Blogging Against Disablism

I have restarted this post twice now. Part of it is my pain clouding my mind and a resistance to taking my pain meds. I have not shaken the habit of taking them only when I cannot stand the pain. This has left me fighting off a meanness that the pain brings up. I don’t even feel it at first, but, then I realize I am harboring a great deal of anger. Once I accept that I can take my pain and that it is alright to take the little pill that lets me do more than just deal with it, I can resume living.

I see this as my truest handicap. I am at risk of pushing people away because I fear being addicted to a drug. I am dependant on the morphine, but not addicted. The dependency is my need to actually have a life. I am starting a business, I am following my dreams which I had presumed dead and lost to me for years. I am also using my handicap to my advantage.

I listened to a speaker last night who came to the United States from China. She has not shed her accent, nor should she. In her speech she explained the prejudices she faces as a result of sounding foreign in the united states. This racism that she deals with overlaps ableism. People look at a disabled woman and see her as stupid, inferior. People hear her and presume she is stupid, inferior. They presume that neither set of people has the capability to do brilliant things. We are raised with this belief system. We are told even if not directly by our parents, by the world we live in which segregates the special children, or forces students to take English as a Second Language courses regardless of need based not on their actual language but on their race.

My most recent example of a person using my disability as an excuse to other me comes from the grocery store. I went in with my Person to pick up some items for a road trip, with a client. I must protect myself from allergens and that was the solution. Sprite was riding behind me, tucked under the sunshade, and hiding behind my body. A woman came up, I am leaving out a description of her because when I write it, I other her. That is not acceptable either. She tried to pet Sprite. I didn’t bother explaining anything to her, I said in a very soft voice, meant to be calm, “Please go away.” She exploded. “HOW DARE YOU!” She got in my face, and I dropped the softness, but stayed polite. “Please go away,” She snarled, “You aren’t doing anything and you shouldn’t have a pet in the store.” I replied. “Please go away. I am doing my shopping and I am not here to befriend you, talk about your pets, nor am I breaking any laws. I do not wish to discuss this matter with you and have been polite thus far, despite your yelling and harassment.” I then floored it, my chair whipping around the corner and continued my shopping. Ten minutes later I hear the sound of my Person being pushed. His grunt of pain reaches me just before this woman is in my face again, “YOU DON’T HAVE THE RIGHT TO BE RUDE TO ME!” That was when I stopped playing nice. I let myself snarl right back, though I did not yell, “Really? Assaulting someone who is not involved in our discussion is rude, trying to invade my space is rude, yelling at me is rude, and showing your own inability to grasp the rights of others is beyond rude. Get out of my way, I don’t really care what you want out of me I am not here for your enjoyment. If you bother me again I will call security.” She flounced away, and I finished my shopping.

As we left, the store manager who had the law explained to her as we entered was discussing the incident with this shopper. She had gone to the manager to have me thrown out. Instead she was told this, “I am sorry ma’am but you have no right to touch her, her wheelchair, or her service animal. The law protects her rights to shop here in saftey, as it does yours.” The woman replied , “She’s just a cripple, she doesn’t have any rights.” The manager was openly angry at this, which surprised me since she’d been a bit of a hard case about it all before. I left then, to the sound of, “She has just as many rights as you do, and if you continue to behave in this manner I will have to have you removed from my store.” The woman then threw herself on the ground and had a tantrum like a toddler.

I learned something from this, that was the point of sharing it. I learned that every person I edcuate becomes an asset. I did not feel this woman could be educated, nor did I feel prepred to try and spoon feed her the information. The burden of fuctioning with a disability is fighting for my rights. I use my disability as a tool to be under estimated. The woman underestimated the ability of not just myself but of others to actually see the humanity with in my body. She under estimated the ability of people to actually listen. I do at times too.

The secret to blogging against disablism? Is to do it whenever you write. The secret to teaching aout disablism? Is to live.

