Plugged in to Travel!

By Audrey King

Whether you’re a child who uses a ventilator, a teen with communication aids and a power wheelchair, or an adult with other assistive technologies, travelling is possible! Whether your daily technology needs are simple or complex, you too can enjoy the sights and sounds of far-off places.

It doesn’t matter how significant your disability is, or how much equipment you take. Even people with tracheostomies and the need for 24-hour ventilation have travelled internationally. All it takes to get started is a dream, a destination, planning, persistence and a sense of adventure.

Where do you want to go? Research it! Take responsibility.
Do you want to go to the next town to visit a relative? To a cottage? To another country? Contact others who have travelled with similar needs for equipment, accessibility and transportation. Ask questions. Contact disability agencies, individuals and organizations.

Find out the pros and cons of the different ways of getting there, and decide what suits you best. Most travel agents don’t have specialized knowledge about travelling with high technology such as power wheelchairs or ventilators, although some have become specialized in organizing trips for people with disabilities.

You’ll find lots of advice once you start looking. But don’t expect travel agents, or even others who’ve travelled with similar equipment, to know your particular needs and expectations. Every situation is different. Only you know what you need and want.

Research your ideas and your destination. Consider the options. If you are going to a place where there are many stairs, ancient buildings, rough terrain or no specialized transportation, you may choose to leave your power chair at home and take your manual wheelchair instead. Is this an option for you?

On the other hand, does the frustration of increased dependence on others to push you offset a greater opportunity for getting around and being able to see more? Are the extra maintenance and care needs of a power chair worth the effort? Do you have a manual chair which will be as comfortable and functional? Only you can decide.

You may prefer a trip with minimal travel. Cruise ships, which are becoming increasingly accessible, might be an ideal solution. Once you are settled in and set up, the experience can be akin to a high class floating hotel -- complete with plenty of food and on-board entertainment for all age groups.

If it’s specially organized group opportunities that you have in mind, day and overnight trips, or residential programs such as camps, can be found in most provinces.

In the United States, there are camps and programs for children who use ventilators. If you’ve always dreamed of taking your child with a disability and the rest of your family to Disneyland, there are even foundations that can help by providing the resources needed, including assistance with travel and accommodation.

My first trip with technology in tow -- a wheelchair (manual) and ventilator (used only at night) -- was to Barbados. This was in 1966, long before workers worried about back injuries, and years before policies and procedures for handling "the disabled" existed. In those days, a handsome pilot literally lifted you from your wheelchair and carried you up the gangway as your wheelchair was folded and stowed below with the luggage.

In Barbados, the soft, tropical air, turquoise colour and scent of the sea, local people and relaxed way of life just whetted the appetite for more. In spite of a wheelchair, a ventilator, extra luggage and personal support needs, I knew the world was waiting to be explored!

Check the local electricity before you go.
This includes the voltage, the amps, the watts, the cycles, the wall outlets, etc. On that first trip, I quickly learned the importance of research and planning.

In Barbados, the electrical cycle was 50, rather than 60. My ventilator would not work properly. For a few anxious hours, an early return home seemed eminent. Fortunately, a retired family friend generously loaned a generator from his illicit moonshine operation, and I was able to stay as planned.

Know the local resources. Be adaptable and creative in solving problems.
I have travelled to many destinations since then: to England, Scotland, Wales, Majorca, Sweden, Munich, Austria, the Netherlands and throughout the United States and Canada. I’ve roughed it in ancient cottages with old-fashioned wiring, travelled on narrow-gauge steam trains, explored damp, dripping mines deep in the Welsh mountains, bunked on a narrow bench in a "narrowboat" on ancient British canals, camped in the woods, and silently sailed, "awestruck," for a week on the deck of a 100-year-old, two-masted schooner in Holland.

As you might expect, many trips have required some creative problem solving, like extra-long extension cords connected together through the trees at campsites, or using books, stacked one at a time under each cheek, to raise oneself from floor mattress to wheelchair height.

When visiting England, I have always left my power chair at home. The problem of "different" electricity has been solved by borrowing a British ventilator from St. Thomas’ Hospital.

One summer, my friends and I spent a week on a British canal boat (with no electricity). We installed a gas generator at the back of the boat and ran an extension cord along the 70-foot side and in through the tiny window where I slept. Imagine opening your eyes to a glorious dawn, moored by a peaceful field in the middle of nowhere -- face to face with 50 silent cows, all collectively chewing their cud as they contemplated the source of your noisy intrusion. That was a week to remember!

Ensure you have access to an alternate power source, such as a battery.
Travel is exciting and rewarding, but you must be prepared for the unexpected. Technology depends on electricity, and it may not be reliable, particularly in less developed regions.

In Majorca, Spain, for example, a battery was needed to operate the ventilator because of frequent blackouts. In Holland, when sailing on the 100-year-old Dutch schooner, electricity was not available at night (even though I had carefully written in advance and had been assured there would be no problem). Fortunately, the crew adapted their wiring and set up an emergency generator for use during the night. My power wheelchair could only be charged during the day -- not a problem during sailing days, but a bit of a juggling act when we spent entire days exploring historic port towns.

Take back-up equipment.
Never let essential equipment, such as a ventilator, be separated from you. Take a letter stating that essential equipment must stay with you and attesting to your competence in using it, as well as your fitness to travel.

If you take a power wheelchair, also take a manual. This will enable you to get around somehow in the event of breakdown (which always seem to occur on holiday weekends when repair shops are closed!).

