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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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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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Well done, Sister Suffragette

Cast off the shackles of yesterday
Shoulder to shoulder into the fray
Our daughters’ daughters will adore us
And they’ll sing in grateful chorus

Well done, Sister Suffragette

No matter how you slice it, it’s a historical seven days. November 2nd, 2016 the Cubs ended a 108 year streak of no title (Go Cubs go, go Cubs go, hey Chicago, what do you say? The Cubs are going to win today!) And on November 8th, we’ll either elect our first female president or our first…. whatever Donald Trump is.

I voted early today. And I had to make a choice. Who do I vote for?

 

I am a Christian. My faith is important to me. I have LGBT friends who I dearly love – in fact, some of my closest friends are LGBT+. How can I vote for someone whose vice president  advocates for horrifying “therapy” for them? How can I vote for a president who wants to deport refugees?

I hear people say they are voting for Trump because he is pro life. First, read this.  And if you are still convinced The Cheeto is pro life, read this.

Who did I vote for?

I voted for Hillary Clinton.

I don’t think she’s perfect. I don’t agree with all her policies. I’m not happy with how the whole email scandal played out. I am  NOT condoning her actions by voting for her.

But this election, LITERAL lives are on the line. LGBT lives. Muslim lives. Any life who doesn’t fit Trump’s every changing whim. Women put their lives on the line so that they have their right to vote. How can I throw that back in their face by putting even MORE lives on the line?

Yes, I could have done a protest vote. Yes, I could have voted third party. But I’m that terrified of a Trump presidency I just can’t. I can’t with a president who has mocked disabilities. I can’t with a president who has such horrific views.

This is one of the most terrifying blog posts I’ve ever written. I’m scared. I’m scared my friends will hate me. I’m scared friends will desert me. I’m scared that I will be mocked over social media. I’m scared my faith will once again be challenged.

But right now, #ImWithHer. Right now, I am hoping that my daughter’s daughter’s will sing in grateful chorus, being thankful that  Donald wasn’t elective. Right now, I am throwing away being meek and mild and doing what in my heart is right.

And that is why I am a Christian who voted for HRC.

No more the meek and mild subservient we
We’re fighting for our rights militantly
Never you fear

So cast off the shackles of yesterday
Shoulder to shoulder into the fray
Our daughters’ daughters will adore us
And they’ll sing in grateful chorus
Well done
Well done
Well done, Sister Suffragette

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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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And We Dance

for nicolas.  january the 13, 1990 – july the 25, 2011

moments of childlike joy
the children’s museum, the science museum
and we dance

 

those nights that we shared
with the little princess and scrubs
and we laugh

those moments you saved my life
hours and hours of prayer
and we weep

we had our disagreements and fade
but you always were my friend, nicolas,
and we care

as the waves of time come crashing
and stop crashing far too soon
and i mourn

i long for the day where we reunite
and we can catch up once more
and i wait

together, no longer in pain
together, with our creator
and we dance

oh, i thought about You the day that nick died, and you met between my breaking. i know that i still love You god, despite the agony. cuz people they want to tell me You’re cruel, but if nick could sing he’d say it’s not true ‘cuz you’re good. cuz he loves us, whoah, how he loves us, whoah how he loves us, whoah how he loves…

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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.

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I am Annora

image is of a pale female brunette. she is wearing headphones and a shirt that says “sarcastic comment loading. please wait.”

When people ask me my name, I give it to them. My name is Annora (or Nora). It’s a big part of my identity. I chose it for myself. Annora is who I am. It’s who I’ll always be. I connect to the name Nora. It describes me, you know? The same way being a Hufflepuff describes me. The same way being Divergent describes me. The same way all my personality traits define me. 

I am also autistic. I’m not a person with autism. I don’t say I’m a person with Nora, that’s silly! Being autistic is as much of a part of my identity as my name.  There’s nothing wrong with my name and nothing wrong with being autistic. They’re both me. They’re both who I am. 

I am tired of people refusing to call me by my legal name and insisting I’m still “old name”. I’m tired of people calling me a person with autism. I’m tired of people calling me differently abled. Why the hell do you get to choose my labels for me? Who said you get to choose how I define myself? The only person who does so is me. I define me. And when I inform you of the proper language to use, it’s disrespectful not to use it. 

I’ve been told, flat out, that I’m “stupid” for changing my name. I’ve been told that I’m being absurd for insisting on identity first language. I’ve been told so many things on both counts. On the labels I’ve chosen for myself. On the labels that make me, well, me! 

I am Annora. 

I am autistic. 

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Accepting Nora-mal

I have both acquired and congenital disability. That means that some of my disabilities I developed as I got older – like Cyclic Vomiting Syndrome and POTS. Others I was born with, like autism and NF. I’m also a millennial. I’m from the age of being told I can do anything I set my mind to. That I have to go to college and get my degree. I was literally told that because I was smart (despite autism, dysgraphia, and dyscalucia), I could do anything. Because I graduated with honors I was expected to do well in college. I ultimately dropped out due to my health, leaving behind a staggering $100K student loan debt.

At various times in my life, I’ve been accused of both minimizing and over-reporting my disability. I’ve been told that I can do anything and that I need to set limits for myself. I’ve been told that the only disability in life is a bad attitude (which you can read about why that’s bullshit here) and that I’m not disabled, I’m “differently abled” (which guess what? THAT’S BULLSHIT!). I’ve also been told, to my face, that because I’m disabled I should aim to be people’s inspiration. That’s inspiration porn, and, you guessed it, BULLSHIT.

Here’s the thing, folks. There’s nothing wrong with accepting I have limits. There’s nothing wrong with aspiring to do things. There’s nothing wrong with just being. It’s okay to try, it’s okay to fail, and it’s okay not to try. I have accepted that I will never have a college degree. No, online college is not an option. No, community college is not in the cards. No, a different school will not be a better fit.

Nora-mal is who I am. Not normal. Not different. I just am. And there’s nothing wrong with just being. There’s nothing wrong with not getting a degree. This is Nora-mal. This is what’s right for me. What’s right for me may not be right for you. You may choose to get a degree. You may not. You may think I’m capable of getting a degree. I’m not. I’m not capable of a degree or gainful employment. There’s nothing wrong with that because that’s just  the way things are.

For me, accepting that I’m disabled has made a difference in my mental health. Accepting that I have limits and that I cannot do all the things I was told I could do. That, for me, is a victory.