She sits and stares and nobody there
Is the feel that she gets
Coming in on the air
From the muster of whispers
Who cluster around
And she sits like a stone on the ground
But she gathers up her trinkets
Sets each one in its place
And each one has a meaning
Never written on her face
She knows it without knowing
They reveal her full inside
She shows it without showing
There for anyone to find
She sits and stares and nobody there
That’s what they all say
Crowding round unaware
But her trinkets are standing
They point to her soul
One day they will show that she’s whole
theres this awesome feeling i get as i learn more about autism and speak to other autistic people and follow autism blogs. this amazing moment of finding out other people do the same ‘weird’ stuff i do. that it’s not weird at all. that it doesn’t matter if my allistic family and friends don’t get it, i know there’s gonna be other autistic people who know exactly what i mean.
not a specimen (2004)
He dared her to look at him
As if she knew what he was saying
Her chin cupped in his hand she shoved
She didn’t ask that day
What would be going down
He caught her arm as she pulled it away
Skipped stones on her empty eyes
She disappeared to let him look
Till he opened his hands
To let her scuttle on her way
I could barely get myself out, let alone all of us.
Running and flapping over green grass
Flapping and pacing the isolation room
Laughing, crying, screaming
I see you everywhere
I wish I could have made
A world that wanted us
I hope you can know
Beyond fear, hate, and despair
In the deep places most people avoid
Is the love that will help you survive
On Writing (circa 2005)
I am weak
I cannot hold up my head
Nor type without my arms supported
The effort of movement
Clashes with the effort of words
Clashing again with the effort of thought
When I move
Thought comes in formless swirls
No longer the crystalline clarity
That comes with stillness
I grasp at the remaining fragments
Struggling to piece them together
And turn them into words
I cannot predict my body
As it shifts from stiff to limp
From rhythmic movement
To rigid stillness
And staccato jerks
It gives little warning
And no apology
Luminous clarity changes suddenly
To searing pain
Detail beautiful enough for tears
Passing an invisible threshold
Giving way to electric fog
I am a collector of fragments
That sit within my mind
Weeks, months, years
Before settling into their places
In the patterns of my thoughts
I write as a historian
Not a reporter or newscaster
My specialty is remembrance
My mind can burn
With the desire to tell it as it is now
The drives of a writer and a poet
Clash with the mind of an observer
I pound my head and wordlessly yell
As if this will hasten the process
That changes experience to thought
Thought into words
Words into movement
Intricate lines that branch
On the shell of a tortoise
Marching in a straight line to the sea
But my body does burn
With the effort of this chronicle
Eyes flash on and off
And words recede
Head rocking from side to side
Legs undulate unbidden
Fingers flick rather than type
Fragments collect again
The poet flees
I struggle now
As words dissolve on all sides
To adequately display
The meaning of fluctuation
Easy would be
To call this hell
To evoke the overlay
Of several shifting principles
Unsynchronized with each other
With their abhorrence of change
A body here, a mind there
Each sense broken into pieces
Jagged electricity interrupting
As I burn in unceasing pain
Too easy it would be
To end with this description
As the inevitable flood
Of my internal rhythms
Drowns me out
As I try to shout over the waves
That shift through my mind
That I see waves and the poet
The rhythm and the cry
The weakness and the beauty
The struggle and the change
The fluctuating movement
The lines on the shell
Unpredictability and pain
I see them
They drown me out
They propel me
I shout over them
That I can’t see the tortoise
Without all of this
And as such
This must all be my home
I guess that’s a question I have…
…does anyone here remember a time “when words never grew on their own and thoughts were mere shadows in the distance”?
I know that many autistic people go through a phase like that and outgrow it, often at the ages of 4, 7, 12, 15, or 20. (Basically, the end of early childhood, the beginning of middle childhood, the beginning of puberty, or the beginning of young adulthood.)
I know that many other autistic people retain some amount of that phase, even as we grow able to create words and thoughts of our own.
But I’m curious… how many people remember that? Was it something that stayed with you? Was it something you lost forever once you developed thought or language? Is it something you miss? Is it something you hated, felt like a prison? Some combination of these things? Something else entirely? Do you remember the time when things changed, or did it sneak up on you?
Does that way of thinking still feel like ‘home’ to you, or is it foreign? Can you go back and forth? Do you feel like you’ve been shut off from it, despite desperately wanting to go back? Do you feel more like good riddance, it was hell on earth? Did you have to work hard to claw your way out of there? Do you still have to work hard? Do you naturally fall back to that state when you aren’t paying attention? Or do you only experience it in shutdowns? (Have you only ever experienced it in shutdowns, and can’t even remember a time when it was your natural state outside of shutdowns?)
