14 November 2012

Suffocation


Trigger Warning: Murder, abuse, torture, and descriptions of specific crimes against disabled people. Also ableism in general.
--

This is a poem that I wrote and performed for the Education Week open slam. 


Suffocation


I cannot feel
But it is not because I am not able
Not because I am not capable

They hold me down
They sit on me
They pin my arms behind my back
And wrench my wrists til I go slack
They push my face into the floor
They hold my legs while I beg “no more”
They lock me in an empty room
They watch me though I can’t see them
They won’t let me be with the other kids
Won’t let me learn and play like the rest of them

I cry
I rock
I flap
I spin
I scream
I bang
I pick my skin

I want to talk but they won’t listen
They talk about me like I’m not there
I’m diseased, they say, defective, deficient
My mind is broken
There’s something wrong and they need to fix it
They pathologize every bit of me
If I laugh
If I smile
If I cry
If I’m happy or sad
If I want to eat or sleep at unusual times

They strap me down and leave me for hours
They attach wires to my arms and legs
And shock me for being me
Once
Twice
Thirty times in a day

I can’t suffer this longer
They’re suffocating me
And if they kill me
I know they’ll go free
They did it to Katie and George and Daniel
To Tracy and Laura and Calista

In their eyes, I am not human
Subhuman
Less than human
Defective neural matter hidden behind a human face

They are the ones putting up with me
They’re the “heroes” for abusing me

It’s not that I won’t resist
I can’t
Not while they can do it again
Not while the law can let them
Not while they’re crushing me
Pinning me to the floor
Locking me alone for the crime of existing
Incarcerating me in some “group home”

They won’t let me try
Won’t give me the tools I need to succeed
Won’t let me communicate
Won’t listen when I do
Won’t turn off the lights and sound and smells
Won’t let me learn the way I can
Won’t tell me I can do whatever I dream
Won’t tell me I’m okay the way I am

They tell me I’m not capable of dreaming
They tell me I’m not capable of feeling
They tell me I’m not capable of being human

So they try to beat me out of me
Try to stamp my soul from my body
Try to sever nature from behavior
Try to pound me into a mold of their making not meant for me

If they have their way, I’ll never know community
I’ll never know my own history, the history of my people

But I know
Because I learned by nightfall from dark corners of safe spaces on crip space webpages
I know now who I am

And do you know who I am?

I am Carrie Buck
Sterilized without consent because my mother and daughter and I were disabled

I died in the Holocaust
I was the first among them, the first among the Untermenschen

I was in Willowbrook
Chained to walls and beds

I am the Blind laboring for twenty-two cents an hour
In the name of charity

I am the “idiot” and “insane person”
Disenfranchised, unable to vote in my own hometown

I am Hope Block
Unable to marry my love because we are disabled

I am Kalanit Levy
Wrongfully born
Should have been aborted had the doctor done the right thing

I am Katie McCarron
Suffocated by my mother for being Autistic

I am George Hodgins
Shot by my mother for being Autistic

I am Daniel Corby
Drowned by my mother for being Autistic

I am Tracy Latimer
Gassed by my father for having cerebral palsy

I am Laura Cummings
Tortured, raped, and murdered by my mother and uncle
For being disabled

I am Calista Springer
Chained to a bed and killed by my father and stepmother
For being Autistic

I am Andre McCollins
Tied down for seven hours
Shocked thirty-one times
Because they could, would, and did

I am the target of your pity and fear and scorn
I am your problem, society’s problem, your burden, society’s burden

You erase me
You silence me

I rage
Unheard
Unseen
Unknown

I despair in your prisons
your schools
your cesspools of forced labor and segregation

For me there are no rights
No protections
No humanity
No decency

And I tremble, by God, I tremble
Because I know you’ll come for me next
You’ll come for me in the guise of treatment and protection
And when you murder me, when you slaughter my soul and crush my spirit
You’ll earn the accolades, the sympathy, the empathy

As you take your knives and guns and straps and wires and chains and pills
As you hammer me and batter me and choke me and beat me
As you win
As you erase me
As you kill me

What will become of me then?

