Doors continue to be the passages to social dramas that leave me profoundly alienated.
My friends tell me "it's about respect", so I should let people open doors for me, and I'm so bewildered by this that I don't think of asking what they mean.
Respect? It is respectful to me to ignore my wishes and foist unwanted help on me? or maybe it's respect for me to break out into a shit-eating grin and offer thanks for what I did not want? (and for what I see as a trap.)
Or maybe I don't know what the word means in this context. Maybe it's some usage that comes from the Godfather, and by not showing it I risk violent reprisal.
How about some respect for my mad door-opening-from-the-wheelchair skills? I did have to re-learn how and practice to get as proficient as I am. No one's interested. I've have people tear the door out of my hands in their eagerness to help. I cannot read a restaurant menu in order to see if there's something on it that I want to eat at a price I'm willing to pay without someone opening the door for me. Really? Doesn't that seem a little pathetic? I'm just standing around, not making eye contact or anything, waiting for someone open a door for me? Seriously, if I weren't in a wheelchair, you'd think I was a doormat!
And that gets me to a large slice of cognitive dissonance practiced by people around me. When I pull myself up a hill in the manual chair, I have moxie, I'm an inspiration. When I try to open a door by myself, I'm letting down western civilization in a big way. Actually, these are both every day acts, completely normal. Admittedly, I don't want to get up at 7 on my day off and go up a hill on the power of my arms. But people in all walks of life, and rolls of life, get up and exercise for their health... Why should I be different? Why can I not be permitted to live my life as I see fit? Why does my very entry into public space mean that I am no longer a person, but a symbol?
I've never been good at social forms. Abstractly, I can understand that these are little rituals, with assigned roles, that act as social lubricant. Just greasing the wheels of our day-to-day interactions where we're signaling something about our being on the same page. In practice, I want everything to be "real". Well, I can walk--um, roll--past the the homeless guy panhandling. It gives me a sort of helpless feeling, not knowing how to cross that divide, so it's more comfortable to just go on. So, maybe my only way to be "real" in the door meetings is to try and tell people that I don't want the door opened. That I'm not pan handling. I want to do it myself. I want to feel strong and effectual. Instead of helpless. "Impotent." I'm not helpless, dammit! Don't you dare look at my mode of locomotion and even think I am!
Upshot: Just so you know, if you do open a door for me, and you only get mumbled thanks--this is why there's no eye contact whatsoever. Because having help foisted upon me leaves me staring into a vortex, a long tunnel of pain, despair, bitterness. Because a horrible emptiness rises from my belly. Because I am alone, I cannot rely on anyone for anything important. Because I am reminded that I am no longer a person, merely the occupant of a wheelchair. Because my dreams, my independence, my wishes have been crushed beneath wheels as cruel as tank treads. Because empty social forms are more important than anything I can lay claim to. I do not want to look into the face that diminishes me. I do not want to thank the person who pushes me into a mental box.
Monday, February 25, 2013
Saturday, October 20, 2012
Don't Fence Me In
For years, I have been trying to explain why I don't want help in many situations. It's a shocking thing to many people.
"Fiercely independent"? That may be part of it.
The thing is that I feel controlled when someone opens a door for me... At that point, I must go through or somehow offer up an properly gracious explanation. Or go for my fallback--start yelling because I feel I must assert my independence--and I'm not very skilled at that...
I have a bit of agoraphobia. I also fear the stranger... Well, not "fear", but I keep a mental buffer around me when I'm out in public. I very easily go into "overwhelm" mode. I don't know that I need to control everything, but when people do things for me, I feel that it puts me under an obligation. What if I don't want to go through that door? What if I want to finish something else before going through it? Instead I feel herded and obliged.
Ideally, I'd like for nothing to be different. I know that cannot happen. I lost a lot of ability and I joined a separate category of person.
I'm still groping about in the dark trying to figure it all out...
(Photo from: Wilmington NC Fence Contractors)
Monday, October 15, 2012
Without Restraint
I used a mix of strategies to get around. Public transit is an important component. Trying to find parking in San Francisco is a dreary adventure at best. So, I use p.t. and I embrace it for the broader societal benefits as well.
