Just Stimming…

A land we can share (a place I can map)

Truth Is

with 15 comments

Author’s note: Yesterday in the blogosphere there was an Autism Positivity Day Flash Blog, sparked by one author noticing that someone had found their blog by searching “I wish I didn’t have Asperger’s.” Due to my own situation, I couldn’t participate, but today is Blogging Against Disablism Day, and I still have something to say.

Sometimes in the morning I am petrified and can’t move
Awake but cannot open my eyes
And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time
x

Dear “I wish I didn’t have Asperger’s,”

I want you to know that I understand.

That’s the first thing. This isn’t going to work if we aren’t honest with each other, so, let me be honest. I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all–when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I need you to know that I understand.

I do. I do. I want the things a cure could give me. I want to have the leading role in my own story, and parts in others’. I want to be able to do the same things everyone else can do in the same way without any extra effort. I want to not feel like a freak. I want to feel safe. I want to be someone my parents can love. I want to know I have a future, and I want to not have to blaze that trail by myself. I want to have worth. I want other people to not think they have a right to me and my space, or else I want it to stop bothering me. I want my words and experiences to make sense to other people, and I want their words and experiences to make sense to me. I want to have to work just a little less hard. I want to have a college degree, a job, and a house of my own, and I want to be able to live wherever I want. I want to be able to assume I’m a person. I want to not have a month out of the year dedicated to my brokenness. I want to be able to assume that it’s not me, it’s them. I want to wake up and not be terrified or already tired.

I want a lot of things.

It’s not a bad thing, to want things.

Check in: can you see, now, that I really do understand? I hope you can. I get a couple of visits from you, or someone with the same keyword search, every week, and I want you to know that you aren’t alone, and you aren’t wrong.

Okay. I’ve been honest with you. Now I want you to be honest with me. Can you look at the list of things I want, and tell me if you see a pattern?

I’ll wait.

While I wait, I figure, I might as well tell you some other things I’d like to stop being. In addition to no longer being autistic, I’d also like to be cured of

-being a lesbian
-being female
-being so obscenely tall

Really. I’d like to get be able to get married to someone I love in every state. I’d like to be able to walk down a dark street without fearing for my safety. I’d like to be able to sit in a chair designed for someone of my height. And none of those things are happening right now, so I guess I can either fight for them to change, or try to change myself.

Okay. Did you find the pattern? It’s okay if you didn’t. It took me awhile to understand it. It’s subtle.

Every single one of those things I want?

Have nothing to do with being autistic.

Really. Not a single, solitary one.

I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault. Pretty sure the one in the wrong there is the one who thinks that a disability means you aren’t a person.

Why do I want to be able to do the same things as everyone else? Why is that important to me? If I lived in a world where it was recognized that there are multiple ways to do something and that this is okay and the things I do and the ways I do them are valid and important, would I care? Would I even realize this was something to care about at all?

I would know that I have a future, and that it’s a bright and near and real one, if I knew growing up that autistic adults existed. Guess what–they do, they have for thousands of years, and on the whole, they’re doing just as well as anyone else.

I want to have worth–okay. See, if I had a friend who felt worthless, I’m pretty sure I wouldn’t tell that friend “you’re right, you’re pathetic. Please change everything about yourself.” I’m pretty sure I would tell that friend that the people making her feel worthless were abusive assholes, that she was good at plenty of things, that she was a fantastic person I was lucky to know, and that human worth isn’t some tangible thing we can gain or lose. And if I can say all of that to a friend, and mean it…why can’t I say it to myself? I’m not special. I work by the same rules as everyone else. And that means I am worth something, whether I believe it or not.

I can keep going through these. I do make sense to a few people, who take the time to listen to me the way I need to be heard, and they make sense to me. That is how relationships work, and there are lots of different ways to communicate. I can have a job, a living situation I am in charge of, and all the education I want, with the correct supports, just like everyone else. It is not my fault that the supports I need differ from the majority, and that is not an excuse or invitation to mistreat or discriminate against me. Etc etc etc.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear–there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.

But if, in order to be safe I have to stop being me?

Then I’m really not safe at all.

As long as being disabled means being unsafe, then no one is safe. Not really. Disability is a natural part of the human experience according to the ADA. Most people will experience some form of disability, for some period of time, at some point in their lives. So long as we as a society keep permitting exceptions to rules like everyone is a person and treat people like people, none of us are safe. Safety earned by staying within acceptable margins isn’t safety at all.

I promised to be honest. Part of being honest is looking at what my words actually mean, what lies beneath them, what ideas are controling what I say. And underneath every I wish I wasn’t autistic is a I wish people would stop hurting me or a I wish the world had room for me or a if I blame myself, I can feel like I’m in control.

And it’s okay that I feel this way. Well, it’s not okay that anyone ever has to feel this way, but I’m not bad or wrong for feeling it. Neither are you. But feelings aren’t the same as reality, and in the end, if we weren’t autistic anymore, there would still be people hurting others just because they can and just because no one ever told them to stop, and we’d still know that it takes only the slightest deviation before we’re vulnerable again. A cure won’t ever be able to change that.

