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18-7-2019 16:56:35

Meet the interabled YouTuber couples teaching viewers that people with disabilities need love, sex, and intimacy like anyone else

There are many misconceptions about disabled people and their relationships, mainly that they don’t need physical intimacy like everyone else does. These three couples on YouTube are sharing their lives with the world to try and fight the ignorance around interabled relationships. Squirmy and Grubs, Roll with Cole & Charisma, and The Life of K&K share videos with their subscribers about their daily life, and answer questions from viewers about how their relationships work. Caregiving, such as help with eating, washing, and using the bathroom, is a part of their routines, and they believe it makes the bond between couples stronger, not weaker. These couples want others to see they are just normal couples, but they also realize their differences and challenges are what makes them extraordinary. Visit INSIDER’s homepage for more stories. Shane Burcaw has hundreds of thousands of followers on his blog, has written three books, and co-founded a successful non-profit. But that doesn’t stop waiting staff assuming his girlfriend is going to order his food for him. “The crap I get in society has happened to me my whole life,” said Shane when he and his new fiancée Hannah Aylward spoke to INSIDER, so he’s pretty much gotten used to it. Shane and Hannah are an interabled couple – Shane has a condition called spinal muscular atrophy (SMA), a type of muscular dystrophy that means his muscles are incredibly weak, while Hannah is able-bodied. This tends to mean strangers assume Hannah is Shane’s nurse, and that he can’t think or speak for himself. In public, this means he’s often handed children’s menus and laughed at when he asks for a beer. To fight the illusion that disabled people aren’t functioning members of society, Shane and Hannah make videos on their YouTube channel “Squirmy and Grubs” which has 420,000 subscribers and counting. “Squirmy and Grubs are our nicknames for each other,” explained Hannah. “We’ve had them since really early on in our relationship. I’m Squirmy – Shane called me that because I squirm around in bed a lot when I’m sleeping. I just move a lot and that annoys him.” “That’s an understatement,” said Shane, who has been nicknamed Grubs because of his “sweaty hand problem.” Shane and Hannah’s story: ‘She helps me lift my beer to my mouth – but it doesn’t take away from the love’ Shane and Hannah originally started making videos because they thought it would be a fun hobby to document their life. Plus, Shane already had hundreds of thousands of followers of his blog “Laughing at My Nightmare,” which is also the name of his first book of autobiographical essays. So he figured people were curious enough to watch. But when the channel really started to grow beyond what they ever thought it would, Shane and Hannah had to think more about what they wanted people to take away from their videos. “It really became normalizing our kind of relationship and showing that people with disabilities can have happy successful lives,” said Hannah. “We’re more focused in our message nowadays,” added Shane. “We want to make sure we’re giving off a good message about disability.” Hannah is Shane’s primary caregiver, meaning she helps him get up, washed, and use the bathroom in the mornings and assists him with eating and drinking. Shane’s disease means he can’t do these things himself. But other than the extra help, they say they’re just like any other couple. That’s what they hope people see in their videos. “There are a lot of stigmas and misunderstandings of disability in our society, and a lot of that comes from a lack of experience with it,” said Shane. “We do things a little bit differently – like she helps me lift my beer to my mouth – but it doesn’t take away from the love, and the adventure, and the excitement of our life.”Read more: The world’s biggest YouTube stars told us they’re burning out because of the unrelenting pressure to post new videos One area of particular curiosity is what goes on in their bedroom. Shane said this is probably because a lot of people assume having a disability means no possibility of intimacy. Shane and Hannah don’t explicitly talk about their sex life too much on their channel, as it’s nobody else’s business. But in Q&As and in Shane’s books, it’s clear sex is as much an important part of their relationship as anyone else’s. “People comment and say ‘I could never do that because I need a sex life,’ stuff like that,” said Hannah. “People think that when you have a disability, you can’t have sex, or don’t want to, or whatever.” In Shane’s book “Strangers Assume My Girlfriend is My Nurse,” he talks about the ways they get around the obstacles of sex to find a way that’s effective and enjoyable for them. Quite simply, they “make it work.”Foto: Just two of the many international trips Shane and Hannah have taken together.sourceSquirmy and Grubs The Squirmy and Grubs channel is predominantly a positive place with thousands of people commenting on how much they enjoy watching Shane and Hannah’s daily life. But they also experience the curse of the public eye with some hate and negativity. They also receive messages from people who believe their relationship is fake because they can’t comprehend the idea of caregiving and intimacy existing in the same universe. “We would have to be tricking our entire families,” said Hannah, referring to one of the weirder conspiracy theories about her choosing to be with Shane – that his family is on the Forbes rich list. “People also use the fact that I’ve written about previous girlfriends as like evidence that all of this is fake,” said Shane. “As if I’ve been planning it. Like, I’m going to hire a series of women to pretend to be with me, then I’m going to move to Minnesota and live with one of them, then propose to her.” View this post on Instagram She said yes, and I’m now officially the happiest guy in the world. I love you @hannahaylA post shared by Shane Burcaw (@shaneburcaw) on Jun 15, 2019 at 6:33pm PDT Shane said he struggled with a burden complex for the majority of his life, but with Hannah, he no longer feels like