Wednesday, July 31, 2013

The Ring Theory

A while back, I came across a piece by Susan Silk and Barry Goldman that talks about how to behave in relation to another's trauma. How Not To Say The Wrong Thing. Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it. The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. Now apply this to personal trauma. The closer to ground zero, the more a person is affected by the trauma. A significant other would be close to the center whereas a next door neighbor would be further away. In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you. Instead, dump your feelings about the situation on someone even less affected than you. To those closer to the center, give love and comfort and support. And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want. That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. Obviously there are limits to this, like how long the person experiencing trauma is at the focal point. Life moves on, people adjust and eventually things shift. If your beloved cat dies of old age, you probably aren't at the center of things as long as you might be if your beloved cat was hit by a car at age five. Degree of trauma matters in terms of duration of the complain/support rule. Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful. In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life. Make me cope with your feelings about my predicament? Go away. Decide you know better about my situation than me? It's time for a friendship vacation. Silk and Goldman do not touch upon one aspect of the situational dynamics. When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things. If you push the person away, then you lose any hope of gaining support in the future. If you tolerate the suboptimal behavior, then you open yourself to more of the same. At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it. Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. Ground zero needs to be about the trauma not drama. Offer love, support, foot rubs and pot roast. Refrain from offering up yet more for the person with the trauma to handle. Make it your unspoken gift to them. How Not To Say The Wrong Thing. Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it. The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. Now apply this to personal trauma. The closer to ground zero, the more a person is affected by the trauma. A significant other would be close to the center whereas a next door neighbor would be further away. In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you. Instead, dump your feelings about the situation on someone even less affected than you. To those closer to the center, give love and comfort and support. And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want. That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. Obviously there are limits to this, like how long the person experiencing trauma is at the focal point. Life moves on, people adjust and eventually things shift. If your beloved cat dies of old age, you probably aren't at the center of things as long as you might be if your beloved cat was hit by a car at age five. Degree of trauma matters in terms of duration of the complain/support rule. Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful. In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life. Make me cope with your feelings about my predicament? Go away. Decide you know better about my situation than me? It's time for a friendship vacation. Silk and Goldman do not touch upon one aspect of the situational dynamics. When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things. If you push the person away, then you lose any hope of gaining support in the future. If you tolerate the suboptimal behavior, then you open yourself to more of the same. At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it. Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. Ground zero needs to be about the trauma not drama. Offer love, support, foot rubs and pot roast. Refrain from offering up yet more for the person with the trauma to handle. Make it your unspoken gift to them.

Tuesday, July 23, 2013

Misconceiving

Transgender(ed) people have an expression used to describe the way another person looks at them, sees certain identifiers they link to a particular gender and then assigns them that gender. Misreading. An androgynous person with a prominent Adam's apple is read as male. If they instead had long nails and heavy eye makeup, they would probably be read as female. In our heads, we all have traits we consider "male" and traits we consider "female." Based on their presence or absence, we assign gender. a collection of traits goes into someone's head and out pops a gender label. This drives some trans people nuts. So what if you can see their Adam's apple? If they call themselves female, then they are female. Period. People with disabilities are misread in an entirely different way. For us, it starts with a single entity – white cane, dog guide, wheelchair, prosthetic, support cane, hearing aid, use of ASL or informational disclosed – that identifies us as disabled. From there, we are assigned traits and entire lives are created for us in the mind of another. We are a word that leads to an entire story. Maybe the word "misreading," already claimed by another group to mean something specific, is the wrong term to use. Maybe it should be "misconceiving," which has the element of *creating* in its crafting. To the stranger who has decided they know what my life must be like, I can say, "You are misconceiving me." They might not know what I mean, but the explanation "You see my disability and then create this concept of what you think my life must be like which is inaccurate," is far easier to give than debunking each false belief, one after the other. A broad term to convey a cognitive tendency. Works for me.

