Category Archives: Taking It Apart

Comic

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One of my long-time readers sometimes comes across comics with a disability theme.  He then types up a description for me.  As soon as I read this one, I knew it had to immediately go  up here.  among other things, it is an awesome example of “You may think I’m drowning, but this is the way I swim.”

            The artist is Fábio Coala and I think more of his work can be found at

http://coala-io.deviantart.com/

            The actual comic is at

http://i.imgur.com/MY2Ys.jpg

                The description is as follows:

               In the first panel, a boy with brownish skin and spiky brown hair under a green ball cap is holding a large cardboard box with air holes.  He asks “What is it mom?”  From off panel a voice says: “Open it!”

               In the second panel, the box is open.  A yellow puppy is emerging.  It’s right front leg is missing.  From off panel the boy says “A puppy!”

               In the third panel the boy is holding the puppy looking dismayed.  He says: “Wait… What kind of a puppy doesn’t have a leg?!”  The puppy is gleefully wagging it’s tail.

               In the fourth panel the boy is storming off with a tear in his eye.  He shouts “What’s the point of a sick dog?  This sucks!  I don’t want no puppy.  I don’t want anything.  I hate you!”  The puppy looks at him confused.  There’s a pink ball next to it.

               In the fifth panel, the puppy looks at the ball and wags his tail.

               In the sixth panel, the puppy takes the ball in its mouth.

               In the seventh panel, the puppy is running with the ball in its mouth.

               In the eighth panel, the puppy falls over with a “pof!”.  The ball slips out.

               In the ninth panel, the puppy has retrieved the ball and is running again.

               In the tenth panel, the puppy approaches the boy who’s playing a video game.

               In the eleventh panel, the puppy is looking at the boy while holding the ball and wagging its tail.  The boy turns and says “You’re not like the other dogs…  You can’t play.  You’re only there for people to feel sorry for you.  Don’t pretend you’re happy.”

               In the twelfth panel, the boy takes the ball and says “Gimmie that.  Now catch… and get out of here.”  The puppy looks elated.

               In the thirteenth panel he throws the ball.

               In the fourteenth panel the puppy is running.

               In the fifteenth it falls over again with another “Pof”.

               In the sixteenth, the boy says sadly, tears in his eyes, “See, you’re not like the others.”

               In the seventeenth, the dog regains its footing.

               In the eighteenth, it lunges and latches onto the ball, happy again.

               In the nineteenth, the boy smiles, tears still in his eyes.

               In the twentieth, he wipes away a tear and smiling says “It’s no use, right?  You don’t care about your leg… You’re happy anyway…”

               In the twenty first, the puppy looks at its missing leg and raises an ear in confusion.

               In the twenty second, it returns to looking at the boy with absolute joy.

               In the twenty third, we finally see the boy’s full body.  His own right leg is amputated above the knee.  He walks on crutches saying “OK, let’s play outside.”  The puppy runs ahead of him barking.

The Culture of Silence

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A friend used the phrase ‘a culture of silence’ to refer to the normative standards of behavior, cultural beliefs, individual attitudes, social structures, and societal barriers that dissuade marginalized people from sharing their experience. Women keep quiet about sexual assault to avoid the blame and shame attached to speaking up. Transgendered people don’t discuss their gender identity out of fear, at best, of being labeled “freaks.” Poor people stay silent about their impoverished state so as to not be labeled a slacker, told they should just go find a job, or be pitied.

 
In contemplating all the times I swallow my words, I have begun to wonder what part of my silence is tact and what part subtle duress?
Then I came across a news clip about a student with developmental disabilities who was bullied by her teacher.
Watch here.
What shocked me was not that such events transpired for I know such situations are common. I was surprised that the parents went to such great lengths to prove their child was not lying. Educators relied upon the culture of silence to protect them, but it didn’t work. Thank goodness it didn’t work.

Ears

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I welcomed the new year in with double ear infections – both sides, inner and outer. First, in defense of infants the world over, I have only felt that intensity of pain once before when my appendix was about to rupture. The ear pain had me curled in a ball on my living room rug at 2:00am begging the universe to make it stop. Sobbing. Loudly. Babies, in my opinion, should scream louder.

Along with the pain, I lost significant amounts of my ability to hear. I could hear someone on the other end of the phone, but not someone standing next to me. I stopped being able to perceive the noise of my fridge for about three weeks. I was unable to walk in a straight line inside my own home. I couldn’t hear if the pot of water on the stove was boiling or not.

As you might imagine, this was a life complication. Once the pain was under control, it took about 48 hours for my brain to say, “Hey, we can navigate the outside world. Camille’s good at her job. You should be able to hear audible crosswalks. AS long as you only go to places you know…..” Around then, I stood up and the room started spinning. “Okay, maybe not if I’m experiencing vertigo.”

Once the dizziness passed, that’s exactly what I did – went out and navigated familiar places while my hearing was limited. I’m still stunned at myself. Not amazed. Stunned.

What attitude or approach achieved this … result? This is a new adventure. Wonder what it will be like. Wonder what I’ll learn.

