Standing up for “invisible” illnesses

Posted Monday August 20, 2012 by Melissa

Case on a plane

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.

Case on a planeSituation 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:

  1. Be prepared. Be familiar with the objections others might have to certain situations and be able to explain your position. For example, I know that others might see Case running around before boarding a plane and wonder why he then would ride in a stroller/chair and board with a disability pass. My trite phrase, if needed, is that he has a genetic condition that causes cognitive and behavioral challenges. He can be difficult to control and doesn’t understand many social norms which requires that he board early and sit in a particular location. I say it, leave it at that, turn and move on.
  2. Don’t be ashamed. If you’ve thought it out and stand behind your position, refuse to be ashamed for any unique treatment you or your child receives. I don’t fight the system to make anyone else’s life difficult. But I’m also not going to make Case’s life difficult simply to make someone else’s convenient.
  3. Explain what you need, why you need it, and the condition. If you’re prepared, this should be no problem. Try not to cry while you’re doing it (tough sometimes, I know). Don’t be wishy washy. Decide what you or your child needs and make it happen.
  4. Stand up for your needs, even in the face of annoyance, challenge, and incorrect perceptions. You may have to repeat yourself, multiple times, and to multiple people. You may have to explain it differently. You may be told you’re wrong. Especially if you are advocating for your child, know that you are their voice and although you should be respectful, anyone else’s annoyance is not the priority. I think I explained myself at RDU to 3-4 different people, finally leaving almost 45 minutes later. But Case was happy, sitting in his stroller watching a video. Thus, I accomplished my objective.


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5 Responses to “Standing up for “invisible” illnesses”

  1. Oh My – the looks we got at Disney with a disability pass! VERY evil looks! At first it was making me feel so guilty, and I felt the need to explain, but by the end I was quite relaxed into my, “Well, it’s none of their business, anyway” mode.

    Once again, Melissa, you hit the nail on the head. This is exactly what we are facing with Shae at the moment. I love this line…”I don’t fight the system to make anyone else’s life difficult. But I’m also not going to make Case’s life difficult simply to make someone else’s convenient.”

  2. Melissa, there are times I use a handicap card at malls or stores on bad days and I often get stares and have at times asked people if they have a problem (those staring at me, rude on my part and not quite right of me but worse on their part to assume). Ive also had atleast 1 person get out of their car and tell me I shouldnt be using someone else handicap car in my car if they werent along to which I responded as the person was following me in to the post ofc (and I was clearly walking slower) all about invisible illnessess/disorders, not judging someone by their appearance and if she as a person really thought I was ‘faking it’ then perhaps she’d like to know even more about what MPS and all the surgeries are like and I handed her my APF card which had my website on it. She was dumb-founded, almost speechless and clearly felt bad + apologized. People just dont stop to think.

    I think though we are all guilty of it to some extent, even in the rare disease community i’ll get stares or questions about how I really mustnt have that many issues and how could I have all these surgeries but people and all of us I think to some extent are gulty of not realizing people adapt to what they have and some days are good days, some days are not as good and we all bounce back or deal w our disorders and diagnoses in diferent ways.

    Together we all make a difference one by one, group by group. 🙂

  3. I LOVE this post. My son is “undiagnosed,” but is medically complex. The vast majority of his problems don’t show on the outside to an observer. He has a g-tube that is hidden by his shirt, uses a C-Pap at night (airway obstruction due to late-onset laryngomalacia), and fatigues easily so he has difficulty walking long distances. He doesn’t use a wheelchair, but we often use a stroller or carry him long distances. His hearing aids (progressive mixed hearing loss from birth) and glasses are really the only visible sign that he has anything “wrong.” For the most part, he looks and acts like a typical five year old to the casual observer. So when he has a meltdown and we carry him or gags/chokes on food, we get odd stares. Many people have “invisible” disabilities, and the first thing you learn when you have a child who has medical/developmental needs is DO NOT JUDGE. You have no idea what a child or family is dealing with!

    • Leah, thank you for your comments. Yes, I think once we have these experiences, we learn to not judge others based on appearances. What we used to think of as a “bad” child at first glance, could be a child with autism, sensory processing disorder, MPS or undiagnosed. Sometimes, part of me wishes that our children could wear a shirt that says, “Cut me some slack. I have unique challenges.” but then on the other hand, I wish they just didn’t have to, that it would be part of people’s natures to give the benefit of the doubt.