Sunday, September 22, 2013

I Quit

I've decided to stop being bisexual. I am neither relinquishing my attraction to more than one gender nor am I going to cease mentioning that I am bi when it is relevant. I'm merely done trying to be a member of the bisexual community. The reason is simple: I won't be the kind of disabled person necessary for inclusion. I am no longer willing to follow these rules: A. Do not talk about my disability. B. Do not discuss my disability-related needs. C. Smile and be grateful for any bit of attention "lavished" upon me. D. Embrace or tolerate the "Let me help you, poor thing" attitude that comes with any aid. E. Allocate my disability-related needs to the realm of wants subject to the "whims" of people's "kind" hearts. F. Let prejudice behavior and policies exist without naming them as such. So, today as the bisexual community comes together to celebrate and raise its visibility, I am taking a giant step away from that community until I can be both disabled and bisexual at the same time. I have not made this decision lightly or in haste for it is only after years of working as a leader in my local bisexual community that I have come to this crossroad. The last three months, as I've taken time from that leadership to focus on health issues, I have watched as any acknowledgment of disability vanishes from the activities of the local bisexual community Then, too, there is the behavior of the bisexual community on the larger national scene. My comments on accessible practices have been snubbed. Requests that people think about accessible formats are not acted upon. Disability might as well be a planet in another galaxy given the amount of attention it receives. Finally, there are the individuals that compose the bisexual community. I am the eight-year-old child at an all grownup party that never conceived of a child being present. While this is not substantively different from how I am treated in heterosexual social situations, I would have expected more from a collection of people who routinely experience social isolation and discrimination. Today, more than nineteen years since I left my closet, I am not exactly returning to that enclosed space. I'm leaving the bisexual building and only going back for brief visits when my bi friends invite me. Maybe the whole "Be polite to guests" principle will apply. [If you are left thinking, "Wow, she's angry," then go read the previous entry for my perspective on anger.]

Beyond Anger's Reputation

Anger has a bad reputation. It is associated with such negative emotions as hate, jealousy, ridicule and disgust. It has been linked to outbursts of shouting, abuse, violence, rape and destruction. Anger is associated with ulcers, high blood pressure, and heart attack. It has no redemptive value whatsoever. I've been struggling with this assumption of anger as a negative emotion. While it can lead to less healthy and helpful feelings, is getting angry entirely bad? Anger might sometimes lead to bad behavior, but is that always the case? When TABs do something ridiculous, I feel angry. Talking about the event later, even when I use humor, my anger is apparent to many. Based on anger's bad reputation, my response to suboptimal TAB behavior has been called into question. "Jen, you are so angry. Why is that? It can't be good." Oh, really? Can't it? I live in a world where my value is underestimated and who I am as a person completely misconstrued on a routine basis. I am subjected to a lot of actions I dislike. Furthermore, my life is shaped by these attitudes and assumptions. (If nobody sees me as datable, then bottom line is lack of sex. I'm pissed about that.) There is an awesome quote by Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” In other words, getting angry at a world that sees disability as ours does is not a bad thing. Getting angry at sexism, racism or homophobia is not a negative state. It is healthy to perceive societal sickness and have a negative response to it. What is not alright is to be eaten up by the anger so that you become an angry person. It is equally undesirable for the anger to lead to health problems. Finally, if anger fuels bad behavior, it is not a good outcome. The question then becomes whether or not the anger is healthful or harmful. My anger about society's attitudes and behavior surrounding disability feels like a clear, cleansing presence. A person does something ignorant and on my good days, I become filled with a bright light. It burns away all the potential negative beliefs I'd otherwise internalize. To me, the "bad" response to TAB ignorance is to think the world is right. That leaves me feeling worthless, small and useless. It feeds depression, low self-esteem and a sense of pointlessness because if they are right that I am less, what is the point of life? Sucking up resources when you give nothing positive back in return seems wrong to me. Anger, though, clears out the emotional dark. Moreover, it fuels my desire to change the world. Anger is what makes me educate those I encounter with suboptimal beliefs. Anger keeps me trying even when it's the fourth time in twenty-four hours that I've been treated like I'm three. Anger keeps me writing and talking and explaining and trying to change the world. My passion –the thing I want to achieve above all other things in my life – is altering how society views disability. Anger keeps me trying to do this. It is motivation and feeds my hope that change will come. It doesn't weigh me down. It lifts me up. I can understand viewing anger negatively when the impact on the individual is harmful. How, though, is my anger doing me or the world around me harm? A fire can burn. A fire can be a warm, comforting presence. Who is to say anger isn't the same?

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.

Thursday, June 27, 2013

Grated Cheese

No, I'm not going to make some esoteric comparison between grated cheese and some aspect of disability. This is simply a story about grated cheese. To demonstrate that my stressed-out state heads more in the direction of depression than anxiety, I told my psychiatrist (not FabTherapist) about the following event: Getting ready to make an omelet, I went to the refrigerator to fetch the sautéed vegetables I had, the already grated cheddar and other useful ingredients. The Ziploc bag of cheese was not where I'd left it. It wasn't next to where I had left it. It wasn't anywhere that I looked. So, I sat down on the floor before the open fridge and sobbed. Inconsolably. My psychiatrist said, "Well, that's about your disability..." Um, until that very moment, I hadn't thought about it in those terms. I was just a person who couldn't find something and had a very intense, dramatic response. Blindness had nothing to do with it. The thought, "If I could see, I could find the stupid cheese," never crossed my mind. The psychiatrist, though, went there immediately. I find that fascinating.

