Guys in wheelchairs need hugs, too.

If you want to hug the guy in the wheelchair, come on down here. Don’t be shy. Come down where I can reach you. Take a knee or pull up a chair, and let’s do this thing. The A-frame hug – with you bending over at the waist and us both trying to figure out what to do with our faces and where to put our hands –  is better than no hug at all, but it’s not satisfying to me, and probably not to you either. There’s nothing like a real unqualified all out hug and kiss and squeeze. The intensity and duration of the hug and or squeeze is variable consistent with the relationship of the participants and the occasion, and the kiss is always optional (I’ve got a big beard and I fully understand if you don’t want that in your face). But the hug and the squeeze is the whole point.

It’s the same for having a conversation of any consequence or duration. If you come down here, pull up a chair and get down to my level (in more ways than one), we can chat all night and neither of us will get a stiff neck. Doing it this way does require a bit more of a commitment from you – it’s harder to casually wander away when you’re sitting in a chair (trust me, I know). I promise you your commitment will be appreciated.

I’ve been down here, waist high in the world, for some time. The view is occasionally quite interesting – I’ve got a good excuse for looking at people’s butts – but as you can imagine it is usually not terribly inspiring. Of all the things I miss about being down here, apart from the whole “walking” thing, hugs are near the top of the list. Getting down on one knee doesn’t need to feel like you’re proposing to me (sorry guys and gals, he’s happily married!) (although, as my grandfather said, I’ll try anything once.) The whole idea of the arrangement is for less awkwardness.

But if this is getting too complicated, the classic fist bump is perfectly fine. Even better if you jazz it up with some fireworks.

Recommended reading: Waist High in the World, by Nancy Mairs.

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My Clown Car

I’ve been working on this post for a month. The central image equates my wheelchair to a Shriner’s clown car, but the narrative has been eluding me.

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In each attempt and revision, I find myself bumping up against the same wall. I originally thought it would be a quick anecdote, amusing and off-hand, but the more I thought and wrote, the deeper and more tangled it got. I came to the realization (one of several) that I do not identify as a person with disability, but as non-disabled person who can’t walk. I can still stand briefly, with effort and grab bars, so my memories of walking are fresh and un-fading. Such a simple thing, standing up and going for a walk. The idea persists that this disability is only a passing thing, and that if I keep working my PT program, eat clean, etc., I’ll be back on my feet. Disability is an attitude, right? Being sick and never getting better does not make any sense. How can this be? Even I don’t believe that I can’t walk. I feel a bit like a fraud.

There’s a measure of shame when I ask for accommodations, when I “allow” people to do things for me that I “should” be able to do myself. That I am somehow faking or not trying hard enough or that I’ve given up and given in. That I am making a choice not to walk. I know none of that is true, but a large part of me isn’t convinced. There is no objective evidence, no clear reason why I can’t walk. All I have is an MRI image of my brain with dark spots and blank spots and a lot of grey, none of which is comprehensible to me.

Any time I venture out into the world, I am reminded, in no uncertain terms, that the world sees me as less. It is a world not made for people like me. A simple thing like not being able to walk puts endless obstacles in my path, obstacles that would vanish if I would just get up out my stupid clown car. It is a constant challenge not to give in to shenpa and “bite the hook” that dangles, tantalizing, in front of me. This feeling of being less is absorbed subliminally, through the skin. A blatant indicator of my less-ness is with me everywhere I go. It’s the clown car I sit in every day.

Further reading: Waist High in the World, by Nancy Mairs. Shout-out to my peeps at MyCounterpane.com for their unflagging support and encouragement. Thanks to Radio Paradise for providing the soundtrack. And finally, I mean no disrespect to The Shriners or their little cars, who have provided many years of service and entertainment to the wider world. Long may you roll.

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!