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when your ableism is about yourself

I’ve talked and talked about ableism. I’ve talked and talked about what bullcrap it is. I’ve written so many things about how much ableism has an affect on my life. I’ve said so many things about how much of an impact your ableism has on my own life….

And yet, the person I’m the most ableist is someone I see in the mirror every day. The person that I know the most intimately. The person who is intertwined with me…because that person is me. The person I’m hardest on? The person who I use ableist slurs at? That person is me.

It’s pretty common knowledge I withdrew from college. Largely because of my physical health at the time, but I’d be lying if I didn’t say my neurodivergent brain wasn’t also a factor.

Which is where my own ableism comes in.

I tell myself that if I had just pushed myself harder, I could have gotten that degree.

Which is bull, because if a friend had done the exact same thing, I wouldn’t dream of saying that to them.

Somehow, the words I would never utter to someone else, are magically OKAY when it’s about me.

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

In high school, I was told that I could do whatever I wanted. That my disabilities wouldn’t hold me back. In fact, I was told I minimized my “struggles” and didn’t fully grasp how much my disability impacted my life. This casual ableism, this micro- aggregation… became so twisted inside me, so much a part of who I was… that I likely stayed in college for far longer than I should have.

My own, personal ableism could have killed me. I tell myself my disabilities are no big deal, even though I’m totally and permanently disabled. I cannot work. Not only is my health too unstable, I’m likely to push myself on the days where I am well enough too much and land myself in the hospital. I was threatened at least once while in college that if I didn’t skip class, my doctor would put me in the hospital. My own, personal ableism is lethal.

I talk about the ableism I deal with from others on a regular day. But to admit that I am ableist about myself is hard, one of the hardest things I’ve ever said. I feel that people judge me, and think I’m just selfish or lazy because I can’t get a job. It isn’t for lack of wanting. I desperately want nothing more than to hold down my dream job. I want nothing more than to finish my college degree, but college is a world that is completely inaccessible for me. And THAT is terrifying to say, terrifying to admit. It’s like I’m saying I’m a failure, it’s like saying I’m worthless (see, there’s my own casual ableism at play once again).

My name is Nora, and I am ableist sometimes. And the person I pull down, the person I bash the most, is myself. The person who I judge the most for their disabilities, is me. If another friend were autistic, had my physical health list, had my same brain cooties, I would support them. I would tell them  they were good enough, they were enough. That it was okay they didn’t finish college. But the person who I cannot give that same advice to is myself.

Part of becoming a better person, a better advocate, a better activist, is learning to remove the ableism from my life. Even when it’s about me. This isn’t easy, but it’s something I’m trying to do. And admitting is the first step, right?

 

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What if I stumble, what if I fall?

Father please forgive me
For I cannot compose
The fear that lives within me
Or the rate at which it grows

If struggle has a purpose
On the narrow road you’ve carved
Why do I dread my trespasses
Will leave a deadly scar

Do they see the fear in my eyes?
Are they so revealing?
This time I cannot disguise
All the doubt I’m feeling

I am scared. There is no way around it. I’ve spent my whole life  scared, really. I’ve been disabled since birth, though the list of diagnosis didn’t begin until I was three. When I was four and I became a childhood cancer survivor, I essentially became untouchable by insurance.  As I got older, the list grew and grew. We expected me to grow out of my disabilities, Instead, I grew into them.

And I’m scared. I’m so very, very scared. I’m outright terrified. I need thousands of dollars of medication a month to live. Thousands. Some of my meds do not exist in generics. I require numerous specialists. Health care reform is a very scary, serious thing in my world. I’m moving in under a week and I’m scared as to just transferring my Medicaid over state lines.

I’m scared my Medicare, Medicaid, and SSI will be slashed. I’m scared I won’t be able to get the meds I need to live. I’m scared I won’t be able to see my specialists. Imagine solely relying on government run programs to live. Imagine that private insurance isn’t an option for you – yes, thanks to the ACA I can’t be turned away due to my medical history, but I can’t afford private insurance and there isn’t a plan that would meet my needs.

I’m letting my fear show. I’m letting my doubt show. And let me. It’s hard for me to be vulnerable. It’s hard for me to be scared. Me wondering where this country is going to go isn’t me being a whiny crybaby, someone who’s feeding into hysteria, or any of that jazz. I rely on welfare to live. I literally would be dead without it. My lifetime health bill is in the several million mark. Do I not deserve to live? Do I not deserve to thrive? Do I not deserve a chance at life?

