Can you pick out everyone with a disability? What does a disability look like?
I had two experiences recently involving assumptions about someone with a disability. Sometimes certain disabilities are called “invisible illnesses” because when you look at someone, they might look happy, healthy, and fit. But you may not realize that inside them, they have Crohn’s disease, fibromyalgia, dystonia, or even a severe peanut allergy. Or even … Hunter Syndrome … Sanfilippo Syndrome … Hurler Sheie … etc.
Case looks and acts so “normal” sometimes that I have to fight for his needs in the face of assumptions that he can act, walk, talk, and behave like a typical child.
Take a look at both of these situations. Has anything like this happened to you? How did you react? Have you made any of these same assumptions about others? At the end, I touch on several helpful thoughts about how to prepare for others’ assumptions about you or your child’s sometimes “invisible” illness.
Situation 1: We have flown through the Nashville and Raleigh-Durham airports for 22 months straight now. Case is used to staying in his Special Tomato stroller through security, getting a patdown, and getting gloves as a reward. Only three times have we ever walked him through security, once was a disaster and twice were okay. But the stroller is the safer bet to prevent a run, grab and all alert security call. Especially… if I’m doing it all by myself.
So the TSA has apparently introduced new procedures for hand screening children under 12, I believe, and it involves calling in a supervisor, etc. We’ve had no problems with this other than a slight delay in Nashville. However, in RDU, it involved a 30 minute wait, occupying Case in a small area with other passengers constantly stopping and walking by. They apologized and I explained that as long as he was fine (and he was, watching videos), I was too.
But last month was a different story. I asked for a male assist, as I always do, and then pushed Case around the metal detector, as they always do; however, then a seemingly bothered TSA agent said that I needed to just carry him through the metal detector. I insisted that I understood that there were new procedures, but that this was what he needed and was comfortable with and I wanted to continue with a hand screen.
He then said that I needed to carry Case through or if not, he’d have to make a lot of calls and it would “take a long time.” His manner was quite annoyed and displayed an annoyance at the prospect of being bothered in such a way.
I controlled my anger. I explained again that my son (and I) were not comfortable with that procedure and he should go ahead with the calls. He was clearly annoyed.
I was clearly annoyed.
It took 45 minutes and yes, I did receive an apology.
Update: We flew a few days ago and interacted with the same gentleman from last month. He was much kinder and the whole process took only 15 minutes instead of 45. Hopefully, if enough people stand up for the needs of their children, airports and other locations will be forced to adopt policies that make things less burdensome. Remember, there was a time when there weren’t handicapped accessible entrances to most buildings…. It is only through determination that change can happen.
Situation 2: On that same occasion, we were waiting to board a Southwest (no assigned seats) flight with a disability pass. Case would be extremely challenging to wait in the lines and he really needs to sit by a window in order to prevent him from being all over touchy to the person next to him.
We stood behind a family with a grandmother, mother and daughter.
They went down the jetway before us and a woman stood at the front of the A group watching and then her statements to the Southwest representative, “Why are they boarding? What is their problem? I paid for a select ticket and why are they boarding before us?” Southwest representative, “The daughter has a peanut allergy.” Lady: “Peanut allergy, seriously? She can board for that? I’m not good with peanuts, can I board? I paid for a select ticket and she should not get to board before me.”
As we passed the lady, we also were recipients of the evil eye as she looked Case’s stroller up and down and made a comment under her breath about children. I’m sure that to her, Case looked whole and healthy as he watched his DVD player.
In fact, as I was packing up the stroller at the end of the jetway, blocking Case from running up or down or grabbing the controls of the jetway, as he’s been known to do, she strolled on by us to enter the plane. The next folks, kindly, waited for me to finish, so then I was standing right behind her as we entered the plane.
Lady to flight attendant, “I can’t believe you let someone on the plane early for a peanut allergy, that is just ridiculous. I will be complaining to Southwest. I paid $600 for my select ticket and that is just ridiculous.”
Sadly, the family was sitting right there and heard her very rude comments. The mother noted that, in fact, the grandmother normally uses a wheelchair. I decided to also remind her that Southwest still serves peanuts on the plane. So the protection of a child with a peanut allergy is an important issue. The lady was still annoyed.
Who is right here? Do we make assumptions about people’s abilities, disabilities or lack thereof based on how they look? If we do, should we be rude about it?
Some lessons: If a situation like one of these happens to you, here is some advice for advocating for you or your child’s needs, especially when the disability is not obvious: