One persons Courage…

You hear about it in the news, inspirational articles, and in the whispers of people discussing someone’s life. Sometimes you hear it to your face. “You are so courageous.” I have been facing my fears lately and there has been some courage yet, most of what people tell me is courage is merely a will to live. Is the Will to Live what makes us couragous? Does this invalidate courage?

When I hear about someone being courageous, brave, or something along that line the picture in my mind is a bit gender normative and sexist. It’s a brave soldier in a black and white movie with bombs exploding behind him rescuing the little woman and running away from gunfire without breaking a sweat. I am well aware this is a very skewed image that remains in my mind. I use this image to invalidate my own experience often.

How can I be courageous? I just didn’t give up. I didn’t notice it until tonight. Giving the speech about my Thirty Seconds, I was reminded it is courageous to save a life. I found myself afraid of those words. Why fear courage? I think it is the responsibility to be something more than human that the media shows us courage is. Batman is couragous. He’s a super hero. I am just a small and broken woman at the end of her endurance trying to make it through every day.

I am trying to teach myself what courage can be, beyond the black and white John Wayne dreams. I am trying to teach myself that courage is simply living. Transgendered people who have the courage to go through the change, to live in the sex that fits their minds and not their bodies are courageous because it is their will to live. They can die for being who they are.

How terrifying it must be to have to pee in public. How terrifying it must be to go clothes shopping, to go out and feel that fear… what if someone figures out who they are and in their ridiculous hatred they attack? That is courage. It is also horribly sad that we live in a world where it is not a hate crime to attack a trans individual. I didn’t know that until recently, I thought that it was a hate crime. It should be. Living without a legal saftey net, living without basic human respect, and living without the ability to be accepted by any other minority (except for some of us who actually do care) takes courage. There are trans persons who are unable to live as they wish, because it is too dangerous.

It takes courage to live at all. It takes courage for the college student to go to her late night class, because she hears all the warnings about rape. It takes courage for the woman who was date raped to speak up, risking victim blaming and slut shaming. It takes courage for the teen mother to take pride in being a mother, bucking against the stereotypes about teen mothers. It takes courage for the disabled man to go up a flight of stairs on his hands and knees to see if his able bodied friends and family are alright after hearing a gunshot. He couldn’t escape if there was a killer. That is courage.

To revile the word courage is to revile the act of living. It takes courage for our students to go to school. We live in a world where the terror of school shootings is very real, where the hate that a disabled student feels can destroy their minds and their souls. We live in a world where there is no safe haven. It takes courage to raise a child with disabilities and to love them. It takes courage to admit that you are disabled.

It takes courage to say that you do not want to see a movie because it is full of sexism. It takes courage to be a Womanist. It takes courage to be a Feminist. It takes courage to be an advocate. It takes courage to write. It takes courage to cry. It takes courage to go out, knowing discrimination is waiting for you. It takes courage to date a person who is of another color. It takes courage to love someone who is of the same sex.

In a world as full of toxic messages, it is cowardly to defame courage. To hold the power to inspire one person is enough to change the world. To inspire countless thousands? That is a gift unparalleled. Forgive me for feeling that I was unworthy of the word courage.

I have been courageous. I am courageous to write about my time as a Victim. I am courageous to have ideas and to share them. I am courageous to start a business during a Depression.

You are courageous too. I am sure you can list ways you are courageous. I would like the comments on this post to be dedicated to your courage. What have you done that is courageous today?

Today my act of courage is to start planning the wedding ceremony for two young women in love. My acts of courage in life will include officiating their wedding ceremony. I do this with pride, and to honor their love and the courage it takes to stand up and proudly say, “I am Gay, I am Pagan, and I am in Love!”

Thank you for your life. Thank you for your courage.

30 Seconds

Tick, tick, tick. That is the sound of the watch counting down on your life. A disaster is about to hit. You are going to have to choose between living or dying. Tick, tick, tick. You have thirty seconds.

Thirty seconds seems so short when you look at the length of the average human life. People live past 100 years of age sometimes. To them thirty seconds might just be the blink of an eye. Thirty seconds can also feel like an eternity. For me, life has changed in thirty second bursts. I am given two choices and neither is pleasant.

Tick, tick, tick, The choice between life or three deaths came. I broke my back in a car accident. I could have made a choice to not risk my back, but the choice was between my life with health intact or at least my life intact or dying along with two children. Tick tick tick. The clock slowed down. It felt like an eternity. I know it was sudden. The impact that jarred us forward, sending our bodies into a free fall. The chair that should have kept us from flying free loose, wobbling and stripping up. the bolts connecting it to the van coming free. The cries of fear were drawn out. I had time to shift down, bracing for the impact.

The thirty seconds ran out and I felt as if I had died. The van seat pressed into me. I pressed back. I felt crunching inside of me. My hips popped out of their sockets and then everything went too quickly. I couldn’t think clearly through the pain to advocate for my needs. I just knew I was hurt. The boys were fine. The basketball pole we had hit was up inside of the van, the driver was afraid and sped away. No one else was injured.

This was the first time that the clock stopped like this and I managed to make a difference. Many times in my life the clock slowed, I had more than thirty seconds to feel a fall, or to choose. Tick, tick, tick. It was just thirty seconds but two brilliant young men are able to change the world. They will never know what I sacrificed. There was no ambulence, I had to try and get to the ER alone. My legs refused to move. I made them. I made it to the bus stop and waited. The clock was ticking, but now it was silent. It was seducing me, allowing me to be lulled into the dazed sensations of pain. It took me an entire day to make it to the Emergency Room.

