Letting Go

There is a new kitten in this house. Like Nymph she was born in April. Unlike Nymph I found her on Ebay. Literally! Her name is not Kashi, she ignored me when I tried, as that name is very unique. I think however it is wise she didn’t choose Kashi. Between Soda and Cereal stealing words from things such as faeries and Sanskrit I would have the most accidental brand name theme. Sylvani tried to answer to Sprite, however she was convinced to try another name. Sylvani, like Sprites and Nymphs are also faeries.

She has adapted well to the household, arriving in a manner that had us both stressed out. Then with about twelve hours of home time she endured a party. It was a fantastic party actually, and I had more fun with hoardes of people in my house than I thought I would. My friends oohed and awed over Meat cake, each one was impressed with the delicious gluten free cake, and yet after it was over I found myself sad. It felt unaccountable so I sat and thought. This was naptime, so I also slept a bit. It was a dreamless sleep.

I realized watching Sylvani peak out at my guests, too shy and still overwhelmed to say hello, reminded me of Nymph when people came over. Nymph would have been this same age but hardly would she have been this size. It became clear to me with in hours of having Sylvani here that Nymph was sick the minute she came into my home. My fears that Sprite gave her the illness faded, though now that is a risk. You see Nymph was abnormally small, so small in fact that I was worried for her. Sylvani is on the small side for her age too, but is almost as big as Sprite. She is far lighter, Sprite is softer.

Nymph purred but her purr was strange. My little purr factories are very good at their jobs, producing purrs nearly twenty four hours a day. Her first hour here, Sylvani purred and napped with me. Nymph did too. Nymph seemed to purr backwards in a way, it is hard to explain but I am left to think that she had other things wrong with her. She was so tiny, so fragile. She was a cat made out of faery dust and love. Too fragile to last in reality.

Sylvani is solid. I have no fears for her future as plagued me constantly with Nymph before I even knew she was ill. I have some residual fears because of the loss of Ny but Sylvani does normal cat things. She knows how to play. Sprite has not had to teach her how. She knows how to jump, though she can’t quite make the food counter. She likes to headbutt my ankles and stretch up to touch me. Her beautiful eyes are bright and shiny and she is curious.

Nymph wasn’t all that curious. Sprite literally taught her to pounce and play. Sylvani is creating her own methods of play with the existing toys. Did you know a laserpointer needs no human? She has been flinging it and pouncing it. She found the truest method of dot defeat.

I talked with M about this for a while, and he said nothing much but did comfort me. There were no words of wisdom needed beyond, “You were afraid to love Sprite, you were afraid to Love Ny, but you don’t seem to hold any fears for Sylvani.” My fear for Sprite was that I would be homeless and could not feed her. This came to pass, though not at all in the expected manner. My fear for Nymph came to pass. It seems my subconscious does a very good job of creating reasonable fears.

I could not see Nymph as an adult cat. Sylvani being nearly identical to Sprite with the exception of the angular nature of her eyes may help but I can see them together in a fear years, Sylvani coming with me as a service animal. I could see Nymph as one but her passivity worried me too at times for a service animal is not always passive with their person, at least with my method of training. Service animals are a balance between proactive and passive.

I find myself no longer so worried that I had failed Nymph in some invisible way that only I was aware of. I find myself mourning her still but not as much. Sylvani is healthy. She is not so small that I worry about her dying because of the surgery to have her spayed or nuetered. She’s a girl so whichever applies. In fact she has managed to kick Sprite out of the sunny spot, without so much as a hiss.

Sylvani and Sprite are most likely related with in a generation. Either Sylvani is Sprite’s Niece or Sprite’s mother lived a long time while producing offspring. This is based on more than their looks. Sprite spent a time in the same Shelter that I found Sylvani on. Via Ebay yet still a shelter. Sprite was found in a similar fashion by said shelter. Both cats were adopted just after being put on the short list for euthanasia. They have similar dispositions so far, though Sprite has shown far more meanness in her life time. That cruelty to people was survival. She was the least likely to find a home, Sylvani’s issue with homes was age discrimination. Too old and too young at the same time.