What will change that is something a lot harder than a magic pill. What will change that is enough people saying enough is enough and doing the hard work of making our world one where everyone is welcome, all communication is honored, and everyone is safe and valued. And that is going to take time, and there are going to be days, still, as we work to make that happen, where you, where I, will wish we weren’t autistic, because sometimes it just hurts.

But it will change. It’s changing now. And you shouldn’t, and don’t, have to. You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.

Written by Julia

May 1, 2012 at 4:48 pm

15 Responses

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  1. Merci. Pour mon fils, pour moi. On est dans le bon!

  2. Julia, you’re amazing. Just so freaking amazing. I’m the webmaster for the flash blog, and with your permission, I’d love to include you, either as just a link on the links page, or as a full post reproduced on the main site (linking back to this one). Let me know! This post is so incredibly important and relevant and amazing. :) (and apparently, my vocabulary needs a little bit of expanding…) But really, thank you so much for writing it. :)

    E (The Third Glance)

    May 1, 2012 at 5:08 pm

    • I think the flashblog is amazing. Feel free to include it, however works best for the page.

      Julia

      May 1, 2012 at 5:10 pm

  3. This is amazing and wonderful! Thank you for this. :-D I’m bookmarking this so I can find it again when it’s just…one of those days.

    wakingcanary

    May 1, 2012 at 5:58 pm

  4. [...] post was originally published at http://juststimming.wordpress.com/2012/05/01/truth-is/ and is reprinted here with permission from the [...]

  5. Julia, I was so excited when I received this new post (I subscribe so I got it on my email!) And then I read it and I was just overwhelmed by it and by you. I couldn’t comment. I had to sit with these feelings. And then I had to read your words again. I want you to know you were the first blog I found written by an Autist. Someone sent me a link to one of your beautifully written posts. I read it and had to remind myself to breathe because it was so powerful. I don’t even remember if I summoned up the courage to comment. I don’t think I did. But I kept reading and I read everything you’ve shared on your blog. My gratitude to you is something I do not have the words for. You literally were the beginning of an education and that education continues. It has changed my thinking and my life. This may sound hyperbolic, but I assure you it is not. I have written about this evolution a number of times on my own blog, but yours was the beginning and what a beginning it was! (E. can vouch for me!) Then you commented on the Slice of Life profile of my daughter, Emma and when I saw your name, I was thrilled. No, beyond thrilled. Ecstatic. And now you’ve written this… it is terrific and honest and powerful. Your words at the end – “You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.” are beautiful, and here is what I say to you – You are amazing and so much more than sufficient and lovable and you have helped so many (I feel I can say this with certainty because the beauty of being in my 50’s is that I know enough to know my feelings are not unique.) You have made such a difference to me and by extension to my daughter’s life, you actually cannot conceive of what a difference you’ve made. How could you? How can we really know what an impact we’ve had on complete strangers? But even though you cannot know, I need to tell you, so that some of what I’m saying, you will hopefully be able to believe and internalize. You are doing so much good, Julia. Just by speaking your truth. And for that, I cannot thank you enough.

    arianezurcher

    May 1, 2012 at 7:28 pm

  6. Wow, this was really profound! I don’t know what to say to do it justice, other than, great job!

    gkinnard

    May 1, 2012 at 11:57 pm

  7. Julia, you always manage to move me, but you really outdid yourself on this one. Well done. This is the most moving response to ‘curebieism’ that I have ever read. Thank you.

    bolthead0070

    May 2, 2012 at 12:09 am

  8. Julia, Beautifully and powerfully written. I love what you have to say, and I love how you say it!

    Dyanna Anfang

    May 2, 2012 at 12:47 am

  9. Hi- I hadn’t seen your blog until today. I came across it through a Facebook link. I will post your blog to my Facebook page. What you have written is so important in the discussion about acceptance. Thank you.

    https://www.facebook.com/MyAutisticJourney

    Michelle Sutton

    May 2, 2012 at 2:54 am

  10. Brilliant! Thank you so much for this. I especially love

    “I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault.”

    I’ve always thought of my life in terms of stories (not every waking moment, but especially when I’m thinking about how I’m doing and what’s going on in my life generally). There was a period of my life, in my late teens and early twenties, when I pretty much accepted that I could no longer be a protagonist. And it was a disaster – not only was I miserable, but I ran into all kinds of trouble letting other people call the shots.

    I think this post would be very useful to many young disabled people – many young very tall lesbians as well! :-)

  11. I hope you don’t get sick of hearing “Thank You—you have really helped me with your blog.” Because I mean it. Also, I hope it is okay that I quoted a few of your statements in my own blog today. You say concisely what I’ve been struggling to say for years & I wanted to share that with my readers who may have been confused…

    Juliet Dicaprio

    May 2, 2012 at 11:27 am

  12. Reblogged this on Walking Running Stumbling and commented:
    I want to share this amazing post by an amazing blogger, a woman on the autistic spectrum. While this post deals specifically with Asperger’s, it applies equally to situations where a person feels at a disadvantage for any reason.

  13. Thank you.

  14. You’re a very talented writer. Thank you so much for this lovely post. :)


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