An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

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Voices Rising from Silence (PTSD Trigger Warning)

As an advocate for myself and when I can other people I run into a question a lot. “How do you do this?” This question most often comes from my fellow autistics. As someone diagnosed as an adult I find a lot of my experiences without diagnosis mirror the “medical treatments” others on spectrum who were diagnosed have. Child abuse in disguise as therapy in order to teach control reigns the autistic childhood, we learn silence. We learn stillness. We are erased with in our own bodies as much as possible. We are punished for existing. The best autistic parents even do parts of this because there is no voice that they hear, yet, from the autistic community. Our song has just begun.

The autistic culture is one of enforced shame, it is one where we deal with a lot of hate just for being. This is in part due to a lot of hate organisations like Autism Speaks, who sink their budget not into helping people but into quackery, negative ad campaigns and convincing newly minted parents of autistic children that their children are a burden. That their children will never live on their own, get married, have a “real job”, or anything that is valued as productivity. These parents are convinced that there is only pain in the life of the autist. So they create more of that pain, feeding it. I do not deny that a lot of things with autism really suck but I LOVE who I am.

How does one learn to speak? I think this how to might apply to survivors from many types of abuse. It is about regaining the voice. This process is not universal and is a general guideline to what I answer the most often when people ask me how I blog, how I advocate, and how I risk going out of my house being so far from the norm. I think I hide less and less of my abnormality. I celebrate it now, but it is an on going process and journey.  I wish there was a universal answer but here is what I worked out as far as what I do subconsciously and consciously that I can put to words.

1. When I want to be silent out of fear, I speak up and risk the consequences. This to me is the basis of self advocacy. Oppression is born in a culture of fear, so I must not obey the fear that tells me to be quiet. “If you are good and quiet nothing bad will ever happen.” If that was true I would be a far different person, because being “good and quiet” only lead to pain. It leads to secrets. Good and quiet would mean still being with my exhusband, it would mean watching my father murder my step brother with a frying pan, and it would mean condoning every act of rape, malpractice and other harms brought to me by people who tried to take advantage of my selective mutism, of my physical fragility and of my silence. Sometimes it is a small noise, other times it is a roar. Sometimes it is actually words. Sometimes a song. I am not silent. Not anymore.

2. When I am threatened, I do not revert to silence. Making noise leads to punishment. It leads to the threats that come in a variety of forms. I had a medical professional threaten and then withhold my pain medications on more than one occassion, because she did not believe I was not addicted. I suffered. I was then told if I kept speaking up to her boss about these threats and punishments she would have me black listed. I took that threat to her boss and switched doctors. I have a doctor now in the same facility. I wanted to be silent. She is no longer my doctor but treats others, thus I also am in the process of number 3.

3. Do not let the threat harm others. This is a mixed bag. The threatening person may be someone you cannot stop. This protection must never come at a cost you cannot live with. This means do not chase the axe wielding halloween monster, go for more qualified help. It means talking to someone’s boss, documenting issues. This is often what gets me to perform step 1. If the doctor was allowed to bully me with medications I needed and threaten my life that way, she would be allowed to do that to other people who may not be able to endure it, be able to adapt and if someone else spoke up without documentation I had, then I was harming that person. Thus i went to her boss in step two. As you can see these steps are not in order because they are more a mobius strip how to guide for living.

4. Document the threat. Little notes from my exhusband, recording the doctor without her knowledge as it is legal to do in my state, pictures of bruises. Those parents who send their autistic kids to school with hidden cameras and find out that not so shocking to any of us, abusers aer out there ready to harm your vulnerable chiild for being who they are.

The same process applies to why I write. I cannot put on a super hero cape, race about the world and fix it. I must slowly advocate for myself and then when I can on bigger projects.  I cannot advocate for others if I do not come first. i think back to my first few tries at blogging. I threw on a secret identity, I tried to hide who I was. Yes, there were other blogs before Textual Fury caught fire. I stumbled, I struggled with my words out of fear. Then I realized that was what i was trained to do and the rebel that lives in the core of my being took over and I wrote the first post here. As I wrote more and more the tone of my blog changed and I let out the “monster” i feared. It turned out that person is pretty darned cool and I began to push further and further out in the world as myself. I never hide anymore.

