Wednesday, July 29, 2009

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.

Wednesday, July 22, 2009

Lessons Learned

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

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

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

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

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

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

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

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

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

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

Wednesday, July 15, 2009

The Things People Do

One friend best summarized how strangers behave around me by saying, “Jen, when it comes to you, normal people get weird and weird people get talkative.” Often the odd things happen late at night when I am walking home from my nearby live music venue.

On Friday, I was headed down the sidewalk going for the corner. Someone stopped and asked me, “Do you need help? Can I walk you to your car?”

For a change, I thought on my feet. I wiggled my cane and said something like, “My car with this?” I then began giggling. I mean, really. This man thought I needed help because I am blind then decided I drove a car? It’s funny. Really funny.

Guess he missed the humor because he started verbally back pedaling with an apology etc. Poor man. I’d say I turned him off from helping entirely, but when I came by later he offered more aid.

Sunday night was even better. After the concert, I was standing by my seat and trying to decide if the crowd had thinned out sufficiently to leave. I hadn’t made up my mind when a woman approached and asked if I needed to be walked out. I unhelpfully replied, “I don’t know.”

There was some small talk then she said, “Well, do you want help?”

“Sure,” I replied. “I’ll just take your elbow on this side.” I waved my empty left hand. She kept standing on my right, so I made it clearer. “I need you on my left. This side.” More wagging of my hand.

She then takes my left hand. In disengaging from that, I somehow touch her breast. Ooops. Eventually I have her elbow and we take off.

The man who runs the music venue sees her walking me and must have realized she’s not being a great guide, so he tells her, “Be careful.”

From this I realize I’m dealing with a novice. I do the smart thing and sort of get a little behind her which will keep me from running into things. Mostly. We make it outside in one piece and I thank her.

We exchange names and I discover my helpful stranger is Ashley, who is apparently feeling chatty. She states more than inquires,"So, you have some sight.”

"Um, no.” I reply.

Ashley has just successfully completed one of the items on “The List of Things Strangers do When They Meet Me.” I guess people have this idea of how competently a totally blind person would function, and when I don’t behave in that way, they assume I have some vision. I guess I am too proficient to be totally blind. Who knew?

We check another item off the list when Ashley starts telling me about her deaf teacher who “had a thing in her head.” I think she was referring to a cochlear implant. Ashley goes on and on about how this woman did ordinary things.

My former neighbor Marilyn is a regular at this music venue – she actually introduced me to it. Her background is in special education and she knows me fairly well. I am grateful when she joins our little group. A discussion of guide dogs begins. Ashley keeps saying things like, “Oh, but you can’t do that.” I need to say nothing because Marilyn jumps in with, “Uh, yes she can.”

Eventually, I escape and walk home, only to discover I don’t have my house key. Attempts to remove a screen from my window so I can crawl inside fail. It is about 11:30pm and there are two people with a spare copy of my key in the neighborhood, but I know I will wake up the closer person. The other is a night owl like me, so I call. She is up and I head back out. I am just crossing the first part of an intersection when Marilyn calls, “Did you forget something?”

“My keys,” I groan. “I’m going to get a spare from a friend.”

Apparently Ashley is still with Marilyn because she then states, “You’re going to need help getting there.”

Marilyn saves me again. “She knows her way around here pretty well.”

Ashley’s parting remark is, “Make sure you listen for traffic.”

I guess I would otherwise ignore what my ears perceive and walk into an intersection without thought. If I did that regularly I would have long ago won a Darwin Award posthumously.

With the same reliability as the sun rising, I will have another encounter to share soon. Since I am flying east to see my family, the chances are doubled. Airports make people crazier than usual. Actually, I think it amplifies their personality because nice people get nicer as well. I once met a man on an airplane, so you never know.

Friday, July 10, 2009

Yoga -- It's More than Downward Dog

I’m taking a yoga class that has brought more into my life than knowing how to do downward dog. Aside from me, the class is entirely sighted and I think I’m the first blind person any of my teachers have instructed. They have worked hard to integrate me into the class, going above and beyond. I’m fairly certain that most, if not all, of my classmates have never known a blind person and they have needed to adjust as well.

The class itself is great and seems to be helping my body grow stronger. The social aspects of attending a class are a different story. At first, I had little interaction with my fellow yoga enthusiasts. When politeness dictated speaking to me, my classmates did, but there was no voluntary interaction. Yet they freely chatted with each other. That phase lasted about 2 months. Then one person actually introduced himself and asked me what to do if he was setting his mat up next to mine. I indicated he should say something and including his name would be helpful. He did that once or twice, seemingly shifting the tide because people suddenly voluntarily interacted with me.