So I am taking a breath, and I am letting go. I cannot hold on to Nymph out of regrets and sorrows that do not belong. She got what she came for here, and she gave me something I needed too. It was the same thing. Love. Nymph reminded me to love myself. It isn’t the inspirational cat with a disability story, for there was no point of her being ill and suffering that was inspiring. It was simply the soft way she walked through life. She didn’t let her pain stop her from being the gentle soul she was. Knowing how much she hurt all the time makes me sad but, I hear that is true about people when they realize I was literally born in pain. It makes them sad.

I have another post about my mother that will come out soon but for now I am going to watch the cats ruin the rest of the marshmallows. They started this during my nap last night, but apparently Marshmallows are delicious to both of them. Sprite has a history with them, but she prefers the minis. Sylvani adores the big ones. She has flung them, turned them into pillows, and her face when she first bit into one was priceless. I was there for the first taste. It took her a while to decide that the flavor was great! It’s time to turn on some lights and open the curtains and have a day. A day of cat play!

Jaw Dislocation and Lockdown

I feel a bit like I did the times I had survived a life attempt that was single use, the pain is everywhere. It started last night with a yaw, and when I closed my jaw I heard a deafening snap. My ears STILL hurt. One side of my jaw had dislocated. I tried to just reopen and adjust, as I’ve had minor versions of this before, it got worse. I cried. I panicked. Sprite couldn’t fix it and she made me take an anti inflammitory for swelling. She then tucked me into bed, well after I panicked and played LEGO Batman for five hours trying to not think so I would sleep. (That adds grogginess in there to my morning blah.)

My pill supply isn’t that diverse. I have my morphine, I have an older anti inflammatory that is a lot like Ibuprofen but more potent for my system, an allergy pill that was supposed to make me sleep but does make me breathe better, and periodically antibiotics for me to use if an infection is too big for my body. I try to never ever take the last one.

The morphine is for my constant pain. I did find a way to take it last night despite my jaw being unable to move. The anti inflammitory is explicitly NOT for daily use, because it can make me really sick, not where I feel it but where my liver and heart go and try and take a vacation. One pill as needed however has proven to avoid the palpitations and increase in liver function test worry.

That pill was a challenge to take. I had to find a way to get a pill that under normal circumstances my teeth scrape over into a nonexistant space. For anyone with Ehlers-Danlos or for some reason you DO dislocate your jaw (it really hurts, most of my dislocations just feel numb) the gap behind your molars is where you need to shove the pills. You work your fingers under the flap of skim between your lips (inside of your cheek) and feel along until you find the space. Yes, this hurts, and yes it’s okay to cry. In doing so you can also feel your jaw joint, and that can tell you how the dislocation is working. I also felt along the outside. My left jaw flange had snapped onto the inside instead of the outside of where it should be.

You can probably feel the difference through your cheeks as well. This morning, well nearly 1 o clock, Sprite woke me up and pushed on my face my jaw snapped down and went where it goes. It hurt. She then clung to me for a while and I made the effort to get up. I didn’t get to eat last night because I am not filtering liquids through my teeth if this can be fixed. I slept rather well, but my dreams were of circuses and pain. I was the cat woman, a feline human hybrid who’se sensuality and flexibility would tantalize your senses.

My entire body feels the effects of the jaw dislocation. My back hurts more because I couldn’t get food, I think that is the root cause. What is funny is, the change in diet until today has already been clearly a good one. I feel so good, and my pain meds are already starting to work instead of fighting through the crap in my system. Yay fat!

I realized something however as I am taking a bite of strawberry, my jaw clicking away. It always does that. When I go to the dentist (long over due) they always dislocate my jaw to fit their tools in. My mouth is small, my jaw is abnormal. I have to use the kid sized x ray sheets or they just don’t fit. Though my muscles are sore, this tiny opening really IS it.

This contributes to how little I eat. I don’t eat much, just a wad of meat and cheese, and some fruit every day. Each meal is about the size of my fist. I’d hazard a guess and say I eat about 1300 calories. I should do the math sometime. The reason the number is so low is because my body won’t move. It doesn’t need more fuel, and if it does then I eat more. In between meals I do graze on fruits, like right now to amp my system up while I consider the meat portion of my day I am eating strawberries. The packing is worth a laugh, it says limited edition. These are the last strawberries in the entire world.

