I’m living proof, so there’s that. But seriously, I can understand any apprehensions you might have about doing this. I’ve had them too. But slowly they have gone away as I’ve taken more and more trips. Sure I have ongoing concerns, but I’ve figured out ways to handle them. Here are some things I’ve learned.
Helpful people are everywhere
Unless you’re planning a solo journey to the middle of the Australian outback, you’re going to have people around you. If you fell out of your chair in the middle of Times Square, people would help you back up. Ok I can’t say that for sure but I have fallen out of my chair in downtown Milwaukee and four strangers came to my rescue.
In addition to strangers, there are people in the travel and hospitality industry whose jobs are to help travelers. I’m not just talking about the assistants who can help you board an aircraft, but I’ve had to ask for help from hotel maintenance staff on more than one occasion. When my chair stopped working in the middle of the night, my aunt and I called the front desk and they sent up some guys with tools to help us. They eventually pushed me back to my van and I fixed it later (with help of another stranger) but they were happy to help.
Make your independence portable
I’ve written on here about how I need help getting out of bed in the morning. That’s not just when traveling, it’s when I’m at home too. If you read the other article, I have pretty much the same setup at home but a more permanent version. That’s the version that came first. Once I had that done, I figured out a way to make a portable version of the actuator arm so I could use it on trips.
If you have things at home you need in order to be independent, find portable versions of them. There are all sorts of things out there from portable commode chairs to reachers to chargers, or whatever else you might need. I try to get everything into one suitcase so it’s easier for me to get around, but if you had to bring two, you could make it work. When in doubt, re-read the “helpful people” section above.
Take baby steps
I traveled a lot for wheelchair tennis, but once i started having more difficulty with my mobility I got nervous about traveling again. So I had to re-train myself, no pun intended. I decided to take the train from Milwaukee to Chicago (something I’d never done before) and spend a day down there.
I was nervous about everything from paying for parking at the train station to boarding the train, to getting off the train, and then about wandering downtown Chicago. Thankfully, it was easier than I imagined and kick-started my travel bug again.
So if you want to take an adventure to Europe but you’ve never even taken a short train or bus trip in your own region, you might want to start there and work your way up. A simple trip like that has a LOT of the same components with much less of the stress. You’ll have to plan transit, get a hotel, and pack for your mobility. But if you need something you can always call someone you know to come and help you.
Others have done it
Knowing that you’re not going to be the first person in an electric wheelchair to take a journey is actually a comforting feeling. There are very few places in the world where others haven’t been. They’ve figured out how to do it and you can too.
If you have questions or need ideas, don’t hesitate to contact me!
The sky was deepening its orange hues while I got my bags and rolled towards the door of the Adelaide airport in Australia. I hadn’t called or made accessible taxi reservations and was fully prepared to sit around and wait for one to show up, as is often the case. Very few transportation services for people who use wheelchairs are “on demand” like they are for regular transit services.
Imagine my surprise when I rolled to the taxi area and there sat an accessible taxi just waiting for its next passenger! It was perfect timing and it allowed me to head to my hotel just in time to see the sunset over the ocean. Unfortunately, the rarity with which this occurs is disappointing to the extent that I was more excited about the taxi than the beautiful sunset I would see.
I recently went to Singapore and found their metro system so easy that I would actually get excited about riding it every day. I could roll to the station, follow the pathway, take an elevator, and roll right onto any train I wanted with no problem whatsoever. The trains were level and close to the platform so there was no gap at all. I didn’t have to pre-arrange help and I didn’t have to ask anyone at the station to help me. I could also change my mind and get off at any station I wanted to without worrying about needing a ramp or help of any kind. It was truly awesome to feel “normal” and not waste my time while on vacation.
One of the reasons I get upset with non-disabled people who fear traveling, is the fact that if you can walk you can go out to the curb at any airport in the world and a taxi will be there waiting or will be just a few minutes away. The driver will know exactly where to go and you’ll be to your hotel before you know it. The same goes for Ubers and trains and buses and even boats. There is no planning required.