The clock slowed again, I waited for two more days to be treated. I was forbidden to eat or drink, because surely the doctors would want to treat me and if I ate or drank I would die if I needed surgery. I had no money for food anyway. I just sat, watching the click on the wall. The minute hand creeping forward slowly. They missed the broken bones in my back. I was told nothing was wrong and to go on with my life. No pain medicine, just the assurance that in a few days I would be right as rain.

It was a flood. I waited a few days then went to the dance troupe I was a member of. I looked forward to moving, because I hurt so much. Movement would stretch my muscles and I would feel better. I raised my hands up and started to move with the others to the music. The clock slowed again. My legs went away and I collapsed. The pain grew, my head burned with it and I drifted into a daze. They wanted to call an ambulence. I refused it. The doctors had told me I was fine. I had to deal with this alone. I hadn’t learned to fire them yet. I had not learned what it meant when time slowed down and the second hand sounded like thunder. I made the wrong choice this time. My spine could’ve been saved. I should have gone to the ER, to see if they could find out why i was still in pain.

Time sped up, too fast this time. I lost my job as a dancer. Months passed in a single tick of the clock. They did not want me to go but I was weaker and weaker. My job as a teacher was lost. My job as a retail worker faded out too. I was facing homelessness. I couldn’t make a good impression at the job interviews. I kept getting sick from pain and fainting. No one hired me. My savings drained out. A flood of green flowing away. Tick. Tick. Tick.

My shelter was gone. I had to choose. I could live with my grandmother, if I ate food that would make me sick. She didn’t understand allergies enough to care. I could obey her every whim. I could live with a woman who had no love for anyone. I could be on the street in December with snow on the ground. I went to live with my grandmother. That was worse than snow. Grandma doesn’t like people. She likes to control them. Grandma is like my father without a penis to rape me with.

It lasted until Spring. Then she locked me out for seeking peace. She locked me out again when I went to a bar. I wanted to be away from her. I danced with someone. I drank a soda. I came back to where I should be sleeping to torrents of abuse, accusations of theft, being forbidden to continue to work at a video store. I was devalued. The clock kept ticking, and my spirit faded out further. Tick. Tick. Tick. I wished I had died.

I chose to go back to the city, to the streets. I chose wrong again. There was no right choice. That first night I laid on the cold floor, shivering and trying to sleep. My pain saved me. My paranoia saved me. I had taken a fork from dinner to bed with me. They count the knives at that shelter. The men and women all sleep on the floor. No matter if you are disabled, no matter if you are all alone. You are sheep together for the slaughter of someone else’s profit at your homelessness. I thought it was a nightmare at first, when I felt hands on me. I opened my eyes. I remember noting he had no teeth. The fork I had stolen was in my hand. I stabbed him in the chest with it. I pierced his flesh, I was quiet. He wasn’t. He scurried away, screaming and trying to escape me. I kicked hard. My legs held for a moment. Long enough to bruise his testicles. He had wanted to rape me. I laid back and listened to him explain his screams. He’d rolled onto the fork, he said, during a nightmare.

I couldn’t move in the morning. My legs wouldn’t move. Two men hefted me up and set me at a table. They gave me knowing looks. They brought me food for two days, but, then I had to try finding a job again. I walked the city. My feet started to swell, my clothing too. All of the toxic food was making my body gain weight. My stumbling had me often called a drunk. I hid in the library. It was April. Easter was coming. Two days before Easter it snowed. I waited in the city, no one allowed to use the shelter in the day. Not even the blind and broken woman who could barely handle the chill. We stood for eight hours in the snow. I gave up my spot in the warmth to a woman and her two children.

I heard the ticking clock again. It was so hard to move. A married couple carried me into the bus. The driver had wanted to leave us out to die. Many would die anyway. I almost did. He didn’t want to lose his job. It took more than thirty seconds to get me on the bus. It felt like an eternity. When in the light of the shelter, someone screamed. My face was black. Not the black that the persons of color might be, not a gleaming and rich ebony. The blackness of dead tissue. My entire body was black. No ambulence. The bus driver had to drive me out. The same married couple came to make sure I would be alright.

The doctor was afraid. My Blood pressure was 66/80. I should have been dead or in a coma. I made bad jokes. I laughed to stay alive. I hurt. The pain in my back was worse. I could feel my legs, my face. The tingle of damaged nerves. All they could do was thaw me out, send me back. I had no shoes now. I could not walk. I went to another shelter. My anger was too potent for them. I refused to die. The other shelter had a time limit. I had until the Fourth of July to get a job and move out. I went back to teaching music, another community center.

My pain was bad, growing worse. It was a mile to the center from the nearest bus stop. A mile because no driver would enter the “War Zone.” Gangs. Drugs. Pain. I ignored my needs. I lasted two months. I walked out after my boss refused to tell a client he could not shove his gun in my face. I yelled at him for it, turned out he lead the gang. He didn’t kill me. He was too shocked that the little white woman would tell him off. I was trapped by that act with two abusers.

