Conformity (Trigger Warning)

I have learned to conform. I am an adult woman with Autism. I am a public speaker. I am a writer. I seem social. I can be the social butterfly. I learned to be a chameleon through abuse. You adapt to survive, at least I did. My name is Kat and I am guilty of self abuse and the perpetuation of the normalacy stereotype.

I realized it today, it is a revelation I have had several times. I do things to blend in, when it hurts me. I am learning how to stop. I avoided using a wheelchair for two years too long because I wanted to blend in. I wanted to pass for normal. I remember the first time I was told by my mother that I was not normal, she did it first you see. She told me I was weird first. I had a date, it was Valentines day and I was four years old. My neighbor Jeremy asked me to the dance. I remember my mother curling my hair, I remember the texture of my dress, it was a silky satin with velvet dots. Red and white of course. I went and pulled on a red sock and a white stock, and then put on my white shoes and proudly went to wait for my date. She even let me put on some lipgloss.

She shamed me. She used my full name, something that my mother only does if you are in trouble, and she said, “Only a stupid person would wear their socks that way.” It may not be word for word, the memory is filtered through damaged moments and is fractured. It’s just a flash amid other flashes. I can remember the dance more clearly. I remember she asked why I was wearing them that way. She jokes about it now but leaves out that she first shamed me, I replied with, “One sock is red and it matches the spots the other is white and matches the white.” I wore my mismatched socks to the dance. My date brought me flowers, he even kissed me on the cheek when I came home. His mother of course drove us, and we even got to go have pizza for dinner. It was sweet, yet also reflected two children trying to mirror the hetero-normitive behaviors of their parents.

By the time the weekend was over I knew to never wear mismatched socks. The rest of the weekend is melted away into a blitz of abuse, pain, the normalacy of my then home. I remember my neighbor Mr.Chang watching. I remember just crying in his arms. I remember his wife saying she thought it was a good idea, but the damage was done. I did my best to always match. You must never mismatch. The result is that I dropped color from my clothes, starting with my socks. They all had to be the same color. The older I got the less color variation existed until for the last decade all I wore is black. You can’t be made fun of for being fat if you wear black and no one can tell you that you are stupid for not having things match to their tastes. I like color, I like to wear what feels good. I still think my outfit was damned good but now, if I like something and want to buy it and it is not black I have to fight with myself, and usually I lose. Mother’s Perfect Person wins.

MPP is the one that knows you always make eye contact. I hate eye contact. I can’t put into words why but your eyes are creepy, so I don’t want to see them. Mine too for some I am sure. I can’t remember if it was Mother or HIM (this HIM is my biological tissue donor aka Daddy). I was bad for something, it was a small something but I couldn’t look at him. Him was loud, him was angry, and his eyes were bad. “Look me in the eye young lady.” I tried, but I couldn’t do it. There was bright light too, and I was small and he was big. He was close so looking into his eyes meant standing funny. If I did that he’d hurt me. It was another line of pain. Some of these weekends of abuse probably are just a montage my mind has made up of suppressed memory particles, as for flashes I am different ages or not in the same clothes. Still I was slapped and pinched and punched until I could look him in the eye. MPP kicks in with every conversation. “You can’t get too close,d on’t be too quiet, don’t be too loud, don’t fidget, don’t breathe too much, don’t eat where people can see you, you are too fat anyway.” There is a check list for how I interact. I try to avoid using it now.

The more stressed I am the harder it is to not use the MPP check list of Perfect Person. Even if I do it all right I am still the weird kid. I will always be on the outside. Sometimes I wonder if the MPP list is what beauty pagent children learn, those girls with the big hair and horribly terrifying make up. They are what MPP is in my head. Stand up straight, smile, make eye conact but don’t stare. It hurts to waste energy on this. Most of the list is gone but eye contact? Nope, I still stare at the forehead or behind you slightly, or just over you. I can’t look away, I can’t blink sometimes. I get told I am so intense, but it’s just because I am trying to multi task. Remembering when to pivot slightly so I don’t look like I am ignoring you and staring over your head. Saying the right things back…

I never could afford the actual right clothes, I never could manage to truly pass but I mastered normal behavior. Normal means to me suppressing what you feel, not speaking out when someone does something wrong, always admitting you are imperfect IE you must be humble, don’t admit you are smart because the men may feel bad, after all a good wife is humble, quiet, and like a child only speaks when spoken to. I think I married the wrong man because of MPP. I didn’t realize I could tell him that his sex was god awful. I didn’t realize that he was wrong for me even because I just didn’t have the skills.

