ab50ac991e6d66ee1402728b6cf57f28--quotes-about-people-disability-quotes I used to have a sweatshirt with this quip on it. I was newly diagnosed and newly disabled. I thought it was real funny. Well, maybe not REAL funny, but amusing. Other people seeing it would smile, and tell me they liked my sweatshirt, and we’d all have a little chuckle. But it always left me with a bit of a guilty aftertaste.

The shirt got frayed and filthy, mostly on the cuffs, mostly with mud and dirt from the hand rims of my wheelchair. It has long since been retired. I think were it not for the stains and fraying, I’d’a sent it to the rag bag anyway. Once the reality of disability set in, it didn’t seem so funny any more. I’ve come to a better understanding of the issues surrounding disability. Disabled people way before me worked very hard to ensure that I had access to those parking spaces, and more. As an advocate-by-default, I need to honor those who came before me and did the real work to ensure my right to equal access.

If we were just for the parking, none of us would be in it.

Advertisements

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.

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.

iu

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.

Cruisin’, part 2

avatarthumb

I ‘ve been out and about with my bad motor scooter – taking the short bus to Freeport (home to Maine’s #2 tourist destination, L.L. Bean, and a very accessible little downtown), and to Falmouth, and yesterday into Portland for a spin around the Museum of Fine Arts (to be dazzled by Georgia O’Keeffe, Marguerite Thompson Zorach, Florine Stettheimer, and Helen Torr) – and I was immensely pleased with the SmartDrive‘s performance at every location – brick concourse, concrete sidewalk, museum floor. The only hesitations were from my inexperience and lack of trust. Even when it popped off the chair, it was doing what it was supposed to do. It was easy to reattach, and each time I learned a little something new. Brilliantly simple.

There is always a “but…”. I wonder why there isn’t some sort of geared wheel hub that would offer a transmission brake to slow the chair when going down hill. Relying on my grip on the handrims is both difficult (was that smoke rising from the palms of my gloves?) and dangerous if my hand strength should give out – look out below! Bike mechanics, engineers, makers and tinkerers – can this be done?

Allow me one more ranty rave – the SmartDrive is a life changer. My solo outings I would never have even attempted under my own power, knowing how limited my strength can be. One of the things I used to love to do, and one of the dearest things I lost to disability, was wandering the streets with my camera. Thanks to the SmartDrive, I have that back again. Now I look at the bus map and realize that, theoretically at least, I can go from Yarmouth to destinations on my local route, including the Downeaster train in Portland, which offers me essentially…everywhere. That might not seem like much to most people, but as someone for whom those horizons previously came with enormous obstacles, being able to look at the map and see such possibilities is, pardon the expression, huge. A simple hunk of technology like the SmartDrive is empowering and liberating.

Discuss: “It’s exciting that a woman who is transgender can go to the bathroom that she identifies with, bizarre that the disabled community can’t.” (I cannot find the attribution for this.)

Cruisin’!

It’s cruise control for your wheelchair.

iu

After waiting a few months for Medicare approval and delivery, a week or so of weather delays and a few false starts (due to user error – d’oh!), I finally got to venture out with my new SmartDrive. I didn’t go far from home, in case those user errors turned out to be SmartDrive fails. My DW unfolded the chair, popped the Drive onto the frame, and I set off for a parking lot to see if I had actually figured the dang thing out.

It turns out I had, and I took off down the sidewalk on my shakedown cruise. The SmartDrive is simple – it’s the size of a big dust buster that snaps onto the undercarriage of your wheelchair, and, well, drives the chair. All you do is give the hand rim a push, and the drive kicks in, powering the chair at the same speed as your initial push. The Bluetooth wristband communicates with the drive to control the speed – push a little harder and the drive goes a little faster. Push on either hand rim to steer, and tap on the wheel to turn the drive off. That’s it.

The little thing has the power to push the chair over bumps and cracks and discontinuities in the pavement. If you are able to wheelie over a curb, the drive will power you through it. I even took it into a gravel parking area and had no problem. Up a long hill? No problem. I took it into the town hall to use the bathroom, and into a cafe for a smoothy, places a scooter or larger powerchair would not have so easily fit. No problem. I wore a bit of a smug grin as I powered up the hill hands free – save for a few steering touches to the wheels. It’ll essentially keep driving over anything until you turn it off.

Is it hyperbole to call the SmartDrive a game changer? I don’t think so. The terrain I cruised over that day in Yarmouth I’d never have even attempted before. Now I’m feeling confident that I can deal with anything the Big City can put in front of me. I’ll let you know.

Does diversity include disability?

The LA Times recently published “A list of 100 people in Hollywood who could help fix the Academy’s diversity problem.”  The list is replete with people of all colors, races, creeds and gender identities. The writers of the list said they spoke with dozens of “Hollywood insiders” to come up with the list. It seems that they didn’t talk with any of the 650 million in the largest minority group in the world. Out of 100 insiders, there is not one with disability. Could it be that there are no Hollywood insiders with disability? No wonder all we get are able-bodied actors playing the parts of people with disability, and able-bodied writers writing about disability.

When I watch TV or a movie, I see plenty of diversity in skin color and gender. But I very rarely see anyone with a disability – a person like me. When I do, it’s usually an able-bodied actor taking the role. Yes, there was R.J. Mitte in Breaking Bad, and well done at that. But remember Arte in Glee? Blair Underwood in the ill-fated Ironside? DJ Qualls in Legit? In the remake of “Roots,” how many of the African parts went to white actors in blackface? I’d put my money on “none.” How long would women – or any of us –  put up with every female role being played by male actors in drag? Not long.

I don’t need a feature film about me. I don’t need a TV show about me, although that would be nice. All I want is to see myself reflected on the screen. Imagine “Friends,” where Phoebe is in a wheelchair. The show need be no more about the wheelchair than it was about her quirky music. (Remember “Smelly Cat?”) She’d be exactly the same character, except she’d be in a wheelchair, played by Teal Sherer, of “My Gimpy Life” fame. That’s all. I’d be fully satisfied by that.

(I will admit that I am not a consumer of current television programming, so I may well have missed something. Correct me if I’m wrong.)

And while we’re at it, remember, Corporate America, people with disabilities go to McDonald’s, they buy cars, and engage in sports. And there’s a heck of a lot of us. Just sayin’.

If any of my millions of Faithful Readers have any expertise in, connection with, or inclination towards screenwriting or media production, drop me a line.

*********************************************************************rev-up-1-300x160CLICK FOR MORE

 

I’m down here!

iuHugging someone in a wheelchair is not all that different from hugging someone…not in a wheelchair. It doesn’t have to be like in the picture (the only image The Google was able to offer me). Although I bet that was one of best hugs either of these two ever had. It’s really pretty simple, if you think about it.

Just come down to my level. I’d come up to yours, but you can see how that’s not going to work. Pull up a chair or kneel down, squat if you have the leg strength. Hell, sit in my lap. We just need to be at eye level – the same as you would do if we were both standing. The rest should be self-explanitory.

That protocol also applies to holding a conversation with a person in a wheelchair. Craning my neck, trying to bridge the three feet between your height and mine, is uncomfortable. Neither of us wants to be in this physical relationship, me way down here and you way up there, but there’s nothing I can do about it.

I realize as I write this that I have not done my part in this dance. I have not suggested to the people who awkardly bend down to give me a hug that there is a better way.

So I’ll ask. Come down here and give me a hug. We’ll both be better off for it.