Pass the brie

I sometimes get emails after I write a post about my life prior to acquiring quadriplegia asking what it's doing on my blog. "It's got nothing to do with disability," the person says. "Not sure why you put it up there."

Asking me to deny the years of my life prior to acquiring my disability, however, seems to me to be just as silly as those who expect me never to refer to living with a disability in conversations. Those who do this really don't understand that my life is woven with experiences from all the years I've lived. It's not an either or to me.

I write about my experience of living with quadriplegia, how it's taught me perseverance and resourcefulness, about my strengths and weaknesses, about forgiveness, trust and gratitude, how it's made me laugh and cry and deepened my faith in myself, others and God.

But the experiences from my life prior to acquiring my disability are just as rich and varied and full of spiritual meaning in the context of my whole life. It would be ridiculous to deny those experiences.

Whenever I hear the phrase "an acquired disability", I think of "an acquired taste"- and I wonder if some of this is a language issue. Having an acquired disability is not the same as learning to like a type of cheese or even a state of being. People would laugh if you made that analogy to a nondisabled life. Living with a disability isn't a static state either. The rest of my life happens amidst all the "quad" jokes, cleaning cat hairs out of my wheelchair casters, learning to trust new aides, and figuring out a schedule that is both efficient and leaves me as much independence as possible. There is no doubt that in one sense, the "acquired taste" of living with quadriplegia becomes easier with time. There is a familiarity now to things that were at first novel and sometimes frightening. I no longer deal with the shock of realizing that some places are still not accessible and how that dynamic plays out in the rest of the world. But it isn't the same as learning to like a certain type of cheese and once and for all I am a lover of brie!

To my reader I say "It all has to do with living and doing that with a sense of humor and faith when humanly possible," whether I walk or roll. I may never acquire certain things, but I hope I never lose the perspective that we are all in this world together. I had friends with disabilities before I acquired mine and have friends without disabilities now. No matter how much I advocate for those in the disability community, I pray I never forget that many whom I count as my dearest friends are allies.

Pass the brie.

Not a problem

It was cold last night, perhaps made colder by the fact that I don't have an accessible thermostat. Of course I could pay to fix that which is my responsibility as a disabled tenant, but I've already had to deal with lots of other issues which cost bundles, so it's a compromise I live with.

Like many other issues of access, it's not a problem until it is.

I think that's why issues of access are often perceived as personal problems, even seen as complaints or gripes, because until you are the one who can't turn the heat on or get into a place or check out a menu that's not in Braille etc. it's not a problem. That's why living with a disability 24/7 is much different than simulating it. During a simulation of being a quadriplegic, someone could just walk over and turn the heat on.

Sometimes when these things happen, I think "Simulate this!" and chuckle.

Lest I be seen as griping or complaining, however, I want to be quick to add that many of the sweetest, most special memories I have involve living with a disability. It may offer a different set of options at times, which society labels as limiting, but it also opens up a huge array of choices and situations I would never have encountered.

That positive side of living with a disability is not often portrayed in movies or the media. This is everyone's loss. I get excited when I read books or see movies showing the joy of living with a disability, celebrating the way people with disabilities live.

On balance, I'll trade a few cold nights for that.

Congratulations, Dream Mom

Congratulations to Dream Mom on having a recent post of her great writing about living with her son, who has a disability, published by Blogburst.

I'd like to share a link here to the post, called When the Glass is Half Full, because it's about gratitude and joy. I guarantee reading it will leave you with a taste of good and positive thoughts.

Someone left the cake out in the rain

I remember the first time I heard that lyric. I was in my teens and carrying a guitar in a case covered with decals from states ranging from the east coast to Wisconsin from a road trip. My goal was to hit California - which I did.

I played my guitar at college campuses from the east to west coast one summer, traveling via a one way Greyhound bus ticket. I wanted to see the country. I remember deciding that playing guitar at campuses was the best and safest way to add to the money I'd saved, so I'd open the banged up guitar case with the worn red felt interior, strap my guitar on and start performing in a college quad, near the student center or wherever I thought students would congregate and want to hear music.

