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i don’t know what it’s like to not be depressed

I’ve had depression for as long as I can remember. It’s a part of me. It’s all I’ve ever known. I actually don’t know what it’s like not to be depressed. Which is a really weird sentence to type. A lot of people think I’m a chipper, upbeat, happy go lucky person. But the thing is, that’s the facade I use to cope and to get through life.

A victim of child abuse, I learned to put up a facade to keep myself safe. Showing emotion, allowing myself to be vulnerable… letting people in to my deepest, darkest moments? Terrifying. I learned to shut off my emotions and act like everything was okay, because it’s what I needed to survive.

I’d have frequent meltdowns because I didn’t know how to cope going up – as an autistic, depressed, abused child I simply didn’t know what to do with my feelings and they overloaded. As I got older, I learned instead to internalize everything. I act like everything is okay with the world so that I can pretend things are okay. The truth is, they aren’t.

I’ve seen so many people say they wish they could shut off their emotions. I wouldn’t wish this upon anyone. I shut off my emotions because I can’t cope with them, but it’s only a short term fix and eventually blows up in my face when I have to cope with it. Because I’ve spent so long shutting things off and acting like my problems don’t exist, I’m now struggling to come to terms and even talk about things.

I’m fueled by anxiety and depression, a bundle of nervous energy. There’s often so many thoughts and words flying around in my head that I don’t know how to slow down and untangle them. I wish I hadn’t started shutting off my emotions. I wish I had been taught how to cope with things, instead of having to finally learn how decades later.

I literally don’t know what it’s like to be depressed. And it breaks my heart. I don’t know what it’s like to not be this way. So many therapists and doctors have asked me what I thought it would look like not to be depressed, and the hallowing truth is?

I actually have no clue.

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This year, I’m tired.

I keep trying to write something for “Autism Awareness Day”, or what my fellow autistics are trying to change into “Autism Acceptance Day”. I’m trying to write something articulate, something profound, something that will challenge people and make them think. I have so many words circling around in my head, but trying to get them to my keyboard is hard.

I feel like the things I say are controversial, and they shouldn’t be. It shouldn’t be controversial to say don’t abuse us, and yet it is. In the past week, I’ve read grizzly stories about abuse toward autistic children (I am not sharing the details. They’re unnecessary. But suffice it to say they’re horrific). I’m tired of defending children’s right to exist.

I’m tired. I am so tired, and I am so worn out. Advocacy is my passion, activism is what gets me pumped. I’m tired of having to fight for my right to exist. I’m tired of telling people that their awareness campaigns are acutely harmful. I won’t stop – it’s impossible to shut me up, but dammit, I’m completely worn out.

And so. This year I’m asking for compassion. For understanding when my words jumble. For supporting when I burn out . 

All I’m asking is for you to listen to our voices. All I’m asking is for you to amplify our voices. We’re telling you what we need. We need acceptance, not awareness.  We need you to help us fight against rampant ableism, because we’ve been doing it for years and we’re ALL TIRED. Because we’re autistic, we’re silenced. And that’s not okay.

This year

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Let disabled people talk about their lives

I’m really tired of the way disabled people are currently treated.

If we talk too much about our disabilities? Oh, we’re too NEGATIVE. We’re just whining.  We need to try  ~positive thinking~  *tosses glitter*. We just need to be more positive! Yay!

If we try to be too positive about our disabilities? See, it’s not really that bad. We can’t be THAT disabled if we’re able to see the good in it. If we’ve accepted our disabilities, then we must not really be disabled. 

The thing is, no matter what we do, people seem uncomfortable that disabled people exist. Some think that we should be willing to share every detail about our lives, some think we should just shut up and live in silence.

The thing is, EVERY person has a DIFFERENT level of comfort with what they are okay with sharing or note. For the most part, I am happy to talk about my disabilities and teach and educate. But sometimes, I just plain don’t want to and there is nothing wrong with that! I don’t owe anyone an explanation on why or how a certain aspect of my disability affects me. “Because I’m disabled” IS an adequate answer to “why can’t you do thing?” and details aren’t necessary.

