Where to Next?

Expert tips to help plan your next trip & travel smarter and safer

by Barbara and Jim Twardowski, RN on July 14, 2015 - 3:21pm

Quest Summer 2015

Traveling can be scary, especially if you have a physical disability. In my own travels over the years, I’ve been trapped in a bathroom, dumped out of a car onto Fifth Avenue, toppled over in a moving bus, stranded in a subway tunnel and even showered with glass after accidentally shattering a revolving door. Despite its inherent challenges, though, traveling also can be an exciting and uniquely rewarding experience. 

Author Barbara Twardowski visits Chicago's Millennium Park.

For the past 20 years, my husband, Jim, and I have written about accessible travel — and enjoyed doing our own first-person research along the way. I have a progressive neuromuscular disease — Charcot-Marie-Tooth disease (CMT) — and in that time, I have gone from walking with a limp, to using crutches, to using a manual wheelchair, to today using a power wheelchair. But seeing and experiencing new places has been worth every difficulty we’ve encountered. 

Together, we’ve seen the Mona Lisa, toured the White House, eaten beignets in New Orleans, stood on top of the Empire State Building, rode the London Eye, cruised to Canada and glided down the San Antonio River. From these and other adventures on the go, we’ve learned a few important things — namely, that traveling with a disability requires planning, adapting to the unexpected and packing a sense of humor. 

To expand on and add to that list, we’ve talked to accessible travel mavens, including others living with neuromuscular diseases, to offer some tips to help you get the most out of your next trip.

Plan but adapt

For three decades, Liliana Ceccotti has planned numerous trips for her family. Her son, Santino, has spinal muscular atrophy (SMA) and began using a power wheelchair at the age of 6. Among their travels, the Ceccottis have taken a six-week trip across the U.S. that included stops in 21 states and visited numerous international destinations, including Rome, Paris, London, Montreal and Barcelona.

Santino Ceccotti with his parents in Charleston, S.C.

“Planning a trip can be difficult and extremely stressful. The first issue is how to get from the airport to the hotel; the second is to make sure the hotel is wheelchair accessible: Can the wheelchair get through the doors, and is there enough of a turning radius to move about the room? Lastly, how will you go sightseeing? These may seem like simple questions, but the reality is they require a lot of research,” says Ceccotti, who spends months investigating such access questions before trips. 

And despite checking and double- checking, things can still go wrong. “Many times, what was ‘wheelchair accessible’ to someone in Europe was not to us,” Ceccotti says of her family’s travels there. For instance, when they arrived at a hotel in Paris that was booked specifically because of its wheelchair access, Santino’s wheelchair did not even fit through the doorway. The hotel did eventually rectify the problem, but the example is still telling.  

To minimize such problems, Ceccotti always records the names of people who answer her questions about accessibility and takes that information with her when the family travels. She also recommends speaking only to managerial level individuals and not just the person who happens to answer the phone. 

Equip yourself

Some people with neuromuscular diseases require “extra baggage” when traveling. For example, I use a power wheelchair at home but frequently store a manual one in our wheelchair-accessible van. The manual chair enables me to enter buildings with one or two steps at the entrance or hop over the threshold to enjoy the view from a hotel balcony. Having a backup chair is always a good idea if you will be covering a lot of ground or hilly terrain — think theme parks, botanical gardens and shopping malls. Additional equipment we frequently haul includes: a 3-foot-long portable folding ramp, portable bath chair (discreetly stored in a garment bag), power wheelchair charger and a transfer board.

When Dick Dayton, who has ALS (amyotrophic lateral sclerosis), wanted to visit his daughter in California, he spent three months coordinating equipment and services to ensure that his 14-day bicoastal trip would go smoothly. Dayton rented an accessible minivan, contracted with a local service to provide daily personal and health-related services (bathing and stretching sessions) and contacted his airline to request assistance with boarding at both airports. And by taking advantage of MDA’s national equipment program, Dayton was even able to borrow a power wheelchair for his time in the Golden State. To secure the chair, Dayton worked with his local MDA office, which in turn coordinated with an MDA office close to his daughter’s home — and the plan worked without a hitch. 

MDA families who are planning to travel within the U.S. can contact their local MDA office to inquire about items that may be available for temporary use through the organization’s national equipment program. The availability of specific equipment varies by location. 

If by air

Cory Lee enjoys a view of the rock formations known as the Twelve Apostles along Australia's Great Ocean Road.

When it comes to choosing a mode of transportation, the options are to drive, take a train, board a ship or catch a plane. Each presents a number of pros and cons depending on where you want to go, your budget, and your physical needs and abilities. Before booking a reservation with a transportation service, review the company’s website to learn about services and policies for people who have disabilities.

Did you know Amtrak gives a discount on fares to travelers with disabilities and some cruise ships require guests with a disability to travel with a companion? 

Perhaps the most convenient but admittedly stressful way to get from one place to another is by flying. Maneuvering through huge airports, lugging heavy suitcases and traveling with a wheelchair may prove difficult for people who have a neuromuscular disease. But for some destinations, flying still makes the most sense. 

 “The biggest obstacles to traveling for people with disabilities would be flying,” notes Cory Lee, a travel enthusiast who has SMA and regularly blogs about accessible travel (curbfreewithcorylee.com). “I get a lot of emails from my website visitors saying that they have had a bad experience one time with flying, and now they’re scared to try it again.”

Lee doesn’t mind traveling by plane, but he has learned a few tricks for making the experience go smoother. After the joystick to his power wheelchair was lost by an airline in London, he now stores it in a carry-on bag, along with his headrest and footrest. During the flight, Lee sits on his wheelchair seat cushion, which makes for a much more comfortable ride. 