Years passed. I could do less and less. The clock kept winding down. It stopped. Finally the diagnosis came. “When did you break your back?” That thirty seconds lasted for two years. I could barel walk. My pride at being able to walk left me to push myself. The doctor wanted me on antidepressants. I rejected that idea. Without them I could not have pain meds, she said. I did not want pain medicine. I kept telling myself the pain meant I was alive. I wasn’t living. I was just flesh in space. I couldn’t figure out how to wind the clock.

Two years turned into four. I finally gave in and started accepting that pain needed to be deadened. I accepted it would never go away. Four years turned into six. I began to fight for my freedom. I fought for a wheelchair, for the use of a service animal and I fought for my person. Six years turned into Eight. Today is the anniversary of my nearly freezing to death almost eight years ago. This is close to the speech I am giving later.

I am only twenty four. The damage to my body over my life time has come in bursts that lasted just thirty seconds. Each one has taken me years to even begin to treat and that is just unacceptable. In thirty seconds you can run a Super Bowl Commercial. In Thirty Seconds you can make a difference. If I took back all of those thirty second bursts. I could have another life time. I wouldn’t change my choice on that fateful day, when I had to choose Disability or Death. I just wish I had known that in thirty seconds I would join a minority. Being unaware of disabiling conditions I already had, I wasn’t an actual member yet.

It only takes Thirty Seconds to become disabled. Don’t forget that. Thirty seconds can cost you everything you think you hold dear. Thirty seconds can be the difference between dancing in a movie or dying on the streets. Just thirty seconds.

Reality of Choice

It is unfair that we must bear a responsibility to take up slack for people who want life spoon fed to them. It is wrong that we must be better advocates than anyone else around us. It is wrong that we must fight for our basic human rights constantly. No one chooses to be disabled but here we are, fighting anyway. I am tired of wearing the Super Cripple label. I am tired.

Today I was reminded that it is important to be human. I didn’t know I had been working on being Super Perfect again. I do this without thinking. It comes from the need to survive. Growing up without a diagnosis for any of my differences including Autism left me with a need to be extra normal. I used to fail on purpose so that no one would hate me for being smart. They hated me for being me anyway.

I have spent my life trying to blend in with the able bodied and normal. I have never quite managed. Even when I am trying to seem normal, passing as if the only disability I have is my spine, something other shines through. Maybe it is the way I wince at something no one else can hear. Maybe it is the way that I curl my hands up and hold them at my sides. I try to not. Maybe it is the way I look at people, without looking at them. I haven’t made real eye contact in years. No one notices… or do they?

The first paragraph came from my responding to a post on another blog, the blog that forced me to begin writing. It is a post that commiserates with the service animal users, and offers support. Every day every disabled person has to advocate. People tell me often to not get angry. I am tired of not being allowed to have a real emotion because it might upset the normies. I really want to cuss right now. I want to let those words fly out because that’s what the normies would do. They use weird language, from my vantage point. Awkward tones, words that can make less sense because to them the idea of making sense to someone else is ridiculous. The idea that someone could be prejudiced because you do not use a word improperly is foreign.

Today was a good day, if exhausting. I woke up to illegal action by my apartment. The apartment is supposed to give a twenty four hour warning before entering my home. We had three. We also had to avoid being here due to the risks of exposure to allergens and their pesticide use. William spent the entire day in a carrier, just as panicked as I felt at the squeal of brakes, the cacophony of traffic. Sprite was her usual self, thoguh she panicked a few times too. My head still hurts from being next to a bus that had squeaky breaks. I can still hear it, over the TV, over the silence if I turn it off. There is no choice for me there. I cannot escape the overwhelming sounds. I cannot escape the pressure in my head.

I cannot escape the texture of my blanket. Tonight it feels like sand paper. Yesterday it was the softest cloud. The reality is, others have it worse than I do. Others cannot coherently string words together to express themselves. Lately I have been wondering how much “real” autistics suffer. I have been wondering if any other autistic person feels as normal as I do. I don’t feel like I am anything but normal. Anyone else knowing me might not think so but that is due to work.

The reality is I spend every day choosing between fighting for my civil rights or acting normal. I can’t do both. If I act the way that the dominate, able bodied men want I give up my rights. If I do not fight for my rights I will starve. Today I found out that Section 8 is no longer taking applications. This means thousands of people are going to be homeless. They are trying to close the program. Don’t we need more help with housing not less? I am tired of living in fear. As a minority, the disabled face their funding being cut. Do we have a choice? Yes. Is it a good choice? No.

What is the reality of choice? The reality of choice is simply that there is no choice. If you are disabled and able to push for legal accommodation it is a duty. You might not like that idea, but, think about it. Every time someone oppresses you, they oppress a dozen others. Every time you fight back and calmly advocate for your rights there is a benefit, there is a decrease in the oppression of others.

I do not know any disabled person who is unaware of their oppression. Those who face the fear of institutionalization. Those who have the memories of it. Those who try to ride a bus. Those who try to buy groceries. Those who wrok. Those who want to work but are not able to train for the job due to discrimination. All levels of intellect and worldly awareness. We all know we are being oppressed. We might not know the words for it, but the feelings are there. We all feel the changes when someone becomes educated as well. We all benefit from even one moment of advocacy.

