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I am tired. Bone tired. Soul tired.
When I started this blog, I was in the best health of my life. I don’t mean that in some colloquial sense. I mean, as a person multiply disabled from birth, I was experiencing, for the first time in my life, health. Minimal pain, increased mobility, fewer seizures, and blood counts on the low end of normal, but still normal.
It was amazing. I felt like a super hero in middle of my own origin story.
I wanted to do all the things. “No” and “I can’t” left my vocabulary. The world was big and bad, and I wanted to do everything I could to make it a tiny bit better.
Of course, I am no superhero, and this is no origin story. Middle aged autistic grannies don’t have origin stories.
(And I wonder; why the hell don’t we? Really. We are an interesting and diverse bunch of bad asses.)
But I have to admit, it was fun while it lasted.
I can’t separate out the autistic me from the brain injured me from the chronically ill me from the immune suppressed me.
I am one human; all these things commingle in my one human self.
Self care has become self preservation.
My physical resources are limited, and I must shepherd them even in the face of wrongdoing. Doing what I can, does not mean doing until I collapse. It means doing what I can up to the point where I can still lead a life that is, by my own standards, worth living.
The gratitude I have for being taught that is immeasurable. I haven’t perfected putting this into practice, but each day, I’m a little closer.
Also, I do things outside this blog; some of these projects I will share in the fullness of time.
But first, I will probably take a nap, or have a nice cup of coffee, or see if I can fit in a pedicure, because I need those things.
Post Script: In the disjointed writing of this, I got to read this #AutismPositivity15 post from Renee Salas. It was lovely and filled with so many parallels to my current circumstances, it was hard not to just post a link and go “hey, what she said!” You should go read that.
Blue is the color of my joy. I feel emotions as colors and colors as emotion. Blue is comfort. It is energy without overwhelm. I studied color theory, but it failed to capture my autistic experience. For some things there are no words.
When I was a child I had a daydream. I kept it secret, because I was not supposed to want things, much less grand, beautiful things. I would pull out my 1972 World Book Encyclopedia and look for all the pictures of great landmarks such as the Empire State Building, the Pyramid of Giza, and the Sydney Opera House. Then I would imagine them bathed in vibrant blue light…
There is a progression to my relationship with me.
I was a child, and I hated myself. I was inherently broken yet morally obligated to prove otherwise. I was resented. I was a cross to bear. I was unredeemable. I wished for death, and I was not alone in that wish. Saintly grieving for a child lost was preferable to the day to day of me in all my sickly, time consuming, autistic glory.
But neither of us got our wish.
For all my brushes with death, my body would not die and my brain would not stop grasping for existential justification.
I became a parent, and unconditional love poured out of me. These vulnerable humans were so much their own selves, yet so much like me. They became my justification. Death, while still a possibility, ceased to be a viable choice. I mattered. I still wasn’t a real person, but I filled the needs of real people. The self loathing that previously propelled me forward subsided replaced by this new purpose.
A few years ago, my entire mindset shifted. I am human. I deserve to live, not because I am of use to someone, but because I am alive. I have inherent dignity. I need no justification. It’s disingenuous to say I love or even like myself, but I’m learning.
However, there is a price. The more I accept myself, the angrier I get. The more it hurts. The more I want back the things that were stolen from me like access to education, freedom of movement, control over my own body, and the right to joy. I wrest back what I can.
Which brings me to World Autism Awareness Day, an international effort spearheaded by Autism Speaks, and Light it up Blue. They made this thing that existed only in my mind, this most special childhood fantasy, real, then used it to kick me in the teeth. All over the world people join together in this colossal effort, ignited by a purpose:
To bring about a day where people like me cease to be born.
To spread a message of fear and panic that places me, and others like me, in real danger.
Autism Speaks, you are big and powerful. So far, your Awareness has managed to spread enough fear and misconceptions to make me a pariah in my own neighborhood. You have corrupted the mental refuge that sustained me through untold abuses with your World Autism Awareness Day. But you do not speak for me, and you can not steal my joy.
