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Accepting Nora-mal

I have both acquired and congenital disability. That means that some of my disabilities I developed as I got older – like Cyclic Vomiting Syndrome and POTS. Others I was born with, like autism and NF. I’m also a millennial. I’m from the age of being told I can do anything I set my mind to. That I have to go to college and get my degree. I was literally told that because I was smart (despite autism, dysgraphia, and dyscalucia), I could do anything. Because I graduated with honors I was expected to do well in college. I ultimately dropped out due to my health, leaving behind a staggering $100K student loan debt.

At various times in my life, I’ve been accused of both minimizing and over-reporting my disability. I’ve been told that I can do anything and that I need to set limits for myself. I’ve been told that the only disability in life is a bad attitude (which you can read about why that’s bullshit here) and that I’m not disabled, I’m “differently abled” (which guess what? THAT’S BULLSHIT!). I’ve also been told, to my face, that because I’m disabled I should aim to be people’s inspiration. That’s inspiration porn, and, you guessed it, BULLSHIT.

Here’s the thing, folks. There’s nothing wrong with accepting I have limits. There’s nothing wrong with aspiring to do things. There’s nothing wrong with just being. It’s okay to try, it’s okay to fail, and it’s okay not to try. I have accepted that I will never have a college degree. No, online college is not an option. No, community college is not in the cards. No, a different school will not be a better fit.

Nora-mal is who I am. Not normal. Not different. I just am. And there’s nothing wrong with just being. There’s nothing wrong with not getting a degree. This is Nora-mal. This is what’s right for me. What’s right for me may not be right for you. You may choose to get a degree. You may not. You may think I’m capable of getting a degree. I’m not. I’m not capable of a degree or gainful employment. There’s nothing wrong with that because that’s just  the way things are.

For me, accepting that I’m disabled has made a difference in my mental health. Accepting that I have limits and that I cannot do all the things I was told I could do. That, for me, is a victory.

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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 630 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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But the greatest is love

“”We lived through times when hate and fear seemed stronger;
We rise and fall and light from dying embers, remembrances that hope and love last longer
And love is love is love is love is love is love is love is love cannot be killed or swept aside.”
Lin-Manuel Miranda

I am a Christian. I am pretty devout in my faith. My faith means a lot to me. I’m a weird mix of liberal and conservative, depending on the issue. This election cycle, my faith has been challenged like never before. People are flocking to a Cheeto-coloured overgrown toddler simply because he says the words they want to hear and he has an R beside his name. And me, with my gentle faith? I cannot wrap my mind around it.

When I was a kid growing up in the Nazarene church, we were taught that Jesus loved the unlovable. I remember belting out “Zacchaeus was a wee little man, a wee little man was he! He climbed up in the Sycamore tree, for the Lord he wanted to see! And as the Saviour passed that way, he looked up in that tree! And He said… ZACCHAEUS, YOU COME DOWN! For I’m going to your house today! For I’m going to your house today!”

Now, quick Bible lesson, Zacchaeus was a tax collector. In Ye Olde Bible Times, the tax collectors were looked down on. Cast out. Undesirable. In the same way, we look upon Muslims the same way. We cast them out. We try to deport them. We paint them as evil, sinister, villains. But I believe, with all my heart, if Jesus were here today, these are the ones he would be hanging out with. Not the white, cookie-cutter Christians… but the ones that society casts out.

Love.

Before Adolf Hitler rose to power, did Christians feel the same way I did? They didn’t have the luxury of watching history repeat itself, but did they feel the same fear?   And what was the result? A mass genocide of Jewish lives. Of disabled lives. Of Polish lives. Of Roma lives. A mass genocide of lives that didn’t fit Hitler’s mold. In his very own words: “If I can send the flower of the German nation into the hell of war without the smallest pity for the shedding of precious German blood, then surely I have the right to remove millions of an inferior race that breeds like vermin”

I would have been put through cruel experiments and murdered in the name of medical science had I lived back then in a Nazi-controlled country. I would have been considered a mercy killing. Many of my friends would be murdered in cold blood for things they cannot control. And as a Christian? Seeing the chance of my friends being murdered? Exiled? Deported? NO. This is NOT the love of Christ. This is NOT a man Jesus would stand behind.

When Jesus was angry, he didn’t stay silent. He spoke words of truth. He flipped tables. He, to take one of my mottos, kicked ass and took names. He stood up for what was right. And he did it all with words of love.