I credit this mindset to my December reading of Crashing Through written by Robert Kurson telling the real life story of Mike May’s adventures in going from totally to legally blind. Perfectly content as a blind man, he was presented with the unexpected possibility of regaining vision with a new medical procedure. The book chronicles his decision and subsequent experiences.

To boil it all down, he did it to – excuse the pun – see what it would be like. I was presented with a perceptual change and decided to embrace it as an experience. It went well.

two months later, I have most of my hearing back, but they aren’t sure everything will return. The nuanced auditory input I use for things like “Where did that thing land when I dropped it?” is effected along with trouble discerning traffic patterns, identifying the location of an open doorway and a few other things.

I’m pretty much done sucking all the learning and experiencing out of this adventure. Fingers crossed that the steroids work.

Believe Maybe

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A couple of weeks ago, I read Frank Deford’s “An American Summer” which tells the story of Christy, a fourteen-year-old boy who moves to Baltimore the summer of 1954. Almost immediately he meets Cathryn, a twenty-three-year-old who contracted polio six years ago and now lives in an iron lung. It is an unlikely connection that leads to an extraordinary relationship.

At one point, Cathryn is trying to convince Christy to do something he doesn’t believe is possible. She asks, “Can you believe maybe?” The distinction she makes between what we believe and what we believe maybe is effort. If I believe maybe there’s a God, then I still have a question to answer and thus work to do. Believing there is a God pretty much settles the matter.

I have been struggling with the concept of hope for quite some time. It first became an issue when I realized hoping I’d get healthy was causing me to live for tomorrow and not enjoy today. Then hope got all tangled up with the lack of dating in my life. People kept telling me that if I didn’t have hope that I’d meet someone, then I never would. I argued hoping for something that was statistically unlikely was the road to insanity. After that, my life began to completely come apart at the seams and I was devoid of hope that it would get better.

Our hearts are designated the home of our emotions. Over the past four years, I’ve learned much about following mine and so far it hasn’t caused me to do something I regret. In fact, my regrets tend to stem from the times when I don’t or where circumstances won’t allow me to listen to what it says.

My heart was devoid of hope. It contained wishes, dreams and desires without expectation to tether them to reality. I think hearts learn, shaped by the negative and positive re-enforcement of life experience. My heart was taught not to hope because nothing good ever came from it and many let downs happened. What has hope done for me lately? Caused oceans of tears.

So, I’m done with the idea of hope for now. We’re on a relationship break.

in its place, I’m entertaining the idea of believing maybe. It seems far more suited to me for it allows acknowledgment of things that feel unlikely while not summarily dismissing the possibility entirely. It allows for effort, but it doesn’t have the black hole effect of trying and trying and trying and then watching all your trying vanish into some unreachable place with nothing to show for it. Instead, the trying is tempered by knowing it might be for naught or it might work.

When I think, “I believe maybe this mess my life has become can be fixed,” I do not hear from my heart, “Bullshit.” I hear an echoing “Maybe?”

Apples and Oranges

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A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late.

As he put his hand on my upper arm, he intensely said, “You need to sit and really listen to the new CD. It’s all about that.”

I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn’t connect.

It wasn’t that the music lacked emotion or that something didn’t quite come together. It’s a great CD and the artists in question conveyed their message well. I just couldn’t identify with it. At all.

I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn’t I hear it?

It took five months for me to figure it out. They’re singing about apples while I’m trying to juggle oranges.

The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one’s thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn’t quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it’s core, the music is about inner struggles to overcome internal obstacles.

My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it’s solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised.

Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I’ll meet people. That’s all within my control to fix, right?

What happens when you do all of that and the only result is frustration and a bone-deep belief that it’s not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn’t change all that much.

In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness.

So, while the musician was kind having the best of intentions to offer me solace, it didn’t work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate.

Hope

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While introducing a song entitled “Hope,” a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it.

He’s not wrong, exactly. He’s just talking about some subset of people to which I do not belong. They are folks whose “hard times” can be gotten through with the right attitude and sufficient effort. I’ve watched it happen, so I know attitude and effort work for many. I’m just not one of them.

Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can’t morph someone’s ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought.

Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes.

Perhaps the key here is what the musician meant by hard times. I’m fairly certain he wasn’t referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken.

What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people’s ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I’m left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful.

Case in point. I’m dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul?

I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I’m trying to peel oranges.

So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced.

McSteamier Does Appearance

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Grey’s Anatomy has replaced McSteamy with Mc (in my opinion) Steamier and thus one plastic surgeon exits and another moves to the forefront offering me more appearance-based storylines to critique. Aren’t you just jumping for joy?

On “The End is the Beginning is the End” (Season 9, Episode 11), James, a sixteen-year-old teenager, comes for his sixth surgery to address what he refers to as his “weird” appearance. Everyone around James cringes to various degrees about the weird label further substantiating the point I made in. Those of us with the weird face can accept it and the social consequences with far more equanimity than those around us. Why is that? And that’s not a rhetorical question.