I hear so often that autistic people can learn to blend in. I am proof we can but I also know the cost. If I had been allowed to be myself, I wouldn’t have become a criminal. I assaulted someone in school because I couldn’t deal with what she was doing and I couldn’t be PERFECT anymore. This person was my “best friend” as well. I nearly killed her because of a culmination of break down, because I learned to blend in. It made the news again recently, some poor autistic person being forced to endure water being dripped on them until they stop freaking out, their body scrubbed with a brush until they don’t want to tear their clothes off, loud sounds until they learn to not cry when they hear them.

Learning behaviors to hide the things that are wrong to us is not CURING Autism. It is abuse. The cure for autism is child abuse. I remember birthdays. My family lumps all the birthdays in September into one party. We always went to Pistol Pete’s Pizza. I never remember having fun, I remember always being driven to tears because it was too over whelming. No one ever bothered to ask why I was over stimulated every time, it was instead something I was mocked for, beaten over and punished. I still cannot go into those places but at least my food allergies protect me. Loud crowded places are torture but I was not allowed to not go, and when I had a melt down I was beaten publically. Never once did anyone say a word, because I was an awful child for being upset when I should just have fun with sirens wailing in my ears.

I am writing this while triggered, because you trying to cure my Autism is a trigger. I can self advocate but I think I could have done that if I wasn’t abused much more freely. When you touch me and I punch you, that is a side effect of the abuse. I wouldn’t hit if I wasn’t tortured. All the bad smells, the bad textures, the torture, it wasn’t just my parents either. Nor did any of us know I am a person with Autism. Other children mimicked their parents and did things that hurt, the parents who weren’t mine but were strangers did so, principles did so, though one of them actually tried to help me. Teachers did so, though again there were those that tried to help me.

I have survived an onslaught of violence against my identity. I have given up my birthname because if I use it, I cannot be me. That is a different person that you and your kind murdered long ago. Some of you may say “If you were diagnosed you would be dead”. You are wrong. If i was diagnosed I would probably have had some kind of HELP. I am twenty five years old and until two years ago I had no HELP. I was just ‘eccentric’. I am unable to stop crying right now because of your cures.

Without being beaten into conformity I wouldn’t be trapped by my wheelchair which is broken again. I wouldn’t NEED it. Without being beaten into conformity I wouldn’t have lost my job, the one that lead me to more pain and suffering. I wouldn’t have been broken and not known it. Without being beaten into conformity I would not be afraid to create.

My Autism was never cured. My independance was, my identity was, my ability to dream was, my hope was, I was cured of being able to make friends, I was cured of hope, I was cured of self confidence, I was cured of any vestige of peace. I have had to find a cure for the cures and that is a life time in the making. I know that many punishments I faced would not have been torture if I wasn’t Autistic. If the demons that you see Autism as were accepted, if I was an equal citizen I would have been able to be helped.

As an adult looking back I can see countless people who should have done something, some who knew. I remember the moment each one of them turned away and chose to do nothing. Each and every child that has their autism cured through violence, sensory torture, and other forms of “cure” that are advertised is a child that you are guilty of murdering. The body can live on but the soul rots from the pain. Every child that learns to act the part of Perfect Person, every single one of them is a child that learns that their own dreams, life, and what makes them who they are is evil. Every one of us is a child that grows up and either perpetuates your cycle of violence or must break it. You set us back from evolution. You set us back into prisons.

My mother apologized for not protecting me as a child. She said the words in December, and as I learn who I am each day as I try and come back from another round of attempted murder? All I can think of is… what if she had even tried once? What made me so bad that I wasn’t worth protecting or saving? The answer is nothing. There is nothing wrong with your Autistic child, they merely are unable to see the world through your eyes. Can you see exactly what another “normal” person does anyway?