caring for him is going to scare her away. In the beginning, he over-apologized for needing her help, but after three years of Hannah being “amazingly reassuring,” he’s let the complex go. “People in my life before had been like ‘don’t worry, this isn’t bothering me,’ and it never really felt like the truth,” Shane said. “But with Hannah it did. And I feel much more comfortable with my disability in the three years that I’ve known Hannah, and I owe a lot of that to her.” So rather than letting the negativity in the comments get them down, Shane and Hannah use it as motivation to continue to challenge the ignorance that’s still around. “All those comments say is that there are still uninformed people out there, and so that’s more reason for us to help them,” said Shane. Cole and Charisma’s story: ‘Being a man is not about your body and what you can do physically – it’s a lot more than that’ Cole Sydnor and Charisma Jamison are also helping spread the story of their interabled relationship with their YouTube channel “Roll with Cole & Charisma,” which currently has 170,000 subscribers. Cole jumped into Virginia’s James River in 2011, shattering his vertebrae and severing his spinal cord. This resulted in quadriplegia, meaning he is paralyzed from the chest down, and doesn’t have any function of his fingers. So while he can move his arms and get around by himself in his wheelchair, Charisma is also his caregiver. Like Shane, Cole shows people how he’s living life to the fullest by going on adventures and trying things he didn’t do even before his injury. “I think people also assume that because I have a disability, everything is like exponentially more difficult, and that we’re not able to do a ton of things,” Cole told INSIDER. “There may be a degree of truth to that, but the bottom line is we’re able to do almost everything we want to do and it’s not too much more difficult.” It just takes a bit more planning, he said, “but it doesn’t detract from the quality of our lives at all.” One of the best parts of sharing their lives is the messages they get from others, especially young people who have had a spinal cord injury themselves, Cole said. Many of them say before watching Cole and Charisma’s videos, they feared dating was too difficult, and finding love was impossible. “Because they had watched our videos and seen the love in our relationship, and what we have for each other, they were motivated or inspired to go out and put themselves out there again and knew that one day they’ll be able to find someone themselves,” Cole said. “I mean, that’s beautiful. That’s what you want to see.” Cole struggled with these feelings himself after his injury, because he was only 16 when it happened. He said he didn’t date for a long time, because he didn’t have the confidence that he was going to be attractive to somebody. “It wasn’t something that I focused on, and just wasn’t something that I prioritized,” he said. “So in that sense, I just kind of repressed it, and I didn’t feel like I was missing out on anything.” View this post on Instagram Finally, we got to hangout with Shane and Hannah! Congrats to this awesome couple on their engagement and all of the amazing opportunities they have coming up! • • • #interabled #100outof100A post shared by Cole & Charisma (@roll.with.cole) on Jun 22, 2019 at 5:18pm PDT Before his injury, Cole said all he did was “chase after girls.” But this was something he lost after the accident, possibly because a lot of a teenage boy’s masculinity is tied up their athleticism and physique. “When you have a spinal cord injury, both of those things are rapidly lost, and so in a sense, you feel like your masculinity is as well,” he said. “When you grow up a little bit, you mature some and you realize being a man is not about your body and what you can do physically – it’s a lot more than that.” He finally reached that point shortly before he met Charisma, he said, and was “able to gain that confidence back to go and find a beautiful woman.” Cole and Charisma want to spread as much positivity as they can, but unfortunately, that doesn’t make them immune to strangers’ assumptions about them. “People either say ‘oh Charisma you have such a big heart, you’re such an angel,’ but I don’t have a bigger heart than anyone else because I decided to be with Cole,” Charisma said. “He’s a person first and I see him as a man, not as a wheelchair. It’s just a really weird comment to me.” Cole met Charisma when she was working at Sheltering Arms hospital in Virginia, which treats people who need rehabilitation after spinal cord injuries and strokes. Charisma believes this helped her understand Cole’s injury better, but with everything else she wanted to know, she simply asked him. Communication is vital, just as it is for every couple. With interabled relationships, it’s much more likely a breakdown in honesty and trust is going to signal the end than the extra work that comes with caregiving. No relationship is perfect, and interabled couples experience tough times like any other. It’s just that their challenges are more likely to include problems about finding somewhere accessible to live, worries about insurance costs, and some extra forward planning.Read more: People are sharing photos proving that you can be ‘disabled and happy’ – and the internet is loving it That’s why, when Dr Phil stated on his show that one hundred out of one hundred relationships that involve caregiving will fail, Cole and Charisma decided to speak out with a video “Dear Dr. Phil, #100outof100.” They asked other interabled couples to send in their videos declaring why they were “one of the hundreds that will not fail.” “I couldn’t believe it when I heard that,” said Cole. “Being entrenched in the community as we are, we know so many successful relationships that involve caregiving. And I just couldn’t believe he said it.” They explained that rather than being doomed to fail, they believe caregiving makes a bond between a couple stronger. “How can you deny a woman is dating someone with a disability when she is standing there, with happy tears sliding down her face because she was just proposed to,” Cole said. “There’s no denying that love.” Kevin and Kassy’s story: ‘I got her back 100% like I know she’s got mine’ In 2012, Kevin Oritz attempted to take his own life and shot himself in the chest. He told his story in an emotional YouTube video in November 2018. Oritz survived, and now lives incredibly happy with his fiancée Kassandra Garibay, who helps him with caregiving as he is now paralyzed from the waist down and uses a wheelchair. The couple make videos of pranks, challenges, and vlogs of their daily life on their YouTube channel “The Life of K&K,” which has 36,000 subscribers. Kevin and Kassandra dated in high school, but broke up when Kassandra moved back to California after graduation. A number of years later, after Kevin’s accident, they reconnected, and Kevin believes Kassandra to be the person who got him out of his “funk” and back to the person he is. Now they are planning on getting married. “The way she gets me out of my comfort zone makes me happy,” Kevin told INSIDER. “We know 100 out of 100 times I can count on her. And vice versa, I know she can count on me. “I got her back 100% like I know she’s got mine.” View this post on Instagram How many Rubber Bands can pop a Watermelon 🍉?🤔A post shared by 🌌🌌KevPlayTooMuch (@kevplaytoomuch) on Jul 4, 2019 at 12:04pm PDT After he came out of hospital, Kevin struggled with wanting to leave the house. He said during this time his mind was his “own worst enemy.” “You might not want to go places, you might not want to do things. I’ve been there,” he said. But slowly, Kassandra encouraged him to try more and more things, and he eventually caved. Now they can’t stop traveling and looking for something new. “When you can actually do all this, you think you can’t do it,” he said. “But in reality, you probably just have never tried it.” When he was learning more about being in a wheelchair, Kevin turned to YouTube to find out more information. He said this is what he hopes others do with his videos. “It really worked for me,” he said. “So it’s pretty much like passing on that knowledge to people who can use it also.” Kassandra said women often get in touch with her with questions too, asking about what it’s like dating someone in a wheelchair. “They give me their little story, and I respond to them, and it’s kind of crazy because they contact me and just let me know,” she said. “It’s just cool to connect with people in the same kind of relationship.” She said by watching their videos, she wants people to realize an interabled couple can do what any other couple can do – going to the movies, visiting the beach, and having a fulfilling, intimate relationship. “You shouldn’t look at it any different from another couple,” she said. “Because at the end of the day it’s about being in a relationship and being with someone who you love.” Kevin and Kassandra agree that communication is what makes their relationship work. Kevin said he always tries to say what’s on his mind rather than holding it in. “I find it’s better to talk it out and express yourself,” he said. “She’s the person I want to be with for the rest of my life, so I should feel comfortable sharing everything with her.” ‘I just feel grateful. I feel grateful to have you’ As the saying goes: you never know who you’re going to fall in love with. Couples in interabled relationships are attracted to each other for the same reasons anybody is – a good sense of humor, shared values, a nice smile, or an enviable drive to succeed. Hannah, for example, emailed Shane late one night because she saw a YouTube video about him on the channel SoulPancake. A strange decision, she said, because she never normally does things like that. “I think it was his sense of humor,” she said. “He seemed really smart and he was really funny and he was talking about things that I found interesting. Then I looked at his blog and saw he was an amazing writer so I was reading that for about an hour before I emailed him.” Shane responded because Hannah “had a way of phrasing everything that I was just completely immediately in love with,” and since then has fallen in love with her wit, sarcasm, and the fact they never get tired of one another. “And she’s able to lift me,” he laughed.Read more: The whirlwind romances and breakups of YouTube stars fuel our appetite for increasingly extreme and dramatic online entertainment For Cole and Charisma, it was their shared desire to be positive that brought them together. “Charisma is always pushing me out of my comfort zone, and that’s something I really needed,” said Cole. “I can just sit in the house all day and read be content, but that doesn’t mean I’m living a full life. So Charisma helps me to live that full life.” Kassandra said she is simply happy that she gets to do things with Kevin because she knows he could have died in 2011, and she never would have gotten the chance to find him again. “I just love sharing those experiences with you, because he’s just the best,” she said. “It’s just fun to have you along and live life … I just feel grateful. I feel grateful to have you.” Not ordinary, but extraordinary There’s a joy to be found in realizing its okay to be different. Cole and Charisma, when asked if they want to be seen as a normal couple, said they think it’s fine to have labels like “interabled.” “I think this society tries to be so politically correct and not give people labels, but that makes it sound like it’s such a bad thing, and it’s not,” said Charisma. “Because with these labels we’re able to bring people in those situations to our channel and help them learn.” Cole added that being afraid to mention what’s different about their relationship can sometimes detract from what makes it special. “I have no shame in my disability, I’m proud in my disability, and I’m immensely proud of Charisma and our interabled relationship,” he said. “I’m proud of all of it.” He said their relationship is extra special in a lot of different ways because of what they go through, and if anything, that should be celebrated. “So sometimes it bothers me when people say you’re just normal people,” he said. “I say, well, I think we’re pretty extraordinary.”The post Meet the interabled YouTuber couples teaching viewers that people with disabilities need love, sex, and intimacy like anyone else appeared first on Business Insider Nederland.
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