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.)
It’s cruise control for your wheelchair.
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.
I saw a t-shirt once that said, “I do the MS walk every day,” sarcastically referring to the well-known MS Society fund raiser. For my MS walk – or more precisely my MS shuffle – there are distinct steps. (Follow along if you’d like!)
The MS Shuffle: Standing at your walker –
This is the same pattern for normal walking, the MS Shuffle just requires conscious attention to each part. It can actually be a very mindful, almost meditative way to walk, breaking down each step into it’s component parts and paying careful attention to each part. It becomes a sort of mantra, “Shift weight, engage leg, lift foot, step. Breathe.”
Maybe I should lay some of those Arthur Murray dance instruction foot prints on my floor to guide me around the living room. And find a very slow box step to play. Before long, all the hep cats will be doing the MS Shuffle. Remember you heard it here first!
Many years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.
In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.
So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.
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.