Thursday, March 9, 2017

Take a Flyer Off a Wall: Six Hours in the Hole (excerpt)

The deciding factor in both my imprisonment and my release was whether someone perceived me as fully human. The worst part of the whole experience wasn’t being drugged. It wasn’t the initial arrest, it wasn’t the complacency of witnesses, and it wasn’t being restrained, secluded, or tortured. It was being dehumanized — like when I tried to memorize the names of my assailants for the malpractice lawsuit. I have the names of the police officers and the nurse who drugged me, but another nurse flipped his name badge to hide his own identity, and never showed up in the hospital record. I had shouted repeatedly “That man! What’s his name?” to which he responded “No, my name’s not Jackie Chan” and laughed. This was when I began to see firsthand the ways that all the violence against me would be retroactively justified. In that nurse’s perception, I was not human. I was part of another species called Them Buncha Crazies.

Read the full story published in Mad In America, an online magazine dedicated to exposing psychiatric malpractice.

https://www.madinamerica.com/2017/03/six-hours-in-the-hole

Wednesday, January 18, 2017

Dear Meryl Streep: No Abled Savior Needed

Meryl Streep has managed to make headlines by attacking the world's lowest-hanging fruit: Donald John Trump. Apparently it is viewed as an act of bravery to stand up to the most blatantly and visibly racist, ableist, misogynistic, xenophobic, homophobic, transphobic, and all around assholish public figure of modern times. It is especially brave to do so as a wealthy abled white cis woman, in the process of receiving a nationally televised award.

At the Golden Globes ceremony on January 8th, 2017, Meryl Streep received the Cecil B. DeMille Award, and used part of her acceptance speech to dredge up a year-old news item: Donald Trump publicly mocking the mannerisms associated with arthrogryposis, the visible disability of Pulitzer prize-winning journalist Serge F. Kovalevski. I call him that, not because I particularly value awards or titles (I didn't even watch the Golden Globes when it originally aired, and I'm an actor), but because Kovalevski doesn't appear to name himself a member of any disability rights movement, nor focus his journalism on disability topics. Thus a description of him as a "Pulitzer prize-winning journalist" seems to contain far more relevant information than "disabled reporter" does.

As I and many others pointed out over a year ago, referring to the mocking of a disabled person as some unspeakable evil, or as "the final straw" to sever support of Trump's campaign, is actually ableist. Mocking a disabled person qualifies as evil, certainly, but it is not more evil than creating a mandatory Muslim registry like the Nazis did with Jews. It is not more evil than grabbing women by the pussy without their consent. And it is clearly less evil than repealing the Affordable Care Act, effectively killing millions of mostly disabled people, not just making fun of us. Why weren't any of those things the final straw? Why is mocking disability met with greater outrage than actions that are objectively, measurably more harmful, to other minorities and specifically to disabled people? The answer to that question lies in the subtext, something all actors love, within Meryl Streep's rhetoric:
"It sank its hooks in my heart... It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter. Someone he outranked in privilege, power and the capacity to fight back. It kind of broke my heart when I saw it."
The underlying tone, neatly bookended here, is pity. Just as disabled people merely living our lives is inspiring and heartwarming, on the flip-side directly interacting with a disabled person in a mean way is a low blow, kicking someone while they're down. Of course in reality, being disabled doesn't mean we're "low" or "down" in the first place (unless you're literally talking about wheelchairs or dwarfism, neither of which describe Pulitzer prize-winning journalist Serge F. Kovalevski).

Making fun of disabled people is the unforgivable sin of the 21st century, not because ableism is bad - the speech didn't even contain the words ableism, discrimination, or bigotry - but because disabled people are already so tragic and vulnerable. Hiring people who aren't disabled to play us in movies is fine. Taking away our civil rights, that's fine. Literally murdering us, no problem. Just don't point and laugh. Meryl Streep says we lack "the capacity to fight back." While it's true that the president of the United States generally has more power than a given New York Times editor, first of all, Donald Trump hadn't yet been elected to any public office at the time, and second, Pulitzer prize-winning journalist Serge F. Kovalevski can and has responded to Trump in the way that he himself saw fit. There is no abled savior needed to defend him.

Potentially the most troublesome word choice in the speech is when Streep said that Trump "imitated a disabled reporter." Not mocked, imitated. What happened to the old adage "imitation is the sincerest form of flattery"? I seriously doubt that Pulitzer prize-winning journalist Serge F. Kovalevski felt flattered by Trump's childish antics. Meryl Streep, did you mean to imply that acting in the manner of a disabled person is what damned this action, not the fact that it was done for the sake of mockery? When an abled actor plays a disabled character, what's shameful isn't the stolen opportunity, but that a disabled character is portrayed at all? Maybe that's why you didn't even mention Kovalevski by name. He's just "a disabled reporter" to you, stripped of his personhood and of all his accomplishments. You also managed to mention the recently passed, openly bipolar Carrie Fisher, but as "Princess Leia" - neither disabled nor a person! You disrespected them just as much as you deservedly disrespected Trump. As you said in the very same speech, disrespect invites disrespect, so maybe I should call you "shit head" or something instead of Meryl Streep.

As I often say in presentations about autism, two people who are both ableist are always on the same page, even if they say and genuinely believe they're not. If you're a parent using Floortime to manipulate your child into acting neurotypical, you're not some radical revolutionary. You're not special for disagreeing with those in the ABA industry, 'cause actually, you agree with them. You agree that disabled people should not be allowed to be visibly disabled in our mannerisms, and your actions reflect that. If you're a doctor who says that vaccines don't cause autism, but if they did, you'd have to be "monstrous" to still administer them, then you don't disagree with anti-vaxxers. Not when they say being Autistic is worse than having polio. Hey Shit Head, do you think being disabled is inherently shameful? That being visible to the world, with uniquely disabled mannerisms, is shameful? If so, you and a guy who's basically famous for being an asshole are in total agreement.