“I definitely think air travel still needs to come a long way,” Lee says. “Maybe one day, we can actually take our wheelchairs on the plane.” (For more, see Airport Security.)

Rest easy

Finding an accessible hotel in the U.S. is fairly simple, but it is important to book early and be specific about what you need. Most properties have a small number of accessible rooms. If walking a long distance is problematic, ask for a room near the elevator or lobby. 

“Roll-in showers are really a wild card as there are just so many different models out there, and accessibility also depends on the installation. A common problem with roll-in showers is that the shower controls are located out of reach for someone sitting on the built-in bench. And that’s a big problem if you are traveling alone. I also see lips on some that aren’t installed properly,” notes Candy Harrington, author of nine books on accessible travel including her newest, Resting Easy in the U.S.: Unique Lodging Options for Wheelers and Slow Walkers

A new and welcomed addition to hotels is the pool lift. Thanks to ADA (Americans with Disabilities Act) regulations, these immersible chairs, which allow someone who cannot climb steps to enter and exit a pool, are now standard at many hotel pools. Even if you do not see a lift beside the pool, don’t assume there isn’t one. Contact management and ask — some hotels use portable lifts that are stored out of sight.

If you are traveling abroad, arranging accommodations becomes more complex. “You do need to make sure that the property you choose has an elevator large enough to accommodate a wheelchair, though, as many older properties don’t,” Harrington stresses. “And if they don’t have an elevator, make sure and get a room on the ground floor, not the first floor. In Europe, the ground floor is at street level, while the first floor is up one flight.” (For more on this topic, see Accessible Accommodations.)

On-site transportation

Getting around in a new destination becomes more complicated if you use a wheelchair. Power wheelchairs require an accessible vehicle with a ramp, and the same is true if you are unable to transfer from a manual chair to the back of a taxi. When determining the transportation options of a destination, you’ll need to know how to get from the airport to your hotel, as well as how to access area attractions and restaurants.

Some destinations, like New York City, have accessibility information on their Convention and Visitor Bureau’s websites, but most do not. When searching for transportation choices, investigate local taxi companies, public transportation, private cars and shuttle services.

The wait time for an accessible taxi can be much longer than a standard taxi. While in Boston, we were told our wait could be up to 90 minutes. In Paris, accessible taxis cannot be pre-arranged to pick you up at the airport or train station. However, once you are in the city, they are happy to schedule pickups in advance. It also helps if you speak French. 

Subway elevators are frequently inoperable, so we usually avoid them. But we did ride on London’s completely wheelchair-accessible high-speed railway — The Javelin — which took us from St. Pancras International to Westfield Stratford City, the location of a massive shopping center beside the Olympic Park.

If you use public transportation, plan the routes in advance of your trip and find out how to purchase tickets. Ask your hotel’s concierge for assistance coordinating transportation, especially if you do not speak the language. 

Overcome travel anxiety 

Last year, Jackie Witt, who has central core disease (CCD), took her first long trip alone. Witt, who finds climbing steps extremely difficult, frequently falls and is unable to carry more than a few pounds. So prior to the 12-day trip across the western United States she had planned, Witt felt anxious. “Because of my disability, I want to know ahead of time everything I’m going to be faced with, which obviously isn’t possible,” Witt confesses. 

But in traveling solo, Witt discovered she needed to be realistic about her abilities and not be shy about asking for and accepting help. For instance, she relied on fellow passengers to give her a boost up the steps of the coach, and despite part of her wanting to, she didn’t get off at every stop. “Going up and down the stairs can be taxing. I learned to pace myself,” she says. It’s OK if you can’t do everything. You learn along the way what you can and cannot do.”

In that respect, traveling with a disability is just an extension of living with a disability: We learn our limitations, so we can better know when and how to push ourselves to overcome them. 

“Taking that trip was possibly one of the most satisfying things I’ve ever done — just to know that I could do something like that on my own,” says Witt, who is already planning her next travel adventure.   

Barbara Twardowski has Charcot-Marie-Tooth (CMT) disease and uses a power wheelchair. Jim, her husband, is a registered nurse. The couple lives in Mandeville, La., and writes about accessible travel, assistive technology and related issues.

  1. Safari Tour at Global Wildlife Center (Folsom, La.) 
  2. Carousel at Morgan’s Wonderland (San Antonio) 
  3. River Rail Streetcar (Little Rock, Ark.) 
  4. London Eye (London, England) 

Most amenities or sites that are “wheelchair accessible” accommodate a manual chair, so if you use a power wheelchair, always confirm access in advance. 

Everyone has to pass through a security screening before boarding a plane. The Transportation Security Administration (TSA) personnel have received training on screening those with disabilities and medical conditions, but travelers also can call TSA Cares, a helpline for passengers with disabilities and medical conditions, to ask any questions regarding policies, procedures and what to expect before a flight. The toll-free number is (855) 787-2227. The helpline is open Monday through Friday, 8 a.m. to 11 p.m. EST; weekends and holidays from 9 a.m. to 8 p.m. EST.

For more TSA tips on traveling with disabilities, visit tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions.

In a recent impromptu trip, Richard McBride, who lives with ALS, left his home in Oregon and headed down the state’s coastline — only to find that there were no accessible rooms available when he reached his destination. McBride recounts this tale and the lesson he learned about making reservations in a recent blog post.

One reservation service that McBride would have benefited from is BrettApproved.com. Founded by fellow wheelchair user and frequent (and formerly frustrated) business traveler Brett Heising, the travel and entertainment website allows people with disabilities to book accessible accommodations and even rate the accessibility of hotels, restaurants and other venues. 

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