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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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I’m shady…or something

Image is of a pale brunette female. She is wearing a grey hat and zebra print sunglasses. She also has on an orange, pink, white, and grey cardigan, an orange t-shirt, and a blue, green, pink, and orange necklace with various sized square and circle beads.

 

 

 

 

So, one of the more sucky things about being Autistic is dealing with sensory overload. Sensory overload is when there’s just too much going on in the world and my brain and body cannot process it. So this results – I wear sunglasses indoors. I look silly and if I’m doing something like getting food, I have to ask a friend to help describe the food so I don’t get something gluten-y by mistake. Because that would suck donkey balls.

Light hurts. Like, they’re not just bright and trigger my migraines sometimes (I am hella photosensitive and suffer from severe photosensitive migraines. I really need to get a pair of blue tinted glasses, but moving on). They physically hurt every inch of my body in a way I can’t explain. They send my brain into overdrive. I literally cannot function with lights on many days.

But I’ve accepted it. It’s who I am. Who cares if I look silly wearing my sunglasses indoors? I’m happy and comfortable. Isn’t that what matters instead of conforming to norms?

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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.

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Phobia vs Fear

Phobia is different than a fear.

I have things I’m scared of. We all do. But my phobias? Oooh, boy.

 

Let me give you an example.

I am absolutely, completely, 100% phobic of the dentist. Many people get some anxiety about the dentist. They’re able to push it aside, though, and eventually go. Me? I am not. I have to be heavily sedated or shit gets real. I panic and go into a full blown panic attack just thinking about going… despite having an impacted wisdom tooth and being in dire need of dental care. But due to the severity of my phobia, I am on the waiting list for highly specialized dentists in the twin cities.

I can’t just suck it up. I have been told by my problematic PCA (which is a blog post in and of itself, but due to my personal safety, I am not making it public outside of my personal Facebook until she’s gone) that I need to just suck it up and go. But. I have nightmares about the dentist. The anxiety is so severe I can’t even think about it safely. It consumes me. It isn’t just a matter of getting it done with, and doing something better after. I have to deal with the aftermath.

Phobias suck. But they aren’t fears.

Please don’t tell us to suck it up. This is dangerous.

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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.

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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. 

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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.

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What I Wish Someone Had Told Me

It is rare disease day. Get it? Feb 29? Rare disease? Hardy har har. Clever, eh?

There are so many things I wish someone had told me before being diagnosed with rare disease. I have many – POTS. CVS. Immune issues. Hyper mobility syndrome. The list goes on and on. Many of them I was born with, others I grew into.

People with rare disease look just like anyone else. When I am just hanging out,  I look like anyone else. I look like I am healthy, even though my body is slowly killing me.

Image is from a few years ago. A pale brunette is sitting on a rock by a lake. She is wearing a sock monkey hat, a purple sweatshirt, a blue T-shirt, and jeans. She also has on yellow wrist warmers.

Image is from a few years ago. A pale brunette is sitting on a rock by a lake. She is wearing a sock monkey hat, a purple sweatshirt, a blue T-shirt, and jeans. She also has on yellow wrist warmers.

But there are so many things I wish I had known.

I wish I had known how lonely it was. How isolating it was.

I wish I had known how depressing it was.

I wish I had known it wasn’t lucky to have to drop out of college. To not be able to get a job and rely on disability. To be able to sit in bed and play video games and watch Captain America all day – because frankly, some days I am too sick for even that. Frankly, some days I am too sick to even turn on my laptop.

I wish I had known how soul crushing it was to have my hopes and dreams yanked away from me. To never achieve my dream career. To know my dream job is out there but to be incapable of getting it.

I wish I had known how big of asshats doctors and nurses can be. To not be believed. To be perceived as attention seeking. To be told it’s all in my head. To be nearly killed by the mistakes of doctors and nurses.

I wish I had known what intractable pain was truly like. That as I got older and as time went on, the pain would only get worse, and not better. I would become resistant to more and more medications. Have surgeries as a desperate attempt to not be in horrifying pain all the time… and have them fail.

I wish someone had told me how much it would impact my depression. That there would be days I would be so depressed I couldn’t move. Couldn’t eat. Couldn’t sleep.

I wish someone had told me there would be days where I literally have to ration out my energy and decide between peeing and showering. Eating or showering. Getting the mail or making a phone call. The fine juggling act would become a daily battle, and it isn’t just a one off thing.

I wish someone had told me all these things…

But you know what else?

I wish someone had told me that there are people out there who understand. That there are medical communities, zebra communities, spoonie communities… a place where we all understand each other, even though  our disorders are not all the same – even though we have different medical histories, we understand.

I wish someone had told me I would find my true friends who are there in thick and thin. The ones who would distract me while getting injections. Who would get me stuffed animals that now accompany me to the hospital. Who blow up my phone and facebook wall when I need them.

I wish someone had told me that I would still find hope. Not hope for a cure, but hope for a treatment.

I wish someone had told me I can still make a difference in the world. Not in the way I thought I would, but in other ways.

I wish someone had told me that I am more than a list of medications and medical disorders, and one day I would believe that.

I wish someone had told me that despite my disorders and medical history, I would still be able to fly across the world to visit some of my favorite people in the world. That I would make incredible friendships. And even though I would lose one of them – my beloved Beth – her impact would never leave me.

I wish someone had told me that there are good doctors and nurses out there. Ones who believe me. Ones who advocate for me. Ones who will literally save my life.

There are so many things I wish I was told. And so now, I am telling them to you.

 

 

Alone we are rare.
Together we are strong.

