......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.

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.

Pause for Laughter

I think everyone – me, you, and this blog – are in need of some levity.
About ten days ago, I realized my wireless computer keyboard was disgustingly dirty and set about cleaning it. There was water and sponges and scrubbing and vigor. There was also apparently some damage done.
I brought the keyboard and the computer back together and chaos erupted. Eventually, the computer just went quiet – a cataclysmic event equal to the blank blue screen – and I shut down the computer. It turned on just fine, but made no sound.
I removed the keyboard from the area, hooked up a new one, and rebooted. Repeatedly. No sound.
I used my netbook to access the desktop's hard drive and confirmed it was working. Just not talking. My assumption was that the sound card had died tragically.
Usually, such a thing would evoke panic, but this time I was rather distracted by surgery, so I just used my netbook and iPhone. It sucked in terms of speed, but wasn't that big of a deal.
Finally, I came across something I could not accomplish with the tools at hand. To burn something to cd, I dragged out my monitor and enlisted sighted assistance. We went through the process of making the CDs, then my partner happened to look down at the speaker icon and saw it was Xed out in red. She clicked. Talking happened.
I went without my computer FOR TEN DAYS because mute somehow got hit when my wireless keyboard went nuts after I graciously cleaned it.
Oy.
Now my computer just does it's usual dying routine about once a day. That I can live with because my resurrection rituals work under those circumstances.
And then there was the man at open mic. I was sitting in a chair when someone started, I thought, speaking to me. I did the usual, "Are you speaking to me?"
He affirmed that he was and asked if I was going to play the drums that night.
"Um, no. Why?"
"I can see your drumsticks."
I thought, reached under my chair, pulled out my folded up cane, put it back together, wiggled it, and said with a laugh, "Not drumsticks."
He apparently didn't think I was all that funny because that pretty much ended the conversation.

Lens of Disability

Second Wednesday of the month means something humorous. Aside from being blessed by a total stranger who repeated himself because I was ignoring him, nobody has done anything worthy of my ridicule. So, something short, sweet, and light. A great dessert after all the heaviness.

Sometimes I feel as though this disability thing has gone beyond an avocation and reached the level of obsession. Often I bite my tongue so as to not yet again say, “AS a disabled person…” I am quite possibly "Jen The Broken Record." Shockingly, nobody has attempted to muzzle me. Yet.

Recently, I had a revelation: Anything can be looked at from a disability perspective. Absolutely anything. What lotion will I put on after my shower? Well, if I am going out in public, the scent might negatively impact somebody with Multiple Chemical Sensitivity forcing them to avoid me or possibly leave the room. So, I reach for unscented lotion. How should I emphasize a phrase on a poster? If I simply use color, anybody who is color blind will miss the point, so I should probably use a change of font as well.

If disability creeps into such mundane considerations, no wonder it is possible to see more significant issues through that lens. Obama’s stimulus package? Oh, let me count the ways. Disabled people are often at the bottom of the economic ladder, so mortgage assistance is often not relevant to our lives. We cannot afford to buy homes. Instead of helping people get out of trouble they often got into eyes wide open, some of those funds could be better spent on accessible transportation or a food stamp policy that allows for increased amounts for those with food allergies or sensitivities resulting in higher food costs. San Diego is considering water rationing. Has anybody thought about people with mobility impairments who take longer to wash themselves or dishes? Public health concern anybody.

I still wonder if my life’s work has morphed into an obsession. So, I dare each of you to come up with a social, political, or economic issue that you think cannot be examined from a disability perspective. I’m not sure if this will prove or disprove I’m obsessed, but it should be interesting.

Absurdities

Like everything else, humor comes in all shapes and sizes. This month's first story falls into the category of so bad that it passes into the realm of absurdity. It came to mind when I was writing the history of my medical situation.

The summer I turned 18 I had my jaw surgically broken and wired shut. Because I only breathe through my mouth, there were concerns about oxygen supply, so they did a tracheotomy. (They cut a hole in your windpipe and insert a tube through which you breathe.) The two unexpected consequences were pneumonia and an inability to speak. All the coughing you would expect with pneumonia happened through that trach up to and including bloody mucus.

This surgery took place in Virginia a couple of hours from my Aunt's home. While I was at the hospital, my sister and a cousin (not the Aunt's child) visited with my Aunt and her kids. For better or worse, in my family, people are "protected" by not being told negative things if they are already in a stressful situation.) Therefore, it was only after I was discharged from the hospital and we went to retrieve the two visitors that we learned my sister had broken her foot. For the eight hour trip home in our little car, we have me coughing up a storm in the front seat while my sister had her foot propped up in the back and my cousin was wedged in somehow.

Having your jaw wired shut means liquefied food. Since I was unable to even drink, I used a huge syringe to suck my meal up and then squirt it into the back of my mouth. Our long trip home necessitated a stop for food. Picture this: we were in a restaurant with my sister on crutches and me with a trach, coughing constantly, while consuming pureed clam chowder with a syringe and trying to communicate with gestures.

