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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

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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.

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when your ableism is about yourself

I’ve talked and talked about ableism. I’ve talked and talked about what bullcrap it is. I’ve written so many things about how much ableism has an affect on my life. I’ve said so many things about how much of an impact your ableism has on my own life….

And yet, the person I’m the most ableist is someone I see in the mirror every day. The person that I know the most intimately. The person who is intertwined with me…because that person is me. The person I’m hardest on? The person who I use ableist slurs at? That person is me.

It’s pretty common knowledge I withdrew from college. Largely because of my physical health at the time, but I’d be lying if I didn’t say my neurodivergent brain wasn’t also a factor.

Which is where my own ableism comes in.

I tell myself that if I had just pushed myself harder, I could have gotten that degree.

Which is bull, because if a friend had done the exact same thing, I wouldn’t dream of saying that to them.

Somehow, the words I would never utter to someone else, are magically OKAY when it’s about me.

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

In high school, I was told that I could do whatever I wanted. That my disabilities wouldn’t hold me back. In fact, I was told I minimized my “struggles” and didn’t fully grasp how much my disability impacted my life. This casual ableism, this micro- aggregation… became so twisted inside me, so much a part of who I was… that I likely stayed in college for far longer than I should have.

My own, personal ableism could have killed me. I tell myself my disabilities are no big deal, even though I’m totally and permanently disabled. I cannot work. Not only is my health too unstable, I’m likely to push myself on the days where I am well enough too much and land myself in the hospital. I was threatened at least once while in college that if I didn’t skip class, my doctor would put me in the hospital. My own, personal ableism is lethal.

I talk about the ableism I deal with from others on a regular day. But to admit that I am ableist about myself is hard, one of the hardest things I’ve ever said. I feel that people judge me, and think I’m just selfish or lazy because I can’t get a job. It isn’t for lack of wanting. I desperately want nothing more than to hold down my dream job. I want nothing more than to finish my college degree, but college is a world that is completely inaccessible for me. And THAT is terrifying to say, terrifying to admit. It’s like I’m saying I’m a failure, it’s like saying I’m worthless (see, there’s my own casual ableism at play once again).

My name is Nora, and I am ableist sometimes. And the person I pull down, the person I bash the most, is myself. The person who I judge the most for their disabilities, is me. If another friend were autistic, had my physical health list, had my same brain cooties, I would support them. I would tell them  they were good enough, they were enough. That it was okay they didn’t finish college. But the person who I cannot give that same advice to is myself.

Part of becoming a better person, a better advocate, a better activist, is learning to remove the ableism from my life. Even when it’s about me. This isn’t easy, but it’s something I’m trying to do. And admitting is the first step, right?

 

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Day of Acceptance 2017

I feel like there’s something telling to be said about the fact it’s the disability day of acceptance And the fact I’m having one of my GI flares. I’m sure I could write some profound analogy…but that would involve my stomach not staging a mutiny. But that’s neither here nor there and I really don’t want to write about the president today – my already unstable health cannot take it.

But today is the disability day of acceptance. For those new to my blog or my life (hi new friend!), I am multiply disabled. I am autistic. I am physically disabled. I have an alphabet soup of brain cooties. I don’t even want to start counting my physical ailments but there are a crapton.

I was born disabled, vs having acquired disability. I don’t know what it’s like to be able-bodied and I never will. I have been both accused of minimizing the impact my disability has and of using my disability as an excuse or exaggerating it. I’ve been told that I cannot do things because I’m disabled and that I should suck it up, buttercup.

I’ve been told I am literally incapable of holding a job and this is true. I do volunteer stuff and my advocacy stuff but I cannot hold a job. My disability does not allow that. I’m a college drop out. I will never be capable of going back to get my degree. I will never be capable of having a job. These are things that society says I have to do, to be a good person. To be a valuable person. To be worthwhile in society. So many people place my worth on what I cannot do, vs the things I can do.

Part of growing has been accepting my disability. I dropped out of college three years ago. I should have graduated from college in December of 2014. I was literally a semester and a half away from graduating. But I couldn’t, because I’m disabled.

