Beyond Anger's Reputation

Anger has a bad reputation. It is associated with such negative emotions as hate, jealousy, ridicule and disgust. It has been linked to outbursts of shouting, abuse, violence, rape and destruction. Anger is associated with ulcers, high blood pressure, and heart attack. It has no redemptive value whatsoever. I've been struggling with this assumption of anger as a negative emotion. While it can lead to less healthy and helpful feelings, is getting angry entirely bad? Anger might sometimes lead to bad behavior, but is that always the case? When TABs do something ridiculous, I feel angry. Talking about the event later, even when I use humor, my anger is apparent to many. Based on anger's bad reputation, my response to suboptimal TAB behavior has been called into question. "Jen, you are so angry. Why is that? It can't be good." Oh, really? Can't it? I live in a world where my value is underestimated and who I am as a person completely misconstrued on a routine basis. I am subjected to a lot of actions I dislike. Furthermore, my life is shaped by these attitudes and assumptions. (If nobody sees me as datable, then bottom line is lack of sex. I'm pissed about that.) There is an awesome quote by Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” In other words, getting angry at a world that sees disability as ours does is not a bad thing. Getting angry at sexism, racism or homophobia is not a negative state. It is healthy to perceive societal sickness and have a negative response to it. What is not alright is to be eaten up by the anger so that you become an angry person. It is equally undesirable for the anger to lead to health problems. Finally, if anger fuels bad behavior, it is not a good outcome. The question then becomes whether or not the anger is healthful or harmful. My anger about society's attitudes and behavior surrounding disability feels like a clear, cleansing presence. A person does something ignorant and on my good days, I become filled with a bright light. It burns away all the potential negative beliefs I'd otherwise internalize. To me, the "bad" response to TAB ignorance is to think the world is right. That leaves me feeling worthless, small and useless. It feeds depression, low self-esteem and a sense of pointlessness because if they are right that I am less, what is the point of life? Sucking up resources when you give nothing positive back in return seems wrong to me. Anger, though, clears out the emotional dark. Moreover, it fuels my desire to change the world. Anger is what makes me educate those I encounter with suboptimal beliefs. Anger keeps me trying even when it's the fourth time in twenty-four hours that I've been treated like I'm three. Anger keeps me writing and talking and explaining and trying to change the world. My passion –the thing I want to achieve above all other things in my life – is altering how society views disability. Anger keeps me trying to do this. It is motivation and feeds my hope that change will come. It doesn't weigh me down. It lifts me up. I can understand viewing anger negatively when the impact on the individual is harmful. How, though, is my anger doing me or the world around me harm? A fire can burn. A fire can be a warm, comforting presence. Who is to say anger isn't the same?

Getting My Mad On

For the past two weeks, I have been trying to avoid the terrifying thought that the last dose of anesthesia zapped the writing part of my brain. The mechanics were possible with words forming sentences and sentences becoming paragraphs, but the unnamable quality making words into more than the sum of their parts was beyond me. Fortunately, as the past tense indicates, I got my mojo back. In the middle of a concert.

I should probably thank the musician who caused me to lose my temper waking the writing part of my brain from its slumber, but I'm not sure it would have the desired results. "Time after time, I have heard you put down your looks and while I assumed you were probably making it seem worse than the reality, I concluded you were probably of average looks. Then my friend informed me that you are adorable. I sort of lost my temper which finally woke up the writing part of my brain that I thought had gone into a permanent coma. Thank you so much for helping me get it back." Yeah, that would backfire.

On the surface, my anger seems simple to explain. This man puts himself down in order to get positive feedback from others. Immature, but he's twenty-seven and male, so it's understandable. The fact that he is making people feel sorry for him reinforcing our society's obsession with appearance equally justifies my anger, but also doesn't quite cover it.

No, I got my mad on because he seemingly hates his body more than I dislike mine with far less reason. Every day in a myriad of ways I am told that how I look is unacceptable. I invested and continue to invest a great deal of time and energy in counteracting that message. In the past year, circumstances have forced me to integrate loss of eyes and the advent of prosthetics into my body image and I can even see the light at the end of that tunnel. I work my backside off to have feelings about my body separate from what I'm told to think. The effort is completely worth it because most of the time I walk through life happy with myself.

