Lent Post #28: Bias, The Problem As I See It

This piece is a part of my book The Gimpy Monologues. If you like this one, consider giving the book a shot.

My physical limitations are very real, people might think that they get in the way, and sometimes they do. But the real problem is the way you look at me, and the way I look at you. The problem is bias. We go off to college and we take these classes, we read these books, they take us to the various times past and the one that still passes. Every teacher thinks that their discipline can change the world. And they’re only part right. Sociology, psychology, philosophy, and the sciences. All of them hold fundamental keys to human understanding with one fatal flaw. But I’ll get to that.

Wielding these books and we learn the truth, the brutality that’s befallen our forebears in the prime of their youth, we fill with anger welling up inside wanting to take down the power that is, and begin to uprise. Some think we’re pacifists, but we have the mouths and sullied hearts of war makers, gossip mongers, and the monsters that are created in the name of protecting an ideology. We stamp out racism with the same hatred with which it began, instead of looking to our left, then to our right, and realizing we inhabit the same land. I remember that hatred deep inside my heart, it found its insidious way into what I thought was my purest art. I was wrong. I called it ableism, to me the world was divided between those who had what I wish I did and the people who had taken away everything I had to give. I live in a world where Brown gave way to white, and even when that difference was out of sight it was still me versus them… Those who could walk and had all the fun, and me; the guy who was filling his heart with fire and hatred before his life ever begun. And then, I remembered my history, and then all I saw was nothing but a shattered mystery, I could finally see the whole. It didn’t matter now, ‘cause in my mind, I had no goal, except to destroy that which held me down. And I owed to the place who gave me my second cap and gown.

Now it’s time for me to drop poetry, and give you the real message. I sat in these classrooms and listened to these people and I thought they were revolutionary. They told me that I’ve been cheated, they broke down the system that did it, this showed me all the problems, all the greed, and lust, and hate. All the problems with no solutions, and anger with nowhere to go. I joined people who said they were going to change the world and I would do it with them, but I failed to see the exact same hate that welled up within them. Fire is never best fought with fire, mutually assured destruction is not protection, it’s just what it says, a form of assured destruction. A complete annihilation of the soul and psyche. So from that vantage point, I left. Off to fight my own battles, to seek and to understand. To leave this little speech, this little piece of paper, into your tender and capable hands. Don’t seek your identity within a group of hateful people that tell you you’ve been owned by another group, people are just people. If you give into that, you’ll surely be duped. There is no ultimate discipline, it’s not like they say. I wish I could tell you that there was another way, but these battles are hard and to be fought long and with difficulty, but just as much as you say you believe in me, I believe in you completely. Leave the poison behind, take my hand, and walk with me, roll with me, hobble along… We’ll change the world hand-in-hand, woman after woman, and man after man.

Lent Post 27: See the Chair, Don’t be the Chair

Tatyana Mcfadden in a race

This piece was inspired by my wheelchair. It’s a very real thing, and sometimes it even makes a good analogy for social relationships! This piece is a part of my book The Gimpy Monologues. If you like this one, consider giving the book a shot.

See the chair?
Don’t be the chair.
There are many ways to take that
It’s confusing I know
it helps me get around
but some doors I can’t go through
doors both imaginary and real
barriers of life, love, and liberty
see the chair
recognize the difference
don’t be the chair
the thing that inhibits
be the chair
the thing that helps you move
and explore the world around me
until I can get into a vivacious groove
see the chair,
don’t be the chair
the hesitation and limitation
be instead
the mode of support and exploration

Lent Post #26: I’m Not an Inspiration

This piece was inspired by the concept of inspiration porn, the calling of people with disabilities inspirational solely or in part on the basis of their disability. This piece is a part of my book The Gimpy Monologues. If you like this one, consider giving the book a shot.

I’m not inspiration. Let me explain what I mean. I know so many of you out there staring at the future me and thinking that I wrote this play, it made you think in ways you haven’t necessarily thought before, therefore, I must be an inspiration. You might be right, but that’s not what I’m talking about. Everything about what you see right here, right now… That is intended to inspire. What I’m talking about other random people who have no idea who I am, what I’ve done, or for that matter, what I have failed to do. Random strangers constantly come up to me and tell me what an inspiration I am for having overcome such adversity. To them, I say, what the hell kind of adversity are you talking about? Are you talking about the adversity I faced this morning when deciding whether or not I’d like to get out of bed now, or maybe an hour? Last I remember, everyone did that from time to time. For that, I’m not inspiration.

