Pokemon and Homeless Children (Spoilers and Triggers Ahead)

I usually do not blog about brand new shiny toys, due to income levels I tend to be way behind the curve but I was gifted Pokemon X this month and devoured the initial story rapidly. This is my favorite story so far. Yet after that initial story there is another… instead of just endlessly hunting pokemon down (710 I think now) you end up with a VERY socially aware story. I have a page break here so that people wanting to not be spoiled as far as plot can avoid it.

 

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Catnip: My Readers

In my head the title of this post has all sorts of cool robot sounds and lights, it’s half transformer and half comment terminator. Well respondinator. I am still sad, I am still grieving, but I am functional by my normal standard again. I also am well aware I cannot go back and respond to the individual comments of support right now. I know that no one expects me to either, though I try to reply to every comment posted on this blog either publicly or privately. I believe you took the time to write me I should respect that. There are just so many.

I read each one. Each one made me feel loved, supported, and sometimes when I wanted to give up I came and read more of the comments, over and over. Each comment is valuable to me. Each comment is treasured. Every moment when I questioned how much more I could take, there was someone there supporting me. So I could keep going. i could make good choices, I could handle the stress because if I needed to cry, I could either email some of you personally, most of you in fact, or I could write here and I would be supported.

In fact that is just what I did after I realized that I am not alone. I have people here in person and spread across the world who are friends, family, and even really awesome acquaintances that if I really need them will spring into action like emotional support super heroes.

You each are my heroes, you may not feel like it when you seek out words of grief, but groping in the darkness is all there is sometimes and just trying has helped me. I didn’t once get so low I felt suicidal. I didn’t once doubt that there would be another day of living or the value of such things. I didn’t once doubt that I could survive. I did doubt that I could survive without losing my sanity, but, sanity is over-rated anyway.

So this is my reply to each comment. Thank you for your support. I know that though there are only a few words when someone faces loss and they all look the same when you are the one who has to say them, they don’t look the same when being heard. When you really mean it, I know. EAch of you really meant it. In fact, knowing the real support was out there sheltered me from the false support of my enemies, frenemies (I try to avoid having them but some people just don’t let you), and cruel strangers who didn’t understand.

Thank you. I am truly honored to have such a network of fantastic people in my life. I am honored to give you the hard won award for being awesome on this blog. I won’t name names, because the record speaks for itself. (Eventually when there is a certificate for this I will email each of you a copy as well)

A Light In The Window

There is a light in the window to your soul.
The rose it blooms brightly in that light.
The light is a fire that none can match.
That light flickered out tonight.
It was not tears that drowned it for you were of joy
It was not pain that muted it, for pain did not destroy
It was life itself that took it, as life with you fled.
To your God I bit thee go
To your heaven I bid thee go
My heart wishes you safe passage
I know you would not wish to end so soon.
So I will plant a rose on the morrow, and I will remember you.
You had your thorns
You had your fire
I will burn up the town as we did together
I will not forget you
You who saved me from a loneliness I did not know I had
My friend, my companion, until your very end.

Nymph is still alive, but there is another loss. One I knew was imminent but I let myself deny, for as long as a person is alive there is always one more day in the human mind. I have mentioned my friend Rose before, though not by name. Names matter when you are living but when you have died no one can use this information against you, though nothing bad was ever said only good. Rose was my neighbor, and she died tonight. I would not have known for a few days except that her family has also befriended me, and I was told tonight that I am family by her standards and so we will continue on, I support them and they me in our mutual grief.

Rose was a fire. She was someone that could always make me smile, she always had a good joke and even when she was not happy there it was, this spice. She had none of the cliches of people her age that the media shows. If anything she was better at being alive than me. She taught me a great deal, including the fact that it’s okay to be lonely. She didn’t let my numbness when I moved in push her away but instead decided I needed her and that she needed me. She taught me the safe places to wheel around, she taught me how to navigate a few parts of side walk that are terrifying to us both. Together we took on the world.

I will miss her. I will miss Brownie aka Brown Dog. I also knew she was sick. I knew that she would not live forever, and a part of me prepared. Yet I am a bit stunned, not numb because numb doesn’t hurt like this but more in shock. She and I had plans tomorrow morning, we were going to go out because we both needed it. She hadn’t seen me for almost a week, because of my own illness and the issues with Nymph. I had decided to deal with it and spend time with her. She is important to me, and always will be.

Rose, upon seeing my butterflies and action figures promptly made me six more butterflies and offered to make matching swords for them. She thought it was a brillaint home decore scheme and we talked about comic books and movies, we talked about life itself. Rose even met my mother and once she knew this woman was my mother offered to be a surrogate. I told her that was what Sprite was for and she thought it was a great idea as we make better friends. She taught me some things about being alive too.

I just found out. I did not cry infront of her son, because he is barely holding on and therefore I could not hurt him with my tears. I helped him escape the locked gate, one to which only two people have a key. Rose also was an advocate, and she and I took on the established acts of stupidity by the apartment manager often. She would do it her way, which is more direct fighting and I would do it mine with written complaints. When the manager saw us together he would go into hiding when he could. I enjoyed our talks. I enjoyed her dreams. They were contagious too.

Rose also made sure I was eating when I was between carers, she is the friend I may have mentioned in those early posts after Him. She knew I was in trouble and even now she told me in the year we were friends she has never seen someone change so much. I was like a plant with no water when I came so she made sure I had what I needed. This went both ways, and Rose also always respected when I needed to be alone. That is rare in a friend and someone as extroverted as she.