I often hear parents disparaging their disabled children with in earshot. Sometimes they do not bother to try and hide their loathing. They all want a cure. This is very common with autism. The people wanting a cure want me to die. I would not be me without my autism. I am not sure what the suffering is that I am supposed to endure. All of that suffering comes from outside. Some of it is not actual violence against my person, some of it is just the experience of the world itself. It can be painful. Most of it is however the doing of man. My parents sending me away because I was different, drugging me to try and make me appear like they wanted. This was painful. It still is. I am familiar with pain. I am not finding any specific pain that Autism caused.

Some people may feel pain. I know that some autistics are violent. Some harm themselves. Instead of curing the entire mind, throwing out the person, shouldn’t we focus on trying to help them to learn how to not hurt themselves? Spending years without a diagnosis because I could do what it took to not die, I could blend, my perspective is different. Who would I be with a diagnosis and proper developmental treatment?

That is the reality. I chose to blend in. I choose daily to advocate. I choose every moment. I am hyper aware of my choices  but are you? What is the reality of the choices you make? Do your choices oppress someone else? Do your choices free someone else? What balance can you offer the world by making good choices? This is the reality of choice.

Damaged Lives (Trigger Warning)

After the end of this paragraph is an unedited account of my Death. This post contains a Trigger Warning even for those without PTSD. There are graphic descriptions of rape, violent abuse, and I am sharing the day that has yet to be topped (and hopefully never will be) as my worst day. Comments for this post are closed, due to the difficulty in even writing this out. I also am going to take a small break before posting again. This will likely just mean a single day, so check back on Tuesday.   One final note. This is the set of memories that when remembered caused my first experience with being devalued and victim blamed.

This last addendum belongs before the break in my opinion so, here it goes! The DA when the report was filed admitted to me and my guardians that due to the legal wording the Statute of limitations was in effect, and he could arrest and prosecute my father but because I had a history of PTSD he didn’t believe it was worth his time to try and that I was worthy of justice. The Worthy of Justice bit is his. It was my fault for being traumatized. I took this to mean I deserved the abuse. His choice to devalue me as a person and a victim nearly killed me. What was the point of living in this world if there was no justice? It had been hard enough to say something about this to a man, to admit that I was a dirty slut as I saw myself, then to be told my attempt to do what everyone says is the right thing, all the TV adds, all of the adults around me, and even  he himself pushing into my head that I had to tell when someone hurt me… to do their right thing and be told I was not worthy of the actual right thing damaged me just as much.

I have nightmares of that choice too. Even writing about it I feel the emptiness and pain of rejection. The only reason I did not give up? My roommate in the facility told me she would kill my father for me if she ever had the chance. We made a secret pact to kill our abusers.                                        Continue reading

Saturday Silence

I locked the cats out of my room. It was a moment of great opportunity. One was in the litter box, the other was chasing a lazer beam up the wall. The door was shut and with that I curled up, letting myself drift out on waves of exhausted sleep. I crashed early. Due to years of insomnia six hours is good, but, the peace of living in safety, with someone I love, and knowing I can shower whenever I want? I haven’t had any trouble getting to sleep here by four AM. It still bothers me when I have to be up at eight and I am staring down the clock but I can function for three days on four hours. It is nice to not have to.

I dreamed some really interesting stuff last night. I had a giant pink robot a bit like Voltron but, this one had Catnip Canons and Anti Allergy Grenades. In my dream I could destroy everything I was allergic to. I did, and became the greatest super villain ever! I kept giggling in my dream because it was just too fun to blow up cucumbers, though, eventually everyone else was just as hungry and bored with my diet as I am. That is how bored with my food I got. I dreamed of destroying your food, so you could share my boredom. In the end I re-engineered foods that we could all eat, though most of them tasted like tea and pomegranates. The Pomegranate is the one food I have no issues with.

I could live on pomegranates alone, if they were a year round fruit and not so expensive. Their rich flavour, followed by an improvement in pain level, a need to not take pain meds for two days if I eat a half, a week if I eat the entire thing, and the grand finale? No allergic reactions what so ever. This is the fruit of my dreams in my reality. I want to visit them in their native territory someday, gently petting the tree trunks, talking to my future dinners. Celebrating them in their nascent state.

It is quiet this morning. My neighbor is not vacuuming, though that is actually cause for alarm due to her constant need for clean. There are no screaming children. There are no car alarms. I did not wake up with random Batsignals on my forehead, and locking the two cats out only made them super snuggly. I like quiet. Apartments are rarely quiet. Upstairs neighbors walking, the floor/roof creaking as they do. It always sounds like they will fall through squashing me into oblivion.

I didn’t hear the whirl of technology either, just this pleasing idle. Despite the upheaval of yesterday, there is peace to be found. I also do not have to deal with any doctors or idiots today. Tomorrow I visit my mother, and although that will be exhausting, it is a day of peace. We’re eating at her house, I am picking up some gear for a speech, and I get to see my beautiful siblings. I ask permission before posting people’s faces on the net, but if I can get it I wish to show you my gorgeous sister and my super tall military minded brother.

B, my sister, is tall and graceful. She has the body for modeling, and not the plus size modeling that I did. She is the epitome of desire set by the media at this time. She is not trying and often is embarrassed and teased because she looks like a barbie doll or a porcelain doll, depending on her outfit. She has long platinum blonde hair, big hazel eyes, and will do greater things than modeling for her career. She chooses her brain over her body. “Kat, I am pretty now but what if I fall off Dixie,” Her horse,”and wind up in a wheelchair like you? They don’t want wheelchair models.”

