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.

Autistic Burnout

I am burned out.  I am tired. I am weak. I am weary. I am completely depleted of spoons.

Autistic Burnout is a very real problem. Burnout is what happens from years of passing. Years of floating through and coasting as a neurotypical. And right now, it’s where I am. Right now, I am burned out.

I spent my school years pretending to pass. Pretending to be normal. Even though I’m a 2E kid, I still passed.

And all these years of passing are taking a dangerous toll.

Years of passing have lead to regression. To me losing my words more and more often. To me going into sensory overload more and more often. To my already shit memory being even more shit than usual.

I’m losing my coping skills. I’m regressing to a world of watching Pokemon, Agents of S.H.I.E.L.D, Sailor Moon, and Captain America: The Winter Soldier. I’m escaping to a world of video games. I’m pulling away in some ways. I’ve tried so hard to pass as neurotypical and it’s becoming more and more evident that I cannot. That it’s not in the cards.

Autistic burnout is scary and tiring. I’m exhausted, but I cannot sleep. I’m always sleepy and yet never rested even when I sleep for hours on it. It even takes a toll on my physical health as I am weak and wary. I have nearly three decades (I’ll be 30 next year y’all) under my belt of faking it until I make it – but that’s come at the toll of my own health and my own life. I’ve always fully thrown myself into everything. I’ve always taunt myself how to cope. I’ve always acted like I’m NT, even when I’m so obviously not. Even when being Autistic is who I am.

I am burned out. I am regressing.

And while that’s not ideal…

for now, it’s okay, because it’s where I am.  Perhaps it means I can’t volunteer right now (I am unable to work for non-Autistic reasons and am totally and permanently disabled. It’s not bleak, it’s not hopeless, it’s just the fact) and perhaps it means I have to withdraw from advocacy to take care of myself. Pulling back sounds silly when I’m a baby newbie activist and advocate, but taking care of myself is important. I can’t help others if I can’t help myself (I’m not though – throwing myself into being an advocate is one of the few things giving me joy despite burnout).

Burnout is real.

Pretending to pass is dangerous.

And this is why I’ve had enough of your awareness and it’s fucking time for your acceptance.

 

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.

Laziness

Right now, if you could see me, you likely wouldn’t hesitate to call me lazy. I’ve got a sink of dirty dishes. There’s a bit of clutter on the floor. I’ve got my laptop propped up on my legs as I lay in bed watching Pawn Stars on Hulu. I’ve not done anything productive today despite having a laundry list of people to call and places to email. I have so much stuff I should be doing, but quite frankly, I’m not.

To the outside eye, I’m lazy. I’m capable of picking up my PS3 controller and playing a game, or booting up my computer to surf Facebook. Surely, if I can do these things, it means I’m lazy for not doing the others, right? Surely, if I am able to make a cup of coffee (which I actually failed in doing today. Yeah, I can’t even successfully make coffee. Go team Annora), I can safely cook food, right?

What about getting single serve foods? I admit to buying prepackaged foods because they’re easier to cook and there are less dishes. I get backlash for this – it’s so bad for the Earth! It’s so lazy! But what is worse – doing something that makes my already difficult life a bit easier, or merely not eating? Because, as absurd as it sounds, that’s often what it boils down to.

But I don’t know that I agree that it’s laziness. To you, it looks lazy. As I sit in bed sipping my Diet Pepsi, trying to get my ADHD brain to be less zippy, munching on pretzels because I don’t have the energy to get real food… it looks lazy, right?

But in really, it’s executive functioning problems. For me, it isn’t as simple as just saying “OK, I need to call the social security office and I need to email my case worker.” I have to write up a script and come up with possible scenarios. I have to brace myself because I have a fear of phones. I cannot just suck it up and do it. By doing this, I am developing autistic burnout and pretending to be neurotypical. And as a result, I am unable to get anything done. I try to barrel though and pretend I’m Super NT Girl and can handle it all, but the truth is I cannot and unless I do things my own way at my own pace, I burn out and nothing gets done.