So how does someone conditioned their entire life to a culture of silence learn to speak? By doing. The posts I never share, those still happen, the poetry saved on my hard drive instead of published, facebook and talking to friends, gathering with other autistic people. Knowing what I know now those are just little things. It has to be something you want, so you have to stop hiding from the desire to write, to sing, to speak, to shout to be. The thing is? Just wanting to IS enough. When people ask me for help it makes me proud, not of me but of them. I am proud of every single person who takes on the difficult journey of learning to speak for themselves. This is not a challenge exclusive to autistic folks, though the culture of silence caused by shaming and abuse seems to be so prevalent among my people that there are no autists I know without PTSD or that they know. There are no autists without pain, suffering and a knowledge of abuse that is intimate and too close, that I know of… except perhaps those children being born right now. So we are learning to speak so that they do not face the battle of a life where our words are forced back down our throats until we choke on them. That is why I wrote this out. The how to on blogging is the same as other things. Baby steps, do what you can and try to do a little more each time. Cry, laugh, feel happy, feel good, struggle with it. Live.

I think of the others who came before me, for I was hardly the first blogger with autism out there. My brain does not want to write names but I can see faces, words piled up before me that create a beautiful sky and world. I remember the first moment I read something by autism speaks and it broke my heart and filled me with fear. Was I seen as such a monster? Did i deserve the abuse? I was a baby back then, not yet a woman and lost in a world of flying diagnosis where everything seemed to stick. Then I decided to find adults on spectrum too. Now I have loving friends who hold me close, even if it is just as text. Better as text since I can enjoy that. The diagnosis that stuck saved me so I could find out that no, those descriptions of horror are wrong. Even if I had never been able to live on my own, they are wrong. There  should be no shame in having a need. There should be no shame. So i am writing this for the people who inspired this post by speaking,by learning to speak, by asking, and by being.

Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

I AM More Important Than Your History

Random thoughts as I woke up this morning, and began my daily motions crept into my head. I have been thinking about the acecssibility of my city, or the lack there of. The excuse I am given in new buildings is that the sticker on the door should be enough. Some places obviously tried and usually it shows in grand ways. Other places give the excuse that to put a ramp in, or wide enough doors would be destroying the historical importance of the building that their business sits in. I am more important than the history of the world. All people are.

I know that this makes me appear to hate history, yet this is the opposite of truth. My first passion in life was history and I have always loved taking part in reenactments. I am for preservation but not when the preservation includes the history of excluding others based on arbitrary things such as skin color or ability. I suspect that the place I live is far from the only one guilty of such crimes, yet I look at the excuses and they no longer work.

The first time I approached a historical building and there was no ramp, the excuse worked, because then I did not know my rights under the Americans with Disabilities act. The second time I was told this, the excuse did not work but I had no power. Since then I have regularly avoided the section of town that is considered somehow worthy of preservation. Even going along the side walks outside is difficult as the inclines on the “accessible” places are so steep my power chair cannot make it, and coming down the other side of these inclines would likely be an act of suicide. Old Town is lovely, and often has events that are free and meant to gather the entire community. These events only count if you are willing to burn out your chair engine, sink into grass, or sit on the only part of the side walk that you can get to that is safe. The excuse is history.

None of these buildings retains their original purpose. They are all shops selling the same tourist crap. There are a few restaurants but they too are selling the tourist crap. People claim native ancestry and sit out on the side walks, because this is apparently historical too and barricade the way. I have had people get angry at me for asking them to move so I can go past. Then there is the staring. For some reason people react more strongly to my presence in this section of town. The idea that a disabled person may be near these expensive shops, may want to see some old time gun battling, or in general may want to be on the side walk that has curb cuts at BOTH ends (an extreme rarity in this town no matter the section) boggles their minds.

I have found my response finally, for why they need to have access for me and others who are disabled. I am more important than your history. It is not my history if I am prevented from learning about it. It is not a history I can embrace when a store that is selling the same tourist thing as the one next door can have stairs and no entry and their excuse is history. I realized this morning that the lie does not work for a very simple reason.

All of these buildings have restrooms. Every single one has a place to go when your bladder is full, when the tourist trap food gives you a stomach ache, or when you need to check your make up. Every single one. All of these buildings were built without restrooms. Every single one. They were built with out houses in the back, all of which are torn down. If access is less important than poop, you are obviously not thinking straight. If you prize history over poeple, you lose vital lessons about people that history contains. Yes, the stories here are amusing, amazing, and important. So are the people who want to hear them and might not be able to.

