Everyone gets a seat, except May. Fair enough?

Posted on Aug 27, 2012 | 15 comments

This week, on BabyCenter, I wrote about a news item that featured a young lady with disabilities who was denied use of her iPad on plane. She can’t speak, so she uses it to communicate. Regulations meant she couldn’t have it – even if she switched it into airplane mode.

There is a point when regulations cause more harm than good. A couple of weeks ago, I saw our luck take a turn for the better, but that is a very rare experience.

In the post, I wrote about a time when United Airlines refused to let us use May’s car seat on a plane. The car seat is a popular brand and one that, I believe, is FAA compliant. However, on the plane, we couldn’t prove it, so they made May ride on our lap the whole flight – a far riskier proposition. I also referred to a time, on a flight about a year before this, when they refused to refrigerate her medication.

Unlike on Mama Lewis, where people come to read because they are interested in May, on BabyCenter, people read me because they are interested in babies. They don’t necessarily care about me. That makes for an altogether more honest response and people don’t always agree with me. I don’t mind. That’s the job.

But, in this case, someone responded who I felt was particularly callous towards May’s health. The comment begins (and I’ve shortened it for this post):

1.) You’ve traveled a lot and had several terrible interactions with the airlines, yet you totally relied on someone on the phone when they said that storing your daughter’s life saving medication wouldn’t be a problem. And you believed them? If I HAD to travel with life saving medication and it HAD to be kept cooled, I would not have relied on some total stranger taking care of that for me. Nope.

2.) Your could not prove your car seat was FAA approved, but you wanted to use it anyway. If I, an American without a special needs child, purchased a car seat at a second hand shop and I couldn’t prove it was FAA approved, should I be allowed to use it? On what basis are you expecting this busy person who doesn’t know you or your situation, to allow you to use a non-approved car seat. Sure, if you look at the seat maker’s website, it looks as if it fits the requirements, but the attendant has no way to know that.

I smpathize with the challenges of traveling with a child in general, on top of the additional challenges May faces. Sadly, I don’t think it’s reasonable of you to ask that specific rules be ignored for her beneift.

While it’s true that the rules have not been consistantly enforced, they are still the rules.

Is there a lesson to learn from our experiences – as this person implies – that we should trust no one, depend on no one, other than ourselves?

I wish I could say theirs is a lone voice. But, many people feel a kind of zealousness, that they must set the world aright over issues like the disabled demanding and receiving special treatment. They don’t understand that treating May “equally” is not equal; in this case, it put her in harm’s way. People like this lack perspective; they place more value on the time of a “busy” worker than the safety of a disabled child.

Really, it is not the regulation, but the people on the day who decide whether May’s safety will be paramount or not. And, that unpredictability is frightening.

I didn’t respond. Should I have? And, what should I have said?

Photo: Flickr (nathanmac87)


  1. I tried to comment over at Babycenter, but the captcha ate my comment <_<

    1- They are a stranger to YOU, but they're a representative of the company that's supposed to be serving you. I'm sure that if you had been told that you could not store May's formula, you would have planned accordingly. But you did check. Who ELSE are you supposed to talk to when you have questions about your travel arrangements?

    2- The "busy person" has business because they're working for the airline that's supposed to be serving you because YOU PURCHASED their services. It is THEIR JOB to serve you and ensure your safety and comfort. Their refusal to let you use the carseat is not because May is disabled; they probably would have done the same if she was not. It's just that it's doubly unsafe for her.

    The thing is that, the way you tell it, you don't unilaterally run around expecting people to bend over backwards for you and make "exceptions" because you have a disabled child. You check things out, do your homework ahead of time, only to be told one thing and have something else happen. That person's points are ridiculous, in my opinion, doesn't deserve a response, because people who make ridiculous points can't be made to see reason. But you have all the right to defend yourself and May if you want.

    Also, I am consistently amazed that you travel internationally to see your family. I flatly refuse to go anywhere near an airport with my kids. I don't know how you do it :)

    • Thanks for this response Pennie – and in regards to your last statement, I go back to the airport tomorrow to fly back to London and I am DREADING IT. I would flatly refuse as well, if it wasn’t for the fact that May’s daddy was waiting on the other side to give us all a big hug.