I know another reason why vegetables aren’t compatible with my system. A lot of the foods I am allergic to require chewing rather than tearing. I am a carnivore with a fruit addiction. Cats eat grass, I eat berries. I tear the berries and swallow the chunks whole. I know from watching other people this is not how most eat. This is how my jaw works, I adapted. I don’t chew gum, I don’t eat chewy food. If it’s chewy for my entire life I have spat it back out. If in public I do so as discretely as I can (hello Napkin) but I won’t eat chewy food.

Some of my family may say I have chewed gum and I chew a bit, but I don’t do a hundred bites of mush, I do bite, if it’s too big, bite, and usually then swallow. I chewed gum as a kid and my entire face would swell up from the effort of holding my jaw up. I also don’t ever have my teeth perfectly closed, my jaw hangs more or less. I never noticed it before.

I admit, for a few moments I wondered if I was wrong about being up to date on my Tetanus shot, what with the cut and the fire and the exposure? This is my normal. I just regret that Sprite was upset and afraid after she fixed my jaw. I did consider going to the ER, but, I couldn’t get there without an ambulence nor could I get home after. I decided if I couldn’t eat this morning then I would go. Hurrah for spectacularly talented kitties with magic paws.

Someday I shall do a list of the many times Sprite has saved my life, It is long and every day pretty much there is something that could qualify. I don’t know what I would do without her. My ears are giving her a ringing endorsement.

Sprite

I decided Sprite deserves an honor, as she always goes above and beyond what is expected of her. She has thusly been nominated for the life time service award (Screw the cat award, she has given a life time of service) with the ASPCA. In my lifetime of trials, the last five years have been better because of her presence. I would be very literally dead without her so many times over. Feel free to nominate her over and over if you want, or some other fantastic animal in your life!

Flame On! (Trigger and Mushiness warning)

Last night I had a meltdown. I haven’t lost control of my emotions or had no logical response in a very long time. A decade? Maybe more. Last night, my nightmares came true. This happens rather often, I presume it is because my fears are actually reasonable. The place I live had a fire. My home was on fire. I am still shaking as a result, but my mind is clear.

A man i had never seen before came to my home, pounded on the door, and told me there was fire and to get out. I turned and grabbed Sprite, and we went outside. My panic was instant. Where do I go? Is it close enough I can go? How far can I make it? Where is the fire? I had no answers, and no shoes. Sprite had no harness or leash and nestled on my shoulders to balance me. This is how I get things done in the house, so this wasn’t out of the norm.

I moved for the office, while calling the apartment manager. I could hear the fire engines coming, someone else had called in. I did consider it but, I had to work on the presumption that my being notified to get out meant they were coming. It was the lat bit of logic I had for a while. I made it rather far, I used the fence and held myself up creeping along. I was the only one outside when the fire went from small to OH MAH FRIGGING GODS THERE IS A GIANT FIRE OH GOD.

I saw it, in a washing machine in the laundry room. There are apartments all around this room, of course. The door was closed, the fire department had to smash it to get into it. They weren’t there yet though, and as the flames went Fwoosh and started eating the building, not just the laundry, I began to cry. The tears were wet, and painful because of my allergy to water. My reaction ranges from full body pain (minimal( to blisters. It was just pain. I back tracked away from the flames and was stuck. I couldn’t be sure home was safe, a sensation that made my panic worse, and I couldn’t get people to answer. I stopped calling folks because I was having trouble breathing. Athsma + Smoke * tears= Cough cough cough.

This is when things get interesting. My neighbors all respect me, every time there is a need they perceive this is shown. There is a strong sense of community with in the hallowed complex. There is also a fear of outsiders, but if you pay rent you are automatically accepted. As people arrived, I did my best to retain the little shred of calm that I thought I had, it was not there. I still suggested that they wake up the manager, it was about eight at night. A lot of people go to bed around then.

