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Space Lettuce

with 3 comments

[Prepared text of a speech given at the Autistic Self Advocacy Network’s 10th Anniversary Gala on November 16th, 2016]

Hello! Hello, and thank you all so much for being here. How’s everyone doing?

Great. Great, that’s wonderful. I’m so glad to see you all here. We had a lot of internal conversations, over the last week, about how to go about throwing a party after the events of November 8th. And it came down to this idea, and I think it’s crucial, that joy has not gone out of the world. This is a somber time. We’re all feeling pretty grim. And as we look around and talk to each other and begin to figure out what we’re going to do now, it’s critical, it’s absolutely critical, to also set aside time to reflect on and commemorate and celebrate how far we’ve come and what we’ve done. Because, as Ari has reminded us, as Chai has told us, and as our awardees are about to demonstrate, we have come staggeringly far.

We know that change comes inch by inch–slowly, painfully, at an exhausting grinding crawl, and then sometimes all at once. We cannot move forward on grim determination alone. My job for these next ten minutes is to talk to you about what comes next, about what we do now, about what ASAN is planning and preparing for, and I have to tell you that the first thing has to be joy. We have to be able to remember and celebrate our wins and the truth that we fight for. We are looking at a long, long haul, and we’re only going to make it if we bring our joy and our love with us.

When we’re preparing for a trek such as this, it’s important to know that we cannot go it alone. The work of building strong, committed coalitions between the many communities which overlap with and make up the disability community is what will sustain us through the next few years. To return to a truism, “We must, indeed, all hang together, or most assuredly we shall all hang separately.” I am speaking to you as a disabled women, as a lesbian, as someone who loves and works and lives with trans people and people of color and people from different socioeconomic backgrounds and faiths and nationalities. We can hang together, or we can hang separately. These are our options.

Working in coalition, we have to mobilize our grassroots, right now, immediately, to defend and advance the progress we’ve made. Protecting the affordable care act. Medicaid. Deinstitutionalization. Self determination. Access to justice. As you can see in our annual report, ASAN has been systematically developing our capacity to produce accessible advocacy resources–guides to policy and action that people with cognitive disabilities, our families, and really just anyone who isn’t a lawyer can read, understand, and use. We have to build that Hidden Army, and grow our grassroots in places we haven’t before. In the past, ASAN has done a lot of very wonky policy work, and we certainly plan to continue that–let me know if anyone here wants to geek out over quality measures for MLTSS, and I’ll be there in a second! But now more than ever it is critical that we are giving our grassroots the information and the tools they need to advocate, to participate in our civic society, and to have not just a say, but the final word in decisions about our lives and our futures. Nothing about us, without us has never mattered more.

So we’re going to produce materials explaining what a bloc grant is, how public comment periods work, and how to visit your senator in their district office. We’re going to collect people’s stories about why the ACA and coverage of pre-existing conditions is so important, and we’re going to mobilize our networks to ensure that the healthcare we fought for eight years ago stays in place. We’re going to work with other organizations focusing on civil rights, voting rights, and access to justice. We’re going to make sure that whenever the minimum wage is discussed, disabled workers are included and subminimum wage is abolished. We’re going to keep fighting for Olmstead implementation and deinstitutionalization, because now is not the time to give up on life, liberty, and the pursuit of happiness. And we’re going to keep advancing our work in supported decision making and self-determination, because making choices is a human right, and human rights don’t come with 4-year waiting periods.

It’s going to be hard. Yes.

So we’ll do what’s hard.

We have always overcome impossible odds. It is something out of science fiction that we exist at all. Autistic self-advocacy, self-advocacy, disability rights and the community we have built–all organizing is science fiction, as Walidah Imarisha said, and when we organize we find ourselves  building a new world. I draw strength and conviction in equal measure from the fact of our rich history. We have done so much. In just the last few years, we’ve seen an increased acknowledgement and acceptance of the fact that cure, as a concept, is not an ethical–or scientifically plausible–response to autism. Can you imagine? If you had told me five years ago that Autism Speaks would remove the word ‘cure’ from their mission statement this year, I would never have believed you. We have a lot left to do there, but we did that. The number of people with disabilities living in institutions has shrunk to a bare fraction of its peak. We did that. We defined what home and community based services mean, and as a result, the quality of life for people receiving those services has and will continue to increase as we restore autonomy, self-determination, and basic human rights. We did that. How long have we worked for those things? How hard did we fight? Is there a single person here who could call it easy?