I don’t know that I truly believe laziness is a thing. Lack of motivation? Maybe, but I think that’s because of outside factors. Depression, anxiety, illness, etc. I want to do things. I want to be productive. But the simple truth is, I can’t. I’m not lazy for taking things at my own pace and doing them my own way.

I’m simply me.

If the fact I’m calling it porn bothers you….

If I say the words inspiration porn, what offends you more? Does the fact that disabled people are objectified bother you, or does the fact I call it porn?

Porn is a deliberate word choice. The late Stella Young addresses it here, and you can also read it about here, here, and here. That should cover the bases quite well and give you plenty to think of. So why am I writing my own post when there are so many out there?

Because lately, I have seen a lot of comments that we shouldn’t call it porn. That is what’s offensive. People aren’t upset about disabled people being objectified.

Want to know things that have gotten me called inspirational, so-high-functioning, etc? Well, you’re in for a treat!

 

You see, the AMAZING AND INCREDIBLE NORA, who is SO TALENTED, once got a Dr Pepper from the freezer at Walgreens. I know. You are kneeled over with shock. That is, my friends, inspiration for a young lady with crutches to get a Dr. Pepper. No, I’m not inspirational. I just haven’t had my daily caffeine and the true inspiration is me not going kung fu crutch on your butt.

I’m called inspirational because I graduated high school despite major disabilities.

I’m called inspirational because I attempted college. No one seems to realize I’m a drop out…

Inspiration porn is a problem. We are treated as objects. Like we’re just here to stroke your good feelings. It doesn’t matter that it’s day to day life for us – walking to the library to pay a fine (I really have no excuse for my library fines considering the library is literally a block away, but you know, so high functioning) is inspirational. Brushing my teeth? Wow, you’re so inspirational, Nora!

People (general) treat us like objects. The things they do? Oh, they’re just day in and day out. But because I’m autistic, because I’m physically disabled, it takes a whole new spin.

I have been told, to my face, that the point of being disabled is to inspire others.

That I shouldn’t complain about my disabilities, because others have it worse.

That I should be grateful I just have pain, and not tumors.

This is ableism and this is inspiration porn.

The single biggest problem with inspiration porn though? So often, the voices of the ACTUALLY DISABLED PERSON are left out. They are silenced. We hear about how much they inspired others. About all the good things someone else did for them.

BOY TAKES AUTISTIC SISTER TO PROM!

GIRL WITH DOWN’S SYNDROME SHOOTS WINNING BASKET!

PHYSICALLY DISABLED TEEN RUNS MARATHON!

AUTISTIC WOMEN DECORATES CAKE!

It goes on. And on. And on. But.

We hear the voices of their friends. Their parents. Their doctors. The people who did the “good thing” for them out of “pity”.

And our voices are left silent. If we protest, we’re told to “shut the fuck up”, because we should be living to inspire.

Look, I happen to personally think I’m a pretty badass person. I’m sarcastic, cynical, snarky, but also a loyal Hufflepuff badger. I’m stubborn as hell and don’t you dare tell me I cannot do the thing, or I will do the thing simply to prove you wrong. Even if I wind up hurting myself in the process, I will do the goddamn thing because it has been hammered into me to not let me disabilities hold me back. Even when it is not feasible for me to do the thing. It’s dangerous, but I do it because it’s what’s expected of me. And that’s fucked up.

But I’ve been taught from a young age that it’s my job to be an inspiration. That if I choose to do things, I can. And that the only disability in life is a bad attitude.

Let me break it down to you.

I can smile all I want at the stack of dirty dishes, but it won’t change the fact the hot water will cause me to pass out, the soap will cause my hands to break out, my hands won’t be strong enough to hold the dishes and I will drop them. I can kick your ass at Super Smash Brothers, and I can play Super Mario RPG: Legend of the Seven Stars with my eyes closed, but dishes? Nope.