  2. You are one of the best advocates for May. I would keep doing what you are doing.

  3. Wow for #1 I would guess IT is not a Parent, since IT has no compassion for what you have gone through when it comes to flying. I would of responded by saying, “I was trying to prepare for my flight with getting rid of some of the hassle ahead of time. Even though I partially knew they could change their mind the day of the flight. A parent as myself with a special needs child I try to be prepared and your comment in caps makes it seem that you have no idea how hard it is to travel the way I do. I would assume other things about you but I was raised to be nice so I won’t put in capital letters what I really want to say back to you!” Yeah that’s what I would say!

    • Next time, I’m sending you in to do my fighting, Carrie.

  4. I hate to bash Americans (I am one, after all), but in this case that line of thinking is something that I find so dishearteningly common in the States. Maybe it’s the pioneer mentality and the personal responsibility narrative gone bonkers together. Whatever it is, I hear this line of reasoning a lot. It seems to me, though, that there ought to be more accounting for the fact that few people are completely self-sufficient and, in the case of a parent of a disabled child, it is simply cruel to ask them to be. Everything you do is harder; I’m appalled that this commenter’s response was that you should have done even more.

  5. I can not imagine why it would matter if a car seat was FAA approved or not…..as long as it fits in the seat!
    There is so much to do with air travel that is anxiety-producing (crazy people, powerlessness, what if they won’t let me on my flight….)
    A little pleasantness would go a long way!

    Hope your trip home is amazingly smooth!

  6. I say you can’t judge others because you haven’t been in their Shoes. No one but your family knows what it’s like to travel with May. Traveling with children is different for each of us. So I say no judging because I haven’t been in your shoes or had to travel with May. You seem to have done what you feel was in your daughters best interest and advocate for her and that’s all we can really do as parents. I have found the airlines to be less than helpful when traveling with my two year old, so I can only imagine what it’s like to travel with a special needs child. Props to you for even braving the unfriendly skies!

  7. Some people are just black and white by nature. A rule is a rule and they can’t step back and look at the situation in context. Others are bitter because they once needed an exception or help and it wasn’t given to the, so they are out to punish all. Then there isthr majority, who just have never been in a similar situation or taken the time to consider it.
    Good luck and safe travel heading back home.

  8. I’ve never posted here before, but the comment you posted by that individual just riled me up and I had to respond! Rules are rules to enforce a general sense of order but are not made to be blindly followed without some analysis by an individual around the appropriateness of the rule in that specific situation.

    Of course the “rules” needed to be adjusted for you and May, it just makes sense. If someone listened to what you are actually asking it takes very little to see that you are not trying to just get chilled milk for your latte or more leg room, you are trying to take care of your child.

    • I read your comment, Katie – on the original post – and well-said! I don’t understand the lack of empathy in some people. It is shameful.

  9. Ugh. I just wanna puke reading what that obnoxious commentor wrote. I don’t think it would have benefitted anyone had you responded to such asinine bullcr*p. Someone like this is probably suffering from poor self-esteem, and just plain ugly.

    But, on the flip side of the coin… I do sort of “get” how the airlines are attempting to guard themselves against liability. Their goofball rules serve to decrease the possibility that they, in the event of a disaster, could be held responsible for ANYTHING in a court of law. Is this defensive behavior the chicken or the egg of the problem?

    It just takes one bad apple (or ugly person) to spoil the barrel, doesn’t it?

    • I’m with you on the “puking” but I’m afraid I don’t buy the “one bad apple” concept. This is how ridiculous legislation like this passes. Do we hurt some people because there will be one bad apple who will take advantage of the situation? (As if using a car seat was taking advantage – but this is how people think.) I thought about the liability angle too. I wonder how much these rules would protect airlines from liability if a disabled toddler like May was seriously injured on-board a flight?

  10. I am new to your blog and am pleased to “meet” you and your family :) i look forward to reading more about your adventures! We live in Australia and travel a bit to Asia with our son who has CP ( athetoid quad) our 4 year old and our nearly one year old :)

    • Australia to Asia – well, depending on where you start and end up, I suppose that would be about my journey to Michigan, or twice as long. I guess you are sympathetic towards my flying issues!

Leave a Reply

Your email address will not be published. Required fields are marked *