The fire department stayed near the fire, and I stayed on the fence. Literally. I watched as they quickly contained the fire, then got it out. The flames were no longer visible by the time we got the manager up. The fire department was more than efficient. In movies and TV they are never that quick and to the point. I know that is to play out the drama but, it really doesn’t credit the fire fighters.

Sprite only tried to escape once, and it was the moment I wanted to. It’s natural to go away from fire. When the fire doubled in size in that split second, she started to bolt. Started. She stopped herself. I want to give her an award, a medal, a treat, and a golden kitty bed that she would never ever use because she was quiet, composed, and she did her job when the other service animals in the complex could not.

A part of my melt down was the pain level I was facing. Standing for more than thirty seconds has me on the edge of my pain tolerance. Past that and we’re entering territory where my systems stop functioning bodily. Circulation cuts down enough that I was blue again. My hands are still a bit oddly colored, it will take time for my body to catch up to itself. The second issue is breathing. The injury to my back spasms and it can paralyze my diaphragm. This is scary when I am not facing fire.

A secondary part was the sounds. Fire is loud, the fire department HAS to be loud. Sirens alone make me want to scream and cry. Even the far away ones. There was banging, hissing, shattering, smashing wooshing sounds. There was also a high level of fear, and fear can be contagious.

My neighbors supported me, for a few moments literally, and then once we could go inside I had help so that if I fell it wasn’t as bad. Then, for the next few hours until the fire department went away, I was checked on by every single person who could do so. Further more, the person alerting people to fire was making certain to tell the people who would be slowest to get out first. It was an act that put him in potential danger and was unselfish even if my not knowing him scared me.

There are rumors of arson today, but I am hoping for either an electrical cause or a cigarette butt left smouldering. a lot of people smoke here, and an electrical issue means that no one purposefully set the building on fire. I don’t want to suspect my neighbors of wickedness, when every single one of them is wonderful. I like them all. Not everyone here gets along with one another but I can talk to every single one of them.

Everyone in my complex has a form of disability, from mobility on to cognitive challenges. Everyone has a different way of speaking and yet everyone here is supportive. I know if I need help, I can ask. I can just scream out for it really, and they will come to my aid. I am left to think on the times when danger came hunting me, and danger did not find me because of my neighbors.

I am safe here, the fire is out and it’s ashes are quickly being covered in snow. I admit I want to see the destruction. I admit my fear of fire is not less but a bit greater. I did not have dreams last night. I was so tired, as I hadn’t slept for a day, that it was beyond me. I am aware that Sprite has not left my side since. She even held it until I was upright this morning, then bolted for the litterbox only to check and see I was following. The cut on my hand (I think it is from the fence, and so did the police) is a little infected but with my immune system that’s fairly normal. If it didn’t get a little pussy I’d worry. It’s not as bad as I expected and my costco gallon of peroxide (it was two bucks!) will get plenty of use.

Sprite and I are fine, no one was hurt. No one lost their shelter or home. I faced my horrid nightmares in reality. Facing fear sucks.

What the Hell! (Trigger Warning)

Today’s trigger warning is brought to you by abusive caregivers! Today I did not want to wake up. Sprite insisted, and in her special way got me upright, into pre-shower jammies. I always put on clean pajamas before I shower, so that I can then put on clean clothes. It feels good this way. So I put on my red satin jammies. I feel like a movie star with this on. I did the morning ritual, pee, meds, considering food, rejecting that idea because it’s too early. I curled up and watched a cartoon on my computer.

It was so late and my internal clock went “Ding, caregiver is late.” I looked at the clock, she wasn’t just a little late. She was a half an hour late. So I called the office. They normally call if someone calls in, and I requested that they make sure she knows, she calls them BEFORE she is late. They called me back, they gave her a formal warning. This is your job on the line, if you don’t call in next time you get fired.

I don’t have to hear the excuses for why people are late now. I try to not be late, it makes me panic to be late. I do not hold others to the same terror of lateness that I experience. I opened the blanket so I could watch the sky, still planning to shower. This would be three whole days not a week… twice in a row! Improvement. The office and I were on the phone when she walked up, so I told them she was here. Simple. Easy.

