	October 1997

My Travels with Deena

Mary Brady
editor; Tapping Technology

First off, let me say that I've always liked Jewish women from New York.. They're mouthy, they're liberal, they're fun. Put three of them together with three Irishmen from Baltimore, hon, and what do you have? An Irish stew that's good for you, so eat it already!

Tapping Technology's editor recently had the chance to spend six glorious days, five fun-filled nights aboard the largest, most luxurious, most historic, most certainly-not-we're-British transatlantic passenger ship in the world, the Queen Elizabeth 2.

It was the Queen Elizabeth 2's ("QE2" to her friends) second-ever cruise to the Newport Jazz Festival. It was the author's third trip on the Queen, but her first one with ATOB(Assistive Technology On Board). One of our intrepid group had broken her foot a couple of months ago, and still didn't have a walking cast on. One of us had MS and used a cane. One of us was a rehab specialist, and brought a wheelchair along. (This one thought she knew what she was doing with AT, but more about that later...) One was 75, and holding. Two were TABs (temporarily able-bodied). But, they drank, thus negating any overabundance of locomotion or elocution...

Our average age was 53.5, a little lower than the ship as a whole. One member of our group felt that we were obsessed with that topic. So, we switched to discussing religion and sex. It was only a five day cruise, so we skipped politics. Boy, did we have fun!

Accessible is not a term that should be applied lightly. In it's best commercial usage, it might refer to a combination of architectural compliance, appropriately installed equipment , thoughtful and concise communication with customers, and courteously offered services. Given that definition, one might say that the QE2 was quite accessible. The area in which she shone was in the individual attitudes of the young and international staff. Passengers were a rather more mixed bag of awareness, helpfulness, rudeness, and the usual misguided but well-intentioned pat on the head. (While the rehab specialist was practicing wheelies in the Passenger Ship Terminal, a fellow passenger offered her a chocolate, "for energy". He made no similar offer to her TAB companion. Ed. note: she did accept and wolf the chocolate down...)

There were, by casual count, at least a half dozen chair-using passengers aboard, another two dozen with canes. There were lots of folks who'd reached their golden years, a few of us in our prime, and a handful of kids. In all, there were 1,500 passengers and 1,000 crew members resident in this beautiful floating hotel.

It takes one gallon of diesel fuel to move the QE2 52 feet. It takes 125,000 Horse Power to slide the QE2 through the Atlantic. It takes about $20 worth of lumber and a couple of hours of a skilled carpenter's time to hammer together and install a ramp. But... only the port side (for you landlubbers, that roughly translates to "left", looking to the front of the ship) was ramped, and those that existed were far from the 12:1 incline ratio. The ADA, like other annoying American laws, is circumvented successfully by this ship of British registry, by making sure that all sea voyages originating and ending in the New York port include at least one stop on foreign, (in this case, Canadian) shores. No U.S. registry, no ADA. No hour/wage laws, no minimum wage... you get the picture. There were several accessible bathrooms, complete with emergency signaling systems, captioning on some TV programs, and the crew seemed sensitive to disability issues.

Deena's article elsewhere in this issue covers some of the practical suggestions she has for the QE2. As one of the TABs aboard, and a person who has been working in the rehab/advocacy/AT world and thinking about such things for about the last 20 years, the author made the following observations:

Most of us who work in rehab think that we're going to be fabulous old folks, because we're already technology-friendly and street-smart with such issues as independent care, disability rights, the health care system, ADA, etc. etc. etc. Oh, really?

D.

Watching a noble friend deal with a temporary disability was enlightening. We christened her "The Brave Deena" at our last dinner aboard in the Mauritania Dining Room, and we were teasing, but actually sincere. Having fought the good fight for disability rights in countless parking garages, at the bottom of countless flights of steps, in countless freight elevators, and in innumerable bathrooms, classrooms and escalators, I found it hard to just take "no" for an answer without becoming confrontational, at least inwardly, and sometimes outwardly. Deena, however, was also fighting embarrassment, frustration, feelings of dependency, physical fatigue and a really lousy hospital-style wheelchair that didn't fit her. Further, she had been given no more than a "here's the crutches, good luck!" from her HMO - no PT, no OT, no AT. In other words, very little to prepare her for coping with immobility at home or abroad.

Beyond the usual elements of mobility and independence that have become commonplace to we "rehab professionals", however, Deena did have numerous advantages that allowed her to deal with a difficult situation with grace and humor.

A great attitude. If she had thought about canceling the trip, it wasn't for long, and she didn't. I respected that.
Good support group: friends who were not overly wary of the situation, or overly helpful. We were pretty cool.
Patience. I heard the words: "It's not worth it." a few times more than I'm used to hearing when facing access issues, but, in general, Deena was game if it could be done without too much danger to her or to others. If not, she put up and shut up. I heard no whining.
Personality. Deena used the opportunity of being disabled to connect with others who felt safe to approach her with offers of assistance, concern, or "me, too" stories. We met some pretty interesting people this way.

What did we all learn from this experience? As a rehab professional, I'm probably going to make a lousy, mad, frustrated old and/or disabled person - because I'm starting from a different perspective of knowing my rights and the expecting to take advantage of the possibilities offered by technologies, architectural accommodations, etc. Just as doctors and nurses make the worst patients, I think rehab technologists will probably make the worst end-users. We'll be too busy critiquing the products and services....

What it boils down to is this: disabled, able, or temporarily in the shop for repairs, it seems we all need to follow the advice of this maritime maxim I learned from a very young and vivacious lady aboard the QE2:

"Pas d'elle yeux rhône que nous."

Say it out loud; it won't make any sense the first few times, but if you practice it or show it to a Frenchman, you'll learn a great truth about what we must all learn to do in life.

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