Guest post by Sarah Mueller
And now, from the depths of the uncertainty that has been the Holdin’ Out for a Hero blogging schedule comes, indeed, an unprecedented announcement. While I’ve often toyed with the idea of featuring guest bloggers on this site, no one has stood out to me as a writer the way this first contributor has. I have known Sarah Mueller online for only a few short months, but already I can think of no better person to usher in this new era of Holdin’ Out.
From now on, I’d like to periodically feature writers whose voices echo different aspects of life with spina bifida. I will not be limiting this to only people with spina bifida, as I firmly believe we are a “community” and not just a group of individuals.
If anyone is interested in contributing to Holdin’ Out for a Hero, please E-mail me at email@example.com so that we can discuss some ground rules for posting.
Sarah Mueller, 24, lives in Wauwatosa, Wisconsin and has spina bifida. She holds a B.A. in Justice, focusing on advocacy, grassroots programs, criminal justice and pre-law, and a Certificate in Peacebuilding. She is now pursuing her M.S. in Thanatology. Sarah plans to focus her thesis on the “inherent ability of people with disabilities to persevere, adapt and grieve effectively.” In late 2012, she hopes to launch a disability-related company.
My name is Sarah Mueller, age 24, hailing from Wauwatosa, Wisconsin. I most recently chose to fly with you on round-trip, non-stop flights #215 and #212, March 10th & 16th, 2011 from Milwaukee, Wisconsin to Naples, Florida. On this particular excursion I traveled alongside my mom; our combined tickets totaling approximately $756.00. Though my flight from Milwaukee to Naples was uneventful, the return flight was quite the opposite, and I would like for you to know all about it.
Firstly, I would like to share that I have traveled via the air around fifty or so times in my short life, and have never once experienced an issue in purchasing exit-row seating on any airplane, with any airline—that is, until this most recent trip. Not only was there an issue with being seated in the spots which had been purchased ahead of time, but the inner structure of this particular AirTran airbus was compromised. To top it all off, several airline personnel were insensitive, prejudiced and downright ignorant… all issues/encounters which I find to be unacceptable, and marring to the reputation of AirTran Airlines.
It is important now to point out that I was born with a physical disability called Spina Bifida Myelomeningocele. Its presence is obvious, but very seldom does it hinder living out my life as say a person without a disability might. It is unique to every person, but in my case is minimally cumbersome in travel, save wheelchair airport assistance which is provided to and through larger airports and TSA check points. I do not regularly use a cane or wheelchair, and walk completely unassisted in most activities (this is not to say these should be defining qualities or matter exclusively, but it is my specific reality which I am explaining). I live alone, drive without hand controls, attend graduate school, and engage in many common twenty-something activities. Having Spina Bifida Myelomeningocele has never stopped me from living, let alone flying, nor has it ever previously precluded me from having a normal flying experience.
That being said, an hour before I was to even board my home-bound flight from Naples to Milwaukee, I could tell something was different this time around. AirTran personnel were incessantly eyeing me up at the gate—until I was finally approached by one that asked me where my final destination was. Upon my reply, she looked confused, jotted down some notes, and simply walked away.
Just as I am about to board the flight, my name is called by a Customer Service Agent for AirTran by the name of William Vincent, who seems bewildered by my seating arrangement on the airplane. After verifying that I had indeed requested wheelchair service at Mitchell Airport in Milwaukee and paid for an exit seat, Mr. Vincent stated he would have to move me to another spot. “Why?” I asked. Said through condemning laughter, Mr. Vincent retorted: “Because, to sit in those seats you have to actually be healthy”. At first I was caught off guard—confused, even. However, the understanding and humiliation quickly set in. Keenly aware I was immensely disenchanted and bemused by his reply, gazing downward, he stated he would ‘do what he could’ to keep me in my pre-purchased seat, but that stewardesses would likely ‘make me move’.
And make me move they did. Though standard protocol was followed and I had been asked before lift-off if I were willing and able to assist in the event of an emergency (to which I had proudly replied “yes”), I quickly came to learn that believing in yourself and knowing your own abilities was simply not good enough for AirTran. It all of a sudden became my job to convince personnel, the FAA and your airline that I would most certainly be both capable of assisting and of value in the event of a crisis.
Being so unexpectedly and repeatedly dehumanized, I failed in a second attempt to stand up for myself. In what I considered a crushing blow to my ego, my mom and I were moved up one row to cramped seating which did little other than exacerbate chronic soreness in my joints—which is why we have always preferred spacious, exit seating to begin with. The couple which had previously sat in our new seats had now been moved to our more expensive and comfortable spot, which they of course did not have to pay extra for as we had.
Desperately trying to ignore the psychological injury I felt over the move request and actively attempting to hide my flushed cheeks, I began to get ‘comfortable’ in my new seat. Right away I noticed I was now next to a dilapidated window which was partially dangling off the inner wall of the plane. Charming. Disgust rapidly returned full-steam, at which point I decided to snap a cell phone picture of the window, and began to look around for other anomalies near my new seat. Without much effort, I found another: across from where we would have otherwise been sitting in the opposite exit row, sat a heavier family of three. The father in particular caused quite a scene. For the duration of the flight he coughed, hacked, spit, drooled, and even dripped snot all over himself.
This was the accepted picture of health which had surpassed me in seating accommodation rights? My frustration and humiliation grew. Though it is not my desire or intent to judge others as I have so unfairly been, I was undoubtedly bemused as to how this family’s health and collective ability had somehow appeared better, or more promising than my own.
Many individuals with disabilities already have a deeply-embedded, shattered self-view—understandably so, given all the longstanding prejudice and misconception in Western culture. But I knew I had been wronged. I had been unfairly judged, perceived and consequently ‘dealt with’ by you, AirTran Airlines, and I was not about to let it go. There have been far too many instances of disrespect brought about by airlines in recent years in relation to disability-related ignorance, and I was not about to be unfortunate incident # ___ . A free ticket is not what I am after, nor will it appease me, quell or even assuage my dissatisfaction with your airline. An apology would be appreciated—but change is what is truly expected. Must we continually enforce sensitivity training, or can we simply begin to learn and understand that even in disability, there is great ability?
It is not my suggestion that every individual be evaluated with a fine tooth comb and given a physical examination upon purchasing a ticket for travel, but only that when a person states they can and will do something—believe them. If you will not judge the inherent ability of three heavier-set individuals, why must you question mine? Am I somehow less human than your other customers? Does the FAA negatively delineate individuals with disabilities in their guidelines and rules? If so, I’d like to be an agent of change.
AirTran Airlines, I have Spina Bifida…and I am healthy. Let me help you.