Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

Confessions and Denial

I have a confession to make. I have been in denial about the extent of my back injury. This was partly to survive, but mainly out of fear. What does a spinal cord injury mean? To me it was this frightening set of words that meant I would never do anything again. I have already proven to myself that this is not true, and finally I needed to know. What exactly happened when my spine began to fall apart? What happens as the damage is furthered? Why am I not supposed to exercise? Why do I keep having palpitations and trouble breathing but my heart seems fine? The last one is what made me start learning. Four years of denial, have ended. The answers are frightening but, empowering.

I found this nifty tool, a spinal cord map! This was the first step towards opening my mind to the information. The map gives a general break down of what happens when the zones are injured. My Spinal Cord Injury is overlapping two of the zones, and knowing now what I do, I can understand all of the above. T-12 and L-1 are both damaged, broken, and cutting into my spinal cord. My sacral region is also damaged, though to what extend I am not quite sure.

I still have feeling in my legs, most of the time, but I have limited control over them. I can do a bang up zombie impression when I am trying to walk, my arms outstretched for balance, moans escaping me as I fight to hide my pain, jerking and halting as I move slowly forward. Zombies aren’t diseased corpses. They are people trying to walk with damaged spines!

There is another set of broken bones in my back, between my shoulder blades. Eventually, if the spine goes there, I will be paralysed in a different way. Some of this terrifies me. I am supposed to focus on stillness, forgoing excercise because moving allows the gnawing teeth of broken bone to flex, shift, and cut into my spine. It hurts to move anyway, even my hands moving enough to make these words causes pain, a deep rooted ache that feels as if it will  never, ever end. It might not. If it doesn’t am I lucky? That depends on what comes with the ending of my pain. Death? Not so lucky. Paralysis? Not lucky. Healing?  Extremely unlikely, and that would be better than winning the lottery.

I must adapt. I admit openly that adaptation is not a choice, it is the only option. I can risk my life and my health to excercise or I can try to get used to a stillness that is unnatural. It is natural to move, to dance. Watch a small child play, and they are moving, unless in pain. Pain is a rescrictive thing, it constricts us and binds us in ways that our brains cannot always comprehend. That is why I am asking for more help, I need help with food, I cannot always force myself up to get it. I need help to preserve my tattered spinal cord.

In my imagination my spine is like a worn out dress I used to own, it was bright and colorful but eventually it began to wear thin, holes appeared, until one day when giving a speech I lifted my hands and it fell apart. I was thankfully wearing underwear that day but the people watching my speech saw much more of me than intended. I just grabbed my coat and pulled it on, buttoning it, then finished my speech. I no longer have the confidence to fight my body, to risk wearing my spine through. It can’t be tied back together. I cannot move through my life with a tattered spine, pretending nothing is wrong. I must accept it, and adapt.

This is not an act of strength. It is an act of life. I am not exactly sure why, but, I find no inspiration in others who have ‘over come’ their disabilities or adapted. I think it is because the truth is that you die or adapt. That is the exact thing that makes humans what they are. We adapt. We may suffer, we may struggle, but adaptation is not an act of greatness. The acts of greatness come after, with the knowlege gained and what you do with it.

I have admitted many things in my essays and writings here. Now I am admitting that I am afraid. I am afraid to adapt. It means change. I also know that every time I twist, every time I turn, every time I hear loud snaps from my back, this is something I cannot ignore. I already have an appointment in a few weeks with my doctor and I am going to ask for help. I need to see a nuerologist, I need a reassessment of my body. The wheelchair system I have is hurting me. This must be addressed. There is change afoot, and it is unpleasant.

I am admitting too that my mind is dulled often by pills and pain, together, one at a time, seperately. I am not helpless but my body leaves me vulnerable and now so does my mind. I have dreams, I have hopes, but they feel alien. Who am I to dream? Who am I to hope? These are forbidden emotions, just as to dance was forbidden and is once more. The world feels twisted, pulling at me from all sides.

I live in a world of oppression and today it is too big. I am going to write a story in a few moments, for a story telling contest I want to enter. I am going to chase down my dreams, I am going to live, I am going to adapt. I just am not going to give up. I want to. I want to dance, but, if I do I will be paralysed. There are worse things than paralysis despite what people are taught.