When The Hot Girlfriend visits James, McSteamier seems perplexed and James offers an explanation that goes something like this: McSteamy told me surgery was going to get me only so far so I had to develop some moves to get anywhere with women. He said his moves wouldn’t work for me, so I had to come up with my own. I blind them with my personality. This brief explanation took me to the heights of elation only to drop me to the depths of infuriated resignation.

My personal experience of plastic surgeons is that they bank on all the negative consequences of having a weird appearance in our society – isolation, rejection, scaring children, lacking dates, getting treated like you’re contagious and… Then they offer you the infallible remedy – described in as little detail as possible — to vanquish the horrifying fate. It’s an approach of extremes selling you on the described course of action better than any ad campaign could achieve because no convincing is necessary that looking weird has lousy consequences and we’ve been taught to believe Medical Gods have all the answers. After all, they became doctors to “do good” and no self-interest or ego is involved in their proclamations. They only want what is best for us and are going to deliver it.

At no time in my life has anyone let alone a doctor said, “Surgery will only get you so far.” I’m actually a little terrified to even contemplate how that might have altered events. Would my parents have been so persuaded and determined that I needed to be fixed? Would I have been such a willing sheep? Would such an honest perspective coupled with identical experiences somehow left me with less emotional scars?

Of course Grey’s Anatomy’s writers then made me furious by implying the right behavior (moves) could overcome a weird appearance. Really? I’d love to attend the workshop that taught me that particular set of skills.

Replacement of my biological eyes with prosthetics altered my appearance in a manner socially perceived as an improvement. Since then, I have noticed significant behavioral changes in those around me. Strangers engage in innocent flirting. Children’s questions have morphed from “Mommy, what’s wrong with her?” to “Mommy, why is she using that stick?” Dates haven’t suddenly begun raining from the heavens, but stranger discomfort has drastically decreased. However, while under anesthesia, I did not receive an infusion of improved social skills nor a transplant of dazzling moves. To me, this experience argues that how I look has more power to impact others than anything I say or do. I looked weird. I look a little less weird. People behave accordingly.

In the end, Grey’s Anatomy may have mitigated the impact of it’s “If you have the right moves” perspective. With all his blinding personality, James still said, “Looking less weird would be cool.”

Disability Has A P.R. Problem

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“Blindness can be reduced to a nuisance” is a tagline used by the National Federation of the Blind as shorthand for what proper accommodation can accomplish. With adequate training, adaptive technology, and alternative formats, the barriers created by a world that functions on a visual level are eliminated and only small concerns, such as taking the time to label items, remain. The visual is conveyed via other forms of sensory input making the condition not particularly disabling. The same point has been made in relation to people with mobility impairments and those who are Deaf. The social model of disability, built around the concept that the way society works is the source of disablement, furthers this notion. Living in a world where a wheelchair can go everywhere and help is available if ever needed shapes a reality in which being a wheelchair user isn’t a huge problem. Disability rights activists argue for accessibility in all things so that people with disabilities can move through the world with the ease others take for granted — do B instead of A and then everyone can play. It is a very credible line of reasoning until one considers the dirty little secret that not all characteristics of disability can be reduced by accommodation to a nuisance. How can chronic pain be made only an annoyance? What method reduces lack of energy to an inconvenience? When a psychiatric condition impacts a life, can its effects be mitigated by the equivalent of a ramp or Braille menu? As someone who lives with both blindness and chronic illness, I know the first is reducible to annoyance and the second profoundly impacts my life no matter how the world functions. Yet even I talk up accommodations whilst avoiding mention of things that cannot be resolved in the do B instead of A and everyone can play formula. As a community, we remain taciturn about the aspects of disability that aren’t… fixable. We are profoundly uncomfortable with the idea that sometimes disability can be difficult no matter what anyone does. I’m pretty sure it’s a public relations matter. If we admit disability cannot be eradicated through accommodation and societal change, then why would the average non-disabled person bother? We need the persuasiveness of the absolute do B instead of A and all will be well. One can’t sell a car on its safety features by listing all the ways airbags can fail and one cannot engender profound social change by acknowledging all the ways that change will fail to fix the entirety of the problem. As a people, we want everything to appear complication-free, even when it’s not. Non-disabled people seem unable to swallow the idea that disability isn’t a lousy fate. Arguing ramps and Braille an ASL interpreters reduce that destiny to nuisance seems implausible. Convincing anyone that there is a way to accommodate pain down to an annoyance seems impossible. Perhaps the honesty of admitting disability is sometimes hard will ring true and then we can argue that it will be less horrific in a world that doesn’t function on assumptions of able bodies and “normal” minds. Yet conceding the hard aspects of some disabilities tends to evoke pity, a mindset many never leave for it is far easier to feel sorry for someone than to make the changes necessary to address the facets of disability that are resolvable. If we paint disability with the accommodation-fixes-everything brush, non-disabled people don’t believe us. If we are honest about some parts not being fixable, then non-disabled people see no reason to bother trying. Unsolvable problem meet unmovable rock. This is why I believe disability needs a P.R. guru. This post is for Blogging Against Disablism Day 2012 and a comprehensive listing of the blogs participating and pieces posted can be found at Diary of a Goldfish.