It’s Disability Pride Month! Instead of statistics, I thought I’d share a recent interaction while traveling. Traveling as a disabled person is a feat. Writing about the experience wouldn’t do it justice, you’d have to travel with me to see what it’s really like and to understand all the barriers.
A few weeks ago on a flight back to LA from Detroit, Jason and I were in our seats waiting for the plane to board. Like always, I was in the aisle seat, Jason in the middle when a young gentleman approached us and said I was in his spot. We thought the airlines put me in the aisle but didn’t. So here we are, I’m in this guy’s seat and he wants me to climb to the window. I explain I’m immobile but he doesn’t care. He begins to escalate, so I stop the exchange before it can continue and call the flight attendants over. They try to explain the situation to him but he makes it a big issue and yells, “I understand, but she has to move. I paid for this seat.”
Luckily, the flight wasn’t full so they moved him to the row next to me but the whole exchange, one that’s happened many times before, hit me this time for some reason, and I couldn’t stop crying. Embarrassingly, I quietly cried for 30 minutes under my mask while Jason wiped my tears (because I can’t). Some of the tears were probably from fatigue, some of it the exchange with the whole plane’s eyes awkwardly peering at the disabled one as the main event. The other part is how hard the disabled experience can be. It’s nonstop. I try, I try so hard, but there comes a point when it all becomes too much and I can’t control the tears.
My life is about trying so hard for every little movement, every single act. Nothing is not a challenge with this progressive weakening condition, and falling tears are never usually about that moment yet a culmination of all the struggles. It’s the prying eyes, combatting pity and assumptions. I notice all the stares, and it gets hard being forced to be vulnerable all day long. It’s all the barriers and struggles I have to brush off just to get through the day, and all this noise can make one feel subhuman, a burden…someone better gone than here.
This is one of the many situations I have anxiety over when it comes to traveling. I always have to worry about getting on the plane (without pain or embarrassment), getting an aisle seat in an area (bulkhead) that has more space (for transferring), and that awkward moment when I have to tell the boarding individual in the window seat that I can’t move so they have to climb over me. Now there’s a hundred different caveats of information I could give about flying for disabled and how it can be approved. One of them is seating, there should be an area where they seat disabled (or give priority to certain seats) and airlines should automatically book disabled in the aisle seats. The rows are so narrow it’s even hard for a walking adult to climb to their seat, nevermind Jason (a six foot man) trying to get in there and drag his wife (who is completely immobile) to the middle or window spot.
The flight attendants were really nice. One of them was particularly feisty and defensive of me (and utterly beautiful! I had just pointed her out to Jason, and I was sharing with her how to dye her hair like mine before this whole ordeal, haha). She said we were far too nice and should’ve told him to screw off. When the attendants were trying to resolve the seating issue, there was an open seat in first class and it was suggested to seat him there but she refused to reward him all while ranting about how angry she was. After the flight we learned her best friend is quadriplegic which explained her convictions. (She says she always sees this and has zero tolerance for it. Tip: make flight attendants your ally, not your enemy. I’ll share about this in a seperate post).
In my LGBTQ Pride post last month, I said having pride in oneself can be challenging in a world that says don’t be you. How can you have pride when you’re met with such odds and ignorance?
You can by remembering you’re unique, and it is in your uniqueness, a collision of DNA artistry, mutations and variation mixed with environmental and peer influence—combined with innate character chiseled by life’s wind turbines, that makes you the only copy, and isn’t that enough?
You can be confident and have insecurities at the same time. Pride is not void of insecurities or fear. Pride is knowing that, in your unique breathing form, you are worthy of living.
Though I have pride, joy and know I’m not worthless, the disabled experience can be hard with highs and lows, offering nuance and struggles to the experience. It’s not glossy pop Instagram photos. I’m sorry, no disabled person is happy with being disabled 24/7 (just like no non disabled person is happy all the time) and it’s harmful to advocate or pretend this. You can struggle, you can cry. You can hate it sometimes. This doesn’t make you a bad disabled person. I have these melancholy moments of feeling like I just can’t anymore. I can’t face the future of more progressed lack of mobility or independence. But then I find that tether to keep myself connected and refresh my mind on the marrow of who I am, and the life I’ve lived to achieve this essence. When you have to cry, cry, but don’t let society discourage you from truly seeing you.
We need to transform how we view humanity. Society has the habit of placing worth based on physical productivity but humanity extends beyond the physical; it’s all the intrinsic values that define us — our hearts and minds that exceed the physical form.
Disability isn’t a bad word. It’s an identity, innovation, artistry, resilience, inventiveness and an important perspective that sheds interesting light onto humans. We’re dreamers, accomplished, adapters, lovers, humans and worthy no matter the form we come in.
Disability or illness is something that can affect anyone of us at anytime. It’s something that affects all of us and the most human thing we can commiserate over. Impermanence is the game, so see the pride in your one moment to flicker on this earth, however short or long.
“Disability rights is not an exceptional state nor a fringe civil rights concern but a central and definitive component of the human experience.”
#kamswheelstravel @ Instagram.com/kamredlawsk