Disabled children become disabled adults. And accepting this as a reality is hard. I wasn’t ever expected to live on my own, but I did. Even though I ultimately wound up moving in with friends because living alone did not work for me. For years, I tried to deny the fact I was disabled. You’re talking to the person that literally had to be threatened with putting in the hospital in order to convince her to stay home from college classes. I was very much of the “push through, it isn’t that bad, it’s all in your head” mindset. This actually made my disability worse – this made my health worse. Because I couldn’t do the thing even though I tried to insist I could.

Today is the disability day of acceptance. And I’m here to say my life is worth living. Despite people thinking budget cuts should be made to avoid that. Despite people saying that I’d be better off dead than disabled. Despite people saying that I don’t deserve health insurance. I’ve accepted my disability and it’s time for you to accept it as well.

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Adventures of Anxiety!Brain

I have anxiety. To people who don’t know me well and haven’t seen me in panic state, it may not be obvious. I’ve learned how to pass well. I’ve learned how to hide it. Cope? That’s laughable. I still don’t know how to cope and as a result…

To the outside eye, I look lazy. I look like I just don’t do the thing. I look like I’m just putting off sending the email or making the phone call. I look like I just don’t care about my diet when I rely on easy-to-make stuff instead of making actual food. I look like, for all intents and purposes, I’m just someone who doesn’t give a crap about many things.

For the sending the email or making the call thing, I have to write a script. I have to come up with possible replies. Calls are worse because I have to try and think of what their possible response will be. I have to come up with a list of possible outcomes. Emails are nice because if my preferred time to send them is at one forty two AM and the rest of the world is asleep, there’s nothing stopping me with sending it when it’s best. But then I’m plagued with saying the wrong thing. Wondering if I made a grammar error that made me sound foolish. There are so many outcomes. And what if I typed their email wrong and instead of emailing my case worker, I email a random dude with the same name in Ecuador!?

So instead, I just don’t do it. I pretend it doesn’t exist. I act like it’s no big deal and just brush it off. To the outside eye? To the random person who just seems me in a Nora-puddle on my bed with two fuzzy cats, a large mug of tea, munching potato chips, while browsing Tumblr on my phone? I look like someone who is merely unmotivated or lazy but in reality it’s so much more than that. I have so much motivation locked up inside me. I just don’t know how to pull it out.

Likewise, I make easy foods. I have sensory issues and allergies. I make foods I like. I find comfort in my routine and what I know. I don’t tend to branch out often. This means that current, I exist on pasta, chicken nuggets, potato chips, and cheese. There’s a few other things mixed in but for the most part it’s pretty simple and I don’t want to have to make decisions when I already know what I like.

The biggest thing, however, I wish people understood about anxiety!brain Nora is that I don’t cope well with change and pressure. I like things to stay the way I know them. I like things to be the way they’ve always been. I’ve had the same Tumblr layout for basically the entire time I’ve had a Tumblr. I play the same video games over and over despite having a huge back log.  I have a huge pile of books to read, but I go back to my old favorites. I have thousands upon thousands of songs but I listen to the same few dozen over and over. I like my life to be the way it’s always been.

I recently moved. It wasn’t just a move from point a to point b, but it was a move to a new state. Even though I’m literally just a few minutes away from my old state, I had to change everything. I moved away from my friends (though toward other friends – both new and old! YAY!). I started over. And it was very much needed – my physical and mental health is the best it’s been in years. But changes happen. And I struggle to keep coasting and not to just shut down.

When I’m pressured, when things have been set and I’m asked to change what I thought I had stabilized, I panic. My brain goes into overdrive. It feels like I spiral out of control. I like things to be the way I know them. I don’t like things just popped on me at random. Even surprises, the good kind, can be stressful. Which is why change is bad. Which is why I don’t like things not being what I expect. Which is why I cling to my routine. Because otherwise, I don’t know how to cope.

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Sometimes

Sometimes doing the right thing is hard.

Sometimes being an advocate is hard.

Sometimes rallying for change is so darn hard.

I try and I try and it feels like my efforts are meaningless.

