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.

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.

......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.

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.

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.

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?

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

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.

Equal versus Equitable

Put two proud, angry and strong disabled people together and interesting ideas will abound. This year I acquired such a person and she keeps saying things that make me think. Fairly fortuitous since I was in need of new blog material.

Here I write constantly about how TABs behave and why for one reason or another it bothers me. It would be easy to have the impression that I want special treatment and more consideration than the average person gives to the average stranger. And, in a way, I do.

When there are 3 kids and 2 chocolate chip cookies, someone must divide them into 3 servings of equal amounts. It is crucial that each child feel the portioning was fair. In life, we often apply this principle to our behavior – treat people the same way and it will be fair. In actuality, that is not remotely the case.

Loading a family's books into a shelving unit, you would naturally put the child's books near the bottom and likely the books interesting the tallest member of the family at the top. Equal would be even distribution of all the books over all the shelves, but would it be fair? Not particularly since shorter individuals would need to climb stepstools. allocation by height and interest is equitable because nobody would need to go to extra effort to achieve the same goal.

When I am isolated in a crowd and feeling invisible, nobody is violating the laws of equalness. They are making eye contact with another person and carrying on a conversation. Equivalent eye contact with me will get them exactly nowhere, so I remain solitary. Having to make additional effort to get my attention creates imbalance, but isn't that equitable?

Is It Just Hair?

Haircuts. I hate haircuts. Every step of the process – making the appointment, talking to the stylist, washing it afterwards – is rotten. Yet my ends like to split and tie themselves into knots, so I endure the scissors and consequent Haircut Blues.

Before I schedule an appointment, I have to decide if I want it to be with the last person to tame my locks or with someone knew. Devil I know versus Devil Who Might Do Better. Once I have made my choice, it's on to the type of haircut I will request.

Do I want something new? Just a trim? When it comes to my curls, there are two distinct camps: those who like my hair longer and those who like it shorter. I've been told, "Jen, you don't know how it looks, so you can't know what looks best" just often enough to never quite trust my own judgment. The conflicting perspectives along with my own self-doubt cause internal chaos.

Next up: trying to communicate with the stylist. They are always very nice and try their best, but how does a blind person relay her wants? I relate to my tresses in a way distinct from the visual aesthetics of the hairdresser. Words never quite work. Pointing isn't an option. Blind faith? Pretty much.

There are a few things unique to me and my head. Reconstructive surgery has made the top sensitive to pressure of any type. Random head shaving (not by choice) has left me with distinctive types of hair with different properties such as curl quality. Scarring has resulted in some weird thin areas. So, not only is my inner emotional typography complicated, but my head is literally the same.

Of course my personal preferences do not simplify this muddle. I refuse to use anything in my hair that you can't rinse out before leaving the shower. My tendency is to wash my hair, brush it, and go without further thought. Thus, my style must work in a zero maintenance situation.

Having communicated what I could and leaving my destiny in the stylists hands, it's time for the actual haircut and yet another thorny area – the conversation. While listening to the snip, snip, I am suppose to engage in prolonged small talk with a near stranger who knows next to nothing about me. The simple question, "So, what do you do?" leads to explanations of chronic illness. Even mentioning this blog, with its unusual title, results in necessary clarification. Salon chair chatter is not easy when you exist outside of the reality most occupy. Loud music might be disorienting, but it's also my salvation.

When the cut is done, I have to judge it by touch. Should it feel "wrong" to me, I need to find the right words to elucidate the problem. If I haven't been able to convey my wishes by then, what are the chances the right verbiage will magically appear in my mind? Infinitesimal.

Finally, I pay the long-suffering stylist and go home to wash the fragrance of salon products out of my hair to prevent sneezing. I do my usual wash, condition, towel dry, and brush, then leave it alone.

Hopefully I like the results and usually, I don't. In fact, I have a Post Cut Policy. I am not allowed to form a final opinion until four days have passed. Not only does this give me time to adjust, but also it gives my hair time to calm down. At the sight of scissors, my hair seemingly shrinks back into my head. After a few days, it comes out from hiding and I suddenly discover there is more length than I originally thought. This is the literal truth. I'd swear on a stack of...something.

