The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

Mourning

After writing my post earlier I left some voicemails with handy men, my friend M said he will pay for it so I can get my bed. I am tired, more so now but as I felt like I was going to scream and couldn’t find peace in my heart I needed to move. I felt pulled, and so remembering I had a ramp decided to risk the scooter breaking down leaving me out in the world. I took my cellphone, my keys, and left the cat at home. I went the way of the pulling sensation, and wound up outside of a beautiful temple. This Buddhist temple is just a block from my apartment. I sat outside and looked at the Lotus blossoms and butterflies, and realized, I belonged. I find that Buddhism has helped me keep calm and not give in to the darkness that pain makes so tempting. Buddhism is not a religion but a path and a way of living, as I was taught. It is compatible with my beliefs.

I sat outside for a half an hour before I decided to go in, and the Abott himself greeted me. He asked me why my heart ached and we talked. I had secretly hoped he would give me permission to continue my relationship with my mother but, “The poison of the heart can poison the soul. Such a pain as you endure was preventable. The poison of the heart will spread. You must remember that your heart is yours.” It wasn’t a way of saying to reject her but a reminder that it is my life and I must come first. Something I knew all along.

I was asked to please come again, as often as I wish, and to bring the cat next time. I ventured out and found the peace that I couldn’t quite grasp. I charged the scooter again while we talked, and decided to risk Walmart. Walmart is a half an hour with these batteries and once there I had to park and charge again. I had another encouter with englightenment. A world war two veteran saw my unique chair and decided to ask if I knew how to get one. I could see his pain, he proudly told me he forgot how old he was and we laughed a bit. I gave him guidance on how to get his wheelchair, as for any of us to admit we need the help of a chair is hard. He told me I reminded him of someone he met long ago in the war. My face, my eyes, but he commented that she had red hair. I didn’t tell him my natural hair is red, and felt a longing for it again. This is twice that I have longed for my hair back at the vibrancy of it’s nature. The black lets me feel safe and I know I look beautiful either way. It is merely difficult. She was a nurse, and he was injured. She was injured as well but hid it so she could continue to serve, her time with him was spent building a trust and she taught him to understand that the enemy wasn’t seeing us as we saw ourselves. It was an interesting story, frightening in some ways but he found comfort in me, and I in him.

I did some shopping, I got a copy of the key to the gate so that my caregiver can actually get in (oops) and a pair of padlocks for my gate. My batteries held so I looked in a few stores and found many things I need, so I took pictures of them with their prices. I bought the nail trimmer that I desperately had to get William, and found two jacket style harnesses one pink and one black on clearance. I sprang for both, and they rang up even cheaper than they were marked. I also got a bit of halloween decore, a little sign that was three dollars and made my entire day. “Wicked Wanda’s Witch Shoppe.” It’s green and a light orange. I named the stuffed witch I got at the dollar store Wanda and she is also green and orange. It’s too perfect to deny. So far this is also my most expensive decoration!

I feel good, if sore. The side walk only has two in accessible areas, one on each side of the road between the shopping center with a grocery store that carries gluten free food, three discount stores, and has everything I could need or want accessibly. I even found the curtains I want for the price I can afford.

I did notice a difference in this neighborhood, normally when I go out I feel invisible and in danger. This time drivers made sure that I knew they were there, and that they saw me. One man stopped when the scooter almost died on the way home and asked if I was alright, since it was going so darned slow. He watched me to the gate of the complex so that I could get home. Normally I wouldn’t want that but I cut it close because I had to backtrack for the gatekeys. Oh I also got some gummy bears. I just needed a small treat and my entire day became such.

Thank you all for supporting me, it gives me strength I cannot find with in myself. I may fear, I may mourn, but I will never surrender. This neighborhood seems very much handicapped friendly, as I found special access points for wheelchairs in areas where it may be more dangerous for a chair to be in the street or normal foot traffic. I’ve never even heard of these things! I dreamed of them. I know better ways around some of the rough spots for next time, though I will wait until the scooter is repaired, I shouldn’t have pushed it. It was stupid, and a mistake. I also feel way better for it. It seems doing what I want is a rarity, and that must change.

