7/24/2018 by Share Your Story

Feeding Tube Travel Troubles with the TSA

If you think the US has done enough towards accessibility for disabled people, Carolanne Monteleone asks you to think again the next time you are at the airport.


carolanne vacationAccessibility is an issue everywhere. If you’re able-bodied, you probably have never noticed or even thought about how difficult it is for someone with a chronic illness or disability to navigate everyday experiences. For example, we all know that the security check by TSA  (Transportation Security Administration) at the airport is a pain but a necessity for our collective safety. What you probably don’t know is that TSA and airports don’t really know how to handle someone who is disabled with dignity. You’re probably thinking to yourself, “well that’s not hard! Just treat them like everyone else!” And while that is a grand notion, the truth remains that disabled folks, like myself, require different accommodations.

I recently had an encounter at the Philadelphia airport that almost left me in tears and definitely made me feel belittled and dehumanized. I have a chronic illness, gastroparesis, which translates to “paralyzed stomach”. Subsequently, I require a feeding tube in order to survive.

ACCESSIBILITY AT THE AIRPORT

I’ve traveled with a feeding tube in the past and didn’t have any issues but this time was different because I needed to take my formula, medication and other equipment through security with me. Medical supplies fly for free and you’re allowed to take more than 3 ounces of liquid in the same container. But just to be on the safe side, I called TSA ahead of my travel date, explained my situation, and they assured me that I would have no issues when it came to getting through security.

TSA SECURITY CHECK

On the day of my flight, I arrive to the airport. Multiple staff told me that the carry-on for my medical supplies was too large and TSA probably wouldn’t let me through with it. I told them each that I had called ahead of time and was assured I’d have no issues. Once at the entrance for security, I was told by a TSA agent that I had to go through the disability screening line if I had medical supplies otherwise, yes, the carry on was too large. But in order to go through this line, I had to be in a wheelchair. I’m not a wheelchair user except on a few occasions where my body is too weak to move on its own.

Instead of arguing, I swallowed my pride and went downstairs to ask for wheelchair assistance. The two workers tried to pawn me off on each other right in front of me, as if I was deaf or incapable of understanding what they were saying. Ultimately they did help and I was on my way through security.

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MANHANDLED BY THE TSA

Of course, I was pulled aside for further screening and they flagged my medical suitcase. Once the TSA agent rumbled through and tested all of my medical supplies, she then informed me she’d have to give me a full body pat down. I showed her my feeding tube by lifting my shirt to expose my abdomen and asked her politely to be careful and not touch that area. She did anyway. It was invasive and degrading.

There has got to be a better way to do this.

DISABILITY AND THE TSA (for now)

While we work to spread awareness and get better accessibility in place, here are some tips from the Feeding Tube Awareness Foundation that can help prevent a situation like this happening to yourself or a loved one.

  1. Get a letter from your doctor explaining your medical condition. Also make sure to document all the medical supplies and equipment you will be traveling with. This can assist you through security and act as a form of advocacy.
  2. Talk to your homecare company. It’s possible they can deliver supplies right to your destination so you don’t need to travel with it. This save you the hassle of lugging heavy equipment and avoids the difficulty of getting through security.
  3. Contact the airline and TSA 72 hours in advance. Some airports can provide you with an advocate who will go through security with you.

The most helpful solution is to print a Disability Notification Card (HERE) that is provided by the TSA directly. Print this card, fill in your condition and present it to the TSA for situations like this. Being prepared will help make the best out of a difficult situation.


Carolanne Monteleone is a disability advocate and professional sick person. Between blogging her experiences with chronic illness, running a small Etsy business of handmade feeding tube accessories, and helping others transition into the world of disability, she spends what little time she has left being a stay-at-home dog mom to an adorable beagle, Quinn. Carolanne enjoys sewing, shopping for candles, and binge watching medical dramas.


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