In case you couldn't guess, I had my hair cut last week and am now in a Haircut Funk. Soldiers are dying in foreign lands, children are fighting cancer, thousands of Mexicans are living in shelters because of Sunday's earthquake and yet I am depressed over hair. It's just HAIR. But, my curls.....

You Can't Play

Whenever I leave my house – and I do mean whenever – something will happen that I interpret as "You can't play." These are events or circumstances that by their nature exclude me because of my blindness. Each and every incident is a reminder that I do not quite fit in the world, an octagonal plug in a round hole fitting, but with gaps all around.

These acts that speak louder than words fall into some broad categories. "You can't play unless you figure out how" is the least irritating possibility. When I first moved into my apartment complex, I discovered the mailboxes were in a grid without tactile numbers, so in order to "play" I had to learn my location and subsequently count rows and columns when I check my box.

Other examples include:

* intersections with crazy traffic patterns and no audible walk indication
* board games that I can't independently play being brought out at parties
* cafes and other public places where furniture is randomly relocated sometimes in walkways
* hotel room doors without tactile numbers

Eating out with friends, wait staff often sets a print menu on the table before me. This says, "You can't play unless you get help," and in this particular case has the added message of "and I am not going to acknowledge that may be the case." Now my friend is put in the position of having to read the menu. Equally irritating examples include:

* receptionists at doctor's offices handing me a clipboard of print forms
* bathroom doors without tactile indications of gender
* anything that comes in my mailbox not from Mom who always brailles it
* electronic appliances without accessible manuals online
* inaccessible websites
*stores of all types
* any organized outing where a car is required to attend

Musicians often tell stories before performing a particular piece of music. Sometimes they use visual gestures or facial expressions to communicate meaning they do not otherwise verbalize. This is a case of "You can't play and there's nothing to do about it." Additional examples are:

* anything from the above category in the absence of a person to assist
* television and movies without descriptive audio tracks
* elevators without tactile markings when you are alone
* * attending a meeting where print is used to convey information and never verbalized
* any service person refusing to help
* signs of all types because I don't even know they are there!
* ATMS that don't talk
* board games I can't even play with help
* promotional offers where you must be sighted in order to avail yourself of them

Finally, we have the most infuriating category. I have gotten on planes with only a cane that folds in half and it has been taken away from me in the name of safety. To me, this says, "You could play, but I'm refusing you the thing that makes it possible." This also happens when:

* a website I used to be able to use is redesigned making it inaccessible
* cell phone manufacturers and service providers stripping away features that make the phone more accessible so they can use the space for graphical interfaces or advertising
* refusals to make modifications because they would be inconvenient
* online information that becomes inaccurate because it's not updated

As the above lists indicate, circumstances routinely tell me I can't play. Each is angering, emphasizes my difference as a negative, and furthers my feelings of isolation.

Here's the thing: these continual messages of exclusion do not have to exist. Most have solutions and often those resolutions are not costly only requiring a desire to banish such messages and/or creativity to find ways of accomplishing this.

I could be utterly obnoxious slighting people for their lack of will or intellect, but I honestly believe the problem is more basic. People are simply unaware that their acts, words, or ways of doing things send a message beyond what they intend. However, I do believe individuals should open their ears and minds to hear the impact of what they say and do. Hiding behind ignorance as an excuse works exactly once, then I believe people should make the effort to educate themselves.

Now, for a few examples of "You can play too."

* people who smoothly interject information about visual queues they've used
* wait staff who apologize for the lack of an accessible menu
* Braille or tactile markings on restroom doors
* offers to help find a ride for anyone needing one to an announced event
* pulling out a board game everyone can play without needing excessive help
* planning events in locations with ramps etc and noting it on flyers
* acknowledging lack of access indicating you have at least thought about it
* making requested accommodations that simply inconvenience you
including a disabled person by directing a comment or question to them
* people who provide what you need in the same manner they offer a guest a drink

Beyond Acceptance

Today "boys" and "girls" we will begin with a story. Once upon a time, Jen took a shower and put on clothes that made her feel sexy, then headed off to a party with a friend. Upon arrival, the friend introduced her to the hosts and Jen presented a plate of cookies. Because the friend did not know anyone else in the room, there were no other introductions to be made. Jen hung out with her friend for a time, then told her she was under no obligation to be by her side all evening, so the friend moved off. Sitting on a comfortable couch, Jen drank her water and listened to the animated conversation all around. When somebody sat next to her, she smiled and said hello, but nothing came of it. From time to time, the friend came over to make certain Jen had what she needed and at the end of the night, they went home, the friend having thoroughly enjoyed herself.

