Air Travel With a Disability: Fitting a Square Peg Into a Round Hole

Mike Naple avatar

by Mike Naple |

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“This is humiliating,” I said to the security agent waiting for his colleague to arrive to run a test on my portable oxygen concentrator. The agent asked if I wanted to continue the screening in a private room. Unsure of how many people might be looking in my direction, I said no, that I would rather get through this as quickly as possible and catch my flight.

Going through airport metal detectors is often a tedious, cumbersome experience for everyone. I can already hear my partner kindly reminding me to register for TSA PreCheck from the Transportation Security Administration. Flying is more difficult, physically and emotionally, for someone disabled and chronically ill. Flying with medical equipment only exacerbates the process.

I’m no stranger to an extra layer of security screening. I have a Harrington rod fused to my spine to treat scoliosis, and that bad boy usually raises eyebrows from the detectors. I step to the side, turn around, raise my arms, and the security agent pats down my back. This process comes with plenty of discomfort, and I don’t always have the patience for it. But I know what to expect. The metal is part of my skeleton. Removing it would be worse than a thousand screenings.

My pulmonary hypertension (PH) diagnosis brought with it the need to make adjustments to ensure I could maintain a good quality of life while still treating and managing the disease. Travel is one area where I’ve had to make changes to ensure I could still fly or take a train for both pleasure and business purposes. Readers of this column will know that I’m not always a big fan of change, that I sometimes take the long way around.

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Whether leaving from an airport or a train station, I’ve long preferred to arrive early — to get myself situated, grab a snack or beverage, and maybe peruse the newsstand or bookstore — rather than be one of the adrenaline junkies who wait until the loudspeaker calls their names right before departure.

Since I don’t move as quickly as I used to, I like to give myself plenty of time between the commute and the various checkpoints before arriving at the gate. I’m grateful that once settled, my partner will offer to go retrieve coffees or other food items.

Gone are the days when I would sprint to make a connecting flight boarding on the other side of the airport, arriving just before the attendant closed the jet bridge door.

I remember one time, before my diagnosis, when I ran to make a connection in Denver. Arriving at the gate, I could barely catch my breath. I felt dizzy, and my chest was tight. At the time, I chalked it up to Denver’s higher altitude, not realizing I was experiencing many of the same side effects of a PH-related flare-up.

One tool that improves my travel experience is the portable oxygen concentrator. Wearing it reduces the chances that I’ll be out of breath, yet I don’t always do what’s best for me. For a long time, going through security checkpoints, I wouldn’t wear the concentrator because I’d feel shame, embarrassment, and a sense of otherness. Just putting the device on the conveyor belt caused delays and its own set of questions.

I knew that when I refused to wear the concentrator, it was because of my own struggles with internalized ableism — even though it was more than obvious that the concentrator improved my well-being.

In last year, I’ve started to wear my portable concentrator to go through the metal detectors. I’ll also request use of a wheelchair if I’m feeling low on energy and the walk to the gate is on the longer side. Life is short (something those of us with chronic illnesses know all too well), and I made a commitment to myself that I would do more to prioritize my health. Of course, this will result in some uninvited stares and attitudes from unsavory people.

Disabled travelers have fundamental rights, and both airport and airline operators have federal obligations to provide an accessible experience. Still, being a disabled traveler can feel like I’m a square peg trying to fit into a round hole.

But it’s not the peg that needs fixing; it’s the hole. That’s something I’m reminded of during Disability Pride Month, celebrated every July to mark the signing of the Americans with Disabilities Act and raise awareness about the fight for disability rights.

As I tweeted after that last experience, “Airports and the flying experience always remind me how this world isn’t built for disabled people, that we must fight so hard for even basic dignity while traveling. A portable oxygen concentrator is a mobility/breathing device. It is not anything dangerous.”

Follow Mike on Twitter: @mnaple.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Cathy Brown avatar

Cathy Brown

I just flew for the first time with oxygen and with the wheelchair. Wow, that felt weird. And not in a good way. I would love to talk with you about how it feels trying to maintain a professional life while toting oxygen. I work 100% remote and although my immediate teams knows, most of my coworkers have no idea I have this disease or that I need oxygen.

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Barbara Thomas avatar

Barbara Thomas

I am a PH patient living in New Zealand, originally coming from Germany.
So I used to do long haul travel. All was good, no Oxygen or Iloprost inhaler need, until recently when my disease got worse. I am not on Iloprost inhaling every 3 waking hours. I have not travelled with this yet, but I wonder whether anybody (maybe you before you started on Oxygen?) has experience travelling with an inhaler?
All the best for everyone reading this, cheers, Barbara

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Tracy Strong avatar

Tracy Strong

Thank you for this timely article. I just got back from a road trip. The first with my O2 bottles. I also feel an "otherness" when using my 02. I tried to take my regular concentrator, but it's too heavy to lift. I haven't gotten mentally to the stage where I want to invest in a portable. YES, I need it. But, it's been my greatest fear to be connected to oxygen. I use it in the comfort of my home or when I go to health care visits (mainly because my doc's ask me about it, not in a bad way, I have wonderful docs).
During my vacation, I only used it in an area where I knew there would be hills. I felt like I was taking up the entire sidewalk (I wasn't) and felt obvious, but better.
This disease is so much about mental health. The struggle with loss of function is as hard on my psyche as physical.
Again, Thank you for your article.

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Jen Cueva avatar

Jen Cueva

Hi Tracy,
Oh, my heart is with you as I can relate to so much of how you're feeling. I've been there. I'm almost 18 years post PH diagnosis, so it's taken me some time. I started to like you; I rarely wore my O2 in public because I didn't want others to see me like that. But once I learned how much oxygen benefited my body, I started using it more often. My mindset was that it was for my health, which was a top priority. Take one day at a time, and maybe you'll too get there. My PH team and family were my biggest support for this reminder.

You're so right, PH affects us not only physically, but our mental psyche also takes a toll. If you haven't yet joined us in the PH News forums, we would love to have you. I co-moderate the forums, and it's a supportive place to read others' experiences and ask questions. People have been through or are going through similar challenges. It's a safe and fun environment, too. You can join by signing up with the link below. Feel free to contact me if you have any questions about creating an account, but it's a simple few questions, and you're ready.

PH News forums

How are you feeling after your road trip? Road trips can be exhausting too. Rest up and take care of yourself, my PHriend. One day at a time.

Kindly,
- Jen

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