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NF Awareness Day 2017

My name is Nora. I am twenty-nine years old. And I have NF type one.

NF, or neurofibromatosis, is a genetic disorder. I was born with it, and I will die with it. The way it affects people is different – it’s what’s known as a snowflake disorder as no two people with it are alike. I only know how it affects me.

I have cold intolerance.

I have heat intolerance.

I get migraines.

I had a tumor….but I am incredibly lucky (or unlucky?) in that my one tumor actually wasn’t NF related. Yeah. I would have had it anyway. Luck. Skills. Or something. I have it.

I can’t regulate my weight.

I live with pain.

My immune system is shit (well, okay, this actually isn’t completely related. One of my doctors once told me my body doesn’t read the textbook…)

I am autistic.

I have ADHD.

I have a balance disorder.

I could go on and on.

There is no cure, no treatment.It’s just how I am. It’s just how I always will be.

I am low vision.

There’s so much of me that is who I am because I have NF.

All I want is treatment.

All I want is relief.

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I am Annora

image is of a pale female brunette. she is wearing headphones and a shirt that says “sarcastic comment loading. please wait.”

When people ask me my name, I give it to them. My name is Annora (or Nora). It’s a big part of my identity. I chose it for myself. Annora is who I am. It’s who I’ll always be. I connect to the name Nora. It describes me, you know? The same way being a Hufflepuff describes me. The same way being Divergent describes me. The same way all my personality traits define me. 

I am also autistic. I’m not a person with autism. I don’t say I’m a person with Nora, that’s silly! Being autistic is as much of a part of my identity as my name.  There’s nothing wrong with my name and nothing wrong with being autistic. They’re both me. They’re both who I am. 

I am tired of people refusing to call me by my legal name and insisting I’m still “old name”. I’m tired of people calling me a person with autism. I’m tired of people calling me differently abled. Why the hell do you get to choose my labels for me? Who said you get to choose how I define myself? The only person who does so is me. I define me. And when I inform you of the proper language to use, it’s disrespectful not to use it. 

I’ve been told, flat out, that I’m “stupid” for changing my name. I’ve been told that I’m being absurd for insisting on identity first language. I’ve been told so many things on both counts. On the labels I’ve chosen for myself. On the labels that make me, well, me! 

I am Annora. 

I am autistic. 

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But I don’t use it for that!

Image is a someEEcard style graphic. Text reads "There are eight ways of contacting me through my phone that don't involve me having to talk to you. Use one of those."

Image is a someecard style graphic. Text reads “There are eight ways of contacting me through my phone that don’t involve me having to talk to you. Use one of those.”

If you know me at all, you know I hate making phone calls. It isn’t laziness and it isn’t something I can really help – it’s a soul crushing anxiety. I have completely melted down when a phone call is necessary. It would be easier if it was pure laziness, because then I could just suck it up and get it over with. But for me, a phone call isn’t that easy. Hell, I have like four or five unread Facebook messages, twenty some not listened  to voicemails, and a few text messages I haven’t even read.

Communication is hard, plain and simple. I have all these words in my head and all these things I want to say, but they just don’t want to come out. And so, I don’t answer messages. I’m not ignoring you. I’m not pretending you don’t exist. I’m just consumed by fear and anxiety. Which is bad, because it’s often important things that fall to the wayside.

It isn’t a skill I can easily learn. I can’t just pick up my phone and respond to a message or make a phone call when I am literally consumed by anxiety. When I am literally incapable of making that call or sending that message. Anxiety is ruthless.

So please, when I don’t respond promptly, or at all, don’t take it personal. It’s just my brain. It’s just how I’m wired.

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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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“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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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 not call me high functioning

Do not call me high functioning.

Many times, in various Facebook groups I’m in, I have been called a high functioning autistic. This is not only demeaning to me, but it is demeaning to other autistics.

Functioning levels just mean that someone is or isn’t good at an IQ test. That’s it. They’re a crappy way to determine worth.

When you insist on calling me high functioning, you are diminishing my struggles. When you insist on calling me high functioning, you are demeaning other autistics. You are saying that I am better than them, which is simply not true!

Functioning levels are not helpful for me. They make things more difficult. They’re used to deny me help I need. “You’re so smart, Nora. You shouldn’t need help with this.” “I have confidence in you, Nora, you can do the thing.”

They’re literally saying that I should be capable of doing things that are impossible. Or that because I can’t do these things, my life lacks worth. I’m not more intelligent than others – my IQ is actually crap because I am incapable of testing well despite being a good student in high school. Give me an essay? I’ll overachieve and write the hell out of it. Give me a test? Meltdown.

When I tell you that inspiration porn bothers me, and you tell me that because I’m high functioning I should celebrate the achievements of other autistics, you are now demeaning to both of us.

So knock it off with functioning labels. Knock it off with “mild” or “severe” autism.  Stop using functioning labels, because they are of no help to me.

Image is of a female with multicolored balloons. Text reads "Stop using functioning labels."

Image is of a female with multicolored balloons. Text reads “Stop using functioning labels.”

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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