The Good, Bad, and Worst of Traveling in a Wheelchair
I Traveled Frequently Before My injury, for both business and pleasure. I attended medical research conferences around the world, and my family and I enjoyed vacations on a regular basis. I didn’t want to give that up just because I spend most of my day in a wheelchair. But I soon learned that traveling in a wheelchair was a much more challenging endeavor than I’d imagined. I didn’t give up, and as a result, I can share with you everything I wish I’d known on those early trips.
While each form of transportation has its own set of challenges for a person in a wheelchair, these are the important issues to address for all types of travel:
• Planning in advance is critical. Whenever possible, work with a travel agent who has expertise in arranging trips for people with disabilities. You want to be sure that your accommodations, and any tours or excursions, are accessible. In terms of air travel, most large US airlines have specialty agents who can assist with disability travel. They are particularly helpful if any of your equipment is damaged while being transported.
• Making your needs known to the staff is essential. While traveling and at your destination, make sure that the crew and staff know about your limitations; inform them when you need special treatment or encounter a problem. Emergency preparedness lends peace of mind to you and your companions before and during the trip. That means acknowledging that big problems can happen, so use a credit card that includes medical transport by air if needed. In some situations, consider purchasing trip insurance, usually about 5 percent of the total cost of your trip. A travel agent will advise when purchasing insurance is a good idea.
There are three options for planning a travel experience. You can do it yourself (DIY), use a travel agent, or go on a tour. It’s best to wait to try DIY until you’ve completed at least five trips, since there are many tasks—hotels, airlines, trip insurance, and ground transportation—that will require hours of online and telephone time. Even someone who was an experienced traveler before acquiring a disability faces potential obstacles to an enjoyable trip. That’s why I recommend that you work with a travel agent who has experience in arranging trips for people with your particular needs or go on a tour that is designed for people with disabilities. A number of organizations, such as AAA Member Choice Vacations, AARP (formerly called the American Association for Retired Persons), and Costco, offer all-inclusive packages (airfare, transfers, hotel, food and drink, and tours). And, of course, you can talk to friends who use wheelchairs so that you can learn from their travel experiences. Planning means getting started six months before your trip whenever possible. The number of accessible places to stay is limited, and the details of excursions at your destination require extra time to plan as well.
Tours and cruises are the easiest trips to take. There are several companies that specialize in accessible tours, which you can find online or through a good travel agent. These groups are usually cost-effective compared to regular tours because there’s a pooling of expenses—six couples can share the cost of renting a wheelchair lift van, for example. And the places where you stay during these tours usually have experienced staff to help. As I was writing this book, my wife and I found a ten-day tour on wheelchairtravel.org for ten to twelve people to Lisbon, Portugal, for $3,500 per person. That included hotels, meals, ground transportation—all major expenses except for airfare. The tour company does all the planning (museums, historic sites, tickets to cultural events, and so on), which saves an enormous amount of work.
Cruises are particularly well-suited for the wheelchair traveler. You stay in the same cabin (room) during your travels, while the ship sails from place to place. Recently, several cruise lines have begun to offer special excursion tours for wheelchair users. For example, Disney Cruise Line has forty-six accessible shore excursions in thirty-nine ports around the world, making cruise vacations more accessible than ever to people with disabilities. The excursions are led by professional tour guides and feature accessible accommodations. Specialized vehicles with wheelchair ramps or lifts are provided, and the tours follow step-free routes to ensure access for people with limited mobility.
Using a credit card for your travel expenses will enable you to obtain insurance at a low-cost or even as a benefit of the credit card. It will also facilitate resolving any disagreements with the travel partners involved in your vacation (such as airlines, ground transportation, car rentals, hotels, tours). For people with disabilities, the best choice is the card that offers the most comprehensive travel insurance, compensation for delayed or lost baggage, and medical coverage. Paying attention to details will make the difference between a great trip and a horrible one. If, suddenly, you’re unable to take a trip because of an illness, a death in the family, or a natural disaster, you’d face a huge financial loss if you didn’t have travel insurance. The right credit card can offer travel insurance for coverage when your travel doesn’t go as planned. There are several websites that compare the travel benefits of different credit cards, such as NerdWallet and WalletHub—and you should also ask your frequent-flyer friends for advice. Because these benefits can and do change, you may want to call customer service to confirm what you find online. As of 2021, affordable cards that offer good travel insurance, several travel benefits, and generous reward points are American Express Gold ($250 annual fee), Chase Sapphire Preferred ($95 fee), Citi Premier ($95 fee), and Capital One Quicksilver Cash Rewards (no fee).