The story gets better. Mom must have been very stressed out and consequently speeding because we were pulled over by a cop. Poor cop. Poor Mom. I engaged in some strategic coughing and my sister and her huge white cast were easily visible in the back seat. The officer let her go with just a warning. The second time – yes, you read that correctly – it was the dark of night and the officer new my family slightly. I guess coughing wasn't sufficient to sway her because that time Mom received a ticket.

The second story has no tragic elements, instead offered to leave you on a cheerful note in case the above didn't fill you with hilarity. After reading a previous entry, a friend of mine reminded me of this event's occurrence though I still cannot clearly bring it to mind.

The basic story will be familiar to you. We were hanging out in a coffee shop and a woman engaged us in conversation. She went on about how nice it was that my companion helped me. My friend fielded these comments as graciously as possible while avoiding continued conversation. Eventually, the woman went away.

When my friend went to the counter to get drinks, the woman approached her again and said, "Oh, it's so nice how you help her."

My friend replied, "She's my friend. I do things for my friends. They do things for me."

"You're just such a great person," the woman enthused, "what do you enjoy most doing for her? What makes you feel the best about yourself?"

With a straight face, my friend answered, "Oh, well, just before I leave I re-arrange all the furniture and the thought of her stumbling over it gives me great pleasure." Not waiting for a response, my friend walked away.

I am running out of amusing tales with which to regale all of you. If it's not too much trouble, send out some vibes that will encourage people to do wacky things. After all, it will at least make me laugh -- always a worthwhile endeavor.

Blindness Can Be Funny

I don't know about you, but I'm in need of some serious levity. And, yes, that is an oxymoron, but you get the idea. This month? The things that happen only because I'm blind.

My grandparent's home is on a lake and as a child, I spent a good portion of my summers there with my sisters and cousins. Except for my grandmother, everyone water-skied. Because of my various reconstructive surgeries, I was forced to wait until the ripe age of eight to learn. To give you perspective, I believe that one cousin was maybe four when she tried it.

For any of you not familiar with the sport, beginners usually learn from the water, squatting in position using the pull of the boat to get up. Only experts stand upright on the dock and jump into the water. Intermediates sit on the edge of the dock and go from there. I will never progress past intermediate.

On my maiden voyage, I went through the routine familiar from enviously watching others do it: I put on my life-vest, wedged my feet into skis, and slid off the dock into the water. I was taught how to crouch so my skis were at an incline with the water's surface, tips pointed upward legs bent so my backside more or less rested on the skis. Then, they gave me a handle attached to the rope and put enough tension on it so I didn't lose my careful positioning. Someone on the boat then yelled, "Hit it!" and we took off.

I let the boat pull me up, just as instructed. Usually, people fall multiple times before reaching this point, so I was very pleased as the boat towed me in a circle. When we neared the dock, the boat honked and I let go sailing over the water toward shore, very proud of myself.

"Jen, didn't you hear us?" everyone on the dock asked.

"No."

"You needed to stand up!"

"What?"

"You don't go around squatting like that. You stand."

"Oh."

I thought being pulled up by the boat meant pulled into a squatting position when the actual objective is standing. Once I tried standing, I fell tons. Actually, I still do, thus the never progressing past intermediate thing.

The above happened simply because I didn't understand a key part of the activity. At other times, my blindness combines with my "I must be right" attitude in amusing ways.

After I developed multiple food intolerances, by necessity I learned how to cook. At the time, the people I knew didn't cook much, so I was impressive in comparison. One friend who stayed with me loved my curried sweet potatoes, so while I was making dinner, I told her the recipe and she wrote it down. One of the ingredients is curry powder, but that can be a widely variable spice from brand to brand and source to source. I reached for the type I was using and suggested she look at the ingredients in order to find an equivalent version.

"Jen, she said, this isn't curry."

"Yes it is," I replied.

"No, it's Cajon seasoning."

"No, the Braille right here says curry."

"And yet the print says Cajon."

Ooops. Now we call them Cajon sweet potatoes. They are still tasty.

When you think about it, it is rather ridiculous that I discount what eyes perceive to the point that I assume the other person is wrong. Here's one final instance.

I was flopped across my couch on my stomach, head pillowed on my arms while my friend occupied the comfy blue chair. At some point in our conversation, she glanced over at the end-table and said, "Ryan's totally hot."

"Huh?"

"This musician on the Ryanhood CD is hot."

"No, you mean Cameron. The group is Ryan Green and Cameron Hood."

"No, I mean Ryan."

"Trust me. Cameron's the hot one."

"He's labeled Ryan on the CD."

"Oh."

From multiple Ryanhood concerts, I had a very vivid impression of both musicians. I took this as a better indication of physical attractiveness than the observations of a sighted person who could actually see the pictures. This is akin to the times when I find out things about my friend's appearance, like their hair color. If it doesn't fit the mental image my mind has constructed of the person, I am totally disconcerted.

I suppose I have just made an excellent argument for me being convinced of my rightness beyond all reason. Somebody will use it against me sooner or later. That really shouldn't be allowed – a violation of the fair fight rules. "Thou shalt not use a blog entry to disprove its author."

