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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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sometimes i’m quiet about things that matter

When I first became advocate!Nora, when I first became an attack badger…I fully threw myself into it. I lapped up every cause I cared about. I defended things to the death. I mean, you can kind of envision me sitting in front of my laptop/phone/tablet being all “FOR NARNIA! AND FOR ASLAN!” right? Or… you know, whatever my cause is. But you get the point. At the edge of my seat .Ready to fight. Ready to attack. Ready to defend.

You know the old song? Lean on me, when you’re not strong. I’ll be your friend, I’ll help you carry on.  For so long, I’ve been the person to lean on. For so longer, I’ve been the person ready to defend, to speak out, to pounce, to say the things that matter. For so long, I’ve been so ready to be at fight me! mode that I forget to do things that are also important.

And so, sometimes I’m quiet about things that matter. Right now, we have a commander in chief who, well, many have very valid concerns about, to put it lightly. Concerns that could, and likely will, affect me and my livelihood. About people I love deeply and would truly do anything for (the “would do anything for” list is very small, though the “I will fight for you” list is hella long). And I’ve kept fairly quiet about it on Facebook.

I feel like people think I’m privileged because I haven’t been speaking out like they have. I’m not – I’m autistic, I’m disabled, I’m low income. There’s so much that matters. But like anyone, I burn out sometimes. And right now, I am quickly spiraling out of control.

Many of you know that I cling deeply to being a Hufflepuff and consider it an essential part of my identify. Right now, I am a burned Hufflepuff. I pull away. I retreat. I am burned out. Because right now, being quiet is an important part of self care. Right now, when I fully emerge myself in politics and whatnot, I make myself physically ill. And my already fragile health cannot handle that. It doesn’t mean I don’t care. It doesn’t mean I’m not affected. It means I’ve learned the lesson of saying no and I’ve learned the lesson of when to speak. You know, like the Bible verse. A time to speak, a time to be silent.

It doesn’t mean I will be quiet forever. It doesn’t mean I no longer care about politics, the world, my friends, or being an advocate. It means that right now, I have to be silent about things that matter. It means that right now, the right step for me is taking care of myself and those closest to me. One day, I will be an outspoken advocate again. One day, I will say all the things again. But that day is not today, and today I am taking care of myself.

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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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Respect the Stim

I’m a lifelong fidgeter. I don’t sit still well. I bounce in my seat at times. I rock. I fiddle with a Tangle Jr or my fidget bracelet or my Hufflepuff necklace. I flap my hands. Sitting still is stressful.  Playing with the nearest gadget or toy helps ground and stabilize me.

For me, stimming (which is what we call fidgeting to help calm and ground ourselves or to make us happy) is a way of life. It’s often like the first sunshine after a bitterly cold winter – warmth and comfort and happiness. It’s like the first sip of a perfectly brewed mug of my favorite tea. It’s the feeling of my soft, fluffy cat curled up in my life. It’s like a big bear hug from my favorite person in the universe.

It isn’t meant to annoy you. I can’t just stop because you don’t like it. It’s as natural as breathing, as natural as the in and out, in and out rhythm of air. It doesn’t hurt you, does it? Maybe when you need to calm down, you take deep breathes. You hum or whistle. Maybe you tap your foot. Maybe you visualize things. This is my method. This is my way.

Stimming is my very way of life. It’s the warmth of a fireplace. It’s the comfort of a book I’ve read a thousand times. It’s what makes me feel at peace in a world I often don’t understand. Respect the stim.

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Life as an autistic adult

If you haven’t figured it out yet, hi, I’m Nora and I’m autistic. Breaking news has just reached the Caribou Coffee I’m currently plopped down at and I’m here to announce that autistic children become autistic adults! I KNOW. Novel concept, right? It’s AMAZING! Ahem. Sorry. I’ll lay off the sarcasm. Maybe. 😉

I was once an autistic child. I am now an autistic adult. My needs aren’t the same as they were as a child. But that’s okay. I can do things as an adult I couldn’t safely do when I was younger. I still do some of my stims and fidgeting habits. But I’ve grown. I’ve become an adult. And while I don’t know what it’s like to be a parent of an autistic child, I know what it’s like to be an autistic child.

When I make suggestions to parents, I don’t do it to judge them. I don’t do it to be a butthead. It’s because I was an autistic child once, too. I do it because I hope to help. I speak out because I care and think people will listen. I don’t waste my energy and time on people I don’t think will listen or whom I don’t think I can help.

I speak out because I care. I speak out because I was a child once. We’ve all been children once. Please don’t silence us. Please don’t tell us our stories don’t matter. That you only want to hear from parents of autistic children. We want to help. We want to make things better than what we went through. Give us a chance. And hear our voices.

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I’m more than the labels I don’t choose

I am more than the labels I don’t choose. There are some labels I’m fine with – Hufflepuff, asexual, autistic. I’m fine with this labels. They help me define who I am. They give me concrete terms to tell others about how I am. Terms to help me find people who are safe for me. These labels are like a security blanket, almost. They help me find what I need. Who I need. Get what I need. They help me explain things. For example, I can easily say “because I have anxiety, phone calls are difficult” and “because I’m autistic, eye contact is literally painful sometimes.” I like those labels.

There are also labels I, well, don’t like. I don’t like the labels society puts on me. High functioning. Low functioning (I guess there’s no medium functioning?). I’m not a steak,  y’all. I’m not either rare or well done. I’m also not hot sauce. Why do I have to be mild or  HOT HOT HOT? In many ways, I am on the lower end of so-called functioning. My IQ is crap because I can’t test well. I have dysgraphia and dyscalculia.

I don’t like being called handicapped or a person with a disability. I am disabled. I choose ID first language because while they don’t define me, they are so intertwined into who I am that without them, I would be a totally different person. I’m not a person apart from them. I’m a person who IS them.

When other people try to label me, it feels like they’re trying to define me. It feels like they are trying to make me fit into their cookie-cutter mold. It feels like they are trying to rip away my rights, my dignity, and my agency. It feels like they’re saying what I choose doesn’t matter, but their choice does. While this may not (always, but it sometimes is) their intent, it’s the way it feels to me. I don’t like being defined by other people that aren’t my friends.

Let me choose my own labels. When I tell you I don’t like them and to please don’t use them, please respect me enough as a human being to honor my wishes. Please respect me enough to use the labels I choose, not the ones you choose.

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But Borrowed Time

Handwritten notes that now bring a tear,
Bittersweet smiles amidst Christmas cheer
Inside jokes that bring mist to my eye,
If only I’d remembered,
Those moments were but borrowed time

Firsts in my life becomes firsts without you,
Left all alone when faced with something new
Smiling and laughing, to merely hide the pain
Wishing I could talk with you just once again
If only I’d remembered,
Our moments were but borrowed time

As I learn to grow and walk on alone,
There are so many things I just wish I had known
More “I love yous” and another late night chat,
In the flash of a second, it changed just like that
If only I’d remembered,
That life is but just borrowed time.