She starts giving me the excuses and I cut her off. “I don’t want to hear them. I don’t need to either. Lets just get the work done.” Maybe I said it wrong? I know better than that but she argued about feeding the cat, about feeding me. I pointed out she was over an hour and a half late, and since she never called I couldn’t compensate for that. I have to know she is going to be that late when I am in motion or it’s too late. I save moving sometimes or will save movement energy if I need to. I also tell her that we will be mopping tomorrow…

She storms off, then I hear crashing. I smell bad fumes. I was eating. We don’t clean when I eat because the smells can make me queasy even on the approved stuff. I choke down my food, more crashing. She’s throwing things. I hear water splashing on the floor. She never went out for a broom. My questing mind won’t let it go. I am afraid. Sprite is afraid., Sprite.. afraid? My indicator of when I should be afraid is screaming in terror and is trying to find a safe place to hide.

I stopped doubting myself, and considering my options. I had to look to see what was going on. I used movement energy, I got upright and moved to my room, I paused in the door way, my knees were dislocating so I relocated them. The cracking made her look up. My bathroom was thrashed. No amount of cleaning makes THAT kind of mess. I grabbed my ebook reader, and then went outside. My energy is spent, I am afraid. How do I keep going? My brain stalls a moment. What do I do?

I lean on my fence, letting it hold me up. Today was thankfully good on the ability. So rare are these days when I can move this far without falling. I did not fall. I creep out of my gate when I realize she could see me. I hold my mace at the ready. I am vulnerable, the sun is burning my skin. My neighbors look up. They are gathered as they tend to be and they notice me. I rarely commune with them, but when I do go out I am never in disarray. My hair is always brushed, my feet always shoed. Shoed is a word? If not it is now. I am never in my pajamas. I am never without my scooter.

The agency and I talk, I explain what is happening. I am put on hold and transferred to the man who runs the agency. Robert is a tall black man, he used to play football, and he has always felt safe to me. He has a nice smile, and always seems to understand, even when my brain is tied between pain and panick. I get the words out, “I need you to come remove my caregiver, and get the keys. She can’t be here now.” I explain what I saw and that Sprite is also afraid. I also tell him I am pretending to call my mother, she has no idea I have done this because I am afraid.

He got here in five minutes. I had just made it in, the door left unlocked. The window is still open. Jo has moved to the kitchen, supposedly the bathroom is fixed. I haven’t looked yet. She is smearing the broom around in soapy water. No mop. She doesn’t grab the mop until Robert is here. My knight in shining armor. Damned damsel in distress. I hate needing a rescue. I signal for him to enter when I see him. He steps over the puddle that is my entry way, and her mood shifts. She stops glaring at me when she sees him there, and grabs the mop. We let her finish “mopping” though my floor has brown streaks in it now. It’s dirtier. Cat poop litter streaks? That’s the level of ick that is in the bathroom. That is why I keep the germs seperate. Different broom, different mop. My kitchen floor is coated in grime. It scares me.

He didn’t tell her I called. I didn’t have to talk until I was ready. Robert noted Sprite, still screaming. She calmed some when he entered. Sprite likes him too. She moves and sits beside him. She keeps growling and muttering at Jo. I get the keys back. Robert and I talk. “You should never be afraid of your caregiver. You did the right thing.” I explain, sometimes I am afraid of everything and everyone and I can’t always tell if it is reasonable fear. Sprite tells me. He points out that Sprite calmed down the moment the door closed behind her.

Sprite is asleep. I have been calling people. I was on the phone with someone, I also got a few calls while in the moment of mess. I also texted two people before I realized it wasn’t PTSD and autistic overload. My body hurts. My body doesn’t just hurt but my mind too. The switch between calm and rage was so sudden. I flashed back. My terror was real for the moment. It wasn’t too much it just was. The agency respects me as a person and knew.