Monday, June 24, 2013

Public Property

Pregnant women often speak about total strangers asking to touch their bellies. The social mores that keep people from requesting contact with the body of someone they do not know suddenly vanish in the face of that rounded mound of baby. Even worse, a significant number of people don't even request permission before giving a rub. I cannot come up with another situation, except maybe when it comes to "directing" a blind person, in which respect for bodily personal boundaries is ignored. Even when an individual in a crowd simply brushes up against a stranger accidentally, they apologize. This behavioral tendency has been framed in terms of the woman's belly becoming public property – as if everyone has the right to touch it the way they would a soft blanket on display at a department store. Attempting to explain a specific behavioral tendency that currently has me annoyed, I reached for an example my therapist might understand and came up with that of pregnant women's bellies. Aspects of my life are being treated as public property. Approaching a bus stop where I was to wait for a friend, I was asked by a man if he could pet my dog. I said no explaining that while wearing the harness, she was working. Apparently, he didn't like my answer because a tirade ensued. He started with the point that one little pet wasn't going to be a problem. I disagreed. He then said I was being cruel and was I afraid my dog would hurt him? I tried giving the complicated explanation about distractions and my safety. He said if my dog was that badly behaved, she wasn't trained well. Was I just not training my dog properly? I admit snapping at that point and saying something about having a dog previously that was highly distractible leading to me getting my nose broken. That did not penetrate his skull. About then, my friend's "Just walk away. He's nuts>" penetrated and I tried leaving. Really, I tried. I had to turn back when he told me I should "Just stay home." Excuse me? I don't think so. Let's just say it went south from there and he was really insulting. My point? This man treated me, my dog and my life as though he had a right to comment upon them. Everything about me had suddenly become public property. I was the politician whose life is open to public scrutiny. I was the actor living in the public eye. I was just lacking any of the compensatory perks either of those roles supposedly bestows. The worst part? People stood there watching and did nothing. Nobody said, "Hey, man, it's her dog. Leave her alone." In their silence, they were condoning his behavior. To paraphrase a mother-to-be's comment, "It's my dog. Keep your hands off!" And, I would add, your opinions to yourself.

Saturday, May 25, 2013

Responsibility Teflon

I know we've all met that person – the one who can somehow avoid responsibility for *anything.* It is as if they've been sheathed in teflon and nothing will adhere to it. Ever. The most drastic cases involve those who frame their lives in terms of things "done to them" that have resulted in bad outcomes. (Ever notice victim mentality is only present when it comes to bad outcomes?) More insidious cases exist in which individuals effortlessly float through life with nothing ever being their fault. They're just "following their hearts" or "honoring their feelings" or "not engaging in negative self-doubt" or "practicing self-compassion." In and of themselves, each isn't a bad thing when done in moderation. Some, however, have raised their use to an art form. In the process, they acquire Responsibility Teflon. I believe that perceiving me as amazing allows non-disabled people to don this same Responsibility Teflon. I've previously mentioned three ways non-disabled people conclude I am amazing – expecting less of me because of my disability, misunderstanding what it would be like if they walked in my shoes and lauding me for overcoming obstacles. Each is predicated on the idea that the "problem" is contained within me. She doesn't have functional eyes, so I should expect less. If I didn't have functional eyes like her, then I couldn't do that. She doesn't have functional eyes which would make that activity harder. It's all about my biological difference. The interesting part is that by making it all about my difference, non-disabled people have framed the situation in terms of my body, my abilities, my interactions, my defects. When it is all about me, Responsibility Teflon morphs into existence. A crucial factor, how our society functions, is being left out of the equation. My difference only becomes a problem when my world doesn't take it into account. Imagine if I lived in a world where my difference was accommodated by all information being conveyed visually, auditorially and tactilely. Would I be so amazing in that environment? Not really. I'd be simply another person going about her business. I'm certain someone is now thinking, "Yeah, and you would also not be amazing if you could just see." Following that line of argument, if all people were the same color, racism would disappear. If all people were of the same gender, sexism would vanish -- along with our species' ability to exist. Disability is a fact of human variation. Only when our society places meaning on human variation do we have things like sexism, racism and disability as individual defect. When a non-disabled person observes me crossing a street, they could think I'm amazing for being able to do that. They could also think that they participate in a world that doesn't take my need for auditory street signals into account. In the former, while they feel all warm and fuzzy for praising me, they are putting on Responsibility Teflon. In the latter, they are skating perilously close to assuming some accountability for the world they inhabit. You know, the same one I have to function in?

Tuesday, May 21, 2013

Amazing Revisited. Again.

Don't roll your eyes, but I'm back to that "amazing" thing. Again. This time with something new. Promise. I get to a doctor's office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I've thought about this behavior in two ways. I'm amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles. When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as "obstacle for blind person" in their heads. Because I have surmounted these obstacles, I become "amazing." This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual. I have less objection when amazing is about overcoming an obstacle. I'm not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven't cultivated or even simply requiring above average persistence. It feels far less dismissive of...me. Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They're not something you can discuss in terms of overcoming. So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It's like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here's your new bicycle. Ride it. Blogs New home

Tuesday, April 30, 2013

Magic Words

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant -- seemed to increase my social connections or generate more emotional intimacy in my life. Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He's made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I'm disabled, he not only believes me but understands why it happens. That's valuable in a way words cannot express. We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from "Blind, incapable, weird looking person" to "Smart, funny, intelligent woman." His argument is that people meet someone like me and suddenly don't know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am. I believe words have power. They don't have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don't take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process. Okay, there is something that has the power to derail things – shock. It's why some women with disabilities dress provocatively -- to shock potential dates out of the "not sexual" mindset. What would I need to do in order to shock people? Would that be in line with my personality? "Yes, I'm blind. Be careful. You don't want that to cause you to underestimate me. That would be a bad idea." The last sentence would be delivered with a slow smile. Not even sure I'm capable of a slow smile on purpose let alone uttering those words. If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It's not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it. Besides, if I noticeably aid people in coping with their discomfort, I've set a precedent. "You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too." Do I want to establish such a pattern? Yet, inaction will not change anything. Principles are great, but they don't make you feel loved and valued. Besides, women have needs. And hormones. and needs that go beyond hormones.