Image description: Side-by-side photos of Donald Trump (left) and Meryl Streep (right). In comic book speech bubbles, Trump says "I hate disabled people!" and Streep replies "Me too!"


It may seem like I'm over-analyzing a single 1-minute paragraph within a 6-minute speech. That's because that 1-minute paragraph is all Meryl Streep said about disability. The rest of the speech, well, it was a calculated action from beginning to end: After bullying, she segued into asking her audience to support the Committee To Protect Journalists, and indeed there was a reported spike in donations right after the Golden Globes. That's great for journalists and probably needed, but was the fact that Kovalevski is a journalist really the centerpiece to this story? Where is the spike in donations to ADAPT, or Not Dead Yet, or the National Council on Independent Living? With regard to disability, all this Golden Globes speech managed to inspire in its viewers was warm fuzzy feelings. It glossed over everything notable that disabled people did in the last year, and instead used one person as a nameless prop to add egos to the list of things being stroked in a rich abled white people's circle-jerk.

What about the parts of the speech before Kovalevski and Trump?

Before reading any other perspectives, I watched Meryl Streep on YouTube so I could start with my own opinions. She began with what sounded like a speech about diversity. I may not be a comedian, but that should inspire laughter: An abled white woman, delivering a speech, to an audience that is 94% white and 0% visibly disabled, praising that audience for being so diverse. She gave shout-outs to specific actors, and to her credit named their countries of origin including Israel, Kenya, and Ethiopia. But that's only a third of the names she chose. I'm sorry, but four (4) U.S. states, Italy, and Canada does not qualify as "diversity". That's just six (6) white people. To imply that it does reflects denial and rationalization.

Streep made no mention of disability when applauding the diversity of Hollywood. It was as though she did not see the connection within her own speech. No Affordable Care Act. No underemployment of disabled actors. No disability rights advocacy groups. No criticism of ableist movies like Split, The Accountant, and Me Before You, which undermine the work of disability rights groups and fail to employ disabled actors, many of whom are alive thanks to the Affordable Care Act.  If there were any invisibly disabled actors in the audience, I don't think they were very impressed with the bravery of Meryl Streep to utterly fail at addressing any of the real issues. I, a disabled actor, am not impressed. I, a disabled actor of color, am not impressed.

Monday, January 9, 2017

Your Fave Is Problematic: End The Stigma Badges

Image description: Red square graphic with bold white text that says “The End The Stigma Badges page is ableist and supports stigma hashtag intersectionalism fail hashtag ableism hashtag fake allies”


This is a story of the fastest falling out I have ever experienced or been witness to. Even the Art of Autism was not this petty. This all started in January of 2017; as I write this call-out, the date is January 8th, 2017.

The campaign began as a Facebook page, the brainchild and New Year’s Resolution of one person, who sought to normalize mental illness, through a coming out process akin to that codified by the queer community. The concept was that mentally ill people will use the badges - simple images of bold text with a background color - to label themselves, in the eyes of their social networks, with a hashtagged message to “end the stigma”, and a second tag telling readers, who are also mentally ill but unable to come out, that they’re not alone.

The term “stigma” has a sullied history in disability activism. First of all, there are far more people writing and sharing books, articles, videos, and social media posts, which talk about there being a stigma around mental illness, than there are people doing anything about it. Even people who do at least claim to be combating stigma are mostly doing the opposite, i.e. perpetuating the very stigma they refer to. As it turns out, this “badge” campaign is NOT the exemplary shining beacon where someone finally does it right. It’s just another case study of disabled people being assholes to other disabled people.

The campaign picked up popularity very quickly: The Facebook page was “liked” thirty thousand (30,000) times within a week. As a result, the page’s founder decided to recruit a team of admins and moderators, to handle the immense wave of comments, messages, and new badge requests. Initially, I was one of those admins. I am no longer. These are my insights from that period.

Although my activist origins are within the Neurodiversity Movement, and this campaign is more aligned with Mad Pride* (though I hesitate to say so, potentially an insulting comparison for true Mad Pride activists), [*EDIT: Now that I've been informed that the recovery movement is considered a movement, I'd say this campaign is far closer to that rather than Mad Pride] irreconcilable disagreements are not the reason I left, or rather not the reason I was abruptly and rudely kicked out. In fact, I recognized the differences between movements immediately and was quite deft in towing the party line and finding compromises. For example, when a bipolar admin insisted that bipolarity IS in fact an illness and should be referred to as “bipolar disorder”, I, a non-bipolar person, yielded to standpoint theory and dropped the argument immediately.

If the founder and/or other admins choose to respond to this call-out, they will surely claim that I was being “argumentative”, hostile, insulting other team members, and that I acted like a rogue agent, intentionally defying clear agreements made among the team. Anything to deny, rather than confront, their own prejudices. It is no different from a business deciding that their disabled employee is too much trouble, but then claiming the person was fired due to “excessive lateness” or something similarly generic to avoid lawsuits.

The real reason they kicked me out was in reaction to a certain message found in my Facebook profile picture, conveyed using international sign language: That message is colloquially known as “flipping the bird” and customarily interpreted into English as “fuck you.” We talked about the picture within the team’s secret Facebook group, where I made it clear that it was not directed at anyone in the group. I even agreed to change it, as soon as I had a campaign-related picture to replace it. Still, the team was not satisfied, because their prejudicial feelings had already fermented, pegging me as an enemy in their minds.