I called my mother, and told her that I had to use her as an excuse. She pointed out people DO argue with their parents, so it was a good excuse and to use it again if I have to. We talked. There was no anger. There was no fear. I talked to My Beth, my sweet sister. She asked why I was so out of it. I told her, we talked about the mundane. My Beth is almost an adult now. I know I should not call her mine but she is mine in a way. My memories. My sister. My Beth. She was tired, and yet she made sure to talk to me a bit. We didn’t talk too long, they are moving cars today so she had to go help winch something. My mom called back after they were done winching. She was glad I trusted her enough to use the excuse.

The reason that is trust is, my caregivers before who were not giving care but abuse have called to verify my excuses. I am also afraid of using an excuse with someone who could be hurt. It takes trust to let someone be your excuse. It takes trust. I am trying. She is trying.

Still… what the hell happened? I can’t follow the line in mind. A half an hour of abuse happened. The why escapes me as it always does. I can handle the cursing, I can handle someone being mad. I cannot handle the flinging of things. I have to pee now so I will see how bad the bathroom is. The floors should be dry now. It’s been an hour. Right now Jo is finding out she no longer works for the agency.

I am always afraid that I will be told I cannot have a caregiver again when this happens. I already know I have a temporary person coming in and that the agency doesn’t hold this against me. They hold this sort of action against the caregiver. I am known to be a rather laid back person (on the outside, my head is not so laid back as you my readers know). I tend to roll with the little challenges, I try to work things out.

“You should never be afraid of your caregiver.” I am going to try and remember that. My little fear and trepidation, I will try to let them go. I am not afraid of anyone at the agency, my neighbors, and I am working on my fear of my mother. I felt safer outside of my house today. Maybe this is in and of itself a form of progress?

Victory!

Today there was a great Victory. Not just for me but for others with animals that are their helpmates. Service animals have always been controversial with in the doctor’s office. I have had to change doctors a few times given the responses, some places just refuse to accommodate your needs and when asked they would rather be reported for an ADA violation than bothering with reasonable accommodation. Today after my appointment I was told I couldn’t bring my service cat back in. I asked to speak to the person who made the decision and pulled out my well worn copy of the law. I realized this copy is the one I used last time a doctor’s office discriminated immediately, there was highlighting on the portions about medical offices.

I asked the why, and I was told something new. This office does allergy shots and the risk of exposure for other patients is a concern. I asked if we could compromise which startled the office manager. It actually made her freeze her eyes wide with shock. Compromise? She asked what I would suggest so using the ADA as an outline I pointed out that I sometimes cannot even get out the door without her, but I do not want others sick. Sprite will wear her most covering outfit when we go in and I will call in advance so I can go straight into the office where I will see my doctor. This was our compromise. This allows me to have my needs met but does not infringe on the rights of others.

I expected a huge battle, but instead I was given victory. I left a copy of the law with the office, and explained what each part meant to the office manager as well. She hadn’t really ever bothered learning the ADA laws and therefore was unaware she had been about to violate my rights. I did remind her ignorance is never a viable reason in the court room, but is instead the fool’s gambit. I said it as nicely as I could of course. Victory, glorious victory. I feel more secure going to the office now, I feel respected, I feel human, and I feel alive.

In other news, I started with my newest caregiver today. The previous person was so great but that partnership is at an end. She has moved on to another client who speaks her language fluently, so her needs are being met. The new caregiver and William are already attached, and she is going to see if she can take him home. William may have a home. She understands his needs, and is willing to make the commitment. All feels right in the world, though it is a bit rainy today. Oh well, it couldn’t be a perfect day… that might be asking just a bit too much!

Oh, and if you want some great audio entertainment… check out Pendant Audio. They do radio shows! I know that not everyone is into this sort of thing… yet their work is really high quality. I am currently catching up on my Earth-P radio listening. The shows are short and make great waiting room time killers for those days when you just can’t read.

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!

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?

Blogging Against Disablism

I have restarted this post twice now. Part of it is my pain clouding my mind and a resistance to taking my pain meds. I have not shaken the habit of taking them only when I cannot stand the pain. This has left me fighting off a meanness that the pain brings up. I don’t even feel it at first, but, then I realize I am harboring a great deal of anger. Once I accept that I can take my pain and that it is alright to take the little pill that lets me do more than just deal with it, I can resume living.

