Trying to Write, Love & Live

On Learning, Changing and Waking Up.

2016-01-16T18:33:00.000-08:00

My perspective on my own disability and Disability Rights has changed a great deal since November, when I started working as a Housing Advocacy Associate at Access Living (a disability rights non-profit in Chicago). I read a lot about what people like me had to accomplish in order for me to experience the level of comfort and inclusion I do now and did in school. I learned that in order to convince Chicago to make city buses accessible, for example, individuals chained themselves to buses. I learned that the only reason the 504 education law was passed to protect disabled students was because in 25 disabled people and their allies moved into a federal building in April 1979 for 25 days. If they hadn’t done it, we would still be in “special schools”. I learned that several lawsuits had to come to fruition before citizen with disabilities were thought of as able to live outside of nursing homes and that at least in Illinois, people still have to fight to stay out. I also learned about the many systems still in place that make it very hard for those of us with disabilities to work, earn money, and live as independently as possible. Poverty keeps populations marginalized—and 70% of individuals with any kind of moderate disability live in poverty. I started realize that I have felt guilty about my Cerebral Palsy for my whole life and that, that shame has made a bigger contribution to my self-destructive behavior than I wanted to admit to myself. I was mad. I still am I guess.

I began the depressing process of looking back at my life and realizing how many unfair things in my life happened because I was born crippled. The saddest part to me was that I had expelled so much energy convincing myself that my CP had nothing to do with any of that unfairness. I had convinced myself that the people I was dealing with weren’t like that, which in head made a lot of shit my fault. I was so afraid of becoming bitter about my disability that I became ashamed of it.

I don’t think that all of the people who made assumptions, ignored me, or excluded because of how I get around are ableist. Some of them, were people who love me. In fact I think most systems are ableist but most people are not. I think these people are on most levels do not realize how quickly they write off subconsciously disabled folks because they were accidentally taught to, and of course we’re not alone. It not because able-bodied (Straight? Financially secure? White?) mean to hurt people Hell I’m 27, disabled, and I had ignored all of this in the name of being positive.

I suggest you learn about, really, really learn about the marginalization of disabled people and other oppressed groups. Start making decisions consciously, education is the only way to do that.

One More Girl's Plea to Turn on The Lights.

2014-09-02T21:18:00.000-07:00

I have written several openings to this post about my struggle with mental illness: The day I was put admitted to the psychiatric floor, I did my hair. OR: One day, I decided to count the number of lies I told, and got to thirty before I was home from school. OR: At age 22, I threw the kind of hissy-fit you’d expect from a toddler, because my friend had to go to work; snot and tears thinly coated my face. I was shaking—I was screaming. The problem with each of these options is that then of course I have to tell a story, and I hate each of those stories. The stories that begin with those sentences embarrass me. They exhaust me and they make me feel like maybe the people who know them will disappear from my life.

The truth is that as involuntarily as developed Cerebral Palsy shortly after birth, I developed at some point in my early life, an unrelenting fear of the people I love going away. It is anxiety that is so enveloping that admitting to its existence in this way is making me feel slightly sick. I have a loving family, and although my childhood wasn't without loneliness or pain, it didn't cause this. Most days of my life have been free of reasons to complain. My anxiety is as close to innate at something can be without meeting the word's definition. I am surrounded by wonderful people, who I know love and want goodness for me. I want my friends and my family who may read this to know, they did nothing to create this in me. My supporters are the only reason that now I live, usually happily, with my anxiety.

Nobody built me this obstacle, but I certainly did not choose for myself. I do not want to feel like an elephant is sitting on my chest when I have to ask for help. I don’t want to close my eyes and remember everything I said in the last month while my throat feels like it’s shutting in shame. I wish my stomach thought of honesty as the best policy. I have sought effective help, and I am okay. Lots of times, I’m better than okay.

Because I have physical challenges too, I hope I can offer a somewhat unique prospective on these matters. I know undoubtedly that the last paragraph I wrote would be superfluous in a piece regarding CP. Society understands that I can’t change my legs, my balance, or the way my voice sounds when I get excited. If a stranger tried to imply that I could, onlookers might call them crazy. It’s different with the other stuff. With the other stuff, explaining that at times I am helpless to it makes me the crazy one… I promise you on my puppy, I cannot control either condition.

This of course does not mean that I am not solely responsible for my sometimes absolutely horrid behavior while in the throes of my anxiety. Like it would be stupid and selfish of me not use a walker and to make everybody wait around while I crawled, it was stupid and selfish me to go so long without seeking help. Humans act stupidly and selfishly when they are trying to avoid being judged-- being labeled. The irony is not lost on me. Monsters, as they say, live in the dark.

Here’s hoping the world turns the lights on soon.

On Inspiration Porn

2014-07-16T16:29:00.001-07:00

Typical porn is bad for numerous communities partly because it sets completely unrealistic expectations of the human body and sex, and also because its characters are almost exclusively arc types such as “ditz”, “vixen”, and “clueless man who cannot help himself”. Inspiration porn which is currently a hot topic in the disabled community, while milder, is similar. This term refers to media that exploits people with disabilities by portraying the ordinary things we do as extraordinary, and by depicting all of us as perfectly innocent. (See examples here, here, and here)

Many readers may think: Stories and pictures like that are well intentioned and even celebrate people with disabilities. Why would anyone be offended? This is valid, intelligent question. I hope my response is valid and intelligent.