A wheelchair is not the end of the world. I just feel that fear anyway. I am in a wheelchair but I am still afraid of it. I am afraid now that I will pass out while using this one, that I will be hurt. This is not the freedom I felt at first, that first taste of being able to go. Now, it is a fear that does not belong. I am afraid too, that when my spine gives I will suffocate. As my spine degrades it effects my ability to breathe. I feel now that I will surely die if I cannot sing. This is silly, of course I can live without music yet I fear it. I once had this fear about my dancing, and although I can dance in my head, I can feel my muscles flexing and moving, I fear that this will not translate through, with music.

These are my confessions. I have been guilty of denial, self harm, and giving in to irrational fear. Apparently I am not super cripple today, just a human. I confess to being just like everyone else who faces adversity and disability, human. I confess that needing to adapt is frightening. I confess too, that I am determined to find a way to get what I want while respecting the needs of my spine.

We are Human

I sit here sharing my words with you. You read them, you feel things. I learn from your comments. I am getting to know someone, near and dear she is to my heart. I will likely never meet her in person, and that makes me cry. I will not spoil the surprise because I am going to write about her in depth later. M and I were talking again. I am feeling those consequences from dancing more than I expected, my hips are doing the lambada on their own, clicking when I breath, dislocating if I exhale. The sky is over cast and yet, there is a ringing in my soul, the clarion call for Justice.

In explaining the suffering of this person, she sky dives, she fights for her rights, and she is willing to share what is left of her life in order to make the lives of those she does not know better, I said something that made me pause. “I am American.S he is Canadian.We are Human.” I will fight for anyone who needs a warrior. This is merely who I am. It is a truth. M is Canadian and American. I think he has a dual citizenship, but neither of us know for certain. He is Canadian American. He is also Human.

It does not matter what country you live in, there are silent victims. There is little a victim can do, when they are trapped in a chair, unable to get up without help. When that help is jerked away, so often it is all that you can do to survive, much less fight for your human rights. My Left Foot, a movie about Christy Brown is on. I am listening to it, while I write. While I cry. We are human. Every one of us. It is not a soft thing, this humanity. It is abrasive, fearful, and yet it is capable of much.

Are there laws to protect these innocent victims? Yes and No. It is not a lack of law, it is a lack of proper enforcement. I might be wrong there, but, this is my American Experience. There are plenty of laws to protect the victims of rape, but you must be a victim first. There are laws to provide limited pallitive care, but you must apply and qualify. Right now, there is a chance to change that in the US. I wonder however, as we extend the amount of people who are free of institution and live at home, are we extending a regulatory process to see to it that these people are not victimized?

I do not know. So, I am going to try and find out. I think a system should be in place, surprise visits, people actually believing it when someone says “She has hurt me.” or “He doesn’t feed me.” We need to change the world. I know people who are trying. I am trying. Is the world listening? Are we seen as more than strange deformed creatures? I hope so.

I am an American. You might not be. You are human. I am human. Spread the word. Humanity isn’t limited to the able bodied white man. Humanity belongs to every homo sapien. So stop acting like we are invisible. I see you. You see me. I am human. She is Human. He is Human. WE ARE HUMAN!

Corned Beef Homelessness

I was humming “The Rising of the Moon,” today and remembering Saint Padraig’s Days past. Part of it was the entire discordance in my body, the rest of it was a mixture of too much green and random facts about Saint Pats. I had seizures all day, starting directly after the TVC Toastmaster’s Meeting began. This left me exhausted, and my mind was not on the evaluation.

I still did my best, but, instead of baseball I wanted to think about the children i used to know. When I was homeless, at the first shelter I was running under the presumption that there was no joy to be had there, no safety, no happiness, no love. So far this had been proven correct, until I woke up on Saint Patrick’s Day Morn. This was about four years ago, I was all alone in the world. What woke me was a soft bundle of skin clinging to me tightly, crying.

The little girl was blind, and could not tell where her mommy was, and I felt nice and safe. So, sitting up I carefully ran a hand down her back and asked her what her mother’s name was. It was an hour before wake up call, and the girl had just gone to the bathroom, but her mommy had left her there, or so she thought. I put my shoes on and forced my body to move. Once I had my footing we walked to the bathroom, through the snow, my coat wrapped around the girl. I was cold, but, she was smaller and I decided she likely needed it more than I did.

