Someone asked me about my Sunday wheeling experiences.
Did people stare at me?
I have no idea. I wasn't looking at people, I was looking at the paintings.
Did people treat me like I was invisible?
No. I think people were acutely aware of me. On a beautiful and crowded spring Sunday, the museum was packed by noon, but I experienced no problems with crowding. When I backed up, I always checked that no one was behind me and no one ever was. Thinking about it, I realized that was odd. Instead, I realized that there seemed to be no one around me at all.
In fact, I seemed to have created an inviolable space around me. I have to admit, given my intense dislike of crowds, I liked that.
When you were a kid, you probably had a toy of iron filings encased in plastic and you moved a magnet around to draw the filings near the magnet. I was the opposite of that. I created an anti-magnetic zone.
I already know what it's like to feel invisible. I've known that feeling for at least the past twenty years and have felt it especially in the past ten years. Being deliberately avoided somehow makes me visible. You have to see me to avoid me.
I know that to some among the wheeler community, invisibility and avoidance are sources of grief, but I say bring it.
Thursday, May 21, 2009
Sunday, May 17, 2009
And the big deal about all this is...?
Last night, I set my alarm clock for early this morning and when it rang, hauled myself out of bed.
I had a nice-ish outfit waiting, black trousers, black shoes, a black sweater, conservative earrings. Dressed myself, put on some makeup, stuffed my windbreaker with the stuff I would normally carry in my purse and had a momentary panic when I couldn't find my car keys. I found a spare and will look later for the first set.
In the car, I put both forearm crutches and by the time I parked near the train station, had already decided I would go with one crutch. Surprisingly, it did help with my feet.
Previous experience has taught me that a physical signal like this can be valuable. I had surgery about ten years ago and although my feet were not involved in the surgery, I used a cane when I was outside. This showed people that they would need to go around me if they wanted to go faster because I was already going as fast as I could.
I took my time getting my ticket and a cup of coffee at the station and took a seat on a bench. By the way, I have already noted how very inaccessible this place is for a wheeler. It might be okay if you have a wheelie placard, but it will involve a ride in a stinky-piss elevator. I took the escalator to the platform and sat on the bench closest to the door.
Took the train into the city and walked across the street to the bus. There was a wheeler woman there and her friend waiting to get on the bus. The driver lowered the ramp, WW went up and I gratefully followed.
During the trip to the museum, the driver kept double checking where WW and Friend were going - in Spanish. "Si, si," they kept saying in Spanish. "We're going to this museum."
"And me too," I added in Spanish. WW and Friend laughed. When we were left out, the bus driver kept telling us to go to the east, but I knew we needed to go west and he had dropped us two blocks north of the ground floor entrance.
I borrowed a wheelchair, put my crutch in coat check, and with WW & Friend, took the elevator to the Impressionist paintings.
I'm sure I'll get a better report from my body tomorrow, but right now, I am very, very, very grateful that I used the wheelchair. My feet don't hurt. At all. My shoulders are a little sore, but if I hadn't had to walk twenty blocks south, they wouldn't. (The bus route was closed due to a parade.)
This is it, overall: I was not turned on. I was not all jazzed. I was relieved. Relieved, do you hear me? Relieved. It was so good not to have to worry about my feet giving out on me. I had a very small, specific agenda. I wanted to see the Impressionist paintings at the museum and I did. Painlessly.
I got to spend a lot of time with the paintings I wanted to see. I read the informative little plaques next to the paintings. I got to study the brush strokes in a Van Gogh iris. I saw the mosaic-like tiny rectangles of color in Paul Signac's "View of the Port of Versailles".
Later in the museum cafe, I had lunch with a glass of wine - just one - that had me dangerously close to an "I love you, man" moment while watching the skaters and bikers zoom through Central Park.
When I knew I was saturated with beauty for one day (likely a year or two, unfortunately), I returned to the cloak room, reclaimed my crutch, returned the wheelchair and went on my way.
I don't know what the big deal was about all this in my mind. Using a wheelchair proved to be a wonderfully useful thing that saved me a great deal of discomfort and allowed me to enjoy my museum experience far more than I would have otherwise.
