Just Stimming…

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

Confession Of A Woman In A Refrigerator (Speech Without A Title 2.0)

with 19 comments

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

So the thing is, most of this belongs at the bioethics conference, but, but, jesus.

I remember being in high school and not being sure why, exactly, college had to be a thing, because I was going to be dead by the time I was thirty.

(Two-thirds of the way there and I still can’t see more than ten years down the line and maybe, maybe a small part of what I’m doing is motivated by now or never, I’ll do this right.)

Why would I be dead by the time I was thirty? Well, every other girl like me never seemed to make it to womanhood, it only stood to reason.

At some point, and I’ve told this story so many times and it never stops making me want to cry, I started hearing about other disabled people. People who were older than me, people who weren’t about this thing is going to kill me one of these days, people who weren’t about living with, living with, living with, not dying from disease, people who were disabled and alive and not sick, not dying, but raising hell and building lives and screaming, screaming, screaming when we were being killed. 

People who used words like we.

I thought, we, yes. We. Okay. We can make this work.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

When you are disabled, when you are traumatized and vision-impaired and autistic, even and maybe especially when you haven’t been given those access codes yet, you learn to see yourself as the walking dead. You are vast swathes of nonexistence, cut off and left for dead at every missed milestone and swapped pronoun and bruised shin and scar on your face. There are Other People, Normal People, People, and then there is you,  and you are defined by the parts of yourself that match to everyone around you, and then the vast swathes of nothing. Disability is absence, disability is inability, disability is death, and you are a woman in a refrigerator. 

It takes you a while to learn that you aren’t the one who put you in the refrigerator. 

It takes longer to learn that it wasn’t your body, either.

A lot of us never get to the point where we can say it was you, you tried to kill me, you made me think I was dead, you screamed about the injustice of putting me in a refrigerator while you, you were the one killing me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

And you made me think it was my fault.

One day, I will write a speech that isn’t this one, this choked and untitled remixed stew of you tried to kill me, and you made me think it was my fault, and now you will listen.

When you’re disabled, you see death everywhere, and it isn’t because your body stands out or doesn’t stand at all, it’s because everyone talks about you like you’re in a refrigerator, like you’re not real, like you’re dead.

And it kills you.

They kill you.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

What I am trying to say is that of course, of COURSE, of fucking course we notice, because we can’t not, because the bioethics conference has one day for beginning-of-life issues, where they try to cut us out, and then a day for end-of-life, for those of us who slipped by, because last week twins in Belgium asked the state to kill them because no one ever told them that they didn’t have to go into the refrigerator. 

What I am trying to say is, my friend has a friend who uses a wheelchair and didn’t get screened for breast cancer because she’s already dead, right? 

And you, you, every single one of you who said we are helping, we are saving you, something cruel and unjust has been done, and then you made disability mean death and shoved us into the fucking refrigerator. You killed us.

I didn’t know how to die until you taught me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

Question: if nobody but disabled people know that disability and death are distinct and not overlapping concepts, does anyone really know? Or are we just trees in the forest, falling (well, growing, would be the point,) with no one to hear?

What I am trying to say is, I am now Someone Who People Meet, and I know that there is a vast we out there, and I know that I am living and a woman and disabled and that none of these contradict, and I dragged myself out of the refrigerator by the skin of my teeth and said you will listen to me now, and this evening I felt sick when some friends offered to transcribe something for me, and I still can’t see myself making thirty.

And what I am saying is, this thing is going to kill me one of these days, and what is going to kill me isn’t going to be my back screaming at me or my eyes turning off or my head going through a wall, it’s going to be everyone who says we’re just trying to get you out of your refrigerator

I pulled myself out of the refrigerator you put me into the day you started grading people into people and cripples. I pulled myself out the day another woman in another refrigerator told me, like passing on a secret, we aren’t dead yet. Someone let me out of your refrigerator, and you can never put me back in there again.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

I’m disabled. I’m not dead. I’m not in a fucking refrigerator. I am living, living, living, and I am screaming, screaming, screaming. 

And, just in case you should care…

Yeah. I noticed.

About these ads

Written by Julia

January 24, 2013 at 5:39 pm

19 Responses

Subscribe to comments with RSS.

  1. crying. thank you.

    billierain

    January 24, 2013 at 6:07 pm

  2. Disability and death, disability and death. No, we are not dead, we are not dead, we are here here here and we notice. We hear what you say and it hurts and it’s not OK and we’re screaming.

    Alyssa (@yes_thattoo)

    January 24, 2013 at 6:14 pm

  3. This is devastatingly beautiful.

    Lydia Brown

    January 24, 2013 at 6:53 pm

    • I want everyone I know to read this and to sob while reading it because the way you write is that cutting.

      Is it wrong of me that I want to hear this performed as a spoken word performance? (I’ve done spoken word, and this is the kind of writing that screams to be heard.)

      Lydia Brown

      January 24, 2013 at 7:01 pm

  4. This is like a knife. I’m not a writer so I can’t describe it well, but this is fantastic and sharp. I’m so honored to be able to read your writing.

    Nan Rosenberry

    January 24, 2013 at 7:11 pm

  5. You are alive. I am alive. I am sitting here screaming, too. By all that is, we will be heard. Fuck them. All of those that think we’re dead. All of those that think we’re less than. All of those that think we’re not worth saving, more or less knowing. We will be heard. I’ll go out with a rebel yell.