05 November 2012

Protesting Autism Speaks

Trigger Warning:
Good amount of profanity, ableism, lots of ableist quotes, and extensive discussion of ableism. 
Summary of 95%* of the People from the Protest of Autism $peaks
*number metaphorical, not scientific
Lydia Brown, Autistic Hoya
Monday, 5 November 2012

IMAGE DESCRIPTION
(you can also click for larger image)

From left to right: Arrow pointing off-page that says "other protester petting dog;" back of man's head, man saying, "Don't you fucking touch my dog! Don't even look at my dog!" with arrow labeling him as "mean asshole from previous protests who likes yelling at Autistics;" woman with short hair and glasses holding pile of flyers in left hand and offering a flyer in right hand, with arrow labeling her as "me" as she says "Hi, do you want to hear from Autistic people?"; man wearing scarf, coat, and pants, holding and reading flyer, labeled as "guy who takes flyer;" person of unidentifiable gender beside him without labels or speech bubble; woman with shoulder-length hair and bangs wearing winter coat, gloves, and pants, who is labeled as "typical response" as she raises one hand and scoffs, "No, thank you" with another label saying "yes you read that right;" two young blond females, one in a hoodie and the other in a stylish coat with buttons, labeled "college kids" as one glares and says "That is fucked up;" young male with short dark hair and a t-shirt that says Team David with the A$ puzzle piece below the words, labeled "Autistic kid dragged with family;"  man with short gray or blond hair turned toward the right and labeled as "guy who stares curiously;" and woman with short, curly dark hair, wearing a matching Team David t-shirt over a long-sleeved shirt and pants, saying, "Those are the people protesting the Walk. We don't need to take their paper; we have David."


Protesting Autism Speaks

Saturday morning, I spent about three and a half hours in the forty degree (that's about 5 degrees Celsius) weather on the National Mall with several other Autistics in a protest of the Autism Speaks National Walk Now for Autism sponsored by the Autistic Self Advocacy Network. We held beautiful, hand-painted signs and staked others in the ground, informing passerby of the financial irresponsibility and ineffectiveness of Autism Speaks while asserting our right to be heard and respected for who we are, as we offered copies of the ASAN "Before you donate to Autism Speaks, consider the facts" flyer to anyone who would take them. My hands and legs went numb within the first half hour (inadvertently leading to my phone irreparable breaking because I couldn't tell what I was doing with it, and it went flying over the sidewalk), but a considerable number of people did take our flyers.

Before the walk began, a pair of fellow Georgetown students passed by on their way to the beginning of the walk. (I hope they didn't recognize me or know who I am.) I felt literally ill upon seeing people from my school, a school that I'm proud to attend, supporting an organization that would love to see a future in which I and people like me no longer exist. (It's a great way to be accepting and inclusive, fellow Hoyas.)

Later, after the walk had begun, I saw a man with an adorable dachshund and stooped to pet the visibly happy puppy. Immediately he noticed I was with the protest and shouted tersely "Don't you touch my dog!" Katie Miller, one of ASAN's Board members who was also there (and who had directed our sign-making on Friday), did the same, and he yelled at her, "Don't you fucking touch my dog! Don't even look at my dog!" She said that she recognized his voice from previous protests as someone who apparently enjoys screaming profane, hurtful, insulting things at Autistics who dare to voice opinions against Autism Speaks.

At one point, I saw a man I know and with whom I've conversed in the past as an ally. I thought I could trust him, because he seemed in the past to understand that the role of an ally is to do everything you can to amplify the voices and presence of Autistics and to support Autistics in letting us lead our own movement. And yet there he was at the walk, and he had the gall to tell me that while he knows I and others have serious problems and misgivings with Autism Speaks, he was there anyway. I had no words to say to that.


The worst were the people who didn't take them.



In the beginning of the protest and walk, a pair of young women, likely high school or college students, passed us, glancing at our signs, and one of them declared vehemently, "That is fucked up." What's "fucked up" is the deliberate erasure of Autistics from conversations about us, but I guess "well-meaning" non-Autistics have the luxury of picking and choosing whom they'd like to hear from and whom they'd just like to go away.


Then there was a man with autism (that's how he identified himself) wearing a baseball cap with the Autism Speaks name and puzzle piece, who got into my face and told me, "I have autism and I support Autism Speaks." When I tried twice to politely offer him our flyers, he proceeded not only to accuse me of "furthering the anti-abortion Republican agenda" and propagating "big lies" about Autism Speaks, but to repeatedly emphasize his own wish to be "cured of this disease" and to make sure no one else "has to have it ever."

Internalized ableism has tragic consequences.

But the worst, the absolute worst, was the most common response. We asked dozens and dozens of people "Would you like to hear from Autistic people?"

And dozens and dozens of people either gave polite smiles or frowns and said "No" or "No thank you" and kept walking.

Think about that.

"Would you like to hear from Autistic people?"