 

Frankly, expecting disabled people like me to be happy-go-lucky all the time is pretty messed up. We don’t expect able bodied people to be happy all the time. While I am a pretty bubbly, happy go lucky person often, I also have a wicked bad attitude. And you know what? That’s okay. Stop objectifying me and expecting me to be happy all the time despite my disabilities. My disabilities fucking suck. It sucks living in pain 24/7. It sucks having CVS and throwing up constantly. It sucks having POTS and suddenly being a Nora-puddle on the kitchen floor.

What are you the most upset about?

Are you upset that I called it porn or are you upset that I’m being objectified? Perhaps if my word choice is what is upsetting you the most, you’ve got something to learn.

Dissecting Your Ableism

“But you’re so smart, Nora!”

“I know you can do it!”

“You are so capable.”

“Just believe in yourself!”

“You can, you can!”

“I believe in you, why don’t you believe in yourself?”

In middle school and high school, I was your stereotypical smart kid. I took an entire extra semester for fun (which I eventually had to take a health withdrawal and drop down to two classes taken from home, but that’s beside the point). I took world history for fun. I got excellent grades, scholarships, and took honors classes. My test scores didn’t reflect this because due to the combo of being autistic, ADHD, dysgraphic, and dyscalculic. Tests are my enemy. I am incapable of testing well.

But despite having straight A’s my freshman year of high school, here I am at age 28. No job. No college degree. No exercise. I spend my days needing help getting my basic needs met  – laundry, dishes, med set up, food cooking, cleaning, etc. I’m barely capable of getting out of bed most days. And I have heard every one of those phrases at the beginning of the post. Let’s break them down, shall we?

  “But you’re so smart, Nora!”

Okay, stop right there. First of all, how are we measuring “smart”? My IQ is actually on the low end due to the aforementioned piss-poor test taking skills. Am I smart because I have really good reading comprehension? Because when I am stressed out in school, I either fully throw myself into my work or slack off? What does being “smart” in school have to DO with my day to day life? Woo hoo, I knew how to get good grades in middle and secondary school. Go team Nora, have a shiny gold star. But that doesn’t mean I know how to get a job, how to hold down a job, how to get through college, and how to function in the world. And that is SUCH a belittling phrase. What if I wasn’t smart? What if I struggled in school and flunked out? What would that mean? Why are you measuring my worth by how I did in school over a decade ago? It’s kind of a shitty thing to do.

“I know you can do it!”

Oh. So you’ve climbed into my brain? You’ve seen my extensive medical chart? Stop right there, you’re being ableist. You have NO FUCKING WAY of knowing how or what I can do. You aren’t being empowering, you aren’t being encouraging. You’re being an ableist asshole. I cannot do many ADLs (activities of daily living). I rely on others to get by. Just because you THINK I should be able to do something myself (cook food, do dishes, etc) doesn’t mean I can. Want to know what happens when I do my own damn dishes? My hands break out. If I wear gloves, my hand still break out. I drop and break dishes. I burn myself with the hot water. I pass out from the heat of the water. My hands cramp from hyperextending or I sublax my fingers. Or I get distracted and wander away. I am not lazy because I do not do my dishes. I cannot do my dishes. By saying “I know you can do it!” you are saying my struggles are not legitimate. And who are you to judge what is or isn’t a struggle for me?

“You are so capable.”

Why yes, yes I am. I’m capable of setting fires and melting blenders. Of falling asleep with the candle burner on. Of burning toast. Of turning my tuna casserole into a lethal weapon. Of passing out in the shower. Of face planting! I am capable, thank you! I’m capable of hiding in my room for days. Of burrowing under my blanket fort. I’m capable of scripting entire movies (Labyrinth and The Lion King, I’m looking at you), while forgetting to eat dinner. I’m capable of memorizing entire episodes of The Muppet Show or Fullmetal Alchemist, while not being able to remember what day my doctor’s appointments are scheduled. I’m able to remember my friend’s schedules perfectly, all the while struggling to remember to take care of myself. So yes, I am capable. I’m also capable of calling you an ableist butthead for assuming just because I can play video games, I am capable of cooking food or doing my dishes. I mean, what? Cognitively and physically, they aren’t remotely the same.