She desires security over fame and fortune. I wish I could tell her that it could never happen to her but our mother almost broke her back falling off of a horse, and B knows all about Christopher Reeve. My grandmother screams it at her every time she finds out B has a horse. She might actually be forgetting, but with her it is hard to tell if it is just a desire to scream at B.

A is my dreamer. I am a bit possessive. They are my A and B, and I do not share well. He is nearly seven feet tall, and has recently begun to pursue his dreams by joining the ROTC. He looks good in uniform, but, for some reason when he wears the uniform he actually looks his age. He just turned 16 and has his license. Be afraid. He is prone to day dreaming and with undiagnosed medical issues, there are consequences. His father forbade diagnosis when he was younger, trapping him with a future that is bleaker than he realizes.

In my Saturday Silence, as the world drifts on, sleeping late today, I have a clear view of the future, of the past, and of the moment. I meditate on things, and I know that yesterday merely gave me something else to fix. I am no longer angry about losing out on my dancing, teaching, and other physical careers. I have something more powerful than what I would have had if I continued on the path of physicality.

Dancing makes a difference for some, I could someday dance in a movie or a music video, I could have a great career. Advocacy gives me time to breathe. Even when the pressure is on and there is fear fueling my fight more than strength, when I advocate I know exactly how much power I have. All of it. I do not feel weak when I advocate, no matter how tired I get. I have a sense of purpose that is hard to match with other goals I have had. When I advocate it is with the knowledge that I am changing the world. One tip of my hip, a slight twist of my leg, a rolling display of muscles and the freedom to shake and move, that held personal power. It felt beautiful. I felt deliciously free.

One phone call to the Governor. One conversation with a reporter. One word of support offered. One person made aware. A life of passion. This too holds power but it is the power of change, the power of equality. After sleep, after finding that I am not as alone as I felt, I am empowered in my moment of silence. I play out the moments when I nearly failed out of fear, the errors others made and that I made in this fight. These are armor.

If I recollect and prepare the times when I have been threatened, I am prepared. It is oil on my armor. When I remember what words worked, that is sharpening my sword. Saturdays of silence are not silent. They are just times to reflect and prepare for the next battle in this war. I hear the birds singing, and I know that the fight will be long and hard. I also know I will win. I may cry, I may bleed, I may wish to flea, but in these moments of solitude with my peace held in my heart I know too that nothing can stop me. I am changing the world with every word, every breath, and it is too late to go back now. The world is already different because of actions that I have taken, that you have taken, and the actions of the future will just give us more strength.

Sharpen your swords, care for your armor, feed your companions. Feast and Celebrate. Enjoy the moments of peace and silence. We are at war. We are an army, an international one at that, and nothing can stop us for we have nothing to lose and only the world to gain. Lets rule the world!

Dancing with Limited Mobility

I miss dancing. It was one of my jobs, but just as writing is like breathing, it was also a part of my life that I thought I would have forever. I started dancing when I was three, my Aunt’s daughter taught Ballet and we had lessons. I remember my pride at being able to lift my leg high, and the motions, the grace. I felt like a fairy princess during every class. I never wanted it to end. It did.

My father decided that dancing was just too good for his children, so the lessons ended. The ideals and memories did not fade. I discovered Belly Dancing when I was 17, and I once again found myself moving to music. I could feel it in my blood, coursing through my veins and just as singing, it took over my soul. I could leap, I could twist, I could use my hands and my entire body to entrance someone, as I celebrated the life that is in music.

I was the healthiest I had ever been, and I finally had a job as a dancer. I was reading through the contract to sign on as a permanent dancer with a troupe when I broke my back. I knew something was wrong immediately during practice when I first lifted my arms over head and wanted to scream. I still danced, but, quickly gave up on it. I couldn’t make my body move the way it used to. I had lost the silken rhythms and was trapped in a world of pain. It was the first blow of depression. For a time I wanted to die. If I could not move, what was the point of living?

Four years, maybe more as my time line sense is skewed, and I find the music still stirring my body. Every time, if I twitch my hips slightly my spine begins to burn and I cry. I am failing to resist the lure of a simple beat. I can hear it in my head, my heart pounds and I want it. I cannot strike the poses from my modeling career, I cannot dance… or can I?

Thanks to William Shakespurr I discovered a new method for dancing. He has mastered the remote control just as Sprite has and was watching fashion shows. He has a love of the bright colors and I think it is the techno that is the latest in fashion runway modeling that draws him. I could not resist the music. Tonight after a satisfying, if exhausting Career Builders Toastmasters Meeting I flopped into bed and got comfortable. I left the TV going and reminisced.

I remembered walking on the catwalk, Striking a pose, my body in line, my face the face that the people watching wanted. My body the perfect display for clothing, to make you want to buy it. I struck a pose, laying flat. I crunched horribly but despite the protests of my frame, I felt free. It wasn’t nostalgia, my mind was not trapped in the past, it was just the giggling and playful side that I do not let out as often.

A commercial came on with music and I moved my arms, my back is supported when laying and so it doesn’t have me tipping out of my chair. I was dancing again. This is how I dance now, a fresh discovery. I can twist, I can move, without really moving. I can feel the rhythm and I am not trapped now. My limbs feel freed. I know there will be conecquenecs in the morning, there are already now with my hands refusing to respond as fluidly as normal. I am forbidden to move like this by my doctors, yet, I need it for my soul.