"No."

I don't think anything I can write can underscore the dehumanizing, erasing tactics that Autism Speaks uses more than that. To be at a walk ostensibly in support of Autistic people -- loved ones or strangers -- and then to say, explicitly, to Autistic people's faces, that no, you don't want to hear from us, thank you, and walk away without so much as looking at us reeks of ableism and silencing.

And it hurts.

"Would you like to hear from Autistic people?"

"No."


For people who often talk about how they wish non-speaking children would learn to use speech to express themselves, this is pretty damn appalling and egregiously hypocritical.


"Would you like to hear from Autistic people?"

"No."

For people who claim that one of the "core deficits" of autism is in social and communicative skills, this is pretty damn rude and unapologetically so.

"Would you like to hear from Autistic people?"

"No."

For people who claim to love us, accept us, and support us, this is about as unaccepting as you can get.

"Would you like to hear from Autistic people?"

"No."


01 November 2012

A Troubling Trend at Sci-Fi Cons (or why we need more Autistics speaking)

Trigger Warning: Ableism, brief cissexist and binarist quote, and descriptions of ableist encounters. 




A Troubling Trend at Sci-Fi Cons
(or why we need more Autistics speaking)

Like many geeks around the world, two Autistic friends of mine, Kassiane Sibley (Radical Neurodivergence Speaking) and Terry Falk*, wanted to attend sci-fi conventions near where they live this year. Terry attended Arisia 2012 in Boston back at the beginning of the year. Kassiane has been planning to attend Orycon in Portland this weekend.

Several months ago, Terry sent this email to a private list-serv (posted with permission) about their experience at Arisia.
I was recently at a panel about autism with no one on the panel who was actually diagnosed or self-identified as autistic, and when I asked about it, the moderator (who was completely ableist even aside from this) said that the people who put together the panel had specifically selected against autistic people because "we would dominate the discussion with our own experiences."  Like that was a bad thing.  And like parents of and professionals who worked with autistic people who were on the panel were not "dominating" it by discussing their experiences. 
Asked for further explanation, Terry shared this formal complaint that they had sent to Arisia's organizers.
I am an Autistic person.  I attended the autism panel at Arisia this year expecting it to be largely a "101" panel, so to speak, about the autism spectrum and issues currently facing Autistic people, with unintentional ignorance that the members of the (hopefully representative) panel would correct and discuss.  Instead, there were no self-identified Autistic people on the panel - it was composed of one researcher, two educational/treatment providers, and two parents of Autistic people.  When I asked after introductions why there were no Autistic panelists, the moderator, Justine Graykin, responded that whoever had put the panel together had specifically opted not to include Autistic people, as it was thought that including us last year had resulted in us dominating the discussion by talking about our own personal experiences.  This was in spite of the fact that both parents of Autistic people were asked about their own personal experiences in that capacity.  When asked about this, two of the panelists - one of the parents and one of the providers - said that they could be Autistic (one was diagnosed as such earlier on in life and was unsure as to whether he believed that diagnosis, while the other was an undiagnosed mother of an Autistic person who suspected that she might be Autistic as well) - but neither of them were there in the capacity of representing the Autistic community as Autistic people.  This lack of representation goes against a key principle of the disability rights movement, that there be "Nothing About Us Without Us," and the fact that this was intentional is incredibly shocking and disappointing. 
In addition, Ms. Graykin did and said a number of ableist and otherwise disrespectful things.  Most notably, in discussing the children she works with in providing educational services, she - a(n at least seemingly) neurotypical and able-bodied individual - got up to do an imitation of the posture and movements of a person with a developmental disability to demonstrate what was "wrong" with it.  She went on to say that Autistic parents of Autistic children should possibly be sidelined or outright excluded from the process of developing their children's educational plan in favor of leaving it to neurotypical parents to make these decisions.  Additionally, she relied on categorizations of Autistic people as "low-functioning" and "high-functioning," which are considered inaccurate and offensive within the Autistic community, and refused to back down from using this terminology when the problems with it were pointed out to her.  Nobody on the panel questioned these statements or actions, though one of the parents, Aimee Yermish, did a nice job of explaining how the educational system and the people working in it could be the problem in a situation just as easily as the Autistic person having to navigate it and how trying to force an Autistic person to act in a neurotypical manner could be very traumatic and counterproductive.  The best thing I can say about Ms. Graykin's contribution to the discussion is that she stated that vaccines do not cause autism, but that should be a starting point, a bare minimum, not the standard to be met. 
I also felt that Ms. Graykin was incredibly disrespectful to me, both in her capacity as a moderator and otherwise.  At the beginning of the panel, I specifically asked (as this had been a problem in other panels and I wanted to be able to participate in the discussion) whether the discussion would be conducted by audience members raising their hands or calling out, and was told that it would involve hand raising only.  I followed this rule in attempting to participate in the discussion, but was repeatedly ignored, while she recognized members of the audience who did not raise their hands and instead called out.  When finally recognized, I re-asked about the rules of the discussion for clarification purposes and as a subtle way of calling this out before making my original point.  After the discussion finished, I went to ask Ms. Graykin about who had made the decision to exclude Autistic people so I could file a complaint with all the necessary information.  Instead, she told me that I was "out of line" for having asked for clarification of the rule, and said that she was "explaining how things worked" to me since apparently admitting that I was Autistic meant that I needed to be treated like a misbehaving child.  She insisted, in spite of my and two other audience members' observations, that she had been observing the rules, and that I was simply being disrespectful in questioning the moderation of the panel.  Thankfully, after the panel, the researcher, Stuart Ferguson, who seemed genuinely interested and receptive to the disability rights angle of this discussion, confronted Ms. Graykin about her excluding me from the conversation, and seemed interested in having an Autistic presence on the panel in future years.  Nonetheless, I was incredibly upset at having spent an hour being discussed in an exclusionary and ableist way in a space I expected to be at least somewhat safe and then being talked down to, arguably on the basis of my disability, for trying to bring attention to the ways in which this was problematic or even trying to be involved at all. 
While I do not object to having parents and professionals take part in a panel discussion about autism issues, I think that it is absolutely essential to have an (openly) Autistic presence on such a panel, representing Autistic people as equal voices in the discussion.  I also think that it's inexcusable to have someone - the moderator, no less - on the panel who can't be aware of their position as an outsider of sorts in this nor be respectful of the people that they are talking about.  I am convinced that many if not most Autistic people, if told what the focus of the panel is, can manage to stay on subject as easily as neurotypicals.  I also can't imagine that at a science fiction and fantasy convention it would be that difficult to find a qualified Autistic person to serve on the panel.  I hope in future years, Arisia will reconsider its position on allowing Autistic people to talk about their own lived experiences and general understanding of the issues involved with being on the spectrum.
Terry described Arisia as a sci-fi con with a social justice bent and mentioned that the convention had been both queer and kink friendly. This is a common problem in so-called "social justice" communities--when people who are good on one set of issues and inclusive of one marginalized community turn around and display staggering bigotry and privilege on another set of issues and toward another marginalized community. I know of a disabled person excellent on disability issues who referred to a non-binary person as "he-she." I know of a person of color very active on issues affecting people of color who confronted me to my face with the suggestion that I'm "too high-functioning" to understand what I'm talking about when I discuss neurodiversity and Autistic rights. 