That is the gist of the falling out story, but not a complete summary of why this campaign is problematic. The rest I feel is best suited for a top ten (10) list:
  1. The admin team has an irrational prejudice (or another way you could say that is a STIGMA) against words like “fucking” and signs like the middle finger handshape. They refuse to post badges that contain words on their personal “swear word” lists (without even offering any copies of those lists, of course), thus preventing “mentally ill” people from talking about “mental illness” in their own preferred language. They specifically deleted a fan-requested badge that said “I am a fucking survivor.”
  2. They made an album of “Neurodiversity Badges”, allegedly recognizing the perspective of neurodiversity activists who don’t necessarily accept the concept of mental illness, yet this album includes, said in these exact ways: “Nonverbal Learning Disorder”, “Oppositional Defiance Disorder”, PDDNOS (both as an initialism and spelled out), “I have autism”, “I am a person with autism”, and “I have ASD” (in fairness there is at least a separate “I am Autistic” badge). The album also briefly included “I have bipolar disorder” (not “I am bipolar”) before it was deleted.
  3. Within the admin team, there are no explicitly written rules, guidelines, or boundaries, only loose tentative agreements made in a fast-paced Facebook chat in multiple timezones. Despite this, lower-level team members (founder at the top, then “core” admins, then admins, then moderators) are held accountable for breaking these unwritten rules.
  4. They explicitly decided NOT to include LGBTQ-related badges, because in context those badges could wind up supporting, rather than combating, the stigma against queer identities, since a big part of that stigma is comparing queerness to illness. That makes sense on its own, but they apparently DON’T mind making badges for things like autism and ADD, where the exact same danger exists. They even explicitly reference autism and ADD as part of the neurodiversity movement (whose core founding principle is that neurodivergent people should NOT be labeled as mentally ill) but include them in a “mental health” campaign anyway.
  5. They made a set of “Badges for Men”, but then kicked out their only transgender team member.
  6. They attacked me on the grounds that I was “taking too much credit” based on a post which acknowledges me as a team member, written by another person who is not me.
  7. Speaking of the neurodiversity perspective, “end the stigma around mental illness” is a self-contradictory statement. Calling neurodivergent people “mentally ill” is inherently stigmatizing. So this campaign was already flawed in its premise. This problem was actually brought to my attention by other people, I thought it was a valid concern and brought it to the admin group. Nothing was done, because they can’t take criticism.
  8. Their ultimatum offered for not kicking me out was that they needed me “to monitor comments and bring any concerns to us. NOTHING MORE”. In other words, my opinions are not valued, nor even permitted. After I was doing a perfectly fine job of not just monitoring comments but also responding to them appropriately.
  9. They use weasel words (not blatant lies, but essentially lies) when interacting with public comments. For example, they said in the team chat that there won’t be any abortion or miscarriage badges because the conversation would be too difficult to moderate, but to the person who first suggested one, the public response is just “we will discuss it.”
  10. Once again, they gaslight and bully their thankless unpaid team members when one of them expresses a disagreement.
In conclusion, I first would like to allow a reminder, that problematic does not mean there are no positives to be found. Some of the badges are accomplishing legitimate anti-stigma work. The Facebook page also features lists of crisis hotlines - attracting people to those is a good thing. But for every anti-stigma action from the team running the campaign, they have also taken an equally pro-stigma action (insert your Newton’s law of motion joke here). Taken as a whole, this campaign is NOT a welcome addition to disability activism. If there are any attempts to monetize the campaign, I will be the first to declare that I boycott them, and will encourage you to do the same.

Thursday, December 29, 2016

Everything Wrong With Vaxxed (Autism Sins)

Andy Wakefield is at it again! Stop to get your popcorn ready and answer all your texts, 'cause this video will make sure you really know EVERYTHING wrong with this movie.


The same guy who committed fraud in 1998, by saying that the MMR vaccine causes autism, in an attempt to sell his individual measles vaccine for profit, has now made a movie to say that the MMR vaccine causes autism, in an attempt to sell his individual measles vaccine for profit, while accusing everybody else of doing the things he's doing. Actual diseases and anti-autism eugenics are back in full swing in this silly conspiracy movie!

Autism Sins is a snarky, sometimes satirical series, where I review media portrayals of autism in a rip off- er, I mean, an homage to the format of CinemaSins.

For T-shirts, coffee mugs, and other junk that leaves me a neat little artist margin, visit my RedBubble store.

To see more of my videos, visit my YouTube channel.

For the original Sinners, visit youtube.com/user/CinemaSins or cinemasins.com

Thursday, September 15, 2016

Autism Sins: Adam from House





Everything Wrong With House M.D. season 3, episode 4 "Lines in the Sand" and its portrayal of Autistic patient Adam Kelvey.




This is the first installment of Autism Sins, where I snarkily review media portrayals of autism in a rip off- er, I mean, an homage to the format of CinemaSins.




To see more of my videos, visit my YouTube channel.




For the original Sinners, visit youtube.com/user/CinemaSins or cinemasins.com

Friday, April 22, 2016

Acceptance Must Not Become a Buzzword

The discourse surrounding autism is full of meaningless buzzwords: Awareness, cure, treatment, high-functioning, optimal outcome, and many more; even the factual-sounding phrase "evidence-based" cannot be taken as an indication that there really is evidence. Many of these words did mean something once upon a time, but since then have been distorted by widespread overuse and misuse.

Language has power, and replacing meaningless buzzwords with things that are meaningful is an important part of pro-Autistic activism: Rather than appealing to a vaguely defined "functioning" level, we describe what people's specific support needs are. Rather than trying to nonsensically "treat" or "cure" something that isn't a disease, we attempt to change the social and civil environments to ones that are more accommodating.

You might expect that a campaign to promote "awareness" of autism would be educating people about what autism is, highlighting some Autistic role models, and explaining how to best support the Autistic people in your life. In practice, "autism awareness" campaigns don't seem to promote any message other than autism is a thing that exists. If that's all we're meant to be aware of, then frankly, I think we're at peak awareness. When I hear people talk about "raising" awareness further, I imagine some Amish family in the mountains, living off a tofu farm, that hasn't heard the word autism yet.