That is what we are called to do, my friends. To reach out in love. To speak the truth in love. Love should guide our every thought and our every action. Is this was Donald J. Trump is doing? Is this the message he is spreading? Donald Trump shouts out words that propel a doctrine of hate.

At the very core, the Bible is a doctrine of love. As the lyrics to a song from Rent state, “give in to love, or live in fear.” I let love guide every aspect of my live. Love is how I make decisions. Love is how I decide what is right. Love is the guiding force. Love is the strongest force of all. When I look at Donald Trump, I see no love. I see someone who uses fear and hate to boost his message. I see someone who is racist, ableist, xenophobic, homophobic, transphobic… and completely void of love.

 

1 Cor 13:4-7 (New Living Translation)

Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

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Hey folks, there’s no pretty graphic. Because there’s no way to MAKE this pretty. There’s no way to candy coat it. There’s no way to wrap this message up with a pretty bow and make in Pinterest worthy. But we need to sit down and have a Very Serious Talk. Are you ready? Because this is my life. This is my reality. This is the world I live in.

Your ableism is killing me. 

This is not hyperbole. This is not paranoia. This is not me making something out of nothing. Your ableism is literally killing me and the people I love. Right now, I am safe as I sit in my apartment listening to Tori Amos. But 19 disabled people – people like me – are dead. Twenty-five more are injured.

I’ve had people tell me – to my face, mind you, that they would rather be dead than disabled. That people like me are a drain on society. That I don’t deserve to be alive. Because I’m disabled.

We know.

Do not tell me that those people did not understand. Do not tell me that they are in a better place now. DON’T. YOU. FUCKING. DARE. Because you know what? THOSE words are what kill us. THOSE words are what cause caregivers to murder their children. It is not mercy. It is not dignity. It is not okay. Your ableism is ripping our lives away from us. Words like that are why people decide disabled lives aren’t worth living and that we don’t deserve to exist, so people like this man take matters in their own hands.

Don’t tell me how hard it is for those caring for us. Don’t tell  me tell me these things. Don’t you think I know? Don’t you think I’ve thought these same things myself? Don’t you think I’m reminded of it every day of my life? I hear the whispers. I see the stares. They’re seared into my memory.

Ableism isn’t about offending me. If that were all it was, I would shut the hell up. I would quit speaking out against a world that’s determined to pull me down. Ableism isn’t about being politically correct. I see you, and I hear the steaming load of crap you spew out. Ableism is about our LIVES on the line.

And THAT is why I can’t sit in silence.

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“But, autism stole my child!”

One of my favourite feelings is standing outside and feeling the fresh, warm sunshine against my pale skin (hopefully, I’ve remembered adequate sunscreen otherwise I’ll quickly have a VERY BAD FEELING) and a gentle breeze brushing my hair. This is my happy spot. This is freedom. This is joy. This is life. This is where I feel at peace. My mind is fluttering and my heart is singing. I am vibrant and radiant.

And yet. You had to know there was a “yet” or “but” coming.

I get weird looks sometimes. Why? I may be repeating a favourite script under my breath. This just means I’m happy! I may be flapping or flailing, because I’m overcome with joy or I’m overwhelmed at a sound going by. I may be doing my version of a crip-bounce (it ain’t graceful and you don’t need to see it, trust me). The looks. The whispers. The stares. The questions. Because I’m autistic. Because I’m filtering my world in a different way.

“Autism stole my child.”

I’ve heard parents say it so many times. That autism stole their child. That their child is a burden. That they’d rather their child be dead than autistic. But. I value each one of their lives, even if their parents don’t. Even if their entire world is telling them they’re stupid, they’re worthless, they’re burdens, and their little routines of comfort are petty, I’m shouting out at the top of my voice that they’re anything but. When they are murdered by their caretakers, I weep bitter tears for them. I mourn the dead and I fight like hell for the living.

But you know what?

Autism gave me my freedom. Autism gave me my voice. Being autistic is who I am. It’s connected me to a world of friends I wouldn’t have otherwise. It’s helped me interact and understand on a level I wouldn’t otherwise. I’ll be the first person to admit autism isn’t all skittles and sunshine.