Mrs. O'Neil and SilentJoe

According to a friend, this blog tends to be a wee bit serious. Last month I wrote a post with a lighter theme. I've decided to make it a tradition with a little humor the second wednesday of each month. So, the staid entry I scribed over the weekend shall have to wait.

In the winter of 1999, I was dating a man who lived near Boston while I resided in the western part of Massachusetts. Occasionally, I went to stay with him and we would shop at the local grocery store. One such day I waited by our cart and he went in search of something, probably his favorite food – bread. A woman approached me and introduced herself as Mrs. O'Neil. She then introduced me to her son, Joe, who was blind like me. At this point I knew things were going to get interesting.

Joe said absolutely nothing and gave me a hand shake that involved only some of his fingertips. I was probably not the friendliest or most enthusiastic person on the planet at that moment, but compared to him I could have won Miss Congeniality. Easily.

Mrs. O'Neil began extolling Silent Joe's virtues. He went to college all by himself, was somehow involved with the school's radio station, and had some nice friends. Mrs. O'Neil was very obviously proud of her little boy.

I uncharitably could not help thinking that I had graduated from one of the Seven Sisters, ran a peer mentoring network for disabled college students, lived one hundred and fifty miles from my parents, and had friends who saw me through think and thin.

Finally, Mrs. O'Neil got around to the point. "You seem like such a nice, lovely young woman. That's why I brought Joe over to meet you. You two have a lot in common. Where do you live?"

I happily explained, "I live near Amherst, but my boyfriend whom I'm visiting resides right around the corner. He's off finding something."

Okay, in Mrs. O'Neil's place I might have taken that as a creative line designed to brush her off. Apparently, she concluded just that because she kept talking about SilentJoe and me determined to find common ground for us. Whether I liked it or not. SilentJoe surprisingly had no opinion.

I kept replying with "my boyfriend" this and "my boyfriend" that. Eventually, she took herself and SilentJoe off to continue their own shopping.

In discussing the event with my boyfriend, I discovered SilentJoe was also CanelessJoe led around by his Mother. Admittedly, from time to time I go around without my cane, usually because I brought the dog who was sacked out in the car or because I was with the object of my affections and we were holding hands. The hand-holding does not preclude the use of a cane, but sometimes it's nice to focus on the romance of it all. Normally, even if I'm going sighted guide, I have my cane in the other hand and force myself to use it properly. Sometimes it even saves me from calamity.

In any case, SilentJoe had and still has my sympathies. He was raised by a woman who saw little potential in her blind child and raised him with low expectations. Her pride in her child is admirable, but setting the bar ridiculously low to have that pride is sad. Instead of fostering her child's independence, she encouraged dependence by leading him without a cane. The fact that he never spoke is truly distressing to me on multiple levels. I hope SilentJoe found his voice and his sense of self.

But today I am suppose to be full of humor not woe and my story has not quite ended. About fifteen seconds after Mrs. O'Neil and SilentJoe departed I heard her voice, then my boyfriend's. She'd cornered him.

Later he told me she had stopped him, introduced herself and SilentJoe, and asked if he was with me. He answered in the affirmative. She then asked if he was my boyfriend. He indicated that was the case.

This let lose a flood. "Oh, you must be such a nice young man to be dating her."

My boyfriend by now familiar with the things people do around me replied, "Actually, I'm pretty lucky she's dating me."

Mrs. O'Neil would have none of that. "It's amazing that you take care of her. What a special person you are."

My boyfriend responded, "WE take care of each other. It's a good relationship."

Mrs. O'Neil was as tenacious with her praise of him as she was in trying to set me up with her son saying, "Oh, dear, there's a place in heaven for you." At this point, my boyfriend managed to escape.

I have told this story frequently over the past ten years, but it was not until this moment that a question occurred to me. In Mrs. O'Neil's mind, would my boyfriend of the time lose his place in heaven if he broke up with me? What about if he became an ax murderer later in life? And, um, did dating me erase all bad deeds up until that moment in time? I really want to know the answer to these burning questions.

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….

The Temporarily Able Bodied

Did you know that disabled people refer to those of you without a disability as the temporarily able bodied (TABs)? The lofty explanation is that disabled is the only marginalized group anybody can join at any time without any choice. You are just one event away from being one of us. Reminding you of this is supposed to help you see that we are more similar than different.

Frankly, I think there is a much more likely but far less noble explanation. It stems from frustration with a world that seems determined to not understand. It’s a mental sticking out of our collective tongues. “You just treated me like crap, but in five minutes you might be me and then somebody will treat you like crap. See how much fun it is then.”

Bitter and petty anybody? Yeah, and I honestly can’t blame us, the disabled. It helps us get through the day without biting off anybody’s head. A constant stream of pity, desexualization, underestimation, being ignored, being treated like an object, and the ever-so-fun being spoken to as if you are four can wear on a person. If we need to think of you as Temporarily Able Bodied to get through the day, then so be it. I’m sure once you become disabled you’ll understand.