Each week in July, for Disability Pride Month, I’m sharing about different parts of my life as a disabled woman. Last week’s post was about common misconceptions.

Traveling with a disability, for me, is pretty complicated. This is not going to be an exhaustive post – there is just so much that goes into traveling that there’s no way I can fit it all into one post. But I’m going to cover some of the basics, and add in details where I can. My hope is that for other disabled people, you either learn some tips and tricks or feel seen, and for non-disabled people, that you realize how inaccessible so much of travel can be, and give disabled travelers a little grace.

To make this a little bit easier to follow, I’m going to start with some general travel basics, and then break it down into air travel and car travel.

Traveling While Disabled: The Basics

Plan Ahead

The first, and most important thing that I have to do when I travel, is plan waaaaay ahead. As much fun as it sounds, spontaneous travel is not something that is possible for me right now! There are a few reasons why, but the biggest one is that hotels are still really limited in the number of accessible rooms they offer. Because I travel with my sister, who also uses a wheelchair, and my parents, our options are even more limited. I’ve found that the vast majority of accessible rooms and suites at hotels come with one king sized bed – that doesn’t really work for our family! So often, there might only be one room type that works for us at the hotel. If it’s already booked, we’re out of luck.

And what we’ve really found is that having two bathrooms makes the trip SO much less stressful for us – everything just takes more time when you need to get transferred in and out of your chair, so having two bathrooms just makes things so much easier logistically. But it’s also almost impossible to find without getting into the super upscale, luxury hotel budgets. So when I find it, I book immediately because it’s so rare.

Think of Accessibility Broadly

Even if I find a suite that should technically work for us, there’s more that I have to think about to decide if the space will really be a good fit. I have to look at the space, as in actual square footage – with two of us using wheelchairs, are we going to feel cramped, like we’re constantly bumping into each other or into the furniture when we’re moving around the room? Is there a microwave and minifridge? We need to keep our medication cold, and because we eat and drink more slowly, things often need to be reheated. If there’s a balcony, is there a step/lip that keeps my wheelchair from being able to get outside? Is there space in the bathroom for my wheelchair to fit?

And then there’s the general area, too – are there things nearby that are walkable easily, or are we going to have to get loaded and unloaded into a car every time we want to go somewhere? Is there food nearby? There’s so much thought that goes into the space, and much of what I have to think about isn’t usually considered in strict ADA accessibility.

Consider Transportation Options

Transportation is often a STRUGGLE. In NYC, for example, less than half of subway stops are wheelchair accessible. We found that basically, the subway wasn’t even worth it – we’d go so far out of our way because of where the accessible stops were that it wasn’t really saving time. DC’s metro is much more accessible… unless an elevator is broken, which happens a lot.

Now that wheelchair accessible Ubers and taxis are available in some major cities, things are a little bit easier – when I went to NYC in November, it was the first time I really left the midtown bubble because we were able to take Ubers. But even then – because my sister and I both use wheelchairs, we had to get two Ubers each time, since each Uber only fits one chair. It’s not cheap! And lots of cities still don’t have wheelchair accessible Ubers – Pittsburgh doesn’t!

For lots of trips, we try to not use our car once we’re there – it’s just easier. But that’s not always an option. So we need to think about parking – both at the hotel, and everywhere else we decide to go. Regular parking can be hard enough – accessible parking, so that our wheelchairs have room to load and unload – is even harder to find.

Basically, it means we have to make sure to add in extra time for transportation – either to wait for an Uber, or to find parking.

Packing Light Isn’t Always Possible

If you’ve ever traveled with young kids, it’s honestly a very similar phenomenon. It doesn’t matter if we’re taking a trip for two days or two weeks – there is just so much STUFF that we have to bring. This includes (but is definitely not limited to!): medication (that needs to be kept cold), regular pill medication, feeding tube pump, feeding tube extension sets, feeding tube bags, feeding tube formula, gauze, tape, two kids of breathing machines, shower chairs, toilet chairs. And then there’s the less medical but still disability related things: pillows for getting comfortable in bed, tray tables because not all hotels have reachable table space, extra blankets for the bed and while in my wheelchair, neck pillows and lap trays for the car… and so, so much more that I’m forgetting right now. It is a ton of stuff, and most of it can’t be packed in advance because it gets used. It makes it really hard to leave for our trips as early as we’d like, because everything has to be done at the last minute.

