Key Takeaways
- Accessible air travel is crucial for individuals with Duchenne Muscular Dystrophy, as clinical trials provide hope and potential treatments.
- Traveling by air can be physically painful and emotionally draining for wheelchair users due to inadequate systems and training.
- Passengers often witness the struggles and loss of dignity faced during transfers, adding to the emotional toll of air travel.
- Allowing wheelchair users to remain in their chairs during flights could eliminate risks and enhance participation in clinical trials.
- Improving accessibility in air travel is a matter of equity and safety, ensuring individuals have access to life-saving research.
Living with Duchenne and the Importance of Clinical Trials
I am 24 years old, living with Duchenne Muscular Dystrophy, and advocating for accessible air travel. Duchenne is a muscle-wasting disease that causes the body’s muscles to be gradually destroyed rather than repaired. Over time, it takes away strength, independence, and mobility. There are very few medications that help treat Duchenne, and there is currently no cure. That is why clinical trials are so important: they aren’t just research, they are a lifeline.
That’s why I participate in clinical trials.
For me, these trials are not optional; they are hope. They are the pathway to treatments that could slow this disease, extend my life, and improve the quality of life for so many others like me.
When Travel Becomes a Barrier to Care
But participating often requires air travel, and that is where the system fails people like me, as accessible air travel is nearly non-existent.
Flying is not just inconvenient–it is physically painful, emotionally draining, and, at times, unsafe.
To even get on a plane, my family had to purchase a second, less supportive wheelchair just to avoid the risk of my primary chair being destroyed in cargo. My wheelchair is not just equipment—it is my independence. If it breaks, I lose my mobility, my freedom, and my ability to function.
A System That Compromises Safety and Dignity
When I arrive at the plane, I am left waiting at the end of the jet bridge to be transferred into a narrow aisle chair. This chair is not designed for comfort or dignity. I rely entirely on airline staff to lift and transfer me, yet too often, they are not properly trained to do so safely.
I have experienced painful transfers. I have felt the fear of being dropped. I have had to trust strangers with my body, knowing that one wrong move could cause serious injury.
The Emotional Cost of Accessibility Gaps
And all of this happens in front of a crowd.
Other passengers watch as I am lifted, shifted, and maneuvered into a chair that doesn’t fit my body. They see the struggle; they see the pain. It is more than embarrassing—it strips away my dignity at my most vulnerable moment. It leaves me feeling exposed and overlooked.
Then comes the transfer into the airplane seat: tight, awkward, and physically demanding.
Every step depends on others, and every step carries risk.
There Is a Better Way Forward
This is not a rare experience. This is the reality of air travel for wheelchair users.
It doesn’t have to be this way.
If I were allowed to remain in my own wheelchair during a flight, the risks would vanish. No painful transfers. No fear of injury. No public loss of dignity. No risk of losing the equipment that facilitates my independence.
Most importantly, it would allow so many to participate fully in clinical trials.
Accessibility Should Never Be Optional
Right now, the alternative to flying is often a grueling car ride that takes days. For someone with Duchenne, that is more than uncomfortable—it is physically overwhelming and, at times, impossible.
A flight takes hours; a drive takes days. That difference determines whether or not someone can access life-saving research.
This is bigger than travel. This is about equity in healthcare. This is about dignity, safety, and basic human rights. If wheelchair users could stay in their chairs, doors that are currently slammed shut would finally open. More people could participate in trials. More lives could be improved. More time could be gained.
Accessible air travel is not a luxury—it is a necessity. And for people like me, it is the difference between accessing hope or being left behind.
Removing Barriers Creates Opportunities
Whether supporting clinical trial participation, healthcare access, or everyday independence, accessibility matters. Learn how patient voices can help identify barriers, inform solutions, and create more inclusive experiences for the communities you serve.