There are times that suck, that suck suck suck so much. Such as when I’m clasping my hands over my ears and crying because the neighbors are setting off fireworks. Such as having the words literally trapped inside me and being unable to speak. Such as not being able to wear what I want when I want due to sensory issues. Such as avoiding certain foods.

But at the same time, there’s beauty in it.

And so I say stim away. Flap away. Script away. You aren’t hurting anyone and you’re expressing joy. Or you’re calming yourself. Or it’s comfort. Or maybe you just plain want to. All these options are fine! All these options are valid!

For me, autism is freedom. Autism is life. Autism is who I am.

Image is of green text on a white background and reads "Autism gave me my freedom." On the right side is a green dog in a party hat. Autistic party dog, I guess?

Image is of green text on a white background and reads “Autism gave me my freedom.” On the right side is a green dog in a party hat. Autistic party dog, I guess?

 

(Also, I kept this post family friendly in case people want to share with their kids or younger teens. Do you know how hard it was for me not to swear?! Really… well, I almost swore there, hard.)

 

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‘Cause there ain’t no doubt, I… wait, what?

Call me a cynic. Call me unpatriotic. Call me a party pooper. But I really don’t like the fourth of July. Don’t get me wrong – I am grateful for our veterans and think they are heroes. I bawl whenever the news tells a story of a soldier surprising their family when they came home. And I am grateful for those who gave the ultimate gift.

And yet.

People say that we’re all free. But we’re not. Women are paid less than men. A black man can be shot for just walking down the street. An autistic child can be murdered by their parent and the parent walks away. This isn’t opinion, this is fact. In our very pledge we say “with liberty and justice for all”, but where was the justice for Tamir Rice? Where was the justice for the autistic children who were murdered by their caregivers in the name of mercy?

We live in a country where racism, homophobia, xenophobia, and ableism are rampant. We live in a country where disabled adults work in sheltered workshops  to profit off their disability. Disabled people have to fight for the right to marry. Muslim hate crimes are alive and well. When we say “But the flag still stands for freedom, and they can’t take that away” like the song says? Or do only some have freedom? The ones we deem good enough? The ones that fit a cookie cutter mold?

“And I’m proud to be an American, where at least I know I’m free
And I won’t forget the mean who died, who gave that right to be
And I’ll gladly stand up, next to you, and defend her still today
‘Cause there ain’t no doubt, I love this land… God Bless the USA.”

I don’t particularly love my country. Not when we have the current presidential candidates. Not when my voice was literally silenced, because the caucus is not handicap accessible. Not when people are trying to strip away my rights and freedoms because I’m disabled. Not when my friends are given death threats (yes, it happens) for being advocates and activists. Am I free? In some sense, yes. In other senses, we have a long way to go.

I’m autistic. I’m physically disabled. My brain is alphabet soup. And I am not free. Do I have more rights than I would in other countries? Well yes, it would be absurd to claim otherwise. But I am oppressed. Every single day. My friends are oppressed. We are not free. We still have to have a disability day of mourning, for god’s sake, alongside a transgender day of remembrance.  Not even a month ago, there was a terrorist attack on American soil inside a gay night club.

We sing and speak about freedom and we make noises about liberty and justice. When the truth is, these things are just for a select few and many more are denied these same things every day.

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The cost of being ill

Recently, a mother in Mississippi reached out to one of her local politicians. Her daughter, a diabetic, requires expensive medications merely to stay alive. The politician responded with a rather heartless “Why don’t you try paying for them with the money you earn?”

Do you know the cost of being ill?

Do you know the cost of being disabled?

I am not diabetic, but I have asthma, hypoglycemia, and other expensive medical conditions. In order to stay alive,   thousands of dollars of medication flow through my veins.

Do you know the cost of being ill?

I am unable to earn money. I am unable to pay for my own medications. Yes, I rely on welfare to stay alive. Does this make me a lesser person? Does this make me undesirable?

I have had multiple surgeries, and will be getting surgery on my teeth in the near future. Due to my medical history, it can’t be done easily and I’ll need to be completely knocked out. I’ll need someone to stay the night with me. It’ll literally cost thousands of dollars, and I’ll likely have complications due to my medical history.

My illness has cost me friendships.

My illness has cost me my happiness.

My illness has cost me my education.

My illness will one day cost me my life.

Do you know the cost of being ill?

Do you know how badly we wish we could pay for what we need to stay alive with “money we earned”?

Because I know it.

It’s my life.