I will have no regrets tomarrow. I have none now, and I am free. I am dancing in the air, I am floating in the sea. Nothing can stop me, for the melody frees me. Twisting, twirling, weightless, and so alive. I burn, not with pain but with Passions that have long been starved. Model, Singer, Dancer, Teacher, Writer. Who I have been? Who I am.

Beauty

I am tired of the stereotype of beauty. I grew up being told that a girl should like men who look like Brad Pitt. I like women with soft lush curves, big and strong ones too. Many would consider my past conquests masculine, or overly thin, or fat. No one type fits what I like. I too have “strange” preferences for the men I have dated and these too tend towards those with meat on their bones, they have body hair, they are dark skinned, fair skinned, or really just alive.

Most of them, but not all, are tall. With either sex I tend to reach out for the taller people, though tall has changed in meaning since the wheelchair entered my life. I can’t look up at my baby brother without hurting my neck. He sits down for me, and still towers above. He is about seven feet tall. I love height because my family is full of tall people, except my own biological father. I associate height with safety. What does this mean about the other standards of beauty? Are we all programmed to like certain things?

Yes!

A huge part of my persecution in this life has been based on facets of my physical appearance. I have red hair, very pale skin that burns the instant sun touches it, soft full lips, and I have always had curves. My smallest size is a fourteen. I was barely eating to maintain that. My body needs meat on it. I am simply a curvaceous woman. I do have an ample bosom as well, and all of these things have been picked at.

I grew up being told I should be blonde. Blonde meant perfection. I hardly find blondes attractive as a result. I am aware that most of my siblings and my own mother are all blonde, and this factors in too. I think Blue Eyes are the best, though any shade is lovely to me. Blue eyes were mocked, because they are pale. Being a minority as a white person is very rare in any part of the world, the patriarchal structure still dominates and is usually white, even in countries where white is the minority. I have always been told my pale skin makes me wealthy. Whiteness in my state is a status symbol.

In India women who are by nature in the darker end of the spectrum are considered harder to marry off, they have less value based on something as simple as their genetic make up. The lighter you are, the more respect you can gain. This is White Privilege. It has defaced an entire culture, this love of all things white has poisoned us. You see whiteness in media, dominantly with able bodied super muscular WHITE men. You see their blonde perfection everywhere. I think back to the Nazi Propaganda studies group I was a member of in High School, and that is what I see. Reflections of past propaganda, continued, accepted, and fully realized.

Curly hair is considered disheveled. Girls with curly hair wake up at odd hours to iron their hair out. I think it is lovely, and my standard of beauty includes the use of a curling iron to add curls to my hair. This is rare, the era of the Super Perm died out at the end of the Eighties, except for a few hold outs.

I am told I must wear make up to seem presentable. I do, at times like to wear make up but I do it when it feels good. Usually I will also hide some of my facial scars under make up, if I cannot shake my feelings of Paranoia. I do not allow myself to wear make up on days when my self worth is being questioned, or when my confidence would hinge only on sultry red lips.

As I write this I am watching a movie that has what I consider the equivalent of Black Face. Sophia Loren is the Millionairess, Peter Sellers is the Indian Doctor who teaches her how to be more than a spoiled snob. This movie is full of propaganda that is anti woman, anti persons of color. I was enjoying it until I realized the fallacy that a white man is playing an Indian, with hardly any alteration of skin color and a very cliched accent.

I also note that the famed figure of Sophia Lauren seems to be aided via a corset. I might be wrong, but the extremes to her figure seem to need assistance. It doesn’t feel natural to me, though it does fit the “standard of beauty”. Her hair is lightened a bit, and of course she is always shown in posh and polished appeal during this film.

I do not think Brad Pitt is handsome. I think he is mediocre. This is all about looks, not his acting. I will not malign someone for having a career. I will however state that I do not understand the requirement to find him attractive. If you want to know who I find attractive in Hollywood, you will have to dig deep. There are few people that strike me as gorgeous or stunning, especially since we have entered the Anorexia Age of Hollyweird. Health is beautiful. That inner glow of self acceptance can make anyone gorgeous.

Since my blossoming into awareness about privilege I have seen more beauty in the world. This side effect shocked me. I like to compliment people when I find them attractive, and I have had the urge to tell the entire world how beautiful it is. The beauty I see is nothing like what is in the Movies or on Television. I live in a world of diversity. The people I see daily are of mixed race, from other countries, and their voices alone are a rhythmic song.

I am not beautiful by the overly BMI oriented modern sensibilities. I never will be. I’d have to break my bones, cut my body apart, inject myself with dye, and lose my sense of self. (This statement does not mean that those who naturally fit this standard are not beautiful, it is merely a rejection of the expectation to alter myself to be just like them) I reject the need to starve myself to fit a rare body type. I reject the fashion industry’s expectation that “fat” women do not like Fashion. I LOVE clothes shopping, and am discovering that I could easily spend a million dollars on cute shoes. These are cliches about womanhood, and yet you will find I only have four pairs of shoes, two for winter, two for summer. My clothing is all rather sensible, black, and boring.