So there it is, my reply has been cemented finally. Whenever someone plays the history card in this never ending game of poker for bigots, I have my answer. If you can put in an outhouse, you can put in a ramp. I am more important than your history.

Pumpkin Pie (Trigger Warning)

a cat with silver fur, black stripes, has wide eyes and is being fed a bite of pumpkin pie

Not how thanksgiving looks inside my head

Pumpkin pie, soft, creamy, and since mine is crustless just a wad of soothing and cold chewiness. The scent trickles into my mouth to tease at me, and is the only Thanksgiving day food I can eat without becoming ill. Mashed potatoes are also fine but must be different than the recipes from my family dinners. No gravy, cheese, and almost always something in the food. Turkey, I can barely type the word. I can barely say the word. I will not eat it. I have been forced to by people using that vulnerability against me and I react to it with a mental allergic response. It is not somatic but the PTSD triggers hard and fast.

This is what I expect of Thanksgiving.

Yesterday I remembered something that has given me a sense of relief. Today as I continue to process the revelations I am left staring down the barrel of gender identity issues. I have had gender identity challenges my entire life. They base in my being autistic and as many other autistic women face challenges of being accused of decidedly unfeminine behavior so have I. There is a root with in the numerous and enduring sexual abuse that has dominated my life and was the end all be all of my childhood. From being prostituted to ministers and the supposed holiest people I know at the age of three and raped by my father to the rape at gun point by a high school boy who didn’t seem to understand this was why I stabbed him with a fork at school when he put his hand on my shoulder. I once tried to cut off my breasts to become a boy, and I have never really appreciated my femininity.I am aware there is more to this, including the fact that I am intersexed physically. I have testicles AND ovaries. Maybe if my mother had eaten, I would have been a male child. Maybe not. I do not consider myself to be of one gender in a sense but I am either feeling male or female.

I have spent years keeping this a secret, and in public I might still. Yet I am thinking this doesn’t matter. My carer knows. My best friend knows. My sister of choice knows. I know. To me this is who matters. I dress according to the way I feel, and even my male side is prone to wearing dark red lipstick. It feels sexy. I have fought and clawed my way through life trying to exist, and I have been told repeatedly that girls just don’t fight back. It is a fiction in a bad life time movie that women can ever do damage, we are eternal victims.

It wasn’t JUST the media that sent me this message. Nor was it subtle. It is my nature to fight back when I am in danger. I have very good survival skills. I am fully capable of killing you if you try to kill me. I won’t murder you but I won’t let you murder me. This has been unequivocally a part of who I am and I have wondered if when I was raped for the entirety of Thanksgiving weekend, so Wednesday night on through a Sunday night, when I was beaten and when the fragmented memories didn’t match the normal abuse patterns… did I even try to fight back?

Therapists told me no. If I had tried to fight back then he would have killed me. Except he thought he did and I have very real memories of meeting Osiris the god of the dead in Egyptian Mythology and having him put me back in my body and ordering me to live. I have marks on my chest that match where his hands were. My father wanted me to be dead, and did not try CPR. He thought I was dead. I don’t know about pulse checking and I am very aware that this could be a response to the very serious trauma to my brain from being bludgeoned with a gun, but I was left for dead.

My mother, who a child loves and believes on pretty much anything until Mother proves to be a person. No matter the health of relationship good or bad, Mothers do happen to be humans and thus the teenager occurs. Yes, my mother spent my entire life telling me that we don’t fight back in my family. The men are the abusers and the women in my family are there to be hit. She has said less of this to my baby sister but the message still is there. Women don’t fight back.

I have had mental hospital doctors torture me over my fighting back, I fought them and yet I was not allowed to have fought back against my father when I was alone. My agency was denied as children don’t fight back unless they are penis bearers. My father made it clear that if we fought back we would die but there are other memories of me fighting back. My siblings sometimes declared their hatred of me because my morals got us into a world of literal hurt. Then again they also wanted me to lie and I am still very bad at that.