Public transit is--well not quite, but when I think about it I tend to reach for my hyperbole--hell. Basically, if I get on a bus I either consent to be restrained in a way that would be illegal on a mental ward (not that there aren't some notable similarities between clientele of both institutions), or I sit there knowing that if there's an accident I could go hurtling off in a random direction--strapped to an unsecured monster of two or three hundred pounds that could trap me against any seat, window or floor we happen to land on, if it doesn't break my neck outright.
(Note, this is not a post about the San Francisco Bay Area's intercity heavy rail, BART. BART has different issues. I will get to them, just not in this post.)
There are a number of things I could say about lifts and ramps and seats that fold up and all those accouterments, but that's again something for another time.
When I am finally ensconced in the appointed place, the strapping in begins...
Often the bus driver asks me if my brakes are on. This is one of those unanswerable questions... I don't really have "breaks" per se on the power chairs, at least not as I understand it. If I turn off the motor, the wheels don't go around--I'm not sure that's a "brake". But I make sure I turned off my motor and say yes.
Then there's the whole finding of the belts. Remember, this is a public bus. Things get broken. And worse. So there's the regular seat belt thing that goes around my waist. Sorta. Sometimes, in that shoulder belt to the other side that you have in car, it goes over my shoulder and in front of my chair, because without legs to hold it in place, it slips off my lap... So, I wonder what this is doing for me in a practical sense.
And then there are the red belts. At least that's the color they are on AC Transit. These are the industrial, series restraints. You have two or three of them, inshallah, and they attach to your chair...
Wait, they shouldn't attach to the arms, the arms are designed to be taken off or swung up and aren't really attached to the chair that securely.... Of course, bus drivers don't know this (neither does anyone else) so I have to tell them. Perhaps, you begin to see why I'm turning to a blog in hopes of finding a wider audience...
One thing I can say about my green chair, was there were solid attachment points--four!--on the damn thing. I haven't found anything on the pink chair. I'm not sure where people and hooks should go. Story of my life, I suppose.
Anyway, you are supposed to be able to attach these two or three red belts to solid attachment points, and then tighten the red belts (they have built in ratchet type things) until the chair cannot move. All of which is fine.
But... the damn ratchet sites are where the red straps connect to the wall or floor of the bus. Completely out of my reach.
Of course, if I were paralyzed or had jerky motor control I might not have the option of tightening myself up and loosening myself when I'm ready to get off the bus. But, I don't see why I should be denied that opportunity. I want to do it myself. I am not a parcel. I am not inanimate. I can tighten my own damn straps!
Or they don't work, as I said. Or the bus driver doesn't want to use them because they are a pain and he has a schedule to keep... And one time, when I was ready to get off the bus I undid the seat belt and one end of it got caught in my chair arm. That thing was not going to move. I mean really, it was like one of those seat belts that you have to let go all the way back to neutral before it will stretch out again and it was caught. The driver had to call central so they could dispatch someone to come and fix the damn thing.
Public transit is--well not quite, but when I think about it I tend to reach for my hyperbole--hell. Basically, if I get on a bus I either consent to be restrained in a way that would be illegal on a mental ward (not that there aren't some notable similarities between clientele of both institutions), or I sit there knowing that if there's an accident I could go hurtling off in a random direction--strapped to an unsecured monster of two or three hundred pounds that could trap me against any seat, window or floor we happen to land on, if it doesn't break my neck outright.
(Note, this is not a post about the San Francisco Bay Area's intercity heavy rail, BART. BART has different issues. I will get to them, just not in this post.)
There are a number of things I could say about lifts and ramps and seats that fold up and all those accouterments, but that's again something for another time.
When I am finally ensconced in the appointed place, the strapping in begins...
Often the bus driver asks me if my brakes are on. This is one of those unanswerable questions... I don't really have "breaks" per se on the power chairs, at least not as I understand it. If I turn off the motor, the wheels don't go around--I'm not sure that's a "brake". But I make sure I turned off my motor and say yes.
