I can’t.

I was all set to write  post about finally embracing, “I can’t.” I have tried to remind myself that of course I can. It might take me 4 times as long, and it might wreck me for the rest of the day. It might leave me grunting like a Wimbledon tennis player when I “walk” down the hall, it might find me half way into an activity thinking I’ve made a terrible mistake. But in the end, I’ve told myself, I always can – in one way or another. This morning, as I wrestled with an enormous All-Clad skillet in the sink, one of the angels on my shoulder (not sure which one) whispered “It’s OK to say you can’t.”

“Yeah,” I replied.”My body has limitations, and it’s OK for me to say I can’t. Right on.” I’ve been posting – ad nauseam – on Facebook about the Paralympics (I hope you’ll be watching along with me!), so turned on by watching these athletes who trained for their particular event just as hard as the Olympians who performed two weeks ago, but who had to train through blindness or traumatic injury or some other disability.

Then this morning, scrolling Facebook, I watched a little video about the Paralympic soccer team. One player prefaced his story with the phrase, “When I woke up from the coma…” I watch them train, while listening to them talk matter-of-factly about their brain injury, or cerebral palsy, and I ask myself, what’s my excuse?

So it reposted the little video about the soccer team with my comment that,”Each time I arrive at “I can’t,” I am encouraged to take one more step.” It would be so easy – too easy – to just say I can’t. But I’d know that it’s not true. And even if no one ever accused me of being a quitter, I’d know.

So I’m ging to watch as much of the Paralympics as I can, and remind myself that I  can always take one more step.

iu

 

Going Downhill Blind

I don’t quite know where I’ve been lately. I spend plenty of time in front of my computer, and I even have a list of things to write about. But I seem to spend more time than usual staring out the window.

I’ve been working with a physical therapist who actually comes to my house to torture me. Karen is great, very positive and she’s put together a great program for me to follow. She made it clear to me that I needed to look at my PT as my job. That attitude has helped me to actually do the stretches and exercises every day. Last week, I was lamenting to her that, while it feels really good while I am doing my “workout,” is done not to get stronger. The goal, as Karen put it, is to freeze this progression where it is, to slow the downhill slide. And there is no measure of whether or not it is doing me any good in that respect. The routine is about 40 minutes long, and about an hour after I finish, I am toast. At least I am sore and achy all over for a reason now.

I hope you have had the chance to catch at least some of the Paralympics. I am blown away by watching downhill skiers, racing on one leg, or sitting in a spring-loaded seat on a single ski, or, even blind. Able-bodied ski racers have had to work hard and sacrifice a great deal to reach the top of their sport, but paralympians have had to struggle and fight just to get out of bed and stand – and then hone their sport. When I see a paralympic skier at the starting gate, I know she has had a huge struggle and fight just to get there. I am at a loss for words. I keep thinking of Ginger Rogers comment that her role in dancing with Fred Astaire was harder because she had to do it backwards and in heels. These athletes have had to endure amputations, multiple corrective surgeries, the horrors of war, etc., and then muster the courage and strength to strap into a hocky sled and go out on the ice and mix it up. Or drop out of the starting gate and plunge down the ski slope relying on a guide skiing ahead of them to tell them where to turn. It ALL blows me away. I am sorry there doesn’t seem to be a bigger audience for this. I can understand – we just had more olympic winter sport than we needed, and maybe people find watching a one-legged skier to be a little creepy. But I am sorry more people don’t watch this. The fact that I have not seen a single mention of the event in the mainstream news is a shame. There was an overload of coverage of the Olympics, but hardly a word about the Paralympics.

A quick kudos to Proctor and Gamble for producing a TV ad for their “Swiffer,” cleaning products, featuring a father/husband with a missing arm. The ad shows him interacting with his family just like a normal guy (!) and extolling the virtues of the Swiffer line, which allows him to be more involved in the cleaning. I like the fact that the ad not only doesn’t gloss over the fact that this man is missing an arm, but calls attention to it. All done to sell dust mops, but it’s a start!

