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?

......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.

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.

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.

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.

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.

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

An Act of Will

Often when people behave in ways I find objectionable the route explanation is ignorance. They simply lack the knowledge to handle the situation in a "better" way. Expressions of my frustration at the state of affairs elicit the counsel to "have compassion" and sometimes that's even possible. Then there are the times that the ignorance takes on an intentional flavor making me angry.

There's an expression – burying your head in the sand –meaning a person has chosen to not take in knowledge that is offered to them. To me, this constitutes willful ignorance that I find unconscionable because the individual had the option to learn "better" and refused. In fact, I find it worse than someone whose behavior is based on a genuine belief that I am less capable, childlike, pitiable, or whatever. At least in that case the individual has paid attention long enough to listen to another perspective. I may not like their ultimate decision, but respect it as long as it doesn't deny me what I need.

What constitutes willful ignorance? Receiving a request from a dyslexic person for alternative formats with an explanation as to why and two months later acting surprised, baffled, and unprepared when the same inquiry is made. Witnessing how a sighted person assists a blind man and later not knowing what to do. Attending a panel discussion where a wheelchair user explains how insulting the phrase "wheelchair bound" is and continuing to use that phrase over and over. Being given a concrete set of steps for creating alternative formats that is simple and easily done and never doing it. In other words, literally tripping over the facts and pretending the path was clear.

As disabled people become a more visible part of society and their experience better articulated, I see this type of thing with greater frequency and find it utterly incomprehensible. How can a person be told what to do and refuse to do it? Why would they ignore information? What is the mindset that makes this behavior alright? I don't get it. AT all.

Unfortunately, in my own life I am dealing with a case of collective willful ignorance. While I might not understand it or know how to facilitate change, I do know my own limits. I will not lend my talents and energy to benefit a group that buries its collective head in the sand.

I just wish I could wrap my mind around the why of it. While it feels incredibly personal, I suspect it is not. Until I can comprehend the behavior, I know my unanswered questions will rattle around in the back of my mind. Insight welcome.