When I was somewhere between 11-13 and was raped by someone else and I did fight back the police told me they wouldn’t let the boy press charges. I took a bit of rebar to his head, his father’s car, his house and let his dog go (never came back). I was willing to kill him for what he did to me and yet again, the police told me that women just aren’t allowed.

The media does this too. In movies it is extremely rare for a woman to fight back unless she was already a victim with years of self defense, hiding in terror and her abuser finds her and then she either kills him, takes him back and tricks him, or is rescued by the new romance in her life. Not just life time folks but block buster films. It is never with in the intial attack that a woman fights back. In horror movies, the attacks come in waves and it is finally after a breaking point, or the loss of all of the human shields that the female fights back and often still dies. Running away is good, as happens in horror movies with the cliched fall so the bad man can still get you. This is an acceptable reaction and is something I approve of, just don’t trip.

It is the female who is unfeminine in movies that is the villain. Either a caricature of a woman with sexual appetites such as Famke Jansen’s role in a James Bond movie or a woman who is something ugly, othered or is somehow defective. These are our female villains. Any villainous who is beautiful tends to not be acting under her own charms or supposedly it is more scary for a waifish beauty to be bad. Again, by being beautiful she is supposed to subvert the norms of who is acceptable with in a violent situation.

Women become their traumas. This is the other message I have struggled with my entire life. I was reduced not to a bad childhood but this single moment in a trauma filled life. None of my traumas are my identity even if they chipped some of the facets of my personality or left scars on me that changed the outcome of my personal growth to this point. The good moments in my life had just as much impact and I am the result of everything I have thought, read, heard, and learned. Every person I met, every person I did not meet. Every bit of media I have heard. It is not my trauma that makes me who I am. The Brave One, the entire premise of the film, which I linked above for my example, is that the woman is just her trauma.

This is a perception that removes the humanity from She Who Fights Back. You are no longer human but you are Rape. You are not actually a Woman, therefore it’s okay once more for you to be violent. There must be something wrong with you if you are a woman who fights back, this is the pervasive message I have been living with. There have been years I nearly killed myself over the simple fact that I did not fight back. I could not live with the idea that I did not, even as a small child, try to get away.

I remember when I first began to wonder why I didn’t fight back, it was after I was told by a therapist I would be lying if I claimed I had. I sat there quietly for the rest of our session, I was in a mental hospital at the time. The first time. I watched her face and I wondered if she had ever been hurt too, and if she had fought back. She had long plastic nails that she was tapping on her clipboard. I felt like she was angry at me, and my more experienced interpretation of her expression still reads anger. She went from someone I could talk with to a cold wall of rage when I asked about trying to get away or maybe hitting him back. This was just a few months after and I still had pain in my shoulders that radiated from the underside of the joint, and my hands were still swollen. In fact my hands have never fully recovered from the kick of the gun and my shoulder dislocations started then. We had fired guns before as a family, that wasn’t my first time but I never liked it because of the pain and the loudness.

Even as I am writing this I am playing in my mind the moment I picked up the gun. There was no hesitation. Something again that movies show. Women always hesitate with weapons. Men sometimes do, but they have the option of not. I pointed it at him. I remember his face. His eyes betrayed his shock, surprise, and then anger. I pulled the trigger. He didn’t get to mock me first, he didn’t get any lines out like the cliche, “You won’t do it.” He had lunged for me and I fired the gun until the bullets ran out. I have another new fragment but it is like a single frame of video. I see him in it with a police officer, but everything is hazy, I am just aware he is convincing them that nothing is wrong. This is new too, but I had never expected if the police came that they would rescue me. I learned that well before 1992. I just realized it couldn’t be 93, because my brother wasn’t born until AFTER this incident, I was off by a year.

So I have been fighting this for longer than I thought. I have found the most painful idea in my life was that I would just let him hurt me. This is of course not what happened, and no victim EVER lets their abuser hurt them. Even if you cannot or do not fight back, you did not give him permission. My personal battle was learning this. Fighting back is pivotal in my mind as something important. Even if you don’t win, you must try.

I know as an adult fighting back entails more than shooting or stabbing someone. It can be the moment you open the door and smell someone’s pumpkin pie and think “I am free”. Even if that is not true that little moment can give you a hint of the truth for years. The shifted association of foods during Thanksgiving from being all disgusting and triggering based on being raped, force-fed and torn apart with food as the supposed reason I deserved to be raped and beaten even pumpkin pie has confused me. Why was that pie safe? I still can’t eat my mother’s version of mashed potatoes. My father didn’t like green beans so those were safe until the allergies happened but the pie has been as much of a mystery to me as my wondering who I used to be.