I could hear someone calling, “Maggie?” In the darkness, I could not see but I could hear her. “I hear my Mommy!” The relief filled the child and she wanted to run off, but was afraid because this was their first night at the Shelter and she had fallen a few times, trying to find her mother. We made it to the bathroom, over 500 yards from the main building. Her mother was in tears when she saw her child and scooped her up. “I thought you were gone forever.” They said this in unison. I took my coat, her mother had hers, and wrapped myself in it, creeping back to bed.

I tried to go back to sleep but it was too late for extra rest. Still, I reasoned this wouldn’t be a big deal. They often treated women like garbage there, I am certain they still do. This day was different, if you could ignore the fact that the men had a restroom inside the main building and did not have to go outside with wet hair, they even had six toilets instead of just two and theirs was accessible. I couldn’t ignore it but was told if I so much as protested I would be out with no shelter.

When we cleared the floor, set the tables and had our breakfast, a bowl of sugary cereal each, the children came in. They rarely got breakfast, unless someone saved it for them, first come first serve, and children without a home are just as reticent to leave their warm beds as those with. I often saved my cereal for a child, and this morning I presented it to Maggie, after it turned out there was no more food. She recognized my voice and told her mother I was the nice lady who had saved her. I smiled for the first time, since losing my home. For a moment I didn’t hurt so much either. Then my stomach started whining at me, it wasn’t hungry it was just the sheer amount of allergens I had to eat in order to not die. The knife’s edge I walked on had become narrower and more harrowing.

I pulled on the very shirt I wore today, one of the few I managed to salvage. It was my only green at that point. I let my hair down, liking how it felt. I felt pretty again, a first since my back injury and homelessness. I wanted to dance, though I did not trust my legs for that. Then the staff asked for volunteers to run arts and crafts. The adults all grumbled, no one wanted to bother with the kids. I raised my hand. I have this strange reaction to chances to do things, I usually say yes.

There were acrylic paints, glitter glues, glitter, glue, and a lot of paper. I was given the one pair of scissors and we set out to work. Maggie was the first to want to try something, so, I helped her cut out clover and let her smear the glue all over the paper. She was having a blast. I remember her laughter, “It’s gooey!” Her mother watched, but less carefully since I had returned her unharmed without knowing either of them. Another girl came over, then a boy, and they made green paper chains, then, on white paper we painted leprechauns. Soon, the entire building was covered in green.

That smile kept returning too. After the first chain was hung, a few of the men began to pin the decorations, growling out playfully, “We need more green over here.” Smiling as one of the kids ran a decoration over, the smiles started to spread. By the time the annual news cameras came, filming us just to show how great the people who run the place are everyone was smiling. I remember the reporter, a short man with a puce tie, muttering, “Why are they so damned happy? Don’t they know they are homeless?”

As we sat down, a kind man bringing me a plate as I had begun to fall over again I realized why I was happy. I had stopped focusing for one day on my homelessness, and had instead focused on making someone else happy. I wanted to make sure that those kids had a happy day. I wanted to see their smiles. It was cold out, snowing, but inside the warmth of family and friends was found. I also had the first meal that was not going to make me sick since arriving there. Corned Beef with a side of freshly mashed potatoes. There was enough for everyone, a rarity there. I even was allowed seconds on the meat and potatoes.

I hid from the camera, this was helped by the smile that would not abate, I could not stop grinning. After all, the children were laughing, our temporary home felt like a home for once and until it was time to sleep no one fought, there was no need to try to steal food, and we were all content. The next morning there was no green, just the cold snow. There was too little food once more and it all went back to being a gray existence, dull and painful. Except, that I still felt happy.

My happiness was not permanent, yet, my acceptance that I could feel happiness made it easier to exist in a state of contentment. Without that day, I might very well have been too depressed to fight for survival a month later, when I nearly froze to death. That shelter is a special hell, for those in need, for those who no one cares enough about. It is not up to code, safe, and they do not try to make you safe or happy. It was merely a whim that lead to that one day, a kindness so rarely given.

As more and more families lose their homes, they head to shelters just like that one. Today, I remembered my own agony as I fondled a bit of green paint hidden just inside my sleeve, the paint stain is left over from that day. I too considered why I kept the shirt, and I realized despite it being a bit uncomfortable, always too warm , I keep it because this shirt has memories attached. It isn’t just the shade of green that sets my hair afire, smooths my skin, and makes me feel absolutely beautiful. The beauty I feel is instead in the subconscious associations with happiness.