Then there's this adorable twenty-seven-year-old who referred to himself as ugly. How ungrateful and lazy bringing new meaning to the term 'self-deprecating.' I truly would like to shake some positive body image into him. Jump up and down until he understands what he has and starts valuing it.

Please don't misunderstand. This isn't about one of us having it 'better' or 'worse' than the other. Simply put, I am proof that you don't have to accept societal beliefs about appearance. Why, then, is he doing it? For that matter, why does most of the human race do it?

Maybe I'm incredibly fortunate to have lived at the edge of socially acceptable appearance. It allowed me to clearly perceive the subjectivity of our standards of beauty and how they are imparted to us. Then again, there are tons of people who also inhabit that extreme edge and they pursue changing their appearance with single-minded determination. Perhaps the combination of blind and unusual looks offers the answer. Whatever the case, I am truly lucky to have found a way to not hate my body.

Back to the musician. What can I say to someone like him? Offering my own experience up as an example of "It can be different" would probably engender pity not elucidation. Telling him he's adorable would simply re-enforce his behavior of putting himself down.

Guess I'm stuck listening to his put-downs and offering up prayers to whatever higher power is out there that he one day gets it, puts the sentiments into a song, and changes the world by playing it everywhere.

It's in the Eyes

[This is a follow-up to Eyes and I.]

Having matching prosthetic eyes has been both what I expected and anything but what I predicted. Though I know I made the right decision for me, I have yet to feel comfortable with this new version of myself. And there's absolutely no forgetting they are there because they make themselves known in countless ways. For example, over the holidays I discovered that your eye lids don't like touching the freezing surface of acrylic. It's like touching any mucus membrane to cold plastic. Ugh.

There are moments when I forget they exist and go through my life pretty much as I did prior to all this eye craziness. It's peaceful to just be the me I've always known. Then some physical reminder will transpire and I'm back to consciously knowing I'm different from before. I pause during the day and take deep breaths trying to inhale a new self-concept that includes these eyes that I try to not view as other. They might come out, but they are me. Trying to wrap your mind around that is not exactly easy.

The other mind-bending aspect of this is other's reactions. Actually, it's the lack of reaction. Friends who have known me for years have literally not been aware of the change. Apparently the ocularist made eyes that so fit me that they look like they've been there my entire life. Since I'm not sighted, I can't exactly judge what superficially seems to be a deficiency in observational skills. Not noticing? It blows my mind each and every time it happens.

Based on who has and has not noticed, I have come up with a determining factor – how the person felt about my appearance before. I suspect those actively disturbed by it are aware of the change because they are aware of how I look in general.

Part of me worries that those who do not see changes in how I look may have gotten to a point where they don't really see me anymore. Did that "not seeing me" happen as a coping mechanism for being around me? The idea that people must not truly see me to be comfortable around me is upsetting and all too familiar.

Then we have changes in behavior. One man who I know in a wait staff capacity suddenly became much friendlier, making certain I knew his name, tossing off "good night" or "take care" when I walked past him out the door, and trying to strike up conversations. I'll admit it freely. My response has been polite indifference. Personally, I think he's lucky I haven't given him a lecture on not treating people differently based on how they look.

And of course there was the "beautiful" incident. I encountered an acquaintance who hadn't seen me in months. While it took a minute for the difference to register, when it did her reaction was the most intense thus far. She said, "Oh, wow, your new eyes. They look great." Then her voice changed as she cupped my cheek in her hand and said, "You look beautiful." I held back, "I looked beautiful before, too. Glad you finally noticed."

Finally, the other day I am pretty sure my request for the Cheese Man to go above and beyond was met because I asked in a funny way, tossed my hair, and smiled. Never has that happened to me before. There's a certain heady power in it that I hope I never exploit.

