......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.

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.

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

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

Acquiring Objectness

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

Riding The Bus With My Dog

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

Misery, Desperation and Nightmares & Dreamscapes

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

A Tale of Two Extremes

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

Blind Self Defense

A local community group of and for blind and visually impaired people offers a free self-defense class to those with vision loss. To encourage myself to try more adventurous travel, I decided to attend. I'm going to attempt an objective re-telling of events. First, I called to find out how to reach the location. I was asked, "Do you have any usable vision?" I replied in the negative. "Then just call us when you are at the corner and we will come get you." Being me, I thought, "Screw that" and tried to find the place on my own. I failed and resorted to calling. I was told the woman would "Throw the harness on the dog and be right there." A man then pulled up and confirmed I was going to the place in question. "I'm here to give you a ride," he said. "I'm not getting in the car of a man I don't know," I flatly and rather emphatically stated. "Then how will you get there?" he asked. "Um, walk." I answered. "Turn right at the first driveway," he said and by subsequent lack of presence I determined he had left. He did re-appear about when I needed to turn and directed me inside. I did not enter the building until I heard the sound of other people. After leaving my guide dog leashed to a chair – standard practice in such a situation – I took my telescoping cane and went to the spot I was directed to occupy. It is all the way across the room from my dog. Someone then asked me, "Why do you have your cane?" "So I can walk places," I replied. "You don't need it. We'll take you wherever you need to go." "Um, is it a problem for me to have it?" "It might get in the way. We'll just put it by your jacket." "Uh, okay." Class happens. At the end, I need the restroom and am given directions that include, "Use your echolocation to find the first hallway on your right." I don't really have great echolocation, but I did find the hall with my dog's help. Upon leaving, I asked which way to turn once I exit the building. I was told right and I tried that. It led me to a trash can, poll, and bush. I went back inside and inquired, "Go right immediately outside the door? There was a bush and stuff." "Just tell your dog to go right." I did that. The nice mailman had to help me get to where I needed to go. Note: The blog is moving to People Aren't Broken

The Stories WE Tell

Because they are primarily associated with creations of fiction, Stories have acquired a bad reputation. When the word refers to events in our lives, it calls their validity into question. In this blog, I tell stories frequently in the hopes that they will convey a truth better than an explicit statement for "Truth dressed as story can be easier to embrace." The color of context, character and surroundings does not dilute or nullify the genuineness of my experiences, but it does transform it into something softer. Same end message with a more pleasant mode of receiving it.

Our lives can be framed as a series of stories we tell ourselves and others. It goes beyond anecdotes to encompass an overall message. My story, for example, is about how disability has shaped me giving it the power of a character that can impact plot. My life contains a story about how circumstances impact two people in very distinct ways. My presence out in the world tells anyone listening how what is thought to be life-ending can be the opposite.

Unspoken stories – those conveyed without me saying a word – have one kind of power. My spoken narrative, I have found, has a transformational strength uniquely its own. I can give a lecture with facts and theory that articulates why plastic surgery is a solution to body image issues that appeals because it takes less effort but also has a shelf-life because we all age. I can also stand before a room telling a string of stories about my experiences with reconstructive surgery and how I felt by it's end. Then, I can describe the various events and phases that morphed my body image into something healthier. While the same truth is conveyed, the one with greater transmutative power contains my life stories.

And then there are the stories about me that other's create. They are woven around the 'truths' of my life others believe they know, such as my life is full of hardships, I must possess special abilities as compensation, or even simply I cannot do x activity. From I cannot drive," they imagine a tragedy of isolation and loneliness with me as the unfortunate protagonist. As is the case with that example, there can be a kernel of truth in the reality they have fashioned. Just enough truth so that a vague vision gains the substance of fact in the inventor's mind.

When I run up against people who are operating based on these supposed facts, I tend to feel like I've hit an unmovable wall. There I stand, a living, breathing contradiction of their story, and yet it has no power to change the plot or elements of their tale. I often must engage in gorilla tactics to cause alteration. One always successful ploy is to say something that involves the phrase "I am the co-coordinator of the San Diego Bisexual Forum."

I would have less objection to these narratives if they did not inform action. People creating stories about my helplessness is one thing. People treating me like I'm helpless is quite another. Behavior of others evokes tears and yells, frustration and pain. Ultimately, I tend to take such events, treat them with sarcastic humor, and create my own stories to lessen their sting.

Unfortunately, sometimes the stories spun by others have sway over even me, especially when it comes to narratives about my value as a person. Often such tales begin with incontrovertible truths such as I don't work or pay taxes, I receive social welfare aid, and I need help to accomplish daily tasks. Intertwined with these truths are societal beliefs about independence, what is considered a worthy contribution to the world, and what is assumed about my ability to achieve. Suddenly, a story springs forth that has enough truth to make it as insidious as sand on a beach. One minute it's on the ground under your shoes and the next it's in your socks, stuck to your leg, and in your clothes. While you might clean it off with great dedication, it's somehow present that night when you undress.

It bothers me that other's stories profoundly effect me, engendering self-doubt and feelings of unworthiness. I wish I had a way to wall myself off from all of it. But, if I am going to believe in the transformative power of my own story, then I must acknowledge and accept that the stories others imagine for me have their own influence. This is why no matter how long I live or how hard I try, I will forever be effected by what others think.