Monday, April 29, 2013

The Ultimate Excuse

At a symposium on disability, I attended a wide array of workshops, but the same theme kept repeating. "They don't know what to do," was related to how TABs deal with invisible disabilities, approach our sexuality, deal with us in public, offer or avoid giving aid and the list goes on. About half way through the day, it struck me -- not knowing what to do has become an all-purpose excuse with incredible power that simultaneously liberates TABs and imprisons people with disabilities. If I describe to a friend an annoying encounter with a non-disabled person, I am invariably told, "They didn't know what to do." This explanation is proffered as the conclusion to the conversation, seen as explaining everything and making further discussion unnecessary. Any emotional upset on my part should be assuaged by this rationalization. Blaming the non-disabled person becomes impossible for holding someone responsible who didn't know better is perceived as mean-spirited. Further conversation is made irrelevant for the explanation is known. Everything vanishes with six little words. Each time this happens, I feel as if I began a journey that ended five seconds later. It is a foreshortening of what should be a conversation or at least a chance for emotions to be vented. Though this happens frequently, each time I still feel caught between my unresolved feelings and social pressure to accept the excuse. The end result is the minimizing, silencing and dismissal of my experience and feelings. When a TAB uses the axiom "I don't know what to do," I find it even more infuriating. Admission of a lack of knowledge, in and of itself, is not a bad thing. What this confession of ignorance is allowed to achieve is problematic. Feelings of discomfort or fear can be dismissed, any associated guilt is alleviated and need for further action eliminated. This potent combination allows the non-disabled person to go merrily on their way. From my knowledge of disability issues, I have learned that TABs often feel uncomfortable when they are presented with the possibility of interacting with a disabled person. This unease can come from a multitude of sources – fear from having to think about potentially becoming disabled, concern that they will become entangled in a situation where they need to do something unpleasant, not wanting to admit ignorance, discomfort with an unusual appearance and... You get the idea. Instead of acknowledging or dealing with these thoughts and emotions, the person waves the magic want, "I don't know what to do," and – poof – all of that unpleasantness vanishes. There may still be residual guilt or a sense of obligation. "Someone really should be helping that person." The thought continues, "But I don't know what to do." Obligation, guilt and responsibility disappear. I have no idea why not knowing what to do has become an acceptable justification for needing to do nothing, but it has. I'm not certain if this is unique to issues related to non-disabled people confronted with disabled folks, but it is definitely true in this case. Finding out what to do is not contemplated as a potential course of action. "I don't know" becomes "I don't have to." What I find intriguing is that "So ask" never comes into play. My suspicion is that this is because people with disabilities are not seen as the ultimate experts on their own needs nor are they considered people capable of communicating. We are seen as our disability and that fact is all consuming of TAB awareness. Thus, "I/They don't know what to do," functions as an ending. No more discussion is needed. No action should be taken. Until that changes and "I/They don't know what to do" begins a journey to find the answer, a situation that could lead to better understanding is squandered. Ironically, "I don't know what to do" has no power when spoken by a person with a disability, except maybe to open the flood gate so suggestions as to how we can fix it drown us. If we don't know, we have to fix it. If they don't know, we have to live with it. Meanwhile, those who don't know in the first place move forward unimpeded.

Monday, April 22, 2013

Jen's Terrible, Horrible, No Good, Very Bad Day

Thing One The first incident wasn't all that bad – almost routine in fact. I was at a meetup type gathering and most of the attendees were strangers. About forty-five minutes into the conversation, I suddenly realized a segment of the group didn't realize I'm blind. (My guide dog, Camille, was out of harness at my feet.) "Um, you know I'm blind, right?" "Oh, no we had no idea." I could have scripted the next part. "You don't seem blind." There I go again not living down to low expectations of my behavior. Thing Two The next was far more ominous. On a "no destination" walk with my dog, I crossed a street and a man asked where I was going. I knew the street dead-ended somewhere, so I asked if I could keep going or not. His answer was not, so I asked if the street we were on met up with another street. "No, you have to go back a couple of blocks." Great. I got my foot caught up in a plastic bag that was in the gutter and had some trouble untangling myself, then I took off. About a block along my route, the man calls from behind me, "Turn there." or something. He had *followed* me. Followed. Thing Three I next ventured to the Transgender Day of Empowerment ceremony at the local LGBT center because a friend was receiving an award. Upon arriving in a very crowded auditorium, I was trying to convince my guide dog to find a seat, but she was as overwhelmed as I. A woman approached, introduced herself as Tracy and offered help, which I accepted. She took my arm in the hold you are taught for drunk people so they can't escape. I was dragged to a chair, but I let it go. Later I realized there was someone's jacket on the chair, meaning I'd taken someone's seat. I let that go too. The woman who had helped me was the M.C and immediately prior to concluding the ceremony, she said something like, "There's this young woman who I see in Hillcrest all the time." She kept going and it finally dawned on me that she was referring to me. I put my head down and began shaking it no rather emphatically. It didn't help. "I'm coming toward you, dear. What's your name?" I answered. "Now I want someone to volunteer to help this nice young woman get some cake." She didn't stop until someone volunteered. Thing Four I fled the room, hid out in the bathroom and then took my dog outside to relieve herself. I was headed back inside, reaching for the right door handle, when someone came out the left door. Fast. I was hit in the head. Camille let out two yelps. Commotion ensued with ice bags and emergency room nurses coming to check us out and people and more people and orders not to take the bus home and..... I handled part of it badly. Eventually, someone I knew gave me a ride home. Camille wound up at the vet, needed X-rays and was restricted to light duty until the bruise she sustained healed. Thing Five By this point in my week, I needed some fun. With enthusiasm, I went to my first in-the-theatre described movie. We got my headset from Guest Services -- my specific request for "the one for blind people." It didn't provide descriptions and my companion finally left the movie and went back to Guest Services where she acquired the proper headset. (I'd been given the one for Hard of Hearing folks.) Thing Six Finally, and most amusingly, dinner. I ordered a salad with peaches and caramelized onions. About two thirds of the way through my meal, I asked my friend, "Where are the peaches?" "There aren't any," she said, baffled. "Maybe these shriveled up things?" "Those are cranberries." I tasted one. They were. We asked our server and he came back saying I'd gotten the right salad just without peaches and he brought me a bowl of them. I said to him, "This is one of those things that happens to blind people. I just assumed the peaches were somewhere on the plate but I hadn't found them yet." I thought that was funny, and my friend was certainly amused. The server -– poor man --didn't get it.

