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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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The Cost of Remission

I am in remission from many of my chronic health things. Which isn’t to say I don’t struggle and I’m not in remission from others. I am not currently in remission from fibromyalgia/chronic pain syndrome (no, my doctors cannot decide which I have. Yes, it’s awesome), from neurofibromatosis, from my neurodivergent alphabet soup…but others I am in remission from. And it comes at an incredible cost.

There’s a delicate balance to keep this going. The things I will NEVER be in remission from and NEVER recover from can trigger the things that can be controlled to spiral again. My diet and my sleep schedule? Require to happen just so. And sometimes my other disabilities prevent that from happening. Which creates a vicious cycle, I know.

Remission doesn’t mean I’m healthy. It doesn’t mean I’m doing well, even. It means I’m doing marginally less sucky. It means that one aspect of my health is slightly less crappy than the other – and that’s not saying MUCH. It doesn’t mean I don’t still struggle. While I may not be actively puking violently from cyclic vomiting syndrome, I still struggle with nausea every day and often have to drug myself to get through. While I’ve been seizure free for years at this point, it doesn’t mean that one day (note: I do NOT have epilepsy. I had non-Epileptic seizures related to a medicine side effect but I’m told they could come back to haunt me) I will not have one again.

It’s hard. I still live in fear of remissions. I live in fear that my delicate balance will get thrown off kilter and that I will no longer be in remission. It’s just so HARD. I fight and I struggle and I try to LIVE and I am scared that one day I will no longer be able to. I am scared that one day I will be longer to be able to do the things I love. I had to leave my passions in school behind. I had to leave my dreams of a career behind. And it’s been a REALLY difficult pill to swallow. It’s been incredibly difficult to realize that yes, I am disabled and yes, I will always be. There’s no way to candy coat it, sugar coat it, make it prettier. I can’t work a job despite having some things in remission because others just aren’t and it isn’t feasible for them to be despite being on all the best medications.

I wrote this in the middle of the night, while listening to music, and scheduled  it to publish during my neurologist appointment. I don’t have a normal sleep schedule. I don’t have a normal eating schedule. Nothing about me is normal…and it’s a ticking time bomb in some ways. It’s a mess but at the same time, it’s my mess. It’s my life. I’ve accepted it. Embraced it. And am moving on with it. Because it’s all a part of who I am. The bad health stuff, the good health stuff, the alphabet soup of brain cooties. It all adds up to me. And while remission comes at an incredible cost… I’m okay with that.

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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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Adventures with Anxiety-Girl: now with extra anxiety powers!

Hi, my name is Nora and I have anxiety.

I have officially diagnosed general anxiety disorder, OCD, and a smattering of phobias as well as suspected social anxiety. This makes life, well, interesting at times. Living with anxiety isn’t easy. Living with anxiety is kind of like living with someone who is constantly abusing and gaslighting me, only that person is me and lives inside my own head. It’s horrific.

I feel that a lot of times, people think I use my anxiety  as an excuse. No, it is’t that I just don’t want to make a phone call. It’s that I literally feel physically ill before making them. I often wind up shaking before and after making them. It isn’t just unpleasant, it’s literally uncomfortable and often times actually physically painful. I’ve had full blown meltdowns and thrown up simply because I have to make a phone call. It isn’t attention seeking, it isn’t guilt tripping. Making that phone call is sometimes actually, really and truly, impossible.

While I’m an introvert and hardly a social butterfly, I’m also bubbly and outgoing. I like going out and doing things. However, anxiety!brain is sometimes plaguing me with “what ifs?”. What if this happens. What if that happens. What if if if if if…and starts to spin me into a downward spiral of despair that is neither productive nor helpful.

I have been this way since I was a young child. I don’t know what it’s like to not have anxiety. I replay convos with friends over and over in my mind, before and after they’ve happened. I honestly had no idea that people existed that didn’t obsess over everything they said or everything someone else said. When I started texting, I didn’t know it wasn’t normal to panic over words on my screen.

