Wednesday, June 20, 2012

A Crohn's Patient's Open Letter to US Airways

 *** UPDATE***

US Airways called -- Christy.  She said she was calling in response to my open letter to US Airways.  She said they never received my letter to the CEO (I have fax confirmations and I confirmed the fax number by phone before I sent it).  She again tried to distinguish between assistive devices, which we would be allowed to carry on board, and things like clothing and personal hygiene items, which she thinks they don't have to let us take on board despite fecal incontinence.  She claimed that the gate agents asked the flight crew if there was room for my bag; in fact, a gate agent specifically asked another gate agent whether she should check to see if there was room and he said no.  She can't tell me whether the nasty flight attendant was spoken to because that would violate the flight attendant's privacy rights (even though I don't know the flight attendant's name).  She said I should have pre-boarded -- so again, it was all my fault.  She said she would follow up with a letter.  I told her that unless she was prepared to apologize and tell me what steps they have taken to make sure this never happens again, she didn't need to send me a letter since her phone call was making things worse rather than better.  Now, I just need time to file a TSA complaint.  J


 I am posting this because I still have not received any response whatsoever.  Jennifer


W. Douglas Parker
Chief Executive Officer
J. Scott Kirby
US Airways Group, Inc.
111 W. Rio Salado Pkwy
Tempe, AZ  85281

Dear Mssrs. Parker and Kirby:

          I am writing regarding the offensive, harmful and illegal conduct to which I was subjected on a recent US Airways flight.  I previously wrote to your Customer Relations Department and received a telephone call from a woman named Cynthia, who insulted and offended me even more, providing not even a hint of sympathy for all I have been put through, stating facts that are patently false, and lecturing me on what I should have done differently, even if that required me to expose even more of the details of my private medical information in a public setting.  Thus, I am left with no alternative but to contact you directly.

On May 20, 2012, I had the great misfortune of traveling from LAX to Philadelphia on US Airways Flight 796, with my ultimate destination in Hartford, Connecticut.  I was in boarding group 5.[1]  Because the flight was full, we were told long after most passengers had boarded that everyone in group 5 had to check their bags.  I very clearly stated that I am very ill, that I have a disability under the Americans with Disabilities Act[2], and that I could not check my bag.  I had only one small roller board[3], but I was told I could not take my bag on the plane with me.   I tried to explain that I had too much medicine (fifteen prescription medications) with me and I really needed my bag. I implored the staff to please try to find some solution that would allow me to keep my bag with me.  Instead, US Airways staff gave me a flimsy plastic bag and instructed me to unpack my medicine from my suitcase and put it in the plastic bag.  What I could not, at least at first, bring myself to explain in public is that, due to my refractory Crohn's disease, I suffer from fecal incontinence and must travel with a change of clothes and personal cleanings items.  In addition, one symptom of my Crohn's disease is very bad joint pain.  So I ended up with my purse and a US Airways plastic bag to carry around when I made my connection instead of a bag on wheels that would have been less painful.  As a result of the confiscation of my suitcase with my clothing and supplies in it, I traveled all the way from Los Angeles to Hartford with nothing to eat or drink in an effort to ensure that I would not have to move my bowels.  By the time I reached Hartford, I was so dizzy and light-headed that I had to ask for a wheelchair to take me to baggage claim, where I had to wait one-half hour for my bag and then get myself home in an extremely weakened state.

And after all of that, there was an overhead bin just behind my seat that was completely, totally empty.

When I got on the flight, I wrote a three page letter in handwriting and handed it with a copy of my business card to a flight attendant addressed to the pilot or senior flight attendant. It was completely ignored, at least until later.  During beverage service, I attempted to speak about this with the flight attendant, who accused me of being disruptive and said "do you want us to land this plane for you so everybody has to miss their connections?"  Clearly, I was requesting no such thing.  I repeatedly said that I have a disability under the Americans with Disabilities Act, and instead of affording me some dignity and respect, the flight attendant reported me to the senior flight attendant.  Apparently, asserting one's rights under the Americans with Disabilities Act is seen by US Airways as a behavior problem rather than a lawful request for accommodations.

I did explain the whole tale again to the senior flight attendant, who was the first person to show me any compassion.  She listened kindly, took my baggage claim ticket from me, and said that she would check during the flight to see if there was anything she could do to allow me to retrieve my bag in Philadelphia rather than make me wait to get it back in Hartford, separating me from my medically necessary supplies for a full 12 hours.  Approximately an hour later, she returned and said that a representative of the airline would meet me in Philadelphia. No access to my bag, but another person to whom I would have to disclose my private medical information.  Indeed, I was afraid to speak to anybody else; after being reported for being disruptive for doing nothing more than seeking accommodations to which I am legally entitled, I was now afraid to speak up for fear that I would not be allowed to board my plane from Philadelphia to Hartford.  In the end, there was no representative, but the senior flight attendant had finally read my letter and arranged for me to get driven to my connecting gate, for which I was grateful.

