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Can you imagine?

So many people have told me how lucky I am.

Can you imagine it?

Imagine having all the free time you could dream of. It sounds like a dream come true, doesn’t it? Can you imagine?

But at the same time you’re always tired and never sleepy. You’re always exhausted and you’re either sleeping forever, or incapable of sleeping.

Can you imagine?

You have all that free time and the world is your oyster… but yet you’re in too much pain to pick up the TV remote to turn on Netflix.

Can you imagine?

I have NF1

Today is NF Awareness Day.

Even the city of Minneapolis  has decreed it so.

Can you imagine?

Imagine being fucking terrified every time you go into the simplest doctor’s appointment, because you never know if another surgery is on the table. Imagine your blood running cold the moment your body has decided that one again, you’re atypical and body, you REALLY should read the textbook because you’re doing the things you shouldn’t do and I don’t WANT A TUMOR, dammit!

Imagine it.

Imagine having no cure. No treatment. Just random drugs or surgeries or therapies thrown at your body like a game of Russian roulette. If you’re lucky, it works like a charm. If you’re me, it works with side effects.

Can you imagine?

Imagine over a dozen medications running through your veins to keep you alive. Not pain free – no. You are in pain every day of your life. You don’t know what it’s like to not have pain. Imagine even more comorbid disorders.  Just imagine it.

Can you?

Am I so lucky now?

Am I so blessed to have all these free time when it’s because of my disability?

Imagine being called amazing. Inspirational. Incredible. For doing things that non disabled people do. Can you imagine it? Can you imagine crying yourself to sleep at night, because you’re TERRIFIED of your next visit to the doctor? Can you imagine dreading getting out of bed, because you’ve finally gotten somewhat comfortable but you know the slightest movement will bring all your pain back?

Can you imagine doctors not knowing what the hell you’re talking about, despite the fact your genes are one in every 3000 births? NF is more prevalent than  cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined.

Am I so lucky now?

I would be honored if you made a donation in my name to help fund NF research. Every dollar is matched during NF Awareness Month

If you are an Aussie, you can donate here. If you are in the UK, you can donate here

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Autistics and self diagnosis

I see a lot of bullshit in autism and autistic communities about those who self-diagnose. They try to say that their identity isn’t valid, or that they just must not be autistic enough, or a whole slew a thing. There’s a plethora of problems with this.

First of all, read this.

And now we are going into my personal beef with people who bash those who self-diaganois.

  1. It is classist. Testing is expensive and often not covered by insurance.
  2. The testing is EXTREMELY taxing and emotionally overwhelming. The fallout from testing can be sometimes not worth getting the official DX.
  3. For some. once the official DX is in your medical chart, it can cause doctors to be ableist and ignore other very real problems, brushing it all up to autism.
  4. Getting a DX can literally endanger lives as autistics are more likely to be murdered at the hands of police – even when they know the person is autistic.
  5. It doesn’t stop the “you’re not really autistic” bullshit.
  6. Even if you can afford the testing or your insurance covers it, if you don’t find a provider you’re comfortable with, the testing results may not be accurate
  7. You still could be misdiagnosed and this can be soul-crushing.
  8. You’re still denied either agency or resources
  9. You don’t escape the functioning labels. You’re still labeled as “smart”, “high functioning”, or “mild” and hearing doctors throw around those words in relation to you all the time sucks ass.
  10. It’s sexist. Women are less likely to get the official DX. Not only that, this excludes gender non binary people, which is another problem all together.

 

Next week I will write 10 more reasons why denying people the right and freedom to DX themselves is problematic at best.

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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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It’s prom season

It’s prom season.

Which means soon the media will be blasted with stories. Which means soon disabled people are once again turned into inspiration to make others pat them self on the back and feel like such a good person! Which means once again, disabled people are turned into inspiration porn.

Before you share one of these stories, ask yourself these things:

Is it about the disabled person, or is it to glorify the person who was ever so kind? If it’s the latter, don’t share it.

Is the disabled person actually given a voice in the interview, are they actually spoken to or are they spoken about/around? If it’s the latter, don’t share it.

Would you share it about an abled body person being invited to prom? Then DON’T FREAKING SHARE IT.

As a disabled adult, I would be appalled to find out someone invited me to an event (I’m too old for prom and actually never went) just because they felt sorry for me. I would be horrified to find a media story talking around me or around me but not TO me.

We don’t exist to inspire you.

Have a nice day. Glad we had this convo. Think before you share. Think about the reason you’re sharing.

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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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Ten years ago…

Ten years ago, I was a senior in high school. I had so many hopes and dreams. I had plans. I had ambitions. I had been dealt a pretty crappy hand in life, but I was determined to make the best of it. I was going to graduate, and I was going to kick ass and take names. I was going to get a job. I knew what I wanted to do in my life. I was young. I was naive. I had no idea what was in store. There was so much I didn’t know. But I knew I wouldn’t let my illness hold me back.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

I was confident, and scared, all at once. I was graduating against seemingly impossible odds. I was told how amazing, inspiring, faithful I was while inside, I was falling apart. I was told I had a promising future – I was bright. I was smart. I was bubbly and passionate. Against a world that seemed determined to pull me down, I would prevail.

But that summer, my grandfather died. That fall, I enrolled in college for the first time. Both my physical health and my mental health completely fell apart and I spun so out of control I was asked to leave the college. That was the first time I dropped out of school, and it wouldn’t be the last.

Later on that year, I was admitted to the psych ward for six weeks, going into the beginning of 2007. And then I went to a group home. It was hell. Everything I had hoped for. Everything I dreamed. Gone.