What I really want is my mother to realize that it wasn’t a lack of protection that hurt me so much as the actions on her part that also are abuse. I want her to see that doing nothing isn’t all she did. Every time she couldn’t get out of bed and I had to compensate for her, most of the time poorly by her standards, and she yelled at me for failing? That was abuse. Every time she tried to make me seem normal, every time she hid my bruises, every time she ignored the fact that maybe my wanting to kill her husband meant he was bad not me? Abuse.

Some of my rage at her has to do with what she did to make me conform. She never once apologized for forcing me to take drugs. Antidepressants, antipsychotics, anti individuality. Yes some people need them but she never considered that the problems weren’t in my head. I was given drugs that weren’t legal for children to take, some weren’t FDA approved, and many were recalled because of liver damage or other DANGEROUS side effects. Now that I need something like that, there is nothing I can take because my body already has a reaction to everything. The cost of conformity was trying to suppress any feeling. If I felt any anger it meant they upped the meds. If that didn’t work they added meds. I dealt with drug interactions. I was her child. All she wanted was for me to be perfect, was that too much to ask of me?

Is it any wonder I thought she didn’t love me? I still don’t think she does. I do not know if I can love her. I didn’t even know I could love until HIM (exhusband Him not the other HIM). When I did love it turned into something so horrible. The only reason I know I can love is someone else but if I mentioned that person to her she would just belittle my friendship. Is it any wonder I thought that I should kill her? Maybe it would stop hurting then.

I spent years having dangerously long nose bleeds from the drugs, but the drugs were more important to her than I was. I got off of them by trickery. I asked if I could try going off of them and she said no. I had missed a single dose and had felt better so I wanted to try at least lowering them. She told my doctor absolutely no. There was never discussion about what I wanted or even asking me if I felt it was working. If there was, I can’t remember. What if so many of my missing memories aren’t suppressed but I was too DRUGGED to remember?

My trick? I didn’t argue in the office. I just pretended to take them. I stepped down and didn’t go cold turkey aware that this was how you do it. I took a pill out of the bottle at each appropriate time and would let her see me take it, then coughed it back up. I never took them with food just in case. Three months passed and my mother complimented the doctor on his choice of medication. She had never seen me happier or so functional.

I told them then, I went off the meds anyway. My mother freaked out. She demanded I go back on, but I replied, “You said you haven’t seen me this healthy, so I don’t think so. I went off with in two weeks of the previous appointment and I am not going to take whatever he prescribes. Sorry I had to waste your money,” she’d complained of course that I cost her money. I walked out. That was the last time I took medication that I didn’t think I needed.

This is why I have suffered my pain, this is why for years I refused to take any pain medicine even though it made me mean and nonfunctional. I don’t know if I can ever forgive her. I don’t hate her… I just find I care less and less everyday. Yes if she dies I will cry but I suspect it will be about what might have been. I didn’t cry at all over the psychopath she married. I cried for my brother. Will I cry for her? Will it be out of love? Will I even want to go to her funeral? I know I will but I also know I will endure abuse by going… so maybe I won’t.

I am tired of conformity. I haven’t conformed for several years. Conformity is expensive anyway. I write, and that goes against my mother’s ideal of conformity. I wrote a novel once, and the computer, back ups, and even the monitor were all destroyed. By HER. I stopped writing for many years because of my mother. She expects that I will not recall perhaps? She expects me to love her unconditionally? I used to. I don’t believe in unconditional love over all, I think it is rare. I don’t know if I even love my older siblings. I loathe them, but I don’t know that I truly care about their successes or failings… after all, they were considered normal and were given everything.

I do love my younger siblings but, I find they grow more and more distant all the time… because no one wants a weird older sister. I am weird. I am Autistic. I am creative. I am default goth. I am the crazy cat lady. I am a person whose life story when shared with people is often told she lies. I am cured of my normalacy… I am cured of conformity. My dyed black hair with bright red roots? I can’t afford to dye it again… and I think I am starting to like it.

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.

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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