Archive for the ‘Uncategorized’ Category
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.
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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
My tablet
office essentials
ear muffs
mousepad
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
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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.
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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.
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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.
*actual quotes
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.
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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.
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.
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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.
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I often don’t react to events in real time. The speed of my reaction bears no relation to the magnitude of an event. I need time to process. Time to sit on my feelings and sort emotion from fact, communication from gibberish, and truth from the convenient memes of utter bullshit that permeate any culture. I am careful in my reactions. I do not hold to the notion that if enough people say something, if they seem to know what they’re talking about, and if they say it with enough confidence, then it must be true. A lie told with authority is still a lie.
Do not mistake my quiet for silence. The words are there, and given time to parse them out I will endeavor to make myself heard.
I am a gentle person. I seek in all I do to harm no one, and like all humans, I fail more often than I like. But do not, under any circumstance, mistake gentle for meek.
So I want this understood by the person (and others of that ilk) who felt compelled to spend almost thirty days typing rape centered death threats coupled with my name into google so I could read them in my blog stats:
I am not afraid of you. I have not been writing because I have been busy with my life, not because you shut me down or put me in my place. No matter how many ways you combine my name with the words fuck, kill, and autistic in some pitiful rape culture “mad libs” game, it does not make me less of a person. I am real, valid, and surrounded by love. You are irrelevant to me.
The only reason I post this is because it stands as another piece of evidence. When autistics speak of hostility they face, that is not imagined.
When women posit that sexism still exists on an ugly, violent level, that is not imagined.
It took me a lifetime to get where I am; to reach a point where I believe in my own worth, and self determination.
Now that I am here, nothing you can do is going to make me go away.
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I know many people who don’t know autism do not think of autistics as adults with families of their own. When it is mentioned, I bristle at the idea that I, or anyone else, is raising a family in spite of autism, so I thought I’d give a short, incomplete list of reasons why my autism makes me a better parent.
1. I have less expectations than non-autistics.
As a child, I never played with dolls, thought I’d get married, or imagined being a mommy. I didn’t raise children because having kids was what people are supposed to do when they grow up. I did it because I am needed, and parenting is one of the only things to ever come naturally to me. I have never thought ahead to my child’s first day of school, dance recital, football game, or prom. Although all three of my biological children were non verbal or semi verbal in their preschool years, I never felt the need to mourn the child I imagined I would have. I simply made note, got appropriate help when needed, and let them find their own pace.
2. I truly listen.
All the time to each and every word. In all honesty, I don’t have another option. That point where someone is rambling on and on and it all sounds like “blah, blah, blah”? Nope. I hear and process it all. When I can’t hear well enough to process, it makes me so overwhelmed, I have to stop my child and tell them I can’t listen right now, but I’ll come back to them in a few minutes. Anything else, to me, would be dishonest.
3. Gentle, constant honesty
I can’t lie, but that doesn’t mean I run around tactlessly blurting out truths in a hurtful way. My children sometimes don’t like what I have to say. If they have not put in a full effort, I call them on it, and if their actions are hurtful to someone, I let them know. However, my kids never doubt me. Promises are few and far between around here, but they do not get broken. When my children receive praise, it is genuine and not effusive.
4. Lack of embarrassment
The handful of times I’ve been embarrassed in my life, it has always been due to an intellectual slip up on my part. I have sympathy for the parent who is mortified when their child has a public meltdown, but on a personal level, I can’t wrap my head around it. Do I get dirty looks in the grocery store? Sure. I’ve had appalled neurotypical friends point it out to me, but I don’t notice and don’t care. I’m on my third child who has less than ideal public displays. I have been escorted out of retail establishments, yelled at by strangers, and had the police called on me several times all due to my children’s issues. Inconvenient, exhausting, and occasionally heartbreaking? Yes. Embarrassing? No. Therefore, how I handle these issues is not influenced by outside pressure. I handle each one based on that child’s needs, motivations and skill set.
5. Super hearing
Did that child really think they could get by with that without me knowing? Think again, dear one.
6. I don’t rely on my “executive functioning” or lack thereof.
I write things down. On bad days, the to do list includes items like “brush hair”. My calendar contains appointments set for things like renewing prescriptions and which day of the week my older son stays after school (even though it’s the same day every week). I actually remember everything, but everything is too much to keep prioritized. I don’t assume any task is too easy to screw up. When I do screw up, I work hard to forgive my imperfections. (I have a long way to go on that.)
7. Time management
Here is my autistic secret weapon. I have a near savant like sense of time. If you ask me to demonstrate or prove it, you will be met with a blank stare in which you should infer many four letter words are silently being thrown your way. I’m not a show pony or an autism novelty act. I don’t need clocks or watches to know what time it is or how much time has passed. I can accurately estimate the time any given task will take, and I am rarely wrong. In my head is a constant awareness of each second. I have to concentrate to not focus on it. I have no ‘I lost track of time’ moments, but they sound quite tranquil, and I’m envious of yours. Since this internal clock is my tool, I’m going to use it. If I’m late, there’s a good chance I had a meltdown. Yes, I still do that. No apologies, it comes with the territory, and I’m not supermom.
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This piece is part of a wonderful project by Stuart Duncan of Autism from a Father’s Point of View. Other “awareness” movements rang hollow with me. Frankly, if someone can’t understand or accept me, I’d prefer they stay unaware. What follows is an open letter by Stuart with my own experience added below. If you want a better understanding of autism, I urge you to look for others’ stories as well.
We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.
Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.
This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.
You can not understand or accept the people until you understand and accept the Autism they have.
Autism is a part of who they are.
The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.
Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.
The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.
Today, we ask for your Autism Understanding and Acceptance.
This is what Autism is to me. What follows are my words.
My autism has no filters. The quiet little restaurant isn’t quiet. Every table, no matter how far away, is my table. I hear each conversation. I smell each plate of food. I know the busboy two tables over had a smoke break within the last hour. I don’t want to be rude, but I can’t understand the waiter for the din of words around me. Then someone makes a joke. I might have caught the humor in another setting, but I don’t and stare into my drink or blurt out some overly literal and revealing reply.
My autism has no filters. My dress has seams in four different places. One of them brushes my skin, and I must acknowledge it before I can continue typing. Clothes are rigorously inspected before purchase for synthetic thread that will render a garment unwearable after the first wash. Patterned fabric with more than two colors makes me uneasy.
My autism has no filters. Only with intense concentration can I focus only on what is in front of me. This gives me balance problems. I can take the stairs up, but I need the elevator to come back down. I am not graceful. I do not have a strong sense of how close objects or people are to me. I bruise myself on door frames, and flinch when you make conversational hand gestures.
My autism has no filters. I am unable to lie to you. I could try, but I would fail…and cry…and likely vomit. I will not catch you in a lie. I’ve tried for decades to learn how, and know now I simply don’t have that skill. It’s cost me dearly, and almost took my life. What I can do is rely on those who have proven they have my interests at heart, and use caution with those whom I love too much to keep out.
This said. I am proud of who I am and what I’ve done. I’m a wife, mother, and grandmother. I think my unique perspective has made me a better person. Being unfiltered has made me unfettered. I’m rarely embarrassed. I have a personal moral code, and I follow it 100% of the time. Therefore, I have almost nothing I’m ashamed of. I promise little, but I deliver on those promises. I may not be socially savvy, but I am intelligent and analytical, with a keen knack for research and learning. I don’t run on auto pilot. I take in each moment for all I can glean from it. Rather than blindly exist, I experience life. This, more than all the accompanying inconveniences, is what autism truly means to me.
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It's Bridget's Word 