Your accommodations—where you sleep, shower, and navigate with your wheelchair, cane, or crutches—are a huge part of your enjoyment of the trip. If it’s a domestic trip and you’re choosing the hotel yourself, look for national-brand hotels that were built since the passage of the Americans with Disabilities Act in 1990; these should be fully accessible.
The three most important features of the room are 1) the size and layout of the bathroom, especially if you need a roll-in shower; 2) location on the lobby floor, so you don’t have to take an elevator to your room and you have an easy exit in case of emergency; 3) a bed with a height that makes transfers safe and that has a mattress with the correct firmness to avoid high-pressure areas on your bony prominences. It’s best if the room is large enough to allow easy movement around the bed and other furniture.
Several hotel chains, such as Hilton and Marriott, have good room layouts across all price categories. For a more expensive option, Ritz-Carlton has an excellent accessible room design. Whenever possible, request a photo of the room (with dimensions) before you book. Because accessible rooms are in short supply, you should make your hotel reservation first before booking your transportation.
If you’d prefer to stay in a home rather than a hotel, there are several websites that list accessible properties for rent. The best-known are Airbnb and VRBO, which, combined, list more than two million properties, many of which are wheelchair accessible. In 2020, I searched VRBO for wheelchair-accessible two-bedroom condos and apartments that could sleep at least four people in Panama City Beach, Florida, for one week, and sixty-three listings matched my search! Many had prices of $150 to $200 per night. Even if the listing has great reviews, it’s absolutely necessary to contact the owner, because the reality is that very few listings will accommodate someone with a severe disability like mine.
Airline reservations: Booking a flight is simple, especially with sites like Expedia or Travelocity, where you can check out the best fares and connections. Go for the first flight of the day, if possible, since it’s most likely to be on time. Whenever possible, choose a nonstop flight or direct (one stop, no plane change) so you don’t have to change planes. If your trip has a connecting flight, make sure the layover is at least ninety minutes. This will allow you the time to move to your next departure gate and use the restroom, if necessary.
Once you’ve determined an itinerary, make your flight reservations. When you receive your confirmation number, call the airline and ask to be connected with the disability or accessibility office. Some airline websites have the ability to indicate that you have a disability and require help, but often, you’ll end up in the bulkhead seating in the front row. This is the worst place for me to sit, because it has no storage at your feet and no room to stretch your legs. Therefore, you should always speak to someone in reservations. They will give you preferential seating and make sure that the ground staff know that you’ll be in a wheelchair and will need help boarding.
Ground transportation reservations: If you’re not part of a tour, you will need to arrange for transportation from the airport to your accommodations. There are three options:
1. Rent a car or van (be sure to specify what kind of controls you need based on your abilities, and, if possible, choose the same model as the one you use at home).
2. Use the hotel shuttle or an airport shuttle that will take you to the hotel.
3. Use accessible public transportation available at the airport.
Checking in and getting to the airport: Check in online twenty-four hours before departure. For peace of mind, I like to have both a printed copy of my boarding pass and a digital copy on my phone. Even if you’ve purchased a ticket that doesn’t include checked baggage, you’ll likely not be charged to check bags that contain medical supplies and equipment. However, it is essential that you bring your medications for the entire trip with you on the plane.
Give yourself plenty of time to get to the airport, and if there’s baggage service outside the terminal, use it; you’ll save the trouble of carrying your baggage or finding a porter. If you have time, go to the check-in counter. The agents can help you navigate the airport, go through security, and get to your departure gate. Let them know you will need an aisle chair (the chair used to take you from the jetway into the plane; the aisle space between seats is too small for a wheelchair) to get to your seat if necessary. While you are at the counter, get new boarding passes, and get a gate check tag for your wheelchair. If the plane is large enough, and your wheelchair folds up small enough, you will be allowed to take it on the plane with you. Do not let the check-in counter staff take your wheelchair. If there’s a problem with the plane and you need an electric chair, you could be stuck in an airport wheelchair for hours, with no seat cushion and no way to move by yourself. Even more important, you may not be able to switch flights because of the time required to move your wheelchair from one plane to the next.
