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Ableism is…

Ableism is when you say that I’m not like those disabled people.

Ableism is when you see someone helping us, and your first thought is to take a photo.

Ableism is when you don’t let us do things for ourselves before offering to help us.

Ableism is when you speak over us and for us.

Ableism is when you get mad at us for not being concise in our speech.

Ableism is when you get mad at us for repeating ourselves.

Ableism is when you shout out “but not all *insert word of the day here*.

Ableism is when you expect us to be happy with what we have.

Ableism is when you get mad you have to reword something.

Ableism is when you’re upset we cannot always control our pitch/volume.

Ableism is when our stimming upsets you

 

Ableism is when you try to change us.

Ableism is when you have standing room only.

Ableism is when you get upset at the person in front of you for not walking fast enough.

Ableism is when you refuse to listen to our voices.

(IMPORTANT NOTE ON THE STIMMING ONE. Dual access needs are a thing here. For example, I can’t stand the sound of pens clicking and it sends me into sensory overload.  But for others, that’s a comforting stim. This is called conflicting access needs, and can, shockingly, be accommodated.)

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Awareness vs Acceptance

Awareness is talking about all the ways we are not like you.

Acceptance is talking about what makes us US.

Awareness is about trying to change who we are.

Acceptance is meeting us where we are.

Awareness is trying to change our behavior because it annoys you.

Acceptance is encouraging it, because it comforts us.

Awareness is talking about all the things we cannot do.

Acceptance is talking about all the things we can.

Awareness is “special interests”.

Acceptance is listening to our knowledge and infodumping.

Awareness is talking about trying to cure us (Which is eugenics. The ONLY cure for Autism is to ensure we don’t exist. I’m pretty sure being alive is better than, well, not).

Acceptance is adapting the world to us.

Awareness is talking about how tragic our lives our.

Acceptance is celebrating the fact we’re alive.

Awareness is Autism Speaks and Julia the Muppet.

Acceptance is Autism Women’s Network  and PACLA

Awareness is changing your child…

Acceptance is changing the world.

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A heart made fullmetal

I’ve been getting more questions than usual about my URL lately, so I’m taking a break from autism acceptance pieces to finally sit down and write a piece on why I chose my domain and blog title. It comes from the AMAZING anime, Fullmetal Alchemist. And these two quotes:

“A lesson without pain is meaningless. For you cannot gain something without sacrificing something else in return. But once you have recovered it and made it your own… You will gain an irreplaceable Fullmetal heart.”

“There’s no such thing as a painless lesson, they just don’t exist. Sacrifices are necessary. You can’t gain anything without losing something first. Although if you can endure that pain and walk away from it, you’ll find that you now have a heart strong enough to overcome any obstacle. Yeah… a heart made Fullmetal.”

If you haven’t seen FMA, well, you should. Even if anime isn’t your jam. Because it’s that good. I can’t say too much without going into spoilers, but basically guy-loses-his-arm-and-leg-and-his-brother-becomes-a-robot-thing-so-they-try-to-become-human-again. Yeah. Well.

I’ve had a lot of pain in my life. And I’ve made a lot of sacrifices. Life hasn’t been easy for me. And I have rods in my back, which I joke are my own personal automail.

My own heart became automail. My own life became making myself strong enough to recover from the pain thrown at me. It hasn’t been easy. But it’s been worthwhile. It’s been a piece of making my heart strong enough to overcome obstacles.

Hard? Yes. Worthwhile? Well, I wouldn’t want these things to happen to me again. Or anyone else. But it made my heart fullmetal. It took my life and made me stronger. And I’m the champion as a result.

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Awareness and light it up blue and stuff

Or: why this day is bullcrap.

I am mostly off Facebook today. I can’t deal with “but I light it up blue not for Autism Speaks”.

Light it up blue is an Autism propaganda campaign, pure and simple. 

Yep.

Autistics have said, for a long time  that this is harmful.

But.

We are told to shut up.

We are told you are not like my child.

We are told to be grateful we can speak out.

Can’t we, though?

Can’t we be grateful we can speak out and still speak out against ableism?

Can’t we tell you WHY this hurts of?

Why are you clinging on to light it up blue?

There are other acceptance  campaigns. They aren’t mainstream enough for you like LIUB is? Then MAKE it so. LIUB had to gain momentum somehow, you know.

Think about why you’re clinging to it. Is it because you like it? Is it because you think it’s all there is? There’s more. There’s more beyond Autism $Peaks.

You just have to look for it.