There is so much more to be done. Even for each of the examples I’ve cited, enormous amounts of work remain–autism acceptance and self-advocate representation must replace words like “treatment” and “prevention,”; our people still trapped in institutions must be freed; we all know far too many people living nightmarish lives of quiet desperation in what we call on paper a ‘community,’ and of course even one person in that particular hell would be intolerable. The work ahead was already unrelenting, and as we look at the next few years, I think we all feel a little knocked back, a little desperate, a little panicked that after everything we’ve done, it could all be unravelled.

But when I think about our community, and when I think about our trajectory, I am still filled with hope.

We’ve built something incredible, something that has defied the odds, and we’re not done yet. We’ve fought hard for our existence. We’ve fought hard because the idea of ASAN is important: the idea of an organization run by and for autistic people ourselves, an organization capable of sophisticated advocacy at a local, state, and national level, taking on policy and legal challenges and working to ensure that wherever and whenever issues impacting the lives of autistic people are discussed, we’re there–not just sitting at the table, but leading the discussion. That idea is important, but it’s an idea we’ve fought to turn into a reality because it comes with tangible, real-world consequences. Self-determination, access to healthcare, community integration, communication justice–these are not academic theories but lived realities, and the policies we make and the arguments we have directly impact people’s lives. We are the organization that cares about the details, because we know that the details are where our lives are lived and lost. And as long as that’s true, ASAN needs to exist, bringing light to those details and pushing for a better world–now.

Prior to last week, when I was working on this speech, I had a great story to tell you about 2 different futures. That story is still true. So I want to talk for a minute about stories, about the future, and about the stories we tell for what the future can look like for autistic adults, adults with intellectual and developmental disabilities, adults with significant disabilities–whatever label we want to insert here. The stories we tell about disability, about autism, and about our lives set our expectations, and those expectations set up our futures. And right now we have stories for 2 starkly opposing visions for what we think life can look like for autistic adults.

The first vision is all about safety. Safety. Our best hope and our biggest expectation, we are told, is to be safe. In this vision, we are safe! We are so, so safe. Our housing is safe–designed specifically to keep us safe. Safe, special housing, with all of us in one place to keep us safe. There are devices that can track us to ensure that we never venture beyond safety’s borders. We have guardians, to ensure that all decisions related to us are sanctioned and sound and safe. If we work, we are working somewhere safe, of course, optimized to us and our needs and the needs of our also autistic, also disabled coworkers–safely supervised, of course, by someone without a disability. Thank god. We are kept safe in a cocoon of specialized services, cradle to grave, from the behavioral modification that teaches toddlers to stop flapping for their own good all the way through to the adult ABA that providers assure us is really just person-centered, since the reinforcers are tailored to our specific behaviors.

We are so, so safe.

Now, in case my tone hasn’t tipped my hand, I should clarify that this is obviously a story that ASAN and self-advocates find to be deeply dystopian. But it is difficult to articulate an anti-safety agenda, as it were. Safety is good! We want people to be safe! It’s an understandable motivation! And yet we know that safety isn’t safe. We know what the abuse rates for ‘safe’ segregated placements are. And we’ve seen this before. We have a century and a half of history showing us that institutions, campuses, farmsteads–whichever you’d like to call them, and when you line the descriptions up over time it becomes impossible to tell the difference–aren’t safe, even if they have a lovely pool and a beautiful garden. Any time you take a group of marginalized people and put us together and isolate us, safety leaves the equation. Every time.

So when we are choosing between possible futures for our community, I think we can do a little better than safety. Certainly our community deserves better. But what would that second story look like? What stories do we want to tell?

I want to tell stories with unlimited options. I want autistic people to be safe–but I also want us to be happy, self-determined, included, valued, and unremarkable. I want our lives and our happiness to be commonplace. I want us to be people–we are people! With boring, ordinary lives. Lives that we are in charge of. I want each of us to be free and supported to be living the best life for each of us. I want the same thing we want for everyone else.

