I always know it’s coming before it is even said. Their eyes are a dead giveaway; that pitiful stare stemming from generations of misinformation about what daily living with a disability is like, followed by some attempt at conversation to fill in the awkward, unfamiliar space.
Sometimes it’s a compliment, “You’re so beautiful for a girl in a wheelchair,” or, “I don’t know how you manage to stay so positive and inspiring, I couldn’t do what you do.”
Sometimes it’s a headline, “Despite her disability, Mykenzie is going for gold”, or a viral video of a person with a disability being asked to the prom. It’s all the same message—normalcy is not an option and it’s always a novelty. We’re told that disability is sad, but we never get an explanation as to why having a disability can be sad, so we assume it must be because of the inherent difference of ability.
We assume that living a life where you can’t do things the way other people do them is a tragedy. But we aren’t taught about the ways that people with disabilities are actually living. You don’t really know the real struggles that come with it until knowing those struggles is your only option.
For a lot of us living with a disability, myself included, if having my disability was my biggest problem I would be in pretty good shape. A lot of the real struggles are the things nobody tells you about—you learn them through experience. Three years ago I went to New York Fashion Week with my best friend. I learned traveling with a power chair on a plane is like trusting a stranger with your newborn baby. Between boarding and touch down, you have no idea or control over what is happening to a vital piece of you. It’s a part of you that is thrown into the belly of the plane like luggage and you just have to hope that it’s treated well.
A little over a year ago, Congress passed the FAA Reauthorization Act, including a rule that requires airlines to report the number of wheelchairs that are mishandled each month. An air travel consumer report issued by the Department of Transportation in February of 2019 stated that in less than one month’s time, more than 701 wheelchairs and scooters were damaged or mishandled by airlines. Between January and April, that number was over 2,000.
When I arrived in New York City for Fashion Week, my wheelchair never made it off our departing flight and got left across the country. So, I had arrived in the city that never sleeps while American Airlines left my legs in Chicago. When my chair finally arrived in NYC five days later, it was broken and continued to become increasingly broken on the flight back home.
This experience isn’t unique. For years, chairs have been mishandled by airlines everywhere, discouraging people with mobility impairments from flying altogether. Just last week, IMG model, Jillian Mercado, had her chair snapped in half by the loading crew at JFK Airport, after specifically telling them not to manually fold her chair because it doesn’t bend like that. These careless acts completely put so many peoples’ entire lives on hold until their equipment can be repaired.
So yes, having a disability can be sad sometimes, but not necessarily because of the disability itself. Sometimes, lack of equal access to things like traveling can be more limiting than a debilitating health condition. And lack of compassion from people who perform these injustices make them all the more frustrating.
My trip to New York was not ruined by the lack of wheelchair that arrived with me. It could have been, but I was lucky to have a force to be reckoned with accompanying me on the trip, and we always just, in the words of Tim Gun, “Make it work.” We navigated the not-always-accessible streets of New York in a variety of pushchairs and hover rounds that didn’t support my frame well, so I was exhausted and sore and ended up hospitalized after this trip.
I still remember this trip as the best week of my life. It was the first time I was in the city I had spent my whole life dreaming about, and I even got to meet Mercado at a fashion show. Even navigating the shows proved to be a challenge. Even when my name was on the list, often the bouncer gave us a puzzled look when we asked where the accessible entrance was. When there wasn’t one, my friend made one, dragging my noodle body wherever we needed to go and making it fashion.
I have been conditioned to expect things to go wrong and to be able to make the best out of whatever twisted joke life has waiting for me. My disability has played a part in this, but ultimately it has been an asset in learning how to overcome obstacles.
Disability isn’t a bad thing, really, it’s just a thing that exists and needs to be acknowledged and treated as such. We have to stop ignoring it and treating it like it’s something to “overcome”. It’s just a part of life, and it’s a part of life that can be made better if people cared about it more than just when they’re affected by it.
People with disabilities make up the only minority that anybody could potentially become a part of at any point in their life. So, today is National Disability Independence day. Although to me and my twisted sense of humor, I thought that was kind of an ironic holiday title, it is one that we should all think about. Think about the spaces around you and if they give equal access to those with mobility impairments. If you really want to make a difference, instead of pitying us, treat us the same way you would treat anyone else. Our lives are not sad and we’re not superhuman objects of admiration. We are just people shaped by experiences, like everyone. The biggest thing you can do is make sure we have equal access to those experiences and fight alongside us until we do.
Images via Madison Lawson