Tag Archives: Amazing

Half A Glass

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This is the speech I gave at the San Diego Pride Spirit of Stonewall Rally.

 

Half A Glass

Imagine in my hands I hold a gllass with a capacity of 16 ounces and it is currently holding 8 ounces. Let’s think about this gllass as my blindness.

Some people tell me I’m amazing for taking the bus, baking cookies or living by myself. The most mundane tasks become praiseworthy because a person with a disability did them. These people would say my imaginary glass is half full..

Then there are people who feel sorry for me. They say things like, “It mmust be so hard being blind” or “Your life would be so much better if you could see.” For them, this glass is half empty,

My question is this: Why can’t it just be half a glass? Disability is a fact, but society loads it with a lot of meaning and insists on foisting that meaning off on the person with the disability. Believe it or not, when I tell people it’s not amazing that a blind person can bake, that it’s just a skill, they argue with me. Argue.Heatedly.

Now let’s think of this imaginary glass as my bisexuality. We are going to pretend I’m that mythical creature – someone equally attracted to more than one gender for my entire life. Some would describe me as half straight. Others would describe me as half gay. My question is this: Why can’t I just be a glass of water? A person attracted to more than one gender?

Unfortunately, people tend to think of us in terms of partly gay and partly straight, as if we can divide ourselves into sections. Nowhere is this more obvious than in LGBT-serving organizations, where we can acknowledge our same gender attractions, but must find somewhere else to express our different gender attractions.

Guess how well that is working for bisexual people? We are the largest segment of the LGBT community, but the smallest group served by LGBT organizations. Our isolation and alienation have led to some disturbing trentds. Commpared to lesbian and gay people, we have higher rates of suicide, depression, intimate partner violence, poverty, poor helath… The list goes on.

So, back to this glass of mine, this glass of identity. In the trans community’s fight to use the bathroom in which they feel safest, we are demanding that trans people are allowed to define their own glass– their own identity. We must extend that same courtesy to people with disabilities, who get to decide for themselves if their disability is good, bad, or neutral. We must allow bisexual people to define their sexual orientation however they wish, not insist they express it in terms of heterosexuality and homosexuality. And we must stop forcing our own definitions onto others and when people tell us who they are, we believe them.

Courage

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Whenever the word courage is launched in my direction, I winse. I am not courageous, merely a human being, trying to live my life to the best of my ability. Period.

 

Courageous people are those who do things like run into rather than away from a burning building. They have made a clear, conscious choice to do something that is optional. A firefighter could earn a living teaching history, but instead she puts her life on the line each and every day. That’s courage.

 

There are also people who do something courageous once or twice in their lifetime, like many of those on September 11th who helped coworkers and strangers make it to safety. Such individuals could have easily taken care of themselves and left others to struggle alone. That’s courage.

 

I do not run into burning buildings or help others survive catastrophes. My courageous act seems to be living. In the examples I gave above, the individuals involved had clear choices. No matter how hard I try, I cannot find an alternative option to living my life. If in living and pursuing my own happiness I have to face harder things than most, I consider that a fact of life not courage, for some roads are smooth and others are rutted.

 

While I object strongly to the label courageous, I do admit to other traits, such as determination, persistence, and strength.

 

As much as I hate to even admit it, I do display something approaching courage, but it won’t be in the way you might imagine. I have some visible scars clothing could easily cover, yet I choose to not dress in a concealing manner. From my perspective, it is my simple refusal to internalize socially normative behaviors. However, after somebody has negatively reacted to my appearance, the next time I select clothing, it does run through my mind that I could pick something else. Since I am making a choice, I guess it falls under my definition of courage. But, really, it isn’t rescuing people from buildings or carrying somebody with a broken leg down flight after flight of stairs.

Never Give In?

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In the midst of a novel, I stopped dead in my mental tracks when I read, “She had never given in to her disability.” “Given in”? As though disability were a foe or unstoppable force.

To declare that statement foreign to how I relate to my disabilities is a drastic understatement akin to declaring a drop of water the equivalent of the Pacific ocean. (How’s that for dramatic hyperbole? Hold on to your socks because there’s more.)

If the common understanding of disability is a “force” in “opposition” to me, then it makes complete sense that people think I’m amazing for walking out my front door. After all, I have made the Herculean effort to fight against something keeping me in place. No, actually, trying to push me in a different direction.

Our collective consciousness is full of entities in opposition — good versus evil, freedom versus dictatorial constraint, healthy versus infirm and even smile versus frown. No wonder we cannot escape Hollywood’s determination to continue to use disability as a metaphor for evil, a social understanding of disability as life-constraining, the notion that a physical condition is contagious and even that having a disability automatically categorizes you as unhappy. We are in opposition to our condition as good fights back evil, freedom overcomes totalitarian regimes, health is a goal we “achieve” and happy shines forth from sorrow.

