Inclusion Experts Exclusive: 19-Year-Old Claire Wineland Is Living With Cystic Fibrosis and Might Have Just Uncovered the Meaning of Life
Apr 3, 2017
Nineteen-year-old Claire Wineland isn't your average girl. She breathes life into a room and has carried the weight of the world around her.
Wineland was born with cystic fibrosis, a disease where mucus builds up on a person's organs, clogging their airways. However, the terminal disease hasn't stopped Wineland from taking advantage of life.
In fact, it has done just the opposite. Wineland founded a community where she opens up about the deep topics we usually tend to avoid, including death and dying.
Founding Claire's Place Foundation, Inc., she has helped families living with cystic fibrosis through not just donation and awareness but through her energetic spirit.
MAKERS caught up with Wineland in an exclusive Q&A that may just change your perspective on life completely. Read it now:
Q: How was it that you decide to share your story with the world? What was that beginning moment like?
A: Well I don’t know. It was never a conscious decision. I've always been sort of a very annoying — even when I was a kid — just always had a need to talk, you know and put on shows and at thanksgiving dinner I used to make everyone be quiet and watch. I’d put on like an entire made up production and show and get dressed up and force everyone to watch. So I kind of always loved being in front of people and you know chatting their ear off and I think there’s just a certain level of what we consume in a whole as a society is kind of a very one sided perspective and that’s kind of natural that that ends up being what happens but at the same time I do think you kind of have some responsibility if you’re someone that’s has seen the world differently or had a different experience, you have a certain responsibility to share that in whatever way it is. It’s not always public speaking, it’s not always writing a book — sometimes it's just an art, sometimes it’s in the way you relate to people. You do have a responsibility to kind of share if you’ve seen and dealt with the world differently because that hugely changes the way that people see the world and I think at the same time there's — I think a lot of people are really ashamed about their experience as human beings if it doesn’t look normal. You know what I mean? People who have gone through a lot of pain and a lot of suffering and challenges — whatever it is you want to call it — there’s a tendency to feel embarrassed about it or not want to talk about it or not want to accept it and I think when you have people step — when you have people share their story and have actually been through things and have suffered, you kind of normalize it. It makes it more ok for people that take some pride in their experience and actually make something with their life in order to do something, to move forward, to take some of the pain and suffering that they’ve been through and actually use that because the first step to using it is kind of having some pride in your life and experience and so I think we have kind of a responsibility to share our story because it helps normalize that.
Q: So, when was the moment where you said, 'Okay, I'm going to create a YouTube channel — this is what I want to do?'
A: It was two-and-a-half years ago and I remember I just loved YouTube. I thought it was really fun. I thought it was a cool platform. I just thought, you know, 'Why not?' I'm used to talking in front of cameras and in front of people so why not just try it and it kind of just blew up. And it was one of those things that once I started, then I got more and more into it.
Q: Do you connect with your fans or people who watch your videos on a daily basis?
Q: So, do you have a connection with other YouTubers as well?
A: No actually, surprisingly so. There's a few people that I’ve met. I’ve recently — I got this — I don't know. The thing with YouTube is you're either all in or you're all out, you know what I mean? It's a very time and energy consuming thing which is surprising you wouldn’t think it would be that exhausting but it kind of is. You’re in the world, you’re out of the world. So, I’m always in this trying to have one foot in, one foot out with doing YouTube and not getting too invested in it because I still have a whole life to live. But at the same time share my story so I’m kind of currently I’ve been on a little hiatus from YouTube and YouTube people and all that. But I’m getting back in soon.
Q: What was or who was your biggest inspiration?
A: I was such a VlogBrothers fan. It’s so funny because they pretty much made YouTube what it is but few people know who they are. They’re like these two nerdy like 30-year-old brothers and decided to have a year of this is what YouTube — this is when YouTube was really new and first started—of communication where they wouldn’t talk through text or email or anything. The only communication they would have would be making YouTube videos to each other every day and posting it and talking about weird things and they’re just super nerdy and they were the first YouTube people I got into and I liked the intention behind it. I liked that they weren’t trying to make things too fancy or — they were kind of just talking about interesting things and that’s kind of what my YouTube inspiration was — them. And all the kind of weird, quirky YouTube channels. Like I love Vi Hart who’s this piano player — this incredible musician — who's also a mathematician and she makes these videos about music and math and I just like it when YouTubers talk about things that are real in a way. And I like the silly stupid stuff too like I love Shane Dawson but like there’s a level of like it’s a good platform to talk about things that matter so it’s cool when people do.
Q: How do you hope people that just stumble upon your YouTube page that aren’t actively watching approach it because you do talk about serious things that are kind of just a step back from the typical YouTube banter?