“Just believe in yourself!”

Oh. So I’m just a small town girl, living in a lonely world? Oh. Wait. That’s not what you meant, is it? I can believe that I am 5’7 and it’ll happen, but quite frankly it won’t. I can believe that one day my body will produce the correct amount of immunoglobin so I’m  not constantly sick, but it won’t happen. So I can’t just believe I can get a job, do the dishes, cook my own food. My skills are shove food in microwave, push buttons, shove food in face. No amount of believing will change that. No amount of believing will allow me to pass math without extensive help and quite frankly, a miracle. No amount of believing will permit me to hold down a job because of all the time I would need off, the days I couldn’t make it in, all the appointments, etc.

“You can, you can!”

So, is there something you’re not physically able to do? Maybe you cannot, for the life of you, open a jar. Maybe you can’t drive a car. Maybe you can’t reach the top shelf or the top of the fridge. But because you’re able bodied, that’s okay, you don’t have to set your mind to it. You find someone to help you, right? So why, may I ask, am I expected to do things that are PHYSICALLY IMPOSSIBLE? HOW is just setting my mind to it going to make a difference? Newsflash: It isn’t. Everyone has things they can or cannot do. I can’t set my mind to being able to cook safely by myself on the stove. I can’t set my mind to being able to do the dishes. It is, literally, impossible for me.

“I believe in you, why don’t you believe in yourself?” 

Well, okay, I do believe in myself. I believe that despite being disabled, I can still make a difference somehow. I believe that being autistic isn’t something that needs to be cured or changed. I believe that I can be an activist and an advocate, all while sitting in my living room under a very fluffy cat. I believe that the bridges I burn will light the way, and I believe that I shouldn’t be quiet, but I should instead raise hell. I believe that I am funny, affectionate, and loyal. Just because I don’t believe what you believe, doesn’t mean jack shit. So leave your ableism at my door before entering my apartment. Don’t tell me you believe I can do something because you don’t want to do it for me or think I can yourself. Believe all you want, but don’t force your beliefs on me.

 

We need to stop saying ableist phrases like this. We need to, instead of forcing people to do things that are difficult or painful, support them. I can’t open a jar or cook on the stove, but I can make you laugh. I can be a loyal friend and if you activate Nora!Rage or Loyal!Nora mode, watch out, world. Stop telling me what I can or cannot do and instead, support me as I am.

 

In case you can’t tell, this is inspired about a very certain situation regarding PCAs and home health workers. Since this is a public blog post, I am leaving it vague on purpose. 

To my older self

Dear Annora,

You are ninety years old. Ninety! Right now, you are sitting in a doctor’s office waiting for your lost iPhone to be returned to you. iPhones. Funny, huh? Remember those? Remember how you were attached to it? Remember how lost you felt without it? Seventy-two years ago feels so long ago, and yet so near. You remember the sights and smells from the doctor’s office and the taste of your cherry coke. You remember everything but you can’t remember to tie your shoes. Look down. They’re either tied or slip ons, aren’t they? Sure are. Just like now.

When you were twenty-eight, things were so different. Doctors mocked you. Doctors laughed at you. Nurses tried to kill you. People told you were were faking your illnesses. How does it feel to still have them at ninety? I know you’re alive. You’re alive and kicking ass. How many people have you crutch whacked by now, anyway? How many cats have you had? How many friends have you lost?

Annora, you never outgrow your video game addiction. Have you caught all the Pokemon yet? That’s a pretty admiral life goal, you know. Do you still watch all the Marvel movies? Are you still best friends with Anna? Do you still miss Beth with all your being? How many more friends have you lost? How many anime cons have you been to? How many times has someone told you you’re too old for Sesame Street and Blues Clues and how many death glares have you given?