“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

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?

Treatment and the Day of Silence

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Dancing with Limited Mobility

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

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

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

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

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

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

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

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

A Time and a Place for Silence

I was trying to explain the blog to someone, and the subject of silence and abuse came up. I have seen several things, in my life that taught me that violence and abuse mean you must never talk about it. I still have trouble saying the word abuse outloud. However, this is not true. The victim’s silence often lets the abuse go on and on and on.

How dare I write these words? How dare I break the traditional silence of abuse? Do I have any idea what I am doing? Absolutely. These were not questions that my friend brought up, indeed he agrees that although there are times to be silent, this is not one of them.

Some of the hate mail I have received on this blog is unintelligible. Some of it is based in fear. Most of it is based in the need to put me in my place, to control me, to try and take away my voice and my power. I remember being told as a child, “Women are to be seen and not heard.” Not children but the female species. I too was assured by my abuser that no one would believe me. All of this horror that I faced? I thought I was alone.

That is why this is not the time or the place for silence. Silence when you are being abused is often deadly. You know those women who are beaten to death? Those rape statistics? Neither should happen. Silence lets them happen. I am sorry if this upsets you, oh wait… no I am not. The point of this blog is to set my people free.

Any person is one of my people. Skin color, intellect level, ability level, none of this matters. If you are alive, you are one of my people. I want to unlock things for you, I want to give you the life you deserve. If someone is hurting you, do not stay silent. Open your mouth, say it loud. If you are aware of abuse, or if a child comes to you and tells you they are being hurt. Believe them! It is not for you, unless you are the police, to investigate the crime. It is for you to believe the child and get them the help of the police who investigate.

Our world often teaches us that bad things only happen to bad people. Bad things can’t happen to you. This is a lie. So, I am breaking my silence to stop the lies. Silence gives your abuser power. Does this mean you have to write about your issues? Does this mean you have to open yourself up to personal attack and the sense of danger? No. It merely means you need to be honest with at least yourself, that yes, this really happened.

Not every survivor or victim of abuse can write or talk about what happened. Sometimes, those of us who can forget this and at times our words might be harsh. I am sorry for those times too.

Silence

Silence is not golden
Silence to that I am not beholden
Silence is a poison
Slowly seeping my life away
Each blow I am silent
I do not cry when it hurts
I am merely silent
Not seen
Not heard

I break the silence
It crashes loudly
I scream
I cry
I shout
I am free.
Life flows back into me.
I speak for my silent sisters
I speak for the silent children
I speak

You listen.
I speak
I sing
Let life flow out from me to thee.
Break the silence.
Break the cycle

This poem is dedicated to those who cannot yet speak out, those who never will, those who die from the silence, and those who survive, and speak up. This is dedicated to you my Sisters. My brothers. This is dedicated to the innocence lost daily. This is dedicated to even those who send me hate, fearing what I do.

This is not dedicated to those who want to take away my power. Those of you who tell me to stop writing because it is not my place? Find your own place and stick your head in it. This is my place. This is my purpose. This is my freedom.

This is not a time and a place for silence!

Agent Double Oh Carrot and M

The internet is great for anonymity. I have several user names out there, including the play on the word Anonymous: Anon the Mouse. Over the years I have picked up friends online. Some people scoff at the notion of friends you have never met in person. I used to think it was silly but I have truly bonded with some of these people. I am also aware of their humanity, the text based nature of the internet can dehumanize, leading to bullying. It can also lead to the shy person, or the person with a speaking related disability, or even muteness communicate with equality.

I have a friend, who we will call M. M gave me permission to write about him. Every day we have conversations that are full of little things from his parents all the way to mine. We talk about everything. M also has helped me stave off starvation, homelessness, and has yet to pester me about the money I owe him. He is one of the people I consider great. Great men do not always lead countries. The last eight years taught most Americans that.