Here are my two questions: did the people at the party demonstrate acceptance of Jen? Was Jen treated reasonably by these strangers? The reality is that nobody did anything wrong and yet it was not how I, at any rate, want the world to be.

Recently I read somebody's wish for 2010. "People will understand children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE." While I agree completely with the sentiment, my heart yearns for something that reaches beyond a solitary person isolated within a crowd.

Let me tell you another story. Jen bakes some of her killer chocolate cupcakes, puts on a cute outfit, and goes to a potluck with a friend. Upon entering, she is introduced to the crowd in the kitchen and offered a chair, which she accepts. The person beside her begins to engage her in conversation that goes on for a time, until he's distracted by food preparations. Turning to another cluster of talking people, Jen listens until something she does indicates her interest and the group grows to encompass her. The night passes with talking, laughing, and both Jen and her friend go home having thoroughly enjoyed themselves.

The contrast between the two stories is obvious, whereas the reasons for the difference are elusive. There are no striking differences in education, political bent, socio-economic status, or gender balance. While the baked goodies varied, the cupcakes can't be that spectacular. Clearly, in both groups I was accepted, but only in one was I included.

Age was the only factor varying between groups, with the potluckers all under 33 years old, and the partygoers above that age. At first glance there is no obvious connection between behavior around disabled people and years spent on this planet. But if you know something of the history of special education, it makes more sense. Starting in 1977, public schools were required by law to educate disabled children in the "least restrictive environment." As this policy took root, disabled children's presence in the regular classroom became more commonplace. Non-disabled children educated alongside their disabled peers gained a familiarity with disability that older generations lack. Such exposure breeds an ease around disabled people not readily achievable in other ways.

It may be that the media has been a force for constructive social change. With positive images of disability becoming increasingly pervasive, the younger generations have been exposed to more accurate portrayals of disabled people during their formative years. Maybe the potluckers had a different mental context through which they perceived me.

At a fundamental level, neither age nor media exposure are adequate explanations for ease around disabled people, and even being "at ease" around the disabled does not necessarily mean immediate inclusion. My pet theory is all about the subconscious. Without even realizing it, people see somebody like me and discard me as potential friend, date, or even interesting conversationalist. Simply put, it doesn't dawn on people to even approach me. I believe that familiarity with and exposure to positive images of disability have shaped subconscious processes in younger people making them more likely to view me as a person. After that, conscious choices play a role, but that is for another day.

My dream is to have a world where I am not just accepted but also included. I only hope a generosity of spirit amongst humans becomes more rather than less commonplace. Including a disabled person doesn't need to be about pity, being nice to the disabled person, or what a good human being does. It can simply be making an effort to overcome subconscious processes with conscious choice.

Everyone's Just Like Me

I sometimes forget the rest of you aren’t disabled like me. While listening to television, I will hear a character walking down a city street and wonder why I cannot hear the tap of their cane. Friends list what they are going to-do in the coming day and I question how they can even think of such a monumental effort that will leave them exhausted for days. And doesn’t everyone read books with their ears while washing the dishes? Can’t everyone follow directions that would work navigating a route with your cane?

If you think about it, forgetting everyone is not like me shows a certain level of self-acceptance. Many people see their disability in negative terms which makes them keenly aware others do not have such burdens. Others accept their condition with a balanced view of they are always aware that their circumstances are not typical. Crazy little me goes one step beyond that so alright with my situation that I assume the rest of you are happily dealing with it as well. I’m not different because the rest of you are blindly moving through the world making certain you do not exhaust yourselves.