The awful embarrassment of having to discuss these intimate aspects of my health across two other passengers was compounded by the fact that the passenger next to me, who identified himself as a doctor despite his very young appearance, was incredibly cruel, chastised me for bothering the flight attendant, and then admonishing me not to speak to him again for the remainder of the flight, and telling me that if I am so sick, I should not travel.  Is everybody so cruel as to criticize a person with a disability who has done nothing more than to assert her rights under the law?  I only had to endure this because US Airways personnel would not listen to me at all when I tried to speak with them more quietly and privately before I got on the plane.

I have been sick for 36 years.  I have never been treated worse than I was on this flight.  Indeed, as I wrote this first during the flight, I was crying uncontrollably.  I did nothing wrong, but was treated like I was a criminal or just plain crazy.  Much to the contrary, I am a nationally renowned expert in chronic illness law.  I have participated in conference calls with the TSA about how important it is to accommodate passengers with disabilities, only to have this happen to myself -- an experience so humiliating as to leave me sitting on the plane in tears, wishing there was some way I could disappear.  My status as a leader in the disabilities rights community went out the window, leaving me the victim of illegal and cruel taunting and embarrassment.

As I am sure you know, the law protects people with disabilities and requires that we be accommodated.  Under the ADA and the Air Carrier Access Act, a disability is a substantial impairment of a major life activity.  Major life activities include bowel and digestive functions.  42 USC 12101, et seq.  I am substantially impaired in these major life activities and, thus, I am entitled to reasonable accommodations.  As soon as I identified myself as a person with a disability under the ADA, some solution that did not involve separating me from my medically necessary possessions should have been sought.  A healthy person could have been asked to check their bag instead of me. At the very least, US Airways staff could have spoken to me kindly and with respect.  And since it turned out than an entire overhead bin was left empty, I could have been allowed to keep my bag with me without inconveniencing anybody. Instead, what was a truly wonderful trip in which I was repeatedly and publicly recognized for my accomplishments as a role model for people with chronic illnesses --a great accomplishment for me -- ended with me in tears, humiliated, ostracized, scolded, reported as a behavior problem, terrified of having an episode of fecal incontinence on an airplane -- my worst nightmare.

Of course, there is no way to undo the damage that has been done to me.  However, if not for myself, then for the millions of people with invisible disabilities who fly every year, I felt compelled to pursue this as what President Obama might refer to as a "teachable moment." Your ground and flight staff were nothing short of cruel. I had to disclose the details of my illness -- fecal incontinence -- in public in order to try to secure my rights. Indeed, the only reason the senior flight attendant ever became aware of my ordeal was that a horrible, abusive flight attendant reported me to her – not as someone who needed help, but as someone who was disrupting beverage service.  And in the end, not only was there plenty of room for my bag on the flight, but I suffered one of the worst indignities I have ever suffered in the 36 years since my diagnosis.  I will not and cannot rest until I am comfortable that all of the US Airways staff with whom I came I contact are educated properly so as to ensure that they never inflict upon another person the indignity that they inflicted upon me today.

I cannot have been put through this humiliating ordeal for no reason.  The only way to make something come of this horrendous experience is to ensure that it will never happen to me or anybody else with an invisible disability ever again.  Thus, I wrote to your Customer Relations Department on May 22, 2012.  I received a telephone call from Cynthia, who said that US Airways is not required to allow me to bring my one carry-on bag onto the plane, and that I had been told that they track room for bags by computer so they know when the plane is full.  This is COMPLETELY FALSE – nobody ever told me that, and there was an entire overhead bin that was empty.  She told me that it was my fault for not taking my clothes and hygiene items out of my bag – in front of all the other passengers – and explaining my problem with fecal incontinence more publicly.  My fault?  It became apparent to me that she had not really read my letter, and that she had no interest in retaining me as a customer.  Thus, you are my last resort before taking action.

Please understand this:  I do this for a living.  I have written to airlines before on behalf of other passengers with disabilities.  We have always gotten apologetic, kind responses.  One man with my illness now has a right to use the first-class restrooms on Continental flights after he was prevented from doing so and we complained on his behalf.  We received a similarly satisfying response from Delta on behalf of another client.  Do not think for one moment that I am going to accept anything less than a satisfying response from US Airways when the passenger happens to be me.  Not only will I file a complaint with the TSA, but I will use all of my communications skills to ensure that the disability rights community knows that US Airways does not care about people with invisible disabilities. 