So I will plant a rose in my yard for her, once it is the proper season. I will never forget her, but I also may take some time off of writing to mourn. I will keep everyone updated on the situation with Nymph and if I get sicker that too, but nothing else for a time. Even those updates may be belated. I need to be sad. Rose was like her name, sweet, beautiful, and prickly. She was perfectly matched and she loved the cats.

Brown dog tried to come to me as soon as he heard my voice, I was offered his keeping. I did not accept but was honored to be chosen as well. I will see Brownie again, and Rose’s son. He is my friend too. He thinks I am amusing and likes to make vampire jokes because of course no vampire is as giving as he thinks I am. I may be that giving, I am not sure. It doesn’t feel like giving from here to love people as much as I do them. My mind is full of images of Rose, moments, there weren’t any bad times. We disagreed but we did not fight.

I also know that I will pass on the light she gave me, for it only grows with each person loved. It was Rose’s idea that I try to get another cat after the “monster cat” as she thought of William was gone. She was instrumental in my getting to love Nymph, something that also helped me to feel more alive.

To those who love someone as much as she, there is no real death but life in memories.

Rogue Agent (Trigger Warning)

RageOMatic asked me a question on my last post that I had not been able to answer. I was trying to find the answer, and for the last week or so had thought on this daily. Tonight the answer hit me.

First here is the comment that he left:

How do I step out of the cycle on this one, Kat? If I start crying for all the abuse in the world, I’ll never stop crying again. (Ultimately, I think I don’t cry for the same reason you don’t scream…no compelling reason to stop.) How am I supposed to feel? What should I do? How do you need me, an able bodied, white male, to respond to you?

I think the most profound thing you have said to me, so far, is “I am a rogue agent in the cycle of abuse”. Abuse reshapes your soul to either be sheep or wolf, the abused or the abusee. My grandparents, my parents, my older brothers and sisters, all got the same “training” I did to avoid being harmed by being the harmer, but I stepped out of the cycle.

When I read about the pain you are in, emotional and physical, the wolf wakes up. I want to find the abusers and abuse them. You are not my only friend who carries scars on her body and soul from abuse. I want to find people, and choke them. I want to see in their eyes the look they have so frequently caused in others: the moment when one realizes no fight, no strategy, no inner strength, no god, no anything, will save one…only the whim of the abuser.

I know that’s wrong…so I push those thoughts away. Now I have to fight the sheep. the first thing the sheep mindset says is what you describe is only horrible if its true. If you are lying to get attention, then you become someone lying to get attention. That’s disturbing of course, not nearly so disturbing as the truth of what happened to you. It’s so much easier to believe a woman was only abused enough to lie about the abuse, and not so abused as to be accurately describing its toll on her. Then, the second part of the sheep mindset…well even those parts that are true aren’t that bad…because abuse makes you stronger!

And with a snap, I’ve minimalized your pain, and said you are lucky to have it. All three ways, I’m agreeing with the abuser: (1.) Abuse is a good way to motivate people. (2.) It’s the victims moral flaw and not the abuser’s. (3.) It’s good for victim anyway.

First I want to respond to this comment because this comment is so multilayered. Then I will explain how I was given the answer by M, my dear dear friend who often lights the way on my path when I am confused.

First, Abuse does not make you a sheep or a wolf but instead a victim or a predator. Often both. The Sheep and Wolf metaphor is a part of the mind playing into the lies we are told and sometimes tell ourselves to cope with abuse. It’s okay to just be a person, even if it means you are a person that has been hurt.

Stepping out of the cycle of violence is the most dangerous act a victim can make, and frankly I don’t believe that a person who has taken on the role of abuser can stop, because then they are letting go of a mispercieved “power”. This is an opinion I hope is wrong but it is based on my experiences and some of the challenges I faced when I tried to be the abuser. I did make that choice and those memories and choices are the few things in this life I actually and actively regret.

I understand wanting revenge. In fact, I will be upfront with you on this, if I ever meet my exhusband again I will kill him. If my father rises from the dead as a Zombie I am sure as hell going to take him out. If my Grandmother ever speaks to me again she will meet the wall of silence that I have decided is all she deserves from me. For her that is a fate worse than death. Revenge can be a great motivator for changing patterns. It can be the carrot, if I am alive, living well, this torments them.

Revenge can be a reason to not die. It has it’s purpose but revenge cannot be the only reason you live or you start to poison yourself. Eventually you have to find something past it. In fact my statements above are less about revenge and more about protecting myself. I am not going to seek out my exhusband, because that would be self abuse. I will defend myself and if he dies in the process which I beleive would be a necessity, then I am in the right. My father as a zombie? Off with his head. He’d be eating brains, so since I have one, again self defense. With my grandmother, this choice is difficult because I am aware it causes her pain. I decided that minimizing my pain and regret factor is worth her suffering, because in reality nothing I can say or do will stop her fear of dying alone and the cycle of abuse that follows when she realizes that someone may just want something from her, her other fears feeding into her personal cycle.

Another element to wanting to seek and destroy the abusers is two fold. 1. Having been a victim, it protects you from being victimized by them. 2. An element of this is wanting to protect other people. Neither of these things is actually bad, but when you are raised in a world where self preservation is something “sinful” and you are taught to fear it, you will lie to yourself about the why. I still do and have to actively catch myself and correct the thoughts. Knowing someone is hurting at the hands of others hurts because of the human collective. This is why I cry when I hear about bombings, murders, and child abuse. It hurts me emotionally.

In fact I believe that the factors I listed above actually are the cause of this current war in Iraq. The emotions of the people in my country were played with so that abusers could go and hurt people in the name of protection. 9-11 was actually around the time of my self awakening, and I believe that the abuses and lies by the US government played a part in this, because they were the same sort of lies my father told us about other people (specifically people of color or other minority factors).

