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!

Personal Space

Before I set into writing the latest post, which proves of all things I am still alive and kicking I have a few updates. First, the biopsy came back, and I do not have cancer. Second, I just painted seven paintings in five days. My hands are sore. Why would I paint seven paintings in a week? One was for fun, six were for a contest. I really want to win, but, only time will tell if I actually do. I am certain a few of you will want to see these pictures. The contest was run by Overground EIC, and as I cannot draw yet, I used their line art. The seventh picture was drawn by a local comic book artist named Paul Ziomek. He’s a really nice guy too. So, here is a link to my gallery on DeviantArt and just in case you want to support artists who are local (to me) here is a link to 7000BC, a local comic book group. They have some really cool stories.

I am actually hoping to start a weekly web comic with someone, so if you know any artists who want to audition, let me know. I will be hosting a contest soon. I already have a few scripts, and it doesn’t take too much time for me to write. In fact, I might even update the blog more often if I do that.

Now, here is the actual blog post for today:

Personal Space:

The issue of Personal Space comes up frequently when we are children. We are taught boundaries, we are taught that we cannot just touch strangers. I was taught this at least, and reminded often that my own space was worthless, but I had best not encroach on anyone else’s territory.

As an adult this was the norm until I started using assistive devices. It was then that I learned another facet of ableism included touching these devices, leaning on them, and even hitting them. Would you ever touch a person’s purse? The answer is usually not without permission. Why is it alright then, for people to smack my chair, try and take the key, or even tell me just how cute it is that I use a wheelchair?

You are probably confused by their actions as much as I am, and you also probably experience versions of this as well. I am not sure why it has become the norm for people to tell me that my wheelchair is cute. I understand the perspective of another person who is shopping for a chair deciding mine is really cool and asking me questions, that is perfectly reasonable, and is something I have done myself. I understand a child needing to ask me what I am driving a miniature care for. I do not understand walking up to someone and smacking the top of their chair and telling them how cute it is that they have a sunshade on their wheelchair.

This happened at a Walgreen’s that is just a block away from my house. My Person and I were there, getting some snacks and were going to rent movies after. I was in glee as I had found lotion I could use with minimal reaction, my arms stayed red for only an hour and eyeliner that I was not allergic to, could use properly, and is hard to obtain. This Walgreen’s carries authentic Egyptian Kohl. I am so excited by this that I actually spent all of my extra money on make up. We were about to check out when the Cashier gushed at me, “Oh how cute your chair is.” I looked at her and told her, “Excuse me?” She repeated it. Then, another employee smacks my sunshade and tells me it’s cool. I decided then and there to put a stop to this.

“Do you really think it’d be alright to smack someone’s cane? Do you think I would go around telling you that your crutches are cute if you broke your leg or your cast is cute? Don’t patronize me, don’t touch me or my assistive devices. I happen to think it’s a shame I no longer get to walk through your store. I happen to think it’s a shame you think that acting like an idiot is going to make me want to shop here. If you touch my chair again I will report you to the management, and if you,” Gesturing to the other person, “Speak to me like a child again, I will also report you to the management. This is not how you treat a customer, or any other human. I am sure you think less of me for saying this, but I think much less of you for behaving in an inappropriate manner.” The woman looked as if she would cry, and the young man who had thwapped my chair had backed up considerably. It took a lot of will power to not curse at them. I wanted to. Instead the woman said, “But it really is cute.”

My person knows I dislike advocating. I don’t know anyone who really enjoys it or wants to spend all their time arguing with people about their own right to exist, but, he has accepted that I will and must. He also has accepted that at times, he must as well. He spoke up then, “Don’t patronize her. Trust me, you don’t want to continue down this path. It’s not a threat, it’s just a warning from a fellow Walgreens Employee, that she knows her rights, and you are infringing on them.” He used to work for Walgreen’s, and as a result I know that the staff are taught to be courteous. I am certain that these two people have never really had to interact with a disabled person.

