10 Tips for Traveling When You Use a Wheelchair

I want to start out by saying:

Just because you are disabled, it doesn’t mean your life stops.

It may seem like it at first, especially when you transition from able-bodied person to disabled person. Everything changes so swiftly and can seem weird and surreal, like breathing underwater or gravity suddenly being turned off. You look around you and everything is the same, but your body isn’t. I still occasionally feel shocked when I wake up early in the morning and see my wheelchair sitting by the side of the bed, even though it’s been a year and almost 9 months since I first became disabled, and almost a year and a half since I began using a wheelchair every day. Some days it still seems weird, and some days my life still feels like it’s over.

Maybe you have been disabled your whole life, so while you are used to being “different,” life is still complex and hard in ways it isn’t for your peers. When just dressing yourself can be a lengthy task, traveling can seem like an impossible reality. But I’m here today to tell you that you can still be an awesome traveler in your wheelchair. Here are my 10 tips for traveling as a wheelchair user!

1. Call ahead and leave extra time. Unfortunately doing some “leg work” (ha ha) is necessary when you are traveling with mobility devices / chronically ill / disabled. Things will go far more smoothly and you will be able to access extra help if you let the airline, train company etc. know ahead of time that you are disabled. I have had much better trips when I do this, and the bonus is that you will get special perks like getting to board the plane first. Chances are you are already used to advocating for yourself and asking for help since being disabled tends to teach you that really quickly!

If you are a seasoned traveler, you probably know that getting to the airport/train station early is never a bad idea. If you are disabled / chronically ill, leaving extra time is imperative, especially if you don’t travel very often or if this will be your first time using a new form of transportation. Being in a wheelchair means I don’t move as quickly as others, and it also means I need extra help. So allow yourself at least 45-60 minutes of extra time. The worst thing that can happen is you’ll be super early and have to waste time on your phone.

2. Measure your wheelchair. It can be helpful for the airline to know the dimensions of your wheelchair, so measure it beforehand! I was asked for mine when I called the airline to book our tickets and ask for special arrangements. When you are flying, your regular wheelchair is often stored with the baggage, and instead you are given a aisle-friendly wheelchair to get on and off the plane. They will also use it if you need help getting to the bathroom on the place.

3. Tell them what hurts. Whenever someone is going to be near my body, touching me or excessively touching my wheelchair, I usually let them know ahead of time to “Pretty please with a cherry on top, do not touch my legs and feet.” I learned the hard way this winter when I didn’t tell a technician about my chronic pain issues during a pelvic ultrasound and she grabbed my CRPS leg to help me get in the stirrups. I almost flung myself off the table, wild-eyed and sick with immediate pain, all while squeaking out “Please stop! Stop! I have nerve damage in my legs!” The technician began to cry, and I felt awful that I had not done my due diligence to make sure she understood my body’s “no no zone.” It was one of the most awkward and unpleasant experiences of my life; she felt guilty and embarrassed, and I felt guilty and embarrassed. So tell whoever is helping you in and out of any seats / wheelchair if you have certain places on your body that are hyper-sensitive. You don’t need to go into detail about why, just let them know to avoid any awkward exchanges and extra pain!

4. Get ready for another kind of ride. As I mentioned above, you will most likely have two people carrying you on and off the plane while strapped into the airport wheelchair. Whenever people have to lift me in my chair, I feel awkward and kind of afraid they will drop me (or say I’m heavy, ha ha.) There’s also a good bit of jostling, and I found the experience cranked up my pain. All of the airport personnel were lovely, though, and didn’t make me feel like a hassle or a burden. I was lucky to have such kind people helping me get where I needed to go.

5. It’s OK to ask for help. As you probably know, airports can make you feel like you are stuck in a game of “Mario Cart.” It’s always an adventure to speed to your gate while dragging wheeled bags and dodging other passengers who are on their phones and lollygagging. Trying to catch shuttles and metro systems when there’s minutes to spare before your flight takes off is even more harrowing! It will be very helpful if you ask airport employees to help push your wheelchair, or get you to your destination in the cart — you know, the beeping one that races about. Here’s your chance to ride it! Telling whoever is manning your airport gate that you are disabled and use a mobility device will also result in you being boarded first. Sometimes there can be a silver lining to being disabled!

6. Dealing with the security section can be easy or awful. I had serious trepidation about going through airport security. It’s so intense and rushed in general, and I had no idea how it all worked when you are in a wheelchair. My first experience, thankfully, went fantastic, a bonus of flying from a smaller airport. We had an airport employee push me through the airport to the side of the security line, and then I was quickly transferred to a TSA agent after another TSA agent found out that I couldn’t stand in the scanner. I let the TSA agent know ahead of time to be careful of my legs as she pat me down; she did her best to be gentle. Your mobility device will also be swabbed for explosives.