Tuesday, April 16, 2013

Running With Scissors

When I throw my yoga bag over my shoulder, my guide dog, Camille, runs over and assumes harness position. Knowing we are headed to a place of endless pets and belly rubs, her tail wags with greater than average enthusiasm. We call this a learned behavior, concluding Camille is smart for predicting what will happen. A child carefully walks across their kindergarten classroom carrying a pair of scissors in the prescribed way. They have learned – probably because numerous adults have repeatedly scolded, coached and cajoled – that it is unsafe to run with scissors or to hold them the wrong way. We also consider this admirable behavior. I walk into my local grocery store betting myself how long it will take to find someone to assist me. Through experience, I have learned that help will not materialize quickly or easily. When a child learns safety procedures or a dog begins to accurately predict a routine, we call that good. When I anticipate an activity usually difficult will probably again be hard, I am making assumptions, thinking negatively and not giving people a chance. Is there truly a difference between the three things? When adult humans take the totality of their experience and apply it to a new similar event to forecast what will happen, we call it optimism if the predictions are good, and carrying around baggage when they are negative. If the prophecies are routinely downbeat, we are further labeled pessimists. Because we are creatures capable of reason, we try to overcome our negativity – to set down the baggage or remember that a familiar situation might turn out differently. In other words, set aside the statistically significant in favor of believing things will be better this time around. (This more positive attitude has been proven over and over to be healthier for us on a multitude of psychological and physical levels.) At Rolling Around In My Head, Dave Hingsburger wrote an entry about his own personal baggage. He articulates the fine line between the benefit of predicting based on past events and the ways baggage can interfere with our experience of a situation. To summarize, just because 95% of the time a situation unfolds in a specific way it does not mean you aren't currently in the 5% of the time version. Behaving like it is the 95% of the time event when it is the 5% occurrence is suboptimal. I began thinking about how the copious amounts of baggage people with disabilities carry is often used against us becoming a tool to minimize, silence and dismiss. People with disabilities acquire their baggage by living. One morning, I did not impetuously decide knitting in public would elicit excessive praise. Instead, it happened repeatedly, creating my voluminous luggage over time as I interacted with the world. Based on that, I might leave the knitting at home to avoid unwanted attention. Suddenly, I'm judged to be carrying unreasonable and unnecessary baggage, impacting my decisions negatively. (To be clear, even I think leaving the knitting at home is absurd, but not because of the reasons given. I think letting other's ignorance limit my actions is just that.... limiting.) This baggage can in fact provide a benefit in the form of lessons about how to approach a situation. Last time I asked a bus driver to drop me off at a particular stop and didn't pay close attention, problems developed. That part of my baggage helps me remember to remind drivers, even if I might be perceived as annoying. The label "nice" is not worth it if I end up in an unsafe situation. Sharing this acquired knowledge with others often backfires. I'm not seen as learning through experience and being prudent; I am perceived as holding one person responsible for another's actions. "How do you know this driver will forget about your stop?" In fact, I don't know. I just know that if they do forget, it will suck to be me. I do agree with Dave that determining if you are in the 95% situation or the 5% one and not treating one like the other is key. Therefore, if a driver is announcing each and every stop, I don't offer any reminders of my request. The thing that bothers me the most, and the thing I cannot prove through logic or reason, is the fact that my same actions done by a non-disabled person would be perceived differently. I have baggage. They're being smart. Leveling such value judgments at the same behavior done by different people is the first step in employing social control. It isn't far from "Why are you behaving in such a negative manner?" to "Nobody likes a negative person," to "Your bad attitude is why nobody will be friends with you." Do I sometimes behave badly? Of course. Is it sometimes because I used my experience as a person with a disability (baggage) and judge things badly? Definitely. How does this make me any different from a person without a disability who uses their experience gained over time? It doesn't. Why, then, is mine baggage and theirs learning? I'm just running with scissors, cutting myself and using more care the next time around.

Tuesday, April 9, 2013

Reason's Vanquisher

In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled. I can then offer explanations and arguments to counteract each item. My skills are sufficient to convince you that I have worth. Now if it would only work on myself. Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides. My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield. The depression I'm experiencing because of current life stress and mental health issues definitely saps reason's strength. It does not, however, generate the need for reason to be so powerful. the might reason would need to surmount the negativity is defined by the power of that negativity. What is responsible for negativity's capacity to overpower reason? Society in general and the individuals that act out its beliefs in particular. The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities. Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability. Refusal to accept a "No thanks" to an offer of help illustrates devaluation of the disabled person's judgment. Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves. Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power. A lot of power. Counteracting them takes a significant and constant force of will. It is a battle people with disabilities engage in each and every day. It is a war without an end in sight where victory is never possible because the "enemy" has an endless supply of assets. There are a lot of battles I'm currently fighting and they are consuming vast resources. I have nothing left to wage war against the societal devaluation that comes at me without end. Words and deeds matter. Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day. And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day. The negativity you put out there might turn on you down the road. Do you want to battle it?

Monday, April 1, 2013

Acquiring Objectness

I and other disabled people have a unique talent. We can transform ourselves into objects. Here are some examples of people instantaneously morphing into things. When flying, I need help transferring from one gate to another. This is not true for all blind people, but it is what I do. The airport provides someone to do this and they are the people who also push passengers in wheelchairs. To avail myself of this help, I must wait until someone shows up and usually until the plane is largely empty. If I were waiting along with a man who uses a wheelchair and an older woman needing special help, likely as not you will hear one flight attendant call to another, "How many wheelchairs do we have?" Now, to be clear, they aren't asking how many wheelchairs are waiting outside the plane. They are looking for the number of people who need assistance. I get that they are using some sort of short hand, but really? They could ask how many escorts they need or even assists. There are ways to talk about me without me having to become a thing. Sitting on a bus, I listened as the driver tells everyone waiting to board, "I have to unload a wheelchair." Apparently I took snarky pills because I said, "Um, person?" He didn't reply. Finally, this happened to a friend who ordered a coffee at a local Starbucks. She did tell the barista her name, so I can't think why they then wrote on her cup "wheelchair." Seriously. It said, "Wheelchair." Was she supposed to pour it on as some kind of new lubricant? Clearly the chair didn't pay for the coffee...

Thursday, March 28, 2013

What Does It Take?

I'm convinced there's some unknowable and Mysterious Act that if I only discover and do, I'll get the support I need. Telling people I'm not alright hasn't worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn't elicit a single expression of concern. I'm beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, "What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?" What ever happened to unselfish compassion? Loving someone enough to do what they need even if it's inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I'm not talking about a one-shot deal here. I'm talking about consistently over a period of time being there for someone *because someone has to*. Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That's why people have a collection of friends, not just one. As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn't look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention. I don't want attention. I want support. They are not the same thing. If they were, then I'd be thrilled when people pour on the praise for my mundane "achievements." Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous. Instead, when I seek support, I get things like: "Jen, I can't even imagine dealing with what you deal with, so I don't know what to say to you." How about this: "I can tell you are truly upset and hurting. What can I do to support you while you deal with it?" Now was that so hard? "Jen, you are so inspiring. How you deal with what you deal with amazes me." Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful. "Jen, I can't watch you be so negative. It's too painful to me." Now the other person's pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible? "Jen, I know it will be alright." Great. Meanwhile, I'm in pain, but it has been dismissed as unimportant because it won't last forever. By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I'm fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

Monday, March 25, 2013

Don't Watch!