Bathrooms are Key

No one would believe the amount of time I spend thinking about and planning around bathrooms while traveling. Honestly – I try to schedule the days so that I don’t have to use the bathroom anywhere other than the hotel room. It’s just so much easier and less stressful – but, of course, it definitely impacts the day-to-day schedule of the trip. Occasionally, however, that’s not possible. Usually, I can count on Starbucks… but during my NYC trip last year, when I was (of course) trying to hurry, I had to try four different places before I found somewhere with an accessible, open bathroom. I think this is probably the biggest thing that people don’t realize, but has the biggest impact on my days.

Honestly, there’s a lot more that I’m not getting into here, but this post is already getting long! And as a reminder – this is what I personally deal with while traveling. Different disabled people have different concerns.

Traveling While Disabled: Air Travel

So – air travel, in my opinion, remains one of the least accessible things. I love that flying lets me get places quickly, but I hate just about every step of it.

First – I already mentioned that it’s really difficult to travel light. It’s one thing when you’re driving somewhere, but when you’re flying, all of that luggage has to be checked or carried on, and then has to be loaded again when you arrive. You can see from the picture above how much stuff we have to travel with – it’s a lot! It’s stressful… not to mention that things can break and get lost! The airport itself – even before we get to the actual boarding of the plane – is full of stress. When we go through security, we have to wait for a free TSA agent who can swab us and our wheelchairs to check for explosives, which can take a while, especially when the airport is crowded.

Once we make it through security, we have to be at the gate 30 minutes before boarding time so that we can get the tags to gate check our wheelchair and let them know we need to pre-board. This sounds simple enough, EXCEPT – we also need to carefully plan our bathroom stops, because the bathrooms on airplanes aren’t required to be accessible! So it’s a delicate game of using the bathroom as late as possible, but not so late that we don’t get to the gate in time.

And then there’s the fact that we can’t take our wheelchairs on the plane with us – they go underneath the plane, in the cargo area. It’s really uncomfortable to have to sit in a airplane seat, and actually physically tiring, too – the seats just don’t have the support that I need to be comfortable. It’s also terrifying to watch them load and unload the wheelchairs from cargo – we’ve been incredibly lucky, but there are so, so many horror stories of chairs being damaged in the process. It’s not like we can just get a loaner chair, either – my chair is fit to me so specifically that if it breaks, I’m literally stuck. A simple repair might be possible if I’m home, but is much harder in another city – and actually fully replacing a chair takes months. We try to take off all the pieces that we can – headrest, seat cushion – and flip up the footrests, fold in the controller… but we still have to cross our fingers and pray!

Because of all the extra time involved with flying, we basically only take direct flights. We also only fly Southwest, because all of their planes can fit our chairs in the cargo space – we had a nightmare once after a red eye back from LA, where, even though we did all the necessary due diligence ahead of time, we got to the gate to be told that our chairs wouldn’t fit in the cargo of the smaller plane. After that, we decided it was easier just to stick to flying Southwest, because all of their planes can fit wheelchairs. It’s one less thing for us to worry about, at least.

Traveling While Disabled: Road Travel

Okay, so driving instead of flying is a little bit easier, I think, but still not without it’s challenges too! The major pluses of driving are that we can stay in our wheelchairs during the drive, which is much more comfortable, and that we can follow our own schedule and not have to stress about making a flight in time. However – there are a few things that make it tricky.

Because of the whole packing light thing I’ve talked about a few times, fitting everything in the car can be a lot like a game of Tetris – everything has to fit juuuust so. This picture above is actually from a trip that was close enough that we took two cars – normally, we take a more compact toilet/shower chair and just squish the bins in the back. We also have to make sure that the things we need during the drive are within easy reach for my mom to turn around and grab. Sometimes our heads can “fall over” when the car goes around a curve, so my mom has to have a path to be able to easily reach us to help readjust. Sitting in the car in one position for too long can get uncomfortable, too – so we sometimes need to continually readjust with neck pillows, tilting our wheelchair, un-tilting our wheelchair, and we need help with all of that.

The other consideration when planning out a drive is, once again, the bathroom! My sister and I have “trained” ourselves not to stop to use the bathroom while driving, out of pure necessity. We found that the accessibility of rest stop bathrooms, plus the time it took to load and unload us in our wheelchairs in a very, very carefully packed car just wasn’t worth it. It took up way too much time. But because of this, it means that there’s a pretty hard stop on how long we can drive without stopping! So while the trip itself is less stressful (and we don’t have to rent a van when we arrive, because we have our own car), it’s a little more limited in where we can go.

I knew this post would be long, but it ended up being even longer than I expected! If you have any questions about how I travel, or want to share your own “traveling while disabled” experiences, make sure to leave them in the comments.