But evidently, Arisia isn't the only sci-fi con that has this problem of discussing autism without Autistics. 

Kassiane published a post earlier this week describing her experiences with Orycon after learning from a friend that the con "is having a panel about autism & whether there's an increase or not." Kassiane didn't recognize the names of any of the panelists. That was the first warning sign. After emailing the conference organizers, they sent several email replies, some of which included the panelists, essentially explaining away the exclusion of actual Autistic people as convenient and not-that-bad. Each of the panelists are non-Autistic parents of Autistic children. Kassiane received perfunctory responses from each of the panelists confirming their expertise and "sophistication" on the subject matter based on their having Autistic offspring. 

Among the more insulting of the emails that Kassiane received was one from Orycon's chair, self-identified as having Asperger Disorder, who defended the decision because it wouldn't "make the panel more valid" if he were to sit there uncomfortably in front of the attendees (given that he evidently dislikes public speaking). The conference's programming coordinators also called Kassiane's inquiry unnecessarily hostile and judgmental. This is the text of Kassiane's original email. 
Good morning, I hear with trepedation that y'all have a panel on autism. I hear with more trepedation that I do not know a single one of these people (I know a lot of Autistic people). Are any of the panelists Autistic? If not, why?
I may not have a doctorate in English or writing, but I can speak to my own experiences as a paid freelance editor and writer when I say that I'm fairly certain that the tone of that paragraph isn't unnecessarily hostile or judgmental. The only hostility I could detect in the entire set of exchanges came from Orycon's staff, the panelists, and the convention chair. (You can read all of the emails through links on Kassiane's blog.) Yet even were Kassiane's perceived tone unnecessarily hostile and judgmental, the frequency with which argument from tone is used to de-legitimize Autistics who dare to question systems designed to work against us is astounding. The condescension and derailing from the conference chair with Asperger's is not merely egregious in its paternalism and de-legitimization, but profoundly disappointing in its unveiling of the ableist and dismissive attitudes that even fellow Autistics can take toward their own. 