Awareness, at least autism awareness, is a meaningless buzzword. You can verify this by asking people at "autism awareness" events, "what does awareness mean?" and getting the word awareness thrown back at you in most of the answers. It's a signifier with nothing signified. Therefore, the only meaning it holds is by association with the people currently using it, and for the most part, those associations aren't pretty. When the main beneficiaries of "autism awareness" are also the people encouraging us to buy blue light bulbs and commit child abuse, "awareness" becomes a top priority to replace.

The Autistic community's answer? Acceptance. That word is loaded with meaning, and every year we make concerted efforts to pack it with more: Acceptance is an action. Acceptance is more than just passive tolerance of Autistic people's existence. Acceptance is implementing accommodations before they're needed. Acceptance is presuming competence. Acceptance is solidarity. Autism acceptance is a fundamental shift in mindset that embraces the neurodiversity paradigm and the social model of disability.

Thanks to the aggressive promotion of acceptance within the Autistic community, we're starting to see the idea of replacing awareness with acceptance take hold in things created by non-Autistic organizers. Some people chase the imaginary neutral position by including both words, while others see what the world is trending towards, and hop on board with acceptance.

However, bringing a word out of the fringe and into the mainstream has an unfortunate side effect: The fringe no longer has control over the word's meaning. The word is subject to the large-scale social mechanisms behind language development. The word's meaning is now derived from consensus rather than logic or purpose.

Just as awareness can shift from education and understanding to "beware the autism boogeyman", the meaning of acceptance can shift to harmful ideas like "accept the tragedy of autistic life" or "accept the real child hidden behind the autism." If that happens, then acceptance is no different from awareness. It's stolen from the activist toolbox and becomes one of the master's tools. Our years of work become a failed experiment and we're forced to start over.

Already there are organizations co-opting the acceptance label to dupe their Autistic audiences into not making a fuss, when the content is still the same message that we protest. There are well-intentioned "acceptance" events where the people who show up use the word acceptance because it's there, but are really still stuck in the awareness mindset, undermining the events.

It is not enough to correct these occurrences for misusing a word, for they may be ignorant of the intended meaning of one label, but their overall messages are quite intentional, as they have always been. It is necessary for us to condemn phony acceptance as fraud, and as hatred.

We must not let acceptance become a buzzword. If it does, then we have made no progress towards actually autistic people being actually accepted.

Monday, April 11, 2016

Not All Labels Are Created Equal

I wrote this article as part of the A-Z neurodiversity series created by Un-boxed Brain for Autism Acceptance Month. It is listed in that series as "L is for Labels"

The following article contains 238 labels.


The moment you tell me that you "don't like labels" is the moment I know you're being dishonest. If you speak any oral, written, or signed language, you use labels constantly: Child, adult, doctor, musician, gamer, optimist, pet owner, car enthusiast – These are all labels.

If you honestly tried to remove every label from your own speaking patterns, you would immediately run into the problem of infinite regression, as most label words can only be defined with other label words. Rather than "pet owner" you would try to say a person who lives with an animal in the same house, but then realize that person, animal, and house are all labels, and arguably so is the phrase "lives with" as a synonym of roommate.

We use labels for their utility, and out of practical necessity. Without labels, the only nouns in any language would be this, that, and pronouns. We would have zero ability to discuss concepts. You don't say "I don't like labels" when somebody calls you by your name, or occupation, or hobbies. The real meat of the conversation is those labels that are less mundane - more radical - not yet accepted as mainstream.

By "I don't like labels" you really mean "I don't like the label you just used." After fixing the language, the complaint is more relatable. We all have words we don't like; racist or ableist slurs for example. We might not all be on the same page about the details, but I think we can agree that some labels are neutral, like names or ages, some are bad, like slurs, and some are good. Let's start with the bad:

Ableist slurs hinder our ability to communicate.


Dumb, stupid, moronic, idiotic, and- if those first 4 words didn't shock you then this shouldn't either- retarded, are used as slurs against disabled people to insult us directly, and that's obviously harmful. They are also used against non-disabled people, to insult them by comparison to disabled people, which is of course offensive to all disabled people. Yet neither of those applications are what make these words less-than-useless as labels.

Ableist slurs based on "intelligence" end your thought process. If you don't like something, just call it "stupid" and swish your hands together like you're shaking off crumbs. Why don't you like that "stupid" thing? Well, because it’s stupid! The same can be done with "sanity" slurs and with the word lame.

In this scenario, we're not even talking about a person. We're talking about an object (or an emergent property of an object, like a story or a computer program) that has no brain and is thus incapable of having any brain-related characteristic. The word "stupid" thus has nothing to do with a brain; it's just an empty metaphor where you can file away everything in the broad category of "I don't like it." Since intelligence is a vaguely defined social construct invented to justify ableism, this is all equally true when we ARE talking about a person.

The basic utility of a label is to shorten a longer phrase: Rather than carrying around "small battery-powered computers that transmit digitized sound waves across great distances and reinterpret them on the other side", we carry cellphones. Human communication would be incredibly slow and cumbersome without labels to signify larger phrases. The problem with a label like "stupid" is that it fails to represent any phrase other than "I don't like it." Lazy critics may think they are signifying something important by referencing intelligence, when really it signifies nothing. If you get too used to calling things stupid, you learn to rely on it, but take the word away, and you are forced to describe the details of your actual complaints. If you don't care about removing ableist slurs from your vocabulary because they're ableist, remove them because you will become a better communicator without them.

Functioning labels divide our community.


High-functioning, low-functioning, mild, severe, and the nonsensical non-clarification of "Asperger's, not autism" are similar to "intelligence" slurs in the sense that they don't really signify anything. There is no set of characteristics that constitutes any measurable "functioning" or "severity" level.

