......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.

Comic

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

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.

Amazing Revisited. Again.

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

Running With Scissors

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

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.

Cane or Canine

Changing from cane to guide dog (or vice versa) often elicits questions that boil down to why one method of navigation is considered superior to the other. Ultimately a matter of preference, there are some aspects worth explaining and since I have just gone from long white stick to something that likes to eat sticks, I thought I'd put words to my choice.
A blind person moving through the world must attend to:
1. walking in a straight line
2. stationary obstacles
3. moving obstacles
4. the route being followed
5. geographic location within that route
6. any and all changes that might give warning of unexpected hazards
For me, simultaneously keeping track of all these elements of travel is mentally and thus physically taxing. Miss catching one of the six balls and catastrophe results. For example, should I be focused on walking in a straight line and not hitting anything, I might zone out and miss a landmark essential for my route. Should I have all those navigational course elements in my head, chances are I'll forget about moving obstacles. Anyone who knows me is aware of the fact that getting my attention while I'm walking around is next to impossible. I literally zone out to the point that I don't hear my name being said. Forget trying to have a conversation or toss off a casual greeting while walking past someone. All my mental powers are required to safely navigate my course.
On an unfamiliar route, a dog can attend to walking in a straight line, avoiding stationary and moving obstacles, and unpredictable hazards. The handler's job is primarily to focus on their location in the route being traveled. Some attention is necessary to encourage the dog, correct mistakes, and give commands, but it is mostly routine.
On the other hand, when you get home, your cane goes in the corner and stays put until you are ready to use it again. A dog requires food, water, potty breaks, petting, love, praise, entertainment, and grooming. On the other hand, your dog will wag their tail at you and lick your face whereas a cane is a singularly unresponsive cuddle buddy.
It all boils down to the cost of cane travel versus the cost of maintaining a dog. Each person has a different bottom line for both. In fact, it is much like manual versus automatic car transmissions. I've seen people have heated arguments about which is superior and the same can be said for those who prefer canes versus those who want a four-footed guide.
For me, a dog grants me independence. Oddly enough, I really didn't appreciate that fact with my first dog. (I had a very different life then including a significant other which probably caused me to be too dependent on people.) It was only with my second dog, Emmy, that I began to see how my life could change. Suddenly, I could go places that had complicated routes and reach my destination not ready to fall over from fatigue. While I knew this truth in a theoretical way with my first dog, it's practical application was not obvious until Emmy.
The challenge now is to fully realize the independence this dog offers me. With talking GPS, I can literally go to an unfamiliar area and find an unknown destination. Unfortunately, I'm a bit of a wimp and have a tendency to fear the "what if"s I can imagine. "What if I get tired and can't think clearly so I get really lost? What if my phone battery dies? What if the dog gets hurt? What if the dog does something stupid? It really all boils down to what if I fail? Somehow, in my mind, blind people aren't allowed to fail. Or, well, at least not this one. This is a clear case of disability – blindness and chronic fatigue – not being my problem, but rather my own uniquely shaped mind.