I see this as my truest handicap. I am at risk of pushing people away because I fear being addicted to a drug. I am dependant on the morphine, but not addicted. The dependency is my need to actually have a life. I am starting a business, I am following my dreams which I had presumed dead and lost to me for years. I am also using my handicap to my advantage.

I listened to a speaker last night who came to the United States from China. She has not shed her accent, nor should she. In her speech she explained the prejudices she faces as a result of sounding foreign in the united states. This racism that she deals with overlaps ableism. People look at a disabled woman and see her as stupid, inferior. People hear her and presume she is stupid, inferior. They presume that neither set of people has the capability to do brilliant things. We are raised with this belief system. We are told even if not directly by our parents, by the world we live in which segregates the special children, or forces students to take English as a Second Language courses regardless of need based not on their actual language but on their race.

My most recent example of a person using my disability as an excuse to other me comes from the grocery store. I went in with my Person to pick up some items for a road trip, with a client. I must protect myself from allergens and that was the solution. Sprite was riding behind me, tucked under the sunshade, and hiding behind my body. A woman came up, I am leaving out a description of her because when I write it, I other her. That is not acceptable either. She tried to pet Sprite. I didn’t bother explaining anything to her, I said in a very soft voice, meant to be calm, “Please go away.” She exploded. “HOW DARE YOU!” She got in my face, and I dropped the softness, but stayed polite. “Please go away,” She snarled, “You aren’t doing anything and you shouldn’t have a pet in the store.” I replied. “Please go away. I am doing my shopping and I am not here to befriend you, talk about your pets, nor am I breaking any laws. I do not wish to discuss this matter with you and have been polite thus far, despite your yelling and harassment.” I then floored it, my chair whipping around the corner and continued my shopping. Ten minutes later I hear the sound of my Person being pushed. His grunt of pain reaches me just before this woman is in my face again, “YOU DON’T HAVE THE RIGHT TO BE RUDE TO ME!” That was when I stopped playing nice. I let myself snarl right back, though I did not yell, “Really? Assaulting someone who is not involved in our discussion is rude, trying to invade my space is rude, yelling at me is rude, and showing your own inability to grasp the rights of others is beyond rude. Get out of my way, I don’t really care what you want out of me I am not here for your enjoyment. If you bother me again I will call security.” She flounced away, and I finished my shopping.

As we left, the store manager who had the law explained to her as we entered was discussing the incident with this shopper. She had gone to the manager to have me thrown out. Instead she was told this, “I am sorry ma’am but you have no right to touch her, her wheelchair, or her service animal. The law protects her rights to shop here in saftey, as it does yours.” The woman replied , “She’s just a cripple, she doesn’t have any rights.” The manager was openly angry at this, which surprised me since she’d been a bit of a hard case about it all before. I left then, to the sound of, “She has just as many rights as you do, and if you continue to behave in this manner I will have to have you removed from my store.” The woman then threw herself on the ground and had a tantrum like a toddler.

I learned something from this, that was the point of sharing it. I learned that every person I edcuate becomes an asset. I did not feel this woman could be educated, nor did I feel prepred to try and spoon feed her the information. The burden of fuctioning with a disability is fighting for my rights. I use my disability as a tool to be under estimated. The woman underestimated the ability of not just myself but of others to actually see the humanity with in my body. She under estimated the ability of people to actually listen. I do at times too.

The secret to blogging against disablism? Is to do it whenever you write. The secret to teaching aout disablism? Is to live.

I know this post isn’t as wonderful as I wanted, I am still distracted and out of it. I am not feeling myself. I hope it does encapsulate an idea. By living and not giving up our dreams we fight ableism/disablism. By having lives we fight against disablism. I am partly distracted byt a disappointment with Obama and his failure to sign the Community Choice Act. I am disappointed with his inability to see the human rights that lie at the end of his pen. There is still time, but, his administration has openly stated that there is no reason for him to actually make the changes that free people from being forced into Nursing homes.

Beyond blogging against disablism, I call you to act. Go out into the world, be seen. Educate via your existence.

To read more about Blogging Against Disablism Day, please follow this link.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None