On the other hand, I could just be incredibly self-centered. I am so wrapped up in how I relate to the world that I can’t be bothered to remember the rest of you function differently.

It is also possible the entire thing can be blamed on ingrained behavior. By now, I don’t need to think about what to do when I misplace my cell pone – I call it. I automatically grab my cane when I leave the house. I would never, under any circumstances, put a spice bottle back on a different shelf. I would find it literally impossible to put a clean knife in to the dish rack point up. These adaptive behaviors have reached the level of instincts so no wonder I forget the rest of you function in other ways.

Turn about is fair play and from time to time people forget about one of my disabilities. Usually, they ask if I can smell something and I give a sarcastic answer before laughing.

Unfortunately, when people who do not know me well forget I’m blind and are then reminded, they sometimes say things like, “Well, think of it as a compliment.” That stops my mirth. Apparently, the praise comes from the fact that I function so ell that I do not behave as if I am blind. This means the person has a preconceived notion of what a blind person can do and when I exceed it by behaving like the rest of the human race, I have accomplished some laudable feat. In my mind, surpassing low expectations isn't achieving some lofty goal. If a woman lifts something extremely heavy, nobody assumes she is a man because women can’t lift great weights. When a high school valedictorian applies to a college, it would be considered racist to conclude they are white. Assuming an Asian person is a computer wiz has become a cliché. So, why should I be flattered when somebody assumes blind people aren’t as competent as the rest of humankind?

This is not to say I am not worthy of praise for I have adapted to my circumstances better than some. I have great coping tools developed over years of refusing to accept those lowered expectations as part of the reality I inhabit. My skills reflect time, energy, creative thinking and obstinacy.

And somehow I’ve managed to end another post by telling you why I should be praised. This has got to stop. Seriously.

The Conundrum: What Others Think

In my as yet unpublished novel, my female protagonist struggles to resolve her feelings of being not like everyone else with her desires for ordinary things like career, love and family. AS a disfigured woman, she believes it is a one or the other choice – be true to how it feels to live in this world or hide all of it under the façade of a typical life. Part of the story’s resolution involves her learning they are not mutually exclusive things.

The other night I was trying to explain the relationship I have with my family to a recently-acquired set of friends who know nothing about my perspectives on disability let alone my history. I tried to articulate my struggle to be seen as independent, but the words coming out of my mouth didn’t even make sense to me. After all, more than one family member has proclaimed their amazement at my ability to live on my own which contradicts any impression of them viewing me as dependent.

Today I finally put two and two together and actually arrived at four. For me, there are more or less three states: child-like dependency, the way I live my life, and my assigned role as “SuperJen.” The first encompasses such things as me being treated like I am five years old, people wanting to do things for me, and the assumption that somebody must “take care” of me. “SuperJen” is born when people acknowledge that I live on my own. They see my life as some extraordinary accomplishment beyond most mere mortals to achieve. In the middle lies the reality of my life which is a combination of me receiving help for some things, doing others on my own, and sometimes acquiring the necessary assistance to then carry out a task for myself.

I finally get it! Most people put me into one of the extreme categories instead of the more complicated reality with all its shades of gray. Our brains with their this or that dichotomization of the world has trouble with shades of gray. *I* have trouble with shades of gray. No wonder I’m either five or SuperJen.

Back to my female protagonist’s impasse. Until today, I never saw her problem reconciling experience and desires as somehow parallel to my frustration with being put into one of two equally inaccurate categories. The bottom line is that both are about how others view our lives versus the reality we know in our hearts. We are obsessed with others perceptions. My female protagonist doesn’t want mundanety to be viewed as capitulation to how she is treated. I don’t want my acknowledgment of either my need for help or my accomplishments to cause others to pigeon hole me into five-year-old or SuperJen. I need to face the fact that a character I created has something to teach me because she learned how to find a balance I have yet to achieve.

Moral of the story? I really need to stop worrying about what other people think. Then again a major part of my life’s work and the reason for this blog is focused on what other people think. Others perceptions often impact the choices and opportunities available to me. Then again by caring about what others think and behaving accordingly, I am restricting my own actions. How do you reconcile those two things? If you can find a way, take a whack at world peace because I think it might be easier.

