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On Julia and awareness

So as any of you likely know, I am obsessed with Sesame Street. I have shirts. Plushes. DVDS. VHS tapes. Soundtracks. Yeah, I like Sesame Street.

So I like Julia, right?

WRONG.

If you haven’t been following along, Julia is an autistic muppet.  And she was created for autism awareness. And there’s the problem.

Julia is about awareness. Not acceptance.

Julia was co-created by someone who calls himself the Autism Daddy. Who calls his kid “king shit” to his face. Don’t give me that “his kid doesn’t understand!” bull. He does. He KNOWS.

Julia is everything that’s wrong with the awareness movement.

Prominent autistic self-advocates have been told to shut up.

That we should we grateful for what we have.

That we are ignoring labor put in by critiquing  Julia

I think some people had great ideas for Julia.

I also think just banking on those is ableist and silly.

I think it’s silly that her puppet master is a parent . Why not an autistic person?

I think it’s silly that they use person first (er, muppet first?) language despite ASAN working with them and ASAN being adamant about ID first.

I think it’s silly that when actual autistic people speak out, we are silenced.

Why do you want to parade us and token us except for when we challenge you?

Think about that.

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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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Abuse is abuse 

As a disabled, autistic person the odds were staggeringly high for me to be a victim of abuse. I am the one in five. I have been physically, sexually, emotionally, and spiritually abused. It is just how it is. I’m finally safe, at age twenty nine. 

Many of my friends have also been abused. And I’ve heard so many of them say that because I’ve been abused “more” or because they’ve “only” been emotionally abused, it wasn’t that bad. Here’s the thing: there is no just for abuse. Abuse is abuse. Full stop. End of story. 

It’s easy for us to say things weren’t so bad. It’s easy for us to say that our abusd was deserved. I know that time after time, I’ve told myself. God, there are still nights where I tell myself that. That I deserved it. But it’s simply not true. 

I bet none of my friends who say they were “just” emotionally abused would turn and say it to a friend. There would tell them their experiences are real and valid. But yet it’s so much harder when it comes to ourselves. 

I’ve been emotionally and verbally abused by my former PCA. 

I was abused in all kinds of ways from my family of origin. 

I’ve been spiritually abused by the church. 

Each one led to my PTSD. Wanna know something? I got the PTSD dx based solely on my emotional abuse history. Before I told anyone about the other stuff. While I suspect I actually have complex PTSD, that is another story. 

If you have been abused, you have been abused. There is no only. There is no just. You were abused. You didn’t deserve it. Nothing you did could have made a difference. It is on them – your abusers. Not you. 

If you were abused, in any way, you are allowed to say so. You are permitted to have feelings. It’s okay to say that you had a traumatic upbringing. Because there is no just when it comes to abuse. 

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Hey folks, there’s no pretty graphic. Because there’s no way to MAKE this pretty. There’s no way to candy coat it. There’s no way to wrap this message up with a pretty bow and make in Pinterest worthy. But we need to sit down and have a Very Serious Talk. Are you ready? Because this is my life. This is my reality. This is the world I live in.

Your ableism is killing me. 

This is not hyperbole. This is not paranoia. This is not me making something out of nothing. Your ableism is literally killing me and the people I love. Right now, I am safe as I sit in my apartment listening to Tori Amos. But 19 disabled people – people like me – are dead. Twenty-five more are injured.

I’ve had people tell me – to my face, mind you, that they would rather be dead than disabled. That people like me are a drain on society. That I don’t deserve to be alive. Because I’m disabled.

We know.

Do not tell me that those people did not understand. Do not tell me that they are in a better place now. DON’T. YOU. FUCKING. DARE. Because you know what? THOSE words are what kill us. THOSE words are what cause caregivers to murder their children. It is not mercy. It is not dignity. It is not okay. Your ableism is ripping our lives away from us. Words like that are why people decide disabled lives aren’t worth living and that we don’t deserve to exist, so people like this man take matters in their own hands.

Don’t tell me how hard it is for those caring for us. Don’t tell  me tell me these things. Don’t you think I know? Don’t you think I’ve thought these same things myself? Don’t you think I’m reminded of it every day of my life? I hear the whispers. I see the stares. They’re seared into my memory.

Ableism isn’t about offending me. If that were all it was, I would shut the hell up. I would quit speaking out against a world that’s determined to pull me down. Ableism isn’t about being politically correct. I see you, and I hear the steaming load of crap you spew out. Ableism is about our LIVES on the line.

And THAT is why I can’t sit in silence.

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“But, autism stole my child!”