I am pigeon holed by my lack of thinness. I am trapped by the need for others to stigmatize those who are not identical to them. I am not a Stepford Cripple, I am not anything but a person. I am flesh, I am bone, and I have soul. You are beautiful. My friend who is an immigrant is beautiful. I love listening to her voice, the way that she sings while she speaks entrances me. My friend who is the son of immigrants is beautiful. He cannot see that because his world is full of hatred, hatred of the Other.

I discuss privilege with my friends. It is an unavoidable conversation now. Eventually it is addressed either by discussion of politics, feminism, or simply the venting of frustration. I no longer hide my beliefs, to survive until the next day. I am free to speak them. Most of the time these conversations hold a similar impact, someone learns something. We all do really. My friends are all shapes and sizes. I have friends who are thin, blonde, and blue eyed. I have friends who are extraordinarily fat, but give hugs that are so soft. I have friends of every shape, size, mental capacity, and ability. My friends are all beautiful. You are beautiful.

Stop stigmatizing people for not being clones. Clones are scary, according to the media pundits and science fiction. Every time the word cloning is mentioned on TV it is with the hush of fear. Disability also has that hush of fear. Stop being afraid. Fear stops you from living life. This doesn’t mean you should ignore some fears, such as the fear of hunger or the fear of a snake bite. Stop fearing things that are different. If you do not understand something, educate yourself. Don’t fear it. Don’t shun it.

This includes fine art, not so fine art, but most especially people. Children are people. Women are people. I see often abuse launched at those who are different. I experience it every time I go out. I was reminded however, of the power of kindness and decorum.

I write often about the importance of gentle resistance, passive resistance, and not striking back. I admit I fail this way at times but, every so often I am given the reminder I need, the proof that I am right. I had transferred out of my chair at Sam’s Club, into the van and rolled down the window. Beside me a harried mother of two beautiful children, her disabled mother, and a cart of groceries struggled. I watched in silence, until they were about to leave, calling out to the woman that her mother had forgotten her cane.

Her son looked up as she thanked me, glad to not have to spend another twenty five dollars on a cane, and said, “Mommy, that’s the lady from the Walmart with the kitty!” His mother paused and said, “She was on TV too.” We talked then, and I complimented her for handling the stress. I could see she was frazzled, and I let her kids talk to Sprite while she settled them in. No petting of course, but, I told her how beautiful her family is. Three words. “You have a beautiful family.” Okay, five. I never was good with numbers.

She froze, looked at her kids, and then smiled. “I wish everyone could see that.” The thing I have not mentioned is this. Her children are Triracial. They are of Asian, African, and Caucasian Descent. I wanted to take them home with me, their sweetness gave me a rare pang of desire for Motherhood. It went away before we were out of the parking lot, but not the reminder that everything you do has a lasting impression. Every word, Every laugh, Every shout, every time you teach someone something. There is impact.

What draws me to people is never what they look like. It is instead their personality, the joy they have for life, and sometimes the hope that I can grow up to be like them. I may never grow up. I am always surprised when I realize for a moment I am not a child anymore. It fades, but, that too reminds me to be innocent.

Beauty is not in the eye of the beholder. It is not what media tells us it should be. Beauty is merely in the existence of life. Flowers, Puppies, kittens, children, lovers. All beautiful. Be you a Homosexual, Transgendered, A person of non Caucasian ethnicity, red haired, blonde haired, black haired, green haired, or even a strange shade of orange. You are beautiful.

Emotional Agony

So often, I find myself belittling my emotions. This is another practice from childhood, and it can defeat me. It sets me up for failure, infects my heart with discord, and leaves me acting as an Angry Cripple. It is a challenge to fight the urge to tell myself how little my pain matters.

recently I have been displaying some of the life long bits of my soul here, many of which bear bruises and scars. This is painful. There are over 100 posts that have been written but you will never see, because they hurt too deeply. Some have been rewritten, to remove the deepest secrets, hiding them.

I realize this is not something that is unique to me, and is instead very common especially with Women who have disabilities. A disability is anything that interferes with functions of daily living, and therefore I do count mental health issues as disabilities. Not all disabilities are so severe that you alter your life and build it around them, but, that does not mean your reactions to those “minor” disabilities have any less validity.

I am writing this post, because I have heard five times in the last two days, read it twice, and tried to deny a growing anger that these words cause this lovely statement, “Just looking at you, I realize how little my pain matters.” This is crap. This sort of thinking and self devaluement leads you down the path towards self hatred. Self hatred is usually just a mask for inner pain, layered with anger and other poisons. Stop it.

I know, my body is a very good example of what you do not want to live in. My body is not your body, and although my pain is epic to me, there is someone out there who has it worse. I can name names, I know of faces, and there are people who walk, that still have it worse than I do. My pain is equal to yours, not less, not more. Equality in Pain is a concept that I learned about when I met a girl in the mental health ward. I was actually addressing the issues of my sexual abuse, and, she tried to empathize, revealing why she was there.

To me, the reason, not revealed because of confidentiality and respect of this person, is small. It is insignificant in my estimation of abuse. To her, it was earth shattering. Her world exploded. It took me a lot longer than my stay in that facility to understand the concept offered there. What we experience shapes our views. I cannot show you what I see, but I can try and paint a picture for you.

There is no reason to compare experience. Identical Twins rarely share the same outlook in life, every person is as unique as a snowflake or a butterfly. None are identical, despite outward appearance. It is rude to devalue them or yourself based on your own experience. This brings us of course to racism, ableism, and sexism.

