YouTubers Show What It's Really Like to Be an "Interabled" Couple
| LAST UPDATE 03/06/2022
Strange glares and weird reactions are things that Shane Burcaw and Hannah Aylward are no strangers to. The young couple always knew their relationship was unique, as Hannah is able-bodied and Shane uses a wheelchair. Still, the challenges that life would bring proved to be a lot more than they anticipated...
A Midwestern Baby
Hannah Aylward was born on December 12, 1995, in the city of Minneapolis, Minnesota. The young woman is of Polish descent and the child of two loving parents, George and Liz Aylward. She also grew up with two older brothers or, as Hannah joked, two "quite elderly" brothers.
Aylward publicly shared her love for her family, calling Liz the "best mom and friend" in the world. Speaking about her father, she also praised him for "always being there to make [her] laugh." The tight-knit family had supported Hannah in all of her adventures, but they could never have predicted who her journey would lead her to.
She Became a Dedicated Swimmer
As a young girl, the Midwesterner partook in a few different sports, including gymnastics. But one sport, in particular, stole her heart. The innate athlete began swimming year-round at the age of five and didn't stop for eighteen years. "I can't describe how grateful I am for this sport and for the people it has connected me to," she said.
"It gave me my best memories and my worst memories," continued Aylward. "It provided me with the biggest successes and my biggest failures. Most importantly, it introduced me to my best friends." Swimming was a constant passion in Hannah's life. It brought her so much joy, even when she struggled with some intimidating changes.
Graduating High School
After growing up in Minneapolis, Aylward had a change of scenery and moved over 1200 miles to the other side of the country. Being a student at the time, she moved to the east coast and studied in New Haven, Connecticut for part of high school.
But Hannah struggled with her formal education. The young girl didn't feel connected to her high school and ultimately decided homeschooling was a better fit. After graduation, Aylward continued to grapple with her sense of belonging and was not ready for university. Instead, she embarked on a daring gap year.
Traveling the Globe
The high school graduate traveled the globe and visited the likes of Poland, Croatia, and the Canary Islands. After fulfilling her wanderlust traveling through Europe and Asia, Aylward finally felt ready to begin her secondary education. She started her freshman year of college in the fall of 2015 at Carleton College.
Hannah continued to be a dedicated swimmer throughout college. The athlete swam with the varsity team at Carleton until February 2019, when she partook in her last competition. Little did Hannah know that she would soon be balancing more than her sport and studies.
The Ultimate College Student
The 19-year-old had an interest in humanities as she entered college. The impassioned student eventually decided to major in Sociology and Anthropology. However, her studies went beyond the books, as what Hannah had learned in class influenced and shaped the way she viewed the world.
"My sociology classes and professors provided me with a framework for understanding society and discrimination that I didn't have before coming to Carleton," she shared. As she focused on her school work, Aylward could have never imagined that her studies were about to lead her to the love of her life.
An East Coast Baby
Over 1000 miles away and a few years earlier, Shane Burcaw was born in 1992 in the city of Bethlehem, Pennsylvania. Shane grew up surrounded by his affectionate parents, Susan Varga and Jon Burcaw. He also lived with his brother, Andrew, who doubled as a partner-in-crime.
In many aspects, Burcaw had a normal life growing up. He had a close relationship with his family, he and his brother were "constantly getting [themselves] into stupid shenanigans." But his loving family couldn't fathom what laid ahead for all of them, and especially for Shane.
Something About Him
Shane was an adorable and complacent baby, but his parents soon had reason to worry. When he was nine months old, the infant was happy to sit wherever his caregivers put him down. But at this time, other babies his age were beginning to crawl. Still, Burcaw wasn't showing any indication of arriving at that milestone.
Susan and Jon were worried when they noticed their child wasn't displaying the same motor skills as others. The concerned parents were quick to take Baby Shane to the doctor. After many exhausting studies and tests, the family received a grave diagnosis that would change their lives forever.