I am not proud of having to put them in their place or making sure that they feel a little bit less than but, I am still reeling with confusion at their actions. It has been almost a week but I cannot figure it out. This isn’t the first time people have told me just how adorable it is that I can shop, or function in society. Each time I have explained, to the best of my ability and as calmly as I can. I have also learned that it is alright to show anger. Any ‘normal’ or ‘regular’ or able bodied person would be angry if I told them how cute their flaws were, or how cute it was that they were absolutely stupid. I am learning that I have the right to anger.

I will go back to this Walgreen’s. It is a very nice store, and they actually measure their aisle displays for accessibility. I caught them in the act, the manager was correcting an employee on the placement of a standee that held some make up, “You can’t put this here. People will be unable to pass.” The employee walked around it, “I can get past it just fine.” The manager then said, “What about people who can’t walk or use a walker? How about this, if you don’t move it, using this measuring tape for a 28 inch radius, you lose your job. I don’t want anyone to sue me over the ADA or anything like that.” He added something else too, “Oh and what about customer service? It’s gotta be a pain in the (censored) to have to ask for help to reach a bottle of lotion.”

I hadn’t had to advocate to them, but I was watching. I was paying attention. I know that the management at this Walgreens cares. If when I return this patronization happens again, I will bring them into it. I will also offer to train their employees. The only reason I did not have to fight them more was that I had left Sprite the Service Cat at home. She wasn’t feeling well and I wanted to go out.

It was still a lovely afternoon, but, it left me chewing over the concequences of their actions and my reactions. I am proud to state that I did not punch the man who touched my chair. I almost did, but I managed to catch my impulse in time, and used my words instead. I have been having a lot of trigger issues with men and my chair lately. They come up behind me and I want to run them down to make them go away. I haven’t given in yet, but, when the strange males who trigger me then touch my chair, all bets are off!

I haven’t much else to say on this matter, beyond, advocate for your personal space. I didn’t at first. When I used the walker and my abusive roommates would pile heavy objects on it so that they didn’t have to carry them, or when they kept dumping things into my chair so I couldn’t use it when it was brand new, I at first kept my mouth shut. I was so used to staying silent so that they wouldn’t punish me or decide to expose me to even more allergens. At first I let people do things like this out of the house too, because I was afraid. I feel less fear when I advocate. I also worry at times that I am being too sharp, too harsh. There have to be times when I am the gentle advocate, and there are. I worry over it even when I am putting in extra effort to not hurt people’s feelings despite their refusal to let me have my basic human rights. It sounds preposterous when I say it or write it, but it feels right to try for extra kindness.

I am also learning that my Autism may factor into my need to not be touched. I have always been extremely sensitive to touch and texture. I like to control what things feel like around me. I once could not adopt a very adorable and well behaved puppy because his fur felt too stiff. I found him a good home but, I couldn’t cope with the texture. Sometimes texture can even cause nightmares. This adds to my unwillingness to let strangers touch me. I don’t hug people often. I do make sure to touch my Person, but sometimes it takes massive amounts of effort. He is understanding when it comes to my reticence, but I also want to make sure he has nothing that he wants or needs for.

What about you? When you advocate does it help your anxiety level or make it worse? Do people infringe on your personal space? This goes for those with sight issues or hearing issues, do people at times touch you just to try and make you function the way they want? What are your reactions? If you are an Autistic, do you also have touch issues? What forms of contact ableism are you familiar with?

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.

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.

Super Cripple #2- Secret Origins Special!

I have spent several years being Super Cripple, I learned how to act like I was perfectly happy even when beaten, tired and exhausted because of a neighbor. This is another one of those happy attempts, yet it is also colored by darkness. I did not even remember him for a long time, my brain shutting down too often, trying to erase my biological father from my life. When I remembered him, it all came back and I cried. I did not just cry but I cried for days, mourning the years without the knowledge of what made me become better than I could have been.

