Navigating Travel Challenges with Duchenne Muscular Dystrophy: A Personal Journey
Traveling can be a thrilling experience, offering the chance to explore new places and create lasting memories. However, for individuals with disabilities, such as Duchenne muscular dystrophy (DMD), the journey can be fraught with challenges. Recently, I embarked on a trip from Newport Beach, California, to Pensacola, Florida, to visit the headquarters of my employer, Bionews, the publisher of Muscular Dystrophy News Today. While the experience was enriching, it also highlighted the obstacles that many face when traveling with a power wheelchair.
The Importance of Planning Ahead
In a previous article for The Washington Post, I shared my experiences traveling to 13 countries despite my condition. I emphasized the importance of planning and preparation, which can significantly enhance the travel experience for those with disabilities. However, even the best-laid plans can go awry. As my DMD progresses, I find myself needing more assistance, making it crucial to remain calm and adaptable in the face of unexpected challenges.
The Airline Experience: A Test of Patience
Airlines are often the first hurdle for travelers with disabilities. Unfortunately, the industry has a notorious reputation for mishandling power wheelchairs. According to a recent MSNBC opinion piece, airlines reported breaking over 10,500 wheelchairs or scooters in 2019 alone. This statistic is alarming and underscores the need for systemic change within the industry.
My family and I have always been hesitant to travel with my new Permobil F5 power wheelchair, opting instead for a smaller, portable model that lacks essential features. On this trip to Pensacola, we decided to take my older, more beat-up power chair, knowing that baggage handlers often treat wheelchairs with the same care as a duffel bag. At the airport, I watched in dismay as airline workers dropped my chair during loading, a sight that is all too familiar for many in the disabled community.
The Consequences of Mishandling
While my chair emerged from the trip without any major damage, the joystick—an essential component for maneuverability—was left in a compromised state. This forced me to maintain an awkward arm position, leading to discomfort and difficulty in navigating my surroundings. For individuals with disabilities, a wheelchair is not just a mode of transportation; it is an extension of their body. Proper handling is crucial for ensuring comfort and functionality.
Advocating for Change
The treatment of power wheelchairs by airline staff is a pressing issue that requires immediate attention. Training programs for airline employees on how to properly handle mobility devices could make a significant difference. Additionally, accountability measures should be put in place to ensure that individuals with disabilities are not subjected to the careless treatment of their essential equipment.
The Power of Asking for Help
While the travel industry needs to improve, individuals with disabilities can also take proactive steps to enhance their travel experiences. One of the most valuable skills I’ve learned is the importance of asking for help. Embracing discomfort and reaching out to strangers can often lead to positive outcomes. Most people are willing to assist, and hospitality staff are trained to accommodate guests’ needs. However, they cannot help if they are unaware of the challenges faced by travelers.
Preparation is Key
As the Boy Scout motto suggests, being prepared is essential. Before embarking on a trip, it is wise to arrange for accessible transportation, examine hotel layouts via Google Street View for ramps, and identify nearby hospitals in case of emergencies. While spontaneity can add excitement to travel, having a solid foundation of planning can alleviate many potential issues.
A Call for Change in the Travel Industry
Traveling should not be an arduous task for individuals with disabilities. Millions are missing out on the joy of exploring new destinations due to systemic barriers. However, there is hope for improvement. By advocating for better treatment from the travel industry and fostering a mindset of resilience and preparation, we can create a more inclusive environment for all travelers.
In conclusion, while my recent trip to Pensacola was filled with both challenges and learning experiences, it reinforced the importance of advocacy, preparation, and community support. The journey may be difficult, but with the right mindset and resources, traveling with a disability can become a more accessible and enjoyable reality for many.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.