    Forgotten (@TwinsMa)

    January 25, 2013 at 2:23 pm

    • As a mother of an autistic, I have screamed too. It is painful to be told ABA is the “only” evidence based treatment. What they don’t say is that ABA is the ONLY treatment they have even studied! I and a classmate in grad school who is also a mother of an autistic have screamed too. Many, many moms are screaming. WE know you are wonderfully made by a Creator who knew EXACTLY what He was doing. You will NOT go out at all, because several clinical psychologists are also mothers of autistics, and we don’t WANT our kids to change. We see the gift that autism can bring to the world.

      This writing is a great example of that!

      Maria Taheny

      May 12, 2014 at 11:24 am

  6. I cannot tell you how much hope you give me. Please – and I know how hard it can be – stay with the fight. We are so few in number who get it. You are just so perfect. Just the way you are.

    nvadvocate

    January 28, 2013 at 1:51 am

  7. You have completely taken my breath away. I cannot think of anything but the screaming. And I agree with Lydia Brown..it is exactly the right piece for spoken word..but why??It works so very well as is..maybe better because it gives voice to the ?voiceless?

    Lisa Cautillo

    January 30, 2013 at 2:33 pm

  8. I’m 20 and I went to college for a year then dropped out for the same reasons you don’t understand why you should go to college. I thought I was the only one who felt that way.

    Allegra Keys

    March 7, 2013 at 2:03 am

  9. And some people say “Well, *someone’s* got to be in the refrigerator, and you’re at least used to it,” and squeeze a jar of mayo in with you, and others say “Of course you can get out,” then give you ridiculously complicated instructions for dismantling the refrigerator from the inside, but they’re on the outside so you have to sort of turn it all inside out and backwards before even trying to figure out how to get started, and that blows all your spoons. You try and talk other people into moving into the fridge so you can leave, or even just sharing your fridge, so you can have a bit of company, but you never get any takers, at least not for long. Sometimes you might get “help” in the form of suggestions on how to turn the thermostat up a bit and put the ketchup bottle in front of it so nobody notices it for a while, to make the fridge a bit easier to live in, even though you’ve been doing that for years. And you talk to another woman in another refrigerator about having to clean up the rotten fruit someone stuck you with again and you’re both complaining about how nobody else actually comes *in* your fridge, or notices that they just dropped a jar on your toe and can’t hear you scream because they slammed the door so fast.

    And then one day someone new’s hanging around the door, and you go “Hey, how’d you like to live in a nice fridge? Bit chilly, but plenty of food, and nobody’s really fighting for space!” and they look at you strangely and go “What the hell are you doing in there? Women don’t live in fridges,” and proceed to tell you about all sorts of things you can do outside a refrigerator. You find out that you don’t necessarily have to dismantle it entirely – you can just push the door open and go out. You might have to push back, if there’s someone there, and it might piss them off, but *they* don’t have to live in a fridge, so why should you? They can just deal with their food some other way – have you ever seen them care about yours?

    So you go back to your neighbour in the next fridge, who’s been living in one longer, and ask her “Why *are* we living in refrigerators?” and she doesn’t really have a good answer for that either, aside from the fact that it’s simply more convenient for someone else that you do. And you both decide that yeah, it’s time to start pushing.

    Kalina Ressek

    May 14, 2013 at 8:13 pm

  10. Wow. Thank you so much. Just awesome.

    aspiehepcat

    June 2, 2013 at 6:37 am

  11. So, so, so good. Am I allowed to translate it into german and post it with your link?
    Greetings from germany.
    Ruusu.

    tuulikkinoita

    August 4, 2013 at 7:24 am

  12. Hat dies auf Ruusu in Tuulikkis Wald rebloggt und kommentierte:
    Add your thoughts here… (optional)

    tuulikkinoita

    August 4, 2013 at 7:26 am

  13. […] For the sake of my friends, for the sake of your children, for the sake of everyone who will ever live in this society while autistic, I’m asking you to learn to see it, and to stop it. I’m asking you to understand that while compassion and empathy for people who commit crimes may be important to you, and while making sure everyone has the services they need may be a struggle you deeply care about, and while you may find societal expectations of parents to be oppressive and harmful, you cannot – must not – advance those worthy causes at the cost of devaluing autistic lives, of contributing to a culture that treats them as burdens. I’m asking you to please, please be quiet and listen. Here’s a few links to start you off. —– Here, try on some of my shoes. Are you at peace with your decision? Confession of a Woman in a Refrigerator […]

  14. Reblogged this on aspielazuli's Blog and commented:
    When autism REALLY speaks: A lively example for self advocacy.

    aspielazuli

    February 19, 2014 at 4:58 pm

  15. Sometimes our challenges make us scream, and the screaming is as important to the journey as the dancing. It’s the screaming that reminds us that we are alive.

    Bethany @ Puzzled No Longer

    http://puzzlednolonger.org

    brosselit

    March 29, 2014 at 10:39 am

  16. So very very good. Keep screaming – I’m listening.

    Linda Sheldon

    April 30, 2014 at 10:57 am

  17. Probably some of the most stunning prose I have read in a while. Thank you for writing it.

    i was most struck my the bioethics paragraph. I have an autistic 12 year old and I have changed the way I address and teach him due to the courage you and others in the autism culture have shared. It is a way of being, not a disability. People need to understand this.

    Maria Taheny

    May 12, 2014 at 11:17 am


Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 763 other followers

%d bloggers like this: