The Right to Remain Silent (Trigger Warning)

I have so much going on that I have been silent, because writing hurts. Typing sends sheets of agony down my spine.  My belly is swollen and lopsided and no one knows why. I might have a brain tumor or a billion other things making my testosterone levels skyrocket. (Meaning if you think testosterone makes you a man I am more man than you, if you are indeed a dude.) I have been fighting for access to the same care a non disabled woman would have gynecologically, while being torn for a pap by the speculum because the doctor decided that I did not have the right to a less painful exam. THAT has never happened to me before medical fragility or not.I have been struggling. I have also seen every day in the news a murder, maiming, medically questionable treatment usually reserved for animals., continued institution and many other horrible things being done to autistics.  This is true of other disabilities but not to the degree that autistic children and adults have been deprived of the empathy that their victimization should have.  Here is where I should link you to a few brilliant pieces I read but I cannot handle the triggers to read the truths again.

Two nights ago before bed, due to a technical glitch I had a talk with another autistic advocate and we both acknowledged that as children we were taught to be compliant, pliable and to NEVER say no. We were taught that certain abuses, things taught to even children with good parents who are taking the advice that is being given in the form of ABA and other wretched training methods that use violence and pain as therapy, have been used to silence us. Every autistic advocate I know has PTSD from treatment, abuse, and some of that abuse was preventable if they had known that NO was an option. I am not always the most vocal advocate, especially when things are as bad as they are medically, I focus more on staying alive since that is very helpful with the whole fighting for your rights thing. So I am always relieved when I know that other advocates ARE out there. They are persistent, present and even if one of us takes a small step back for our own needs others are there to help with the event horizon of advocacy. Autistics are not seen by most people as people. We are not seen to have pain, rights, or needs. We are seen as a burden, an imposition and a chore.

This shouting anthem should be read with as much loud punk music as your brain can conjure.  It is as close to stating how I feel about all of this as I can manage. My words skim the surface like a waterbug. I want to scream. I want people to HEAR it. To feel it. Take the punch in the gut, take the flag, rise up and listen. No one knows more about autism than we, the autistics. Not the parents of autistics, even the ones who DO listen to us. No one can speak for me. No one. Now if people just listened when I do speak we’d be golden.

The Right To Remain Silent

You have the right to remain silent
That is what they say to the criminals anyway
but being born with an autistic brain
doesn’t make you a bad person
Not unless you maybe rob a bank.
So I am writing this out in the hopes
That you will hear the song behind the words
Flap your hands, look away from their eyes
Defy their toxic works.

You have the right to shout
You have the right to rock
you have the right to sing
you have the right to be
You have the right to no
You have the right to live
You have the right to no
You have the right to remain…

Don’t take their word for what you are
You have value even if they can’t see
Our words are taken through violence every day
but being born autistic doesn’t mean it has to be that way
Trained from birth to take abuse
We are people
Gonna rise and shout
Scream it
Say it
flap it
rock it
paint it
feel it
breath it
SHOUT IT OUT

All the people we see and hear
don’t seem to think we should speak and say
I am not a doll
I am not a toy
I am not a dog
I am a human
I am a human

Raised to say anything but what I really feel
Taught that my words cannot be valued
Do they rape me?
Do they break me?
Do they beat me?
It’s just therapy
Do they drug me?
Make it hard to think?
Make me want to scream?
Do they cause me pain?
It’s just therapy
Silent hands
quiet hands
eye contact
scrubbed skin
Get used to it
Cause it’s just therapy
Don’t say no
Don’t say pain
Don’t say truth
It scares them
Less than them
That’s a lie
Its the lie
Fed to us

So shout it out
tell the truth
Since when does the abuser get to say
What is right
For their victims
We’re the survivors and we’re going to stand to say

I am not a doll
I am not a toy
I am not a dog
I am human
Where’s my equal rights?
Fuck the ADA
I’ll take the social equality the hard way.
I may not stand
I may not speak
I may just breath
I may sing out
I may write out
I may say it too
I have the right to expression
I have the right to truth
I have the right to bodily autonomy
I have the right to … everything you do.

The first chorus has risen, the second chorus too
Remember that you don’t have to be silent
They threaten to cage us
They threaten to maim us
Sometimes that is where our lives begin

I am not a doll
I am not a toy
I am not a subhuman
I am not a monster
I am not a freak
I am probably a geek
I decide my identity

Say No
Scream NO
Live NO
Fight
Fight
FIght
Advocacy
Freedom
Equal rights

You have the right to not remain silent
You have the right to bodily autonomy
You have the right to medical care without fear of being

silenced.
You have the rights everyone else does
We are people
We have thoughts
We have feelings
Fuck you’re empathy excuses for infringing on our CIVIL

RIGHTS

Don’t tell me to be silent
That isn’t very civil
Don’t tell me to keep my hands still
That is an act of aggression
Don’t tell me my anger is invalid because it isn’t yours.
Who fails to see
The human in me?
You are the nightmare monster underneath the bed
The shadows in the closets in every autistic child’s fears
You are the screams without answer when we have no words
You are abuser. You are wrong.

So listen, hear this. Read it. See it. Tactile paintings were

just not enough. I am going to keep shouting because it is ME

who I love. Selfish? fuck yes! Survival! I did it.