Sometimes I’ve seen people ask “what’s one thing you wish people understood about xyz?” There isn’t one thing I wish people would understand. I just wish that people would realize that it ISN’T simple like that. Just understanding one aspect of it won’t magically make my life easier. Just understanding that hey, sometimes I can’t do the thing you want me to do or something I have to do things differently so anxiety brain doesn’t cause me to have a panic attack doesn’t really make a big difference. What I DO need you to do is to stop shaming us.

Different people cope with their anxiety differently. I choose to medicate. For me, it’s the best choice. I can tell a difference in when I take my meds and when I don’t. For ME, Nora, medication is the right choice. I will not, and should not, be shamed because I choose meds. However, for someone else, medication may not be the right choice. It may make it worse, or they may plan just not want to take medication. And you know what? That’s their choice too. Just because we have psychiatric disabilities doesn’t mean we should be denied agency.

Anxiety always has, and always will, be a part of my life. I’ll never fully live without it. Through self care and accepting my limits, that’s what living looks like to me. That may not be it to someone else, and that’s okay. But this is my edition of adventures in Anxiety Girl! Your milage may vary.

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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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Yes, I am a “keyboard warrior”.

Why I am a keyboard warrior.

I have seen a lot of memes and posts over the years trashing so called keyboard warriors. Also known as “slacktivists”. It seems that since we use our keyboards to speak out and we’re deemed to be hiding behind a screen, our opinions and voices aren’t valid. I’m here to tell you that’s ableist.

There are many reasons why I choose to use my blog and Facebook as a platform. And when you try to tell me that isn’t valid, you’re being ableist. It’s flat out gross to imply what I say isn’t worthwhile because it isn’t possible for me to do it in what you deem to be real life.

I can’t attend protests. It doesn’t  mean I don’t want to. It doesn’t  mean I don’t care. But what it does mean is that due to anxiety and being autistic, for me it simply isn’t possible. The mere thought of attending one makes me physically ill. It doesn’t mean I’m not willing to help organize one, make signs, etc. And frankly, what is needed isn’t always bodies at protests. It’s one thing if you’re at a protest, but there’s also value in behind the scenes work. Your health is still important and if attending a protest isn’t a part of taking care of yourself, is it worth the cost for you? For some people, it is. For others, it isn’t. And either option is okay.

Here’s the thing. We can make a difference from behind our screens. It sometimes is large scale, it sometimes isn’t. Changing a friend’s mind is making a difference. Offering a new perspective is making a difference. Sharing an article is making a difference. Making a difference and being an activist isn’t always adding a new voice or a new perspective. It’s something amplifying what is already out there. It doesn’t mean that I’m lazy or I don’t care because for me, the best form of being an activist is by typing.

It’s ableist to say that I should just shut up. It’s ableist when you tell me that I’m not making a difference. It’s ableist when you call me lazy for choosing this form of speaking out. It’s ableist. Not everyone can do every form of activism. And that is healthy and OKAY.

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I was once a self-professed grammar nazi. (I now wince at that wording. Like, wow. “Nazi” is NOT a good choice of words there!”). I gleefully corrected the grammar of anyone who was wrong. I didn’t care how blunt I was; I didn’t care how I made them feel. What was important was pointing out that they were WRONG and I was RIGHT. Thoughts and feelings of others? Didn’t matter to me. The thought that I could be hurting someone on the other side of a screen? Well, why did it matter, right? Didn’t they know that they were wrong and shouldn’t they be glad I’m helping them learn grammar?

But then I realized some things. Insisting on proper grammar is racist. (EDIT: this article was shared not because I agree with the author. I disagree with the writer and agree with Chalabi. This is an example of someone disagreeing with it. It’s still racist. There are a couple good points in the article but it’s an example of someone being the unnecessary type of grammar snob as well) It’s classist. It’s ableist. AAVE is proper English, even though people seem to be quick to correct it. And quite frankly, it has no place in the social justice movement. It is almost important to keep in mind that many more people are using phones or tablets, which make grammar errors even easier to happen. Autocorrect, typos, it all happens so much easier. I mean, just today I messaged my roommate with “booby dungeon” instead of “bonus dungeon”, so, like, I know perfectly well how easy it is to fall down the autocorrect hole. 😉 Continue reading