What's Funny to Me

Today I will begin by telling you a story. Once upon a time, I met a new friend and was invited into her home. I went gladly to join a group celebration of something or other. There I learned about the step up between living room and kitchen, the height of the raised door jam and all the other little things that help me function independently. Because of my obsessive level of vast water consumption, I soon needed the restroom and was directed there.

Ninety seconds into my sequestration behind the closed door, two of my friends in the kitchen called, “Jen, there’s no sink in there.”

When I went into the kitchen to wash my hands, the two friends were giggling. One of them said, “We were going to just let you hunt for the sink, but thought it might be cruel.”

I joined in the laughter because it would have actually been extremely funny.

Have you missed the humor in this? Well, you are by no means alone. As is my habit, I have tried to understand it. Here’s my theory.

Like with many things, it’s all in the eye of the beholder or rather the mind in this case. I view my various disabilities as facts of life. They have plusses and minuses, but in the end are more or less neutral. Many others see them in more negative terms – suffering, complications, things I cannot do, and burdensome. To these people, witticisms based on disability are the equivalent of poking fun at a suffering person. Social taboos make humor based on other’s miseries verboten.

Emily Salers of the Indigo Girls once said, “You have to laugh at yourself cuz you’d cry your eyes out if you didn’t.” Finding the humor in life is definitely better than settling into the sorrow. I know whenever possible I choose mirth over tears. Some might say that with issues of disability I am opting for the positive spin. I believe the cause is deeper than a conscious or even subconscious choice.

Years ago, I laughed about my disabilities far less. I also had lower self-esteem for a variety of reasons, some based on my disability and some on other things. There was definitely an element of depression in the mix. Back then I don’t think I possessed the ability to see the humor, perhaps unable to laugh at my own misery.

I have to confess I sometimes find what TABs do to be hysterical. In January, I attended a party to celebrate Obama’s inauguration. I can’t remember how I wound up talking with this woman, but she was fixated on my disabilities. Utterly fixated. When a friend came by, I latched onto her and was rescued. I explained that my conversational partner was obsessed. My friend counseled that she was just being nice and I was overreacting.

An hour later my friend was back at my side saying, “Oh my God! You were right!”

“About?” I asked.

“That woman cornered me. She asked me a bunch of questions about you. She kept going on about how you weren’t getting what you needed and who took care of you.”

“Yeah,” I sighed.

My friend finished with, “She thinks I’m a saint for helping you. Now my halo is really shiny.”

With this my amusement comes from the over the top nature of the situation. Such stories are the fodder for disabled comedians not real life. While I occasionally suspect somebody is sanctifying my friends while seeing me as helpless, rarely do they actually act on it to this degree.

One more story before I go, this one only funny because of its “That never happens in real life” nature. I was at an open mic and this comedian was bombing. He knew it and desperately reached for the overdone “why women don’t date me and I’m so pathetic” shtick. Then, suddenly, he asked, “Hey, blind girl in the back of the room, what’s your name?”

He had to mean me, so I answered, “Jennifer.”

“Hey, Jennifer,” he asks, “Want to go on a date with me?”

“Um, I might like having a real conversation with you first.”

He didn’t even wait for my full answer before stating, “See, I’m so pathetic even the blind girl won’t date me.”

Yes, completely ablist and offensive. Funny only because in my wildest dreams I never thought somebody would do that. To me. In public.

I think I have inadvertently made yet another convincing argument as to why TABs should stop viewing disability as misery and start seeing it as simply a fact – they will laugh more. And if that last sentence hasn’t at least made you smile, then….

Airline Adventures

I'd like to take a breif moment to express thanks to my friend Kathryn who has ben editing my posts and making them look better. Thanks MB!

As previously mentioned I went on vacation and used planes to get from one coast to the other. Flying often engenders experiences that tweak my disability antennae and this time was no exception.

I’ll relate the first experience as it happened. If it seems unclear, it’s because I was and remain confused by what transpired.

As is our habit, Mom came into the airport with me. When we approached the counter, I couldn’t figure out where the airline person was standing or what computer terminal she would use to process me, so I asked Mom. Her answer didn’t make sense, but I tried to muddle through.