A: I think since it’s everyone’s choice it’s kind of like a — it’s sort of if you want to stick around and talk about that stuff if not cool. I wasn’t really expecting anyone to like it in the first place. It’s so funny too because I’m always so shocked when people do watch it and comment. I’m always like, ‘really?!’ But I think the truth is fundamentally we’re not turned off by things that are deep and we’re not turned off by things that are scary and actually people are really drawn to it and I don’t know when the notion came around that people don’t want to talk about death and that people don’t want to talk about uncomfortable things because I think actually, if you really look at it, that’s what we’re most drawn to. We’re kind of — humans are drawn to the dreary, the weird—we’re drawn to the things we all feel but no one talks about. That's kind of the stuff we want to be watching and we watch kind of mindless shit because we don’t want to deal with our life and focus on anything but I think when you get, you know — again what’s funny is I didn’t even think about this until now but my inspiration, I guess with the VlogBrothers was if you give people meaningful content, the way that they see the world will broaden and then they’ll look for more meaningful content and then because then there will be people looking, there will be more content and it will trigger something. So, I think that people actually are really interested in hearing about dying and death and sickness and life and the meaning of it all and I think we’re actually more interested in it than we think we are.
Q: You do talk about the meaning of life — and everyone talks about this hypothetical theory of what the meaning of life is and what’s the secret to it—do you know, do you have a definition for the meaning of life?
A: I don’t have a definition for the meaning of life, but I do have kind of a philosophy around it all, which is, my philosophy in life is very much so based off of the science of nature and the rest of, you know the organisms that live on this planet and how they function. It’s kind of like we're immune to the fundamental laws and nature of life and all that and I think, you know, there’s kind of this human suffering, right, so however you want to categorize that whether it’s being poor or sick or not having the right job or being alone or just being off — just having that off feeling about your life, right, that kind of human suffering and uncomfortability is never ever ever going to go away. I think that’s what it means to be alive is you feel uncomfortable and it doesn’t feel great all the time and there’s suffering and there’s challenges and there’s pain and that’s what it means to be a human and you’re never not going to have that and I don’t think — I think people say that the mission, you know, when people say that the purpose of life is you have to be happy I think that's — I never believed that the purpose of life was to be happy. I believe that the purpose of life is to take your experience whatever it is and make something meaningful with it. Make something that’s going to help people or actually give back to the world or just make something. Like don’t even do it because you feel like you’re trying to help something. Just take your experience and make something and live through it and don’t be afraid of the pain and don’t be afraid of the uncomfortablity because really, really beautiful things come from it. And I think that if you are someone who is what we like to call 'positive' who is like look on the bright side and all that, I think that’s great but you kind of have to accept the pain and use what you’ve been through to make something, not pretend that it’s not going on or pretend it’s not there and just force things to be happy because the truth is happiness is just a chemical reaction in the brain, it’s some dopamine being released and there’s a big difference between fleeting moments and happiness versus pure contentment with your life and I think contentment with your life comes from when you have a deep comfortability with your own suffering and your own experience when you accept it and when you have pride it in and you’re making something with your life and you’re doing something. I think that that’s not always going to be comfortable, it’s not always going to be happy and it’s going to be hard but that’s kind of the whole point of it and you have a much deeper satisfaction and comfortability with your life when that’s the case than if you’re just trying to be happy and ignore the pain. So that's kind of my philosophy to it all but I don't really know what the purpose of it is.
Q: That’s brilliant. You’re pretty bold in all your actions, how would you define what it means to be bold or how are you bold in your everyday life if you had to give advice or even just for yourself?