I  can’t hide my fears. I have to be open. President elect Trump, I need you to listen for once. I need you to know that disabled people like me deserve to live. I know I don’t have a job and you likely look down on me. But you know what I do have? I have a witty sense of humor. I’m loyal. I’m compassionate. I’m passionate about things. I’m fighting like hell against a world determined to pull me down. I’m an advocate. Won’t you give me – give us – a chance? We didn’t ask for this life but we’re living it.

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Summer has come and passed
The innocent can never last
Wake me up when September ends

I remember 11 years ago, being a doe-eyed senior in high school. The world was my oyster and all that cliche shit. I was still relatively healthy by my not-optimal standards. I was in honors classes (my school called them “college prep”. We had regular, college prep, and AP. Had I been public school all four years, I would have been an AP student but that’s not my point).

That September, almost every morning on the bus I heard Wake Me Up When September Ends, which I now associate with senior year. September is a difficult month. Everything started falling apart. September is difficult. Please be gentle with me. Know that my blog posts may be more raw and vulnerable. Know that I may be more cynical and snappy.

But please be there for me. Thanks.

-Nora

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Abuse is abuse 

As a disabled, autistic person the odds were staggeringly high for me to be a victim of abuse. I am the one in five. I have been physically, sexually, emotionally, and spiritually abused. It is just how it is. I’m finally safe, at age twenty nine. 

Many of my friends have also been abused. And I’ve heard so many of them say that because I’ve been abused “more” or because they’ve “only” been emotionally abused, it wasn’t that bad. Here’s the thing: there is no just for abuse. Abuse is abuse. Full stop. End of story. 

It’s easy for us to say things weren’t so bad. It’s easy for us to say that our abusd was deserved. I know that time after time, I’ve told myself. God, there are still nights where I tell myself that. That I deserved it. But it’s simply not true. 

I bet none of my friends who say they were “just” emotionally abused would turn and say it to a friend. There would tell them their experiences are real and valid. But yet it’s so much harder when it comes to ourselves. 

I’ve been emotionally and verbally abused by my former PCA. 

I was abused in all kinds of ways from my family of origin. 

I’ve been spiritually abused by the church. 

Each one led to my PTSD. Wanna know something? I got the PTSD dx based solely on my emotional abuse history. Before I told anyone about the other stuff. While I suspect I actually have complex PTSD, that is another story. 

If you have been abused, you have been abused. There is no only. There is no just. You were abused. You didn’t deserve it. Nothing you did could have made a difference. It is on them – your abusers. Not you. 

If you were abused, in any way, you are allowed to say so. You are permitted to have feelings. It’s okay to say that you had a traumatic upbringing. Because there is no just when it comes to abuse. 

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to my father 

To my father,

No one really tell you how to grieve an estranged parent. No one tells you what it’s like when the man who is half the reason you’re alive is dead, but you hadn’t spoken to him for nine years prior. 

Your death was sudden. You were dead for several days before I knew. My exact response was more or less “well, that happened.” For the graveside memorial, I was asked to share my favorite memory of you. I decided that it likely wasn’t best to respond with “the phone call that you kicked the bucket.” I was reminded of the time in tenth grade when I was getting testing done – I was asked to name just one good thing about my dad. I gave him a blank look. I couldn’t. I couldn’t come up with one good thing. 
There are few people the world is better without. Like Anne Frank, I truly believe there is good in everyone. But I can’t find the good in my father. Not when after I moved 750 miles away, I had you banned from my college campus. Not when I was an adult and safe, I lived in fear of you finding my phone number. His death ended those worries…but they still exist. It’s illogical. You’re dead. You’re gone. 

But it’s 6:30 am and I’m awake because I can’t sleep. I’m awake because my mind is plagued of memories of all the stuff you did. I lied for years. I hid the abuse for years. I didn’t tell anyone what you did for me for literally decades. Even though my medical records state that even though I denied those forms of abuse, it was suspected. 

Some days I think there isn’t one good thing about you. But then I remember. 

“Through dangers untold and hardships unnumbered I have fought my way here to the castle beyond the Goblin City to take back the child you have stolen, for my will is as strong as yours and my kingdom as great. You have no power over me!” Labyrinth 

I’m alive (cue “Unbreakable, they alive dammit, it’s a miracle”). I will rise above. You may have torn me down. You may have beat me. You may have raped me. But I’m alive and you are not. I still have time to make something of my life. You have lost the chance.
You lost the chance to see who I became. I became a loyal and compassionate Hufflepuff. I became a fiesty and sarcastic cynic. I’m still an introvert. I never graduated college. But I became an advocate and an activist. I’m becoming the person I needed when I was little. 