Receiving a Diagnosis
Shane Burcaw was diagnosed with spinal muscular atrophy (SMA). SMA is a genetic condition that inhibits muscle development. According to Families of SMA, the disease destroys the nerves controlling muscle movement, making it difficult or impossible to crawl, walk, and maintain control of the head and neck.
As Shane explained, "In other words, I'm a shriveled mess of barely functioning limbs." There are various types of SMA and each kind has a different life expectancy. Burcaw explained that growing up, he did not expect to live past the age of thirty. Yet that wasn't the only unorthodox part of his childhood.
An Unconventional Childhood
After being diagnosed, Burcaw's muscle movement continued to worsen. The toddler began using a wheelchair when he was two years old. Growing up, Shane needed help with many daily tasks and struggled to do routine-based things independently.
Burcaw relied on his parents and brother for assistance. His family helped him with getting in and out of bed, brushing his teeth, getting dressed, and more. Being so reliant on others ultimately harmed Shane's self-image as he craved to be more independent.
Struggling With Low Self-Esteem
Early in life, the young boy was haunted by the life expectancy for his disease. "Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process," he explained.
He also grappled with his appearance, saying "My biggest concern was minimizing my disability for the sake of appearing 'normal.'" Shane's desire to look different lowered his self-worth and he searched for a healthy outlet that could help him. Burcaw had no idea that the hobby he chose, would one day lead him to his first love.
He Became a Blogger
In May 2011, Shane decided to begin writing a blog. He "had a few ridiculous stories" about living with SMA and wanted to share the humor he finds in his adversity. The blog, titled Laughing At My Nightmare, became a place where Burcaw shared his experiences as a disabled person and the hardships he overcame.
His blog soon had hundreds of thousands of followers. Months after it began to grow in popularity, the writer started a nonprofit organization to provide "Vital equipment to people living with muscular dystrophy diseases." But Shane didn't know that his nonprofit was one of the many good things that would come from his blog.
She Was Crushing First
As Laughing at My Nightmare grew, so did Burcaw's career as a disability activist. Managing his nonprofit, which he co-founded with his cousin, became a full-time job. Then in 2014, he gathered stories from his blog as well as new ones and published them in a book titled Laughing at My Nightmare.
Soon, the published author was traveling the country to speak about his disability and raise awareness of the genetic disease. In 2013, "The Office" actor, Rainn Wilson produced a short documentary about Burcaw. It was this film that ultimately brought Shane and Hannah together.
It All Started With An Email
Thousands of miles away from Pennsylvania and three years after the film was released, Hannah Aylward came across the documentary. She watched the short movie and went on to explore Shane's blog. The college student became enamored by the blogger's sense of humor and decided to take a chance by sending him an email.
"I could just tell that we were gonna get along," Hannah said. "He was writing about his travels and swimming and... the things that I loved so much so I just thought we would get along really well." The email ended with a "P.S. I think you're cute," which caught Shane's attention.
It Was What She Didn't Say That Caught His Eye
At the time Hannah sent her first email, her crush was already receiving a lot of messages from people. "All of them comment on how inspiring I am to overcome such a terrible disability," said Shane. However, none of the messages stood out to him the way Aylward's did.
Burcaw explained that a lot of people don't understand him and that "Life with a disability can be beautiful and adventurous." His admirer's note stood out because she "made no mention of [his] wheelchair... or the fact that [he] was an inspiration." It didn't take long for the pair's communication to intensify.
1 Long Distance Relationship, 1 Concerned Family
After that first email, the two became virtually inseparable- literally. They quickly took their first big relationship step: Moving from email to texting and calling. Which Shane says, they did "an ungodly amount" of FaceTiming. After just two weeks of online dates, the two crushes had already said, "I love you."
While their daughter was falling in love, the Aylward family was concerned. "Mostly about [her] talking to a stranger on the internet, and not his disability." But after her parents FaceTimed with Shane, Hannah said, "They loved him." With her family's approval, the duo excitedly moved their relationship forward.