All I wanted was some recognition that the ground and flight crews were not adequately sympathetic with my plight.  I would have been entirely satisfied with a warm, genuine apology and perhaps some direction on how to handle a similar situation in the future.  What I got instead – so far – was a snide, unfeeling woman who could not have cared less what I had gone through.  Indeed, it is four days later and I am still sick and terribly upset.  Your customer service person made things significantly worse, not better.  Frankly, I am shocked that you would respond to a customer in such an offensive way.

Thus, I am giving US Airways one more chance to make this right.  I don’t want money or a free ticket or anything like that.  I just want an acknowledgement that I was treated badly, that US Airways is sorry, and that it won’t happen again.  Anything short of that is unacceptable.

Thank you.


                                                   Jennifer C. Jaff*

[1] I do not understand why I was in boarding group 5.  I had a window seat, so everybody in my row had boarded before me.  I bought my tickets months before the flight.  I was in the rear of the plane, which we were told would board first (which makes sense).  Had I not been put in group 5, none of what followed would have occurred.  However, it seems to me that all of your passengers have a right to bring one carry-on item with them on the flight.  If you had policed the people who got on the plane before me a bit better, making them check a bag when they had 3 carry-on items, and directing them to place small items like backpacks under their seats, none of this would have happened to me.

[2] I understand that US Airways is bound by the Air Carriers Access Act.  However, the definition of “disability” is the same under both Acts.

[3] I saw many passengers board with a roller board, a small bag, and a handbag.  None of them was stopped from boarding with three carry on items rather than two.  I, instead, had only a handbag and a roller board.


  1. Jennifer,
    I can TOTALLY relate to this. I've had to dump my meds into a little plastic bag, or give up my purse in order to board a flight. I was, at first, only allowed a purse as my one bag allowance. After I raised a fuss, I was given a small, white plastic bag in which to stuff my 18 medications.
    I have an ostomy, in addition to Crohn's. A problematic ostomy. I have to fly with a huge amount of supplies, even for a weekend trip because I'm never sure how many appliance changes I'll have to do.
    I DREAD flying, dread the TSA process (with my ostomy appliance), dread possibly waiting on the plane, as others have, for hours with no bathroom access. I just don't know what to say to you other than I am so sorry this happened, and you are NOT alone.
    What hope is there for those of us NOT familiar with disability law?

  2. It sucks. I have a BCIR and IC. I always tell them I have a dissability even though I don't think of it as one and I need isle, close to a bathroom. Southwest is the best when it comes to this so I usually only fly them. Otherwise lately I rather drive. I always take a huge purse and shove what I can in there. Meds take up the majority. I can't deal with a suitcase and TSA, bad enough they are assholes to begin with. The airlines aren't going to change, they don't care.

  3. It's deplorable how airlines treat their customers these days. If it were me in your position, I would file criminal and civil charges. I bet they would answer you then!

  4. I am so sorry you had such a bad experience. I bought a suitcase that said it was small enought to fit under an airline seat. When I board the plane I too was told my bag was to be stored under the plane. I panic because my meds were in the bag and I too have chron's not wanting to make a fuss and because the flight was about an 1 1/2 I just sat down. This was a different airline. I made it ok, but the stress was not good for me as most chron's patients know. I am lucky that my chrons is mostly under control but you never know when you will have a flare! I stress more about that and of course that alone can cause a problem. I don't want to stop enjoying life but because people look at you and you look fine they really do not understand how hard it is some times to do simple thing that most people take for granted. I appreciate your help for all of us who suffer disabbilities. Thank you.

  5. Dear Jennifer,

    Thank you for advocating for people like us with IBD and other hidden disabilities.

    I always tell a flight attendant when boarding that I have a medical condition that may require an urgent need to use the restroom. They usually have an inquisitive look and only once did an attendant tell me that I couldn't use it if the fasten seat belt light was on. Fortunately I didn't need to break any "rules" that flight. Flight attendants have moved their beverage cart for me several times.

    I always get an aisle seat as close to the rest room as possible and I carry my CCFA, "I can't wait", card that I have never had to use. Plus I carry clothing, medications and other supplies everywhere I go too, except on planes I have all of my prescriptions with me.

    I had one horrible "accident" that has made me anxious whenever and where ever I might not be able to make it to the restroom on time. My accident was years ago but I still have anxiety problems that require me to take anti anxiety medication every time I use public transportation.

    I could feel your horror in your letter. I am sorry you were humiliated, not once but repeatedly on the plane and then by the customer service representative. If these people do not understand how horrible the experiences were for you then I hope you do take them to court.

    Fortunately for me I've never been on one of their flights and I will continue to use the carriers that understand.

  6. This is ridiculous and insane. I am so sorry that you, Jennifer, had to endure this and I am sorry that there are hundreds of others who have to deal with this insanity and cruelty when traveling. US Air, should be ashamed, but they obviously don't care. It is just incredible that humans have no compassion or respect for others. Keep fighting Jennifer. We support you 100%.

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