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These things are not luxuries

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Historically, Washington, DC has only provided home and community-based services (HCBS) to people with developmental disabilities who also have an intellectual disability. This year, DC is joining most of the rest of the country in expanding eligibility to include people with developmental disabilities, like autism, who don’t also have an intellectual disability but still need help with daily living. I was asked to testify at a forum today about why this is so important. Here is what I said:

Thank you so much for having me here today. My name is Julia Bascom, and I am a DC resident. I’m a white woman with brown hair and glasses. I am autistic and I have other disabilities as well. When I heard that DC was expanding eligibility for HCBS to people like me who don’t also have an intellectual disability, I was so excited. I want to tell you what this policy could mean for people like me.

Because of how my autism works, I cannot live on my own. I need help every day. But it is not safe for me to live with my family of origin. When I first left home, I tried to live on my own for a few months. Even with my friends trying to help me, it was a dangerous situation. I struggled to take a shower, eat, or go to work. I became very sick, and very weak. I thought I was going to die.

Thankfully, I had a friend who was willing to become my roommate and provide me with daily , live-in support. For the last nine years, my friend has provided me with substantial support, every day. Because I have that support, it means that most days, I eat enough meals and at least one vegetable, take my meds, take a shower if it’s a shower day, and go to bed before I collapse. If I need medical care, I get it. These things have not always been true for me, and they are never things I can take for granted. My roommate’s support keeps me alive, and makes it possible for me to work and to have a good life.

The person who supports me deserves to be paid for the work that they do. But because I don’t have an intellectual disability–“just” autism–I haven’t qualified for DC Medicaid. So there isn’t funding for my support. I have to rely on the kindness of friends, and my friend who provides the bulk of my support has to work a second full-time job. This is wrong. And it also means that, if my roommate has to work an evening shift at their paying job, I might not be able to eat dinner that night. That’s wrong, too.

Sometimes people are surprised to hear how much support I need. I can talk and use big words, and I have a fancy job. This is actually pretty normal for autism–we have research that shows that autistic people with high IQs still struggle with things like executive functioning and daily living skills. So for me, that means I can do lots of policy work, but I can’t follow the directions to give myself a COVID test. My roommate has to help me. Every autistic person is different, but most of us need some help with daily living. If we need help, we should be able to get it. And we shouldn’t have to rely on unpaid friends and family members to be able to do things like take a shower or go grocery shopping.

I don’t like to talk about all of the things I can’t do, or all of the things I need a lot of help with. But I want you to understand how important expanding eligibility for services is. So here are just some of the things I need support to do:

–I need support to remember to eat enough meals during the day, to figure out what I can eat, and then to actually get the food.
–I need someone else to cook most of my meals.
–I need prompting to take a shower or brush my teeth.
–I need someone to make sure I go to bed. I need someone to remind me to change into pajamas and take my meds at night.
–When I get really upset or overwhelmed, I need someone to help me keep from hitting my head.
–When I get hurt, I need help remembering to get ice or a heating pad or take ibuprofen. When I don’t have that help, I do things like walk half a mile on a broken ankle.
–I need someone to go to the doctor with me.
–I need help running almost any errand. I need someone else to do the grocery shopping, because it gets too overwhelming.
–I need help scheduling appointments and filling out paperwork.
–A lot of the time at night, and sometimes during the day, I freeze in place and have a hard time moving. I need someone to prompt me and coach me to get me moving again. Otherwise I can be stuck in the same place for hours, not doing anything.

And until this new policy, DC didn’t think I needed any help at all.

This is not a list of everything I need help with. These are just some examples. But I hope these examples help you understand that the services that would be made available under this policy aren’t luxuries or things that are just nice to have. They are necessary for survival. Without support, I can’t have a good life. If I go too long without support, I could die.

A lot of the time, when Medicaid provides support, it only provides support for physical help, and only for things like eating, bathing, and transferring. If you need support besides physical help, or if you need help with things like cooking or going grocery shopping but not with eating itself, you might not qualify for Medicaid. Or, you might only qualify if you have an intellectual disability. When I’ve applied for Medicaid in the past, I was told I didn’t qualify because I don’t need very much physical help and my IQ was too high. But that doesn’t make any sense. If I can’t go grocery shopping and I can’t cook, or if I won’t eat without reminders, it doesn’t really matter if I can lift a spoon to my lips by myself. There’s not going to be any food on that spoon without support. And it doesn’t really matter what you score on a test if you can’t actually feed yourself.

I’m glad to see DC recognizing that, and making it more possible for people like me to get help without needing a certain IQ score. How successful this change is will depend a lot on the details. How are people with disabilities going to be assessed? Who will count as needing enough support? I believe this policy will fail if, when it’s implemented, it still leaves people like me behind. The assessments and tools that DC uses must recognize all the different ways people might need support with daily living, and not get distracted by other things.

In the end, I know I might not benefit personally from this policy even if it is done well. Because of the support my roommate provides, I can work a full-time job, and that means I make too much for DC Medicaid. DC is one of the only places in the country without a Medicaid buy-in for workers with disabilities, and I hope we can come back and fix that soon.

But even though I don’t know if I will personally benefit right now, I do know that I am not unique. Like I said earlier, most autistic adults need some kind of help with daily living. Some of them need a lot more help than me, and some of them need a lot less. Some of them also have intellectual disabilities and might already be getting services. The rest of us have been waiting. All across the district, autistic people and people with similar developmental disabilities are wishing we had the support we need to move out of our parents homes, work, and live good lives like our friends. Thank you for making that possible.

Written by Julia

May 19, 2022 at 1:26 pm

Posted in advocacy

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 38 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 13 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 21 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 15 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 7 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 4 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 2 comments

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 15 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