The idea that it is perfectly legitimate to allow panels consisting entirely of Autistics to speak about issues affecting Autistics is an infantilizing and erasing affront to our dignity. It happened at Georgetown around the same time as the Arisia incident, when the Psi Chi Psychology Honors Society was hosting a panel on "multiple perspectives" on autism with no Autistic speakers. It occurs with depressing frequency around the world in political, scholarly, and social settings. Yet it would never be considered appropriate within the Black community to host a panel consisting entire of white people to discuss any issues affecting the Black community, nor would it ever be considered appropriate within the Queer community to host a panel consisting entirely of cis straight people to discuss any issues affecting the Queer community. 

The common excuse that the organizers can't find Autistics qualified to discuss the specific topic at hand (whether therapies, parenting, education, public policy, research, etc.) is and always will be invalid. If Autistics represent slightly more than one percent of the general population, that means there are over three million Autistics in the United States alone and over seventy million among the global population. Among those millions of Autistics in the United States and in the world, there are researchers (including autism researchers!), educators (including special education teachers!), public policy advocates (including disability policy advocates!), parents (including of Autistic children!), therapists and service providers (including those who serve other Autistics!), and any other group of subject matter experts or professionals imaginable related to autism and developmental disabilities. Certainly, not every Autistic also falls into one of the myriad categories of ambiguously professional experts regularly called to speak on autism, but of the millions of us in the world, there are plenty who do. Your argument is invalid. 

(The same goes for Autistics uncomfortable speaking in public. For as many Autistics who cannot or will not speak in public, there are many others who can and do.)

In almost every venue where autism is a topic of discussion, including on almost every panel discussion about some topic related to autism, there are few if any Autistics involved with the organizing and planning behind the event, and rarely, if ever, any Autistics invited to speak alongside their non-Autistic peers. The absence of Autistic voices in political, scholarly, and social settings when autism is a topic of discussion only further perpetuates the myth that Autistics either cannot communicate at all or else have nothing worthwhile to say or to be heard. This erasure serves primarily to contribute to the overarching perception of Autistics as either unable to understand (because we are Autistic and therefore incapable of grasping complex topics like other people's perspectives--sarcasm) or unqualified to contribute (because we are only capable of understanding and communicating our own personal experiences and lives and never capable of discussing broader, macro topics). Both forms of de-legitimization result in the near complete silencing of Autistic people from every mainstream forum of public discourse. 

I've asked people if they know of any famous Autistics. The only name I hear consistently is Temple Grandin. (Fictional characters and dead people who may or may not have been Autistic don't count.) If I ask people if they know of any famous women or Asians or Muslims or queers, I'll get several names. If I ask if they know of any famous Autistics, I get one. Sometimes none. The absence of our voices is striking.

I need not spend much time explaining that the geek, gamer, and fan communities frequently overlap with the Autistic community. Many neurominorities are disproportionately represented in the very neurodiverse geek, gamer, and fan communities. A huge number of my Autistic friends and acquaintances fall into these categories and frequently attend sci-fi/fantasy/gaming cons. This reality gives these encounters a particularly painful sting that would not have occurred in a context with much fewer Autistics from the beginning. It flavors them with bitter disappointment. You would have expected better from a community already full of Autistics. This would have been expected from parents-only communities, from any community with few to no out Autistics. But not from places that Autistics call home.

We need more Autistics speaking because if this can happen where it hurts, it can happen anywhere, not merely in spaces already hostile to us. Evidently, the standard that anything can happen without us exists even in spaces thought to be safe and welcoming. We need more Autistics speaking because if strangers can name more than one famous Autistic and someone other than or in addition to Temple Grandin, then we've made some bit of progress. Ending the status quo that leaves us very much invisible because of silencing and erasure begins with amplifying the voices and presences of the many diverse Autistics who comprise our communities. We cannot allow those who would erase our presence and chip away at our existence any excuses with which to do so.

We need more Autistics speaking.




__________
For additional writings on Autistic culture, see the Loud Hands Project and Autistics Speaking Day. That's today, November 1.

* Not real name.