Stop waiting to be ill enough

You’ll never feel ill enough. There will always be a little voice in the back of your head whispering that you’re fine, really, you’d be okay if you only tried harder.

That little voice isn’t the voice of reason – it’s the voice of internalised ableism, and you owe it nothing.

Find someone who can help you. Apply for the benefits you need. Use the mobility aids that make your life easier. Give yourself a break.

You deserve it. You are ill enough. You aren’t faking it, you aren’t mooching. You’re surviving, and you deserve a round of applause.

Found on the blogKipple Kipple Everywhere.

One morning in Maine

How nice to wake up in the morning (my favorite way to start the day) to find that my mind wasn’t racing off in anxiety driven confusion, my legs weren’t cramping, my arms weren’t numb, my back, or neck, or shoulders weren’t aching, and I didn’t have to get up RIGHT NOW to pee. I was actually able to lie back and close my eyes and breathe for an hour. A rare treat.

This sings me to sleep, and often plays on repeat all night. It is a comfort, somehow, to wake in the middle of the night and hear is softly playing in my ear. And to wake up with it repeating in my mind.

This is what I’ve been talking about.

I’ve been away from this blog for quite some time, dealing with some complicated shit. More about that later. But for now:

This is what I’ve been talking about. Ordinary people, doing ordinary things. Ordinary people who happen to be in wheelchairs, featured in commercials. Better they should be in mainstream TV shows and movies, but I’ll take what I can get.

  • The wheelchairs are not the focus of the story, they’re not even important to the story. This little screenplay could have been acted out equally as powerfully were the actors not in wheelchairs.
  • I love the fact that this drama shows people in wheelchairs being physical, active athletes, able to give and take on the court. I love the fact that this is not about people in wheelchairs. This is not about disability.
  • I love the fact that it proves that wheelchair users are not “bound” to their chairs. Just as we are moving towards more inclusive “person first” language we have to move away from the image of people in wheelchairs being dependent and stuck or trapped. For these men, like for everybody else who uses a wheelchair, the chair is a vehicle for liberation.
  • I love that the story empowers the men in the wheelchairs.
  • I love the fact that the kids are fully included in the father’s life and accepting of his disability, perhaps not even seeing it anymore.
  • I love the fact that Toyota stands aside, and can promote their message and their product (I still don’t know what model vehicle is being promoted, but, like the wheelchairs, it doesn’t matter.) without having to shout.
  • I love seeing myself, or someone who looks like me, portrayed this way in a mainstream commercial. Perhaps only marginalized people will understand this. (A topic for a further and lengthy, discussion.)

In the end, what makes this a really great commercial is that the product (some sort of car, I think…) is only a vehicle (pardon the pun) for the drama of a group of men playing a very physical game of basketball, ending the day without holding grudges.

I hope this film can lead the way toward more fully inclusive roles for people with disabilities.

Did I mention that I love this little film? What do you think?

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.

Doing the MS Shuffle

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 –

iu
  • Shift weight from center to the left leg.
  • Engage left leg.
  • Lift right foot, either at the knee if possible, or at the hip.
  • Move right foot forward one pace, either above the floor or shuffled along.
  • Shift weight to right leg.
  • Engage right leg.
  • Lift left foot, either at the knee or the hip.
  • Shuffle left foot forward even with right foot, or, for bonus points, one pace ahead.
  • Repeat until exhausted.
  • Demerits for falling down.
  • Demerits for forgetting to breathe.

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!