I don’t think you want to see their pain so much as you want to prevent it, but I may be wrong. However, that was my personal truth, and it may take some digging through the layers of feeling masks to find out what your personal truth is. When feelings are forbidden, it is natural and “healthy” to put a mask on. It’s a survival instinct. It stops being healthy when the situation goes away. Some people perpetuate the abuse because they don’t know how to function without it. Some tell themselves they like or deserve it and seek it out. Then another set of Victims and Abusers come into play.

This is part of stopping the internal cycle that is hard. No one can see your thoughts but you. I had to retrain my reactions to people. On top of this I had to learn to deal with PTSD, and I had to learn things that I know now are basics for small children. No hitting. No biting. Sharing. I still am fairly awful at sharing. I wasn’t just developmentally delayed or socially delayed but my parents emotionally stunted my growth without thought of what this would do for me socially. Social skills are something abusers take away and I am still mastering some of them. (The Autism plays a part in this, but not as much of a part as most people think.)

What you call the sheep mindset is a response to programming. I always called it trying to eject the tapes, because I noticed for me the voices in my head were of my abusers. The lies that I told myself were mine, belonged to my parents. As Victims we first learn to minimize our own pain, and the post you questioned me on was an excercise in not minimizing things. I still did to a level and may someday write part two of that post but I am not there yet. Instead of punishing yourself for “Agreeing with the abuser” try relabeling things. When you think a thought you know is toxic tell yourself to stop and state the truth.

This is a method I think I found in one of my mother’s many self help books. Most of them to me were worthless but I remembered either reading or hearing about this method and it seemed reasonable. I don’t know what I read but what I did was carry around a small notebook, a tiny pen, and I would make a page for every day, then I would make a line for each bad thought I had to correct. The first day I used four of those tiny notebooks at least. Every thought I had was really repetition and regurgitation of abuse. I had to give myself a goal to do this because it is hard. So I told myself that once I went a week without having to correct myself I would get a soda from the school vending machine. Admittedly I had to steal the money to do it so it wasn’t a perfect scheme but it was a goal.

I then had to make the goal realistic and aimed that I would only use one page in a month. It took years. I actually left the school I was in before then, was sent away to a mental hospital, kicked out of that mental hospital, sent to an exclusive school for broken children (my mother’s words), and was allowed to return home before I managed it. That means it took me over two years.

I didn’t realize until last year when I was writing one of the many unpublished things I putter on that I had really taught myself how to think. The cycle of abuse works because we become afraid of thought itself. Thought shows on your face, it brings up those feelings that make the pain come, and so you must only think safe things. Add in an omnipotent being that has hated you from the womb, something you and I share, and you have no reason to actually think or learn or do anything but what you are programmed to do. This is brainwashing. Admitting that makes me want to cry a little, because it’s something else that I know falls into that spot where I want to dismiss it.

Your statement of steps is active abuse, even if you don’t share it and don’t act on it. I will state you are the victim and abuser when this is all in your head, because it hurts you. If I am unaware that you had these thoughts and even with the awareness I am not actually harmed or the harm is much less than what you have as you have then entered your own self hate and punishment cycle, if I am guessing correctly. I still do at times. I am practicing not giving in there, and though I no longer carry around a notebook I still have to stop myself at times. If I am alone sometimes I will shout at myself in the mirror, arguing with those tapes. sometimes seeing that I am really a person and not a valueless fleshpile makes it easier to stop them.

I also want you to keep in mind that the tapes are a part of what makes PTSD work, and I don;’t know if they can ever go away. You may sheer the sheep but wool grows. This is a life long goal and fight.

Now the truths about the lies that you asked about

1. Abuse has never motivated anyone. If anything that omnipresent sense of dread that is in all my memories up until my adulthood and sometimes thereafter made me want to not move, not breathe and live. Abuse is the best demotivator.

2. Sometimes the victims have yet to speak, this would mean that everything is morally bankrupt, and with good people in the world such as you, even when you don’t believe it or M who keeps me from forgetting I am a person on my worst days this cannot be true. There would not be cats like Sprite, there would not be disability benefits, and there would not be medicine if everything was flawed and evil.

3. If it were good for the victim it wouldn’t break people and have people die. This does not mean those victims were weak but instead that they just broke.

Stepping out of the cycle here is possible. I think this is the hardest part of the cycle of abuse. I had to learn to love myself. I could think for myself once I knew I deserved to do so. Not just that I deserved my thoughts but that my thoughts are things of beauty even if there is a bit of tragedy with in many of the experiences I have had.

You are supposed to feel as you feel. Feelings simply are. Anger is not a bad emotion if you do not weaponize it. Anger simply is. My favorite emotion is Joy, and even as I am writing this I feel joy, because by asking these questions you are freeing yourself. You may have to do so again and again but you are trying, and trying is the only way of doing there is. I think the reason I cannot cry is why I don’t scream, but there is a reason to stop. I am just not sure I would know how to do so. The reason to stop is because of life.

And on the last question you ask, respond to me as a person above all. For that is simply who I am. That is who you are too, so remember that. People are fallible, and you will have days when you cannot stop making tick marks, days when you lie about it to yourself and make less than you should, and days when you run out of paper. Then there will be days when you don’t think the toxic thoughts about your worth, and when you can see other people around you through your own eyes.

M helped me find the answers because we were talking about a Patsy Cline Song, and Jonah Hex. Jonah Hex is like us. He is the product of severe abuse and cruelty. He is trying to make the world better in his own way but he is actively stuck in his personal cycle, and has no help getting out because of the judgement of others that take a scar on his face as a sign of his internal wickedness. A scar made by abuse.