Electric wheelchairs must be stowed in cargo, and the check-in staff will ask you what kind of battery you have. I find it useful to have a printout from the owner’s manual about the battery and how to shut it off. It is important that the battery be a dry cell or gel battery, not a lead acid battery. If you have a lead acid battery, you will be in for a difficult time. The battery must be removed from your chair, placed in a secure box, and transported separately, because of the risk of the acid spilling in the cargo hold.
Going through security: The airlines are responsible for helping you get to security. Tell the ticket agent as soon as you check in that you will need assistance. There are usually two lanes at the security gate. You can use the wheelchair-accessible entrance or the TSA lane, which is usually better. It’s worth spending the money ($75 in 2021) necessary to obtain a TSA Known Traveler Number (KTN). With a KTN, TSA will usually test only for explosive compounds by swabbing your chair with a small wipe. Without a KTN, TSA must perform a manual screening. In most airports, this means a complete pat-down from shoulders to feet, as well as an inspection of your pants, your chair cushion, and anything else they think is necessary. This can take up to ten minutes and is frequently intrusive and unpleasant.
Getting to the gate: Once you arrive at the departure gate, introduce yourself to the airline personnel. If you weren’t able to book adjoining seats for you and your traveling companions, the gate agent may be able to change your seat assignments. Many times, they will automatically want to put you in the bulkhead, which is the first row in any class of service. But the bulkhead has no place to store items under the seat in front of you and usually doesn’t have an armrest that can be lifted out of the way to make a transfer easier. Some travelers prefer the bulkhead section, though, because it means less time in the aisle chair and allows for the quickest exit.
Boarding the airplane: This should be relatively easy. Park your wheelchair at the end of the jetway, then transfer to an aisle chair. An aisle chair is a very narrow chair that can be pushed down the center aisle. Most people will be lifted from the chair into a seat. However, because the armrests raise up, you can do a sit-pivot transfer if the height of the chair and seat are similar. It’s important to bring a bag to carry wheelchair parts that might be lost or damaged from travel and handling. I usually remove my head rest, thigh guards, and joystick. I strap my seat cushion with the safety belt and leave it attached to the chair because it’s too heavy to carry on the plane. If the weather report predicts rain or snow, I cover the cushion with a plastic sheet to keep it dry, since it may be transported outside to your next destination.
Enjoying the flight: Once you’re onboard, enjoy the flight. Since you’ll be among the first passengers on the plane, use the extra time to introduce yourself to the flight attendants. Make sure that you shift your weight every hour by leaning forward for five to ten minutes, or, if you are strong enough, pushing up as you do in your chair. If you need to go to the bathroom, call for assistance to get there. If you have a urine bag, bring along a bottle with a screw cap so that you can empty it at your seat.
Getting off the plane, retrieving your baggage, and assessing any damage: You will be among the last people off the plane, and will repeat in reverse the steps you used to get on. The crew can’t leave the plane with you on it, so they will get you to your next flight or to baggage claim. If you have a tight connection, ask the flight attendant to contact the gate agent for your connecting flight. Once you’ve arrived at your destination, the baggage handlers will bring your wheelchair to you on the jetway so you can transfer there and move yourself to baggage claim. Check to make sure there’s no damage to your wheelchair. The most common serious damage is to the clutch, which is disengaged to push the wheelchair manually. Frequently, the baggage handlers pull it out too far and damage the mechanism so it can no longer be pushed and, when you stop, it won’t engage the brake to stop you. The plastic parts of the chair are often damaged when someone grabs them to lift the chair. Check your baggage while you are still at the airport, especially if you have a shower chair, because it’s heavy and may be frequently dropped. If you find any damage, report it immediately in the baggage claim area. Take photos of the damage and make sure you have contact information for the airline’s repair company.
