Shane Burcaw: A Journey Through Advocacy, Love, and Accessible Travel

In the latest episode of Travel Talk with Joy, Joy—a seasoned traveler and advocate for accessible travel—sat down with Shane Burcaw. If you've been involved in the disability space, you probably know who he is.

A prominent disability advocate, writer, and co-creator of the popular YouTube channel Squirmy and Grubs, Shane shared his remarkable journey of living with spinal muscular atrophy (SMA), navigating relationships, and using his platform to break down barriers and advocate for accessibility.

"We want people to realize that living with a disability isn’t a tragedy." - Shane Burcaw

Understanding Spinal Muscular Atrophy (SMA)

Shane Burcaw was diagnosed with SMA at a young age, a neuromuscular condition that causes muscle weakness. He began using a motorized wheelchair at just two years old and has since adapted to a life that requires daily physical assistance. Despite the challenges, Shane approaches his condition with humor and resilience.

“I can operate my wheelchair, use my phone, and even play video games—all the important stuff,” Shane quipped. Though he faces significant physical limitations, he shared how recent advancements in SMA treatments have offered him a new lease on life.

Life-Changing Medical Advancements

For most of Shane’s life, SMA was a progressive condition, expected to worsen over time. However, groundbreaking treatments have emerged in recent years to slow its progression. Shane’s decision to begin treatment came with emotional and logistical challenges, from the complexity of spinal injections to insurance hurdles.

“Initially, I didn’t even know if I wanted treatment,” Shane admitted. “I loved my life as it was, but the medication has given me consistency and strength I never expected.”

The Love Story of Shane and Hannah

Shane and his wife, Hannah Aylward, are the creators behind Squirmy and Grubs, a YouTube channel documenting their interabled relationship and everyday life. The couple met when Hannah emailed Shane after watching a documentary about his nonprofit, Laughing at My Nightmare.

“Her email didn’t focus on my disability—it focused on our shared humor and interests,” Shane recalled. What started as a simple exchange quickly evolved into a deep connection. Their relationship dispels myths about interabled couples, showing that love is about partnership and mutual respect.

Advocacy Through Storytelling

A central theme in Shane’s life is using humor and vulnerability to challenge misconceptions about disabilities. From sharing humorous accounts of accessibility struggles to publishing books that dive deep into the nuances of life with SMA, Shane believes in the power of storytelling.

“We want people to realize that living with a disability isn’t a tragedy,” Shane explained. “Through humor, we can make difficult topics approachable and spark meaningful conversations.”

Challenges and Joys of Accessible Travel

Traveling is one of Shane and Hannah’s greatest passions, but it comes with unique challenges that require meticulous planning. One of the biggest obstacles Shane faces is flying with a power wheelchair—he is unable to sit in a standard airline seat without support. To solve this, they bring a child’s car seat retrofitted with straps and supports to keep him upright during flights.

Additionally, the risk of wheelchair damage is a constant concern. Since his motorized wheelchair must be stored in the plane’s cargo hold, they remove detachable parts, tape instructions to the chair, and bubble-wrap key components to prevent damage. Still, traveling often feels like a gamble, with some flights going smoothly while others result in issues with his chair.

Despite these challenges, Shane emphasizes that traveling is worth the risk. Experiencing new cultures, trying new foods, and meeting people from around the world make the difficulties secondary to the joy of exploration. With careful preparation, accessible travel is possible—especially with resources like Wheel the World, which helps them navigate destinations with verified accessibility information.

“Traveling is worth the risk,” Shane said. “Experiencing new cultures, food, and people is what makes life so exciting.”

Laughing at My Nightmare: Giving Back to the Community

Shane’s nonprofit organization, Laughing at My Nightmare, provides adaptive equipment and academic scholarships to individuals with disabilities.

Key Programs:

• Equipment Grant Program: Over $1 million in adaptive and medical equipment has been distributed to those in need.
• Scholarship Program: Full-ride academic scholarships for students with disabilities pursuing higher education.

“Through these programs, we hope to create a more equitable and supportive environment for people with disabilities,” Shane shared.

Inspiring Others and Looking Ahead

As Shane and Hannah continue to share their lives with millions, they hope to inspire others to embrace their own stories and advocate for change. Their upcoming book, Interabled Love Stories, highlights the relationships of interabled couples around the world, further challenging stereotypes about disability and love.

“Every story matters,” Shane emphasized. “We need more disabled voices sharing their experiences to show the world that we are vibrant, capable, and deserving of equality.”

🔥 Inspired by Shane’s journey?
Follow Shane and Hannah on Squirmy and Grubs for more insights on accessibility, love, and advocacy.

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