I was not reborn in that moment after all, the idea was just a way of coping with the blatant lies I was told about who I was allowed to be. It is amazing to me how many people, in the name of supposed survival, reject the idea that women can be strong at all ages. This has effected my writing, my game play and what I could do. This is not trivial in any way shape or form. The core of who I was did not break, and that is important. My spirit never broke, and who I am is essentially the same on the base level as who I was before. This means perhaps I did not really lose my innocence but instead it was hidden away, so I could survive.

I do not cry much but I am crying now. How can I not cry for I know there are other little girls, women, people in between the male and female who wonder if they fought back. Who are told every day that this is an impossibility. Children do not have the knowledge yet to think critically about if people are lying, this is a skill we learn as we grow. A facet of being nuerodiverse in this world, and everyone fits in there somewhere, is that people learn these skills at different rates. The ability to critically assess a situation or the media is something that must be taught or it must be learned. Not everyone is capable of this and children have to learn from somewhere.

I am left questioning the validity of mental health for women, children, and anyone with chronic pain or PTSD. How can so many therapists male and female believe that women just don’t think of fighting back? Making self defense a taboo or something that is only allowed after a violation is incredibly dangerous. This is a part of the forbidden dialogue of rape itself. We are warned to not talk about rape as survivors. Victims may be unable to do so and a part of this is, even at the age of eight it was hinted that I deserved to be raped. Was eight year old me just so sexy she deserved it? That’s what I have been told. I also came forward with in the statute of limitations and because my father raped me I was told that my case just wasn’t worth the District Attourney’s time. They beleived me. They just didn’t care because I was a little girl. I have never forgotten being told I am not enough of a person, that wasn’t the first time but that was the moment I lost faith in the world itself and knew I stand alone.

Except I do not stand alone. Of all the lies that came out of this worst trauma it was the lie that I was somehow the worst female in the world, worst at femininity, worst at self defense, worst at being loved and that I was alone and no one else would know what it was to want to die, to suffer, or to fear. I was defective. I do not want to kill myself today, and this is the first thanksgiving in a very long time.

I am afraid for the children of this world. The messages that are being taught, the things that even adult women fetishize such as Twilight with its codependant pedophilic necrophiliac abusive manipulative beastiality domestic violence women stay in the kitchen marry for sex and all the other crap that Twilight is REALLY about underneath the sparkling vampires… these messages are the normal for our children not the exception.

In Between the Pink…

There she sits, in between the glitz and supposed glamour of Barbie Doll. On the pink Aisle, if in stock. The most popular doll in the Christmas Season. An Autistic Zombie! Yes, you did read that correctly, that link is a flash page though when it loads on my slow to load computer, the meta data appears to be set up so that people with readers can play too. I may be wrong since I use just a magnifier.  Ghoulia Yelps is also the best friend of THE Popular Girl, which of course in a high school setting makes her Popular too.

 

I found myself fascinated with these dolls in a way that has hit only once before, with Batman. I remember being worried someone would find out I loved Batman when I was small, so that they would then destroy the entirety of all he was. I had no conception of how big he was until I was old enough to indulge. At the moment, the toys I have are comic book related. After the Winter Holiday Season of Shopping HORROR is over and the toys restock, and prices fall… I am going to get Monster High Dolls. This may be less expensive than the monthly DC release temptation. On average before the Christmas Gouging began, they were fifteen USD. Mattel doesn’t even have the dolls on their site, and every where I have poked the internet people are talking about Ghoulia.

 

I think a part of my connecting here is not just my indecent love of puns for names, which if it wasn’t cruelty to animals and they had accepted would have ended with the cat my carer just got today via “Oh hai strange black kitty rubbing on our legs and stealing the ham from my hand” (verified homeless, a girl, and starved to the point of human interaction) would have been named… Malinda Pettigrew! The name may happen, M my friend thinks it’s horrible but loves me anyway. He also promised me a Ghoulia. He was willing to try and get her now, while the internet is full of others having a rabid reaction to these dolls.