It was a dark and stormy afternoon. The clouds were thick in the sky and a blast of lightening caused a loud clap of thunder. I dropped the glass of milk in my hands and spilled it. The cup was fine but I knew my father was going to hurt me. He worked for himself, which really meant he slept all day and all night. I was making lunch and had been going to serve it to him on the couch. I had burned myself during cooking but the food was not burned so it was fine, and I knew that my father would be angry if he found out about the milk. I tried something new. I refilled the glass, carried the plate and cup to him, and then went and cleaned up the spill. Then I told him I had spilled the milk.

The end result was just as violent as the other times I had spilled something. I was also locked outside, because of course telling him meant I had to be hiding the spill, I must have done something worse. I remember being relieved that the tears blended with the rain. My neighbor came home, his car was a bright blue with green accents, a classic 1957 Chevy. I always loved watching his car, imagining what it must be like to ride in it. He stepped out of the car and looked over at me sitting in the rain.

His steps were uneven, he limped and huffed a bit, it sounded as if he hurt. He crouched down and looked me in the eyes. I remember his voice being the first that I had heard which held an accent that did not match the one my own has. I was curious. I was also afraid to answer him. His voice was soft, warm, and inviting, “Are you locked out?” I just nodded. “I can open door?” I shook my head no and squeaked out, “I’m in trouble and he’ll kill you!” I was afraid my father would hurt the nice man. He smelled like candy. I also thought he was as old as the God that I believed in at that time.

He smiled, and I remember noticing how many teeth he had. I thought all old people lost their teeth. He was elderly, he was 74 and I was merely 4. He stood up and took my hand, “We won’t tell him you came with me. When do you get back inside?” I answered, knowing the answer from practice, “When my mommy comes home I go to the back door.” He nodded and we walked to his house. His wife wasn’t home yet, so it was just me and my Sensei. I do not know if I ever learned his name but, I did learn other things.

That first day he did not call me any names for being wet, to him it was logical, a girl is outside her feet will be muddy and she will be wet. Instead he wrapped me in a thick towel that was soft, my skin didn’t burn after touching it. It too smelled sweet. He helped me get my shoes off, taking his own off. “In my house we go barefoot.” I thought this must be heaven. I had died, the lightening and thunder had to have squished my brain.

It was real. He took me into his living room. There was no television set, just an old radio and a lot of books. “You read?” I nodded yes, and he asked another question, one few people think to ask. “You like to read?” I hesitated and answered with words, “Only if I pick, but I am not allowed to pick.” He frowned and left the room. He brought me a yellowed comic book, the cover had a yellow sky, a man in a weird costume with a cape and a pointy headed mask was hanging on a rope, choking someone. “You read this. You not like, we will find you something else.” I nodded and opened up the issue of Detective Comics #27. Not only was this an original and nearly mint copy of the issue with Batman’s origin but he handed it over without hesitation to a sopping wet toddler.

Detective Comics #27 Cover - Batman Swinging on a jump line, guns aimed at him, a bad guy in his grasp. Total awesomeness

Detective Comics #27 Cover - Batman Swinging on a jump line, guns aimed at him, a bad guy in his grasp. Total awesomeness

I delved into the story, and I was hooked. Batman had so many lessons to teach about healing from trauma, even in the Golden Age. Also, suction cups are still awesome because batman walked up walls with them. He interrupted my reading to ask if I liked tomato soup and cheese sandwiches, I had no idea so I shrugged. He smiled and carried in on a silver tray, in fine china bowls with silver spoons two bowls of soup and two sandwhiches without their crusts cut into halves. He had even added some cheddar cheese to the tops of the soup. I put the comic down as he handed me my share and asked him, “Why do you talk funny?”

I was forgetting to be afraid. He felt safe and I liked it here. I did not want to ever leave. “I am from Japan.” I had never heard of Japan and as I ate my soup, which became my favorite thing in the whole world, it still is and remained so even through the suppression of these memories, I listened to his story. It was not happy and yet, it shaped him into the kindest soul I had met.

