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?

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

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?

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

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

Lackadaisical Me?

If you are doing therapy "right," the work of it doesn't solely happen in the fifty minutes you sit in an armchair and spill your guts. To encourage forward momentum, some practitioners assign homework. Mine has not taken this step, yet I seem to be an entity that once in motion continues. The reason I sought out a professional was my utter unhappiness with my life, specifically the lack of emotional intimacy, the absence of a collection of people who support me through the rough patches and resilience within myself to make it through hard times. I felt alone, drained and completely unable to figure out how to fix it. I lay the blame for the first to on the doorstep of a society that perpetuates untrue beliefs about disability that form the burier between me and other people. I sought a professional to help me decide if I had to accept that or if I could change it. Somehow. I wasn't optimistic. Slightly over two weeks ago, I had a painful conversation with a friend that resulted in a mutual decision to be less in each other's lives. It left me with one local friend who I can count upon no matter what. I thought I'd be crushed by this fact, but I've been oddly curious. I want to know what happens next. It also appears to be contributing to my growing feeling that I must clear out my life in order to move forward. Anything that isn't working is vulnerable to being eighty-sixed from my universe. And when I follow that urge, I feel good about the consequences. At least the immediate consequences. I have serious concerns that I will resolve what I need to in therapy and look up to find my life is gone making me more alone and isolated. But if therapy works, won't I have replaced the things that aren't serving me well with things that are? This clearing of the decks is a way to make the space and free up the energy to build something better, stronger and fulfilling, right? Right? The weirdest thing has happened. I no longer can even write a sentence about all this that contemplates failure. "When trying to build something better fails" literally feels like a lie. I don't think it's a healthy, optimistic perspective so much as faith in a non-disabled, never-treated-a-disabled-person therapist I've found. That's just unfathomable. And possibly a very bad idea. Oh well. And that's even stranger. I actually don't care if I'm making a mistake because it doesn't feel like a mistake. It feels like I'm a combination of an adventurer and mad scientist. "Let's see the consequences of these actions and what adventures they bring." What is going on with me? Anyone? Note: The blog is moving! People Aren't Broken

A Hostile Letter to the Non-disabled

Dear Temporarily Able Bodied person, I have recently gotten in touch with my anger toward you. It isn't enough that you feel sorry for me. And it isn't enough that you assume my incompetence. It's also not enough that you expect me to be gracious and grateful and polite no matter what you say or do. It's even not enough that you consider my fate worse than death. I could live with all that if necessary. Unfortunately, you seem to insist upon engaging in beliefs and perpetuating a society that literally keeps me from what I want. You, in the form of this society, even taught me that it is what I should want. This world you've created teaches little girls to want families and encourages grown ups to find their life partner. At the same time, you school everyone in the fact that I'm helpless, dependent and pitiable. I should want home and hearth. I should just be fine without ever actually getting it. When it comes to accommodations like accessible formats, audible crosswalks, and Braille on elevators, I can at least comprehend the obstacle created by having to take that extra step, to make the effort. You need to think that someone blind might want to read the menu, cross a street, or go to the eighth floor of a building and do something about it. The additional thought and exertion necessary is, well, work. What effort or energy does it take to stop feeling sorry for me? To cease expecting my politeness in the face of insult? To desist in assuming I'm not competent? There's no effort. It's not a Herculean task. It's a simple act of not.... Instead, these negative beliefs become the armor you use to protect yourself from the distress of my existence making it easier to feel pity rather than trying to understand, to offer supposed compliments in place of questioning the underlying insulting assumptions and to dismiss me as a substitute for perceiving my value. It's more comfortable when you don't actually perceive me as a person. My personhood comes entirely too close to you having to consider what your life would be like if you became me. Mustn't contemplate that possibility. So, to make your life all comfy, safe, and easy, you keep me from what I want. You make me an undesirable mate and nothing I say or do can in fact remove that stigma from myself. I have Hester Prin's scarlet letter tattooed on my forehead only nothing I did put it there and nothing I do can remove it. My anger at you knows no bounds. I'd scream, but I'd become hoarse long before I had even begun to express my fury. Becoming a hermit would work except for the fact that modern society makes us all interdependent – a fact you conveniently forget. I only wish I could morph my personality into one that would welcome your pity, low expectations, and devaluation with gratitude because at least then it wouldn't add to my misery. Instead, I get to be full of rage in a way beyond my ability to express and beyond my ability to change. Ironically, frustratingly and ridiculously, the fixing of it is left to you who could care less that your unthinking assumptions deny not only me but an entire class of people something you proclaim necessary for happiness. I didn't choose disability to be a part of my life, but I did do everything in my power to make my life work. What, exactly, have you done except get in my way? Respectfully, Jen NOTE: This blog is moving, but I'm giving you time to adjust before I fully transition to the new site. Point your browser or whatever to People Aren't Broken

