FLYING FREE

JILLIAN MERCADO

I IMAGINE MANY PEOPLE SHARE my fear of flying, but I’d also guess it’s for a very different reason. I think people are mostly scared of planes crashing—clutching the armrest when turbulence hits, or at takeoff and landing. For me, there is the very real fear that in the process of traveling and flying I am going to lose my freedom.

I’ve been traveling since an extremely young age. Every summer, we would visit family in the Dominican Republic. I vividly remember the joy and sheer anticipation I would feel leading up to each trip. Through my young eyes, I saw leaving the United States as traveling to another world. The plane was a rocket ship taking me away to another planet. The only thing getting in the way of my grand adventure was the airport. Airports were a major obstacle. Particularly back then, but even still today, airports were not very advanced when it came to accessibility.

There was always extra attention around me when we would arrive at the airport—and not the good kind. The kind that makes you feel like a burden. The first big inconvenience was that I would have to switch to my manual wheelchair instead of my electric wheelchair, because a place like the Dominican Republic wasn’t a good place to bring an expensive chair. Switching chairs meant giving up the majority of my independence. When I was in that chair, I couldn’t do anything on my own. Something that seems as basic as using the restroom would be a multi-step process requiring significant assistance.

Then there would be the way people at the airport would always talk over me. Even now, when I can speak up for myself, people still tend to talk over me. Back then, they’d mostly talk to my mom instead. I don’t think my family even considered asking my opinion; they thought it was necessary for them to be my voice in order to get my needs met.

On one trip, after we landed in the Dominican Republic, I was immediately grouped with the other people who needed assistive devices, as we are always last off the aircraft. My chair would be the last thing unpacked, after the luggage, a process that could take fifteen to twenty minutes at the fastest, and sometimes up to an hour. This time it seemed to take forever. As I waited with my family, I felt totally worthless. Can you imagine waiting for your assistive device for over an hour after everyone else has left the plane? This time I decided to speak up and ask the flight attendants if there was any way the process could move along more quickly, but as I started to speak, my sister asked me to stop. She was worried the flight attendants wouldn’t know how to deal with me being so outspoken, since the other people with disabilities seemed to be fine with the wait. People with disabilities like me are used to doing what we’re told and not causing a scene or asking questions. I understood why my sister wanted me to be silent, even though I was filled with frustration, and I stopped asking.

I would sometimes try to explain to my family that although I knew they were well-intentioned, I wanted to be able to speak on my own behalf in these situations, because at the end of the day it was my body and my life. The way others talked about me instead of to me made me feel small, like my thoughts, feelings, and preferences were somehow invalid. “If they knew how belittling this felt,” I would think, “they would understand that this is a big deal for me.” But people still tended to address my mom or other family members instead of me, and for the most part I let it go, not wanting to make the situation more complicated than it already was. I would swallow my words and keep it moving, understanding that traveling was already very overwhelming for all of us. My mom had taught me to always speak up on my own behalf, yet when there were so many circumstances and variables to deal with and it wasn’t necessarily easy for me to get my needs met—which was especially the case at airports—she would take the wheel. I think we both figured that getting the job done was more important than who did the asking. What we didn’t consider was how I would have to fight this fight on my own every single time I would travel as an adult.

Now I often travel by myself, so it’s completely up to me to ask for what I need. And what I’ve seen is that airlines will often attempt to take advantage of me because they think I’m not smart enough or won’t dare to speak up for myself. There was an occasion when I flew to California, landing at about 11 p.m. I was the last one on the plane as usual, waiting for my wheelchair. Fifteen minutes went by. No sign of my chair. I wasn’t feeling very well that day and was in no rush at all, so I let them take their time. When another twenty-five minutes passed, I decided to ask a nearby flight attendant for an update, and she told me something I’d heard countless times before: “You need to be patient. These things take a while.” Normally I would keep quiet and try to be patient, like I always did, but this time all the moments I had not spoken up seemed to come rushing back to me at once. “It isn’t my fault that this is taking so long,” I thought. “It’s not fair. I shouldn’t be treated this way due to poor planning on the airline’s part.” Before this day, I had never understood why so many people with disabilities felt angry, but now I could see how constantly being disregarded and disrespected had taken a toll on me, too. An image of me as a child flying to the Dominican Republic came into my mind, and I decided that from now on, I wanted to do everything within my power to make my younger self proud.