All of these things and more, I am curious about.
Peas in a Pod
They flitted around the room
Each one’s hands dancing
In rhythm with the other
Though never once
Did the mother look upon her daughter
Nor the daughter look upon her mother
They danced, weaving in and out of the crowd
Their arms made the same motions
Their hands twisted in unison
Their bodies danced as if
They’d been dancing all their lives
They looked more like a mother and daughter
Than any mother and daughter I’ve ever seen
No man was evident
And no man should have been
Given how the pregnancy happened
They looked alike
So alike they could have been
Twin sisters with a 19-year age difference
Their love was so palpable
That everyone I knew
Looked their way
There was no way to avoid it
They bled love into the air
The way some people bleed anger or fear
And everyone in the room
Was better for their presence
I think about them now
Is the daughter still alive?
Is the mother coping with what life throws her way?
But they have resilience enough
To meet most situations head-on
I will always remember
When the mother circled around my table
To acknowledge my presence
Without saying a word
And without saying a word
My pattern of rocking altered
All on its own
To acknowledge her presence
And that was enough
For both of us
Without a verbal ‘hello’
That neither of us could muster
The mother is one of those people I love
Whose functioning is cobbled together by pieces
Who always surprises people
Either with what she is capable of
Or what she is incapable of
The reason I love people like this
Is I am one of them
And it takes one to know one
It takes one to see the giant gaps
Between what is expected and what is there
They would call us low-functioning
And they would say it was amazing
That we could do the things we do
Just because we climb the cliffs every day
And cobble together functioning
From the wreckage of the previous day
Our fingers bleed
But we do it because we have
No other choice
I love people like us because
This is my people
This is the people who understand
When I collapse in the middle of a presentation
This is the people who understand
When I can’t say hello
When I can’t type at all
This is the people who understand
That sometimes not typing is not a malfunction
Sometimes it’s a return to our roots
Where words never grew on their own
And thoughts were mere shadows in the distance
We’re up to $585 with the fundraiser, but we still have a long way to go. We’re trying to raise enough money to cover printing and publishing costs for a variety of formats so the anthology will be available in as many formats as possible.
Also, the official call for submissions will be out really, really soon. For now, folks thinking about submitting should know that it’s open topic, open format (length and style), and deadline November 15th this year. (For people who prefer or need more concrete or specific rules, I will be happy to give those on request. My email is email@example.com.)
Making sure that people with a variety of communication styles can submit to the anthology is very important, so I don’t want to specify certain types of writing (especially linguistically privileged academic writing) or lengths (since many people can’t write longer form things). We’ll be welcoming submissions ranging from very short statements to longer formal essays and everything in between.
If you already have something you want to submit, you can email it either as an attachment or in the body text of an email to firstname.lastname@example.org.
I know a lot of folks in our community, especially disabled POC, QTPOC, etc. are poor or otherwise low-income, so I don’t want to pressure anyone into giving money who can’t afford to.
BUT if you *can* give anything, every dollar does help. And if you can’t give money, we could still use all the help possible in getting this out to people who do have money to give, and in getting the word out to other autistic POC who may want to submit writing and stuff for the anthology.
Thanks so much for all of the reblogs and likes! Let’s keep the momentum so we can make this anthology become an actual thing.
I’m editing this awesome new project in partnership with the Autism Women’s Network, and I hope folks will consider donating if they can to help make this a reality.
Stay tuned in the next few days, because we’ll be releasing the formal call for submissions then! Until the official thing goes out, questions can be emailed to email@example.com. Thanks everyone!We matter. We invite you to support us in amplifying the voices of autistic people of color.
I am a proud autistic of color working with the Autism Women’s Network to create the first ever anthology of writings by autistics of color about our lives, our experiences, our histories, our communities, our struggles, our passions, and our resilience. Our stories deserve to be told both for us and for future generations that will come after us. They are stories of segregation in education, police brutality, families of birth, adoption, and choosing, ableism connected to racism, finding community, making home, survival, and resilience. They are stories of being autistic in a neurotypical world and stories of being racialized in a white-dominant world.
Disabled, queer, and racialized activist Mia Mingus urges us to leave evidence that we existed so that our stories and our lives will not be erased or forgotten. The Autism Women’s Network is committed to supporting projects that connect disability rights to other struggles and movements. This anthology will help us explore new ground for autistic communities of color whose stories need to be told.