Quick Hits

My wife tells me that, “If you want something done, ask a busy person.” It must be true. She is busy-woman_2one of the busiest people I know, and is somehow insanely productive – not only in her own business but in running our little household and taking care of me. I, on the other hand, have essentially nothing to do all day. Or at least nothing that anyone would miss if I didn’t do it. I have a little compost pile on my desk of notes to myself of things I want to get done “today.” That pile just keeps growing, and I never seem to get anything done. In the interest of posting at least something here, I offer a few quick hits.

  • I set up our DVR to record a selection of Olympic events, so that we could watch them on our schedule. I find that I have pretty much lost interest (except for the curling – can’t get enough!). But I am getting very excited about the upcoming Winter Paralympics, opening March 7. I could go on and on (my FB page has become something of a tribute to my obsession), but I will save that for when the games are underway.
  • The only time I seem to feel free of MS and the various difficulties it has placed before me is during those few hours when I am asleep. Maybe it’s the meds, but I very rarely remember my dreams. child-nightmareSo it was truly stunning to me when I woke up the other night startled and deeply troubled by a little tiny dream-let. I don’t know if you dream yourself disabled, I can’t recall ever having a dream of myself in a wheelchair. But the other night, I woke in the middle of the night with this fragment: I had just stood up, pulling on my pants, when I saw – literally – my lower legs suddenly vanish and I fell onto the bed. I lay there, awake, catching my breath (after checking to make sure my legs were still there), terrified by what I had seen in the dream. It is hard to convey the horror – I think this was the scariest nightmare I’ve ever had, as fleeting as it was. Perhaps it comes from the fact that it is something I ponder on quite a bit for realsies – the loss of the use of my legs. They don’t do me a lot of good now – I can stagger down the hall with a walker, I can heave myself into and out of the car and they ache and are the epicenter of spasticity in my body. But I can stand. At least for now.
  • There are probably thousands of blogs dealing with multiple sclerosis, people like me posting obervations about their lives. There is a small handful that I follow (see “Fellow Travelers,” over there on the right.) Usually, these bloggers post things that mirror what is on my mind (usually saying it better than I can.) One such post is “It’s not the disablility, it’s the…” from Mitch and Enjoying The Ride. He writes, “You often hear, ‘It’s not the heat, it’s the humidity.’ I say, ‘It’s not the disability, it’s the progression.'” Please read his words, and leave him a comment.
  • I loved this article from “Houzz,”about building ramps in the home. These are admittedly high-end designs, but nice to see access being created in such a beautiful way.

Next up: Meditation!

We’re here, we’re disabled, get used to it!

So, kudos, I guess, to Saturday Night Live for hiring their first token black female! From what I read, the casting call was not for a talented female actor, but for a black female. So, the hire was based first on gender/race, with talent second. I have not seen her (I stopped watching when SNL stopped being funny), so I cannot comment on her funnitude. But it did make me wonder, when will they hire their first token disabled actor? Disabled people are funny (and not just to watch). There’s Josh Blue, and Teal Sherer of My Gimpy Life. Even DJ Qualls, who plays a guy with MD on Legit, or Kevin McHale (the wheelchair guy on Glee). Sure, these actors aren’t really disabled, like RJ Mitte from Breaking Bad. There’s plenty more, I’m sure. I find myself wondering why there are never (NEVER) any wheelers in TV commercials. Don’t wheelers go to McDonald’s? (Not if they’re smart.) Don’t wheelers eat Cheerios, or Doritos, or drink Coke, Mt. Dew, Bud Light Lime or tequila? Is the American public so offended by, or scared of, or disgusted by people in wheelchairs that no advertiser in their right mind would cast one? Sure, Ironside was (very) briefly interesting (so brief I can’t even find a good link!), and I understand why it was cancelled after only three episodes – it was just another stupid cop show, and don’t we have more than enough of those? Maybe people didn’t like the scene of him getting physically angry at his disability. Maybe he wasn’t funny. Maybe people don’t like seeing angry black men with guns, or people in wheelchairs having sex (WTF, they can DO that?). I would have liked to see the show last a little longer to allow for the character to develop. And while it was way cool to see him, in the first episode, in an $800 Roughrider wheelchair, those three episodes did not even begin to explore the basic difficulties of life in a wheelchair.