Like pornography creates restraining labels, inspiration porn places people with disabilities into in boxes usually marked “angelic”. Fitting into that box is obviously impossible. I like to think my C.P. has taught me a lot, but I can’t compete with Tiny Tim, and because people are naturally dynamic and multidimensional, that’s not even something a clearheaded society wants. We often learn our most significant lessons after acting inappropriately. All people, regardless of ability, deserve opportunities to screw up and learned from it.

Perhaps the weirdest, most painful thing about inspiration porn though, is that unlike X-rated material, which often makes sex look sexier, women look more flexible, and men look more toned, inspiration porn lowers an able bodied viewer’s expectation of disabled people. It teaches them to be impressed when one of us goes to work, or even gets out of bed. When those around us do not expect that we will achieve normalcy, it is difficult to believe that we can. I do not subscribe to the idea that people rise to whatever level the majority says they can reach. It is undeniable however, that knowing that strangers, and sometimes our loved ones see us as incapable, definitely depresses those of us with physical challenges, much like the unrealistic goals the porn industry sets for young women has depressed generations. Undoubtedly, images of women being tied up, or of couples performing a sex-acts, emaciated, while hanging upside down, are much more detrimental and dangerous than a cheesy-captioned picture of a wheelchair user; there is no arguing that. The truth remains: you can only be pushed down so many times before you just lay on the floor.

Most everybody understands the appeal of watching disabled people legitimately succeed. It is fun to see people do something you thought they never could. I know that life is, in some instances, more challenging for people like me. So, if you’re blown away by a guy with no limbs climbing a mountain, I get it. What I wonder is how the same people who are shocked that I have been employed, made friends, or even that graduated high school, want me to smile through every experience. It isn't fair to assume that I am inept just because I walk funny, and it isn't fair to expect me to be the picture of kindness either. My knock-knees and horrible balance never make me want to stay in bed all day. Battling those crazy assumptions sometimes does. Inspiration porn is one of the many reasons I am engaged in that battle.

Almost everyone in the world means well. Sometimes, they just can’t tell how tired others are. Maybe this will post help someone understand. That would be awesome.

On Pet Peeves

2013-09-08T17:30:00.001-07:00

It drives me crazy when people mumble. I almost involuntarily judge others for saying “I seen it”, as opposed to “I saw it “or thinking that “why for?” is an appropriate question. I have a hard time going on second dates with men who talk about video games for more than thirty seconds, but I like to discuss novels, movies, and trashy (and not-so-trashy) television shows. I simply do not believe anyone who says they never fight with their friends or lovers—and it irritates me that anyone would assert that. I could list petty pet peeves I have for hours… but nobody would give a damn. They all have their own lists of annoyances, and many of them are probably habits of mine.

If my life can be compared to that of the general population this means two things:

1. We should not dwell too much on what other people do wrong. They get under our skin, like we get under theirs. As long as they’re relatively respectful, truthful, and tolerant, all the other stuff should be looked over because they are forgiving our shortcomings, too. If that nice, honest, accepting person enjoys some of whatever we enjoy, and usually makes us laugh, we have a friend. If we find that friend physically attractive, at least most of the time, and feelings like butterflies, or somersaults or some other sensation that does not normally occur in otherwise healthy stomachs are felt, we can become lovers. If we are great friends and lovers for a while, hopefully we can subconsciously ignore the mumbling, the boring conversation, and the horrid grammar.

2. We can stop berating ourselves for the faults we know we have that may irk our friends, significant others, coworkers, family, or any stranger we may meet. We excuse their stupid quirks way too often for that. As long as we do our best to be respectful truthful and tolerant, they should accept us. If they can’t, then we have to surround ourselves with people who can.

Of course, life insists on being more complex than these guidelines suggest. Everyone has different definitions of respectful and tolerant, and even of honest. If we’re lucky, the individuals who raise us care enough to pass down their convictions. Painful, attitude-altering moments force us to be incapable of attempting to be compassionate and open-minded, and make us feel like lying is our only choice. When we are in that messy psychological state, it is virtually impossible for us to avoid focusing on their pet peeves. And, let’s face it; I’m a pretty fortunate girl, so it is entirely possible that my life should not be compared to that of the general population. I think when am in what Mad-TV’s Stuart (the star of their only sketch worth watching) called “my dark place,” it is important to try to remember that in spite for everything, those two things are true… Nobody really cares what bugs me and I shouldn't care either. What matters is to try to do and be good. As always, my hope is that it will help somebody else to read the thoughts that help me.

On Hopes for the Future

2013-05-21T06:32:00.000-07:00

Dear Future Child of America,

I hope your whole family has the ability to take care of themselves, and meet their medical needs. I hope you are well-fed. I hope you go to school and never worry if an act of violence will be committed. I hope you feel like advancing your education is possible, and employment is probable. I hope you come into a world that makes you feel significant and safe. If you do not, none of the other fluffy hogwash I am going to tell you that I wish for you matters at all. But, I’ll ramble anyway.

