Navigating Air Travel with a Disability

When I had a stroke in May 2017 that left my entire left side paralyzed, I was forced to reinvent myself. As someone who now suddenly dealt with mobility challenges, the resulting foot drop from my stroke did more than change my gait—it impacted my independence, and more specifically, my ability to travel. The world suddenly felt smaller to me, and much less accessible. Airports, once my portal to great adventure, became confusing and tiring labyrinths I dreaded visiting. In an airport, there were simply too many factors outside of my control. Long security lines, unpredictable distances between the security line and my gate, cramped bathroom stalls without grab bars, lack of elevators close by - all of these unknowns that I never used to consider were now hugely limiting factors to my ability to travel.

But since I was quite motivated and steadfast in my desire and efforts to regain my independence (read: stubborn ;P) I worked hard to find ways to achieve independent travel. Read on for my comprehensive summer air travel guide-from pre-flight preparations to reaching your final destination safely and with confidence.

Planning, Planning, Planning

One of the most significant adjustments after my stroke has been accepting that travel now requires substantially more thought and planning than it used to. What was once spontaneous now demands careful consideration and preparation. I've learned to embrace this reality and find a version of travel that works for me.

The days of last-minute bookings and carefree exploration have been replaced with detailed itineraries, accessibility research, and contingency plans. While this might seem overwhelming, I've found that this extra planning actually improves my travel experience by eliminating many unpredictable variables that could otherwise derail my trip.

For example, before leaving for a trip, I will sit down with my phone, open the Notes app or Google Keep, and make a checklist of everything I need to bring with me. From clothes to makeup and toiletries, to thinking through which mobility aids to bring that are best suited for the climate and terrain, to chargers, medication, books, or my FlyKitt jetlag kit.It is important for me to take the time needed to Think Through all the potential situations I might find myself in and the things I might need for it. There's nothing worse than being caught in the rain without a rain jacket because you forgot to look at the forecast and therefore didn't pack one (has happened to me countless times lol).

Pre-Flight Planning: Setting Yourself Up for Success

Documentation and Medical Clearance

If you are new to air travel post-injury, before booking your flight, consult your doctor or physical therapist about your travel plans. It can be helpful to keep a brief medical letter if you have a mobility aid like a Neural Sleeve or Bioness.

Choosing the Right Flights

In the eight years since my stroke, I've learned to be strategic about flight selection:

• Direct flights (when possible) eliminate the stress of making connections under time pressure
• Longer layovers (90+ minutes) when connections are unavoidable give me adequate transition time. Especially if I’m connecting in an unfamiliar airport, I try to ensure I have ample time to find my next departure gate.
• Morning flights, when I have more energy, and airports may be less crowded
• Selecting airports known for better accessibility features (many airport websites now detail their accessibility options)

Seat Selection Matters

The extra cost for seat selection is worth every penny:

• Aisle seats provide easier bathroom access and eliminate the need to climb over fellow passengers
• Seats that offer additional legroom
• Right-side aisle seats work best for me since my left side was affected. This also increases my likelihood of spotting the flight attendant at mealtimes. Last summer I was on a flight from Brussels back to the US, and since I was seated on the far side of the plane, the flight attendant passed by me on the left side. When it was dinnertime, I didn’t notice the flight attendant standing in front of me with the food options until he raised his voice, obviously confused why I was ignoring him, to ask, “Ma’am? “Hello, ma’am, would you like curry chicken or vegetarian pasta?”

Packing Considerations

If you travel with a battery-powered mobility aid like me, such as the Cionic Neural Sleeve, I’ve found it requires some specific packing strategies:

• I always pack the charger in my carry-on, never in checked luggage, in case I need it easily accessible
• If I need to check a bag with the Neural Sleeve in it, I always keep the control unit in my carry-on luggage due to airline lithium battery restrictions
• A backup battery pack ensures I never run out of power
• I pack extra gel pads in case mine get dried out on my trip
• The Sleeve's control unit fits easily in a backpack, purse, or bag
• I sometimes bring cleaning wipes for the electrodes if traveling for multiple days
• My traditional AFO (ankle-foot orthosis) or other FES brace comes as a backup, just in case

Airport Navigation: The Day of Travel

Getting to the Gate

Airports require significant walking, often at a brisk pace. I use these strategies:

• I book my transportation to arrive at least 30 minutes earlier than recommended for my flight
• I use the airline’s app to familiarize myself with terminal layouts beforehand
• If needed, I call ahead to request a wheelchair for particularly large airports or tight connections, using the Neural Sleeve or brace for shorter distances where I can manage independently. Sometimes I will also wait to inquire at the gate.
• I take advantage of pre-boarding options to avoid the rush and stress of general boarding

Security Screening Success

TSA interactions require preparation:

• I've enrolled in TSA PreCheck, which has been transformative for my airport experience
• With PreCheck, I don't need to remove my shoes or take off the Neural Sleeve, eliminating one of the most stressful and physically challenging aspects of air travel.
• The expedited screening process means significantly less standing time, so I’m less fatigued before my flight.
• Even with PreCheck, I still inform agents about the Neural Sleeve before screening begins, saying that it helps me to walk and I can’t remove it for security. This has never been a problem for me; the TSA agents are generally understanding and sometimes just want to take a quick look and conduct a screening or patdown.
• The Sleeve typically doesn't trigger metal detectors, but I'm prepared for the additional screening just in case, which is why I allow extra time to arrive at the airport.
• For international travel where PreCheck isn't available, I request a pat-down and advise the security agents I cannot remove the device but they are welcome to investigate.