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On Julia and awareness

So as any of you likely know, I am obsessed with Sesame Street. I have shirts. Plushes. DVDS. VHS tapes. Soundtracks. Yeah, I like Sesame Street.

So I like Julia, right?

WRONG.

If you haven’t been following along, Julia is an autistic muppet.  And she was created for autism awareness. And there’s the problem.

Julia is about awareness. Not acceptance.

Julia was co-created by someone who calls himself the Autism Daddy. Who calls his kid “king shit” to his face. Don’t give me that “his kid doesn’t understand!” bull. He does. He KNOWS.

Julia is everything that’s wrong with the awareness movement.

Prominent autistic self-advocates have been told to shut up.

That we should we grateful for what we have.

That we are ignoring labor put in by critiquing  Julia

I think some people had great ideas for Julia.

I also think just banking on those is ableist and silly.

I think it’s silly that her puppet master is a parent . Why not an autistic person?

I think it’s silly that they use person first (er, muppet first?) language despite ASAN working with them and ASAN being adamant about ID first.

I think it’s silly that when actual autistic people speak out, we are silenced.

Why do you want to parade us and token us except for when we challenge you?

Think about that.

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Autism and Sexism

Many times, I’ve been told that autism presents differently in girls.
Many times, I’ve been told that girls are less likely to be autistic.
Many times, I’ve been told that male autistics are different.

I’m here to tell you that’s sexist.

Autistic girls are NOT different from autistic boys.

Autistic girls do NOT “present differently” from autistic boys.

This is sexist.

At one point, I thought it was eye-opening to read articles about how autistic females presented differently. And then I realized that was my own internalized ableism and sexism talking. Now I am ashamed of myself.

By saying it presents differently, we are erasing non trans and non-binary experiences. What does it say to someone non-binary, if we constantly talk about the diagnosis within the gender binary? We say that autistic males are xyz. We say that autistic females are abc. But what about those who are not? If you fit in those boxes, well, good on you. But we weren’t made to fit in neat little boxes. In fact, by clinging to these things, we are enforcing gender stereotypes. Which is bullcrap.

I know people who have come to their autism diagnosis by reading about how it presents in girls. Which is fine and dandy. But realize that those lists come rooted in sexism. You now know better, so DO better. A female doesn’t need a different form of support than a male because she’s female, she needs different forms of support because she’s HUMAN.

I don’t fit the neat checkboxes of autism in girls – I don’t have a high IQ because my learning disorders make IQ tests impossible. Despite being a straight A, honor roll student my IQ is actually quite low. This is called being twice-exceptional,  where I am so-called “gifted” but struggle with multiple learning disabilties (and the concept of gifted is problematic but that’s another blog post).

Many of my so-called “special interests” (oh mylanta, I hate this term. This is another blog post. That’s two, two blog posts promised in this one. -count von count voice-) line up more with what is considered boyish. If you google “autism in girls checklist”, you get dozens of super gross checklists.

Because I present as female, it doesn’t mean my autism is different than someone who does not. It means it is different because I am human. Just like anything else on my massive checklist of “how many things Nora has been dx’d with”, it is different from person to person. There is nothing unique about my autism solely because I have a vagina. It’s different because I am Nora. Yes, autistic girls sometimes present differently from autistic boys. But autistic girls present differently from each other, just like autistic boys do.

That isn’t to say there aren’t atypical autism traits. There are. That isn’t to say autistic women aren’t disabled. They are. That isn’t to say it isn’t sexist to say that girls are less likely to be dx’d than boys are. They are.

I’ve talked about this with my friends. Some of us male, some of us female, some of us non binary. My friend Leila said in one of our discussions that “all the articles etc. that I’ve seen about “Autism presents DIFFERENTLY in girls!” is all about how autistic boys are mathematical and logical and emotionally withdrawn, and autistic girls are creative, intuitive, emotional artist-types, and, like… that’s just regular old sexism with “autism” in front of it.”.

This is true. Think about it. If we remove the word “autism”, people would be PISSED. “But my son is a creative artist!” “My daughter is a brilliant mathematician!” Yep. But yet, somehow it’s magically okay when we try to make an autism dx fit gender stereotypes. We must question ourselves. WHY? We get pissed off when we try to assign stereotypes, but when it comes to neurodivergence, it’s somehow magically okay?