Finding your van, car, or driver and getting to the hotel: To get to your accommodations, you have several options. The least expensive is to use public transportation such as the subway or local bus. In large cities, you can frequently arrange for a handicap-accessible taxi. Or you can rent a car or van and meet the driver outside the terminal. Your vacation has begun!
Checking in at your hotel: When you check in at the hotel, you may experience a moment of panic if you are told that there are no accessible rooms available. This happens to me almost 50 percent of the time. This is not acceptable. In the US, hotels are required by the ADA to have accessible rooms, and your confirmation should show that you reserved one. Hold your ground and speak to the manager. An accessible room will magically appear!
Checking out your room: When you get to your room, check that it has all the essentials. Does it have a bathroom with a roll-in shower, enough space to turn around, a shower wand, and correct toilet height (14–18 inches/35–45 cm), as well as an acceptable bed (height and firmness) and enough room to maneuver?
Check out the key features of the hotel: Before you unpack, make sure you know the location of the fire exits, ice machine, fitness room, pool, and restaurants. Then, freshen up and introduce yourself to the concierge and the porter. The concierge can be very helpful in recommending nearby restaurants that you can roll to, accessible tourist sites, and good tours. The porter will be essential if you have rented a car or need a handicap taxi.
Meeting with your tour group: Usually, fellow members of a tour group will be staying in the same hotel, especially if the tour is designed for people with disabilities. When you check in, there should be information on where to meet for dinner or the next day’s excursion. If you experience any problems, contact your tour guide or the company sponsoring the tour.
Getting around efficiently and safely: If you’re not part of a tour group, the three options for transportation from the airport are the same for sightseeing at your destination. If the city has designated accessible taxis and subways, the concierge can help you with a reservation or advice on the best way to use the subway.
Keeping your routine intact: Traveling is difficult on your body’s biorhythms, because the dehydration you experience in an airplane, as well as the limitations on movement, can lead to constipation and/or fatigue from lack of sleep, especially if there’s a significant time-zone change. As soon as you’re settled at your accommodations, devise a plan to integrate the exercise, rest, diet, and hygiene routine you follow at home.
International air travel typically involves more airline rules, especially regarding carry-on luggage; keeping your wheelchair safe, because wheelchairs (especially power ones) are much less common outside the US; and passing through passport control and customs, which can be difficult with a power chair. There may be problems communicating in a different language, so it’s essential that you have a printout of your detailed itinerary for taxi, shuttle, and hotel personnel to read. I frequently print the instructions on operating my wheelchair in the language of my destination country (thank goodness for Google Translate!).
Domestic train travel: Trains are an excellent form of travel for short trips in a wheelchair. Trains are comfortable when you’re awake, but sleeping conditions on trains can be difficult, which is why I don’t recommend trips of more than twenty-four hours. In a sleeping car, there are usually upper and lower berths, which are difficult to transfer into and have mattresses that can cause unwanted pressure. If your destination is more than twenty-four hours away by train, consider other forms of transportation instead.
International train travel: Because many trains in Europe and Asia are high-speed, it’s rare that a trip will take more than ten or twelve hours. These trains have advantages over planes in that they usually bring you to the center of the city, which is more convenient. They are frequently less expensive than flying and avoid many of the security issues found in airports. If possible, upgrade from economy to first class, because you’ll have more room and better service for food and drink.
Local sightseeing tours: Almost all major cities have accessible bus tours; the concierge at your hotel can provide you with information, but I also suggest researching in advance. Big Bus Tours and City Sightseeing, for example, have tours in more than fifty cities. Many cities have made public buses wheelchair-accessible. In others, all buses are equipped with a ramp or a lift, and some cities have a separate fleet of wheelchair-accessible buses that can be accessed by calling the public transit office. The major advantage of using public transportation is that the cost is by far the lowest of any transportation mode; usually it’s the same for disabled and nondisabled passengers. If you plan to stay in one city for several days, you can usually purchase a multi-day pass that is good for three to seven days, allowing you to make several sightseeing trips at a low cost.
Multi-city tours: There are many companies that offer accessible tours similar to the ones they offer for nondisabled travelers. Bus tours are frequently much less expensive than other disability tours because they share the same tour guides and facilities. They also tend to use less-expensive hotels and restaurants. For sightseeing in a city, they are particularly cost-effective, since you won’t need to take taxis from place to place.
