Traveling with SMA: flying shouldn’t be this difficult

Traveling with SMA: flying shouldn’t be this difficult

‘Traveling with SMA’ is a true story of how a flight attendant mistreated a young adult with Spinal Muscular Atrophy on a domestic U.S. flight.

I’m going to finish this article if it’s the last thing I do. This is the second time I’ve written it, last time it deleted itself because my tablet is very sensitive and well, hopefully, you can connect the dots. Don’t make me relive the trauma.

Last time, I started this article by asking if you’re one of these physically disabled travel guide influencers that keep popping up on my Instagram feed. If you are, and you’re reading this, please contact me. I beg of you.

I have questions. How did you take your Permobil from the Eiffel Tower to the Egyptian Pyramids in one piece? Because I can’t seem to go from Savannah to Puerto Rico, not to mention back in one piece.

For those of you who don’t understand, traveling with a physical disability is really HARD. Traveling with SMA is fucking HARD. At least when you have Spinal Muscular Atrophy (SMA).

Let me put it in able-bodied terms:

You get on the plane with four limbs, then two hours later, you get off the plane with 3 limbs and a broken toe. That kinda puts a damper on your trip.

Over the years, my parents and I have tried everything. We’ve wrapped the chair in bubble wrap, after disassembling 85% of it, then put it in a crate and sent it like luggage. However, there’s always a couple of SOB’s who just don’t give a shit and just let the chair drop from the conveyor belt like it wasn’t a person’s lifeline. This is why I’ve resorted to only traveling in my stroller of death. (For those who don’t know what I’m talking about, please read my Disney post). After years and years, my parents…and I have decided that this has been the most efficient way to travel. Because of this, we arrive three hours before the flight so we can stalk the TSA guy to let us board the plane before everyone else does. We do this because getting board safely takes time.

This is precisely what we did on December 19, 2019. We disassembled the stroller of death and put it in a duffle bag. We got to the TSA guy, luckily he spoke Spanish, so communication flowed both ways. He let us, board, before everyone else as per usual, no problema.

Everything went as planned. Dad carried me in, I said hello to the flight attendant. She looked cute, I looked cute. Dad placed me in the middle seat as the TSA guy handed my mother the cushions my dad had hand-crafted for my legs so they wouldn’t fall asleep and the one for my arms to not want to fall off before the flight was over. After my dad finished packing the chair away, they both sat down, one parent per side, me in the middle. Everything was flowing really well…maybe too well…

Old people started boarding the plane, which meant it was showtime. Everyone else boarded after. The next thing you know, the flight attendant was shutting the door and making her run down the aisle. This is when shit hit the ceiling.

The flight attendant checked the overhead compartments. This was when she told my mom she had to tuck the pillow under my feet further under the seat in front of us for takeoff. My mother replied, “It’s for her legs not to fall asleep.” (My mother can be very snarky, but she said this quite peacefully.)

For some unknown reason, this flight attendant decided to open the door and get the TSA guy to come back onto the plane. He then proceeded to speak to my dad as if they were college buddies, and asked him to please move me from the middle seat to window seat. My dad obviously refused. He started changing colors from confused pink to angry red to furious blue.

This was when the flight attendant joined us to state that the Law F17, titled “Disabled People Can Suck It” prohibits children from being in the middle seat. Yes, “CHILDREN.” Apparently, if there’s an emergency, there has to be enough space for the person on the window (my mom) to exit.

This was when we all lost it. My dad proceeded to highlight the fact that I am not a child. It takes about 30 minutes to change me from one seat to the other. And, she should be talking to me, and not about me to my parents. When she decided all by herself, I was illiterate she attempted to defend her actions by saying, “I just don’t speak Spanish.” To which I responded to her surprise, “It’s fine. I speak English perfectly well.”

1. I am not a child.
2. I AM NOT A CHILD.
3. I don’t understand what my rights are as a disabled person. If I am a disabled person sitting by the window, how the HELL are you planning to get me out in an emergency? … Hypothetically speaking, it would be hard to do that if I were a child.
4. Can’t this bitch read the room? My mother is on the window side. I repeat, my MOTHER is on the window side. She wouldn’t leave me ever. EVER.

So really, all this bitch did was delay the flight for an hour. Because we were not moving. We refused. So this back and forth continued until the pilot got sick of it and called her into the pilot’s chamber, and that’s when she caved.

The TSA guy congratulated us on winning our hard-fought battle. I gave the flight attendant the death stare for the next 2.5 hours.

I think this is where I give my viewer some advice and/or tell you how I cope with situations like this. However, I’m not there yet. I do not know. I’m still figuring out how to cope with the situation.

So a plea to the disabled traveling guru who keeps popping up on my Instagram feed. If you indeed are a huge fan of my work or are at least tickled by misery (let’s be honest, I’m sure that’s 85% of you people), don’t keep these secrets to yourself.

I want to know. I need to know. How DO you travel so frequently while keeping your shit together?

Meanwhile, I’ve decided that my next step in avoiding this dilemma will be to wear a baseball cap that strictly says, “NOT A CHILD” whenever I attempt to travel.