Ghoulia isn’t the only Monster High doll that is a goth’s dream who just happens to be made VERY cool by her disability. Nope, lets go over the list. I will not link you to their website again, but if you want to you can go play games there afterwards. Frogger… I mean…Froggie Dash, and a few others. I’ve had too too much fun and now want a color lazer printer for all sorts of printing of useless but amusing stuff.

The Main Character, meant to be the Barbie (since this IS Mattel) is Frankie Stein, she’s sewn together from various parts of other dolls and is of course the daughter of the professors who created both Frank and his Bride, and they consider her Frankenstein’s kid. Being stitched together, with visible stitches, hands that fly off and do things on their own (creating the amputation effect) and being only 15 days old? How is this one not disabled? In a way she has to learn all her social skills from scratch, she could be equated with some forms of Amnesia, surgical scars, and she even has mismatched eyes and a visible assistive device (Bolts in her neck for charging). This is also what makes her, as Mattel is calling it. “Freaky Fabulous.”Oh yeah and her limbs flying off at inopportune moments? Couldn’t that be dislocations? Ehlers-Danlos Syndrome does cause skin splits and dislocations. Frankie Stein are you super flexible?

On each Bio, each doll (even Miss Popular Cleo de Nile) has a Freaky Flaw. This is of course related to their being monsters. There is another feature which my need for the picture on the box to actually match the Doll or I have trouble accepting they are meant to be the same (I am looking at you Bratz) is not a problem with. These dolls actually DO look like their boxes. I’ve never seen such quality. Or so many casket shaped items. Some of the announced accessories have me flailing in glee, literally, because I can go to walmart and buy a casket/coffin shaped …. Jewelry Box!

In fact, I already accidentally bought something Monster High and had not understood what it was. The post Halloween Clearance socks I bought, pink argyle with little crossbones, were indeed branded Monster high. They are also my favorite arm warmers, and alas… I am babbling. Back to dissecting the disabilities of these delectable dolls!

Skipping to Cleo de Nile, daughter of the Mummy… Cleo is not as white as I expected, since the mainstream Media usually casts a woman as white as me to play Cleopatra types. Cleo is more of a honey color, but she is clearly not a white woman. This is impressive, considering how racist Mattel can be. I won’t link you, you can go find all the Barbie’s that are sold as “Ethnic” or all of the black and hispanic Barbies named Keysha who come with a hair salon, which I can’t find for the life of me with a white Barbie… (Yes, that’s… what? Mattel BAD!)

Cleo is the “Rich Bitch” of the cast. There are some very cliche things going on here, some gender reifications though these dolls also rebel in many ways or at least make mainstream toys I like. More on that later. Cleo’s bio has a flaw as she refers to herself as Exotic, which is in my experience in the media a key word for racism and the fetishising of people of color. Leopard print, Faux Mendhi or anything not white bread tends to be called Exotic. This made me a bit uncomfortable with Cleo so it took me longer to admit I really like her. She also is only sold with her boyfriend. Guess she is codependent or he is at least till they get home and the box is cut up. (I want to keep the little skull logos. Heeh!) She is afraid of the dark. Her disability is less concrete than the lovely Ghoulia’s autism or Frankie’s hands running away however she is someone who is always in bandages. That’s about it, but this bootiful character IS afraid of the dark.

Cleo’s boyfriend, who if I have my way will be dating Jackson Jeckyl or Holt Hyde (whichever I get first), is Duece (as in Medusa) Gorgon. Son of Medusa. He has a snakey Mohawk, scales on his arms, and a thousand yard stare that turns anyone he looks at, regardless of them looking back, temporarily to stone. This gives us a few disabilities. Psorisis or any other visible skin condition. This could be from bad acne on through even some scarring. He’s the most popular guy in Monster High except someone who I will mention later. He also has to wear sunglasses at ALL times. This could be taken to the route of vision issues, but at the very least it marks him as other.

 

Next up on the list is… Clawdeen Wolf. Daughter of the Werewolf. She is the first doll I wanted, before I saw Ghoulia. Frankly if you don’t know it… I am a werewolf lover. I dressed up as one for Howloween and the entire concept was fairly similar to a certain miss Clawdeen. Clawdeen is a person of color, so in the initial line up we have… Two for Two. She’s a black woman. This means you don’t have to fight Mattel for dolls of color. There are two defined this way by the company. Of course they are trying to hint that all of the dolls are nonwhite, since some are green, blue, gray etc. I think this is good and bad, but none the less there is no dancing around. Clawdeen is Cleo’s main rival but they are still considered friends.