Language has a tremendous influence on how we think, but that influence does not necessarily require using the language to communicate clearly. In some cases ambiguity may even be where the real power lies. Even if a label has no meaning behind it, the fact that people think it has meaning gives it power.

Functioning labels create categories out of thin air, simply by naming them, without even defining them. The connotations of "high" and "low" create a hierarchy: One label paints a target for prejudice, the other grants a shot at being accepted into the real privilege of the neurotypical label, at the cost of not having any support in doing so.

Meaningless buzzwords unite us toward inaction.


Labels without meaning aren't a new concept. If you're familiar with advertising, then you've surely encountered words like deluxe, gourmet, premium, and world-class. In the realm of advertising, these labels are known as buzzwords. If you've had the unfortunate experience of "autism awareness" groups, then of course you know that "awareness" is a buzzword too.

Awareness would ideally mean what it sounds like, a knowledge and understanding of the subject. In practice "awareness" campaigns, especially the ones about autism, have perverted the label such that it now signifies nothing more than seeing the word more frequently.

The label of "awareness" is a blank slate. It can encompass a variety of endeavors, from messages resembling those of neurodiversity to abusive practices derived from misinformation. Anyone can latch on with their own idea of what they feel "awareness" should mean. The label doesn't inherently mean anything, and yet we see communities come together on the basis of the label, just because a label exists. "Awareness" has the power to unite people, in the joint mission of doing nothing in particular, but doing it together.

Privileged people reject their own labels.


Neurotypical people (along with several other categories including white, straight, and cis) often reject the label of neurotypical. As is true for my pronouncements about slurs and functioning labels, when someone tells you not to use the word neurotypical, that's because they don't want you recognizing neurotypical as a concept.

When asked for an alternative, neurotypicals may offer the word "normal" or something similar, but that perfectly illustrates the problem with not having a label for neurotypical. Normalcy is a tool of oppression. Calling one set of people "normal" presents that set as the only good and healthy way to be, which in turn instantly paints everyone else as weird, alien, bad, and unhealthy.

The other alternative is to avoid labels altogether. Why do we need those words at all? Can't we all be human beings? Why can't we just call everybody people?

We can't just call everybody people.


If you constantly avoid labels, instead referring to everyone as people, then any time you give in and take the easy route, you'll be contrasting a label against "person" thus implying that whoever you're talking about isn't a person.

You can't just do away with human traits by not talking about them. Because there is no universal set of human experiences, desires, or needs, the differences between us matter. In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where "I don't want to" is not a sufficient excuse, I need the autism label to justify my self-protection.

It would be great if labels like autism weren't necessary. It would be great if ableism didn't exist, but that's one hell of a hypothetical. Ableism is an extreme and far-reaching problem that can't be solved without labeling the specific disabilities of the people being harmed.

Identity labels create communities.


Those who think it wrong to label ourselves autistic are operating under false notion that there is something wrong with being autistic. The autism label may be used to create stigma against us, but it also gives us something to reclaim. Before the label, we only had terms like weird, or abnormal, or worse. With the label we have something to point to for positive identity and pride.

Before the autism label existed, autistic people were disconnected, isolated individuals. We needed the label before we could begin to congregate on the basis of being literally like-minded. We need the label in order to search for resources from people with the same experiences. The autism label enables Autistic community. Uniting ourselves categorically unites us as people.

Bringing autistic people together also led to the creation of other terms, like stimming and special interests, which capture the beauty of autism and Autistic culture. These terms were created out of necessity and out of appreciation for our shared community.

...and it's all thanks to a label.

Image: Me in front of a book shelf, holding a sign which says "I am... A multiply disabled feminist socialist transgender atheist jew ...and I am Autistic. #AcceptAllOfUs"
Along with the labels themselves, the fact that I crammed together the most controversial labels also conveys additional personality information.

Sunday, November 1, 2015

Family: A Love Letter to Autistic Space

Earlier this year, I had the opportunity to attend Autism Campus Inclusion, an annual, week-long summer leadership workshop created by the Autistic Self Advocacy Network. The main purpose of the event is to teach organizational, leadership and advocacy skills. However, both the participants and ASAN executives recognize that some of the most valuable learning experiences occur outside the workshop time, in casual conversation among the participants. On the first day, Ari introduced the workshop by stating that "this is Autistic Space. Therefore, you are allowed to be Autistic. You can rock, flap your hands, get up and pace, or leave the room at any time."

I've been in physical gatherings of only autistic people before, but I don't think many of them were ready to recognize Autistic culture as a concept, let alone critically analyze its meaning. In a casual two-hour discussion group at a coffee shop, there isn't much time dedicated to having a facilitator explain cultural values. A gathering of autistic people is not automatically Autistic Space. There is a whole spectrum (!) from "100s" like me, actively working on behaving more autistically, to those who consider acting neurotypical to be a desirable practice.

The essential elements of Autistic Space are naming it, explaining it, excluding the opposition, and giving it time to grow organically. At Autism Campus Inclusion, it turns out that a week is plenty of time. 17 Autistic people gathered in a dorm to proudly obsess over their favorite topics. 17 variably verbal Autistic people cooperatively enforced the "raise your hand" system, recognizing it as a practical necessity not limited to children or classrooms. 17 victims of ableism got a chance to freely vent about the ignorant shit assholes spew, not having to carefully explain why it's bad or argue against opposing politics. 17 transgender Autistic people (okay, maybe a few of us were cis) talked about gender identity in ways that both cis autistics and trans neurotypicals can only respond to with "yup, that sure does sound weird and complicated!" 1 Autistic person flapped their hands. The other 16 followed like dominoes.

