Monday, October 1, 2012

Learning to be disabled: feeling like less of a person

I recently took a brief trip to California to visit some beloved friends. As you may or may not know, I've been struggling a great deal with pain 24/7, as my RA seems to have outpaced Humira's magic touch. I use my cane whenever I'm moving around, whether I'm just headed to the kitchen or I'm out and about (which happens less and less often as the pain keeps driving into my joints). It's only in the past few months that I have begun to accept a new label for myself: disabled. I use ramps or elevators instead of stairs. I let myself think about the possibility of applying for disability, and all that the process entails.

And, for the first time, I called the airline and requested wheelchair service. I have been regretting this choice since my first flight out of Denver International Airport.

First let me compliment US Airways' disability team. The woman with whom I spoke in order to secure my wheelchair reservation was kind, understanding and incredibly sweet. I felt great about my choice as soon as I hung up the phone. Unfortunately, the minute I arrived at DIA, I saw an entirely new side to US Air. The woman at the ticket counter regarded me coldly as she called for my wheelchair. She treated me like an annoyance, an interruption to her regularly scheduled day. She hurried me out of there as quickly as possible, scowling as I took my time getting to the handicapped area where I would wait for my wheelchair. She did not inform me of my flight's gate change, though I learned later that my gate had changed quite a bit earlier in the morning. 

Now, I'd like to place some fault squarely in DIA's sometimes-capable hands. As I rolled into security, it seemed that the TSA officers were posed to play "good cop, bad cop" with me. One officer told me, "Of course you can leave your belt on, honey. Don't stand up more than you need." My cane disappeared onto the conveyor, my wheelchair attendant asked if I could walk by myself, and when I said, "No, not really," he encouraged me to stand up and walk myself into the x-ray. There, I stood for what felt like an eternity, my arms up just as the TSA officer directed. I lost my balance, struggled to regain it, and was forced to stand again for the duration of the scan. On the other side of the x-ray, another TSA officer kept me standing as she insisted I take off my belt, despite my insistence that I needed my cane, the previous officer had told me my belt was fine, etc etc. So I stood some more, yanked my belt off, stood for a full body pat-down, and struggled not to fall. Thanks for that, security. Really. We all feel like a piece of meat going through the stupid security lines, but why make a passenger with a mobility disability stand without a cane? Why treat me like I am less than a person, like my pain doesn't matter, and like my disability is nothing more than a formality to be brushed aside the moment I hit the lines for security? 

When that ridiculous ten minutes had finally passed, my attendant quickly got me to my gate. wasn't my gate, as I soon discovered. Perhaps the fault is mine, here, because I did not check the Departures screens before I reached my gate. Regardless, by the time I discovered that I was sitting with a group of people bound for Charleston instead of Phoenix, and hobbled over to the US Air attendant to find my own gate, my flight had almost finished boarding. I found myself with just enough time to drag myself, my cane, my purse and my huge carryon bag to the proper gate. By this point, my joints were screaming. 

The rest of my trip to Oakland went relatively smoothly. I had a wheelchair in Phoenix, and another in Oakland. I met my ride. The trip was fantastic, all aches and pains aside. But as we approached Oakland International Airport the day of my departure, my stomach twisted itself into a knot of anxiety.

Security at Oakland was wonderful. Officers provided me with a wooden cane and whisked me through the simple metal detector instead of making me stand in that godawful x-ray cage. Everyone was kind, courteous and incredibly respectful of my limited mobility. My attendant was so sweet and gentle. The experience was a dream when compared with DIA's security nightmare. 

I did not have a wheelchair attendant in Phoenix, at my connecting flight, despite my taking the time in Oakland to speak with a US Air representative and ensure that I had wheelchairs lined up at Phoenix and Denver. I did not have a wheelchair, despite my conversation about needing a wheelchair with the stewardess on my plane to Phoenix. What the heck. I got myself to my gate, and I got myself on the plane. Once in Denver, I knew I'd be fine. 

I did have an attendant meet me at the gate in Denver. She did offer me a wheelchair, and wheel me off the plane. And then, she had me exit the wheelchair and find myself a seat at the abandoned US Air gate. She had "another plane to meet, sorry." She would have someone else come get me "soon." So I sat. The US Air representative closed up the gate and left the evening. The man driving the big "disabled people" cart scooted right on past me. Another flight got in somewhere to my right. Nobody appeared. More gates closed up for the night. Most of the gates in my area closed up for the night. Nobody appeared. 

So I walked. I marched myself from the B gates to the elevators, from the elevators to the train, from the  train to baggage claim. I got my suitcase and found my ride home. I got home. 

