Part II – Sight Lines and Choice

The immediate functional downside of paralysis is that you are instantly shorter and wider.

I was six feet two inches tall when I was injured, so was pretty accustomed to having the line of sight I wanted, unless I happened to be behind an NBA team in a crowd.

My wheelchair is twenty four inches wide, probably less by a couple or so than the one I started out in in 1973, but nonetheless, wider at its narrowest than my body.

Not being able to stand in a crowd is really a drag. It happens in lots of places. Parades, sporting events (at the best moments of course; people stand at the high dramatic points of a game), concerts (more on my years with the Grateful Dead in a moment), weddings and Bar/Bat Mitzvahs, and plenty more I’m sure you can think of on your own. The sight lines suck from down here.

Oddly, being tall in a wheelchair has its problems. The supporting plate for my feet needs to clear the ground by at least two inches, so given that plus my long legs, I have trouble getting my knees under a lot of tables, especially people’s dining room tables at home. (I had to make quite a search to finally find a table I loved for home that looked good, too.)

A facepainted Gary Karp at a Grateful Dead concert

The advantage is that there is increasingly better seating for chair users in theaters and sports arenas. The Grateful Dead really did us a big favor, setting up a platform at the back of the floor, above the crowd, dead center on the stage. Best seats in the house!

Being wide comes up all over the place; stores, getting between cars in parking lots, down the aisle in airplanes (not an option, so you have to submit to being strapped into an “aisle chair” and carried in as cargo, almost), and not being able to get to the best table in the house at a restaurant because, once people are in their chairs, there isn’t usually enough space to pass between their backs to get through the place.

This is why the host/hostess typically offers us the table closest to the front, imagining it as a convenience, except that it’s right where people are coming in and being noisy and kicking your wheels as they go by because they aren’t very spatially-conscious. And it’s away from the window table where my companion and I would prefer to watch the sun set over the Golden Gate Bridge.

So we get limited choice. There are only certain places we are essentially allowed to be in those restaurants, theaters, sports arenas, weddings and Bar Mitzvahs, parties, or business conferences and meetings, and so on. People, all with good intention, often try to mitigate this by setting a place aside for you, but what they’ve actually done is taken away my very option of having a choice. Think how it would feel for someone to tell you at an event of some kind that this is where you will sit, and that’s that.

The loss of choice and sight lines is, frankly, more frustrating for me than the fact of not being able to walk. It’s the functional issues that have the emotional impact. It’s the environment that disables, not the fact of paralysis itself.

Being short and wide in a crowd is a very tense experience. People tend to not look down, and there are lots of toes to potentially run over and shins to bang into. Getting people’s attention is not fun (my gentle hand on their arm or shoulder to ask them to let me pass, as they apologize profusely), and even if you get ahead to the scene of the action, now you have the reverse problem; being in the front of the crowd and having to work your way back. And, not being able to move in the crunch of the crowd, choice is certainly limited. Nowhere to go if you can’t even move. Or see where you are.

So the greatest appeal of eLEGS for me is to counter these two deficits of sitting, height and choice. Low and wide may not bad for certain baseball pitches, but not so great when it’s your only choice. I love the idea that I could stand up with the crowd when the Warriors go on a run against the Lakers (unlikely as this particular scenario might be), or when the room is on their feet to toast the bride and groom and watch them have their first dance as husband and wife, or to get to a closer seat toward the center for a symphony concert.

But it was some small consolation that I had the best view of Jerry Garcia in the good old days.

Related post: Part I: That teetering feeling

Gary Karp is a speaker, writer, and trainer in the disability awareness field. You can read more about Gary at Life On Wheels.