I know this post isn’t as wonderful as I wanted, I am still distracted and out of it. I am not feeling myself. I hope it does encapsulate an idea. By living and not giving up our dreams we fight ableism/disablism. By having lives we fight against disablism. I am partly distracted byt a disappointment with Obama and his failure to sign the Community Choice Act. I am disappointed with his inability to see the human rights that lie at the end of his pen. There is still time, but, his administration has openly stated that there is no reason for him to actually make the changes that free people from being forced into Nursing homes.

Beyond blogging against disablism, I call you to act. Go out into the world, be seen. Educate via your existence.

To read more about Blogging Against Disablism Day, please follow this link.

Treatment and the Day of Silence

I am not talking about medical treatment today. I am talking about the treatment that humans offer one another. This is the main reason I do not allow myself to cuss. I want to stop myself from hurting someone without thinking, and that is the most common use for curse words.

I have written a bit about my bullying experiences before, but today I want to talk with you about the Day of Silence and why I am taking part. I keep trying to fit all of this information on a double sided business card. I am preparing, my white board is ready, I am considering which form of tape to put over my lips. I am taping them closed on Friday, so that I do not accidentally babble. It happens. I think I am quiet and I have been talking for an hour about nonsense.

The Day of Silence, in my eyes, is an opportunity to educate those who have various privileges on the oppression that they do not see. I am an advocate for so many and I am advocating with my silence for any without a voice. The main focus is GBLT relations, but, I am adding to my silence the silence of those with a disability that takes their voice, those who are not heard when they speak out about abuse, and those who are not seen. I am taking part in the day of silence, and I call for you to do the same.

We who can speak out, especially with grace and eloquence, have a duty to protect those who have no voice. The world exists today where people who are marginalized are still being punished. A young man hung himself due to bullying. I do not use the word excessive before bullying as many do, because any bullying is excessive. If you excuse smaller amounts of bullying with that one word, you excuse it all.

If you read most of the blogs in my Blogroll, then you are most likely already aware of the Day of Silence. You are likely aware of Carl Joseph Walker-Hoove hanging himself at the age of 11. You might have seen his picture. If not. look into the face of battered innocence.

Carl Joseph Walker-Hoove age 11. He is wearing a football uniform, holding a helmet and smiling.

Carl Joseph Walker-Hoove age 11. He is wearing a football uniform, holding a helmet and smiling.

The antibullying action taken to protect this child was to force him to eat lunch with his abuser. That is as effective as the silence I faced when I was Burned at the Stake. His family is supporting the Day of Silence, as he was going to turn 12 this Friday. The Day of Silence is April 17th.

I look back at my life and see how close I came to suicide as well. I wanted to die so often, but I wasn’t able to make myself or someone stopped me. No one considered the ramifications for this boy. His death is criminal. Suicide? In a way it is murder. Every child who ridiculed him is guilty. They may be children but I honestly hope that they feel the guilt, that it eats at them enough to prevent the next act of bullying. I doubt it. The excuse that Children Are Cruel is not acceptable. No, children are not cruel. They are innocent. They are taught cruelty by the adults in their lives.

We are responsible. If you would not ordinarily take part in a protest, consider it as a way to honor every child who has been bullied because of skin color, hair color, eye color, behavioral difference, able bodied differences, or even for a difference that cannot be listed here. If you were bullied. Take part. If you bullied someone when you were a child. Take part.

This is a call to action. After I get my business cards ready, I will post the file here so you can download and print the minifliers. You can also find information on the day of silence website, they have resources and tools.

This is a way to advocate for yourself, for your children, for the children of the future, and for who you used to be. Stand up, stay silence, and be proud of it. If you are against the human rights of others, you probably aren’t reading this blog.

The Day of Silence Website: http://www.dayofsilence.org/

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

She Wore a White Beret

Sprite adores the French Language. I think it is beautiful but my service cat understands French. I am not sure where she picked this up, but the first two years of her life are just hers and hers alone. Today, at Walmart, we met the most fascinating woman.

When I am old enough to be Elderly I want to be just like her. She has eight cats, speaks five languages, and respected the etiquette of Service Animal interactions, at least until Sprite forced her to pet her via a well placed headbutt. She still asked permission.

Being exhausted, a bit mentally foggy and heading into Walmart usually leads to calamity. Last time I felt this bad and did my shopping I was nearly assaulted for existing, because I get more bull headed in this mode. I am less forgiving, because it takes time to forgive, to ignore the slights, and to not let myself punch annoying people. I still manage, but I am ten times less likely to be patient and calmly explain why they cannot pet my cat, why they cannot touch me, and the fact that I am an intelligent human being.

A cart with a single bag of cat food blocked my path, and I said, “Excuse me.” She turned around, and I saw that this woman had the sweetest face. Her eyes were bright, gleaming with intelligence and years of experience, she held her back straight and smiled. Her smile grew as she saw Sprite. Moving her cart she commented to me, “What a lovely cat.”

I managed as always to not mumble, “I know. She lives with me.” Instead I smiled and said, “Thank you.” Then went to grab a few cans of cat food. She continued, “Is she a service animal?” I paused and said, “Yes.” She turned to another stranger and said, “See, you did hear a cat and i was right.” I felt a bit of guilt then, for I had been less welcoming, though I was trying to just do my shopping and go home. The man huffed, “Cats ain’t ever gonna be service animals.” His jarringly bad grammar made me wince and I said, “According to the law, any animal that can be trained and is not a threat to public safety, while meeting other specific requirements can be a service animal.”

He stalked away, a third stranger laughing, “Wow, Where can I read more.” My frustration was gone. I was shocked, first by the fact that this woman had stopped a stranger from complaining, stating the truth that my animal was likely a service cat, and that they should just leave well enough alone. Then by a request for information. I shared the sheet I have with me at all times explaining the law, and he wrote down a few of the website addresses I have in the first post, about how to Self Advocate.

I had already dealt with a manager who was also accepting of her. Entering the store, I had run into not one but two employees who chose to discriminate. Despite my state of mind and limited ability, everything was going well because I was being treated like a person.

We began to converse then, this beautiful woman and I. She said something I did not understand and Sprite perked, “Oh, forgive me I forgot to speak English.” I apologized for not knowing French, and she laughed. “That is a first. I am used to Americans, especially women, insisting I speak their language. I hear so often how horrible the French are, how we are rude, for expecting people in France to speak French.” I replied, “Well, we expect people to speak English here, and many discriminate on language alone in this country.” She chuckled again, her laugh is so smooth that it was like wrapping my ears in silk. “Very true. You are very open minded, you must not have gone to College.”

This confused me a moment and I blurted out, “Well, I dropped out when I broke my back.” She clucked her tongue, “You should make a better story out of that, you went adventuring and merely have gone to the college of Life.” We traded stories, then, she asked me how I trained my cat. I told her the truth, the same way I used to train my dogs. I rewarded her for good behavior, I punished her for the bad by not petting her and saying no. “She is very rare, her eyes are showing more intelligence than I have ever seen in such a small creature.” She paused then asked, “Do you have provisions for her, should you die?”

Refreshing, to be asked that. Most people run away from the conversation of death. As I wrote about before, I am supposedly going to die before September. I refuse of course, but Death is always looming over me, shadowing me on. “Yes, I have a series of plans, all numbered and written out incase one should fail.” She was relieved, her expressive body revealing that. “Good, so few think beyond their lives. You are rare too.” I shook my head, “No, I merely have lived.” I gave her my phone number, after we discussed a myriad of other things. I wanted to stay in that moment forever, but an alarm went off and I had to go. We will stay in contact.

She was so striking, not out of a physical beauty alone but also because of her genuine and open nature. She showed me an aspect of life I desire, and although my brain is still clouded over and my body demands rest it stood out, sparkling before me. She wore a white beret, a cream sweater, and tan pants. She glowed like a snowflake. Her blue eyes were a bit cloudy with age, but her mind was so sharp and she was open to sharing so much. I suddenly want to go to France.