The main issue that Clawdeen has is what she considers excessive bodyhair. This is her freaky flaw, shampoo commercial hair… everywhere. This is another one that I felt that “Oh just like me!” with. That’s most of the dolls getting the differences sympathetic jump in my brain. I happen to be a person with what society deems too, too much body hair. When I was younger I was teased mercilessly over this. so, Clawdeen does have a disability as most often hirsuitism is based on medical things. Perhaps she has Polycystic Ovarian disease or Endometriosis and she really howls at the moon because her periods are more than a small pain?

My least favorite of the characters, who I still want (so I can steal her clothes for Ghoulia’s War…drobe…) is Lagoona Blue. She’s the Aussie surfer type, everyone’s best friend. She is laid back and is the daughter of the Sea Monster, though I would’ve thought with her name, the creature from the Blue Lagoon. It could be a copyright issue there, but as you can see these dolls should also appeal to the horror movie nerds that are out there. Oh wait… I am one of those too! Lagoona’s flaws for my liking her? She is just another blonde and the fauxguru thing is a stereotype I suspect my Australian friends don’t like. I could ask them but… that’d just be silly. I have yet to meet anyone who likes being stereotyped.

On to her disability analogy. Lets start with the one that may be either super obvious to you or makes you go”Huhwhat?” Asthma. She’s a fish out of water! Lagoona has fins, so she could also be part of the birth defects that are visible listing, and well she is blue so circulation is obviously a problem. She also has dry skin problems and again, scales. Lagoona’s must have item? Moisturizer. She is listed as an Exchange Student at Monster High, so she’s also a fish out of water in other ways. I still like Lagoona but she just doesn’t connect well with me, what with her liking the sun with it’s shining…

 

That brings us to the doll that started my knowing about these young ghouls. Draculaura. I saw the name on Facebook, someone’s daughter is wanting one and it’s a little too late to get Draculaura now, so the parental lamenting had begun. I googled the name and stepped right into the halls of Awesome. Draculaura took some time for me to decide to be okay with partly because of all the fricking pink, it tastes like literal poop to me. So I struggle. There’s enough black and other coloring that the reaction isn’t so bad. In fact the pink issue has me a bit worried about going to buy my dollies in the future because they are on that …Pink…Aisle… in the toy section and I don’t want to just send M the carer, because picking out your own is half the fun I think. I’ve not had a doll I liked before, except the specialty Goth stuff such as Evangeline Ghastly (not linked because her prices are more horrifying than her theme or lack of diversity. She’s white, white, and even whiter). I never really felt that the Living Dead Dolls were that great. I am not much for BABY dolls…

So I will face the aisle so I an get my fangs on them. So, Draculaura, the most goth fashionably…. I want her umbrella for real, the Monster High Umbrella just doesn’t do it for me with the skull. I like Bats. Not just Bat man but the bats in general are pleasing to me. Bats and Butterflies… someday I will have an outfit themed in such a way. Well Draculaura is a vampire, who is terrified of Blood. She’s vegan, lives on fruits and veggies while taking supplements. Saying or hearing Blood, not even seeing it, is enough to make her faint. I think that’s adorable and it does show something often ignored when a character is going vegetarian or vegan. Vitamin supplements are necessary to help with survival and health.

Since I am often accused of being a vampire by random people on the street because I myself need to hide from the sun or fry crispy, I do like little Ula D, as her nickname happens to be. Her disability could be many things. Just side effects of medication making her sun sensitive, carrying the albinism gene, porphyria (though she’d have to have multiple types for the full effects of vampirism). Plus there’s a disorder that exists where you cannot identify faces, even your own, in the mirror. So that fits.

Now there are more dolls and characters than listed on the website. There are a pair of guys I am listing in one category because… Jeckyll Jeckyll Hyde, Hyde, Hyde Jeckyll

 

Jackson Jeckyll and Holt Hyde…

 

Jackson is a casketball player, and the very human best friend of Duece Gorgon. He happens to have the same tattoo, yin yang symbol, and piercing as Holt Hyde.