As an autistic person of color, it’s not uncommon for me to go to autistic community events and find myself to be the only non-white person there or sometimes one of only a few. Yet it is impossible to separate my experiences as autistic from my experiences as a transracial East Asian adoptee. Here’s the important part — I’m not the only one. We are everywhere. Indigenous and native, mixed-race and multiracial, Black, Brown, South Asian, East Asian, of color, racialized — and autistic. Our lives and our stories matter.
We invite you to support us in amplifying our voices.
What We Need
We are raising money to cover the costs of printing and publication, which include print and alternate formats, ISBNs so we can place copies in libraries, and small stipends for the project leads.
Additional funds raised will go toward increasing availability of alternative formats, including online access. Any further additional funds will go to the Autism Women’s Network to support other projects empowering autistic women.
Risks & Challenges
Because we are soliciting contributions from people who may have multiple disabilities, chronic pain or other illnesses, and language and communication impairments, it is possible we will fall behind schedule. We aim to finish publishing the anthology in 2015, but may need to be flexible about deadlines.
Who We Are
My name is Lydia Brown (though you might know me better as Autistic Hoya). I’m an activist and writer focusing on violence against multiply-marginalized disabled people, including hate crimes, policy brutality, and prisoner abuse. At present, I am serving on the board of the Autism Women’s Network. I am also president and co-founder of the Washington Metro Disabled Students Collective. I have worked with the Autistic Self Advocacy Network’s national office, and am a past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, I was honored by the White House as a Champion of Change for disability rights.
The mission of the Autism Women’s Network (AWN) is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women. AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals. AWN recognizes and affirms the gender identity of each individual. AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work.
Other Ways You Can Help
You may not be able to donate money, but that doesn’t mean you can’t help:
- Ask folks to get the word out and share our fundraiser on social media and in your network! (Indiegogo has some nifty buttons that let you do that.)
- Consider submitting your own writing or suggesting autistic people of color who may be interested in submitting!
Thank you so much for your support. Onward!
We’re now over $2,600 for the fundraiser, but still have a whiles to go. If you are able, we would appreciate anything you can give.
We also have the official guidelines up. They’re at the Autism Women’s Network site. We are seeking contributors who identity as non-white and autistic (especially people outside the U.S. and people with additional marginalized identities). Submissions may be in any non-fiction or poetry format, of any length, and on topics ranging from disability theory to racism to daily life. The guidelines page has a list of suggested topics, but you don’t have to use one of those. Submissions are due by 15 November 2014 to the editor, Lydia Brown, at firstname.lastname@example.org.
Just found this poem again, because it’s a similar topic to my LHP submission. This isn’t a universal thing among autistic people, but for those of us who do experience it, it’s very important to us.
[Allowed to reproduce the poem itself, as long as credit goes back to Our Voice, newsletter of Autism Network International.]
"Autispeak" by Jim Sinclair
This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every word has weight, and no thought is ever lost.
This is the language we speak,
we who embrace without touching,
This is our dance without bodies
Where every touch has meaning, and no glance is ever wasted
This is the language we speak,
we who can see without looking.
This is our star behind darkness
where velvet rainbows sing, and no tear falls unseen.
This is the language we speak, we who can float outside time
This is our home beyond nowhere
where shadows’ footsteps fall,
where memory echoes from the future,
and comfort flows back from the past,
where smiles have no need for faces
and warmth breathes from the frozen places.
This is our source, our destination, where every song is heard, and no soul shines unknown.
Fun with being nonverbal in public, and the way strangers rapidly make judgements.
- Woman: Hi, can you tell me the name of this street I'm on?
- Me: (points to mouth)
- Woman: Oh, you can't talk, right?
- Me: (nods) uh-huh
- Woman: Oh but it looks like you can talk a LITTLE, right? Could you tell me what street we're on?
- Me: (shakes head)
- Woman: But I know you can talk a little, I just heard you make a noise. Um... is (name of store) anywhere near here?
- Me: (points towards store)
- Woman: Thank you!
- Me: (in head) WTFFFFFFFFFFFFFFF
That’s exactly why I do it. Because there was a time when I could not speak out, and others did, and it saved my life. So I did everything I could, to do that for others, when my communication abilities and my strength to stand up in public and say shit, caught up with me. I take it really seriously. And I am glad that there is anyone, even one person, that I’ve helped in this way, because it makes me feel like I’m giving back to the world a little bit of what the world gave back to me.
Feeling less alone is not selfish. We are a social species. For most if not all of us, feeling less alone is a vital part of life, without which we can develop all kinds of emotional and mental problems. I started my collection of books by autistic authors (now over 120, and in need of at least 80 more) because I wanted to feel less alone. And even to go to my bookshelf and look at my books reminds me I’m not alone, even when I don’t read them.