“I was born in a small town outside of Tokyo which is a very big city. My brother had come to the United States a long time before I did, he had a house and wife, and talked often of how Japan sounded on the television. There was also forced enlistment in the army. I would have to leave my wife. I did not know if I could live without her. She and I were forbidden to wed but did, our parents punished us for it by disowning us.” He paused there to explain what being disowned meant, to me it sounded fabulous. “So, I came to America. The war had started, just after getting on a boat to flee my country, Japan attacked Pearl Harbor in Hawaii.” He had pulled out a map and was showing me the different locations. I hadn’t even heard of Hawaii before. “American Citizens who might be Japanese were locked in camps.” I knew about concentration camps, my father often referenced how much he wished he could gas us. I hugged him, my very first time hugging a stranger. He held me and finished his story. “One of the soldiers watching our camp, it wasn’t like the other camps in Europe,” Another bit of map pointing for my benefit, “He gave me his son’s comic books after the boy was done. He shared them with us to try and help us endure. I learned to read english, as did many children. This was my first comic book. I still read them.” This man had kept the comic books through an internment camp, through a long life of struggle.

I knew they were valuable based on that. He ruffled my hair, which had dried out and asked if I wanted another sandwich. I did but was afraid to say yes so, instead of lying I just shrugged. He brought me another sandwich. “You are allowed to want more, if you are hungry. I want to share.” I smiled. I don’t know if I ever had before, but, it felt strange. I finished the first issue and a second, he then went to find a third but it was late and my mother’s car drove up. We wet my hair in the sink, it was still raining, and he helped me through his back yard, it was a paradise of flowers, and despite not wanting to leave I went to the back door.

My father had no idea. In my mind as he helped me climb the fence, I was bat girl. I didn’t know batgirl was really in the comics yet, but, I imagined I was swinging through Gotham city which I was then pronouncing Got Ham… Before we parted ways he told me to come back when I needed to. I ate my dinner, and went to bed in silence that night but I had something to imagine. I imagined fighting crime. I imagined how it would feel to be a grown up and a crime fighter. I suddenly wanted to be a cop.

The next day, and the next, I would sneak out when my father took his nap or I would go for refuge if I was punished. Every day he fed me a bowl of tomato soup and we read comic books. Eventually he apologized to me for not having any Wonder Woman comics, because he gave those to his daughter when she entered college. Despite his heritage, the teachings of his culture, he treated me as a human. There was no sexism I could see. His wife had a job, he was retired. I believe he was a teacher, but I do not know. Sometimes we would dress up, the soft bed linens he used would turn into capes and we’d go through an imaginary Gotham City arresting teddy bear villains.

He asked my name many times and I never wanted to tell him. I was afraid, because my father and mother tended to only use my name when I was in trouble. That was often, as I never could please them. My mother was working three jobs, trying to feed us and my father just found fault with my existance. My Sensei, as I began to call him taught me more than just comics or how to imagine and play. He also began teaching me Japanese. He helped me to master the art of chopsticks and gave me etiquette lessons. He taught me to dance as well, sharing things with me from the world he lived in. Giving me glimpses of a golden age of love.

I too recall his hands. They were knotted with arthritis, now I know the rain likely pained him yet it rained often in those years. He never showed his pain, he was always well dressed, kind, and never yelled at me. Not even when I tore a page in Batman #1. He never made me pretend to be Robin, and always liked pretending to be my Alfred. Those hours of kindness turned into days, then years. In that time, I did share my name but instead he gave me my first alternate name. I was to call him Sensei, as I liked the word and gave it to him as a title. He was happy, and held me close telling me he was honored to be my Sensei. I was his Little Lotus. I asked why.

“You are a flower, all children are. A lotus has many layers, it has many petals. Never let anyone tell you what you are or what you can be. Like a lotus you are special, you are good and kind. You are smart, and you will be someone important. As long as someone loves you, and I do Little Lotus, you will be important to the world.”

I never asked again, but I cried. He loved me. I loved him. I was six years old when we got caught. I had already endured rape, molestation and trauma. My neighbor, a teenager, had violated me as had my father. There were times I wanted to reveal that I had my very own Batcave. I kept it a secret. I was afraid, as we sent one man to jail, that my father would send another off to prison.

I testified against the young man, I imagined I was batman, putting a criminal away. It was the only reason I could do it. When he was out on Bail he came and knocked on my window, sticking his hands under to lift it up and tried to get in. I pretended I was batman again. I slammed the window shut and screamed. This was the only time my parents acted as parents should. My father did this to hide his own crimes, my mother out of the true pain she felt at seeing her babies endangered.

The day we were caught was one where my mother came home from work early. She was either fired or just sick, and I did not hear her car. I had fallen asleep with the latest issue of Batman, finished superman and my Sensei was making tea in the kitchen. I woke to hear my mother’s voice screaming, “WHERE IS SHE!?” My name yelled out. I did not think, I thanked my Sensei, slipped my shoes on and went outside. There were accusations, my father grabbed me by my hair. I then saw who was truly Batman. My Sensei came out, removed my father’s hands from me and said quietly, “Little Lotus, go inside.” My parents were shocked, my father sent my mother inside as well, though she tried to follow me.

I locked the door and peered out the window, watching and listening. I could hear every word. My father accused him of being a rapist, a pedophile, and a monster. My sensei pointed out that due to his age he would be unable to rape anyone, and that he enjoyed teaching me how to be a kind and caring adult. He insisted our afternoons continue, stating that we had done this for years. My father went sheet white at that revelation and called him racially unjust terms. He lifted a hand to hit him. My sensei defended himself, blocking the blows and not retaliating. “She is a good girl, you treat her poorly. I see the bruises. I see them. I have reported you many times to DCF.” It was true, no one knew who it was that kept the government coming but I had lied every time.

The argument went on for an hour, in that time my Sensei’s wife came home, finished making the tea and sat with me at the window watching. She was just as influential as my Sensei, and I will always remember how she smelled of Jasmin and how I thought she was the most beautiful woman in the world, her long hair mixed with greys and black always was styled nicely and she dressed not for others, but for her own comfort.

That was not the last afternoon of my super hero afternoons, it was merely the only time we were caught. Until we moved away, my parents marraige in tatters I saw him almost daily. We shared the comics, other books, and he continued to teach me how to live. Without him I would have been in more pain. He too taught me ways to heal. Things that stayed in my soul when my mind deleted them to survive.

I started out as an imaginary side kick, and often when I am exhausted I imagine too the sounds of a cape in the wind, the feel of my body dancing with criminals. I am a Super Hero. I am Super Cripple, and this is my origin story.

*Side notes*

DC comics owns the rights to the image used in this post. They are also the inspiration for the post title. As you read this, there may be some comic book references that are slipped in. I am a comic book geek and proudly so. I hope you enjoyed the Secret Origins Special.

Pancakes in my Shirt

I walked out of the apartment into the rain and the car, despite being two feet from the front door seemed miles away. I burst into tears. My pain was worse than it had been in weeks. The sun was hiding and I did not want to function. After my shower earlier I realized since water makes me sick my pain might be a reaction to the chemicals in the shower. This is no comfort,but as I took another shaky step, my Person grasping me under my arms and half lifting me as I started to fall I wanted to run inside and hide in bed.

I had fought for this appointment tooth and nail, as had my doctor. I made myself move forward, clinging to the big strong arms that wrapped around me. It is cold enough that it will snow later, the sun napping as it finally acts like Winter. I curl up in the van and try to make myself eat something so that my pain pill will stay down. Two bites and I want to just die. I take the pill, I feel it slowly moving down my throat, Everything is slow today. Like molasses. I know it will be an hour before I feel any better, if the medication will work. It rarely does now.