M is an Immigrant. He lives over in LA, and is of Indian descent. His parents left India, went to Canada, and he came here. A very lengthy journey. M is shy, he at times questions why he feels things at all. Some of this is a reflection of the stigmatization by the psychiatry industry to feeling at all. Feelings have been medicalized, diagnosed and it gets harder every year to find anyone who doesn’t qualify based on religion, personal food preference, or how often they sneeze as a headcase. (The term headcase is being used here for shock value, and also to illustrate my lack of belief in the psychiatric system.)

Despite my experiences with therapy and torments, I still see some value in even the conversational aspect, though I am anti medication. Few people actually need antidepressants. Most can make enough progress to no longer need the medicine. M and I discuss these sorts of things. For the last few years, which feel to me like a pleasurable eternity, M has been fighting some painful issues.

Everyone has issues. Everyone needs help sometimes. M is very insecure. Every day he has to fight a malignant thought process, he constantly devalues himself, and he relies on outside influence to determine his self worth. I am not the best friend to have if you are dealing with those issues. I can be rather harsh about things when I disagree, even when I do not mean to be.

His parents raised him with Traditional Indian Values. Often, when he comes to me needing help coping I offer the exploration of why this is a problem. Does this solve the problem? Not always. M sometimes cannot handle the discussions and will tell me so. In our five or six year long friendship we’ve rarely fought, even when we disagree. Our conversations started over something utterly anti feminist, objectification of the body.

That objectification was mutual, and did not last long as we discovered the intellect and wonder that is personality. The internet is great for that, if you use full words. Netspeak annoys me, and M doesn’t use it. If he does, he hasn’t with me. I love him for that.

He recently began therapy, partly because of our conversations. We discussed heavy topics, and after a time I no longer felt it was my business to help him. He needed more than I could offer. He has a great therapist and has begun to grow faster than ever. I watch him change, even if it is merely reflected in our conversations.

Year 1: Conversations centered aruond the superficial, and mutual interests.

Year 2.: The first loan of money to save me from starvation came, still owed to this date. The exploration of psyche began. I turned to him when I learned about my broken back, and he helped me to cope. He helped me to accept the permanence of my disability and never once shamed me. A first. He began to reveal his insecurity with women, his fear of failure, and his pain.

Year 3: We had our first argument. I think it was about Wonder Woman. It was silly. I started to become aware of feminism. M coddled me when I would cry about discrimination, he encouraged me to not give up, and when Sprite nearly died from anaphalactic shock due to her poultry allergy, he did his best to help me pay for her medical bills.

Year 4: I began to write again. We exchanged periods of fearful whimpering, expressing our doubts, fears of judgment, and he revealed an inexperience I had not expected. His issues were effecting his ability to thrive. His past and lack of education on how to cope, his experience as a person of color, and his constant stigmatization based on his body were revealed more fully than even I have managed here, as he tried to figure out how to live. He was being disabled by the confusing messages of the White Patriarch and the painful messages his parents gave that also came from the WP.

Year 5. He began therapy after finding a great doctor. This has encouraged me to try and find a therapist I can trust. (Still looking) Our conversations over the previous year and year 5 evolved rapidly from simple coping skill discussions on to political issues such as Obama’s election, feminist theory, self respect and the influence of where you live on your mind. I discovered Ms Wheelchair USA’s program, and was again encouraged by my friend to enter the competition.

Year 6: We are now in year six, and still we grow. Each day holds new pearls of wisdom, he shapes my future as I shape his just by knowing. He reminds me to try and enjoy the little things, and, often manages to cheer me up even in my bleakest moods. Our future is certain in one way, we are life long friends.

M and I discussed this morning the mistake Obama made, for I discovered it shortly after M’s very own version. We discussed how much ablism runs amok in our world, how it seems so acceptable. Everything can be lame, and if you are offended you are a “tard”.

We discussed the influence of self hatred in his family. Self hatred is something taught in many cultures, especially once the people are conquered. India and their hatred of their own natural colors made me aware of this. I remember sitting in the library, I was very small, and reading about Bollywood. It was newer then, and one actress was being touted for her pale flesh. Confused, I wanted to understand why her being white was more important than her ability to act.