Oh, sweet Nora. You are still chronically ill. It’s something you will never outgrow. The person you are at 28 is fighting for the person you’ll be at ninety. She is fighting for your rights. She is being the voice for the voiceless. Even though she’s scared shitless, she’s launching herself more and more into being an activist and an advocate. She’s so fucking shy and timid right now, but she isn’t shutting up. You’re ninety now, you likely aren’t being quiet either. People aren’t listening to you in the past because you’re only twenty eight, you’re small for your age, and you’re disabled. But you’re fighting and giving them hell. As Chris Crutcher once told you, you’re kicking the hell out of everything that kicks the hell out of you.

You’ve been published. Your memoir is a New York Times Best Seller (okay, I’m kidding. I’ve not even gotten the first page written at age 28 but dammit it will be published by the time I/we are 30. And people read it. They laughed, they cried, they rejoiced with you.

Nora, your life as an advocate has cost you friends. But you’ve also gained them. You’ve gained the most incredible friends you can imagine.. You’re appalled now that people once thought autism was a character flaw, something to be cured. Things are different now (well, not all things: you still crack “that’s what she said” jokes, much to “kids these days” horror).

But, my precious Nora, you love the life you lived. And the life you are living. You aren’t dead yet.

You’re getting better.

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

Spoonie Terms 101

Becoming  a member of a spoonie, or chronic illness community , can be overwhelming with all the jargon and lingo. So I’ve created a document to help you navigate your way through it. There are helpful links, etc. This was originally written for the Spoonies Without Judgment  Facebook group, and feel free to join if you’re looking for a place to call home. I help admin there and we don’t bite. Well, not too hard. Hee.

Terms:

Ableism: Stella Young said it best in her TedTalk. Basically, if it’s not something you would say to someone who is currently able bodied, don’t say it to someone with a disability. This blog post of mine sums up the problems with ableism and why it’s currently a problem. Not to toot my own horn, but I think it’s pretty stinking good!

Ablesplain: I’m just going to pull out a quote from this link because it says it far better than I could:

“In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.”

Aspie/Autie: Slang for an autistic person. Some people like these terms, some people don’t. Choose to use them if you want, choose not to use them if you want.

Brain fog: “Brain fog”, also know as “fibro fog”, “pain fog” or “med fog” is the feeling when pain or meds make it hard to think. It kind of feels like you’re swimming through pea soup or mashed potatoes. You forget things easy, mix up terms, say the wrong thing, etc.

Bump: Boosting a post up if it has no replies or not a definitive answer. This helps it to come back up.

CW/TW: Content warning or trigger warning. A trigger warning is something that could case acute distress such as types of abuse. A content warning is something that may trigger a phobia and is considered more of a “heads up” than an actual trigger.

Crip: Slang from cripple. Many have decided to reclaim it as their own word and to use it for themselves. The choice is yours to use it or not. Do not use it as an insult – such as “you’re such a crip!” in a cruel way. However, it is often used in a tongue-in-cheek way such as “crip perks”, etc.

Flare: A flare is an acute acting up of your chronic illness. So, if you see someone saying “I am having a fibro flare” today, it means their fibro is currently acting up.

Gimp: See “crip”. Just another word for the same thing.

Image description: An image description is telling someone what’s going on in the picture. This is used for low vision/blind people, screen readers, low bandwidth, etc. If you aren’t sure how to write one, read this. It’s also perfectly okay to ask for help!

Muggle: Muggle is just a term we use for non-spoonies. It’s usually used in a tongue-in-cheek way or in jest.

muggle sick: “normal people sick”. So, if you have a cold, you’re “muggle sick”.

Signal boost: A signal boost is posting something in a group or on your timeline that needs attention. For example, a couple years ago there was a recall of epi-pens (something used for people who have severe allergies). People would post them with the words “signal boost”, meaning it’s important and something should read and share, even if it doesn’t affect them directly. This is mostly done for allergy warnings, med or food recalls, or things that could threaten a life.

