of the reasons that you say and I think it also happens because a lot of caregivers aren’t paid very well, so when the caregivers do that, it has to do with that. And the family members– I just think that the of care is just not as high of a standard as it needs to be to protect people.

[Agree?] that none of my [tend?] givers have done that. And I’ve, again, I would– I know what to do. I was the voice for the voiceless on June 20, then I saw [inaudible] today, and by the end of that day, we were all so shaken up that it was literally unbelievable. So when my case is closed, I’ll be able to share my story, but I just– and I will have resources for those who need help and I will be able to help everyone have a deeper understanding because I’ve been there and done that. And so I’m just– as I said, I’m just trying to raise awareness about disabilities and along with Kelly Mendenhall– and there’s a couple of others that want to raise awareness and Kelly is actually going– and this is public knowledge, too. Kelly is going through a little bit of a fight right now with her own health, and so I– when you have a chronic back condition like Kelly and I do, take the time for self-care . And Kelly and I talked about this. And Kelly, as soon as she’s feeling better, we’re going to launch a project together that she and I have been keeping under wraps. So we’ll let you guys know when that project launches, but. And that project is going to be pretty cool because I was a part of this project way back when, and then since her surgery– since her spine surgery, she’s had to put projects on hold. But I sent something to her and we’ve been talking. So we’ll let you know when that project–

That’s exciting. I mean, as you know– I mean, but people don’t. I mean, I think a lot of people have listened to the Kelly Mendenhall episode here on Women Conquer Business, but they may not realize that she is now two weeks out post-op from that back surgery. And in the meantime, has learned that SSA isn’t going to give her a disability status. And all kinds of things have been going on for her. She’s been in incredible pain. And so the fight continues. It’s an unending process for getting rights that should be afforded to everyone.

This fight continues and I am helping her behind the scenes. I’m helping a lot of it behind the scenes. I’m also [giving her?] space. But you guys need to go and listen to the Kelly Mendenhall episode on Women Conquer Business. You also need to go listen to Kelly Mendenhall on Ask Win. You also need to go listen to [inaudible] on A Non Mom Happy Hour which was Kelly’s and Debbie Jo’s podcast. So you guys, go do your homework, and just listen.Yeah. You’ve got a lot of stuff to listen to, guys, so. But I’ll have links to everything in the show notes. Do you have any closing thoughts, Win?

I have just– because we’re recording this on Veteran’s Day and because it’s the holiday season coming up, if you can, do something kind for the disabled. And do something kind for those less fortunate. Especially do something kind for the disabled. Invite them to your Thanksgiving table or buy them a coffee [inaudible]. I shouldn’t say that because I don’t drink coffee [inaudible] but buy them a hot chocolate, or just say, “Let me help you find a job.” Hello? Let me help you more than that. More than buying them gifts. Help them find a job, or help them with support on my podcast. And shout out with your friends, or just support people with those– with disabilities. I mean, it’s not that difficult, you guys. Come on.

That’s right. That’s right [laughter].

It’s not that difficult. And you’ll see when you– I believe that Down Syndrome is the biggest– I was actually talking to a woman this morning who lost a parent at young ages, has a disabled sister, wrote a book, and she’s coming on my podcast for an hour. And I’m just going to say to my fan base, “Look. This podcast will be an hour, and you need to deal with it [laughter].” And so just help the disabled. Buy books written by disabled people. Buy– support podcasts. Just help the disabled.

That sounds great to me. Thank you so much for being on the show.

Thank you so much for having me on. Thank you. [music]

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