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474, Montreux

From the boardwalk along Lake Geneva in Montreux.

I don’t seem to take the standard tourist photos when I travel. Then I get home and wish I had. The boardwalk was a crazy open-air market, all kinds of people and vendors. It was a treat to come from my tiny world of small-town America into an international throng in Switzerland. I didn’t do a very good job of managing street photography from a wheelchair. Next time.

Look for me on Instagram: @harvinstephis

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Over Lake Geneva, Montreux, Switzerland 2012

A once in lifetime (or twice if my ship comes in) trip. Beautiful location, heroic support team, amazing music, brilliantly accessible venue. No smoke on the water. There’s a story here, I’ll get to it one day…

Doing the Insurance Dance

Inspired by Mitch over at Enjoying The Ride, here’s my crazy insurance story. Granted, this is a completely “first world problem,” but I was surprised (though maybe I shouldn’t have been?) by the tom-foolery.

I’d been struggling to drive my wheelchair around the house. The chair was, as I have since discovered, essentially a fancy transport chair. As much as I loved it, and as well as it served me (making several trips to Florida and one to Switzerland, and countless excursions into Portland), it was always a bear to self-propel. I ended up with constant pain in my shoulders and elbows. My neurologist wrote me a prescription for a power chair. I found this one, which I liked because it could be broken down and loaded into the back of my wife’s Subaru, allowing me power-chair-access to the wider world. (The fact that it didn’t end up filling that expectation very well is beside the point.) When I first approached Anthem for a pre-approval, I blithely told them I wanted this particular chair because it was reasonably portable, and would allow me that out-and-about freedom. The person I spoke with told me, flatly, that they only covered powered vehicles for inside the house, that getting out was not a considereation for them. I argued that quality of life was a health concern (wasn’t it?), and was told that no, it wasn’t, at least not for them. I was livid and confused.

Fast forward a month or so. My local supplier, Black Bear Medical, came up with a new insurance number, and I resubmitted the claim. The only difference was this time, I did not volunteer any information about why I wanted this particular chair – they didn’t ask, and I didn’t tell. Bingo! Chair purchase approved. The exact same chair that they had denied only a month before suddenly was now acceptable. Apparently, “don’t ask, don’t tell,” applies to more than just sexuality in the military.

I went back to Black Bear a year or so ago, shopping for a scooter, for which I also had a prescription from my neurologist. I mentioned the previous power chair coverage issue with the salesman at Black Bear, and asked him if would have the same issue with the scooter. He shook his head with a rueful smile and said that this was a game that the insurance companies played. In the case of the scooter, all parties involved knew full well that this was not an item one purchased for use around the home, but that the same “don’t ask don’t tell,” game applied here. They would most likely cover the purchase of a scooter without flinching as long as I made no mention of the fact that I wanted it for use outside my home. Chances are they would not ask, even though they knew as well as I did this was what it would be for.

As it turns out, I did not purchase the scooter. But I am looking at an accessory drive system to add to my new wheelchair (which Medicare paid almost all of), which, according to the information I’ve seen online about this item, would vastly improve the drivability of my new chair and alleviate shoulder, back , elbow, wrist and muscle fatigue issues. Their website also talks about their products being at least partially covered by Medicare. My next step is to extract prescriptions from my physical therapist and my neurologist that this accessory is medically necessary. And then, I can hold my breath and dive back into the deep dark depths of the insurance claim industry, and see what happens.

Either that, or it’s Go Fund Me time.

Hey! It’s me down here!

It is hard to find steeze when you’re in a wheelchair. It’s even hard to get noticed, as anyone who has tried to navigate through a crowd – or even just a busy sidewalk – in a wheelchair will tell you. I don’t know what it is, how people can’t notice a wheelchair.

There is an organization that operates during the Montreux Jazz Festival (and perhaps elsewhere) called “FreeArts,” that provides wheelchaired concert patrons assisted access. A volunteer “guide,” is assigned to help navigate the crowds and get the patron to his/her seat. Even with the most aggressive assitant pushing my wheelchair through the throngs – literally shoving people aside, as if there was a medical emergency – people still seemed almost not to notice me. Free Arts is a great model for public events everywhere, a way to encourage handicapped people to get out and about, people who might otherwise be reluctant to venture into a crowd.

There is a strange reluctance to step aside. Perhaps they don’t realize that a person in a wheelchair is far less manouverable than a person on two legs. I am reminded of the book, “Waist High in the World,” by Nancy Mairs. Whatever the reason, there are ways to get noticed, short of just ramming through the crowd with a stick, other people’s knees and ankles be damned.

There’s the Action Track Chair, which looks a bit extreme (and probably is not suitable for concert-going) but for those of us who used to love being out in the woods or other rough terrain, the Action Track begins to look very reasonable.

At the other end of the spectrum – less extreme but no less noticeable – is this custom-built Who Dat Cadillac scooter, designed by a custom motorcycle shop in New Orleans for a handicapped man who was tired of his style – his steeze – being cramped by what he calls “corporate wheelchairs,” and inspired by the former Saint’s player Steve Gleason, who is fighting a very public battle with ALS. Scott Songy, the Cadillac’s designer, is donating the scooter to Team Gleason, a foundation started to raise ALS awareness and funding for research.

At the very least, a flag might help. I want a pirate flag for my chair. Maybe that’ll scare ’em off!

montreux by wheelchair

it’s not that i don’t have anything to say, it’s just that i never seem to be ready to say it when i’m at the keyboard. but here’s something.

i am planning a trip for this coming july with my wife, her sister, and my brother-in-law – all good traveling companions. we are heading, sort of on a whim, to montreux, switzerland, home of the world-famous jazz festival. when i was 8, my family lived in lausanne – right around the corner – for a few months, and i have always wanted to go back. but, since i was only 8, there is little of that city i would remember. so we chose montreux (remember “smoke on the water?” on dec. 4, 1971 at the montreux casino, deep purple was doing some recording in the rolling stones mobile studio, and while frank zappa was performing in the theater, someone fired off a flare gun, and the hotel burned to the ground.)

anywho, we rented a flat, seen only via the internets and google maps street view, after extensive searching for accommodations that would accommodate me in my wheelchair. no stairs, etc., you know the drill. my brother-in-law dan finally found us one, and from all we can see, it looks great – view of the lake, close to the concert venues, etc. i will admit to a little anxiety about some of the practicalities. like grab-bars in the bathroom (of which i am sure there are none), and the wheelchair-ability of the surrounding neighborhood. it has proven very difficult to get any detailed information.

what little i have found is encouraging, though. apparently, the public transport is very good, trains going everywhere and all wheelchair accessible. i’ve heard several reports that the sidewalks are generally in good repair. the jazz festival itself is very handicap-friendly, with special seating areas, and offering me a discounted ticket and my “companion,” (which they will provide if need be) a free ticket, though bars and restaurants seem to be catch-as-catch-can. there are special handicapped public restrooms, available only to those with a special key. all good signs.

there is still a bit of the fear of the unknown, of being so far from home, being disabled, and having very little idea of what to expect. my posse for this trip (we four have traveled to scotland before) are all good sports, and understand my limitations. my friend kathi thinks me very brave, saying that i travel farther and wider than she does. i go back and forth between feeling brave and feeling a little foolish, sometimes a little of both.

but we put money down on the flat, and bought our (VERY!) expensive airplane tickets. so come july, off we’ll go. for better or worse. the jazz festival does not release it’s schedule until the middle of april, so we have no idea who we’ll find performing there. i am putting together my own wish list in my head, though i think i’ll probably be very happy just to be there, regardless.