There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I'm simply trying to "hear" what's going on. Passers by may stop and ask or offer assistance -- an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of "No thanks. I'm good," can result in problems. People step back and *watch*. I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me. So, there I am, trying to sort out a mobility issue, while somebody hovers. It's creepy. It's annoying. It's rude. And, if I were sighted, it wouldn't be happening. Most significantly, it shows a profound disrespect for my own judgment for if I've said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I'm an exhibit at the zoo. (I am not an animal in the monkey house. Promise.) There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying "No thanks," can be me granting myself a learning opportunity. Those are good for me, right? I suspect people's motivation to stand and observe usually comes from a good place. They don't want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It's yucky. And did I mention creepy? So, I am declaring anyone who walks away when I say, "No thanks," off the hook if I turn out to be wrong and break a body part. Absolution is yours. But I know this won't be enough. Here's a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me. Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. "I don't know much about how blind people navigate. I don't know how you would handle x situation which is making me unreasonably concerned." Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can't guarantee the response. I can say that it would feel better than the hovering. Much better. I encourage you to go forth and try it, then come back and leave a comment. I need data.

Thursday, March 21, 2013

Through My Eyes

When I meet a TAB (temporarily able-bodied) person, they are not the first, second, or even third member of that community I have encountered. Having grown up in non-disabled society, I am very familiar with what it means to be non-disabled. I know about mortgages and kiddie carpools and working moms and stay-at-home dads and midlife crises and divorce and being elderly. I have been steeped in non-disabled culture to such an extent that it is second nature to understand the lives of the non-disabled people I meet every day. I don't need to have lived the experience to relate to it because of my massive exposure. I am quite often the first disabled person a TAB has ever met. That individual has no frame of reference, no vast exposure, no years of observing other disabled people to help them relate. Instead, TABs rely on other means to understand such as imagining what it would be like if they were blind. Unfortunately, lacking any knowledge of the specialized training I've received or years of experience I've gained, TABs can create a very skewed impression of what my life must be like. They then call upon this inaccurate perspective to attempt to comprehend, evaluate and judge my life. These efforts fail miserably resulting in things like: "Wow, you are so amazing. I can't believe a blind person can..." "I'm so inspired by you." "It's such a shame you can't see." "You must not be totally blind because you just..." "You can't see, so let me do that for you." People can become very entrenched in their beliefs, assuming thirty seconds of imagining what it would be like to be blind is more accurate than the reality I--a blind person--describe. I've had arguments. Lots of them. TABs thinking they understand what it's like to have a disability better than someone *with* that disability are not limited to imagining walking in our shoes. Basic beliefs about how the world works can inform reactions. Those who think people are essentially good have trouble comprehending someone being unkind to a person with a disability. Customer-service people tell me to ask my neighbor to read my mail believing they would read the mail of their theoretical blind neighbor. Folks who believe our social-welfare system is adequate and flourishing act like I have help coming out of my ears to accomplish any task I want. How a person sees the world impacts how they see my life. I'm discovering this phenomenon of "I know better about you than you" is more insidious than the smell of skunk spray. From strangers, it is somewhat excusable for they have little data to use besides their own imaginations, view of the world and some dimly remembered after-school special. Friends, however, should in theory know better because they have evidence gained over time both through observation and direct conversation. And yet, often friends of years fall back on this attitude of knowing better than me what it is like to be me. This phenomenon is not unique to the disabled versus non-disabled populations. Men think they know what it's like to be a woman better than women. "Oh, honey, that guy in the hardware store wasn't being condescending. You're overreacting." Those outside a marginalized group often dismiss what a member of that marginalized group conveys about their experiences substituting their uninformed outsider view for that of an expert. When, exactly, did it become reasonable, let alone smart, to take the opinion of a lay person over that of an expert? I just lost a friend because of this. He firmly believes that his assessment of how I'm reacting to my current emotional turmoil is somehow more valid than my own. He's never lived through any of the things I'm struggling with, but he is certain it's perfectly reasonable and possible to handle them in a better way. I refrained from saying, "How about you try and let me know." Blog's new home! People Aren't Broken

Saturday, March 16, 2013

The Culture of Silence

A friend used the phrase 'a culture of silence' to refer to the normative standards of behavior, cultural beliefs, individual attitudes, social structures, and societal barriers that dissuade marginalized people from sharing their experience. Women keep quiet about sexual assault to avoid the blame and shame attached to speaking up. Transgendered people don't discuss their gender identity out of fear, at best, of being labeled "freaks." Poor people stay silent about their impoverished state so as to not be labeled a slacker, told they should just go find a job, or be pitied. In contemplating all the times I swallow my words, I have begun to wonder what part of my silence is tact and what part subtle duress? Then I came across a news clip about a student with developmental disabilities who was bullied by her teacher. What shocked me was not that such events transpired for I know such situations are common. I was surprised that the parents went to such great lengths to prove their child was not lying. Educators relied upon the