I hope you grow up proud of the people from whom you came. I hope you experience the comfort of deeply-rooted family tradition, and that those traditions are among your fondest memories. I hope you respect your parents because they taught you to respect others. I hope you respect your siblings because they have forgiven for all the petty crimes you committed against them as a kid, and enjoy you. I hope you're lucky enough to get to experience the adults of your childhood well into your adulthood. If you do get that fortunate, I hope you realize what a gift it is. It is completely natural for the gift of family to annoy the living hell out of you though.

I hope you go through junior high and high school without too many emotional scars from bullies or friends who become jerks. I hope that you hold onto childhood friends as steadfastly as you do those traditions I wrote about. I hope you make new friends in every phase of life, and when you find good ones, forgive them as if they're family. I hope you make your friends laugh, and trust them to cry with you. I hope you stand up to good friends and allow them to stand up to you. You'll lose some friends along the way, because people are weird (yourself included). I hope you hug the ones you keep.

I hope you think you are good looking because life is easier if you do. You probably won’t though. So, I hope you know three lovely individuals who you actually believe when they tell you they think you are pretty or handsome. I hope no one ever gives you a definite definition of “good-looking”. If someone does, I hope you ignore them. I hope that people have healthier bodies and minds by the time you realize that both bodies and minds can be sick.

I hope you feel sexy often, when you’re old enough to feel sexy. I hope that people stop thinking that sexualizing you at three is acceptable. When you are an adult, I hope you enjoy sex guiltlessly, with whoever you choose to sleep with. No matter your gender or age I hope, you really are hard to get into bed because you value your time, feelings, and health. I hope you respect others’ sexual decisions, and recognize rape as an occurrence that starts with the rapist. Because, by the time you are of age to consider all of this, I hope we are raising fewer jackasses.

I hope you work hard because someone taught you that it is the only way to achieve the many dreams that you have. And then, I hope you work hard because of the way it makes you feel, because it changes things. I hope you take responsibility for letting laziness get the best of you, because it will. I hope you value the people who push you to do better. I hope you compassionately help struggling workers to do their best. I hope you forgive yourself when you don’t do your best, so you can improve when you try again. Mostly, I hope you try again.

I hope you experience romantic love that makes you dizzy… for a while and cheerful for eternity. I hope that the “frogs” you kiss are decent humans, or that they at least make you see how decent you are. The chance of that happening is slim but it would save you a lot of pain. I hope you have a 50^th anniversary party. I hope the guest at the party will hear your sharp-tongued comments from across the room.

I hope you travel by plane, and by book.

I hope you break important rules.

I hope you take care of people, and your community.

I hope you believe that climate change is real and our environment is precious.

I hope you see art when you look at the tagging on building of the roughest street in the poorest city.

I hope you can deal with a lot of unfair breaks.

I hope you grow old, read this and laugh hysterically at how idealistic I was, and that you have led the kind of life that allows you to be an idealist, too.

(A video) On a cool Moment, Watch

2013-04-18T19:13:00.001-07:00

On Breathing A Little Bit Easier

2013-03-22T14:13:00.000-07:00

The following is a list of five things I can advise that you do not do because I have done or still do them, and they have made me crazy. I hope that my publishing this, will help somebody stress a tad less. If not, I guess it is a good reminder for me.

1. Don’t turn yourself into a chameleon because you know how. I am very guilty of catering to my audience when it comes to social situations. I don’t make the same jokes in front of all my different friends—I don’t necessarily appear to have the political or religious beliefs. I have previously patted myself on the back for this because I thought I had a high emotional IQ; now I realize it’s just insincere. Really it’s okay to be yourself. If you do not agree with somebody you can say so or elect to keep your mouth shut but you do not have to say anything to appease anybody, and they don’t have to like you.

2. Don’t play the devil’s advocate because you know how. In my family, arguing is communicating and forcing someone to prove their point is something we do lovingly. Not everybody was raised by wonderfully obnoxious clan or people like us. What we would call a healthy debate can hurt them. Unless you are really passionate about an issue (or someone is attacking you or a loved one personally), just relax. Ignorant people will not get too far anyway. In my opinion, being related to or close friends with someone makes this concept null and void, but that’s me. Many disagree with that caveat.

3. Don’t consider those who you feel the need to be passive aggressive with assets in your life. If you constantly feel the need to jab at a significant other or friend because of an issue about which you are uncomfortable confronting them, it is probably because they scare you. What kind of relationship is that? I would argue from experience, it is not worth much.

4. Acknowledge the things you do not accept. As a self-admitted people-pleaser, I have become extremely wrapped up in being “non-judgmental” and fearing people thinking I am judging them at all. Everybody has a moral code though, and so, everybody judges. I think it is important to tell people flat out that their behavior makes little sense to you, if they ask. Answering a question doesn't make you a bad person. If they don’t ask, don’t tell, but don’t beat yourself up for your opinion. It will help you breathe easier. Of course I do think that good people try their hardest to judge actions rather than individuals.

5. Trust your friends and family to know you are doing the best you can. If you let go a little and trust your loved ones to believe in you without explanation, they’ll do it, and you will have a lot less anxiety. You will probably irritate them less, too.