“It’s unacceptable that I have been waiting over half an hour for my chair,” I told the flight attendant, “and I want to speak to a manager immediately.” She seemed taken aback, but hurried off to find her boss. I soon found out that my chair had just been hanging out in a nearby hallway without anyone realizing it was there or standing guard to make sure it wasn’t damaged or taken. From that day on, I resolved to always speak up. My freedom—which my chair provides me—is too precious to lose.

I travel with constant fear that my chair might be damaged or even lost by the airline. This is a very real fear. One time an airline snapped my chair into three pieces. When I tried to investigate what happened, it was a constant blame game, never any answers. They weren’t treating my chair as the necessity and freedom that it is.

The truth is, I lose my freedom every time I board a plane. There have been many times where I am sitting in the window seat, watching the cargo staff attempt to load my chair onto the plane on the luggage belt alongside the other luggage without protection on either side. With one false move, my chair could fall sideways and break. Thankfully my chair has never completely fallen off the luggage belt, but that should not have to be something I worry about every single time I fly. Each time it feels like a nightmare that I can’t wake up from. I’m trusting the airline with my most valuable possession, the key to my freedom, yet I’ve seen them treat strollers and musical equipment with more care. I’ve had multiple conversations with managers, and time and time again they deny what I can see with my own eyes, make excuses, and repeat that all their employees receive intensive training. It’s clear to me that the training is not done by people who have a disability.

I recently researched how often airlines mishandle or damage assistive devices, and found that it happens on average twenty-four times a year. It breaks my heart that this affects so many people and can become the reason why they don’t fly. There are so many people who want to travel and experience the world but don’t because they can’t afford to risk having to buy a new chair. As people with disabilities, we have to ask ourselves, “Am I going to enjoy this trip or will I have to spend two months waiting to get my chair back?” When airlines break or damage an assistive device, it usually takes a minimum of two months for it to get fixed by either the manufacturer of the wheelchair or a third-party repair company hired by the airport. We have no control over the wait time because pieces need to be ordered, protocols have to be followed, and insurance needs to approve. We usually can’t just go to a repair shop in our cities, like when a car breaks down.

In order to protect my freedom and use the calm, strong voice my younger self always hoped I could have, I created a system of reminders and tricks that I use when I fly—and it’s a system I try to remember any time I’m in a position of powerlessness and fear.

Know my rights. I have the right to ask for help, and the right to refuse it. There are things I can’t do on my own, and there are things I am capable of doing alone. I also have the right to ask to speak to a manager if I’m not getting the answers I need or the respect I deserve.
Take responsibility. I can’t assume others understand my situation—the capabilities of my device, the way it works, and its importance—so I make sure I have all that information, down to the weight and dimensions of my chair, and communicate it patiently and consistently. I might sometimes feel like a parakeet, repeating and repeating how to handle my chair, but nothing should happen without my consent. When I’m flying, I can ask for a window seat and record the loading of my chair into the plane in order to document any mishandling.
Know what to expect. I find that when I remind myself beforehand that it’s going to take at least twenty minutes for the airline to find my chair, I can endure that twenty minutes much more easily. If I set up a different expectation for myself, the frustration sets in.
Breathe. When I’m frustrated, I have to remember that yelling or being rude does not help the situation. Each time I fly, for example, I have to wait an extra fifteen minutes at security for a TSA agent to pat me down, and I hear the same speech about the pat-down each time. I do a lot of breathing exercises to reduce my anxiety and increase my patience.

My life has always been about survival and calculated risk, whether it’s trusting someone to help me put my shoes on or flying under circumstances where disability isn’t understood in the way it should be. Now it’s also about believing in the power of my own voice. I want to live in a world where people with disabilities are humanized. Where airlines treat an assistive device like a valuable passenger, not like any other piece of luggage. Until that happens, I will continue fighting—by asking for what I need, calling out issues when they arise, and holding others accountable. I know what it’s like to stay quiet and I know what it’s like to use my voice. I choose my worthiness and freedom. I choose to speak up.