She also took the time to converse with Sprite, treating her as an equal, and feeling joy as Sprite obviously understood her. They chattered at one another, and Sprite leaned up just before we left placing a kiss on her lips. After we parted ways Sprite made sure I did not feel neglected, though I felt the same warmth and love she seemed to. She rubbed all over me, purring and delighting in our shopping trip.

I even let myself have a treat, I bought a butterfly hair clip. No more lamenting my choice of a hair brush or nothing, I am going to have some panache, and a dose of style when I give my speech tomorrow.

Calling all Politicians

Sometimes you have to pick up the phone and call people. I personally hate telephones. I barely can hear the people on the other end, there is this whine, and not being able to see their faces makes me nervous. What if I cannot hear them? I hate the constant what what whating. It makes me feel inept.

My Person found me a speaker phone, as our cheap little workable phone doesn’t have one, and I was not answer any calls. I just shut down the communications line and went lalalala when the phone rang. I would of course call back if someone left a voice mail, eventually. Some people are important enough to endure the evil phone for. Myself included.

This morning I decided to call my Senators and Congressman to find out what their opinions on Non dog Service animals are. I also shared my need for my cat. This is in response to Obama giving more time before the vote being cast on the DOJ’s pending ADA regulations that would ban the use of any species other than dogs as service animals. The exact regulation in question is “Title III Regulation 28 CFR Part 36: Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities.

This is the very regulation that lead to a comments threat and began my Blogging. The first call was the hardest. I dialed the long distance number to Washington, waited for the phone to ring. Instead of a ring a voice came out, “Martin Heinreich’s office.” I froze, then Toastmaster’s instinct took over. After explaining my call I was given a number that would get me faster results. Calling that, I had a conversation with a young man, who is likely older than I am, and educated him on why this law is discriminatory. He became excited, and impassioned. He told me he will fight for me and others with nondog service animals. I found this video at another  blog. The big event showing her stupidity is at 8:40. At that point you are likely to lose any respect you had for this woman.

I do admit some regulation needs to be made with in the service animal laws to protect service animal users from the Fakers such as Rosie O’Donnell destroying the little respect we service animal users get. I am lucky that most people when protesting my use of a service animal hesitate on the grounds of never seeing a cat who is well trained or can handle the duties and tasks given, but, mine is almost always on her best behavior.

All service animals have bad days. Usually Sprite gets one day off a week. Her first day out after her month of serious illness was a hard day, but, she behaved admirably. Indeed, when I started my phone calls both she and Mr.Shakespurr came and listened. Sprite, upon hearing one of the aides to the second senator protest her existence tried to hang up the phone. I barely caught her paw. I explained her, in terms they could understand. “I can’t bend or walk. I use a wheelchair. She can be an extra long arm for me, or if I drop something, I do not have to wait for someone else to get it. She returned my life and independence to me.” I think the last sentence had the biggest impact.

Six phone calls for three politicians later and I feel good. I am going to help them understand that not all dogs make good service animals and some people need alternatives. I used the phrases, “It is discrimination to vote for this bill, what about those of us with serious allergies to dogs? Should we be further handicapped by this?” Most of the workers held passion. They reflected my own zeal and none of them treated me as if I was not important.

I also called the Mayor’s office and for once found someone who was intelligent and understanding about my call. He made a promise last year to train the local police on how to handle an ADA disturbance. I am often reported to the police as if my rights are a crime, and am tired of their enforcing the negative behavior. I am no criminal, I just want to buy groceries and live a normal life. I am now waiting on the return call, there is an assigned person, responsible for this. This is progress.

The added joy, a rarity with any form of politics and telephones, either alone or together, is the joy of telling someone. “Hang on, I am talking with my Senator.” It isn’t getting to say that which causes the joy, it is the discussion that follows after the call about why I am calling a politician. Why is it important to advocate for my rights? To make my voice heard? Because, if I do not speak up, no one else will speak for me.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

Chain Letters about White Privilege

I recieved a chain letter long ago, and it came around again. this chain letter is about White Privilege. It touts it as a good thing, it even lists examples of privilege. The person who forwarded it to me had a note at the top, stating they didn’t see the big deal. I do. I have discovered most of my favorite blogs that are about feminism are written by People of Color. I am also aware of my white privilege. I wasn’t always but, I must address this chain letter. The letter will be in red, my responses will be in black.