And then, suddenly it dawned on me. They must be talking about the thing everyone talks about, the fact that my body is the source of my adversity. Everyone’s body is the source of their adversity, uncontrollable urges brought about by chemical reactions uncontrollable by the conscious mind, and at best we can only mitigate those, not really control them. Maybe they mean the fact that my body doesn’t necessarily cooperate; if you talk to any woman who’s ever had a period, shall tell you that that has nothing to do with being disabled, because once a month her body refuses to cooperate with her, and yet she still lives with it. But I know you mean, you’d like to congratulate me because I have managed to figure out how to sit on the toilet, use it, and wipe my own ass. So in the words of the little boy in that Adam Sandler movie: I can wipe my own ass, I can wipe my own ass!

It’s thinking like this that is the real disability, it’s a disability born of imposed societal norms reinforced by unthinking masses. I’m normal, I’m human just like you. My struggles are probably no more or less difficult than your own, I cry, I bleed and I smile, just as you do. So I have a favor to ask you, the next time you feel the need to tell me I’m an inspiration, just remember… I’m not inspiration… Unless of course, something I’ve done has moved you to to do something you’ve always wanted to do. In that case, I’m an idiot these failed to realize that I am an inspiration.

Lent Post #1: A Day of Mourning

Once again, I find myself in a place where I have not touched this blog in quite a while. Lots of things have come and gone that I won’t go into here. Regardless, the fact remains that I need to get back to writing. After all, I wrote a book. And once upon a time, I thought writing a book would finally turn means that mythical beast that many have called a writer. Such a magical creature never suffers from the mundane roadblocks of mere mortals such as writer’s block. At least, that’s what I thought. But here I am, and I haven’t written a book in almost 2 years. I haven’t even really begun one… Yet! So why not start here?
As many of you know, I grew up Catholic. While I’m no longer a practicing Catholic, the season of Lent is upon us and I thought it would be a good opportunity to use it to rebuild something that I allowed the tides of life to wash from my shores. For the next 40 days (yes, I know I’m a little late), I will be writing one entry a day, and I’m going to start with this one. If you’ll forgive me a bit of rambling, there is something I’d very much like to say about lent itself before I get into the meat of this post. The way we were taught about lent as children was that we gave up something every year in order to take part in a small piece of the sacrifice made for us by the figure of Jesus Christ. Many people go about this by giving up chocolate, coffee, certain TV addictions, or what have you. And that’s perfectly fine if that’s what someone wishes to do. But I began thinking that it might be better to add something to your life that you have been waiting for the opportunity to explore. Kind of like an extended jumpstart to a New Year’s resolution, only slightly later in the year. That’s what I intend to do this year: to participate in lent is what I would call a cultural Catholic, rather than adherent to the Catholic faith. Consequently, I will be ending the day after Easter Sunday… 🙂

Now, on to my originally planned portion of the post. Yesterday, on March 1, 2017, I had the honor of taking part in a national day of mourning in remembrance of people with disabilities who have perished at the hands of caregivers, be they hired or family. There were many names, and for an hour and a half we’ve read those names is a group out loud, we also told how the people died, as well as their age. I’ve known this to be a problem in the disability community all of my life, but I had never had the experience of having it placed so plainly before me. I found myself filled with a combination of rage, sadness, and a kind of empathetic fear.

It might help if I unpacked that idea a little bit. What was the empathetic fear that I so deeply felt? It was fear in recognition of the fact that my name could quite literally be added to that list if the circumstances presented themselves. During that time, I also began to feel a kind of silent sadness at the fact that so many people will not be able to participate and lend their voices to the growing movement of disabled rights advocacy. We will not get to hear their needs, their sorrows, nor their brilliant ideas. Worst of all, these were lives that were needlessly snuffed out by people who saw these individuals as mere burdens to be eradicated by laying those burdens down in an extremely gruesome fashion. When I say gruesome, I mean gruesome. There were stories of people who died at the hands of paid killers. There were stories of people who were literally left in closets for weeks at a time to starve, neglected to suffer horrid infections… Some had their heads bashed in shortly after being brought into the world. I was left to ask, “what is the value of human life? And what is it that it means to be human?”I am left with the overwhelming feeling that certain lives are devalued merely because they don’t fit some preconceived idea, either that is carried with the individual passing judgment, or by society at large. At the end of the day, it doesn’t matter which, because these people are gone.

As my long-term followers may recall, I wrote a book called The Gimpy Monologues. At the time, I didn’t really know who the book was for. I just wrote it because I felt like it needed to be written, yet I couldn’t quite articulate why. Now I know. While I don’t want to write about disability for the rest of my life, I know that the books I do write about disability are so that an understanding grows from them. And through that understanding, it is my hope that future generations of people born with various medical conditions which present obstacles in their daily lives, will be born to a global community that sees them for who they truly are: simply another individual partaking in the bittersweet human experience. You’ll notice that in the post I have included an image of the names which were read that night. It is for you that I continue, and it is for us all that I will continue to write and to do my best to open the eyes of those around me. I’m truly sorry that I didn’t see it before.