As an activist and an advocate, I think it’s important to be open and honest about my disabilities. Which, for the most part, I am.  However, that doesn’t change the fact that there are some things I am more private about and don’t really want to talk about. And just because I’m willing to write about it, doesn’t mean I want to answer the random person on the bus who asks me about it.

I get to choose when, where, why, and how I talk about my disability. That isn’t for someone without my disability to decide. If they don’t want to hear about it, they don’t have to put themselves in a position where they have to listen. If I want to share why or how a certain thing affects me, that’s okay! I’m not being negative or candy-coating my disability or whatever. If I don’t want to, it doesn’t mean I’m not “really disabled” or I don’t “really want to educate”. I have a right to privacy just like anyone else.

People should be able to talk about their disabilities how they want.

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Let that be enough

My hearts breaks every time I see a fellow autistic believe they are a burden. My heart breaks every time a fellow autistic thinks they aren’t enough. My heart breaks every time I see a fellow autistic think they don’t deserve accommodations, that they’re asking too much, that they should just suck it up.

You aren’t a burden because sometimes you need things reworded in a way that you understand. You aren’t a burden because sometimes you need silence and sometimes you need noise. You deserve to have a place you thrive in for work and school or anything, really. If that means you need noise canceling headphones, if that means you need to do it in a seperate, dedicated room – that’s okay! There’s nothing wrong with that.

If you need expectations written out and not just, well, expected  of you, that’s okay! That doesn’t make you a burden. Just because it’s not what the majority of the world seems to thrive on doesn’t mean it’s what YOU need to thrive on.

If you need to take a comfort object, if you need to stim, if you physically cannot sit still, that’s okay. You aren’t hurting anyone else by stimming, you’re doing what makes you comfortable in a very scary world.

Your existence is not a burden. . Neurodiversity is natural. You are WORTHY of the help and supports that you need to THRIVE in the world. Just because someone needs different, more frequent, or what you deem as “easier” accommodations, doesn’t mean that yours also don’t exist and that yours aren’t worthy.

The accommodations I need due to being autistic may be different than the ones someone else needs. That doesn’t make theirs more or less important than mine; it doesn’t make theirs more or less valid than mine. They still exist, because that PERSON exists. 

You are a beautiful, worthy person who just happens to be disabled. You’d beautiful and worthy and perfect without that disability, you’re beautiful and worthy and perfect with the disability. Accommodations make it so that you can enjoy and thrive in the world as you deserve to!

There’s nothing wrong with asking for help. It doesn’t mean you’re weak. There’s nothing wrong with needing supports. It doesn’t mean that you’re a burden. There’s nothing wrong with needing help sometimes.

You exist. You’re worthy. You’re loved. You’re valid.

And just for today, just for now, let that be enough.

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Growing Up Disabled

I have always been disabled. Some people acquire disability, some people are born with it, some people are born with it and don’t realize they’re disabled until adulthood.

In my case, I was born disabled and I’ve always known I’m disabled. It’s very much of fact of life, the same way I have blue eyes and pale skin. It’s just the way I’ve always been and always will be. There’s no changing it, no looking around it.

Growing up disabled and knowing it means that people always  belittle you, because you’re disabled. You’e often talked to like you’re not there. You’re talked around. You’re handled with kid gloves. You’re treated as lesser than. Why?

Because you’re disabled.

I have been told, to my face, that I’m an inspiration just for doing things like getting a soda out of the drink cooler at Walgreens (I wish I was joking…). I have been told, to my face, that people would kill themselves if they had be disabilities. I’m told I should be grateful to be objectified and turned into inspiration porn, because it touches other people. I’ve been told so many bullcrap things.

Because I’m disabled.

I’ve been told I don’t deserve health insurance. That I should die, because I am expensive to keep alive. I have been told that because I cannot get a job, I don’t deserve to live. I have also been told I have to get a job, that there are “jobs for everyone”. This simply isn’t true in today’s world and climate. I was actually kicked OUT of vocational rehab for being too disabled (which at the time, was frustrating. Now I think it’s hysterical).