Wednesday, July 17, 2013

......because

It all began when a person in a wheelchair boarded my bus and the driver made the person with the cart move to a seat where the cart would obstruct the aisle. I was not asked to move, but after the bus got underway again, I turned to the cart's owner and suggested I relocate so she could have a seat where the cart would fit. In the process, I bumped my head. ......because I tried to help. Next stop my psychiatrist's office. Typically, his patients flip a switch to indicate their arrival. I cannot do this since there are no accessible labels and I cannot seem to retain the switch location in my head. It has never been an issue in the two years I've been seeing him -- he's always come out into the waiting room to retrieve me. This time around, when I had waited ten minutes past my allotted time and could hear him speaking back in his office, I called leaving a message on his voicemail indicating my presence. Another patient eventually arrived, flipped the switch and my doctor materialized, seeming surprised at my presence. When I said, "Um, I don't know which switch to flip and this has never been a problem before," his reply blew my mind. "I just thought you weren't coming. I never thought about the switch." ......because I'm so unreliable. Next was the man by the elevator. He clearly wanted to be helpful, did not know how and used hovering as a means to deal with his internal conflict. He kept telling me things I already knew or was working on figuring out and then continued WATCHING me. He did alert me to the goo stuck to Camille's leg, becoming flustered when his phone rang while he was trying to pull it off. I waved him away, determined removal by pulling wasn't going to work and took off. While waiting for the bus, I used the handy scissors on my pocket knife to remove the goo-matted fur from Camille's leg. ......because boy scouts have nothing on me. Once again on the bus, I was sharing a three-person seat with a man, who moved when an elderly woman joined us. The woman made loud, critical declarations about his behavior and I think I offered something like, "Maybe he thought three people and a dog was too much on one seat and decided to give us some space." Then the woman began to tell me about her blind neighbor. This *never* turns out well. Ever. Her neighbor was "so amazing" for doing everything on her own, even shopping. She could cook, too. It was all just so amazing that she thought the woman couldn't possibly be blind and had an argument with another neighbor about it. I suggested maybe she could change her definition of what a blind person could do. I was then told about how this blind woman assembled her nephew's birthday present on her own, using screwdrivers and everything. "Amazing" was repeated a few more times. I said I liked to assemble furniture. The topic shifted to her evening's attendance at a baseball game. She has back trouble and the stairs are really steep. I commented that it sucked that ball parks weren't accessible to everyone. She thought it was just wonderful that strangers would reach out and offer their arm so she could descend the stairs. I repeated my comment about lack of accessibility. She repeated that people were just so wonderful. ......because "wonderful" and "amazing" hadn't been said enough. Off the bus and walking home, I was crossing a street when not one, not two, not three but FOUR skateboarders whizzed past me while I was in the middle of the street, startling Cam so much she actually moved sideways and stopped in her tracks.. ......because the joy of boarding trumps the safety of others. Upon arriving home, I yelled "ARGH!" at the top of my lungs and then did it a few more times. Camille went and had a drink of water. About when I stopped the yelling, she walked over and vomited up... everything at my feet. ......because a comedic author is clearly crafting the story of my life.

Tuesday, July 16, 2013

Comic

One of my long-time readers sometimes comes across comics with a disability theme. He then types up a description for me. As soon as I read this one, I knew it had to immediately go up here. among other things, it is an awesome example of "You may think I'm drowning, but this is the way I swim." The artist is Fábio Coala and I think more of his work can be found at The actual comic is at The description is as follows: In the first panel, a boy with brownish skin and spiky brown hair under a green ball cap is holding a large cardboard box with air holes. He asks "What is it mom?" From off panel a voice says: "Open it!" In the second panel, the box is open. A yellow puppy is emerging. It's right front leg is missing. From off panel the boy says "A puppy!" In the third panel the boy is holding the puppy looking dismayed. He says: "Wait... What kind of a puppy doesn't have a leg?!" The puppy is gleefully wagging it's tail. In the fourth panel the boy is storming off with a tear in his eye. He shouts "What's the point of a sick dog? This sucks! I don't want no puppy. I don't want anything. I hate you!" The puppy looks at him confused. There's a pink ball next to it. In the fifth panel, the puppy looks at the ball and wags his tail. In the sixth panel, the puppy takes the ball in its mouth. In the seventh panel, the puppy is running with the ball in its mouth. In the eighth panel, the puppy falls over with a "pof!". The ball slips out. In the ninth panel, the puppy has retrieved the ball and is running again. In the tenth panel, the puppy approaches the boy who's playing a video game. In the eleventh panel, the puppy is looking at the boy while holding the ball and wagging its tail. The boy turns and says "You're not like the other dogs... You can't play. You're only there for people to feel sorry for you. Don't pretend you're happy." In the twelfth panel, the boy takes the ball and says "Gimmie that. Now catch... and get out of here." The puppy looks elated. In the thirteenth panel he throws the ball. In the fourteenth panel the puppy is running. In the fifteenth it falls over again with another "Pof". In the sixteenth, the boy says sadly, tears in his eyes, "See, you're not like the others." In the seventeenth, the dog regains its footing. In the eighteenth, it lunges and latches onto the ball, happy again. In the nineteenth, the boy smiles, tears still in his eyes. In the twentieth, he wipes away a tear and smiling says "It's no use, right? You don't care about your leg... You're happy anyway..." In the twenty first, the puppy looks at its missing leg and raises an ear in confusion. In the twenty second, it returns to looking at the boy with absolute joy. In the twenty third, we finally see the boy's full body. His own right leg is amputated above the knee. He walks on crutches saying "OK, let's play outside." The puppy runs ahead of him barking.