Thursday, March 14, 2013

Service Models

Whether governmental or private, agencies aiming to help people function on the principle of doing the greatest good for the greatest number. Whatever their niche, their goal is to provide services and support to as many as possible. It becomes a formula composed of maximizing benefit while husbanding resources all targeted at the typical person trying to be served. Thus, support that does not attract the target population is discontinued and services not utilized by a significant number of people are viewed as wasteful. Think about the nature of people with disabilities as a population. Because of lack of access, we often are not engaged in community life. This lack of visibility means our need for access isn't obvious or immediate. Thus, there continues to be a lack of access and we remain undetectable. Even when we have full access, our presence is still in the minority, especially when we are subcategorized based on our disability-related needs. Because Deaf people need one thing and blind people might need another, we become separate items on a to do list and different line items on a budget. "Full access to all people with disabilities" becomes meaningless to an agency head when the reality of our differing needs factors into program development, planning and funding. To meet the needs of our seemingly small population, the expenditures of effort to become educated about how to accomplish it and the money necessary to achieve it are high. In contrast, the payoff in terms of benefiting a few people seems small. When the typical service model meets the needs of people with disabilities, things do not turn out well. Why would an agency expend significant resources to benefit only a few individuals? How can continuing a program that only serves a few people be justified? How do you overcome the seeming illogic of providing services when there is nobody there to partake of them? I have been confronting these issues for quite some time as I attempt to convince my local LGBT Community Center to make some changes that meet the needs of blind and visually impaired people. My basic plea, "I know there aren't a lot of us running around here, but this still matters" has not penetrated. They are an agency engaged in serving a specific population trying to make scarce resources stretch to meet that community's needs. Why bother with the needs of 4 people that will take away from benefiting thousands? Within the parameters of the service model they utilize, they are entirely right. In the past year, I have also worked with my local Pride organization. Theoretically functioning within the same service model, they have taken a different approach. "It's important." While far from perfect, there is at least a desire to provide the services disabled people need so that they too can fully participate in and enjoy Pride. The striking disparity of the two experiences has been heavy in the back of my mind. The conclusion that finally emerged is that those ingrained in the service model I've described do not suddenly look up one day and see the shortcomings of it. Until they do, there is nothing you can say or do that will convince them that inclusion of one disabled person is important in a way that exists outside of resource marshalling, the greatest good for the greatest number, and the bottom line. The funny thing is this: service agencies are there to help people. The bottom line is supposed to be the business of corporations and accountants. When did the business of helping become the business of exclusion, dollars and cents?

Tuesday, March 12, 2013

Inclusion Door

To my ongoing frustration, the theme of encountering ablism at every turn has not ended. One trend weaving its way through my experiences is the idea that entities make changes and provide accommodations "when someone asks for them," where someone actually means multiple people at various times. This leaves me with a question: Should you be required to knock repeatedly before the inclusion door is opened?

Thursday, March 7, 2013

Riding The Bus With My Dog

Ever wonder why bus drivers need to announce *every* stop? Here's a great example. To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet's office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination. The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake. She didn't announce my stop nor did she stop. When she announced the stop after mine, I called to her, "I wanted 39th?" I think her response was simply saying she'd gone past. When I got off, I inquired, "How many streets back is the stop I wanted?" "You should cross the street and take the other bus back," she replied. "Don't have time. Do you know how many?" "Two or three maybe. Sorry," was her answer, with the apology covering either her lack of knowing or her mistake or both. Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit.... concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things. I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro. And then we had to do it again on the other side of the overpass. Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver's mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.

Monday, March 4, 2013

Ears

I welcomed the new year in with double ear infections – both sides, inner and outer. First, in defense of infants the world over, I have only felt that intensity of pain once before when my appendix was about to rupture. The ear pain had me curled in a ball on my living room rug at 2:00am begging the universe to make it stop. Sobbing. Loudly. Babies, in my opinion, should scream louder. Along with the pain, I lost significant amounts of my ability to hear. I could hear someone on the other end of the phone, but not someone standing next to me. I stopped being able to perceive the noise of my fridge for about three weeks. I was unable to walk in a straight line inside my own home. I couldn't hear if the pot of water on the stove was boiling or not. As you might imagine, this was a life complication. Once the pain was under control, it took about 48 hours for my brain to say, "Hey, we can navigate the outside world. Camille's good at her job. You should be able to hear audible crosswalks. AS long as you only go to places you know....." Around then, I stood up and the room started spinning. "Okay, maybe not if I'm experiencing vertigo." Once the dizziness passed, that's exactly what I did – went out and navigated familiar places while my hearing was limited. I'm still stunned at myself. Not amazed. Stunned. What attitude or approach achieved this ... result? This is a new adventure. Wonder what it will be like. Wonder what I'll learn. I credit this mindset to my December reading of Crashing Through written by Robert Kurson telling the real life story of Mike May's adventures in going from totally to legally blind. Perfectly content as a blind man, he was presented with the unexpected possibility of regaining vision with a new medical procedure. The book chronicles his decision and subsequent experiences. To boil it all down, he did it to – excuse the pun – see what it would be like. I was presented with a perceptual change and decided to embrace it as an experience. It went well. two months later, I have most of my hearing back, but they aren't sure everything will return. The nuanced auditory input I use for things like "Where did that thing land when I dropped it?" is effected along with trouble discerning traffic patterns, identifying the location of an open doorway and a few other things. I'm pretty much done sucking all the learning and experiencing out of this adventure. Fingers crossed that the steroids work.

Saturday, March 2, 2013

When There Are Words

It's odd how having words to describe a situation changes how you relate to it. The mess going on inside of me hasn't actually morphed into something that is comprehensible. Having words, especially ones I can share with others, feels like the same mess is encompassed by some sort of boundary in which it resides without spilling over. I've already used many, many words to describe the portion of the mess associated with my feelings of isolation and lack of human connection. I now have a way to describe the other portion related to my Post Traumatic Stress Disorder (PTSD) and described in recent entries. I experienced childhood medical trauma that led to adult onset of PTSD. With therapy, I was able to manage the symptoms and make inroads into recovery. For me surgery of any kind bares enough similarity to my original traumatizing experiences that my brain tended to react as if it was trauma. Over a two and a half year period, I underwent seven surgical procedures and with each the PTSD symptoms were less – a net gain in PTSD recovery. Then, I was traumatized by events surrounding a surgical procedure. At the time, I did not respond significantly to the trauma aspect, instead suppressing much of the emotional response. With yet another surgical procedure on the immediate horizon, there has been a resurgence in PTSD symptoms including nightmares and triggering of flashbacks and body memories. Words. All neat and clean. I'm slightly worried that my ability to convey them in a calm manner is in fact me further suppressing my emotions and that what feels like containment is in actuality minimization of the real trauma I experienced. Guess we will find out.