I played some Segovia and Bach, then some folk songs and eventually put a few blues tunes in. Once in a while I would wait until the crowd thinned out after classes began and just compose rather than perform. Students still wandered by, sat cross legged and listened and tossed money into the battered guitar case.

My guitar had a hole in the base of it. Its name was Oscar. I bought it at the Englishtown flea market and the seller, a grizzly 80 year old with one good tooth left in his lower jaw, told me that it got "banged around" on the delivery truck but it was otherwise new. Except for the hole. He was no guitar player, he said, so he didn't know what that did to the sound. I didn't say a word, just picked the unwanted, rosewood guitar up and began to play. I knew the moment I heard the first notes that I had something special. I paid him thirty dollars for Oscar and he threw in the worn battered case, that was luckily a turtle shell and built for traveling.

So a month later I was at the University of Wisconsin playing when a light rain began to fall. As usual, my guitar case was open, awaiting tips. When the rain picked up, I ducked under a nearby awning and as I huddled there, holding Oscar out of the rain as much as possible, I overheard a student say "Someone left the case out in the rain."

And I smiled, thinking of the other lyrics, the real lyrics. And began to sing them, running out toward the few students standing over the guitar case. We danced and sang "Someone left the cake out in the rain...I don't think that I can take it 'cause it took so long to bake it and I'll never have that recipe again..."

I can still smell the rain from that day, still see the students darting for cover, still feel Oscar's rosewood finish under the tips of my fingers. And, now that I think about it, perhaps leaving things out in the rain as a literal translation isn't a bad thing. Doing things differently can open up a whole new perspective and lead to joy. And maybe put us in a place where we're more open to challenging assumptions.

The Beast Off Roads

Two of my nephews came over today, stopping by after dinner (since I can't get into their house because of the steps). The 11 year old had seen my power chair (aka the Beast) once before, but his older brother, the 17 year old,  hadn't.  The 17 year old's first question was "What can it do ? Does it climb over obstacles?" and I proceeded to show him exactly why it's called the Beast.  

I know that's a good name for the chair because no one ever asks why I called it that. All they ever say is "Wow" , and then they walk in a very wide arc around it. 

 Today it was warm enough to go outside, so I rolled over to a nearby park this afternoon to try out a bike path. The Beast took the rolling hills in stride and when the path ended and I had to off road (you know I hated that NOT) the chair didn't even hesitate. I've always struggled with pushing, since I'm a quad  and manual chairs are  harder to push on grass. So it was  a feeling of immense freedom, not having to worry about the surface first. Which I'm sure makes it all more exciting to me than the average bear after a decade of quad pushing.

Or maybe not. 

I headed down a side street. There was a guy on a bike lighting up a cigarette. He was watching me approach and since the sidewalk was new I was going fast.  I thought he was a teenager but as I got closer I could see he was middle aged. He lit his cigarette and asked "How fast does that thing go?" and then "Does it climb over things?"

The Beast off roads. Oh yeah.

[Visual description: A photo of an Invacare TDX SP  power chair is shown.]

Bringing Christmas joy

Merry Christmas everyone! I hope this year finds you full of the joy, peace and wonder of the season. 

Celebrating Christmas in ways that help us realize these gifts enhances our spiritual life. One woman celebrates by bringing gifts to those who are forgotten, taking time to get to know each person and shopping for a meaningful gift.  Having worked in a nurse home before retiring, she says  "A lot of people become upset at such situations and they try to stay away from it. Act like it doesn't happen. If you ignore it, it will go away. But it's real. It's real, real, real."

Addressing the very real needs of those we meet is part of acknowledging that each person is equal in God's eyes, worthy and deserving of His care and ours.  When we do that, we're keeping it real.

Speaking of joy, let me introduce you to joyful noise, a chorus of adults with disabilities with 30 members, ages 20 to 65. 

This chorus has given more than fifty performances in NJ and the Philadelphia area. They are on a Mission to Inspire to bring their joy of singing to conductors, music therapists, and educators from the Mid-Atlantic to New England region. 

[visual description: A photo of joyful noise is shown. Approximately a dozen members wearing turquoise T shirts are singing, along with their composer, conductor and song leader Alice Parker, who stands to the left.]