Sunday, April 2, 2017

Acceptance, "Awareness," and Education

It's World Autism "Awareness" Day, and I want to talk about ableism in education. 

I come from multiple perspectives because I am Autistic, a parent of Autistic children, and a teacher of disabled and nondisabled students. So by trade I am considered a "special ed" teacher, though I dislike that phraseology. I want to talk about my colleagues though, and how "special ed" teachers see themselves and their students.

The unfortunate fact is that many "special ed" teachers see themselves as heroes simply for working with disabled children. They believe their job is to rescue these children from the fate of being disabled, rather than to support and accommodate. I see emails, shirts, initiatives by these teachers, proclaiming need for awareness, or talking of how the children "struggle every day." 

What they do not recognize is that the struggle is caused by lack of accommodation. Kids are told who they are and what they can do, and how they experience the world, is wrong. They are asked to do without accommodations, to learn to not need them. They assume we wish to not be disabled. That being disabled is inherently bad. It's not. Being disabled with appropriate accommodations is ok. It is not lesser.

So our approach is very different. I look for ways to accommodate. They try to fix. If a child does not walk, it is not my job to teach child to walk. It is my job to make sure places we go are wheelchair accessible. 

It causes trauma to these students. Kids clearly communicate, but teacher withholds in order to "teach" them. Kid cries out in pain as they are made to do things their disabled body is not meant to do. 

We need to flip the script. Look for how to support and accommodate needs. Not look for how to make child no longer have needs.

Saturday, April 1, 2017

Ocean Music

Crash of waves
Smell and taste of salt
Clams dig themselves to safety again and again. 
One of my favorite stims.
I have always loved the repetitive magic of this.
Waves unearth clams, and the clams dig themselves down again. 
Predictable. Magical. 
The pattern is always the same: unearthing, digging down.
Seemingly inanimate object, but they are not. 
Living beings.
If you watch them, you'll know.
Too many walk past and miss the magic.
Can't see it, feel it, take it in.
My Autistic perspective feels the magic. 

Saturday, January 14, 2017

The Devastating Dismantling of the Affordable Care Act

I have been thinking a lot about the Affordable Care Act and am so sad watching it be dismantled. It's a terrifying prospect for so many people. This feels personal for me too, though I want to emphasize that I am one of the lucky ones that is less likely to be dramatically affected by the ripping apart of necessary healthcare, piece by piece. Because currently I can work, and have health insurance through my job, I am not likely to be devastatingly affected like so many of my disabled friends. 

I do want to talk specifically about the pre-existing conditions clause. This has directly affected me and is likely to continue to affect so many disabled people. 

8 years ago, I didn't have a job. I had spent 9 years at home with my own children. Then my husband lost his job and the company he had worked for no longer existed. So we needed to purchase health insurance for our family of 5 through the private sector.

Besides the ridiculously expensive payments, we were hit with another surprise. I was told I was ineligible to purchase health insurance because I had a pre-existing condition. 

The funny thing was that this pre-existing condition was news to me. I had seen a doctor earlier that year for suspected migraines, and that was the pre-existing condition that made me ineligible. 

I want to be clear that I think everyone should be eligible for health insurance. Anything less is a death sentence for people with chronic illness. That is important. 

It was terrifying to hear that I am ineligible for health insurance because my possible migraine could be a possible brain tumor. So the logic was that the person with a possible brain tumor should be without health insurance. 

It kept me from pursuing treatment of migraines. 8 years later, they are still disabling and still untreated. Because it became too scary. 

So now I sit here in what is really a place of privilege. I have health insurance through my employer. My whole family does. So we will be unaffected. 

But I also come at this from a place of being terrified. I recognize that I need mental health care for my other neurodivergences. And yet, that will just be another pre-existing condition. And what happens if my situation changes? 

So I am by far not even close to the terror that this can really be for so many people. And yet, I am close enough to it to recognize how terrifying this is for so many of us. 

And I want to point out that many people supporting this dismantling of the Affordable Care Act claim to be Christians, supporting life and caring for other people. But I am sorry, this simply can't be true. You are supporting killing us. 

Wednesday, January 11, 2017

Invisible Person

I use this space as a place to map out my thoughts, especially when my feelings are negative and I have unsorted thoughts. So it can be a stream of consciousness,  but it is real, and it helps me sort things out. 

So I am thinking about how I am this invisible person. I've always been invisible, even to people close to me, maybe even especially to people close to me. 

I get it. I'm quiet. I have a hard time interacting with people. If anything makes me even a little uncomfortable, I have an even harder time interacting with people. I don't stand out. I don't have amazing or novel ideas really. I'm certainly not the life of the party.

But what I am is the lynchpin. I quietly hold things together and go mostly unnoticed. Sure I am there if you come looking for me. I'll be there to celebrate with you when you are happy about something. I'll be there to try to help you through it when things go wrong. But it is in a quiet way, steady, slow, silent.

The problem is that while I definitely do not want to be the center of things, I like the background..... I do wanna know people care, that they see me, that they remember I am there, holding things up in the background. Sometimes I feel forgotten. Lost. Because invisible you know. But that doesn't work for me. I need to feel remembered and cared about, or I quietly walk away, because I don't know what else to do. 

Once, as a kid, I had a meltdown, and loudly cried, saying to my family, "you treat me like a speck of dust in the corner." They dismissed this, and laughed about it for years after. But the sentiment holds true today. Back then I was crying out, trying to articulate the same thing I am still trying to articulate today. That I need to be seen. I need to matter. Because even if I am invisible, I am still there, thinking and feeling, and holding things up in the background.