When you say that racism does not exist, it is not truth. It is perspective. You deny someone else’s experience and that wounds you both. You might not understand their anger at your words, and they might lose respect for you. They may not understand too a lack of experience. This does not justify your denial of racism, but, the caveat is that you can learn from the responses to such statements.

Equality is in my estimation impossible. I am an idealist however, and fight for the ideal. Someday, I might just be proven wrong. I do not remember the author though I think it was Vonnegut, but I once read a science fiction story where everyone was made equal by devices that made everyone see, hear, and think at equal levels. They even ate the same food, very bland, all people were the same. This world was horrible, everyone was in pain, tormented, and unable to function.

This was normal for those characters, until one could not be contained. He was above average, so far so that the devices could not contain him. He became violent, lashing out to try and wake the people up. It did not end well. I think of this story often when I forget why people are different.

I do not want to be just like you, and you definately do not want to be made physically equal to me. I would not wish this body on anyone. I also wouldn’t trade it for yours. I couldn’t function with another body or mind, this is what I know. Your pain is pain. Your anger is valid. Your tears, your joys, all of them have as much importance as mine.

I have said this outloud to people, before. Trying to make them stop. Sometimes people devalue their pain in an attempt to pity me. I need no pity. I am a brilliant star burning in the sky, and I know it. No person needs pity. Those who pity are merely blind to the simple fact that everyone is valid, necessary, and capable of something important.

Before you protest, stating that people with cognitive disorders cannot be productive in society, let me correct you. Autism counts as a cognitive disorder, though, it makes my world absolutely brilliant and colorful. I couldn’t trade up, just down. Downs Syndrome doesn’t make a person invalid. Every person with Downs I have met experiences more joy than I can comprehend. You point out that those in vegetative states do not add anything, and, I say bunk. What they did before their brains were injured counts. Every living person has a right to fair treatment, health care, and love.

Emotional equality too, prevents the need to debase someone, to be better than they are. It merely exists, as we do. I exist. You have the right to exist. I am angry for those who cannot see it. I mourn, for this knowlege is powerfully freeing. I dance with butterflies, I sing with the birds, I exist merely as I am and can be nothing else.

You are valid. Go love yourself.

Selling the Magic Cure for Pain!

Right now, there are dozens of ads airing on a handful of stations in your area, perhaps every single one, schilling pain drugs. I tend to change the channel when these magic pills are advertised. Nothing cures pain, it just blocks the signals to the brain. “My Fibromyalgia pain has hampered my life, until I found this pill and became an above average American with no pain who can do it all, this pill turns you into Super cripple and has a musical name to boot! Try Elyricembril today.”

The expectation that these commercials set is unrealistic. I used to hold out hope that a pain pill would come along and take the ache out of my joints, or a pill would make it where my joints would stop dislocating. Tonight, I moved my pillow two inches and dislocated my right shoulder. Right then, a Lyrica commercial came on. I couldn’t change the channel, and saw a bunch of white privilege added in to boot. Not only is this woman schilling a drug, but, her family is all happy, has everything they need despite her invisible illness. There is no suffering all because of their magic little pill. This woman is blonde, thin, and has no needs beyond their pill.

The reality is so different. All these commercials do is add to the sense of defeat that a person with a disability faces. Those who are the hardest hit have no diagnosis, their bodies just fail. They do not get the luxury of knowing why. My list of medical labels is a luxury, I do take it for granted, but it is worse for those with no labels, no treatment, and often no job or home.

A part of me yearns for socialized medicine, with our government understanding the need for medical care for everyone. This would mean my caregiver would not have to ignore those aches and pains he feels daily, that to me indicate that there is likely a problem. As the depression that we are in, it is not a recession that is merely denial by wealthy men who fear the truth, gets worse so increases the amount of untreated medical ailments. Some include the diagnosed but many are ignoring small injuries tearing themselves apart and whispering in their minds, “When this recession ends, I’ll get a magic pill.”

There is no magic pill. There is nothing that takes away the pain. There is nothing that can cure you if you get sick enough. Sometimes you are just born sick. You do deserve medical care, but, turn off the commercials. The medicine that works best for many is not new, but is older medication ignored until nothing sold on TV, written on a pen, or advertised to doctors who are often paid to give out these pills works. There is no magic pill. There is no Truth in Advertising.

I might sound bitter, as I lay here writing. I feel pain in my body with every breath. I know there is no cure. There is no end for my pain. It has gotten worse through my life, each day it gets worse. I have tried everything, and usually once this is revealed my doctors give up. I have not given up. I am far from bitter. I am merely growling at a threat. The threat that kills hope, the threat that removes treatment, and the threat that further disables the mind. There is no magic pill.

If you are reading this, feeling alone, and need support. There is that. Not only are there support groups everywhere, but, you can contact me via my blog either in the form of a comment or using the contact form and I will talk with you. Friendship is free, and is often the best thing for those in pain. You aren’t alone. There may be no magic pill, but, that does not mean there is no hope. If you are reading this and have been feeling the ache of frustration, anger, or sorrow knowing someone else may see these advertisements and feel false hope then the crash that comes after, reach out. After all, if we save ourselves, support ourselves, or merely even convince a doctor to try something old, we win. There are many ways to lose, and the magic pill is one of them.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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