Thursday, February 28, 2013

Misery, Desperation and Nightmares & Dreamscapes

From Charles Dickens we move on to something reminiscent of Stephen King. After the events in A Tale of Two Extremes, I had two doses of anesthesia and from a PTSD perspective, everything went well. In fact, by the third procedure in October 2012, I was starting to feel like it was a routine event. Totally and dramatically wrong. A failure of imagination as well as not attending to multiple warning signs are the only explanations I have as to why I was .... blindsided.. First, there was the orderly who thought I could see and was surprised I was sighted. Then there was the O.R. nurse similarly uninformed and also not aware of my lack of a nasal airway. There was then a floating nurse who thought I could see. Three in a row should have raised my suspicions, but I explained it away as a lack of charts being read with any care at all. Next there was the anesthesiologist who I'd encountered before. He wasn't my favorite, but nobody can live up to AnesthesiaSaint mentioned in the previous entry. However, when he asked what music I'd like to hear, I told him and he IGNORED ME, I should have paid better attention. When he continued to disregard most of my requests for how I wanted him to interact with me, there should have been red flags doing the cha cha in my head. Not knowing I'm blind is one thing. Totally ignoring what I want is another case altogether. I came out of anesthesia and was told, "We are moving you to your bed now." They didn't give me a direction, which is typical for people who don't know how to behave around a blind patient. I went to ask, "Which way?" and discovered I couldn't talk well. There were sounds I was unable to make. I tried asking the question in other ways, but was more or less ignored. So I tried all the nonverbal communication skills I know, including trying to fingerspell, which is when I realized my right arm was fairly numb and unresponsive. I started getting pretty agitated. Nobody really did much to sort it out. I was the man having the breathing treatment who was shot down when he tried to get the reassurance he needed. My brash proclamations that I had the skills to handle such a eventuality crumbled in the face of medical staff unable to notice that I was communicating. Finally, I managed to get across a need for pen and paper because I found ways to express the concepts using sounds I could utter. I demanded my doctor. It took extreme insistence to get him. My awesome, amazing TracheaDoc was not prepared for the situation and handled it suboptimally. He had no idea I had just experienced enough trauma to take my PTSD from "mostly managed" to "completely out of control." That's because doctors aren't educated on such things. Unfortunately, in this one way, he turned out to be like other doctors. Guess he's not superhuman. He did share one crucial fact – the paralytics used in surgery hadn't worn off and my vocal cords were effected. Also, the blood pressure cuff had cut off my circulation. I pretty much cursed him out saying he'd better be right or else with a few tears managing to escape. You know what? I'm extremely proud of myself for not losing it more than I did. The circumstances of this situation could not have been better for triggering my PTSD if I'd picked them myself and went beyond anything in my most vivid nightmares. If the events had been described an my opinion as to my probable reaction sought, I'd have predicted screaming, yelling, throwing things and behavior likely to get you sedated and put into a padded room. Instead, I had a fairly understandable response. Or, well, to me understandable. I don't think the sighted medical staff had that perspective. I'm concerned about what my medical chart now says. I'm looking at surgery in the next month and the thought is... not pleasant. People Aren't Broken is our new home!

Monday, February 25, 2013

A Tale of Two Extremes

It was the best of times. It was the worst of times. Or, well, at least a striking dichotomization of the medical profession. In September 2011 to deal with the ongoing saga of my tracheal stenosis is, I had minor surgery. A procedure with which I am familiar, I still somehow experienced a vast amount of related stress. In fact, a surprising resurgence of my PTSD caused me to rethink a prior conclusion that it’s under control. Then we had a power outage that pushed the procedure date back five days, so by the time the event arrived, I was a bit overwhelmed. The first speed bump in the day came when I was told the gastroenterology folks concluded they needed to do a procedure on a different day to assess how my stomach might be contributing to my stenosis, potentially requiring some sedation. Overwhelmed as I was, life became entirely black and white where probably meant would and since anything between fully alert and fully knocked out is terrifying for me, the thought of the whole thing unglued me. There are some things you might not consider unless you’ve been a blind person in multiple medical situations. Typically, medical professionals do not know how to keep you informed of events around you. Extreme amounts of focus to track events from the data you can gather help, but any kind of sedation destroys essential concentration and memory leaving you wondering what’s happening as you fade in and out. In case it’s not obvious, that kind of disorientation plays badly with PTSD and is why I either have no drugs or get totally knocked out. You also cannot be certain of privacy, who has entered your designated space, or where your nurse went. Therefore, when I was told about the GI decision, I couldn’t curl up into a Miserable Ball of Jen. With hindsight, I know that was for the best, but at the time I didn’t have such clarity. Then the pendulum swung to the opposite apex of it’s arc as I went into the O.R. Unlike other times, I ditched stoicism and made my mental state clear. Everyone, and the room was populated with people I knew, was great. They did two things exactly right: casually kept me aware of what they were doing and engaged in distracting conversation. It was fine. I was fine. Never thought I’d experience that. Waking in recovery, I needed oxygen. Without a nasal airway, a mask is the only option. It’s also the most upsetting medical thing I can imagine. But, wait, the Anesthesiology Nurse had a flash of brilliance when she cut a whole in a Styrofoam cup and I used that like a funnel to direct the oxygen at my face. Personally, I’m nominating her for sainthood. Soon, though, I was smacked down to earth as I listened to the plight of my neighbor. As he came to consciousness, a breathing treatment was being administered. Unable to clearly speak, he still had questions. As someone who wakes up with a few of her own, I could empathize with his situation. I guess Recovery Nurse couldn’t because she politely then not so politely ordered him not to speak. There was no effort made to communicate in another way -- no pen and paper offered, no yes and no questions asked, and no reassuring words to explain how his surgery went. Nothing. From experience, I know how to gesture for pen and paper. I also (thankfully) can write without looking. In his shoes, I could have gotten what I needed to feel safe. Most people do not have my vast experience or coherence upon regaining consciousness. In this man’s Johnny, I would have been utterly petrified. I’m starting to wonder if my experiences with the institution of medicine as a blind person is simply the result of a continuation of cluelessness. It’s not so much that they know what to do with non-disabled folks, but fall short when it comes to blind people. They just don't know what to do with anyone. The notable exception Is obviously the Pulmonology folks and Anesthesia Saint who apparently were given empathy and clue shots along with their new employee orientation. People Aren't Broken