And, handily enough, I believe we have a right to that. I have a right to be in charge of my body and my life. I have a right to live free of abuse and neglect and discrimination. I have a right to make mistakes, take risks, and to be bored. I have a right to participate, to access the same things my peers access and live the same boring, ordinary, beautiful life.

And I know that right now, on November 16th, all this talk of rights feels like science fiction. But listen, we grew lettuce in space this year. Did you know that? We grew lettuce in space this year. We are living science fiction. We can do this. We’re already doing this. The ADA generation has grown up, and with the strength of disability rights law at our back and the blessings of our community in our hearts, we are changing what the world looks like. We’re changing who gets to be in the story. We’re changing what the story is.

This is not the end. This isn’t even the beginning. This is the long, hard middle that gives every story its heart, its meat, and its staying power. We are beautiful and we are strong and our shared humanity is at its best when we’re all in. And that’s what we’ll be working toward for the next 10 years.

Thank you.

Written by Julia

November 17, 2016 at 1:48 pm

Posted in advocacy

Dangerous Assumptions

with 37 comments

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

Written by Julia

December 21, 2014 at 4:39 pm

The Loud Hands Project

with 12 comments

So I’ve been busy.

INTRODUCING: The Loud Hands Project.

Our Story:

The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.

Our Impact:

The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us—typically, upon graduation, it actually gets worse. This must change.

The Loud Hands Project is a structured, multi-facetted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands”—autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.  We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

How You Can Help:

We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation here—every little bit helps!

Spread the word! Check out the share tools on our page, and please use them! You can visit our Facebook page, tumblr, and twitter too, and tweet about the project using the hashtag #loudhandsproject.

Written by Julia

December 26, 2011 at 12:15 am

Response

with 20 comments

When I was a little girl, I was scared.

That sentence has taken two months to write.

When I was a little girl, I was scared.

When I was a little girl, I was a lot of things. I was functionally blind, and other kids teased me about my huge, staring eyes. When I was a little girl, I was somber. When I was a little girl, I was remote. When I was a little girl, I was devout.

When I was a little girl, I was scared, and I was alone.

*****

I don’t know how to tell you about growing up scared and alone, except that I don’t want to, and maybe that says enough. I can tell you, though, what changed. What changed is that I was fifteen, and I found this.

I was fifteen, and I spent months circling Amanda Baggs’ site, skimming the front page (the background and url were different then,) afraid to click on any of the posts, testing and tasting the words autism and autistic and okay over and over in my mouth. I had found someone like me. I had found someone like me, and they were fine.

It was months before I could look at this straight on, accept it, and click a post to read. Eventually I was brave.

When I was fifteen, I stopped being alone.

When I was fifteen, I stopped being alone, and that meant I could stop being scared.

*****

A little more than a month after I wrote Quiet Hands, I woke up and found that the number of hits on this site had erupted. Quiet Hands had gone viral, and there were a dozen comments waiting in moderation, links all over facebook, emails. I was bewildered–it was a stupid, personal post I’d written in the middle of the night to process a flashback a terrible character on a wonderful show had triggered–and overwhelmed by the attention. My friends can attest to my state that week–head-banging, bewildered William Schuester did something good by accident, obsessively relaying the ever-increasing hit-count as my words died out. I told one of them:

The irony in writing about what I write about is that you write about not-existing, and then you very suddenly exist.

I’m not so good at handling that.

But as I adjusted, as I pieced together the history of what happened and approved comments and somehow, strangely, kept existing, I started being able to read what people were saying. I started getting emails from parents who wanted me to know that they’d brought the piece into IEP meetings and had it written into the IEP that their child would be allowed to stim and move, from parents who’d talked to their child and asked if this had happened to them, told them to come and tell if it ever did, from teachers who’d thrown away their Quiet Hands posters.

I get a couple of these a week, now, and I’ve never been able to respond because I cry every time I read them.

*****

When I was a little girl, I wanted more than anything for someone to tell the loud, looming people to stop.

*****

(No one ever did.)

*****

There’s another class of responses I’ve gotten. Autistic people, writing in. Sometimes only a word, a word scraped out and bled through with meaning I understand and never will be able not to.

Yes.

*****

Thank you. 

