The New York Times recently published an article entitled Six Simple Tips for Smooth Travel With a Disability. This article has been roundly criticized by a number of people in the disability community, and rightly so. Did they even contact any frequent travelers with disabilities to get their input? As a travel blogger who does my best to travel smoothly with a disability and knows the realities, I feel I must respond to this piece of nonsense.
These kinds of fluffy advice posts show up often, but not usually in such venerable publications as the New York Times. This one felt like a veiled ad for a travel agency, exhorting people with disabilities to hire someone else to do the planning for us without recognizing that many of us can’t or don’t want to do that. More importantly, the advice the post did give was sparse, inadequate and in some cases inaccurate. Even the premise of the headline was ludicrous. Smooth travel with a disability? Ha ha ha ha ha ha ha. Smooth-ish is the closest I’ve gotten, and that’s only happened a couple of times. One of those times, however, was my most recent trip as of this writing — so I do have memories of “when things go mostly right” fresh in my mind.
When traveling with a disability or writing articles about travel with a disability, please ask actual people with disabilities about our experiences. Ask more than one of us — we are a diverse community and our needs and travel preferences vary tremendously. With that said, here are my seven experience-based, realistic tips for smooth-ish travel with a disability — because seven is my lucky number and six tips just weren’t enough.
1) Travel with a disability usually isn’t smooth.
If you can accept this reality before you go, you’re far more likely to have a great time no matter what your journey throws at you. In my experience, the key to travel with a disability is being prepared for many possible mishaps, so when (not if) something goes wrong it’s less likely to be disastrous. A sense of humor goes a long way, too.
When you see photos of me traveling, it seems like I’m living it up without a care in the world. Most of the time that couldn’t be further from the truth. I’m having a great time, but I’ve been through a lot to get there and there’s so much you don’t see. Here’s a quick behind-the-photos reality check.
Near Chicago, IL. In between dealing with phone calls from the hotel clerk who was demanding “papers” for my service dog and saying she wasn’t allowed. After I got home, the manager apologized and refunded my money, but the experience marred my trip.
Sedona, AZ. I was traveling with an assistant who became so abusive, a few days after this photo was taken I had to flee from her with help from friends and call my dad to come assist me in getting home.
Coney Island, NY. The hotel didn’t honor my reservation for a room with a roll in shower and I couldn’t bathe for two days after arriving. Don’t worry, I showered by the time this photo was taken.
Please don’t let these experiences deter you — the good has greatly outweighed the bad for me when traveling. Travel with a disability isn’t easy, but it’s absolutely, 100% worth the challenge. Aside from the trip with the abusive assistant, I’ve enjoyed every trip I’ve ever taken, and I’ve never considered giving up my adventures just because things have gone wrong at times.
2) Plan ahead and call ahead about EVERYTHING.
Do research online. Read reviews. Talk to your airline, your hotel, your transportation service. Get the names of the people you talked to. I don’t need to make a separate numbered tip for each of the places you should call, because you should call all of them. The less well you know an area and the fewer people you know there, the more important this advice becomes. Note that even if you research and call, something could go wrong and something unexpected will almost certainly pop up.
If you hire someone to help you, such as a travel agency or guide, research them thoroughly. Do they have actual people with disabilities similar to yours on staff? If not, be wary. Talk to other people with disabilities who have used the service or tour — don’t just take the company’s word for it that everything is accessible.
3)The airlines may f*** with you and break your s***. Be prepared.
I’d love to see the New York Times print that in an article. The Air Carrier Access Act, which regulates air travel with a disability, is an antiquated and inadequate law. Many things can and often do go wrong when flying with a disability. Yes, ask the airline for help, but also be ready to help yourself. Have a backup plan if the airline isn’t giving you adequate assistance upon arrival. Bring written information about any special assistance you may require, especially if speech/communication is difficult for you. Read all relevant TSA regulations and ensure medications and devices are properly labeled and packaged as required. Be polite when dealing with the TSA. If you feel you’re being profiled or discriminated against, stay calm, document the officer’s behavior in the safest way you can and report them later.
If you use a mobility device, particularly a powered one, be aware there is a significant chance it could be damaged in the cargo hold. Before you travel, take photos of your wheelchair and a brief video of it operating properly as evidence in case something gets broken. Detach and carry on sensitive parts of the wheelchair like the joystick, or put bubble wrap over them. (Bonus tip: when you get home, if your wheelchair still works you can run over the bubble wrap to vent your rage at the TSA and anyone else who made your trip unpleasant.)