There was some concern one of my bags was overweight, so I focused on the weighing process. A bunch of numbers were bandied about, including 55 and 54 pounds. At first I thought it related to the other passenger next to me, but suddenly Mom was ushering me to one side and the airline person I thought was waiting on me was talking about repacking.

When we stopped moving, I asked, “How are we going to know if the bags are fixed?” I was curtly told there was a scale right in front of me.

I grabbed a tote and instructed Mom to take the shoes out of one of the suitcases and fill the tote. I sorted through the other bag and looked for small, heavy objects that would go through security easily.

Nothing made sense. The bag on the scale was not the bag I wanted on the scale. I was having trouble figuring out how to get 9 pounds of stuff out of my luggage. I was almost in tears. Mom was doing things but without verbal feedback from her I wasn’t sure what. (Still not certain if she did what I was asking or something else.) It was only when I realized Mom was putting items into the smaller bag that I figured out only one was overweight.

Finally, when things were fixed, the airline person dismissed us. I said, “I need a boarding pass.”

The airline person replied, “The last 15 passengers to check in get them at the gate.”

“I don’t have anything to get me through security,” I explain.

Mom answered, “I have it.”

After the airline person vanished, I expressed upset that the woman had given the security pass to Mom instead of me. Mom explained, “She tried to hand it to you, but you didn’t see it.” (Gee, a blind person missed the visual gesture of being handed something. I’m in shock.) Mom was not getting my point and I didn’t want to argue just before I left, so I dropped it.

What caused me to be so confused? Nobody was speaking directly to me. The airplane person and Mom handled things leaving me out of the loop. Obviously information was conveyed in visual ways, like gesturing to the bag on a scale or a digital display. Normally being treated as extraneous to the situation only negatively impacts my feelings. His time, however, it caused some frustrating problems.

Even when it doesn’t matter, I tend to insist people deal directly with me not the person with me. Friends have been told to not respond on my behalf forcing customer service staff to converse specifically with me. While it might appear that I am being extremely difficult, I have good reasons beyond hating to be ignored. If I allow customer service staff to take the easier route of interacting with my sighted companion, I might miss important information as evidenced by the above situation. While it is harder on everyone, it is also necessary.

Think about seatbelts. WE hate to wear them, but we do in order to protect ourselves from potential danger some vague day in the future. Though they are uncomfortable, we as a society consider them a necessary form of proactive protection.

The same theory applies to other aspects of my life, like kitchen cupboards. I am rather zealous in enforcing my “close the cupboard door” rule. Most of the time, I can track details well enough to realize a door is open before catastrophe occurs in the form of the sharp corner whacking my face. Periodically, I miss that somebody opened a door and smack into it. Usually, it’s not hard enough to hurt, but I have drawn blood more than once. Some would argue that I made a mistake by not keeping track of my surroundings. If I paid better attention, went around with a hand before my face, or didn’t insist upon independent movement, open cupboard doors would not be an issue. I would argue that the act of shutting a cupboard door seems far easier, safer, and humane than me becoming a paranoid crab who moves about only when led by the claw. My safety should come before another’s convenience. Similarly I feel ease of interaction should take second place to me understanding what is happening especially if it directly impacts to me.

The second little flying tidbit took a while to register with me. I board the plane before the rest of the passengers, so I hear what flight attendants say as they prepare for passenger embarkation. I happened to be around while the same flight crew conducted two passenger onslaughts. The head flight attendant kept saying things like, “How many wheelchairs do we have?” or “Where are my wheelchairs?” I finally realized he didn’t simply mean the inanimate objects, he meant the actual people. Apparently, if you use a wheelchair to get down the jet way, you are suddenly transformed into only that object. *bangs head against wall* And people wonder why I get so frustrated by anything that even hints at stripping away a microscopic layer of my personhood.

A moment of thought, making sure information is being conveyed to the involved individual, or the addition of the word “user” to the word wheelchair doesn’t seem like too much to ask for, does it? To me the wrongness of what happened is so incredibly clear – I know it the way I know air is going in and out of my lungs without conscious thought. Yet to many it is anything but. Today it feels like the gap between disabled and TAB is more like the Grand Canyon than a drainage ditch.

