The Phone

I know that it’s something other people with Autism happen to deal with. The Phone. I sit here staring at it every day. It takes me four hours to make a single phone call. Which of course comes after I plan out my calls sometimes four days in advance. The phone… it feels like an enemy despite the fact that my phone isn’t even a smart phone so it lacks the most basic sentience. Not certain if Smart phones are sentient but my carer’s Blackberry says it’s thinking all the time so I will suppose it’s a very stupid smart phone since it rarely gets past the first thought of the day.

I hate my phone. From the phone bill, which if I was willing to risk being out without a cellphone could be less, on to the talking. The talking is the worst part. Why is it people shout into the phone? I know I am quiet and hard to hear but most of the people I know literally yell into the phone. When I had roommates I started asking one of their guests to go to another room since every time she was on the phone she began to yell. The roommates got louder too but this was usually because our phone was a piece of crap landline, and even I had had to yell into it so I wrote that off.

The phone fills me with foreboding. If I could translate that feeling into a story the phone would be the killer in one of my gory little trips down violence lane. The phone did it. Not the man, woman or mutant sewer alligator. It was the act of saying “Hello?” The silence at the other end, a crackle that could be breath and then you are dead, in the dial tone of terror.

This is about how it feels to make a call. I know the phone won’t actually kill me but this supposedly innocuous device creates a whole new level of communications challenge. Even texting can be difficult for me if I am tired or if my hands won’t function. Coordination is never a guarantee. Texting is the best part of a phone however, as I know when it is my time to text.

Sometimes waiting to talk on the phone I pull up a clock, so I can watch the second hand. This helps me to feel less like it has been an eternity since the other spoke when it has been a single breath. I am always angry sounding on the phone, but this is because I am focused on hearing you, understanding you, and frankly, knowing when it’s my time to go.

I often hang up on people too early. I don’t get the phone right, which bothers me. I feel self conscious with the phone. I can’t see you. You always sound hostile to me when I can’t see you. Then the phone brings me bad news. Whenever my student loan people call it’s never what I expect. “We approved you for this deferment but the department of education says your doctor isn’t the right kind of doctor.” Yet, they can’t explain why my doctor is not qualified to sign the paper. They don’t even understand what they are saying so I hit the end button before I yell at them for being stupid. Why would you hire someone who cannot understand and explain what is wrong with the papers? I already took care of this but am I to be a mind reader? Am I to infer that they wanted an MD not an Osteopath? They don’t know the difference and I don’t either. Luckily my doctor’s office does and someone else there can and will sign the papers.

The phone. It’s stalking me now. The only useful thing about the phone for me is the alarm clock. I do have internet on my phone but that is merely a back up in case my coping mechanisms fail then I can wait patiently while I poke at the buttons and read something on wikipedia. It’s about staying calm. In that moment the phone is the worst computer ever.

I suspect the advent of the video phone will eventually occur and I wonder if that will be worse or not. What about those six am calls from idiotic office workers who don’t comprehend that I am sleeping? Will they be more awkward since I don’t wear clothing to bed? I think that’s the entire reason why videophones aren’t what we use anyway. The video phone would level the playing field by making certain EVERYONE feels as awkward as I do on the phone.

Advertisements

A Moment in Meow.

I usually start my writing by setting out the images of what I want to write in the title. Sometimes I go back and change it but not really. I can’t put a title on what just happened. A friend of mine hereto after known as the Shoe Goddess and I have been talking. If she wants her name associated with this that’s cool with me but I always want to offer that respect. She and I talked about PTSD recently, and I explained it to her because she asked. She thinks I should write a book and I have been naysaying in my head, I agreed but I haven’t set out to do it but have shied away. I know why. Before I go into the why I will say, I am going to write the book. During the week I am going to outline what I think needs to be covered, and then I will break it into chapters, the same way that I write for my blog. I am also writing a letter to survivors of rape so between the hospital, my body failing to fail the way I am used to, and the usual crap I come pre triggered.