Luckily I now know people who are a lot like me and are actually friends, not just people I read. I hope you find some of those too. They have made a huge difference in my life. Just make sure they’re real friends, there’s a lot of people out there willing to take advantage, as I found out the hard way. But seriously, I hope the best for you, and every time I get a message like this it makes me feel like maybe I’m doing something right. I’ve gotten a few recently and they make me cry, that I can be part of something, just a part of something, that could make people feel less alone.
(I’m tagging this with a lot of autism tags. I don’t know if you’re autistic. I’m tagging it this way because those are the ways that I felt less alone when I read other people’s stuff. You’re not.. obligated to be autistic or something just because of how I’ve tagged this.)
I’m actually not criticizing their behavior as much as I’m criticizing the entire attitude that they went into the picture with. That is not something that can be solved by giving advice over a tumblr ask. But I actually find what you’re doing here pretty offensive.
Basically… I asked for help explaining something I can’t name, or explain, myself, very well. I did my best to explain and then let other people chime in trying to help me find the ideas and the words that I wanted — just to describe what was happening, not even to fix it, just to describe it.
You’re saying I shouldn’t be able to do that, unless I’m willing and able to fix the entire problem.
That is offensive to me.
It has always been offensive to me.
When you have a bunch of people working on a problem, you have…
- People who are trying to simply figure out what the problem is
- People who are trying to articulate what the problem is
- People who are trying to understand the social dynamics behind the problem
- People who are trying to put this all into a broader context of power relations and the like
- People who are trying to solve the problem
And much, much more.
You’re saying that if we don’t have people who are actively willing, able, and trying to solve the problem, then the rest of what we’re doing to work on the problem is useless. You’re also saying that the most important person in this situation is the staff person, and that the most important thing we can do is tell the staff person how to behave so that they don’t look like that, superficially, in a photograph. Even though the problem was never how they looked in the photograph. The problem was the attitude they carried into the photograph with them.
I have a really skeevy picture of a guy who molested me, with his arm around me. Most people who’ve seen the picture agree it looks seriously skeevy. And most people who’ve seen the picture would agree that the problem is not the way he looks in the picture, the problem is that he was a child molester who was actively molesting me during the time period the picture was taken, and that his attitude as a child molester spilled over into the photograph making it look really creepy.
Now I’m not saying that what this staff person did was as bad as a child molester. I’m just trying to draw a comparison to something that is so far beyond the pale that hopefully anyone would understand why “giving child molesters tips on how not to look like child molesters in photos” is not an answer to anything.
If I did want to fix the problem, I would embark on a serious educational campaign aimed at the staff person.
I would lend her two of my favorite books by Dave Hingsburger, Power Tools and First Contact. Then I would lend her I Witness: History And a Person with a Developmental Disability, as well as A Real Nice But and A Little Behind. All by Dave Hingsburger. I would show her a video called The Ethics of Touch, also by Dave Hingsburger. I would point her at davehingsburger.blogspot.com.
Why Hingsburger? Because he’s been that staff person. I’m sure he has photos like that. But he has grown and learned and changed in ways that most staff of that type don’t. He has done some of the worst atrocities that have been done to disabled people, and he has managed to grow and change and become a truly better person as a result of relentless and ruthless self-examination. He has examined the power he wields over his clients — even now that he is disabled himself. He has examined it in depth. And he has done so in a way that is easily accessible to other staff — in a way that a client would have a lot harder time getting the ideas into their heads, because of defensiveness and the like.
All of which is why my Hingsburger books have a horrible habit of walking away from my apartment and needing to be replaced, sometimes at great expense if they are out of print.
Reading a bunch of Hingsburger books won’t transform anyone overnight, but it’s a start. It helps people begin to wake up. Even if the first feeling they get as they awake is this niggling feeling that’s uncomfortable and that they want to put away somewhere.
Understand something here… I am not one of those people who says “I’m a member of a marginalized group, it is not my job to educate you, go find Google and educate yourself.” I know full well that Google is not easy to use in that manner. I know full well that some marginalized people — people who are willing and able at the time, of course — need to be among the ones doing the educating. I am willing to do the educating myself, at times.
But I don’t put up with this bullcrap about how if I don’t educate you right now in exactly the way you want at exactly the time you want then I’m doing something horribly wrong and unfair. And I don’t put up with the bullcrap that says that the experience of the staff person here trumps my experience as the client.