When you have nothing, you still have your soul, your life, and the ability to love.
Happy Saint Padraig’s Day. May the road rise to meet you, your friends and family greet you, and love fill your heart today.

The Rape of Innocence (Trigger Warning)

Literal. I lost my innocence, as defined as physical virginity to my father. It was rape. It was never consensual. Incest is bad. Typing these words is extremely difficult but my day has already been one full of tears, therefore, I am going to go with it. His excuse for rape, his reasoning that made it A-Okay to violate, subjugate, and to hurt me sexually was this. “You look just like my mother.” I was four years old. Today I was triggered. This isn’t an easy thing to admit, and I feel uneasy each time I come across things that remind me of him, and at times my PTSD is triggered by a harmful thing. Today I was already in a bad way due to pain, some of it is residual effects of my abusive childhood.

Some of it comes from feeling violated at having to see another doctor, since my service animal makes me unworthy of another. Some of it comes from this post on Feministing.com. I do not care that this game came from Japan originally. That does not make it better. I do not care that their society has a history of subjugating women, so surely all of their rape fetish bull is perfectly acceptable. Not to me. I want to reach out to the women of the world, for an uprising. It is in this moment that I state I am a feminist, in the definition that states I am pro women’s rights and equality, I am pro disabled equality, and I am pro mental health equality. I want to be healthy, I do not want to feel the edges of Victim burning at me again and again when I skim the internet, go outside, or even sometimes when I try and think of a happy moment. It is always there.

I am not the cause of my own rape. How can I be at fault for it? Yet games like this propagate the victim is at fault mentality. I remember when I turned my neighbor in. He was molesting me during the same period when my father decided to rape his mother allegory. I remember being asked by the prosecutor, at the age of five, if I wore short skirts to turn boys on. I didn’t even know what that meant. I remember, however, the after effects. I rejected my body, myself, and I tried to become a boy.

This attempt at maleness included trying to cut off my breasts when I was thirteen, shaving my head repeatedly (and discovering that my head is very lumpy) as well as rejecting my identity. I could not be Rebekah. I had to change my name. I did, as an adult. I found a name that fill sme with the sensation of security, health, and the desire to be happy. I do not cringe when I hear my name anymore. I never out grew the after effects of being raped. I was repeatedly assaulted through my life, and this was also used to overshadow real medical problems.

When I was eight years old my mother and father sent me away for hypochondria and Bulimia. It took adult hood to realize I never was bulimic. I also have a great deal wrong with me, and none of it is in my head, except what neglect and trauma put there.  All of my current illhealth cannot be attributed to the childhood neglect, but, a majority can. I am an advocate for anyone who needs it because there is so much to choose from. How do I choose between mothers and their need for proper nutrition, childhood health awareness, Celiac Awareness, Rape is Bad Mkay awareness, and the awareness that as a wheelchair user I need a door that is wide enough for me to not scrape through.

I am in tears today from pain, physical and emotional.  I am a woman. I am 24 years ago and it has been 11 years since my father last raped me. I have since seen him and he cowers with fear, he actually pissed himself when he saw me using a walker and fled in terror. I am not someone who causes fear but, I am a survivor. I was a victim and when I tried to say something, when I found out I should, I was denied that right. The district attorney felt that my case was not compelling enough because I was a mere child and had been sent away by my rapist for not being exactly what he wanted. I was denied justice, and I know my assailant is out there.

Knowing he is afraid of me doesn’t take away from being afraid of him. It does not take away from the sensation of the little hope I had being crushed because I wasn’t worthy of the time to take a bad guy off the streets. It doesn’t make it alright.

I hope whoever reads this finds either peace, awareness, and the understanding that if they themselves are a survivor of rape, abuse, or anything at all, that they are worthy. I understand as an adult why so few women report rape, when it is always the Victim’s fault. Eventually I will write more on my experiences with the mental health system as a child. I will write about my diagnosises, and the secrets that I am not sure my biological mother wants shared online. Someday she will google me and will discover that I am not the all accepting child she still perceives me as. I do not take the burdens she places upon me. I leave them behind.

I was about to submit this when I came across this in the comments on Feministing.com, another link. Amazon pulled the english version of the game, though it is still availible elsewhere. I am shaking with relief and rage. How do we protect our children when things like this pervade? What is to stop this from normalizing rape in our world? It might. It might not.

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