Please forgive me.

PS. If you are interested at all in purchasing my book which I have done a horrible job of promoting on this blog, please note that you can find it here.

The Spoon Theory: Best Explanation EVER! (IMHO)

Arty spoon

Okay, so posting this might get me into some trouble, and if it does, I’ll have to take it down. But this is hands down one of the best explanations of disability I’ve ever read in my entire life. It was written by a girl dealing with lupus, but it’s extremely applicable to most other physical conditions of which I am aware. I’m kind of hoping that this lovely young woman will be inspired to write a monologue for me, but since I don’t exactly see that as being in the cards, go to her website here and support what she’s doing. But for now ladies and gentlemen I give you my favorite explanation of living physical disability, spoon theory.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

Inside the Mind of Depressive Suicide: A Gimpy Monologue

 

English: On-Air Project #116-4 from the Series...
English: On-Air Project #116-4 from the Series of “Monologue of Ice” by ATTA KIM (Photo credit: Wikipedia)

I wish I could show you what it was like,
that every day I wake up with such fight.
The voices of the past that I thought that,
they fill my soul with an overwhelming dread.
The voices shout to me with an ever-increasing agony.
And I wonder then in despair if they shall be permanently with me.
Removing the visions of corpses and results in suicide, and my own personal shame.
I wonder often as it will come a day when I will feel just the same,
same as everyone else, they seem to drift in and out.
Never contemplating the importance of their lives, nor what it’s all about.
But at the same time, feel his hands creeping up on me,
the ghost of a long dead best friend returned from the grave to inhabit my mind and to violate me once more.
His hands cold and forceful as if for some reason there is an uneven score.
In the apex of my life, my youth has slipped away
as many dead friends of those twice my age, I’m hoping for a better day.
Hoping that I don’t slipped into deaths cold embrace.
Praying that I don’t make the mistake of causing my family both pain and disgrace.
And yet I know that one day I slipped,
and I find my walls in the coat of newly painted red,
I made a mistake, when that regret.
You see? I’ve ended up dead

Bias, the Problem As I See It: A Gimpy Monologue

Early weapons models, such as the "Fat Ma...

 

My physical limitations are very real, people might think that they get in the way, and sometimes they do. But the real problem is, the way you look at me, and the way I look at you. The problem is bias. We go off to college and we take these classes, we read these books, they take us to the various times, past and the one that still passes. Every teacher thinks that their discipline can change the world. And they’re only part right. Sociology, psychology, philosophy, and the sciences. All of them hold fundamental keys to human understanding with one fatal flaw. But I’ll get to that.

Wielding these books and we learn the truth, the brutality that’s befallen our forebears in the prime of their youth, we fill in anger welling up inside wanting to take down the power that is, and begin to uprise. Some of the think we’re pacifists, but we have the mouths and sullied hearts of war makers, gossip mongers, and the monsters that are created in the name of protecting an ideology. We stamp out racism with the same hatred in which it began, instead of looking to our left, then to our right, and realizing we inhabit the same land. I remember that hatred deep inside my heart, it found its insidious way into what I thought was my purest art. I was wrong. I called it ableism, to me the world was divided between those who had what I wish I did, and the people who had taken away everything I had to give. I live in a world where Brown gave way to white, and even when that difference was out of sight it was still me versus them… Those who could walk and had all the fun, and me; the guy who was filling his heart with fire and hatred before his life ever begun. And then, I remembered my history, and then all I saw was nothing but a shattered mystery, I could finally see the whole. It didn’t matter now, ‘cause in my mind I had no goal, except to destroy that which held me down. And I owed to the place who gave me my second cap and gown.

Now it’s time for me to drop poetry, and give you the real message. I sat in these classrooms and listened to these people and I thought they were revolutionary. They told me that I’ve been cheated, they broke down the system that did it, this showed me all the problems, all the greed, and lust, and hate. All the problems with no solutions, and anger with nowhere to go. I joined people who said they were going to change the world and I would do it with them, but I failed to see the exact same hate that welled up within them. Fire is never best fought with fire, mutually assured destruction is not protection, it’s just what it says, a form of assured destruction. A complete annihilation of the soul and psyche. So from that vantage point I left. Off to fight my own battles, to seek and to understand. To leave this little speech, this little piece of paper, into your tender in capable hands. Don’t seek your identity within a group of hateful people that tell you you’ve been owned by another group, people are just people. If you give into that, surely be duped. There is no ultimate discipline, it’s not like they say. I wish I could tell you that there was another way, but these battles are hard and to be fought long and with difficulty, but just as much as you say you believe in me, I believe in you completely. Leave the poison behind, take my hand, and walk with me, roll with me, hobble along… We’ll change the world hand-in-hand, woman after woman, and man after man.