Brutal Honesty

Sometimes twelve days on a lake with your family and guide dog who suddenly acquired gills is exactly what you need to refocus. I left warn out from Pride and wondering how I should change my life. without consciously even thinking about it, I came home knowing what to do. My subconscious is so smart. I need to come clean about why this blog has been so silent. It began as a series of infections, then the habit of not writing took over, or so I thought. In actuality, I was avoiding emotional "stuff." Writing this blog with the frank honesty I want means digging in my feelings and uncovering what is underneath. Exposing buried emotional issues to the light of day can be hard and is definitely always intense. Since I was avoiding anything not immediately obvious on the surface, I steered clear of a writing process that would force me to examine things. When I eventually realized this fact, I made a conscious choice to continue not writing. My avoidance was in fact a smart decision on the part of my subconscious. The emotional issues are still there, but I have unearthed them, cleaned them off, sorted them into piles and assembled the fragments into a picture. There is a lack of emotional intimacy in my life that doesn't work for me. At all. I can accept many of the ways my life is directly effected by disability – unemployed, limited income, lack of access to information and even having to ask for help. As I've mentioned before, I have a far harder time with the ways disability indirectly impacts my life based on how the world reacts – fewer friends, limited dating, people's ignorant behavior and lack of respect. They all boil down to lack of emotional intimacy. If you think about it, the direct consequences of my disabilities are things I can figure out, like fining meaningful things to do that take the place of paid work. How do you change the amount of emotional intimacy you need? And how do you increase the amount in your life when you aren't the cause of the problem? I used to think I needed to change my behavior or attitude or mannerisms or deodorant or something. At least in this area, I swallowed the idea that disability was the responsibility of the disabled. I was required to do whatever was necessary to make others comfortable and that would make it all better. I had to crack the jokes, not get angry about being treated as less than, educate, explain and accept with a smile whatever I had to. In this way, I would make others comfortable with me and they would want to be in my life. In other words, if I was nice enough, things would change. And, if they didn't improve, I was obviously not being nice enough. My effort and attitude would fix everything. Um, no. I have come to realize that how others react to my disabilities is not based on something I did. It's about them. My only responsibility is to behave like a civil adult using the same measurements non-disabled people apply to themselves. Who, after all, would expect a non-disabled person to smile sweetly and thank the cashier who just handed your change to the person with you? Still, I was left with a big problem: how do I deal with my need for emotional intimacy not being met? Good question. No answers. While working my way through all of this, I couldn't write this blog without making my abject misery worse. Now I can at least write about it. Progress.

Cherry Picking

Okay, other disabled people, I have a question for you. Have you ever noticed that non-disabled people in your life seem to pick and choose what aspects of your disability they will and will not deal with? This is the friend who will come over and visit, but not go out because finding a wheelchair accessible restaurant is just too hard. This is the person who will understand what it is like to encounter an inaccessible building, but will not understand how socializing can be inaccessible. This is the individual who knows all about your deafness and moves heaven and earth to accommodate it, but thinks you should maybe just try harder to be less depressed.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It's somehow too much to ask or expect.
I guess I've missed all the chances in my life I've been given to "decide" if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me "accept" my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. "Jen, I want to drag you to this movie, but I don't think I can describe it. What can I do?" Instead, people just conveniently assume, despite me saying the contrary, that I can't go to movies. Or maybe if it was broached forthrightly. "Jen, what do we do about my other friends who don't know how to interact with a blind person?" Unfortunately, in its place, I'm left to fend for myself.
More and more, I've been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I've decided I'm no longer a yard sale box. I haven't yet figured out how you go about manifesting such a decision in the real world.