Summer, to me, always means summer vacation. When I was growing up, we would always spend a week at the beach – first it was Ocean City, New Jersey, then when I was a little older it was Hilton Head, and occasionally Myrtle Beach. As my sister and I have gotten older, we’ve lobbied for other types of vacations, too – DC, New York – ones that are not as relaxing but area more exciting.

This year, we actually don’t have a summer vacation planned, because we have a lot of long weekend trips happening. Many of them are driving, but we did fly to Dallas earlier this year. And while I’ve written before about what it’s like to travel with a disability (you can read that here), I’ve never discussed flying, which is its own beast.

To start with – I almost titled this post “Flying In a Wheelchair,” but thought that would be misleading because the whole point is that I DON’T fly in my wheelchair! When I was younger, this wasn’t as big of a deal, but as I’ve gotten older and need more support, this has become increasingly difficult.

So – if I don’t fly in my wheelchair, what does happen? I’m going to start from the beginning of the airport process, right when we arrive. In my travel post, I talked about the number of THINGS we have to travel with. These all have to get packed into the car, and then unpacked again at the airport – we always do curbside check-in because it would take a while to lug everything through the check-in line inside. The good news is that you’re not charged for checking medical equipment, but you still have to be okay with checking it and crossing your fingers that it’s not damaged in the cargo hold. You can also carry on as many medical items as you want, but that’s more that you have to wrangle when you’re stressed and boarding. So we generally try to find a balance – carry on things that seem like they might get damaged in cargo, but check everything that we reasonably can.

Once we’ve checked our bags, we head to security. We do get to go to a separate accessible line that is generally much, much shorter than the general security line – but this #WheelchairPerk goes away very quickly, because we also have to wait for a female TSA agent to pat us and our wheelchairs down, and this can take a while. They pat us down, and then swipe tester strips over every possible surface of our wheelchairs to check for explosives. Because the sensor can also be set off by things like pesticide, we often have to get swiped more than once (I seem to have particularly bad luck).

After that, we head towards the gate. Usually, my sister and I both get something to eat and make sure we use the bathroom as late as humanely possible, because the bathrooms on planes aren’t accessible! But we can’t wait too long, because we have to preboard to gate check our wheelchairs, which means we have to report to the gate 30 minutes before the scheduled boarding time.

I know that preboarding sounds like a perk, but when it means you have to be there 30 extra minutes early, it’s more like another required hoop we have to jump through. At the gate, we gate check our wheelchairs, which means we get to drive them down the jetway, as close to actually taking them on the plane as possible. But at the end of the jetway, we have to get out of our chairs and get carried on to the plane. They do have an aisle chair available for using inside the plane – it’s skinny enough to fit between the aisles on the plane – but it has almost no support, and I can’t hold myself up sitting in it. Once I’m out of my chair, staff at the airport takes it back down the jetway, down an elevator, and loads it into the cargo area of the plane. My dad always does his best to explain to the staff how to move the chair, and we’ve gotten incredibly lucky so far, but we never know if we’ll get our chair back in one working piece.

Sitting on the plane comfortably is yet another challenge, and one that currently requires the use of many, many pillows. Airplane seats are too big for me – my feet don’t touch the floor – so there’s lots of propping involved in getting me comfortable. And no matter how good I feel a few minutes after takeoff, by hour three or so, everything starts to get sore. I also can’t really eat or drink easily on a plane (it’s the same issue of lack of support), so I’m always very ready for the flight to end.

Then when we land, the whole process of bringing the wheelchairs around and back to us has to repeat itself. On a good day, this can take 30 minutes; if the elevator is farther away from our gate, it can take even longer. As soon as we have our wheelchairs and confirm that they work, my dad takes off ahead of us for baggage claim, because by that point, everyone else on our flight has already picked up their luggage. This is also usually when I beeline for the airport Starbucks, because I am worn out.

All this being said – I actually like to fly! Long drives aren’t really any easier for me, so flying is my only option for going anywhere more than 5-6 hours driving from Pittsburgh. But I do wish the process were simpler. I didn’t even mention yet that there are so many smaller airplanes now, and those don’t even have the space in cargo to fit my wheelchair, so I just can’t fly on them. What I’d love, more than anything, is to be able to take my wheelchair on the airplane. If you want to learn more, check out All Wheels Up – it’s an organization founded by another SMA family, and dedicated to working towards increased airline accessibility.