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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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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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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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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.

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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.