It started off slowly, with somebody taking the blankets I was carrying and returning them to the shelf because she was closer than me, followed by a hello when I encountered somebody at the mat closet. Then, insanity erupted. People suddenly and simultaneously got the idea that helping me navigate around the room meant putting their hands on various parts of my body, not saying a word, and gently nudging me in the direction they thought I was headed. It happened A LOT. In case it’s not clear, that is NOT a good idea. It’s creepy not knowing who owns the hand, it’s disconcerting to suddenly be touched without warning, and it can be dangerous if they think I’m going one way when I’m going another. I was so flabbergasted that I didn’t know what to do.

One of my neighbors is also in the class and he is my ride, so I asked him. He told me people were only trying to help and my instinctive solution of announcing to the entire class the proper way to help would go over badly. He thought everyone would go back to ignoring me. I let the problem sit in the back of my head and tried to cope with the behavior.

Then, it disappeared. Entirely. Without warning. I have yet to find out why. There has also been a slight decrease in voluntary interactions with me. Obviously something happened.

Now the latest new disconcerting behavior. Looking back, I know it has been growing over time, but today it reached the level of irritating. For a while, my instructor has been thanking me – and only me --for coming to class as if I’m doing something exceptional. Other people have taken up similar behaviors like saying, “It’s so great to see you in class.” I also noticed people say hello and goodbye to me, but otherwise I’m not sought out. Furthermore, I am getting special treatment because I’m blind that goes beyond what I need. Today, I began to do this backbend thing and the instructor made somebody who was in my way move, even though she was there first.

I have to ask this: What’s so profoundly amazing about a blind person doing yoga? It’s yoga, not curing cancer. And, if it’s so incredible that I’m in a yoga class, doesn’t it follow that people would want to talk to this paragon of accomplishment? And if being blind means people need to cater to me, I want the catering behavior to be real human conversation, not simply relocating so I can stay put.

Sometimes I truly feel like a space alien suddenly dropped on earth. I don’t fit anywhere, people do the strangest things, and reactions seem out of proportion to my judgment of the situation. I know my classmates are good people. I know they are trying to be kind. I even know that the biggest problem is that they simply do not know what to do. But, um, the road to hell is paved with good intentions. I would think more than three months of my presence would have gotten us past this point. I keep thinking I should do something shocking or say something provocative to snap them out of their current mindset and force them to see me as a person. Maybe if I went to class naked?

Wednesday, July 8, 2009

Independent? Yeah, right.

In honor of the 4th of July, some of my thoughts on independence.

Remember all those “rags to riches” stories we covered in high school? They represented the pull yourself up by the boot straps mindset that characterized the United States in its infancy. The American dream immigrants absorbed was that if they worked hard enough and relied upon themselves, they could achieve prosperity. And to many that was the case.

That self-reliant mentality of determination has become a major thread in the fabric of our culture. We want our welfare mothers to stop needing governmental support by sheer force of their will. WE want our homeless to find jobs and get themselves off the street. And, of course, we still have “rags to riches” stories such as the Will Smith film “Pursuit of Happiness.” Nothing captures our attention more than someone triumphing over monumental obstacles propelled forward by the force of their own spirit to achieve affluent success. Nothing garners our censure more than somebody who wants aid we have judged they don’t need.

Like many disabled people, I was raised on the notion that I should always strive for independence needing as little as possible from others. To a large extent this has served me well whether in school or life. But – and you knew one was coming – there is a flipside to it that gets in my way.

I loath asking for help. Actually, I feel as though I have failed at being independent even when I am simply asking to be told when the walk light turns green. I should be able to take care of myself without needing anything. Ever. Furthermore, when I ask for help, I know I am perpetuating the idea that disabled people are helpless. So, not only am I flunking Independence 101 but I’m screwing up the world for other disabled people. Ridiculous? Yes. I never claimed to be rational 24/7.

I used to console myself with the concept of interdependence. Within the disabled community, the argument is made that nobody is truly independent as people rely on others to grow the food they consume, make their clothing, build cars… The list goes on. Disabled people simply need less common forms of help. The human race is interdependent forming a giant network where one person fills another’s needs and that person goes on to sustain another. No individual could exist in total isolation. Even Tom Hanks needed Wilson. So, if I need help that’s just a part of being human rather than a sign of weakness or failure.

Lately this consoling line of thinking has no power to sooth me. Humans are interdependent and, like the rest of you, I need somebody to harvest the grain and package it for preservation. It seems, however, that within a framework of interdependence, people are mandated to be independent. Nobody is expected to survive without grocery stores and washing machines, but they are required to not need rides to the vet, assistance with grocery shopping, a guide across a crowded room etc. I fall into the category of dependent and it makes me scream. Loudly.