A: Kind of the best advice I ever got was simply: a tree in winter isn’t terrified of whether or not spring is going to come. Right? It doesn’t like debate whether it should keep going because it doesn’t know whether the spring is going to come again. It stays standing and then the spring comes and it’s fine. Right, so, humans tend to underestimate our ability to adapt to situations. We underestimate our ability to survive and handle and thrive in situations and we don’t trust ourselves. We never trust ourselves to be able to life or to be able to handle when things fall apart or be able to handle being alone. Right, we just don’t feel like we can, like we don’t have the brain capacity or the mental capacity or spiritual capacity and the truth is humans are incredibly adaptable creatures. Literally though evolution we’re bred and we have this incredible mind that is capable of so much and so much strength and so I think one of the best words of wisdom I ever got was to really trust yourself, trust your ability to handle life, you know. Trust your ability to be able to do it. That’s not something that you just tell yourself every night and then one night believe it. It’s something you have to actually go out and do things and realize that you can handle it by doing things. So, it’s sort of like a ripple effect or what came first the chicken or the egg, you know, do you trust in your ability and then you go out there or do you just go out there and then trust comes? And I say it’s kind of the second one. And I think there’s also a big — I kind of have a constant level of fuck you I’m going to show you — I'm going to show you that I can do something, or something important and I kind of constantly have that vibe going on about me. Not to anyone in particular just because there’s such this kind of belief around people who are sick that if you are sick, your biggest accomplishment in life is going to be getting healthy, you know, which what a sad, selfish way to live is spending your entire life trying to be healthy, you know, like who is that helping? Like what is that really doing? What does health really matter in the end if you’re not doing anything with your life and when you’re born sick you’re kind of taught that what you should be striving for all the time is just to be healthy and get better but I look at people in my life who are completely healthy but are completely miserable and be like then what’s the whole point, you know? What are we doing? So, there’s kind of a constant part of me that just wants to prove everyone wrong that I can be sick and I could be dying and live a short life but still feel really, really proud of it. I think we should all have that fire under our ass and I think that having that fire under your ass comes from having life experience, so again, my advice to everyone is literally just jump. Like, I moved out of the house when I was eighteen, while having a terminal illness and hours of breathing treatments every day and not having a way to make money or having a job because I had treatments to do all day and I was too sick to have a 9-5 job and I just did it and I now live in Venice Beach and I live with my best friend and I have so much fun and I get to travel the world and speak and run a non-profit and I’m starting my own — I'm working on helping hospitals redecorate rooms for kids that are sick and I’m doing things and I’m living and that’s not to be — that's not to brag about it. It’s to say that you can do that, you know what I mean. You can be someone that’s sick or who’s life doesn’t look normal and still, you know, be doing something and accomplishing something and living your life, so I guess that’s my long-winded advice.
Q: You can’t just grow into the type of public speaker that you are, all these thoughts you have you had to grow up like that. So, who are the women in your life that influenced you?
A: My mom and both my grandmothers. My grandmother on my dad's side is this hardcore liberal Buddhist. She chants — she does Nichiren Shoshu Buddhism which is how my dad was raised and she’s just a really, really incredible smart — just — I hate using the word strong from within because it’s so overused and you’re like what the fuck does that even mean but she is a strong woman like she’s one of those people you kind of feel like you could throw anything at her and she will own it and help get you out and I love the level of comfortability I had with her and then my mom’s mom was such an inspiration for me just because she had been through so much in her life and she kind of just found this sliver of peace and happiness and she cultivated it for herself. I always kind of aspire to have her level of — she just — they live in the middle of the woods and her and her husband who she’s madly in love with just read books all day and take care of foster kids and I’m just like ‘ah yeah!’ They kind of just created a life for themselves that I just am really inspired by women who have gotten—women who aren’t in their thirties or forties but women who have lived a really long life and there’s just a level of comfort and it’s going to be ok, you’re gonna manage, you’re gonna survive, so I was really just inspired by that. And then, honestly, I think my best friend’s a really big inspiration to me. Her name is Larissa. She’s just a really beautiful artist and has a way of seeing the world that I just — is so fundamentally good. She just sees a lot of beauty in people and even though she’s such a grump on the outside but then when you look at her art you realize how much she really loves people and I just was always really inspired by her.
Q: Has she ever painted you?
A: No, no, no. She does poetry and films, so yes, I am the subject of most of her films since we live together and it’s just like [I’m] the person who’s just laying around all the time.
Q: How do you define an ‘inclusion expert?’ You’re super inclusive the way you speak. How do you define inclusive or being an inclusive person?
A: I would say being inclusive is a deep respect for other human beings. I think that any time—what kind of happens nowadays is there’s kind of a level of trying to define exactly how—the exact ramifications that we’re supposed to treat people. You know what I mean? You can’t say this word. You can’t say that word. You can do this. You can do that. And I think fundamentally, you know how to be respectful to human beings, you know what I mean, you know. It’s not about any of that—you know when you’re not fundamentally respecting another human being’s life and what they’ve been through and who they are and you know when you’re doing it. So, I just think there’s a level of deep respect for what people have been through and who they are because that spreads through everything. That’s whether its minorities or people who are sick or women, it’s having a respect for their experiences and recognizing that it’s a different experience than yours but still respecting and honoring it and that’s just the broad umbrella of it all and underneath that there’s levels of how much is it enforced, how much is—it’s kind of based off each individual making a decision to do it and I think at the end of the day too, it’s up to the people who are being excluded to force people to see their humanity. And with allies of course and with everyone else helping—I think it’s—if you’re part of a minority group or you’re a woman whose been, you know, on the fringe of life your entire life, it is your responsibility to share your experience and to force other people to see you as being a full complex human being and that’s kind of how I think we breed respect by kind of demanding respect so I think that exclusion is on both sides. I think its people refusing to give each other decent human respect but it’s also individuals who have kind of been outcasts. It’s also on their end. There’s also a level they have to share their experience and they have to help other people who are not—they have to kind of show other people how to share their own humanity. So, it’s on both sides I’d say.
Photo Credit: Todd Westphal