Why? Do we feel that autistic girls need coddled more? Do we need to make sure we know that they aren’t like THOSE autistics? It’s a form of supremacy, to be honest. And that’s ableist, sexism, bullcrap. Do we feel that they’re superior, because they pass better? (Newsflash: autistic females don’t. Some autistic females pass, some autistic females don’t. Some autistic males pass, some don’t. Some non binary pass…oh, I could go on all day. You get my point).

That’s not to say it isn’t okay to talk about autism and gender. It is. That isn’t to say that it isn’t important to boost female autistic voices. It very much is. Everyone’s voice needs heard – no matter what their gender is.

But when we say we want to smash gender stereotypes, when we say we’re feminists, when we say we’re for equality…we’ve got to include disability in that. And disability includes autism.    It includes realizing that even when we don’t realize it, our thoughts are often rooted in sexism. I’m guilty of it. I’m not immune to call outs. I even used to like and share those posts that talked about how different autistic females are, thinking I was helping my friends. Thinking I was helping making voices heard. Until I realized and questioned why I was sharing it. Until I realized that I was contributing to sexism. Until I realized that no one fits into that neat little box – myself included. Until I accepted that I don’t have to keep lying to myself, to who I am, to make myself fit into the “autistic female presenting” box. I’m still autistic. I still present as female. It’s okay that I don’t meet everything on that checklist – it doesn’t make my DX any less or different.

It’s sexist, plain and simple, to say that autistic females present differently. I think it’s important for us to discuss this. I think it’s important for us to boost female voices, yes. But that doesn’t mean that that, in and of itself, has problematic roots. It means that we realize that we don’t present differently because of what our bits and pieces are or because of what our gender is, but it’s simply because we’re HUMAN and we each have our own jam

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I didn’t graduate college, and that’s okay.

I didn’t graduate college.

I have a massive pile of debt. Debt I will never be able to repay. I have loan companies calling me daily telling me I have to pay when it’s literally impossible. I have a cap and gown that I’ll never wear. At times, I still daydream of the degree I wanted so desperately and came so close to getting.

I didn’t graduate college.

College classes aren’t designed for disabled students. While schools have disability services, they aren’t always to make classes Nora-compatible. My immune system is too week, I get stressed out too easy, I get  too severe of sensory overload, I simply can’t people, oh, you get the picture. They can’t custom craft a class to be perfectly okay for me, because then it would make it inaccessible for someone else.

Part of learning, part of growing, part of acceptance has been coming to terms with the fact I won’t get my degree. I was merely a semester and a half away. But my classes cannot be completed in the state I am now. I didn’t graduate college.

But I am not worthless. The fact I don’t have a degree doesn’t mean that I failed as a person. It doesn’t mean my classes were worthless – I learned a lot. It doesn’t mean that I am worthless – not everyone gets a college degree. I still write a blog. I still advocate. I’m still an activist. I still do so many fun things with my life!

I don’t have a degree. Sometimes I do get stir crazy without classes or a job, hence why I’m trying to find a volunteer thing. I’m not happy just sitting around doing nothing on the days when I feel well enough to do things. I try to do what I can, but it’s really hard when society is designed to go against disabled people.

But I am worth it. I am worth trying. I am worth doing things. And that worth isn’t defined by fancy letters after my name or a really expensive piece of paper.

 

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Beyond awareness

It’s time to go beyond autism awareness. People are plenty aware that autism exists. Every year, the number of autistics murdered by their caregivers grow. This isn’t from a lack of awareness or services. This isn’t from people not knowing awareness exists. Awareness does little for us anymore and in reality, awareness is ableism in a prettier package.

It’s time to go beyond autism awareness. Awareness is Autism Speaks. Awareness is furthering the cycle of our abuse. Of eugenics. I don’t want your awareness. I don’t want you to light it up blue. I don’t want you to talk about what a tragedy it is to be autistic. I don’t want you to talk to me about how some autistics are superior.

Awareness is bullshit. Awareness is being told that I’m not like “those autistics”, because I attended college. Despite the fact I dropped out, due to a combination of my needs not being adequately met. One of those being my autistic needs. Awareness is telling me that I’m not like THOSE autistics who will never leave home, despite the PCA mess I had and wound up unable to live completely alone anymore.

It’s time to move beyond awareness.

It’s time to move toward acceptance.

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Who I Am Hates Who I’ve Been

I am learning.