I watched the Temple Grandin Biopic. At first I was angry at Temple, at least that’s what my brain took the feelings as. I even posted on facebook about finding the movie annoying. After about a half an hour I started to understand what had me so upset, at least another layer of it. The Nuerotypicals making the film made it so noisy that I was in pain. It wasn’t the person or the story that had me upset it was the constant noise over noises that they couldn’t hear. It was painful, and I reacted to that pain with anger. I find I have a lot in common with Miss Grandin, which startled me. It shouldn’t should it? The things in common are all autistic things. I also found myself suddenly burning with anger. I spent a good half an hour having a melt down after the credits rolled. It went like this. Credits roll, pills, go to bed stand beside it and start to scream because I can’t take it anymore and a car just went by with loud music which made Sprite run under the bed.

I tried to just go to bed but then my jaw snapped wrong and I got spit on my pillow. Which lead to more screaming. I hate spit on my pillow, partly because even my own saliva burns me. My tears burn me. My face is very red and sore because I cried. Sprite came to see what was wrong, as she always does when I am not okay and I realized what it is that calms me about her. I had a moment. I also just titled this post. The panic was still there, the pain, the sounds but I could think the instant I buried my hands in her fur and hugged her against me. She wriggled a bit because I was not wearing any clothing and missed the blanket. She dislikes the feeling of flesh. I try to respect that.

I petted her, she purred though because she was not comfortable it wasn’t a lot of purr. Then I clicked, I am stimming when I pet my cat. That’s why when I hurt I want her. When I feel the pain of being, because of all the things I think see and hear? I want her fur. Nymphs fur isn’t the right texture. Sprite is like petting a silken being, her fur is something I have never found a match for. So soft and yet it isn’t so soft it hurts. Sprite is in a word perfect, except for where she is not. She let me cry into her, her fur took the wet away so the burning hurt less.

I feel calm again, I can think again and she is bathing to get rid of the icky tears. I say they are icky, she just says wet. So, the PTSD trigger related to Temple Grandin is love. Love for me, witnessing other people who have things that I want, such as love, can set me off. I haven’t let anyone see me go off for years. I go away instead. Her mother tried. Her aunt tried. She had teachers. She had opportunity. She had education. She was seen as different but equal. I have never had that. That is part of why I am afraid to start writing. There is this moment when I get ready to write even my blog when I see every instance where my writing was destroyed. Even a few moments when I did it to myself because I thought I was bad and undeserving of writing. For me writing is painting a picture but the picture has a thousand little pictures. Each letter and word is a part of the image. When I write I don’t look at my fingers to hunt and peck out the letters but I usually close my eyes and imagine the shapes I want, the sounds, and the sensations.

I look at Sprite, and I look at Nymph who was very frightened but also came and curled up with me. I feel a bit guilty for not noticing her until after the fact though this tends to happen a lot. In the mornings she ends up lost in my blanket because I throw it off and roll thinking she isn’t there but she was tucked up against me all along and was what made the warm spot. I swear, she is warmer than Sprite to the touch and the feel. She weighs at most a pound, and when that pound is not on me completely I don’t pick it up. Then again I have a lot less feeling in my legs since the cramping started.

Medically speaking I am better. The bleeding stopped and the clots are disappearing. I don’t have to wear underwear at least for now. I am not expecting this to last for more than a day but I have blisters from the latex that no one else ever seems to react to in underwear. My skin burns constantly and I am still cramping. There is also a new and constant pain, so I know something is very wrong. This displeases me because I know I am going to have to fight for anyone to take this seriously, well anyone at this facility. I am still waiting on the appointment for the CT scan on my jaw as well. If I cannot lose myself, which does happen without my control, and do so without injury then there is a problem. I spent years mastering how to handle my freak outs. No one had guided me.

So I am jealous of Temple Grandin. It’s a white hot jealousy that is about things we were both born with. Family. I also want education but I cannot get there right now. I don’t learn things in classrooms and the set up for correspondence schooling is all wrong for me. I am going to self educate but suddenly I want a piece of paper. I want to see my name. I want to not have people react with shock when they find out I am not educated. I never liked that, some of these folks immediately presume I failed my way through the educational school brilliantly because I wanted to stun people with my mind. I think those people are a bit stupid and if any read my blog, well I think you are stupid for presuming anyone would want less opportunity just to impress people.