M is Indian. So often our conversations are about body acceptance. He has what I see as an average Indian frame. He is also shaped like my Person. They are both moderately tall, IE average. Both have a good deal of body hair. I find that delicious. Hair should be everywhere. Both have large pectoral muscles. Often the chest of a man, if not flat or followed by a six pack is demeaned, “Oh my gawd he has MAN BOOBS.”

M today related to me tales of being groped because of his chest. He hates himself because the otherness was slammed into his mind again and again. He was assaulted by others in his life, still as an adult this happens, all because his body shape is not flat.

It is times like this, when revelations hit, that I wonder if the media expects us to all become paper dolls, two dimensional cut outs with no personality and the ability to be mass produced. M is my best friend.

Without M, I would never have met my Person. I needed someone like M to come along, to teach me how to trust men. That first year now seems overly long, with conversations that were kept shallow. I was learning to trust. I had never really had the option of trusting someone before M. Everyone else was in my life by the whim of another.

M came along just when I needed him most. I had just broken my back and I was still homeless. He didn’t know that until today,when I asked if I could write this. I am crying when I write again, because I just visualized my world without him.

I would be with the abusive people, trapped alone in my room. I would have no internet, no hope, no Sprite, no wheelchair. I do not think I would be alive. Knowing M opened my life up. He never once did anything to hurt me. When I was afraid, I could turn to him.

I remember the first time I came crying to him. I felt as if I was going to explode. I couldn’t breathe. I was crying and couldn’t stop screaming. I was no longer homeless, but had yet to receive my diagnosis. This was the conversation where I realized he was a friend. I wanted comfort. I wanted someone to trust. I didn’t tell a soul how much I hurt, ever. I told M.

I expected him to tell me how worthless I was for hurting. I expected him to tell me to suck it up. I expected him to tell me how stupid I was for being in pain. Instead he told me this, “It’s okay. You have me and I will be right here. Just cry, do what you have to.” I remember word for word because I held those words in my head and heart for days, I chanted them when each step made me want to puke, I whispered them when I wanted to cry but someone was around. When I cried, those words sometimes made it alright.

I will write about M more often, usually with a tigher focus but first I had to introduce you to him. He is often insecure, he fears being alone, but he never will be. He has me. I love him. He is closer to me than my siblings, he is trusted just as much as my friends who are offline, in some cases more. Without him I would have never let myself date, I never would have found the courage to go back to that first store that discriminated and put them in their place legally. I never felt alone, I knew if I had to vent, cry, or needed a safe space to mourn. I had M.

Every time he comes to me with a bit of pain, I cry for him. Not always literally but I mourn the fact that he hurts. When he forgets to love himself, I do my best to hold up an accurate mirror. M works in the movie industry, he works for a graphics company and they make some of the best modern films happen. He has worked on Batman Movies, he has worked on the Golden Compass. He has dibs on future Academy Awards. M even has movie credits. He fascinates me, he is very unique and I always wish he were here in person.

Even on my bad pain days. M and my Person are the only two in the world I would let see me cry. I hope you find an M. If you have someone like M, then, treasure them. Everyone should be as intelligent, beautiful, and charming as he is. Everyone should be as caring. Everyone should be as willing to learn.

If more people were like M, and many really are a good deal like him, the world would have more equality, more love, and likely no Isms.

Now, just to explain the Agent Double Oh Carrot moniker, that is mine. I play games and one of my online identities is Agent Double Oh Carrot, a rabbit themed super spy. This video is of a 3D program called IMVU (The link is not a referral link, so if you join I get 0 credit. If you are a member feel free to drop me a line, my user name is Anon the Mouse).

I am in the villain’s base, with some of the rabbit themed villains and we are doing the Caramel Dansen. In this game the Villains are turning out to be the good guys.For a HQ variation with some of the same characters, you can check out the video responses.

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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