The pack-up-the-car-and-family-and-head-west trip has been a long-standing tradition in the US, and it remains one of the least expensive ways to travel. Plus, it gives you great flexibility to spend more or less time in any place along the way. You may consider visiting and/or staying at any of the national parks.
The biggest problem with road trips is that, at 65 mph (105 km/h), it takes a long time to get to your destination, which can be difficult for people with disabilities. I limit my car travel to about six hours at a time, because longer trips cause me too much pain and stiffness. Also, you might have to do most of the trip planning and hotel booking yourself, unless you are an AAA member or you have a travel agent.
Traveling by car in other countries is usually OK, but it’s not great. The major problem is a lack of accessible cars and vans. If you’re able to find one, the cost is usually much higher than it is at home. Also, navigating is difficult, even with GPS. Parking can be difficult, too, because vans are much larger than most cars and there are very few accessible parking spaces.
Cruises are a preferred mode of vacation travel for many people with disabilities. The greatest benefit is that you don’t have to pack up and change hotels during your vacation. You stay put and let the ship travel from place to place. Cruises also offer a wide selection of travel possibilities in terms of cost, duration, places to visit, amenities, food, entertainment, and flexibility. Recently, more cruise lines have been offering accessible rooms, which are larger than standard rooms, and land excursions designed for people with significant disabilities. My wife and I enjoy cruises because they are easy to schedule, you can easily make new friends, the food and entertainment are usually excellent, and the newer ships are easy to navigate in a wheelchair. Most times, the only drawback is the size of the room, which is often smaller than an accessible hotel room. But if you’re willing to forgo an upper-deck cabin or to accept one with no view, you can purchase a cruise at a very competitive price compared to other types of travel.
Medical emergencies are one of the most feared problems you may encounter while traveling. Travel can make you susceptible to illness because of stress, changes in time zone, altered diet, dehydration, and sleep deprivation. If you’re traveling in a developed country, there should be good emergency care nearby, and most medical and minor surgical problems can be handled well at any local hospital.
More complex surgery for critical care emergency problems should be taken care of at hospitals with specialized services. This is especially true if you have a stroke, because only comprehensive stroke centers can mobilize the medical team, sophisticated imaging, and therapeutic techniques needed to limit stroke damage. If you’re in a major city, this type of care will be readily available; if you’re in a rural area, the best course of action is to be transported by air (usually by helicopter) to the nearest critical care hospital. The situation is similar for SCI and TBI. There are hospitals with special teams and technology designated as level one trauma centers, where you should be transported as quickly as possible.
If you’re traveling internationally, the situation can be much more complicated. If you’re in a developing country, the likely course of action is for you to be taken to the nearest hospital for assessment. If you are critically ill, you should be airlifted to the nearest critical care hospital. A list of medical air ambulances is included in the Resources section, but usually your insurer will dictate which vendor to use. The cost of an air ambulance ($30,000 to $50,000, as of 2021) is usually covered in part by your medical insurance. You will also likely have the additional expense of being taken care of in a hospital by doctors who are “out of network,” which can leave you with a bill in the tens of thousands of dollars. This is the moment you’ll be glad that you purchased travel insurance to help cover the cost.
If traveling was important to you before your injury, I encourage you to find ways to continue that activity as your rehabilitation allows. Start with destinations close to home and get comfortable with the new normal of travel protocols for you before venturing farther out.
Travel after ANI is more difficult and requires more planning and more attention to detail. Unless you must travel internationally to see family, it’s best to make your first few vacations domestic ones. That way, you don’t have to deal with a language barrier, different laws, and an unknown health care system, should the need arise. You’ll also be spending less time in an airplane. Most important, you’ll be developing tactics that make for a smooth experience on future trips; through trial and error, you’ll learn what works best for you.
No matter your destination, be sure to carry with you print and digital copies of every detail regarding your reservations, including the carrier, your accommodations, transportation at your destination, and tour details. Travel will get easier for you with each trip you make. And although getting to your destination will be less carefree than it used to be, I guarantee it’s worth the effort.