When I read Hex I listen to Country Music. The Patsy Cline Song A Church A courtroom and then Goodbye is for me a reference now to my wifetime. My marraige was short, but before it became bitter it was sweet. I really did and DO love my exhusband. I love the parts of him that were good, the parts he chose to throw away.

He tried to devalue me and instead showed me a part of the abuse I was still in. In my life the only nice things I let myself have were investments in the future, so that I could save money in the long term. So my computers are always expensive but they last a long time. (Five years is a looong time in technology and I can jury rig things for a lot longer with this one if I just don’t save anything to my main HDD.) In fact, I so rarely bought anything new for myself and then it was an item of need.

My nice new clothes he took away? I needed them because I had nothing to wear LITERALLY. I am actually about to go buy pants because I need them and again have almost none at all. My shiny new Batgirl statue is a symbol of my being deserving of want. I deserve to want things. Instead of that being a dreadful affliction, a sin, or something bad… it’s okay. I may not buy everything in the world but as with food deprivation, depriving myself of the things I desire causes me to binge.

I can throw away the sales ads from the stores now. I no longer have to try and fit new trash in with old. I am still working on unhoarding my home but it is clean, the only things on the floor are furniture, wheels from my wheelchair, and cat toys. There is no filth, no piles that I have to climb over, and even better? I don’t hate myself for wanting and for the things I have.

Furthermore I also have something for you and everyone that reads this my dear Rageomatic. Love.

Love is a constant. It is not a weapon. It is not harmful. The idea that love can hurt you is silly. Not everything that has been called love is actually love. If something is called love and it hurts, it is something else. Pain is not beneficial but is a warning of something harmful. It is a sensory antibody. I love. I love everything and everyone. I admit even to loving those that hurt me. Love itself does not mean you have to open the door, open yourself to more pain, but instead the love of yourself is why you can step away from the cycle, and why you are not alone.

When you can love yourself and admit it to yourself, you can give yourself permission for joy. Joy doesn’t fade either but sometimes other feelings occur but that makes the return of joy all the greater.

This is my gift to you, and to myself. Thank you for asking your questions.

Coming Out: a Year of Autism

With the coming of Autism awareness month, it has been a year since I came out as a woman with Autism as a label. It was not a moment planned, it just.. was right. I have known for about two years, maybe three? For me, one of the side effects of my Autism and my PTSD combined is a sort of floating time. It slows, it speeds, it fades, it flares. My sense of time is not very accurate.

I was giving a speech to a small group, and the speaker who spoke before me mentioned something about Autism, and how it was a shame no one with Autism could speak for themselves. This was done before we went on. I rolled up in my scooter and gave a speech about disability. I added the words, “I am Autistic.” I had never admitted it to myself before. The room fell utterly silent, the few whispers froze. All eyes were on me. Faces reflecting what I interpreted as disbelief, some shock, some fear, and one knowing smile. I continued, after a few moments to let this speak in.

My speech altered in that moment, I added more of how my Autism is an attribute. Afterwards that first speaker left without a word to me, they never made eye contact with me again, or really spoke much. It was awkward for them. I suspect shame but I do not care. I didn’t want to hear how my brain is diseased. That was what lead to me meeting up with the wonderful people at Here Be Dragons. (Rawr!) I do post there periodically. I had just begun to read Womanist Musings, and I began to learn that I was not alone in the fight for Nuerodiversity that a burst of temper threw me into.

I won’t forget how I felt like a cartoon, my knees if i had been standing would be at an awkward angle, the light far too bright… The glaring world suddenly foreign, an alien landscape of unknown. For me, being diagnosed with Autism had been merely another label. It had been just another “thing” that built me into a physically fragile, creative and supposedly charming woman. It was just another thing people may hate me for.

Boy do they ever. Jenny McCarthy wants to mind wipe me like some sort of not so supervillain. Autism Speaks wants to cut my tongue out because I disagree with them. I am also proof that they are wrong about the vaccine thing too. All their supposed cures are wrong and full of failings. I never was vaccinated as a child. I showed signs of Autism from birth. I had measels and Rubella. I am left to wonder how much of my health ramifications could be misdiagnosed side effects of these things.

In this last year I spent so much of this time fighting. When I wrote this post I wanted to show a picture of me on my new wheels, my hair back to it’s red, my body back to it’s health. This post is one of the things I tantalized myself with. Where would I be in a year if I lived? Through this blog, which is actually over a year old, I found friends, support, and life. This goes beyond Autism, though my Autism has come to dominate some of what I write about, as I have begun to see that the other advocates for other isms can handle what is going on but Autism needs more help in being fended for.

A year ago my brother was murdered, my then husband had imprisoned me, I was lying and hiding it in terror. A year ago I was starving. A year ago, I thought that my blog may hold my last words. This blog was not originally meant to be so personal either. Through the last year part of my need to survive left me shedding a good deal of anonymity. Renee of Womanist Musings and Kowalski of Here there be dragons both had the largest impact too.

Renee helped me to learn that I can speak out again. I had stopped out of my terror, and she helped me to get that back. I have no issue telling someone they are being racist, ableist, and can stop their derailing most of the time. Renee is a great educator and a great friend.

Kowalski helped me to accept some of my vulnerability. I know I can email either of them if I need to just talk. If there is a moment where nothing else can get me to keep going. Kowalski taught me that it is important to not let my voice be silenced, because with some of my labels it may be permanent. Kowalski also taught me something else. To love me. How? The writings of Kowalski are often a mirror to what I need to face to heal.

I have survived great violence against my identity and person. My right to take up space was violated. I was raped, starved, threatened, and almost murdered. I was worn beyond the brass tacks of my soul. You my readers and friends (there is overlap there) gave me the ability to fix my wheels the first time they broke. Now you get to read about my forcing a new wheelchair out of the insurance. You gave me the freedom and means to LIVE.