I had a nice-ish outfit waiting, black trousers, black shoes, a black sweater, conservative earrings. Dressed myself, put on some makeup, stuffed my windbreaker with the stuff I would normally carry in my purse and had a momentary panic when I couldn't find my car keys. I found a spare and will look later for the first set.
In the car, I put both forearm crutches and by the time I parked near the train station, had already decided I would go with one crutch. Surprisingly, it did help with my feet.
Previous experience has taught me that a physical signal like this can be valuable. I had surgery about ten years ago and although my feet were not involved in the surgery, I used a cane when I was outside. This showed people that they would need to go around me if they wanted to go faster because I was already going as fast as I could.
I took my time getting my ticket and a cup of coffee at the station and took a seat on a bench. By the way, I have already noted how very inaccessible this place is for a wheeler. It might be okay if you have a wheelie placard, but it will involve a ride in a stinky-piss elevator. I took the escalator to the platform and sat on the bench closest to the door.
Took the train into the city and walked across the street to the bus. There was a wheeler woman there and her friend waiting to get on the bus. The driver lowered the ramp, WW went up and I gratefully followed.
During the trip to the museum, the driver kept double checking where WW and Friend were going - in Spanish. "Si, si," they kept saying in Spanish. "We're going to this museum."
"And me too," I added in Spanish. WW and Friend laughed. When we were left out, the bus driver kept telling us to go to the east, but I knew we needed to go west and he had dropped us two blocks north of the ground floor entrance.
I borrowed a wheelchair, put my crutch in coat check, and with WW & Friend, took the elevator to the Impressionist paintings.
I'm sure I'll get a better report from my body tomorrow, but right now, I am very, very, very grateful that I used the wheelchair. My feet don't hurt. At all. My shoulders are a little sore, but if I hadn't had to walk twenty blocks south, they wouldn't. (The bus route was closed due to a parade.)
This is it, overall: I was not turned on. I was not all jazzed. I was relieved. Relieved, do you hear me? Relieved. It was so good not to have to worry about my feet giving out on me. I had a very small, specific agenda. I wanted to see the Impressionist paintings at the museum and I did. Painlessly.
I got to spend a lot of time with the paintings I wanted to see. I read the informative little plaques next to the paintings. I got to study the brush strokes in a Van Gogh iris. I saw the mosaic-like tiny rectangles of color in Paul Signac's "View of the Port of Versailles".
Later in the museum cafe, I had lunch with a glass of wine - just one - that had me dangerously close to an "I love you, man" moment while watching the skaters and bikers zoom through Central Park.
When I knew I was saturated with beauty for one day (likely a year or two, unfortunately), I returned to the cloak room, reclaimed my crutch, returned the wheelchair and went on my way.
I don't know what the big deal was about all this in my mind. Using a wheelchair proved to be a wonderfully useful thing that saved me a great deal of discomfort and allowed me to enjoy my museum experience far more than I would have otherwise.
Tuesday, May 12, 2009
Accessibility, Independence and Pure Bone-Headedness
I heard someone say not too long ago that most people with a disability will sometimes go to lengths to appear less disabled than they are. If a quad can get by with a manual wheelchair, he'll ditch all thoughts of a power chair, even if it means less mobility at a greater effort. In the last couple of days, I've seen guys who probably needed KAFOs or at least AFOs walking unbraced.
Over the last year, I've developed problems with my feet, ankles and knees. They aren't always painful, but when they are, they hurt like hell and I spend those days moving around as little as possible. Doctors I've consulted advocate surgery, but I'm not convinced that that's the proper route to take.
I have an ugly orthotic that I could wear on the bad days, but I don't.
Perversely, my pretender / wannabe / dev self has a new fixation. I live close to New York and I want very much to go to one of the museums there. No matter how I get there, it's going to take a lot of walking. As much as I need to see beautiful things, have a day away from my ordinary life, I know that this expedition presents problems.
Getting to the museum involves a train trip and a bus trip and a lot of walking.
Am I ready to take my crutches into the city? Can I deal with getting onto the train platform, then getting from the train station onto the street? It's a considerable distance. Will my shoulders give out? I know that by the time I got to the museum, I would be very willing to rent one of their wheelchairs.