Remember, I am one of the people in this photograph. I feel dehumanized and neglected and treated like dirt because of this photograph, and I don’t believe the woman in the photograph has any idea that I feel this way at all. I don’t think she has the self-knowledge to understand what she was doing during the photograph, or during any of our interactions with each other.
But because I am one of the people in the photograph.
And because I find the photograph a traumatic reminder of what it means to be a client of the mental health/developmental disability system.
It is not my fucking job to track her down with a stack of Hingsburger books and hope she doesn’t slam the door in my face.
You say it’s unfair of me not to educate her, or at least not to educate those like her, right here, right now, the moment that I’m trying to make sense of my own trauma. And you’re not even remotely aware of the fact that this is traumatic, that it is not just some neutral photograph that was taken one happy day, that it has stuck in my mind for eighteen years for a reason. That I have kept it in my house, always hidden behind sometime, for the sole purpose of reminding myself what it means to be a client and what it means to have staff. The same way, for a long time, I kept an old restraint cuff stolen from a mental institution, and kept it in the back of my closet. Just to remind myself the meaning of captivity.
For me, this picture is the meaning of community-based captivity rather than institution-based captivity. It’s about having a keeper following me around. It’s about the way my keeper feels good about herself. It’s about so many things I can’t even name them. And it’s about something awful that happened to me that you’re not willing to acknowledge because you’re too busy worrying how she feels.
If you’re truly interested in freeing your mind from staffishness, read everything Hingsburger ever wrote and engage with it as carefully and critically as you can, applying it to your own life. He’ll be wrong about somethings but spectacularly right about others. He is not a normal disability rights writer. He doesn’t follow the party line on anything. But he knows things that very few disability rights writers are willing to even acknowledge the existence of. And he exists outside of the realm of mental widgets, those constraints people put on their ideologies to keep from having to think too hard about anything. I will take him over twenty bog-standard disability rights advocates any day.
But other than that? Stop bothering me about this. I knew from the beginning that your request for help in what not to do to look like this in photographs was not a request but a demand. That’s what being highly sensing will do to you. I’m glad you’ve basically admitted it, though. That makes everything else a lot easier.
I’m fucking recovering from meningitis. I have aspiration pneumonia that I’m barely recovering from. Last time I tried to write this letter to you, I had to stop several times in the middle because I was literally hallucinating from delirium. My father is still dying and I still haven’t spent as much time with him as I’d like to. All of these things are things that matter a lot more to me than whether you or anyone else wants to avoid looking staffish in photographs. If you want to not look staffish, you have to not be staffish, and that’s a lifelong, difficult lesson that will take everything you have to unlearn. You won’t get it from me or anyone else.
Maybe someone would be willing to hold your hand through this process. I am neither willing nor able. I think it’s great that some people are willing and able to do those things. There are times when I have done it for others, although usually they have been my own staff who I wanted to get some things straight with about power relations before they started working for me. But the demanding way you have come into this conversation pretty much ensures that a lot of people are going to be turned off and not want to deal with you.
Because this conversation was originally about a bunch of developmentally disabled and mentally ill people trying to articulate what was going wrong in a picture. Then you jumped into the middle and made it all about the staff person, all about how not to look like the staff person in that picture, as if the looks were the problem. And people aren’t going to take kindly to that.
Also, for those not following this discussion, this is the original post that started the whole thing off.
Shortly thereafter I started getting anon (of course) “requests” to show people how not to be like the staff person in the picture, and when I indicated my dissatisfaction with this way of looking at it… all of this happened. I’m not sure if I’m satisfied with my reply or not. Understand that most of the reply is not for the benefit of the person I’m replying to, it’s for the benefit of bystanders. I don’t know who I’m replying to, they could be a very good person overall, but holy crap I don’t need this at this point in my life, and I’m not going to just sit here and go “Yes, it was unfair of me to judge the staff person and I need to give you a cosmetic solution or I’ll be even more unfair.” No. Life doesn’t work that way.
Yeah something like that is part of it.
(cont) I’m 19 and I’ve had a relatively fortunate upbringing with very accommodating family. So is it possible I’ve never been in a bad/overwhelming/unpleasant enough situation to cause me to go nonverbal? Thank you if you are able to help ~
It’s quite possible that you really are 100% verbal, or close enough that it doesn’t matter. (It’s also possible that the times that you’re not verbal, have coincided with times when you didn’t really need to be talking anyway. That happens too, where autistic people’s brains plan their downtime really efficiently.)
Either way, it does happen, it’s just rarer than people imagine for people to be 0% or 100%. But both do exist. I didn’t mean to make you feel like a total outlier though.