So very sad, but so very true. I am not a racist….I am an American. I am very proud of my ethnicity, as all should be in this melting pot we call our home. But if we are all “equal” why is it that these comments are so true today???

Just how are these statements true? Why do we need labels for each culture that has been added to this melting pot? (Insert required fondu joke here)

Something to think about. . .

This e-mail does contain wording that is meant to express an open opinion to a major problem in the USA . It is estimated that only 11% of those receiving this e-mail will read it all the way to the end. In addition, it is estimated that only 1% of non-white color will read this past this point and 99% will blow it away because of the title. It is a shame this sentiment exists when we tell the world that the USA is the best place to Live, Worship, Work, and Play.

Very bogus statistics. Any time you estimate a percentage without any numbers to work with, it is meant to cause a reaction. I see this with doctors even, trying to ignore rare diseases. It is only rare most of the time, due to a lack of acknowledgment. We tell the world the USA is the best place, but, we live here so of course we will try and seem tough and good. I often see the USA as a little kid throwing a tantrum. If I could immigrate to somewhere I would. Not every person in the USA worships either.

“WHITE ” Pride”

White Privilege.

This is great. I have been wondering about why Whites are racists, and no other race is…..

Plenty of other races are. Every human has the capacity to be racist.

Proud to be White

Michael Richards makes his point………….. Michael Richards better known as Kramer from TVs Seinfeld does make a good point.

He does?

This was his defense speech in court after making racial comments in his comedy act. He makes some very interesting points…

He verbally attacked a man in the audience based on race, because he was heckled. As a public performer I know better, as do most. There was no excuse for his outburst. He could have used any other word.

Someone finally said it. How many are actually paying attention to this? There are African Americans, Mexican Americans, Asian Americans, Arab Americans, etc.

ETC? You want to label people, just to enhance your privilege. That is what I see from this.

And then there are just Americans. You pass me on the street and sneer in my direction. You call me ‘White boy,’ ‘Cracker,’ ‘Honkey,’ ‘Whitey,’ ‘Caveman’… and that’s OK.

No it is not okay. Every citizen of the United States is JUST an American. It is your own racism that is showing as you write this out. My friend who just became a citizen after immigrating is still JUST AN AMERICAN.

It is never acceptable to use racist terms against any person. I also do not know of Caveman being used against whites. I have heard it used against Persons of Color, predominantly those of African descent.

But when I call you, Kike, Towel head, Camel Jockey, Beaner, or Chink .. You call me a racist.

If you call someone those names, you are a racist. I am white too bub, you are being racist.

You say that whites commit a lot of violence against you…. so why are the ghettos the most dangerous places to live?

Whites do a lot of racial profiling in order to further their white privilege. Ghettos are not the most dangerous places to live, in reality they are dangerous yes, but only due to the negligence, police profiling and poverty. You will now likely argue that poverty is a choice. I never chose to be disabled or poor, to have to fight for my right to buy cheese. Neither did they. It is much harder to get a job if you are not a white man. You have privilege. Deal with it.

You have the United Negro College Fund. You have Martin Luther King Day.

We have pretty much every other holiday on the map, and we white folk also have most other scholarships. We too share Martin Luther King JR day. Do you think that the entirety of Black History has no white men in it? Are you really going to claim that the Civil Rights movement had nothing to do with white folk? Some marched with our friends who happen to be of color.

You have Black History Month. You have Cesar Chavez Day.

We have White History Year.

You have Yom Hashoah. You have Ma’uled Al-Nabi.

Again, we have white history year.

You have the NAACP. You have BET… If we had WET (White Entertainment Television), we’d be racists. If we had a White Pride Day, you would call us racists.

We have White Pride year, we have ABC, NBC, HBO, CBS, and every other network out there for what we want. A lot of lily white people on my TV. Not all of them as talented as some of the folks on BET.

