- There are many misconceptions about people with disabilities and their relationships, including that they don’t need physical intimacy as everyone does.
- These three couples on YouTube are sharing their lives with the world to 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 their relationships.
- Caregiving, such as help with eating, washing, and using the bathroom, is a part of their routines, and they say it makes their bonds stronger, not weaker.
- They want others to see that they are just like other couples, but they also realize their differences and challenges are what make them extraordinary.
- Visit INSIDER’s homepage for more stories.
Shane Burcaw has hundreds of thousands of followers on his blog. He’s written three books and cofounded a successful nonprofit. But that doesn’t stop waitstaff from assuming his girlfriend is going to order his food for him.
“The crap I get in society has happened to me my whole life,” Shane told INSIDER, so he’s pretty much gotten used to it.
Shane and Hannah Aylward, his new fiancée, are an interabled couple: Shane has a condition called spinal muscular atrophy, a type of muscular dystrophy that means his muscles are incredibly weak, while Hannah is able-bodied.
This tends to mean strangers assume that 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 people with disabilities aren’t functioning members of society, Shane and Hannah make videos on their YouTube channel, Squirmy and Grubs, which has more than 420,000 subscribers.
“Squirmy and Grubs are our nicknames for each other,” Hannah said. “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, 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 started making videos because they thought it would be a fun hobby to document their lives. Plus, Shane already had hundreds of thousands of followers on 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 started growing 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,” Hannah said.
“We’re more focused in our message nowadays,” Shane added. “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 in the morning and to bed at night, as well as helping with things inbetween like washing, eating and drinking, and using the bathroom. Shane’s condition means he can’t do these things himself.
But other than the extra help, they’re like any other couple — and 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,” Shane said. “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.”
One particular area of curiosity is what goes on in their bedroom. Shane said this is probably because a lot of people assume that having a disability means there’s no possibility of intimacy.
Shane and Hannah don’t talk explicitly 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 that sex is as important to their relationship as anyone else’s.
“People comment and say, ‘I could never do that, because I need a sex life,’ stuff like that,” Hannah said. “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.”
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 lives. But they also experience some hate and negativity, the curse of the public eye.
They said they receive messages from people who say their relationship is fake and who can’t comprehend the idea of caregiving and intimacy existing in the same universe.
“We would have to be tricking our entire families,” Hannah said, alluding to one of the weirder conspiracy theories about her choosing to be with Shane: that his family is on the Forbes list.
“People also use the fact that I’ve written about previous girlfriends as, like, evidence that all of this is fake,” Shane said. “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.”
Shane said that he struggled with a burden complex for most of his life but that with Hannah he no longer feels as if caring for him will scare her away. He said that in the beginning he overapologized 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.
“All those comments say is that there are still uninformed people out there, and so that’s more reason for us to help them,” Shane said.
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 spreading the story of their interabled relationship with their YouTube channel, Roll with Cole & Charisma, which has about 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 in his fingers. So while Cole can move his arms and get around by himself in his wheelchair, Charisma is also his caregiver.
Like Shane, Cole shows people how he lives his life, 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, Cole said. Many have said that before watching Cole and Charisma’s videos they feared that 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 after his injury, which happened when he was only 16. He said he didn’t date for a long time because he didn’t have the confidence that he would 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.”
Cole said that before his injury, all he did was “chase after girls.” But he lost that after the accident, possibly because a lot of a teenage boy’s masculinity is tied up in 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 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 in Virginia at the Sheltering Arms center, 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, as it is for every couple.
With interabled relationships, it’s much more likely that a breakdown in honesty and trust, rather than the extra work of caregiving, will signal the end.
No relationship is perfect, and interabled couples also experience tough times, though their challenges are more likely to include problems with finding somewhere accessible to live, worries about insurance costs, and some extra planning.
That’s why when Dr. Phil said on his show earlier this year that “100 out of 100” relationships that involve caregiving will fail, Cole and Charisma decided to speak out with a video titled “ Dear Dr. Phil, #100outof100.” They asked other interabled couples to send in their videos explaining why they were “one of the hundreds that will not fail.”
“I couldn’t believe it when I heard that,” Cole said of Dr. Phil’s comment. “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 said that rather than dooming them to fail, caregiving makes a couple’s bond 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 Ortiz attempted to take his own life and shot himself in the chest. He told his story in an emotional YouTube video in November.
He’s now incredibly happy with his fiancée, Kassandra Garibay, who helps him with caregiving as he is paralyzed from the waist down and uses a wheelchair. They post videos of pranks and challenges, as well as vlogs of their daily life, on their YouTube channel, The Life of K&K, which has more than 36,000 subscribers.
Kevin and Kassandra dated in high school but broke up when Kassandra moved back to California after graduation. Years later, after Kevin’s accident, they reconnected. Kevin said he believes Kassandra is the one who got him out of his “funk” and back to the person he is. Now they are planning to get 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.”
After he came out of the hospital, Kevin struggled with wanting to leave the house. He said that 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 information. That’s 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 she wants people who watch their videos to realize that an interabled couple can do what any other couple can do — go to the movies, visit the beach, and have 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 hold 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. People in interabled relationships are attracted to each other for the same reasons anybody is, like a good sense of humor, shared values, a nice smile, or an enviable drive to succeed.
Hannah emailed Shane late one night because she saw a YouTube video about him on the channel SoulPancake — a strange decision, she said, because she normally never 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 said that he responded because Hannah “had a way of phrasing everything that I was just completely, immediately in love with,” and that since then he has fallen further in love with her wit, her sarcasm, and the fact they never get tired of each other.
“And she’s able to lift me,” he said with a laugh.
For Cole and Charisma, it was their 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,” Cole said. “I can just sit in the house all day and read and 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 2012 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 OK 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,” Charisma said. “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 that their relationship is extra special in a lot of ways because of what they go through — and that 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.'”
٪٪ مورد_read_more_button ٪٪