Arriving at the hospital for my testing we find that the rain has brought out all the placard users. This hospital is very accessible, and yet we had to park in the boonies. I watch in the mirror, as I always do, for on coming traffic so that I can protect my Person. He is almost out of the van when from my blind spot, which is as big as the van anyway, a blue car speeds up nearly running him over. They would’ve hit me if I had been getting out. Pain that the rain saved me. I climb out and drag myself down the side of the van, the car blocked us in so that Person could not come to me, as was the plan. I barely fit between the cars. No apology from the rude driver, just a rude snear.

More tears. The van is six miles long, it has to be. Each tired step my legs want to give way. Why don’t they? I don’t know. I just will them to work. One more step. One more. Pull on, go forth. I barely make it to the chair, my legs giving out as I sink into the seat. Rain is pouring down, it burns like the shower. Chemicals might not be the why of the pain. It is cold, and my shelter is not up. I put the key in, nothing happens. Instead of bellowing like a Bean Sidh I take a breath, I whisper a prayer. I ask for help. We get the chair to run, it putters slowly, slowly enough that Person does not have to run. It stalls out in the door way. We aren’t there yet but the chair fails me. I sob a bit more, feeling guilt over my tears but unable to stop them.

Person hefts the chair up, five hundred pounds. Person is amazing. The chair makes it over the doorjam. A low door jam. I realize I had been being the Wicked Witch, glowering out at the world, I start humming. Dun dan duh dah dah dun dun dah dun dah dan duh… Person catches on and I let out a cackle. My pain is horrible but my mind is clearing. I must be prepared to fight. Sign in, sit down, and wait.

Waiting takes an hour, then, I have the ultrasound. Insurance won’t cover a Mammo without it. No mammogram is in the cards, says the tech. She discovers my breasts are too thick to get a clear picture. Frustration is apparent but she tries. I react to the gel. Not badly but it burns. Everything burns. Life burns today. The air burns in my chest, pain making it worse. I clean myself up and wait. No sign of anything, too much tissue. I get the mammogram.

They ask if I can stand, I try and fall. I am in my chair for the mammogram, pinched and squeezed. Denial, in my head my breasts are slightly above average. I overflow the plate. My breasts are bigger than the machine allows. It takes three to hold them in proper place to position the machine. So many pictures. An abscess bursts, have to retake a picture and clean up again. Everyone is nice, my pain receeds slowly, as the storm passes overhead. My results are given right away, after more waiting.

No sign of cancer, just scars. So many scars. My scars are clear as day, little spots and suns, but they can tell they are scars. They can match them to the flesh, and they do not look the same. I trust them. I am free of worry for at least a year. Self advocated, self preserved. Heading out again, the wicked witch is gone, but I remain. I still burn. The pain is strong, it burns my soul. I burn until the hate comes, then, I hit a bump. More tears. I smile, remembering why I am here. I won. They helped me to get what was needed.

Health is good. Still, I have pancakes in my shirt.

The Cripocalypse (Trigger Warning)

I just woke up, two hours earlier than normal and I have had a vision. A vision of what the privileged folk who refuse to see me as human might see. In truth I was thinking about my father, and how he died. I then realized he suffered for over a year with a bad heart, which means I really need to be careful and have mine checked. I will. My doctor,w hen I tell her how he died will step right up and lob referrals out into space if necessary. My father was one of the most evil persons I ever met. His level of hatred wasn’t just his children or wife, but every man, woman, and child of color, or who was independent, but especially those that over lapped. He told me often about how disabilities worked. None of it was true, and thankfully I discarded his notions before my own disabilities began to force their way to discovery.

The Cripocalypse:
It begins with one, one gimp who refuses to walk. They are just lazy you see but laziness catches like disease. Soon his children refuse to walk. Then they begin to use wheelchairs. Sure some folk might actually need them, like the veterans who let the enemy blow off their legs. After that, come the walkers, they will walk but not if they can’t lean on something. Can these people be more lazy? Not only are they lazy but all of the cripples are mexican or black. You don’t see many white cripples, and if you do they had sex with a (insert racial expletive) cripple and caught it. That’s right, wheelchairs are contagious. Someday, every man will be in a wheelchair, unable to move his body because we didn’t kill the damned cripples.