If we had White History Month, we’d be racists.

Again? Are you running out of ways to show your privilege? White history year. Every history class focuses on white white white history. I barely heard of the civil rights movement in school. I only learned it happened because one of my teachers happened to be a PoC. I am glad for that because my education would be even more incomplete.

If we had any organization for only whites to ‘advance’ OUR lives, we’d be racists.

The GOP comes to mind. As does Wall Street, oh wait, Harvard!

We have a Hispanic Chamber of Commerce, a Black Chamber of Commerce, and then we just have the plain Chamber of Commerce. Wonder who pays for that??

From what I recall, chambers of commerce sprang up out of a need. The local Hispan@ chamber of commerce came up because the white boys wouldn’t let the persons of hispanic descent in. We pay for it, because we also refuse to share.

A white woman could not be in the Miss Black American pageant, but any color can be in the Miss America pageant.

A disabled person cannot enter the Miss America pageant. It is inaccessible. Even white disabled people. I have no issue with Miss Latin@ America, Miss Black America, or even Miss Fat America. They all exist. If we limit ourselves to one choice for everything, it does not circumvent our privilege and continues the absolutely obvious racism.

If we had a college fund that only gave white students scholarships… You know we’d be racists.

We used to. Most Ivy League schools qualify. We are pretty darned racist.

There are over 60 openly proclaimed Black Colleges in the US . Yet if there were ‘White colleges’, that would be a racist college.

Did you forget about SEGREGATION? A lot of people get illegally denied access to education based on skin color. I am all for the underclassed, non white, or non male having a leg up. It’s called EQUALITY. You claim you want it but you are spewing racism.

In the Million Man March, you believed that you were marching for your race and rights. If we marched for our race and rights, you would call us racists.

A lot of different groups march for their rights. The disabled even do it. Do you really believe there were no non blacks in the Million Man March? What about the Suffragettes? These women were mostly white fighting for the right to vote. They marched. The White folk in this country already have their rights, it is not about taking from you. It is about making certain that everyone has an equal opportunity.

You are proud to be black, brown, yellow and orange, and you’re not afraid to announce it. But when we announce our white pride, you call us racists.

I am proud of who I am, my ancestry is a part of that. This does not mean that as the ruling race, I have the right to expect those who have been dominated, abused, and beaten to not find pride in themselves when a large part of the American Culture is to try and devalue their race.

You rob us, carjack us, and shoot at us. But, when a white police officer shoots a black gang member or beats up a black drug dealer running from the law and posing a threat to society, you call him a racist.

The phrasing on this implies that only persons of color commit crimes. A lot of white people car jack, murder, and beat on one another. Violence with in race is often very high. This includes white people. Not every black person who is shot is guilty, in a gang, or a drug dealer on the run. Not all people of color are posing threats to society. Nor is every white cop going to racial profile. Do you deny that beating a person who is already in cuffs is appropriate? Denying the wrongs that happen does not make the rights apparent.

Why is it that only whites can be racists??

Delusion. If only white people could be racists then, the world would be very different.

There is nothing improper about this e-mail. Let’s see which of you are proud enough to send it on. I sadly don’t think many will.. That’s why we have LOST most of OUR RIGHTS in this country. We won’t stand up for ourselves!

We have lost most of our rights? Since when? Do you mean that enslaving other races is just fine? Do you mean that denying innocent victims is fine? What about segregation? It sure sounds like that is what you want. I am white. I am also aware that being white means I am automatically given more respect than a person of color. We white people have not lost our rights. This letter is a reaction to the fear of losing your power over another culture, race, or religion. There is a lot wrong with this letter, as you can see.

Why is it alright for us to stand up for our rights but if a group of women, disabled, persons of color, or even Gays, Lesbians, Transgendered Persons, or any mixture of the above do, your rights are suddenly going to vanish. Why is a culture and society advancing towards the elusive goal of equality so hard? Why do you see nothing wrong with trying to be aware of white privilege? I am a womanist. I am a white person. I have all my rights. Check under the couch for yours.