Monday, July 8, 2013

Perspective

At FabTherapists's recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn't need, I could actually question the person about the impact of my response and their initial motivation. Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and "it put my stuff into perspective." I hate when people do this and had a rather intense response. It did not go well and the therapist said, "That pushed your buttons. Next week how about you come back and explain why." I decided that a blog entry would be an excellent way to clarify my thinking. My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others' circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It's not fair to do that to yourself. My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person's life must be like has to be formed. What is that impression based upon? All the societal beliefs about disability that we are taught come into play to create a picture of what that person's life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful. When I have questioned those who view my life as "hard," I hear about how it must be awful not to be able to see x, y and z, how I can't enjoy a, b, or c, and how I won't ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the "hard" part of my life? And that's the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a "hard" life based on physical limits. He wasn't a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored. It isn't that much of a leap to go from "They just reduced that man to nothing" to "Do they see me as nothing?" I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone's means to feel better about their own existence. *I* just got lost in that equation and used in the process. To answer my group therapist's inevitable question, "How does that make you feel?" Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad. Worthless. Scared.

Tuesday, July 2, 2013

Confession

...It's good for the soul, right? Recently every time I turned around, there seemed to be a person with a cognitive disability. Whether passing on a sidewalk, riding on the same bus or the person helping me in the store, there they were. Everywhere. Over and over. I am noticeably uncomfortable around people with cognitive disabilities. I never know what to say, do or think. Though not my finest trait, is my own discomfort a parallel experience able to teach me something about TABs? A useful distinction can be made between my feelings and actions. My unease comes from a complete inability to figure out the person in question. I have absolutely no way of knowing the nature of their disability let alone their functional limitations. This means I don't know if I should use simple language, speak slowly, ask questions to confirm understanding, repeat myself, or..... You get the idea. I don't know how to relate and that feeling leads to my get-me-out-of-here impulse. And, okay, I also have internalized a belief about people with cognitive disabilities behaving unpredictably. It's not that I would be hurt out of malice or intent. Rather, they might do something that would be fine if I could see but disastrous since I cannot. That increases my unease. And my actions? I take a deep breath, set my feelings aside and treat the person LIKE what they are -- A PERSON. My only unusual behaviors involve word choice and meaningful eye contact. (Believe it or not, you can do meaningful eye contact without working eyes. I can't explain how, but I've recently realized I can instinctively do it.) While I probably don't manage to entirely hide my feelings, I do my best to minimize them. Why? I know my reactions are based on stereotypes, misconceptions and ignorance. That is really the only thing distinguishing me from a non-disabled person who behaves sub-optimally around me. I recognize my feelings are not fair, reasonable or appropriate and take steps to remove them from my decision-making about behavior. I think my point bears repeating in a slightly different way. How you feel does not need to be how you act. My own vast experience around issues of disability makes it possible for me to understand my own internal reactions. Because most non-disabled people lack such a background, they don't have a framework to guide them. Can they be given one? While the bottom line about changing non-disabled people's attitudes and actions around disability comes down to education and exposure, perhaps the message needs to be different. If my primary motivation starts with a desire to treat the person before me like a person, then maybe non-disabled people need to first be made to recognize our shared humanity. That lesson must simultaneously come with the message that they probably possess little to no accurate information about disability. Unfortunately, when people feel ignorant, they tend to avoid the situation. I'm not sure how to convey shared humanity, ignorance and a necessity to not run away all at once.

Monday, July 1, 2013

Happy Blogiversary!

Four years. I've been doing this for four years. Though I'd like to say I've been a dedicated and consistent blogger, that is definitely not true. It this blog were to be represented by a geometric shape, it would have 3 sides of about equal length to illustrate the first 3 years, then a truncated line on the fourth, making it a trapezoid. Thanks to my readers for sticking with me throughout the insanity. I don't promise for sanity to suddenly blossom forth, but I do promise to share every last bit of the insanity. Look at it as a car crash you are not only allowed to gawk at but in fact encouraged to ogle.