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    Planes, Trains, & Accessible Travel With SMA

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    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 3 replies, has 4 voices, and was last updated by  Halsey Blocher 1 month, 2 weeks ago.

    • Author
      Posts
    • #20425
       DeAnn R 
      Keymaster

      The last time I traveled by air was when I was in junior high. Dad could still shloop (it’s a real word isn’t it?) me into a regular seat. We opted to take my manual chair. It was rather difficult back then, I won’t even attempt it now. Unless and until we can stay in our chairs, I won’t be flying.

      Here’s a great article that points out the double standard airlines have when it comes to safety. Although they know it’s unsafe, they allow infants to fly unrestrained on their parents lap. Yet, airlines don’t allow wheelchair users to remain in their chairs citing safety concerns. Big double standard. Studies are showing that in all reality it can be quite safe to stay in our chairs with proper restraints.

      My suspicion is that it all boils down to money. It’s too expensive to modify the planes to accommodate a wheelchair. Airlines are probably fearful they wouldn’t be able to maximize capacity if they have to make wider aisles, bigger bathrooms and loose a seat to make room for a wheelchair. Citing “safety” in my opinion is a total cop-out. It’s the easiest way to shirk the responsibility of finding a real solution.

      It’s difficult to express how vulnerable an individual feels when separated from their chair. No analogy I’ve come up with even comes close in comparison. The only thing I can think of is boarding the plane naked. I’d love to see how comfortable the airline big wigs would be if they were required to strip down to their birthday suit before getting on the plane. Then having to sit there the entire flight butt naked. I’m sorry, is the seat scratchy? Is there a draft? Well that’s too bad.

      Furthermore to risk your chair being damaged or heaven forbid be lost is something I can’t even fathom. Airlines seem to shrug it off like it’s no big deal. In my analogy imagine getting off the plane expecting your clothes. Oh sorry, the conveyor belt shredded them. Here’s where my analogy falls short. You can just stop and buy new clothes. A wheelchair, not so much.

      Do you fly? How have your experiences been? Would you travel more if you could remain in your wheelchair?

    • #20432
       Ryan Berhar 
      Keymaster

      It’s so ridiculous. Thank you for bringing more attention to it!

    • #20433
       Tracy Odell 
      Participant

      This is a huge issue for me, and one I have shared about on an earlier forum.

      Most recently I watched a TED Talk by Founder and President of All Wheels Up, Michele Erwin.

      Here is the description: Erwin’s interest in accessible air travel began when she realized travelling with her son who has a severe physical disability and uses a wheelchair was not safe. All Wheels Up is the only organization in the world currently crash testing wheelchair tie-down systems and wheelchairs for in-cabin use. She led her organization from a small grassroots movement to being a leader in its field. Michele is involved with working groups, which include the European Union, United Kingdom and a part of an informal coalition for accessible air travel in the United States. All Wheels Up has the support of many organizations advocating for the disability community and with major stakeholders of the industry. With her commitment, what was once an impossible discussion is now an important topic of conversation based on research and facts.

      It will take a concerted effort from all of us affected – and our families, friends and allies – to press airlines to do the right thing for those of us who can only fly safely in our wheelchairs.

    • #20456
       Halsey Blocher 
      Participant

      I have not flown since I was three. It’s simply not possible to sit safely and comfortably in an airplane seat! Even if it was, I would never let my chair out of my sight! I have met so many people who’s chairs have been damaged or destroyed. I’m certain it all boils down to money, but I honestly think airlines are making a huge mistake. If they started making planes wheelchair accessible it will open the industry up to a whole new group of clientele. I think that they would find that they wouldn’t have a problem filling planes. I know so many people that would travel if planes were accessible. I, personally, would love to travel more, but I wouldn’t dare risk something happening to my chair.

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