Archive for the ‘autism’ Category

It’s MY Blue   19 comments

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.

Pale blue squishy chick stim toy with nubby feathers and orange claws.

non strobing squishy stim toy

iPad in blue padded case with handle.

My tablet

Blue folder underneath a blue mini stapler, blue handled scissors, and a blue and black Venom action figure.

office essentials

Blue noise canceling ear muffs on top of a closed laptop.

ear muffs

Blue mousepad on a black table. A black mouse sits atop the mousepad, and a red glasses case sits to the right.

mousepad

Sideways notebook with a list of Activities for Daily Living. Those notes are partially covered by a blue pen and an upside down checkbook.

ADL notes to self

Black stim toy with hundreds of little blue  'needles' conforming to the shape of  the hand of the woman holding the toy.

even more stim toys

Stuffed fabric elephant statue with cross hatched blue, black, and grey stripes. Elephant is standing on a carved wood elephant plant stand.

present from my boys for last month’s birthday

A 'cloud blue' storage shed with brown shingled roof. A rotary clothesline is in front and to the left of the shed.

freshly painted barn

out to lunch

out to lunch

Close up photo showing only the bright blue eyes eyes of young child. Blonde hair falls over part of the left eye.

extreme closeup grandchild selfie

 

Judgement and Fear (#StopCombattingMe)   10 comments

Every day involves a calculation. I walk in a world that sees me as broken, less than. Whether I like it or not, the world is more dangerous for me because I have a developmental disability. When the public discourse is full of words like combat and warrior, and the real results of that discourse are poverty, abuse, discrimination, and institutions, we need to be prepared for battle. It’s not that we’re hostile or unreasonably angry, but the consequence of letting down our guard is too high. So we armor up. We pile on the pieces of objective truth as dictated by an able world. We are quick to mention, repeatedly, our degrees and career accomplishments in a way that is often mistaken for bragging. Rarely is this a prideful act. It’s a Faustian bid rife with internalized ableism. I can show you my credentials, so that you will give weight to my thoughts. I can’t help but notice amongst my educated able friends, they often don’t even know what degrees if any their friends and coworkers have earned because they value each other’s thoughts without question. No cognitive litmus tests are prerequisite.

This is not to say my degreed friends have pursued higher education in order to separate themselves from their disabled comrades. They deserve to not have the purity of their pursuits diluted by pressure to prove their worth. This is an unfair compromise imposed by an able world. No one should have to prove they are not like ‘those others’ in order to stand up and say I am just like those others.

For those of us, myself included, who lack the tools, supports, and serendipitous fortune to have careers or degrees, armor is harder to come by. We need to matter to someone or to fill a need lest our freedom crumble in front of us. We must remain hyper vigilant. We learn the danger signs, the buzz words. We gauge every interaction based on an algorithm of mistrust. There is a crushing emotional and physical toll of this state of alert, but the cost of letting our guard down is worse.

A few days ago , I watched a valued member of the disability community defend use of the word stupid. Many people did not agree with him, and as I started to join those who wished to express their disagreement, I saw two words that stopped me in my tracks.
POOR JUDGEMENT
Right there, in all caps, in comment after comment, he insisted the word stupid could simply mean POOR JUDGEMENT. He was right, one definition of stupid is poor judgement, but that does nothing to lessen the word’s impact. There is nothing simple about the phrase POOR JUDGEMENT.

For those of you who have the luxury of not being viewed as the owners of defective brains, poor judgement is a transitory event. For the rest of us, it’s an identifying factor. For you, a mistake is an anomaly. For us, it’s evidence of our incompetence.

I have been conditioned by years of experience to associate the word JUDGEMENT with danger. If I didn’t, I’d be dead. Not metaphor dead, not hyperbole dead, real dead.