You can’t have my blue. It’s mine. You can use it for your puzzle pieces, sick little symbols of autism as an affliction, autism as a boys’ club, autism as a thief of humanity. It’s still not yours because you’re using it wrong.
It’s MY blue, so fuck you.
I will keep my joy.
non strobing squishy stim toy
ADL notes to self
even more stim toys
present from my boys for last month’s birthday
freshly painted barn
out to lunch
extreme closeup grandchild selfie
By the third grade, I took changing schools for granted. I was on my eighth school placement. Some had lasted only a few weeks, some an enitre school year, but eventually I either wore out my welcome, or adults removed me for my own safety…(read more)
I am beyond honored to be guest posting over at NeuroQueer. Please check it out.
What if someone made a compilation of your most vulnerable moments?
What if there was a running, public tally of your flaws and mistakes?
What if they told you that collection of fragile moments, flaws, and mistakes was all you were?
What if your needs, wants, and desires were judged solely on whether they were palatable to others?
What if you were treated as a set of behaviors with no intrinsic worth of your own?
It would hurt.
What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.
However, bear with me while I am slightly less sunny. I am recovering from a couple weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.
Suzanne Wright is the co founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve with so many people who had overlooked Autism Every Day and I am Autism. She explained that autism is living in fear. In that we agree, but while her fear is of naked hopping autistic refrigerator raiders making parents lives dreadfully inconvenient, my fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.
Ms. Wright, This is Autism, the Autism you helped create.
This is Autism: Autism is having to work too hard.
The cultural pressure to pass is so intense, my failed attempts sneak up on me. Being natural or relaxed in public is impossible. While I’m a few generations too old to have been subjected to ABA therapy, the ABA paradigm colors how the world views us. Indistinguishable is good. Anything else is dangerous.
This is Autism: Autism is having needs treated as preferences.
Recently, I was to be involved in a project, about which I was very excited, designed to further the empowerment of individuals with developmental disabilities, but my statement of access needs, in writing, through proper channels, was ignored. I was not warned ahead of time that the environment would contain the very seizure triggers I specifically mentioned in my registration. I tried to tough it out, but after three seizures (not counting absence seizures) in less than two days, I had to admit defeat. Understand, I was dealing with people who are professionals in the field of developmental disability. These are the people who should already get it. By no means is a seizure disorder autism, but I do not doubt that my autism is why my needs were not taken seriously. It has happened too many times to be a coincidence. Autistic needs are viewed as wants, then labeled Behaviors. We are expected to control those Behaviors, or have them trained out of us.
This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do.
When I use verbal speech to communicate, understand I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones. My reserves are not unlimited. If I then have to explain the same thing over and over again because it “doesn’t make sense” to you when I “look normal” or because you “know this other individual with autism who does that just fine” you insult me.* If you cannot give me enough time to form words without talking over me and (incorrectly) finishing my thoughts, you are disrespectful.
This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human. That is your legacy, Ms. Wright. In eight short years, you changed the dialogue surrounding autism. That is powerful, and impressive, and so very wrong.
There is a dollar figure attached to my right to exist. Do not tell me it is not there. That is a lie. I see it every time I look in the mirror as if tattooed on my forehead. There exists a ledger; a balance sheet of what I contribute and what I take.
Intangibles count for nothing.
Joy counts for nothing.
Every op ed piece I read defending food stamps or other benefits bend over backwards to point out the majority of recipients are employed. The majority are good people. Good people work.
But I do not work. I am autistic, and being the autistic I am means I am real world, social model disabled. I do not work because I cannot. There are a dozen hypothetical ‘what if…’ or ‘should be…’ scenarios in which I could hold down a job, but that is not my reality.
How much of myself do I have to lay bare for you to accept that work, as it exists today, is a thing I cannot do? I tried, and I had to choose between powering through another year or two that would kill me or come damn close, or admitting I cannot so my children could grow up with a mother.
My childhood was infused with a popular feminist theme. I was taught that a Real Woman is financially independent. She doesn’t need a man be it a husband or larger entity (The Man) to support her basic needs or the needs of her offspring. A Real Woman knows children are an accessory to a career, not something one builds a life around. I regularly heard the words “housewife” and “brood mare” used interchangeably. I am loathe to believe this is real feminism, because empowerment that exists on the denigration and neglect of other’s needs empowers no one.