In my school, it was “sit on your hands.”

You remind me I’m a person.

I feel a little less alone.

******

I see another little girl, flapping in the pharmacy.

Raising my arms comes a little easier, every time.

Written by Julia

December 13, 2011 at 3:57 pm

Posted in advocacy, personal

Autistics Speaking Day, 2011

with 14 comments

Today is Autistics Speaking Day. It’s an annual holiday of the Autistic community that started last year in response to some ill-advised advocacy attempts, and I hope it continues until someday every day is Autistics speaking day. It’s one day of the year where social media and the blogosphere are reserved for the Autistic community to speak out in a concentrated effort.

Today is Autistics Speaking Day.

Today I am silent.

Part of being autistic is that things do not always go according to plan. Part of being autistic is that I can’t always synch up with everyone else. Part of being autistic is that I can’t, in fact, deliver meaningful content and communication whenever I’d like–or, really, whenever other people want me to. Part of being autistic is that I can go months without anything much to say at all, really.

Part of being Autistic is knowing that that’s okay.

Most of my writing and thinking this past month has centered on the things I’m interested in–Glee, Phineas and Ferb, Community. Mostly Glee. I’ve been doing other stuff, sure, but much of the thinking is still pre-verbal. I have thoughts I can feel stitching themselves together and lining up about college and developmental disabilities, about quite hands, about the power and terror of words like “stop” and “I need help” and “no,” about abuse, about when autistic people are listened to, and about autistic vs Autistic….but they aren’t ready yet. They aren’t even words. Most of my posts here have taken months of patience, of silence, of frustration and catharsis and self-injury and all kinds of “behaviors” and meltdowns and unpleasantness, before I could sit down and everything came together. I’m in that transitional period again now, and it’s quite uncomfortable much of the time.

I’ll wait. I’ll be silent. I’m Autistic–I’m allowed.

Today is Autistics Speaking Day. Some of us can’t speak today.

I hope you’ll still listen, when we can.

Written by Julia

November 1, 2011 at 1:28 pm

“Congratulations on your human decency”

with 6 comments

The correct reaction to hearing about systematic injustices or oppression experienced by an autistic person is not to turn to the autistic person explaining this and exclaim: “but I would never!”

That this response is in any way considered a legitimate one will never cease to baffle me.

I’m thrilled that you aren’t revolted by the idea of an autistic person having sex. I am really, genuinely, honestly excited. You know why?

Because you are rare. You’re like a unicorn. If everyone felt like you, my friend would be permitted to be alone in another room with her boyfriend of seven years.

But…oh. She’s not.

She’s turning twenty one, and she’s never been told what “sex” is.

She’s also not an isolated example. She belongs to a specific group of people–autistic, intellectually disabled, in a supervised living situation–who are routinely and almost by default denied agency over her sexuality. Other groups experience the same abuse in different ways.

You think that’s wrong? Congratulations. Then I’m probably not writing about you.

I am honestly overjoyed when a parent or an educator tells me that they don’t practice quiet hands. I am also frustrated past the point of tears, because you are not enough. You are one person refraining from abuse in a culture where these practices are expected. Your actions have an impact, yes–they also do not negate the reality I and the autistic community have grown up in. A spot of light in the darkness is invaluable, but it’s just that–a small spot of light. I’m not writing about the spots–I am writing about the overwhelming, consuming darkness.

I really don’t understand how we’ve gotten to a point where some sort of acknowledgement is expected for the teachers, professionals, and parents, the service providers and the allies, who manage to show some basic human decency. Such a state of affairs is an insult to everyone involved.

If I describe a broader, troubling trend in society that has a profoundly negative impact on me and my community, a reply of “but surely I am not a part of this trend!” is nonsensical. It says absolutely nothing about anything I described. You aren’t a part of the problem? Then what I’ve said doesn’t apply to you. Why are you bringing yourself up? It’s as if you commented that the sky is particularly blue today, and I mentioned that in Australia it’s midnight. They’re both technically true statements, but mine really isn’t conducive to a discussion of the weather here and now.

In fact, if I make a habit of such statements, I’ll probably be seen as needing some speech therapy or behavioral intervention.

You will probably be seen as a very, very patient ally.

