Walking in our shoes

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

For many years, this has been one of my favorite pictures. It’s my feet and my best friends feet. It’s been both our profile photos and at least my cover photo before and will be incorporated into my memoir. It’s simple and there’s nothing fancy about it. The framing isn’t great and the colours aren’t ideal. But I love it.

I love it because it tells a story.

It tells a story of two best friends – both who have walked many places. Some easy, some difficult, but we’ve both walked a road.

It tells the story of two teenagers who met online over half their lifetime ago and their friendship blossomed into a real life friendship. Our lives are different in many ways, but the same in many ways.

We walk in our shoes. And sometimes, we walk in each other shoes, or at least we did when we lived together.

Our shoes have seen a lot. Our shoes tell a story.

One of Autistic acceptance.

One of mental health.

One of being neurodiverse.

These are our shoes.

And this is our story.

Today, we are encouraged to light it up blue. Today, we are told that being autistic is a burden. Today, we are surrounded by puzzle pieces and told we are merely missing pieces. That we are a puzzle to be solved. Today, we are told our hard our lives are.

We are told that people higher functioning are the “lucky ones” and people lower functioning are denied agency. Even though I may be both be so-called high and low functioning  on the same day – I can make a phone call to my doctor, but I can’t use the stove without serious risk of injury. I can take care of my cat just fine, but taking care of myself is another story.

It’s time to shut up about walking in the caregivers shoes.

It’s time to care about our shoes, for a change.

Introduction to Project

Image is of a multi colored background that says "I am not a person with autism. I do not struggle with autism. I am Autistic."

Image is of a multi colored background that says “I am not a person with autism. I do not struggle with autism. I am Autistic.”


Ah, April. Every Autistic’s favorite month. This is sarcasm.

It’s the month where we’re told what an epidemic autism is. And it’s the month where we are tone policed and language-policed every single day. More so than usual. Shocking, I know. We are told to use person first language, even when we speak out against it. If we dare to speak out, we are bullied and silenced.

It’s April first.

Every day I will be told to light it up blue.

Every day I will have puzzle pieces shoved at my face and told I’m merely a puzzle to be solved.

No more.


Every day this month, I will be using various pictures and memes to talk about living and thriving as an autistic. To combat light it up blue. To combat awareness. Because frankly, I’ve had enough of your fucking awareness.

It’s time for acceptance.

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.”

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.

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.





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