I have begun to cry when I write this, and most of it is joy, yet there is mourning. I look at my broken scooter and I think of all the things I did with that freedom, and I think of how closely I came so many times to death. This ignores the fact that I am still fighting suicide. I will win. My scooter even helped William find his new home. He is happy now, I called his new owner and William, who scared me badly towards the end is seen as the best behaved and most angelic feline in the entire world.

I would write even if no one read it. I have blog posts that are hidden away on my hard drive that no one will see, at least at this point. To everyone who has written me using the contact form that sits somewhere on the blog saying I helped you… you helped me too.

As I sit here knowing I cannot ever return to some of my most beloved activities, and in some ways certain types of activism even after I get my mobility back, I mourn and move on. I create new hobbies, new goals, and new dreams. It is no longer life ending to admit that for my own life I must not do the very things that I thought made me who I am. It is no longer the end of my world.

Thank you. I could name more names, but even so there are some names that should remain private. Some people whose names I do not even know who helped me. I hope that the next year my writing continues to help people, including myself. I plan to write more and more. I am still working on getting up to “it” enough to write for the Womanist Musings blog. I may even try art again, new ways new methods. I even plan to find a photographer and set up a photoshoot for who I am, so that the pictures of who I was no longer are the only ones that exist.

Some stats for the last year:

The main page of this blog has had 3,765 individual page views not counting my own

The most clicked on post from around the net is Amazonfail

This is followed by Vanity

My About page is also one of the most popular pages nearly matching the home page stats.

The busiest day for my blog with 591 views came in on Monday, April 13th, 2009

April also was my top month for visits with 3000! However my average monthly page views EXCLUDING April is 1500.

Some search terms used to find me, most popular to least:

The Oblongs

Beth Oblong

Textual Fury

Tracey Ullman

Short Girl Cartoon

Tumor

Kateryna Fury

Ehlers-Danlos Syndrome

“Autism Speaks”

Rules for service dogs

tumor artoon

Albuquerque NM Ehlers-Danlos Groups

Trigger Warning

Carl Joseph (This refers to Carl Joseph Rove, a young man who died as a result of hate)

Murder Kit

Autistic

Autistic “Abusive House”

Tracey Ullman Blackface

Hidradenitis Supprativa

Golfernoggins

“Disability” romance novels

signs of textual abuse

Suicide

how to kill yourself

tired in pain

whatever happened to baby jane

anger cliches

There are way more, I just found these the most interesting or ooooh there’s mah name!

So for the last year and then some… thank you.

Freedom (Trigger Warning)

I have a lot of freedom, compared to many persons with Autism or mental health issues. I have a lot of freedom compared to many disabled persons. I had to fight for my freedoms but I am often left wondering, how much of this do I take for granted?

I eat when I want. In an institution this is not true. I do not take this for granted very often, but when I am ill I take this as a greater virtue. I always take my freedom to prepare my food in a safe environment as a blessing. I still have nightmares about being institutionalized and most center on the food or humiliating moments related to food that I experienced.

This is just an example of course. I have been looking into the way others with Autism who are adults live, partly because I am a late comer to the diagnosis. Most of what I am writing right now comes from inspiration that was caused by Kowalski. I consider Kowalski a friend despite the fact we have never met and likely will not meet in person, yet we have in depth discussions based on our mutual advocacy. I do not know if Kowalski identifies as an advocate yet her work has assisted me with my adaptation.

I know my talent for advocacy has given me a good deal of freedoms that people who literally cannot speak (and therefore often do not have a voice) do not have. I have my own home, I have my pets. I have the ability to choose who takes care of those pets when I cannot. My pets medical needs are met. I do not have to admit people to my home.

I have a very good caregiver, as I mentioned before, and that is another freedom. Every day that Jo comes over and I do not feel fear, or the fear I feel is not related to her presence and she is understanding that I cannot control these fears is a day that I am free. I had to self advocate when I was starved to the point that I could barely think, I couldn’t speak or bathe because my body was also over stimulated after fighting and clawing literally. I had to prove I needed to let go of what is considered more freeing, to hire and fire my own caregivers.

I was unaware of a freedom that could be in too much measure a trap. Letting someone else decide something. For the first time in my life someone else has a say without a court order. Having been institutionalized, in jail (assault charges, I was guilty and a minor), and imprisioned in my home by multiple abusers, I know the pleasures of freedom. I know how rare it is too. I was so terrified of letting an agency handle anything, that I trapped myself.

I feel safer with my caregiver because I can say No. I cannot say no if I am The Boss because then she could quit and I am left without a mediator to get through the weeks or even months until I hire someone. If there was any doubt of my need for caregiving, that was burned away by K and the neglect that I faced from myself after she was fired. The neglect was not conscious but was a result of having no agency and the lack of ability. I can want to do something all day but I cannot always perform.

The freedoms I miss due to disability are numerous. I miss being able to just get in a car and go somewhere. I miss going for walks. I miss working, because I miss to a degree human interaction. I do not miss the false facade I put on to survive in society but I do miss getting to study the behaviors of those around me so that i could try them on to see why and how things worked.

I miss the freedom to explore myself as well, as if you do not go out and do there is little that makes you grow. I am grateful for the internet as this adds opportunities to my personal growth but it is still a difficult path to walk on. All around me I see things that to me are obvious but others are blind to, and I miss watching someone find that oft missed moment.

I am grateful for my freedoms, but, I hunger for more. I secretly wish for the freedom of knowing about my disabilities before I was an adult. Most of them were diagnosed, just left untreated because I was not seen as a worthy candidate by my family. I understand, treating my disabilities is an expense. I just wish I had been worth one expense. Today i told Jo a bit about my childhood, it came up in the context of why I do not let my family visit very often. I left out the part that they rarely ask, because that is hurtful.