Spoon debt: Reaching into your spare “spoons”, or energy, to do something but it means you won’t have said energy or spoons tomorrow. It can be near impossible to catch back up.

Spoonie: Taken from the spoon theory A spoonie is merely someone who suffers from chronic illness.
Painsomina: Pain + insomnia. AKA a living hell. You can’t sleep because of pain, even though you’re SO freaking tired.

Why I’m An Activist

Sleep evades me. I’m tired. I’m cold. I’m hungry. I’m weak. I’m feeble. I’m so very wary. I’m sick. I’m currently flopped on the floor, curled up with my security monkey, Zeke, and one of my fuzzy blankets. The only sounds are the gentle wind blowing outside as we gear up for a winter storm and my cat munching her foot. The third sound is the rhythmic tap of my fingers dancing across the keyboard. Tap. Dance. Leap. It’s become old hat at this point: it’s 5:40 am and I’m wide awake, yet completely exhausted.

“You’re wearing yourself out.”
“You’re exhausted.”
“You’re sick.”
“Why are you still doing this?”
“Why won’t you give up?”
“Why do you care so much?”

Questions people ask. Questions people don’t ask, but I can see it on their faces. In their eyes. I can hear their concern laced through their words. Why are you an activist when your own health is so fragile? How can you call yourself an activist when you don’t make phone calls, you don’t go to the places, and you don’t do the things? You’re lazy. You’re not enough. You’re just a slacker – you aren’t making real change.

I don’t believe any of that. I don’t think any of that is true.

Nights like this are why I’m an activist. As I lay on my floor, shivering yet burning up. Unable to move without intense pain, yet unable to sit still. As Compazine and Zanaflex runs through my veins. As I’m alone and in need of medical help…that doesn’t exist. For if I go to the ER, I will be treated like I am a drug addict. An attention seeker. That it’s all in my head. And nothing productive will happen.

But I am one of the lucky ones. I have a diagnosis. I have a laundry list of them. Some people don’t. And that’s why I’m an activist. That’s why I write. So people can think “Hey, me too!” and know they aren’t alone. So people can think “hey, there’s a name for the thing!” and roll along with it. I’m not an activist because I want to be – I’m an activist because I have to be.

I’m an activist because there are still nights when I’m on the floor, unable to get relief from my pain. I’m an activist because I’m autistic and people feel the need to take away my rights. I’m an activist because people think I’m helpless just by looking at my list of disorders and not getting to know the person I am – kind, compassionate, loyal, cynical, sarcastic, and more all rolled up into one feisty person. I’m an activist because it quite literally is my only option – for when I am silent that’s when they are winning. When I speak, that’s when I have power.

Image description: The background has the picture of three feet: one adult foot, one child foot, one adult foot. They are both standing in two states at the same time. Text reads: "I'm an activist because it quite literally is my only option - for when I am silent they are winning. When I speak, I have power."

Image description: The background has the picture of three feet: one adult foot, one child foot, one adult foot. They are both standing in two states at the same time. Text reads: “I’m an activist because it quite literally is my only option – for when I am silent they are winning. When I speak, I have power.”

I’m an activist despite my disabilities. I have a voice even when I’m silent.  Even though I’m straddling two worlds – physical and online – I’m an activist. Even though my activist life is solely online due to my phone phobia, social and sensory problems, and physical health – I am am activist. Even though it’s limited to flash blogs, tweets, blogs, submitting my work online, and Facebook – I am an activist.

I am an activist because I work for change. Perhaps it’s merely opening a new perspective. Perhaps it is me helping someone put into words something they never could before. Perhaps it is helping someone realize the way they are acting is dangerous and ableist. Perhaps it is nothing – but I have made peace with that.

Being an activist doesn’t mean you do all the things. It means you strive for the changes. It means you do everything in your power. We all cannot do everything, we all cannot be everywhere.

But we all have the power to do everything within our own abilities, and that is what I am doing.