On Color

2013-02-16T10:21:00.000-08:00

I have seen snow on the ground as early as the first day in October and as late as the first day in May. In Michigan, winter never shows up when you think it will. I really wish I enjoyed the snow, longed for the cold, and prayed for Christmas songs to come the radio; it would be nice not to dread the better half a year, every year. The mixture of grey skies and white snow stays far too long for me. My muscles ache even more than yours do in the cold and I feel trapped inside. I hate that feeling. I consider myself an eternal optimist in the summertime, and I wish this attitude transferred easily to the winter, but it doesn't. I don’t feel good again until the first time I get stuck.

Sometimes “getting stuck” for me, literally means getting stuck—in the snow. Unfortunately, each winter dozens of snowy sidewalks in Kalamazoo, MI, where I attended college, go un-shoveled. This is probably annoying for the average person but for me, a girl in a wheelchair, it causes utter despair. After taking a ridiculous amount of time to get dressed, and re-training myself to ignore the aching pain in my legs, being instantly immobilized by a huge pile of barely frozen water can make me cry. The compassion strangers show me during these experiences renews my optimism. No matter how many times it happens, I am always surprised when someone stops walking to class or pulls their cars over to dig my incredibly heavy power-chair out of the snow. The majority of those who do even go as far as to follow me for a while, to make sure I do not end up stranded a block down the road. Some of my more cautious friends have warned me against telling these people too much, just in case they are actually mass murders or arsonists. In my mind, that thought process only perpetuates the gloominess of winter. I have listened to these kind folks complain about their families, helped them with homework, and even dispensed romantic advice once or twice. I am clueless as to whether or not any of that really made a difference, as they are, I suppose, clueless as to whether I make it to my destination safely. It is not the end result that matters, though. The simple fact that in the most inconvenient circumstances, and without grantee of a positive outcome, we extended a hand to each other brings color back into my world.

Before I moved to Kalamazoo to attend college, I got stuck in many different ways. The middle of every winter day in elementary school included the tremendous and horrendous task of putting on snow pants. The teacher would allow me to start dressing for recess five minutes before the other kids and they were still ready a good ten minutes before I was. For years, I was stuck inside alone (other than the teacher) until my snow pants were on. This made finding my friends on the playground very difficult and led to a lot of lonesome recesses. Then one day in Mrs. Laboon’s third grade class, a friend of mine, who was ready before all the others, used her extra time to assist me. Mrs. Laboon was told explicitly by my Occupational Therapist not to dress me, but after seeing me come back from playtime frowning so often, she must have decided to look the other way when my friend did. And just like that the blackness of being left out faded, and my eyes saw color.

Three years after that, on December 22, 1999 I had very extensive surgery on my legs. The lower half of my body was stuck in a spread-eagle position for ten weeks, the pain medication I was on made me indescribably sick. I couldn’t bathe independently, had to use a bed-pan to go to the bathroom and barely ate. By the time my parents decided to stop giving me the pain pills, I was eleven years old and weighed thirty pounds. Being without them was agonizing also. Each tiny muscle in my legs felt like it was individually lit on fire. Compassion seemed to pop up everywhere though. Almost everyone I knew or had even had a conversation with, sent gifts or came to visit. Friends and family spent hours of their own time comforting my parents and me and spent their own money trying to make my day better. The most shocking and wonderful burst of color came from my sister.

My sister and I were pals as toddlers, but during the early years of my adolescence, we pretended, very convincingly to despise one another. She teased me about anything and everything I did or said, called me spoiled and lazy and we often physically fought. During the time I was recovering from the operation, she complained that I was getting all the attention, but she never left my side. She slept, ate and did her schoolwork, sitting at my bedside. It was the first winter during which she did not play in the snow she loved so much. It was then that I realized she didn’t just love me because she had to; she sort of liked me, too.

Winter will always be a season of difficulty for me but it is in times of hardship that we see the best in our family, friends, and in strangers. I know that sounds cliché, but when I’m stuck it is a beautiful truth, a truth full of color.

(A video) On Depending on and Helping Others

2013-02-12T14:20:00.001-08:00

On Equalizers

2013-02-08T20:11:00.000-08:00

This first paragraph deals with disability because I can fully develop this example. My apologies if my transition to the actual point of this post is careless.

Occasionally, People with disabilities have thought processes that read like this:

I'm sick of looking different, and sick of feeling different. I'm sick of making jokes about the parts of my life that can be indescribably bizarre. I wish I didn't have to be so open with people about the flaws that I forced to wear on my sleeve. I wish one able-bodied person would say to me "I wish things weren't so hard for you." I'm sick of fatigue and knee-pain and weakness. I'm sick of feeling defensive every time someone tilts their head when they talk to me, and even more sick of people tilting their head out of misguided sympathy. I'm sick of feeling like I have to prove to people that I'm not stupid and I'm even more sick of feeling like it might be a waste; maybe I am what they think I am.