I did tell her about my sixteenth birthday, I told her things I rarely tell people but she needs to know. I was sent to several institutions growing up for just being different, and I know this saved me from being without a personal moral compass. I have borrowed moralities and tried them on to see what fits. This leads me to a strange belief system far from the beaten path but it is something I can use to guide me.

I remembered too, these institutions enforced medical care. I would be dead if my mother hadn’t decided I was just not happy enough. Yes, this lead to overdrugging me for most of my life. That lead to self harming behaviors such as not taking pain medications unless I am about to faint. I do take my pain medications regularly now but that is because I am always ready to faint. Still, a tumor in my intestine and gangrene, both caused by abuses at the hands of my parents and my significant medical disorders would have killed me. The institutions gave me the surgeries I needed to LIVE.

The last one, was in a ranch setting and was also one of the places I learned I wasn’t crazy. I have a rare talent with animals, and there I was given the respect of a crusty old cowboy, because I could tame a “wild and raging” animal. There I was also given a specific freedom that I will forever miss. My medical issues made me late for manditory horse care, and I was so afraid of the horses. They are big, I am small. We were not allowed to opt out of riding unless our feet were gangrenous and freshly operated on, and the infection had yet to come to light. I grabbed my saddle, the bridle, and the helmet and was told “Grab a horse and catch up.”

I missed the part of the class where we were told to leave the specific horse I chose alone. I remember his coat, a rich reddish brown color, his scars left black stripes. He was abused too. He had no eyes, which scared most of the others but I just felt sad because I could see the scars there too. Someone had torn out his eyes. This horse was dangerous, even the horse master, a man who had tamed many horses and specialized in rehabilitation of horses did not think he could be ridden.

I was often ignored because I didn’t cause much trouble around the horses. They scared me after all. So i walked over to him, this horse named Gator because “he is as mean as an alligator.” I talked to him while I was saddling him. I didn’t know what to say I just didn’t want to scare him, and so I introduced myself. “Hi Horse, my name is Kat. I don’t really want to ride you but I have to. I just want us to work together, because I think you want to get to run, and maybe it won’t be so bad if we get along.”

I had the horse saddled and was ready to mount up before the staff saw my horse. This was the first time anyone had touched Gator that he wasn’t kicking or biting at them. They had determined he was too dangerous to keep around the ranch but I could ride him. I refused to ride another horse, and because he was calm this was allowed. Gator was my horse. Out of all of the residents male and female, the staff, and the horse professionals that visited only I could ride him.

I was told I am a horse whisperer, but, I can do this with dogs, cats, and other animals. Not birds, because my fear of them is too great. I just tell them what I want them to do and we work together. That was the first time I did it, however. I remember how scared I was. Horses are tall. Obvious I know, but I am extremely afraid of heights. Gator didn’t move at all as I got on him, which confused everyone who knew the horse. He was a gentle ride and I had fun.

We went slow for most of the trail, the group let me set the pace which was probably the equivalent of a ten mile an hour car in a sixty mile per hour zone. We climbed a big hill, I mostly just clung to the horse and talked to him to distract myself. I swear, sometimes it seemed like he laughed at my jokes. No one complained about my babbling for once, no one seemed to care or notice. Then, we reached the top of the hill.

There was a field there, and there were these little yellow flowers in bloom. I let Gator run. The blind horse and the nearly blind girl who had no business on that horse. He was fast. It was magnificent. I let go of the fears, I let them melt away. We raced around the meadow, he trusted his hooves and I trusted him. It was a three hour ride. I didn’t feel the pains in my body until we made it back to the stables and I dismounted. After taking care of Gator and putting up the tack I was told he was mine as long as I stayed. He would have to find a new home when I left the facility but, until then I had my very own horse.

I took care of him every day for a year. I was being released from the program, I had learned how to blend in. I had learned how to heal the emotional wounds I had enough, I even made friends. People friends. I learned how to dress, how to walk, and how to talk like a Nuerotypical person. I faced disability for the first time, but missed diagnosis considerably. This was also the time when I had some malpractice issues with a dentist that made my mouth always ache. Yet it never mattered when I was with my horse. I think I was more his person.

Gator killed someone, my last week there. A staff member. He injured six others. You see, this woman saw me ride the horse and said out loud (obviously this is paraphrased because this is nearly ten years ago. I now feel way old) “If that girl can ride him, I can.” He threw her off because she kicked him. I never once kicked Gator, or did anything in anger near him. Everyone agreed she was too rough with him, and she had waited until she was the only adult around. He dragged her for a bit and trampled people, because they tried to catch him. Gator never found a home, and I never got to say good bye. I think the administrators feared I would relapse back to the dangerous behaviors of bludgeoning people over food.

I admit I do not mourn the human that caused his death. She was warned repeatedly that he was dangerous and chose to believe she was better than a child, and then she was violent with him. This does not mean I believe she deserved death but she did not behave in a safe manner. Horses are dangerous. All horses are. The children and adults that were harmed trying to save her? Those people I mourn. Pain and fear were introduced to both them and my Gator.

I try to avoid remembering that part of my time with Gator however. I will never ride a horse again. Before I broke my back I was saving for a week at a retreat with horses, because I missed the feeling of moving with an animal. I never felt the saddle, I never felt the ground. Gator and I flew. Of all the places we rode together, that meadow was the most wonderful place. My favorite memory of freedom is that meadow riding full tilt with my horse, at sunset. It was a cloudless day, the light was perfect, and I had only one thought. Faster.