Meeting Face-to-Face for the First Time
After three and a half months of 8-hour calls and endless texting, the couple finally met in person. Hannah traveled from her home in Minnesota to Shane's home in Pennsylvania. But their first meeting was off to a rough start when Burcaw and his brother were 45-minutes late to pick her up from the airport!
Unable to really greet each other until they arrived home, Alyward saw her boyfriend's face for the first time while simultaneously meeting his parents! When they finally had their first kiss, Shane's hands were "dripping in [his] lap" from nerves. This trip was just the first of many that would take place over the next two years.
Moving In Together
The love bugs were long-distance for two years. The couple said the hardest part of living far from each other was "not being able to help each other," especially when one of them had a hard day. At the time, Burcaw was focusing on his blog and nonprofit, while Hannah was still in college.
The pair did not want to wait until after her graduation to live together, so two years after they met, the couple decided to end the long-distance. Aylward shared, "We met in 2016 and then he moved to Minnesota and we moved in together in 2018." But moving in together would prove to be a complicated endeavor.
She Had To Become His Caretaker
For this happy couple, moving in together meant more than decorating an apartment and becoming familiar with each other's quirks. Shortly after he moved to Minnesota, Shane's parents gave Hannah the role of being their son's primary caregiver.
Becoming her partner's caretaker meant doing things from lifting her boyfriend in and out of bed, to brushing his teeth and itching his eye. Although Hannah had previously helped take care of Shane, would she be able to take on the role full-time, while still in college?
Balancing College, Swimming, and Care-Giving
When they moved in together, Aylward was a full-time student in a rigorous major and a varsity-level college athlete. Yet she seamlessly took on her third role as her partner's caretaker. Liz, Hannah's mom, said, "I've never seen her complain about it or get tired of it."
Before going to class, she set Shane up with his laptop and a snack so that he could work. If she went out with friends, she came home early to help Shane get into bed. The couple viewed the care taking as another way of hanging out and having fun. Unfortunately, outside of their home, things did not always go as planned.
Adventures Gone Wrong
Since getting together, the two lovebirds went on endless adventures together. But their experiences exploring the world were at times unpleasantly interrupted. Hannah shared that once at a restaurant, Shane asked for the check while she was in the bathroom. She was shocked to see what happened next.
"When I got back... [the waitress] said 'He asked for the check, is that okay?' So it's just people assuming that he isn't capable of doing things," she said. But the negative interactions only encouraged the loving couple to strive for something bigger than they could both imagine.
Starting a YouTube Channel
The loving duo took their frustrations and channeled it into a YouTube channel. The "interabled" couple said, "Shane's disability plays a huge role in our relationship, but not in the way that most people expect." They hoped that by showing the ins and outs of their lives, people's perception of their relationship would change.
Instead of being viewed as peculiar, they hoped the audience would "watch [them] navigate [their] life together and laugh with [them] along the way." However, putting their lives on display proved to be more difficult than they expected.
The Hardest Part of Their Relationship
When asked what the hardest part of their relationship is, the couple had two answers: family and YouTube. Shane said "All my family lives on the East Coast... and I live out [in Minnesota]... it's just tough to have your families in two very different locations." But even harder than family distance, was managing their channel.
"Working together... on a YouTube channel is a challenge and requires a lot of communication," said the advocate. Hannah added that remembering they are "partners before business partners" was very important. But there was another challenge they would soon face: The wrath of the internet.
Conspiracy Theories About The Couple
As Hannah and Shane's YouTube channel gained popularity, not everybody celebrated the couple's relationship. Some YouTubers argued that Aylward was a gold-digger, saying that she was with Burcaw for his disability benefits (which, the couple clarified on numerous occasions, he does not receive).
The naysayers continued to conspire and made serious accusations against Hannah. One follower wrote to Shane, “If you’re using non-stick pans and you're cooking… you might wanna be careful because Hannah may be scraping shavings off of the inside and poisoning you.” Sadly, this wasn't the only negativity the couple received.