Then one speaks to a friend, a coworker, or a significant other and realizes that while every experience is unique, no emotion is. Everyone who has lived with a disability,hidden their sexuality, dealt with a broken heart, or the unbelievable pain of losing a loved one too soon, lost their life savings or never had a dime to their name; everyone who has been stigmatized for their mental illness, or prayed for a tumor to be benign or hoped for a spouse to wake up,has suffered. We have not all felt lonely, frightened and inadequate for the same reason, but we have all undoubtedly felt lonely, frightened, and inadequate.These feelings are often the cause everything bad: addiction, thievery,selfishness, adultery, hatred, and even death. Unfortunately, emotions (particularly negative ones) are the only real equalizer in this imbalanced world.I think this might mean that the only way to overcome our pain and feel joy is to help others feel fulfilled in their lives.These aforementioned "equalizing emotions" have forced us all to play on the same team. Nobody wins if somebody feels like they're losing. The only way we can ensure that less of us commit crimes, struggle with addiction or hurt those by whom we are surrounded is to admit and embrace the truth. We are an us. We all have a vested interest in making sure our fellow men and women are happy. In fact, if we want our children to grow up a better place than we did, we have a duty to do everything we can to assist them in becoming so.

Hear Me Tell You to Stop

2013-01-29T19:09:00.000-08:00

On What I've Learned From Those Who've Left

2013-01-22T14:02:00.002-08:00

On January 13th, my family and I lost our matriarch. We're lucky in that my Grandma was 86, and lived most of those many years in great spirits. We are also lucky that people came from ten different states to bid her goodbye and show us support. It doesn't surprise me that so many people wanted to pay her homage. I was fortunate enough to know her well. She was as loyal as they come, a willing listener, a dispenser of brutally honest,and heartfelt advice, the life of MANY parties, and a rock for her husband, children and grandchildren. She was my sister and my last grandparent; we'll miss her and think of her more than daily.

The romantic in me wants to believe that she and my Grandpa are in a paradise just above us, drinking martinis,laughing, kissing, and maybe occasionally exchanging a word or two with our other friends and relatives who have previously passed away. The realist in me says, this might be it. Maybe my aunt, my uncle, my mom's infant brother and sister, my grandma, her friends, my grandpa, his friends, maybe they're gone. The writer in me takes comfort in the fact, that as long as I am telling stories, they'll be in the minds whoever chooses to read my self-involved nostalgia. If they are gone though,that means,we have one chance to be the kind of character other people want to cast as the good guys in their prose.I'm 24, and I really don't have any right to tell others how to live, but I know the things that make my deceased friends and family the protagonists in my mind, and it's my blog so I'll be sharing those.

My Grandma appreciated a well crafted joke, and made everybody believe they were interesting.
She took pride her appearance, both physically and socially. She was always well put together and kept private what needed to be kept private.
My Grandpa never failed to look on the bright-side, and saw fun around every corner.
They were both fierce friends, and never put up with anybody speaking ill of those dear to them (even if they spoke ill of them sometimes).
My Dad's brother Johnny, never spoke ill of anybody.
My dad's sister Eileen, didn't give much thought to what others might say about her, which is what made her so hilarious.
None of them ever missed a chance to toast to something magnificent.

I could go on and on about what I've learned from these, and other people who are no longer with us, but it all boils down to three things. Be good. Ensure that you have a better time than you think possible, and be you. There's a unfortunate and large possibility this is your only shot.

On Being an Ally

2013-01-06T19:33:00.002-08:00

I am a proud member of three online communities concerning disability. It is beyond helpful to connect with people with experiences and challenges similar to my own. A few days ago, I read post that bothered me. A couple of the members wanted to create a poster about how to be a good ally to your disabled friends and/or family members.

I guess one could make a case that this is a good idea, because there are many people who get nervous when they have to interact with those of us with disabilities, and it is usually due to the fact that they have never done it before. That being said, it annoys me for two reasons. The first being because this poster was not directed the general "naive" public but at individuals who they already consider to be an important part of their lives. It has occurred to me that maybe I am super fortunate in having family and friends who [seem as though they] are totally comfortable being with me in public. However, it has also occurred to me that the people who started this thread have non-friends and ridiculous relatives who mistreat them and that is obviously upsetting. I have just learned to be a valuable asset in someone else's life, and have nothing to deserve better friends or more accepting family than anybody else. Life is horrifically unfair.

The second source of my irritation came from the fact that a poster like the one they were planning on creating, could cause people to think all of us with disabilities want all the same things in an “ally”. For example, one of the instructions they give is: Don’t help unless you are asked. I am comfortable asking three of my many wonderful friends and acquaintances for physical help, and one of them has a disability, too. The rest of them just have to infer that I am struggling and ALWAYS help without being asked as they know I’m too stubborn to tell them I need them. Another one is: Ask permission before touching my body and/or my wheelchair/crutches/walker/cane. I really could not care less, if someone moved my walker. I would much rather them do that than bump into it; I am extremely anxious about inconveniencing strangers. I do think it is a good idea to ask permission before touching another’s body, disabled or not. This doesn't mean that the aforementioned guidelines are bad, but they would not work for me. No two relationships are identical, and no two people are the same, even if they have a disability in common,

So to be a good Ally a disabled person in your life:

1. Get to them. Think about what they like and dislike how they treat you, etc…

2. Go from there

You could probably use these rules for any friend you encounter.

On My First New Year's Resolution

2012-12-28T19:42:00.001-08:00

On Beauty in Foxholes

2012-12-17T20:23:00.000-08:00

A few weeks ago, I was asked how my disabilities affect my spiritual life. I have had trouble since then coming up with enough literary meat for a post. However, because of the horror in Newtown, I think a lot of us who do not consider ourselves prayerful people have looked up and asked “why?” My grandpa commonly repeated the old cliche,“There is no atheist in a foxhole.” It has never rung more true to me than in the last couple of days. Our nation has been forced, once again, by a deranged young man into a proverbial foxhole and we’re all praying together that something will make this violent trend stop.