One of the less organic elements of the event was the Color Communication Badge system, a recognition that social access is just as important as the physical (ramps, elevators), sensory (quiet, darkness), and emotional (respectful language, trigger warnings). For the uninitiated reader, the Color Communication Badges are a set of three cards, with a single "active" card showing in the front, interchangeable at any time.
  • Green means "I'm open to social interaction. Please approach if you are too."
  • Red means "I need to be alone. Don't approach me unless it's an emergency or I've told you ahead of time that you're on my red list as a support person."
  • Yellow means "I want to be social, but only with people I already know."
At ACI, some confusion arose specifically around the meaning of the yellow badge. I stated, and several others agreed with the sentiment, that I already consider us friends. Therefore there was little difference between green and yellow. I decided to repurpose the yellow badge as the generic, often-yellow symbol for "proceed with caution" and in practice, this was how it worked in general.

As I explained in the closing remarks, this was a misrepresentation of my own perspective, because I was afraid to say how I really feel: Other autistic people are not my friends, they are family. Before I go on with my own interpretation, I ask you, reader, to take a moment to think about this distinction. Words mean things, no matter what your dictionary says. There's a difference in feeling when you think about friends versus family. If you're Autistic, you might already know exactly what I mean. If not, it's at least a clue.

Friends are those we choose to maintain connections with. Family is who we're born with. One of the many blessings of autism is that we have a birthright to join the Autistic community. Just as queer or Deaf children may feel more connected to their communities than their bio-families, Autistic people thrive in the company of other Autistic people. Neurotypical parents are at best a supplemental aid, usually outright detrimental.

Even though I am privileged with access to a car, most people are surprised to find out that I regularly travel upwards of 30 miles, or about 3 hours of driving time, to get to those 2-hour coffee shop groups. Previously having acted intuitively, after ACI I've realized on a more conscious level the motivation I have to spend more time in the Autistic community. When asked where I'm going, my scripted answer is "I am visiting my family."

But where exactly is this "Autistic community", initialized with a capital A to signify cultural relevance? After all, I just said that the coffee shop groups, the majority of physical gatherings at least where I live, don't generally recognize autism as a culture (although I'd argue that a culture can develop even if the developers don't realize it). A community by definition is an interpersonal hub of culture. Putting a bunch of Autistic people in the same room, with no cultural significance, is just a gathering, not a community.

Before I gave in to worldwide peer pressure and created a Facebook account, I had already heard about some of the popular quirks, including "pokes" and "likes" as well as the way people use it. I decided early on that I would avoid a particular stereotype of internet users by never "friending" anybody I hadn't met, but otherwise take a pretty relaxed attitude: "If I've met you at least once, we can call each other friends online." Within the past year, I've adopted a second rule: If you are Autistic, you are my friend.

I realized that I wanted more Autistic internet friends because I thought about how I came to understand that autism is a culture. A local social group recommended a popular blog as an information resource, which in-turn led me down a rabbit hole that has no bottom to be found. I now consider myself a collector of blogs. I started my own blog because of the cultural role they play. I follow so many #ActuallyAutistic people on Twitter and Tumblr that my feeds rarely show anything directly from someone who is not Autistic. I joined all the Facebook groups I could find, stumbling through bans from several bigot parents along the way. One such group serves as a place for support, venting, complex discourse, political action, and fun musings, all in a swirl of differing communication styles and emotional circumstances. Such a beautiful tapestry did not paint itself by chance; it was deliberately engineered to be a safe space lacking the presence of even a single non-Autistic person. By connecting online, we defeat the obstacle of geographic separation. The internet is doing for Autistic culture what sign language does for Deaf culture: It gives us a standard means of communicating, to share ideas and values. I "meet" other Autistic people online in the same way that people "speak" sign language. That is to say the scare quotes are not necessary.

Still, as much as I love the internet, and recognize it as equally legitimate and valuable as other parts of the real world, there are some things beyond its capabilities. We do not have spontaneous conversations resulting from random circumstance. We do not stim together, or take photos together, or put a hundred people in the same room.

For Autistic Space to appear offline, we must defeat geography in different ways: One is travel of course, but in a capitalist world, this can only happen on special occasions: Workshops, conferences, retreats. The more important mechanism is growing our numbers: We must impart the knowledge and values of Autistic culture upon those who are currently disconnected. The 1-2% statistic is significantly higher than the comparatively more prideful Deaf community, which has to overcome similar obstacles of isolation and ableism. Those of us who are activists must keep seeking out those who are part of our family but outside of our community. Eventually we will reach critical mass and the sociological system will become self-perpetuating.

There are many members of our community who are suffering from internalized ableism, some of whom generalize their self-hatred and lash out at other autistic people. This I know, and I have yet to express how it saddens me. They too are family. However that does not mean we must accept their actions. Bio-families have toxic members too, and I wholly endorse removing them from our lives. The difference is that by cultivating a beautiful and vibrant community, we may grant them a desire to return, strong enough to change their ways.

Every autistic person has the right to experience Autistic Space. Recognizing that through action is my hope for the future of my culture, my community, my family.

Wednesday, September 30, 2015

Limiting the Conversation: Gentle Methods for Immoral Goals


"Other people talk about us without us, and set the terms of the conversation, and the stories it is permissible to tell."
– Julia Bascom, on narrative disempowerment

This year I started working at a preschool, which encourages everyone to take child development classes even if they aren't a teacher. When I found out my college has an autism class in the child development section, it was a natural choice. Of course, it was also a dangerous choice.

One of the class periods (not all of them, thank goodness) was devoted to parent perspectives. First a video documentary, then a live speaker.

The documentary showed two parents getting "the news" and then the inevitable barrage of alarmist pseudoscience from doctors. They had the typical reaction that "if everyone's saying it, it must be true" and started ABA. A few months later, they discovered Floortime and it quickly resonated with them as a common-sense approach. They saw their son start to improve with Floortime, for whatever their definition of "improvement" was (the narration didn't make it clear what their criteria were), while being obviously unhappy during ABA, so eventually they dropped ABA completely. Although they questioned and refined their methods, they never stopped to consider whether therapy was actually necessary. In the video, I saw no evidence of aggression or self-injury. Maybe some AAC would be useful, but that's not what either ABA or Floortime are about. It was simply assumed that once you find out your child is autistic, trying to stamp out the autism is just what you do.