Dealing With Public Opinion
"A really common comment that we receive is something along the lines of 'Shane is destroying Hannah's life' or 'Hannah has sacrificed her entire life,'" explained Hannah. One user wrote, "As a parent I would find it hard to see my daughter go through life as she does."
However, Shane explained that, "The idea of someone... like me... dating this intelligent, beautiful, able-bodied woman," is shocking to people because of the "misperception of disabilities as 'less than.'" Despite the negative backlash, the couple always tried to focus on what mattered most to them.
Hannah Was Accused of Using Him for Publicity
Some watchers feared that Hannah was using her relationship with Shane to gain publicity. Followers argued that making their love story so public was suspicious. The couple's apparent transparency caused some concern that Aylward was enjoying the attention.
It's no secret that the internet wouldn't hold back on sharing their opinions about the couple. Of course, they faced a lot of negative backlash. Their unique relationship was getting a lot of exposure thanks to their channel and brought about a fame the couple never could have expected.
Some Positive Reactions
As the couple's fan-base continued to grow, many of their 700k subscribers were inspired by their love story. A lot of users didn't see Hannah's role as an act of pity. "I don't see sacrifice at all," wrote a fan. "I see a girl who found the person who makes her happy in life."
Another user commented, "Hannah IS an amazing person, but not because she's in this relationship. It's because she is a great human being. Period." However, the daily barrage of opinions were the least of their worries. Shane's condition presented the couple with some tests of strength.
A Life-Changing Treatment
While Shane wanted to show viewers that disabled people can live contently, he also shared his difficulties. "I will lose more and more function... it affects breathing as well," the activist said. "That's why people with SMA have to worry about respiratory illness... and many of them, until recently, passed away early in life."
Over two years ago, Burcaw took to Youtube to reveal that he had undergone another procedure. The treatment, called Spiranza, was the first-ever remedy for SMA. Spiranza helped Shane feel "Stronger and better than ever." But just as he and his partner became hopeful, the pandemic had other plans for him.
Losing Access to the Life-Saving Medicine
Spiranza increased Shane's life expectancy, but along with the exhilaration of the improvements came a new worry. Shane said that Spiranza is "incredible but also terrifying. So much of my future stability... are hinged upon my ability to continue receiving this drug." This fear became real when Corona put his procedure on hold.
Fortunately, after a few worrisome months, he was able to receive access to a different drug. "The changes so far have been very gradual," expressed Shane. Yet the panic induced by the loss of treatment didn't stop Burcaw from making his commitment to Hannah more official.
First Comes Love, Then Comes Marriage
June of 2019 was an exciting month for Hannah. The college alum graduated from Carleton College and she became engaged to the love of her life! As she and Shane celebrated her accomplishments along with the rest of the family, Burcaw popped the big question. Not surprisingly, she said yes!
The duo tied the knot on September 4th, 2020, with an intimate wedding officiated via Zoom. "It wasn't the big gathering we had always planned on having, but it was perfect." wrote Hannah on Instagram. Now that the two were bound by law, they wondered if it was time to make their family bigger.
Then Comes the Baby in the Baby Carriage
Do the newlyweds want to have kids? Definitely! They discussed it a lot as they will need to plan for someone to take care of Shane when Hannah is with child. "We want to have all our ducks in a row so that when we decide like 'alright, let's do it,' we're ready," said Burcaw.
When the author asked his wife if he will make a good father, she answered "Yes, of course... But I think you're probably gonna be the fun parent and I'm gonna be the serious parent." But as the couple thought more about a family of their own, there was one more question they needed an answer to: Would their child have SMA?
"If Hannah Has That Gene, There Is a Chance They'll Have It"
The Burcaws decided that the future mom should get genetic testing for SMA. "If Hannah has that gene, there is a chance they'll have it," explained Shane. "I wouldn't mind if they had SMA because I have SMA and I live a fantastic life," he later clarified.
As it turned out, Mrs. Burcaw isn't a carrier of the condition. Nonetheless, it's clear Shane came a long way from the young boy struggling to love himself. He said, "I'm less concerned with fitting in, and becoming more passionate about embracing my disability."