It’s an absurd situation. It’s like a straight parent wanting praise for not kicking out their LGBT+ child, a man expecting me to finish an essay about rape with a p.s. most men aren’t rapists, it’s like me as a white person expecting a Japanese friend to finish a recounting of racial violence with a quick oh but I know you’re not like that, Julia.

Guess what! I don’t get points for meeting the bare minimum requirement of ethical human behavior! No one does! It’s the minimum. It’s what the default is supposed to be. We should be able to take it for granted.

Yet in discussions about ableism and autism, I am repeatedly confronted by this problem. When I refuse to qualify my statements with but of course some parents would never kill their child, or not that life is always perfectly easy for neurotypicals either, I am told I am being too blunt, angry, or antagonistic. Probably, it is theorized, this is because I am autistic. I must have difficulty understanding that my experiences aren’t universal, or that other people have feelings and a right to different opinions.

No, actually. Speaking–well, typing–truth plainly and as concisely and directly as I can is not the same as harshness. It probably feels unpleasant when read by a person in a position of immense privilege. I am frankly more concerned with the systematic injustices I see all around me.

I mention privilege. Privilege is a word that has a lot of meaning. I’ve been told I’m privileged for being able to articulate what has been done to me.

I really cannot think of anyone luckier.

Privilege is actually very different from luck. Privilege is a lot like water, to paraphrase Amanda Baggs. It’s been described as “not having to know” or “being able to forget”–not having to know that nothing will change for you unless they leave a bruise where someone can see, being able to forget that someone was institutionalized. A useful description here, however, is simply “used to taking up space.” People in positions of privilege–and enabled people are by definition in a place of immense privilege over disabled people–are used to taking up a lot of space. This does not mean that they are bad. It does mean, though, that when a minority attempts to claim a little bit of space for themselves, the privileged people will feel attacked. They might feel that the minority is, by trying to exercise their own voices and claim their own space, calling the privileged group intrinsically bad.

But here’s the catch–if the minority group devotes their limited attention and energy on reassuring the privileged group and helping them manage and process the transition…then the privileged group is still taking up all of the space!

There is not actually a way for the minority group–and to be specific again, I am talking about disabled people, about autistic adults–to win here. Either we let ourselves be co-opted into soothing decent people that they are in fact decent people, or we are a hostile force to be at best ignored and at worst fought. Either way, the privileged group–non-autistic people–is still the center of the conversation and still makes the rules.

It is completely unacceptable.

So, for future reference? If someone positions themselves as an “ally” and expects some sort of acknowledgement or praise or thanks for it: I disengage. I could not be less interested in having conversations which adhere to this power dynamic. I’m busy: I have a liberation to craft.

I would love it if you could join me.

Written by Julia

October 7, 2011 at 3:31 am

memo re: self advocate bloggers

with 3 comments

Blogging: not actually an ADL!
Writing long-form: not actually the same as being able to have a conversation!
Writing things on your own schedule: not the same as employable!
Verbrose speech/writing: actually a symptom of ASD!
Autistic adults: once rumored to have been autistic children!
The people you’re undiagnosing: actually have issues with feeding, toileting, sleeping, self-injury, communication, and independent living!
Privilege: a word that means something!

Written by Julia

September 22, 2011 at 11:31 pm

Patronization

with one comment

I received the feedback forms from the presentation I gave in August. The responses were uniformly positive—I’m just not sure I can trust them. See, I was described by various respondents as “inspiring,” a “kid,” and “a very good role-model.” (But relatively “empowered” and “self-sufficient,” as opposed, one can assume, to the Real Autistic People.)

Can we talk?

First of all, let’s get this out of the way: I am not a kid. I am, indeed, rather young, and as embarrassed about that as I am, there is nothing wrong, really, with calling me a kid. I call myself a girl. But calling my co-presenter, who just earned her doctorate, a kid? Makes me suspicious. It makes me remember how in popular conception there are no autistic adults, only children, and the children never grow up (or even reach puberty.) It reminds of how I listened to a man giving a presentation about a “community” he was designing for “children with autism”—except every one of these “children” was over the age of 21. When asked, he explained that “I call them children because they will always be children to me.”

And when that is the dominant context for these discussions? Then no. You do not get to call me a kid.