Print out instructions for how to put the device in freewheel mode to be pushed manually, and tape them to the seat. If you’re traveling internationally, try to include them in your destination’s native language — sometimes this can be found in online manuals for your wheelchair. Remember, airlines cannot charge extra to transport medical devices.
If you are a wheelchair user, this is more of a nail-biter than any Hitchcock film.
Service dogs must be allowed in airplane cabins at no extra charge — it’s the law in the USA and in many other countries. Be sure to read the airline’s policies about service animals and carry any required documentation with you. And FFS don’t try to bring your “emotional support peacock” on the plane.
I’m not Katy Perry… I don’t want to see your peacock.
Flying is difficult or impossible for many people with disabilities due to pain and/or difficulty sitting in an airplane seat, the lack of accessible restrooms on planes, frequently-damaged mobility devices and other factors. I prefer to road trip for these reasons. But for those who can and want to fly, I recommend Cory Lee’s book Air Travel for Wheelchair Users. This is a realistic book written by a power wheelchair user and covers the information you actually need to plan for air travel.
4) Choose your hotel carefully and call to verify everything. Know that things still might go wrong.
I recommend staying in large chain hotels. I’m usually a big supporter of small businesses, but unless you have specific information about a location’s accessibility, you are better off looking at well-known hotels. These corporations have entire departments devoted to ADA compliance. That doesn’t mean they will be fully accessible, but your chances of accessibility or of getting accessibility problems resolved are better than if you stay at Mary’s Motor Inn.
Always call to confirm your reservation and that you are in an accessible room of the type you need. I’ve had recurring problems with booking rooms with roll in showers only to arrive and find they put me in a room with a bathtub. Sometimes calling ahead prevents this… and sometimes it doesn’t. If it doesn’t, be prepared to change rooms and/or hotels. The hotel should move you to a different room or hotel and cover your transportation free of charge.
I’ve asked for photos of wheelchair accessible rooms on a few occasions when I had specific needs and wasn’t sure if the hotel understood. You can also do a search online, as some hotels will include photos of the actual room. As for the concierge stocking your room with food? Unless someone else is paying, my budget extends to the Holiday Inn Express. But they do have friendly staff who will help you with the free breakfast buffet.
5) Don’t jump to anger the moment something goes wrong.
I know it’s easy to get frustrated when your hotel gives you the bathtub room when you needed a roll in shower, or your wheelchair accessible taxi is late. Try to stay polite but firm. That doesn’t mean you should put up with discrimination, but screaming and raging rarely accomplish much. If you’re having accessibility problems, take videos, photos, and names. If you’re dealing with a large business, you can use this information to complain later and you’ll probably get a refund. You have the right to travel and be treated with respect; carry yourself accordingly. Dress nicely, clean the dust off your mobility device and be confident — it’s amazing how much better others will behave towards you. Most of the time.
6) This is your trip and you get to decide what is important to you.
You don’t need to compare your travel to what able-bodied people do, or choose activities because they’re what you’re expected to do on vacation. It’s about quality, not quantity. I personally love theatre, museums, concerts and fine dining. I also enjoy the outdoors when the weather is nice. But I once spent most of a trip to Colorado visiting legal pot dispensaries. I felt a bit awkward when people asked “What did you do on your trip?” and I only had a few other things to list. But I have chronic pain that was flaring up badly and I needed to explore the options available there. I will say it was one of my most relaxing trips ever. 😀
Sometimes less can be more. If possible, plan for a rest day during your trip. I admit I hate doing this, because travel is expensive and I want to make the most of every second. But sometimes that means giving yourself and the people you’re traveling with a break. Plan a day where you sleep in and relax for several hours. Do something simple at your hotel or nearby. Meet some friends at a restaurant. You can still have a wonderful day without trying to cram in as much as possible. Your body and mind will thank you.
7) Believe in yourself.
Yes, you can travel with a disability. We face many challenges when traveling, but with the proper planning, you can do just about anything you want to do. I know I sound like a cheesy motivational poster, but it’s true. Don’t let other people or your own doubts hold you back. I see too many people with disabilities giving up on themselves, thinking they can never be or do certain things because of their medical condition, financial situation etc. It’s easy to feel that way in a world that often makes life difficult for us. The system is broken and fighting for a decent quality of life can be overwhelming. But as a community, we are tough and we persevere.
I know people with all kinds of disabilities, from invisible illnesses to canes to ventilators who love to travel. And so that is why I believe if you want to travel, if you are willing to fight and save and sacrifice and struggle, eventually you can make it happen. I have. And if I can help you find the freedom I have experienced through travel, I will gladly do so. But I will never tell you it’s going to be smooth. I can only promise it will be interesting.