One of my favourite feelings is standing outside and feeling the fresh, warm sunshine against my pale skin (hopefully, I’ve remembered adequate sunscreen otherwise I’ll quickly have a VERY BAD FEELING) and a gentle breeze brushing my hair. This is my happy spot. This is freedom. This is joy. This is life. This is where I feel at peace. My mind is fluttering and my heart is singing. I am vibrant and radiant.

And yet. You had to know there was a “yet” or “but” coming.

I get weird looks sometimes. Why? I may be repeating a favourite script under my breath. This just means I’m happy! I may be flapping or flailing, because I’m overcome with joy or I’m overwhelmed at a sound going by. I may be doing my version of a crip-bounce (it ain’t graceful and you don’t need to see it, trust me). The looks. The whispers. The stares. The questions. Because I’m autistic. Because I’m filtering my world in a different way.

“Autism stole my child.”

I’ve heard parents say it so many times. That autism stole their child. That their child is a burden. That they’d rather their child be dead than autistic. But. I value each one of their lives, even if their parents don’t. Even if their entire world is telling them they’re stupid, they’re worthless, they’re burdens, and their little routines of comfort are petty, I’m shouting out at the top of my voice that they’re anything but. When they are murdered by their caretakers, I weep bitter tears for them. I mourn the dead and I fight like hell for the living.

But you know what?

Autism gave me my freedom. Autism gave me my voice. Being autistic is who I am. It’s connected me to a world of friends I wouldn’t have otherwise. It’s helped me interact and understand on a level I wouldn’t otherwise. I’ll be the first person to admit autism isn’t all skittles and sunshine.

There are times that suck, that suck suck suck so much. Such as when I’m clasping my hands over my ears and crying because the neighbors are setting off fireworks. Such as having the words literally trapped inside me and being unable to speak. Such as not being able to wear what I want when I want due to sensory issues. Such as avoiding certain foods.

But at the same time, there’s beauty in it.

And so I say stim away. Flap away. Script away. You aren’t hurting anyone and you’re expressing joy. Or you’re calming yourself. Or it’s comfort. Or maybe you just plain want to. All these options are fine! All these options are valid!

For me, autism is freedom. Autism is life. Autism is who I am.

Image is of green text on a white background and reads "Autism gave me my freedom." On the right side is a green dog in a party hat. Autistic party dog, I guess?

Image is of green text on a white background and reads “Autism gave me my freedom.” On the right side is a green dog in a party hat. Autistic party dog, I guess?

 

(Also, I kept this post family friendly in case people want to share with their kids or younger teens. Do you know how hard it was for me not to swear?! Really… well, I almost swore there, hard.)

 

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I am Divergent

I have been in a reading rut lately. I just haven’t wanted to read. It’s too tedious, too tiring, too much work. For the first time in a really, really long time I have been able to read and enjoy it. I’ve been fully immersed in the book to the point where I can see the beauty of the words, visualize the characters, feel their pain with them. Feel my heart skip a beat in my chest when I get to intense parts. And I’ve missed it. God, how I’ve missed it.

The book is Divergent by Victoria Roth. I won’t go into too many details, because you really need to read the book. But I came across this quote and it struck a chord with me.

 

“Every faction conditions its members to think and act a certain way. And most people do it. For most people, it’s not hard to learn, to find a pattern of thought that works and stay that way.” She touches my uninjured shoulder and smiles. “But our minds move in a dozen different directions. We can’t be confined to one way of thinking, and that terrifies our leaders. It means we can’t be controlled. And it means that no matter what they do, we will always cause trouble for them.”” 

Is this why you’re scared of autistic adults?

Is this why you try to silence us?

You can’t confine us. We speak out against injustice. We cry over the blood of those who have been murdered in the name of mercy. We don’t let you control us.

We kick ass and take names.

We let the bridges we burn light the way.

We do no harm and take no shit.

Does this scare you?

You cannot control us and we will cause trouble for you.

We’ll tell you that we don’t want a cure.

We’ll tell you that you are gas lighting and abusing us.

We’ll tell you that you’re being an ableist dungmuffin.

Are you scared?

In some ways, the “factions” that some autistics grew up in took place in the form of ABA, or autistic compliance training. They tried to make them compliment. They tried to make them fit the mold their parents wanted. Instead, they escaped with PTSD and wanting to raise hell. But because of their noncompliance, they are now speaking out.

Our minds are like having dozens upon dozens of Chrome tabs open. We think in different ways. We don’t always think the way we were brought up and the way we were trained to.

We are Divergent. We are social justice warriors (or clerics, or mages, or rangers, or bards, take your pick).

And we will not be silent.

 

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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.