Raising MS Awareness Year-RoundTraveling With Multiple Sclerosis
Your MS symptoms shouldn’t prevent you from planning the perfect vacation. United Spinal Association’s Able to Travel program can alleviate the stress involved in booking an accessible trip.
By Tom Scott
Traveling with a disability such as multiple sclerosis (MS) can be a stressful experience. Some individuals are so intimidated by the prospect of encountering accessibility issues away from home, that they are reluctant to plan a dream vacation or family getaway.
Air Travel Headaches
Helen Poulos and her husband Bill, a U.S. Army veteran who was diagnosed with progressive MS, have dealt with the typical fear and frustration experienced by many people with disabilities, as well as their family members and caregivers, in making accessible travel arrangements. The Poulos’s worst experiences have involved air travel and the handling of mobility equipment by some airlines.
“My husband uses a power chair. The airlines really do a number on wheelchairs. Unfortunately they do not realize that this equipment is usually very expensive and are extensions of the people that use them,” Helen says.
On past flights, Bill Poulos has had his power chair taken apart and reassembled improperly, tossed on a conveyor belt and returned to him battered or broken, and has waited hours for airline mechanics to perform repairs. “My husband’s chair is his freedom. He gets so upset in these situations. But the airlines are nonchalant about it. They really need to do a better job and change their policies on how to handle mobility equipment,” she adds.
Finding a Knowledgeable Travel Agency
To alleviate the burden of booking their own travel arrangements, Bill and Helen have sought the assistance of a travel agency with a unique understanding of the accessibility needs of people with disabilities called Able to Travel (www.abletotravel.org). Offered through United Spinal Association, the agency’s staff have dealt with a variety of accessibility issues that travelers with disabilities encounter, including accessible transportation to and from the airport, stowage of wheelchairs or other mobility equipment on board an aircraft, accessible hotel accommodations, and access to medical equipment.
“Bill and I have always wanted to travel more, but we were very nervous about it. Able to Travel really eased our minds and have been very accommodating. Their agents have brought back our confidence to travel,” Helen says. “The first trip we booked with them was a Celebrity Cruise to Panama and it was a very good experience. They made sure our bathroom was fully accessible with an elevated toilet and grab bars in the right places.”
Mary Peterson, travel coordinator for Able to Travel, has been instrumental in arranging numerous trips for the Poulos family, including their cruise to Panama, as well as Costa Rica, Hawaii, Barbados, and most recently, the Mediterranean.
Bill and Helen also enjoy participating in cruise excursions, which can be a challenge to book for people with disabilities. “Unfortunately, we have found that many aren’t accessible. But Mary has been great in helping us find those that are available,” Helen explains.
“It is very rewarding knowing I can help a couple like Bill and Helen have an enjoyable and relaxing travel experience, especially if they haven’t had much luck in the past,” Peterson says. “There are more accessible travel options than ever before. Cruises are a prime example. Some cruise lines have added over 50 accessible cabins to ships within their fleet, including lifts to get in the pool and hot tub, as well as wider corners and pathways.”
An NYU graduate who has worked over 10 years as a travel agent, Peterson spends a considerable amount of her day on the phone with clients, getting to know more about their needs and researching accessible destinations around the globe. Taking a more personal approach than other travel agents, Peterson has heard her share of horror stories over the years, such as travelers realizing far too late that their hotel or resort does not include rooms with roll-in showers or grab bars; that there is no accessible transportation near their destination; that the airlines were not notified of their adaptive equipment; or that their cruise living quarters were not compliant with the Americans with Disabilities Act (ADA).
“Dealing with a wide-range of clients, it is extremely important to be knowledgeable of various disabilities and conditions as to avoid these issues––for instance knowing the level of injury in a traveler with a spinal cord injury and how this affects their mobility, or whether someone has relapsing or progressive MS and what types of symptoms or exacerbations they experience. This insures that I address all of their specific accessibility concerns when preparing their travel itinerary,” she says. “Most of the travelers we assist just want reassurance that someone is there if they need help. That means being available to answer calls on weekends and really taking the time to get to know them. It can get stressful at times, but it is a very rewarding job. I couldn’t imagine doing anything else.”
Before pursuing a career in travel, Peterson spent two years in nursing school, which she says has made it easier to work with clients that have various medical conditions. She has also personally experienced the affects of an autoimmune disease. “I was diagnosed with Lupus at a young age. When I talk to clients, specifically those with MS, they sometimes ask, ‘How do you know so much about the pain I’m going through?’ When I explain my own situation, it really helps build trust with the client,” Peterson says.
