This may seem like a no brainer but I want to start this post out by saying that:
just because you are disabled doesn’t mean your life stops.
It may seem this way at first, especially when you first transition from normal able bodied person to disabled person. Everything changes so swiftly and everything seems so weird and surreal, like breathing under water 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 just sitting by the side of the bed and it’s been a year and almost 9 months since I first became disabled and almost 1.5 since I began using a wheelchair every day all day.
Some days it just still seems REALLY weird and some days my life still feels like it’s over (slightly overdramatic but its the truth)
Or 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 (I apologize that this perspective isn’t always covered in my blogs since that hasn’t been a part of my story**I would love a guest blogger who has been disabled since birth to share more about that**). When just dressing yourself can be a lengthy task, traveling can seem like an impossible reality….
your friend Genevieve is here today to tell you that you can still be a badass traveler EVEN in your wheelchair.
I haven’t done A TON of travel since becoming disabled because I rarely feel well enough to leave my house BUT I’ve had some experience and wanted to share what I have learned. I have definitely had GREAT experiences and AWFUL ones. I haven’t found many blog posts about traveling when you are disabled so if nothing else I want to provide a resource for the disability community because its a community I am proud to be apart of.
1. Call ahead and leave extra time: Unfortunately doing some “leg work” (HAR HAR HAR) 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 available 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 to access the 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 teaches you that really quickly!
If you are a seasoned traveler then you probably know that getting to the airport/train station early is never a bad idea. If you are disabled/chronically sick, leaving extra time is imperative especially if you don’t travel very often or if this will be your first time traveling in a new way (ie. taking the train for the first time). 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 EXTRA time, let’s face it the worst thing that can happen is that you are SUPER early and have to waste time on your phone.
2. Measure your wheelchair: This seems like a weird tip but 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. The reason for this is that 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 anyone is going to be really near my body and/or going to be 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 say this because 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 immediately reacted like an animal in pain and almost flung myself off the table wild eyed and sick with immediate pain, all while squeaking out “Please stop! 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 because she felt guilty and embarrassed and I felt guilty and embarrassed (man being a human is tough some days) .
So believe me and tell whoever is helping you in and out of any seats/wheelchair that you have certain places on your body that are hyper-sensitive and preferable avoided. 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 STRAPPED into the airport wheelchair on and off the plane. For whatever reason whenever people ever have to lift me in my chair I just feel really awkward and kind of afraid they will drop me (or say I’m heavy haha). There’s also a good bit of jostling and I definitely found the experience cranked up my pain. So be prepared ahead of time for this experience.
**ALL of the Airport personnel was lovely though and didn’t make me feel like a hassle or a burden, I was super lucky for such kind people to help 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 Mariocart game. It’s always an adventure to speed walk to your gate while dragging wheeled bags while dodging other passengers who are on their phones and lollygagging. Trying to catch shuttles and metro systems while 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 you OR get you to your destination in the cart. You know the cart, 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! See, sometimes there CAN be a silver lining to being disabled!
6. Dealing with the security section can be super easy or super awful: Going through security in my wheelchair was one part of flying that I had some serious trepidation about. 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 to flying from a smaller airport. We had an airport employee push me through the airport to the side of 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 2nd pat down and just felt overwhelmed. Hopefully this doesn’t happen but if it does, hang in there and take deeeeeeeep breaths.
7. Be nice: Traveling is stressful for everyone, handicapped or not. The rushing, the early mornings and late nights, the claustrophobic planes and trains, and the long long long lines. It’s a perfect storm for crankiness, temper tantrums, and panic attacks. Add in the extra stress of being disabled/chronically ill and yeah…sometimes you may feel irritated with airport/train etc personnel.
That being said, 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 am, I was really 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 do it 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 personnel who isn’t being kind or you aren’t being provided the extra help airlines are supposed to offer their handicapped travelers, ask to speak to a supervisor and stay calm. If you are in a bad situation with another passenger, let an airport personnel or stewardess 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 meds on your carry on along with anything else that helps your worst symptoms. I always have gum for ear popping, a puke bag since I am always nauseous, ginger chews for said nausea, and some stomach-friendly snacks since I didn’t know what they would serve on the plane. Some planes now are fancy and have outlets in each seat so you can bring a heating pad!! Someone (thankfully) 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 also 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 it best to use the ONLY stall designated for handicapped people. It was SO frustrating to watch her walk in there and stay in there for quite awhile when I DESPERATELY needed to pee quickly and then get through security. Sigh.
10. Be prepared to flare: Unfortunately because traveling is SO stressful on ALL of us, it usually means that if you are chronically ill you may flare up due to the extra physical exertion and stress. This has been true for me since I became sick with Lyme Disease 4.5 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 a few days of 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.
What are your tips for traveling when you are disabled?
Happy travels friends!