Lessons Learned

This past weekend San Diego held its annual Pride Festival. As a co-coordinator of San Diego Bisexual Forum (Bi Forum), I was heavily involved in planning and executing our parade contingent and informational booth. Tons of effort was expended by me and my fellow coordinator as well as a core group of members. Then, this weekend, the event.

I know this was specific to me, but my overwhelming feeling throughout was boredom. Parades are not for blind folks and the only thing worse than watching is marching. Actually, to conserve energy, I rode in the back of a truck. I was by myself and therefore had nobody to describe the sights. My only salvation was the group behind us that had a loudspeaker with an amusing man whipping up the crowd.

I spent Friday setting up the booth making sure I knew where each item was placed and that it was an obstacle-free zone. By the time I arrived at the booth Saturday, that was no longer the case. Chairs were everywhere. Bins tucked under tables were pulled partially out. People were in the way. I sat in the back and tried not to need to move. Had I been able to move freely, I would have not been equipped to snag those walking past and interest them in what we had to offer. Well, I could have talked to them, but getting there attention initially would have been…. impossible. I was utterly useless. I guess useless goes right up there with boredom as my overwhelming feeling. And, in case you didn’t know this, I loathe feeling useless.

I hold nobody responsible for this happening. Unless blind people were running everything, there was no way for me to truly participate. I can think of some ways people could have made me more a part of things -- of more use -- but bottom line is that it is not a great situation in which to be blind.


From the above experience, I learned a few things that will help with future events. This is not the first time Bi Forum has taught me something, though. Five years ago, when I began attending meetings with a friend, I was isolated. In fact, whenever people freely mingled, I sat alone. Sometimes people came to speak with me, the interaction having the flavor of them taking pity upon me instead of wanting to get to know me. And, conversation petered out fairly quickly. Less formal events like parties were equally disappointing. Previously, my experiences with LBGT groups was limited to organizations affiliated with universities. There, as you would expect, I felt a part of the community. Bi Forum felt like just another collection of non-disabled people who didn’t get it. Usually, time and repeated exposure to me solves the problem, but not in this case.

When my friend stopped attending, so did I. In June of 2008, I was present when some Bi Forum members were discussing Pride. At the time, I had been considering getting involved with something to test my limits in terms of “professional” commitments, so this seemed like a great option. Besides, if I failed I would not be letting down a group that was central to my happiness.

This time around, things changed. First, it was somebody commenting on how I had “stopped hiding.” I think he mistook the necessity of me walking behind a sighted guide in crowded areas as a personality trait. The fact that I brought baked goodies to every meeting also helped. Mostly, though, I think it was the leadership role I assumed. As a co-coordinator, I was in the middle of everything and people had to deal with me, like it or not. This became even more the case when I started facilitating the support group. They could not simply avoid interaction because they were uncomfortable or unable to figure out what to do. I never realized that leadership positions can actually break down barriers erected by social norms.

Another piece of the puzzle became clear when a member told me he was enjoying getting to know me. I bluntly said, “Umm, I have been around the group for four years. What’s the difference?” He told me he previously thought we would have nothing in common because I was blind and conversation would be limited. I found this to be especially interesting since we did share a common sexual orientation. To him, that common ground was not sufficient to bridge the gap between blind and sighted. I have no idea what caused him to change his mind, but he did.

I am not the most outgoing person on the planet and describe myself as a shy extrovert. Social interactions in large groups of strangers when I am not familiar with the surroundings are even more challenging. I think having a job brings out the overachiever in me and forces me to deal with other people as well as occupying my time. I suspect, but do not like to admit, that I could probably better deal with social situations if I pushed my boundaries just a little.

The tool of taking on a leadership role to force people to overcome their discomfort intrigues me. Now I need to find a way to apply it to my most irritating social situation – the live music venue I haunt. After more than three years of regular attendance, the people who acknowledge my presence can be counted on one hand. There is a cluster of regulars like me, but no means to become a leader. I shall ponder.