But if you need a ramp to get into a special vehicle or onto a train, then you’re often required to make advance arrangements. Scratch that — you’re USUALLY ALWAYS required to make advance arrangements. And this isn’t just about having to make a call to schedule something. For me, it means spending time searching for accessible options. Confirming that said options are indeed accessible for an electric wheelchair. Reconfirming. Buying a ticket if necessary and sometimes even having to make an appointment for assistance. And imagine if this highly researched plan A doesn’t work out!?
It’s just a simple train ride. Or is it?
One time I wanted to take a train from Amsterdam to Antwerp. In order to do this, I had to first figure out if this was possible at all. Then I had to figure out which train line I would take and when. Then I had to call and buy a special ticket for wheelchair space because I couldn’t buy it online like a regular ticket. Then I had to call another office and make an appointment for ramp assistance at the boarding station and because it was an international journey I had to make an appointment at the arrival station as well. Then I had to do the same in reverse for my return trip.
All of this took me almost two hours including all the research and time spent waiting on hold. The train ride itself would only take an hour and fifteen minutes!
So after my long flight I arrived at the train counter. They were ready for me and nicely, the agent told me I wasn’t charged the appropriate cheaper fee for the wheelchair space (even though I requested a wheelchair space and got one). I would just have to call (oh great, another call) after my trip to get an adjustment. I’m all on board with fare discounts for wheelchair users especially when the process is so over-tedious, so that was nice to hear. The price difference was significant.
But since I wasn’t charged the “wheelchair fare” their system didn’t flag it so the train staff knew to keep the wheelchair space clear instead of filling it with suitcases. So when I appeared on the train, I had to sit sideways between two rows of seats and pass on the refreshments because there was nowhere to put them. In other words, I could be assigned the wheelchair space and that wouldn’t flag anything unless I also paid the wheelchair fare. Who the hell came up with that process?
The view of my accessible space on the Thalys train from Amsterdam to Antwerp
After I got home I called to get the fare adjustment (and later emailed because the wait times were over an hour). I was told by Thalys that because I didn’t request a “wheelchair fare” in addition to a wheelchair space, I wasn’t going to be refunded and that’s why they weren’t expecting me on the train. Sorry for the inconvenience. Their system was clearly not geared towards accommodating a wheelchair user who didn’t already know their company policy and specifically request a wheelchair fare. Excuse me? I’m supposed to know the ins and outs of your business processes BETTER than your own ticket agents? Sorry, I don’t think so! So I ended up disputing the charge with my credit card company and got a refund for the difference in fares that way.
All of this for a train journey that any able-bodied passenger could have taken by simply walking off their plane to a train ticket counter, buying a ticket and going on the train. Done.
So if you’re wondering why fare concessions are a common thing for people in wheelchairs, the above tedious process is one of the main reasons why. But you know what? I would happily pay full price not to have to jump through all these fucking hoops every time i just want to take a normal train ride!
People take Uber for granted
It’s so common to see people waiting for Ubers and Lyfts nowadays or on Tv talking about their Ubers or their drivers. Anyone can just download the Uber app and request a ride, just like that! But for me, it’s not that easy.
Sure I can pull out the app when I’m somewhere and start requesting a ride. But if an Uber WAV (Wheelchair Accessible Vehicle) isn’t available, then I’m screwed. I’m even more screwed if I’m in a city where Uber WAVs aren’t even available in the first place. And even if they are available there used to (or still might) be a need to activate WAV access with a special promo code in the app. Ridiculous, right?
My success with Uber WAV has been extremely varied. When they first launched it in Chicago several years ago, I remember being in the heart of downtown Chicago, requesting an Uber WAV and the app kept telling me there were no vehicles nearby. Of course this is while I’m sitting there in front of a hotel watching person after person come out to the curb and hop into a regular taxi.
In the last year or so, I’ve had much more success with the WAVs in Chicago — so much so that I’ve actually been able to summon late-night Uber WAVs from Chicago O’Hare airport all the way back to my driveway in Wisconsin! It was expensive, but it was what I wanted, and thank the lil’ baby Jesus Uber was feasible for me.