 

Five years ago, I was transferring colleges. I had dropped out one other time and had finally completed classes. However, the college I was at wasn’t meeting my needs. I was preparing for back surgery before transferring colleges. I wasn’t the person I thought I would be. My career path had changed. But that’s okay – part of life is growth, right?

Image is a brunette female holding chopsticks.

Image is a brunette female holding chopsticks.

But that surgery didn’t go as anyone planned. I wound up with more doctors, more specialists, more pain, and eventually another surgery. I was still hopeful. I was still, as I like to say, kicking ass and taking names. I am stubborn and I fight like hell for what I want. This is both a blessing and a curse. My doctors would literally have to threaten me with inpatient treatment if I didn’t skip class because I was so determined to do well. For so long of my life, I had put worth in grades and doing well in school and dammit, this wasn’t something they could take away from me.

But it all came screeching to a halt. Despite modified course loads, despite every reasonable accommodation possible, I dropped out of college yet again. For seemingly the last time. My hope was gone. I was a semester and a half away from graduation. I was so close I could taste it. I could imagine the feel of that diploma in my hand. It was what I had worked toward for so many years… and it was gone.

That brings us to today. I’m sitting at Starbucks sipping an iced Americano. “You Can’t Stop The Beat” from Hairspray is playing in my earbuds. I never imagined that my life at 28 would involve being an activist and an advocate. I never imagined I would find things I’m passionate about. I never imagined that I would still not have that degree ten years ago. I never imagined that my medicine list would be so extensive that I would have a nurse come fill my med dispenser every week because I could not keep up.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

But I am living. I am thriving.  I have a life that I could never imagine. Because of my autism and disabilities, I have an amazing circle of friends I would never have otherwise. Because I am stubborn, I found something else to throw my passions and love into.

Ten years ago, I was eighteen years old and frankly, didn’t know anything about life. I thought I knew it all and was likely a cocky asshole. I knew I would get that degree. I knew I would do well in college in spite of my disabilities, and I cringe at that language now. I knew that my life would turn out just the way I want it.

As the John Lennon lyric states “Life is what happens to you when you’re busy making other plans”. Everything changed. And it is all a beautiful, messy mess. It’s all a part of who I became. And I love it. Back then, I was Angelique – young and naive. But now I am Annora. I am strong. I still have  a future ahead of me. I may not be working in the way I thought I was and I may not be making a difference in the world like I thought I would be – but I am slowly changing my own world.

I am living. I am thriving. I have depression. I am autistic. I have OCD. I had PTSD. I have a list of medical disorder’s that is so long that I have to carry a list. I take so many medications that pulse through my body, keeping me alive. I never imagined this would be my life. But you know what? Because of it, I am thriving. Because of it, I have a great life. Because I am autistic and disabled,  I have a life that is worth living.

My life is beautiful.

My life is mine. It may not be what I thought it was and even one year from now, it may look vastly different. I’ll look back on this and laugh. But this is what it is right now and it’s good enough.

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I am Autistic

When the words are spinning and everything is blurry and fuzzy, I am autistic.

When every sound hurts my ears and pierces my skin, I am autistic.

When I melt down, I am autistic.

When I am stimming, I am autistic.

When I am echolalic, I am autistic.

When I lose my speech, I am autistic.

 

When  I make phone calls, I am autistic.

When I am verbal, I am autistic.

When I am passing, I am autistic.

When I manage to do tasks, I am autistic.

When I self advocate, I am autistic.

When I DO ALL THE THINGS! I am autistic.

 

This is why functioning labels are useless. This is why there’s no such thing as mild or severe autism. This is why trying to fit me into your neat little boxes doesn’t work well.

I am autistic. Always.

When I appear autistic.

When I do not appear autistic.

I am autistic…no matter what.

I am autistic-2

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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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To the person who once lit it up blue 

  
(Image is a shattered blue light bulb with the text “don’t light it up blue. Listen to autistics.”)

To the person who once lit it up blue,

April 2nd was autism awareness day, or something like that. At one point in time, your attitude toward it wasn’t what it is today. 

At one point in time, you believed Autism Speaks was doing good. You may have *gulp* donated to them or you may have shared their propaganda. You may have not realized that their idea of a cure of eugenics and ensuring that we don’t exist. 

You didn’t know better. You didn’t realize that they don’t help us. You didn’t realize they gaslight us. They abuse is. They don’t listen to autistic adults. You didn’t know. 

You may be autistic yourself. You may be a parent of an an autistic child. Or you may be neurotypical. You may have thought tou were helping a good cause. 

You weren’t. 

You didn’t realize you were justifying our abuse. Our murder. Our mistreatment. You didn’t realize that instead of helping us, you were contributing to the problem. 

But guess what?

You learned. You know better. Screwing up isn’t the problem. It’s what you do as a result. You now know that Autism Speaks exists to actively harm autistics. You now know that LIUB is nothing more than an ad campaign for Autism Speaks – did you know that blue has not always been the colour for autism and it’s been the colour for merely barely a decade? Did you know that it was chosen to erase females? Well, now you do. 

You learned, my friend. You grew. You changed. You thought you were doing something good but you learned you were hurting us. And once you learned, you changed. 

That’s what mattered. You changed. You’re now moving toward acceptance. Toward redinstead. You know better now! 

And what matters now is you educate others. You educate yourself. You educate your children. You move forward toward a better future, instead of dwelling on the past mistakes. 

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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.”