I’m writing this with an attempt to both shine light on the disability discrimination my daughter faced while flying on JetBlue and protecting her privacy regarding her specific toileting needs.  As such, I have omitted details which I believe would violate her rights.

I am not exaggerating when I say that I could spend 100% of my waking hours filing complaints related to violations of the ADA (Americans with Disabilities Act) on behalf of Evelyn.  Not only that, but I wouldn’t be able to address every single way in which my daughter is discriminated against.

It is notable that Evelyn only uses mobility aids part time.  If she were a full time user, I cannot even imagine the level of discrimination that she would be subjected to.  Further, I have only a broad understanding of the ADA–therefore, only the most egregious violations hit my radar.

Evelyn is only eight–people are more willing to accommodate disabled children.  I am not disabled.  We have resources to challenge discrimination.  Most disabled people, adults in particular, do not have the time, energy, and resources to pursue violations to their rights–say nothing of the fact that they are routinely ignored and/or spoken over.

Because I am not burdened with a long history of violations to Evelyn’s rights–only eight years, I am typically able to gently educate people–given my position of privilege, I feel like I have a duty to do so even when I feel like laying on the floor and pounding my fists into the ground at the injustice.  In general, probably because Evelyn is a child, people are receptive and attempt to accommodate.  But every so often, we encounter discrimination that is so flagrant that I am left with no other option than to pitch a fit.

What follows is my account of one of the two most despicable cases of discrimination that we have faced in Evelyn’s eight years (the other being an experience at Disney World).

Two years ago, when we went to Florida to visit my husband’s parents, we flew on JetBlue.  JetBlue refused to allow Evelyn to preboard with other disabled passengers as she apparently didn’t look disabled enough–although she was a 60+ lb child riding in a carrier on my back.  This year, when we checked our bags, we asked the agent how we should ensure that Evelyn is able to preboard.  She told us that we should merely tell the gate agent–that it would be no problem.  We explained that we had done this previously and had encountered problems.  She told us that it would be no problem.  To make a long story short, on our flight to Florida, we were, again, denied preboarding.  We were able to board after those that purchased extra leg room etc.  This meant that there were already about 20 people on the plane, standing in the aisles, putting their luggage away, and creating further barriers and obstacles for Evelyn.

During our flight down, I discovered that it was no longer possible to provide Evelyn with  the safe and hygenic assistance that she needs in the bathroom because she had grown and the size of the bathroom on the airplane is the size of a postage stamp.  While in Florida, I did some research online as to how to accommodate Evelyn.  I learned that the flight attendants can help to create a safe and private space and that there might be a larger restroom at the front of the plane from folks with disabilities similar to Evelyn.

We were granted preboarding on our return flight–probably because we put Evelyn in a wheelchair instead of on my back.  As soon as we got on the plane, I explained the situation to our flight attendant, Alia.

She replied, “You should have called JetBlue prior to your flight to make arrangements.”   It wasn’t just her words.  It was the blatant hostility in which she uttered them and every word there after.

I told her that it is against the law for an airline to require to prenotification of disability.

She told me that she didn’t know and that she would check with a supervisor.

In the meantime, another flight attendant, Jillian, overheard our conversation and easily came up with an acceptable solution which she demonstrated.  She merely opened both of the rear restroom doors.  This resulted in a private space which sealed both bathrooms off from the main cabin and provided the space necessary to assist Evelyn in meeting her toileting needs.  We agreed that this was acceptable and settled into our seats.

Several minutes later, our fellow travelers had boarded and Alia returned.  From several rows away, Alia loudly informed us that a supervisor was coming to discuss our issue.  We quietly indicated that Jillian had provided a solution that was acceptable.  Alia began speaking to Jillian about it from the aisle–Jillian was in the galley area. Jillian discretely explained her solution to Alia.  Alia, with no regard for our privacy began to rebuff the solution.

She, again, with no regard to Evelyn’s privacy, returned to us and said something to the effect of, “I have two children in wheelchairs.  We always drive because of toileting issues.”

I again explained that it is against the law not to accommodate a disabled person.  At this time, I was speaking about the ADA as I was unaware that there is a different Act governing disability for air travel–the ACAA.

Several minutes later, a supervisor named Frankie made his way down the aisle.  With complete disregard to privacy, he asked us what the problem was.  We were completely mortified at his lack of discretion and quietly told him that Jillian had resolved our issue.  He demanded that we tell him the details of the solution–we quietly requested that he go to the galley and talk to Jillian about it.

He did so–again with zero regard for our child’s privacy.  He loudly rejected her solution and continued to reject it to us.  Loudly, of course.  He told us that the restrooms needed to be “sealed off.”  I explained that Jillian’s solution accomplished this and explained what she had demonstrated.  He dismissed it as a possibility.

At this point I asked him what we should do.  He told us that there isn’t a protocol for this.  I explained that this is a violation of my daughter’s rights as a disabled person, that the result of refusing to accommodate my child could potentially result in a health risk for both her and the other passengers if she does not have access to a lavatory.  He said there is not protocol again and left.

Alia and Frankie treated Evelyn and my family with a thorough lack of disrespect.  I cannot adequately articulate the manner in which their words dripped with scorn.  I feel strongly that they not only denied my child’s rights to reasonable accommodation but that they went out of their way to deny them publicly and with complete disregard for my child’s humanity.  When my child is subjected to such degradation, I am left with the overwhelming belief that JetBlue not only wishes to deny access to the accommodation of the most basic human needs– but wishes to publicly humiliate and punish my daughter and her family for daring to believe that she has the right to travel on one of its aircrafts.