When I watch TV, I see sit-coms and dramas and even commercials bend over backward to include people of different genders, races, sizes and nationalities. But no attempt is EVER made to include people with disabilities, with a half-handful of exceptions (please correct me if I’m wrong). Millions of Americans depend on wheelchairs, canes, and other assistive devices every day. That’s a lot of people. Why do we never see them on TV? I’m not necessarily looking for feature roles (tho that would be nice, especially if they are played by actual disabled people), but it would be enough for me to see a customer roll into a cell phone store or a restaurant or at home discussing breakfast cereals. Just a regular scene with an actor who happens to be in a wheelchair. It would be nice to see people like me. There is a new stock photo agency, PhotoAbility, that specializes in images of people with disabilities. There’s not much there yet, but it’s a huge step in the right direction. Pro Infirmis went so far as to assemble a collection of store mannequins based on real people with physical disabilities, and actually placed them in department store windows. (You GOTTA see the video!).

I think the reason advertisers are so careful to diversify their actors with people of different colors, genders and sizes is that viewers need to identify with the people who are telling them what beer to drink or product to buy. Not to mention that there are probably laws requiring them to do it. But I NEVER see anyone like me – never see a guy in a wheelchair sharing a beer with buddies in a bar (with the notable exception of this Guinness ad, which made me thirsty!), or bellying up to the salad bar at Olive Garden. Why is that? Some people have said that it doesn’t make a difference if the wheeler is REALLY disabled. But it does. The same way it would be odd and even offensive if female characters were played by men in drag, or if Ironside had been played by a white actor in blackface. (Can you imagine the backlash?) Why hire a black female actor for SNL? Why not get a guy in blackface drag?

All I’m sayin’, in the end, is that I think it is high time for diversity on TV to include people of disability. And not able-bodied actors pretending to be disabled (I get it why Ironside was played by an able actor, to allow for “flashbacks” from before he was shot by his partner.) I was so excited to see that Guinness ad, and to watch what few little bits of the Paralympics managed to squeeze onto television. I find those few brief glimpses both empowering and affirming. For the same reasons people of different ethic, gender, and orientation types are happy to see people like themselves in popular culture. It’s our turn.

Meet The Superhumans!

Just when you thought you had enough Olympic activity, here come the Paralympic games! The opening ceremonies are tonight, August 29, from London. And while we Americans got a brief, if controversial, taste of what a paralympian can do in watching Oscar Pistorius’s performance on his “blades,” that’s going to be about all we’re going to get on our side of the pond.

NBC, who ran non-stop, wall-to-wall coverage, complete with endless and often inane commentary, of the 2012 Olympic Games, will only broadcast a 90-minute roundup of the London Paralympic Games on September 16 – a week after the games close. (You can follow the games on the Team USA website and on FaceBook.)

While the Brits post, “Thanks for the warm-up,” messages, American’s will hardly notice these Paralympic games – which have already sold more than 2.5 million tickets, and are expected to be a record-setting sell-out. Here in the States, blink, and you’ll miss it.

Granted, the opening ceremonies are competing with the opening of the Republican National Convention (and who wants to miss Ann Romney’s speech?), the games do run for 11 days. And while there will be no bikini-clad beach volleyballers, or divers, swimmers and gymnasts in tiny, skin-tight spangly leotards, there will be athletes “like nothing anyone has ever seen.”  While the rest of the world is every bit as excited about the Paralympics as they were about the Olympics, Americans apparently are not.

And that is a shame.