Living with ALS and the art of comfortable disabled travel
CHARLOTTE, NC: While sipping on a glass of wine at a sidewalk cafe in the twilight shadows of the Rialto Bridge in Venice, a longtime traveling companion looked up at me from his cup of tea and sighed sadly, “I’m afraid this is our last trip.” With a note of heavy remorse, he spoke softly, “It’s just too difficult any more.” The trials and travails of disabled travel.
His words saddened me. I had begun my personal globe-trotting quest in my mid-30s and, in retrospect, I regret that I didn’t start sooner. Sometimes, however, life just gets in the way.
Moving forward until you stop
Since being diagnosed with ALS, I made a promise to myself to emulate the Energizer bunny and try to keep going until the battery runs out. So far I have done fairly well by visiting nine new destinations to bring my current total to 83 countries.
For the past 13 months, I have been organizing a return visit to Italy because I have so many fond memories there. This time, however, the planning has been considerably more involved due to the logistics of ancient uneven cobblestone streets, accessing hotels and restaurants. And organizing transfers for eight healthy travelers plus one disabled wheelchair participant.
In the process, I learned a great deal which serves to tell me that if wanderlust is part of your lifestyle, then keep moving. A disability is not a deal-breaker, it’s only an excuse.
Scottish author Robert Louis Stevenson once wrote,
“I travel not to go anywhere, but to go. I travel for travel’s sake. The great affair is to move.”
Of course, Stevenson did have the advantage of access to a fantastic railroad network that could whisk him into another world in mere minutes, but the point is, if you have the will, there is always a way.
Finding groups that work with disabled travelers
Whether you are coordinating a trip for yourself or as an escort for a small group, the key is to locate a service that specializes in working with disabled travelers. I wasted the first two months of my planning because I attempted to locate traditional transfer businesses that could adapt to our needs rather than seeking out companies already equipped to handle handicapped travelers.
It’s important going in to have at least a general idea of your logistical needs. For example, one company I contacted had all the necessary vehicles but he wanted to be with us 24/7 which meant the added cost of his accommodations and meals plus overnight garage services for the vehicle.
Though his transfer rates were relatively reasonable, the add-ons made the overall price prohibitive.
Another major consideration is dealing with someone who understands “American” English.
Reasonable facsimiles may appear charming at first, but they can become expensive in the long run if you’re not careful.
Obtain written documentation of what services will be provided, times, pick up locations, contact names, numbers, and information, and never, never, never be afraid to ask questions or get clarifications.
For the upcoming trip, I located an Italian company based in Rome that has worked closely with us since day one.
When Rome & Italy Group discovered that my power wheelchair would not meet space and dimension requirements for rail travel with me riding in it, they immediately offered the use of a manual chair for the duration of the trip for an additional 100 euros, or about ten dollars a day.
The manual chair gives me the added flexibility of navigating in places where the power chair is not convenient and vice versa.
In addition, Rome & Italy Group is arranging guide services, providing an English speaking driver, including all entrance fees, making our train reservations, doing all transfers between hotels, railway stations, and the airport as well as assisting me with my disabled necessities all for a single all-inclusive price.
The price-tag is not inexpensive but neither is it outrageous, especially considering the reduced inconvenience of my fellow travelers having to accommodate my special requirements.
Who knows what will happen, until, paraphrasing Yogi Berra, “It happens.”
A wise travel writer once pointed out that even in the best of circumstances “travel is travail.”
Never yet have I been on a trip where there was nary a glitch. The objective is to minimize snafus by expecting the unexpected. In this case, I feel confident that we have done our homework, and I am now relying on my personal experience plus trustworthy local knowledge to make it all happen with minimal problems.
Robert Louis Stevenson also stated once that “to travel is to live.”
Or as Daniel Boorstin once expressed,
“A traveler goes in search of people, of adventure, of experience. A tourist goes for sightseeing. Just like the question is more interesting than a statement, and a road more intriguing than a map, I aspired to be a traveler. Be brave. Go through open gates.”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up