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It’s time to listen: A Megapost

Sit down. It’s time to listen.

It’s time for me to do the talking.

I’m done. I’m tired. I’m worn out. I’m exhausted, physically and emotionally.

It’s time for you to listen.

I need you to listen. This is a megapost of important links y’all need to read. So get some coffee (or tea, or hot cocoa, a beer, or whatever the heck your drink is), read the links, and listen to us. Please read them. Please listen to us. I’m tired. I’m worn out. And I can’t do it anymore.

Autism Speaks sucks

I’m not a puzzle piece

Please use ID first language 

And I hate functioning labels

I’m tired of talking about ableism

The cure to autism is eugenics 

And The Mighty mightily sucks

And finally, I’m fed up with your awareness.

Call me bitter. Call me cynical. But the things have been said. Over. And over. And over. Right now, there’s nothing new I can say.

So can you listen?

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silence in a shattered world

It was the day after the election. I had my music on shuffle, as you do. And this came on.

Can you hear the voice of the children?
Softly pleading for silence in a shattered world?
Angry guns preach a gospel full of hate,
Blood of the innocent on their hands

Crying softly, help me
To feel the sun again upon my face,
For when darkness clears I know you’re near,
Bringing peace again

A little too apt.

I’m scared. I want to fix all the things. I want to make things better for my friends. Many of my friends are minorities. Many of my friends are minorities. And I want to help them. I want to fix their fears. I want to make the thing RIGHT again.

And I can’t. I sit here helpless. I sit here with tears.

I wonder when I’ll feel the light again.

The warmth of the sun as I’m sitting here shivering this cold Minnesota morning. I wonder when I’ll feel hope. When I’ll be able to make things right again.

And the not knowing is so terrifying.

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What if I stumble, what if I fall?

Father please forgive me
For I cannot compose
The fear that lives within me
Or the rate at which it grows

If struggle has a purpose
On the narrow road you’ve carved
Why do I dread my trespasses
Will leave a deadly scar

Do they see the fear in my eyes?
Are they so revealing?
This time I cannot disguise
All the doubt I’m feeling

I am scared. There is no way around it. I’ve spent my whole life  scared, really. I’ve been disabled since birth, though the list of diagnosis didn’t begin until I was three. When I was four and I became a childhood cancer survivor, I essentially became untouchable by insurance.  As I got older, the list grew and grew. We expected me to grow out of my disabilities, Instead, I grew into them.

And I’m scared. I’m so very, very scared. I’m outright terrified. I need thousands of dollars of medication a month to live. Thousands. Some of my meds do not exist in generics. I require numerous specialists. Health care reform is a very scary, serious thing in my world. I’m moving in under a week and I’m scared as to just transferring my Medicaid over state lines.

I’m scared my Medicare, Medicaid, and SSI will be slashed. I’m scared I won’t be able to get the meds I need to live. I’m scared I won’t be able to see my specialists. Imagine solely relying on government run programs to live. Imagine that private insurance isn’t an option for you – yes, thanks to the ACA I can’t be turned away due to my medical history, but I can’t afford private insurance and there isn’t a plan that would meet my needs.

I’m letting my fear show. I’m letting my doubt show. And let me. It’s hard for me to be vulnerable. It’s hard for me to be scared. Me wondering where this country is going to go isn’t me being a whiny crybaby, someone who’s feeding into hysteria, or any of that jazz. I rely on welfare to live. I literally would be dead without it. My lifetime health bill is in the several million mark. Do I not deserve to live? Do I not deserve to thrive? Do I not deserve a chance at life?

I  can’t hide my fears. I have to be open. President elect Trump, I need you to listen for once. I need you to know that disabled people like me deserve to live. I know I don’t have a job and you likely look down on me. But you know what I do have? I have a witty sense of humor. I’m loyal. I’m compassionate. I’m passionate about things. I’m fighting like hell against a world determined to pull me down. I’m an advocate. Won’t you give me – give us – a chance? We didn’t ask for this life but we’re living it.

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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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being autistic

i am autistic. it is who i am. it is as much of a part of who i am as my blue eyes, as my pale skin, as my love for orange. it doesn’t change. my sense of humor, my fierce sense of loyalty, it’s all a part of who i am.

i don’t glamorize being autistic. there are aspects that are hard. aspects that suck. but it’s all a part of who i am. do i wish i didn’t have meltdowns? do i wish i didn’t shut down and couldn’t speak? hell yes. but, it’s all me. i just wouldn’t be me without being autistic.

accepting that has been a big part of accepting me. yes, i am disabled. yes, i am autistic. and accepting it? has allowed me to be the person i’ve always known i could be.

for years, i’ve been told things like “you’re too smart to be this dumb”, “you’re a smart girl, you can figure it out”, “i have confidence in you”, “i know you can do this”. but accepting being autistic means accepting there are things i just can’t do, and that’s okay! there is nothing wrong with the fact i am neurodivergent. there is nothing wrong with the fact that my brain is wired differently.

accepting being autistic means accepting there are things that are impossible for me. accepting being autistic means accepting that i have limits. accepting being autistic means accepting something that everyone wants me to reject.

accepting it doesn’t mean that i use it as an excuse. it means that i use it to help explain things. it means that there is a reason why i react the way i do. it means that i’m just me, plain and simple. i’m nora. i’m autistic.

i don’t always like being autistic.

but dammit, i’ve accepted it.

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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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In which Donald Trump is, once again, a buttcow

Donald Trump has, shockingly, once again made headlines. At this point, I seriously expect Asthon Kutcher to pop out and tell us he is epically punking us and trolling us. The latest comments though? While part of me is all “Why am I shocked?” the other part is “Why are you still supporting him?”

If your answer is “boys will be boys”, you are normalizing rape culture. You are saying it is okay to degrade and talk down to and about women. If you say that all men talk like that, you need to find some new men to talk to. If your answer is “what’s the big deal? It’s just locker room talk”, I dare you to look me in the eye, as a sexual abuse victim, and tell me those same words. Because you are literally justifying sexual abuse. You are literally saying that it’s no big deal. and that is not acceptable.

When these words come up in our history books, do you want to explain to your children what they mean? That we normalized them? Is this the world you want your children to grow up in? Do you want to tell your children you voted for someone who is literally normalizing sexual abuse, or do you want to tell them how you fought against him?

Trump isn’t brave for saying this crap. He isn’t edgy. He’s a buttcow, plain and simple. You are literally justifying and normalizing the abuse of women. And don’t give me that “but it was years ago!” crap. He’s shown no remorse. He hasn’t changed.