People sometimes try to make me feel better by saying something like, “But, Jen, you can’t see. Of course you need help. Nobody expects you to…” And there is the dreaded word – expects. I don’t want there to be a set of expectations for everyone else and then one for me. Down that road lies my insanity and a set of different and ultimately lower expectations for disabled people. Obviously it’s beneficial when people don’t assume I can see. If it stopped there, that would be fine. However, from that point people tend to make additional assumptions like I cannot give driving directions, cook a meal, or pass physics. Such conjecture results in situations like having to fight to take physics in high school. Besides, who wants to be thought of as less competent? Who wants to constantly need to prove themselves capable? Definitely not me.

I have no idea how to resolve any of this. My logical brain knows there is nothing inherently wrong with needing help – with being dependent on others to survive. Yet I cannot escape my socially ingrained feelings about how if I just tried a little harder, exerted just a little more willpower, pulled on my bootstraps with more strength I could pass Independence 101 and be considered successful.

Wednesday, July 1, 2009

What's your favorite scar?

Across the street, there is a local live music venue I have come to haunt, drawn not just by the wonderful sounds but the intense emotions I absorb through every pore. Sometimes the sentiments touch tender places – after all I am single, in my thirties, and carry life’s baggage. On this evening, though, it will surpass anything I could have conjured and I have an overactive imagination.

The singer-songwriter--guitarist begins setting the scene for his next piece by asking, ”Anyone have a favorite scar?”

I am extremely proud of myself for not scrunching down in my seat. Not that I can hide as I am in the front row. From birth defects and the corrective efforts of the medical profession, I am blind and have what can best be described as an asymmetrical face. My body is littered with scars, some not covered by clothing. Simply putting scar and favorite in the same sentence has stopped my thoughts as I hold perfectly still.

Though laughing, nobody in the eight person audience answers. The musician decides to take advantage of the intimate setting. “I’m going to go around the room asking each of you.”

While I am grasping at shreds of composure, my internal-observer suddenly stands at attention, rubbing its hands together. Tonight’s inner torture will apparently be interesting material for analysis.

The singer-songwriter-guitarist asks his prize pupil. “What’s your favorite scar?”

The twenty-three-year-old woman replies, “I only have one in my eyebrow.”

“Amateur,” I think while the performer coaxes, ”From?”

“Childhood accident.”

The interrogation of the audience continues. Everyone has a story about a random or not so random accident. WE never even approach the realm of emergency surgery let alone something planned.

Even my internal-observer is silent, unable to pick one of my scalpel creations, with memories of pain and trauma clinging to it, as favorite. Could that mountain be scaled, merely telling basic facts would kill the mood. If asked, I might choose one earned by actually living, best loved because it was not caused to improve my quality of life. This would cause the same bucket of ice water to be dumped over the laughing group.

The story of one fellow patron grabs my attention, “I have a favorite scar, but the story is disgusting.”

“And?” urges the singer-songwriter-guitarist.

***“Well, nobody told me not to put a band aid on a wet wound. Once everything had dried, it needed to be picked out from the crust.”

Now I remember suture cleanings where hydrogen peroxide was used to soften blood before it was flaked away by cotton swab. I yank my thoughts away from that journey down memory lane.

Then, the internal-observer part of my brain announces, “Just imagine, if you are reacting like this, the female protagonist in the novel you’re writing would also respond intensely to tonight’s events. It would show how she feels about her own scarred body. There is also an essay in this about how society perceives scars differently based on how they are attained.”

“Gee, thanks,” I think. Whirling in my mind are fragments of memory each connected to one of my twenty-six surgeries and the tangible reminders left upon my skin.

Meanwhile, the singer-songwriter-guitarist has questioned everyone in the room. Well, everyone but me. The moment is perfect in its uncertainty, as my mind suddenly empties. Should he call upon me, I know only gibberish will pass my lips.

Then, he begins to speak, telling his own story before picking up his instrument.

Again my internal-observer speaks. “I wonder if that happened because he doesn’t know how to get the attention of a blind woman without using her name?”

Ignoring the latest comment, I lose myself in the writing possibilities, soothed by the creative process.

After the performance, I cluster with some other patrons and the evening’s performers. Through the conversation, I locate the singer-songwriter-guitarist and, looking in his direction, ask, “Hey, can I steal that thing about favorite scars? It inspired a scene in my novel.”

As soon as the words are uttered, my internal-observer is resurrected. “Did you ever think that realizing you were in the audience, while he joked about scars, might upset the man? I know you heard him speaking about depression so intense he could only sit in his underwear watching movies. Are you trying to cause psychological trauma?”

The singer-songwriter-guitarist replies, “Sure.”

My internal-observer applauds, “He understands more than I expected – no backpedaling or apologizing. Unless, of course, you don’t look as scarred as you think you do.”