The Parking Placard (Black n') Blues

How I Learned to Stop Worrying and Love the ADA, Which Just Turned 32

It’s an epiphany when you realize for the first time that the white stick-figure on the blue parking sign is you. That's you. Now you can park in that fat sirloin of a spot. Now you are “the disabled.”

For me, this leap to disabilityhood was as every bit as much a mental process as a physical one. And I fought the knowledge, down the line, tooth and nail. I always did, with every new adaptation or assistive device, fight, fight, fight. To some that sounds courageous, but really it’s ridiculous. But I was young, I was always healthy, and I was a guy. I didn't need no parking placard: that's for other people. I didn't need nothing. 

I had a thick head. 

Something new, something blue.

So what changed my mind? I can’t remember the moment I decided to pick up a disability parking application. It must have been some watershed event, perhaps my 1,000th fall, the one that rattles your very teeth. Falling itself was no big deal, and I might do it a half dozen times in a day. After a while, my body looked like Keith Richards’ after a bender, but cry-cry, I dusted myself off and got back in the game – because you've got to, nobody's going to pay your way. But maybe that 1,000th time was the one to slosh my brain in its comfy bath of cerebrospinal fluid: Wake up, you green-gray piece of fat!

I used a walker then. An aluminum walker, to go along with my biker jacket. I would drag the thing to the grocery store for a few items, forgetting half of them by the time I reached the aisles. No browsing, no price-shopping, I just toppled things into the basket, teetering in the checkout while I fished for money, and dragging my Frankenstein feet out to the parking lot again, cars politely navigating around me - although the occasional Einstein would honk, not that I could turn around to see him, not that I could reach around to flick him off.

Muh sexy ride.

As my legs exhausted themselves, each step became smaller, smaller, until my energy was drained and my limbs locked like jointless boards due to muscle tone. In the middle of the parking lot, I stood stock still, like performance art, like the Tin Woodsman in the days before Dorothy Gale. 

To make things a little easier, the walker had wheels on the front legs so I could shove it along instead of lifting and planting it on every step. But once fatigued, I lost the power to hold the walker in place, and the wheels assumed a more insidious role, creeping forward slowly. As they gained momentum, I thought, No, no, this can't be happening. Unable to lift my feet, my upright posture deteriorated into a wider and wider triangle as the walker rolled further away. As my angle increased, I could hear Carly Simon singing “Anticipation.” I couldn’t let go to break my fall - my hands were locked - so I'd take a deep breath and bail, turning my face as best I could, because I don’t need to be any uglier.

On the way down, I’d think: Don't land on the Chef Boyardee!

This happened once on a frigid winter night, after my friend and I had attended a wake and on the way home, stopped for a nightcap. The parking lot was a thin, solid sheet of ice. I straggled back to my car, up a slight incline of drainage built into the black asphalt. Along the way I had to stop and rest, talking to my patiently shivering friend while we waited for my chilly legs to unlock.

I detected motion. Yep, I was sliding backward over the ice, in the direction of the drain. I was unable to move or resist; like a Gemini astronaut, I was only along for the ride. At the time I had no idea where I was going: I wasn't even facing the direction I was headed.

My buddy circled nervously around me. “Hey, Fred Astaire, what do I do?”

I was picking up speed. So I had to be honest with the guy. “I got nothing."

Jim dug in behind me to brace me, but honestly, in our leather-soled dress shoes, we might as well have been in ice skates. At this point I think he was pushing back simply to save his own hide. But there was nothing he could do; there was nothing anyone could do. We were a runaway train, and I was taking him down with me.

I sometimes imagine what it was like for someone in the warm comfort of their car to watch us gliiiide across that parking lot. Floating, gracefully rotating in space. Maybe the Blue Danube Waltz was playing on their radio, <CUED UP FOR YOUR LISTENING PLEASURE> 

while we skated from one side of their windshield, all the way across to the other side of the windshield. … Faster and faster… Have you watched curling in the winter Olympics?… 

On and on and on… Circling the drain...

What would become of our intrepid boys?

That’s when I started laughing. In uncontrollable circumstances, laughing is often the best thing to do. In Chicago when freezing your body parts off we often laugh it off with our friends. Because it's better to freeze body parts off together and be laughing, then it is to freeze body parts off and not be laughing. And that's the science behind that.

But also, convulsive laughter is useful in defeating spasticity. In an instant, we were a giggling heap of metal and man sprawled on the dark ice. In our slick shoes, we'd be stranded on that parking lot for some time. For the life of me, I can't figure out how we ever got up again.

