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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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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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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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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.