What a load of manure. I’m no more fighting against my disabilities than you are struggling to keep your cells all together in the form of your body. You just are and disability just is. Fact, people. Fact.

Misconceiving

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Transgender(ed) people have an expression used to describe the way another person looks at them, sees certain identifiers they link to a particular gender and then assigns them that gender.  Misreading. 

 

An androgynous person with a prominent Adam’s apple is read as male.  If they instead had long nails and heavy eye makeup, they would probably be read as female.  In our heads, we all have traits we consider “male” and traits we consider “female.”  Based on their presence or absence, we assign gender.  a collection of traits goes into someone’s head and out pops a gender label.

 

This drives some trans people nuts.  So what if you can see their Adam’s apple?  If they call themselves female, then they are female.  Period. 

 

People with disabilities are misread in an entirely different way.    For us, it starts with a single entity – white cane, dog guide, wheelchair, prosthetic, support cane, hearing aid, use of ASL or informational disclosed – that identifies us as disabled.  From there, we are assigned traits and entire lives are created for us in the mind of another.  We are a word that leads to an entire story.

 

Maybe the word “misreading,” already claimed by another group to mean something specific, is the wrong term to use.  Maybe it should be “misconceiving,” which has the element of *creating* in its crafting. 

 

To the stranger who has decided they know what my life must be like, I can say, “You are misconceiving me.”  They might not know what I mean, but the explanation “You see my disability and then create this concept of what you think my life must be like which is inaccurate,” is far easier to give than debunking each false belief, one after the other. 

 

A broad term to convey a cognitive tendency.  Works for me.

……because

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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.

Responsibility Teflon

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I know we’ve all met that person – the one who can somehow avoid responsibility for *anything.* It is as if they’ve been sheathed in teflon and nothing will adhere to it. Ever.

The most drastic cases involve those who frame their lives in terms of things “done to them” that have resulted in bad outcomes. (Ever notice victim mentality is only present when it comes to bad outcomes?) More insidious cases exist in which individuals effortlessly float through life with nothing ever being their fault. They’re just “following their hearts” or “honoring their feelings” or “not engaging in negative self-doubt” or “practicing self-compassion.” In and of themselves, each isn’t a bad thing when done in moderation. Some, however, have raised their use to an art form. In the process, they acquire Responsibility Teflon.

I believe that perceiving me as amazing allows non-disabled people to don this same Responsibility Teflon. I’ve previously mentioned three ways non-disabled people conclude I am amazing – expecting less of me because of my disability, misunderstanding what it would be like if they walked in my shoes and lauding me for overcoming obstacles. Each is predicated on the idea that the “problem” is contained within me. She doesn’t have functional eyes, so I should expect less. If I didn’t have functional eyes like her, then I couldn’t do that. She doesn’t have functional eyes which would make that activity harder. It’s all about my biological difference.

The interesting part is that by making it all about my difference, non-disabled people have framed the situation in terms of my body, my abilities, my interactions, my defects. When it is all about me, Responsibility Teflon morphs into existence.

A crucial factor, how our society functions, is being left out of the equation. My difference only becomes a problem when my world doesn’t take it into account. Imagine if I lived in a world where my difference was accommodated by all information being conveyed visually, auditorially and tactilely. Would I be so amazing in that environment? Not really. I’d be simply another person going about her business.

I’m certain someone is now thinking, “Yeah, and you would also not be amazing if you could just see.” Following that line of argument, if all people were the same color, racism would disappear. If all people were of the same gender, sexism would vanish — along with our species’ ability to exist. Disability is a fact of human variation. Only when our society places meaning on human variation do we have things like sexism, racism and disability as individual defect.

When a non-disabled person observes me crossing a street, they could think I’m amazing for being able to do that. They could also think that they participate in a world that doesn’t take my need for auditory street signals into account. In the former, while they feel all warm and fuzzy for praising me, they are putting on Responsibility Teflon. In the latter, they are skating perilously close to assuming some accountability for the world they inhabit. You know, the same one I have to function in?

Amazing Revisited. Again.

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Don’t roll your eyes, but I’m back to that “amazing” thing. Again. This time with something new. Promise.

I get to a doctor’s office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I’ve thought about this behavior in two ways. I’m amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles.

When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as “obstacle for blind person” in their heads. Because I have surmounted these obstacles, I become “amazing.”

This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual.

I have less objection when amazing is about overcoming an obstacle. I’m not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven’t cultivated or even simply requiring above average persistence. It feels far less dismissive of…me.

Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They’re not something you can discuss in terms of overcoming.

So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It’s like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here’s your new bicycle. Ride it.