Because I’m disabled.

I’ve been told not to let my disability define me, that I can do anything despite being disabled, that I can’t do things because I’m disabled. I’ve been told both extremes.

Because I’m disabled.

I’m told that “my mind is fine”, even though the rest of my body isn’t. Which is ableism, because my mind isn’t fine. And there’s nothing wrong with that. I’ve been told that I need therapy, I need meds, I need this diet, I need that diet.

Because I’m disabled.

Somehow, being disabled, means it’s open season. It’s somehow okay for strangers to comment on my health, on my very existence. It’s okay, when it really shouldn’t be.

Because I was born disabled, I’ve lived with this every day of my life. I’m sure I would if I had acquired disability, but I’ve never known what it’s like to live without this. What it’s like to live without people commenting on my very existence, in ways that would be rude if I wasn’t disabled.

Why? Why is this acceptable just because I’m disabled? I was born disabled, just like some people aren’t born disabled.

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Burnout, burnout

Ah, burnout. I’ve written about it before, and I’m writing about it again.

It’s an exhausting place. it really is.

It makes just existing utterly exhausting.

Years of passing, years of existing take a toll.

I am tired.

I am worn out.

I am weary.

Years of passing wear me down.

No more, I say, no more.

For I am burned out.

For I am broken.

For I am lost.

For I am struggling with basic self care.

Because of years of passing.

Because of years of trying.

It’s not a good thing.

 

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accepting autistic

I am autistic. It’s as much a part of me as anything else is. It’s the Instagram filter I use to view the world, it’s the very way I interact with the world. By accepting autistic, I am accepting who I am.  I don’t know what it’s like to not be autistic – even when I didn’t have words for it, it’s who I’ve always been. To me, being autistic is as natural as existing – for I cannot exist without it.

Accepting being autistic doesn’t mean I glorify it. I mean, I’m happily autistic. I’m glad there is a name for why I am the way I am and a way I can explain it in terms others can understand and relate to. But it also doesn’t mean there aren’t things that are hard and aren’t things that I would change if I could. Because there are things I wish were easier. I wish that I could have a job. I wish that I could complete college. But it just isn’t feasible.

Accepting autistic doesn’t mean I think that I’m better than other autistics or people who aren’t. That’s silly. It does mean I accept myself how I am. It does mean that I don’t hide who I am. It means I accept myself, autism and all.

For me, coming to terms with being autistic has been important. Because I wouldn’t be -me- if I wasn’t autistic, I would be someone else entirely. But would I be happier? Sadder? Would I still be a loyal Hufflepuff? What is autism, what is my PTSD, what is anxiety..what is what? But the thing is, wishing I wasn’t autistic doesn’t change anything. I can’t change being autistic. So why NOT accept it? Why NOT make the best of it? It’s better than wishing I was something I’m not, right?

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I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

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Autistic children become autistic adults

Autistic children become autistic adults. We are not adult children. We’re adults. Sometimes we need more support than others. That’s okay. Sometimes we live on our own, and sometimes we can’t. That’s okay, too. Some of us go to college. Some of us dropped out. Some of us never will go to college.

But autistic children become autistic adults. How you treat the autistic adults on Facebook who try to educate you or who just interact with you is how someone may treat your child someday. Autistic children become autistic adults. We’re adults. We deserve to be treated with respect, even if you view us as lesser than.

Treat us with respect. Treat us how you would want someone to treat your child. We were your child once. We were once young. Just because we’ve never been parents, doesn’t mean we’ve never been children. And above all, we’re real people with real feelings.

So please don’t mock our spelling errors. We’re trying.

Please don’t get upset when we ask you to clarify – we often legitimately don’t understand because how our brain works.

Please don’t get upset we repeat ourselves – we sometimes don’t realize we’re doing it, even though it’s right in front of us.

Please understand that sometimes we break up Facebook comments and don’t post everything in one big posts – long walls of post are “text walls” or “word salad” to us, and breaking them up makes it easier for us.

Please just use a little bit of compassion.