If you’re dependent on a ventilator, a backup is a must. Once, my suitcase containing the ventilator circuit was stolen at Vancouver International Airport. On another occasion, when returning to England from Majorca, the airline mistakenly sent both my wheelchair and ventilator to Zurich. The ground crew panicked, but I was calm. I had a back-up ventilator and also knew of the local resources, should help be required. Since then, I’ve insisted my respiratory equipment accompany me in the cabin at all times.

It’s also a good idea to carry a letter from a "recognized" authority such as a health care professional, just in case your request isn’t listened to or taken seriously.

Security personnel at airports are justifiably nervous about equipment they have never seen. Only once, in Munich, Germany, was I nearly refused clearance. The situation was understandable because the passenger just ahead of me was trying to carry a chainsaw onto the airplane in his hand luggage!

Allow enough time for officials to be satisfied and comfortable. At least an extra half-hour will be required for pre-boarding. It helps if you are familiar with airport procedures and policies. Ask people who have travelled who have similar needs, or check with the airlines before you arrive.

Take a travel kit to adapt the environment to your needs.
The more you travel, the more skilful you will become at planning and preparing. You’ll find yourself taking more and more bits and pieces for all kinds of possibilities.

You’ll probably assemble a travel kit of useful things such as small tools, extension cords, a surge-protected power bar and a "cheater plug," which enables you to put a three-pronged plug into a two-hole outlet. (Many cottages and old buildings have non-grounded, two-holed outlets.) These "cheater plugs" are not approved in Canada, but can be purchased in the United States. You might also include gaffer, duct or masking tape, string and safety pins.

Adapters will be needed for electrical outlets in other countries. A transformer is needed to convert the electricity of another country to that required by your battery charger, ventilator or other technology which is dependent on electricity. Before you travel to another country, consult an electrical expert to ensure you have the right conversion equipment. Also, be sure to take extra supplies and a repair kit in case something gets damaged or lost.

Protect your equipment. Know your equipment settings and operation.
You’ll also become more efficient at packing and protecting your equipment. Taking the footplates off your wheelchair and taping them to the seat is a good way to make your chair’s overall dimensions smaller and to prevent the wheelchair frame from jamming if attempts are made to fold it improperly. Ensure that electrical connections are protected and secured with tape. You might also want to secure the charger firmly to the chair so it cannot be separated or damaged.

Know how to connect and disconnect cables and cords. You cannot always count on airline personnel to know how to set your equipment up again, or even to be available to assist you. Every airport is different.

A modified luggage dolly with bungee cords is useful for trundling heavy equipment, such as suitcases, battery charger and ventilator, through airports or over long distances. I’ve designed a sturdy canvas carrying case with sufficient space and pockets on the sides to pack soft, protective towels, pads or clothes around the ventilator. The case is easy to zip open for airport inspections and even for use during transit.

Equipment connections can loosen, circuit breakers pop out and knobs can get changed with equipment handling. Know your own setup, and be able to do some basic problem solving.

Know your travelling companions.
Regardless of the equipment you take or your disability-related needs, a successful trip will ultimately depend on compatibility between yourself and the people you go with. Whether it’s family, friends or paid assistants, you must feel comfortable and secure with each other before venturing out.

Do a 48-hour dry run together before you leave. Spending continuous time together can be tough, even for the best of friends or the closest family members. Unfamiliar environments, handling luggage, dealing with unexpected situations over which you have little control, all can cause stress and fatigue. You can’t be as independent as you are at home.

Some people avoid this extra stress by travelling with an organized group in which luggage is handled by others and routes and accommodations are well researched for convenience and accessibility before the trip begins.

Know yourself.
Before you decide where to go or how you’ll get there, you need to ask yourself some questions. What kind of trip do you want? A trip that’s energetic and full of adventure, or one that just involves getting there and relaxing? Are you the kind of person who can roll with the punches? Are you a planner -- a levelheaded, flexible, responsible kind of person who can solve problems in a practical way if they occur? Can you adjust to circumstances with humour and an ability to tell a good tale afterwards? If the answer is yes, then go for it!

It could be a trip to the next town, to a camp or to the other side of the world. Doesn’t matter. The sights and sounds, photos and long-lasting memories from being in another place will stay with you through even the bleakest winter. It begins with a dream and a plan.

(Audrey King is a freelance writer living in Toronto, Ontario.)


RESOURCES:

Getting Started
There are lots of books, magazines, newsletters, guides and videos on travelling with a disability. There are also many experienced travellers with disabilities who are willing to share their ideas and advice.

It’s impossible to list all the resources. But an excellent way to begin is to search "disability" and "travel" on the Internet. If you don’t have access to the Internet, here are a few contact points you might want to start with:

INTERNATIONAL AND GENERAL INFORMATION:
- Society for the Advancement of Travel for the Handicapped (SATH), (212) 447-7284.
- Mobility International USA, (541) 252-3104.

CANADIAN AND PROVINCIAL INFORMATION:
- Easter Seals/March of Dimes National Council, (416) 932-8382 (ask for Heather Stonehouse).

ONTARIO:
- The Ontario March of Dimes, (416) 425-3463 or 1-800-263-3463, ext. 288 (ask for Cathy Smart).

CHILDREN AND YOUTH IN ONTARIO:
The Easter Seal Society (Ontario), (416) 421-8377, ext.327 (ask for Barb Hnatiuk).

QUEBEC / COSTA RICA:
- Keroul: Tourism for People with Restricted Physical Ability, (514) 252-3104.

VENTILATOR USERS:
- International Ventilator Users Network (IVUN), (714) 761-4503 or (314) 534-0475.

ALTERNATIVE COMMUNICATION USERS:
- International Society for Augmentative and Alternative Communication (ISSAC), (416) 385-0351.