The documentary showed a balanced perspective. The parents' attitudes were problematic, but honest. They had some "woe is me" moments about stress, but never explicitly said they wanted a neurotypical child. I wondered what the alternate perspective would be: Maybe this other parent's kid is completely nonverbal, or by contrast, hyperlexic? Maybe they're much older and had to navigate public school before a lot of services existed? Maybe they didn't get the autism label until their kid was already an adult? Remember that this was a child development class, so for once it really isn't about adults. Even among parents only, there are many different perspectives, each of which offer valuable insight. My teacher chose one that doesn't.

It's a vaccination photo showing people's faces, not looking particularly distraught, and featuring no dehumanizing gloves or surgical masks. Eat my shorts.
In an act of reckless and rapid-fire disrespect, not only to autism but also to science and academia, an anti-vaxxer began rambling about subjective truth. It was the equivalent of inviting someone to a political science class to say that 9/11 was a conspiracy and Obama is a Muslim from Kenya, or inviting someone to a biology class to say that germs don't exist and diseases are really caused by demons.

At first I thought the speaker would be a little closer to moderate, at least compared to other anti-vaxxers, solely based on the fact that they used the word neurotypical, which even the teacher relegated to air-quotes; I was wrong. When I posed this mystery to colleagues in an online support group, it all made sense in one sentence: "Anti-vaxxers can use any word as long as they do not understand its meaning." (credit to Cornelis Holtkamp for that quote) The guest in my class asserted that their son was neurotypical, then gained autism along with OCD, irritable bowel syndrome, and Lyme disease, all from a couple of vaccines. Fortunately they were able to book a consultation with the private physician of Playboy model Jenny McCarthy (yes, they specifically mentioned McCarthy), who advised them to remove dairy and gluten from their son's diet. Poof! Everything went away. He was neurotypical again. So not only did a change of diet cure autism, an outcome that doesn't even make sense on a conceptual level, and OCD, which similarly makes no sense, but it also cured IBS and Lyme disease. I wonder then why this parent hasn't won the million dollar prize from the James Randi foundation for proving the supernatural.

My head feels heavy after my ears were filled with even trace amounts of your bullshit.
Of potentially greater concern than giving an anti-vaxxer a platform and legitimacy is the way in which they were presented. The anti-vaxxer is an obvious extremist; that much was not disputed. An opposite extreme would be an autistic adult with the opinion that autistics are superior to neurotypicals, or more likely just the non-problematic opinion that autism and mental illness are two different things. Actually the latter isn't even extreme, just radical. No such perspective was included, because of course it wasn't; Autistic people aren't supposed to have opinions about autism. The only other perspective was the Floortime family from the documentary.

The teacher had previously explained that ABA and Floortime come from opposing schools of thought, but there was really nothing opposing between these two families. The Floortimers didn't hate science or believe in magic, but they did want their autistic child to act as neurotypically as possible. Gently pursuing an immoral goal is still immoral. A parent who wants to "cure" their autistic child, but chooses Floortime rather than ABA, is not a progressive extremist at odds with anti-vaxxers. They're a moderate, leaning towards agreeing with the anti-vaxxers.

What happens when a moderate and an extremist are presented as the only two sides of an issue? First, the median between the moderate and the extreme is misperceived as being the moderate and therefore most reasonable position. This phenomenon is well documented in sales: Starting with an unreasonable offer makes it easier to haggle for a better deal; beginning with a reasonable offer gives away ground too soon, leading to a deal that is worse for the reasonable party. For example, if I'm trying to sell you a car, you say it's a worthless piece of crap and I say it's worth millions of dollars, we might reach a reasonable price if we keep negotiating. If you start by offering $10,000, a reasonable price for a car that is new but not an ultra-fancy brand, I can probably haggle you up to paying more than it's really worth. The median between the Autistic community and the anti-vaccination movement might be misguided use of Floortime, while the median between Floortime and anti-vaccination could be that we'll strive for a "cure" while respecting science, and therefore do whatever the American Psychiatric Association says is best, in other words dog training.

Second, whatever is contrasted against an extreme is misperceived as being an equal and opposite extreme. This in-turn leads to a few premature and erroneous conclusions:
  1. The two positions are equally valid. If Floortime is an opposite extreme from anti-vaccination, then Floortime must be just as ridiculous as anti-vaccination, making ABA seem reasonable by comparison; or if Floortime is sound, then anti-vaccination must be equally sound.
  2. The two positions are as far from each other as you can go. If Floortime is already the extreme, then there is no other ideology that is further away from anti-vaccination. Therefore, we don't have to seek out or consider one.
  3. Any position that falls outside of this spectrum (heh) must be a fringe movement that is totally outside the bounds of reason. If Floortime is extreme, then the neurodiversity movement must be even more extreme than extreme. This makes it easier to dismiss the neurodiversity movement and any other ideology that falls outside the artificial restrictions imposed on the conversation about autism.
To achieve the next level, one must first realize that the next level exists.
This is one of the many tactics which the cure industry (ABA association, Autism Speaks, etc.) uses to silence Autistic people's input about autism. It's inevitable that a group of people with a different kind of brain are going to approach issues in a different way and therefore come up with different conclusions. It's inevitable that autistic children, even under the influence of neurotypical parents, are going to develop disagreements about autism, just as gay or transgender children often disagree with their cishet parents. Without acknowledging the obvious causal relationship, the cure industry takes advantage of Autistic people being outliers as a means to discredit us.