Say No
Scream No
Shout No
Live No
Fight
Fight
Fight
Advocacy
Freedom
Equal Rights
This is LIFE

 

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The Atheist and the Prayer.

Sometimes I want to pray. I sit here in constant pain and it is so bad that I may vomit sometime while writing this. I can’t sleep. I can’t really eat. I can’t sit,lay,float,stand. I just exist in eternal torment. Sometimes, I want to pray. I am sure some people will read that and go “So do!” however I am not one for wasted actions. Since i do not believe in the even remotest possibility of a diety of ANY kind be they benevolent, a royal asshole, or the supreme lazy who does nothing sort prayer is wasted for me. Yet I think about my friends and chosen family and I know most of them have religion. Some are agnostic, hovering on the edge. Some are so religious it is a bit odd that we are friends if that is all you know of them.

Some prayers are offensive to me. The prayers for “god” to change my mind so I magically agree with someone. That is creepy. That is rejecting the notion of free will. People praying my gay “Away”. Sorry folks, my gay is here to stay and I am bisexual anyhow. Bisexual, nongendered. Yeah… you can so fix that with prayer. Those prayers were the only ones I knew existed until somewhere in the last decade I met people of faith who weren’t extremists, bigots, assholes, or generally intolerant of people. My angry atheist demeanor shifted because they did NOTHING to me but offer friendship. I didn’t want my loathing of religion and the institution to cost me these people. So I began to soften.

I am writing thisbefore I go to a doctor to find out what the heck is going on inside of my body. I likely will be admitted, i likely need surgery. I have few options that are positive. I know my friends will read this. I know they will care, worry, and fret. I know too they will pray. I used to flinch at every prayer, but some of that softening is my accepting that yes, if you have faith prayer is soothing to you and gives you hope. So take that hope.  I am giving permission for you lot to pray. Any surgerycould kill me and if the last thing I do for my friends is remind them that I do not condemn them for their faith but love them in whole, I want it to be that. (Okay if I do one last thing I really want it to be smiting something ala a hollywood epic film like Beowulf).

It does not hurt me for you to pray. I do not think it helps me for you to pray. If it helps you to get through the aspect of worried friend. Then pray. When I wake up, in even more pain because the only route to fixing this is more pain? I will need you. I can’t promise to be okay. I can’t promise anything but to try and get a good doctor. Just know if you pray at me to magically be cured and I hear about it I may giggle a little. i wish it was so easy.

Today

I have been living in agony for a week or so now. Each day it grows bigger and bigger. I should go to the ER. I actually am aware of that and as my pain blossoms forth a little more I hold out for the appointment on Wednesday. I cross my fingers and toes and hope. I have been thinking today about what i want outof life and what it means to be alive. I do this every birthday, and this year I find my answers shifting. I want… nothing I do not have.  There are things I need but a want is not intrinsically a need. Needs being food, shelter, kitten hugs, etc. A want is dolls, a new computer, that sort of thing. While there are minimal wants there that are things, that is not the same as looking at my life and realizing it needs no changes.

I am looking at surgery most likely to treat what ails me. I know what it is. I know my options. I accept this. I must prepare a living will, I must decide just in case how I want my things disseminated and this has me looking at old ties. I wondered for a bit of my mother misses me or has regrets that I am not in her life. Then I think on that and I found to me it really didn’t matter. Her not being in my life has changed things for the better and a recent bout of facebook looking reaffirmed that my racist, homophobic, hate filled family really is toxic. I envisioned myself having them around out of the fear of being alone with this or any big challenge and I saw it would be harder.  I have stability. They are the epitome of instability.

From my first surgery to this impending one I have had rituals. I am breaking them now. My cats will not be uprooted and put elsewhere. My carer will come to them. I am not going to try and comfort everyone around me. I do not have to because the people I chose for my life are immensely wonderful. Some are far away but they feelso close via the gift of the internet. I can confide in them, laugh with them, call them up on the phone or skype if I have word power. They are not just people I want in my life and that I chose but refueling stations for my will and hope.

I am twenty nine today. Usually on my birthday I feel old and worn out. Usually the fight to just get to one more has me taxed. This year I had to ask for help repeatedly. I had to beg for a blanket, surge protectors, and food. Yet I didn’t LITERALLY have to beg. I really had to just ask. My pride dramatized it. After the concession of pride I found a new level of safety, security and love. I am loved. I feel it every moment of every day. I think back to thebirthdays whenI was young. I would try so hard to not upset anyone so that they might wish me happy birthday. Today I have so many emails, facebook posts, cards, letters and more and I cannot muster a reply to all of them reasonably. I couldn’t see that when I was young.

I am not old. Today I am an adult. I was last birthday too but today I can feel just who I am. No skewing too young or too old. No epic battle on the horizon for my future except medically. No fighting my exhusband so I can just be alive. No fighting for food because there is now a health food store I can go buy things at to liven up my diet. No. I can just be. I will make it to my appointment on Wednesday. I will make it through the decisions my doctor makes. It will be what it is. Today. That day.

This is the first birthday since I was three and the concept of old age struck me where I have not felt old. I am tired. I am in pain. I am alive. I am not wasted away into something useless by age or my infirmity. Today? I became young. Now I will be young even if I live to be 100 years old.

What I am about to do now? I am writing my will and living will. Ihave held back for years out of fear of them being necessary. They still might be but I can trust the people in my life to actually respect my wishes. This is the best birthday gift I could give myself.

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