Then there's the whole finding of the belts. Remember, this is a public bus. Things get broken. And worse. So there's the regular seat belt thing that goes around my waist. Sorta. Sometimes, in that shoulder belt to the other side that you have in car, it goes over my shoulder and in front of my chair, because without legs to hold it in place, it slips off my lap... So, I wonder what this is doing for me in a practical sense.
And then there are the red belts. At least that's the color they are on AC Transit. These are the industrial, series restraints. You have two or three of them, inshallah, and they attach to your chair...
Wait, they shouldn't attach to the arms, the arms are designed to be taken off or swung up and aren't really attached to the chair that securely.... Of course, bus drivers don't know this (neither does anyone else) so I have to tell them. Perhaps, you begin to see why I'm turning to a blog in hopes of finding a wider audience...
One thing I can say about my green chair, was there were solid attachment points--four!--on the damn thing. I haven't found anything on the pink chair. I'm not sure where people and hooks should go. Story of my life, I suppose.
Anyway, you are supposed to be able to attach these two or three red belts to solid attachment points, and then tighten the red belts (they have built in ratchet type things) until the chair cannot move. All of which is fine.
But... the damn ratchet sites are where the red straps connect to the wall or floor of the bus. Completely out of my reach.
Of course, if I were paralyzed or had jerky motor control I might not have the option of tightening myself up and loosening myself when I'm ready to get off the bus. But, I don't see why I should be denied that opportunity. I want to do it myself. I am not a parcel. I am not inanimate. I can tighten my own damn straps!
Or they don't work, as I said. Or the bus driver doesn't want to use them because they are a pain and he has a schedule to keep... And one time, when I was ready to get off the bus I undid the seat belt and one end of it got caught in my chair arm. That thing was not going to move. I mean really, it was like one of those seat belts that you have to let go all the way back to neutral before it will stretch out again and it was caught. The driver had to call central so they could dispatch someone to come and fix the damn thing.
Saturday, October 13, 2012
Introduction
A few years back, I was run over by a train and both my legs were amputated between the knee and hips. (There's some history here: chukkasupport.blogspot.com/ )
Life in a chair is interesting. There is, often, a sort of laziness in the way people regard the disabled. It's very much "I will follow the ADA, but not do a single thing more." And the institutional indifference is oddly contrasted with the sheer goodwill that so many civilians show me. It sort of drives me nuts. I'd like for the cityscape to be better engineered for my needs and for people to be more educated about what my needs actually are.
(I suppose that's a common complaint. Just think of some modern woman, oh, I love Bill, I just wish he understood me.)
So, among other things, this blog is an attempt at educating the world about the things that frustrate me every day. Sometimes, it's pimples on my ass that won't go away, and I really have no choice but to sit on them. Sometimes, it's people standing in curb cuts, or otherwise in my path. (Hey, sometimes that is metaphorical, as well.) Sometimes, it's a nothing more that a rant, a rant that may be educational or entertaining, or maybe just ugly.
Other than that, I'm middle-aged, a woman, heavy (and heavier than I was before the accident, there's a whole lot of incidental calorie-burning that I miss out on now), underemployed and widowed. All in all, an unfashionable sort of person.
I have a wicked sense of humor though.
Life in a chair is interesting. There is, often, a sort of laziness in the way people regard the disabled. It's very much "I will follow the ADA, but not do a single thing more." And the institutional indifference is oddly contrasted with the sheer goodwill that so many civilians show me. It sort of drives me nuts. I'd like for the cityscape to be better engineered for my needs and for people to be more educated about what my needs actually are.
(I suppose that's a common complaint. Just think of some modern woman, oh, I love Bill, I just wish he understood me.)
So, among other things, this blog is an attempt at educating the world about the things that frustrate me every day. Sometimes, it's pimples on my ass that won't go away, and I really have no choice but to sit on them. Sometimes, it's people standing in curb cuts, or otherwise in my path. (Hey, sometimes that is metaphorical, as well.) Sometimes, it's a nothing more that a rant, a rant that may be educational or entertaining, or maybe just ugly.
Other than that, I'm middle-aged, a woman, heavy (and heavier than I was before the accident, there's a whole lot of incidental calorie-burning that I miss out on now), underemployed and widowed. All in all, an unfashionable sort of person.
I have a wicked sense of humor though.
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