I've been pissed off ever since. Sure, those pesky disabled really hold up the security line. Yes, it's a pain in the ass to wheel some disabled person around the stupid airport. Yeah, I get that it's a pretty crappy job. But you know what? Being disabled is pretty crappy too. This is not something I, or anybody else, chose. I would rather be able to walk, smoothly and without searing pain at every step, through the entire airport. I would rather be able to proceed through security without the hassle of a cane and a wheelchair. I would rather be able to live my whole freakin' life without ever carrying a cane again. That cane is my beacon and my label. It screams, "look at this young woman with this big ugly cane. Look at her walk weird. She needs this for mobility." And I hate it, just like I hated being in a wheelchair at crotch level with EVERYONE. Nobody wanted to look at me, but everyone did. What an uncomfortable issue to address. Passengers deplaning next to me couldn't decide if they should pass my wheelchair or just walk slowly and keep their eyes down. Being without the wheelchair, though, was so much worse. I struggled through crowds of people who watched me with concern and turned back to each other as soon as I had passed. I told boarding passengers to, "go around me. Sorry, I'm a little slow!" I hauled all my crap and my cane and my big, sore, swollen self around and felt the eyes on me. 

I returned from my trip ashamed of my disability. This is the worst feeling. I can't walk well on my own and I'm 23 years old. I'm disabled. I need a wheelchair when I'm traveling by myself. I should not be made to feel sorry for that fact. I should not be made to feel that I am a hassle for airline representatives and TSA officers. I should not have to walk myself through the airport when doing so causes great harm to my physical person. So why did these things happen? 

And why did Oakland get it right, while DIA - a much larger and better staffed airport - failed so, so horribly?

I'd like to write an angry but eloquent e-mail to DIA, and send it to the disability coordinator and to the TSA office
But perhaps I'll share this blog with them instead. 


  1. The whole time reading your blog, I was chanting "poison pen letter! poison pen letter!" You do need to share these valid concerns and complaints about their piss poor process for the disabled. Um duh, we travel too. Even though I am pretty much an invalid, I do like to see my family from time to time. Now, I just feel like boycotting US Air for their lack in judgment and rude behavior that obviously lacked tact and decorum. I'm sorry you are feeling so ill. Is it possible to see another Rheumy, one that will change meds around in order to help you? I know I am in your boat but I just want people to somehow feel better with this awful disease, yet we are all struggling. Feel better and get much needed rest.


    1. I always look forward to your comments!! I have begun the process of letter-writing to the TSA, DIA and US Air. Additionally, I'm composing several short pieces for local news outlets.

      As soon as I wrote this piece, I had a friend message me saying that US Air completely screwed up on her requests as a traveler with Celiac disease. It seems they're just awful to their special needs passengers, and I think that's absolutely unacceptable. I plan to express that very clearly to them, and hope that others with disabilities will do the same.

      I saw my rheumy yesterday, and he pulled me off the Humira. I start Orencia today, and am totally excited. In the meantime, I'm on a prednisone cousin that metabolizes differently. It's working! I've never been so happy to march around the house in circles.

      Much love to you, always!

  2. Katy,
    Perhaps you might try sending a link to this blog entry to whomever is the ADA official with the Department of Transportation as well as to a couple of editors at the Denver Post. I'm sure there are others that would be interested in this "story"...I'd love to see your great writing about an awful situation bring about some real change in how DIA operates. As your dad would say, "Don't get mad, get even!"

    1. Kate,
      You and Dad are an awesome team, and you are absolutely right! His words are a perfect reminder in a situation like this. My mom and I are currently looking around at appropriate news outlets for this story. I would be so thrilled to see my experience turn this into a real moment of clarity and change for the organizations involved. Thank you for reading and for your encouragement!

  3. I hope you DO send a hard copy of this blog post to DIA, the Disability Coordinator and the TSA. You were treated abominably. I have RA myself, and when I was 31 until I was about 41, I frequently needed a cane, and sometimes crutches, to walk. The pain was stunning. It takes a lot of courage and determination to walk from gate to gate and from gate to baggage claim and then out when you're in that kind of pain. My heart goes out to you.

    Please, please DO send the blog post to the appropriate agencies. They need to know how poorly you were treated.

    And as for being ashamed of your disability... oh, my dear. I know how hard it is, but you have nothing to be ashamed of. You're courageous and cheerful in the face of incredible hardship. Be proud of how well you handle what anyone would perceive as a horrible disease.

    1. This is a wonderfully heartfelt comment that I appreciate with everything I have. Thank you. I will not let this issue rest here, because more than any kind of revenge for my own struggles with these organizations, I want them to make changes before more passengers like myself end up in the same situations.

      Thank you so much for your kind words.