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disability law

Achilles

When Achilles was an infant, his mother was told that he would die young.  She carried him to the River Styx, the dark water that separated Earth from the Underworld, and dipped him in its waters to make him impervious to harm.  Achilles grew up without fear of injury until a poison arrow landed in his heel, where his mother had held onto him many years before.  He died and became a warning – there is always a weakness, no matter how strong something seems.

I have an Achilles’ heel, and it is airports.

Since July 2014, I have travelled by plane to the following places: Seattle, Colorado, Orlando, Los Angeles, Hong Kong, Beijing, and Colorado again.  I talked to lots of people who are more intrepid travelers than I am and got their advice.  I talked to my doctors.  I got all the paperwork and all the notes. I organized everything and made sure I had enough meds, port supplies, ostomy supplies and safe foods in case we got diverted or delayed or cancelled.   I called the airline the day after booking tickets several weeks before travel.  They were always very courteous and attentive and assured me I would not have any trouble.

The problem happens at the airport.  Specifically, it happens at the check-in counter.  I always ask for a wheelchair to meet me at the counter because while I am certainly much more stable than I was a year ago, standing up, especially in one place, pulling heavy things, is not my strong suit.  So I get to the counter and identify myself and ask for the wheelchair.  Then, while we are waiting for the wheelchair to come, it happens.

They tell me I can’t bring on my two luggage containers of medical supplies and insist that they will make me gate check one, and also that my bag holding my infusion pump and medication WHICH IS ON AND ATTACHED TO MY BODY counts as my personal item and has to be stowed overhead.  So I can only take half of my medical supplies and the bag with a line pumping medication to my body has to go in an overhead bin that will close on the line.  And so it begins.

The last eight flights I have taken were with Popular American Airline That I’m Sure You Can Guess.  I like Popular American Airline for a few reasons: their seats are bigger, they understand that I have a legitimate need to have more space (to juggle IV meds), they eventually agree that it is impossible for me to stow my pump because it is attached to my body, and they have movies and Wifi.  I pay more to travel with Popular American Airline because once I am on the plane, I generally don’t have huge problems.  I expect to get questions, I expect for people to not know things, that’s fine.  But once we have a brief exchange, they agree that what I was told by their disability services people is accurate and I have a pleasant flight.

That is not the case with the people at the check-in counter.

I have been told many tales by the people at the check-in counter: that I cannot bring all of my necessary medical supplies onboard (which is not true); that I can only bring one medium sized piece of luggage with supplies; that I have to bring multiple small pieces of luggage with supplies; that I can bring one small piece of luggage and then the rest have to be in “compressible” bags; that I can bring one small piece of luggage and it has to meet the weight limit; that I can bring one small piece of luggage and it doesn’t have to meet the weight limit; and so on.  So I never really know what I’m going to get, and calling ahead of time never helps.  I get a different answer depending on who is behind the counter.  They eventually call a supervisor, and then the supervisor tells me whatever they happen to think, which is also inconsistent.  It’s always a nightmare, and for the last several flights, I have literally started crying within fifteen minutes of being at the airport.

No amount of preparation or education helps.  Popular American Airline will not give me a letter explaining what I can bring that I can show at the counter.  They cannot “keep notes about me” so that they have a copy of my fit to fly letter on file.  They will not put in writing that I can use the pump.  Best of all, everytime this happens, they send me an email that says that they are sorry that I did not have a good experience but that they “respectfully deny” that they violated any regulations.  I don’t call them everytime this happens because I know they don’t care.  They just automatically send me an email that is basically an enormous fuck you.

What I find really funny about this situation is that sometimes, the people at the check-in counter will tell me that the reason I can’t talk those supplies with me is because TSA won’t let me.  TSA is much maligned and I have to tell you that I have not had a bad experience with TSA since I started travelling again in July 2014.  They know what PICC lines, ostomies and ports are. They are courteous and efficient. I plan to get patted down and have my bags opened and my things and my person swabbed for explosives because these people are trying to make sure no one blows up airplanes and I am carrying large amounts of liquids, glass vials, syringes, needles, adhesives, medication bottles, an endless amount of pills, a clicking infusion pump, packets of cromolyn and a partridge in a pear tree (sung).  They are always very careful to be sure they don’t contaminate any of my line supplies or medications.  TSA is not the problem here.

So I get all excited to go on these trips and see people and do things and I premedicate and call and call and jump through all the hoops and then I get to the airport and within minutes, I am so frustrated that I am crying.  And then that’s it, I’m the girl who cries at the airport and you can never un-be that girl.  And it has gotten so bad that it makes me not want to travel.

In my heart, I have always been a traveler.  I have always wanted to get on airplanes and go places and see new things, even mundane things, even by myself.  Before I got sick, I would board planes with my iPod or Discman (I know, I’m dating myself here) and a small journal to write in.  I would write and listen to music while looking out the window.  I didn’t just like being in different places.  I actually loved the change of the environment, the little lights below at night, the reddening of the sky as the plane chased daylight.  I was a good traveler.

Being at the airport now is a reminder that my experience in the before matters very little.  It doesn’t matter that I used to be a good traveler, because now I’m just a crying woman who needs a wheelchair and wants to bring too much luggage onboard.  I have had some incredible, life changing victories in the last two years, but it has been hard won.  It takes such a toll on me, both physically and emotionally.

Last week, I went to visit one of my best friends in Colorado (hi, Priscilla!!!!).  I stayed for four days, which is pretty short for me, but I couldn’t take more time away from work right now.  We stayed over in Denver, hung out at her place in Summit County, went to Garden of the Gods and drove back to her place through mountain backroads.  I have been to Colorado ten times in the last nine years, and that drive home was the most stunningly beautiful landscape I have ever seen.  Purple mountains, blue skies, unblemished snow fields, no clouds.  So beautiful it feels like I am different for having seen it.

The day I flew home was one of the longest days of my adult life.  They right away started with you can’t take all this stuff on the plane, then there was a mechanical issue with the plane after we had boarded and we all had to get off and then they cancelled the flight.  One of the gate agents really put her ass into making sure I could get home that day and I got a seat on a direct flight with another airline that night.  By the time I got home, I was really in bad shape.  I literally couldn’t stand for more than a minute or so at a time.  Bad.

I want to be a traveler again like I used to be and my Achilles’ heel is airports and I’m so fucking sick of this shit.