Lucky were the times when there was a friend around and frictionless ice to fall on. More often, it was a sidewalk or bathroom or busy street crosswalk, hopefully with one or more gallant onlookers there to drag me out of danger and stuff me in my car. After I’d rebuff their offers for medical help, I would fall asleep on the front seat, sometimes for over an hour, sometimes with the engine running.

Somewhere in there happened magic No. 1000, the one to knock some sense in my noggin, the one to make my broken capillaries cry out, “Get the blue placard, already!”

Before then, I clung to a strange, outmoded idea of what independence is. But once I crossed that thin blue sign, what I found was a fuller independence of accessible jobs, housing, education and protected rights, accessible medicine and tech and yes, even decent curb cutouts and parking spaces - a whole societal push to involve everyone, to bring everybody to the decision-making table, even hardheaded fools who happened to fall upon the right decision one day, after he fell absolutely every other place first.

Viva the ADA.

Three Years Out!

Until that time, we were stuck. Stuck in place, because of my worsening multiple sclerosis. I rely on a Hoyer patient lift that most hotels do not accommodate. (It's a long story and another blog I'll definitely write.) Without reliable places to stay, we stopped even trying to travel.

But we had an idea, and when my wife retired we rolled the dice: We drove across the country to Mesa, Arizona, where we had purchased an accessible RV - over the internet. On that blazing summertime trek, we slept on the floor of our cargo van, convinced that good things lay ahead. There were some crazy, even dangerous, detours along the way, but I'm cutting to the chase here. When at last we arrived and took delivery of the RV, one challenge still remained: whether or not we could actually use it. We knew that the inside of the toy-hauler trailer had an accessible floorplan, but my way in and out would be by going up and down the ramp in back, something I had never actually done. If you don't know what a toy hauler is, it is a trailer to haul smaller vehicles inside, and the rear wall flips completely down into a ramp. A rather steep ramp, but I could do it, theoretically. Now I'd be putting our theory to the test in 107-degree Arizona heat!

Thankfully I passed the test. Even with my head swimming in delirium and my multiple scleroses bubbling inside my skull like a popcorn, I still made it safely to the ground. But no time to celebrate, we had to boogie! We had reservations for the night at our very first campground a couple of hours north of there, at Grand Canyon National Park. After some basic how-to instructions from the dealer, we left and kept our eyes peeled for a large hole in the ground. 

We rolled into the park just before nightfall. That first night was spectacular. We saw the Big Dipper, a shooting star and a satellite passing overhead. Grand Canyon is about the biggest debut a little camper can make, in my book, and knowing the legendary Canyon was out there so nearby in the darkness was a total rush, a childish night-before-Christmas type of excitement. I got my wheelchair stuck in gravel that evening and got a push from a young man from Holland – absolutely a National Parks experience. This camping was OK!

Arches NP.

The wonders did not stop. From there we went to the Arches National Park. Then Mab drove through the Rockies on Interstate 40. Not only were the views stunning to a couple of flatlanders, but she met the challenge of towing through the mountains like a champ. She hardcore. But the highlight of the trip was still to come, seeing my cousin Tina. Growing up we were close, but life goes on and we went apart during our adult lives. In that time she had successfully battled cancer, and we were so excited that she and her wife and son, along with my aunt and uncle (my godparents) came to visit us early one morning at a campground before they all went to work. It was a brief visit but so sweet and touching. It was the last and best part of our exhilarating trip back into the world of travel.

It was about a year later when the cancer came back. That brief, giddy visit, a hurried reunion filled with outsized smiles and enough excited chatter to fill a whole summer's day, turned out to be the last time Tina and I got to see one another. What a gift, and what a great lesson to keep pushing outdoors and keep moving and enjoying the country and its people.

That was three years ago today. There was more to that adventure, some chills and spills to write about later. We were crazy to do it, but we're so glad we did. At times the camper is a whole other set of worries but it's very rewarding. I remember once reading the summary of a medical study pinned on a bulletin board in my first neurologist's office, and seeing the phrase, "Absence of mobility equals morbidity." Stay still for too long and you'll deteriorate, you begin to die. The paper was talking about moving and staying active, but in a similar sense this is where Mab and I are in our lives. The time is right now. The camper, three years ago, was our Declaration of Independence. Now we're leaning into it and pushing hard:

        19 trips, 36 mos., 19 states, 20,170mi.

Here's to the next three years. Look out, we're coming to your town.