Wednesday, August 26, 2009

Obstinacy Has a Positive Side

I am (pick your favorite) determined, obstinate, persistent, or stubborn. I come by it honestly through the genetics of my maternal line. While I know it is a trait that drives those around me out of their minds, it is probably the one thing most responsible for who I am today.

I was born in rural Upstate New York with a collection of midline facial birth defects resulting in no nose, nasal airway, and eye structure abnormalities. Five hundred years ago, I would have been left in the woods to die in one of many not so pleasant ways. Even a hundred years ago I would have been institutionalized. Though I have never asked, I suspect somebody in my parent’s lives suggested exactly that when I came along. Instead, after a month in the hospital, I went home to parents and an older sister. Perhaps that choice was influenced by my mother’s obstinate streak.

By their nature, babies are determined creatures doing the same thing over and over until they master walking, speaking, putting a square peg in the square hole, and other tasks. Perhaps my persistence is more a result of conditioning for when I kept trying I did succeed. With most children the determination fades as less repetition is required to achieve goals – addition does not take as much trial and error as walking. Maybe mine simply never faded because it was still needed in order for me to successfully function.

Whether nature or nurture, stubbornness has paid off in my life. A few examples to convince you.

At age eleven, I had a skin graft leaving a large scar on the inside of my left arm. Everyone noticed it, asked questions, and thought it was unsightly. I stopped wearing sleeveless shirts and often chose those that went to my elbows. When I became a camp counselor, I realized tank tops were a pragmatic necessity, so I wore them. I felt hideous, but did it anyway. The campers often asked questions, but I kept wearing my tanks. Nothing, not even my own feelings of hideousness would keep me from doing the eminently reasonable.

In high school, my physics teacher made it clear he thought I should drop the course because I could not see the board. All the other smart kids took the class, so I refused. At the end of the year, I received the highest grade on the state-wide test and my teacher apologized.

The most profound positive impact of obstinacy relates to my body image. From the moment I was born, people around me said and did things letting me know my appearance was not acceptable. By the time I was eighteen, I knew the world was very messed up when it came to people like me. I also knew I was hideous. It impacted every aspect of my life –avoiding being photographed, shyness around strangers, assuming nobody would ever find me physically attractive, and thinking of my body as a separate entity.

In college I realized this needed to change, so I adopted the philosophy of “fake it til you make it” meaning I tried to behave as though I liked the body I inhabited as opposed to loathing it.

About the time I started liking what I could see in the mirror, I went totally blind. That through me for how could you learn to like your body if you couldn’t see what others saw? Well, you can when you stubbornly refuse to let that stop progress.

From time to time, events still make me doubt that I’m attractive. I refuse to accept that version of reality and persist until my positive body image re-asserts itself. In other words, I stubbornly wait out my emotions until they go back to what I want.

The above examples do not truly reflect the reality I have always experienced. Whether by word, deed, or attitude, I am reminded constantly and unpredictably that who and what I am is different from what is acceptable and expected. Trying to find a way to live with it is hard. To do so without becoming a stone wall is more challenging. Some days I turn the not so pleasant experiences into humor, some days I scream and still others I cry. Yet I never stop feeling because somewhere along the way I decided turning off my emotions would be wrong for lessening the amount of hurt would muffle the intensity of joy. Each time something less than pleasant happens I make a choice to continue down this road rather than walking an easier path. That alternative would not be possible if not for my stubborn nature and I would not b the me I know and love.

Usually I brush off admiration so take not of what I am about to say. I’ve managed to cope with how the world reacts to me without giving up, giving in, or rejecting the entire human race. Let that cause awe and amazement instead of the fact that I make fabulous chocolate cupcakes.

Wednesday, August 19, 2009

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 fa├žade 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.

Wednesday, August 12, 2009

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….

Wednesday, August 5, 2009

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.