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April may be over

At long last, April is over. Let me relish in those words: April is over! I don’t think that’s sufficient, but that’s okay.

April is over, and that’s such a relief. But on the other hand, it isn’t. Why? Ableism is still rampant. People still hate me. I’m still autistic and I’m still a marginalized class.

You know what else isn’t over? People literally wanting me dead. People literally not wanting me to exist, all in the name of a cure. I’ve said it once, I’ve said it twice, I’ll keep saying the damn thing – the cure is eugenics.

As long as I’m on the Internet, people will insist on using functioning labels. High functioning. Low functioning. Mild. Severe. “Your autism isn’t that bad.” “You pass as neurotypical.”

Shut the fuck up.

And I’m going to guess that more people are offended by the fact I just dropped the F bomb than the fact I said that wanting to cure autism is literally wanting to prevent our existence.

April is over. Hooray. But you know what isn’t? Autism Speaks. They still hate us. All of us. Every. Last. One. Of. Us. They still want us to be dead. Yes, dead. They still want us to pass. Even when we cannot.

April is over, but awareness isn’t. Paaaarents are still wailing that we don’t know how hard they have it. That we are not like their child. Breaking news in  at 2:05 am central time: your autistic child will become an autistic adult. There is no such thing as an adult child.

April is over. But I am still cyber-bullied for being autistic. Other autistics are still bullied across the internet – in both autistic and autism (there is a distinction, but that will be a future blog post) communities as well as the neurotypical world. People who self-dx are told they are not valid and that their diagnosis isn’t real (even when it very much is and again, that’s another blog post), people with professional diagnosis are told they’re “not really autistic”. And still others will claim that we’re “all a little autistic.”

April may be over. But I still have to write about what it’s like being an autistic adult. I still have to fight for agency and basic rights that a neurotypical person would get without a second glance. I still have to speak up for injustice. I still have to continue being a social justice cleric. There is no rest. It’s still rampant. It’s not in your face and while EVERYONE may not notice it it’s still there and it still hurts. And you know what? It never stops hurting. It never stop hurting, no matter how many times insults like the R word are flung at me. It still stings.

April may be over, but autistic children and adults are still murdered in cold blood by their caregivers. They’re still abused. They’re still subject to abusive therapies like ABA. They’re still told they’re not good enough, they need to pass, they need to stop doing the thing. It’s still happening. You’re just not aware of it. Or maybe you just don’t care, but I’ll pretend that’s not the case.

I am so glad that April is over, but the oppressions are not. YOU just notice them less. (And by the way, GameStop did not stop supporting Autism Speaks because of a petition or they know their fan base. They stopped because April is over).

Image description: purple background with a yellow circle in the middle. Lighter purple text reads "April may be over, but the aggressions never are."

Image description: purple background with a yellow circle in the middle. Lighter purple text reads “April may be over, but the aggressions never are.”

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Do you know what ableism is?

Image is of a pink hot air balloon against blue clouds. Text reads "Ableism is living in a world that is not equipped for me.

Image is of a pink hot air balloon against blue clouds. Text reads “Ableism is living in a world that is not equipped for me.

 

 

Do you know what ableism is? Do you know what it’s like to live your life when ableism is facing you literally every time you turn around? Do you know what it’s like to be disabled in an ableist society? Do you know what it’s like to be autistic in a world that’s crafted for neurotypicals? Do you know what it’s like to be physically disabled in a world that actively oppresses your very existence? Ableism is living in a world that’s not equipped for me.

I am Autistic. Ableism is when people insist on erasing my identity, and calling me a “person with autism”, despite the language I have chosen for myself. Ableism is when people force me to look into their eyes, even when eye contact is physically painful. Ableism is when people judge me for stimming in public. Ableism is when people refuse and try to make me into something that is actually impossible for me, due to being Autistic.

I have major depressive disorder. Ableism is just telling me to have more vitamin C, exercise more, get out more, etc. No! This will not help my depression. What I need for you is to listen to me when I tell you how to support me. Not to scold me for making the choice to be on antidepressants. Not to belittle me for the way I cope.

I am physically disabled. Ableism is telling me to stop seeing so many doctors. To just have a more upbeat attitude. This is not acceptable.

I have cognitive and executive functioning problems. Ableism is telling me to just get over it. Ableism is telling me to suck it up and do it. Ableism is telling me that you believe in me and I can do the thing, even when the thing is actually impossible for me. It isn’t as simple as just getting up and doing it. I actually cannot. I am not wired that way.