Yes, he was a bastard. I once made friends with a girl in his apartment, after he and my mother split but before the divorce. He lived there a year before he decided to see who I was playing with when I should have been cleaning and making his dinner. I was only five, but, I was a woman and therefore I was to stay in the house like his personal slave. This girl, I think her name was Jasmin, to me was absolutely wonderful. We played with her dolls, her parents did not approve of Barbie and her stereotypes. In fact her father was the person who defined that word for me. I thought it meant something as innocent as having a newer stereo and an older one.

They even fed me most of the time, for when it was Visitation Time my father made sure to either not show up, or to use my body as he wished, then discard me like trash for the rest of the time. Jasmin didn’t mind that I was afraid of her father at first, she thought it was funny until he explained it was sad. These people were the most accepting people I had ever met. The only truely accepting people. Jasmin and I were playing in the stairwell one day when he woke up, dkscovered I had made pancakes that had gone cold and were slightly burned, and came out to punish me for being five and not being able to cook the food he liked.

I will not describe his physical assault, but I was not his only victim. This was the first time I ran from him. I ran to protect my friend, as he screamed racial slurs. You see Jasmin is black. I have no idea where she is now, that was the last time I saw her, due to my father’s violence against her family. I thought she was beautiful, and I wished my skin was dark. I am as pale as she was dark. She had the darkest skin I have ever seen, it was also luminescent, like looking at a person made of obsidian. She gave me my very first hug. That was how we met.

I was crying in the stairwell, and she and her father came home. She came up and just hugged me. Then we went to play. I do miss the innocence of youth. There was still innocence you see. There were stolen moments of absolute joy, before my father found out. When he attacked me and my friend, we escaped him. I knew I had to go back but I was willing to die for my friend. Her father wasn’t home, we were both alone but we dove through that apartment door, they were our neighbors, closed it, locked it and listened to him scream about how I was going to become a black woman.

Jasmin was also the first person to show concern over bruises. Despite my conditions I do not bruise easily, I never have. My father had also had enough other children to manage beating on us without bruising as much, and rarely where someone might see. He was calculating in his abuse, to make it harder for us to tell anyone. The worst abusers are the most talented at that. The last time I saw Jasmin, I was so afraid that my father would kill me. I even told her father that. I wish I had been smart enough to take his offer up. He offered to let me stay with him until my mother came.

We did try to call her, but, she was busy. My older siblings had refused to stay with Steve, my biological father’s first name, and I was alone except my friend. The police did come, yet they ignored the fact that even his daughter was telling them he’d tried to hurt her friend. This was a defining moment in my perceptions, when the police told Jasmin and her father, to send me back. They stated the Department of Child Services would be out to inspect his care of Jasmin, but surely my father was not really hurting me. They targeted them because of their color.

Often that is the day when I see my innocence starting to disappear. I had so little chance to be a child, but with great joy I remember every moment I had with Jasmin. I remember the utter innocence to be had, before I was taught to hate. It never took. Maybe it is living in New Mexico, where the Latin@ presence is so prevelant, maybe it is the fact that Jasmin and her father cared, or perhaps it is the effort I have put into bettering myself, rejecting the lessons of a false father.

The Cripocalypse is false. I know my disabilities are contagious via genetics. If I could have one last moment to look him in the eye again, I know what I would say. “Steve, I do not respect you. How can I respect someone so close minded as to abuse their children for existing? How can I want you to live, I really was hoping you would die sooner to better the world. You hurt me, and I know you will never care. You just feared being alone when you died, you feared it and none of your children will care when it happens. I am a cripple, who likes persons of color, who likes anyone she meets until they prove they are not worthy of it. You taught me horrible things, to steal, to lie, and to beat. I reject you en masse.”

He is not the only bigot who fears the Cripocalypse. So often people try to hide the disabled, the Persons of color, and yet, isn’t color the most important part of a painting? Art screams for diversity, and the privileged persons always claim to love it. I too wonder, how many more people who hate have died, or will die in a state they most fear?