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SMILE

Something I have been told my entire life is “the only disability in life is a bad attitude”. Not in those exact words, though. “Smile! Your face will break!” “You’ve got to keep smiling.” “Keep your chin up!” “Don’t let it get you down!” “It’s just a bump in the road.” “It’s not that big a deal.” “Other people are more disabled than you.”  “She would want you to smile.” “She wouldn’t want you to be sad.”

You know what? Sometimes attitude doesn’t do a thing. I can have the best goddamn attitude I want, but Beth isn’t coming back from the dead. I dearly loved Beth and Beth dearly loved me. I am grieving. To tell someone who is grieving how they should feel, and even further – to use their departed loved one as a tool how to feel, is unintentionally cruel. We know they would want to see us happy. We know they loved us. We know all that. But knowing doesn’t take away the hurt.

Contrary to popular belief, I’m actually a happy-go-lucky, bubbly person despite being shy, autistic, struggling with anxiety, and having depression. I crack jokes at the worst times and I’m the person you will find cracking up for no reason at a funeral. I laugh to cope – I laugh instead of cry which has created some really awkward moments in my life. But I’m also cynical, sarcastic, and scared. But when you tell me my disability is my attitude, you’re implying that my attitude is the problem when you know nothing of my attitude.

You see, when you say “the only disability is a bad attitude”, you are essentially saying if I tried hard enough, I wouldn’t be disabled. That’s not true. I can try as hard as I want, but I will still have metal in my back. I can try as hard as I want and be as perky as ever, but it doesn’t change the fact my immune system is at war. I can happily bonk you on the head when I have a deliberating migraine, if you insist I keep up a good attitude though… but I don’t quite think that’s what you’re going for.

Shocking, each one of us disabled people has our own personality. I know, novel concept eh? But we’re all unique. We all use our attitudes in different ways. And if someone choose to be bitter toward having a disability – that’s okay. If someone chooses to be angry, that’s okay. It doesn’t make them better or worse than anyone else with a disability. It doesn’t mean they’re a “bad crip” or anything.

It seems that just because we have disabilities, we’re expected to be perky and happy for YOUR benefit. Because YOU don’t want to see us suffer. Because our loved ones who have gone before us wouldn’t want to see us suffer. You know what? Life fucking sucks at times. Life fucking isn’t fair. People die too young, people get illnesses ‘too young’, people are born with disability. Life happens.

I will choose to live with my disability with the attitude I see fit. Today, I may be advocate Nora. Tomorrow, I may be educating Nora. Next week, I may be bitter and cynical Nora and in a month, I may be bubbly and cheerful Nora. Just like an able-bodied person, I have feelings and emotions too. Just because parents of disabled children seem to think we should be happy and their children should be joyful, doesn’t mean we have.

Disability isn’t merely overcoming what our disability throws at us.

 

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When I Become “That Friend”

It seems that more often than not, I become “that friend.” You know the one I’m talking about. The one who you can never trust. The one who you wonder if she is actually going to see her plans through with you. This has cost me friendships.

image is of a sick and tired nora, getting comfort from her brown and gold tabby.


You see, when I become that friend, I become someone who I never wanted to be. If you know me in the least, you know I’m loyal almost to a fault and I’m stubborn. You also know that I suck at answer my phone so I am that friend who doesn’t return your phone calls. You get upset. You get angry. But what you don’t understand is that I actually find phone calls painful. I have severe phone anxiety and although it’s better now, as a child I would burst into tears if I were merely asked to make a phone call.  Talking on the phone actually has an adverse affect on my health, to the point where I go to great lengths to avoid it and have suffered massive consequences, in all aspects of life.

When I became that friend, the one who has to cancel plans last minute, I kicked myself in the ass. I want to be reliable. I want to be spontaneous. I want to be the friend who you know you can trust to pull through. The one you can make plans with and right as rain, you know they will happen. But my immune system is weak. I can get sick at the drop of a hat. I can get overwhelmed and anxious, and not capable of dealing with even my closest friends. My sensory issues can go into overload, meaning I have to be very particular about how I do things if I want to conserve every last spoon.

I became the friend who would wander away in the middle of messenger convos, sometimes serious ones. People would get upset and angry, thinking I don’t care about them. Thinking I was being selfish. But I randomly fall asleep, because I am ill. I randomly get overwhelmed, because of my autism and anxiety. I sometimes get distracted, because I have ADHD. It doesn’t mean I don’t love you or care for you. It means my body and brain just do their own thing, and I have little control over it.

I became the friend that everyone hates. You know, the one who is always playing with her phone. The one who will sit with her friends while still on her laptop. The one who is twirling her hair, cracking her knuckles, swinging her feet. I need to do those things. It isn’t a want and it isn’t merely me being rude. It’s me trying to function in the world the best I can. I promise, these things help me pay attention to you. Usually. Sometimes I get trapped in my own world and it doesn’t mean I don’t care. It doesn’t mean I don’t love you. It means that I’m simply overwhelmed and I need to retreat to my safe place.

I became the friend who repeats herself, a lot. I honestly don’t remember saying things, because I’m on a lot of meds and I’ve a scatterbrain at baseline. Please don’t get mad because I repeat myself, a lot. And I also find saying the same things over and over comforting, because they’re words I know and words I can rely on.

And at the same time…

I still want to be your friend.

Even when I’m sick and lonely, I want you to come over and watch The Princess Bride or Ever After with me, two of my comfort movies. I want you to play video games with me. I want you to sit and talk, even if I’m lying in my bed barely able to move and you’re sitting in my floppy chair thing. I want you to still invite me to go out places, even if I may cancel last minute. I want to still hear about the details of your life, even if I don’t answer your emails or Facebook messages right away.

I became your friend who is chronically ill.

But I am still the same friend you always had.