Ableism is when parents tell me I am not like their child. That I am so high functioning. Ableism is insisting on using functioning labels, even when I tell you that I don’t like them and in fact, actively oppose them. Ableism is insisting on calling my impairments mild or severe, despite the fact that some aspects are mild and others are severe. It isn’t black and white like that.

These are aspects of ableism I face in my life every single day as a disabled adult. Feel free to comment on what ones you face. I know I’ve missed so many as ableism isn’t a one size fits all and something every single disabled person faces.

 

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Your awareness wants me dead

It’s still April.

It’s still Autism Freakout Month.

I’m still being blasted by blue. I’m still being surrounded by Autism Speaks. Nothing has changed. The same words keep getting thrown back at me.

“I’m not lighting it up blue for Autism Speaks, I’m lighting it up for my son.”
“Blue has always been the colour for autism.” 

Taken directly from the Autism Speaks website: 

“The first question we wanted to ask was – why blue? What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism.”

Blue has only been the colour for as long as A$ has been around. Before that, it was a really freaky looking of a puzzle head kid. Learn your history before you say things.

“But I want to raise awareness for *insert here*”

And my favorite…

“But isn’t all awareness good?”

No. No it isn’t.

Your awareness wants me dead.

A bit louder for those in the back, and with feeling: your awareness wants me dead. 

You see, they support eugenics.

They and their “fans” justify murder.

They think we are burdens and destroyers of hope.

They are just horrible.

Image is of a brunette female with blue eyes and red glasses. She is wearing a flower crown and a pink pokemon t shirt. I don't know why I'm wearing the crown. It seemed fun.

Image is of a brunette female with blue eyes and red glasses. She is wearing a flower crown and a pink pokemon t shirt. I don’t know why I’m wearing the crown. It seemed fun.

Do you know what the cure for autism is?

The cure is eugenics. 

What? Eugenics? Really.

I’ll say it again, this time with a different link.

The cure is eugenics.

Yes, eugenics.

And the majority  of us don’t want a cure.

Look me in the eye. Tell me that my mother should have aborted me or that I literally shouldn’t exist. Tell me that I’m a burden or that my life isn’t worth living. Oh wait, you already have.

Because by saying your child/grandson/nephew is a burden? You’re saying I am one by proxy. “Oh, you are not like my child” when we were once your child. Contrary to popular belief, autistic children become autistic adults. I know, right?

Look at me in my awesome Pokemon gear and tell me that I don’t deserve to live. That at 28, I shouldn’t still love Pokemon and Sesame Street. Dare you. Even if you don’t say it, I’m sure you’re thinking it.

When you say “but isn’t all awareness good?”, you are supporting Autism Speaks by proxy. By denouncing them and still promoting their Light It Up Blue campaign you are still spewing the hatred that Autism Speaks. Acceptance. Your awareness is useless.   Please accept us. We’re fine as we are.

When you keep repeating over and over “But ALL awareness is good!” you are silencing us when we tell you what Autism Speaks means. What they do to us. What they do to your children. When we cry out and scream for acceptance, we mean accept us as we are. Don’t force us to do things that are painful for us to fit your neurotypical molds.

Your awareness wants me dead.

When an autistic child or an autistic adult who is dependent on a caregiver is murdered, it seems it is mostly fellow autistics who weep and mourn the loss of life. I still cry over every one I read but it’s getting harder and harder to cry. One day, it’ll be so common there will be no tears left. I don’t want that to happen. But what happens when these people are murdered? “SERVICES! SERVICES! SERVICES!” “It’s SO HARD raising an AUTISTIC CHILD!” “Walk in THEIR shoes!” “YOU DO NOT UNDERSTAND.”

That is what your awareness screams to me.

When you say people aren’t aware of lower functioning autistics, well, first of all, you should know that functioning labels are a bunch of crap and it’s actually the ones that society insists on deeming low functioning that we hear about than the ones who have learned how to pass in a difficult world. When you say we don’t speak for so-callled low functioning autistics, you’re ignoring the fact that MANY of them do speak for themselves and are happy as they are.

Please stop telling me that all awareness is good.

Please stop telling me that all awareness matters.

Please just stop telling me you aren’t lighting it up blue for Autism Speaks.

Go red instead.

Support Autistic Run places.

Love us and support us as we are.

We’re worth it. I promise.

Please don’t wish me dead.

Thanks.