I think many people in the country will see the capability to end this violence in God. Some will see promise in Buddha, some in Jesus and some in Mohammad. Goodness should be looked for wherever people can find it; I am glad religion is helpful. Without it, the world would probably slump into a permanent state of unwavering depression.

I do not want to offend anyone but my disability has in my opinion, made organized religion, almost unnecessary for me. I know that there are more good forces than bad forces in this world. I have spent countless moments in my life helpless. The number of people who have gone out of their way to help me and improve my day is immensely greater than the number of creeps who have attempted to use my condition to their advantage. There were dozens of heroes in Newtown on Friday, protecting those innocent babies, and one sick bastard with a weapon. That ratio does not surprise me because I have seen it my entire life. For every annoyed onlooker who rolls their eyes while I struggle up the stairs, there are five who want to carry me. For every person has bullied me, there has been someone who couldn’t fathom their motivation. Human kind is largely kind. When humans are evil, I pray. I pray not because of any specific credence but because I want to be able to see the joy in the world soon. When I send those prayers, it usually doesn’t take to long for me to get a text from a friend, or see a neighbor assisting another neighbor. Evil is the rarity, and good is the rule. Where was whatever being I pray to on Friday? It certainly not in Connecticut, but I believe that because most of us are loving and loveable, we can overcome this and we can see beauty again. That faith in human beauty, I hold onto like some hold onto the existence of God.

(A video) On Inspiring

2012-12-16T09:28:00.001-08:00

On the Shooting in Connecticut

2012-12-15T17:46:00.001-08:00

President Obama spoke very eloquently about the disgusting,senseless,horrific crime that took place in Newtown,CT yesterday, which ended the lives of twenty precious children and eight good adults.He said "These neighborhoods are our neighborhoods and these children are our children." We have make sure this cannot happen again. Twenty kids will never know what it means to have a best friend; they'll never know what it means fall in love. Forty parents won't get to see their babies go to school dances or graduate from college;they'll never kiss them good night again. As Americans we have to be willing to abide by any law that may spare people that inconceivable pain. We have to talk about mental-illness out loud and deal with its effects without shame.I have great admiration for the school teachers who protected and comforted their beloved students, and for the emergency response professionals who cared for people at this terrible scene. My heart is with our kin in Newtown. Hopefully, this is as bad as it gets. Hug your loved ones a little tighter this holiday.

On The Dangers of Mistrust of Authority

2012-12-11T09:10:00.002-08:00

If one were to observe charts and graphs about Guatemala’s economy, without visiting the nation or surveying its people, they could be convinced that Libertarians are absolutely right. Each year from 1960 to 2006 Guatemala lowered tax-rates, unemployment was below three percent and their government is was not indebted to even one other country. What that observer cannot learn from charts and graphs though, is that those employed people were uneducated, underpaid, starving, and often without clean water. The saddest part is, the citizens of Guatemala had the opportunity change their circumstances, and chose not to do so. They are terrified of giving any of their personal revenue to the government.

In 1999, the Consulta Popular bill (C.P.), which would give indigenous (namely, Mayan) Guatemalans equal social and political rights, was voted down almost as quickly as the tax reforms, which would allow the government to provide citizens with clean water and decent roads, were three years earlier. As a result, Guatemala has the lowest tax rates of any established democracy and those who are in charge today struggle to provide people with their most basic rights. (Blake, 2008)

The aforementioned CP was not just rejected by European Guatemalans, but by the Mayans themselves. Most readers will find this counter-intuitive but neither group has any trust in authority. The European Guatemalans were afraid of loss of power, and the Mayans were insulted by the proposal. Though it guaranteed them the right to vote, and buy or own property, it did nothing to stop the discrimination that occurred in the private-sector, or in schools and did not impose a law that would force businesses to pay all employees equally, regardless of race. The Mayans had fought too fiercely to accept less than they deserved. (Carey, 2004)

Though it has long been run democratically, for years the Guatemalan government was simply too big. Not only was it controlling but there were also only one group with any power. The CACIF was a political party similar to the communist party, but was led by the owners of two corporations, who catered to their own. Like many corrupt governments, they owed their power to the wealthy elite, and so, like many corrupt governments, they ignored the poor. A result, in 1944, the "October Revolutionaries", and their leader, Juan Arbez staged a coup, and overthrew the oligarchy, or organizationally-run government. They established liberal economic policies, which benefited and greatly strengthened the civil and labor rights of the urban working class and the peasants. This movement seems like an occurrence the United States would celebrate. During the 1950’s, however the US was right in the middle of what is now referred to as The Red Scare and anything that resembled communism was thought to be evil. The U.S. government ordered Central Intelligence to stop what they called, Guatemala’s “communist revolt", and placed unbelievably strict sanctions on Guatemala, and even stopped funding American fruit companies that were growing their products in Guatemala. The United States’ extreme action was a major component in Guatemalans mistrust of their leaders because it led to a wider division between the underprivileged Mayans, and wealthy citizens of a European decent. Unlike in many minorities in other countries, the Mayans, who are very obviously discriminated, against were and are almost forty-seven percent of the population. The majority of this group was sick and tired of being ignored. They staged uprising that led to a bloody civil-war that lasted thirty-six years, from 1960-1996.