I don’t know if the piece of paper would let me write this book. I only think it is the excuse I am using now because my first thought each time I think on it is, how am I qualified to write about disability and PTSD? How am I qualified? I want to make it clear I know I am qualified and Dr.Not Autistic isn’t. Dr.PTSD is false but I write about it to make life harder isn’t. I know I am probably the most qualified person I know of to sit down and write about these issues, especially because I do so every single day. There are things I don’t publish but if I can write I do. I have given up many things but I will always find a way to get the fluid images into word.

I am still angry that people presume autistics don’t have imagination and that this is a symptom. This was the other thing that overwhelmed me, I connect thoughts in a way that is so similar to the visuals used that I am breathless but I imagine. I imagine constantly. I just don’t imagine like other people. It took imagination for Grandin to see what the cows see. It wasn’t a formulaic thought at all but something special. It takes imagination for me to do anything. I use my different mind to navigate the world. My memory of everything I have ever read, that comes into play when I am advocating.

So no more excuses. I am probably going to have to make Sprite wear a rain coat but even as I am dealing with this latest medical drama, I am going to start this book. A chapter a day, excluding days when I have appointments. Doctor’s appointments screw with my energy and writing does burn it off in the best of ways. There will be another post in a few minutes, I have been procrastinating about a topic as well.

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?

Lessons Learned

Everyone discounts themselves at one time or another. Recently I have faced a lot of self doubt about my public speaking. My wheelchair has given me a renewed terror of public speaking, something I have not felt since my first speech during my years as the Speech and Debate Captain for my high school. This is another reason I went back to Toastmasters. The idea that I of all people could be afraid to give a speech was just mind blowing.

As an autistic I talk too much as it is. I cannot always stop myself, though that is something I am working on. Without treatment for my autism beyond shame, I learned to bottle it up letting my words flow out like the richest cream on stage. Now, I am going to start a new career as a Public Speaker. The difference between what I have done in the realm of Public Speaking and what I am starting tonight is this. I will get paid.

I did not think I was a marketable asset. A part of this is based on what I have heard my entire life. You are too fat, you are too ugly, no one likes pale people, no one likes skinny people, no one likes you. You aren’t worthy, this is the constant message that has been sent not just my way, but towards most children. Any difference becomes devaluing. I was supposed to go to Career Builders tonight to give a speech. I had it ready, polished, and yet two things occured that had me missing the meeting.

My doctor’s appointment ran late. I met my new doctor and obtained my pain medication for the first time in months. I also am going to see a therapist that specializes in Post Traumatic Stress Disorder AND Chronic Pain. My new medication specialist has told me even if this doctor and I do not work out, he will treat me. He didn’t question the validity of my service animal and was understanding about my nearly running him over. I left empowered, yet fighting Reynauds.

It started to snow as we left the office, and we discovered with only 15 minutes to get to the house and drive an hour that I had forgotten my brief case at the house. When we made it home and I climbed up onto my bed to grab it, I just gave in and laid down. Immediately I called the coordinator but, after that I checked my email.

There it was, the reminder that I had signed up for a free online speaking session with Darren LaCroix. It was free, and I hadn’t been so positive I wanted to help Career Builders yet. Key word being yet. So, I clicked the link to the session, locked William out of the room after he crushed my hands and asked my Person to turn up the heat so I could try and stop shivering.

I wouldn’t have given a good speech tonight due to pain, my brain fog, and shaking like a leaf in the wind. I couldn’t remember the opening to my speech and every other word came out as a breathy gasp. I also fell outside of the Comic Book store and my body couldn’t match my brain in fluidity. As I laid down and began to chat with the others in the audience, I woke up inside a bit. I realized a few things as the session wore on. I was left feeling like an asset and not an… well you know.

Some of the information, which I do not want to give in detail here so that you have to go and seek out Darren’s teachings, was pointed and was really just in the form of a question. If you answer it, you have a small portion of what is needed to sell yourself. Other points were broader, metaphorical yet directed.

I am now going to speak for Pay. I will learn how, and the beautiful thing is simply this: I am sellable. I am marketable. It isn’t just being a beautiful redhead, a capable person with a disability, it is also being able to share the information that I have gained through experience and broadening my audience.

I learned a lesson tonight. What is the lesson you have to learn? What will help you find the inner spark? I had lost it this week and now not only is my inner spark found but so is my future goal reset, bigger and brighter than before. I am reaching not for the stars but beyond them, for, I can’t fail. I can only win by trying.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None