But cut to me in Los Angeles, near the airport, and there are “No WAV vehicles available near your location.” At 9am. 5 blocks from the airport. LAX airport where there’s a never-ending queue of regular taxis, if not a giant parking lot full of them just waiting to pick people up.
Yeah. So luckily I had a plan B that day which involved taking the LAX FlyAway shuttle from the airport. This would mean rolling back to the airport terminal from my off-site hotel, then waiting for the bus. According to the website, no reservation was necessary even for wheelchair users.
Of course I get to the airport and bus #1 drives right past the stop area. Bus #2 stops and has a lift, but it’s broken. Same with bus #3, whose driver was just as frustrated as I was so he called and made sure the next one would have a working lift. It did, and I barely made it to my train on time even though I’d started my journey THREE HOURS earlier at my hotel. It took me 3 hours to do a trip that would have taken 30 minutes by car that Saturday morning.
The driver of that bus told me I should have called to make sure they knew I was coming that day. Listen, I was expecting to take an Uber and the shuttle bus’s own website said all the buses were accessible so no reservations were needed.
Stop complaining, and go — especially if you don’t need special services
Of course I will complain about these incidents of inaccessible or inconvenient transit. I complain to the companies and I complain to the airports. It sucks sometimes (almost all the time) but I don’t let it ruin my trip, or even worse — stop me from taking the trip at all. Even though the last time I flew to LAX to meet friends at Disneyland I waited FOUR HOURS for the Disney shuttle (same thing, broken lift), I still went back this time and still had to wait three hours.
If you are completely able-bodied and you are going to complain to me about having to wait fifteen minutes for a taxi at an airport, then I’m gonna roll over your foot. Even worse, if you’re going to worry about whether or not you’re going to get transportation from the airport AT ALL, then I’ll run over both of your feet. It’s so easy for able-bodied people to get transportation, it should be the least of your concerns.
I mean, you literally could call a taxi right now, wait for it, get to the airport, pick a random location with zero research, take the flight, arrive there, and get another taxi to take you to a random hotel all in less time than it would take me to plan the accessible services I’d need to do the same thing.
I mentioned a couple times that I can’t get out of bed without help anymore. Maybe if I lost weight it would be easier (I’ll let you know), but I can’t exactly liposuction my ass every morning just to make life easier. So I accepted the challenge when it arose and here are my current solutions.
Linear actuators are my friend
This pic will give you zero idea of how this works, but the next time I can film it, I will. Basically I attach one end of this linear actuator to the bed. It’s remote controlled so when I wake up in the morning I can extend it towards me, grab the handle, and then retract it. Most days it actually pulls me up onto my elbow so I can shift my weight to my chair. Sometimes it doesn’t pull far enough or the temporary anchor slips. I do the same thing at home but the permanent attachment to my bed is 99% reliable.
You can see a few things in this pic. The actuator is the long tubular thing on the right with the handle attached to it. The little buttons in the middle of the bed are my remote and back-up remote. My reacher is also there which helps with moving my blanket but also helps me reach the handle if it’s out of reach. Lastly, you’ll see the hotel phone there which, in addition to my cell phone, is used to call the front desk if I get stuck.
I have no idea what housekeeping thinks this setup is when they come to clean during the day, but it’s fun to keep them guessing.
The front desk is also my friend (when they answer the phone, screw you Staybridge Suites NYC!)
I took the above pic on my recent trip to Japan and you can’t see it but that bed was a little too low to the ground. I also had trouble anchoring the actuator to prevent it from sliding on me. I asked the front desk if they could raise the bed somehow, like with books or bricks or blocks or something but unfortunately they either didn’t know what I was asking or weren’t up for the challenge. In any case I decided to just call the front desk every morning.
The first time I did this was last year in Paris and it was no problem. Since then I’ve lost my anxiety about asking for help in this area. I prefer doing it myself, but I don’t get nervous about getting out of bed anymore, at all. I’ve only had one dumb experience in the last few years.