So has this changed my thinking about anything? Yes. It dawned upon me recently that I am walking around with less about me that gives people pause. I have long posited that physical differences such as scars, abnormal features, or deformed eyes loom so large in other's perceptions that they are unable to see the individual. Not only are my physical charms beyond their ken, but they don't really notice my intelligence, sense of humor, or quirky personality. My physical difference blinds them to who I am.

Now with my "normalized" appearance, there is less to kidnap other's awareness. This will shape my interactions in ways I cannot ever know for such a thing is impossible to assess. Its impact on dating does seem clear to me. With less obscuring me, people will have a better chance to know me which I find disturbingly wrong, but nonetheless my new reality. On one hand, I will never know if a person would have found me attractive before. On the other hand, I won't object to an increased chance of romantic entanglements.

I mourn the loss of my old appearance. It taught me so much about society and human nature. With my new eyes, I am now experiencing the world in a different way. Much of it makes me even more convinced that societal standards of appearance are wrong and need to change. If anything, I am more motivated to change the world.

Happy Blogiversary

As of today, I have been writing this blog for a year, hence the title. At the outset, I was not focused on how the experience might effect me, rather on how it might impact others. Looking back, because even a blind person has 20/20 vision in hindsight, I am mostly aware of lessons learned and changes within myself.

Chronic illness has stripped away awareness of my own abilities and limitations. Can I reliably commit to something that happens every week? Posting entries regularly through the past year of ups and downs has shown me I can stick to a schedule and meet commitments. In the process, I have let go of my tendency to stress excessively and be hyper vigilant. AS the quality has sometimes reflected, I even have (gasp) composed things at the last minute. With such knowledge of my boundaries and abilities, I know I can take on a bigger commitment without falling flat on my face.

I've also discovered I like positive feedback. Whenever one of you posts a comment or I gain another follower, there is some cheering in my house. Praise for something more significant than crossing a street feels great.

Back in 1999, I stopped directly contributing anything to the disabled community. As my energy has increased, I felt guilt for not doing more. I would consider some possible task to undertake only to stop because it felt too huge and I felt ill-equipped. This blog filled a specific drive I possess to change how the world views disability. While it does not reach the masses I would like, it does contributesomething and reaches somebody. To be horribly cliché, I'm following my dream – my heart. Finally.

And then there are the shifts in my perceptions and thinking this experience has evoked. There are a ton of articulate, thoughtful, and spirited disabled people out there saying more or less what I say. At the same time, I have come to know that TABs are not receiving the message. The gulf is somehow wider and deeper than I imagined. More plainly than ever before, I see that only a specific bridge can connect the two sides. Most importantly, I have a clear mental image of how to create that bridge. What I don't know is how to get TABs to pay attention long enough for me to begin. It's like I know steps 3 to 10, but I can't elucidate steps 1 and 2 in my mind.

I think the most surprising result of writing this blog is my take on the word "broken." I just reread my first entry What's Wrong with the Word Broken? and find all it says to still be true. However, I have a more complete understanding. Some people seem to need the concept of broken as applied to themselves so they can conceptualize a kind of rebuilding or rebirth. "I was broken, but now I am whole." It strikes me that integral to this is distinguishing between the present good state and the past "broken" one. It's about acknowledging effort and embracing progress. It's about what it means to say, "I am no longer broken."

I have also discovered something more fundamental than the logic and reason I used to establish my perspective a year ago. Humans are resilient. I would rather focus on how our spirit can weather any storm than how it might shatter upon sharp rocks. Maybe I just like the imagery of something that withstands any force leveled against it. Maybe I am not psychologically capable of even considering humans can break because I fear acknowledging that fact will give my spirit permission to fall into pieces. Especially right now, falling to pieces is not permitted.

I want to leave you with a few questions to ponder on your own. How did you think of disability before beginning to read this blog? Has that changed? Even if you're a friend of mine and have already been educated by me, have there been subtle shifts in understanding? Do you interact with disabled people you encounter differently than before? Do you tend to notice Braille, ramps, and other aspects of accessibility more? Do you discern ways disabled people are excluded more?