Comfort During the Flight

Once on board, managing comfort with foot drop and my brace sometimes requires some adaptation:

• I adjust the stimulation settings to "Pause" through the app, or I will turn it off which prevents unnecessary muscle activation while seated.
• I perform seated ankle and arm stretching exercises to prevent stiffness.
• Compression socks help prevent swelling at altitude.
• I remove the controller from my pocket during long flights for comfort. If needed, I will charge the control unit from the plane so I am prepared with a full charge for landing.
• I periodically check the electrode contact to ensure effectiveness upon arrival.

Arriving at Your Destination

The Final Stretch

After landing, fatigue often sets in, making the Neural Sleeve particularly valuable:

• I recalibrate the sleeve settings to "Walking Mode" before disembarking.
• When deplaning, I wait for crowds to thin before attempting to retrieve luggage from overhead bins. Or I will ask whatever kind person is sitting next to me for help retrieving my bag.
• I move to the side after exiting the plane to adjust my belongings and prepare for the terminal journey. If wheelchair assistance was previously requested, wait for the appropriate airport staff member to assist.
• In the hallways, I use moving walkways when available, as they help conserve energy.
• If connecting to ground transportation, I allow extra time rather than rushing. I move slowly with intention for safety.

Managing New Environments

Each destination presents new terrain challenges:

• When in the airport with my Neural Sleeve, I will use the Sleeve's adaptable settings for different surfaces (carpet, tile, concrete). I typically use Gait Context but sometimes will switch to Step-To mode for uneven surfaces. If in my Bioness, I might turn up the stimulation one level for added support.
• I temporarily increase stimulation for inclines like jetways or other uneven surfaces.
• I identify rest points throughout the terminal for brief recovery stops.
• I'm not shy about using airport assistance services when needed.

Essential Resources for Travelers with Disabilities

Affordable Airport Transportation

In New York City, where I live, Access-A-Ride has been a game-changer. This paratransit service allows eligible individuals with disabilities to book accessible transportation anywhere in the city for just $2.90 – the same price as a subway ride. I schedule my pickup 1-2 days in advance, and the service provides door-to-curb transportation in accessible vehicles. Similar paratransit services exist in many major cities, often at reduced rates compared to taxis or rideshares.

The Hidden Disabilities Sunflower Program

One of my most valuable travel discoveries has been the Sunflower Lanyard program. This simple green lanyard with sunflower pattern, worn around the neck, discreetly indicates to airport staff that you have a hidden disability and might need additional assistance or consideration. I've found that wearing this lanyard while navigating security, boarding, and other airport procedures results in staff offering help before I need to ask. Last October, I was traveling from Chicago back to NYC, and my Neural Sleeve died by the time I got to the airport.  As I’m hobbling up to the ticket counter to check my bag, the man behind the counter sees my Sunflower and immediately asks if he can call for wheelchair assistance to take me through security. It was a blessing, and the assistance saved me from fatiguing more and having to navigate the airport without a brace. Many international airports now recognize this symbol, including most major US airports. You can request one for free at the information desks or order online before your trip.

Actual footage from when my Neural Sleeve died at the Chicago O’Hare Airport. Thank goodness I had my Disability Sunflower and was able to get assistance to my gate.

TSA PreCheck: A Must-Have for Mobility Devices

If there's one investment that has made the biggest difference in my air travel experience, it's TSA PreCheck. The $85 fee (good for five years) has paid for itself many times over in reduced stress and physical strain. For those of us using mobility devices like the Neural Sleeve, the ability to keep shoes and devices on during screening is invaluable.

What many don't realize is that removing and replacing an AFO or Neural Sleeve isn't just inconvenient—it's physically taxing, time-consuming, and sometimes requires sitting down in an area where seating may not be readily available. With PreCheck, I bypass this entire ordeal. The shorter lines also mean less standing time, which preserves energy for the rest of my journey.

Additional Helpful Resources

• TSA Cares: A helpline (1-855-787-2227) that assists travelers with disabilities. Contact them 72 hours before travel for personalized support.
• Airline Accessibility Teams: Most major airlines have dedicated teams to assist passengers with disabilities. Contact them directly when booking to arrange specific accommodations.
• Airport Accessibility Maps: Apps like AccessAble and Wheelmap provide detailed accessibility information for many airports.
• Portable Chargers: Essential for keeping the Neural Sleeve powered during long travel days (I recommend carrying at least 10,000mAh capacity).
• Travel Insurance: Look specifically for policies that cover pre-existing conditions and assistive technology.

Summer 2024 in the Netherlands