Monday, August 06, 2007

Guest Blogger Linda on "The 'almost accessible' vacation.

Linda, my partner, wrote this post about her viewpoint on holiday trips and accessibility:

We were in desperate need of a vacation. It had been a rough four months watching my partner’s health deteriorate. We were at the point where her weakness, pain, tiredness, the use of oxygen and a wheelchair was the new norm. We needed a change of scene, away from the daily doctor’s appointments, if only for a few days. But where to go? We found an ad in the paper for a spa and lodge up-island that was offering an early bird/off season rate with lots of free extras. Those deals are my kind of vacation. I started planning the trip.

I thought it was an ideal vacation spot – no need to hassle with extra health insurance had we gone to the US and no need to get approval from an airline to take oxygen onboard. The freebies really attracted me – a zodiac ride to see sea lions and eagles, free kayak rentals and a foot soak at the spa. I love sealife and had toyed with the idea of kayaking for over a year.

What I soon realized was that this vacation would be unlike others as I needed to shoulder more responsibility. Previously we always planned things together and we each had tasks to do to make the vacation a reality. As Beth’s deterioration was so new, we were still trying to find limits on what she could manage without paying for it for days after. At the time, it didn’t seem like there was much she was able to do. So it fell on me to do all the packing, making sure we had all the necessary medical equipment such as oxygen and medication.

I needed to rent a car that would hold the wheelchair. I thought a full-size car would do it. The chair didn’t quite fit as is, so I had to take off the wheels and reassemble the chair every time Beth got in and out of the car. Plus we were still waiting for her lightweight chair and using an older heavier “loaner” wheelchair. Maybe next time I’ll get a van! I also needed to load and unload the baggage from the car and do all the driving. Even though Beth has a driver’s license, the sensation in her feet was fading and her sudden passing out due to lack of oxygen was increasing. Not what you want to happen while driving a vehicle at 100km/hour. In the past, packing and driving were shared responsibilities. Things were different now – more complicated – we needed more rest breaks for us to stretch and they had to have accessible toilets. On the way up, Beth was inspired to ask me to turn into a small regional airport. She hoped it had an accessible toilet and it not only had an empty and accessible toilet but a disabled parking spot 15 feet from the door. Who would have thought to go to the airport for a toilet?

We arrived at the lodge in good time. When planning our trip I had called the lodge to see if they were wheelchair accessible. There is no disability act in Canada and many restaurants and hotels in Canada are not accessible. I found this out a few weeks previously when I had to call about 15 restaurants before I found one where we could actually eat. When I called the lodge I was told that it was ‘almost’ accessible – there were a couple of steps to the spa and a couple more to the dock. I thought Beth and I could manage that…somehow (although I confess I don’t remember asking her as I was in love with idea of that zodiac ride and I didn’t want to be dissuaded).

‘Almost’ was the word that would haunt us all weekend. The architects of the complex must have thought steps created character because there were steps everywhere. Even our ‘accessible’ room had 5 steps down once entering the front door. Fortunately we switched for an empty room which had an pathway accessible back deck with a ramp. Inside this new room we found wheelchair bars in the wheelchair sized bathroom. An odd surprise as when I called to book I was told there were no “designated” wheelchair rooms.

The restaurant was 3 steps down from the main lobby, the pool area was 2 artistically curved steps up from the path (It was the stupid curves which stopped us from being able to easily use a wheelie to get up them). The spa was a boat ride away. To reach the boat there were approximately 20 stairs or a very steep hill which couldn’t be navigated alone. Then the floating dock itself was at a 25-45 degree angle depending on the tide. Somehow we never got to use it at high tide. We had to do a transfer from the chair onto the edge of the boat, from the boat edge back into the wheelchair (on the boat back deck) and from the wheelchair down the step into the secure seats of the boat then all over again on the other side of the bay. Oh, and that spa… it was located past one hill, 30 feet of soft gravel, and then five curvy steps and wicker mats to navigate. ‘Almost’ accessible?!

The staff was nice in the vague way which doesn’t offer any solutions. If we wanted to partake in the activities we had to find our own solutions. And we did. I was determined to go to the spa, the restaurant and that zodiac ride to see the sea lions basking on the rocks. Beth sure paid for it – needing oxygen after each boat transfer, suffering a few spills wheeling over rough terrain and the resulting trauma to her body which caused pain and tiredness. I paid too, as I needed to pick up the pieces. I had a sore back from helping with the awkward transfers (still hadn’t figured out how best to transfer), I had to drive into town for take out dinners that we could eat in our room while resting in bed. And then there was the worry and the guilt – would we have enough oxygen to last the trip? We had been using more than usual. Where was the nearest hospital? Was it my fault she was so exhausted because I dragged her to do the able-bodied activities?

I quickly learned that even on an “all inclusive vacation,” I was the only person who would step in and ensure Beth’s health or comfort. For example, in taking the wilderness zodiac ride we found that zipping around at 50mph is really great (and I do have some good memories of the eagles and sea lions) but it is also very tiring for someone who has to struggle to stay upright. By the time we arrived back at the dock Beth couldn’t move and had trouble breathing. Carried off the boat she went into shock and her body started trembling uncontrollably.

After a few moments I realized that while there were four staff workers standing around the dock, none of them really knew what to do. While I was holding onto Beth’s hand and talking to her, I also had to make ‘suggestions’ to the staff to help stabilize Beth. Twenty minutes later, when the shaking had stopped, we transferred her to the chair. The staff helped me push the chair up the dock ramp but then they decided their job was over. It was left to me to get her up the intensely steep hill, around the pathways, into the room, and transferred to the bed all by myself. This might have been when I strained my back. Luckily, I was always too busy managing the staff and reading Beth’s body to feel worried or alone.