As was stated earlier, the year the war ended a tax reform, which would only raise taxes by four and a half percent, was proposed and voted down. Because there were no checks and balances in place, all Guatemalans were fearful of returning to the oligarchy that was in place before 1944, and refused to give the government the chance to do so. Why did the elite fear the kind of government that had made their lives so easy? They had seen what is possible when running one’s own business, and wanted that ability.

Fortunately, in 2003, a PAN candidate, Oscar Berger was elected. Berger is a moderate, who was able to win the support of European Guatemalans by promising to enforce a US-like market reform, and won the Mayan vote by promising a stronger equal rights bill. In 2006, that bill was passed, and so were the exact tax reforms proposed at the end of the Civil War in 1996.

Berger’s willingness to pass these bills and the citizens’ willingness to trust him are certainly a turn for the better. Enforcing these laws however, has proven to be very difficult. No equivalent the Internal Revenue Service exists in Guatemala and tax evasion has become a major problem. Racism still is rampant, and deep. European Guatemalans make excuses not hire Mayans, despite the fact that the discrimination is technically illegal. Both issues, according to outside economist and sociologists, are predicted to be issues for a long time.

It appears that European Guatemalans are currently in a situation similar the one that the Caucasian Americans were during the Civil-Rights, and Women’s Liberation movements of the 1960s. They may not like the government is asking them to open their minds, and are attempting to find ways to keep them closed. The U.S. has not come far enough since the sixties, but we have made remarkable progress. Every generation has become more and more tolerant, and the laws put in place to protect African-Americans and women were certainly a huge part of that. I believe the same can and will happen for Mayans in Guatemalan. That is why I agree with the statement, “the evolution of tax policy and indigenous rights show that, slowly but surely, democracy is improving the lives of all Guatemalans.”

Works Cited

Blake, C. (2008). Politics of latin america. (2nd ed., pp. 298-318). New York, New York: Houghton Mifflin.

Carey, D. (2004). The struggle continues: Consciousness, social movement, and class action,. Latin american Prospective. , 31(6), 69-95. Retrieved from http://www.jstor.org/stable/4141608

On People to Whom You should Pay Attention

2012-12-06T17:15:00.003-08:00

disabilityandIdo.blogspot.com

On Shame

2012-12-04T07:58:00.001-08:00

I do not recall the last day I woke slowly. Lately, I jerk awake embarrassed by something I said the previous day, or even weeks ago. I have almost always lived in fear of disappointing, boring, hurting or offending others. This is difficult for me. I am a very opinionated person, and my sense of humor does, at times, have a sharp edge. My loved ones know that about me, and accept it. I, however, struggle daily to accept it about myself. I have had full-fledged panic-attacks over jokes or comments I made. I have done a lot of apologizing, a lot of lying, and I have even broken my bank, terrified that people will get sick of me and simply exit my life. I have spent many years denying that this had anything to with my physical challenges. I thought that this was a totally unrelated disability which I just happened to be unlucky enough to be born with as well. That is fallacious. The truth is, there is a constant tape playing in my head telling me that my friends and family are doing favors for me by dealing with every issue my disability presents. Because I believe that I am indebted to them in some way, I also believe that I have no right to express myself in ways they may dislike. The scarier aspect is that for a long time, I believed that who were ashamed to be seen with me, or irritated by my slow movement, had good reason for the feelings. That I wasn't allowed to be hurt by their bigotry, because it was natural… Who would not be humiliated by me? I was. In the last year, I have made great efforts to learn to ignore the aforementioned psychological tape. My life has improved drastically. There are days, weeks, and months, though in which I constantly have to make the choice to rise above those thoughts.

I am blogging about this because I assume I am not the only person with this problem. I want people to know that no matter how hard you work to silence that lying little bastard in the dark corner of your mind, sometimes, you are going to wake up to his irreverent screaming. This is not a permit to engage in the behavior that you did back when he controlled your life. It is not a pass to act self-destructive, or ashamed. The dear people who proved him wrong over and over again by sticking with us deserve better than that. I’m better than that. You’re better than that.

A video answering a readers Questions about CP

2012-11-25T21:33:00.003-08:00

On That for which I Am Thankful

2012-11-25T10:50:00.000-08:00

November has been a wonderful, dramatic, funny, tumultuous, month. This year has been the same. I thought it would be nice to make a list of the things for which I am thankful, beginning with the readers of this blog. Thank you, sincerely, for taking interest in my writing. This is the biggest compliment you could pay me!

The list continues, only the first two are in any particular order as they are paramount. I am thankful:
1. For my mother, who has the uncanny ability to make everyone who enters her home feel special and who makes me feel important to her, every day. My father, whose sense of humor is unparalleled. My sister, whose drive and dignity is something we all should emulate, and my extended family and family-friends, who are more than generous, more than hilarious and more than loyal.

2. For my friends who forgave me, fought for me, and fretted with me during all the frightening times this year. For the same friends who hugged, highfived and hollered with me when good things happened.