If I don't take crutches, how far can I walk before my body lets me know it's had enough? Would I be able to make it to the bus stop? When I got to the museum, I would show up as someone who looks perfectly AB - who wanted to rent a wheelchair.
The last time I went into New York, to this museum, I ended my visit sitting on the steps, trying not to cry like a baby because I hurt so much. Walking a block and sitting down is not a possibility in NYC. Once you get up, you keep going until you fall down.
In the end, sitting here in front of my PC, I know that there are so many issues here that I don't know what the one real issue is. And so I stick in my day to day life and beauty will have to wait.
Over the last year, I've developed problems with my feet, ankles and knees. They aren't always painful, but when they are, they hurt like hell and I spend those days moving around as little as possible. Doctors I've consulted advocate surgery, but I'm not convinced that that's the proper route to take.
I have an ugly orthotic that I could wear on the bad days, but I don't.
Perversely, my pretender / wannabe / dev self has a new fixation. I live close to New York and I want very much to go to one of the museums there. No matter how I get there, it's going to take a lot of walking. As much as I need to see beautiful things, have a day away from my ordinary life, I know that this expedition presents problems.
Getting to the museum involves a train trip and a bus trip and a lot of walking.
Am I ready to take my crutches into the city? Can I deal with getting onto the train platform, then getting from the train station onto the street? It's a considerable distance. Will my shoulders give out? I know that by the time I got to the museum, I would be very willing to rent one of their wheelchairs.
If I don't take crutches, how far can I walk before my body lets me know it's had enough? Would I be able to make it to the bus stop? When I got to the museum, I would show up as someone who looks perfectly AB - who wanted to rent a wheelchair.
The last time I went into New York, to this museum, I ended my visit sitting on the steps, trying not to cry like a baby because I hurt so much. Walking a block and sitting down is not a possibility in NYC. Once you get up, you keep going until you fall down.
In the end, sitting here in front of my PC, I know that there are so many issues here that I don't know what the one real issue is. And so I stick in my day to day life and beauty will have to wait.
Wednesday, May 6, 2009
That Girl Again
A few days ago, I was at the doctor's office when I heard a couple of kids squeal in the hallway, the distinctive sound of crutches on the carpet, and into the waiting room came a little girl in KAFOs on crutches.
With her was her mom, her baby sister and her younger brother. The mom settled the kids down and they behaved beautifully. In fact, I don't think I've ever seen such well-behaved children before.
I smiled at them and went back to my magazine. I kept my eyes on the paper although I wanted very much to study the girl's braces. When she came in, I saw from the corner of my eye thermo-plastic with sturdy aluminum or stainless steel joints.
It wasn't long before I was called, so left, the little girl nearly forgotten. She was somewhere on the edge of my consciousness and I couldn't figure out why she was still here.
This morning, I realized that she was the new version of the little girl on the palomino that I saw so many years ago. It was so odd. It was as if a circle had been completed.
But if it was completed, why am I still having such a problem with my urges to go out crutching in public? This has been a problem with me lately. Although I've been away from this blog for a long time, my interests, my wishes, my desires have not left me.
What does it mean, I ask myself. What does it mean?
With her was her mom, her baby sister and her younger brother. The mom settled the kids down and they behaved beautifully. In fact, I don't think I've ever seen such well-behaved children before.
I smiled at them and went back to my magazine. I kept my eyes on the paper although I wanted very much to study the girl's braces. When she came in, I saw from the corner of my eye thermo-plastic with sturdy aluminum or stainless steel joints.
It wasn't long before I was called, so left, the little girl nearly forgotten. She was somewhere on the edge of my consciousness and I couldn't figure out why she was still here.
This morning, I realized that she was the new version of the little girl on the palomino that I saw so many years ago. It was so odd. It was as if a circle had been completed.
But if it was completed, why am I still having such a problem with my urges to go out crutching in public? This has been a problem with me lately. Although I've been away from this blog for a long time, my interests, my wishes, my desires have not left me.
What does it mean, I ask myself. What does it mean?
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