Neurodiversity Link Up 2017
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How Pikachu Helped Me Accept Being Autistic

This may come as a shock (see what I did there?) to anyone who knows me, but I absolutely love Pokemon. I have multiple games for multiple consoles. I go to GameStop (or I did, before their partnership with autism speaks. I’m hoping they listen to me and sever ties. Anyway) for promotions and events. I have the original and Johto pokeraps memorized. I have over a dozen pokemon t-shirts. You see, I love Pokemon and ESPECIALLY Pikachu. So yes, Pokemon is a big and important part of my life.

 

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Pikachu also helped me accept and define being autistic. You see, in the first episode of the first season of the anime, Ash is given a Pokemon by Professor Oak. It isn’t the Pokemon he wanted and was, well, less than desirable. In many ways, this is how parents feel when they have a disabled child. That their child is broken. That their child is less than desirable. That they didn’t get what they signed up for.

But do you know what happened when Ash found the Pokemon that was given to him? He accepted him. He took him as he was. He decided that “This is the Pokemon I was given, and now we’re going to be partners and take on the world.”

Pokemon are supposed to go in their Pokeballs. It’s just how it works. Don’t ask me why, I didn’t write the storyline. But Pikachu is stubborn and Pikachu refused. So Ash finally accepted Pikachu as he was, and he let Pikachu walk by his side. They became friends. And twenty years later, they still are. Despite the fact that Ash still hasn’t caught all the pokemon and STILL isn’t a Pokemon master… but that’s another story, I guess.

A ten year old boy was able to accept his Pikachu that didn’t fit the conventional mold. A ten year old boy realized that Pikachu had very real access needs – he didn’t like being confined to a ball, he was stubborn at times, and he wasn’t always the best behaved Pokemon. But Pikachu did what Pikachu wants.

I am autistic. I also have an alphabet soup of brain cooties. I don’t perceive the world like a neurotypical person does. In a world that was created for people that are, well, quite frankly, not me, I struggle. I struggle to fit in and I struggle to find my groove. I live in a world where I function differently just because of how my brain is wired. It doesn’t mean there is anything wrong with me. Some of my brain cooties are because sucky things that shouldn’t have happened happened, and my brain did what it could to protect itself at the time. Some are because of genetics. And some are just because my brain does what it wants, and not what I necessarily want it to do.

But like Pikachu, I wasn’t anyone’s first choice. Like Pikachu, I was unconventional.  I had my own way of doing things and no matter how hard you tried to force me, I couldn’t do it any other way. But Pikachu taught me that that’s okay. That I can still make a large group of friends. That I can still find someone who will stand at my side. That I can still have people who will be my companions.

And that is why Pokemon isn’t merely a kid’s show. Pikachu helped me accept myself.

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I’m fed up with your awareness

I have completely and utterly had it with your awareness. I am absolutely fed up with your so-called awareness and I would love to shove it into a meat grinder. Your awareness has done nothing good for me and it’s time to STOP. I am done with your awareness. I don’t need it anymore, and to be frank, I never needed your awareness.

I am fed up with your puzzle pieces, which have a history before Autism Speaks took them over. Learn our history (I am imperfect myself and am still learning our history. I’m always learning. It’s part of being. Learning is good. Please learn. We cannot change and grow if we don’t grow).

I am sick and tired of your awareness! What good has your awareness done? Nothing. It’s justified the abuse  of Autistic children. It’s used for your bull-hockey functioning labels  It’s used to further silence us. To tell us that we aren’t enough. That we need to try harder. That oh, if we Do The Thing, we can Do The Other Thing that we actually want to do.

I am absolutely fed up with your awareness. I am sick of you lighting it up blue. You aren’t doing a single good thing for me by doing so. In fact, you’re justifying my abuse and my murder. You’re justifying the mistreatment of my Autistic family.

Do I seem angry? Do I seem bitter? That’s kind of my point right now. That’s kind of my purpose. I am angry. I am bitter. I am sick and tired of whenever I criticize Autism Speaks, whenever my friends and fellow advocates & activists speak out of the dangers of them of hearing the same rhetoric over and over. “But isn’t all awareness good?” “But we’re raising awareness!” “We’re all working for the same cause!” “I want to do whatever will help my child.”

Your awareness has achieved nothing. Your awareness is hurting me, not helping me. And do you want to know why I don’t want your awareness? I will spend the entire month of April completely depleted of spoons. I will spend the entire month of April seeing people “lighting it up” for “autism awareness.” I will spend my entire month hearing how AWFUL autism is. What a TRAGEDY my life is. How HAAAAAAARD it is to raise an autistic child. Parents will bully and abuse me. Aspie supremacists  will tell me what an awful person I am as an activist and an advocate.  I will continue to see parents moan and whine about the fact their child will never use their voice box to speak – all while ignoring the fact their child’s voice is speaking to them loud and clear. Day in and day out, with no escape. My feed will be flooded.

