I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat in them all day, every day.
I guess you could say that I didn’t know what “disabled” meant. To me, it was black and white: You either needed a wheelchair or you didn’t; you were healthy or unwell, injured or fine. I had no idea that there were nuances, shades of gray, and evolving realities.
Exploring the nuances of disability
When I was diagnosed with FA, the words “progressive” and “degenerative” meant nothing to me. I thought I’d wake up one day and need a wheelchair for all my waking hours, never again walking, standing, or using my legs for anything.
I didn’t realize that the transition into life with a disability would be gradual for me. During this process, I learned a new vocabulary word: ambulatory. I am an ambulatory mobility aid user. What does that look like for me, at this stage of my progression?
I’m completely dependent on assistance to move my lower body. I can walk if I’m using a walker or holding on to someone, and stand if I’m bracing myself against something. I may also use a manual wheelchair, transport wheelchair, or electric mobility scooter, depending on what I need to get around safely. This is determined by several factors, including the terrain, how tired I am, how much distance I need to cover, and whether I’ll have a capable adult there to assist me.
Because my arsenal of mobility aids is so vast and my abilities are ever-changing, I get a lot of looks and questions from strangers and acquaintances who, like the younger me, don’t realize that disability is a wide spectrum.
There’s no better example of this phenomenon than when I’m traveling. At the airport, Transportation Security Administration agents are always perplexed about how to screen me. They see me sitting in a wheelchair and ask if I can walk. I always answer, “Yes, but not without assistance, and no, I can’t use that wooden cane to go through the metal detector.” So I have to wait for a female agent to wheel me through, have my hands and chair tested for residue, and then endure a frisk.
At Disney World, employees ask if I can take three steps to transfer from my wheelchair to the ride seats. I say, “Yes, so long as I have assistance,” and either they or a family member will assist me. This inevitably results in curious or nasty stares and eye rolls from people who assume I’m using the wheelchair to cut in line or because I’m lazy.
People always seem confused by ambulatory wheelchair users, so I’m trying to educate the public that disabilities have shades of gray. My abilities may look different tomorrow than they do today. My level of ambulation changes as my FA symptoms progress. I wish I could breeze through metal detectors at airport security and log miles of walking at theme parks, but that isn’t my reality.
My reality is that my disability is unpredictable outside of needing full-time assistance. Depending on the day, you might see me using my walker, driving a scooter, or being pushed in a wheelchair. Just know that I chose whatever aid I’m using because it’s the best way for me to participate safely in that particular outing or event. Although I’m self-conscious about my disability, I’m grateful that my village supports me on my many adventures, big and small. Apart from my physical limitations and complicated logistics, I’m just like anyone else.
“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.” — Galatians 6:4