Holt is a bit of a bad boy, he has blue skin and fire for hair. Both he and Jackson have classic symptoms of Multiple personality disorder, including black outs, memory lapses, and so on. Holt is the school DJ. I am not sure if this is a positive portrayal but Holt doesn’t seem to be evil, which is a good thing.

Some of the characters not turned into dolls yet so no bio availible (but they are coming)

Spectra Vondergeist, daughter of the ghost. She can do ghostly things like floating through walls.

Abby bominable, an exchange student from up north.

Operetta, the offspring of the Phantom of the Opera who has been on a date with Holt. I don’t like her name but it could be worse…

Oh yeah, and.. the most popular person, big man on campus, is … Clawd Wolf, Clawdeen’s big brother. The undolled characters are mentioned in the story books that come under the guise of a diary with each doll. The first issue (regular clothing) dolls all have them. I am not sure what they have for the Dawn of the Dance dolls or Gloom Beach instead but I am sure it’s something just as cool.

So, incase you didn’t follow the link to the flash website with Ghoulia’s Bio… let me tell you about her. You tell me if you think she’s not autistic.

Ghoulia Yelps — a zombie. Her parents are not named but played in the music video Thriller by Michael Jackson. She has light blue hair and pale gray skin. Her appearance is very studious and she wears glasses. She is depicted as timid and shy and could only speak Zombie (basically groaning; a possible reference to the ghouls from the 1968 film Night of the Living Dead and other films from the Living Dead film series. She is also the smartest girl in Monster High. She has a baby blue colored owl named Sir Hoots-a-Lot.

Glasses wearing Ghoulia is the smartest Ghoul in school. She cannot function properly without a schedule and doesn’t process last minute changes very well. Her zombie nature makes her a bit slower physically, and she has trouble making facial expressions and can only speak zombie.

She loves to read and learn new things, she always fits books into her schedule.

Her pet peeve:

Last minute schedule changes and Monsters who cannot speak zombie. There is nothing quite so frustrating as arriving late and having to explain why to a monster that doesn’t understand you.

A direct quote from her bio that is another hint of the ASD:
Favorite Food:
Brains… just kidding. I actually have quite the affinity for rapidly prepared, mass market cuisine. (Translation: I like fast food.)

She likes all her classes and her favorite color is red.

 

So there it is… my new obsession. I have spent days pouring myself into the internet to glean tidbits about these dolls. I am going to sew them clothing, I already know they come with dollstands but if they are in their shoes they can stand alone, they are posable, seen the cartoons on youtube, decided despite it’s pop quality I like the music video… and… that a lot of depth was given over to these dolls. Between their attempts at normal such as fashionable clothing and bodies that are so weird looking my response is, “Well they must have been genetically engineered that way”… there is depth. They aren’t all boy hungry, the attempts at life lessons in the cartoons are pretty cute, and if these had existed when I was a kid? I would’ve been torn between wanting one and trying to pretend I hated them because of my family.

Still, the popular kid is autistic.

I will warn you, if you share this info with your friends, children, and such and they love these dolls… check comments on sites because a lot of people are complaining about Ghoulia’s speaking zombie. These people seem to forget that not everyone gets to speak. A nonverbal character in what is likely to be a TV series, a movie is being made… so not just “high functioning” but… average autistic…

I am definately sold on Monster High. Besides, in trying to find out what is for sale (iCoffin anyone?) I find hilarious things that make me think someone at mattel has seen one too many episodes of the Godfather. Like so. Freaky beheaded horse! A final warning, right now the MH dolls are being marked up to fifty online. Just wait till after the restocking post holidays. They average fifteen to twenty, and if you can be patient which isn’t easy you can afford more dollies! Oh and feel free to send any extra dolls you find my way!

Here are some links to the media online about Monster High. No place out of this blog is guaranteed safe but I had no issues:

MonsterHigh.com – Flash site. Signing up lets you get activity sheets etc. Addictive.

MonsterHigh on Facebook: Has some unique content, such as a Ghoul to English translation. Most are obvious such as Biteology being biology but this is a place to glean more info.

The Youtube Series: The music video with words like Freaky Fabulous, and the short cartoons (skip the thirty second videos, they are teasers of the next episode)

The Halloween Special from one of the cable networks.

Part 1

Part 2

Part 3

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.

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