BE PROUD TO BE WHITE!

I would rather be proud to not be a bigot, I would rather be proud to be aware of my privilege, and I would rather be proud to look someone in the eye and see that they are a person not a threat.

It’s not a crime YET… but getting very close!

Congress, Most of Obama’s cabinet, and the Senate…. most of them are white. Why would they make it illegal to be white? Are you insane? I think you are.

It is estimated that ONLY 5% of those reaching this point in this e-mail, will pass it on.

It is estimated that ONLY 95% of people reading this letter and reaching this point have not deleted it because it is completely inappropriate, incorrect, and full of racist, white male patriarchial, and white privileged propaganda.

I do not understand the need to defend a racist action. This is the same as blaming the victim for being beaten, raped, or saying someone deserved to be murdered. What ever you believe, at times it is wise to question it. This can shake the foundations of your reality. It can also make you a better person.

I remember reading this letter several years ago. I was fresh into my legal adult status, and I felt things. Disgust mostly. I feared it was true, and realized upon a small bit of research that this was fake. I deleted it and asked the person who originally sent it to me to please go away and not talk to me anymore. My moment of realization caused some over reaction, but, I became aware of the Isms, the discrimination of others.

I had yet to taste it for myself. I post this here, and I welcome you to share THIS version of the letter, if you so desire.

When Advocacy is like an Onion

Advocacy is like an onion. It has many layers, and each layer is not quite the same as the outside layer. Starting from the inside you have a core of people, the advocates for each organization that are well known on a National and International level. Each layer is a ring of less active people, less aware people.

Each layer going out has less moisture and vitality. When you cook an onion you usually peel off a few layers and discard them. This is where Advocacy is not like an onion. You cannot discard the outer layer. The outer layer consists of the people who have no information access. They are the people who advocates need to help the most. They are the most likely to be abused, they are the most likely to suffer, and they are the most likely to desire death out of neglect.

I have been in many layers of our Advocacy onion, and I know those layers very well. I work each day to try and help every layer I can access, and this includes looking for people in need. This sounds paranoid to some when I explain it to them but it is an essential part of advocacy. One example comes from a blog called Chewing the fat. You can read the entire story there, but the author was first abused by a stranger, and then took note that the stranger was a care giver. They then made a choice and reached out. The second part of that story is linked here, I won’t spoil the ending for you, you can read it on their site but know as you do, the victim in the story was the outermost layer of the onion. Now she has found herself on a new level.

The other way that advocacy is like an onion is it can make you cry. I myself am challenged with showing my emotions, even alone crying is a struggle. I have never cried so much in my life as when fighting for the rights of myself and others. Cutting into an onion triggers a chemical reaction, just as at times the tears are triggered by of all things endorphins. Sometimes I cry when advocacy goes so well that the joy in my heart overflows. It can be boundless. Other times my frustration and anger bring me to tears. Any emotion that can be felt can be magnified by the act of Advocacy.

Another way that advocacy is like an Onion is simply this. I hate onions. I really hate having to constantly advocate. I do not just dislike it, I hate the pain. Advocating hurts me, it burns up my stomach at times, it leaves me exposed to the sun, it cuts my soul open and lets even strangers poke at it with their sharp sticks of injustice. I am allergic to onions, they burn my flesh when I touch them, they split my skin, and my eyes like to swell shut after, blinding me.Sometimes people who ignore the truth, wasting my energy and causing pain blind me to the happy moments I can have.

The last way that I will share, but far from the last way that sets out truth, is this. Onions and advocacy can add spice. Isn’t variety the spice of life? My advocacy takes me on a strange and varied journey. I never know what each moment will bring, there is no predictability. This causes me to thrive. Onions add flavour to flavourless dishes, they change things, and they can make a good meal better, barring allergies.

For every layer of the world’s largest onion, there are more analogies. You likely have thought of some of your own while reading this.I cannot ever give up advocacy, for myself mostly, but for every single person that I have helped.

Do you like onions?

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