Stories

Traveling with SMA: Ashley's Perspective

By: Ashley Fox
February 20, 2025

Spinal Muscular Atrophy (SMA) is a rare, genetic disease that causes progressive muscle weakness and can impact individuals across a range of ages. We had the chance to sit down with Ashley and learn about her experiences living with SMA and her biggest challenge: navigating accessible travel. Read on to hear Ashley’s perspective.

It goes without saying that life with SMA brings its challenges, but some are more unnecessary than others. One of the biggest challenges has been navigating accessible transportation. Growing up, I lived in a well populated county, although my neighborhood itself was one of the ruralist areas. As a kid I'd have to ask my mom for rides, or miss out on plans altogether with friends, because I couldn’t just hop into someone’s car.

During undergrad at University of California, San Diego, I used the trolley – the city’s public transportation system but I would still have to make plans around the specific stops I could get on and off at. I couldn’t just pick up and take off to do whatever I’d like, I always had to craft a specific plan, sometimes for the simplest things like meeting a friend for lunch.

After undergrad, I moved for my master's degree to a town where the public transportation was less reliable than San Diego. Between internship sites, errands, and medical appointments at my hospital that was two hours away, I reached a point where not having my own car was hindering my health and career. Within the last year, I was extremely fortunate enough to obtain my own wheelchair accessible van.

Outside of my personal day-to-day transportation, air travel with a disability is its own challenge. Most people spend the 24 hours before their trip filled with excitement, while I’m filled with absolute dread. I spend the night before preparing my wheelchair to be stowed in the cargo hold – tightening loose screws and taking pictures of my chair, using zip ties as labels for where to safely grab the chair from, and making so many mental checklists.

Once I'm at the airport, a pit forms in my stomach from wondering if this is the trip my wheelchair will end up shattered on the other end, in a place I’ve never been to, with resources I’m not familiar with. On the plane, I sit in an uncomfortable seat not customized to my body, with countless pillows and belts to keep me propped up. My joints ache, my back hurts, and I’m miserable for the next excruciatingly long hours, all because airlines haven’t made planes accessible for wheelchair users – yet.

In 2024, I had the opportunity to test the Delta Flight Products (DFP) seat prototype that will allow travelers like me to remain in their own wheelchair for the entire flight. Biogen and DFP heard feedback from the community, which they are using to create a more equitable flying experience. This filled me with so much joy because in the future I, and so many others, will be able to travel without the risk of losing our independence or dealing with extreme pain. There’s a lot more work to be done to make transportation accessible, reliable, and inexpensive, but it gives me hope to see the new innovations that are underway.