The second experience flying home was drastically less pleasant. My wheelchair was flagged for explosives after I was pat down, which then meant I had to be patted down a second time and my carry-on bags were searched. It was very stressful, and being touched that much flared me up before the trip had even begun. I ended up tearing up in pain from the second pat down and felt overwhelmed. Hopefully this doesn’t happen, but if it does, hang in there and take deep breaths.

7. Be nice. Traveling is stressful for everyone, disabled or not. The rushing, the early mornings and late nights, the claustrophobic planes and trains, and the long lines create a perfect storm for crankiness and panic attacks. Add in the extra stress of being disabled / chronically ill and yeah… sometimes you may feel irritated with transportation personnel. Try to remember that this is their job and when things go wrong, it usually isn’t about you.

When I was pulled aside to be searched twice, I was not happy. I had been up since 3 A.M., I was dizzy and nauseous, and my pain was already cranking up. The idea of having not one but two strangers running their gloved hands along my painful legs and feet sounded absolutely awful. I took a few deep breaths and reminded myself that they were just doing their jobs, and refusing to cooperate or being nasty to them would mean a lot more stress.You may run into a bad egg on your travels, but chances are, overall you will be dealing with ordinary people who are just doing their best to get passengers where they need to go. So be nice and say thank you!

If you are in a situation with an airport employee who isn’t being kind, or you aren’t being provided the extra help airlines are supposed to offer, ask to speak to a supervisor and stay calm. If you are in a bad situation with another passenger, let someone know and stay calm. I have found that the more upset you  get, the more stress it puts on your nervous system.

8. If you use it a lot, carry it on. If there are items that make your day to day existence more tolerable, chances are you will need them during traveling. You do not want to get in a situation where you cannot easily access them, especially on the plane. So be sure to pack all your medications in your carry-on, along with anything else that helps your worst symptoms. I always have gum for ear popping, a bag since I am always nauseous, ginger chews for said nausea, and some stomach-friendly snacks since I don’t know what they will serve on the plane. Some planes now are fancy and have outlets in each seat, so you can bring a heating pad! Thankfully, someone told me about it ahead of my trip, so I brought one and got to use it during our 4-hour trip  back home. It was heavenly to have on hand, since sitting for long periods of time makes my lower back hurt. It may also help relax you if traveling increases your anxiety. P.S. Don’t forget your phone charger!

9. Sadly, not everything will be disability-friendly. As you may know, this world of ours isn’t always mobility-device-friendly. This is unfortunately true when traveling. I had some frustrating experiences with Amtrak last year, and I wish I had known ahead of time that my wheelchair would barely fit down the aisles of the train cars and completely not fit the hallway to the meal car. The swaying of the train cars also make wheeling yourself more difficult, and the bathrooms can be a tight fit for wheelchairs. If you are taking a train, it may be helpful to ask ahead of time how to navigate the train, and ask for help from the attendants if you cannot easily access the meal car or bathroom.

I found the airport and planes to be much more disability-friendly, but I’m sure people have run into issues with these places as well. I did have  the ironic experience of going to the bathroom in the airport before we went through security… and found a woman decided to use the only stall designated for disabled people. It was so frustrating to watch her walk in and stay in there for quite a while when I desperately needed to pee quickly and then get through security. Sigh.

10. Be prepared to flare. If you are chronically ill you may flare up during or after your trip due to the extra physical exertion and stress. This has been true for me since I became sick with Lyme disease 4 and a half years ago. Any trip I take, whether I fly, drive, or take a train is pretty much guaranteed to flare up my pain and nausea. It just it what it is. I don’t travel a lot because I a) don’t feel well enough to and b) don’t want to experience a flare. But sometimes the flare-up is so worth it. I go into any trip with the understanding that for a few days after the trip, I will most likely feel crappy. I try to make sure those who I am traveling with understand, so everyone is on the same page. I usually push my traveling companions to go do whatever they would like during the day while I lay and rest. Hopefully after some rest, your body will calm down and you can go experience the new place you are visiting.

It can be pretty amazing to go somewhere new that isn’t your bedroom or couch. I know that despite the pain and the stress that comes with traveling, it is so good for me to reminded of how big, beautiful, and lovely this world is. Sometimes a change of scenery can “recharge you,” and sometimes being in a new place for a few days can put a smile back on your face.