The Return of the Ghost I Was

I have haunted this blog since I stopped posting. Every day my fingers hovered over the keys but I couldn’t write without reprisals and my life being endangered. My voice was silenced. I became an echoing refrain in my own mind. I would write the words in my head and try to put away the desire. This was true of even my fiction work. I couldn’t publish anything under my name without my exhusband trying to murder me.

His stalking me is well documented in parts of this blog, even if most of those posts were hidden as I learned safety. I have had immense support from you, and I know some of you I couldn’t contact worried. Well, Textual Fury is back because my exhusband is dead. I do have mixed feelings but I am finding that the sad ones are for me. No one who knew thought to contact me and go “Yeah he is dead.” Which I can understand. That would require them to not be enabling his abuse, it would require them to not blame me. He blamed me, and on his last attempt on my life made it perfectly clear that I had to die so he could commit suicide.

I am obviously not dead.

In the last while I tried to blog under new names, I tried to push through. It didn’t work. I was a mute not just by choice but out of an instinct for self preservation. I have approved all pending comments, including his threatening one that wasn’t deleted. Its there for posterity. A permanent (as permanent as anything is on the internet) reminder of my survival. He died. I lived. I never expected to out last him. His body was healthy. Mine? Its MY body, with its well documented fragility, constant illness and general shorter than average life expectancy.

I no longer have to haunt my litany spot. I can simply write. Hello again, old friends.

 

Some of my adventures in the last while? Two car accidents, internal bleeding not yet resolved but not necessarily life threatening (its been around for a while now, and I actually feel pretty good despite that), Sprite needed surgery and nearly died on me from a mega abscess, I started collating my poems into a book, my art will be a part of an exhibition in Australia, The Dark Knight Rises was pretty danged awesome, my monster high collection is great and brings me joy, and my shy cat Sylvani is mostly a normal cat who jumps like popped corn. I even have a great carer. Not a good one, not a failgiver. A GREAT caregiver.

In short even before I knew he was dead my life had reached a critical point of happiness which I had once imagined as a child. My life is nothing like the actual imagined life, but I think it is far better. Sure it would be great to have my own pony and dogsled team (yes both on one sled) but I sit in my humble home with what feels like the world at my feet. I do not promise regular blogs but the turmoil of the world effects me. There is so much in this world that needs to be observed. So much to be experienced and I cannot NOT write.

The Cliche of Anger

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

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

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

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

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

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

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

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

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

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.

“Happy” Anniversary (Trigger Warning)

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

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

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

Measles, Mumps, and Rubella

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

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

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

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

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

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

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

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

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?

I live!

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

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

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

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

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

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

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

It is spring and SNOWING!

Contentment

I just got in from another Toastmaster’s meeting. Tomorrow I am going to lead a meeting, and I am looking forward to it. Right now however I am relaxing after two days where I pushed myself a bit too far. I took three naps today, just to make it through to the end. I do love being able to nap. I am watching one of the few reality shows I enjoy. “Make me a Supermodel.” It fills me with nostalgia, and it actually entertains me.

I used to model. Not much, but, I have experience and I like to see the real talent on this show. I know, it’s not the original but this one has somethings that are unique. Just try it if you want. This was just a great day. I woke up with both the cats snuggling me with every nap, Sprite was willing to work but I made her stay home. She wanted to be cuddled, and I couldn’t cuddle her and give a speech that is similar to the essay 30 Seconds. It wouldn’t mesh well with what I needed to feel.

The evaluator’s comments are sticking with me in a good way. I also found out that I have a super power. I have super hearing. I went to the audiologist. My moderate tones, such as where people speak, are low but still with in the normal range. The super bit comes with the high pitched sounds. I can hear things most people can’t and it hurts. It turns out I am not crazy.

The doctor and I were both surprised to find I don’t have hearing loss, that the hearing issues are mostly caused by hearing every little squeak and sound. I am not sure if this is partly due to autism or if it is a side effect of the continuous and untreated ear infections. I will get my hearing tested annually as recommended but again, another bit of delicious goodness in the fact that I can hear just right. It might feel off but, I’d rather hear too much than too little.

I am posting what feels like frivolity to me because I want there to be valleys between the dramatic writing and pain that I share with you. I want every reader to share with me the good as well as the bad. It is a basic bit of writing, and as my life progresses there is so much good. I have a man in my life who makes me happy, just by being there. I have two loving and soft animals who like to steal the covers. I have dreams. Can anything be more wonderful? I am sure it can but it is fathomless to me right now.

See you tomorrow after Toastmasters! I will post the better of the two videos, as I am giving the same speech. I hope you can enjoy the postings of my speeches.

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.

Damaged Lives (Trigger Warning)

After the end of this paragraph is an unedited account of my Death. This post contains a Trigger Warning even for those without PTSD. There are graphic descriptions of rape, violent abuse, and I am sharing the day that has yet to be topped (and hopefully never will be) as my worst day. Comments for this post are closed, due to the difficulty in even writing this out. I also am going to take a small break before posting again. This will likely just mean a single day, so check back on Tuesday.   One final note. This is the set of memories that when remembered caused my first experience with being devalued and victim blamed.

This last addendum belongs before the break in my opinion so, here it goes! The DA when the report was filed admitted to me and my guardians that due to the legal wording the Statute of limitations was in effect, and he could arrest and prosecute my father but because I had a history of PTSD he didn’t believe it was worth his time to try and that I was worthy of justice. The Worthy of Justice bit is his. It was my fault for being traumatized. I took this to mean I deserved the abuse. His choice to devalue me as a person and a victim nearly killed me. What was the point of living in this world if there was no justice? It had been hard enough to say something about this to a man, to admit that I was a dirty slut as I saw myself, then to be told my attempt to do what everyone says is the right thing, all the TV adds, all of the adults around me, and even  he himself pushing into my head that I had to tell when someone hurt me… to do their right thing and be told I was not worthy of the actual right thing damaged me just as much.

I have nightmares of that choice too. Even writing about it I feel the emptiness and pain of rejection. The only reason I did not give up? My roommate in the facility told me she would kill my father for me if she ever had the chance. We made a secret pact to kill our abusers.                                        Continue reading

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