People with power, doctors, psychiatrists, social workers, and the like, know better than to say the words retard or even stupid so they use the dog whistle of judgement, and just like a real dog whistle, my reaction is immediate and intense. Because I know judgement is the word they use
when they lock us in psychiatric facilities
when they deem our rapes too murky to prosecute
when they take our money and our independence
when they try to take away our children
when they deny us critical medical care, or force us to receive that care only in return for being treated like a side show attraction

While I only describe my own experiences, there is nothing particularly unique about them. These words are still too dangerous to me. I do not have the luxury at this juncture to reclaim them.

I cannot tell you what words to use. I will not police your speech. I lack both the power and inclination to do so. However, I need you to know these words are not just words to me. I can not idly stand by and assume best intentions. That may well be the kindest course, but it is also the most dangerous assumption.

Posted March 9, 2014 by itsbridgetsword in autism

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Love Not Fear   9 comments

What follows is my contribution to #BoycottAutismSpeaks flash blog, #LoveNotFear. It is sparse. I wanted it to be more because I believe in this effort. I believe the rhetoric of tragedy and the push to fix what is not broken hurts the connection between children and their parents, and that breaks my heart.
However, I could not bring myself to write of how my life has changed so dramatically in the last four years. It is a beautiful thing, but some stories are not ready to be told.

I am safe now. I am safe.
Some days, I need to remind myself over and over. It becomes a mantra. I have to remind myself.
Some days I forget. Some days I just cannot believe.
Fear kept me alive for the over forty years I lived as a disposable human.

The fiction that I was less than human crumbled when I was faced with my own neurodiverse children. They are wonders. They are art. They are so fully human that it fills me with awe and sets my heart on fire. I never felt fear or disappointment in their deviance from some mythic norm. They are precisely as they should be. Yet, I see myself in them, and for forty plus years, I heard nothing but how I am damaged, defective, less than. I could not apply the corollary to these loves of mine. I have always, and will always love, accept, and treasure exactly who they are. I could live no other way, even in the absence of anyone who loved and accepted me. Love outweighed my life experience.

Posted February 13, 2014 by itsbridgetsword in autism, autistic families

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What I Cannot Change   Leave a comment

This time is difficult for me.
It roars
with ghosts
that I am not allowed
To mourn

Posted January 27, 2014 by itsbridgetsword in autism, autistic families, depression

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Always a Girl, part two (Guest post at NeuroQueer)   1 comment

Three completely unrelated facts:
I am autistic.
I am queer.
I was consistently misgendered as a child.

Growing up, these three facts were treated as one pathological whole. Girls are soft and warm. They communicate with others. They show affection easily. If only they could make me more feminine, the rest would fall into place. Meltdowns were viewed as acts of aggression; violent masculine behavior. Surely if they could not curtail the masculine behavior it would irreparably damage my development…(read more)

Posted January 9, 2014 by itsbridgetsword in autism, autistic families, lgbtq

For Issy   8 comments

Issy-

I am sorry.
I want desperately to undo what has been done to you, and I can’t. I simply can’t. If you were one of my children, I would fold you in my arms and let you know you are a treasure. You matter just as you are. Not some trained, controlled, acceptable incarnation of you, but you in all your glorious, messy beauty. You deserve love and acceptance. It breaks my heart that you didn’t get that.

You deserve quiet, peace, and privacy. You deserve room to grow and a safe space in which to do so. I am sorry you didn’t have that space. I didn’t either. I did what I needed to survive, and I broke over and over again. My adolescence was a string of Faustian bargains, and I stumbled into adulthood yoked to some skewed culpability manufactured by the very people who forced me into those circumstances.

I grew up in a different time. There is no record of the events of my past, and I owe it to no one to dredge them up and justify my actions. All my supposed sins are my own. I can hold them close to me. I can guard my secrets, not out of shame, but out of love for my self.

I am sorry your pain was turned into a public spectacle. Do not feel shame. Do not be embarrassed. You are not to blame. There is a community out here waiting to fold our arms around you.

Because you are a treasure.

Posted September 7, 2013 by itsbridgetsword in autism, autistic families

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Gift   13 comments

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…

STOP!

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.

Posted August 2, 2013 by itsbridgetsword in autism, autistic families, Uncategorized

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