An App for That?

This wide and wonderful planet is not as handicapped accessible as it could be. Which leads to all sorts of conundrums for travelers who are in wheelchairs, or on crutches, or who just have to pee—now.

Is there an app for locating free, clean, accessible bathrooms? I want one. Until that day, I will simply follow the Golden Arches.  Gas station restrooms can be dicey. Highway rest areas are, in my mind, the pinnacle of civilization, but are prone to closure during state budget cuts. Which bring me back to McDonald’s. Again, and again, and again. Specials shout outs to the McDonald’s by the Arc de Triomphe and the McDonald’s in Waimea. Home is where they have to let you in.

I have another request of the App Gods. I want an interactive, updatable app to alert travelers with disabilities of situations like this:

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I was shocked, as was the lady in the photo above, to see that the elevator was out at the Metro Station at the NIH (National Institutes of Health), of all places. We’d been lulled into the feeling that we’d reached Oz and all of our problems were about to be solved. And now this. While believe I pointed the young woman in the direction of a working elevator, that could have been wishful thinking. The sun had just burst out from under a cloud, raising my body temperature, frying my neurological wires. So I was distracted. I had to pee. But in my distraction, I did wonder: why couldn’t Google Maps have a little alert that the elevator was out, saving this lady the effort it took to get here…and a little flag indicating the location of the next closest elevator? And that’s when my app idea was conceived. It’s still not fully formed.

Is this app a layer on existing apps that a disabled user can opt into?

Or is this a separate app? I know I love to read blogs about other people’s (mis)adventures traveling with MS, like the Xanax tinged travails of MSGracefulNot.   Wouldn’t it be nice if all the testimonials were in one place? That’s what the fine blog The MS Wire has attempted to do. Ed Tobias has compiled travel tips from his years of adventures, and has invited his readers to do the same. He’s started with some practical tips about traveling New York, with the hope of adding more cities in the future. It would be great to have folks check in from Ontario and Topeka or their own home town, with their praises of well tended sidewalks and/or their condemnations of doors within hospitals that can’t be opened without buttons. (Major pet peeve!) It would be great, on entering a new city, to have the dirt on the dirty bathrooms (I know, I know, I’m obsessed with bathrooms) and broken elevators from people who get it. It would be great to have travel anxieties dispelled by the knowledge that our peers have our backs.

Thank you for reading!

If you haven’t already, consider voting for my blog at the WEGOHealthAwards.

I

 

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TRAP (part 2 of Ms. Lab Rat’s Latest NIH adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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