Friday, February 22, 2013

Believe Maybe

A couple of weeks ago, I read Frank Deford's "An American Summer" which tells the story of Christy, a fourteen-year-old boy who moves to Baltimore the summer of 1954. Almost immediately he meets Cathryn, a twenty-three-year-old who contracted polio six years ago and now lives in an iron lung. It is an unlikely connection that leads to an extraordinary relationship. At one point, Cathryn is trying to convince Christy to do something he doesn't believe is possible. She asks, "Can you believe maybe?" The distinction she makes between what we believe and what we believe maybe is effort. If I believe maybe there's a God, then I still have a question to answer and thus work to do. Believing there is a God pretty much settles the matter. I have been struggling with the concept of hope for quite some time. It first became an issue when I realized hoping I'd get healthy was causing me to live for tomorrow and not enjoy today. Then hope got all tangled up with the lack of dating in my life. People kept telling me that if I didn't have hope that I'd meet someone, then I never would. I argued hoping for something that was statistically unlikely was the road to insanity. After that, my life began to completely come apart at the seams and I was devoid of hope that it would get better. Our hearts are designated the home of our emotions. Over the past four years, I've learned much about following mine and so far it hasn't caused me to do something I regret. In fact, my regrets tend to stem from the times when I don't or where circumstances won't allow me to listen to what it says. My heart was devoid of hope. It contained wishes, dreams and desires without expectation to tether them to reality. I think hearts learn, shaped by the negative and positive re-enforcement of life experience. My heart was taught not to hope because nothing good ever came from it and many let downs happened. What has hope done for me lately? Caused oceans of tears. So, I'm done with the idea of hope for now. We're on a relationship break. in its place, I'm entertaining the idea of believing maybe. It seems far more suited to me for it allows acknowledgment of things that feel unlikely while not summarily dismissing the possibility entirely. It allows for effort, but it doesn't have the black hole effect of trying and trying and trying and then watching all your trying vanish into some unreachable place with nothing to show for it. Instead, the trying is tempered by knowing it might be for naught or it might work. When I think, "I believe maybe this mess my life has become can be fixed," I do not hear from my heart, "Bullshit." I hear an echoing "Maybe?" Blog moving. Bookmark or otherwise get yourself to People Aren't Broken I mean it. :)

Monday, February 18, 2013

Apples and Oranges

A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late. As he put his hand on my upper arm, he intensely said, "You need to sit and really listen to the new CD. It's all about that." I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn't connect. It wasn't that the music lacked emotion or that something didn't quite come together. It's a great CD and the artists in question conveyed their message well. I just couldn't identify with it. At all. I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn't I hear it? It took five months for me to figure it out. They're singing about apples while I'm trying to juggle oranges. The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one's thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn't quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it's core, the music is about inner struggles to overcome internal obstacles. My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it's solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised. Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I'll meet people. That's all within my control to fix, right? What happens when you do all of that and the only result is frustration and a bone-deep belief that it's not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn't change all that much. In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness. So, while the musician was kind having the best of intentions to offer me solace, it didn't work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate. Blog. Moving. Soon no new here. Plan. People Aren't Broken

Hope

While introducing a song entitled "Hope," a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it. He's not wrong, exactly. He's just talking about some subset of people to which I do not belong. They are folks whose "hard times" can be gotten through with the right attitude and sufficient effort. I've watched it happen, so I know attitude and effort work for many. I'm just not one of them. Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can't morph someone's ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought. Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes. Perhaps the key here is what the musician meant by hard times. I'm fairly certain he wasn't referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken. What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people's ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I'm left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful. Case in point. I'm dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul? I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I'm trying to peel oranges. This entry will elucidate Apples and Oranges So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced. Blog. Moving. People Aren't Broken

Thursday, February 14, 2013

McSteamier Does Appearance

Grey's Anatomy has replaced McSteamy with Mc (in my opinion) Steamier and thus one plastic surgeon exits and another moves to the forefront offering me more appearance-based storylines to critique. Aren't you just jumping for joy? On "The End is the Beginning is the End" (Season 9, Episode 11), James, a sixteen-year-old teenager, comes for his sixth surgery to address what he refers to as his "weird" appearance. Everyone around James cringes to various degrees about the weird label further substantiating the point I made in Grey's Anatomy of Appearance. Those of us with the weird face can accept it and the social consequences with far more equanimity than those around us. Why is that? And that's not a rhetorical question. When The Hot Girlfriend visits James, McSteamier seems perplexed and James offers an explanation that goes something like this: McSteamy told me surgery was going to get me only so far so I had to develop some moves to get anywhere with women. He said his moves wouldn't work for me, so I had to come up with my own. I blind them with my personality. This brief explanation took me to the heights of elation only to drop me to the depths of infuriated resignation. My personal experience of plastic surgeons is that they bank on all the negative consequences of having a weird appearance in our society – isolation, rejection, scaring children, lacking dates, getting treated like you're contagious and... Then they offer you the infallible remedy – described in as little detail as possible -- to vanquish the horrifying fate. It's an approach of extremes selling you on the described course of action better than any ad campaign could achieve because no convincing is necessary that looking weird has lousy consequences and we've been taught to believe Medical Gods have all the answers. After all, they became doctors to "do good" and no self-interest or ego is involved in their proclamations. They only want what is best for us and are going to deliver it. At no time in my life has anyone let alone a doctor said, "Surgery will only get you so far." I'm actually a little terrified to even contemplate how that might have altered events. Would my parents have been so persuaded and determined that I needed to be fixed? Would I have been such a willing sheep? Would such an honest perspective coupled with identical experiences somehow left me with less emotional scars? Of course Grey's Anatomy's writers then made me furious by implying the right behavior (moves) could overcome a weird appearance. Really? I'd love to attend the workshop that taught me that particular set of skills. Replacement of my biological eyes with prosthetics altered my appearance in a manner socially perceived as an improvement. Since then, I have noticed significant behavioral changes in those around me. Strangers engage in innocent flirting. Children's questions have morphed from "Mommy, what's wrong with her?" to "Mommy, why is she using that stick?" Dates haven't suddenly begun raining from the heavens, but stranger discomfort has drastically decreased. However, while under anesthesia, I did not receive an infusion of improved social skills nor a transplant of dazzling moves. To me, this experience argues that how I look has more power to impact others than anything I say or do. I looked weird. I look a little less weird. People behave accordingly. In the end, Grey's Anatomy may have mitigated the impact of it's "If you have the right moves" perspective. With all his blinding personality, James still said, "Looking less weird would be cool." The blog has a new home at: People Aren't Broken