Similarly, “inspiring.” I’m amused that the same qualities which make me a failure and a disappointment in one context make me inspiring in another. But it’s not funny at all. I write and present furiously about injustice, about violence, about the things they do to us. No one who actually hears what I say walks out of the room inspired. They walk out furious. This? Is not inspiring. It’s terrifying. I don’t write to move or to touch, I write to survive, and it’s only inspiring if you paint over all the pain fueling it and everything it’s about so that you can enjoy the utterly adorable sight of someone trying to advocate for themselves.

(At the conference, Zoe asked DJ how he dealt with hate-speech. He told her to be brave, because that’s all you can do in the moment. A woman sitting next to us was so touched that she teared-up and put a hand over her heart. Not appalled that we live in a world where people argue about whether or not it’s morally justifiable to kill us. No. Inspired by our adorable attempts at bravery.)

I’m not performing for you.

This is not about your reactions.

This is not supposed to be easy.

It’s not easy for us at all.

I’m not a good role model. I’m far too angry and unpredictable for that, and if I were to mentor anyone the first thing I would tell them would be  “figure out how you want to be.” There’s not a correct way to do this, there’s not one right way to be an adult autistic, there are no acceptable autistics, and it terrifies me and sickens me and makes me worry about what I did wrong to make someone think I could be any of those things.

Finally. I am utterly fascinated by the use of the descriptors empowered and self-sufficent. Those are great words, and I plan on adopting them. But saying I am those things, and other autistics aren’t or can’t be, tells me, if I had any doubts still, that you sat down for an hour and fifteen minutes and didn’t hear a word I had to say.

Written by Julia

September 4, 2011 at 3:11 pm

On Being Articulate

with 14 comments

They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)

I can request independently and answer yes-no questions reliably.

(I can request independently because I never make requests, which means independence, which means I must not have to but I could if I did, right? But if you ask me if I need help I will say no, and if you ask, as my hands fly around my ears and my shoulders go tight and small, if I’m okay, I will say yes because I can’t say no and if I could it would mean more talking and less space and I will say anything at all to get you to go away until my brain is my own again.)

I am verbose and prosaic in my speech.

(I am as helpless to stay silent when you speak to me as I am to move when I need to do laundry. I freeze, staring at my dirty clothes, and every cognitive break I own clamps down because I can’t, because there are too many steps, because this has been the Summer Of Laundry Wars and I have lost. But there are no steps at all in unhinging my jaw and going somewhere very far away and echoing, echoing, reciting and remixing scripts about Why I’m Not In School and What I Did This Summer and Why We Deserve Human Rights until the tape runs out.)

I have such a good grip on the English language.

(And such a poor grip on reality, going somewhere still and quiet and out of my head while my mouth turns tricks for you.)

I’m never told I’m impolite or out of place or off script.

(Bad, too serious, perseverative, disconnected, hateful, boring, too enthusiastic, dogmatic, of course. All of those. And that’s just for talking about a show I like, without even stepping on anyone’s toes. For being happy, for getting excited about something, for trying to share. For saying something that wasn’t an answer to a question. But everything’s fine, and I’m very polite, I’m very well trained.)

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

(I never disagree with you to your face, and you’ll probably never hear about it because the gore in my stomach when you tell me I must be very high-functioning gets pulled down by the fear of quiet hands and you must not understand and I know putting yourself in other people’s shoes is hard for you.)

I’m a Forgettable Autistic.

(As a child, I didn’t cry when I broke my wrist, which meant I didn’t feel pain. I read about social skills when I was bullied, so I wasn’t mistreated. I didn’t cry when I was abused, so it wasn’t abuse. Now, I tell you it’s fine and I walk away, and maybe I sat in a hallway for two hours the other week, unable to remember how to stand, but I can tell you I’m fine so I must be.)

I’m articulate.

(So you don’t have to listen.)

Written by Julia

August 31, 2011 at 6:40 pm

Dear “Autism Parents”,

with 99 comments

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

6.

“But my child!” you say. “My child can’t feed themselves! My child needs diapers! My child cannot be left unsupervised! My child is medically affected!”

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Stephen Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

On days like today?

It’s just a lifeline.

Written by Julia

August 23, 2011 at 1:57 pm