3. For my country, and our ability to elect the leader we feel are right for the job. The fact that 2012 included a close presidential-election and nobody rioted in the streets. The fact that the majority of Americans have decided that people who make degrading comments about racial minorities, women and the underprivileged, should not have a seat in DC, and the fact they have also decided that the fact that I was born with and acquired disabilities should have no bearing on whether or not I am able to see a doctor.

4. For the courageous people who risk their lives to defend the country I just wrote about.

5. For my education, and my ability to become educated.

6. For My health. However fleeting it may be, it could be worse, and I am so grateful for every breathe. I am even more grateful for all the breathes my loved ones take.

7. That I found the strength to forgive myself, which is a decision I have to make daily. Beating up on yourself becomes vane, and difficult for your loved ones to handle. It feels uncontrollable, but is really selfish.

8. For all the laughs, kisses, gaffs, and gifts, that have already occurred and will occur in the remainder of this life-changing year.

9. For Peace, LOVE, and ice-cream.

On The Magic of Writing.

2012-11-08T20:47:00.000-08:00

I have been a horrific writer lately. I’m feeling ditz-like and distracted. Everything I attempt to write is choppy and lackluster. The cage of writer’s block is a terrible place for someone like me to be. Writing has long been my easiest form of communication. Ain’t nothing to do it but to do it, though. Here I go!
See…. I could not even think of a less cliche metaphor than cage? So much failure.
My personal troubles aside, it’s National Novel Writing Month. In November, thousands (millions?) of writers attempt to compose their own novels in 30 days. Using the hyperlink I just posted, authors are able to log in, clock their progress and encourage one another, as well read one another’s rough drafts. I have participated thrice and finished a rough draft once. Whether or not one finishes, in my view, is irrelevant. Setting this forces a person to write something other than Facebook posts ,tweets and blog updates. This is great, especially if you fancy yourself a writer of fiction. The reason I wanted to discuss National Novel Writer Month is this. There is a “Young Writers” section. Kids can partake, too! I urge parents to raise dreamers; by extension I urge them to raise writers. Imagining different worlds or beautiful events that could occur in this world, has gotten me through so many tough times. Dreaming about beauty and recording those dreams makes you believe in beauty. When your life is feels so ugly there is no beauty to be seen, writing down those feelings releases the author. Documenting pain helps one to feel like it’s acknowledged. After that, the beauty reappears They can dream again. Only good can come from having more people who see beauty even in ugliness.

On My Thoughts & Prayers (a video, watch it)

2012-11-03T16:05:00.001-07:00

And now you're all glad you don't have curly hair.

On Ableism, A Term That is New to Me.

2012-10-24T07:56:00.001-07:00

I want to blog about “ableism” because it is a term with which I have just recently become familiar, but a phenomenon that greatly affects the disabled community of which I am obviously a member. As a disclaimer, I will remind my readers that I speak for myself. If you think my thoughts are stupid, please, feel free to let me know by clicking here, but do not paint all disabled people with my brush. If they knew enough about me, they might dislike the color.

Anyway, like a good student I will begin by defining ableism for you, or rather I will copy paste a couple definitions here. Hey, this isn't a real assignment.

Wikipedia says:

the assumptions underlying the medical model of disability amongst many clinicians, the "ableist" societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people. A disability is thus, inherently, a "bad" thing that must be overcome. The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity

Merriam Webster says:

Discrimination or prejudice against individuals with disabilities

I suppose I had not heard of the term before the year or so because, previously I had just called it asinine.

In any case, if a partially-skilled writer combined these two definitions they could say:

Ableism is the misguided attitude that people with disabilities must either attempt to be exactly like those without disabilities or stay away from them, which leads to discrimination against the disabled. …Right? I tried!

Notice, in my explanation, I did not comment on whether or not my disability was a mistake. It is pretty apparent to me that it was. A medical professional fucked up...No doctor ever wants to deprive a newborn of oxygen. That’s an error, plain and simple. This doesn't mean it wasn’t what people call a happy accident, but I do not think I am turning on my fellow disabled people by admitting that I do not subscribe to the idea that near death experiences are meant to be.

I’ll also admit to having ableist history. I have spent most of my almost 24 years of life striving to do everything able-bodied women do. I have run out of breathe trying to keep up with able-bodied friends and family. I wanted to accomplish those things, I had to work hard. I can be pretty sluggish and without my CP I’m sure I would have been lazier. One could make a case (as I do) that striving to be like everyone else did me some good. That is, in my mind, one of the many reasons I consider my disability a happy accident.

Where I think ableism does become a problem is that makes those of us who live with disabilities ashamed. Phrases like “My son has Autism, but you can hardly tell,” and “Cathleen has CP, but she’s totally normal,” put into our heads that a condition that we can do absolutely nothing to change, is something we should hide. Struggling to camouflage the atypical parts of oneself every day certainly does psychological damage… It certainly makes it more difficult to believe you are capable of achievement. Therefore, what society dreads, they create. Many people with disabilities are too embarrassed to put themselves out there. Beyond that though, it lies to us. The traits that disabilities bring people are not shameful, they are unique…. And in a world where everybody is attempting to set themselves apart from the crowd that is a wonderful thing! Perhaps, the others are jealous?