Know Your Rights
And trust in a travel agency is a top priority for many individuals with disabilities who just want to enjoy a fully accessible vacation or trip without any hassle. As the Poulos family and others living or coping with MS have realized, there is still room for improvement in accessibility. Many view air travel as a good starting point to begin addressing these concerns.
Kleo King, senior vice president of Accessibility Services at United Spinal Association, urges travelers who have encountered accessibility issues with airlines to become familiar with their rights as passengers with disabilities before booking future flights.
“The Air Carrier Access Act, the laws that mandate air travel accessibility for people with disabilities has recently been expanded as of May 13. United Spinal and Able to Travel have a thorough understanding of these laws and can answer any questions you may have. We also offer a free booklet called Accessible Air Travel–A Guide for People With Disabilities that highlights how to adequately prepare for a multitude of air carrier procedures, and offers information about requirements for foreign airlines, what to expect in terms of equipment liability, how to file a complaint, and airport screening requirements.”
For more information on accessible travel or to view accessible travel packages currently being offered by Able to Travel, please visit www.abletotravel.org.
To download a free Accessible Air Travel–A Guide for People With Disabilities booklet, please visit www.UnitedSpinal.org and click on the “free publications” link.
Hi…lots of great information. Thank you. I have also added a link to your web site and some of the things mentioned in your newsletter. Also want to say hi to Stuart above as he does a wonderful job with his web site and shares alot of good information. Feel free to visit our MS web site at mcmsgroup.com
Good article and good advice to seek out a travel agent with experience and knowledge of traveling with disabilities. I must say, though, that the article has a big focus on fearfulness. Now, I have traveled with MS and I have had frustrations, but fear? Intimidation? Not! Yes, we have to speak up and make our needs known. I was turned off at the start of the article, with focus on such cowering emotions. I am co-facilitator of a large MS support group and I know a lot of people with MS locally, nationally and even internationally and I don’t know anyone with “fear of flying” due to MS. Some have said it’s too difficult and found other ways to travel or stopped travelling entirely, but not because they are afraid or intimidated. Yes, it’s a PITA to find accessible facilities and to transport my DME, but it doesn’t scare me.
I also have MS and use an electric wheelchair. I have flown several times and do not let my MS interfear. I use an Permobile C350 (issused by the VA) the weight is 350 lbs. This limits the type of aircraft I can use. Next month I am going to the National Vetran Wheelchair Games in Spokane, WA (http://www1.va.gov/vetevent/nvwg/2009/default.cfm).
Thank you all for the feedback. Lots of luck Donald on your trip to the Games! When you get back, let us know how everything went.
I just got back from Bermuda. It was a last minute business trip for my husband, and I was able to go. The flights on JetBlue were wonderful, they were very accomadating. Although I arranged ahead of time to have a wheel chair waiting, they didn’t but took care of it right away. I would not send anyone with any disability to Bermuda. I am able to walk small distances with a cane, but need a wheelchair for most sightseeing.(wheelchair is small titanium fold up) We took the bus service and the drivers would not let us take my wheelchair on the bus. They said they weren’t allowed. We didn’t believe that and argued with every single bus driver Eventually they let us on, mostly because of the other passengers agreeing with us. It was very stressful and upsetting to me. (the bus drivers were correct, they are NOT allowed to take wheelchairs!) Upon arriving home I e-mailed the Bermuda Dept. of Tourism and explained what happened. That was over a month ago and I have not received any reply.
We are traveling to Bermuda this coming August. My husband is a full time wheelchair user. ABLE TO TRAVEL
I used to drive an accessible cab in Chicago and heard stories about airlines taking wheelchairs apart and batteries freezing as a result. One couple told me they simply tell the airlines the chair cannot be taken apart. They say airline personnel are happy to find a place for it in the cabin instead - they don’t want the hassles of taking it apart and trying to get it to work afterwards any more than you do.
If you’re traveling in or to a city like Chicago that has accessible cabs I recommend keeping it simple when trying to get one. There is a number in Chicago to call for an accessible cab, but if you’re at the airport or a hotel or other location that has cabs waiting you’re probably better off having the doorman, security, or other personnel get you an accessible cab from those waiting or passing by. Drivers are usually much happier to skip to the front of the line than to go out of their way and wait.
If you’re traveling with family or others who will be with you most of the time I suggest leaving the power chair at home. A folding wheelchair is easy to accomodate so long as you can transfer without a lot of help.
My other M.S. traveling concern is heat sensitivity which can trigger a relapse. I was surprised this was not mentioned as it is a strong influence on WHERE I can travel. My muscles feel weak and I can get light-headed and exhausted/tired within minutes of exposure to heat. I have done the ice packs and cold water things to cool down when trying to adjust to the heat. Any others with this symptom…any suggestions?