Your awareness has only hurt me. How are you helping me? If you want to help advocate for me as a neurotypical, great. But shut up and listen to me when I tell you you’re doing it wrong and quit silencing me. Stop being aware of me and accept me. Stop trying to change me. Stop trying to make me into something I’m not.

And for the love of cheeseburgers, don’t light it up blue or I will crutch whack you.

Image: a beach-y background with the white text that reads "Stop being aware of me and start accepting me."

Image: a beach-y background with the white text that reads “Stop being aware of me and start accepting me.”

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Ah, labels, again

Image is of a background with clouds. Text reads "I am not functioning. I am living."

Image is of a background with clouds. Text reads “I am not functioning. I am living.”

 

Today and yesterday I was “high functioning.”

I made phone calls. Scary phone calls – to the bank, to my student loan company. I went to Walmart. I’m high functioning, you see. I went to the Sprint store because my cell phone wouldn’t activate and you know, it’s kind of hard to make phone calls without a functional phone. You would have no idea how hard I was working at being high functioning and passing in a world that’s equipped to speak out against me.

I see so many things on the internet about being high functioning. Functioning labels are bullshit and I think they need to be eradicated. They don’t help me define myself, but rather help others define me. They don’t help me get services or agency, rather they deny me service and agency.

You know how I mentioned I was “high functioning”?

Later that same day, my PCA had to make me food for the weekend to freeze so I can actually eat. Because I cannot use a stove by myself. That’s right, the same “high functioning” person cannot use a stove without serious risk of injury to myself or my apartment. I’ve melted a blender and set fires. I wore children’s shoes with velcro because I couldn’t tie my shoes that day. I played with the rubber coil bracelet I always wear on my right risk.

And today, after more phone calls, I am now non verbal. Talking isn’t possible. I can type and communicate, but my “signs” are more severe. The truth is autism is exhausting.

The world calls me high functioning. Parents say “you are not like my child” even though I was once your child and your child will someday be me. I have very real struggles and very real issues. I don’t hate being autistic. I don’t think autism is evil. But it doesn’t change the fact they are very real, and very annoying struggles. It doesn’t change the fact that I need supervision – I will literally walk into things or people unless I have someone telling me “hey, watch out!”. I can’t use a stove. I can’t do many executive function tasks.

I would love to be able to eat whatever food I want. But I can’t. I would love to be able to talk whenever I wanted about what I wanted but the words literally become stuck inside me and there’s no way to pick them out. We are like your child. We have experienced things your child has. But when we try to speak out, when we try to say anything, you shut us down. And you are helping your children internalize the message that their autism is something to be ashamed of. That they are lower functioning and that their lives aren’t worth living. That they are burdens.

What I need isn’t your labels. Your labels help you define me, not help me define myself. What I need isn’t for you to tell me what my functioning is. What I need for you  is to listen when I talk to you. What I need for you is to accept me. I don’t need your awareness and I don’t need your labels. All your labels do is dehumanize me. All your labels do is tell me how you expect me to live up and the standards you keep me to. Despite the fact that countless other autistic advocates, dozens upon dozens of activists, and myself are telling you how harmful these labels are, you insist on using them.

Please stop.

Today and yesterday I was high functioning.

Right now, I am low functioning.

But the truth is, I am neither and that’s acceptable. I am living.

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More than a choice

“I could never do it.”

When your options are to fight like hell against a world that actively oppresses your existence or to sit in solitude and silence, I choose to fight.

When your options are to join hands with fellow activists and advocates to make a difference in a bleak, dark world or to sit on the sidelines, I choose to join hands.

When your options are to call people out on their ableism – be it passive or active or allow another victim to be hurt, I choose to call you out.

When your options are to kick the hell out of everything that kicks the hell out of you or to allow the kickers to continue to kick, I choose to be the one kicking.

I say “choose” like it’s a choice. It isn’t, really, It’s something I just did. It’s something I threw myself into. I didn’t do it to make a name for myself. I didn’t do it because it’s fun, although sometimes it is! I didn’t do it to make friends, although I sure as hell did. I did it because the alternate wasn’t appealing.

I live in a world where being autistic is actively oppressed. Stop doing this thing. Start doing that thing. You’re embarrassing me. Make eye contact (I don’t care that it physically hurts you and it isn’t possible! LOOK AT ME!). Your interests aren’t valid. You’re not like my child. But you’re so high functioning – despite the fact I lack the executive function to wash a dish or to safely boil a pot of water (seriously, I once melted a blender. It was sort of epic).