I did have one experience where the Staybridge Suites (an IHG hotel) in NYC didn’t answer the front desk phone and after I called a few times finally did answer it but then just put the phone on the counter instead of saying hello. I was comfortably in bed so I had nothing else to do but figure out how to get someone to my room and eventually called the main IHG customer service line. They got someone up there right quick (even though that particular phone agent had no clue what I was talking about initially and then even after explaining my situation wanted to tell me about “how I can earn free hotel stays by joining their loyalty program.” Yeah, no, and never again unless it’s free or super cheap.
Pretty much everyone who has ever come to help me has been super nice. It’s not a big deal to get me sitting up, it just takes some force. Usually they’re surprised at how easy it is.
So that’s how I mitigate that. I totally understand that some people need more assistance that this and that hotels won’t do things like wipe your ass. But if you really want to go somewhere, you can figure out a way, I know you can!
Nowadays I don’t mind these sorts of challenges. They’re like my version of a daily sudoku puzzle or crossword. Trying to figure out a way is actually fun for my brain, stops me from even starting to complain, and opens up a whole world of possibilities, literally!
I am usually the only person carried onto a plane because I use a wheelchair. This time I was flying from MSP to HNL and there was a second person who was brought on after me.
This little beach is right in front of the Sheraton Waikiki
He wasn’t talking. He was mostly grunting in response to things that were said and the jarring movements of the guys helping him board. A small commotion ensued when they realized his Delta One seat had a very high and wide console to lift him over. After a few minutes, another passenger got on board and was able to switch with the man so the configuration was a bit easier.
Meanwhile his wife and two caregivers were nearby, waiting for the assistants to lift him. The caregivers eventually came to help lift the man over a lower, more narrow armrest and they got him comfortably in his seat.
From what I overheard, his wife and he were flying to Maui where he would spend his final days. When we got off the plane, one of the very nice flight attendants was crying and complimenting the caregivers on how thoughtful and helpful they were to both the man and his wife.
Hawaii would be a wonderful place to spend your last days, right? How about you go there now though, when you’re not about to die?
You can wait for the perfect season, the perfect weather, the perfect discount, the perfect hotel, the perfect work schedule, school schedule, church schedule, and home schedule. Then you’ll wait and wait and wait and wait and not get to this beach in Waikiki.
Accepting that there is no perfect time to travel is the first and most important step to taking a trip. If it’s not one thing that gets in the way it’s another. A lot of those “things” are totally fictional — made up by your brain. They don’t even exist!
For example, I bought a sofa sleeper because I imagined I would have these overnight guests in my house when I moved in. I’ve had two in the last twelve years. TWO. I could have put those people up in a $300 a night hotel for the extra amount of money I spent on that couch!
I bought my furniture around the idea that I’d have friends and family visiting all the time. Stupidly, it didn’t occur to me that my family lives mostly in the city where I live and my friends live in way more glamorous places, so I go visit them. So I have this huge couch in my small living room and it’s all scratched up because I run into it with my wheelchair all the time.
Making decisions based on future scenarios that don’t even exist can be prudent sometimes, but when it comes to travel, forget it. There will ALWAYS be something you won’t be able to attend or do at home when you are out of town. Do you really want to skip a trip to Europe because your kid might have a soccer game that weekend — NEXT YEAR?
There will never be a perfect time at work, at school, at home, at church. Why? Because it’s impossible to predict the future and virtually impossible that the numerous schedules you have will all line up.
I remember when I was in fifth grade, I threw a violent fit about going up to Northern Wisconsin the first weekend in September because “Jon’s sleepover party will be that weekend. It ALWAYS is that weekend! (It had been that weekend for two consecutive years.)
I got my way and we never went up North that fall. Jon never had his party either, so I didn’t go anywhere.
The reality of you going on a trip has a 100% possibility if you decide to do it and put in on your calendar. It has a 0% possibility if everything else goes on the calendar first. Take the first step, and start planning now!
You Should Go Anyway 
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