I know a lot of rational people refuse to have dieties or an afterlife. I am not completely rational. My IQ implies I should be but my personal experiences prevent that. I talk to animals, they reply in their own ways and I understand. Gator trusted me because I promised him I would never hurt him if he never hurt me. We made a pact through a universal language.

My truest freedom is something I would not have without that horse. Trust. The horse master? I trusted him AFTER I met the horse. I had no one else to trust before then. My trust is more rare than a diamond. It comes on a spectrum as does all life. Sanity, thought, gender, sexual preferences, humanity? We are on a rainbow spectrum. My best friend M, who is the only man I trust implicity and is the only person I have ever loved unconditionally? I would never have been able to trust him without Gator.

I owe that horse so much. I cry when I think of that betrayal. I can still feel the coffee cup in my hands, I was eating when we found out. I had just gotten back from the doctor and was given my diagnosis of endometriosis and polycystic ovarian disease, disproving cancer. It was good news and I was reading up on both disorders. I remember the entire room pausing, everyone in the dorm that I stayed in coming in. They already knew. That same weight I felt before when I lost something came, because their faces told me.

I don’t remember those words, I just remember feeling the dark feelings that I always was told were bad, and knowing my mother was wrong. I wanted to die for a few moments, because if i was dead I could be with my horse. I remember something else however, as spectacular as that meadow. The girls, the new girl replacing me on the bed count even, they all gathered around me. No one touched me because I hate touch, and they knew that. Each one just waited for me to respond. I said something but it was lost to me. They said things. We talked. For the first time during an emotional crisis I had someone there.

A lot of someones. I didn’t have to deal with it alone. I have had to deal with most everything alone in life. From leaving that facility on through meeting M, I was very alone. Without Gator I would never have known I didn’t have to be. That was the final lesson of many he taught me. Gator did not accept just anyone, he was sent to the facility for care but was never supposed to meet with any people. They were assessing him to see if he merited saving. I gave him another year of life.

His life was brutal. He was six years old when they put him down. A part of me always felt he needed a trial, after all it was self defense. Still, as an adult I understand that he hurt a lot of people, and the only reason he lived was dumb luck. If I had been five minutes earlier? He would never have met me. I wish I could have seen his eyes, I wish he could have seen mine. I dislike eye contact, it makes me want to vomit on my good days but you learn a lot from eyes.

I wonder if he ever meant to hurt anyone. I wonder if he knew he hurt the man who hurt him. See, Gator was considered dangerous because he stomped his abuser half to death. I found that out after I was already on his back for the first time, and I remember thinking, “I wish you could do that to my dad horsie.” Sometimes, in my dreams I ride off on Gator to escape the villains. Every dream has villains again. I only had a few months where there was time for tea with Batman. I don’t have a batmobile, I don’t have a jet plane. I have a horse.

This is what I think of when I think of lost freedom. It isn’t needing a caregiver, it isn’t the use of my legs or being able to walk to the toilet without pain and concentration. It isn’t being hungry. Those are all things that have always been there. The lost freedoms were his not mine. Gator gave me his freedom.

I am sure it could be a story in a movie somewhere, a little girl and her horse. Gator was the first time I felt grown up. I was trusted with his life, and he trusted me before the humans. He wasn’t the only horse I rode there, I was attatched to another who also died in my time there, but Gator is the one that taught me how to run.

Freedom isn’t running away from the things that hurt you. Freedom isn’t being able to do whatever you want. Freedom is having a moment to be truly alive. You do not have to be with people, you do not have to be alone. You just have to be. Every day that I am alive and I am not in an abusive situation, I am free.

Privileged

We live in a world of priviledge. White, Male, Able bodied, and sexual are merely a few. My awareness of my disability became a journey into the cryptic world of truth. This is a part of what has lead me to become a reporter for a local paper. The staff understand that due to my limitations I cannot always “do it” but in turn I understand they have questions about who I am. My questioning mind seeks information out, and I never stop analyzing. This means I also have some very high standards for my social interactions with people. I know what I like, and screw you if you cannot maintain a consistent approach.

Having a diverse friend base, this does at times cause internal friction though I have only told the people I am rejecting to go away. I resort to the screw you if I cannot get through to them with the concept that I am not their friend. This as an adult has occurred with two people repeatedly. Today I told my fiance about a woman, Cynthia McKinney who was kidnapped in a foreign country. He hadn’t heard about this. I admit since we rarely watch the TV this isn’t a surprising factor, though when I mentioned that not many others had, excluding the twitter users and bloggers none bothered to talk about her capture, he was floored.  He then said the most wonderful thing, for it filled my heart with joy that I live with a man who is aware of his privilege. “It’s disgusting. We have these rules, that allow people to do that crap and feel better. It’s a band aid over a slit throat that’s dirty, old, and infected. Sure, we think we’re fine but our body is dying.”

Our body is dying. I think on privilege often. Neither of us can ignore it. As a disabled woman, I run into privilege daily. If I leave the house it is there. Yesterday, I was told just how convenient my wheelchair is because it has a sunshade. In my brand new effort to not be Super Cripple, I said, “Absolutely, I only had to break my spine, become homeless, and develop an allergy to the sun in order to have this convenience. Want me to help you get one? I am sure I can find some way for you to become disabled.” I said it with a smile. The cold knife of sarcasm caused the cashier to falter, she looked down, and then I was invisible. She handed MY change to my fiance. He tried to correct her and pointed to me but she just set it down.

i made a choice to use the cutting words, yet this is not the first time that this same cashier has said this. She doesn’t seem to remember that she has done it, and I don’t need to be exposed to her ignorance each time. My fiance and i talked about it before I went home by myself, wanting the sun on my skin and knowing that the side walk was safe between the shopping center and the house.