Does Super cripple help forestall the Cripocalypse?

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

Friendship

In the last few days I have been assessing my friendships. I do this periodically and for the first time in years I have not felt the need to discard a relationship. This sounds cold, I discard people who I no longer desire in my life. It might be an action that hurts feelings yet, that is usually the impetus for cutting someone out. What makes me assess my relationships? Need. I have needs that if my friends cannot meet causes issues.

I see myself as passionate, some will always find me abrasive. I am capable of great anger, but few people even acknowledge this. I am supposed to be quiet, docile. I fail at this. Docility is death in my world. My world is not often the world others can percieve either. If someone expects comfort from me, they may not always get it.

Assessment comes from altercation. This is human nature. My dearest of friends are years long relationships that I foster and tend. Some of my friends barely qualify by the standards of most. I do not see them for years, or only in the text of the internet. This does not mean that they are not friends. To me friendship means communion, sharing ideas, and often healthy debates.

Last night I cussed at someone for the first time, he and I disagreed. He desired comfort. He needed it. He also should know by now (and admits this) that I am not a nurtering type in the traditional way. I do offer comfort, but my comfort isn’t being held to my bosom. It is instead at times a reprimand, other times a reminder, or information that they need to comprehend a deed. My friend has made some wonderful changes in his life based on these comforts.

This conversation lead to the topic of Motherhood. The most underpaid, under appreciated and undervalued position in the world. My views on that are changing. I did not value motherhood at all when I woke. I did not see the truth about it, which I do now. Mothers are not always those who give birth. They are those who teach you, who shape you, and who truly nurture you.

I should have been aware of this before, noting that my own biological mother gets a two word title, to remind others that she is not a mother in my own eyes. She is unaware of this. I am afraid to tell her, because she will likely hurt herself. I have mothered her too often for me to comprehend the value of true motherhood. I am working on it now, struggling to appreciate the true mothers.

I had a teacher in school who went over the line of Teacher into Mother. When I ditched school, I went to her house, ate her food and played with her cats. I had her permission to do this. She saw a need, in a child who was so bored in class that she rarely paid attention, often beat on the other students or worked to hurt their feelings. She helped me grow past my torment so that I could help others. She is not why I tried my own hand at teaching. She is why I survived middle school. My teacher was also disabled. She told the story at the beginning of every year and if any transfer students came in.

She had not taken the medication a doctor told her she needed. She had strep throat and ignored it, and as a result the infection damaged her kidneys. She had a transplant and the side effects of the medications left her weak. She often used a wheelchair because her aging body was just not good enough. She also was known as a cruel teacher, harsh and strict.

She is not the only teacher I had who was known as either the crazy cat lady, a cruel person, or as the meanest teacher alive. Three spring to mind, all of them women. They had standards. That was it. Their classes are those I recall in first Elementary School, then Middle School, and finally High School, where I cared what I did. They are the classes where I actually did the work.

They also shaped my expectations of friendship. None of them told me I was bad for not being able to connect with people my own age. I can do that now, but, when I was young my brain was trapped between too many medications meant to control me, survivng other abuses, and dealing with a body that failed me. I also had to deal with being told nothing was wrong with me, except of course being crazy. No one wants to be friends with the crazy kid, the fat kid, the girl who doesn’t run because it dislocates her hips. No one wants to be friends with someone who is different.

I am still different. I cannot be normal. Normal is a misnomer for boring. None of my friends are normal. They are all shapes and sizes, and all are the most beautiful people I know. If I consider you my friend, it is a rare title. This does not mean I will not associate with people who are not friends, but it does not mean I actually respect those people.

I spent years mastering control of my emotions, hiding who I am. Now, I am mastering being myself. If you cannot handle the truth of my soul, you cannot be my friend. I am a treasure.I am not a burden. Are you my friend? I hope so. None of the friends I have right now have ever failed to measure up to my expectations. It is not always true that people with high standards are lonely. I am fulfilled, happy, and I truly appreciate my friendships.

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