It feels like the words I say are empty and hallow. Who’s reading? Who’s listening? Who cares? What’s the point? Who lives? Who dies? Who tells my story?

Sometimes I wonder why I bother. What the point is. Why I am doing the thing.

Sometimes I am just completely overwhelmed and done with it all.

Sometimes I wonder if I’ve made a difference. If anyone will remember my words.

It’s hard.

It’s so hard.

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I don’t WIKE it.

I don’t like change.

I really, really don’t like change. It’s hard. It’s difficult. It’s messy. I’m moving to a new state next month and I’m terrified.

I see my therapist twice a week (which I’m doing until literally the day before I move). Most nights, I play a game or watch a movie until I fall asleep. I see my one of my best friends on a regular basis.

And soon, everything changes.

And to quote Chris Evans, I DON’T WIKE IT.

And everything is chaos.

I find myself approaching autistic burnout.

I find myself regressing.

I find myself below my baseline.

And I don’t wike it.

I try to tell myself it’s normal. It’s okay. That even neurotypical people don’t cope well with change.

But I want things to be the way they are. The move is needed and is very good – it’s getting me into a much better place.

But I don’t WIKE IT.

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Yes, I still hate Autism Speaks.

So today Facebook is abuzz. Apparently, Autism Speaks changed their mission statement to look prettier. For those following along at home, I am not a fan of them.  “But Nora!” I hear you cry out. “They no longer are searching for a cure! They’re searching for a SOLUTION.”

I’m here to tell you it’s the same thing. The exact thing. Cure? Solution? They’re different words for the same thing. And you know what that solution is? You know what their so-called awareness is endorsing? Eugenics.  THAT is the cure. THAT is the solution.

It’s all words. Just words. Blah, blah, blah. Nothing more. They can change their words, but until they change more  I’ll still boycott. They still insist we’re merely puzzles to be solved. And we’re NOT puzzles. They still insist that more boys than girls are autistics. We are still burdens. 

To them, autism does not speak. Autism parents speak. When actual autistics speak, we are silenced. We are bullied. We are pushed aside. Our words? Meaningless.

Autism speaks? Until you’re willing to listen to autistic adults, I’m still boycotting you. You know what your spectrum and solutions are? Wanting me and my friends dead. Forcing us into abusive therapies. Telling us the way we are simply isn’t good enough.

You and your supporters aren’t going to change, I suspect, but this is your chance to prove me wrong and you aren’t just words yet AGAIN.

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I’m A Bad Crip

I was born disabled. I don’t know what it’s like to not be disabled. Every second of my life has been “Oh gods, Nora, you’re SO INSPIRING!”

I have nearly died. I don’t know what it’s like to be healthy. And my entire life I have been told I’m lucky. I’m blessed. I’m special.

I’ve been told I’m inspiring. That it’s amazing I graduated high school in the top portion of my class. I’ve been told what an incredible person I am merely for existing.

I am a bad crip.

I think this is bullshit.

I am a bad crip.

I’m not inspirational just for velcroing my shoes or getting a freaking soda from the store.

I am a bad crip.

I hate being told I’m amazing. I’m inspiring. I’m incredible. Don’t be inspired because I’m disabled. Be inspired because I’m a kickass Hufflepuff. Be inspired because I am loyal to a fault. Be inspired because I can still rap all the words to Jesus Freak, thank you very much. Be inspired because I know all the words to One Week by Barenaked Ladies. That my brain is a useless trap of Disney trivia and 90s Christian trivia.

I am a bad crip.

I don’t accept bullcrap excuses for ableism. I don’t let people push me around. When my PCA was treating me like shit and emotionally abusing me, I spoke out instead of just taking it. I document the hell-wringer the company puts me through, instead of doing what the world wants me to do: sitting down and shutting up.

I am a bad crip.

I’m snarky and sarcastic. I don’t take no for an answer. I push back. I don’t let the world walk over me. When I was told that I looked too good to be depressed and I just thought I was depressed, I ditched the doctor instead of believing the bullshit.

I am a bad crip.

And I’m proud of it.