He asked, “Are you okay?”

I replied with a frown, “Yeah, well no. I am so tired of that same behavior. I think I may write the store manager about it, though the other employees also do the same stuff.” Each time we go in, I have someone leaning on my chair, patting my head, and in general am treated like a child. This is a national chain, and my fiance having worked there knows that Walgreens prides itself on how it’s employees are given sensitivity training. With a higher than average rate of ableism in this store, I think the trainer was flawed.  Every time we go in, I am required to educate someone. It is a burden. I usually just need a cool drink to lower my body temperature so that I don’t faint. I may actually just want to get a candy bar. Why am I forced to deal with their ableism? I cannot do so in silence, or it will get worse, but it is exhausting.

He nodded, “Maybe you should offer to retrain them. For a fee.” I laughed but seriously am considering this. I also plan to detail for the management just how much we buy at their establishment. My fiance is lumped into a new category with me. Each time we are out he is given the pitying look by someone, and often has mostly older persons (yes, an entire generation of people oblivious to privilege exists) whisper to him how nice it is that he takes care of the wheelchair woman. Most actually say “Stupid cripple.”

Sometimes I relish his responses, how can I relish the pain and shock his refusal to blend in with other people causes? I think it’s the freedom it feels. I almost feel like I don’t have the right to do this and that is when I start super cripping. It’s a stolen moment of equality, a moment which by all rights is mine, but has been taken from me by the limited acknowledgment of generations before. My favorite response to a person doing this was actually a few days ago.  He was more frustrated than I was, it was July 3rd and we had to get food. Sprite was tucked up in my sun shade and was very miffed that we hadn’t gone home, but without food there would be consequences. All of the local stores were closing early.

I had just cursed someone out (I really said the”f” word) to get her to keep her hands off of me, and it took the threat of bodily harm via the Scooter to get her to step back. I was seething, then my person, my wonderful person comes and gets what we need off of that aisle. He doesn’t know it’s the same woman, as we are walking towards the next section she sidles up to him, I allow this because I am sure she’s about to tell him how evil I am. She says, “It’s so nice you can tolerate that thing.” Thing. Dehumanized in one sentence. He turns a bit red with rage, but she’s about my mother’s age, old enough that hitting her is worse somehow than hitting someone in our age group. He wanted to, it was there. We were both seething with exhausted frustration. “I mean, cripples are such burdens.”

I heard his response though I dropped back. In all honesty and openness I was considering how hard to ram her, and ifI should try to break her hip. I wouldn’t really but at times the visual is so wonderful. Imagination can be a great equalizer. He replied with anger, “She’s not a burden. If anything I am a burden to her. I don’t always pick up after myself, I sometimes expect her to do things she can’t and she does this with grace. She’s not a thing. That’s my wife.” He likes to call me his wife and I really do like it too. “My wife is a real lady, unlike you. She deals with people like you every day and she hasn’t killed any of them yet but she’d be within her rights.” Sometimes I want to and I usually share this with him, to let off the steam. “Another thing, if she’s a thing so are you! You have the privileged of a working body, it isn’t a right. You can be in a wheelchair like that.” Snapping his fingers he then sped up. I zipped past her, and rode beside him with great pride.

We talk about in this house often. There are no children to educate, it is merely something we both see. He has grown, as I have. In fact, he often tries to subvert is priviledge where he can. When he sees someone no matter who they are, having a bad day, he allows them in front of us in line (barring so low energy that this is a danger to my health). He does this to try and brighten their day and does this regardless of gratitude. Most of the time there is a grunt of anger or acknowledgment and that is it. He doesn’t stop. I note most often he does this for women, children, and persons who are most often ignored, allowing the men to wait. I am not sure if this is an expression of privilege but it is also the sort of person I would leave waiting, so if it is it is one we share. He is a joy to watch in the world. I often feel a separateness from most people but not with him.

How many white men who are so privileged to be in their 30s and still have a credit card from their parents usually see their privilege? How many white men usually can see it? In my experience it is the able bodied white man who fears this awareness above all. I know, too, that a requirement for being with the man I love, is this awareness.

I don’t talk about this often, but, some of the exploitation of the disabled that we see includes the cost of being disabled. It is very expensive, especially when the insurance companies don’t want to cover the cost of a wheelchair until you cannot leave your house, and then you still may not qualify for the one you actually need. if you need a bathchair, it is almost impossible to get a prescription for it, where we live. The cost increases as the economy makes money tighter.

What is my fiance doing to try and bring equality to the playing field? He is using his skills with repairing wheelchairs (he has repaired mine when the manufacturer failed) to try and help. He charges cost of parts, because we have to in order to eat, and a loaf of a specific gluten free bread or two dollars per hour, which has so far been used to buy a single loaf of gluten free bread. This fee is even negotiable. It is an expression of privilege that he CAN negotiate yet, it is also something that he wants to do to help people who may “lose their legs” and not be able to get their wheelchair repaired. I live with a man who knows his privilege. Yes, he is still learning about it but, the fact that he is willing to take that journey is by itself a fantastic thing that is the truest show of love he can offer me.

For more reading about privilege, I recommend checking out two places out of the thousands that you could check first. Start with a peak at http://www.womanist-musings.com/ followed up by http://thewhatifgirl.wordpress.com/. Renne, the proprietor of Womanist Musings is a wonderful writer, who has a life long experience with privilege. I find her writing more direct, and often much more clear about what privilege is. She also often reports on news you will not find elsewhere. The What if Girl has recently begun to discover her privilege and is exploring that. On top of this, she is also a fun read. I enjoy both of their blogs daily. You can find further resources at their sites, if you do not enjoy their writing specifically.

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