Growing up, I was also told over and over again my worth was tied to doing Great Things. That lesser people lived ordinary lives, and that for me to live an ordinary life would be tantamount to complete failure. In order to be a worthy human, I needed to be financially independent while actively improving society. Nothing less would do.
So do I own my complete failure, or do I redefine what it means to do Great Things? I embrace both, which yields a very messy work in progress.
I started to apply for disability once, but every worker I spoke to asked the same question: if you are too disabled to work, how can you be a fit mother? I was told, repeatedly and in no uncertain terms that if I submitted an SSI application, a Child Protective Services investigation would be in my future. That is not a risk I could take. My children need me. I know this as much as I know anything. I am the best possible mother on earth for those particular children. That is not negated by my sometimes inability to speak, or walk, or work.
I cannot do it, and I am sick to my teeth justifying myself on this. I had to justify my dirt poor, EBT dependent self daily. Now I am privileged enough to not be poor. Now I am loved unconditionally for exactly who I am by a partner who can work, but I refuse to hide behind that veneer of acceptability. I cast off strangers’ easy assumption that I choose to stay home. If I could choose, I likely would stay home, but I don’t really have that choice. I’m too disabled for gainful employment, and it would be a slap in the face to too many people I respect to fake that.
So here I sit, grateful for the privilege of things I still do not take for granted. Indoor plumbing on demand. Food my children can actually eat. Health insurance, and the ability to make copays. But all those privileges; privileges that should be rights, do not make me a better person than I was when I bartered baked goods made with food stamp purchases for enough cash to make sure my cancer was still in remission.
I am just as autistic,
I am just as disabled, and
I am just as valuable.
I should not need to explain myself, but I do. Over and over and over again because there is always someone out there who is certain they know me better than I know myself. When I have the option, I will choose when or if I use verbal speech, and my reasons are my own and valid. I am not obligated to be verbal just because it would make you more comfortable.
If I am using my few minutes of verbal speech with you, I am offering you something limited and precious. I have carved out a section of my physical health and peace of mind and given it to you like a pretty slice of birthday cake.
How long do most of my interactions with people take?
Three minutes in a drive thru,
Five minutes at the grocery checkout,
Ten minutes of social gathering small talk,
Fifteen minutes for a neighbor to borrow some sugar…
In my verbal marathon, at fifteen minutes I hit the wall. I can try to push past that, but there’s no guarantee I’ll finish the race. I am no longer running on solid ground. After fifteen minutes, maintaining verbal speech is like running on a tightrope. It wobbles. The margin for error is imperceptibly tiny. If I falter, the only option is catastrophic failure.
At best, I can walk this tightrope for the next twenty to forty minutes. These are the minutes when I stammer and rub my arms raw. These are the minutes when I say words that are not what I mean. These are the minutes I am locked in decades old scripts that do not allow for dissent or self preservation. In my head, past abusers bubble up to my consciousness screaming my failures, derailing my thoughts. These are my wounded animal minutes. I will accept almost anything, or lash out instinctively.
I cannot make it past those forty minutes. No amount of trying, wishing, or believing in myself changes that fact.
Forty minutes is just enough time to spend a life surfing the gap. I tried to make it in the work force, and it almost killed me. Not in an I’m miserable and want a good cry, a glass of wine, and ice cream sense (although that counts), but in a high blood pressure induced daily multiple blackouts and increased seizure rate sense. I have too little work experience to qualify for Social Security when I’m sixty-seven, but I am not able to qualify for SSI. If I honestly portray my abilities and limitations, I leave my children vulnerable to intervention by child protective services because disability in this state is still legal grounds for child removal irrespective of any other factor.
Most of my forty minute dog and pony shows are to keep judgement off my parenting. This is simply an extra responsibility required when parenting while disabled. There stands my line. I will not sacrifice my children at the alter of any cause no matter how just or righteous. What Should Be will not protect them, and my primary obligation is to their well being.