I live in a world where people think I’m a drain of society. In any given years, I rack up tens of thousands of dollars in medical bills that could be better spent on “healthy people”. I take dozens of medications a day. I have a list of disorders that makes doctor’s eyes fall out of their head when they see the sheer length and it seems it’s added to monthly. I live in a world where my access needs are not meant, and that’s considered okay.

As long as I live in a world like this, I really don’t have a choice. You tell me that you could never do it.

But I could never not.

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Labels, Labels, Labels

Ahhh, labels. It’s a messy  subject. Recently, I wrote a blog post about liking my labels. I have also written one about how functioning labels are bullshit. This has confused people, because some people see it as embracing my labels one week and rejecting them another.

Labels are useful when they define me. Labels are not useful when they help others define me. For example, I choose autistic and Hufflepuff. They’re very much who I am. They’re a part of my core, a part of my operating system that cannot be changed. I embrace them because they help me declare who I am.

Functioning labels help others define me. High functioning, low functioning, severe autism, mild autism – they’re all just words other use. Sometimes to deny me services – since I can “coast along” and get by, I am denied supports and help I need. They are used to commit insurance fraud and get children ABA, which is abusive. ABA is not acceptable, and it is why many people use functioning labels.

 

By calling my autism mild, by saying I am high functioning, you are not only insulting other people on the spectrum, you are insulting me. You are feeding me into ableist constructs.  You are attempting to silence me, by saying my voice and my story does not matter. Even though many days, I am not capable to use the stove alone. Sometimes, I’m not capable of leaving the apartment alone. Some days, I cannot talk. Some days, I can. Some days I just sit and stim quietly all day. Other days, my mouth runs a million miles a minute.  I am not just on one static place by being autistic. I am many places. Screenshot 2016-02-19 19.28.30

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I am not a tragedy or an inspiration

I am not a tragedy. There is nothing tragic about my life. I am disabled. I am autistic. And you know what? It’s all a part of who I am. It isn’t tragic. It isn’t a horrible fate. And no one is my voice. No one but me. Even when I lose my verbal speech. The only time I do not have a voice is when you try to silence it. The only time I am voiceless is when you refuse to listen to my atypical speech.

I am not a tragedy. I don’t suffer from autism. I am not a person with autism. I am an autistic female. Autism runs through my veins. It’s very much a vital part of my personality. It is as crucial to my personality as the fact I’m a sarcastic asshole and my affinity for puns. It’s just not something I can easily change. And to be frank, I wouldn’t change it. Of course there are things I hate about autism. It isn’t all sunshine and rainbows. But at the same time, to love myself and to hate my autism – like so many parents claim about their children – would be to hate the very core of my being.

I am not a tragedy. My disabilities are not tragic. Sometimes they suck – getting sick so easy sucks. Having disabling migraines suck. Being in pain all the time sucks. But you know what? Some very good, very not tragic things have happened as a result. I have an amazing circle of friends who would move hell and high water for me. I have friends who have done little things for me, just to make me smile or to hear my laugh. I’ve made friendships I wouldn’t have had. Is the fact I’m a college drop out tragic? Absolutely not. I am simply making the best of my situation. There is nothing tragic about it. The only tragedy is people who try to silence me, because they think I should be a good little crip.

I am also not your inspiration. I do not exist to inspire. I do not exist to teach you. I do not exist to make your life better. There’s nothing inspiring about me doing my famous hobble-hop on days when I don’t want to use my crutches or walker. There’s nothing special about me being able to balance crutches and a cup of steaming hot coffee (well, okay, it is kind of impressive I don’t spill it down my shirt, but that’s because I’m an absolute klutz not because I’m a crip).

I am not your inspiration. I am not inspiring because I simply go about my daily life. To call me, to call your child, to call your sibling an inspiration just because we’re disabled and for going around our days is ableism, and turning us into inspiration porn. Don’t do the thing. Don’t demean us. Don’t objectify us. Don’t tell us that we exist to inspire, that we exist to teach. We don’t. We exist to life our lives.

I am not your inspiration. I am just like you in many ways. I love Firefly and Doctor Who, the Avengers and Pirates of the Caribbean. I’m snarky, sarcastic, cynical, bubbly, and happy go lucky. I am a mix of Luna Lovegood from Harry Potter, Kayle from Firefly, River Tam from Firefly, and Silica from Sword Art Online. I just have disabilities.

Do not turn me into a tragedy.
Do not turn me into an inspiration.
For I am none of those.

I’m simply Nora.