The same thing happens to other minority groups. "Fringe" as a description of a social movement just means that not a lot of people support it. Thinking of the term "fringe movement" as inherently pejorative is basically the definition of argument from popularity. Of course minority groups aren't going to hold the most popular opinions; by definition we don't have a lot of membership. The one exception might be women, an oppressed group who are actually the majority. What misogynists then do is rather than framing the issue as "women say X" it's "feminists say X". Not everyone explicitly identifies as a feminist, therefore any woman who talks about women's issues can be relegated to minority status by being "a feminist" rather than "a woman". Such an extreme emphasis on the application of labels demonstrates the power granted by mainstream status, and the relative lack of power held by the fringe. The #YesAllWomen conversation is in part a rebuttal to this tactic, as is the name of the organization Feminist Majority Foundation. How this relates to autism is that the cure industry loves to talk about neurodiversity (if they talk about it at all) strictly as a fringe movement. If we start with neurodiversity, the biological fact, rather than the neurodiversity movement, then we have to acknowledge that 100% of all humans are part of neurodiversity.

In the case of autism, arguments from popularity also tie in with other silencing tactics, for example "your opinion is extreme because your inferior autistic brain prevents you from thinking rationally." Another argument from popularity is the reverse, that our unpopular opinions are evidence of inferior thinking. The use of functioning labels, to say you're either not autistic enough to understand autism or too autistic to have opinions, implies that the "high-functioning" category is a minority within the autistic population (even though most definitions of "high-functioning" such as "speaks using mouth" would in fact make us the majority.) These are just a few examples.

Let's recap the process of silencing the opposition:
  1. Adopt a popular position.
  2. Conflate popularity with legitimacy.
  3. If the opposition is already speaking up, pathologize them as lacking rationality or intelligence.
  4. Present only an extreme exaggeration of your position and a watered-down version of your position that still ultimately agrees with you.
  5. Play up the differences between the extreme version and the watered-down version so that they seem like they're in conflict.
  6. Assume the apparently reasonable, moderate position between the two extremes you have constructed.
How do you get rid of Autistic voices without individually addressing every complaint? Limit the conversation to include only the neurotypical range of opinions.

Thursday, April 30, 2015

Awareness Has Done Its Damage

Happy birthday, blog. This article was originally posted on the Autism Acceptance Month website, with appropriate trigger warnings for child abuse and murder. I also submitted it for the second edition of No Missing Pieces. The first paragraph is slightly tweaked because of the different contexts. What follows matches the No Missing Pieces version.

Every year, the Autistic community gathers to celebrate Autism Acceptance Month, while recognizing that we are describing the celebration by an unpopular name: Acceptance, not awareness. We understand this because awareness is not only history, but the present that we hope to change.

Awareness on its own is not a bad word. It's important to know about issues that affect the society around you, especially when you're among the affected. Knowledge is generally preferable to ignorance. Knowledge is also a component of acceptance.

The problem in the world of autism is that the popular model of an awareness campaign originates, and perpetuates, within a medical perception of autism. The parent and professional community has taken note of popular campaigns regarding breast cancer, HIV, smoking-related conditions and so forth, and simply copied those strategies, under the assumption that autism is correctly classified as a disease or disorder.

This sort of campaign typically focuses on the protections that prevent spreading the disease, medical treatments, and the ill effects that incentivize avoiding contagion. Of course, there are no precautionary measures against catching the autism virus, and no method for the equally absurd notion of a cure. Perhaps most obviously, autistic people do not suffer from autism.

So what is left to be made aware of? A comprehensive map of autistic behavior and experience? In practice, we've been far from successful at that. I was once told in a report from a certified psychologist that “no repetitive movements were observed” after watching me one-on-one for an hour, stimming continuously. I have been told that I “don't look autistic” or that you'd “never suspect” I was autistic while wearing a battery communication necklace, spinner ring, a chew toy, a noise-reducing hat, sunglasses, and flapping. Reassuring me that I'm not fully autistic is not an act of acceptance.

I contend that autism awareness accomplishes nothing more than repetition of the word autism. With that in mind, I must ask who has not already heard the word autism. Is there some Amish family in the mountains, living off of a tofu farm? Is that who we're raising awareness for? I jest. I know that the real beneficiaries of autism awareness are the various corporations with “autism” in their names.

When awareness continues to be promoted after we've already learned the word, the nature of the message usually transforms into one of burden and tragedy. We need to keep bombarding you with these messages until you're adequately scared of this horrible affliction! Even my friends and family can think of me as less of a person because of an identity that constitutes the entirety of my being. It is not difficult to imagine how that would be harmful to someone's relationships, opportunities, and self-esteem. Awareness is the cause of this harm, not the antidote.

When Daniel Leubner's mother burned him alive, she was aware that Daniel was autistic. When Kyle Dutter's father shot him, he was aware that Kyle was autistic. When Scarlett Chen's mother drowned her, she was aware that Scarlett was autistic. When Katie McCarron's mother suffocated her, she was aware that Katie was autistic. When Marcus Fiesel's parents suffocated him, they were aware that Marcus was autistic. When Glen Freaney's mother strangled him, she was aware that Glen was autistic. When Daniel Corby's mother drowned him, she was aware that Daniel was autistic. When Melissa Stoddard's parents suffocated her, they were aware that Melissa was autistic. When Randle Barrow's mother drowned him, she was aware that Randle was autistic. When London McCabe's mother threw him off a bridge, she was aware that London was autistic. If the length of this list bores you, let me remind you that those people no longer have the luxury of being bored. Their lives were lost because the people who were supposed to ensure their safety were instead afraid. How many times does a parent have to murder their child before we realize that the problem isn't that we just haven't raised awareness enough?

Acceptance is not just a positive attitude. It is a necessity. It is a matter of urgency. We the Autistic understand this, and we will not be safe until you understand as well.

Disabled lives (some autistic) lost to awareness