The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

“Happy” Anniversary (Trigger Warning)

Yes, that says “Happy”. I am not sure this anniversary will ever be happy. I chose today to teach a class. I am trying to wind my brain down from the horrors that are the sound of fireworks. I spent the entire day in my room being cranky with myself. I got over that fairly early actually and enjoyed a mental vent session by reading a site called http://www.passiveaggressivenotes.com . Eight hours later I am feeling almost normal and great for a stressful PTSD triggering day. This was the first fourth of July where I did not get sick from the smoke.

I am still feeling like the world is made of sand paper against my skin, but, I can control my snarkiness now. It’s in my head, and that has always been the case. I like to think that even Spock from Star Trek actually thought vindictive things up. “Vulcan Blood. I’ll show you McCoy!” If not, well, I am definately not a Vulcan or a Half Breed so it doesn’t matter. I am just human. That has been the theme for the week. I am just human. I am not Super Cripple, Amazing Woman, or even Functional. Just human. In preparing for the class I am to teach in nine hours, I realized I chose this day on purpose.

This is where I pause, and hide the triggering things, so you have to click a link today to get to the rest of the juicy details. Continue reading

Measles, Mumps, and Rubella

There is this claim floating around the world, people are passionate about it. Autism is caused by vaccinations. I disagree. I know this makes me a target. There are people targeting advocates that do not want to cure Autism. I can’t cure myself. I am not a problem, I am just different. I almost didn’t write this because I am very afraid of whack jobs. I come from a family of them.

I am Autistic. I am a woman. I also did not get vaccinated when I was a baby, or at least not the MMR Vaccine. I had Measles. I had Mumps. I also had Rubella. I had each one. I remember little about the measles, I barely remember much aside from my face hurting about the mumps. I was a bit older when I had Rubella and I remember my skin burning. I didn’t have a clue about the dangers I was facing. More reasons that I am angry with the parents in my life.

I am certain that Autism has been around for as long as people have been breeding. I say this because to me, the way I think is perfectly natural. You may not get from my point A to MY point B. It may be point Z for you. For me it is what is logical. I am not a machine. I am not a robot. I am capable of emotion and love. I dislike the proverbial chick flick because it plays on emotions cheaply. I love action movies, because I can cry when the hero gets blown up but he gets up and keeps fighting at the end.

I am an adult who was recently diagnosed with Autism. I am still learning what it means. I have learned that it explains a lot of what makes me who I am, little quirks that I was punished for. Violent punishments. I wonder too, if my mother’s improper diet, diseased body (She has lupus and it has never been treated), and my genetic history with so many mental health issues contributed. I know the violence in my home helped me mask it. I can make eye contact without appearing to flinch. I can also steal a car, and lie to your face about it. This doesn’t mean I want to do either, or will do either now that I know I do not have to hurt myself.

Still, at times I question the validity of my diagnosis, when I hear these claims. Only boys can be Autistic. Only children who had their vaccinations can be Autistic. These are fallacies. Autism isn’t a disease. It is something that creates people like Albert Einstein. I do not know if he was Autistic but, I have often believed he showed signs of what I know Autism to be.

I feel fear when I hear talk of a cure. I feel frustration when I see that all of the care and support vanishes completely once an Autistic person reaches adulthood. I feel loneliness when I am singled out by my disabilities and am then told that Autism makes me inhuman. All of this is wrong. As you advocate for yourselves and others, you must remember that there is no true inhumanity, except those that refuse to see that genocide is imminent. I understand that living with any non standard deviation is frustrating. I do this daily.

I am so nonstandard I cannot have a cup of coffee. It makes me faint. I am so nonstandard I cannot go into a burger joint without risking death. I am so nonstandard I think it is wrong that people are discriminated against for every possible thing. There is a lot of discrimination with in the disabled community. There are people who use walkers and look down on wheelchair users, there are wheelchair users who think that fat wheelchair users are somehow less than. Every chance we get, we need to not pick at the little things but band together.

I will always bear the scars of my childhood, and I display them here so that someone else knows they are not alone. For all of the Autistic persons who read these words, no matter what you are told the cause of Autism is, what you believe it is, or what you know about yourself. I accept you, I do not want to cure you. You are exactly who you should be and you are beautiful.

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.

I live!

I hope you all can forgive my silence. Here is a quick rundown of why my blogging may become a bit more sporadic. I will try to not be so lack luster in my posting, and I have stories to tell!

1. I am starting a public speaking business. I will try to travel and blog, though until I get a laptop that might not happen. I will try to use the scheduler on WordPress, if I can figure out how to make it actually post.

2. As an ordained interfaith minister at times I perform weddings. I like to assist with the planning, networking resources, and it is another time consuming affair, also at times with travel involved. I am currently in the process of helping plan a huge wedding with in three months.

3. I might have cancer. This year I am getting a double cancer scare. I have posted before about the annual cancer scare. This time my doctors think I have both skin cancer and uterine cancer. I don’t think I have either but we are doing biopsies (which left me incapacitated for three days) and tests just to be safe.

4. I am trying to keep my commitments as well. I am helping to start a new Toastmasters Club at both the local University and one at the other end of town. I am also going to be active in my regular two clubs.

This is all between writing my novel, on the blog, working on my art and I will also be crafting things to sell at craft shows and as special commissions. A lot of this occurs around wedding time. (Feel free to book me as a minister, I can legally marry you in most states and as an interfaith minister am able to work with many faiths. I also perform commitment ceremonies for those who cannot legally marry their life partners in most of the US at this time.)

I will continue my activism as well. It never ends, and although I am tired when writing this, I still need to wash my face to remove the eyeliner Day of Silence writing from the protest, I am exhausted but content. I will try to write tomorrow, and due to the incliment weather might just have more time.

It is spring and SNOWING!

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.

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

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.

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.

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