Your death sealed the end of our relationship. It’s over. Done. It never was and it is finalized. You are gone. 

Now if only I can convince my brain of what I just wrote. If only I can believe it in my heart. I know I will someday. I just hope someday comes soon. Because, you have no power over me. I have my strong will. I have my friends. I soared over the obstacles. 

Goodbye. 

Your daughter no longer. 

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What’s on my mind?

Facebook asks me what’s on my mind. It’s kinda creepy, really. It also always thinks I’m at target or out getting waffle fries. Which neither are inaccurate if we are being totally truthful. 

But the problem is? I don’t know how to say what’s on my mind. 

But Nora!

You’re such an eloquent writer. But Nora! Just type or say the thing. 

That’s the problem. 

I can’t. 

You see, the word are trapped. The emotions are trapped. The feelings are trapped. 

It’s like alphabet soup and just a bunch of letters swirling around. Sometimes I can scoop out a random word but it isn’t very helpful or relevant. 

I have so many secrets. Oh, everyone has secrets

But this is stuff I’ve not told everyone. 

Stuff I’ve not even dared write out. Because I’m scared to be faced with it. 

It can’t be that bad. 

Well no, but it’s not that good either. 

It’s trapped. I want to speak the words. To type the words. To free myself from the words. But I don’t know how. I’m stuck. I’m trapped. And I’m scared. 

I don’t like feeling like this. The words. The thoughts. The feelings are terrifying. I want it out. I so badly want to be free of this hell I’ve been trapped in for decades. 

But yet. 

I smile. 

I laugh. 

I joke. 

I act like the good person I know I have to be. 

I have been told how smart and capable and resilient I am. 

And so I stay trapped in my head. 

Locked in my own body. 

And it’s terrifying. 

I mean. 

I’ve written out what happened before. My childhood. My past. Some of it. 

But there’s so much more.

A few eyes have seen it. 

But not many. 

And I’m scared. 

I’m terrified.

I have so many thoughts that are still trapped. So much stuff I haven’t dealt with. 

So many nightmares. So many flashbacks. 

And I want to move forward. 

I want things to change. 

But they can’t. 

Because the words are trapped and I can’t pull them out. 

I’m just not smart enough to fix this one.  

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Do you know what ableism is?

Image is of a pink hot air balloon against blue clouds. Text reads "Ableism is living in a world that is not equipped for me.

Image is of a pink hot air balloon against blue clouds. Text reads “Ableism is living in a world that is not equipped for me.

 

 

Do you know what ableism is? Do you know what it’s like to live your life when ableism is facing you literally every time you turn around? Do you know what it’s like to be disabled in an ableist society? Do you know what it’s like to be autistic in a world that’s crafted for neurotypicals? Do you know what it’s like to be physically disabled in a world that actively oppresses your very existence? Ableism is living in a world that’s not equipped for me.

I am Autistic. Ableism is when people insist on erasing my identity, and calling me a “person with autism”, despite the language I have chosen for myself. Ableism is when people force me to look into their eyes, even when eye contact is physically painful. Ableism is when people judge me for stimming in public. Ableism is when people refuse and try to make me into something that is actually impossible for me, due to being Autistic.

I have major depressive disorder. Ableism is just telling me to have more vitamin C, exercise more, get out more, etc. No! This will not help my depression. What I need for you is to listen to me when I tell you how to support me. Not to scold me for making the choice to be on antidepressants. Not to belittle me for the way I cope.

I am physically disabled. Ableism is telling me to stop seeing so many doctors. To just have a more upbeat attitude. This is not acceptable.

I have cognitive and executive functioning problems. Ableism is telling me to just get over it. Ableism is telling me to suck it up and do it. Ableism is telling me that you believe in me and I can do the thing, even when the thing is actually impossible for me. It isn’t as simple as just getting up and doing it. I actually cannot. I am not wired that way.

Ableism is when parents tell me I am not like their child. That I am so high functioning. Ableism is insisting on using functioning labels, even when I tell you that I don’t like them and in fact, actively oppose them. Ableism is insisting on calling my impairments mild or severe, despite the fact that some aspects are mild and others are severe. It isn’t black and white like that.

These are aspects of ableism I face in my life every single day as a disabled adult. Feel free to comment on what ones you face. I know I’ve missed so many as ableism isn’t a one size fits all and something every single disabled person faces.

 

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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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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.