Voicing frustrations is an important part of disability advocacy

I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and I still walk. Although I started using a rollator a few years ago, many people with FA have to utilize a wheelchair long before their 40s.

For the first two years, I only used my rollator in certain situations, most notably when going to a shopping mall or traveling. I felt comfortable walking independently when visiting a friend’s house or picking up items from the dry cleaner. These activities require much less walking than a trip to the mall or a big-box store, and I always have just enough energy for a stop at Starbucks.

Recommended Reading

July 20, 2023 Columns by Kendall Harvey

Shades of gray: What it’s like to have an ambulatory disability

Traveling with a mobility aid

Since I started using a mobility device, it’s been a must-have when I travel, whether I’m going on a road trip, taking a train, or flying. Even small airports require a lot of walking. So, for the past three years, my rollator has gone wherever I go.

This means I depend on many other people to handle my mobility device. As most, if not all, disabled airplane passengers can attest, mobility devices aren’t always handled with care. Spend a few moments searching Google or YouTube and you’ll find story after story of terrible experiences that left disabled travelers stranded for hours and emotionally drained.

A broken wheelchair renders people physically helpless and robbed of their independence. I can only imagine the frustration, anger, sadness, and FOMO (fear of missing out) a disabled person experiences when they can’t make their connecting flight or miss an important event because their mobility device was damaged beyond repair.

Although progress is being made, disabled passengers will likely continue to face these challenges for a while.

My first wheelchair was a loaner from a rehabilitation hospital after I broke my hip during a trip. That wheelchair was broken beyond repair during a flight. My rollator has also been damaged during air travel, but I’ve always been able to continue using it while working with the airline to have it repaired or replaced.

However, a recent flight presented me with a different scenario.

Why disability advocacy matters

Because I need my rollator to move about the airport, I check it at the gate. I use it until I reach the aircraft door, leave it there, and use seats or storage bins to steady myself as I walk to my seat. When items are gate-checked, they are designated for retrieval at the gate upon deplaning. It’s a routine I’m accustomed to.

On a recent direct flight, I found myself at my arrival gate with no rollator. Somehow, it was either lost in the cargo area at one of the airports, or it was never loaded onto my flight. Although I have my suspicions, it was difficult to confirm exactly what had happened.

Regardless, I found myself standing at the end of a jetway without the mobility device I’d entrusted to the airline. Sure, the airline worked to resolve the issue, but it was a mishap that never should’ve occurred.

Whether the root of the issue is a lack of training, poor systems for securing such cargo, or purely a lack of accountability, I can identify a handful of reasons why mobility devices might get damaged. But it blows my mind that a gate-checked item could be misplaced or forgotten.

However, these situations remind me of the importance of voicing my frustrations.

One or 10 complaints by me won’t cause a multibillion-dollar industry to overhaul its practices or modify employee training. But what if every passenger spoke up when something goes wrong or a mobility aid gets damaged? The collective voice of many may accelerate the progress we want to see.

I’m not encouraging anyone to yell or sacrifice their dignity, but rather to advocate. There’s no good excuse for not doing so.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional 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. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.