I was once racist. Ableist. Homophobic. Transphobic. Against myself, against my friends, against people I didn’t even know. I was raised evangelical conservative Christian. Anything outside of my bubble, anything outside of what I knew was really HARD to accept. Because, you see, I had the BIBLE on my side. I was RIGHT and they were WRONG. Their feelings? Didn’t matter. I am really glad social media wasn’t a thing when I was in middle school because I’m pretty sure I would have had an epic case of being a major butthead. I was pretty active online starting around age thirteen, and I outright cringe at stuff I wrote. And this was just on message boards and such! Twitter didn’t exist until shortly after I graduated and Facebook wasn’t open to high schools until during my senior year. My brunt of social media was on Myspace. Yeah. Myspace. 😉 And Xanga and Teen Open Diary and Neopets and, well, you get the picture. Social media was just a baby. And so was I.

I’m sorry for the person I became.
I’m sorry that it took so long for me to change.
I’m ready to be sure I never become that way again
’cause who I am hates who I’ve been.
Who I am hates who I’ve been.

I was young. The internet was young (at least, compared to the form it is in today). I am really glad that one of the Christian message boards I was active on (hi there, Zeeps!) kinda imploded because I’m sure I said some things that would make me want to hide forever now. But the message board literally doesn’t exist so you can’t find it. WHEW. Even reading back journal entries I wrote back when I started Forgotten Regret (my previous blog) in 2010, I cringe at stuff I said.

You see, I thought I knew so much. I thought I was so wise. I did say some good things. But I also said some horrible things. Because you know what? We’ve all done it at some points in our lives. Even if our -isms are internalized, even if we’ve never spoken our thoughts, it’s not something any of us are innocent of. But what matters is what you do once you know better. What matters is what you do once you are told that you need to sit down, shut up, and listen.

It’s hard for me, because I don’t want to admit that I’ve said some really awful things in my lifetime. It’s hard for me to admit that I was once one of the people who cracked “Adam and Steve” jokes. It’s hard for me to admit that I said things that are hurtful to some of the people I care about most. But I was wrong. And I’m sorry. And I’m doing my best to make it better. I’m doing my best to show I’ve changed. It isn’t easy. Change is hard. Heck, I’m autistic. I like things the way they are and I don’t like having to change. 😉 But I can change. Even though it’s hard. Even though it’s difficult. It’s a lesson we were taught in The Lion King, kids!  He said that change is good! He also said this:

““The past can hurt. But the way I see it, you can either run from it or learn from it.””

Yeah, the past hurts. Yeah, it sucks knowing we’ve screwed up in the past. But do we learn from our screw ups, or do we run from them? Do we accept we screwed up when confronted and challenged by things we said, or do we double down and gaslight people? Making mistakes is okay. What matters is what we do when we’re called out.

So I am pledging this.

I am pledging to do better. Know better, do better, they say. I am pledging to accept that I’ve made mistakes in my past. I am pledging to make amends to the people I’ve hurt. I am pledging to do my best to make things right again. It isn’t easy, but it’s good.

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It’s time to trust my instincts, close my eyes, and leap

I’m through accepting limits, because someone said they’re so
Some things I cannot change, though till I try, I’ll never know
-Defying Gravity, Wicked

I am fiercely stubborn. If you tell me I cannot, I will. If you tell me not to do the thing, guess who is going to do the freaking thing? I have a love/hate relationship with this trait. It makes me an awesome Hufflepuff because it means I will kick the butt of anyone who hurts my friends. At the same time, it makes it hard and painful to walk away from friendships that are not healthy for me.

I have trouble trusting my instincts. My entire life I’ve been told they’re wrong. That I need to do what the world tells me to do. Sit down, shut up, be quiet, be still. Even though all these things are literally physically difficult for me. I fidget. I stim. I’m vocal at times. But sometimes I trust that instinct. Sometimes I close my eyes, and leap.

As a disabled adult, I’ve been told so many things I can never do. I’m tired of accepting those limits. There are some limits I have accepted, and others I have not. I have accepted that I will never go back to college and never have a job. I refuse to accept that my life is not worth living. That I still can’t be an advocate and an activist. I refuse to accept that my life has no value, just because I cannot live up to what society says a “good person” should do, what society says someone who contributes to it is like.

I’m funny, I’m loyal, and yes, I’m disabled. I have the limits my own body and my health puts on me, and I have the bullshit limits the world puts on me. But you know what? Striking the balance is fine. Shouting out “NO” to the limits that everyone else tries to put on me, tries to pin me down with, is perfectly okay and perfectly acceptable. Because I, and only I, get to choose my limits. I get to choose what I can and cannot do. I get to decide. And that alone is a huge step. That alone is a big deal.