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 barely-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 cult of anti-vaccination 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

Sunday, April 19, 2015

Points In Space

This is my first time writing a poem (unless you count haiku), and it has a bit of an odd history: In my college choreography class, one of our individual assignments was to select a title from a list, then create movement based on the title. I overheard another student asking if we were allowed to use music for this assignment, and the teacher responded "no, but you can do spoken word" which inspired me to create a poem to accompany my dance. The titles provided in class were all from famous dances, so Points In Space shares its name with a dance by Merce Cunningham. I may post videos in the future, as Points In Space was always intended to be performed, not just read as text.

I was born into a culture that was not my own
  the rituals make no sense to me
  my brother hates that I am different
  and even my parents are not really my kin
I am a single point in space

For fifteen years I wondered who I was
  I tried to ask but my voice could not carry
  a silence for which no alternative was offered
In this way they told me my culture was empty
  I tried to read but the sensation of a story in my own tongue was always out of reach
  I might as well try to feel the sky as if it were braille
In this way they told me I am a sad little star
  shining alone in ultraviolet so no one can see me

I refused to believe this, and indeed I discovered the telescope
  but upon seeing the galaxy no later did I learn
  that the other stars are quadrillions of miles away
I shine with stubborn hope that my light will reach the others
  but how do I know they are even watching?
They are just points in space to me
  I know nothing more

I have grown to despise the space
  emptiness is my jail cell
  the other stars in other cells
  and the distance between us the bars
In truth I am no star
  I am a human being on a rock
  but just as the distance shrinks so does my jail cell
I curse the rock beneath me
  for it is the space that divides me from my culture
  from myself

And then, acceptance

This telescope that showed me the galaxy
  this screen that told me about myself
  it is not a jail bar
  it is the key to the cell
The stars and I may be at different points in space
  but we are already one because I am seeing their light
  that IS my culture

I do not ring the door bell when I come home
I press the power button.

Reading the poem at Autism HWY annual chalk festival, April 18, 2015.