My dear friend, Kassiane, is a disabled adult activist.  She often talks about not being considered a real person.  Her words echoed in my head during the flight and I cried angry, sad, and impotent tears.  Evelyn is not a real person.  For the rest of her life, she can expect to hostility and contempt regarding the accommodation of her needs.  She can look forward to the suggestion that she not do things like fly on airplanes because she is disabled.  She will be regularly dehumanized by public discussions around her toileting needs.  She will suffer the indignities and health risks associated with having her toileting needs disregarded.

Able bodied real people are not subjected to such affronts to their humanities as a matter of course.

Shortly after arriving home, I received a message from a customer support representative.  When I connected with her several days later, I was surprised to learn that she was lead to believe that the reason Evelyn was denied accommodations was due to safety issues.  She indicated that she didn’t understand how safety issues were a concern because no one uses a safety belt when using an aircraft lavatory.  The representative to whom I spoke was understanding and apologetic.  She indicated that she would research the situation and get back to me.  I sent her a followup email after reviewing the ACAA which governs the accommodation of disabled people with my complaints and desired outcomes.
Complaints
1.  Alia’s suggestion that we needed to contact Jet Blue prior to travel seems to violate the ACAA given the accommodation we requested.
2.  The implication that we should have driven rather than flown because of our daughter’s disability seems to violate the ACAA.
3.  Both Alia’s comment that she never had such a question and Frankie’s indication that there is no protocol highlight the fact that JetBlue staff are clearly not appropriately trained as required by the ACAA.
4.  The demeanor of both Frankie and Alia were hostile and their words suggested that our disabled child is not welcome to fly on JetBlue.
5.  The lack of discretion and privacy surrounding our daughter’s disability and personal care needs was dehumanizing and degrading.  I cannot imagine an able bodied person being subjected to such a public and hostile discussion around his toileting needs.
6.  JetBlue failed to make a reasonable accommodation for our disabled child.  Having both doors fully open would have provided the same level of privacy to my daughter and the cabin as would have resulted in an able body person closing one restroom door.
7.  The restroom doors on the rear of the aircrafts have the handicap insignia on the doors (I have a picture which I would be happy to provide if you need it).  This is misleading given the size of the bathrooms–a person requiring assistance and/or a transfer from a wheelchair to the the toilet could not be safely/logistically accommodated.  Thus the restrooms are not accessible.
8.  The result of JetBlue’s failure to make a reasonable accommodation resulted in unsanitary and unsafe conditions for both my disabled child and the rest of the passengers on that flight.
9.  I briefly mentioned yesterday that on our flight from Boston to Ft. Myers on February 21, 2015, we asked the employee who checked our bags how to arrange preboarding given the fact that we were denied this in 2013 on a JetBlue flight (I believe I filed a complaint at that time).  She told me to ask the gate agent.  We identified our daughter as disabled at the gate but were not permitted to board prior to those that had purchased extra legroom and those that had status on your airline.  We were only permitted to board when families with small children boarded.  During our conversation, I believe you used the term “silent board” for the type of board that the ACAA mandates Evelyn is entitled to. This was problematic and resulted in difficulty navigating the aisle due to the passengers that had already boarded.
9.  After reading the entire Act, I learned that a CRO should have been made available to us by phone or in person in Ft Myers after we told both Alia and Frankie that our daughter’s legal rights were being violated.  This did not happen–unless Frankie is a CRO.  If he is, I am requesting that JetBlue confirm that he is a trained CRO and that he has had the training required by law.  Further, if he is, I am wondering why he didn’t identify himself as the airline’s CRO and am expressing my concern that he did not fulfill his duties in this important role and certainly did not demonstrate that he had the training, experience, and communication skill required to resolve complaints related to disability discrimination.

Desired Resolution
1.  That JetBlue develop and share with us a concrete plan for a mandatory and comprehensive training its employees regarding disabled passengers.  The plan should include paid consultation with disabled people representing various types of disabilities (including invisible disabilities like Autism) and consultation with and approval of organizations which are primarily comprised of disabled leadership.  My family is very involved in the disability rights movement and I am happy to provide you with the names and contact information of both disabled leaders and the names of various organizations with whom you may wish to consult.  I believe that disabled people have the most valuable input to provide with regard to the creation of a plan.  However, caregivers may also offer good information from a logistical standpoint.   As the caregiver of a child with multiple disabilities, I am happy to provide (unpaid) input/feedback around the development of a comprehensive training and/or the names/contact info of other caregivers who provide assistance to disabled individuals (both adults and children).
2.  Specific actions taken by JetBlue to address the hostility directed at my child and me by Alia and Frankie.
3.  Compensation for the violations to my daughter’s rights as a disabled passenger,the discomfort and health risks my daughter suffered as a result of being forced to sit in soiled undergarments, the dehumanizing treatment she endured, the embarrassment my entire family suffered due to your employees’ lack of discretion around the discussion of her disability and toileting.

I asked that JetBlue let us know its intentions by March 17th and indicated that we would pursue a DOT complaint and civil legal recourse should JetBlue not choose to attempt to rectify this matter to our satisfaction.