Our worst part of the trip was the solo kayak excursion. Beth was not allowed to go on the kayak, but she still encouraged me to go on my own. She was told she could go to the library and surf the net while I was gone. Unknown to me, when Beth arrived at the library, she encountered a dozen stairs. A member of staff moved her wheelchair to the upper level while Beth crawled up the stairs to reach the computer. The staff member then disappeared. Meanwhile, I was a solitary 30-minute paddle away from shore when the weather turned. The wind picked up, the clouds grew stormy and thunder rolled in the distance. ‘Surely the staff would bring a powerboat and get me off the water before lightening strikes’, I thought. But they didn’t. ‘Beth will see the stormy weather and alert their attention,’ I hoped. But still no one came. I was on my own and Beth wouldn’t be able to get me out of my physical problem – which she often did in the past when she was able-bodied. I really had to battle waves, wind and fear in order to make it back to shore. I finally made it only to find the staff hadn’t even noticed I had arrived.

When I found Beth in the library I broke down as I recounted my experience. It made me feel better so say how scared I was. Unfortunately, it made her feel helpless that she wasn’t there for me. While I was trapped on the water, she had been trapped in the library. Until someone came there was no way for her to get herself and her wheelchair down the stairs. We were both fed up with having to fight every step of the way in order to have a ‘normal’ vacation. We just wanted to get back to our room and crawl under the covers and lick our wounds. But of course, nothing is ever simple when you have a disability. We were beaten down and we still had 30 minutes of grueling work ahead of us. Before we could reach our room we had to go down one dock, transfer onto the boat, traverse the bay, transfer off the boat, go up a very steep dock, up the steep pathway, through the parking lot and around the building to our deck.

A long nap will do wonders for the body and soul. Once we woke up we decided we would do what we could to salvage our vacation. One thing was to stop doing stuff that would wear us out. No more boat trips, that’s for sure. A dip in the hot tub we could manage. As well as watching movies in our room.

From this vacation we learned ‘almost accessible’ isn’t quite good enough. Not if we want a vacation both of us can enjoy. For our next road trip we bought a book that outlined all the accessible restaurants, toilets, parks and sights in the area we were visiting. I found that it is possible to go on a vacation when you have a disability or are traveling with someone who does. I also found out that Beth’s limitations were not the only consideration in holiday planning; my limitations and needs were just as important. And those limitations and needs had changed along with Beth’s health. So yes, it takes extra planning and things aren’t quite as spur of the moment as they used to be. Sometimes it feels more like planning a military exercise than a vacation. I now realize that a vacation is doable but not always what I might hope it to be. The two of us can still have great adventures together.


GayProf said...

Oooh -- I love guest bloggers. It reminds me of the old Carson days.

Probably vacationing will get easier the more the two of you learn all the ins and outs of your new circumstances (Next time, for instance, the van will probably be your first choice). In the meantime, at least you did get away for a bit.

kathz said...

I hope there are some good memories as well as justified anger at the lack of help and support. I find it surprising that Canada doesn't have the kind of legislation on access, etc. that we have in the U.K. It's not brilliant here since the government makes rules but doesn't provide all the supporting funds needed. (This means that university staff, for instance, can't do all they want because of the number of students for whom they're responsible. The first response seems to be sending a memo to staff or insisting that everyone goes on a training course - support staff and equipment take much longer to arrange). But it's forcing everyone to re-evaluate access and procedures and wheelchair accessibility seems to be improving. The starting point here is that people with disabilities should have access unless there's a very good reason against.

KateJ said...

Good to hear from you Linda! Sounds like you made the best out of a fairly nightmarish situation. I agree with Kath, surprise at the lack of disability/accessibility laws in Canada, BUT we only got them in UK after years of concerted lobbying, direct action and a few very, VERY determined individuals. And even with all that, it's more tokenism that anything else. I'm not disabled but have a number of disabled friends, who have told me that public transport, for instance, is much worse for disabled people here than in Canada.
And even where something does exist - like designated parking spaces - it is abused. Last week I was parked outside a mainline rail station, there was one disabled space, occupied by a car without any kind of sticker. I watched the people come back to the car and I'd be very surprised if any of them had any kind of disability. People just don't take it seriously.
Good luck with your efforts.

Steve F. said...

What the hell ever happened to "truth in advertising"?

I recognize that I know next to nothing about wheelchair life, or any of the other things you're struggling with. But I'm at least knowledgeable enough to know that "a few stairs" are not "almost accessible." That just sucks...

I think that, as punishment, people who mis-speak about accessibility should be chained to wheelchairs and made to maneuver around said location - solo - and not fed or watered for 3 days unless they can get to it themselves.

Then, after they get out of the hospital, rehydrated, cleaned-up, etc., they should be given a chance to publicly apologize to everyone they've steered wrong about the accessibility of said site.

Preferably from pillories or stocks.

The fact that you aren't a raving axe-murderer after what you go through daily is proof of the existence of a Higher Power. Thank God for Linda, and her endurance - and for yours, Beth.

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Andrea said...

Re Canada's lack of legislation:

The US disability community had to lobby hard for the Americans with Disability Act to be passed in 1990 (and other accessibility and human rights laws). And then the courts went and undermined critical parts of the ADA by near deliberately misinterpreting the intent and spirit of the ADA. So now we are fighting AGAIN for yet another piece of legislation, the ADA Restoration Act of 2007, that is meant to reverse that damage.

I've been blogging about that at